Dementia Grief Therapy: A Guide for Health Professionals 9783031554391, 9783031554407

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Adrienne Ione

Dementia Grief Therapy A Guide for Health Professionals

Dementia Grief Therapy

Adrienne Ione

Dementia Grief Therapy A Guide for Health Professionals

Adrienne Ione Silver Linings Integrative Health, LLC Tacoma, WA, USA

ISBN 978-3-031-55439-1    ISBN 978-3-031-55440-7 (eBook) https://doi.org/10.1007/978-3-031-55440-7 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Paper in this product is recyclable.

“Paradigm shifting framework for healing perceived loss related to dementia health. The Dementia Grief Therapy was designed with compassion and has the potential to be applied cross-culturally.” – Dr. Kexin Yu, Layton Aging and Alzheimer’s Disease Research Center at Oregon Health & Science University in Portland, Oregon, United States “Effective combination of data-driven analysis with real-world examples provides a comprehensive overview of the challenges and opportunities in addressing dementia health globally. The focus on community involvement and changing societal perspectives towards individuals living with dementia adds a human touch to the narrative, emphasizing the importance of empathy and understanding in creating an inclusive society.” – Dr. Vivek B. Singh, TerraMD Integrative Medicine in Rishikesh, Uttarakhand, India

This book provides a critical synthesis of neuropsychological, therapeutic, exercise and mindfulness research explaining what is likely fueling the often disruptive emotions and behaviors associated with dementia. It then takes the vital next step in outlining a therapeutic intervention focused on dementia health, as opposed to dementia deficits, with innovative strategies to open possibilities for symptomatic people to create meaning in their daily living. The final step is providing therapists research strategies with data points to ensure their work is providing benefits to the client. – Dr. Connie J. Beck, Retired Professor of Psychology, University of Washington, Tacoma This book is amazing. It deepened my thoughts on the impact of culture and race on dementia. It’s an excellent and much needed addition. – Dr. Fariha Khalid, University of Lahore, Pakistan & Social Security Hospital of Lahore DEDICATION To everyone who lives with dementia symptoms in a world that doesn’t understand. We have much to learn. Thank you for modeling love, beauty, and awe and teaching us how we can live in harmony. May we all continue listening.

Preface

This book grew out of a recognition for the growing necessity for acknowledging, validating, celebrating, and honoring the experiences of people living with dementia grief symptoms. While person-centered practices prevail in dementia care, much of the literature at the intersection of grief and dementia focuses on caretakers and omits the grief experiences of people living with dementia symptoms. In 2012, I started a local small business in response to learning of an unmet need in the community. Some people aged 65 and greater felt unsupported and unseen in their desires to feel physically and emotionally stronger. Silver Linings Integrative Health aims to motivate people to be actively engaged in the aging process by strengthening, establishing, or re-establishing mind-body coherence. While joining people on their journey of self-discovery, I learned of a second unmet need in the community. Some people living with dementia symptoms feel unheard, unrecognized as valuable people and unappreciated for their potential contributions. With five years of experience crossing paths with people living with dementia symptoms, I heard a recurring theme: long ago loss appearing in the body and disguised as physical pain or disease. Is this grief, I wondered? I continued to listen and be a fellow traveler with people on their journey. In 2019, I started a search of the body of dementia literature focusing on grief counseling theory and practice, human flourishing, and interventions focused on using the body to heal. Studies focused on grief experiences of people living with dementia symptoms were scant. I learned of five dementia grief models and all of them focused on the grief of people adjacent to the person living with dementia symptoms. This is a grave injustice. I started listening to a conversation more than 20 years ago. At the time, I was employed as an exercise specialist with the Marine Corp. and a counselor in a group home. People in both settings had strengths, and if only there was an opportunity for people focused on physical health to learn from people focused on mental health, then more people could inhabit a state of thriving. I saw this much needed and vital interaction to also be occurring within the body of each of us. For some, the mind and the body seemed to divorce long ago. Both felt abandoned. The possibility of reconciliation is very real. Starting the process of reconciliation and unification is one step toward creating a flourishing world. Perhaps the conditions in this world vii

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Preface

are just right for more people to see the beautiful abundance and ubiquity of human dignity. People living with dementia symptoms are one of our world’s greatest untapped natural resources. Dementia Grief Therapy (DGT) is an innovative and novel therapeutic approach that seeks to collaborate with a person – who is living with dementia symptoms and is also grieving  – on their journey of acknowledging, validating, and integrating their losses into a coherent present self-narrative. Our emotions hold the potential to unite us. Acknowledging the variations among us allows the process of developing culturally relevant, community situated, and individually specific policies, programs, and therapies to proceed in a dynamic and impactful way. May we continue to meet our losses with curiosity and bravery. Allow the adventures to begin. Tacoma, WA, USA

Adrienne Ione

Contributors to the Book

Feedback received from research presented at national and international conferences helped shape this book. In particular, the Gerontological Society of America (GSA), Alzheimer’s Association, and the International Society to Advance Alzheimer’s Research and Treatment (ISTAART). Dynamic conversations in the GSA dissertation writing group in Fall 2021 helped plant some important seeds that germinated and grew into parts of this book. Thank you. The students in a class I taught at Smith College, in Fall 2023, asked insightful questions. I appreciate your curiosity and dedication to learning.

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Acknowledgments

Throughout the journey of this book development, I have delightfully crossed paths with many people. The intersecting of our paths, however brief or long, has shaped me and my thoughts and is reflected in this work. For all of these wondrous moments and your contributions, I am thoroughly gracious and appreciative. You know who you are. Khristine and Susan Wolfe, your generosity of space on the Hood Canal coupled with your solid friendship are treasures. Colleen Carmean and Holly Welty, thank you for enriching my life with your friendship. Deborah Jordan, thank you for offering critical feedback and enlightening conversations that have helped shape DGT. People can breathe easier because of you. Community members at Franke Tobey Jones have been welcoming, receptive to radical ideas and encouraging in thoughtful dialogue. Thank you for adding another dimension to my perspectives on the world. Jay and May Halim who own a UPS print shop, in Tacoma, Washington. If you are looking for exceptional, efficient, and professional service, this is the place. Even if you live outside of Tacoma, they can meet your printing and shipping needs. May and Jay, terima kasih banyak. The Helen Riaboff Whiteley Center at Friday Harbor provided a peaceful, quiet, and serene environment to produce some of the work reflected herein. Thank you for your generosity. Metro Parks’ employees hold an unwavering dedication and commitment to creating model parks and exceptional service. You make our community’s parks the magical and harmonizing spaces they are. In particular, the wonderful community of people and plants at W.W. Seymour Conservatory who make my work possible. You each add a ray of sunshine to my world. Thank you. Members of the Yogamu community, the softness and gentleness you add to a world that can sometimes feel jagged is beautiful, consistent, and much needed. I appreciate each of you who encourage me to expand the edges of my practice. Shanti. My brother and sisters – Jerry, Jenn, McKenzie, and Melissa – thank you for adding music, laughter and lightness to my life. xi

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Acknowledgments

Chris Demaske, my favorite olive. Thank you for the ongoing conversation about life, social justice, and inequality that started on those concrete stairs, on a lovely sunny day in May nearly 20 years ago and continues to this day. I appreciate your consistently asking the most important question: Why? Last, I extend immense gratitude to several people at Springer Nature Publishers who, from the beginning and continue today, wholeheartedly believe in this project: Sharon Panulla, Olivia Ramya Chitranjan, Amelia von Zumbusch, Lavanya Devgun, and Paige Ripperger. Additionally, production editor M. Gomathi at Straive has a keen eye, attention to fine detail and is simply superb to work with. 1,001 thank yous to each of you.

Disclaimer

This book is not intended as a substitute for the medical advice of a trusted medical professional, geriatric psychiatrist, psychologist, or any other healthcare professional. The information in this book is meant to supplement, not replace, proper dementia health training. Throughout this book, composite vignettes are used to make salient treatments and concepts. Some parts of these vignettes have been fictionalized to protect the confidentiality of actual participants with whom I have worked. Any similarities a reader recognizes are simply this  – similarities in the lived human experience. Similarities should not be mistaken as a representation of any person, alive or dead.

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Contents

Part I Foundations for Developing Dementia Health 1

Introduction����������������������������������������������������������������������������������������������    3

2

Social Justice��������������������������������������������������������������������������������������������   35

3

Grief Recognition Within Dementia Health: A Global Perspective������������������������������������������������������������������������������������������������   67

4

Demystifying the Dementia Divide ��������������������������������������������������������  113

Part II Proposed Model of Therapy: Global Ethics, Therapeutic Particulars, and Case Composites 5

Guiding Ethical Considerations�������������������������������������������������������������  191

6

A Proposed Model of Therapy: Dementia Grief Therapy�������������������  209

7

Case Composite: Masahiro ��������������������������������������������������������������������  273

8

Case Composite: Vikash��������������������������������������������������������������������������  285

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Case Composite: Grace ��������������������������������������������������������������������������  305

Part III Importance of Considering a History of Trauma in Dementia Health: Evidence, Limitations and Conclusions 10 Evidence  for Including a History of Trauma as a Risk Factor for Dementia Development����������������������������������������������������������������������  325 11 Limitations,  Shortfalls, and Future Recommendations: On Therapies, Policies, and Programs ��������������������������������������������������  351 12 Conclusion������������������������������������������������������������������������������������������������  359 Index������������������������������������������������������������������������������������������������������������������  365 xv

Abbreviations

Aβ Beta-amyloid ACE Adverse Childhood Experiences AD Alzheimer's Disease ADL Activities of Daily Living ADORE Alzheimer’s and Dementia Outreach, Recruitment, and Engagement ADRD Alzheimer’s Disease and Related Dementias APA American Psychological Association APA American Psychiatric Association ARDSI Alzheimer's and Related Disorders Society of India AWV Annual Wellness Visit BPSD Behavioral and Psychological Symptoms of Dementia bvFTD Behavioral variant CBT Cognitive behavioral therapy CDC Centers for Disease Control and Prevention CDMRP Congressionally Directed Medical Research Program CDR Clinical Dementia Rating CG Complicated grief CMA Centers for Medicare and Medicaid Services CNS Central nervous system COVID-19 Corona virus disease CSF Cerebrospinal fluid dACC Dorsal anterior cingulate cortex DFC Dementia-friendly communities DGT Dementia Grief Therapy DIA Dementia India Alliance dlPFC Dorsolateral prefrontal cortex DMHP District Mental Health Programme FINGER Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability GAP Global Action Plan xvii

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Abbreviations

GUIDE Guiding an Improved Dementia Experience HPA axis Hypothalamus-pituitary-adrenal axis ICD International Classification of Diseases LAS Longitudinal Aging Study LFR low-frequency right-sided LTCC Long-Term Care Community METI Ministry of Economy, Trade and Industry MHLW Ministry of Health, Labour and Welfare MMSE Mini-Mental State Examination MoCA Montreal Cognitive Assessment MOOCs Massive open online courses MRI Magnetic resonance imaging NCD Neurocognitive disorder NGO Non-governmental organization NIA National Institutes for Health on Aging NIH National Institutes of Health NIMHANS National Institute of Mental Health and Neurosciences NPI Neuropsychiatric Inventory NPS Neuropsychiatric symptoms PGD Prolonged grief disorder PM Performance Mastery pnfaFTD Progressive non-fluent aphasia PTSD Post-traumatic stress disorder QUALID Quality of Life in Late-Stage Dementia RAISE Recognize, Assist, Include, Support, and Engage SAMHSA Substance Abuse and Mental Health Services Administration SE Self-efficacy SOC Sense of coherence SSRI Selective serotonin reuptake inhibitors svFTD Semantic variant TBI Traumatic brain injury TEI Traumatic emotional injury TH Tyrosine hydroxylase the Plan WHOs Global Action Plan on Dementia TMS Transcranial magnetic stimulation VHA Veteran Health Affairs WHO World Health Organization WW-FINGER World Wide FINGER

Part I

Foundations for Developing Dementia Health

Chapter 1

Introduction

Key Points • The roles grief may play in understanding dementia health. • Does a focus on dementia health versus dementia symptoms change the lived experience? • Importance of emphasizing grief of a person versus grief for a person.

Lost in a strange place for some time, Alice (in Wonderland) encounters a Cheshire cat. She asks the cat for directions, and it responds, “That depends a good deal on where you want to get to” (Carroll, 1893). The rich adventures that await us in exploring the unknowns of a rabbit hole filled with dementia health, mind-body therapies, and unmetabolized grief can be met with the fascination and curiosity Alice expressed toward the rabbit in a waistcoat. Grab your curiosity, perhaps your favorite pencil or pen, some water to drink and let’s explore the rabbit hole together.

Dementia Health This book is intended to magnify your skills and judgments. You are already doing exceptional work. The therapeutic approach presented in this book coupled with rich data from three case composites and the vignettes sprinkled throughout, are all intended to offer a slightly different lens for the important work you are engaging in. The important work you are doing is maybe you are living with dementia symptoms, know someone who is, or desire to know about your own health and wellbeing. Or, you are a student, practitioner, policy advocate, politician or researcher. In whatever way you are arriving at these pages is perfect. Settle in.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_1

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1 Introduction

My greatest dream is, as a connected and caring global community, we will begin to think in terms of dementia health as opposed to dementia deficits. This book is entering into the conversation on global need for innovative approaches to how we conceptualize a diagnosis of dementia and how this then informs the quality of life while living with dementia symptoms. One idea is to introduce a new field: dementia health. Dementia health is comprised of individualized considerations of whole system (body-mind) wellbeing that are shaped and informed by disease etiology, grief, and trauma. As we navigate this rabbit hole of a book together, let’s ponder: How might the lived experiences of dementia symptoms be different when framed in terms of dementia health? And, to what extent must race and culture be considered in dementia grief experiences? It truly is a delight to meet you here on the pages of this book. With both of us arriving on this same line of this text, it seems we share a passion, interest, and curiosity in grappling with understanding the impacts of unmetabolized grief and trauma on the body, the quality of relationships with various lived experiences and dementia development. For people currently living with dementia symptoms, you hold tremendous expertise on your own grief, as well as your body-mind. The additional knowledge contained in this book, as well as a careful and thorough exploration of the literature, can be combined to significantly enhance therapeutic practices, research, medical practices, academic inquiry, policy and advocacy work or any other journey you are on that has landed you among the soft, stark, and gentle words that make this book uniquely it. It is only when we maintain a commitment to a collective effort to optimizing overall health and wellbeing, working as co-participants or collaborators, that we will begin to see an increase in psychological empowerment, such as sensemaking and consciousness-raising. We have entered an era where we realize the importance in moving past the objective healthcare professional, policy maker and researcher and toward connecting as humans. In so doing, real and lasting change can occur. Now, let’s consider how acknowledging past unintegrated losses might magnify or reduce dementia symptoms. To do this might necessitate dementia practices move therapeutic considerations outside of the mind and into the body. To accomplish this, perhaps we must first understand a bit about grief and then move into a history of dementia, followed by a brief overview of diseases with accompanying dementia symptoms.

Grief The process of grief is everlasting, from episodic onset of a loss event until one’s death – although emotional, physical, and psychological experiences may fluctuate between more and less intense. The intensity of the loss experience can be mediated by an increased and expanding understanding and integration of the loss in relation to the identity of the self as defined by the role of attachments – to the self as well as others (Erikson, 1980, 1982; Dworkin, 1986). Nonetheless, the ongoing, persistent, and evolving nature of grief is that it holds the potential to be reactivated when

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we are confronted with current losses. For example, the experience with the process of being screened for cognitive impairments and receiving a diagnosis of a disease where dementia symptoms are present is not felt by everyone everywhere in the same way. Our bodies can also code this diagnosis as a loss event, then reactivation of past losses are potentially stronger when prior losses have not been fully acknowledged or integrated into the mind-body landscape (van der Kolk, 2014). When we fail to acknowledge losses, systems in the body produce disease (Thimm et  al., 2020; Prigerson et  al., 1997). From a relational perspective, this can manifest as insecure, avoidant, and fearful attachments between systems in the body. At a cellular level, when grief episodes are unintegrated, then the body betrays the mind, and the body grieves louder than the stories we scream to ourselves and persuasively repeat to others. Grief creates many changes in the body from neuroendocrine activation to immune imbalances to inflammatory cellar responses to cardiac functioning (Seiler et al., 2020; Buckley et al., 2012; Institute of Medicine, 1984). Conscious and unconscious aversion to integration is an attempt to absolve us of our own suffering. Grief, from a psychological response perspective, occurs when loss creates an interruption in attachment congruence (Bowlby, 1973; Mancini et  al., 2009; Neimeyer et al., 2002; Shear, 2010; Stroebe et al., 2007). For people diagnosed with dementia, changes in attachments or losses are less often understood as the “receding of the known self” as informed by a person’s own experiences, and more often from observations that are articulated by others (Blandin & Pepin, 2017). Emphasis tends to be on identifying, exploring and therapeutically intervening in the pre-­ death grief symptoms, losses or experiences of spouses, adult children or caregivers (Liew et al., 2019; Meichsner et al., 2019; Hall & Sikes, 2017; Hovland, 2018). For far too long, the treatment focus has grappled with the effects a diagnosis has on others, even when loss of agency, identity, and personhood in the person living with dementia symptoms is only briefly acknowledged. Although loss and grief are fundamental aspects of dementia  – or perhaps in some situations are a byproduct of a dementia diagnosis, and in other cases may even be a symptom of grief – the majority of studies tend to focus on grief for, rather than of the person diagnosed (Cheung et  al., 2018, Moloney et  al., 2017; Doka, 2010). In other words, when grief and dementia intersect, it is the grief of caregivers that takes center stage (Liew et al., 2019). For example, in Liew and colleagues’ model, they claim “the algorithm begins by focusing on the person with dementia” although the focus of the study is actually on determining the appropriate grief services for caregivers (Liew et al., 2019). As will be explored in depth in future chapters, dementia health practices highlight the importance of adopting a person-centered therapeutic orientation to treatment and it is common practice for recognition, validation, and support of people who are experiencing grief and loss to be necessary components of therapeutic practice (Feil, 2017; Frank & Forbes, 2017; Bryden, 2002; Tziraki et al., 2017). Current clinical assessments and therapeutic practices tend to place more emphasis on caregiver grief, while relegating to the background the grief and losses of the person diagnosed.

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Additionally, the exploration of grief as a potential modifiable risk factor in dementia development remains in an embryonic state. The scientific, health and research communities are learning that one significant risk factor in dementia development is neglect and abuse that happens in childhood, commonly referred to as adverse childhood experiences (ACEs; Tani et  al., 2020; Corney et  al., 2022). Trauma and grief, when not fully metabolized in the body (a process of transforming harmful experiences into something useful or nourishing), can lead to physical, psychological, and cognitive repercussions (Deutsch, 1937; Menakem, 2017; Juth et al., 2015; van der Kolk, 2014; Stroebe et al., 2007). Unsupported, unmetabolized, or unacknowledged trauma and grief (losses that remain in a state of reoffending the mind-body) is increasingly becoming a major public health concern (Eisma et al., 2020; Auon et  al., 2012). For example, on March 11, 2020, WHO declared COVID-19, an infectious disease caused by the SARS-CoV-2 virus, a global pandemic. COVID-19 health and safety measures also created a scene where people already facing limited access to much needed grief support experienced even more severely limited access (Harrop et al., 2021; Wallace et al., 2020). This then becomes an even more troubling public health concern when we know about the healing power of a previously unsupported loss (e.g., sudden parental death, abortion, etc.). Grief work on a current loss (e.g., loss from COVID-19) potentially has double bodily systemic integration (where prior and current loss are both metabolized). Although once declared a global pandemic, as of September 2023, the WHO has urged a transition from emergency to management. They published a report offering guiding principles on longer-term disease management of COVID-19. Now more than ever, we need to commit to joining people on their journey of acknowledging their own trauma and grief, validate their losses and integrate these experiences into a current version and coherent narrative of the self. What impact might there be on global dementia case numbers, if we cultivate spaces where people can shift the quality of their relationships with the self from loss to love? It is a very real possibility that in so doing, we will see a global reduction in the number of people diagnosed with diseases and accompanying symptoms of dementia. A small study was conducted on the mourning process experienced by people with dementia when their spouse dies (Watanabe & Suwa, 2017). Despite data on observed behaviors being collected from family members and caregivers, researchers encouraged the further development of a model of grief, one that takes into account specific symptoms, wishes, and desires of someone diagnosed with dementia. In 2013, The Irish Hospice Foundation, created a small project that promulgated grief and loss practice tools specifically with intended implementation for people diagnosed with dementia. Out of this small project grew a three-year program, Changing Minds: Promoting Excellence in End-of-Life Care for People with Dementia, with multiple aims, one of which was to train caregivers in understanding the grief process, recognize grief behaviors in people diagnosed with dementia and provide support for these losses (TIHF, 2016). Personal communication was attempted with the Foundation, with a goal of following-up on the continuance of grief-informed dementia practices and I received no response. To my knowledge, no

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specific grief work practices with people diagnosed with dementia symptoms have been formalized. Now, it’s important to note – grief aversion is not universal, rather it is a culturally specific phenomenon (Masquita, 2022). Further, the processes of grief and mourning occur in community. Although we will explore the process of mourning further in Chap. 3, it’s important to note here that loss is not an isolated phenomenon. If the relationship with the self is informed by interactions with others, then so too would the relationship with loss be informed by the culture of a person’s community. In other words, we make sense of a loss event in part based on the cultural understandings of loss. Integration occurs only when we explore our own relationship with a loss event, how loss changes our inner relationships and how, as a result, our community or relationships with others are changed. For a variety of reasons, we will explore in Chap. 3, sometimes integration does not occur at the precise moment in our life that a loss event occurs. Our relationships with losses are multidimensional, rather than categorical (i.e., present or absent). People living with diseases where dementia symptoms are present are no different. By understanding loss as a feedback system, we can begin to recognize the evolving nature of the self as an internal relationship (a person with dementia symptoms integrating loss in this present moment) interacting with external relationships (how others perceive and interact with a person living with dementia symptoms). It is far too simple of an explanation to focus solely on the inward cognitive, emotional, and spiritual processes of a person also living with dementia symptoms (van Wijngaarden et al., 2019). Instead, we must recognize the biopsychosocial and cultural contexts within which the mind-body relationship shifts occur (Vosman, 2017). Simply put, experiences with grief and dementia are directly influenced by others’ responses and interactions with the person living with both (unintegrated grief or loss and dementia symptoms), and who may also be engaged with identity establishment. As much as I am emphasizing the roles of our relationships with others and the quality of these relationships informing the relationship with the self, we must ultimately tune into the core of our being. Allow the static to fade and the internal frequency to play. All too often we seek answers outside of ourselves when in fact, we all are born with a roadmap… we must trust and learn to read it. In part, this book is intended to be your companion atlas on motivating, encouraging, and supporting yourself or others in the development of trust to understand the mind-­ body roadmap. To bridge practice and research, I will offer vignettes throughout this book to illustrate key concepts. My hope is that these vignettes will make salient the evolving nature of both grief (strictly of the unmetabolized or unintegrated type) and dementia symptoms (regardless of disease etiology: Alzheimer’s, frontotemporal, Lewy bodies, vascular, etc.). Additionally, using composite vignettes protects the anonymity of current and past participants. To illustrate the above points, let us consider two similar and yet drastically different scenarios – the main difference resting on the cornerstone of support or neglect.

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1 Introduction Parvati, was born to an Indian family who immigrated from the Malabar Coast of India to Alabama in the United States, 1  year prior to Parvati’s birth. Six months after Parvati’s birth, her father died. She became interested in yoga at age 31, after meeting her partner Rosie who practiced regularly, and encouraged her to develop a daily practice. At age 78, Parvati was diagnosed with Lewy Body Disease. Although her mother was alive, there was an absence of a relationship for the past 50 years due to Parvati being a lesbian and her mother disapproving. She also had four brothers and three sisters that lived nearby. They all communicated with each other regularly. Parvati relied heavily on her sadhana for daily strength and looked inward for answers to navigate her diagnosis. She lives at home with Rosie and her siblings visit regularly. She commented, “I have so much to do before I die. I have many postures I keep trying to improve and expand the edges of my practice.” Marcus, age 81, was born into a family that consisted of a mother and father and 7 siblings. The previous two generations were also Chicago natives all from Bronzeville. Marcus is the second youngest and he has two siblings alive today. He and his wife had 5 children. Marcus’s wife died of emphysema 2 years ago. Two of Marcus’s children were killed in a car accident when the family was returning from a summer road trip and their vehicle was struck by a drunk driver. One of Marcus’s son’s died by suicide. Two of his children live in countries outside of the United States and return home once every other year and stay one week, although neither have returned to Chicago since their last visit in February 2020. When Marcus was 77, he was diagnosed with unspecified neurocognitive disorder after hitting a cyclist. Marcus moved into a group home with 5 other adults. Due to limited financial resources, he moved 150 miles from his hometown. His children and siblings who live in Chicago, each visit once a month. Kwanzaa ended three days ago and Marcus remarked, “No one here even knows what it is. Maybe I don’t either anymore. You know, I was just living my life, as sad as it was, there were some sunshining times, and then it all changed and now I’m here, in this room and really? Really, what’s the point?”

The above composites offer two narratives of diagnosis and also represent a lifetime of losses. We learned from Parvati’s life that although she experienced loss, she also felt supported, nurtured and believed there was a purpose for her life. She had goals of postures she was practicing and trying to deepen – “expand the edges of [her] practice.” Marcus, expressed feeling isolated and did not hold any expressed goals. Each of their lived experiences with diagnosis could have been different had there been more or less support. Throughout this book, you will find composites to help you humanize the grief-dementia experience. These composites also serve as a reminder that one person’s grief is that person’s grief (Allport, 1968). One person’s dementia symptoms are that person’s dementia experiences (Kitwood, 1993, 1997). In other words, hear and see a person first and resist defining a person by loss episodes or disease diagnosis.

Historical Perspective of Dementia Diagnosis In order to fully understand the history of dementia, we must first understand the history of Alzheimer’s Disease (AD). This historical perspective, within a clinical, research and community-setting framework, is paramount to untangling the complexities of currently available and burgeoning nonpharmacological therapies. AD

Historical Perspective of Dementia Diagnosis

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has a fairly short history, beginning a bit more than 100 years ago, and having a focus greatly leaning toward cognitive deficits and strong roots within the domain of memory functioning. Dementia on the other hand, can be traced back to its first appearance in the French medical writings of Philippe Pinel, in 1797. Jean Etienne Dominique Esquirol, a disciple of Pinel, wrote: “Dementia is that disabilities are shown in discernment, intellectual ability and will due to brain diseases, and is to lose joyfulness enjoyed and is that the rich become poor” (1838). Even earlier still, were seventeenth century discussions of vascular dementia, by physician Thomas Willis, who described the condition as: “Dullness of mind and forgetfulness and then afterwards … a stupidity and foolishness. In many, stupidity has accompanied the palsie or has gone before apoplexy” (1672). It’s interesting and worth noting here that the meaning of the word apoplexy has, according to OED, informally carried the meaning of “incapacity or speechlessness caused by extreme anger” (Oxford University Press, 2023). For some cultures, anger is a natural emotion expressed in the grieving process. We will delve further into this discussion of anger and grief in Chap. 3, when we situate these emotional processes (grief, anger, and others) within a cultural context and global understanding of human emotions. To be clear, dementia is a collection of symptoms that accompany a disease although often dementia and Alzheimer’s are used interchangeably. Returning to our discussion of a historical perspective on one component of this book, the term “probable AD” was introduced in 1975, when the Mayo Clinic adopted the Hospital Adaptation of the International Classification of Diseases, Second Edition (ICD; St. Sauver et al., 2010). Access to expensive technology and testing resources was fairly limited and highly specialized. In 1984, the first diagnostic criteria for probable Alzheimer’s Disease was published (McKhann et al., 1984). Additionally, it was in the 1980s that the Diagnostic and Statistical Manual of Mental Disorders (DSM) published criteria for dementia (American Psychiatric Association, 1987). The manual guided researchers and clinicians to define dementia as: 1 . must be impairments in memory, and 2. impairments in ONE additional cognitive domain. By the 1990s, public interest was growing, with advocacy groups and public policy officials pushing for increases in funding for research and direct services. Due to disparaging connotations of dementia, the term AD quickly became the leading term used in communities from the scientific to government to household. More specifically, dementia without an obvious pathological alternative became synonymous with AD. Nonetheless, diagnostic criteria for dementia shifted in the ICD-10 with the following guidelines: 1 . must be impairments in memory, and, 2. impairments in TWO additional cognitive domains. By 2010, the National Institute of Health on Aging and the Alzheimer’s Association used the following criteria (Albert et al., 2011):

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1 Introduction

1. impairments in TWO cognitive domains. In the DSM-5, it’s important to note that the generic term of dementia was replaced with Major Neurocognitive Disorder (American Psychiatric Association, 2013). Major Neurocognitive Disorder requires the meeting of four criteria: 1. Marked difference in cognitive function in one or more cognitive domains based on (a) an expressed concern by the person, a clinician, or some other knowledgeable individual AND (b) documentation of change in impairment by use of standardized neuropsychological testing. 2. Activities of daily living (basic or instrumental) are disrupted and unable to be completed independently. 3. Delirium must not be the reason for cognitive changes. 4. Changes in cognitive functioning must not be the result of another mental disorder (e.g., schizophrenia, depression). When these four criteria are met, then the clinician must specify the etiology. It has since been updated in the DSM V-TR, regarding etiology, that if diagnostically it is written “due to” then the evidence must strongly connect the medical condition to the cognitive changes (American Psychiatric Association, 2022). Otherwise, a possible or probable qualifier must precede the medical condition. While etiological clarification may prove helpful in the development of individualized therapeutic approaches, often is the case that absolute etiology can only be established in postmortem. Although it falls a bit outside of the scope of this section, it is worth noting here that in the future, for some who have access to advancing technologies there is the possibility of diagnosis prior to cognitive decline. Current efforts are under way to use brain imaging, biomarkers, and blood tests in the development of diagnostic tools for various etiologies of minor and major neurocognitive disorders (LaJoi et al., 2020). Take for example, an established link between increased levels of both serum interleukin-6 (IL-6) and levels of sE-­selectin (glycoprotein that is present because of an expression of inflammatory cytokines resulting from endothelial activation) and marked cognitive decline (Bradburn et al., 2018 and Wennström et al., 2015). As we will expand on in greater detail in Chap. 3, similar increases of both biomarkers are present in people experiencing grief (Brown et  al., 2022). These findings lead me to question the massive and yet unknown impacts of grieving and traumatic episodes. This book is focused precisely on these interactions: grief and trauma symptoms within the body of a person diagnosed with a neurocognitive disorder. As we are nearing the conclusion of this section on exploring the historical significance of dementia diagnosis, it is worth noting, the ICD-11 was adopted by 72nd World Health Assembly in 2019 and came into effect January 1, 2022. Except, the United States is the only industrialized nation still utilizing ICD-9 codes for morbidity data and ICD-10 for mortality. According to APA, ICD-10-CM (clinical modification) descriptors for some etiologies of Minor and Major Neurocognitive Disorders went into effect September 2022. We will see a return to this discussion

Diseases with Dementia Symptoms

11

in Chap. 3, when we look at DSM-5-TR update to Major Depressive Disorder in general and more specifically Prolonged Grief Disorder (2022). Last, any historical account of dementia, regardless of brevity, would be incomplete without mention of the very first person, Auguste Deter, 51 year-old female, who is considered the first patient of Dr. Alois Alzheimer. Deter was originally a student of Alzheimer’s grandfather, Johann. In 1907, upon accepting the gift of Deter’s brain posthumously, Alzheimer began studying sections and cross-­ referenced with medical records (Alzheimer, 1907). He detected a thinning of the cerebral cortex (Yang et al., 2016). We have since learned that grief also affects the neuronal and structural appearances of both the cingulate cortex and the parahippocampal gyrus (Kakarala et al., 2020). I will continue to draw parallels between what we are seeing in two areas of research: dementia and grief. Much of the experiences with grief and dementia are culturally situated as we will see in Chaps. 3 and 4, respectively. Therefore, maintaining high standards of cultural competence when working with people who are living with both is crucial. Before discussing modifiable risk factors for later life dementia symptom presentation, we can now turn to exploring diseases with accompanying dementia symptoms.

Diseases with Dementia Symptoms According to a fact sheet produced by WHO, dementia is a syndrome (2023). Typically, the nature of this syndrome is progressive and is inclusive of changes that exist outside of the standard aging process. We could also turn to the Alzheimer’s Association who defines dementia as a general term for memory loss and other cognitive abilities serious enough to interfere with daily life (2023). Last, we can consider the definition offered by Alzheimer’s Disease International (ADI), who clarifies that “dementia is an umbrella term for a collection of symptoms that are caused by disorders affecting the brain and impact on memory, thinking, behaviour and emotion” (2021). It is important to understand the widespread bodily systemic reach of dementia symptoms. In other words, changes are not confined to the brain. Although dementia discussions often focus on the brain  – and cognitive and memory changes that manifest  – it can be helpful to understand the breadth and reach of these diseases. To clarify, memory is one type of cognitive process. Other types include learning, attention, and language. In Chap. 6, we will return to the mind-body changes that can occur with the typical aging process, with dementia symptoms, as well as trauma. It has already been mentioned, and we will see repeated throughout this book, a thread of unique individual experiences that stitch together the events of aging, grief, disease, and death. Below we will explore a bit about diseases with accompanying dementia symptoms: Alzheimer’s, Lewy bodies, Parkinson’s, frontotemporal, vascular, multiple sclerosis, normal pressure hydrocephalus, Creutzfeldt-Jacobs, syphilis, Huntington’s, Korsakoff, posterior cortical atrophy, and Down syndrome.

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1 Introduction

Alzheimer’s Considered the most prevalent of all diseases with dementia symptoms, AD contributes to about 60–70% of all cases globally. With this disease, it is believed plaques and tangles in the brain impede the ability for neurons, or nerve cells, to communicate with organs and muscles. For more than three decades now, most researchers assumed that the cure for Alzheimer’s lay in getting rid of the build-up of the proteins in the brain: amyloid beta (Aβ). Eliminate that bad actor, and the disease would be vanquished, the thinking went. Then, when that failed, researchers thought they had to get rid of the Aβ earlier—let it spread too far and clog up too much and there was no way the brain could bounce back. Recently, a group of researchers posited that this hypothesis is viewing the process from the wrong direction. Instead, they suggest neuronal stress in the Central Nervous System (CNS) occurs and in response to this, the brain creates Aβ to protect the system (Decourt et al., 2022). In other words, Aβ is part of the process in attempts to establish systemic equilibrium. Furthermore, Decourt and team have suggested, it is also quite plausible that with systemic disruption, other physiological dysfunctions are occurring in relation to the CNS, such as oxygen delivery disruption (2022). We will return to the significance of this when we discuss the practice of pranayama (Sanskrit for breath extension) in Chap. 6 and the application in the case composite of Vikash. The above simply provides a very small glimpse into theories on etiology of AD. A larger discussion falls outside the scope of this book. If you are interested in reading a thorough review of emerging hypotheses that have surfaced in the past 10 years, Liu and colleagues by far offer the most extensive (2022). They are thorough in their discussions, differentiate between hypotheses and causative factors and offer a pharmacological treatment solution of using Selective Serotonin Reuptake Inhibitors (SSRI). One interesting study looked at 32 patients at early symptomatic AD stages, where researchers use magnetic resonance imaging (MRI) to test if Aβ and tau-PET could be used as predictive agents in future brain atrophy (La Joie et  al., 2020). Longitudinal MRI scans were obtained on day of testing and 15 months later. One particularly interesting finding is the relationship between initial tau-PET imaging and later atrophy specifically in younger tests subjects. What happens in older subjects that reduces this predictive accuracy?

Vascular When there are changes in the blood supply to the brain, this can create vascular dementia symptoms. This is considered to be the second most common disease with dementia symptoms (O’Brien et al., 2003). Thus far, there have been two types of vascular dementia identified. About 80% of cases are attributable to the internal carotid arteries and the other source is the vertebral arteries. It has been suggested

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13

that in people who are diagnosed with vascular cognitive impairment and who also experience visual hallucinations, then neuropsychiatric symptoms or behavioral and psychological symptoms of dementia (BPSD) present at a higher rate (Chen et al., 2021). We will return to a discussion of sub-symptoms of BPSD in other sections. You can also refer to Chap. 3 for considering BPSD through a grief lens.

Lewy Bodies Similar to research efforts on other forms of dementia, the focus of Lewy bodies dementia (LBD) has predominately been on the disordering of the brain and presentation of alterations in cognitive functions (thinking, reasoning, and processing). Basically, it is believed there are aggregates or deposits of protein (α-synuclein) in nerve cells in the brain (Outeiro et al., 2019). LBD is considered both a progressive and degenerative disease. While initial diagnostic criteria for probable and possible dementia of the Lewy bodies type was introduced in 1996 (McKeith et al., 1996), it was later revised in 2005 and then again in 2017 (McKeith et al., 2017). These diagnostic changes reflect the scientific community’s expansion in learning about greater precision in clinical representation differentiation and introduction of new technologies. Over the course of a fairly short time span, much has been learned on the front of pathophysiology and delineating between various clinical manifestations of LBD (Masuda-Suzukake et al., 2014; Kim et al., 2019; Uchihara & Giasson, 2016). For example, between 2005 and 2017, the diagnostic feature of rapid eye movement and sleep behavior disorder shifted from suggestive to a clinically required feature (Yamada et al., 2020). The most significant required feature are cognitive changes which are thought to be present before other symptoms. When we move out of the brain, in LBD we also see other changes in the mind-­ body landscape. For example, there is synaptic and neuronal death in the central and peripheral nervous systems. There are also changes in the structure and function of the heart (Orimo et al., 2008). We also see enzymatic changes, for example with tyrosine hydroxylase (TH). This change creates a cascading effect where then there are conversion changes when TH supports the conversion of the amino acid tyrosine into dopamine. Emotional, behavioral, and physical movement is dependent upon the communication, or chemical release, between the axon and dendrite.

Frontotemporal When the frontal and temporal lobes of the brain are damaged, often this type of dementia is diagnosed. Based on current research efforts, there have been three clinical subtypes identified: behavioral variant (bvFTD), semantic variant (svFTD), and progressive non-fluent aphasia (pnfaFTD). In bvFTD, people may recognize

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1 Introduction

behavioral and personality changes in themselves or others. These cues may signify a want to interact with changes in a way that can potentially alter the disease trajectory. With svFTD, it may become apparent that the ability to use or understand language is different than a previous time point. In the third clinical type, pnfaFTD, a person’s ability to speak is severely altered. In short, the precise cause of FTD is unknown. Researchers have linked certain subtypes of FTD to mutations on several genes (Wagner et al., 2021). Some people with FTD have tiny structures, called Pick bodies, in their brain cells. Pick bodies contain an abnormal amount or type of protein. These proteins clump up similar to how when a kidney stone forms.

Parkinson’s Among the collection of progressive neurological conditions, Parkinson’s disease dementia (PDD) is one of them. I am including the discussion of PDD immediately following LBD because there is much overlap between the two. In people affected by Parkinson’s, similar to LBD, dopaminergic neurons are interrupted. Nerve cell damage in the brain causes dopamine levels to drop. As we learned above, this is in part responsible for communicating movement of muscles. Similar to LBD, PDD has seen many iterations of diagnostic classification of probable and possible (Dubois et  al., 2007). It’s interesting to note, from a historical perspective, the disease is named after the English doctor James Parkinson, who published the first detailed description of the condition, An Essay on the Shaking Palsy, in 1817. It’s always fascinating to read the original accounts of current diseases affecting us. Now, in a clinical setting, LBD is used when dementia occurs before or concurrently with involuntary muscle movement, whereas PDD is used when dementia symptoms present in a case of well-established parkinsonism symptoms. This differs slightly in research settings. An often repeated guideline within the body of literature distinguishing LBD from PDD, is a timeframe of 1 year between onset of dementia and parkinsonism (Yamada et al., 2020). In other words, LBD is seen as being the most considered diagnosis when dementia symptoms present within or before 1 year of parkinsonism symptoms. As we’ve seen, and will continue to see, there is much to learn by way of clinical variations, classifications, and manifestations.

Multiple Sclerosis This disease impacts the CNS, most notably as acute inflammation. While not all people diagnosed with MS experience cognitive impairments, about half of people do, some estimate this to be higher (Sumowski et  al., 2018). In one study of 23

Diseases with Dementia Symptoms

15

subjects diagnosed with MS, 60.8% met criteria for chronic progressive cognitive impairment (Staff et al., 2009). The other study participants experienced subsequent relapsing of their cognitive functioning. Other researchers highlight the importance of investigating the timeframe directly before a relapse occurs and developing novel therapeutic approaches to diminish the effects of impending cognitive decline (McKay et al., 2022). The types of cognitive functioning typically impacted by MS include complex attention, information processing speed, (episodic) memory, and executive functions.

Creutzfeldt-Jacobs There is much to know about the human body. One area is the function and development of prion protein throughout the body. With this neurodegenerative disease, Creutzfeldt-Jacobs (CJD), there is thought to be a rapid onset, rapid progression, and rapid deterioration. Essentially, prion proteins fold into abnormal shapes in the body and this triggers prion protein in the brain to fold into the same abnormal shape (Reis et al., 2015). There is substantially less research on dementia symptoms that are associated with CJD, other than to say that they are quite severe. In particular, neuropsychiatric symptoms (NPS) or BPSD develop aggressively and tend to intensify with time. It has been suggested that death can be anticipated within 1 year of diagnosis.

Neurosyphilis A common theme among all of these diseases that we may recognize, is the importance of early detection. Combined with early recognition of diseases is also treatment. This could never be truer than in the case of people affected by neurosyphilis. When people report progressive cognitive and behavioral symptoms, combined with results from brain imaging, treatment should begin immediately. As researchers have suggested, the moment at which MRI scans show mesiotemporal abnormalities and hippocampal atrophy then treatment should begin (Mehrabian et al., 2012). As we have discussed previously, the body wants to be in a state of health, balance, and equilibrium. While cognitive decline is present in both early and late stages of this disease, sometimes mimicking AD, when treated with intravenous penicillin then cognitive functioning resumes to baseline (Vargas et al., 2000). In other words, this is one disease where dementia symptoms abate when the disease is treated in an aggressive and timely manner. Interestingly, prior to Alois Alzheimer making his mark in foundational medical texts with his pathological discoveries of dementia, he was committed to understanding syphilis.

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1 Introduction

Normal Pressure Hydrocephalus This condition presents as changes in memory and sometimes is misdiagnosed, although it is reversible with appropriate treatments. What happens is an accumulation of cerebrospinal fluid (CSF) exerts pressure on the ventricles of the brain. Although there are other reasons for NPH such as brain injury, tumor or inflammation, the cause for the CSF buildup has yet to be discovered. Nonetheless, the pressure manifests as gait changes, urinary incontinence, and challenges with thought processes. The Alzheimer’s Association indicates that less than 20% of people affected by NPH are properly diagnosed (2011). One reason for this is the similarity in clinical presentation to three other diseases: Alzheimer’s, Parkinson’s, and Creutzfeldt-Jakob. Concerted research efforts have led to identifying four symptoms that most often present in NPH cases: gait changes, slowing of thought process, urinary incontinence, and short-term memory loss (Kang et al., 2018). When symptoms present, an MRI confirms findings suggesting NPH and an evaluation is conducted, then typical treatment is surgical placement of a shunt. Once complete, symptoms typically abate.

Huntington’s Disease People diagnosed with this disease have a single defective gene on chromosome 4. The defective gene codes the blueprint for a protein called huntingtin. This protein’s normal function is not yet known, although the reason for naming it “huntingtin” is due to scientists’ identifying its defective form as the cause of Huntington’s disease. Defective huntingtin protein leads to brain changes that cause abnormal involuntary movements, a severe decline in thinking and reasoning skills, and irritability, depression, and other mood changes. To clarify, chromosome 4 is one of the 23 human chromosomes that carry a person’s entire genetic code. It is worth noting a bit about the sequencing of the human genome, known as The Human Genome Project. In a very short period of time, an international team of researchers embarked on an ambitious journey to create a map for the 3  billion DNA building blocks in the human body (Collins & Fink, 1995). This work officially started in October of 1990 and concluded 13 years later in April 2003, although clearly the road was paved based on much earlier work. In 1986, there was a direct linkage between chromosomes and disease discovery.

Posterior Cortical Atrophy When people are affected by this, they experience a loss of brain cells in the back of the brain. In particular, there is atrophy in the region responsible for visual processing and spatial reasoning. This changes a person’s ability to process visual and

Diseases with Dementia Symptoms

17

spatial information. For this reason, this is sometimes referred to as a visual variant of visual-spatial variant (Galton et al., 2000). Diagnostic criteria was published in 2017, with subtypes being proposed for future consideration for clinical differentiation (Rajaram Manoharan & Munakomi, 2023). While this typically has an insidious onset with gradual progression of symptoms, there are a wide range of cognitive features that can present. There are a variety of pharmacological and nonpharmacological treatments suggested (Beh, 2015). As we have seen with other diseases, early detection is tantamount to preserving a sense of self and maintaining optimal quality of life.

Korsakoff Some people who have a vitamin B1 (or thiamin) deficiency (typically associated with alcoholism) also experience damages to nerve cells and supporting cells in the brain and spinal cord. According to a fact sheet produced and published by Johns Hopkins Medicine, there are other contributing medical reasons why someone might develop Korsakoff syndrome and that may be because of dietary deficiencies, prolonged vomiting, eating disorders, or the effects of chemotherapy (2023). Damage is associated with parts of the brain that are responsible for memory. Typically, Wernicke’s encephalopathy is a precursor and can be seen as changes in a person’s gait and their generation of false memories (confabulation).

Down Syndrome This condition affects people who are born with an extra chromosome. There are variations on how this can be present in the chromosome sequencing. Sometimes all cells within the body contain a third copy of chromosome 21 (rather than 2), other times only some cells in the body contain a third copy of chromosome 21, and other times there are other variations. As Kevin Iannucci, in the movie Champions says, “I’m your homey with an extra chromie” (2023). It has been estimated that people living with Down syndrome, who are ages 50–59, have a 40–80% chance of being diagnosed with AD (Fortea et al., 2021; Salehi et al., 2016; Holland & Reinmuth, 1998). To put this into perspective of global counts, this is double the equivalent risk of people ages 90–99 who are diagnosed with AD or experience other dementia symptoms. In sum, dementia, though it is commonly conflated with AD, is a condition with numerous underlying causes. In other words, a collection of symptoms of a disease. As we saw in the above section, there are a number of diseases that present with dementia symptoms, and as we will learn in future chapters, there are numerous reasons for changes in the mind-body landscape. In particular, there are times when cognitive changes are attributable to a reason entirely separate from a disease with

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1 Introduction

dementia symptoms. By no means is the above list of diseases intended to be exhaustive, rather the purpose of offering a very brief overview of each is to move us away from grouping all dementia symptoms into a single category. While grouping certainly serves its purpose, as we will see in Chap. 6, there may be benefits to understanding as much about dementia etiology as possible. One reason for including a section on diseases is to have more information in the development and application of individualized approaches that result in people thriving with dementia symptoms. Further, understanding disease etiology highlights the importance of creating individualized approaches when working with people living with dementia symptoms. Disease diagnosis is not the end of story. There’s more. There are modifiable lifestyle factors that, depending upon our relationship with these areas, add or subtract from our overall health. We can turn our attention to understanding the twelve currently identified factors that have been linked with an increased risk of later life dementia development.

Modifiable Risk Factors Increasingly, we are seeing more research efforts and funding investigating modifiable risk factors for Alzheimer’s Disease and Related Dementias (ADRD). The list continues to grow. A team of researchers just added three more: excessive alcohol consumption, traumatic brain injury, and air pollution—to the preexisting known nine. Those nine modifiable lifestyle factors are education, hypertension (high blood pressure), hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact (Livingston et  al., 2020). There are other research efforts underway to establish causal links between specific areas. Although at present these causal links are absent, recent research is strongly suggesting increased risk factors between dementia development and areas such as ACEs (Tani et al., 2020) and low social contact, among others (Sommerlad et al., 2023). We will expand on the literature on modifiable risk factors in future chapters. For now, let’s turn our attention to the structure of this book.

Structure of Book My hope is that this book will empower you to consider your own hidden experiences as well as those of people living with dementia. Please, move past diagnoses. Start with getting to know a person’s name. Learn about their joys, interests, frustrations, accomplishments, losses, fears, hopes, desires, and anything else the person is motivated to share. Listen. Observe. Get to know the person. Connect. Allow space for the person to develop aspects of their identities. These identities are informed and shaped by the important grief work on acknowledging, validating, and integrating loss episodes within one’s current life narrative. Maintaining a commitment to

Structure of Book

19

supporting people’s sense of thriving in the process of identity development far exceeds the importance of promoting a single grief model. This text is intended to inspire readers to navigate agency and identity development, by bravely traversing a landscape of losses, set against a backdrop of bodily systemic imbalances or dementia symptoms, with an aim of reestablishing homeostasis in the body. This book expands on evidence-based, nonpharmacological, person-centered dementia therapeutic practices, by offering an innovative model to shift our collective relationship with the experience of living with dementia, as well as prevent people from developing dementia symptoms. First, we can begin by framing the conversation as one of dementia health rather than dementia care or treatment. The therapeutic particulars of a novel integrative psychotherapy, Dementia Grief Therapy (DGT), will be laid out. This therapeutic approach transcends the dementia divide: us (non-diagnosed) and them (diagnosed), by focusing on key aspects of psychological empowerment (sensemaking, consciousness-raising, strengths, and capabilities) and emphasizing these as a shared common space. By understanding BPSD, and neuropsychiatric symptoms (NPS) of dementia as a psychological and physical manifestation of unmetabolized grief, you will become more curious about specific therapeutic tools to use to navigate and interact with unmetabolized loss episodes through a process of recognition/acknowledgement, validation, and integration. At present, the concept of “dementia grief” objectifies the person diagnosed by focusing on grief for the person (as experienced and observed by others), rather than compassionately acknowledging the grief of the person. This book informs readers on best practices by presenting compelling data on three separate case composite studies and two different small group studies. It creatively, mindfully and methodically, offers a therapy model to be delivered in community and residential settings, general practitioners’ offices, home healthcare settings, long-term care communities (LTCC), memory care, day senior centers, gero-psychologist’s private practice and everywhere in which trained professionals are present. Considerations of the impacts of COVID-19 and exploring movement along a trauma-resilience continuum are offered within the context of delivering DGT. From a biopsychosocial perspective, with models of change spanning from micro (individual therapy practices) to macro (government policy considerations), as well as being culturally situated within a global understanding of the lived experiences of grief and dementia symptoms, this book is an absolute must for all students, academics, researchers, practitioners, advocates, and policy makers with a vested interest in people currently living with dementia as well as people passionate or curious about reducing your own risk of later life dementia development related to unmetabolized trauma. In some respects, this book is an invitation to join in collaborative efforts to reduce human suffering and increase flourishing. This book is arranged so that you feel supported throughout your journey of framing or reframing your conception of a person living with dementia. It’s obvious you are passionate and hold human dignity as having primary importance. You will become intimately familiar throughout this text, with some deliberate, selective, and specific choices of language that differ vastly from practice, the

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1 Introduction

literature and advocacy and policy discussions. As a starting point, you may have noticed my mention above of a participant or collaborator. While this is not new nor an original idea, it is worthy of highlighting. As conduits of change, we must abandon all egoistic claims of holding specialized knowledge. Instead, recognize that both collaborators (you and the person living with dementia symptoms) hold awareness of unique knowledge and when combined results in less suffering and more harmony. Hence the reason for beginning a relationship from the place of collaboration. This formation of relationships must be genuine despite the typical narrative in practice as well as in the literature, of managing, caring or making decisions related to people living with dementia symptoms. No one wants to be told what to do all of the time. Each chapter will begin with a small and important section on Key Points, by bulletining a few areas to be covered in the chapter. Throughout each chapter will be sprinkled composite narratives to aid in your comprehension of details. Each chapter will end with two sections: Learning Objectives and Further Inquiry. The stated learning objectives are a way for you to check-in with yourself about your comprehension of the chapter. This can be cross-referenced by the bullet points listed at the beginning of each chapter. The final section of each chapter is Further Inquiry—a place where you will find questions and other areas to ponder.

Part I: Foundations for Developing Dementia Health This first section (Chaps. 1, 2, 3, and 4) will lay the initial groundwork for situating a conversation about DGT, by inquiring on three areas of global and cultural understandings of the lived experiences with dementia symptoms: social justice, grief-­ trauma impacts, and dementia. The field of dementia health is begging for the introduction of new and innovative approaches. Some treatment methods have focused on maximizing independent functioning of activities of daily living (ADL), at the expense of people’s emotional processes. ADLs are typically measured by an observer providing a perceived value on the quality of life. Although in the past 20  years, we have begun to see a shift in the narrative away from surviving and toward thriving (Bergland & Kirkevold, 2006; Björk et al., 2017). One way to transition away from a medical model and toward a model of health, is to appreciate all mind-body systems. An optimal functioning integrative model of health is predicated on a commitment to honoring people’s trauma histories and engaging in grief inquiry when traumas have blocked secure relationships from forming in the body. A recognition and validation of an amalgamation of a lifetime of unmetabolized losses can help shape and inform the grief integration process. Approaching dementia from a health perspective reinforces the significance and value of a person. Framing dementia within a model of health also transcends the us-them divide. The term dementia health may also be seen as a linguistic attempt to destigmatize living with dementia symptoms. An emphasis on health moves the focus outside of the mind and into the body.

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Chapter 1: Introduction I have made an attempt to at least introduce and briefly familiarize you with key areas that will be covered in the next chapters. To this end, it may be important to acknowledge losses experienced prior to receiving a dementia diagnosis, in instances where the losses remain unintegrated in one’s life. In this chapter we also covered the history of dementia and briefly highlighted several diseases with dementia symptoms, followed by an introduction to modifiable risk factors for later life dementia development. Chapter 2: Social Justice We will discuss a social justice framework of dementia health, why acknowledging a history of trauma coupled with increasing access to grief-based therapies is necessary in any just society. First, we will explore dementia and a subset of symptoms, behavioral and psychological symptoms of dementia (BPSD) by using three models: medical, integrative, and rights-based. Second, we will explore why highlighting agency and identity are important factors within dementia health by grounding our conversation within the exploration of three key areas: multimorbidity, symptomology, and resilience. Third, we will explore two components of the dimensions of social justice model: liberatory critical consciousness and empowerment, which are most applicable to dementia health and in particular the development of DGT. Fourth, we will explore modifiable lifestyle factors from the perspective of social justice and the role access to health promotion resources play in individual and community health. Last, we will investigate why considering the history of traumatic experiences is a necessary and important component to the field of dementia health as well as the lived experience with dementia symptoms.  hapter 3: Grief Recognition Within Dementia Health: C A Global Perspective We will take up the case of dementia grief globally. WHO and International Classification of Diseases (ICD), the international standard for reporting diseases and health conditions, offer guidance on diagnostic conceptualization of grief and dementia (2019). The main aim of WHO is to “improve clinical utility and international applicability” (2020). Having an agreed upon global agenda of dementia proves beneficial at the individual and policy levels. With respect to grief therapies, much work needs to be done on culturally appropriate therapies – pure linguistic translation of grief questionnaires and dementia screening is not sufficient for adequately meeting the needs of people in countries outside of the United States. In this chapter, we will begin with a historical perspective of grief. We will also respectfully consider cross-cultural perspectives on grief as well as dementia grief. We will cover many components of the grief process, including using a systems

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1 Introduction

approach to understand grief. I will tease out the finer parts of a repression of anger, how this might block the flow of grief and how this may in turn present as BPSD. We will turn toward the possible links between complicated grief and dementia, by utilizing Worden’s paradigm of complicated mourning reactions. I will offer a proposed theoretical model of dementia mourning. We will then engage in a brief cross-cultural exploration of grief expressed in Japan, India, and the United States. This will provide some context for understanding five existing theoretical models of dementia grief, by exploring background, structure, and application. We will conclude by considering BPSD from a grief perspective. Chapter 4: Demystifying the Dementia Divide We will explore the literature on therapeutic approaches for working with people living with dementia symptoms, as well as existing interventions for BPSD. Both of these areas will be explored within the context of a global community, by grounding our discussion in WHO’s Global Action Plan on Dementia (GAP). We will place the concepts of dementia – first, as a medical diagnosis and second, as the lived experiences with dementia symptoms – on a global stage by exploring GAP’s seven action steps within the context of three counties: Japan, India, and the United States. A comprehensive review of dementia will prepare us for moving into what we can consider as a pre-diagnosis phase: testing, screening, and assessment. We will pay particular attention to cultural relevance and appropriateness of cognitive assessments. We will then move our discussion to the post-diagnosis process by discussing death, dementia, loss, and life. We will gain and strengthen our understanding of several therapeutic approaches that can be adopted to support the dementia grief integration process. By exploring the historical roots of attachment theory and the roles the self-other dyad plays in living with dementia symptoms, we will be prepared to conceptualize the process of change from micro to macro levels. We will conclude this chapter by considering necessary and important areas of dementia grief work.

 art II: Proposed Model of Therapy: Global Ethics, Therapeutic P Particulars, and Case Composites The second section (Chaps. 5, 6, 7, 8, and 9) will build on Kitwood’s work of the self and human dignity by situating a novel therapeutic approach, Dementia Grief Therapy (DGT), within a process of loss recognition, validation, and integration. This section will begin with a chapter on familiarizing us with important ethical considerations when implementing DGT. We will comprehend the particulars of the model and then walk through an application of DGT using three case composites.

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Chapter 5: Guiding Ethical Considerations The intended audience of this book is wide. For readers who are living with dementia symptoms, are concerned about developing dementia symptoms, or who are currently on a journey with someone who is living with dementia symptoms, this chapter can offer hope, encouragement, and security that other possible narratives are rooted in ethically fertile ground. For professionals who are interested in implementing the DGT approach, this chapter offers some key ethical principles to consider. For readers who are advocates, politicians, and researchers, the eye toward an awareness of ethical principles strengthens your work. Informed by a feminist ethics perspective, we see where relationships as an ethical value is necessary for strengthening the therapeutic alliance. Further, dementia health professionals seek to equalize power among people by dismantling social norms and institutions that establish and maintain us-them hierarchies. One way of doing this successfully is in the application of the DGT model by applying specific ethical considerations. In the sections of this chapter, we will discuss clinical cultural competence by unpacking three concepts. We will then explore the significance of recognizing and honoring community memberships. There are many communities to which a person may belong, and we will discuss how membership in a community shapes dementia grief work. We will then consider two ethical models that you can adopt in making decisions: Four-Box Method (Jonsen et al., 2010) and The Five P Model (Gamino & Ritter, 2009). We will use a case vignette of Leonard to understand a practical application of The Five P Model. We will also ponder how perhaps blending of multiple models may be more useful or beneficial in integrative practice settings. I will then offer three other areas of ethical consideration: confidentiality, decision making capacity, and the concept of assent. Within the second area, decision making capacity, we will frame our discussion by considering three key areas: beneficence, autonomy, and informed decisions. The concept of informed decisions will be illustrated by Anne Reid Enio’s expressed end-of-life wishes through the application of the Five Wishes document. All of these ethical considerations are embedded in an appreciation for cultural competence. Chapter 6: A Proposed Model of Therapy: Dementia Grief Therapy Here we will unpack the particulars of Dementia Grief Therapy (DGT), an exploratory, nonjudgmental, integrative, person-centered, and trauma-informed approach used to support a participant along their journey to the self. It begins from a foundation of human dignity. We will begin our explorations in this chapter from a place of attachment identification as one necessary component to consider when discussing dementia health. We will explore further how grief (sympathetic-parasympathetic axis) interacts with dementia (loss-love axis), by considering the role of attachment dimensions. We will also discuss the roles of aging, trauma, and death and how these are in dynamic feedback loops within lived experiences of dementia symptoms.

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We will then discuss the necessary and distinct features of DGT. This intervention is informed by trauma, existentialism, Bowlby’s attachment theory, Adlerian psychotherapy principles, and yogic science approaches to the trauma-resilience continuum. There are five distinct clinical features that differentiate DGT from other treatment modalities: collaborators’ orientation, session location, physical activity, nature, and grounding work. One aim of this chapter is for you to comprehend a novel approach, have the necessary knowledge to implement DGT in your practice and to begin to generate a robust data set of dementia grief experiences, as informed by people living with dementia, with all of us across the globe measuring and investigating similar data points. Although DGT is by no means intended to be a manualized method of treatment of BPSD or dementia symptoms, standardized data collection of existential, movement-orientated therapy strengthens the empirical database of this proposed therapy model.  hapters 7–9: Case Composite: Masahiro, Case Composite: Vikash, C and Case Composite: Grace Using data extracted from progress log notes from three separate case composites, we will more fully understand the potential outcomes of DGT. It’s important to note that while the presented information in these three chapters is each a case composite, for the purpose of protecting the confidentiality of the individual participants with whom I work or have worked, the process of change and outcomes is based on my actual progress log notes. Therefore, the changes in cognitions, relationships, losses, and physical activity are actual changes experienced by real people. It is also important to understand that although I have signed written permission from each participant as well as their legal representative, to share their information, it is important to me to maintain anonymity by changing identifying features. Any similarities any reader recognizes between a real person and data discussed is representative of the shared human experience. In one case, we will have a unique opportunity to see the impacts of working through an acute current loss. As a direct result of state and federal restrictions with the global pandemic of COVID-19, data collection in this case was shaped by the changing regulatory and access practices enforced by LTCC from March to June 2020. In this case, data will be discussed in two contexts: as a proposed therapeutic approach to whole person dementia health practices and acknowledgement of losses and effects resulting from a global pandemic. These latter effects will be reviewed using an understanding of past losses informing current losses (Simos, 1979). Put differently, emotional processing or performance mastery of previous losses holds the potential to support the process of untangling current losses. We will see a similar process of loss navigation, only absent the context of COVID-19, due to the other two case-composites reflecting work done pre-­ pandemic. Previous losses that have not been recognized, validated, and integrated have the potential of being reactivated during a current loss episode (i.e., dementia

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diagnosis). There is emancipatory power in fully integrating both losses when access to the necessary professional grief support is available. For example, we will witness values on the Brief Grief Questionnaire (BGQ) changing with repeated administration, evidencing a potential process of grief metabolization (Shear et al., 2006). Last, we will see in the case summary, where a case could be made that when grief is metabolized and attachments are secure, then cognitive functioning increases.

 art III: Importance of Considering a History of Trauma P in Dementia Health: Evidence, Limitations and Conclusions Section three (Chaps. 10, 11, and 12) will explore the applicability of considering the long-term impacts of unacknowledged grief, by offering different perspectives on data in support of DGT. We will also discuss the cultural applicability of a variation of DGT. The intention is for this therapeutic model to fit within GAP. Specifically, DGT is a response to GAP’s action area of dementia diagnosis, treatment, care, and support, by adding additional community-based services for dementia health.  hapter 10: Evidence for Including a History of Trauma as a Risk Factor C for Dementia Development We will review data from two small studies. The first study presents data from a mapping review I conducted of the literature on articles mentioning the dorsolateral pre-frontal cortex (dlPFC), the dopamine system and its corresponding synaptic components in subjects affected by one or multiple traumatic brain injury (TBI). I will present the six overarching themes I identified and will make a case for trauma being a traumatic emotional injury (TEI) where unmetabolized grief is equivalent to TBI. With targeted therapies for TBI being extensively researched, it seems plausible and necessary to replicate studies on people affected by a history of trauma or unmetabolized grief. The second part of Chap. 10 will focus on data analyzed from 103 peer-reviewed journal article search returns on the phrases person-centered, dementia, and COVID using Boolean phrase AND. I offer a unique set of considerations for professionals. Time frame for search terms were March 2020 to March 2021. Therapeutic studies using person-centered care practices were analyzed for adherence to Substance Abuse and Mental Health Services Administration’s (SAMHSA) principles that guide a trauma-informed approach. Studies were rated on a Likert-scale in six areas. Based on study findings, I propose policy and practice standards for employees of LTCC and community-based dementia health practitioners to become adequately trained in DGT.

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 hapter 11: Limitations, Shortfalls, and Future Recommendations: C On Therapies, Policies, and Programs As thorough as I have attempted to be in the original development of DGT, providing a detailed outline for reproducibility, and detailing the process for you to implement this intervention, there exist therapeutic and methodological limitations that should be considered in future studies. We will not only discuss limitations to DGT, we will also explore limitations with my policy and program recommendations. To highlight, some general areas that should be considered in future research are systematic administration of valid and reliable grief and trauma measures; measuring loss integration from initial presentation of BPSD; and measurements of changes in the degree of human flourishing or health equity. Specifically, we will discuss the following six limitations: researcher bias, generalizability, oversimplification, measuring errors, applicability, and confidentiality. Chapter 12: Conclusion At the outset, we asked two questions: How might the lived experiences of a person with a dementia diagnosis be different when framed in terms of dementia health? And to what extent must race, culture, and community be considered in dementia grief experiences? At this point on our journey, it should be evident that more attention must be paid to integrating losses – individually and collectively. For policy makers reading this, you will see where it is necessary to increase funding for grief-­ informed therapies. Professionals will see the value in including grief questionnaires into your dementia screenings. Inclusion of grief assessment in dementia health screening is an absolute must if we are going to live in a world where we continue to transcend the narrative of tragedy into one of thriving. Individuals will be motivated to begin or continue the work of integrating unmetabolized traumas. In any just society, public awareness on trauma and unmetabolized grief as a modifiable risk factor for dementia development must be identified. In short, the proposed therapy model could potentially be used to shift the experiences of some people living with dementia symptoms from suffering to thriving. We will also briefly explore how a yogic science or Ayurvedic medicine lens may offer promise for balancing the systems stuck in a loop of retraumatizing. If indeed grief, or a traumatic emotional injury (TEI), has as deleterious of effects on the mind-body functioning as is increasingly evidenced by TBI, then in line with GAP, the relationships between trauma, grief, and dementia must be more thoroughly investigated.

Chapter Summary Just take a moment and contemplate your existence in a world where you operate from a position of feeling ignored. Have you ever felt you have contributions and yet they are not recognized or appreciated? A world where you reach for a glass of

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water and your hands don’t work like they used to and the glass slips from your grasp and shatters on the ground. And for a moment, your identity is reinforced. You feel shattered. Your life is fragmented just like the pieces of glass that when arranged in another way create a whole glass. For some people, this is their daily lived experience because of the common practices we have developed. A person’s lived experience with dementia is influenced by others’ responses to their diagnosis. Our identities are shaped by what people do and do not say and the ways in which others interact with us. Additionally, we develop mental conceptualization of what it means to live with dementia. We develop these ideas at a time when it applies to them rather than us (Langer, 1989). What happens when a time arrives when them becomes us? How do we fulfill our representative models? The individual within is what makes us who we are. The recognition and honoring of our values and beliefs is important whether living with or without dementia (Cohen-Mansfield et  al., 2006). All too often, communities, families, and some healthcare professionals treat someone living with dementia as a person who has completely lost who they are. A person has a name and it is not dementia. It’s important to know the person behind a diagnosis. Absent a person there would be no diagnosis. People have stories and histories, losses and loves. A diagnosis of dementia does not erase the cellular memory of these former identities or past episodes. You can be assured I am here to support you on your brave journey. As we set out on our adventures, we can turn to the words of Russian novelist Tolstoy who reminds us: “Yet that grief and this joy were alike outside all the ordinary conditions of life; they were loopholes, as it were, in that ordinary life through which there came glimpses of something sublime” (Tolstoy, 1980). The awe you are expressing in knowing more about grief will serve both your personal and professional self, as well as the selves you commit to joining on a journey through dementia grief. Now, grab your open heart and your curious mind. I vow to do the same. Let’s meet in Chap. 2, where we will embed our conversation of dementia grief within the context of our strong commitment to social justice. Just as Alice (in Through the Looking Glass) discovered the book Jabberwocky could be read by holding it up to a mirror, perhaps grief is the mirror in which dementia can be read.

Objectives With comprehension of details in this chapter, you will be able to: 1. Discuss the importance of language selection and bi-directional impact of word choice on both collaborators. 2. Explain the significance of the role of unmetabolized grief in cognitive functioning. 3. Discuss a bird’s eye view of a history of Alzheimer’s and dementia.

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Further Inquiry How does our current social construct of dementia symptoms limit thriving for people living with dementia symptoms? Is there value in creating shared space where the grief experiences of people living with dementia symptoms can be equally validated and coexist among others’ grief?

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Outeiro, T.  F., Koss, D.  J., Erskine, D., Walker, L., Kurzawa-Akanbi, M., Burn, D., Donaghy, P., Morris, C., Taylor, J.  P., Thomas, A., Attems, J., & McKeith, I. (2019). Dementia with Lewy bodies: An update and outlook. Molecular Neurodegeneration, 14(1), 5. https://doi. org/10.1186/s13024-019-0306-8. PMID: 30665447; PMCID: PMC6341685. Oxford University Press. (2023, March). Apoplexy, i. (b). In Oxford English dictionary. Retrieved June 7, 2022. Prigerson, H. G., Bierhals, A. J., Kasl, S. V., Reynolds, C. F., 3rd, Shear, M. K., Day, N., Beery, L. C., Newsom, J. T., & Jacobs, S. (1997). Traumatic grief as a risk factor for mental and physical morbidity. The American Journal of Psychiatry, 154(5), 616–623. Rajaram Manoharan, S. V. R., & Munakomi, S. (2023, August 13). Posterior cortical atrophy. In: StatPearls [Internet]. StatPearls Publishing; 2024 Jan–. PMID: 35593860. Reis, R., Hennessy, E., Murray, C., Griffin, É. W., & Cunningham, C. (2015). At the centre of neuronal, synaptic and axonal pathology in murine prion disease: Degeneration of neuroanatomically linked thalamic and brainstem nuclei. Neuropathology and Applied Neurobiology, 41(6), 780–797. https://doi.org/10.1111/nan.12232. Epub 2015 May 30. PMID: 25727649; PMCID: PMC4744702. Salehi, A., Ashford, J.  W., & Mufson, E.  J. (2016). The link between Alzheimer’s disease and Down syndrome. A historical perspective. Current Alzheimer Research, 13(1), 2–6. https://doi. org/10.2174/1567205012999151021102914. PMID: 26487155; PMCID: PMC6368451. Sauver, J., Buntrock, J., Rademacher, D., et  al. (2010). Comparison of Mayo Clinic Coding Systems. Department of Health Sciences Research. Accessed ­mayo.edu/research/documents/ biostat-83pdf/doc-10026715. Seiler, A., von Känel, R., & Slavich, G. M. (2020). The psychobiology of bereavement and health: A conceptual review from the perspective of social signal transduction theory of depression. Frontiers in Psychiatry, 11, 565239. Shear, M.  K. (2010). Complicated grief treatment: The theory, practice and outcomes. Bereave Care, 29(3), 10–14. https://doi.org/10.1080/02682621.2010.522373. PMID: 21852889; PMCID: PMC3156458. Shear, K. M., Jackson, C. T., Essock, S. M., Donahue, S. A., & Felton, C. J. (2006). Screening for complicated grief among Project Liberty service recipients 18 months after September 11, 2001. Psychiatric Services, 57, 1291–1297. Simos, B. (1979). A time to grieve: Loss as a universal human experience. Families International Publishing. Sommerlad, A., Kivimäki, M., Larson, E. B., et al. (2023). Social participation and risk of developing dementia. Nature Aging, 3, 532–545. Sumowski, J. F., Benedict, R., Enzinger, C., Filippi, M., Geurts, J. J., Hamalainen, P., Hulst, H., Inglese, M., Leavitt, V. M., Rocca, M. A., Rosti-Otajarvi, E. M., & Rao, S. (2018). Cognition in multiple sclerosis: State of the field and priorities for the future. Neurology., 90(6), 278–288. https://doi.org/10.1212/WNL.0000000000004977. Epub 2018 Jan 17. PMID: 29343470; PMCID: PMC5818015. Staff NP, Lucchinetti, C. F., & Keegan, B. M. (2009). Multiple sclerosis with predominant, severe cognitive impairment. Archives of Neurology, 66(9), 1139–1143. https://doi.org/10.1001/ archneurol.2009.190 Stroebe, M., Schut, H., & Stroebe, W. (2007). Health outcomes of bereavement. Lancet, 370(9603), 1960–1973. Tani, Y., Fujiwara, T., & Kondo, K. (2020). Association between adverse childhood experiences and dementia in older Japanese adults. JAMA Network Open, 3(2), e1920740. TIHF. (2016). The Irish Hospice Foundation. Available from: https://hospicefoundation.ie/ Thimm, J. C., Kristoffersen, A. E., & Ringberg, U. (2020). The prevalence of severe grief reactions after bereavement and their associations with mental health, physical health, and health service utilization: A population-based study. European Journal of Psychotraumatology, 11(1), 1–15. Tolstoy, L. (1980). Anna Karenina. Oxford University Press.

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Tziraki, C., Berenbaum, R., Gross, D., & Abikhzer, J. (2017). Ben-David BM designing serious computer games for people with moderate and advanced dementia: Interdisciplinary theorydriven pilot study. JMIR Serious Games, 5(3), e16. https://doi.org/10.2196/games.6514 Uchihara, T., & Giasson, B.  I. (2016). Propagation of alpha-synuclein pathology: Hypotheses, discoveries, and yet unresolved questions from experimental and human brain studies. Acta Neuropathologica, 131(1), 49–73. https://doi.org/10.1007/s00401-015-1485-1. Epub 2015 Oct 7. PMID: 26446103; PMCID: PMC4698305. van der Kolk, B. A. (2014). The body keeps the score: Brain, mind, and body in the healing of trauma. Viking. van Wijngaarden, E., Alma, M., & The, A. M. (2019). ‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective. PLoS One, 14(4), e0214724. Vargas, A.  P., Carod-Artal, F.  J., Del Negro, M.  C., & Rodrigues, M.  P. (2000). Demência por neurossífilis: evolução clínica e neuropsicológica de um paciente [Dementia caused by neurosyphilis: Clinical and neuropsychological follow-up of a patient]. Arquivos de NeuroPsiquiatria, 58(2B), 578–582. https://doi.org/10.1590/s0004-282x2000000300029. PMID: 10920426. Portuguese. Vosman, F. J. H. (2017). The moral relevance of lived experience in complex hospital practices. A phenomenological approach. In H. SCvd, A. Roothaan, & P. Nullens (Eds.), Theological ethics and moral value phenomena: The experience of values. Routledge. Wagner, M., Lorenz, G., Volk, A. E., Brunet, T., Edbauer, D., Berutti, R., Zhao, C., Anderl-Straub, S., Bertram, L., Danek, A., Deschauer, M., Dill, V., Fassbender, K., Fliessbach, K., Götze, K. S., Jahn, H., Kornhuber, J., Landwehrmeyer, B., Lauer, M., Obrig, H., Prudlo, J., Schneider, A., Schroeter, M. L., Uttner, I., Vukovich, R., Wiltfang, J., Winkler, A. S., Zhou, Q., Ludolph, A.  C., German FTLD Consortium, Oexle, K., Otto, M., Diehl-Schmid, J., & Winkelmann, J. (2021). Clinico-genetic findings in 509 frontotemporal dementia patients. Molecular Psychiatry, 26(10), 5824–5832. https://doi.org/10.1038/s41380-021-01271-2. Epub 2021 Sep 24. PMID: 34561610; PMCID: PMC8758482. Wallace, C. L., Wladkowski, S. P., Gibson, A., & White, P. (2020). Grief during the COVID-19 pandemic: Considerations for palliative care providers. Journal of Pain and Symptom Management, 60(1), E70–E76. Watanabe, A., & Suwa, S. (2017). The mourning process of older people with dementia who lost their spouse. Journal of Advanced Nursing, 73(9), 2143–2155. https://doi.org/10.1111/ jan.13286. Epub 2017 Mar 27. PMID: 28229487. Wennström, M., Hall, S., Nägga, K., et al. (2015). Cerebrospinal fluid levels of IL-6 are decreased and correlate with cognitive status in DLB patients. Alz Res Therapy, 7, 63. Willis, T. (1672). De anima brutorum quae hominis vitalis ac sentitiva est: exercitationes duae Londini: Typis E.F. impensis Ric. Davis/Oxon. Yamada, M., Kimura, Y., Ishiyama, D., et al. (2020). Effect of the COVID-19 epidemic on physical activity in community-dwelling older adults in Japan: A cross-sectional online survey. The Journal of Nutrition, Health & Aging, 24, 948–950. https://doi.org/10.1007/s12603-020-1501-6 Yang, H.  D., Kim, D.  H., Lee, S.  B., & Young, L.  D. (2016). History of Alzheimer’s disease. Dementia and Neurocognitive Disorders, 15(4), 115–121.

Chapter 2

Social Justice

Key Points • Why consider the rights of people living with dementia? • Significance of modifiable risk factors of dementia development? • Why consider unequal distribution of access to resources? Aiming for a minimum threshold of human flourishing holds tremendous global value for policy makers and individuals alike, and in no just society should people living with dementia be excluded. Additionally, people affected by Behavioral and Psychological Symptoms of Dementia (BPSD) or Neuropsychiatric Symptoms (NPS) of dementia should also not be excluded. BPSD is commonly conceptualized as being the most disturbing sequela of neurological disorders and are often seen as problems that need to be managed or fixed within an individual (Georges et  al., 2008). Now more than ever, societies across the globe could greatly benefit by shifting this narrative away from a deficits model and toward a model of resilience, flourishing and capabilities (Bonanno, 2004). In other words, framing a global agenda on a foundation of dementia health rather than dementia care could be one step in aligning countries with the agreed upon first action step of WHO’s Global Action Plan on Dementia (GAP) public health priority. In this chapter, we will discuss a social justice framework of dementia health, why acknowledging a history of trauma coupled with increasing access to grief-­ based therapies is necessary in any just society. First, we will explore dementia and a subset of symptoms BPSD by using three models: medical, integrative, and rights-­ based. Second, we will explore why highlighting agency and identity are important factors within dementia health by grounding our conversation within the exploration of three key areas: multimorbidity, symptomology, and resilience. Third, we will explore two components of the dimensions of social justice model: liberatory critical consciousness and empowerment, which are most applicable to dementia health and in particular the development of DGT. Fourth, we will explore © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_2

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modifiable lifestyle factors from the perspective of social justice and the role access to health promotion resources play in individual and community health. Last, we will see why considering the history of traumatic experiences is a necessary and important component to the field of dementia health as well as the lived experience with dementia symptoms.

Models for Understanding Dementia and BPSD Contemporary understandings of dementia and BPSD are largely informed by the medical brain disease model (van der Kolk, 2014). As with any model, a medical model is but one of many ways to understand and contain the nuances of a particular phenomenon (Kety, 1974). According to a research team comprised of several university employees and one employee of a Health Science Center – all of which are located in Ontario, Canada  – there are three alternative models: Recovery, SelfManagement, and Rights-Based. They suggest that based on their study’s findings “less than 10% of respondents proposed that the medical model best explained the experience of the participant ‘loving every minute’ of his life” (Astell & Hernandez, 2017). Other researchers promote a social model of dementia (Thuesen & Graff, 2022; Marshal, 2004). While others suggest a biopsychosocial model of dementia (Downs et al., 2006; Sabat et al., 2004). The usefulness of a medical or biomedical model of dementia stops at the creation of drugs developed to interact with dementia symptoms (Bond, 1992). This model can also promulgate the social stigma of dementia by emphasizing a part of the person is defective or in deficit and needs to be fixed (Walmsley & McCormack, 2016). By focusing all of our attention solely on pharmaceutical developments and imaging technologies, then attention is drawn away from the body and the very real power contained within us to heal. We might think of this as a process of deagencying, where the emphasis is on the power of something outside of our body to make a significant difference, thus undermining our agency. Dominating dementia research are practices aimed at reducing BPSD, with some relying heavily on a medical model. I argue that what in the literature we are calling BPSD is in fact a strength and also a form of agency. As we will see in the below section, I am not the only one. Others have questioned the roles some groups serve, such as the role of women. It has been argued that women exist as subordinates to uphold the dominant members – men (Miller, 1976). There is a parallel here with the role of people living with dementia symptoms to adhere to performance standards set by the dominant group (undiagnosed). Typical noted behavioral and psychological manifestations of maladaptivity are as follows: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. As we have seen above, the medical model is quite powerful and continues to be utilized as a way for understanding dementia symptoms and BPSD, and yet we can

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soften some of the jagged edges of this model by looking at it a little bit differently. We can use three parts of the human body to explain a medical model: breath, mind, and body. We’ll then use these same three areas to understand an integrative model. We will then move the discussion to considering a rights-based model for understanding BPSD. One reason for utilizing three parts of the body to understand these different models, is to see how when decisions are informed by a particular model, there is felt impact on the body.

Medical The prevailing research being churned out of the medical model produces evidence focused on deficits in the brain. For example, La Joie and colleagues used MRI technologies to investigate the β-amyloid and tau-PET of 32 patients presenting with early symptomatic AD (2020). They were looking to see if future brain atrophy could be predicted using MRI technologies. They conclude there is the strongest predictive link among younger patients. Moreover, the researchers suggest that independent of baseline cortical thickness, tau-PET was more predictive than β-amyloid. Among people affected by dementia, analysis of brain volume changes has produced disparate results. For people with Alzheimer’s there was a moderate change in volume, while for people with frontotemporal dementia, there was considerable atrophy. Another study suggested that the insular cortex is most vulnerable to witness a decrease in connective activity or even atrophy. Some research suggests a link between agitation in people with dementia and atrophy of the inferior frontal gyrus. Identifying neurological pathways of BPSD, and their neurological precepts might be another way of shifting our conceptual understandings of dementia symptoms. Additionally, narratives of Alzheimer’s that hone in on abnormal levels of the beta-amyloid protein clumping together to form plaques that collect between neurons and disrupt cell function, as well as abnormal collections of the tau protein accumulating and forming tangles within neurons that impede communication between nerve cells, rely on the explanatory power of the medical model. We can also use functions within the human body to understand the medical model. Within the medical model the breath is unregulated. Within the body the sympathetic nervous system is excited. The framing of the mind or the brain is one of diseased and medication or an intervention (pharmacological and nonpharmacological) is needed to fix it. Within the body or the heart there is extrinsic value. The body is a means to be managed or needs to perform for others – caretakers. One group is dominant and the other subordinate – clearly people living with dementia symptoms comprise the latter group. Compliance by this group is emphasized as a mark of success (Miller, 1976). In other words, a person is considered well-adjusted when they adopt the characteristics and qualities of the dominant group. In moving

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from a medical to an integrative model, one that emphasizes insight and equanimity, we will see a shift in prioritizing asking questions for the sake of asking questions – not with a goal of seeking answers.

Integrative An integrative approach is healing oriented and takes account of the whole person, and includes all aspects of lifestyle. Similarly, integrative therapies resist drawing from a single perspective and instead feel comfortable utilizing approaches that most aptly support an individual (Norcross & Beutler, 2010). There is also emphasis on the therapeutic relationship between both involved parties (in a medical model these two are referred to as practitioner and patient – in an integrative model both can be termed participants or collaborators). This model is informed by evidence and makes use of all appropriate therapies based on an individualized understanding of each participant. Within an integrative model of understanding dementia and BPSD, the breath tends to be regulated through awareness. This initiates the parasympathetic nervous system to be excited and to take the leading role. The mind can then also be regulated through the practice of present moment awareness, the monkey mind can become tamed and friendly, for the benefit of the person living with dementia symptoms. In other words, the body holds intrinsic value, where the body is valuable as a body in and of itself. The body is not defined by disease, dementia symptoms, or sub-symptoms of BPSD. Often, integrative models are informed by rights-based approaches.

Rights-Based A rights-based model promotes collaboration, value, and equality (Chopra et al., 2021). When societies emphasize a rights-based model of dementia health or with social policy development, they are also communicating the value in recognizing resilience and the power in nonverbal expression (Bonanno, 2004). There is tremendous value in our ability to “change ourselves and others by communicating our experiences, helping us to define what we know, and finding a common sense of meaning,” which directly impacts our sense and value of self as well as identity formation. We must continue to consider the potential value in hearing the grief experiences of people living with dementia. When grief is turned inside out, then this can be transformed into an untapped natural resource for people. We will explore this further in Chaps. 7, 8 and 9, when we meet Masahiro, Vikash, and Grace.

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Humans hold images and expectations of former selves, with some dreams or desires never actualizing. A necessary precursor to present moment flourishing is a mourning or recognition of the changing self. Viewing the self as impermanent – active rather than static. From a social and cultural perspective, a theory of recognition that highlights person-centered interventions is imperative for establishing full mind-body integration. A common thread woven into all theories of recognition is a self that is depicted by others as negative or unidimensional and this presents challenges for self-acceptance and self-value. When people diagnosed with diseases with accompanying dementia symptoms, space and resources to grieve are sometimes denied. In turn, one may internalize this social redistribution of resources as excluding them. If the other does not value the self, then the process of the self-­ valuing the self can be much more of an arduous task. In other words, a person living with dementia symptoms is oppressed when their grief is invalidated by others. Beginning from a place where worth and dignity are extended to all humans from the time of birth, then cognitive shifts or a diagnosis of dementia or performing of BPSD does not jeopardize any extension of rights to sentient beings. We will go into much greater depths of this topic of sentient being in Chap. 6 when we discuss yogic science. Briefly, some researchers concur with the value, rights and extent of sentient beings shall also include people living with dementia (Astell & Hernandez, 2017). Others believe people living with dementia symptoms should be excluded from the category of sentient being based solely on cognitive deficits (Scholl & Sabat, 2008). If, however, we come from the perspective of capabilities or capacity, then we can see where people living with dementia symptoms have major abilities (Sabat, 2005). We can borrow from the field of political theory, the notion of valuing capabilities. As is typically purported – there are two ways to understand human flourishing – relative or absolute. Thus, the capabilities approach is firmly grounded in a belief that by birth, even people with cognitive disabilities have the right to have their rights recognized. When people are excluded from humanity, and not provided equal justice and social protections, then society is defining a person by a disease – dementia – rather than by birth. In moving toward a more socially just society, an integrative rights-based trauma-informed model of dementia health builds on the important foundational work in the field, expands person-centered practices, validates a lifespan of losses and highlights personhood. Therapies must be culturally situated, increase mind-body grief integration, and adopt a trauma-informed approach to understanding lived experiences. We will see where the proposed therapy model meets these specifications. Further, it is only when societies begin from a foundation of capabilities, that we will collectively recover by reframing dementia behaviors in the context of agency and then rearticulate BPSD and NPS as resilience stemming from “complicated grief” (Shear et al., 2014), “prolonged grief”, “ambiguous grief” (Boss, 1999), “disenfranchised grief” or otherwise unintegrated grief episodes. To begin to understand what happens in the mind-­body landscape when losses remain unintegrated into the lifespan narrative, we can turn to the Zeigernik effect theory, where mind-body

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memory gloms onto incomplete tasks (Zeigernik, 1938). The Zeigernik effect theory, named so for Bluma Zeigarnik, a Lithuanian-Soviet psychologist, who was working at her lab and took a break by going to a near-by diner. She observed waitresses remembering all of the particulars of an order, from the beginning moments of learning from the customer until placed in the kitchen and then delivered to the customer at the table. Once delivered, the information no longer needed to be stored and was dumped. With diagnosis steadily on the rise, even when adjusting for population growth, dementia is screaming into the void what we so far have been ignoring. Perhaps the message is: “Hear my grief.” One of the ways to hear people’s grief is by acknowledging the real effects of a history of trauma. Additionally, it’s important to recognize the impacts trauma and grief, and particularly unacknowledging these events, have on informing and constricting identity development and decisionmaking processes. Maintaining agency and identity are critical to overall health and wellbeing.

 ighlighting Agency and Identity: Multimorbidity, H Symptomatology, and Resilience Authenticity refers to a way of reaching decisions which are truly our own decisions that express all that we believe to be important about ourselves and the world. This includes the entire complexity of our values as well as our identities (Gadow, 1980; Winnicott, 1960). Developing, implementing, and promoting therapeutic practices that embody and promulgate agency is needed now more than ever. Far too often is the scenario that people living with dementia are infantilized – car keys taken away, decisions are made about clothing and food is cut up. Although these measures hide behind the guises of safety and caring, there are forms of communication that more effectively convey care and also allow people to make their own decisions, thereby keeping intact agency (Higgs & Gilleard, 2016; Zeiler, 2014). This is a topic that will be returned to in Chap. 6. When people use language that is commensurate with a person’s capabilities, this informs a participant’s identity. When people use a tone that conveys a lack of intelligence on the hearer’s part, a participant may also incorporate this into their own development of their identity. Sometimes, what very well could be a person’s strengths are seen as liabilities. One of the main reasons for stressing an incorporation of identity and agency into the proposed therapeutic model is a recognition of the injustices committed when we insist on descriptive singularity informing ways of interacting. When a person is diagnosed with severe dementia, we may hold a set of assumptions in our mind of how and in what ways a person will respond or is able to interact. It is imperative to the wellbeing and thriving of all citizens to view a person living with dementia symptoms as a person first. As Nussbaum eloquently articulates, “To rob aging people of agency and choice in the way one describes them is to dehumanize and objectify in a particularly insulting manner” (2017). The story of “old people”

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is singular and simple. The story of old people carrying a diagnosis of severe dementia is a fraction of the singularity of the old person narrative, possessing potentially twice as much harm. Let’s make a commitment to begin with names. Rather than furthering the common destructive, diminishing, and potentially retraumatizing narrative of BPSD a few researchers have flipped it on its head, arguing that these are expressions of agency (Boyle, 2014; Orulv, 2012; Finkel, 2000; Kales et al., 2015). Regulation of BPSD needs to be relegated to the background, reframed as a form of agency, and therapeutic techniques aimed at increasing flourishing brought into the foreground (Ryan et al., 2013). It is sometimes remarked that one challenge with developing a coherent and systematic therapeutic approach for people living with dementia is determining individual needs (Smith et al., 2013). A view of BPSD, expanding on the notion of exercising one’s agency, is the human need for an attachment figure (Walsh et al., 2019). It has long been established that complicated grief leads to negative overall health and life quality consequences (Prigerson et  al., 2008). Grounded in attachment theory, Complicated Grief Treatment (CGT), one of the only evidence-based techniques that has been applied to older adults, holds promise for bridging attachment gaps among people living with dementia (Meichsner, et al., 2020; Shear et al., 2014). We will expand on the role of attachments in Chap. 6, by exploring four layers (aging, trauma, dementia, and death) and how these shape the mind-body landscape. In this chapter, as well as Chaps. 3 and 4, we will garner the necessary attachment knowledge, that will complement your existing knowledge, so that when we arrive in Chap. 6, we will be ready to apply this knowledge to a proposed therapeutic approach. Investigations of complicated grief in the context of dementia rarely, if ever, concern the person diagnosed with dementia and instead focus on the needs of caregivers. Diagnosis dictates a rapid transitional process from my grief (person with dementia), to our grief (person and caregiver), with most of the focus on your grief (caregiver). Where did my grief go? Recognition of a person’s grief is either very brief or nonexistent. As a connected global community, we can promote the greatest form of social justice by searching beyond the symptomatology of dementia, recognize the person as a capable person, and see BPSD as a struggle for recognition. When we fail to accept BPSD as a struggle for recognition, we dismiss the possibility and potentiality of underlying grief processes. We also reduce a person to a one-­ dimensional object, shaped by, understood and informed by diagnostic criterion. The uniqueness of the person is lost. All the more reason to commit to beginning with a name. It is possible that what is diagnosed as multimorbidity of dementia may in fact be complicated or prolonged grief staring us in the face. For decades now, we have turned our backs on the possible efficaciousness of a therapeutic approach based in grief treatments for addressing what is often cited as the most troubling sequelae of dementia – BPSD. As we previously considered, it is a very real possibility that BPSD is not shaping a person’s response to a diagnosis of dementia, yet are products of the treatment of such diagnosis. When we explain symptoms of distress as something that needs to be managed, we are short-changing the lived experience, the personhood and authenticity of the person being managed. An example of this can be illustrated with a vignette.

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2  Social Justice Sidney and I were at his home and were standing near the door preparing to leave the house. Just before his wife walked into the room he commented to me, “Gosh, everyone has an idea of what I should be doing. Thanks for not talking to me like I’m dumb.” His wife then remarked in a slow and high-pitched tone, “Honey, you need to put your shoes on if you’re going to go outside and get in her car.” He looked at me and said, “See, everyone wants to be a supervisor. No one wants to be on the assembly line. Put ‘em on. Take ‘em off. Put ‘em on. I wish I could do one damn thing right.”

For far too long, it seems we have blatantly been disregarding the underlying grief processes of people diagnosed with dementia. Let’s take a deeper look at the overlapping nature of complicated grief and dementia. In this section, we will draw from conversations in the bereavement literature which has “take[n] steps to operationalize grieving, develop instruments to assess it and not rely so heavily on assessment of symptoms exclusively” (Rando, 2000). Moreover, dementia is far more complex than the one-dimensional view of measuring and managing BPSD. The experience of dementia is also about coping and adapting to loss, to massive change and registering one’s responses to these changes – resilience predicated by recognition. To this end, I will focus on drawing three parallels between complicated grief and dementia: multimorbidity, symptomatology, and resilience. Due to the brevity of this section solely, and by no means a maneuver intended to undermine its importance, the concept of recognition (which defines resilience) will only be given a nod. We will see repeated returns to a discussion of recognition, personhood, and dignity throughout this book.

Multimorbidity Prevalence of multimorbidity is much higher among people diagnosed with dementia. Beyond navigating a healthcare system that has historically been designed to treat single case scenarios of disease and disorder, exploration of multimorbidity from a strengths-perspective holds promise. For example, knowing that “in contrast to the general population, systolic blood pressure has been observed to start falling up to 6 years before the development of clinically apparent dementia,” can be the first step in offering grief-based therapies to safely address unresolved grief episodes, theoretically resulting in a diminished declining of attention, memory, language, or, executive functioning (Harrison et al., 2016). Multimorbidity awareness benefits to the greatest degree when a system’s approach to wellbeing is embraced.

Symptomatology Although symptomatology can offer valuable insight leading to diagnosis – providing a name for a disorder and access to useful treatment methods – it should never replace a person’s name. Further, if grief assessment measures are included in a

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comprehensive dementia health social service, it is important to consider how objective evidence of the presence of complicated grief can be illuminating and simultaneously constricting. BPSD is widely accepted as emotional, perceptual, and behavioral disturbances that are likened to psychiatric disorders. Some researchers have put forth the clinical utility of classify[ing] them into five domains: cognitive/ perceptual (delusions, hallucinations), motor (e.g., pacing, wandering, repetitive movements, physical aggression), verbal (e.g., yelling, calling out, repetitive speech, verbal aggression), emotional (e.g., euphoria, depression, apathy, anxiety, irritability), and vegetative (disturbances in sleep and appetite) (Cloak & Al Khalili, 2020). Perhaps these are five ways people struggle for recognition to process their grief. We can see a similar observation being made in research on schizophrenia symptoms. For example, schizophrenia symptoms are largely symptoms of grief that surface when a person realizes and experiences a major shift in their perspective and narrative (Appelo et al., 1993). In part, this narrative is informed by what it means to live with a life-long illness. For some people living with dementia symptoms, their diagnosis very well could be the result of grief symptoms. Perhaps we can adopt a complicated grief lens to understanding BPSD and begin the process of reconceptualizing the meaning of BPSD. Some have argued that BPSD is a form of agency and as such should be treated as a means of expression. It is not surprising that in a meta-analysis of 10 studies on nonpharmacological approaches to reducing PBSD that only music therapy and massage for minimizing depressive symptoms yielded positive results (Na et  al., 2019). By ignoring the presence of underlying complicated grief, we are taking a band-aide approach to wellbeing. Furthermore, cognitive and behavioral symptoms of dementia may be falsely represented by depression, nutritional deficiencies, side-effects from medications, and emotional distress, among many other possible reasons.

Resilience Resilience is a trademark consistently expressed by far greater people experiencing loss than is often expected. It has been suggested in numerous bereavement studies that people who are considered resilient lack a history of mental health challenges (Bonanno, 2004). There is evidence that people who are labeled resilient, present as more comfortable talking about their dead spouse than other study participants (O’Connnor et al., 2002). Does this also apply to the dead spouse within? Other study findings suggest that individuals in the resilient group abstained from ruminative thought engagement with the loss (Wortman & Boerner, 2011a, b). As has been highlighted elsewhere, changed brain structures and rumination might also be a form of resilience. Rumination could be a form of love. In what ways could people’s experience with dementia shift if they have access to grief-based therapies, where their losses can be acknowledged, validated, and integrated? It has been proposed that one measure of support comes in the combinatory form of grief-informed motivational interviewing to strengthen coping and communication capabilities (Shear

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et al., 2007). Shear and colleagues offer a therapeutic framework that holds promise for shifting how dementia is experienced. They suggest that “reviewing of the bonds of the bereaved person to the lost person, and the capacity to review memories and deal with dependent and ambivalent aspects of the relationship with the deceased, may be part of therapeutic exposure or confrontation processes” (2007). The innovation in applying this to the lived experience of dementia is that the bonds with the bereaved person exists within the person living with dementia. They are looking to reconcile different versions of themselves (Harré, 1998). The versions of the self are informed, shaped, and constrained by society and interactions with others. It can be assumed, following the above line of reasoning, that if resilient people are presented with opportunities to integrate their former, present, and future selves then BPSD will fade. Some have suggested that when people experience severe dementia symptoms then they are unable to grieve (Cooper, 2013). And yet researchers simultaneously argue that to love suggests a capacity to be vulnerable to grieving. Would Cooper extend her argument to suggest that people affected by severe dementia are prevented from loving? Much less prevalent in dementia literature are discussions of pleasure, joy, exhilaration, and dreams. These are necessary and significant components of humanity and add to our ability to be resilient. As dementia activist and author Kate Swaffer stated, “Dementia is full of paradoxes” (Sehgal, 2020). In other words, experiences with dementia move along a continuum from grief to giving and everywhere in between. Part of the process of experiencing pleasure is the act of giving. Giving of ourselves. In what ways do people, either living in the community or in an institutionalized setting encounter opportunities where genuine giving can transpire? Holding a door, allowing a person to go ahead in the grocery line, or complimenting someone’s smile. It has only been recently that we have considered the capacity for people living with dementia symptoms to have feelings about feelings  – insight. Investigations of BPSD are largely absent the voices of people exhibiting them, rather the booming voice is coming from an observed other who is considered to be an authoritative source on another’s lived experience. We must first begin from a place of recognition. Recognition of the person as a person. Helm argues that there is a rational connection between emotional states and grief that cascades from loving (2001). Frances suggests that “grief must be a side-effect of our evolved ability to form attachments” (2010). Living with dementia does not prevent this capability. If we are to ever live in a just society, one that recognizes the value of people living with dementia symptoms, then we need to begin by reconceptualizing BPSD. One route to reconceptualization is to begin to acknowledge the roles unmetabolized loss may play in the outward presentation of BPSD. I have highlighted three ways agency and identity can be strengthened by considering: multimorbidity, symptomatology, and resilience. An integrative, rights-based, trauma-informed conceptualization of dementia health is one way for communities to ensure the social justice needs of all members are met, respected and protected. This framing might be considered to be a more just way of including members of our community

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who are also living with dementia. By making this shift, we might witness the flourishing of people who for far too long have been objectified, reduced to their diagnosis and classified as a liability to themselves and a burden to society.

Dimensions of Social Justice Model in Dementia Health Although the Dimensions of Social Justice Model was developed with intentions on guiding group work, there is direct applicability to micro level work being done within the field of dementia health (Ratts et al., 2010). One example of micro level work is the individual change process (internal systemic change). As we will see in Chap. 6, one potential outcome of DGT is because of an individual living a meaningful life, they may have influence on other systemic change (external systemic change  – government policies or other social changes). The social justice model outlines five dimensions: naiveté, multicultural integration, liberatory critical consciousness, empowerment, and social justice advocacy (Ratts et al., 2010). In some respects, these dimensions partially influenced the development of Dementia Grief Therapy. We will expand on this in Chap. 6 when we discuss the particulars of DGT, for now though, we will consider how two dimensions can strengthen the field of dementia health: liberatory critical consciousness and empowerment.

Liberatory Critical Consciousness The antithesis of oppression is liberatory critical consciousness which suggests an embracing of ideas and emphasizes valuing the contributions of all members of a society. The process of objectification, a form of interpersonal oppression, happens all too often in the presence of people living with dementia symptoms. We can turn to a vignette where Fred’s experience living in a long-term care community (LTCC) exemplifies the dimension of liberatory critical consciousness in action. Fred relies on a wheelchair for increased mobility. Svetlana, a certified nursing assistant who works where he lives (a LTCC), arrived at Fred’s apartment and pushes him in the wheelchair to an exercise class down the hall, engages in conversation along the way with other employees and when arriving at the group exercise room says to another employee, “I’ll just put him here,” and then walks away.

The personhood of Fred is diminished. In this situation, embracing liberatory critical consciousness suggests an asking of Fred, “Where would you like to sit?” In this scenario, the process of affirming human agency and human capacity was extended to Svetlana and her colleagues and denied to Fred. As a result, there was a missed opportunity for collaboration where all people are valued and respected.

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Empowerment It is a very real possibility for LTCC communities, senior living communities, and cities to exist for the purpose of promoting human flourishing rather than for the purpose of completion of basic and instrumental activities of daily living (ADL). Even in individual instances where support is needed from another person to move, bathe or dress, this need not be the main focus of interaction. Rather, it is an opportunity for empowerment. Take for example the previous noted scenario in the above section. If Fred becomes aware that his body placement is the result of an underfunded and underemployed system then the potential internalizing, detrimental effects of this action may be lessened. Further, Fred may be motivated to take action steps to change internal policies that reflect an atmosphere of self-advocacy. Just as Fred may be empowered to make a shift that makes a difference, there too are opportunities for people to make shifts in their day-to-day life that severely alter the outcome of later life. It is my hope that by this point in our journey, you recognize our health, wellbeing and potential life trajectories are in our hands and you also feel empowered to do something in the moments where you recognize systemic imbalance exists. I do. At the same time, it is important to acknowledge societal structures that make access to resources inaccessible for some. The concept of developing a minimum threshold of human flourishing and justice, borrowing from the capabilities approach, highlights the importance of opportunities for people to develop their emotions (Nussbaum, 2002). One method for developing emotions is by having access to grief-informed therapies. In determining this threshold, Nussbaum suggests that the goal may sometimes be adequacy and other times equality, yet always shall be culturally situated. In other words, the shape of flourishing is informed by social and cultural norms. In the cases of grief and dementia, we can turn to WHO and International Classification of Diseases (ICD), “international standard for reporting diseases and health conditions” for unilateral agreement of diagnostic norms (2019). As we will see it is necessary to adopt a trauma-informed perspective where it can be assumed a person navigating living with dementia symptoms has also experienced trauma. We will discuss trauma and a trauma-informed approach in this chapter. For now, we can focus on feeling empowered to use the tools inside of our body to make an impact on later life dementia development. In the next section we will understand the literature on modifiable risk factors from a broad perspective.

Modifiable Risk Factors The prevalence of dementia risk and protective factors continue to evolve. The first comprehensive analysis forecasts dementia prevalence in 204 countries and territories and examines the impact of expected trends in exposure to four important risk factors – smoking, obesity, high blood sugar, and low education (GBD, 2022). The

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numbers of people living with dementia symptoms is expected to increase, predominately due to population growth and population aging. Across the globe, projected rates of increase are by no means equal, ranging from 53% to 367% (GBD, 2022). In fact, the greatest growth in cases is expected to originate in North Africa and the Middle East at a rate of 367% (GBD, 2022). At the same time experts anticipate that with improved access to education, there could be 6 million less people living with dementia symptoms, by 2050. It is important to note that projected rates of obesity, high blood sugar, and smoking are estimated to contribute to an additional 7 million dementia cases. Other researchers have used data from the Global Burden of Disease Study of 2019 to investigate risk factors for Chinese women. Meng and colleagues highlighted that high body mass index had the greatest effect at 8% of dementia development, while smoking produced the smallest effect at 6% (2023). Increases of dementia rates are greatest in low and middle income countries with limited access to the fewest amount of resources. Now, even though in the United States, we see higher numbers of people who are African Americans or Hispanics living with dementia symptoms, genetic factors do not appear to account for the greater prevalence of – or the greater risk for developing – AD (Barnes & Bennett, 2014). Nonetheless, some studies (the ADAMS study Age Demographics Memory Study) suggest African Americans are twice as likely to receive an AD diagnosis (Walsh et al., 2022). African Americans and Hispanics are typically diagnosed in the later stages of the disease, when physical and cognitive impairment is higher – and therefore in need of more medical care (Kornblith et al., 2022; Weuve et al., 2018; Chin et al., 2011). This is an access issue that highlights the inequalities in the current social and health infrastructure. The previous common narrative – dementia is inherited and if we have a family history of others with dementia symptoms, then we can expect this too will be our future – is increasingly being replaced with a more hopeful narrative. The prevailing narrative is there are certain lifestyle practices, or risk factors, that decrease or increase our chances of developing a disease and experiencing dementia symptoms (Christopher, 2023; Dominguez et al., 2021). It is no longer believed to be an absolute guarantee that if a family member of a previous generation “lost their mind” then we will too. In fact, inheritable Alzheimer’s is quite rare, somewhere between 2% and 5% of all cases (Ridge et al., 2013; Pedersen et al., 2004; Lautenschlager et al., 1999). The Alzheimer’s Society in the UK indicates that heritable cases of Alzheimer’s are even less than 1% (2023). If genes are not the main way people develop dementia symptoms, then we can consider the role of other contributing factors – environment and lifestyle. A team of researchers just added three more modifiable risk factors to dementia development – excessive alcohol consumption, traumatic brain injury, and air pollution – to the preexisting known nine: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact (Livingston et al., 2020; Anstey et al., 2013). From a social justice perspective, knowledge of the modifiable lifestyle factors and access to health promotion services is necessary for initiating change. This is one reason why the WHO’s

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Global Action Plan on Dementia (GAP) states as the first action step for countries to make dementia a public health priority. The Lancet Commission released a report in 2019, a continuation of work started in 2017, that indicated that of all dementia cases 35% were considered modifiable. These findings were placed within a lifespan model to suggest that at midlife, there are three areas of concern: hearing loss, hypertension, and obesity. Of all dementia cases, these factors correspond with 9%, 2%, and 1% of cases, respectively. In late life, the report suggests smoking, depression, physical inactivity, low social contact, and diabetes, from 5% to 1% of all cases attributable to these causes, respectively. These data were later updated using different projection models to suggest 40% of cases are modifiable (Livingston et al., 2020). To put this differently, total global dementia cases could be reduced by 1/3 if access to health promotion increase and people are motivated to alter lifestyles (WHO, 2019). One aim of GAP is to identify dementia risk reductions by 2025. One interesting finding from a recent national survey of 2361 adults, ages 15 years and older, in the UK, is that only 34% believed the risk of dementia could be reduced through lifestyle changes (Bosco et al., 2020). Let’s take a moment and look at some research efforts on encouraging the public to modify lifestyle factors. In Chap. 4, we will return to a discussion of efforts on modifying lifestyles when we take a closer look at what is being done in three countries: Japan, India, and the United States. Cay Anderson-Hanley and her colleagues at Union College are engaged in some interesting research on simultaneous exercise and cognitive interventions with people with Mild Cognitive Impairment (2018). As we know from research, some suggest MCI is thought to be a precursor of more severe dementias. In the United States, it is estimated that 10–20% of people with MCI will be diagnosed with dementia within 1 year (NIA, 2021). Other researchers are looking at physical activity’s effect on cognitive functioning (Mandolesi et  al., 2018; Gomez-Pinilla & Hillman, 2013). Nicole Lautenschlager looked at dual task activities (aerobic activity and strength training) and how the “right” physical activity may delay progression of further cognitive impairment (Lautenschlager et al., 2010; Lautenschlager et al., 2008). Other researchers point to the protective effects of exercise on the brain and body, suggesting physical activity may halt MCI conversion into dementia development (Demurtas et al., 2020; Morgan, et al., 2018). Investigating the intricacies of modifiable factors is an ongoing and developing area within dementia health. We have a social justice obligation to not only create equal access to health promotion services, we also must address systemic injustices and biases, all of which have been identified as key agents in reducing global prevalence rates of dementia (WHO, 2017). For example, some researchers suggest transgender and nonbinary people report increased cognitive decline and have a greater susceptibility to develop AD (Brady et al., 2023, Baril & Silverman, 2022, and Scharaga et al., 2020). In one study, nonbinary adults experienced kidney problems at a rate of 8% compared to cisgender men at less than 1% and cisgender women at slightly higher than 1%. There is a relationship between kidney functioning and dementia, where there is a moderately increased rate of dementia for people with kidney disease (Brady et al., 2023). These data were extracted from the Behavioral Risk Factor Surveillance Survey (BRFSS), which is a national health survey of U.S. adults conducted by the

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Centers for Disease Control and Prevention (2019). In part, this increased risk of later life dementia development may be due to systemic discrimination, diminished healthcare access, stigmatization, or other reasons (Fredriksen-Goldsen et  al., 2013). When modifiable risk factors disproportionately affect one group at a greater rate than another, this is an indication that socially and systemically we can do better. The Alzheimer Society of Canada produced an information sheet that suggests about ½ of cases are the result of modifiable factors (2018). Some modifiable factors are changeable at the individual level (micro), some are structural or systemic (meso and macro), and some are a combination of both. For example, low levels of testosterone are associated with cognitive changes and AD.  Even when we have long known the neuroprotective capacity of testosterone and its role in memory and learning, we have opted to not have this be a regular screening tool or part of the Medicare Annual Wellness Visit (AWV; McAllister et al., 2010). The U.S. healthcare system is designed to not regularly check testosterone levels in female patients. Therefore, the onus of having levels checked is on the individual to advocate for herself. It should be noted, this is often not covered by insurance and many home testing kits require you to be male in order to have test results processed in the lab. To date, all research efforts investigating the role of low testosterone levels is focused on men’s health (Ford et al., 2018; Wang et al., 2019 and Yeap & Flicker, 2022). To grasp a fuller representation of what is going on with sex hormones and differential dementia diagnosis, it seems plausible to include women as subjects in studies investigating a potential causal relationship between levels of testosterone and dementia development. Another component in identifying modifiable risk factors, is the process of recognizing the malleability of genes (epigenetics), of the brain (cognitive reserve) and how when the brain is damaged, new neural pathways can be developed for information to travel in different directions (neuroplasticity). In addition, we continue to expand our knowledge of the protective, healing and resilient capacities of the body. Lungs that once smoked can heal. Kidneys once damaged can learn to refilter. If we come from the perspective that the human body wants to live in a state of health and equilibrium, then we can appreciate the relational capacity among various parts of the body (Rubin, 1999; van der Kolk et al., 1996). We will return to a discussion of the body wanting to be in a state of health in a future section when we discuss a trauma-informed approach to dementia health. For now, with a broad overview of the role modifiable risk factors play in dementia development, let’s understand the interrelatedness of the body when living with dementia.

Dementia: The Body and the Brain Whole body health and wellbeing is interdependent. The health of the lungs does not only hold intrinsic value, they too have instrumental value. The process of optimizing oxygenated blood circulating in the body is highly dependent upon the health of the lungs. For example, cardiac function and viability is a result of the

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quality and quantity of oxygen received in the chambers of the heart. This blood is then circulating to the brain and the body. It has been suggested that the brain relies on 15–20% of cardiac output to function properly (Xing et  al., 2017). In other words, the health of the brain is not self-contained within the mechanisms of the brain. We need to continue to look at the relationships throughout the body. What happens when there is internal disequilibrium? Let’s take a moment and look at how dementia interfaces with the brain and the body. We will return to this discussion in Chap. 6 when we layout attachment dimensions within and among bodily layers – aging, grief and trauma, dementia, and death. We will look at four areas: lungs, kidneys, liver, and brain. When living with dementia symptoms, there are changes in the lungs, such as a shortness of breath, sleep apnea, and a tendency to rely on thoracic and clavicular breathing for respiratory needs. Breath originating in these two chambers diminishes the quality and quantity of oxygenated blood flow to other critical areas of the body. Further, in the absence of abdominal breathing, the body remains in a stress-induced state with neuroinflammation accumulating. As for the kidneys, we know one role is in regulating the hypothalamus, by way of dopamine in the pituitary gland, sometimes referenced as the kidney-brain-axis theory (Kelly & Rothwell, 2022). It is important to note that the association between kidney health and dementia development is varied, although as we previously discussed there is research suggesting a relationship between kidney function and dementia development (Zhang et al., 2023; Pichet Binette et al., 2023; Stocker et al., 2023; Xu et al., 2021). Last, we can investigate the relationship between dementia and a third area in the body: the liver. Although substantially more studies need to be conducted, preliminarily, it is suggested that there are increased enzyme levels in the liver of people ages 60 and greater who also exhibit impaired cognitive functioning (Wu et al., 2022). Adopting a whole systems approach to reducing the numbers of people experiencing dementia symptoms is reflective of the ways in which dementia interacts with multiple internal systems. We’ll see a return to a discussion of the brain and the body, using three areas of inquiry (lungs, liver, and kidneys) when we discuss trauma in the next section. We will also discuss at much greater lengths current research efforts on traumatic brain injuries as an identified modifiable risk factor in future sections and in Chap. 10. In part, we will discuss research findings on TBIs as a model for why grief (traumatic emotional injury or traumatic bodily injury), perhaps an emotional equivalent of a traumatic brain injury, needs to be further investigated. All of this is to highlight the importance of adopting a multipronged or integrative approach to dementia health. Rather than privileging one area of the mind or body, or using targeted therapies, we must think in systemic contexts. Now, let’s turn our attention to defining trauma, understanding the prevalence and why a recognition of a history of trauma is important in any just society.

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Trauma The DSM-5 defines trauma in four different ways: (1) direct personal exposure (threatened death, sexual violence, or serious injury); (2) indirect by witnessing trauma inflicted on another; (3) indirect exposure through trauma experiences of someone close; and (4) repeated exposure to traumatic events due to occupation (crime scene surveyors, investigators of child abuse, emergency responders, etc.) (American Psychiatric Association, 2013). Or, we could turn toward the definition of trauma offered by Substance Abuse and Mental Health Services Administration (SAMHSA), who in 2012 reported in their Trauma and Justice Strategic Initiative, “Trauma results from an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or threatening and that has lasting adverse effects on the individual’s functioning and physical, social, emotional, or spiritual well-being (Substance Abuse and Mental Health Services Administration, 2012).” One commonality between these two definitions is combined event and effect. There has yet to be one single event that has a consistent effect on all people everywhere. We had an opportunity to test this in a real-­world environment. In March 2020, COVID-19 affected all people everywhere and yet, the lived experiences are both similar and divergent. To tease out the particulars of trauma, we can focus on three areas: event, experience, and effect and use dementia (major neurocognitive disorder) diagnosis to more fully understand these three areas. The event of dementia diagnosis is personal and public. Initially, upon hearing a diagnosis, potentially comes a lifetime of conceptual understandings of what it means to now be living with dementia. Ellen Langer, distinguished scientist, reminds us that we create conceptual models before it applies to us (whatever it is – death, dementia, aging). Then, when receiving this diagnosis, we potentially fulfill these conceptualizations. Not only do we have our own, there is also the interaction of our own models with others who may be with us at a time of diagnosis. A range of emotions and physiological responses may ensue. We may be feeling shock, disappointment, anger, loss or anything else. If we have not previously trained to separate ourselves from our emotions, then we become our emotions. We feel anger and our blood pressure increases. Blood flow moves away from the gut and toward muscles in preparation for anticipated physical exertion. Adrenal glands flood the system with adrenaline and cortisol. Prolonged anger or unacknowledged anger may present as a diagnosis of hypertension. Similarly, grief and trauma have parallel effects on the body, in particular the hypothalamus-­pituitary-adrenal axis or HPA axis. The HPA axis is a critical network that modulates cognitive, immune, and behavioral responses to stress (Lupien et  al., 2009). Some people diagnosed with dementia are traumatized by the very process of diagnosis. This is their worse fear or nightmare come true. For others, the diagnostic process is more procedural and completed for other’s sake. Others have 1001 different ways a diagnosis unfolds. The experience of diagnosis, followed by living with dementia symptoms may be a cascading of one traumatic moment gushing into the next. For others, the

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experience is serene. Others experience dementia as freeing. Floyd Skloot, a writer based in Portland, Oregon has been living with dementia symptoms for years. He commented recently, “I have been rewoven. Love and passion entered my life for the first time in decades.” Or, in the words of an activist Kate Swaffer, “I know so much more than I did before.” For neither of these people, nor others like them, is the experience of living with dementia traumatizing. And yet, for plenty more of the global population, the fear of living with dementia symptoms is very real. According to a report by Alzheimer’s Disease International, 78% of the global population expresses fear with later life dementia development (2019). Much of this fear is fueled by misinformation, stigmatization, and stereotypes. Last, we have the effect of dementia diagnosis and largely this is dependent upon factors that were in place prior to diagnosis, as well as support structures following diagnosis. As we learned in the vignettes of Parvati and Marcus, the event of diagnosis can unfold into very different lived effects and experiences. Let’s explore a bit of the prevalence of trauma. We will now broaden our understanding of the prevalence of trauma, current legislation in the U.S. aimed at protecting trauma survivors, and understand the origins of trauma theory.

Prevalence Prevalence of exposure to traumatic events might be more widespread than some think. Results from a global study conducted by an international team of researchers, led by Corina Benjet from the Instituto Nacional de Psiquiatría Ramón de la Fuente in Mexico City, Mexico, is quite revealing. The team gathered data from population surveys completed by 68,894 adults, spanning 24 countries of origin, across six continents, with a total of 29 separate traumatic events being identified. Of these identified traumatic events, 70% of respondents reported exposure to at least one traumatic event, while exposure to four or more traumatic events was experienced by 30.5% of respondents (Benjet et al., 2016). Benjet and colleagues offered a five-area categorization of exposure types: witnessing death or serious injury, unexpected death of a loved one, being mugged, being in a life-threatening automobile accident, and experiencing a life-threatening illness or injury. Other researchers suggest adults in economically developed countries experience a traumatic event at a rate of 28–90% (Koenen et al., 2017). It is safe to assume that most people everywhere who are age 65 and greater have experienced trauma in their lifetime. We have a social justice obligation to consider these previous life experiences when developing and delivering dementia therapies and interventions. To ignore these histories paves the way for potential retraumatization. Therefore, it is important for social infrastructures to operate from a trauma-informed perspective. In fact, the U.S. has developed federal guidelines that aim to protect trauma survivors who live in state endorsed residential spaces, such as group homes, LTCC, and senior communities.

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Current Legislation Unbeknownst to many, there are federal guidelines in the United States, that codify the significance of protecting trauma survivors. Title 42 lays out specific guidelines for public health and social welfare. According to Title 42, Chapter IV, Subchapter G, Part 483, Subpart B, § 483.25, which focuses on quality of care, there is a requirement for States and LTCC to ensure all care is trauma-informed. In other words, it has been specifically stipulated that “the facility must ensure that residents who are trauma survivors receive culturally-competent, trauma-informed care in accordance with professional standards of practice and accounting for residents’ experiences and preferences in order to eliminate or mitigate triggers that may cause re-­ traumatization of the resident” (2023). Title 42 was last amended October 10, 2023. What about for people not living in age segregated communities? For people living at home, their history of trauma can be recognized and folded into routine health practices. Within the community, trauma histories can easily be assessed by people interfacing with the healthcare system. For example, one of the purposes of Medicare’s AWV is to develop a personalized prevention care plan. This necessitates an infrastructure that offers adequate support when trauma survivors are identified. For people moving into LTCC (including memory care) or Veteran Health Affairs (VHA) community, there is an admissions process that includes a comprehensive assessment. This requirement is stipulated at the federal level within the United States. During this process, one component could be inclusion of a questionnaire that gathers data on trauma history, thereby ensuring that once admitted practices of care are not retraumatizing (O’Malley et al., 2023; Li et al., 2019). One example of a questionnaire on trauma history is the Adverse Childhood Experiences (ACE). For community dwelling older adults this could be included in Medicare’s AWV or those living in other residential community settings (as previously mentioned) gathering an ACE score as part of the intake process. In the next section, we will explore the significance of ACE scores in the context of dementia health.

History of Trauma Theory Let’s situate our exploration of ACE development and administration within the context of trauma theory and recognition. Trauma is believed to have first been studied by Jean-Martin Charcot, in the 1870s, at L’Hôpital Salpêtrière, in Paris (Waraich & Shah, 2018). Charcot, despite critique from colleagues in the fields of medicine, neurology, and psychology, he studied hysteria in men as well as woman. He believed that hysteria was an attempt in the mind to create homeostasis when trauma occurred. Trauma disrupts the nervous system and the body manifests neurological symptoms (Thorburn, 1967). Hysteria is one example of a neurological disorder (Veith, 1965). Charcot continued to develop his therapeutic technique,

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incorporating hypnosis. Much of the symptoms Charcot described in patients at Salpêtrière, in the 1870s fit current understandings of PTSD: fatigue, nervousness, fearfulness, heart palpitations, insomnia, and nightmares. Three of Charcot’s students were motivated to discover a cure for hysteria: Sigmund Freud, William James, and Pierre Janet. Freud would go on to develop the concepts of preconscious and subconscious (Gasser, 1994) and the role of repression in traumatic events (Laplanche & Pontalis, 1967). Freud partnered with a physician Josef Breuer, to expand and present case studies of their patients presenting hysteria and published their therapeutic findings and theoretical conclusions in a book: Studies in Hysteria (1895). Their work revolutionized the way trauma is understood – the power of the body to create memory. They state: “psychical trauma – or more precisely the memory of the trauma – acts like a foreign body which long after its entry must continue to be regarded as an agent that is still at work”. In this historical text laying out psychotherapy, there is also a common strand of love. We will see a return to this love dimension in future chapters. As important as the work on trauma that many generations before have done, it was not until 1980, that Post-Traumatic Stress Disorder (PTSD) was introduced by the American Psychiatric Association, in the DSM-III (1980). It would then be another decade before trauma appeared in the International Classification of Diseases (ICD) as “enduring personality change after catastrophic experience” (1992). Outside of the clinical specifications of trauma, we can consider traumatic experiences and the continued effects of these events. One way of understanding the significance of acknowledging a history of trauma in dementia health is to understand the background on the development of the ACE questionnaire and what was attempting to be measured.

 uestionnaire Development: Adverse Childhood Q Experiences (ACE) In 1994, Vincint J. Felitti was in the Department of Preventative Medicine with the CDC and was asked to investigate what’s going on with the health and history of insured adults (Center for Disease Control and Prevention About the CDC-Kaiser ACE Study, 2021). ACE is a questionnaire developed in partnership between Centers for Disease Control and Kaiser Health in California. A total of 13,494 adults were contacted and 9508 completed the ACE questionnaire, or 70.5% (Felitti et al., 1998). Felitti and his colleague developed a 10-item scale for the purpose of investigating the relationship between childhood maltreatment and adverse rearing practices (five questions in each area) and adult health outcomes. There were seven categories of adverse childhood experiences that were studied: psychological, physical, or sexual abuse; violence against mother; or living with household members who were substance abusers, mentally ill or suicidal, or ever imprisoned. The researchers determined there was an association between childhood exposure to

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trauma and later life health comorbidities or death. Study findings suggest diseases such as: “ischemic heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease” correlated directly with childhood trauma (Felitti et al., 1998). Some study respondents were at a 4–12 times increased risk of diminished health. In particular, those who experienced four or more categories of trauma were at an astonishingly high rate of health disparity, compared to their no ACE score counterparts. The original ACE-Q has since been adapted and modified and expanded to include other areas. For example, in the expanded version, other areas of potential trauma exposure are measured: bullying, community violence, neighborhood safety, racism, and living in foster care. Then, in 2015, Peter Cronholm, with the Department of Family Medicine and Community Health, at the University of Pennsylvania recognized the heterogeneity of the original study respondents (predominately white and middle and upper class) and wondered if similar questions were asked in a different population (one that is socioeconomically and racially diverse), would the results be similar. He conducted a study where of the 1784 respondents, nearly three-quarters experienced at least one conventional ACE, and nearly half of respondents experienced both conventional and expanded ACE. Of the respondents who experienced expanded ACE, they totaled 63.4% of respondents. The biggest take away is that if only conventional in-home ACE were accessed, 13.9% of respondents would have slipped through the cracks and not been recognized as having been exposed to trauma (Cronholm et al., 2015). Study after study has replicated findings that ACEs correspond to increased later life disease and death (Felitti 2019). As it pertains to this book, a fascinating area of inquiry is understanding the importance of knowing the trauma history of people pre and post diagnosis. In other words, the benefits of understanding trauma history are two-fold. First, when we know the trauma history of people living with dementia symptoms then we can ensure day-to-day encounters and health practices are not retraumatizing (Russell, 2013). Second, if indeed childhood trauma experiences impact later life dementia development than this needs to be added to the list of modifiable factors. Let’s deepen our discussion to understand why dementia health desperately needs to include trauma history.

Importance of Trauma History to Dementia Health The link between trauma history and dementia development is not a recent discovery, although trauma is currently not included as a modifiable risk factor for later life dementia development (Stern & Hulko, 2016; Burri et  al., 2013). In a meta-­ analysis, researchers used data from 276,570 participants and determined that exposure to a traumatic life event increased the rate of developing dementia (Severs et al., 2023). As has been noted elsewhere, one of the concluding remarks by these researchers is understanding the association between trauma and dementia, and not only overall exposure, yet also understanding individual factors of experience and

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effect. It is a grave injustice to humanity to keep hidden the effects of childhood abuse and trauma on later life adult health outcomes. Several years ago, there was a study out of Japan looking at the relationship between ACE scores and later life dementia development. Researchers recruited 17,412 older Japanese adults and focused on three areas of trauma (interpersonal loss, family psychopathology, and abuse and neglect), by asking seven questions. Although study results suggest the cumulative number of adverse childhood experiences is associated with an increased risk of developing dementia, a finding most striking is that 10,968 respondents had a score of zero (Tani et al., 2020). This begs me to wonder about the cultural appropriateness and translation of the questions. Were the questions being asked reflective of measuring trauma exposure in this population? Independent of this question, study respondents with ACE scores were nearly twice as likely to develop dementia. Our collective knowledge base of the interconnectedness of psychological and physical trauma continues to develop and deepen (Liang et al., 2022; Zaborenko et al., 2020; Maté, 2018; and van der Kolk, 2014). Increasingly, people are recognizing the very real nature of somatization. We can reflect on the contributions of Chaim Shatan in understanding traumatic experiences in what he called “post-­ Vietnam Syndrome” to reconceptualize BPSD from problematic behavior and begin seeing the behavior as a struggle for recognition (1972). As was mentioned previously, the prevailing thought is BPSD needs to be managed, and yet such an approach dismisses the communication of a fundamental need to be seen. When loss is riddled with unknowns, the bodily systems that create equilibrium are unduly taxed leading to extraordinary overload and systemic exhaustion. One outcome of this can be seen when “cognition is blocked by the ambiguity and lack of information, decisions are put on hold, and coping and grieving processes are frozen” (Boss et al., 1993; Boss, 2004, 1999). It is very possible that one manifestation of stress-­ systemic overload is what we are calling dementia. Even in instances where there are neurological changes, we do not yet know enough to be able to say that dementia is organically the result of neurological changes, or if systemic stress creates neurological changes, or if unvalidated grief episodes result in neurological changes, or something else entirely. Perhaps neurological changes are the product of systemic imbalances. Below, we will explore three areas of unvalidated or what Boss calls ambiguous loss, to further probe into this area of inquiry: understanding the significance of the psychological family, anxiety and depression, and measuring inner mastery.

Understanding the Significance of the Psychological Family The psychological family can serve as both a form of stress and a source of resilience. When communication with one’s psychological family is exhibited by a person diagnosed with dementia, there is a tendency to pathologize the behavior, labeling it, for example, hallucinatory in nature (one form of BPSD). What if instead

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of a person experiencing an inability to detach from a deceased loved one, they are using a memory of this relationship as a source of strength to support them in their current world which is rife with unknowns and vast unpredictability? Independent of a person’s physical status of alive or dead, their emotional absence or presence is fueled by our imagination rather than our senses (Waller, 1938). When the instrumental people of our life are dead, then people are kept alive in our body and mind. The ability to conjure up these memories speaks more to the creative strength in communicating and reliving moments as a way to temper the unbearable monotony of the present. Moreover, when we say the deceased love one is a version of the self, then what? One therapeutic goal may be to depathologize behaviors and support people in their attempts to work through previously unresolved losses. Could it be that unvalidated ambiguous loss later leads to dementia? Is it the most resilient of those diagnosed who are exhibiting some form of BPSD? If you spend a lifetime being encouraged to find closure in situations where closure is not possible, this has a progressive effect on the body. Systemically, we reach stress overload. Encouraging a space of comfort amidst the ambiguity is feasible, even years after the loss event. For others, when adequate support is not available or accessible, depression and anxiety can develop.

Anxiety and Depression A second area of both ambiguous loss and BPSD is anxiety and depression. As others have proposed, it is very possible that what we are calling anxiety and depression are more an outcome of the treatment protocols for dementia and BPSD, rather than a natural concomitant of a dementia diagnosis (Norberg, 2019). If this is the case, then our social institutions and people’s harmful stereotypes are creating these secondary symptoms (Scholl & Sabat, 2008). When a person is diagnosed with dementia, sometimes it is suggested they move into a care center or have in-home support. With this response comes many changes and unknowns within a person’s otherwise routine existence. For some, this can be quite a traumatic event. The situation for the person living with dementia symptoms can quickly cascade into a pool of uncontrollability, with decision after decision being made for the person. When people learn that trauma is clearly uncontrollable “fear gives way to depression” (Seligman, 1992). Numerous studies have linked dementia symptoms to the development of depression (Lenferink et al., 2017; Cerejeira et al., 2012). It is key to note here, that this discussion of depression is different from the exploration of depression as a modifiable risk factor discussed in the previous chapter. Distinctly, it’s the precipitating factor that distinguishes between the two. Here, we are discussing depression or apathy in the context of drawing parallels between unvalidated or ambiguous loss and sub-symptoms of dementia: BPSD, within the context considering a history of trauma.

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Measuring Inner Mastery A third area of BPSD, that overlaps with ambiguous loss is the role of performance mastery (PM). Among people diagnosed with dementia, this is measured by completion of ADLs. Typically, there is a strong focus on performance mastery as defined by standards outside of a person. The focus on ADLs uses a performance-­ based metric with people advancing or regressing to other activities based on another person’s evaluation. When PM is self-defined then depression and stress symptoms recede (Pearlin & Skaff, 1995). Most research efforts among people diagnosed with dementia have been on measuring performance mastery as assessed by completion of ADLs. Is there space for measuring inner mastery? Take for example Ryff Scales of Psychological Wellbeing, where areas assessed are: self-­ acceptance; a sense of autonomy in thought and action; the ability to manage complex environments to suit personal needs and values; the pursuit of meaningful goals and a sense of purpose in life. According to the psychometric developers, autonomy is measured by, for example: “I have confidence in my opinions, even if they are contrary to the general consensus,” with the respondent using a Likert scale 1–6 strongly disagree to strongly agree (Ryff & Keyes, 1995). It is very possible that novel therapies can be developed with an aim of increasing flourishing, thriving and sense of wellbeing among people living with dementia symptoms. As we will see in Chap. 6, DGT is one approach that with the proper process of grief work, a dementia brain can substantially rewire. When mastery is extinguished learned helplessness results from distortions in cognitive constructs of a person’s ability to succeed (Seligman, 1992). For some, the response to dementia symptoms unfolds in precisely this way. Miller discussed this in the context of the role women play in society (1976). We discussed this in the above section on models for understanding dementia and BPSD. The constructs of wholly absent or wholly present do not exist in nature. We can use this understanding as a model for living with dementia symptoms. When we add to the dementia experience a layer of grief, then the unattainability of absolute absence and presence skyrockets because now we have two systems where the present-­absent continuum are interacting (Boss, 1999). A recognition of the in-­ betweenness may help moderate some of the behavioral and psychological responses exhibited by people living with dementia symptoms. As has been illustrated, three areas of responses exhibited by people living with dementia symptoms are understanding the significance of the psychological family, anxiety and depression, and measuring inner mastery. When a history of trauma is ignored then behavior is pathologized and labeled BPSD (Dodek, 2013; Russell, 2013). I see each of these areas as highlighting the significance of what happens when we ignore a lifetime of losses and then compound the situation by engaging in protocols that retraumatize.

Chapter Summary

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Trauma-Informed Approach to Dementia Health Dementia health screenings and therapeutic practices that are trauma-informed and integrative could consider adherence to principles set forth by SAMHSA: trustworthiness and transparency; peer support; collaboration and mutuality; empowerment and choice; and cultural, historical, and gender issues. SAMHSA has offered four areas a therapeutic approach must consider: • Realize: Acknowledging the impact of trauma and understanding potential paths for recovery. • Recognize: Recognize the signs and symptoms of trauma in clients, families, staff, and others involved with the system. • Respond: By fully integrating knowledge about trauma into policies, procedures, and practices. • Resist: Seek to actively resist retraumatization. We now have three necessary supplies in our tool kit: a clear definition of trauma, an understanding of the global prevalence of trauma, and a consideration for the significance of adopting a trauma-informed approach. This discussion lays the groundwork for us to begin to consider the roles that grief might play in dementia development. Further, a history of trauma is an important area to consider when applying DGT techniques, as we will see in greater detail in Chap. 6. In the next chapter, we will expand on our understandings of trauma from an event, experience, and effect perspective and consider how when these experiences are not fully metabolized in the body the effect can be damaging.

Chapter Summary The purpose of this chapter is to make the critical argument that we have a social justice obligation to extend rights to all beings and in no circumstances should people living with dementia symptoms or BPSD be exempt. In any just society, all beings are allowed to flourish, not just some. One way people can flourish is to have access to opportunities to develop their emotions. We discussed some of the current models for understanding dementia and BPSD, highlighting the usefulness of adopting an integrative rights-based trauma-informed model. One of the reasons why this model will be helpful in the field of dementia health is to continue to incorporate both agency and identity in healthcare practices. We discussed this by exploring three areas: multimorbidity, symptomatology, and resilience. Within a social justice model of dementia health, we can rely on two concepts: liberatory critical consciousness and empowerment for expanding our knowledge of modifiable risk factors and developing appropriate trauma-informed therapies and interventions. Considering the history of a person’s trauma experiences, effects, and impacts on physical health demands more attention. The field of dementia health might also be

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more inclusive when practitioners adopt a trauma-informed lens. Additionally, dementia health advocates and policy makers who use trauma-informed language have a real opportunity to shift the common narrative of how it is to live with dementia symptoms.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Understand the process of recognition of past trauma experiences and how this history shapes and informs dementia health practices? 2. Use trauma theory to understand the lived experience with dementia symptoms. 3. Describe parallels between grief and dementia symptoms.

Further Inquiry It would be interesting to know more about global prevalence of trauma and the questions asked in the Benjet et al. landmark study (2016). What other models of thriving can be developed that take into account people who are diagnosed with dementia? Is it possible that grief work can substantially rewiring a brain to engage in the world differently?

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Chapter 3

Grief Recognition Within Dementia Health: A Global Perspective

Key Points • Attachment styles and differential experiences with grief. • Modifying factors in trauma effects and grieving process. • How do we benefit from a systems approach to understanding dementia grief?

What makes it possible for us to see our shadow even amid a world that is chaotic, painful, and seemingly shattered? Light. In the absence of light there too is the absence of our shadow. When our world becomes unthinkably devastating, we must allow space for the tears to arrive. Our bodies are not only crying for the present. Our body is also crying to heal the past. The body desperately wants to severe ties with a traumatic past that abusively applies oppressive control in the present (van der Kolk, 2014). When the tears gush out and we forcibly stop crying, then the effects of a traumatic past continue to offend in the present. One potential effect of trauma is a fragmenting of the self. Reorganizing these fragments and remembering the past demands a foundation of security, trust, and courage. May we all feel safe. In this chapter we will begin with a historical perspective of grief. We will also respectfully consider a cross-cultural perspective on grief as well as dementia grief. We will cover many components of the grief process, including using a systems approach to understand grief. I will tease out the finer parts of a repression of anger, how this might block the flow of grief and how this may in turn present as BPSD. We will turn toward the possible links between complicated grief and dementia, by utilizing Worden’s paradigm of complicated mourning reactions. I will offer a proposed theoretical model of dementia mourning. We will then engage in a brief cross-cultural exploration of grief expressed in Japan, India, and the United States. This will provide some context for understanding five existing theoretical models of

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_3

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dementia grief, by exploring background, structure, and application. We will conclude by understanding BPSD from a grief perspective.

What’s Grief Got to Do with It? Precisely, what is grief? From a historical perspective, we can turn to Freud’s theorizing contributions about grief work (1917). In his foundational text, grief is focused on and precipitated by an event of death, wherein it is suggested three steps must occur: detach, adjust, and reattach or develop other relationships. To borrow a definition from Therese Rando, grief is “a phenomenon encompassing the processes of mourning, coping, interaction, planning, and psychosocial reorganization that are stimulated and begun … in response to the awareness of … impending loss” (1986). Grief is the body’s attempt to restore balance after experiencing a threat. Grief is a basic human emotion, although the way it is experienced and conveyed perhaps differs across cultures. Or does it? Before we discuss the significance of a cultural context of grief, we must first situate the conversation within an understanding of dementia health. Grief, whether episodic or chronic, has deleterious effects on the body. Increasingly, evidence suggests that complicated and prolonged mourning manifests as physical ailments. When these events are unintegrated into the body, by being omitted from our lifetime narrative or at least robbed of a soft space to land, then for some the result might be dementia symptoms. If in fact it does, what then differentiates people living with dementia from others absent these symptoms who also experience unintegrated grief? It may be important to acknowledge losses experienced prior to receiving a dementia diagnosis, in instances where the losses remain unintegrated in one’s life. Let’s take a moment and turn toward two narrative examples of the potential value in honoring losses across the lifespan – ones that occurred prior to dementia entering a person’s life narrative. Joseppi, a 72-year-old Italian immigrant, to the United States, never processed the loss of connection with his parents when he moved from Marche, Italy to McClellandtown, Pennsylvania. At age 70, his wife of 50 years died suddenly in a train collision on which she was a passenger. Six months later, Joseppi, at a routine yearly physical check-up, was screened for Alzheimer’s and received a possible diagnosis. Hilda immigrated from Germany to New Orleans in 1912. She was pregnant when she left Germany and was forced by her parents to have an abortion. This loss was not acknowledged at the time, remained unacknowledged throughout her life. She became pregnant after being in New Orleans and experienced a miscarriage. This resulted in her husband leaving her. She was diagnosed with probable AD at age 86.

What value is there in considering the losses prior to dementia diagnosis? Does this play a role in co-creation of a plan of optimizing one’s health and overall wellbeing? How does knowing about a person’s losses prior to diagnosis offer support in the process of creating systemic balance within the body? There is a rich history of scientific inquiry into the physical manifestations that other emotional states have on the body. In a recent report, Social Isolation and

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Loneliness in Older Adults, researchers identified one quarter of Americans report feeling socially isolated (National Academies of Sciences, Engineering, and Medicine, 2020). Of these community members, many also report feeling lonely. Now, take the following scenario into consideration: You just received a diagnosis of Lewy Bodies Disease. Potentially with this comes a lifetime of conceptual understandings of what it means to now be living with dementia. For some, this experience is traumatic or stressful or understood as a loss. We discussed some of the possible bodily effects in the previous chapter, where stress, grief, and trauma have parallel effects on the body – in particular the HPA axis. The HPA axis is a critical network that modulates cognitive, immune, and behavioral responses to stress (Lupien et al., 2009). When this network is taxed the body operates in overdrive in an attempt to establish equilibrium. According to Prigerson et al., complicated grief (CG) is a distressing psychological condition with negative health and life quality consequences (2008). On the surface, this sounds similar to the symptom of dementia. What might we see if we were to view MRI scans of the brains of people experiencing CG and overlay these with brain scans of people affected by dementia? Is it too big of a leap to suggest a correlative relationship? Bartrop and colleagues, in 1977, posited the first immunological explanation for the stress connected to CG. T-cell functioning was severely reduced in the study group of widows. In the decades to follow, researchers continued to explore the physiological responses to CG among other study groups, with Philips and colleagues studying older people and finding a similar pattern to be present (2006). These findings all point to the idea that one form of life stress is bereavement. It is important to understand the biomarkers of CG in order to create novel therapeutic approaches. The brain is one system that is affected – predominately the dorsal anterior cingulate cortex (dACC) and the dorsolateral prefrontal cortex (dlPFC). These are areas also highlighted in neuroimaging of brains of people affected by NCD and in particular BPSD. Similarly, the mind-body connection is exemplified in our understanding of PTSD and imaginal flooding treatment methods, where the predictive factor of heart rate variability is used to determine therapy outcomes (Pitman, et al., 1996). The diseases that produce dementia symptoms are multifaceted and as such, require a multimethods approach. We will now consider another lay of the lived experience for some with dementia symptoms and that is chronic, delayed, and exaggerated grief symptoms.

Chronic Grief Reactions With chronic grief reactions, the struggles intertwined with the loss are within the awareness of the bereaved. However, one may be unaware of the specifics of three complementary aspects of the original loss, and with the support of a trained therapist are able to: identify unresolved tasks of mourning, explore influences of mediators of mourning on nonresolve, and focus of intervention is on tasks. For many, the

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focus is on actualizing the loss (Task I; Worden, 2018). I wonder, when this task goes unaddressed for a period of time, is it possible for a person living with dementia symptoms, to also process the unmet needs of the original mourning episode? Depending upon the bereaved’s attachment style, focusing on making new relationships (Task III) may be a key focus of grief interventions with people living with dementia symptoms. It is important to note here, that work must first be done at the internal level where a secure attachment style is developed between the self-other within, before seeking secure attachments with external others. As has been discussed previously, the other within is the dementia self. Full integration of the dementia self is necessary for establishing a cohesive and present self-narrative. Relationship formation with the other within requires a reliance on skills that may offer a measure of self-protection at a time when feeling unsettled or insecure. People experiencing chronic grief struggling with this relationship component (Worden, 2018). The Neuropsychiatric Inventory (NPI), the standard for measuring neuropsychiatric symptoms in people living with dementia, measures this domain – agitation. Another manifestation of agitation is searching for deceased relatives or friends, also labeled BPSD, which as Worden suggests is a behavior that is present in normal grieving (2018). When grief discovers a soft place to land within the body and gently becomes woven into our coherent narrative, then searching behaviors cease.

Delayed Grief Reactions Much like chronic grief where struggles are within the present awareness, people who experience delayed grief reactions are also aware of the excessiveness of their current reactions. In short, delayed grief responses present when a person experiences loss (A) on X date and grieves, although due to a disruption in mediators the person does not reach full resolve or integration with loss (A). Following a period of time, the same person experiences a loss (B) on Y date and grief from A combines with B and the response to B incorporates A.  As it relates to people living with dementia, who also live in memory care centers, there are not only losses of roles once fulfilled by the person, there are also losses of space, time (absent a daily agenda), among many other losses. If a person living with dementia never dealt with all previous losses, reaching full understanding, integration or resolve on all, then they may be dealing with delayed grief – all the more reason why validated measures of grief should be incorporated into initial dementia screening, therapeutic intake sessions and re-administered regularly.

Exaggerated Grief Reactions Another category of complicated mourning is exaggerated grief reactions which share a similar element of personal awareness to the two previously discussed sub-­ reactions to complicated mourning. People recognize that their symptoms and

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behaviors are related to a loss. People in this category differ in that the current loss triggers a history of debilitating symptoms, leading to an inability to manage in the present loss situation (Worden, 2018). Unique to this reaction is the opportunity to learn methods of emotion regulation (Task II), as well as creating a life without the loss (Task III). A resolution can be created by meeting in the present, these two previously unmet tasks.

Masked Grief Reactions Unlike the previous three reactions, with masked grief reactions the current struggles are unconscious, and the person is unaware of the connections between loss and symptoms. Simply put, a person must identify and resolve the conflicts with separation and connect current symptoms to the loss. Physical and mental symptoms shift in proportion to separation identification and loss connection. If mind-body memory centers within people living with dementia are held out of reach to them, then this would be synonymous with someone not diagnosed with dementia being unconscious of the impact of an event. Thus, if we incorporate in dementia treatment protocols with a person living with dementia elements inherent in therapeutic interactions with masked grief reactions, then what sort of cognitive shifts might we see? We already know there is a direct and immediate link between cognition and emotion and so what if the emotional sphere were considered primary to cognition? It is important to recognize in the day-to-day interactions with people living with dementia symptoms, that their current behaviors and emotions may be expressing grief in the present, although in fact they may be reliving the unmet needs or attachments of past events. What benefits are there in offering grief therapy to people living with dementia? Dementia health assessments could consider Worden’s paradigm of complicated mourning reactions, by accessing chronic, delayed, exaggerated, and masked grief reactions. Let’s take into consideration one final area to consider in the process of metabolizing complicated mourning: the power of dreams.

Power of Dreams Another important area to consider when embarking on a process of metabolizing complicated mourning is the power of dreams. Some people living with dementia symptoms report experiencing hallucinations. Recent study findings suggest there is considerable overlap in brain mechanisms involved in both states (Waters, et  al., 2016). Perhaps a window into the world of a person living with dementia symptoms is through thematic investigations of hallucinations. In line with Worden’s suggestions of dreams paralleling the mourning process, and specifically the task within which one is struggling, perhaps hallucinations parallel the mourning process (2018). Further, if hallucinations are reframed as a tool that is helping the person

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living with dementia symptoms to integrate troubling affects, then a road to wellbeing may be paved (Worden, 2018). The similarity between dreams and hallucinations can be attributed to the involvement in similar neurochemical mechanisms and the role of serotonin.

Understanding the Mourning Process Grief is the antithesis of homeostasis. Grief and mourning are a dynamic amalgamation of past, present, and future beliefs, emotions, neurotransmitters, and environmental contexts. We keep past experiences alive by holding memories and sharing narratives of these remembered moments. Our current emotions and beliefs mix with our environments and cultures to offer a lens through which we view our losses. Expectations, which belong to the realm of future perceptions, inform our current processes of making sense of our losses. One way we can conceptualize losses inherent in a diagnosis of dementia is to remember that each person is like all other people diagnosed with dementia; each person is like some other people diagnosed with dementia; and each person is like no other person living with dementia (Allport, 1956; Tolstoy, 1995; Langer, 2023). It is important to acknowledge the uniqueness of a person. Arrive in meeting a person you have known for years as if it is your very first encounter. Historically, grief counseling has followed a similar trajectory to grief experienced at a microlevel – with a past, present, and future. Beginning with Freud, in “Mourning and Melancholia” he suggests that one must break an attachment bond with the deceased and reinvest this into another bond to successfully negotiate the bereavement process (1917). By the mid-twentieth century, Bowen, Minuchin, and Satire introduce the importance of recognizing the context of grief which occurs in systems or communities. In other words, our experience of grief is immediately influenced by the reactions to, and interactions with, others in our environments, to the ways in which we grieve. We then move into the future category of grief where, informed by Beck and others, we see solution-focused techniques employed. I will discuss grief therapy, from the perspective of past, present, and future, within the context of people living with dementia symptoms.

Past When faced with opportunities to learn from grief, we begin from and rely on, a foundational understanding of our world. In part, these foundations are constructed on the role of attachments as well our locus of control. As Worden claims in his third task of the mourning process, three areas of adjustment are the focus: external,

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internal, and spiritual. These overlapping spheres of adjustment are particularly intriguing when viewed within the context of a person diagnosed with dementia. We have the effects of loss on environmental functioning, one’s sense of self and one’s understanding of the way the world operates. What happens when a person is grieving and then does not receive adequate professional support and essentially grieves within an isolation chamber? Grief work has been presented as stages, phases, and tasks. Worden posits the usefulness with tasks is an implied action, suggesting that time by itself is not what heals, rather healing is accelerated or slowed based on what is done with (1991). We might also consider how time is experienced (Aungle & Langer, in press). In our industrially constructed society, we are encouraged to do and produce and show relevance, when perhaps there is much more value in simply being. Being with the pain of loss. There’s also a difference between simply healing (or restoring homeostasis in the mind-body landscape) and transforming the experience into an increase in self-efficacy which necessitates insight (Shulman, 2018). As we have identified in the previous chapter, some people living with dementia symptoms are not absent the capability of insight. The work of Sandler and colleagues, on what they term a contextual framework of adaptation, lends a supportive hand in understanding the components of grief (2008). Contemporary therapists committed to grief work, value the significance of environment and recognize that we do not grieve in isolation. Nor do systems within our body grieve in isolation. Although the work of many theorists have been helpful in offering guidance and structure for optimal healing from trauma and restructuring of life for future endeavors, we have yet to comprehend the gravitas of whole-­ body grief. We can see a nod to this connection in Freud’s works on the subject. It appears in a footnote and reads: “the affect of grief and its outward manifestation” (1917). Simply put, mourning is not only about experiencing the swirl of emotions, it too is also about recognition of bodily experiences. Perhaps so deep is the mind-­ body connection that actually our bodies, at a molecular level, know grief before we have the linguistic capacity to express our sorrows. A person can simultaneously intellectualize the gravity of a loss and emotionally minimize the impact (Worden, 2018). Grief is complex. Grief knocks on the door and begs us to rearrange the shattered fragments of a loss and put them in an order that creates a new world where we can thrive, or at least live initially (Stroebe, 1993). The process of grieving is made even more complex when the loss is a version of the self. This concept is discussed at length in Chap. 2, we’ll explore it deeper in a below section and we’ll see a return to it in Chap. 6. We can interrogate the space where a person simultaneously knows and doesn’t know  – middle knowledge  – and begin to construct a bridge between the two worlds (Weisman, 1972). Feeling settled with this process of being open to discoveries emerging from the middle knowledge predisposes a foundation of secure attachments. Attachments will be discussed at greater length in a below section and in Chaps. 4 and 6.

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Future In the evolution of therapeutic methods, we can now see a major push toward brief and solution focused techniques. As we focus on the future perspective of grief, we can see the value in asking questions such as: “When are times throughout the day where you do not feel this way,” and then exploring “What happened right before not feeling this way?” We can also see the usefulness in applying de Shazer’s Miracle Question to people grieving (1982). In summary, a participant imagines a miracle happens while they are sleeping, and they wake up without the loss. Or, a participant wakes up without any dementia symptoms. In either case, the participant is asked to describe how their life is different upon waking and discovering this miracle. It’s important to not gloss over the deepness of the loss, and yet also allow a person to see a way out. At present, dementia is sometimes seen as a loss with no way out. Traveling down life’s roads and then discovering every turn leads to a dead end. Increasing access to grief counseling is one way out. Attachment bonds, appreciation for grieving within specified contexts, and acknowledgement of the grieving process extending beyond the boundaries of thought patterns are three ways to not only conceptualize grieving, but also to provide a structure for understanding grief work. As we have explored the therapeutic roots of grief counseling, we can now see the immensity of the interplay between emotional, psychological, physical, and spiritual systems when faced with loss. Grief is a phantasmagoria of horror, curiosity, and everything in between. It is for this purpose, that we must begin to consider the roles of trauma and grief within the context of dementia health. To deny an entire group of people the opportunity to heal, is equivalent to sentencing a person to an isolation room, void of windows and doors – no possibility of escape, where a reel of intense losses is projected on all four walls and plays continuously. Perhaps we know these rooms by another name – memory centers. As a species, we can be better. We know better.

Mediators of Mourning In taking explanatory control over dementia and grief, then we might consider Worden’s mediators of mourning (2018). From this perspective, we can see where, for example, the type of relationship between the deceased (former self) and the mourner (the dementia self) has a mediating effect on lived experience with dementia. Worden delineates seven aspects of mourning: relationship with the deceased, degree of attachment, particulars of death (sudden or expected), historical antecedents, personality variables, social variables, and externalities of loss (2018). While all of these areas are important and can be used within dementia health, for our discussion here, let’s focus on three (attachment, personality variables, and social variables) within the context of a dementia diagnosis. It’s important to keep in mind, we are coming from the perspective that a person diagnosed with dementia may be mourning versions of the self.

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We could think of grief as a phase in the chemical sense where a homogenous form is separated by its surface from other forms. Psychologically, the cohesive unit of the self is separated by the deceased from other attachments. A Feudian understanding of grief suggests that healing occurs when the mourner detaches from the deceased other and then reattaches to another other. However, this becomes an ever more complex process when the self-other dyad is contained within a single body; when the mourning of the deceased is for a part of the self that has been diagnosed with dementia, as well as idealized future selves.

Attachment Styles Considering interactions between micro and meso worlds of people affected by dementia (individuals and their immediate carers), can help us begin to understand the lived experience. People with ambivalent attachment styles exhibit greater depression and anxiety as compared to their secure and avoidant counterparts. In one study of 168 people living with dementia symptoms, avoidant styles presented increased activity disturbance and paranoid symptomatology (Magai & Cohen, 1998). These behaviors are typically recorded as BPSD and interpreted by carers from a deficiency perspective. Could it be that some forms of what we label BPSD (calling out, yearning, searching) are manifestations of grieving? Sometime, there is a loss of emotional connection, intimacy and human touch for people living with dementia symptoms. Further, this loss typically goes unacknowledged. These particles of energy, when unacknowledged by others in the immediate environment go somewhere  – perhaps deep within our cells. We have multiple bodily systems involved: cognitive, emotional, physiological, spiritual, physical, and sexual. It is necessary to take a whole-body approach to grief, especially for people living with dementia.

Personality Variables A second aspect of mourning that should be considered in treatment development is personality variables. For example, knowing a bit about the person prior to their diagnosis and where on the neuroticism-extraversion continuum they land can be quite helpful in not only communication styles, also in tailoring treatment methods to their style. Just as with grief being unique, so too is dementia. Creating an individualized approach is absolutely necessary. Other aspects of personality that might be considered are types of coping: emotion-oriented, task-oriented, and avoidance-­ oriented (Robinson & Marwit, 2007). We can see the overlap between attachments discussed in the previous subsection and personality traits discussed here. In other words, secure attachments are an example of protective factors that can inform the development of adaptive personality styles. A third contributing factor in mourning are the presence or absence of social variables.

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Social Variables There are numerous social variables that contribute to one’s experience with grief and dementia. Most notably is the stigma surrounding a diagnosis. One type of stigma is fueled by the public’s fear and lack of knowledge on dementia (Mukadam & Livingston, 2012). Another type of stigma is the self and internalization – prejudice that people with a diagnosis turn against themselves by internalizing the negative attitudes they perceive from society (Werner & Heinik, 2008; Mukadam & Livingston, 2012). We can apply Sandler’s concept of contextual framework of adaptation to understand all of the particulars involved in a diagnosis of dementia. The diagnosis is not simply applicable to a single person, rather the person is a matryoshka (a Russian nesting doll) – nested within themselves and within a social context which is nested within the global sphere of living. Perhaps even before the formal delivery of information by a medical professional, our bodies begin the grieving process. Sometimes, management of the disease is focused on the presumed cognitive deficiencies and cholinesterase inhibitors or memantine is prescribed. If, rather than exciting the limbic system, what if a natural calming of the limbic system is what is needed? We know from the previous chapter that molecular adaptations in neuronal function is one effect of exercise (Morgan, et al., 2015). So then perhaps following a session where the limbic system is calmed, then it needs to be excited with physical exertion. Another contributing factor to the impact social variables have on a diagnosis of dementia is the involvement of social roles of the person diagnosed. What happens when a person is plucked from society and placed in a memory care center with multiple other unknown people to live out the rest of their life? People’s previous roles changed and so what roles do they assume now within a new living environment? A grieving of their lost previous roles seems to be a necessary pre-step in reestablishing new roles. What difference would it make in people’s day-to-day existence within memory care centers if their losses were acknowledged, rather than shuffled to the hinterland with tasks of daily living taking front and center stage? Gorer reminds us that people’s responses to condolences can provide a window into the mourning process that is being experienced at the individual level (1965). Another potential layer in a diagnosis of dementia comes an increased awareness of mortality. We have focused on three valuable aspects of the mourning process (attachment, personality variables, and social variables) and have discussed them within the context of a dementia diagnosis. In the development of therapeutic techniques aimed at supporting people living with dementia symptoms to experience mind-body homeostasis, it is absolutely necessary that we consider the demanding role grief may play. It is important to acknowledge that it is not only episodic grief presented at the stage of a dementia diagnosis, it is also years of compounded grief, recognized and unrecognized as well as internalized and externalized, that possibly contribute to one’s present experience of living with dementia. Shortly, we will discuss three components to grief work: identify and experience feelings, living without the deceased,

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and find meaning in the loss. First though, as part of our understanding of the mourning process, we must also consider the systems within which loss and mourning occur.

Systems Approach to Mourning Humans grieve in community. We do not grieve in isolation. Individual losses are embedded within the context of a family unit – a community. The defining features a family and a community ascribe to a loss, directly informs grieving and subsequent meaning making (Nadeau, 2008). An intricate web of family dynamics, composed of attachments, roles, communications, and personality types provide structure and either help or hinder the process of mourning, grieving, and resolve. For the purpose of this section, we will focus on three components of a family systems approach to grief, within the context of a person living with dementia, by considering the importance of: historical losses, role adjustments, and physical-­ emotional losses. We will conclude this section by positing a conceptualization of a theoretical construct of a model of mourning for people living with dementia.

Historical Losses A person who is diagnosed with dementia lives and operates within the context of a history of losses. In other words, recognizable cognitive shifts are housed within a person with a history. It is very unlikely that a person age 85 and greater has not experienced a single loss, rather most likely, the person carries an amalgamation of losses. These losses are simultaneously personal and shared. In some instances, as we have discussed, some losses may be disenfranchised and others hidden. The person living with dementia is dealing with their losses, while others connected to the person also have their own version of loss. At the same time, each person’s history with their own losses informs their current losses. Performance mastery (PM) with previous losses hold the potential for increasing self-efficacy (SE) in the current loss episode. The concept of ancestral loss or intergenerational trauma is an important and evolving area of inquiry that simply is not able to be covered in depth here (Menakem, 2017). When we discussed ACEs in Chaps. 1 and 2, this measure is part of the concept. It’s not the whole picture. In brief, abuse and violence create genetic changes and this gene alteration is then passed to offspring (Jiang et  al., 2019). Others suggest considering cultural, structural, and historical contexts within which trauma occurs (Cerdeña et al., 2021; Bombay et al., 2009). Trauma transcends one person’s lifespan and can spread across multiple generations.

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Role Adjustments Each person has a unique understanding and beliefs about the dementia experience (Nadeau, 2008). Each child of a person living with dementia has a different attachment and role. In the initial stages of diagnosis, roles adjust and this needs to be acknowledged. Perhaps a construction of co-roles could be considered. For example, when a mother is diagnosed with dementia and children take over decision-­ making, I wonder about the neuroplastic power of co-decision-making, one informed by a Vygotskian idea of development (1978). His theory of a zone of proximal development, where two people with close but different capabilities work together to increase their capabilities, can apply to the shifting roles with a person living with dementia.

Physical-Emotional Losses A third area of losses to consider when applying a family framework of grief is the physical-emotional losses experienced by people living with dementia and their families. Grimby suggests the greatest amount of emotional loneliness is experienced by people who enjoyed the most harmonious marriages (1993). One possible manifestation of witnessing a family member’s physical-emotional losses can be seen in a rise in one’s own existential anxiety resulting from an expanding awareness of another’s personal mortality (Worden & proctor, 1976). In this section, we have considered the fruitfulness of a systems approach to grief by exploring three areas: historical losses, role adjustments, and physical-emotional losses. We will now explore briefly a conceptualization of a theoretical model of mourning for people living with dementia. It is important to recognize the value of people living with dementia and incorporate their capabilities into a theory of mourning. In our brief introduction to a model of mourning, we will explore three areas: living without the deceased, identify and experience feelings, and find meaning in the loss.

Theoretical Model of Dementia Mourning An area with scant research is a model of mourning appropriate for people living with dementia. Some have questioned: Do people living with dementia mourn? According to an information sheet published by Alzheimer’s Scotland, “The mourning process may be experienced by people with advanced dementia but they may not have the cognitive skills to resolve or make sense of their grief” (2011). Rather than question, test and measure if people diagnosed with MCI or related dementias

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mourn, perhaps what is needed now more than ever is an appropriate cognitiveemotional model within which people are able to tease out the complexities of their losses, wrapped in a history of losses and suspended by a diagnosis. Making sense of a loss is dependent upon a model that is fitting to a person’s cognitive-emotional place on a continuum of awareness. As suggested in the above noted publication, “Loss of cognition should not be confused with the absence of emotion. We know that, however severe the dementia is, the person is still able to feel emotions” (2011). When a person is able to make an emotional connection with the cognitive concepts of “finality, transformation, irreversibility, causality, inevitability, and concrete operations” then the process of sensemaking can occur (Smilansky, 1987). With access to the appropriately applied therapeutic techniques, people living with dementia symptoms can create new neural pathways that support the formation of concrete operations. Instead, the literature on grief with people living with dementia is flooded with caregiver tips, rather than focusing on the potential grief of a person with dementia (Blandin & Pepin, 2017, Noyes et al., 2010). One often repeated tip is to uncover or connect with the feelings portrayed in questions asked by a person living with dementia. A person experiencing cognitive shifts is expressing themselves in the only ways they know how. All too often, these expressions of mourning manifest as agitation, anger, searching, repetitive behavior, and the like, and are labeled BPSD. In what ways would your experience with living with a diagnosis of dementia shift, if what is currently labeled BPSD are instead labeled capabilities and then used as stepping stones along a continuum of mourning-grieving-integration? A theoretical model of mourning for people with dementia must consider one’s history of losses. Our own identities must be reshaped in order to fully severe ties with the deceased former self (Volkan, 1985). As one’s identity potentially shifts with a diagnosis of dementia, performance mastery of previous losses experienced in one’s past can be used as capabilities or strengths to support the person in the present. Grounded in the work of Worden’s tasks of mourning, a theoretical model of mourning for people living with dementia can be conceptualized as a circular continuum with multidirectional movement (2018). After assessing mastery of previous losses, acknowledging the impermanence of current cognitive-emotional loss, process any additional feelings that arise, adjust to a world without the former self, and acclimate to current life. The idea is that people may land on these stops at varying points in their journey. Further, a single stop may be visited multiple times and in varying order, similar to bus stops on a given route. In the absence of absolute integration with a previous loss, it may be necessary to travel a different path. Each loss has a unique path to integration. When the process of grieving is vehemently avoided by the mind, the body responds (Bowlby, 1980). A version of a theoretical model of a mourning process for people living with dementia symptoms can be viewed in Fig. 3.1.

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Fig. 3.1  A theoretical model of mourning for people living with dementia symptoms

Identify and Experience Feelings Often is the case where dementia is discussed in terms of deficiency. Rarely is it so that dementia is identified as a strength. If a miracle occurred and anyone who viewed dementia as a deficiency was suddenly stricken with amnesia and reprogrammed to view dementia as a strength, how then would our world be different? One way to engage in this hypothetical scenario in a very real way is to ask a person diagnosed with NCD: “What do you miss?” After allowing space for contemplation and a reply, a follow-up question could be: “What do you not miss?” Presenting these questions offers space for the person to begin to acknowledge an amalgamation of negative and positive feelings wrapped in a diagnosis, thus initiating a balance of feelings and ensuring that one set of feelings does not preclude the other set. In other words, allowing space where both can be true. Anger is important to identify and experience. The source of anger is two-fold: frustration and regressive helplessness (Worden, 2018). It’s not always recognized that anger is present and to whom the anger is directed. Normalizing anger toward the deceased self, is a necessary and important step in the process of adapting to one’s new life. Retroflected anger, especially when unacknowledged, can lead to “depression, guilt and lowered self-esteem” (Worden, 2018). When grief overlaps with the field of dementia we can see where these are labeled BPSD.

Living Without the Deceased Imagine being told you can no longer care for yourself and becoming separated from society as you have previously known it and placed in memory care. To what degree would this transition in living environments have an impact on your feelings of fear and anxiety? Anxiety is a normal response to separation (Shear & Skritskaya, 2012). When separation occurs within and people are not allowed space to process feelings of anxiety, then what? One way to frame anxiety and helplessness in a constructive way is to use the technique of cognitive restructuring.

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Cognitive restructuring allows space to explore ways people navigated their worlds prior to their diagnosis. Further, this technique “may be necessary because our thoughts influence our feelings particularly the covert thoughts in self talk that constantly go on in our minds,” (Worden, 2018). All feelings, experienced and expressed, need to be focused (van der Hart, 1988). Furthermore, balance serves a protective measure against feeling overwhelmed and hindering the adaptive process of grief. A recognition and appreciation of feelings is necessary for initiating the dynamic exploration of living without the former self. A significant factor to consider in achieving mind-body homeostasis, absent a former self, is making decisions independently (Worden, 2018). As has been suggested elsewhere in the literature on practices aimed at increasing self-efficacy, identifying areas where people have executed control successfully can lend a hand in strengthening what is already strong. For example, participation in an activity, what to eat or drink, or which shirt to wear are all examples of where people can maintain independence by acting on their environment. Conversely, when choices are limited or non-existent, when all activities of daily living (ADL) are completed for a person, then feelings of helplessness and insecurity increase. It is a long-­ established fact that feeling safe and valuable are fundamental human needs. Involving people in the decision-making process is a way to meet both of these needs.

Find Meaning in the Loss Feeling valuable and safe is a necessary precursor to establishing meaning in times of loss. Perhaps an environmental condition that holds the potential for extending personal value and safety is the close proximity of living to green spaces. A recent study by the Max Plank Institute reveals the power of the forest. Brain structure and functioning are directly shaped and altered by the environment. For example, the degree of proximity of nature has impacts on the amygdala. Data collated from self-­ assessments and MRI scans of 341 study participants, ages 61–82, indicate structural changes in the amygdala (Kühn et  al., 2017). With a healthy functioning amygdala, part of the limbic system and the specific region responsible for emotion regulation, grievers are able to navigate, find, and assign meaning in the loss. Active engagement with identifying and reassigning meaning to loss may at first glance seem to be a nebulous process. However, the value of the process may exceed the outcomes. The skill of transforming a world shaped by loss (and love) is more significant than the outcome of the process (Schwartzberg & Halgin, 1991). An unveiling of meaning is time-sensitive. Introducing ideas of growth-related awareness too soon can have a diminishing effect on the significance of the loss (Gamino & Sewell, 2004). Discovery must be organic and self-informed. In other words, the griever must internally identify meaning rather than discover through a process of externalized meaning. Although some parts of people living with dementia symptoms may be changed immunity from feeling grief is not one of these changes. It is inhumane to deny the

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facilitation of the grief process among dementia mourners. Within the context of NCD diagnosis, we have seen that three of Worden’s principles are of great significance: identify and experience feelings, living without the deceased self, and find meaning in the loss. By adopting professional practices that adhere to these standards of grief intervention, we might begin to discover a route to full integration while living with dementia symptoms. In other words, not a cure for dementia symptoms, rather a changing relationship with what it means to live with dementia symptoms.

Cross-Cultural Representations of Grief As has been established in this book thus far, the experience of grief is universal (Derek Brown et al., 2022; Coreless et al., 2014; Walker & Pomeroy 1996, 1997; and Walker et al., 1994). What might differ across cultures is what sub-emotions are experienced and the way they are expressed, and whether public or private displays of grief are acceptable or rituals in the transformation process are typical. Part of this discussion on grief will hinge on a very brief exploration of COVID-19 from the perspective of people’s experience with grief in three countries: Japan, India, and the United States. In this section, we will discuss other types of grief work being done within each country. On the door of our global house, a houseguest of grief knocks (Moules et al., 2004). In March 2020, a global pandemic was declared, and in the years that followed, people grieved in many different ways. And yet, this single event held the potential to unite the global citizenry in a single emotion. It is when we get into sub-emotions (anger, shame, guilt) that rather than uniting we witnessed (and continue to see unfolding) an increase in global tensions. Moreover, it is important to highlight the significance of language in emotion representation. Not all languages hold a direct word translation of grief. Instead, there are approximates or words that include a much larger conceptualization of the process of grief. For example, in Portuguese, sofrimento is used to understand grief that accompanies a loss. A direct translation in English, of this Portuguese word, is suffering. Although in Brazil, sofrimento is understood as the grief emotions that accompany an event of loss, adversity, or trauma. It is important to note that grief experienced is different from grief studied. In other words, the way grief is talked about in academic literature may differ from the lived experiences of grief (Silverman, 2007). From day-to-day living, to wearing black, to writing on black edged paper, to membership in the International Society of Traumatic Stress Studies, we will find variations in how grief is discussed. Batja Mesquita, a social psychologist, has put forward the idea that emotions do not occur within individuals, but rather between people (2022). She suggests that we learn social contexts for emotion expression in relationship or community. Similar to the houseguest metaphor mentioned above, when we prepare a room within the house for grief to feel welcome, then our relationship becomes less fraught and we learn

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to have a lifelong relationship with loss (Moules et al., 2004). By no means, in what follows on grief, am I intending to offer a comprehensive representation of grief in these countries, rather a simple snapshot. Or, put differently, we are taking the temperature of each country. As we know, there is much more to overall health and wellbeing than can be revealed by a simple temperature check. This said, we will now look at literature on three countries to understand a bit about the grief process: Japan, India, and the United States.

Japan In a country marked by respect, a strong cultural identity, and humbleness toward life we can say grief expression has a mixed history. It has only been since the turn of the twenty-first century that Japan was been introduced to alternative ways of grieving. One way of understanding appropriate and traditional grief expressions may be to view emotions through a religious lens. According to a U.S. Department of Justice (2020), Report on International Religious Freedom: Japan, by the U.S. Department of Justice, Japan’s population is comprised predominately of followers of Buddhism and Shintoism, 46% and 48%, respectively (May 12, 2021). Within these spiritual practices, grief is expressed communally and privately. Shinto tradition sees death as an impurity, whereas Buddhists’ believe quite contrarily, yet both still engage in purification practices. One purification practice is morishio, or piling salt at the outside entrance to a home as a way to protect the home from impurities entering. This cleansing process can be seen as a form of detachment from impurities. Put differently, this is a supportive ritual aimed at reorganizing the fragmentation that occurs with loss or trauma. A leading news agency in Japan, Kyodo News, reported on a story of “grief care,” a new concept to arise in Japan in the recent past (Mera, 2022). There has been a cultural shift where municipalities are embracing the importance of optimal mental health. Mikiya Nakatsuka, a professor at Okayama University Hospital, has been instrumental in increasing the country’s awareness of grief. One example of this cultural awareness shift can be witnessed in the way miscarriage and still births are increasingly recognized as an actual loss. Some grief promotion tactics that are being supported by the Ministry of Health, Labor and Welfare, is the release of a handbook. Grief efforts are being supported by prefectural governments and seeping into the lives of people across the country. Another example of institutionally realized importance of grief efforts in Japan is grief’s close proximity to trauma. Grief is one response to trauma. In March 2002, the Japanese Society for Traumatic Stress Studies was established. While their aim is to increase public understanding of the effects of trauma, there larger impact came 8 years later when they joined the Global Initiative of the International Society for Traumatic Stress Studies (ISTSS). A total of eight groups joined together with a shared commitment to the global significance of trauma (Schnyder et al., 2017). The group identified child abuse and neglect as being the origin of later life traumatic

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stress and diminished health and organized efforts around this single cause. The group identified the importance of promoting emotional, mental, and physical health of adults and through psychometrics, just how devastating childhood trauma can be on later life health. As we saw in the previous chapter and will see a return to this discussion in the next, there was a study in Japan identifying a relationship between childhood trauma and later life dementia development (Tani et al., 2020). We can also ponder the role grief, a response to childhood traumas, has through its lingering effects on adult health outcomes. We explored in the previous chapter research on the link between ACEs and dementia development. Here, we are focusing on complicated grief. One event that can be viewed as playing a pivotal role in the way grief is nationally recognized and supported, is the Great Earthquake of 2011. From this experience a solid foundation was laid so that when the pangs of COVID-19 spread across Japan, there was some preexisting infrastructure. Although lacking in telehealth delivery system, there were some important grief supports. For example, researchers at Musashino University, in the National Center of Neurology and Psychiatry, developed a Japanese equivalent of complicated grief treatment (Okazaki & Nakajima, 2018). Other previously developed treatment methods, cognitive behavioral therapy focused on grief aspects were employed quite usefully in the wake of COVID-19 grief (Kurosawa et al., 2018). Other research looked at how COVID-19 interfered with the grieving process and highlighted the importance of increased public awareness of prolonged and complicated grief responses (Matsuda et  al., 2021). In sum, we can see the multifaceted ways the process of grief is being encouraged and supported in Japan. Now, let’s turn toward the important grief work being done in India.

India Two researchers at the National Institute of Mental Health and Neurosciences, in Bengaluru, India, submitted and had accepted for publication, a letter to the editor of Asian Journal of Psychiatry an urging of governments to consider the potential unseen ramifications of COVID-19 (Nair & Banerjee, 2020). The researchers acknowledge a range of losses from complete death to autonomy to dignity. In their urging of protecting quality of life for everyone in India, one of their suggestions is to consider the impact of anticipatory grief on people who are elderly and living alone and also living with dementia symptoms. Institutionally, the Indian Council of Medical Research has offered guidelines on the grieving process to potentially counter the externally imposed disenfranchised grief of COVID-19 (Singh, 2021). For example, Singh suggests that as disruptive as COVID-19 is posing to the grieving process, adherence to “some common modes like ‘condolence meetings’ or ‘smaran sabha’ which should be attended by both family members and colleagues,” can soften the edges (2021). Sharing of grief is a widespread practice across India. It is important to note the significance of age,

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class, community, gender, caste – all of which are social variables contributing to the defining of grief rituals. We discussed this previously in the section on Mediators of Mourning. Religion can offer a framework for understanding the grief process. According to the Pew Research Center, nearly 80% of India’s population identifies as Hindu Census of India, 1951–2011 (2021). Thus, the typical duration of grieving ranges from 2 weeks to a month. In the context of death, it is believed the soul is encouraged to journey when grieving is minimized. Put differently, when mourning is excessive, then the journey of the soul is hindered. We can turn to a foundational Hindu text Bhagavad Gita to understand one interpretation of grief experienced. The text offers a way to delineate between the body and the soul, when Krishna explains just “as a person puts on new garments, giving up old ones, the soul similarly accepts new material bodies, giving up the old and useless ones” (Chetan, 2015). This is one way of viewing loss in the context of reemergence. Rather than a finite ending or absolute halting of all existence, there is a continuation, an evolution into otherness. Any discussion of grief, absent a mention of the role of technology would be incomplete. The collective expression of grief has been catapulted by COVID-19 and received by the soft embrace of internet access and social media sites. While posting tributes or eulogies on-line was foreign to many in India in a pre-COVID era, grief has long been embraced. The performative act of crying is depicted throughout India’s history from Indian folk art to Bollywood films to Instagram shorts (Basu, 2023). Grief in all of its varied forms, from language to physical expressions to social and cultural rituals, can be witnessed in all of its beauty across all 28 states of India. Variations in grief expressions can also be witnessed across the heterogeneity of the U.S.

The United States The Centers for Disease Control and Prevention (CDC) is one government entity with a motto: “Saving Lives Protecting People.” On their website, there is a section How Right Now and a subsection Explore Your Emotions. One emotion option listed is grief. Contained on this page is a defining of grief. For some, we know what we are feeling and yet do not have the language capacity do convey this in words that might be understood by others. As is sometimes the case with study participants who, when asked the extent to which grief interferes with their life, respond with “What is grief?” The CDC page also makes a psychosomatic connection between grief and other bodily experiences: appetite, mood, energy level, or sleep patterns (2023). The government website is communicating a normalizing and in some ways a homogenizing of experiences, and yet remains a helpful tool of support. The social impact of grief can be calculated by using a bereavement multiplier, a model that projects the number of people affected by a single loss (Department of International Economic and Social Affairs, 1983). One such study to utilize this model suggests for every COVID-19 related death in the United States, 8.86 people

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experience grief (Verdery et al., 2020). The same study also drew attention to prospective disparities by highlighting how loss disproportionately affects groups across racial, gender, and age lines. For Black Americans, the toll was higher with 9.18 people grieving for every one death. Other studies support the dispositional racial effect of grief (Kidman et al., 2021). Verdery and colleagues note that use of other computational methods, that take into consideration other relationships, would present an even graver picture of loss. This study was focused solely on people who experienced the death of a child, parent, grandparent, sibling, or spouse (Verdery et al., 2020). As we can see, the emotion of grief may be universal and yet its impact is quite particular. As was posited in the discussion of grief experienced in Japan and India, religion shapes and restricts how grief is experienced. Based on a survey of 35,000 Americans from 50 states, conducted by the Pew Research Center, nearly half of the population in the United States identify as Protestant – grouping together of three denominations: historically black, mainline, and evangelic (Religious Landscape Study, 2014). A common thread in instances where the loss is death, is there is no need to pray for the dead as their soul has already either gone to heaven or hell. The decision is made based on their life doings. Once life ends, the decision has already been made, thus praying is futile. I once heard a pastor at First Congregational Church in Guilford, Connecticut, describe death as a doorway rather than a wall. He said, and I’m paraphrasing and offering this retrospectively as I was 7 years old when I heard this, 1 day you too will walk through this door and be reunited with your loved ones. Grief in the United States, from a religious perspective, leans toward stoicism. The grief that continues to accompany COVID-19 losses offers a window into the collective experience of aging, disease, and mortality. Dementia grief is another window into this collective experience. We will expand on the concept of dementia grief, discuss its unique qualities, as well as become introduced to theoretical frameworks for understanding this area. First though, let’s move away from the lived experiences of grief and understand a bit about grief theories circulating in the literature.

Grief Theories in the Context of Dementia Health The concept of grief is understood to be ranging from “anticipatory” (Cheung et al., 2018; Rando, 2000) to “ambiguous” (Boss, 1999; Boss et al., 2003) to “chronic” (Rabins, 1984), and from “tragic” (Holley & Mast, 2009; Reed et  al., 2017) to “complicated” (Shear et al., 2005) to a formal diagnosis with “prolonged grief disorder” (Maciejewski et al., 2016, Prigerson et al., 2009 ICD-11, 2018). Applying a grief lens to the experience of dementia can be unified with a continuum of memory where there are three overlapping components of mind-body memory: cognitive, emotional, and physical. Each of these dynamic integrant has a corresponding type of grief. At one end of the dementia-grief continuum is cognitive changes.

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Ambiguous loss can offer a comforting and soft-landing space for grappling with the complexities of these losses. At the other end of the continuum is the physical ceasing of bodily functions – when the last breath is exhaled. Anticipatory grief may offer a lens through which to view this seemingly drawn-out process. In the middle, emotional or psychological death can be understood within the context of emotional memory. Disenfranchised grief theory lends a way to untangle and begin to integrate these types of losses. We will now delve deeper into the three types of grief theories, move into a discussion of prolonged grief disorder or complicated grief.

Anticipatory Grief Theory Anticipatory grief occurs as the person with dementia, family members, and caregivers prepare for the final death – gone and gone. Anticipatory grief therapy has been delivered to older adults at the end of life with promising results (Cheng et al., 2013). Previously, dementia was thought of as a mind imprisonment of sorts or “the long goodbye,” and yet this model is outdated as increasing evidence points to remaining strengths and capacities. Liew and colleagues talk about the “pre-death grief” involved in dementia (2018). With anticipatory grief, self and others anticipate future losses, most often in the face of life-limiting illnesses (Doka & Martin, 2010). From Freud’s perspective we grieve the loss of attachments. The process of mourning is a DGT of detachment. The hope of reattaching occurs through reunification. A universal response to loss unfolds in spiritual and religious texts and beliefs about reunification or when attempting to reunite with one who is deceased (Parkes et al., 2015). Our imaginations keep people alive. In many Eastern cultures, death is linked to love, and compassion to sadness. At the same time, Rabbi Margaret Holub cautions that anticipatory grief is not a preparatory event (2016). A more expansive exploration of impermanence will be presented when we consider mindfulness-­informed approaches to grief therapy.

Ambiguous Loss Theory Ambiguous loss theory offers a way to understand the incongruence between physical and cognitive health – here and gone. When loss is riddled with unknowns, the bodily mechanisms that create equilibrium are unduly taxed leading to extraordinary overload and systemic exhaustion. Boss asserts that “cognition is blocked by the ambiguity and lack of information, decisions are put on hold, and coping and grieving processes are frozen” (2006). When our ability to pass through grief phases, zones or stages is blocked, we remain in a reactive, repetitive, and reoffending state of trauma. In the literature, when a lens of grief or loss is applied to dementia and BPSD, the focus is on family members and caregivers. The person diagnosed with

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dementia is typically absent the narrative, and when present they are objectified. One type of ambiguous loss is “when a loved one is physically present, but psychologically absent,” such as is the common narrative with people are diagnosed with dementia (Boss, 2004). Grief in this type of loss “is frozen, life is put on hold, and people are traumatized” (Boss, 2004). Boss is referring to the grief, life, and traumatization of people adjacent to the one diagnosed. What about the processes of grief, life, and traumatization of people diagnosed with dementia? Where are the sources of validation for their ambiguous losses? People diagnosed with dementia are traumatized, possible retraumatized by a diagnoses, and then retraumatized a third time by the treatment methods currently in practice, and potentially even retraumatized a fourth time if a person is labeled as presenting BPSD. Antipsychotics are a line of treatment. And yet, Boss suggests, expressions of emotions should not be hampered by medications (2011). What happens when the “lost person” is the self? To my knowledge, there have been no studies that have applied ambiguous loss theory to therapeutic practices with people living with dementia, or diagnosed with BPSD. The theory of ambiguous loss is grounded in models of stress and resilience. It is worth noting that we will see a stress model arise again when we discuss existing dementia grief models. Adopting a stress-informed framework for understanding dementia allows space for exploring key components of ambiguous loss: closure, attachments, and identity. We will discuss these three areas separately and explore how each informs the other with clear overlap existing among these three components of overall health and wellbeing. Closure Boss suggests a tri-focus where there is an avoidance of closure, new attachments are able to occur, leading to new hopes. She likens this process to a Mobius strip, however I see it as more similar to a double-helix strand of DNA where the process is iterative. When the goal of closure is discouraged in therapy, the space for a new attachments’ blossoms. Each new attachment informs a type of hope. Each type of hope then informs the path for avoiding closure the next time resolution urges arise. A Mobius strip remains static. Mathematically, a Mobius strip has a single side and a single boundary. The acclimation process of becoming house mates with ambiguous loss has multiples sides with multiple boundaries. Put differently, multiple identities and attachments are informed and constrained by multiple social interactions and environments. Attachments Attachments informed by a theory of ambiguous loss, compared to Bowlby’s attachment theory, can be a source of resilience and also a hindrance to paradoxical comfort. In other words, a person psychologically present and physically absent may

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provide a great sense of attachment. Could it be that people diagnosed with dementia are much more resilient than we tend to want to accept? If we introduce the label of resilience into the mix of therapeutic methods with dementia, then the locus of control would change – returning some control to the person diagnosed. Identity Flexibility in identity construction flows into an open process of later life identity reconstruction, whereas adherence to absolute identity hinders the process of feeling comfort among ambiguous losses. Community is necessary for revisions, due to identity formation happening not in isolation, rather in relation to others. Identity formation is informed and constrained by community. Therefore, revision of identity is relational. Fostering and embracing a process of identity bendability is a necessary precursor for optimum health. Boss reminds us that “in peace and in wartime [people] use extreme measures to maintain identities. To remain the person they are used to being, they may kill, shun or simply ignore anyone who challenges their status quo. They act as if ‘the other’ is demonized” (2004). In the context of a person receiving a new diagnosis of dementia, perhaps the process of “othering” is being applied to the diagnosed self. Standing next to this diagnosed person is the former person clinging to their identities of mom, sister, friend, teacher, architect, or world adventurer. Is this vast space of paradoxes addressed in initial diagnosis? If yes, what does the process look like? Who gets to be a part of the conversation – who’s voices are valued greatest? In what ways could these conversations inform treatment methods? I have explored three key concepts in ambiguous loss theory and have situated the discussion within the context of dementia and more specifically BPSD. We can see where an avoidance of closure is necessary for maintaining a healthy balance among all involved participants. The process of attachments and reconstructed attachments are critical to achieving a state of thriving. Last, identity exploration, formation, and reconstruction must be fluid. Absolute identity affiliation is detrimental to healing and hope.

Disenfranchised Grief Theory Disenfranchised grief theory can be used to understand the significance of psychological or emotional losses. Doka emphasizes the important role “hidden” losses play in our grief processes. This type of grief occurs when losses are not recognized, validated, or socially sanctioned. These losses are experienced by the person with dementia, to the extent that others are not able to understand their needs. Most often in clinical practice, a lack of understanding needs is attributed to the presumed reduced verbal communication capabilities of the person diagnosed. For a person with dementia, psychological shifts may be experienced within the domains of

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identity, agency, roles, selfhood, and personhood. Increasingly, research is suggesting a preserving of these personal mechanisms (Francis et al., 2020). Therefore, we see a debunking of the previously held belief of dementia as the long goodbye. A person’s emotional memory gets engulfed by their cognitive deficits or diminishing mental capacity to the point of non-recognition. Put differently, while declarative memory seems to vanish, procedural memory remains in-tact (Francis et al., 2020). Application of disenfranchised grief therapy may be a way to safely integrate the past and present. As a theory, it may offer a way to untangle the intricacies of memory, by recognizing the presence of cognitive shifts when versions of one’s former self are compared to present self. Additionally, theoretically, it may offer a framework within which to understand and recognize the presence of emotional memory, particularly in the absence of cognitive memories.

Prolonged Grief Disorder or Complicated Grief Grieving beyond the “typical” period is not a recent phenomenon. In the United States, here is a documented history extending across most of the past 100  years (Lindemann, 1944). Although U.S. academic interest on bereavement began post-­ Cocoanut Grove Fire, we can see grief mentioned much earlier. From religious texts by Arjuna, Buddha, and Christ to art from sixth century B.C. artist known as Gela Painter to Kramskoi’s “Inconsolable Grief” to Story’s “Angel of Grief” sculpture. An international standard for what grief looks like when outside of the usual bereavement response period is codified in the ICD-11 Prolonged Grief Disorder and complicated grief as Persistent Complex Bereavement Disorder (PCBD; formerly complicated grief disorder) in the American Psychiatric Association (2013). Prevalence rates vary considerably from single digits (Prigerson et al., 2009) to 10 (Thiemann et  al., 2023; Lundorff et  al., 2017) and 13% (Bonanno & Malgaroli, 2019) to 49.5% (Baumann et al., 2022), depending upon what algorithmic diagnostic criterion is used. This disparate use of clinical terminology significantly clouds research and systemic reviews. As greater algorithmic alignment occurs, there can be expected to be less range. Considering Attachments Bowlby defined attachment as a “lasting psychological connectedness between human beings” (1969). Bowlby goes on to suggest that attachment development originates with a consistent other, typically the primary caregiver. The foundation for a sense of safety and security is laid and a prototype is formed against which all other relationships will be judged. Similarly, Erikson’s concept of basic trust (or mistrust), established in his first stage, informs future encounters (1963). As his theory of development suggests, the development of trust leads to establishing a sense of hope. In the absence of trust, fear arises. These early attachment experiences can have direct implications on later life grief and the process of integration.

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These effects can be further complicated by dementia where the attachment to the self is suspended between multiple disenfranchised grief episodes or stilted by interruptions in whole mind-body grief integration. O’Conner and colleagues suggest brain changes are more significant for people who develop prolonged grief disorder (PGD) compared with their non-complicated grief counterparts (2008). Presumedly, people living with dementia are already grappling with multiple losses by being in the process of “incorporating the present reality of the diagnosis into one’s sense of past and future” (Doka, 2014). Amidst this process of information and emotional integration, people are reminded of the social stigma of a diagnosis. In the words of Simos, “Past losses and separations have an impact on current losses and separations and attachments and all these factors bear on fear of future loss and separations and capacity to make future attachments” (1979). When confronted with a grief episode, neural pathways are reworked. Attachment networks change. The impacts of emotional and psychological losses, past and current, overlap with BPSD in the neuronal and structural changes in the brain. Could it be that disenfranchised grief episodes, ones that remain invalidated post-dementia diagnosis are attempting to be reconciled? In the mind-body landscape, valiant efforts are underway to honor past griefs and it very well could be that grief is presenting as what is labeled BPSD. Study findings seeking to generate linkages between attachment styles and complicated grief are inconsistent, mixed, and contradictory (Eisma et al., 2023; Russ et al., 2022; Huh et al., 2020; Shear et al., 2007). In part, this is the result of studies investigating process and outcome variables and presenting data without clearly delineating the study’s variables. As investigations on risk factors for complicated grief expand, so too should the function of complicated grief as a risk factor for other psychological and physical concerns. For the purpose of this section, we will focus on three areas: risk factors, processes, and mechanisms of change. Additionally, I will argue from a social justice aspect that applying a complicated grief lens to BPSD is necessary for recognizing the capability of people diagnosed with dementia to process their prior unresolved grief episodes. Knowing that “poor social support” is a modifiable social variable in “bereavement adaptation” therapeutic interventions might consider incorporating such a component as a protective element in dementia health (Burke et  al., 2010). Additionally, as mentioned above, we need to look bi-linearly at the role complicated grief plays in the development of other concerns. Research suggests “substance abuse, depression, anxiety and overall life disruption,” are predictable outcomes of complicated grief (Ott, 2003; Shear et al., 2011). As will be elaborated on below, in the section on process, rumination is both a risk and protective factor. Simply put “too little will prevent effective adjustment…too much will exacerbate distress” (Mikulincer & Shaver, 2013). People diagnosed with dementia should be screened for such episodes, with caution and compassion taken before pathologizing the behavior. One important factor in the development of complicated grief is the role of attachments. At all stages of our life, as a species, and particularly at times of need,

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we require the availability, sensitivity and responsiveness of attachments that meet these needs (Mikulincer & Shaver, 2013). When a person is committed to a residential memory center, who serves this role for them, as identified by them? If we adopt the angle that when a person moves into a memory center, their attachment figures are disrupted, then we can rely on Bowlby’s explanation of the process as moving from protest to despair to detachment and then reorganization (1980). These processes mirror scenes that unfold in people labeled as exhibiting BPSD. Put differently, when a biomedical model is used to describe and understand BPSD, with people being medicated, the process of integrating loss, reorganizing identity, and establishing new meanings is disrupted. This process is further hindered for some, with an absence of offering grief counseling to people diagnosed with dementia. Complicated grief is often rushed through or thought of as an episode that needs resolution, rather than an opportunity to expose underlying concerns, leading to an unfolding or retelling of a narrative in alternative, adaptive ways. Both BPSD and complicated grief share a key feature of rumination. From a maladaptive perspective, we can construct repetitive thought as depressive rumination. This includes a process that is solely focused on symptoms of distress, the events pertaining to the development of these symptoms and takes place in a repetitive and passive fashion (Stroeb et al., 2007; Nolen-Hoeksema et al., 1994). We can also flip this inside out and see how this process is adaptive. A process where the thought process is engaged in the stressors, evoking feelings and thinking about the impact of these stressors on current and future selves (Bower et al., 1998; Greenberg, 1995). The latter of these constructs lends support to the historical significance of “grief work models” (Bowlby, 1980). The hypothesized predeterminants of constructive or unconstructive consequences of complicated grief are content and rumination (Watkins, 2008). We can view rumination and content from two ends of two separate continuums: abstract to concrete, and positive to negative, respectively. According to control theory, “rumination is triggered by a discrepancy in goal progress” (Watkins & Moulds, 2013). Therefore, rumination serves the purpose of exposing unresolved issues (Martin & Tesser, 1996). In the same vain, it could be said that dementia exposes unresolved grief episodes and BPSD is a conduit in the struggle for recognition. Abstract rumination may function as a protective mechanism to think rather than act, thereby eliminating the possibility of humiliation or failure. A similar explanation could extend to the context of BPSD, where rumination is constructed as a form of nervous behavior. Abstract processing “involves representing the reasons why an action is performed or an event occurred, its meaning and implication, and elements that are common across multiple situations,”. When such processing occurs for people diagnosed with dementia, could it be that the diagnostic event triggered a recall of other related events (related by a strand of grief) “such that the individual is no longer focused on a discrete event [diagnosis] but rather on a number of related difficult events,” (Watkins & Teasdale, 2001)? According to Foa & Kozak, a greater amount of central executive functioning is necessary to process multiple memories (1986). With people diagnosed with dementia, it is assumed that there is atrophy in the dorsolateral prefrontal and orbitofrontal cortex, two main areas of executive

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functioning. In some instances, an fMRI scan indicating atrophy in these areas is evidence for a dementia diagnosis. Based on the results from a recent study of 29 bereaved subjects, words associated with the deceased activated these same brain regions at 14 months post-death (Schneck et al., 2017). Could it be that prolonged activation of these brain regions results in, or is later detected as atrophy? Several researchers indicate “difficulties in specific [memory] retrieval may arise as a result of depletion of cognitive capacity caused by intrusive cognitions that are associated with clinical disorders” (Kuyken & Brewin, 1995). Moreover, avoidant style grievers present increased activation of mental representations of the deceased and subsequently more frequent thoughts of loss (Schneck et al., 2017). Is there a greater proportion of people diagnosed with dementia who are also avoidant style grievers? Therapeutic techniques for ameliorating the debilitating effects of complicated grief are vast and varied. Some researchers suggest “direct concreteness training, structured exposure or problem solving” (Watkins & Moulds, 2013). Of the evidence-­based therapeutic practices for dementia, do any focus on reconstruction of self-identity post-diagnosis? Loss can shape and shatter one’s identity. Self-­ identity and goal setting are integral to the integrative process of metabolizing complicated grief (Maccallum & Bryant, 2010). In the context of dementia, it is vital for a diagnosis of grief to not become the assumed identity. Dementia is not who we are. Nor is grief. A mindfulness-based grief approach may lend a supportive hand. Mindfulness in the context of complicated grief could be understood as embracing, encouraging, and appreciating the particulars of unfolding processes (Gilbert, 2009). A method with mounting evidence benefitting people who feel “self-­criticism and shame” is compassion-focused therapy where people “struggle to feel [assured] or safe” (Gilbert, 2009). What is recovery in dementia? What measures might indicate success? Should process or outcome be emphasized? We have explored several areas of complicated grief research and attempted to draw parallels between complicated grief and dementia. Is there a link between complicated grief and dementia suggestive of preventative therapeutic measures? In a just society, we must recognize the capability of people diagnosed with dementia to process their prior unresolved grief episodes and develop adequate therapeutic techniques to support in these processes of recovery. Typically, discussion of complicated grief, when in the context of dementia rarely, if ever, concern the person diagnosed with dementia and instead focus on the needs of caregivers. As we explored in the previous chapter, diagnosis dictates a rapid transitional process from my grief (person with dementia), to our grief (person and caregiver), with most of the focus on your grief (caregiver). It is important that we continue to question, “Where did my grief go?” As clinicians, we can provide the greatest form of social justice by searching beyond the symptomatology of dementia, recognize the person as a capable person, and see BPSD as a struggle for recognition. When we fail to accept BPSD as a struggle for recognition, we dismiss the underlying grief processes, we reduce a person to a one-dimensional object, shaped by, understood and informed by diagnostic criterion. Often what is diagnosed as multimorbidity of dementia may in fact be complicated grief staring us in the face.

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For decades now, we have turned our backs on the possible efficaciousness of a therapeutic approach based in grief treatments for addressing what is often cited as the most troubling sequelae of dementia – BPSD. Could it be that BPSD is not shaping a person’s response to a diagnosis of dementia, yet are products of the diagnosis? We can reflect on the contributions of Chaim Shatan in understanding traumatic experiences in what he called “post-Vietnam Syndrome” to reconceptualize BPSD from problematic behavior and begin seeing the behavior as a struggle for recognition (1972). We discussed this previously in Chap. 2.

Dementia Grief It has been repeatedly noted in the literature that the defining feature distinguishing dementia grief from other types of grief is in the relationship between the person living with dementia symptoms and others (Blandin & Pepin, 2017; Noyes et al., 2010; Santulli & Blandin, 2015). Unlike other types of illness, cancer for example, the grieving process is done in community and all involved parties have opportunities to share their feelings (Lindauer & Harvath, 2014). However, one of the ways relationships change with a dementia diagnosis is in communication styles. With others perceiving changes in the person living with dementia being unable to communicate, then the grieving process becomes a one-way road: caregiver grief. A second way the relationship changes is in perceived insight. It’s also worth noting that another component distinct to dementia grief is the presumed irreversibility of the disease affecting the person who is also experiencing dementia symptoms (Lindauer & Harvath, 2014). The body of literature on grief of people living with dementia is quite small. Case studies of people living with dementia symptoms being offered support to process their own grief are even smaller (Rentz et  al., 2005). We will return to this important area of inquiry in future chapters. For now, with a little understanding of grief theories, let’s understand a bit about grief therapy as applied to dementia health. We will then turn the conversation toward understanding the background on five theoretical models of dementia grief, the structure of the model and any application of the model. Grief Therapy in Dementia Health Worden outlines nine therapeutic procedures: rule out physical disease, contractual agreement, reviewing of memories of deceased, assess struggle with specific mourning tasks, presence or absence of affect stimulated by memories, explore and defuse linking objects, acknowledge finality of loss, create life without deceased, improve social relationships, and fantasies wrapped around idea of ending grieving period. In the context of meeting the needs of people living with dementia symptoms, I will focus on three: reviewing of memories of deceased, assess struggle with specific mourning tasks, and explore and defuse linking objects.

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Reviewing Memories Worden highlights the importance of grounding grief work on a foundation of positive memories. With people living with dementia symptoms, engaging in a process of remembering their previous selves and what they liked and the types of activities they enjoyed may support participants who are resistant to experiencing negative feelings. A balance of emotions, can be achieved by utilizing techniques discussed in Chap. 4: “What do you miss?” or “What don’t you miss?” or perhaps even in what ways do you feel betrayed by your former self? In the case of multiple losses, as is often the case with people living with dementia symptoms, it is important to unfold each loss separately – beginning with the loss that is least complicated. Struggles with Mourning Tasks As performance mastery develops, from successfully navigating the complexity of each loss, a person can identify the specific web of mourning tasks within which they have become entangled. Let’s explore each of the four tasks of mourning within the context of people living with dementia symptoms. With a keen eye toward attachment styles, a person may be able to see what is hindering their acceptance of the finality of the loss (Task I). I ponder variations of Task I as applied to people living with dementia symptoms. While attachment styles can be informative indeed, perhaps a recognition of finality can be reframed using a language of mindfulness where the participant accepts the present moment. If we stay within this framework, using language based in yogic science (as we will discuss in future chapters), then processing the pain of grief (Task II) is informed by present moment awareness. For PWD who are struggling to find meaning, externally or internally (Task III), they may be supported in a deep exploration of their sense of self. If PWD who are struggling with how to memorialize their previous selves and create a new life (Task IV) then it may be as simple as giving the person permission to live, or as complex as recognizing one’s own set of capabilities and flourishing (Ryan et al., 2013). In the absence of a recognition of capabilities, then wellness and social justice are absent as well (Nussbaum, 2006). In these conditions, then not only are people unwell, communities are too. Linking Objects A third therapeutic procedure is exploring and defusing linking objects. It is suggested that a healthy trajectory is moving from objects to memories (Field et al., 1999). Could it be that this step in the grief procedure is magnified in people living with dementia symptoms due to a shifting of neural networks? Magnification leads to intensified anxiety, which can be traced to the anxiety experienced when a linking object is lost (Volkan, 1972). Some research suggests that holding linking objects is

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quite beneficial for people living with dementia symptoms (D’Andrea et al., 2022). There is increased interest in using this technique as an intervention aimed at increasing quality of life, overall wellbeing and shifting perspectives on living with dementia symptoms. We’ve moved from an exploration of grief theories, to understanding a bird’s eye view of how dementia health might look when viewed through the lens of grief-­ based therapies. Now we will extend our inquiry of how grief and dementia overlap by gaining a historical perspective on five theoretical models of dementia grief, the structure of the model and any application of the model. We will conclude by taking a moment to utilize a grief lens to view BPSD.

Five Theoretical Models of Dementia Grief The body of literature on caregiver experience is massive in quantity. It has only been more recently that it has been suggested that the caregiver relationship in the context of a person living with dementia holds unique qualities (Lindauer & Harvath, 2014). It has been even more recently that the quality of grief entered the picture (Champlin, 2020; Garand et al., 2012; Schulz et al., 2006; Adams & Sanders, 2004). Throughout the past two decades, five theoretical models of dementia grief have emerged (Rubin et al., 2022; Blandin & Pepin, 2017; Noyes et al., 2010; Silverberg, 2007; Marwit & Meuser, 2002). Each of these models will be laid out in order of development (from most recent to longest ago). We will explore the particulars of each model, along with any corresponding research conducted on the application of the model.

Two-Track Model of Dementia Grief Most recently, the Two-Track Model of Dementia Grief (TTM-DG) was introduced into the literature (Rubin et al., 2022). We’ll return to the particulars of this model in a moment, first though we need to understand the model’s origins. The current model is structured after a previous development for understanding bereavement by Rubin, the Two-Track Model of Bereavement (Rubin et al., 1981, 1999, 2012). He suggests in a loss episode there are two tracks at play: functioning and relationships (1999). Rubin posits the aim of the model is to dually consider: (1) a person’s abilities to engage in day-to-day activities by offering a range of functioning qualities (adaptive or maladaptive) and (2) the interpersonal qualities of the relationship to the one who is deceased. Interpersonal qualities such as degree of love for the deceased person or attachment style. Further, this model suggests that interpersonal qualities, such as reflections and memories of the deceased, can be categorized as disorganized or organized. Overall, the thought with this model is that systemic

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homeostasis is set off balance with the occurrence of a loss episode, functioning is disrupted by detachment, and when attachment is reorganized then homeostasis returns. Structure Rubin and colleagues introduced the Two-Track Model of Dementia Grief (TTM-DG) where the two tracks are biopsychosocial functioning and ongoing emotional attachment to the person living with dementia symptoms (2021). This model is focused on the changing relationship and lived experiences of the spouse of someone living with dementia symptoms. Track I considers changes in sexual encounters, appetite, sleep hygiene, anxiety, depression, friends, social supports, among others. Track II is concerned with the narrative of illness and death: memories, thoughts, and feelings. In one study, researchers recruited 122 community dwelling, heterosexual, Jewish older adults who live in Israel (Manevich et  al., 2023). Participants were separated into four groups: control group; mild to moderate cognitive impairment; advanced cognitive impairment; and widows and widowers. Among these four groups, study findings suggest a relationship between functionality (Track I) and relationship satisfaction (Track II) for the second group. For this group, the greater the degree of dysfunction then the less relationship satisfaction. The third group also experienced less relationship satisfaction as compared with the first and forth groups, although researchers reported not as diminished as the second group. The third group reported highest levels of biopsychosocial dysfunction, which then dipped in the fourth group although did not return to levels reported in the first group. The authors suggest this finding lends to the body of research on the relationship between the progressive nature of illness relationship satisfaction. Application The role of caregiving can be assumed by a variety of people, sometimes with a prior history of relationship to the person living with dementia symptoms and other times without. Recently, researchers sought out to apply the TTM-DG, specifically to spouses of people living with dementia symptoms, for the purpose of attempting to identify different characteristics that may be present within a resilient and risk groups of caregivers (Manevich et al., 2023). This study used self-report questionnaires with two groups: 62 people whose spouses met diagnostic criteria for mild to moderate cognitive-impairment and advanced cognitive-impairment and 32 people whose spouses were living without cognitive or functional impairment. Women comprised 62% of study participants in both groups. Both groups were highly educated, socioeconomically privileged, identified as Jewish, living in Israel and in heterosexual relationships.

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One of the findings was that study participants who reported maladaptive grief reactions, considered to be in the risk group of caregivers, also reported insecure attachments. This supports other research efforts on the relationship between attachment patterns and pre-death grief. It seemed that for the study participants classified as the resilient group, several variables mediated pre death grief: social support, sense of coherence, and physical health. It’s worth noting here that a sense of coherence (SOC) – a construct developed by Aaron Antonovsky – has been studied extensively and found to be an important health benefiting factor (Potier et al., 2018). As it relates to dementia grief therapy, SOC incorporates an internal locus of control (Rotter, 1954). We will return to the significance of this in Chap. 6.

Blandin and Pepin Unlike most researchers who frame grief as a symptom or product of dementia caregiving, Blandin and Pepin focus on the process of grief. They suggest a cyclical iterative process among three psychological states: separation, liminality, and reemergence. Three dynamic mechanisms either stall movement through cycles or serve as a driving force: acknowledging compounded serial losses, tolerating difficult feelings and adapting to new circumstances (2017). In future chapters, we will return to a discussion of the authors’ contributions when we discuss attachment dimensions and consider how different styles might pave the way or create road blockades to dynamic mechanisms. Structure The authors suggest there are three hallmark features or mechanisms of dementia grief, as noted previously. First, compounded losses occur when a person’s independence with completion of activities of daily living diminish (dressing, bath, driving, etc.) (Yates et al., 2019; Mace & Rabins, 2006; Mittelman, Epstein, & Pierzchala, 2003; Santulli, 2011; Reifel & Larson, 1990). When an idea of who a person was at one time, remains solidified in the mind of others, then the grieving of losses is stalled. Second, tolerating difficult feelings or the ambiguous nature of losses is an important mechanism. Some believe the grieving processes with dementia is stalled until death (Boss, 1999; Large & Slinger, 2013). Because the trajectory of diseases with dementia symptoms is unpredictable, largely due to this being a new area of inquiry and simply because of human nature, the ambiguity of losses experienced is widespread. The third mechanism in the process of adaptation to new versions of the self is not a common narrative (Norberg, 2019). Rather the identity of the self, memories, and abilities are viewed as becoming faint outlines of what they once were (Chan et al., 2013, 2017; Madsen & Birkelund, 2013). These three mechanisms can offer guidance in altering patterns of woven and rewoven losses, by creating an end. Rather than a continual beginning and middle repetitive process that is absent an end, this model highlights the process of grief

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and normalizes it. Unlike other models that present grief in the picture of dementia as a symptom of the disease (Blandin & Pepin, 2017). We have just learned that in the process of separation then loss acknowledgement can support movement into occupying the in-between space where difficult feelings can be felt so that adaptations in identity can occur and result in a re-emergence of the self. Application To my knowledge, there are two separate studies that utilized the dementia grief model created by Blandin and Pepin. These studies utilized a therapy model of cognitive behavioral therapy (CBT) where the sessions’ focus was on exploring grief areas (Meichsner & Wilz, 2018; Meichsner et al., 2019). Both studies were comprised of caregivers in Germany. Meichsner & Wilz’s intervention of 12 therapy sessions, spanned 6 months and then they also followed up 6 months later. In both studies, therapy sessions were focused on the three areas initially proposed by Blandin & Pepin: acknowledging compounded serial losses, tolerating difficult feelings and adapting to new circumstances (2017). In both studies, caregivers reported the process of grief felt supported, and also gained skills and confidence to navigate the grief process. Further, in Meichsner & Wilz study, for caregivers with people living at home, they reported a decrease in dementia grief severity following the intervention.

Dementia Grief-Stress Model Noyes and colleagues, relying on a stress-process model of caregiving (Pearlin, et al., 1990; Hebert and Schulz, 2006), contribute a grief-informed stress model of caregiving specific to the context of dementia (2010). In particular, authors note that the types of losses specific to caregiving in the context of dementia is distinct and different from other types of caregiving. Structure The model’s focus is on three domains: “1) background and context; 2) primary stressors; and 3) outcomes associated with loss,” and the authors’ argue that grief or loss effects the ways stress is produced in these aggregates. The second domain is the predominate area of deviation from other stress-process models. Two different types of losses are identified. First, alterations in mutual supports, intimacy patterns change, and alterations in communications. Second, what the authors term “role overload” (Noyes et al., 2010). This occurs when the caregiver notices changes in values of responsibilities and deems these responsibilities as detracting from other activities (e.g., exercising, socializing with friends, listening to music, painting, etc.).

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Application In a study of 52 caregivers recruited from the Association of Relatives of Patients with Alzheimer’s Disease, in the city of Granada, Spain, researchers sought to measure changes in seven areas: caregiver grief, caregiver overload, resilience, acceptance and action, positive aspects of caregiving, post-traumatic growth, and perceived health (Bravo-Benítez et al., 2021). Participants were randomly assigned to intervention group (ten, 90-minute sessions, once a week, over the course of 2.5 months) or no intervention. Two of the study findings were changes in caregiver grief and caregiver overload. Caregiver grief, as expressed by negative emotions resulting from a change in the relationship, decreased in the group assigned to the intervention. For the control group, manifestations of grief emotions increased. A second change was witnessed in caregiver overload, with a decrease in the intervention group, whereas in the control group there was an increase in caregiver overload. Although this study was not entirely and wholly based on the Dementia-Grief Stress Model, the two primary stressor adaptions specific to the model, promulgated by Noyes et al., were incorporated into the study (2010). These findings highlight the importance of developing grief-based interventions within the context of dementia health.

3-A Model of Dementia Grief Silverberg, a clinical social worker and previously an adult child caregiver of her father, recognized an incomplete picture with the grief process specific to dementia caregivers. She sought out to create a model that assists with the process of adaptation when also living with the grief of dementia caregiving (Silverberg, 2006). Structure Silverberg offers a three-pronged intervention which includes acknowledging losses, assessing coping style, and assisting symptoms of grief management. In terms of acknowledging losses, she borrows three dimensions from Dempsey & Baago: loss of the person inflicted, loss of personal identity, and symbolic loss (1998). Mixed in with the process of acknowledgment, for Silverberg, is also the type of loss experienced: anticipatory, ambiguous, disenfranchised or some other type (as outlined earlier in this chapter). The second prong in her model is assessing the style of grieving. For some, she suggests, adopting Worden’s tasks of grief are appropriate (such as the reality of the loss, experiencing the pain of grief, and so on; 1991), while for others the dual-process model may be more helpful (Stroebe & Schut, 1999). As we know, everyone’s grief is unique. Each person must grieve in a way that allows space for internal systemic balance to flourish and blossom. The third prong of this approach is focused on assisting with what is often termed symptom management. Although this term is more often applied to people living with

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dementia symptoms, here, the author is suggesting for the caregiver to find assistance with the grief process. For example, caregivers can ensure a balance between loss-oriented stressors and restoration-oriented stressors by ensuring proper supports throughout the disease progression process. Application To my knowledge, to date, there are not any studies that have tested the reliability or validity of the 3A model.

Stage Sensitive Model of Dementia Grief Meuser and Marwit, developers of this model, ground their theoretical framework in the literature of anticipatory grief. They claim that there is a hole in the literature in that anticipatory grief is predicated on a process of illness resulting in death. Additionally, the journey of anticipatory grief, allows for the sharing and mutual supports to be offered between both parties (people dying and people ancillary to people dying) along the journey, grief can be shared and mutual supports can be offered. Yet, the authors claim, this is not so with caregivers of people living with dementia symptoms. Thus, the process of grief is hindered due to the absence of some of the aforementioned key features. Therefore, Meuser and Marwit set out to construct a stage-sensitive model of grief, for the purpose of developing a method for fully and accurately measuring dementia grief. Although they recognize a gap in the literature, by mentioning the grief of people with AD (2001). They are clear their instrument is designed specifically to measure caregiver grief. And yet, it is worth noting that they are the only ones to specifically mention individuals living with dementia symptoms. Structure Meuser and Marwit suggest caregiver grief intensity corresponds with the stage of dementia severity (2001). They recruited 121 caregivers from St. Louis Chapter of the Alzheimer’s Association, the Memory and Aging Project (MAP; n  =  35) at Washington University’s School of Medicine as well as word of mouth (n = 52). There was a study completion rate of 71.9% after initial recruiting efforts. The study participants were comprised of two different types of caregivers, both with a prior relationship history to the person living with dementia symptoms: spouses and adult children. Researchers concluded that not only is there grief differentiation in the process dependent upon caregiver relationship, also there is a relationship between grief and stage of dementia progression. Study authors noted emotion expression variation of grief based on caregiver type and stage. For adult-child, anger and frustration are expressed at highest degree

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during moderate stage, with sadness being revealed in the sever stage. Grief presents in a curvilinear design from mild to severe. For spouses, sadness is present in mild and moderate stages and transforms to anger in the severe stage of disease progression, with grief presenting linearly. Application Although the Marwit-Meuser Caregiver Grief Inventory (MM-CGI), a valid and reliable psychometric measure of caregiver loss dimensions and pre-death grief is widely studied, there has been considerably less applicability in the field of dementia health. The construct consists of three scales: Personal-Sacrifice Burden; Heartfelt Sadness, Longing, and Worry; and Felt Isolation (Marwit & Meuser, 2002). Development of appropriate assessments and interventions continues to be promising as MM-CGI produces reliability and validity with groups of caregivers across the globe. Chan and colleagues produced validation of a Cantonese-Chinese version of MM-CGI (2017). Meanwhile, Liew and colleagues sought to develop internal-consistency reliability, test-retest reliability, known-group validity, and construct validity of a Mandarin-Chinese version of MM-CGI (2018). Measurement equivalents with both constructs are equal to English versions.

Dementia Grief Models Summary Throughout the past two decades, five theoretical models of dementia grief have emerged (Rubin et al., 2019; Blandin & Pepin, 2017; Noyes et al., 2010; Meuser & Marwit, 2001). We explored the background on each of these models, the structure of each model, and discussed the application of the model to clinical practice, including in our discussion studies that used the model or components promoted in the model. Now let’s understand a bit about BPSD from the perspective of grief. As is evident, from the above overview of dementia grief models, all models omit even a modicum of grief as experienced and expressed by the person living with dementia symptoms. It is socially unjust to disregard the changing domains of role identity for people living with dementia symptoms (Cohen-Mansfield et  al., 2000). Further to focus instead on the “significant emotional, mental, psychosocial and physical consequences” the diagnosis has on others’ wellbeing objectifies the person living with dementia (Frank, 2008). This is not to suggest that caregiver grief is not an important area of investigation, rather we have an incomplete picture of dementia grief. Any therapeutic model that does not have at the center the person living with what is presumed to be an irreversible disease, at the center of care practices has the potential to undermine the personhood and preserved capacities of the person.

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Validating the grief experiences of others while neglecting the amalgamation of losses of the person diagnosed, renders an incomplete picture of the lived dementia grief experience. The person diagnosed should not be objectified by omission, non-­ recognition, and invalidating of their grief (Large & Slinger, 2015). Such a practice may magnify their already unacknowledged griefs. Let’s start listening to the potential grief experiences of people living with dementia symptoms (Rentz et al., 2005). We all have so much to learn.

Viewing BPSD Through a Grief Lens Some therapeutic practices emphasize increasing quality of life, psychosocial interventions, or psychoeducational interventions. Psychosocial interventions are targeted at individuals diagnosed with dementia and typically implemented to reduce BPSD. Whereas psychosocial interventions are aimed at educating family members and healthcare professionals on techniques for minimizing BPSD (i.e., ruminating, pacing, tapping, agitation, delusions, or hallucinations, to name a few). Caregiver directed support services include formal and informal, falling into one of two categories: respite care or psychosocial interventions. Respite care is designed to allow primary caregivers temporary relief from daily duties. Psychosocial interventions encompass a broad range of interventions such as counseling, supportive therapy, and behavioral interventions. A realm of human potential exists beyond quality of life (Quality of Life in Late-Stage Dementia (QUALID, Weiner et al., 2000). Quality of life instruments that emphasize function over capabilities fail to measure important domains of agency and identity, rendering an incomplete picture of human flourishing. The proposed model of psychotherapy, that we will discuss at length in Chap. 6, offers an opportunity for people to try on different attachment styles. For example, the relationship orientation of collaborators can offer a safe space where secure attachment behaviors are modeled and emulated. One benefit of appropriate modeling is the creation of new neural networks that prime the parasympathetic nervous system, rather than activate the sympathetic nervous system. The latter of these two systems is in operation in ambivalent and insecure attachment relationships. Understanding the complexities of grief and BPSD as parallel processes, may hold untangling power. Further, grief and BPSD can be conceptualized as dynamic feedback loops.

Chapter Summary The field of dementia health includes consideration of a history of trauma. Grief reactions are one way of framing the lived experiences with loss episodes. We discussed several grief reactions and followed this with a rich discussion on

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understanding the mourning process, with a clearly defined past, present, and future. The structure can be seen as the individual or micro level of processing grief as well as the macro level of grief therapy development. We then borrowed from Worden’s mediators of mourning to understand variations in the lived experience with dementia. Within this context we can rely on a system’s approach to mourning by considering historical losses, role adjustments, and physical emotional losses. I offered very briefly a model of how the process of dementia mourning might unfold. With this knowledge, people living with dementia symptoms may feel more supported. It’s also important to only very loosely hold these ideas of mourning as it really is best practice to meet a person where they are at that moment and begin fresh. Before moving into a conversation of grief theories in the context of dementia health, we briefly looked at cross-cultural representations of grief in Japan, India, and the U.S. Following our overview of grief theories, we moved into a detailed explanation of five dementia grief models. We conclude this chapter by understanding BPSD from a grief lens. This sets the groundwork for the next chapter where we will understand more about dementia globally.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Discuss differences with grief experiences based on attachment styles. 2. Explain the effects of trauma on the grieving process. 3. Name two benefits of adopting a systems approach to frame dementia grief.

Further Inquiry How would a therapeutic model look that validates the grief of people living with dementia symptoms? What are lessons learned from COVID-19 that can be applied to understanding the social impacts of people living with dementia symptoms? Is validation connected with modeling a secure attachment style?

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Madsen, R., & Birkelund, R. (2013). ‘The path through the unknown’: The experience of being a relative of a dementia-suffering spouse or parent. Journal of Clinical Nursing, 22(21-22), 3024–3031. Magai, C., & Cohen, C. (1998). Attachment style and emotion regulation in dementia patients and their relation to caregiver burden. The Journals of Gerontology Series B Psychological Sciences and Social Sciences, 53(3), 147–154. https://doi.org/10.1093/geronb/53B.3.P147 Manevich, A., Rubin, S. S., Katz, M., Ben-Hayun, R., & Aharon-Peretz, J. (2023). The two-track model of dementia grief and spousal response to illness and death. Death Studies, 47(5), 592–599. https://doi.org/10.1080/07481187.2022.2113479 Martin, L. L., & Tesser, A. (1996). Some ruminative thoughts. In R. S. Wyer Jr. (Ed.), Ruminative thoughts (pp. 1–47). Hillsdale, NJ: Erlbaum. Marwit, S. J., & Meuser, T. M. (2002). Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer’s disease. The Gerontologist, 42(6), 751–765. Matsuda, Y., Takebayashi, Y., Nakajima, S., & Ito, M. (2021). Managing grief of bereaved families during the COVID-19 pandemic in Japan. Frontiers in Psychiatry, 12, 637237. Menakem, R. (2017). My grandmother’s hands. Central Recovery Press. Meichsner, F., & Wilz, G. (2018). Dementia caregivers’ coping with pre-death grief: Effects of a CBT-based intervention. Aging & Mental Health, 22(2), 218–225. Meichsner, F., Köhler, S., & Wilz, G. (2019). Moving through predeath grief: Psychological support for family caregivers of people with dementia. Dementia, 18(7–8), 2474–2493. Mera, H. (2022). Japanese government steps up efforts to care for women who miscarry. Kyodo News. Available from: https://english.kyodonews.net/news/2022/08/1ce73925a69e-­focus-­ japanese-­government-­steps-­up-­efforts-­to-­care-­for-­women-­who-­miscarry.html Mesquita, B. (2022). Between us: How cultures create emotions national geographic books. Meuser, T. M., & Marwit, S. J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41(5), 658–670. https://doi.org/10.1093/geront/41.5.658 Mikulincer, M., & Shaver, P. R. (2013). Attachment insecurities and disordered patterns of grief. In M. Stroebe, H. Schut, & J. van den Bout (Eds.), Complicated grief: Scientific foundations for health care professionals (pp. 190–203). Mittelman, M. S., Epstein, C., & Pierzchala, A. (2003). Counseling the Alzheimer’s caregiver: A resource for health care professionals (p. 346). American Medical Association. Morgan, J. A., Corrigan, F., & Baune, B. T. (2015). Effects of physical exercise on central nervous system functions: A review of brain region specific adaptations. Journal of Molecular Psychiatry, 3(1), 3. https://doi.org/10.1186/s40303-­015-­0010-­8 Moules, N. J., Simonson, K., Prins, M., Angus, P., & Bell, J. M. (2004). Making room for grief: Walking backwards and living forward. Nursing Inquiry, 11(2), 99–107. Mukadam, N., & Livingston, G. (2012). Reducing the stigma associated with dementia: Approaches and goals. Aging Health, 8(4), 377–386. Nadeau, J.  W. (2008). Meaning-making in bereaved families: Assessment, intervention, and future research. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (pp.  511–530). American Psychological Association. Nair, V. S., & Banerjee, D. (2020). The heterogeneity of grief in India during coronavirus disease 2019 (COVID-19) and the national lockdown. Asian Journal of Psychiatry, 54, 102249. National Academies of Sciences, Engineering, and Medicine. (2020). Social isolation and loneliness in older adults: Opportunities for the health care system. The National Academies Press. https://doi.org/10.17226/25663 Nolen-Hoeksema, S., McBride, A., & Larson, J. (1994). Ruminative coping with depressed mood following loss. Journal of Personality and Social Psychology, 67, 92–104. Norberg, A. (2019). Sense of self among persons with advanced dementia. In T. Wisniewski (Ed.), Alzheimer’s disease. Codon Publications. Available from: https://www.ncbi.nlm.nih.gov/ books/NBK552152/

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Chapter 4

Demystifying the Dementia Divide

Key Points • Is there universality in lived experiences with dementia grief symptoms? • Importance of knowing disease etiology as one component of dementia health. • Acknowledging layer of death in dementia symptoms and lived experiences. We will explore the literature on therapeutic approaches for working with people living with dementia symptoms, as well as existing interventions for BPSD. Both of these areas will be explored within the context of a global community, by grounding our discussion in WHO’s Global Action Plan on Dementia (GAP). We will place the concepts of dementia – first, as a medical diagnosis and second, as the lived experiences with dementia symptoms – on a global stage by exploring GAP’s seven action steps within the context of three counties: Japan, India, and the United States. A comprehensive review of dementia will prepare us for moving into what we can consider as a pre-diagnosis phase: testing, screening, and assessment. We will pay particular attention to cultural relevance and appropriateness of cognitive assessments. We will then move our discussion to the post-diagnosis process by discussing death, dementia, loss, and life. We will gain and strengthen our understanding of several therapeutic approaches that can be adopted to support the dementia grief integration process. By exploring the historical roots of attachment theory and the roles the self-other dyad plays in living with dementia symptoms, we will be prepared to conceptualize the process of change from micro to macro levels. We will conclude this chapter by considering necessary and important areas of dementia grief work.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_4

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Background The World Health Assembly, the decision-making body of WHO, convened in May 2017, and WHO adopted a plan to create a “world in which dementia is prevented and people with dementia and their carers live well and receive the care and support they need to fulfill their potential with dignity, respect, autonomy and equality” (WHO, 2017). GAP states that specific goals or actions will be accomplished between the years 2017 and 2025, with a specified percentage of member states meeting these goals. The framework and development of this timeline builds on the previous work done in 2012, as well as knowledge gained from consultation with leading organizations (Rees, 2017; WHO, 2012). GAP is highly ambitious and sometimes unrealistic when we acknowledge access to resources varies vastly across the globe. In May 2023, at the G7 health meeting in Nagasaki, Japan, Japan’s leaders indicated that changes in three areas would help improve outcomes: increase funding for research, improve access to care, and boost international collaboration. As we will see in the below section, from the beginning, Japan has emerged as a leader on meeting the goals outlined in GAP. With a nearing deadline on the current plan, leadership at Alzheimer’s Disease International (ADI) is urging WHO to offer a 4-year extension. We will discuss seven key areas of focus laid out in GAP: dementia as a public health priority; awareness and friendliness; risk reduction; diagnosis, treatment, care, and support; support for carers; information systems for dementia; and research and innovation. GAP has stated goals for each of these action areas. For example, the first stated goal is for countries to have a dementia plan in place. Doing so communicates, from the specific nation to the world, that they believe dementia is a public health priority. Within the first year, one new plan was created (ADI, 2018). To place this in context, there are a total of 194 members who signed on in 2017. According to From Plan to Impact VI, a report produced by ADI, one-fifth (39 members) have implemented a national dementia plan (2023). Further, an additional 22 countries and territories are in the process of either developing a dementia plan or incorporating dementia within a wider national plan for non-communicable ­diseases. Overall, GAP emphasizes the need to come from a rights-based perspective, considering choice, autonomy, and self-determination (Cahill, 2018). Policy development informed by sincere intentions can offer one narrative. While implementation and evaluation can sometimes yield an entirely different narrative. We will now turn to exploring the current climate of these seven action areas in three different countries: Japan, India, and the United States.

Japan Geographically, Japan’s land mass is 364,500 km2. I’ve heard this equated to roughly the size of Montana where people are spread out across the surface of the land. At the time of this writing, the population, according to World Population Review is

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123,090,548. As spread out as people are, there is a high population density in Tokyo, with 29% of the country’s total population residing in Tokyo. Tokyo is the capital with a population of 37 million people and approximately 14,746 persons per square kilometer. To put this into perspective, World Population Review estimates density of all of Montana at about two people per square kilometer. Nearly 27% of Japan is comprised of residents who are ages 65 years and older, making Japan the oldest country on Earth. The median age of the population is 49. The government is considered to be structured in a parliamentary constitutional monarchy fashion. There are nine regions throughout the country and within these there are 47 smaller subregions or prefectures. The nine regions are named as follows: Hokkaido, Tohoku, Kanto, Chubu, Kinki/Kansai, Chugoku, Shikoku, Kyushu, and Okinawa. The prefectures are numbered north to south, beginning at one. Tokyo is located within the Kanto region and, according to the official website of the European Commission and the Japanese Government, Tokyo is considered the engine of Japan, with its prolific marketplaces of ideas and products (2023). Within each prefecture there are municipalities that govern local duties and hold regional responsibilities. These municipalities are comprised of cities, towns, and villages. According to Tokyo Metropolitan Government, there are also wards, cooperative, and public property districts designed to meet the specific needs of an area (2018). For example, there are 23 wards within Tokyo. It is important to take into consideration that while GAP was put in place, with goals to achieve specific actions between 2017 and 2025, the launching space for Japan was much different than other countries. For the last two decades, it has been apparent to Japan’s government as well as citizens, that dementia health is an area on which to strategize. In part, this has been fueled by an awareness that the population of the country is largely comprised of the oldest people in the world. In other words, the greatest concentration of people ages 80 and greater reside in Japan. According to the Ministry of Internal Affairs and Communications, 10.1% of the population are ages 80 or greater. Based on data collected in the Provisional Country Profile of Japan, from 2017, 33% of the population is age 60 or greater. As we will see in the below sections, innovative efforts have been ongoing for years.

Dementia as a Public Health Priority As was mentioned above, the past two decades have been a time of continued dementia policy prioritization, along with the adoption of a public health paradigm to dementia health. Efforts have ranged from destigmatizing diagnosis to diminishing the barriers around living with dementia symptoms to promoting peace of mind for all who exist within the dementia community. Japan has long set the stage for being a leader in the field of dementia health. The Dementia Basic Act is intended to take effect in mid to late 2024, with aims of being a fully inclusive society. We will learn in the summary section below, Japan is on track for moving in the direction of standards of highest inclusivity. According to DY Suharya, regional director of ADI for the Asia Pacific region, “Involving

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people living with dementia and their carers in high-level decision making can also lead to the creation of policies that are more relevant, effective and sustainable. Their direct involvement not only ensures that their needs are addressed but also promotes a sense of ownership and empowerment within the dementia community” (ADI, 2023). Is it possible for a day to arrive when living with dementia symptoms is considerably less fearful than it is currently?

Awareness and Friendliness As was mentioned in the previous section, Japan has been engaged in dementia friendliness and awareness efforts for some time. At the turn of the twenty-first century, a conversation began on the terminology used to describe people living with dementia symptoms. The term long used was chiho, roughly translating as idiotic and silly. In 2004, the Ministry of Health, Labour and Welfare (MHLW) created a committee to investigate the use of the word and identified three problems with the word: “it is a derogative term that causes feelings of contempt; it does not accurately portray the state of the person being described; and that it obstructs early detection and early diagnosis” (Japan Health Policy Now). Based on research and public opinion surveys, there was a recommendation to only adopt a term that is reflective of living with a cognitive disorder, and so ninchisho, was agreed upon (Yamanaka et al., 2021; Chiu et al., 2014). Additionally, there was an urge to educate the public and a desire to shift public opinion so that it more accurately reflected the lived experience of dementia. The thought is that by spreading the word about the lived experience, the rights of people living with dementia symptoms would also be upheld. In 2005, Ninchisho (Dementia) Supporter Caravan was launched (Aihara & Maeda, 2020). According to the website of The Japan Dementia International Exchange Platform, by the end of 2020, 13 million people had completed the training and become supporters. The training is geared toward gaining a basic knowledge of dementia and experience dealing with dementia. Further, the government maintains the expectations of dementia supporters. The first three expectations are as follows: (1) have an accurate understanding of dementia, (2) act in an unprejudiced manner towards people with dementia, and (3) show compassion towards people with dementia and their families (Aihara & Maeda, 2020). Japanese organizations and governments, in partnership with international organizations, continue to encourage the development of dementia-friendly and dementia-preventing communities. One major restructuring to ongoing approaches aimed at shifting the collective consciousness was the introduction of the “Growth Strategy 2018  – Reforms for Achieving ‘Society 5.0’ and a ‘Data-Driven Society,’” by the Cabinet. This was a concerted effort to encourage local governments, researchers, and companies to collaborate and develop innovative services and products. According to a report produced by the Dementia Policy Review Project Team, of the Ministry of Health, Labor and Welfare, titled Regarding the Future Direction of Dementia Measures,

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the products and services “friendly to ‘people with dementia,’ including livelihood support from very early prevention to creating an environment for livelihood support and social acceptance” (2018). In this document, they highlighted work to be accomplished from seven perspectives: 1. Creation and dissemination of standard dementia care paths. 2. Early diagnosis/early response. 3. Building medical services that support local life. 4. Building nursing care services that support life in the community. 5. Strengthening support for daily life and families in the community. 6. Strengthening measures for young-onset dementia. 7. Developing human resources responsible for medical and nursing care services. On September 27, 2023, Japan took a revolutionary step in whole heartedly embracing people living with dementia symptoms. In recognizing that the population can undoubtedly expect to increase in numbers of people living with dementia symptoms, the government said, let’s focus on developing a symbiotic relationship. The Japan Dementia Working Group, comprised of people living with dementia symptoms, is one such bold step. In September 2023, as was reported in The Japan Times, members of the group, including Kazuko Fujita who is head of the group and also living with dementia symptoms, is holding a valuable role and is contributing to society by participating in the council meeting. Inclusive measures such as this is exactly what our world needs now more than ever. As Fujita shared with a reporter for The Japan Times, “We can’t achieve a symbiotic society unless (people with dementia symptoms) feel they can continue social activities” (2023). We must trust that our society is less strong than it could be because we relegate people living with dementia symptoms to the sidelines. In a separate interview Kazuko Fujita, a member of the government council as well as head of the Japan Dementia Working Group, told reporters that the council meeting was “the first step toward allowing people with dementia to participate in society” (2023). The unawareness or unfriendliness of diseases with dementia symptoms is reflected in the measurements of a study where 18% of participants reported a fear of dementia diagnosis (Oba et al., 2021). Researchers indicated that most often this was the case due to the perception of the practical, emotional, and social impacts of a diagnosis. These findings highlight the continued need for important programs aimed at shifting the community consciousness toward peace, appreciation, and equanimity. Learning different ways of societal interaction is necessary, as is increasing our knowledge of measures to reduce disease development that has accompanying dementia symptoms.

Risk Reduction One of the ways we can view modifiable risk factors is to group them into micro, mezzo, and macro level sources of origination. Examples of each level are biological, psychological, and social or environmental, respectively. Risk factors

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originating in each level present differently and necessitate different approaches. Although part of our discussion here is grounded in the work presented by researchers in Dementia prevention in Japan, we will also incorporate person-in-environment perspectives that utilize a micro, meso, and macro structure to extend our understanding of modifiable risk factors (Richmond, 1917; Takasugi & Kondo, 2020). Let’s look at some general examples of each and then we’ll explore some significant research contributions to risk reduction. At the mircrolevel, what Takasugi and Kondo refer to as biological, we can consider the number of teeth a person has, the type of diet that is maintained, and nutritional intake (2020). At this level, we would also consider individual adaptation and resilience. At the mezzolevel we will take into account families, friends, and communities and how these might interact in relation to a person’s psychological or economic health. At the macrolevel, we will want to consider promoting social justice, making necessary structural or policy changes, and ensuring optimal social participation. Researchers have investigated the relationship between the number of teeth people ages 65 and greater have and dementia. Based on findings from a longitudinal study, it is suggested that use of dentures can reduce dementia development by 40% (Yamamoto et  al., 2012). Other researchers have indicated a higher incidence of dementia development when study subjects present with 1–9 teeth (Takeuchi et al., 2017). These findings are to highlight the importance of dental and oral hygiene. We can look at the overlapping nature of oral hygiene between biological or individual risk factors and mezzolevel supports such that dentists’ offices are adequately prepared to meet the needs of people living with dementia symptoms (Ione, 2022; Nightingale, 2020). As we can see, members of the dementia health community are strengthened by all key players being on board in reducing dementia development. At the mezzolevel, collaborative efforts are being made to ensure proper and adequate support systems within the community. According to Murata and colleagues, emotional support from friends and neighbors significantly reduced dementia incidence for women (2019). Providing services and support that maintain a sense of belonging and for people to age in place is repeated throughout GAP. Based on findings in the report Dementia prevention in Japan, the greatest risk of dementia development is for people who grew up in socioeconomically poor situations (2020). This is echoed by the findings from a study out of Japan looking at adverse childhood experiences and relationship with later life dementia development. Researchers followed up with 17,412 Japanese adults, ages 65 and greater, from the Japan Gerontological Evaluation Study (Tani et al., 2020). In another longitudinal study, this one with more than four times as many study participants (75,358), from Adachi Ward, Tokyo, researchers highlighted a relationship between childhood socioeconomic status and later life dementia development (Murayama et al., 2019). All study findings suggest the cumulative number of adverse childhood experiences is associated with an increased risk of meeting diagnostic criteria of dementia. Physical activity is another identified and well-established modifiable risk factor. Findings from several studies have indicated 40  minutes a day of walking, for

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people ages 80 and greater is connected to lower dementia incidence (Ihira et al., 2022; Tomata et al., 2019). Physical activity overlaps with macrolevel policies in the construction of sidewalks, thereby increasing access to potentially engage in physical activity (Tani et al., 2021). All of these findings highlight the significance of cross-­level (micro, mezzo, and macro) collaboration as being integral to risk reduction.

Diagnosis, Treatment, Care, and Support As was mentioned previously, GAP promulgates a rights-based approach within a public health paradigm of dementia health. At the adoption of GAP, Japan had already made governmental restructuring that embraced this approach. The Long-­ term Care Insurance Act, enacted in 1997 and went into effect 3 years later, recognized mezzo changes in the shifting of household structures (away from multigenerational) and put forth macro policies that would accommodate these changes. For example, the sochi system of elder welfare placed the onus of care on local governments. This was a system put in place in 1951 and remained largely unchanged over the years. Although there were some changes, as in 1983 when people age 70 and greater, went from having their medical coverage for free to being required to pay a co-pay (Ikegami, 2014). The government was aware of changing needs – from acute to chronic to long term – and operating within a system that was inadequate at meeting these needs. This shift was initiated by a recognition that the population was living longer. The Long-term Care Insurance Act also reduced the age of recipient care from 70 to 65 and created a lifetime limit, after which all expenses must be paid out of pocket (Tatara et  al., 2009). Other notable adjustments were made in 2006, to accommodate some people ages 75 and greater (Ikegami, 2014). In 2018, the most significant restructuring took place, where decisions transferred from the municipal level to the prefectural level. It’s important to keep in mind that legislative changes focused on dementia health are operating within this larger medical system and structure of reform. As was mentioned previously, the greatest shift witnessed with the Long-term Care Insurance Act was from the sochi system to a perception of people as holders of rights. On the diagnostic front, in 2008, The Emergency Project for Improvement of Medical Care and Quality of Life for Persons with Dementia was released. Herein it emphasized that early diagnosis was an important starting point for most appropriately meeting the needs of a population increasingly living with dementia symptoms. A major policy enactment that occurred just before GAP, was in 2015 when The New Orange Plan was announced (a revision from the original 5-year plan developed in 2012). Developed out of a person-centered, rights-based approach, the team collected stories and opinions from people with dementia in order to inform the writing of the policy. A unique feature of the team development was that not only was the MHLW involved, other agencies were as well, from the National

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Police Agency to the Ministry of Justice to the Ministry of Agriculture, Forestry and Fisheries and beyond. After joining GAP, the commitment to diagnosis, treatment, care, and support intensified. While Japan had a proven history of strengthening their communities, by embracing people living with dementia symptoms, they stated in their policies their common desire “of living a quality life with rigor,” and emphasized that people living with dementia “will be treated with respect” (Dementia Policy Review, 2018). For example, under work to be done from the second perspective listed above, the policy indicates the need for specialized dementia centers to be located within close proximity and easily accessible for early diagnosis. With efforts being focused on local communities and recognizing the connections between quality of life and livelihood for people to remain in their homes, close proximity to accessing services is highly valued.

Support for Carers As was discussed in the previous section, the Regarding the Future Direction of Dementia Measures outlines specific documents that articulate the need for dementia care packages to “provide peace of mind for people with dementia and their families” (2018). One way to offer an opportunity for peace of mind is for people living with dementia symptoms to maintain a purpose or key role in society. Highlighting the urge in GAP for public-private partnerships to forge, a local restaurant owner in Tokyo collaborates with the government to meet the needs of people living with dementia symptoms and carers. Once a month, people living with dementia symptoms making dining at the Restaurant of Mistaken Orders a lively and entertaining experience. People living with dementia symptoms don orange aprons and commence taking orders and waiting on patrons. This opportunity for people living with dementia symptoms can also be seen as an opportunity for caretakers to balance others’ care with their own care. Knowing that for the time the person is at the restaurant they are contributing to society and feel their sense of purpose strengthened can translate into support for caretakers. A community approach to thriving, such as the Restaurant of Mistaken Orders, is a way to minimize isolation, increase individual independence and ensure overall systemic flourishing. Another programmatic development that can be seen as a measure of support for carers, is the use of bright orange bracelets by people who complete the city approved dementia training. One of the benefits to a national program of orange bracelet wearers is a community approach where carers may feel greater assurance that the person living with dementia symptoms is a valued member of a community outside the home. When the whole community is on board to encourage the wellbeing of all members, we see a shift away from a single person responsible and potentially feeling burdened, to the person feeling supported and a reinforcement of belonging and security.

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One priority is to maintain and improve the infrastructure to a comprehensive and coordinated care system, one that supports people and caregivers from diagnosis to day-to-day living to end-of-life needs (Nakanishi & Nakashima, 2014). One national study was recently conducted on the overall experience and satisfaction of caregivers (Takechi et al., 2023). Researchers surveyed 3514 caregivers who reside in 47 prefectures. All respondents indicated a clear system of information delivery and felt supported, although 60% of respondents felt satisfied with the quantity of information received. This, according to Takechi and colleagues, is an indication of insufficiency of the information received. Based on the results of this study, two service gaps identified are emotional support and coping with dementia. Some creative efforts are underway in Matsudo, Japan. There is an encouragement for people who work at banks and taxi services to expand their knowledge of dementia symptoms and learn ways to comfortably interact with people who are living with dementia symptoms (Toba, 2021). With concerted efforts to move away from a medical model and toward a truly embedded community approach, governments and businesses are creating unique programs. For example, QR code stickers, created by a company Orange Link, can be placed on people’s clothing for the purpose of being tracked. When a person living with dementia symptoms is lost in town, then another person is able to scan the QR code on the person’s clothing with then connects the people with an official at the city’s welfare department who will connect the sticker wearer with their home. In 2016, the city of Iruma offered this service for free. As much promise as technology holds, it is also important that we continue to build programs that offer human contact, personal support, and human connections. When natural disasters occur and information systems are disrupted we do not want to be isolated not knowing who are our neighbors.

Information Systems for Dementia As was just discussed, a citywide GPS infrastructure can be used to ensure the safety of all community members. Another form of the QR code technology mentioned above, to ensure people who are living with dementia symptoms are not unwantingly wandering the streets, is NailQ, also developed by the company Orange Links. According to Asia Health and Wellbeing Initiative, a QR code is applied to a person’s nail, lasts about 2 weeks and costs about ¥250 a month to maintain (approximately less than two US dollars). Even prior to the formalized introduction of GAP, Japan was paving a way for use of information and communication technology to maintain residents’ autonomy. The aim was to use ICT in a way that promoted the greatest continuity in living for a person, to the extent that their life was disturbed as little as possible in comparison to how their life was prior to diagnosis (Sugihara et al., 2015). As is evident, Japan has long held a commitment to person-centered dementia healthcare policies, practices, and programs.

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Research and Innovation In line with GAP’s public policy paradigm and promotion of person-centered views, there are some innovative research efforts occurring across multiple prefectures. One study conducted in-depth interviews with 36 people living with mild to moderate dementia (Mamun et  al., 2022). Researchers noticed five recurring themes emerging when conducting inductive content analysis: desire of being connected, freedom to decide, involvement in activities, status quo, and self-reliance (Mamun et al., 2022). This awareness can be seen woven into innovative policies, supports, programs, and social values by ensuring to meet the needs of people living with dementia symptoms. Researchers outlined in a report, Assessing the Preparedness of the Japanese Health Care System Infrastructure for an Alzheimer’s Treatment, some fascinating uses of technology currently being employed (2018). From tracking devices to monitoring systems to virtual reality there are some real possibilities to maintain personhood in dementia health. Let’s look at some examples. In the town of Itami, Hyōgo Prefecture, about 20 km northwest of Osaka, street monitoring devices have been installed. These Wi-Fi signaling stations (about the size of a road sign and secured on a pole about the level of a traffic light) communicate with a small device that is presumably on a person enrolled in the program (Dooley & Ueno, 2022). When a person walking on the street, and who is enrolled in the program, walks by one of the boxes, it sends an alert to people registered and noted as wanting to be notified. Another example is a company, SenterCare is in the process of creating a behavioral monitoring system, informed by adaptive AI technology, to support people in a “personalized and non-intrusive way” (Leichman, 2023). The idea is that the system will get to know the behavioral patterns of the person and support the person with aging in place. Meeting physiological and safety needs of people living with dementia symptoms is important. While technological advancements in systems and devices have proven effective on this front, two needs that remain unmet are self-esteem and agency (Koo & Vizer, 2019). With the advent of new technologies and with an increased reliance on technology, there is a real opportunity for maintaining person-centered design techniques. The ultimate mark of success in a design process could be the person for whom the device is being designed is upheld and psychological and social needs of the person living with dementia symptoms are met. To minimize bureaucratic tape between existing policies and programs for healthcare, long-term care, and welfare, the national framework emphasized public-­ private collaboration. Never is this more evident than with the “Research Project on the Construction and Use of a Model for an International Public-Private Partnership in Dementia Research.” Currently, the Ministry of Economy, Trade and Industry (METI) plays a major economic role in funding research efforts. As of March 2023, 100 organizations have joined the council, and are committed to all people involved in dementia health enjoying a style of living that promotes peace of mind for everyone.

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Summary Based on the last report by ADI, From Plan to Impact III – Maintaining dementia as a priority in unprecedented times Japan’s leaders have focused a majority of efforts on increasing attention on funding and policy evaluation methods (2020). In recognizing a continued growing demand for the needs of people living with dementia symptoms to be met, a push for a symbiotic relationship with diseases that have accompanying symptoms of dementia is being encouraged. As was mentioned in the beginning, a desire for a basic dementia law has been enacted. In June 2023, parliament passed a bill, the Dementia Basic Act, aimed at designing a societal infrastructure where people living with dementia symptoms can thrive and flourish. The act aims to ensure people with dementia symptoms maintain their dignity and live a life of comfort (Dementia Basic Act art. 1). Other major shifts are the formation of a task force headed by prime minister, cross-ministry development and ¥30 billion in FY2024 (Benoza, 2023). Unlike instances where laws are passed and yet remain empty in the absence of funding to enforce what is outlined in the law, Japan is committed to making a loving, peaceful impression on the experience of living with dementia symptoms. Three articles in particular highlight the significance of this law. Article 11 stipulates “the national government must formulate a basic dementia measures promotion plan,” Article 14 reinforces the public health paradigm of GAP, by stating “the national and local governments must implement measures to raise awareness about dementia,” and Article 15 indicates “the governments must promote new goods and services that enable the people with dementia to live their daily and social lives with fewer difficulties.” Meeting these measures allows all humans to live peacefully.

India Geographically, India’s land mass is 2,973,190 km2, with the Himalayan mountains in the northeast separating other parts of Asia and otherwise surrounded by water – Bay of Bengal in the east, the Arabian Sea in the west, and the Indian Ocean in the south. At the time of this writing, the population, according to World Population Review is 1,432,753,374. New Delhi is the capital with a population of 32,941,309 and a population density of approximately 75,781 people per square kilometer. New Delhi is estimated to be the most densely populated city on Earth. The median age of India is 22. The government is structured as a federal republic, under the rule of a parliamentary system. At the time of this writing, Her Excellency Smt. Droupadi Murmu serves as President. The World Bank considers India the world’s largest democracy (2021). The country is divided into 28 states and 8 union territories, with further delineation into districts and subdivisions. Each state has a governor and chief minister. The healthcare system is named Ayushman Bharat which is separated into two

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arms: Pradhan Mantri Jan Arogya Yojana and Health & Wellness Centers (HWC). According to the official website of the MHFW, the intention is for the two arms to be complimentary in offering services from preventive to promotive to curative and from rehabilitative to palliative (2023). Basically, the first arm offers insurance coverage, and the second arm takes a community-based approach to offering comprehensive services. As of 1992, India has been making an effort to broaden understandings of dementia symptoms. A nonprofit, Alzheimer’s and Related Disorders Society of India (ARDSI) was created. More recently, the passage of the Mental Health Care Act of 2017, laid some of the ground work for more recent dementia policies and programs. It is important to note the vast variation in region, language, and culture spanning across India. It is estimated that there is a treatment or service gap of nearly 90% (Dias & Patel, 2009). To put this differently, 1 in 10 people living with dementia symptoms receive a diagnosis, treatment or care (Nulkar et  al., 2019). According to a 2010 report by the ARDSI, stigma of living with dementia symptoms remains high and there is also a lack of a national plan around dementia, in particular framing it as a public health priority (Shaji et al., 2010). Encouraging a framework of public health is seen as important and is rapidly changing.

Dementia as a Public Health Priority At present, there are two main national programs that oversee the dissemination of dementia policy, programs, and procedures: the National Mental Health Program and the National Program for the Healthcare of the Elderly. Very recently, the National Institute of Mental Health and Neurosciences (NIMHANS) and the Dementia India Alliance (DIA) submitted a dementia action plan to the Health Minister for the State of Karnataka, Dinesh Gundu Rao, who declared dementia a public health priority on September 21, 2023. This declaration coincided with World Dementia Day as well as aligns with GAP. It is suggested that the current Gruha Arogya (Hindi for group health, a program administered by the State Health Department) can offer dementia screening service, as listed under non-­communicable diseases for eight districts within the state (Ramanagara, Tumakuru, Belagavi, Gadag, Mysuru, Chikkamagaluru, Ballari, and Yadgir). There are discussions of offering door to door screening for example, in some hilly and very remote areas where it might be impossible for people to travel to a HWC. It’s important to note that from a historical perspective, the Government of Karnataka has favored unity over division. A sense of unity pervades even at times of unrest. We can see this occurring throughout the history of the State of Karnataka. According to the official website of the Government of Karnataka, we can witness unity from the 1930s with the Civil Disobedience Movement aimed at remembering the Jalianwala Bagh incident of 1919 to the Quit India Movement of the early 1940s to independence in the 1950s. This commitment to unity is apparent in dementia policies and programs today. In

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September 2023, NIMHANS Director Prof Pratima Murthy remarked about the unity in families by stating “our biggest asset is our families.” Beginning from a familiar place, one of unity and belonging, has the potential to offer an advantage on increasing awareness of living with dementia and create an environment of friendliness where everyone can live and thrive.

Awareness and Friendliness Using well researched principles for designing age and dementia-friendly communities (DFC) can often go a long way in increasing livelihood and promulgating agency of people living with dementia symptoms (Sinha et al., 2022; Kumar et al., 2019b). Put differently, it has been argued that environmental space, village or city streets that are unfriendly to people living with dementia symptoms are a direct assault on the personhood of the person living with dementia symptoms (Duggan et al., 2008). The concept of DFC has been defined as “a community in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them” (Knapp et al., 2007). With the widespread variation throughout India, local values, customs, culture, caste, and geography all need to be considered when implementing DFC (Sinha et al., 2022). Another benefit to adopting a district-specific creation process of DFC is promotion of risks that are specific to a place and the people who live there. Researchers have highlighted the need to increase awareness among the general public as well as members of the medical community (Thomas et al., 2023). Others have studied the effects of stigma on the lived experience of dementia (Hurzuk et al., 2022). Hurzak and colleagues, as part of a larger study, interviewed 8 people living with dementia, 19 caregivers, and 16 health professionals from two cities (Chennai and Delhi). Study subjects identified that part of the widespread stigma that accompanies dementia is most likely from a lack of understanding and no access to resources from credible sources. The government of India recognizes a need to have separate state programs and policies that accurately reflect the area and meet the needs of citizens. For example, as dynamic and innovative as the work is that is occurring in the State of Kerala or the City of Kochi, policies and programs implemented here would not necessarily be as successful if they were to be implemented in the neighborhood of Dharavi in the city of Mumbai. For example, residents in Kochi have access to an abundance of transportation options (rail and water taxis) that make daily living different than in a city with minimal transportation options. Nonetheless, Kerala State Initiative on Dementia, seeks to increase awareness of living with dementia symptoms, and access to diagnostic tools and care services. Additionally, Kochi is the only DFC in the country. Meanwhile, in the district of Ernakulam (within which the city of Kochi is located), dementia-friendly work is ongoing and is also responsible for the passage

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of Kochi as a DFC. It is worth noting that Ernakulam is the only district nationwide with absolutely no poverty. After studying results reported by ARDSI, as well as lessons learned from the dementia-friendly Ernakulam project, the government, specifically the Social Justice Department committed a total of 1 crore rupees to a wide array of dementia programs (crore is derived from Sanskrit word koti meaning ten million – this is roughly the equivalent of 120 thousand U.S. dollars). The executive director of Kerala Social Security Mission, under the Department of Social Justice, Shri Shibu A IAS, in September 2023, stated, “Many people misunderstood dementia as a psychological problem” (Jose, 2023). With money earmarked and a recognition of the importance of shifting public awareness as well as and focusing on risk reduction, a template for successful living and aging for all is accessible.

Risk Reduction According to an ADI 2016 report, risk identification needs to be integrated across primary, secondary, and tertiary care systems (Prince et al., 2016). In 2022, diabetes and hypertension were recognized as modifiable risk factors in later life dementia development and thus became the focus of screening at HWC.  Additionally, the country created the National Programme for Health Care of the Elderly (NPHCE) to meet the growing demands of an ever-increasing population of people ages 65 and greater, some of whom are also living with dementia symptoms. According to the MHFW, one of the ways to meet needs is by providing information, education, and communication activities on healthy lifestyles. A focus on risk reduction is of utmost importance to the government in Karnataka, who also emphasized the need for proper training of caregivers and creating livelihoods through caregiving need to be strengthened in existing programs. Dinesh Gundu Rao, Karnataka Health Minister said, “Staying mentally active is the way forward for all older people to reduce the risk of dementia and ensure healthy ageing” (Express News Services, 2023). According to the government website, Karnataka is home to more than 500,000 people diagnosed with dementia (Raj, 2023). We can estimate this to be about 1% of the overall population in Karnataka. To be clear, these figures are representative of people who have access to diagnostic services. It is a real possibility that many more people living with dementia symptoms die undiagnosed. Another approach the national government is promoting is the creation of a District Mental Health Programme (DMHP) under NMHP.  DMHPs have been implemented in a total of 704 districts. According to Integrated Government Online Directory, as of August 2022, there are 766 districts throughout the country, which equates to a 92% rate of coverage in meeting the detection, management, and treatment of mental health needs of people throughout the country. Additionally, the Central and State Mental Health Institutions and the Psychiatric Wings of the Central and State medical colleges have all joined efforts to offer early detection and treatment for people affected by AD.

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According to a recent report released by the joint efforts of the International Institute for Population Sciences & MHFW, there is a considerably high level of Type 2 diabetes. Additionally, the country is experiencing increases in other detected modifiable lifestyle factor areas. For example, increases in people experiencing diagnosable hypertension has been steadily on the rise (Basu et al., 2023; Anchala et al., 2014). This upward trend is seen in both urban and rural populations, with both diseases, and similar variation with symptom management is seen across the population. Moreover, in rural areas, people experience a strong underdiagnosis. Nationwide, heart health is continuing to diminish. Awareness of cardiovascular disease, diabetes, and hypertension continue to increase nationwide, and a recognition that these three diseases are modifiable lifestyle factors connected with dementia health, inform current public health interventions aimed at reducing the prevalence of dementia diagnosis. Other researchers conducted a cross-sectional analysis with data from three studies to focus on three other modifiable risk factors: hearing impairment, diminished access to education, and physical inactivity (Mohanty et al., 2022; Sharma et al., 2022; Belessiotis-Richards et al., 2021; Podder et al., 2020). The National Health Mission of India and the National Programme for Prevention and Control of Deafness continues efforts to prioritize meeting the needs of reduced hearing capabilities across the nation. Just in October 2023, the national programs expanded to reach a greater portion of the population.

Diagnosis, Treatment, Care, and Support As has been repeated throughout this entire section on India’s national approach to dementia, the diversity of India must also be reflected in models of dementia health delivery. As was mentioned above, there is vast variation in region, heritage, language, and culture across India. In other words, collaborative community-based care models have been promoted as the gold standard of delivery. With prevalence estimates ranging from 1% to 10%, we can see the vast variation across states and districts (Ravindranath & Sundarakumar, 2021; Nulkar et  al., 2019; Shaji et  al., 2005). Prior national estimates have been critiqued for sampling from communities that are not reflective of cross-state and urban and rural differences. Nonetheless, as has been mentioned above, dementia symptoms remain underdiagnosed (Srivastava & Muhammad, 2022; Kandiah et  al., 2021). There are a number of reasons for underdiagnosis as we’ve seen above and will learn in future sections. Many of these reasons span the globe and are not country or district specific. Recently, a research team highlighted a fairly low prevalence of diagnosed dementia symptoms in the Union Territory of Delhi at 4.5% to near double the rate in the State of Odisha 9.87% (Lee et al., 2023). The team recruited study subjects from the Longitudinal Aging Study (LAS) in India to offer the first truly representative sample of prevalence rates at both national and state levels. In the Harmonized Diagnostic Assessment of Dementia for the LAS in India researchers employed the Clinical Dementia Rating (CDR; Morris, 1993). CDR takes into consideration six

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key areas: memory; orientation; judgment and problem solving; community affairs; home and hobbies; and personal care. The research team included additional areas based on the recommendations of experts in the field, by considering judgment and problem solving and changes in memory based on self-reports. There is an inexorable risk of dementia diagnosis with increased age. It goes without saying that based on model projection rates, it is suggested prevalence rates will rise with an increased population age 65 and greater (Ray, 2023; Lee et  al., 2023; Ravindranath & Sundarakumar, 2021). According to research from the International Institute for Population Sciences, there is more than a 10-year age span of life expectancy for people who live in Bihar compared with residents of Kerala, 64 and 75, respectively (2020). Furthermore, the prevalence discrepancy between population age range of 60 and 64 compared with study subjects ages 85 and greater changes from 3% to 25% (Lee et al., 2023). This begs the question of how might prevalence data look if we were to further delineate age groups beyond 85 rather than group everyone over the age of 85 together. Would we see a similar upward trend as witnessed in lower age ranges? Bihar is considered the third most populated state in India, with a substantial rate of poverty and illiteracy. According to the Ministry of Education illiteracy rates range from 6% in Kerala to 31% in Bihar. Economic disparities and caste discrimination, among other factors influencing overall health cannot be ignored. Moreover, the heterogeneity in living conditions needs to be taken into account when implementing dementia policies. These study findings make ever so apparent the absolute need to design national dementia policies that are flexible and allow for the specific and unique needs of cross-variation in communities, districts, and states.

Support for Carers Multigenerational homes are a traditional form of living arrangement throughout India. Although this pattern of living is maintained in present day, mostly it is in rural areas. It is estimated that more than 300 million people, or about 18% of the population, live in this structure of housing (Cohn et al., 2022; Hasnain & Srivastava, 2018). One family responsibility that is embedded in many cultures throughout India is caring for older generations, both in the short- and long-term (Brinda et al., 2014; Gupta, 2009). Although there are some shifts with, for example, families in hill villages seeing the younger generations migrate to cities for employment, multigenerational families remain prominent. Not unlike elsewhere across the globe, COVID-19 presented particularly unique challenges for caregivers of people living with dementia symptoms in India. Although, based on location, access to resources and other factors, experiences varied (Thomas et  al., 2023; Mondal et  al., 2021; Sinha et  al., 2017). In one study, researchers interviewed 31 caregivers who utilized services from a geriatric mental health outpatient clinic that is housed within in a non-governmental organization (NGO) in Chennai, India (Vaitheswaran et al., 2020). Chennai, the capital of the

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State of Tamil Nadu, located in the southeast on the Bay of Bengal, and is considered to have one of the lowest rates of poverty across the nation. Nonetheless, study subjects (pooled from a list of people who had used services in the 6 months prior to pandemic lockdowns) expressed needs during the pandemic that included both immediate and extended needs. During the pandemic, caregivers shared experiences that the research team grouped into three themes: video-consultations, telephone-based support, and clinic-based in-person. Specifically, study participants felt responsible for protecting their relative with dementia symptoms from potential infection with COVID-19. Caregivers also reported an increase in BPSD and many attributed this to changes in the daily routines. Additionally, caregivers witnessed an increase in their own health problems. A personal anecdote reported by a study participant is as follows: a son witnessed his dad expressing increasing agitation as a direct result of an inability to walk around town. When attempts to walk outside were made, authorities instructed father and son to return home. The son then requested approval to travel out of the city to a country home. The request was denied due to the authorities not recognizing dementia as an emergency medical condition (Vaitheswaran et al., 2020). Now more than ever, in a post-pandemic era, we must coordinate dementia health priorities with clear and similar language being used across micro, mezzo, and macro levels.

Information Systems for Dementia One example of innovative use of technology is QR codes in Project Chetana (Hindi for Project Consciousness) that was developed by Akshay Ridlan, a Mumbai-based data engineer (Belagere, 2023). He is marketing the QR code necklace locket to State agencies as a way to increase safety of people living with dementia symptoms. Many have echoed similar sentiments of acceptance of dementia. One prominent idea in India is embracing the increase in people living with dementia symptoms. In other words, create DFC that allow people to age in place and feel valuable and connected. Many others have focused on creating patient-centric technologies to ensure the safety of everyone in the dementia community (Pappadà et al., 2021). The technology behind QR codes can be extended to meet the demands of this action step by ensuring the number of people of people living with dementia symptoms is adequately measured. Another way information systems and dementia health intersect is the ways in which technologies impact, enhance, and augment the caregiver role. One team of researchers is interested in expanding the knowledge base of the dementia caregiving experience in Bengaluru, India, based on people who have utilized services at the NIMHANS geriatric clinic. Specifically, the team aims to understand the extent to which caregivers see care needs as an interference with their life, the overall mood and quality of life of caregivers (Brijnath et al., 2022). They seek to measure this by using Moving Pictures India, a project with four main objectives. First, the

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research team will video record interviews on cultural understandings of dementia, social and clinical care, sources of help, and care pathways with caregivers as well as members of the medical community. Second, the team aims to create films with people living with dementia and caregivers. Third, using a randomized controlled trial design measure the feasibility of disseminating resources. Fourth, offer free access to the videos on-line and gather use analytics and other data. From these findings, the team desires to create an intervention to support caregivers in delivering appropriate care at home. Based on the immense quantity of languages spoken across the country and an inadequate supply of properly trained dementia specialists, linguistic processing models might be a way to support the detection of neurocognitive disorders prior to dementia symptoms being recognized or spreading further in the body (Liu et al., 2022; Luz et al., 2018). Researchers used AI technologies, relying on a pretrained transfer learning model to create a language model. Then, using classification of AD-specific changes were able to predict the presence of AD. Diminished linguistic comprehension and verbal expression patterns are well researched among people living with AD (Wang & Wang, 1999). Liu and colleagues used the model with 78 healthy control subjects and 78 people diagnosed with AD. Their model offered an 88% accuracy rate in predicting AD. In addition to using technology to increase rates of safety, support caregiver experience, and broaden access to diagnostic procedures, there is also the use of technology by people living with dementia symptoms in a world that is ever more reliant on new technologies (Parant et  al., 2017; Nygard & Starkhammar, 2007). The use of assistive technologies, in the form of robots, is increasing and research suggests people living with ADRD are less than satisfied (Lu et  al., 2021). It is important that the technological devices do not further increase the very symptoms it is intended to decrease (e.g., stress, frustration, agitation) (Bhargava & Baths, 2022). Taking into consideration the experience of users when designing future products and services needs to ensure the ease of use is appropriate for the target audience of users.

Research and Innovation In 2018, we can see another strategic move of India to recognize the importance of expanding awareness of dementia, when the Medical Council of India updated the Competency-Based Undergraduate Curriculum for the Indian Medical Graduate to include geriatric research (Cahill, 2018). Specifically, the curriculum requires graduates to be aware of the national programs for meeting the needs of people living with ADRD, as well as gain a clear understanding of health prevention mechanisms in conditions that are specific to aging and dementia. In addition to medical school curriculum shifting to reflect the growing demands of an aging population, the field of social work across India is also seeing changes in curriculum and internships. It wasn’t until recently that social work was a recognized profession. Now, internship requirements include stints in geriatric wings of hospitals.

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Research efforts are ongoing and aimed at influencing policy development, funding, and implementation. Two important documents, created and released by ARDSI, informing policy decisions are the research efforts presented in Dementia India Report of 2010 and the Dementia India Strategy Report of 2018. One major research effort in India is the STRIDE project, with two main research aims: build research capacity and develop research evidence into what interventions work most effectively. Overall, the project, in partnership with the London School of Economics and Political Science as well as the ADI, seeks to strengthen responses to dementia in developing countries. Two potential outcomes of this project are to develop a national dementia plan, and increases in the quality of living among people affected by dementia symptoms. From a Finnish-based study, research efforts now span the globe. The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) trial is a randomized controlled trial, with study subjects comprised of at-risk adults ages 60–77, that investigate the relationship between cognitive decline and lifestyle factors (Kivipelto et  al., 2013). This is an ongoing project, with a 10-year follow-up, with the 1260 initially registered study participants. Out of this project grew the World Wide-FINGER (WW-FINGER) project that seeks to develop global efforts aimed at dementia risk reduction and prevention (Kivipelto et  al., 2020). There are ongoing projects across the globe. Some research efforts in GAPning stages, others in the recruitment phase, and others actively engaged in research efforts with adequate funding sources. Currently, there are two longitudinal studies being conducted, focusing on two different populations of people ages 45 and greater: urban and rural. In Bangalore (urban), the study is funded by the Tata Trusts and in Kolar (rural), the Srinivaspura Aging, Neuro Senescence and COGnition study. Both studies employ cognitive assessments used in FINGER, adjusting appropriately for cultural and literacy needs of people throughout India. Researchers seek to understand the differences among people in two populations who differ in health, education, language, and other factors. It is important to note that in a country that does not consider yoga to be a physical activity, researchers hypothesize that citizens in rural areas may be more open to adopting yogic practices instead of a prescribed physical exercise regimen (Kivipelto et al., 2020). Prior to transitioning into the intervention phase of research endeavors, population data must be obtained.

Summary One entry route to increasing knowledge of diseases and dementia symptoms is ensuring a competent medical workforce as is evidenced by a revamping of medical curriculum. Also, shifting public perceptions of what it means to live with dementia symptoms and also transform inclusion of people living with dementia symptoms from a burden to an asset. Kerala State Initiative on Dementia, which entails awareness, diagnosis, care services, and dementia-friendly initiatives might serve as a roadmap for other states and districts to implement similar programs and initiatives.

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Researchers, policy advocates, medical professionals, caregivers, and people living with dementia symptoms have all highlighted the need for dementia-specific funding to increase (Chaudhary, 2023). With the Health Minister of the State of Karnataka declaring dementia a public health priority, the road to a national plan is being paved. What is the feasibility and possibility for wealthy states to subsidize programs in poorer states and union territories? In a video titled Understanding Dementia in India, available on YouTube and presented by ARDSI the resounding claim to shifting the current state of living with dementia symptoms is for the community to be involved. There are two main reasons for this. One, for people living with dementia symptoms to not feel isolated and instead feel valued and connected to a much larger community. Second, public perceptions of dementia symptoms need to change. Rather than objectifying people living with dementia symptoms by seeing them as something that needs to be managed, avoiding eye contact and only talking with caretakers, establishing safe communities where everyone can thrive is a priority.

United States Geographically, United States’s land mass is 9,147,592  km2, extending into the Pacific Ocean and far Northwest above Canada. At the time of this writing, the population, according to World Population Review is 340,564,809. Washington District of Columbia (D.C.) is the capital with, according to the U.S. Census Bureau, a population of 671,803 and approximately 28,449 people per square kilometer. New York City, in the State of New York is the most densely populated city with 71,867 people per square kilometer. The median age is 38. The government is structured as a representative democracy. In other words, citizens elect government officials, and these officials represent citizens’ views. There is a president and vice president of the nation (executive), with three branches of federal government designed to address different areas: legislative (make laws), executive (act out laws), and judicial (review laws). There are 50 states and within these there are counties, cities, towns, and townships. There are also districts, typically schools and voting are divided this way. Mayor-council or council-manger are the governmental structures adopted by City governments. At the county level there is a commission who assumes both legislative and executive functions. In 2005, money was first allocated to focus on brain health, with the creation of an initiative: Healthy Brain. Out of these efforts a partnership was forged between Center for Disease Control and Prevention and Alzheimer’s Association. The United States has operated within a public health paradigm of dementia health since 2011, with the introduction of a national plan – The National Alzheimer’s Project Act.

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Dementia as a Public Health Priority Numerous efforts, cross-agency collaborations, and public-private partnerships have developed between 2011 and now. For example, the Centers for Disease Control and Alzheimer’s Association co-produced three publications: 2023–2027 Healthy Brain Initiative State and Local Public Health Partnerships to Address Dementia, The 2018–2023 Road Map and The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013–2018. The intention with these publications is for state and local agencies to find guidance on ways to promote cognitive health, address cognitive impairment for people living in the community, and help meet the needs of caregivers. Four areas of focus have shifted from the following (listed in order of stated prioritization) educate and empower; develop policies and mobilize partnerships; assure a competent workforce; and monitor and evaluate – to risk reduction of cognitive decline; dementia caregiving; early detection, diagnosis and management of cognitive impairment; and community-­clinical linkages. One example of a public health program that developed in the city of Baltimore, in the State of Maryland is the “Engage and Educate the Public.” University and community partners are motivated to sharing with the public the health inequities and relationship between risk factors, Black Americans and dementia development. Based on findings from multiple studies, spanning more than two decades, Black Americans are twice as likely as White Americans to experience dementia symptoms (Findley et al., 2023; Kornblith et al., 2022; Chen et al., 2019; Amjad et al., 2018; Taylor et al., 2009; Teresi et al., 2002; Gurland et al., 1999). Another study indicated Black Americans have higher rates of vascular dementia and lower Parkinsonian dementia compared with White Americans (Froehlich et  al., 2001). These findings highlight not just the inequities in health, but also stress the importance of differentiating etiologies of dementia development and treatments. The CDC supplements state and local funding of a public health program, Building Our Largest Dementia, whose aim is to educate and empower the public on the importance of brain health (2020). As was mentioned previously, educate and empower is also a theme in the road map, where one measure is intended to enhance the health, wellbeing, and independence of people living with dementia symptoms (Alzheimer’s Association, 2018). We can see reflected in policy and program development the bare bones of person-centered language and a clear emphasis on brain health and cognitive functioning. For example, another measure of public health focus, appearing in an Appendix of the Healthy Brain Initiative, is the encouragement to “partner with educational systems (K-12 and postsecondary) to include brain health and dementia in their curricula” (2023). Great emphasis is on the management of cognitive impairment, where sometimes language suggests a person living with dementia symptoms is a passive recipient of care. At the same time, promulgating a rights-based approach can be seen in the National Strategy to Support Family Caregivers, wherein it states that one priority is for people receiving

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services to maintain “autonomy, independence and right to self-determination” (ACL, 2022). This language echoes the suggestions of GAP. It is important to note that a companion document was created Healthy Brain Initiative: The Road Map for Indian Country for the purpose of meeting the unique needs of public health systems who serve American Indians and Alaska Natives. In 2020, the Administration for Community Living increased its total funding amount to the AD Programs Initiative (ADPI), to include grants and resources to Tribes and Tribal Associations (TTA). In 2022, $5 million was marked for TTA to increase efforts and dementia health. In March 2023, Comprehensive Care for Alzheimer’s Act included legislation to request from Center for Medicare & Medicaid Innovation (CMMI) different payment structure for dementia care management. Several months later, in July 2023, Biden (president of the United States at the time) announced an initiative that would allow a pilot payment structure for Centers for Medicare & Medicaid Services (CMS). With an absence of dementia services being covered under fee-for-service structure, real needs are being unmet and this pilot payment structure would allow the testing of an innovative model. Beginning in Summer of 2024, the Guiding an Improved Dementia Experience (GUIDE) Model, according to CMS, aims to focus on dementia care management, including “improve quality of life for people living with dementia, reduce strain on their unpaid caregivers, and enable people living with dementia to remain in their homes and communities” (2023). CMS indicates the delivery of a comprehensive care management system, caregiver education and support, and respite services will be three ways these previously stated goals will be achieved. It’s important to note that Section 3021 of the Affordable Care Act (ACA) maintains the authority of the GUIDE Model. Further, when the National Alzheimer’s Project Act (NAPA) was introduced in 2011, it was established by Congress under the ACA. Although updates occur annually to NAPA, it was not until 2021 that GAP explicitly stated a strong commitment to risk reduction. We’ll return to a discussion of risk reduction efforts in a moment, however, first let’s look at measures focused on increasing awareness and friendliness of living with dementia symptoms.

Awareness and Friendliness According to Pan American Health Organization, the U.S. is focused on destigmatizing dementia. Contained within the national plan is an explicit stating to reduce stigmas and misconceptions of living with dementia symptoms. One way of reducing the stigma associated with living with dementia symptoms is a program in the State of Minnesota, ACT on Alzheimer’s. In 2015, this program was introduced at a national conference, and out of this grew a national initiative: Dementia Friendly America. On a global scale, this is one effort toward creating an inclusive dementia global environment. It’s important to remember that dementia policies are embedded within aging policies. For example, WHO’s efforts to encourage Age Friendly Cities and Communities is one component to dementia inclusivity (van Hoof &

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Marston, 2021). Just as has been emphasized with effective dementia policy development to include people living with ADRD, the inclusion of adults ages 65 and greater in policy development is necessary. Area Agencies on Aging are a community-based approach to supporting people living with dementia symptoms. This organization reinforces efforts to promote aging in place (Mayo et al., 2021). One way to strengthen aging in place is to ensure the infrastructure for quality-of-life measures for people living with dementia symptoms. A longitudinal study in the U.S. found that self-stigma was associated with poor quality of life outcomes in persons with early-stage dementia (Burgener et al., 2015). Findings from two other studies concur on the detrimental effects of stigma (Bacsu et al., 2023; Best & Arseniev-Koehler, 2023). The extent of impact is far reaching, with one result being a delay in diagnosis (López et al., 2020). These findings highlight the overlap in importance to operate within a public health paradigm, for reducing stigma, increasing access to early diagnosis, and cross-national representation in study subjects. We will learn more about the significance of these last two areas in future sections.

Risk Reduction In 2021, there were policy updates to the NAPA, wherein specific efforts are directed at recognizing the significance of engaging in risk reduction as a measure for changing the course of dementia trajectories. According to the Department of Health and Human Services, the 2021 iteration of NAPA delineates six areas of focus: research on risk factors, translation of research into clinical practice, accelerated public health action, expanded interventions through the National Aging Network, addressing inequities among marginalized populations, and coordinated public engagement (2021). Much focus has been on modifiable lifestyle factors. As we’ve discussed previously, modifiable risk factors are: traumatic brain injury, air pollution, excessive alcohol, smoking, cardiovascular risk, less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact. Many other areas are being considered, such as sleep and childhood trauma. Dhana and colleagues conducted a major population-­ based study and found that individuals who made multiple healthy lifestyle choices (physical activity, not smoking, light-to-moderate alcohol consumption, a high-­ quality diet, and cognitive activities) may have a much lower risk for AD (2020). More precisely, researchers estimated for people who combine two or three lifestyle choices, there is a 37% lower rate of incidence and nearly doubled when selecting four or five healthy behaviors (Dhana et al., 2020). These findings highlight the malleability of health outcomes, the importance of maintaining equal access to health promotion programs, and continued efforts aimed at identifying additional modifiable factors. Programs aimed at preventative approaches must be prioritized and adequately funded.

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Diagnosis, Treatment, Care, and Support The 2021 update to NAPA makes another bold goal to focus on early diagnosis and presymptomatic concerns. Part of the required AWV, for insurance recipients enrolled in Part B or Advantage plans, includes a yearly cognitive assessment (Zissimopoulos et al., 2018). The cognitive assessment portion of the visit, according to CMS, is one of 12 minimum requirement areas to include. Under this portion of the visit, physicians are to “assess cognitive function by direct observation, considering information from the patient, family, friends, caregivers, and others. Consider using a brief cognitive test, health disparities, chronic conditions, and other factors that contribute to increased cognitive impairment risk” (2023). While theoretically it has failed to be disproven that early detection saves lives, as is the motto repeated on CMS AWV website, in practice AWV prove to unfold differently from stated requirements. Researchers suggest half of study participants self-­ reported attending an AWV and less than 1/3 reported having a structured cognitive assessment (Jacobson et al., 2020; Ayati, 2018). As was mentioned previously, policy infrastructure may suggest one picture of dementia health, and the ground level lived experience of dementia differs.

Support for Carers One of the stated action steps in the most recent publication of the Healthy Brain Initiative, is to “ensure caregivers have information, tools and resources about their vital role and ways to maintain their own health and well-being” (2023). As we can see dispersed throughout the previous sections, the predominate focus of the U.S. approach is on caregiver support. According to Alzheimer’s Impact Movement (AIM), a political advocacy arm of Alzheimer’s Association, “11 million Americans provid[e] unpaid care” for people living with dementia symptoms (2023). In 2018, a national family caregiving plan was signed into law. Under the name of The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act, there are six goals. Three of these policy goals are to “promote respite options for caregivers; analyze financial security and workplace issues for caregivers; and deliver vetted services based on meeting the needs of family caregivers and their loved ones.” According to the ACL, the law specifies the member makeup of the advisory council, stipulating that the 15 voting members are reflective of the caregiving experience, and must include people who receive support. Specifically, it states that at least one older adult who needs long-term services and supports must be a member of the council. I attempted personal communication with the council and did not receive a reply on clarification of which member meets the above noted criterion. It is not clear from the website who on the council fulfills this role. Support for caregivers of people living with living with dementia symptoms is grouped into legislative work with other caregiver types (e.g., youth with

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disabilities). One specific attempt was with the enactment of the 2021 Alzheimer’s Caregiver Support Act, which was an amendment to the Public Health Service Act. If passed, it would have allowed funding for training and support services for families and unpaid caregivers of people living with dementia symptoms. Instead, in 2022, a joint effort by advisory councils for RAISE and Supporting Grandparents Raising Grandchildren Act, released a publication National Strategy to Support Family Caregivers to provide guidance on 500 action steps that state, local, tribal and communities can take in ensuring caregivers “can breathe” (ACL). The needs of caregivers of people living with dementia symptoms can differ from other caregiver types. In addition to simply breathing, we must also encourage access to tools that allow for methods of breathing that support a healthy functioning parasympathetic nervous system. We will return to the importance of this in Chap. 6.

Information Systems for Dementia Some legislative measures have incorporated the importance of implementing increased access to electronic patient information. Care coordination is seen as an area severely lacking within the current model of dementia healthcare (Peterson et al., 2020). This then also begs the question, if expanded early detection efforts are made possible with increased access to patient records (Palazzo et al., 2021; Liss et al., 2021). Use of a unified and coordinated information technology system has been recommended at federal and state levels. Assessing a patient portal is another area of concern (Gleason et al., 2023). Are systems designed in a way that allows for ease of access? Do all necessary parties have internet connection capabilities? Other uses of technology have focused on electronic tracking devices or what some companies call wandering management technology. Researchers have highlighted an absence of people living with ADRD as being included in design and marketing processes and (Howes et al., 2022). Some research has focused on the importance of decision making and autonomy for people living with ADRD who also use technology as a safety measure (Gómez-Vírseda et al., 2020; Olsson et al., 2016; Robinson et al., 2006). Other research has highlighted therapeutic implications for how technology is shaping interventions (Amft, 2018). As has been echoed by researchers, with technological infiltrations into the lives of people living with ADRD, maintaining a focus on the quality of life of people using these devices and services are of greatest importance (Al Shehri, 2022). Some research efforts have begun to use deep-learning-based approaches for tracking changes in hopes of early disease detection (Zhao et al., 2023; Al Shehri, 2022). For example, tracking hippocampal changes, one area of the brain where atrophy is suggestive of AD. There is also the application of predictive technology to use blood tests to predict cognitive functioning (Sakatani et  al., 2020). Similarly, models have been developed where based on speech patterns changes in the brain can be predicted. More specifically, researchers describe how correlative data of speech patterns are used to match disease diagnosis (Luz et al., 2021). Many other models have been developed and

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proposed for use in predicting disease prior to symptom onset. As with any new area, much more research is needed before widespread implementation can occur. Let’s now turn to an overlapping area with technology and focus on research and innovation.

Research and Innovation In 2018, the National Institutes of Health (NIH) offered grant money to study a genetic component of LBD.  Study findings in one major study suggest unique genetic makeup of LBD that appear to be different from AD or PD (Guerreiro et al., 2018). Additionally, NIH stepped up study participant recruitment efforts and established Alzheimer’s and Dementia Outreach, Recruitment, and Engagement (ADORE), an online, searchable database of resources for engagement, recruitment, and retention of study participants. As has been discussed in previous chapters, older racial and ethnic minorities are disproportionately affected by diseases with dementia symptoms (Shaw et al., 2022). Despite a well-established recognition of this, racial and ethnic minorities living with dementia symptoms remain underrepresented in studies, even though federal regulations stipulate inclusion (Zhang et  al., 2017; Robbins & Bernat, 2017; George et  al., 2014; Levkoff & Sanchez, 2003; NIH). Nonetheless, concerted efforts are being made to lessen the gap in research and practice. One way to bridge the gap in study subject participation is reflected in the efforts of the National Institute on Aging funding AD-related Resource Center for Minority Aging Research. Specifically, one funded program is the Columbia Center for Interdisciplinary Research on AD Disparities (CIRAD) at the University of Columbia. Another example is the efforts by NIH to revamp the Mind Your Risks® health campaign to focus more on health equity. The primary audience is Black American men. As can be heard echoing down the research halls, adequate study subject representation is necessary to learn about appropriate risk reduction and early detection methods. In 2022, National Institute on Aging released a series of videos on YouTube, available for free on the internet, that discuss five research areas and advancements made in these areas. The research areas include: biomarkers, caregiving, diversity in clinical trials, genetics, and exercise. One example of success where we can see the impact of increasing funding is on expanding the public’s knowledge on the relationship between exercise and later life dementia development (Chao et al., 2021; Barnes et al., 2015; Zhu & Sano, 2021). Chao and colleagues emphasized the importance of a community approach, where partnering with a local small business who was already livestreaming mind-body group programs to people living with memory loss or dementia symptoms strengthened the outcome of the study

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(2021). Study findings suggest participation in mind-body programs extend independence and quality of life for people living with dementia symptoms. Another leader passionate about investigating the relationship between exercise and brain function is Laura Baker and colleagues. In one study, the team divided study participants into two groups: moderate intensity aerobic training and stretching, balance and range of motion (Baker et al., 2022). After 12 months of participation, global cognitive function was assessed and participants’ functioning did not decline, suggestive of the protective cognitive effects of exercise. One last area of importance are the research requirements of The Department of Defense, Congressionally Directed Medical Research Program (CDMRP). CDMRP is a unique collaborative effort joined from a partnership with the U.S. Congress, military, and public funding. They emphasize the importance of community collaboration in all clinical research dedicated to furthering our understandings of the relationship between TBI and later life dementia development. Community collaboration is specified as inclusive of people living with ADRD, their families and if applicable caregivers. An example of CDMRP is Peer Reviewed Alzheimer’s Research Program.

Summary It is important to note that the above highlighting of government policies and local and national programs are bound to be very different when viewed from the ground level. In other words, the day-to-day operations of services and ensuring people living with dementia symptoms are seen as integral members in the community still require concerted efforts. Sometimes, actual implementation of policies occurs at the state level of governance which can be removed from actual daily needs. With such vast demographic diversity across the United States, policies and programs are going to vary from a state in the southern region to a program in rural Alaska to a major city in the State of California. The important work being done must continue. When it comes to underrepresentation of racial and ethnic minorities in studies, some reasons for underrepresentation may be due to mistrust based on a national historical misuse of information, such as was the case in two significant studies: Tuskegee (Scharff et al., 2010) and Havasupai (Garrison, 2013). National and state policies, along with funding agencies, express an increased focus on ensuring an actual portrayal of diseases with dementia symptoms is represented in the literature, study trials, and the overall dementia health system. Two parts of the system are: (1) ensuring equal access to diagnostic tools and services, (2) adequate support for living well with dementia symptoms.

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Section Summary As is evident from the very brief exploration of dementia policies, programs and procedures, in three countries  – Japan, India, and the United States  – there is acknowledgement of variational influence from cultural perspectives, social welfare values, and healthcare systems (Sun et  al., 2020). Some plans emphasized the importance of creating an inclusive society where people living with ADRD are streamlined into daily life with employment, civil duties, and government positions. Other plans focused efforts on the care and treatment parts of living post-diagnosis. It has been suggested that the protection of human rights should not omit people living with ADRD. Concerted efforts focused on GAP action steps necessitate a recognition of economic, age, and health system disparities when comparing countries. One step to unify countries on a global scale would be to support access to grief-based therapies. ADI urged, in their recent report, the need for post-diagnosis, care, treatment, and support to be recognized as a human right (2022). Before we explore this important post-diagnosis phase, we will turn our attention to the pre-diagnosis process. We’ll explore access to assessment, screening and further testing and discuss the lived experience with this process and navigating these systems. We will also consider the cultural relevance and appropriateness of cognitive assessments. My attempt is to be representative of a range of systems worldwide and yet, it may seem I am operating from a U.S.-centric perspective. Next, we will turn to post-diagnosis phase and discuss some of the current therapeutic approaches and research efforts. This will set the stage for Chap. 6, where we will discuss key ethical considerations in the application of DGT.

Pre-Diagnosis: Assessment, Screening, and Testing As was just discussed, part of the process of assessment within dementia health is recognizing the current conversation, a large part of which is dominated by cognitive assessments. We will discuss the current measures used, keeping in mind that the AWV requires that a cognitive assessment is completed. Interestingly one recent study, conducted by the Alzheimer’s Association, included 1000 primary care providers and 1954 older adults (2019). The report indicated that 94% of primary care providers agreed with the importance of conducting routine cognitive assessments, and yet, according to older adults surveyed, routine cognitive assessments were completed by 16% of respondents. This speaks to a previous note of the difference between policy implementation and lived experiences. In the below sections, we will explore the role of assessments by discussing a few tests, the cultural relevance and competence of translations, screening and areas of consideration in testing, such as problem identification among others. We will now explore the role of assessments in dementia health.

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Assessment As Bart Sheehan, psychiatrist and author of Old Age Psychiatry suggests, the purpose of an assessment scale is to increase the precision of a decision by reducing subjectivity and increasing objectivity (2009). We are going to discuss several cognitive assessments that are routinely administered. We can group them into two categories: participant assessment and informant assessment. Although there are many assessments, we will limit our discussion to the most widely used in the field, with brief mention of a few others. The former category includes the following: MMSE, MoCA or Mini-Cog or MIS, while the latter category includes AD8, GPCOG, or Short IQCODE. As you may already know, many of these are copyrighted and there are fees associated with their use of any kind. This was part of the impetus for developing the SWEET 16 (Fong et al., 2011). Even when a primary care physician can recall questions, this is considered copyright infringement. It’s interesting to note that in the Alzheimer’s Association survey that was introduced at the beginning of this section, the predominate method of delivery was paper and pen. Also, there were three assessment tools that were most widely used: MMSE, Clock-Draw Test, and the Mini-Cog. The two most cited reasons for not conducting assessments were time-­ intensive process of scoring and a lack of confidence in delivering evaluation of assessment (Bernstein et al., 2019). It should be noted that while these three assessments reliably detect major cognitive impairment, or dementia, some researchers suggest they are less likely to detect subtle cognitive changes (Scott & Mayo, 2018). In addition to assessing cognition, there are three other areas typically assessed: physical functioning, quality of life, and behavioral. Second, the physical functioning of a person is also assessed. The Bristol Activities of Daily Living Skills assesses 20 activities (Bucks et al., 1996). It is typically completed by a caretaker, while a person who is thought to be affected by dementia is being analyzed by a physician. Third, it is important to assess quality of life. Some clinicians and researchers utilize the QoL-AD, a standard tool that has been adapted to reflect measurement of disease-specific properties (Logsdon et al., 1999). Fourth, a behavioral component of dementia is assessed. The Neuropsychiatric Inventory (NPI) is typically used to assess BPSD (Cummings et  al., 1994). In ­particular, it measures what is referred to as delusions, agitation, depression, irritability, and apathy. Two other commonly administered tests for gauging behaviors are The Cohen-Mansfield Agitation Inventory (Cohen-Mansfield, 1986) and BEHAVE-AD (Reisburg et al., 1987). This last area of assessment is aimed at gauging changes in behavior since presumed onset. Let’s discuss some of the particulars of two participant assessments (MMSE and CDT), what brain functions are assessed and some limitations with these tools. We will then understand a bit about one informant assessment (AD8). We will then discuss the most widely studied psychometric test (MoCA). We will conclude the assessment section by exploring the significance of cultural relevance and competence.

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Mini Mental State Examination (MMSE) and Clock Draw Test (CDT) The MMSE is focused on detecting changes in orientation, attention, memory, language, and visual-spatial skills; although, it does not measure executive functioning. This assessment having been developed in 1975 for hospitalized people (Folstein et al., 1975). By far, this is the most widely used assessment in clinical practice and research. There have been noted some errors influenced by: ethnicity, age, education level, and language (Wu et al., 2023b; Matallana et al., 2011). Due to this being copyrighted, there is a cost with each administration. There is even an adaptation of the test given by telephone which has even been validated. Researchers administered the test to 100 people from an outpatient geriatric assessment center and determined this instrument to be valid and reliable for screening for cognitive impairment (Roccaforte et al., 1992). Administering an assessment by phone can support people who have limited access to transportation or other barriers that make it challenging to return to a clinic for an in-person assessment (i.e., geographic proximity between home and clinic). The MMSE has been regarded as a construct with high sensitivity and specificity. The clock draw test (CDT) is a simple, straightforward activity that asks a person to complete four tasks: draw a clock with the numbers, place the hands at a particular time (Shulman, 2000). There is one point each for including all numbers on the face and another point for placing them in the correct position on the face of the clock. The cognitive functions measured on this test are as follows: spatial orientation, abstract thinking, planning, concentration, executive, and visuospatial skills (Aprahamian et al., 2009). The CDT is often used because of its brevity and low technicality. The CDT can be problematic because it only measures a very narrow portion of cognitive dysfunction, with similar cognitive deficits in people affected by strokes. Now that we have a very brief understanding of two participant assessments, let’s understand a bit about an informant assessment by exploring the AD8. AD8 The main claim behind informant-based gathering of information in the dementia diagnosis process is that an informant is a more reliable source than the individual living with possible cognitive impairment (Hendry et al., 2019). The AD8 (Galvin et al., 2005) aims to measure memory, orientation, and judgment by asking a reliable collateral eight questions with a yes or no answer. Based on research, it has been determined this brief instrument is reliable for detection of cognitive impairment (Taylor-Rowan et al., 2020). At the same time, it’s important to note that in instances where the informant is determined to not be a reliable source, then the standard protocol is to treat any underlying conditions and reevaluate the person in 6 months. An assessment by itself is insufficient to diagnose a dementing disorder. It’s important to note, that while we discussed just a few assessments, there are many other assessment tools that can be employed. Take for example the Memory Impairment Screen (MIS) or the Trail Making Test A and B. Although trail making

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tests are very simple, they have been hypothesized to reflect a wide variety of cognitive processes including attention, visual search and scanning, sequencing and shifting, psychomotor speed, abstraction, flexibility, ability to execute and modify a plan of action, and ability to maintain two trains of thought simultaneously. Now let’s turn our attention to the most widely studied cognitive assessment instrument: Montreal Cognitive Assessment. Montreal Cognitive Assessment (MoCA) The MoCA is widely studied, perhaps due to the most variations to meet the needs of the broadest of populations. For example, to assess some cognitive functions of people who are illiterate or have minimal education, the MoCA-Basic, has been a validated instrument (Julayanont et  al., 2015). Also, two other versions: MoCA Hearing (MoCA-H) and Visual Impairment (MoCA-V), have been developed to evaluate subjects who are hearing or visually impaired (Dawes et al., 2019). The MoCA Audiovisual is intended to be administered via videoconference, or another remote offering is the Telephone-based MoCA (T-MoCA) (Nasreddine et al., 2005). And the briefest version, the 5-minute MoCA was developed to meet the needs of brief administration constraint (Wong et al., 2015). It’s important to note what is being assessed with tools. For example, a recent study of older adults in Hong Kong found the 5-minute MoCA is best at detecting mild cognitive impairment (Andersson et al., 2021). Additionally, it is important to maintain standards of validity and reliability when translating instruments. Cultural Relevance One item on this assessment is a 3-d object that test subjects must reproduce, corresponding to spatial functioning and constructional apraxia. The object in the original MoCA does not translate when administered to subjects in Egypt. Parts of cognitive functioning intended to be measured are missed. Therefore, in the Egyptian Arabic Version subjects are instructed to reproduce a parallelepiped (Salehi et al., 2016). Thus, the mark of cultural relevance is maintained when not only are words translated, using professional linguistic translators, there is also inclusion of healthcare professionals and people to whom the test is being administered involved in the translation process. These steps help to ensure conceptual translation of the instrument. In another study of subjects in rural Tanzania, an adapted version, the Kiswahili version of Montreal Cognitive Assessment (K-MoCA) was found to be both reliable and valid among the 259 community-dwelling older adults (Masika et al., 2021). As mentioned briefly previously, older adults from low- and middle-income countries are sometimes illiterate. Thus, tests that rely on reading instructions would not begin to assess the functions intended to be assessed. Even when literate, it’s important for version to be culturally appropriate. Take or instance, the MoCA, where

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individuals are asked to repeat the following words: “velvet,” “daisy,” “church.” These three words are culturally foreign to older Chinese adults even after being translated. There are nine versions of the Chinese MoCA accounting for regional difference in Beijing, Hong Kong, Singapore, as well as language variations (Hong et al., 2022). An example of variations are some versions change the word recall to “city” and “puppy” (Wong & Mok, 2018; Dong & Quah, 2010; Wang & Xie, 2006). Meeting the cultural needs of people are vital and necessary for ensuring early detection methods are being employed with the greatest care and precision. Assessment Summary While these tests measure what they say they are measuring, they do not provide a whole picture of a person who may or may not be living with dementia. The apparent commonality in these assessments is they are screening tools and they are focused on cognitive functioning. They are not a diagnostic measure. Furthermore, study after study suggests dementia is often misclassified when using brief cognitive assessments, largely due to test-specific biases. For example, higher levels of education can generate false negatives (Ranson et al., 2019). It is also important to consider other factors such as where a person is living, which some studies have suggested false positive results in brief assessments when test subjects live in LTCC. With a very broad understanding of the role cognitive assessments play in dementia health, now we will turn our attention to other areas of significance in the pre-diagnostic phase: grief screening and the role of overall testing. We will discuss two reasons for screening and four benefits of testing.

Screening There are several reasons to screen people on the quality of attachments and we will discuss two reasons: increasing dimensionality of grief-dementia experience and individualize treatment methods. As was mentioned earlier, the value and quality of the attachment in the mourner-deceased relationship is the principal determinant of a person’s character and depth of grieving. We could harken back to the significance of Bowlby’s work and his development of what he called “internal working models” that we use to understand the self and the people around us (1969). These models also inform and shape future relationships. As such, complicated bereavement reactions are a result of an insecure attachment relationship with the deceased. It is important to note, the mourner-deceased relationship can sometimes refer to the mourner as the current self who is living with ADRD and the deceased self being the former self. At the same time, it’s also important to gauge the attachment styles engaged in other losses. Some key questions to consider in the screening process are as follows:

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How secure would you say your formative relationships were? Was there abandonment, destruction, neglect, abuse, trauma or other occurrences that you think might contribute to insecure attachments? Now, as an adult, what types of attachments would you say you have with people in your life – let’s break it down to three people who you consider to be close. Taking this inquiry a bit deeper, Erikson suggests probing, “How well has a client achieved intimacy in these relationships” (1963)? Taking a retrospective approach to screening attachment styles can also illuminate current physical conditions. The questions regarding abandonment and the like, should only be asked after offered by a participant. If a participant doesn’t introduce this information, it might not be appropriate to include this at this stage. A second reason for screening and understanding participants’ attachment styles is to individualize treatment methods. For example, people with secure attachment styles tend to not feel overwhelmed by their feelings of continuing a relationship with the person who is deceased (Shaver & Tancredy, 2001). Techniques such as encouraging a bond by talking with the dead person or discussing memories or even utilizing the perceived moral compass of the dead person to guide one on their path is a natural concomitant of secure attachment styles embedded in the mourner-­ deceased relationship. In the context of people living with dementia symptoms, verbalization of having a conversation with someone who is no longer living is charted as symptomatic of hallucinations. And certainly, having a conversation with a previous version of one’s self is beyond suspect. Thus, when a person living with dementia symptoms audibly has a conversation with someone who is dead or with the diagnosed other, sometimes the approach is to label this BPSD and manage this symptom: redirection, medication, distraction, or something else. Rarely is the something else to take an approach that encourages this continued conversation. We will see in Chaps. 7, 8, and 9 how experiences with both dementia and grief can be altered if the person living with dementia is not only permitted to continue this conversation, yet they are also afforded the security by a third-party who models a secure attachment and facilitates and encourages the maintenance of a strong bond with the person who has died – the original person with whom they hold a secure attachment style relationship. A caveat with implementing this technique is that the foundation of a secure attachment must first occur. Additionally, understanding attachment histories can create space for autonomy – leading to the beginning of the process of grief integration.

Testing Countless research efforts have suggested just how important early detection of dementia symptoms are. Additionally, when applying a grief lens to the field of dementia health, assessing for complication or otherwise unmetabolized traumas

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and losses is important to overall health outcomes. Butcher concurs testing can yield assistive information in identifying problems and appropriate selection of treatment plans that parallel participants’ personality (1997). Applebaum expands on these benefits to also include the creation of a reference point that can be used throughout the therapy process (1990). Maruish offers four categories into which psychological testing can be beneficial (2002). They have been slightly reworded to fit the DGT model and are as follows: problem identification, problem clarification, participant characteristics, and monitoring treatment progress. For the purposes of this section, I will discuss them within the context of psychometrics used in the field of dementia health. Problem Identification People cross paths with a professional capable of screening for dementia symptoms in multiple ways. Sometimes, a person expresses concerns. They notice changes within their body and they bring this up to their primary care doctor. Sometimes, during an AWV, a person’s primary care doctor, when conducting cognitive assessments, expresses concerns and suggests further diagnostic testing. Other times, a person in one’s immediate world expresses concern. Typically, when a person contacts a professional, there they are aware of their reasons for contacting them. In other words, they’re able to articulate what prompted their initial inquiry. I find that people truly know themselves better than anyone else. Sometimes, it is the case that other characteristics, confidence for example, may be latent. Nevertheless, an awareness of internal changes is known. Although, there are situations where a person, for sociocultural reasons, stigma or unknowns, may not desire to share the specifics of their concerns. Problem Clarification The use of psychological tests allows not only for identification of the primary concern, there may also be other concerns that are overlooked or unrecognized. When it is suspected that a person is presenting dementia-like symptoms, a typical battery of tests are completed. Screening for dementia is typically focused on measuring a particular aspect of a person: cognition, physical functioning, quality of life or behavior. Testing for dementia can occur by collecting data collaterally and directly from a participant. If a professional is interested in testing cognition, then, as we discussed in previous sections, assessments such as the MMSE or the Abbreviated Mental Test Score are sometimes conducted (Qureshi & Hodkinson, 1974). These measure a person’s orientation, registration, recall, and concentration. With brevity adding to their popularity, it should also be recognized that low positive predictive values suggest the use of a secondary screening. All of these tests mentioned thus far are screening tools and should not be confused for diagnostic measures.

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The second benefit of using specific valid and reliable instruments, is to be able to use a set of reliable normative data against which individual test results can be compared and contrasted with others presenting similar symptoms; thereby allowing a professional to receive problem clarification. It is important to remember that when there is a person for whom others hold a concern or suspicion that they’re presenting dementia-like symptoms, that the person is multi-dimensional. The identified person has a history including long-standing formations of coping mechanisms, relationships defined by a variety of attachment styles, all of which converge in the present moment and combine to contribute to the complexity of the current situation. Thus, it is vital to fully grasp the complexity of a person in order to be able to adequately develop an effective treatment plan. Participant Characteristics Woven into this web of problem identification and clarification is a strand of strength recognition. As Maruish posits, “The identification of characteristics that can serve as assets or areas of strengths for [participants] in working to achieve their therapeutic goals” (2002). Most specifically, having as full of a representation of a person as possible can support both professional and participant in goal setting and movement through the stages of change by appropriately selecting therapeutic techniques that support the person where they are at this moment and in their environment. Monitoring Treatment Progress A fourth benefit to collecting data from testing and retesting is to be able to apply an objective lens to the pre-diagnostic process – one that can be considered a subjective process – one of personal discovery and exploration and enlightenment. Further, participants appreciate a recognition of where they are at the present moment in comparison to how a previous version of themself may have handled a situation. For some people, narrative versions of growth do not have as resounding of an impact as do raw numbers. For example, administering the SF-12 in the intake session can offer both collaborators a baseline. If this same instrument is utilized every three months, then a collection of data begins where monitoring treatment progress can occur. We have discussed Maruish’s areas of psychometric benefit to include four areas: problem identification, problem clarification, identification of important participant characteristics, and monitoring treatment progress. Included in this discussion has been dementia-specific testing and assessments that are considered standards in the field. It might be interesting to note, that the standard assessment, screening and testing processes with cognitive functioning tend to focus on executive function, memory, spatial reasoning, and the like. At present, none consider assessment of emotional experience and emotional expression, which are also cognitive functions. Dementia health might consider incorporating other screening, assessment and

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testing measures in order to get a fuller representation of a person, such as attachments and grief. Although we started to move in the direction of therapy process, with Maruish’s four benefits to testing, we will now expand on this within the context of post-diagnosis. In the below sections we will discuss a layer of death that can play a role in a person’s diagnosis process, as well as explore therapeutic orientations to making as transparent as possible these multiple layers: death, dementia, loss, and life.

Post-Diagnosis: Death, Therapy, and Living Birth suggests death. The fragility of life is tenuous and uncertain. At some point one is convinced of the presumed stability and certainty of life, to the extent that one believes as truth a continued unflappable existence. When illness descends, human suffering is magnified, and the process of questioning long-standing truths begins for some. As Kübler-Ross reminds us in Death: The Final Stage of Growth, a recognition of life’s finiteness allows one to shift focus from external to internal, “focusing on what is truly important and meaningful” (1975). The manifestation of illness takes on many varied forms for each person. For example, with a diagnosis of dementia, counselors must be attuned to three areas: the possibilities of dying, the seven sensitivities, and sensitivity to self.

Possibilities of Dying Although the possibility of dying is present at birth, the harsh reality of the delicate nature of life often is not acknowledged until questioned. Questioning all too often occurs when one is faced with a diagnosis. And yet, with a diagnosis of dementia, many facets of the grief process remain in the dark and silenced. I am not familiar with therapeutic processes that allow space for a person diagnosed with dementia to process or give voice to past, current or future losses. How would the experiences of living with dementia be different if during assessment and consultation the diagnosed person were asked a series of questions: In what areas of your life do you feel the greatest pooling of sadness? What activities and events do you anticipate you will no longer be able to participate in? Before we delve into the particulars of the seven sensitivities, we can draw on Sudnow’s concept of social death to understand treatment of people living with dementia. He observed interactions and an overall philosophy of life where “family and staff often treat many comatose patients, though technically living, as if they were dead” (1967). We can see similar social exchanges with people living with dementia symptoms. Sometime conversations occur about a person and their health and wellbeing with them in the room yet absent any involvement of the person or considering their valuable perspectives. This is one way people are objectified.

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While objectifying people is one option of interaction, there are other guiding principles we can consider.

Seven Sensitivities To counter the social death described above, rather than being dismissive, Doka suggests seven sensitivities can guide our practice: the whole person; the problem of pain and discomfort; open, honest, and mutual communication; the individual’s autonomy; the individual’s needs; cultural differences; and treatment goals (Doka, 2014). For the purpose of this section, let’s focus on two: the whole person and the individual’s autonomy. Importance of Whole Person Within a medical model of understanding human behavior, it is at the moment of diagnosis, when a person’s given name is traded in for the illness. For example, conversations about Nancy become less about Nancy as a person and more about her behaviors or disease traits. As is widely understood in the dementia literature, we must always separate out the person from the behaviors. And yet, it may be beneficial to integrate them. There are clues hidden in some people’s behaviors that could be moderated by grief therapy. People living with dementia symptoms are people with rich histories. When we reduce a person do an illness, we strip one of humanity. Doka reminds us, “Life threatening illness is a multifaceted crisis, one that affects an individual physically, psychologically, socially, financially and spiritually” (Doka, 2014). Holistic approaches reinforce the context of illness occurring within life. Autonomy Life-threatening illness demands dependency. With a locus of control often being external, it is vital to one’s overall wellbeing and process of recovery (even when death is a state of recovery) to maximize individual autonomy (Potier et al., 2018). There are countless opportunities throughout the process of living with dementia symptoms where choices must be made. Allowing space for people to make their own decisions, for their own life, is important if we are valuing and respecting autonomy. One role of professionals is to ask questions and support the process of inquiry. It is not an absolute necessity to do work in life that sets the stage for dying in a state of psychoanalytic grace (Shneidman, 1982). We also mustn’t judge or neglect areas of participant inquiry. Rather, we can serve as a gentle river upon which people are floating. We might point out a rock ahead and ultimately, it is up

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to the person to decide if they want to navigate around the rock or smash into it. As the river consistently bends and flows, so too must we stay the course.

Sensitivity to Self Just as important as it is to encourage participants to integrate the illness into one’s life narrative, it is of equal importance to acknowledge the role losses play. One key for maintaining psychological equilibrium, for both collaborators, is moving along a continuum of illness recognition: from repulsion to disgust to acceptance to appreciation to celebration. The task of completing timelines can be an effective tool for understanding the ways in which illness and life interact with one another (Jarrett, 1994). Offering this technique, when appropriate, can support a participant with grasping a fuller understanding of the illness and areas where there is integration. Roberts claims that when people feel an inability to process “the crisis of death” then all preexisting defense mechanisms collapse (1988). I counter this by offering a reframing of navigational mechanisms as strengths rather than defenses. If instead of relying on crisis theory, one that emphasizes a major shifting of roles previously played, turn toward performance mastery as an assessment and tool to emphasize previous victories, then anxieties and uncertainty may lessen. Relying on previous successes may moderate a current state of unpredictability. The process of receiving a life-threatening illness holds dual potential for being devastating and empowering. With the support of a professional drawing from a combined strengths-based approach – tapping into participant’s strengths to active integration – and trauma-informed approach, a participant is then able to hold both states safely and simultaneously. Therapists can acknowledge the magnitude of losses – previous, current, and anticipatory – by tuning into three areas: the possibilities of dying, the seven sensitivities, and sensitivity to self. We will see a return to some of the previously discussed areas in Chap. 6. For now, let’s understand a bit about therapeutic orientations for untangling dementia and grief.

Therapeutic Orientations With acknowledgement of a layer of the death process inherent in a diagnosis process, now we can turn toward exploring therapeutic approaches intended to offer support with grief while also living with dementia symptoms. Specifically, we will look at Gestalt, integrative, contemplative, existentialism, feminism, Adlerian, cognitive behavioral, rational emotive, and person centered. We will shift our focus from therapy toward continued living by discussing the historical roots of attachment theory, the role the self-other dyad plays in living with dementia symptoms and set this against a backdrop of grief.

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Gestalt Unlike other psychotherapeutic techniques, with Gestalt therapy, there is a leveling of the role a therapist plays (Amendt-Lyon & Brownell, 2016). Rather than taking a purely objective position (particularly where the therapist is an expert and knows what the client needs), the therapist attempts to truly feel and experience what the participant is thinking – and the ways in which one is thinking about their thinking. In this sense, the major difference with Gestalt therapy is an increase in awareness. There are three mechanisms by which a participant increases their awareness: contact, conscious awareness, and experimentation. Let’s explore these three concepts within the context of grief counseling. Additionally, I will discuss the applicability of Gestalt techniques to DGT. Contact When processing grief, a person may not be in touch with what is in the present moment. The concept of contact emphasized in Gestalt therapy may be a necessary first step to recognizing and owning a loss. Once contact is established, and it may need to continually be reestablished, then a participant is anchored in the present moment, rather than being tethered by a long string strung far into the past or into the future. Growth and healing occur in the present. A way contact may be established is by extricating from a participant’s sharing of an event 5-years prior specific elements that have an immediate impact on the present moment. Put differently, a therapist may probe a participant to locate in their body feelings and sensations that arise within, when they share this version of their narrative. Body sensing is a form of contact. Being able to identify where in the body a participant feels the manifestation of their narrative can lead to the possibility of exposure of other emotions or even greater overall awareness. Another component of body orientation is a person goes from living their life, receiving a diagnosis and then others behave and interact in ways that support this diagnosis. When providing a supportive and nonjudgmental environment, encouraging people to locate in their body where they are feeling what they are describing at the present moment can be encouraging and bolster a person’s agency, sense of self and worth. When so much of a person’s world feels out of control, locating sensations in the body can be a way to reinforce or reestablish an internal locus of control. Conscious Awareness Conscious awareness allows a participant to accept what is occurring in the here and now and the ways in which the current environment and the participant are in a dynamic dance, thereby affecting one another. Moving from awareness and

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acceptance to appreciation for the current situation requires a participant to be able to articulate needs or wants and connect with the current state of feelings. At a time of loss, a participant may be confronted with many conflicting and varied emotions. These needs, emotions, and wants land on a continuum of awareness. Just as it is important to be aware of what is landing along this continuum, it is equally important to be aware of what is being interrupted from entering a field of awareness or avoided completely. It may be appropriate to incorporate the use of the empty chair technique to tease out specific needs, wishes, wants, and expectations. Experimentation Experimentation is used to magnify what is in a participant’s present awareness. Unlike behavior modification modalities, the main goal of Gestalt therapy is not to change a state of being or thinking, rather to articulate a collaborator’s awareness more clearly. Experimentation may enhance or shift emotions or encourage a participant to look at a situation differently. One important mechanism in experimentation is a participant’s thoughts embedded in and bound by their environments. Experimentation capitalizes on the role of individual’s thoughts within the context of their environments. As has been suggested, there is no self without the other. The concept of organismic self-regulation lends a theoretical perspective on human behavior. Take for example a memory care space where 14 people reside and vie for space and a sense of belonging. Each person negotiates with others to be in contact with what is actually happening in their environment. In a space where so much is done for people, I sometimes witness people questioning their own behavior and even thoughts. I offer a yoga class in a memory care space and a woman who lives there shared with me after class one day, “Every day is the same and same and more same of yesterday. I know it’s not just me making this up and keep living the same day over and over. Even if I try to make different choices just to make it a little different, someone tells me that’s not what I like. Maybe I don’t even know what I like anymore.” A person who attempts to create variation within a stagnant environment exhibits signs of intelligence, and in the context of Gestalt therapy techniques, creative adjustment. This maneuvering and attempt to manipulate the felt experience within one’s environment suggests a degree of health. The idea of creative adjustment cascades from the notion of people being growth oriented and sets the stage for people to problem solve, use their resources and make connections that serve them within their given environment. These become solidified and the transient state of options of polarities take a back seat, while dichotomies step into the driver seat. We can use the context of memory care centers, where many decisions are made for people, to explore the interesting roles polarities serve. The natural flowing of creative adjustment is interrupted and figures and grounds are unable to shift according to needs. This is where BPSD surfaces, one form being resistance. In a Gestaltian understanding of resistance, a person may use resistance as a form of agency. If a person refuses to eat, then they are making a choice and are exerting their agency on

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their environment. Gestalt theory posits that a key to this exchange is an awareness on the part of the participant of their abstaining. In the event their awareness is focused and open to receiving this information, then this suggests they’re cognizant of their own actions and proprioception.

Integrative Adherence to a single school of thought is blinding at best and in other cases can be quite damaging. It’s important to work with individuals from a multiple perspectives or multimodal therapeutic framework in order to meet their varied needs. Not a single person seeks the support of a professional in sorting through the complexities of any of life’s areas by viewing the event or scenario from a single perspective. To adopt a single therapeutic perspective is the equivalent of seeing the world through one-dimensional glasses. Therefore, it should be clear that it is most advantageous in serving many different types of people to promote a multi-systems therapeutic approach. Further, it is vital in meeting the needs of each person that we select a therapeutic style appropriate to the person and the documented evidence of treating a collection of symptoms, rather than solely focusing on the later. I will discuss the strengths and weaknesses of four main arms of integrative therapies – technical eclecticism, theoretical integration, common factors, and assimilative integration – and how they may be useful in the context of DGT. Additionally, we will consider six participant characteristics: diagnosis, stage of change, coping style, resistance level, patient preferences, and culture. Last, we will discuss the incorporation of specific components of integrative therapies into DGT. Treatment methods are not developed in a vacuum. Rather, each has rich histories that inform the application of the techniques. Integrative therapists who adopt a technical eclecticism perspective, focus on procedures from a variety of therapeutic systems without focusing their attention on the theoretical underpinnings of these therapeutic systems. I am leery of borrowing a therapeutic technique and divorcing it from its theoretical perspective. Theory informs technique. The efficacy of technique without theory is ephemeral. Let’s take for example an 81-year-old female who feels disempowered after her husband of 62 years dies. If we operate from a feminist therapeutic perspective, where we invite the person to take back control what was given to their husband in the beginning of their marriage, and assign homework of exerting power in social situations, then it could seem like a cheap import if we simply assign this type of homework outside of the context of the theory from which it was derived. Conversely, theoretical integrationists rely heavily on the theoretical foundations of two or more therapeutic approaches by seeking to combine theories from multiple schools of thought to create an even greater perspective. Instead of simply drawing from A to B, integrationists pull from A to B to create C, holding that C is more efficacious than A and B alone. For example, as we will see in Chap. 6, DGT integrates cognitive behavioral theory and feminist theory to create a therapy model that

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is more effective in sum than it is in the reduction of its theoretical parts. We can use one participant characteristic, stage of change, to illustrate the effectiveness of this therapeutic approach. On one hand, we have cognitive-behavioral theory that suggests thoughts influence the way we feel and hence inform our behavior regarding change. On the other hand, is feminist theory that suggests change originates from within, a reclaiming of a sense of power. If we borrow from these two theoretical perspectives and then also create an even greater theory of capabilities, we can see from a theoretical integrationists’ perspective where a person in the contemplation stage is able to focus on their internal strengths as the impetus for change. There are multiple factors that contribute to successful outcomes in therapy. Some therapists approach the process of change from the perspective of common factors inherent in all therapeutic models. By focusing on the overlap rather than the distinguishing factors between therapeutic approaches, say for example the importance of therapeutic alliance, some therapists posit it is this very factor that is the impetus to change for participants. In other words, all therapeutic approaches emphasize the significance of a therapeutic alliance, regardless of the degree of strength, in bringing about change. It’s a moot point, from a common factors perspective, to delineate the degree of importance of therapeutic alliance when this is a consistent strand across all psychotherapies. Assimilative integrationists align themselves with a single therapeutic perspective and when appropriate borrow techniques from other disciplines. While on the surface this may seem to truly meet people where they are, operating from a person in environment perspective, I too see where it can seem theoretically and technically wishy-washy. The flexibility that this approach lends is wonderfully creative and may serve the purpose of meeting participants’ varying resistance levels, however adherence to a single therapeutic perspective renders the therapy approach incomplete. Techniques need to be grounded in the theory out of which they are born. Otherwise, again, we have a situation where cheap exportation is happening. As we will see in Chap. 6, DGT begins from a perspective of strengths, capabilities, and restoring mind-body homeostasis. One main take away from this section, is the emphasis that integrative psychotherapies place on the individual as being at the center of the therapy process with shifts occurring organically and originating from within the individual. The work we do with people living with dementia symptoms must begin from a place of recognizing the high likelihood that people are feeling as though much is being done to them.

Contemplative The main assumption of contemplative therapies that not only sum up this psychotherapeutic approach, yet also underly much of psychological pathology and physical illnesses is as follows: the typical state of the human mind is one that is uncontrolled, underdeveloped, and dysfunctional. Another take on this perspective is the untapped potential in all humans. Further, this therapeutic approach lends itself to a therapist operating from a fellow traveler stance, where perhaps the

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therapist has made the voyage previously (in the sense of being committed to his, her, or their own self-exploration, reflection, and discovery). We will discuss the strengths and weaknesses of contemplative psychotherapies regarding consciousness, identity, motivation, development, and higher capacities. We will conclude by exploring the incorporation of this approach into DGT. There are multiple facets to grief and one’s degree of consciousness plays an integral role in the process of integrating loss. There may be components to our loss that lie outside of our frame of awareness. According to contemplative psychologies, we are able to access altered states of consciousness through a variety of means, such as yoga postures (asanas), breath extension (pranayama), or meditation (dhyana). Contrarily, contemplative psychologies suggest that our waking state is less than optimal for day to day living, let alone for processing the truest depths of our sorrow in a time of loss. And yet, integration occurs when we are able to recognize that our suffering or sorrow is not ours alone. Suffering connects us to other humans. This is an essential aspect of being human. In a process of recognition that others suffer, lose dear loved ones and feel sad, we may then accelerate our healing. Thoughts, images, and emotions are in a constant state of flux, ebbing and flowing, here and then gone. Similarly, according to contemplative psychologies, our identity is an illusory construct. As such, we could say that grief is synonymous with this view of identity. We defend relationships and uphold images of times past to soften the jagged edges of loss. In so doing, according to this school of thought, we create loss and are victimized by it. If, however, we allow ourselves to be privy to this recognition, then we can see how all humans participate in the victimizing-­ revictimizing cycle and instead allow our identity to be rooted in compassion, love, and equanimity. Within the tradition of yogic science we can hear echoes of Maslow’s hierarchy of needs, higher motives (self-actualizing, self-transcendence, and selfless service) as an essential part of being human, and suffering occurs when we ignore these needs or motivations. If grief is experienced at a time when a person is ignoring these higher motives, then the emotions that spring out of the loss are identified as the source of unhappiness. The deeper concerns of meaninglessness or alienation masquerade as anger and sadness. From a developmental perspective, the transpersonal or postconventional stage bears ripe fruit in moments of grief. Loss can be a transcendental experience. Loss can offer a moment of awakening. This school of thought hones in on the importance of the deep changes occurring at the transpersonal level – moving beyond the mundane occurrences of daily life. There is an inherent rawness in grief that can be transformative and sometime nourishing. A recognition of our higher capacities, particularly in moments of bridled awareness, can unfold into a propensity for even greater capacities. In other words, if we are open to the possibilities of untapped emotions, cognitions, and experiences, then when confronted with moments of growth wrapped in a package of grief, then our go to might be appreciation, joy and calm instead of anger, denial, and fear. This school of thought suggests that the more we practice and align ourselves with the former rather than the latter, the former becomes our automatic response.

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Existentialism Existential psychotherapy is a lens through which to perceive the full range of human experiences vis-à-vis freedom, isolation, meaning, and death. From this therapeutic position, it is believed that surface symptoms (e.g., anxiety, depression, etc.) are rooted in much larger issues of suffering. Although no amount of empathy or positive unconditional regard will annihilate Yalom’s ultimate concern with the strength of the therapeutic relationship has the potential to soften the sharp edges of a participant’s anomie, loneliness, and grief (1980). Additionally, the depth of the therapeutic alliance has the power to magnify meaning, creativity, and love. Put differently, understanding the full spectrum of human beingness demands bipartisan recognition of the subject-object positionality. Each person is circumstantially objective and governed within these boundaries by their subjective values. Similar to person-centered therapy, existential therapists are non-directive in their approach, although to a much lesser degree than the former. One of the benefits of this model is that it lends itself to meeting each participant where they are at each moment as they enter therapy each time. However, this can be a point of frustration for some participants. Participants who seek structure and guidance might find this approach challenging and too willy-nilly to facilitate self-discovery. For example, if a participant who is grieving a loss is already feeling emotionally overwhelmed with sadness, regret, and loneliness, then creating a vast openness of space for exploration may be more hindering than healthy. There is a balance between knowing when to let the river flow freely and when to serve as reinforced terrain along the riverbanks or even create dam support for that matter. Existential psychotherapy, as a frame of reference, is particularly useful in the realm of geriatric psychology, for its comprehensive view of a participant as human, rather than reducing an individual to behavioral or mechanistic qualities. Within the field of geriatrics people are often defined by their symptoms. Moreover, in the institutionalization of people affected by dementia, people become objects to be maneuvered through the rituals of daily living. Research and clinical discussions on BPSD is the quintessential reason why an emphasis on humanness is needed now more than ever. The process of change is a cornerstone of any therapeutic relationship. Beyond the awareness we apply to the practical steps of ensuring a strong therapeutic alliance, the narrative we tell ourselves about a participant’s self-narrative – how we conceptualize a participant – is equally worthy of our awareness. We owe participants’ this diligence. Taking an honest inventory of our epistemological assumptions is a living process – querying ourselves often: “From where did this knowledge originate? Who is excluded if I promulgate this knowledge?” “How does this knowledge support a participant’s journey?” We discussed briefly the “how” of the process of change, from an existentialist framework, now we will turn to feminism including a recognition of how sociocultural and sociostructural system impact the lived experiences with dementia symptoms.

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Feminism As we will discuss shortly, one tenant of feminist therapies is an emphasis on unique internal perspectives of the ways in which experiences dictate one’s reality. The purporting of autonomy despite variations of human capabilities and access to resources, can be balanced with combinatory attention to other feminist principles: systems of oppression and empowerment. Again, we can draw from Allport’s wisdom in that no one person who is diagnosed with dementia experiences dementia like any other. When a person is diagnosed with dementia, it is not only the person in the present moment who is diagnosed, the person brings with them an understanding of historical legacies on what it means to “have dementia” and this knowledge influences their lived experiences. The sociocultural experience of receiving a dementia diagnosis can be informed by a lifetime of highly influential experiences. From a sociostructural perspective, we must acknowledge a relational privilege-­ oppression shift at the point of diagnosis. A person can rapidly progress from being a valued human with intersubjective lived experiences to being relegated to a world of anonymity, or worse, objectivity. Is it possible to interrupt this progression? In our current healthcare system, what needs to change? The sociocultural and sociostructural impacts of a diagnosis of dementia are felt at the individual level (micro) and reinforced by our institutions (meso and macro). Adopting an individualized approach to dementia health stands in line with the components necessary for an evidence-based approach, one that is informed by multi-source evidence. In other words, beginning with the person and then asking what relevant research is available to serve the greatest outcome while collaborating with that individual. Some sources of data collection may come from quantitative research about the presenting problem, qualitative research about treatment application, research of other people who present similar case examples, as well as a professional’s own experience. For the brevity of this section let’s discuss three as each relate to evidence-based dementia practices: emotional-behavioral congruence, autonomy, and self-actualization. Emotional-Behavioral Congruence With feminist’s insistence on pluralism, one mechanism of change may be measured by a participant who presents with minimal emotional and behavioral expressions. At some later point, when the participant expresses what is perceived as emotional-behavioral incongruency, it may be beneficial to acknowledge this expression by using specific rewarding or strengths-based language, rather than labeling the expression BPSD. The process of integrating thinking, feeling and action lends itself to supporting “people who interact rigidly and in a ritualized manner with their environment” as is often witnessed by people who live in memory care spaces (Nelson, 1988). Human flourishing can cease when individuality is undermined by institutional policies.

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Autonomy A feminist perspective on dementia grief maintains an emphasis on “strategies to develop an individual’s personal choice and autonomy” (Smebye et al., 2016). If people are influenced by the institutions of which they are a part, then is autonomy what we should be focusing on? We could draw on MacKinnon’s theory of dominance feminism to frame how people living with ADRD have the capacity for autonomy and yet because they exist in an oppressive institution (memory care or some societies) they do not exercise their autonomy (2005). If, as has been suggested by Marx and Engles, one goal is to not only understand the world but to also change it, then it would seem to be a more compelling action to create a world that values contributions from across the cognitive continuum (Marx & Engles, 2015). As we will see in a below section, this is the case for government structures and policy development in some prefectures in Japan. Self-Actualization A necessary precursor for self-actualization is for participants to develop or strengthen a positive self-concept. In a Rogerian sense, one way of engaging in this process is to accept or even appreciate the range of feelings expressed by people affected by dementia, acknowledge one’s own feelings that some behaviors are undesirable and communicate full appreciation for the person as a whole being (1951). This reasoning is borrowed from his example of the parenting relationship. I do not believe labeling some behaviors as undesirable in the context of dementia is helpful. Instead, it seems more fitting to create an environment where people feel valued and appreciated. What needs to be different in our world to allow space for this to germinate? We just discussed the therapeutic process through the lens of feminism. Our exploration of this therapeutic orientation allowed us to look more closely at three evidence-based concepts: emotional-behavioral congruence, autonomy, and self-­ actualization. We will now shift our attention to an Adlerian approach.

Adlerian Adlerian psychotherapy (AP) holds at its core a person shall be viewed as a whole being in the context of their social web. Further, allowing space for the exploration of perceptions of place within three areas (purpose, social/community, love), referred to as “life tasks,” is of importance to Adlerians. To clarify, purpose can be in the form of work, or occupation, or purpose can be otherwise defined as fulfilling the needs within an environment. For example, cooking one meal a week, setting the dinner table every night, and sending one thank you card a week may be one person’s purpose.

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The Adlerian technique of offering a printed copy of the classical lifestyle summary, in particular, assets and strengths and interfering attitudes, beliefs and behaviors, provides a framework for the participatory process of therapy. Second, when a person is affected by cognitive shifts, the written summary offers another mechanism of information delivery. The frontal lobe, responsible for higher mental functioning (i.e., planning, concentration, etc.) is engaged. Further, I can see where a participant’s potential anxiety and frustrations with forgetting may be minimized by offering this written narrative. Third, it may be empowering for a participant who feels out of control in so many areas of his life. Let’s turn now to a vignette to further support our understanding of a classical lifestyle summary. Jerimiah, age 82, is in a temporary assisted living situation as the result of a fall. He constructed a home 20 years ago with “intentions on dying there.” The layout is such “that if my wife and I needed help, then someone could live there, take care of us and we could die there.” His wife has since moved from their home into a different assisted living place and GAP is for him to join her there in about one month.

During our session yesterday, Jerimiah brought up the notion of agenda setting and that I have an agenda “to get me to talk or do physical activity.” I shared with him that I try to operate from a perspective of entering a session with no agenda and instead collaborate with each person to co-create an agenda. This softened his tone and he seemed to really open up. His commenting on the summary and seeing his interjections reflected in a rewrite of the summary mirrors his ability to make choices about other areas of his life and have real consequential meaning for him. Fourth, the written summary speaks to the purpose of overall wellbeing. A sense of independence, one element of wellbeing, is a goal of Jerimiah’s. He fears “being bound to a bed and just staring at the ceiling. Even with my foot how it is, I can at least move around a little. Of course, it’d be nice to be able to move around even more, but it is what it is. No one will cut off my leg. I ask all the time. Even you won’t do it.” Feeling a purpose of engaging in increasing his own wellbeing, with a written document in hand, echoes the work he did previously – business consulting and fundraising. Bridging from past to current to future, we can see where feeling a purpose may parallel the current physical limitations he experiences and set the stage for him seeing where he can interact with his environment and have immediate, life changing effects. The written summary offers a tangible framework, engages the frontal lobe, empowers and provides purpose. Beyond the written summary, I see the direct application of an Adlerian framework, one developed within a wellbeing and growth model, as a change mechanism for exploring purpose. As previously noted, the final cause or purpose is crucial for increasing internal motivation. Humans are not cogs in wheels, rather layers of intricately woven fibers of histories, to be explored using cognitive maps and enhanced by rewriting maps.

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Cognitive Behavioral Therapy This approach overlaps and deviates with several other therapeutic approaches: Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), solution-focused therapy (SFT), and attachment-based therapy (ABT). CBT, like AP, explores the relationships between belief systems and emotions and behaviors. Take for example, the results from Boelen and colleagues, who describe the effectiveness of an individualized approach to counseling failed to disprove increased effectiveness of offering CBT compared with simple supportive counseling within the context of complicated grief work (Boelen et al., 2006). AP takes a deeper look at belief systems by considering the perception of these systems. ACT promulgates the activity of identification and acceptance without modification, whereas AP seeks to identify, accept, and modify. Nonetheless, both share a commitment to greater wellbeing, acceptance of feelings of inferiority, and learning to be one’s own best friend. SFT and AP are both future focused, identify and strengthen client strengths, and maintain an importance on a strong therapeutic alliance. Additionally, both approaches hold an optimistic view of people, unlike ABT that is deterministic and minimizes the degree of creativity in participants. One similarity with AP and ABT are that both are concerned with attachment styles, although ABT explores it to great lengths, while AP considers it as a possible contributing factor. AP focuses on the development of lifestyle: degree of activity, birth order, family values/atmosphere, organ inferiority, and parenting style. Human functioning is an amalgamation of thoughts, behaviors, affect, and motivations. Thoughts inform one’s reality. A unique quality of humans is to think about thinking. According to Cognitive Behavioral Therapy (CBT) the process of thinking is one part of a system that contributes to a human organism’s overall state of homeostasis. In addition to the cognitive system, there are also “affective, motivational and behavioral” systems that are simultaneously activated to process incoming stimuli (p.  232). This whole systemic activation, or modes, inform one’s personality. It should be noted that while there are not specific contraindications for use of CBT or any of its sub approaches (cognitive processing therapy, cognitive therapy, dialectical behavior therapy, or rational emotive behavior therapy), it has been suggested that people with “subnormal intelligence are difficult to manage through CBT” (Gautam et al., 2020). Due to CBT being a talk-based therapy modality, people living with ADRD, with presumed language challenges, then would be included in this group as “difficult to manage.” In addition to language, some credit the cognitive changes experienced by someone with dementia symptoms as being reasons for not employing CBT techniques. For example, comprehension, new learning, making new memories, recalling and applying information learned in therapy sessions. Other researchers focused on non-cognitive components of dementia, and in particular focusing on BPSD and ways to improve quality of life for people living with ADRD as well as caregivers. One study focused on apathy, depression, anxiety and

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irritability and the role these characteristic play in reduce the quality of life of people living with ADRD and caretakers (Forstmeier et al., 2015). Researchers in this study employed a manualized CBT treatment protocol with 50 subjects diagnosed with Alzheimer’s of vascular disease. Based on follow-up testing of valid and reliable measures, changes in NPI scores were evident. Another group of researchers highlighted the multipronged need for studying at greater depths apathy (Mortby et al., 2021). In particular, these researchers suggest apathy might be a treatment target in both pharmacological and nonpharmacological methods. There is some promising results coming out of research on a modified model to treat anxiety in dementia (Kwak et al., 2017; Spector et al., 2015; Mah et al., 2015; Kraus et al., 2008). As was mentioned in Chap. 2, anxiety, depression, and apathy are typical BPSD subsymptoms. In one small study, researchers modified CBT approach to include training (education and awareness), diaphragmatic breathing techniques, self-talk focused on coping, exposure, and behavioral activation (Kraus et  al., 2008). The process for comprehension was reinforced utilizing spaced retrieval training and between session telephone calls. These researchers named this therapeutic technique cognitive behavioral therapy anxiety in dementia (CBT-AD). As a side, it’s interesting to note the research on spaced retrieval training among people living with mild to severe cognitive impairment (Small & Cochrane, 2020; Han et al., 2017; Jang et al., 2015). Studies show cognitive improvement with short time exposure to intervention. A cornerstone of CBT is recognizing rigid primal mode responses or reactions and learning to override this with more flexible and adaptive modes of operation – suggesting the activation of the appropriate corresponding flexible and adaptive cognitions, behavior, affect, and motivations. It’s important for a therapist to know first the mode from which a client is operating. One apparent strength within the CBT tradition, as is related to the process of grief, is unpacking somatic and cognitive vulnerabilities. A client who is grieving the sudden loss of their friend who died from a heart attack, may extrapolate from their friend’s death a host of schemas that may be unrelated to the actual death. If the participant holds a belief that low air temperatures lead to heart attack and then to death, based on previous learning from an unrelated earlier experience, they may minimize their current distress by fueling their idiosyncratic thinking. The participant’s selective bias would be blind to other factors that could have contributed to their friend’s death such as 70 years of physical inactivity, 45 years of smoking 20 cigarettes a day, repeated over consumption of alcohol, underconsumption of nutrient-rich foods or even access to adequate medical care to open the blocked artery. Each of these might have been contributing factors and then there might also be consideration for combinatory impacts. Cognitive distortion, a magnification of the significance of the air temperature leads participants to catastrophize, “Cold weather causes heart attacks and so I will always live in a warm climate.” While a participant is engaged in grief counseling, the surfacing of this absolute belief can be restructured into adaptive thoughts and behaviors that will limit future distress. The therapist may, in collaboration with the participants, use guided discovery as a way for the participant to conduct behavioral

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experiments. The use of collaborative empiricism and guided discovery unfold within a Socratic dialogue where a participant may lift their own veil and discover healthy perspectives. Loss can be devastating and distressing. With the use of collaborative empiricism, I see where a participant’s active role in depicting a desired life scenario can be empowering and allow the client to regain a sense of control. Feeling in control, operating on the world rather than the world operating on the client, can be particularly important at a time of physical, emotional, social, and psychological loss. Allowing a client to reflect on how their discovery of new information fits with their previously held beliefs, “Cold weather causes heart attacks,” or implicitly stated, “I will protect myself against a heart attack by living in a warm climate,” seems to hit on emotional deep change. Once the client is able to identify the meaning they assign to their conscious beliefs, then they are able to create healthy schemas for orienting themselves in their world. With cognitive therapy being a present-centered technique, I can see great applicability to working with people affected by dementia. In particular, I am curious about the use of cognitive rehearsal with someone who is affected by dementia. A limited body of research exists on the effectiveness of cognitive therapy with people affected by dementia. It has been suggested that cognition-oriented treatments, including reality orientation and skills training, are useful in reducing BPSD. What’s more interesting is the potential anxiety or depression that may be experienced by people displaying BPSD. The use of questioning, Socratic dialogue, allows people affected by dementia to exercise agency. Thoughtful and strategic questions have emancipating power. Let’s meet Teruko to see how these components play out in real life. Teruko is 78 years old. She was an artist in Japan and moved to the United States on a teaching fellowship. She was teaching at UCLA when she met Tommy. Teruko reported “We only go married because I got pregnant.” They raised one son who is now 50. He lives about 250 miles away and visits monthly. Teruko and Tommy discussed divorcing when Tye graduated from high school because “he [Tommy] cheats on me. I came home one day and they were in our bed. Why not take her somewhere else?” Tommy reported “she is just being so strange. I can’t take care of her like this. She didn’t want to go so I told her she is part of a special art study where she’ll get to work with students.” Tommy reported taking Teruko to several doctors until one agreed to diagnose her with delirium which is a risk factor for new onset dementia. A locked residential care space that is strictly private pay accepted Teruko as a new resident. This is where she currently resides and asks the people who work there “when are the students coming because I’m supposed to teach a class?”

In our fourth session, I designed a series of questions to promote new learning for Teruko. Space was created where she was able to draw out meaning of events and thoughts. In a world where so much is done to you and for you, being able to express your interpretation of your concept of your self-image and you in your world can be freeing. Through dialogue and drawing homework, Teruko identified thoughts, images and assumptions of her core belief that all men are unfaithful. She exclaimed, “Men only want one thing. Sex. That’s all they care about. He’s getting sex from somewhere else because I’m in the hospital now.” Through dialogue, and guided discovery, Teruko articulated that her concern was less about sex and more about

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feeling unwanted. She feels responsible for being in the hospital and feels unheard by people who work there. She is concerned that while she is in this special study, her husband will leave her. She then added, “What if I never leave this study?” Through the use of decatastrophizing, Teruko came up with five possible scenarios of how her husband spends his time while she is “in the special study” based on her previous experiences and his behaviors. More importantly, she listed 12 possible self-talk statements or images she can use when the automatic thought is triggered, “I will die alone.” We incorporated her previous professional experience into her current therapeutic work. Often, among people diagnosed with dementia, cognitive functioning is vastly underrecognized in conversation and daily living and underutilized in performance of activities of daily living. Allowing ample space for exploring emotions, behaviors and thoughts and recognizing them as unrelated or asymptomatic of a disease or diagnosis is important to restoring homeostasis and creating congruence between all systems.

Rational Emotive Behavioral Therapy Humans’ mind-body functioning is more connected than it is separate. In other words, thinking and feeling are not isolated entities contained within the human mind and body, respectively. Rational Emotive Behavior Therapy (REBT) holds at its core an educative process of unconditional acceptance of self, others, and the world/life. Unlike other psychotherapeutic techniques we have explored thus far that tend to investigate antecedents and perceptions of consequences, REBT focuses on belief patterns and systems. There are two REBT-methods for instructing a shift in maladaptive attitudes: general and preferential. The first is more aligned with cognitive-behavioral therapy, by emphasizing a teaching modality in the realm of healthy and rational behaviors. Preferential REBT includes the tactics employed in general REBT and expands on these teachings and promotes a philosophical shift. At its core, REBT is a theory of personality change. Three components involved in emotive and behavioral methods that are utilized in REBT include unconditional acceptance, disrupting irrational beliefs, and developing an increase in high frustration tolerance. This process can be simplified into three steps: (1) the therapist shows the client their hidden beliefs; (2) a therapist teaches a client how to bring to the surface their hidden beliefs; and (3) the therapist confronts the client’s beliefs and in so doing, teaches the client how to actively dispute their own irrational beliefs. It is suggested that irrational beliefs such as demanding can be sculpted like a piece of clay into a vase of desire. REBT is mainly focused on the present situation or the current belief pattern – one that potentially has roots in early childhood experiences or memories or even birth order. REBT is not concerned with the aforementioned three areas of roots rather homes in on beliefs that have that are in operation and have been maintained and perpetuated by the narratives we tell ourselves and others.

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Albert Ellis and Debbie Joffe applied REBT to aging and grief. Because REBT offers support to clients in developing a realistic representation of their life, I can see the direct application to processing grief. If we draw on Kübler-Ross’s five stages of grief: denial, anger, bargaining, depression, and acceptance, then we can use the power of should within each of these stages or domains to transcend grief. Complicated grief and physical wellbeing are analogous to the mind-body relationship. They are more connected than they are separate. Our bodies, at a mitochondrial level, change when exposed to traumatic events. REBT offers tools for facilitating deep philosophical changes. Rather than focusing on shifting feelings, say for example relabeling anger, REBT espouses a change to the belief system that supports the manifestation of anger. Philosophical changes, the way we think and interpret events, share a direct and immediate link to how our physical body functions. The power of should lends itself to processing grief by existing within the growth-model of REBT. By its very nature, should implies multidirectional movement. In other words, the utterance of should is indicative of a comparison process between then and now, me and them or present and future. Although “should” statements could be eliminated from one’s vocabulary by practicing present moment awareness, this may be a superficial process if it is imported into and glossed over deep neural pathways. Client’s views of the world are seen through the lenses of their belief system. This system is referenced with each occurring event. When an event occurs that incites grief, then the feelings a client experiences also pass through this system and are either reinforced or rejected by their belief system. REBT allows clients to rearticulate their belief system that produces feelings. Grief shifts the lenses through which we view the world, replacing low-powered reading glasses with high-powered magnifying lenses. Should statements are direct descendants of client’s belief systems and when uttered within the context of grief, hold profound power to make rigid thinking more rigid or flexible thinking more flexible. Transitioning between rigid and flexible thinking can also be acted out within the context of diagnoses. For example, a person diagnosed with dementia may hear expected cognitive and emotional roles and perform these with rigidity – even if expressed expectations by others stand in opposition to one’s belief system. Let’s use a vignette to understand rigid and flexible thinking. June who recently moved into a locked residential space specifically for people diagnosed with severe dementia (Rainier House). She hears, from doctors, nurses, social workers and her family, messages of what she can and cannot do, thinking and doing for herself belonging to the latter category. When I enter her current living space, June and I chat for a bit and then based on a conversation two days prior, I say, “How about I go to the living room and see who wants to join us and you go knock on her door and invite her down. Is that a plan that works for you?” She implicitly acknowledges agreement or participation by smiling and nodding her head up and down. We each go our separate ways and then meet back at the area where we set up chairs in a circular form. June returns with Deborah, another person who lives at Rainier House. Two days prior, Deborah was not in the circle as we were beginning our 45-minute mind-body awareness session and June tapped the arm of her chair, made eye contact with me and said “She…she...she…maybe…maybe… maybe…” and pointed down the hall toward Deborah’s room. I said, “Hey, good looking out Sheila.

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Deborah said last time that she wants us to knock on her door to remind her because she doesn't always remember when class is. I forgot. Thank you. I'll go to Deborah’s room and see if she wants to join us and I’ll come back.” Sheila clap her hands with excitement. A smile appeared across her face and she said, “Yeah, yes yes.” I knocked on Deborah's door and from where Sheila was seated, she could see down the hall to the third door on the right that entered Deborah’s room. Deborah opened the door, and said, “Oh, you’re here for exercise.” As she was peeking her head out, she said, “Oh yes. I’ll be right there.” Sheila said, “Yeah, come on.”

I encourage flexible thinking processes with all members of this group as a method of reinforcing capabilities. Sheila is perfectly able to think and act on her own accord. Sheila and others at Rainier House can easily become trapped by rigid thinking and acting that is prescribed by their diagnosis of severe dementia. Some of the therapeutic techniques inherent to REBT, unconditional self-acceptance, may parallel the experiences of residents at Rainier House who participate and engage with their living environment. It is noted in the REBT literature that this technique should not be used with people affected by brain damage. However, encouraging taking risks, Sheila going down to knock on Deborah’s door and inviting her to class, reinforces the idea that both Sheila and Deborah are capable of functioning and interacting with their environments. Residents of Rainier House may be experiencing some cognitive shifts and their cognitive reserves are incredibly powerful. These reserves hold the possibility of supporting their thinking and feeling in ways that satisfy and satiate their humaneness, rather than simply being pawns waiting to be acted upon. These above therapy models share some similarities as well as deviations from Adlerian psychotherapy. With respect to the context of grief, perhaps it’s clear where motivation modification, rather than behavior, thought, and/or feeling modification can lend itself as useful to healing throughout the grief process. A participant may begin to think about the ways in which grief has served a purpose. If we operate from the perspective that we are motivated to thrive, perhaps one of the ways grief manifests is to further support this thriving. For example, an investigation into grief experienced prior to the age of 10 may elicit some important patterns that are applicable to the current grieving process. A participant’s response to “The Question”  – What would be different in the absence of your symptoms?  – offers some insight into the purpose grief serves. Responses shed light onto areas that are being masked or protected, as well as avoided. Additionally, during the initial intake session, within the treatment expectations area, the question of – Who is the most famous person of all time and why? – can be used as a model for grieving. If a person is unable to visualize themselves existing in the absence of their symptoms, then using the named famous person may be one method for working through grief. When a client considers how another person may respond or reorient, this may offer a bridge for restructuring their own narrative.

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Person-Centered Two hallmark features of person-centered therapy is a laser focus on the process of therapy (rather than an outcome-based orientation) and the role participants play in their self-realizing, self-determining, sovereign subjective agents as mechanisms of change. We could think of the change process as a three-sized matryoshka. A client’s shift in perception of self-concept, from an objective “me” to a subjective “I,” becomes an impetus for environmental changes. The center matryoshka is where the change from an external to internal locus of evaluation occurs. The outermost matryoshka represents the felt bodily sensations and locale of emotions. At no point is it the therapist’s role to lead or persuade a client in feeling presumed deeper layers of their experiencing. At this point in therapy, with clients being the authors of their histories, a therapist would have to deviate from their role and import activity and experiencing that exists outside of the client’s consciousness. If this is done, then a therapist has abandoned the important client-centered three therapeutic constructs: congruence, unconditional positive regard and empathic understanding. Within the humanistic psychotherapy tradition, person-centered therapy stands in contrast to emotion-focused therapy, focusing oriented therapy, existential therapy and experiential therapy, by promulgating a dramatic allegiance to a nondirective attitude. In other words, for the therapeutic relationship to remain genuine, the therapist must refrain from interjecting thoughts or attitudes that exist outside of clients’ consciousness. This is easily mitigated by a presumably not so easy process – therapists committing to feeling within the lived experiences of clients rather than observing from a position of distance. Working through the process of grief within the context of a growth-orientated model, in contrast to a developmental model, may allow greater flexibility of emotional exploration and multidirectional movement within an emotional color wheel. For example, when exploring a client feeling mad, a growth-oriented model may lend itself to investigating feelings from hurt to hate to critical (and all surfacing emotions in between) and then outward to distance to jealous to skeptical, all of which are permutations of feeling mad. An exploration of feeling mad that grows from a root in an internal locus of evaluation, is organic, homegrown and longer lasting. The abovementioned person-centered and process-directive therapies have the potential to undermine the integrative process of loss when a participant is seeking growth from grief. A major strength of client-centered therapy is in the growth and exercise of agency. A sense of agency presupposes an internal frame of subjective reference. When the necessary pre-steps are glossed over, as could be said to be the case in process-directive therapies, where participants operate from a point of the objective “me,” then change or growth is short lived. Change in this context is imported (from therapist) rather than growing organically from the fertile inner grounds (the participant). There is a perpetuation of valuing of self that originates from an external location (therapist). It is not until motivation transcends this external-­internal dichotomy that deep prolonged felt experiencing occurs.

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We could draw parallels between the magnification of personhood inherent in person-centered therapies and Martha Nussbaum’s capability theory of justice (Nussbaum & Levmore, 2017). As we have touched on previously, it’s interesting to see the application of Rogers’ theories at play in contemporary American sociopolitical economic context. Both Rogers and Nussbaum believe humans are ends rather than means simply by virtue of assigning the label of human beings. Their belief continues with the dignity and respect being unconditional and predicated on the fact of being human beings. Operating from a place of dignity and respect significantly modifies the dynamic process of change inherent in the therapy process.

Therapy Process Above, we explored seven therapeutic frameworks and used these to understand how informing interventions from a loss perspective can guide understanding of the lived experiences with ADRD and BPSD. Embedded within this conversation and related to the significance of operating from a well-informed and strong evidence-­ based theoretical framework, we can now consider the importance of how three components of the therapy process occur. In the below sections, we will explore three processes: internal shifts, process structure, and evaluation.

Internal Shifts During a session, it’s important that we suspend our agenda and meet a participant where they are. This is one sure way to observe the process of change in action. Conversely, if we hold too rigidly to our observations and preconceived notions of what will take place in a particular session, then our potential measures of effectiveness are sure to falter. This type of incongruence is the immediate result of a breach in the therapeutic alliance. Honoring a participant’s agenda is of utmost concern for conveying warmth, empathy, and care. As will be discussed in more detail below, one measure of change can be seen in the therapeutic alliance and more precisely the relationship style or attachment style that is modeled by a therapist. The significance of considering past-present relations is a dimension within feminist and phenomenological theoretical orientations that is midway between cognitive-­behavioral therapists and the psychodynamic approach. The former tends to be unconcerned with the past, while the latter promulgates an absolute regard for the past. Each participant is different and there may be previous unintegrated grief episodes that a participant wants to unpack. Another participant may identify with the grief they are feeling surrounding a recent diagnosis of dementia. In both cases, where we begin may not be where we arrive at the end of a particular session, and yet with a solid conceptualization of orientation, we will be moving with a participant toward integration with their stated problem and with our collaboratively

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detailed goals and objectives. Some parts of grief are best understood by investigating the past, while other episodes of grief reserve integration for deep and thorough investigations of the present moment – by folding these grief episodes into the current narrative. Maintaining an appreciation for a participant’s agenda surfaces yet again as an important part of the process. Consideration of directive versus non-directive styles is particularly important with people living with dementia symptoms. It can be necessary to the therapy process to tune into unintended and intentional consequences of body language. For example, consider the message that is conveyed when we lean toward a participant or lean back – communicating: “tell me more” or “I am uninterested,” respectively. My experience has been that people who are affected by dementia have a heightened sense of awareness that exists outside of the cognitive domain. Another example is the tone of our speech. The key here is an emphasis not necessarily on what is said rather how it is said.

Process Structure A related topic within this same dimension is process structure and whether or not to consider using inter-session assignments. There can be a combination of unstructured sessions book ended with a follow-up of homework from the previous session at the beginning and an assignment of homework at the end of the session. Being oriented toward both existentialism and feminism, we will see where DGT is less concerned with symptom reduction and rather a highlighting of the whole-person’s wellbeing – mind-body homeostasis. Therefore, homework can serve multiple purposes in the process of a participant realizing their full potential, self-actualizing and a thriving self-concept. One of the benefits of homework is that “change needs to take place in [participants’] lives more generally, not only in the therapy hour” (Okun & Suyemoto, 2012). It is not enough for a therapist to witness a shift in a participant’s perspectives, or selection of healthy behavioral responses (definition of health situated within a participant’s self-conceptualization) or emotion regulation (as prescribed by a participant) within the controlled, comforting and caring environment of the therapy session. Certainly, modeling a secure attachment is important for facilitating change, yet it is our hope that participants are able to replicate the behaviors, thoughts, and emotions they tried on in the supportive and nonjudgmental counseling session and wear them out into the world. Perhaps even wear them with appreciation or pride (other measures of change).

Evaluation Articulating the specific process of change, mechanisms of change and measured goals and objectives are necessary precursors for adequate evaluation. In research, an equivalent would be to use a psychometric that has been validated within one

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group to arrive at a particular outcome measure and then without proper application, utilizing this tool to assess another group or asses an entirely different component. As it relates to our discussion herein, an example would be to use the Standford-­ Binet (SB-5) to determine if one presents symptoms of dementia (Roid, 2003). The presence of dementia symptoms is by no means a sign of lack of intelligence, an outcome measured by SB-5. Instead, assessing cognitive impairment, or trauma history, or complicated grief are more appropriate assessment tools. Evaluation of the therapeutic process is no different. We want to ensure that we are indeed supporting people in shifting X, so we must utilize tools that adequately measure X. As Okun and Suyemoto remind us, throughout the evaluation process it is important to keep in mind both case conceptualization and theoretical orientations (2012). This nudge magnifies the importance of grounding our chosen strategies and treatment goals within an established theoretical framework. As was previously mentioned, and as we will see in Chap. 6, DGT relegates symptom relief to the hinterland. In other words, rather than the sole focus being on symptom relief, it’s necessary to recognize that shifts are a natural by-product of the therapeutic process. Let’s turn to a composite for greater clarification. Rick is 81 years old. At his last visit with his primary care doctor, based on the prompting from his husband, Juan, he was recently screened for cognitive impairment. Juan reports, “Rick just can’t remember anything. And he yells all of the time. OK, not all of the time, but he’s different. He was never an angry person. And now he is so agitated and paces sometimes. He is just not the same person I met when we were in our 30s and 40s. Well, I guess I’m not either, but you get my point. I just really hope that he hasn’t lost his marbles and that he’ll stop yelling.” When Rick was asked what he thought was going on he said, “I’m not yelling, I can’t always hear. And this new apartment we moved into 2 months ago reminds me so much of the place we were living when I was a kid and my dad just stopped coming home. He’d work in the fields and would always come home to my mom and brothers and me. Then we moved to a new apartment and he never came around again. He died two years ago and I never saw him after we moved. Ugggh. That was 70 years ago. That’s a long time. I mean, that shouldn’t be an issue now. That was so long ago…and…it really doesn’t matter anyway. I just don’t understand why I can’t shake how much this apartment reminds of being a kid.”

We have explored more generally the therapeutic process and how internal shifts, process structure, and evaluation occur, as each of these three areas are informed by a feminist-existential orientation. Previously referenced, was the selection of a person-­centered approach which is applicable to working with people who are commonly understood to need constant guidance and supervision. We can use an example from working with people in a memory care space. I enter their space for a 45-minute block, three-days a week and interact with them from a completely different point of reference than do most others. My observation is the typical method for interaction is a quasi-interaction that assumes a position of superiority, on the part of the employee, over people who live there. A telling rather than listening and responding and engaging in a bi-directional conversation. We can use a case composite to understand typical interactions. “She is so confused. She never knows what’s going on,” stated one nurse, when a person walked into the room where we were setting up chairs for our mind-body awareness group.

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The woman who lives there said, “I came to socialize.” To which the nurse said loudly and within close proximity to Lola’s left ear, “No, it’s not lunch time,” and the nurse shook her head and glanced toward me and uttered the above-mentioned comment. I wanted to scream at the oblivious nurse in sadness for the woman who was not being heard  – “Listen!” Instead, I said to the nurse, “Oh, I think there was a miscommunication. Lola, I heard you say you came to socialize.” Lola shifted her gaze toward me and responded with a smile. I asked Lola, “I’m setting up some chairs and want to put them in a half circle and don’t know the best placing of chairs so everyone can see and also have room. Should we do it together?” Lola smiled shyly and began walking toward me. I asked, “How should we arrange them?” I followed Lola’s lead and we set up the chairs together.

The serendipitous outcome, from listening to people and responding in an inclusive manner, was empowerment. At least in that moment, Lola felt heard. For a flash, she was a person who was treated with respect and dignity for no other reason other than she is a human being. Also, Lola was able to execute her original idea for how the chairs should be arranged. Perhaps I am making more significance out of this than the degree of actual impact, however I truly believe this contributes to Lola’s wellbeing and self. Interacting with people who are living with dementia symptoms as self-realizing, self-determining, and sovereign subjects who are fully capable of making decisions for themselves is necessary for fostering a self-­ respecting community – one where everyone can thrive.

Continued Living The field of dementia health has failed to account for the impact of current and past grief and traumatic episodes when conducting initial assessments. Outside of the field of dementia, loss research that focuses on difficulties a bereaved person experiences with separation from the deceased has suggested that somatic and psychological symptoms are natural concomitants. Within the field of dementia health we have pathologized these same symptoms as some forms of dementia or BPSD (Rubin, 1999; Stroebe, 1992; Volkan, 1981). It can be expected that because of detachment challenges emotional, interpersonal, or cognitive changes can become apparent. Obtaining a numeric value on one’s grief could serve multiple purposes, most notable of which is creating a therapy plan that is situated within a person’s historical context and maintains a commitment to continued living and thriving. As we discussed previously, when a person transitions to an LTCC, a thorough whole-­person dementia assessment could consider: “primary and secondary losses, family roles, desired lifestyle, social changes, envisioned future, personal identity” (Okun & Suyemoto, 2013). Adopting a grief informed person-in-environment perspective may moderate BPSD. As we have discussed in previous chapters, mounting evidence suggests a strong hypothesis in support of the pathologizing of BPSD being an outcome of the treatment, rather than a subset of symptoms of the disease itself. Investigating any one of multiple loss episodes across the lifespan may offer a window into dementia recovery – internal peace. For the purpose of this section, aimed at drawing parallels between living with grief and dementia, we will explore three:

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the impact of parental death on identity validation, middle adulthood sibling death, and self-image of a stigmatized past in young adulthood. Identity Validation Who validates people’s identity when diagnosed with dementia? Moreover, when a person relocates residences into a memory care center, who then validates identity? Bagnoli discusses the disruption to identity development for young adult’s whose parent dies and suggests that necessary for defining one’s self is “an internal reconstruction of the deceased – imagining the lost other” (2003). For people diagnosed with dementia, the “lost other” is all of the imagined future possible selves as well as the previous selves that never were (Ibarra, 2003). Let’s turn to a composite narrative to understand the process of identity validation. Claire was diagnosed with frontotemporal dementia at age 67. Three future selves of Claire include retiring as a lawyer, starting a non-profit legal network, and hiking at Mt. Rainier, “just one more time.” At present, “I just really don’t see how I can complete any of these activities or ambitions. I mean, they say I can’t even dress myself, so really how could I do anything beyond figuring out the right way to put my pants on?”

Validation of who Claire is at present, recognizing losses and then reconstructing identities are necessary in moving toward recovery, integration, and internal peace. If Claire is in a supportive environment, one that offers secure attachments and a community with a shared narrative, is this enough for Claire to feel safe sharing previous life losses? If then, Claire shares previous life losses, does an unraveling or unveiling of previous losses begin the process of emotional-cognitive shifts that lead Claire to having increased capabilities? With an increase in capabilities does Claire then begin to feel empowered to actively participate in her environment? Sibling Death We can explore the intricacies of the death of a sibling in adulthood and draw parallels with the process of a dementia diagnosis. For an adult sibling, researchers highlight the potential for a surviving sibling to grieve the part of themselves that is absent when their brother or sister dies (Godfrey, 2008). Additionally, there is a process of emotion invalidation that occurs when siblings live in two different geographic locations and one dies (Marshall & Davies, 2021). Similarly, the process of invalidating the feelings of the person who is diagnosed, much like the death of an adult sibling, often occurs because much of the focus is on family members and caregivers, with conversations occurring about the person rather than with the person. By not validating the feelings of people diagnosed, mourning can be prolonged and complicated and may even lead the person who has recently been diagnosed to hide their feelings. This is a similar process experienced by adult’s who experience the death of their sibling.

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In both instances, these types of disenfranchised grief have a direct impact on other bodily systems and may present as multiple other maladies. Research is clear on the links between grief emotions and the body’s immune and recuperative responses (McCoyd & Walter, 2016). It is important to remember the multiple roles the person filled prior to diagnoses. Disease labeling does not dismantle these roles – rather grief becomes disenfranchised. For a mom who is diagnosed, she may not reveal her feelings to her family due to a history of fulfilling the role as matriarch of the family, resulting in a delaying of her own grief or suspending it indefinitely. Often the personhood of mom is exchanged for a disease label, thus making sense that mom is not seen as also being a person actively engaged in the grieving process. A recognition of mom as a person is a vital and a necessary step toward increasing capabilities. Stigmatized Past A third parallel between other life losses and a diagnosis of dementia is when young adults transition from a past that is stigmatized within their current social circle. As Shdaimah and Leon discuss the transitional process for prostitutes who interact with the legal system, where their business is described as immoral, illegal, and offensive (2014). The impact of this clashing narrative, one that stands in opposition to their own self-narrative of electing self-harm rather than harming others by stealing. With an introduction to a new shared narrative, recognizing the strength in loss and mourning and working through this is powerful and damaging to an identity that once served self-protective measures. Similarly, an argument can be made for people diagnosed with dementia, particularly people committed to a memory care center, where there is a shared narrative being silenced by some treatment methods. Perhaps it is out of these very treatment methods that BPSD sprouts. Or, could it be that BPSD is a mislabeling of personality characteristics that have been present throughout one’s life? Or, perhaps it is a cluster of characteristics that with increased unmetabolized grief then heat generates in the body and presents as defiant behaviors. Put differently, BPSD is the result of increases in inflammation (Schaffer Aguzzoli et al., 2023). What then would be identifiable character traits that could predict cognitive shifts when overloaded with unresolved grief episodes – so much so that one meets neurocognitive diagnostic criteria? These character clusters, when placed within a model of care that emphasizes autonomy, are similar to oil and water – they don’t mix supportively. So long as we maintain a model of care that places people diagnosed with dementia outside of their life, with others acting on their world, we will continue to see a rise in people struggling to be recognized. Adopting a grief approach to care, holds promise for increasing flourishing for people diagnosed. We’ve explored three different episodes of loss in two different lifespan stages: the impact of parental death on identity in young adulthood, middle adulthood sibling death, and self-image in young adulthood. Developing therapeutic approaches that emphasize agency over autonomy may be necessary for recognizing earlier life losses which may then

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result in a decrease of dementia cases globally and an increase in more people flourishing. Must we identify or embrace a loss to heal? Is loss a social and psychological construct that grounds grief? Perhaps a recognition of loss for some serves as mitigating emotional overwhelmingness; while for others loss suspends time and impedes contextual recognition. Bowlby has suggested that attachment theory defines human behaviors associated with loss. We will discuss the historical roots of attachment theory, the role the self-other dyad plays in living with dementia symptoms and set this against a backdrop of grief. Our discussion of grief will center around the exploration of three areas: resistance, reunification, and relinquishment.

Historical Roots of Attachment Theory Bowlby defined attachment as a “lasting psychological connectedness between human beings” (1969). Further, Bowlby went on to suggest that attachment development originates with a consistent other, typically the primary caregiver. The foundation for a sense of safety and security is laid and a prototype is formed against which all other relationships will be judged. Similarly, Erikson’s concept of basic trust (or mistrust), established in his first stage, informs future encounters (Erikson, 1963). As his theory of development suggests, the development of trust leads to establishing a sense of hope. In the absence of trust, fear arises. These early attachment experiences can have direct implications when dealing with grief in later life. Resistance For a person who operates in the world from a position of trust and hope, then when the self-other dyad is disrupted by the death of the other, then one can trust in the possibility of another other. A biological theory of grief suggests attempts are made to reconnect with the lost other. Bowlby frames this as conceptualizing a loss as retrievable with ensuing instinctual behaviors (Bowlby, 1980). What happens though when the self-other dyad is irrevocably changed by the death of self? Dementia, one instance where the self transforms into the other, has not been fully developed in the literature. Much of current research efforts, as we’ve already discussed extensively, are focused on caregiver grief, such as the work of Liew and colleagues on pre-­death grief (PDG; 2019). Additionally, as we discussed in the previous chapter, the work of researchers on iterations of the Dementia Grief Model fail to consider the mourning process of the person living with dementia symptoms (Rubin et al., 2019; Blandin & Pepin, 2017; Noyes et al., 2010; Silverberg, 2007; Meuser & Marwit, 2001). As we can see developing in this book so far, a strong case for considering the effects grief experiences have on attachments within the person living with dementia symptoms.

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Reunification From Freud’s perspective we grieve the loss of attachments. The process of mourning is an act of detachment. The hope of reattaching occurs through reunification. A universal response to loss unfolds in spiritual and religious texts and beliefs about reunification or when attempting to reunite with one who is deceased (Parkes et al., 2015). I would add that a similar process is present when a person is grieving the psychologically or emotionally death of the self. In the words of Judith Viorst “few of us will renounce our youth with anticipation of gain” (1986). Further, to complicate the aging process, we cannot age without youth. In old age, youth becomes the other. However, socially, culturally, and politically, youth is never the other, rather old age is the other. When the self becomes the other then our witness abandons us, unless another other is constructed. In the U.S. we have our real-life lived experiences held in contrast to images of say for example, Shirley Chisolm and Sophia Loren and what it means to be old. In a similar vein, people diagnosed with dementia have their own lived experiences and then the public media flashes images and messages of dementia. Beginning in 1994, with the Reagan’s decision to be open about Ronald’s diagnosis of Alzheimer’s to most recently, Supreme Court Justice Sandra Day O’Connor’s public statement about her dementia diagnosis. Are the gains and losses experienced by celebrities the same experience for day-to-day people? In other words, what did Justice O’Connor have to lose by making a public statement? Or, did she have everything to gain? And how would a diagnosis of dementia be experienced differently for a single woman, age 89, living in a poor neighborhood, supporting herself and her two great grandsons on state assistance? Relinquishment For all of us, we hold images and expectations of former selves, with some dreams or desires never actualizing. A necessary precursor to success in the present, is a mourning or recognition of the changing self. From a social and cultural perspective, a theory of recognition that places a person diagnosed with dementia at the center of interventions, is imperative for establishing and maintaining a sense of self. A common thread woven into all theories of recognition is those whose self is depicted by the other as negative or uni-dimensional face the challenges of self-­ acceptance and self-value. Therefore, if people diagnosed with dementia are denied the space and resources to grieve, they will internalize this social redistribution of resources as excluding them. If the other does not value the self, how then can the self value the self? The host of feelings associated with processing grief can be overwhelming for people not diagnosed with dementia, and when diagnosed another layer is added. Take for example the concept of preoccupation. Obsessive thoughts about recovering the lost person is a hallmark behavioral trait of some people diagnosed with dementia. This is a behavior that becomes pathologized as BPSD. In some cases, the line of treatment is beginning Haldol. In 2006, the Centers for Medicare and

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Medicaid Services (CMC) stipulated that Haldol is an appropriate drug to be used when a specific reason has been named. Most often, the reason (in the context I am discussing the prescription of this drug) is people who are displaying agitated terminal delirium. Although far outside the scope of this section, agitated terminal delirium can be a sign of a person exercising their agency. We have a person who is grieving, engaged in feelings of preoccupation, and is near the end of their life and displaying agitation. If the person is allowed space to work through their emotions, potentially they may leave this world more intact, rather than fragmented. In the brain of someone experiencing delirium, the neurotransmitters most strongly implicated are acetylcholine and dopamine. Research suggests aerobic exercise stimulates the transmission of dopamine and diaphragmatic breathing releases acetylcholine. Further, what if preoccupation is less about the physical absence of the other and more about defining (or redefining) of the self. In other words, people embodying these feelings are engaged in a retrospective process of recovering what was lost from the self as a result of becoming the other. In sum, we can see how important it might be to consider resistance, reunification, and relinquishment when joining someone on their journey of processing their grief. Perhaps one role in supporting another’s grief is to serve as a witness for as long as it takes for them to identify another other within who will adopt the role of witness. Allowing ample time for exploration in these three areas is key to defragmenting a fissured loss.

Chapter Summary We firmly placed dementia on a global stage by exploring GAP’s seven action steps within the context of work being done in three counties: Japan, India, and the United States. Comprehension of a global understanding of dementia symptoms allowed us to open our discussion into the pre-diagnosis process where I could highlight the importance of three areas: testing, screening, and assessment. Further, in the assessment process there are four areas that may be considered: problem identification, problem clarification, participant characteristics, and monitoring treatment progress. Coverage of these areas laid the foundation for beginning the post-diagnosis process that can be conceptualized as: death, dementia, loss, and life. During the process of acknowledging a layer a death, it can be helpful to reflect on three areas: possibilities of dying, the seven sensitivities, and sensitivity to self. Once acknowledging death, other components of the therapy process can commence. Throughout this process, three changes may occur: internal shifts, process structure, and evaluation. When appropriate, during the therapy process, it can support a more salient view of existence to draw parallels between grief episodes and living with dementia, such as the impact of parental death on identity validation; middle adulthood sibling death; and self-image of a stigmatized past in young adulthood. We ended the chapter by considering the importance of three areas of grief work: resistance, reunification, and relinquishment. In particular, with an

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attunement to attachments and the historical work that has been done on this concept, we can consider how similar processes may be occurring for people living with dementia symptoms. We are now equipped to build on our understandings of attachments and begin Chap. 6 from a position of framing the body-brain relationship from a relational perspective or attachment dimensions. First though, we will consider important ethical areas.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Explain at least three universal experiences for people living with dementia symptoms. 2. Describe the significance of understanding disease etiology within the field of dementia health. 3. Share your perspectives on why acknowledging death is important to dementia health.

Further Inquiry Are dementia symptoms expressed by a person diagnosed with probable Alzheimer’s and frontotemporal different? Is it possible to develop disease etiological-specific therapeutic treatments to best serve the needs of people living with dementia symptoms?

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Part II

Proposed Model of Therapy: Global Ethics, Therapeutic Particulars, and Case Composites

Chapter 5

Guiding Ethical Considerations

Key Points • Considering beneficence and autonomy within the field of dementia health. • The ethical value in relationships and strengthening the therapeutic alliance. • Concept of accent within the context of people living with dementia symptoms.

The intended audience of this book is wide. For readers who are living with dementia symptoms are concerned about developing dementia symptoms, or who are currently on a journey with someone who is living with dementia symptoms, this chapter can offer hope, encouragement, and security that other possible narratives are rooted in ethically fertile ground. For professionals who are interested in implementing the Dementia Grief Therapy (DGT) approach, this chapter offers some key ethical principles to consider. For readers who are advocates, politicians, and researchers, the eye toward an awareness of ethical principles strengthens your work. In the sections below, we will discuss clinical cultural competence by considering three areas: (1) attention to self and other; (2) empowerment; and (3) meaning making and construction of reality. We will then explore the significance of recognizing and honoring the community memberships of the person with whom we are working. There are many communities to which a person may belong, and we will consider three: ethnicity, culture, and spirituality. We will then consider two ethical models that you can adopt in making decisions: Four-Box Method (Jonsen et al., 2010) and The Five P Model (Gamino & Ritter, 2009). We will use a case vignette of Leonard to understand a practical application of The Five P Model. We will also ponder how perhaps blending of multiple models may be more useful or beneficial in integrative practice settings. I will then offer three other areas of ethical importance that any dementia health professional must consider: confidentiality, © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_5

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decision-­making capacity, and the concept of assent. Within the second area, decision-making capacity, we will frame our discussion by considering three key areas: beneficence, autonomy, and informed decisions. Within this last area, informed decisions, we will meet Anne Reid Enoi and use her expressed end-of-life wishes to understand the application of the Five Wishes document. One important area any professional must be completely apprised of and fully integrate into our way of interacting with participants is cultural competence.

Clinical Cultural Competence To be an effective and empathetic therapist, cultural competence is an absolute nonnegotiable element in practice. Maintaining a heightened awareness of cultural situatedness and operating from a culturally appropriate perspective of a participant is integral to successful therapy. In other words, under no circumstances is it an effective practice to promote one’s own cultural views as superior to another’s. There are numerous benefits to aligning with a multicultural therapeutic perspective and at the same time, this requires diligence and openness on the part of the therapist and may seem time-consuming. The three areas of consideration are attention to self and other, empowerment, and meaning making and construction of reality. I will discuss these three areas of focus within the context of exploring the applicability of multicultural theories to DGT and illustrate how in fact, adopting a multicultural perspective is not time exhaustive at all, and is absolutely necessary if we are going to successfully move toward a global agenda of dementia health.

Attention to Self and Other When practicing from a multicultural theoretical perspective, it is important for therapists to attend to the dynamic roles of self and other – separately and collectively. A therapist must be aware of their own cultural privileges, biases, and ignorance in order to best serve participants from different (and even the same) ethnic, racial, ability, religious, and sexual orientation backgrounds. Falling into the traps of cultural neutrality or cultural blindness can occur if therapists become lackadaisical in their cultural understandings. Cultural competence is an ever-evolving process of knowing and not knowing our own self as well as the knowledge of others. The roles of self and other play out significantly in the minority identity development model (Cass, 1979). The stages of identity development mirror the grief process for some. Or, possibly the process of grief could be said to be guided by this identity development model. Similarly, feminist identity development theory may inform the process of grieving for some (Downing & Roush, 1985). Take for example the stage of synthesis, where people find peace with their own identity and reach out to supportive others – others who belong to a majority group. Within the context

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of grief, we can explore Kübler-Ross’s stage of acceptance as analogous to the developmental stage of synthesis (1969). Both stages suggest a person moving from a place of confusion or detrimental isolation toward active connections with others. It is necessary to offer a brief caveat here that stages must not be construed to suggest a time consecutive movement from one to another to another, in a linear fashion. Rather the stages can be moved between and returned to again and again. One component to some multicultural theorists is an emphasis on the flexibility of the insider and outsider status, acknowledging that the line between the two can be quite permeable (Merriam et al., 2000). If we view insider status as a change mechanism in the grief process, then perhaps adopting an outsider-within perspective is most supportive (Mani, 1998). There is a shared understanding and appreciation for each players’ environment, paralleling Janet Helms’s stage of autonomy in white American cultural racial identity (1990). At this stage, people are beginning to move to a celebration of diversity by extending acceptance, respect, and appreciation for all group members. When a person seeks support with the complexities of loss, they presumably do so from a professional who is not actively grieving and who is not currently living with dementia. Is it necessary for a professional to attain an insider role when working with the process of grief and dementia, or is it just as effective in fostering a healthy healing process to maintain an outsider-within perspective? If a therapist engages in power-differential analysis, then an awareness of internalized privilege and oppression emerges.

Empowerment A second concept essential to the work of a multiculturally oriented therapist is empowerment. One way a therapist can promote empowerment is through the thoughtful and careful use of personal-cultural narrative. A participant’s narrative may be constructed through the creation of a cultural genogram (Hardy & Laszloffy, 1995; Rigazio-DiGillio et al., 2005). This product serves as a guiding light for each co-collaborator to work in tandem to untangle, understand, and contextualize symptoms of grief: anxiety, worry, sleeplessness, fatigue, guilt, or stress. When offering grief counseling, operating from a multicultural perspective is an absolute must to meet the needs of people within their own environment, out of which their understanding of grief is grown. Let’s turn toward the experience of Maria. Born in 1904, in Yaroslovl, Russia, to a land-owner and seamstress, and last of 4 kids. There was an age span of twenty years between her and her youngest sibling and so she was raised similar to an only child. Her father and two older brothers died two months after she was born.

It is important to historically contextualize her life and losses by understanding that at the time of her birth, this was the middle of the Russo-Japan War. Her mother was emotionally unavailable and often physically absent during her formative years. Her two sisters would often step in to offer support of tending to and raising her. Her

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understanding of how to grieve the losses of her husband is grounded in and informed by the fertile soil of losses experienced at an early age. It is important to promote a sense of openness and transparency to allow spaces for dialogues on cultural differences and similarities. These dialogues are fruitful in the process of healing when they take into consideration any doubt about the role of race and ethnicity in treatment (Cardemil & Battle, 2003). Further, acknowledging power and privilege and how this might affect the interaction with a participant is critical. Let’s explore one more area that is important to multicultural therapists: meaning making and construction of reality.

Meaning Making and Construction of Reality There is a direct and immediate emphasis on a person in context model (Magnusson & Stattin, 1998). A fundamental prerequisite for healthy grieving must acknowledge the significance of the context within which losses occur. Paramount to the goals of multicultural therapists is an enhancement of the relationship between self and other. The concept of self cannot fully actualize when an “other” is absent. This is what makes framing work with people living with dementia unique. The self and other are within the same body. This concept has been explored in previous chapters. Moreover, the process of reconciling any differences between self and other serves as the fertile ground within which meaning making is able to grow. Three areas that guide the work of multiculturally oriented therapists are self and other, empowerment, and meaning making and construction of reality. The last of these can be thought of as the product that is developed out of the process of acknowledgement, awareness, acceptance, and appreciation of the self-other dyad. This self-other dyad occurs within each of us. It occurs within, and is directly informed by, the therapeutic alliance. Adopting the maxim of “unity through diversity” can create a place of comfort and safety for all to successfully grieve and thrive (Carter & Vuong, 1997). There is diversity in neurological disorder diagnosis and unity through the shared human experience of simply being human.

Community Membership Our lived experiences, including our end-of-life decisions, are informed by an intricate web of communities. Community membership may be based on ethnic, cultural, and spiritual considerations. It is key for professionals to appreciate and honor all these moments of diversity. Grasping even a modicum of understanding of diversity suggests some competence areas. For the purpose of this section, we will explore concepts of diversity within the context of community membership.

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Ethnicity From a competency perspective, we, as professionals, are obligated to familiarize ourselves with particular cultural backgrounds, differences, and needs. It is not enough to rely on participants’ for teaching us about their group of which they are a single member. At all times we should remain sensitive to potentially disrespectful behaviors and actions by continually seeking additional educational opportunities concerning participants we collaborate with. With the offerings of thousands of massive open online courses (MOOCs), there is the opportunity to be exposed to a wide variety of culturally appropriate curricula. Additionally, there are countless journal articles and books published on the importance of practicing from a culturally competent perspective (Okun & Suyemoto, 2012). Acknowledging our own cultural context and operating from a place of present moment awareness (or mindfulness) can both aid in recognizing when we are faced with participants who belong to another culture. I believe one caveat in growing our breadth of knowledge areas of diversity is to not only to respect differences in between-group membership but also to identify and respect the similarities in the characteristics that connect us. There is a careful balance to weigh in recognizing sameness and not negating differences. Collective names or group membership can sometimes mask the diversity present within group membership. As a professional we should never assume that one person’s membership to a single group thereby subsumes a set of standard operating practices or ideological adherence. As an example, a mentor once critiqued me for “being too young and not knowing anything about the culture of what it means to be old.” Unlike “young” and “old” who are social constructs, age is a biological marker. When we use socially constructed categories to evaluate our life, then we can falsely place ourselves into a category of despair (reference discussion of locus of control in Chaps. 3 and 4). Similarly, receiving a diagnosis of dementia may catapult some people into a stage of despair (Erikson, 1982). Is it possible to thrive in a stage of integrity while also living with dementia symptoms? Briefly, if instead, we use an internal point of reference and conceptualize age as the biological factor it is, then age can help rather than hinder. Put differently, when we ascribe the label of despair to our lives, then we relegate ourselves to minority status. Let’s expand a bit on the significance of cultural minority group status.

Culture As a competent professional, one area you need to always consider are the nuances and hallmark features of varying cultures, particularly ones that differ from your own member status. We may find that while hearing people’s narratives there are overlapping influences from multiple group membership, and we should never take

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this as representative of an entire group. Rather, view it as one person’s personal narrative. We can reference two concepts here that we discussed briefly previously: between-group and within-group differences. Sometimes it is the case that a single characteristic speaks more to individuality than it does to group membership. For example, there are differences among groups who belong to the birth cohort of 1940–1949. Of these members, there are also between-group differences such as a member of the 1950–1959 cohort. Members of both birth cohorts could potentially belong to the baby boomer generation and yet have very different views on what it means to live with dementia symptoms.

Spirituality Based on the lifespan approach, existential questions may be viewed through a lens of spirituality. When appropriate, beginning from a spiritual base, as defined by each participant is important. People are not necessarily seeking answers rather wanting their questions to be heard. Spirituality is informed by a conglomerate of experiences. It is the particulars of these components that people are interested in engaging with. In part, it is our job as professionals to guide these self-explorations and support people as they grapple with some of life’s big questions. When participants ask questions, it is not necessarily our role to provide answers, rather offer a solid foundation of safety and security upon which more questions can be generated.

Celebration of Ambiguity While competency in the above named three areas (culture, minority, and spirituality) are of vital importance for community considerations for professionals, when working with people from diverse backgrounds, it is sometimes appropriate to modify interventions. As it relates to the application of DGT, let’s focus on the ethical consideration of ambiguity. The cultural context within which DGT is employed might be modified to allow for a range of divergent views of appropriate behavior (Welfel, 2015). To most accurately reflect the cultural needs of a participant, we need to be comfortable with a wide range of ideas and behaviors. Within the dementia literature and therapeutic practice setting, there is much emphasis on separating a person from their behavior. And yet, when we come from a perspective that behavior is a form of autonomy and agency, a way of communicating, then as professionals, we must be open, receptive, and settled in our own being in order to execute respect for ambiguity in behavior. We must be even more settled if our aim is to execute appreciation for ambiguity. And even more settled if we are to genuinely celebrate ambiguous behavior. Culturally competent counselors must move beyond a mark of tolerance and rather strive for appreciating or even

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celebrating ambiguity. It is a disservice to simply tolerate and even accept differing views, opinions, and actions. Instead, we can move along the continuum of diversity toward appreciation and celebration. Additionally, having the flexibility to individualize and tailor methods for each participant is a necessary practice in meeting people’s needs. No two people who are diagnosed with dementia require identical therapeutic approaches. While there are many important facets to the concept of cultural competency, for the purpose of this section I have focused on ethnicity, culture, spirituality, and ambiguity. Diversity is a living breathing entity that ebbs and flows as our global population shifts. As competent professionals, we should hold ourselves to a high standard of cultural competency where we are continually engaged in an exploration and learning process. It is also important to maintain these standards so that there are connected and coherent contributions to the plan, with a commitment to creating in response to the outlined action steps.

Ethical Considerations Providing human services necessitates that practitioners operate from a point of high ethical standards, even beyond the often-repeated maxim of do no harm. However, the totality of ethical practices exceeds this single principle and are more encompassing of a way of being. Indeed, nonmaleficense was included in the original Belmont report of 1979, which also outlined two other prescriptive judgments: beneficence and justice. In 2008, Beauchamp and Childress built on the ethical principles included in the Belmont report, by adding a fourth principle: autonomy. We have discussed this concept above and in other chapters in this book. While these four principles are adhered to and adopted by many professionals today, a fifth principle that is sometimes added to healthcare professionals concerning a professional relationship is fidelity. Let’s turn now to two ethical models that can be used for making ethical decisions in practice: Four-Box Method and The Five P Model.

Four-Box Method One model some professionals adopt when making ethical decisions is the Four-­ Box Method (Jonsen et al., 2010). Some have stressed the specificity of this method development applying to clinical medicine and argue this approach is not as useful or applicable in a therapy setting (Gamino & Ritter, 2009). Nonetheless, I outline particulars of this method here because I want you to feel even more competent than you already are as you help to strengthen the field of dementia health. This field will require you to interface with multiple systems and it is important you feel

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comfortable and equipped. A few systems you will be interacting with are a participant (self or others), a screening or assessment process, a diagnosis process, a treatment planning process, changing relationships with possible others, and internal systems (the self, including the sympathetic and parasympathetic nervous systems). Briefly, the Four-Box Method takes into consideration four areas pertinent to an individual’s overall well-being. The four areas for consideration are medical indications (such as diagnosis, treatment options), a participant’s preferences, quality of life, and contextual features (e.g., religion, family, race, ethnicity, gender). As we can see, the Four-Box Method can be quite useful in the decision-making process – ensuring that one area is not given too much attention while other important areas are potentially ignored. Now, let’s consider the particulars of another ethical model: The Five P Model.

The Five P Model The Five P Model essentially asks the four W’s and H. In other words, “who is the person – what is the specific ethical challenge to be resolved – where’s the ethical dilemma manifested – what ethical principles are the focus of the problem – how will the decision be made?” Using the following statement as our guide, we will walk through a recent dilemma with which I was faced. Holding at the core of our decision-making process is the following statement: “A person with a challenging ethical problem in a particular contextual place applies appropriate ethical principles in a deliberate decision-making process” (emphasis added, Gamino & Ritter, 2009). Now we will turn to a case vignette and apply The Five P Model to gain practical experience with this model.

Practical Application of the Five P Model Leonard, a male age 69, lives in a LTCC. Within this community there are graduated levels of care. His family told him that he will be moving to another area, into a different apartment, where he can receive additional care. Since his move his cost of living has increased as a direct result of receiving additional care. Leonard expressed concern about daily activities “they are all outside of my control. No one asks what I want to do. They all expect me to be a little soldier and when I am then everything is fine.” His self-efficacy rapidly diminished as did his self-reported interest in social activities (i.e., putting challenge, group exercise class, walks in the hall, talks with neighbors, etc.). Leonard says, “I don’t want to pay for something [additional care] that they are not actually providing. Besides, I don’t even think many of them know my name.”

In adopting The Five P Model for ethical decision-making, we would first ask and define the who. The person is 69-year-old male, with a law degree, and 40 years of employment with his dad’s law firm. He considers himself upper class. He is

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divorced yet has a close relationship with his ex-husband. He has three brothers. He reports having several friends who also live within his community. He reports gaining social support from all of his brothers. He is curious, has a sense of humor, and an intense passion for music. His mother and father died in 1998 and 2007, respectively. The problem we are presented with is he maintains legal capacity, although his oldest brother holds limited power of attorney. Leonard expresses concern that he is paying for a service that he believes is not being delivered. The place where he lives says caretakers offer support and he refuses to participate, so they cannot make him do something against his will. There has been a recent change in ownership, from a locally owned company to a national for-profit conglomerate that expresses a strong interest in increasing revenue. Some ethical principles to consider are his sense of autonomy, feeling respected in particular. Here, I am referring to beneficence. We can also consider the principle of justice and recognize that Leonard has a right to be treated fairly within the bounds of available resources. Furthermore, when arriving at a sound ethical decision, the process must recognize that treatment should not be limited based on disability or pathology. All too often a person and problem get conflated to the point where there is no distinguishing one from the other. Holding a nonjudgmental acceptance of the person apart from the problem is a necessary precursor for providing sound counseling (Rogers, 1957). When working with people who have been diagnosed with major neurocognitive disorder, this is of particular importance. Within the medical community, practitioners can become quick to operate from diagnostic standards, rather than consider the specific needs and requirements of an individual. One way I think about this is: “My name is not Dementia. My name is Leonard.” When we place an ethical dilemma within this context, then it becomes clear that we are dealing with a person with very individualized and unique needs. Leonard’s experiences with dementia symptoms are unique to him. Part of the responsibility of this specialized field of dementia health is for practitioners to also adopt the role of advocate. Some participants may live in age segregated communities and others live in the community. Ultimately, the person coming to us for support has a life to live. Thank them for inviting you along on their journey. If there are times they feel like they are not being heard or silenced by policies or practices, then we can take the appropriate steps to rectify the situation to ensure the highest quality of life they are worth living. From a Rogerian perspective, each individual is the boss of themselves. We are the authority of own life. Providing services from a person-centered perspective suggests a valuing of a participant’s voice. Another way of ensuring their voice is echoed is to operate from an ethically sound base. It is for this reason that I find a blending of ethical decision-­ making models to be helpful in the integrative services of dementia health. Independent of ethical models used to tease out the particulars of ethical dilemmas, there are some important areas to consider and exceptions to these areas. We will now consider confidentiality and three exceptions to confidentiality: danger to self, requirements of third-party payers, and neglect or abuse of vulnerable adults.

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Confidentiality Confidentiality is a necessary component or foundation to any successful therapeutic relationship. In other words, in part, the degree of success is determined by the quality of ethical obligation of protection a professional applies to data shared by participants. If one of the main purposes a dementia health professional serves is to model a secure attachment style  – one built on trust  – than holding information shared by participants with the utmost degree of confidentiality becomes straightforward. As clear as this relationship of protecting a participant’s information may seem, there are legal exceptions where a breach of confidentiality is necessary and legally mandated. There are circumstances where exceptions of confidentiality may arise and we can focus on the following three factors that relate to dementia health practices: danger to self, requirements of third-party payers, and neglect or abuse of vulnerable adults (Gamino & Ritter, 2009). Following an exploration of these three exceptions, we will consider a case example illustrating the perceived complexity of confidentiality and what to consider in situations where a breach of confidentiality may be necessary. We will then utilize The Five P Model to analyze the ethical dilemma in this case.

Danger to Self or Others The first area where a breach of confidentiality may arise is when a participant shares information that leads us to believe there is a danger to themselves. Maintaining confidentiality when a person reports they are going to engage in self-­ injurious behavior could be seen as an act of abandonment. We can draw on our understandings and experience with the ethical principle of beneficence. We have a duty to support a process that leads to a minimizing of as much suffering as is possible for a participant, and always must we extend the ability to comfort (Roberts, 1997). Of equal importance in protecting confidentiality is clearly stating when a duty to report is mandated by law. For example, when a participant asks, “Can I tell you something and will you promise not to tell anyone?” I always respond with: “Of course I value, honor and respect your privacy and at the same time, because I value you as a person, if you share that you are going to hurt yourself or someone else then I may need to share what you say.” A more specific example, using a composite vignette is Sheila. Sheila responded to my comment, “How could things be different?” with a hand gesture shaping her fingers into a gun and pointing it at the right side up her head, making a noise emulating a bullet being shot from a handgun, I then asked a follow-up question: “What are you suggesting by putting your finger to your temple?” She responded, “Blow my brains out. I think that would solve it.” It’s important to distinguish between suicidal ideation that is linked to a specific loss and imminent danger. In this particular instance, it was our sec-

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ond session. I asked, “What difference would that make on the situation we’re talking about right now?” She said, “Well, I would be dead. I wouldn’t have to deal with any of this shit.” I inquired, “Is this the first time you’re having this thought?” She said, “No. I think about it pretty regularly. If I kill myself then this would all just end.” I asked, “So it sounds like you’ve thought about this before. Do you know where you’d get a gun?” She said, “The one at my house locked in a drawer. My brother took my house key, though, so I just need to find the key that I buried in my yard. It’s simple. Take a taxi to my house. Tell the taxi driver bye. Find the key. And then bye to me, too.” In establishing specificity, intent and lethality, I asked Sheila her thoughts on sharing this plan with her brother. She said, “Go ahead. I know you care.”

The session ended with her promising not to act on her plan until after dinner (her self-identified time) when I would call her one hour after dinner or they could call me or the crisis line anytime in between. Upon leaving Sheila’s house I called her brother who informed me her house is for sale. He shared, “All of her belongings are out of the house, and it was staged two weeks ago. An offer has been made and most likely it will close within the week.” Here is a prime example, where knowing Sheila’s trauma history is important to collaborating with her on her current journey. When Sheila was 23, her mother died by suicide.

Third-Party Payer A second exception to confidentiality is in the requirements of third-party payers. It is sometimes the case where a third-party, an estate, insurance, or a Power of Attorney (POA) pays for services rendered. During the intake session, it should be shared with all involved parties that you will make progress notes at the end of each session. If agreed upon by the main individual, notes may be shared with the designated third-party. When a standard of open communication is set in the beginning, then misunderstandings are minimized or completely absent. An example of clear communication is when I share with a POA that there may be circumstances when information shared during a session is omitted from the progress log. Sometimes it is not necessary or appropriate to document an area discussed.

Neglect or Abuse A third exception to confidentiality is when either a participant discloses an occurrence of neglect or abuse, or where there is a suspicion of neglect or abuse occurring. Dementia health is a specialized field focused on the health and well-being of a vulnerable population: people living with dementia symptoms. Thus, there are unique areas to consider with respect to neglect and abuse. One way to support a

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person on their journey to the self and protect them from neglect or other forms of abuse is to maintain clear communication. Clear communication is mirrored in a systems approach to dementia health – where the health and well-being of all components are interrelated.

Application of Confidentiality For example, I was contacted by the POA of a recently widowed Asian woman in her 90 s to assist with a recent diagnosis of psychosis. I worked with this person weekly, for 2 years. After her death, several of her great-nieces contacted me and asked if they could read session notes so that they could get a different perspective on who their aunt was. I shared with them that when she was alive, we had multiple conversations regarding the sharing of her information. While I commended their loving interest, I felt it was unethical and dishonoring of our work. I shared with them that one of the areas their aunt and I discussed included data collected during our sessions for the purposes of academic presentations, publication in journals, or other forms of writing. This was something to which she consented. I shared with them that their aunt not only helped me in developing a therapeutic approach, but in turn their aunt was also helping to ease the suffering of others and ultimately lead to human flourishing. I also shared with them that anytime I submit for publication an article that includes information gathered during our sessions, her identity is protected and the possibility of traceability to her specific identity is obscured. I extended an offer to share with them a link where they could view articles I publish. Embedded in this conversation was the disclosure that there may be times where information discussed in an article may resemble their aunt, there is no guarantee data was collected from their aunt. I shared with them that their aunt is one member of a group of people living with dementia symptoms and with any group identity there are similarities.

Further Application of the Five P Model The Five P Model will be used as a method of analysis in the above offered case example. First, the participant is a deceased person to whom I extend loyalty and maintain a commitment to promoting her well-being. Knowing about the relationship between the nieces and the participant is not a factor in considering the extent of disclosure. I feel a strong obligation to the participant, independent from their living or deceased status. Second, the problem is protecting posthumously participant’s confidential information from unnecessary disclosure. Ultimately, the POA must authorize release of information, whom I first consulted when contacted by the nieces. Third, the place where services were rendered was the participant’s residential setting in a private for-profit home. The protection of privacy is mandated by

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HIPAA and state law. The principle of fidelity does not end when life ends. The nieces’ request would be considered general interest, in that their inquiry was provoked purely by curiosity (Berg, 2001). The process of settling what to do in this case seemed straightforward and clear-cut, as my commitment to the participant continues to live, even when she is dead.

Decision-Making Capacity It is important to have conversations about the specifics of what we want with our body and the celebration of our being before we do not have a voice that can be heard by people living in this world. In the field of dementia health, we might consider our professional role as one that is a member of a multidisciplinary care team with people at the center of their care and decision-making processes. It should be common and regular practice to consult with primary care physicians, surgeons completing a specific medical procedure (e.g., knee replacement), massage therapists, acupuncturists, social workers, counselors, physical therapists, and others, so long as the main service seeker approves. Ultimately, the main person with whom you are collaborating is guiding the direction of the journey. Based on the recommendations of the American College of Physicians “advance planning should occur as early as possible in the course of serious illness” (Qaseem et al., 2008). Furthermore, they recommend that end-of-life should be treated using psychosocial interventions. For the purpose of this section, we will explore two ethical principles: beneficence and autonomy – providing care and personal choice, respectively. Second, we will discuss the Five Wishes, using a vignette to understand the particular areas of consideration, and discuss the importance of assent as it relates to working with people diagnosed with dementia.

Beneficence and Autonomy As a dementia health professional, one who is tasked with extending care and concern to people either diagnosed with dementia or who aspire to protect themselves against future disease, it is important to take seriously the ethical principles of beneficence and autonomy. Both providing care and honoring personal choice is an important balance to be achieved within a person-centered, trauma informed therapeutic approach. In the context of working with people living with dementia symptoms, the application of autonomy is often not extended to them because it is assumed they lack the capacity to interact and make decisions about treatment (Gamino & Ritter, 2009). I wonder if having the capacity to make decisions is a necessary precursor for being treated as if one does have the capacity for personal choice? How might our medical and social systems be different if a framework of dignity was applied with all decisions being built around this framework? It seems

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to me that humanity, justice, and dignity are necessary precursors for flourishing to unfold. In other words, perhaps the concept of autonomy should be extended to all people regardless of capacity. In essence, we all have the capability of making personal choices. Perhaps there is a medical proxy to make final decisions and yet this should not preclude one from receiving care that is informed by autonomy.

Informed Decisions Promulgated by Aging with Dignity, a private, nonprofit organization, “Five Wishes” is a document intended to support people in making informed decisions about all areas of well-being at the end of life. We can use a composite vignette of Anne Reid Enoi to illustrate the application of key considerations of the “Five Wishes” document. It is my first wish to name Sirch Eksamed as my proxy in making healthcare and financial decisions. As such, in the event she necessitates consultation with a trusted third party, she has liberty to do so. My second wish takes into consideration specific medical treatments. For example, I do want CPR done. I do not want to be put on extended life support. A temporary ventilation, not to exceed 14 days, is acceptable, so long as permanent or irreversible damage does not occur as a result of removal. I do not want to be given any sort of pain-­ relieving medications, unless explicitly stated by me as indicated with an eye-blink or hand squeeze communication system. Otherwise, natural death should be allowed. My third wish is I desire to be oriented toward a window looking outside if it is absolutely necessary for me to be inside. Otherwise, my preference is to be outside. In the event of inclement weather, so long as I am warm, I am perfectly happy being outside for a period of time. My fourth wish is less about me and more about what other people need. Regarding how I’m treated by others, if people want to hold my hand, sing, have a party or do anything else, I want them to do what they need to do. I am perfectly okay with any of this so long as there are no strobe lights or, in the event that music is being played, no overly excessive bass. The greatest take away from wish five is that I want people to know I am not afraid to die. There have been times throughout my life where I’ve been afraid to live, however I graciously, with open arms, welcome the unknown – what we otherwise label as death. Perhaps what we see as the end is also the beginning of something else. Or maybe the end is final. With respect to the disposing of the body, please donate the brain for research. I am a registered organ donor. Please drain and donate all possible blood supply. If it is necessary to do anything with my body after these processes have been done, then please find any other utility for the whole or parts of the body. When all measures have been exhausted perhaps bury or burn any remaining amount the body. After the previously named three donation processes have been executed, any other decisions should be made purely from an economical perspective with as little resources being used. Aside from the specifics of the body, I wish for all interested people to dance in my second line.

Importance of Assent All involved parties are reminded that dignity and respect shall be extended to all involved parties and afforded the opportunity to offer assent. Permitting people to take a shared role in decision-making benefits the development as autonomous

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individuals, particularly at a time when legally they may be deemed to be nonautonomous (unable to have the capacity for medical decision-making). The process of assent affords people living with dementia the opportunity to learn the meaning of respect for others by asking someone if it is okay before attempting to do something with them. Additionally, we could consider the 50% risk rule. Although this concept was developed in relation to minors, I find this particularly helpful in the context of working with people living with dementia symptoms. The logic is as follows: if a participant is refusing treatment and the various risks of not receiving the treatment are less than 50%, then it could be beneficial to rule in favor of the participant (Diekeman, 2006). I would offer a complimentary line of reasoning that begins from the perspective of gains. If a treatment offers a greater than 50% gain to the person, this too shall be considered. Above all else, time must be spent understanding the presumed refusal. Refusal is a form of communication and should be respected just as is any other form of communication. In these last sections, we have explored the ethical principles of beneficence and autonomy in the context of dementia health practitioners serving as one member of a multidisciplinary team. Second, using the expressed wishes of Anne Reid Enoi, we were able to see the end-of-life desires using the document of the Five Wishes. Lastly, we discussed the concept of assent and securing it from people living with dementia symptoms.

Chapter Summary In order to maintain high standards of ethical clinical practice, therapeutic decisions made within a framework of cultural competence can consider (1) attention to self and other, (2) empowerment, and (3) meaning making and construction of reality. Acknowledgement and recognition of community membership is necessary when working with participants. As we discussed, people may belong to multiple communities and we considered four concepts: ethnicity, culture, spirituality, and ambiguity. We grasped a basic understanding of two ethical models that you can adopt in making decisions: Four-Box Method and The Five P Model. We also explored how perhaps blending of multiple models may be more useful or beneficial in integrative practice settings such as dementia health, where you are serving as one member of a multidisciplinary team. Any professional working within dementia health must be attuned to three ethical areas: confidentiality, decision-making capacity, and the concept of assent. Within the concept of decision-making capacity, we further delineated three areas. With respect to informed consent, we used a composite vignette of Anne Reid Enoi to understand the application of the “Five Wishes” document. In the next chapter, we will become exceptionally familiar with the particulars of Dementia Grief Therapy (DGT), an innovative and novel therapeutic approach that seeks to collaborate with a person – who is living with dementia grief – on their journey to acknowledge, validate, and integrate their losses into a coherent present self-narrative.

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Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Describe the application of beneficence and autonomy specifically to the field of dementia health. 2. Explain why clear communication is important to the therapeutic alliance. 3. Name two reasons why securing accent is important.

Further Inquiry To what extent can a framework of having the capacity to make decisions about personal choices be extended to life wishes? How might our medical and social systems be different if a framework of dignity is applied with all decisions being built around this framework?

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Magnusson, D., & Stattin, H. (1998). Person-context interaction theories. In W.  Damon & R. M. Lerner (Eds.), Handbook of child psychology: Theoretical models of human development (pp. 685–759). Wiley. Mani, L. (1998). Contentious traditions: The debate on sati in colonial India. University of California Press. Merriam, S., et al. (2000). Power and positionality: Negotiating insider/outsider status in multicultural and cross-cultural research. Adult Education Research Conference. Available from https://newprairiepress.org/cgi/viewcontent.cgi?referer=&httpsredir=1&article=2241&contex t=aerc. Accessed on November 6, 2021. Okun, B. D., & Suyemoto, K. L. (2012). Conceptualization and treatment planning for effective helping. Brooks/Cole. Qaseem, A., Snow, V., Cross, J. T., Jr., Forciea, M. A., Hopkins, R., Shekelle, P., Adelman, A., Mehr, D., Schellhase, K., Campos-Outcalt, D., Santaguida, P., Owens, D.  K., & American College of Physicians/American Academy of Family Physicians Panel on Dementia. (2008). Current pharmacologic treatment of dementia: A clinical practice guideline from the American College of Physicians and the American Academy of Family Physicians. Annals of Internal Medicine, 148(5), 370–378. Rigazio-DiGillio, S. A., et al. (2005). Community genograms: Using individual, family, and cultural narratives with clients. Teachers College Press. Roberts, R. G. (1997). Reducing malpractice rish. In M. B. Mengel & S. A. Fields (Eds.), Introduction to clinical skills: A pateint-centered textbook (pp. 355–367). New York: Springer Publisher. Rogers, C. R. (1957). The necessary and sufficient conditions of therapeutic personality change. Journal of Consulting Psychology, 21(2), 95–103. Welfel, E. R. (2015). Ethics in counseling and psychotherapy: Standards, research, and emerging issues (6th ed.). Thomson Brooks/Cole.

Chapter 6

A Proposed Model of Therapy: Dementia Grief Therapy

Key Points • Emphasizing human dignity in the therapeutic process of dementia health. • Use of attachment dimensions to understand the body–brain relationship. • Significance of acknowledging grief component in living with dementia symptoms.

When grief meets dementia, a shifting of attachment dimensions can augment or hinder flourishing – for people as well as communities. In this chapter we will build on the significant contributions of Kitwood’s work of the self, personhood, and human dignity, discussed in Chap. 3, as well as the work of researchers on developing models of dementia grief, discussed in Chap. 4. This novel therapeutic approach, Dementia Grief Therapy (DGT), is situated within a process of loss recognition, validation, and integration. The theoretical underpinnings of this intervention, as was discussed at length in Chap. 4, draws from existentialism, feminism, attachment theory, Adlerian psychotherapy principles, and yogic science or contemplative practices. At the core of DGT is an understanding of life from a person-centered and trauma-informed perspective that shapes and informs points of intersection on the loss–love axis. We will become intimately familiar with overlapping and distinct clinical features of DGT. Rather than separate the body into parts: cognitive health, physical health, gut health, and so on, we will begin from a place of attachment identification as one necessary component to consider when discussing dementia health. As was mentioned in the beginning of this chapter, and discussed in previous chapters, grief and dementia intersect and are informed by attachment dimensions. We will explore further how grief (sympathetic–parasympathetic axis) interacts with dementia (loss–love axis), by considering the role of attachment dimensions. We will also discuss the roles of aging, trauma, and death and how these are in dynamic feedback loops within the lived experience of dementia symptoms (depicted in Figs. 6.3 and © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_6

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6.4). We will then discuss the necessary and distinct features of DGT (see Fig. 6.5 for session format).

Background The transitory experiences of dementia may be more fully understood by maintaining a standard of flexibility and relying on a right’s based, trauma-informed, integrative therapeutic approach, DGT. There are necessary components to the proposed model that overlap with other therapeutic approaches, such as treatment planning (informed consent, intake, process of change, monitoring progress) and note taking. DGT uses the subjective, objective, assessment, plan (SOAP) format of note taking. It is worth noting that SOAP notes have a rich history of use (Weed, 1968). Additionally, there are five distinct clinical features that differentiate DGT from other treatment modalities: collaborators’ orientation, session location, physical activity, nature, and grounding work. One aim of this chapter is for you to comprehend a novel approach, have the necessary knowledge to implement DGT in your practice and to begin to generate a robust data set of dementia grief experiences, as informed by people living with dementia, with all of us across the globe measuring and investigating similar data points. Although DGT is by no means intended to be a manualized method of treatment of BPSD (behavioral and psychological symptoms of dementia) or dementia symptoms, standardized data collection of existential, movement-orientated therapy strengthens the empirical database of this proposed therapy model. DGT is an exploratory, nonjudgmental, integrative, person-centered approach used to support a participant or collaborator along their journey to the self. It begins from the perspective of human dignity as an end rather than a means. Refer Fig. 6.1 to see the foundation of DGT beginning with human dignity (located at the bottom of the figure and building upward). This is the absolute necessary base from which the process of grief integration can occur. The person interacts with a collaborator that respects a pluralism of ideas and an appreciation for all people. These ideas then interact, shape, and form a person who is living with dementia symptoms. When the person’s values are respected and appreciated, then their agency and identity are strengthened. With a strong sense of agency, then the person further strengthens their own respect, leading to an individual living a meaningful life. As discussed earlier, there is a difference between treating a person as an end and as a means. Treating people as a means is a dehumanizing, objectifying, and demoralizing action. It focuses on others’ needs and not the needs of the person living with dementia symptoms. It also relegates the person living with dementia symptoms to the periphery of their own narrative. Conversely, treating people as an end suggests an acceptance, appreciation, and humanizing perspective of their very being. It legitimizes the feelings of the person living with dementia symptoms and places them at the center of their narrative. DGT promotes the significance in recognizing the overlapping areas of well-being: physical, emotional, social, spiritual,

Background

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Fig. 6.1  Model of change

and intellectual (Hettler, 1977). There is a recognition of the interconnectedness among patterns of thoughts, emotions, and behaviors within the context of lifespan experiences. This therapeutic approach aims to illuminate the inherent strengths of each participant for a participant to utilize their own identified strengths to fully integrate losses into each unfolding or pivotal life change. Once integrative processes begin, then a coherent life narrative is formed, and a person can build on this to contribute valuable functions in society. In other words, peoples’ capabilities determine their functions. People have a range of abilities to convert their means into valuable opportunities (Sen, 1992). For this reason, it is imperative to view each person as an end rather than as a means, because interindividual differences exist within humanity and especially among people living with dementia. Further, as has been mentioned in previous chapters, appropriate therapeutic techniques necessitate a pluralism of values for adequately recognizing the ranges of abilities among people

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living with dementia symptoms. We will now turn the conversation to a general systems theory and understand more about the dementia–grief relationship, contextualized by attachment dimensions.

 ttachment Dimensions: Loss–Love Axis A and Parasympathetic–Sympathetic Axis It could be useful to our exploration of attachment dimensions to consider a general systems theory and the role dynamic feedback loops might play in living with dementia symptoms (Orianne et al., 2017). All of life is an exchange of relationships and considering the qualities of multiple attachments can offer a more accurate and fuller picture. As such, there can never be one singular antidote or cure for dementia symptoms. Scientific inquiry and general thought have been conditioned to favor casual reasoning. For example, when we read that nerve cell damage causes Alzheimer’s disease (AD), researchers are relying on causal reasoning (Kuźma et al., 2018). Instead, we must investigate the process of not only the roles cells play in human life but also the relationships between these roles, so that people living with dementia symptoms may feel a bit more settled, less fragmented, and more integrated. As Ernest Manning, a Canadian politician once espoused, we must acknowledge the interactions between the parts that together comprise the functioning of the whole system (1967). Or whole system dysfunction as may be the case with some people living with dementia symptoms. Alison Warren, at George Washington University School of Medicine, summed it up beautifully: when she said dementia is speaking multiple languages and necessitates a multilingual response (2023). We can now transition from a brief discussion of general systems theory and understand more about the dementia–grief relationship. We will return to a systems approach in a future section, when we discuss the case formulation process, for now though, we will expand on how grief, measured along the sympathetic–parasympathetic axis interacts with dementia, measured by the loss–love axis. To understand the dementia–grief relationship from the perspective of attachment dimensions, we will now unpack three layers of a person living with dementia: aging, trauma, and diagnosis. We will investigate the body–brain relationships and the attempts to achieve well-being within four different layers: aging, trauma, dementia, and death (depicted in Fig. 6.3). We began this conversation in Chap. 2, continued it in Chap. 3, and will expand on it here for the purpose of further situating DGT. Within these layers we will look at four systems in the body (brain, lungs, kidneys, and liver  – depicted in Fig.  6.4). As we have heard anecdotally in the vignettes thus far, with the proper conditions, the self can experience entropy and become extinct. One way for explaining the shaping of environments is through attachments (Ainsworth & Marvin, 1995). When other attachments form, then the self can be strengthened, and homeostasis can exist within and among four systems of the body (brain, lungs, kidneys, and liver). Refer Fig. 6.2 to grasp how plotting of the ordered pairs (love–loss, sympathetic–parasympathetic) lead to movement from thriving to extinction.

Attachment Dimensions: Loss–Love Axis and Parasympathetic–Sympathetic Axis Fig. 6.2 Dementia–grief dimensions

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LOVE DEMENTIA BODY

SECURE

PREOCCUPIED

PARASYMPATHETIC NERVOUS SYSTEM

SYMPATHETIC NERVOUS SYSTEM DISMISSINGAVOIDANT

FEARFULAVOIDANT

LOSS DEMENTIA BODY

Fig. 6.3  Separate layers (aging, trauma, grief, death) and internal attachments

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Fig. 6.4  Integration of separate layers into coherent present self

Aging Within the brain, as we age, it is estimated that 50,000 brain cells die each day (Tuarez, 2022). This equates to about 20 million cells a year. For a person age 85, this equates to roughly 1,100,000,000 cells lost. We are equipped, on average, with approximately 86 billion cells. The health of the brain and the body extend beyond purely the quantity of cells. We must also consider quality and the synaptic connections between the cells. We discussed this previously from a systems perspective. Now, let’s move to the body and explore the lungs, kidneys, and liver. There are three main ways our lungs to age. First, there is less air flow, a weakening of respiratory muscles, and lung elasticity. Second, there is less gas exchange and a

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thickening of alveolar walls. Third, we see decreases in immunity response and diminishment in the cough reflex. Throughout the lifespan, physiological changes are natural, and the kidneys are not immune. Structural, functional, and molecular changes are a natural concomitant of the aging process from less urine elimination to glomerular basement membrane increasing in thickness to excess cells to increased protein production (Fang et al., 2020). Interestingly, of all the body’s organs, it is suggested that the kidneys undergo the greatest amount of change throughout the lifespan (Long et al., 2005). One example is a process of hardening of the kidneys, which is seen in 74% of people ages 65 and greater, compared with their counterparts who are less than age 29, where the rate is 2% (Dybiec et al., 2022). Do all kidneys across the globe age at the same rate? One study looked at Black Americans and White Americans, and even though the former group was represented at less than a quarter of total study population (19 and 43, respectively), two findings are significant (Marcantoni et  al., 2002). Black American study subjects, based on results from biopsy, had elevated levels of serum creatinine. The muscles produce a waste product, creatinine, that gets filtered by the kidneys. When levels are elevated, this puts stress on the kidneys, requiring them to work overtime. And so not only did Black American study subjects present more severe diminishment in kidney functioning, but they also presented kidney damage at a younger age (Grams et al., 2014; Hughson et al., 2014). These findings highlight the racial disparities present in the process of aging. Simply put, according to the National Kidney Foundation, Black Americans are diagnosed with kidney disease at a rate of more than 3 times White Americans and Latino/as have a nearly 1.5 times increased likelihood of being affected by kidney disease (National Kidney Foundation, 2023). These racial inequities are not limited to kidney health. Another important organ that also withstands the pangs of the aging process is the liver. The liver serves many important roles in the body from metabolism of carbohydrates to being a glycogen reservoir to detoxification processes, and more (Radonjić et al., 2022). Continued studies highlight the resilience of the liver to the detrimental effects of the aging process (Hunt et al., 2019). Additionally, liver volume fluctuations are a natural part of bodily cyclical processes and sometimes decreases in volume are attributable to diminished glycogen stores. Other times this is because of the natural aging process (Morsiani et al., 2019). Keep in mind, we also see these fluctuations of liver volume with the aging body, ranging from 20% to 40% (Jin et al., 2020; Kim et al., 2015; Schmucker, 2005; Le Couteur & McLean, 1998). As we can see, the natural aging process or senescence is system wide. By no means is this to suggest that gradual deterioration is the entire picture of aging. It is just important to keep these changes in mind as we begin to look at these same areas within the mind–body landscape as we travel on over to another layer within with changes occur – trauma and grief.

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Trauma and Unmetabolized Grief Although we discussed at length in Chap. 2 how trauma has a significant impact on the body–brain landscape, and in Chap. 3, the effects of unmetabolized grief, we return now to the topic for the purpose of situating the mediating role of trauma and grief on systemic disequilibrium. We will also further explore internal attachment patterns interacting within this layer. Although it now is known that the brain regulates many physiologic functions that are commonly disrupted by the stress of trauma or grief, such as hormones, heart rhythm, and immune responses. The extent to which these disruptions may affect health continues to be a field of discovery. We could also flip this on its head and question: Is what we are seeing in the brain a byproduct or symptom of what is going on in the body? Now, when we apply this understanding of gut–brain highway, we can see the ubiquity of traumatic impacts on the system. Some recent research on effects of weapons firing (commonly referred to as low-­ level blasts (LLB)) on the brains of mice indicates many changes from myelinated axon fragmentation to elevated tau levels (Konan et al., 2019). LLB has been identified as sound that registers at 74.5 kilopascal (kPa; Elder et al., 2014). When we convert this to decibel (dB), this is equivalent to about 131 dB. Typical human yelling or screaming has been registered at a range of 80–125  dB (Zatorre & Belin, 2001). There are human subject studies on effects of repeated screaming, although typically in the 95 dB range. When exposed at this level, study participants subjectively reported feeling more anxious and presented quick startle rates (Patel et al., 2016). A recent study sought to test effects of low-intensity screams and physiological changes and found that even at lower-level exposures, subjects reported higher levels of anxiety (Beaurenaut et al., 2020). We are all too familiar with the neurobiological effects of anxiety and grief (refer back to Chap. 3). Now let’s look at two other organs in the body: kidneys and liver. We will also consider long-term effects of childhood trauma on cortisol stress reactivity in adulthood and relationship to the occurrence of depression. When confronted with trauma, or living with a history of trauma, the typical measure of change within the kidneys has favored assessing cortisol levels (Suzuki et al., 2014). This renders an incomplete picture. Another part of the picture is the role of oxytocin metabolic rate within the kidneys. Historically, this has taken a back seat in the neurobiology of trauma and yet is emerging with increasing recognition and interest (Quintana & Guastella, 2020; Austin, 2018; Hughes et al., 2017). Ozieh and colleagues investigated the relationship between a history of adverse childhood experiences (ACE) and decreased kidney functioning as well as death from chronic kidney disease. Analyzing records of 1205 adults from the Midlife Development in the United States (MIDUS) dataset, collected between 1995 and 2014, they determined those with ACE were at a 64% increased all-cause mortality compared with the no ACE counterparts (Ozieh et al., 2020). Study after study has suggested kidney functioning is dramatically impacted by trauma. At the same time, the protective effects of oxytocin are far reaching from anti-inflammatory to antioxidant properties. And yet, in the bodies of people with a history of trauma, these

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life extending luxuries are not available (Carter et al., 2020). The impact of trauma on soft internal organs is significant. We see similar effects on kidney functioning in people grieving the death of their partner (Bidulka et al., 2021). Grief can equate to death when people’s kidney functioning is already compromised. Research has continued to suggest the liver takes the brunt of much assault that trauma has on the body (Winter et al., 2009). Trauma exposure by itself decreases liver functioning, and when we add the effects of behaviors that are typical of some trauma survivors – risky sexual activity and substance use – there are compounded affronts on liver functioning (Dong et al., 2003). It has only been in the past few years that there has been a recognition of whole systemic effects of grief on the liver and just how detrimental trauma is on liver functioning (Joung et al., 2019). In short, the cascading whole-body effects are as follows: stress impedes the immune system, which results in inflammation in the liver, which causes hyper filtering activity within the liver, which causes sympathetic nervous system activation. Within a healthy functioning system, the liver clears excess lactic acid and allows the body to be fully oxygenated. However, one result for someone experiencing grief or trauma can be the liver’s inability to perform this filtering or cleansing process, resulting in lactic acidemia, or decreased oxygen to other systems in the body (Stuckey et al., 2020). The liver may be a single organ and yet, the liver is depended upon and is also dependent on other systems. As was mentioned in the previous section, systemic changes with trauma and grief are not limited to the areas we just covered. There is much more to the picture. There are many factors or protection, resilience, and empowerment that also accompany the aging–grief–dementia journey (BartrésFaz et al., 2020). We will now turn toward a third layer in the mind–body landscape: dementia.

Dementia The changes that we see in the brain of someone living with dementia symptoms have been covered extensively in the literature as well as elsewhere in this book. For this section, the most important piece to keep in mind is the way dementia symptoms affect communication between neurons. As we discussed in the above two subsections, this space between brain cells, the myelin sheath around axons, is key to dementia health. Now we will move out of the brain and into the body and look at the same three systems: lungs, kidneys, and liver. There are respiratory manifestations of dementia symptoms such as sleep apnea, shortness of breath, and heart arrhythmias (Vicente et al., 2018). We can also view this from another direction in that reduced lung functioning and midlife lung disease increases rates of diagnostic dementia and mild cognitive impairment. Findings from 14,184 people from the Atherosclerosis Risk in Communities study, followed for 2 years (1987–1989), suggest subjects’ cognitive functioning declined over this period when they were also affected by compromised respiratory functioning (Lutsey et  al., 2019). Other studies present similar findings (Dodd, 2015; Pathan

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et al., 2011; Dodd et al., 2010; Hung et al., 2009). Other ways that the respiratory system can be affected by dementia are seen in sleep-disordered breathing. This results from intermittent hypoxia where after a period of not breathing, breathing then resumes (Ulland et al., 2021). One effect of this process is a ceasing of continual oxygenation to the body’s organs (including the brain). There are multiple ways to interact with the breath: we can inhale; we can also retain the breath on the inside of the body; we can change the number of inhalations we take in a 60-second period. These are simply a few ways we can interact with the breath. Each of these breath iterations are going to produce different effects on the body. Some research suggests that vagus nerve stimulation occurs when breathing occurs at a rate of 10 seconds per breath segment (Lehrer & Gevirtz, 2014). One recent study, out of the collaborative efforts of researchers from USC, UC Irvine, and UCLA, instructed half of the study participants to engage in breathing that stimulated the vagus nerve and found decreased concentrations of amyloid-beta peptides in the blood (Min et al., 2023). Amyloid-beta is thought to have one strong causal link in the development of AD. I would like to take a moment and introduce some fascinating work going on in Ted Dawson’s lab at Johns Hopkins, highlighting the interrelatedness of processes in the mind–body landscape. His lab was able to show the process of misfolded proteins (the ones thought to cause Parkinson’s) moving from the stomach to the brain resulting in changes in physical and cognitive functioning. In this study, dopamine was injected into the stomach of mice and one resulting effect was a witnessing of misfolded proteins in the brain. It is believed that this transference occurred through the vagus nerve (Kim et al., 2019). Previously, we talked about the interplay of cognitive health and kidney health. There is evidence that diminished kidney functioning equates to reduced cognitive functioning and dementia diagnosis (Etgen, 2015). The dopaminergic system is one pathway for understanding the effects of dementia on kidney functioning, as well as the role of the kidneys in determining healthy cognitive functioning (de Donato et al., 2022). Let’s now see how another organ, the liver, functions within the body of someone living with dementia symptoms. As has already been established, at a base level, the liver plays an important role in system functioning and maintaining homeostasis. One physiological role of the liver can be seen in the process of proper lipopolysaccharide (LPS) detoxification, which is a crucial step in protecting the body’s immune system, so that it can effectively ward off invasion of bacterial infections. A recent study detected elevated levels of lipopolysaccharide binding protein (LBP) in 352 people living with a diagnosis of Parkinson’s disease (Zhao et al., 2023). In other words, when LBP levels increase, then inflammatory activity increases and the role of LPS in protecting cells is inhibited. As a side, this finding has the potential for holding future diagnostic characterization of neurodegenerative pathways. We just explored how systems (brain, lungs, liver, and kidneys) within the mind– body landscape are shaped, transformed, and constricted by three processes – aging, grief or trauma, and dementia. The layer of death must also be acknowledged, although it follows a different trajectory from the above three layers. We will

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discuss the layer of death in a below section. Refer Fig. 6.3 for a diagram of these interactive and overlapping systems contained within each process. Now we can apply a relational perspective to the roles attachment dimensions play in establishing and reestablishing internal systemic homeostasis. What happens when we layer these one on top of the other, on top of the other? For example, on one layer we have the liver–grief relationship, brain–grief relationship, respiration–grief relationship, and kidney–grief relationship and on another we have the same four areas shaped by and informing dementia. For reference, see Fig. 6.4 for a depiction of the integration of the systems depicted in Fig. 6.3.

Relational Perspective of Internal Attachments With the above three discussed processes or layers (aging, trauma, and dementia), now we can investigate the depths of the relationships between the brain and the body by using attachment dimensions. For example, the relationship between the liver and the brain in dementia could be considered secure when both are functioning optimally. If we understand a neuroinflammatory response to be a protective mechanism, then this too could be labeled a secure relationship. Yet, in this instance the secure style relationship produces less than optimal thriving because the inflammation in the liver creates inflammation in the brain, which translates into reduced cognitive functioning such as deficits in reasoning, spatial conceptualization, and memory recall. Therefore, as we understand the consequences of increased levels of LBP and blocking the capacity for LPS to protect cells against neuroinflammation, then we might in the larger system context, label this an avoidant style attachment. Within dementia health, we need to consider a diagnosis within this framework by acknowledging the forces of interacting systems with interweaving positive and negative feedback loops contained within each layer. It is also important to note that much like with diagnosis of a terminal illness, people receiving a diagnosis of dementia also have a layer of considering death. A participant’s relationship to dying can also be understood within the context of attachment dimensions. Within this layer are combined all of the individual ideologies, social understandings, and cultural expectations surrounding death and the bodily systems affected by these processes. We will not walk through each potential attachment dimension that exists within the layer of death; however, we can see attachment development occurring within this layer that parallel all other layers. When there is an insecure attachment between the liver and the brain within the layer of death, we can draw from findings of studies concerned with the effects of stress. When stress is introduced to the system, the sympathetic nervous and adrenocortical systems are activated, releasing epinephrine and norepinephrine, causing toxicity in the blood (Joung et al., 2019; Matheson et al., 2000; Goldstein & Kopin, 2007). This blood, being filtered through the liver, causes this organ to be unnecessarily taxed, tissues are damaged, and unable to adequately filter all blood supply, thus affecting the blood traveling to the brain. The brain relies on the liver to deliver

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a clean supply of blood in order to fully oxygenate the brain’s functions. The body’s ability to regulate blood pressure at consistent levels is dependent upon the baroreceptor reflex. In other words, when blood pressure increases then cardiac output decreases, thus a negative feedback loop. This feedback loop is disrupted when toxicity increases in the circulating blood, resulting in parasympathetic nervous system suppression. In the absence of parasympathetic nervous system excitation, some digestion, sexual arousal, and urine excretion results are hampered.

Section Summary We have explored multiple systems interacting. Within the grieving body there are multiple simultaneous relationships. To limit our discussion to the ones reviewed above, they are as follows: the liver–grief relationship, brain–grief relationship, respiration–grief relationship, and kidney–grief relationship. This is one layer of relationships. There are three other layers: aging, death, and dementia. All of the relationships within layers interact with the relationships within other layers: helping and hindering the overall functioning of the entire bodily system. It is helpful to acknowledge the attachments within each layer in order to fully conceptualize mind–body functioning. In other words, the effects of a denial of death directly impact internal systemic functioning. One result is a different lived experience with dementia, from another who, all other areas being equal, maintains a secure relationship with death. With all of these findings on the detrimental effects that aging, trauma, and dementia each have on the body, as well as a setting of the stage of avoidant or insecure attachments between say the kidneys and the liver, this is not to suggest an unmodifiable situation: quite the contrary is the case. As we have seen in previous chapters, there are great degrees of malleability in bodily systems, numerous methods for enhancement of myelination, and real potential for most bodies everywhere to thrive in a state of equilibrium. We must begin from a place of establishing secure attachments within the systems of our bodies before joining another on their journey (Menakem, 2017). Then, through the establishment, modeling, and reestablishment of a secure relationship – facilitated by the collaborator orientation of DGT – other bodies can engage in the integrative process where all bodily systems are operating from the foundation of secure relationships.

Proposed Model: Dementia Grief Therapy The development of a solid therapeutic model necessitates adherence to sound ethical practices. While we will discuss this at length in a future chapter, it is absolutely necessary for a professional to actively engage in a participatory process of informed consent. Therefore, we will discuss the process of informed consent in this section, as the start of the proposed therapy model.

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Informed Consent It does not meet the standards of high ethical practice to simply include in the intake process a form titled informed consent and have a participant sign the document without an open and ongoing conversation about consent. Within the context of practice, there are four necessary components in the process of obtaining informed consent: beneficence, nonmaleficence, autonomy, and justice (Varkey, 2021). Furthermore, the crux of the active participatory nature of informed consent suggests an understanding of biparty obligations in a two-fold manner: full disclosure and free choice. Traditionally, these two areas are framed within the context of professional and client, respectfully. Yet, I see the absolute necessity of both considerations being extended to each participating party. Structuring the relationship in this way lends itself to the development of a foundation of collaboration, rather than viewing knowledge from a hierarchical perspective where one is regarded or valued more. Both are necessary and important in the process of human flourishing. Due to the nature of the specialization of dementia health, it could be argued that this group of participants are considered disabled persons, and the obtaining of informed consent needs to be a reasonable adult third party who is capable of making decisions on behalf of the person living with dementia symptoms. Since we are talking about dementia health more broadly, it may not always be the case that a person is living with disease diagnosis. For example, a person may experience dementia symptoms, express concerns after their Annual Wellness Visit (AWV)1 was completed, or during their AWV it was noted they are living with five modifiable risk factors for later life dementia development (e.g., smoker, obese, history of concussions, high blood pressure, and limited to no daily physical activity). In this case, working with a personal trainer skilled in dementia health would be appropriate. Conversely, as has been noted, the intention with the application of DGT is in the post-diagnosis process. Providing ethically sound practices can be checked and balanced using The Five P Model that we will explore in Chap. 9. We will meet Leonard and use the specifics of his situation to apply The Five P Model and the process of obtaining and maintaining informed consent. Embedded in this case vignette will be three key components: formalizing consent, welcome versus tolerated, and portability. For now, let’s move to the second step of DGT: intake.

 Annual Wellness Visit is a requirement in the U.S. by Medicare recipients and is intended to develop or update a personalized prevention plan and perform a health risk assessment. Of the twelve components of this visit two are assess psychosocial risks (such as grief and trauma) and detect cognitive impairments. Beginning in 2024, Social Determinants of Health Risk Assessment. Specifically, this assessment must follow standardized, evidence-based practices and ensure communication aligns with the patient’s educational, developmental, and health literacy level, as well as being culturally and linguistically appropriate (insert link: Federal Register :: Medicare and Medicaid Programs; CY 2024 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment and Coverage Policies; Medicare Shared Savings Program Requirements; Medicare Advantage; Medicare and Medicaid Provider and Supplier Enrollment Policies; and Basic Health Program). 1

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Intake Once determining the appropriateness and compatibility of services provided by a professional and services sought by a participant, then an initial intake and assessment session should be scheduled. It is during this time that you will conduct a clinical interview. At the conclusion of this initial session, you will be able to describe a three-fold process: why a participant is here, at this moment, and for what reason. Beyond garnering important information on how you can best join a participant on their journey, other purposes of the intake are to lay the foundation and setting the tone of the therapeutic work to be done. It is important to create an environment that invites open communication and dialogue and presenting as transparently as possible the processes that might occur. Transparency in approaches is not isolated to the intake session, rather extending beyond to what can be expected in future sessions. There are many important components to consider when conducting an initial intake assessment. Beyond gathering important data to be utilized in the formulation of treatment planning and measuring outcomes, the initial session sets the stage for how information is communicated. The initial session is more than simply an information-gathering session. It really sets the tone for the entire therapeutic relationship and also serves as an opportunity for interventions to begin from the onset. Adopting a strength assessment approach is one way to communicate a professional’s emphasis on strength rather than deficits. Because this stands in such contrast to typical deficit focused approaches in dementia health, there is a possibility of emancipating power transferred to a participant who explains their health from a different perspective (Li et al., 2021). In the below three subsections, we will consider three areas that might be explored: medical history, participant strengths, and motivation to change. Medical History You might find yourself equally interested in learning about a participant’s physical medical history as you are about their other characteristics (e.g., subjective distress, problem complexity, social support, and coping styles). It may be that there are times when cognitive shifts are quickly pathologized, when it could be a matter of urinary tract infection (UTI), dehydration, medication interactions, or other symptomatology. Understanding medical history is particularly important when incorporating into sessions physical exercise and yogic practices, both of which can have a direct and immediate impact on the central nervous system. Further, knowing any physical limitations is just as important as obtaining information about cognitive limitations. Knowing this information allows you to apply the most appropriate intervention techniques. Additionally, having this information is important to practice within your scope of understanding and knowing when best to refer a participant to another allied health professional.

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Before discussing the importance of incorporating into the intake discussion, a detailed exploration of participant strengths, we can consider clinical indicators of functional impairment. Maruish suggests that treatment outcomes should be developed in the context of understanding social and environmental functionality (2014). Gaw and Beutler suggest that functional impairment has a direct impact on participant outcomes to the extent that when a person is affected in the interview shapes treatment goals (1995). You might also consider asking: How does the identified problem strengthen your functioning? A person and their presenting concern can be viewed in relational terms. It is important to understand the space a person holds for their problem. One way of investigating this is to listen to the language used. Perhaps, it is most efficacious to parse out functional impairment from participant strengths. In other words, allow time for an adequate assessment in a recognition of clinical indicators of functional impairment to have their own designated space in the clinical interview and then separately identify participants’ strength as a way of providing a multifaceted perspective of a person. Participant Strengths Lehnhoff developed a strength focused assessment where he focuses less on deficits (1991). Beyond the benefits of including an exploration of participant’s strengths, there is also vast therapeutic value rendered when a participant considers their strengths. Moreover, adopting the technique of utilizing a strength focused assessment serves a dual purpose. In addition to inclusion in the assessment and a framing of the conversation, it can also offer an intervention before treatment actually begins (Maruish, 2002). This maneuver speaks to taking advantage of time and optimizing the shifts that participants desire. We will meet Lorna in the following vignette to understand participant strengths and the process of intervention initiation that can begin prior to formal treatment. Lorna is 89 years old. She identifies as “being selfish my whole life by always expecting other people to wait for me while I get ready. I often say, ‘Wait. I’m not ready yet.’ I know it’s rude and self-centered and I shouldn’t always expect people to wait, but I don’t know another way to be. I just have always been this way. Maybe it’s part of my character. It’s a problem though because my friends are really getting tired of always having to wait for me. I feel so alone. I just want them to love me for who I am. And now I have dementia and they’re really not going to love me.”

In the intake session, Lorna repeatedly referenced feeling an absence of love. I asked, “When you make plans with your friends for 5:30 and you tell them you are not ready and they wait for you until 5:40, could them waiting be an indication of their love for you?” Lorna remained silent for a moment and then said, “Wow. I guess I never thought to question why they never leave and then also connect this to them loving me. I’ll have to think about this.” Including a questioning of language selection and offering a relational model for Lorna to understand her behavior and actions allowed her to walk away from our intake session with an alternative perspective to consider. Additionally, by engaging in this thought experiment, this

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opens the potential for strengthening Lorna’s motivation for change. The momentum for reshaping one of Lorna’s stated problems begins in the intake session. This maneuver also communicates a commitment on the collaborator’s part. Motivation for Change When a participant is already feeling vulnerable and seeking support and then a professional begins from a deficits approach, the likelihood of a commitment to continue a journey to the self can greatly diminish (Li et al., 2021). Additionally, it is important to keep in mind there are many reasons people are motivated to make changes. It could be a matter of wanting to strengthen interpersonal characteristics, to feel just a little more settled, or to learn to trust the self. At this point we might also consider a related component of readiness to change. These two components – readiness and motivation – are intricately connected with the stage of change (precontemplation, contemplation, preparation, action, and maintenance), thereby augmenting a person’s motivation to change and vice versa. For example, Prochaska lists one of the distinguishing features of the preparation stage is decision-making (Prochaska & Velicer, 1997). Similarly, as noted by Morey in his seven indicators of motivation to change is the ability to turn inward and bravely look into a mirror of curiosity about one’s own behavior (1999). It seems that in evaluating one’s motivation to change it is much more of a fluid process that continually informs and is informed by the identified stage of change. As we can see, the intake and assessment session is more than an administrative task to be checked off. Depending upon a professional’s orientation, the power of the assessment lends itself to introducing interventions techniques prior to the formal treatment process beginning. I have offered three areas to consider: medical history, participants’ strengths, and motivation to change. Most importantly, adopting a strengths assessment perspective is key to setting the tone for proceeding sessions and offering participants an opportunity to frame, what they may have historically thought of and heard discussed as deficits, in a new language set. The third step in the proposed model is the creation of a treatment plan.

Treatment Plan Treatment plans can be viewed as a road map needed by a passenger and driver who are embarking on a driving road trip. Certainly, one can traverse any geographic landscape without a detailed map of highways and byways and instead opt for utilizing one’s internal compass to direct which roads to take. On the other hand, if the goal is to travel from, say, Charleston, South Carolina to the Florida Keys, then knowing which roads to take could be very useful. At the same time, comfort with both using and abstaining from the map are important. If we say that the City of

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Charleston is a state of grief, and the Florida Keys represents optimum well-being, then much like a road map provides an overview of possible routes to take, a treatment plan allows both involved parties to understand and delineate a specified plan. Treatment planning is not only a necessary component of clinical service delivery for billing and reimbursement on Medicare contracts but also ethically critical and simply good practice. Each insurance company outlines different components to treatment planning and guidelines they follow. For example, Medicare requires the therapy justification meet frequency, intensity, time, and type (FITT) standards. For the purposes of this section, let’s explore three components that might be considered in a treatment plan: clarify a treatment focus, set realistic expectations, and establish a standard for measuring treatment progress. Incorporated into this discussion will be an exploring of two benefits: providing a road map and formulation of interventions. Clarifying Treatment Focus Using the road trip example introduced above – traveling from Charleston to the Florida Keys – clearly there are multiple routes one can take. Driving routes vary from the scenic route to express toll roads to multiple options in between. There are benefits to adopting any one of these plans. When it comes to personal exploration, it is sometimes beneficial to spend an extended period of time in a place of contemplation. Although there is a systemic push to expedite the treatment process – moving rapidly from assessment to problem identification to treatment of human behavior – emotional processes do not always mirror the requirements of the managed care systems. At the same time, it is important to support a participant in their process with them feeling a sense of momentum and forward movement. Therefore, one of the purposes of the treatment plan is to clarify treatment focus. During this phase, it is important that both drivers or collaborators maintain an open line of communication, are aware of the route they are taking. Just as in a road trip scenario, one person is driving and the other the passenger, then at some point switch roles. A therapeutic setting is similar in that a professional is sometimes the driver and sometimes the passenger. As we will discuss in a below section (Collaborator Orientation), these roles oscillate throughout the intervention process. When monitoring health changes and effects of prescriptions (physical movement, breathing, etc.), the focus might be on basic activities of daily living (ADL) such as dressing, bathing, and eating. When including this assessment at regular intervals, it lends immediate face validity and can be corroborated with participant ratings on brief scales. It is of utmost importance that adjustments account for individual differences. When a treatment focus is incongruent with one’s place along a dementia health continuum, then the potential for harm increases. Harm might be in the form of retraumatizing, minimizing a loss, or otherwise undermining the intrinsic value in the person present today. Let’s turn to a vignette to make this point salient.

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At the age of 99, Grace raised an eyebrow as a caretaker ecstatically praised her for brushing and styling her own hair. Grace said, “I’m leaving my house, of course I’m styling my hair.” Grace spent 40 years as a financial consultant and engaged in socializing and entertaining at her home and in the community. How she presented herself in public is strongly connected with her identity, then and now.

Although using combing and styling one’s hair as a mark of independence later became quite applicable to Grace, it was not until extrapyramidal symptoms resulting from Haldol use, hand tremors, that it could be considered appropriate for a caretaker to praise the self-initiating use of a brush. For therapies focused strictly on behavior changes, diminished frequency and severity tend to be favored outcomes, rather than complete omission. We can take, for example, George’s changes in different living environments. George received a diagnosis of Frontotemporal Dementia (FTD) at the age of 63. He expressed frustration with his living situation, stating, “I was mowing my grass one day and the next I was just plucked from my life and dropped here.” This underlying current of loss impacted his day-to-day interactions. Twenty times a day George would voluminously and verbally express agitation and annoyance with everyday occurrences (e.g., people making noise in the halls, the TV remote not working, people knocking on his door, etc.).

With therapies focused purely on behavior modification, I often wonder for whom the is less frequency desired? Certainly, my hope is that this is not merely another form of objectification, where another’s happiness and ease with living is of greater importance than the person living with dementia. With treatment focus being solely on the person living with dementia, it should be obvious that the well-being of the person is the ultimate focus. Decreasing “verbal outbursts” from 20 to 10 might have an impact on people who are around George; however, where is this energy going for him? In what ways is the energy being transformed to support balance in his bodily system? The notion of setting realistic expectations in the therapy process is a necessary component. Realistic Expectations When setting out on a road trip, there are some defining features that dictate the course of travel. For example, time and money can be two factors. Given these two constraints, the driver and passenger will develop a plan that fits within these parameters. It is important to know these parameters at the onset of trip planning or therapeutic intake so as to set realistic expectations. It is important for all involved to have an understanding of the expectations. Further, this can support the professional in formulating the most appropriate intervention tools and strategies to employ. Making a decision on who will drive and who will be the passenger at the beginning of the road trip from Charleston (grief) to the Florida Keys (optimum well-being) parallels the therapeutic process of clearly delineating role expectations, goals, and possible outcomes (Maruish et al., 2016). Ensuring this conversation takes place in the initial assessment is important for setting the tone and minimizing the possibility of disappointment with the process. Moreover, open communication and

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collaboration are keys to a successful therapeutic relationship and are necessary elements in strengthening the therapeutic alliance. Sometimes the conversation turns to directives and constraints placed on a professional by third-party payers and yet, awareness of time is independent of who is paying for the provided services. In other words, a person who is receiving services, private pay should not differ in service delivery from a person who is receiving care that is reimbursed by a third-­ party payer. It is important that professionals maintain a sense of commitment to all participants’ well-being. This process of traversing from grief to optimal well-being can be broken down into segments, thereby allowing a participant to feel a sense of accomplishment and continued forward movement. When a participant feels a sense of stagnation, then the likelihood of them remaining committed to therapy at a high degree tends to diminish. Therefore, it is one of the responsibilities of both parties to engage with the chosen appropriate intervention techniques and meet the expected collaboratively agreed-upon goals. Measuring Treatment Progress A third purpose for developing a treatment plan is to establish a baseline. When working with a participant, it is important to understand their perspective. Comprehending their perceptions and worldviews can help guide the integration process. Clearly documenting and collecting data at a baseline is a necessary precursor and tool that is often utilized when a participant, or a professional for that matter, is feeling that little progress is being made. Having specific goals in mind that are collaboratively developed by both participants offers more than simply a contract between the two parties, and instead establishes a standard for measuring treatment progress. One of the benefits of treatment planning is the ability to draw on the most appropriate interventions and techniques to be utilized in designing an individualized plan of care. I have discussed three purposes of formalizing a treatment plan: to clarify a treatment focus, to set realistic expectations, and to establish a standard for measuring treatment progress. In discussing the advent of treatment planning incorporation, largely influenced by managed behavioral health care introduced in the 1970 and 1980s, I have also highlighted the benefits to both involved in the process: providing a road map and formulation of interventions. Independent of third-party payer expectations, it is important to regularly document each session as a necessary component of properly executing the treatment plan. Simply put, it is a good ethical clinical practice. Even when adopting a theoretical perspective that lends itself to free-association, a skilled professional will be able to gleam necessary information shared by a participant and document it in a coherent fashion reflected by the form of a treatment plan.

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Development Process Clinically and therapeutically, there are definitive components to developing a successful treatment plan. Two areas you may want to consider incorporating are a referral source and reason for the referral. Although this is covered under the “why now” seek support question, you may find it helpful to include this on your intake form. You will see in the Appendix of this chapter a QR code where you can gain access to the intake form I have developed. Formalized on this intake form is documentation of the referral source, which can offer insight to how the therapy process started. For the purposes of this section, let’s look at three recommendation areas: problem list, goals and objectives, and participant strengths. Problem List Similar to the importance of offering verbatim data on the presenting problem, I also recognize the significance of offering verbatim data when listing problems. For many reasons this is important, one of which is to add subjective value to the entire treatment planning process. For example, when a person is initially diagnosed with dementia, it is important that decisions regarding living arrangements are not made by excluding the person who has just received the diagnosis. It is important to offer time and create space for participants to validate any interpretation of what they are conveying or of problems that have been conveyed by a proxy. If and when a person who is diagnosed with dementia is provided space, time, and resources to confirm another’s understanding of their self-identified problems or even clarification of problems identified by their proxy, then sometimes it is revealed that the proxy holds different goals and objectives than does the person recently diagnosed. Another data point to consider including in the problem list are areas that have not otherwise been identified by either of the previous two mentioned parties – the person diagnosed or a proxy. In other words, when you learn evidence of other concerns, then these too should be documented. With the problem list compiled, the next step is to prioritize the problems, beginning with any problems that can be identified as having a high degree impact on a participant’s life. Further, it can be helpful to begin from the point of self-identified problems by breaking these down into manageable pieces. Increased manageability allows for the likelihood of a greater degree of success experienced by a participant early on in the therapeutic process. The last area to consider in the problem list section is to interact within a participant’s defined reality. I am suggesting here that the defining of reality originate with the person living with dementia symptoms. In other words, it is important to take into consideration any barriers or constraints or other contributing variables that have an impact on achievability. To do otherwise would be to guide a participant with unrealistic expectations – and possibly do harm to a participant. A supreme violation of the Hippocratic oath – do no harm. In the next section, we will explore two areas of goals and objectives that can be particularly helpful. To ground the next section on goals and objectives, we can focus on two ways treatment planning is important: language and prioritization.

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Goals and Objectives Linguistically, there are four influential components: achievable, realistic, measurable, and stated positively. Even when beginning from a capabilities approach, it is important to develop goals that are achievable within the parameters of one’s capabilities as well as time frame. For example, a participant who lives in a locked residential space would be encouraged to set goals that are achievable within her environment. Goals of independence can be established even when admittance to the world outside the lock corridors is prohibited. Establishing a realistic sense of independence by acknowledging a person feeling everything is out of their control and encouraging them to knock on another person’s door to invite them to group exercise class is a way of establishing independence. Holding space for this goal communicates a belief in the realistic nature of the stated goal. The measurability factor is high in this example because the goal follows the FITT principle. Framing goals using positive language or what we want to add is necessary for positive change. In this example, instead of saying stop engaging in repetitive behaviors such as pacing the halls or tapping, previously document as BPSD in this participant’s file, we (collaborators) framed the goal as: feel like I have a purpose by knocking on Eileen’s door and inviting her to exercise. Prioritization is an important component within the goals and objectives section. This process should mirror a participant’s problem prioritization. To assist in the overall process of goals and objectives, we might consider some questions: What area of your life would you like to be stronger? What’s a similar goal you’ve achieved success with? Is there anything you need to abstain from to achieve your goal? What barriers are between you and your goal? Do you know what you need to make your goal a reality? How will you be different after reaching your goal? What will be different when you reach your goal? How will your life be different if you never reach your goal? When we start working with a new participant, it is important to listen not only to their identified problems but also what they do not say. You then collaboratively identify a couple of goals to focus on. An enhancement to this process is as Jongsma and Peterson suggest, come up with objectives for each goal and demark a corresponding timeline for each objective (1999). Engaging in a transparent, co-­ participatory process strengthens the therapeutic alliance, offers greater validity for the approach, and allows a participant to feel a sense of performance mastery early on in the therapeutic experience. Such measures of success have a direct implication for shifting among other stages of change mentioned previously (Prochaska, 1995). In other words, creating coherence in goal setting and prioritization is a process that, when successful, can be applied to other areas of the personality. There is a degree of transferability in the learning that occurs.

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Participant Strengths A third area of developing a successful treatment plan is to clearly identify participant’s strengths. For those whose training is deeply rooted in a strengths-based therapeutic tradition, it will seem natural to document progress notes and develop treatment plans from the perspective of each individual strength listed. Here is another place where utilizing a participant’s strengths can reinforce the process of developing specific, measurable, attainable, realistic, and time-sensitive goals (SMART). We must also be comfortable with extracting from participant’s anecdotal or subjective data that we can use the SMART principle to convey structure. This harkens back to our earlier discussion on the importance of both subjective and objective data. We will return to this in the section below on SOAP notes. Following the initial intake and assessment session, spending time to develop a clearly delineated treatment plan can have far-reaching positive effects, extending well beyond the tedium of satisfying necessary paperwork or filing with insurance providers. I have always seen this step in the therapeutic process is simply a matter of good ethical practice. Therefore, regardless of the requirement of any third party, it just seems natural, as a practitioner, to properly document and maintain current progress notes (or SOAP notes) on each participant. I have explored three recommended areas for creating successful treatment plans with people diagnosed with dementia: problem list, goals and objectives, and patient strengths. I detailed areas to consider in the problem list section of planning, as well as two areas to support the formation of goals and objectives (language and prioritization). We saw the appearance and reappearance of prioritization in each section  – a key concept to successfully supporting the optimum well-being of participants.

Case Conceptualization Case conceptualization might best be viewed as a living document. In Chaps. 7, 8, and 9, we will learn specifics on three separate case composites. In the Appendix of each chapter, you can see an example of a case conceptualization generated for each case. In general, case conceptualization is an iterative process that is informed by careful observation, continuous dialogue, and reformulated to meet the demands of new discoveries made throughout the collaborative therapeutic process. With DGT, I utilize a six-step process in case formulation (Maruish, 2014; Campbell & Rohrbaugh, 2006; Borrell-Carrió et al., 2004; Engel, 1977). The areas I consider are as follows: • • • • • •

Develop a comprehensive problem list Determine the nature of each problem Identify patterns among the problems Develop a working hypothesis to explain the problems Validate and refine the hypothesis Test and revise the hypothesis during treatment

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We will incorporate into this discussion Persons’ suggestions of three assistive areas: treatment modality, intervention strategy, and intervention point (1989). It is important to keep in mind that we are investigating four overlapping layers: aging, trauma and grief, death, and dementia. These layers will help focus the application of the finer theoretical formulations of DGT. Of utmost importance is to consider case formulation from three complimentary perspectives: biological, social, and psychological. In other words, the biopsychosocial case formulation (Cambell & Rohrbaugh, 2006). When taken into consideration simultaneously, then we can begin to formulate a whole and clearer representation of a participant. The picture of a person becomes less fragmented when taking into consideration social, cultural, and stress contexts of dementia manifestation. Put differently, as we discussed in the section on attachment dimensions above, a model informed by a general systems theory is also applicable in the case formulation process (Laszlo, 1972; von Bertalanffy, 1952). As we navigate the particulars of the case formulation process, we will see where a biopsychosocial perspective considers factors such as: predisposing, precipitating, perpetuating, and protective (Cambell & Rohrbaugh, 2006). Each of these four factors can be utilized to frame the finer points of each step.

Comprehensive List of Problems This discussion begins from the point of assuming a person is coming for support after having been diagnosed with dementia. Within a problem-based context, the most obvious presenting medicalized problem is dementia. However, it is important to not stop at this point of diagnosis and rather collect comprehensive data on multiple systems. In other words, understanding a person’s body by taking into consideration information obtained from measuring multiple dimensions of a single individual. For example, some areas to consider are sleep patterns, hydration, typical nutritional intake, any medication consumption (current and past), history of grief episodes, history of physical ailments, previous and current attachment styles, and role of physical exertion throughout entirety of life. Listening to the precise language participants use and including their language in this section offers direction in the therapy process (Persons, 1989). Further, as we will see below, content analysis can be used to identify patterns in problems. Having a view of a participant’s world from their lived experience and in their own words is valuable. This is a way to maintain personhood and autonomy. Areas that might be considered in this section are identifying any areas of stress generalized level of distress, overall well-­ being, supportive and interfering symptoms of dementia, risk of harm to self or others, physical health, family and other interpersonal relationships, degree of functioning in different environments, and motivation and readiness for change.

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Nature of Problem This step is a process of determining the nature of each problem by considering origins, precipitants, and consequences (Eells & Lombart, 2011). The information gleaned from each area is of equal importance. I find the questions posed are particularly useful to keep in my therapeutic toolbox. For example, exploring times when a person is present, communicative, and interactive is worth further investigation. What this suggests is that there are times when dementia is latent. In situations where people are labeled as never present, then understanding what exacerbates dementia symptoms is important.

Identify Problem Patterns A variety of data analysis techniques can be employed in the process of identification of problem patterns. You might opt for temporal analysis that focuses on identifying relationships between behaviors and time points (Lee et  al., 2018; Biagi et al., 2017) or theoretical analysis that relies on theoretical frameworks or domains to move from theory of behavior to implementation of interventions in practice (Murphy et al., 2014; Cane et al., 2012; Grol et al., 2007). A third way to analyze narrative data is through content analysis (Taylor et al., 2023). Whichever method is chosen, the collection of data at this point serves the purpose of understanding any underlying themes or commonalities present in the identified problem areas. We can use the vignette of Keisha and apply a content analysis technique to understand one of the above three offered data analysis techniques. Keisha was recently diagnosed with major neurocognitive disease and moved, by her 3 sons, from her home of 45 years into memory care, located 25 miles from her home. This move occurred one-week after her husband died. She is described by her primary care physician as presenting extreme agitation, anxiety, and repetitive behaviors (tapping her leg and pacing the halls). She is prescribed medications: Gabapentin, Acetylcholinesterase inhibitors and memantine.

Although data on clinical use of these pharmacological approaches continues to be varied, the side effects are well documented by the Mayo Foundation for Medical Education and Research (MFMER). A few side effects are diarrhea, nausea, vomiting, bradycardia, and syncope. What if an alternative route of care were offered? It might look something like: sons contact a residential space; a meeting with Keisha is set and during this time Keisha is asked: “Tell me how you are doing? Do you know what you need right at this moment? You can use any form of communication – paper, pens, pencils, blocks, manikins. Create your world for me. You mentioned wishing your husband were here and that all this would be so much easier had he not left you. Should we be talking about the loss you are feeling for your husband?” Once listening to Keisha, content analysis can be used to identify common themes in her narrative.

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Develop Working Hypothesis Once the previous three steps (develop a comprehensive problem list, determine the nature of each problem, and identify patterns among the problems) have been conducted, articulated, and documented, then it is important to collaboratively develop multiple hypotheses. The reason for offering multiple hypotheses from which to proceed is to be able to adopt a treatment plan that fits within a parsimonious explanation of the problem list. Three areas that surface in Keisha’s session are as follows: feeling a loss of purpose, grieving her husband’s unexpected death, and worrying about her son’s health. Loss is a common thread weaving together her presenting concerns. Conducting a strengths inventory on how she has handled previous losses can begin to build an emotional foundation of security upon which she can stand.

Validate and Refine Hypotheses Having more hypotheses to work with offers a richer set of potential explanations of a person within their environment. In other words, by contextualizing a participant’s feelings, behaviors, and resulting problems, the hypothesis refinement and validation process can be pared down into a more precise and simplistic set of explanations. On the other hand, beginning with a narrower explanation of presenting concerns and then taking a wider view by using multiple hypotheses seems to begin with diminished richness of validating, compared with refining a broader set of hypotheses. The selection of a treatment modality presupposes an understanding of the origins of Keisha’s losses and current behaviors. Or, if we are able to uncover the origins of her strengths in times of previous losses, then we can begin to apply similar processes to the present losses and behaviors.

Test and Revise Hypotheses The sixth step in case formulation is to test and revise the hypotheses during treatment. Discuss and then arrive at a single coherent hypothesis that most appropriately fits the participant’s current stated needs. The entirety of case formulation is a process of formulation, monitoring, and evaluating that is continually revised based on newly informed perspectives. In other words, a perspective that a participant initially shares about, for example, attachment styles with different relationships during the intake and assessment session may then change based on introspective work done during DGT, which shifts their perspective or constructs an alternative narrative. This newly informed narrative is equally important and is as valid as the originally offered perspective. In choosing the intervention point of loss, the idea is

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that by integrating the fragments of loss, then Keisha will be able to thrive with dementia symptoms. The importance and success of case formulation, as well as participant health and well-being ultimately, hinges on a clearly delineated, sequential, and iterative process of hypothesis generation, refinement, and validation. I discussed a combination of multiple methods of case formulation that you can utilize in your delivery of DGT. Incorporated into the six steps of case formulation was a brief introduction of three assistive areas: treatment modality, intervention strategy, and intervention point. It is my hope that it is clear why adopting a clear path for case formulation is helpful and necessary. Our discussion of DGT will now turn to five distinct clinical features that differentiate DGT from other treatment modalities: collaborators’ orientation, session location, physical activity, nature, and grounding work.

Process of Change The DGT approach  – with two main pillars: holding each person as an end and respect for pluralism – lends support for the freedom of participants to contribute to society by creating the kind of life they are effectively capable of leading. A general model of change, based on DGT components, is depicted in Fig. 6.1. The foundation of the model is built upon a recognition of human dignity. As can be seen in the figure, regardless of diagnostic labels, respect is extended to each participant and the person is viewed as valuable in and of themselves as an end, rather than as a means to an end. Beyond this initial starting point, the elements of respect and appreciation are customized to each participant based on their capabilities. Once this important factor is met, then the agency and identity of each participant can emerge and be shaped and strengthened through the process of change. Simply put, the developing of the concept of the self. This shaping of agency and identity in turn informs a participant’s respect and appreciation for themselves – the whole self. The whole self includes the other self (the dementia self) merging and forming a secure attachment with the present self. Ideally, this leads to a participant leading a meaningful life and contributing to society. A meaningful life can be measured by interpersonal shifts or strengthening of relationships. Contributions to society can be categorized as two influences: shaping of government policies by sitting on political committees or social change at the local level by developing policies that reflect the lived experience of the person with dementia symptoms (recall Fred’s experience discussed in Chap. 2 in the section on Dimensions of Social Justice Model in Dementia Health). Contributions should not be placed within a system of hierarchical significance. Each person holds different capabilities – one contribution is not less valuable than another. While Fred’s experience exemplifies policy change at the residential level, we can turn to a vignette of the exchange between Gerald and Josephine

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Gerald has been living with a diagnosis of probable dementia for four years. He receives the local newspaper daily and looks forward to the day’s word jumble. He sets a timer and begins writing his answers on a sheet of paper, leaving the original printed puzzle in the newspaper blank. He then gives the newspaper to Josephine, a friend who lives several doors down from him. She then repeats the same process he did and at lunch the two compare answers. Completing a high number of correct words is only one part of the exchange. Then comes the pinnacle moment they each anticipate – who completed it in the shortest amount of time?

Gerald and Josephine’s exchange exemplifies one way Gerald is contributing to his own and other’s well-being by being connected, sharing common interests, and engaging in friendly competition. In other words, we could say his life is one of flourishing. The capabilities approach, out of which the DGT approach is developed, is not a precise theory of well-being and, as such, DGT should be considered a flexible and multisensory intervention (Nussbaum & Levmore, 2017; Sen, 1992, 2009; Robeyns, 2005, 2016; Qizilbash, 2008). The capabilities approach, as has been mentioned several times previously throughout this book, embodies the belief that the worth of each person is both communally and individually recognized. In this section, through the introduction of the key principles of DGT, we will explore the importance of meeting a therapeutic standard of ensuring human dignity. As has appears throughout this book, case composites will continue to be used to illustrate the central tenets of DGT, how to use DGT to understand participants’ perspectives on dementia and BPSD, and how to conduct therapy sessions.

Dignity The underlying concept behind DGT is that our dignity plays a fundamental role in determining our emotions, which then becomes the impetus for our behaviors and thoughts. We explored in Chap. 4, when dementia is thought of as a societal burden, there is a direct impact on the internalization of a diagnosis and outward stigmatization. We can see examples of this in studies on the correlations between negative aging and dementia stereotypes and cognitive performance (Mazerolle et al., 2017; Haslam et al., 2012; Levy, 1996). The language we use influences the narratives we tell. These narratives impact individuals’ lived experience and self-expectations. For example, a person diagnosed with dementia, who lives in an LTCC, can become a pawn moved from one activity of daily living (ADL) to the next. Even under the greatest of circumstances, with the best of intentions, and in the most luxurious and eloquent living environments, the emphasis frequently is on residential operations (needing to meet strict state licensing requirements) preparing a meal, clearing the table after the meal, and doing dishes – often absent the participation and involvement of the person living with dementia. Rather than participants’ adopting an active role in their own living or care, they are the recipients of care designed to fulfill state requirements. A lack of developing a coherent and systematic

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therapeutic approach has been reported to be the result of a lack of understanding needs of people living with dementia symptoms (Smith et al., 2013). This is where flexibility, cultural competence, and creativity are necessary. In order for these to occur, a person must arrive settled. In other words, prior to engaging in need identification as a collaborator, joining a participant on their journey, you must settle your own body. Some example of ways people arrive settled is by regularly reading for pleasure or listening to music, while others arrive settled by engaging in daily physical activity or commitment to a breath awareness practice. By its very definition, the goal of DGT is to operate from a place of human dignity. This central tenet recognizes the quality of human dignity prior to acknowledging and respecting interindividual differences. While shifting the Western perception of aging or a diagnosis of dementia – from a death sentence to dignity – is a large and lofty goal often thought of as a mirage – an initial stepping stone may be to begin with strengthening a participant’s interpretation of their own worth and dignity. In so doing, the creation of a path leading toward a socially recognized form of dignity may emerge. The DGT approach allows two collaborators to walk next to each other along this path. At the inception of the therapeutic relationship, a participant is viewed as having dignity. Although a participant may not be able to change their environment, operating from a point of dignity will determine how they perceive and interpret their environment. A major assumption is that older adults experience a much higher prevalence of chronic medical concerns, cognitive deficits, and neurological disorders when compared to their younger counterparts. When treatment is provided, the emphasis is on these assumed or real concerns, with a predominate focus on the physical dimension of well-being. Rather than holding the dignity of the person at the core of care, dementia health practitioners and health-care professionals will sometimes scan speech patterns for hope of detecting any early warning signs of dementia symptoms, discrepancies of daily happenings, or proprioception imbalances. Behavior and interactions run the risk of being suspect. Indeed, an approach that addresses and promotes the major tenants of integrative health care is needed now more than ever, insofar as the care is conducted within an environment of collaboration rather than pure assessment. Simply put, it is a fundamental human emotion to want to feel heard and seen – a sense of belonging, secure, and valued. These emotional needs do not change as we age. Nor are they absent when we are diagnosed with dementia. It is worth noting that attachment dimensions, trauma histories, unmetabolized griefs, aging, and death necessitate a multidimensional-sensitivity to therapeutic processes. Treatment models need to mirror these processes by being integrative. If we begin from the point of view that worth and dignity are extended to us from our time of birth, then we can see where the conditions of aging, cognitive shifts, or a diagnosis of dementia do not factor into the equation of rights extended to individuals. As we discussed earlier, Kitwood argues for the right of people living with dementia symptoms on the ground of being relational beings with historical narratives (1993). DGT practice principles are intended to support people in thriving across the lifespan through an adoption of a collaborator orientation.

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Individualized Considerations The orientation of DGT is novel in its combination of therapy factors. In other words, the sum of DGT is more valuable than its standalone parts in collaborating on the process of change. We will discuss the implementation of each component by highlighting how unique and novel components combine with common variables (McAleavey & Castonguay, 2015). At its most basic level, previous studies on the benefits of engaging in psychotherapy for older adults suggest the process is life-­ enhancing at a time when a person may be wrestling with multiple changes, gains, and losses. Specifically, it is important to know the individualized needs of each participant so that DGT can be custom fit, tailored, and sensitive to trauma histories, aging, and dementia (Atiq & Gillig, 2006). It is important to adopt a therapeutic approach that reflects the human lifespan, which is flexible and malleable. At the forefront of the DGT approach is the development of the therapeutic relationship, collaborative in nature, and guided by the strengths-perspective. A strengths-perspective is one that recognizes capacities, talents, competencies, possibilities, visions, values, and hopes of each participant, independent and separate from age, trauma, or dementia (Saleebey, 1996). Acknowledging and emphasizing what people know and what they can do is a way to put the strengths-perspective into action. The act of acknowledging can also be seen as a process of generating resources available and accessible to the participant. Within the context of some forms of therapies, agency and identity are informed initially from the perspective of a diagnosis – in this case: dementia. Some researchers have promulgated the belief that depression prevalence is higher among older adults. It has long been assumed that older adults who are affected by depression respond differently to treatments. There have been contestations on whether or not older adults are symptomatically different than their younger counterparts. In fact, there is not higher prevalence of depression among our older community members (Haigh et al., 2017). Another area that has interested some researchers is this question of whether depression symptoms are different as we age. However, the prevalence of depression and anxiety are higher among people who are affected by dementia when compared to other older adults (Kwak et  al., 2017; Bennett & Thomas, 2014; Muliyala &Varghese, 2010; Seignourel et al., 2008). Depression and anxiety are not natural concomitants of a dementia diagnosis. With the linchpin of DGT being human dignity, factors of old age and dementia play a secondary role. In other words, these are predisposing and precipitating factors, respectively. When adopting DGT as a therapy model, a respect for multiple perspectives is key. DGT could be understood in contrast to a Kantian view of justice, wherein it is argued that agency and identity hinge on rationality – which under this view is assumed to not extend to people diagnosed with dementia, or even aging for that matter – DGT honors the person and contends that by virtue of birth they are the drivers of agency. In Chap. 2, we discussed the social justice relevance of considering identity and agency. Here we will discuss it in the context of implementing DGT. Agency is by

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no means a fixed entity, rather it is ever-changing in relation to societal structures – offering freedoms, opportunities, losses, and constraints (Giddens, 1984). It should be noted that I am not suggesting a binary of agency development – free or imprisoned – rather a movement along a continuum. This continuum is informed by social structures and social interactions that equate to people feeling more or less free. As previously explained, individual agency may be the stepping stone on a path toward shifting social structures and a recognition of agency. Nonetheless, if change is to occur, beginning from the point of view of agency being extended to all sentient beings is a necessary first step. It is also worth noting that DGT differs from Rawls in his view of justice insofar as he deems anyone unable to honor contractual agreements to not be considered people (2005). In other words, he would exclude some older adults and all people living with dementia symptoms from being considered people and thus exempts from inclusion in dignity. Having explored agency and identity within the context of a process of change in psychotherapy, let’s expand the conversation to include BPSD. As has been mentioned previously, BPSD are often considered highly problematic, when in fact it could be argued that this is a form of participants’ exercising agency. Further, as previously highlighted, BPSD may be the confluence of physical or mental discomfort and our inability to understand what is being communicated, inadequate stimulation, or needs for social contact (Cohen-Mansfield et al., 2015). As with cognitive behavioral therapy (CBT), one form of talk therapy, DGT too incorporates talking. This term is used loosely as it may not always be verbal talking – it may be talking or communicating in the form of a hand massage, one-to-one eye gazing, or drawing. Nonetheless, when appropriate talking is used and, later in this chapter, we will discuss ways in which the talk therapy portion of this approach is augmented by the incorporation of other components. As we discussed in Chap. 4, CBT has been critiqued in the literature as being a challenging method for use with people affected by dementia because of its reliance on talking – an area suggested to be challenging for people affected by dementia. Research suggests the language centers of our brain are most significantly impacted when we are affected by Alzheimer’s. Nonetheless, there are other nuances in communication, other than verbal, that transfer meaning. For example, BPSD is a collection of means for communications. As previously noted, BPSD can also be understood within the context of agency and identity. If a person diagnosed with severe dementia, who spends a considerable part of their day in a wheel chair, is invited to leave their room and attend an eating experience in the dining room, they may respond by gripping the arms of their chair. Or, when a person is moved while seated in a chair by another person, the person being moved may opt for dragging their feet. Both mentioned that physical maneuvers are not only forms of communication, indicating a disinterest in participation in the dining activity; the physical acts also simultaneously express interest in participating – by not participating. The person is exercising their agency and delineating their identity. With varying modes of communication, holding empathy, a cornerstone of person-centered therapies is vital. For participants to be most successful in strengthening their agency and identity, it is necessary to validate participants’ experiences and ask questions in a

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curious and respectful manner. Acknowledge the actions of the person, rather than seek ways to manage the person. A dementia diagnosis offers a person a range of possibilities, many unknowns, and potentially some degree of awareness or consciousness raising. If a person is to navigate these uncharted waters in a way that bends toward an increase in their identity and agency, then having a sense of autonomous choice is absolutely vital. We could think of the decision-making process as being comprised of pros and cons, named “decisional balance” (Janis & Mann, 1977). It is important to note this has become the core of the Transtheoretical Model (TTM). When operating from this perspective, it is assumed that participants move along a continuum from preparation to action, wherein their self-efficacy (SE) shifts in accordance with their weighting of pros and cons. One measure of change in DGT is tracking SE across time points (Bandura, 1977, 1986, 1997). Emphasis here is on behavior change and although there is a nod to paying attention to one’s feelings, this is often regarded as secondary to emotions and perceptions. Individual behavior is shaped by our worldview of ourselves in relation to others (Jones & Kilpatrick, 1996). For this reason, you will see present within the DGT approach, a gentle guiding of next steps within the context of areas brought forward by a participant. It may seem counter to incorporate a process of rank ordering pros and cons within a present moment-oriented approach, which by its very nature suggests an absence of valuing choices and a repelling of binaries. And yet, this ranking is a step in the process of recognizing the benefit of adopting a nonjudgmental, present moment awareness perspective. It is not feasible to demand a participant to immediately accept the benefits of what may be a foreign approach. Rather, it is through a participant’s own ranking of these pros and cons, and holding a curious mind that they will experience benefits, such as reduced internal stress, increased sense of agency, and ease with outward environmental stimuli.

Dimensions of Well-being The notion of well-being has a history of being measured and documented. We can stretch back in US history to 1929 when the President Hoover organized a task force to investigate and collect data on our citizens’ perspectives of their lives. The exploration of gauging the quality of American life continued into the Johnson era, when, at the request of then President Johnson, social scientists put forth a report on the barometer of areas of well-being. As it relates to this book, two areas are of interest: (1) health and illness and (2) participation and alienation. Even though the report was concerned with how to accurately measure and communicate the social progress of the United States, these efforts have led to where we are today with the development of self-reported scales and measures of well-being (Cohen, 1969). As we will see in the SOAP Notes section below, subjective data is equally valuable and just as important as objective data.

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Although DGT relies on dimensions of well-being as measures of change, you can also see where elements of Nussbaum’s theory of justice are woven into the practices of strengthening and supporting human flourishing. The process of shifting from individual disregard to valuable member of society must include opportunities where people can gain support with the developing: life; bodily health; bodily integrity; senses, imagination, and thought; emotions; practical reason; affiliation; other species; play; and control over one’s environment (Nussbaum, 2007). For each participant to thrive, it is necessary for a practitioner to turn attention toward these areas and ensure that each participant is meeting their own delineated standards of their own capabilities and optimal well-being. In a previous chapter, we met Lola who many of the nursing staff employed where she lives, have labeled her “noncompliant.” In our interactions over the previous 2 months, within the context of a thrice-weekly mind–body awareness group, I hold a completely different view. I view Lola as a woman who is intelligent, holds a sense of humor, is musically talented, compassionate, and physically active. She presents with a delay or absence of audible speech. Nonetheless, she is fully cognizant of her environments, people operating within them and her own as well as others’ emotional states. Among the medical team what they label as apathy, agitation, and anxiety, I see as a person struggling to survive in a severely diminished non-­ stimulating environment (environmental coma), attempting to communicate in a way that gets people’s attention (e.g., chair tapping, clapping, and pacing). I also see a person who is frustrated with not being heard and living in a residential dystopia. Lola is interacting with her environment and exerting her agency. Lola uses physical comedy and makes intentionally humorous facial expressions in response to my humorous speech. I see the benefits of adopting an existentialist approach to what might otherwise be labeled meaninglessness. Allowing space for these forms of agency to unfold is empowering and for Lola self-authenticating. This exemplifies how the effects of diminished personhood and lack of communication are interpreted as disruptive and noncompliant as opposed to acts of agency and self-determination.

Session Specifics DGT maintains an absolute respect and admiration for individual choices (Nussbaum, 2011). Human freedom flourishes when thriving is predicated on capabilities rather than functioning. The capabilities approach “recognize[s] the equal human rights of people with cognitive disabilities” simply because they are born human (Nussbaum, 2011). When people are excluded from humanity, and not provided equal justice, then we are defining a person by old age or dementia rather than by birth. We commit injustices when we devalue people because of age or dementia symptoms. There is immense diversity within the constructs of age, trauma, and dementia (Gopinath, 2018). Maintaining respect for diversity of experiences with age, dementia, and trauma are necessary for DGT to be most effective (Fig. 6.5).

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Fig. 6.5  Map of session format

Collaborator Orientation I am particularly fond of the terminology of “fellow traveler.” Some of the therapeutic approaches we explored in the previous chapter have emphasized an us–them model with reference to a client or patient. I struggle with this terminology, and have since the outset of my career, as it emphasizes a hierarchical approach where “I” practitioner, know more than “you” client. Or, worse yet, I know best what you need. My background as a student researcher in labs at a time when terminology was shifting from subject to participant, combined with my experience in the sports and athletic training arena inform my inclination to refer to people with whom I currently work as participants or collaborators. Two main reasons for this lexiconic choice are emphasis on partnership and agency. Partnership and Agency In line with existential therapy’s emphasis on the shared human condition, with no one being immune to suffering, inviting the framing of a partnership or collaboration sets the stage for increased awareness as well as personal freedom and choice. Living and dying are two acts that both participants share, thereby dissolving the us–them divide and also potentially a way to connect each to the other. Each comes to the metaphorical table with their inherent strengths and varying degrees of ultimate concerns and work together to metabolize loss episodes and integrate this grief into a coherent life narrative. One way for magnifying the importance of this partnership in creating internal secure attachments is with physical orientation. Rather

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than being seated across from one another, all talking and communicating happens side by side while simultaneously engaged in a participant selected activity. Fellow traveler, or participant, suggests simultaneously a sense of agency or freedom in choices as well as recognition of limits. If we use a geographical landscape as a model for cognitive and emotional mapping, we can easily see where a traveler is free to explore all areas within a given landmass and at the same time, restricted by the boundaries of the landform. Similarly, a person in therapy holds the freedom to explore and is limited by their decisions, denials, or displacements. It is an appropriate use of time to investigate spaces of resistance or the space that exists between decisions. Sometimes what exists in the spaces between, ends up being more valuable than what is initially described as the focus. The initiation of this relationship is also coupled with equal attention to a person-­ centered approach, where there is a recognition of histories and strengths as well as present preferences and psychosocial needs (Chung et  al., 2017). By adopting a nonjudgmental approach in person-centered care, a therapist can quite effectively support participants with the development of their own agency and identity. When we begin our journey together, I see it as incredibly powerful and empowering for people to recognize their role in our journey. I share with them that we each have strengths that are going to contribute to the process – with neither of us being better than the other. Framing our work in this way sets the stage for people to begin operating from a strengths-based perspective. The strength of this orientation is reinforced by one-on-one sessions with a trained therapist. The frequency of sessions is determined by the participant. Historically, participants have opted for a range of session frequency from every other day, Monday through Friday, to once a month. To date, with limited data collection, there does not seem to be a correlation between session frequency and impact of strengthening participant recognition and appreciation for dignity. Instead, variation seems to be dependent upon previous life experiences of the individual and the degree to which dignity recognition had previously been undermined.

Meeting Location When selecting a meeting location, it is necessary to present a variety of options from which participants can choose. In creating a list of local places, “awe” is an important element to consider. Put differently, borrowing from Maslow’s writings on peak-experiences and the element of awe, he suggests that the benefits extended to people who experience awe are a “disorientation in space and time, ego transcendence and self-forgetfulness; a perception that the world is good, beautiful and desirable” (Maslow, 1959). Although encouraging the incorporation of a focus on an outward experience might on the surface seem counter to the interpersonal processes of exploring concerns from loss to love and everything in between, it has

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been suggested through empirical and anecdotal data collection that the inverse actually occurs. There are some typical feeling states that result from peak experiences such as wonder, awe, reverence, humility, and surrender (Maslow, 1964, 1970). These feelings then hold the potential to activate a process of self-transcendence, coupled with valuable applications to the grief process and integrating losses. Incorporation of an element of awe lends gently and greatly to the process of self-transcendence and internal shifts (Stellar et al., 2017). By encouraging an outward focus instead of an inward focused problem solving, a participant will experience a greater shift in perspectives with a wider range of generating possible solutions (Trope & Liberman, 2010). Cultivating the physical environment or the meeting location in such a way that permits peak experiences to unfold is a necessary component in DGT delivery. Therefore, the importance of meeting location is not only to ensure a meeting location that feels safe and secure to each participant, it must also contain elements where elements of awe can be experienced. To facilitate encounters with awe-­ generating moments, DGT has two necessary components: perceived vastness and threat (Keltner & Heidt, 2003). Some examples of meeting locations are a practitioner’s office, a local park, a participant’s house, the beach, a mountain trail, or wooded area. In instances where a participant selects a meeting location in an environment other than outdoors, it is your responsibility to create a sense of awe by incorporating images of nature. This can be done digitally, orientating toward the outdoors, or by placing preprinted images of nature in a location that can be seen by participants. Ways and reasons for including the presence of nature in sessions will be discussed further in a below section. For now, let’s understand why DGT includes a component of awe by discussing perceived vastness and threat using a vignette. Stanford, age 91, selects meeting at his home and sorting and filing papers that are his own as well as his parents. His comment, “There is just so much history here,” speaks to the awe element of perceived vastness. One way of including threat to the session is to open a window. By suggesting the opening of a window, this will introduce just enough fragility to the environment.

In the above vignette we see the presence of both components necessary for an awe generating moment. The enormity of the experience of learning histories of his parents as well as the presence of controlled threat allows Standford to feel awe. Feeling awe can be the catalyst for increasing curiosity and motivation to change (Izard, 1977). Change resulting in people flourishing and living meaningful lives is the pinnacle of DGT (refer back to Fig. 6.1). The places where you can meet participants are shaped by your creativity and level of comfort. It is important to highlight the necessity to always operate within your scope of practice and level of comfort. In other words, we are about to embark on an exploration of a few examples of places where I meet participants. Simply because I feel comfortable meeting people in these locations within stated circumstances, by no means suggests you too must feel comfortable. First, before we discuss examples of meeting locations, we need to address ethical considerations of meeting locations.

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Ethical Considerations of Meeting Locations Ethical considerations extend to multiple areas of DGT. One reason for including a discussion in this section is to consider the ethical dilemmas that might arise in specificities of meeting locations. DGT invites collaborators to meet in places selected by the person living with dementia symptoms. For the purposes of this section, we will consider the context of four different places where you might consider engaging in DGT services: clinics and hospitals, office, participant residence, and public parks. Incorporated into this discussion of this component of the DGT model is a brief mention of fundamental differences between a professional relationship and a friendship. I bring this up because the blurring of the line between the two has a greater chance of surfacing when meeting locations are outside of a traditional office setting. Coming from a traditional clinical psychology background, when I initially began offering services I shared with people, “We are in a small town and we may see each other when we are in town. I respect your privacy. Therefore, I will not acknowledge you and yet I am more than happy to talk with you if you approach me. This allows you an opportunity to initiate conversation.” I have shifted my perspective and have adopted more of a community approach. You know your profession, community, and self, better than anyone. Listen to what feels ethically appropriate and legally grounded. You can always turn to your profession’s code of ethics for extra guidance and support. Let’s now explore a bit about possible participant selection of four different meeting locations: clinics and hospitals, office, participants’ residence, and public parks. Clinics and Hospitals One example of meeting location is a local not-for-profit health-care organization, that recently established a public clinic on the first floor of a retirement community. Five days a week, this particular retirement community contracts services with me to provide group exercise opportunities in the room immediately across the hall from the clinic. Some participants in group classes also see the two providers in the clinic. I have developed a working relationship with the two providers who have referred participants and their families to me for dementia health services. Sometimes, if I am early to class and a person is going in for an appointment and has a bit of a wait time and will miss class due to their appointment, I will join them in the clinic waiting room or they will join me in the classroom and we will engage in a brief free one-on-one seated exercise routine. Additionally, there are times when people who see me for dementia health services are being seen at the clinic, and who do not live within the retirement community, and based on previous discussion, know they are always welcome to join in the class exercises. Lastly, there are times when people have appointments at the clinic and due to their schedule or transportation reasons, I connect with them inside the clinic. I have always maintained a strong commitment to flexibility of schedule and meeting people where they are. Inherent in this self-selection process of meeting location is an opportunity to begin from a place of safety and security.

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Sometimes people are temporarily admitted to hospitals. I share with participants and any other relevant third parties (e.g., Power of Attorney (POA), spouses or partners, children, and nieces or nephews) that I am more than happy, in the event of hospitalization, to cease sessions until the participant is released from the hospital. If they prefer, I will gladly meet with people in their assigned room or if permitted elsewhere in the hospital (e.g., garden and gym). I share with them that I have working relationships with many people throughout our hospital systems and can provide additional resources as a professional member of a multidisciplinary care team. Office I am community focused and utilize public spaces to meet new participants. For example, my “office” might be a picnic bench in a local public park one day, a piece of driftwood at a beach later in the day, or a giant rock on a wooded trail the next day. When a specific park is a desired meeting location, it is because it has been selected by a participant. It is important to allow space for self-selection in order to maintain a sense of safety and security. Offering the opportunity to self-select the meeting location creates a sense of neutrality, thereby diminishing any sense of hierarchical power relations. Residence When appropriate, people select their home as the initial meeting place. When illness, inclement weather, participant preference or transportation concerns arise, participants opt for meeting at their residence. The familiarity of their home offers them a greater sense of control, at a time when many new ideas are being explored in much may feel out of control. Anytime I enter a person’s home I follow several guiding practices: remove shoes, do not inquire on photos that are displayed, refrain from using the bathroom, and abstain from activities that I would not otherwise permit myself to do in another professional environment. Essentially, I treat a person’s home no different than an office setting. Or, put differently, I heed Adams maxim: “Into whatever houses I enter, I will go into them for the benefit of” the person whom I serve (2005). As the authors mention, “Guided by principles of respect and professional responsibility,” it is important that I do not cross any boundaries and always lean toward the best interests of participants (p. 177). One of the great benefits of working with people in their home is what experiential theorist call “here and now compared to the enterprise of there and then counseling discussions of a retrospective nature” (emphasis added, Yalom, 2005). There is a different lens applied to sessions that happen in real time.

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Public Parks A fourth place you may meet participants is in public parks selected by them. We have already explored briefly the purpose and power of participant selected meeting places. Public parks offer a necessary pillar in the DGT approach: exposure to nature. There is substantial research lending credibility to the benefits of immersion or exposure to nature. These effects are then magnified when placed within the context of a therapeutic relationship. We will discuss these at greater lengths when we discuss a separate component of the DGT model: nature. As you can see, the above four mentioned places lend themselves to potentially blurring the line between work and personal space. It could be a regular occurrence when you see two people walking together in a public park. However, with engagement in a therapeutic practice it is vital to establish clear boundaries. Doing so will ensure behaviors are not interpreted as a friendship; rather it should be clear to onlookers that you are engaged in a professional practice. One way of doing this is to avoid conversations with others. At the same time, with the process of change occurring in real-life setting, it might be appropriate for a collaborator who is trying on new ways of being to practice initiating a conversation or interactions with others. Let us now turn to discuss fundamental differences between a professional relationship and a friendship. One main difference between friendships and DGT sessions is the latter are time bound, where are the former are open ended. Additionally, in friendships, self-­ disclosure is two ways, whereas in DGT sessions, self-disclosure is predominately one way (Gripton & Valentich, 2004). Due to some of the unique needs of people living with dementia symptoms, the potential for lines between professional and friend could seem even more blurred. However, it is important to be diligent in your approach and also adhere to the idea of, when in doubt, acting as a human. I learned a very valuable lesson about acting as a human. My early training emphasized a separation between therapist and client. I maintained this as I developed a working model of DGT, until the day when working with Adie, a woman aged 100, talked for the first time about abuse experienced as a 10-year-old child. In sobbing out her grief, she said, “I know my mom tried to stop it.” At the end of the session I asked, “Do you want a hug?” Adie opened her eyes wider and said, “Of course. I never thought you’d ask.” I carry this lesson with me and I ask more often now. With the ultimate goal of DGT being for people living with dementia symptoms to thrive and flourish, it is necessary to balance professionalism with warmth, care, and kindness (Rogers, 1957). It is important to consider the living situation of the person with whom you are working. Considering opportunities people have for human interaction and touch is important. Some ways to contemplate the needs of participants is to explore: Does the person live alone? Is their interaction with you their first interaction with another human since your last session? When you recognize minimal human interactions and contact, consider how this might frame your session and the work you two do. Keeping these human contact needs and interactions in mind can help frame the session so that you may also stay focused and work within the permitted time. We have discussed physical location where you might

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conduct DGT and the fundamental differences between friendships and professional relationships. Now let’s explore the significance of physical activity.

Physical Activity or Bodily Movement There is a tremendous body of research on the overlapping physical and psychological effects of engaging in physical activity or bodily movement – from decreased insulin dependence among people affected by Type II diabetes to decreased blood pressure, or even increased strength and balance and decreased depression symptoms (Spartano et al., 2019; Castells-Sánchez et al., 2021; Lee et al., 2019; Blanchet et al., 2018). Beyond the likely benefits of physical activity, there too are studies that suggest a correlation between physical activity and cognitive health among older adults (Erickson et  al., 2011) as well as people affected by dementia (Ng et  al., 2019). A significant body of research exists on the increased cognitive functioning, namely executive functioning, as a result of exercise (Öhman et al., 2016; Forbes et al., 2015; Rolland et al., 2007; Pitkälä et al., 2013). For the purpose of this section, let’s explore the why of physical activity inclusion as one component of DGT. Both collaborators co-engage in a physical activity selected by the person living with dementia. There are three reasons why incorporating physical activity into sessions is important: empowerment, performance mastery transfer, and physiological effects. Empowerment The foreground of activity selection is intended to reinforce participant freedom of choice set against a backdrop of a wide variety of physical activity opportunities. Perhaps the physical activity is walking through the woods, rowing a boat or even organizing papers in a filing cabinet in a participant’s home. In line with person-­ centered therapy practices, it is vital to be authentic. One of the ways for a participant to increase their confidence of engagement with an activity – one that may be just a bit outside of their comfort zone  – is for the person living with dementia symptoms to be encouraged to be where they are at the given moment and then nudged ever so slightly to feel, act or behave just a bit outside of their comfort zone. We talked previously about the connections between appropriate dosing of stress and how this positively impacts the learning process. Put differently, the element of threat contained within awe parallels this process. Therefore, encouraging engagement with a physical activity in a way that includes an element of threat magnifies and compliments the work addressed by other areas of DGT.

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Performance Mastery Transfer The selection of activity is certainly permitted to change from one session to the next, always ensuring the activity offers ample opportunity for the person to work through their stated concern. A different activity selection might also be encouraged in instances where the person living with dementia symptoms is consistently selecting an activity that presents little challenge. A meaningful life is dependent on the ability to find activities that are significantly challenging within the scope of one’s capabilities (Csikszentmihalyi, 1988, 1993). Therefore, one of your roles is to hold the confidence of the person living with dementia symptoms at a high level for as long as it takes for them to fully embody their own confidence. The level of confidence a practitioner holds for a participant must be genuine. There is a delicate balance to strike between presenting opportunities for physical activity and doing so with the skill set of the person living with dementia symptoms. The goal is a balanced activity that is not anxiety producing, too demanding, or not demanding enough. It is from the gaining of skills and emotional shifts that occur while interacting with this activity that performance mastery (PM) can be transferred to other areas, such as loss recognition, grief metabolizing, or secure attachment development. Physiological Effects There are physiological effects of engagement with physical or movement activity. This occurs by itself and then, when coupled with exploration of emotional content simultaneously, the impact has the potential to expand. For example, Tappen and colleagues randomly assigned 65 subjects to three different groups: walking, assisted walking, and combined walking and talking (2000). All subjects were tested at baseline and end of treatment. The mean average of Mini-Mental State Examination scores was 10.83. Treatment was given 3 times a week, 30 minutes each session, for a total of 16 weeks. Subjects in the assisted walking group declined 20.9% in functional mobility; the conversation group declined 18.8%; and the combined walking and conversation group declined 2.5%. Another interesting finding that came out of this study was the rate of completion, with subjects in the combined group completing 90% of the intended treatment sessions, whereas subjects in the assisted walking group completed 57% of their treatment session. Now, let’s walk through an example together, using a yoga posture (asana). It is important to note that the practice of yoga is not a physical activity, although asanas can be incorporated into sessions. I have found there are some postures, as well as a series of postures, that are particularly useful for some people living with dementia symptoms and the grief process. In Sanskrit, bandha hasta utthanasana or in English, the locked hand raising posture (Saraswati, 1969). It is executed by beginning from a seated, lying on the back, or standing orientation, always beginning from where a participant is, and follow the below steps:

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1. Place the hands at the sides. 2. Relax the whole body. 3. Cross the arms at the wrists across the front of the body. 4. Move them out away from the body and up overhead. 5. Look up slightly at the wrists. 6. Release the crossed wrists. 7. Allow each arm to extend out to the sides away from the body. 8. Stop when the wrists are level with the shoulders. 9. Hold for a moment. 10. Move the arms upward crossing the wrists above the head with the same arm on top as before. 11. Move the arms down to the starting position below the waist. 12. Allow the gaze to be forward. These steps are repeated and then arms are crossed with the other wrist on top for several repetitions. Traditional suggestions are to repeat 10 times each side; however, in adopting the individualized approach of DGT necessitates that we allow the body to guide the practice. It is suggested that one of the benefits of this posture is an increased breath capacity. Second, heart health increases through systematic blood circulation. Third, the whole body is impacted due to the increased flow of oxygen. Lastly, we see particular benefits in the brain with these physiological changes (Saraswati, 1969). As was just mentioned, an individualized approach maintains that we remain flexible and focused on the therapeutic process or the bigger picture of a treatment plan. In other words, the locked hand raising posture may not be appropriate for some participants. At the same time, limited shoulder mobility or upper extremity amputation would not necessarily preclude a participant from engaging in this posture. We must always be able to execute creativity and innovation when incorporating therapeutic techniques in with a participant’s selected physical activity.

Nature There is an extensive body of work on the benefits of nature exposure and correlations between exposure and psychological, physical, social, and intrinsic benefits (Ward Thompson et al., 2012; Gladwell et al., 2013; Hartig et al., 2014; Pearson & Craig, 2014; Akpinar et al., 2016; van den Berg et al., 2016; Douglas et al., 2017; Ekkel & de Vries, 2017; Wood et al., 2017; Hazer et al., 2018). One study examined the roles of nature exposure and nasal breathing in healthy older adults’ attention and awareness. Evidence suggests an increase in attention and awareness most significantly in the group exposed to nature and engaged in nasal breathing (Ione, 2019). Cognitively, attention circuits are soothed when exposed to nature (Williams et  al., 2018). Overall, nature allows for increased problem solving and creative

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thinking capacities (Atchley et al., 2012). There is transferability between increased neuronal connectivity induced by nature and thinking in day-to-day life. There is an inherent social aspect to being in nature that may transfer to human socializing environments, thereby strengthening both the critical thinking mechanisms of a participant and also the talk therapy portion of this approach. Simply being in nature can also support the development of critical thinking (Williamson & Jenkins, 2023). Nature immersion and exposure support a process of integrating fragments of the self that can then directly impact human flourishing (Schweitzer et  al., 2018). We discussed in a previous chapter the benefits of borrowing from multiple therapeutic approaches such as complementary, flexible, and individualized. Other research points to a strong link between nature and nerve growth factor (NGF) and brain-derived neurotrophic factor (BDNF), a relationship between nature and increased NGF and BDNF in the cerebral cortex, hippocampal formation, basal forebrain, and hindbrain. One such study used rats raised in enriched environmental conditions compared with rats raised in isolated conditions. Researchers discovered that the measure of neurotrophin-3 (NT-3) at 2  months of age was significantly higher among rats raised in enriched environments when compared with brains that were dissected 12 months later (Ickes et al., 2000). Moreover, the dissected brains of rats raised in enriched environments, in comparison to their isolated counterparts, showed a much higher presence of NT-3. As these findings relate to humans, and particularly the role of NT-3 in the context of aging, higher levels suggest a decreased rate of cognitive aging. As it applies to people living with Alzheimer’s disease, we know the relationship between the central nervous system and BDNF. Higher levels of BDNF equate to maintenance of neuronal wiring, plasticity of synapses, and neurogenesis (Numakawa & Kajihara, 2023). All of these functions play a major role in the degree of memory and learning capacities. When not completely surrounded by nature, it is your responsibility to make sure there are the elements of nature present in each session. A participant may be facing many unknowns with the diagnosis process, with grief, or with living with dementia symptoms, and for this reason, it becomes ever more important that the stimuli present in nature exposure provides a high degree of predictability and little that is conflicting or ambiguous (Bernstein, 1975). There are many options available to a practitioner for nature exposure or immersion. Research suggests there are equally beneficial physical–psychological effects to viewing nature on a screen, printed, or actual nature (Brown et al., 2013). As was previously noted, dependent upon a participant’s selection of meeting location, it may be necessary for the practitioner to carry with them printed images of nature or have available on a technological device (e.g., mobile phone) nature scenes. There is a plethora of videos with changing nature scenes available for free on YouTube. When using this option, it is important to consider internet connectivity when at the participant’s desired meeting location. It can be helpful to have a selection of nature scenes available on one’s phone for viewing during sessions, ones which do not necessitate a connection to the internet.

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Grounding Work As the session nears the end (with about 5 minutes remaining), ask participants if they have any questions. Engage in questions raised, recap key areas explored, and state any items you said you will send them. Maybe you offered stick figures of postures you practiced during the session and they said this will support their practice between sessions (see Appendix for example of seated Surya Namaskara). Or there may be other supportive documents discussed during the session, such as a list of feelings from the Center for Nonviolent Communications (2005). The importance of this portion of the session, we will be detailed below, draws from key elements within the traditions of somatic therapy, mind–body principles, and yogic science (Muktibodhananda, 1985; Saraswati, 2012). Additionally, some participants have reported this portion of the session is a peak experience. As we know, peak experiences support the loss integration process (Garcia-Campayo et  al., 2022). This portion of the session relies on three reasons to support optimal dementia well-­ being: awareness of breath and present moment awareness, imagination, and nonjudgment. Each of these areas by themselves carry weight, although it is the combination of these overlapping areas that strengthen both a participant’s motivation for change and DGT as a successful therapy model for people living with dementia symptoms to thrive and flourish. Ask the person living with dementia symptoms, “Which way should we look to close our session for today?” Follow a participant’s lead and patiently wait for the participant to select a direction. Standing next to the person, look in the same direction as them. Pause. Then begin guiding the participant through a series of images and body movements by stating the following: Feel the soles of your feet. Feel roots extending into the earth and grounding you. And then, at the crown of your head, there is a beam of light or a string that connects you with the sky above. Between these two points of contact, feel your breath cycling. With your hands at your sides begin gently moving out away from your body and feel the energy between the palms of your hands. Reach far and wide and feel this energy you have just created for yourself today. When you are ready, take this ball of energy and pour it over you as if it were a giant life shower. All the way down and underneath your feet and then wrap your arms around you. Yes, you are valuable. When you are ready, take note of which arm is on top and switch, wrapping your arms around you. Feel all this energy.

We just explored the significance of grounding work and the schools of thought that inform inclusion as a necessary component of DGT. I also offered a detailed example of how I include this portion of the therapy model. Now we will turn to exploring three reasons for including grounding work in the process of supporting optimal dementia well-being.

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Breath Awareness and Present Moment Awareness The incorporation of present moment awareness is vital to the rooting of the practices that the participant engaged with and completed in this session. It is important to harmonize all areas discussed into a unified whole of the person doing the work. Being present in the moment mirrors presence and awareness of the body. Similarly, the breath, one capability that all living humans have, mirrors the cognitive and emotional processes (Saraswati, 2012). Ending each session on a note where participants can connect with the breath may lead to the possibilities of recognizing other capabilities. Additionally, the breath is a tool participants can use to increase their awareness of other bodily systems. Once a person develops a secure relationship with the breath, this can be used as a model for developing other secure attachments within and outside of the body. This part of the session is an opportunity to allow the discriminative mind to rest and the stilled mind to blossom (Kapleau, 1989). A recognition of the breath is significant in and of itself. The impact of breath awareness extends beyond the present moment and reverberates into and throughout each unfolding moment that occurs outside of the sessions. A second reason for incorporating grounding work is in the transformative power of the imagination. Imagination The investigations on the connections between memory and imagination have a rich history, expanding well beyond the scope of this book. For purposes here, the inclusion of elements of imagination link present moment awareness to the past and the present and draw the participant into the present by developing and strengthening neural networks. For example, research suggests a focus on the hippocampus and other brain areas – including medial and lateral prefrontal, posterior cingulate and retrosplenial cortices, lateral temporal cortex, and the medial temporal lobes (MTL)  – often called the “core network” for episodic memory and imagination (Spreng et al., 2009; Buckner & Carroll, 2007). The hippocampus plays a pivotal role in our ability to recollect past experiences (Scoville & Milner, 1957). It is for this reason that engaging these areas of our brain in an active process of imagination becomes ever more important for ensuring our cognitive heath as we age. The third reason why grounding work is important is the modeling of a nonjudgmental attitude. Nonjudgment One way grounding work reverberates outside of the session is through the practice of nonjudgmental attitudes that cultivate a perspective of equanimity. With regular practice of viewing present life circumstances in a safe environment, allowing any thoughts, emotions, or sensations to arise, as well as recognize the temporariness of experiences, leads participants to shifting the lens through which they view the rest

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of their experiences. Encouraging this process of permission granting is a building block in the formation of agency and identity. These three areas are not distinct and separate, rather each magnifies and strengthens the other. We just discussed the novel inclusion of grounding work in DGT. We explore three reasons to support optimal dementia well-being: awareness of breath and present moment awareness, imagination, and nonjudgment. We will now transition to a rich discussion on data collection and one method for organizing this information in the post-session process.

SOAP Notes Making regular notes in a progress log is one form of data collection. A format that can be adopted is the subjective, objective, assessment, plan (SOAP), which allows for including verbatim explanations of feelings, insights, and observations, as well as grief values obtained from brief self-reported questionnaires. In addition to obtaining subjective data, monitoring and measuring physical strength or sleep patterns obtained from validated measures are also important. Data points can occur at the beginning and near the end of each session. In block one, at the outset of each session, therapists will see instructions for recording a participant’s score of their self-efficacy (SE) of their goals and performance mastery (PM) of their motivations. The latter quantity is measuring a person’s level of confidence in adhering to their stated motivations. The scoring is on a scale from 0 to 10, where 0 is not at all and 10 is very much. For an example of SOAP notes documentation that I created and complete after each session, refer to the Appendix of this book. Other data points that may be collected are determined based on participants’ areas of focus. Some examples of additional data points include, but are not intended to be limited to current levels of, relaxation, health, agitation, grief, and self-efficacy. While these are suggestions on points of data collection, it is important to keep the needs of each participant in mind and data should flow conversationally. If it does not naturally arise, then data should be noted in SOAP notes as did not assess (DNA). The purpose for collecting data is to show change over time and potential impact of DGT. In future chapters, we will become familiar with the data collection process as outlined in three case composites: Vikas, Grace, and Masahiro.

Monitoring Treatment Progress The process of change occurs over time and predominantly between sessions, thus it is important for the practitioner to keep focused on the whole therapeutic process rather than get caught up in the minutia of individual session data collection. It is important to note that the first step in the session format is spread between the initial contact (over the phone or in-person), documented on an intake form, and at the

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beginning of each session. There are many areas to focus on when monitoring treatment progress (Callaghan, 2001). In this section we will discuss three areas: intervention, instrumentation, and insight. The process of monitoring is important to ensure a focus on meeting the intended goals. Assumed in a process of monitoring is also flexibility – allowing for shifts in therapeutic direction.

Intervention Immediately following the intake and assessment session, it should be readily apparent to you which style of intervention you are first going to adopt in working with a new participant. In taking an individualized approach to a continuity of care, it is also important to maintain a commitment to a set of standards that can be measured and replicated. This allows space for continual check on interactions between you and the person you are collaborating with – the person who has invited you to join them on their journey. Appropriate clinical interventions of grief techniques are advised when a person is experiencing “high distress levels or grief related impairment persisting at least 12 months following the loss and have symptoms out of proportion or inconsistent with cultural, religious or age-appropriate norms” (Szuhany et  al., 2021). Complicated Grief Therapy (CGT) is grounded in attachment and interpersonal theories and uses CBT techniques (Shear et al., 2005). With a focus on personal goals and achievements, it might be appropriate to encourage a participant to engage in the story-telling of the losses. Let’s turn to a vignette of Mary, whose husband died 5  months ago, and 2  months following his death she received a dementia diagnosis. Mary, who has lived the past 40 years in Texas, was moved (she was not asked, the decision was made for her) from her home, by her son who lives in Washington, into a memory care center in Washington. Mary’s husband of 45 years died 5 months ago. Upon moving into her new residential space, she was immediately dosed on Haldol, 2 mg, twice a day. Mary is used to going for long drives across the plains of Texas with her husband, and sometimes by herself when he was occupied with a sculpting project. Now, Mary lives in a room within a locked space where 14 other people reside. There is a common living room, kitchen and dining room. Other than for doctor appointments, Mary does not go outside of the locked space. She has access to outdoor between the inside living space and the locked door.

Medication is one type of intervention. Another option is to engage in a dialogue loosely guided by questions (Lichtenthal & Breitbart, 2016). You might invite Mary to consider asking herself questions such as: “Who am I?” or “Who was I before my husband died?” or “Who was I while my husband was sick, 1 month prior to his death?” or “Who was I before I was diagnosed?” and “What have I lost since the death of my former self?” and “Who am I know?” and “Who do I want to be?” It is typical to recognize Mary’s diagnosis of dementia in the context of a loss, yet what is less traditional is to acknowledge the loss as a death of the self. As we will see in future chapters, it can be incredibly supportive of Mary’s quality of life

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to engage in the grieving process not unlike any other death with mourning and rituals. As we have discussed earlier, one of the significances of performing death rituals is to grieve in community. How would the lived experience of dementia be different if at some point a funeral of the former self occurred with family and friends? Now let’s turn our discussion to another portion of measuring treatment progress: instrumentation.

Instrumentation In the selection of instrumentation, it is important that the tools being selected are indeed measuring what is intended to be measured and data collected from these measurements serves a beneficial purpose. For example, a tape measure measures distance. If you are measuring the distance between an outlet and a sink, a tape measure could be a handy tool. If, however, you are measuring the distance between Tacoma and Sacramento, there are more useful instruments other than a tape measure. If we start from the perspective that the diagnosing doctor is correct and Mary is affected by possible Alzheimer’s disease, then we can modify complicated grief therapy techniques to support her where she is at the moment. In other words, sometimes wording of questions may need to be changed or more time spent on some areas. First, however, it could be useful to administer the Brief Grief Questionnaire (Shear et  al., 2006), Inventory of Complicated Grief (Prigerson et  al., 1996), or Briefer Version ICG-13, Revised (Prigerson & Jacobs, 2001). It is important to keep in mind, when you are engaged in the instrumentation selection process, that grief does not necessarily look different across the lifespan. Grief prevalence is not more and yet with a diagnosis of a disease with accompanying dementia symptoms, it is important to remember the presence of other potential layers of loss: aging and death. Additionally, to gauge attachments, the Revised Adult Attachment Scale, the Life Satisfaction Index-Z, and the Herth Hope Index can lend a supportive hand in fully grasping the depth of attachment to self, diagnosis process and death of another, in Mary’s case, her husband (Pahlevan Sharif et al., 2021). One interesting study that measured the role of attachments to family and friends among Iranian adults ages 65 and greater suggested a relationship between attachments and happiness, self-esteem, and self-care behaviors (Yazdani Charati et al., 2017). In other words, there is a direct or proportional relationship between quality of life among these three variables and strength of attachments to others. Other researchers investigated the relationship a person has with the aging process, suggesting the role attachments play in informing this process (Ravitz et al., 2010). The establishment and reestablishment of secure relationships with the current self dictates the unfolding of other processes – dementia diagnosis. You might also find it useful to incorporate the ACE questionnaire (Felitti & Maloney, 1998). As we discussed in Chap. 2, there is a strong relationship between episodes of childhood trauma and later life dementia development (Radford et al., 2017). While research has yet to establish a direct link between trauma and disease

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development, incorporation of the ACE questionnaire can have both micro- and macrolevel impacts. On the microlevel, while ACE scores will not change, a person’s relationship to the traumatic event bringing it into awareness and examining the impacts of it can shift throughout the lifespan as a result of interventions. The effects of a traumatic event vary across people. On a macrolevel, it can be useful to the field of dementia health to understand what interventions might be useful for reducing stress (Corney et al., 2022). From a data collection perspective, the ACE score can serve as an independent variable. We can then readminister, for example, the Traumatic Grief Inventory-Self Report (TGI-SR) to see changes in relationships with grief about a particular event, or even the updated Traumatic Grief Inventory-­ Self Report+ (TGI-SR+; Boelen & Smid, 2017; Lenferink et al., 2022). Although this 18- or 22-item measure (depending on which version you may opt for inclusion) was developed and validated for distinguishing between disturbed and non-­ disturbed grief, as it relates to diagnostic criteria of grief disorders, you may find it a helpful instrument for incorporation in DGT to measure change in relationship to traumatic events. The TGI-SR+ has two parts: losses of loved ones and to what extent you experience grief reactions related to the loss (Boelen & Smid, 2017). By placing this in the context of a dementia diagnosis, one would hold in their mind their loss of self as a result of diagnosis and then to what extent their grief reactions to this initial diagnosis have shifted in the past month. Questions, such as I had intrusive thoughts or images related to the person who died, would be reworded: I had intrusive thoughts or images related to who I once was. Another rewording of a question, to reflect the diagnosis process, reads as follows: I felt stunned, shocked, or dazed by his/her death or I felt stunned, shocked, or dazed by the diagnosis. To be clear, the validity of the TGI-SR+ does not extend to the application of this measure using reworded questions. We will see a return to these data points in the next three chapters. For now, let’s shift our conversation to consider the role dual-insight plays in the therapeutic process and why documenting it is important.

Insight A third method for monitoring treatment progress is what we could think of as dual-­ insight. In any therapeutic relationship, there are two processes of insight that occur. A participant, guided by a professional on how to use tools and techniques to increase introspection, gains insight into concerns they brought to sessions. Simultaneously, professionals gain insight into the degree of usefulness of particular techniques when working with certain participants. Although normative data can be useful, it is also important to balance this against a recognition that no two people grieve in the same way, nor does dementia manifest in identical ways. No one’s grief is like any other. And certainly, dementia grief is varied and heterogenous experience. In the words of Allport: “Each person is like all other people; each person is like some other people; and each person is like no other person” (emphasis in original, 1957). In both types of insight instances, both collaborators have different

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information about the participant’s grief, and this guides them in their work together. Harkening back to a previously emphasized point, open and clear communication is vital to consistent flow of healing, integration, and awareness raising. As you can see, there are multiple ways you can monitor treatment progress. With hopes of beginning the process of creating a robust data set that measures dementia health globally, we must fit our instruments within the context of the existing Global Action Plan on Dementia. It is important to ensure that measurement of variables is within the delineated action areas discussed in the previous chapter. At the same time, I am offering the framework of a therapeutic approach that has continued to evolve over the span of more than 20 years. Thus, another tool you might find helpful is the Short Form-12® (SF-12). This is a 12-item instrument based on a condensed version of longer forms that include a greater number of questions, and it is both reliable and valid (Ware et al., 1996). Interestingly, a group of researchers recently proposed the use of SF-12 as part of a predictive model for Alzheimer’s development in community-dwelling older adults (Phyo et al., 2021). My reason for incorporating it into DGT is again to measure change. It provides a broad measurement of both physical and emotional health, which is particularly insightful to the main integrative technique of DGT. Through the DGT process, we witness shifts in peoples’ body mechanics and how this shift mirrors shifts in the emotional process. Let’s now turn to a vignette to further understand this point. Below, we will meet Hazel, age 99, received a dual diagnosis: major neurocognitive disorder of unknown etiology and prolonged grief disorder. Hazel, age 99, predominately relies on a wheelchair for mobility. In sessions she has been discussing her emotional upheaval with her mom and the resentment she currently feels in having cared for her when Hazel was in her 40s and 50s. “I just feel like I missed out so much on life. There were things I wanted to do, but I couldn’t just walk away from her. She needed my help.”

We engaged in leg activities that we do regularly (strengthening quadriceps and hamstrings) and completed this particular session with participant directed increased fervor and vigor. Toward the end of our session, Hazel said, “I think my legs are strong enough to stand now.” I said, “Let’s do this. Where do you think is a safe space to try?” She looked out into the kitchen and said, “I don’t know about safe, but I would love to stand at the kitchen window and look outside. I never thought I’d say I miss doing dishes, but I do because looking out the window was so pleasurable.” We walked toward the kitchen sink and Hazel placed her hands on the counter, gripped the sink, and transitioned from a seated to standing position. She said, while standing and looking out the window, “Maybe it is helpful to this Hazel to recognize how hard it was for younger Hazel. I think I can say, and believe, Mom was a good mom and she was also selfish.” It is clear from the areas we have covered regarding the importance of maintaining regular and consistent documentation in SOAP notes I see regular and systematic monitoring of participant’s progress as one method of best practices. For the purpose of this section, we have discussed three areas of monitoring and inclusion in SOAP notes: intervention, instrumentation, and insight. Effective and efficient monitoring is vital. Similarly, measurement is equally important. Now, let’s take

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into consideration three other areas of data collection that you might consider monitoring or noting after your sessions: subjective experience, behavioral change, and symptom relief.

Subjective Experiences Grief therapy with people living with dementia symptoms, a rarely studied area, should definitely take into consideration a comprehensive evaluation process. For the purpose of this section, let’s consider three important evaluative areas, which are as follows: subjective experience, behavioral changes, and symptom relief. One measure of an effective therapeutic approach is when a person talks about “increased feelings of self-esteem and less guilt” (2018, 177), which may translate to increased self-efficacy. This in turn may meet one of Nussbaum’s outlined capabilities: ability to have control over the environment (2006). All of this is to suggest an increase in flourishing, beginning at the microlevel and extending to the macrolevel where people living with dementia are seen by society as valuable and contributing members in society.

Behavior Change For people living with dementia symptoms, changes in behavior would translate into a complete or isolated eradication of BPSD. In terms of standard grief therapy, searching behavior stops, socializing begins, and new relationships form (Worden, 2018). These grief symptoms are precisely what are pathologized as BPSD in people diagnosed with dementia. For example, if a person, exhibiting BPSD, is searching or pacing and then is exposed to grief therapy techniques, to what extent are symptoms eradicated? This might seem too simple of an explanation, because, as we have questioned in previous chapters, perhaps BPSD is a protective response to systemic imbalance or disequilibrium. Or further, it is a response to treatment within memory care spaces. More care in analyzing the functions or behaviors is critical to a full understanding of behaviors. To elaborate for a moment, a specific way treatment centers offer activities to residents is pervasive across memory care spaces. On the surface, an appearance is given of presenting residences with choices. For example, when activities take place in a different area of the unit, with no assistance or guidance on how to get from here (room) to there (living room), these are not actual choices. Further, if one does not hold a sense of worth of occupying certain spaces, then this neither is an actual choice. Involvement includes a shifting in a sense of self to include dignity and worth, and also to whom justice is extended. The sustainability of DGT approach emphasizes a model of self-empowerment.

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Symptom Relief Another area to consider tracking or measuring is symptom relief. When a person is exposed to DGT, perhaps there are detectable neuronal changes in the brain. DGT entails specific therapeutic procedures and guidelines to follow in delivering the most efficacious treatment. It has long been believed that the bedrock of grief work is in the detachment from the deceased (Freud, 1922). If, as I suggested before, one part of the grief work of DGT is focused on integrating the loss of the other within, then the deceased is housed within the body. What needs to be present in a person’s world in order for them to fully detach from their former self? Is this even possible? We will see symptom relief resurface when we explore the three case composites. As we discussed at length in the complicated grief section of Chap. 3, there are three areas of procedural importance when working with people living with dementia symptoms: reviewing of memories of the deceased self, assess struggles with specific mourning tasks, and explore and defuse linking objects. In the above section, we focused on one part of the SOAP note process that is concerned with evaluating the results of treatment by considering three areas of measurability: subjective experience, behavioral change, and symptom relief. I hope it is clear to you where a lens of complicated mourning may offer a different view of BPSD. In so doing, BPSD may be seen as a set of strengths, replacing a medical model informed view of BPSD as deficiencies. A recognition of strengths or capabilities can then lead to greater flourishing and, in turn, a more socially just society.

Demonstrating Clinical Usefulness Individualized person-centered care is strengthened by N of 1 studies (O’Lillie et al., 2011). Additionally, the concept of developing a minimum threshold of human flourishing and justice, informed by the capabilities approach, highlights the importance of opportunities for people to develop their emotions (Nussbaum, 2009). One method for developing emotions is by having access to grief-informed therapies. In determining this threshold, Nussbaum suggests that the goal may sometimes be adequacy and other times equality, yet always shall be culturally situated. In other words, the shape of flourishing is informed by social and cultural norms. In the cases of grief and dementia, we can turn to WHO and International Classification of Diseases (ICD), “international standard for reporting diseases and health conditions” for unilateral agreement of diagnostic norms (2019). As was previously noted, the main aim of WHO is to “improve clinical utility and international applicability” (2020). Having an agreed upon global agenda of dementia proves beneficial at the individual and policy levels. In the next chapter, we will consider important ethical areas of DGT. Following this there will be three chapters, each of which introducing a separate case composite. In presenting these cases studies, it is my

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hope that I can demonstrate the clinical usefulness of DGT through the dissemination of case reports, as well as analysis of data collected over the years.

Chapter Summary DGT is an exploratory, nonjudgmental, integrative, person-centered approach used to support a participant along their journey to the self. When you join them on their journey, you begin from a place of emphasizing human dignity (refer Fig. 6.1). It is from this foundation where the process of grief acknowledgment, validation, and integration begins to unfold. Ultimately, the hope is that with a strong sense of agency a person strengthens his/her self-respect that leads to an individual living a meaningful life by making micro- to macrolevel changes. We began the chapter with a deep exploration of how grief (sympathetic–parasympathetic axis) interacts with dementia (loss–love axis) by considering the role of attachment dimensions (refer Fig. 6.2). We will also discuss the roles of attachments within different layers existing within a person living with dementia symptoms: aging, trauma or grief, and death (refer Fig. 6.3). Additionally, we considered how these layers are in dynamic feedback loops within the unified lived experience of dementia symptoms (refer Fig. 6.4). Necessary and distinct features of DGT, which is a flexible, right’s based, trauma-­ informed, integrative therapeutic approach, were outlined. Necessary components of DGT that overlap with other therapeutic approaches are the processes of treatment planning (informed consent, intake, process of change, monitoring progress) and note taking. DGT uses the subjective, objective, assessment, plan (SOAP) format of note taking. Within this section on note taking, I offered some areas that might be considered as ways to monitor treatment progress. Additionally, there are five distinct clinical features that differentiate DGT from other treatment modalities: collaborators’ orientation, session location, physical activity, nature, and grounding work. With a thorough understanding of the theoretical underpinnings and practical applications of DGT, it is necessary to consider the previous chapter and any ethical considerations. My educational background and scope of practice is broad and unique. It is important for readers who are interested in implementing this therapeutic practice and contributing to generating a robust data set that you always operate within your boundaries of comfort and your own scope of practice.

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Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Describe three ways DGT highlights human dignity. 2. Apply attachment dimensions to conceptualize the body–brain landscape. 3. Discuss importance of understanding a history of trauma.

Further Inquiry In what ways is it pragmatic to believe a person diagnosed with severe dementia shall at some point in their future influence public policy? What is the most efficacious way for demonstrating the clinical usefulness of this approach? To what extent is it important for the practitioner to hold participant’s questions within the context of aging and explore them through a lifespan perspective? In what ways do people who are diagnosed by severe dementia exercise agency?

Appendix QR code where you can gain access to the intake form I have developed.

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Case Conceptualization

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Chapter 7

Case Composite: Masahiro

Key Points • The roles grief may play in understanding dementia health. • The importance of contemplative listening skills. • Using attachment dimensions between love and loss as a model for internal relationships.

In the sections that follow, we will first get to know Masahiro and how he and I came to cross paths. We will then discuss a basic overview of the intake process including an historical understanding of four areas: physical health, losses (see Table 7.1), relationships, and protective factors. We will see woven into this chapter an acknowledgment of a history of trauma. For example, in some instances, trauma is a protective factor and other times it impacts current and future relationships. The second section focuses on goals and motivations. Within the third section, Explorations, Interventions, and Discoveries, we will discuss the desired meeting locations and ethical considerations, physical activity, nature, and dimensions of well-being. In the fourth section we will explore overall outcomes from the extensive work Masahiro has done during our collaborating. We will also draw out thematic discoveries made by Masahiro. Lastly, I will summarize the main points in presenting this case composite.

Background Masahiro was born in 1912, in Chiba Prefecture, in Japan, during the Taishō period. Two years after his birth, World War I began. When Masahiro was 11 years of age, a massive earthquake, known as the Great Kanto, completely demolished cities, © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_7

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274 Table 7.1  Loss history Loss # 1 2 3 4 5 6 7 8

Loss type Dad Mom Grandfather Earthquake Internment camp Wife Son Health

damaged buildings, sparked a fire, and ended many people’s lives. Masahiro’s father and grandfather, both politicians, were killed when the building, in which they were attending a Saturday afternoon social event, crumbled. His mother was also killed when she was at a social tea with a lady’s social club. Masahiro’s brother, Akiyama, was 19 years older than him and left home to be a Shinto priest when he was 18. His sister, 2 years older than Akiyama, Izumi, also left home when she was 18 to pursue being a Shinto priest. Suddenly, Masahiro, raised as an only child, was an orphan. He was put on a steamer boat to Sacramento, California, in the United States to live with two aunts. Masahiro remained in California, attending college, earning a 4-year degree in business administration and married Chieko, a woman he met in his freshman biology class. They stayed in Sacramento, had two children, and grew grapes and strawberries. Instead of looking for work in their educated fields, they followed their passion for the science of farming and enjoyed farming as a family. In the 1940s, they were all sent to a relocation camp. Masahiro’s wife and son died in the camp and after the war, he and his daughter, Mary Alice, returned to their land. Mary Alice went to college and relocated to Washington. In 2000, Masahiro joined Mary Alice in Washington. Mary Alice contacted me and asked if I would work with her dad, stating, “He’s 103 and he says he knows what’s going on, but there’s no way. Lately he’s been saying people are sleeping in his room and a woman on a hill snapped her neck and just bizarre stuff. I don’t know what to do.”

Intake When we started working together, Masahiro was 1 month shy of his 104rd birthday. I knocked on his door where he lived in a long-term care community (LTCC), he turned from the window, looked at his watch and said, “I know you know Mary Alice. She’s worried about me. You think I can I ask you some questions?” I responded by asking, “Can I ask you some questions?” He smiled and said, “How will we decide who goes first?” I suggested, “Go ahead. You had the thought first.” Masahiro asked, “Why do you think I’m sort of alive?” I responded, “I don’t know.

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Why do you think?” Masahiro quickly responded, “Well, I am strong and I drank cows’ milk and always got up before the light. I was in California…sometimes I wonder why my heart still ticks or what makes my heart tick. There was a time when it stopped ticking and that was very scary for me. I was very sad. Then I woke up and my heart was ticking and now I check. From time to time I do this.” Masahiro took his right thumb to the back of his left wrist and his index and middle finger to the inside of his left wrist. “I check like this,” he demonstrated. I asked, “What are you checking for?” Masahiro said, “My pulse and sometimes it may go too fast, but most of the time I can feel it and that makes me feel relaxed. I also breathe. If I get afraid that I won’t feel it, then I just breathe and then I do feel it.” He continued, “You know, one of my bad qualities is that I don’t hear a lot and I don’t see much. I remember though. And then people say, that’s OK if you don’t remember. Then I think, maybe you don’t remember because I never said I don’t remember. And really? Is it OK to not hear or not remember? I don’t think it is. This would be a disgrace to lose memories. Unless I could be selective in losing. Maybe this would be OK. The Lord didn’t make us this way.” Masahiro mentioned it would be nice to go outside, except he presented with a large amount of fear. “See, at my age, you can’t be too careful. And really, am I missing anything by not being out there. I know I’m missing the chance of falling. I fall and that’s it. Let’s say it’s a long-term goal.” As we were wrapping up our intake session, Masahiro mentioned, “I see that it’s almost time for dinner. I’ll be meeting my eating companions soon. We sit at tables of four. I sit with three ladies.” I said, “Lucky.” Masahiro said, “Lucky? I don’t know if I would say that. More like scary sometimes. That many women…” A large smile grew across his face, and he shook his head. We made our way to the door and into the hall and walked toward the dining room together. Masahiro continued to comment on his dining companions, saying, “Well, others are envious though…You know, envy is not good to have. Envy. Hmmmm…Do you know mass?” I respond: “Yes. I’ve been. And you?” Masahiro said, “Yes, very often. I know Latin….Tempes fugit mors manere…” I said, “Time flies. Death waits.” Masahiro let a big laugh and said, “I guess you do too.” I said thank you for sharing your time today, when we get to this door on the right up here, I am going to leave. He said, “Yes, and I will see you next time” I said, “Dōmo arigatōgozaimasu,” Masahiro stopped and said, “Japanese too? OK, I’ll try harder with my exercises and breathing you showed me.” Masahiro expressed one of his motivations for engaging in self-exploration is “I know a lot more about what’s going on than people think. You know I don’t trust many people here. Sometimes what they say and what they do doesn’t always match up. Then again, maybe I forget…which I guess is understandable for a mind that’s more than 100. I think it’s tired. I’m not just my mind though. I’m a body too. And my body knows…even when the right words don’t come out…I just need time for the words to travel from my body to my mind to my mouth. Or, I need someone who can read my body. Not everyone can. Actually, very few can. It seems you can.” Masahiro had a history of being physically fit, having engaged in farming in Sacramento. When in Japan, Masahiro played yakku, baseball. When moving to

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Sacramento, he would play baseball with the neighborhood kids, although his aunts were strict about his studies. Two areas Masahiro expressed interest in strengthening were his arms and legs. “It sure would be nice to have just a little more strength then I do in my right hand. I can’t use tools like I used to.” Masahiro expressed particular enjoyment in building things. “On the farm, before they stole my wife and son’s lives…we built a big barn. So much love and sweat went into that building…well …building and losing them made me stronger. I just hope I did really good for my daughter. She is exceptional. OK, let’s get this body stronger.” Masahiro identified colors of resistance bands that I retrieved from my backpack and was curious about their use. First, he selected a green resistance tubing with handles, a tubing with approximately 70 pounds of resistance. We secured this to the door with an apparatus and his max pull was 9 inches from point of attachment. “I think I could pull more…my grip gives out.” We then used a padded cuff around his right forearm with a resistance band of about 30 pounds attached to a bottom rung on his wheelchair, for the purpose of engaging his biceps. He completed two and said, “Ah, yes, I could get used to this.” He completed three more for a total of five. “I was tired when we started. I’m tired from pulling. Why might I feel more energy?” Masahiro’s cognitive functioning, according to medical records, indicated major neurocognitive disorder, with etiology of probable Alzheimer's disease. In our initial session, he presented clear declarative and semantic memory functioning, evidenced by comments made toward the end of our session when he said, “Let’s see if I understand. Your first name has a lot of letters and begins with an A. You are 35. I do know you know Mary Alice…and…you are a wanderer.” I carry a backpack with me when working with people and at one point Masahiro asked where I was traveling to? I shared with him I always have my backpack. Masahiro presented with a number of protective factors. From an observational perspective, it was clear Masahiro was highly engaged with, and aware of, his environment. Similarly aware was he of his body as well as kinesthetic sensation. “I think my hearing is better because I only have one eye. And I think my taste is good because I have one eye. Sometimes I do think with my eyes closed. I think when we rely on one thing too much then it wears out. Just like people…or love.” We explored a bit about the role love has played in Masahiro’s life and how this supports him in his current living space. “Love has touched me very often. Love has helped and hurt. I don’t cry.” We discussed how a strong commitment to not crying is a strength. In other words, discipline. Let’s now understand a bit about Masahiro’s goals and motivation in the below section.

Goals and Motivations Along our journey, Masahiro’s goals shifted from the existential to the physical to the spiritual. He often engaged in understanding why he is still alive by questioning: “Is there something I am missing? Something I haven’t done yet and once I do it then I’ll be done here?” He continued to share throughout our time together, “I want

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to keep doing all the things for myself and serving the Lord.” One of his physical goals was feeling stronger and having increased use of right arm, “it needs to be stronger…and it will help in playing a full game of Yahtzee.” On the existential level, he remarked, “I want to make a difference.” I asked him if there “is a difference between making a difference, making a difference that makes a difference and knowing the difference has made a difference?” He responded, “You’re a good teacher…and this is my homework. I’ll let you know next time.” Spiritually, he also maintained a strong faith and “commitment to serving the Lord.” At one point he remarked, “I think Hell might be closer than I may want.” We spent time exploring his past and current actions and thoughts and how these might lead to him experiencing an enjoyment of all good when he dies. His strong Catholic faith was a constant in our work together.

Explorations, Interventions, and Discoveries Masahiro expressed, “I think when I move it makes a difference in what or how much I can remember.” Masahiro had some specific ideas about overlapping explorations. For example, “I sometimes forget and I don’t like it. I am ashamed. I would like to remember when my daughter visits because I think she visits more than I remember.” Masahiro shared he had been walking the halls and moving in his apartment “to remember and to stay awake and I enjoy being of service. When I’m in the halls then people can ask me to do something and I like this. I help that person across from me open his mail every day. I like to do this.” He shared at our third session, “I think things are changing. More activity going on for me in here. There’s also been a lot of activity out there. And I fixed my lamp. I’d rather say we are now in similar conditions.” We both laughed and I said, “Similar, not the same though, because I don’t see duct tape holding you together.” Masahiro laughed and said, “OK, and I can feel and the lamp can’t. So it gets duct tape and I get feelings.” One of the interventions we utilized incorporated strength, balance, flexibility, and range of motion. Specifically, the activities included a single set of the following: chest press, with about 30 pounds of resistance, at full range of arm extension. This activity was repeated 5 times. Leg extension activity, using body mass resistance and progressive muscle tension techniques with equilateral extension range of leg extension. Masahiro was prompted to extend both legs only as far as both could extend. In other words, his right leg could extend at a greater degree than his left. He extended both legs to the degree of his left, approximately 160 degrees. He completed eight repetitions. With biceps curls, using a resistance band of approximately 30 pounds of resistance, he completed five repetitions, with full arm extension and executing at approximately 120 degrees. While doing these he said twice, “I like this.” To engage his abdominals, he transitioned from seated to standing holding onto table, completed over the course of 17.98 seconds at the intake session. He then aimed for sitting down at a rate of half this time, approximately 4 seconds. He pondered, “I wonder if I could take twice as long to sit down as I do to stand up.”

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7  Case Composite: Masahiro

We set this as a goal. Lastly, we engaged in a seated upright row using the 30-pound resistance band. He executed this to completion, at five repetitions. Masahiro commented at the end of our session, “I said I would like to feel safe in my chair...If I keep doing these, when you’re not here…I’ll be able to do more and think more.” In addition to interventions related to physical activity, due to Masahiro’s expressed goals, we also engaged in thought experiments. Masahiro once commented, “Although you are not much of an entertainer, you don’t tell stories about nuns with horns or anything, you sure do make me think. Really think. I fall asleep thinking. I haven’t done this in quite some time. I feel calmer. Not so scared that I won’t wake up.” A discovery Masahiro made was a connection between feeling calmer and execution of one of his goals: “I’d like to stick with one of my original goals of walking outside, except with a fear of falling it seems the only safe way to be outside is when I die. Maybe I can try that breathing you showed me.” One of the interventions we focused on was utilizing the breath to create physiological changes Masahiro desired. He had a history of being aware of his breath. We expanded on this awareness. For example, based on Yogic science, inhaling through the right nostril produces an activation of the sympathetic nervous system (Saraswati, 1969). Conversely, inhaling through the left nostril primes the parasympathetic nervous system (Saraswati, 1969). Masahiro shared two examples of using the breathing technique. He said, “When I work so hard all day and get nowhere, then I feel like a failure. I try to be calm. Then I try that breathing you showed me. I think it makes a difference. I would feel successful if you ate some cookies.” Another example was when Masahiro shared, “I’ve been walking more since I saw you last. And focusing on my breathing. Also, the band you left, it’s hard to pull. I like that. I see where I can feel successful.” When Masahiro was interested in engaging his sympathetic nervous system he said, “I’m just so tired. I try breathing in my right. Maybe it helps.” One other way Masahiro employed the breathing techniques was when he said, “I want my thoughts to come like they used to. I try breathing when my thoughts need help moving.”

Overall Outcomes Masahiro’s physical functioning continued to increase throughout our 16 sessions (1 session per week). Three days before our 17th session, Mary Alice, Masahiro’s daughter, called and said, “He has contracted the flu and is in the hospital.’ He keeps telling the nurses and doctors who come in “the teacher showed me how to not be so afraid. My bones are relaxed. If you’re a good doctor, then you can read my body like she can. I don’t know where she learned it. She’s a child.” Initially, they diagnosed him with delirium and were in the process of beginning to administer Haloperidol intravenously when Mary Alice entered the room. She offered contextualization for his comments and the healthcare professionals were leery stating,

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“OK, if you’re going to be here then I guess we just keep alert and see if it worsens and well…then go from there.” Overall, Masahiro’s cognitive functioning fluctuated. The greatest outcome from Masahiro’s journey into self-exploration is less about changes in manualized cognitive testing and more about an expansion of a secure relationship with his body and mind. Masahiro recognized two separate people walking outside his window at a distance of 100 feet and was able to create a story of what might be going on. “She is looking at the ground,” he said, I asked, “Is that your girlfriend?” Masahiro responded, “Maybe she lost something. Maybe she’s looking for something.” This is evidence of a continuation of original thought. I asked, “What is she looking for?” Masahiro responded, “If she was my girlfriend, then maybe she was looking for me…because at more than 100 if I’m not in the sky then I must be in the ground.” This is evidence of integration of previously discussed information as well as exhibiting a sense of humor. Another mark of cognitive functioning is at the end of a Yahtzee game he stated, “I feel very sorry for you and I respect you.” I asked, “Do you want to say more?” He said, “You keep losing and you keep coming back to play again. 371 is more than 220, so I win again. Are you going to come back?” One way we can interpret this is critical cognitive functioning of visualization, directionality, as well as visual–spatial recall and recognition. Additionally, Masahiro commented, “Now it’s that time. You better be traveling on.” I asked Masahiro to clarify, “What time is that?” Masahiro responded, “You always leave about this time.” The consistency of our sessions, always occurring on Fridays at 2:30 p.m., potentially offered a strengthening of a secure relationship. From this base combined with his other strengths, it seemed he was able to extrapolate an increased sense of security in his body. For example, I knocked on Masahiro’s door prior to the beginning of one session, he turned from the window and said, “There you are. It must be Friday.” The overlap between cognitive functioning and recognition of losses was also apparent. He once remarked: “The empress of Japan died...There’s a lot of death here.” I asked, “You’ve known two of the empresses of Japan, yes?” He raised both eyebrows and responded, “Yes. My mom and then my wife… I was faithful one time and always…through sickness and health. But God wanted her for his own so that’s the way it was.” Masahiro continued to explore his relationship with death for several sessions. He commented, “In a place like this, death is all around, although I am not sad…I am also not happy. Both of these could change …I think I’m changing. There’s life in my bones like that sunny day on the tractor in Sacramento when I just know she was there. She stayed with us at that home. I know she did. No one ever bothered us. Not everyone had an angel like her.” He was referencing returning to his land after World War II, with his daughter and tending to the strawberries and grapes. Another outcome of loss integration was when he asked if I wanted to walk to the dining room with him. Once there he shared, “We lost a woman the other day. She was sitting right there and we were all eating and then she choked. I guess she

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7  Case Composite: Masahiro

decided it was easier to lie down and rest. And then they took her. I didn’t cry though.” I asked, “Did you think about crying?” Masahiro said, “Well, she’s kind of been chasing after me for a while and I didn’t want to get involved. Particularly after what happened to the last woman who chased after me. Her neck snapped. It was caught in the barbed wire. I’m glad she will be with God. He’ll take care of both of them.” Masahiro was referring to a woman he met in an internment camp who was friends with Chieko, Masahiro’s wife, and who offered support to Masahiro with Mary Alice and Wayne after Cheiko’s death. It was with the work Masahiro did on acknowledging having not previously grappled with the complexities of previous losses and acknowledging the impact the current death had on him, that he was able to begin to integrate some of the loss (reference back to Table  7.1 in the Intake section). Masahiro’s relationships with his daughter, grandchildren, and great-­ grandchildren are important to him. He worries about their health and well-being and “just want to make sure they are OK. You know Mary Alice has been really sick. I wish I could make her feel better. And I know there isn’t anything I can do. When it’s our time to live in eternity then so be it. We just have to try and live as right as we can now. Mary Alice lives right. She drives so far to take care of me. She has so much responsibility. She is so good about everything. I know she’ll be taken care of in the afterlife.” As I was leaving, Masahiro said, “I knew someone else who rode a bike all the time. Not nearly as pretty nor as strong as your bike.” I had not mentioned riding my bike this time, although I wondered if Masahiro noticed a helmet attached to my backpack and this being a reason for his comment. This did not necessarily suggest him forming a memory from seeing it the week prior. Although potentially he had formed a memory and recalled it, for when I responded by saying, “That bike is really strong.” He quipped, “The rider is strong too. You remembered to bring your helmet in with you.” Last time, I left my helmet in the front basket and he commented, “Why do you leave your helmet for someone else to take?” Masahiro ended our last session (although neither of us knew it at the time) by sharing, “Now my bones feel better. I am more relaxed now than ever before. Now I can focus more on figuring out if I have made others happy.” It was also during this session that I asked if he wanted to go outside. He said, “Let’s try.” We turned the corner and Masahiro began to walk toward the front doors. He pushed the button to initiate the automatic door opener, he began to walk through the doors, paused and said, “Uh oh. That’s uneven. I don’t think so. Very unsafe.” I asked, “What if we went outside in a way that is safe?” Masahiro said, “There isn’t much that seems safe anymore because I can’t hear a lot of what people are saying...it sounds all mumbly.” I asked if he could feel. Masahiro said, “I feel a lot of pain...less bone pain then I once felt…and now some happiness.” Once fully back inside, we discussed the process of goal setting, working toward it, making attempts and modifying throughout the process. Masahiro shared, “I like this. I feel more successful. I didn’t go outside…I succeeded at trying…and my pain…could it be I don’t hurt as much?”

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Case Summary A unique feature in the work we did together, over the course of 16 sessions meeting once weekly, was in some ways abandoning any agenda of the process of change and rather opting for an execution of contemplative listening skills (Perelman & Olbrechts-Tyteca, 1969). In our intake session, I heard two resounding desires for Masahiro. One was to feel calm and settled with his life overall and a second was to feel a sense of purpose. He established one way of feeling a purpose necessitated him strengthening his body. When Masahiro witnessed one of his dining companions, dying by choking, this triggered a memory of a woman he saw in a concentration camp getting stuck in the barbed wire and “her neck snapping.” The tragic event at the internment camp was enveloped into two other losses he experienced, his wife and son dying. He used these events as a catalyst for strengthening the secure relationship with his daughter, Mary Alice. Additionally, Masahiro identified where in his body he felt the grief (see Fig. 7.1). His locating the physical location of felt grief, allowed us to use various physical techniques to interact with the loss. For example, he identified a tightness in his biceps. We used conscious contraction and relaxation of the biceps and complementary and neighboring muscles and their tendon attachments to fold into the experience of grief. In this case, grief was presenting as a tightness in the biceps. We sometimes engaged in biceps curls, triceps extensions, and other times yoga postures, such as versions of downward and upward facing dog (in Sanskrit: Adho Mukha Svanasana and Urdhva Mukha Svanasana, respectively). After leaving the camp, he maintained these were protective factors that kept him going (suggestive of performance master and self-efficacy). Later in his life, during the time we were working together, he acknowledged, “Being faithful is one thing. Grieving is another. I only ever did one.” One measure of physical change that occurred simultaneous to an exploration of grief was at the intake his 90-degree rotation in his chair was executed at 4.61 seconds. At the last session, his 90 degree rotation was 2.18 s. This is a change of 2.43 seconds less to complete the same task.

Fig. 7.1  Areas of focus

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7  Case Composite: Masahiro

Overall, he averaged this rotation at a rate of 6.65 seconds. On two occasions, his rate of 90-degree rotation was 28.96 and 16.24 seconds. These were two sessions where we spent considerable time exploring losses.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Recognize the importance of executing contemplative listening skills. 2. Increase your understanding of overlaps among physical and emotional health. 3. Explore the benefits of withholding an agenda and meet a participant where they are, beginning from the beginning at the beginning of each session.

Further Inquiry Transforming trauma experiences into protective factors. In what ways can focusing on love guide loss in finding a comfortable home in the body?

Appendix Case Conceptualization

Case coneptualization: Masahiro Areas to explore Data collected 1. Comprehensive “My ears are working for me right now. And my eye. This one is real list of problems good” “People think I’m crazy. I said, a woman on a hill snapped her neck and they want to put me in the looney bin” “I don’t want to go outside” “I never cry” “I’m not quite ready to die. I know there's something I need to do first. I can’t quite put my finger on it” “I have never grieved in my life” Predisposing: Hx in internment camp, parental death Precipitating: strong commitment to not grieving “it shows weakness” Perpetuating: “People who work here are not always honest” Protective: strong faith, multilingual, honest

References

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Case coneptualization: Masahiro Areas to explore Data collected Family Hx: mom, dad, and grandfather died in earthquake – brother and sister died – wife and son died 2. Nature of problem “Complicated mourning exacerbates current expressed concerns” “Maybe I need to learn to cry” “None of this would be a problem if people were honest. It also wouldn’t be a problem if we believed old people. I may not always know my age… I know when someone is sleeping in my room” 3. Identify patterns Sociostructural conceptualizations of people age 103 in problem Reluctance to grieve

References Perelman, C., & Olbrechts-Tyteca, L. (1969). The new rhetoric: A treatise on argumentation. University of Notre Dame Press. Saraswati, S. (1969). Asana Pranayama Mudra Bandha. Yoga Publications Trust.

Chapter 8

Case Composite: Vikash

Key Points • The roles grief may play in understanding dementia health. • What are methods for increasing self-efficacy? • Effects of integrating past losses into current self-narrative on cognitive functioning.

In the sections that follow, we will first be introduced to Vikash and how he and I came to cross paths. Vikash is a case composite intended to protect the anonymity of actual participants. Names and places have been changed to protect confidentiality. Additionally, as we learn more about Vikash’s experiences, please remember these are his lived experiences and do not represent all people who share similar ethnic and cultural backgrounds to Vikash. Second, we will discuss a basic overview of the intake process including an understanding of his history of four areas: physical health, losses, relationships, and protective factors. We will see dispersed throughout this chapter an acknowledgment of a history of trauma. For example, in some instances, trauma is a protective factor and other times it impacts current and future relationships. The third section focuses on goals and motivations, which helps frame the fourth section: Explorations, Interventions, and Discoveries. Here we will discuss the desired meeting location and ethical considerations, physical activity, nature, and dimensions of well-being. In the fifth section, we will explore some overall outcomes from the extensive work Vikash did in the following areas: physical, social, cognitive, and emotional. Included in this section will be thematic realizations and bodily systemic connections made by Vikash. Lastly, I will summarize this case composite presentation.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_8

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Background Vikash was born in the United States, in 1950, 6 months after his parents immigrated from Hyderabad, Telangana, in India. His parents immigrated at a time when only 100 people from India, each year, were allowed to immigrate to the United States. His father was conducting research at the University of Minnesota, during the first 5 years the family was in the United States. They then relocated to California due to a research project on which his father was the primary investigator. Vikash was the oldest of seven children. His father traveled often for research and when home, drank alcohol excessively and was verbally and physically abusive. Vikash was the target of the abuse, although his siblings often tried to intervene. After graduating from Harvard Business School in 1972, Vikash took up employment at his uncle’s high-end real estate firm in Connecticut and stayed with him until retiring in 2014. He lived by himself in a home he owned and was very close with his two sisters and four brothers. In 2015, he sold his home in Connecticut and moved to Washington State where three of his brothers and one sister lived with their families. His other two siblings were no longer alive. He purchased a condo overlooking the Puget Sound and spent his time golfing, volunteering, and socializing with friends. For several decades, when living in Connecticut, he made biannual visits to Washington for golf tournaments. During these visits he developed friendships with other men in business and real estate. In 2017, Vikash’s family started to express concern about his personality and behavior. They encouraged him to go to the doctor. He saw his primary care doctor who, after conducting a routine cognitive screening, scheduled a follow-up assessment and imaging. In 2018, one otherwise ordinary day, Vikash went to the store and while driving his vehicle, he rounded the corner at an intersection, drove onto a curb, and his vehicle struck a person who was pushing a stroller with a one-and-a-­ half-year-old child asleep inside. Vikash did not realize he had hit the people and continued to drive down the road, turned into the store parking lot, and entered the store. He returned home, turned on a golf match on his television, and 1 hour later watched the nightly news, a routine he did often. It was while watching the news he learned of this hit and run incident where the person in the stroller died instantly and the person pushing the stroller died on the way to the hospital. He recognized the intersection they showed on the news as he had driven through the intersection thousands of times. He also recognized that this was the intersection he had driven through earlier in the day when he drove onto the curb. He called the police and then called his brothers. Six months later, with one brother named his legal guardian, he moved from his condo into an apartment in a senior living community. Vikash’s brother Ravi contacted me and said, “I heard you’re a miracle worker. My brother is so angry and has gained so much weight so fast. I don’t want him to die.” I shared with Ravi, “I am an ordinary person, your brother is going to die one day, and I look forward to connecting with Vikash and will ask him if he’d like someone to join him on his journey.”

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Intake I went to Vikash’s apartment where Ravi and his other two brothers (Vivek and Ajay) were unpacking boxes and hanging photos and items on the walls. Vikash said, “They kidnapped me from my life and put me in this place with a bunch of old people. My car is in the parking lot but they won’t let me drive. They have my keys.” I asked Vikash if he would like to take a walk to the putting green? He said, “You bet I would. They won’t let me go anywhere though. They watch me more than our parents ever did. I don’t know where they learned it.” Vivek and Ravi both said, “Vikash, you can go with her.” Vikash said, “Oh great, a fuckin’ babysitter.” I said, “Babysitting is a lot of responsibility. Thank you for being my babysitter.” Vikash turned toward me, made extended eye contact for the first time since I entered his apartment and smiled. He asked, “Do we really get to go to the putting green?” I responded, “I’m ready when you are as long as you are OK being my babysitter.” We borrowed two putters from the front desk and walked toward the putting green. On our way to the door Vikash said, “Let’s sit on that bench. My legs hurt.” We discussed his experiences with gaining weight and he said, “Maybe I just keep eating and hoping I’ll die. It’s all just a lot. I don’t understand a lot of what’s going on.” We continued to sit on the bench in the lobby and Vikash shared, “Everyone is dead. And the people who are alive want to control my life. They think they know better than me what I need. They’re wrong. They always have been. I don’t even think they really know me. I know they love me they’ve always protected me. I’m just so frustrated. Never never did I think this would be my life.” With the sharing of this information, I began constructing a history of losses (see Table 8.1). Vikash explained the dynamic of his strong and secure relationship with his mom. She died in 2013. He was the first born and often his “dad traveled for business and so it was just mom and me until my brother was born when I was 6. I really liked that time with my mom. She’d always protect me when my dad was just so mean. Things kept changing as I got more brothers and sisters. Ravi always protected me, especially when dad would yell and throw me around. Sometimes Ravi would say he did it when he didn’t. Dad wasn’t so mean to him. Not like he was to me.” Vikash also had a strong relationship with Sumangala, who is the mother of Rupinda, who is Ravi’s wife. She died in 2016. Prior to moving to the independent living community, he had a group of friends, enjoyed drawing using charcoal on paper, volunteered at a local library, golfed regularly, and coached junior high school kids in golf at a local golf course. These activities are just a few of his protective factors (e.g., meaningful relationships, purposeful activities, physical activities). Now let’s learn a bit about Vikash’s goals and motivations.

Loss type

Independence Vehicle accident FTD diagnosis Golfing Friends Brain tumor Childhood abuse Sibling death

Loss #

1 2 3 4 5 6 7 8

Table 8.1  Loss history

Months 1 10 10 10 10 10 10 dnd 8 9.714286 3 8 10 10 8 7 8 9 8 7.875

6 7 10 10 8 6 6 8 6 7.625

12 7 10 10 7 6 6 7 5 7.25

15 10 10 10 8 10 8 10 8 9.25

18 5 8 7 6 5 5 6 5 5.875

24 4 8 7 6 5 5 6 4 5.625

27 4 7 6 5 3 4 5 4 4.75

30 3 7 3 2 3 4 5 3 3.75

36 2 6 3 0 0 3 1 1 2

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Goals and Motivations

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Goals and Motivations In this section, we will highlight some of Vikash self-generated goals and his motivations for change, within the context of a linear timeline of specific retrospective data analysis points. Each individual is different, and it took time to build trust and a working relationship with Vikash. Sharing information from the single intake session would not fully represent his initial overall goals and motivations. Therefore, I will layout the first month we worked together in order to provide a fuller presentation of Vikash’s emotional state at the beginning of our work together. I found it helpful to look at smaller windows into the work he was doing. Therefore, we will look at shorter intervals in the beginning, up until year 2, when we will then look at a 1-year time span and retrospectively analyze data at 3 years. Specifically, we will review retrospective data gathered from the following months after the intake: 3, 6, 12, 15, 18, 24, and 36. Unique to the work Vikash did, at the 15-month mark he experienced major changes in his environment due to the global pandemic of COVID-19. Due to state regulations, we were not permitted to work together in-person and none of his family members were able to visit. Initially, Vikash interpreted this change as further punishment for his behavior earlier in life “or maybe the judge isn’t making me go to jail and wear an outfit and is making me be in jail here. This is jail. Life in solitary confinement. No parole.” We will return to a deeper exploration of his understandings and processes of change regarding COVID-19 in below sections. During the intake session, Vikash initially presented with cognitive disorientation and diminished proprioception (awareness of body movements in relation to objects in the environment). Overall, it seemed he was experiencing systemic overload, or a hyperaroused sympathetic nervous system. In other words, his body seemed to be flooded with messages that he was under attack, was going to be attacked again, and needed to be ready to react. This hypothesis was supported by evidenced of incongruence between stated motivational orientation and physical reality. For example, Vikash’s comment about the vehicle in the parking lot, he later said, one of my goals is to “get my driver’s license back.” As we will see throughout his work, congruence between stated motivations and living situations continued to strengthen as he regulated his internal systems and primed his parasympathetic nervous system. There are several ways he accomplished this and we will discuss this in a below section. A few of his other stated goals within the first month revolved around his physical fitness, identity and agency. He commented on feeling controlled by his family his whole life and then wondered if maybe he also “allowed them to just do everything for me. So, maybe, it’s possible, I could just do a little more for myself. Maybe then they’ll stop controlling me.” Vikash’s world very rapidly became quite small. And yet, near the middle of the first month of working together, Vikash mentioned really seeing himself in the gym and being more active than he has been in the recent past. He also commented, “I weigh too much and I don’t think it’s good. I really don’t like how I look.”

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Three months later, Vikash said, “I just hate feeling like such a slob.” His motivation continued to increase with respect to his previously stated goals. He shared, regarding his progress, “I really will try to keep rubbing out my legs. I’m also doing the leg activities and I feel a difference.” Three months later, 6 months into beginning his journey of self-exploration, Vikash stated, “I don’t want to keep gaining weight like I did before. I wish this were not so hard.” Regarding his motivations on independence and agency, Vikash stated “I want to be able to do more it’s just sometimes I feel trapped…and then I get really angry. Why did the gods curse me?” On another occasion, Vikash mentioned “I want this to feel easier. Something. Just one thing. It’s all so taxing all of the time. The gods don’t want me to have an easy life.” Vikash continued to make connections between his actions, the impact of his actions, and the changeability of his actions. For example, the connection between food and activity was realized when, at the beginning of a session when we were reviewing what worked for him between last session and the present moment, he said, “I tried to eat less. Food is just so good. Then I eat too much and I feel horrible. So maybe the leg movements I did really did help make me feel a little better. Maybe.” Vikash summed up his present goals: “I guess there are four. Lose weight, eat less, be more active, and not get so angry.” With regard to his continued practice of increasing the parameters of his world, he said, “There’s a putting challenge coming up and I need to practice for it if I want to get better. Especially if I want to win. Yep, then I really need to practice. So I set this up in here. Watch.” Vikash walked to his closet, retrieved his putter and an indoor golf putting cup and his ball. He set up the hole in one contraption and walked a distance from it and set the ball down and tuned into his body and putting stance. Switching his eye gaze between the hole and the ball, he swung the putter backwards, away from the ball, 3 times and on the fourth made contact with the ball and gently launched it down the carpet and into the hole. He looked up with a big smile and said, “Every time I get one in I try to remind myself that not everything is hard…even when it feels like it is. And…maybe, just maybe, I do have control of things because I controlled the ball to get it in the cup.” One year into working together, to meet Vikash where he was, we shifted the language of goal to wish due to Vikash sharing, “I don’t have goals anymore. I just have a lot of wishes. And when I think about the goals I used to have it just makes me sad. I can’t do anything about my life. I wish just one thing made sense.” A few sessions later, Vikash remarked, “I wish I could figure out how to live now. It’s never going to be like it was before.” The before he was referring to was two-fold: receiving a diagnosis of frontotemporal dementia and “the accident. It’s all just weird. Things just don’t make sense. And it really all happened so fast.” During this time, there was a pivotal moment for Vikash where he seemed to shift his attention away from “before” to “now.” His motivation changed from −2 to 6 (self-report on a scale from 1 to 10 where 1 is not motivated and 10 is very motivated). He also shared his social needs by identifying, “I’d like to make friends, I just don’t know how. And maybe no one will want to be friends with me. I don’t know.” More specifically regarding his motivation, he mentioned “I am motivated to not feel so damn sad.” When we were exploring what has changed for him, he stated, “Something that hasn’t changed is I am so sick and tired of everyone doing everything for me. I guess

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maybe, just maybe, it’s a little different that I try to get out of my apartment more and just try to live a little better and just try to enjoy my life. Maybe going to the gym yesterday was alright. I guess I kind of enjoyed it.” As we will learn in a below section on physical activity, one activity we incorporated was playing music. Vikash mentioned “OK, now I have a goal and not a wish…to learn the lyrics to Band on the Run.” Fifteen months into working together, Vikash’s goals and motivations shifted in part because of COVID-19 and also because of Vikash’s insight into his changing environment and the emotional states of those around him. For example, regarding his goals he stated, “I think I just want to keep being nice, maybe even extra nice because everyone seems so stressed.” Or, reflecting on the work he has been doing, he commented, “I’ve just been enjoying every thing. I think maybe I’m figuring out how to live this life…except now everyone seems so hyper.” He had several goals at this time: “Just try to stay calm and keep stretching and doing all the exercises I do.” He mentioned noticing a change in his level of anger by stating, “I don't feel so frustrated and many people seem to be feeling agitated and so maybe my purpose is to be calm for other people.” He continued in another session by stating, “Maybe one of my goals is to be OK with all of these changes. The gods are giving me a test. I’ve done all this work and my life is OK. And sort of enjoyable.” During this time, our work shifted from in-person to over the telephone and Vikash remarked, “I like trying to do exercises over the phone because I get to use my imagination.” Another time he shared, “This is different doing exercises like this. It’s really kind of OK. Maybe I even feel a little stronger because it’s all me who is doing it.” Toward the end of this critical period, 15  months into self-­ exploration, Vikash remarked, “Sure, there have been other times in my life where I’ve learned things. There is so much uncertainty now. Just so much keeps changing.” Regarding his goals, Vikash shared, “Just focus on staying alive and I hope more people don’t die.” Eighteen months into our collaborative efforts, Vikash’s goals and motivations were focused on “just trying to stay healthy with all the various parts of me.” There was a shift away from the specific to the more global. He mentioned, “The exercises were a mix of easy and hard and I think I’d like to do them again maybe later…after dinner. I’ll try by myself. I just keep telling myself that it’s a good day. And maybe just saying this makes a little difference. Maybe. Also, I think I’m getting closer to my blood sugar being lower. And I’ve done it before so I just need to stay on top of it.” Two years into our work, Vikash expressed an awareness of systemic disequilibrium. He indicated that one of his goals is to “Feel a little more settled. Here and here,” motioning to inside the body and in his apartment. During this time he moved a third time, since we began collaborating. He shared “I want to remember that I’ve already moved…that’ll help me feel better.” His motivations involved making connections between multiple components of well-being by stating, “I just want to feel OK. Sometimes I don’t know my place.” We explored the meaning of place and for Vikash it represented feeling confident as well as cognitively understanding his

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living environment. For example, how to navigate from the large multipurpose room where many people gathered to his apartment. Three years into working together, Vikash not only felt a sense of contribution, of making a difference and knowing his place, he also was motivated to interact not only outside of his apartment, outside of the memory care center, and he also strengthened feeling OK in town. One of Vikash’s stated goals was “Go to a jewelry store and fix this band so it doesn’t spin around my wrist.” His goals and motivations span across dimensions of well-being, by stating, “It sure could be fun to throw the football for me and for other people who live here.” He also had two individual goals, “Try throwing underhand spiral perfectly” and “I’d really like to feel less frustrated. Maybe I’ll always feel frustrated. I can change what I do with this feeling. I don’t have to throw my phone and break things like I used to.” We just reviewed some of Vikash’s goals and motivations and different time intervals. With this window into understanding his initial stated goals and motivations, now we can move into the next section where we will learn about the process of change Vikash experienced with the previously discussed goals and motivations. In this next section, we will also discuss interventions and the self-discoveries Vikash made. Just as with this section, in the next sections we will look at the same time frames.

Explorations, Interventions, and Discoveries Let’s explore some of the ways that Vikash engaged in self-exploration and the process of change over the course of us working together for more than 3 years. As previously discussed, we will look at an average of what was going on around the time of a given time frame. For example, rather than look at a single time point on one specific day, it is important to maintain flexibility in analysis of data collected, looking at the week prior and the week following a specific date. In other words, just as was discussed with data collected in the Intake session and laid out in the above section, Goals and Motivations, it is more representative to look at what was going on in the time surrounding that day. We will proceed with a similar pattern of reporting in this section. As we saw in the previous section, Vikash had some real concrete goals regarding his overall well-being: physical and emotional health, as well as strengthening agency. He quickly not only saw himself doing activities in his apartment, he also saw a way to make his world a little bit bigger by stating, “I really do want to get down to the gym. That was fun with you. I just don’t know if it would be the same if you’re not there. But maybe it could make a difference if you know what I mean. I wouldn’t have to be trapped in here and I can do whatever I want when I go to the gym.” At the 3-month mark, Vikash continued to build on his confidence and agency by sharing, “I do think what I have to say is important. I’ve made a difference before and so maybe I can again in some way.” There are several ideas Vikash had on ways

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he can make a difference. One way of making a difference was expressed by his idea of “writing a letter of concern to management regarding the shutting of doors and how alarming and unsettling it can feel when people close their doors. I don’t think it’s just me. It’s so startling. I jump every time. Now, there are all old people here so maybe they can’t hear it, but I don’t think that is entirely accurate. I think people hear it, it’s unsettling and it needs to stop.” Vikash followed through with the completion of the writing of the letter and delivered it to the front desk to be delivered to a manager. One followed up and asked his opinion and they came up with Vikash writing a notice that would be typed up by someone and placed on people’s doors. You can also refer Fig. 8.1 to see the pace of physical activity Vikash was engaged in at the 3-month mark. At the 6-month mark, Vikash was beginning to make connections between food eaten and the physical activity in which he was engaging. For example, we noted, using a fitness tracker on a mobile device, that he burned 44 calories on a walk. For dinner the day prior, he consumed an egg salad sandwich and we estimated this is the caloric equivalent of walking the route 8 and 1/3 times. A change Vikash made was to opt for no bacon on the sandwich. Vikash said, “It’s very good I didn’t eat bacon because there is no way. There is no way I can walk that that many times. I would die.” I tossed out a perspective to ponder: Will eating an egg salad sandwich kill you? Vikash said, “OK, I get it. Really I do. I don’t think like that though. But, maybe, just maybe, just how I’ve made other changes, I can change this too. I think it’s good. Well, sure it is because like with all my thoughts about being sued. I’ve learned how to mostly, kind of mostly, stop doing that. The breathing helps.” Vikash is referring to breath practices and physical postures he uses to interrupt the ruminating thoughts and subsequent feelings associated with losses. We will explore more on breath practices in the Outcomes section below. Despite his expressed frustrations with changing dependence, Vikash continued to focus on his physical health and continued exploring activities on his own. His comfort with navigating to the gym by himself increased by him stating “Once I’m here [gym] it’s always fun, it’s just such a long confusing walk to get here. I can do it.” Another way he exerted control or establishing his independence is with channel selection on the television. He did a little experiment to see if what he watched on

Fig. 8.1  Three-month physical check-in

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TV made a difference in how calm he felt. He realized it did and so “I change the station from a cop show to Soundscapes and feel calmer fast. Real fast.” Vikash is consistent in using positive self-talk at times when he catches himself being self-judgmental or tough on himself. He always continues to develop his agency. Toward the end of our session, a woman from the community where he lives walked in his apartment and said, “OK, Vikash it’s shower time.” She turned toward me and asked, “How much longer will you two be working together?” I responded, “I don’t know, ask Vikash. This is his time.” Vikash said, “Oh, you’re getting ready to leave, you just said we’re wrapping up. And then I’ll just be here with her. I don’t want to. Please make her stop.” She said, “I know. You hate to shower. Take 5 minutes with her and then come on in the bathroom.” She walked away and he said, “I hate this. This is like being in a car wash with feelings. I hate it. I hate it. She touches me all over. It’s gross. It just reminds me that I can’t do one damn thing for myself. I’m not even attracted to her but I have to. I have to.” I asked him, “Am I hearing you say you’re OK with showering, you just want to shower by yourself?” He said, “Yes, and no one will listen. I don’t want to hurt her feelings.” We explored ways he can exert himself and feel a sense of control. He came up with “deciding what I order in the dining room instead of just eating what they bring and maybe, maybe if you’re there I can ask her to not touch me.” We walked toward the bathroom together and Vikash proposed showering by himself. She was receptive and Vikash turned to me and with a smile said, “It worked. And, I think I still have time to put by dinner order in.” Another way we collaborated on developing and strengthening agency is when I knocked on Vikash’s door one day and he said, “Come on in.” I opened the door and said, “Great to see you today, Vikash. How is your world?” Vikash picked up his cup, shook it and said, “Ice and water go get it.” I said, “Hey that’s a really great idea. Let’s go together.” When in the kitchen I asked, “Much like your cup was dry when I walked in, does your life feel dry?” Vikash said, “Yes. How did you get that? Having everyone do everything for me and on different schedules sucks the life out of you. I never wanted to move in here. But now I’m paying for it so I might as well let people do things for me.” At the same time, Vikash remarked, “I really do like being able to do more for myself.” One way Vikash is increasing his independence is when we were walking toward the door of his apartment to head for the gym, he said, “Let’s go faster.” He ran out the door and down the hall to the gym. While in the gym, Vikash self-selected teal 5.5 lb-weighted ball. We tossed this twice back and forth and Vikash said, “I think this is too heavy.” I said, “Way to try it out. Should we look for a different one?” Vikash selected another and then after tossing back and forth said, “That’s a little better.” I said, “OK. How many times should we toss it?” He said, “Oh, how about 40 times.” I said, “Great. Let’s go.” After the second toss, Vikash was smiling and counting every other ball exchange between us. He reached 40 and then we moved to different equipment to work other muscle groups. Vikash enjoys tossing a small football back and forth. He feels a sense of accomplishment when he catches and throws the ball. At one point he threw the ball and it knocked over two snowman decorations. He screamed at himself and called himself

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a “fucking idiot.” It was a wonderful opportunity to explore the benefit of his practice of self-talk. Previously, I threw the ball at him and threw it short and the ball rolled behind the chair. I asked if Vikash thought I was a fucking idiot because I did not hear him say it out loud. He said, “Of course not. You’re trying and sometimes you miss.” I asked, “How is what you did different. Because clearly it’s different if you think you’re an idiot and I am not.” He said, “It’s just better if I say it first before anyone else does.” And I added, “because then maybe it’s not so hurtful if you claim to be an idiot before someone calls you this.” He said, “You got it girl.” We chatted about his current environment and if anyone calls him an idiot now. He shared he just remembered feeling this way and being called an idiot when he was a child. We explored the benefit of self-congratulating when he catches a ball or does something else successful in his environment to feel a contrast with negative self-talk. In the previous section, we discussed Vikash’s practice with putting a golf ball and his self-initiation to practice in his apartment. He continues to increase his engagement with his environment inside and outside his apartment. Although Vikash expressed hesitation with attending the putting challenge, stating, “I probably won’t be that good. I’ll miss and everyone will laugh at me.” I said, “OK. That’s one possibility. Is there another possibility of how people might respond?” He said, “Maybe they’d cheer for me. But I don’t even know where the event is.” I asked, “How could we find out that information?” He said, “We could ask at the front desk and then walk the halls. I really do like walking in the halls. It’s good to get exercise and it’s also a way to meet people.” Fifteen months into working together, Vikash’s explorations shifted and were shaped by COVID-19 regulations and health and safety measures implemented in his living community. He exclaimed, “They won’t let us out or anything. I’m trying to be OK with it because I know I have to be. I just took a shower and that felt pretty good. I mean, I don’t like it when I’m doing it but at least it’s better than before. Now she just stands there. At least she doesn’t touch me though.” Vikash continues to express enthusiasm for engaging in yoga postures, commenting, “I really enjoy doing activities with you and I’ve been stretching more when you’re not here too.” He also commented about how “helpful breathing practices are right now. I just wonder when it will be back to normal. I think people have gone mad telling people they have to stay home. But, people are dying. More and more. I just don’t know about all of this. I’m confused why the gods are doing this. I haven’t been that bad of a person. This is a curse.” He also commented, “I get it. I am being punished, that’s why you can’t come here. I just really cannot think of a good reason why the gods are doing this to me.” In addition to yoga postures and breath practices, Vikash also expressed interest in “knowing more about my instruments. I used to play the trumpet and the guitar and the piano and so maybe I could do something with all these instruments in my apartment.” As was previously mentioned, during this time our work took place over the telephone. Vikash said, “I’m getting my xylophone. Are you going to play your guitar or the little guitar? I forgot the name. The little Hawaiian guitar. Oh ya, the ukulele. Which one will you play?” I picked up my guitar and we made music together.

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At 18  months, Vikash seemed to be feeling stable and balanced. This is evidenced in his style of music playing. His internal feelings are reflected in his method for playing and the arrangement of tones that he produces on the xylophone. We discussed impact of physical activity and food choices on his goal of decreasing his blood sugar level. He mentioned, “I’m really just thinking about called Round Table pizza.” We explored the impact of eating pizza on his blood sugar. He mentioned, “I don’t eat the whole thing anymore. 2 or 3 slices but closer to 2. And I know the crust is really not good.” We also explored the benefit of eating a salad along with the pizza. He said, “I could maybe try that.” In the middle of us working together, his lunch was delivered and he said, “Oh, I guess no more pizza for me.” We tossed out the idea that maybe he engages in physical activity sometime between lunch and dinner and then have pizza for dinner as long as he eats salad after and takes his blood sugar before. “Today it was 209,” Vikash said, “That’s still too high.” Vikash is continuing to make connections between what his number is and monitoring how he feels in his body and the food choices he makes as a result of his blood glucose level. “I’m really trying to make sure my numbers stay low – not like 400 or 300 or anything. The other day I think it was 174 or 176. That’s pretty OK. I can do better.” We engaged in muscular strength exercises and range of motion, for example, leg extension, leg curl, biceps, triceps extensions, back extension, and abdominal contraction. Vikash mentioned he could call later when they read his blood sugar before dinner. He said, “I don’t know your number though.” I said, “Yes. You absolutely do.” After six second self-initiated focus on inhale, Vikash was able to recall my full telephone number. He called about 30 minutes later and LM: “I’m just calling to tell you my blood sugar reading and it was 148. That’s pretty good.” At the 2-year time point of us working together, Vikash moved to a locked memory care residential space. He mentioned, “I like it here. The food is good and people are friendly, I just know I’m moving soon, so maybe I just don’t want to get too attached or something. Things are starting to make a little more sense. I just really don’t get out much but maybe I could do some exercises in the chair like we did last time. After we did exercises last time then I did them by myself and they weren’t so hard.” On another occasion he remarked, “The ones you made me do in the parking lot those were hard. I did maybe sleep better on that day kinda sorta. Maybe we can try that again.” Vikash continues to express interest in strengthening his agency and we called the front office together and made an appointment for tomorrow at 9:30. Vikash remarked, “I liked calling and making my own appointment because so many appointments are just made for me. Everyone has an idea of how I should live or what I should be doing.” When Vikash moved to the memory care space, COVID-19 restrictions were in place that made it such that some of our sessions took place in-person, with the use of a walkie-talkie. He was inside and I was outside, with glass in between us. He remarked on the telephone, “Maybe things are starting to change with you coming here tomorrow and we can see each other, but it’s still not the same as before on the balcony because we’ll have to use a walkie-talkie.” Vikash expressed feeling like he was just waiting. “I really wish I could feel more settled. Except, I really don’t think this is ever going to change. I’m going to be locked in here forever.”

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Vikash shared how living in a big open space “is very different for me. Everyone is always just stopping by and just in here all of the time. I feel like I’m constantly being watched…only to be corrected for doing something wrong…or not the way someone thinks I should do something.” The two emotions Vikash expressed feeling were anger and anxious. To transform these feelings and integrate them into the body more comfortably, I introduced a breathing practice intended to nourish the body by increasing the supply of oxygen. It is suggested this particular breath practice (nadi shodhana in Sanskrit) encourages harmony in the body and prepares the nervous system to be responsive rather than reactive (Saraswati, 1969). Once presenting as present and coherent, we then explored what is going on in Vikash’s world. He expressed “feeling very very very frustrated” and not always knowing what to do with it. He continued, “Not you. You are never frustrated.” I shared with him that I feel very frustrated sometimes. He asked, “Really? I’ve never seen it. What do you do when you feel frustrated?” I shared, “Sometimes physical activity is helpful, like going for a run or pushups or I imagine pushing something heavy away from me like a box.” He commented, “Ya, heavy like a box with my frustrations.” We both chuckled. He said, “Yay, that box is very heavy.” I asked, “Should we try pushing it away?” He engaged in this physical activity and commented, “it kinda sorta felt good. It didn’t hurt.” I offered, “We could also engage some different muscles by extending our arms and pulling toward us what we do want in our life.” He asked, “like this” motioning by taking his extended arms, clasping something and pulling toward his body. He said, “Ya, I’m pulling a box of blue skies and peace.” I responded, “This is great. And this is something you can do anytime. You are using your body and awareness to feel more comfortable. Way to go.” He commented, “I also like how I feel when I breath like that. It’s funny.” According to yogic science, this breath practice should not be practiced after meals and should be practiced after warming the muscles in the body (Saraswati, 1969). We co-­developed a plan where when he feels frustrated, he would push and pull the box and then practice the breathing. “I could also try those exercises with all the moves…if I remember when I’m so frustrated that it really does feel pretty good to move like that.” Vikash was referencing a seated version of Sun Salutations (Surya Namaskara) – a 12 postural series originally developed to begin from a standing position – I displayed on a piece of paper using stick figures to depict a seated version (see Appendix in this chapter). Three years after working together, Vikash maintained a commitment to his overall health. One of his goals became to see how many times we could exchange a ball within 1  minute, by throwing it at each other at a distance of 13  feet. He remarked “I think we can keep trying to do better. Maybe even 40 one time. It could be possible.” He also moved his feet under his blanket and said, “See, I’m doing good. I do it several times a day.” He was referencing foot activities to increase blood flow and decrease discomfort in bottoms of feet. Vikash said, “Ya this is real good. My feet, ankles and calves all feel a little less tight. Maybe they even don’t hurt as much.” Vikash continued to combine his interests and goals. For example, playing sports and socializing. Vikash remarked, “I’m really trying to not feel so frustrated all the

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time. I think I’m really doing pretty good. I keep doing the exercises, my feet keep hurting less, and now I just wonder if maybe someone will want to play catch here. I just don’t know because they haven’t wanted to so far. I have my ball.” I asked if he asked anyone if they wanted to play catch. He said, “No, they’ll probably say no, but I could ask…maybe they’ll say yes.” Vikash organized a gathering in the courtyard and invited everyone out there to participate. One person said, “I’m in a wheelchair, I can’t run and catch.” Vikash said, “Open your arms. Ready? I’m going to throw the ball to you underhand.” The person caught it and a large smile grew across her face. Vikash said, “See you did it. Now you can throw it to anyone…or put it on the ground and someone will pick it up…or you can keep it. I have another one.”

Desired Meeting Locations In our time together, Vikash lived in two different apartments within one living community and another apartment in a different living community. Each of the moves was predicated by management at the living community, indicating he needed additional supportive services. He transitioned from independent living to assisted living to locked memory care. Our sessions were not limited to the confines of his apartment in each of his living environments, they also took place in common areas, for example, the halls, a courtyard, the gym (all located where he lived), as well as nearby parks, in a vehicle, and in town. The element of nature was either the very space we were in, or when meeting indoors, we were orientated in such a way to be facing nature. In all living environments, Vikash’s privacy became less and less. He often would express, “Who the hell just walks in someone’s front door without at least knocking. If you just walk down the street, opening doors, you get arrested for that. Not here.” Regarding desired meeting locations, we will discuss ethical areas of consideration in a future chapter. For now, let’s explore some of the outcomes of the work Vikash did.

Overall Outcomes Vikash’s outcomes are multidimensional and overlapping. At the 3-year mark, Vikash’s contextualized cognitive functioning was increased from previously. For example, Vikash noticed the light on in his closet after a person brought pants in and hung them up. Vikash said, “People just walk in and do whatever they damn well please. And don’t even say anything.” Together Vikash and I walked to his entry way and figured out which light switch corresponds with the closet, through a process of trial and error completed by Vikash, with no prompting. “Now I can turn the light off every time they leave it on,” he said, followed by noting to himself, “this switch is for the closet light.” Vikash made multiple attempts to interact with people who came into his room (Person 1: hung pants/later returned to take hangers/later

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returned to ask if a shirt is his – Person 2: ask if Vikash needed to use the bathroom). He presented as engaged and aware of minor details that compared with previous times he presented as unaware. Vikash showed evidence of four task switching (TV channel [SC  – “I wonder what that stands for?”  – through problem solving and deductive reasoning, Vikash identified Sports Center], on the television, people were commenting about the golf course in Florida [Vikash commented on FL weather], a resident walked in and Vikash noticed her walking). In 1 minute, we were able to exchange the ball 37 times (+3 times from last time – all completed w/ underhand spiral). Two-ball simultaneous catch (while Vikash held and tossed green ball, I held and tossed brown ball – balls passed mid-air and Vikash successfully caught brown ball tossed to him and threw green ball to target [my hands]). Presence of memory of continuity of conversation (picking up from several days ago): Vikash mentioned receiving “another fall photo sorta like the trees picture but different.” As we were wrapping up our session, Vikash said, “I’ll keep moving my feet. They’re really feeling pretty good. Also, I think my dad is doing pretty good. Yep. He has many things going on. One thing he has going on is he says he’s so sorry. He never meant to hurt me. I told him I forgive him.” Vikash’s father was dead at the time he shared this, although he commented previously that his father continued to hurt him. He was referring to one of the ways a history of trauma can have repeated detrimental effects. Vikash’s comment “I forgive him,” speaks volumes about the space he is creating in his body that previously was occupied by the hurt from his father’s treatment. Physically, Vikash continued to make connections between the drudgery of physical activity and the changes he noticed. “Even though I’m really hot and sweating, I think maybe I have more energy.” At another point during this 3-year mark, Vikash reminisced, “A long long long time ago I couldn’t walk to the door to outside. We sat on a bench.” Vikash was referencing the first day we connected when we borrowed putters from the front desk and on our way to the door to exit to the putting green outside, Vikash suggested we sit on a bench. We remained on the bench for much of the session, before returning putters and walking upstairs to his apartment. Vikash self-selected a wide variety of physical activities: strength, stationary bike, range of motion, going to the gym, walking (halls and outdoors), using resistance bands in his apartment, playing a musical instrument (xylophone, trumpet, guitar, piano). He also learned the benefits of incorporating grounding work in his day-to-day life. He recognized these practices as self-soothing, ranging from acupressure to breathing techniques, and yoga postures to screaming. From our initial intake session, Vikash noticed the changing nature of his physical output, emotional well-being, and relationships. He once remarked, “It’s just so hard for me to move. I feel so unbalanced and uncoordinated. It wasn’t always like this for me.” Later he remarked, “I have been enjoying doing the leg movements. I’ve been walking more, and I think drinking more water is kind of helpful. Maybe.” In addition to all this work he was doing, which we could say is a developing of protective factors, he also maintained “I’m just so confused why the gods are doing this.”

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Case Summary On the gray line in Fig. 8.2, we see an average of his responses to the question (multiplied by 10 to fit with data on blue line). On a scale from 1 to 10, how much do you believe you can accomplish your goals (SE)? A related question is measuring his skill set and application of his experiences to support him in achieving his goals (PM), data depicted on the orange line. On a scale from 1 to 10, how much do your past experiences support you in accomplishing your current goals? These plotting of data, averages of self-report numbers, appear on the same graph as the physical output measured in average mile per minute pace. When the monthly average for pace increased, his SE and PM values dipped. As we can see in the above bar graph (Fig. 8.3), in the beginning of our work together, Vikash’s distance remained about the same and the time he took to complete that distance decreased. His average pace for a distance of one mile shifted from 67.1 minutes to 41.4 minutes within the first year of his focusing on multiple aspects of his health and well-being. He also shifted his physical focus from walking to other activities, during the period of July 2020 to April 2021. As was previously noted, he engaged in activities such as playing music, learning lyrics, making music, and writing lyrics. If we lay data from repeated measurement of BGQ over data from physical output (specifically for the activity of walking – during which time we were also engaged in talk explorations), we will see similar mirrored changes (Shear et al., 2006; refer Fig. 8.4). In other words, decreased time of physical output and grief metabolization could potentially be concurrent processes. It is important to keep in mind that during this time of self-exploration, Vikash also experienced other contributing factors that add other layers to the reported outcomes. As examples, he moved residential locations 3 times, experienced physical falls, a hip replacement, medication changes, and COVID-19. One constant throughout Vikash’s work was a focus on establishing a secure relationship within his own body. In the beginning of our work together, he

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commented, “I have a lot of things wrong with me. I sometimes wonder if that’ll change.” His body awareness increased in multiple ways. He shifted his relationship with food, and instead of thinking of it as a friend and desiring more, he learned the nutritional value of food and started making choices of what to eat based on the amount of physical activity he did in a day. As these internal connections strengthened, so too did his outward security. One outcome of increased internal connections was a shift in confidence and agency. As a result, his socializing efforts increased. He organized a putting contest, attended group exercise classes,

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participated in a play, invited a friend to his apartment, and asked someone to go to a social event. He also played the piano for a 30-minute set at an open house event that took place at one of the communities where he lived. Now, we can potentially summarize another key finding to the application of Dementia Grief Therapy (DGT) principles and that is a shift in cognitive processes. One year into working together, Vikash shared feeling ashamed that he cannot control his bladder. “This is just another way I’m being cursed. I’m totally and completely damaged.” Vikash seemed highly agitated. We discussed acupressure points on the lower legs and feet that he can use for bladder health. I shared with him at the end of our session that I would give him a call a bit later today. We met at 3:36 p.m. on this afternoon and I called him at 6:39 that evening (a little more than 3 hours later). While on the phone we talked about what he had for dinner. He said, “I don’t remember.” I asked, “Hey Vikash, I was wondering if you want to help me with the project I’m working on.” He said, “The one where you went downtown to your office and something about the brain?” I said, “Yes, that one.” This was in reference to a comment I made while we were together in-person earlier in the day. On the phone, we talked a bit about yogic breath practices and Vikash said, “OK, I’ll try that today and tomorrow and we’ll see you tomorrow afternoon. I’ll keep rubbing my legs and feet in those placed you showed me.” Even with this evidence of capacity to learn new information, access it, retrieve it at a later time and apply it to his own health, Vikash said, “I know I did things for myself before, but I can’t anymore. Everyone has to do everything for me. Everything.” At the same time, Vikash maintained a belief that “I’ve learned other things, but it’s so hard for me. Things don’t come easy for me like they do for other people. They never have. And well, maybe I could do more for myself.”

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Explain the role of grief processing in Vikash’s life. 2. Methods utilized by Vikash to increase self-efficacy. 3. Describe work Vikash did on integrating past losses into current self-narrative.

Further Inquiry In what ways can Vikash’s conceptions of religion be used as motivating and protective factors in the work he is doing? What other validated measures might be useful when tracking the dual shifts in physical activity and grief integration?

Appendix

Appendix

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Case Coneptualization: Vikash Areas to explore 1. Comprehensive list of problems

2. Nature of problem 3. Identify patterns in problem

Data collected “Nothing is working for me right now.” “The best part of my life right now is I have this big screen TV so I can watch golf…and my brothers. I know they really care.” “The worst part of my life is everyone is dead. Even those people I didn’t even know.” Protective factors: Cancer survivor, brain tumor removed @ age 55, baseball player in high school, intelligent, secure relationship with Sumangala, positive self-talk. “My stress is a 20 if the scale is 1–10. I was fine on my own and then everything changed. I should have never gone to the store. If I hadn’t gone then I wouldn’t be in this shithole.” Medical records: Diabetes, two past brain surgeries, broken femur, fractured collar bone, 2xdislocated R shoulder, 55 # gain in past 6 months, “melancholic temperament.” Emotional Hx: “I never cry. Crying is for crybabies. I’m a man.” Cognitive Hx: MMSE = 20, frontotemporal dementia. Family Hx: Dad died 2 weeks after triple bypass surgery, mom died from breast cancer, brother died from complications with diabetes, sister died from breast cancer, brother died in car accident, dad physically and verbally abusive, close with mom of sister-in-law. Predisposing: Hx of SIB, Hx of alcohol use, Hx of gambling. Precipitating: Family dynamics “protective of brother,” Hx of alcohol abuse (dad, self, and three siblings). Perpetuating: Attachment dimensions with siblings. Family noticed changes in behavior in 2017. Vehicle accident. Current Dx reinforces ideas of never making own decisions. Administer walking assessment (distance and pace) – BGQ Family protects Vikash, Hx of making excuses for behavior.

Reference Saraswati, S. S. (1969). Asana Pranayama Mudra Bandha. Yoga Publications Trust, Munger, Bihar, India. Shear, K. M., Jackson, C. T., Essock, S. M., Donahue, S. A., & Felton, C. J. (2006). Screening for complicated grief among project liberty service recipients 18 months after September 11, 2001. Psychiatric Services, 2006(57), 1291–1297.

Chapter 9

Case Composite: Grace

Key Points • The roles grief may play in understanding dementia health. • Assigning meaning to relationships based on attachment dimensions. • Perceived losses can be reshaped as protective factors.

In the sections that follow, we will get to know Grace and the self-exploration she was engaged in for 3 years. We will first be introduced to Grace and how she and I came to cross paths. Second, we will discuss a basic overview of the intake process including an understanding of the history of four areas: diagnoses, losses, relationships, and protective factors. We will see woven into this chapter an acknowledgment of a history of trauma. For example, in some instances, trauma is a protective factor and other times it impacts current and future relationships. The third section focuses on goals and motivations, which helps frame the fourth section where we will cover explorations, interventions, and discoveries. Here, we will discuss the desired meeting location and ethical considerations, physical activity, nature, and dimensions of well-being. In the fifth section we will explore some overall outcomes from the extensive work Grace did in the following areas: physical, social, cognitive, and psychological. Included in this section will be thematic discoveries made by Grace. Lastly, I will summarize this case composite presentation.

Background Grace invited me on her journey of self-exploration beginning when she was age 98 until her death at age 101. Grace’s friend, Claire, was named as a legal agent responsible for making decisions on Grace’s behalf (power of attorney). Claire contacted me and said, “I got a call from where she lives and they said she is acting completely © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_9

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out of realty. The staff psychiatrist wants to admit her to a geriatric psyche ward. I said no and then come to find out she’s been prescribed Haldol, 20 mg, 3 times a day.” Claire continued to express concern stating, “Since Mark’s death (Grace’s husband), Grace has not been interested in leaving the apartment, her appetite changed, and she has another UTI.” I shared with Claire that I appreciate her concern and I would go to Grace’s apartment and if she too expressed concern, then we could conduct an intake session and discuss next steps. As a brief history, her husband had not been feeling well and was lying in bed. It was lunch time, and they typically went to the dining room, down the hall and around the corner together. On this particular day, he said, “Go enjoy lunch. Enjoy a meal and time with our friends.” When she returned to their apartment after lunch, he was not in bed. People who work at the long-term care community (LTCC) where Grace lives, in response to her asking where he is, said some variation of, “He’s just fine, don’t you worry,” or “He’s in a better place,” or “He’s just down the hall.” They continued to repeat these sentiments for 2  weeks. During this time, Grace shared with her friend Claire, “I’m losing my mind. I just want to see my husband and know he’s OK. This is one of those times I really have to trust God and know he’s taking care of Mark. And me too. He has always taken care of me.” Referenced in the appendix of this chapter, you can see the six-step process of case conceptualization. In the following section we will begin at the beginning, with the intake session.

Intake In adopting a biopsychosocial spiritual framework, it became readily apparent during our intake session that Grace’s human interaction was severely limited since the death of her husband. She expressed not wanting to go to the dining room, out of concern that she would not be home when her husband returned. “Now, I know he’s dead. I just have this unnecessary connection with going to the dining room and him being gone.” On the first day of us meeting, I knocked on her open door to her room and Grace said, “Come in.” I walked over to Grace who was seated in a wheelchair, in a room lit by the minimal light trickling in through an uncovered window. She was looking through files in a cabinet and said, “I’m looking for some paperwork on my husband.” I asked, “May I please sit in this chair?” Grace responded, “Oh, please do. Make yourself comfortable. I’m sorry I can’t offer you a cup of coffee or tea or something. My home is not like it used to be.” I said, “Thank you for the offer. I’m here for a cup of you. Claire cares about you and wants to make sure you feel supported. So, if you’d like to share a cup of you, I’m listening.” Grace said, “That’s a very interesting way to put it. You want to get to know a cup of me? Hmmm… That’s beautiful. That’s very kind.” I smiled and said, “How about a cup at time?” She responded, “OK, Mark is dead. I think my mind is playing tricks on me because I want to believe he’s just out of the house for a bit…people say he’s just

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down the hall, then I question, ‘Is he?’ And then I remember he’s dead. Why do they make these comments?” I asked Grace if she would like to go for a walk while we talk? Grace said, “I think I haven’t been out of here in quite some time. Yes, that would nice.” Claire shared with me Grace had not left since returning from the dining room on the day Mark died. We walked together (Grace seated in a wheelchair and using her feet to create forward movement and me next to her) toward the front door and as we approached the front door there was a bathroom to the right. Looking into the mirror, Grace opened the top left drawer and retrieved a brush. I asked, “Who is that in the mirror?” Grace responded, “Monkeys…one is named Grace.” The above highlights some of our intake session. Sessions took place 3 times weekly for a little more than 3 years. In what follows are highlights from SOAP notes documented after each session. I place an emphasis on time point check-ins at the following marks from intake: 3 months, 6 months, 12 months, and 24 months. Also included in below sections are numeric data collection focused on areas of physical output. I will also provide data on a measure of grief as well as other areas that emerged in our sessions. Grace’s records indicated a diagnosis of Major Neurocognitive Disorder 2 years prior to our first session. Two weeks prior to our intake, she received a diagnosis of delirium. Further, her records suggested exhibiting signs of severe psychosis (i.e., delusions, hallucinations, disorganized speech, grossly disorganized, or catatonic behavior) and a psychiatrist referral prescribed Haldol at 20  mg, 3 times a day. According to the DSM-5, two key diagnostic features of delirium are as follows: a change in focus and awareness and cognition is affected (APA, 2013). Another criterion stipulates that change in focus and awareness and cognition is not due to a severely reduced level of stimulation such as a coma. Included in this description is not a recognition of an environmental coma. This can occur when there is a severe lack of stimulation in a person’s environments. Other significant findings noted in her medical records: recurring urinary tract infections (UTIs) for the past 3 years, consistently low blood pressure for the past 6 weeks, severe dehydration the past 3 weeks and syncope. Severe dehydration was noted on several occasions 6  months prior. Episodes of syncope, with unknown etiology, were noted in her medical records for the past 5 years. I incorporate assessment using questions from the Brief Grief Questionnaire (BGQ) in a conversational format, in the intake and other sessions (Shear et  al., 2006). When Grace would mention a loss, I would incorporate the BGQ questions into our conversation, note a numerical value and begin a timeline for reassessment, adhering to a 3, 6, 12, 24, and 36-month timeline (see Table 9.1). During the intake, Grace remarked, “I am usually mostly a happy person. I want to be again.” About 1 month into working together, Grace discussed a number of losses, “that all feel like they are coming undone. I thought I tied them up in a nice, neat bow and now with Mark dead, I’m wondering if I ever actually made a bow or if I just fouled myself into thinking it was neat and tidy. You know, if we really want to, we can see a bow in what is actually a tangle of strings.” Throughout our work together, when she would mention another loss, we would investigate if there were parts of the loss that felt tangled or unintegrated.

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Table 9.1  Loss history Loss # 1 2 3 4 5 6 7 8 9 10 Overall

Loss type HB #2 death Organ performer Dementia Dx Social entertainer Caretaker – mom Mom death Cancer @ 70 HB #1 death Dad death Sibling death

Months I 10 8 8 8 dnd dnd 1 dnd dnd 2 8

3 4 4 4 7 3 3 1 6 4 1 5

6 2 2 1 5 2 2 0 3 1 0 3

12 0 1 2 4 4 5 0 2 1 0 2

24 0 0 0 1 0 0 0 0 0 0 0

36 0 0 0 0 0 0 0 0 0 0 0

During the intake session, questions on the BGQ were incorporated for each loss initially mentioned (Shear et al., 2006). Grace also identified as an avid organ player and shared having not played in a while because “they took the one in the church out for service and it hasn’t returned yet…that was probably a year ago.” “There sure are a lot of memories to go through. Sometimes some of them are better left to be unthought-of.” I asked, “It sounds like you have a lot of memories. Where do store all of those?” She said, “In a pigeonhole. Many of my years are marked by heartache. It is just part of the process it doesn’t mean you should ever stop loving.” She was born in the United States, and just after her birth, United States declared war against Germany. Grace was the youngest of 12 children and soon after graduating college, World War II began. Her first husband was killed in action. She was very close with her mother and several of her siblings. Grace took care of her mother for about 40 years, until her mother died at age 95. When Grace was in her 50 s, she married a second man. Grace shared, “This relationship was so strong. I think this the most secure relationship I’ve experienced in my life. All of the parts of a friendship and romantic relationship were met with him. It just seems like he was taken so soon.” At a later session, Grace remarked, “Perhaps my confidence was able to grow out of the fertile soil of our marriage. Many things grew in this garden.” Grace attended college at a time when it was less than likely for females to attend college, and particularly for a woman to gain educational experiences outside the fields of education and nursing. Based on females enrolled in US colleges in 1937, they comprised 40.5% of total student population (deduced from statistics provided male enrolled students), (Monthly Labor Review, 1937; Badgera et al., 1940). According to the United States Employment Service, women received about US$ 10 per month less than men and female employment in banks increased during the years of the war. Occupational positions filled by women were positions that prior to the war, women did not traditionally fill (Federal Reserve Bank of St. Louis, Facts on Women Workers, Women’s Bureau U.S. Department of Labor, 2023).

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Grace continued to fill employment positions in a variety of nontraditional female roles throughout her life, working for decades as a stock broker. As was mentioned previously, Grace’s first husband was killed in World War II and she remained single a large part of her life. In part, this was because of her commitment to caring for her mother. She tended to her mother’s health until her mother died when she was in her mid-90  s. Grace remarked, “My dad died when I was young and left my mom with kids so I never wanted to make it harder on my mom than it already was. She was very sad for quite sometime after Dad died.” Grace and her mother moved to several different states and Grace expressed, “I always needed to have a practical profession to take care of mother and me. My brother tried to help out when he could and then as my sisters got older I needed to help take care of them. That’s what you do when you are the last born. They all took care of me when I was little.” When Grace was in her mid-70 s, she received a diagnosis of breast cancer and dealt with the health ramifications of this for 2 years. “It [the cancer] was really strong but I think God was stronger. It also made me stronger in the process. Maybe in some ways dealing with that made me understand Mother a little bit differently.” Grace shared multiple times that the process of cancer diagnosis, active treatment process and follow-up was a motivating factor when “I faced other uncertainties I just remind myself of how uncertain I felt then and think maybe success will happen again.”

Goals and Motivations During our intake session, Grace said, “I think my goals are pretty simple. See, I want to be kind, I want to learn more and I don’t want to feel lost. I don’t think these are too unreasonable. Everyone keeps telling me I don’t know where I’m going. I know how to get from my desk to the bathroom sink. I know how to get from here to the store for stamps or something. I just don’t much care for going out right now.” At the end of our intake session, Grace said, “Being able to talk to someone who really listens makes a difference. I hope I gave you a cup of me.” This is an example of how contextualized long-term and short-term memory functioning was accessed throughout the duration of our work together. Rather than rely on manualized cognitive assessments, I sometimes opt for embedding assessment practices into the conversations in the intake and follow-up sessions. This requires employing active listening skills, creativity, and a keen sense of awareness. Grace’s goals ranged from physical to social to emotional to psychological. I will name a few of Grace’s goals and motivations and we will explore them at greater lengths in sections to follow. She also expressed increased motivation when she made connections between various activities. For example, “I think playing the piano helps too when I brush my hair...and write...and think.” One of Grace’s goals with physical health was: “One day I want to try and stand using the walker.” Grace’s goals around her desire to increase her physical strength are directly connected to maintaining a sense of independence. From everything we know and will

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learn about Grace, we might recognize the significant role that independence has played throughout Grace’s life. Being a self-determined woman, she expressed “really not liking having to be in a wheelchair. People treat me differently. All I can think is I just hope I never treated someone who used a wheelchair as less than human. I am not perfect though, so I guess it’s possible.” We focused on increasing strength in the back, lower abdominals, and foot and knee flexion and extension, as well as hip mobility. Depending upon level of fatigue, repetitions and sets were adjusted. This required Grace to tune into feelings and sensations in her physical body and pay attention. Once acknowledging a presence of fatigue, the task then became to complete the agreed upon activities, executing the exercises in line with fatigue awareness. Second, Grace’s goal of playing the piano “because I just used to get so much joy from performing and seeing the effects on other people, maybe it’s possible to bring back something I let go of.” Grace created a detailed schedule, developed partly from her previous experience of having taught herself to read notes. She said, “You know, if you really want to learn something, then you just have to make up your mind and stay focused, no matter what else is going on.” Grace committed to practicing at least 10 minutes every day. She stated at the beginning of a session, about 4 months into working together, “I think if I practice enough, I’ll get back to where I was before.” Grace played the hymn “Coming Home” and remarked, “Even though this is a bit out of tune, it’s really fun.” Six days after discussing the goal of practicing the piano regularly, Grace mentioned, “I guess you were right when you said the first time I played this, that if I keep playing it, then my hands will be less shaky.” As Grace continues to experience shifts in her lived experiences, she is making connections between functioning of the physical body, emotional sensations, and cognitive processes. As she remarked, “Often my mind says one thing and my body another.” One year into Grace’s self-exploration, her goals shifted, with one being to “make one good recognizable note on the piano.” Overall, she mentioned her motivations are: “To keep being kind, active and engaged. I think I have more to give.” She commented about her cognitive functioning stating, “Sometimes my thinker doesn’t work like I think it should.” At another point during this year follow-up time frame, she mentioned, “I think my mouth and thinker are not always connected.” Three years into her process of self-exploration, her goals shifted to include: “Read my book at talent show and make one good recognizable note on the piano.”

Explorations, Interventions, and Discoveries We worked together for a little more than 3 years. In what follows is a highlighting of our work together, documented in SOAP notes generated after each session. Some of the data is pulled from a general overview of notes and other data from focusing on specific time intervals of 3, 6, 12, 24, and 36 months. A loosely based structure of content analysis is applied. The work Grace did in our more than 3 years

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together ranged from a desire to shift her personality to “tying all those losses into neat bows.” For example, she commented one time, “Even though I resist drawing – it’s not my favorite – I do see the benefit.” With regards to her work on her personality she mentioned, “It really does make a difference just goofing around. Everything doesn’t always need to be serious all of the time. I guess I just have never known I could be another way.” At the 2-year mark, she remarked: “I’m realizing more and more how being serious might not always be the best option.” At the beginning of our sessions, Grace lived in a large skilled nursing section of a long-term care community (LTCC). Grace’s apartment was considered a double occupancy room. When her husband was alive, the organization allowed this and following his death, they said they would need to move someone else into the other side. Grace was opposed to “someone else living in my house. It’s just not what I’m used to.” Claire, her power of attorney and a friend, asked her if she wanted to move to a different location, with a different organization, in a neighboring city, in more of a home-like setting. “It will be a room in a 4-bedroom house, with a small living and dining room. There is another house on the property with 8 bedrooms and a large living and dining room where activities take place,” described her friend. Grace was enthusiastic about the prospect of being in a town where she had previously lived with her husband for 45 years. She moved to this new residence. During our time working together, there were two overarching areas within which our sessions took place: long-term care space and small private living community. Within the first setting, our sessions would sometimes take place in Grace’s apartment, other times in the chapel, the halls, or the garden. In the second setting, Grace opted for car drives, the woods, the garden, or her apartment. In both living environments, there were often people walking in and out of the room/apartment without knocking. Although we discussed confidentiality and ethical concerns at length in Chap. 5, it is important to note here that due to sessions taking place, often in public places, I saw the importance in clearly communicating confidentiality. At one point, Grace mentioned, “Maybe me talking through things I’ve been carrying around all these years…you know…in a car or in the garden or chapel has been more helpful than the work I did with a therapist I saw 40 years ago because it feels more natural. I don’t know. It just feels like so much makes sense now.” Due to a fall 6 months prior to the start of our sessions, coupled with inadequate support for follow-up with physical therapy appointments, Grace relied on a manual wheelchair for mobility. Rather than limit our activities, we can think of reliance on a wheelchair as framing our activities. An important piece to remember here is the reason for incorporating physical activity into sessions. As we discussed in the DGT chapter, there are three reasons for physical activity incorporation into sessions: empowerment, cross area performance mastery transfer, and physiological effects. There was a total of 10 activities Grace selected over the course of our time together: mail and magazine sorting, item sorting, car drives, walks outside, seated postures, breathing, playing piano, playing guitar, writing, and drawing. Depending upon the activity selected for the session, coupled with Grace’s stated goals, there was sometimes homework for Grace to practice between sessions. As

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was mentioned in a previous section, Grace desired to increase her overall muscle strength as well as maintain her identity as someone who plays the piano. Two examples of homework are systematic breathing and piano practices. These explorations often led to discoveries. For example, at the 3-month mark, Grace mentioned “I think I need to face the death of my nephew and I’ve been putting off calling her [great niece].” Grace continued with her speculation on resistance to calling by stating, “He was in the Army and died when he was away. Maybe this reminds me of my first husband. You know, we were married, he left and he never came home. This was a lot of heartache at the time. That was a very very long time ago. I don’t understand why I’m even thinking about it now.” We engaged in physical activity, sometimes walking while talking, and other times the focus of part of our session was on a specific physical activity. When we would walk and talk, I compiled data by timing our walks for a set distance. Additionally, we collected data on her ability to maneuver the wheelchair by rotating it at 90 degrees and 180 degrees. These were two indicators Grace demarcated as important and significant for measuring change in functioning. Grace remarked, “I think using my mind and body are equally important and I try to do as much as I can.” We engaged in two other physical practices: breath awareness and muscle engagement (both muscle contraction and relaxation). Grace remarked, “Often my mind says one thing and my body another.” Grace continued to engage in congruence awareness where she allowed not her ego to dictate what the body “should” be doing. With practice and follow-up homework of yoga postures, Grace commented “some of those exercises are hard, but I always try.” She also enjoyed attending a weekly group yoga class. With the combined efforts of breath awareness, Grace commented, “Taking deep, slow and controlled breaths really does give me energy.” Sometime Grace would turn her attention to this when we were outside walking and talking and other times she would do this when she noticed herself feeling stressed or “blue.” For example, she remarked, “When I breath in that way you showed me, I really do feel more alive.” As was mentioned above, our meeting location varied. Regardless of where we met, we were always oriented toward nature. Whether inside or outside, real or digital images of nature were present in each session. There were two locations where Grace lived. The first location was an apartment in an LTCC. When here, we would walk together (her seated in a wheelchair and using her feet to mobilize and me standing next to her) to a nearby courtyard and outside around the wooded property. Other times we would walk to the church or the store, both of which were within the community. When walking to the store we would stop and the fish tank and ponder for a bit. Inside the church, there was a window opening out into a courtyard. The second living environment was in a house where Grace had five other roommates. Here, our sessions would take place inside her apartment/room and oriented toward the window that looked out onto grass, as well as woods. Sometimes, Grace would opt for walks on a path just outside her front door that meandered through the woods. We would also go for car rides, find in Grace’s words, “a suitable place for gabbing,” park and hold our session seated next to each other in the vehicle looking

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out across a body of water, or other times surrounded by trees. Grace remarked, “I do feel much better when I go for walks and get out of here. Fresh air always feels good.” At another point, Grace commented, “Getting fresh air – smelling that smell that only fresh air has, is good for my soul.” “The air helps me think and when I think, I think I am helping myself to see old age...which just maybe I’ll see one day. Yes. There really is something about getting outside and exercising.” As was discussed in Chap. 6, it is important to view a person as a whole person, particularly the parts of the personality that exist outside of the symptoms associated with the diagnosis of major neurocognitive disease, or in our early work together, delirium. As we have already seen, Grace is so much more than the label of disease. Incorporated into sessions is an asking of overall feelings regarding four areas: grief, tired, relaxed, and health. These areas emerged from our work together, as points of focus. In Fig. 9.1 a tracking of these areas can be seen across the time of our work together. Another important component of well-being to consider is the presence of protective factors. During our fifth session, Grace contemplated, “I don’t get out much, but maybe I should start leaving on my own. I feel safe now.” Additionally, Grace shared at the 3-month mark, “I talk with Mark throughout the day. Mark does not respond when I say hello each morning. I don’t even think he hears me. It’s one of those things I do for me. To make me feel better and to make me not so sad.” Protective factors could also be broken down into smaller components, such as an awareness of sensory health or functioning. For example, at the 2-year mark, while attending a live performance of a piano player together, Grace asked, “I feel the music. Can you feel it in your heart? You can’t think your way through a piece of music.” You can also reference the above figure to see data collected across a

Self-Reported Data on Areas of Wellbeing 10

10

9

9

8

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6

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Grief

Tired 3

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Relax 12

24

Fig. 9.1  Self-reported data on measures of well-being

36

Health Intake

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time-span that looks at self-reported areas of protective factors (Grace’s perceived quality of health). There were several occasions when Grace expressed insight with her self-­ exploration process, making large connections between physical, cognitive, emotional, psychological, and social health states. She shared her observations on her thought process: “It takes the travel time from my brain to my hands much longer than it used to,” or at the 3-year mark when she remarked, “My mind works much slower than my body. I’d like my body back…It’s in limbo…between life and death.” With respect to her grieving process grief, Grace shared it has been “spotted throughout my life, then it came with a real punch. I don’t like to cry.” At the 1-month mark, Grace commented, “Sometimes I want to move, and go outside, but it’s dark in here and it mirrors how I feel inside.” After engaging in a dedicated breath practice, she said, “I think I might have some energy to write...and with time this might help with feeling so blue.” With regards to her work on shifting her personality and her relationship with herself, she commented, “I want to live for me. I’ve always done for others.” I’m learning to protect myself. After having an experience with a shower, Grace remarked. “It was not necessary to make me take two showers today. The way the whole process is…well, it makes me think they think I’m not able to care for myself. I’m not allowed to do anything. It’s humiliating. And so, I check out. I don’t trust them.” Overall, with the process of establishing internal emotional congruence, Grace remarked, “I am seeing more and more how helpful it is to talk. That’s new to me.” And at the 2-year mark, Grace expressed with confidence “I really am having a blue day. This is the first time I’ve said this and I feel OK saying it.” At the 3-month mark, Grace’s predominate focus was on exploring feeling states and using physical activity to make deeper connections. She previously had drawn a dog and we used this as a way to talk through her own feelings, as she remarked in the beginning of our work together, “Feelings have often eluded me. I’ve never much seen the practical side of sharing them with everyone…maybe not even myself. Some of her observations on feelings are in chronological order as follows: “the puppy is being heard and is protected,” “the puppy is frightened,” “the puppy is confused. It seems to get lost sometimes,” “the puppy is protected. Even though the mom was up in arms, the puppy knows it is safe. And here [referring to most recent drawing], the puppy has found it and yet does not know.” At the 6-month mark, Grace remarked, “I have been very fortunate to have so many people in my life who care.” She commented on the importance of the people in her life who have been sources of secure relationships “I always knew I could count on them and I really do think this has made such an impact on my health. So, even though I’m dealing with having blood when I go to the bathroom I am calmer than I would expect myself to be. I just have questions: I’d like to figure out what’s next. What is death? and I want to do something while I’m waiting my turn.” At the 1-year mark, Grace highlighted a few current sources of protective factors: having

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own space, feeling independent, physical activity, feeling like making a contribution. “I really do think this move was a smart decision.” At the 3-year mark, we were walking outside to go for a ride and Grace remarked, “Oh, you got a new car.” Another person’s van was parked in the driveway. I said, “My car is around the corner.” We continued walking together, rounded the corner and with my vehicle in sight she said, “Ah, yes. I know that car.” The following week she commented, “I know we were going to go for a ride, and yet I don’t feel up for it.” She suggested engaging in music playing. I held the guitar as she plucked and she said, “It hurts to do this [pluck guitar strings].” I asked, “your fingers or ears?” Grace laughed and said, “You are vey quick. My fingers are fine.” The following week Grace was lying on her back in her bed when I arrived at her home and she was looking at the top of the wall near the ceiling and expressed minimal arousal. I asked, “What are you looking at?” Prt said, “The monkeys in the tree.” I asked, “Are we the monkeys in the tree?” Prt said, “You’re always quick.” When I arrived at Grace’s home, she was seated in the dining room eating with a few of her roommates. Upon me entering the home, one of the people who work there, let out a sigh and said, “She is irritated today and I don’t know why because she won’t communicate. So maybe you can figure that out.” I asked Grace if I could sit next to her at the dining room table and she said, “That’d be lovely.” We sat together as she finished her lunch and then we went into her room. Grace presented clear declarative and semantic memory functioning and then said, after glancing in the direction of the door to ensure it was closed, “I heard her when you came in. She’s not pleased with me. I am frustrated because they put someone else’s shoes on me. It shouldn’t be that hard to figure out.” Within the first few weeks of us working together, I brought an old small keyboard for Grace to borrow. When I returned the next session, the batteries had died. Grace said, “I was able to find two and I asked someone if they sell batteries in the gift shop and they said they don’t think so. I didn’t go there and check for myself.” The following session I had two batteries in my hand and Grace said, “You brought them for the little piano so we can play.” Other times, Grace would remark on the day of the week, such as “You’ll be back on Friday. That’s in two days” or “I know today is not exercise with you, but I look forward to it when Friday gets here.” Other times she would evidence long-term memory functioning by referencing “Your business card is on the mirror.” While we were walking outside, she remarked, “That’s where I used to park my car.” Leaving one day to go for a walk, Grace instructed, “Make sure to pull the ribbon you gave me so the door closes all the way.” There was a ribbon on Grace’s door. This is an example of her ingenuity. She commented during one session, “Now that I’m feeling better about leaving I recognize I can’t because I can’t close the door all the way. And, maybe I’m concerned I won’t be able to find my way home. All of the doors look the same…except the screams that come out of them are different.”

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Another way, Grace evidenced cognitive functioning is through her consistently describing happenings in drawings to people who ask. When Grace made the decision to relocated to a different living environment, she expressed typical changes in thought patterns that happen as a result of stress. During the move, Grace responded to my question of “What are some of your thoughts at the present?” by stating, “That’s the real question. What are my thoughts doing on anything and who knows because I’d sure like to ask them so I could know.” In addition to our work together, Grace engaged in group exercise, physical therapy, massage, vitamin C injections, occupational therapy, and pharmacological treatment near the end of her life. Two months prior to her death, the hospice nurse ordered a daily dose of 100 mg of Haldol. Grace expressed feeling very “uneasy and I see spirits. There are very bad things going on.” In advocating for her wishes, based on a prior conversation, she was slowly tapered off Haldol.

Overall Outcomes While there are numerous connections that could be made between onset of treatment and later dates, as well as significant results to discuss, for the purposes of this section, I will highlight major outcomes in three areas of health: physical, cognitive, and emotional. First, let’s explore the significance of two references to monkeys with 3 years in between the two comments. Second, Grace’s understanding of the hospice nurse who was sent to work with her, whom she labeled “the agent of death.” Third, let’s discuss the conversation about chocolate and life embedded identifying as a serious person. During the first session, Grace mentioned seeing monkeys in the mirror, one of whom was named Grace. Approximately 3 years later, Grace’s comment, “Just like the monkeys in the mirror that first day,” is in some ways a nod to a sense of awareness. This somewhat astonishing finding is evidence of an active default mode network or of the memory being stored in the neocortex. The process of episodic memories relies on three steps: encoding, consolidation/storage, and retrieval. In a way we can think of these as three gates in our brain. When any one of these gates are closed, the overall process is interrupted. In other words, if we can experience an event, assign value to it and yet not access it at a later date, this begs us to ask the question, how important is it to assign value in the first place? Well, because it’s not so straightforward. There is vastness to the science of memories, much of which is unknown at present. This said, one piece we do know is that another type of memory process is termed remote memory. In this instance, memories are no longer dependent upon the hippocampus for retrieval and instead seem to inhabit space in the neocortex. Or, in the words of Grace, “You

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should always keep memories in your heart and not your mind…eventually your mind will wear out.” A second outcome is Grace’s understanding of the hospice nurse who was sent to work with her, whom she labeled the “agent of death.” In the State of Washington, where treatment was delivered, hospice care is provided to patients with life-­limiting illnesses who no longer wish to pursue treatment to cure their disease. The hospice nurse was charged with delivering Haldol, an antipsychotic medication. Some believe this to be effective in treating delirium and severe agitation in end-stage dementia. I come from the perspective that the behaviors that were being labeled agitation was a form of Grace exerting her agency. It does not make sense that a person with an acute confusion state would be able to ascribe a name, recognize this person, and continue to recall this self-assigned name. A third outcome is embedded in the conversation about chocolate and life coupled with an exploration of an attachment to an identity as a serious person. The idea with the conversation about chocolate, something we shared often, was to start from a baseline of a familiar subject. I then added two combinations that made sense together and a third that did not make sense. This is an attempt to offer a contextualized variation of a portion of the Mini-Cog (Borson et al., 2000). With respect to the validity and reliability of this instrument, there is a 95% confidence interval. According to the Hartford Institute for Geriatric Nursing, a chi-square test reported 234.4 for Alzheimer’s dementia and 118.3 for other dementias (p  stand) 31.16″ Social: Church, group exercise, friends at dining table, group outings, gift shop, beauty parlor. Grief: 5/10 (see narrative) 3. Identify Current death episode is bringing up losses from previously experienced patterns in deaths. problem Grace expresses “I want to process my feelings, I just get so confused when people say he’s just down the hall. It’s as if I forget he’s dead and think he’s coming home.” Consider employing content analysis.

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9  Case Composite: Grace

Areas to explore 4. Explanatory hypotheses

Data collected When previous losses are integrated into current life phase, I will experience more settledness. My anxiety will decrease if I can make sense of some of this (loss). Delirium Sx are grief Sx. When I identify how I can contribute to making a difference, I will feel more complete. Even though I’m at the tail end of this snake, I still have things I need to figure out. 5. Validate and BGQ score decreases with grief work. refine hypotheses I am strong because I can stand without the walker. I’m also strong because I am determined to play the piano. 6. Test and revise Feel OK with others and my own death. hypotheses Feel comfortable expressing and receiving love.

References Badgera, H.  G., Wally, F.  J., McNamar, J.  H., & MaNturr, P.  V. (1940). Biennial Survey of Education, The United States Statics of Higher Education 1937–38. Bulletin, 2(4) Available from https://files.eric.ed.gov/fulltext/ED543891.pdf. Accessed on 2 June 2023 Borson, S., Scanlan, J., Brush, M., Vitaliano, P., & Dokmak, A. (2000). The Mini-Cog: A cognitive ‘vital signs’ measure for dementia screening in multi-lingual elderly. International Journal of Geriatric Psychiatry, 15(11), 1021–1027. Employment Offices. (1937). Monthly Labor Review, 44(5), 1271–1277. Federal Reserve Bank of St. Louis, Facts on Women Workers, Women’s Bureau U.S. Department of Labor (2023). https://fraser.stlouisfed.org/files/docs/publications/women/newsletter/dolwb_ factsww_19470930.pdf. Accessed on 2 June 2023. Shear, K. M., Jackson, C. T., Essock, S. M., Donahue, S. A., & Felton, C. J. (2006). Screening for complicated grief among Project Liberty service recipients 18 months after September 11, 2001. Psychiatric Services, 57, 1291–1297.

Part III

Importance of Considering a History of Trauma in Dementia Health: Evidence, Limitations and Conclusions

Chapter 10

Evidence for Including a History of Trauma as a Risk Factor for Dementia Development

Key Points • Current research on the risk factor of trauma in increased dementia diagnosis. • Significance of considering trauma and dementia within a racialized context. • Impacts of stress and trauma on the brain–body relationship.

The relationship between a history of trauma and later life dementia development is a recent area of study. As we have discussed elsewhere in this book, there is increasing evidence that suggests further inquiry is necessary for consideration of adding a history of trauma or adverse childhood experiences (ACEs) to the list of modifiable risk factors in dementia development (Corney et al., 2022; Tani et al., 2020). I will present the preliminary results of two studies conducted for the purpose of broadening our understanding of dementia symptoms from the perspective of trauma and grief exposure. Data in both studies are intended to provide further evidence for why measuring unmetabolized grief needs to be included and assessed in the field of dementia health.1 Furthermore, measuring trauma histories is part of the process of acknowledging, validating, and integrating past events into a coherent present self-narrative. Study 1 presents data from a mapping review of the literature on articles mentioning the dorsolateral prefrontal cortex (dlPFC), the dopamine system and its  Some of the preliminary findings from these two studies were presented at national and international conferences and appear in print in the following works: Ione, A. (2020). Dorsolateral prefrontal cortex changes in grief and TBI: Significant risk factors in dementia development (December 2020). Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 16(S12), 231; and Ione, A. (2021). A Case for Trauma-Informed Dementia Care: The Emancipatory Power of Psychological Resilience and Trauma from COVID-19. Innovation in Aging, 5, 92. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_10

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corresponding synaptic components in study subjects affected by traumatic brain injuries (TBI). We will explore the six overarching themes I identified as corroborating evidence for why unmetabolized grief (or unintegrated trauma) is an emotional equivalent of TBIs. With extensive research on targeted therapies for TBI, the potential to synergize the advancement of early detection of dementia among people affected by complicated grief or a history of trauma is promising. Study 2 is an exploration of the costly global health concerns of three overlapping concerns: dementia symptoms, corona virus disease (COVID-19), and trauma. When three concerns intersect, it may seem the only appropriate and accessible adjective is tragic. At a time when the world was facing the pangs of the pandemic tragedy seemed ubiquitous, and yet, this was not the only narrative. Another possible narrative is one informed by hope, autonomy, and resilience. For people living with dementia symptoms, COVID-19 offered a real opportunity to metabolize previously unmetabolized traumas. The event of COVID-19 presented a unique opportunity to interact with stress in a previously unimagined way. There needs to be the creation of an appropriate therapeutic support system, where the stresses of a traumatic event can support healthy neuronal rewiring in people living with dementia symptoms. For people living with dementia symptoms, who experienced the event of COVID-19 as stress, it is possible to have their experiences individually dosed in a way to facilitate memory growth. We will see the results of a mapping review and discuss policy and program recommendations for the field of dementia health.

Unmetabolized Grief: An Emotional Equivalent of TBI Grief creates neuronal and structural changes in the human brain (O’Conner et al., 2012). As we have discussed elsewhere in this book, changes are more significant for people who develop prolonged grief disorder (PGD) compared with their noncomplicated grief counterparts (O’Conner et al., 2008). Although PGD has recently been included in the ICD-11 (ICD, 2022), prevalence rates vary considerably from single digits (Prigerson et al., 2009) to 10 (Lundorff et al., 2017) and 13% (Bonanno & Malgaroli, 2019) to 50% (Djelantik et al., 2020), depending upon what algorithmic diagnostic criterion is used. Nevertheless, brain changes are evident. The longterm effects of these brain changes, most notably in the dorsolateral prefrontal cortex (dlPFC), remain in the infantile stage of scientific inquiry within the body of grief literature. The dlPFC is an area of the brain responsible for executive functions such as conscious decision-making, reasoning, working memory, inhibition, as well as outcome prediction (Hertrich et al., 2021; Jung et al., 2022). The dlPFC is part of a larger system, the multiple demand network. Other parts of this system are the dorsal anterior cingulate cortex (dACC), nucleus accumbens, insular cortex, and inferior frontal gyrus. One of the ways the dlPFC controls behavior is by receiving messages from other areas of the brain. The neuronal, structural, and functional changes in the dlPFC resulting from a history of TBI have been more extensively studied in comparison to the effects grief

Unmetabolized Grief: An Emotional Equivalent of TBI

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and dementia have on this area of the brain. We discussed in Chap. 3 the dACC and the dlPFC are two areas highlighted in neuroimaging of brains of people affected by behavioral and psychological symptoms of dementia (BPSD) (Liu et al., 2017; van Engelen et al., 2023). The precise functions of the dlPFC and dACC in people who exhibit BPSD continue to be an important area of inquiry. TBIs have recently been added to the list of modifiable risk factors for later life dementia development. Some researchers evidenced an increased risk factor between TBIs and deficits in working memory (Yi et  al., 2021; Nordström & Nordström, 2018). In one large systemic review, findings revealed TBI subjects have an increased dementia diagnosis prevalence at a rate of 6–16%, compared with their counterparts who do not have a history of TBIs, where a dementia diagnosis is experienced at a rate of 3–10% (Peterson et al., 2020). This study, based on 357,558 veteran subjects with traumatic brain injuries, estimates people with a history of TBI are at a nearly 4 times increased risk for dementia development, double that of their concussion without loss of consciousness counterparts. Other researchers suggest there is not enough evidence to support increases in dementia incidence and memory decline among TBI subjects (Grasset et al., 2020). Nonetheless, TBIs have been added to the public list of 12 risk factors for later life dementia development. The areas of the brain affected by grief can be understood by exploring a little about the reward system, or the dlPFC. In a landmark study, magnetic resonance imaging (MRI) of brain scans of 20 teenage girls who engaged in self-injurious behavior were compared with 20 of their non-injurious counterparts (Beauchaine, 2019). There was a detectable decrease in volume of the insular cortex and inferior frontal gyrus among self-injurious girls. On one hand, the insular cortex is responsible for sensory processing, by linking sensory information from within the body and from the environment. Augustine first suggested that this brain region be named the paralimbic system or the limbic integration cortex for its role in integrating emotional processing (1996). The importance of this finding will be discussed later in relation to the role of the nucleus accumbens in complicated grief as well as dementia. Other roles of this tiny hidden island within the cerebral cortex are decision-­making, self-awareness, and empathy. On the other hand, within the left hemisphere is housed the inferior frontal gyrus predominately responsible for language tasks. Findings from Beuachaine’s study require further research efforts to know if the decrease in brain volume is a precipitatory factor, leading study participants to self-harm or is a resultant effect from the self-injurious behavior. As was previously mentioned, brain volume loss has been significantly correlated with people who experience abuse, neglect, and trauma (Cole et  al., 2019). Grief  – a traumatic emotional injury – warrants further investigations, with the mounting correlative evidence between TBI and dementia development. Exploring the role of the nucleus accumbens – another mechanism involved in the dlPFC reward circuitry – in complicated grief is significant by itself and increases in importance when juxtaposed against neurological changes in the brains of people affected by dementia. In one study, participants who experienced complicated grief had a presence of reward-related activity in the nucleus accumbens when talking about the deceased (O’Conner et al., 2008). O’Connor et al. suggest that this may

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hinder both actualizing the death and the adaptation to a life without the deceased. At the same time, reward relation activity may provide therapeutic power in working with people affected by dementia. A study exploring the correlates between cognitive functioning and the nucleus accumbens among participants diagnosed with dementia found this area to atrophy (Nie et al., 2017). Volume changes correlated with a decrease in clinical scores on the Mini-Mental State Examination (MMSE) and the Montreal Cognitive Assessment (MoCA). Understanding neurological changes that occur as a result of grief is growing in importance and a recognition of necessity to develop preventative therapeutic approaches to protect against cognitive–emotional shifts is needed now more than ever. When grief episodes remain unrecognized, invalidated, and unintegrated, the resulting neuronal shifts may lead to later life dementia development. WHO’s Global Action Plan on Dementia, within the section on a public health response to dementia, holds as one of its aims identifying dementia risk reductions by 2025. If indeed there is neuronal activity overlap in the dlPFC of people affected by grief, dementia, and TBIs, then assessment and treatment of grief warrants further investigations.

Methods and Materials This study followed guidelines outlined in Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) (Moher et al., 2009). In September 2020, a comprehensive electronic literature search was conducted of a single database: Medline. I employed keyword search terms: behavioral and psychological symptoms of dementia AND dorsolateral prefrontal cortex (N  =  2); neuropsychiatric symptoms of dementia AND dorsolateral prefrontal cortex (N = 1); prolonged grief disorder AND dorsolateral prefrontal cortex (N = 1); grief AND dorsolateral prefrontal cortex (N  =  5); and traumatic brain injury AND dorsolateral prefrontal cortex (N = 115). This search was conducted using the Boolean/Phrase AND to investigate the existence of neuronal activity overlap in dlPFC among people affected by grief, BPSD, PGD or TBI. All searches were limited to the English language and restricted by date (2001–2020). Search results were compiled using Word and Excel documents and I carefully analyzed data following PRISMA guidelines (Moher et al., 2009, see Fig. 10.1). Search returns that analyzed non-adult and non-human subjects were excluded. Study protocols were secondarily searched for follow-up and execution of study. For study protocols that remained incomplete, these too were excluded. Inclusion criteria was based on articles mentioning the dlPFC, the dopamine system, and its corresponding synaptic components. Most studies relied on data from live subjects, although studies using transcriptomatics of postmortem dlPFC were not excluded. Searches that returned systemic reviews were included. Studies that did not clearly indicate that they were focused on changes in the dlPFC were excluded. Similarly, studies indicating a contrast to other outcomes such as depression or anxiety were excluded.

Identification

Methods and Materials

329

Records identified through database searching BPSD/NPS = 3 PGD = 1 Grief = 5 TBI = 115

Eligibility

Screening

Records after removed (N = 75)

Records screened (N = 75)

Full-text articles assessed for eligibility (N = 51)

Included

Studies included in qualitative synthesis (N = 3)

Studies included in quantitative synthesis (N = 48)

Fig. 10.1  Study identification and selection according to PRISMA guidelines

I independently reviewed the entirety of included articles and ran a second analysis of meeting inclusion criteria. Articles that mentioned dementia yet did not directly study subjects diagnosed with dementia were excluded. I completed an Excel spreadsheet to extract the following data: sample size, instruments used, methods, and results (see Table 10.1).

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Table 10.1  Mapping review data Authors Bryant et al. (2020) Schneck et al. (2019) Grief Freed et al. (2009) Najib et al. (2004) BPSD/ Alves et al. NPS (2017)

PGD

van Dyck et al. (2020) Nowrangi et al. (2020)

Rajkumar et al. (2020)

N 117

Instruments fMRI

Methods Results Emotion recognition Increased activity in dlPFC

29

fMRI

Modified stroop

Activity in dlPFC w/ unconscious d-SA pattern expression 20 fMRI Emotional stroop Deactivation of dlPFC with avoidance 9 Blood-O2-level Emotion recognition Increased activity in dependent fMRI dlPFC 40 fMRI Review Volume reduction & decreased metabolism in dlPFC Theoretical Increase Review Catecholamine norepinephrine and Tx w/ dopamine methyphenidate – apathy MMSE, NPI-Q, 72 3 T Siemens Delusion – positively delusions and linear associated with dlPFC Verio scanner regression analysis, volume changes (MRI) automated multi-­ label atlas fusion w/ geriatric atlas inventory 21 Transcriptomics Chronic microglial High-throughput of postmortem activation and quantitative neuroinflammation – polymerase chain dlPFC – next-­ 12 novel DEGs generation RNA reactions identified (MPO, sequencing SELE, CTSG, ALPI, ABCA13, GALNT6, SST, RBM3, CSF3, SLC4A1, OXTR, and RAB44) – AD: Chronic microglial activation and neuroinflammation LBD: Mitochondrial dysfunction, oxidative stress, and immunosenescence toward neurodegeneration (continued)

Methods and Materials

331

Table 10.1 (continued) Authors Zhang et al. (2019)

N 30

Ducharme et al. (2019)

Review Atrophpy, hypometabilism and or hypofusion in dlPFC 56 Resting state fMRI

Dan et al. (2017)

TBI

Zhu et al. (2017)

36

Suemoto et al. (2014) Kuo et al. (2014) Yoo et al. (2014)

40

Instruments 10 Hz of rTMS of dlPFC – cognitive training

Blood-O2-level dependent fMRI – ethology rTMS

Methods Proton magnetic resonance spectroscopy – NPI-­ Q

Neuroanatomical tract-tracing

BDI-II scores, ROI Fx connections

Montreal cog., n-back test tDCS, GC, MMSE, NPI-Q

Review rTMS, tDCS

NPI-Q

65

3D T1 weighted images, CLASP

NPI

Tsai et al. (2013)

26

fMRI, H-MRS

MMSE, GDE, CMAI, ratios of: NAA, Cho, ml, Cr

Rao et al. (2019)

30

Low frequency rTMS

Difusion tensor imaging

Neville et al. (2019)

30

10 Hz rTMS

NPI, trail making test part B

Results Modest effect on neuronal Fx deteriotation of dlPFC – statistically significant cognitive function and behavior change Neurocircuitry model: Cognition/planning; initiation; emotional-­ affective/motivation Anxiety Fx connectivity: Decreased activity in limbic-dlPFC and of-dlPFC No load effect on dlPFC for working memory No effect on apathy – change in working memory Reduction of NP Sx BChE-W carriers showed thinning of dlPFC compared w/ BChE-K varient carriers NP Sx pathophysiology variation, varrying neurochemical metabolites Small effect size in reduction of depressive symptoms – moderate in NP Sx reduction No significant improve in cognition for chronic DAI (continued)

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Table 10.1 (continued) Authors Hoy et al. (2019)

N 21

Instruments rTMS MagVenture Magpro30 stimulator

Skau et al. (2019)

40

fNIRS

Wu et al. (2019)

20

Face/scene matching 1-back fMRI

Rigon et al. (2019) Ware et al. (2019)

57

fMRI

38

MRI

Sullivan et al. (2018)

30

fMRI

Hocke et al. (2018)

24

fNIRS

O’Neil-­ Pirozzi et al. (2017) Huang et al. (2017) Gooijers et al. (2016)

8

tDCS, P300 amplitude, alpha/ theta EEG bands

26

Source-imaging, rsMEG

44

fMRI

Methods MINI, linear mixed model analyses: MADRS, IDS-CR, IDS-SR, QLESFQ, SDS

Results Significant improvements in cognition: Working memory (p = 0.021) and executive function (p = 0.029), no significant effect on depression VAS, Stroop-Simon, Decrease oxy-Hb in dlPFC Symbnol search, digit span, PaSMO, DSC Multivariate pattern Statistically significant increased activity in analysis of WM, dlPFC repeat-measures ANOVA Facial affect Decreased activity in recognition dlPFC compared with healthy controls TractographyReduced fiber count in HDFT, dlPFC-putamen tract, anomalous density and integrity of ECN connectivity in right DLPFC-putamen pathway of bTBI subjects Flanker task Greater deactiviation of dlPFC w/ error processing, enhanced negative coupling between DMN and dlPFC n-back test Reduced brain connectivity may correlate with pathophysiology Pre-post, Glasgow Behavioral and EEG coma scale changes, significantly improved memory Fx Time-lagged cross-correlation, phase-lock synchony Bimanual tracking task, augmented visual feedback

Abnormally increased Fx connectivity in dlPFC During execution phase: Enhanced activation in dlPFC (continued)

Methods and Materials

333

Table 10.1 (continued) Authors Leung et al. (2016) Kisser et al. (2016)

N 30

Instruments fMRI

Methods GSC

87

SBP, DBP, SPECT, CBF

Multiple linear regression models

Guevara et al. (2016)

256

NPI-Q, behavioral statistical analysis

Moreno-­ López et al. (2016)

27

Zarit burden interview, computed tomography scans fMRI – Siemens trio 3-tesla MR system

Gillis et al. 14 (2015) Han et al. 54 (2015)

Neville et al. (2015)

36

fMRI rs-fMRI: Philips Achieva 3 T scanner

rTMS: MagPROX100

Results Less activity in dlPFC for pain percepection/ affect Statistically significant SBP: Left dorsolateral prefrontal cortex (β = −2.61, p = 0.042), marginally significant DBP: Left dorsolateral prefrontal cortex (β = −2.79, p = 0.051 Greater caregiver burden with lesions on dlPFC

GCS, BDI, resting state scan, echo-­ planar imaging sequence

Depressive Sx and neuroadaptations: Reduced connectivity between the thalamus and the dorsolateral prefrontal cortex OLA Hyperactivation in right dlPFC Relative increases in OSU TBI-ID, dlPFC of TBI BDI-II, revised Hamilton psychiatric depressive subjects – amygdala as rating scale for depression, revised neuroimaging biomarker Hamilton anxiety rating scale, PTSD CL-S, WASI, WTAR, FSIQ-2, WAIS-III, D-KEFS, WMS-IV, standard methods using a modified version of a shell script generated by AFNI Promising results on 9 RCT – GCS, pain (VAS, DN4 McGill subjects – increased pain questionnaire), WM of dlPFC cortical excitability assessment with TMS (continued)

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Table 10.1 (continued) Authors N Sours et al. 71 (2015)

Instruments fMRI, ANAM

Nielsen et al. (2015)

1

rTMS

Ulam

26

EEG oscillations tDCS

Venkatesan 22 et al. (2015)

rs-fMRI (EPI)

Rodriguez Merzagora et al. (2014) 23 Leśniak et al. (2014)

fNIRS

Maller et al. (2014) Umeda et al. (2011)

AtDC 10″ vs. 25′

75

MRI, psych. Assess.

74

CT, MRI

Methods Code substitution delayed, code substitution, repeated simple reaction time, weighted throughput score HAMD

Results Reduced IH-FC compared to the control group within dlPFC (p = 0.013)

Changes in dlPFC with stilumation result in reduction of depressive Sx Decreased delta and Digit span subtests (WAIS-IV), subtests increased alpha – improved regulation of color-word cortical excitability – interference test of EEG as biomarker the delis-Kaplan executive function system Antiphase synchrony Cross-setional of dlPFC and longitudinal attentional focus analysis: Trail making test–part A,39 Wechsler adult intelligence scale-III digit Span,40 and the visual search and attention test (VSAT) dlPFC hemodynamic Inter-individual response during variations in working memory tasks cognitive performance Memory & attention Small statitistical tests difference between Tx and control in 6 out 8 cognitive (memory/ attention) Reduced diffusivity in Fractional dlPFC anisotropy (FA) index Right DLPFC was the 13 neuropsychological primary factor tests, intelligence influencing PM task quotient (IQ), performance general memory, attention and other higher cognitive functions (continued)

Methods and Materials

335

Table 10.1 (continued) Authors Marquez de la Platta, et al. (2011)

N 41

Methods Blood oxygenation level–dependent data, Pearson correlation coefficient

Results Less focused recruitment of DMN for dlPFC

62

Instruments Echo-planar and high-resolution T1-weighted images were acquired using 3-T scanners fMRI

Witt et al. (2010) Geraci et al. (2010)

ROI analysis

38

CT or MRI

4 ExFx tests and 2 ToM

Strangman 45 et al. (2009)

MRI/fMRI

Standard neuropsychological evaluations of memory, executive function, and language

rTMS

EP, neuropsychological assess.

Strangman 54 et al. (2009)

fMRI

HVLT-R

58

fMRI

Comprehensive assessment of WM

Decreased activity in right dlPFC Lesions in the left dorsolateral areas are associated with domain general processing limitations Decreased activity in dlPFC during verbal encoding – dlPFC appears to be decoupled from other active brain regions during strategic control – TBI: Combined digit span (for which P = 0.1) and the BNT (P = 0.06) Improved neural conduction in the pathway mediated the neurobehavioral improvements Activation of dlPFC confirms verbal learning and degree of activation equates to cognitive memory Defective activation of dlPFC

1

fMRI

Visual n-back task

Louise-­ Bender et al. (2009)

Vallat-­ Azouvi et al. (2007) Perlstein et al. (2007)

1

1464

Verbally mediated WM – dlPFC

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Results Seventy-five papers were reviewed, and the author noticed and named an emergence of six overarching themes: (1) targeted therapeutic strategies, (2) volume changes in dlPFC, (3) activity changes in dlPFC, (4) cognitive functioning, (5) genotype correlations, and (6) emotional processing and regulation. With targeted therapies for TBI being extensively researched, it seems plausible to replicate studies on people affected by both grief and dementia. Studies thus far on subjects with TBI are promising. To highlight a few study results in each of the identified themed areas, the author will present data from select research efforts. Hoy and colleagues investigated the effects of repetitive transcranial magnetic stimulation (rTMS) of the dlPFC, in 21 TBI subjects, resulting in significant improvements in working memory and executive functioning (2019). In another study, there were notable volume changes in dlPFC (Alves et al., 2017). Other studies indicated activity changes in dlPFC. In one study of 38 subjects, researchers discovered reduced fiber count in dlPFC–putamen tract, anomalous density, and integrity of ECN connectivity in right DLPFC–putamen pathway (Wu et al., 2019). A fourth theme that emerged was measured changes in cognitive functioning. For example, some researchers noted significant improvements in cognition: working memory (p  =  0.021) and executive function (p  =  0.029) in particular (Wu et  al., 2019). Conversely, for Neville and colleagues who exposed 30 subjects to 10 Hz rTMS, noted no significant cognitive functioning increase as measured by NPI and Trail Making Test Part B (2019). Algorithmic risk assessment for dementia development based on APOE genotype present in TBI subjects suggest possible correlative pathophysiology (Hocke et al., 2018). The sixth themed area I identified is emotional processing and regulation. In 30 male and female subjects, ages 19–44, affected by TBI with neuropsychiatric symptom comorbidity (e.g., suicidal thoughts, anxiety, posttraumatic stress disorder, sleep disturbance, behavioral problems, and cognitive dysfunction), there was a small effect size in reduction of depressive symptoms, and a moderate effect size in the reduction of the presence of neuropsychiatric symptoms (Rao et al., 2019). These data suggest the possible effectiveness of low-frequency right-sided (LFR) repetitive transcranial magnetic stimulation (TMS) of the right dlPFC in reduction of depressive and neuropsychiatric symptoms among TBI subjects.

Discussion With mounting investigations of the neuronal and functional impacts for TBI subjects and how this translates to increased dementia development in later life, there is a social justice obligation to ensure access to treatments for people without TBIs who present with similar neuronal imaging or behavioral traits. Grief subjects are one such example where data suggest changes in the functional anatomy of the

Discussion

337

dlPFC, potentially mirror that of what we see in TBI subjects. The significance of the functionality of the dlPFC is in systemic preservation, judgement, reasoning, and insight. The importance of the dlPFC with respect to systemic preservation highlights the need to move beyond a purely cognitive model of dementia detection, and into the body to capture a less fragmented view of living with sub-symptoms of dementia such as BPSD. Adding a history of trauma and complicated grief or PGD to the list of modifiable risk factors in later life dementia development might increase human flourishing. Increasing public knowledge on the relationship between trauma or unmetabolized grief and dementia development, as well as broadening early dementia detection methods are necessary. Measuring human flourishing may be one way of transitioning toward a systemic approach when seeking methods and developing measures for early dementia detection (Vander Weele, 2017). Neuropathologically informed biomarkers for grief are necessary for developing early dementia detection methods. Furthermore, consideration could include a thorough analysis of race-­ dependent biological mechanisms affected by grief. For example, racial differences are present in APOE ε4-positive participants, which has been linked to an Alzheimer’s disease (AD) risk variant (Morris et al., 2019). As we have discussed elsewhere in this book, this finding does not suggest a race-dependent disease differential component, rather when we consider race in the context of the concept of the epigenetics of trauma, we see cross-racial variations in grief (Post, 2021). When a person’s biochemistry is altered due to intergenerational trauma, the effects of stressors are metabolized differently in the body. Another area of consideration is in applying a trauma-informed lens to dementia development, detection, and diagnosis. Tracing a grief episode one step back to the trauma event is a novel approach to understanding dementia, and in particular BPSD. Adopting this perspective might illuminate the harrowing effects of historical trauma, which manifest as DNA restructuring and brain changes (Menakem, 2017; van der Kolk, 2014). In the absence of these considerations, we are left with a fragmented view of BPSD, one that is dehistoricized and racially uncontextualized. Moreover, by situating dementia development within the context of trauma, researchers might also consider the usefulness in measuring individual strengths and resilience (Windle et al., 2022; Peterson & Seligman, 2004; Smith et al., 2008 and Connor & Davidson, 2003). Moving beyond measuring cognitive functions to include other assessments and measures of whole-body well-being could offer a more complete picture and clearer representation of the roots of BPSD. While the studies included in this small mapping review provide promising evidence in support of considering prolonged, disenfranchised, and ambiguous grief as a risk factor in dementia development, this is only the beginning of inquiry into understanding the relationship. The possible neuronal, structural, and functional overlap in the dlPFC between people with a history of TBI and others with a history of trauma can inform a systemic approach to understanding dementia development, detection, and diagnosis.

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 rauma-Informed Dementia Health: On Policy T and Program Recommendations From March 2020 to September 2023, the United States faced the convergence of multiple costly public health concerns within a pandemic paradigm: Alzheimer’s disease and related dementias (ADRD), COVID-19, and trauma. These three concerns were shaped and constrained by the effects of stress on the larger operating system. Dementia health holds the promise of operating within this system from a position of a recognition of strengths, hopes, and a history of resilience. Given access to the appropriate support systems, the stresses of COVID-19 can serve as a model for how the process of healthy neuronal rewiring and central nervous system (CNS) restructuring might unfold. The malleability of neuronal rewiring and circuitry exaptation and expansion in the body–brain is magnified when exposed to stress (Shulman, 2020; McEwen, 2016). It is imperative that when stress is being interacted with in a therapeutic way, particularly with people living with dementia symptoms, that stress is monitored by a dementia health specialist. Research has suggested that memory increases can be facilitated by exposure to moderate levels of stress. Conversely, memory is suppressed when the body–mind system is exposed to a concentrated level of hormones precipitated by high stress events (Sapolsky, 2015). This creates a U-shaped dose– response curve. Thus, for people living with dementia, who experience the event of COVID-19 in any way other than their normal day-to-day happenings, the effects of their experience can be individually dosed in a way to facilitate memory growth.

Dementia Treatment As we have discussed at length throughout previous chapters in this book, the dominant nonpharmacological therapeutic approach in dementia treatment begins from a person-centered perspective (Kitwood & Bredin, 1992). As a review, this approach holds a commitment to holistic and integrative understandings of a person, taking into consideration histories, strengths, and uniqueness. In other words, a person living with dementia symptoms is more than the disease, diagnosis, or subsymptoms of BPSD. COVID-19 presented multiple impending threats, from virus transmission to attacks on overall livelihood, safety and security, and some people living with dementia symptoms, who also have a history of trauma, deserve the long overdue attention, and recognition of this history, as well as a validation of resilience for existing within a system that sometimes retraumatizes. Moreover, the rampant racial disparities in disease and diagnosis affliction represent an urge for dementia health to be racially, culturally, and trauma-informed. We’ have already discussed the racial inequities in dementia diagnosis among Americans elsewhere in this book. For example, Black Americans are twice as likely to receive

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a dementia diagnosis, yet only account for 13.6% of the total population (U.S. Census Bureau, 2023). Adopting a trauma lens to person-centered practices may not only honor a person’s history, such an approach also alleviates the potential of being retraumatizing. Now more than ever, with antipsychotic use rates among this population being substantially higher in 2020 than in 2018, as well as increasing evidence of ACE scores being a potential risk factor in dementia development, we need to consider the emancipatory power in incorporating trauma-informed therapies and practices into dementia health systems (Wang et al., 2020; Howard et al., 2020).

COVID-19 In 2020, the WHO committed to ensuring the mental health of people living with dementia and other neurocognitive disorders was not any more severely affected by the pandemic than it already had been (WHO, 2020). Creatively, the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) took a leading role in disseminating information on specific steps that health professionals could take in navigating the uniqueness of COVID-19 as experienced by people living with dementia. Although this information was widely available, systematically implemented therapeutic practices and the day-to-day lived experiences of people living with dementia varied. Due to an entire system being stressed, the much needed and well-developed information never made it into the hands of the intended recipients.

Race According to data from the Chicago Health and Aging Project (CHAP) study, which utilizes census data from 2020 and estimates for 2060, researchers determined that for people ages 65 and greater, and who are Black, there is a near double rate of diagnosis of AD diagnosis compared to White counterparts (Rajan et al., 2021). One possible reason for this can be attributed to recent research of possible connections between ACE scores and later life dementia development. Furthermore, numerous studies report similar racial disparities in children who have experienced at least one adverse childhood experience (ACE). Study results indicate black children experience at least one ACE at a rate of nearly double white children.

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Trauma As we discussed at length in previous chapters, there is a relationship between trauma and decreased neurocognitive development, diminished immune system responses, and severely undermined efficiency of physical health interventions. We discussed in the previous section some of the effects of grief. As a reminder, grief is a response or a coping mechanism to the effect of a traumatic event. If we are going to suggest dementia therapies and practices be trauma-informed, then we need a common understanding of trauma. You can refer back to our previous discussion definitional guidance, where individual trauma is defined as: “a result from an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being” (WHO, 2023; CDC; SAMHSA, 2014). Since our discussion of dementia health is placed on a global stage, it is necessary and appropriate to consider the cultural contexts within which events occur in order to gain a full understanding of trauma’s effects. When applying a trauma-informed, person-centered approach to dementia therapies, we must consider the event, the experience, and the effects of previous traumas. The event of COVID-19 was experienced by people differently and the resulting effects were just as varied. Therefore, as suggested by SAMHSA, there are four assumptions to consider when adopting a trauma-informed approach (2014). The field of dementia health strives for trauma-informed excellence, and therefore suggests therapies must: 1. realize the widespread impact of trauma and understand potential paths for recovery; 2. recognize the signs and symptoms of trauma in people living with dementia symptoms; 3. respond by fully integrating knowledge about trauma into policies, procedures, and practices; and 4. resist actively any actions that are retraumatization.

Methods Data were collected from 103 peer-reviewed journal article search returns on the phrases person-centered, dementia, and COVID using Boolean phrase AND. Time frame markers were March 2020 to March 2021. Article selection was limited to therapeutic studies in the United States. Therapeutic studies using person-centered care practices were analyzed for adherence to SAMHSA’s principles that guide a trauma-informed approach. Studies were rated on a Likert-scale in six areas: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment and choice; and cultural, historical, and gender issues.

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Articles that were excluded looked at other dimensions of cognition, and effects of COVID-19 or grouped people living with and without dementia into singe studies. For example, Khatoonabadi and colleagues looked at cognitive communication disorders that were diagnoseable following intensive care unit admission for a positive diagnosis of COVID-19 (2020). Other studies were omitted for not being focused on the effects of COVID-19, although were included in initial return of data for producing results during the time period of interest. One such study discussed the implementation of an oral hygiene program in care homes (Howells et al., 2020). Studies that reported data from countries outside of the United States were also excluded (Penfold, 2020). Any studies investigating the systemic reasons for COVID-19 transmission rates in long-term care community (LTCC) were also omitted.

Results Of the final seven reviewed studies, all highlighted the deleterious psychosocial effects of COVID-19 on people living with dementia symptoms (Lynn et al., 2020; Maulik et al., 2020; Troxel et al., 2020; Chu et al., 2020; Hung 2020, McGuire et al., 2020, Kilen et al., 2020). Within these data, it was observed that the majority of studies scored low on incorporation and adherence to SAMSHA’s trauma-informed approach. As was previously noted, while a few studies mentioned the magnifying effects of a current traumatic event on preexisting vulnerabilities, no study highlighted the growth or flourishing potential in the current traumatic event, by offering an opportunity for body–mind integration and space for people to metabolize previously unmetabolized losses.

Conclusions This section proposes policy and practice recommendations that can strengthen the field of dementia health. Recommendations can be adopted by employees of LTCC as well as community-based dementia practitioners who are adequately trained in trauma-informed dementia therapies and practices. Specifically, I extend three significant considerations for the development of dementia health and therapies within this field: 1. intake and assessment to include a screening of ACE score; 2. evaluation of (re)integrating current losses into current developmental and lifespan,phase; and 3. offering therapeutic support of current traumatic event (COVID-19) to metabolize past traumatic events in the context of current developmental and lifespan phase.

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In a post-pandemic era, we have many lessons learned and insight that now needs to be combined with action to create real and lasting change. The trauma histories of people living with dementia symptoms, who also experienced the effects of COVID-19 as stress need to be mitigated (Rittenberg, 2020). How? We have a human obligation to honor the strengths and resiliencies of people living with dementia symptoms.

Chapter Summary Clearly, the relationship between a history of trauma and later life dementia development is an area of inquiry that demands our attention. As was discussed above, through a review of data from two small studies, there is increasing evidence that suggests further inquiry is necessary for considering the addition of a history of trauma or ACEs to the list of modifiable risk factors in dementia development. Specifically, we reviewed the results of two studies conducted for the purpose of broadening our understanding of dementia symptoms from the perspective of trauma and grief exposure. Data in both studies were intended to provide further evidence for why measuring unmetabolized grief needs to be included and assessed in the field of dementia health. From a human flourishing perspective, measuring trauma histories is part of the process of acknowledging, validating, and integrating past events to support a person in creating a coherent present self-narrative. In the first study, I undertook the task of a mapping review of the literature investigating the dlPFC, the dopamine system, and its corresponding synaptic components in people with a history of TBI. An analysis of this data culminated in highlighting six themes I identified as corroborating evidence for why unmetabolized grief (or unintegrated trauma) is an emotional equivalent of TBIs. In the second study, I explored the potential for stress to be dosed in a way that leads to greater mind–body communication within the lived experience of people living with dementia symptoms. I used COVID-19 as a model of stress and how, when properly dosed, can lead to metabolizing previously unmetabolized traumas. Drawing from the extensive body of research on brain changes in people with a history of TBI and considering the mountain evidence on the effects of trauma on the mind–body system, we can see where either broadening the definition of TBI to include abuse and neglect or increasing the number of modifiable risk factors for later life dementia development to include a history of trauma or ACEs. The potential to synergize these findings for the advancement of early detection of dementia among people affected by complicated grief or a history of trauma is promising. Effective and inclusive policy and program recommendations for the field of dementia health will lead to greater human flourishing.

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Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Discuss evidence from the literature supporting a consideration of adding a history of trauma as a risk factor in dementia. 2. Describe the significance of race and culture and why dementia grief needs to place therapies within this context. 3. Apply an understanding of how dosing stress can support a healthy functioning brain–body relationship.

Further Inquiry What happens when the body–brain relationship is taxed by grief and exists within a system (LTCC) that is stressed, within a system that is stressed (US healthcare), within a system that is stressed (global effects of COVID-19)? What lessons were learned from COVID-19 that can shape the field of dementia health?

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Penfold, J. (2020). Has the COVID-19 crisis changed community nursing in the UK forever? Primary Health Care, 30(3), 13–15. Perlstein, W.  M., Cole, M.  A., Demery, J.  A., Seignourel, P.  J., Dixit, N.  K., Larson, M.  J., & Briggs, R. W. (2007). Journal of the International Neuropsychological Society : JINS, 10(5), 724–741. ISSN: 1355-6177; Publisher: Cambridge University Press; PMID: 15327720. Peterson, C., & Seligman, M. E. P. (2004). Strengths of character and well-being. Journal of Social and Clinical Psychology, 23, 603–619. Peterson, K., Veazie, S., Bourne, D., & Anderson, J. (2020). Association between traumatic brain injury and dementia in veterans: A rapid systematic review. Journal of Head Trauma Rehabilitation, 35(3), 198–208. Post, R.  M. (2021). The epigenetic connection to black disparity. The Journal of Clinical Psychiatry, 82(3), 20com13858. Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Aslan, M., Goodkin, K., Raphael, B., Marwit, S. J., Wortman, C., Neimeyer, R. A., Bonanno, G. A., Block, S. D., Kissane, D., Boelen, P., Maercker, A., Litz, B. T., Johnson, J. G., First, M. B., & Maciejewski, P. K. (2009). Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med, 6, 6. Rajan, K. B., Weuve, J., Barnes, L. L., McAninch, E. A., Wilson, R. S., & Evans, D. A. (2021). Population estimate of people with clinical AD and mild cognitive impairment in the United States (2020-2060). Alzheimers Dement, 17, 1966–1975. Rajkumar, A. P., Bidkhori, G., Shoaie, S., Clarke, E., Morrin, H., Hye, A., Williams, G., Ballard, C., Francis, P., & Aarsland, D. (2020). Postmortem cortical transcriptomics of lewy body dementia reveal mitochondrial dysfunction and lack of neuroinflammation. The American Journal of Geriatric Psychiatry : Official Journal of the American Association for Geriatric Psychiatry, 28(1), 75–86. ISSN: 1545-7214. Rao, V., Bechtold, K., McCann, U., Roy, D., Peters, M., Vaishnavi, S., Yousem, D., Mori, S., Yan, H., Leoutsakos, J., Tibbs, M., & Reti, I. (2019). Low-frequency right repetitive transcranial magnetic stimulation for the treatment of depression after traumatic brain injury: A Randomized Sham-Controlled Pilot Study. The Journal of Neuropsychiatry and Clinical Neurosciences, 31(4), 306–318. ISSN: 1545-7222. Rigon, A., Voss, M. W., Turkstra, L. S., Mutlu, B., & Duff, M. C. (2019). Functional neural correlates of facial affect recognition impairment following TBI. Brain Imaging and Behavior, 13(2), 526–540. ISSN: 1931-7565. Rittenberg, E. (2020). Sewing masks—Resilience in the face of covid. The New England Journal of Medicine, 383(26), 2497–2498. Rodriguez Merzagora, A. C., Izzetoglu, M., Onaral, B., & Schultheis, M. T. (2014). Verbal working memory impairments following traumatic brain injury: An fNIRS investigation. Brain Imaging and Behavior, 8(3), 446–459. ISSN: 1931-7565. Sapolsky, R.  M. (2015). Stress and the brain: individual variability and the inverted-U. Nature Neuroscience, 18, 1344–1346. https://doi.org/10.1038/nn.4109 Schneck, N., Tu, T., Bonanno, G. A., Shear, M. K., Sajda, P., & Mann, J. J. (2019). Self-generated unconscious processing of loss linked to less severe grieving. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, 4(3), 271–279. ISSN: 2451-9030. Shulman, L. (2020). Emotional traumatic brain injury. Cognitive and Behavioral Neurology, 33(4), 301–303. Skau, S., Bunketorp-Käll, L., Kuhn, H. G., & Johansson, B. (2019). Mental fatigue and functional near-infrared spectroscopy (fNIRS) – Based assessment of cognitive performance after mild traumatic brain injury. Frontiers in Human Neuroscience, 13, 145. ISSN: 1662-5161. Smith, B. W., Dalen, J., Wiggins, K., Tooley, E., Christopher, P., & Bernard, J. (2008). The brief resilience scale: Assessing the ability to bounce back. International Journal of Behavioral Medicine, 15(3), 194–200. Sours, C., Rosenberg, J., Kane, R., Roys, S., Zhuo, J., Shanmuganathan, K., & Gullapalli, R. P. (2015). Associations between interhemispheric functional connectivity and the Automated

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Chapter 11

Limitations, Shortfalls, and Future Recommendations: On Therapies, Policies, and Programs

Key Points • What is the significance in acknowledging limitations? • Limitations to using qualitative research methods. • In what ways will heart rate variability legitimize dementia health?

As thorough as I have attempted to be in conveying a thoughtful and comprehensive understanding of dementia, gathering data to support the clinical relevance of dementia grief, providing a detailed outline for reproducibility, and encouraging collaborative and concerted efforts to collect a unified body of data when implementing the proposed therapeutic intervention, there do exist limitations that should be considered in future dementia grief research endeavors. This chapter offers an in-depth discussion of limitations, shortfalls, and future considerations. We will not only discuss limitations to the proposed therapy model of Dementia Grief Therapy (DGT) but also explore limitations with my policy and program recommendations. To highlight, some general areas that should be considered in future research are systematic administration of valid and reliable grief and trauma measures, measuring loss integration from initial presentation of BPSD or NPS, and measurements of changes in the degree of human flourishing or increasing health equity. Specifically, we will discuss the following six limitations: researcher bias, generalizability, oversimplification, measuring errors, applicability, and confidentiality.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_11

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Researcher Bias To minimize researcher bias, I attempted to stand my own findings up against other study findings. Although I made a concerted effort to be extensive and thorough in my combing of the literature, certainly there remain significant findings of which I remain unaware. I look forward to continuing my research efforts, broadening my knowledge base and hope to maintain a commitment to not knowing. In other words, in the process of exclaiming I know, I already do not know. Making a claim of knowing severely limits my ability to approach any subject matter anew, fresh and with curiosity. At the same time, these characteristics inform my bias and even the very therapy model I present herein. My strong adherence to existential feminist perspectives blinds me to potentially seeing other relevant data. Additionally, a convincing belief that we each hold the potential to add kindling to our own internal fire and allow this to glow and radiate outwardly might not resonate with everyone. Western psychology has a history of separating the mind and the body into two distinct units. Coming from a yogic science perspective, the body and mind are one system that develops its own capabilities. In Sanskrit, yogaanalena sandahya ghatashuddhim samaacharet refers to this process of creating systemic balance, coherence, and synchronicity. From a relational perspective, all systems maintain a secure relationship. These beliefs frame my understanding of data I have collected over the years. Another consequence of holding human potential as foundational to global harmony results in a potential of a skewing of data. When I am interpreting results from study participants, it is possible that I favor the potential capacity versus presently defined capacities. It is for these reasons that I have attempted to utilize and communicate clear procedures for data collection. For example, in the coding and analysis process, I remove names and look purely at raw numbers such as physical output and grief statistics. Nonetheless, my interpretations from these data most likely will differ from another researcher’s observations and analysis. Future research might want to consider the incorporation of a fitness tracker that measures heart rate variability (HRV). This variable has been used to record rates of recovery as well as cardiac health. Cardiac health is directly linked with a person’s capacity to metabolize grief or trauma. The link between cardiac events and bereavement is well established. In a foundational study, bereaved and non-bereaved participants’ HRV was measured at 2 weeks and 6 months’ time intervals (Buckley et al., 2012). The time frame was based on the occurrence of death for bereaved participants, whose HRV was lower at 2 weeks than it was at 6 months. For non-bereaved participants, HRV remained constant. Lowered HRV translates to a weakened relationship between the parasympathetic nervous system and heart health. A diminished parasympathetic nervous system can overly tax the cardiovascular system (McCraty et  al., 1995). Including HRV measures in people experiencing dementia grief can add a richness to DGT.

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Generalizability A thorough examination of case studies offers incredibly rich, detailed, contextualized, and interesting data. At the same time, it is very possible the findings presented in any one of the case composites may not be generalizable to a larger population. As I have emphasized throughout, the lived experiences with dementia grief are uniquely attached to the individual who creates those experiences. As such, it may be that findings are not representative of others living with dementia grief symptoms. Additionally, it is sometimes impossible to discern whether the benefits reported or inferred can be unequivocally attributed to the confluence of therapeutic components of DGT. It is for these reasons that I propose one possible step in legitimizing the field of dementia health is the precise and uniform inclusion of valid and reliable measures of health and well-being. Throughout this book we have discussed multiple variables. All these variables, concepts, and constructs are incredibly interesting and important. I attempted to give adequate attention to an idea when I introduced it. And yet, limited by space and intelligence, there are some constructs I was not able to fully develop. For example, within our discussion of attachment dimensions I introduced the loss–love and sympathetic–parasympathetic axis. It is very plausible that with increased knowledge and intellectual capacity, these concepts can be more fully developed. Another area that needs refinement is the application of a yogic understanding of dementia grief symptoms. This process of refinement necessitates improved awareness of nuances of yogic science. Increased awareness of nuances comes from “a journey of the self, through the self, to the self” (Bhaktivedanta Swami Prabhupāda, 2008). This journey must not be rushed. With respect to participants’ sharing their experiences, it is quite possible there were misunderstandings in how I interpreted their journey with dementia grief and as a result, the validity of the data may be less strong than it could be. Lastly, all case composites draw from dementia grief experiences rooted in a US-based living environment. What differences, might we see if DGT is applied to a Chinese population living in Beijing compared with people living in Quian’an in rural Hebei Province in the foothills of the Yan Mountains? For these reasons, it is plausible to believe that the integrity of generalizability of findings is compromised. Creating a globalized network of data collection will strengthen DGT and increase the degree of generalizability.

Oversimplification In Chap. 10, we reviewed data consistently collected for the purpose of two related, yet different studies. In Study 1, we explored the neuronal activity overlap in dorsolateral prefrontal cortex (dlPFC) among people affected by grief, BPSD, PGD or TBI. In Study 2, we engaged in a rich discussion of recommendations for policy and

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therapeutic development. In both studies, the design was created at the beginning, prior to any data collection. By its very design, based on search terms, I narrowed my attention and potentially omitted some relevant data. These study designs limited my flexibility to investigate insights and revelations discovered along the journey of analyzing data. One major result of the methods employed in both studies is I might have presented an oversimplification of the findings. It is my hope that even if there is a correlation between overlapping areas in the brains of people experiencing different events (TBI, grief, BPSD, and PGD) that I am not suggesting a casual relationship.

Measuring Errors In Chaps. 7, 8, and 9, I presented three composite cases. Within these cases I presented a variety of data indicating changes in physical output and grief processes. I suggested that there might be a relationship between physical activity and self-­ reported grief. In the beginning of DGT development, I would ask people, “on a scale from 1–10 where is your level of grief today?” While my hope was to obtain a numerical value of their grief and generate a history of their experience with their grief, when a participant once responded through sobs, “What is grief?” it is very possible this was a measurement error. Additionally, for some participants consistency of meeting time was important and supportive of their journey. For example, for Masahiro, every Tuesday at 10 a.m. provided him with structure and a connection to the concept of chronological time, both of which he expressed a desire for and valued highly. Asking him at this time each week can be an example of coverage or nonresponse errors. His response was limited to a specific time. Asking at other times of day may have influenced his response. Additionally, asking participants this type of questions relies on retrospective analysis where people reflect on other times throughout the day and arrive at a value of their grief. For this reason, tested, reliable, and valid instruments are more useful.

Applicability Research, much like the therapy process, can hold as an aim to move from insight to action. Insight is only valuable when it is realistic and can be applied to real-­ world scenarios. Similarly, research recommendations to inquire further on an area, therapy procedures, or unrealistic field developments are annoying at best and possibly even damaging. As thorough as I have attempted to be in acknowledging global variations and settings within which DGT can be adopted, there simply are settings about which I am naïve. The extensive experience and unique set of knowledge that I bring to the development and application of DGT may suggest a standard

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of professionalization that is highly rigorous and unattainable for vast reproducibility and development of dementia health practitioners. My specificity of collective knowledge, drawing from multiple areas of inquiry, may present a hindrance to the wide range of applicability of my proposed development of dementia health as a field. Encouraging people to be educated in multiple fields and relying on a creative ability to introduce ideas to participants might limit who is interested in entering dementia health. Policy and program recommendations that align with specifications outlined in the GUIDE Model are feasible. In previous chapters, we discussed this model payment structure, which is projected to be implemented in the United States on July 1, 2024. Dementia health and DGT appropriately align with crucial aspects of the GUIDE Model. For example, the model indicates that participating providers must include screening that measures health-related social needs (2023). Assessments of grief and trauma history enhance this screening protocol by improving health equity. With respect to the various components of DGT, I wonder if similar outcomes can be achieved with a different arrangement of therapeutic necessities. In other words, while the collaborative approach is vital, must a person also venture into the woods with participants? If a person offers services in an office, would we see similar results in similar time frames? If yogic principles are removed from DGT, will grief metabolizing occur at a similar rate as was presented in the case composites? It is always important to practice within your professional scope, remaining competent and confident. Additionally, undertaking intensive yogic studies or expanding the knowledge of life (in Sanskrit Ayurveda) does not speak to everyone or resonate within everyone’s body. These areas of knowledge can sometimes seem to not fit within a Western medical model or CMS fee schedule, thereby severely limiting countries and communities within which dementia health or DGT can be implemented. The development of DGT has undergone many iterations from 2001 until the present day. It has been through trial and success that has led to the conceptualization of the therapeutic framework presented as DGT. Although there is a vastness in applicability to various participant populations, it has only been more recently and through specific data collection with participants ages 65 and greater and who are living with a diagnosis of major neurocognitive disorder that this approach has been used and tested. Nonetheless, in the beginning of therapeutic development, iterations of this approach were utilized with males ranging in age from 19 to 54, who cohabitated in a community home and were living with comorbidities. Most of the men were diagnosed with severe schizophrenia and substance use disorder.

Confidentiality Composite vignettes were used to clearly communicate important constructs or concepts discussed throughout this book. Additionally, three case composites were offered to understand the various components of DGT systematically and

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thoroughly. Because personal health has historically been a sensitive topic, my hope is that any time I anonymized data, it was done so in a way that completely obscured the identity of participants. It is my sincere hope that in no circumstances throughout this book is any reader able to induce an actual person.

Chapter Summary Even the most highly regarded, valid, and strong research has limitations. In the previous pages, I have attempted to dispel all beliefs that I know. I have so much to learn. Indeed, I have applied rigor and discipline in my studies and have attempted to be concise, thorough, and precise in my communication of findings. The data presented throughout this book has been generated from highly reliable sources. Nonetheless, I believe devoting space to acknowledging limitations in researcher bias, generalizability, oversimplification, measuring errors, applicability, and confidentiality are necessary and important. My hope is that in your brilliant reading, interpreting and synthesizing of the data presented throughout this book, you are motivated to engage with dementia grief. There are several ways this engagement might manifest. In the following chapter, we will explore some areas that will leave you feeling satiated, confident in your abilities to metabolize the ideas contained throughout this book, and enthusiastic about preparing the next inquiry into dementia grief.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Explain three reasons why it is important to acknowledge limitations. 2. Discuss some main limitations to relying on qualitative data. 3. Expand on the idea of HRV legitimizing dementia health.

Further Inquiry Adequate translations of dementia grief are necessary for appropriate interpretations of these experiences across the globe. In what cultures is dementia grief completely absent?

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References Bhaktivedanta Swami Prabhupāda, A. C. (2008). The Bhagavad-Gita as it is: With the original Sanskrit text, Roman transliteration, English equivalents, translation and elaborate purports. The Bhaktivedanta Book Trust. Buckley, T., Stannard, A., Bartrop, R., McKinley, S., Ward, C., Mihailidou, A. S., Morel-Kopp, M. C., Spinaze, M., & Tofler, G. (2012). Effect of early bereavement on heart rate and heart rate variability. The American Journal of Cardiology, 110(9), 1378–1383. Guiding an Improved Dementia Experience (GUIDE) Model. (2023). Centers for Medicaid and Medicare. Available at https://www.cms.gov/priorities/innovation/innovation-­models/ guide#:~:text=Through%20the%20GUIDE%20Model%2C%20CMS,access%20to%20a%20 support%20line McCraty, R., Atkinson, M., Tiller, W. A., Rein, G., & Watkins, A. D. (1995). The effects of emotions on short-term power spectrum analysis of heart rate variability. The American Journal of Cardiology, 76, 1089–1093.

Chapter 12

Conclusion

Key Points • Understanding dementia grief experiences from racially, culturally, and community informed perspectives. • Framing dementia symptoms within a context of health rather than deficits. • Individual changes that can make a difference in what it means to live with dementia symptoms.

Some of the detrimental effects of trauma and unmetabolized grief on the body are a result of a decrease in oxygen to organs that are of primary importance to optimal thriving. Similarly, limiting access to dementia grief therapies suffocates global thriving and harmony. We started this journey by entering into an active and ongoing conversation about the global need for innovative approaches to how we conceptualize a diagnosis of dementia and how this then informs the quality of life while living with dementia symptoms. From individuals to nations, we each hold a unique set of capabilities, awareness, and motivations. I shared in the beginning of our journey down this rabbit hole, that my greatest dream is, as a connected and caring global community, we will begin to think in terms of dementia health as opposed to dementia deficits. Early in our adventures, we discussed the development of a new field: dementia health. Dementia health is comprised of individualized considerations of whole system (body–mind) well-being. The conversation then moved to asking: How might the lived experiences of a person with a dementia diagnosis be different when framed in terms of dementia health? And, to what extent must race, culture, and community be considered when assessing dementia grief experiences? Throughout our conversation, we have explored the significance of expanding the list of modifiable risk factors for dementia development to include trauma histories and prolonged or complicated grief responses. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7_12

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I have proposed adopting a culturally aware complicated mourning lens to offer another perspective in understanding dementia symptoms and behavioral and psychological symptoms of dementia (BPSD). Three models, medical, integrative, and rights based, offered context within which to consider the concepts of complicated mourning and BPSD. We also explored why highlighting agency and identity are important factors within dementia health. To understand the sociocultural and sociostructural influences on shaping the lived experience with dementia symptoms, we applied a social justice framework to the process of accessing health promotion resources within a globalized and connected society. With the knowledge, insight, and awareness we have gained on our adventures down the rabbit hole, filled with rich explorations in dementia health, mind–body therapies, and unmetabolized grief, we can see where changes in three areas are possible. Initiating change informed by WHO’s Global Action Plan on Dementia (GAP) at the individual (micro), local or regional (meso), and national (macro) levels can create a world as beautiful as the garden Alice (in Wonderland) saw at the end of the small passage when she was inside the rabbit hole and peering through the door. Broadly speaking, during our adventures throughout this book, we considered shifts at the micro level (individual internal shifts in attachment dimensions), the meso level (access to community dementia grief resources), and the inclusion of a history of traumatic experiences at the macro level (in the development of trauma-­ informed dementia health infrastructure). It is the culmination of change within these three areas that can lead to a global recognition of strengths or capabilities – from local to national – leading to greater systemic flourishing, and a more socially just global society. We will now review changes within each area separately and conclude with recommendations for next steps.

Individual (micro) The likelihood that we each have a history of trauma undoubtedly parallels the findings discussed throughout this book. Therefore, we have a responsibility, to ourselves and to the collective well-being – the optimal function of human harmony – to metabolize our own traumas. Any areas of our life where we have applied a complicated mourning response, we can interact with these internal relationships and shift the attachment dimensions. We can move toward developing more secure internal relations and consequently, not only minimize ours and others suffering but also increase our flourishing. For example, let’s say we have access to a memory of how consuming large amounts of sugar makes us feel calm. We also have developed an association between how consuming sugar at times when we are feeling less than optimal creates feelings of comfort and security. At some later time when we are recovering from a car accident, we consume potato chips, beer and, an ice cream sandwich. This is our attempt to create equilibrium in our body. Hormones have been released from the stress of the car accident and this sends a signal to our body that eating

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these foods will create comfort. Each of these food items contains carbohydrates, which raises our blood sugar. In a system that is experiencing elevated blood sugar (stress), a secondary spike in blood sugar (food) forcefully impacts the functioning of our kidneys. Although we might momentarily feel good, we also experience a low. In a relational context we are seeking the benefits and comforts of a secure relationship, and yet, we inadvertently create systemic tensions and insecure internal relationships. One example being between the kidneys and brain. Consuming these foods also stimulates a release of serotonin. As we may recall from our previous discussions on exercise and nature, serotonin is released when engaged in physical activity or exposed to nature. When dementia symptoms are understood from the perspectives of dementia health, mind–body therapies, or unmetabolized grief, then the effects on the body are different than they are currently experienced. For some people living with dementia symptoms, the body is in a heightened state of stress. This stressed body is interacting with a structure of some of the current dementia practices, adding a second layer of stress. This body is also shaped by societal conceptualizations of what it means to live with dementia symptoms, which can add a third layer of stress. When we begin from a place of holding human flourishing as a valuable process and investigate internal relations, one result is all systems operating from a secure base. Refer Figs. 6.2 and 6.3 to see the concept of interconnected internal attachment dimensions interfacing with other processes. One important concept that spans the micro to macro is our relationship with death. It is important to acknowledge this component of the dementia grief process.

Local or Regional (meso) We have discussed throughout this book that conscious and unconscious aversion to integration is an attempt to absolve us of our own suffering. Being the considerate, respectful, and genuine human – one who is invested in global health equity and committed to social justice – you can apply any of the seven areas laid out in the GAP to the internal environment. At minimum, we must continue to shift the very language we use to conceptualize dementia symptoms away from despair and toward dignity. We can adopt similar linguistic choice in how we describe people living with dementia symptoms away from isolation and toward intimacy. These linguistic shifts are maximizing the strengths of individuals as well as communities by appreciating and celebrating the lived experience with dementia symptoms. These differences will be felt by those alive today and in generations to come. Throughout our conversation, we have emphasized where adopting an individualized approach to understanding the lived experiences with dementia is necessary. One person living with dementia symptoms may thrive in an environment where there is a vast array of stimuli. Another person may be repelled and agitated by an environment full of conversations, multiple media activations such as a radio talk show, TV, and music simultaneously playing. These differences in ideal thriving conditions have less to do with each of these people living with dementia symptoms

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and more to do with their unique personalities, histories, and strengths. We must implement programs and policies that are informed by sensitivities to local and cultural contexts and begin from a foundation of human dignity.

National (macro) For our globalized society to maintain forward momentum by walking toward flourishing, we must continue to acknowledge, validate, and honor the dementia grief some people are living with. These global shifts can take some time to fully mature. Simultaneously, we can make a difference today by committing to metabolize our own unmetabolized traumas. Creating synchronicity in our body–mind systems will support the synchronicity of other people’s systems. We are united in our grief and in our joy. Both can exist together. The individual and internal variations we have just explored also exist within the meso and macro levels of thriving. Extending appreciation for these differences begins the process of developing culturally relevant, community situated, and individually specific policies, programs, and therapies. Of the 194 member states of the WHO’s GAP, 39 countries have a dementia plan in place. We must continue the conversation on global efforts aimed at naming dementia a public health priority and increasing awareness, risk reduction, and prevention. Ignoring trauma histories render an incomplete and fragmented image of a dementia diagnosis. If indeed unmetabolized grief, or a traumatic emotional injury (TEI), has as deleterious of effects on the mind–body functioning as is increasingly evidenced by TBI, then in line with GAP, the relationship between grief and dementia must be more thoroughly investigated. For proper research findings to emerge, investigations and inquiries into this area need to be appropriately funded. A two-­ fold recognition that the majority of dementia diagnoses are increasingly among people living in low- and middle-income countries and a person’s experiences living with dementia symptoms is optimal when access to supportive services enters into the picture early in the pre-diagnosis process leads any reasonable person to conclude that global enforcement is necessary. A redistribution of funding that allows for adequate access to dementia health program development, implementation, and service delivery is hallow, unless funding also ensures flexibility to meet the unique demands of local, regional, and national differences. One area that holds tremendous promise is yogic science and creating an individualized approach to thriving with dementia. Additionally, adopting an Ayurvedic medicine lens may offer promise for balancing the body’s systems, particularly if dementia symptoms are an indication that the body’s systems (with a history of trauma or complicated grief) are stuck in a loop of retraumatizing. One piece of evidence of a system under repeated stress is accumulated inflammation. We explored in several chapters the effects of inflammation from impeding the digestive system to diminishing the functionality of the respiratory system. Ayurvedic medicine suggests one way of regulating the respiratory system is to synchronize the

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sleep–wake cycle with the natural rhythms of nature. Although we did not cover this approach in great detail in this book, I left much to be desired for future inquiry. We can turn to some of the leadership in India to observe the pioneering individualized programming that has been drafted. Tremendous efforts are underway to minimize the suffering of living with dementia symptoms and maximize the realization of untapped potential within people living with dementia symptoms. For example, eight districts in the state of Karnataka have drafted policies that guide operations for innovative service delivery (in Hindi Gruha Arogya) by offering screening services at the door of people’s homes. We can also borrow from the extraordinary work Japan is doing, beginning with budgeting the equivalent of more than US$ 210 million toward dementia task forces, policies, and creative programs. Most remarkable of all is the exemplary leadership of Japan that is committed to include members in the community who live with dementia symptoms in drafting government policy and sitting on important committees. As a nation, Japan is devoted to making a loving, peaceful impression on the experience of living with dementia symptoms. We can also learn from a pilot program in the United States (GUIDE model), with implementation plans for Summer 2024, that seek a unique, creative, and flexible approach to payment for key supportive services for people living with dementia symptoms. The deliberate efforts in dementia health of Japan, India, and United States are models that can motivate other countries to create and test programs, policies, and interventions.

Next Steps It is my hope that as we conclude our journey for now, you feel motivated to incorporate at least one shift in language usage. Language shifts that prioritize the inherent value of people living with dementia symptoms help diminish barriers and dissolves stigmas. The stigma of living with dementia symptoms is embroiled in individuals, cultures, and institutions and presents massive challenges to all people feeling valued and living in harmony. Beginning from a place of dementia health may translate into people living with dementia symptoms recognizing their own strengths and capabilities. A recognition of individual strengths and capabilities can then lead to greater individual human flourishing, which may cascade over into a more socially just society. A society in which everyone can thrive. Just as Alice (in Wonderland) sat along the riverbank with her sister and extended curiosity toward the White Rabbit in the waistcoat, perhaps we can continue to extend curiosity toward dementia grief. At this point in our journey, it should be evident that more attention must be paid to integrating losses. For policymakers reading this, please commit to increasing funding for grief-informed therapies. For practitioners, please consider including grief and trauma questionnaires in your dementia screenings. The inclusion of grief assessment in dementia health screening is an absolute must if we are going to live

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in a world where we continue to interrogate the dementia narrative by shifting from tragedy to thriving. For people who are currently engaged in creating a coherent present self-narrative, by discovering or creating safe comfortable homes for all of life’s losses, keep up the beautiful practices. May we all continue to feel valuable.

Learning Objectives With comprehension of details in this chapter, you will be able to: 1. Describe dementia grief experiences from racially, culturally, and community informed perspectives. 2. Discuss the potential policy development from framing dementia symptoms within a context of health rather than deficits. 3. Name three changes you want to make that will have an impact on what it means to live with dementia symptoms.

Further Inquiry What is needed for Ayurvedic practices to be embraced by people unfamiliar with the traditions of the medicine? How can more cross-country collaborations happen that strengthen people living in communities in each country? How might new therapies and interventions develop from a representative study population of people living with dementia symptoms?

Index

A Agencies, 5, 19, 21, 35, 36, 39–45, 59, 83, 90, 103, 119, 122, 125, 129, 133, 135, 139, 151, 152, 162, 166, 172, 175, 196, 210, 234, 237–242, 253, 260, 261, 289, 290, 292, 294, 296, 301, 317, 360 Aging, 9, 11, 23, 40, 41, 47, 50, 51, 86, 101, 122, 126, 130, 131, 134, 135, 138, 164, 174, 204, 209, 212–215, 217–220, 231, 235–237, 250, 255, 260, 261, 318 Applicability, 21, 25, 26, 45, 102, 151, 162, 192, 259, 351, 354–356 Assent, 23, 192, 203–205 Assessments, 5, 22, 42, 53, 71, 102, 113, 127, 131, 136, 140–148, 150, 169, 170, 175, 198, 210, 222–226, 230, 233, 236, 254, 260, 286, 304, 307, 309, 317, 321, 328, 336, 337, 341, 355 Attachment dimensions, 23, 50, 98, 176, 209, 212–219, 231, 236, 260, 261, 304, 305, 353, 360, 361 Autonomy, 23, 58, 84, 114, 121, 134, 137, 145, 149–150, 157, 158, 172, 191–193, 196, 197, 199, 203–206, 221, 231, 326 Ayurvedic medicine, 26, 362 B Behavioral and psychological symptoms of dementia (BPSD), 13, 15, 19, 21, 22, 24, 26, 35–44, 56–59, 67–70, 75, 79, 80, 87–89, 91–94, 96, 102–104, 113,

129, 141, 145, 152, 156, 157, 160–162, 167, 170, 172, 174, 210, 229, 235, 238, 258, 259, 327, 328, 337, 338, 351, 353, 354, 360 Beneficence, 23, 191, 192, 197, 199, 200, 203–206, 221 C Capabilities approach, 39, 46, 229, 235, 240, 259 Cognitions, 24, 56, 71, 79, 87, 93, 131, 141, 146, 155, 161, 307, 336, 341 Collaborators’ orientation, 24, 210, 234, 260 Confidentiality, 23, 24, 26, 191, 199–202, 205, 285, 311, 351, 355–356 D Death, 4, 41, 68, 113, 202, 209, 279, 288, 305, 328, 352, 361 Decision making capacity, 23, 192, 203–205 Dementia, 4, 35, 67, 113, 193, 209, 290, 317, 325, 351, 359 Dementia grief, 4, 19, 21–24, 26, 27, 67, 68, 86, 94–104, 113, 158, 205, 209, 210, 256, 343, 351–353, 356, 359–364 Dementia grief models, 88, 99, 102–104, 173 Dementia grief therapy (DGT), 19–26, 35, 45, 58, 59, 87, 98, 140, 146, 151, 153–155, 168, 169, 191, 192, 196, 205, 209–261, 302, 311, 351–355

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 A. Ione, Dementia Grief Therapy, https://doi.org/10.1007/978-3-031-55440-7

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366 Dementia health, 3–5, 19–26, 35, 36, 38, 39, 43–46, 48–50, 53–60, 67–104, 113, 115, 118, 119, 122, 127, 129, 132, 134, 136, 139, 140, 144–147, 157, 170, 176, 191, 192, 197, 199–203, 205, 206, 209, 217, 219, 221, 222, 225, 234, 236, 244, 256, 257, 285, 305, 325, 326, 338–343, 351, 353, 355, 356, 359–363 Dementia mourning model, 22, 67 Dementia screenings, 21, 26, 70, 124, 363 Dementia symptoms, 3–5, 7, 8, 11–24, 26, 28, 36–40, 43–47, 50–52, 55, 57–60, 68–76, 79–82, 84, 94–98, 101–104, 113, 115–139, 145, 146, 148–150, 154, 156, 160, 168–170, 173, 175, 176, 191, 195, 196, 199, 201–203, 205, 209, 210, 212, 217, 218, 221, 228, 232, 234, 236, 238, 240, 244, 246–248, 250, 251, 255, 258–260, 325, 326, 338, 340–342, 359–364 Dorsolateral pre-frontal cortex (dlPFC), 25, 69, 325–328, 336, 337, 342, 353 E Empowerment, 4, 19, 21, 35, 45, 46, 59, 116, 157, 170, 191–194, 205, 217, 247, 311, 340 F Five wishes, 23, 192, 203–205 Four box method, 23, 191, 197–198, 205 G Generalizability, 26, 351, 353, 356 Global Action Plan on Dementia (GAP), 22, 25, 26, 35, 48, 113–115, 118–124, 134, 140, 159, 175, 257, 328, 360–362 Global grief, 67–104 Grief, 4, 35, 67, 140, 192, 209, 281, 300, 305, 325, 351, 359 Grief assessment, 26, 42, 363 Grief questionnaires, 21, 26 Grounding work, 24, 210, 234, 251–253, 260, 299 H History of a diagnosis of dementia, 25, 40, 43, 77, 79, 94, 148, 157, 167, 174, 219, 236, 359

Index I Identities, 4, 5, 7, 18, 19, 21, 27, 35, 38, 40–45, 59, 79, 83, 88–90, 92, 93, 98–100, 102, 103, 155, 170–172, 175, 192, 193, 202, 210, 226, 234, 237–239, 242, 253, 289, 312, 317, 320, 356, 360 India, 8, 22, 48, 67, 82–86, 104, 113, 114, 123–132, 140, 175, 286, 363 Informed decisions, 23, 192, 204 Integrating unmetabolized traumas, 26 Integrative model, 20, 37, 38 J Japan, 22, 48, 56, 67, 82–84, 86, 104, 113–123, 140, 158, 162, 175, 273, 275, 279, 363 L Liberatory critical consciousness, 21, 35, 45, 59 Life, 4, 36, 68, 113, 193, 209, 276, 287, 308, 325, 355, 359 Loss, 4, 39, 68, 113, 193, 209, 273, 285, 305, 327, 351, 363 M Measuring errors, 26, 351, 354, 356 Medical model, 20, 36–38, 121, 149, 259, 355 Modifiable risk factors, 6, 11, 18, 21, 26, 35, 46–50, 55, 57, 59, 117, 118, 126, 127, 135, 221, 325, 327, 337, 342, 359 Multimorbidity, 21, 35, 40–45, 59, 93 N Nature, 4, 7, 11, 24, 42, 56, 58, 81, 97, 98, 118, 148, 164, 210, 221, 229, 230, 232–234, 237, 239, 243, 245, 246, 249–250, 260, 273, 283, 285, 298, 299, 304, 305, 312, 321, 361, 363 O Outcomes, 24, 45, 46, 54, 56, 57, 69, 81, 84, 91, 93, 99, 114, 131, 135, 138, 146, 154, 157, 169, 170, 222, 223, 226, 273, 278–280, 285, 293–301, 305, 316–318, 326, 328, 355 Oversimplification, 26, 351, 353–354, 356

Index P Physical activities, 24, 48, 118, 119, 131, 135, 159, 210, 221, 234, 236, 247–249, 260, 273, 278, 285, 287, 291, 293, 296, 297, 299–302, 305, 311, 312, 314, 318, 354, 361 R Relationships, 4, 6–8, 12, 18–20, 23, 24, 26, 38, 44, 48–50, 54, 56, 57, 68–70, 74, 82–84, 86, 90, 94, 96–98, 100, 101, 103, 117, 118, 123, 131, 133, 138, 139, 144, 145, 147, 155, 156, 158, 160, 164, 166, 167, 173, 176, 191, 194, 197–200, 202, 209, 212, 216, 219–222, 227, 231–234, 236, 237, 242, 244–247, 250, 252, 255, 256, 258, 273, 279–281, 285, 287, 289, 299–301, 304, 305, 308, 314, 325, 337, 340, 342, 343, 352, 354, 360–362 Researcher bias, 26, 351, 352, 356 Resilience, 21, 35, 38–45, 56, 59, 88, 89, 100, 118, 215, 217, 326, 337, 338 Retraumatizing, 26, 41, 53, 55, 225, 339, 362 Rights based model, 37, 38 S Screenings, 22, 26, 49, 59, 113, 124, 126, 140–148, 175, 198, 286, 341, 355, 363 Self-other dyad, 22, 75, 113, 150, 173, 194 Session location, 24, 210, 234, 260 Symptomology, 21, 35 Systems approach, 21–22, 50, 67, 77–78, 104, 202, 212

367 T Testing, 9, 10, 12, 22, 49, 113, 134, 140–148, 161, 175, 279 The Five P Model, 23, 191, 197–200, 202–203, 205, 221 Therapeutic approaches, 3, 10, 15, 19, 22, 24, 41, 59, 69, 94, 113, 140, 150, 153, 154, 160, 172, 197, 202, 203, 205, 209–211, 236, 237, 241, 250, 257, 258, 260, 328, 338 Trauma, 4, 35, 67, 135, 201, 209, 273, 285, 305, 325, 351, 359 Trauma-informed approach, 23, 25, 39, 46, 49, 59, 150, 340, 341 Traumatic bodily injury, 50 Traumatic brain injury (TBI), 18, 25, 47, 50, 135, 326 Traumatic emotional injury, 25, 26, 50, 327, 362 U United States (US), 8, 10, 21, 22, 47, 48, 53, 67, 68, 82, 83, 85–86, 90, 113, 114, 121, 132–140, 162, 175, 239, 274, 286, 308, 338, 340, 341, 343, 355, 363 Unmetabolized grief, 3, 4, 19, 25–27, 172, 216–217, 236, 325–328, 337, 342, 359–362 Y Yogic science, 24, 26, 39, 95, 155, 209, 251, 278, 297, 352, 353, 362