Living with Dementia: Neuroethical Issues and International Perspectives (Advances in Neuroethics) 3030620727, 9783030620721

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Advances in Neuroethics Series Editors: V. Dubljević · F. Jotterand · R. J. Jox · E. Racine

Veljko Dubljević Frances Bottenberg   Editors

Living with Dementia Neuroethical Issues and International Perspectives

Advances in Neuroethics Series Editors Veljko Dubljević North Carolina State University Raleigh, NC, USA Fabrice Jotterand Medical College of Wisconsin, Milwaukee, USA Ralf J. Jox University Hospital of Lausanne, Lausanne, Switzerland Eric Racine IRCM, Université de Montréal, and McGill University Montréal, QC, Canada

Advances in neuroscience research are bringing to the forefront major benefits and ethical challenges for medicine and society. The ethical concerns related to patients with mental health and neurological conditions, as well as emerging social and philosophical problems created by advances in neuroscience, neurology and neurotechnology are addressed by a specialized and interdisciplinary field called neuroethics. As neuroscience rapidly evolves, there is a need to define how society ought to move forward with respect to an ever growing range of issues. The ethical, legal and social ramifications of neuroscience, neurotechnology and neurology for research, patient care, and public health are diverse and far-reaching — and are only beginning to be understood. In this context, the book series “Advances in Neuroethics” addresses how advances in brain sciences can be attended to for the benefit of patients and society at large. Members of the international editorial board: • Bernard Baertschi, University of Geneva, Switzerland • James Bernat, Dartmouth College, Hannover, USA • Hillel Braude, Mifne Center, Rosh Pinna, Israel • Jennifer Chandler, University of Ottawa, Canada • Hervé Chneiweiss, Sorbonne, Paris, France • Kathinka Evers, Uppsala University, Sweden • Joseph J. Fins, Weil Cornell Medical College, New York, USA • Paul Ford, Cleveland Clinic, USA • Walter Glannon, University of Calgary, Canada • Judy Illes, University of British Columbia, Vancouver, Canada • Neil Levy, Florey Institute of Neuroscience and Mental Health, Melbourne, Australia • Jorge Moll, D'Or Institute for Research and Education, Botafogo, Brazil • Jonathan Moreno, University of Pennsylvania, Philadelphia, USA • Karen S. Rommelfanger, Emory University, Atlanta, USA • Dan Stein, University of Cape Town, South Africa • Nicole Vincent, Georgia State University, Atlanta, USA • Kevin Chien Chang Wu, National Taiwan University, Taipei City, Taiwan More information about this series at http://www.springer.com/series/14360

Veljko Dubljević • Frances Bottenberg Editors

Living with Dementia Neuroethical Issues and International Perspectives

Editors Veljko Dubljević Department of Philosophy and Religious Studies, and Science Technology and Society (STS) Program North Carolina State University Raleigh, NC USA

Frances Bottenberg Department of Philosophy University of North Carolina Greensboro, NC USA

ISSN 2522-5677     ISSN 2522-5685 (electronic) Advances in Neuroethics ISBN 978-3-030-62072-1    ISBN 978-3-030-62073-8 (eBook) https://doi.org/10.1007/978-3-030-62073-8 © Springer Nature Switzerland AG 2021 This work is subject to copyright. All rights are reserved 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

Introduction

Dementia is set to be one of the defining health challenges of the twenty-first century [1–3]. Alzheimer’s disease and related dementias are predicted to affect 75 million people by 2030 and 132 million by 2050 [4], involving countless more individuals secondhand, as they offer necessary care and support to those living with dementia. Such facts urge us all to take this health challenge seriously. What exactly does that entail, though, in the case of a family of neurodegenerative diseases that can take months or many years to unfold, that affects individuals in such wide-­ ranging ways, and that calls into question our most deeply held assumptions regarding the relationship between autonomy and capability, personhood and dignity, or agency and vulnerability? The issues are daunting, but they also create an opportunity for us to explore both current and future possibilities of life with dementia. Ultimately, we may interpret the increasing presence of dementia in our lives as an urgent call to reconsider our anchoring conceptions of human well-being, of a life well lived (and well ended), and of meaningful existence. This reconsideration, if it is to be multidimensional, humane, and thorough, must be situated within interdisciplinary conversation that brings together neuroscientific research, clinical observation, and philosophical reflection on conceptual, moral, and legal issues. Further, this reconsideration must be as inclusive as possible by giving voice to as many stakeholders and as many modes of communication and values as possible [5]. When it comes to developing a collective response to dementia, local and national conversations must be shared with the global public. Practical and lived expertise must be embraced as sources of knowledge and insight on par with academic and scientific expertise. The interdisciplinary and international breadth, research depth, and practical emphasis of Living with Dementia jointly create its value as a title in the neuroethics literature, as well as for gerontology and memory research. All the chapters contained in this volume engage with current neuroscientific research on dementia, either broadly construed or in terms of the etiologies and symptoms of particular forms of dementia. What further links the contributed chapters, as the volume’s title suggests, is a shared concern to show the relevance of theoretical advances to the lives of those diagnosed with dementia and those charged with their care. Many of the contributors draw upon qualitative or first-person data from those living with dementia or those who support them, to develop, test, or refine theoretical or applied proposals. v

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Across 14 chapters of new material from noted authors, the book’s three mutually enhancing sections allow a range of disciplines and fields of expertise to be brought together in one volume for fertile engagement with issues related to dementia diagnosis, treatment, support, and policy. A significant number of contributors to the volume also bring cutting-edge international research and understanding to bear on key issues in dementia care and policy. This global edge gives readers of this collection access to wide-ranging global innovations in philosophical and applied work. The book is divided into three parts: philosophical and conceptual issues (Part I), empirical and clinical implications (Part II), and international perspectives on dementia and care innovations (Part III). In what follows, each section’s contributing chapters will be summarized briefly.

Part I: Philosophical and Conceptual Issues As noted above, there are many conceptual issues that need to be resolved if we as a society are hoping to provide adequate care for people living with dementia. In Chap. 1, Elise Eifert provides insights into dementia risk reduction and the fears often associated with diagnosis. Since the exact causes of dementia are not well known, this contributes to an increase in worry, speculation, superstition, inaccurate information, and even irrational fears. As many people believe that developing dementia is inevitable in old age, it is important to clarify the complicated relationship between lifestyle choices, including physical activity and diet, and the risk of onset or potential for prevention of dementia. Eifert outlines the risk and protective factors associated with dementia and explores the ethics of behavior change aimed at lowering one’s risk for developing dementia from both individual and public health perspectives. Concepts such as “risk” undoubtedly serve as an important tool for intelligent social decision-making, but, as can be seen from this chapter, may have unintended consequences if applied without conceptual nuance in debates surrounding dementia. A similar problem arises with philosophical theories aimed at defining the requirements of rational discourse, since such requirements may effectively exclude certain populations, such as those living with dementia, from being taken seriously as rational communicators. One such theory, known as discourse ethics, seeks to uncover the assumptions that underlie our communicative standards as a way to establish fundamental moral and communal truths. In Chap. 2, Petr Frantik examines whether and how discourse ethics can be refined to promote the social and communicative inclusion of people with dementia. For instance, discourse ethics has served as a powerful theoretical underpinning for the inclusion of women and minorities in the social debates regarding how society should be run or how certain social policies ultimately disempower certain populations based on irrational factors such as gender or race [6, 7]. In order to tackle discrimination and stigma, Frantik argues that the concepts of communicative rationality and of the ideal speech situation offer promising starting points for a general strengthening of

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participation rights, but are still too narrowly defined to include people with dementia as members of the discourse. He refines discourse ethics approaches by redefining underlying concepts, presenting current scientific findings about the communication methods of people with dementia, and emphasizing their competence to contribute important socio-moral claims. Frantik suggests several ways to include persons with dementia in discourse, thus including and empowering them as rightful participants in shared decision-making processes. Another important conceptual issue regarding dementia arises with respect to identity loss. A number of ethical questions are related to this issue, including the applicability of advance directives and the validity of patient preferences that seem incongruous with a previous history of values. In Chap. 3, Nada Gligorov and Christopher Langston draw and expand on prior work [8] to argue that “self-­ identity” theory should be the guiding view of personal identity in healthcare, especially in cases of Alzheimer’s disease (AD) and frontotemporal dementia (FTD). They identify continuation of memories, consistency in personality traits and personal preferences, and continued endorsement of certain moral tenets as frequently mentioned criteria for the continuation of personal identity over time. By carefully analyzing a range of empirical evidence, Gligorov and Langston argue that the continued commitment to widely shared moral beliefs is the most important for continuation of personal identity. Two upshots of their analysis are that people living with FTD are more likely to lose their self-identity than individuals whose dementia primarily affects memory, and also that this nexus of moral beliefs and personal identity should be used to guide healthcare professionals when considering changes in preference by individuals living with dementia. The section concludes with an exploration of the conceptual quandary of whether it is ever morally permissible to use deceptive tactics, or other means which surpass the standard limitations of autonomy, to nudge the decisions of people living with dementia. In Chap. 4, Agnieszka Jaworska draws and expands on her previous work on autonomy in dementia [9] to argue that, in certain cases, deception directed at people living with dementia can support their fragile ability to exercise autonomy. However, if it turns out that the person living with dementia, in their current state, has views about being lied to and specifically does not want to lead a sham life, Jaworska argues that deception should not be used, as it would go directly against what the person takes to be important in life and would be disrespectful.

Part II: Empirical and Clinical Implications There are many issues to address in the neuroethics of dementia, and some of them require empirical methods and specific inputs from clinical practice to disentangle. The second section of Living with Dementia takes up this project, as its contributing authors each focus on different, but equally compelling, practical or clinical issues. Katherine Dildy and Emily Largent begin the section in Chap. 5 by addressing end-­of-­ life care and its challenges and prospects in the case of persons with dementia. The authors defend the importance of early and ongoing decision-making, if end-of-life

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decisions are not to be left to surrogate decision-makers who may or may not be well equipped to handle its demands. They outline three modalities for end-­of-­life decision-making—decisions made by, with or for the person with dementia—that optimally align with their capacities, interests, and self-identity as symptoms progress. Related to matters of informed decision-making, Chap. 6 considers diagnosis threat related to the use of biomarkers to detect Alzheimer’s disease. In this case, diagnosis threat occurs when someone’s beliefs about what is typical for individuals who have dementia negatively influence how they perceive or enact their own capacities or behaviors once diagnosed, even if that diagnosis occurs through genetic testing prior to clinical manifestation of the disease. Since diagnosis threat can have a negative impact on psychological well-being and since not all people genetically at risk of dementia develop its symptoms, Thomas J. Farrer and Sarah E.  Cook argue that doctors and clinicians must tread especially carefully when deciding to reveal testing results to asymptomatic patients. In Chap. 7, Anirudh Nair and Veljko Dubljević share the results of their careful study of English-language media representation of dementia, with an emphasis on frontotemporal dementia (FTD). Retrieving and analyzing a sample of 137 articles enables them to construct a clear picture not only of how FTD is popularly represented today, but also how the larger discourse surrounding dementia is shaped by particular moralizing metaphors and various forms of stigmatization. Reflecting on these findings and prior work on autonomy in dementia [10], the authors elaborate on the importance of establishing diversion courts for handling cases of illegal or socially inappropriate behavior perpetrated by persons with dementia (and most commonly those with FTD). Part II closes with a chapter by Evelyn M. Tenenbaum (Chap. 8), who draws and extends on prior work [11] to offer considered recommendations for assessing consent to sexual relations among individuals with dementia, specifically those residing in long-term care institutions or nursing homes. Sex and the desire for physical intimacy are fundamental and universal human drives, and sexuality and sexual urges do not necessarily diminish or disappear with the onset of more severe symptoms of dementia. The author focuses on the challenging decision-making that caregivers face when dementia patients or residents under their care either express a desire for intimacy with another resident or are themselves the target of such desire. The fundamental issue concerns how to assess consent in these scenarios, so that all parties involved are protected from sexual exploitation and harm, and can benefit from the self-affirmation and pleasure that ideally comes from intimacy with another person. The chapter concludes with a decision tree that lays out possible options for assessing consent.

Part III: International Perspectives It is important to understand that dementia is a global phenomenon, and therefore dominant perspectives may not apply to all cultures and minority subgroups. In this respect, it is important that voices from around the globe are heard and problems specific to different societies and groups be discussed.

Introduction

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In Chap. 9, Frances Bottenberg addresses the ethical, epistemic, and logistical challenges for dementia support among Canada’s Indigenous communities. This is complicated by the distrust of the medical establishment stemming from traumatic colonial histories and ongoing social marginalization. She argues that a lack of culturally appropriate prevention and diagnosis protocols further risks disrespecting Indigenous perceptions of dementia and its meaning in human life. Bottenberg concludes that intercultural training in nursing and other healthcare contexts needs to be supplemented with “cultural safety” as a critical concept for decolonizing healthcare access. Cultural dichotomies and clashes are not limited to subcultures in developed nations. Indeed, the very fact of living in a developed nation means that a rich history with conflicting values will be operative. In Chap. 10, Léo Coutellec, Sebastian J. Moser, and Paul-Loup Weil-Dubuc provide a perspective on the interplay between hope and responsibility in the context of addressing challenges caused by dementia in France. They argue that anticipation of the future is experienced via two alternative visions of society: on the one hand, a hope-without-responsibility approach that anticipates a world relieved of dementia and, on the other hand, a responsibility-without-hope approach that anticipates a world accepting of and adapted to the specific needs of people living with dementia. Coutellec and colleagues conclude that societies in general and France in particular need to consider scientific, technological, and social changes in light of an attitude they call “responsible hope.” However, dementia is not an issue only in wealthy Western countries, but a growing concern in low- and middle-income countries. In Chap. 11, Duska Franeta examines the legal rights and guardianship provisions given to persons living with dementia in present-day Serbia. Franeta effectively shows that while there are praiseworthy legal protections in place to shield this vulnerable population from coercive, abusive, and degrading treatment, there is much work still to be done both in Serbian law and abroad when it comes to attending to the particular situations, needs, and interests of people with dementia. Contemporary Serbian law draws on two very different conceptions of human dignity—the first depends on simply being a biological human and the second on the possession of specific traits or capacities, such as self-determination or rational judgment. Based on careful analysis of court decisions, Franeta shows that jurisprudence drawing implicitly on these two different senses of “dignity” results in interpretive lacunae that negatively affect people living with dementia. In Chap. 12, Andrea Palk and Dan Stein consider the risk of stigma associated with genomic research on dementia in sub-Saharan Africa. They argue that there is significant underrepresentation of populations with African ancestry in this research, which has serious ethical implications, given the long-term potential of genetic knowledge for predicting risk, improved diagnosis, and possibly novel treatment for dementia, as well as the stigma associated with living with dementia. Palk and Stein argue that interpretations of dementia-related stigma need to take into account different explanatory models of dementia in sub-Saharan African contexts. They highlight the possibility that biogenetic approaches to dementia may be interpreted in essentializing and dehumanizing ways. Palk and Stein proceed to outline

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commonalities in Afro-Communitarian moral frameworks and related implications for dementia stigma and conclude with suggestions for alleviating dementia stigma with the help of large-scale genomic studies. Commonalities and differences are important to study in cross-cultural contexts. People living with dementia experience similar obstacles and yet have diverse society-­specific resources at their disposal. In Chap. 13, Silke Schicktanz and Aviad Raz draw and extend on prior work [12] to contrast the experiences in Germany and Israel, as well as the United States, regarding patient advocacy in dementia. They explore the role and social practices of dementia patient organizations and focus on the biopolitical impact on health policy governance and national research policies in these societies. Schicktanz and Raz discuss the normative key concepts of representation and conclude that inclusion of proxy representatives versus people living with dementia themselves varies culturally in terms of interpretation and moral practice. Finally, it is important to consider how specific provisions of international treaties such as the Convention on the Rights of Persons with Disabilities (CRPD) are enshrined in legal practice in jurisdictions across the globe. Interpretation of law is frequently informed by specific religious and cultural worldviews, such as Confucianism. In Chap. 14, Kevin Chien-Chang Wu explores the issues of capacity and legal status of people living with dementia in Taiwan. Wu delineates Taiwanese approaches to legal capacity and demonstrates the ambivalence, complexity, and difficulty for Taiwan to comply with the CRPD. Based on his prior work with public surveys and court decisions from Taiwan [13], Wu examines the role of neuroscience in the relationship between legal capacity and the CRPD.  The author concludes that neuroscience is neither necessary nor sufficient for determining legal capacity or criminal responsibility in Taiwan and proposes a tentative reconciliation of the CRPD’s legal capacity approach, neuroscientific evidence, and the moral imperative to respect persons living with dementia. Existing book-length treatments of dementia and its impacts tend to fall into one of three general camps. First, there are highly empirical handbooks whose audience consists primarily of clinicians, care professionals, and institutional administrators. Another section of the literature is geared toward nonspecialists and laypersons who wish to educate themselves on dementia, focusing on strategies for self-care and caring for someone with dementia. Finally, there are neuroethics collections that put moral theory and contemporary neuroscience into conversation with each other, but at most dedicate one or two chapters to the topic of dementia, typically with a focus on Alzheimer’s disease. Such collections tend to be written by academics for consumption by a limited segment of readership, often discussing problems of a local or disciplinary nature. With this volume, we believe that the reader will encounter a lively dialogue among different disciplines and cultural perspectives, which we hope will broaden the discussion and make it more inclusive. Last but not least, we hope that this volume will encourage many readers to consider the lives of those with dementia as dignified and important. Together, we can re-imagine and transform our care paradigms and laws to be more humane, inclusive, and empowering for those living with dementia.

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References 1. Alzheimer’s Disease International and WHO.  Dementia: a public health priority. Geneva: World Health Organization; 2012. http://www.who.int/mental_health/publications/dementia_ report_2012/en. Accessed 8 June 2020. 2. Dubljević V. Disease and wellness across the lifespan: a global perspective on mental health burden of dementia. In: Stein D, Singh I, editors. Global mental health and neuroethics. Amsterdam: Elsevier; 2019. p. 225–35. 3. World Health Organization. Global action plan on the public health response to dementia 2017–2025. Geneva: World Health Organization, Licence: CC BY-NC-SA 3.0 IG; 2017. https:// www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en. Accessed 8 June 2020. 4. World Health Organization. The epidemiology and impact of dementia: current state and future trends. Geneva: World Health Organization, Document WHO/MSD/MER/15.3; 2015. http:// www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_epidemiology.pdf. Accessed 8 June 2020. 5. Bottenberg F. Epistemic arrogance, moral harm, and dementia. In: Third biennial conference on the philosophy of disability, University of North Carolina-Asheville, 6–7 March 2020. 6. Habermas J.  The inclusion of the other: studies in political theory. Cambridge: Polity Press; 2005. 7. Meehan J. Feminists Read Habermas. London: Routledge; 1995. 8. Gligorov N. Neuroethics and the scientific revision of common sense. Dordrecht: Springer; 2016. 9. Jaworska A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philos Public Aff. 1999;28(2):105–38. 10. Dubljević V.  The principle of autonomy and behavioral variant frontotemporal dementia. J Bioethical Inquiry. 2020. https://doi.org/10.1007/s11673-020-09972-z. 11. Tenenbaum EM. To be or to exist: standards for deciding whether dementia patients in nursing homes should engage in intimacy, sex, and adultery. Indiana Law Rev. 2009;42:675–720. 12. Raz A, Jordan I, Schicktanz S. Exploring the positions of German and Israeli patient organizations in the bioethical context of end-of-life policies. Health Care Anal. 2014;22:143–59. https://doi.org/10.1007/s10728-012-0213-4. 13. Wu KC-C, Lee MS, Chen CF. Neuroscience and the law: criminal responsibility and civil competence. Taipei: National Taiwan University College of Medicine; 2014.

Contents

Part I Conceptual Issues 1 The Ethics of Dementia Risk Reduction��������������������������������������������������   3 Elise Eifert 2 Refined Discourse Ethics and the Social Inclusion of People with Dementia����������������������������������������������������������������������������  17 Petr Frantik 3 Do You Remember Who You Are? The Pillars of Identity in Dementia������������������������������������������������������������������������������������������������  39 Nada Gligorov and Christopher Langston 4 Respect for Autonomy in the Face of Dementia: The Case of Deception ������������������������������������������������������������������������������  55 Agnieszka Jaworska Part II Empirical and Clinical Implications 5 Directing the End of Life in Dementia ����������������������������������������������������  71 Katherine C. Dildy and Emily A. Largent 6 Diagnosis Threat Related to Disclosure of Alzheimer Disease Biomarkers and a Discussion of the Ethics in Clinical and Research Settings��������������������������������������������������������������������������������  91 Thomas J. Farrer and Sarah E. Cook 7 Public Representation of Social and Ethical Issues in Frontotemporal Dementia�������������������������������������������������������������������� 109 Anirudh Nair and Veljko Dubljević 8 Assessing Consent to Intimate Sexual Relations Among Nursing Home Residents with Dementia ������������������������������������������������ 131 Evelyn M. Tenenbaum

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Part III International Perspectives 9 Defining Dementia Care Standards When Cultural Safety is at Stake: The Case of Indigenous Canadians with Dementia������������ 155 Frances Bottenberg 10 Towards an Ethics of Anticipation Between Hope and Responsibility French Perspectives on Alzheimer’s Disease���������� 171 L. Coutellec, S. J. Moser, and P. -L. Weil-Dubuc 11 Legal Status and Dignity of Persons Living with Dementia in Serbia������������������������������������������������������������������������������������������������������ 183 Duška Franeta 12 Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa: Addressing the Risk of Stigma ������������������������ 199 Andrea C. Palk and Dan J. Stein 13 Patient Advocacy in Dementia: The Culture and Ethics of Policy-Making and Representation������������������������������������������������������ 223 Silke Schicktanz and Aviad Raz 14 Legal Capacity in the Civil Legal Lives of Persons with Dementia in Taiwan: Implications of the Convention on the Rights of Persons with Disabilities������������������������������������������������ 237 Kevin Chien-Chang Wu

Part I Conceptual Issues

1

The Ethics of Dementia Risk Reduction Elise Eifert

Contents 1.1  1.2  1.3  1.4 

Introduction Alzheimer’s Disease and Related Dementias Risk and Protective Factors of ADRD Ethical Considerations of Addressing ADRD from an Individual or Public Health Perspective 1.4.1  Individuals as Responsible 1.4.2  Societies as Responsible 1.5  Conclusion References

   4    5    6    7    7    9  12  12

Abstract

The thought of developing Alzheimer’s disease or a related dementia (ADRD) is a frightening prospect for many of those aging. Little is known about the exact causes of ADRD. This creates an environment of worry, speculation, superstition, inaccurate information, and irrational fears surrounding who is at risk. Far too many people wrongly believe that developing ADRD is inevitable as you age, and all one can do is hope for the best and wait for pharmaceutical intervention. The truth is much more complicated. Certain lifestyle choices, such as physical activity and diet, may support brain health and delay onset or prevent ADRD. With few drawbacks and plenty of known benefits, why are more people not actively trying to lower their risk of Alzheimer’s disease? This chapter will outline the risk and protective factors associated with ADRD and explore the ethics of ADRD prevention from an individual and societal perspective. Fear appeals, victim blaming, government paternalism, and more will be examined. E. Eifert (*) The University of North Carolina at Greensboro, Greensboro, NC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_1

3

4

1.1

E. Eifert

Introduction

What do Americans worry most about in  aging? According to a national poll by ResearchAmerica [1], it is losing their mental faculties. A survey by MetLife Foundation [2] found that people dread getting Alzheimer’s disease more than any other disease except cancer. In a recent documentary, Bill Gates was asked, “What is your worst fear?” and he responded, “I don’t want my brain to stop working” [3]. For many, the prospect of developing dementia is so terrifying that it prompts them to consider euthanasia before it “gets too bad.” Grandmothers and grandfathers across the country are stockpiling their pills to take all at once and end their lives [4, 5]. Spouses are making suicide pacts with each other if worst comes to worst [6–10]. Is this response rational? Is it warranted? A diagnosis of Alzheimer’s disease or related disorders (ADRD) can be devastating. ADRD slowly robs people of their capacities by destroying memory, thinking skills, and the ability to carry out the simplest tasks. It can be overwhelming not only for the person who has it but also for their caregivers and families. Common sense would say that people should do anything in their power to prevent something that provokes so much fear. But is that the case? It turns out that it is not. A 2015 randomized control trial using multi-domain interventions showed that a healthy diet, exercise, socialization, and mental stimulation can dramatically reduce a person’s chances of developing dementia [11]. Yet, the majority of Americans consume fewer fruits, vegetables, and dairy than is recommended by the 2015–2020 dietary guidelines, and eat more sodium, saturated fat, and added sugars than suggested [12]. Almost 77% of adults do not meet physical activity guidelines for both aerobic and muscle-strengthening activities [13]. Approximately one in three adults aged 45 and older report being lonely [14]. Finally, the average American spends 4 h and 46 min every day watching television [15], a decidedly less mentally stimulating activity than reading, visiting a museum, or seeing a play. These statistics suggest that Americans are either unconcerned with lowering their chances of developing ADRD or unaware of the factors that contribute to ADRD development. A 2018 study found that almost 50% of all respondents perceive dementia as an inevitable part of aging [16]. A similar study found that one-third of respondents believe nothing can be done about the risk of dementia [17]. More than half of participants in a 2016 study agreed with the statement “there is nothing one can do to lower one’s dementia risk” [18]. This is concerning considering the mounting evidence that healthy lifestyle behaviors play a role in lowering risk of ADRD and delaying the onset of ADRD development. Norton and colleagues suggest that one-­ third of cases of dementia can be prevented with management of risk factors [19], while Dhana and associates found that combining certain lifestyle habits can reduce the risk of ADRD by 60% [20]. Misinformation about ADRD abounds and frequently varies from culture to culture. For example, some Hispanic/Latino cultures in the United States attribute the presence of dementia to having experienced a difficult life. Others believe that dementia is caused by God’s will or results from such forces such as “el mal ojo” (the evil eye). In some Chinese and Chinese-American communities, dementia is

1  The Ethics of Dementia Risk Reduction

5

often regarded as a punishment for violating Confucian norms governing interpersonal relations [21]. Many Americans have long-held beliefs that aluminum, Aspartame, flu shots, and silver dental fillings can cause dementia [22]. If one does a quick search of the Web, a plethora of websites and pages dedicated to dispelling the “myths” of ADRD can be found. Every major dementia-related organization, including the Alzheimer’s Association, has a page on its website dedicated to addressing misinformation and lowering risk of developing dementia. Since the 1980s, scientific attention and support for research on ADRD have increased, including medications to ease some of the symptoms. Drugs such as Aricept and Namenda can reduce symptoms temporarily, but they do not cure dementia or even slow its progression down. No major breakthroughs in ADRD treatment have occurred in the last 20 years. Risk reduction through primary prevention holds the most hope. Prevention is more cost-effective and potentially more impactful than any treatment. Delaying onset of ADRD could generate significant economic and longevity benefits and have a profound effect on public health and individual lives. It has been suggested that delaying the start of ADRD by 5 years could cut the prevalence by 40–50% [23, 24]. The following will provide a brief overview of dementia and its commonly associated diseases and disorders. The remainder of this chapter will examine risk and protective factors associated with ADRD and the ethics of ADRD prevention from an individual and societal perspective.

1.2

Alzheimer’s Disease and Related Dementias

Dementia refers to a syndrome that is characterized by progressive deterioration of cognitive and physical functions [25]. It includes a cluster of symptoms affecting memory, thinking and social abilities that are severe enough to interfere with daily life and will gradually impede the person’s ability to be independent. Of significance, dementia is not one specific disease, but multiple different diseases and pathologies that cause signs and symptoms unique to the etiology. More than 50 conditions can cause or mimic the symptoms of dementia [26]. The syndrome of dementia is caused by damage to brain cells. This damage interferes with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behavior, and feelings can be affected. The brain has many distinct regions, each of which is responsible for different functions (for example, memory, judgment, and movement). When cells in a particular region are damaged that region cannot carry out its functions normally. Different types of dementia are associated with particular types of brain cell damage in specific regions of the brain. The most common diseases or conditions that cause dementia symptoms include Alzheimer’s disease (AD), vascular dementia (VaD), Lewy body dementia (LBD), and frontotemporal dementia (FTD) [27]. Additional degenerative brain diseases such as Parkinson’s, Huntington’s, and Creutzfeldt–Jakob disease can cause dementia symptoms. Traumatic brain injuries and long-term alcohol or

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drug use can lead to irreversible dementia, while causes of reversible dementia include tumors or infections of the central nervous system such as meningitis or HIV. Furthermore, normal pressure hydrocephalus (buildup of fluid in the brain), nutritional issues such as thiamine and iron deficiencies, thyroid disorders, and depression can cause cognitive and behavioral symptoms associated with dementia. In some situations, once the primary etiology is treated, dementia symptoms disappear and normal cognitive function returns. To complicate matters, subtypes of dementia can occur simultaneously in situations referred to as mixed dementia, meaning the dementia has more than one pathological cause [28]. Examples include LBD combined with VaD or AD.  Throughout this chapter, all of the aforementioned individual and mixed conditions that can cause the symptoms of dementia will be grouped together and collectively known as Alzheimer’s disease or related disorders (ADRD).

1.3

Risk and Protective Factors of ADRD

Like other common chronic conditions, ADRD probably develops as a result of complex interactions among multiple factors, including age, genetics, environment, lifestyle, and coexisting medical conditions. Everyone is at some degree of risk for developing ADRD, but some have a higher or lower risk than others. For example, a typical 80-year-old woman is much more likely to develop dementia in the next 5 years of her life than a typical 30-year-old woman. A risk factor is anything that increases a person’s risk of developing a condition [29]. The most well-known risk factors for ADRD are age; family history; genetics; conditions that damage the heart, arteries, or blood; and certain lifestyle or health-­ related behaviors such as lack of physical exercise, smoking, poor diet, and alcohol consumption. A number of other factors are associated with ADRD risk, including sleep deprivation, depression, head injuries, chronic stress, lack of education, lack of cognitive stimulation, and social isolation. Although some risk factors—such as age or genes—cannot be changed, others are modifiable, meaning a person can take measures to change them. In principle, if a risk factor can be modified, then morbidity can be prevented, and mortality delayed. A growing consensus has emerged that people can take concrete steps to reduce their risk of developing ADRD by reducing risk factors and incorporating more protective factors into their lives. A protective factor is anything that decreases a person’s risk of developing a condition. They enhance the likelihood of positive outcomes and lessen the likelihood of negative consequences from exposure to risk [30]. In May 2019, the World Health Organization released guidelines for the “proactive management of modifiable risk factors [that] can delay or slow onset or progression of the disease” in Risk Reduction of Cognitive Decline and Dementia [31]. Their recommendations included getting regular exercise, not smoking, avoiding harmful use of alcohol, controlling weight, and eating a healthy diet.

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7

 thical Considerations of Addressing ADRD E from an Individual or Public Health Perspective

Considering what is known about risk and protective factors of ADRD, the next logical questions are centered around what should be done about ADRD prevention and who is responsible for ensuring it. Public health seems like a reasonable choice because of its focus on prevention. However, many of the risk and protective factors of ADRD are personal, lifestyle behaviors. Should the burden of ADRD prevention fall on individuals or society?

1.4.1 Individuals as Responsible In 1979’s Healthy People Report [32], Surgeon General Julius Richmond proclaimed his belief in personal responsibility for disease prevention by saying, “the individual can do more for [his] own health and well-being than any doctor, any hospital, any drug, any exotic medical device” (p. 7). He warned us that “we [were] killing ourselves by our own careless actions” (p. 7). The underlying premise of his report was that if people have a vested interest in their health, they will do more to maintain it. Individuals’ personal choices and behaviors are significant determinants of their risk for ADRD. It makes sense to hold them responsible for their choices that could lead to ADRD.  From an economic and medical perspective, it is in an individual’s best interest to prevent ADRD given the well-documented disease burden and health-care costs. Taking preventative measures against ADRD involves common sense, healthy activities—eating well, exercising regularly, socializing with others, and mental stimulation. Yet, we know most Americans are not doing these things. Prevention focusing on individual behavior may be challenging when it comes to ADRD. Not only do individuals underappreciate what they can do to reduce their risk of developing ADRD but when a health issue does not appear until later in life, it becomes easy to ignore. Too often, ADRD risk is only a concern of the elderly. From an individual perspective, ADRD prevention should be considered in a person’s 40s, 50s, and 60s. By the time an individual is in their 70s, it may be too late to do anything about it. One approach often seen in efforts to get individuals to change health-related behaviors is fear appeals. Fear appeals are messages that try to persuade people about the potential harm that may happen to them if they do not accept the stated messages’ recommendations [33]. The basic message is if you do not do X, something awful will happen as a consequence [34]. Fear appeals rely on a threat to personal well-being to motivate the individual toward action. They have been used to discourage a variety of health-related behaviors. Examples include videos of car accidents due to texting while driving; profiles of people who are living with serious long-term health effects from smoking; or the classic commercial of an egg on

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a frying pan with a voiceover saying, “This is your brain on drugs.” Considering the overwhelmingly negative view of ADRD taken by society as a whole, often referred to as “tragedy discourse” [35], it would make sense to capitalize on people’s fear of developing ADRD by using fear appeals to prompt individuals to adopt protective behaviors and reduce risky behaviors. Despite their intuitive appeal, fear-based approaches for individual behavior change remain contentious. A fear appeal has the potential to be effective if the facts presented are intrinsically true, but they can also be extremely ineffective when baseless fear is employed in an excessive or exaggerated way. For example, in a fear appeal related to ADRD, the message might say “if you do not X (exercise, avoid smoking, avoid harmful use of alcohol, control weight, eat a healthy diet), you will develop ADRD.” This is misleading because only risk factors, not causes, are known about ADRD. A person will certainly increase their likelihood of developing ADRD by not participating in these behaviors, but there is no guarantee of disease development. The message could be altered to say “if you do not X (exercise, avoid smoking, avoid harmful use of alcohol, control weight, eat a healthy diet), you will increase your chances of developing ADRD” but that seems less fear-inducing and, therefore, less effective. Fear appeals could be considered a morally acceptable method of getting people to act in their best interest because fear appeals strongly motivate an individual to act. Without them, individuals may be less likely to participate in the behaviors and activities that reduce their risk of developing ADRD. However, fear appeals create some ethical challenges in the context of ADRD. How far should a fear appeal go? Is the potentially effective but misleading, “if you do not X, you will develop ADRD” better or the less effective but more truthful, “if you do not X, you will increase your chances of developing ADRD”? Even if based on fact, it is notable that fear appeals feed into the tragedy discourse surrounding ADRD, perpetuate the negative characterization of ADRD, as well as stigmatize the people living with ADRD. Another ethical issue that can arise from an individual approach to ADRD risk reduction is victim blaming. Victim blaming refers to a tendency for people to place sole responsibility for an illness on the individual attitudes, behaviors, and lifestyle choices of the person with the illness [36]. As the understanding of aging and ADRD development improves, more and more dementias become explainable in terms of risk factors. The progressive elucidation of avoidable risk factors, in turn, strengthens the case for treating people as the cause of their own ADRD. Once we admit that people bear some degree of responsibility for their conditions, the circle of blame is limited only by our understanding of pathology and epidemiology. Interventions that adapt an individual approach to ADRD risk reduction can imply that people who develop ADRD are responsible for it by virtue of not doing everything in their power to modify their risk for developing it. We must consider if it is ethical to hold individuals responsible for their own ADRD risk, since like many other conditions and diseases, ADRD results from an interplay of several factors- some of which are in our control, some of which are not. Furthermore, we may need to consider that pursuing ADRD prevention is a privilege given to individuals who can access the right resources such as the ability to join a gym, buy fresh

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fruit, or participate in mentally stimulating activities. Although individuals play an important role in their own risk for developing ADRD, it may not be ethical to hold them entirely responsible for it.

1.4.2 Societies as Responsible The long list of known risk and protective factors provides targets for ADRD prevention and makes it an appropriate issue to be addressed by public health. According to Turnock, Public health is “what we, as a society, do collectively to assure the conditions for people to be healthy” [37, p. 19]. The aim of public health is to prevent problems from occurring in the first place by targeting key risk and protective factors and addressing them at a population level. Public health follows four traditional steps [38]: 1. Defining the problem: Before we can address ADRD, we need to know how big the problem is, where it is, and whom it affects. Public health accomplishes this by gathering and analyzing data or “surveillance.” These data can demonstrate how ADRD changes over time, draw attention to trends, and let us know what impact prevention programs are having. Decision makers such as government entities or grant providers use these critical data in allocating programs and resources to areas most in need. Since Alzheimer’s Disease was first discovered in 1906, great efforts have been made to understand the “who,” “what,” “when,” “where,” and “how” of ADRD. 2. Identifying risk and protective factors: It is not enough to know ADRD is affecting a large number of people and is costly to society. Public health also needs to know why ADRD occurs in terms of the causes, the factors that increase or decrease risk, and the factors that may be modified through intervention. This step is about reviewing research to identify what factors put people at risk for ADRD and, conversely, what factors protect people from it. A number of scientists, medical professionals, and public health organizations conduct and support research to answer these important questions. Although the exact causes of many forms of dementia are unknown, risk and protective factors are numerous, as outlined in the previous sections. 3. Developing and testing prevention strategies and programs: In this step, knowledge is put into action. Information on risk and protective factors is used to develop and implement interventions including policies to eliminate or reduce risk factors for ADRD and to capitalize on or increase protective factors. Public health develops interventions to implement in communities that are most likely to experience, or be impacted by, ADRD. A number of ADRD prevention and policy interventions have been implemented and evaluated, but it is beyond the scope of this chapter to identify them all. However, there are multiple comprehensive literature reviews on cognitive health promotion and public health interventions for decreasing dementia risk that summarize what interventions have occurred in the last decade [39–41].

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4. Ensuring widespread adoption by disseminating the information: In the final step of the public health approach, knowledge on “what works” regarding ADRD prevention is shared so that communities can replicate these successful interventions. Evaluation results of the strategies and interventions should be made publicly available and accessible. This builds the body of evidence around prevention and enables the information to be disseminated broadly, so that successful interventions can be replicated. The information learned in the developing and testing step has little benefit if that information is kept private. From a public health perspective, it makes sense to hold society responsible for creating communities that promote cognitive health and reduce risk of ADRD among its members. The ways in which this is attempted vary but are often aimed at organized efforts at the local, state, national, and global levels. It can include any program, campaign, policy, or other measure that sets out to address underlying factors and reduce the incidence and prevalence of a disease. Because public health is often reliant on government action, it can be controversial. Some people view public health as being paternalistic. Paternalism is the “intentional interference with a person’s freedom of action exclusively—or primarily—to protect his or her own health, safety, welfare, or happiness” [42]. Examples include mandatory motorcycle helmet and seat belt laws, gambling prohibitions, criminalization of recreational drugs, and, more recently, restrictions on tobacco and fast food. An ethical challenge of ADRD risk reduction at the societal level is balancing individual liberties with the advancement of good health outcomes. There are a wide range of regulatory efforts that federal, state, and local governments can take to address ADRD prevention, such as policies relating to exercise, smoking, alcohol, and diet and their relationship to ADRD that could bring healthy changes to communities and reduce ADRD risk. For example, citing the evidence for a close link between the health of the heart and the health of the brain, public health interventions that address modifiable risk factors for cardiovascular disease, such as quitting smoking, adopting a heart-healthy diet, or increasing physical activity, may also reduce risk for ADRD. To utilize the public health approach, ADRD must be seen as a societal issue and not as an individual issue. A public health approach should only be used if the issue impacts others, not just the individual with ADRD. Concerning the harm principle, J.S. Mill states that “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others” [43, p.  22]. For example, smoking has direct consequences to people other than the actual smoker, so it is easy to argue that society must address smoking. A public health approach to ADRD is justifiable if the argument can be made that ADRD poses harm to others. It is obvious that the individuals who have ADRD suffer the primary consequences themselves, but it can be argued that society also suffers. For one thing, ADRD threatens to overwhelm health and social care systems. Direct costs of ADRD are shared between individuals, families, and the public system. There are two types of direct costs: medical and social. Medical costs are

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related to health care and include the cost of physician visits and hospital admissions. Medical care related to ADRD in the US is more expensive than heart disease or cancer in terms of direct medical costs over a 5-year span [44]. Health insurance, provided by public and private sources, typically cover medical costs associated with ADRD. In 2019, total direct medical costs, including Medicare and Medicaid, for individuals with ADRD were estimated at $290 billion [45]. Medicaid is a public assistance health-care program for low-income Americans regardless of their age, paid for with public funds collected through taxes. Medicare, on the other hand, is an age-based federal health insurance program that guarantees coverage for individuals aged 65 and over. Medicare and Medicaid are both administered by the government and are considered social welfare programs. It has been suggested that the anticipated increase in ADRD in the next 30 years will potentially bankrupt both programs [46]. Social costs are the costs of formal social care such as home health, adult day centers, or nursing home expenses. Direct social costs can be partly covered by long-term care insurance, but the overwhelming majority is paid out of pocket by the person with ADRD. According to Genworth’s most recent Cost of Care Survey, the annual median cost of care ranges from $18,720 for adult day care services to $100,375 for a private room in a nursing home [47]. The cost of social care related to ADRD was $277 billion in 2018—more than the entire economy of some countries [48]. It is estimated to exceed $1.1 trillion by 2040. Given the high out-of-pocket cost of social care, many individuals must rely on their families to either share the financial burden or to forego social care by providing care themselves. In 2019, there were approximately 16 million family caregivers for someone who has ADRD [45]. The impact of family caregiving can be felt at the individual, family, and societal level. Shulz and Eden [49] lists the following consequences “(1) reductions in available financial resources of the caregiver as a consequence of out-of-pocket expenses; (2) employment-related costs for the caregiver who must reduce work hours, exit the labor force, and forego income, benefits, and career opportunities in order to provide care; (3) employment-related costs to the employer who must replace workers who leave the labor force or reduce hours; and (4) societal benefits that include the potential cost savings to the formal health and long-term services and supports (LTSS) systems because of the care and support provided by family caregivers” (p. 124). Additionally, close to one-quarter of ADRD caregivers are “sandwich generation” caregivers—meaning that they care not only for an aging parent but also for children under age 18 [45]. The emotional, social, physical, and financial burden on this “sandwich generation” is significant. Another alarming trend is the rise of child and youth caregivers. As many as 1.4 million US children aged 8–18 are caring for a parent, grandparent, or sibling with a disability or illness [50]. Many are falling behind in school, losing sleep, and struggling with anxiety or depression as a result of their caregiving duties. The use of a public health approach to prevent ADRD seems appropriate depending on the extent to which the arguments on the societal impact of ADRD are accepted. The direct costs of ADRD to individuals, the health sector, and wider society are significant. Public health can be a cost-effective solution to this challenge

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considering that for every dollar spent on prevention, more than five dollars are saved in health spending [51]. A public health approach to ADRD prevention may reduce costs to the medical and social sectors which can help create sustainable health systems and economies for the future. Public health interventions that create communities where cognitive health is supported may be necessary. Without government involvement, ADRD prevention may never occur. However, focusing on public health solutions creates some ethical challenges and raises further questions in the context of ADRD. How much should the government be involved in ADRD prevention? To what extent does government involvement in ADRD prevention interfere with individual rights? Does ADRD have an impact on more than just individuals? If so, is that impact great enough to justify a public health approach to ADRD prevention? These questions are challenging, but must be explored if ADRD prevention is to be effective.

1.5

Conclusion

There are at least five million people currently living with ADRD in the United States. The Alzheimer’s Association has projected that this number will grow to 16 million by 2050 if efforts to manage risk are not implemented [45]. Both individuals and societies have a role to play in ADRD prevention. Individuals must recognize that ADRD does not have to be an inevitable part of aging and take steps to reduce their personal risk. Society must make a stronger commitment to educate and create environments that support behaviors and lifestyles that lead to cognitive health among its members. Ethical issues like fear appeals, victim blaming, government paternalism, and others should be discussed and taken into consideration to move forward and address ADRD before it is too late to make a difference.

References 1. Top concerns about aging: failing health, mental ability [news release]. Arlington: Research America. 2006. https://www.researchamerica.org/news-­events/news/top-­concerns-­about-­ aging-­failing-­health-­mental-­ability. Accessed 3 July 2019. 2. MetLife Foundation. What America thinks-MetLife Foundation Alzheimer’s survey. 2011. https://www.metlife.com/content/dam/microsites/about/corporate-­profile/alzheimers-­2011. pdf. Accessed 3 July 2019. 3. Guggenheim D.  Inside Bill’s brain: decoding Bill Gates [Online]. Los Gatos: Netflix, Inc.; 2019. 4. Barak Y, Aizenber D. Suicide amongst Alzheimer’s disease patients: a 10-year survey. Dement Geriatr Cogn Disord. 2002;14(2):101–3. 5. An JH, Lee KE, Jeon HJ, et al. Risk of suicide and accidental deaths among elderly patients with cognitive impairment. Alzheimers Res Ther. 2019;11:32. https://doi.org/10.1186/ s13195-­019-­0488-­x. 6. Bailey M.  In secret, seniors discuss ‘rational suicide’. Kaiser Health News. 25 June 2019. https://khn.org/news/rational-­suicide-­seniors-­preemptive-­death-­medical-­aid-­in-­dying/.

1  The Ethics of Dementia Risk Reduction

13

7. Van Dyk S.  Saguenay couple’s apparent suicide pact renews call for advanced consent for medical aid in dying. CBC News. 3 Jan 2019. https://www.cbc.ca/news/canada/montreal/ saguenay-­couple-­s-­apparent-­suicide-­pact-­renews-­call-­for-­advanced-­consent-­for-­medical-­aid- ­ in-­dying-­1.4973620. 8. Knoll C. Sweethearts forever. Then came Alzheimer’s, murder and suicide. New York Times. 29 Dec 2019. https://www.nytimes.com/2019/12/29/nyregion/alzheimers-­murder-­suicide.html. 9. Stephenson C. Physician, Alzheimer’s-stricken wife commit suicide. Milwaukee J Sentinel. 2010. http://archive.jsonline.com/news/milwaukee/99074314.html/. 10. Kustura K. Murder-suicides among elderly driven by illness, depression. Dayton Beach News J. 2015. https://www.news-­journalonline.com/article/LK/20151011/News/605065688/DN. 11. Ngandu T, Lehtisalo J, Solomon A, Levälahti E, Ahtiluoto S, Antikainen R, Bäckman L, Hänninen T, Jula A, Laatikainen T, Lindström J, Mangialasche F, Paajanen T, Pajala S, Peltonen M, Rauramaa R, Stigsdotter-Neely A, Strandberg T, Tuomilehto J, Soininen H, Kivipelto M. A 2 year multidomain intervention of diet, exercise, cognitive training, and vascular risk monitoring versus control to prevent cognitive decline in at-risk elderly people (FINGER): a randomised controlled trial. Lancet. 2015;385:2255–63. 12. Centers for Disease Control and Prevention. What we eat in America, DHHS-USDA dietary survey. Updated July 2018. https://www.cdc.gov/nchs/nhanes/wweia.htm. Accessed 3 July 2019. 13. Centers for Disease Control and Prevention. National Health interview survey, 2018. Updated 30 May 2019. https://www.cdc.gov/nchs/nhis/releases/released201905.htm#7a. Accessed 3 July 2019. 14. Anderson GO, Thayer CE, AARP Foundation. Loneliness and social connections. 2010. https:// www.aarp.org/content/dam/aarp/research/surveys_statistics/life-­leisure/2018/loneliness-­ social-­connections-­2018.doi.10.26419-­2Fres.00246.001.pdf. Accessed 3 July 2019. 15. Nielson. Time flies: adults adult spend nearly half a day interacting with media. 2018. https:// www.nielsen.com/us/en/insights/article/2018/time-­flies-­us-­adults-­now-­spend-­nearly-­half-­a-­ day-­interacting-­with-­media/. Accessed 3 July 2019. 16. Cations M, Radisic G, Crotty M, Laver KE. What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys. PLoS One. 2018;13(4):e0196085. https://doi.org/10.1371/journal.pone.0196085. 17. Low LF, Anstey KJ. The public’s perception of the plausibility of dementia risk factors is not influenced by scientific evidence. Dement Geriatr Cogn Disord. 2007;23:202–6. https://doi. org/10.1159/000099038. 18. Heger I, Deckers K, van Boxtel M, de Vugt M, Hajema K, Verhey F, Köhler S.  Dementia awareness and risk perception in middle-aged and older individuals: baseline results of the MijnBreincoach survey on the association between lifestyle and brain health. BMC Public Health. 2019;19(1):678. https://doi.org/10.1186/s12889-­019-­7010-­z. 19. Norton S, Matthews FE, Barnes DE, Yaffe K, Brayne C. Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data. Lancet Neurol. 2014;13(8):788–94. https://doi.org/10.1016/S1474-­4422(14)70136-­X. 20. Lifestyle interventions provide maximum memory benefit when combined, may offset elevated Alzheimer’s Risk Due to genetics, pollution [press release]. Chicago: Alzheimer’s Association. 2019. https://www.alz.org/aaic/releases_2019/sunLIFESTYLE-­jul14.asp. Accessed 3 July 2019. 21. Gray HL, Jimenez DE, Cucciare MA, Tong HQ, Gallagher-Thompson D. Ethnic differences in beliefs regarding Alzheimer disease among dementia family caregivers. Am J Geriatr Psychiatry. 2009;17(11):925–33. https://doi.org/10.1097/JGP.0b013e3181ad4f3c. 22. Alzheimer’s Association. Myths. Updated 2019. https://www.alz.org/alzheimers-­dementia/ what-­is-­alzheimers/myths. Accessed 14 July 2019. 23. Zissimopoulos J, Crimmins E, St Clair P. The value of delaying Alzheimer’s disease onset. Forum Health Econ Policy. 2014;18(1):25–39. https://doi.org/10.1515/fhep-­2014-­0013.

14

E. Eifert

24. Alzheimer’s Association. Changing the trajectory of Alzheimer’s disease: how a treatment by 2025 saves lives and dollars. 2015. https://www.alz.org/media/documents/changing-­the-­ trajectory-­r.pdf. Accessed 14 July 2019. 25. van der Flier WM, Scheltens P. Epidemiology and risk factors of dementia. J Neurol Neurosurg Psychiatry. 2005;76:2–7. 26. WebMD.  What is dementia? 2017. https://www.webmd.com/alzheimers/types-­dementia#1. Accessed 14 July 2019. 27. Alzheimer’s Association. Types of dementia. Updated 2019. https://www.alz.org/alzheimers-­ dementia/what-­is-­dementia/types-­of-­dementia. Accessed 14 July 2019. 28. National Institute on Aging. What is mixed dementia? Causes and diagnosis. Updated 31 Dec 2017. https://www.nia.nih.gov/health/what-­mixed-­dementia-­causes-­and-­diagnosis. Accessed 14 July 2019. 29. World Health Organization. Risk factors. Updated 2019. https://www.who.int/topics/risk_factors/en/. Accessed 14 July 2019. 30. World Health Organization. Determinants (risk and protective factors) indicators. 2004. https:// www.who.int/hiv/pub/me/en/me_prev_ch4.pdf. Accessed 2 Aug 2019. 31. World Health Organization. Risk reduction of cognitive decline and dementia: WHO guidelines. 2019. https://www.who.int/mental_health/neurology/dementia/guidelines_risk_reduction/en/. Accessed 2 Aug 2019. 32. Richmond JB. Healthy people: The Surgeon General’s report on health promotion and disease prevention. 1979. https://files.eric.ed.gov/fulltext/ED186357.pdf. Accessed 12 March 2020. 33. Tannenbaum MB, Hepler J, Zimmerman RS, et  al. Appealing to fear: a meta-analysis of fear appeal effectiveness and theories. Psychol Bull. 2015;141(6):1178–204. https://doi. org/10.1037/a0039729. 34. Witte K, Allen M.  A meta-analysis of fear appeals: implications for effective public health campaigns. Health Educ Behav. 2000;27(5):591–615. 35. Reed P, Carson J, Gibb Z. Transcending the tragedy discourse of dementia: an ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA J Ethics. 2017;19(7):693–703. https://doi.org/10.1001/journalofethics.2017.19.7.msoc1-­1707. 36. Martin MW. Responsibility for health and blaming victims. J Med Hum. 2001;22(2):95–114. https://doi.org/10.1023/A:1009074811781. 37. Turnock BJ. Essentials of public health. 3rd ed. Jones & Bartlett Learning: Burlington; 2016. 38. Institute of Medicine (US) Committee on Assuring the Health of the Public in the 21st Century. The future of the Public’s health in the 21st century. Washington, DC: National Academies Press; 2002. 39. Yaffe K.  Modifiable risk factors and prevention of dementia: what is the latest evidence? JAMA Intern Med. 2018;178(2):281–2. https://doi.org/10.1001/jamainternmed.2017.7299. 40. Hankey GJ.  Public health interventions for decreasing dementia risk. JAMA Neurol. 2018;75(1):11–2. https://doi.org/10.1001/jamaneurol.2017.3303. 41. Bhome R, Berry AJ, Huntley JD, Howard RJ. Interventions for subjective cognitive decline: systematic review and meta-analysis. BMJ Open. 2018;8:e021610. https://doi.org/10.1136/ bmjopen-­2018-­021610. 42. Dworkin G. Paternalism. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. 2019. https://plato.stanford.edu/archives/fall2019/entries/paternalism/. Accessed 15 Jan 2020. 43. Mill JS. Liberty. London: Longmans, Green, and Company; 1865. p. 223. 44. Kelley AS, McGarry K, Gorges R, Skinner JS. The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med. 2015;163(10):729–36. https://doi. org/10.7326/M15-­0381. 45. Alzheimer’s Association. Facts and figures. Updated 2019. https://www.alz.org/alzheimers-­ dementia/facts-­figures. Accessed 5 Aug 2019. 46. Pyenson B, Sawhney TG, Steffens C, Rotter D, Peschin S, Scott J. Jenkins. The real-world Medicare costs of Alzheimer’s disease: considerations for policy and care. J Manag Care Spec Pharm. 2019;25(7):800–9.

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47. Genworth Financial. Cost of care survey 2019. 2019. https://www.genworth.com/aging-­and-­ you/finances/cost-­of-­care.html. Accessed 15 Jan 2020. 48. Coe N, Skira MM, Larson EB. A comprehensive measure of the costs of caring for a parent: differences according to functional status. J Am Geriatr Soc. 2018;66(10):2003–8. https://doi. org/10.1111/jgs.15552. Epub 2018 Sep 17 49. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families caring for an aging America. Washington, DC: National Academies Press; 2016. 50. National Alliance of Caregiving; United Hospital Fund. Young caregivers in the U.S. 2005. https://www.caregiving.org/data/youngcaregivers.pdf. Accessed 15 Jan 2020. 51. Trust for America’s Health. Prevention for a healthier America: investments in disease prevention yield significant savings, stronger communities. 2008. https://www.preventioninstitute. org/publications/prevention-­for-­a-­healthier-­america-­investments-­in-­disease-­prevention-­yield-­ significant-­savings-­stronger-­communities. Accessed 15 Jan 2020.

2

Refined Discourse Ethics and the Social Inclusion of People with Dementia Petr Frantik

Contents 2.1  2.2  2.3  2.4  2.5 

Introduction The Initial Problem: The Exclusion of Persons with Dementia from Discourse Discourse Ethics: Including or Excluding Persons with Dementia? Refining Discourse Ethics to Include Persons with Dementia Reconsidering Language, Communication, and Rationality of Persons with Dementia 2.6  Concrete Approaches to Include People with Dementia in Discourse 2.7  Conclusion References

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Abstract

This chapter examines whether and how refined discourse ethics can promote the social inclusion of people with dementia. The starting point is the fact that people with dementia are often barred from participating in social discourse because they may not share the normalized form of rationality. In order to tackle such discrimination and stigma, this chapter considers discourse ethics as a means to achieve greater inclusion of persons with dementia. First, I argue that the concepts of communicative rationality and of the ideal speech situation offer promising starting points for a general strengthening of participation rights, but are still too narrowly defined to include people with dementia as members of the discourse. I then refine discourse ethics approaches by refining these underlying concepts. After that, current scientific findings about the communication methods of people with dementia are presented, emphasizing their competence to

P. Frantik (*) Mercator Institute for Literacy and Language Education, University of Cologne, Cologne, Germany e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_2

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contribute important claims. Based on these findings, I suggest ways to include persons with dementia in discourse, thus strengthening them as rightful participants in shared decision-making processes. Ultimately, (renewed) discourse ethics theories are identified as important tools to empower people with dementia.

2.1

Introduction

The right to participation and inclusion is widely discussed with respect to various groups of people. Society as a whole should ensure the existence of conditions that permit every person or group to make claims in public discourses. However, persons with dementia are an important group whose voice is usually silenced and who are excluded from many important negotiations. Those with severe dementia are especially deprived of their right to participate in discourses that impact their life situation. This chapter argues that persons at all stages of dementia should be given the right and opportunity to participate appropriately in decision-making processes about their own care and medical treatment, as well as to retain a voice in social and political debates. I begin by discussing some common processes of exclusion and their consequences for people with dementia. After that, I turn to the realm of discourse ethics, examining both its potential to enhance the participation of people with dementia and its possible risk of excluding them due to its underlying concepts of communicative reason and the idea of an ideal speech situation. To address this risk, in the fourth section these two basic concepts are critically discussed and further developed. I call for a widening of Habermasian discourse ethics principles as a means to include people with dementia in conversations relevant to them, while not sacrificing reasons-based deliberative standards. Section 2.5 provides an overview of the impact of dementia on language and rationality. In this section, deficit-­ oriented perspectives are critically examined, a competence-oriented view of the communicative abilities of people with dementia is pursued, and the need for alternative concepts and forms of communication is emphasized. In the sixth section, I present concrete ways to include people with dementia more fully in different types of discourses, introducing alternative means of communication. I conclude with some summary remarks.

2.2

 he Initial Problem: The Exclusion of Persons T with Dementia from Discourse

Participation in society is a fundamental right. As the United Nations Office of the High Commissioner for Human Rights [1] has stated: The right to directly and indirectly participate in political and public life is important in empowering individuals and groups, and is one of the core elements of human rights-based approaches aimed at eliminating marginalization and discrimination. Participation rights

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are inextricably linked to other human rights such as the rights to peaceful assembly and association, freedom of expression and opinion and the rights to education and to information.

However, people with dementia are frequently excluded from discourses, both those about general social and moral issues and often also those about their own medical care and treatment. On the one hand, this result occurs because of the mechanisms of institutional exclusion, which impede people’s participation in many important discourses. Many people with dementia live in nursing homes or dedicated dementia clinics, where they are treated according to their special needs but have little contact with the outside world. In addition, interlocutors, companions, relatives, and friends tend to pay little attention to the remarks of people with dementia, even if they are physically present in communicative situations [2, p. 2]. “A diagnosis of dementia leads clinicians, family, friends, and the community to take a negative view of the capabilities for decision making and independence of people living with dementia” [3, p. 696]. As a consequence, people with dementia are doubly affected by exclusion. In addition to inducing general stigmatization and stereotyping related to ageism, the diagnosis of dementia is strongly associated with reduced cognitive performance and, thus, with reduced decision-making ability as well [4, p. 370]. This stigma is associated with a sense of losing one’s independence. The 2012 World Alzheimer Report: Overcoming the stigma of dementia by Alzheimer Disease International (ADI) offers valuable insight into the social exclusion experienced by people with dementia. The main focus of this report was to identify the stigmatizing experiences of people with dementia and their family members who serve as caregivers. To obtain a global sample, an anonymous online survey was conducted among 2500 people with dementia1 and caregivers in 54 countries [5, p. 21]. The survey documented the extent to which Alzheimer’s patients and their relatives felt excluded from society. Forty percent of the participants stated that they did not feel that people with dementia are included in daily life [5, p. 31]. General lack of understanding of how to interact with persons who have dementia was cited as a main reason for this exclusion [5, p. 32]. The role of family members in facilitating inclusion was considered very important, but some people with dementia felt excluded even among their own friends and family [5, p. 36]. For example, visits often become increasingly rare as some family members have difficulty adjusting to changes occurring in the person with dementia [5, p. 35]. Overall, people with dementia2 often expressed a desire to stay connected with the lives they 1  The survey was conducted in English, Spanish, Chinese and Greek. The participants with dementia generally were in early stages of the disease, as the nature of the survey would prevent the participation of people in later stages. However, some responses were collected from service providers who interviewed people with dementia individually. Diagnoses reported in the English survey included mild cognitive impairment (MCI) (10%), Alzheimer’s disease (55%), vascular dementia (12%) and fronto-temporal dementia (FTD) (7%). 2  The information was obtained from semi-structured interviews with 24 participants who had been diagnosed with dementia, but the participants were required “to demonstrate their understanding of study participation after this was explained, by re-articulating the study’s purpose and describ-

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had led before their diagnosis and contended that this desire for connection should be accepted by other people in the community [6, p. 431, 7, pp. 19–20]. When persons with dementia perceive that they are viewed as unable to make decisions on their own behalf, they often feel “devalued as people” [6, p. 429]. This becomes evident, for example, when a person with dementia visits a doctor along with a caregiver or other person and the doctor poses questions only to the latter. In such situations, the denial of direct communication is experienced as a loss of self-esteem and trust. In many countries, social prejudices and stigmatization of people with dementia are also found throughout care systems and medical staff [8, p. 222]. For example, joint decision-making processes, such as decisions on treatment choices, are not based on equal communication. If only the accompanying person is addressed during a consultation with medical staff, people with dementia often feel strongly devalued and experience deep grief [6, p. 429]. It is precisely during these very difficult situations—when people need to participate in respectful and sensitive communication so they can express their needs, emotions, and fears related to a progressive illness—that communication is denied to them. As one effect of such exclusion and stigma, 24% of respondents indicated that they concealed their diagnosis from others so as to avoid the risk of being stigmatized [5, p. 24]. One survey participant commented, “I have found that if I have disclosed that I have dementia, my thoughts, opinions, conversations are discounted and dismissed” [5, p. 24]. This finding is also confirmed by other sources. For example, during various town hall meetings in the United States,3 many persons with dementia reported that they hesitated to admit their disease for fear of a negative public reaction and social isolation [7]. This behavior is particularly problematic because it prevents others from understanding the needs of persons with dementia and from providing person-centered treatment and care. The insecurity among persons with dementia that results from communication difficulties is reinforced on two levels: by the awareness of worsening physical impairment and by the denial of communication within many social contexts. These experiences of diminishing capabilities, on the one hand, and the attributions and exclusions by society on the other have a serious impact on the affected people’s self-image, which can lead to feelings of alienation, isolation, and uselessness and in turn to depression. Indeed, empirical research has shown a relationship between isolation and depression among the elderly [9]. It is therefore essential for the well-­ being of older persons with dementia that they be recognized as individuals with important things to say. Such recognition helps to stabilize their self-esteem and prevent depression, loneliness, and anxiety [10, p. 239].

ing how they would be able to contribute” [6, p. 428]. This requirement means that the results cannot be extended unreservedly to people with severe dementia; it also illustrates that people with severe dementia are often excluded as participants in scientific studies due to various access criteria. 3  The town hall meetings took place between July 2007 and May 2008. A total of 301 persons with early-stage Alzheimer’s or dementia participated in the meetings.

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Thus, we must closely examine the psychosocial aspects of dementia and the question of how communication and participation are related to the well-being of people suffering from this disease. How people with dementia are addressed impacts not only their position in society but also whether they regard themselves as competent persons who can still contribute to negotiations about their everyday life [4, p. 367]. A negative influence on self-perception can make communication even more difficult than it already is. Ultimately, people with dementia should be empowered to speak for themselves [11]. To better recognize the rights of people with dementia and those who care for them, researchers and practitioners should pursue the development of various ways of communicating with them—including, insofar as possible, even those in late stages of dementia. This requires offering different levels and forms of support. The ADI report and other studies stress the need to reduce the stigmatization and isolation of people with dementia. Dementia patients should be regarded as equal members of society and allowed to be actively involved in their local communities [5, p. 75]. Therefore, philosophical ethics must meet the challenge of promoting the moral equality of people with dementia, while at the same time taking into account their individuality, special life circumstances, and distinguishing features, especially with regard to how they communicate. However, philosophy itself has in some respects contributed to the nonrecognition of persons with dementia, especially those in the later stages of the disease (as well as persons with severe intellectual disabilities) as discourse participants. One reason is that many philosophical and ethical systems posit a strong norm of requiring intelligible speech and rational argumentation for participation in discourse. To understand the processes of social exclusion from discourse on the basis of concepts of reason, I will make some brief remarks on the role of reason within philosophy that are relevant to our context. Language has always been a subject of philosophical reflection, but the importance of language for thought was especially emphasized during the so-called linguistic turn. Thinkers during that philosophical phase paid particular attention to the question of how the structures of language shape our ability to perceive and represent the world. Questions such as the logic and limits of language in relation to the limits of human thought about the world, and about what can or cannot be clearly said and represented through language, received great attention (see, for example, [12]). Since then, conceptual thinking has been regarded as strongly interwoven with language, and a spectrum of different theories has developed. From the perspective of inclusion of people with dementia, it is important to critically analyze theories that equate language and thought, especially those claiming that only a being who can interpret speech is capable of thought [13, p. 170]. As important as language analysis is for understanding thought, equating language capacity with thought capacity in this way risks implying that people with dementia who are unable to speak cannot do any thinking at all. Moreover, mind–body dualism, especially in European philosophical traditions, led to a separation of mental activities from bodily or emotional phenomena [14]. The concept of pure rational

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thinking without a body, however, is an abstract idea and cannot be sustained ontologically, as thinking is always bound to psychosomatic processes [15]. Nevertheless, the emphasis of many philosophical theories on language and their concept of rationality as separate from emotion and the body are still very influential and make it difficult for people with dementia or intellectual impairments to have their voices heard in important discourses.

2.3

 iscourse Ethics: Including or Excluding Persons D with Dementia?

In this section, I will examine whether and how the basic discourse ethical concepts of communicative rationality and of an ideal speech situation can contribute to the inclusion of people with dementia, along with what risks of exclusion may be inherent in these concepts. Since various discourse ethical thinkers differ to some extent in their interpretation of these concepts, I will focus on Jürgen Habermas’s approach for simplicity. A central aspect of Habermas’ theory is that every human being undergoes individuation through socialization, which takes place through the medium of language [16–18]. Habermas conceived his understanding of language-dependent subjects through critical examination of hermeneutical philosophy, the linguistic turn, especially Wittgenstein, as well as the speech act theory of Austin and Searle [19, p.  225]. By examining the texts of these philosophies, Habermas developed a concept of the communicative interconnectedness of all human subjects. For him, intersubjectivity, which is rooted in the structures of language, unavoidably precedes every subject formation, social action, and social integration [20, p. 18]. Every human being is participating in a shared, linguistic articulated lifeworld and is fundamentally dependent on linguistic interaction with other people to develop as a person [21, p. 160]. Knowledge and impartial perspectives can be developed only when people make validity claims4 that others can test. On this basis, Habermas wishes to reestablish a universalistic, impartial reference point from which we can assert moral and human rights in an intersubjectively refined ethics. For this purpose, he first develops a concept of communicative rationality. Habermas shifts the concepts of rationality and rationality-based morality from an individual structure of consciousness to an intersubjective form of communicative rationality, from which it follows that no person can establish objectively valid norms solely on the basis of monological reason. Of course, each individual can develop hypotheses about morally sound norms,

4  The Concept of validity claims (Geltungsanspruch in German) is central to Habermas’ work and includes claims to truth, normative rightness and sincerity. Therefore, normative rightness claims are a specific type of validity claim that are particularly important for practical discourses. According to Habermas, validity claims are inherent in every speech act used for social coordination and can be criticized or justified by others [22].

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but for a normative rightness claim to be considered valid, it must be examined and scrutinized in discourse with others. With this background, Habermas formulates his principle of the universalization of discourse ethics: Every valid norm must satisfy the condition that all affected can accept the consequences and the side effects its general observance can be anticipated to have for the satisfaction of everyone’s interests (and these consequences are preferred to those of known alternative possibilities for regulation). [21, p. 65]

The right of each individual to participate in discourses that are relevant to himself or herself is further underpinned by the catalogue of presuppositions of argumentation, which was originally conceived by Robert Alexy and then supported by Habermas [21, p. 87]. These presuppositions are divided into three levels [21, pp. 87–89]: 1. Logical level of products 1. No speaker may contradict himself. 2. Every speaker who applies predicate F to object A must be prepared to apply F to all other objects resembling A in all relevant aspects. 3. Different speakers may not use the same expression with different meanings. 2. Dialectical level of procedures. 1. Every speaker may assert only what he really believes. 2. A person who disputes a proposition or norm not under discussion must provide a reason for wanting to do so. 3. Rhetorical level of processes 1. Every subject who has the competence to speak and act is allowed to take part in a discourse. 2. (a) Everyone is allowed to question any assertion whatsoever. (b)  Everyone is allowed to introduce any assertion whatsoever into the discourse. (c) Everyone is allowed to express his or her attitudes, desires, and needs. 3. No speaker may be prevented, by internal or external coercion, from exercising his or her rights as laid down in (3.1) and (3.2). These rules are connected with the idea of an ideal speech situation, which is characterized by freedom from internal and external constraints and by symmetry of power [23, p.  177]. These presuppositions of the ideal speech situation exist implicitly in our language practices within real-life discourse, since we need them for mutual communication, even if we apply them unconsciously. Since these are empirical presuppositions, the ideal speech situation thus has both an empirical and an ideal dimension. In between the two, so to speak, lies the real discourse, in which, of course, not everyone actually adheres to the rules of the ideal speech situation. However, the ideal speech situation is sufficiently definable to serve as a regulative idea that provides moral orientation [24, p. 898]. This can be illustrated by presupposition (2.1), the requirement that one should assert only what one believes to be true and the nature of a lie. For a lie to be

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effective, the liar himself or herself must presuppose a claim to truth within the discourse because manipulation by a lie would not be successful without an underlying claim to truth and an assumption that each speaker is obligated to say the truth or keep a promise. Otherwise, the liar’s dialogue partner would simply never believe anything the liar says. Neither a lie nor an honest promise could be accepted, and communication would collapse. The claim of truth is therefore prior to communication and also prior to strategic manipulation. However, this fact does not mean that no lies are told in actual discourse; for example, political discourses are permeated by strategic verbal maneuvers, if not by outright lies. But when people realize the fundamental dependence of individuals on communication within the community, as well as the necessity of claiming truth for successful communication, this realization leads to an understanding of a moral duty to tell the truth. These uncovered validity claims, then, guide us further toward the concept of an ideal speech situation that is in accord with the rules presented above. Thus, the ideal speech situation should be understood as implicitly yet empirically presupposed and, at the same time, as an ideal and counterfactual moral orientation to which real discourses should be brought as close as possible. The realization of an ideal speech situation and the principle of universalization cannot, in fact, ever be completely achieved. For example, future generations not yet born have no way to participate in today’s discourses on climate change, even though they may be more deeply affected by the consequences of our decisions than anyone living today. However, the ideal speech situation can orient us as a regulative idea toward striving for discourses that are as free of domination as possible, with the greatest possible participation opportunities. In particular, it can also lead us to think about different ways of including in discourse those people who have so far been excluded for various reasons. The general right to participate formulated in discourse ethics is crucial for the participation of persons with dementia or other disabilities, since each human being’s functioning depends on social and communicative inclusion. In this respect, discourse ethics is supported in the context of long-term and residential care (see [24, pp.  900–901]) and by several rehabilitation scientists (e.g., [25, p.  79, 26, p. 159]). However, other rehabilitation scientists object that at the core of this theory is a concept of a competent speaker that might exclude people with severe mental disabilities all over again [25, p. 79]. A too-narrow conception of communicative rationality thus carries with it the risk that people with dementia may suffer exclusion because they do not fit the abovementioned rules of discourse. This risk becomes obvious when we consider rule (3.1), for example, because one might deny that people in later stages of dementia still have sufficient competence to speak. This is particularly the case if the rules on the logical semantic level, (1.1) through (1.3), are additionally regarded as prerequisites for inclusion in discourse. People with severe dementia or intellectual disabilities are unlikely to develop sophisticated and abstract arguments, even though they are strongly dependent on decisions made in current discourses. In this respect, they are no longer in a condition to follow the requirements of the rules of discourse, and this incapacity results in their exclusion. Therefore, a discrepancy arises between the principle

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of taking into account the validity of the claims of all persons concerned and the de facto exclusion of some people because they do not fulfill the aforementioned prerequisites for participation. An ethic that generally aims to emancipate disadvantaged people could instead exclude some participants by deeming their way of asserting their claims inadequate, even though their lives are directly affected by the decisions made in particular discourses. On the other hand, the requirement that, in moral discourses, normative rightness claims should be negotiated as impartially as possible on the basis of communication and reason remains important. Especially in the current so-called post-factual age, which is full of increasingly reason-denying political and social discourses, it is crucial to uphold reason and intersubjectivity as touchstones for important decisions [27, p. 69]. Also, from the perspective of individuals with dementia, it is important to recognize them not only as holders of rights to care but also as persons who can still contribute rational claims to reason-based medical discourses regarding their own care, as well as to moral discourse relevant for society as a whole. So, the crucial question becomes how discourse ethics can extend its concepts of communicative rationality and the ideal speech situation, and thus its emancipatory and inclusive aims, to people with dementia without sacrificing its standards for the rational negotiation of norms.

2.4

 efining Discourse Ethics to Include Persons R with Dementia

On the basis of the preceding considerations, we will now consider how a widening of discourse ethics to encompass the communicative potential of people with dementia is possible. A first important step in this direction is to scrutinize the underlying concepts of communicative rationality and the ideal speech situation. As a starting point, I will refer to the Foucault–Habermas debate. Although the respective discourse approaches of Foucault and Habermas were and are often regarded as contrary or even irreconcilable, and although the discussion between them was full of misunderstandings and became “deadlocked,” this debate represents an essential tension that is still highly relevant today—namely, the oppositions between consensus and conflict, between ideals and reality, and between rationality and power [28, pp. 2–3]. Moreover, in his analyses of power discourses, Foucault uncovered social mechanisms of exclusion based on diverse normalization discourses that offer a suitable touchstone for a scrutiny of discourse ethics with regard to the abovementioned problem of the exclusion of persons with dementia. From Habermas’s side, the crucial concern relevant for our purposes was that he saw a danger of relativism in Foucault’s theories, which could endanger the negotiation of normative rightness claims based on rationality. Against the background of this tension, I propose a way in which discourse ethics could draw on Foucault’s power-critical perspective without sacrificing its own ethical and rational standards. Let us first briefly consider what Foucauldian power-critical discourse analysis points to. Foucault [29] advocated the thesis that language develops within historical

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discourses and is always shaped by power formations. In this manner, words and categorizations emerge and are forced on the individual person, assigning him or her a position in a hierarchical social power structure. People who do not conform to the norms prevailing at a certain time period are subordinated and sometimes excluded from “normal” society by being assigned to special institutions. There is no way to avoid making categorizations, since we develop our thinking as individuals in a language that is bound to these discourses. However, we can examine the social and historical contexts in which the categories were developed and critically question their appropriateness. On this basis, for example, researchers in critical disability studies have identified the categorization of people as disabled and their assignment to special homes and schools as a result of powerful discourses of normalization, and they have questioned the hierarchical dualism by which people are identified as either “disabled” or “nondisabled” solely on a medical basis [30]. Such critical analyses of terms, categories, and discourses of exclusion are also of great importance for people with dementia, as will be developed in more detail below. An approach must therefore be found to integrate this power-critical perspective into discourse ethics. Different attempts have been made to counter the presumed incompatibility of different discourse theories of rationality and power and to regard them in a more complementary way [31, p. 242], so as “to get rid of a deep-seated philosophical prejudice. The prejudice is that reason and power are totally antithetical” [32]. Mutual comparison and dialogue might offer a chance for further development of discourse theories in regard to power and rationality. For example, Amy Allen states: The entanglement of power and validity only poses a serious problem if one assumes that there are only two possible ways of understanding the relationship between power and validity: either validity is reduced to nothing more than power and autonomy to nothing more than disciplinary subjection—a position that Habermas rightly sees as normatively and politically disastrous but wrongly imputes to Foucault—or validity is understood as wholly distinct from and unsullied by power relations—in which case the purity of pure reason slips in through the back door, a position that Habermas himself aims to avoid. But there is a third, and better, possibility: to give up on the demand for purity altogether. Doing so would mean that acknowledging the unavoidable entanglement of validity and power, but without reducing the former to the latter. [28, p. 26]

A more contextualistic recasting of Habermas’s metatheoretical theory of the status of normative idealizations, by means of taking into account social power discourses, need not necessarily result in a collapse into moral nihilism or immorality, as Habermas seems to fear. But the recognition that the idealizations of discourse ethics are inevitably entangled with power and embedded in a particular historical, social, and cultural context requires that they be repeatedly critically examined and considered as revisable [28, p. 27]. The significance of communicative rationality for the ethical negotiation of different normative rightness claims remains central, but it must always be critically revised where it does not meet its own interests of emancipation and inclusion and/ or overlooks powerful sociohistorical categorizations or discourses. This allows for

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an intermediate path between theories with a narrow understanding of rationality (which exclude persons with dementia), on one hand, and relativistic approaches that often abandon the rational negotiation of normative rightness claims on the other hand. On this basis, a discourse ethical perspective should also scrutinize dualistic attributions such as “can speak” versus “cannot speak” or distinctions grounded in whether someone can or (allegedly) cannot participate in discourse. This scrutiny must occur not only in relation to society but also with regard to the perspective’s own philosophical foundations. Concerning the ideal speech situation, we must question in what way communicative reason should be conceived as a prerequisite for participation in discourse, as this also has an impact on how people are treated in real discourses. Whether nonverbal emotional utterances are regarded only as disturbances to be avoided or ignored or as a necessary complement to intelligible speech—one that can, for example, keep us from falling into a cold technocracy—is crucial to the inclusion of people with dementia. To develop a refined conception of an ideal speech situation, we must explore afresh which implicit features of communication are necessary for mutual understanding and a functioning moral community. Habermas’s reason for limiting claims within the ideal speech situation through a narrow understanding of communicative rationality is that he wants to ensure transparency and coherence in discourse. He regards linguistic speech, especially rational argument, as the only mode of communication in which the same expressions have the same meaning for multiple speakers, since the need to understand each other’s speech pushes dialogue partners to establish coherence between intent, speech, and interpretation [33, p. 214]. However, it is a matter of debate whether this exclusion of other forms of communication necessarily increases the intelligibility of the discourse. Using several forms of communication simultaneously can often support mutual understanding, and it may enable a more comprehensive understanding of the grounds for various claims. The exclusion of nonrational and nonverbal expressions may minimize possible irritations, but it also eliminates important information and means of communication: Recognizing the complexities of communication, both linguistic and bodily, could alternatively promote a more reflexive dialogue. … Where Habermas envisions confusion and the collapse of listening, embodied speech can alternatively promote increased attentiveness and humility, forcing all participants to wrestle with the complexities of both linguistic and bodily communication. [33, p. 218]

From this it follows, for the conception of an ideal speech situation, that various forms of communication must be regarded as indispensable components of a comprehensive and inclusive discourse. Emotional or physical expressions and associative speech made by people with dementia are not disruptive factors that must be avoided by all means; rather, they constitute important contributions and perspectives. Here, however, the role of reason should not be diminished. Just as emotional and physical utterances supplement rational argumentation, emotional utterances must always be rationally reviewed in joint and multilayered discussions. This widened and differentiated understanding of communicative reason and discourse can

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serve as a foundation for interaction with and treatment of people with dementia. Taking this step certainly makes communication processes more complex, and it also enriches them in terms of intersubjectivity and by expressing a serious intent to include people with dementia. Building on the critical review outlined above at a philosophical level, discourse ethical perspectives can prompt further analysis on a societal level: By adopting theories of power-critique, we can identify how power discourses have shaped social and medical discourses, medical treatment, and care work and thus can critically uncover mechanisms of social exclusion (for an example of such an analysis, see [34]). Furthermore, the underlying categorizations and terms within such discourses that might lead to labeling, “othering,” and eventually exclusion can be critically examined. This process enables new perspectives on how persons with dementia communicate and, for example, what forms of rationality can be uncovered behind seemingly irrational utterances and included meaningfully in discourses. Building on such analyses, it is then necessary to develop demands for participation rights from a discourse ethical perspective, along with concepts for making the requirements as feasible as possible. These steps will be further illustrated and discussed in the next two sections.

2.5

 econsidering Language, Communication, R and Rationality of Persons with Dementia

To reflect on the participation of people with dementia in discourses, we must first consider their typical forms of communication and thinking. Therefore, in this section, I will first outline some medical aspects of how dementia influences language and rationality. I will then examine these considerations critically against the background of social and medical discourses about people with dementia, so as to gain a more competence-oriented view of their communication skills. Dementia has various effects on the cerebrum, the part of the brain where important higher mental processes such as consciousness, sensory perception, movement, and attention take place. Additionally, thought, language, comprehension, and memory are generated here. The cerebrum consists of two hemispheres and four main areas: the frontal, parietal, temporal, and occipital lobes. To assess the effect of dementia on human thought and language, we need to know which brain regions are most affected and what significance those regions have in mental processes. With regard to language, memory, and recognition, the frontal and temporal lobes are particularly important. Damage to these regions therefore influences not only the use of language but also the ability to comprehend situations and contexts [35, p. 1]. Of course, the specific effects can vary depending on the form of dementia and the extent of damage. In long-term memory systems, the lexical, episodic, and semantic memory subsystems are differentiated [36, p. 601]. Lexical memory impacts are associated with problems in recalling words. People affected in this way often try to replace the concrete terms they cannot remember with more generalized and abstract expressions

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or pronouns, such as it, that, or there; as a result, their contributions to discussions become less precise [35, p. 1]. When episodic memory is impacted, affected people struggle to remember the exact time or sequence of personal experiences, making it difficult to describe complex issues or autobiographical events. Finally, semantic memory is responsible for recalling concepts and knowledge of the world, so those affected by semantic dementia, which affects the frontotemporal region, experience loss of conceptualization ability, and loss of the capacity to transform their ideas into words. In addition, people with dementia often forget what they or their interlocutors have said immediately prior, due to the loss of short-term memory [35, p. 1]. For this reason, they often repeat themselves or make redundant statements. They also find it difficult to follow a longer conversation, use complex syntactic structures, and provide facts or examples to substantiate their statements. These separate memory systems interact with each other, although the exact mechanisms of action are still undetermined [36, p. 602]. However, while reviewing scientific research on the communicative ability of people with dementia, we must also reflect on the criteria and underlying understanding of language that are used. In describing persons with dementia, medical and also public discourses often highlight single characteristics in a one-sided and deficit-oriented way, so that “people with dementia are still being positioned as ‘other’ as though the dementia experience is the only aspect of the person’s identity that warrants attention” [37, p. 58]. This is related to the focus on cognitive skills in our society and leads to misleading images of the life situation of people with dementia [38, p. 37]. The debates over dementia are dominated by a “tragedy discourse” in which negative stereotypes predominate, and dementia is associated only with suffering and drama, leading to “dehumanizing practices such as objectification, exclusion, silencing and so forth” [39, p. 6]. These discourses thus influence how we perceive people with dementia and have an impact not only on social and medical discourses but also potentially on our understanding of the language ability of people with dementia. For example, although tests of semantic constructions or word usage undoubtedly provide important insights into the linguistic ability of people with dementia, an emphasis on word-based tests could overlook the possible value of more complex modes of communication [40, p. 637]. A “continuing emphasis by speech-language researchers on the clinical and biomedical aspects of language in dementia typically exclude psychosocial contexts for language use, analysis and interpretation, an exclusion that is only recently beginning to change” [41, p. 3]. It is therefore important to shift from a deficit-oriented viewpoint to a competence-­ oriented and holistic understanding of how people with dementia communicate. From this perspective, important insights have been gained in recent years that are relevant to the topic of this chapter. First, it is crucial to acknowledge that emotions, the body, and language are always interrelated in humans. Especially with regard to severe communication problems during later stages, there is “the necessity of extending ourselves emotionally to people with Alzheimer’s, of empathetically attuning ourselves to their

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emotional needs, desires and concerns; however, ‘unrealistic’ these may seem according to our own ‘reality’.” [38, p. 2]. Emotions seem pertinent to thought for several reasons. Emotions create a self-reference that enables humans to deal with their own cognitive states and are therefore a kind of metacognition [42, p. 131]. For example, the prerequisites for feeling fear lie in the body; this is not a linguistic phenomenon. If we imagine a human being without speech, we can assume that their fear is similar to the fear we feel because our organisms function in a biologically analogous way. But even though fear is not a linguistic phenomenon, our typical expression of it is embedded in a linguistic system from the beginning. People can talk to each other about their fears, classify them, interpret them, give reasons for them, or express reassurance [43, p. 57]. Therefore, empirical studies of the communication modes of persons with severe dementia including those who do not no longer speak are of great relevance. Although research within this field needs to be further developed, there is already some evidence that people with severe dementia do not completely lose their ability to communicate nonverbally and are still able to create meaningful communication by expressing their needs, desires, and aspirations through nonverbal behavior [10, p. 239]. Even people living with restricted or absent speech due to severe dementia can remain dialogue partners by expressing themselves through words, vocal noises, facial expressions, and body gestures and their communication can be enhanced by reciprocal response and interpretation of their utterances [40, p. 637]. Moreover, people with advanced dementia often manage to perceive when their social cues are overlooked, and they sometimes respond by withdrawing or pushing their inattentive interlocutor away [44, p. 1267]. This indicates that, at least in some cases, people with advanced dementia, although seemingly unable to participate in rational discussions, can still notice very clearly if their point of view is not being sufficiently taken into consideration. Thinking should also be considered as a psychosomatic activity in the body, which should be taken seriously as a field of thought in philosophy. From a post-­ Kantian perspective that overcomes mind–body dualism, it can be argued that the body a priori precedes all acts of thought and, by its existence in space and time, creates and shapes our ideas and our thinking [15, p. 150]. “Understanding selfhood as embodied can enrich the discourse on Alzheimer’s by illuminating dimensions of personhood that persist despite the ravages inflicted by neuropathology. Personhood persists as an embodied dimension of human existence and, as such, must be embraced in dementia care” [57, p. 567]. The experiences of a long-life span, even if not all of them are still consciously remembered, have shaped the world view and attitudes of persons with dementia. The basic emotional orientation and opinions that a person has developed over many years often do not change or disappear with dementia, but remain rooted in one’s unique personality [45, p. 302]. Therefore, one could speak of a kind of embodied rationality based on the person’s reflections and experiences across the course of their life history. To properly consider the special interests, knowledge, and rationality of people with dementia in discourse, it is therefore necessary to find different ways of

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communication. In the following section, I present some practical approaches that aim to open up discourses in order to include people with dementia.

2.6

 oncrete Approaches to Include People with Dementia C in Discourse

This section returns to our initial problem—namely, the frequent exclusion of people with dementia from discourses. A renewed form of discourse ethics and a competence-oriented perception of the communication of people with dementia can now be intertwined to strengthen this group’s participation rights. On a practical level, it becomes necessary to make real conditions as close as possible to a speech situation ideal for persons with dementia, as it is our duty as rational discourse participants to help them find and express their voices. This requires a wider understanding of the interactional competencies of people with dementia. The underlying engagement of people with dementia in discussions could be much more frequent and multilayered than is generally assumed, especially if different forms of verbal and nonverbal resources are deployed [2, p. 17]. The task at hand is to build a graded, inclusive network, on the basis of multilayered differentiations, that enables participation for all but that at the same time recognizes the different needs and individual potentials of people with dementia. This different means of communication must also be adapted according to what form of discourse is involved—for example, whether the communication is about one’s own concrete care or about having a voice in general social and moral discourses. In the following discussion, some possibilities for communication with people who have dementia are outlined. Thereby, I will start with some basic approaches and progress toward advanced interventions that involve individuals in an even more intersubjective and collaborative way. To find a way to include the interests of persons with severe cognitive impairments in discourse, many theorists have developed the idea of advocatory ethics [46, 47].5 The aim is to articulate statements and utterances made by persons with dementia in the form of rational claims and then to transfer them into ethical and sociopolitical discourses. This moral representation is usually provided either by relatives or unrelated professionals who are entrusted with a permanent power of attorney by persons with dementia or appointed as guardians by the courts [48, p. 1046]. Moral representatives must reflect on how hard it is for them to understand the living reality of people with dementia. They are influenced by their own interests, attitudes, ideas, and needs, and these influences can distort their interpretation of various utterances [49, p. 801]. But people perceive different circumstances very 5  Most research on advocatory ethics focuses on people with disabilities or unborn future generations in the context of future responsibility. Although the experience of people with dementia is not identical to the situation of these other groups, there are significant parallels with regard to the challenge of surrogate decision making.

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differently, and “our framing of people with Alzheimer’s may have more to do with our anxieties about our own mortality and an ensuing denial of death, than it does with any genuine investment in understanding the existential condition of people said to have Alzheimer’s—in understanding ‘where they are’ in a place of living experience.” [37, 38]. Moreover, the discourses on and stigmatizing ascriptions about dementia described above prevent people without dementia from correctly internalizing the situation of people with dementia, and this discrepancy can also affect the actions of moral representatives. But people with dementia can adapt to their life situation much better than is often imagined. Especially when they have the benefit of supportive environments, people with dementia often show signs of contentment and rarely exhibit persistent or severe suffering. In the course of time, new priorities in life emerge and provide enjoyment ([7], 18). The ability to feel bonds and love, which is of elementary importance for well-being, also frequently remains present even among those who can no longer identify family members and friends by name [50, p. 27]. The understanding of what makes a life worth living can therefore differ significantly between the advocate and the person with dementia. For these reasons, as much direct communicative interaction as possible should be established between the person with dementia and that person’s advocate, thereby enabling the proper consideration of nonverbal communication and emotional expressions. Moral advocates or other supportive persons should learn to pay very close attention to the emotional expressions of people with dementia so as to accurately capture their interests, attitudes, ideas, and needs. Instead of merely making decisions on the basis of a theoretical concept of well-being, they should seek to perceive the concrete living conditions and expressions of people with dementia and determine what makes their lives better or worse [51, p. 42]. As people with dementia attempt to maintain meaningful participation, the observation of various alternative communication sources such as posture, physical orientation, touch, gaze, gestures, and facial expressions becomes increasingly important [52, p. 84]. Empirical studies have shown that the observation of these nonverbal expressions has resulted in important contributions that would otherwise have been overlooked [2, p.  17]. Paying close attention to these sometimes very subtle communicative expressions can also encourage people with dementia to express themselves through the means of communication available to them. The representation of the interests of a person with dementia can be further improved if the surrogate decision maker researches the sources of the person’s decision-making based on the consideration of their life history. Nonverbal utterances inevitably remain susceptible to misinterpretation. As dementia progresses, those affected lose more and more of their ability to develop coherent arguments and to substantiate them with facts. However, before the disease began, persons with dementia have in many cases participated in moral discourses, during which they argued in an abstract and rational manner. As discussed in Sect. 2.5, seemingly spontaneous bodily or emotional responses to various situations or questions are rooted in a personality that has been developed through countless discussions, reflections, and life experiences. Taking the life story into consideration can help to

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better recognize and decipher forms of embodied rationality and emotional memories within the expressions of people with dementia. In concrete practice, the person with dementia and a family member or caregiver can reflect jointly on earlier experiences, such as with the help of life story books [11, p. 338]. A life story book, which typically contains numerous photos and other personal mementos along with brief texts, can be effective in allowing people with dementia to share experiences and opinions. People with dementia often cannot reconstruct their life history chronologically without the use of appropriate tools, but through regular and ritualized work with their life story book, they gain confidence and can tell stories about certain topics or talk about important values (for example, about the value of solidarity as they look at a wedding photo). In this way, the wealth of experience of persons with dementia remains a potential source for providing mutual enrichment. But even when we incorporate the different forms of expression and the life stories of a person with dementia, that person is still dependent on the interpretation of the surrogate decision maker and on how he or she transfers the person’s interests into practical arrangements or advocacy decisions. Therefore, we should always attempt to have persons with dementia physically present in such negotiations so that all committee members can have direct contact with the individual concerned. This commitment leads to the concept of collaborative communication, as presented by Stacey Clifford [33] in her critical and constructive examination of Habermas’s discourse ethics. Collaborative speech is based on an understanding of the general vulnerability and mutual dependence of all humans. It recognizes that every person is dependent on others, since we all have incomplete and limited knowledge. These gaps in knowledge which every human being shares can best be reduced through direct interactions within discourses in which as many people as possible are physically present. This principle is applicable to any context in which political, legal, or philosophical issues are negotiated. Although the discussions and debates that occur at such events tend to take place at a high level of abstraction, the physical presence of people with dementia or disabilities and their nonverbal expressions can have a strong impact on the course of the discussion. Hereby, a complex network of reciprocal dependencies and enrichments emerges. To develop moral rules that are as impartial and comprehensive as possible, we need to have as many concerned discourse partners as is feasible contributing different claims from their different positions [33, p. 220]. The presence and concrete behavior of individual persons with dementia can provide claims and information about the needs or even irritations that no other people can communicate. However, one person’s capacity to contribute depends on the willingness of other discourse participants to listen. Just as in other social contexts, it is important for people with dementia who can articulate their validity claims in their own way to interact with attentive listeners. We know from many inclusion efforts that participation in new areas of society can lead to rejection and resentment toward those who do not use the commonly accepted means of expression [33, p. 224], and this rejection can be very distressing for those affected. People with dementia may therefore benefit from being accompanied by others with whom they have been in contact for

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a long time—those who are most capable of deciphering the individual’s forms of communication, but who also remain self-reflexive with regard to the danger of their own possible misinterpretations.

2.7

Conclusion

Social interaction is crucial for the development of subjectivity and knowledge, and it must be made accessible to every human being in every phase of life, including persons with all stages of dementia. Regardless of whether a person engages in discourse on the basis of rational argumentation or nonverbal utterances, he or she is always embedded in a network of interpersonal relationships and reciprocal vulnerabilities. Therefore, all members of society should consider it their task, challenge, and duty to enable the participation of all human beings. This claim is underpinned by the discourse ethics principle of universalization, which affirms that all those affected by a decision should participate in its respective discourse. However, as has been illustrated, some refinements and extensions of underlying concepts of discourse ethics are needed to properly include people with severe dementia or intellectual disability. On the level of the theoretical conception of an ideal speech situation, alternative forms of communication, such as emotional or bodily expressions and associative speech made by people with dementia, must be taken into account as ways to introduce claims into the discourse. Every person with and without dementia should be valued as an indispensable ethical dialogue partner who enriches various discourses by contributing their individual perspectives. At the same time, however, the role of reason should not be diminished, and all contributions should be rationally reviewed in joint discussions. This critical analysis of the underlying concepts of discourse ethics can undergird the development of differentiated communication settings that uphold the consideration of claims by diverse discourse participants, while at the same time avoiding a relativism that no longer permits the resolution of moral questions by means of reason. Accordingly, on the level of real discourse, participation by people with dementia should be facilitated through multilayered modes of communication. The “person competent to speak” mentioned in the rules of discourse should not be thought of in a dualistic opposition of “can speak” versus “cannot speak,” but rather along a spectrum of gradual differences in competencies that encompasses all people, with or without dementia. Depending on the degree and form of dementia, different competencies must be considered using different communicative methods and must be brought into different forms and levels of discourse. This includes discourses about one’s own concrete care as well as about general, fundamental values of society. Most importantly, the actual, physical presence of people with dementia in discourses must be arranged as often as possible, such as through collaborative communication settings. Of course, it seems difficult at first glance to enable people with severe dementia to have a voice in abstract philosophical, political, or medical discourses. However, as stated above, any doctor, politician, or philosopher dealing

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with issues related to dementia can and must seek direct communication with people with severe dementia and be open to their different ways of expressing themselves. This would do justice to what Heath [53, p. 109] calls: one of the animating ideas of the original discourse ethics project. The point in insisting upon real discourses, rather than hypothetical constructs, in order to test the validity of norms, is not to force philosophers to guess what real people would say, but rather to insist that moral questions cannot be settled by philosophers. Moral questions arise endogenously within the lifeworld, through the contestation of specific social norms, and are constantly being negotiated and renegotiated by real social actors.

In contrast, the fundamental right to participate in discourses must not be placed on a spectrum; rather, it must unconditionally include all persons with dementia. The principle of “Nothing about us, without us,” emphasized primarily with regard to the inclusion of people with disabilities, should also be taken seriously with regard to people with dementia. Instead of prematurely excluding people with dementia from a discourse, we should continue to grant them the status of dialogue partners within the discourse. Doing so not only helps to sustain the self-awareness and well-being of people with dementia but also enables all other discourse partners to continue to learn from the rich life experience of these individuals, even if their fragmentary utterances often require greater interpretation. Ultimately, the meta-ethical approach of discourse ethics can make a promising and important contribution toward strengthening the rights of persons with dementia in discourse and should remain an important reference point in ethical debates. Examining the relationship between ideal concepts and real circumstances, as well as between rationality, language, and emotional or bodily expressions, is certainly a central task for any philosopher who seeks to take seriously the right of people with dementia to participate, even if one is building on theoretical traditions other than discourse ethics. For despite the debates and differences, many critics consider discourse ethics plausible and applicable in the context of democratic politics or as a model for the critical evaluation of formal dialogues—for example, on medical ethics committees [54]. Discourse ethics has already proved to be helpful in the communicative modeling of the doctor–patient relationship and in stimulating reflection by clinical ethics committees [32, 55, 56]. Thus, refined discourse ethics can and should be an important means to further elaborate and strengthen the inclusion of persons with dementia.

References 1. United Nations Office of the High Commissioner for Human Rights. Equal participation in political and public affairs. 2019. https://www.ohchr.org/EN/Issues/Pages/EqualParticipation.aspx. 2. Nielsen E, Ekström A, Majlesi AR. Speaking for and about a spouse with dementia: a matter of inclusion or exclusion. Discourse Stud. 2018;10(6):770–91. 3. Reed P, Carson J, Gibb Z. Transcending the tragedy discourse of dementia: an ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA J Ethics. 2017;19(7):693–703.

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4. Österholm J, Samuelsson C. Orally positioning persons with dementia in assessment meetings. Aging Soc. 2015;35:367–88. 5. Alzheimer’s Disease International (ADI). World Alzheimer report 2012: overcoming the stigma of dementia. 2012. https://www.alz.co.uk/research/world-­report-­2012. 6. Read ST, Toye C, Wynaden D. Experiences and expectations of living with dementia: a qualitative study. Aust J Nurs Pract Scholarsh Res. 2017;24(5):427–32. 7. Reed P, Bluethmann S. Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town Hall Meetings for People with Early Stage Dementia. Washington DC: Alzheimer’s Association; 2008. 8. Chan PA, Chan T. The impact of discrimination against older people with dementia and its impact on student nurses’ professional socialisation. Nurse Educ Pract. 2009;9:221–7. 9. Kruse A, Schmitt E. Verantwortung für sich und andere. Identität und Generativität als psychologische Kernelemente selbst- und mitverantwortlichen Lebens. Psychotherapie im Alter. 2011;8(3):381–94. 10. Strøm BS, Šaltytė Benth J, Engedal K. Impact of the Sonas Programme on communication over a period of 24 weeks in people with moderate-to-severe dementia. Dement Geriatr Cogn Disord Extra. 2018;8:238–47. 11. van den Brandt–van Heek ME. Asking the right questions: enabling persons with dementia to speak for themselves. In: Randall WL, Bohlmejer E, Kenyon GM, editors. Storying later life: Issues, investigations, and interventions in narrative gerontology. Oxford: Oxford University Press; 2011. p. 338–53. 12. Wittgenstein L. Tractatus logico-philosophicus. Berlin: Suhrkamp; 1984. 13. Davidson D. Thought and talk (1975). In: Davidson D, editor. Inquiries into truth and interpretation. 2nd ed. Oxford: Oxford University Press; 2001. p. 155–70. 14. Robinson H. Dualism. In Zalta EN, editor. The Stanford encyclopedia of philosophy. Fall 2017 edn. 2017. https://plato.stanford.edu/archives/fall2017/entries/dualism/. 15. Prechriggl A.  Denkakte im Leibbezug. In: Soboleva M, editor. Das Denken des Denkens. Bielefeld: Transkript; 2016. p. 137–54. 16. Habermas J. The theory of communicative action: the critique of functionalist reason, vol. 2. Cambridge: Polity Press; 1981. 17. Habermas J.  Individuation through socialization: George Herbert Mead’s theory of subjectivity. In: Habermas J, editor. Postmetapysical thinking. Cambridge: Polity Press; 1995. p. 149–204. 18. Habermas J. Introduction: realism after the linguistic turn. In: Habermas J, editor. Truth and justification. Cambridge: Polity Press; 2003. p. 1–51. 19. Lafont C. Language and the linguistic turn. In: Allen A, Mendieta E, editors. The Cambridge Habermas Lexicon. Cambridge: Cambridge University Press; 2019. p. 225–9. 20. Honneth A.  Frankfurter Schule. In: Brunkhorst H, Kreide R, Lafont C, editors. Habermas Handbuch. Stuttgart: Metzler; 2015. p. 17–20. 21. Habermas J. Moral consciousness and communicative action. Cambridge: MIT Press; 1990. 22. Habermas J. The theory of communicative action 1. Reason and the rationalization of society. Cambridge: Polity Press; 1984. 23. Habermas J. Vorstudien und Ergänzungen zur Theorie des Kommunikativen Handelns. Berlin: Suhrkamp; 1995. 24. Metselaar S, Widdershoven G. Discourse ethics. In: ten Have H, editor. Encyclopedia of global bioethics. Berlin: Springer; 2016. p. 895–902. 25. Antor G, Bleidick U. Behindertenpädagogik als angewandte Ethik. Kohlhammer; 2000. 26. Speck O.  System Heilpädagogik. Eine ökologisch reflexive Grundlegung. 6th ed. Munich: Reinhardt; 2008. 27. Paret C. Der Reiz des unverhohlen Illegitimen. In Kotzur M, editor. Wenn Argumente scheitern. Aufklärung in Zeiten des Populismus. Mentis; 2018. 28. Allen A. Discourse, power, and subjectivation: the Foucault/Habermas debate reconsidered. Philos Forum. 2009;40(1):1–28.

2  Refined Discourse Ethics and the Social Inclusion of People with Dementia

37

29. Foucault M.  L’ordre du discours. Leçon inaugurale au Collège de France prononcée le 2 décembre 1970. Gallimard; 1971. 30. Hall MC.  Critical disability theory. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. Winter 2019 ed; 2019. https://plato.stanford.edu/archives/win2019/entries/ disability-­critical/. 31. Ingram D.  Habermas and Foucault. In: Gutting G, editor. The Cambridge companion to Foucault. Cambridge: Cambridge University Press; 2005. p. 240–83. 32. Kettner M.  Discourse ethics beyond Apel and Habermas: a realistic relaunch. Nordicum-­ Mediteraneum Icelandic E-J Nord Mediterranean Stud. 2011;6(1). https://nome.unak.is/ wordpress/06-­1/articles61/fv/. 33. Clifford S.  Making disability public in deliberative democracy. Contemp Polit Theory. 2012;11(2):211–28. 34. Brijnath B, Manderson L. Discipline in chaos: Foucault, dementia and ageing in India. Cult Med Psychiatry. 2008;32:215–22. 35. Wray A. Dementia and language. In: Chapelle CA, editor. The encyclopedia of applied linguistics: Wiley Online Library; 2014. p. 1–6. https://doi.org/10.1002/9781405198431.wbeal1441. 36. Müller N. Dementia. In: Damico JS, Müller N, Ball MJ, editors. The handbook of language and speech disorders. Oxford: Blackwell; 2010. p. 600–25. 37. Bartlett R, O’Connor D. Broadening the dementia debate: towards social citizenship. Bristol: Policy Press; 2010. 38. Alant E.  Ethics, dementia and severe communication problems. Humanit Soc Sci. 2016;4(2-1):37–40. 39. Mitchell GJ, Dupuis SL, Kontos PC. Dementia discourse: from imposed suffering to knowing other-wise. J Appl Hermeneutics. 2013;2013:5. 40. Walmsley B, McCormack L.  The dance of communication: retaining family membership despite severe non-speech dementia. Dementia. 2014;13(5):626–41. 41. Guendouzi J, Davis B. Dementia discourse and pragmatics. In: Davis BH, Guendouzi J, editors. Pragmatics in dementia discourse. Newcastle upon Tyne: Cambridge Scholars Publishing; 2013. p. 1–28. 42. Ferran IV. Epistemische Gefühle und epistemische Werte. In: Soboleva M, editor. Das Denken des Denkens. Bielefeld: Transkript; 2016. p. 113–35. 43. Demmerling C. Sprache, Denken, Praktische Begriffe. In: Soboleva M, editor. Das Denken des Denkens. Bielefeld: Transkript; 2016. p. 39–60. 44. Walmsey B, McCormack L. Severe dementia: relational social engagement (RSE) during family visits. Aging Ment Health. 2017;21(12):1262–71. 45. Kontos PC.  Embodied selfhood in Alzheimer’s disease: rethinking person-centred care. Dementia. 2005;4(4):553–70. 46. Thompson PM.  Communicating with dementia patients on hospice. Am J Alzheimers Dis. 2002;17(5):299–302. 47. Brumlik M. Über die Ansprüche Ungeborener und Unmündiger. Wie advokatorisch ist die diskursive Ethik? In: Kuhlmann W, editor. Moralität und Sittlichkeit. Berlin: Suhrkamp; 1986. p. 265–99. 48. Brumlik M. Advokatorische Ethik. Berlin: Philo-Verlag; 2004. 49. Jox RJ, Denke E, Hamann J, Mendel R, Förstl H, Borasio GD. Surrogate decision making for patients with end-stage dementia. Int J Geriatr Psychiatry. 2012;27(10):1045–52. 50. Tunney RJ, Ziegler FV. Toward a psychology of surrogate decision making. Perspect Psychol Sci. 2015;10(6):880–5. 51. Dresser R. Advance directives and discrimination against people with dementia. Hastings Cent Rep. 2018;48(4):26–7. 52. Schermer M.  In search of “the good life” for demented elderly. Med Health Care Philos. 2003;6(1):35–44. 53. Davis B, Maclagan M, Cook J. “Aw, so, how’s your day going?” Ways that persons with dementia keep their conversational partner involved. In: Davis BH, Guendouzi Q, editors.

38

P. Frantik

Pragmatics in dementia discourse. Newcastle upon Tyne: Cambridge Scholars Publishing; 2013. p. 83–116. 54. Heath J. Discourse ethics. In: Allen A, Mendieta E, editors. The Cambridge Habermas lexicon. Cambridge: Cambridge University Press; 2019. p. 104–9. 55. Bohman J, Rehg W.  Jürgen Habermas. In: Zalta EN, editor. The Stanford encyclopedia of philosophy. Fall 2017 edn; 2017. https://plato.stanford.edu/entries/habermas/. 56. Kettner M. Discourse ethics. Apel, Habermas, and beyond. In: Rehmann-Sutter C, Düwell M, Mieth D, editors. Bioethics in cultural contexts. Berlin: Springer; 2006. p. 299–318. 57. Kettner M.  Discourse ethics and health care ethics committees. Annu Rev Law Ethics. 2006;4:249–72.

3

Do You Remember Who You Are? The Pillars of Identity in Dementia Nada Gligorov and Christopher Langston

Contents 3.1  Introduction 3.2  Narrative Identity and the Concept of Self 3.3  Types of Dementia 3.4  Elements of a Self-Concept 3.5  Changes in Preference and Changes in Self-Concept References

 40  41  44  46  50  53

Abstract

Loss of personal identity in dementia can raise a number of ethical considerations, including the applicability of advance directives and the validity of patient preferences that seem incongruous with a previous history of values. In this chapter, we first endorse the self-concept view as the most appropriate approach to personal continuity in healthcare. We briefly describe two different types of dementia, Alzheimer’s dementia (AD) and behavioral-variant frontotemporal dementia (bv-FTD). We identify elements considered important for the continuation of a self-concept, including continuation of memories, consistency in personality traits and personal preferences, and continued endorsement of certain moral tenets. We show that, depending on which element is considered most important for personal identity, continuity of a self-concept for individuals with distinct types of dementia will be affected and assessed differently. Utilizing

N. Gligorov (*) Icahn School of Medicine at Mount Sinai, New York, NY, USA e-mail: [email protected] C. Langston Department of Neurology, The Mount Sinai Hospital, New York, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_3

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a variety of empirical evidence, we argue that persistence of memory, personality traits, and preferences are not the most important for the maintenance of personal identity. Instead, as studies aimed to capture the folk-psychological view of personal continuity demonstrate, judgements about continuity depend primarily on the persistent commitment to widely shared moral beliefs. Because of that, we argue that individuals with bv-FTD are more likely to lose their sense of self than individuals whose dementia primarily affects memory, such as Alzheimer’s disease. We end the chapter by showing how the importance of moral beliefs for continuity of self can be used to provide guidance to healthcare professionals when considering changes in preference by individuals with dementia.

3.1

Introduction

Psychological changes caused by dementia can raise a number of ethical questions, including the applicability of advance directives and the validity of patient preferences that seem incongruous with a previous history of values. To settle some of those quandaries, it is important to identify a conception of personal identity relevant to healthcare and clinical decision-making. There are distinct ways of characterizing personal identity. Traditionally, in the philosophical literature, the focus has been on establishing a diachronic numerical criterion of personal identity to establish necessary and sufficient conditions for maintenance of personal identity over time despite either physical or psychological changes. More recently, the focus in the bioethics literature has been on narrative identity, the view that each person’s narrative establishes their personal identity over time. A narrative establishes personal identity through  a coherent, linear story that incorporates a person’s past and present actions and choices. Furthermore, a narrative maintains identity by motivating decisions and actions in the future that are congruent with the biographical story. In this chapter, we first propose the self-concept view of personal continuity over time.1 In Sect. 3.2 of the chapter, we describe the self-concept view and show that we accept some aspects of the narrative identity approach but reject the requirement that personal continuity over time requires maintenance of identity. We argue that the self-concept view most closely resembles the folk-psychological characterizations of personal identity and is the most pertinent to dementia-related loss of self. In Sect. 3.3, we briefly describe two different types of dementia, Alzheimer’s dementia (AD) and behavioral-variant frontotemporal dementia (bv-FTD). In Sect. 3.4 of the chapter, we tackle the relative importance of the maintenance of particular psychological features for the preservation of a self-concept after the onset of 1  Throughout the chapter we use the term self-concept and concept of self interchangeably to designate the view formulated in the second section of the chapter.

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dementia; these features include the maintenance of memories, consistency in personality traits and personal preferences across time, and persistent endorsement of certain moral tenets. We argue that because distinct types of dementia cause different psychological changes, concepts of self might be affected differently depending on which psychological element is identified as primary for personal identity over time. Utilizing a variety of empirical evidence, we argue that persistence of memory, personality traits, or preferences are not the most important for the maintenance of a self-concept [1, 2]. Instead, both judgments about personal continuity, made either by an individual for themselves or by an individual for others, depend primarily on the continued commitment to widely shared moral beliefs [3]. Individuals with bv-FTD are, on this view, are more likely to lose their concept of self because their impairments lead to changes in moral beliefs. We end the chapter by showing how the importance of moral beliefs for personal identity can be used to provide guidance to health-care professionals when considering changes in preference by individuals with dementia.

3.2

Narrative Identity and the Concept of Self

There are two categories of numerical criteria for identity over time. Both aim to establish when an individual remains one and the same over time despite, sometimes, even significant physical or psychological changes. To do that, these criteria identify particular features of the individual that endure over time and that can be used to establish necessary and sufficient conditions for maintenance of identity over time. These two kinds of criteria identify either biological or psychological features as primary for maintenance of identity. Biological criteria establish identity between the various stages of a person by identifying physical features that persist over time. For example, DeGrazia [4] argues that biological identity over time is the persistence of the same biological animal. Biological criteria, however, because of their focus on the maintenance of physical or biological features, do not capture the importance of the continuation of psychological features. In effect, because biological criteria prioritize biological features of the individual, they do not qualify as personal identity criteria. Psychological criteria for personal identity prioratize personhood. They identify persons with a certain set of psychological features and equate personal identity over time with the continuation of those features across distinct stages of an individual’s life. Both biological and psychological numerical criteria are  third-person criteria of identity over time: First, because they do not rely on individual perspectives to establish personal identity, i.e., they do not take into account whether the characteristics selected as necessary and sufficient for the continuation of identity are actually important for maintenance of identity to individual people. For example, there are criteria of personal identity over time that require having a certain set of core memories [5] for the maintenance of personal identity over time. But the selection of memory as the feature required for maintenance of identity is not based on the

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perceived importance of memory to individual people for the continuation of their identity. Second, third-person criteria aim to identify objective features that could be used to determine whether an individual is one and the same over time without relying on the particular individual’s subjective sense of continuity. In principle, a third-person criterion could be used to establish that an individual is one and the same even in situations when the individual in question is experiencing a feeling of discontinuity. For example, an individual can continue to be the same biological animal while undergoing significant psychological change, e.g., a painfully shy person becoming an extrovert. Similarly, an individual could experience a feeling of continuity despite significant psychological changes that might challenge some accounts of psychological identity through time; for example, an individual may change a party affiliation or stop being religious and still feel that these changes have not disrupted identity. The focus on the third person when establishing personal identity criteria has been criticized. For example, Schechtman [6] argues that third-person criteria fail to capture crucial practical aspects of personal identity. To accommodate for this failing, Schechtman [6] develops what she calls the self-constitution view, where personal identity over time is based on the ability of an individual to maintain a coherent and linear narrative. Unlike numerical criteria for personal identity, Schechtman’s self-constitution view aims to establish a relationship between the person and a particular trait, action, thought, or experience. Based on this account, the question becomes that of characterization, i.e., the degree to which a trait or an action could be said to characterize a particular person. A personal narrative should capture those traits and actions that characterize the person and capture the individual’s core self. According to Schechtman, the self-characterization view captures our usual notion of identity, one that is important when we wish to attribute praise or blame or explain why maintenance of identity is important. In addition, the self-­ characterization view concerns the sense of identity at issue when an individual is said to be undergoing an identity crisis [6, p. 74]. Schechtman’s view is that as long as one’s narrative maintains linearity, coherence, and accuracy, the person’s numerical identity over time is maintained. This view has been adopted by DeGrazia [4] and applied by him to a number of debates in bioethics. Given that our aim in this chapter is to address practical applications of personal identity as they might arise for patients and caregivers, we endorse a first-­ person account of personal continuity. We call this the self-concept view. We opt to endorse the self-concept view, not narrative identity, to avoid the charge that identity requires specific linguistic abilities, which might exclude individuals who have limited verbal abilities, and because we reject the view that identity over time is required for the maintenance of a self-concept. Based on our view, a self-concept depends on each individual’s selection of core values, beliefs, personal interests, and characteristics. A list of traits or characteristics true of an individual is not in itself a self-concept; rather, a person develops a concept of self by incorporating only some traits she finds most important, or as Schechtman says, traits that are most self-constitutive. Because one’s self-concept is not a mere list of traits, but a selection of only some physical or psychological attributes, an individual can

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change over time and even appear to others as having changed a great deal without losing their sense of continuity as long as there is maintenance of certain core traits over time. This view accommodates some of the evidence presented in Sect. 3.4 of this chapter, where individuals with certain kinds of dementia are able to maintain a certain sense of continuity despite significant psychological changes. There are individual differences in concepts of self. The traits a person finds most significant for her concept of self might not overlap with what are sometimes considered core aspects of every individual. For example, characteristics that are often considered important for identity include national origin, religion, or belonging to a particular profession. But some individuals might form a self-concept without relying on any of those traits. The importance ascribed to features of the self is entirely individual. A person might choose her favorite characteristics and establish a hierarchy between them in any way she pleases. Such personal concepts do not establish a more generally applicable criterion for personal identity, and one person’s self-concept should not be used to adjudicate the adequacy of other people’s self-concepts. In other words, self-concepts are not normative. In principle, we do not set adequacy criteria for concepts of self although we countenance that there might be characteristics that would be required in order for an individual to be said to have an adequate self-concept. In Sect. 3.4 of this chapter, we show that there are certain types of psychological traits that are more important for the maintenance of a self-concept. For example, the evidence we describe demonstrates that continued endorsement of widely shared moral beliefs, such as the belief that murder is wrong, is important for the maintenance of conceptions of self. Unlike Schechtman’s attempt to use narrative identity also as a way of establishing that a person remains one and the same over time, we abandon the project of establishing a numerical criterion of identity, but we also endorse a distinct third-­ person criterion for continuity over time. Our position on numerical identity is in line with the view endorsed by Gligorov and Vitrano [7].We maintain that continuity of self requires similarity over time, but not identity. We argue that the relationship between different stages of an individual’s life, for example, the individual at age 25, 55, and 95, is one of similarity. The person at each of those distinct moments might not maintain diachronic identity; instead, we argue that as long as the person remains sufficiently similar across time, continuity is maintained. In other words, our view is that continuity requires similarity across time, not identity. Because similarity, unlike identity, is not a transitive relationship, it can be maintained even when the individual is at distinct stages, e.g., the individual at age 25 and at age 95, is significantly different. Our view of similarity over time is modeled on Parfit’s [8] relationship R, which is a measure of psychological connectedness across different stages of an individual’s life. Psychological connectedness is achieved when the different stages of a person’s life are connected by chains holding between past experiences and memories of the experiences, and between her intentions and the acts in which those intentions are carried out. Psychological connections are also present when a person continues to hold beliefs, desires, and ideals, and she maintains a particular character or approach to life. As long as similarity is maintained by the interim stages, say the individual at 55 is sufficiently similar to the individual at

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65, and so on, then the relationship of similarity is preserved over time. We take this view to satisfy the demands of both first-and third-person criteria. From the firstperson perspective, it is likely that an individual sense of continuity closely trails the psychological connectedness among the different iterations of their self-­concept. Although an individual’s self-concept might change over time, their ability to maintain a unified self-concept will likely trail the psychological connectedness between the distinct versions of the concept. From the third-person perspective, one can use the criterion of similarity to adjudicate whether an individual remains sufficiently similar over time. For example, the similarity criterion could be used in situations where a physician needs to determine whether the self that wrote an advance directive or expressed a wish for a certain kind of medical care is sufficiently similar to the individual to whom the directive is being applied. This use of the similarity criterion will be discussed further in Sect. 3.5 of the chapter.

3.3

Types of Dementia

According to the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-5), dementia is a major decline in at least one of the following cognitive domains: (i) complex attention; (ii) executive functioning; (iii) learning and memory; (iv) language; (v) visual spatial function; (vi) or social cognition [9]. What distinguishes major decline from minor decline is that it interferes with independence in everyday activities. In general, dementia has an insidious onset and gradual, progressive worsening—sometimes dementia can be reversed by treating its cause, but in most cases, it is irreversible. Because dementia involves interference with independence due to new cognitive limitations, it almost always implies some reduced capacity to make complex decisions, including medical decisions. There are various ways of distinguishing types of dementia. For our purposes, we can distinguish amnestic dementias, in which loss of memory (domain (iii)) is the most conspicuous deficit, from social dementias, in which deficits in social cognition (domain (vi)) are most conspicuous, and in which episodic memory, semantic memory, and visuospatial skills are relatively spared. Alzheimer’s disease (AD) is the prototypical and most common amnestic dementia, a category that also includes Korsakoff syndrome and some postsurgical dementias, like that of the famous patient H.M., who developed complete anterograde amnesia after surgery for intractable epilepsy. Behavioral-variant frontotemporal dementia (bv-FTD) is the prototypical and most common social dementia, a category that also includes Kluver–Bucy syndrome and post-traumatic dementias like that of Phineas Gage, who manifested severe personality changes and social improprieties after highly localized brain trauma. Because the prototypes (AD and bv-FTD) are the most well-­described compared to other types, we will focus on these specifically.

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The earliest and most conspicuous deficit in Alzheimer’s disease is impairment of episodic memory, though visuospatial skills and semantic memory are also affected to a lesser degree. Initially, there is difficulty encoding new memories, while there is preservation of immediate recall (e.g., rehearsing a phone number), procedural memory (e.g., knowing how to do long division), and recollection of remote facts (e.g., childhood events). As the disease progresses, the episodic memory deficits worsen to the point that patients struggle to recall core personal events and relationships. Personality changes occur throughout the disease course and are characterized by apathy, neuroticism, and decreased conscientiousness and insight. In contrast to Alzheimer’s, the earliest and most conspicuous dysfunction in bv-FTD is impairment in social interactions due to personality changes, with relative preservation of memory. The criteria for bv-FTD require that three out of the following six symptoms be persistent or recurrent: (1) behavioral disinhibition (socially inappropriate behaviors, loss of manners or decorum, impulsiveness, or carelessness); (2) apathy or inertia; (3) loss of sympathy or empathy (diminished response to other people’s needs or feelings, or diminished social interest or personal warmth); (4) stereotyped, compulsive, or ritualistic behavior; (5) hyperorality and dietary changes; (6) executive deficits with sparing of memory and visuospatial skills [10]. Typically, patients have very little insight into the changes in their personality. Personality changes rise to attention when the patient becomes apathetic or even antipathetic about prior interests and relationships and becomes preoccupied with new, strange interests, such as unusual dietary fads or oral fixations (e.g., chewing gum all day), compulsive behaviors (e.g., repeatedly vacuuming the house), or uncharacteristic enthusiasms (e.g., an obsession with painting); it is not uncommon for patients in the early stages of the disease to develop the “facilitation” of creativity that inspires zeal for artistic expression. Family members may not realize that these personality changes are pathological until the patient becomes excessively disorganized, aggressively hostile without provocation, or embarrassingly disinhibited. There is some overlap in the clinical features of AD and bv-FTD, but the differences are more striking than the similarities. Both conditions involve personality changes, including apathy and lack of insight, and both involve some degree of memory impairment and executive dysfunction. However, bv-FTD is characterized by startling personality changes with relative preservation of memory; the personality changes involve core features of the self, including revised political and religious tenets, dramatically shifting dietary preferences, altered daily habits and routines, and decline in general degree of care and affection expressed toward family, friends, and acquaintances. The symptoms of AD are almost the reverse: progressive episodic memory loss with relatively minor personality changes of executive dysfunction (which revolve around neuroticism and decreased conscientiousness), rather than relationships to others and to distinctive features of personality. In general, the lack of insight into the dementia that is shown by individuals with advanced bv-FTD is more severe than in advanced Alzheimer’s, especially with respect to personality changes.

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Elements of a Self-Concept

As was described in Sect. 3.2, possession of a self-concept requires an individual to identify certain personality traits, preferences, moral values, and past actions as most important for personal  continuity. As we stated in that section, we do not establish any a priori requirements for an adequate self-concept. And because our view relies on first-person rankings of traits most important for the formation and maintenance of a concept of self, an empirical approach can be used to identify which psychological features are most important to people when it comes to the maintenance of self-concepts over time. Although these data should not be seen as providing a normative ideal for what is required for a good self-concept, they can be used to make predictions about which traits might be most important to individual people to maintain their self-concept. The deficits associated with AD and social dementias like bv-FTD can serve as test cases to help identify whether any particular psychological ability is most important for the maintenance of the self-concept. Amnestic dementias like AD can help determine the importance of memories as the primary pillar of continuity, while bvFTD is a test case for the significance of changes in preferences, values, and behavior. In what follows, we will describe a number of studies that identify the relative importance of certain psychological abilities for the maintenance of a self-concept. The methodology they use is heterodox, and many of the studies shift between investigating identity over time and a sense of self. Nonetheless, most of the studies rely on what can be characterized as a first-person characterization of a concept of self, i.e., they ask either patients with dementia or healthy individuals to identify features most important for the maintenance of self. For example, they utilize tests that prompt individuals to describe their self-concept or they provide participants with scenarios of imagined changes to gauge to what extent such changes would affect their own view of personal continuity. We do not interpret these data as providing guidance as to the most adequate numerical criterion of identity as described in Sect. 3.2. As mentioned in Sect. 3.2, some views on third-person identity over time identify memory as important for continuity. This view has initial plausibility even when one adopts a self-concept view of personal continuity, as it would stand to reason that all memory, but in particular, autobiographical and episodic memories would be a source of self-knowledge that would help ground one’s concept of self.2 There are, however, several studies that undermine the importance of even episodic memories, for the maintenance of self in individuals with Alzheimer’s disease. Eustache et  al. [11] assessed the concept of self in patients with advanced Alzheimer’s by using the I-AM test which requires spontaneous self-definition by finishing sentences of the form “I am…” with a self-description. They also utilized the IMAGE test, which requires rating of self-descriptive statements, such as “I’m an honest 2  Episodic memories are memories of everyday events that are associated with a particular time or location, such as the memory of a witnessed car accident. Autobiographical memories are a subset of episodic memories that are of episodes of an individual’s life, such as the memory of one’s first kiss.

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person” or “I tell lies far too often.” They compared the performance of individuals with AD to those of healthy elderly controls. The study showed that even individuals with advanced AD had a persistent sense of self: individuals were retested 2 weeks after the initial test, and the results of the tests remained the same, indicating that their sense of self remained steady over 2 weeks. The most notable difference between the two populations in the study, those with AD and normal adults of similar age, was that patient’s with AD, in mild-to-severe stages of the disease, on average estimated their chronological age at 14 years younger than they actually were. The maintenance of sense of self despite disease was credited to the maintenance of declarative memories,3 while the inability to estimate their age correctly was thought to be due to their deficits in episodic memory, which prevented them from updating their sense of self. Another study by Addis and Tippett [12] investigated the connection between concepts of self in individuals with AD and their autobiographical memory. Utilizing the Twenty Statement Test, Addis and Tippett discovered that patients with AD in the mild-to-moderate stages had what was characterized as a “weaker sense of identity”; their answers to questions were more abstract and vaguer than those of healthy elderly individuals. The components of identity as identified by the Twenty Statement Test, however, were preserved in individuals with AD.  Moreover, the deficits in memory identified through the Autobiographical Memory Interview only very weakly correlated with their performance on the identity measures, showing that deficits in autobiographical memory do not seem to have a very significant impact on maintenance of a concept of self in patients with AD. Another initially plausible view would have it that maintenance of particular personality traits is required for maintenance of self-concept over time. Changes in personality traits, for example, a shy person becoming more social, might precipitate a discontinuity in a self-concept. The importance of maintaining core personality traits has been cited as the reason against the use of pharmacological and other medical means of personality modification [13, 14]. A number of recent studies designed to identify the essential aspects of the folk-psychological conception of self demonstrated that persistence of particular personality traits was not considered most important for continuity. In a series of studies, Strohminger and Nichols [2] investigated which changes to an individual’s psychology would be judged as having the greatest impact on personal identity and concluded that changes in morality had the greatest impact on judgments of personal continuity. Changes in personality traits, such as shyness or absentmindedness, were considered second most important after changes in morality. One of the scenarios asked participants to imagine meeting an old friend and then to imagine that they had changed in some way. The changes that were judged the least significant for continuation of identity included changes in desires. It is important to note that changes in desires and preferences included changes in sexual orientation, which makes it even more surprising that the category was not considered more important given that sexual orientation is often considered crucial for conceptions of self.  Declarative memories are memories of facts, such as knowing the name of the capital of France.

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Strohminger and Nichols [2] also investigated more targeted changes, such as asking participants to imagine a person taking a pill that could change a more specific aspect of themselves. This approach revealed that changes in morality, including changes in moral behavior (e.g., lying or cheating) and moral traits (e.g., being compassionate or generous), were considered the most determinative of discontinuity in personal identity. In a study further investigating the importance of moral tenets on the continuation of identity, Heiphetz et  al. [1] identified which moral tenets were judged the most important to preserve identity. They investigated the impact of both rejections of widely held moral beliefs—that murder and pedophilia are wrong, for instance—as well as the significance of switching sides on controversial moral beliefs, such as believing, against earlier convictions, that abortion is morally wrong or that euthanasia is permissible. In this study, they investigated both first- and third-person judgments of importance for continuation of identity. In other words, they asked people to imagine a change in moral beliefs for themselves and for somebody else and then asked them to judge the significance for their identity and for the identity of some other person. In both instances, participants judged that changes in widely held moral beliefs were the most significant for the maintenance of personal identity when the participants were making judgments for themselves and when they were judging for other people. A possible explanation for why continued commitment to widely held moral beliefs is judged to be so crucial for the maintenance of personal identity is captured by the community hypothesis [1], which is the view that sharing beliefs is important for membership in a particular community. Endorsement of widely shared moral beliefs allows people to participate in and belong to a community, and losing communally shared beliefs could challenge continued membership in that community. Moreover, membership in a particular community, such as being a member of a particular religious group, might be constitutive of an individual’s concept of self [15]. Thus, being excluded from the relevant community might challenge self-concepts. There is evidence that communal membership and identity is important to individuals with dementia. Cohen-Mansfield et  al. [16] sought to determine to what extent role identities are preserved after dementia onset. The categories of roles investigated by the survey included occupational roles, e.g., a person’s role as a nurse or a teacher; family roles, e.g., one’s role as a parent or a sibling; and leisure activities, e.g., an individual’s role as a tennis fan or book club member. The questionnaire asked participants to rate their role identities and compare how important these roles were to them in the past and how important they were to them at the time of the survey. The responses indicated that role identities had changed in importance over time. For example, individuals with dementia considered occupational role identity the least important, while their family role identity remained important. This study provides some indication that belonging to a family and maintenance of one’s role in the family remain a sources of an individual’s concept of self even after the onset of dementia.

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If the community hypothesis is correct and it helps explain the prioritization of widely held moral beliefs for the persistence of a self-concept, then it would be particularly interesting to determine whether preferences not explicitly moral but required for membership in a community or religious group would be prioritized for individuals from those communities. For example, if the commitment to a particular dietary regimen is required for belonging in a particular religious group, then changes in dietary preferences might be considered as important as changes in widely held moral beliefs because they are crucial to being part of a specific community. Similarly, changes in memory, personality, and preferences might become more important if they are crucial to maintain role- or group-identity in specific communities. Most studies investigating the folk concept of identity found that changes in physical abilities, including perceptual and cognitive abilities, were judged to have little impact on continuation of identity. However, if physical skills were central to an individual’s belonging to a community, say being a ballet dancer or rock climber, perhaps loss of those abilities would be more consequential to those individuals as it might prevent them from continuing to be part of their communities. In other words, the judged importance of an individual’s psychological or physical features would depend on those features’ relevance for membership in a specific community. Given what we already know about the relative importance of moral beliefs to self-concepts, one would expect that changes in morals or changes in moral behavior might be the most determinant of the caregiver’s assessment of identity change in individuals with dementia. Strohminger and Nichols [3] surveyed caregivers or family members of individuals with AD, bv-FTD, and amyotrophic lateral sclerosis (ALS) to determine to what extent psychological and physical changes caused by neurological disease had affected personal identity. The study demonstrated that although the daily functioning of individuals with ALS was the most affected, caregivers of individuals with ALS were the least inclined to judge them as having changed. Individuals with AD were judged to have the least change in daily functioning (although this might depend on the severity of the disease), yet they were more likely to be perceived by their loved ones as having changed and even as having become “like a stranger.” Individuals with FTD were the most likely to be seen by their caregivers as having changed or as having become like a stranger. These findings support the view that widely held moral beliefs are the most significant for the maintenance of personal continuity. As individuals with bv-FTD are more likely to exhibit morally, and sometimes even legally, prohibited behavior such as stealing, pedophilia, or even murder [17], it is to be expected that their relatives would experience those changes as very significant for identity. It is of note that, as was described in Sect. 3.3 of the chapter, individuals with bv-FTD lose insight into their disease and become unable to notice changes in their personalities and eccentricities in their behavior. Several studies note the discrepancy between the patient’s and caregiver’s judgments about continuity of self when it comes to individuals with bvFTD [17, 18]. In the following section, we will assess how the deficits experienced by individuals with distinct types dementia affect self-concepts.

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Changes in Preference and Changes in Self-Concept

To highlight the importance of personality changes in dementia to clinical ethics, we will now gauge how knowing more about the relative importance of the elements of a self-concept can help with decision-making when patients with dementia begin expressing preferences that are incongruous with their previous wishes. In addition to quandaries about advance directives, which apply strictly to medical preferences, an ethical dilemma that arises in taking care of patients with dementia is whether to respect changes in preferences when they are incongruous with the individual’s prior wishes or values. As was described in Sect. 3.3, bv-FTD can often result in changes in dietary preferences and the development of new interests or compulsions. Similarly, individuals with AD could simply forget their prior commitments to certain dietary restrictions or other long-term commitments, which could result in changed preferences. An example often invoked is of an individual who, after developing dementia, has started expressing preferences incompatible with their previously held religious beliefs. For example, a rabbi might wish to start eating shellfish or some other non-kosher food. If the rabbi is in a nursing home, the question becomes whether the rabbi’s caregivers should respect his or her wishes and let the patient eat non-kosher food. Intuitively it would seem that it is wrong to allow the rabbi to eat shellfish, even if the patient consistently expresses that preference. Intuitions usually switch if the change in preference is perceived as innocuous, such as the rabbi wants to eat sweets even if earlier in his life he never enjoyed eating dessert. There are variety of reasons why one might make a distinction between eating dessert and eating shellfish in this particular context. One could make the argument that the patient is no longer making authentic choices or, more precisely, choices congruous with their earlier concept of self. Or one could appeal to capacity and argue that the patient no longer has the capacity to make decisions about dietary practices. Both of these ways of responding to the problem would require that both preferences be either rejected or accepted. If one argues that the patient’s preferences are somehow inauthentic because of a large change in the patient’s self-concept, then all changed preferences should be rejected, whether it is to eat shellfish or to eat sweets. Similarly, if a patient is deemed to lack capacity to make their own decisions, then any new preferences should be rejected because they are not the result of an autonomous decision. These approaches do not offer a way of accommodating the intuition that there is a difference between preferences. The research on the importance of moral beliefs for the continuity of self-concept offers a way of differentiating between the preference that contravenes one’s religious commitments and the one that merely indicates a departure from a previously established habit. As previously described, research by Heiphetz et al. [1] indicates that the maintenance of identity depends greatly on the maintenance of beliefs that make it possible for an individual to continue being part of the community. Moreover, the study on role identity by Cohen-Mansfield, Golander, and Arnheim [16] showed that family-­ role identity tends to remain preserved even after individuals with dementia forget or deprioritize all their other role identities. Hence, insofar as maintenance of a

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concept of self through role identity can improve or promote the well-being of individuals with dementia, decisions about respecting patient preferences and desires should in part consider how respecting those preferences might affect the patient’s role identity as well as their communal identity. Allowing a rabbi to eat non-kosher food could disrupt both his family relationships and his continued acceptance within the religious community. Eating cake would not have such an effect. Thus, one could distinguish between the new desire to eat non-kosher food and the increasing desire to eat dessert by appealing to the importance of each of those desires with respect to the maintenance of a self-concept. There are a couple of reasons why working to preserve a conception of self might be important. First, personal discontinuity due to the loss of a self-concept might diminish quality of life. Second, individuals with dementia become increasingly dependent on their family for both daily living and for emotional care. Maintenance of a self-concept might make it easier for the family to continue caring for the patient, which in turn promotes the patient’s quality of life. As we described earlier, patients with bv-FTD experience significant changes, such as behavioral disinhibition that results in socially inappropriate behaviors and loss of sympathy and empathy. These changes can diminish these individuals’ abilities to act in accordance with commonly accepted moral norms. Indeed, some patients with bv-FTD engage in behavior both illegal and immoral actions, including pedophilia, public masturbation, physical assault, hit and runs, and theft [17]. It is clear that behavior that is both harmful to others and legally prohibited cannot be condoned by those caring for individuals with bv-FTD. Decisions become harder when the behavior is not criminal, but might be considered by some as problematic, such as addiction to pornography. Even if this habit might not cause physical harm to others, it could disrupt family relations. If one takes seriously the view that continuity of a self-concept depends on the maintenance of certain basic moral beliefs that are required for the maintenance of community relations, then in some situations it might be advisable to curb behavior that disrupts the patient’s family relations for the sake of maintaining their self-concept. However, one must always seek a balance between limiting an individual’s choice and promoting continuity of self because even for patients who lack decisional capacity and cannot take responsibility for their actions, restrictions of liberty can decrease quality of life. There is a developed literature in bioethics on the relevance of personal identity to advance directives [19–22]. Within this literature, commentators focus on whether changes in identity could invalidate advance directives. For example, if a person with an advance directive were to change so significantly that they could be judged to be a different person, it might be the case that an advance directive no longer applies. Much of the debate about the validity of advance directives in this context either assumes a kind of numerical criterion of identity where sufficient personality changes result in a discontinuity of identity, such that an individual before and after dementia would be two different people. As we argued in Sect. 3.2 of the chapter, we reject criteria for numerical identity and adopt the criterion of similarity. We maintain that caregivers could decide when advance directives apply based on the degree of similarity between the individual who wrote the directive and the patient

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who now might be subject to this directive. If an individual after dementia is still sufficiently similar to the individual who formulated the directive, then the directive might apply. If, however, the individual is sufficiently dissimilar, the advance directive might no longer be applicable. It is important to note, however, that in many situations, adjudicating degrees of similarity, as per our view, or identity would not be required in order to determine whether a directive still applies to the patient with dementia. There are two central questions with regard to the applicability of advance directives, and each one of them can be resolved in distinct ways. The first question is whether an individual with dementia ought to be allowed to revoke or change their advance directive. The answer to this question does not require a solution to whether an individual before or after the onset of dementia symptoms is the same person. This is in part because of the restricted ways in which patients can currently formulate advance directives. Some of the most common advance directives are proxy designations where an individual identifies somebody they know to make decisions for them when they lose capacity because of illness. Another type of advance directive is a Do Not Resuscitate (DNR) order and a Do Not Intubate (DNI) order, which obligates physicians to refrain from implementing these life-sustaining measures, including for patients who no longer have decision-making capacity. Some states in the United States also have Medical Orders for Life-Sustaining Treatment (MOLST), which provide patients with the ability to give specific guidance to physicians about resuscitation, intubation, and the use of antibiotics. In order for the patient to revoke an advance directive, they must have decisional capacity. As was discussed in Sect. 3.3 of the chapter, a diagnosis of dementia causes cognitive impairments that impede independence, which implies that dementia usually diminishes an individual’s capacity to make some medical decisions. As dementia progresses, patients will ultimately become unable to make all medical decisions. This means that an individual with dementia will eventually not be able to revoke an advance directive simply because she is no longer judged competent to make medical decisions for herself or for anybody else. This makes the question of identity irrelevant. The second question pertaining to the applicability of advance directives to individuals with dementia is whether an individual taking care of a patient with dementia ought to respect the prior-instituted advance directive. Here, the questions of identity may become relevant. Buchanan and Brock [19] provide a solution that might help in making decisions for individuals at the very end stages of dementia. They argue that in most situations where advance directives become relevant for medical decision-making, patients have usually lost most of their psychological functioning such that they are no longer persons at all. These would be situations where one would make decisions for individuals at the very end of life who have lost all of their psychological functioning. In this case, one could revert to DeGrazia’s biological criterion and argue that the advance directive still applies because the patient is still the same biologically defined creature. We think that employing a biological identity criterion is an adequate answer in most cases where individuals are at the very end stages of dementia. It is important that individuals at the very end stages

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of dementia lose even the most basic elements of psychological function required for maintaining consciousness or interacting with their environment. In such cases, it would not be controversial to say that an individual with dementia no longer has a concept of self and is no longer a person. Biological criteria of identity are not criteria of personal identity because they do not rely on the maintenance of psychological function to fix identity over time and can be used to determine whether an individual is the same biological animal over time. In earlier stages of dementia where individuals with dementia are still able to maintain a self-concept, we take the view that the criterion of psychological similarity and continuity provides the right answer, which is that in cases where the individual with dementia is sufficiently similar to the person before the onset of dementia symptoms, advance directives should apply. To determine similarity and to promote maintenance of a self-concept, caregivers could utilize evidence about the importance of moral beliefs to self-identity, using changes in moral commitments as one of the indicators of discontinuity of self-identity. We would venture a guess that situations in which individuals would still be considered persons, based on Buchanan and Brock’s criteria, but could be judged to be sufficiently dissimilar because they have stopped endorsing communally endorsed moral beliefs, would most likely arise for patients with bv-FTD.  In situations such as these, advance directives might no longer apply and decisions about whether to implement the advance directives should be made based on judgments about quality of life rather than judgements about maintenance of a self-concept.

References 1. Heiphetz L, Strohminger N, Young LL. The role of moral beliefs, memories, and preferences in representations of identity. Cogn Sci. 2017;41(3):744–67. 2. Strohminger N, Nichols S. The essential moral self. Cognition. 2014;131(1):159–71. https:// doi.org/10.1016/j.cognition.2013.12.005. 3. Strohminger N, Nichols S. Neurodegeneration and identity. Psychol Sci. 2015;26(9):1469–79. 4. DeGrazia D. Human identity and bioethics. Cambridge: Cambridge University Press; 2005. 5. Perry J. A dialogue on personal identity and immortality. Indianapolis: Hackett Publishing; 1978. 6. Schechtman M. The constitution of selves. Ithaca: Cornell University Press; 1996. 7. Gligorov N, Vitrano C. The impact of personal identity on advance directives. J Value Inq. 2011;45(2):147. 8. Parfit D. Reasons and persons. Oxford: Oxford University Press; 1984. 9. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM-5®). Washington, DC: American Psychiatric Publication; 2013. 10. Rascovsky K, Hodges JR, Knopman D, Mendez MF, Kramer JH, Neuhaus J, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain. 2011;134(9):2456–77. 11. Eustache ML, Laisney M, Juskenaite A, Letortu O, Platel H, Eustache F, Desgranges B.  Sense of identity in advanced Alzheimer’s dementia: a cognitive dissociation between sameness and selfhood? Conscious Cogn. 2013;22(4):1456–67. https://doi.org/10.1016/j. concog.2013.09.009. 12. Addis DR, Tippett LJ. Memory of myself: autobiographical memory and identity in Alzheimer’s disease. Memory. 2004;12(1):56–74. https://doi.org/10.1080/09658210244000423.

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1 3. Erler A. Does memory modification threaten our authenticity? Neuroethics. 2011;4(3):235–49. 14. Kass LR. Beyond therapy: Biotechnology and the pursuit of human improvement. Washington, DC: The President’s Council on Bioethics; 2003. 15. Turner JC, Tajfel H. The social identity theory of intergroup behavior. In: Psychology of intergroup relations, vol. 5. Chicago: Nelson Hall; 1986. p. 7–24. 16. Cohen-Mansfield J, Golander H, Arnheim G.  Self-identity in older persons suffering from dementia: preliminary results. Soc Sci Med. 2000;51(3):381–94. 17. Darby RR, Edersheim J, Price BH.  What patients with behavioral-variant frontotemporal dementia can teach us about moral responsibility. AJOB Neurosci. 2016;7(4):193–201. 18. Rankin K, Baldwin E, Pace-Savitsky C, Kramer J, Miller B. Self awareness and personality change in dementia. J Neurol Neurosurg Psychiatry. 2005;76(5):632–9. 19. Buchanan AE, Brock DW.  Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press; 1989. 20. Dresser R. Advance directives implications for policy. Hast Cent Rep. 1994;24(6):S2–5. 21. Dresser R.  Dworkin on dementia: elegant theory, questionable policy. Hastings Cent Rep. 1995;25(6):32–8. 22. Dworkin R. Autonomy and the demented self. Milbank Q. 1986;64:4–16.

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Respect for Autonomy in the Face of Dementia: The Case of Deception Agnieszka Jaworska

Contents 4.1  D  eception as a Form of Disrespect 4.2  Capacity for Autonomy in the Context of Dementia 4.3  Respecting the Capacity for Autonomy in the Context of Dementia: Is Deception Disrespectful? 4.4  Conclusion References

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Abstract

This chapter concerns the ethics of using various forms of deception for the sake of dementia patients’ overall comfort, practices commonly adopted by caregivers and nursing homes. Although it may be argued that the benefits of such practices outweigh their harms, it still seems that patients are being treated disrespectfully by being deceived, casting doubt on whether doing so is morally acceptable. However, analyzing the disrespect of deception as consisting in a type of violation of autonomy, this chapter argues that the disrespect typical of deception does not apply to many of these practices, as they actually partially restore the patient’s autonomy rather than undermine it. In reaching this conclusion, the agential capacities of Alzheimer’s patients are considered in light of the requirements for autonomy and this disease’s neuropathology, in order to bring out the role of the deceptive practices in question in compensating for impairments of autonomy.

A. Jaworska (*) Department of Philosophy, University of California, Riverside, Riverside, CA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_4

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In her New Yorker essay, “The Memory House,” Larissa MacFarquhar [1] describes various deceptive and manipulative practices implemented in the memory units of nursing homes in order to help the residents suffering from dementia accept their new surroundings, to calm them and ease their confusion and the associated anxiety. Some homes are designed as elaborate indoor playsets, complete with fake front porches, fake bus stops, make-believe shops, and even fake skies that change as the day progresses. These homes try to cater to the specifics of their residents’ past lives, attempting to recreate the look of the community the residents used to live in; some even offer separate quarters and matching staged décor to fit different residents’ class and social status. Other devices include “simulated presence” audiotapes, which are meant to lead a listening resident with dementia to believe that he or she is having a real conversation with a loved one, while in fact the loved one has prerecorded parts of a scripted dialogue about topics and memories dear to the resident. Well-placed pauses in the recording encourage a response and thus a conversation-­like experience. More mundane devices are also being utilized to promote tranquility, such as life-like dolls with feeding and changing accessories that lull some residents into the feeling of nurturing a child. Caregivers may also be tempted to deceive patients with dementia in contexts where no props are required. Imagine, for example, a patient who keeps forgetting that a loved one has passed away and repeatedly enquires about that person’s whereabouts. Telling the patient each time anew that the loved one has died seems to senselessly reintroduce the trauma of grief, so many caregivers feel it is better to lie and withhold the painful information. Some observers may believe that, despite our customary unease about lying, all these practices of utilizing deception in the care for dementia patients are fully justified. On this view, what matters are the consequences of deception, and in all these cases the deception does a lot of good and little harm: the patient is spared pain and anxiety, comforted with a sense of security, and, given the memory impairment, there is little chance that the patient will discover the deception. Even if we follow this general approach and evaluate these practices only on the basis of their consequences, significant considerations opposing this sort of deception must nonetheless be acknowledged. There is a real worry that patients who are treated as appropriate targets of systematic deception and infantilization are subsequently at risk of being afforded lesser moral regard across the board, especially by observing third parties (who may be inattentive to the deceptions’ positive intent), leading to a snowballing effect of neglect and blanket disrespect. One also has to consider that, in the course of the normal progression of dementia, patients’ abilities tend to fluctuate significantly, so some patients may catch on to the deception while in a more competent state, potentially reversing the intended result [1]. But even if one thinks that, on balance, the deception would do more good than harm, some observers may still retain deep moral unease about these practices: the

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deception seems inherently demeaning and disrespectful to the patients, regardless of the consequences. The patients may no longer be able to understand disrespect (whether in this particular form or even in general), but this does not change the fact of disrespect. This chapter will focus on this last worry concerning these types of deceptive practices. My goal will be to unpack the intuitive idea that lying is inherently disrespectful to the deceived person and to examine the extent to which this idea is still applicable in the context of Alzheimer’s dementia, and especially in the foregoing kinds of examples. Accomplishing this will require not only philosophical analysis but also an empirical understanding of the realities of dementia, including key lessons from neuroscience. Given the sense that deception is inherently disrespectful but that, in the context of dementia, deception can also substantially benefit the patient, one may be led to see the cases I have described as involving irresolvable moral dilemmas: respect for the patient and the well-being of the patient clash in these cases, and there is no principled way of resolving this clash. Part of my goal is to diffuse this sense of dilemma, at least in some of the scenarios at issue. I will argue that, under certain conditions, deception that aims to compensate for the impaired aspects of the deceived person’s capacity for autonomy is not disrespectful, but rather autonomy-affirming.

4.1

Deception as a Form of Disrespect

Let us begin with the intuition that lying, in general, is disrespectful to the person being lied to. How should we understand lying as a form of disrespect? I am attracted to a view that construes disrespect as a violation of a person’s capacity for autonomy. So let us briefly reconstruct how this might work, first for disrespect overall, and then for the disrespect of lying in particular.1 We, ordinary mature human beings, are special kinds of agents: persons.2 What makes a person so special? Agents that are not persons (e.g., cats, dogs, infants) experience things, can feel pleasure and pain, have desires and goals that they aim to satisfy. Persons, however, are a special and more sophisticated class of agents because they have ideas about what kind of actions they want to perform, what  My analysis is influenced by Hill [2] and Korsgaard [3].  Here I am using the term ‘person’ in a metaphysical sense, delineating a type of agent. This is not to be confused with a moral sense, which construes a ‘person’ as a bearer of special rights, leaving it open which beings qualify for those rights. It is also not to be confused with the current legal sense of ‘person’ which bestows legal rights on all (born) human beings, regardless of their capacities. 1 2

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kind of life they want to lead, or conceptions about what is good for them, and they can guide their actions and, more broadly, their lives in accordance with such conceptions, and thus live by their own lights. In short, what is distinctive about persons is their capacity for autonomy. Roughly, the capacity for autonomy has two components: 1. A person has ideas about the kind of life he or she is to be leading: values, conceptions of the good, concerns, cares, etc. 2. A person can guide his or her life in accordance with these ideas, and this requires various subsidiary capacities, for example, understanding one’s situation, means-­ ends reasoning, planning.3 We disrespect someone as a person if we devalue this complex capacity for autonomy by impeding or interfering with the person’s ability to run their life by their own lights. In particular, then, lying (and deception more broadly) disrespects a person because it interferes with their exercise of this capacity. If you lie to a person about something that is relevant to how they want to run their life, you thereby interfere with this project; you are manipulating their access to the relevant information so as to bend their choices to your design rather than allowing the person’s own design to unfold.4 You are attempting to make them base their choices on the false picture of reality supplied by you, instead of the more accurate picture they would otherwise be able to discover more easily. If this is what is wrong with lying, then lying can be wrong even if the liar has good intentions—even if the liar is trying to protect the person from pain or distress, for example. Thus, lying to a person about matters that pertain to how they lead their own life cannot be made acceptable simply by the fact that this deception can spare the person from bad experiences. It is crucial to this picture that lying and deception can be wrong, in this sense of being disrespectful, only if the individual in question is a person, that is, only if the individual is capable of autonomy in the first place. Thus, to assess the rightness or wrongness of the deceptive practices in the context of dementia, we must first assess the capacity for autonomy of the patients in question.

3  I am not taking a stand here on when this capacity is acquired in human development or on whether certain animals (e.g., the great apes) may also possess it. 4  Of course, a person does not come up with this design (Component 1 of autonomy) on their own, but rather in the context of interpersonal relationships. Still, the person makes the design their own in virtue of the attitudes the person holds (values, etc.).

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Capacity for Autonomy in the Context of Dementia5

There doubtlessly comes a point toward the end of the trajectory of progressive dementia, such as Alzheimer’s disease, at which the patient loses the capacity for autonomy altogether: not only are they unable to direct their life according to their own design, but they cannot even retain a conception of having a life to lead, nor even any design for individual actions that they would like to implement at a given moment. However, the middle stages of Alzheimer’s disease are more interesting and nuanced when it comes to capacity for autonomy and the consequent possibilities of disrespect. The neuronal degeneration (associated with pathological buildup of amyloid and tau protein) characteristic of Alzheimer’s disease and its progression is not evenly distributed throughout the cerebral cortex. So, let us consider in some detail how the typical trajectory of this degeneration would likely affect the two components of the capacity for autonomy. It has been known for some time that, at the onset of Alzheimer’s disease, neuronal damage concentrates in the hippocampus (and the associated entorhinal cortex). In subsequent stages, even though the damage spreads, the effects on the hippocampus are much more acute in comparison with any other region of the brain [5, 6]. The hippocampus is critical for acquiring and processing long-term explicit declarative and episodic memory (memory for facts and experienced events). Although the acquisition of short-term memory and the eventual storage of long-term memories are processed elsewhere, the key function of the hippocampus is to convert fresh short-term memories into lasting long-term memories [7, 8]. Hence, damage to the hippocampus does not disturb so much a person’s access to their immediate experience, nor to memories of what they had experienced long before the damage, but it does cause them to keep losing track of ongoing events, resulting in a significantly diminished recollection of the prior day [9]. This damage makes it difficult to return to a recent thought or memory after one’s attention has shifted to something else [8]. Of course, impairments of this sort are familiar as the standard early clinical symptoms of Alzheimer’s disease. As these impairments become more severe, they lead to an inability to stay on track of any complex reasoning, including means-ends reasoning, planning, or even grasping one’s surroundings. The more recent neuroscientific findings situate the progression of Alzheimer’s disease within wider ranging discoveries about patterns of brain functioning and activation called “intrinsically connected networks.” These are networks composed of distinct and often anatomically far-flung brain structures that tend to activate and deactivate together in the normal human brain, forming functionally integrated  This section adapts selections from Jaworska [4] and updates the content of its 2016 Postscript.

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systems [10]. In Alzheimer’s disease, the intrinsically connected network that is most manifestly disrupted is the so-called “default mode network.” Neuronal degeneration distinctive of Alzheimer’s disease initially develops in one hub of this network—the hippocampus—and then spreads preferentially within the pathways of this network [11, 12]. Thus, the main damage in the middle stages of Alzheimer’s disease affects the functioning of the default mode network, with other areas of the brain largely spared. Beyond the hippocampal function, emphasized above, of converting short-term memory into long-term memory, the default mode network supports a broader array of abilities that might be labeled “time travel”: chiefly, the ability to organize one’s life into a temporally extended sequence—remembering one’s past and imaginatively extending the timeline of one’s life into the future (through intentions, planning, etc.)—but also other uses of imagination to project oneself into alternative situations or perspectives, such as the viewpoint of a different person or even a different spatial perspective needed for navigation [13, 14]. Furthermore, the default mode network has interesting correlations with another intrinsically connected network called the salience network. First, in a normal human brain, decreased activity in the default mode network is associated with increased activity in the salience network and vice versa [15, 16]. It remains unclear whether this inverse correlation is due to direct causal influence between the networks or to external factors, such as the possibility that many tasks performed by the brain that require the activity one of these two networks simply do not require the engagement of the other network [17]. A more direct correlation between the two is suggested by some evidence from Alzheimer’s disease that, as dementia weakens the default mode network, the salience network becomes increasingly active and connected [18, 19].6 As it relates to our topic, this is important because of the salience network’s pivotal role in social and emotional processing. Namely, as the label “salience” indicates, the salience network is thought to facilitate the selection of what the cognitive system focuses its attention and resources on, out of the enormous amount of both external and internal information that the brain is inundated with and processing in its submodules at any given moment. Upon swiftly identifying what is most relevant, the salience network generates the appropriate emotional response, which then recruits other resources and guides our spontaneous behavior [10]. A simple illustration of a normally operating salience network is a quick pivot to incoming information implicating one’s security or safety when one is engrossed in an unrelated task (e.g., when you hear a loud bang you immediately interrupt work and run out of the room to investigate what is happening). However, besides the matters of security or safety, the salience network is more broadly understood as directing attention and cognitive resources within the brain system to what is 6  Badhwar et al. [18] is a meta-analysis of available studies that supports this claim. However, Brier et al. [20] found an increase in the salience network connectivity only in pre-Alzheimer’s mild cognitive impairment (MCI), with a decrease in mild Alzheimer’s disease, and Thomas et al. [21] found unchanged connectivity in MCI compared to cognitively normal controls, but, again, decreased connectivity in mild Alzheimer’s disease.

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personally relevant, which maps naturally onto what the person values and cares about. One might then reasonably expect that the increases in the salience network’s activity and connectivity observed in the progression of Alzheimer’s disease would sustain or perhaps even enhance the patient’s emotional attunement to what is important to them, which is the hallmark of valuing and caring. Nonetheless, research in this area is only just beginning to emerge, and the claims are controversial. Sturm et al. [22] report a suggestive result that the experience of parallel negative emotions in response to the negative emotions of others (dubbed “emotional contagion”) is enhanced in mild Alzheimer’s disease compared to normal controls and, even more surprisingly, is further enhanced in moderate Alzheimer’s disease as compared to mild. The increase in emotional contagion was correlated with smaller volume in the default mode network. Does this suggest an enhancement of the capacity to care and value? One may worry that the increased connectivity in the salience network might instead disrupt and warp this capacity. For example, a heightened emotional contagion might mean that the person is overly preoccupied with or even overwhelmed by their own anxious reactions to the emotions of others, which impedes their attunement to what they deem important. Another worry is that the strengthening of connectivity in the salience network might generate new cares and values that would be inauthentic due to being mere artifacts of Alzheimer’s disease—for example, a new concern about safety in someone who used to be a daredevil. It is one thing if Alzheimer’s disease causes certain former values to become more robust, but it would be diametrically different if the disease creates an imbalance between values or creates values de novo. Addressing these worries adequately must await a fuller mapping of the functioning of the salience network and of how the increased connectivity observed in Alzheimer’s disease affects its operations. For example, anecdotally, clinicians and caregivers frequently report that Alzheimer’s patients in their care become more sweet, loving, and attentive to them as their memory fades. So, suppose that a key effect of the increased connectivity in the salience network is not only heightened emotional contagion but also heightened other-directed empathy, that is, feelings of concern, sympathy, and compassion for the plight of others. This could plausibly be interpreted as an enhancement rather than disruption of the capacities to care and value, due to greater attunement to the emotions of others. Such attunement is not, in itself, a new care or value. Rather, it enhances one’s appreciation and understanding of others as suitable objects of care and value, and perhaps also of various ideals involving sensitivity to the situation of others, such as tolerance and fairness. Heightened other-directed empathy can then in turn engender new cares or values but in a way that, arguably, is not deviant, since it comes from a heightened appreciation of the nature and significance of the object of concern. On the other hand, if the increased salience network connectivity turned out to lead to new cares or values more directly, not by way of any new experience or reasoning, these would be grounds to think that the capacity to care and value has been disrupted rather than augmented. Despite these uncertainties, it is still safe to surmise that the progression of Alzheimer’s disease involves steady deterioration in the default mode network

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combined with the relative preservation, and possibly even enhancement, of the salience network. In light of what is known about these networks, what is the likely impact of this progression on the capacity for autonomy? The losses in the “time travel” abilities anchored in the default mode network certainly impair one’s understanding of oneself as a temporally extended agent, with a rich past leading to the present and projecting into the future via planning. One cannot update or even maintain one’s life narrative. But one’s understanding of what is personally important, anchored in the preserved salience network, seems to be decoupled from time travel, autobiographical narrative, and the ability to shift perspective. Even without the rich grasp of oneself as a temporally extended agent, the patient can retain enough of a sense of self so as to see their life, or at least their action in the moment, as something that matters and have ideas for how to shape it and how it can go better or worse. Thus, patients in the moderate stages of Alzheimer’s disease likely retain a central part of capacity of autonomy, Component 1 above. Nevertheless, deficits in the default mode network very severely undermine Component 2 of the capacity for autonomy: the ability to take effective actions that are guided by Component 1, viz., the ability to live up to one’s own ideas about what is important and to be done. The impairment of the hippocampus alone prevents one from keeping track of one’s thought process, and so precludes making conceptual, logical, and causal connections that take time and effort. Combined with the inability to update memory, this can lead to profound disorientation. If a person cannot put two and two together even regarding their own surroundings and circumstances, they certainly cannot figure out what is important to do in these circumstances, despite having an intact sense of what is important in general. And even if they manage to maintain a good grip on their situation, they cannot keep track of the complex reasoning required to figure out the best means to satisfy an end they might have in mind. The difficulties with projecting oneself into the future and into alternative scenarios, associated with the impairment of the default mode network, further hamper means-ends reasoning and planning. Moreover, insofar as what remains important to the person involves other people, as is typically the case, impairments in perspective-taking would prevent the person from understanding the needs and points of view of others, again hindering the person’s ability to translate what is important to them into appropriate choices and actions. In sum, the finding that Alzheimer’s disease spreads primarily in the default mode network leads to the assessment that this trajectory of degeneration largely spares, at least for a time, Component 1 of the capacity for autonomy, while tearing down Component 2. Based on this mixed assessment, do Alzheimer’s patients in moderate stages retain a capacity for autonomy worthy of respect? Given the presence of Component 1, Component 2 can be at least partially recovered with external help. Component 1 is the indispensable core of the capacity for autonomy. Once an agent is capable of having some conception of what is important to him or her, others can step in to help with the reasoning necessary to translate these ideas into concrete steps that need to be enacted, recovering Component 2 on the person’s behalf. In this way, the patient retains a rudimentary capacity for autonomy worthy of respect.

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 especting the Capacity for Autonomy in the Context R of Dementia: Is Deception Disrespectful?

For patients in later stages of dementia who have lost both aspects of the capacity for autonomy, respecting their autonomy in their current state is no longer relevant and so, more specifically, the worry that lying would be disrespectful of them is not relevant either. The caregiver can safely focus on making the patient’s experiences as good or pleasant as possible, keeping them cheerful and free of anxiety. Using lying as a means to this end would not be inherently problematic. (It may nonetheless be problematic if it has detrimental effects downstream, such as leading others to mistreat or neglect the patient, but this is not our focus here.) But what does respect for autonomy require in the middle stages of Alzheimer’s disease, when only Component 1 is present and Component 2 is largely missing? For those who carry an obligation to act on the patient’s behalf (caregivers, relatives, etc.), mere noninterference with the person’s attempts to exercise their autonomy is not adequate. In order to respect these patients’ diminished but still real capacity for autonomy, caregivers need to nurture and support this capacity. This includes both helping to sustain the patients’ (likely) fragile sense of what is still important to them (protecting Component 1) and also translating these ideas into concrete decisions and choices in the patient’s concrete circumstances (reconstituting Component 2 on the patient’s behalf). And, interestingly, while performing the latter, sometimes caregivers may in fact have to go against what the patients themselves explicitly choose. Admittedly, this may seem counterintuitive since, in treating an ordinary fully-capacitated adult, resisting the person’s own choices would interfere with autonomy and would thus be an act of disrespect. Consider the case of a grandmother in the middle stages of Alzheimer’s disease who still values spending time with her grandchildren and would view the prospect of losing their routine visits as a significant impoverishment of her current life. However, she does not like the chores of dressing and bathing and is no longer able to reason that were she to greet her young grandchildren half-dressed, malodorous, and disheveled, the children would likely resist visiting her on future occasions. If left to her own devices, this grandma would opt for greeting her grandchildren at the door in her disheveled state. In this case, cajoling her, against her will, to bathe and get dressed before the grandchildren arrive would support her fragile remaining ability to actualize her autonomy. Overruling her actual choice would thus be an act of respect, rather than disrespect, of her remaining capacity for autonomy. This suggests that lying for the same purpose, when necessary, might also be allowed and perhaps even required by the principle of respect for autonomy. Let us then develop how these two cases might be parallel. Take first the creation of deceptive artificial environments for the purpose of allowing the person to play their accustomed role in an activity they especially value, or for the purpose of maintaining an important relationship in their lives. For example, imagine a former professional chef who struggles mightily against letting go of his role as the master of the kitchen. Suppose you play along and pretend that he is the one in charge at meal times, while in fact you are helping him to do small

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tasks supportive of the valued activity rather than the full activity itself—mixing the ingredients rather than cooking the whole entree, for example.7 Or imagine a mother with dementia who still clearly loves the woman who visits her regularly, but forgets that she has adult children and keeps mistaking her visiting daughter for her long-­deceased sister. The daughter plays along with this in order to avoid stress and constant confusion in their relationship and to focus on maintaining and strengthening their emotional bond. In both cases, the deceiver supports the remnants of the person’s autonomy, so their deceptive actions serve the same value as the ordinary prohibition against lying is meant to serve. But what matters here is not just that the deceptive action serves the goal of enhancing autonomy. After all, in the case of fully capacitated adults, deception and other forms of paternalism aimed at ultimately enhancing the person’s autonomy would still be disrespectful and pernicious [2]. (Think of deceiving a person in order to help them gain confidence so that they are better positioned to make their own choices in the future.) What sets these dementia cases apart is that, more specifically, the deception is necessary to compensate for deficiencies in the patient’s capacity for autonomy, that is, to supply the missing links in Component 2. In the cooking case, the patient is no longer able to understand that he has lost the ability to cook a full meal. Were he allowed to try, or were he asked to help in an explicitly subsidiary role, he would become frustrated at his lack of mastery and would not accomplish anything. The deception is needed to compensate for his confusion about his current level of skill and to allow him to at least partially participate in what he thinks is important. In the mother–daughter case, the mother is no longer able to understand the precise nature of their relationship. If she were constantly reminded of the truth, her confusion would likely become the focus of the relationship, to the detriment of the emotional bond that matters most to the mother. Thus, in both cases, the deception is necessary to compensate for the patient’s lack of understanding and to secure their participation in what they continue to deem important. Subverting one exercise of autonomy in order to support another would be disrespectful, but here autonomy could not be exercised at all without the deception and this is why this deception is not disrespectful. Note further that, on this analysis, it matters a great deal that, to the extent possible, the activity or relationship facilitated by deception is real, not sham. For example, if preparing meals is still important to the person, helping him to actually buy the needed groceries and to engage in tasks that actually lead to the cooking of real meals does allow the person to live in accordance with his values to some extent. The same cannot be said of roaming around a make-believe town with store and business facades in the belief that one is shopping, or of admiring artificial lighting in the belief that one is looking at real stars. Similarly, playing with dolls does not add up to one actually living in accordance with one’s idea that nurturing someone is an important part of life. And again, tricking a person to think that she is having a conversation with a loved one, while she is in fact responding to prerecorded messages, does not add up to aiding her participation in a valued relationship. Thus, 7  Both this case and the above case of a grandmother are inspired by the story of Mrs. Rogoff discussed in Jaworska [4].

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environments with staged elements designed to compensate for their residents’ lack of understanding of their waned abilities, which nonetheless facilitate participation in real activities, such as cooking, singing, dancing, or periodically interacting with real babies or children, can indeed buttress the residents’ remaining autonomy and are respectful and appropriate for patients at the corresponding ability level. That said, in more extreme cases, where engaging in real and consequential activities is not possible, complete pretense may still be valuable for supporting remnants of autonomy insofar as it allows the person to hold on to the conception of what is important to him or her that otherwise would likely be forgotten and lost. Under those circumstances, this deception, too, would not be disrespectful. Next, consider cases of a different sort, where lying serves to spare the person emotional pain, worry, and anxiety. Recall the case of a person with dementia who does not remember that her loved one has died and asks after them repeatedly. Her caregiver deflects the question, pretending that the loved one is still alive. For this response to be consistent with respect for the patient’s remaining capacity for autonomy, the goal must be to compensate for the patient’s impairments with an eye to helping the patient live in accordance with her current remaining values. The memory loss is preventing the patient from processing the loss of the loved one in a normal way and instead she is repeatedly retraumatized by the loss. Her impairment causes the trauma and lying to shield her from such recurrent grief in no way hinders the patient from living in accordance with her values. In fact, lying may well facilitate living in accordance with her values, insofar as avoiding the retraumatization allows the patient to focus on other activities and relationships she values that are still available to her. It is instructive to compare the case above with a different one that may, on the surface, seem similar. Suppose that a loved one of a patient with dementia has just died. When the patient asks after the loved one, his caregiver decides to conceal this news from the patient with the idea that it will be easy to keep the information from him and that it will spare him terrible emotional pain. In this case, unlike the previous one, the caregiver is preventing the patient from enacting his values in the standard way. The patient is altogether barred from processing the news of an event that is very important to his life in the manner that he sees fit. Furthermore, this impeding of autonomy cannot be undone by the fact that, just as in the previous case, the deception may also, to an extent, facilitate the patient living in accordance with his values, insofar as avoiding the emotional pain of grief allows the patient to focus on other activities and relationships he values that are still available to him. Here, deception subverts one exercise of autonomy in order to support another and is still disrespectful.8 8  In a yet different type of case, the person with dementia would be learning about the death of a loved one for the first time, but they may be unable to process this news in the standard way. For example, they are likely to quickly forget who has died, but the emotional impact of the news would likely linger on, leaving the person with a general sense of grief that they are not in a position to understand and gradually work through. If a caregiver deceives the person in order to spare them from this sort of experience, this is more akin to the case from the previous paragraph – an attempt to compensate for an impairment of autonomy and therefore not disrespectful. (Thanks to Paula Wolfson for emphasizing this scenario.)

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I have argued that, in some cases, deception directed at people suffering from dementia can support and not at all impede their fragile ability to exercise autonomy. However, this assessment must be reversed if it turns out that the patient themselves, in their current state, has views about being lied to and specifically does not want to lead a “make-believe” life. In that case, any deception would go directly against what they take to be important in their life and would be disrespectful to the person.

4.4

Conclusion

Cases in which deception or manipulation is tangibly beneficial to a patient with dementia can appear deeply morally dilemmatic: the deceptive actions, on balance, promote the well-being of the patient, but they also seem fundamentally disrespectful. I have shown that, in many such cases, the second horn of the apparent dilemma dissolves under closer scrutiny. Deception is not disrespectful when its aim is to support the deceived person’s autonomy by directly compensating for an autonomy-­ impeding cognitive impairment. Autonomy is truly supported in such cases only if the person’s own current values would not rule out such deception and only if the person is in fact assisted in realizing their values to the extent possible (as opposed to it merely seeming to the person that their values are realized). When these conditions are met, respect-based objections to deception do not apply. Such deception, being not only beneficial to the person but also not disrespectful, appears morally unproblematic and easily permissible. My analysis leaves unaddressed many other cases—including those of the “sham” activities discussed earlier—in which these strict conditions are not met and deceiving a person with dementia would indeed be disrespectful. Many such cases remain truly dilemmatic: the deception, however disrespectful, still alleviates real anxiety and has other emotional or even cognitive benefits. These dilemmas are like all other conflicts between respecting a person and promoting the person’s well-­ being that standardly arise even in interactions with unimpaired adults. Their resolution is likely not specific to the circumstances of dementia—it largely depends on one’s general view on how to balance promoting the well-being of a person versus respecting that person’s autonomy. Acknowledgement  An invitation to the “Should You Lie to a Person with Dementia?” panel at the McCoy Family Center for Ethics in Society at Stanford University inspired my work on this chapter. I am grateful to the participants in this event, as well as to the editors of this volume, for helpful comments, and to Shmuel Gomes for editorial assistance. Special thanks to Winston Chiong, Katherine Rankin, and William Seeley for sharing their knowledge of the neuroscience of Alzheimer’s disease, and to Winston Chiong for prompting several key corrections.

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References 1. MacFarquhar L. The memory house. New Yorker. 2018;94(31):42–55. 2. Hill TE.  Autonomy and benevolent lies. In: Autonomy and self-respect. Cambridge: Cambridge University Press; 1991. p. 25–42. 3. Korsgaard CM. The right to lie: Kant on dealing with evil. In: Creating the kingdom of ends. Cambridge: Cambridge University Press; 1996. p. 133–58. 4. Jaworska A. Ethical dilemmas in neurodegenerative disease: respecting patients at the twilight of agency. In: Illes J, editor. Neuroethics: anticipating the future. Oxford: Oxford University Press; 2017. p. 274–93. 5. Geula C. Abnormalities of neural circuitry in Alzheimer’s disease: hippocampus and cortical cholinergic innervation. Neurology. 1998;51(Suppl. 1):S18–29. 6. Laakso MP, Hallikainen M, Hänninen T, Partanen K, Soininen H. Diagnosis of Alzheimer’s disease: MRI of the hippocampus vs delayed recall. Neuropsychologia. 2000;38(5):579–84. 7. Riedel G, Micheau J. Function of the hippocampus in memory formation: desperately seeking resolution. Prog Neuropsychopharmacol Biol Psychiatry. 2001;25(4):835–53. 8. Squire LR, Zola-Morgan S.  The medial temporal lobe memory system. Science. 1991;253(5026):1380–6. 9. Squire LR, Zola-Morgan S.  Memory: brain systems and behavior. Trends Neurosci. 1988;11(4):170–5. 10. Seeley WW, Menon V, Schatzberg AF, Keller J, Glover GH, Kenna H, Reiss AL, Greicius MD. Dissociable intrinsic connectivity networks for salience processing and executive control. J Neurosci. 2007;27(9):2349–56. 11. de Calignon A, Polydoro M, Suárez-Calvet M, William C, Adamowicz DH, Kopeikina KJ.  Propagation of tau pathology in a model of early Alzheimer’s disease. Neuron. 2012;73(4):685–97. 12. Raj A, Kuceyeski A, Weiner M. A network diffusion model of disease progression in dementia. Neuron. 2012;73(6):1204–15. 13. Buckner RL, Carroll DC. Self-projection and the brain. Trends Cogn Sci. 2007;11(2):49–57. 14. Østby Y, Walhovd KB, Tamnes CK, Grydeland H, Westlye LT, Fjell AM. Mental time travel and default-mode network functional connectivity in the developing brain. Proc Natl Acad Sci. 2012;109(42):16800–4. 15. Fox MD, Snyder AZ, Vincent JL, Corbetta M, Van Essen DC, Raichle ME. The human brain is intrinsically organized into dynamic, anticorrelated functional networks. Proc Natl Acad Sci. 2005;102(27):9673–8. 16. Raichle ME, MacLeod AM, Snyder AZ, Powers WJ, Gusnard DA, Shulman GL. A default mode of brain function. Proc Natl Acad Sci. 2001;98(2):676–82. 17. Chiong W.  Salience networks: brain networks and the self in dementia. In: Miller BL, Cummings JL, editors. The human frontal lobes: functions and disorders. 3rd ed. New York: Guilford; 2018. p. 217–34. 18. Badhwar A, Tam A, Dansereau C, Orban P, Hoffstaedter F, Belleca P. Resting-state network dysfunction in Alzheimer’s disease: a systematic review and meta-analysis. Alzheimers Dement. 2017;8(1):73–85. 19. Zhou J, Greicius MD, Gennatas ED, Growdon ME, Jang JY, Rabinovici GD, Kramer JH, Weiner M, Miller BL, Seeley WW.  Divergent network connectivity changes in behavioural variant frontotemporal dementia and Alzheimer’s disease. Brain. 2010;133(5):1352–67. 20. Brier MR, Thomas JB, Snyder AZ, Benzinger TL, Zhang D, Raichle ME, Holtzman DM, Morris JC, Ances BM. Loss of intranetwork and internetwork resting state functional connections with Alzheimer’s disease progression. J Neurosci. 2012;32(26):8890–9.

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21. Thomas JB, Brier MR, Bateman RJ, Snyder AZ, Benzinger TL, Xiong C, Raichle M, Holtzman DM, Sperling RA, Mayeux R, Ghetti B, Ringman JM, Salloway S, McDade E, Rossor MN, Ourselin S, Schofield PR, Masters CL, Martins RN, et al. Functional connectivity in autosomal dominant and late-onset Alzheimer disease. JAMA Neurol. 2014;71(9):1111–22. https://doi. org/10.1001/jamaneurol.2014.1654. 22. Sturm VE, Yokoyama JS, Seeley WW, Kramer JH, Miller BL, Rankin KP. Heightened emotional contagion in mild cognitive impairment and Alzheimer’s disease is associated with temporal lobe degeneration. Proc Natl Acad Sci. 2013;110(24):9944–9.

Part II Empirical and Clinical Implications

5

Directing the End of Life in Dementia Katherine C. Dildy and Emily A. Largent

Contents 5.1  I ntroduction 5.2  F  oundational Issues 5.2.1  Autonomy 5.2.2  Personal Dignity 5.2.3  Self-Identity 5.2.4  Interests 5.3  End-of-Life Decision-Making by, with, and for the Person with Dementia 5.3.1  By the Person with Dementia 5.3.2  With the Person with Dementia 5.3.3  For the Person with Dementia 5.4  Caregiver Needs 5.5  Interventions at the End of Life 5.5.1  Withholding or Withdrawing Care 5.5.2  Medical Aid-in-Dying 5.5.3  Suicide 5.6  Conclusion References

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Abstract

Delivery of high-quality end-of-life care—care that both increases the likelihood of desired outcomes and is consistent with current professional knowledge—to persons with dementia is fraught with challenges. Among K. C. Dildy University of Pennsylvania, Philadelphia, PA, USA e-mail: [email protected] E. A. Largent (*) Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Leonard Davis Institute of Health Economics, Philadelphia, PA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_5

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these, a key challenge is the need for early and ongoing decision-making. Due to progressive cognitive and functional decline, persons with dementia may lack the capacity to decide for themselves, and end-of-life decision-making will often fall to surrogate decision makers. If clear directions have not been left by the patient prior to her decline- and even if they have been— surrogates and clinicians are often uncertain whether the care they are providing is the care that the patient would have chosen for herself had she been able to do so. In this chapter, we outline various ethical challenges that arise when directing the end of life in dementia. We first consider four foundational issues relevant to decision-making by and for persons with dementia: autonomy, personal dignity, self-identity, and interests. Next, we consider how decisions relevant to end-of-life care might be made by, with, and for persons with dementia with a particular focus on US legal mechanisms. Finally, we evaluate several interventions people with dementia might consider at the end of life and their concomitant ethical, legal, and clinical dimensions.

5.1

Introduction

Worldwide, over 47 million people have dementia [1]. As of 2019, 5.8 million of these live in the United States [2]. Delivery of high-quality end-of-life care to persons with dementia—care that increases the likelihood of realizing patients’ desired outcomes and that is consistent with current professional knowledge—is particularly complex [3, 4]. Many challenges arise due to the clinical course and nature of dementia; as patients become increasingly cognitively and functionally impaired, it becomes harder to assess symptoms and to deliver care. A related challenge is the need for ongoing medical decision-making. Many people with dementia want to make decisions pertaining to their care, yet as dementia progresses, their appropriate degree of involvement wanes, and decision-making often falls to surrogates. Patients may or may not leave directions regarding their future care to guide surrogate decision makers, and—even when they do—family members and clinicians are often uncertain whether the care being provided is that which the individual would have chosen for herself were she able. Decisions surrounding end-of-life care for patients with dementia are emotion- and value-laden, often made in the absence of good empirical evidence, and influenced by numerous factors such as the degree of family and physician involvement and the quality of communication about diagnosis and prognosis [5]. The stakes are, moreover, quite high, as poor decision-making in this context can lead to the provision of unwanted or inappropriate care. Evidence consistently shows persons with dementia receive suboptimal end-of-life care as compared to other patient populations [6, 7]. Though high-quality end-of-life care that is medically appropriate and concordant with patient values is possible for persons with dementia, strategies are needed to surmount barriers, including barriers to sound decision-making.

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Here, we outline various ethical considerations when directing the end of life in dementia. We first consider foundational concepts—autonomy, personal dignity, self-identity, and interests—as they pertain to decision-making in dementia care. Next, we consider various mechanisms by which decisions might be made by, with, or for a person with dementia with a particular focus on mechanisms available in US law. Finally, though acknowledging that the sweep of decision-making in dementia is broad and resisting the conclusion that dementia is necessarily a fate worse than death, we focus our attention on select interventions that people with dementia can choose that will hasten their deaths and the concomitant ethical, legal, and practical dimensions of those decisions.

5.2

Foundational Issues

Preferences are understood to play an essential role nearing the end of life. For the individual, shaping the end of life to conform to one’s preferences can be as personally significant as carving a path through life in accordance with one’s values and beliefs. If surrogate decision makers are involved, the individual’s preferences— both expressed and inferred—can reassuringly guide decisions made on the individual’s behalf. For clinicians, honoring an individual’s preferences and providing care consistent with them holds ethical significance. This straightforward understanding of the role of preferences in end-of-life care is, however, significantly complicated in the context of dementia. Persons with dementia may be limited in their ability—or wholly unable—to express contemporaneous preferences as cognitive decline progresses. They may previously have expressed preferences relevant to end-of-life decision-making, though at a time and under circumstances far removed from the present. How should we demonstrate respect for persons in these circumstances? To what extent should surrogate decisionmakers and clinicians respect or even privilege preferences expressed by an individual prior to cognitive decline when charting the course for end-of-life care? These are philosophical and ethical questions with significant practical relevance. To begin to address these issues, we must grapple with four foundational concepts: autonomy, personal dignity, self-identity, and interests. As we outline below, how we understand these concepts may lead to both different decision-making processes and different outcomes.

5.2.1 Autonomy Respect for persons entails two moral requirements: that individuals be treated as autonomous agents and also that those with diminished autonomy are protected. Autonomy, or self-governance, is a privileged concept in medical ethics [8]. Dworkin explains: “[a]utonomy encourages and protects people’s general capacity to lead their lives out of a distinctive sense of their own character, a sense of what is

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important to and for them” [9, p. 224]. Philosophers have offered a range of accounts of what it means to be autonomous. These vary with respect to the capacity and authenticity conditions deemed relevant. Capacity conditions highlight particular, morally relevant features of cognitive and psychological abilities that allow for reflection, evaluation, and motivated planning. Authenticity conditions refer to the ways in which decision-making processes reflect the individual’s unique self-­ identity and interests, concepts we turn to below [10]. Whether a decision qualifies as autonomous also depends on the external influences and internal states that shape it [11]. External influences include the ways in which individuals formed their relevant attitudes and beliefs, as well as how the present context shapes them. Certain internal states—such as mental states based on beliefs that cannot be justified or extreme states of despair and depression—may compromise autonomy. As we discuss below, the tragedy discourse surrounding dementia may powerfully distort individuals’ beliefs about living with dementia, and therefore their preferences for end-of-life care [12]. Standard conceptions of autonomy are highly individualistic and directly link agency to rational capacity. Because dementia erodes cognition, people with dementia will eventually lose the requisite capacity necessary for autonomous choice, understood as independent decision-making. Although people with dementia remain worthy of moral consideration, they are no longer autonomous agents under standard accounts of autonomy. Relational accounts of autonomy, by contrast, shift away from a narrow focus on independence and instead highlight the rich social context in which we deliberate and make decisions. Relational accounts distinguish influences that undermine and influences that promote self-governance. If relationships have played a role in shaping an individual’s values and beliefs and can support an individual’s capacities to make authentic decisions, some scholars claim that surrogates—when they have epistemic access to a patient’s sense of self—may help preserve the autonomy of persons with dementia [13–15].

5.2.2 Personal Dignity Dignity is often invoked as a goal of dementia care, yet the meaning of dignity can be ambiguous in end-of-life debates. Personal dignity—a sense of worthiness subjectively experienced by an individual—is distinct from the universal, basic human dignity associated with human rights [16]. However, basic human dignity requires showing respect for all persons [17]. Personal dignity can be influenced both by the worth and respect one ascribes to oneself as well as the worth and respect ascribed by others [18]. Conceptually, there is a strong linkage between personal dignity, autonomy, and identity. Because dementia results in both an erosion of autonomy and changes in self-identity, it is understandable that we place a great emphasis on dignity in the care of persons with dementia. Feeling respected, listened to, taken seriously, and treated with kindness have been empirically identified as dignity-­ preserving for these individuals [19]. Further, to treat a person living with dementia

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with dignity, decisions made on her behalf should reflect who she is essentially [20]. Accomplishing this will involve both understanding her identity and also making decisions in the spirit of her autonomy.

5.2.3 Self-Identity Dementia uniquely implicates individuals’ core sense of identity. Loosely, identity concerns who we are—the features and attributes that distinguish the self from the other [21]. Philosophers have long debated the persistence of identity over time: they debate what is necessary or sufficient for a past or future being to be the same being existing now. Is it a brute physical relationship—that is, having the same body? Is it the continuity of psychological states and memory? Or, is it the coherence of a constructed life narrative? The latter two views have particular relevance in the context of dementia, but the first undergirds them both. The biological criterion of identity defines the persistence of the body as the basis for personhood and identity. On this view, biological continuity serves as a basis for ethical consideration because the body is the essential feature of the self, independent of either psychological or narrative development [21, 22]. The persistence of the body ensures continuity of moral agency [22, 23]. Psychological continuity views of identity explain that identity persists if there is an inheritance of mental features—such as preferences, beliefs, and memories— though there are disputes over what mental features must be inherited and precisely how inheritance occurs. One feature of these accounts is that entirely new identities can emerge in response to major life changes—like the onset of dementia—if those changes significantly shift one’s mental features [21, 24]. This gives rise to a question of paramount importance, discussed further below: if I am not now the same “person” I was when I gave consent, e.g., to a particular course of end-of-life care, can I be bound by my former self and her desires? Narrativism offers a compelling alternative to psychological continuity. According to narrativism, the stories we tell about ourselves (e.g., the events in our past and how they influence our trajectory) are identity-constituting and determine where one’s self begins and ends. What on first inspection may appear to be disparate psychological states and desires can be made coherent and given meaning by an individual’s narrative [21]. Because one’s narrative self extends into the past and future, whether in one’s own mind or in others’ memory, it is reasonable to project one’s current desires and preferences into the future, through formal directives or through granting surrogate decision-making power in those who know one’s deepest values and preferences. Narratives are, however, shaped not only by individuals but also by the social context that surrounds them. A social account of narrative identity recognizes that persons with dementia have identities that are socially embedded and continuously exercised in relationship with others. This view suggests continuity of identity can be achieved through participation in ongoing, identity-­affirming relationships and social environments.

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5.2.4 Interests Individuals have a multitude of interests. Ronald Dworkin first advanced the distinction between experiential and critical interests [9]. Experiential interests are interests in having desirable felt experiences and are necessarily linked to the present. Critical interests are interests in actualizing what one values—that is, in having what makes a good life. While experiential interests advance our well-being, critical interests fulfill our autonomy through chosen commitments and, crucially, rely on cognitive functioning and an understanding of past reasoning and choices for their formation [9]. We must all grapple with how to balance the critical interests that shape our larger pursuits and the experiential interests that shape our moment-to-­ moment desires. There is disagreement about how best to achieve this balance, particularly for persons with dementia. The prior, competent self that nurtured critical interests and the current self that continues to have experiential interests in the midst of dementia may have conflicting interests. There are three main accounts of how these interests should be balanced. According to critical interests preserved views, previously formed critical interests retain their value in the face of cognitive decline. Here, the narrative theory of identity, discussed above, bridges the self before and the self with dementia and is used to privilege critical interests formed when capacity remained intact. Scholars who consider decisions based on critical interests to be in the best interest of persons with dementia argue that respecting prior preferences that were shaped in consideration of one’s values and goals is fundamental to respecting individuals. Because the process of dying is just as critical to an individual’s life story as the process of living and because individuals often care about their life forming a coherent whole, the argument goes, an individual’s critical interests (construed broadly) should continue to be weighed heavily, even if they conflict with experiential interests [9, 25]. In contrast, advocates of what we will call experiential interests paramount views give greater weight to the current experiential interests of previously competent individuals than to critical interests formed in the past. These views, which are closely tied to psychological continuity accounts of identity, hold that persons with dementia have distinct identities—and therefore distinct interests—from their former selves. If an individual with dementia is an entirely new person, previously endorsed critical interests are not meaningfully hers and cannot justifiably be imposed on the person who now exists, the person with dementia. Thus, we should respect the person with dementia’s of-the-moment experiential interests [26]. An extreme version is that experiential interests are the only interests that exist for the person with dementia and should therefore entirely supplant previously expressed critical interests as inputs in decision-making. A weaker version concludes only that experiential interests should weigh more heavily than critical interests [27]. On both the stronger and weaker accounts, the stated goal of end-of-life care for persons with dementia—and of dementia care more broadly—should be to enhance experiences rather than to advance critical interests.

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Finally, scholars favoring evolving critical interests views argue that both critical interests preserved and experiential interests paramount views problematically ignore the possibility that persons with dementia might still form or hold critical interests that can effectively guide decision-making [28]. Instead, they argue that people with dementia have an ongoing capacity to hold values relevant to end-of-­ life decision-making. Even if it is unlikely that persons with dementia can codify their values in legal documents, they should not be prevented from communicating preferences or even making value-based decisions about their care. This view makes room for alternative approaches to decision-making rather than defaulting to either critical interests or experiential interests as the primary (or sole) input.

5.3

 nd-of-Life Decision-Making by, with, E and for the Person with Dementia

Decision-making is a complex process in dementia care. People with dementia want to participate in decision-making about their care as long as possible, though they recognize that it will become more difficult with time. As dementia progresses, the role for surrogate decisionmakers enlarges. In this section, we consider various modes of decision-making in light of our discussion of autonomy, personal dignity, self-identity, and interests.

5.3.1 By the Person with Dementia It is well-established legally and ethically that individuals with capacity are empowered decision makers and should be given the opportunity to consent to what does (or does not) happen to them in accordance with their values and preferences. Capacity, which is assessed clinically, is the task-specific ability to understand, appreciate, and rationally manipulate information and to communicate a consistent decision [29]. Persons with dementia may retain capacity to make at least some decisions and cannot automatically be assumed to be incapable of making their own decisions on the basis of their diagnosis alone; thus, ongoing assessment of capacity is needed. Allowing persons with dementia who retain capacity to make decisions demonstrates respect for their autonomy and also has collateral benefits, such as preserving personal dignity, maintaining well-being, and preventing excess disability [30–32]. Capacity becomes increasingly compromised as dementia progresses [33–35]. Persons proactively anticipating their own loss of capacity—and with it the ability to give informed consent and to direct their own care—may leave instructions for how medical decisions, including those around end-of-life care, should be made. Such instructions often come in the form of an advance directive. The logic of advance directives is that by planning ahead, patients can get the medical care that they want, avoid treatment that they do not want, and relieve their family, friends, and clinicians of the burden of making decisions in moments of crisis or grief.

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Broadly, there are two kinds of health-care advance directives, though details vary by jurisdiction. A living will is a written statement of the patient’s personal desires regarding life-sustaining treatment and other care. A limitation of living wills is that they are rarely expansive enough to encompass the full range of end-of-life decision-­ making, so surrogate or clinician interpretation is almost always necessary. A healthcare power of attorney is a written document in which a patient appoints another person as a surrogate to make health-care decisions on her behalf. A combination of both a living will and a power of attorney is more comprehensive and more flexible than either instrument alone and is therefore generally viewed as the preferred legal tool for patients to express their health-care wishes. Some individuals also complete dementia advance directives, a practice which has attracted growing interest in the United States [36–38]. Whereas the standard advance directive is often focused on care for an imminently terminal condition and may be of limited utility for persons with dementia because it lacks specificity for dementia care [39, 40], the dementia advance directive reflects the gradually progressive nature of dementia. It covers many day-to-day choices that might be confronted, such as where the patient would like to receive care and who the preferred caregiver is, and may also allow individuals to indicate the particular stage of dementia at which certain treatments should be withheld [36, 37]. The legal force of dementia advance directives is an open question, but they may be used to supplement standard advance directives. In 2019, Nevada became the first US state to statutorily recognize the legitimacy of an advance directive that instructs caregivers to stop providing food and fluid by mouth, though individuals have already been completing similar advance directives in other states [41–43]. Roughly half of persons with dementia and closely related neurological diseases have completed a living will, healthcare power of attorney, or both [44, 45]. This is a higher rate of advance directive completion than for individuals with other serious and terminal illnesses and almost double that of the general population [44]. From this, one can reasonably infer that advance directives serve a significant purpose for persons with dementia. Yet, there is strong evidence suggesting that many patients do not want to control specific treatment choices but prefer to convey their unique values, interests, and preferences to surrogates [39, 46, 47]. In a study gauging whether dialysis patients would want to suspend treatment if they developed dementia and whether they would want an advance directive specifying such preferences followed, roughly equal proportions of patients wanted their advance directive strictly followed (39%), wanted total leeway for proxies and clinicians (31%), or wanted some degree of leeway for proxies and clinicians (30%) [46]. Advance directives should explicitly ask whether patients would like their preferences followed strictly or weighed against their best interests as a way to resolve the tension between critical and experiential interests [46–48]. A practical concern is that individuals drafting advance directives, and particularly dementia advance directives, confront an epistemic barrier that may compromise their autonomy: they cannot know whether their future experience of dementia

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will or will not constitute a life worth living [49]. They only have access to experiential predictions and may therefore misimagine what it would be like to have dementia. Particularly concerning, beliefs about dementia are generally informed by deep social stigma and sweeping negative conceptions of a complex neurodegenerative disease that do not account for the diverse experiences of persons with dementia [49]. Individuals may also underestimate their own ability to adapt hedonically to changes in their cognition and function [12]. A somewhat more philosophical concern is that advance directives are useful guides for decision-making only insofar as it is reasonable to consider future states that are in fact yours. Narrative views of identity favor advance directives because they posit that one’s narrative self extends into the future. Because previously formed critical interests persist even in the face of cognitive decline, following an advance directive demonstrates respect for the person who wrote it [25, 50]. This position—following a previously written advance directive—is generally consistent with current law and clinical practice but may be in tension with many older adults’ preference, discussed above, to allow surrogates at least some leeway in decision-­ making [39, 46, 47]. Psychological continuity views of identity, in contrast with narrative views, challenge the primacy of tools such as advance directives that are intended to extend one’s preferences into the future [24, 50], as these documents are generally activated by a major life change of the kind that could be constitutive of a new identity. Those who view experiential interests as paramount also reject the supremacy of advance directives. Advance directives, they argue, unjustifiably favor critical interests and precedent consent over experiential interests and contemporaneous consent; it may, therefore, be appropriate to override advance directives in favor of the patient’s experiential interests [51, 52]. This view flips the traditional hierarchy of medical decision-making for persons lacking decision-making capacity—which privileges previously expressed wishes over other decision-making heuristics—on its head. We favor a compromise position in which there is a rebuttable presumption that the preferences outlined in an advance directive hold. An individual with diminished capacity may be able to affirm past decisions if the standard for affirming an advance directive is lower than the standard for authoring the advance directive in the first instance. Such “persistent consent” can buttress preferences expressed in an advance directive. Persistent consent requires that an individual has an advance directive stating a preference and also that she continues to affirm that preference in the present moment [29, 53, 54]. Assent is discussed briefly below. This approach allows individuals to preplan for their own dementia care, which can itself be an important exercise of autonomy. But it also offers a compelling way of balancing critical and experiential interests and advancing personal dignity as a goal of care. We acknowledge there may be limitations to this approach—for instance, in advanced dementia, though dissent may be an option. Nevertheless, this hybrid approach leads naturally to a discussion of approaches to decision-making that include the person with dementia.

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5.3.2 With the Person with Dementia Many persons with dementia maintain a strong desire to be involved in decisions that directly affect their lives [31]. Thus, maximizing their involvement in decision-­ making is increasingly recognized as an ethical priority. Achieving this will require identifying tools that can adequately balance the duty to respect individuals’ capacity for self-determination with the duty to protect the welfare of those with diminished autonomy. Supported decision-making is one such tool. Supported decision-making is a model of decision-making in which an adult with diminished capacity (a “beneficiary”) enters into an agreement with a closely trusted person or network of persons (“supporter(s)”) to obtain assistance in exercising self-determination [55].The process for implementing supported decision-making for persons with dementia would include identifying the domains of life in which support is needed and desired, such as end-of-life care; identifying the kinds of support that are needed and desired; and formalizing a supported decision-making agreement. Though there is no single model of supported decision-making, all models share as a core feature that the beneficiary retains the right to make decisions and have them recognized by law [56, 57]. The supporter does not substitute his own judgment for the beneficiary’s. Instead, the supporter’s cognitive capacities supplement the beneficiary’s impaired capacities. In explaining supported decision-making, many theorists rely on the extended mind thesis, which holds that mental features—including beliefs, memories, and desires—can “be constituted partly by features of the environment, when those features play the right sort of role in driving cognitive processes” [58, p.  12]. For instance, a person with impairments in memory might use written lists or reminders to bolster her memory. Analogously, her supporter might join her for medical appointments, asking pertinent questions of the clinician, taking notes, and reviewing this information with the beneficiary to help her reach a decision. The support inherent to supported decision-making is understood to promote rather than undermine the beneficiary’s autonomy. Because supported decision-making balances respect for autonomy and protection for vulnerable individuals, there is growing interest in and commitment to it among US courts, state legislatures, legal practitioners, and disability advocates. It is also being utilized internationally, spurred by the language of the U.N. Convention on the Rights of Persons with Disabilities Article 12 [59, 60]. Yet, open questions remain such as: under what conditions should a transition to a substituted decision-making regime occur? And who decides when to execute this transition? [61]. It may also be possible to involve persons with dementia in decision-making via strategies short of consent. Capacity can be thought of as binary: an individual has the capacity to grant informed consent in a particular instance, or he does not. Yet, this binary should not obscure the fact that the components of capacity—understanding, appreciation, reasoning, and choice—are assessed along a continuum. Persons

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who lack capacity may nonetheless maintain one or more of these abilities to a meaningful extent. The ethical consequences of this are significant. There may be strategies short of seeking consent that can be used to respect the autonomy of persons with dementia, such as listening to their assent or dissent. The goal of assent is to ensure that the person with dementia is comfortable with a particular decision; it generally requires at least a minimal level of understanding and the ability to evidence a choice. Typically, assent is not considered sufficient to authorize a decision without consent from an appropriate surrogate. Dissent, whether verbal or nonverbal, is an objection. Unfortunately, while intuitively appealing, the concepts of assent and dissent have not been clearly operationalized, leaving challenges for surrogates and clinicians who might wish to apply them in the context of end-of-life care [62].

5.3.3 For the Person with Dementia Surrogates often need to make end-of-life decisions for a person with dementia if clear plans were not made by the individual prior to his or her decline [5]. As discussed above, even when there is a healthcare advance directive to guide decision-­ making, surrogates may need (or be asked) to interpret a person with dementia’s stated end-of-life preferences in order to reach final decisions, or the person with dementia may have granted the surrogate leeway when making decisions. There are two general approaches to surrogate decision-making in the absence of explicit directions. First, the surrogate might apply the substituted judgment standard. Under this standard, the surrogate is tasked with using any evidence of the patient’s values, preferences, and interests to reach the decision the patient would have made for herself, had she retained capacity and been confronted with the same circumstances. Though the person with dementia cannot make decisions for herself, the reasoning goes, others can respect her autonomy by approximating her autonomous decisions. The substituted judgment standard is considered well suited to decision-making for individuals who previously had capacity because there is extant evidence of their personal values, critical interests, and preferences for surrogates to utilize. Second, the surrogate might apply a best interests standard, which considers what would be good for the person with dementia. Best interests answers the question “what would a reasonable person want in this context?” rather than the question “what would this particular person want in this context?” [63]. The best interests standard is typically used when information about the individual’s specific preferences is lacking, as for example, when decisions need to be made for minors or for individuals who were never competent. The ethical justification for best interests is best understood as depending on the principle of beneficence rather than the principle of autonomy. In law and in ethics, substituted judgment is often thought to be preferable to best interests when making decisions for formerly competent individuals because of the primacy given to autonomy. There have, however, been challenges to this ordering [27]. In

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persons with dementia, experiential and critical interests may pull apart. For example, an individual who previously expressed a desire to avoid the indignity of dementia may now enjoy sitting in the sunshine. How should we reconcile prior wishes with apparent happiness in the present? As outlined above, theorists have advanced competing accounts of how critical and experiential interests should be balanced. If one favors weighing experiential interests heavily in decision-making, substituted judgment— which generally privileges critical interests—is not inherently superior to best interests. It has been argued that it is necessary for surrogates to focus on the person with dementia’s whole self, using “practical wisdom and creative judgment” to reconcile critical and experiential interests, rather than inappropriately simplifying a complex situation and favoring one over the other [20]. Empirical evidence also suggests that the priority given to substituted judgment may be inappropriate. When asked to make choices about hypothetical end-of-life scenarios, persons with dementia and their relatives only achieve low-to-moderate agreement in their decisions [64]. This implies that substituted judgment—the idea that we can approximate another’s autonomous decisions—may work better in theory than in practice. Further, studies show that surrogates often use best interests rather than substituted judgment [65]. They eschew expressed or stated preferences for many reasons, most prominently that they do not want to feel guilty for the patient’s death [40]. This discomfort is also instructive in the end-of-life setting.

5.4

Caregiver Needs

Throughout this chapter, we have talked about the important role for surrogate decisionmakers when directing the end of life in dementia. Multiple studies have documented high levels of assistance provided by informal caregivers at the end of life and their considerable influence on end-of-life care [66–69]. Individuals with dementia value family-member involvement, identifying it as an important conceptual dimension of what constitutes a good death. Unfortunately, studies have also consistently shown that over one-third of surrogates involved in end-of-life decision-­ making experience negative emotions such as anxiety, stress, and burden, with many fewer reporting positive emotions such as satisfaction [70, 71]. In qualitative work, surrogates describe decisions to forgo lifesaving or life-extending treatment as “overwhelming,” “devastating,” and “traumatic” [70]. Many surrogates do not feel competent to make life-and-death decisions [72]. It is, perhaps, unsurprising then that a substantial portion of surrogate decisionmakers experience persistent emotional burden as a result of making or executing end-of-life decisions for incompetent patients. Surrogates for persons with dementia indicate a desire for health-care providers to encourage and facilitate advance care planning and report that the relationship with health-care providers is vitally important to the end-of-life care experience [40, 47, 65]. Any advancements in decision-making strategies at the end-of-life in dementia must consider the needs of surrogates as well as of the persons with dementia entrusted to their care.

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Interventions at the End of Life

Thus far, we have considered end-of-life decision-making largely in the abstract; yet, directing the end of life in dementia necessarily requires specific decisions. In this section, we will discuss a range of options that persons with dementia may consider to hasten death. While end-of-life care may follow numerous trajectories, we have chosen to focus on these options because dementia is one of the most feared conditions of old age. It is often decried as a fate worse than death because of its association with a loss of personal dignity and self-identity [73]. Many individuals feel that if they enter such a state, they would not want their life prolonged [27]. In a study of dementia caregivers, more than 90% indicated a belief that death came as a relief to the patient, and 72% reported feeling relief themselves [74]. Thus, interventions that would allow people with dementia—or their surrogates—a measure of control over the timing of death merit our attention here. We consider these life-limiting decisions in light of the legal and ethical frameworks identified above while noting that many similar points may hold if a patient’s preference is to extend life as long as possible. Stated otherwise, the tension between critical and experiential interests for an individual who previously expressed that she would like every possible intervention to extend life, yet appears highly distraught, agitated, and depressed in the present, is similar to the tension for an individual who stated a desire to refuse all lifesaving inventions but now appears content as her dementia progresses.

5.5.1 Withholding or Withdrawing Care Death may be hastened by refusing or withdrawing life-sustaining treatments. Clinicians may, for example, be instructed to withhold antibiotics for infections, treatment for comorbidities, or cardiopulmonary resuscitation (CPR) in the event a patient experiences cardiac arrest. It is relatively uncontroversial that individuals who wish to avoid living into severe, late-stage dementia can refuse the initiation of lifesaving treatment such as this [52, 75]. Yet, it has been noted that refusing life-­ sustaining treatments leaves the time and circumstances of death largely to chance. There is growing interest in voluntarily stopping eating and drinking (VSED), which offers patients with dementia greater control over death by directly linking it to a definite stage of cognitive and physical decline rather than leaving it to a chance event, such as developing pneumonia (that will then go untreated). Individuals with late-stage dementia often require caretakers or clinicians to perform hand feeding. At present, refusing artificial nutrition and hydration is the most common directive in the living wills of persons with dementia [76]. It will likely become a more common request as dementia advance directives gain wider legal recognition, though many states presently prohibit the withdrawal of assisted feeding from incapacitated individuals. Some scholars argue that—when there is an “underlying pathological condition” preventing eating and drinking (e.g., difficulty swallowing) [75]—VSED

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is comparable to forgoing intrusive medical interventions [37, 53, 75]. On this view, withholding nutrition and hydration when persons with dementia stop requesting or begin refusing food and water is theoretically indistinguishable from refusing the surgical insertion of a feeding tube [53, 75]. The persistent consent view, discussed above, supports the claim that an individual who requests VSED in an advance directive and continues to refuse food and water should be able to refuse treatment and not be force-fed [38, 50, 53]. Some scholars take a more extreme view, arguing that individuals should be able to refuse handfeeding at any stage of dementia [77]. This extreme view has prompted extensive debate. Detractors argue that feeding is basic comfort care that should not be denied [52, 78]. They focus on the obligation that caretakers and clinicians have to support the basic human dignity, rather than personal dignity, of persons with dementia by providing necessities and comforts through the life course.

5.5.2 Medical Aid-in-Dying Some individuals with dementia desire medical aid-in-dying, a term that encompasses both physician-assisted dying and euthanasia [79]. Fear of loss of autonomy is a leading reason for requesting medical aid-in-dying [80, 81]. Medical aid-in-­ dying laws vary significantly by jurisdiction. In physician-assisted dying (PAD), the physician provides the means for death—usually a lethal prescription—but the patient self-administers it. Nearly a quarter of the US population now lives in a state where PAD is legal. Under current laws, however, persons with dementia are not eligible for PAD because eligibility requires both capacity to give contemporaneous consent and also a terminal diagnosis. There are, however, nascent efforts in the United States to make PAD available to individuals with neurodegenerative diseases, including Alzheimer’s disease, the leading cause of dementia [63, 64]. In euthanasia, by contrast, the physician acts directly—for instance by administering a lethal injection—to end the patient’s life. Euthanasia is illegal throughout the United States. In other countries, medical aid-in-dying is available to patients with dementia and has become more common in recent years [82], though it remains controversial [83, 84]. Going forward, insights from abroad may inform medical aid-in-dying debates in the United States. Many scholars and physicians worry that legally permitting physicians to cause a patient’s death—through PAD or euthanasia—is contrary to professional norms and may seriously undermine the trusting relationship between patients and physicians [85]. Moreover, critics argue that any experiential interest in medical aid-in-dying (e.g., suffering) results from a failure to provide support for well-being and is therefore preventable. But some arguments are specific to dementia. Critics argue that extending medical aid-in-dying to persons with dementia is a disincentive to necessary social change. On this disability perspective, those who form a critical interest in avoiding dementia through medical aid-in-­ dying are responding to an unjust social reality and failure of society to adequately

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protect the interests of persons with dementia [27, 51]. By allowing euthanasia for dementia, society problematically shifts responsibility to the individual rather than fulfilling its ethical obligations to persons with dementia. Yet, even proponents of this view generally concede that—if end-of-life care advances to a point where death is not resignation from unbearable institutionalization, familial burden, or social stigma, but rather a response to personal critical interests—“eventually the decision to die will be morally defensible” [26, p. 38]. What background conditions would suffice to make the decision to access medical aid-in-dying an act of autonomy rather than resignation from a difficult reality? This question should be the basis of further ethical exploration to guide policy. For many individuals, the prospect of living with dementia may prove “stunningly inadequate to the conception of self around which their own lives have so far been constructed” [9, p.  211]. These are critical rather than experiential interests, as they pertain to the overall values and goals of a life well lived [80, 86]. Once again, we confront the question of how best to balance critical and experiential interests when they are in tension.

5.5.3 Suicide Reported rates of suicide in dementia vary widely and reach as high as 11% [67– 70]. People with mild cognitive impairment and early dementia are at increased risk for suicidal behavior, often in the context of comorbid depression. While the executive dysfunction characteristic of later-stage dementia may diminish the individual’s ability to commit suicide, early-stage dementia may present unique suicidal risk due to a combination of insight into declining cognition with sufficiently intact abilities to complete the act of suicide [87–89]. Preemptive suicide, following a dementia diagnosis but prior to the onset of debilitating cognitive decline, may seem like the only option for persons with dementia, particularly if medical aid-in-dying is not available to them. There has long been controversy around “rational suicide” and whether it is an appropriate response to the prospect of cognitive and functional decline [90–93]. We will not rehash that debate here. We note, however, that as with medical aid-in-dying, some see suicide as an exercise of autonomy while others worry that acknowledging suicide as a rational response to dementia may create pressure on individuals to avoid dementia by ending their own lives rather than pressuring society to fulfill its obligation to care for people with dementia with dignity.

5.6

Conclusion

Decision-making is critical to directing the end of life in dementia. Significant debate persists around how best to make care-related decisions for persons with dementia, including how to promote participation of persons with dementia in decision-­making and how to weigh their competing interests. Our answers to these

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questions will depend, in part, on how we understand autonomy, personal dignity, self-identity, and interests in dementia. As debates continue, it is crucial to develop a coherent, balanced framework that allows patients, families, clinicians, and the state to make sense of the preferences and respond to the needs of persons with dementia and those who care for them.

References 1. The epidemiology and impact of dementia: current state and future trends [Internet]. World Health Organization; [cited 2019 Aug 11]. http://www.who.int/mental_health/neurology/ dementia/en/. 2. Alzheimer’s Association. 2019 Alzheimer’s disease facts and figures. Alzheimers Dement. 2019;15(3):321–87. 3. Blasi ZV, Hurley AC, Volicer L. End-of-life care in dementia: a review of problems, prospects, and solutions in practice. J Am Med Dir Assoc. 2002;3(2):57–65. 4. Dening KH, Greenish W, Jones L, Mandal U, Sampson EL. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Support Palliat Care. 2012;2(2):103–7. 5. Mitchell SL. Care of patients with advanced dementia [Internet]. In: Morrison RS, Yaffe K, Wilterdink JL, editors. UpToDate. Wolters Kluwer. 2019. https://www.uptodate.com/contents/ care-­of-­patients-­with-­advanced-­dementia#H423254540. 6. McCarthy M, Addington-Hall J, Altmann D. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry. 1997;12(3):404–9. 7. Aminoff BZ, Adunsky A. Dying dementia patients: too much suffering, too little palliation. Am J Hosp Palliat Med. 2005;22(5):344–8. 8. Childress JF. The place of autonomy in bioethics. Hast Cent Rep. 1990;20(1):12–7. 9. Dworkin R. Life’s dominion: an argument about abortion, euthanasia, and individual freedom. New York: Knopf; 1993. 10. Christman J, Anderson J. Introduction. In: Autonomy and the challenges of liberalism: new essays. Cambridge: Cambridge University Press; 2005. p. 1–23. 11. Buss S, Westlund A.  Personal autonomy. In: Zalta EM, editor. Stanford encyclopedia of philosophy. Stanford: Metaphysics Research Lab, Center for the Study of Language and Information; 2018. 12. Ubel PA, Loewenstein G, Schwartz N, Smith D. Misimagining the unimaginable: the disability paradox and health care decision making. Health Psychol. 2005;24(4 Suppl):S57–62. 13. Christman J.  Relational autonomy and the social dynamics of paternalism. Ethical Theory Moral Pract. 2014;17:369–82. 14. Specker Sullivan L, Niker F.  Relational autonomy, paternalism, and maternalism. Ethical Theory Moral Pract. 2018;21:649–67. 15. Mackenzie C, Stoljar N. Introduction: autonomy refigured. In: Relational autonomy: feminist perspectives on autonomy, agency, and the social self. Oxford: Oxford University Press; 2000. 16. Kant I, Gregor MJ. Groundwork of the metaphysics of morals. Cambridge, U.K: Cambridge University Press. 1998. 17. Pullman D. Death, dignity, and moral nonsense. J Palliat Care. 2004;20(3):171–8. 18. van Gennip IE, Pasman HRW, Oosterveld-Vlug MG, Willems DL, Onwuteaka-Philipsen BD. How dementia affects personal dignity: a qualitative study on the perspective of individuals with mild to moderate dementia. J Gerontol Ser B. 2016;71(3):491–501. 19. Tranvåg O, Petersen KA, Nåden D. Relational interactions preserving dignity experience: perceptions of persons living with dementia. Nurs Ethics. 2015;22(5):577–93. 20. Koppelman ER. Dementia and dignity: towards a new method of surrogate decision making. J Med Philos. 2002;27(1):65–85.

5  Directing the End of Life in Dementia

87

21. Shoemaker D.  Personal identity and ethics. In: Zalta EM, editor. Stanford encyclopedia of philosophy. Stanford: Metaphysics Research Lab, Center for the Study of Language and Information; 2015. 22. Olson ET. Was I ever a fetus? Philos Phenomenol Res. 1997;57(1):95–110. 23. DeGrazia D.  Advance Directives, dementia, and “the someone else problem”. Bioethics. 1999;13(5):373. 24. Parfit D. Reasons and persons. Oxford: Oxford University Press; 1984. 25. Davis DS. Alzheimer’s disease and pre-emptive suicide. J Med Ethics. 2014;40(8):543–9. 26. Dresser R. Dworkin on dementia: elegant theory, questionable policy. 1995;25:32–8. 27. Dresser R, Robertson JA. Quality of life and non-treatment decisions for incompetent patients: critique of the orthodox approach. Law Med Health Care. 1989;17(3):234–44. 28. Jaworska A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philos Public Aff. 1999;28(2):105–38. 29. Francis LP. Decisionmaking at the end of life: patients with Alzheimer’s or other dementias. Georg Law Rev. 2001;35(539):539–92. 30. Smebye KL, Kirkevold M, Engedal K.  How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Serv Res. 2012;12:241. 31. Hirschman KB, Joyce C, James B, Xie S, Karlawish JHT.  Do Alzheimer’s disease patients want to participate in a treatment decision, and would their caregivers let them? Gerontologist. 2005;45(3):381–8. 32. Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: a review of patient and family carer involvement. Dementia. 2016;15(5):1141–57. 33. Karlawish JHT, Casarett D, James B, Xie S, Kim S. The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment. Neurology. 2005;64(9):1514–9. 34. Hirschman KB, Xie SX, Feudtner C, Karlawish JHT.  How does an Alzheimer’s disease patient’s role in medical decision making change over time? J Geriatr Psychiatry Neurol. 2004;17(2):55–60. 35. Marson DC, Ingram KK, Cody HA, Harrel LE. Assessing the competency of patients with Alzheimer’s disease under different legal standards. Arch Neurol. 1995;52:949–54. 36. Gaster B, Larson EB, Curtis JR. Advance directives for dementia: meeting a unique challenge. JAMA. 2017;318(22):2175–6. 37. Steinbock B, Menzel PT. Advance directives for refusing life-sustaining treatment in dementia. Hastings Cent Rep. 2018;48(3 Suppl):S75–S79. https://doi.org/10.1002/hast.919. PMID: 30311234. 38. Quill TE, Ganzini L, Truog R, Pope TM.  Voluntarily stopping eating and drinking among patients with serious advanced illness—clinical, ethical, and legal aspects. JAMA Intern Med. 2018;178(1):123–7. 39. Black BS, Fogarty LA, Phillips H, Finucane T, Loreck DL, Baker A, et al. Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. J Aging Health. 2009;21(4):627–50. 40. Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, et  al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: a systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019;33(3):274–90. 41. Nevada Senate Bill (SB121) (2019). https://legiscan.com/NV/bill/SB121/2019. 42. Volicer L, Pope TM, Steinberg KE, Terman SA.  Response to resolution A19 regard ing “stopping eating and drinking by advance directives”. J Am Med Dir Assoc. 2019;S1525-8610(19)30369-X. https://doi.org/10.1016/j.jamda.2019.04.010. Epub ahead of print. PMID: 31160261. 43. Aleccia J. ‘Aggressive’ new advance directive would let dementia patients refuse food. Kaiser Health News [Internet]; 3 March 2018. https://khn.org/news/ aggressive-­new-­advance-­directive-­would-­let-­dementia-­patients-­refuse-­food/. 44. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, et  al. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff. 2017;36(7):1244–51.

88

K. C. Dildy and E. A. Largent

45. Lingler JH, Hirschman KB, Garand L, Dew MA, Becker JT, Schulz R, et  al. Frequency and correlates of advance planning among cognitively impaired older adults. Am J Geriatr Psychiatry. 2008;16(8):643–9. 46. Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992;267(1):59–63. 47. Hawkins NA, Ditto PH, Danks JH. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005;45(1):107–17. 48. Davis J.  Precendent autonomy and subsequent consent. Ethical Theory Moral Pract. 2004;7:267–91. 49. Wilson TD, Gilbert DT. Affective forecasting. Adv Exp Soc Psychol. 2003;35:345–411. 50. Menzel PT, Steinbock B. Advanced directives, dementia, and physician-assisted death. J Law Med Ethics. 2013;41:484–500. 51. Dresser R. Pre-emptive suicide, precedent autonomy and preclinical Alzheimer disease. J Med Ethics. 2014;40:550–1. 52. Dresser R. Dementia, dignity, and physician-assisted death. (Chapter 7, p. 105–121) in Muders, S. (Ed.). Human dignity and assisted death. Oxford University Press. 2017. 53. Menzel PT, Chandler-Cramer C.  Advance directives, dementia, and withholding food and water by mouth. Hast Cent Rep. 2014;44(3):23–37. 54. Battin MP. Euthanansia and physician-assisted suicide. (Chapter 26, p. 673–704) in: LaFollette H, editor. The Oxford handbook of practical ethics. 2003. 55. Kohn NA, Blumenthal JA, Campbell AT. Supported decision-making: a viable alternative to guardianship? Penn State Law Rev. 2013;117(4):1111–58. 56. Theodorou EJ.  Supported decision-making in the lone-stars state. N Y Univ Law Rev. 2018;93(4):973–1013. 57. Silvers A, Francis LP. An Americans with Disabilities Act for everyone, and for the ages as well. Cardozo Law Review. 39(2017–2018):669–7. 58. Clark A, Chalmers D. The extended mind. Analysis. 1998;58(1):7–19. 59. Allen Z, Pogach D.  More states pass supported decision-making agreement Laws. Bifocal. 2019;41(1):161. 60. ABA urges supported decision making as less-restrictive alternative to guardianship. Bifocal. 38(6):95–6. 61. Largent EA, Peterson A. Supported decision making in the United States and abroad. J Health Care Law Policy. 2020;forthcoming. 62. Black BS, Rabins PV, Sugarman J, Karlawish JH. Seeking assent and respecting dissent in dementia research. Am J Geriatr Psychiatry. 2010;18(1):77–85. 63. Berg JW, Appelbaum PS, Lidz CW, Parker LS.  The legal theory of informed consent. In: Informed consent: legal theory and clinical practice. Oxford: Oxford University Press; 2001. p. 112–6. 64. Dening KH, King M, Jones L, Vickestaff V, Sampson EL. Advance care planning in dementia: do family Carers know the treatment preferences of people with early dementia? PLoS One. 2016;11(7):e0159056. 65. Hirschman KB, Kapo JM, Karlawish JHT. Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry. 2006;14(8):659–7. 66. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding the economic and other burdens of terminal illness for patients and their caregivers. Ann Intern Med. 2000;349(20):451. 67. Wolff J, Sydney M, Frick K.  Findings from a national survey of informal caregivers. Arch Intern Med. 2007;167(1):40–6. 68. Singer P, Martin D, Kelner M.  Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2):163–8. 69. Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J.  Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.

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70. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–46. 71. Sveen CA, Fredrik AW.  Suicide survivors’ mental health and grief reactions: A systematic review of controlled studies. Suicide Life Threat Behav. 2008;38(1):13–29. 72. Caron CD, Griffith J, Arcand M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long-term-care settings. J Appl Gerontol. 2005;24(3):231–47. 73. Rubin EB, Buehler AE, Halpern SD. States worse than death among hospitalized patients with serious illnesses. JAMA Intern Med. 2016;176(10):1557–9. 74. Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003;349:1936–42. 75. Sulmasy D. The ethics of medically assisted nutrition and hydration at the end of life: separating the wheat from the chaff. In: Youngner SJ, Arnold RM, editors. The Oxford handbook of ethics at the end of life. New York: Oxford University Press; 2016. 76. Triplett P, Black BS, Phillips H, Richardson Fahrendorf S, Schwartz J, Angelino AF, et  al. Content of advance directives for individuals with advanced dementia. J Aging Health. 2008;20(5):583–96. 77. Cantor NL. On avoiding deep dementia. Hastings Cent Rep. 2018;48(4):15–24. 78. Chuang E, Flicker LS. When voluntary stopping of eating and drinking in advanced dementia is no longer voluntary. Hastings Cent Rep. 2018;48(4):24–5. 79. Gert B, Culver CM. Distinguishing between active and passive euthanasia. Clin Geriatr Med. 1986;2(1):29–36. 80. Chin AE, Hedberg K, Higginson GK, Fleming DW. Legalized physician-assisted suicide in Oregon--the first year’s experience. N Engl J Med. 1999;340:57–583. 81. Largent EA, Terrasse M, Harkins K, Sisti DA, Sankar P, Karlawish JHT.  Attitudes toward physician-­assisted death from individuals who learn they have an Alzheimer disease biomarker. JAMA Neurol. 2019;76(7):864–6. 82. van der Heide A, van Delden JJM, Onwuteaka-Philipsen BD.  End-of-life decisions in the Netherlands over 25 years. N Engl J Med. 2017;377(5):492–4. 83. de Bellaigue C. Death on demand: has euthanasia gone too far? The Guardian; 18 Jan 2019. 84. de Boer ME, Droes R-M, Jonker C, Eefsting JA, Hertogh CMPM.  Advance directives for euthanasia in dementia: do law-based opportunities lead to more euthanasia? Health Policy. 2010;98:256–62. 85. Sulmasy LS, Mueller PS. Ethics and the legalization of physician-assisted suicide: an American College of Physicians position paper. Ann Intern Med. 2017;167(8):576–8. 86. Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ, van der Wal G, van der Maas PJ. Refused and granted requests for euthanasia and assisted suicide in the Netherlands: interview study and structured questionnaire. Br Med J. 2000;321(7265):865–6. 87. Lim W, Rubin E, Coats M, Morris J. Early-stage Alzheimer disease represents increased suicidal risk in relation to later stages. Alzheimer Dis Assoc Disord. 2005;19(4):214–9. 88. Draper B, Peisah C, Snowdon J, Brodaty H. Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimers Dement. 2010;6(1):75–82. 89. Draper B.  Suicidal behavior and assisted suicide in dementia. Int Psychogeriatr. 2015;27(10):1601–11. 90. Balasubramaniam M.  Rational suicide in elderly adults: a clinician’s perspective. JAGS. 2018;66(5):998–1001. 91. Bailey M. In secret, seniors discuss ‘rational suicide.’ Kaiser Health News; 25 June 2019. 92. Brandt RB. The rationality of suicide. In: Battin MP, Mayo DJ, editors. Suicide: the philosophical issues. New York: St. Martin’s Press; 1980. 93. Mayo DJ. The concept of rational suicide. J Med Philos. 1986;11(2):143–55.

6

Diagnosis Threat Related to Disclosure of Alzheimer Disease Biomarkers and a Discussion of the Ethics in Clinical and Research Settings Thomas J. Farrer and Sarah E. Cook

Contents 6.1  I ntroduction 6.2  A  dvances in Dementia Diagnosis 6.2.1  Reasons Why People Choose to Know or Not Know Their Risk 6.3  Diagnosis Threat 6.3.1  Early Conceptualizations of Diagnosis Threat in Other Populations 6.3.2  Diagnosis Threat Related to Family History of AD 6.3.3  Diagnosis Threat Related to Aging Stereotypes in Healthy Older Adults 6.3.4  Diagnosis Threat Related to Biomarkers for Alzheimer’s Disease in Healthy Older Adults 6.3.5  Diagnosis Threat Related to Health Behaviors 6.4  Clinical Practice Standards 6.4.1  Ethics of Disclosure in Clinical and Research Settings 6.5  Conclusion References

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Abstract

Diagnosis threat occurs when individuals have a negative expectation of behaviors or symptoms associated with a proposed diagnosis. For example, a member of a group may change their behavior or cognitive functioning because they are aware that such changes are typically expected of individuals in that group. In dementia, people may experience diagnosis threat because they have a reasonable expectation of how behavior or cognitive functioning changes in these conditions. Studies on diagnosis threat have demonstrated that by simply knowing of an increased risk of dementia, people will display declines in cognitive function

T. J. Farrer (*) · S. E. Cook Duke University Medical Center, Durham, NC, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_6

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and will self-report more memory concerns. However, studies demonstrate that not all individuals with a risk of dementia will develop the clinical manifestation of the disease. With increased medical advances in genetics and neuroimaging, people have increasing access to knowledge about their genetic risks and vulnerabilities, and doctors sometimes reveal these vulnerabilities to asymptomatic patients. This chapter reviews the important aspects of diagnosis threat correlated with revealing the risk of dementia in an asymptomatic population and how disclosures in this population might cause diagnosis threat and impact psychological well-being. Additional discussion includes clinical and research practice standards for the appropriate and ethical use of genetic and neuroimaging data associated with dementia risk.

6.1

Introduction

Alzheimer’s disease (AD) and other forms of dementia are already thought of as being significant public health concerns due to the current aging population. Additionally, the prevalence of dementia, particularly AD, is expected to increase threefold from current population estimates, with a projected 13.5 million cases in the United States alone by the year 2050 [1]. Early identification of individuals at risk of AD could have a significant impact on treatment and prevention strategies.

6.2

Advances in Dementia Diagnosis

Significant amounts of AD research have focused on identifying biomarkers of AD. In general, a biomarker is a measurable biological element that can serve as an indicator of health and disease. Borrowing an example from general medicine, elevated blood pressure measurements may be a biomarker of hypertension. A biomarker may also act as a harbinger of future diseases. Biomarkers are often gathered with lab work, imaging, biopsies, or genetic tests. In AD, biomarkers may include genetic markers, such as Apolipoprotein E (APOE; discussed below), proteins in the cerebrospinal fluid, and brain imaging. These markers have led to extensive research efforts because such markers may assist with early detection and diagnosis of AD, thus allowing for early treatment planning. The most advanced biomarker for AD is amyloid imaging, which has increased in use since 2012 when the U.S. Food and Drug Administration (FDA) approved florbetapir positron emission tomography (PET) amyloid imaging for the detection of amyloid plaques in the brain (signified as Aβ + when present to a certain degree).

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The use of amyloid PET imaging is shown to increase diagnostic sensitivity and accuracy among individuals with dementia [2], increase diagnostic confidence, and increase the likelihood of a change in diagnosis and treatment strategies based on PET results [3]. However, it is now well-established that individuals with AD may demonstrate biomarkers of the disease years, sometimes decades, before any clinical symptoms, such as cognitive and functional changes, manifest [4, 5]. This finding has been identified in the postmortem examinations of cognitively normal individuals who show appreciable numbers of amyloid plaques, which is suggestive of preclinical AD occurring in middle age [1]. Thus, we can conclude that amyloid imaging may also reveal a preclinical stage of disease even before symptoms manifest [6]. Using structural and functional neuroimaging, it has also been found that individuals with an Aβ + scan who are currently asymptomatic display neural changes similar to changes often seen in AD [7–10]. While the presence of Aβ is correlated with the eventual onset of cognitive deficits, 20–40% of cognitively intact elders display high tracer binding (i.e., show signs of amyloid) during amyloid PET imaging [11]. Studies examining clinical disease course indicate that there are subtle cognitive difficulties that can be detected years before an individual meets the criteria for mild cognitive impairment (Figs. 6.1 and 6.2; [1]). It is also clear from these clinical studies and postmortem examinations that some individuals with the pathophysiological markers of dementia may never become symptomatic and could be cognitively normal throughout old age. Regardless of the correlation between biomarkers and disease onset, it is worth considering the impact biomarker findings may have on cognitively normal adults who are made aware that they have biomarkers of AD, as well as whether or not this diagnosis induces a negative self-stereotype or negative expectation about cognitive health and well-being associated with biomarker risk (i.e., diagnosis threat).

Fig. 6.1 Operationalization of the preclinical stage of dementia [1]

The continuum of Alzheimer’s disease Cognitive function

Aging

Preclinical MCI

Dementia

Years

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Abnormal Amyloid-β accumulation (CSF/PET) Synaptic dysfunction (FDG-PET/fMRI) Tau-mediated neuronal injury (CSF) Brain structure (volumetric MRI) Cognition Clinical function

Normal

Preclinical

MCI

Dementia

Clinical Disease Stage

Fig. 6.2  Hypothetical representation of AD biomarkers and temporal occurrence in relation to onset of clinical manifestations of cognitive decline (MCI and Dementia; [1])

6.2.1 R  easons Why People Choose to Know or Not Know Their Risk With the increasing availability of consumer genetic testing, more and more people are seeking information about their genetic vulnerabilities. A survey study examined public attitudes about genetic testing for AD and demonstrated that 79% of respondents would be willing to take a hypothetical genetic test that predicted whether or not they would eventually develop AD.  The study demonstrated that the respondents would be willing to pay up to $320 to complete such a test [12]. Research on genetic testing in Alzheimer’s disease (AD) has examined the motivational state of individuals seeking this genetic information. Reasons to seek information about one’s own genetic risk of AD include motivations to arrange personal affairs and long-term care planning, to prepare family members for the possibility of illness, to be able to complete life goals earlier than planned, to identify treatment options, and to find relief in learning one’s status, particularly for an individual who is at low risk [13]. One study suggested that increased familiarity or knowledge of AD leads to an increased desire to have test results [14]. Similarly, an individual’s interest in knowing their amyloid PET imaging results may vary depending on the stage of the clinical presentation. For example, one study demonstrated that 100% of individuals who were already diagnosed with amnestic mild cognitive impairment (aMCI)— often a precursor to developing AD—wanted to know the results of their amyloid PET scan. Deciding whether or not to know such results can be a difficult decision

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for some patients or research participants. However, even when told there is no treatment advantage, no guaranteed link between amyloid and eventual clinical expression of dementia, or even when they know there may be emotional strain from having such information, most individuals with aMCI still choose to have the amyloid PET scan results [15]. Another study conducted a large group interview to determine what reasons people might have for obtaining the results of an amyloid PET scan, as opposed to opting out of such information. The two main reasons for opting out of knowing the results included (1) fear or anxiety around having AD and (2) the fact that there is currently no cure for AD or effective disease-modifying treatments [16].

6.3

Diagnosis Threat

6.3.1 E  arly Conceptualizations of Diagnosis Threat in Other Populations Diagnosis threat is based on the principle that people have certain expectations about an illness or disease (i.e., cognitive impairment in dementia), and when faced with a diagnosis, people may adopt the expected sick-role behaviors assumed to be associated with a disease [17]. Diagnosis threat is similar to the social psychology construct of stereotype threat, the idea that people may change their behaviors when stereotype expectations are brought to their attention. Social psychology studies demonstrate that stereotype threat impacts sex and racial achievement gaps in academic and vocational settings; when there is a high level of stereotype salience, people may change their behaviors to conform with those stereotypes, often in negative ways [18]. Some of the earlier clinical research on diagnosis threat has been conducted on populations of traumatic brain injury patients. In one such study, Suhr and Gunstad [17] examined the possible impact of diagnosis threat on individuals with mild traumatic brain injury (mTBI). Some individuals were assigned to a diagnosis threat group and were told that they were selected because of their injury history and that the nature of their injury was associated with cognitive deficits. Other individuals were assigned to a neutral group and were told that they were going to complete tests of cognitive functioning without being presented with any preconceived judgment of their abilities. Those in the diagnosis threat group performed more poorly than the neutral group did on measures of memory and intelligence, despite having similar injury histories. In a follow-up study, Suhr and Gunstad [19] further explored diagnosis threat while attempting to control for other factors known to influence test performance (i.e., depression, anxiety, and effort). Again, with a sample of mTBI patients, some were assigned to a neutral condition and some to a diagnosis threat condition. As with their 2002 study, these researchers found worse cognitive test performances in the diagnosis threat condition. It is interesting to note, however, that depression, anxiety, and testing effort failed to mediate the effects of diagnosis

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threat on cognitive test performance. In another study, Trontel and colleagues [20] examined the impact of diagnosis threat on academic self-efficacy (belief in one’s academic abilities) among 54 college students with self-reported mTBI. Using similar conditions as reported by Suhr and Gunstad [17], these authors found that diagnosis threat was related to lower academic self-efficacy.

6.3.2 Diagnosis Threat Related to Family History of AD Knowing a first-degree relative who has AD can negatively impact the subjective ratings of memory abilities in healthy adults [21]. Those who observed a family member with early-onset AD were more likely to display worry about memory, which correlates with objective memory performance [22]. These findings suggest that diagnosis threat may be associated with expectations of cognitive decline from family history alone. These diagnosis threat effects on cognitive functioning in older adults have been observed in several other similar works as well [23–25].

6.3.3 D  iagnosis Threat Related to Aging Stereotypes in Healthy Older Adults Such concerns about diagnosis threat do not even require knowledge of personal history or family history of cognitive impairment. For example, several studies have examined how expectations and stereotypes about aging affect self-efficacy beliefs, as well as actual test performance. An early study examined the impact of self-­stereotypes among older adults’ memory performances and whether diagnosis threat could be induced experimentally [26]. In this study, a negative self-stereotype was activated with phrases such as “Because of my age I am forgetful” and positive self-stereotypes were activated with phrases such as “Because of my age I have acquired wisdom.” The author hypothesized that priming subjects with a negative stereotype would result in the expression of a more negative self-appraisal of old age, a lower expectation of one’s memory ability, and worse memory performance on objective testing. Conversely, she also hypothesized that priming subjects with a more positive stereotype of aging would result in the expression of a more positive self-image of old age, a higher expectation of one’s memory abilities, and improved memory performance on objective testing. The results demonstrated that the direction of the stereotype priming indeed impacted objective memory performance regardless of the individual’s sex, level of education, mood factors, or age [26]. Similarly, Desrichard and Köpetz [27] conducted a two-part study demonstrating that memory self-efficacy, or one’s beliefs about their memory abilities, impacts memory performance. Specifically, when a memory test contained instructions that explicitly referred to the test as a memory test, older adults did more poorly than when the test was not explicitly referred to as a memory test. Secondly, this study also demonstrated that one’s expectation of performance was moderated by the task instructions: when instructions informed the participant explicitly that their memory

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was being tested, the participants expected to do worse. There is also evidence that the relationship between diagnosis threat and cognitive test performance is related to age such that the older an individual is, the higher the degree of negative expectation about memory [28]. In another novel design for assessing stereotype threat in healthy older adults, one study randomly assigned healthy older adults to either an aging stereotype threat condition or a reduced-threat condition [29]. The subsequent examination included brief cognitive screening tests which are commonly given in clinical settings. The tests demonstrated that an aging stereotype can significantly increase false-positive rates (i.e., misdiagnosis of cognitive impairment) and that far more people scored in the mild cognitive impairment range when in the stereotype threat condition relative to the reduced-threat condition. These findings are important because they demonstrate a negative effect on cognition from aging stereotypes, even in healthy, community-dwelling, older adults who initially had no concerns about their cognitive functioning. Similarly, in another design, Fresson and colleagues [30] divided a sample of cognitively normal older adults (age 59–70) into either a dementia-worry threat or non-threat condition and examined their performances on neuropsychological tests of attention, executive functioning, and memory. As expected, those with dementia-­ worry displayed significantly reduced executive functioning. Surprisingly, however, the groups did not differ on aspects of attention or memory.

6.3.4 D  iagnosis Threat Related to Biomarkers for Alzheimer’s Disease in Healthy Older Adults With regard to the impact of knowledge of biomarker risk of AD, Lineweaver and colleagues [31] examined individuals aged 52–89 who were either aware of their genetic risk of AD or who did not know their genetic risk, despite the risk being present and known to the authors. In this study, the authors specifically looked at Apolipoprotein E (APOE). This is a protein involved in the metabolism of lipids, and there are three alleles (i.e., variations): APOE*2, APOE*3, and APOE*4, also written as E2, E3, and E4. Everyone has some combination of these genetic markers, which occur in pairs of two. The possible combinations are 2/2, 2/3, 2/4, 3/3, 3/4, and 4/4. The most frequently occurring combination in the population is 3/3, which is found in roughly 60% of the population. The presence of the E4 allele is known to increase an individual’s risk of AD, and those with the 4/4 combination have the highest risk of AD in the general population [32]. In the Lineweaver study, all participants had genetic studies conducted, and the authors informed some participants of their genetic risk (APOE 4+ or APOE 4−) and withheld this information from others. All individuals were judged to be cognitively normal at baseline, and there were no differences in mental status across groups. Participants were compared on both subjective memory abilities and on objective neuropsychological test performance about 8 months after APOE status had been disclosed to the first group. The study revealed significant genotype-by-­disclosure

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interaction effects. Specifically, older individuals who were aware of their genetic risk (APOE 4+) subjectively rated their memory more negatively and had significantly reduced verbal memory test performance relative to individuals with the same genetic risk who were unaware of their APOE 4+ status. Conversely, participants who were aware that they were APOE 4− judged their memory as being better on subjective measures than the individuals who were unaware that they were APOE 4−, although these groups did not differ on objective memory tests. These findings indicate that disclosing genetic risk associated with AD to cognitively normal adults can have a negative consequence on their self-efficacy related to memory abilities, as well as impact objective memory test abilities. Interestingly though, a systematic review of the risks of disclosing APOE 4 status to research participants argues that a positive result has minimal impact on psychological well-being, at least when looking at ratings of anxiety and depression symptoms [33]. In another study—this time with amyloid imaging—Burns et al. [34] examined the effects of disclosing risk to a sample of cognitively normal older adults. The results of amyloid imaging demonstrated that 27 of the 97 individuals in the study had elevated amyloid presence. This study uniquely measured mood symptoms at baseline and across time after disclosing amyloid status to all cognitively normal older adults. It also demonstrated that there was minimal impact on emotional functioning, regardless of the amyloid imaging results. Similar to other studies, there was an effect on self-report measurements of stress, but these effects were related to baseline anxiety and depression levels. These authors concluded that there is minimal psychological impact from disclosing imaging results to individuals who are cognitively normal (i.e., asymptomatic) at the time of the scan (see also [35]). These findings also appear to extend to family members of those with AD. Specifically, Green et al. [36] disclosed APOE 4 status to healthy adult children of people with AD and demonstrated that regardless of APOE status, there were minimal impacts to mood, with no additional increase in anxiety or depression over a 1-year study period. These findings are surprising, as it appears that diagnosis threat has a negative impact on cognitive performance but not mood, suggesting that these two constructs are independent and differentially impacted by diagnosis threat. Additional research is needed to further elucidate the clinical implications of these findings and whether intervention targeting diagnosis threat could impact memory performance and cognitive self-efficacy.

6.3.5 Diagnosis Threat Related to Health Behaviors Knowledge about one’s genetic risk of AD is also known to have an impact on healthrelated behaviors. Individuals who are at increased risk of AD are far more likely to change health-related behaviors than individuals who learned that they were at lower risk [37, 38], providing behavioral evidence of diagnosis threat. Furthermore, individuals who learn that they were at increased genetic risk of AD are more likely to pursue long-term care insurance (5.76 times more likely). Individuals with an increased risk of AD are also more likely to begin activities that are associated with

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reducing the risk of AD development, such as changing their diet, supplementing their vitamin E intake, or increasing their physical activity. In fact, participants in the studies that developed these findings were still more likely to have health-related behavioral changes to reduce their own risk, even after being told by examiners that no behavior was proven to prevent AD [37]. Conversely, results of a small survey indicate that people who receive a negative amyloid scan reported being less likely to make behavioral changes than they would have done if they had an elevated or positive result [39]. These findings suggest that diagnosis threat may have an impact on behavior, regardless of known effectiveness, and even among individuals who are asymptomatic at the time of evaluation.

6.4

Clinical Practice Standards

After a careful review of the relevant literature, it is clear that an individual’s risk of Alzheimer’s disease (AD) can be established in multiple ways. This may include a negative expectation based on family history, identification of genetic risk through testing, and identification of biomarkers related to preclinical AD with neuroimaging. However, little has been considered about the appropriate clinical use of this information in the identification and treatment of individuals concerned about cognitive health. A few consensus statements have been published, including one on appropriate use criteria for amyloid PET, which reports on multiple indications and contraindications for the use of amyloid PET imaging, according to the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association [40, 41]. According to this report, there are numerous contraindications for the use of Amyloid PET Imaging [40, 41]. Such imaging should not be conducted: • • • •

When a patient already meets the clinical criteria for probable AD dementia. To determine dementia severity due to a paucity of research on this matter. Solely based on family history or the presence of APOE 4 genotype. For patients with a cognitive complaint that is unconfirmed on clinical examination. • In lieu of genotyping for suspected autosomal mutation carriers. • For prognostic value in cognitively normal elderly individuals. • For use in nonclinical matters (i.e., legal matters, disability determination, or vocational ability). Other limitations regarding the adoption of widespread use of amyloid imaging include a lack of dementia experts that would be qualified to use amyloid imaging appropriately. Additionally, there remains a lack of educational resources for the appropriate use of this technique [41]. Further, this report cautions that prognostic judgments from amyloid imaging are not fully understood at this time, such that a negative scan does not exclude the development of AD in the future, and if proven preventative therapy is identified in the future, such contraindications would need to

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be reconsidered. Thus, the implementation of amyloid imaging in a greater number of settings is likely not feasible, and there are limited appropriate uses that have been identified at this time. Conversely, when there is a possibility that treatment planning can be altered significantly by knowing amyloid status, there is also a potential for possible appropriate use, particularly in those with amnestic mild cognitive impairment (aMCI), often considered a precursor to the development of AD. Another study on the disclosure of amyloid PET imaging results concluded that scan results could be revealed under two specific circumstances: (1) when results would be useful to people with aMCI, or (2) when results would ease distress among people who are amyloid-negative for AD pathophysiology [42]. Outside of these two instances, the authors discouraged the disclosure of amyloid PET imaging results. However, it appears that implementing these criteria clinically, using informed consent, would be tenuous because of the potential negative implications associated with those who would not receive disclosure. In other words, there would potentially be scenarios in which disclosing imaging results would be helpful but the patient elects to not receive the results. In this situation, is it ethical for a clinician to provide results against the patient’s wishes, even when the findings may reveal lower AD risk? Also, if a patient does not appear to understand the informed consent, it may be challenging for a clinician to know how to act when faced with disclosing amyloid results. Despite the consensus statement limiting the appropriate use of amyloid PET imaging, there appears to be an increasing interest in using biomarkers in clinical and research settings. In a small survey study of US neurologists who specialize in dementia, more than 83% of respondents indicated that they would plan to use amyloid imaging to evaluate patients for AD. Also, 77% indicated that they would use amyloid imaging as an adjunctive diagnostic measure or as a tool to rule out a diagnosis of AD. Additionally, roughly a quarter of the participants in this survey reported that they would use amyloid imaging to screen asymptomatic individuals [43]. In another survey, a majority of researchers (73%) supported the disclosure of amyloid PET imaging to research participants, and 58% endorsed disclosing the results to individuals with normal cognition [44]. As noted above, having negative results from amyloid imaging and then subsequently revealing these results to research participants may have unintended consequences as well. Specifically, individuals who present concerns about memory change and who subsequently have a negative amyloid PET scan may be left wondering why they continue to have memory problems, and they may walk away with more questions unanswered. Having a fundamental misunderstanding of the nature of dementia and risk of AD may lead these individuals to no longer have a sense of urgency about making plans for the future [45], especially given that a negative scan cannot exclude the possibility of future development of AD and that a negative amyloid scan does not rule out other forms of dementia or causes of cognitive decline. Thus, while a negative scan may be seen as an optimistic finding, the patient may feel frustrated about not having conclusive answers to why they have cognitive declines, despite imaging findings.

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6.4.1 Ethics of Disclosure in Clinical and Research Settings There are multiple codes of ethics that guide the behaviors of psychologists, medical physicians, and researchers, many of which have overlapping principles. We will discuss those germane to biomarker disclosure here. First, the main code of ethics for research is The Belmont Report [46]. The Belmont Report describes the basic ethical principles of human research identified by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report includes three main ethical principles: (1) Respect for Persons, (2) Beneficence, and (3) Justice, all of which are related to the ethics of revealing test results to research participants. The principle of Respect for Persons is centered on the idea that individuals should be treated as having autonomy and that individuals with diminished autonomy should be protected. Respect of an individual’s autonomy allows for the individual to have opinions and to make decisions based on their own judgment. The principle of Respect for Persons also suggests that research participants must have informed consent and must participate in research voluntarily, without coercion. It also recognizes that self-determination may be limited due to illness or cognitive impairment. In summary, the principle of Respect for Persons suggests that research participants must have informed consent about the cost and benefit of biomarker testing, including potential harm related to diagnosis threat, limitations to clinical application of results in a research setting, and their rights to know or rights to not know their test results. The principle of Beneficence is based on the idea that we should “do no harm” or that we should maximize benefit and minimize risks in clinical research. As we have discussed in this chapter, biomarker studies and labs may have important clinical and treatment implications. However, in the context of research, the individual participant may not be under the clinical care of a physician trained on how to utilize and interpret the biomarker in question. Additionally, we have seen in prior research that revealing a genetic risk to asymptomatic individuals may result in reduced cognitive function and a threat to their self-efficacy. We have also seen in the above literature review that there is a discrepancy between what researchers and clinicians report in surveys and what consensus statements suggest for revealing biomarkers to research participants. Specifically, it is commonly reported in surveys that researchers would be willing to reveal biomarker status to asymptomatic research participants despite consensus statements arguing against such disclosures. Again, the principle of Beneficence calls into question whether we are both maximizing benefit and minimizing harm in biomarker research. The third principle of research ethics in the Belmont report is Justice. The principle of Justice answers questions about fair distribution of the benefit and burden of research. In other words, if there is a benefit to research, there should be a fair distribution or fair availability of research outcomes. Additionally, one group should not be unduly burdened by research participation. As it pertains to disclosure of biomarkers, the principle of Justice may impact the ethics of who benefits from participation, and research studies should address how participants are recruited with equality and even representation of sex, race, and other factors.

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The clinical practice of a physician or psychologist is bound by certain ethical principles and standards, and patients also maintain certain rights in medical settings. The interface of these ethical principles guiding clinical practice and rights that patients have in receiving health care is highlighted in this section as it pertains to disclosure of biomarker results related to the risk of AD. The American Medical Association (AMA) Code of Ethics and the American Psychologist Association (APA) Code of Ethics both contain principles relevant to this chapter [47]. Specifically, the AMA code states that physicians shall provide competent medical services, respect the rights of patients, and protect privacy and confidentiality [47]. The APA ethics code provides guidance on principles of clinical practice, including the principles of (1) beneficence and nonmaleficence, (2) fidelity and responsibility, (3) integrity, (4) justice, and (5) respect for people’s rights and dignity [48]. It should be apparent that there is significant overlap between the ideals of the Belmont Report and the codes of ethics from the AMA and APA. Likely the most important issue at hand is that each patient has protected legal rights to know the results of tests and medical procedures, but they also have the right to not know such results. The right to know/not know one’s medical results is often thought to simply involve an individual decision on the part of the patient. However, a study examining the opinions of a focus group points out that these rights have an impact on family members and caregivers as well. Caregivers and family members may put pressure on the patient to receive results, often for multiple reasons, such as planning for the future and for medical decision-making. While not knowing can be difficult for family members who may observe cognitive decline before the patient does, knowing can also cause increased levels of stress on the family members [16]. Smedinga and colleagues [13] extensively reviewed the ethics of biomarker testing in AD—including genetic and amyloid imaging—and provided several arguments for and against the use of such biomarkers. They identified six main arguments in favor of the use of biomarker testing in AD research: • Results offer benefits for research practice, including expediting clinical trials and allowing for better identification of appropriate research participants. • Biomarker testing increases diagnostic certainty, reducing false positives and false negatives. • Biomarker testing enables people to make plans for the future more accurately, including personal goals and health-care planning. • Biomarker testing may improve an individual’s health and well-being through intervention and more successful therapeutic outcomes, as well as by encouraging the individual to start a healthier lifestyle. • Research participants and patients have the right to know and should be able to make the decision themselves (i.e., withholding the information is unethical because it takes the decision-making out of the hands of the participant). • Harmful consequences of biomarker testing may be overstated.

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On the other hand, Smedinga and colleagues also identified eight main arguments for not using biomarkers in AD research, some of which are similar to the clinical contraindications outlined above in respect to amyloid scans: • There is limited clinical utility to these biomarkers, given that there are no disease-­modifying treatments derived from them, and neuropsychological tests are more predictive of progression from mild cognitive impairment to dementia. • Some AD biomarkers are not currently validated, and standardized procedures are lacking. • A positive biomarker may lead to the medicalization of individuals who do not need medical care. For example, a positive biomarker test in a person who is asymptomatic or who may never ultimately develop a disease may subsequently receive unneeded treatments for that disease. • Disclosure of a positive biomarker test for Alzheimer’s disease can cause psychological harm due to stress and fear for the future. • Individuals with positive results could be harmed by stigma held by others under the assumption that these individuals have a disease that cannot be cured. • Principles of Justice indicate that there should be equal accessibility of biomarker testing, but not all biomarker testing is affordable for all patients. • Just as an individual may have the right to know the results of their biomarker testing, they have as much of a right not to know, which may mean that the tests should not be ordered against the patient’s wishes. • Acquiring biomarkers can in itself be burdensome and invasive; for example, some tests require a lumbar puncture or the use of radioactive ligands in imaging procedures. Although these eight arguments include aspects of clinical decision-making, the main argument against disclosure is the principle of nonmaleficence, with questions arising about potential harm to the patient or violation of patient rights [49]. Disclosure of risk of Alzheimer’s disease from biomarkers can be stressful for the research participant or patient. Some investigators have suggested that having a partner, such as a spouse or other family member, should be required for studies of preclinical AD where biomarker disclosure may be part of the study to ensure the patient or study participant has social support or someone to help them make sound medical decisions [50]. Lastly, the ethical principle of Respect for autonomy or self-determination suggests that individual freedom and choice should be supported. Therefore, Harkins et al. [51] developed procedural guidelines for the process of disclosing amyloid PET results to cognitively normal older adults in research studies, should participants consent to the disclosure. The guidelines include the following: • Informed consent must include adequate education, in written format and verbally, that covers basic information about amyloid imaging, the meaning and implications of the results, the risks and benefits, and any relevant information about Alzheimer’s risk factors.

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• All participants should be screened for anxiety and depression prior to revealing their results as part of the process to determine whether or not they would be emotionally ready to receive any results. • Brain imaging should occur on a separate day from the consent in an effort to allow individuals enough time to change their minds. Disclosure of test results should also occur on a separate day from the imaging for the same reasons. • Disclosure of test results should occur in person, and not over the phone. There should also be enough time for the research participant to ask questions and to clarify the meaning of the results. Results should also be offered in writing. Researchers should follow up with the research participant within a week of disclosure to answer any questions they may have and to determine if there have been any changes in the participant’s mood or behavior.

6.5

Conclusion

Diagnosis threat occurs frequently when individuals assess their risk of developing Alzheimer’s disease due to family history, regardless of their knowledge that risk does not guarantee the eventual development of the disease. Diagnosis threat can also be induced in an iatrogenic fashion via genetic testing and amyloid PET imaging when results are disclosed. However, guidelines for clinical and research of biomarkers exist based on ethical principles of beneficence and nonmaleficence, integrity, justice, and respect for self-determination. Ethics principles exist in both research settings and clinical context, and there may be discrepancies between what clinicians and researchers do in practice and what is outlined in consensus statements. This argues for additional research into the ethics of disclosing biomarkers in AD. We argue that such research should take diagnosis threat into account when disclosing test results to patients or research participants. Much is still unknown regarding the actual risk of AD biomarkers and their psychological and social impacts. Therefore, continued research in this burgeoning field remains critical.

References 1. Sperling RA, Aisen PS, Beckett LA, Bennett DA, Craft S, Fagan AM, et al. Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7(3):280–92. 2. Ossenkoppele R, Jansen WJ, Rabinovici GD, Knol DL, van der Flier WM, van Berckel BN, et  al. Prevalence of amyloid PET positivity in dementia syndromes: a meta-analysis. JAMA. 2015;313(19):1939–49. 3. Barthel H, Sabri O. Clinical use and utility of amyloid imaging. J Nucl Med. 2017;58(11): 1711–7. https://doi.org/10.2967/jnumed.116.185017. 4. Jack CR Jr, Knopman DS, Jagust WJ, Petersen RC, Weiner MW, Aisen PS, et al. Tracking pathophysiological processes in Alzheimer’s disease: an updated hypothetical model of dynamic biomarkers. Lancet Neurol. 2013;12(2):207–16.

6  Diagnosis Threat Related to Disclosure of Alzheimer Disease Biomarkers…

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5. Villemagne VL, Burnham S, Bourgeat P, Brown B, Ellis KA, Salvado O, et  al. Amyloid β deposition, neurodegeneration, and cognitive decline in sporadic Alzheimer’s disease: a prospective cohort study. Lancet Neurol. 2013;12(4):357–67. 6. Morris JC, Roe CM, Xiong C, Fagan AM, Goate AM, Holtzman DM, Mintun MA. APOE predicts amyloid-beta but not tau Alzheimer pathology in cognitively normal aging. Ann Neurol. 2010;67(1):122–31. 7. Landau SM, Mintun MA, Joshi AD, Koeppe RA, Petersen RC, Aisen PS, et al. Amyloid deposition, hypometabolism, and longitudinal cognitive decline. Ann Neurol. 2012;72(4):578–86. 8. Mormino E, Brandel M, Madison C.  Not quite PIB-positive, not quite PIB-negative: slight PIB elevations in elderly normal control subjects are biologically relevant. NeuroImage. 2012;59(2):1152–60. 9. Mormino EC, Smiljic A, Hayenga AO, Onami SH, Greicius MD, Rabinovici GD, et  al. Relationships between beta-amyloid and functional connectivity in different components of the default mode network in aging. Cereb Cortex. 2011;21(10):2399–407. 10. Pike KE, Savage G, Villemagne VL, Ng S, Moss SA, Maruff P, et al. β-Amyloid imaging and memory in non-demented individuals: evidence for preclinical Alzheimer’s disease. Brain. 2007;130(11):2837–44. 11. Rabinovici GD, Jagust WJ.  Amyloid imaging in aging and dementia: testing the amyloid hypothesis in vivo. Behav Neurol. 2009;21(1, 2):117–28. 12. Neumann PJ, Hammitt JK, Mueller C, Fillit HM, Hill J, Tetteh NA, Kosik KS. Public attitudes about genetic testing for Alzheimer’s disease. Health Aff. 2001;20(5):252–64. 13. Smedinga M, Tromp K, Schermer MHN, Richard E. Ethical arguments concerning the use of Alzheimer’s disease biomarkers in individuals with no or mild cognitive impairment: a systematic review and framework for discussion. J Alzheimers Dis. 2018;66(4):1309–22. 14. Gooblar J, Roe CM, Selsor NJ, Gabel MJ, Morris JC. Attitudes of research participants and the general public regarding disclosure of Alzheimer disease research results. JAMA Neurol. 2015;72(12):1484–90. https://doi.org/10.1001/jamaneurol.2015.2875. 15. Vanderschaeghe G, Schaeverbeke J, Vandenberghe R, Dierickx K.  Amnestic MCI patients’ perspectives toward disclosure of amyloid PET results in a research context. Neuroethics. 2017;10(2):281–97. https://doi.org/10.1007/s12152-017-9313-z. 16. Vanderschaeghe G, Vandenberghe R, Dierickx K. Stakeholders’ views on early diagnosis for Alzheimer’s disease, clinical trial participation and amyloid PET disclosure: a focus group study. J Bioethical Inquiry. 2019;16(1):45–59. https://doi.org/10.1007/s11673-019-09901-9. 17. Suhr JA, Gunstad J. “Diagnosis threat”: the effect of negative expectations on cognitive performance. J Clin Exp Neuropsychol. 2002;24(4):448–57. 18. Smith JL. Understanding the process of stereotype threat: a review of mediational variables and new performance goal directions. Educ Psychol Rev. 2004;16(3):177–206. 19. Suhr JA, Gunstad J. Further exploration of the effect of “diagnosis threat” on cognitive performance in individuals with mild head injury. J Int Neuropsychol Soc. 2005;11(1):23–9. 20. Trontel HG, Hall S, Ashendorf L, O’Connor MK. Impact of diagnosis threat on academic self-­ efficacy in mild traumatic brain injury. J Clin Exp Neuropsychol. 2013;35(9):960–70. 21. Rue AL, Small G, McPherson S, Komo S, Matsuyama SS, Jarvik LF.  Subjective memory loss in age-associated memory impairment: family history and neuropsychological correlates. Aging Neuropsychol Cognit. 1996;3(2):132–40. 22. McPherson S, La Rue A, Fitz A, Matsuyama S, Jarvik LF. Self-reports of memory problems in relatives of patients with probable Alzheimer’s disease. Int Psychogeriatr. 1995;7:367–76. 23. Hess T, Hinson JT. Age-related variation in the influences of aging stereotypes on memory in adulthood. Psychol Aging. 2006;21(3):621–5. 24. Hess T, Hinson J, Statham J. Explicit and implicit stereotype activation effects on memory: do age and awareness moderate the impact of priming? Psychol Aging. 2004;19(3):495–505. 25. Hess TM, Auman C, Colcombe SJ, Rahhal TA. The impact of stereotype threat on age differences in memory performance. J Gerontol Ser B Psychol Sci Soc Sci. 2003;58(1):P3–P11. 26. Levy B. Improving memory in old age through implicit self-stereotyping. J Pers Soc Psychol. 1996;71(6):1092–107.

106

T. J. Farrer and S. E. Cook

27. Desrichard O, Köpetz C. A threat in the elder: the impact of task-instructions, self-efficacy and performance expectations on memory performance in the elderly. Eur J Soc Psychol. 2005;35(4):537–52. 28. Chasteen AL, Bhattacharyya S, Horhota M, Tam R, Hasher L.  How feelings of stereotype threat influence older adults’ memory performance. Exp Aging Res. 2005;31(3):235–60. 29. Mazerolle M, Regner I, Barber SJ, Paccalin M, Miazola AC, Huguet P, Rigalleau F. Negative aging stereotypes impair performance on brief cognitive tests used to screen for predementia. J Gerontol Ser B Psychol Sci Soc Sci. 2017;72(6):932–6. 30. Fresson M, Dardenne B, Geurten M, Meulemans T. The effect of stereotype threat on older people’s clinical cognitive outcomes: investigating the moderating role of dementia worry. Clin Neuropsychol. 2017;31(8):1306–28. https://doi.org/10.1080/13854046.2017.1307456. 31. Lineweaver T, Bondi M, Galasko D, Salmon D.  Knowledge of APOE genotype affects subjective and objective memory performance in healthy older adults. Am J Psychiatr. 2013;171(2):201–8. 32. Goldman JS, Hahn SE, Catania JW, LaRusse-Eckert S, Butson MB, Rumbaugh M, Strecker MN, Roberts JS, Burke W, Mayeux R, Bird T, American College of Medical Genetics and the National Society of Genetic Counselors. Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of genetic counselors. Genet Med. 2011;13(6):597–605. https://doi.org/10.1097/ GIM.0b013e31821d69b8. 33. Bemelmans SA, Tromp K, Bunnik EM, Milne RJ, Badger S, Brayne C, et al. Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review. Alzheimers Res Ther. 2016;8(1) https://doi.org/10.1186/ s13195-016-0212-z. 34. Burns JM, Johnson DK, Liebmann EP, Bothwell RJ, Morris JK, Vidoni ED. Safety of disclosing amyloid status in cognitively normal older adults. Alzheimers Dement. 2017;13(9):1024–30. 35. Lim YY, Maruff P, Getter C, Snyder PJ. Disclosure of positron emission tomography amyloid imaging results: a preliminary study of safety and tolerability. Alzheimers Dement. 2016;12(4):454–8. https://doi.org/10.1016/j.jalz.2015.09.005. 36. Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, et al. Disclosure of APOE genotype for risk of Alzheimer’s disease. N Engl J Med. 2009;361(3):245–54. https:// doi.org/10.1056/NEJMoa0809578. 37. Chao S, Roberts JS, Marteau TM, Silliman R, Cupples LA, Green RC.  Health behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL study. Alzheimer Dis Assoc Disord. 2008;22(1):94. 38. Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Green RC, REVEAL (Risk Evaluation and Education for Alzheimer’s Disease) Study Group. Genetic risk assessment for adult children of people with Alzheimer’s disease: the risk evaluation and education for Alzheimer’s disease (REVEAL) study. J Geriatr Psychiatry Neurol. 2005;18(4):250–5. 39. Grill JD, Cox CG, Harkins K, Karlawish J. Reactions to learning a “not elevated” amyloid PET result in a preclinical Alzheimer’s disease trial. Alzheimers Res Ther. 2018;10(1):125. https:// doi.org/10.1186/s13195-018-0452-1. 40. Johnson K, Minoshima S, Bohnen N, et al. Update on appropriate use criteria for amyloid PET imaging: dementia experts, mild cognitive impairment and education. Alzheimers Dement. 2013a;9(4):e106–9. 41. Johnson K, Minoshima S, Bohnen N, et al. Appropriate use criteria for amyloid PET: a report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer’s Association. J Nucl Med. 2013b;54(3):14. 42. Lingler JH, Klunk WE. Disclosure of amyloid imaging results to research participants: has the time come? Alzheimers Dement. 2013;9(6):741–4. 43. Klein EP, Kaye J. Dementia specialists and early adoption of amyloid imaging. J Alzheimers Dis. 2013;33(2):445–50. 44. Shulman MB, Harkins K, Green RC, Karlawish J. Using AD biomarker research results for clinical care: a survey of ADNI investigators. Neurology. 2013;81(13):1114–21.

6  Diagnosis Threat Related to Disclosure of Alzheimer Disease Biomarkers…

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45. Vanderschaeghe G, Schaeverbeke J, Bruffaerts R, Vandenberghe R, Dierickx K. From information to follow-up: Ethical recommendations to facilitate the disclosure of amyloid PET scan results in a research setting. Alzheimers Dement. 2018;4:243–51. https://doi.org/10.1016/j. trci.2018.04.002. 46. Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report. Ethical principles and guidelines for the protection of human subjects of research. J Am Coll Dent. 2014;81(3):4–13. 47. Riddick FA Jr. The code of medical ethics of the American medical association. Ochsner J. 2003;5(2):6–10. 48. American Psychological Association. Ethical principles of psychologists and code of conduct (2002, amended effective June 1, 2010, and January 1, 2017). 2017. http://www.apa.org/ethics/ code/index.html. 49. de Wilde A, van Buchem MM, Otten RHJ, Bouwman F, Stephens A, Barkhof F, et al. Disclosure of amyloid positron emission tomography results to individuals without dementia: a systematic review. Alzheimers Res Ther. 2018;10(1):72. https://doi.org/10.1186/s13195-018-0398-3. 50. Grill JD, Karlawish J.  Study partners should be required in preclinical Alzheimer’s disease trials. Alzheimers Res Ther. 2017;9(1):93. https://doi.org/10.1186/s13195-017-0327-x. 51. Harkins K, Sankar P, Sperling R, Grill JD, Green RC, Johnson KA, et al. Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants. Alzheimers Res Ther. 2015;7(1):26.

7

Public Representation of Social and Ethical Issues in Frontotemporal Dementia Anirudh Nair and Veljko Dubljević

Contents 7.1  I ntroduction 7.2  M  ethods 7.2.1  Print Media Portrayal of FTD 7.2.2  Change in Quality of Life 7.2.3  Criminal and Socially Inappropriate Behavior 7.3  Results 7.3.1  Print Media Portrayal of FTD 7.3.2  Effects on Quality of Life 7.3.3  Criminal or Socially Inappropriate Behavior Associated with the Disease 7.4  Discussion 7.4.1  Portrayal of FTD in General 7.4.2  Reports of FTD’s Effects on Quality of Life 7.4.3  Representation of Criminal and Socially Inappropriate Behavior 7.5  Concluding Remarks References

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Abstract

Dementia, and especially frontotemporal dementia, reverses many of the rights that are enjoyed by most individuals in liberal societies. The increasing deficits in cognition and decision-making lead to a legitimate reduction in A. Nair · V. Dubljević (*) Department of Philosophy and Religious Studies, North Carolina State University, Raleigh, NC, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_7

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autonomy. The widespread fear of dementia, which may be fueled by the media, leads to social exclusion and stigmatization of those living with dementia and their families, contributing to significant mental health burdens. This chapter aims to construct a clear understanding of the English language print media representation of: (a) frontotemporal dementia (FTD) in general, (b) the effects it has on persons affected by the disease and their caregivers, and (c) criminal or socially inappropriate behavior associated with the disease. Using specific formal search terms, we retrieved a sample of 137 articles from the Nexis Uni database to identify the media representations of FTD and explore the social discourses of labeling persons as “demented.” Fifty-eight articles portrayed persons living with dementia with negative moralizing metaphors, and 30 articles mention stigmatized behavior in relation to the disease. Stigma towards FTD is a growing problem that can only be solved with a proper assessment of the conditions of health-care delivery and social inclusion that enable persons with dementia to pursue dignified lives. Although resources can limit the care that societies can reasonably provide to such persons, they do not limit the available knowledge and respect that can be offered to people with FTD.

7.1

Introduction

Living with dementia, and especially frontotemporal dementia (FTD), presents a double bind for both persons with dementia and their caregivers. In order to receive adequate support from the health-care system, persons with dementia must be accurately diagnosed, yet dementia diagnoses are also heavily stigmatized and therefore can lead to social exclusion. The medical community and the media sometimes speak about the impact of dementia in catastrophic terms, such as dubbing the phenomenon the “dementia tsunami” and characterizing it as “worse than death” [1]. This “panic-blame framework” [2] conceptualization of dementia has driven dominant social representations that contribute to social isolation and stigmatization, and ultimately constrains access to adequate health care and support that are based on misinformed perceptions of a complete loss of autonomy. Family caregivers must then manage their loved ones’ behavior and deal with the lack of social support and understanding [3]. Additionally, dementia ranks among the most feared conditions by older adults [4]. In fact, people fear dementia more than cancer and even more so than death [1, 5], contributing to mental health issues and stigma. Thus, negative social perspectives on people with dementia are not only general (e.g., “such life is not worth living”); they underscore the general public’s endorsement of specific health-care decisions and outcomes (e.g., “do not waste resources on them”) [6]. The social exclusion associated with dementia has been recognized by relevant societies, such as the Alzheimer’s Society and the World Health Organization

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(WHO), and there has been a wide-ranging push to destigmatize dementia, as well as to create new dementia-friendly communities across the developed world [3]. However, little is known if these activities have actually had any effect on the way the public is informed about and reacting to people living with dementia. In addition, the discourse on dementia is dominated with information about Alzheimer’s disease, while other forms of dementia, such as frontotemporal dementia, largely remain unexplored. FTD is even more likely to be stigmatized due to effects of socio-moral deficits that emerge in the early stage of the disease progression and usually are not immediately identified as the consequence of the disease itself. Indeed, FTD is recognized by presence of symptoms such as disinhibition, social inappropriateness, personality changes, hypersexuality, and hyperorality [7] along with markedly impaired socio-moral judgments [8]. In particular, individuals in early stages of FTD—that is, before the family intervenes and curbs their autonomy—usually commit immoral and illegal acts (fondling private parts in public, shoplifting, etc.) that have lasting repercussions [9] (see also [10]). The disruption in socio-moral decision-making in people with FTD becomes problematic when viewed from the lens of legal responsibility and moral culpability [11]. Persons with FTD do not meet most common standards for legal insanity, including the M’Naghten test and the irresistible impulse test [12]. Additionally, the progressively degenerative nature of FTD makes it difficult to ascertain the extent of the disease in influencing decision-making, especially in cases in their earlier stages. Despite these circumstances, individuals with FTD have been argued to lack substantial capacity to appreciate the immorality of their actions due to the behavioral and neural impairments that come with the disease [10, 12]. Not only does this evidence suggest that those suffering from FTD are incapable of recognizing the harms of their criminal offenses or experiencing remorse for their actions (despite being able to rationally deem them as wrong), it also highlights a glaring discrepancy between our current understanding of the disease and the inability of the legal system to recognize criminal behavior committed by persons living with FTD as the consequence of a disease. The lack of capability of persons living with FTD to recognize their actions as illegal or unethical, which stems from neural abnormalities resulting from the disease, also renders any punitive measures taken against such individuals ineffective, since the very same neural abnormalities prevent them from associating the punishment received with their own behavior. As a result, the punitive measures fail to act as deterrents against future crimes committed by people living with FTD, and the conditions that they might be subjected to following their sentencing may only serve to exacerbate their condition [12]. Thus, in order to shed light on this under-researched issue, we focus on the media portrayal of FTD to ascertain the extent to which the public is informed about the condition and how a lack of information, along with mis- and disinformation, may contribute to the general stigma towards all forms of dementia. Also, it is important to track any reports of physical or cognitive deficits brought on by the disease,

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which may have led to a loss of autonomy and social rights that further ostracize persons with dementia. Additionally, media analysis should track any issues that caregivers of persons with dementia experience that are just as burdensome but not equally represented. Finally, it is imperative to identify any problematic behavior mentioned in the print media that was criminal or socially inappropriate that may have led to stigmatized perceptions of those with FTD. The members of the general public, as both consumers in the media market and constituents of a liberal democracy, are key stakeholders for social norm adoption and change—and, to a certain extent, for public policy and regulatory oversight—, public opinion could affect how dementia is perceived in the future, the kind of response to the increase in dementia prevalence made by the government, and the quality of care provided by the health-care system. For these reasons, it is important to analyze how issues that concern FTD are portrayed in the media.

7.2

Methods

The aim of our project was to construct a clear understanding of the media portrayal of the following issues: 1. Frontotemporal Dementia (FTD) in general. 2. Changes in Quality of Life for Patients and Caregivers. 3. Criminal or Socially Inappropriate Behavior Associated with the Disease. To do so, we first conducted a comprehensive search of the Nexis Uni database on November 19, 2019 using the following search terms (with no time restrictions): (“theft” or “violations” or “violent” or “violence” or “moral” or “immoral” or “morality” or “immorality” or “criminal” or “illegal” or “wrong” or “ethics” or “justice” or “ethical” or “crime”) and “frontotemporal dementia”

We then applied the following filters to our search to obtain news sources relevant to public print media that were available in English: “Newspapers” or “Newswires & Press Releases” or “Magazines & Journals” or “News”

We ultimately retrieved a sample of 277 articles and performed preliminary exclusions that aligned with the following criteria: 1. Irrelevant articles that did not address frontotemporal dementia directly. 2. Tangential articles that mentioned dementia but did not discuss frontotemporal dementia and its associated behavior and effects. 3. Duplicates of any articles already in the sample. Thus, we created a sample of articles that could be arranged chronologically by date. Every tenth article from this sample was selected to construct a smaller pilot

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sample that would be used to assess intercoder reliability and resolve any discrepancies between the coders with regard to the classification of the data. The pilot sample also revealed emerging themes that were not initially anticipated (based on the literature on FTD) that were added as sub codes for the full sample. The pilot sample was subsequently coded by two independent coders (A.N. and a research assistant under supervision of the corresponding author). After conducting a pilot sample review, the same aforementioned exclusion criteria were applied while analyzing each individual article in the full sample, yielding a final sample of 137 articles. Each article from our final sample was classified according to overarching categories based on the five stages of analysis (see below) that reflected the goals of our investigation and further classified into multiple codes based on their incidence of report in the articles from the final sample. The codes for each category are depicted in Fig. 7.1. Our strategy employed five analytic stages, namely: (1) familiarization with the data through reading of articles; (2) identification of a thematic framework that reflects the ideas discussed; (3) indexing the data, i.e., identifying patterns across the articles; (4) charting the data, i.e., comparing data across identified patterns; and (5) mapping and interpreting the data, i.e., making sense of the data holistically (see [13]). Each code was further categorized into subcodes in the interest of broadly cataloguing the myriad of different incidences of the codes. The subcodes for each code are listed below along with the basis used for their classification.

Portrayal of FTD

Metaphors of Dementia Used

Stigma

Tone

Effects on Quality of Life

Loss of Ability

Criminal and Socially Inappropriate Behavior Criminal Behavior Associated with the Disease

Loss of Social Status

Socially Inappropriate Behavior Associated with the Disease

Discussion of Capacity/Autonomy

Legal Outcomes Resulting from Behavior

Recommendations

Discussion of Caregiver Distress

Discussions of Ethics

Discussion of Financial Burdens or Access to Healthcare

Issues with Diagnosis

Fig. 7.1  Classification of overarching categories and their respective codes

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7.2.1 Print Media Portrayal of FTD 7.2.1.1 Metaphors of Dementia Used This code identified metaphors used in public media when describing FTD that contribute to the general perception of the disease and discussion surrounding it. Our study coded for the following types of metaphors: (a) Personhood: These were metaphors that either observed a radical shift in the personality of individuals with FTD (e.g., she “snapped” and “felt like a different person” [13]) or used an analogy to the onset of the disease as an entirely different mental state or, in many cases, a loss of personhood altogether. (b) Moralizing: These phrases reflected language used to describe the disease in value laden metaphors.

7.2.1.2 Stigma For this code, we identified any mention of sources of stigma or feelings of shame that were associated with the disease and its behavior. These sources included: (a) Self-stigma: Stigma that the persons with dementia themselves experienced as a result of feelings of fear, shame, or apprehension towards behavior that was associated with the disease. (b) Social stigma: Misinformed social perceptions and beliefs of dementia that are inaccurate and detrimental to the public portrayal of the disease and those affected. (c) Structural stigma: Societal norms or institutional practices that were detrimental to the public perception of the disease and those affected.

7.2.1.3 Tone The nature of the discussion of each article was identified as capturing one of 3 tones. (a) Negative: Articles that solely discussed the difficulties of dealing with dementia. (b) Balanced/Neutral: Articles that were either purely informative or discussed the aforementioned difficulties and also mentioned recommendations for dealing with dementia or expressed optimism regarding the situation. (c) Positive: Articles that solely discussed coping strategies with no mention of difficulties or distress.

7.2.1.4 Ethics Here, we coded for discussions pertaining to ethical dilemmas: (a) Genetic testing: Discussions regarding ethical issues related to testing for the likelihood of inheriting the disease. (b) End-of-life care: Discussions regarding end-of-life decisions, such as “Do Not Resuscitate Orders” or the prospect of euthanasia. (c) Dignity: Discussions around the respectful treatment of persons with dementia, such as the dilemma of whether they can consent to sex.

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(d) Responsibility: Discussions of the attribution of responsibility to persons with dementia in cases of legal or moral responsibility. (e) Abandonment or separation: Discussions of the ethical dilemma of caregivers separating from or abandoning persons with dementia.

7.2.1.5 Recommendations For this code, we identified any recommendations on how best to deal with the disease, suggested lifestyle choices for preventing or lessening the risk of disease, or strategies for managing the disease and its symptoms that were recommended for both persons with dementia, as well as their caregivers.

7.2.2 Change in Quality of Life 7.2.2.1 Loss of Social Status Here we identified any cases of persons with dementia losing social rights that are essential to daily life and autonomy. In our sample, frequent indications of this loss of social status were the loss of the ability to drive or job loss as a result of the disease. 7.2.2.2 Loss of Ability This code identified any indications of persons with dementia suffering from cognitive impairment, exhibited as a loss of or difficulties with speech, lapses in short-­ term memory or loss of motor control and coordination. 7.2.2.3 Issues with Diagnosis Here we identified whether those affected had any issues as a result of a misdiagnosis of dementia as another disease, or a delayed diagnosis of the disease. 7.2.2.4 Discussions of Financial Burdens or Access to Health Care For this code, we identified any discussions that mentioned any financial burdens that emerged as a result of the disease, or any financial hardships that were brought about by the disease. We also identified whether persons with dementia or caregivers had challenges in accessing adequate medical care and with experienced consultation and caregiving. 7.2.2.5 Discussion of Autonomy Reports of persons with dementia losing autonomy in their daily lives were identified in this code, as indicated by either needing full-time care or varying levels of loss of autonomy. 7.2.2.6 Discussion of Caregiver Distress Here we identified any mentions of distress with care, or in other words distress that was brought about from caring for persons with dementia, in addition to personal distress, i.e., any emotional turmoil suffered as a consequence of the disease’s effect on a loved one or the family relationship.

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7.2.3 Criminal and Socially Inappropriate Behavior 7.2.3.1 Criminal Behavior Associated with the Disease For this code, we identified any reported criminal behavior that was associated with the disease according to the following subcodes: (a) Homicide/Manslaughter: Reports of cases of persons with dementia that were either directly responsible for murder or their actions resulted in the death of an individual. (b) Theft: Reports of theft that were related to acts of shoplifting or robbery. (c) Assault: Reports of assault that  involved persons with dementia physically attacking roommates in care facilities, caregivers, or loved ones. (d) Sexual crimes: Reports of sexual crimes associated with FTD ranging from uncharacteristic sexual assault to persons with dementia possessing child pornography. (e) Damage/Arson: Damage or vandalization of property. (f) Fraud: Reports of persons with dementia participating in bank fraud or similar criminal activities.

7.2.3.2 Socially Inappropriate Behavior Associated with the Disease Frontotemporal dementia can also be associated with frequent socially inappropriate behavior in persons with the disease that usually is not serious enough to bring legal charges, yet still is an alarming behavior. Here we sought to identify the following: (a) Apathy, social withdrawal: Changes in behavior marked by the person with dementia acting entirely apathetic, or exhibiting social withdrawal. (b) Inappropriate speech/Gestures: Reports of any behavior that was awkward, inappropriate for the situation, or off-putting. (c) Aggression or negative feelings: Reports of uncharacteristic (verbal) violence or animosity associated with the disease, especially towards loved ones or caregivers. (d) Wandering: Reports of persons with dementia wandering, often unknowingly, at strange times and being unaware of their surroundings or why they were walking to begin with. (e) Lewd inappropriate behavior: Reports of sexually inappropriate behavior, such as passing lewd comments or undressing in public places in front of others. (f) Impulsive purchases: Reports of persons with dementia uncharacteristically or unknowingly purchasing items they could not afford, sometimes multiple times. (g) Uncharacteristic: Behavior that was entirely unlike the person prior to the disease. (h) Suicidal, self-harm thoughts: Reports of suicide attempts or suicidal ideation.

7.2.3.3 Legal Outcomes Here we identified whether any legal recourse, such as being arrested or charged with a crime, had been taken in response to criminal behavior committed by persons

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with dementia that was associated with the disease. We also coded for mentions of prosecutors taking the individual’s disease into consideration either by acquitting the person living with dementia, deeming them unfit for trial or as incapable of having intent.

7.3

Results

The content analysis resulted in several findings regarding the three overarching themes (1. Portrayal of FTD, 2. Change in Quality of Life, and 3. Criminal and Socially Inappropriate Behavior).

7.3.1 Print Media Portrayal of FTD First, the tone code was one of the most insightful categories in assessing the public media’s representation of dementia (see Table  7.1). Though there were more articles coded negative (9) than there were positive (4), the overwhelming majority of articles were coded as Balanced (122). As Fig. 7.2 demonstrates, there is a general increasing trend in the number of articles regarding frontotemporal dementia, as well as a steady increase in the number of positive articles to match negative articles published. Figure 7.3 demonstrates a similar trend in the increase in reported metaphors used to describe dementia. The use of moralizing metaphors (e.g., “Dementia is cruel; it takes away and it leaves people bereft even when the relative is still living” [14]) to describe the disease in particular, was seen to peak around 2017, around which time a small, yet growing trend in the publishing of positively themed articles can be observed (Fig. 7.2). Some articles also noted a significant shift in personhood of persons with dementia that ranged from uncharacteristic changes in personality (e.g., “the disease that has turned her partner into a ‘nine-month-old in an adult body’”[15]) to a complete loss of personhood (e.g., “she was still there, but it’s like she wasn’t anyone anymore”[16]), which suggests that radical changes in behavior could be seen as a symptom for detecting FTD. Many articles also referenced stigmatizing behavior surrounding the disease (see Table  7.2). The most frequently discussed type of stigma was social (20), followed by self-stigma (7) and structural stigma (2). These types of stigma that are faced by persons with FTD prevent them from reaching out to receive the help they need (e.g., “I wouldn’t go outside because I felt embarrassed. I felt like a failure because if people looked at me, they didn’t see anything wrong with Table 7.1  Number of articles for each tone

Tone Negative (9) Positive (4)

Balanced (122)

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Number of Articles

25 20 15 10 5 0

2001 2006 2007 2008 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Year Negative

Balanced

Positive

Fig. 7.2  Distribution and tone of articles, 2001–2019 Distribution of Metaphors Used, 2001–2019

Number of Metaphors

8 7 6 5 4 3 2 1 0

2001 2007 2008 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Year Changes in Personhood

Moralizing

Fig. 7.3  Distribution of metaphors used, 2001–2019

Table 7.2  Type of stigma mentioned Type of stigma mentioned Social (20) Structural (2)

Self (7)

me” [17]). Additionally, both social and self-stigma can manifest in various social institutions and infrastructure that serve to further alienate those with dementia and hinder any attempts to still function in society (e.g., individuals can be faced with difficulties in finding employment or support because of a systematic lack

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of recognition: “A dementia diagnosis closes down opportunities, it makes life harder” [18]). These results signal the pressing need for an informed and tolerant discourse of FTD that will help to mitigate stigma in social settings for persons with the disease. This would also aid in reducing the stigma a person with FTD might feel towards the disease and themselves in order to accept their circumstances and better handle the changes in their life and continue to live with a level of social and self-respect. Despite the challenging and discouraging nature of the disease for both those affected and their caregivers and loved ones, it is important to note that many articles had a multitude of different recommendations on how best to handle the disease, a majority of which discussed lifestyle habits and changes that mitigate the symptoms of the disease (e.g., gardening for persons with dementia or helpful diet plans). Although most of these recommendations were intended for persons with the disease (31), many recommendations were identified for caregivers (23) as well. These recommendations ranged from suggestions for persons with FTD on how to best deal with the disease to how caregivers can adjust their lifestyle to best meet the demands of caring for a person with FTD and dementia in general. This trend is also reflected in the overwhelming majority of balanced articles that both realistically described the struggle and burden of dealing with FTD while also suggesting the best course of action to take and how to cope with the disease (see Table 7.3).

7.3.2 Effects on Quality of Life The effects of FTD on one’s quality of life are far-reaching and are not limited to persons with dementia alone. Though the physical effects of FTD are prominent and have profound effects on physical capacities, these symptoms often do not emerge until later on in the disease progression. The reported loss of capacities as a result of FTD ranged from cognitive impairments, such as disruptions in speech (28) and memory (24), to physical impairments (see Table 7.4), such as a loss of motor control (7).

Table 7.3 Recommendations

Table 7.4  Loss of capacities

Recommendations Patients/disease (31)

Loss of capacities Speech (28) Motor (7)

Caregivers/caring for persons with dementia (23)

Memory (24)

120 Table 7.5  Loss of autonomy

A. Nair and V. Dubljević Loss of autonomy Full-time care needed (59)

Supervision required (27)

The loss of these fundamental capacities typically results in the person with dementia partially losing autonomy (e.g., being unable to cook, having to leave law school, or struggling with important decisions) to fully losing autonomy and requiring full-time care or supervision. There were more than twice the number of reports of full-time care being required than there was of only supervision (see Table 7.5), suggesting that the public is informed that it is much more difficult to continue to function normally with minimal assistance and in most instances. Many of the reported lost capacities are necessary for daily life and result in the revocation of social rights that are often essential to functioning in society (see Table  7.6). Articles frequently noted persons with FTD struggling with driving, ranging from difficulties with navigation to a complete inability to drive (29). In fact, in many instances, persons with FTD who were unaware of their disease would find themselves driving the wrong way on roads (e.g., “[He was] driving the wrong way down a highway” [19]), which led them to seek a diagnosis. Reports also mention that persons with FTD struggle with both keeping their occupation and/or finding employment following the disease (15), as they are either incapable of keeping up with the demands of their jobs or met with employers that are reluctant to hire someone with dementia (e.g., “failure to communicate got him fired from his job at a consulting firm” [20]). This loss of freedoms only serves to exacerbate the financial burdens and difficulties that persons with dementia and their caregivers are already subjected to. Caregivers struggle with affording proper care for dementia and are faced with compromising their other finances (e.g., dipping into pensions, “the caregiver is juggling three jobs, desperate to keep her home after her husband recently stopped working” [21]). In some cases, securing proper medical funding from the government to care for people living with dementia can be a tricky process. This only adds to the ever-­ growing distress of caring for a person with FTD. The many sources of distress that plague caregivers, from the stress of caring for someone with the disease or finding proper health care, to personal stress and grief, are reported as unfortunate and unavoidable consequences of caring for someone with FTD (see Table 7.7). Caregivers may also experience personal stress from facing ethical dilemmas that are unique to caring for someone with FTD. These ethical dilemmas can be sources of emotional turmoil and usually do not have a straightforward answer, but nonetheless are important questions that merit further discussion. Many of the questions that were identified in the media coverage were not limited to FTD alone, such as questions about the ethics of testing for heritability of the FTD gene, which was the most frequent ethical dilemma we identified, among others (see Table 7.8). Even if caregivers can afford proper health care, there were many reported incidences of inaccessibility to proper health care (17). These range from struggling to find professional medical counsel to many secondary care professionals being inadequately trained or equipped to deal with a disease as unique as FTD (see Table 7.9).

7  Public Representation of Social and Ethical Issues in Frontotemporal Dementia Table 7.6  Loss of social status

Loss of social status Driving (29)

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Job Loss (15)

Table 7.7  Discussions of caregiver distress Discussion of caregiver distress Distress with Care (5) General Distress/Personal Stress (48)

Table 7.8 Discussions of ethics

Disease (8)

Ethics Genetic testing for dementia (5) End-of-life decision-making (3) Abandonment/separation (2)

Dignity (4) Responsibility (2)

Table 7.9  Discussion of financial burdens or access to health care Discussion of financial burdens or access to health care Financial burdens (26) Access to health care (17)

Table 7.10  Issues with diagnosis Issues with diagnosis Misdiagnosis (32)

Prolonged diagnosis/not diagnosed in time (22)

With symptoms of apathy and memory loss, dementia is often misdiagnosed as depression or Alzheimer’s among other incorrect diagnoses, leading to improper treatment (see Table 7.10). Often times, in the media reports, caregivers also mentioned regret at not noticing the signs of dementia swiftly enough, or simply dismissing them as stress or symptoms of another disease. In addition, dementia patients will often mask their symptoms because of a fear of stigma, delaying an accurate diagnosis (e.g., “husbands come in and say I knew my wife was sick but when her parents came, she hid it so they thought I was lying about her condition” [22]).

7.3.3 C  riminal or Socially Inappropriate Behavior Associated with the Disease Incidence of FTD, and in particular behavioral variant frontotemporal dementia, is often associated with uncharacteristic criminal and socially inappropriate behavior. We found that violent and egregious crimes were reported more frequently than any other criminal offence (see Table 7.11) with the most frequent subcode being homicide (e.g., “Sherriff’s deputy shooting his wife and sister-in law” [23]) and/ or manslaughter (e.g., a nursing home roommate dying from injuries that were

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Table 7.11  Criminal behavior associated with the disease Criminal behavior associated with the disease Homicide/manslaughter (9) Shoplifting/robbery (7) Damage/arson (2)

Assault (8) Sexual crimes (4) Bank fraud (2)

sustained a month prior during an altercation caused by an FTD patient). There was, however, a variety of other crimes that were attributed to the onset of FTD, such as sexual crimes (e.g., a man with dementia following women around, making suggestive remarks and sexually assaulting a woman by sliding his hand down her pants). Unfortunately, according to media reports, in some instances this attribution comes only after several repeated incidences, and it is hard to distinguish the criminal behavior from the effects of the disease. The difficulty to establish this distinction only contributes to the stigma surrounding FTD and also leads to criminal arrests or charges that overlook the disease during the judicial process. We identified seven media reports of instances in which FTD was being taken into consideration during sentencing, which resulted in persons with FTD being deemed unfit to stand trial or being incapable of forming criminal intent (e.g., a man who was charged with harassment was found not guilty by insanity after testimony from two forensic psychiatrists stating that he was suffering from a mental disorder at the time and lacked the ability to form intent) (see Table 7.12). The effects of FTD which are causing the emergence of criminal behavior are also implicated in a wide variety of socially inappropriate actions that, although are not criminal offences themselves, are still equally as alarming and in almost all cases completely uncharacteristic of the persons prior to effects of FTD. As was noted by the academic discussion of FTD referenced in the introduction, the media has reported that, in many cases, it can be hard to distinguish between what seems like intentionally inappropriate behavior (e.g., “In the supermarket, she’ll go up to children and pinch their cheeks” or “once while talking to a visiting daughter he suddenly began dancing around the front lawn like a child. He often laughed at inappropriate things” [24, 25]) and the symptoms of a disease, which can further the social stigma. Many of these effects are also mischaracterized as symptoms of other diseases such as depression (e.g., “She became more and more withdrawn and her empathy went. It was similar to someone maybe suffering from depression” [26]), making diagnosis even harder. In some cases, the behavior is especially egregious and uncharacteristic, such as verbal aggression or lewd behavior towards others, and can alienate loved ones or caregivers from the person with FTD, further exacerbating the circumstances of caregiving (e.g., “He has inappropriate behavior, irritation, mood swings” or “she became unreasonably angry with her daughter for talking on the phone late at night. She started yelling in what her partner called ‘a rage’” [27]). In other cases, the behavior reported can be as harmless as wandering (e.g., “Repeatedly wandered into the house that was being built down the street—despite the “No Trespassing” sign” or “He’d wander at night and be found by police” [18,

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Table 7.12  Type of legal outcome Type of legal outcome Acquitted/declared unfit or incapable of intent (9)

Arrested/charged (7)

Table 7.13  Socially inappropriate behavior associated with the disease Socially inappropriate behavior associated with the disease Apathy, social withdrawal (22) Aggression or negative feelings (22) Inappropriate speech/gestures (22) Lewd inappropriate behavior (11) Wandering (11) Impulsive purchases (4) Suicidal, self-harm thoughts (2) Uncharacteristic behavior (2)

28]). Finally, the uncharacteristic behavior is also expressed as making unnecessary and out-of-character purchases and, in some instances, leads people to become even more susceptible to scamming, which adds to the already troubling financial burdens that come with FTD (see Table 7.13).

7.4

Discussion

The media representation of FTD to a large extent mirrors the academic debate on the disease. On the one hand, there is a notable recognition of the serious impairments in cognition and socio-moral decision-making that emerge as a result of FTD. On the other hand, there is an increase in recognition that the lives of people that are affected are still valuable. The puzzling set of early symptoms creates social tensions as the people affected are reported to cease to care about things that they found important before the disease onset. In the usual course of social life, people react to such asocial behavior with reactive moral attitudes [11], but there is a growing recognition that moralization of behavior of FTD patients is misplaced [10].

7.4.1 Portrayal of FTD in General Our results point to a picture of a relatively mature (i.e., not as prone to catastrophizing) public discussion of FTD. Thus, the so-called “panic-blame” framework which was observed in earlier work on media representation of dementia and Alzheimer’s disease seems to be in decline, or is not as pronounced in the case of FTD coverage. Even though negative coverage of the disease was more prevalent than positive coverage, balanced approaches dominate the discussion, and there is less negative coverage in more recent years. This may be due to concerted efforts by the WHO and other relevant societies to decrease engaging in activities and language that would further stigmatize patients and caregivers.

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However, moralizing language is still used to describe the disease and patients living with FTD, and the metaphors used to describe FTD frequently link personality changes to childishness and other descriptions that most adults find demeaning. Social stigma is frequently reported, and there is some recognition that stigmatizing attitudes are avoidable and cause distress. Media reports provide useful recommendations for patients and caregivers, based on interviews with family members. Thus, it could be said that caregivers are given a voice in the public discussion, but not FTD patients themselves, which may be morally problematic in democratic societies. The topic of ethics as it relates to FTD is not the primary focus of media reports, and issues that are mentioned tend to be practical. Given the deficits in socio-moral decision-making associated with the disease, it is safe to assert that the English language coverage appears to be cautious and even-handed.

7.4.2 Reports of FTD’s Effects on Quality of Life Media reports may be misinforming the public about the level of loss of autonomy caused by FTD, at least in the early stages of the disease progression. Namely, two-­ thirds of the reports that deal with patient autonomy focus on the need to receive around-the-clock care, which may be the case in the later stages of the disease but may cause friction and avoidable suffering in the early stages of FTD. In fact, the capacities related to autonomy are not fully lost in those stages [10], and the tension between the wish for persons with dementia to continue living as autonomous adults and the need to monitor and control certain aspects of life, most notably financial decisions, may be at the root of caregiver distress. A large sample of the articles discussed personal stress associated with caring for someone living with FTD. Apart from the social tensions from the process of reversal of autonomy, financial issues, and barriers to health-care access, including instances of misdiagnosis, complicate the lives of families with loved ones who live with FTD. Media reports mostly discuss loss of speech and memory capacity, and while these are important in terms of perception of autonomy and point to a need for advocacy and aid in decision-making, such loss of capacity should not be conflated with a complete loss of autonomy. Conversely, the comprehensive coverage of the dilemmas faced by caregivers stands in contrast to the limited mention of the socially induced personal stress faced by the persons with dementia themselves, outside of the immediate challenges that the disease presents at its onset. Although the burden of dementia is shouldered by the caregivers that help with the disease, this should not exclude or eliminate coverage of stress faced by individuals living with dementia. This lack of coverage also reinforces the aforementioned imbalance between the weight given to the voices of caregivers as opposed to the persons with dementia themselves in public discourses. The loss of social status, including the right to drive and pursue employment opportunities, weighs heavily on people living with FTD and their family members. On the one hand, the ability to drive is a hallmark of maturity in the United States, and persons living with FTD frequently resent the loss of the freedom associated

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with driving vehicles. On the other hand, the media reports of traffic accidents and other events associated with FTD point to the conclusion that the public is informed that driving rights of persons with FTD should be curbed. Loss of income and professional status may weigh the most on people living with FTD and their caregivers. The media are adequately representing this struggle, alongside the fact that there is insufficient social support. Despite the laudable efforts by the media in covering the changes in quality of life faced by persons with dementia and caregivers alike, our media sample raises a few concerns in terms of areas of coverage that merit further attention. In addition to the issues previously highlighted, such as the need for more discussion regarding the personal stresses of persons with dementia, the high number of articles that mentioned “Issues with Diagnosis” (see Table 7.10) indicates a need for extended coverage of the likelihood of symptoms of dementia, and particularly FTD, to be misinterpreted as a number of other neurological diseases or mental illnesses. The inaccurate diagnosis of dementia both delays the administration of appropriate treatment and strategies for coping with FTD, but also robs individuals of the time they have remaining to prepare for the progressive degeneration of the disease swiftly and efficiently. A balanced and well-rounded portrayal of dementia in the media is crucial to educating the public on hallmarks of the disease that can be spotted early on during the onset of the disease, thus saving valuable time.

7.4.3 R  epresentation of Criminal and Socially Inappropriate Behavior FTD is newsworthy exactly because of the asocial and antisocial behaviors that the public finds shocking. However, even though there is a smaller number of reports of cases where FTD patients engaged in truly violent behavior, most of the discussion is about negative feelings and behaviors that are merely socially inappropriate. Conversely, the reported legal outcomes of FTD patients fall into cases where the legal system is taking its course as usual (e.g., they are charged or convicted), or where the considerable discretion of the prosecutor comes into play in dropping charges. As discussed above, there is an increasing recognition that persons living with FTD are not fully autonomous [11], in the sense of bearing legal responsibility for their actions, but retain a level of autonomy that puts them into the position similar to that of juvenile defendants in the legal system. Thus, the media coverage is reflective of the wider societal issue with FTD: if the decisional and volitional capacities of people living with FTD are perceived as decreased and their rights accordingly curtailed, is it fair to allow the legal system to treat them as common criminals? In recent years, there has been a push to use diversion courts for populations with deficits in autonomy, including juveniles, addicts, and mental health patients whose difficulties in moral cognition might be considered before ascribing criminal responsibility [29]. These so-called “problem-solving courts” have been established

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throughout the United States and in many other Western countries in the interest of dealing with model cases of loss of autonomy in which the “default” position can no longer be applied with a clear conscience [11]. In recognition of the lack of autonomy in the case of addiction, “drug courts” grew in the last few decades from only one court to a movement with thousands of courts in the United States (see Mitchell [30]). The US legal system also instantiated “mental health courts” as diversion interventions designed to engage defendants with mental illness in treatment in lieu of incarceration [31]. The underlying assumption is that a lack of autonomy necessitates the shift in the criminal court’s focus from criminal processing to providing therapy. Dubljević [10] has argued that there is a need to create diversion courts for dementia, and specifically FTD.1 It could also be argued that FTD is another clear case where autonomy is compromised, and establishing a diversion court for people with dementia would be justified on the grounds of principle of autonomy.2 Following a procedure similar to other diversion courts, such a “dementia court” would have four defining aspects: (1) a specialized docket of cases, in which defendants have (at least “possible”) dementia, (2) a collaborative and non-adversarial team comprised of a judge, prosecutor, defense attorney, and a neurologist, (3) a link to a local support center, and (4) some form of sanction for failing to comply with the court requirements (cf. [31]). Ideally, most FTD cases would be addressed in “pre-­ plea” case processing (i.e., before they have been sentenced in a regular criminal court). In those cases, successful completion of court requirements would result in dropping of charges. However, some cases will undoubtedly be “post-plea” [32]. In these cases, individuals with “possible” FTD would be admitted to the dementia court after conviction but before sentencing in the regular criminal court. In those cases, successful completion of the program would result in either probation or a sentence of time served. Finally, society and the media may need to reconsider the stigma associated with FTD. Arguably, many of the behaviors associated with the condition are moralized, considered to be shameful, and even deeply discrediting. The consistent acknowledgement of limitations and deficits in autonomy could facilitate recognition that individuals living with FTD are not voluntarily engaged in inappropriate behavior, that their family members do not share “flawed” character traits and that they should not be socially isolated. Indeed, current social perceptions that the life of a “demented individual” is not worth living provide value judgments that underpin social, moral, and even political attitudes about health-care expenses and allocation of medical resources. Social stigma, which is predicated on the assumption

 In what follows, we draw and expand on Dubljević [10].  As people with Alzheimer’s disease (AD) also exhibit failures of socio-moral judgment and commit crimes, Dubljević is not arguing for establishing a diversion court specifically for FTD, rather he presumes that most of the cases will be from the FTD population, specifically because criminal behavior is recurrent in FTD. For instance, a Swedish study reported instances of criminal behavior in 14.9% of AD patients and 42% of FTD patients, whereas the criminal behavior was recurrent in 56.4% of AD patients and 89% of FTD patients. See Liljegren [33]. 1 2

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that certain behavior is freely chosen, often involves interpersonal victimization or discrimination that may discourage the affected individual from seeking treatment (for a longer argument, see Dubljević [34]). The destigmatization efforts are well justified but not yet complete; there is much more work to be done in changing social attitudes and encouraging family members to speak out and seek help before financial damage is done. Society should not at the same time deny rights (and even social respect) to persons living with FTD based on their loss of autonomy and continue blaming and socially excluding them or their families. The morally right thing to do is to offer help and assistance in seeking and obtaining treatment and to avoid practices that discourage or postpone treatment.

7.5

Concluding Remarks

The burden of dementia is multidimensional and affects various aspects of life that are both directly and indirectly related to the disease itself [35]. Dilemmas such as access to health care, the financial burdens of the disease, and changes in quality of life not only infringe on the quality of life of persons with the disease but also are shouldered by their caregivers and loved ones. The socially inappropriate and sometimes criminal behavior that is an unfortunate symptom of FTD can contribute to stigmatized perceptions of those with the disease, and our study has demonstrated that such has been the case for many persons, as reported in English language media coverage of the disease. The non-stigmatizing portrayal of the disease to the public is essential to both mitigating the burdens of the disease for patients and caregivers alike, as well as to the construction of public opinion and policy that influence the treatment of persons with FTD who are currently viewed as criminals in the eyes of the law, rather than people who need careful attention and treatment. Acknowledgments  The authors would like to thank members of the Neuro-Computational Ethics Research Group at NC State University for their valuable feedback (in alphabetical order by last name): Allen Coin, Elizabeth Eskander, Abigail Presley, and Abby Scheper. Special thanks to Leila Ouchchy for assisting with pilot coding.

References 1. Spiro N. Music and dementia: observing effects and searching for underlying theories. Aging Ment Health. 2010;14(8):891–9. 2. Ramos KM, Koroshetz WJ.  Integrating ethics into neurotechnology research and development: the US National Institutes of Health BRAIN Initiative. In: Illes J, editor. Neuroethics: anticipating the future. Oxford: Oxford University Press; 2017. p. 144–56. 3. Batsch NL, Mittelman MS. World Alzheimer report 2012: overcoming the stigma of dementia. London: Alzheimer’s Disease International; 2012. 4. Family Caregiver Alliance [FCA]. 2016. https://www.caregiver.org/ caregiver-­statistics-­demographics. 5. World Health Organization [WHO]. Dementia: a public health priority. Geneva: World Health Organization; 2012. 978-92-4-156445-8

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6. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. Am J Geriatr Psychiatry. 2004;12(3):240–9. 7. Rascovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain. 2011;134(9):2456–77. 8. Manes F, Torralva T, Ibáñez A, Roca M, Bekinschtein T, Gleichgerrcht E. Decision-making in frontotemporal dementia: clinical, theoretical and legal implications. Dement Geriatr Cogn Disord. 2011;32(1):11–7. 9. Mendez MF, Anderson E, Shapira JS. An investigation of moral judgments in frontotemporal dementia. Cogn Behav Neurol. 2005;18(4):193–7. 10. Dubljević V.  The principle of autonomy and behavioral variant frontotemporal dementia. J Bioeth Inquiry. 2020; https://doi.org/10.1007/s11673-­020-­09972-­z. 11. Nelkin DK. Frontotemporal dementia and reactive attitudes: two roles for the capacity to care? J Appl Philos. 2019;36(5) https://doi.org/10.1111/japp.12365. 12. Berryessa CM.  Behavioral and neural impairments of frontotemporal dementia: potential implications for criminal responsibility and sentencing. Int J Law Psychiatry. 2016;46:1–6. 13. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Huberman AM, Miles MB, editors. The qualitative researcher’s companion. Thousand Oaks: Sage; 2011. p. 305–29. 14. Yule S. Gran spared jail for killing husband over shopping trip [Internet]. Metro Newspaper UK.  Metro (UK); 2019 [cited 2020 Feb 8]. Available from: https://www.metro.news/ gran-­spared-­jail-­for-­killing-­husband-­over-­shopping-­trip/1619716/. 15. Gordon M.  Dementia is called the longest goodbye. I am trying to get across the effect of dementia on Mum [Internet]. York Press. York Press; 2019 [cited 2020 Feb 8]. Available from: https://www.yorkpress.co.uk/news/17379709. york-­artist-­kate-­buckley-­to-­show-­work-­inspired-­by-­mums-­dementia-­in-­residents-­festival/. 16. Lockley M. ‘He’s like a baby in an adult body’; Partner’s battle to care for the man she loves after a rare diagnosis of dementia. Birmingham Post; 2017Aug 24. 17. Manger W.  Scouting for Girls star Roy Stride terrified of developing dementia like his mum [Internet]. Daily Mirror; 2017 [cited 2020 Feb 9]. Available from: https://www. mirror.co.uk/config/config_section/config_section_3am/config_section_celebrity-­news/ scouting-­girls-­star-­roy-­stride-­10334237. 18. Newsroom T. My battle with dementia [Internet]. Yorkshire Evening Post. Yorkshire Evening Post; 2017 [cited 2020Feb9]. Available from: https://www.yorkshireeveningpost.co.uk/health/ my-­battle-­dementia-­607956. 19. Unwitting killers. The Timaru Herald (New Zealand). 24 May 2019. 20. Kelly A. Alzheimer’s not only type of dementia, doctor says. The Record (Kitchener-Waterloo, Ontario). 12 Jan 2001. 21. Grady D.  When illness makes a spouse a stranger [Internet]. The New  York Times. 2012 [cited 2020 Feb 9]. Available from: https://www.nytimes.com/2012/05/06/health/a-­rare-­form-­ of-­dementia-­tests-­a-­vow-­of-­for-­better-­for-­worse.html. 22. Hardesty G.  Can dementia turn killing into mercy? [Internet]. Orange County Register; 2010 [cited 2020 Feb 9]. Available from: https://www.ocregister.com/2010/12/20/ can-­dementia-­turn-­killing-­into-­mercy/. 23. Taylor B.  Alzheimer’s just one of several types of Dementia [Internet]. The Elkin Tribune; 2017 [cited 2020 Feb 9]. Available from: https://www.elkintribune.com/news/17860/ alzheimers-­just-­one-­of-­several-­types-­of-­dementia. 24. Louis CS. Doctors worry verdict in A.L.S. murder case could stigmatize the disease [Internet]. The New  York Times; 2015 [cited 2020 Feb 9]. Available from: https://www.nytimes. com/2015/04/30/health/doctors-­worry-­acquittal-­in-­als-­murder-­case-­could-­further-­stigmatize-­ the-­disease.html. 25. Gan E. When a loved one with dementia starts hitting others or lashing out [Internet]. TODAY online; 2018 [cited 2020 Feb 9]. Available from: https://www.todayonline.com/singapore/ when-­loved-­one-­dementia-­starts-­hitting-­others-­or-­lashing-­out.

7  Public Representation of Social and Ethical Issues in Frontotemporal Dementia

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26. Boodman SG. Strange past, scary future; a man goes from odd behavior to a difficult diagnosis. Richmond Times; 2007 July 19. 27. Pearse A, Pearse L.  Brave brothers leading the fight against evil dementia that took their mum [Internet]. Latest Yorkshire News; 2017 [cited 2020 Feb 9]. Available from: https://www.yorkshirepost.co.uk/news/latest-­news/ brave-­brothers-­leading-­the-­fight-­against-­evil-­dementia-­that-­took-­their-­mum-­1-­8624749. 28. Living well with dementia [Internet]. TheRecord.com. 2013 [cited 2020 Feb 9]. Available from: https://www.therecord.com/community-­story/5907989-­living-­well-­with-­dementia/. 29. Curwen T.  Brain disease leads family, scientists to search for answers [Internet]. Greensboro News and Record; 2012 [cited 2020 Feb 9]. Available from: https://www. greensboro.com/news/brain-­d isease-­l eads-­f amily-­s cientists-­t o-­s earch-­f or-­a nswers/ article_26ef5c42-­5704-­5b57-­941a-­b2d792339b86.html. 30. Mendez MF. The unique predisposition to criminal violations in frontotemporal dementia. J Am Acad Psychiatry Law. 2010;38(3):318–23. 31. Mitchell O, Wilson DB, Eggers A, MacKenzie DL. Assessing the effectiveness of drug courts on recidivism: a meta-analytic review of traditional and non-traditional drug courts. J Crim Just. 2012;40:60–71. 32. Wolff N, Fabrikant N, Belenko S.  Mental health courts and their selection processes: Modeling variation for consistency. Law Hum Behav. 2011;35(5) https://doi.org/10.1007/ s10979-­010-­9250-­4. 33. Liljegren M, Waldo ML, Santillo AF, et al. Association of neuropathologically confirmed frontotemporal dementia and Alzheimer disease with criminal and socially inappropriate behavior in a Swedish cohort. JAMA Netw Open. 2019;2(3):e190261. 34. Jaworska A.  Challenges for autonomy in the face of dementia: the case of deception. In: Dubljević V, Bottenberg F, editors. Living with dementia: ethical and neuroscientific issues in international perspectives. Cham: Springer; 2021. p. 55–68. 35. Dubljević V. Disease and wellness across the lifespan: a global perspective on mental health burden of dementia. In: Stein D, Singh I, editors. Global mental health and neuroethics. Amsterdam: Elsevier; 2019. p. 225–35.

8

Assessing Consent to Intimate Sexual Relations Among Nursing Home Residents with Dementia Evelyn M. Tenenbaum

Contents 8.1  8.2  8.3  8.4 

Introduction Dilemmas for Nursing Homes Related to Sexual Relationships Setting Parameters for Acceptable Sexual Conduct Determining Capacity to Consent 8.4.1  Wide-Ranging Cognitive Abilities and Sexual Activity 8.4.2  Setting a Standard for Consent 8.5  Determining the Role of Patients’ Prior Values 8.5.1  Critical Interests and Substituted Judgment 8.5.2  Advance Directives 8.5.3  Experiential Interests and the Best Interests Test 8.5.4  The Role of Critical Interests Advocated by Experiential Theorists 8.5.5  Balancing Test 8.6  When No Assessment of Critical Interests Is Necessary 8.7  Outlining the Steps in Determining Consent References

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Abstract

Some of the most sensitive and controversial issues in nursing homes today involve intimacy and sex among nursing home residents with dementia. Due to longer life expectancies and the many baby boomers in their 60s and 70s, these issues are likely to arise with increasing frequency. This chapter focuses on the inherent difficulties faced by nursing homes in deciding whether dementia patients have capacity to consent to intimate sexual relationships. The difficulties are rooted in the very nature of both dementia and sex. Patients with dementia E. M. Tenenbaum (*) Albany Law School, Albany, NY, USA Albany Medical College, Albany, NY, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_8

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have fluctuating cognitive abilities, sometimes during a single day, and sexual acts—such as caressing and sexual intercourse—have differing cultural and social significance. In addition, nursing homes must protect patients from sexual exploitation and harm, while also protecting their right to enter into satisfying, self-affirming, intimate sexual relationships. Due to these complexities, nursing homes need clear standards for determining whether residents with dementia have capacity to consent to sexual relations. In order to support patient autonomy and make the best decisions for patients, nursing homes must also determine whether to follow the patients’ precedent values and advance directives or give priority to their current well-being. This chapter reviews the varying approaches to consent to sexual activity by dementia patients and concludes that patient consent should include determining whether the patient wants the sexual relationship, can communicate a request to stop, and can respect a partner’s request to stop. The chapter also analyzes the continuing scholarly discussion of whether decision-making regarding sexual relationships should take prior values into account. This analysis includes a discussion of the philosophical and legal bases for using substituted judgment, best interests, and functional competence approaches and recommends a balancing approach that takes both the patient’s experiential and critical interests into account.

8.1

Introduction

When thinking about care for elderly residents with dementia, most people never consider their needs for intimacy and sex, especially when they are residing in a nursing home. This mindset is understandable because dementia is a debilitating disease affecting intellectual functioning and memory. With all of the care concerns that flow from these significant impairments, intimate sexual relations would appear to be of minimal importance. However, the basic human need for intimacy and sex [1] survives into the later stages of dementia [2–4]. While there are over 70 types of dementia, this chapter focuses on Alzheimer’s disease and multi-infarct dementia, which together cover approximately 95% of individuals with dementia who are over 75  years of age [5]. Individuals with these dementias frequently also experience personality changes and impairments in higher-level functioning such as judgment, language, and recognition of people and objects. This chapter deals with intimate sexual activity because intimate relationships can have a profound effect on health, self-esteem, and quality of life, while casual relationships do not enjoy these same benefits [6]. Intimate sexual activity has been defined as including not only sexual intercourse but also kissing, hugging, caressing, and other displays of affection, all of which are natural ways of showing love and caring [7]. Although intimate relationships can be either sexual or asexual, in some relationships, intimacy will be closely linked to sexual desire [8]. Just like

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other adults, nursing home residents with dementia need the freedom to progress from caressing to greater physical intimacy if they so choose. Preventing this natural progression will lead to feelings of “frustration and deprivation” [6, p. 38]. On the other hand, allowing sexual intimacy has many health benefits; sexual activity has been found to “reduce the risk of cancer, reduce the risk of heart disease, help control obesity, and reduce pain” [4, p. 934, 3]. Nor only are intimate sexual relationships important to health, but they can also reduce the loneliness and depression that often come with dementia, especially if the person resides in a nursing home. More than 48% of the approximately 1.4 million patients in U.S. nursing homes suffer from dementia [9]. When these patients move into their nursing homes, they generally leave their families and most of their possessions behind and lose control over many aspects of their daily lives, including when to eat and sleep. At the same time, dementia patients suffer additional losses, including loss of memory and some ability to express themselves [10]. In this environment, where there is so much loss and isolation, intimate sexual relationships can help combat loneliness and provide pleasure, tenderness, tension-reduction, and a sense of security [10, 11]. They can also help prevent social isolation and provide emotional support and validation of self-worth [4, 12, 13]. As Gayle Doll writes, “[s]haring an intimate relationship can bring happiness, joy, and meaning to the life of an older adult who faces each day with confusion. Other emotions that sexual expression and intimacy can evoke include shared trust, warmth, humor, comfort and safety” [13]. Despite the clear benefits of intimate sexual relationships, some of the most sensitive and controversial issues in nursing homes today involve intimacy and sex among nursing home residents with dementia, and these issues are likely to arise with increasing frequency due to longer life expectancies and the many baby boomers who are now reaching old age. This chapter will focus on the difficulties nursing homes face in determining whether they should support an intimate sexual relationship in the home or choose not to allow it to continue. In making this decision, the nursing home must consider whether or not the patients’ behavior impinges on the rights of other nursing home residents or on their own rights to live in a safe environment. Nursing homes also have an obligation to ensure that sexual relationships are not exploitative or abusive. For this reason, the home must determine whether patients engaging in sexual activity have capacity to consent to a sexual relationship. In addition, in order to “make the decision that is good for [a] patient in the fullest sense,” [14, p. 67] nursing homes must decide what weight they should give to advance directives and the patients’ prior values, and correspondingly, what weight should be given to the residents’ current interests and desires. There is considerable disagreement among scholars who have addressed issues concerning consent, capacity, and the roles of prior values and current interests in assessing whether or not nursing homes should support intimate sexual relationships between residents with dementia. This chapter addresses the reasons for these disagreements and proposes a solution that respects nursing home residents’ needs for intimate sexual relationships and safety while also giving some weight to their prior values.

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 ilemmas for Nursing Homes Related D to Sexual Relationships

With all of the benefits intimate sexual relationships have for nursing home patients with dementia, it might seem that nursing homes would uniformly support them. Actually, the opposite is true. While “sex has become a prominent issue in residential-­care facilities,” [15, p. 304, 11] nursing homes generally choose to stifle sexual expression rather than providing the privacy, acceptance, and policies necessary to support it [3]1; [4].2 From a business standpoint, this choice is a logical one, especially when the residents have dementia. Nursing homes face many risks if they fail to effectively monitor and prevent sexual abuse of the patients residing in their home. This is particularly true with respect to dementia patients because they are especially vulnerable to sexual abuse, and nursing homes, therefore, have an obligation to take special precautions to protect them [11]. Failure to adequately protect patients from sexual abuse can lead to loss of license, fines, and censure [16]. A particularly harsh example occurred in Iowa in 2009. Iowa law requires nursing homes to notify the Department of Inspections and Appeals (Department) of suspected physical or sexual abuse. The staff at Windmill Manor Nursing Home decided not to notify the Department of a sexual relationship between two residents with dementia because there was no evidence of coercion, they “gravitated toward each other,” and the woman was “calmed by the man’s presence” [17]. Despite the rational basis for this judgment call, Windmill Manor was required to pay a fine of $14,500 for failing to report the sexual relationship to the Department, the Iowa Board of Nursing revoked the facility director’s license for failing to adequately care for the patients, and the Iowa Board of Nursing Administrators (Board) charged the facility administrator with professional misconduct. The facility administrator was eventually given a citation and warning rather than a harsher penalty because the Board found that the sex was consensual [17]. Nevertheless, both the facility director and the facility administrator lost their jobs at Windmill Manor. Besides governmental sanctions, nursing homes also face the risk of criminal and tort liability if there is a finding of patient sexual abuse [4]. Most states have criminal statutes that define sexual abuse and rape as including sex with an individual who has “a mental defect or disability” and cannot provide legal consent [2]. Under these statutes, sex between residents with dementia would technically be considered criminal sexual abuse or rape if either person lacked the legal capacity to consent due to his or her cognitive impairments. The nursing homes could also be found criminally liable for encouraging these sexual relationships if they, for instance, provided private rooms for the sexual activities or facilitated the relationships by,

1  Malone states “Existing policies on sexuality in [long-term care] have been heavily criticized in the literature, mainly due to their absence” (p. 34). 2  Spece notes that “nursing homes often discourage ongoing intimate relationships because of logistical, financial, and other considerations” (p. 909).

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for example, helping physically disabled patients climb into bed together [18, 19].3 In addition, nursing homes could be subject to tort liability for determining that a resident with dementia had capacity to consent to sex if that finding was later successfully disputed in court and the nursing home knew the resident was having sexual relations and failed to intervene. This civil liability could be premised on a breach of duty to ensure that those in their care are safe from sexual abuse [11, 18]. Although the likelihood of liability being imposed for supporting residents’ sexual relationships is small [4], the consequences are significant if the nursing home is found culpable. Moreover, as Tarzia, Fetherstonhaugh, and Bauer note, “fear of negative repercussions from the resident’s family may [also] make many facility managers wary of physically intimate activity among residents” [20]. By contrast, there are almost no risks if residents with dementia are simply denied their rights to autonomy and privacy with respect to their intimate relationships. Institutionalized residents with dementia are generally incapable of asserting their own rights [4]. For these reasons, nursing homes have strong incentives to err on the side of protecting patients from sexual abuse rather than protecting and supporting their sexual liberties and freedom [20]. As one commentator wrote, “[w]hile society immediately thinks of protecting the elderly from abuse and exploitation, protecting them from abstinence is not as common a consideration” [15, p. 323]. Even with the best intentions in mind, it is easier and safer to prohibit sexual expression entirely than to enter into nuanced determinations of sexual capacity and consent [11].

8.3

Setting Parameters for Acceptable Sexual Conduct

However, preventing residents with dementia from engaging in any sexual activity is a significant failure of the nursing home’s duty of care. Given the benefits to residents who have intimate sexual relations, nursing homes should do their utmost to support them. The best way to encourage nursing homes to support consensual sexual activity would be to reduce their risks, and the best way to reduce the risks would be to have clearly articulated standards for determining capacity to consent [4].4 If there were clear standards set out in statutes, regulations, or case law, nursing homes could avoid liability while supporting the residents’ autonomy and privacy, allowing them to have satisfying, self-affirming, intimate sexual relationships. Unfortunately, there are no clear standards for determining capacity to consent to intimate sexual relations [11], so until there are appropriate laws, nursing homes must create their own sensible and humane policies [21].5 Perhaps a good starting 3  Lyden notes that individuals with severe disabilities may “require assistance from another person to have sexual intercourse” (p. 18). 4  Spece Jr., Hilton, and Younggren comment that the “[o]ver-blown fear of lawsuits from family members and of criminal liability for encouraging sexual activity that may be interpreted as abuse, influence[] administrator’s judgment” (p. 919). 5  Casta-Kaufteil notes that guiding nursing home policies are essential to ensure that staff and families do not disregard the residents’ sexual preferences.

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point for setting appropriate standards is to address recognizable sexual activities that should be restricted. For example, a nursing home resident’s explicit refusal of, or physical resistance to, a sexual advance should always be respected [4]. These are clear indications that the resident does not want to engage in sexual activity, and residents should be protected from sexual assault and exploitation. Other sexual behaviors that should be proscribed include (1) public acts that negatively affect the other residents in the home, (2) sex that may be physically harmful to the health of a resident, and (3) sexual acts with a resident who is so incapacitated that the risks of the resident engaging in unwanted sex are too high. Inappropriate public behaviors include sexually explicit language, touching or grabbing others without consent, public nudity, exposing genitals, or masturbating in public [11]. All of these behaviors violate social norms and infringe on the rights of other residents not to be disturbed [22]. Some sexual acts are inappropriate because of the physical condition of particularly frail nursing home residents. For instance, a resident with advanced dementia who suffered a recent heart attack or has a high risk of bone fractures may not understand the high risk of negative consequences from engaging in sexual activity [2]. In these cases, the nursing home has an obligation to protect the resident from harm. The nursing home should also protect other patients from physical harm if, for example, a resident with dementia has a sexually transmitted disease and refuses to take reasonable precautions against spreading the disease [22]. There are also residents with dementia who cannot communicate at all due to the dementia itself, a stroke, or other disability, or who are so suggestible that their expressions of consent cannot be considered voluntary [12]. For these patients, the danger of unwanted sex may be so great that an outright prohibition is the only reasonable option. The other end of the spectrum—where sexual relationships ought to be supported—is much harder to pin down. Nursing homes should generally support residents with dementia who are involved in intimate sexual relationships and indicate through words and actions that they look forward to seeing a partner again and enjoy their sexual relationship. Even if residents with dementia lack the ability to orally consent to sexual activity, “facial expression, body language and other external cues,” such as mood before and after the sexual contact, can serve as reliable indicators that the sexual relationship is consensual [4, p. 940]. But there are other considerations that make the determination of whether or not to support a resident with dementia’s sexual activity a difficult one.

8.4

Determining Capacity to Consent

The law restricts non-abusive sexual relationships to those that are consensual. The fundamental problem for nursing homes is determining what consent should entail for those with mental disabilities. This is an important question because “the human need for physical connection, affection, and intimacy is not limited to those capable of expressing [traditional] consent; rather it ‘extends beyond [a person’s] cognitive

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status.’” [4, p.  917]. For this reason, scholarly articles on sex among those with dementia focus on the question of consent. As explained below, devising a comprehensive standard for determining capacity to consent to sexual activity is particularly complex due to the very nature of both dementia and sex.

8.4.1 Wide-Ranging Cognitive Abilities and Sexual Activity People living with dementia are “a widely diverse group, with patients functioning at many different levels of consciousness, and with some shifting back and forth among different levels.” [5, p.  698]. Although dementia generally proceeds along a continuum of progressively decreasing cognitive function, the progression is unpredictable and varies considerably across individuals [5]. Individual patients may also experience varying degrees of cognitive acuity even in a single day. Some patients experience “sundowning” and have diminished capacity at night when they are tired, some have variations in functioning depending on how well they are sleeping or on their medication regimens, and others may be lucid on one day and have limited awareness on another [4, 15]. To complicate matters further, sexual acts have different social and cultural significance. For example, there is more cultural and emotional significance to having sexual intercourse than there is to hugging and caressing. The risks of sexual abuse may also be higher with some partners than with others [19]. Arguably, consenting to acts with higher risks and greater emotional and societal challenges should require more stringent standards of consent than those that are less risky, more socially acceptable, and require less of the patient [19]. A similar gradated approach is applied in treatment settings where there is a somewhat lower capacity threshold if the patient is consenting to a simple, low-risk medical procedure, rather than to a complex procedure requiring a greater understanding of the high risks and potential alternatives [11]. Due to the diversity of sexual activities and the variable cognitive functioning of dementia patients, there is a strong argument for circumstance- and patient-specific standards for determining capacity to consent [15].

8.4.2 Setting a Standard for Consent In the past, some have argued that these difficulties in determining capacity to consent could be overcome by relying on the patients’ animal instincts. This argument rests on the premise that sex is an instinctual human desire and if it gives the patient pleasure, nothing else should matter. This view has been almost uniformly discredited because, as shown below, it fails to take other important considerations into account [18]. Tarzia, Fetherstonhaugh, and Bauer advocate for a “common sense approach” to consent based on observing the patients’ interactions with each other [20, p. 612]. However, while the patients’ interactions are probably the most important indication that sexual activity is consensual, there are other considerations that are essential to

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preventing sexual exploitation and abuse of vulnerable residents with dementia. Not only must a person with dementia be able to express a desire to engage in sexual activity through words or body language, but the individual must also understand the sexual nature of the interaction and that he or she has a right to say no—verbally or nonverbally—at any point [15]. This involves “understand[ing] the concepts of choice and voluntariness” [11, p. 719]. To engage in sexual activity with another person, an individual must also be able to understand a partner’s request to stop and be able to respond to this request by ceasing any further sexual contact [11]. These minimum requirements ensure that the sexual activity is voluntary and remains consensual throughout the interaction. Some scholars recommend that additional requirements be met. Under New York law, an individual must understand the “moral quality” of the interaction to have capacity to consent to sexual acts. According to Martin Lyden, this standard requires that a person “be [mentally] capable of understanding the non-criminal penalties (e.g., ostracism, stigmatization) that society may impose for conduct it labels as sexually immoral” [19, p. 6]. Others have included the following requirements for determining capacity to consent: the individuals involved must be (1) aware of the consequences of their actions [11],6 (2) able to clearly state the type of sexual contact they would be comfortable engaging in [20], and/or (3) competent enough to explain why they want to engage in sexual activity [15]. These requirements seem unduly restrictive in a nursing home setting where caregivers are present to help ensure that nonverbal dementia patients only engage in sexual activities when they indicate that is what they want. Nursing homes can manage stigmatization and ostracism by creating facility-­ wide policies that are supportive of intimate sexual relationships and by training staff to accept the patients’ needs for sexual intimacy [23]. In fact, some nursing homes have already taken these steps; at the forefront is the Hebrew Home at Riverdale. This nursing home has a formal policy that not only acknowledges “the importance of emotional and physical intimacy in the lives of older adults,” including those with dementia, but also labels sexual expression as a right to which residents are entitled [24, p. 2]. The Hebrew Home provides training for its staff that assists them in accepting residents’ sexual expression and compassionately dealing with challenges and concerns. The Hebrew Home also includes family in discussions regarding the patients’ sexual needs and rights [7]. The next proposed requirement, that individuals be aware of the consequences of their actions, refers to the individual’s understanding of potential physical harm, such as pregnancy and sexually transmitted diseases [19, 25], and emotional harm, such as how the person will feel if the relationship ends. With respect to physical harm, pregnancy is generally not an issue in the nursing home setting, and nursing homes are in a position to be aware of any STDs and to take the necessary steps to prevent their spread, such as “providing condoms and sex education to [those] residents … who are able to comprehend it” [20, p. 612]. With respect to emotional 6  Wilkins phrases this requirement as whether “the resident [is] aware of potential physical and emotional harm” (p. 719).

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harm, as Rollo May wrote, “Intimacy requires courage because risk is inescapable. We cannot know how the relationship will affect us” [26, p.  125]. Tarzia, Fetherstonhaugh, and Bauer point out that people with dementia face the same risk of emotional distress from a relationship ending that “any sexually active person faces throughout his or her life” [20, p. 611]. They argue that stifling autonomy on the basis of this potential harm—which is inherent in every sexual relationship— would be a failure of the nursing home’s duty of care [20]. Additionally, dementia patients should not be required to state clearly the type of sexual contact they would be comfortable engaging in or explain why they want to engage in sexual activity. For those with dementia-related communication issues, these requirements may be unduly burdensome [4]. If patients have “sufficient rudimentary knowledge of what [the sexual act] comprises and of its sexual character to enable [them] to decide whether to give or withhold consent” [18, p. 144] and can express through words, gestures, or body language that they want to engage in a particular sexual activity, this should suffice. Thus, capacity to consent standards should require only that the patient (1) indicate through words, signals, body language, and/or mood that he or she wants to engage in sexual activity, (2) understand that the contact is sexual and that he or she has the right to refuse at any point, (3) can avoid exploitation and abuse by expressing or signaling a desire to stop, and (4) can understand and respect a partner’s verbal or nonverbal request to discontinue the sexual activity. Because of residents’ fluctuating cognitive abilities, the nursing home must continually monitor them for “relevant physical, cognitive, and emotional limitations” to ensure that these minimum capacity requirements are met [4, p. 927]. Caregivers should require clearer signs from a resident with dementia when seeking to determine his or her willingness to engage in sexual intercourse with a partner than when the resident is involved in lesser forms of intimacy such as a hug or caress [19]. Given the importance of intimate sexual relationships to some residents living with dementia, any stricter consent requirements would risk inordinately suppressing the autonomy and privacy of the residents and doing more harm than good. The difficulties for frontline health-care workers at nursing homes in making these capacity to consent decisions must also be addressed. Staff must determine the current cognitive abilities of residents with dementia whose mental functioning may vary on a daily basis and who may have dementia-related communication difficulties. Although making these determinations may seem like a herculean task, nursing homes such as the Hebrew Home have implemented staff training and policies to successfully overcome these apparent decision-making hurdles. All staff at the Hebrew Home receive training to ensure that sexual relations among residents with dementia are consensual and safe. When staff have concerns about a resident’s capacity to consent to sexual relations, they contact a registered nurse, social worker, or physician to assist in making an assessment. Based on years of experience, the Hebrew Home maintains that staff assessments are highly reliable, especially because the frontline staff interacts with the residents on a daily basis [23].

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Determining the Role of Patients’ Prior Values

The next question is whether or not it should matter if the dementia patients’ sexual choices are consistent with their prior values and beliefs. Some commentators include understanding the role of values as an element of consent [4], but consent should relate only to the subjective ability of the patient, in the present, to determine whether or not he or she wants to engage in sexual activity and can do so safely. As Boni-Saenz notes, there is a “temporal dimension [to] sexual consent as it is assumed to be contemporaneous with the sexual act it authorizes” [12]. For those residents with advanced dementia, determinations relating to prior values and beliefs can be made by others using a substituted judgment or best interests approach.

8.5.1 Critical Interests and Substituted Judgment When a dementia patient’s prior values conflict with his or her current wishes, Ronald Dworkin and the character theorists favor relying on the values the patient formed when competent [27]. Dworkin divides a patient’s interests into two categories: (1) critical interests, which are those identity-defining values and commitments people voluntarily choose based on their convictions about what makes life meaningful and the “kind of person [they] want to be” [27, p. 70] and (2) experiential interests, which are the things individuals want to do “because [they] like the experience of doing them” [28, p. 201]. Dworkin’s examples of critical interests include having close relationships with one’s children or a successful career, activities that can be challenging and demanding. Experiential interests include “playing softball, perhaps, or cooking or eating well, or watching football, or seeing Casablanca for the twelfth time, or walking in the woods in October …. ,” in other words, activities that are enjoyable simply because it feels good to do them [28, p. 201]. Dworkin explains that “a person must be competent to form critical interests because they require a rational appraisal of the person’s goals and values” [29, p. 461]. Since dementia eventually destroys reason and judgment, dementia patients ultimately lose the ability to form critical interests or annul those interests they created in the past [28]. For this reason, Dworkin argues that when there is a conflict between an incompetent patient’s current desires and his or her past values, the past values or precedent autonomy should control. He bases this conclusion on the right of an individual to control “the overall shape of the kind of life he wants to have led” [28, p. 226]. In other words, past critical interests should be respected because those interests reflect who the individual chose to be—the person’s overall life narrative—rather than the experiential interests or brute desires that matter to the present incompetent person. Dworkin believes “that the power [of the competent person] to control [his] future as an incompetent patient is a precious freedom that our society should go to great lengths to protect” [30, p. 34]. The legal concept of substituted judgment is also based on precedent autonomy. Using substituted judgment, the surrogate decision-maker is required to determine,

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to the best of the surrogate’s ability, what the patient would have decided when competent. To make this determination, the surrogate relies on the patient’s past statements, patterns of behavior, and philosophical, religious, and moral beliefs [31]. Courts have traditionally preferred using substituted judgment, rather than a best interests test, when the patient was formerly competent because this standard best reflects the individual’s established values and goals and, therefore, the patient’s autonomy [23]. Most dementia patients had many years to form their values and goals before becoming incompetent, so surrogate decision-makers should have a wealth of information for determining their former values and beliefs when making decisions on their behalf. But using a substituted judgment standard raises some serious concerns when applied specifically to dementia patients. First, family members are generally chosen as substitute decision-makers and must often make decisions about the medical care an incompetent patient would choose using past “fuzzy comments and ambiguous behavior” [5, p. 632]. Even when surrogates rely on explicit prior statements made by patients about their choices for future medical care, those statements are often ambiguous with respect to the unique medical situation that develops [29]. Family members may also have emotional reasons for believing the patient has values similar to their own, particularly concerning end-of-life care [32, 33]. For these reasons, family members are not particularly accurate in predicting what their relatives would decide based on their prior values and goals. Indeed, a number of studies have shown that surrogates only make the same decisions people would have made for themselves 60–70% of the time [32, p. 576, 34]. A surrogate’s assessment of whether or not a family member with dementia would choose to engage in an intimate sexual relationship is probably even more prone to error than these studies suggest. Sexuality is rarely discussed in familial settings and would be an even more unlikely topic with respect to future sexual preferences in the event of incompetence [18]. Due to this reluctance to discuss sexual topics, families will often lack reliable information to help determine how dementia patients’ prior values should affect their current choices regarding their sex lives. Surrogates may also be unintentionally influenced by the substantial moral, religious, and emotional overtones of sexual relationships. For example, the husband of a patient residing in a nursing home may have an emotional incentive to believe that his wife would prefer not to have an adulterous relationship in her impaired state [23]. Additionally, studies have consistently shown that “the able-bodied, including clinicians, significantly underestimate the quality of life possible after a disability, even when they live with someone with a severe disability” [34, p. 1216]. Those with disabilities often enjoy life in ways those without disabilities never imagined possible [32, 35]. Because patients cannot accurately predict what they will believe or value when they become disabled, there is a strong argument to be made that their precedent values should not control. For example, a competent individual might believe that she never wants to enter into an adulterous relationship, even if she has dementia in

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the future and loses awareness of the fact that she is married. Her belief might be different if she could know the years of loneliness that she would suffer when living in a nursing home and the relief that may come from an intimate sexual relationship [23].

8.5.2 Advance Directives To deal with the shortcomings of substituted judgment, some scholars advocate using advance directives to control decisions concerning an individual’s future sexual relationships [4, 12].7 Advance directives allow individuals to direct their future medical care in the event of incapacity [12].8 Because the directives are in writing, individuals tend to take the time to carefully and deliberately state their wishes. Many people will also seek help drafting their advance directives, which gives potential or current caregivers and others an opportunity to counsel them about the significance of their choices and what those choices might mean for their future [29]. But advance directives have their own serious problems. Rebecca Dresser sets out the three main problems with advance directives: (1) many people do not have advance directives, (2) directives often fail to contain information that can be usefully applied to a specific situation, and (3) those who complete advance directives often do not fully understand the implications of what they are signing [31]. The first problem—that many people do not complete advance directives— applies with special force to sexual advance directives. Sexual advance directives have only recently been proposed, so even those individuals who do complete advance directives are unlikely to include their future sexual preferences. Moreover, even if sexual advance directives were to gain in popularity, individuals would have to express those preferences accurately and completely for them to be effective. Boni-Saenz explains why this is likely to be problematic: In a more sex-negative culture, people will avoid advance planning on matters of sexuality, predict badly what they might want out of their future sexual lives, or be less forthcoming about their sexual desires… [I]n a more sex-positive culture, it is quite possible that an individual will avoid sexual advance planning … or might not predict with accuracy her future sexual desires…. [12, pp. 37–38].

Second, although advance directives may be more precise than the reconstruction of prior goals and values using substituted judgment, they are often not precise enough to be useful. The directives are intended to cover a broad variety of medical 7  Spece, Hilton and Younggren state, “[A] competent resident’s prior directive, if any, that intimacy should not continue should she be incompetent, shall not be disregarded” (p. 931). 8  Boni-Saenz notes that individuals can also choose proxy directives, in which they specify a surrogate to make medical decisions for them should they become incompetent, and hybrid directives “which designate a proxy decisionmaker but also provide written guidance about the principal’s beliefs in varying levels of mandatory language” (p. 12).

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circumstances that may have complex nuances. As Rebecca Dresser points out, these directives are “too vague to guide physicians and families facing most actual patient care dilemmas” [31, p. 1831]. Sexual advance directives might be even more difficult to construct precisely due to the large number and variety of emotional and other dynamics affecting intimate sexual relationships. For example, an individual might specify in an advance directive that she does not want to have an adulterous relationship if she becomes incompetent and resides in a nursing home. In making this decision, she may not realize that, when she has advanced dementia, her spouse may not visit her often because she does not recognize him or her. The spouse may also seek companionship in another relationship because the marriage is no longer mutually supportive. Had the individual known of these potential circumstances when drafting the advance directive, she might have chosen to give her future demented self the opportunity to find the companionship she needs in the nursing home [29]. By their very nature, intimate relationships have other complicating factors. For example, they involve another individual whose needs may matter to the person living with dementia. An individual with dementia may also have premised the sexual advance directive on a spouse’s or other family member’s negative attitudes about future sexual activity, but attitudes may evolve over time. After watching a loved one’s loneliness, family may warm to the idea of an intimate sexual relationship in the nursing home and become supportive of the dementia patient’s sexual relationship, even if it is adulterous. These complicating factors demonstrate only some of the many difficulties in formulating an advance directive that is sufficiently precise to make it useful in determining a person with dementia’s sexual preferences in a specific situation [29]. Third, priorities and values may change when a person becomes disabled. This is as much a problem with advance directives as with substituted judgment. In general, people are not adept at “predicting their preferences in situations they have never experienced” [31, p.  1835]. Competent people imagine how they will face challenges as they are now, not as they will be when they have a disability. With long-term disabling conditions like dementia, patients may find “powerful new interests” that clash with those they held in the past [36]. The President’s Council on Bioethics commented that this problem may result in advance directives that adversely affect incompetent individuals with long-term conditions by permanently binding them to a decision they made at one moment in time. The Council referred to this problem as “the tyranny of th[e] timeless moment” [37, p. 85]. Applying this concept to sexual advance directives, an individual may be relegated to years of loneliness based on an advance directive made with very limited understanding of the impact that directive would have on his future interactions and life satisfaction [31]. These issues demonstrate that advance directives should not be followed literally, especially with respect to sexual relationships. Sexual advance directives can provide valuable guidance regarding an individual’s wishes when competent, but following them verbatim may result in denying some people their opportunity to satisfy their basic human need for intimacy [31].

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8.5.3 Experiential Interests and the Best Interests Test As opposed to Dworkin, Rebecca Dresser and the experiential theorists reject reliance on past values and argue that the incompetent patients’ experiential interests should control, not their critical interests. Dresser believes that because dementia alters memories and personality, patients with advanced dementia essentially become different people, who are entitled to respect in their own right [5]. She relies on a disability perspective to persuasively argue that society owes those with dementia a moral obligation to respect the current experiential preferences that enhance their quality of life [5]. Dresser writes, “the law must [ ] ensure that the present patient does not simply disappear in the shadow of the person she once was. The law must ensure that someone looks carefully at the patient whose fate is now in question” [5, p. 636]. In advancing her position, Dresser emphasizes that focusing on dementia patients’ critical interests and/or advance directives can undervalue their current life and welfare. She explains that relying on precedent autonomy may, in some instances, force caregivers to “sanction the inhumane treatment of people who have lost the capacity to appreciate the forces that drove their earlier choices, but not the capacity to be harmed by those forces” [5, p. 715]. Dresser’s argument is roughly based on a best interests analysis. The best interests test requires surrogate decision-makers to make their decisions based on what would benefit the patient most and cause the least amount of harm. This test is objective and rests on what a reasonable person would likely choose under similar circumstances. It does not take the patient’s individual preferences into account [23]. Dresser refines the best interests test and argues instead for a “revised, [patient-­ centered] best interests” approach that focuses not only on the patients’ experiential welfare but also on a “more thorough and comprehensive” assessment of how dementia patients experience their lives [5, pp. 617, 692]. Dresser’s view has considerable moral weight because, as she points out, people with dementia are human beings with contemporary feelings and needs who are entitled to compassion [5]. Dresser’s view is particularly relevant with respect to intimate sexual relationships among nursing home residents with dementia. As their mental deterioration progresses, dementia patients tend to focus on the present; the past and future often do not exist for them. As their viewpoint shrinks, new interests—such as new relationships—may dominate their thinking. It seems wrong to deny residents with dementia intimate sexual relationships that can improve their physical and mental functioning based on values that are no longer relevant to them [29]. Nothing can change the values and goals that the patient expressed in an advance directive, but something can be done to ensure the patient’s current well-being. However, there are also problems with using a best interests or revised best interests approach. While the best interests test focuses on protecting the patient from pain and suffering and improving quality of life, it is an objective test. There may, of course, be times when the patient’s subjective circumstances are relevant to the analysis because the test requires consideration of the patient’s best interests “under the circumstances,” but the test is still an objective one. As Dresser states,

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“it is impossible to separate the incompetent’s current interests from a more general conception of human beings. The best interests standard is necessarily grounded in shared judgments and values about what matters to persons” [5, p. 658]. It is also very difficult for surrogate decision-makers to remove their own values and beliefs from the decision-making process. Problems of bias are of particular concern when substitute decision-makers are dealing with sexual relations. For example, nursing home administrators might believe having family feel comfortable visiting a patient is more important to the resident’s overall well-being than the patient’s relationship with another resident in the nursing home, but the patient may find the relationship enormously important and satisfying [23]. Surrogate decision-­makers, who are often family members, may also be influenced by their own emotional reactions, particularly when dealing with a close family member’s intimate sexual involvement and especially if there are issues of adultery. In addition, it would be almost impossible for anyone to determine the importance of a personal relationship to another human being, especially if that individual has problems communicating due to dementia [23]. For these reasons, the best interests test robs dementia patients of the little autonomy they may have left. “It elevates the decisionmaker’s assessment above the incompetent resident’s own personal feelings about his life and his future” [23, p.709]. The necessary result is that the incompetent’s liberty is circumscribed, and he is “deprived of respect and dignity” [23, p. 709].

8.5.4 T  he Role of Critical Interests Advocated by Experiential Theorists Another problem with relying only on experiential interests is that sometimes determining the best interests of a patient requires taking the patient’s critical interests into account. Some experiential-approach scholars acknowledge that the patient’s critical interests should play an important role in decision-making in certain circumstances. For example, Tarzia, Fetherstonhaugh, and Bauer write that “[t]he only justification for interfering with a sexual relationship between two residents who appear happy, we suggest, is if one or both residents are not aware of the identity of the other person and believes the person to be someone else (spouse/partner)” [20, p. 612]. They explain that this exception to the general rule is warranted because dementia patients have fluctuating cognitive capacities and may, at some point in time, realize that they have mistaken a sexual partner for a spouse or that they have had sex with a stranger, which may lead to psychological harm due to “feelings of shame and regret” [20, p. 612]. This exception to their general rule of relying on the patient’s experiential happiness is based on the patient’s prior values. In other words, the patient could only feel shame at having a sexual relationship with someone not her spouse, or a total stranger, based on critical interests such as a commitment of fidelity to a spouse or her perception of the person she wants to be, her life narrative. If she was only concerned about her experiential pleasures, her “happiness” during the relationship would be her only concern.

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The fact that Tarzia, Fetherstonhaugh, and Bauer recognize that critical interests may play a part in a surrogate’s decision-making does not undercut their basic premise that the patient’s experiential interests should control. As Dresser states, under the best interests approach, “we do the best we can to stand in the patient’s shoes, to understand the situation as it is for her” [5, p. 665]. If there is a legitimate concern that, due to fluctuating cognition, the patient may suffer psychological distress, the best interests test would require surrogate decision-makers to take that concern into account in determining whether to support a sexual relationship. However, Tarzia, Fetherstonhaugh, and Bauer fail to consider that other critical interests may also cause shame and regret. For example, when competent, a dementia patient may have had strong religious beliefs against adultery or homosexuality, or a strong interest in her life narrative and the memories she leaves behind.9 Her sexual relationships in the nursing home might conflict with these critical interests as well and also cause psychological harm if she remembers these values during periods of greater cognitive clarity. Using the reasoning espoused by Tarzia, Fetherstonhaugh, and Bauer and Dresser, it appears that these critical interests— and perhaps others—should also be taken into account when considering a dementia patient’s intimate sexual relationships if these values conflict with the patient’s current sexual relationship and have the potential to cause psychological harm. Because intimate sexual relationships may be very important to a dementia patient’s well-being, the patient’s experiential interests in satisfying intimate relationships are entitled to great weight. Indeed, some scholars believe that people’s lives have no meaning if they do not have intimate relationships and that the ability to relate is “the defining characteristic of personhood” [38, p. 930, 39]. However, assessing what is in the best interests of the patient may also require consideration of the patient’s critical interests, especially given the fluctuating cognitive abilities of dementia patients.

8.5.5 Balancing Test Although dementia patients’ past values are entitled to some consideration with respect to their intimate sexual relationships, there should be a presumption that nursing homes will support intimate sexual relationships if the dementia patient has the capacity to consent. The patients’ experiential interests are entitled to great weight, especially given the importance of intimate sexual relationships to quality of life. Binding patients to past values deprives them of their current rights to autonomy and dignity. If the dementia patient has fluctuating cognitive abilities, his critical interests should be considered in the best interests analysis only to the extent that they may cause psychological harm resulting from shame or regret.

 See Evelyn M. Tenenbaum, To Be or To Exist: Standards for Deciding Whether Dementia Patients in Nursing Homes Should Engage in Intimacy, Sex, and Adultery, 42 Ind. L. Rev. 675, 714–719 (2009) for a more in-depth discussion of critical values relating to sexual activity.

9

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While prior critical interests should not be given a primary role, there may be strong countervailing considerations for taking the patients’ past values into account and using a substituted judgment approach. For example, some gay men and lesbian women prioritize their religious beliefs over their sexual preferences and live a lifetime in a conventional marriage without disclosing their homosexuality. Dementia may bring these individuals new freedom to express their sexuality, but given their lifetime focus on religion, some consideration should be given to whether a same-­ sex relationship should be supported, especially if the patients’ family and friends continue to visit them in the nursing home [29, 40]. Other considerations may include a dementia patient who had a long, devoted relationship with a spouse and is now having a relationship with another resident in the nursing home. If the spouse is very traumatized by the new relationship, this should also be taken into account. Where substantial considerations such as these exist, it makes sense for the nursing home to consult family, staff, advance directives, and other indications of the patient’s past values and goals to reach a solution [11].10 A test balancing best interests and substituted judgment is not new. Several scholars have suggested approaches using both methods for substitute decision-­ making. As the New Jersey Supreme Court stated, “[t]he substituted-judgment and best interests tests are not dichotomous, but represent points on a continuum of subjective and objective information leading to a reliable decision that gives as much weight as possible to the right of self-determination” [41, pp. 167–168]. While this chapter also advocates considering both critical and experiential interests, it suggests placing substantially more weight on the dementia patients’ current interests and only relying on critical interests when there are very strong countervailing concerns.

8.6

When No Assessment of Critical Interests Is Necessary

There will be many instances when there is no need to deal with a conflict between a patients’ current and prior values. Agnieszka Jaworska claims that Dworkin— who focuses on the critical interests of the former individual—and Dresser—who focuses on the experiential interests of the current self—are mistaken. She points out that many patients are capable of some complex thought even in the advanced stages of dementia, and argues that as long as patients understand what is of value to them, their interests should be respected [23]. Jaworska’s position is based on a functional competence approach. Most courts no longer limit their decisions to determining that patients are globally incompetent. Instead, they assess functional competence, which allows them to determine that the patient is competent in some areas and incompetent in others. In those areas where the patient is competent, he should be given the autonomy to make his own choices.  Wilkins suggests “a committee approach [that] can be utilized where residents, the nursing home, and family members can convene to advocate for residents’ autonomy, dignity, and right to sexual expression while working to minimize harm.”

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This should also be true regarding intimate sexual relationships. If the dementia patient has the competence to take his critical interests into account when deciding to enter into an intimate sexual relationship, he should be able to make that choice himself [23]. Similarly, if the patient’s experiential and critical interests align, there is no need to analyze which should take precedence. As Dresser points out, “[h]appily, decisionmakers will not often face a clear conflict between the treatment alternative that seems most consistent with the patient’s former competent preferences and the choice that seems best for her now” [5, p. 716]. In many cases, dementia patients’ sexual preferences may also align with their prior critical interests. If the patient’s critical interests and experiential interests align, the patient’s valid consent to sexual activity, using the criteria set forth above, should be sufficient for the nursing home to support an intimate sexual relationship.

8.7

Outlining the Steps in Determining Consent

The steps in deciding whether or not an intimate sexual relationship between dementia patients should be supported by a nursing home are set out in the flow chart (see Fig. 8.1). First, the nursing home should ensure that the sexual activity is not harmful to the patient or others residing in the home. That would include stopping sexual activity that is public and disturbs others or that is dangerous to the patient or the patient’s partners. Patients, themselves, should also be protected if they indicate they do not want to engage in sexual activity or if they are so incapacitated, they cannot voluntarily consent to, or refuse, a sexual advance. If there would be no harm to the patient or others from a sexual relationship, the nursing home should next determine if the dementia patient has the capacity to consent. This would include determining whether or not the patient wants a sexual relationship, can communicate a request to stop sexual activity and understands that he or she can refuse at any point, and can understand and respect a partner’s request to stop. If these conditions are met, the patient should be found to have the capacity to consent. If the patient has the capacity to consent, but there is a conflict between a dementia patient’s prior critical interests and the patient’s current desire for an intimate sexual relationship, the nursing home should balance the value of the intimate sexual relationship to the patient against the critical interests involved. Because of the central importance of intimacy to many patients’ physical and emotional health and well-being, nursing homes should presume that the patient’s current desire for the relationship outweighs any conflicting critical interests. Only when there are very strong countervailing reasons for limiting the patient’s experiential interests in a satisfying intimate sexual relationship should the critical interests control. The tests set out in this chapter heavily favor allowing patients the freedom—to the extent possible—to have intimate sexual relationships. The most compassionate

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If YES

• Sexual activity is performed in public, contrary to social mores, or • Sexual activity is dangerous due to frail patient’s health, or • Patient is so suggestible cannot voluntarily consent, or • Patient clearly indicates does not want sexual activity.

If NO

Patient (1) indicates wants sexual activity, and (2) understands can refuse at any point, and (3) can exercise right to refuse, and (4) can understand and respect partner’s refusal.

Nursing Home should support sexual relationship

149

If NO

If NO

If YES

There is a conflict between patient’s prior values and current sexual activity.

If YES

Balancing Test – The value of the intimate sexual relationship outweighs the critical interest involved. Presumption in favor of intimate sexual relationship.

If YES If NO Nursing home should support the relationship.

Only in limited circumstances where there are very srong critical interests.

Fig. 8.1  Decision flow chart for dementia patients who lack capacity to consent

decisions will be reached by recognizing the importance of intimacy and sex to life satisfaction, not only for competent adults but also for those with dementia. As Victor Hugo wrote, “The supreme happiness of life is the conviction that one is loved” [42]. This statement also holds true for many of those with dementia. The most humane decisions can only be reached by treating the individual living with dementia as a whole person and respecting not only the values and goals they once had, but most importantly what they need now.

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Acknowledgment  A special thanks to my fantastic, creative, and reliable research assistant Emily Gray.

References 1. World Health Organization. Sexual health. 2019. Retrieved from https://www.who.int/ health-­topics/sexual-­health#tab=tab_1 2. Foxx J. Dementia sex culture: out with the old, in with the new. J Ame Acad Matrimon Lawy. 2016;29:187–219. 3. Malone M. “All Power to Them”: exploring perspectives and experiences of intimacy and sexuality among older long-term care residents (Unpublished master’s thesis). Dalhousie University, Halfax, Nova Scotia. 2016. 4. Spece RG Jr, Hilton JK, Younggren JN. (Implicit) consent to intimacy. Indiana Law Rev. 2017;50:907–42. 5. Dresser R. Missing perceptions of incompetent patients. Rutgers Law Rev. 1994;46:609–719. 6. Miles SH, Parker K.  Sexuality in the nursing home: iatrogenic loneliness. Generations. 1999;23:36–43. 7. Mattiasson A, Hemberg M. Intimacy – meeting needs and respecting privacy in the care of elderly people: what is a good moral attitude on the part of the nurse-carer? Nurs Ethics. 1998;5:527–34. 8. Bentrott MD, Magrett JA. Taking a person-centered approach to understanding sexual expression among long-term care residents: theoretical perspectives and research challenges. Ageing Int. 2011;36:401–17. 9. National Center for Health Statistics. Long-term care providers and services users in the United States (DHHS Publication No. 2019–1427). Washington DC: U.S.  Government Printing Office; 2019. 10. Joy M, Weiss KJ. Consent for intimacy among persons with neurocognitive impairment. J Am Acad Psychol Law. 2018;46(3):286–94. 11. Wilkins JM. More than capacity: alternatives for sexual decision making for individuals with dementia. The Gerontologists. 2015;55(5):716–23. 12. Boni-Saenz. Sexual advance directives. Alabama Law Rev. 2016;68:1–47. 13. Doll GA.  Sexuality and long-term care: understanding and supporting the needs of older adults. Baltimore: Health Profession Press; 2012. 14. Pellegrino ED. Toward a reconstruction of medical morality. Am J Bioeth. 2006;6(1):65–71. 15. Lindsay JR. The need for more specific legislation in sexual consent capacity assessments for nursing home residents: how grandpa got his groove back. J Legal Med. 2010;31:303–23. 16. Hill E. We’ll always have Shady Pines: surrogate decision-making tools for preserving sexual autonomy in elderly nursing home residents. William & Mary J Race Gend Soc Just. 2014;20:469–90. 17. Gruley B.  Boomer sex with dementia foreshadowed in nursing home. BloombergBusiness. July 22, 2013. Retrieved from https://www.bloomberg.com/. 18. Bartlett P. Sex, dementia, capacity and care homes. Liverpool Law Rev. 2010;31:137–54. 19. Lyden M. Assessment of sexual consent capacity. Sex Disabil. 2007;25:3–20. 20. Tarzia L, Fetherstonhaugh D, Bauer M. Dementia, sexuality and consent in residential aged care facilities. J Med Ethics. 2012;38:609–13. 21. Casta-Kaufteil A.  The old and the restless: mediating rights for intimacy for nursing home residents with cognitive impairments. J. Med Law. 2004;8:69–86. 22. Cornelison LJ, Doll GM. Management of sexual expression in long-term care: Ombudsmen’s perspectives. The Gerontologist. 2012;53(5):780–9. 23. Tenenbaum EM. To be or to exist: standards for deciding whether dementia patients in nursing homes should engage in intimacy, sex and adultery. Indiana Law Rev. 2009;42:675–720.

8  Assessing Consent to Intimate Sexual Relations Among Nursing Home Residents…

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24. Dessel R, Ramirez M. Policies and procedures concerning sexual expression at the Hebrew Home at Riverdale. Riverdale: The Hebrew Home at Riverdale; 2013. 25. Chin NM.  Group homes as sex police and the role of the Olmstead integration mandate. New York University Review of Law and Social Change. 2018;42:379–450. 26. May R. The courage to create. New York: W.W. Norton & Company; 1994. 27. Koppelman ER. Dementia and dignity: towards a new method of surrogate decision making. J Med Philos. 2002;27:65–85. 28. Dworkin RM. Life’s dominion: an argument about abortion, euthanasia, and individual freedom. New York: Alfred A. Knof, Inc.; 1993. 29. Tenenbaum EM. Sexual expression and intimacy between nursing home residents with dementia: balancing the current interests and prior values of heterosexual and LGBT residents. Temp Polit Civil Rights Law Rev. 2012;21:459–84. 30. Dresser R.  Dworkin on dementia: elegant theory, questionable policy. Hast Cent Rep. 1995;25(6):32–8. 31. Dresser R. Precommitment: a misguided strategy for securing death with dignity. Texas Law Rev. 2003;81:1823–47. 32. Coombs M. Shiavo: the road not taken. Univ Miami Law Rev. 2007;61(3):539–94. 33. Kayser-Jones J, Kapp MB. Advocacy for the mentally impaired elderly: a case study analysis. Am J Law Med. 1989;14(4):353–76. 34. Kothari S, Kirschner K. Decision-making capacity after TBI: clinical assessment and ethical implications. In: Zasler ND, Katz DI, Zafonte RD, editors. Brain injury medicine: principles and practice. New York: Demos; 2007. p. 1205–22. 35. Barnes AP. Beyond guardianship reform: a reevaluation of autonomy and beneficence for a system of principled decision-making in long term care. Emory Law Rev. 1992;41:633–760. 36. Jaworska A. Advance directives and substitute decision-making. 2009. Retrieved from https:// plato.stanford.edu/entries/advance-­directives/ 37. The President’s Council on Bioethics. Taking care: ethical caregiving in our aging society. Washington, DC: Author; 2005. 38. Quinn KP. The best interests of incompetent patients: the capacity for interpersonal relationships as a standard for decisionmaking. Calif Law Rev. 1988;76:897–937. 39. Harvey M. Advance directives and the severely demented. J Med Philos. 2006;31(1):47–64. 40. Swartz M. Living the good lie. The New York Times Magazine. June 16, 2011. Retrieved from: https://www.nytimes.com. 41. In Re M.R., 135 N.J 155 (N.J. 1994). 42. Hugo V. Les misérables (Fahnestock L, MacAfee N, Trans). New York: Signet Classics; 1987.

Part III International Perspectives

9

Defining Dementia Care Standards When Cultural Safety is at Stake: The Case of Indigenous Canadians with Dementia Frances Bottenberg

Contents 9.1  Introduction 9.2  Cultural Safety: A Concept for Decolonizing Health Care 9.3  Negotiating Interculturally Contrastive Explanatory Models of Dementia 9.4  Bridging the Interpretive Gap in Indigenous Health-Care Rights 9.5  Improving Indigenous Dementia Care in Light of Cultural Safety 9.6  Conclusion References

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Abstract

Improving dementia knowledge and support among Canada’s Indigenous communities faces a host of intertwined ethical, epistemic, and logistical challenges. These challenges include distrust among Indigenous people of mainstream health care owing to traumatic colonial histories and ongoing social marginalization, as well as a lack of culturally appropriate prevention and diagnosis protocols, and divergent Indigenous and mainstream explanations of dementia and its meaning in human life. This chapter examines these challenges in light of debates that concern intercultural training in nursing and other health-care contexts, the creation of culturally appropriate care, and the value of cultural safety as a critical concept for decolonizing health-care access.

F. Bottenberg (*) Philosophy Department, University of North Carolina Greensboro, Greensboro, NC, USA e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_9

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Introduction

This chapter will examine the intercultural conversation currently unfolding in Canada regarding best practices for diagnosing, treating, and supporting Indigenous people with dementia and their communities, with a focus on how the emerging concept of cultural safety is being deployed in that conversation.1 Alzheimer’s disease and related dementias (ADRD) are on the rise among Canadian Indigenous populations, yet mainstream approaches to dementia education, prevention, treatment, and support are less than ideal for Indigenous individuals and their communities [2, 3]. For one thing, engagement between the Canadian health-care system and Indigenous people remains politically, morally, and epistemically fraught following the extensive history of violence and ongoing social marginalization perpetuated against Canada’s Aboriginal peoples by colonial settlers and their descendants [4– 7]. As a result, Indigenous Canadians report feeling suspicious of mainstream health care and sense that they do not have access to the same quality care and resources regarding dementia that non-Indigenous citizens do ([8, p. 48]; cf. [9]). Additionally, some Indigenous caregivers looking after a family member with dementia report a lack of information on dementia from readily available sources, such as local communities and health-care providers, pushing them to self-educate ([10, p. 124]; cf. [11, 12]). Finally, given high rates of diabetes, hypertension, and depression among Indigenous populations, dementia may appear “last on the list” of Indigenous health priorities [10, p. 122]. It seems clear that the Canadian health-care system and its providers must adapt to better serve Indigenous people with dementia and their communities, but how ought such adaptations be respectfully and effectively conducted? This chapter shows why the critical concept of cultural safety, an emerging principle in interculturalism, critical Indigenous studies, and health-care education, should be called upon to help answer this question. To this end, the first part of the chapter introduces the concept of cultural safety, distinguishing it from deceptively similar-sounding terms like “cultural sensitivity” or “cultural humility.” Following this, I explore the relevance of cultural safety to Indigenous dementia care in Canada, highlighting the challenges posed by interculturally contrastive understandings of dementia. I then link these issues to a fundamental interpretive lacuna that troubles Indigenous health-care rights discourse more broadly, as evidenced in the UN Declaration on the Rights of Indigenous Peoples. Here, too, I aim to show how cultural safety helps clarify the epistemic and moral issues at stake. The remainder of the chapter considers ways to improve dementia care for Indigenous populations living in 1  This chapter uses “Indigenous” and “Aboriginal” Canadian to refer to all persons of Indigenous ancestry in Canada. In Canada, further distinctions are drawn between First Nations, Inuit and Métis people. Not unproblematically, all of these terms imply the existence of homogenous ethnic or cultural identities which do not in fact exist: there are at least 52 major Indigenous cultural groups and over 50 different Indigenous languages in Canada. 50% of Indigenous Canadians live in urban centers, and the remaining 50% live on Reserves, of which there are 615 [1].

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Canada and elsewhere. Some promising developments and key challenges are considered in relation to embracing cultural safety as a foundational principle in Indigenous health care.

9.2

Cultural Safety: A Concept for Decolonizing Health Care

The concept of cultural safety was first coined in 1990 by Irihapeti Ramsden, a Maori nurse [13, 14]. The Nursing Council of New Zealand made cultural safety training a requirement for nursing education in 1992, envisioning it to play a role in “the delivery of quality care through changes in thinking about power relationships and patients’ rights” [15]. Based on literature review and their own recommendations, Curtis et  al. [16, p.  14] offer the following extended definition of cultural safety: Cultural safety requires healthcare professionals and their associated healthcare organisations to examine themselves and the potential impact of their own culture on clinical interactions and healthcare service delivery. This requires individual healthcare professionals and healthcare organisations to acknowledge and address their own biases, attitudes, assumptions, stereotypes, prejudices, structures and characteristics that may affect the quality of care provided. In doing so, cultural safety encompasses a critical consciousness where healthcare professionals and healthcare organisations engage in ongoing self-reflection and self-awareness and hold themselves accountable for providing culturally safe care, as defined by the patient and their communities, and as measured through progress towards achieving health equity. Cultural safety requires healthcare professionals and their associated healthcare organisations to influence healthcare to reduce bias and achieve equity within the workforce and working environment.

Cultural safety is particularly relevant in the context of intercultural relations with Indigenous peoples because of the nearly ubiquitous histories of racialized violence, stigmatization and political marginalization Indigenous peoples have faced in the wake of colonialism and cultural expansionism, particularly by European nations. In many cases, the wounds left by these histories are not healed—the struggle for cultural recognition and political equity continue, perpetuating a legacy of threat and mistrust. In the context of health care, the concept of cultural safety expresses the importance of enabling Indigenous people to self- or codetermine the ways in which they experience and access mainstream health-care resources to lessen feelings of mistrust and increase agency. Ramsden [14, p. 6] emphasizes the key role that interpersonal trust plays in health-care relationships: However difference is expressed, whether by gender, sexuality, social class, occupational group, generation, ethnicity or a grand combination of variables, difference is acknowledged as legitimate and the nurse is seen as having the primary responsibility to establish trust. […] Cultural Safety is a mechanism which allows the recipient of care to say whether or not the service is safe for them to approach and use. Safety is a subjective word deliberately chosen to give the power to the [care] consumer.

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Theorizing health-care solutions with reference to cultural safety thus creates opportunities to recognize power imbalances inherent in present-day relations between mainstream providers and Indigenous care receivers, and to collaboratively reimagine research, clinical, and public health methodologies to help ameliorate these imbalances [17, pp. 5–6]. While cultural safety is an emerging term in health-care literature internationally, it has received most attention so far in New Zealand, Canada, and Australia, particularly among researchers, nursing educators, and practitioners who work on Indigenous health issues. Gradually, though, its use is moving beyond nursing into social work literature and other social sciences and humanities, where well-­ established terms in the intercultural competence literature, such as “cultural awareness,” “cultural sensitivity,” “cultural competency,” and “cultural humility,” have been very influential. Yet these terms place a different emphasis than does cultural safety, which is worth highlighting. Essentially, the established interculturalist vocabulary focuses on the need for cultural “outsiders” to build various skills, knowledge bases, and virtues if they wish to responsibly navigate intercultural scenarios. By contrast, cultural safety prioritizes the political and epistemic empowerment of marginalized care-receivers— particularly of Indigenous backgrounds, who are the cultural “insiders” in this context. It defends not only their right to access mainstream health care, but also their right to shape the context and manner in which they receive care (cf. [18, 19]). The concept thus makes a valuable contribution to discourses concerning intercultural health-care provision. As explained by the Aboriginal Nurses Association of Canada (ANAC) [20, p. 2]: Cultural safety takes us beyond cultural awareness and the acknowledgement of difference. It surpasses cultural sensitivity, which recognizes the importance of respecting difference. Cultural safety helps us to understand the limitations of cultural competence, which focuses on the skills, knowledge, and attitudes of practitioners. Cultural safety is predicated on understanding power differentials inherent in health service delivery and redressing these inequities through educational processes.

According to ANAC, while the principle of cultural safety aims to shift focus from care providers, addressing inequalities should also help providers not only improve care access and outcomes for patients but also “expose the social, political, and historical contexts of health care” and “challenge unequal power relations” (Ibid.). Thus, the concept of cultural safety stands poised to have a great impact on health-care systems and practices internationally, if its distinctive contribution to interculturalism is understood and preserved. However, research suggests that work must be done to ensure this distinction is grasped and effectively deployed. The emerging literature on Indigenous health standards in Canada clearly values adopting cultural safety as a grounding methodological concept in both research and clinical work, yet there remains evidence of conflation between cultural sensitivity, or respecting cultural differences, cultural awareness, or being aware of a culture’s

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histories and practices, and cultural safety. For example, after remarking that “elements of cultural safety also permeate the dementia experience for caregivers,” Bourassa et al. [10, p. 124] conclude that “These findings, along with the work of others, suggest that educational information and programs for Indigenous people must be grounded in cultural knowledge.” The implication is that the accommodation of cultural knowledge, or culturally appropriate and relevant practices and ideas, in health-care practices is sufficient to produce cultural safety. This interpretation of cultural safety, however, risks obscuring the distinguishing element the concept offers in defending the right of historically disempowered peoples to feel safe when entering health-care relationships. Bourassa et  al. [10, p.  125] further identify cultural safety with “Providing culturally relevant services in a safe, compassionate manner,” which seems more readily in line with the interpersonally transformative intent of the concept. Cultural safety, in other words, is not something that will automatically occur when “outsiders” bring acquired competencies such as cultural knowledge and awareness to bear in health-care interactions. As Curtis et al. [16, pp. 13–14] remark: An approach to cultural competency that focuses on acquiring knowledge, skills and attitudes is problematic because it suggests that competency can be fully achieved through this static process. Cultural competency does not have an endpoint, and a “tick-box” approach may well lull practitioners into a falsely confident space. These dangers underscore the importance of framing cultural safety as an ongoing and reflective process, focused on ‘critical consciousness.’

There is hence some potential for eliding cultural safety with particular virtues and skills associated with intercultural competence, shifting its apparent value to the side of health-care providers working with Indigenous patients, rather than preserving it as a liberatory principle (cf. [21]). As Brascoupé and Waters [22, p.  10] emphasize: … cultural safety is not merely another step on a linear continuum, but rather a more dramatic change of approach [… that] represents a more radical, politicized understanding of cultural consideration, effectively rejecting the more limited culturally competent approach for one based not on knowledge but rather on power.

For these reasons, cultural safety must be kept conceptually and practically distinct from any particular competencies. Interculturally competent health-care providers should hence not disseminate information about dementia to Indigenous populations under the banner of cultural safety, as this misses the point and still easily reinscribes existing, disempowering narratives of prejudice and paternalism into health-care practice. The following section will consider the distinctive mediating role cultural safety can play with respect to concrete challenges facing Indigenous dementia care. It will do so by focusing on the challenge of navigating differing understandings of dementia across Indigenous and mainstream populations.

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 egotiating Interculturally Contrastive Explanatory N Models of Dementia

An explanatory model is a technical concept used to denote the existence of a relatively cohesive and distinctive understanding of a given topic. Explanatory models are common in the context of understanding health and disease and may vary greatly across individuals and groups, influencing how symptoms, treatments, and prognoses are interpreted (cf. [23]). By the same token, explanatory models concerning dementia are more than mere theoretical constructs— they carry practical implications that directly affect how persons living with dementia view themselves and how they are experienced, viewed, and treated by their families and communities. For instance, the mainstream neuromedical model—widely accepted among the general Canadian public—classifies dementia as a family of cognitive and behavioral symptoms caused by Alzheimer’s disease or related neurodegenerative disorders. According to this explanatory model, dementia is not a natural or normal part of aging, but a pathology. As a result, those diagnosed with ADRD are defined as “patients.” However, some explanatory models of dementia embraced by Canadian Aboriginal populations differ significantly from the neuromedical view. For example, a significant number of Indigenous Canadians see dementia as a natural or normal phenomenon of old age, or even an expected stage of elderhood [10, p. 120]. Such a view encourages maintaining a holistic view of a person’s life, even after symptom onset. Several questions are worth raising at this point, including: How great are the differences between these competing explanatory models? Are their practical upshots irreconcilable? Should one model be foregrounded over the other in Indigenous health-care contexts? If so, on what grounds? If not, how should their complementarity be negotiated and articulated? These questions shall be considered in what follows. First, to better understand the contrasts between these models, closer examination of each model is required. Beginning with the neuromedical model, dementia is understood as a host of symptoms tied to underlying neurodegenerative disorders, in which brain cells stop working or die at abnormal rates. This model, which mainstream medical science endorses as the most accurate model for understanding ADRD, classifies distinct neurodegenerative conditions based on neurophysiological events in the brain. Alzheimer’s disease, for instance, the most common and well-studied form of dementia, is associated with abnormal buildup of amyloid proteins, which clump into plaques and tangles between brain cells and tau proteins, which form tangles inside brain cells. Both events damage the ability of neurons to effectively communicate with one another. Though no known cures for Alzheimer’s disease and related dementias currently exist, mainstream medical science recommends avoiding known risk factors, such as smoking, and adopting prevention strategies, such as regular exercise, to lower the risk of abnormal neuronal degeneration [24–26]. These healthy lifestyle strategies are believed to slow the progress of the disease and lessen the negative impact of its symptoms.

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As noted above, the biomedical explanation positions dementia not as a normal or natural part of aging, but as linked to clinically diagnosable neurological disorders. One practical impact of this understanding is that people medically diagnosed with dementia become permanently pathologized subjects, as no cure is known. In effect, a medical diagnosis of ADRD easily leads to a person being stigmatized as living with an incurable and debilitating illness—which in contemporary mainstream culture is read as tragic and off-putting. As one individual diagnosed with Alzheimer’s disease explains [27, p. 695]: People didn’t know how to talk to me even though I was the same person I was five minutes before I told them I had it. They just saw this big A on my forehead. They didn’t look at me as the same person—I was stupid, or couldn’t carry a conversation, or have a single thought of my own, which was very distressing to me.

Turning to explanatory models of dementia prevalent in Canadian Indigenous communities, it is first worth noting that ADRD is considered an “emerging” disease for these populations [11, 28]. This is to be understood in two senses: first, there is relatively scarce data on its prevalence in Indigenous populations, but the extant data show historically lower ADRD rates among Aboriginal populations than the general average and rising rates of ADRD today [29]. Remarks such as “Indians don’t get Alzheimer’s Disease,” as claimed by an Indigenous person at a dementia resource meeting, may reveal a fairly common resulting perspective among Indigenous individuals [8, p. 46]. Such a view is consistent with two possible cases, both plausibly supported by existing research: either that Alzheimer’s disease has in fact been less common in Canadian Indigenous populations, or that its symptoms were traditionally not recognized as such. Regarding the latter possibility, ADRD is also an “emerging” disease in a more complicated sense. As Jacklin remarks, Indigenous people are “in the process of negotiating the meaning of the illness in relation to their traditional understandings and biomedical understandings—they are formulating their explanatory model” [1, slide 7]. This process of negotiation among potentially competing explanatory models may not be particular to ADRD. What is perhaps special to the case of ADRD is how strikingly different (though not necessarily opposite) some Indigenous explanations are from the biomedical explanation. Two Indigenous explanations highlight this contrast particularly well. The first has already been hinted at: In Canadian Indigenous communities, dementia—which is referenced mainly as “memory loss”—is sometimes explained as an inevitable consequence of old age. This prevalent Indigenous perspective folds dementia into the more holistic vision of human life that characterizes many traditional Indigenous philosophies of health [30]. One practical impact of this view is that someone with dementia symptoms is not primarily perceived and treated as a pathologized subject, but rather, as an elder in the family or wider community, who happens to have increasing needs [31]. Some Indigenous cultures in Canada in fact consider old age a sacred time when a person comes “full circle.” As such, preparing to exit the world of the living and enter the ancestral spirit world is a process that

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takes time and may involve undergoing behavioral, cognitive, and emotional changes [32]. The gradually decreasing ability to navigate the everyday world exhibited by an elder with dementia could then be seen as evidence of their increasing connection to a nonmaterial realm. Interpreting dementia as part of an enabling process for spiritual ripening stands in striking contrast to the mainstream view, which treats it merely as a disabling process. Regardless of whether this overtly metaphysical variation is taken up in a particular household or community, Canadian Indigenous populations traditionally tend toward strong intergenerational values that lead younger generations to expect that they will one day “return the favor” of caregiving that the older generations bestowed upon them as children (cf. [33]). Collective and familial bonds are reinforced as a way to honor cross-generational affections and care-obligations into elderhood. Family caregiving remains the norm among Canadian Indigenous communities (cf. [34, 35]). What is more, interviews with Aboriginal individuals who are active, full-time caregivers for one or more parent or older relative with ADRD suggest that cultural values make it nearly impossible to imagine “shipping Mom off”—as they consider this a betrayal of not only their loved one’s trust and preferences, but also of the familial relationship itself [32]. Despite a common understanding among Canadian Indigenous communities of dementia as a natural or even sacred old-age phenomenon, it is worth noting that not all Indigenous people with dementia and their caregivers are automatically accepted by their wider communities. Some Indigenous family caregivers report that they and their family member with dementia face communal stigmatization and social isolation resulting from a lack of understanding regarding dementia symptoms, particularly as they become more severe. They also report recognizing a need to educate themselves on the neuromedical model of dementia due to a lack of background knowledge, for their own sake and that of their loved one [10, pp. 117–119]. There is a distinct explanatory model of dementia sometimes represented in Indigenous communities that stands in contrast to viewing dementia as part of normal old age. This explanation is anti-colonial in essence, placing blame for the emergence of dementia among Indigenous elders on colonialism and its acts of mass displacement, genocide, and cultural oppression against Indigenous peoples. The geographical and cultural disruptions caused by these acts led, as Pace et al. [7, p. 102] report, to the “relinquishment of traditional lifeways, in which people lived in extended family groups, seniors had clearly defined roles, and intergenerational closeness and cultural continuity were greater.” In this competing Indigenous explanatory model, these losses are posited as causal factors in the contemporary rise in dementia among Indigenous seniors. It is clear that differences in explanatory models can lead to clashing perspectives on the nature and meaning of dementia, as well as on ideal care conditions for helping individuals navigate the progressively debilitating effects of ADRD. If the neuromedical model is considered by mainstream medicine to enable the highest standard of care for those living with dementia, it could be argued that care providers have an obligation to dispel contrastive explanations for ADRD. Here is where

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the decolonizing principle of cultural safety is needed to issue challenge to this action. Medical professionals may feel they have a clear prerogative to ignore explanations for dementia prevalent among Indigenous people in Canada, to supplant these with neuroscience-based theory and to unilaterally introduce quality of care monitoring mechanisms based on mainstream care standards. Such an argument relies on a ceteris paribus clause, however, and taking cultural safety as a critical principle in this context reminds one that all things are not equal, owing to the systematic historical and contemporary disempowerment of Indigenous nations and people. Indigenous rights connected to pursuing traditional health practices and beliefs cannot simply be ignored or supplanted by the mainstream conception. Indeed, as stipulated in the UN Declaration on the Rights of Indigenous Peoples, such actions would constitute rights violations. The following section will aim to shed more light on the seeming dilemma at issue here: If explanatory models of a disease contrast across Indigenous and mainstream cultures in ways that affect care and prognosis, which model should be prioritized in cross-cultural health-care interactions? Examining the UN Declaration concerning Indigenous rights will open up that discussion.

9.4

 ridging the Interpretive Gap in Indigenous B Health-Care Rights

The United Nations Declaration on the Rights of Indigenous Peoples was adopted by the United Nations General Assembly on September 13, 2007 as the most comprehensive international statement on the rights of Indigenous peoples currently in existence. The Declaration aims to establish “a universal framework of minimum standards for the survival, dignity and well-being of the Indigenous peoples of the world” [36]. Article 24 focuses on Indigenous health-care rights: 1. Indigenous peoples have the right to their traditional medicines and to maintain their health practices, including the conservation of their vital medicinal plants, animals, and minerals. Indigenous individuals also have the right to access, without any discrimination, to all social and health services. 2. Indigenous individuals have an equal right to the enjoyment of the highest attainable standard of physical and mental health. States shall take the necessary steps with a view to achieving progressively the full realization of this right. Within Article 24.1, at least three distinct rights can be teased out: 1. The right of Indigenous peoples to draw on their own culture’s medicines and practices to meet their health needs. 2. The right of Indigenous peoples to conserve and protect their culture’s medicinal resources (or to have these resources conserved or protected—the conservation clause is ambiguous).

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3. The right of Indigenous peoples to access all social and health services without being discriminated against because of their indigeneity (as opposed to some other reason—this seems implied). Within Article 24.2, at least two distinct rights are implied: 4. The right of Indigenous peoples to access health-care resources designed to promote the highest attainable standard of physical and mental health. 5. The right of Indigenous peoples to the highest attainable standard of physical and mental health. Let us assume that these five distinct health-care rights are indeed stated or implied in Articles 24.1 and 24.2. Each is laudable for the political and epistemic protections and freedoms it establishes. Interestingly, however, closer consideration of this set of rights sets them at potential odds with one another. For example, (1) and (2) support the use of and continued access to traditional medicines and health practices, while (3) implicitly supports use of medicines and health practices associated with mainstream, non-Indigenous culture. In theory, this maximizes the pool of health resources available to Indigenous patients. What is, however, noticeably missing is a clause that supports fair and accurate knowledge mediation between traditional Indigenous and mainstream health care. Two examples can help illustrate the point. For instance, if mainstream pharmaceutical research were to show a compound traditionally used in a particular Indigenous healing practice to be ineffective or even harmful without benefit, would the Canadian health-care authorities have a duty to share this knowledge with the relevant practitioners of traditional Indigenous medicine? Should the right to use that compound as a medicine nevertheless persist? Is there a political duty to respect even a harmful practice because it is culturally protected? Alternatively, one can imagine that a particular service provided by a federal or state health organization is, as it is practiced, understood, or explained for the general Canadian public, culturally foreign to a particular Indigenous person, and as a result their access to that service is impeded. Would this constitute a violation of (3) or potentially even (4) and (5), if this theoretical service offers a key resource proven to support the “highest attainable standard of physical and mental health”? Does the Canadian health-­ care system have a duty in that case to tailor its approach to Indigenous health-care consumers, who represent many diverse cultures and interests? With no clause that supports the right to access accurate, comprehensive information regarding health-care options in a culturally safe manner, (1) through (5) are question-begging. The underlying controversial assumption is that competing health-care choices will sort themselves out in practice, leading Indigenous people to make health-care choices that are “right for them,” assuming they are permitted to make their own choices. More to the point, the controversy lies not in the idea that Indigenous people should be permitted to shape their own healthcare experiences—that being the most important and fundamental right to defend—but rather that it shows a blindness to the facets of colonial power that remain entrenched in the relationships Indigenous people have toward

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mainstream health-knowledge resources, specialized medical judgment, and treatments, because of continued political and epistemic inequities. This is not to mention the potential mistrust felt by Indigenous people toward mainstream providers. The stipulated rights also imply that there are “right” choices to be made in respect to one’s health—namely those which lead to the “highest attainable standard of physical and mental health.” Yet, key questions remain unaddressed: What makes that standard the “highest attainable”? Who has the moral and epistemic authority to define it as such? It is here that cultural safety constructively enters the picture, issuing a critical shift of focus first and foremost to creating ways for Indigenous health-care consumers to access credible and comprehensive, yet also culturally relevant and bias-­ free information. In a fundamental way, cultural safety thus enables the reexamination of the seeming dilemma posed by interculturally contrastive explanatory models— namely, that one must choose between them by prioritizing one and discarding the other. Instead, cultural safety shifts the explanatory paradigm itself, making it now preferable for interculturally contrastive models of health and disease to persist in noncompeting, possibly even complementary ways. Just what such a “model-­ pluralist” approach could look like in the context of Indigenous dementia care in Canada will be considered in the following section.

9.5

I mproving Indigenous Dementia Care in Light of Cultural Safety

To recall, while there may be mainstream acceptance of the idea that neuromedical science, along with institutionalized medicine and care services, is central to establishing best care standards for those diagnosed with dementia, it is not the case that Indigenous citizens of Canada generally share this acceptance. Several distinct reasons have been cited for this divergence, including a strong bias against institutionalized government care, a relative shortage of both Indigenous healthcare providers and non-Indigenous providers trained in cultural sensitivity and awareness with respect to traditional Indigenous health-care practices and principles, and contrasting cultural understandings of the causes, prognosis, and treatment of dementia. As a result of these factors, determining best care for Indigenous Canadians living with dementia, as well as developing best practices for prevention education, diagnosis, and caregiver support, must involve careful processes of intercultural negotiation and collaboration. However, these processes should in turn operationalize cultural safety as a decolonizing principle if they are to prove effective as well as morally and politically sound for Indigenous communities. As Hulko et al. [17, p. 5] explain, “To decolonize something is to call into question the existence and legitimacy of the settler colonial state and to mobilize Indigenous people and their allies to work toward the demise of settler colonialism in all its forms.” In other words, a decolonizing framework credits Indigenous critical distrust of settlers as a catalyst for opening new spaces for Indigenous self-determination (cf. [37, 38]).

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Ultimately, a health-care decolonizing paradigm with cultural safety at its center should enable Indigenous people to gain discrimination-free, culturally relevant access to all available explanations and resources relating to memory loss and dementia, and to determine whether and how to integrate this knowledge into existing cultural beliefs and practices for the sake of empowered decision-making regarding health care (cf. [39–41]). It is worth briefly highlighting some exemplary efforts toward this end already underway in Canada. First, in respect to dementia diagnosis, work is being done to create “culture fair” diagnosis tests for dementia that incorporate visual images reflecting the culture and territory of the person being assessed. These are a vast improvement over “culture blind” assessment tests [17, p. 8]. Regarding dementia education, there are projects underway in Canada to craft culturally specific educational materials for Indigenous school children to learn about aging and memory loss. One pedagogical strategy, for example, involves elder storytelling, an important vehicle for Indigenous transgenerational knowledge transfer [42]. As noted earlier, developing culturally appropriate resources is an evidence-backed strategy that aligns with cultural safety, though it does not guarantee the latter. Indigenous health-­ care specialists and researchers stress the need for more empirical work on Indigenous experiences with dementia and dementia care in Canada to strengthen this link [10, p. 113]. Beyond crafting culturally relevant resources in ways that align with cultural safety, relational and interpersonal preferences are promising sites for intercultural connection and health-care knowledge translation in Canada. For instance, while person-centered care is now the mainstream model for best practice with respect to caring for an individual with dementia, the very same model can also be critiqued for its prioritization and valorization of individual dignity and autonomy over and against a more relationship-centered model for care. Indeed, it could be argued that the person-centered care model makes most sense as an antidote to the reductionism of the biomedical model—which tends in practice to reduce someone to their diagnosis. So, as Hulko and Stern [43] note, in the context of traditional Indigenous approaches to eldercare that prioritize relationships, cyclicality, and intergenerational connectedness, it would make sense to also adjust the care paradigm to a culturally preferred relationship-based paradigm [43]. By the same token, if Indigenous communities tend to embrace a principle of shared living and support and de-emphasize individualism, then prevention outreach efforts ought to primarily be aimed at individuals as well as the larger communities they belong to [7, p. 102]. As Pace et al. [7, p. 103] state: “Our analysis shows that if they are to be meaningful, dementia prevention strategies must be created in partnership with Indigenous communities […] They must focus on incorporating cultural activities that help individuals achieve ‘whole’ health by tending to physical, mental, emotional, spiritual, and relational aspects of the self.” Defining best practices for dementia care for Indigenous Canadians also involves collaborative intercultural work. As Hulko et  al. [44] note, decolonization works best in collaboration with non-Indigenous settlers, to combine shared knowledge of “lessons [of the past] with current realities.” For example, prominent Indigenous

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explanations of dementia as, on the one hand, a normal part of old age and, on the other hand, a result of colonial-era trauma seem founded on a more holistic conception of health than the biomedical model standardly is, taking spiritual, interpersonal and emotional aspects of well-being into account, in contrast to a narrow focus on cognitive decline caused by physical cell damage. That said, specialized medical and neuroscientific understanding is not per se antithetical to holistic health modeling. It is hence conceivable that a neuromedical understanding of dementia could become embedded into a more holistic health model, which is developed and shared interculturally across Indigenous and non-Indigenous populations. The teaching of the medicine wheel, for instance, is a worldview and explanatory model of health that many Indigenous nations use in a variety of ways ([7, p. 100]; cf. also [45]). The medicine wheel is symbolically represented by four quadrants in a circle that represent the mental, spiritual, physical, and emotional dimensions of the self. Each part is seen as important, and must be balanced by the other parts to avoid domination (cf. [46]). Guided by interest from and shaped by Indigenous communities, neuroscientific findings could contribute to an expanded scope of these planes as they enrich understanding of the obvious mental, emotional, and physical imbalances that one is likely to notice when caring for a loved one with dementia. In this manner, holistic Indigenous philosophies of health and well-being could be brought into dialogue with neuroscientific knowledge in mutually enhancing ways.

9.6

Conclusion

There is an urgent need to address care standards for Indigenous peoples in Canada in relation to ADRD. Rates of dementia are rising among Indigenous populations, and both the Canadian health-care system and community health-care providers are being called upon to increase awareness among Indigenous Canadians of ADRD symptoms, prognoses, and treatments, as well as to provide improved Indigenous patient and caregiver support. As has been shown in the preceding, there are definite logistical, epistemic, and moral challenges associated with these tasks. This chapter has shown the valuable role that the decolonizing principle of cultural safety can play in providing the best care to persons living with dementia and their loved ones, particularly when those receiving care belong to historically colonized groups. Rights to traditional health practices, culturally relevant resources, and discrimination-free access to mainstream care can be mediated and navigated by creating conditions conducive to cultural safety within concrete intercultural health-care contexts. As the numbers of Indigenous Canadians affected by ADRD continue to rise, it becomes increasingly vital to address how the concept of cultural safety could impact Canada’s national dementia policies and professional dementia support training. Praiseworthy initiatives to this end are underway, yet more can be done to create evidence-based, culturally specific, nuanced understandings of comparisons between and among Indigenous and non-Indigenous perspectives on dementia and health practices. Such work will in turn cast into starker relief both the challenges of intercultural dementia care work, as well as the potential inroads

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toward defining standards for improved dementia care within a decolonizing paradigm that could prove of mutual benefit to both Indigenous and mainstream populations.

References 1. Jacklin K. Understanding dementia in Indigenous communities in Canada. [PowerPoint slides] Alzheimer’s Disease International Conference. March 29, 2011. Toronto, Canada; 2011. https://slideread.com/slide/slide-­1-­qklzq2. 2. Jacklin K, Walker J, Shawande M. The emergence of dementia as a health concern among First Nations populations in Alberta, Canada. Can J Public Health. 2013;104(1):e39–44. https:// www.ncbi.nlm.nih.gov/pmc/articles/PMC6973818/. 3. Walker J, Jacklin K. Current and projected dementia prevalence in First Nations populations in Canada. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 24–40. 4. Czyzweski K. Colonialism as a broader social determinant of health. International Indigenous Policy Journal. 2011;2(1):1–10. https://doi.org/10.18584/iipj.2011.2.1.5. 5. Hulko W.  From ‘not a big deal’ to ‘hellish’: experiences of older people with dementia. J Aging Stud. 2009;23(3):131–44. https://doi.org/10.1016/j.jaging.2007.11.002. 6. MacLeod S. A story about Joe in the news media: decolonizing dementia discourse. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 61–79. 7. Pace JE, Jacklin K, Warry W, Pitawanakwat K.  Perceptions of dementia prevention among Anishinaabe living on Manitoulin Island. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 86–106. 8. Henderson JN, Carson LD, King K. Indigenous vascular dementia: an Indigenous syndemic dementia model. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 41–60. 9. Lanting S, Crossley M, Morgan D, Cammer A. Aboriginal experiences of aging and dementia in a context of sociocultural change: qualitative analysis of key informant group interview with Aboriginal seniors. J Cross Cult Gerontol. 2011;26(1):103–17. https://doi.org/10.1007/ s10823-­010-­9136-­4. 10. Bourassa C, Blind M, Jacklin K, Oleson E, Ross-Hopley K. The understanding from within project: perspectives from Indigenous caregivers. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 107–132. 11. Cammer AL. Negotiating culturally incongruent healthcare systems: the process of accessing Dementia care in Northern Saskatchewan. Master’s thesis, University of Saskatchewan; 2006. https://harvest.usask.ca/handle/10388/etd-­12192006-­160831. 12. Finkelstein SA, Forbes DA, Richmond CA.  Formal dementia care among First Nations in southwestern Ontario. Can J Aging. 2012;31(3):257–70. 13. Ramsden I. Cultural safety. New Zealand Nurs J Kai Tiaki. 1990;83:18–9. 14. Ramsden I.  Towards cultural safety. In: Wepa D, editor. Cultural safety in Aotearoa, New Zealand. Auckland: Pearson Educ New Zealand; 2005. p. 2–19. 15. Papps E, Ramsden I. Cultural safety in nursing: the New Zealand experience. Int J Qual Health Care. 1996;8(5):491–7. 16. Curtis E, Rhys Jones R, Tipene-Leach D, Walker C, Loring B, Paine S-J, Reid P. Why cultural safety rather than cultural competency is required to achieve health equity: a literature review

9  Defining Dementia Care Standards When Cultural Safety is at Stake: The Case…

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and recommended definition. Int J Equity Health. 2019;18:174. https://doi.org/10.1186/ s12939-­019-­1082-­3. 17. Hulko W, Wilson D, Balestrery J. Introduction. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 3–18. 18. Browne AJ, Varcoe C. Critical cultural perspectives and health care involving Aboriginal peoples. Contemp Nurse. 2006;22(2):155–67. 19. National Aboriginal Health Organization. Cultural competency and safety: a guide for health administrators, providers, and educators. Ottawa: National Aboriginal Health Organization; 2008. 20. ANAC (Aboriginal Nurses Association of Canada). Cultural competence and cultural safety in nursing education: a framework for First Nations, Inuit and Métis nursing. Ottawa: ANAC; 2009. 21. Kumagai A, Lypson M. Beyond cultural competence: critical consciousness, social justice, and multicultural education. Acad Med. 2009;84(6):782–7. 22. Brascoupé S, Waters C. Cultural safety: exploring the applicability of the concept of cultural safety to Aboriginal health and community wellness. Int J Aborig Health. 2009;5(2):6–41. 23. Kleinman A.  Patients and healers in the context of culture: an exploration of the borderland between anthropology, medicine, and psychiatry. Berkeley: University of California Press; 1980. 24. Alzheimer Society of Canada. Rising tide: the impact of dementia on Canadian society. 2010. https://alzheimer.ca/sites/default/files/files/national/advocacy/asc_rising_tide_full_ report_e.pdf. 25. Medline Plus. Dementia. 2020. https://medlineplus.gov/dementia.html. Page last updated 6 Feb 2020. Accessed 20 Feb 2020. 26. WebMD.  What is dementia? 2020. https://www.webmd.com/alzheimers/types-­dementia#1. Published 9 Dec 2017. Accessed 20 Feb 2020. 27. Reed P, Carson J, Gibb Z. Transcending the tragedy discourse of dementia: an ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA J Ethics. 2017;19(7):693–703. https://doi.org/10.1001/journalofethics.2017.19.7.msoc1-­1707. 28. Jacklin K, Warry W.  Forgetting and forgotten: dementia in Aboriginal seniors. Anthropol Aging Quart. 2012;33(1):13–21. 29. Henderson JN, Henderson LC. Cultural construction of disease: a ‘supernormal’ construct of dementia in an American Indian tribe. J Cross Cult Gerontol. 2002;17(3):197–212. 30. Shweder R, Much N, Mahapatra M, Park L. The big three of morality (autonomy, community, divinity) and the big three explanations of suffering. In: Brandt A, Rozin P, editors. Morality and health. New York: Routledge; 1997. p. 119–69. 31. Jacklin K.  Understanding dementia in Indigenous populations: cultural safety and a path for health equity. Dementia Care 2019. Alzheimer Society Manitoba, March 4, 2019. Winnipeg, Canada; 2019. https://alzheimer.mb.ca/wp-­content/uploads/2019/03/Mar4Plenary-­ Understanding-­Dementia-­in-­Indigenous-­Populations-­Kristen-­Jacklin.pdf. 32. Jacklin K, Walker J. Cultural understandings of dementia in Indigenous peoples: a qualitative evidence synthesis. Can J Aging. 2019;10:1–15. https://doi.org/10.1017/s071498081900028x. 33. Forbes D, Blake C, Thiessen E, Finkelstein S, Gibson M, Morgan DG, Markle-Reid M, Culum I. Dementia care knowledge sharing within a First Nations community. Can J Aging. 2013;32(4):360–74. 34. Buchignani N, Armstrong-Esther C. Informal care and older Native Canadians. Ageing Soc. 1999;19(1):3–32. 35. Korn L, Logsdon RG, Polissar NL, Gomez-Beloz A, Walters T, Ryser R. A randomized trial of a CAM therapy for stress reduction in American Indian and Alaskan Native family caregivers. Gerontologist. 2009;49(3):368–77. 36. United Nations. United Nations declaration on the rights of Indigenous peoples. 2007. https:// www.un.org/development/desa/indigenouspeoples/declaration-­on-­the-­rights-­of-­indigenous-­ peoples.html.

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3 7. Simpson A, Smith A, editors. Theorizing Native studies. Durham: Duke University Press; 2014. 38. Tuck E, Wayne Yang K.  Decolonization is not a metaphor. Decoloniz Indige Educ Soc. 2012;1(1):1–40. https://jps.library.utoronto.ca/index.php/des/article/view/18630 39. Kovach M. Indigenous methodologies: characteristics, conversations, and contexts. Toronto: University of Toronto Press; 2009. 40. Tuhiwai Smith L.  Decolonizing methodologies: research and Indigenous peoples. 2nd ed. London: Zed Books; 2012. 41. Wilson S. Research is ceremony: Indigenous research methods. Halifax: Fernwood; 2008. 42. Hulko W, Wilson D, Kent J. Focus(ing) on love and respect: translating elders’ teachings on aging and memory loss into learning tools for children and youth. In: Hulko W, Wilson D, Balestrery J, editors. Indigenous peoples and dementia: new understandings of memory loss and memory care: University of British Columbia Press; 2019. p. 215–32. 43. Hulko W, Stern L. Cultural safety, decision-making, and dementia: troubling nothing of autonomy and personhood. In: O’Connor D, Purves B, editors. Decision-making, personhood and dementia: exploring the interface. London: Jessica Kingsley; 2009. p. 70–87. 44. Hulko W, Camille E, Antifeau E, Arnouse M, Bachynski N, Taylor D. Views of First Nation elders on memory loss and memory care in later life. J Cross Cult Gerontol. 2010;25(4):317–42. 45. Lavallee L.  Practical application of an indigenous research framework and two qualitative Indigenous research methods: sharing circles and Anishnaabe symbol-based reflection. Int J Qual Methods. 2009;8(1):21–40. 46. Rheault D’A.  Anishinaabe Mono-Bimaadiziwin: the way of a good life. Peterborough: Debwewin Press; 1999.

Towards an Ethics of Anticipation Between Hope and Responsibility French Perspectives on Alzheimer’s Disease

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L. Coutellec, S. J. Moser, and P. -L. Weil-Dubuc

Contents 10.1  I ntroduction 10.2  C  onceptualizing Anticipation Between Hope and Responsibility 10.2.1  Anticipating Dementia: Between Hope and Responsibility 10.2.2  Conclusion and Synthesis: Towards a Responsible Hope References

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Abstract

Anticipation, as a form of attention that we attach to the future, seems to be trapped in a dead-end alternative: passionate calls to rediscover collective hope— from politics or religion—clash with a series of ethical disenchantments that considerably reduce the scope and even the credibility of hope. First, we will briefly present the notions of hope and responsibility, which play essential roles in the ethics of the future. Then we apply the two forms of attention to the field of dementia. We describe two anticipatory approaches in respect to the disease: on the one hand, a hope-without-responsibility approach that anticipates a world relieved of dementia and, on the other hand, a responsibility-without-hope approach that anticipates a world accepting of and adapted to the specific needs of people living with dementia.

L. Coutellec · S. J. Moser · P. -L. Weil-Dubuc (*) Research Laboratory in Ethics and Epistemology, Paris-Saclay University, Inserm, Paris, France e-mail: [email protected]; [email protected]; paul-loup.weil-­ [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_10

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10.1 Introduction From politics, science, or religion, passionate calls to rediscover collective hope clash with a series of ethical disenchantments that considerably reduce its scope and even its credibility. The space for genuine anticipation, as a form of attention that we pay to the future, thus seems to be shrinking. Technological predictions by those still defending the ideology of progress are greatly constrained by the reality of catastrophic projections made by a civilization thinking of itself in terms of collapse [1]. Anticipation seems therefore to be caught in a vice-like grip between promise and resignation, reinforced and justified by an attention monopolized by the present and seeking shortsighted solutions [2]. Thus, it is the very possibility of continuing to think ahead and act accordingly that is destabilized. The ways in which we anticipate diseases are not exempt from such an observation: on the one hand, we are confronted with promises of a predictive medicine that draws the contours of a world without diseases [3]. On the other hand, calls for responsibility and the necessity for new “cultures of care” [4] are becoming more insistent, implying rising skepticism about biomedical answers. This is the aporia of our anticipatory thinking in respect to disease; it seems as if we have to choose between hope and responsibility. Agreeing to choose one of these two orientations inevitably leads to an impasse: the impasse of promise when it comes to opting for hope-without-responsibility and the impasse of resignation when it comes to opting for responsibility-without-hope. It is the robustness of this opposition that we would like to question in the following, using the example of dementia, which has been the focus of our anticipation research over the past 5 years.1 Below, we first briefly outline the notions of hope and responsibility that have played an essential role in the thinking of an ethics of the future. Therefore, we limit ourselves to two essential authors, Hans Jonas and Ernst Bloch, without reducing all philosophies of the future to these two approaches. We then apply the two forms of attention to the future to the field of dementia by describing two dominant approaches: on the one hand, a hope-without-responsibility approach that anticipates a world relieved of dementia and, on the other hand, a responsibility-­without-­ hope approach that anticipates the acceptance of and the world’s adaptation to the specific needs of people living with dementia. Finally, noting the inadequacy of these two directions, we propose a path towards a responsible hopefulness that will increase our ability to tolerate uncertainty while continuing to think about the future. It is the way of an ethics of anticipation as a contribution to future studies in which anticipation is the object of interdisciplinary research, and involved in a context [5, 6].

1   In the laboratory of excellence DISTALZ (Development of Innovative Strategies for a Transdisciplinary approach to ALZheimer’s disease).

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10.2 C  onceptualizing Anticipation Between Hope and Responsibility The philosophy of the twentieth century has given us two major conceptions of anticipation, that is to say, two ethical positions towards the future—that of Ernst Bloch and Hans Jonas. Even though we shall not reduce all philosophies of the future to these two authors, it seems to us that Bloch’s “Principle of Hope” [7] and Jonas’ “Principle of Responsibility” [8] are solid reference points to identify structural ethical tensions in contemporary thinking on anticipation. Conceived as a critical response to Bloch’s work, Jonas builds his ethics of the future as a critical response to utopian thoughts and inaugurates an intellectual polemic between his pessimistic ethics of responsibility and Bloch’s utopian ethics of the not-yet-being. For Jonas, our technological civilization requires us to think the future through the mediation of the imperative of responsibility. What needs to be anticipated in terms of responsibility is not so much the desirable, but more so the threatening. It is a response to the failure of Homo faber’s idea that everything that is technically possible must be achieved in the name of human progress; as Jonas points out, Auschwitz and Hiroshima are but a few examples for this misguided idea. His reflection is based on a concern about the total submission of humankind to the scientific project of the technological domination of nature. As humankind self-determines itself this way, its relationship to the world becomes set, even though human beings are intrinsically undetermined and their relationship to the world (and to others) not fixed in advance. This is what Jonas calls the anthropological deficit of humankind. It is this context that situates Jonas’ anxiety-inducing relationship to the future. By proposing a heuristic of fear, Jonas sets up an alternative to Bloch’s thought. By contrast, Bloch’s principle of hope relates us to the future in a more positive way, challenging us to anticipate the future as “wishful images.” The utopian rationality promoted in this anticipatory approach correlates with an ontology of the future as “not-yet-being.” In other words: where Jonas’ technological skepticism forbids any speculation on the future possibilities of a better world, Bloch’s future is an open field of possibility. In his critique, Jonas seems to reduce Bloch’s utopian thinking to a kind of unfounded reverie [9]. A careful reading of the Principle of Hope invites us to think that Bloch had the opposite in mind, though. Bloch’s category of possibility links the hope of what is possible to the materiality of the world that hosts it. Because reality is rich in unrealized possibilities, there are a multitude of “real possibilities” which we could achieve. According to Bloch, utopia is not the escape to the unreal but the exploration of the objective possibilities of reality and the struggle for their realization. He continues, “Expectation, hope, intention towards possibility that has still not become: this is not only a basic feature of human consciousness, but, concretely corrected and grasped, a basic determination within objective reality as a

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whole” [7, p. 7]. While talking about dreams, Bloch thinks of “little daydreams” of the kind we have with eyes wide open. Like Jonas, Bloch is very critical of a kind of uncritical optimism and automatic faith in progress. Defending an automatic optimism towards the future would be only slightly less dangerous than embracing absolute pessimism. Bloch’s idea of a concrete utopia is not a vague projection into an abstract future. “The authentic utopian will is by no means an infinite aspiration,” he writes [7, p. 25]. Through its desire to be linked to a very present materiality, concrete utopia does have a limited content. Therefore, the seeds of Jonas’ imperative of responsibility are already sown in Bloch’s hope, and we would be wrong to follow Jonas in his desire to contrast his work with that of Bloch. The ontology of the non-yet-being does not allow us to do whatever we want to. It is accompanied by a form of utopian rationality, an anticipatory consciousness or docta spes (or “erudite hope”), which forces us to reflect on the limited content of our projections. It is another way of reconciling the lucid and objective constraints of the present with our daydreams of a better world. “Philosophy will have conscience of tomorrow, commitment to the future, knowledge of hope, or it will have no more knowledge” [7, p. 14]. This is the lesson that can be learned for the construction of an ethics of anticipation that can reconcile hope and responsibility. These reflections draw an ethic of anticipation that can both avoid the overdetermination of a particular future, whether threatening or desirable, and fight against forms of withdrawal into the present that prohibit any projection forward. These two philosophies of the future are therefore not absolutely contradictory. And we make the hypothesis that agreeing to choose one of these two orientations of anticipation inevitably leads to an impasse: the impasse of promise when it comes to opting for the sufficiency of the “hope principle”—a hope-without-responsibility— and the impasse of resignation when it comes to opting for the sufficiency of the “responsibility principle”—a responsibility-without-hope. In the field of dementia, the first manifests the vision of a world, if not completely free of dementia, then at least a world where the prevalence of dementia is lower and its development is slowed by our understanding of the biological process, which in turn leads to the discovery of drug treatments or the effective prevention of risk behaviors. The second hypothesis illustrates the acceptance of a world with dementia. Either we “simply” have to adapt society to the phenomenon of dementia by making it “dementia friendly” or we must critique the systematic nature of early diagnosis practices for dementia. We propose to analyze the respective presuppositions of these expectations by distinguishing the epistemological, ethical, and social aspects of each.

10.2.1 Anticipating Dementia: Between Hope and Responsibility 10.2.1.1 Issues and Limits of Hope-Without-Responsibility Concerning Alzheimer’s disease (AD), hope is embodied mainly in the hope of change, or even revolution, that would constitute an understanding of the physiopathological mechanisms of its occurrence. This understanding could go hand in

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hand with the discovery of a cure. The dominant hypothesis for several decades, the so-called amyloid cascade hypothesis [10], has been tested in numerous clinical trials. Though unsuccessful thus far, the hope for effective treatment is not fading, as shown by the promises surrounding the ongoing trial called DIAN-TU [11]. In this case, hope is closely linked to a biomedical vision of AD. Its aim is to achieve an exclusive understanding of the phenomenon from a molecular point of view by identifying the causal chain. The hope that the disease can be characterized by an identifiable mechanism leads stakeholders to invest considerable sums in biomedical and clinical research. In recent years, particular attention has been drawn to mechanisms for massive data collection, particularly genetic data [12]. Given the difficulty in identifying such disease mechanisms, since AD has the characteristics of a complex multifactorial disease [13], a provisional step is to identify genetic or environmental “risk factors.” Such a step is considered provisional pending future identification of the disease mechanism. By choosing to include people at risk in clinical trials and by mitigating risk factors associated with the disease, it is now possible for people to know their predispositions without being able to modify them, whether or not they have requested it.2 The need for early identification of AD or potential AD has often been justified by the promotion of a certain form of autonomy. The presupposition is as follows: given access to these data and in particular to one’s “own” data, the individual in contemporary society would gain self-determination in respect to his or her life, but even more so a chance to realize the possibilities of his or her existence. This idea is illustrated by what Juengst et al. [14] have called a “rhetoric of empowerment” relayed by genetic testing marketing companies, medical research institutes, insurance companies, and public authorities, in the United States and France. Such rhetoric tends to confuse awareness of one’s own determinations, in this case genetic and environmental determinations, as they are formalized in the data, with the ability to act on them. However, a distinction must be made between self-­ awareness and self-control [15] because the extension of a freedom to act in virtue of self-awareness may well be an illusion. For instance, I may be aware of being particularly shy without being capable to act on my shyness. Indeed, it is only by adopting an “external standpoint” [15] that we can objectively define our own possibilities. However, according to Nagel, we always end up losing out on this search for causes because determinations will always be determinations of our determinations of our determinations, etc. In this case, I am particularly at risk to develop AD because I carry the genes X, Y, Z, etc., and because I have not exercised enough. I have not exercised enough because I was not raised in a health-promoting environment, etc. Nagel argues that human beings can only be free if they adopt internal standpoints on themselves, considering themselves as the origin of possible actions.

2  This includes the risk to increase the gap between the accuracy of our predictive tools and the limited power of the available therapeutic tools. The fact that there is actually no effective treatment is one of the particularities of all dementia syndromes and more generally of neuroevolutive diseases.

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Furthermore, to gather all our strength for the biological control of AD—control by science and medical technology—is to shape the social order. As a priority in our efforts to achieve a world without AD, we oblige ourselves to consider the present only as a transitional space that cannot be planned properly and inhabited. In this respect, specialized structures for the reception of people living with dementia seem to constitute the topological incarnations of this perspective: waiting rooms or transition places. From this perspective, people with AD in so-called “advanced” stages are at risk of becoming the objects of a double relegation. The relegation is first of all synchronic: considered as incurable in the present, these permanent patients are seen as diluting the efforts and concerns of a care that would otherwise have an exclusively medical and therapeutic, or even curative, purpose. But relegation could also be diachronic: from this perspective, people with advanced AD represent a population that will no longer exist in the future. They are already a population of the past, so to speak, and rather than being ignored or stigmatized, as are people in the early stages of dementia, they are rather forgotten [16]. This ultimate form of disrespect [17] is the fate of many people with AD today. Most care facilities where people with dementia live can thus be compared to what Michel Foucault called “heterotopias of deviation” [18] inscribed in a “heterochrony”: a place of transit inscribed in a doubly transitional time, between the time of productive and autonomous life and the time of death, between the time of illness and a utopian era without dementia.

10.2.1.2 Issues and Limits of Responsibility-Without-Hope In this section, we will outline the responsibility-without-hope approach that anticipates the acceptance of and the world’s adaptation to the specific needs of people living with dementia. This approach holds out the prospect of a society that will have adapted to the phenomenon of dementia, in which everyone will have become a “dementia friend” [19]. Accordingly, the systematic and expanding tendency of early detection practices for dementia is herein criticized. We will argue that opting for the sufficiency of the “responsibility principle”—a responsibility-without-­ hope—might lead to the impasse of resignation. In contrast to theses developed in the previous section, the constructivist hypothesis proposes that dementia stems from a reduction of the human being to particular cognitive abilities and from a phenomenon of medicalizing aging, leading to the production of sick, sometimes reified subjects. The medicalization of what was once called “senile dementia” has justified and legitimized the medicalization of the lives of people living with dementia. These theses are in principle accompanied by the idea that AD specifically is not really a disease3 [20]. Other hypotheses, derived from psychiatry, psychoanalysis, and neuropsychoanalysis, reject the biomedical overdetermination of dementia by deeming it psychological: dementia is said to be linked to psychological phenomena caused by a social injunction to “depreciate oneself” [21], a manifestation of a compromise between the necessity to survive biologically and social death, in response to an environmental order to leave the scene. In other words,  https://www.dementiafriends.org.uk

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on this conception, dementia is a form of neurological somatization of an implicit value judgment made by society. As a result, certain social structures can be imprinted in the bodies of those diagnosed with dementia [22]. Although quite different, these two hypotheses—constructivist and psychological—share the same inspiration: they are no longer searching for a purely physical cause or risk factor to explain the onset of the disease. The focus is rather put on the construction of a sociocultural environment that promotes the social death of aging people. Thus, these hypotheses propose that dementia is less a neuropathology than a social pathology. This should provoke us to reflect on our pejorative representations of aging and their consequences. If it is an ethics of empowerment that seems to justify embracing hope, it is rather an ethics of carefreeness that justifies embracing responsibility. Two ideas of freedom are therefore opposed, according to the distinction established by the philosopher Isaiah Berlin [23]: While the first promotes positive freedom (being free to), the second defends negative freedom (being free from). Negative freedom will be achieved, so to speak, when those affected by the disease are protected against the medicalization of ageing rather than against the disease itself. The ethics of carefreeness seeks to show the harm of early diagnosis of dementia—which may be the consequences of clinical trials or unregulated genetic tests—by targeting their scary, stigmatizing, or deceptive effects [24–26]. Rather than early diagnosis, we should direct our efforts towards timely diagnosis, adapted to the circumstances of each individual’s life. The physician should remain the primary judge of the relevance and timing of diagnosis, taking into account the unique circumstances of life and patient preferences. Hans-Georg Gadamer developed this ethics of carefreeness [27]. He proposed a critique of modern medicine that, because of its specialization and technological development, would generate a new form of anxiety in people, as one is always confronted with the objective measurement of one’s state of health. New forms of measurement would thus break the “charm,” the ease and the balance of ignorance. The subject would be hindered in his or her life plans by the new concern of being aware of his or her own biological dispositions. Diagnostic information is here considered a burden that irreversibly weakens the primary ease of life and a certain kind of lightheartedness, as Gadamer might put it. On the other hand, ignorance or, if you will, innocent uncertainty would not deprive the individual of this kind of “freedom.” This ethics of carefreeness evokes two types of critique [28]: first of all, its application seems difficult. How could it be possible to “protect” individuals from information that might concern them in a social environment where incentives to know proliferate? The individual in contemporary societies can be informed of his or her potential predispositions through multiple channels outside the medical field: relatives, chance discoveries, the media, etc. The second critique concerns the paternalistic nature of such protection, contrary to the recognized exercise of a right to know and not to know [29]. What right do we have to deprive a person of access to information that could change their perception of their own existence? Furthermore, we cannot overlook the potentially beneficial effects of inclusion in clinical trials. Finally, responsibility-without-hope also leads to massive investment into adapting society to the growing influence of cognitive disorders. The best way to counter

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dementia would therefore be a radical change in social organization, in particular by empowering as many actors to be engaged in civil society as possible. The concept of dementia-friendly communities (DFC), forged over the past decade, echoes this concern [30, 31]. The main ideal is to set up collective responses by mobilizing all the actors in society to improve quality of life for people living with dementia and their families. According to this approach, dementia as a form of vulnerability does not only concern people living with dementia, their families, and health-care professionals, but all of us. How can pharmacies, hotels, train stations, airports, public transport, supermarkets, banks, or post offices in general be adapted to the needs of people living with dementia? The answers to this question are as follows: 1. Widely disseminate information about dementia and its impacts, pointing to the fact that it is a major issue of the present age. To do this, it is necessary to develop a new, non-stigmatizing discourse regarding the disease. 2. Promote the inclusion of people living with dementia in the community life and to make dementia visible in order to help normalize it. 3. Recognize that patients are the firsthand experts on their disease and that they have something to contribute to their treatment and life preferences. Moreover, it is necessary to ensure that they can be actors in the issues that concern them (“Nothing about us, without us!”). It is worth noting that the approach of a radical social reorganization contributes paradoxically to a form of normalization of cognitive disorders through de-­ dramatization and de-stigmatization, making dementia no longer a disease but above all a different form of being-in-the-world. While such an approach is consistent with existing trends in a global struggle for the inclusion of vulnerable people, such as those led by institutions such as WHO, for example, the willingness to transform almost any citizen (who does not have dementia) into a potential caregiver must be critically questioned. Informal everyday help, executed by countless men and women, already exists today. Hairdressers continue their service towards people living with dementia, bakers include people with dementia among their clients, and pedestrians administer to the needs of people who might get lost while wandering [32]. Is it therefore desirable to make citizens even more responsible for looking out for the need of people living with dementia, particularly by relying on the threat of a collapse of social health systems?

10.2.2 Conclusion and Synthesis: Towards a Responsible Hope 10.2.2.1 The Tolerance of Uncertainty The two approaches of anticipating the future surveyed in this chapter, which seem to be at odds with each other, nevertheless share one thing in common: an inability to accept the uncertainties of the future. Following the hope-without-responsibility approach, uncertainty is only a transitional passage between ignorance and knowledge, as if it were required that contemporary uncertainties are destined to dissipate

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through the advances of knowledge. This is the belief in a definite possibility to curtail and contain dementia. The responsibility-without-hope approach, for its part, postulates the impossibility of better biomedical knowledge of dementia and an improvement in therapies, which leads to the recommendation that individuals and societies adapt to a kind of inevitability. In both cases, however, the preconceived future seems to disregard a whole range of uncertainties. However, it seems to us that the key to reconciling these two perspectives, each of which has its share of relevance, lies precisely in a relationship of tolerance to the radical uncertainty that the future brings. We must recognize the many uncertainties that surround dementia and learn to deal with them: the phenomenon of dementia, by its complexity, resists any possibility of disciplinary or theoretical synthesis [33], it is elusive [31]. Tolerating uncertainty in our understanding of dementia means resisting any reduction of the object of knowledge to one of its dimensions. It means also considering non-­knowledge as possibilities for exploration and not only as temporary anomalies. Taking into account the radical uncertainties of the future is the main argument for undoing the sufficiency of ideological visions of responsibility and hope.

10.2.2.2 Reconsidering Our Expectations of Science This exploration allows us to see that Bloch’s principle of hope and Jonas’ imperative of responsibility are both necessary to think about the future of dementia. And to explore this convergence, we propose to forge the concept of responsible hope. With this concept, we seek to reconcile two requirements: Both to live in a world where dementia is not seen as a temporary phenomenon, and to continue to explore the causes of the disease and to work towards an effective therapy without resigning ourselves to helplessness. In other words, anticipation must not consist in leaving the present world in the name of a promise, nor in adapting the present to a perceived inevitability in the name of responsibility. Rather, it must consist in building the conditions for a livable future in the present. Responsible hope invites us to think about the multiple dimensions of dementia in a dynamic way. It is just as much about accepting a world where people with dementia are an integral part of society as it is about continuing to promote a world where cognitive disorders have less impact. Promoting responsible hope also means understanding that hope is not only to be located in therapeutic care (in the sense of pursuing a cure) and that responsibility is not only to be located in personal care (in the sense of caregiving and care-­receiving), but both at the same time and possibly even more. Responsibility also lies both in the search for a cure and in understanding the disease, and hope also lies in caring for the person with dementia. In that sense, the concept of responsible hope gives us the opportunity to reconsider our expectations regarding biomedical research. Science of this domain will no longer be what reassures us in the face of a threatening future or what contributes to our despair. A political philosophy of biomedical research that puts at its heart the concept of responsible hope will thus move away from both the illusions of the economy of promise [34] that invites us to expect too much from research results, and the illusion of a moral of resignation that does not give us the right to invent another science [35]. This responsible science, capable of maintaining hope, can only be an involved science.

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10.2.2.3 Building an Ethics of Anticipation Finally, in this contribution to an ethics of anticipation, we have set out some points of reference to understand dementia outside the traditional disciplinary silos or ideological overdeterminations without confining ourselves to a pragmatic approach. Thus, the field we are broaching with the ethics of anticipation is not only another sector of applied ethics, but is a proposal to renew our approach to contemporary scientific, technological, and social change. It is a proposal to increase our ability to act and think with the future. Acknowledgments  We would like to thank Prof Emmanuel Hirsch for his active and attentive support. Though the many discussions he held with us, he has contributed to these reflections.

References 1. Diamond J. Collapse. How societies choose to fail or succeed. New York: Viking Press; 2005. 2. Innerarity D.  The future and its enemies. In: Defense of political hope. Stanford: Stanford University Press; 2012. de la Maison des sciences de l’homme; 2019. 3. Brigham KL, Johns M. Predictive health: how we can reinvent medicine to extend our best years. New York: Basic Books; 2012. 4. Zimmermann HP. Cultures of care–facing dementia: cultural studies perspectives. In: Kulturen der Sorge. Wie unsere Gesellschaft ein Leben mit Demenz ermöglichen kann. Frankfurt/New York: Campus Verlag; 2018. p. 23–38. 5. Poli R. Introduction to anticipation studies. Cham: Springer; 2017. 6. Coutellec L, Jolivet A, Moser SJ, Weil-Dubuc PL. Le futur de la santé. Pour une éthique de l’anticipation. Paris: Editions de la Maison des sciences de l’Homme; 2019. 7. Bloch E. Le Principe Espérance, t. I. Paris: Gallimard; 1976. 8. Jonas H.  Le principe responsabilité. Une éthique pour la civilisation technologique. Paris: Cerf; 1990. 9. Münster A. Principe responsabilité ou principe espérance ? Bordeaux: Le Bord de l’eau; 2010. 10. Hardy JA, Higgins GA.  Alzheimer’s disease: the amyloid cascad hypothesis. Science. 1992;256(5054):184–5. 11. Bateman RJ, Benzinger TL, Berry S. The DIAN-TU next generation Alzheimer’s prevention trial: adaptive design and disease progression model. Alzheimers Dement. 2017;13(1):8–19. 12. Deetjen U, Meyer E, Schroeder R. Big data for advancing dementia research: an evaluation of data sharing practices in research on age-related neurodegenerative diseases. Documents de travail de l’OCDE sur l’économie numérique, n° 246, Éditions OCDE, Paris; 2015. 13. Alkadhi K, Eriksen J.  The complex and multifactorial nature of Alzheimer’s disease. Curr Neuropharmacol. 2011;9(4):586. 14. Juengst E, Flatt M, Settersten R. Personalized genomic medicine and the rhetoric of empowerment. Hastings Cent Rep. 2012;42(5):34–40. 15. Nagel T. The view from nowhere. New York: Oxford University Press; 1989. 16. Weil-Dubuc PL.  Indifférence, stigmatisation et oubli: trois formes de mépris propres aux maladies neuro-évolutives. In: Hirsch E, Brugeron P, editors. Vivre avec une maladie neuro-­ évolutive. Toulouse: Érès; 2019. p. 39–53. 17. Honneth A. Disrespect. Cambridge: Polity Press; 2007. 18. Foucault M. Dits et écrits (4). Paris: Gallimard; 2001. 19. Whitehouse P, George D. The myth of Alzheimer’s. What you aren’t being told about today’s most dreaded diagnosis. Detroit: Gale Cengage Learning; 2009. 20. Linden M, Juillerat A. Penser autrement le vieillissement. Bruxelles: Mardaga; 2017.

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21. Ploton L. La personne âgée: son accompagnement médical et psychologique et la question de la démence. Lyon: Chronique Sociale; 1990. 22. Fassin D, Memmi D, editors. Le gouvernement des corps. Paris: Editions EHESS; 2004. 23. Berlin I. Two concepts of liberty. In: Berlin I, editor. Four essays on liberty. London: Oxford University Press; 1969. 24. Karlawish J.  Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease. Neurology. 2011;77(15):1487–93. 25. Fox C, Lafortune L, Boustani M, Brayne C. The pros and cons of early diagnosis in dementia. Br J Gen Pract. 2013;63(612):e510–2. 26. Brayne C, Kelly S. Against the stream: early diagnosis of dementia, is it so desirable? BJ Psych Bull. 2019;43(3):123–5. 27. Gadamer HG. The enigma of health. The art of healing in a scientific age. Cambridge: Polity Press; 1996. 28. Weil-Dubuc PL. The constraints of the right to know. Thoughts on presymptomatic diagnosis [Internet]. Books and Ideas. 2014 [cited 28 August 2019]. Available from: https://booksandideas.net/_Weil-­Dubuc-­Paul-­Loup_.html. 29. Andorno R. The right not to know: an autonomy based approach. J Med Ethics. 2004;30(6):612. 30. Lin S-Y. ‘Dementia-friendly communities’ and being dementia friendly in healthcare settings. Curr Opin Psychiatry. 2017;30(2):145–50. 31. Gronemeyer R.  The dementia friendly community. In: Kulturen der Sorge. Wie unsere Gesellschaft ein Leben mit Demenz ermöglichen kann. Frankfurt/New York: Campus Verlag; 2018. p. 493–510. 32. Moser SJ.  Wandering in dementia and trust as an anticipatory action. Med Anthropol. 2019;38(1):59–70. 33. Coutellec L. Penser Alzheimer comme un objet (dés)intégratif. Contribution épistémologique et enjeux éthiques. In: Chrysos P, Gentes A, editors. L’aventure épistémologique contemporaine. Paris: Editions Kimé; 2019. p. 137–52. 34. Joly PB. Le régime des promesses technoscientifiques. In: Audétat M. Sciences et technologies émergentes. Pourquoi tant de promesses ? Paris: Hermann; 2015. p. 31–48. 35. Stengers I. An another science is possible. Cambridge, UK: Polity; 2018.

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Contents 11.1  I ntroduction 11.2  L  egal Status and Rights of Persons Suffering from Dementia in Serbia 11.3  Human Dignity, Dementia, and the Law 11.3.1  Human Dignity, Dementia and Law in Serbia 11.3.2  Human Dignity and Dementia 11.4  Conclusion References

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Abstract

This chapter identifies, analyzes, and discusses the existing legal framework relevant to the lives of persons suffering from dementia in present-day Serbia, particularly the prospects and limitations of the applicability of human dignity in this context. The existing framework addresses, among other issues, the formal removal of a person’s legal capacity (this chapter presents new data regarding dementia-­ related cases), the following appointment of a guardian, the possibilities of designating a person who shall thenceforth make health decisions in the case of an individual’s incapacity, and additional general health concerns and patients’ rights norms, as well as a set of anti-discrimination and social protection norms. Yet this structure lacks more broadly construed advanced planning options, specific supported decision-making solutions which could better correspond to particular stages and manifestations of dementia (fluctuating cognition, borderline statuses, specific deficiencies), and improvements regarding the empowering of caretakers, among other elements. D. Franeta (*) Faculty of Law and Business Studies dr Lazar Vrkatić, Union University, Novi Sad, Serbia e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_11

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The governing framework does, however, rely significantly on the concept of dignity. Considering the relevant legal and philosophical discourses on human dignity, as well as its place in the law of Serbia, the author explains why understanding and applying the concept in cases of those suffering from dementia poses difficulties. Two major, interrelated interpretational axes of human dignity are distinguished, as are respect for human dignity and a more general request not to downgrade.

11.1 Introduction “The threat of madness… replaces the fear of hell,” warned Ricoeur [1, p.  195], explaining that the pressure of immanence upon an individual was even crueler than that of any potential transcendence. People used to rely upon the will of God and many of their fears were directed at the future punishment for their sins. Contemporary man’s perspective on existence lies far more in one’s own reason, so the fear of losing it has grown tremendously. Dementia is an umbrella term for a number of conditions which include “disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment,” [2] or, simply, any condition in which such footholds on reality are fundamentally shaken. It is also sometimes referred to as an identity-related condition, since memory, reason, and identity are closely connected. Therefore, the fear of dementia is manifested not only as a fear of losing a foothold, but also as a fear of losing an important part of “oneself.” Not only dementia, but memory itself, remains, to a significant extent, an enigma to contemporary science. There are still no comprehensive or definitive answers to the questions of where exactly, and how, different memories are stored, how one manages to recall certain experiences and not others, how some previous events suddenly occur in one’s mind, why certain memories manifest themselves in one’s dreams, and why one forgets one’s first experiences (infantile amnesia).1 Nor do we know—as in the case of Alzheimer’s disease (AD)—what the precise causes of dementia are or how to cure it. What we do know is that dementia is experienced as a major individual and family problem, that it downgrades cognitive capacities, and that it can be characterized by dysphasia and dyspraxia, as is sometimes the case in the onset of AD [2, p.  47], by “apathy, disinhibition, or accentuation of previous traits such as egocentricity, paranoid attitudes, or irritability” in cases of vascular dementia [2, p. 48], or, simply, by changes in individual character. Caring for persons with dementia is so demanding that caregivers become considerably more susceptible to depression [4, 5], so much so that in certain environments, as for instance in Serbia, family caregivers manifest symptoms of depression in 70% of all cases [6, p. 21].  Some of these questions were posed by Bergson [3] more than a century ago.

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In light of such circumstances, particularly the fact that approximately 5% of the global population over 60 suffers from dementia [7], that dementia is still an incurable, progressive, and lethal condition, and that, last but not least, the level of pain and fear dementia generates remains distressing, the question arises of what could be done—while we are waiting for answers and adequate treatments–so that present suffering and fear could be better understood and diminished. A part of this difficult enterprise is definitely the improvement of the legal status, rights, and protection of those persons suffering from dementia. This chapter will first identify the legal status of this group in a specific country in the current global landscape—the Republic of Serbia—and then will proceed to examine the possibilities of its improvement, specifically in view of the dignity of persons suffering from dementia, a concept which will prove to be one of the regular references in relevant legal acts. Therefore, the first part of this chapter focuses on identifying, analyzing, and critiquing the applicable law in Serbia, while the second clarifies the prospects and limitations of employing the concept of human dignity in this context.

11.2 L  egal Status and Rights of Persons Suffering from Dementia in Serbia The laws of the Republic of Serbia of foremost relevance to the legal status and rights of persons suffering from dementia include the Family Act (FA), which regulates the institute of guardianship, the Law on Non-contentious Proceedings (LNP), which regulates the removal of legal capacity, and the Law on Prevention of Discrimination against Persons with Disabilities (LPDPD), which stipulates that the rights, dignity, and equal inclusion of persons with disabilities in social processes must be respected, while introducing affirmative measures and prohibiting discrimination. There is also the Law on Social Protection (LSP), which defines the framework for providing help and care and empowers support for independent living and community inclusion. Additionally relevant are certain aspects of the Law on the Protection of Persons with Mental Impairments (LPMI), which regulates the protection, yet also the limitations of rights of persons with mental impairments, the Law on Health Protection, and the Law on Patient’s Rights [LPR], as well as some “softer” regulations such as the Code of Medical Ethics (CME). Furthermore, there is a whole set of norms of other laws which address the rights and status of persons with restricted or removed legal capacity (for instance, the Law of Contract and Torts, the Inheritance Act) and which address the mentally incompetent or those with diminished mental competence (the Criminal Code [CC], the Criminal Procedure Code). Added to this, there are many international acts that have been ratified, which, according to the Constitution, make up an integral part of the legal system of the Republic and are to be applied directly. Before all, there is the UN Convention on the Rights of Persons with Disabilities (CRPD), ratified in 2009, as well as the revised European Social Charter (ESC), which emphasizes the rights of the elderly to social protection (Art. 23) and provides a legal framework for

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continuous care. According to Article 18 of the Constitution, the judicial practice of the European Court of Human Rights (ECtHR) and other international institutions supervising the implementation of human rights must also be considered. Article 37 of the Constitution guarantees everyone the right to legal person as an inalienable human right protecting everyone’s right to legal capacity and, upon becoming an adult, the capability of deciding independently about one’s rights and obligations. This right is not to be restricted; a law can only prescribe the manner of its exercising, without infringing upon its substance (Art. 18). Here, though, arises the issue of whether the removal of legal capacity regulated by the LNP could be considered as not influencing the essence of the right to legal person (see [8, p. 367]). In present-day Serbia, there are two forms in place for the removal of legal capacity: full and partial. The procedure for the removal of legal capacity can be initiated by a court ex officio, by a guardianship authority, or by enlisted close persons and the court session is to be attended by the person for whom proceedings are being conducted—a provision imposed by the Constitutional court (Už 5793/2011 on sixth February 2015) due to widespread differences in practice—except in instances in which the hearing is not possible or when such a protocol would have a detrimental effect on the person being evaluated. The person for whose sake the proceedings are conducted may lodge an appeal regardless of their mental state. The decision on the removal has to be revised at least every 3 years. In the case of a partial removal of legal capacity, the ruling indicates—on the basis of expert opinion—which activities the person can conduct on his/her own. This solution has been righteously criticized as inferior to one designating only those activities which the person is not capable of conducting by him/herself [9, p. 22]. The decision to remove legal capacity is taken upon consideration of the opinion of two psychiatrists (LNP, Art. 36). Although the court is not obliged to meet the decision implied by experts, the rulings de facto do not usually differ substantially from these opinions [10]. Finally, the Registrar, as well as the body maintaining land or other public real property register, are to be notified of the decision to initiate the procedure, as well as of the ruling upon it, for the purposes of entering it into the register. From 2013 to 2016, a considerable number of those persons fully removed of legal capacity were suffering from dementia (24%) [9, p. 32]. A similar result has been confirmed by research into rulings from 2015 to 2019 of the Basic Court of Novi Sad (BCNS) carried out for the purposes of this chapter. The court rulings of the BCNS, which is one of the largest basic courts in Serbia,2 also show that in dementia-related cases, persons about whose legal capacity is being ruled have mostly not been present in the court due to the lack of their ability to participate. The procedure of placing a person under guardianship inherently follows the procedure of removing legal capacity. An adult fully removed of legal capacity is bestowed a status equivalent to that of a younger minor (aged 0–14), while a person 2  The BCNS was in 2018 the fifth out of 67 basic courts in Serbia in view of the number of cases in work. More importantly, from 2013–2016 21% of all decisions on the removal of legal capacity in Serbia were issued by the BCNS [9, p. 31].

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partially removed of legal capacity is bestowed the status equivalent of an older minor, currently defined as a child aged 14 to 18 (FA, Art. 146-7). According to the FA (Art. 64), an older minor can conduct legal actions of minor relevance, as well as any and all legal transactions validated beforehand or afterwards by his/her legal representative. Since the actions which a person partially removed of legal capacity can undertake are clearly defined in the court ruling, there is no full analogue between persons with this status and the status of an older minor. Additionally, Article 65 of the FA also demands that the opinion of a child be respected according to their maturity, while no such similar rule is to be found regarding persons partially removed of their legal capacity. In other words, after the removal of legal capacity, the legal subjectivity of the person is diminished; in the case of full removal, the possibility of undertaking any legal transaction, of asserting any legally relevant will, of in any way authorizing the exercising of this will on one’s account by others, or of undertaking procedural actions by themselves are removed from the person. All these rights are transferred to a guardian. Consequently, persons fully removed of legal capacity lack, among other powers, the right to work, to marry, and to make a will. Unlike in most European Union countries [11, p.  33], a legal guardian is not appointed by the court but by the guardianship authority, according to the rules of general administrative law procedure. In Serbia, when appointing a guardian, a plan of care should be defined, the place of residence is to be determined, and an inventory of ward’s property is to be performed by the guardianship authority’s standing commission (FA, Art. 125). Regularly, accommodation within the family is given priority. There are also certain restrictions and requirements regarding the placement of a guardian. The prohibitions are more precise, while the requirements tend to be vague: a guardian is expected to possess the properties and capacities necessary for taking care of another person. There is also the possibility of guardianship of multiple wards, collective guardianship, and immediate guardianship. The following duties of a guardian are defined: to take care of the personality of ward, to represent the ward, to acquire assets to support the ward, to manage and dispose of the ward’s property, and to submit a report annually (FA, Art. 135–139, 142). Another relevant legal domain for the status of the persons suffering from dementia is the one of social protection. The Law on Social Protection includes adults with mental impairments in the group of beneficiaries (Art. 41) and defines different types of service including community services, support for independent life, consultant and therapeutic services, and accommodation services. Furthermore, article 11 of the new Law on Healthcare introduces the concept of social care for health, which includes economic measures, health measures, and social policies aimed at improving the conditions of healthcare, particularly in cases of certain serious diseases. Strangely enough, dementia is not included in this list—yet being older than 65 is—despite this condition inevitably generating a great deal of suffering and problems, with research indicating that in the institutions of social protection reside many people suffering from dementia. The low capacity of public institutions to provide accommodation for all those in need, as well as other deficiencies present in such institutions, has led to the establishing of many private care facilities [12],

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including some operating without necessary permissions [12, p. 17]. Research indicates that in private institutions of social protection, about half of those receiving care are people suffering from dementia. If one now turns to the dominant legal model defining the status of individuals suffering from dementia in Serbia, it could be concluded that de iure there is a mix, or that there are some steps distancing the current law from the dominant so-called medical model of disability. Having ratified the CRPD and a number of international treaties and integrated international judicial practice, Serbia is obliged to incorporate the ideas of these documents and institutions. These ideas are based upon a wider tendency to change the paradigm long used in the prevailing approach to disability, as well as to mental disability, and therefore also dementia. This paradigm shift was already underway in the eighties of the last century when WHO [13, p. 31] introduced a distinction between impairment as a medical concept and disability as a social construct. This conceptual change should have enabled a shift in perspective that would attempt to bring the enjoyment of rights of persons with impairments, as well as their taking part in society and self-determination, to the highest possible level. With such guiding principles, in regard to cases of persons with mental impairments, the provision of support rather than the default removing of legal capacity should be the natural approach. Accordingly, empowerment and self-determination should be prioritized over the best-interest principle and paternalism; mental impairment and legal incapacity should not be conflated and as much deinstitutionalization as possible should be aspired to. There are certain readings of the CRPD in this direction, claiming that the Convention embedded disability in the context of the second-­generation of rights, while it was earlier viewed from the first-generation of rights perspective [14, p. 11]. This enabled differentiation of mental incapacity and legal incapacity. All considered, limited, or full removal of legal capacity as the only alternatives to full legal capacity appear to be insufficient mechanisms for meeting the criteria entailed by the enjoying of the right to legal personality. For example, someone might be able to make a decision, but not execute it; someone could forget their earlier decisions or be extremely prone to suggestion [15, III, p. 17]. Dementia presents a particular challenge given the strikingly different stages of the condition, the fluctuating cognition phenomena inherent in AD, PD, multi-infarct, and particularly Lewy bodies dementia [16–18], and that in recent years there has been a tendency to stretch this concept, so that medical discourse now includes the terms MCI (mild cognitive impairment), SCI (subjective cognitive impairment), and even preclinical AD [19]. Therefore, the multifaceted question arises: to what extent does making a diagnosis correspond to a specific understanding of the social functionality of a person in a particular society or in general and is there a vicious circle between these two? This issue becomes particularly troublesome in cases of borderline cognitive statuses when one is to be placed inside or outside the diagnostic manual. If a diagnosis is usually followed by the removal of certain rights or has an important influence upon someone’s legal or social standing, it could likely impact the expert decision.

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Even at the level of law, there is a lack of precise solutions which could enable a more adequate approach to the difficult situation of persons suffering from dementia. First, there is a need to create alternatives [compare 10] in order to enable the less restrictive options and to empower both those that are in need and those providing care. Such protocols should include legal guarantees for work and life conditions of caregivers, for adequate financial, health and psychological support, and for continuous and appropriate training and supervision, as well as the introduction of the supported decision-making option. The latter concerns empowering adjudicated individuals to make decisions regarding the place they would like to live, the medical care they would like to receive, etc., but also relates to the possibility of taking part in appointing the caretaker or guardian and of being in a position to require their change, notwithstanding the level of their mental incapacity. According to the FA (Art. 335), currently only a ward capable of judgment may file a grievance regarding the guardian’s work, so the ward’s wishes and preferences do not play an exact role in the existing framework of care. This leaves the ward’s status potentially at risk, as does the fact that a guardianship authority can take multiple roles in the removal of legal capacity procedure: as guardian, as temporary representative, and as the initiator of the procedure [compare 10]. Furthermore, advanced planning is still a limited option, available only when designating a person who is to make health decisions in case of an individual’s incapacity (LPR, Art. 16), but not in regarding other important life decisions. In examining the de facto situation more thoroughly, it would seem that even more extensive measures are necessary. Research carried out over the past decade has shown that, in general, the full removal of legal capacity has clearly been the modus operandi, although a slight trend of growth in partial removals has developed [9, p.  30]. Examination of the court rulings of BCNS from 2015 until July 2019 indicates almost one hundred dementia-related removals of legal capacity from 2015 until July 2019, including several cases of reviews of previous rulings in 2015, and less than ten partial removals over this same time. Dementia-related removals have mostly involved “deeply demented persons” (e.g., BCNS R2 110/19 7.5.2019.), with such cases mainly described as those who are not able to recognize their closest relatives and with whom dialogue either had little or no communicative value or was not possible at all. Also noteworthy is that legal capacity has been removed in slightly greater numbers in the case of female gender. Available earlier research also suggests that the number of those who willingly reside in nursing homes is low [12], that there is a shortage of spaces in nursing homes [6, p. 8] and that a low number of the elderly—particularly among those suffering from dementia—actually uses public services of help in the home [6, p. 8]. There also appears to be an insufficient number of employees in the social care domain [20, p. 23]. According to Article 99 of the Regulation on Providing Social Care, personal assistants are available only for those with the capacity for decision-­ making. Above all, the immediate participation of the centers for social care in guardianships is high. In 2017, in 31% of all cases of adult guardianship, this role was performed by a center for social work itself [20, p. 10].

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Finally, the existing legal and policy documents, such as the recently adopted Strategy for Public Health (2018–2026), do not identify dementia as a priority, although there is a certain emphasis placed on the health of the elderly population and important civic organization research and initiatives. Furthermore, there is still no national plan for dementia as required by the new WHO global plan for dementia, nor a dementia registry, despite an estimated prevalence of 6.7% [21] in the national population, with experts estimating that 10% of persons over 65 are likely to suffer from this condition in Serbia [22].

11.3 Human Dignity, Dementia, and the Law 11.3.1 Human Dignity, Dementia and Law in Serbia The described paradigm shift from a singularly medical to a more social perspective is sometimes interpreted as a shift from viewing and treating persons with mental impairment as objects to regarding them as individuals with dignity [23, p.  17]. Taking this into consideration, along with the importance of the concept of dignity in the present-day law and its growing use in different fields of law, including medical law and impairment law, as well as its different interpretations, this part of the chapter will focus on the use of dignity in law in regard to persons suffering from dementia. Firstly, the place of this concept in Serbia’s law relevant for this group of people will be identified. The discourse will then proceed to an examination of possible interpretations when embedded in the context of dementia. The issue of interpretation implies taking into consideration different discourses of human dignity present in law and philosophy. At this point Serbia has ratified a three-digit number of relevant international treaties, a number which includes the most fundamental constructs of the Universal Declaration on Human Rights, the International Covenant on Civil and Political Rights, the International Covenant on Social, Economic and Cultural Rights, and the European Convention on Human Rights, among other landmark decrees.3 Many of these documents refer to human dignity explicitly (for instance, the first three) or introduce it as the spirit of the law in judicial decisions, as does the ECtHR. According to the definition of disability in the CRPD, persons suffering from dementia belong to this group, so this document provides an initial framework for relevant legal regulation. Promotion of the “inherent dignity” (Art. 1) of persons with disability is identified as the purpose of this Convention. Furthermore, the first of its eight principles refers to “respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons” (Art. 3). The Constitution of Serbia (2006) identifies “the perseveration of human dignity and realization of full freedom and equality” as “the purpose of constitutional guarantees of human and minority rights… of every individual” (Art. 19). These  More about human dignity in international law in [24]; on human dignity in Serbia in [25].

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rights can be limited only if it is constitutionally permitted, according to the purpose defined by the Constitution, to the minimal extent necessary and if such action does not violate the substance of these rights (Art. 20). Courts in particular are charged with taking care to apply the minimal restriction possible. The dilemmas regarding the restrictions of the right to legal person has already been addressed in the first part of the chapter. The constitutional provision which allows the restrictions of the rights of a child according to their maturity alongside the lack of a precise provision enabling constitutional restrictions of the rights of other groups, makes the issue even more difficult. This situation is made even more perplexing by the mentioned fact that human dignity is constitutionally identified as the purpose of human rights. “Human dignity and free development of human personality” occupy the first place in the constitutional catalogue of human and minority rights in Serbia. Human dignity is guaranteed as intact (Ger. unantastbar) and everybody is obliged to respect and protect it. Furthermore, Article 69 defines the right to social protection as based on the principle of respect for human dignity and introduces the provision of special protection for disabled people. Apart from its mention in the Constitution, human dignity is also included in several laws particularly relevant to the rights of persons suffering from dementia. The LPMI calls for the respect for dignity of every person with mental impairment (Art. 5), the LHP decrees respect for “intact human dignity” (Art. 20), and the LSP introduces the principle of respect for the dignity and integrity of beneficiaries (Art. 24), which, according to this law, corresponds to the “moral, cultural, and religious convictions” of beneficiaries. Added to this, social protection institutions employees’ behaviors violating human dignity are prohibited (LSP, Art. 151). Furthermore, the LPD (Art. 23) introduces the right to dignified life conditions and life free of discrimination for elderly persons, while one of the principles of the LPDPD (Art. 2) concerns respect for the human rights and dignity of persons with disabilities. In cases of forced treatment, according to the CME (Art. 35), physicians are obliged “to respect the patient’s personality and dignity.” Moreover, the CME extends the duty to respect the human dignity of every patient even beyond the moment of death (Art. 6). Even with all of these policies in place, there is still the question of what exactly is required by the provision of respecting dignity. Namely, what does it mean that those suffering from dementia are to be respected? In the legal order of Serbia, dignity acquires multiple roles: it is a legal principle, a human right, and a legal value [24]. Along with its relative vagueness, its threefold role creates certain difficulties in understanding and applying this concept [24]. This is not only the case in judicial proceedings referencing the Constitution, but also in the law itself. Alongside Article 23 of the highest legal act, as well as according to Constitutional court practice, the prevailing interpretation of human dignity as a constitutional right relates to “the right to freely establish and develop physical, mental, emotional, and social life and identity” (Už 3238/2011, eighth March 2012) [24]. Yet dignity appears in various legislative contexts in which emphasis is also placed

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upon the prohibition of humiliation, appropriate working or life conditions (The CC, The Law on Prevention of Harassment at Work), and other related factors. Applied in this context, it follows that persons suffering from dementia should be guaranteed the right to freely develop and maintain their identity, as well as to not to be humiliated or harassed. Moreover, these guarantees would thereby be assumed to extend, up to a certain point, to dignified life conditions, since the great majority of persons suffering from dementia are indeed the elderly. Yet, if one seeks a more precise meaning of dignity, difficulties arise as soon as more exact questions are posed: Can respect for dignity be reconciled with the forced treatment of a person suffering from dementia? Can respect for dignity of persons with dementia be reconciled with locking them into their room or house in order to protect them? Does respect for dignity impose that in respecting the wish of a person suffering from dementia the current guardian or caretaker is replaced? Does the right to human dignity imply decriminalization of euthanasia when a person with late stage dementia is obviously deeply suffering and has explicitly expressed an unambiguous wish to end his/her life if ever brought to such a situation? The answers to these questions vary by country. According to the present CME, forced treatment and respect for human dignity can in certain circumstances be reconciled, while the LPPMI permits forced treatment not only when persons with mental impairments represent a threat to the safety of others, but also when their own health and safety are to be protected. To the CC, every mercy killing or aiding in suicide remains a criminal offence. In regard to guardianship, the FA does not grant that the simple dissatisfaction, verbally or nonverbally expressed, of a ward with the care provided by the guardian be the reason for their replacement; it only provides that a ward capable of judgment can suggest a guardian. Furthermore, a guardian is obliged to take care of the personality of ward conscientiously, yet despite the existing dignity protection clauses, it remains unclear as to whether such mandates legitimately authorize physically confining a ward to a room or home for the sake of the ward’s protection. All in all, the question remains as to whether there truly is a comprehensive concept of human dignity that can be applied to this context.

11.3.2 Human Dignity and Dementia In seeking a coherent notion of human dignity, a deeper look into the conceptual structures surrounding the idea of human dignity would seem to be called for. Yet what quickly becomes apparent in such a pursuit is that the discourse on human dignity is not a singular one—rather, there are varied discourses on this matter, situated in different philosophical and jurisprudential frameworks. Firstly, dignity clearly occupies an important place in contemporary law, despite being understood and interpreted in various, at times contrasting, ways. Some claim

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that human dignity protects the right to rights [26], or the universal legal status of human beings [27], while others view it as a constitutional concept embedded in a specific legal order [28], as a legal principle balanced with other principles so as to yield an absolute right [29], as a specific right with a restricted core and a more flexible margin [30], as a fundamental legal value [31], as a request for the balanced protection of different groups of rights [32], and so forth. In examining the concept within a wider philosophical framework, one encounters the concepts of capability of virtue and duty [33], the concepts of personality, subjectivity, autonomy, and reason [34], the connection between self-esteem, self-­ respect, recognition, and dignity [1], and the nexus between autonomy, authenticity, and dignity [35], dignity and identity [36], among other notions (see: [25]). Notwithstanding the differences in approach, it appears that two interpretational axes have particularly influenced the present-day understanding of human dignity in law, and thus impacted existing discussions [37]. The first one derives from contrasting the society of rank to the society of dignity and is based upon the idea of everyone possessing dignity solely upon the condition of being human. From this foundation follow the interpretations of dignity as a legal status, as a right to rights, as a universal prohibition of discrimination, and so forth. The other axis is centered on emphasizing the human in human dignity and is focused on the specific understanding of what being human means, implying unequivocally that equal treatment of all does not necessarily mean respect for human dignity. Rather, there are certain properties—such as virtue, reason, subjectivity, identity, self, and so forth—of a human being to be respected and enabled. These two axes of dignity have generated tensions, since the so-called essence of humanity can never be attributed to everyone. This has resulted in difficulties in interpreting the guarantees to equal protection, respect, and dignified conditions for everyone. The problem becomes acute in those cases of individuals or groups who obviously lack one or more of the aforementioned properties or possess it/them to a significantly less degree due to age (for instance, newborns), irregular brain development, some disease (late stage dementia), or for some other reason. Beyond this, the concept of dignity has also been interpreted in a more general and flexible manner, not limited in application only to humans as differentia specifica, but also as something that could be ascribed to other beings and phenomena. In this sense dignity is superordinate to the narrower concept of human dignity and refers to a general prohibition of the degrading. If human dignity understood as autonomy or subjectivity could hardly be applied to certain individuals, this is not the case with this more general concept. For instance, despite it being impossible to recognize or respect any clear, autonomous decision of newborns, it is undoubtedly possible to treat them as objects and degrade them. Contemporary law makes use of dignity in both senses, thereby creating difficulties in interpretation, yet also making room for their possible connection. Providing personal, environmental, and other types of support is sometimes enough to enable the bridging of these lacunas not only in cases of persons suffering from dementia [38], but also in cases of healthy individuals. Furthermore, the more general concept of dignity displaces the objectionable idea that rights and protection belong only to

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those attributed with “human dignity.” Yet, undoubtedly, applying the more general concept does not magically resolve the number of issues that still surround this concept, such as what exactly is meant by degrading for particular individuals or beings lacking some crucial cognitive capacities. Finally, it is rarely recognized that not only do degrading treatment and conditions, as well as stigma and exclusion, undermine dignity, but so does the disease itself. The loss of certain cognitive capacities leads inevitably to inabilities to pursue what one used to and what others can pursue. The inherent relevance of dependence in cases of dementia is such that the requirements of real care indeed transcend the realm of law. There is also the matter of the innate suffering of such conditions that does not stem from interpersonal relations or inadequate conditions. This suffering is related to physical and mental anguish just as much as it is to the shrinking of the world into an oft bewildering milieu [1, p.  190]. Dying patients—possessing a status that could perhaps also apply to those suffering from dementia while still aware—recognize three dignity axes [39, p. 435] in their situation—the final one related to the illness itself. It concerns the levels of independence which are related to “cognitive acuity and functional capacity” and symptoms of distress including “physical distress, psychological distress, medical uncertainty, and death anxiety” [39, p. 435]. Perhaps this axis could serve as a guidepost in the continued examination of dignity in the context of dementia. All in all, the complementing and integrating of medical and social perspectives should be favored instead of the contrasting of them as two independent paradigms. Human dignity is related to both, or, perhaps most aptly, to their unity.

11.4 Conclusion The legal status of persons suffering from dementia in Serbia is above all currently regulated by a set of anti-discriminatory rules, norms from the medical and social domains, the procedures for the removal of legal capacity, and the institution of guardianship. Supported decision-making is still not a legal option, even though environmental and personal support would certainly enable the overcoming of difficulties in certain cases, particularly when taking into account the different stages, fluctuations of cognition, and borderline statuses inherent to dementia. Furthermore, advance planning is restricted to the choice of another individual to give approval of a medical measure in the case of an individual judged to be incapable of making an autonomous decision. The CC categorically excludes the option of active euthanasia under all circumstances. The LSP envisages different available options of social intervention, but there is no current data on their application in cases of those suffering from dementia. Earlier research suggests a lack of accommodation and facilities affecting the group. Finally, a more systemic approach which would include a registry and detailed plan of actions directed at this specific group would undoubtedly prove beneficial. A number of norms relevant for the group include the request for respecting their dignity. Taking into consideration the prevailing use and interpretation of this legal

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concept in Serbia, certain difficulties in interpretation arise. Some of the most prominent are found in attempting to reconcile this requirement with forced treatment and forced placement in nursing homes, with the prohibition of active euthanasia under all circumstances, and with the removal of legal capacity. Beyond the context of Serbian law, contemporary legal and philosophical discourses on human dignity worldwide also still face challenges in dealing with many of the aforementioned issues. One reason for this is the twofold understanding of human dignity: the first concerns the universality of human dignity while the other is related to certain properties of humans. These properties usually include self-determination and self-identity, which in certain stages and circumstances of dementia could be attained through environmental and personal support. Yet, there are also individuals facing such serious deterioration of their capacities that there is no possibility of rational judgment, so the second meaning of human dignity could hardly be applied. In these cases, the more general idea of the duty not to degrade or downgrade could be referenced. A lack of rational judgment does not necessarily signify a lack of emotions, desires, and needs, nor does it connote the complete negation of communication or the absence of suffering. Succinctly, despite being an important moral and legal value, perhaps even an existentiale which fundamentally colors our experiencing of the world, human dignity is not an absolute foundation for all values, rights, and protections. Acknowledgments  I would like to thank the court management of the Basic Court in Novi Sad for the opportunity to investigate its court practice and consequently carry out an important part of this research.

References 1. Ricoeur P. Reflections on the just. Chicago: The University of Chicago Press; 2007. 2. World Health Organization. 2016. International statistical classification of diseases and related health problems. 10th edn. Geneva: WHO. 3. Bergson H. Matter and memory. London: George Allen and Unwin; 1911. 4. Levine C.  Depression in caregivers of patients with dementia. J Gen Intern Med. 2003;18(12):1058–9. https://doi.org/10.1111/j.1525-­1497.2003.31003.x. 5. Omranifard V, Haghighizadeh E, Akouchekian S.  Depression in main caregivers of dementia patients: prevalence and predictors. Adv Biomed Res. 2018;7:34. https://doi. org/10.4103/2277-­9175.225924. 6. Nadežda S, Aleksandra MK. Život bez sećanja. 2014. http://www.amity-­yu.org/wp-­content/ uploads/2017/02/zivot_bez_secanja_istrazivanje_potrebe_za_dnevnim_centrom_za_ dementne_amity.pdf. Accessed 25 June 2019. 7. Dementia statistics hub. Alzheimer’s research UK. https://www.dementiastatistics.org/statistics/global-­prevalence/. Accessed 25 Augt 2019. 8. Draškić M.  Novi standardi za postupak lišenja poslovne sposobnosti  - aktuelna praksa Evropskog suda za ljudska prava. (New standards for removal of legal capacity procedure – current practice of ECtHR). Anali Pravnog fakulteta u Beogradu. 2010;58(2):355–70. 9. Beker K, Milošević T.  Poslovna sposobnost. (Legal Capacity). Beograd: MDRI-S. 2016. https://www.mdri-­s.org/wp-­content/uploads/2017/01/Sudska-­praksa-­i-­zakoni.pdf. Accessed 25 June 2019.

196

D. Franeta

10. Lazarević S, Dragana MĆ, Lea Š. Univerzalnost prava u praksi. Beograd: MDRI-S and People in Need; 2012. https://www.mdri-­s.org/wp-­content/uploads/2013/03/univerzalnost-­prava-­u-­ praksi.pdf. Accessed 25 June 2019. 11. Legal capacity of persons with intellectual disabilities and persons with mental health problems. Luxembourg: Publications Office of the European Union; 2013. https://fra.europa. eu/sites/default/files/legal-­capacity-­intellectual-­disabilities-­mental-­health-­problems.pdf. Accessed 25 June 2019. 12. Satarić N, Milićević-Kalašić A, Ignjatović T. Obespravljeni iz neznanja. 2013. https://www. womenngo.org.rs/images/publikacije-­dp/2013/Obespravljeni_iz_neznanja.pdf. Accessed 25 June 2019. 13. World Health Organization. International classification of impairments, disabilities and handicaps. 1980. https://apps.who.int/iris/handle/10665/41003. Accessed 25 June 2019. 14. Gooding P. Supported decision making: a rights-based disability concept and its implications for mental health law. Psychiatry Psychol Law. 2013;20/3:431–51. https://doi.org/10.108 0/13218719.2012.711683. Accessed 25 Aug 2019 15. Commissioner for Human Rights. Who gets to decide? 2012. https://rm.coe.int/16806da5c0. Accessed 25 Aug 2019. 16. Bradshaw J, Saling M, Hopwood M, et  al. Fluctuating cognition in dementia with Lewy bodies and Alzheimer’s disease is qualitatively distinct. J Neurol Neurosurg Psychiatry. 2004;75:382–7. https://doi.org/10.1136/jnnp.2002.002576. 17. Bosboom J, Stoffers D, Wolters E. Cognitive dysfunction and dementia in Parkinson’s disease. J Neural Transm. 2004;111:1303. https://doi.org/10.1007/s00702-­004-­0168-­1. 18. Meyer J, Rogers R, Judd B, et al. Cognition and cerebral blood flow fluctuate together in multi-­ infarct dementia. Stroke. 1988;19(2):163–9. 19. Dubois B. Preclinical Alzheimer’s disease: definition, natural history, and diagnostic criteria. Alzheimer’s Dement. 2016;12(3):292–323. https://doi.org/10.1016/j.jalz.2016.02.002. 20. Republički zavod za socijalnu zaštitu. Izveštaj o radu centara za socijalni rad za 2017. 2017. http://www.zavodsz.gov.rs/media/1423/izvestaj-­o-­radu-­csr-­2017rzsz.pdf Accessed 28 Aug 2019. 21. Stefanova E, Pekmezović T, Nalić D, Kostić V.  The diagnosis of dementia is unspecified  – report of a pilot survey of dementia in Belgrade. Gerontology. 2004;50:260–1. 22. Kostić V. Opening speech to symposium of Serbian Academy of Science and Arts “Update on Dementia”. 2019. http://rtv.rs/sr_lat/zivot/zdravlje/u-­srbiji-­dementno-­do-­10-­odsto-­ljudi-­ posle-­65-­godina-­starosti_1006806.html. Accessed 25 Aug 2019. 23. McGettrick G.  Dementia, rights and the social model of disability. London: Mental Health Foundation; 2015. https://www.mentalhealth.org.uk/sites/default/files/dementia-­rights-­policy-­ discussion.pdf. Accessed 29 July 2019 24. Franeta D. Human dignity in Serbia. In: Becchi P, Mathis K, editors. Handbook on human dignity in Europe: Springer; 2019. p. 1–19. 25. Franeta D. Ljudsko dostojanstvo kao pravna vrednost (Human dignity as legal value). Beograd: CII; 2015. 26. Enders C. Die Menschenwürde in der Verfassungsordnung. Tübingen: Mohr Siebeck; 1997. 27. Waldron J.  Dignity, rank and rights. 2009. https://tannerlectures.utah.edu/_documents/a-­to-­z/w/Waldron_09.pdf. Accessed 25 Aug 2019. 28. Barak A.  Human dignity: the constitutional value and the constitutional right. Cambridge: Cambridge University Press; 2015. 29. Alexy R. Theorie der Grundrechte. Frankfurt am Main: Suhrkamp; 1994. 30. Herdegen M.  Kommentierung zu Art. 1 GG.  In: Theodor M, et  al., editors. Grundgesetz Kommentar. München: C. H. Beck, Loseblattsammlung; 2010. 31. Dürig G.  Der Grundrechtssatz von der Menschenwürde. Archiv des öffentlichen Rechts. 1956;8:117–57. 32. Habermas J. Das Konzept der Menschenwürde und die realistische Utopie der Menschenrechte. In: Habermas J, editor. Zur Verfassung Europas. Ein Essay. Berlin: Suhrkamp; 2011. p. 13–38. 33. Cicero MT. De officiis. Cambridge: Harvard University Press; 1913.

11  Legal Status and Dignity of Persons Living with Dementia in Serbia

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3 4. Kant I. Metaphysik der Sitten. Frankfurt a. M.: Suhrkamp; 1977. 35. Dworkin R. Justice for hedgehogs. Harvard: Harvard University Press; 2013. 36. Tiedemann P. Was ist Menschenwürde? Darmstadt: WBG; 2006. 37. Franeta D. Ljudsko dostojanstvo i problem neprikosnovenosti. Hereticus XV. 2015;3(4):62–73. 38. Wied T, Knebel M, Tesky V, Haberstroh J.  The human right to make one’s own choices  – implications for supported decision-making in persons with dementia: a systematic review. Eur Psychol. 2019;24(2):146–58. 39. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. Dignity in the terminally ill: a developing empirical model. Soc Sci Med. 2002;54(3):433–43.

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Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa: Addressing the Risk of Stigma Andrea C. Palk and Dan J. Stein

Contents 12.1  I ntroduction 12.2  B  ackground 12.3  D  ementia Stigma in Sub-Saharan Africa 12.3.1  Conceptual Interpretations of Dementia-Related Stigma 12.3.2  Dominant Explanatory Models of Dementia-Related Symptoms in Sub-Saharan African Contexts 12.3.3  The Possible Impact of Biogenetic Explanatory Models of Dementia on Stigma 12.3.4  Relational Conceptions of Personhood and Dementia Stigma 12.4  Recommendations for Minimising Stigma-Related Risk in Genomic Studies of Dementia in Sub-Saharan African Contexts 12.4.1  Ensuring That Consortia or Multi-Site Studies Have Dedicated Ethics Working Groups 12.4.2  Prior and Ongoing Community Engagement 12.4.3  Collaboration with Non-Specialized Health Care Providers 12.5  Concluding Remarks References

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A. C. Palk (*) Department of Philosophy, Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] D. J. Stein Department of Psychiatry and Neuroscience Institute, SA MRC Unit on Risk and Resilience in Mental Disorders, University of Cape Town, Cape Town, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_12

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Abstract

Recent estimates of the prevalence of dementia in Sub-Saharan Africa indicate that it is set to increase considerably. There is therefore an urgent need for large-­ scale studies of dementia risk factors in this context, including genomic studies of the most common form of dementia, late-onset Alzheimer’s disease. While studies have increased our knowledge of the genetic architecture of late-onset Alzheimer’s disease, there is significant underrepresentation of populations with African ancestry. This underrepresentation has ethical implications, given the long-term potential of genetic knowledge for predicting risk, improved diagnosis, and possibly novel treatment approaches for Alzheimer’s disease. Such studies may, nevertheless, pose indirect risks to participants in contexts where the symptoms associated with dementia are highly stigmatized. On the other hand, large-scale studies may offer unique opportunities to address dementia stigma through providing the infrastructure for further empirical ethics research, community engagement and collaboration with nonspecialized health care providers, including traditional and faith healers. In this chapter, we commence with an introduction of relevant background to frame these issues, followed by an overview of conceptual interpretations of dementia-related stigma and dominant explanatory models of dementia-related symptoms in sub-Saharan African contexts, with special attention paid to a prevalent explanatory model that links dementia symptoms with malevolent spiritual causes such as witchcraft. Given that genomic studies are often premised on a biogenetic model of disease, we then look at findings from studies that have assessed the impact of such explanatory models on stigma. In particular, we highlight the possibility that biogenetic approaches to mental disorder may be interpreted in essentializing and dehumanizing ways in sub-Saharan African contexts. We then outline some commonalities in Afro-Communitarian moral frameworks and the implications for a deeper understanding of dementia stigma. We conclude with some suggestions of ways in which large-scale genomic studies can avoid exacerbating dementia stigma.

12.1 Introduction Recent estimates of the prevalence of dementia in Sub-Saharan Africa indicate that it is set to increase considerably [1]. Given the substantial economic and social burdens associated with dementia, there is an urgent need for large-scale studies of the risk factors associated with dementia in this context. While there are different forms of dementia, the most common form, late-onset Alzheimer’s Disease, is polygenic, with risk conferred, in part, by interactions between many genes of small effect [2]. Genome-wide association studies and next-generation sequencing have increased our knowledge of the genetic variants associated with late-onset Alzheimer’s disease and other complex disorders and traits. This knowledge may

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have implications for risk prediction, improved diagnosis and, possibly, for developing novel treatment approaches for Alzheimer’s disease. However, such studies have mostly been conducted in high-income countries and have predominantly included samples from populations with European ancestry. As a result, knowledge of the genetic architecture of Alzheimer’s disease in other populations is less advanced [3]. In particular, populations with African ancestry are significantly underrepresented in genomic studies [4]. This underrepresentation has ethical implications, considering the potential long-term benefits of genetic knowledge. However, while there is a clear need to increase the diversity of these studies, there are also ethical concerns associated with conducting dementia-related research in sub-Saharan African contexts that must be considered. Of particular concern is that dementia is subject to high levels of stigma, or harmful preconceptions, in certain parts of sub-Saharan Africa [1]. This is attributable, in part, to the nature of explanatory models in certain contexts, which ascribe the symptoms of dementia to malevolent spiritual causes such as witchcraft [5]. Participating in genomic studies, which require extremely large sample sizes of persons who have been identified as having the disorder in question (cases) and persons without the disorder (controls), may expose persons with dementia to greater risk of stigma-related harms. This is because genetic information has a tendency to be interpreted by lay-persons in reductionistic ways, therefore, communicating information about such research to participants and communities risks giving credence to these spiritual explanatory models that tend to essentialize persons living with dementia. On the other hand, such large-scale studies can minimize, or even alleviate, dementia stigma through providing the infrastructure for empirical ethics research, community engagement and collaboration with non-specialized health care providers, including traditional or faith healers. Careful consideration will, however, be required in terms of the way in which information about the nature of such studies is framed and communicated to health care providers involved with recruitment, research participants and their families and caregivers, as well as how it is disseminated in communities in general. In this chapter we discuss what we take to be one of the major ethical challenges facing genomic studies of dementia in Sub-Saharan Africa, namely, understanding and addressing risks related to dementia stigma in these contexts. In the first section we discuss relevant background, including the genetics of late-onset Alzheimer’s disease. This is followed by an overview of conceptual interpretations of dementia stigma and dominant explanatory models of dementia-related symptoms in sub-­Saharan African contexts. Given that genomic studies are premised on a biogenetic model of disease, we then look at findings from studies that have assessed the impact of such explanatory models on stigma. In particular, we highlight the tendency for biogenetic explanatory models of mental disorder to be interpreted in essentializing and dehumanizing ways. We then outline some commonalities in Afro-­Communitarian moral frameworks and the implications for a deeper understanding of dementia stigma. We conclude the chapter with suggestions of ways in which genomic studies can take care to ensure that dementia stigma is not exacerbated.

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12.2 Background “Epidemiological transition” refers to structural population changes brought about by development, particularly improved social and economic conditions [6]. This includes increased life expectancy and, with it, population aging, as well as an increase in non-communicable diseases, often associated with unhealthy lifestyle changes [7]. While this is a global phenomenon, it has been posited that sub-­ Saharan Africa (SSA) will be particularly affected by population aging, given that various countries in the region already have rates of growth of older persons that are the fastest in the world [1]. The number of people over 60 years in SSA increased from 23 million in 1990 to 46 million in 2015 and is estimated to reach 161 million in 2050 [8]. Concomitant with population aging is an increase in age-related diseases such as dementia [9]. While conclusive evidence regarding the prevalence of persons with dementia in SSA is lacking, estimated increases indicate that dementia will pose considerable burdens to the region in the future [1]. This is particularly concerning because SSA is already challenged by a high prevalence of communicable diseases, insufficient, and overburdened, health care services, and high levels of poverty. Based on a meta-analysis of various studies conducted in SSA, it has been estimated that in 2015 there were 2.13 million people with dementia and that by 2030 this figure will have grown to 3.48 million, and 7.62 million by 2050 [1]. The total cost of dementia to the region in 2015 was estimated to be US$6.2 billion, with $1.2 billion (19.7%) spent on direct medical costs, $0.6 billion (9.7%) on direct social sector costs and $4.3 billion (70.6%) on informal care costs [1]. While there are various forms of dementia, Alzheimer’s disease (AD) is the most common form, accounting for approximately 60–70% of all cases of dementia [10]. Of the various forms of AD, late-onset Alzheimer’s disease (LOAD), also referred to as sporadic AD, occurring after 65 years, is the most common form. The rarer, familial, early-onset Alzheimer’s disease (EOAD), occurring before age 65 years, accounts for only 1–6% of all cases of the disease [11]. There is growing evidence that LOAD is highly heritable, with twin studies indicating that the liability attributable to genetic underpinnings is between 60% and 80% [12]. However, in comparison with certain rare forms of EOAD, which follow an autosomal dominant pattern of inheritance, LOAD, along with many other complex disorders, is polygenic or multifactorial [11, 13]. While the ε4 polymorphism in the Apolipoprotein E (APOE) gene on chromosome 19 is a major genetic risk factor for AD, only 50% of cases of AD carry this polymorphism, indicating that there are other genes that confer risk [13]. Genome-wide association studies (GWAS) and next-generation sequencing have indicated that genetic susceptibility to LOAD is conferred by interactions between numerous common genetic variants1 of small effect along with rare or copy

1  Common genetic variants or alleles are single nucleotide polymorphisms (SNPs) present in more than 1% of the population whereas rare variants or mutations are found in less than 1% of the population.

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number variants,2 interacting with environmental influences [13]. So far, over 20 genetic loci that confer risk for LOAD have been identified, accounting for a modest proportion of the heritability [2, 15]. However, it has been posited that additional loci will be revealed as sample sizes continue to increase and a new meta-analysis is possible [16]. There are several potential advantages of increased knowledge of the genetic factors that contribute towards susceptibility for developing LOAD.  Initially, the most likely outcome of this knowledge will be improved diagnostic accuracy and identification of individuals who are at higher risk for developing LOAD [2]. This could then ensure that high risk individuals are enrolled in “subgroup prevention programs” [17], focused on mitigating modifiable risk factors that have been identified, including diet and obesity, smoking, depression, lack of physical activity and adequate cognitive stimulation, diabetes and hypertension, among others [18, 19]. In the longer-term, information about the genetic substrate of LOAD may have implications for the development of new treatment approaches that target different molecular pathways, in keeping with the move towards precision medicine [2]. This is important because there is currently no cure for dementia; treatment focuses on maintaining functional performance of persons with dementia and preserving their quality of life, while attempting to shorten the period of incapacitation characteristic of late stages of the disease [20]. While there have been extensive studies of the genetic basis of LOAD in populations with European ancestry, other populations, and in particular, populations with African ancestry, have been significantly underrepresented in these studies [3] and in GWAS in general [4, 21]. It is important that genetic studies include diverse populations because the genetic factors involved in conferring disease risk and their effect sizes exhibit considerable differences between populations [22, 23]. For example, the effects of variants of the APOE gene, and in particular the ε4 allele and other identified loci, on risk for LOAD differ across populations [3]. Any knowledge generated by studies that include predominantly European ancestry populations may therefore not be generalizable to other populations [24]. Insofar as these studies lead to beneficial health outcomes, this lack of diversity in genetic studies has been identified as a risk for increasing health inequities between populations [25, 26]. For these reasons, we contend that there is a strong need to conduct large-scale genomic studies of LOAD in African populations.

12.3 Dementia Stigma in Sub-Saharan Africa While such studies are needed, they may pose indirect risks to participants due to the fact that the symptoms and behaviours associated with mental disorders in general, and dementia in particular, are subject to particularly high levels of stigmatization in certain sub-Saharan African contexts [1]. The latter claim is supported by 2  Copy number variants (CNVs) are micro-deletions or duplications of regions of DNA that vary in size. They can be inherited or arise spontaneously (de novo) [14].

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reviews of various qualitative studies focusing on the lived experience of persons with dementia in sub-Saharan Africa, in which dementia-related stigma emerged as a prominent theme [1, 5], anecdotally, by numerous media accounts [27–30] and by various healthcare professionals working in the field of dementia [31, 32] . Such studies therefore pose a dilemma. On the one hand, they will add to knowledge about the genetic architecture of AD in general, and in neglected populations in particular, and may lead to clinical benefits for persons with dementia in the future. On the other hand, participation will have very little direct benefit and may result in stigma-related harms for participants, and their families or caregivers, who already face severe challenges. Given that genomic studies require large-scale participation of persons who have been identified as having the disorder or disease in question, more studies are needed to ascertain the most effective way of communicating information about the nature of genomic research of dementia to health care providers, research participants and their families and caregivers, and to communities in sub-Saharan African contexts, in order to avoid exacerbating stigma. There are several factors that require consideration in gaining a deeper understanding of dementia-related stigma in SSA and how this may be impacted by genomic studies.3 First, the nature of stigma itself in terms of its constitutive elements and how these may manifest in dementia-related stigma. Second, the nature of dominant explanatory models of dementia in SSA, particularly models which associate dementia symptoms with malevolent forces such as witchcraft. Third, findings from studies that have assessed the impact of biogenetic explanations on stigma associated with mental disorders, and the implications of these findings for the explanatory models discussed in the previous point. Fourth, commonalities in relational or communitarian conceptions of personhood in SSA and how these may impact dementia-related stigma in such contexts.

12.3.1 Conceptual Interpretations of Dementia-Related Stigma Since Goffman’s seminal work, Stigma: notes on the management of spoiled identity [33], the phenomenon of stigma has been studied extensively, both conceptually and empirically. Stigma takes various forms, such as internalized or self-stigma, public or social stigma, and associative or courtesy stigma that is directed towards family members or caregivers of stigmatized persons. Given these various forms, it is useful to understand stigma in terms of its elements. First, it involves stereotyping, which may be defined as learned “social knowledge structures” [34] that produce beliefs about members of stereotyped groups. Second, if such beliefs are

3  While our discussion is focused on dementia stigma in SSA, it must be noted that this region is characterized by considerable cultural diversity. Because of this, generalizations about beliefs and attitudes towards dementia and stigma must be made with caution. However, we contend that there are, nevertheless, certain commonalities and relevant contextual factors, as evidenced in various empirical studies that have been conducted in different African contexts, that are sufficiently present for certain generalizations to be made.

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unreflexively endorsed, they may lead to prejudice, referring to negative attitudes associated with affective responses (e.g. fear, revulsion or anger) and cognitive responses that lead to negative moral judgements (e.g. persons with dementia are to be feared, they are incompetent or weak, or they are responsible in some way for their illness) [34]. Prejudice may then lead to the third element, discrimination, which can be indirect or passive (e.g. avoidance or withholding help or support), may support paternalism (e.g. coercive treatment or care), or, may be more direct or active (e.g. physical violence towards stigmatized persons) [34]. Thornicroft et al. also define stigma in terms of “problems of attitudes (prejudice), and problems of behaviour (discrimination)”, however, rather than identifying the specific element of stereotyping, they opt for the more general “problems of knowledge (ignorance)” [35]. Link and Phelan similarly define stigma in terms of the presence of certain elements. They posit that it comprises “the co-occurrence of its components—labelling, stereotyping, separation, status loss, and discrimination” [36]. Separation and status loss, in particular, capture something significant in terms of the desire for social distance that is frequently cited in empirical studies of stigma [37]. A deeper understanding of the formative elements of dementia-related stigma (beliefs and attitudes) in SSA is important for devising interventions that aim to counteract it. While there have been numerous empirical studies that have identified and assessed beliefs and attitudes about dementia in high-income countries (HICs) (see [38, 39] for systematic reviews), there have been minimal studies of this nature on the African continent. Moreover, there has been surprisingly little conceptual or theoretical engagement with dementia stigma in its own right [40]. This may be because there is much consistency in the way that stigma manifests and is experienced in general. However, stigma associated with dementia arguably presents its own distinct, or at least intensified, challenges related to the progressive nature of the disease and the way it intersects with other sources of stigma. For example, in the case of LOAD and other age-related dementias, it is likely that distinct stigmatizing beliefs about those with dementia interact with age-related prejudice, also known as “ageism” [40]. The latter may lead to age discrimination which has been defined as “the systematic and institutionalized denial of the rights of older people on the basis of their age by individuals, groups, organisations and institutions” [41] or more serious forms of discrimination, such as elder abuse [42]. An example of age discrimination would be a lack of adequate care and resources for older persons, including minimal research that focuses on age-related diseases such as LOAD [43]. Persons with dementia therefore face “double discrimination” to the extent that their lives are impacted by both dementia and age-related stigma [40].

12.3.2 Dominant Explanatory Models of Dementia-Related Symptoms in Sub-Saharan African Contexts In what is believed to be the first systematic review of qualitative evidence of the lived experience of persons with dementia and various key parties involved in their care, as well as members of local communities in SSA, only ten studies

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qualified for inclusion [1]. Five of these studies were conducted in South Africa, two in Tanzania and one in Nigeria, Ghana and Republic of Congo respectively. Thematic analysis revealed four broad themes. First, there were commonalities in beliefs about dementia. This included a lack of knowledge or awareness of dementia as a disease; in many contexts no term exists in the local language to describe dementia. Distinct beliefs about the causes of symptoms and behaviour associated with dementia included beliefs that dementia is caused by normal aging, by various stressors, or by witchcraft. Second, findings revealed commonalities in experiences of dementia symptoms and their negative impact on the lives of both persons with dementia and key parties involved in their care. Negative experiences also included stigma-related harms, ranging from a lack of respect and teasing, to accusations of witchcraft due to the odd behaviours and symptoms of persons with dementia. In some cases, such accusations led to violence towards persons with dementia, including the destruction of their homes. Third, common responses to dementia included how challenges associated with the care of persons with dementia are met and which sources of help are sought. In the case of the former, care was found to be a shared family responsibility, while help tended to be sought from both traditional or faith healers and allopathic healthcare services. In cases where spiritual explanatory models were dominant, however, traditional or faith healers were regarded as a more appropriate source of help. Finally, commonalities regarding unmet needs were identified, including suggestions about how these factors could be addressed. Such needs included practical, financial and psychological support for caregivers to enable them to meet the needs of those with dementia and calls to provide knowledge and education about the disease to communities. The former is important in light of the fact that, with the exception of South Africa, findings indicated that care for persons with dementia takes place solely in the context of the family and the home due to a lack of care facilities for such persons [1]. In addition to the qualitative studies reviewed by ADI, the few quantitative studies that have been conducted have focused explicitly on beliefs, attitudes and knowledge of dementia in various African contexts [44–46]. Explanatory models of disease in SSA, referring to culturally informed causal beliefs and attitudes about illness, are particularly important for gaining a deeper understanding of the sources of stigma and their implications for the kind of help that is sought, e.g. traditional or faith healers as opposed to allopathic healthcare services. In particular, the findings of various studies regarding the lack of knowledge about dementia as a disease or medical condition and the absence of terms in local languages for dementia are areas where educational interventions may have success [45–51]. However, despite the clear need for such educational interventions, there is evidence that commonly held beliefs about dementia as a normal part of the aging process correlate with less fear and hostility towards persons with dementia than conceptions that associate symptoms with supernatural, malevolent causes such as witchcraft [46, 47, 49, 51, 52]. This is an important finding because while dementia is a disease with clear pathophysiology, rather than an inevitable or normal function of old age, a biogenetic explanatory model which frames dementia as a naturally occurring part

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of aging may offer protection to persons at risk of active or direct discrimination, in contexts where high levels of discrimination are a product of supernatural causal ascriptions [1]. The fear associated with a belief in witches is widespread throughout SSA. The findings of Gallup surveys conducted in 18 African countries, based on 18,000 face-­ to-­face interviews, showed that an average of 55% of participants held some form of belief in witchcraft [53]. While the nature of beliefs about witchcraft vary across SSA, being labelled a witch or being associated with witchcraft is a uniformly negative ascription throughout the region. In general, a belief about witchcraft can be regarded as a “theory of misfortune” whereby persons believed to be witches or under the control of witches (bewitched “zombies”) are regarded as causally responsible for any form of misfortune experienced by communities [54]. Thus, in cases where violence is meted out to persons believed to be witches, this response is frequently framed as a form of protection and permissible retribution [54]. Generally, persons who exhibit inexplicable or feared behaviours are most vulnerable to accusations of witchcraft. This would include symptoms not only of dementia, such as confusion, memory loss, aggression, disinhibition and wandering, but also symptoms associated with other mental or neurological disorders which have significant impacts on behaviour (e.g. epilepsy, Parkinson’s disease and Huntington’s disease) [5]. There are limited figures regarding the number of persons suspected to be witches who are killed on a yearly basis in SSA, given the fact that such killings are seldom reported, however it is likely that the number is considerable [50]. Tanzania, in particular, has experienced a substantial rise in witch-related killings, as evidenced by the findings of a report conducted by the Legal and Human Rights Centre in Dar es Saalam claiming that in the first 6 months of 2017 alone, 479 deaths were attributed to “mob justice”, including persons believed to be witches [55]. In West Africa, accusations of witchcraft frequently lead to exile in one of the region’s “witch camps”, which offer some protection but are characterized by extreme poverty [56]. In South Africa where belief in witches is particularly widespread, organizations such as the South African Pagan Rights Alliance (SAPRA) have been formed, in part, to advocate against the human rights violations associated with witch-hunts [57]. SAPRA have compiled a list of all known victims of witch-hunts since 2000, based on published reports [58]. The very existence and clear need for such an organization indicates the seriousness of being labelled a witch. While associations between dementia symptoms and witchcraft are not ubiquitous in all study findings, where such beliefs are held, they generally lead to strong stigmatization of persons with dementia [1, 5]. Even in cases where symptoms are associated with bewitchment or possession, this may be regarded as warranted punishment, or a curse from God or the ancestors for some wrongdoing on the part of the bewitched [45, 49, 59]. The stigma associated with dementia symptoms mostly manifests in fear and avoidance or outright violence, e.g. in South Africa, persons believed to be witches (generally older women) are at risk of being “bullied, ostracised, beaten, stoned, burned, even killed” [50]. As mentioned above, this “retaliation” is frequently justified by the belief that such persons are the source of social misfortune and suffering.

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12.3.3 The Possible Impact of Biogenetic Explanatory Models of Dementia on Stigma In all but one of the studies analysed in the ADI review, there was no mention of biogenetic (encompassing genetic, neurobiological and/or biological) or biomedical understanding of dementia [1]. This is pertinent in light of conflicting evidence regarding the impact of biogenetic explanations on attitudes and beliefs about mental disorders in general [60] and the paucity of studies of this nature that have been conducted in African contexts. In other words, it is not clear how information about the nature of genomic studies of dementia, communicated in terms of a biogenetic model, will be interpreted in the context of community engagement and the research process and what the implications for stigma might be. Here, there is some evidence from a study that focused on the potential of the use of ethnic data in genomic studies in Africa to increase ethnic group stigmatization. The concern here is that the results of genomic studies, through indicating that certain ethnic groups have genetic susceptibility or resistance to particular diseases, disorders or traits, could be used to entrench perceptions of differences between groups [61]. The study found that there is only a risk of stigma-related harm (referring here to “damage to the reputation, integrity or social status…[of particular groups, that results in] shame and isolation” [61]), in cases where such studies include populations or groups already subject to stigmatization or discrimination, or are focused on stigmatized diseases or disorders [61]. Participants hypothesized that this would likely include ethnic group susceptibility to HIV/AIDS, sickle cell disease, epilepsy, podoconiosis, disorders with behavioural effects and sensitive traits such as intelligence that may be interpreted as indicating superiority or inferiority of certain groups [61]. While dementia was not mentioned specifically in this study, it would be related to the findings about disorders or conditions with behavioural effects. Thus, we can tentatively infer from these findings that in contexts where dementia symptoms are not subject to stigmatization, such studies are unlikely to pose risk to participants, in terms of causing stigma to arise. However, while it is difficult to predict precisely what effect biogenetic models of dementia would have, there is a strong risk that the communication of such models in the context of genomic studies may exacerbate stigma in contexts where dementia symptoms are stigmatized and spiritual explanatory models are particularly entrenched. There is therefore a compelling need not only for more scientific studies of the risk factors involved in dementia in SSA contexts, including genetic studies, but also for studies focusing specifically on the impact of biogenetic explanations on beliefs about dementia (and on spiritual explanatory models in general). It has been hoped that biogenetic explanatory models of disorder, by correcting mistaken beliefs or causal attributions, would assist in lessening the high levels of stigma associated with mental disorders. Systematic reviews and meta-analyses of various studies have, however, delivered mixed results [60, 62–64]. Where stigma is associated with the perception that the person in question is responsible in some way for their stigmatized condition or behaviour, biogenetic explanations have been shown to decrease ascriptions of responsibility for certain disorders (e.g. alcohol

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dependence) and thus negative attitudes [65]. However, in the case of other mental disorders (e.g. schizophrenia and depression) biogenetic explanations have been suggested to exacerbate stigma, reflected in terms of an increased desire for social distance from such persons due to fear or perceptions of their “otherness” [65]. This is because biogenetic explanations seem to have a double effect, also referred to as the “mixed-blessings model” [66]. On the one hand, they increase deterministic interpretations of mental disorders (e.g. the view that a person’s genes or neurobiology are causally responsible for their behaviour or decrease their agency to an extent that it is unfair to blame them). On the other hand, they also feed into essentialist interpretations (e.g. framing a mental disorder as a “biological” disease informs the view that it is an integral and enduring part of who a person is—their essence—rather than considering the vital role played by psychosocial factors) [60, 63]. In the case of mental disorders for which interventions or treatments exist, one concern is that essentialist interpretations may lead to prognostic pessimism, which is the view that a disorder or disease is an immutable part of the person in question and will not be amenable to treatment or improvement [60]. While prognostic pessimism is arguably unavoidable in the case of a neurodegenerative disease such as dementia, to the extent that essentialization produces negative effects for persons with dementia, e.g. avoiding seeking help and support because of a sense of futility, or deprioritizing their care and support, it is important to ensure that the communication of biogenetic information does not feed into such interpretations. Another implication of the tendency of biogenetic explanations to be interpreted in essentializing ways is that such interpretations may lead to dehumanization of the person in question, particularly in the case of mental disorders [60]. Given prevailing interpretations of dementia as eradicating identity or impacting personhood [67, 68], dehumanization is an important phenomenon to consider. It has been posited that two forms are prevalent: animalistic and mechanistic dehumanization, based on two conceptions of “humanness” [69]. In the case of the first, the higherorder qualities that distinguish persons as a species from animals are denied for dehumanized persons [69, 70]. This form of dehumanization may be operational in findings where persons with dementia are treated disrespectfully, patronized or ridiculed rather than directly harmed [47, 52, 71]. Such treatment implies that the person with dementia is regarded as having a lowered moral status. In the case of the second form of dehumanization, qualities that are regarded as integral to personhood are denied to dehumanized persons, resulting in their exclusion from a moral community [69]. The primary difference between these two conceptions of dehumanization is that the first form is associated with qualities found only in the human species, whereas in the case of the second, qualities integral to personhood may also be displayed by non-human animals. This accords with the fact that we ascribe personhood to certain animals, such as the great apes, on account of their possessing higher-order capacities that we regard as mirroring our own. In the case of the second form, dehumanization occurs if a person or group is regarded as akin to an object, machine, or automata; not even human or animal. With both forms of dehumanization, interpretations of the differences or absence of valued qualities in question are the basis

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for regarding such persons as inhuman and thus excluding them from the ambit of moral concern. However, the second form of dehumanization is potentially more devastating, in terms of its impact, when coupled with “delegitimizing beliefs” which attribute highly disvalued and feared qualities to dehumanized persons e.g. regarding them as malevolent, supernatural entities, such as witches in the case of dementia [72]. In such cases, dehumanization takes the form of demonization and results in “moral disengagement”, whereby violence towards demonized persons is morally justified or made “socially acceptable” by being framed as a social good or moral act [73]. Dehumanizing or demonizing interpretations of persons with dementia are clearly present where explanatory models inform the belief that they are witches. However, given evidence that biogenetic information has a tendency to be interpreted in essentializing ways, the concern is that perceptions of biologically based difference may further concretize pre-existing forms of dehumanization. This concern bears consideration in terms of the hope that providing knowledge and education about the biogenetic basis of dementia is the panacea to eradicating stigma. Correcting mistaken beliefs about the aetiology of dementia is undoubtedly important insofar as this can alleviate fear and hostility associated with supernatural causal attributions. However, given the fact that our knowledge of aetiology is far from complete, reflected in the lack of available biomedical interventions and the way that biogenetic explanatory models have been shown to increase essentialization in other contexts where their effects have been studied, care must be taken in how this information is communicated [1]. Moreover, biogenetic explanations interpreted as proximal to the disease or trait in question are reconcilable with distal supernatural origins, thus their ability to mitigate the effects of such beliefs may be more challenging than envisaged. This hypothesis is supported by study findings indicating that in some cases participants believed dementia to be a product of witchcraft while also regarding it as a medical condition [5]. Given the prevalence of supernatural causal ascriptions in many SSA contexts, including the deeply entrenched nature of beliefs in witchcraft, it is clear that studies are needed to identify how biogenetic interpretations relate to the former.

12.3.4 Relational Conceptions of Personhood and Dementia Stigma Prevailing moral frameworks4 also bear consideration in the case of understanding and addressing the roots of dementia stigma associated with essentialization, dehumanization and witchcraft beliefs in SSA. Mkhonto and Hanssen describe the use of power for malevolent purposes by witches as a theme that is historically rooted 4  Here, we use the term moral framework in a normative sense, referring to guiding ideals, i.e. moral beliefs of what is right and wrong which inform how one should act.

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in “African collectivistic culture where the origin of misfortune is perceived to be social” [50]. In other words, negative events are more likely to be interpreted through a socio-moral lens, whereby hardship or suffering are perceived to be caused by an intentional force or ill-will, rather than regarded as the product of random events or amoral forces. A substantive discussion of what is meant by “African collectivistic culture” is beyond the scope of this chapter, given the sheer cultural diversity in this region. However, in the same way that it is coherent to speak of a Western liberal individualist moral framework and have a sense of what this implies, it is equally coherent to speak of an Afro-communitarian moral framework. In terms of prevalent commonalities in Afro-communitarian moral frameworks, what is important in the context of our discussion in this chapter is that African morality is a “social morality” [74]. A common thread is that personhood is not automatically bestowed, it is acquired and maintained through relating to, identifying and communing with others as subjects of moral concern and through their reciprocal identification [74–76]. A helpful way of understanding this relational process of identification and counter-identification is through the inherently social notion of solidarity. The moral value of solidarity as a guiding ideal entails ascribing value to the interests of another in a similar way to the value placed upon one’s own interests [77]. It is also generally associated with doing so in the context of a sense of common connection or unity with others, which in this case would be shared personhood. Afro-communitarian conceptions of personhood are also generally construed in a normative sense: “what is right is what connects people together; what separates people is wrong” (Mbiti in [78]). Thus, actions and behaviour that bring about harmony and observe the welfare of others are the most prized, whereas those that are the product of ill-will, causing discord or impairing connections with others are condemned [74, 79]. These insights are also reflected in Menkiti’s premise that “the community [and its values are] prior to the individual” [80]. It is clear from these brief observations that witchcraft, which is regarded as epitomizing ill-will towards others, would be viewed as fundamentally opposing what is most valued by such a social morality. Therefore, it is likely that if strange and inexplicable behaviours (such as those associated with dementia) are interpreted in terms of a witchcraft explanatory model, the persons displaying such behaviours would not only be regarded as external to the moral community, but also as threatening its very existence. The task then is to consider how such a communitarian framework is able to offer resistance to these particular beliefs. In its general use, the concept of personhood operates as an umbrella term which has seemingly universal moral importance in terms of its weight in securing certain rights and entitlements (as well as demanding certain obligations and duties), despite there being a lack of consensus regarding what factors actually constitute personhood. Individualist conceptions of personhood generally ground moral status or human dignity in the capacity for self-determination or moral autonomy, whereas relational conceptions are grounded in the capacity for “being both a subject and object of a communal [or shared] relationship” [81]. Being considered

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a person in either sense is a protective mechanism. Conversely, dehumanization would entail viewing the other as having lost their personhood (or not having possessed it to begin with) and thus their moral claim to be treated in a particular way. While there are numerous permutations of the social morality associated with Afro-communitarianism, if an individual is perceived as displaying socially divisive behaviour believed to be indicative of an ill-will, this may lead to that individual being regarded as a non-person (in the above sense), with significant negative impacts for that individual. This provides substance to Mkhonto and Hanssen’s claim, mentioned at the beginning of this section, in terms of a slightly deeper understanding of what informs the violence perpetrated towards individuals believed to be witches who are viewed as epitomizing moral depravity. Restoring recognition of the moral status of a dehumanized or demonized person or group requires a process of rehumanization by way of a shift from an essentialist inference of difference to a focus on similarities whereby they are “invested with qualities that are familiar and accepted” [82, 83]. In contexts where dementia symptoms are highly stigmatized, resulting in dehumanization of persons with dementia, rehumanization would entail addressing interpretations of observable behavioural symptoms that are feared or regarded as indicative of malevolence in order to bring about a recognition that their personhood, in the sense of being a subject and object of moral concern, remains. We do not propose that this will be an easy task, nor do we give specific suggestions here about how to facilitate this recognition as this may differ according to context. However, efforts to address this task could draw on work that has explored the importance of relationships as a means of maintaining personhood for persons with dementia [84–86]. In particular, Kitwood and Bredin have argued that the formation and development of personhood is an inherently social process [87]. Intersubjectivity, cultivated through interpersonal relationships, is a precondition for the development of subjectivity and selfhood in the infant and young child [87]: the infant is only able to differentiate him- or herself as an “I” through coming to recognize what is not “I”. In the case of persons with dementia, as their sense of subjectivity is challenged, their personhood and sense of self can be maintained by intersubjectivity [87]. Kitwood discusses six “access routes” to gaining a deeper understanding of the subjective world of persons with dementia, thereby cultivating intersubjectivity. These include: reading first-person accounts of dementia in books and studies; active listening in group or interview contexts; paying careful attention to what persons with dementia do and say in their everyday lives; gaining insights from persons who have experienced an illness with dementia symptoms and have recovered (e.g. meningitis and severe depression); using metaphor and poetry to afford a deeper understanding of one’s personal experience of relating to a person with dementia; and role playing [88]. While Kitwood’s work was developed in a Western context, some of his ideas could be adapted and used as part of the community engagement process prior to commencing dementia studies.

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12.4 R  ecommendations for Minimising Stigma-Related Risk in Genomic Studies of Dementia in Sub-Saharan African Contexts Our aim in this chapter has been to provide a deeper understanding of the nature of dementia stigma in SSA contexts. Given the lack of empirical studies in relevant areas, this has largely been a theoretical discussion that has drawn on the few empirical studies that have so far been conducted.5 In this final section we provide some practical suggestions for mitigating dementia stigma in the context of large-­ scale genomic studies.

12.4.1 Ensuring That Consortia or Multi-Site Studies Have Dedicated Ethics Working Groups The consortium approach is increasingly used in genomic research. This is primarily because statistical power for variants with small effects (avoiding false positives and false negatives) is dependent on sample size [90, 91].6 The challenges of recruiting such large samples have led to the meta-analysis approach, which entails pooling genomic summary results from numerous studies, conducted at different sites. Such studies are often conducted in the context of international consortia comprising multi-site collaboration. Globally, the Psychiatric Genomics Consortium (PGC) [93] is the largest of these consortia focused on mental disorders. The PGC also includes an AD working group [16]. In North America, the Alzheimer’s Disease Neuroimaging initiative is another important multi-site study that has been running since 2004 [94]. In SSA, the Human Heredity and Health in Africa Initiative (H3Africa) has included multi-site genomic studies focused on mental disorders [95], while the Neuropsychiatric Genetics of African Populations Consortium (NeuroGAP) is focused specifically on psychotic and neurodevelopmental disorders, with sites in four African countries [96]. Both of these consortia have dedicated ethics working groups that focus specifically on the ethical, legal and social issues elicited by the research process, including undertaking related empirical ethics studies, community engagement and capacity building and training in ethics. Given the challenges regarding stigma discussed above, consortium-led genomic studies of LOAD in 5  It is not only descriptive studies of dementia stigma that are lacking in sub-Saharan African contexts. Of the studies included in a recent narrative review of the effectiveness of anti-stigma interventions in the area of mental health, nearly all of the included studies were conducted in high-income countries. While there were two studies included from lower-middle income countries, no studies from low-income countries qualified for inclusion [89]. 6  For example, a genetic variant with a small effect size (relative risk between 0–2) generally requires a sample size of greater than 8000 cases and an equal number of controls [92].

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African populations should follow a similar approach. Where possible, this should include the provision of funding for such groups to conduct prior studies to investigate local beliefs and attitudes about dementia in the contexts in which studies will be conducted, to assess how biogenetic models of dementia will be interpreted and the impact this could have on essentialization and thus on stigma, and to ascertain the most effective way of communicating this information.

12.4.2 Prior and Ongoing Community Engagement In light of projected increases in dementia prevalence in low-resourced contexts, community support and care will become increasingly necessary for persons with dementia and those involved in their care [97]. In addition to formal studies, community engagement with stakeholders, prior to commencing genomic studies of dementia, will assist in gaining an adequate understanding of local explanatory models of dementia, identifying other important factors relevant to the research and can also serve as a means of providing information about the disease to communities [98]. Moreover, the community engagement process could be a suitable forum for implementing aspects of Kitwood’s approach discussed in the previous section. While the challenges posed by authentic community engagement should not be underestimated, it is increasingly regarded as a prerequisite for ethical, culturally sensitive research [99–102]. In addition to securing the necessary contextual knowledge, community engagement also serves as a means of showing respect for communities, gaining their trust and obtaining their support with study recruitment [103].

12.4.3 Collaboration with Non-Specialized Health Care Providers In terms of help-seeking, the ADI review revealed that both allopathic and traditional or faith healing are sought by persons with dementia and those involved in their care [1, 49]. Evidence suggests that the nature of the explanatory model informs what kind of help is sought, e.g. seeking help from traditional or faith healers occurs primarily in the case of beliefs that dementia symptoms have supernatural causes which therefore require spiritual responses [1]. The value of consulting and collaborating with traditional and faith healers in mental health care is increasingly recognized by mental health practitioners in SSA contexts, including in South Africa [104–108]. Moreover, as ADI have posited, non-biomedical healers “are arguably further ahead of biomedical health services in providing holistic, community-based care which meets the needs of older people” [1]. Indeed, with the growing emphasis on task-shifting in SSA, it may also be important to ally with a range of non-specialist health workers involved in caring for people with dementia [109]. Given the widespread use of traditional and faith healers in SSA, consulting with such persons prior to genomic studies may be an effective means of assessing the level of stigma risk in a particular context and enlisting their help in providing support for persons with dementia.

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12.5 Concluding Remarks While there are other ethical challenges associated with conducting genomic studies of dementia in SSA, we have focused exclusively on stigma. There has been extensive engagement in the “genethics” literature in recent years regarding issues of governance, informed consent, feedback of findings, biobanking, export of samples and equitable research partnerships in the SSA context [102, 110– 115]. Many of these issues are likely to be relevant in the case of genomic studies of dementia. As mentioned above, there has also been considerable engagement with mental disorder stigma in general. However, empirical studies and conceptual discussions of dementia stigma in SSA have been minimal. We have therefore drawn upon related discussions and studies that we take to be important in affording a deeper understanding of dementia stigma in SSA contexts, with a focus on dementia stigma as informed by particular explanatory models of disease. We have also made suggestions for further areas of research as well as recommendations for addressing dementia stigma in the context of large-scale genomic studies.

References 1. Alzheimer’s Disease International. Dementia in sub-Saharan Africa: challenges and opportunities. London: Alzheimer’s Disease International; 2017. 2. Cuyvers E, Sleegers K. Genetic variations underlying Alzheimer’s disease: evidence from genome-wide association studies and beyond. Lancet Neurol. 2016;15(8):857–68. https:// doi.org/10.1016/S1474-­4422(16)00127-­7. 3. Jun GR, Chung J, Mez J, Barber R, Beecham GW, Bennett DA, et al. Transethnic genome-­ wide scan identifies novel Alzheimer’s disease loci. Alzheimers Dement. 2017;13(7):727–38. https://doi.org/10.1016/j.jalz.2016.12.012. 4. Quansah E, McGregor NW. Towards diversity in genomics: the emergence of neurogenomics in Africa? Genomics. 2018;110(1):1–9. https://doi.org/10.1016/j.ygeno.2017.07.009. 5. Brooke J, Ojo O. Contemporary views on dementia as witchcraft in sub-Saharan Africa: a systematic literature review. J Clin Nurs. 2019; https://doi.org/10.1111/jocn.15066. 6. McKeown RE. The epidemiologic transition: changing patterns of mortality and population dynamics. Am J Lifestyle Med. 2009;3(1 Suppl):19S–26S. https://doi. org/10.1177/1559827609335350. 7. Dalal S, Beunza JJ, Volmink J, Adebamowo C, Bajunirwe F, Njelekela M, et al. Non-­ communicable diseases in sub-Saharan Africa: what we know now. Int J Epidemiol. 2011;40(4):885–901. https://doi.org/10.1093/ije/dyr050. 8. United Nations. Sub-Saharan Africa’s growing population of older persons. In: Division UN-P, editor. United Nations; 2016. 9. Nichols E, Szoeke CEI, Vollset SE, Abbasi N, Abd-Allah F, Abdela J, et al. Global, regional, and national burden of Alzheimer’s disease and other dementias, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(1):88–106. https://doi.org/10.1016/s1474-­4422(18)30403-­4. 10. World Health Organization. Global action plan on the public health response to dementia 2017–2025. Retrieved from Geneva; 2017. 11. Bird TD. Genetic aspects of Alzheimer disease. Genet Med. 2008;10(4):231–9. https://doi. org/10.1097/GIM.0b013e31816b64dc.

216

A. C. Palk and D. J. Stein

12. Gatz M, Reynolds C, Fratiglioni L, Johansson B. Role of genes and environments for explaining Alzheimer disease. Arch Gen Psychiatry. 2006;63(2):168–74. https://doi. org/10.1001/archpsyc.63.2.168. 13. Karch CM, Cruchaga C, Goate AM. Alzheimer’s disease genetics: from the bench to the clinic. Neuron. 2014;83(1):11–26. https://doi.org/10.1016/j.neuron.2014.05.041. 14. Cuccaro D, De Marco EV, Cittadella R, Cavallaro S. Copy number variants in Alzheimer’s disease. J Alzheimers Dis. 2017;55(1):37–52. https://doi.org/10.3233/JAD-­160469. 15. Lambert J-C, Ibrahim-Verbaas CA, Harold D, Naj AC, Sims R, Bellenguez C, et al. Meta-­ analysis of 74,046 individuals identifies 11 new susceptibility loci for Alzheimer’s disease. Nat Genet. 2013;45:1452. https://doi.org/10.1038/ng.2802. 16. Jansen IE, Savage JE, Watanabe K, Bryois J, Williams DM, Steinberg S, et al. Genome-wide meta-analysis identifies new loci and functional pathways influencing Alzheimer’s disease risk. Nat Genet. 2019;51(3):404–13. https://doi.org/10.1038/s41588-­018-­0311-­9. 17. Alzheimer’s Disease International. World Alzheimer report 2014: dementia and risk reduction, an analysis of protective and modifiable factors. London: Alzheimer’s Disease International; 2014. 18. Chen ST, Siddarth P, Ercoli LM, Merrill DA, Torres-Gil F, Small GW. Modifiable risk factors for Alzheimer disease and subjective memory impairment across age groups. PLoS One. 2014;9(6):e98630. https://doi.org/10.1371/journal.pone.0098630. 19. Daviglus ML, Bell CC, Berrettini W, Bowen PE, Connolly ES, Cox NJ, et al. National Institutes of Health State-of-the-Science Conference statement: preventing Alzheimer disease and cognitive decline. Ann Intern Med. 2010;153(3):176. https://doi.org/10.7326/ 0003-­4819-­153-­3-­201008030-­00260. 20. Potocnik FCV. Dementia.(GUIDELINE). S Afr J Psychiatry. 2013;19(3):141. 21. Peprah E, Xu H, Tekola-Ayele F, Royal CD. Genome-wide association studies in Africans and African Americans: expanding the framework of the genomics of human traits and disease. Public Health Genomics. 2015;18(1):40–51. https://doi.org/10.1159/000367962. 22. Logue MW, Lancour D, Farrell J, Simkina I, Fallin MD, Lunetta KL, Farrer LA. Targeted sequencing of Alzheimer disease genes in African Americans implicates novel risk variants. Front Neurosci. 2018;12:592. https://doi.org/10.3389/fnins.2018.00592. 23. Martin AR, Gignoux CR, Walters RK, Wojcik GL, Neale BM, Gravel S, et al. Human demographic history impacts genetic risk prediction across diverse populations. Am J Hum Genet. 2017;100(4):635–49. https://doi.org/10.1016/j.ajhg.2017.03.004. 24. Rosenberg NH, Lucy H, Ethan MJ, Zachary AS, Ivana J, Michael B. Genome-wide association studies in diverse populations. Nat Rev Genet. 2010;11(5):356. https://doi.org/10.1038/ nrg2760. 25. Martin AR, Teferra S, Moller M, Hoal EG, Daly MJ. The critical needs and challenges for genetic architecture studies in Africa. Curr Opin Genet Dev. 2018;53:113–20. https://doi. org/10.1016/j.gde.2018.08.005. 26. Palk AC, Dalvie S, de Vries J, Martin AR, Stein DJ. Potential use of clinical polygenic risk scores in psychiatry - ethical implications and communicating high polygenic risk. Philos Ethics Humanit Med. 2019;14(1):4. https://doi.org/10.1186/s13010-­019-­0073-­8. 27. Bissada A. Nigeria’s elderly suffering from dementia, not witchcraft says activist. 2019. Retrieved from http://www.rfi.fr/en/africa/20190310-­nigerias-­elderly-­suffering-­dementia­not-­witchcraft-­says-­activist. 28. Holtzhausen B. The witch, dementia and the Wicking Dementia Centre: an African story. 2019. Retrieved from https://www.utas.edu.au/wicking/newsletters/an-­african-­story. 29. Kelly G. Living with Alzheimer’s: memory loss is not a normal part of ageing. 2018. Retrieved from https://www.dailymaverick.co.za/article/2018-­09-­21-­living-­with-­ alzheimers-­memory-­loss-­is-­not-­a-­normal-­part-­of-­ageing/. 30. Steyn L. Dementia: SA’s hidden disease. 2010. Retrieved from https://mg.co.za/ article/2010-­10-­08-­dementia-­sas-­hidden-­disease. 31. de Jager CA, Joska JA, Hoffman M, Borochowitz KE, Combrinck MI. Dementia in rural South Africa: a pressing need for epidemiological studies. South Afr Med J. 2015;105(3):189. https://doi.org/10.7196/SAMJ.8904.

12  Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa…

217

32. de Jager CA, Msemburi W, Pepper K, Combrinck MI. Dementia prevalence in a rural region of South Africa: a cross-sectional community study. J Alzheimers Dis. 2017;60(3):1087–96. https://doi.org/10.3233/JAD-­170325. 33. Goffman E. Stigma : notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall; 1963. 34. Corrigan PW, Watson AC. Understanding the impact of stigma on people with mental illness. World Psychiatry. 2002;1(1):16. 35. Thornicroft G, Rose D, Kassam A, Sartorius N. Stigma: ignorance, prejudice or discrimination? Br J Psychiatry. 2007;190:192. 36. Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27:363–85. 37. Jorm AF, Oh E. Desire for social distance from people with mental disorders. Aust N Z J Psychiatry. 2009;43(3):183–200. https://doi.org/10.1080/00048670802653349. 38. Cahill S, Pierce M, Werner P, Darley A, Bobersky A. A systematic review of the public’s knowledge and understanding of Alzheimer’s disease and dementia. Alzheimer Dis Assoc Disord. 2015;29(3):255–75. https://doi.org/10.1097/WAD.0000000000000102. 39. Werner P. Stigma and Alzheimer’s disease: a systematic review of evidence, theory, and methods. In: Corrigan PW, editor. The stigma of disease and disability: understanding causes and overcoming injustices. Washington, DC: American Psychological Association; 2014. p. 223–44. 40. Evans SC. Ageism and dementia. In: Ayalon LT-R, editor. Contemporary perspectives on ageism: Springer; 2018. p. 263–75. 41. Nhongo TM. Age discrimination in Africa. Paper presented at the International Federation on Ageing Conference, Copenhagen; 2006. 42. Kotze C. Elder abuse-the current state of research in South Africa. Front Public Health. 2018;6:358. https://doi.org/10.3389/fpubh.2018.00358. 43. Walmsley BD, McCormack L. Stigma, the medical model and dementia care: psychological growth in senior health professionals through moral and professional integrity. Dementia (London). 2016;15(6):1685–702. https://doi.org/10.1177/1471301215574112. 44. Faure A, Guerchet M, Mbelesso P, Mouanga AM, Dalmay F, Dubreuil C-M, et al. Dementia and cognitive impairment: beliefs and attitudes towards elderly in Central Africa (edac survey). Alzheimers Dement. 2010;6(4):S95–6. https://doi.org/10.1016/j. jalz.2010.05.300. 45. Khonje V, Milligan C, Yako Y, Mabelane M, Borochowitz KE, de Jager CA. Knowledge, attitudes and beliefs about dementia in an urban Xhosa-speaking community in South Africa. Adv Alzheimer Dis. 2015;4(2):21–36. https://doi.org/10.4236/aad.2015.42004. 46. Yusuf AJ, Baiyewu O. Beliefs and attitudes towards dementia among community leaders in Northern Nigeria. West Afr J Med. 2012;31(1):8–13. 47. Agyeman N, Guerchet M, Nyame S, Tawiah C, Owusu-Agyei S, Prince MJ, Mayston R. “When someone becomes old then every part of the body too becomes old”: experiences of living with dementia in Kintampo, rural Ghana. Transcult Psychiatry. 2019;56(5):895–917. https://doi.org/10.1177/1363461519847054. 48. Faure-Delage A, Mouanga AM, M’belesso P, Tabo A, Bandzouzi B, Dubreuil C-M, et al. Socio-cultural perceptions and representations of dementia in Brazzaville, republic of Congo: the EDAC survey. Dement Geriatr Cogn Dis Extra. 2012;2(1):84–96. https://doi. org/10.1159/000335626. 49. Hindley G, Kissima J, Oates LL, Paddick S-M, Kisoli A, Brandsma C, et al. The role of traditional and faith healers in the treatment of dementia in Tanzania and the potential for collaboration with allopathic healthcare services. Age Ageing. 2017;46(1):130. https://doi. org/10.1093/ageing/afw167. 50. Mkhonto F, Hanssen I. When people with dementia are perceived as witches. Consequences for patients and nurse education in South Africa. J Clin Nurs. 2018;27(1–2):e169–76. https:// doi.org/10.1111/jocn.13909. 51. Mushi D, Rongai A, Paddick S-M, Dotchin C, Mtuya C, Walker R. Social representation and practices related to dementia in Hai District of Tanzania. BMC Public Health. 2014;14(1):260. https://doi.org/10.1186/1471-­2458-­14-­260.

218

A. C. Palk and D. J. Stein

52. Adebiyi AO, Fagbola MA, Olakehinde O, Ogunniyi A. Enacted and implied stigma for dementia in a community in south-West Nigeria. Psychogeriatrics. 2016;16(4):268–73. https://doi.org/10.1111/psyg.12156. 53. Tortora B. Witchcraft believers in sub-Saharan Africa rate lives worse: belief widespread in many countries. 2010. Retrieved from https://news.gallup.com/poll/142640/witchcraft-­ believers-­sub-­saharan-­africa-­rate-­lives-­worse.aspx. 54. Ally Y. “Burn the witch”: the impact of the fear of witchcraft on social cohesion in South Africa. Psychol Soc. 2015;(49):25–45. https://doi.org/10.17159/2309-­8708/2015/n49a3. 55. Makoye K. Five women beaten and burned part of rising wave of Tanzanian ‘witch killings’. 2017. Retrieved from https://www.reuters.com/article/us-­tanzania-­women/five-­women-­ beaten-­and-­burned-­part-­of-­rising-­wave-­of-­tanzanian-­witch-­killings-­idUSKBN1AG21U. 56. Palmer K. Spellbound: inside West Africa’s witch camps, 1st Free Press hardcover ed. New York: Free Press; 2010. 57. South African Pagan Rights Alliance. Advocacy against witch-hunts. 2018. Retrieved from https://www.paganrightsalliance.org/advocacy/. 58. South African Pagan Rights Alliance. Remember their names – Victims of witch-hunts in South Africa 2000 to 2019. 2019. Retrieved from https://www.paganrightsalliance.org/ remember-­their-­names/. 59. Nwakasi CC, Hayes C, Fulton J, Roberts AR. A pilot qualitative study of dementia perceptions of Nigerian migrant caregivers. Int J Afr Nurs Sci. 2019;10:167–74. https://doi. org/10.1016/j.ijans.2019.03.003. 60. Lebowitz MS, Appelbaum PS. Biomedical explanations of psychopathology and their implications for attitudes and beliefs about mental disorders. Annu Rev Clin Psychol. 2019;15:555–77. https://doi.org/10.1146/annurev-­clinpsy-­050718-­095416. 61. de Vries J, Jallow M, Williams TN, Kwiatkowski D, Parker M, Fitzpatrick R. Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely? Soc Sci Med. 2012;75(8):1400–7. https://doi.org/10.1016/j. socscimed.2012.05.020. 62. Angermeyer MC, Holzinger A, Carta MG, Schomerus G. Biogenetic explanations and public acceptance of mental illness: systematic review of population studies. Br J Psychiatry. 2011;199(5):367–72. https://doi.org/10.1192/bjp.bp.110.085563. 63. Loughman A, Haslam N. Neuroscientific explanations and the stigma of mental disorder: a meta-analytic study. Cogn Res Princ Implic. 2018;3(1):43. https://doi.org/10.1186/ s41235-­018-­0136-­1. 64. Schomerus G, Schwahn C, Holzinger A, Corrigan PW, Grabe HJ, Carta MG, Angermeyer MC. Evolution of public attitudes about mental illness: a systematic review and meta-analysis. Acta Psychiatr Scand. 2012;125(6):440–52. https://doi.org/10.1111/j.1600-­0447.2012. 01826.x. 65. Schomerus G, Matschinger H, Angermeyer MC. Causal beliefs of the public and social acceptance of persons with mental illness: a comparative analysis of schizophrenia, depression and alcohol dependence. Psychol Med. 2014;44(2):303–14. https://doi.org/10.1017/ S003329171300072X. 66. Haslam N, Kvaale EP. Biogenetic explanations of mental disorder: the mixed-blessings model. Curr Dir Psychol Sci. 2015;24(5):399–404. https://doi.org/10.1177/0963721415588082. 67. Downs M. The emergence of the person in dementia research. Ageing Soc. 1997;17(5):597–607. https://doi.org/10.1017/S0144686X9700665X. 68. Van Gorp B, Vercruysse T. Frames and counter-frames giving meaning to dementia: a framing analysis of media content. Soc Sci Med. 2012;74(8):1274–81. https://doi.org/10.1016/j. socscimed.2011.12.045. 69. Haslam N. Dehumanization: an integrative review. Personal Soc Psychol Rev. 2006;10(3):252–64. https://doi.org/10.1207/s15327957pspr1003_4. 70. Haslam N, Loughnan S, Kashima Y, Bain P. Attributing and denying humanness to others. Eur Rev Soc Psychol. 2008;19(1):55–85. https://doi.org/10.1080/10463280801981645.

12  Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa…

219

71. Deist M, Greeff AP. Living with a parent with dementia: a family resilience study. Dementia. 2017;16(1):126–41. https://doi.org/10.1177/1471301215621853. 72. Bar-Tal D. Shared beliefs in a society: social psychological analysis. Thousand Oaks, CA: Sage; 2000. 73. Bandura A. Selective moral disengagement in the exercise of moral agency. J Moral Educ. 2002;31(2):101–19. https://doi.org/10.1080/0305724022014322. 74. Gyekye K. African ethics. The Stanford Encyclopedia of Philosophy. 2011. Retrieved from https://plato.stanford.edu/entries/african-­ethics/. 75. Mbiti JS. African religions and philosophy, 2nd rev. and enl. ed. Oxford: Heinemann; 1990. 76. Menkiti IA. Person and community in African traditional thought. In: Wright RA, editor. African philosophy : an introduction. 2nd ed. Washington, DC: University Press of America; 1979. 77. Hussain W. The common good. The Stanford Encyclopedia of Philosophy. 2018. Retrieved from https://plato.stanford.edu/archives/spr2018/entries/common-­good/. 78. Verhoef H, Michel C. Studying morality within the african context: a model of moral analysis and construction. J Moral Educ. 1997;26(4):389–407. https://doi. org/10.1080/0305724970260401. 79. Metz T. Toward an African moral theory. J Polit Philos. 2007;15(3):321–41. https://doi. org/10.1111/j.1467-­9760.2007.00280.x. 80. Eze MO. Menkiti, Gyekye and beyond: towards a decolonization of African political philosophy. Filos Theor J Afr Philos, Cult Relig. 2018;7(2):1. https://doi.org/10.4314/ft.v7i2.1. 81. Metz T. An African theory of social justice: relationship as the ground of rights, resources and recognition. In: Biosen G, Murray M, editors. Distributive justice debates in political and social thought. New York: Routledge; 2016. p. 171–90. 82. Halpern J, Weinstein HM. Rehumanizing the other: empathy and reconciliation. Hum Rights Q. 2004;26(3):561–83. https://doi.org/10.1353/hrq.2004.0036. 83. Oelofsen R. De- and rehumanization in the wake of atrocities. S Afr J Philos. 2009;28(2):178–88. https://doi.org/10.4314/sajpem.v28i2.46677. 84. Baylis F. Still gloria: personal identity and dementia. IJFAB: Int J Femin Approach Bioeth. 2017;10(1):210–24. 85. Ericsson I, Kjellstrom S, Hellstrom I. Creating relationships with persons with moderate to severe dementia. Dementia (London). 2013;12(1):63–79. https://doi. org/10.1177/1471301211418161. 86. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press; 1997. 87. Kitwood T, Bredin K. Towards a theory of dementia care: personhood and Well-being. Ageing Soc. 1992;12(03):269–87. https://doi.org/10.1017/S0144686X0000502X. 88. Kitwood T. The experience of dementia. Aging Ment Health. 1997;1(1):13–22. https://doi. org/10.1080/13607869757344. 89. Thornicroft G, Mehta N, Clement S, Evans-Lacko S, Doherty M, Rose D, et al. Evidence for effective interventions to reduce mental-health-related stigma and discrimination. Lancet. 2016;387(10023):1123–32. https://doi.org/10.1016/S0140-­6736(15)00298-­6. 90. Hong EP, Park JW. Sample size and statistical power calculation in genetic association studies. Genomics Inform. 2012;10(2):117–22. https://doi.org/10.5808/GI.2012.10.2.117. 91. Visscher PM, Wray NR, Zhang Q, Sklar P, McCarthy MI, Brown MA, Yang J. 10 years of GWAS discovery: biology, function, and translation. Am J Hum Genet. 2017;101(1):5–22. https://doi.org/10.1016/j.ajhg.2017.06.005. 92. Psychiatric GWAS Consortium Coordinating Committee. Genomewide association studies: history, rationale, and prospects for psychiatric disorders. Am J Psychiatry. 2009;166(5):540–56. 93. Psychiatric Genomics Consortium (PGC). What is the PGC? 2018. Retrieved from http:// www.med.unc.edu/pgc.

220

A. C. Palk and D. J. Stein

94. Mueller SG, Weiner MW, Thal LJ, Petersen RC, Jack CR, Jagust W, et al. Ways toward an early diagnosis in Alzheimer’s disease: the Alzheimer’s Disease Neuroimaging Initiative (ADNI). Alzheimers Dement. 2005;1(1):55–66. https://doi.org/10.1016/j.jalz.2005.06.003. 95. Mulder N, Abimiku A, Adebamowo SN, de Vries J, Matimba A, Olowoyo P, et al. H3Africa: current perspectives. Pharmgenomics Pers Med. 2018;11:59–66. https://doi.org/10.2147/ PGPM.S141546. 96. Stevenson A, Akena D, Stroud RE, Atwoli L, Campbell MM, Chibnik LB, et al. Neuropsychiatric Genetics of African Populations-Psychosis (NeuroGAP-Psychosis): a case-­ control study protocol and GWAS in Ethiopia, Kenya, South Africa and Uganda. BMJ Open. 2019;9(2):e025469. https://doi.org/10.1136/bmjopen-­2018-­025469. 97. Borochowitz K. Dementia the stigma and the challenges: conference paper. ESR Rev Econ Soc Rights South Africa. 2011;12(1):32–3. 98. Campbell MM, Susser E, de Vries J, Baldinger A, Sibeko G, Mndini MM, et al. Exploring researchers’ experiences of working with a researcher-driven, population-specific community advisory board in a South African schizophrenia genomics study. BMC Med Ethics. 2015;16(1):45. https://doi.org/10.1186/s12910-­015-­0037-­5. 99. Molyneux S, Bull SJ, Organizing Committee for the Community Engagement and Consent Workshop. Consent and community engagement in diverse research contexts. Reviewing and developing research and practice. J Empir Res Hum Res Ethics. 2013;8(4):1–18. https://doi. org/10.1525/jer.2013.8.4.1. 100. Reynolds L, Sariola S. The ethics and politics of community engagement in global health research. Crit Public Health. 2018;28(3):257–68. https://doi.org/10.1080/09581596.201 8.1449598. 101. Ruiz-Casares M. Research ethics in global mental health: advancing culturally responsive mental health research. Transcult Psychiatry. 2014;51(6):790–805. https://doi. org/10.1177/1363461514527491. 102. Tindana P, de Vries J, Campbell M, Littler K, Seeley J, Marshall P, et al. Community engagement strategies for genomic studies in Africa: a review of the literature. BMC Med Ethics. 2015;16:24. 103. Adebamowo SN, Francis V, Tambo E, Diallo SH, Landoure G, Nembaware V, et al. Implementation of genomics research in Africa: challenges and recommendations. Glob Health Action. 2018;11(1):1419033. https://doi.org/10.1080/16549716.2017.1419033. 104. Akol A, Moland KM, Babirye JN, Engebretsen IMS. “We are like co-wives”: traditional healers’ views on collaborating with the formal Child and Adolescent Mental Health System in Uganda. BMC Health Serv Res. 2018;18(1):258. https://doi.org/10.1186/s12913-­018-­3063-­4. 105. Campbell-Hall V, Petersen I, Bhana A, Mjadu S, Hosegood V, Flisher AJ, HaPP Research Programme Consortium. Collaboration between traditional practitioners and primary health care staff in South Africa: developing a workable partnership for community mental health services. Transcult Psychiatry. 2010;47(4):610–28. https://doi.org/10.1177/1363461510383459. 106. Sorsdahl K, Stein DJ, Grimsrud A, Seedat S, Flisher AJ, Williams DR, Myer L. Traditional healers in the treatment of common mental disorders in South Africa. J Nerv Ment Dis. 2009;197(6):434–41. https://doi.org/10.1097/NMD.0b013e3181a61dbc. 107. van Rooyen D, Pretorius B, Tembani NM, ten Ham W. Allopathic and traditional health practitioners’ collaboration. Curationis. 2015;38(2):1495. https://doi.org/10.4102/curationis. v38i2.1495. 108. Zabow T. Traditional healers and mental health in South Africa. Int Psychiatry. 2007;4(4):81–3. https://doi.org/10.1192/S174936760000521X. 109. Prince MJ, Acosta D, Castro-Costa E, Jackson J, Shaji KS. Packages of care for dementia in low- and middle-income countries. PLoS Med. 2009;6(11):e1000176. https://doi. org/10.1371/journal.pmed.1000176. 110. de Vries J, Bull SJ, Doumbo O, Ibrahim M, Mercereau-Puijalon O, Kwiatkowski D, Parker M. Ethical issues in human genomics research in developing countries. BMC Med Ethics. 2011;12:5. https://doi.org/10.1186/1472-­6939-­12-­5.

12  Ethical Implications of Genomic Research on Dementia in Sub-Saharan Africa…

221

111. de Vries J, Munung SN, Matimba A, McCurdy S, Ouwe Missi Oukem-Boyer O, Staunton C, et al. Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries. BMC Med Ethics. 2017;18(1):8. https://doi.org/10.1186/s12910-­016-­0165-­6. 112. Parker M, Bull SJ, de Vries J, Agbenyega T, Doumbo OK, Kwiatkowski DP. Ethical data release in genome-wide association studies in developing countries. PLoS Med. 2009;6(11):e1000143. https://doi.org/10.1371/journal.pmed.1000143. 113. Parker M, Kwiatkowski DP. The ethics of sustainable genomic research in Africa. Genome Biol. 2016;17(1):44. https://doi.org/10.1186/s13059-­016-­0914-­3. 114. Tindana P, Molyneux S, Bull S, Parker M. ‘It is an entrustment’: broad consent for genomic research and biobanks in sub-Saharan Africa. Dev World Bioeth. 2019;19(1):9–17. https:// doi.org/10.1111/dewb.12178. 115. Yakubu A, Tindana P, Matimba A, Littler K, Munung NS, Madden E, et al. Model framework for governance of genomic research and biobanking in Africa—a content description. AAS Open Res. 2018;1:13. https://doi.org/10.12688/aasopenres.12844.2.

Patient Advocacy in Dementia: The Culture and Ethics of Policy-Making and Representation

13

Silke Schicktanz and Aviad Raz

Contents 13.1  13.2  13.3  13.4 

Introduction  224 Different Typologies of Patient Advocacy Organizations  224 The Value of Patient Advocacy Organizations on ADRD’s Care and Research Policy 226 Advocacy Organizations of and for People with ADRD: A Quest for Representation and Governance  229 13.4.1  Comparing the Aims and Constitutions of ADRD POs in Germany and Israel  230 13.5  Conclusion  232 References  234

Abstract

This chapter explores the role and social practices of patient organizations in the context of Alzheimer’s disease and related dementias (ADRD). After discussing typologies of patient advocacy organizations, we focus on how ADRD patient organizations show a strong biopolitical impact on health policy governance and national research policies. Moreover, we discuss the key normative concepts of patient representation and inclusion in patient organizations and how these norms vary cross-culturally in their interpretation and application in advocacy.

S. Schicktanz (*) University Medical Center Göttingen, Göttingen, Germany e-mail: [email protected] A. Raz Ben-Gurion University of the Negev, Be’er Sheva, Israel e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_13

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13.1 Introduction Various organizations, associations and support groups have in the last decades emerged around patients and their families, mobilizing their ‘lay expertise’ for information exchange, improved health services and access, advocacy, networking, research and more. This chapter explores and compares various patient organizations in the context of Alzheimer’s disease and related dementias (ADRD). We will first discuss what types of patient advocacy exist and how they differ from one another. For practical reasons, we use the category ‘patient advocacy organizations’ as an umbrella concept generally encompassing the various kinds of organizations that were established to promote patient autonomy, including advocacy groups, umbrella associations, and support groups. Later we differentiate between the various categories for analytical reasons. Secondly, we will show how ADRD patient organizations go well beyond the commonly understood concept of ‘local support groups’. They have a strong biopolitical impact on health policy governance. Thirdly, we will illustrate how ADRD patient organizations can vary culturally and politically, depending on normative, legal and sociopolitical contexts. For this latter point, we will refer to our previous studies, conducted in Germany, Israel, and the US.1

13.2 Different Typologies of Patient Advocacy Organizations Health advocacy groups encompass a broad spectrum of persons being affected (see below our discussion of the term ‘being affected’). The term ‘advocacy group’ is often used as a generic term for patient organizations and associations that mainly include family members or semi-professionals that speak on behalf of patients. As ‘advocacy’ groups, they can be distinguished by their political engagement from nonpolitical, mainly local, short-term self-help groups. A critical perspective on the background context of the majority of advocacy groups is, however, needed. On the other hand, the term ‘patient advocacy organization’ comes closer to the moral principle that patients’ interests and needs should be advocated for by patients themselves (at least in part). However, as Chandler [4] has convincingly shown, the controversy of advocacy for persons with mental illness lies in the fact that ‘advocates’ can claim to speak on behalf of patients, but do sometimes advocate their own interests instead. In the following, for practical reasons we adopt the term ‘patient advocacy organization’ (PO). Before starting to discuss ADRD patient advocacy, we need to point out that there exist different typologies of collective organizations that claim to speak on behalf of patients. The field of studying patient advocacy organizations (or comparable non-­ governmental associations) has developed very rapidly in recent years [5–7]. The 1  This chapter draws on the following previously conducted research: Raz et al. [1]; Schicktanz [2], Schicktanz et al. [3].

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different types of groups—ranging from small, local self-help groups to large, national organizations and even transnational associations—share the claim to embody, empower and advocate the collective interests of patients [8]. A major question in this field is how to define and categorize these various types of organization. The literature presents different, but interrelated analytical dimensions. One aspect of differentiation is how they are organized: from large and bureaucratic to small and informal. Many of them are associations that are built and led by a strict internal democratic structure including protocols for membership, election, rotation and representation. Others are foundations which do not have patients as members, but rather family members, scientific experts, or healthcare professionals. In recent years, smaller organizations have allied to form varied and numerous coalitions, such as the Genetic Alliance, a non-governmental US organization advocating for more than 600 smaller groups, and EURORDIS, a European alliance of PO for rare diseases. Secondly, membership can vary between organizations of patients (e.g., The Association of People with Visual Disabilities or with Hearing Disabilities) or organizations for patients (e.g., The Organization for Children with Down Syndrome). Other POs, however, such as the Association for Huntington’s disease, may have mixed memberships including both patients and their relatives. Our studies on POs of or for people with autism revealed important differences in the aims and disease conception across these different types of POs [9]. A third typology concerns the goals of POs. Brown et al. suggest a threefold categorization: (a) support organizations that improve access to, or provision of, health care services; (b) constituency-based health movements that address health inequality and inequity based on citizenship, race, ethnicity, gender, age, class and/or sexuality; and (c) embodied health movements addressing disease, disability or illness experience that often challenge science and medical practice concerning etiology, diagnosis, treatment and prevention, for example in the contexts of mental illness or autism [6, 10]. A fourth, related typology is the organization’s relationship with the medico-­ political establishment [11]. This relationship is also influenced by the level of acceptance of the organization concerning biomedical concepts and explanations. Some patient organizations are major players in the adoption of biomedical explanations for a disease or disability (in the context of Alzheimer’s see [12–14]), or the use of biomedical practices (e.g. in the case of stem-cell research) [15]; while others promote alternative and even anti-establishment ideologies, such as the anti-­psychiatry movement [16] or alternative treatments, like the women’s health movement in the 1970s [17]. Three models have emerged in this typology: (a) The auxiliary model denotes organizations and associations that delegate professional authority and decision-making to biomedical specialists; (b) in the emancipatory model, biomedical explanations, practices and policies may be challenged or rejected by PO and associations; and (c) the partnership model considers patients as partners to biomedical professionals, and the ‘partner organization’ serves as mediator between expert knowledge and lay experience and (d) opposing organizations, which level criticism at the medical system, its definitions or methods with a ‘repudiate attitude’ [6, 18].

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Concrete cases may of course blur the boundaries between these categorizations and typologies. For instance, the US Alzheimer’s Association actively prompting its patient members to take part in Alzheimer’s disease2 research could reflect an auxiliary as well as a partnership position. Also many Alzheimer’s POs understand themselves as support organizations by providing detailed information on how to get access to health care, or even as constituency-based health movements, e.g. when lobbying on the political level for better access to health care or public coverage of health care costs.

13.3 T  he Value of Patient Advocacy Organizations on ADRD’s Care and Research Policy Our studies have revealed that national Alzheimer Associations are nowadays very well integrated when it comes to the policy-making of care or research related to ageing and dementia. Alzheimer advocacy groups are normally to be involved in the development of a national dementia plan if a country has the ambition to do so [8]. However, the way that dementia research is shaped by patient organizations can differ quite extremely. Advocacy groups not only support particular kinds of research allocation or challenge assumptions about an illness or its etiology, but also play an important role in bioethical and biopolitical discourse. This biopolitical engagement is very likely embedded in broader political, legal and cultural frameworks, as an example will highlight. In a comparison between the US Alzheimer Association and the German Alzheimer Association, we identified differences regarding the epistemic and ethical dimensions of research [2]: First, the two organizations differ in their priorities concerning what kind of research is needed to ‘solve’ the serious challenges ADRD causes for patients, their families and communities. Secondly, based on differing risk–benefit analyses and estimations of agency and self-­determination, they hold divergent views on whether involving severe cognitively impaired people such as late-stage Alzheimer’s patients in clinical, pharmaceutical, psychological or even sociological research is ethically acceptable. The first point can be illustrated by looking at how the leading US Alzheimer’s advocacy group, Alzheimer’s Association, launched a campaign in 2011. It was entitled: ‘A world free of Alzheimer’s’.3 It is globally the largest association for Alzheimer’s disease and related dementias and supports academic research, particularly in the field of biomedicine and neurosciences, with grants up to ten million USD per year. Its website features a ‘clinical trial match’ database to encourage its members and visitors—mostly family members and sometimes patients themselves—to be highly engaged with biomedicine. The systematic involvement of patient representatives in the current National Institute for Aging’s (NIA) initiatives and their continuous exchange with researchers in closed workshops show the impact of patient advocacy on policy-making in the US, especially in this area.  http://www.alz.org/stl/in_my_community_14848.asp.  See http://www.alz.org/ [Accessed 14 June 2013].

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However, there is a risk that such organizations instrumentalize people with dementia by overstressing self-determination or by casting volunteering (in research) as a social duty. In contrast, the leading German Alzheimer’s advocacy group ‘Deutsche Alzheimer Gesellschaft e.V.’4 provides grants mainly for integrative care or psycho-­ social research. Its website provides position papers and statements5 problematizing the involvement of Alzheimer’s patients in research and clinical trials—especially if the research participants will not (or will not likely) benefit from the research, though other patient populations might. This became very clear when a revision of the European pharmaceutical research law was adopted in Germany [19, 20]. The German Alzheimer’s Association was among those who vehemently criticized the idea of involving people with dementia in research for the benefit of others, even for the benefit of the ‘same group’ of patients. While in the US, research that may benefit people other than the participants who are cognitively impaired is considered acceptable, assuming proxy consent [21], German expert discourse in ethics and German laws are less permissive. Concerns about misuse and biased risk-­benefit-­assessment have led to Germany’s opposition to the Oviedo Convention of Human Rights and Bioethics by the Council of Europe (1997) [22], as the convention allows third-party-interests research with cognitively impaired patients. As this case shows, advocacy groups are not automatically ‘research friendly’. This comparative example illustrates the possible variations of positions toward ethical, scientific and political issues that can be held by ‘similar’ advocacy groups. The differences in grant policy, priority setting for research topics, and bioethical positions between two advocacy organizations in the field of ADRD is remarkable. It also points to the very need to gain a rather nuanced, contextualized understanding of what ADRD advocacy groups do and aim for. This diversity thus offers a strong motive to reflect upon the role and impact patient organizations and health advocacy groups can and should have in the public sphere. From a sociological or political perspective, there are immense cultural differences regarding how advocacy groups engage with the public, scientific and political spheres [1, 7]. Skeptical voices might raise concern about including advocacy perspectives at all – if they differ so much. Therefore, the inclusion—as well as the exclusion—of such perspectives needs a normative justification. The classic sociological lay person versus expert distinction makes no particular division between lay people, citizens and people affected directly, indirectly or potentially. In contrast, lay experts, as Steven Epstein (1996) called HIV activists in his seminal study on HIV activists and their impact on future HIV research, constitute a relatively new class of public actors, namely patients who engage actively in knowledge construction and even help reform clinical research and health care [23]. 4  German Association for Alzheimer’s, own translation, see http://www.deutsche-alzheimer.de/ [Accessed 14 June 2013] only available in German. 5  See http://www.deutsche-alzheimer.de/unser-service/archiv-alzheimer-info/ethik-und-alzheimer. html [accessed 14 June 2013].

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However, the rise of new concepts such as ‘lay expert’ or ‘citizen scientist’ point to the necessity of differentiating the spectrum of knowledge and experience members of the general public can have. The discussion of lay expertise illuminates the existing power relations that pair authority with expertise. When only used in an affirmative way, the term ‘lay expert’ risks underestimating the still existing power asymmetry between lays and professionals. This power asymmetry is exercised by structural resources, language skills, and in some cases, access to knowledge resources or to political decision-making “boards”. Moreover, a simplistic leveling of professional and lay expertise can also lead to a reductive understanding of interests and opinions of these concerned lay persons, neglecting the important moral dimensions linked to patients’ perspectives. As the case of HIV activists clearly shows, these moral dimensions include an interest in protection against discrimination and social exclusion, and the right to be medically treated and socially respected. A theoretical category that better encompasses the epistemic as well as the normative dimension of the lay person’s importance is the term ‘affected person’. While the term ‘lay person’ targets the epistemic aspect of not possessing specialized scientific training, the complex term ‘being affected’ implies the claim to an epistemically and normatively exclusive position, based on the two factors of having first-hand experience and bearing the phenomenological consequences (see also Schicktanz et al. 2008 for details: [24]). On the one hand, ‘being affected’ establishes a causal relationship between an event and its (negative) impact on a person or a group of people. This is even relevant if the people involved are not aware of this relationship themselves. For example, citizens can be affected by climate change, even if they are ignorant or unaware of its onset. Secondly, ‘being affected’ denotes an emotional reaction to an event. This will usually include emotions such as compassion, care and empathy, but also frustration and anxiety. Thus someone can be affected by the pain or discrimination which ill or disabled persons may have to experience, without ever having undergone these him or herself. This kind of being affected becomes explicitly normatively relevant when we argue for solidarity and social responsibility. Although experts can be classified in particular cases as ‘affected persons’, it is important to note that their status is mainly epistemically, but not normatively justified. Expertise does not mean that decisions to be made will affect their personal life, body, or mind. Even if the two meanings of being affected are structurally different, they are nevertheless connected in some cases. Feelings empathetically toward patients’ suffering will be often stronger and more enduring if the affected person is also medically diagnosed. Thus, in the sphere of social movements, ‘being affected’ can be seen as one major factor in moving social awareness and politics toward building social solidarity with and social empowerment for affected persons. Overall, epistemically speaking, being affected refers to possessing experiences, personal insights, and first-hand knowledge of circumstances, as well as bearing the material or psychological consequences of a decision. Lay persons, affected persons and professionals constitute social groups that may categorize one another using stereotypes. These social categories and their attendant

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attributes are constantly being rehearsed in public discourses. Thus, professional experts often describe lay persons as ignorant, uninformed and overly emotional (see for example, Rippe 2000: [25]); affected persons such as the representatives of patient’s associations are usually considered to be informed, but are also often seen as partial, susceptible and even corruptible (e.g., by the pharmaceutical industry) (cp. Paul 2008: [11]); while, in public as well as academic discourses, experts are often described as intelligent, rational, logical, analytical, etc. These stereotypical attributes are crucial to the way certain statements regarding needs, risks, or social values gain public awareness or even acceptance. These different practices of attributing or denying credibility or awareness to the statements of particular speakers can be helpfully analyzed using normative considerations of epistemic injustice, especially in the field of life science policy and bioethics [26, 27]. This concept, introduced by philosopher Miranda Fricker [28], helps to identify unfair practices within public discourse. Epistemic injustice takes place when professional experts (but also other discourse participants such as lay persons and politicians) discredit statements by lay or affected persons as less credible because they were voiced by lay or affected persons. A first step to counter epistemic injustice consists therefore in uncovering these stereotypes and raising consciousness about them.6 Epistemic injustice is strongly demonstrated in the case of people with ADRD being excluded from actively belonging to advocacy groups ostensibly representing them. More generally, it occurs when ADRD advocacy organizations led by indirectly affected persons (such as family members) assume that direct affected persons, because of cognitive impairment or emotional affectedness, cannot contribute in a meaningful way and, as a result, these organizations do not gather experiential knowledge from persons with ADRD to influence healthcare policies and research [29]. While self-representation is often an expressed ideal in practice we observe family members and family caregivers being the active members [3]. They represent the source of experiential knowledge of the illness, and they are the ones who try to influence healthcare policies and research on behalf of patients, as we explicate in the following section.

13.4 A  dvocacy Organizations of and for People with ADRD: A Quest for Representation and Governance Here we stress that Alzheimer’s disease and related dementias are important areas for discussing issues of representation and advocacy [4, 14]. While traditional advocacy for ADRD is dominated by relatives who are caregivers, other associations for ADRD publicly identify themselves as caregiver- and patient-focused organizations, reflecting a process of hybridization [30]. Further, the current debate around ADRD is characterized by two important upheavals: first, various voices 6  Whether it is possible, practically and theoretically, to eliminate all social categories of identity as a consequence can be doubted. However, this reservation does not contradict to some extent the attempts to overcome existing limitations.

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have criticized the medicalization, stigmatization and social exclusion related to ADRD and dementia [31–33]; second, biomedical research on the early stages of dementia is altering the main assumption about the etiology and trajectory of ADRD.  ADRD is now understood as a long-lasting and slowly progressing syndrome with a long pre-­clinical phase. It is assumed that it starts with an asymptomatic stage and develops into a symptomatic stage involving ‘Subjective’ or ‘Mild Cognitive Impairment’ (SCI/MCI). Eventually it converts into a clinical syndromal disease with an already advanced pathology [34]. Both upheavals are impacting the landscape of self-­advocacy. In the past, ADRD advocacy has been dominated by caregivers of people with dementia (POs for), because people with dementia have been deemed incapable of self-advocacy and self-care. Now, ‘patients’ in the early and even pre-clinical stages of the disease are increasingly involved in health activism (POs of) [12].

13.4.1 Comparing the Aims and Constitutions of ADRD POs in Germany and Israel Germany and Israel embrace disability politics and activism that are based on the expansion of welfare and special needs provisions [35–38]. Our comparative empirical analysis, based on semi-structured interviews with PO representatives and members in both countries (see for details: Schicktanz et al. 2018: [3]), revealed the following three common aims of ADRD advocacy in both countries: (a) Fighting social stigma, (b) Endorsing the biomedical model of disease, and (c) Balancing the loss of individual autonomy and the well-being of family caregivers. Fighting Social Stigma  Overall, our interviewees in both countries stressed that, according to their perception, dementia is a ‘special’ illness, highly associated with social stigmatization, because of the progressive and irreversible influence on cognition that affects the personality of the person with dementia. Interviewees highlighted the differences between ADRD and other (now) less stigmatized illnesses such as cancer. Fighting stigma was perceived as a main goal for all the POs we studied. The problem of social stigma led some office-holders to mention their struggle to recruit new members, because being associated with the PO may exacerbate a person’s stigmatization. Biomedical Model of the Disease  Both POs, of and for, supported the biomedical model of dementia. Many POs provide a platform for recruiting potential research participants. The hope is that with better treatment and care, stigma and social exclusion will also diminish. Therefore, the involvement in and collaboration with scientific researchers, including biomedical researchers, was seen as positive, even though the POs’ own direct financial investment in biomedical research was limited. In the case of the German Alzheimer’s Association, their funding of research was related to improving care, housing and PR. In Israel, the ADRD PO did not directly support or fund any kind of research but provided links to existing research for par-

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ticipation opportunities. However, many interviewees criticized national policy for focusing too much on medical and hospital treatment, for setting overly restrictive criteria for receiving social security support, and for overlooking the need for specialized social support for caregivers, as well as for persons with dementia outside the hospital context. Autonomy and the Family Caregiver  Another theme mentioned by all interviewed PO members was the effect of the diagnosis of dementia on the autonomy of the diagnosed person. First, a diagnosis may lead to a problematic heteronomy, in the sense that one becomes governed by family members or others even in very early stages. Secondly, since ADRD is understood as a progressive neurodegenerative disease that will result in loss of memory, planning, orientation, and assessment, it makes the interpretation of the person with ADRD more challenging. POs try to compensate for this loss of individual autonomy in several ways: According to their understanding, the collective voice replaces the individual voice in expressing needs and interests in care and treatments. Additionally, the POs engage in political debates in each country concerning advanced care directives and guardianship. This political engagement takes place in different forums, such as parliamentary or ministry hearings, informing political party members, or via position papers published in the media. This engagement can also be interpreted as an ‘extension’ of the autonomous individual voice (especially as a countermeasure to professional paternalism) to ensure (more) self-determination of the person with dementia. However, there remains an ambiguity in this position, as the POs strongly favor, in an official capacity, the family caregiver as the most competent proxy for decision-making, but rarely problematize this. It was expressed as a typicality of the condition that both patients and their families (as caregivers) are phenomenologically ‘affected by’ ADRD.  In contrast to other chronic diseases such as cancer or HIV, where family members are rarely mentioned as an affected group, in the case of dementia this was different. Family members who act as caregivers are seen as affected almost to the same degree as the diagnosed person. Some German interviewees as a result stressed the need to organize separate activities for caregivers and for people with dementia. Understanding Dementia in POs of and for patients  Alongside these overlaps, we identified important nuances in themes and opinions between POs for patients— that exist both in Israel and Germany - versus the POs of patients, that only exist (at this time) in Germany. These differences can be classified along the three themes of (1) public awareness of dementia, (2) representative political practice, and (3) intra-­ family relationships. Regarding public awareness of dementia, POs for and POs of differed in the detailed characterization of how dementia should be framed. Both German and Israeli POs stressed a rather ‘holistic’ approach toward medical and social support for all affected persons, including patients and their relatives as caregivers. They

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also rallied to fight the tabooing of the disease as such and to provide comprehensive information for lay persons about the progressive course of the disease. The POs of aimed at—literally, via inclusive membership—engaging with broader society to raise awareness, showing their members’ autonomy and agency despite living with dementia by creating opportunities for interaction between the general public and people with early stage dementia. Members with early stage dementia initiated several projects raising public awareness about the existing social mechanisms of exclusion and the fight for normalizing the condition  – especially for patients in the early phases of dementia. Such activities included visits to schools and public institutions. In slight contrast to the POs for, the POs of stressed particular assistive technology for ensuring independence. The difference between national cultures in advocacy became most visible in the understanding and practice of representation. At one end of the spectrum was the Israeli PO for, which was not ready to endorse self-advocacy at all. The German POs for were more supportive of self-advocacy (some included persons with dementia on their advisory board), but defended a mixed, complementary approach. In contrast, the interviewed representatives of German POs of stressed an ideal of self-­ representation that has had to struggle with disbelief and misunderstanding from the start. Interviewees from POs for did not ignore potential conflicts that arise when caregivers and relatives speak on behalf of individuals with dementia. However, they either stressed the incapacity of those individuals or the burden of caregivers, as well as that there is always a close bond between family caregivers and their family members with dementia. In contrast, interviewees from POs of explicitly and critically reflected upon problems with family members that even led to intra-­ familial discrimination. For them, it was important that family members acknowledge the person with the capacities he or she still has. Interviewees from POs for also pointed out the emphasis on expectations regarding the competences of the caretaker (as attentive, trustful, creative etc.). Interviewees from POs for tended to focus only on social discrimination and located the problem in the psychological denial of persons with dementia to recognize their limitations. Importantly, from a cross-cultural perspective, and though holding different positions in the context of intra-familial relationships, both POs of and for in Germany shared a resource-­ oriented rather than deficit-oriented approach.

13.5 Conclusion Overall, a general ethical issue from a theoretical perspective remains how the patient perspective can be represented in a balanced and consistent way in health care politics [38]: The possibility of self-advocacy warrants assistance and support, even if the relatively newer and smaller POs of dementia that are emerging in Germany do not yet differentiate themselves very much from the traditional and more established POs for in terms of what they are lobbying for. In comparison with Alzheimer Europe and the US Alzheimer’s Association’s focus on ‘expert’ and professional voices, the integration of early diagnosed patients or high-functioning

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ADRD patients in advocacy structures can be understood as a convergence that might strengthen existing POs for. For example, Alzheimer Europe has started to stress the positive potentials of early diagnosis for preparing advance care planning and advance research directives,7 but is very hesitant to discuss the concrete potential for its own practice of political representation. For the same reasons that people in the early stages of ADRD should participate in advocacy, it is important to also include representatives of those who have severe cognitive disabilities. Otherwise, the advocacy groups may purport to represent the entire ADRD population and yet not adequately take this group’s needs into account. While moving beyond partial representation is important, it also poses difficult challenges. It is recommended that advocacy groups that choose not to represent the entire population of patients make clear who they are representing when asserting their policy positions. The stark difference in dementia self-advocacy between Germany and Israel, two countries with quite similar early stage dementia diagnosis services, highlights the cultural entanglement of stigma and advocacy in the context of dementia. When POs for address the stigma of dementia, they may inadvertently also amplify it, especially as part of lobbying and fundraising campaigns that capitalize on vulnerability. Indeed, many of the Israeli office-holders of the PO for dementia stressed that stigma was the reason for the organizational agenda of raising awareness, as well as why early stage dementia patients were not ready to pay the social price of being labeled, thus avoiding the PO’s services. The Israeli Director of the PO for dementia lamented the organization’s failure to organize self-support groups for early stage dementia patients because the latter, he said, were not ready to step forward and receive help. It appears that POs of, such as those we studied in Germany, have a crucial role to play in breaking this vicious circle of stigma and dementia. Such stigma may also be a relevant factor influencing communication regarding early dementia detection and prevention. Under such direct conditions of social stigma, which stresses and amplifies the loss of the patient’s self-determination, agency and voice, the emergence of selfadvocacy dementia groups is in itself radical—even if POs of dementia do not yet present any radical alternative to biomedicalization. The social drive to build up frameworks for representation and voice may be connected to broader, national cultural mores of autonomy and self-determination. In Israel, family members are consensually seen as the ‘natural’ and best representatives and caregivers of people with dementia. Losses of autonomy, agency and self-advocacy are mitigated by the Israeli commitment to relational autonomy, i.e., that like other family members (usually women), the autonomy of the person with dementia is constituted, and to an extent replaced by, family care. German culture, which prioritizes individual self-determination over family relationships, contrasts with this. In Germany, therefore, there is much more concern about the social challenge for people with dementia who must have their families ‘speak for them’, whereas in Israel this would be taken for granted. This explanation could also be substantiated by comparing different national patterns of home-based vs institution-based care for dementia patients.  http://www.alzheimer-europe.org/Policy-in-Practice2/Our-opinion-on/Advance-directives.

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In this sense, the quest for representation in POs as well as how POs are represented in health politics or bioethical debates is closely linked to our understanding of empowerment for people with dementia and their collective autonomy. Future research on these debates and negotiations should help to identify the limits of skepticism and political interests, as well as foster a critical discussion regarding self-advocacy. The way forward, we argue, depends on finding a way out of the stigma associated with dementia, which involve a focus on loss of identity and personality, heteronomy and social isolation. In this sense, we speculate that current developments in dementia diagnostics and early prediction will likely lead to reductions or alterations in social stigma related to ADRD as well as the structures of POs—if POs are open to these developments. Acknowledgments  We would like to thank our colleagues Nitzan Ramon-Zarfaty, Karin Jongsma, and Bosmat Bar-Nadav for their collaboration in empirical data collection and analysis of the studies which are the backbone of this chapter. We would also like to thank the editors for constructive and detailed feedback regarding content and editorial aspects. This work was generously supported by Lower-Saxony— Israeli collaboration project ZN3015, ‘Organized Patient Participation in Health Care: Collective Advocacy, Representation and Autonomy in Socio-Ethical Perspective (Abbr. OPARA)’. We are grateful to all the respondents, as well as to the participating associations, in Germany and Israel.

References 1. Raz A, Jordan I, Schicktanz S. Exploring the positions of German and Israeli patient organizations in the bioethical context of end-of-life policies. Health Care Anal. 2014;22:143–59. https://doi.org/10.1007/s10728-­012-­0213-­4. 2. Schicktanz S.  The visionary shaping of dementia research: imaginations and scenarios in biopolitical narratives and ethical reflections. In: Schweda M, Pfaller L, Brauer K, Adloff F, Schicktanz S, editors. Planning later life. Bioethics and public health in ageing societies. 1st ed. Oxon, New York: Routledge; 2017. p. 205–27. 3. Schicktanz S, Rimon-Zarfaty N, Raz A, Jongsma K. Patient representation and advocacy for alzheimer disease in Germany and Israel: the relevance of stigma and disease conception. J Bioeth Inq. 2018;15:369–80. https://doi.org/10.1007/s11673-­018-­9871-­8. 4. Chandler S. Competing realities: the contested terrain of mental health advocacy. New York: Praeger; 1990. 5. Brown P, Rachel Morello-Frosch R, Zavestoski S. Contested illnesses, citizens, science, and health social movements. Berkeley: University of California Press; 2011. 6. Brown P, Zavestoski S, McCormick S, Mayer B, Morello-Frosch R, Gasior Altman R. Embodied health movements: new approaches to social movements in health. Sociol Health Illn. 2004;26:50–80. https://doi.org/10.1111/j.1467-­9566.2004.00378.x. 7. Wood B.  Patient power? The politics of patients’ associations in Britain and America. Birmingham: Open University Press; 2000. 8. World Health Organization. Towards a dementia plan: a WHO guide. 2018. https://apps.who. int/iris/bitstream/handle/10665/272642/9789241514132-­eng.pdf. Accessed 7 Oct 2019. 9. Raz A, Jongsma KR, Rimon-Zarfaty N, Späth E, Bar-Nadav B, Vaintropov E, et  al. Representing autism: challenges of collective representation in German and Israeli associations for and of autistic people. Soc Sci Med. 2018;200:65–72. https://doi.org/10.1016/j. socscimed.2018.01.024.

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10. Charlton J. Nothing about us without us: disability oppression and empowerment. Berkeley, Los Angeles, London: University of California Press; 2000. 11. Paul D. Patient advocacy in newborn screening: continuities and discontinuities. Am J Med Genet C Semin Med Genet. 2008;148:8–14. https://doi.org/10.1002/ajmg.c.30166. 12. Beard RL.  Advocating voice: organisational, historical, and social milieux of the Alzheimer’s disease movement. Sociol Health Illn. 2004;26:797–819. https://doi. org/10.1111/j.0141-­9889.2004.00419.x. 13. Beard RL, Fox PJ. Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Soc Sci Med. 2008;6:1509–20. https://doi.org/10.1016/j. socscimed.2007.12.024. 14. Fox P. The role of the concept of Alzheimer’s disease in the development of the Alzheimer’s Association in the United States. In: Whitehouse P, Maurer K, Ballenger J, editors. The concept of Alzheimer’s disease: biological, clinical, and cultural perspectives. Baltimore: The Johns Hopkins University Press; 2000. p. 209–33. 15. Langstrup H.  Interpellating patients as users: patient associations and the project-­ ness of stem cell research. Sci Technol Hum Values. 2010;36:573–94. https://doi. org/10.1177/0162243910368397. 16. Crossley N.  Contesting psychiatry: social movements in mental health. New  York: Routledge; 2006. 17. Morgan S. Into our own hands: the women’s health movement in the United States, 1969–1990. Piscataway: Rutgers University Press; 2002. 18. Callon M, Rabeharisoa V. The growing engagement of emergent concerned groups in political and economic life—lessons from the French association of neuromuscular disease patients. Sci Technol Hum Values. 2008;33:230–61. https://doi.org/10.1177/0162243907311264. 19. Jox RJ, Spickhoff A, Marckmann G. Forschung mit nicht Einwilligungsfähigen: Nach dem Gesetz ist vor dem Gesetz. Dtsch Arztebl. 2017;114:A520/B–451/C–441. 20. Korzilius H.  Forschung an Nichteinwilligungsfähige: Bundestag stimmt für umstrittenes Gesetz zu klinischen Prüfungen. Dtsch Arztebl. 2016;113:A–2078/B–1728/C–1712. 21. National Advisory Board of Bioethics. Research involving persons with mental disorders that may affect decisionmaking capacity. 1998. https://bioethicsarchive.georgetown.edu/nbac/ capacity/TOC.htm. Accessed 7 Oct 2019. 22. Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. 1997. https://www.coe.int/en/ web/conventions/full-­list/-­/conventions/rms/090000168007cf98. Accessed 7 Oct 2019. 23. Epstein S. Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press; 1996. 24. Schicktanz S, Schweda M, Franzen M. ‘In a completely different light’? – The role of being affected for epistemic perspectives and moral attitudes of patients, relatives and lay people. Med Health Care Philos. 2008;11:57–72. https://doi.org/10.1007/s11019-­007-­9074-­2. 25. Rippe KP.  Ethikkommissionen in der deliberativen Demokratie. In: Kettner M, editor. Angewandte Ethik als Politikum. Frankfurt am Main: Suhrkamp; 2000. p. 140–64. 26. Schicktanz S.  The ethical legitimacy of patient organizations’ involvement in politics and knowledge production: epistemic justice as conceptual basis. In: Wehling P, Viehöver W, Koenen S, editors. The public shaping of medical research. Oxon: Routledge; 2015. p. 246–65. 27. Schicktanz S.  Epistemische Gerechtigkeit: Sozialempirie und Per-spektivenpluralismus in der Angewandten Ethik. Dtsch Z Philos. 2012;60:269–84. https://doi.org/10.1524/ dzph.2012.0019. 28. Fricker M.  Epistemic injustice: power and the ethics of knowledge. New  York: Oxford University Press; 2009. 29. Jongsma K, Späth E, Schicktanz S. Epistemic injustice in dementia and autism patient organizations: an empirical analysis. AJOB Empir Bioeth. 2017;8:221–33. https://doi.org/10.108 0/23294515.2017.1402833.

236

S. Schicktanz and A. Raz

30. O’Donovan O, Moreira T, Howlett E. Tracking transformations in health movement organisations: Alzheimer’s disease organisations and their changing ‘cause regimes’. Soc Mov Stud. 2013;12:316–34. https://doi.org/10.1080/14742837.2013.777330. 31. Hazan H. Against hybridity: social impasses in a globalizing world. Cambridge: Malden Polity Press; 2014. 32. Lock M.  The Alzheimer conundrum: entanglements of aging and dementia. Princeton, Woodstock: Princeton University Press; 2013. 33. Werner P, Mittelman S, Goldstein D, Heinik J.  Family stigma and caregiver burden in Alzheimer disease. Gerontologist. 2012;52:89–97. https://doi.org/10.1093/geront/gnr117. 34. Aisen PS, Cummings J, Jack CR Jr, Morris JC, Sperling R, Frölich L, et  al. On the path to 2025: understanding the Alzheimer’s disease continuum. Alzheimers Res Ther. 2017;9:60. https://doi.org/10.1186/s13195-­017-­0283-­5. 35. Gilad D, Rimmerman A. The mission and development processes of the disability movement in Israel and the United States: a comparison. J Disabil Policy Stud. 2014;24:227–37. https:// doi.org/10.1177/1044207312463238. 36. Heyer KC. The ADA on the road: disability rights in Germany. Law Soc Inq. 2002;27:723–62. https://doi.org/10.1111/j.1747-­4469.2002.tb00980.x. 37. Mor S.  Disability rights in Israel: between socio-political and legal recognition. In: Gal J, Eisenstadt M, editors. Access to justice and social rights. Jerusalem: Taub Center for Social Policy Studies in Israel; 2009. p. 80–130. 38. World Health Organization. A declaration on the promotion of patients’ rights in Europe. 1994. http://www.who.int/genomics/public/eu_declaration1994.pdf. Accessed 10 Oct 2019.

Legal Capacity in the Civil Legal Lives of Persons with Dementia in Taiwan: Implications of the Convention on the Rights of Persons with Disabilities

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Kevin Chien-Chang Wu

Contents 14.1  I ntroduction 14.2  C  apacity and Competence in Law: Variety of Legal Frameworks 14.3  Disability, Civil Legal Capacity and the Implications of CPRD for Persons with Dementia in Taiwan 14.3.1  Disability in Taiwan 14.3.2  Long-Term Civil Legal Capacity for Agency in Taiwan 14.3.3  Short-Term Civil Legal Capacity for Action in Taiwan 14.3.4  Short-Term Legal Capacity for Psychiatric Admission and Treatment Measures in Taiwan 14.4  The Utilization of Neuroscientific Evidence in the Courts in Taiwan to Determine Civil Legal Capacity 14.4.1  Utilization of Neuroscientific Evidence to Determine Civil Legal Capacity of Persons with Dementia 14.4.2  The Implication of the CRPD and Neuroscience for Court Determination of Legal Capacity in Taiwan 14.5  Conclusion: Legal Capacity, Neurolaw and the CPRD for the Civil Legal Lives of Persons with Dementia in Taiwan References

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K. C.-C. Wu (*) Department/Graduate Institute of Medical Education and Bioethics, National Taiwan University College of Medicine School of Medicine, Taipei City, Taiwan Department of Psychiatry, National Taiwan University College of Medicine School of Medicine, Taipei City, Taiwan Graduate Institute of Interdisciplinary Legal Studies, Taipei City, Taiwan National Taiwan University College of Law, Taipei City, Taiwan Institute of Health Policy and Management, National Taiwan University College of Public Health, Taipei City, Taiwan Department of Psychiatry, National Taiwan University Hospital, Taipei City, Taiwan e-mail: [email protected] © Springer Nature Switzerland AG 2021 V. Dubljević, F. Bottenberg (eds.), Living with Dementia, Advances in Neuroethics, https://doi.org/10.1007/978-3-030-62073-8_14

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Abstract

As the number of persons with dementia increases around the world, dementia is becoming a major public mental health and economic issue. Law, which is just as much a part and parcel of culture, is an important sector for constructing an integrated institutional framework to respect the dignity of and offer care to persons with dementia. However, literature that systematically explores the legal lives of persons with dementia has been inadequate. This chapter initially attempts to delineate the approaches to legal capacity that separately emphasize personal status, behavior outcome, personal function and human rights as the main consideration for determining legal capacity. It covers institutions of disability certificate, long-term and short-term legal capacity for nonspecified events, and short-term legal capacity for health care events in Taiwan. Based on public surveys and court decision datasets in Taiwan, this chapter aims to demonstrate the ambivalence, complexity and difficulty for Taiwan to comply with the Convention on the Rights of Persons with Disabilities (CRPD). A hasty implementation of the CRPD’s ideal of legal capacity for all not only clashes with people’s cultural imaging of civil legal lives, but also may lead to violations of other human rights protected by the CRPD.  Though the CRPD General Comment No. 1 opposes the use of mental capacity for determining legal capacity, it is still inevitable we use the concept of mental capacity to determine whether persons with dementia are able to communicate and express their will and preferences. For the time being, neuroscience is neither necessary nor sufficient for determining legal capacity in Taiwan. The chapter suggests that we could use the concept of wide reflective equilibrium to understand the evolution of legal capacity institution. With incremental enhancement of reasonable accommodation and support, the CRPD and neuroscience may shift the equilibrium point of legal capacity in the long run. But, a rush to adopt the ideal of legal capacity for all may hinder the protections of human rights to health and finance, among others.

14.1 Introduction In 2012, a report by the World Health Organization estimated that the number of people with dementia will double every two decades, reaching 115–150 million in 2050 [1, 2]. Dementia has incurred enormous financial burdens in healthcare and social service, costing up to nearly 60.4 billion U.S. dollars in 2010 and one trillion dollars in 2018 [1, 3, 4]. The total population of Taiwan was 23.5 million in 2018. Among people older than 65 years (3.43 million), 26% of them have dementia or mild cognitive impairment. It was predicted that 2% of people in Taiwan will have dementia in 2030 [5]. The fact that dementia has become such a prominent public health and financial

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issue in Taiwan, raises concerns as to what the civil legal context for persons with dementia living in Taiwan is like. As an instrument of governance, law has an important impact on the lives of persons with dementia, as it may significantly contribute to enhancing the quality of life of those affected by dementia, provided we can combine the best legal, public health and economic approaches. Legal governance is based on some standardized images of human beings. The symptoms and signs of dementia that disrupt those images demand specific legal designs for people with dementia. One core legal issue regarding people with dementia relates to their capacity as recognized by the law to engage in civil legal lives, i.e., how to conduct their lives according to the guidance of the civil law [6]. To make a legally binding informed consent, it is necessary that the person is recognized by the law as having sufficient legal capacity. For those who have insufficient capacity, the law has to set up legal schemes to facilitate their conduction of legal transactions in society under the support, representation and/or custody of their caregivers. As persons with dementia tend to have cognitive impairment and/or disability, a good scheme of legal capacity is important for respecting their autonomy, protecting their benefits, and treating them fairly [7]. As the first human rights convention of the twenty-first century, the United Nations Convention on the Rights of Persons with Disabilities (the CRPD) intends “[t]o promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” It has made a strong case for the non-alienable legal capacity of persons with mental or psychosocial disabilities (including dementia). Adopted by the United Nations in 2006, the CRPD came into force in 2008. Based on data from its official website, the CRPD has 163 signatories and has been ratified by 181 countries/regions [8]. The United States signed the Convention, but it fails to ratify it into the law. Though not a signatory of the Convention, Taiwan has adopted the Convention as domestic law through legislative procedure. Abundant literature deals with the legal capacity of persons with mental or psychosocial disabilities, but no systematic examination of legal capacity has been performed regarding persons with dementia in Taiwan. Parallel to this trend of developing courses of legal capacity, advances in neuroscience have rendered the diagnosis and management of dementia more delicate than ever. Based on new findings, the crude term “dementia” has been refined to include a variety of cognitive disorders: Alzheimer’s disease, frontotemporal dementia, dementia with Lewy bodies, vascular dementia, and dementia due to substance use or other medical conditions [9]. With the further refinement of the portrayals of dementia, it is intriguing to explore how the courts in Taiwan could refer to neuroscience for guidance on governing issues related to dementia, and how Taiwan, as a country that abides by the CRPD, might integrate neuroscience into law in the context of the CRPD [10]. As the chapter will show below, the CRPD and neuroscience have so far only minor impacts on the civil lives of persons with dementia in Taiwan in the domain of legal regulation and court interpretation. Some survey results even revealed that a large proportion of mentally ill patients might not support the CRPD’s position on

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legal capacity institution. The discourses of neuroscience and the CRPD scholarship are fascinating, but change to the legal capacity institution is related to multiple sectors at different levels and does take time and experience to reach the CRPD’s ideal of legal capacity for all. Taking Taiwan as an example, the chapter aims to demonstrate the ambivalence, complexity and difficulty for a country to comply with the CRPD ideals and incorporate them into the civil legal lives of persons with dementia. The second section addresses the legal frameworks for determining legal capacity. The third section delineates the current legal framework for determining civil legal capacity in Taiwan. To exemplify the civil legal lives of people with dementia in Taiwan, the chapter discusses several relevant topics of law, including disability certification, nonspecified civil legal affairs, general medical decision-making and psychiatric care decision-making. Following each description of the laws and/or regulations concerning an area of law, it will address the implications of the CRPD for each civil legal capacity determining institution. Based on data from surveys and court decisions, the fourth section addresses issues related to the law’s consideration of neuroscientific findings in Taiwan. The chapter concludes with reflections on the reconciliation of the CRPD’s legal capacity approach with neurolaw regarding legal capacity determination in the civil legal lives of people with dementia in Taiwan.

14.2 C  apacity and Competence in Law: Variety of Legal Frameworks Capacity or competence is an important institution in law. Capacity in law confers people with legal powers to have legal standing (holders of rights and obligations) and/or have legal agency (actors who can make valid binding legal decision) [11]. Legal standing is a necessary, but not sufficient, condition for legal agency. A person may hold a right which they themselves cannot exercise. In regards to the literature, there have been four approaches to the qualifications for capacity in law [11, 12], which will be outlined below. The first is called the status approach. It maintains that people could be disqualified as rights holders or actors simply because they hold a status societally deemed as inherently disqualifying (historically, to be a slave, female, or mentally ill, for instance). Once they belong to a status category, capacity will be determined as such, regardless of the fact that people in a given status category possess large characteristic variation or similar abilities with those not belonging to the category. Thus, when addressing legal disputes in the past, the courts tended to rule that a person’s procedural and substantial legal actions were invalid once he or she was suspected to have a mental illness. In the contemporary case of mental illness, to maintain due process of law, legal entities (such as courts or administrations) in charge of capacity determination often consult psychiatric or psychological experts for affixing such status labels on a person. The status approach has been criticized as outright discrimination and has been the focus of international human rights treaties [12, 13]. The second approach to legal capacity is the outcome approach. Usually, the construal of outcome is based on “objective” evaluation of an authority rather than

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the “subjective” feeling of the subject. If a person’s legal action has beneficial outcomes for themselves, they would be recognized as competent. Conversely, if the outcome is risky for or harmful to them, they would be deemed incompetent. For example, a patient would be deemed incompetent if he refused an operation very beneficial to himself, but competent were he to consent [12, 13]. Thus, it is possible that the state could reject someone’s risky choice by declaring a person incompetent without examining the reasons for the choice. Scholars have criticized this kind of hidden paternalism in setting up the capacity standard based on risk [14]. The third approach to legal capacity is the functional approach, which links capacity to a person’s ability to perform legal actions. In general, the law will set up a threshold of function or ability (sometimes called mental capacity) for determining capacity in law. In the legal binary operation, those whose functions are below the threshold are considered incompetent [12, 13]. Generally speaking, medical professionals assess a person’s functional level, but it is legal authority to set the threshold and finalize the conclusion of (in)competence. However, in many jurisdictions of continental law, including Taiwan, legal authorities usually accept medical experts’ clinical determinations of capacity without serious challenges. Sometimes, physical disability could be so impairing that it is not possible to communicate with a person for assessment. This person would be construed as one who lacks cognitive function and capacity. The functional approach can avoid the drawbacks of the previous two approaches by relying on more fine-grained functional differentiation to shrink the size of the population with incompetence. A person with dementia will not be deemed incompetent merely due to a diagnosis (i.e., a status), neither will she be considered incompetent merely because she refuses an operation with beneficial outcome. The functional approach recognizes the variety of abilities of persons in a specific category (i.e., status). It deems some persons as capable of making a specific risky decision (i.e., outcome), but others not. On this view, the ideal decision-maker in a legal transaction can understand the relevant legal facts, appreciate their value to him or her, use the facts logically to reach his or her conclusion, and express a stable choice [15]. The decision-maker must also have good enough memory to retain information for balanced reasoning [16]. Additionally, a legal decision based on a stable religious commitment or philosophical stance must be respected even if it contradicts the authority’s best interest judgment. Thus, the functional approach is more human-rights friendly than the status and outcome approaches. The above three approaches could be integrated to further decrease the number of persons deemed incompetent to take legal actions. If the declaration of incompetence is a human rights violation per se, then on the face of it, the integrated approach could reduce the extent of the human rights violation. For example, in some jurisdictions, only persons with a mental illness who fail the functional standard will be determined to be incompetent. Moreover, paired with the outcome-oriented sliding scale of the competence approach, the functional standard could be adjusted according to the degree of risk. If the degree of risk is low, then the competence threshold could be set lower and more decision-makers be recognized as competent [14]. Thus, by means of integrating three approaches and their respective modes of

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differentiation, the number of persons deprived of their rights to make autonomous choices could be further diminished compared to any single approach in isolation. It could be argued that based on a utilitarian perspective, the severity of the human rights violation could be reduced to a great extent by restricting the number of persons deemed incompetent to a minimum. It is almost “commonsensical” that a lower incidence rate of human rights violation is better than a higher one. Arguably, it is similar to the value judgment in the statement that we prefer a lower number of COVID-19 cases than a larger one. However, the practice of protecting human rights through delicate differentiation (discrimination) still has a potential hidden cost of treating people unfairly or prematurely deeming them legally incompetent. Therefore, once praised as a humane way of constructing legal capacity, the functional approach has become the target of criticism based on a strong version of the human rights approach to capacity. As the fourth approach to legal capacity, the human rights approach is represented in paragraph 2 of Article 12 of the CRPD: “States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” Accordingly, denial of legal capacity based on mental or psychosocial disability of persons, i.e., those with cognitive impairment who are disabled by social, interpersonal or material barriers, is prohibited by the CRPD. If mental/psychosocial disability is equated to the inability to meet the cognitive function (mental capacity) standard by law, the functional approach to capacity will be an outright discrimination and should be rejected. For some commenters, even using disability or diagnosis of mental illness as a status indicator for initiating assessment of capacity is an unacceptable discrimination [17]. Thus, since the above three approaches are connected with the phenomenon or label of cognitive impairment, they are all deemed unacceptable by the CRPD. According to paragraph 3 of Article 12 of the CRPD, “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” The General Comment No. 1 (GC No. 1) issued by the Committee on the Rights of Persons with Disabilities calls for the abolition of the institution of determining legal capacity based on mental capacity. All persons with disabilities should be supported to exercise their legal capacity, the existence of and right to which is never to be denied. Based on paragraph 4 of Article 12 of the CRPD and the GC No. 1, instead of making decisions for persons with disabilities, supporters must respect their rights, will and preferences. However, when in some hard cases it is not possible to communicate with persons with disabilities, supporters must make a “best interpretation” of will and preferences of these persons with disabilities [11]. Ultimately, following these guidelines of the human rights approach would eliminate the need and justification for assessing legal capacity, i.e., the ability for both legal standing and legal agency. As a human right to dignity, legal capacity must not be deprived. Thus, the main issue that arises is how to optimize both the interpretation and ascertainment of will and preferences and to follow appropriate and effective safeguards against abuse. This approach has encountered criticism. Rejecting the possibility of substitute decision-making and proportionality reasoning, the ideal of legal agency for all

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may inadvertently infringe upon persons with disabilities’ rights to liberty, life, access to justice, and the highest attainable level of health. Without the possibility of using justified coercive measures in caring for the mentally ill, the stigmatizing stereotypes of the “dangerous” mentally ill will become further entrenched in public perceptions of persons with mental illness and exacerbate stigma surrounding these persons [18]. Once praised as the paradigm for ideal mental health legislation that integrates the functional, outcome and status approaches to legal capacity, the World Health Organization’s Resource Book on Mental Health, Human Rights and Legislation [19] has now become outdated and inapplicable to protecting the human rights of persons with disabilities [18]. The CRPD’s human rights approach to legal capacity not only has brought forth impetus for creative innovations, but has also generated many debates and difficulties for legal policy making. At this time, no country that has ratified the CRPD achieves the CRPD ideal of legal capacity for all, even though a few countries are making efforts under the mandate of the GC No. 1 (Paragraph 30) that state parties should make changes immediately [20]. Some scholars have argued that legal capacity belongs to the domain of civil and political rights and that the state has the “obligation of result” to make legal capacity for all effective immediately [21]. Although the mandate is an ideal worthy of pursuit, as legal capacity is tightly connected to other rights such as liberty, life, justice, and physical and mental health, it is almost a mission impossible to change every relevant aspect right away to fulfill the mandate.

14.3 D  isability, Civil Legal Capacity and the Implications of CPRD for Persons with Dementia in Taiwan As cognitive impairment is the main symptom of dementia, the concerns about the legal capacity of persons prevail in almost every aspect of the lives of persons with dementia. The examination of the legal provisions governing capacity issues is an important initial step to draw the picture of the civil legal lives of persons with dementia. In Taiwan, there is no specific law addressing legal issues related to dementia. This section’s review will be based on selected statutes relevant to legal capacity determination of persons with dementia. Although Taiwan is not a signatory of the CRPD, in 2014 it incorporated the CRPD into its domestic law by promulgating the Act to Implement the Convention on the Rights of Persons with Disabilities. According to Article 3 of the Act, “Legal and administrative applications of the Convention shall refer to the Convention’s legislative purposes and interpretations by the Committee on the Rights of Persons with Disabilities of the United Nations.” Thus, in Taiwan, when it comes to legal capacity, the CRPD and the GC No. 1 should have priority as the basis for legal interpretation and application. Any statutes, regulations, or measures violating the CRPD and the GC No. 1 should then be deemed invalid. There is ample ambivalence, complexity, and difficulty surrounding the achievement of the CRPD ideal of legal capacity for all in Taiwan. Cultural beliefs such as

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Confucianism and the family unit, which are prevalent in Taiwan as a result of its cultural and geographical status as an East Asian country, still have much influence on how people live their lives in Taiwan [22]. Especially when it comes to health care, life and death, it is common that family members make decisions for their disabled or ill relatives. Given that law is an integral part of culture [23], in Taiwan, the institution of family decision-making is also reflected in some statutes in the country. In general, the practice could be construed as substitute decision-making. Before its transformation, whether family-based or not, the substitute decision-­ making institution was in fact severely disparaged by the scholars advocating for strong interpretations of the CRPD and the GC No.1 [11]. However, family members’ mutual care for each other is actually a fertile ground for developing the institution of supported decision-making. As used in the CRPD, legal capacity is a very broad term. Oftentimes, the term does not suffice for fine-grained legal reasoning. It is necessary to differentiate among different kinds of capacities in the legal context of Taiwan. Therefore, when appropriate, the chapter will use “capacity for rights” (legal standing) and “capacity for agency” (legal agency) to distinguish a person’s long-term nonspecified civil legal capacity [11]. When it comes to the capacity for decision-making in a legal action, the phrase “short-term legal capacity for action” (sometimes called mental capacity) will be used. The short-term legal capacity could be either nonspecified or specified (e.g., in civil events such as health care). Finally, in the domain of medical assessment of capacity, the chapter will use the dimensional term “mental function” or “cognitive function” to make a contrast with the legal category determination of capacity by the authority. It is important to remember that a person’s factual mental ability or mental function may fluctuate even if he or she is recognized to have long-­ term legal capacity. In other words, a person having long-term legal capacity could lack specific legal capacity for a certain action at a material time. Long-term capacity is a legal instrument, perhaps a legal fiction, justified by respecting the dignity and enhancing the lives of incapacitated people with adequate policy convenience and efficiency. According to Article 6 of the Civil Code in Taiwan, all living human beings have legal capacity for holding rights and being afforded obligations. Thus, people with dementia have full legal standing/status according to the GC No. 1. No matter how severe the symptoms of their dementia are, persons with dementia have long-term legal capacity for rights if they are alive. Since there is no debate on the issue of capacity for rights, the goal of this section is to help readers understand Taiwan’s intricate system of legal capacity for agency, wherein persons with dementia conduct their legal lives. This section will address the constraints or supports implied by CRPD for persons with dementia in Taiwan. The first subsection describes how disability is recognized officially in Taiwan. Disability as welfare status rendered this way actually does not relate directly to legal capacity and is underinclusive by the disability definition of the CRPD. The second subsection addresses the determinations and constraints of long-term legal incapacity for performing legal actions, which include

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considerations of age, marital status, and assistorship or guardianship. It shows that a modified version of assistorship might be compatible with the requirement of the CRPD. The third subsection delineates several kinds of short-term legal capacity, including nonspecified decision-making and specific medical decision-making. The temporary deprivation of short-term legal capacity based on the impairment of dementia is also a violation of the CRPD. How to set up timely, reasonable support and accommodation is a huge challenge. The fourth subsection addresses short-­ term legal capacity in psychiatric decision-making. The CRPD and the GC No.1 have fiercely criticized the compulsory psychiatric measures that deprive the legal capacity of the mentally ill. However, the CRPD and the GC No.1 have failed to provide adequate guidance in managing hard cases based on the proportionality principle.

14.3.1 Disability in Taiwan To be qualified for disability social welfare support, a person has to apply for and obtain a disability certificate in Taiwan. Having a disability certificate is often a sufficient but non-necessary condition for the disability as defined in the CRPD. On the other hand, disability certification is not related to the determination of legal capacity directly. In the following, the subsection will describe the definition of disability and the procedure for its official determining in Taiwan. Then, the implication of the CRPD will be explored.

14.3.1.1 Disability Certification in Taiwan In Taiwan, the People with Disabilities Rights Protection Act “aims to protect the legal rights and interests of people with disabilities, secure their equal opportunity to participate in social, political, economic, and cultural activities fairly, while contributing to their independence and development” (Article 1). According to its Article 5, People with disabilities in this Act refer to those who with the following deviation or loss resulting from physical or mental impairments, are limited or restricted to be engaged in the ordinary living activities and participation in the society; and they, after processes of evaluation and assessment by the committee composed of professionals from medicine, social work, special education and employment counseling and evaluation, can be regarded as suffering one of the following malfunction categories and issued a disability identification…

In practice, Taiwan adopts a biopsychosocial approach based on the International Classification of Functioning, Disability and Health (ICF), which views disability as the “outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors” [24]. Thus, persons with dementia need to receive a first-round assessment by relevant medical experts (psychiatrists or neurologists) in order to ascertain their mental functions and certify their diagnoses. In the second-­ round assessment, other experts will attest to the conditions of their social

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participation and environments. Finally, after the third-round assessment of the persons’ need for support, local social administrations will issue the disability certificates [25]. Official recognition and identification is needed for persons with dementia to be qualified for specific official protection and social welfare support. In addition, as we will see below, no legal provision equates disability certification to the determination of legal capacity directly. A person’s having a disability certificate can only be construed as evidence for his lack or diminution of legal capacity.

14.3.1.2 T  he Implication of the CRPD for Disability Determination in Taiwan According to paragraph 2 of Article 1 of the CRPD, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” Also, in the preamble of the CPRD, disability is described as “an evolving concept” that “results from the interaction between persons with impairment and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.” Mere existence of mental impairment itself, such as dementia, is not a disability. In a human rights sense for utmost human rights protection, a government disables persons with dementia when it fails to provide needed supports to them in accordance with their rights, will and preferences, based on Article 12 of the CRPD. Thus, in an ideal jurisdiction, no one would have a disability since all the barriers would be removed and all the needed support provided. One problem with this ideal definition is that in actuality, some persons are so cognitively impaired that no amount of support or accommodation can enable them to express autonomous intentions. That is, sometimes the main issue may actually be the disabling physical or mental impairment per se, rather than the environment [26]. Another problem in this definition is how to set the duration of “long-term” [27]. Some mental impairments last days, others months, while still others have a fluctuating course of indeterminate length. To further complicate matters, before the onset of incapacitating dementia symptoms, other impairments might already be disabling persons with mild dementia. However, this may not be an issue for many persons with dementia since dementia usually has a prolonged and progressive course of deterioration. For the sake of enhancing the focus of the discussion, the chapter will omit situations of complex interactions between multiple impairments and mental disability. Disability as recognized in the Act has a narrower scope than that in the CRPD. A majority of persons with dementia in Taiwan do not have disability certificates. In 2018, compared to 890,000 elderly persons with dementia or cognitive disorders, only 55,000 (around 6%) persons with dementia had disability certificates (https:// dep.mohw.gov.tw/DOS/lp-­2976-­113.html). Because the proportion of persons with dementia having disability certificates is still low, to provide whole-scale and comprehensive support coverage to disabled people with dementia in Taiwan, the government has to look beyond the disability certification system.

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14.3.2 Long-Term Civil Legal Capacity for Agency in Taiwan Long-term civil legal capacity is determined based on a different set of criteria and procedures, in which the status of disability certification may be taken into consideration. Age, marital status and guardianship/assistorship are three conditions for ascertaining the prima facie long-term civil legal capacity for performing nonspecified legal actions. In the following, the ways of determining long-term capacity for agency will be described in greater detail. Then, the subsection will address the implications of the CRPD.

14.3.2.1 W  ays for Determining Long-Term Civil Legal Capacity for Agency in Taiwan Age and marital status considerations are based on legal imagination (or fiction) regarding when people can engage in social lives with enough independence. According to Article 13 of the Civil Code, those aged under 7 have no capacity for agency. Those aged over 20 are adults (Article 12) and have the full capacity for agency. Those aged above 7 and below 20 have limited capacity for agency (Article 12), but those below 20 and married lawfully (males above 18 and females above 16) with the consent of their parents have capacity for agency (Articles 980 and 981). According to Article 14 of the Code, at the petition of qualified entities, the courts may issue the declaration of guardianship for those who are considered unable to make or understand expressions of legal intentions, or unable to appreciate the effects of expressions of legal intentions. Based on empirical analyses of U.S. court decisions, Grisso and Appelbaum summarized four main components often considered by the courts in determining capacity to consent to treatment: expressing a choice, understanding, appreciation, and logical reasoning [15]. Aside from logical reasoning, the above legal formula regarding ability assessment in guardianship in Taiwan is quite similar to the U.S. propositions summarized by Grisso and Appelbaum. According to Article 167 of the Family Act, the court’s decision must be based on the information obtained from consultation with medical experts for assessing the mental functions of people with mental impairments. In fact, the courts usually will not issue such declarations unless the medical experts predict that the assessed persons are suffering from a chronic illness with slim chances for long-term recovery of adequate mental functioning. According to Article 15 of the Code, once put under guardianship, the ward no longer has capacity for action. Unless in conflicts of interests or prohibited by law, the guardian becomes the ward’s legal representative (Article 1098) and may substitute the person to make civil law decisions except for those most private issues such as marriage, sex, etc. Managing legal affairs related to a ward’s living, protection, health care, and finance, the guardian shall respect the opinions of the ward and consider the ward’s physical and mental status and living conditions (Article 1112). In designating a guardian, the court shall base its ruling on the best interests of the ward, first by considering the ward’s views on the matter and then by reviewing

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all conditions, paying attention to issues of the ward’s physical and mental status, property situation, emotional relationship with family members or co-habitants, and conflicts of interest (Article 1111-1). According to Article 15-1, the court may issue a declaration of assistorship for those who are recognized to have obvious insufficient ability to make or understand expressions of legal intentions, or unable to appreciate the effect of expressions of legal intentions. Those put under assistorship still have long-term capacity for action. However, when it comes to significant civil law decisions such as being the responsible persons of a company, handling real estate, waiving the right to inheritance, etc., their legal action will not be effective unless consented to by their legal assistors. In its form, this arrangement is similar to co-decision-making by the ward and the assistor. However, the consent by an assistor is not needed in circumstances in which the person under assistorship obtains pure legal benefit or conducts legal actions out of necessity based on the person’s age, status, or daily living. Since June 2019, Taiwan has adopted a new institution of adult guardianship by agreement. According to Article 1113-2 of the Civil Code, a person may designate in advance a legal entity (or entities) to be his or her guardian(s), with the agreement of the entity (or entities), when in the future the person is put under guardianship by a court. The court shall designate the above entity (or entities) to be the guardian(s), unless the court finds enough evidential fact indicating that the guardian(s) act(s) against the interest of the ward or become(s) otherwise unqualified (Article 1113-4).

14.3.2.2 I mplications of the CRPD for the Long-Term Civil Legal Capacity for Agency for Persons with Dementia in Taiwan As objective qualifications, age and marital status are not concerned with the factual cognitive ability of persons with mental/psychosocial impairment. These married non-adults are deemed mature and independent enough to engage in family and social lives by their parents and the government. Age and marital status are thus impairment and disability neutral. The differentiation based on them is acceptable to the CRPD. Dementia is a chronic condition. When qualified entities petition for the declaration of guardianship or assistorship, persons with dementia usually have manifested diminished mental functions for some time. Persons with dementia under guardianship or assistorship usually have long-term mental or psychosocial impairments and disabilities. Issues about long-term civil legal capacity and guardianship in Taiwan definitely are covered by the CRPD. Guardianship is fiercely criticized in the GC No. 1 and by scholars advocating for a human rights approach to legal capacity [11]. For those critics, the institution of substitute decision-making based on the existence or status of mental or psychosocial impairment or disability is an overt discrimination and should be abolished (paragraph 9, the GC No. 1). In Taiwan, persons with dementia put under guardianship are denied their long-term civil legal capacity for action. This is an obvious violation of the CRPD.

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The number of persons with dementia under guardianship has increased from 2009 (N = 1103) to 2018 (N = 5077). This seems to be a minority in comparison with the number of those with dementia and disability certificates (N = 55,578) in 2018. [28]. However, as Taiwan is becoming an aging society, it is no wonder the number of persons with dementia is getting higher gradually. While guardianship is deemed a violation against the CRPD, the situation is expected to get worse in the future. Article 1112 of the Civil Code contains wording such as “respect the opinions of the ward,” but it also advises the guardian to consider the ward’s physical and mental status and living conditions. Moreover, according to the Mental Health Act in Taiwan, a guardian does not have the power to enforce compulsory psychiatric admission of the ward with dementia (see below). On its face, some minimal level of respect for the ward’s autonomy is preserved. However, it is doubtful that the guardian will strictly follow the rule of respecting the ward’s will and preferences, as mandated by the GC No. 1, to support their ability to engage in civil legal lives. When it comes to the designation of guardians according to Article 1111-1, the court shall first consider the ward’s views, but it is also constrained by the consideration of best interests. Even though Taiwan has adopted the institution of adult guardianship by agreement, once put under guardianship, the ward is actually treated the same as in the traditional guardianship system. The ward loses his or her long-term capacity for action once the court issues the declaration of guardianship. Substitute, rather than supported, decision-making is the norm. Paternalism underlying Taiwan’s guardianship system has made it difficult for the ward’s opinions to trump the best interest consideration. In contrast to guardianship, assistorship in Taiwan does not deprive the person under assistorship of his or her legal agency. However, the person under assistorship may not modify the contents of the mandated co-agreement arrangement in assistorship. Except for legal actions with pure legal benefit and necessity, the assistor still has the final say about the validity of legal actions in the mandated co-agreement list. The will and preferences of persons with dementia are respected generally, but constrained in practice. There is no specific regulation on how the assistor should support the persons under assistorship in order to pursue the goals of the CRPD. At its core, the assistorship is then more like a limited guardianship. Nonetheless, with appropriate adjustments to its practices, such as the creation of assistorship by agreement, it is possible to develop a supported decision-making regime in Taiwan that is compatible with the CRPD’s mandates.

14.3.3 Short-Term Civil Legal Capacity for Action in Taiwan There are two kinds of short-term legal capacity in Taiwan. One is the capacity to conduct nonspecified legal transactions and the other is for specified legal actions. Excluding psychiatric care, this subsection focuses on the legal capacity for health care decision-making, since it is an important part of the daily lives of persons with dementia. It will then address the implications of the CRPD and the GC No.1.

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14.3.3.1 W  ays for Determining Short-Term Nonspecified Civil Legal Capacity for Action and Health Care Legal Capacity in Taiwan If an adult (over 20 years old) or lawfully married non-adult in Taiwan is not put under guardianship or assistorship, his or her legal action is presumed to be binding. Only when there is a formal complaint about a person’s capacity for an action will there be an examination of the person’s capacity by a court. According to Article 75 of the Civil Code, an expression of intention made by a person while unconscious or mentally deranged is void. This means that a person having long-term civil legal capacity may have no short-term civil legal capacity for a specific legal action at a material time. With the input of medical expertise, the courts match the observed mental functions to the threshold for specific capacity for action and decide whether a party had incapacity, thus making the legal action void. However, the courts seldom provide detailed instructions on the criteria for determining short-term nonspecified civil legal capacity. According to Articles 63 and 64 of the Medical Care Act, as regards surgery, anesthesia, invasive examination or treatment, medical care institutions shall explain the treatment to the patient or his or her legal representative, spouse, kin, or interested party, and must obtain his or her consent through a signed letter of consent. However, in cases of emergency, the above provisions do not apply. If the patient is not an adult or not able to sign the consent letter, the aforementioned persons other than the patient may sign the letter. According to Article 4 of Hospice Palliative Care Act in Taiwan, terminally ill patients may write a letter of will for the choice of hospice palliative care or life sustaining treatment. Article 5 stipulates that a person 20 years old or above with full civil legal capacity for action may write an advance letter of will regarding terminal care issues. Recording their intentions in such a letter, the person may designate a medical surrogate who may sign the letter when the person becomes unable to express his or her intentions. The law explicitly recognizes that family members have a significant role in terminal care decision-making. According to Article 8, health care professionals may choose to inform family members instead of the patient, unless the patient explicitly requests to be informed regarding the terminal illness diagnosis and care. In circumstances where a terminally ill patient does not write any letter of will, according to Article 7, his or her close relative may sign a surrogate consent form. If said patient does not have any close relatives, a medical order based on the best interest of the terminally ill patient would be issued instead, after patient examination by the hospice palliative care team. However, the above surrogate consent or medical order shall not contradict the explicitly expressed legal intentions of the terminally ill patient before the onset of unconsciousness or inability to express his or her will. The family-centered practice of informed consent is prominently reflected in the above provisions [29]. After the Patient Rights to Autonomy Act came into force in January 2019 in Taiwan, the application of formal medical advance directives began to go beyond the domain of terminal care. According to Article 8 of the Act, those with civil legal capacity may make an advance medical decision, and may revoke or alter it in

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writing at any time. The contents of the advance medical decision include life sustaining treatment and artificial nutrition and hydration. However, the content, scope and format of such advance decisions shall be established by the competent authority. Furthermore, by Article 14, the application of such advance decisions are restricted to the following clinical situations: terminal illness, irreversible coma, permanent vegetative state, severe dementia, and any other disease pronounced by the competent authority as incurable, causing unbearable conditions or suffering, and as having no other appropriate treatment options given current medical knowledge. According to Article 10, a person may designate a medical surrogate who shall be over 20 years old and agree with the designation in writing. When the person with advance medical planning falls into unconsciousness or is unable to clearly express his or her legal intentions, the medical surrogate may represent them regarding treatment based on the advance medical decision-making. Before implementing the advance medical decision made by the terminally ill person or other qualified patients who are conscious (i.e., not in a coma, persistent vegetative state or with profound dementia), medical facilities or health care professionals must confirm the contents and scope of the decision with any patients who still have short-term legal capacity for medical decision-making (Article 15). To make an advance medical decision, a person is required to receive advance medical decision counseling, in which the willing person, along with a close relative (second degree or closer), if available, and the medical surrogate must participate (Article 9). If the medical facility finds that the willing person has mental defects or is present involuntarily, it may refuse to certify the advance medical decision. Without the certification of the counseling medical facility, the advance medical decision will be invalid (Article 9). Based on Article 3 of the regulation for implementing the Act, a guardian or an assistor may intervene into the medical decision-making of a person put under guardianship or assistorship. However, if the person has made an advance medical decision when he or she had full civil legal capacity before the initiation of guardianship or assistorship, the guardian or the assistor must comply. To supplement the rules on short-term legal capacity for medical decision-making in the Act, Article 5 of the regulation stipulates: (1) significant others (legal representative, spouse, relatives, medical surrogates, or intimate others) may consent to medical measures for the patient if the patient does not object explicitly; (2) co-agreement by significant others is mandated for those with limited long-term civil legal capacity for action or obvious insufficient ability, or put under assistorship; (3) significant others may consent when the patient lacks long-term civil legal capacity for action, consciousness, or the ability to clearly express intentions.

14.3.3.2 I mplication of the CRPD for Short-Term Civil Legal Capacity of Persons with Dementia in Taiwan Since civil litigation is usually costly and there is no routine check of capacity, many persons with dementia may still conduct any legal action if they are not put under guardianship or assistorship. In a sense, the determination of short-term legal

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capacity for action may be disability neutral. It is not necessary for a person to suffer from long-term mental impairment to be determined to lack such capacity. However, when the validity of the legal action of a person with dementia is questioned, usually this is related to the long-term mental impairment and disability of the person. It is, however, a violation of the CRPD to determine the validity of a person’s legal action based on his or her mental disability at the material time. As one of the strongest interpretations, paragraph 9 of the GC No. 1 actually prohibits the denial of legal capacity-based impairment. Thus, Article 75 of the Civil Code would be construed as a violation of the CRPD. Nonetheless, as the scheme of supported decision-making is not yet well-established, to maintain that persons with dementia always have short-term legal capacity for action, it is possible that many persons with dementia will be required by law to take responsibility for their decisions no matter how impaired they were at the material time. This would also be a violation of the CRPD. Although Articles 63 and 64 in the Medical Care Act stipulate only the formal requirement of a treatment consent letter in risky medical practices, informed consent with or without consent letters has become the standard medical practice in Taiwan. Basically, the criteria for the specific legal capacity to consent to medical treatment are the same as that of Article 75 of the Civil Code. When it comes to general medical decision-making, issues of short-term civil legal capacity for action will be raised when a patient with dementia is unable to sign a consent form for the aforementioned risky treatment or examination. Under these circumstances, the challenge to the civil legal capacity for action of a person with dementia is also a violation of the CRPD. However, in Taiwan, a country with a cultural practice of family-centered medical decision-making, the law explicitly recognizes the legality of routinely involving family members in the circle of informed consent. In Chinese cultures, it is often observed that family members make decisions without the explicit objection from the person with dementia [30, 31]. The result is that family members tend to make decisions for the elderly, including those with dementia. It is still doubtful whether this should be recognized as an implicit co-agreement that respects the wills and preferences of the person with dementia. Theoretically, paternalistic family-centered support is different from the autonomy-based support stipulated by the CRPD. In practice, nonetheless, it is sometimes difficult to distinguish between these two kinds of support in Confucian cultures. Empirical evidence has shown that the proportion of terminally ill patients signing an (advance) letter of will was very low (0.17%) in Taiwan in 2009 [32]. In 2008, the author conducted surveys on convenient samples of terminally ill patients (N = 113), their family members (N = 258) and healthcare professionals (N = 240) regarding their opinions on terminal care in Taiwan [33]. Only 3% of the surveyed healthcare professionals, 11% of surveyed family members and 44% of the surveyed patients agreed that patients should be informed first. Peculiarly, 44% of the surveyed patients also disagreed that patients themselves should be informed first. The bimodal distribution of the patients’ opinions implies that there was hardly any popular consensus regarding the priority of patients’ will and preferences. As regards the assessment of legal capacity for terminal care decisions, most of the

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surveyed patients (58%), family members (53%) and healthcare professionals (60%) agreed that legal capacity could be determined based on common impression in individual interactions. It is reasonable to infer that in terminal care scenarios, if family members and healthcare professionals do not conflict in their opinions, it is hardly necessary for them to address issues of legal capacity of terminally ill patients for terminal care decisions. Their short-term legal capacity for healthcare decision-­ making will be challenged only when they refuse to accept the recommended care. This mode of legal capacity determination based on the integration of the outcome and functional approaches actually violates the CRPD and the GC No.1. Many terminally ill patients might suffer from dementia caused by different physical illnesses, including the terminal illness per se. The legal provisions and above empirical data could partly reveal that patients with dementia often are not informed of their terminal illness, even though they are determined to have legal capacity for terminal care decisions. It is not a regular occurrence that they actively participate in the decision-making process. Although the law emphasizes respecting the explicitly expressed legal intentions (will and preferences) of terminally ill patients, the above survey results put this in doubt. Since terminal illness has been a sensitive issue in information disclosure, the implicit unwillingness to receive the information is presumed in the law. If health care professionals choose not to communicate directly with the terminally ill patients, it is hardly possible for the patient to let his or her will and preferences be known. For those terminally ill with mild cognitive impairment or in early stages of dementia, it is still a difficult issue whether they could be deemed as disabled. Most of them still have long-term civil legal capacity, since they are not put under guardianship. However, it is possible that they do not have the short-term capacity for writing a letter of will without adequate support. In Taiwan, support from family members is mainly offered from a perspective of paternalistic protection and/or familial piety, often with the implicit consent or without the explicit dissent from patients. Scholars have proposed Confucian models of medical decision-making involving the patient and their family members, trying to reach a harmonious resolution in difficult end of life care issues [29, 30]. How to ascertain the will and preferences of patients with dementia and terminal illnesses, and shift the basis of familial support from paternalistic protection to respect for autonomy, remain challenging tasks for family members and healthcare professionals seeking to follow the CRPD. Promulgated after the CRPD implementation act came into force, the Patient Autonomy Rights Act is expected to better comply with the CRPD than its predecessors as regards the short-term capacity for (advance) medical directives. Expanding the application scope of advance medical directives, the Act actually goes one step further toward respecting the patient’s will and preferences (Paragraph 17, the GC No. 1). The mandatory counseling before making an advance medical directive may be considered to support the person with dementia to make advance planning for their care in the conditions covered by the Act. Also, the last inquiry into a person’s intention before implementing the advance medical decision could be deemed a good measure to respect the current will and

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preferences of the person with dementia. However, the validity of advance medical decision-making is still linked to guardianship, which is rejected by the CRPD for its discrimination against persons with dementia. On the other hand, for those not put under guardianship, it seems that dementia and mental disability will not be a formal concern. However, Article 15 of the Act and Article 5 of the regulation for implementing the Act introduce the assessment of ability to express legal intention. The determination of whether to respect the legal intention of a person with dementia in fact problematically hinges on the assessment of mental capacity. It also violates the mandates of the CRPD if a person’s advance medical directive is rejected because he or she has dementia (Paragraph 9, the GC No. 1). Lastly, the counseling for making advance medical directives is mandatory and the scope, contents and format of the advance medical decision must be specified by the competent authority. Thus, when making advance medical decisions, the will and preferences of the persons with dementia are actually constrained. This kind of practice still violates the interpretation of Article 12 of the CRPD based on GC No. 1.

14.3.4 Short-Term Legal Capacity for Psychiatric Admission and Treatment Measures in Taiwan Compulsory psychiatric treatment and admission measures have been a core human-­ rights issue, especially when impairment or disability is used as a condition for these. This subsection will address the legal capacity issues related to these measures in Taiwan and explore the implications of the CRPD and the GC No.1.

14.3.4.1 W  ays to Determine Short-Term Legal Capacity for Psychiatric Measures in Taiwan In Taiwan, all psychiatric admissions are assumed to be voluntary unless compulsory psychiatric admission procedure is initiated. There is no provision in Taiwan’s Mental Health Act specifying the criteria of voluntary psychiatric admission. In practice, if mentally ill patients are willing to sign the psychiatric admission consent form, the admission is deemed voluntary. However, when it comes to involuntary psychiatric measures, the provisions in the above Medical Care Act do not apply. This means that persons qualified to consent to general medical care for a patient are not permitted to consent to psychiatric admission or treatment measures for that patient. According to Article 41 of Taiwan’s Mental Health Act, only severely mentally ill patients (infra, severe patients) actually or at risk of committing harm to themselves or others can be admitted involuntarily, based on the decision of a governmental review committee. Only patients with “weird” thoughts and “unusual” behavior and the inability (at least in a short-term) to manage their affairs, as ascertained by a psychiatric specialist, can be recognized as severe patients. Thus, currently in Taiwan, compulsory admission is allowed only when a psychiatric patient is deemed to lack capacity for determining psychiatric care or managing their own

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affairs. Nonetheless, according to Article 42, severe patients admitted involuntarily have the procedural right and capacity to petition to the local court to challenge the review committee’s decision. Taiwan is the first among East Asian countries to adopt compulsory community treatment. According to Article 45 of the Act, compulsory community treatment (including involuntary outpatient and emergent treatment) could be imposed on severe patients who do not comply with psychiatric treatment and thus develop unstable symptoms or deteriorated functions. Once put under compulsory community treatment by the review committee, these patients may be given psychiatric examination or treatment in their  community, such as at their residence, without their consent. By Article 37 of the Act, for the purposes of treatment or preventing emergent incidences of violence, suicide, or self-injury, psychiatric institutions may restrain patients’ bodies or limit their freedom of movement to inside of specific protection facilities without patients’ consent. For the same purposes, mental health care institutions other than psychiatric institutions may restrain patients’ bodies and immediately escort them to receive medical care. Restraint or seclusion is disability neutral, but not impairment neutral; being a severe patient is not a necessary condition for restraint or seclusion since many nonsevere patients also might harm themselves or others.

14.3.4.2 T  he Implication of the CRPD for the Legal Capacity of Persons with Dementia for Psychiatric Measures in Taiwan According to surveys conducted in 2008 by the author of a Taiwan-representative sample (N = 389) and convenience samples of admitted psychiatric patients (in total N = 1131) [34], 52.2% of the public and 60% of the patients agreed that danger to themselves or others could be one criterion for compulsory psychiatric admission. However, 85.1% of the public and 69.5% of the patients also agreed that the inability to care for oneself could be one criterion. The results indicate that the public and the patients were more in favor of the protection-based than the danger-based criterion of compulsory psychiatric admission. In another round of surveys  conducted in 2009 [34], 67.7% of the public (N = 421), 66.2% of the patients (N = 548), 87.4% of the family members (N = 104) and 67.9% of the surveyed healthcare professionals (N = 452) agreed that “protectors” (usually family members designated according to the current Mental Health Act) of severe patients could agree to psychiatric admission on their behalf. Although this kind of practice is not allowed according to the Act, it is not surprising that the legal capacity for refusing psychiatric admission would be denied by the majority of patients themselves, family members, and healthcare professionals in Taiwan’s family-centered culture. In Taiwan, only those mentally ill patients lacking mental capacity can be compulsorily admitted and treated at the same time [35]. In a so-called fusion law approach, there is no need to separate patients’ capacity for psychiatric treatment decisions from other medical treatment decisions [36]. Taiwan does

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not exactly adopt this approach, since as shown above legal capacity for general medical care is considered to be on a different track than that for psychiatric care. When it came into effect in 2007, the current revised Mental Health Act in Taiwan was praised because it covers only those psychiatric patients lacking capacity. The scope of patients qualified for compulsory admission is narrower than before. Adopting a functional approach to legal capacity, it is compatible with the incapacity requirement for compulsion admission as provided by the World Health Organization’s Resource Book on Mental Health, Human Rights and Legislation [19, 35]. As shown above, the definition of “severe patient” is somewhat disability neutral. Likewise, mental disability is not a necessary condition for restraint or seclusion. However, these measures are not impairment neutral. Thus, based on the strong interpretation of Paragraph 9 of the GC No. 1, the main point of criticism against the Taiwan Mental Health Act is that its discrimination based on mental impairment is not permitted by the CRPD. Dementia is officially included as one of the mental illnesses in the Act. If persons with dementia are willing to sign the psychiatric admission consent form, they will be considered to have been admitted voluntarily. In this circumstance, following the sliding scale of the functional approach to legal capacity, no assessment of capacity to consent to the psychiatric admission is performed. When persons with dementia are deemed severe patients, their mental impairment might be due to long-­ term cognitive deficits or acute fluctuation caused by delirium or aggravated psychotic symptoms. Thus, even if deemed severe patients, persons with dementia might not yet be considered persons with mental disabilities based on the criterion of “long-term” in the CRPD’s definition of disability. Based on the Act, persons with dementia may be ordered to receive compulsory admission or community treatment by the review committee once they meet the criteria of these measures. In psychiatric as in nursing home facilities, it is not rare in Taiwan for persons with dementia to be restrained or secluded to avoid danger to themselves or others. In complying with the law, almost all of the facilities adopt practices of mechanical restraint with regular monitoring of vital signs and physical and mental conditions of residents with dementia. Based on Paragraph 9 of the GC No. 1, all of the above stipulations and measures that discriminate against persons with dementia are violations of the CRPD. Psychiatric advance directives are not yet officially recognized in Taiwan’s Mental Health Act. Some psychiatric wards and facilities require patients with dementia or their family members to sign documents to consent to future possible restraint or seclusion. Studies have demonstrated that this kind of practice might reduce the odds of coercive treatment [37]. It is debatable whether this is a practice of advance planning compatible with human rights requirements by the CRPD and the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment [38]. Since a person with dementia always has legal capacity according to the CRPD, the person can overturn the psychiatric advance directive at any time. The advance directive could only be deemed as a tool for supporting but not substituting future self-made choices. Based on the CRPD, unless a person with

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dementia is unable to communicate with others, the hope that the directive can offer a direct solution to the tasks of their future legal lives is unrealistic. It is still a daunting task to establish a timely and efficient support system for all persons with dementia. Furthermore, it is almost a mission impossible to accommodate their will and preferences if these might endanger themselves or others. A more sensible goal is to make incremental changes toward respecting the autonomy and recognizing legal capacity of persons with dementia. A rush to abolish the institution of substitute decision-making may actually create a façade of legal capacity that actually hinders the protection of their other human rights to health and finance, among others.

14.4 T  he Utilization of Neuroscientific Evidence in the Courts in Taiwan to Determine Civil Legal Capacity Currently, dementia encompasses mild neurocognitive disorders (when the independent capacity for “complex instrumental activities of daily living” is still preserved with greater effort or with external support) and major neurocognitive disorders (when no independent capacity for such activities remain). According to Diagnostic and Statistical Manual of Mental Disorders fifth Edition (DSM-5), standardized neurocognitive tests are counted as acceptable evidence for demonstrating cognitive decline [9]. Parallel to the advancement of disability rights discourses, biomedical explorations of the mechanisms of dementia is gaining ground with the help of neurobiological and neuroimaging research. Abundant literature has explored the possibility of utilizing neuroscience to help inform court decisions on legal capacity. This subsection will explore how the courts in Taiwan use neuroscience to address the issue of civil legal capacity of persons with dementia.

14.4.1 Utilization of Neuroscientific Evidence to Determine Civil Legal Capacity of Persons with Dementia People with frontal and temporal atrophy were found to have difficulty understanding or simulating representations of self or of other minds [39]. Furthermore, some persons with behavioral variant frontotemporal dementia can correctly answer questions about moral judgment; sometimes only neuropathological evidence found through neuroimaging can offer an explanation for the impulsivity observed in these persons’ behavior [40]. Regarding financial management capacity, researchers have found that different brain lobes are associated with mental arithmetic, procedural recall, complex operations of numbers, executive functions, etc. [41]. Atrophy of the medial frontal lobe is associated with impaired financial capacity [42]. Persons with mild- to moderatestage dementia were found to have statistically significant deteriorations in the ability to consent to treatment, but supportive measures such as alternative communication methods could enhance their decision-making ability [43].

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To explore public opinion concerning the use of neuroscience in court proceedings, in 2013 the author conducted a public telephone survey of a representative sample (N = 1036) in Taiwan [44]. 57% of respondents supported the use of neuroimaging in determining capacity for agency. However, 90% disagreed that neuroimaging could replace human reasoning in determining capacity for agency. When it comes to guardianship, courts will usually review medical records (containing neuroimaging reports) submitted by petitioners regarding the potential wards with mental impairment. Based on the court case decisions retrieved from the official website of the Judicial Yuan, the highest judicial authority in Taiwan ([45], cases retrieved up to Dec. 31, 2011), across 13,959 civil cases addressing guardianship in 2005–2011, only 18% mentioned neuroimaging evidence. Thus, neuroimaging findings have neither been necessary nor sufficient evidence required for determining civil legal capacity in Taiwan. Even when the neuroimaging evidence was mentioned, the settling reasons did not rely on brain pathology, but rather the integrated behavioral manifestation of impaired mental capacity. For example, in a civil case regarding the legal capacity to make a will (Taiwan High Court, 101 Appeal No. 811), a 93-year-old man making a will was shown to have mild dementia by means of psychological tests and brain atrophy by means of computerized tomography (CT). Having impaired awareness, he was admitted for the treatment of pneumonia on December 13. He was discharged on December 29 and passed away three days later. Since the man incorrectly reported his own birth date when he made the will on December 10, three days before his hospital admission, the court concluded that the will was invalid as a result of the man lacking a clear consciousness when he made the will. The case just described represents the current situation as to the rarity for the courts in Taiwan to determine legal capacity solely based on neuroimaging.

14.4.2 The Implication of the CRPD and Neuroscience for Court Determination of Legal Capacity in Taiwan In the biopsychosocial model adopted by the ICF, neuroscience could very well address the aspects of mental impairment, complementary to a human rights approach that addresses the social and material barriers experienced in dementia. Even as neuroscientific discourse has been gaining traction, the courts in Taiwan have hesitated to rely on neuroimaging to determine legal capacity in civil cases. There is still a prominent gap between theory and practice. Scholars have been utilizing the theory of wide reflective equilibrium to formulate the contents of responsibilities [10, 46]. I have argued elsewhere that the determination of free will and moral responsibility actually is a dynamic and meandering process crossing centuries of humanitarian and scientific discourses [10]. It is a never-ending task to seek coherence among considered moral judgments, moral principles, and relevant scientific and philosophical background theories [10]. However, not every individual or nation achieves the same equilibrium points at the same time. In Taiwan, mental impairment is the necessary condition for determining

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civil legal capacity. However, even the same mental impairment will not be deemed a disability in different fields of law at the same time. Currently, the impact of neuroscientific discourses on the metaphysical foundation of law is yet not fully evident. Zealous advocacy for the convincing power of neuroscience in law is actually perceived as evidence of “brain overclaim syndrome” [47], at least in contemporary Taiwan.

14.5 C  onclusion: Legal Capacity, Neurolaw and the CPRD for the Civil Legal Lives of Persons with Dementia in Taiwan There is still a considerable amount of progress to be made for Taiwan to reach adequate compliance with the CRPD in either legislation or implementation. Though adopting the CRPD as domestic law, Taiwan has failed to create legal capacity institutions compatible with the strong interpretations of Article 12 [17, 48]. The use of neuroscience as evidence to demonstrate the mechanism of cognitive impairment does not necessarily violate the strong interpretations of the CRPD. The focus here is cognitive impairment and mental (psychosocial) disability. Based on these strong interpretations, dementia as a cognitive impairment, like mental disability, is not permitted to be a basis for determining legal capacity. Thus, any measures taking mental impairment (including dementia) as a necessary condition for differentiating treatments would be violating the right to equal recognition before the law and the right to liberty and security of the persons with mental or psychosocial disability. As mentioned earlier in this chapter, persons with dementia are in fact disabled when the government deprives them of their legal capacity for agency in different aspects of their lives. In an ideal world with ideal support, to respect their dignity of risk to engage in venturesome activities [49], persons with dementia must be allowed to make decisions that might harm themselves, others, and/or the public and take responsibility no matter how impaired they were at the material time of their behavior. Although the principle of proportionality is manifested when it comes to acceptable supportive measures according to paragraph 4 of Article 12 of the CRPD, for these scholars holding strong interpretations of the CRPD it seems that the will and preferences of persons with dementia are sovereign to the extent that other rights could be sacrificed for ensuring their equal recognition before the law. Many scholars have criticized that these kinds of interpretations actually violate the protection of these persons’ other human rights [18, 50–52]. It is not even obvious that persons with mental or psychosocial impairments (including dementia) would support this kind of whole-sale, blunt equality. At least according to the above surveys conducted in Taiwan, the majority of respondents agreed with the compulsory psychiatric admission of severely mentally ill patients, regardless of whether it was based on risk of endangerment or need for care. The strong interpretations of the GC No. 1 emphasize respect for the wills and preferences of individual persons with mental disabilities, but at the policy level, it seems that the will and preference of the patient population are de-prioritized. The issue of

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reconciling theory and practice at multiple levels, from individual to social, is an important one to realize human-rights-based legal capacity policy through seeking an overlapping consensus while respecting individual rights, will, and preferences. As regards utilizing neuroscience to help legal capacity determination, abundant literature deals with issues related to neuroscience and the law [53]. If the strong interpretations of Article 12 ultimately prevail, legal capacity can permanently exist for all persons with dementia. In cases where communication with persons with dementia can prove difficult, the use of best interpretation is recommended to detect their wills and preferences. Thus, the relevancy of current abundant literature dealing with neurolaw can only be recognized when it addresses the ability of patients to communicate or to voluntarily express their will and preferences. For example, there is some literature dealing with how to utilize functional magnetic resonance imaging to communicate with persons of disordered consciousness or lock-in syndrome [54, 55]. Issues of mental capacity now turn into those of the ability to communicate, albeit still an issue of mental capacity, and the justified cost to establish a valid and reliable means of communication. However, the robustness of this technology still needs much refinement to make it reliable for court application [56, 57]. In addition, there is a dearth of literature addressing the ways to ascertain will and preferences. There is no consensus in either aspect [52]. Furthermore, how to support persons with dementia to express their voluntary authentic will and preferences without exploitation or coercion is another contested field of scholarship. In Taiwan, there were cases regarding financial decisions by persons with dementia, in which the court considered whether they made decisions under situations of exploitation or coercion. Notably, the courts utilized the concept of mental capacity to deal with issues of vulnerability to exploitation and coercion. In other words, the “spectre” of ability based on neuroscientific evidence is always somewhere in the legal process for courts to count on to reach final decisions about the validity of expressed legal intentions. In the ideal situation, neurolaw has to make neuroscientific connections across mental ability, emotionality and voluntariness. As U.S. Supreme Court Justice Holmes famously said: The life of the law has not been logic. It has been experience […] The substance of law at any given time pretty nearly corresponds, so far as it goes, with what is then understood to be convenient; but its form and machinery, and the degree to which it is able to work out desired results, depend very much upon its past [58].

Although the neuroscientific discourse and CRPD scholarship are fascinating, the chapter’s delineation of these has shown that it does take time and experience to incorporate them into the legal lives of persons with dementia through legislation and practice. It is good to create impetus for positive change, but it is also important to monitor its side effects, such as the risk of human rights discourses in fact enabling human rights violations. Acknowledgement  KCC Wu was supported by the Ministry of Science and Technology (MOST 105-2410-H-002-007-SS3; MOST 108-2321-B-002-002 -).

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References 1. Patterson C. World Alzheimer report 2018: the state of the art of dementia research: new frontiers. London: Alzheimer’s Disease International (ADI); 2018. 2. World Health Organization. Dementia: a public health priority. Geneva: World Health Organization; 2012. 3. Wimo A, Guerchet M, Ali G-C, Wu Y-T, Prina AM, Winblad B, et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2017;13(1):1–7. 4. Wimo A, Jönsson L, Bond J, Prince M, Winblad B, Alzheimer Disease International. The worldwide economic impact of dementia 2010. Alzheimers Dement. 2013;9(1):1–11. e13 5. Taiwan Alzheimer Disease Association. Cognitive dementia [in Chinese]. 2020. URL: http:// www.tada2002.org.tw/About/IsntDementia#bn1. Accessed 6 Sept 2020. 6. Donnelly M. A legal overview. In: Foster C, Herring J, Doron I, editors. The law and ethics of dementia. Oxford: Hart Publishing; 2014. p. 271–82. 7. Beauchamp TL, Childress JF.  Principles of biomedical ethics. 7th ed. New  York: Oxford University Press; 2013. 8. The United Nations. Convention on the rights of persons with disabilities. Treaty Series, 2515. 2006. URL: https://www.un.org/development/desa/disabilities/convention-­on-­the-­rights-­of-­ persons-­with-­disabilities.html. Accessed 28 July 2020. 9. American Psychiatric Association. American Psychiatric Association: diagnostic and statistical manual of mental disorders. 5th ed. Arlington: American Psychiatric Publishing; 2013. 10. Wu KC-C.  Addressing disability in global mental health and neuroethics: challenges and hopes. In: Stein DJ, Singh I, editors. Global mental health and neuroethics. London: Academic Press; 2020. p. 237–62. 11. De Bhailís C, Flynn E.  Recognising legal capacity: commentary and analysis of Article 12 CRPD. Int J Law Cont. 2017;13(1):6–21. 12. Dhanda A. Legal capacity in the disability rights convention: stranglehold of the past or lodestar for the future. Syrac J Int Law Commer. 2006;34:429–62. 13. Flynn E, Arstein-Kerslake A.  The support model of legal capacity: fact, fiction, or fantasy. Berkeley J Int Law. 2014;32(1):124–43. 14. DeMarco JP. Competence and paternalism. Bioethics. 2002;16(3):231–45. 15. Grisso T, Appelbaum PS. Assessing competence to consent to treatment: a guide for physicians and other health professionals. New York: Oxford University Press; 1998. 16. King L, Series H. Assessing capacity. In: Foster C, Herring J, Doron I, editors. The law and ethics of dementia: Bloomsbury Publishing; 2014. p. 283–300. 17. Minkowitz T. Rethinking criminal responsibility from a critical disability perspective: the abolition of insanity/incapacity acquittals and unfitness to plead, and beyond. Griffith Law Rev. 2014;23(3):434–66. 18. Freeman, M. C., Kolappa, K., de Almeida, J. M. C., Kleinman, A., Makhashvili, N., Phakathi, S., … Thornicroft, G. (2015). Reversing hard won victories in the name of human rights: a critique of the General Comment on Article 12 of the UN Convention on the Rights of Persons with Disabilities. Lancet Psychiatry, 2(9), 844–850. 19. Freeman M, Pathare S. WHO resource book on mental health, human rights and legislation. Geneva: World Health Organization; 2005. 20. Flynn E. Legal capacity for people with dementia: a human rights approach. In: Cahill S, editor. Dementia and human rights. Bristol: Policy Press; 2018. p. 157–74. 21. Quinn G. Bringing the UN convention on rights for persons with disabilities to life in Ireland. Br J Learn Disabil. 2009;37(4):245–9. 22. Yang W-P, Chen C-H, Chao C-SC, Lai W-S.  Bioethics education for practicing nurses in Taiwan: Confucian-western clash. Nurs Ethics. 2010;17(4):511–21. 23. Rosen L. Law as culture: an invitation. Princeton: Princeton University Press; 2006.

262

K. C.-C. Wu

24. World Health Organization. Towards a common language for functioning, disability and health: ICF. 2002. Retrieved February, 2019, from https://www.who.int/classifications/icf/icfbeginnersguide.pdf 25. Ministry of Health and Welfare Taiwan. Introduction to the new system of identification [in Chinese]. 2020. URL: https://dep.mohw.gov.tw/DONAHC/cp-­1034-­5208-­104.html. Accessed 15 Mar 2020. 26. Shakespeare T. Disability rights and wrongs revisited. New York: Routledge; 2014. 27. Pozón SR. The convention on the rights of persons with disabilities and mental health law: a critical review. Alternatives. 2016;10(4):301–9. 28. Ministry of Health and Welfare Taiwan. Welfare for the disabled [in Chinese]. 2020. URL: https://dep.mohw.gov.tw/DOS/lp-­2976-­113.html. Accessed 25 Mar 2020. 29. Lee SC. Family consent in medical decision-making in Taiwan: the implications of the new revisions of the Hospice Palliative Care Act. In: Fan R, editor. Family-oriented informed consent. New York: Springer; 2015. p. 125–36. 30. Chen X, Fan R. The family and harmonious medical decision making: cherishing an appropriate Confucian moral balance. J Med Philos. 2010;35(5):573–86. 31. Fan R, Li B. Truth telling in medicine: the Confucian view. J Med Philos. 2004;29(2):179–93. 32. Mei W. Regarding dying, we must plan as early as possible. DNR guarantees the right to the end of life. Only 0.17% signed. [in Chinese]. Health Magazine 41. Web-published Aug 1, 2010. URL: https://www.commonhealth.com.tw/article/article.action?nid=62135. Accessed 15 Mar 2020. 33. Wu KC-C, Tsai F-C. Ethics, law, policy and the implementation of advance medical directives of the terminally ill patients in Taiwan. Taipei: Department of Health, Executie Yuan; 2008. 34. Wu KC-C, Lo C-F, Chen C-F, Chen W-C, Tseng K-C.  Construction of the Mental Health Act Review Committee and the models of compulsory psychiatric admission and compulsory community treatment III. Retrieved from Taipei: Department of Health, Executive Yuan; 2010. 35. Hsiao T-W, Wu KC-C. The Legal criteria and trend of compulsory psychiatric admission: a mini-review and implications Taiwan, Taiwane J Psychiatry. 2017;31(1):38–48. 36. Szmukler G, Daw R, Callard F.  Mental health law and the UN convention on the rights of persons with disabilities. Int J Law Psychiatry. 2014;37(3):245–52. 37. Swanson JW, Swartz MS, Elbogen EB, Van Dorn RA, Wagner HR, Moser LA, et  al. Psychiatric advance directives and reduction of coercive crisis interventions. J Ment Health. 2008;17(3):255–67. 38. Rosenthal E, Ahern L. When treatment is torture: protecting people with disabilities detained in institutions. Hum Rts Brief. 2011;19:13. 39. Adenzato M, Cavallo M, Enrici I. Theory of mind ability in the behavioural variant of frontotemporal dementia: an analysis of the neural, cognitive, and social levels. Neuropsychologia. 2010;48(1):2–12. 40. Manes FF, Torralva T, Roca M, Gleichgerrcht E, Bekinschtein TA, Hodges JR. Frontotemporal dementia presenting as pathological gambling. Nat Rev Neurol. 2010;6(6):347–52. 41. Knight A, Marson D.  The emerging neuroscience of financial capacity. Generations. 2012;36(2):46–52. 42. Stoeckel LE, Stewart CC, Griffith HR, Triebel K, Okonkwo OC, Den Hollander JA, et  al. MRI volume of the medial frontal cortex predicts financial capacity in patients with mild Alzheimer’s disease. Brain Imaging Behav. 2013;7(3):282–92. 43. Moye J, Karel MJ, Gurrera RJ, Azar AR. Neuropsychological predictors of decision-making capacity over 9 months in mild-to-moderate dementia. J Gen Intern Med. 2006;21(1):78–83. 44. Wu KC-C, Lee MS, Chen CF.  Neuroscience and the law: criminal responsibility and civil campetence. Taipei: National Taiwan University College of Medicine; 2014. 45. Judicial Yuan [Constitutional Court of Taiwan]. 2020. [in Chinese]. URL: https://www.judicial.gov.tw/tw/lp-­1820-­1-­xCat-­10.html. Accessed 6 Sept 2020. 46. Dubljević V. The principle of autonomy and behavioural variant frontotemporal dementia. J Bioeth Inq. 2020;17(2):271–82.

14  Legal Capacity in the Civil Legal Lives of Persons with Dementia in Taiwan…

263

47. Morse SJ. Brain overclaim syndrome and criminal responsibility: a diagnostic note. Ohio State J Crim Law. 2005;3(2):397–412. 48. Minkowitz T. CRPD and transformative equality. Int J Law Cont. 2017;13(1):77–86. 49. Bach M, Kerzner L. A new paradigm for protecting autonomy and the right to legal capacity. Prepared for the Law Commission of Ontario. Press release; 2010. 50. Appelbaum PS.  Saving the UN convention on the rights of persons with disabilities-from itself. World Psychiatry. 2019;18(1):1–2. 51. Dawson J.  A realistic approach to assessing mental health laws’ compliance with the UNCRPD. Int J Law Psychiatry. 2015;40:70–9. 52. Szmukler G. “Capacity”, “best interests”, “will and preferences” and the UN convention on the rights of persons with disabilities. World Psychiatry. 2019;18(1):34–41. 53. Morse SJ.  The promise of neuroscience for law: hope or hype? In: Boonin D, editor. The Palgrave handbook of philosophy and public policy. Cham: Palgrave Macmillan; 2018. p. 77–96. 54. Fins JJ, Illes J, Bernat JL, Hirsch J, Laureys S, Murphy E.  Neuroimaging and disorders of consciousness: envisioning an ethical research agenda. Am J Bioeth. 2008;8(9):3–12. 55. Graham M, Weijer C, Cruse D, Fernandez-Espejo D, Gofton T, Gonzalez-Lara LE, et al. An ethics of welfare for patients diagnosed as vegetative with covert awareness. AJOB Neurosci. 2015;6(2):31–41. 56. Comte A, Gabriel D, Pazart L, Magnin E, Cretin E, Haffen E, et  al. On the difficulty to communicate with fMRI-based protocols used to identify covert awareness. Neuroscience. 2015;300:448–59. 57. Fischer D, Truog RD. The problems with fixating on consciousness in disorders of consciousness. AJOB Neurosci. 2017;8(3):135–40. 58. Holmes OW. The common law. New York: Dover Publications; 1991.