Older Women: Current and Future Challenges of Professionals with An Aging Population [1 ed.] 9781681083490, 9781681083506

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Older Women: Current and Future Challenges of Professionals with an Aging Population Editor: Teresa Kilbane 6FKRRORI6RFLDO:RUN /R\ROD8QLYHUVLW\&KLFDJR 1RUWK0LFKLJDQ$YHQXH &KLFDJR,O 86$

& Co-Editor: Marcia Spira School of Social Work Loyola University Chicago 820 North Michigan Avenue Chicago, Il 60611 USA

Older Women: Current and Future Challenges of Professionals with an Aging Population Editors: Teresa Kilbane and Marcia Spira ISBN (eBook): 978-1-68108-349-0 ISBN (Print): 978-1-68108-350-6 ©2016, Bentham eBooks imprint. Published by Bentham Science Publishers – Sharjah, UAE. All Rights Reserved. First published in 2016.

Acknowledgements: Many thanks go to those who contributed and to those who inspired this work in progress. As we age and simultaneously reflect upon the wisdom and courage displayed by our mothers and grandmothers in their own lives, we are in awe. We hope to make use of their lessons as we move through our own aging processes and create a legacy of caring and strength for our daughters, as well as our sons. We also wish to acknowledge the assistance of our graduate assistants, Tracy Swenson, Christine Flynn and Alysha Primmer, for their willingness to participate in the preparation of this manuscript.

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CONTENTS FOREWORD ................................................................................................................................................................ i PREFACE .................................................................................................................................................................... ii ACKNOWLEDGEMENTS ....................................................................................................................................... v LIST OF CONTRIBUTORS .................................................................................................................................... vi CHAPTER 1 GRANDMOTHERS RAISING GRANDCHILDREN: BALANCING BURDENS AND BLESSINGS .............................................................................................................................................................. 3 6DFKD0&RXSHWand4LDQD5&U\HU&RXSHW GRANDPARENT CAREGIVING ..................................................................................................................... 3 Introduction .................................................................................................................................................... 3 Older Grandmothers as Caregivers ................................................................................................................ 6 CAREGIVING IN CONTEXT ........................................................................................................................... 7 How Caregiving Alters Traditional Grandparenthood ................................................................................... 7 Cultural Facets to Grandparent Caregiving .................................................................................................. 11 How Grandmothers Fare Compared to Grandfathers ................................................................................... 13 Reasons, Pathways and Motivations to Care ............................................................................................... 14 A CLOSER LOOK AT THE PHYSICAL, PSYCHOLOGICAL AND SOCIAL IMPACT OF CAREGIVING ......................................................................................................................................... 15 Physical Well-Being ..................................................................................................................................... 16 Psychological Well-Being and Social Support ............................................................................................ 16 Economic Well-Being .................................................................................................................................. 18 Legal Status .................................................................................................................................................. 18 SOCIAL WORK PRACTICE WITH CAREGIVING GRANDMOTHERS ............................................... 20 Supportive Interventions .............................................................................................................................. 20 Practice Implications .................................................................................................................................... 21 POLICY IMPLICATIONS ............................................................................................................................... 22 Child Welfare ............................................................................................................................................... 23 Aging Related Programs .............................................................................................................................. 25 Back-Up Planning ........................................................................................................................................ 25 SUMMARY ......................................................................................................................................................... 26 ONLINE RESOURCES FOR CAREGIVERS AND PRACTITIONERS .................................................... 27 CONFLICT OF INTEREST ............................................................................................................................. 28 ACKNOWLEDGEMENTS ............................................................................................................................... 28 REFERENCES ................................................................................................................................................... 28 CHAPTER 2 CAREGIVING RESPONSIBILITIES OF OLDER WOMEN FOR CHRONICALLY ILL AND DISABLED FAMILY MEMBERS .......................................................................................................................... 32 'HERUDK-0RQDKDQ LITERATURE REVIEW AND DEMOGRAPHICS ...................................................................................... CAREGIVER RESPONSIBILITIES OF OLDER WOMEN ........................................................................ UNMET NEEDS ................................................................................................................................................. INTERVENTIONS/BEST PRACTICES ......................................................................................................... PRACTICE TRENDS/ISSUES ......................................................................................................................... DIVERSITY IMPLICATIONS ........................................................................................................................ POLICY TRENDS AND ISSUES ..................................................................................................................... RESEARCH IMPLICATIONS ........................................................................................................................ CONCLUSIONS AND RECOMMENDATIONS FOR BEST PRACTICES ..............................................

32 35 36 38 40 41 42 42 43

CONFLICT OF INTEREST ............................................................................................................................. 44 ACKNOWLEDGEMENTS ............................................................................................................................... 44 REFERENCES ................................................................................................................................................... 45 CHAPTER 3 OLDER WOMEN AT THE EDGE: ECONOMIC DISPARITIES OF OLDER WOMEN .... 48 &KULVWLQH*HRUJH-XOLH+LOYHUVand6XVDQ*URVVPDQ AGING IS A WOMEN’S ISSUE: THE ECONOMICS OF OLDER WOMEN .......................................... 48 A Profile of Older Women ........................................................................................................................... 49 Race and Ethnicity ....................................................................................................................................... 49 Living Status ................................................................................................................................................ 50 Grand-parenting – Older Adults Raising Children ...................................................................................... 51 Health and Disability .................................................................................................................................... 51 Housing Instability ....................................................................................................................................... 53 The Economic Resources of Older Women ................................................................................................. 53 Poverty ......................................................................................................................................................... 53 Income Distribution ...................................................................................................................................... 54 Sources of Income ........................................................................................................................................ 55 Social Security and SSI ................................................................................................................................ 55 Assets/Savings .............................................................................................................................................. 57 Pensions ........................................................................................................................................................ 59 EMPLOYMENT INCOME .............................................................................................................................. 59 Employment Patterns ................................................................................................................................... 60 Employment Wage Gap ............................................................................................................................... 61 Summary ...................................................................................................................................................... 62 LOOKING BACK: LIFE COURSE PATTERNS THAT CONTRIBUTE TO THE OLDER WOMEN’S ECONOMIC PRECARIOUSNESS .......................................................................................................... 62 The Male Breadwinner Model and Family and Civil Law .......................................................................... 62 Women as Workers ...................................................................................................................................... 62 Women as Caretakers ................................................................................................................................... 63 Women and Unemployment Insurance ........................................................................................................ 63 Women and Social Security ......................................................................................................................... 64 Women and Welfare ..................................................................................................................................... 64 SUMMARY AND RECOMMENDATIONS ................................................................................................... 65 Key Findings ................................................................................................................................................ 65 RECOMMENDATIONS ................................................................................................................................... 66 CONFLICT OF INTEREST ............................................................................................................................. 67 ACKNOWLEDGEMENTS ............................................................................................................................... 67 REFERENCES ................................................................................................................................................... 67 CHAPTER 4 HEALTHCARE DISPARITIES AND OLDER WOMEN .......................................................... 71 -HDQQH(6RNROHF INTRODUCTION .............................................................................................................................................. 71 THEORIES OF “HEALTH” ............................................................................................................................ 73 HEALTHCARE AND OLDER ADULTS ....................................................................................................... 74 SOCIAL DETERMINANTS OF HEALTH .................................................................................................... 75 Differences between Men and Women ........................................................................................................ 75 Differences between Younger and Older Women ....................................................................................... 76 Racial/Ethnic Disparities among the Health Care of Older Women ............................................................ 77 Socio-Cultural Issues .................................................................................................................................... 78 Health Insurance ........................................................................................................................................... 80 Geographic Considerations .......................................................................................................................... 81 PRACTICE IMPLICATIONS FOR ADDRESSING HEALTHCARE DISPARITIES AMONG OLDER WOMEN ..................................................................................................................................................... 82

Changes within the Practice of Medicine ..................................................................................................... Programmatic Changes within Communities and in the Delivery of Healthcare ........................................ Policy Changes that Address Socio-cultural Issues on a Macro Level ........................................................ Social Work’s Involvement in Reducing Healthcare Disparities ................................................................. SUMMARY ......................................................................................................................................................... CONFLICT OF INTEREST ............................................................................................................................. ACKNOWLEDGEMENTS ............................................................................................................................... REFERENCES ...................................................................................................................................................

83 84 85 86 87 87 87 87

CHAPTER 5 WHY DOESN’T ANYONE ASK? MYTHS AND TABOOS ABOUT OLDER WOMEN AND SEXUALITY .............................................................................................................................................................. 90 0DUFLD6SLUD&RQVWDQFH6KHHKDQand$O\VKD3ULPPHU SEXUAL BEHAVIOR IN OLDER WOMEN ................................................................................................. 90 BIOLOGICAL REALITIES ............................................................................................................................. 92 BIOPSYCHOSOCIAL CONSIDERATIONS ................................................................................................. 92 ATTITUDES THAT LIMIT THE CONVERSATION .................................................................................. 94 CASE STUDIES ................................................................................................................................................. 98 IMPLICATIONS FOR PRACTICE AND POLICY .................................................................................... 100 CONFLICT OF INTEREST ........................................................................................................................... 102 ACKNOWLEDGEMENTS ............................................................................................................................. 102 REFERENCES ................................................................................................................................................. 102 CHAPTER 6 SUBSTANCE ABUSE AMONG OLDER WOMEN .................................................................. 105 -RKQ2UZDW$PDQGD%HVLQJHUand(OL]DEHWK0RUJDQ INTRODUCTION ............................................................................................................................................ PREVALENCE OF ALCOHOL AND DRUG ABUSE AMONG OLDER WOMEN .............................. Prevalence: The Big Picture ....................................................................................................................... Prevalence: Alcohol ................................................................................................................................... Prevalence: Prescription Drugs .................................................................................................................. DEFINING SUBSTANCE ABUSE FOR OLDER ADULTS ....................................................................... Substance Abuse Defined: Alcohol ............................................................................................................ Substance Abuse Defined: Illicit Drug and Prescription Drug Abuse ....................................................... RISK FACTORS .............................................................................................................................................. Risk Factors: Physiology and Health ......................................................................................................... Risk Factors: Interactions between Prescription Medications and Alcohol ............................................... Risk Factors: Financial ............................................................................................................................... Risk Factors: Early vs. Late Onset Use ...................................................................................................... Risk Factors: Sexual Orientation ................................................................................................................ Risk Factors: Role Changes, Death and Social Issues ............................................................................... Risk Factors: Dual Diagnosis ..................................................................................................................... SIGNS, SYMPTOMS, AND SCREENING ................................................................................................... Signs and Symptoms .................................................................................................................................. Substance Abuse Assessment ..................................................................................................................... TREATMENT .................................................................................................................................................. Treatment: Admissions .............................................................................................................................. Treatment: Integrated Approach ................................................................................................................ Treatment: Gender Specific ....................................................................................................................... Treatment: Important Considerations ......................................................................................................... Treatment: Ethical Considerations ............................................................................................................. IMPLICATIONS AND FURTHER RESEARCH ........................................................................................ CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

105 107 107 109 110 111 111 112 113 113 114 115 115 116 117 118 119 119 125 125 125 126 127 128 129 129 130 130 130

CHAPTER 7 DEFINING ABUSE IN OLDER WOMEN: VOICES OF THE PROFESSIONALS IN ELDER ABUSE AND DOMESTIC VIOLENCE ............................................................................................................... 136 7HUHVD.LOEDQH INTRODUCTION ............................................................................................................................................ LITERATURE REVIEW ................................................................................................................................ THEORETICAL MODELS ............................................................................................................................ DEFINITIONAL ISSUES ............................................................................................................................... PREVALENCE RATES OF IPV AMONG OLDER ABUSED WOMEN ................................................. COLLABORATION BETWEEN APS AND DVS ....................................................................................... Purpose of Research Study ......................................................................................................................... METHOD .......................................................................................................................................................... SAMPLE ........................................................................................................................................................... Education Level, Training, and Experience ............................................................................................... RESULTS .......................................................................................................................................................... Domestic Violence and Elder Abuse ......................................................................................................... Definition of Domestic Violence by Domestic Violence Workers ............................................................ Definition of Domestic Violence by Elder Abuse Investigators ................................................................ Definition of Elder Abuse by Elder Abuse Investigators ........................................................................... Definition of Elder Abuse by Domestic Violence Workers ....................................................................... Domestic Violence Grown Old and Abuse in Late Life ............................................................................ Domestic Violence Workers’ Views .......................................................................................................... Elder Abuse Investigators’ Views .............................................................................................................. Prevalence of Intimate Partner Violence among Older Women ................................................................ Domestic Violence Workers ...................................................................................................................... Elder Abuse Investigators .......................................................................................................................... Collaboration with Domestic Violence Agencies ...................................................................................... Collaboration with the Department of Aging ............................................................................................. Summary of Findings ................................................................................................................................. DISCUSSION ................................................................................................................................................... RECOMMENDATIONS ................................................................................................................................. Training ...................................................................................................................................................... Establish Collaborative Mechanisms ......................................................................................................... Leadership .................................................................................................................................................. CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

136 137 138 140 143 145 147 147 149 149 150 150 150 151 152 153 156 157 158 160 160 161 161 163 164 165 167 167 169 170 171 171 171

CHAPTER 8 SPIRITUALITY AND OLDER WOMEN: THE JOURNEY HOME TO SELF .................... 174 +ROO\1HOVRQ%HFNHUand0&DUOHDQ*LOEHUW SPIRITUALITY AND OLDER WOMEN: THE JOURNEY HOME TO SELF ...................................... OLDER PEOPLE AND RELIGION .............................................................................................................. GENDER, SPIRITUALITY, AND RELIGION DEMOGRAPHICS ......................................................... RESEARCH ON GENDER, SPIRITUALITY, AND RELIGION .............................................................. SPIRITUALITY AND RELIGION ................................................................................................................ SPIRITUAL STRUGGLE AND SUFFERING ............................................................................................. THEORY AND MODELS ............................................................................................................................... Feminist Theory ......................................................................................................................................... Gerotranscendence ..................................................................................................................................... Narrative Theory ........................................................................................................................................ Spiritual Models ......................................................................................................................................... MODERN WOMEN ON SPIRITUALITY ................................................................................................... Sue’s Story .................................................................................................................................................

174 176 177 177 178 179 180 181 181 182 183 183 184

Joan’s Story ................................................................................................................................................ Mary’s Story ............................................................................................................................................... Arlene’s Story ............................................................................................................................................ Spiritual Stories .......................................................................................................................................... DISCUSSION ................................................................................................................................................... GUIDANCE FOR PROFESSIONALS .......................................................................................................... CONCLUSION ................................................................................................................................................. CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

185 187 188 189 190 191 192 193 193 193

CHAPTER 9 METHODOLOGICAL CHALLENGES IN CONDUCTING SURVEYS WITH MATURE WOMEN .................................................................................................................................................................. 198 'LDQQH5XFLQVNL INTRODUCTION ............................................................................................................................................ TOTAL SURVEY ERROR ............................................................................................................................. Sampling Error ........................................................................................................................................... Coverage Error ........................................................................................................................................... Measurement Error ..................................................................................................................................... Nonresponse Error ...................................................................................................................................... SUMMARY ....................................................................................................................................................... CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

198 199 199 201 203 206 208 209 209 209

CHAPTER 10 THE NEED FOR CONNECTION: THE ROLE OF GROUPS IN THE LIVES OF OLDER WOMEN .................................................................................................................................................................. 211 6KLUOH\56LPRQand0DUFLD6SLUD INTRODUCTION ............................................................................................................................................ 211 SOCIAL RELATIONSHIPS ........................................................................................................................... 213 FACILITATING XONNECTIONS THROUGH GROUPS: EXAMPLES OF COMMON CONTEMPORARY GROUPS FOR OLDER WOMEN ............................................................... 217 CAREGIVING GROUPS ................................................................................................................................ 217 BEREAVEMENT GROUPS ........................................................................................................................... 218 ACTIVITY BASED GROUPS ........................................................................................................................ 219 SPIRITUALLY BASED GROUPS ................................................................................................................. 219 FUTURE CONSIDERATIONS: THE IMPACT OF TECHNOLOGY ..................................................... 220 CONCLUSION ................................................................................................................................................. 221 CONFLICT OF INTEREST ........................................................................................................................... 222 ACKNOWLEDGEMENTS ............................................................................................................................. 222 REFERENCES ................................................................................................................................................. 222 CHAPTER 11 WELL-BEING AND HEALTH CONSIDERATIONS FOR THE AGING LESBIAN COMMUNITY: UNDERSTANDING AGE COHORTS, PARTNERSHIPS, CAREGIVING AND OTHER UNIQUE NEEDS ..................................................................................................................................................... 226 0LFKDHO3'HQWDWR6KHOOH\/&UDLJand/DXUHQ%0F,QUR\ INTRODUCTION ............................................................................................................................................ BACKGROUND ............................................................................................................................................... Population Statistics and Socio-demographic Trends ................................................................................ LIFESPAN DEVELOPMENTAL ISSUES ................................................................................................... Coming Out ................................................................................................................................................ Dating & Partnerships ................................................................................................................................ Sex & Sexuality ..........................................................................................................................................

227 229 229 230 230 231 232

Marriage ..................................................................................................................................................... Parenting ..................................................................................................................................................... Family Structure ......................................................................................................................................... ENTITLEMENTS, POVERTY AND ISOLATIONISM ............................................................................. CAREGIVING ................................................................................................................................................. LOSS, GRIEF AND DEATH .......................................................................................................................... HEALTH & CARE .......................................................................................................................................... MINORITY STRESS THEORY .................................................................................................................... RISK AND PROTECTIVE FACTORS ......................................................................................................... ALCOHOL, SUBSTANCE USE AND ADDICTION ................................................................................... SEXUAL HEALTH .......................................................................................................................................... SEXUALLY TRANSMITTED INFECTIONS ............................................................................................. SERVICE PROVISION .................................................................................................................................. IMPLICATIONS FOR PRACTICE & CONTINUED RESEARCH ......................................................... AFFIRMING MODELS OF CARE ............................................................................................................... CONCLUSION ................................................................................................................................................. CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

233 234 235 236 237 238 238 239 240 241 241 242 243 244 244 246 246 247 247

CHAPTER 12 REDUCING STIGMA OF AGING AND DEMENTIA THROUGH EXPERIENTIAL LEARNING .......................................................................................................................................................... 253 'DUE\0RUKDUGW INTRODUCTION ............................................................................................................................................ SIGNIFICANCE AND BACKGROUND ...................................................................................................... Aging and Dementia ................................................................................................................................... Education and Training in Aging and Dementia ........................................................................................ METHODS ....................................................................................................................................................... RESULTS .......................................................................................................................................................... Theme #1: The Evolving Nature of Beliefs Over Time ............................................................................. Theme #2: Awareness of the Subjective Response of the Person with Dementia ..................................... Theme #3: Curiosity Regarding Dementia Symptoms .............................................................................. Theme #4: The Student’s Understanding of the Family Experience ......................................................... DISCUSSION ................................................................................................................................................... CONCLUSION ................................................................................................................................................. FINANCIAL DISCLOSURE .......................................................................................................................... CONFLICT OF INTEREST ........................................................................................................................... ACKNOWLEDGEMENTS ............................................................................................................................. REFERENCES .................................................................................................................................................

253 254 254 255 256 257 257 258 259 260 262 264 265 265 266 266

SUBJECT INDEX .................................................................................................................................................... 270

i

FOREWORD The statistics are astounding. Between the years 2000 and 2040, the population of older adults in the United States will more than double, to the point that one in five people you see on the street will be older than 65. Over half of those older people will be women. Many of those women will be widows. Many will live alone. Many will be fighting poverty while still more will be providing care for another person while also caring for themselves. In the face of these growing numbers, we cannot afford not to think about aging for the sake of our communities and the sake of our friends, neighbors, family members, and colleagues who will be the 79.7 million older Americans in 2040. The numbers tell both a tale of caution and one of opportunity for women, as you will read in this book. The experience of aging for women can be a time of struggle and challenge – both anticipated and unexpected – especially for those who are not prepared to be older. Today we live in a world where no one teaches us how to age, and women are particularly vulnerable as they face a reality of living longer, potentially alone, with limited resources and a shrinking network of support. But aging does not have to be a time of trauma if we continue to talk and think and plan. It does not have to be a time of stigma if we acknowledge that people are aging all around us, and we are aging with them. Knowing what we know, we are at a pivotal moment right now where we can change the experience of aging for women for the better if we are willing to speak up, and loudly, about what it means to be an aging woman. This book from some of the aging field’s most respected thinkers starts the conversation.

Robyn L. Golden Director of Health and Aging Rush University Medical Center 710 South Paulina Street Suite 422 Chicago, Illinois 60612 USA

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PREFACE It has become common knowledge that the demographic of older adults has shifted. The expectation to live longer is a world-wide phenomenon. Globally, older people represent increasing proportions of the population. The importance of this book rests on the fact that older women, age 65 and up, represent the majority of the older adults in the United States. While men still slightly outnumber women world-wide, women represent a greater percentage of older adults. This will remain true as long as women continue to live longer than men. Currently women are expected to outlive their male counterparts by six years. Longevity clearly brings challenges as well as opportunities. This book is about some of the obstacles that women are likely to face and provides examples of professional interventions that might help them to overcome barriers to achieve a desirable quality of life. There is also an emphasis on the strength and resilience that women display in the face of difficult situations. These strengths are exemplified by the willingness of older women to take on complicated roles as they age. For instance, many older women care for their grandchildren as replacement parents. This role may take a toll on the well-being of grandmothers who suffer health problems and financial difficulties as a result of the added stress. However, these grandparents often take on the primary care of grandchildren, usually in times of crisis, offering the children stability and care. The limitation of their legal rights to make parental decisions often complicates the experience. In the first chapter, Coupet and Cryer-Coupet provide an overview of the benefits and burdens of fulfilling this caretaking role. Monahan reminds us in the second chapter that as women age, they are likely to take on caretaking roles. In fact, women make up the greatest number of caregivers worldwide. It is likely that women will provide care for their spouses or other relatives and the trend is likely to increase as men and women live longer despite chronic illnesses. Monahan describes the trends for women providing care as well as policy and practice implications for clinical social workers and other service providers. While caregiving provides a great benefit to care recipients and often to the caregivers, the role is also associated with higher rates of physical and mental health issues, already inherent in economic and health disparities. The challenges of economic disparities between the genders have existed for decades. However, for older women, concerns about poverty and inequitable access to social security benefits based on fewer years in the work force and lack of employment opportunities are but a few of the issues discussed. George, Hilvers and Grossman examine in the third chapter the various pathways that lead to economic distress for older women, including the potential for homelessness. These factors include single-family head status, reduced labor force participation due to care giving, and low wages and benefits from work due to job segregation

iii

and discrimination. Sokolec continues with the fourth chapter on health disparities among older women. While this is an increasing concern for many within the U.S., it presents a specific challenge to women. Older women are likely to suffer more chronic illness and disability as they age. Many older women live alone without social supports. The discussion of differences between the genders, as well as between older and younger women, highlights some of the difficulties older women face in accessing equitable health care. Access to affordable health insurance is frequently tied to employment and marital status. Since many women are underemployed, preoccupied with caregiving responsibilities or widowed, this puts many older women at a distinct disadvantage. Assumptions are often made about the lives of older women that pose as a disadvantage to their own self-perception. Spira, Sheehan and Primmer, for instance, recognize that the exclusion serves to censor women’s desire to talk about sexuality and increase potential feelings of guilt or shame for having sexual feelings. The expectation that asexuality is normative is challenged in this fifth chapter and replaced with the recognition that continued need for intimacy extends throughout life. Many of these factors combine to increase vulnerabilities and reduce access to needed and effective health services. Orwat, Bessinger and Morgan continue with chapter six on substance use and abuse by women. They depict older women as more vulnerable due to the many disparities articulated in previous chapters. Unique life changes experienced by older women contribute to the difficulty in identification of substance misuse and abuse within this population. Such experiences include loss of loved ones, loneliness, physiological changes, financial stress, pain management, and other co-occurring mental and physical health conditions. Older women are also vulnerable to abuse by others. In chapter seven, Kilbane validates the experience that intimate partners too often continue a pattern of “domestic abuse grown old.” Unfortunately, many cases of abuse are ignored or overlooked. Cases are difficult to substantiate, but perceptions of professionals seem important in the service provided for particular clients. This chapter looks at the how elder abuse investigators and domestic violence workers perceive abuse that has been inflicted upon older abused women clients by an intimate partner. These non-normative events may create an image of older women as being more burdened than benefited by the struggles of their older years. However, as Nelson-Becker and Gilbert state in the eighth chapter which discusses spirituality, mental health professionals need to support the spiritual lives of women as they age. While the search for meaning and spiritual

iv

struggle is viewed as normative, “Aging invites women to come alive in new ways as they honor the journey home to their authentic self, a self that is always larger than what they can dream., ” (Nelson-Becker & Gilbert, p. 1) While many problems and challenges of older women are discussed, anecdotal evidence does not necessarily lead to program development or policy change. Research and interpretation of data collected on the various issues is imperative to create change. However, methodological challenges have been encountered in some of the most common forms of data when researching older women. Rucinski discusses the problems encountered in survey research in chapter nine. While the survey is one of the most widely used tools used to plan, set program agendas and evaluate usefulness or satisfaction; recognition is given to some of the potential errors created by cognitive limitations, proxy reports or other concerns. Caution is offered to make accommodations as necessary to maximize quality and balance accuracy. The final three chapters highlight the positive effects of validating the strengths of older women as they age and navigate issues of loss, and decline. Simon and Spira focus on the powerful positive impact that membership in groups has on older women’s sense of wellbeing in chapter ten. The healing qualities of groups have the potential to mitigate issues of social isolation and loneliness. Women find support, camaraderie and hope through group membership. Dentato, Craig & McInroy remind readers in chapter eleven that the unique experiences of the lesbian community deserve recognition in an exploration of the lives of older women. The women in this community underscore the resilience of aging women, particularly focused on combating discrimination and engaging in activism and advocacy. The final, twelfth chapter of the book reminds readers that older women retain the potential to teach and mentor younger people, even in the face of a progressive illness. Morhardt shares the evaluation of the journals submitted by a young medical student on her experiences of participating in The Buddy Program with a 74 year old woman diagnosed with Alzheimer’s disease. The journals reveal the profound impact of the relationship on helping the medical student recognize the whole person of her mentor, not just symptoms of illness. While present cohorts of women may well continue to suffer from higher rates of disability than their male counterparts, be more likely to live alone, and lack sufficient income and health care supports, more positive self-images and social supports should enable many women to take charge of their lives and improve the quality of their older adult years.

Teresa Kilbane School of Social Work Loyola University Chicago 820 North Michigan Avenue Chicago, Il 60611 USA

v

ACKNOWLEDGEMENTS Many thanks go to those who contributed and to those who inspired this work in progress. As we age and simultaneously reflect upon the wisdom and courage displayed by our mothers and grandmothers in their own lives, we are in awe. We hope to make use of their lessons as we move through our own aging processes and create a legacy of caring and strength for our daughters, as well as our sons. We also wish to acknowledge the assistance of our graduate assistants, Tracy Swenson, Christine Flynn and Alysha Primmer, for their willingness to participate in the preparation of this manuscript.

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List of Contributors Alysha Primmer

School of Social Work, Loyola University Chicago, Chicago, USA

Amanda Besinger

School of Social Work, Loyola University Chicago, Chicago, USA

Carlean Gilbert

School of Social Work, Loyola University Chicago, Chicago, USA

Christine George

Center for Urban Research and Learning, Loyola University Chicago, Chicago, USA

Constance Sheehan

School of Social Work, Loyola University Chicago, Chicago, USA

Darby Morhardt

Cognitive Neurology and Alzheimer's Disease Center, Northwestern University Feinberg School of Medicine, Chicago, USA

Deborah J. Monahan

School of Social Work, Syracuse University, Sims Hall Syracuse, Syracuse, USA

Dianne Rucinski

Abt SRBI Inc., Vice-President, Public Health and Epidemiology, USA

Elizabeth Morgan

School of Social Work, Loyola University Chicago, Chicago, USA

Holly Nelson-Becker

School of Social Work, Loyola University Chicago, Chicago, USA

Jeanne E. Sokolec

School of Social Work, Loyola University Chicago, Chicago, USA

John Orwat

School of Social Work, Loyola University Chicago, Chicago, USA

Julie Hilvers

Policy Research Collaborative, Roosevelt University, Chicago, USA

Lauren B. McInroy

Factor~Inwentash, Faculty of Social Work, University of Toronto, Toronto, Canada

Marcia Spira

School of Social Work, Loyola University Chicago, Chicago, USA

Michael P. Dentato

School of Social Work, Loyola University Chicago, Chicago, USA

Qiana R. Cryer-Coupet

Jane Addams College of Social Work, University of Illinois at Chicago, Chicago, USA

Sacha M. Coupet

School of Law, Loyola University Chicago, Chicago, USA

Shelley L. Craig

Factor~Inwentash, Faculty of Social Work, University of Toronto, Toronto, Canada

Shirley R. Simon

School of Social Work, Loyola University Chicago, Chicago, USA

Susan Grossman

School of Social Work, Loyola University Chicago, Chicago, USA

Teresa Kilbane

School of Social Work, Loyola University Chicago, Chicago, USA

Older Women: Current and Future Challenges, 2016, 3-31

3

CHAPTER 1

Grandmothers Raising Grandchildren: Balancing Burdens and Blessings Sacha M. Coupet1,* and Qiana R. Cryer-Coupet2 1

School of Law, Loyola University Chicago, USA

2

Jane Addams College of Social Work, University of Illinois at Chicago, USA Abstract: This chapter explores the increasing phenomenon of grandparent caregiving and the impact on caregiver health and well-being. This chapter presents demographic data on grandparent caregivers as well as a profile of the unique challenges that they face with the hope of informing readers about how to best serve this particular group of older women. The population of grandparent caregivers is predominately female and, although the majority of grandmothers are not necessarily within the traditional ‘aging’ population, a significant portion of this population is over age 60. This chapter focuses on the ways in which these grandmothers differ from their non-caregiving grandparent peers as well as the unique challenges that they face, including risks to their physical, psychological and social well-being, balanced against the benefits that they describe associated with their caregiving roles. The authors include practice and policy implications for interventions with grandmother caregivers to assist social workers in their work with this population and present case examples with follow up questions to place the issue in context.

Keywords: Grandmothers, Grandparent caregivers, Health and well-being of caregivers. GRANDPARENT CAREGIVING Introduction Grandparent roles, historically as diverse as the population itself, are increasingly Corresponding author Sacha M. Coupet: School of Law, Loyola University Chicago, USA; Tel/Fax: (312) 9157134; E-mail: [email protected].

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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expanding. Although grandmothers and grandfathers have long played a significant role in caring for grandchildren, many are now providing such care for prolonged periods of time, often without the assistance or involvement of biological parents. Grandparents raising grandchildren have become an increasingly visible population over the past decade. Recent data from the American Community Survey (ACS), which is the Census Bureau’s Population Estimates Program, reveals that in 2010 of the 183 million grandparents residing in the United States, there were 7 million grandparents residing with grandchildren [1]. Of this population of co-resident grandparents, 2.7 million were “grandparent caregivers” defined as grandparents with primary responsibility for coresident grandchildren under the age of 18. Put in the context of gender, there are currently 4.5 million grandmothers in the United States, and fully 38% of them (1.7 million) have primary responsibility for grandchildren under the age of 18 [2]. The remaining 1 million are grandfather caregivers. As shown in Fig. (1), far from a shortterm or temporary caregiving arrangement, as might have been the case more often in years past, many grandparents today are assuming caregiving roles for prolonged periods of time. Indeed, according to the same ACS 2010 survey, of the 2.7 million grandparent caregivers, almost 1 million had been providing primary care for the past 5 years or more.

Years Responsible for Grandchildren Less than 1 year 1 or 2 years 3 or 4 years 5 years or more

Fig. (1). American community survey 2010 one year estimates.

According to a 2010 Pew Research Center Report, rates of grandparent caregiving have risen sharply during the past decade, a period that corresponds with the recent economic recession [3]. Indeed, the number of grandparents serving as primary caregivers to their grandchildren rose 8% from 2.4 million in 2000 to 2.6 million in 2008, when the most severe effects of the economic recession began to

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surface. Three percent of that increase occurred from 2000 to 2007, and 5% occurred from 2007 to 2008 [3]. Consistent with this trend, the number of grandparent caregivers continues to rise [4]. It is important to keep in mind when assessing data regarding rates of grandparent caregiving that, outside of census figures, no precise means of assessing the exact total number of grandparent caregivers exists. The inability to accurately measure the phenomenon of grandparent caregiving likely has policy repercussions with rippling effects for individual caregivers. For example, service delivery and resources for grandparent caregivers may be underdeveloped and insufficient in the absence of more accurate figures. Moreover, although current rates of caregiving appear high at 2.7 million, it is fairly likely that the 2010 census figure, like earlier figures, is actually an underestimate of the actual prevalence of grandparent caregiving in the U.S [5, 6] [6]. For several reasons, including loss of senior housing, distrust of social service agencies, fear of reprisals from drug-involved biological parents, or shame and guilt about an adult child’s absence, many grandparent caregivers are reluctant to report themselves as such, which may have the effect of suppressing the perceived prevalence of grandparent caregiving. The grandparent caregiving population about whom the most precise data exist are those grandparents providing formal care to grandchildren who are in the legal custody of the state, specifically those within the child welfare system. Because these children are formally within the child welfare system, we refer to these placements as formal grandparent caregiving households. We know more about the prevalence of such households because states are required to track data pertaining to the care of children in the child welfare system, including whether they are residing and being cared for by a grandparent. The population of formal grandparent caregivers, however, pales in size when compared with those doing so informally, or outside of the supervision or custody of the state. Since informal grandparent caregivers are not connected to or tracked by any formal system, we know far less about their unique challenges and needs. However, it is reasonable to conclude, based on smaller scale studies, that this population bears a strong resemblance to those providing care through formal means. The purpose of this book chapter is to provide information drawn from the larger grandparent caregiving population and apply it to the specific

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circumstances faced by older grandmother caregivers. Older Grandmothers as Caregivers The most recent American Community Survey data on grandparent caregivers confirms 70% of these caregivers are married and that grandparent caregivers are overwhelmingly, although by no means exclusively, women [7]. Smaller scale studies conducted with this population further support that grandparent caregivers are typically grandmothers and far less likely to be grandfathers [8, 9]. Consistent with these smaller scale studies, census figures place the number of grandfather caregivers at 1 million compared with 1.7 million grandmother caregivers [2]. With respect to the prevalence of grandmothers among the broader cast of relative caregivers-known collectively as kinship caregivers-early research indicates that the majority of kinship caregivers are maternal grandmothers (47%) and aunts (29%) with a 24% other category, including cousins, grandfathers, and “fictive” kin, or non-blood relations, such as pastors, godparents, or close family friends [7]. The central role occupied by grandmothers in this context is entirely consistent with general caregiving roles occupied by women who typically assume primary roles in ‘kinkeeping’ and caring for other family members [10]. Indeed, the majority of family caregivers are female with a prevalence estimated to be two-thirds [11]. As shown in Fig. (2), grandmother caregivers, like grandmothers as a whole, range widely in age and the most recent census data reveals that slightly over two thirds are under the age of 60. In addition, as shown in Fig. (3), the ratio of older to younger grandparent caregivers holds fairly consistently across racial groups with the greatest actual number of older grandparent caregivers – defined as those 60 years and over-observed among White Non-Hispanics. However, since most grandparent caregivers have been, or will be, providing care for a period of 5 years or more, it is likely that many younger grandparents will enter into their older years as primary caregivers for their grandchildren. As will be explained later in this chapter, grandparent caregiving is precipitated by a number of factors, including parental abuse or neglect, incarceration, substance abuse, death, or abandonment by a biological parent. In addition,

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grandmothers raising grandchildren are either taking on this role as part of a formal caregiving arrangement initiated through state involvement, principally, child welfare, or as a private caregiving arrangement facilitated by family members, commonly known as informal caregiving [7]. Each of these routes to caregiving is associated with particular challenges for grandmother caregivers, many of which are further explored in this chapter.

Age of Grandmother Caregivers

60 years and over 31%

30 to 59 years 69%

Fig. (2). Grandmother caregiver by Age-American community survey 2010 one year estimates.

CAREGIVING IN CONTEXT How Caregiving Alters Traditional Grandparenthood Grandparenthood, as a broadly defined status and role, is not marked by a particular age, but rather by a life course transition that can span a wide range of ages. While there are many similarities between grandparent caregivers and their non-caregiving peers, these groups differ along many dimensions that define this role, most notably in terms of contact and involvement with grandchildren. A 2002 Grandparent Study conducted by the AARP reported that the majority of grandparents occupied a supportive role with respect to their grandchildren, with most of them (68%) seeing grandchildren every one or two weeks and 24%

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reporting that they saw grandchildren once a month to once every couple of months [12]. Only a small portion of the grandparents surveyed, (6%) reported that they had grandchildren living with them. In 43% of those homes in which a grandparent and grandchild resided together, there was no parent present, with primary caregiving responsibility assumed by a co-resident grandparent [12]. 1600000 1400000 1200000 1000000 800000 600000 400000 200000 0 60 yrs and older 30 to 59 yrs old

Fig. (3). Grandparent caregiver race by Age-American community survey 2010 one year estimates.

As noted above, grandparenthood as a life course transition has been described as a role assignment or social position, rather than a role assumed when one reaches a specific age or stage of development. According to grandparent researchers, “ as adults approach the end of middle-age, a process of disengagement from work and extra-familial roles occurs, making intra-familial roles such as grandparenthood relatively more important, and one of the few sources of ascribed status. (emphasis ours)” [13]. Even working middle-aged adults consider grandparenthood to be among their most important roles [9]. Although grandparenthood is typically associated with a range of symbolic meanings, “ early studies indicate that grandparents view the role as a source of status or emotional fulfillment, unencumbered with responsibilities” [13]. Such is not the case with grandparent

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caregivers who, by virtue of their role, assume substantial responsibilities and also differ from their non-caregiving peers along other dimensions-including grandparent attitude and expectations, grandparent behaviors, the symbolic meaning of grandparenthood, and grandparent satisfaction. The degree of inherent ambiguity in the grandparent role itself further complicates matters for caregiving grandparents, as “unlike work and parental roles, the grandparent role lacks explicit functions or clear rights and responsibilities” [13]. The role is also a highly contingent one, as grandparents generally have no control over either the timing or other critical aspects of the nature of grandparenting [13]. The lack of control is particularly acute for grandparent caregivers who typically assume their roles without planning or preparation and, unlike their noncaregiving peers, are more limited in the range of grandparental behaviors in which they engage and grandparenting styles which they adopt, due to competing and primary caregiving demands. Often these competing demands so drastically alter the grandparenting context that comparisons to traditional grandparents become strained. Due to the nature of the caregiving role and its attendant demands-including significant accommodations of time, work and financial resources that must now address the needs of minor dependents-grandparents raising grandchildren may share more in common with older parents raising children than they may share with their grandparent peers who are not also fulltime caregivers. How caregiving grandparents cope with the departure from a traditional grandparent role is related, in part, to “their constitutional traits, their life circumstances, the time and effort they must spend in the caretaking process, what kind of support they have, and the levels of responsibility and authority they exercise” [14]. Not surprisingly, assumption of the caregiving role results in many mixed feelings for caregiving grandparents who, unlike their non-caregiving peers, are often dealing with an added role ambivalence. These grandparents are inevitably caught between two polarities-the desire to meet the needs of their adult children and grandchildren on the one hand, juxtaposed with their own reluctance to take on a parental role again, with all of the attendant challenges and demands and, often, deferred dreams of retirement.

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With respect to role satisfaction, caregiving grandparents have been found to have lower levels of “psychosocial satisfaction” compared with non-caregiving grandparents, something researchers attribute to “greater levels of parental-like responsibilities such grandparents assume” [15]. Although many caregiving grandparents report a host of benefits related to their caregiving role, research with non-caregiving grandparents reveals that satisfaction with the role comes because non-caregiving grandparents enjoy “all the joys of parenthood, without the associated responsibilities” [9]. Compared with non-caregiving grandmothers, caregiving grandmothers have reported less support and reward, more strain, depressive symptoms, and concerns about family and family functioning [15]. Although the caregiving role is dynamic and influenced by circumstances that might unfold over time, it is important to note that many of the negative outcomes for caregiving grandparents do not appear to vary much over time. Researchers who conducted a small scale longitudinal study reported that grandparents raising grandchildren reported more role strain, negative affect, and life disruption than non-caregiving grandparents even 6 months following assumption of this role [15]. Similarly, in a longitudinal study across 24 months, researchers found that caregiving grandmothers reported more stress, intrafamily strain, perceived problems in family functioning, more physical health problems and more depressive symptoms than non-caregiving grandmothers, and that transitions to higher levels of caregiving were associated with worsening physical health and increases in stress, intrafamily strain and perceived problems in family functioning [16]. Throughout this chapter, the authors have presented three case examples to help social workers better understand the challenges and needs of grandparent caregivers. The narratives and questions draw directly from the material that precedes the case examples and are intended to prompt reflection and dialogue. In addition to the material presented in the chapter, readers are invited to refer to the online resources for grandparent caregivers and social workers included at the end of this chapter. Case Example 1.0 Sheila, is a 59 year old single woman. She has four children and six grandchildren, some of whom she assists in caring for on an occasional basis when their parents must

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work late or go out of town. Sheila is a diabetic and has recently begun to experience negative side effects from the illness, most frequently in the form of vision impairment. Having worked as an administrative assistant at a local college for the past 26 years, Sheila was looking forward to retirement. However, those plans were put on hold when her 30 year old daughter was arrested five months ago and Sheila was the only relative willing to take custody of her three children, ages 9, 5 and 3. Without hesitation, Sheila agreed to take the children into her home when asked by the child protection worker who called shortly after her daughter’s arrest. She said she agreed because she could not fathom the idea of them going into foster care, which the child protective services worker said would not happen if Sheila stepped in to assume care. Sheila’s daughter has subsequently been convicted and sentenced to a six year prison term. Since receiving her grandchildren into her home, Sheila has experienced difficulty getting the children enrolled in her neighborhood school, accessing financial resources to help care for them, and finding time to address her own health concerns. Unfortunately, Sheila’s story is not an unusual one. Reflection Questions: 1.1 What kind of kinship care-formal or informal-is Sheila engaged in? How might her experience as a kinship caregiver differ with each kind of care? 1.2 In what ways does Sheila’s role as a grandmother caregiver differ from the traditional role of a grandmother?

Cultural Facets to Grandparent Caregiving While grandparents have historically played an important role in the lives of their families, the heightened role of grandparents as primary caregivers began to surface in the 1980’s when overall rates of parental substance abuse increased in the United States. As parents of all racial and ethnic backgrounds increasingly found themselves incapable of properly caring for their children, relatives, especially grandmothers, emerged in many cases as natural substitutes for absent parents. Although once solely regarded as the direct result of the crack cocaine epidemic grandmothers report that pathways to care are often complex and differ based on family situations [17]. When many people picture a grandmother they often do not think of a woman

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who is charged with the primary responsibility of rearing her grandchildren. However, in some communities grandmothers have historically assisted with parenting in order to relieve familial burdens and the caregiving role is more normative than in other communities. As the incidence of grandmothers raising grandchildren continues to rise throughout the nation, it’s important to note the cultural differences among this population. Taking on this role has been particularly characteristic among African American grandmothers, who have been noted to do so dating back to slavery [18]. According to data from the 2000 census as shown in Fig. (4), African American grandparents (4.3%) were more likely to be custodial grandparents, followed by Latinos (2.9%) and Whites (1.0%). However, data from the American Community Survey 2011 one year estimates suggest a change in these trends, with the largest percent change among White custodial grandparents [4]. 6

5

4 African American White

3

Latino 2

1

0 2000

2010

Fig. (4). Percent custodial grandparents by race based on US census 2000 and 2010.

Among African American families, patterns of extended kinship care have been evident across generations. Often charged with the responsibility of caring for relative children while parents worked or, in some cases, were sold away, African American families have been familiar with this familial pattern for decades. As a

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result, African American grandmothers are disproportionately more likely than grandmothers from other racial groups to have primary responsibility for their grandchildren, and to know of people who are doing the same [19, 20]. According to research, historically, Latino families prefer to live closer to family members than any other racial group. Known to unify and strengthen family bonds, this closeness in proximity is attributed to Latino family’s desire to care for family before self. As a result, Latina grandmothers often expect to have a role in the rearing of their grandchildren. While co-parenting is the most tradition form of grandmother caregiving among Latino families, increasing familial instability has led to more grandmothers taking over as primary caregivers. Traditionally research has suggested that White grandmothers are more likely to be “remote caregivers.’ Often participating in “recreational and companionable activities”, they are less likely to have primary responsibility for their grandchildren. However, since the 1940’s we have witnessed an increase in the rate of white grandmothers assuming the role of primary caregivers. Research suggests that any observed differences in the grandmother role between white grandmothers and minority grandmothers might be attributable to low incidences of familial instability and greater access to supportive resources [21, 22]. How Grandmothers Fare Compared to Grandfathers Historically, social work texts have not considered the roles of fathers in traditional nor non-traditional families. Consequently, there are not many studies that explore the roles or experiences of grandfathers. Studies comparing the experience of men and women in traditional grandparenting roles have failed to find any“ clear gender differences in grandparent satisfaction.” Hayslip et al’s early comparison of custodial and non-custodial grandparents found no main effect for gender, but did find that grandmothers’ psychosocial satisfaction was not as adversely affected by being a custodial grandparent as grandfathers [23]. More recently, Kolomer & McCallon found that although there was no statistically significant difference between caregiving grandmothers and grandfathers on caregiving mastery, grandmother caregivers experienced higher levels of depressive symptoms than grandfathers [24]. It is as yet unknown

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precisely what factors may protect grandfather caregivers and to what degree the impact of caregiving is influenced by gender roles and expectations. More work in developing a broader profile of grandparent caregivers and a better understanding of the influence of gender is certainly warranted. Reasons, Pathways and Motivations to Care Whether they are formally or informally caring for a grandchild, recent studies suggest that grandmothers become caregivers as a result of a variety of situations, mostly crisis-driven. As noted earlier, the assumption of a caregiving role occurs when parents are unable to properly care for their children under circumstances which can include, but are not limited to, child abuse and/or neglect, parental incarceration, the death of one or both parents, parental substance abuse, familial financial strain, and physical health or mental health concerns. When asked what pathways lead to care, some caregivers report that they stepped in to care for their grandchildren because they understood the risk of not doing so, such as the children being removed from their parent’s home and entering foster care. Others were asked by the child’s parents to take on the role of primary caregiver because the parent could not do so due to illness, lack of employment, or involvement with the criminal justice system. In some cases, it’s been reported that the child asked the grandmother to intervene on their behalf. And in many cases, the child welfare system intervened and identified the grandmother as a potential caregiver, which may result in the grandparent caregiver assuming the role either formally, akin to a foster parent, or informally, as a means of diverting children from entering foster care. Caregivers’ motivations for taking on this role are, as earlier noted, influenced by role ambivalence and conflict and vary from feelings of familial obligation, moral duty, or simply love [17]. Case Example 2.0 Betty is a 60 year old married woman who has worked for the past 25 years in real estate. Her husband, Ben, 64, is a well-paid executive for a large auto manufacturing company. Betty and Ben have one daughter, Cherise, 34, and two grandchildren, Tim, 8, and Tina, 7. Betty and Ben are close to retirement and have made plans to both travel extensively upon retirement and eventually resettle out of state to live closer to Betty’s

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extended family. One day, Betty and Ben received a call that their daughter Cherise had been killed in a car accident. Cherise’s children have no relationship with their father, whom they have not seen since Tina’s birth 7 years ago. Betty and Ben do not hesitate to open their home to Tim and Tina and successfully petition to become legal guardians of their grandchildren, whom they plan to later adopt. The weeks following the arrival of the children into their home have been particularly challenging for everyone. Tim, who had few, if any, behavioral problems prior to his mother’s death, is having difficulty with anger issues in school and at home. Tina too seems withdrawn and depressed. Betty and Ben are exploring counseling for their grandchildren and for themselves as well. Reflection Questions: 2.1 Think about the relationship between Betty and Ben’s pathway to caregiving and their motivation to take on this role. How might Betty and Ben’s pathway to caregiving influence their experience as caregivers? 2.2 How might Betty’s experience as a grandmother caregiver differ from that of our first case example involving grandmother caregiver, Sheila? What are some differences in both their pathways to caregiving and the challenges they face as caregivers?

A CLOSER LOOK AT THE PHYSICAL, PSYCHOLOGICAL AND SOCIAL IMPACT OF CAREGIVING According to researchers there are several factors that influence the ways in which custodial grandmothers are impacted by the caregiving role [25]. These include the availability of family resources, social support, and pre-existing health and/or mental health concerns. Research suggests that the average age of these grandmothers is 55-57, with a range in age for the majority of grandmothers being between 30 and 59 years [25]. Given the age range of this population, it is important to understand the impact that caregiving has on their mental and physical health, as well as their social lives. While many of their non-caregiving grandparent peers may be preparing for a life of retirement and time spent relaxing, these grandmothers are often reliving the days of their youth with time spent changing diapers, checking homework, and making visits to the pediatrician. As expected among aging populations, these activities can have a negative impact on various aspects of the caregiver’s life, including their physical

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and psychological health. Grandmothers who have assumed full-time caregiving roles often do so under adverse circumstances that either exacerbate existing health problems or contribute to poor health outcomes. “Indeed, there is ample evidence to support the fact that the demands of caregiving are associated with deleterious physical and mental health-related consequences for such persons.” [26]. Physical Well-Being Several studies of caregiving grandparents indicate that they are at increased risk for physical health problems, with some health challenges significant enough to jeopardize their ability to provide ongoing care. Compared to their non-caregiving peers, caregiving grandmothers are more likely to report their health as very poor to fair [27] and to report greater limitations in performing daily activities of living [28]. Recent census data reveals that over 700,000 grandparents with primary responsibility for their grandchildren report having a disability [1]. Common health complaints reported by grandparent caregivers include “arthritis, hypertension, insomnia, pain, stiffness, headaches and hearing problems,” ailments which grandparents often deny for fear of having the caregiving relationship disrupted [14]. The negative impacts are often further compounded among low-income African American grandmothers, who may already be at risk based on pre-existing environmental factors [25]. Psychological Well-Being and Social Support Research suggests that grandmother caregivers who report having fewer material and financial resources, low social support and poor physical health, also report experiencing greater psychological distress and compromised psychological wellbeing. However, the impact of grandmother caregiving on caregiver psychosocial well-being appears influenced by race and ethnicity. For example, women with a grandchild in the home either continuously or intermittently were more likely to have elevated depressive symptoms than those without coresident grandchildren. However, for women of color, if a grandchild and an adult child (not necessarily the parent) were in the home, grandmothers reported fewer depressive symptoms than white caregivers [29]. Similarly, Pruchno [20] (1999) found that African

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American women raising grandchildren report less burden and negative affect than their White peers, whereas Latina grandmothers reported greater well-being in multigenerational families [21, 29]. Not surprisingly, psychological and physiological distress among grandmother caregivers has implications for children’s well-being, as studies demonstrate that “when custodial grandparents feel depressed and burdened, their interactions with grandchildren are negatively affected” [30]. As such, children in the care of grandmother caregivers may display increased levels of internalizing and externalizing behaviors in response to several environmental factors, including the parenting stress experienced by their caregiver. In a study of informal caregiversthose raising relative children without oversight from the child welfare systemresearchers found that higher levels of externalizing behavior problems and greater family dysfunction were associated with higher parenting stress. However, these caregivers reported lower levels of parenting stress as their perceived levels of family resources increased. Although some grandmother caregivers are hesitant to seek services provided by social service agencies, research suggests that the receipt of such services helps to buffer the negative physical and psychological impacts of caregiving [31]. Alternatively, many grandmother caregivers rely on informal sources of social support from relatives, close friends, and community members. Those who rely on these informal networks for assistance often report higher levels of life satisfaction and lower levels of caregiving stress [31]. The relationship between informal social support and caregiver wellbeing is very evident among caregivers who are married, as research reports lower levels of parenting stress among this group [32]. Studies have attributed some of this parenting stress to the relationships grandmother caregivers have with the biological parents of the children in their care; noting that some biological parents are a source of stress and anxiety rather than a help to the caregiver [32]. Researchers suggest that improved relationship quality between custodial grandmothers and children’s parents may increase positive birth parent involvement and increase the caregiver’s perceived level of support [33]. Whether the caregiver is the maternal or paternal grandmother of the child in care has not proven to significantly impact the burden experienced by the caregiver.

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Economic Well-Being The burden of raising grandchildren is often negatively impacted by the experience of financial strain. Some caregivers report having difficultly remaining in the workforce and maintaining adequate housing and material resources due to the demands and life changes caused by raising a relative’s child. Researchers suggest that 57% of grandmothers raising grandchildren live in poverty [34]. Gleeson et al. (2008) [32] found that 62% of informal kinship caregivers were unemployed and 71% of these families reported household incomes of less than $20,000 per year. Some custodial grandmothers rely on economic support from formal welfare systems and Supplemental Security Income [35]. Although many custodial caregivers are eligible for Temporary Assistance to Needy Families (TANF) cash benefits, they do not fully utilize these resources because they are often subject to the same work requirements as other families living in poverty. Meeting these work requirements may be difficult for grandmothers who are suffering from physical ailments, or have retired and have difficulty reentering the workforce [36]. TANF Child Only grants are available to kinship caregivers for the sole purpose of supporting the children in their care. However, researchers report that many custodial caregivers do not access or utilize this modest benefit [37]. Legal Status Grandmother caregivers’ well-being is also impacted by the ambiguity of their legal status vis-à-vis the children in their care. Indeed, many grandmother caregivers are unaware of their legal status and the scope of their authority under the law. Very often, because they have assumed parental caregiving responsibilities(which typically means that they have assumed physical custody of the child and are providing day-to-day care), they may regard themselves as substitute parents of sorts, with a correspondingly broad scope of parent-like authority. However, without taking some legal action to establish their caregiving status, or taking legal custody in addition to physical custody, they are effectively legal strangers in the eyes of the law. Because the custodial rights and decisionmaking authority of grandmother caregivers is keyed to their specific legal status, their lack of clarity about their status can leave them uncertain about both their

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ability to make meaningful choices as caregivers and the security of their caregiving arrangement. Decision making in such areas as enrollment in school or daycare, consenting to medical treatment, obtaining health insurance coverage, accessing social services, obtaining government assistance, and preventing the child from being taken, are all effected by the kind of legal custodial arrangement in place. The range of custodial rights for grandmother caregivers spans a wide spectrum from no legal arrangement at all, which offers effectively no protection for the grandmother caregiver or the caregiver-child relationship, to adoption, which formally recasts the grandmother-grandchild relationship into one of parent and child, thus providing robust protection of the kind granted to legal parents. Many grandmother caregivers elect to rely on a power of attorney when they assume a caregiving function for their grandchildren, since it is a document that is particularly easy to obtain and often only requires notarization and no court appearance. Under a power of attorney, a grandmother caregiver is authorized by a legal parent to act in his or her place as it concerns most caretaking decisions related to the child. However, that authority can be unilaterally terminated at any time by the legal parent without having to appear in court. Each state has rules that specify how a power of attorney must be prepared and executed in order to be valid. Farther along the spectrum in terms of protections for grandmother caregivers are guardianship arrangements that delegate a substantial portion of parental authority to a court appointed guardian. More formal in structure and comprehensive in scope than powers of attorney, minor guardianships remain under court supervision generally until a child reaches age 18 or the guardianship is terminated. Guardianships are particularly appealing for grandmother caregivers since legal parental rights of an adult son or daughter would not have to first be terminated in order for a guardian to be appointed. State laws provide for a range of guardianship possibilities that differ in terms of duration (temporary or permanent) and procedures (in or out of court) required to establish them. With respect to guardianships established through the court, guardians can be appointed with or without the consent of a parent should the court find that the parent’s whereabouts are unknown or that the parent is unable or unwilling to carry out

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day-to-day child care decisions. The kinds of legal issues that are raised in guardianship cases, although they often resemble those raised in cases of abuse and neglect, are typically heard in probate court. Finally, at the farthest end of the spectrum referenced above is formal adoption, which is the process by which grandmother caregivers become legal parents. Because formal adoption requires that the original parent-child relationship first be terminated – either voluntarily or involuntarily-it is often regarded by grandparents as the least preferable option. In large part this is because adoption pits grandparents against their own adult children in a contest for legal parental rights. Formal adoption effectively strips the original legal parent of all of the rights typically attendant with parental status and awards those to the new legal parent, the grandparent caregiver. Even if the adoption is only being pursued by a grandmother caregiver, the rights of both mother and father will first need to be terminated. SOCIAL WORK PRACTICE WITH CAREGIVING GRANDMOTHERS Supportive Interventions Although some grandmother caregivers do not seek formal monetary assistance to help meet the needs of their families, many seek formal and informal support from social service agencies that employ social workers. Those who are trained as social workers are uniquely qualified to help meet the needs of grandmother caregivers because their interventions are targeted to address the social, environmental, and economic factors which may cause caregiving related challenges. The goals of these interventions are to enhance the wellbeing of custodial grandmothers and the children in their care. Recognizing the unique needs of this group of women and children, practitioners have developed several interventions that have been empirically tested and found to improve mental health outcomes and engagement with formal support systems [38, 39]. Such interventions have been in the form of psycho-educational groups, support groups, case management programs and empowerment training courses [38 - 40]. Highlighting the importance of religion in the lives of many custodial grandmothers, several of these targeted interventions have had spiritual components. The groups

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often take place at schools, churches, and local community centers. In order to help practitioners address the needs of the caregivers using an empowerment approach [40]. Social Work researchers have developed a training manual for those interested in developing a support group for grandparents raising grandchildren. The groups have as an objective the strengthening of parenting skills of grandparents as well as the increase in their effectiveness in the community as advocates for themselves and other caregiving grandparents [40, 41]. Some of the topics explored by social workers and caregiving grandmothers in these groups include: ● ● ● ● ● ● ● ● ●

Obtaining Housing and Financial Resources Helping Children Build Self Esteem Effectively Communicating with Children Dealing with Behavior Problems Talking with Grandchildren about Sex and HIV Talking with Grandchildren about Drugs and Alcohol Dealing with the Loss of an Adult Child Dealing with a Child’s Grief and Loss Coparenting: Understanding the Roles of Birth Parents

Practice Implications As discussed throughout this chapter, there are several challenges and rewards experienced by grandmothers who provide primary care for their grandchildren. Given the complex nature of parenting grandchildren, caregiving grandmothers often require informal assistance from family, friends, and community members. Additional formal support from individuals such as social workers has also proven to be beneficial. In order to best meet the physical, psychological, and economic needs of caregiving grandmothers and the children in their care, social workers must be trained to understand the dynamics of intersecting service systems (i.e. Education, Healthcare, Housing, and Child Welfare) and how to best navigate these systems to assist clients in enhancing their overall wellbeing. While these skills are often taught within the foundation and concentration (Children and Families) social work curricula, schools of social work are beginning to offer concentration level courses that solely address the unique needs of kinship

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caregivers and their families. Similar course work is also being infused in agingrelated courses offered to bachelor level social work students [42]. As the incidence of grandmother caregiving continues to rise, it is important for social workers to understand best practices with intergenerational families in order to be prepared to effectively address the needs of the kinship care triad (caregivers, birth parents, and children). Case Example 3.0 Cassandra is a Licensed Clinical Social Worker at a local elementary school. In this role she maintains an active caseload and provides supervision to masters level social work field students. Over the past two school years, Cassandra has noticed an increase in the number of grandmothers with primary caregiving responsibility for their grandchildren. Cassandra has asked the current social work field students to prepare a needs assessment based on the incidence of grandparent caregiving within the school and surrounding community. To help the students start their research, Cassandra has suggested that they interview families on their caseload and contact representatives from the local Department of Public Health, Department of Children and Families Services, Department on Aging, Department of Housing, and the Department of Education. Reflection Questions: 3.1 What information might the students try to ascertain from each of the stakeholders? 3.2 In what ways might this information assist the students when they work with caregiving grandmothers and their families?

POLICY IMPLICATIONS From a policy perspective, grandparent caregiving sits at the crossroads of a number of pressing public concerns, with consequently overlapping constituencies. The issue of grandmother caregiving implicates the economic, legal and social interests of four principal constituency groups: (1) women, (2) minorities or persons of color, (3) aging populations, and (4) those raising children involved in the child welfare system. This is the case even though some grandmother caregivers–particularly younger, non-minority grandmothers who

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are providing care through private arrangements-may fit into only one of these four possible different constituencies. The overlap creates opportunities for advocates to draw from a number of different support services, while also creating sharp disparities in the level and kind of services available to all grandmother caregivers. As individual constituencies continue to advocate for grandmother caregivers within their ambit, we continue to see a “silo effect” as it relates to policies impacting all grandmother caregivers. Not surprisingly, policies that address the needs and interests of grandmother caregivers within one silo sometimes fail to inure to the benefit of grandmother caregivers whose struggles may be identical, but whose life circumstances place them in another constituency group. Two examples where distinct services and resources have been made available to grandmother caregivers are in the case of grandmothers raising grandchildren under the supervision of the state child welfare system within foster care and those grandmother caregivers who, by virtue of their advanced age, are able to benefit from programs and services for the elderly. Child Welfare As noted earlier, relative to the entire population of grandparent or grandmother caregivers, only a fraction of them are raising children under the auspices of the formal child welfare system. Although they represent a fairly small fraction of the overall population of grandparent caregivers, those in the child welfare system tend to be the subject and source of a disproportionate degree of policy debate and advocacy attention, as they are the most “visible” of the grandparent caregiving population. Their numbers are easier to ascertain in light of the federal oversight of state child welfare systems that mandate the collection of such data. The reason for such oversight is that, unlike caregiving in an informal or private context, the caregiving services they provide are connected to the Title IV-E eligibility of the children in their care. Title IV-E of the Social Security Act determines eligibility for foster care and subsidized adoption benefits through Foster Care and Adoption Assistance programs for certain children who receive foster care services or subsidized adoption and establishes requirements for the states to follow in the administration and operation of such programs in order to receive federal support. Title IV-E eligibility requirements include, but are not limited to, the following: the child is removed pursuant to a voluntary placement agreement or a legal

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finding that remaining in the home is contrary to the child’s welfare and all AFDC relatedness criteria are met (citizenship, removal from specified relative, deprivation, etc.). The issue of Title IV-E eligibility has shaped federal legislation affecting grandparent caregivers in the public context, most recently, under the 2008 Fostering Connections to Success and Increasing Adoptions Act. This federal legislation included, among other provisions, a state option for federal reimbursement under Title IV-E for guardianship assistance payments. Under this option, only grandparents (and other relative caregivers) who have assumed custody of grandchildren through formal foster care placement and court adjudication are eligible for the federal financial subsidies. State and county subsidies may, however, be available in several of the thirty states that have, as of 2012, applied and received approval for their state Title IV-E plan amendment concerning kinship guardianship subsidies. Recognizing the common concerns of all grandparent caregivers, both inside and outside of the formal foster care system, the 2008 Fostering Connections Act did provide for several cost neutral provisions, not tied to Title IV-E criteria, all of which are, therefore, available to a much broader population of grandparent caregivers beyond those within the child welfare system. These provisions include requirements for states to provide relatives with notice of the placement of a related child in foster care, something which is believed to increase opportunities for grandparent caregivers to step in when children are removed from their parents and placed in foster care. In addition, the Act provides for codification of existing federal guidance permitting flexibility in foster care licensing for relatives, which, by waiving non-safety related licensing standards, may increase the percentage of grandparent caregivers who are licensed to provide care. The Act also preserves the sibling bond for children by requiring states to make reasonable efforts to keep siblings together in foster care. Finally, the Act establishes new family connection grants to support Kinship Navigator programs aimed at connecting kinship caregivers, including grandmother caregivers, and the children they are raising with the resources and services available at the state and county level. These supports are regarded as instrumental in fostering connections between caregivers and valuable resources within their communities and appear to hold benefits

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for all. Aging Related Programs The second constituency of grandmother caregivers who find their interests addressed through distinct advocacy on their behalf include the elderly and aging, defined typically as those grandmothers above the age of 65, or as the U.S. census categorizes them, 60. While advocacy for aging caregivers is not unique, this advocacy has historically focused on the needs of those providing care to aging peers, partners or family members, and how the caregiving role impacts their own health and retirement. Over the past two decades, however, AARP and other national and state aging-related policy organizations have responded to the gap in advocacy and continue to make gains in lobbying on behalf of aging grandmothers and grandfathers raising grandchildren. Recognizing the needs among this growing population, these organizations have expanded their focus beyond traditional aging related issues to include the unique challenges facing aging grandmothers providing care to minors and the ways in which their needs may differ from other caregivers. Among their lobbying successes, for example, was the 2006 Reauthorization of the Older Americans Act, which expanded the eligibility criteria for services through the National Family Caregiver Support Program to include grandparent caregivers and other relatives 55 years and older who are providing care to children under the age of 18. While meaningful, this expansion is still subject to a spending cap of 10% of all NFCSP funding and more notably, provides support to a group representing only half of all grandparent caregivers, the other half of whom are actually under the age of 55. While a small constellation of grandmother caregivers fall into either or both categories noted above, the vast majority do not. Indeed, most grandmother caregivers are not within the orbit of child welfare or a traditional aging population, and consequently, are not a targeted policy group. Advocacy for these grandmother caregivers may, consequently, require a multi-pronged approach. Back-Up Planning Permanency and stability for children being raised outside of the care of their biological parents emerges as an additional policy concern impacting grandmother

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caregivers, regardless of their route to care or legal status as caregiver. Because this population of caregivers is, by definition, older than most biological parents, concerns about the likely duration of the caregiving arrangement and a plan for care in the event of disability or death should be addressed by any professional working with a grandmother caregiver. Small scale studies demonstrate that most grandmother caregivers report having a back-up plan, with other relatives generally expected to take over responsibility for caring for the children if they are unable to do so [43]. However, it is unclear the degree to which such plans are communicated to or developed cooperatively with those other relatives, let alone reduced to written agreement. It is important to keep in mind that even grandmother caregivers who recognize the need for back-up planning may lack information about and access to resources to assist them with the development of an effective future care plan. For this reason, grandmother caregivers should be supported early in the caregiving relationship to articulate and develop concrete back-up plans that would take effect in the event that they became too ill or frail to continue in their current caregiving role. This is especially important for older grandmother caregivers, who are more likely than younger grandmother caregivers to need-but less likely to have in place-a back-up plan [43]. SUMMARY While caregiving grandmothers share a great deal in common with traditional grandmothers, the experience of being a grandmother caregiver brings many unique challenges to which service providers must attend when working with this population. Many grandmother caregivers not only struggle to provide for their and their family’s daily needs, but also face difficulties as the emotional, physical, and financial demands of parenting a second time around stretch their capacities, and, in some cases, undermine their own health and well-being. A thorough needs assessment will assist in developing a profile of gaps in services and can be an effective tool to help caregivers with future planning. Social workers are likely to encounter grandmother caregivers in a variety of settings, including schools, hospitals, and courts. However, although there are many opportunities to reach grandmother caregivers, there is a risk that they may fall through the gaps that exist between the categories into which they fall. At particular risk are younger, informal grandmother caregivers who may be disconnected from service

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providers due both to their age and informal caregiver status. ONLINE RESOURCES FOR CAREGIVERS AND PRACTITIONERS ●

●

●

●

AARP Grandparent Information Center http://www.aarp.org/family/grandparenting/ Connect with local and national groups, programs, resources, and services that support grandparents. Generations United: National Center on Grandfamilies http://www.gu.org Generations United promotes awareness of grandfamilies: grandparents and other relatives raising children, and how to help meet the needs of these unique families. From defining the term, providing an overview, and linking to Census data, the most up to date information on grandfamilies is shared with you on this site. GrandFamilies of America http://www.grandfamiliesofamerica.com The mission of GrandFamilies of America is to provide grandparents and relative caregivers of relative children, with the necessary tools to navigate the complex government systems they come in contact with, as they try to provide safety and permanency for the children in their care, while at the same time protecting their family ties and heritage. GrandFamilies State Law and Policy Resource Center http://grandfamilies.org The Grandfamilies State Law and Policy Resource Center serves as a national legal resource created to educate individuals about state laws and legislation in support of grandfamilies and to assist interested state legislators, advocates, caregivers, attorneys, and other policymakers in exploring policy options to support relatives and the children in their care both within and outside the child welfare system.

28 Older Women: Current and Future Challenges ●

●

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Grandparents Raising Grandchildren http://www.usa.gov/Topics/Grandparents.html This site provides information about the federal benefits and assistance available to grandparents raising their grandchildren. Here one can find State specific resources as well as data and publications regarding kinship care. National Center on Grandparents Raising Grandchildren http://chhs.gsu.edu/nationalcenter/ The National Center is at the forefront of issues associated with intergenerational kinship care, fostering collaboration among policy-makers, researchers and the service providers who work directly with grandparentheaded families.

CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

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CHAPTER 2

Caregiving Responsibilities of Older Women for Chronically Ill and Disabled Family Members Deborah J. Monahan* School of Social Work, Syracuse University, MacNaughton Hall Syracuse, NY 13244, USA Abstract: As women age, the likelihood that they will become caregivers increases. Older women perform caregiving roles in their homes and informally in long term care facilities for chronically ill and disabled family members. Married older women often provide eldercare to their spouses and caregiving roles are increasing as women age and men live longer. Providing eldercare has become a normative life transition for older women and a significant concern when their own health status is waning. Although older men also provide eldercare to parents and wives, their numbers are not as large. While less research has focused on the health implications of older women who are caregivers—the majority has focused on middle-aged adult daughters. Many older women provide care for family members and spouses in their home; however, when family members are too vulnerable and require higher levels of care (e.g. nursing homes or assisted living facilities), they spend considerable time visiting and helping care for them once they are in the long term care system. The purpose of this chapter is to examine the influence of demographic factors on the propensity of older caregivers to provide care to chronically ill and disabled family members and to examine the trends, policy and practice implications for social workers.

Keywords: Older women and adult daughters, Older women caregivers. LITERATURE REVIEW AND DEMOGRAPHICS For older women caregivers, the process of providing care to a chronically ill or disabled relative often requires a variety of adaptations. These adaptations include * Corresponding author Deborah J. Monahan: School of Social Work, Syracuse University, MacNaughton Hall Syracuse, NY 13244, USA; Tel: 315 443-5568; Fax: 315 443-5576; E-mail: [email protected].

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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less time for self and self care, more physical, psychological and emotional stress as care responsibilities increase. Older women caregivers are usually retired, their income may be limited, and the costs of care may outstrip their resources. Although a high proportion of family members provide eldercare (80%), parent care is generally considered a normative stress of adulthood [1 - 3]. Burnout may occur for older women who spend several years as caregivers to their parents and then become caregivers to their spouses (sometimes simultaneously). Whether or how the current economic recession will impact eldercare decisions by older women caregivers is not known. The purpose of this chapter is to examine the influence of demographic factors on the propensity of older caregivers to provide care to chronically ill and disabled family members and to examine the trends, policy and practice implications for social workers.

In the report, Caregiving in the United States [4] based upon telephone interviews with 1,480 family caregivers age 18 or older, two-thirds were female, 86% cared for a relative, and 36% cared for a parent. The major reasons given for providing care were old age and dementia (Alzheimer’s disease). The study found that “the older the caregiver is, the more likely she or he is to be in a high burden situation” (page 29). One of the main concerns of older women caregivers is their health and whether they have the strength to provide physical caregiving. Long term caregiving is stressful and can place some individuals at higher risk for negative health outcomes. Poor psychological health of caregivers has been associated with the increased burdens of care [5]. Caregiving has also been associated as a risk factor for mortality and morbidity [6, 7]. Monahan and Hooker found that caregivers with higher levels of perceived social support had better health [8]. While considerable focus has been paid to the stress-illness paradigm, researchers have found that health promoting and self care behaviors act as mediators to reduce the effect of caregiver stress on general well-being [9]. In an updated national profile of caregivers of frail elders from the National LongTerm Care Survey and Informal Caregiver Survey [10], primary caregivers were more likely to be children (41.3%) or spouses (38.4%); however, they were also more likely to be working alone, without secondary caregivers than in previous national surveys. In the ten-year time change for the study (1989 vs. 1999) the authors found that caregivers had a decrease in the number of hours per week from 31 to 30 (p.353) [10] and shifted their work so that more hours were spent with administration of medicine and less with household tasks, shopping or

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transportation. The authors speculate that this may be attributed to declines in instrumental activities of daily living (IADLs) and disability in the communitydwelling elderly, increased uses of assisted living facilities and technology (p.354) [10]. Whether disability and underlying physical, cognitive and sensory limitations are inevitable consequences of aging have been challenged recently in a review of trends in disability and functioning among older adults in the United States [11]. These authors suggest that problems with old age, disability and limitations have shown improvements in the last decade and note that these changes might be due to an increase in the educational attainment of the older population and that improvements in functioning have occurred despite chronic conditions. They also caution that the exact causes for these improvements are not fully known at this time and will require further investigation. The effects of caregiving on physical health were studied by Wallsten [12] who found that the chronic, ongoing nature of caregiving produces negative effects on the caregiver’s health symptoms and ability to carry out activities of daily living. In another study predictors of decline in physical health of caregivers were found to be poorer physical health at the start of the study, the amount of help they provided and a decline in their own mental health [13]. Researchers report that the majority of caregivers rated their own health as the same or worse than their impaired spouse and that physical health indicators were substantially poorer than older adults in the general population [14]. The intricate juggling act of caregiving and work was examined using in-depth interviews with women who reported that their health prior to caregiving was an important indicator of their capacity to provide care along with a complex process of coordination, negotiation, and mediation [15]. Women who face the multiple roles of caregiving, work and family roles also report the highest levels of stress [16]. Physical illness may also occur because caregivers fail to seek appropriate care for themselves [17]. Caregivers have also been found to be at a higher risk of developing clinical depression and cardiovascular problems [18]. The experience of caregiving varies by ethnicity and culture. When studying

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ethnic differences in the caregiving experience, Pinquart and Sorensen [19] found fewer differences in the use of formal support than expected; however, DilworthAnderson, Goodwin, and Williams [20] found that caregivers reporting a weak cultural justification for caregiving experienced the highest level of distress. This is an important finding because the caregivers in the study were followed longitudinally and caregiver background characteristics, stressors, and resources were important in predicting specific African American caregiver health outcomes over the course of the three-year data collection period. The authors concluded that future research should include more “qualitative methods to more fully understand how certain levels of cultural beliefs and values can become associated with poorer health outcomes (p. 144) [10]. Using data from the 2004 National Long-Term Care Survey and Informal Caregiver data, Hong [21] (p. 96) found that multiple service users were more likely to be African-American, educated and employed and to provide more diverse care tasks; however, the care recipients of in-home service users were older and more likely to have private insurance and higher levels of clinical needs (e.g. medical co-morbidity, functional dependency, and cognitive impairment). A better understanding of the role of ethnicity and culture in caregiver stress and service use is important for social service and health care professionals. CAREGIVER RESPONSIBILITIES OF OLDER WOMEN Caregiving involves a broad array of responsibilities and obligations that are often unspoken, culturally determined and change over time. Most adults don’t seek out the role of caregiver and find themselves in the midst of providing care when there has been a fundamental change in the older spouse or relative’s physical or cognitive health. The caregiver’s role has been characterized as “unique” and the process as idiosyncratic [22]. This occurs due to the range of roles for caregiving, the meaning of caregiving and the interpretation of the roles in one’s personal circumstance. How capable, ready, and willing someone is to become a caregiver often depends on the personal circumstances of their health, finances, family, and employment obligations. For older women, being a caregiver is an obvious choice, if you are retired from employment, living with a spouse or older frail relative, and have the time available for giving care.

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Caregiving identity theory [23] has been proposed as a framework for viewing the caregiving career as a “series of transitions that result from changes in the context of caregiving such as changing activity patterns and the health status of the care recipient” (page 48). In this process caregivers not only change their role due to the changing dynamics of the situation, but their identity as well and require accommodation in five unique domains: initiating caregiving activities; taking on the name—caregiver; accepting the unfamiliar/uncomfortable tasks; dominating the role relationship; and turning over the caregiving tasks to a formal provider. Montgomery & Kosloski emphasize that caregiver burden is not a “linear function of time, but rather the distress occurs whenever caregiving activities are perceived to be incongruent with one’s current role identity” (p. 50) [22]. This framework emphasizes the long-term trajectory of giving care and the complexity of the roles throughout the process. UNMET NEEDS In a meta-analysis of effective interventions with caregivers, researchers found that group interventions were less effective at reducing caregiver burden and increasing well-being than individual and mixed interventions; however, interventions in groups were more effective than individual treatments in improving care receiver symptoms (p. 367) [24]. The authors also reported that longer interventions may have beneficial effects for depressed caregivers due to longer contact with professionals. Also, caregivers of older care recipients were likely to experience more stressors and to benefit from interventions that “freeup” their time or provide emotional support. Below is an example of a case study that can assist social workers and health care professionals to understand the multiple issues in care planning for elder care. The case study illustrates the complexity of social/medical issues that need to be evaluated by social workers. Case Study: Trudy is a 75 year old retired school teacher who has been caring for her frail husband (Mark) who has Parkinson disease and early dementia. Trudy’s health has recently begun to deteriorate (she is a breast cancer survivor) and has severe arthritis and Type 2 diabetes. Mark has difficulty dressing, walking, and needs assistance with eating and toileting. He is 82 years old and retired 22 years ago as an electrician. They enjoyed a “carefree retirement and had minimal

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responsibilities for children and other family obligations. Now they are living independently and their two grown children live out-of-state. They have no other relatives nearby who can offer any assistance. One year ago, Trudy hired a nurse’s aide to help bathe Mark and do light housekeeping. In the past few months, it has become increasingly more difficult for Trudy to provide the care that Mark needs. She and her husband have a small pension and social security, not sufficient savings for Mark to move to an Assisted Living facility. In Table 1 below is a summary of the needs assessment for Mark and Trudy. It identified their needs, services, likely use of the services, the time frame or duration for the services and costs (low-high). This framework provides a snapshot of their current situation and will help them and the social worker determine the point of engagement in the intervention—or whether intervention is necessary at all—at this particular time. It helps to clarify whether there are services that may be “put –off” on the trajectory for a later or those areas that are currently “unmet. In Table 2, the social worker can begin to identify the unmet needs that may be present and help point the way for further discussion. These tables are both “works in progress” and can be useful, if the client is stuck and needs a visualization to facilitate care planning. Table 1. Needs assessment.

Trudy

Mark

Need

Service

Likely Use

Time

Cost

Emotional support

Support Group

Low

Short-term

Low

Physical lifting

Visiting Nurse/HHA

High

Long-term

High

Housekeeping

Home Health Agency

High

Long-term

High

Diabetic care

Medical Practice

High

Long-term

High

Respite

Home Health Agency

Low

Temporary

High

Casemanagement

Home Health Agency

Low

Long-term

High

Toileting, bathing

Home Health Agency

High

Long-term

High

Dementia care

Medical Practice

High

Long-term

High

Physical therapy

Medical Practice

Moderate

Long-term

High

Questions that could be asked to engage Trudy in care planning include the following: 1. What short-term and long-term caregiving goals does Trudy have for her

38 Older Women: Current and Future Challenges

2. 3.

4.

5.

Deborah J. Monahan

husband, Mark? Does she intend to begin making arrangements for another level of care that would involve, out of home care? Does Trudy understand where she might find out about potential funding sources for help with paying for the services? Can she afford to pay for the long term care services in a skilled nursing facility or an assisted living facility? Is Trudy interested in discussing her options with a social worker to help her understand Mark’s care needs and how to assess her readiness to be separated from him? What are Mark’s wishes and how can his interests be presented in a manner that he would understand and could help Trudy engage him in the process of changing his care?

Table 2. Unmet needs and questions to clarify needs. Client Service

Service

Patient (Mark)

emotional, physical, psychological, financial, medical, spiritual

Caregiver (Trudy)

emotional, physical, psychological, financial, medical, spiritual

INTERVENTIONS/BEST PRACTICES Numerous interventions have been tested in the past twenty years or so to help caregivers reduce the emotional and physical strains of providing care to frail spouses and relatives. These programs are particularly relevant for “older” caregivers who may be more vulnerable to the strains of daily caregiving responsibility for a frail relative. Several researchers have discussed the relative benefits of reducing caregiver stress through support groups, therapy groups and individual interventions [25 - 28]. More recent studies of “manually guided” stress reduction interventions [29] have shown that caregivers report lower levels of depression and anxiety than wait-list controls. Intervention efficacy can be guided by the research to inform practice decisions. Similarly, best practice draws our attention to issues of client diversity and culture by “examining the influence of socio-cultural beliefs on psychological distress for minority women caregivers to increase researchers’ understanding of the caregiving experience” (p. 772) [30].

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Stress management interventions have also been found to represent essential services for older caregivers. In a randomized study with three conditions: traditional weekly sessions, minimal therapist contact (MCT) sessions, or a waitlist control, the traditional format “reduced the levels of depression more than the MTC format, and levels of anxiety, burden and maladaptive levels were better at post-treatment (p. 212) [29]. Telephone support groups (TSG) have been shown to be efficacious for caregivers of frail older adults and can be used by disabled, rural, frail and hard-to-reach caregivers [31]. Researchers found that caregivers “emotional problems (e.g. anxiety, depression, and burden) were maintained or worsened in the wait-list condition (p.211) [31]. The authors conclude that caregivers’ distress is difficult to modify since caring for older dependent adults is a chronic stressor. Anger and depression management programs have been found to be effective for women caregivers of relatives with dementia [32]. In their sample of 163 women (mean age 63.4 years), who received psycho-educational training in a 2 hour workshop for eight consecutive weeks, followed by two, one-hour booster sessions, Coon, et al., reported that skills training through either depression management or anger management (grounded in cognitive behavioral principles), can lead to reduction in symptoms of anger, hostility, and depression as well as increases in self efficacy for managing behavior problems (p. 686) [32]. The authors note, however, that the findings were based on a sample of women who were primarily white, and middle-class and they urge further research on a more diverse sample of caregivers. Table 3 below summarizes the intervention efficacy for older women caregivers. Despite the major gains in identifying the best practices and efficacy of caregiver interventions, further research is needed to answer questions about the longer term effects of these programs on the health outcomes for older women. As you review the table, consider placing an X after assessing each program component (e.g. psycho-educational, anger management, etc.) and whether there is a best practice model or finding in the literature for its program efficacy, or whether more research is needed to determine the intervention efficacy.

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Table 3. Checklist for older women caregivers to determine intervention efficacy. Program Component

Best Practice

Or

Additional Research is Needed

Psycho-educational

_____

_____

Anger Management

_____

_____

Depression Management

_____

_____

Counseling

_____

_____

Support Groups

_____

_____

Telephone Support Groups

_____

_____

Internet Support Groups

_____

_____

(Place a check in the box by assessing the program component and whether there is evidence for best practices with the specific needs of older women caregivers)

PRACTICE TRENDS/ISSUES The socio-political forecast in the 1980-90s that caregiving would become a normative passage in old age [1, 2] has become a reality for today’s older women; thus generating interest in the topic of older women caregivers. The increase in caregiving roles and responsibilities has also lead to the increased interest among social workers in best practices for working with these clients. Social workers trained in graduate social work education should understand the social needs of older women caregivers and be competent to assess their service needs. Trends in eldercare suggest that social workers have a better understanding of the normative medical/health changes with age and how frailty affects family caregiving and its impact on the dynamics of interpersonal relationships. Having greater familiarity with the services provided by the Area Agencies on Aging in their communities will enable social work practitioners to make referrals to relevant programs that assist caregivers. Another practice trend involves an increasing role for clinically trained social works who can engage older women in therapeutic relationships dealing with the emotional stresses of care provision along with their physical strains, and helping them understand their own coping resources. The knowledge base for these skills can be facilitated by the ongoing training and webinars provided by professional associations (NASW, GSA, etc.), on-the-job training, and education provided by journals from those professional organizations as well

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as the internet. DIVERSITY IMPLICATIONS Finding resources to support caregiving is particularly challenging for women of color as well as those who are disabled, live in rural communities and have limited access to major metropolitan areas. As women age in older communities, they face additional challenges in the context of the changing landscape of their neighborhoods. As their own friends and family members re-locate to other neighborhoods to receive services, the surroundings may not represent their own ethnic, racial or economic preferences and circumstances. Adaptations may be necessary to maintain cultural relevance in neighborhoods that change over time that have lost important aspects of their unique historic roots. These changes can be both positive and negative as replacing familiar local stores with large-scale national chains that require transportation to access. Similarly, neighborhoods deteriorate over time and may not generate the revenues that provide accessibility and personal safety. For older women who intend to remain in their own homes and neighborhoods as they age as caregivers, these are critical factors to assess. Navigating changes in the urbanization of their neighborhoods and determining whether to age-in-place or to re-locate is an important decision. Furthermore, finding affordable long term care for minority caregivers and their family members can also be challenging. Social workers have a particular responsibility to assure that services are available to all older caregivers and that they have access to culturally-relevant and empirically based interventions as they arrange for care. When attempting to locate such services, older women caregivers can use the website eldercare.gov sponsored by the United States, DHHS, Administration on Aging. This website identifies services by zip code so that caregivers have immediate information about their specific communities [33]. Environmental accessibility is particularly relevant for older women caregivers who have disabilities and they may contact the website for Americans with Disabilities [34] to learn more about home modification and other resources to remove environmental barriers. Implementing culturally-appropriate interventions requires that language, hearing, and visual barriers are eliminated and that social workers advocate for these services to be barrier-free.

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POLICY TRENDS AND ISSUES Services to support caregivers have increasingly become available through governmental agencies, in particular, the local Area Agencies on Aging (AAA) funded by the Older Americans Act. According to their website: http://www.aoa.gov older adults remain in their homes - if that is their preference - aided by services such as meals-on-wheels, homemaker assistance and other services that facilitate independent living as a viable option. By making a range of options available, older individuals can choose the services and living arrangement that suit their needs. Older women caregivers with access to computers can take advantage of the information provided by these websites and others, such as the Americans with Disabilities Act programs http://www.ada.gov/ and the Family Caregiver Alliance http://www.caregiver.org. These websites [33 - 35] provide up-to-date information on a wide array of relevant topics for caregivers as well as current and pending legislation and federal and state policies for family caregivers. They also summarize the latest service interventions and research findings. Aging-in-place and a new shift toward urban living are two important trends to keep in mind as an increasing number of baby boomers become caregivers. In a Washington Post article, Patteson [36] discusses barrier-free homes and how older adults are getting “face lifts for their homes to make them more user-friendly as they age.” Moreover, Chernikoff and Yoon [37] see boomers accelerating a shift toward urban living that will create a new real estate boom in inner cities. These compact, walkable neighborhoods are predicted to make a comeback from the post World War II single family home in suburbia. Innovative real estate and tax credits in the future could fuel this change. RESEARCH IMPLICATIONS Greater attention needs to be given to the fidelity of the interventions for caregivers. Recent studies examining caregiving relationships for older women have not focused on the specific needs of those individuals who are disabled, in poverty, living in rural communities, and those who are lesbian or transgendered. Limitations in the current literature exist due to the plethora of convenience

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Older Women: Current and Future Challenges 43

samples and small sample sizes that have plagued the caregiving literature for over twenty years. Yet, these voices are beginning to be heard. The next generation of professional social workers has greater access to web-based training to learn more about the specific needs of older women caregivers. Most researchers have emphasized the increasing need for more randomized clinical trials and the impetus for this methodological approach has found support in the National Institute of Health and the National Institute on Aging. A closer examination of dosage effects of interventions and a closer accounting of the drop-out and attrition rates in caregiver samples should be made. Many studies use wait-list control groups and yet do not report findings that effectively separate out the differences. Greater uniformity in the measurement of care burden and stress along with greater attention given to both the negative as well as the positive outcomes of care provision are warranted in future studies. Attention to response bias and the social desirability of being a caregiver will need greater attention in future studies. The use of convenience samples in research on family caregiving has been raised [38] as troublesome due limited generalizability. A reduced emphasis on adult middle-aged daughters, as caregivers and an increased focus on client diversity and caregivers who are old-old and frail elderly is also warranted. CONCLUSIONS AND RECOMMENDATIONS FOR BEST PRACTICES Social workers are increasingly working with older women who provide care to spouses, parents and other relatives. Not all social workers have advanced training in social gerontology or experience working with older women caregivers. In this chapter, caregiving responsibilities of older women for chronically ill and disabled family members have been identified to encourage social workers to gain a better understanding of this population. A best practices perspective has been presented to identify the major themes and issues in social work practice with older women caregivers. By using a case study of an older couple with the older woman in the role of the “caregiver” social workers can conduct a “Needs Assessment” analysis (Table 1) and identify what specific services are needed, whether the client is “likely” to use the services, whether the services are short or long-term and the estimated cost for the services. By using this analysis, the social

44 Older Women: Current and Future Challenges

Deborah J. Monahan

worker can present an overview of the type, frequency and cost for services. Next there is an analysis of the “unmet needs” for the client (Table 2). An eldercare framework includes the family system in the analysis (Mark-the patient) and Trudy-the caregiver) due to their advanced age and frailty. The assessments in Tables 1 & 2 become the core of the best practices recommended for this couple to increase their quality of life. The framework for best practices includes knowledge of the demographic trends associated with aging in America and the increased numbers of frail older adults who require assistance in the quality of their daily functioning. Advanced training for social workers in gerontology or work with older families illustrates the importance of understanding the emotional, physical and financial demands of caregiving. Older women providing care to chronically ill and disabled adults can become burdened by the amount of caregiving they provide. This may accelerate their own health problems making it difficult for them to continue caregiving. Knowledge of caregiver burden and the supportive services will enhance the ability of older women to maintain their role as caregivers. Social workers can help their clients understand caregiver burden and recommend resources to reduce stress such as support groups and counseling. Particular attention could also be given to providing and recommending services that are culturally relevant and designed for clients who are disabled and require physical accommodations. As social workers introduce best practice principles in their interventions for older women caregivers, they may also identify how technology can be used for supportive home care. As more social workers become proficient in using best practice, their work with older women caregivers will become more effective in the future. CONFLICT OF INTEREST The author confirms that author has no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none.

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Older Women: Current and Future Challenges, 2016, 48-70

CHAPTER 3

Older Women at the Edge: Economic Disparities of Older Women Christine George1,*, Julie Hilvers2 and Susan Grossman3 1

Center for Urban Research and Learning, Loyola University Chicago, Chicago, Illinois, USA

2

Policy Research Collaborative, Roosevelt University, Chicago, USA

3

School of Social Work, Loyola University Chicago, Chicago, USA Abstract: This chapter examines the economic wellbeing of older women. As the baby boom generation of women is moving into early “old age” they join earlier cohorts of older women, many of whom are in economically precarious situations, their wellbeing compromised by their economic instability. This chapter focuses on the various “pathways” and contexts that lead to economic distress among segments of older women, including a focus on factors that increase the likelihood of homelessness. Finally, it discusses various policies and programs that could both ameliorate this situation for older women in economic distress and also prevent future cohorts of women falling into economic difficulties.

Keywords: Aging of women, Economic disparities, Homelessness, Income levels, Older women. AGING IS A WOMEN’S ISSUE: THE ECONOMICS OF OLDER WOMEN In many ways when you talk about the issues of the aging, you are likely to be talking about issues related to women or more likely to impact women. That is because the majority of the older adults in the United States are women. And, these women are much more likely to be at economic risk than their male counterparts. This economic precariousness of older women is related to a Corresponding author Christine George: Center for Urban Research and Learning, at the Loyola University Chicago, Chicago, Illinois, USA; Tel: 1 - 773 - 508-8533; Fax: 1 - 773 - 508-8510; E-mail: [email protected].

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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Older Women: Current and Future Challenges 49

confluence of factors associated with the fragile economic circumstances - often dire poverty - that women experience in this society. These factors include singlefamily head status, reduced labor force participation due to care giving, and low wages and benefits from work due to job segregation and discrimination. These factors, experienced during the life course, combined with other factors pertaining to aging create challenges, many of which are unique to women. First, we explore some of the demographic and economic realities of older women. Then, we look at how these factors work together over the life course to contribute to poverty, exploring the pathways to economic precariousness. Last, we discuss the policy implications and propose policies that would begin to address the economic circumstances of older women. These recommendations fall into two broad categories. One set of policies relates to structural changes that should occur earlier in the life course that would put women in a better economic position. A second set of policies speaks to the ways in which we support older adults in general and older women in particular. It is our hope that these recommendations will help guide our thinking about how to address the challenges to their wellbeing faced by older women. A Profile of Older Women The number of older Americans is increasing in this country, with some projections that within the next generation it will double. In 2012, roughly 79.4 million individuals or 25.7% of the population were 55 or older, with the majority, 54%, being women [1]. And looking at those 85 and older, 64% are women (see Fig. 1) [1]. The extent of this gender disparity is highlighted in a recent report by the Administration on Aging [2] that notes in 2012, the female to male sex ratio for individuals ages 65 and over was 129, or 129 women for every 100 men. In contrast, for those 85 and above, the ratio was 200 [3]. Race and Ethnicity While currently the vast majority of older women are white, this is changing and by mid-century will reflect the increasing diversity of the general U.S. population. Currently, the majority (80%) of 55 + women are non-Hispanic white, followed by non-Hispanic Black (9%); Hispanic of all races 7%, and non-Hispanic Asian,

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George et al.

3% [4]. However, population projections made by the U.S. Census Bureau suggest that in the next 40 years, the proportion of white, non-Hispanic individuals who are 65 and older will decline as a proportion of all older adults while racial and ethnic minorities will be increasingly represented [4]. Especially notable in these census projections is the forecast that the number of Hispanic individuals (both male and female) over 65 will almost triple, from 6.9% in 2010 to 19.8% in 2050 [5].

a

Source: [1]

Fig. (1). Percent of men to women by age group.

Living Status The older women get, the more likely they are to be living alone. While just under one-third of women between the ages of 65 and 74 live alone (27.7% in 2010); just under 50% of women between the ages 75 and older live alone (47.4% in 2010 [5]. While the older a man gets the more likely he is to live alone, in no age group are the majority of men living alone [5]. Most of this increase in living alone is due to the death of a spouse, which is more likely to be the male spouse. And, living alone is strongly associated with increased poverty in older individuals [6].

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Grand-parenting – Older Adults Raising Children While most older adults do not live in multi-generation families and are no longer care-giving (other than possibly to their spouse) a sizable portion are becoming the primary caregivers for their grandchildren. According to the 2000 U.S. Census, which marked the first time such questions were included, 158.9 million people age 30 and over lived in households in which 3.8 million, or 3.6%, were co-resident grandparents, defined by the Census Bureau as living with grandchildren younger than 18 [7]. Of these co-resident grandparents, 2.4 million or 42 percent were also “grandparent caregivers,” which the U.S. Census defines as people who had primary responsibility for their minor co-resident grandchildren. Further, among these grandparent caregivers, 39 percent had cared for their grandchildren for 5 or more years [7]. Additional analysis of the 2000 Census data indicates that of grandparents 60 and older, 31% are caregivers. Further, of these grandparent caregivers 60 and over, 55% cared for their grandchildren for 5 years or more, compared to those younger than 60 (32%) [7]. While care giving responsibilities decline with age, the Census data indicate that 1% of all grandparent caregivers were 80 or older [7]. (For a more in-depth analysis see Coupet and Cryer-Coupet in this book.) Health and Disability Most older women of all races and ethnicities rate their health as good to excellent. However, as they age there is an increase in the proportion who rate their health as fair or poor (see Table 1). This is especially true of non-Hispanic Black and Hispanic women compared to non-Hispanic white women [5]. Indeed, among Hispanic women, the proportion of those 85 and over who rate their health as fair or poor versus good to excellent is evenly divided with 50% endorsing each rating. As can be seen in Table 2, arthritis and hypertension are the chronic health conditions most commonly experienced by women ages 65 and older. These conditions are experienced by over half of these women. In addition to these, heart disease is prevalent among over one-quarter of women 65 and older while cancer and diabetes are prevalent in about a fifth (Table 2).

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Table 1. Respondent-assessed health status among women age 65 and over, by selected characteristics, 2008-2010. Age 65 to 74

Age 75 to 84

Poor to Good to Fair Excellent Health Health

Poor to Good to Fair Excellent Health Health

Age 85 and over

Total 65 and over

Poor to Good to Fair Excellent Health Health

Poor to Good to Fair Excellent Health Health

Non Hispanic White

17.3

82.7

23.4

76.7

29.9

70.1

21.3

78.7

Non-Hispanic Black

33.3

66.7

44.1

55.9

45.7

54.3

38.3

61.8

Hispanic or Latino (any race)

35.6

64.4

40.8

59.2

50.2

49.9

38.5

61.5

TOTAL

20.7

79.3

26.8

73.2

32.3

67.7

24.4

75.6

Source [5]: Note: Data are based on a 3-year average from 2008-2010. Reference Population: These data refer to the civilian noninstitutionalized population. a

Table 2. Percentage of women age 65 and over who reported having selected chronic health conditions, 2009-2010. Heart disease Women

25.5%

Hyper-tension Stroke Asthma

57.2

8.2%

12.5%

Chronic bronchitis or emphysema

Any cancer

10.8%

21.2%

Diabetes Arthritis

18.2%

56.1%

Source: [5] Note: Data are based on a 2-year average from 2009-2010 Reference Population: These data refer to the civilian noninstitutionalized population in the United States. a

Data from Medicare enrollees (age 65 and older) related to functional limitations indicate that in 2009, about 30% of women were unable to perform one or more physical functions which included stooping or kneeling, reaching overhead, walking 2 to 3 blocks, lifting 10 pounds or writing. Of note is that 21% could not walk 2 to 3 blocks [5]. As women age these limitations become greater [8]. In summation, older women of all races and ethnicities tend to feel that they are healthy, although that slightly decreases as they age. Nonetheless many face health challenges with more than one half reporting that they have hypertension, or arthritis, with a quarter reporting heart disease and a fifth cancer.

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Housing Instability A situation faced by older poor women is precarious housing and challenges maintaining stable housing. A great number of older women receive housing subsidies to assist them to maintain housing. The American Association for Retired Persons (AARP) reported in 2002 that most - 78% - of the approximately 1.72 million older adults resided in federally subsidized housing were low-income single women age mid-70s through mid-80s [9]. A growing number of older women in the U.S. also experiences periods of homelessness. The number of homeless individuals in their 50s, 60s and older has grown in the U.S [10, 11]. Researchers report that the older or elderly homeless do not constitute a large proportion of the homeless population in the U.S., but they project an increasing number of older homeless individuals as “baby boomers” age, and affordable housing is in short supply [11, 12]. The Economic Resources of Older Women This housing instability is tied to economic sustainability. A review of the specific income resources of older women demonstrates their economic fragility. Here we briefly examine the economic data as it relates to the realities of women 65 and older. We first look at the gender gap in poverty rates and in the income distribution and then further explore sources of income, which account for this gap. It is important to remember here that the economic status of older women reflects economic issues and factors that they have experienced throughout the life course. Poverty There are disproportionate poverty levels for older women in comparison to men. In 2010, the percentage of women age 65 and older living in poverty was 10.7%, whereas the rate for men was 6.7%. For women age 75 and older, the poverty rate was 12.1%, and for men of the same age, the rate was 7.0% [13]. In addition to these gender disparities, significant racial disparities persist among older women in the U.S. Data from the U.S. Census, Current Population Survey from 2011 demonstrate that a disproportionate percent of women of color aged 65

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and older are impoverished. As Table 3 shows, nearly 13% of American Indian/Alaska Native and Asian American, 21% of African-American, and 20% of Hispanic women aged 65 and over had incomes below the poverty threshold [14]. And, living status, as noted above, tends to exacerbate this pattern. Thus, in 2012, the rate of poverty for all older persons living alone regardless of gender was 16.8% compared to a rate of 5.4% for those living in families. When we add race and gender to this equation, the rates increases such that 33% of older African American who women live alone are in poverty as are 41.6% for older Hispanic women in this situation (not in table) [3]. Table 3. Women aged 18 and older living below the poverty level,* by race/ethnicity and age, 2011. Race/Ethnicity

Age Group (Percent of Females) 18-44 Years 45-64 Years 65 Years and Older

Non-Hispanic White

13.4%

8.7%

8.5%

Non-Hispanic Black

29.2%

22.5%

20.5%

Hispanic

27.0%

18.7%

19.7%

Non-Hispanic Asian

13.5%

8.6%

13.3%

Non-Hispanic Native Hawaiian/Other Pacific Islander

16.0%

----

----

American Indian/Alaska Native

34.2%

22.3%

12.9%

Source [14]: *Poverty level, defined by the U.S. Census Bureau, was $23,021 for a family of four in 2011. a

Income Distribution The incomes of older women in the U.S. span a broad range, yet there is a persistent income gap between older women and men in the U.S. Fig. (2) shows that nearly half (45%) of older women aged 65 and older had an annual personal income of $10,000 or less [15]. In comparison, fewer than 20% of older men had an income of $10,000 or less. Conversely, a disproportionate proportion of men are concentrated at the upper end of the income distribution. As Fig. (2) shows, over 18% of older men had incomes of $40,000 or more, yet only 6% of older women had this higher income. While the data in Fig. (2) is from the early part of the 21st century, more recent income data, from the 2012 Current Population Survey (not in figure) indicates that this disparity remains. The median income of women aged 65 and older in 2012 was $15,557, just 59.7% of the median income

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of men aged 65 and older ($26,596) [16].

a Source: [15] Chart reprinted with permission from International Association for Feminist Economics.

Fig. (2). Income distribution among women and men aged 65 and older, 1998-2000.

Sources of Income To get a better understanding of this disparity we need to consider the sources of income for older women, focusing on what are commonly known as the three “foundations” of retirement income: social security, pensions, and assets/savings. As we will discuss, a gender gap between older men and women exists for every income source received - both in the amount received and the balance between these three foundations, reflecting the disadvantage women face in their economic status throughout the life course. Social Security and SSI Among older women in the U.S., the most common source of income is Social Security. Data from the 2012 Current Population Survey presented in Fig. (3) indicates that the proportion of older men and women who receive this source of income is quite similar, 85% of women aged 65 and older received Social Security as did 84% of all older men [17]. Yet Social Security is a more critical income source for women. According to the National Women’s Law Center, on

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average, female beneficiaries 65 and older received 61% of their total income from Social Security while for men, Social Security comprised 56% of their total family income [18].

Source: [17] Author’s calculations based on 2012 Current Population Survey Annual Social and Economic (ASEC) Survey. Earnings and income data are for calendar year 2011. Chart reprinted with permission from the Institute for Women’s Policy Research.

Fig. (3). Percent of women and men aged 65 and older receiving income from each source, 2011.

Further, in 2012, Social Security was essentially the only income source for 30% of all elderly women (90% of their income). This was true for 23% of all older male beneficiaries [18]. And, despite their strong reliance on this income source, the average Social Security payment for women of $10,418 in 2011 is only 93% of the $13,234 average payment to men (see Fig. 4) [17]. There is also a racial and ethnic gap in receipt of Social Security among older women, with non-white women being at more economic risk. Data from 2002 through 2005 suggest that a much higher proportion of white women receive Social Security, ranging from a high of 91% of white women to a low of 66.5% of Asian American (table not presented) [19]. Additionally, there is a gap in the average benefit received by women of color. Data from the 2012 Current Population Survey reveal that older (65 and over) white women, whose average benefit was $10,917, received roughly 30% more than Hispanic women whose

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average social security benefit was $7,648 [17]. Non-white women are also more likely to be among those who are in the most precarious economic situation in old age, specifically, those who are not eligible for Social Security retirement benefits who must rely only on Supplemental Security Income (SSI). SSI is a means-tested source of government-funded financial assistance for those individuals who have not had adequate work-force participation to be eligible for Social Security Retirement. SSI benefits are significantly lower than Social Security benefits. For example as of 2015 the average monthly SSI benefit was $733 [20] while the average monthly Social Security retired worker benefit after Cost of Living Adjustments was $1,328 [21]. Between 2002 and 2005, 4.2% of all women 65 and older received income from SSI compared to 2.5% of men in the same age cohort [19]. Yet, in terms of racial and ethnic characteristics, white women “defaulted” to SSI at rates much lower than women of color. For example, only 2.4% of all non-Hispanic white women received income from this source during this time period compared to 11.1% of older African American women, 13.7% of older Hispanic women and 14.2% of older Asian American women (table not presented) [19]. Assets/Savings As is evident in Fig. (3), the second most common type of income for older women is income from assets (including real estate, stocks and bonds, and savings accounts). Forty-eight percent of older women received income from assets in 2011. The average annual income from assets for women during this time period was $2629 (see Fig. 4). In comparison, 56% of all men 65 and over obtain money from assets and their average earnings in 2011, of $3,975 was one third higher (see Figs. 3 and 4) [17]. Further, a huge racial and ethnic disparity in the receipt and median income from assets is present among older women. In 2011, nonHispanic white older women earned 4 times as much in asset income than older African American and Hispanic women ($3,081 on average compared to $675 and $639 on average respectively) [16].

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Source: [17] Author’s calculations based on 2012 Current Population Survey Annual Social and Economic (ASEC) Survey. Earnings and income data are for calendar year 2011. Chart reprinted with permission from the Institute for Women’s Policy Research.

Fig. (4). Average annual income from each source among women and men aged 65 and older, 2011.

Analyzing data from the Luxembourg Wealth Study, Gornick et al. report that asset poverty is common among older women aged 60 and older in the U.S [22]. They note that nearly 40 percent of older women - this includes older women as heads of households or spouses - “…do not hold enough financial assets to survive for six months, at the poverty level” (p.289) [22]. This level of asset poverty is even greater for older single women, as 48% of single older women were asset poor. Lack of home ownership contributes to asset poverty and might explain the asset poverty more likely to be experienced by single older women. Homeownership is a typical form of wealth held by individuals and households in the United States, and for many middle- to low-income individuals and households, their home is their most valuable or only asset [23]. Gornick et al. report that among single older women, the homeownership rate was just over half (51.4%) [22]. Gornick et al. (2009) also documented the savings or financial assets of poor older women in the U.S. Among older women who owned their homes (both those who were single and those women as head or spouse) the median value of their

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financial assets was $1,800 [22]. For the cohort of women who resided in rental housing, and did not own homes, the median was even lower; their reported median financial assets were $230. Pensions If we consider that women in general typically have shorter work histories and lower incomes and earnings in comparison to men’s, it is not surprising that they also have lower pension incomes. In addition, women are much more likely to be in positions not covered by pensions than men [24]. Thus, 29% of older women received income from a pension in 2011, with an average annual income of $4,011 from this source. In comparison, 46% of men reported pension income in 2011, with an annual average more than twice as great as that of women at $9789 (see Figs. 3 and 4) [17]. Data on race and ethnicity from 2002 through 2005 indicate that similar to the racial and ethnic disparities present with receipt of Social Security and assets, the proportion of white women receiving pension income was generally higher than for women in other racial groups. Roughly 30% of all older non-Hispanic white women reported pension income during this time period compared to 26% of African American, 17.1% of Asian American and 12.7% of older Hispanic women [19]. However, the average annual pension income received by white women was less than the average received by Asian American and African American women $6,300 on average for non-Hispanic white women compared to $6,997 for African American and $7,182 for older Asian American women [19]. This might imply that the women in those groups that were covered were likely to be in professional positions (especially public employment for African American women). EMPLOYMENT INCOME Another form of income is obviously employment, either full- or part-time. The majority of older adults are no longer in the labor market. Yet, it is important to consider that older adults are not necessarily unemployed because of retirement. Shaw and Lee suggest that men and women continue to work after the age of 65 in order to supplement their insufficient retirement incomes [15]. For whatever

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reason, older women are participating at lower rates in the labor market than older men. According to 2012 Census data, 16% of all older women reported income from earnings in 2011 compared to 27% of older men (see Fig. 3) [17]. And those who are working, experience the pattern of low wages, job sex segregation, and shorter work, reflecting gender inequality in the work force. In this next section, we elaborate further on this pattern. Employment Patterns Table 4 presents data on the employment patterns of older adults by gender. As the data indicate, the largest plurality (40%) of older women who are still working are working in management and professional jobs, with almost 2/3 of this group working in professional occupations (not in table). About 35% of older women are employed in sales and office occupations and, most of those in this category are engaged in office and administrative activities (again about two-thirds in this occupational category) rather than sales-related work (not in table). There are very few older women working in farming, construction, and production (7%). The types of work that older women and men do vary (Table 4). Within the managerial and professional work category, women are more likely to be professional and men, managerial. Looking at other work categories, women are concentrated in office and administrative work and service occupations. Men on the other hand are more likely to be concentrated in construction, production and transportation. This reflects a bias that exists in all age groups, and it is important to note because the jobs in which males are concentrated have typically tended to be unionized and thus, to include better pay, benefits and pensions. This segregated work force helps to explain why most women arrive in retirement with a very weak financial foundation of pension, social security and savings as we have seen above. Finally, data on full-time versus part-time employment from the 2008 Current Population Survey also indicate gender differences which reflect patterns of employment that exist throughout the life course. Almost all men between the ages of 55 and 59 who were working, (92%) worked full time as did 85.6% of men between the ages of 59 and 64. Among women in the same age groups,

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80.2% and 71.1% respectively of those working were working full-time. This gender difference continued as men and women aged even though the proportion of older men who were employed continued to fall. It is not until age 85 or older that the proportions of employed men and women who were working full versus part time became more equivalent. Among employed men in this oldest age group, 61.2% work full time, as did 59.4% of women 85 and older who were employed [4]. Table 4. Occupation of the civilian employed population 55 years and over by sex and age, 2008. Sex and occupation

Total 55 years and over Number*

Percent

14,143

100.0

Management, professional, and related occupations

5,919

41.9

Service occupations

1,422

10.1

Sales and office occupations

2,386

16.9

Male

Farming, fishing, and forestry occupations

131

0.9

Construction, extraction, and maintenance occupations

1,841

13.0

Production, transportation, and material moving occupations

2,444

17.3

12,703

100.0

Management, professional, and related occupations

5,109

40.2

Service occupations

2,237

17.6

Sales and office occupations

4,434

34.9

23

0.2

Construction, extraction, and maintenance occupations

58

0.5

Production, transportation, and material moving occupations

841

6.6

Female

Farming, fishing, and forestry occupations

Source [1]: *Number in millions: A dash (-) represents zero or rounds to 0.0. a

Employment Wage Gap As noted previously, in light of the fact that older men who are working tend to work more hours and in fields that typically pay more, it is not surprising that wage data confirms that there is a wage difference among older men and women. As can be seen in Fig. (4) the average annual income from earnings for women was only about one third of the average for men ($4,544 versus $13,731) [17].

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Summary As these data show, older women lag behind older men in every major source of income critical to older adults. They tend to be less likely to receive income from private sources such as assets, pensions and earnings, leaving them more dependent on public sources such as social security and SSI. And in all instances, they receive less, on average, than men. Differences are especially large with respect to pension income and earnings, but they are notable for sources such as social security as well. As a consequence, older women are more likely to be in a precarious economic situation and at increased risk of poverty. We next consider the life patterns that contribute to this situation. LOOKING BACK: LIFE COURSE PATTERNS THAT CONTRIBUTE TO THE OLDER WOMEN’S ECONOMIC PRECARIOUSNESS The economic precariousness of older women is related to women’s role in society, to ideologies about that role, and the policies that reflect these ideologies affecting women of all ages. In this section, we explore some of these beliefs and resulting policies as well as their implications for older women. The Male Breadwinner Model and Family and Civil Law Barusch notes that policies affecting women reflect a recurring theme that sees women as wives and mothers first [25]. Thus government intrusion has been viewed as potentially violating the sanctity of the home, a home that is ultimately a man’s castle [25]. Such attitudes have affected women’s position in terms of activities such as borrowing money and attaining credit, divorce decrees, custody and reproductive rights. For example, it was not until 1974 that the Equal Credit Opportunity Act prevented discrimination in lending on the basis of gender (p.357) [25]. Women as Workers Women’s position as workers has also been shaped by the perspective that the home is women’s sphere as well as the view that women in the work place are in need of special protections [25], resulting in lower pay for women and occupational segregation. While in the last fifty years several important strides

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were made in gender equity in employment [25, 26], as we have seen in the data on older women and men there is still occupational segregation in the labor force and most women continue to work in occupations where most of the employees are women. According to the Institute for Women’s Policy Research, women continue to earn less than men, with annual earnings ratio of 78.3 cents for every dollar earned by men [27]. Some analysts contend that the wage gap exists because women are less committed to work, are less educated, have interrupted work histories and consequently do not build up seniority on jobs [25]. However, Segal points out that the gap exists even when controlling for education and work status [28]. Rather, most difference appears to be due to discrimination. Measures such as the Equal Pay Act and Title VII were enacted to potentially combat such discrimination, but its continuing presence and persistence has led to the introduction and/or passage of additional legislation including the Paycheck Fairness Act which is intended to close loopholes in previous legislation that have enabled pay discrimination to continue [26]. Women as Caretakers Women’s role as caretakers often forces them to leave jobs or have irregular work patterns. Issues like a family member’s illness or lack of child care become problems that force some women to leave jobs. Indeed, a 2004 study by the Institute for Women’s Policy Research [29] which used data from the Panel Study of Income Dynamics to follow men and women during their prime earning years between the ages of 26 to 59, over a 15 year period found that slightly more than half of the women (52 percent) had at least one complete calendar year without any earnings while the same was true of only 16 percent of the men (p. iii). The Family and Medical Leave Act, which passed in 1993, was intended to provide some protection for caregivers by providing for up to 12 weeks of unpaid leave [25]. Because leave is unpaid, however, many workers cannot afford to take advantage of the Act. Women and Unemployment Insurance These irregular employment patterns are commonplace for many women workers. One implication of this is that women are not likely to receive unemployment

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insurance if they lose their employment. An Institute for Women’s Policy Research study documents gender disparity in receipt of unemployment insurance (UI), as 33% of unemployed women received UI, in comparison to 37% of unemployed men [30]. This disparity continued into the economic recession of the late 2000s as between December 2007 and November 2009 36.8% of unemployed women received unemployment benefits, compared with 40.3% of unemployed men [31]. Women and Social Security The male bread-winner model is also embedded in Social Security [32], causing in part, the inequities described above that women face in Social Security payment in retirement. The bread-winner model causes this inequality in two ways: by penalizing women (or caregiving men) for the time they are removed from the workforce for caregiving, and for assuming that the family income is provided for by one and not two wage earners. Currently the calculation of Social Security benefits does not take into consideration that care givers are likely to have more years of low earning or no earning in their working lifetime. Again, the calculations for Social Security currently reward the “family” income of the single earner family when both of the couples are alive and penalizes the secondary earner (the lower paid earner) when the earner is deceased. Since women are usually the lower paid earners, this disproportionately impacts them. Women and Welfare Historically, women, to support them in their caretaking roles, have been more likely than men to rely on the public welfare system. Cash assistance to poor women with children, however, has never been generous enough to bring those families receiving such assistance above the poverty line. This is still true for the Temporary Assistance for Needy Families (TANF) program. A 2003 study by the Institute for Women’s Policy Research [33] which analyzed data from the U.S. Census Bureau’s 1996 Survey of Income and Program Participation (SIPP) to compare the income characteristics of low-income mother family households before and after the passage of the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) found that over the four-year period, the average

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monthly benefit amount decreased from $382.48 before the Act was passed to $345.55 after its passage. When mothers leave TANF, they typically enter a lowwage position which pays an average wage of between $7 and $8 an hour [34]. This combination of insufficient benefits and poverty again leave women in a precarious situation when they age. SUMMARY AND RECOMMENDATIONS This chapter described how older women’s wellbeing and welfare is tied to inequality throughout their life course. Below we summarize the key findings and then present related policy recommendations to ameliorate the economic precariousness of older women and women throughout the life course. Key Findings The following are key findings from this chapter: 1. Women throughout the life course in all income groups are more likely to be economically unstable, to not have pensions, to have lower savings and lower Social Security benefits and are more reliant on SSI. 2. Women throughout their lives generally earn less than men, have more tenuous work histories, are frequently segregated in low-paying jobs, and do not receive adequate government support when they are not working because of their caretaking responsibilities. 3. These experiences throughout the life course result in economic precariousness of women as they age. a. Older women experience an economic fragility, with a disproportionate poverty rate relative to older men. Racial disparities compound these gender disparities, with non-Hispanic white older women experiencing lower rates of poverty in comparison to older women of color. b. For those older women who continue to work, their lower earning status continues. 4. Demographically, the proportion of older women of color is increasing and they are more likely to be in economic distress, pointing to even greater challenges that older women, as a group, will face in the future.

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RECOMMENDATIONS The implications and subsequent recommendations from these data fall into two broad categories. First, we need to consider the policy changes that should occur earlier in the life course that would put women in a better economic position as they age. Such policy recommendations are the following: 1. Structural changes in Social Security are necessary so that women are not penalized for their caretaking responsibilities and irregular work patterns. One of several solutions might include pooling the Social Security payments of husbands and wives such that each partner contributes 50% of their Social Security earnings to the total earnings of the other. 2. In terms of pensions, there is a need to reverse the trend to have fewer workers covered by adequate pensions and in fact expand pension coverage. In addition, there is a need to address some of the eligibility difficulties of accessing the benefits of ex-spouses. 3. Address wage inequities through policies such as the Equal Pay Act, Paycheck Fairness Act and the Lilly Ledbetter Fair Pay Act of 2009. 4. Raise the minimum wage to a livable wage. This will disproportionately positively impact women -especially women of color - who are most likely to hold many of low-paying jobs in the caregiving and service sectors. 5. Explore comparable worth strategies [35]. These strategies are such that the rate of pay for a job would be determined by scoring the worth of the position rather than letting market forces set wages. This would address job segregation problems in which women and men do different work that require comparable skills and education, but where women’s work is undervalued by the market. A second set of policies needs to speak to the ways in which we support older adults in general and older women in particular. These policy strategies include: 1. Enact additional reforms to Social Security. a. First, change the current calculation model to compensate for the time women spend in caregiving and not penalize two-earner families. b. Raise the minimum Social Security payment.

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2. Increase the amount of low-income and affordable housing for older adults, including supportive housing, to address long-term care situations. 3. Increase Supplemental Security Income (SSI) benefits. At minimum, SSI payments should be doubled. Although we often believe that older adults are economically stable, as this chapter demonstrates, this is not the case for many older adults, especially women. Indeed women face economic challenges throughout their lives which for many follow them into old age. These challenges highlight the challenges of the American working class in general. In these troubled economic times, it would seem that the policy recommendations outlined above would be difficult changes to enact. However, this is also a time in which we are re-assessing the obligations and benefits of citizenship. The true circumstances and conditions of older women highlighted in this chapter should be part of that discussion. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

U.S. Census Bureau. The Older Population in the United States: 2012 [data on the internet]. , Washington, D.C. U.S.: Census Bureau 2012. [cited 2015 Jan 28]; Available from: https://www.census.gov/population/age/data/2012.html

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Administration on Aging, Administration for Community Living, and U.S. Department of Health and Human Services. A profile of older Americans: 2012 [report on the internet]. , Washington, D.C. U.S.: Administration on Aging, Administration for Community Living, and U.S. Department of Health and Human Services 2012; p. [cited 2015 Jan 29];16. Available from: http://www.aoa.gov/Aging_Statistics /Profile/2012/docs/2012profile.pdf

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Administration on Aging, Administration for Community Living, and U.S. Department of Health and Human Services. Profile of older Americans: 2013 [report on the internet]. , Washington, D.C.: Administration on Aging, Administration for Community Living, and U.S. Department of Health and Human Services 2013; p. [cited 2015 Feb 13];17. Available from: http://www.aoa.acl.gov/Aging_Statistics/Profile/2013/Index.aspx

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[4]

Federal Interagency Forum on Aging-Related Statistics. Older Americans 2008: Key indicators of well-being [data on the internet]. , Washington, D.C.: Federal Interagency Forum on Aging-Related Services 2008. [cited 2010 Mar 20]; Available from: http://www.aoa.gov/agingstatsdotnet/ Main_Site/Data/2008_Documents/OA_2008.pdf

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Federal Interagency Forum on Aging-Related Statistics. Older Americans 2012: Key indicators of well-being [data on the internet]. , Washington, D.C.: Federal Interagency Forum on Aging-Related Services 2012; p. [cited 2015 Jan 30];17. Available from: http://www.agingstats.gov/agingstats dotnet/Main_Site/Data/Data_2012.aspx

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Holden KC. Poverty and living arrangements among older women: are changes in economic wellbeing underestimated? J Gerontol 1988; 43(1): S22-7. [http://dx.doi.org/10.1093/geronj/43.1.S22] [PMID: 3335757]

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Retired Persons. , 2013. [cited 2015 Feb 9]; Available from: http://www.aarp.org/content/dam/aarp/research/public_policy_institute/econ_sec/2013/sources-of-income-for-older-americans-2012-fs-AARPppi-econ-sec.pdf [17]

Fischer J, Hayes J. The importance of social security in the incomes of older Americans Institute for Women’s Policy Research. , 2013. [cited 2015 Feb 12]; Available from: http://www.iwpr.org/publications/pubs/the-importance-of-social-security-in-the-incomes-of-older-americans-differences-by-gender-age-race-ethnicity-and-marital-status

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CHAPTER 4

Healthcare Disparities and Older Women Jeanne E. Sokolec* School of Social Work, Loyola University Chicago, USA Abstract: Healthcare disparities in the United States have increasing become a concern in relation to healthcare outcomes, as well as to social justice issues. These disparities are reflected in statistical differences in healthcare outcomes for different population groups. In addition more recognition is being given to the role of factors influencing health in general. Older women are a subset of those experiencing disparities in access and differential care and many of the disparities are outcomes of the socio-cultural aspects of health. Two areas of inquiry regarding older women and their healthcare (1) are the differences between men and women, generally and more specifically older men and older women and (2) differences in healthcare between younger and older women. This discussion has implications for the practice of medicine, especially in the field of gerontology, as well as for social workers who advocate for individual clients as well as for programmatic and policy changes. This chapter will discuss some of these issues.

Keywords: Healthcare, Health disparities, Older women. INTRODUCTION Healthcare disparities among older women are a subset of disparities that exist between gender, racial/ethnic and socioeconomic groups. Disparities in healthcare are generally defined as statistical differences between populations on selected measures that are deemed measureable benchmarks for assessing issues of access (gaps in care) and quality of care. For groups experiencing issues of access and differential care, it is not their healthcare issue per se that contributes to the disparity but rather other variables such as race/ethnicity, socio-economic status Corresponding author Jeanne E. Sokolec: School of Social Work, Loyola University Chicago, USA; Tel/Fax: 312.915.7019; Email: [email protected].

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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and gender. The presence of more than one of these variables has been referred to as “multiple jeopardy” [1]. Gaps in access to care and differential care can lead to healthcare outcomes that are potentially harmful for individuals and when reaching significant proportions, for a specific group of individuals. In the United States, the National Healthcare Disparities Report (NHDR) [2] is the primary document for the study of healthcare disparities. It is published yearly by U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality (AHRQ). When data are available, the Report typically shows contrasts by: Race— Caucasians with non-whites Ethnicity—Hispanics compared with non-Hispanic Whites Income—Poor, near-poor, and middle-income people compared with highincome people. Education—People with less than a high school education and high school graduates compared with people with any college education. Geographic location—People who reside in micropolitan areas are compared with metropolitan areas. Within metropolitan areas, people who reside in large central, large fringe, medium, or small metropolitan areas are compared with metropolitan (total). The Report also identifies “priority” populations and examines disparities “in quality of and access to health care” among recent immigrant and limited-Englishproficient populations; women; children; older adults; residents of rural areas; individuals with disabilities and special health care needs. Gender disparities are also documented and can be seen as a covariate of race/ethnicity and socioeconomic status. Older women can be seen as a subgroup of the gender covariate. Social epidemiology is a newer field within epidemiology that is specifically concerned with the “social characteristics or psychosocial risk factors associated with patterns of disease within and across populations” [3]. Healthcare disparities can be found in attitudes about health in different populations, in actual access to healthcare services, in access to “quality” healthcare and in actual treatment for health conditions. Within each of the steps to healthcare, the causes for disparities

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occur on several levels: the patient, the provider and the healthcare system. For example, having or not having health insurance is a systemic condition which in the United States is generally provided by or obtained through one’s employment. It is those in minority groups who often do not have the type of employment or out-of –pocket funds to purchase insurance. Women have traditionally been dependent on their spouses for health insurance. At the provider level, attitudes about population groups and cultural awareness effect how illness is perceived and treated by healthcare providers. At the patient level, health behaviors have an impact on general health and chronic health conditions. Socio-economic status, because healthier food is generally more expensive, has an important impact on health behaviors such as eating healthier food for conditions such as diabetes or avoiding obesity. This chapter is concerned with a specific group within these broader statistics: older women and more specifically older women v. older men and comparisons within the older women subgroup by race/ethnicity and income. THEORIES OF “HEALTH” Healthcare needs to be seen in the larger context of health defined by the World Health Organization as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” [4]. The National Wellness Institute now recognizes eight “dimensions,” or essential life areas which collectively comprise the wellness (well-being) of all human beings: spiritual, emotional, intellectual, physical, cultural, occupational, social, and environmental [5]. By expanding the concept of health beyond the physical and/or disease reinforce the importance of health and by implication suggest the potential consequences of disparities. Again using a broad lens, health care is the maintenance of the various dimensions of health including mental and social wellbeing. While there may be agreement, at least among organizations such as the World Health Organization and other health-related institutes, about the definition of health, there are larger questions that relate specifically to the details of health care provision.

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HEALTHCARE AND OLDER ADULTS It is important to view older women in context of the larger cohort of older adults including men. The John A. Hartford Foundation [6] reported that older adults today are an increasing and diverse group whose life expectancy is longer than ever before with women remaining the majority of adults age 65 and older, especially among those 85 and older. The report Healthy America 2010 [7] reported that there are substantial differences in life expectancy among different population groups within the United States. For example, women outlive men by an average of 6 years. White women currently have the greatest life expectancy in the United States and the life expectancy for African American women has risen to be higher today than that for white men. People from households with an annual income of at least $25,000 live an average of 3 to 7 years longer, depending on gender and race, than do people from households with annual incomes of less than $10,000. Before addressing the issue of disparities among women within the older adult population, it is important to note the general issues of healthcare and older adults – What are the healthcare needs of older adults and how are these needs different than younger adults? The Hartford Foundation [6] also reported that older adults use more health care services than any other age group. Hearing and vision impairments are often present and difficulties in walking are not infrequent. Alzheimer’s disease and other forms of dementia increase with age. An estimated 5 million older adults over age 65 have symptoms of depression that put them at risk for developing major depression. As older adults age, they often require increasing assistance with activities of daily living as well as negotiating the complexities of the health care system. Older adults often take several prescription medications daily especially if there are multiple health conditions present and see multiple physicians in different specialties. With the increase in longevity, differences are now seen between older adults over 65 and those over 85 in the number of chronic illnesses. In addition, the socio-economic status of older adults was found to suffer from limited incomes with 40% either poor or nearly poor compared to 32% of the

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general population [6]. Women comprise the majority of those over sixty five and older and this number increases over the age of 85. The socio-economic status of older women compared to men is worse with women generally receiving lower social security payments due to a lifetime or lower wage levels and for previous generations less time in the work force due to child care and/or care giving to older parents. The Hartford Foundation [6] reported that “twice as many women as men 65 and older are poor.” Not surprisingly, older adults within the African American and Latino populations are poorer than their white counterparts. SOCIAL DETERMINANTS OF HEALTH From a gender point of view, two areas of inquiry arise: (1) differences in health care between men and women in general and then more specifically differences between older women and older men and (2) differences in health care between younger and older women. In addition, age as a stand-alone variable is shown to be a factor in healthcare among all older women. The following section will briefly look at some of the data. Differences between Men and Women Gender differences in the quality of healthcare between men and women are documented. In 2007 The U.S. Department of Health and Human Services, Office on Women’s Health (OWH) [8] commissioned a literature review to provide an up-to-date review of effective sex- and gender-based systems/models of healthcare. One of the questions addressed in this review was: What key sex and gender differences exist in the current healthcare system structure, including reimbursement mechanisms, content of and access to appropriate care, quality of care, and patient safety? The authors of the report, Brittle and Bird, concluded that: women are disadvantaged in both access to care and in the quality of care they received which then results in poorer outcomes. Access limitations could be grouped into monetary and time issues. And while women appeared to be more amenable to preventative services than men, treatment for acute conditions was poorer in quality. One reason for gender differences in treatment of acute conditions may relate to the historic lack of women in medical research studies. Only recently has there been acknowledgment that the same disease may evidence

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itself differently in men and women as well as there being the need to measure differences in the effectiveness of the same medication by gender. Also, women tell stories of how their medical complaints are interpreted as “emotional issues” without further diagnosis. As women become older, these same gender issues follow them into health care during their older years. Differences between Younger and Older Women Health conditions and health needs are obviously different between younger and older women. The UCLA Center for Health Policy Research [9] reported that “women ages 50-64 are more likely than women 18-49 to report they are in fair to poor health and have a health problem that places limitations in their daily activity. Kosiak et al. [10] reported that as of 2001 there was a discrepancy between the focus on younger women, especially those of childbearing age, and older women. Even within specific health issues such as breast cancer, disparities have been found in treatment between women under and over 70 years of age [11]. What is not clear in these types of statistics is whether differences in treatment aree due to differential recommendations by doctors and thus a woman not knowing all of her options or older women making different decisions about the type of treatment they want in comparison to younger women. For example, are women over 85 less likely to opt for chemotherapy than younger older women? But with women comprising a significant majority of older adults, it is reasonable to expect that there should be an increasing focus on the health and healthcare of older women. One of the contributing factors to the lack of focus has been the assumption that many of the health complaints of older adults are just the normal course of events as one ages. This myth is slowly being eroded as variations among older adults in all dimensions of their lives are being recognized. Given the usual health effects of aging as well as development of more than one chronic condition, the issue of health insurance becomes important as women as age. Among the women studied by Wyn and Peckham [9] in the UCLA research the uninsured rate in California between women 18-49 and 50-64 were not significantly different but there were “striking differences among subgroups of

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women ages 50-64” with coverage varying by income. As might be expected, obtaining medical care varied by health insurance status. Racial/Ethnic Disparities among the Health Care of Older Women The Women of Color Health Data Book [12] reported that elderly women of color share with all elderly women several characteristics that influence their access to health care: ● ●

●

First, elderly women of color outnumber elderly men of color. Second, elderly women of color are more likely to be widowed than are elderly men of color. These differences are striking among even the younger-old (65 to 74 years), but become more pronounced for women of color in older age groups. Widowed women often are impoverished because of the loss of the financial support of their husbands. Among unmarried women 65 years of age and older, black and Hispanic women are more likely than white women to be poor or near poor. Third, the longer women of color live, the more likely they are to be affected by chronic illness, disability, and dependency, as is true among all elderly women.

In addition to the characteristics shared with all elderly women the Data Book stated that: the health of elderly women of color reflects the cumulative effects of living in a society in which they often faced disadvantages because of their color. These disadvantages are reflected in limited resources available throughout their lives to meet health care and other needs. Socioeconomic status is indeed a notable factor in health differences between women of color and whites because many older women of color need to continue working to try to make ends meet. The need to continue working despite declining physical stamina and other health concerns adds to stresses experienced by these women that may ultimately manifest as health problems [12]. Twenty percent of the older adult population in the U.S. is considered to be members of minority groups which include African Americans, Asians, Hispanics and Pacific Islanders. Further, given the increasing diversity of the U.S. minority older adults are predicted to be 50% of the older adult population by the year

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2050. Aldridge’s et al. [13] study on mammograms among Hispanic and non-Hispanic women demonstrated the complexity of assessing disparities between racial/ethnic groups. The authors found that healthcare access factors such as having a regular source of healthcare and a personal physician improved mammographic screening rates for both groups of women. However, low socio-economic status and lack of regular healthcare were more prevalent among the Hispanic women. Regular healthcare is generally related to the cost of healthcare and having or not having insurance. Disparities are more easily explainable when there is a difference in the income levels and therefore money to spend on healthcare costs. However, Bryd et al. [14] found that “minority groups of elders received low quality of care even when variables such as insurance, co-morbidity, education, and socio-economic status were accounted for.” A poignant example of this is a statement by a well-educated and successful African American woman who said, “When I take my clothes off in the Emergency Room, I am like any other black woman.” The difficulty in correcting disparities is that there are personal, social and institutional factors that contribute to the disparities. On the personal level the prior experiences of the individual with the health care system will factor into their use of the system. Poor experiences are more likely to dissuade an individual from seeking health care assistance than experiences that have been helpful. Add to the personal level cultural issues that speak to the person about health and illness in general. Also on the personal level is the view of the physician-patient relationship. Older adults who are in their eighties and nineties have lived in a medical world where one did not question their doctor. So when their doctor now says to them, “Oh, this is just a part of getting old.” They are less likely to question the doctor further even when they feel he or she is wrong. Socio-Cultural Issues As suggested above, it is impossible to discuss health and healthcare disparities in general, specifically in regards to the elderly and more specifically older women without highlighting the socio-cultural aspects of health and healthcare. Hooyman

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and Kiyak [15] stated that the impact of any chronic condition appears to be mediated by the physiological changes that occur with age, the socio-cultural context including life-long racial, gender and class inequities and the person’s mental and emotional outlook with the development of chronic diseases linked to poor health status and lower levels of quality of life beginning in childhood. Hooyman and Kiyak [15] also reported that “Educational achievement moderates the effect of race on chronic disease and disability, especially among older women.” The effect of education appears to enhance awareness of and access to preventive services which may prevent acute conditions from becoming chronic and/or decrease the severity of the chronicity. However, the level of education achieved is often dependent on socioeconomic status which often determines where one lives and subsequently the quality of the school system and future educational achievement. An example of the impact of the availability of community resources is in the treatment of hypertension and diabetes. Hypertension is 1.5 times more likely in blacks than in whites and black v. white women have twice the rate of strokes. Hypertension can be controlled by lifestyle, including diet and appropriate medical intervention. In both diabetes and hypertension, exercise is often a component of the healthcare plan. Access to affordable exercise facilities and/or walkable communities may directly impact one’s ability to follow a prescribed exercise regimen. And once again, socio-economic status which is impacted by race partially determines the resources of a community. Community resources are even more important for the elderly whose incomes are limited and may have less flexibility to move outside their immediate neighborhoods. While race and ethnicity per se have a role in the existence of disparities, level of household income determines purchasing power for goods and services to meet basic needs and obtain other resources which in turn directly affect individual and family lifestyle. While government programs are available to assist meeting some basic needs, these programs do not fill all the gaps experienced by individuals. The relationship between income and other demographic factors such as gender as well as race/ethnicity is complex. For example, black and Latino elders are more likely to suffer from diabetes than non-Hispanic whites with diabetes being twice

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as common among women of color as in white women. Type II Diabetes is generally associated with diet and one’s diet is at least in part dependent on lifestyle which is in part determined by income. For adults of working ages, types of employment and income levels impact health insurance availability. During the current health reform debate, one group of major concern was the “working poor” who either did not have employer based health insurance or could not afford to purchase health insurance out-of-pocket. Level of income during one’s working years directly impacts the amount of social security one receives when they retire. Salganicoff [16] for The Kaiser Family Foundation has stated that “earning patterns that are shaped during their working years, when they earn about three quarters of men translate into lower income and assets in old age.” Thus in terms of healthcare disparities among older women, two factors appear to be clear: (1) historically men and women have had differential earning levels during working years with earlier generations of women having focused on caregiving and not worked at all outside the home and (2) historically there have been differentially income levels between white workers and workers of color. One reason has been level of education but another has been discrimination in the workplace. In a study of the self-perceived access to health care in a group of Medicare beneficiaries, Fitzpatrick et al. [17] concluded in part that “income is a strong predictor of access to health care in the elderly, independent of race.” Health Insurance Women in the U.S. typically receive their health insurance through employerbased systems either through their own work or that of their spouse’s plan. The type of health insurance and the services that it will reimburse directly affect the type of preventative and treatment care one can access. With the increasing recognition of the importance of preventative care, have some type of healthcare plan that covers preventative services makes a major difference in one’s current as well as future quality of health. Mammogram screenings are recommended so that breast cancers can be found earlier thus allowing less invasive treatments to occur. For those who are eligible for Medicare, a supplemental insurance policy is

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recommended to cover expenses not reimbursed by Medicare. The costs of supplemental policies are dependent on what is covered and to what extent. Those older adults with chronic illnesses requiring continual care, likely need more expensive supplemental policies. Medicare Part D – prescription coverage requires a separate policy paid for by the older adult. In addition there is the period of the “Donut Hole” when the insured must spend approximately $4500.00 out of pocket before coverage is resumed. While this can become a burden for both men and women, it is more burdensome for women who may be receiving less social security benefits, live longer and may have more chronic diseases requiring medications that may or may not be available in generic, less expensive forms. Geographic Considerations In diverse country like the United States discussions about specific populations have to include geographic considerations. The Henry J. Kaiser Family Foundation [18] has documented women’s health disparities by race and ethnicity at the state and regional level. The age group for their study was women between 18 and 64 years of age. It seems reasonable to then infer from this group the issues that will follow women into their older years. Twenty-five indicators of health and well-being were measured grouping them into three categories: (1) health status – general health status, diabetes, AIDS, obesity, (2) access and utilization, and (3) social determinants. The key findings from this report include: Disparities existed in every state on most measures with women of color having lower averages on most indicators, with some states having wider disparities. Interestingly, when disparities seemed smaller, both white and women of color were doing equally poor. Disparities in one category did not necessarily predict disparities in another. A key example of this was the District of Columbia where access to care was high but disparities were significant for indicators of health and social determinants. Each racial and ethnic group faced its own particular set of health and health care challenges. This last finding is important for not only analyzing

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disparities but also for practice. No racial or ethnic group is homogeneous and attempts to provide practices where “one size fits all” are likely to fail.

In 2008 the New York Times [19] referenced a study by researchers at Dartmouth University who examined Medicare claims AND found that “on a variety of quality indices, blacks typically were less likely to receive recommended care than whites within a given region. But the most striking disparities were found from place to place on a variety of quality indices, blacks typically were less likely to receive recommended care than whites within a given region. But the most striking disparities were found from place to place.” [italics added] For example, looking at the rates of mammograms in women 64 to 69 receiving screenings in 2004 or 2005, the country’s lowest rate for black women – 48% in California – was 24 points lower than the highest rate – 72% in Massachusetts. Applying these findings to older women the following can be inferred: (1) where the health status dimension is poor in younger ages, it is likely to remain poor in older years; (2) similarly, where younger women have reported low access and/or utilization of health care, the consequences of lack of prevention and treatment may lead to chronic issues in older years; and (3) the social determinants of health – household income, educational level, patterns of segregation – follow women into their older years. As discussed previously, household income in older years becomes a significant factor in health and health care. In sum, all demographic factors that contribute to a person’s health and well-being are operative when looking at healthcare and how it is delivered as well as its outcomes for different subgroups of older adults. While this chapter is focusing on healthcare disparities and older women, it would be unfair not to recognize that demographics such as race and socio-economic level do not also affect heaOthcare and its outcomes for older men as well. PRACTICE IMPLICATIONS FOR ADDRESSING DISPARITIES AMONG OLDER WOMEN

HEALTHCARE

Practice implications for addressing healthcare disparities among older women seemingly fall into four categories (1) changes within the practice of medicine; (2) programmatic changes within communities and in the delivery of healthcare;

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(3) policy changes that address socio-cultural issues on a macro level; and (4) social work’s involvement in reducing healthcare disparities Changes within the Practice of Medicine Healthcare disparities of all types are well-documented and now publicized with a number of groups working to address remedies. Medical research in the past was “gender neutral” assuming that the results from studies comprising most males could be generalized to females as well. VanDkye et al. [20] believed that this practice was not seen as leading to and maintaining disparities between males and females in healthcare and healthcare outcomes. Recognition of the problems within this practice led to the creation in 2006 of the NIH Research Priorities for Women’s Health. Among the themes of the priorities is “Health Disparities/Differences and Diversity.” Ideally this new paradigm of research will not only continue to focus on women as a distinct group but will also investigate sub groups of women with age cohorts being one discriminating factor. There is also increasing recognition that diseases present differently in women than men. Heart disease is the number one killer of women with coronary disease presenting at older ages in women and with women often not having the same type of symptoms. Given that African Americans have higher rates of hypertension and black women more strokes than white women recognizing gender differences and treating women accordingly has important implications of quality of life and longevity between genders as well as within gender. The Task Force on the Future of Geriatric Medicine of the American Geriatric Society [21] has stated among their goals that: Planning for healthcare delivery for the older age group should be aimed at the entire population of older persons but address the unique needs of individual patients. Thus, healthcare delivery must consider the full range of needs for the heterogeneous older population. Diversity in health and functional status, culture and ethnicity, and socioeconomic status must be recognized. Work towards achieving this goal would seemingly include gender related issues as well as the diversity within gender. Geriatric medicine is not required at all medical schools leaving physicians unable to diagnose and treat the unique conditions of older adults [9]. Culturally

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competent practice is now considered to be a component of quality care. According to Shoultz et al. [22] one way to better assure culturally competent practice is to “increase healthcare providers’ knowledge of diverse populations and developing policies and standards appropriate for all cultural groups….” Culture has traditionally been thought of as race and ethnicity but part of the educational process is to reconceptualize culture to include gender and the diversity within gender – women as well as men and age cohorts within each gender. Older medical professionals, who are use to reading research mainly focusing on males, may not be as aware of gender differences. Programmatic Changes within Communities and in the Delivery of Healthcare Healthy America 2010 [7] has highlighted the interconnectedness of factors influencing health and health outcomes. Changing structural issues that create the conditions for healthcare disparities are the most difficult of all changes to make due to their complexity and inter-connectedness of individual factors, community factors and systemic factors. At the level of the individual genetics and/or health related behaviors have important roles in level of overall health and potentially chronic illnesses. Aging brings on health issues but the severity and chronicity of these issues is dependent on genetics, health related behaviors, healthcare, and access to a variety of resources that promote health. Health related behaviors are in many ways dependent on access to healthcare and health promoting resources. For individuals affected by healthcare disparities, one area that has become seen an important factor in self- advocacy is “health literacy” which is the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services to make appropriate health decisions” [23]. Individuals and groups experiencing disparities are often those from groups with limited English proficiency. Thus, even when appropriate health services are provided, a functional level of literacy and understanding affects patient followthrough. Another micro level factor in obtaining appropriate health services is attitude about the doctor-patient relationship. Older generations have viewed their doctors

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as authorities with whom one didn’t question diagnoses and especially treatment recommendations. Although there is no hard data one hypothesis is that this subordinate position may have been especially true of women who again in previous generations had mainly male doctors. The paternalistic rather than interactive stance taken by doctors in general and male doctors towards women likely led to situations where even women who realized that something was amiss in their healthcare, did not raise questions. The good news is that the “attitude” towards patients is changing, especially with younger doctors, to a more interactive relationship as well the increasing numbers of female doctors in general medicine and specializations. Future research should investigate (1) whether interactional health services improves health and healthcare and (2) whether there are socio-cultural and socio-economic factors that impact the interactional nature of health services. At the meso level changes in healthcare delivery and changes within communities interact with micro level factors to reduce disparities and address the specific concerns of older women. Changes within communities are an interesting dilemma in that many communities within larger cities in the United States are racially and ethnically homogeneous for the main reasons of discrimination and economic factors. Poorer communities are less likely to have the level of resources both in quantity and quality. Community hospitals for example are not designed to address specialty health areas. There are more older women than older men and more women living alone which may skew gender statistics in some communities. Given all that has been said previously about gender differences coupled with socio-economic factors, some communities may have to take special care that they are able to be functional for older women who are along, poorer and have experienced racial/ethnic disparities in healthcare throughout their lives. Policy Changes that Address Socio-cultural Issues on a Macro Level The macro level includes all the major systems of society. On a macro level structural changes involve insuring that all schools are quality schools so that one’s educational background is not a hindrance to future achievements and income potential. Raising the minimum wage to a “living wage” has implications for immediate living conditions as well as social security when one retires. For

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women who have earned less becomes even more important. Other policy concerns include: ●

●

●

Long-term care is extremely expensive and not covered by Medicare. Since women tend to live longer than men and comprise the majority of those over 85 years of age, healthcare policymakers need to consider how to manage this cohort most of whom cannot afford to pay for long-term care out-of-pocket. Since cost is a factor in using preventative services such as mammograms, and more non-white than white women do not have health insurance nor can pay out-of-pocket, policies establishing resources for women without ability to pay or using insurance would increase early diagnosis and treatment which decreases late-stage treatment and acute conditions becoming chronic. In the report “Putting Women’s Healthcare Disparities on the Map” the authors state: “As the country becomes more diverse….There is also a growing recognition that problems differ geographically and effective solutions will need to address these challenges at federal, state, and local levels” [18].

Social Work’s Involvement in Reducing Healthcare Disparities Social work’s advocacy role can be active both at the micro level, advocating for individual clients but is also important at the mezzo and macro levels in educating healthcare systems about the issues of healthcare and women, especially older women. As in other helping disciplines, more students need encouragement to focus on older adults so that there are more knowledgeable professional advocates in gerontology. The John Hartford Foundation has provided a number of types of grants to schools of social work to increase the infusion of material on older adults into the curriculum. Having such a curriculum can incorporate both clinical and policy knowledge and skills about older adults and can also focus on sub-groups such as older women especially since older women comprise a significant number within the older adult category, especially over the age of 85 years. Social workers can also have a direct impact through working in and the field of public health. Powers and Faden [24] have posited that “public health is the social institution charged with promoting human welfare by bringing about a certain

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kind of human good, the good of health.” Accordingly to the National Association of Social Workers, “Public health social work practice uses a research-based epidemiologic approach to identify and address social problems that affect the health status and social functioning of population groups. Public health social work emphasizes interventions that address primary prevention and includes practice at multiple levels including individuals, groups, communities, and populations” [25]. SUMMARY Data exists that shows not only the differences in various aspects of life for men and women but also in the disparities in healthcare between gender, made even more complicated by the intersectionality of other demographic factors such as race. If health care disparities are viewed from a social justice perspective, the question arises as to whether those groups who have suffered from disparities need some compensatory attention. Moy and Dayton [26] have supported gender based research from the point of view that “understanding the diverse health needs and uneven distribution of health services across populations can help to target interventions where they are most needed” Social workers are in the position to attend to these issues on micro, mezzo and macro levels including more targeted research on women in general and as the female population ages, research to document health issues in older and old adulthood. CONFLICT OF INTEREST The author confirms that author has no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

Henderson J, Henderson LC. Public health and aging. In: Coreil J, Ed. Social and Behavioral Foundations of Public Health. Los Angeles: Sage 2010; pp. 223-43.

[2]

U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality. National Healthcare Disparities Report. Washington, D.C. 2009.

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[3]

Coreil J. Social epidemiology In: Coreil J, Ed. Social and Behavioral Foundations of Public Health. Los Angeles: Sage 2010; pp. 45-65.

[4]

Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. The Definition has not been amended since 1948.

[5]

Hettler B. The six dimensions of wellness model. National Wellness Institute, Inc. 1976.

[6]

The John A. Hartford Foundation. Annual Report 2009. Complex Needs of Older Adults. Retrieved from: http://www.jhartfound.org/ar2009html/ComplexCare_ Needs_of_Older_Adults.html; July 30, 2010.

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Centers for Disease Control and Prevention. Healthy America 2010.

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Brittle C, Bird CE. Literature review on effective sex- and gender-based systems/models of care. Washington, D.C.: Uncommon Insights, LLC 2007.

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Wyn R, Peckham E. Health and health care access among California women ages 50-64. Los Angeles, CA: UCLA Center for Health Policy Research 2010.

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Kosiak B, Sangl J, Correa-de-Araujo R. Quality of health care for older women: what do we know? Women Health Issues 2006; 16(2): 89-99. [http://dx.doi.org/10.1016/j.whi.2005.01.003] [PMID: 16638525]

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Davis C. Unfair care. Nurs Older People 2007; 19(8): 12-3. [PMID: 17972777]

[12]

Office of Research on Women’s Health, Office of the Director, National Institutes of Health. Women of Color Health Data Book 2006.

[13]

Aldridge ML, Daniels JL, Jukic AM. Mammograms and healthcare access among US Hispanic and non-Hispanic women 40 years and older. Fam Community Health 2006; 29(2): 80-8. [http://dx.doi.org/10.1097/00003727-200604000-00004] [PMID: 16552286]

[14]

Byrd L, Fletcher A, Menifield C. Disparities in health care: minority elders at risk. ABNF J 2007; 18(2): 51-5. [PMID: 17608287]

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Hooyman NR, Kiyak HA. Social Gerontology. 9th ed., Boston: Allyn & Bacon 2011.

[16]

Salganicoff A. Health Care and Long-Term Care Policy: Concerns Facing Older Women. The Henry J. Kaiser Family Foundation 2008.

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Fitzpatrick AL, Powe NR, Cooper LS, Ives DG, Robbins JA. Barriers to health care access among the elderly and who perceives them. Am J Public Health 2004; 94(10): 1788-94. [http://dx.doi.org/10.2105/AJPH.94.10.1788] [PMID: 15451751]

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James CV, Salganicoff A, Thomas M, Ranji U, Lillie-Blanton M. Putting health care disparities on the map: Examining racial and ethnic disparities at the state level. The Henry J. Kaiser Family Foundation 2009.

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Sack K. Research finds wide disparities in health care by race and region 2008. The New York Times

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June 5, 2008. http://www.nytimes.com/2008/06/05/health/research/05disparities.html [20]

VanDyke E, Gerbert D, Herman LM, et al. Paradigms shifts in the approach to women’s health care. J Am Acad Physician Assist 2006; 19(10): 50-5. [http://dx.doi.org/10.1097/01720610-200610000-00011]

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Racz M. Caring for older Americans: the future of geriatric medicine. J Am Geriatr Soc 2005; 53(6): 245-56. [PMID: 15963180]

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Shoultz J, Fongwa M, Tanner B, Noone J, Phillion N. Reducing health disparities by improving quality of care: lessons learned from culturally diverse women. J Nurs Care Qual 2006; 21(1): 86-92. [http://dx.doi.org/10.1097/00001786-200601000-00016] [PMID: 16340694]

[23]

Health Research and Educational Trust. Editorial: Promoting health care equity: Is health literacy a missing link? Health Serv Res 2010; 897-903.

[24]

Powers M, Faden R. Social Justice. New York: Oxford University Press 2006; p. 81.

[25]

National Association of Social Workers. Public health social work. Available from: http://www.naswdc.org/research/naswResearch/PublicHealth/default.asp.

[26]

Moy E, Dayton E. Frontiers in gender-based research: health care quality data. Womens Health Issues 2007; 17(6): 334-7. [http://dx.doi.org/10.1016/j.whi.2007.08.002] [PMID: 17951071]

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CHAPTER 5

Why Doesn’t Anyone Ask? Myths and Taboos about Older Women and Sexuality Marcia Spira*, Constance Sheehan and Alysha Primmer School of Social Work, Loyola University Chicago, Chicago, USA Abstract: The older adult population in the US age 65 and older expected to grow from 12.9% of the population in 2009 to 20% by 2030 (Administration on Aging, 2011) [1]. The increasing proportion of Baby Boomer older adults are expected to live longer and attain a higher quality of life, dependent on improved management of health issues. However, there is a paucity of research in the area of sexual health in older adulthood, especially concerning older women. The reluctance to consider the conversations around sexuality may have direct consequence on health and well-being, Negative societal stereotypes, including a prevalent view of diminishing physical attractiveness, perpetuate false assumptions about aging and sexuality. Women in particular seem vulnerable to expectations of society people that a disengagement from sexual interest and acceptance of asexuality is normative. This myth that older adults are not sexually active individuals may impact the level of medical attention that they receive for issues related to sexual health. Many healthcare professionals are reticent to broach the subject of sexuality with their older adult patients. In this paper we discuss how societal and personal attitudes toward sexual behavior and aging perpetuate myths and taboos about sexual health and overlook the significance of sexuality identity and need for physical and emotional intimacy among older women.

Keywords: Older women, Sexuality, Sexual health, Taboos. SEXUAL BEHAVIOR IN OLDER WOMEN A recent study in the New England Journal of Medicine that surveyed over 3,005 adults between the ages of 57 to 85 years old found that while sexual activity may Corresponding author Marcia Spira: School of Social Work, Loyola University Chicago, Chicago, USA; Tel/Fax: 312-915-7645; Email: [email protected]. *

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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decline with age, almost half of individuals age 65 to 74 remain sexually active, as well as 26% of those aged 75-85. In the latter group, 54% reported having sex at least two to three times a month and 23% reported having sex once a week or more (Lindau et al., 2007) [2]. In another study, Gott and Hinchliff (2003) [3] measured the level of importance of sex for older adults (aged 50-92 years old). Using both qualitative and quantitative data they found that participants who had a sexual partner deemed sex to be of at least some importance with many rating sex as “very” or “extremely” important. The importance of sexual activity is not only physical, for many older adults it is also psychological in nature and is intertwined with feelings of intimacy. The need for connection and intimate contact is a human need that is sustained throughout the life cycle. In fact studies have shown that while the frequency of intercourse tends to decline with age, satisfaction with sexuality may not be affected (AARP, 2005) [4]. Laumann and colleagues [5] reported on the quality of sexual behavior among older adults. Subjective fulfillment was found to be associated with an increased sense of happiness and well-being; maintaining a sexual relationship is associated with love, intimacy and closeness that can further improve older people’s general well-being by DeLamater & Moorman [6]. Sexual expression is not only defined as vaginal penetration; it includes words of affection, activities and gestures involving touching, holding hands, kissing, and hugging. Engaging in these types of behaviors with a partner provides opportunities for older adults to express warmth, caring and affection and to experience intimacy by Langer [7]. The findings in a study by Ginsberg, Pomerantz and Feeley [8] support this notion of sexual preferences and behaviors of older adults. They surveyed 166 participants, aged 60 years and older and found that a majority preferred experiences such as touching/holding hands (66.9%), embracing/hugging (72.5%) and kissing (67.9%) on a regular basis. Sexual experiences such as mutual stroking (62.4%), masturbation (80.1%) and intercourse (66.4%) were less desirable. Regardless of how older adult women may wish to engage in sexual activity it should be recognized that sexuality continues to be an essential part of their lives and continued wellbeing [2]. For older women, sexual activity is still an important means for expressing love and caring [9].

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BIOLOGICAL REALITIES Normal physiological changes such as decreased vaginal secretions and flattening of the vaginal epithelium in women, and delayed or diminished sexual response are common [8]. However, the impact of these variables on sexual activity in women is not entirely clear [10]. Further health related issues in the form of normative biological changes like the effects of menopause for women, and prostate changes and erectile dysfunction for men, can also affect the level of sexual functioning for older adults. Apparently women treated with a transdermal testosterone patch and given lubricants to combat vaginal drying do report higher sexual satisfaction [11]. Prior functioning and relationship factors are more important than hormonal determinants in female sexual activity in midlife. The idea of older adults engaging in sexual activity is still a rather taboo topic in our society. This stigma limits the willingness to engage in conversations for fear of exposure to judgment. Consequently many sexually transmitted diseases go undetected. Considering the rise in sexually transmitted infections (STI’s) including human immunodeficiency virus/ acquired immune deficiency virus (HIV/AIDS) [12] for older adults in recent years, older adult sexual health is no longer a topic that can be ignored. Approximately 10% of AIDS cases are among people older than 50. Many health care providers lack an awareness of the risk of HIV/AIDS in the elderly population [13]. Additional research is needed to determine the extent of the problem and how health care providers can best serve their older patients’ needs. BIOPSYCHOSOCIAL CONSIDERATIONS Generally, sexual activity is associated with overall health [14]. While illness may be an interference with sexual health and lack of sexual health may be a symptom of illness, the focus on sexual dysfunction as a symptom of women’s lack of wellbeing is often obscured or ignored, However, sexual activity can lead to depression or withdrawal [2]. The biological changes that occur in older women’s sexual function intersect with a social and psychological context. Weeks [15] claims that negative stereotypes and cognitive distortions foster misconceptions of sexuality in older adulthood. It

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is probable that the negative attitudes are even more pronounced for women since so much of female identity is lodged in physical beauty. Women who have organized their sexual identity around physical appearance often feel significant loss as they age. Women internalize the beliefs of society that older adulthood is not the time for sexual expression. Therefore the experience and longing for sexual satisfaction may be accompanied by guilt and shame that others will be judgmental. However, object relations theorists recognize that the need for connection is apparent throughout the life span and older adulthood is no exception. As Summer’s [16] states, “sexuality is determined not by its physiological function, but by its ability to express intimacy.” It is this fulfillment of need for intimacy that seems related to a validation and realization of self throughout the older years, despite the reality of physical change. Self-perception and motivation are critical variables in sexual expression as well. Social psychologists attest to the theory that a woman’s view of herself, her attitudes toward sex, her feelings and willingness to discuss sexual matters may be dependent on their observation of partner interest and behavior. Self Perception theory indicates the reliance women have on the responses of others to their behavior. Early schemas and attributions that limit her perception of her role and sexual freedom may preclude full and equal expression of sexual interest [17]. The cohort or generation in which the older woman developed influences the degree of freedom around sexual expectations and provides a context for selfperception and sexual expression. Having grown up in an era of nonconformity, greater sexual freedom, and widely available and accepted contraception methods, Langer [7] suggests that this generation of older adults will continue to view sexuality in more liberal terms than previous generations have. Those aging women who are part of the Baby Boomer generation, participating in the wave of the women’s liberation may have a stronger sense that sexual expression is normative and freedom or at least desire to discuss issues surrounding it [17]. However, there is a danger also in this generation of women feeling pressured to be more “sexual,” and questioning their more moderate internal experiences. Motivation to participate and have discussions is also a mediating factor [18] and motivation to please may in fact overcome lower physiologic desire. Other factors must be considered as the presence of mood disorders and the pharmacologic

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treatments that may lower sexual interest. If sexual activity is regarded as taboo, non-existent or unimportant, complaints of the side effects of mediation may be ignored by health care professionals. Continued engagement in sexual activity is related to increased self-esteem and relational engagement [19]. Maintaining a sexual relationship is associated with sustained intimacy and closeness that can further improve older people’s general well-being [18]. Sex and sexuality continue to be an important part of life for many older adults, preventing social disengagement and decreased incidents of depression [20]. There are several considerations regarding women’s opportunity to engage in sexual activity. It is a social reality that women have more limited availability of partners for intimate contact [21]. Lindau et al. [2]. found that a total of 78% of men vs. 40% of women 75 to 85 years of age, reported having a partner for an intimate relationship. This difference may be explained by several factors, including longer life spans for women, fewer women remarrying after the loss of a spouse, and the age structure of marital relationships among older adults (men are, on average, married to younger women [22]. The second major reason for lack of sexual relationships is due to poor physical health in either partner; health issues such as arthritis, heart disease, stroke, cancer and diabetes can all have a negative impact on an individual’s interest and ability to perform sexually [23]. ATTITUDES THAT LIMIT THE CONVERSATION The facts are that older women are often sexually active or desire to be sexually active and may need support to discuss any difficulties they encounter. Sexuality has to be recognized as part of a woman’s’ identity well beyond the early and middle adult years. Ageism and misinformation may contribute to the reluctance to talk to women about their sexual needs and experiences. Winn [24] reports that women are actually more able to converse about sex through older years. Despite this willingness of women to speak about their sexual experiences, the likelihood of only responding to questions of sexuality when asked should be subject for further research. As can be inferred from the current research reports, not speaking about sexual concerns inhibits recognition of potential source of anxiety

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or depression, contributes to an oversight in understanding physical symptoms and may be an indication of underlying health concern. Negative sociocultural and older adult attitudes towards sexuality and aging can influence whether or not older adults engage in sexual activity. Traditionally negative sociocultural views about older adults and sex revolve around the image of physical beauty as the measure of sexual desirability, for older adults this focus on outward appearances may cause them to feel less than sexually attractive and abstain from engaging in sexual activities. This, coupled with historically repressive views of sexual behaviors and feelings and the lack of sex education that were often instilled in older adults as children, help to foster a sense that engaging in sexual practices past a certain age is not acceptable [7]. The reluctance for health care providers and clinicians to engage in conversation of these matters seems to be a frequent complaint of many women. When older women do face the challenges with sexual functioning it is important to discuss whom they are turning to for help. Often times, their general medical practitioner (GP) is identified as the primary source of assistance [25]. Reasons cited for initially consulting a GP included a good relationship with their GP, satisfaction with past treatment, and not being aware of other sources of help [25]. Hirayama and Walker [26] identified significant others and members of social support networks (including family members that are not significant others) as other potential confidants that may help ease stress associated with issues related to sexuality for older adults. In their study they found that these confidant relationships did not have a specific effect in lessening the stress associated with sexual dysfunction, but that they did help to moderate the ill effects of stress on the participants psychological wellbeing [26]. They hypothesized that what was more helpful than actually discussing their sexual problems with a confidant, was finding comfort in knowing that they have someone that they could confide in about such problems [26]. The ability to discuss issues related to sexuality, whether they are medical or psychological in nature, with a trusted confidant is paramount to the continued sexual health of older adults. The conversation in and of itself is a source of intimate connection for many women. The need for an authority figure to validate

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the normalcy of desire can be extremely important in the sense of well-being. Unfortunately, many medical and mental health professionals do not consider the fact that older adult patients may enjoy a healthy sex life and neglect to address the topic of sexuality with them at all [2]. In a 2004 qualitative study, Gott, Hinchliff, & Galena [27] explored GP attitudes towards discussing sexual health with older adult clients and discovered that there are many factors that inhibit GP’s from broaching this subject with their patients. The primary identified reason that GP’s gave for lack of attention to older adult’s sexual health was that they did not perceive sexual health as something that was relevant for older adults. Other factors included feelings that older adult sexuality was more of a private concern and GP’s did not want to offend their patients by asking them about their sex life and many GP’s also felt a general level of discomfort in discussing sexual health with older adults, held biased views about sexuality and aging, and had not received adequate training in this area [27]. These barriers to care are not only present for medical professionals; they also exist for the older adult patients themselves. Even though the identified primary person of contact for older adults with sexual health concern was their GP, many do not seek treatment at all and if they do, are hesitant to initiate conversations about sexual health issues with their GP. Reasons cited for lack of engaging in treatment seeking for older adult patients include feeling that sexual problems are embarrassing and shameful, a preference for a GP that has similar personal characteristics to themselves (i.e., same age and/or gender), and a recognition of negative societal attitudes about sex and old age that leads older adult patients to believe that their GP would disapprove of them engaging in sexual acts [3]. These barriers to treatment seeking for older adult patients are not dissimilar to the reasons that GP’s have for failing to inquire and/or address the subject of sexual health with their older adult clients. This lack of communication from both sides regarding older adults and sexual health has helped to contribute to the rise in STI’s including HIV/AIDS in the older adult population. There has been little published regarding specific statistics of STI’s in the older adult population, one can theorize that this is mainly due to the focus on adolescents and younger adults as the primary population affected. By comparing information from the Centers for Disease Control and Prevention (CDC) in their annual sexually transmitted

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disease reports from 2000 to 2010, we see a major increase in both reported cases of syphilis, from 885 to 2,549, and chlamydia, 6,711 to 19,629 for persons aged 45 to 64 years [28]. HIV/AIDS in the older adult population has been more well documented and the CDC reports that in 2005 15% of all new HIV/AIDS diagnosis in the United States were for persons aged 50 years and older and that this age group accounted for 24% of all persons living with HIV/AIDS, a 17% increase from 2001 [29]. These numbers have considerable implications for the older adult population in terms of effects on health, treatment, transmission to others, impact on quality of life, longevity, and healthcare costs. Ultimately what we have here is a health issue that has serious ramifications and yet health professionals and patients alike seem not to want to discuss it. How then can we begin to change the perception of the asexual older adult in order to facilitate conversations that will lead to more proactive screening, assessment and better overall sexual health care for this population? Considering that older adults identify their GP as the primary person to contact regarding sexual health issues, the shift in attitudes surrounding older adult sexuality must begin with those in the healthcare field. Awareness of sexual health care issues, as well as accurate and factually based information on the physical and psychosocial concerns associated with sexual attitudes and behavior are important additions to the discussions on health between doctors and patients. Awareness of sexual health issues plays a key role in ensuring that patients are being appropriately assessed and screened for things like STI’s and HIV/AIDS, but also helps to identify potential preventative measures and future treatment options. Health care professionals must be sensitized to identify the psychosocial determinants of poor sexual health. These may include negative stereotyping and judgment of women’s desire for physical and emotional intimacy. The reality of limited opportunities for women to meet new partners must also be recognized. Education must address the barriers to discussions about sexual health that stem from personal biases and negative stereotypes held by some GP’s. Education and awareness about sexuality is not limited to those in the healthcare field, but to the older adult patients themselves. Accurate information t must be made available to older adults in order for them to gain knowledge about sexuality and sexual health. As previously stated, many older adults consider sexual problems to be

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shameful and/or embarrassing and avoid discussing them with their GP. By educating older adults about their own sexuality we can help to normalize the issue and make it less intimidating to ask questions or to initiate a conversation with healthcare professionals. Patient sexual health education could also help to address lack of knowledge about safer sex practices like condom use and STI testing and potentially shift views that aging and sex are somehow incompatible. CASE STUDIES Often older women present to clinical social workers and other clinical service providers with various symptoms and complaints that often center on discontent in relationships, resulting in lowered self-esteem, despair and somatic complaints. The following three vignettes are representative of the type of difficulties created by dysfunctional self-perceptions, ageist attitudes and limited conversations regarding sexual health. Rosa presented at 76 with complaints of anxiety and depression. She was a physically healthy, intelligent, attractive woman. She had been married for 52 years, 2 grown children and 4 grandchildren who visited very infrequently. She described her life, however, as very busy, full of social relationships and opportunities for travel. However, she reported being very lonely, as if her life did not matter to anyone. She repeatedly asked the proverbial question, “is this all there is?” When we explored her potential wishes to add “more” to her life, she stated without hesitation that she wanted more intimacy in her life. She “had been a beautiful woman,” and she felt her “beauty opened so many doors in her life.” However, she suffered great loss as she noticed her body and face “becoming distorted and ravaged (by age).” She complained that her husband did not seem interested in giving her the hugs she wanted (though he was described as often attempting to be affectionate toward her). She felt embarrassed and wondered if something was “wrong” with her. She acknowledged she rejected his overtures toward her. Rosa seemed profoundly affected by perceived losses of the attributes she felt represented her “sexual self.” She had great difficulty accepting the physical changes of aging and consequently seemed unable to accept the affection of her partner. It was as if her internal need could not be fulfilled in the context of the external reality of her aging profile. She painfully confronted the internalized

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view that intimacy was only available to the physically beautiful (young) and limited her own opportunities for love as a result. Clinical interventions, helping her manage the “losses” and adapt to the realities of aging, while validating the continued need for human connection helped her retrieve a sense of personal and sexual fulfillment. Sylvia at 82 was widowed. After four years of living on her own, she moved into an assisted care facility, stating she wanted to go in voluntarily before someone made the choice for her. Sylvia had no children and was the only surviving member of her sib ship of two sisters and a brother. Once settled into her new community, Sylvia met a man 4 years her junior. She and Roger began to share meals, books and soon nighttime meetings. The staff observed the burgeoning relationship with Sylvia. One nurse admonished her that she should “behave herself.” Other staff members began to snicker when they would observe Sylvia dressing up for her “dates,” disappearing into Roger’s room after dinner each night. Some of the staff began to tease Sylvia, affectionately calling her “Cougar Mom.” Sylvia was humiliated. She stopped going to Roger’s room, but also stopped going to the common dining room, believing everyone was talking about her. She became withdrawn, isolated and once again alone, as she had been before moving to the facility. The view that her feelings were pathological and “wrong” stimulated guilt and shame, creating a greater sense of loneliness and disconnection from the community she thought were her “family.” Sylvia represents the many older residents of senior living facilities with limited recognition of the need for social and intimate relationships. Sylvia had an easily diminished sense of self in the face of judgment from others in her environment. She could not sustain the harsh effects of the teasing and withdrew into a state of self-contempt. When she was referred to a clinical social worker and encouraged to tell her story, she was once again able to recognize her very normal need for intimacy. The third story is about Evelyn, age 81, an ardent activist and former schoolteacher. Evelyn made frequent visits to her primary care physician, a 42year-old man who took over the practice from a general practitioner Evelyn had known for 50 years. She came to therapy with a clinical social worker with the chief complaint of not being able to talk to her doctor about her troubles. She was

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embarrassed and felt he really didn’t want to hear what she wanted to talk about. She desperately wanted to talk about her sexual difficulties – and felt her physician actually stopped her from talking due to his own discomfort. So she stopped talking as well. She said he did a thorough examination and seemed like a very smart man. He diagnosed urinary tract infections and while she wondered if the frequency of these infections were caused by sexual contact with her boyfriend (who apparently had several partners), she was reluctant to inquire. She ended with the same question, “why doesn’t he ask me about my sex life? It makes me feel quite foolish and mad (for wanting to find solutions to what has become painful intercourse and vaginal dryness)!” She expressed anger at the doctor for “assuming I am a dried up old prune.” However, these feelings of anger were accompanied by feelings of shame regarding her valid need for human connectedness. The clinical psychologist helped her formulate and initiate questions for her doctor rather than waiting to be asked. She was once again encouraged to take on the role of educator and help the young physician learn about the continued need for sexual expression in older adulthood. As a result of clinical interventions, these women each attained a level of selfacceptance that altered the ways in which they interacted with their social worlds. Rosa recognized how she sabotaged the opportunity for the intimacy she wanted, based on her own rejection of her physical changes. Her new found selfacceptance enabled her to embrace the affection of her partner. Like Rosa, Sylvia was able to recognize that her desires were normal and she could assert her needs despite the discomfort created by the reactions of the staff. She developed a capacity to view the staff as “uninformed,” and was able to ignore their comments. Finally, Evelyn was able to initiate the conversations she was awaiting from her doctor. This enabled her to achieve a much greater sense of self efficacy and acceptance. All three women exemplify the importance of having opportunities to express their needs and feel acknowledged. IMPLICATIONS FOR PRACTICE AND POLICY In order to create effective change surrounding this issue it is important to take into consideration not only the attitudes of those in the helping profession and the older adults themselves but also the larger negative sociocultural stereotypes

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surrounding sex and aging. Misconceptions regarding older adult sexuality pervade our society and contribute to the myth of older women as lacking sexual feelings and needs for intimacy. These unfounded beliefs in conjunction with ageist attitudes that view older adult sexual practices as shameful and label older adults as sexually undesirable only promote the idea that engaging in sex in not normal after a certain age. These more accepting older adult attitudes regarding sexuality along with the advent of erectile dysfunction drugs that treat health issues which have previously been barriers to sexual expression in older adults, are helping to create an environment where the idea of older adults as sexually active is becoming more acceptable. More positive portrayals of older women as both active and attractive can be viewed in advertising and marketing images. Campaigns such as DDB World wide’s “Safe Sex for Seniors” television ads that seek to bring awareness to the rise in older adult STI’s are more prevalent. Still, further efforts are needed to continue to foster this burgeoning positive social perception of aging and sexuality, the continued need for human connectedness and challenges to limited modes of sexual expression. Awareness and education remain the fundamental components of this change. Infusing information about older adult sexuality into current school sex education programs, implementing sex educational programs for care providers in senior living facilities, and increasing the amount of education that healthcare professionals receive in medical school about older adult sexuality are a few ways that we can begin to boost awareness and positive perceptions of older adult sexual health in our society. A recommendation is to include questions on sexual health as part of an annual physical. Health care providers need to provide opportunities to women clients for open discussions about sexual health. Assessments should be geared toward recognition of the age related physiological changes, the social and psychological context and the level of desired function of the individual. Older women will neither be more conversant if the assessment is geared toward younger women, nor if the assessment of sexual function is eliminated on the basis of age. However, providing the context for discussion, the potential for personal fulfillment and sexual health greatly increase and many women will be fortunate that someone did ask (about their sexual health).

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CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

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CHAPTER 6

Substance Abuse Among Older Women John Orwat*, Amanda Besinger and Elizabeth Morgan School of Social Work, Loyola University Chicago, Chicago, USA Abstract: As the baby boomer generation ages, the problem of substance abuse continues to grow among older adults in America. Older women remain one of the most vulnerable among those affected by substance misuse, abuse, and addiction, yet this population remains misunderstood, stigmatized, and overlooked. Unique life changes experienced by older women contribute to the difficulty in identification of substance misuse and abuse within this population. Such experiences include loss of loved ones, loneliness, physiological changes, financial stress, pain management, and other co-occurring mental and physical health conditions. Alcohol remains one of the most prevalent and relevant substances older women use to cope with these changes. This chapter explores the major issues surrounding alcohol abuse among older women by defining the problem, identifying key risk factors, signs, and symptoms, outlining useful screening and treatment tools, and providing implications for future research on this critical yet overlooked issue.

Keywords: Alcohol abuse, Coping, Older women, Substance abuse. INTRODUCTION Substance abuse is one of the fastest growing health problems among the elderly, fueled by the aging of the baby boomer generation. Not only has this generation of older adults had more exposure to substances, but they are also more likely to use substances to treat conditions. This misuse and abuse is likely to create complications with co-occurring health issues and a healthcare system that is unprepared to deal with subsequently unique issues and demands. Furthermore, Corresponding author John Orwat: School of Social Work, Loyola University Chicago, Chicago, USA; Tel/Fax: 312-915-7494; Email: [email protected].

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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rates of substance use among older adults are increasing: the prevalence of substance dependence among adults older than 50 is expected to increase from 1.7 million in 2001 to 4.4 million by 2020 [1]. Older adults face complex issues related to decreased income, loss of social supports, loss of spouse, adverse life experiences, withdrawal from social routines, anxieties over incapacities, and insomnia, which together can lead to loneliness and depression [2]. The elderly may use substances, including alcohol, to cope with these changes and disruptions. Substance abuse among older adult women requires specific attention due to its unique biological, social, and psychological impact. However, older adult women are not often considered, in part due to myths about those who use substances, but also due to differences in older women’s lived experience that make the identification of substance abuse more challenging. Additionally, women make up a majority of the elderly population since women tend to live longer than men. At any age, women face unique concerns related to substance use due to biological, psychological and social differences when compared with men. In older age, chronic health conditions and changes in metabolism exacerbate these differences, putting older women at a higher risk for poor outcomes in their physical and mental health and interpersonal relationships as a result of their substance abuse. Furthermore, these heightened risks make women more susceptible than men to severe and often fatal consequences related to their substance abuse [3, 4]. Further, despite evidence of the effectiveness of substance abuse treatment for the elderly, gender differences for treatment entry rates still require further research. Some studies suggest minimal differences between treatment entry rates for women and men overall [5]. Other studies suggest lower treatment entry rates for women than men due to a tendency among women to address their substance abuse more obliquely through mental health services [3, 6]. These issues illustrate the need to better understand the unique challenges and experiences facing older women who abuse substances. This chapter will explore substance use in older women, specifically women over 50. The chapter is organized into six topic areas: defining substance abuse for older women, prevalence, risk factors, signs and symptoms, screening and treatment, and implications for research. Two particularly relevant issues this chapter will highlight include prescription drug abuse among older women along

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with the increasing occurrence of alcohol use. It is the hope for this chapter that the reader will take away a greater sensitivity and understanding of older women and substance abuse as well as an awareness of the appropriate means for intervening and delivering competent services. PREVALENCE OF ALCOHOL AND DRUG ABUSE AMONG OLDER WOMEN Prevalence: The Big Picture The National Survey on Drug Use and Health (NSDUH) estimates that 1.4 million older adults or 1.8% have used an illicit drug in the past month [7]. The 2005 DASIS Report estimated that the number of substance dependent older adults (aged 50 and over) will increase to 4.4 million by 2020 [8]. The National Survey on Drug Use and Health (2005) found that older adults use substances at much lower rates than those age 18 to 49. In the past month, 17.1% of older adults had smoked cigarettes, 45.1% had drank alcohol, 12.2% reported binge drinking, 3.2% reported heavy alcohol use and 1.8% reported illicit drug use (Fig. 1) [7]. Overall, older adults are more likely to abuse alcohol than any other substance. Older men are more likely to use all substances than older women (Fig. 2); almost 20% of women used alcohol in the previous month [7]. Non-Hispanic whites constitute the largest proportion of older adults who reported alcohol use within the last month (Fig. 3). However, Non-Hispanic Black or African Americans reported high cigarette use and illicit drug use in the past month, but were the least likely to report alcohol use and heavy alcohol use. Hispanics or Latinos were the least likely to engage in cigarette use, alcohol use, and illicit drug use within the past month, but surprisingly the most likely to engage in binge alcohol use. Overall, older adults are most likely to drink alcohol when compared with other substances, while older men are more likely to abuse drugs/alcohol when compared with older women. White older adults report the highest incidence of alcohol use, but Hispanics/Latinos report the highest incidence of binge alcohol use.

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Fig. (1). Percentages of Past Month Cigarette, Alcohol, and Illicit Drug Use among Older and Younger Adults: 2002 and 2003. SOURCE: NSDUH REPORT: SUBSTANCE USE AMONG OLDER ADULTS: 2002 AND 2003 UPDATE

60.00%

45.00%

Males 30.00%

Females

15.00%

0.00% Cigarette Use Alcohol Use Binge Alcohol UseHeavy Alcohol UseIllicit Drug Use

Fig. (2). Substance Use in the Past Month by Gender: Older Adults, by gender. SOURCE: NSDUH REPORT: SUBSTANCE USE AMONG OLDER ADULTS: 2002 AND 2003 UPDATE

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63% Non-Hispanic White

50%

Non-Hispanic Black or African American

38%

25%

13%

0% Cigarette Use Alcohol Use Binge Alcohol Use Heavy Alcohol Use Ililcit Drug Use

Fig. (3). Substance Use in the Past Month: Older Adults, by Race. SOURCE: NSDUH REPORT: SUBSTANCE USE AMONG OLDER ADULTS: 2002 AND 2003 UPDATE

Prevalence: Alcohol Various studies examine alcohol use among older women. The 1997- 1998 National Health Interview Survey found that 34% of women 65 and older reported drinking behaviors, 32.3% of which was moderate and 2.2% was heavy [7]. Nineteen percent—nearly one in five women—of those who reported alcohol consumption in the 2001 National Household Survey on Drug Abuse also identified as daily drinkers [9]. While moderate drinking was highest among those 65-69 years of age, the lowest was in those 85 and older [10]. Among women 85 and older who reported previous heavy alcohol consumption, alcohol use remained high [10]. This is consistent with studies that show that older women who report moderate drinking tend to decrease their drinking with age; however, heavy drinkers will most likely remain heavy drinkers. In a study conducted by The National Center on Addiction and Substance Abuse at Columbia (CASA) in 1998, one in four women were considered “current drinkers.” Of the 2.7 million older women considered “at risk,” it was estimated that 1.8 million were abusing alcohol [3]. White older women were the most

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likely to be current drinkers (26.7%), followed by African American older women (17.5%) and Hispanic women (17.2%). Both African American and White older women had similar rates of heaving drinking at just over 10% while 6.9% of Hispanic reported heavy drinking. White and Hispanic older women reported alcohol dependence at similar rates (5%/4%) and African American women reported a higher rate of dependence (9%). Despite several studies that document the prevalence of alcohol use, abuse, and dependence among older women as well as across ethnicity, the literature has yet to adequately address the wide range of backgrounds and beliefs that may influence such behavior. Prevalence: Prescription Drugs Approximately 2.7% of the U.S. population (or about 7 million people) use prescription drugs for non-medical reasons [11]. The number of older adults who abuse illicit drugs or prescription drugs is anticipated to double from 2.8 million to 5.7 million by 2020 [12]. Further, despite decreasing admissions for alcohol abuse, treatment admission for abuse of prescription or illicit drug use has increased [12]. Not only are older adults expected to increase their rates of prescription drug abuse, but they are also expected to enter treatment at increased rates [13]. The Slone Survey, conducted by the Epidemiology Center at Boston University (2006), found that women age 65 and older consumed the most prescription medications, with 95% taking at least one medication, 63% taking at least five and 17% at least ten [14]. SAMHSA has estimated that 30% of all prescriptions and 40% of all benzodiazepine prescriptions are given to the elderly and older women are more likely to be prescribed a psychoactive drug than men upon visiting a physician [15]. Women in particular have been found more likely to hoard medications and mix prescriptions to enhance effectiveness [16] and use prescriptions long-term [3]. Misuse of prescription drug medicine among older women has been estimated at 11% [17, 18]. White women are the most likely to use psychoactive prescription drugs; however, some research has indicated that Hispanic women are more likely to use benzodiazepines [3].

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DEFINING SUBSTANCE ABUSE FOR OLDER ADULTS Substance Abuse Defined: Alcohol The National Institute on Alcohol Abuse and Alcoholism (NIAAA) (2009) identifies a standard drink as 14 grams of pure alcohol— typically equal to a 12 ounce beer, 8 ounces of malt liquor, a 5 ounce glass of wine, or a 1.5 ounce shot [19]. Generally, for women, only one such drink per day constitutes low-risk “moderate drinking,” while more than one drink is considered “heavy drinking.” Additionally, “binge drinking” includes more than four drinks within a two-hour period [19]. Surprisingly, it is important to note that the Centers for Disease Control and Prevention (CDC) reports that persons 65 and older comprise the group that binge drinks most frequently in the United States [20]. Overall, however, for older adults, the NIAAA recommends no more than one drink per day for persons over 65 [19]. Despite NIAAA guidelines, the DSM-IV only offers general criteria to distinguish alcohol dependence from abuse and does not indicate any specifications for older adults [21]. At best, the DSM-IV defines alcohol abuse as meeting one of the following criteria within the past twelve months: failure to maintain responsibilities of role at home, school, or work as a result of alcohol use, using alcohol in situations where it is physically harmful, legal problems related to alcohol, and continuation of alcohol use in spite of social or interpersonal problems worsened or resulting from it. Furthermore, the individual must also have never met the criteria for alcohol dependence, which occurs when an individual meets three of the following criteria within a period of 12 months: either need for increased amounts of alcohol to achieve effect desired (i.e. intoxication), or, alternatively, decreased effect from continued use of the same amount of alcohol, as well as withdrawal symptoms or drinking to prevent withdrawal symptoms, drinking larger amounts for longer duration than intended, repeated unsuccessful attempts or persistent desire to curb or stop drinking, great deal of time spent to obtain, use, or recover from drinking, and continued alcohol use despite knowledge of physical or psychological problems as caused or worsened by drinking [21]. The DSM-IV TR also describes dependence to include several of these criteria occurring repeatedly, within no specific duration apart

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from the duration specified within the criterion, such as “persistent” or “continued” [21]. While these criteria have been used for many years to appropriately diagnose alcohol dependence and abuse in adults more generally, the intersectionality of age and gender pose critical differences in the presentation of dependence and abuse symptoms. As such, classification of drinking behavior among older women can prove challenging. Many older women may be unaware that their alcohol use is risky for a few reasons: First, older women typically experience biological changes from aging that create lower thresholds for alcohol use than they once had. Second, these thresholds are often only exacerbated by co-occurring conditions. Finally, many of the symptoms of problem drinking mimic symptoms of other common or co-occurring issues for the elderly, such as depression, memory loss, or fatigue. Ideally, early screening and detection can help identify at-risk drinking behaviors before they become problematic. Substance Abuse Defined: Illicit Drug and Prescription Drug Abuse Older women consume significant amounts of prescription medications, some of whom have a high risk for misuse, dependence and abuse [15]. The National Survey on Drug Use and Health has defined nonmedical use of prescriptions drugs as: use not prescribed for the respondent by a physician or use only for the experience or feeling they caused [7]. Prescription medications at high-risk for non-medical use include some depressants, opioid and morphine derivatives, stimulants, and Dextromethorphan, often found in over the counter cold medicines [11]. Older women are more likely to be prescribed psychoactive medications and are more likely to take high-risk drugs for longer periods of time [15]. Specifically, the most common psychoactive drugs prescribed to older women are: anti-anxiety drugs (tranquilizers), sedative or hypnotics (sleeping pills), tricyclic anti-depressants and narcotic analgesics (painkillers) [3]. Inappropriate use of these medications places older women at greater risk for dependence and dangerous drug interactions, especially when mixed with alcohol. Furthermore, abuse of any of these medications on their own can produce several health risks ranging in severity and type, from drowsiness, slurred speech, slowed pulse, slowed breathing, and confusion, to dizziness, vomiting, paranoia, seizures, heart

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attack, and stroke. Several of these medications are taken quite frequently among the elderly, including but not limited to: Phenobarbital, Seconal, Xanax, Klonopin, Ambien,, Codeine, Percocet, Dexedrine, Ritalin, and even some cough and cold medications [15]. For the purposes of this chapter it will be important to distinguish between nonmedical use, misuse, abuse, physiological dependence, psychological dependence and pseudo addiction. The Diagnostic and Statistical Manual of Mental Health Disorders, 4th edition, Text Revision (DSM-IV TR) [20]. Defines non-medical use as the use of prescription drugs that were not prescribed by a medical professional or use for the experience or feeling a drug causes. Misuse is the incorrect use of prescription medication by patients. Abuse is a maladaptive pattern of substance use. Physiological dependence is increasing tolerance to a drug. Psychological dependence is a set of psychological symptoms that demonstrate overall loss of control or obsessive-compulsive drug seeking and continued use of a substance in spite of clearly adverse consequences. Pseudo addiction is drug seeking and other behavior that is consistent with addiction but actually results from inadequate pain relief. RISK FACTORS Risk Factors: Physiology and Health Physiological changes due to aging exacerbate the effects of even light or moderate alcohol use, leading to higher risks for negative health consequences in older adults, particularly older women [22]. At any age, when compared to men, the same amount of alcohol in women leads to greater risk for alcohol abuse/dependence as well as medical side effects more rapidly, a phenomenon known as telescoping [15, 23 - 25]. Older women generally have greater sensitivity to alcohol, lower tolerance, and metabolize alcohol at slower rates leading to intoxication after fewer drinks [15]. Physiological changes from aging can put strain on the elderly body as it works to process alcohol [26]. These include a general decrease in total body water volume, which leads to higher blood alcohol concentration, as well as physical changes in organ functioning, particularly in the liver and kidney [26]. Furthermore, research shows that women

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may be more vulnerable to other negative health risks of drinking alcohol, including memory loss, shrinkage of the brain, liver diseases, cardiovascular risk, and some cancers [27] . And yet, some research suggests benefit of alcohol use among older women. For example, mild alcohol use can buffer the impact of low hormone levels among older women, which can serve as a protective factor against coronary heart disease and osteoporosis, although heavier drinking negates this benefit [4]. Some studies also suggest that moderate alcohol intake may lower the risk of heart disease among women over the age of 55, one of the leading causes of morbidity and mortality among older women. However, older women would be better advised to eat a healthy diet, incorporate exercise, quit smoking, and maintain a healthy weight. Risk Factors: Interactions between Prescription Medications and Alcohol Older women are more likely to be taking prescription medications and face greater medical consequences when combining alcohol and many prescription drugs. A number of prescription medications interact with alcohol, many causing new health problems or exacerbating old ones, posing risks such as liver failure or even death [28, 29]. Given the necessary function of some of these drugs to manage chronic illnesses, such as heart disease or depression, the effects of even moderate alcohol use can be lethal [30]. Pain management is a prevalent concern among older adults, 88% of whom report recent pain experience [31]. To avoid the risk of overmedication or developing dependence on medications used to treat pain, many older women do not receive a dosage that effectively treats the pain or the medical condition. Further, accurate dosing can also become a challenge in older women because of biological differences and other treatments for co-occurring conditions [18]. When pain is not properly managed, anxiety and/or insomnia may increase, which results in the potential abuse of other drugs, such as alcohol, to manage the pain and anxiety [32].

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Risk Factors: Financial Women are more likely to face old age with fewer financial resources than men, as a result of lower lifetime earnings, the loss of a spouse who was the primary wage earner, and the fixed incomes of social security. Low socioeconomic status has been associated with poor outcomes for many health conditions, including substance abuse and dependence, due to insufficient access to appropriate healthcare and lack of funds to ensure adequate nutrition and housing [33]. Interestingly, older women with higher incomes have been found to be twice as likely to drink and three times as likely to drink above NIAAA recommendations and are also more likely to use nicotine and psychoactive prescriptions [3]. Ironically, older women with higher incomes are less likely to enter substance abuse treatment than older women without insurance [34]. Older women on Medicare are more likely to have a hospital admission for substance abuse (8.3%) than heart attack (2.3%). Risk Factors: Early vs. Late Onset Use The onset of alcohol problems may occur early in life (early onset) or during old age (late onset). Among the elderly more generally, most adults who abuse alcohol later in life are often likely to have engaged in frequent alcohol abuse throughout the lifespan. Seventy percent of these adults are continuing an early onset trend of abuse that began many years prior [28]. Early onset use is associated with a variety of comorbidities such as major depression, anxiety and bi- polar disorder [35]. Additionally, individuals with early onset of use are 70% more likely to continue to use drugs or alcohol throughout their lifetime [35]. In contrast, women identified with late onset use are more likely be healthier both physically and psychologically [35]. In response to lifestyle changes, such as loneliness, changes within the family, the loss of loved ones, or career changes brought on by retirement, late onset drinking typically occurs when an older woman experiences difficulty coping with such life events [3, 28]. Late onset drinking occurs in about 30% of the elderly population and is more prevalent in women than men [28]. Both of these groups of older women are similar in the sense that their drinking is most likely to occur daily outside of the home, alone in the home, and in response to emotional pain and loss [35]. Overall, it appears that

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early onset use places older women at greater risk for experiencing negative consequences from use. Risk Factors: Sexual Orientation Research related to lesbian women use and abuse of alcohol and illicit substances is mixed [15]. SAMHSA has also noted that there are conflicting reports on the prevalence of substance use within the lesbian population, and some have suggested that previous estimates are overstated [15, 36, 37]. Overall, the current state of research seems to be divided as to whether identification as lesbian presents as a risk factor for increased substance use and substance abuse related problems. Some research has indicated that lesbians have higher incidence of drinking behaviors, including higher rates of alcohol consumption and alcohol related problems [38]. Considering that women live longer than men, this trend may follow women as they age; research is inconclusive on this matter, as SAMHSA has reported that lesbian women are likely to decrease their drinking with age [15]. Some studies have found that women that who disclosed their sexual identity at a younger age experience more negative consequences of drinking than those who disclosed later in life [38]. Early disclosure, including to family members, has also been associated with a greater number of alcohol dependence symptoms [38]. Lack of social supports for the older lesbian/bi-sexual as well as older women in general can contribute to problem drinking with less likelihood of intervention, while feelings of loneliness can exacerbate anxiety and depression [3]. Women who abuse alcohol and drugs are stigmatized more often than men, and, as a result, unparalleled labeling, guilt, and shame imposed by society present as significant barriers for women in receiving treatment [3, 39]. Women who identify as lesbian or bi-sexual may also experience stigmatization due to their sexual orientation, which is likely only exacerbated at the intersection of sexual orientation and substance abuse among older lesbian women . Researchers have suggested that this additional stress may account for the variation between lesbian and heterosexual women’s drinking frequency [38]. Overall, older lesbians are a

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unique segment of the substance abusing population, particularly in their increased stigmatization. Continuing research in this area will serve to clarify the characteristics of the older women population and provide a greater understanding as to their use patterns, risk factors as well as strengths. Risk Factors: Role Changes, Death and Social Issues Profound life changes that occur during the older years often increase the likelihood of loneliness in older women, such as death of a spouse or friends, distance from children or other loved ones, and decreased social opportunities. SAMSHA has noted that role changes such as retirement, loss of a spouse, loss of primary role (i.e. caretaker of family) and possible loss of home (move to nursing home or retirement community) all present as risk factors for older women, meaning that these factors place the older woman at greater risk for using drugs and alcohol [35]. Because women tend to live longer than men, heterosexual women may also spend more of their elderly years living by themselves. Though this may lead one to believe that alcohol abuse might occur more frequently in isolation for elderly women, the research is conflicted on this issue. Surprisingly, some research shows that alcohol use increases in direct proportion with sociability [29]. Women who live longer than their male counterparts may rely on their friendships for continued emotional and social support. Older women have been indicated to continue drinking behaviors to sustain these friendships, relationships, or social ties [3]. Due to continued issues related to isolation and loneliness in the elderly populations, older women may find security in their attachments to friends or partners that use alcohol/drugs and may continue drinking/drugging behaviors to sustain these relationships. Higher rates of drinking are also found in retirement communities that allow social activities with alcohol present, with one in four heavy drinkers reporting to have increased their drinking since moving there [3]. Despite recommendations by the CDC, up to half of all nursing home residents have “alcohol-related problems,” and yet some nursing homes continue to sponsor social opportunity events, such as cocktail hours, that feature alcohol [26]. Furthermore, social

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stigmas against the illness of addiction, coupled with a double standard against women’s alcohol and substance use, make this issue all the more important to consider when working with elderly women [40]. Overall, older women may also be at higher risk for substance abuse due to the death of their spouse or partner as well as the grief associated with role changes, such as no longer taking care of their family members. Older women may also begin or continue drinking to maintain social ties in their relationships or neighborhoods in the case of retirement communities. It is imperative that these unique social dynamics be taken into account when serving the older female. Risk Factors: Dual Diagnosis Research shows that alcohol remains the most common cause of psychiatric hospital admissions among the elderly [26]. Female substance abusers in general have been found to have higher rates of certain psychiatric disorders such as mood, eating, anxiety, and post -traumatic stress disorder [5]. Additional research has reported that female substance abusers are more likely to be associated with comorbid psychiatric disorders such as depression, anxiety, bipolar affective disorder, phobias, psychosexual disorders, eating disorders, or posttraumatic disorder [6]. Female substance abusers with psychiatric issues are also more likely to experience significant medical issues. Interestingly, women do not appear to view their substance abuse as primary when faced with psychiatric conditions. Females with dual diagnosis are more likely to seek out treatment for their mental health issues rather than substance abuse, which may indicate that dual disordered females may not perceive their substance abuse issue as primary [5]. Older females may be at increased risk for psychiatric issues such as depression due to age specific life events such as loss of income, death of a spouse, sudden or chronic illness, and loss of independent living or retirement. CASA (1998) reported that women over age 59 are at the highest risk of abusing alcohol and psychoactive drugs because they are more likely to experience these life stressors when compared with men [3]. Additionally, female alcoholics have been found to be twice as likely to be depressed and four times more likely than male alcoholics to be depressed [3]. Ultimately, females in general are at a higher risk for dual

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diagnosis issues, this risk can be compounded due to life stressors related to older age, such as loss of a spouse. Furthermore, the effects of drinking can manifest themselves in ways similar to the effects of diseases like dementia, often making it difficult for medical professionals to correctly identify the problems in their patients [26]. Depression, the most common psychiatric condition among the elderly, often occurs in conjunction with anxiety [41]. In this way, alcohol abuse among older women may not only serve the purpose to alleviate physical pain, such as arthritis, but can also serve to self-medicate emotional wounds of loneliness or mental health concerns related to anxiety, depression, or history of sexual or physical abuse, in place of healthier coping strategies [40]. These mental health issues, in conjunction with other risk factors such as biology, medication interactions with alcohol, financial issues, early/late onset use, issues related to sexual orientation, role changes, death, and social issues, demonstrate the myriad unique and significant risk factors facing this population. SIGNS, SYMPTOMS, AND SCREENING Signs and Symptoms Research shows that older women are more likely to seek help for related concerns, such as depression and anxiety, than for alcohol abuse specifically. Typically, elderly women seek help for alcohol abuse or their co-occurring factors from their primary care physicians [4, 39]. In fact, many physicians are finding themselves pulled in multiple directions with their patients: Not only do general care physicians often treat their patients for chronic diseases that would and should otherwise be referred to a specialist, but the converse is also true, as specialists often find themselves assisting with their patients’ primary care concerns [42]. As a result, a great deal of the burden of alcohol screening falls into the hands of doctors. Initiating the screening process itself presents a challenge among elderly female patients. First, screening for substance abuse or misuse remains less likely among women than men [4]. Second, many of the signs of substance use are difficult to detect among the elderly, and may either be dismissed as symptoms of the aging

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process, or considered isolated issues, such as fatigue, disorientation, falls, shaking or tremors, poor hygiene, memory loss, and depression [4]. SAMHSA has identified several other additional signs of alcohol and/or drug abuse in older women, including: neglect of household responsibilities (i.e. bill-paying, house cleaning, pet care, etc.), visiting several physicians and/or medications, social withdrawal, lack of nutrition and/or food, anemia, loss of vision, and other unexplained health concerns [35]. It is also important to note that older women who misuse prescription medications may exhibit unique signs/symptoms. Non-compliance rates of prescriptions among the older population has been estimated to account for 11.4% of hospital admissions, twice that of the general population [3]. However, it is unclear whether the admissions are due to underuse or overuse of prescription medications. Typically, overuse may display itself in the elderly through stupor or loss of consciousness, while underuse may be evident in signs such as fainting spells or injury [3]. However, many of the symptoms between under/over use may overlap with one another, which makes it imperative for practitioners to follow up with older women to ascertain detailed information regarding their medication regimens, symptoms, and behaviors [3]. Signs of prescription abuse among this population include incidence of multiple prescriptions from multiple providers, such as four different opiate prescriptions from four difference primary care physicians. Additionally, requests for re-fills prior to assigned date may also indicate misuse. Several other symptoms that are common among prescription drug abuse are: excessive sedation, falls and possible withdrawal symptoms such as confusion, trembling, stomach and muscle cramps and trouble sleeping [3]. It is important to note the strong association between prescription drugs and falls among the elderly. CASA reported that even after controlling for alcohol use, anti-anxiety drugs, sedatives, anti-psychotics and anti-depressants double the risk of falls and factures among the elderly [3]. Due to the high risk of abuse for many of the prescription medications that the elderly are prescribed, ongoing screening

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for possible misuse is highly recommended. Particularly because older women are more likely to visit a physician and be prescribed a psychoactive medication, it is significant that their risk for negative outcomes from also using alcohol or overusing their medication increases due to slowed metabolism, a greater reliance on medications for chronic medical conditions, and other age related changes [35]. Table 1 outlines several warning signs that indicate the need for provider intervention. Table 1. Warning signs that indicate a need for provider intervention. Tolerance-oriented Behaviors

•Excessive worry of drug effectiveness • Self-medicating by increasing doses of prescribed psychoactive drugs that aren't "helping anymore" or supplementing prescribed drugs with over-thecounter medications of a •similar type Detailed knowledge about a specific psychoactive drug, heightened attribution of significance, impact, or usefulness of drug

122 Older Women: Current and Future Challenges (Table ) contd.....

Drug-seeking Behaviors

•Excessive worry about having enough pills or dosage schedule • Continued use and refill requests of prescriptions for which conditions should have improved. Refusal to discontinue or decrease dose of psychoactive •prescription Physician-directed complaints, such as refill refusals, dosage tapering, or disregard of symptoms perceived as significant

Social Behaviors

•Neglect or change in personal appearance •and/or cleanliness Eviction from residence •Planning and/or evaluating events or restaurants on the basis of the presence of alcohol, planned drinking prior to events, protective behavior toward alcoholic •beverages Withdrawal from others or from typical social activities

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(Table ) contd.....

Other Behaviors of Concern

•Smoking cigarettes •Traffic violations •Excessive sleep during •the day Empty alcohol containers present, either thrown away or otherwise concealed • Physical trauma, such as bruises, burns, or fractures, particularly those of unidentifiable source

Source: Substance Abuse and Mental Health Services Administration (SAMHSA); 1998 Treatment Improvement Protocol (TIP) Series, No. 26

The importance of recognizing the symptoms of abuse and misuse is imperative for providers, practitioners, clinicians, etc.; however, it is important the provider is able to communicate to support system members possible warning signs of use. Due to possible limitations related to mobility and transportation, the elderly patient may regularly have their supports present during medical appointments. By communicating warning signs of abuse and misuse to support system members, this could increase protective factors for negative consequences of drug/alcohol use. Though some of these signs may appear typical among the elderly—such as complaining about one’s physician or napping during the day—the excessive nature of several of these signs, particularly those which appear most symptomatic of DSM-IV abuse and dependence criteria, spark great cause for concern. Furthermore, the tendency among older women to seek help for the factors that co-occur with alcohol abuse indicates a demand for alcohol screening in conjunction with more traditional mental health solutions or even regular medical check-ups [4]. Though self-reporting can be problematic, well-structured patient questions can make a great deal of difference. For example, Culberson identifies “Have you had a drink containing alcohol within the past three months?” as the single most important question healthcare professionals can ask when screening patients [43]. Other valuable screener methods point to similar specificity in screening questions, rather than asking open-ended questions about alcohol use.

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Although recommendations from SAMSHA propose direct questions about alcohol use, generally, questions about alcohol use function better when qualified. For example, rather than ask a patient, “Do you drink alcohol,” a better question might be, “How many times per week do you drink an alcoholic beverage?” [4]. The context of screening may also be critical when working with older women. It is recommended that screening questions be posed in a confidential setting and in a non-threatening, nonjudgmental manner [44]. Due to the increased stigma that women undergo regarding substance use, the manner in which the questions are posed, as well as the tone, body language, and delivery are crucial. Often times, older adults are more willing to address their problem behaviors when they are labeled as medical rather than psychiatric or psychological [44]. Labels such as “addict” or “alcoholic” should be avoided and replaced with action words like “drinking” in order to avoid re-stigmatizing the often marginalized elderly population [35]. Despite the relative ease and cost-effectiveness of such measures, screening relies heavily upon appropriate training and also the time it requires to administer screening methods. Physicians often do not receive the necessary training for such screening, whether during medical school, residency, or continued practice, and often fail to notice and diagnose substance use disorders, despite the considerable amount of time they often spend treating the resulting symptoms [42]. Given the myriad of possible medical needs elderly women have demonstrated, one-on-one physician-patient interaction time is at a premium. Physicians cite this as one major barrier to screening, along with other concerns, such as lack of confidence and insufficient training [42]. Furthermore, beyond the screening itself, physicians often lack the knowledge necessary to identify and implement the “next-step” of intervention, whether assessment, treatment, or referral [42]. Furthermore, some perceptual differences also prove significant with regard to patient screening and assessment within primary care, as many doctors share different social values or remain suspicious of the efficacy of addiction treatment. Additionally, both physicians and patients are often uncomfortable or reluctant to enter into screening procedures. Finally, required productivity standards, as determined by the larger care- providing organization, along with limits on insurance coverage and reimbursement, often prohibit physicians from initiating screening and

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intervention practices [42]. Substance Abuse Assessment If the screening results indicate further intervention, it is recommended that the patient undergo a full and comprehensive assessment. Generally a licensed professional in the mental health field completes these assessments. The two primary assessments are the Structured Clinical Interview for DSM-III-R (SCID) [45] and the Diagnostic Interview Schedule (DIS) for DSM-IV [46]. SAMHSA estimates that Structured Clinical Interviews take approximately 30 minutes, consist of 35 questions, and cover several areas. These areas include: substance abuse disorders, psychotic disorders, mood disorders, anxiety disorder, somatoform disorders, eating disorders, adjustment disorders, and personality disorders [44]. The Diagnostic Interview Schedule is a structured interview that does not require the clinical judgment of a provider and can by used by a variety of professionals [44]. It assesses current and past symptoms and is even available on the computer [44]. It is important to note that while these assessments have been validated. Older adults may have special concerns that may require additional assessment to fully understand their use patterns and impact of drug and/or alcohol use. SAMHSA recommends the following additional assessments for older adults: functional ability test, comorbid disorders (physical and psychiatric), and cognitive impairments (dementia, delirium, affective disorders, sleep disorders) [44]. Following an adequate and comprehensive screening and assessment, the clinician must implement appropriate treatment. TREATMENT Treatment: Admissions For the first time, older adults are entering treatment at rates higher than their younger counterparts [47]. Alcohol was the most frequently reported primary substance for treatment admissions among older adults; however, opiates, as well as cocaine, marijuana, and stimulants have all proven themselves as formidable concerns among adults 50 and up [1]. This trend may change, as admissions for

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alcohol appears to be decreasing for older adults, while admissions for illicit drug use or prescription misuse are increasing [13, 47]. Treatment: Integrated Approach Unfortunately, a great number of women with alcohol problems either do not seek treatment themselves, or only seek treatment as it coincides with other issues due to social stigma. Such issues may include mental health concerns, such as depression or anxiety, or physical ailments such as falls, fatigue, or memory loss. Furthermore, alcohol abuse among older women may not occur in isolation, but rather, as one facet of multiple issues within a person. One primary example of this is the common correlation between past histories of abuse and trauma and alcohol abuse [3, 40] As a result, issues that initially appeared to have singular needs—such as medication or therapy—require a menu of therapies and solutions, along with the insight of multiple professionals. Although the literature is mixed on whether women or men are more likely to seek help for alcohol abuse [3, 34, 48], the research consistently shows that the elderly are the least likely age group to enter treatment [49]. The stigma surrounding alcohol abuse, particularly for older women, explains part of this fact, as older women are likely to experience feelings of guilt, shame, or denial with regard to their alcohol abuse [3, 25, 49, 50]. Furthermore, attitudes among health care professionals, family, and friends also contribute to this social stigma, as many are either reluctant to consider alcohol abuse as a potential problem among elderly women, or afraid to refer women to treatment for what they may presume to be one last remaining liberty or joy [3, 41]. As with most public health issues, prevention is a critical first step to ameliorating problem drinking among older women. Educating not only older women themselves, but also their families, friends, physicians, and communities, will help to eradicate the stigma surrounding alcohol abuse, and provide a point of entry for early interventions, such as self-report and screening [3]. Additionally, because older women are most likely to consult their primary care physicians for problems related to alcohol/drug use and misuse [3], screening within the primary care setting allows for early identification and treatment of these issues. Because

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funding from Medicare and other organized health management often do not reimburse services provided outside the hospital setting, integrated care models are likely among the most effective methods for helping older women with these issues. In fact, research indicates that, for older adults, an integrated model of care functions better than a model based on referrals [51]. Though pharmacological treatments, such as benzodiazepine therapy, may provide one solution to alcohol abuse, there is not sufficient research at this time on the effectiveness of such pharmacological agents [52]. However, in addition to medical interventions, there are many organizations available to women with alcohol issues, such as: Alcoholics Anonymous (AA), Secular Organization for Sobriety (SOS), Women for Sobriety (WFS), Rational Recovery (RR), and Alcoholics Victorious (AV) [40]. Among the treatments available for alcohol misuse, the FRAMES [53] or AFRAMES [54] model has been shown to be a particularly effective approach to treating older adults. The basic elements of the FRAME method follow six steps: Feedback, Responsibility, Advice, Menu, Empathy, and Self-efficacy, while AFRAME provides a seventh step in the form of an initial “A” for Assessment [53, 54]. By including Assessment, the A-Frame approach recognizes the need for Assessment procedures, such as the CAGE questionnaire or the AUDIT [54] to determine the patient’s needs prior to initiating further intervention. Together, these steps offer an interactive model of treatment that not only allow the patient to receive information and insight from the clinician, but also provide future selfcare tools for the older individual as well. Treatment: Gender Specific Research has been incongruent regarding the effectiveness of gender-specific programming [5, 55 - 57]. However, it appears to have been acknowledged that gender is not a predicting factor for outcomes, but may be useful to address specific issues in a gender specific manner for sub-populations of women (pregnancy, PTSD, parenting, etc.) [5]. The relational model, based on the work of Jean Baker Miller [58] and Carol Gilligan [59] can be utilized to provide effective services to women. In

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comparison to other traditional treatment approaches, the relational model focuses on the development of relationships and works to empower women through the maintenance and development of positive, healthy and satisfying relationships. The relational model identifies three areas of special consideration when providing treatment: cultural context, relationships, and pathways to growth. In doing so, the model de-emphasizes the traditional focus on independence, favoring instead the women’s social supports as the primary structure of their development and healthy conduit toward achievement [58, 59]. Women-specific programming is effective in enhancing longer-term clinical outcomes [5], in decreasing psychiatric symptom severity [55] and enhancing treatment outcomes for those with low self-efficacy levels [60]. In addition to gender-specific programming, other contextual factors have been found to foster recovery for women: working a program of recovery, developing a support system, making amends for past behaviors, recognizing recovery as a life-long process, and helping other alcohol dependent women struggling in recovery [40]. As a result, gender-specific programming may offer additional support for the elderly woman than traditional treatment methods alone. Treatment: Important Considerations Older women may have special needs while in treatment that differ from the younger population. Mobility issues, hearing loss, cognitive deficits, and sight issues may all play a role in the older woman’s treatment course [3]. Therefore, it is critical to ask and account for these questions upon referring and/or assisting older women to enter treatment. For example, older women who experience health or mobility issues may not be able to leave their home, thereby identifying home visit programming and home-based services to be imperative. CASA reported that in general, mature adults might feel less hopeful regarding their future. Unlike the younger population, older adults may feel there is not much life left for them, as they may have already seen their children grow up, had a full career, or be experiencing the deaths of their peers with increased frequency. This lack of hope may hinder motivation for treatment, while women in general may also have greater denial and guilt surrounding their alcohol or drug

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use [3]. Therefore, traditional treatment approaches which focus on “feedback” in the form of confrontation and group exposure of issues, such as the community treatment model, may not be conducive for the elderly individual’s recovery [3]. Thus it may benefit the older women to receive programming in safer environments such as a senior center, a familiar medical center, or other community center. Treatment: Ethical Considerations Though health care professionals and therapists can play a crucial role in improving the lives of older women, a number of ethical considerations are important to keep in mind. Especially while working together with concerned family and friends, it is critical to respect older women’s autonomy with regard to their lifestyle choices [50]. This can be difficult to manage while at the same time recognizing the vulnerable aspects of this population and keeping social and personal stigma in check [50]. And although community resources such as Alcoholics Anonymous have proven beneficial to many of those who abuse alcohol, more elder-specific programs geared toward this special population may be required to best address the needs of older women, such as issues of isolation or common health concerns [3, 50]. Lastly, SAMHSA offers advice for clinical staff in treating older women with substance abuse issues. Adherence to techniques and approaches that value the older woman’s life experiences as well as honor her goals and values will ensure that service delivery occurs in an ethical manner. Such methods include: building self-efficacy through improved coping strategies, providing therapy to address lingering issues such as grief, supplementing and reinforcing socio-emotional, medical, and other therapeutic support systems, addressing maladaptive coping patterns through behavioral activation therapy, and acknowledging changing roles [35]. IMPLICATIONS AND FURTHER RESEARCH Despite a growing body of literature on older women and alcohol abuse, further research is needed in this area to outline the specific needs of this population. According to the United Nations, elderly persons over age 80 are the most rapidly

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growing population worldwide. In the United States, the baby boomer phenomenon is now manifesting itself as a dramatic increase in the population of older adults [61]. Other social trends, such as the feminist movement of the 20th century, have created a new set of approaches and attitudes toward health, wellness, and social norms for the baby boomer generation, which are translating into a new paradigm of methods with which to serve the older population. Also, the prevalence of multiple comorbidities along with alcohol use, such as prescription drug use, history of abuse and/or sexual assault, and co -occurring mental health concerns, such as depression and anxiety, indicates the complexity and depth of this issue. Additionally, though primary care physician visits have been shown to be a critical first step toward recovery for many older women, lack of reimbursement for services, combined with insufficient training, confidence, and detection among physicians, along with social stigma, create a problematic delivery of care. Last but most certainly not least, research on alcohol/drug use and misuse has overwhelmingly and primarily focused upon men and other majority populations, such as Caucasians, heterosexuals, and those of middle and upper-class socioeconomic status. As a result, the female population, along with many other cultural and social contexts, has not been adequately represented in the literature. As a result, the research on these issues calls for a drastic reform not only in approach and methodology, but also in perspective as our contexts shift, not only with the aging of the baby boomer generation, but also with an everchanging, vastly multi-cultural world. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

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CHAPTER 7

Defining Abuse in Older Women: Voices of the Professionals in Elder Abuse and Domestic Violence Teresa Kilbane* School of Social Work, Loyola University Chicago, IL, USA Abstract: Women in their later years’ experience abuse from their intimate partner. This abuse can be ‘domestic violence grown old’ or ‘abuse in later life’. Two service systems in the public sector respond to these women-adult protective services and domestic violence programs. This chapter compares how elder abuse investigators and domestic violence workers identify intimate partner violence among older abused women by an intimate partner served at their respective agencies in a major urban city. The research study collected qualitative data from interviews of seven elder abuse investigators and nine domestic violence workers describes how they define and contrast elder abuse versus domestic violence. Both systems serving the older woman experiencing intimate partner violence (IPV) define domestic violence similarly. Entry into the systems can be based on mandate of the system rather than the needs of the client. Older women experiencing IPV require the expertise of each system. With strong leadership from both professions, the establishment of collaborative mechanisms, and cross training opportunities, the older woman facing harm from her partner will be served more effectively.

Keywords: Abuse in later life, Adult protective services, Domestic violence, Older women. INTRODUCTION Older women experience intimate partner violence (IPV) but receive less attention Corresponding author Teresa Kilbane: Loyola University Chicago School of Social Work 820 North Michigan Avenue Chicago, IL 60611, USA; Tel: 312-915-7026; Fax: 312-915.7090; E-mails: [email protected] *

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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than their younger counter parts [1]. IPV is a more narrow definition of elder abuse: the physical, sexual, or psychological abuse or neglect is perpetrated by a current or former partner, spouse or paramour, as opposed to a family member or caretaker. These two systems have a difference in their philosophy on how to treat abuse in later life, thus, these women face the possibility that neither adult protective services (APS) nor domestic violence services (DVS) will meet their service needs [2 - 4]. APS does not include safety planning and the cycle of violence in their training so the older abused women may not be safe. DVS does not include the aging process in their training, thus, they tend to advocate for younger women and their children possibly ignoring age-specific needs of the older abused women. Therefore, the older abused woman in later life needs our attention to ensure she is living a safe and satisfying life. The purpose of this research study was to investigate the perceptions of professionals who serve older abused women. Toward that end, the study compares and contrasts elder abuse investigators and domestic violence workers related to how they view women ages 50 and over who have been abused by an intimate partner. While thee qualitative interview covered a wide range of topics, the focus here is on definitions of elder abuse versus domestic violence, prevalence of intimate partner violence (IPV) prevalence among women who are age 50 and over, and the interface with each other’s profession. The guiding question for this study is to whether the older abused woman is considered an abused elder, a battered woman, has characteristics of both, or should it really matter when seeking help? The answer to this question is important to these women who need these two systems to respond to their needs in a timely manner no matter how they are classified by the first responder. In order to create an approach to appropriately respond to the needs of older abused women, the profession needs to understand how all the key participants, including the adult protective service workers and domestic violence shelters and agencies, define the problem of abuse in later life so better interventions and services can be developed for these women [5]. LITERATURE REVIEW This section addresses a number of important areas to address in comparing and

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contrasting these two types of professionals who serve older abused women. Since I assume their perception will be based on: their theoretical model of how they view the abused woman, their definition of elder abuse versus domestic violence, and the depth of their experience of working with intimate partner violence at a later age I explore the literature in these areas in this next section. THEORETICAL MODELS Although the older abused woman should have at least two systems to turn to for assistance, domestic violence or adult protective services, “neither system has been particularly successful at understanding and meeting the needs of older women who are abused by intimate partners and family members” (p.1) [2]. Domestic violence agencies and shelters tend to serve younger abused women while adult protective services tend to serve abused women at the older range that can range from able-bodied to those who are frail or incompetent. Regardless of their capability or competency to take care of them, the type of intervention the older abused woman receives relies heavily on who first responds. Each system has their own philosophy and model for service delivery, and how the older abused woman’s safety is regulated. APS is sometimes aligned with Child Protective Services which also focuses primarily on protection of the client, in this case, minor children. Domestic violence services take an opposite stance with its feminist empowerment model, with a specific focus primarily on younger abused women and their offspring [1]. APS characterize the older abused woman as less capable, thus, the system needs to make sure they are safe in their homes. DVS views the older abused woman as capable of advocating for herself when provided services in such areas as safety planning, securing protective orders, and groups for peer support. Hightower [3] believes that older abused women become part of the ‘elder abuse’ system rather than the ‘domestic violence’ system, thus, they are viewed with the medical model used within elder abuse focusing on their frailty and daily living needs. She further reports that “This model supports a view of the elderly as ‘sexless’” and “to homogenize older people by not taking into account individual differences, including gender” (p.1) [3]. The ramifications is that “This perspective on older adults has resulted in the failure of advocates and service

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providers in the area of violence against women to view the abuse of older women through the lens of gender and power, and to recognize that older women doneed services such as shelter, crisis intervention, safety planning, counseling, advocacy, and peer support groups” (p.1) [3]. The medical model also implies the workers in the elder abuse field are trained in the area of aging and deal with age-related health care issues. Hightower [3] feels that if one comes from this viewpoint, one uses the lens of paternalism and ageist implications, and ignores acts of violence that one might report as breaking the law if the woman was a younger age. Domestic violence services evolve from feminist theory, emphasizing an empowerment model. The assumption is that abused women may be disempowered by their coercive situation but are capable of advocating for themselves if given the appropriate services and skills. Montminy [6] contrasts the two paradigms of domestic violence and elder abuse. The domestic violence paradigm is “explained through a feminist analysis that focuses on gender-based dynamics of power and control” in contrast to the risk/vulnerability model of elder abuse (p.4). The first paradigm focuses on intimate relationships while the second paradigm includes abuse by a large number of potential perpetrators in caregiving relationships. Brandl and Raymond [7] claim that many domestic violence agencies do not consider elder abuse victims as part of their target populations, thus, they may be assuming older women by virtue of their age are not capable of advocating for themselves. Domestic violence agencies should consider the older women’s capability to advocate for herself when experiencing intimate partner violence and seeking services. Given the origins of these two delivery systems, collaboration has been hampered by “misunderstanding, misinformation, and missed opportunities” (p.1) [7] Hightower [3] also points out that neither of the approaches focus on violence as a continuum of violence through one’s lifespan. In addition, she feels that neither approach deals with the role of the older generation in intergenerational transmission of violence. More attention is needed to understand how these two response systems view each other and their work with older abused women.

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DEFINITIONAL ISSUES Defining abuse for women in their later years is important because it may direct how the system responds to their predicament. The National Center on Elder Abuse (NCEA) provides an overall definition of elder abuse, however, they also recognize that definitions vary by state: “Elder abuse is a term referring to any knowing, intentional, or negligent act by a caregiver or any other person that causes harm or a serious risk of harm to a vulnerable adult” (http://www.ncea.aoa.gov/ncearoot/Main_Site/FAQ/Questions.aspx) [8]. Further, abuse may be broadly defined as physical abuse, emotional abuse, psychological abuse, exploitation, neglect and abandonment. Perpetrators have a special relationship with the elder (a spouse, a sibling, a child, a friend, or a caregiver), and abuse occurs in the home of the elder or the caregiver. Thus, IPV is only one element of elder abuse in this definition which includes a wide range of perpetrators. The definition does not include harm to an older person by strangers or casual acquaintances. While there are federal laws for child abuse such as CAPTA (federal child abuse reporting act) and domestic violence (Violence Against Women Act), there is no federal legislation governing the handling of elder abuse. However, state laws do exist, such as The Elder Abuse and Neglect Act in Illinois, which include mandated reporting requirements. It should be noted that while federal laws exist such as the Violence Against Women Act for domestic violence victims, there is no mandated reporting requirement as found in child and adult protective services legislation. The professionals interviewed for this study operate in the state of Illinois. As such, they must adhere to this state legislation which states their clients have to be 60 years of age and older. Their client needs to reside in a domestic living situation meaning not harmed by a stranger or acquaintance. The person they reside with has to have allegedly abused, neglected, or financially exploited the client. The legislation also includes self-neglect by the client herself [9]. The Illinois Department of Aging (IDOA) uses eight categories to define elder abuse: 1) physical abuse; 2) sexual abuse; 3) emotional abuse; 4) confinement; 5) passive neglect; 6) willful deprivation; 7) financial exploitation; and 8) self- neglect [10]. One of the responsibilities of IDOA is to maintain an elder abuse hotline and contract with state agencies to respond to these calls. Elder abuse investigators

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from these contracted agencies were recruited and interviewed for this study. The Office on Violence Against Women (OVAW), federal counterpart to NCEA, is responsible for the implementation of the VAWA Act of 2005 to reduce violence against women. The federal law defines domestic violence as “a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner. Domestic violence can be physical, sexual, emotional, economic, or psychological actions or threats of actions that influence another person. This definition includes any behaviors that intimidate, manipulate, humiliate, isolate, frighten, terrorize, coerce, threaten, blame, hurt, injure, or wound someone” [11]. The Illinois Domestic Violence Act’s legal definition of domestic violence in the state of Illinois includes: 1) Physical abuse; 2) Threats that put you in fear of physical harm; 3) Unlawful imprisonment; 4) Harassment; 5) Stalking; 6) Intimidation of a dependent; and 7) Interference with personal liberty (http://www.womenslaw.org/IL/ IL_how_to.htm#2) [12]. The Illinois Attorney General’s Office identifies perpetrators as persons who have or had a relationship with their abusers, such as family members related by blood or marriage; current or former spouses; current or former boyfriends or girlfriends; parents of the victims’ children; and current or former room-mates [13]. The definition does include intimate partner violence with the inclusion of current or past spouses and/or boy/girlfriends. Very little distinction can be seen between these definitions. In fact, one can characterize abuse of older women as elder domestic violence. Both definitions contain physical, emotional and financial abuse. In both definitions, the perpetrators are persons who have a close relationship with the victim. The distinction between the two definitions is the age of the victim, a distinct characteristic of elder abuse. In addition, elder abuse definitions do not seem to address the intent of the perpetrator, whereas domestic violence definitions include the explicit intent of the perpetrator to gain or maintain power and control. While large differences in the definitions of each type of abuse do not seem to exist, the statute related to elder abuse specifies contributing factors that include: 1) stress created by the care needs of the elder; 2) inadequate financial resources; 3) isolation and lack of emotional support for elders and their caregivers; and 4) existing family problems and dynamics such as substance abuse, mental illness of

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the abusers and continued domestic violence in later life [14]. A discussion of contributing factors is not evident in the statute related to domestic violence. Overlapping definitions that more closely capture the intersection of domestic violence and elder abuse for older abused women in their later years appear in the literature as well. Brandl and Raymond [7] suggest the term ‘abuse in later life’ to encompass both aspects of elder abuse and domestic violence. These authors view “abuse in later life as domestic violence AND a distinct subset of elder abuse” (p.9) [7]. Brandl and Cook-Daniels [2] define ‘abuse in later life’ as domestic abuse among both males and females, at a cutoff age of 50 and older, an age younger than other definitions. Similar to other definitions, the perpetrator is someone known to the victim through a trusted and ongoing relationship. The person can be a spouse, partner, other family members, or a caretaker. Older victims abused by family members or caretakers do not meet statutory definitions of domestic violence in some states which more strictly define abuse by an intimate partner. Abuse in later life can be viewed from two perspectives. The first perspective defines this abuse as a pattern of behavior for couples from their earlier relationship years into their later years. “Domestic violence grown old” is used to define “Some couples [who] have had violent interactions for decades, and the abuse continues as couples age” [13]. Research recognizes older battered women as victims of domestic violence throughout the progression of long-standing relationships (National [15]. The victim is usually the woman who is now more vulnerable to injury due to her increased age. There is also the scenario where the pattern abuse has not occurred in the earlier adult years of the abused woman but begins in the abused woman’s later years. The major reason found in the elder abuse literature stated the likely reason for abuse was due to caregiver stress and the woman’s partner responsible for the care of his now frail partner dependent on him for her care. Later elder abuse literature has turned away from the dependence of the victim as the likely cause: rather the characteristics of the partner/abuser [1, 7, 16]. Due to this shift in looking at the causes other than caregiver stress of elder abuse in later years, the major theory, dynamics of power and control, found in domestic violence were also now being

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found in the elder abuse literature. Lundy and Grossman [17] confirm that research in the most recent years has turned away from the explanation of elder abuse as caregiver stress and placed the focus on “ongoing domestic violence, based on power and control, that is long term battering of a woman” (p.89) [17]. In rarer circumstances, an older woman may enter into a new relationship that turns into an abuse situation without ever experiencing abuse in earlier years. Thus, this type of abuse fits the pattern of power and control by an intimate partner yet at an age of 60 or above it can fit the criteria of abuse in the elder abuse system. Brandl [2] describes the scenario of abuse in a new relationship for the older women now single because of divorce, widowhood, or never married. Brandl’s definition of this type of older women experiencing abuse in later life can be an example of a case that benefits from both systems. Domestic violence agencies might provide such services as safety planning, legal advocacy and support groups while elder abuse investigators can reduce isolation through senior centers and community activities. In summary, women who experience abuse in later life do not always easily fit into the definition of neither domestic violence nor elder abuse as defined by local or state governments. Professionals in elder abuse and domestic violence may perceive and define the same case differently which impacts how potential interventions are considered and chosen [18]. In this next section, I will explore the prevalence rates of older women who experience abuse by an intimate partner. PREVALENCE RATES OF IPV AMONG OLDER ABUSED WOMEN This section attempts to investigate the prevalence rates of intimate partner violence among women age 50 years and older. It is difficult to provide an accurate rate given that these women are counted within each system without a specific category that identifies them by both their age and perpetrator. A barrier to determining prevalence rates on elder abuse is the varying definitions of age in research studies which can encompass a lower limit as low as 50 and as high as 65 years old [2]. Another challenge is distinguishing violence by intimate partners versus other family members and caretakers. Lastly, statistics on elder abuse cover a wide range of type of abuse not of all which are common in domestic

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violence (i.e. financial exploitations and active or passive neglect). Table 1 provides an overview of the findings for the limited studies available on the prevalence of IPV among older women. Table 1. Prevalence studies on intimate partner violence among older women. Source

Prevalence

2004 Survey of State Adult Protective Services (APS) report in 11 responding states [15].

Older abused women were more probable to be victims (65.7%) in 15 reporting states. Most alleged perpetrators were adult children (32.6%), their spouse or intimate partner (11.3%), family members (21.5%).

The 1995 Violence Against Women Act was responsible for creating the National Violence Hotline [19].

Reported “In 2005, out of a total of 201,064 calls, some 7,172, or 3.5 percent, of callers were age 55+”.

Statistics by age were found for the Ages 45-54 = 9.6% in 2000 and 10.6% in 2005; 55-64 = state of West Virginia by Lester et al. 2.4% in 2000 and 3.7% in 2005, 65+ = 1.7% in 2000 and 1.8% in from the years 2000 to 2005 [20]. 2005 . Lundy and Grossman report services Findings of 1057 persons 65 years and over (90.1% female) who from domestic violence agencies in sought services “represents only 0.84% of the total population of Illinois from 1990 to 1995 [17]. service users” (p. 9). Approximately 51.3% of perpetrators classified as intimate partner. Almost all the women age 65 & over reported emotional abuse (95.9%), physical abuse (71.0%), and sexual abuse (4.9%). Bonomi et al. in a random sample of 370 women 65 years and older [21].

2.2% reported IPV last year and 3.5% in the previous five years; and 26.5% reported any type of IPV within their lifetime (p. 37).

Fisher and Regan surveyed 8422 women age 60 and older The women were recruited from care clinics serving southwest Ohio, Indiana and Kentucky living in a community dwelling [22].

Nearly half (47%) mentioned at least one type of abuse; emotional or psychological abuse 45%; intimidation or threat of physical abuse-12%; physical-4%; control-4%; sexual-3%; since the age of 55. Repeated abuse occurred for 21% of those who were sexually abused to 47% experiencing psychological or emotional abuse. Abuse occurred more often since they turned 55 years for physical abuse (41%) at the low end to control abuse (88%) at the high end. For the remaining four types of abuse, intimate partners were perpetrators of sexual abuse (73%). control abuse (56%). and threatened abuse. Physical abuse (21%) was divided between intimate partners (39%) and relatives (45%).

Illinois Department of Aging 2007 statistics [10].

Findings report that approximately 23% of physical abuse, 22% of sexual abuse, 16% of emotional abuse, 16% of neglect, 15% of confinement and 4% of exploitation was perpetrated by a spouse

In summary, here are some of the highlights we learn from these studies. While intimate partner violence occurs and needs to be addressed, its occurrence is not common in prevalence studies of elder abuse in research studies using data from

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adult protective services. It is very difficult to find age breakdown in statistics reported by domestic violence data sources, thus, making it difficult to determine prevalence of IPV among older women. Similar to elder abuse statistics, abuse of older women by an intimate partner is not the majority of cases reported in domestic violence data sources. More research is needed in this area especially using probabilitysampling techniques to investigate the prevalence of abuse among older women [23] (page 71). Thus, the rate of intimate partner violence of older women is hard to distinguish in both elder abuse and domestic violence statistics and research studies. However, it is safe to assume IPV occurs at a low rate for elder abuse investigators who tend to see older women victimized by non-intimate perpetrators such as adult children and family members other than spouse. Likewise in the domestic violence service system, the rate of IPV is low since younger women and their children find their way into this system more often. COLLABORATION BETWEEN APS AND DVS Elder abuse and domestic violence intersect when older women are seeking assistance for abuse at the hands of their intimate partner. Two major developments necessitate the collaboration between these two service networks when serving older abused women [1]. One, the population is rapidly aging as baby boomers reach old age so domestic violence programs are increasingly being faced with older victims. Two, research on elder abuse points more to the abuse as a result of abusers using power and control tactics and less as a consequence of caregiver stress. Some professionals in APS have come to realize the need for training on domestic violence, cycle of violence and power and control tactics. Likewise, some domestic violence workers have come to realize the need for training on aging issues and the age-specific services needed by the older abused woman. Service providers from a variety of other disciplines such as sexual assault, criminal justice, faith-based, substance abuse, physical and mental health must all collaborate in order to better recognize the dynamics of abuse in later life and be able to formulate a collaborative response to best fit the needs of the older

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woman [2]. Best practice dictates that domestic violence and elder abuse work collaboratively to provide services to older abused victims [18]. Authorities in the field are not calling for either system to provide services beyond their expertise. APS does not have to create shelters and domestic violence programs do not have to expand to in-home services when the other system already provides those services successfully. Domestic violence programs should not dismiss a case because of the age of the woman. These women have a right to these services and legal advocacy which should be accessible and age-appropriate to meet their needs such as support groups for exclusively older women. Likewise, adult protective services should consult with domestic violence programs when providing services to older victims of family violence related to issues such as safety planning and legal services. The two service networks need to share their skills, assets and resources to create a coordinated response for older abused women. The result will be a better use of limited resources and less fragmentation of service delivery. A major attempt to create a formal dialogue between adult protective service and domestic violence networks took place in 2004. National Adult Protective Services, a partner of NCEA, initiated collaborative meetings of state and local APS and DVD administrators. The purpose was to gain a better understanding of the current state of collaboration or lack of collaboration between these two service networks [1]. The resulting report focused on barriers to collaboration. A major barrier is the use of language and definitions which reflect their differing paradigms as discussed earlier. First, Age is a factor which determines eligibility. APS: usually by law, APS services can only serve women 60 years and older. DVS: While there is no law in existence that dictates age for domestic violence programs, they serve primarily women under the age of 60. Second, how language is used when they refer to their clients. APS: identifies the older abused woman as a ‘client’ or ‘victim’. while DVS: calls them ‘survivors’ which speaks to how they view these women and their situation in turn, impacting their choice of interventions. Third, how is language used to describe the incidents. APS uses such terms as ‘abuse, mistreatment, and exploitation’ while DVS characterizes abuse as ‘crime, theft, and violence’ highlighting a softer versus harsher approach to dealing with the abusive situation. Fourth, they differ in the use of the term

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intimacy. In DVS while ‘intimate’ may mean closeness in an ongoing sexual relationship with one’s partner, in APS ‘intimate’ may mean spouse or partner but most often ‘sexual’ which can characterize the occurrence of rape by one’s adult son or caregiver in elder abuse. Fifth, linguistic differences can open up the door for miscommunication. APS focuses more on the characteristics of the victim such as age, sex and living arrangement. DVS looks at situational components such as the perpetrator’s sense of entitlement, his pattern of intimidation and control, and the nature of trust derived from the ongoing relationship. Several studies suggest that APS professionals collaborate with advocates from domestic violence agencies on cross training [1, 24 - 26]; however, many barriers prevent collaborative cross training between the two networks. Barriers include such practical areas as lack of funding, lack of time, heavy caseloads, and staff shortages. On a positive note, the report did discover many areas of successful collaboration between APS and DV professionals [1]. The challenge is to continue to “design innovative programs that can be sustained and replicated throughout the country” (p.26) [1]. Older abused women are being increasingly recognized as victims of abuse, thus, our mission is to continue to develop cutting-edge programs that recognize the need for collaboration in order to better meet their needs. Purpose of Research Study This research study describes how professionals from both networks, elder abuse investigators and domestic violence workers, identify intimate partner violence among older abused women. Areas explored are the paradigms under which they investigate and deliver services, their definition of both terms, elder abuse and domestic violence, and the depth of their experience with this particular type of abuse, IPV, among women 50 years of age and older. This study gives a voice to those on the forefront who interact with the older abused woman to better understand these systems as well as how they view the older abused woman and each other’s role. METHOD Qualitative methods were chosen to allow depth and flexibility when interviewing

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the professionals which is appropriate when exploring their views and perceptions about serving older women who have been abused. Qualitative research is an appropriate mode of observation for research that appears to defy cuantificación and recognizes in-depth exploration of attitudes and behaviors [27]. While there is literature on comparing and contrasting the service delivery models in each service system, the voice of the professionals involved in delivering these services has not been heard. Thus, an open-ended, self-created interview guide was used to elicit information about their experiences on working with this population. The Institutional Review Board at Loyola University Chicago approved the study after permission was granted by the Illinois Department of Aging to interview their elder abuse investigators. The two major agencies responsible for handling hotline calls and investigations in the Chicago metropolitan area served as the sampling frame for elder abuse investigators. The two agencies provided a list of investigators at their various locations throughout the metropolitan area. Domestic violence agencies known to the researcher and the School of Social Work at Loyola University were contacted to participate in the study. Agencies identified workers who had experience in working with older victims to ensure the participants were appropriate informants for the study. An attempt was made to obtain professionals who represented a diversity of clients and catchments areas in the metropolitan area. In addition, the intention was to interview only one to two participants at each location. The elder abuse investigators represented city and suburbs in the north, northwest, south and southwest regions of the metropolitan area. The location of the domestic violence agencies paralleled these catchment areas. Their populations reflected a diverse range of clients based on race, ethnicity and income levels. Participation was voluntary. Participants were contacted by phone or email. The interview guide and consent form were shared with each prospective participant. If interested, an interview was scheduled at their place of employment. Participants signed the consent forms to agree to participate and allow the interview to be taped. The interview guide was created by the researcher to address a number of aspects shared by both groups of professionals in order to compare how they viewed and handled cases of abuse experienced by older women. The interview began with

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questions about their level of education, training, and experience in their field. The prevalence of intimate partner violence in their work history was explored. Next, the participants were asked to define elder abuse and domestic violence. There are other major areas contained in the semi-structured interview guide, however, this chapter focuses only on how the two groups of professionals view and define abuse among older women. SAMPLE Education Level, Training, and Experience The final sample was comprised of seven elder abuse investigators and nine domestic violence workers (N=16). All seven elder abuse investigators held masters’ degrees; five were in social work, one in criminology and one in community service administration. Elder abuse investigators had a range of 5 to 16 years of experience reflecting their dedication to both their agency and the field. Once hired, training is provided by Illinois Department of Aging at the state capitol. Six of the nine domestic violence workers also held graduate degrees; four in social work, one in counseling, and one in clinical psychology. Two of the three remaining workers held undergraduate degrees in social work and business; the third worker held no college degree. The domestic violence workers with graduate degrees held positions as therapists in counseling agencies while the remaining three served in administrative and direct service roles at an agency that provided shelter, court advocacy, housing and counseling services. The four domestic violence therapists were interested in women’s studies while in school, interned at the agency and/or volunteered with domestic violence survivors. In the state of Illinois, domestic violence workers must complete 40 hour training. In addition, they can proceed and become a certified domestic violence professional (CDVP) which requires an exam and a continuing education requirement similar to the Licensed Clinical Social Work certification. Requirements for CDVP are completion of 40 hour training and 150 hours of employment at an ICDVP site where the domestic violence worker either provides direct service or supervises direct service. Two MSWS were licensed (one in pursuit); one MSW was a CDVP. Domestic

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violence workers were also dedicated to their field; with the exception of two workers, the remaining participants had served double digit years (range of 10 to 30+ years) in domestic violence. RESULTS Domestic Violence and Elder Abuse After the participants were asked about their educational level, training and years of experience, the next question was: “I am doing a study of older abused women, women who are 50 years of age and older. I am particularly interested in those older women who have been abused by an intimate partner. How would you define domestic violence? How would you define elder abuse?”

Responses to these questions are described in the following section. Definition of Domestic Violence by Domestic Violence Workers Domestic violence workers were true to their field in defining domestic violence in terms of power and control dynamics. These quotes illustrate their response: “…domestic violence…I would probably define as an abuse of power and control”

Intent of the abuse as perpetrated by the abuser is an important factor to look at (“…what’s the intention of the use of violence.”). Along with the dynamics of domestic violence, the workers also mentioned the different types of abuse such as “…it could be emotional, physical, sexual abuse, financial abuse, a series of tactics that occur in a pattern.” Many workers also referred to the definition of domestic violence found in the state Illinois Violence Act (“…follows criteria from the IDVA”). The older woman’s relationship to the perpetrator can be of an intimate nature but not necessarily, however, a relationship does need to exist between the two parties. “…it has to be someone that is, that you are related to in some way or who

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have been in a relationship with.”

While the perpetrator can be a member of the household, it is not a requirement of the definition of domestic violence (“Don’t need to live together…”). One participant stated the definition comes from the woman herself: “We don’t really care what the nature of the family relationship is as long as she identifies herself as victim of family violence.”

In summary, the definition of domestic violence by workers in this field included such essential items as use power and control, a wide range of types of abuse found in the law, the existence of a relationship with the perpetrator whether it is intimate or not, and regardless of whether they living together or not. Definition of Domestic Violence by Elder Abuse Investigators A theme among elder abuse investigators is the lack of difference in how they defined elder abuse and domestic violence. Elder abuse investigators did not provide definitions of domestic violence but rather contrasted domestic violence to elder abuse. Many investigators expressed similarities of domestic violence to elder abuse: “They are very similar, actually. Elder abuse we basically have several categories: physical abuse, sexual abuse, emotional abuse, confinement, passive neglect, willful deprivation and financial exploitation. I think that all of these types of abuse can be considered a form of domestic violence (with exception of passive neglect).”

One investigator presents a counterpoint to the above theme: “… a little broader, there’s more that encompasses what elder abuse is…”

The distinction between their definitions of elder abuse and domestic violence is the age of the abuse woman. For APS, referrals where the woman who is 60 years and older is defined as elder abuse: “…Just really because she’s over 60. That’s really the only difference …”

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In summary, the elder abuse investigators do not provide a distinct definition of domestic violence but rather compare and contrast it to elder abuse. Thus, they do not address some common definitional issues of domestic violence such as power and control dynamics and intent and identity of the abuser. Their only area of distinction is the age of the abused woman. Definition of Elder Abuse by Elder Abuse Investigators Elder abuse investigators are quick to define elder abuse within the requirements of their authoritative body: “Well obviously we work under the Illinois Department of Aging’s Program rules”

They follow specific criteria that classify a case as elder abuse such as living arrangement: “…live in the community…their residence, a senior apartment, a relative’s home, they cannot be in a nursing home…we do not handle supportive living.”

and relationship of abuser to the abused: “…you have to have some kind of relationship with…and causing harm to the abused.” “…there has to be somebody that’s perpetrating something against them. Or not doing something that they should in the case of neglect or deprivation case.”

In addition, the elder abuse investigators recite the eight types of abuse and neglect as stated in the law. Interestingly, a few investigators singled out financial abuse as falling under the jurisdiction of elder abuse only. The criteria most often mentioned and prominent in their decision making on whether a case can be classified as elder abuse is age (“…individual has to be over the age of 60…”). Age is the defining criterion which determines whether a case is an elder abuse case under their jurisdiction. Several quotes from the elder

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abuse investigators support their territorial position: “…the term we sometimes use is abuse grown old. So technically is domestic violence, but because of the age, it ends up in the elder abuse program.”

Even when elder abuse investigators acknowledge the need for domestic violence services for some older abused women, they admit their age defines which program they are referred to: “If they’re over the age of 60, it automatically for us becomes elder abuse. It might be a domestic violence grown old but it’s still defined as elder abuse….(When asked if they would refer the case if domestic violence) We handle the case. Because again, it’s an elder abuse case.”

Only one investigator presented a counterpoint to the criteria of age: “Well, they could have it and we could have it. Because they’re elderly and in the community and meet the criteria, we get it, would get it and it could go to domestic violence, the police, it could be all of those. We try to work together.”

In summary, elder abuse investigators follow very closely the criteria of their authoritative body. If the dynamics of the abuse meet their criteria, especially age, it is assumed by the elder abuse investigator to fall under the jurisdiction of elder abuse even if they define a case as domestic violence or domestic violence grown old. Investigators see similarities yet the age of the woman and referral to IDOA substantiates the case as elder abuse. Besides age, they also closely follow other criteria outlined by the department such as the Elder Abuse Act’s eight types of abuse and neglect as outlined in the Elder Abuse Act, living arrangement in the community, a known alleged abuser and their intent to harm. Definition of Elder Abuse by Domestic Violence Workers The responses from the domestic violence workers differ from their elder abuse counterparts in how they view and define elder abuse. Though they perceive similarities between domestic violence and elder abuse, more emphasis on the

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differences. Instead of elder abuse being similar or a subset of domestic violence, their perception of elder abuse is more expansive in terms of perpetrators and types of abuse and neglect: “…could have domestic violence to that age group, but perhaps more maybe likely could be financial, maybe someone who is controlling their finances…” “…not just spousal abuse but it could be children being abusive to their parent as well.”

One worker did perceive the similarity between the two types of abuse in terms of the dynamics of power and control: “…very similar tactics that are used to control or manipulate another person.” …overlaps with domestic violence definitely with all the dynamics that take place…”

Workers also identify some of the same elements mentioned by the elder abuse investigators that characterize elder abuse such as living situation: “It doesn’t necessarily have to be someone you are living with it could be someone you are interacting with on a regular basis a primary caretaker and adult child…”

A range of types of abuse: “Any kind of abuse that we would imagine as domestic violence, whether it’s physical, emotional, financial…”

relationship status: “…close member of the family or a friend of the family. It could be anyone intimate with that person…” and age of the abused woman and their mandate to report elder abuse: “I believe if she’s 60 plus…”

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would think it’s 60. But it might be even 65.” “…with the Elder Abuse Act we are mandated to report.”

One worker disagreed with the age criterion in cases of intimate partner violence. “we of course are mandated reporters in forms of elder abuse but if it’s –there’s this line, if it’s a partner, if it’s truly domestic violence, we can’t report that but if it’s anybody else that’s abusing the person then yeah.”

Another worker held a similar view on ownership of their responsibility for the case: “(When asked do you distinguish elder abuse case, do you categorize them, you know, the abuse, neglect, whatever, occurred by a family member versus more like intimate partner.). “No, not really, because of that fact that’s it all classified as domestic violence which is what we do.”

One domestic violence worker who works at an agency that has two separate programs serving both elder abuse victims and domestic violence survivors made an interesting observation when assisting intake workers on where to refer an incoming call. The distinction is the older woman’s ability to advocate for herself. “But what I define as the difference in terms of where they fit in the program or whether I make a mandatory report is if the elder in that situation can advocate for themselves.”

The worker presents two scenarios to highlight this distinction: “So when it’s a situation where, you know, we’ve received calls here where the woman is 60 some, her husband isn’t giving her medications, her husband isn’t letting her out of the home, she’s not going to doctor’s appointments. Um and she, she doesn’t have mobility, maybe she’s not able to speak, she’s not able to make a phone call. That to me is an example of elder abuse.” “However, I’ve received calls from individuals where the woman is 60 some, um she’s been married for quite some time, she’s able to advocate for

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herself, talk, she’s mobile, she could probably take the steps to leave that marriage um she may or may not at a point where she wants to do that. But there is this abuse that’s occurring, the difference with domestic violence is that she’s able to advocate for herself. ”

A domestic violence worker in a shelter setting stated: “We trust them to become stewards of their own safety.”

Lastly, an interesting observation by one worker was the dependence of the victim in the abusive situation. This can be viewed as another way to state the older woman cannot advocate for herself: “…elder abuse is anyone who is responsible for your overall well-being or caretaking who is abusive toward you…”

In summary, domestic violence workers point out more differences between elder abuse and domestic violence. Their description of elder abuse encompasses a wider range of alleged perpetrators and types of abuse and neglect. They are similar in identifying specific criteria mentioned by the elder abuse investigators such as dynamics of power and control, known perpetrator, and living situation. Age is not necessarily a definitive criterion for elder abuse; some workers still retain ownership of a case of an older abused woman identified as domestic violence. An interesting note of distinction in determining which system is appropriate is the older woman’s ability to be independent and ability to advocate for herself. Domestic Violence Grown Old and Abuse in Late Life Two specific terms used in the literature to describe violence among older women is ‘domestic violence grown old’ where abuse has been in existence for decades in the both woman’s younger years as well as recent years. Abuse that has occurred currently with no occurrence in earlier years is termed ‘abuse in later life’. This next section describes the two groups of professionals, APS and DVS, define these terms in their work with older women.

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Domestic Violence Workers’ Views ‘Domestic violence grown old’ is described as long term marriages usually with one partner: “She’s probably been in a very bad marriage for a very long time. I had very seldom seen a case of a happily married couple and when he turns 65 he becomes an abuser.”

Physical abuse has occurred in the early years of their relationship. However, physical abuse, while it has not necessarily ceased for all couples, has generally moved into emotional and verbal abuse. “…60 plus, they would generally tell me that the physical abuse hasn’t occurred for quite some time when they were in their 20s and 30s…ongoing issue of emotional and verbal abuse to the extent where you see them very isolated where their self-esteem has been so impacted after decades of hearing that, where they feel that their options are really limited.”

Domestic violence workers view this type of abuse as a time when the couple reevaluates relationships and their situation in their older age: “…they have all this time together (kids grown). And he got all this regret, he’s got all these issues, maybe he’s realizing that his relationship with his kids isn’t what he wanted um so you know there’s this tension.”

One disturbing observation was the continuation of abuse in later life for the older victim at the hands of her children: “But with some of them, in addition, they have children who are being abusive to them. And some of the – even the husband – they’re around the husband and the children kind of picked up where he left off—and that kind I see a lot”.

‘Abuse in later life’, whether it is a recent dating relationship or a marriage late in life, are rarely observed by domestic violence workers: “(Do you ever see some of the older women who don’t have an abusive

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past?) I haven’t, no”

However, two workers did observe ‘abuse in later life’ and provided the following scenarios: “…when she came to us because actually had been married and in a number of relationships that were healthy and non-violent and then met a man in her I think late 40s or early 50s after her husband had passed away…and over the course of 15 year relationship….he became physically aggressive and she decided to end the relationship…”

In summary, ‘Domestic Violence Grown Old’ is the more common type of abuse the workers see among older adults compared to dating relationships or new abuse in older age. Abuse generally has moved from physical to emotional and verbal. It is a time for these older abused women, and their husbands to seek help or reevaluate their situation after their children are grown and health issues are emerging. Abuse in later life, where abuse is reported for the first time, occurs less frequently. Elder Abuse Investigators’ Views Investigators also define ‘domestic violence grown old’ as a situation that has been occurring over the years between a husband and wife: “…same issues that were present…whatever kept them in the relationship –or keeping them doesn’t change just because they turn 60.”

Elder abuse investigators also view ‘domestic violence grown old’ as a time of reevaluation but more in terms of explaining why help is being finally being sought at this time in their life: “…sometimes it’s just the families have reached that point they feel that they need to reach out to somebody else. That whatever they tried in the past hasn’t worked and now they want to reach out to somebody else for help or maybe, um. Maybe now it’s come to the attention of the police in a different way, maybe more frequent attacks or um, the police have become concerned because of their age or their physical impairments, or their

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cognitive impairments, and that’s come to the attention of the senior citizen’s police officers…”

Elder abuse investigators continue to emphasize the age of the older abused women in defining ‘domestic violence grown old’. Due to the age of the older abused woman the case now falls under their jurisdiction. Domestic violence now becomes elder abuse: “We call it domestic violence carrying over into once she turns 60, when she’s 59 it’s called domestic violence, and only because she has turned 60 is it called elder abuse…”

New issues related to aging such as dementia may be aggravating the conditions that contributed to physical abuse in the past: “…he still drinks and he probably has some dementia as well…don’t think they understand that they are getting into dementia intermix with either drinking or just violence behavior.”

Dementia and physical illness experienced by the abuser may also result in reversed roles where the abused may become the abuser. Now she is in a caregiving role of the husband who perpetrated violence against her in the early years of their marriage and may feel guilty and forced in remain in this relationship: “…she’s abused by her husband and he is in a wheel chair, but he’s always been abusive. Verbally abusive, I think physically at one point but not now. And she feels stuck, trapped, taking care of him.”

While the investigators can recall ‘domestic violence grown old’ cases they frequently do not appear in their caseload since other perpetrators are more common: “…well certainly it exists but it’s not the hugest, biggest type of elder abuse…”

Similarly, only one investigator recalled an ‘abuse in later life’ case:

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“I think she was like 70, and had this boyfriend who was abusive to her and she wasn't doing anything about it.”

In summary, elder abuse investigators also define ‘domestic violence grown old’ as long term marriages where abuse has occurred for decades. It is also seen as a time of re-evaluation, however, this reflection leads them to seek help. Aging factors such as dementia or physical disability and illness worsens the abusive situation, makes the victim become the abuser, or makes the victim feel trapped in her new role of caretaker. Age continues to be a primary theme; once the abused woman becomes 60 years old, she comes under their care as a victim of elder abuse. While ‘domestic violence grown old’ and ‘abuse in later life’ have been observed in their work, neither of these types of cases are often seen. Abuse by adult children and caretakers are more common. Prevalence of Intimate Partner Violence among Older Women This study focused on older women experiencing intimate partner violence given the theory that older women abused by their intimate partners would ‘fall between the cracks’ due to their age. It was feared that they would be ignored by those working in domestic violence and not understood by those in elder abuse. These professionals were asked how often they did work with older women who had been abused at the hands of their spouse. Their responses are found below: Domestic Violence Workers Professionals holding positions as therapists at domestic violence agencies have counseled a few abused women 50 years and older in their caseloads: “…I’ve worked with two women who are over 50, and I also have a couple of clients in their upper 40s each.” .“…I can think of 4 or 5 (over 60 years of age)…um I’ve had a number of clients also who are in theirr 50s.”

Domestic violence workers at shelters and hotlines work with older abused women but the percentages are small:

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“…last fiscal year figures and reported there were 4 clients at the shelter over the age of 50…we do not get a lot of calls from this age groupprobably embarrassed and ashamed.”

In summary, this type of case is not typical of domestic violence caseloads. Younger women (and their children) are more reflective of their client caseload. Elder Abuse Investigators Elder abuse investigators responding to referral from the state’ hotline number also seldom see intimate partner violence among older couples: “…well it certainly exists but it’s not the hugest, the biggest type of elder abuse…..maybe 15 to 20%.”

In summary, intimate partner violence is also not typical of elder abuse caseloads. Investigators do seem to have some experience working with this type of case but it does not represent the majority of their cases. Collaboration with Domestic Violence Agencies Elder abuse investigators voiced extensively their experience with domestic violence agencies. It is a common practice for the investigator to be a member of a multidisciplinary team in the community. “So each month we meet with our multi-disciplinary team and bring forth um, cases that we’re stuck on…and so we have a member um, from one of the domestic violence agencies.”

Elder abuse investigators do call upon domestic violence agencies for services commonly provided by domestic violence agencies: “We’ll call one of the domestic violence agencies to see if they can meet the client at court to help them through the process. Um, I’ve given information to my clients about the domestic violence agency …to bring up a community awareness about services that are available, whether or not they, they generally don’t act on any of them, but it’s to let them know that there

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is some other type of help out there.”

Some investigators experience adverse situations with the domestic violence system particularly in the area of shelters. Shelters do not cater to the older woman; in addition, workers face issues of confidentiality when trying to followup on a referral to the shelter. “…to try and get somebody into their shelters they don’t like it because they don’t feel it mixes for younger women.”

Investigators also point out transportation issues hamper their collaboration with domestic violence agencies: “They will not go to the client’s home, that’s been our biggest issue.”

A lone exception is an elder abuse investigator who has a good working relationship with the local domestic violence agency as confirmed by a domestic violence worker at that agency who participated in the study. “There’s been a lot of research coming out that caregiver stress is causing all of this abuse, oh yeah. And then in all of the training we’ve been to that are linked with the domestic violence community and we started talking to them about it, at least with the state administrators of the program, they started opening our eyes to the role that domestic violence has in this. I don’t know the system calls it caregiver stress, we call it control issues, so we started looking at these cases with caregiver stress and thinking about what to do with it.”

Looking into the future, one elder abuse investigator looks forward to better networking and more understanding by domestic violence workers on the needs of elderly clients. “…we feel like through the domestic violence program, that there needs to be a better networking and a better understanding from the domestic violence programs about the needs of the elderly, and how are they bridging

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that gap? That their focus is obviously, tends to be more on the younger, the under 60, …not the impaired senior…they don’t seem to be able to provide the services that those seniors need through the domestic violence system.”

A hopeful sign for collaborations was a project between domestic violence court and the Department of Aging: ”Well, I left out a referral source because it is relatively new. We are now getting reports from domestic violence court and through the Department on Aging…the domestic violence court system has just, recently has been in contact with the Department on Aging to try and support individuals that are seeking, um, non-criminal orders of protection. When it comes to a certain judge, she will then notify the Department of Aging that a person over the age of 60 has come into the court seeking an order of protection. The Department of Aging then notifies the elder abuse provider, for us to go out and visit with this person who’s seeking an order of protection.”

Elder abuse investigators are aware of domestic violence agencies in their community due to their joint participation on multi-disciplinary committees. They are willing to contact these agencies or refer their clients. However, they stress problems with transportation and shelters which once again highlights the capability of the older woman to function independently as a distinguishing factor of which system she should be referred to. On a positive note, they are open for better networking and collaboration. Collaboration with the Department of Aging In comparison, few domestic violence workers voiced their experience with the Department of Aging. One worker stated their agency did not work with the Department of Aging while one worker stated: “went to a seminar early on, but I didn’t really learn much…I always had a lot of information from years of providing services (to seniors).”

An administrator at one domestic violence agency appeared to have a good working relationship with their local elder abuse agency:

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“We do the legal piece…order of protection and criminal charges…they do the case management stuff…a lot of our elder abuse cases we refer to them…like home health visits, meals on wheels, any other kind of services that the elderly might need.”

Looking into the future, a domestic violence counselor expressed interest in learning how the two systems could collaborate: “I would be real curious to hear about other ways that elder abuse places and domestic violence are collaborating…there are probably ways when I’ve worked with women 60 plus that I don’t know all the resources, medically, you know, health wise and it’s very possible that the elder abuse crisis workers who go in may not always think about or address the dynamic, maybe the patterns, maybe the history, maybe some of the clinical things that deal with guilt or denial or the impact of self-esteem and you know may not always hear people kind of do the little pieces of information I think domestic violence counselors say, where we tend to provide information about what is domestic violence, what are the patterns, why are people abusive, you know some of that stuff that I think is so helpful for survivors to hear, I can see that sometimes being missing, maybe in the elder abuse area, or maybe not, cause that might be my ignorance.”

Domestic violence workers expressed less contact with elder abuse investigators. Since their clients may be more independent and able to advocate for themselves, it is possible that their clients were seen as not needing the type of services provided by elder abuse agencies. However, one domestic violence worker has found a way to work collaboratively while another expressed interest in future collaborations to better serve their clients. Summary of Findings Professionals in both fields found common ground in defining domestic violence and elder abuse. A number of similarities exist within their definitions such as the types of abuse experienced, the recognition that it involves an established relationship with the abuser, and laws that mandate their intervention. A distinguishing factor, especially one held strongly by elder abuse investigators, is the age of the woman. Regardless of the dynamics of a case of alleged abuse or

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neglect, elder abuse investigators are more territorial about women 60 years and older falling under their jurisdiction. Domestic violence workers also consider age as a factor; however, more emphasis is placed on the woman’s ability to advocate for her. Older abused women come to the attention of these systems in a number of ways: domestic violence grown old (continued abuse from earlier years), abuse in later life (new abusive situations in intimate relationships where none has existed in previous relationships) and caregiver stress. Caregiver stress may initiate abusive relationships, exacerbate previous abuse, or even reverse the role of perpetrator/victim in later life. These routes taken to abuse in later life require more than age alone to be the primary factor for services. The woman’s ability to advocate for herself should also determine whether services from the domestic violence field are appropriate even if the elder abuse investigator retains ownership of the case. In addition, while caregiver stress may be the obvious issue bringing the case to attention in the elder abuse service system, prior abuse needs to be investigated to determine the dynamics of power and control. The failing physical health of the abused woman may be another factor for how the abuser continues to exude power and control over her. Domestic violence workers in this study expressed their mandate to report ‘elder abuse’, however, it is not clear where domestic violence ends and elder abuse begins. Their lack of experience in working with older women may in some ways be due to their lack of perception that older abused women fall under their jurisdiction as well; therefore, while not spoken, there is an implied use of age as a distinguishing factor in determining services. There seems to be a lack of partnership between these two professions when it comes to serving the older abused woman. More importantly, some attempts at working relationships were adversarial. However, the door remains open to future collaboration. DISCUSSION It is important to note the limitations of this study. First, the agencies recruited are restricted to one major urban city. While there is a rich mix within the metropolitan area, all areas of the city are not represented. Second, the convenience sample includes professionals who volunteered for the study. Given that they volunteered, these were workers who were interested in sharing their experience in working with older abused women and may not represent the

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experience of all professionals. Third, as with the findings of other qualitative studies, this study cannot be generalized to all professionals who provide elder abuse and domestic violence services. Despite these limitations, the results suggest some interesting trends Current relationships among these two professions need work in order for those in each system to better understand each other and their respective responsibilities with special attention to the older abused woman who may cross both their door steps. Elder abuse investigators may serve on an inter-disciplinary team which includes a domestic violence professional but there is a lack of data in this study demonstrating successful relationships. Domestic violence workers tend to see a particular type of older abused woman, one who is independent and has the capability to advocate for herself, thus, may be unaware of older abused women who are frailer but facing abuse at the hands of their spouses. Otto and Quinn would advocate for this collaborative relationship since in old age the intersection of caregiver stress with domestic violence grown old demand the expertise of both systems [1]. While both groups of workers seem to agree about definitional issues of abuse and neglect, they tend to be suspicious or hold certain beliefs about how the other one operates in this field. Besides the need to educate elder abuse investigators on the dynamics of power and control and the domestic violence workers on issues of aging, both professions need to recognize the strengths of each other’s profession and what they ‘can bring to the table’. Territorial barriers created by the authoritative bodies overseeing these systems, such as age of the client, have prevented a collaborative atmosphere in serving this target population. Therefore, much work is needed to demonstrate to professionals in both fields that they can successfully work together within their own systems. Brandl would support an interdisciplinary approach in order to not recreate and duplicate resources but combine and work together to serve this population [18]. A difficult task is to prove to them the benefits of collaboration for themselves and their clients before the education process begins because the motivation has to be in place for real change to occur. Neither group is assisting a large number of older survivors of IPV among their caseloads (as seen in the prevalence studies highlighted in Table 1) so it may not necessary to develop separate programs especially in these times of competition for funding and budget cuts. Other

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independent mechanisms should be considered to join these two professions with a common goal of providing the best evidence-based practice for older abused women to ensure their clients are receiving the necessary interventions to make them safe and healthy and to improve their quality of life in later years. RECOMMENDATIONS This section makes recommendations which will lead to creating a more informed, collaborative response between the major two systems in responding to the needs of the older abuse woman. Training Training for elder abuse investigators and domestic violence workers should include educational content and theories from both disciplines. All domestic violence workers, no matter their educational level or degreeee, must complete the required training in their jurisdiction. For example, requirements for Illinois Certified Domestic Violence Professional include completion of 40 hour training at an approved site, completion of 150 hours of direct service or supervision at an approved ICDVP site, and successful completion of the exam [28]. Workers are required to be certified every two years with the completion of 30 Continuing Education Units within the two year period. The exam does cover the Elder Abuse and Neglect Act (Legal Issues) and older batter women (Challenges in Serving Specific Victims). Professionals holding advanced degrees and licensure should use universities and other bodies who offer continuing education to continue their training in this area. These institutions may also be available to review their curriculum for training professional staff. Collaborative training should include raising awareness of the each other’s responsibilities, how the two professions’ model of causation of abuse in later life may conflict and their intervention techniques, and how to resolve conflict through successful partnerships on a case by case basis. Fisher & Regan [22] reflect researchers in the field who suggest cross training. The benefits would be that APS workers would be more educated about resources that domestic violence professionals provide to domestic violence victims and similarly DVS workers would be more educated about resources available from

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APS workers [1]. This model of cross training currently exists in the local city police department where this study took place. Police officers hold the position of senior officer or domestic violence liaison officer specializing in working with issues among the elderly and family violence respectively. These two positions are cross trained allowing them to carry out each other’s responsibility which is a fitting model to deal with violence among the elderly. Elder abuse investigators and domestic violence workers do not necessarily have to be able to perform each other’s duties, however, they can learn through cross training on how to best handle the older abused woman who is a victim of IPV and how they might consult with each other. Understanding the content of each other’s discipline alone is not sufficient. Training where professionals from both disciplines attend collaborative training could promote positive working relationships once they return to their respective offices. Resources currently exist making this training possible for many agencies. One example is the National Clearinghouse on Abuse in Later Life (NCALL) which was created in 1999 by the Wisconsin Coalition Against Domestic Violence (WCADV funded by the Department of Justice's Office on Violence Against Women [29]. This organization has a national reputation in providing leadership in the area of technical assistance, consultation and training that bridges domestic violence, sexual assault and elder abuse and neglect. Their training materials are also available for those who want to educate themselves in this area. An example is the Sage-Boston Collaborative in Massachusetts, State agencies and representatives come from three major bodies: domestic violence advocacy program, elder service agencies, and criminal justice. Their mission is to improve the response to the plight of older women experiencing IPV. Experts in aging and domestic violence services co-present a collective curriculum incorporating expertise from their respective disciplines. These experts created “train the trainer” workshops for workers in the fields of domestic violence, senior services and criminal justice. Their intention of this collaborative effort is to build capacity within the community to better serve older abused women facing IPV. Positive collaborative training practices have also been reported in the literature in Colorado, Minnesota and Wisconsin (p. 24-25) [1]. Lastly, many professionals working with this population hold advanced degrees in

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social work and related fields. Thus, training can come earlier through their graduate education. Curriculum development related to domestic violence and the special needs of older abused women in such professions as social work, law, nursing, health and medicine has long been advocated for [30]. The Council on Social Work Education Gero-Ed Center, funded by the John A. Hartford Foundation, is a current example of an effort to promote aging competencies and expertise in the social work curriculum. Courses focusing on family violence benefit from this initiative by adding content to prepare students to work effectively with older women who have been abused by an intimate partner. Establish Collaborative Mechanisms Even though older abused women are a growing population, the majority of caseloads of current APS and DVS professionals are not older women who are victims of intimate partner violence. Therefore, the creation of new programs is not necessarily the solution for this target group, particularly with the lack of available funds, but rather how to create new collaborative mechanisms with the existing resources. The Minnesota Network on Abuse in Later Life is a free standing statewide network which encompasses more than just DVS and APS. It also includes personnel in the fields of law enforcement, court, health care, community senior service, and representatives from communities of color and tribal organizations [30]. Through informational exchanges annual statewide meetings, training, continuing education credits, and a library of materials and videos, these professionals are brought together on how to work collaboratively to help older abused women. On a micro local level, partnerships need to be fortified to provide opportunities for APS and DVS personnel to form a rapport and effective working relationship. If an APS worker knows a DVS worker on a personal level, the APS worker will be more likely to contact the DVS worker regarding resources. This partnership would be the next step taken after training occurs so workers are made aware of how the two professions can cooperate in a manner which best serves their clients; and leadership occurs which openly supports partnerships. Currently, the APS model used by the elder abuse investigators in this study includes a multidisciplinary team which includes law enforcement, community agency providers,

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and financial officials as well as a domestic violence professional. A recommendation is for this model to be expanded, or develop a specific subcommittee, to periodically examine and consult on cases involving IPV of older women. Several other states (Colorado, New Hampshire, Texas, and Wisconsin) have such collaborative efforts to bridge APS and DVS in serving older women experiencing IPV [1], (p. 19). These initiatives include joint response teams by both APS and DVS on specific cases such as joint visits to older abused women who are hospitalized or reciprocal consultation teams available upon request. Leadership Collaboration cannot take place without leadership. Otto and Quinn [1] investigated barriers to collaboration and recognized the need of strong and committed leadership. Leadership at Universities has the capacity to bridge these two professions. Schools of social work educate future professionals in both fields. These schools have academics with teaching and research interests in both aging and family violence. Faculty has ties in the community with DVS and APS agencies through their research efforts, training opportunities, and field internships. They represent a neutral party for the two professions and can act as a go-between by working with these administrations to provide them training, resources, and consultation.. Many older women experience domestic violence grown old suffering from abuse and intimidation by their partner.. Now they have come to the attention of the system; maybe they are seeking help for the first time or this has been a pattern in their lives. Some receive family support, somee do not want to burden their children, and for some their children have become abusive. Decisions to remain or leave an abuse relationship are complicated for older women who may have health and financial concerns, and generational norms about the sacredness of their marriage vows. However, these women, at this point in their lives, deserve to live out their remaining years with harmony and tranquility. Therefore, the systems they reach out to them have the responsibility to provide them the most appropriate interventions to achieve a successful outcome. Since

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intimate partner violence in later life lies in both the possible jurisdiction of both the elder abuse and domestic violence systems, it is the change, these two systems work collaboratively guaranteeing the safety and healthy well-being of older abused women in their remaining years. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

Otto J, Quinn K. Barriers to Promising Practices for Collaboration Between Adult Protective Services and Domestic Violence Programs 2007. Available from:http://www.ncea.aoa.gov/ncearoot/ main_site/pdf/BarrierstoPromisingPractices.pdf.

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Brandl B, Cook-Daniels L. Domestic Abuse in Later Life 2002. Available from:http://www.ncea. aoa.gov/ncearoot/main_site/pdf/BarrierstoPromisingPractices.pdf.

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Wood EF. The Availability and Utility of Inter disciplinary Data on Elder Abuse: A White Paper For the National Centeron Elder Abuse 2006. Available from: http://www.ncea.aoa.gov /ncearoot/Main_Site

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Dunlop B, Rothman M, Condon K, Hebert K, Martinez I. Elder abuse: risk factors and use of case data to improve policy and practice. J Elder Abuse Negl 2000; 12(3/4): 95-122.

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CHAPTER 8

Spirituality and Older Women: The Journey Home to Self Holly Nelson-Becker* and M. Carlean Gilbert School of Social Work, Loyola University Chicago, Chicago, USA Abstract: The self unfolds through a life long journey of becoming and making meaning. This chapter elucidates the role of spirituality in older women’s lives. First it sets the context for the role of religion, addressing demographics and research on gender and faith. The distinction between spirituality and religion is discussed. Spiritual struggle and suffering are identified as normative experiences. In a section on theory and models, feminism, gerotranscendence, and narrative are described as they relate to spirituality. Three modern writers and one research participant provide examples of the variation that may occur on a spiritual path. Discussion provides further elaboration and guidance to mental health professionals who want to address and support the spiritual lives of women. Aging invites women to come alive in new ways as they honor the journey home to their authentic self, a self that is always larger than what they can dream.

Keywords: Older women, Religion, Spirituality. SPIRITUALITY AND OLDER WOMEN: THE JOURNEY HOME TO SELF [In older ages] one has ample time to face everything one has had, been, done: gather them all in: the things that come from outside, and those from inside. . . . When you truly possess all you have been and done, you are fierce with reality -Florida Scott-Maxwell (p.41-42) [1]. Spirituality of women at older ages is concerned with understanding past events * Corresponding author Holly Nelson-Becker: School of Social Work, Loyola University Chicago, USA; Tel: 312915-7008; Fax: (301) 347-5573; E-mail: [email protected]

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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and future possibilities in light of the eternal now. This search for understanding welcomes the difficult experiences of life as much as time spent in gentle merriment with friends and family. Finding home, or the place where one is at a place of deep peace, is an archetype for returning to soul. Home is an essential space of safety, nurture, and creativity. However, in the turbulence of family life, vulnerabilities are also exploited and grave injury sometimes ensues. Ultimately the challenges become essential points of learning, kindling for growth. Spirituality is a lens that sees connection, value in relationships, and a persistent search for meaning and identity through the changing social, emotional, and physical landscape of older years. As women age, they limit their social networks to contacts that are more satisfying and emotionally fulfilling [2]. They select social partners for their environment who are not peripheral but instead are highly engaged in their lives at multiple levels. They develop emotional resilience. Older women increase their ability to manage ambiguity and uncertainty through change in their emotional stance toward difficult situations [3], especially if they are unable to alter the situation itself. Aging women may experience chronic illnesses, but universally express their desire to age in place with supports instead of moving into assisted living or nursing care facilities [4, 5]. Florida Scott-Maxwell, a female pioneer in psychoanalysis, herself embodied a resilient path through life, living in an enriched way. As a young woman, born in 1883, she was educated mostly at home with only brief periods spent in public classrooms. At age 15 she left home to build a life on the New York City stage, but she exited that life at age 20 to write short stories. In 1910 she married and moved with her partner to his native Scotland, tending to women’s suffrage, plays, and children. In 1933, she became a psychoanalyst, studying under Jung and practicing in clinics in the UK. In some ways her life, viewed from a distance, seems to be made of distinctive threads, yet in the end she fashioned them together in a whole cloth that revealed her as an intense observer of aging. “Life does not accommodate you, it shatters you. It is meant to, and it couldn't do it better” (p.65) [1]. While women may hope for an easy, tranquil life that is not what most collect. As Scott-Maxwell suggests, they are better for the struggle.

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This chapter elucidates the role of spirituality in women’s lives. First it sets the context for the role of religion in the lives of older adults. Then it addresses demographics and research on gender and faith. The distinction between spirituality and religion is discussed. Spiritual struggle and suffering are identified as normative experiences. In a section on theory and models, feminism, gerotranscendence, and narrative theory are described as they relate to spirituality. Three modern writers and one research participant provide examples of the variation that may occur on a spiritual path. The Discussion section provides further elaboration and finally guidance to mental health professionals who want to address and support the spiritual lives of women. OLDER PEOPLE AND RELIGION In the US, 82% of women consider religion important to any extent compared to 73% of men [6]. In terms of the practice of prayer, 79% of women indicate they pray while only 62% of men report such behavior [7]. Christian religions currently predominate in America: 84% of adults ages 60-69 and 88% over age 70 express an affiliation with a faith under this category [8]. Still, with increasing immigration, the numbers of older adults proclaiming affiliation with world religions will grow. On a global context, religious expressions and levels of faith adherence vary considerably. The term world religions refer to faith traditions that predominate in other countries, such as Hinduism in India and Buddhism in Japan. The UK has long hosted a more diverse population than the US. In the UK, only 72% of the populace reports holding Christian affiliation and 15% endorses atheism or agnosticism [2]. This diversity and complexity has probably made it even more difficult to address religion and spirituality in the public sphere in the UK than in the US. As cohorts age, spirituality will likely become a more universally endorsed term than religion for new generations of older adults across the globe [9]. Even though religious affiliation remains high, frequency of attendance tends to diminish with age due to increasing frailty and transportation hurdles. While there is a general view in society that older adults may become more religious as they age, this has not been supported by empirical evidence [10]. In fact, for those who acknowledge a spiritual journey, it is often marked by steps forward and

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backward, and is recursive in many aspects. GENDER, SPIRITUALITY, AND RELIGION DEMOGRAPHICS Changing demographic patterns in society suggest that is it especially important to pay attention to specific needs of older women. The 2010 Census showed that women age 65 and over account for 14.6% of the population while men in the same category are 11.4% [11]. Forty percent of older women were widows in 2010, and almost half of women over age 75 (47%) lived alone [12]. Widowhood is more common among older women than older men as men are more likely to die at younger ages, leaving women to live out their remaining years as singles. Thus it is helpful to explore the resources available to older women, many of whom are unattached to a partner that can help them achieve a satisfying life. RESEARCH ON GENDER, SPIRITUALITY, AND RELIGION Data from research on religion show that women express stronger religious beliefs and are more deeply involved in religion than men [13, 14]. Some theories suggest that this association is due to the marginalization and vulnerability of women, encouraged by dependence on a theistic power as well as a greater sociological need for social relationship, often found in faith communities. In most western Christian religions, women outnumber men by a ratio of three to two [15]. Of those active in spirituality, women were found to make up 80% of participants and leaders [16]. A number of studies have investigated gender and faith. While the following studies do not represent a national random sample of all ethnic groups, they do highlight a positive association among religion, spirituality, and women for some groups. In a US nationally representative sample of 1141 older African Americans and Black Caribbeans, women reported higher levels of religious and spiritual involvement than men in both groups [17]. Women who rated their faith as highly important in a study of 271 older adults were more likely to have better emotional functioning than women with lower faith importance [18]. Further, women with higher levels of pain were more likely to use religious coping [18]. A small nonrandom study of older women found that most saw their health as a gift from God [19]. A study of 210 older women residing in a rural high-rise facility found

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that all identified spirituality as a coping mechanism for health and aging [20]. Others acknowledge that differences between men and women’s views of spirituality vary according to what is measured, but overall there is support for gender difference in the larger role of spirituality and religion in women’s lives [21 - 23]. SPIRITUALITY AND RELIGION Many older adults consider the terms spirituality and religion to be largely interchangeable [24]. However, some see spirituality as multifaceted and quite separate from religion or religious expression. For instance some individuals who identify as being culturally Jewish claim a spiritual self while eschewing any credence in a supreme being, partly due to a sense of abandonment during the Holocaust [25]. Yet others who are primarily grounded in a faith tradition read spirituality as a subset of religious life. Spirituality is the quest to find ultimate truth about meaning and one’s relationship with the sacred or transcendent. It is often viewed as subjective and individual, and may have theistic or nontheistic elements. Spirituality refers to a “search for significance” in ways one considers sacred [26]. Spirituality reflects one’s deepest sense of value, meaning, connections with ultimate reality, or the ground of all being [27, 28]. One’s spiritual life develops through relationships with self, others, a Transcendent Power, and all living beings. Spiritual expression may include experiences of a transpersonal nature and behaviors such as prayer or meditation in which one finds support and meaning [29]. Mystical experiences may occur. For example, in bereavement, some clients report experiencing dreams of deceased loved ones or a feeling of their presence. Spirituality and religion generally are seen to encompass different concepts, though for some older women the terms may be merged [24, 30 - 33]. Religion is usually perceived as a meaning system that includes rituals, beliefs, and ethical values accepted by a community and communicated across time [32, 34]. There is usually an institutional aspect to religious life that involves outer associations while spirituality may or may not be expressed in organized religion. From a holistic perspective, spirituality can be viewed as essential or core nature;

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one domain among the psychological, biological, emotional, and social aspects of a person; or the overarching content surrounding one’s being [34, 35]. Some Jewish holocaust survivors and others identify spiritual expression in their relationship to the natural world. “What I see out my window gives me a sense of eternity and my place in it” explained one older Jewish woman who could glimpse a small corner of Lake Michigan (p.95) [24]. Finally, at the end of life, liminal experiences of dreams, visions of deceased loved ones, or a felt sense of abiding connection with preceding and following generations may be common expressions of spirituality. Under some definitional stances of spirituality, agnostics and atheists may find a place. According to qualitative data from 18 countries [36], agnostics and atheists experience spirituality and its connections to quality of life in a way that helps them manage adversity Agnostics doubt the existence of a sacred power, but they may invest belief in something beyond the material world. Similarly, atheists decline belief in any higher source but may have a personal philosophy that leads them to invest in causes like environmentalism or feminism. This form of investment may be viewed by some as fitting within a broadly inclusive definition of spirituality. SPIRITUAL STRUGGLE AND SUFFERING Spiritual struggle and suffering form part of life’s experiences. At older ages women may adapt to life limiting chronic illness, diminishing networks of friends and peer cohorts, and often loss of a life partner. Every life stage seems to offer its own challenge. Jung [37] suggests, “We cannot live the afternoon of life according to the programme of life’s morning—for what was great in the morning will be little at evening, and what in the morning was true will at evening have become a lie” (para 783). Jung speculated that tasks of the first half of life include ego development and relating to the outer world, while the second half of life involves the difficult work of developing the true or inner self. Through struggle, the self moves into a cohesive state where the shadow sides and inchoate or immature bits of personality are owned. Another way of stating this is that the good parts and the bad parts of identity are both recognized.

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A key aspect of spiritual struggle includes suffering. Questions of theodicy emerge, or why a God who is good allows bad things to happen in people’s lives. Depending on life philosophy, people find many different kinds of responses: evil may merely be a deprivation of the good not caused by a just God but simply allowed to occur, evil is punishment, suffering has a role in helping people appreciate beauty around them, God chooses not to intervene in a created world, or life is mystery but God is present within it [38]. For women with no theistic belief, bad things may be thought to occur randomly. Women search for answers that will provide them with the meaning they seek. Although suffering is never sought, there is often something new that is gained when the old way of life must be discarded. Scott-Maxwell observes that barriers are lowered, “and I knew what I had not known before” (p.7) [1]. A painting by Monet, The Seine at Vetheuil, Effect of Sun after the Rain, evidences effects of glistening light shining on village and river, after what the viewer imagines was a rumbling thunderstorm. This after-the-rain effect of changed understanding and clarity is one that can come into life after struggle. However, not every woman who moves through her life course is positively changed by it. Some do remain submerged in the water of their fear, doubt, and pain. Though spiritual struggle is usually about personal inner perceptions of the outer world, successful resolution may lead to more positive outer relationships. Shea denotes, “A fully human and fully embodied spirituality is always about integrity and respect, loving care, and justice for the other” [39]. THEORY AND MODELS There are several theoretical perspectives and models that apply well to older women’s spirituality. Feminist theory, the theory of gerotranscendence, and narrative theory are all applied theories that can be useful for providing a lens for psychotherapeutic work. For some women, understanding their own points of spiritual growth and spiritual suffering are keys to reaching healing from whatever trauma they may have faced. Although religion and spirituality are not salient for some, when these areas surface as being of concern in a general assessment protocol and the client would like to make them a focus of therapy, then it is useful for clinicians to understand where they might begin treatment. Feminism offers a particular sensitivity to and vision for the ways that society has been

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socially constructed. It seeks to have female voices included in accepted historical, political, and cultural compendiums of knowledge. Gerotranscendence [40] is a concept that centers on older adult spirituality as it unfolds through aging. Narrative therapy is one clinical model that supports inclusion of the spiritual domain as women reflect back on their life meaning. Feminist Theory Feminism considers some of the inherent societal structures that feature domination of major systems of thought and action by men [41]. This form of critique seeks to identify and name attitudes, language, and behavior that have marginalized the realities of women. This action is not intended to reverse roles of domination but rather to equalize processes and open space for gender neutral stances. In many faith traditions, patriarchal issues predominate. In Judaism and Christianity, most key religious figures were male such as the prophet Moses and Paul, an apostle. Many other major world religions that have survived to this day have male founders such as Mohammed or the Buddha. In the Genesis creation story, woman was created second, emerging out of the side of Adam, the first man. In Greek mythology, Gaia was the ancestral mother of all life. It seems clear that most of the stories about women have been submerged, though some key figures, such as the role of Esther, who saved the Jewish people from destruction, and Mary, who was the mother of Jesus, remain important as teaching stories and as objects of devotion. However, what may give women a familiar place in religious faith is the emphasis on feminine values such as compassion, humility, authenticity, building unique selfhood, and self-sacrifice [14, 42]. In Buddhism, Kuan Yin is the goddess of Compassion; she is the one who hears the cries of the world and becomes one with its inhabitants in their plight. In the modern turn towards spirituality, the search for well-being involves attention to body-min-spirit domains which may or may not include faith-based models [43]. Gerotranscendence Gerotranscendence is a term applied by Tornstam [40, 44] to signal a shift in perspective as one ages, moving from a materialistic reality to a more universal

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and all-encompassing one. In interviews with older Swedish participants, he uncovered changes in three areas: the self, social exchanges, and sense of the cosmos. Related to self was a decreasing concern about the self, less focus on physical appearance, and an increased interest in introspection and meditation. Social exchanges were pared to the ones that were most functional and satisfying, similar to Carstensen’s approach mentioned in the Introduction of this chapter. Related to sense of the cosmos was an increased felt connection to past and future generations and a unity of time and space. Relationship to death and dying also began to alter as people gained more comfort with facing their own eventual dying. .

Erikson [45], in his epigenetic view of life course development, suggested that the last stage of life involved a challenge between achieving ego integrity versus despair. Erikson suggests that the quest for meaning, containing multiple levels of awareness and creativity, may be part of the developmental process for many individuals in the final stages of life when they achieve gerotranscendence, subsumed under the idea of ego integrity [45]. Joan Erikson finished revision of her husband’s original manuscript after his death, though he had begun work on it. In this text, she refers to Tornstam’s work as gerotranscendance, signifying the joyful aspects of the aging process as one begins to relinquish some of aging’s expectations of limits, including a leap over fear of dying. At the end of life, with less time remaining than passed, many older people come to a place where they do not fear death itself, though they may be afraid of suffering [46]. Narrative Theory Narrative therapy offers a clinical theoretical perspective that includes consideration of the spiritual aspects of older women [47]. It emphasizes the need to place the source of problems outside the person so that one can explore contributory factors, such as the dominant discourses in society that suggest particular ways of viewing a situation. In this storytelling approach, older women can reflect on their lives in a way that enables them to see strengths and appreciate parts of their character that went under-recognized. Social workers and counselors can listen for the sparkling moments that were sustaining and help reframe client stories into stories of empowerment. Spiritual stories are often subjugated stories.

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This partly occurs because spiritual experience often transpires beyond the power of language to adequately capture the feelings and heightened cognitions that result. Narrative theory, in its regard for internal sources of support and unique understandings, encourages women to author their own stories rather than coauthor them according to societal standards. Spiritual Models Spirituality has been conceptualized variously. In social work it has been seen as one key dimension having equal weight among the biopsychosocial spiritual dimensions of an individual [35]. Further, it may be the inner core or central dimension of a person or by contrast the all-encompassing sphere that surrounds all other aspects [34]. A systems perspective is suggested by Lee et al. [43] who consider a system to be in balance or out of balance. Balance is maintained through an integrative component that consists of internal and external states as well as the self-other dimension. Treatment is enhanced through rebalancing, transforming, and becoming more who one is. Carr [48] suggests a process model of spiritual care in nursing that includes receptivity, positivity, humanity, and competency. There are many authors who developed or applied spiritual models of care [49] and this is an area that is likely to see further discussion and expansion. MODERN WOMEN ON SPIRITUALITY A number of writers have penned personal tales of unusual aspects of their spiritual journeys. Because of their ability to be reflective about their life journey and to commit to authoring stories of their personal lives, they have opened avenues for understanding significant changes that women undergo developmentally as they face challenges. What follows is discussion from the writing of Sue Monk Kidd, Joan Chittister, and Mary Pipher. We have also included responses from a research participant in a study of religious and spiritual coping at older ages. These women position themselves in various places on the spirituality and religion continuua and so offer different views of changes in their lives.

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Sue’s Story Some may know Kidd through her more popular books such as The Secret Life of Bees and the Mermaid’s Chair. A graduate of the Iowa Writer’s workshop, she wrote for Christian publications and was raised in the Southern Baptist church [50]. She attended an Episcopal church and spent retreats at Catholic monasteries, gradually expanding her sense of the spiritual through meditation practice and reading mystical writers such as Meister Eckhart, Julian of Norwich, and Thomas Merton. She begins her memoir with a vignette about visiting her daughter in the store where her daughter worked. Her daughter was on the floor, filling shelves, when two men approached and one commented that was how he liked to see a woman, on her knees. Kidd walked up, identified herself as the mother and told them that even though they might like to see women in that pose, “(Women) don’t belong there!” (p.9) [50]. She perceived that as a pivotal moment for herself in speaking up and out for feminism in general and in particular for her daughter’s selfesteem. Previously she had stayed solidly within the boundaries of her Christian tradition, which espoused a limited role for women who could be head of women’s committees, but not much more. Gradually she claimed the power to shed her conditioned life and to listen to the feminine soul which she describes as the “repository of the Divine Feminine, her deep source, her . . . guiding wisdom, and power” (p.20) [50]. This included forgiveness of self for not being born male and not having access to male sources of power. She identified the feminine wound as bearing unconsciously a culturally-prescribed identity of victimhood. A conference she attended on Jung led to a joyous beach gathering with other women, celebrating the richness of their lives as women. Her friend was on a similar journey and together they met often and assisted each other to discover and name new levels of spiritual meaning for women. Alongside this, she found herself painting pictures of women without hands without feet, without a mouth, unable to voice the feminine self. In her reading she discovered a tradition in the early Christian church that treated women with equality. She left the Baptist faith and joined the Episcopal Church, but that was not enough. She entered a period of struggle working through changes in her marriage relationship and trying to find a

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place of meaning for herself. Eventually she reached an understanding of the value of oneness and interconnection, of nature as sacred, and of liberation, or affirmation of the value and dignity for all humans, in what she terms “weconsciousness” (p.154) [50]. As she grounded herself in myths, symbols, understanding of her dreams, times of retreat, and readings of feminine spiritual experience, she healed from her anger and changed direction. In mid to late life, she entered a different path of creativity by writing fiction and living out the “common acts of life” (p.222) [50]. Sue has moved in her life from being immersed in a conservative religious tradition to embracing a non-religious, spiritual approach. This represents a dynamic shift in her spiritual sensibilities, one that many of her friends did not fully understand and found difficult to support. Joan’s Story “Sue Monk Kidd comes from the same place I do—from a theological ghetto. The only difference is that hers was Baptist and mine was Roman Catholic. Each of us, every tradition, has to some extent been arrogant, exclusive, and controlling. Now two women like ourselves have found God outside the denominational pale as well as in our own churches. That’s dangerous—both for the denomination and for us. But for me, at least, there is no going back to any totalitarianism that calls itself religion” (p.11) [51].

Joan Chittister, a Benedictine Sister of Erie, Pennsylvania, is a prolific and internationally known lecturer, columnist, and author of over 40 books. Advocating for the poor and working for peace and social justice, Sister Joan is co-chair of the Global Peace Initiative of Women, a partner organization of the United Nations, and also the executive director of Benetvision, a research and resource center for contemporary spirituality. Sister Joan is past president of the Leadership Conference of Women Religious (LCWR), whose 1500 members currently represent 80 per cent of the 57,000 women religious in the US [52]. After the 1965 close of the Second Vatican Council, Joan and women religious leaders shifted their focus from transmitting church doctrine to addressing the social injustices of poverty and marginalization of populations including women. Following years of growing tension, however, the Vatican issued a report in

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spring, 2012 reprimanding the LCWR for espousing “radical feminist” views and ordering clergy to monitor the organization [53]. Joan’s life-long questioning of Catholic rules revealed itself in early childhood. Arriving home from school, six-year-old Joan was troubled even then by the injustice promulgated by her religious teachers who implied that her Presbyterian step-father would not go to heaven [51]. Joan’s father died when she was three, and her young Catholic mother later had in an interfaith marriage with a good, religious, and hardworking man. From another experience she learned about endurance, balance between what one desires and can do, and the ability to make a wonderful life regardless of circumstances. Barely a month after becoming a Benedictine novitiate, sixteen-year-old Joan contracted polio and faced the possibility of not realizing her religious vocation. After spending months in an iron lung and enduring four years of treatment for paralysis of her arm and leg, she recovered [54]. Later, as an adult with extensive theological training, Joan experienced a lifechanging event. Attending a conference of women religious in Rome, she questioned the edict that daily attendance at Mass and receipt of the Eucharist (the sacrament of communion) was essential for the sisters even though many parishes had no access to them to due to the shortage of priests. The cardinal asserted that the sisters must accept the Eucharist of desire. Sister Joan cited that day when she was told that she could “have the Eucharist without having it, but had to go to it, nevertheless, when a priest was there” as the beginning of her conscious journey from religion to spirituality, from dogma to a “personal journey into God” (p.4) [51]. Viewing older adulthood as a precious time of being fully alive and experiencing wisdom, freedom, and enlightenment, Joan authored The Gift of Years [55] in which she writes about the purposefulness of aging. She describes the shifts in relationships, meaning, fears, and joys that are possible as the physical dimensions of lives decrease and the spiritual dimensions increase. “Age,” she writes, “is the antidote to personal destruction, the call to spiritual growth, because age finally brings us to the point where there is nowhere else to go but inside for comfort, inside for wealth, inside for the things that really count. It is the damping-down

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time of life. Our passions and flaws anger, jealousy, envy, pride—subside to the point that we begin to awaken to another whole level of life. The interior life.” (p.69) [55]. Joan Chittester, coming out of a very defined religious tradition and centered within that tradition in her worklife as well, was able to shape her growing spiritual openness in a way that also taught others to be comfortable expanding their views. She was able to do this from within this same tradition and help push it to its edges to better relate to needs of women. Mary’s Story Mary Pipher, a writer as well as a psychologist, is known for her books Reviving Ophelia and Another Country, the latter about her work with older people and their families. She was living comfortably in her various roles until two of her books became best sellers. As an introvert, the pace of her life gradually became overwhelming, disorienting, and she entered a period of depression. She indicates she now understands that most people experience crisis of some form and while not everyone experiences growth, growth is the only successful treatment for it. If individuals can reflect on the learning that spills over from life, “All experience can be redemptive” (p.13) [56]. Ms. Pipher was a member of the Unitarian Church which has a history of generating questions about faith and embracing social activism. In order to heal, she sought time with her family backpacking, hiking, and camping. She succinctly wrote that “Books, people, and going outdoors have long been my trinity of coping” (p. 141) [56]. She described herself as having an inability to disappoint and thus the high demands made on her by a public eager to learn more about views illustrated by her writing became extremely difficult. Unprepared for public life, she felt her foundational identity erode. As a small-town person, when success arrived she didn’t own a cell phone or know how to hail a cab. She carried an oversized sense of responsibility for the people who asked her questions, to the bookstores who sold them, and to all those who stocked her books. Her natural anxiety heightened; exhaustion fatigued her body, and her self-criticism engulfed her to the point of crisis. In response, she simplified her life, participated in her own therapy and yoga, and “synchronized her rhythms” (p.167) [56] with slower ones grounded in the earth.

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Later she began to view her state of depression as a spiritual crisis rather than a mental health one (p.176) [56]. She explored Buddhism and was captivated by the concepts of mindfulness, interconnectedness, and a sense of the world as right in itself. She began to re-inhabit her body and to find greater self-acceptance and self-compassion through meditative practice. She learned to release her anger and self-judgment, to soften towards herself, to listen, and to invite joy. She believes that religion calms us and connects us “to all of the world’s sufferers…It is often trauma that turns us toward the sacred, and it is the sacred that saves us” (p.176) [56]. Mary began from a very liberal religious/spiritual tradition and moved further along that path towards Buddhism and towards care and concern for ecology and protecting the earth. Arlene’s Story Arlene (name changed) told a story of both deprivation and strength in the context of a life that some people would call ordinary. When she attended school, there were few opportunities for black women. She reported that her daughter-in-law gave her a couple of books on black women and she was surprised when she learned about their extraordinary lives. In her high school, there were not even 25 black people. “We didn’t at that time consider ourselves to be segregated, but in a way we were. We didn’t participate in school activities. When my sister and I graduated, there were only about nine people who were black who graduated” [unpublished research data]. During the depression she and her husband, together with their children and the families of two of her sisters, lived in a single apartment. Her husband worked at candy store earning six dollars a week. The apartment cost 45 dollars or 15 dollars a month per family, but they decided to strike out on their own to thwart effects of parenting from family who were more strict. In 1931, Arlene joined a Methodist church, still carrying that membership card at the time of the interview. She called the pastor a remarkable person who influenced her life, though when he was moved to another congregation, she was discouraged from following him. She considered religion to be very important, but not denominations. “Some churches and some people believe you have to be Methodist or Baptist or whatever. I don’t feel that way because I don’t think God sees us in those categories.” As she got

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older her perspective had changed. A brother-in-law began attending a different faith and she and her sister had discouraged him. “We were the ones who were wrong. We wanted to change him. That wasn’t right. I believe if you learn to treat people right, that’s what God wants you to do.” She looked to prayer as a source of coping. “Prayer answers many things. My daughter was really put on the spot at a meeting.” Her daughter sat on the couch and talked to God as if he were sitting beside her. I’ve tried to do that with a problem. I can’t say that I’ve been able to do that, but I’ve noticed a difference in her thinking. I’ve tried to apply that. One night I put $400 down someplace and I couldn’t find that money. I know I had put it this drawer. The next day I had to go to my closet and I put my hands right on that money. I had to say, ‘Thank you Lord.’ I find myself saying thank you to Him a great deal because I am very forgetful. I think he has played a big part in my life, in my ability to raise my children.

Arlene revealed that she was able to accept her own aging. She had turned 90 in the year of the interview. “I must have had 50 cards in my mailbox. It made me do a lot of thinking. People were very nice to me, but it seems that every year I begin to have more physical problems.” She used to enjoy traveling. Although she couldn’t travel at the time of the interview, she said she continued to travel through television. She was thankful for the life she had lived and would be ready to die whenever it was her time. “There are times when I’m down in spirit. I tell my daughter sometimes, ‘Oh how I wish I could be here when you are 90 and see how you take all these things.’ But I’m grateful for my life.” She reported that much of the meaning in her life came from her family. Arlene had many difficulties in life, but her spirituality was a consistent source of nurturing throughout. Spiritual Stories Sue, Joan, and Mary, public figures and authors, and Arlene, a private individual, have lived an ostensibly spiritual and/or religious path. Sue found over time that her original conservative faith no longer fit her views at all and she embraced a faith that could encompass her growing view of the value of the sacred feminine.

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Joan, too, felt constrained by certain church edicts that seemed to support authority rather than spiritual intent. As her questions grew, she developed a spirituality that was broader than that of her faith, while still remaining in the faith. Mary already had a liberal faith leaning when her writing became wellknown. However, the resulting crisis led her to re-explore herself and history, and brought her into association with Buddhist teachings. Arlene, who unlike the other three women profiled here was not famous, lived in a large Midwestern city. Over time she had become more aware of how her race mattered in her life and may have obstructed opportunity. Still, she described an expanding experience of reliance on and appreciation for her faith in her old age. DISCUSSION It is important to emphasize that holding a sense of the spiritual self does not describe all older women. However, for many women over the age of 65 now, it does matter [14, 24, 30]. Deeply. Attention to a spiritual core that connects with whatever else may be outside the self helps women cope with change in a generally positive direction; change can be absorbed, adaptation is achieved, and meaning remains strong in a resilient response [57]. Although they interact with many people in a lifetime, it is their own experiences that are salient and that they can know best. What a woman has either dealt with, chosen not to deal with, or accepted becomes, in part, the definition of her life. One finds one’s own rhythm in suffering and redemption, failure and accomplishment, loss and gain. A spiritual framework can provide meaning through all the unexplained mysteries, emergent events, and unusual synchronicities in living. But that is not all; women connect across generations through common problems faced and resolved—whether differently or in similar fashion. The stories they live are the stories they share. Feminist approaches open a lens that makes room for women’s stories often marginalized in the past. Just as the barriers of color were not discussed outwardly in prior decades as mentioned in Arlene’s story, the historical power of women in religions and in archetypal myths was buried or at least unacknowledged. Sue’s story spoke of an increasing awareness of feminist symbols and their absence in her faith expression, leading to a denominational move. Joan, who struggled with

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polio in her youth, had the courage to push the edges of her faith and thus be the voice for many other women who were puzzled by gender limits of Catholicism. Mary found her own faith tradition to offer insufficient assistance in meeting her life challenge, so she began to incorporate Buddhist meditation practice. The stories highlighted here represent just a few of the many stories women carry that relate to either religion, spirituality or both. Spiritual development is a life long journey that is not linear. In fact, the path is marked by twists, turns and recursive efforts. It is only with age that one can look back and understand points of growth--the patience, courage, and endurance that allowed one to finally reach new ground. Gerotranscendence [40] carries the idea of healing some painful components of the self and becoming something more than one was at the beginning of life. It is awareness of the vitality that remains in older years and the contribution one has both given to and received from external sources. While this theory has yet to be broadly replicated, it does offer a more differentiated perspective of spiritual components beyond Erikson’s final stage of ego integrity versus despair. The self comes together or it does not, but perhaps the self is not all that is present towards the end of a life span. Instead, the connections made in a lifetime remain when what is known as the physical self dies. Narrative approaches form a good fit in working with women and women’s spirituality. Story-telling is what women do when they gather. When they allow others into their story through therapeutic questions, they can begin to shape the story in previously invisible ways, which bolster women’s strengths. Spiritual stories are not always the ones easiest to hear, for though they do take place in physical reality, they often include images, dreams, and thoughts that are hard to understand or that stretch belief. However, in staying with the story and externalizing problems, women can more readily own the story they have created with the particular foundations and raw material they were given. GUIDANCE FOR PROFESSIONALS There are a number of ways that social workers and other mental health professionals might support the spirituality of older women. These professionals

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do not themselves need to have a spiritual background to do this well. A key aspect is learning to formulate good questions. Examples of questions that open up spiritual areas for exploration can be found in Nelson-Becker, Nakashima and Canda [25, 58]. However, preliminary to asking questions about spirituality is to discern whether this area matters to an individual and then what terms such as faith, belief, religion, spirituality, or meaning are preferred. Assisting women to articulate their spiritual aspects of self, when that is acknowledged to be of value to them, can be a freeing experience as they will feel heard and known. At times these stories will not have been told at all previously, or told superficially. Exploring them at their depths can produce new understanding and meaning for life’s second half. It is also helpful to recognize that religious intersections of women’s spirituality have not always been helpful to women. Women have at times suffered under institutional religions. Further, talking about intimate aspects of spirituality may not have been well-received. Spiritual experience does not always lend itself well to linguistic expression. Professionals thus should do some preliminary explorations of their own biases to begin to know their limits and where they may encounter difficulty guiding a client. Referral may sometimes be a good approach, but if a therapeutic relationship is well-established, it is not always the best approach. However, locating another professional who may be well-versed in religious or spiritual issues and is willing to offer consultation can be ideal. Finally, spirituality is often best experienced through creative and artistic approaches. Time spent in solitude and listening is well rewarded. Journaling, writing poetry, drawing, painting, listening to or making music, and spending time in nature are a few pursuits that can help women heal, awaken, or come to new appreciation of their spiritual self. In all of these activities, there is a creative selfemptying that makes room for new awareness and a broader identity. Professionals can recommend these and other novel approaches to help women see the larger developmental opportunities in the second half of life. CONCLUSION Spiritual development follows a perennial invitation to conquer the heights of the

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doubts and fears inside the self. Attending to a spiritual path, making use of spiritual strengths and noting times of spiritual struggle, can help women better understand what gives meaning to their lives. Mental health professionals who are invited by clients to accompany them on this journey can note points where women have been oppressed by using a feminist stance. The theory of gerotranscendence suggests specific perspectives that older women who have safely navigated spiritual doubts may attain. Narrative theory empowers women to seek out the meaning of their own life story. Finally, sharing specific stories about other women can be particularly therapeutic. Thus, theories and stories can become some of the tools therapists use. The individual search for meaning assisted by a clinician make available inner wisdom that may not have been previously accessed. The journey inward becomes the journey outward into community when older women in turn mentor others. Through sharing their knowledge and skills mindfully, women come home to the heart of their soul. At that center, they can find a new integration and understanding of self. Aging invites women to come alive in new ways as they honor the journey home to their authentic self, a self that is always larger than what they can dream. Note: The authors wish to thank Jennifer Johannesson who assisted in preparation of this chapter. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

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CHAPTER 9

Methodological Challenges in Conducting Surveys with Mature Women Dianne Rucinski* Abt SRBI Inc., Public Health and Epidemiology, University of Illinois at Chicago, Chicago, USA Abstract: This chapter outlines the major challenges presented when conducting a survey with older women from a “total survey error” perspective. The total survey error perspective considers sampling error, coverage error, measurement error and nonresponse error in designing and executing a survey. Noting that multiple surveys are routinely conducted with mature populations for estimation, policy analyses, and program evaluation, the chapter discusses special circumstances that should be taken into account when mature women are in the sample or are the focal population. The chapter provides guidance in avoiding or mitigating error through design and adjustment.

Keywords: Mature women, Research methodology, Survey research. INTRODUCTION Surveys are one of the most widely employed tools for social research, policy planning, program implementation and evaluation. Surveys are frequently used to establish population estimates of health, social, and economic conditions of the elderly. Prior to, during and after community wide interventions social surveys are often used to determine program impact as well as program implementation. Population estimates are used to allocate resources. To be most useful, sample survey statistics must be valid and reliable. Estimates derived from sample surveys should fully reflect characteristics of the target * Corresponding author Dianne Rucinski: Institute for Health Research and Policy, University of Illinois at Chicago, USA; Tel: (301) 347-5573; E-mail: [email protected]

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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population. The methods employed to generate those sample statistics should yield consistent results when applied under consistent conditions. That is, the tools of measurement should yield the sample results when repeated on the sample population. The core population surveys of the Federal Statistical System, the American Community Survey, the Current Population Survey, the Survey of Income and Program Participation, the Panel Survey of Income Dynamics, the National Health Interview Survey, the Behavioral Risk Factor Surveillance System, and the Medical Expenditures Panel Survey are designed to represent the general population, including mature adults. Complementing these key sources of population estimates are surveys specially designed to represent mature populations. These include the Health and Retirement Survey, the Longitudinal Studies of Aging (LSOAs), National Longitudinal Surveys of Young and Mature Women, and the National Health and Aging Trends Study. Apart from generating population statistics, the execution of these surveys have richly informed our understanding of the general and special considerations that must be taken into account when conducting surveys with mature populations. TOTAL SURVEY ERROR In survey research, survey methodologists frequently refer to “Total Survey Error” when making survey design decisions. Total survey error includes sampling error, coverage error, measurement error, nonresponse error, and processing error. Most surveys are designed to minimize all of the types of the aforementioned errors at an acceptable cost [1]. This chapter focuses on whether and how the first four of the listed errors are particularly problematic for sample surveys of elderly respondents and suggest strategies for reducing these errors. The final source of error, processing error, does not present unique challenges in surveys of mature women. Sampling Error The goal of sample surveys as a research tool is to reliably and validly represent the population to which the results of the research can be generalized. This requires that sample selection methods are employed to reduce the influence of

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selection bias. Probability samples permit the use of inferential statistics. Conducting a survey that accurately reflects the target population means that each estimate based on survey data contains as little error or bias as possible. Achieving the smallest measurement bias is in part a function of survey design decisions that in turn are often dictated by the costs, time, and effort associated with using various survey techniques. Sampling error is the result of measuring a random sample instead of the whole population, varies with the size of the random sample, and is not differentially affected by the age of the population group. In the case of random samples, mathematical theory is used to assess the sampling error. Estimates from random samples can be accompanied by measures of the uncertainty associated with the estimate, such as standard error and confidence intervals. However, the use of convenience samples is common in certain areas of elder research. Convenience samples are used because of the cost of identifying and recruiting hard-to-reach or rare populations, the absence of good sampling frames, and the perceived high costs of screening and recruiting individuals to participate in a random sample survey. Hultsch, MacDonald, Hunter, Maitland and Dixon [2] found that only 10% of surveys of caregivers conducted between 1990 and 1998 were based on random selection methods. Caution should be exercised when interpreting or attempting to generalize research findings generated though nonprobability samples. In comparison to a randomly selected sample, convenience samples of caregivers are more likely to include caregivers who are married to and live with the care recipient, and are more likely to have higher levels of education and income [3]. These differences in sample representativeness often have important implications for key study variables. For example, Pruchno et al. [3] report that convenience sample respondents expressed higher levels of caregiver burden and increased signs of depression compared with respondents from a randomly selected sample. They speculate that respondents who were drawn to the convenience sample recruitment methods and volunteered for the study may have been more needy and overburdened than the probability sample. Respondent driven sampling (RDS) is a technique developed in the past decade to address what many researchers interested in studying rare populations for which

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exhaustive or relatively complete lists do not exist [4, 5]. Respondent driven sampling marries “snow-ball” sampling with mathematical theory to compensate for non-random selection methods. In its most basic form, respondents recruit their peers and researchers keep records of who recruited whom and their numbers of social contacts. Then, a mathematical model of the recruitment process weights the sample to compensate for non-random recruitment patterns. While this new approach is not yet widely employed in social research, it may be worth exploring in research on mature women when complete population lists do not exist. It is imperative, however, that survey data from non-probability selection methods not be used to construct population estimates or pseudo-confidence intervals. In most instances researchers do not have the ability to compare sample composition from convenience samples to randomly selected samples. Thus the kind and degree of selection bias is unknown. Therefore it is strongly recommended that random samples be used whenever possible, and limitations of convenience samples are acknowledged when they must be used. If time and resource constraints preclude the use of random selection, or when no reliable sampling frame is available, at minimum attributes of the convenience sample should be compared to population parameters in order to illustrate the degree to which the selected convenience sample differs from the target population. Coverage Error Coverage errors occur when not all elements or members of a population are included in a sampling fame, leading to an inability to contact portions of the population that should be included in the sample. Incomplete coverage in the sampling frame leads to bias because excluded elements tend to reflect a subpopulation or characteristics that set them apart from those covered or included in the sampling frame. Coverage errors can occur in surveys of finite populations with lists containing contact information (e.g., women enrolled in a senior center program on financial management, residents of a skilled nursing facility, etc.) as well as studies for which there is no exhaustive list or sampling frame. A surveysampling frame should be the most complete and up-to-date resource as possible. Systematic omissions will result in coverage bias.

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Frequently, area probability and some telephone random digit dial surveys exclude institutionalized members of a population, thus excluding members of the target population. For example, area probability surveys of elderly respondents in a community based on household-only personal interviews exclude respondents who reside in nursing homes or skilled nursing facilities at the time of the survey. As of 2011, 1.3 million people lived in nursing homes or skilled nursing facilities [6]. Relatively small number (1.5 million) and percentage (4.1%) of the 65+ populations in 2009 lived in institutional settings such as nursing homes (1.3 million). However, the percentage increases dramatically with age, ranging (in 2009) from 1.1% for persons 65-74 years to 3.5% for persons 75-84 years and 13.2% for persons 85+. In addition, approximately 2.4% of the elderly lived in senior housing with at least one supportive service available to their residents [7]. Careful consideration and discussion of the implications of the exclusion of persons residing in nursing homes and skilled nursing facilities should accompany any research involving mature populations. In addition to residing in an institutional setting, coverage errors occur when surveys cannot be completed with people who are not home at the time of attempted survey contact because they are in the hospital or on vacation. Elderly respondents are more likely to be hospitalized than non-elderly respondents. In 2008, 18% of adults 65 and older were hospitalized at least once in the previous twelve months compared to only 8.4% of adults between the ages of 45-64 [8]. Those over 65 were also twice as likely to spend more than three nights in hospital than those ages 45-64. Those over 65 are less likely to be in the labor force and more likely to have the freedom to travel during all times of the year, not only during the usual high vacation seasons. In the past decade, the nature of telephone surveys has changed dramatically. Historically, telephone surveys were conducted using landline telephones and covered all but about 2% of households. As of 2014, 44.1% of the population had wireless or cellular phones only, including 17.1% of adults 65 and older [9]. Thus, to ensure the most complete coverage of the population, telephone surveys must include cellular phone-only respondents. While generally more expensive to field than single frame landline random digit dial surveys, dual frame cell/landline sample surveys are less likely to suffer bias on estimates associated with

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telephone service access. Due to substantially lower costs and other conveniences, there has been a substantial increase in the number of surveys conducted online. The advantage of lower cost and greater convenience for the researchers must be weighed against the strong likelihood that a large portion of the target population of mature adults will be excluded. While in the last decade internet usage by older adults has increased significantly, it still lags the usage by younger adults. In 2013, 59% of adults age 65 and older were online, compared with 86% of adults under 65 [10]. Those older adults using the internet may be systematically different than those not using the internet in ways that may be related to the phenomenon under investigation, resulting in biased estimates. Coverage errors can be reduced through identifying the best sampling frames available, assessing them for accuracy, and if necessary, augmenting those frames with additional information from other sources. When necessary, using multiple frames, de-duplicating to the extent feasible, and statistically adjusting estimates to take into account unequal probabilities of selection. Measurement Error Measurement error is error or bias that occurs when items in the survey instrument do not measure what they were intended to measure. Flaws in the survey instrument, question wording, question order, interviewer error, timing, and question response options are the most common measurement errors. These types of measurement errors affect response quality. For surveys of elderly respondents these errors can be related to physical challenges and cognitive impairments that are often associated with aging [11]. People over 65 often have a little trouble hearing (27.8%) or have a great deal of trouble hearing, including deafness (11.1%). Overall, women are slightly less likely than men to experience hearing loss [12]. High frequency words (those beginning with s, z, t, f, and g) are often difficult for people with hearing loss and questions should be worded to avoid these high frequency words. Ciemnecki and CyBulski [13] provide this example for modifying questions with high frequency words:

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High Frequency Version: How satisfied are you with the overall quality of care you receive as a member of NAME OF MANAGED CARE PLAN? Are you very satisfied, somewhat satisfied, neither satisfied nor dissatisfied, somewhat dissatisfied, or very dissatisfied? High Frequency Version: How would you rate the overall quality of the medical care you get as a member of NAME OF MANAGED CARE PLAN? Is it excellent, very good, good, fair, or poor? This example illustrates that while question modifications may alter the meaning of a question—satisfaction with quality is different than rating the quality of an entity—the low frequency version is more likely to be understood by those respondents who have trouble hearing high frequency words. If respondents cannot hear questions accurately, it is not evident that the responses given correspond to what the researchers intended to explore. While many vision problems can be corrected, using survey design principles that maximize question clarity and flow throughout the instrument can minimize confusion. This need goes well beyond using reader-friendly font type and size and minimizes burden placed on the respondent in completing the survey. Dillman [14] provides numerous suggestions regarding the design, formatting and question wording of mail and other self-administered surveys that can reduce measurement error or item non-response. For example, Dillman rejects the use of unconventional formats such as surveys printed in landscape (horizontal) rather than portrait (vertical) or using unusual folds (i.e., an accordion) or shapes (i.e., hearts, diamonds or squares) because respondents must figure out how to physically handle the material in addition to responding to the content. Using survey design principles that minimize respondent confusion and reduce the cognitive burden on respondents by making fewer cognitive demands on respondents can facilitate more accurate survey responses by freeing respondents to devote effort to the task of information retrieval and reporting rather than to figuring out the meaning of a question. Good survey design and question construction also can help to minimize

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measurement error. Questions should be clear, easily understood by targeted respondents and allow respondents to report so that the response is mutually exclusive and exhaustive. However, there are circumstances when it is necessary to compare results from a general population survey with a survey of elderly respondents, some of whom may have cognitive impairments or other processing challenges. Standardized questions may need to be followed by structured probes to facilitate comprehension. The following example is based on a question from the 2008 National Health Interview Survey [8]: Because of a physical, mental, or emotional problem, do you need the help of other persons with PERSONAL CARE NEEDS, such as… Eating? PROBE: Preparing or cooking meals, feeding, Bathing Probe: Getting in and out of a bathtub or shower, washing, toweling Dressing Probe: Putting on and taking off clothing, shoes, coats, and hats Getting around inside this home? Probe: moving from one room to another, getting to the bathroom These probes do not change the meaning of the question, nor the response categories, but do provide respondents with concrete examples that may assist respondents in retrieving accurate information. One of the most common approaches researchers can use to reduce measurement error is pre-testing survey questions with a small sample of respondents drawn from the population participating in the survey. This “dress rehearsal” can reveal problems with questions respondents cannot answer (e.g., high proportion of “don’t know” responses or item non-response) or have visible difficulty answering (e.g., requests for clarification or modification). While useful, dress rehearsals often fail to uncover problems with a question that respondents do not mention or resolve (correctly or incorrectly) on their own and do not produce a notable glitch in the flow of responses.

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There are also a number of pre-testing techniques that can be incorporated to assess survey item performance [15]. One approach, “cognitive testing” of survey questions focuses on the thoughts respondents have as they answer questions as they answer or immediately following a question. In a retrospective cognitive interview approach to pretesting a question the respondents would be reminded of the response given and then followed by questions such as “When you were asked that question, exactly what do you think it meant?” and “Think about how you arrived at the answer to that question. Think it out for me…aloud.” Probes following verbal descriptions of these thought processes might reveal whether the intended meaning of the concepts to be measured are shared by respondents and researchers. Another approach is respondent debriefing which asks respondents to describe in their own words what the question is asking, if there are any words or phrases that are unclear, how they answered the question. For example, the question from the American Housing Survey “Does the government limit the rent on this unit through rent control or rent stabilization?” might be followed with probes on what the respondent thinks “rent control” or “rent stabilization” are. Responses to these questions will reveal the extent to which the meaning of specific words within a question and the question in total is shared by respondents and researchers. The goal of these pretesting approaches is to catch problems with survey questions prior to going into the field. Two other techniques, behavior coding and analysis of missing data, are used to assess questionnaire performance. Behavior coding involves tracking interviewer/respondent behavior to track questions for which there are long pauses, requests for clarification, indications that the questions are not applicable. For self-administered questionnaires examining skip patterns and items with missing data can reveal measurement problems. Improper skips can indicate misunderstanding of the previous question or misunderstanding of a skip series. Both problems can lead to asking respondents questions that are inappropriate to their circumstances. Missing data in these instances are not missing at random, and thus can bias measurement. Nonresponse Error Nonresponse error occurs when people who would be eligible to take the survey

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are not interviewed. The inability to interview people who are eligible for a survey can be due to survey design decisions and their interaction with respondent characteristics. Nonresponse bias is the difference in responses of those people who complete the survey vs. those who refuse or cannot complete the survey for any reason. It is different than coverage error. While the error itself cannot be fully calculated, response rates can be calculated and there are countless ways to do so. The American Association for Public Opinion Research (AAPOR web site) provides recommended procedures for calculating response rates along with helpful tools and related definitions to assist interested researchers. Almost all surveys conducted have less than perfect response rates, and basic non-response analysis can provide some indication of how nonresponse bias may be effecting estimates. Most commonly used techniques for non-response analysis include comparing surveys to external data, studying internal variation within the data collection process, and contrasting alternative post-survey adjusted estimates. Cognitive impairments and mental or emotional health problems can affect survey participation and responses as well. Women are more likely to experience severe cognitive impairment as men as they age, with about 10% of women between 8084 years of age and 5% of their male peers experiencing some cognitive impairment [16]. Just over twenty percent of women over 85 experience severe cognitive impairment. Moderate or minor cognitive impairment also may affect the accuracy of survey responses. The question of whether and how to include persons with cognitive impairment or mental health problems that may affect their participation in social surveys must be addressed both with respect to data quality, the principles of self-care and management as promulgated under the 1990 Americans with Disabilities Act, and with institutional review board policies and procedures guiding the inclusion of cognitively or decisionally impaired people. While the 1990 ADA promotes maximizing full inclusion of people with disabilities, the guidance of some institutional review boards makes clear that inclusion of participants with cognitive or decisional impairments in research should be restricted to research that is: “…relevant to the subject’s condition or circumstances. There must be a compelling justification for including the decisionally or cognitively

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impaired as subjects. Decisionally or cognitively impaired individuals must not be subjects only because they were available [17].

Clearly, these conflicting perspectives of the 1990 ADA and an institutional review board’s standard to include those with decisionally or cognitively impaired when the research is relevant to the conditions or circumstance need to be reconciled such that respondents’ rights are maximized and burdens are minimized while balancing data quality and generalizability. Techniques for assessing cognitive impairment have been successfully used in survey settings and can assist researchers in making decisions regarding the potential for measurement error that may result from cognitive impairment of respondents. Under some circumstances, the use of proxy reports may be necessary if it is reasonable to assume that respondents cannot provide reliable reports on the variables of interest due to cognitive limitations. In many instances only some of the items on a survey may need to be answered by a proxy reporter. For example, a relatively independent respondent with some cognitive impairment may have her financial matters attended to by her children but is personally responsible for decisions regarding her living arrangements and health. In that situation facilitating proxy reporting on any financial questions may improve overall data quality without compromising data quality on those areas outside the realm of finance. Whenever possible, the decision to suggest a proxy for part or all of an interview should be made by the targeted respondent. SUMMARY That many women living in the United States are living longer lives, often independently, provides researchers interested in understanding the dynamics of aging or the impact of programs ample opportunities for investigation and documentation. Like all attempts to accurately describe a population, solid survey research on mature women begins with sound principles of survey design. Using a total survey error perspective when designing a survey provides researchers with a balanced framework through which to view the survey process from conceptualization to analysis. By considering sampling error, coverage error, measurement error and nonresponse error in designing and executing a survey,

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researchers can prioritize and allocate additional resources where risks for bias are greatest. When necessary well-reasoned, research-based modifications and adaptions to good survey design can facilitate understanding, boost response, and ensure population coverage. Minor modifications such as using multiple frames to address coverage gaps, pre-testing with a carefully selected sample of the target population, judicious use of proxy reporters, and nonresponse analysis can improve data quality and result in a more accurate picture of mature women. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

Groves R. Survey errors and survey costs. NY: Wiley 1989. [http://dx.doi.org/10.1002/0471725277]

[2]

Hultsch DF, MacDonald SW, Hunter MA, Maitland SB, Dixon RA. Sampling and generalizability in developmental research: Comparison of random and convenience samples of older adults. Int J Behav Dev 2002; 26: 345-59. [http://dx.doi.org/10.1080/01650250143000247]

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Pruchno RA, Brill JE, Shands Y, et al. Convenience samples and caregiving research: how generalizable are the findings? Gerontologist 2008; 48(6): 820-7. [http://dx.doi.org/10.1093/geront/48.6.820] [PMID: 19139255]

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Heckathorn DD. Respondent-Driven Sampling: A New Approach to the Study of Hidden Populations. Soc Probl 1997. [http://dx.doi.org/10.2307/3096941]

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Salganik Matthew J, Heckathorn Douglas D. Sampling and Estimation in Hidden Populations Using Respondent-Driven Sampling. Sociol Methodol 2004. [http://dx.doi.org/10.1111/j.0081-1750.2004.00152.x]

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National Center for Health Statistics. Table 120 Nursing homes, beds, residents, and occupancy rates by state: United States. United States: Hyattsville, MD 2011.

[7]

Administraion on Aging. U.S.Department of Health and Human Services, A Profile of Older Americans. Available from: http://www.aoa.gov/Aging_Statistics/Profile/2011/docs/2011profile.pdf. 2011.

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[8]

Centers for Disease Control. National Health Interview Survey 2011. Available from: ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/Survey_Questionnaires/NHIS/2010/English/

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Blumberg SJ, Luke JV. Wireless substitution: Early release of estimates from the National Health Interview Survey, January-June 2014. National Center for Health Statistics 2015. Available from: http://www.cdc.gov/nchs/nhis.htm.

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Pew Research Center. Older Adults and Technology Use 2014. http://www.pewinternet.org/2014/04/03/older-adults -and-technology-use/

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Colsher PL, Wallace RB. Data quality and age: Health and pyschobehavioral correlates of item nonresponse and inconsistent responses. J Gerontol 1989; 44: 45-P52. [http://dx.doi.org/10.1093/geronj/44.2.P45] [PMID: 2681362]

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Charlotte S, Kathleen H. Health Disparities Among Adults With Hearing Loss: United States, 20002006. 2008. Available from: www.cdc.gov/nchs/data/hestat/hearing00-06/hearing00-06.pdf

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Ciemnecki A. K CyBulski. Removing the barriers: Modifying telephone survey methods to increase response rates among people with disabilities. In: Kroll T, Keer D, Placek P, Cyril J, Hendershot G, Eds. Towards best practices for surveying people with disabilities. NY, NY: Nova Science Publishers 2007; Vol. 1.

[14]

Dillman DA. Mail and internet surveys: The tailored design method. NY, NY: John Wiley & Sons, Inc 2000.

[15]

Presser S, Couper Mick P, Lessler JT, Martin E, Martin J, Rothgeb JM. Singer Eleanor.”Methods for Testing and Evaluating Survey Questions. Public Opin Q 2004; 68(1): 109-30. [http://dx.doi.org/10.1093/poq/nfh008]

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National Institutes of Health/Institute on Aging. Growing older in America: the Health and Retirement Survey 2011. Available from: http://www.nia.nih.gov/sites/default/files/health_and_ retirement_study.pdf

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Office for the Protection of Research Subjects Institutional Review Board, University of IllinoisChicago. Approval Criteria: Decisionally Impaired and Cognitively Impaired Subjects, Version 11, page 3 2008. Available from: http://tigger.uic.edu/depts/ovcr/research/protocolreview/irb/ policies/0854.pdf

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CHAPTER 10

The Need for Connection: The Role of Groups in the Lives of Older Women Shirley R. Simon* and Marcia Spira School of Social Work, Loyola University Chicago, Chicago, USA Abstract: Group connections are powerful tools to help older women to sustain a sense of well-being and health. The healing qualities of groups have the potential to mitigate issues of social isolation and loneliness. Women find support, camaraderie and hope through group membership. This chapter describes common challenges faced by older women and explains the healing quality of belonging to diverse types of groups.

Keywords: Connections, Groups, Older women, Relationships. INTRODUCTION The following case example identifies and highlights common challenges experienced by older women in today’s society. Jane Harris is a 75 year old woman who states that she generally enjoys good physical and cognitive health. Her main concern is that she experiences periods of sadness, lethargy and fatigue that she believes come from loneliness. Ms. Harris was widowed five years ago. She spent the last five years of her husband’s life caring for him through his battle with lung cancer. She has three children who live out of state, two of whom are married, one of whom has two children. Ms. Harris speaks with great pride about her grandchildren but is disappointed that she does not see them very frequently. Ms. Harris was married for 42 years and describes her “total dedication” to her Corresponding author Shirley R. Simon: School of Social Work, Loyola University Chicago, 820 North Michigan Avenue, Chicago, IL, 60660, United States; Tel: 312-915-7310; Fax: 312-915-7645; Email: [email protected].

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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husband and children during that time. She finished a teaching program in a local college, but never worked because she thought it would take too much time from her family.. She describes herself as not religiously observant but grounded in a spiritual belief in “a higher power.” She is financially stretched, but determined to keep “food on the table and a roof over my head.” She lives in the house that she and her husband built, and has contemplated a future decision to obtain a reverse mortgage to make ends meet. She relies on income of about $28,000 a year from a combination of Social Security benefits and a small investment fund. She worries that if she has health needs her money won’t last. Now alone, Ms. Harris feels isolated and “out of touch” with the rest of the world. Ms. Harris is typical of many women over the age of 65. Her life had once been organized around the care of her family, but now at a stage of life during which she still has health and the capacity to care for herself independently, she feels alone and disconnected from the world. The problem for Ms. Harris, and for other older women, is substantiated by statistics. In 2011, the Administration on Aging reported that older women outnumbered older men, 23 million to 17.5 million [1]. Also, the same report from the Administration on Aging reports that almost half of women over the age of 75 lived alone, with 40 percent of that group being widowed. Like Jane Harris, many older women live alone in our society and face significant physical, economic, social and psychological challenges. Although a report by the National Center for Health Statistics [2] demonstrates that 44 percent of non-institutionalized older persons, defined as over 65 years old, assess their health as excellent or very good, most older persons have one or more chronic conditions. However, since women live longer, they are likely to experience the challenges associated with chronic illness and potential disability for an extended period of time. This is exacerbated by the natural decline of biological systemic factors inherent in the aging process [1, 2]. Older women also face financial challenges and are likely to be poor. Older women had a higher poverty rate (10.7%) than older men (6.2%) in 2011 [1]. The overall rate of poverty increases with age [1], with 70 percent of all older women having fallen below the poverty line. Older women who live alone are even more likely to live in poverty. This is especially true among older women of color who

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live alone, with the highest rate of poverty (38.8%) among Hispanic women and the next highest rate of poverty (32.2%) among African American women [1]. Often, poverty occurs after, not before, the death of a spouse. The median income of older persons in 2011 was $27,707 for males and $15,362 for females. The main source of income for women is Social Security, and the disparities in earned income result in lower benefits for women than for men. Women often have more sporadic work histories, with absences taken for family responsibilities and caregiving, denying them the opportunity to receive pension income [3]. SOCIAL RELATIONSHIPS Social relationships have been clearly recognized as instrumental in the ongoing health and well-being of older people [4]. Transitions in the social lives of older women can be particularly challenging. In her groundbreaking work, In a Different Voice [5], Carol Gilligan discusses how life transitions impact women’s experiences in distinct ways. Women are likely to organize their social identities around an “ethic of care,” which Gilligan defines as relationships based upon mutual concern and support. Since almost half of women (46%) over the age of 75 live alone [6], many lack sufficient opportunities for meaningful social connections. The accessibility of earlier connections via employment, education, and community activities are likely to be diminished. Important connections with children and extended family may be challenged by mobility and geography as adult children move on with their own progression through the life cycle. Also, women who live alone are often hesitant or unwelcome to participate in social activities with people who are partnered. They may feel abandoned by friends [7]. The absence of these previously experienced daily opportunities for social relationships may therefore diminish older women’s perceptions of well-being and sense of self. Despite the recognition of the continued significance of connection in their older years, women are often reluctant to acknowledge their relational needs. In fact, older women tend to view dependency as a sign of deficit or weakness [8]. However, as life progresses and the relationships by which women have defined themselves are lost, new means of connection must become available.

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Groups are a powerful modality through which women may develop relationships that meet their needs for connection. The very definition of a small group “implies the ability of members to identify themselves as members, to engage in interaction, and to exchange thoughts and feelings among themselves through verbal, nonverbal, and written communication processes” [9]. Identification, interaction, and communication exchanges are hallmarks of the group process, no matter the type and purpose of the group experience. As Robert Putnam states in his seminal book, Bowling Alone, people who are not well-connected with others are more likely to die, regardless of the cause of death [10]. More pointedly, Putnam asserts, “As a rough rule of thumb, if you belong to no groups but decide to join one, you cut your risk of dying over the next year in half. If you smoke and belong to no groups, it's a toss-up statistically whether you should stop smoking or start joining” (p.331) [10]. So, what is it about groups that makes membership such a powerful factor in one's health? Irvin Yalom, the highly regarded group psychotherapist, has identified a frequently cited list of the therapeutic factors implicit in effective groups [11]. Among these factors are: a) universality; b) instillation of hope; c)imparting information; d) development of socializing techniques; e) imitative behavior; f) catharsis; g) altruism; h) existential factors; and i) cohesion. Each of these factors can be beneficial to women like Jane Harris. Universality is the awareness that others share similar situations and feelings, and that one is not alone or painfully unique in these circumstances. The group experience allows for an understanding and appreciation of this mutuality, and mitigates against the sense of difference and isolation. The process of being with and like others is in itself healing. For Jane Harris, participating in groups with other widows could allow for normalization of her life situation and provide camaraderie in her current stage of life. Instillation of hope is another critical factor for many group participants. Many older women, no longer able to depend upon familial and work relationships for psychological and social support, feel a sense of loss that can lead to depression and/or diminished well-being. Participation in groups allows for the reestablishment of connection and relationships. Moreover, members can perceive,

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at close hand, how others are adjusting to significant life changes. By witnessing and identifying with others who share similar life circumstances, participants can gain a sense of hope and optimism in their own ability to move forward in their lives. The belief that one can cope with current circumstances, and even enjoy new endeavors and experiences, is a powerful motivator. Imparting information, another of Yalom’s therapeutic group factors, refers to two types of information - didactic and direct. Group participants frequently gain concrete, practical information to enhance their functioning. For instance, when Jane Harris joins an exercise group to improve her arthritis, she receives didactic information, usually from the group leader, about the biological and chemical role of movement in coping with and potentially improving her pain. She also receives direct information, typically from other group members, in the form of suggestions and practical advice for dealing with her condition. Recommendations about good books on arthritis, doctors to consult, and helpful tips need to be weighed carefully when given by non-professionals. Nevertheless, information from others' first hand experiences can be invaluable. The same exercise group can provide Jane Harris with opportunities for the development of socializing techniques and imitative behavior. Ms. Harris, a naturally quiet and shy individual, can be drawn out by the others in the group. She might be invited to lunch after class and encouraged to join the group for walks on non-class days. Gradually, Jane may start to open up and share in the social conversation as the members make their way around the track. If a few of the members are devoted walkers, she may begin to get up early on weekend mornings to walk with them. By imitating and adopting others' healthy behaviors, Jane may gradually feel more energized and connected. Participating in groups can allow Jane Harris the opportunity for catharsis or the ventilation of feelings. Whether it is a widows' support group, an exercise group, or a scrapbooking group, members can share and discuss their feelings about a variety of topics and experiences. The process of opening up and allowing emotions to be shared and heard can be a potentially healing experience. Groups that provide an environment of trust and support enable members to more freely share their emotions.

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Healing frequently takes place when group members openly express their feelings to one another. Inherent in this process is the therapeutic factor Yalom describes as altruism. Altruism, the process of giving without expecting anything in return, supports Gilligan’s “ethic of care,” described earlier. Despite the lack of expectation of personal benefit, group members may indirectly enhance their selfworth through altruistic interactions. The group member who offers time, feedback, or an empathic presence when Jane expresses concerns about being a burden to her children, does so to support Jane’s needs. While the altruistic group member is doing something for Jane, she is also enhancing her own sense of selfworth. She is demonstrating to herself and others that she has something valuable to contribute, and that her presence makes a difference. The recognition that a woman has made a difference in the lives of others may be a critical concern in her later years. Resolution of the crisis of meaning that can occur in later life is critical in the stage labeled by Erikson as integrity vs. despair [12 - 14]. Satisfaction with the life that has been lived is balanced against the potential for despair and incompleteness. Groups can serve as a powerful medium to resolve the existential questions that arise in this search for meaning [11]. Existential factors are a therapeutic component of groups that can be particularly significant for older women. In this context, existential factors refer to the opportunity to discuss life's truisms with others in a safe, supportive environment. For Jane, this could mean sharing her perception that life is unfair. Jane may question why her kind, health- conscious husband who exercised, maintained his weight, and ate nutritiously, died while her friend’s obese, obnoxious spouse remains vital. Within a group, Jane and others are able to address their own mortality and the fact that life is finite. This is not a topic we comfortably acknowledge in our normal day-to-day interactions, and yet, understandably, it is a topic that engenders considerable feelings and concerns among older women. Having a group in which such topics can be raised without judgment and dismissal can be a vital therapeutic outlet for these women. Finally, as Yalom asserts, the most important therapeutic factor of group interaction is cohesion. The strength of the connection among the members is a critical factor in determining the impact and effectiveness of the group. The greater the cohesion, the more likely the members' goals will be achieved. Groups

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that have a strong sense of “we-ness” can significantly impact their members. For Jane and other older women, it is essential to find and participate in groups where, regardless of group purpose or type, the participants feel a sense of belonging. It is this connection and social engagement that mitigates the stresses older women face, motivating and empowering them to go forward in relationship with others [15]. FACILITATING XONNECTIONS THROUGH GROUPS: EXAMPLES OF COMMON CONTEMPORARY GROUPS FOR OLDER WOMEN A wide variety of groups with vastly different goals and purposes offer the opportunity for older women to develop these types of meaningful relationships. Some groups serve socio-emotional needs, while other groups are more taskoriented [9]. Despite these differences, groups provide overlapping therapeutic benefits. Four of the more common types of groups frequently attended by older women are caregiving support groups, bereavement groups, activity based groups and spirituality groups. CAREGIVING GROUPS Like Ms. Harris, most caregivers are female. Older women are far more likely to be informal caregivers for parents or spouses [16]. The plight of the long-term caregiver has been described as stressful and burdensome, with caregivers prone to higher levels of depression, illness, and financial and emotional burdens [17]. Caretaking responsibilities can severely limit outside social contacts, interfere with employment and recreational activities, and lead to feelings of loneliness [18]. Group connections may be an effective modality for caregivers to alleviate some of these consequences of caregiving. Gonyea, O’Connor, and Boyle [19] found that a group intervention for predominantly female caregivers of patients with Alzheimer’s disease was effective in learning how to cope with the stresses of caregiving. In fact, Toseland, Rossiter, Peak, & Smith [20] found that those who attended a peer-led support group had a significant increase in social network size, thereby reducing social isolation. Members of caregiving groups have found benefit from specific types of interventions such as psychoeducation, support, and information about practical

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solutions to the daily problems of caregiving [21]. Psychoeducation can provide information about the disease process, the trajectory of the illness, coping strategies, and potential interventions [22]. Group support for feelings evoked in the caregiver over the course of the illness can provide members with hope, universalization, and cohesion. In addition, Haley, Brown & Levine [23] found that caregivers valued the education and support they gained from group participation. The most important factors seemed to be the identification with other group members, the experience of universality, and a sense of belonging, providing the often emotionally depleted caregivers a source of strength. BEREAVEMENT GROUPS The death of Jane Harris’s husband was a life- transforming event. Her sense of identity, purpose, and role was instantly altered. The consequences of such a significant loss have been well documented and include loneliness, social withdrawal, depressed mood, poor health, and disengagement from social networks [24]. The death of a spouse in later life is associated with declines in social, physical and mental health [25]. Bereavement groups are a very popular psychosocial intervention due to their accessibility and low cost [26]. After the initial stage of coping with loss, Jane continued to feel isolated, alone and in need of finding new ways to develop connections with others. Groups for bereaved individuals serve as an effective method of alleviating isolation and loneliness among older adults who have endured the loss of a loved one [27]. Haley, Bergman, Roth, McVie, Gaugler and Mittleman [28] found sustained decreases in depression and loneliness 12 months following a short-term group intervention. Individual growth within bereavement groups is facilitated by a number of therapeutic factors consistent with those described by Yalom & Leszcz [11]. These factors include universality, imparting information, catharsis, instillation of hope and group cohesion. The group environment encourages open sharing of grief-related feelings, the learning of new coping strategies from other members, and recognition of the commonality of grief experiences among the participants. Bereavement support groups strengthen informal support networks and engender

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a sense of belonging among the participants [29, 30]. ACTIVITY BASED GROUPS Groups whose purposes are largely social, educational, and/or recreational can have a significant therapeutic impact on their members. Activity based groups offer the opportunity for social enhancement and connection beyond the stated objectives of the specific group [31]. While such groups focus on a task or skill, the process of sharing the experience with others can be highly therapeutic. The activity provides a structure around which women who might otherwise be alone are able to connect and form social relationships. For individuals like Jane Harris, who feel isolated, it may be less daunting to join groups based on personal interests. Members of bridge clubs, current events discussion groups, or walking clubs engage with others over a particular interest. Participants develop identities as members of the group and, as such, can derive recognition, support, validation, and connection. A member's absence can be noted by a phone call indicating that one has been missed, and thus conveying the implication that one's presence has meaning. A bridge hand well-played or a current event insightfully discussed can lead to affirmations that enhance one's self-esteem and sense of self. The “esprit de corps” of a cohesive team or recreational group can foster a critical sense of belonging. In addition, regular participation in activity based groups provides purpose to participants' days and options for the continuity of meaningful activity in their lives. As Rowe and Kahn [4] found in their study on successful aging, meaningful social engagement in life through activity is essential for well-being. Beyond the activity focus of these groups, women benefit from the meaningful connections they form. SPIRITUALLY BASED GROUPS Spirituality can be particularly important in the lives of older women [32]. Since women are likely to live longer, and often live alone, the comfort of spiritual reflection and the support of spiritually-based groups may take on greater significance. For Jane Harris, like other women in her circumstances, the sharing of spiritual and religious beliefs with group members can serve as a source of social support, counteract social isolation, and buffer the challenges of illness and

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loss. Many researchers have supported claims that religion and spirituality have positive effects on physical and mental health and provide a framework for understanding the meaning of life [33 - 35]. Membership in spirituality groups offers older women an opportunity to reexamine perspectives on life challenges, lifestyle choices, and self-care within a safe environment [36]. The importance of faith-based organizations in many cultures also makes the context of faith based/spirituality groups an effective venue for psychoeducation, lifestyle changes, and self -care among many older caregivers. In African American communities, for example, the church continues to be a major source of social support and community connection [37]. Therefore, the church may hold a great deal of influence in groups that teach women the importance of health choices and lifestyle changes. Gilligan [5] articulates the concept of “relational spirituality,” which describes the essential dynamic of women recognizing their own spiritualty in the context of others. Groups offer older women the mutually enhancing opportunity to reflect on their own spiritual beliefs and simultaneously gain the perspectives of other group members. FUTURE CONSIDERATIONS: THE IMPACT OF TECHNOLOGY Technological advances in communication will likely have an increasing impact on future generations of older women. As Czaja and Schulz [38] have observed, there is an “age-based digital divide” [38], (p.6) within the U.S. population. According to the Pew Research Center's Internet and American Life Project [39], only about 57 percent of those 65 and older use the Internet, versus 88 percent of 50 - 64 year olds, 93 percent of 30 - 49 year olds, and 97 percent of those 18 – 29 year olds. Moreover, older individuals who utilize the Internet are likely to be white, highly educated, and more affluent, pointing to a potential racial, educational, and economic divide [39]. The current cohort of women over the age of 65 grew up with snail mail, landline telephones with operator assistance, and television. While many of the “younger” women within this cohort have adapted to computers, Internet, smart phones, texting and social media connections, the oldest-old have been less likely to

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embrace these newer forms of communication. Some may send emails, use Skype to connect with grandchildren, and even have Facebook accounts, but this is not yet the norm [40]. Online social networking was once almost exclusively used by college students and young adults, but today more than half of social networking site users are over 35, with a majority of users identifying as female [41]. However, only 46 percent of online adults 65 and older report using social networking sites [40]. While this represents a dramatic increase from the one percent of older adults using social media in 2006, Internet users over 65 still lag behind the 73 percent of all Internet users frequenting sites such as Facebook, LinkedIn, MySpace, and Twitter [40, 41]. Future generations of older women will have grown up with these social media and networking connections and be more comfortable with virtual group interactions. There is likely to be a proliferation of online groups that serve the psychoeducation, support and socialization needs of older women. The trend to enhance or even replace many face-to-face interactions with virtual connections is expected to continue [42]. This will have an impact on the nature, immediacy, and frequency of social connections. Social media and networking sites may prove especially beneficial to future generations of women like Jane Harris, as Facebook users have been shown to have more close relationships and greater social support than those not using social networks [41]. The potential for large-scale, easily accessed, inexpensive connections is undeniable. It will be interesting to see how the quickly developing advances in technological communications impact older women and their need for connection. CONCLUSION Older women require connection for healthy aging and a continued sense of wellbeing. Groups have been shown to be an effective vehicle for addressing this vital need. As women age, many lose sources of social and emotional support. Groups have been demonstrated to effectively mitigate against potential social isolation and loneliness. Based on a developmental model that is relationally-oriented, groups with their inherent therapeutic factors are a natural venue for women.

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Group relationships provide the potential for empowerment, self-sufficiency, and self- esteem [43]. The range and diversity of objectives, structure, and availability of groups creates options for today's older women to engage with others and sustain connectedness and purpose. It is anticipated that future generations of older women will be increasingly educated and comfortable with the use of technology as a venue to create group connections through social media and online formats. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication. ACKNOWLEDGEMENTS The authors would like to acknowledge the valuable assistance of Sarah Burnette Hemphill, Moshe Brownstein, and Mary-Margaret Sweeney in the preparation of this chapter. REFERENCES [1]

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CHAPTER 11

Well-Being and Health Considerations for the Aging Lesbian Community: Understanding Age Cohorts, Partnerships, Caregiving and Other Unique Needs Michael P. Dentatoa,*, Shelley L. Craigb and Lauren B. McInroyb a

School of Social Work, Loyola University Chicago, Chicago, USA

b

Factor~Inwentash, Faculty of Social Work, University of Toronto, Canada Abstract: Effectively exploring the well-being, health and mental health needs of the aging lesbian community can often be difficult and multi-leveled, while insuring a competent and comprehensive assessment of needs. A limited amount of research has specifically attended to the lives and unique experiences of aging lesbians, along with those of the larger LGBT community, therefore such matters remain poorly understood. Regardless, insuring any dialogue surrounding the needs of older lesbians must underscore their resilience - which for many has included becoming actively engaged as advocates for visibility and change - especially during the late 1960s and Stonewall Inn revolution, as well as the early 1980s and beginning of the HIV/AIDS epidemic despite ongoing discrimination and prejudice. This chapter examines some of the background statistics on the older lesbian population, exploring lifespan and developmental topics including: coming out; relationships and marriage; parenting; and age cohort differences along with caregiving, death and dying, and risk/protective factors related to sex and sexuality. The chapter concludes with implications for social workers, counselors, and others health practitioners, focusing on affirming approaches and models of practice.

Keywords: Aging, Caregivers, Lesbians, LGBT community. Corresponding author Michael P. Dentato: School of Social Work, Loyola University Chicago, Chicago, IL 60660,60611, United States; Tel: 312-915-7030; Email: [email protected]

*

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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INTRODUCTION Members of the widely diverse lesbian, gay, bisexual, transgender and queer (LGBTQ) community have unique needs when experiencing the aging process, needs which impact their long-term well-being, health and mental health when compared to other aging minority populations. Unfortunately, research has not adequately examined the social support and health requirements of older LGBTQ people (defined as those over the age of 65) and necessities specific to the population have largely “gone unidentified and unmet” [1] within research and social service contexts. Much of the research on LGBTQ older adults has typically examined varied samples of lesbian, gay and bisexual survey participants, commonly focusing on gay men in particular. Minimal research has specifically attended to the lives, concerns and unique experiences of older lesbians, a community that remains poorly understood at best [2]. Sample sizes of studies have also typically not been large, and have lacked specific attention to the impact and intersection of relevant socio-demographic factors, including: race/ethnicity, cultural diversity, urban/rural location, socioeconomic status and level of education [2, 3]. While much of the discourse surrounding the LGBTQ community focuses on risk factors, it should be underscored that this diverse community is notable for its resilience – which for many has included becoming actively engaged as advocates for visibility and change despite ongoing discrimination and prejudice [4]. Exploring and properly addressing the aging, health and wellness needs of all older LGBTQ adult sub-populations is critical to clarify the meaning of diversity within each sub-populations’ lived experiences, and to more fully comprehend and understand the cumulative risks facing this aging community [5]. The aging process for lesbians specifically may differ from other members of the LGBTQ community in unique ways, necessitating specific attention. Despite recent advances in policy, advocacy and visibility for the LGBTQ community, lesbians continue to be stigmatized within society – perhaps suggesting why they do not typically participate in research efforts examining their lives [6]. The lives of all older LGBTQ adults have likely been impacted by some form of stigma or oppression [7]. While the impact of perceived or actualized stigma experienced by members of the LGBTQ community often facilitates opportunities for shared

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understanding, important differences remain between LGBTQ sub-populations. The stigmatization experienced by these sub-groups is complex and contextual, affecting their health and well-being in unique ways [4]. One example may pertain to age cohort, as younger LGBTQ generations have embraced a more notable visibility while celebrating a LGBTQ sensibility and identity [8]. This celebration is in direct opposition to the projected, and often shared, sense of shame that many older members of the LGBTQ community have felt for decades – especially those among pre-Stonewall cohorts – as a result of being outsiders or having kept one’s sexual identity a secret to avoid social stigma, bias and/or oppression [9]. Notably, while the term queer is increasingly popular among younger age cohorts [10, 11]; it may evoke a mostly pejorative meaning for many older members of the LGBTQ community [12]. A more nuanced, targeted discourse may be particularly helpful in discussions surrounding health promotion and service provision. While the health and mental health needs of bisexual women and queer women, as well as members of the widely diverse transgender community, are similarly important to consider, the particular needs of women identifying as lesbians still requires further elucidation. For such reasons, this chapter will focus specifically on the well-being, health and aging issues faced by older lesbians in the face of significant ongoing social stigma and oppression. Additionally, please note that the content presented in this chapter is not generalizable to all lesbians, nor indicative of all older lesbian experiences. This chapter begins with some background statistics on the older LGBTQ population with a focus on lesbians, and then explores specific lifespan and developmental topics including: the coming out process; relationships, partnerships, and marriage; parenting; and age cohort differences (specifically comparing the pre-Stonewall and the post-Stonewall generations). To underscore the unique health and mental health needs of older lesbians, topics such as caregiving, death and dying will also be examined, as well as risk and protective factors related to sex and sexuality. We have specifically chosen to use the term lesbian for consistency throughout the chapter, yet this discussion is intended to be representative of aging and older lesbian, gay and other same-sex attracted women. Terminology has unique historical context, and using terms such as gay,

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or not labeling one’s sexuality, may remain relevant for older cohorts of LGBTQ women [12, 13]. The chapter will conclude with implications for those in the field of social work, counseling, and health, among others, while specifically focusing on affirming approaches and models of practice, as well as underscoring the resilience and strengths of this diverse community of women. BACKGROUND Population Statistics and Socio-demographic Trends Statistics and trends regarding the older LGBTQ population are mixed, and the exact number of aging LGBTQ people in the United States is often difficult to assess due to a lack of attention to sexual orientation on large-scale, nationwide surveys [3]. The National Resource Center on LGBT Aging estimates that approximately 1.5 million adults over the age of 65 identify as LGBT [14]. Other approximations place this number at upwards of 3 million. The number of LGB adults is projected to continue to grow exponentially, with estimates indicating approximately 4 million aging LGBTQ people by 2030 [15]. One longitudinal study found the percentage of seniors age 65 and older in same-sex couples grew from 4.9% in 2005 to 6.3% in 2011 [16]. Regardless of recent progress in documenting numbers of LGBTQ adults, re-examination of societal views on aging is necessary as there remains limited statistics on the number of aging and older LGBTQ people. This limited data underscores the continued invisibility for this community in need of services and support, as members of many older and aging minority communities are routinely oppressed, stigmatized and rendered invisible [17]. Sub-groups may experience even greater invisibility within the aging LGBTQ population itself – particularly those within the aging transgender community. Members of the LGBTQ post World War Two ‘baby boom’ generation (born 1946-1964) are now reaching retirement age [17, 18], and represent members of the first ‘out’ generation of older adults in the history of the United States [19]. The Stonewall Inn revolution occurred in June of 1969 in New York City. The attempted closure of this bar, which was frequented by members of the LGBTQ community, and subsequent arrest of its patrons – part of a larger pattern of

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routine harassment – sparked protests and riots throughout the city for several days between members of the LGBTQ community and the police [1, 3]. This event is often considered a critical milestone of the modern LGBTQ movement. Members of the post-Stonewall LGBTQ age cohorts (those under age 65) have experienced a much more significant degree of social progress as compared to those within pre-Stonewall age cohorts (those age 65 and over), who typically experienced much more social discrimination over the course of their lifetimes, and for whom social change occurred much more slowly [1]. It may be relevant to consider the role of one’s age cohort, as well as societal impressions and expectations, in order to understand the complex needs of older lesbians in a more inclusive way. LIFESPAN DEVELOPMENTAL ISSUES Coming Out The process of coming out, or disclosing one’s sexual orientation as lesbian, is typically a life long journey for most members of the community. It is a multilayered experience, which moves from a period of self-realization to an ongoing, often challenging, series of disclosure processes with friends, family members, co-workers and others in multiple settings of an individual’s life, from school, to work, to assisted living facility/retirement home [20, 21] and beyond. Myriad institutional, socio-demographic and contextual factors may also impact the coming out experience, such as gender, religion and spirituality, family structure, cultural background, immigration status and health. Regardless of the assumptions that disclosure of one’s sexual orientation presents ongoing challenges, the result of someone successfully moving through the initial coming out process may contribute to a significant alleviation of anxiety and stress for members of the LGBTQ community [22]. Thus, coming out can provide a significant sense of relief and solidification of identity for many lesbians, as well as positively impact pride in one’s identity and access to the larger lesbian community as well as the broader LGBTQ community [23, 24]. Challenges faced by the older lesbian community regarding the coming out process are complex. This sub-population represents a diverse community, with

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unique coming out experiences that may be impacted by race, ethnicity and culture; including those who may have lived most of their lives closeted or in a heterosexual relationship; as well as those who may feel pressured by younger generations who are more open. Gender and heteronormatively assumed gender roles provide additional challenges for lesbians coming out, as women are assumed to play unique roles within the home, places of employment and within relationships when compared to men. Furthermore, based on self-assessment of safety in particular contexts, some lesbians may have to re-closet themselves in unwelcoming environments, ranging from their place of employment to social settings, as well as with health care providers or within retirement/assisted living facilities [18, 25, 26]. Dating & Partnerships The Institute for Personal Growth found that 52% of heterosexual women reported an attraction to women, while 75% of identified lesbians reported attractions to men and 80% of those lesbians had opposite-sex sexual experiences [27]. Over the years literature and research has frequently promoted the notion of sexual changeability among women, including suggesting that older lesbians may experience a lifetime of sexually fluid behavior [2, 27, 28]. This fluidity occurs despite strong identification with a lesbian identity, and is demonstrated in reports of former social and sexual relationships with men (including dating and marriage) across the life course and having some current attractions to men. The period of life span development may also impact dating and partnering among lesbians, as one study found that lesbians in mid-life stages may experience greater freedom from typically expected gender roles. This is distinctly different from younger lesbians, who may not possess the maturity and comfort of having identified as a lesbian for a longer period of time. Older lesbians may commit more rapidly to the dating process as well as be more likely to ask for a date and initiate physical intimacy, ultimately being more purposive in attitudes and behaviors when compared to younger cohorts [29]. Older lesbians may also reject the typically expected gender norms of their youth, when it was more typical to prescribe to either ‘butch’ or ‘femme’ roles [29]. They may now increasingly affirm various combinations of such gendered roles

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associated with masculinity and/or femininity within their relationships. Lesbians are also typically socialized in a unique and culturally specific manner in which intimacy is valued and creates strong bonds within relationships, oftentimes taking precedence over sexuality, which can create a blurring of the boundaries denoting the typical parameters of a relationship versus that of a friendship [6]. The small body of research examining dating patterns and partnership formation among members of the LGBTQ community also indicates that older lesbians are typically in same-sex relationships that are comparable in length to marriages of heterosexual counterparts. Continued research related to this topic may be necessary with recent progress related to the marriage equality movement and ongoing policy changes in the U.S., which will be further discussed in this chapter. Sex & Sexuality Any discussion examining sex and sexuality issues among older lesbians should be prefaced with an acknowledgement that all members of sexual minority communities live within a heteronormative social framework with strict expectations related to definitions of gender, gender roles, sex and sexuality [30]. LGBTQ women may define sexual and romantic experiences and relationships in significantly different ways compared to non-LGBTQ women, while oppositely they may also be described in the exact same manner. Recently, some scholarship related to older lesbians indicates a focus within the sub-population upon maintaining stable relationships, providing evidence for continuous patterns of behavior and partnerships [2], as well as indications these women may place less of an emphasis upon sexual activity. However, it should be noted that such literature and correlated findings have been based on relatively small, homogenous samples [2, 13, 31]. Aging challenges among older women, particularly following menopause, may be associated with decreased prevalence of sexual activity, yet not with decreased sexual interest or functioning [32]. In fact, some research has found evidence that older lesbians value and prioritize sex throughout the aging process and the later stages of life, while sexual activity generally declines for some, and may be strongly reliant upon their relationship status [2, 13] or health status [32]. Regardless, additional research is clearly needed to clarify the particular context and definitions of both social and sexual

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relationships of lesbians throughout their unique life course. Marriage In a landmark decision on June 26, 2015, the U.S. Supreme Court ruled that same-sex couples have a constitutional right to marriage. This ruling effectively overrides any existing state laws prohibiting the recognition of marriage equality for all same-sex couples. While this Supreme Court decision will have long term implications for members of the LGBTQ community, it may be helpful to understand the long history of challenges for lesbians pertaining to the struggle for civil unions, domestic partnerships, marriage and ultimately marriage equality. As of early 2015, there were thirty-six states (and the District of Columbia) that provided the opportunity to obtain legal marital status for same-sex couples, with ten states that recognized civil unions or other same sex partnerships. In contrast, at this time, there were a total of fourteen states that had laws directly prohibiting the recognition of same-sex marriages. At times, such laws were challenged within several state-level district courts with regard to their discriminatory stance [33]. In 2013, The United States federal government decided it would no longer enforce any law or policy against marriage equality, following the overturn of the Defense of Marriage Act (DOMA) which was signed into law by President Clinton in 1996. However this did not equate to national same sex marriage equality, nor did it end all discrimination toward same-sex couples or families (Pelts, 2014). The significance of overturning DOMA and the movement toward equality provided an opportunity for members of the older lesbian community to finally seek the rights and privileges that they have struggled for throughout their lifetimes [33]. The recent availability of marriage is a huge success for lesbians who struggled for decades with challenges pertaining to limitations and inaccessibility to marriage based on the state in which the lived, or to those who did not have the access or the means to travel to one of the states legally supporting same-sex marriage. Their home state may also not have recognized such marriages upon their return, providing significant legal ethical, and other such challenges – all of which may have had the potential to negatively impact mental health and increase

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stressors among the lesbian community [34]. Lesbians were ultimately faced with the need to effectively plan (legal and otherwise) if their marriages were not recognized in their home state ultimately requiring the assistance of competent professionals and other resources [31]. In contrast, many studies suggest that legalizing marriage for same sex partners ultimately has positive impacts on mental health factors [34, 35] and their overall well-being. Another important aspect pertaining to his discussion surrounding marriage is the misleading assumption that marriage equality is the “final frontier” for LGBTQ civil rights. Myriad challenges remain related to discrimination and policies impacting adoption, parenting, housing, employment, immigration and other legal matters for lesbians as well as other members of the LGBTQ community. Parenting Estimating and fully describing the current number of lesbian mothers and couples can be extremely difficult. Census data in the United States allowed for general estimates that approximately 293,365 lesbian, or same-sex female couple, households existed in the United States in 2000. However significant methodological problems exist and these numbers could be significantly higher [36]. What can be stated with certainty is that the lesbian-headed family form has been occurring more frequently in recent decades, with increased visibility in the public sphere that has led the literature to refer to a so-called “lesbian baby boom” [37] within contemporary society. Though lesbians are less likely than heterosexual women to report having biological children of their own [38], they may still conceive a biological child or build a family in numerous other ways. Recent research suggests that nearly 28% of same-sex women couples have children under 18. These families may be more likely to be racially/ethnically diverse than the LGBTQ community generally, and experience greater financial difficulties than their non-LGBTQ counterparts [39]. The difference in pregnancy rates between LGBTQ and non-LGBTQ women is notable. Over 89% of non-LGBTQ women experience pregnancy, compared to 61% of ‘mature’ lesbians (or those who identified as lesbians later in life), and 34% of ‘lifetime’ lesbians (or those who identified as lesbian at earlier ages) [38]. This indicates that the longer one identifies with and practices a lesbian identity,

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the less likely it is that a woman will have a biological child. The rates of adoption among the lesbian and gay community generally have risen significantly in the past decade [40]. However, more recent research indicates biological children still make up the majority of children raised by same-sex households, and that of LGBTQ people who report having had biological children – 80% are women [39]. There may also be a shift from LGBTQ people having children within oppositesex relationships (i.e., prior to coming out), to building families within the context of a same-sex relationship. However, lesbians who have biological children are still more likely than their heterosexual counterparts to have their first child at a younger age [40]. Lesbians who choose to become a parent through pregnancy while identifying as a lesbian also face unique challenges in the process of pregnancy and childbirth. This is particularly true in their experience of the health care system and in their interactions with health care providers. Lesbians are a vulnerable group when encountering maternity care [37], partly because of health care providers’ uncertainty, discomfort and anxiety regarding same-sex couples having children. There remains an overall lack of knowledge by healthcare providers about the health needs of lesbians, raising significant issue related to equal treatment regardless of sexuality. Ultimately, inclusive and competent medical care is crucial to a lesbian mother’s well-being during pregnancy [37] and thereafter. Family Structure Lesbian families must negotiate their family structure and identity like any other family, and may “experience affirmation and disconfirmation of their family identities from external systems, such as families of origin, social networks, sperm donors, community members, and institutions” [36]. Thus, a family’s conceptualization of their own structure is either supported or undermined by externally generated opinions. Furthermore, lesbian families often receive a full range of reactions, from positive to negative, among many social systems and institutions. Examples of negative reactions include: non-recognition of the nonbiological co-parent by family and the legal structure, discrimination and homophobia in social institutions (e.g., schools, hospitals, religious groups), stigmatization of children of same-sex parents in their communities, and societal

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discrimination and/or homophobia [36]. Despite these reactions, an increasing number of lesbians and lesbian couples are undertaking and embracing motherhood and forming families in tradition and non-traditional manners while actively facing obstacles and challenges from heteronormative social institutions. ENTITLEMENTS, POVERTY AND ISOLATIONISM The financial and support resources of older lesbians are inhibited by the fact that a greater proportion of members of the population, as compared to the nonLGBTQ population, are living alone in their old age [41]. Women comprise the majority of those 65 and older, and those who live alone “have the smallest incomes of all older age cohorts” [13]. An individual’s financial situation is critical to their experience of the aging process. One study found that over two thirds (70%) of LGBTQ adults felt financially unprepared for the aging process, and that LGBTQ communities experience significant economic disparities [15, 19]. Financial concerns have been found to be a significant concern for lesbians while aging, which may negatively impact an individual’s mental health [31]. The Older Americans Act (OAA) is the framework through which most services for older populations in the United States are provided [15]. However many necessary supports and services, such as assisted living facilities or home support, are often expensive. Medicare, Medicaid and other insurance sources are often insufficient to make these expenses feasible. Additionally, these sources may not consistently provide the same benefits to same-sex couples that they do to opposite-sex couples [13, 15]. The necessity of increased access to health care systems during the aging process may increase fear for older lesbians including experiences of discrimination, which can in turn increase isolation, self-neglect, poorer life quality and mortality [1]. Isolation may also result from a number of other factors, including geography and an individual’s personality [31]. Many lesbians may rely heavily on members of the larger LGBTQ community, networking support among themselves [13]. However, ageism may limit the community support available, as research shows lesbians are often considered old by the age of 50 [15]. Further, though a variety of LGBTQ specific activities, services, programs and supports are increasingly available, not all older lesbians may choose to engage in them for a variety of

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reasons [31] including preference for non-LGBTQ programs, location, setting, time, or other such factors. CAREGIVING The impact of aging and necessity of supports related to caregiving, housing and daily needs can create unique challenges for older lesbians. This is true for both caregivers and those being cared for. These challenges include encountering systemic barriers stemming from the need to find an affirming and supportive retirement home/assisted living facility. Older lesbians are more likely to live alone or in isolation [42]; lack ‘families of origin’ (e.g., parent, sibling or child) to support them, and may rely upon ‘families of choice’ (e.g., friends) to assist with health and care needs as they age [43, 44] becoming increasingly dependent upon others [18]. Thus, caregiving among older lesbians may provide insight into the role of collective community resilience, and underscore the value and impact of taking care of one another due to fragmented connections with family members, socioeconomic needs, or other such relevant matters. However, families still provide the most care to older individuals, and research in one study found that 40% of lesbians age 60 or older had children [42]. What remains challenging is that children of lesbian relationships may be denied access in healthcare settings if they are not a biological child of a particular partner [45]. Additionally, children may not always be a source of support, and may even reject a parent for their lesbian identity [13]. Such isolation, poverty and lack of support may impact an older lesbian’s mental health care, physical health care, and their access to necessary healthcare services overall [31]. Lastly, after potentially spending many years out of the closet, older lesbians may fear the need to re-closet themselves for their own safety or be challenged with invisibility by staff and other residents within certain environments [18]. Such matters may be compounded by the failure to: receive adequate health and mental health services; have social, emotional and/or cultural needs met; and acknowledge life partners, families of choice (rather than birth families), and close friends. This is accompanied by isolation from the general residential community and other supportive social networks [25].

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LOSS, GRIEF AND DEATH Understanding topics such as loss, grief, death and dying among the older lesbian community also provides a unique opportunity to understand their diverse needs. Older lesbians experiencing losses or situations related to the grieving process or death may experience heightened health and mental health needs due to the cumulated effect of multiple losses over their lifetimes [46], while also having to manage or navigate end of life care, wills and estates, or other often cumbersome legal matters [30]. For example, some lesbians may struggle to cope with loss or grief while being forced into silence by situations such as the loss of a loved one who may not have been accepted by family, or coping with traumatic events (i.e. loss due to HIV/AIDS or accidental death). During such circumstances a lesbian may be incapable of sharing memories with others [25] that may not provide positive or supportive reactions. A limited amount of literature has examined the pivotal role lesbians and gay men played as caregivers during the start of the HIV/AIDS epidemic in the early 1980s through the mid-1990s, while losing many of their close gay or bisexual male friends. The long term impact of experiencing such a large number of significant and meaningful losses for members of older lesbian cohorts has yet to be fully understood [44]. HEALTH & CARE LGBTQ elders are living relatively uncharted lives [41] as much of their experience of health in their later years is still relatively unexplored [31]. Older lesbians may face patterns of insensitivity, neglect, discrimination, bias, and mistreatment in the health care system, as well as fractures within other systems of social supports for the aging [19, 31, 41]. While typical health factors that impact the general population (e.g., arthritis, vision and hearing loss) also impact older lesbians, there is evidence demonstrating increased risk for cardiovascular disease, obesity, and lower likelihood of regular mammograms [5], among other health concerns specific to lesbian and bisexual women. In general, members of the LGBTQ community tend to be more cautious, and at times hyper vigilant, about their interactions with health care systems, and may have particular concerns about the conditions surrounding their long term needs and the specific location of receiving such care [2]. Older lesbians have also been found to re-enter

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the closet in health care settings, not disclosing their lesbian status to health care providers 31]. Unfortunately, while LGBTQ specific services exist, the access of people to these supportive services and systems may be limited by a number of factors, including transportation barriers or geographical distance [31]. Thus, while resilient in many ways, older lesbians remain an at-risk population experiencing significant health disparities [5]. MINORITY STRESS THEORY Theoretical frameworks often assist us with understanding behaviors associated with risk, stress, resilience and coping that may impact the health, mental health and care of minority populations, including lesbians. One such theory – minority stress theory – proposes that health disparities among LGBTQ populations (e.g., lesbians) can be explained in large part by stressors induced by a hostile, homophobic culture, which often results in experiences of external prejudice, expectations of rejection, and internalized homophobia [47, 48]. This all may ultimately impact behavior, risk factors and access to services and care [49]. While minority stress theory has been applied to many populations, including women, immigrants, impoverished and racial/ethnic minorities [47], a limited amount of the literature has applied the theory to sexual minority populations [50]. The application of a theoretical framework for understanding risk behavior among older lesbians may hold major implications for understanding behavior and effective interventions to utilize among this sub-population. There are certain aspects of minority stress which may be exacerbated by one’s perception of prejudice and/or experiences of stigma/rejection. These elements may have correlations with mental health difficulties (e.g., depression), as well as detrimental strategies that assist with coping or avoidance [51] including sexual risk behavior or substance use, among other risk factors. Continued examination of such factors may be necessary to clarify the effects of both perceived and actualized experiences of victimization, discrimination and harassment on all LGBTQ individuals, as well as elucidate the impact of such experiences upon risk and protective factors, including the correlation with sexual risk behaviors [52]. Such research is necessary to develop effective and culturally competent interventions and approaches to service provision. Understanding the implications

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of minority stress theory upon health and wellness among older lesbians also requires greater considerations of correlations with other socio-demographic factors [53] including race/ethnicity, socioeconomic status, age, rural or urban setting, and other relevant factors. RISK AND PROTECTIVE FACTORS While a focus on resilience and strengths is a priority framework through which discourse surrounding lesbian health and mental health must emanate, understanding potential risk factors is also a necessity. A study in the United Kingdom found suicide attempts among lesbians over a ten year period ranged between 20-31% among the overall LGBTQ population [54]. The same study showed that the rate of mental health problems in the same ten years, from 1995 2005, remained between 31- 35% of the lesbian population for the duration [54]. These estimations of mental health problems among lesbians are significantly higher than the 11% of women in the general population who have anxiety and depression. Eating disorders among lesbians may also be disproportionate, though research has demonstrated large fluctuations (which could be due to methodological difficulties) and a limited amount of existing research in this field. Stress resulting from the stigma associated with identifying as a member of the lesbian community may also play a significant role in understanding the impact of such disorders among sexual minority populations. Additionally, as lesbians may be less likely to seek or receive treatment, the extent of such health disparities and diagnoses may in fact be greater and widely unknown [54, 55]. Among various sub-groups of the older lesbian population that should be examined specifically are those who also identify as ethnic or racial minorities [56]. It is often quite important to acknowledge the compounded impact of “intersecting forms of oppression based on race, sexual orientation, and poverty” [57]. In a study on substance abuse among LGB people, dual minority status arising from ethnicity and sexual orientation acts to increase “vulnerability to the adverse mental health consequences of discrimination” [58]. It is important to note that the research on the dual or often multiple barriers that minorities may face when seeking treatment is lacking at best.

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ALCOHOL, SUBSTANCE USE AND ADDICTION Research has indicated increased incidence of a variety of health problems among older LGBTQ individuals when compared to the general population, including an increased prevalence of alcohol and substance use, as well as a correlation with mental health concerns, substance use disorders and dual diagnoses [17]. When compared to an average of 10 - 12% of the non-LGBTQ community, some estimates indicate 28 - 35% of lesbians and gay men [59] currently or have previously used recreational drugs; with correlating higher rates of addiction [60]. Risk factors faced by the older lesbian community include those related to use of long term alcohol or other substances utilized to mediate stressors that may have occurred throughout their lifetime; or to cope with stressors or strain that may be initiated later in life. Depending upon various circumstances faced by older lesbians, such as: negative life experiences, preparing for retirement, lessening of overall physical activity, and/or changes within family systems and relationships – stress levels may also increase due to isolation [61, 62]. Such life circumstances potentially heighten the likelihood for some of the previously described maladaptive coping mechanisms as a way to manage these life stressors [60]. Such health and mental health struggles clearly deprive older lesbians of a positive quality of life and impacts their overall wellness and well-being [60]. Other factors that may increase the likelihood for substance use disorders among older lesbians include those age cohorts affected by unsupportive environments, institutions and negative societal attitudes [17]. Another area for continued research relates to indications of higher rates of smoking among older lesbians when compared to non-lesbian counterparts [5, 63]. Thus, a substantial need remains for further study related to the impact of alcohol and other types of substance use among lesbians, as well as the larger LGBTQ community – including a need to identify appropriate affirming and competent treatment approaches and interventions. SEXUAL HEALTH One of the most common myths of aging among all older adults is the fallacy that many, if not all ascribe to asexual behaviors [64]. Homosexuality as a physical and psychological sexual orientation, like heterosexuality, is assumed to be

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irrelevant to a person’s health and aging process later in their lives. This is quite untrue, as the self-identification of oneself as a lesbian remains relevant in one’s life and health into her older years, and may even become more crucial in one’s experience of health and well-being. Lesbians are like any other population, in that later in life they usually require more heath care and social supports, and therefore often experience more interaction with such systems at that point in their lives [64, 65]. As a result, they may face more pronounced or chronic systemic barriers as well as forced silences that relate to their sexuality in these contexts, and encounter more discrimination with health care providers as a result increased interaction. Practitioners and those within care providing industries must overcome biases about older adult sexuality in order to provide more effective and competent support [18]. Simply seeking permission to talk about sex and sexuality with an older lesbian conveys sensitivity and respect, while empowering the client [65] to take control of her overall sexual health needs. SEXUALLY TRANSMITTED INFECTIONS One report underscored that more than half of LGBT older adult participants (55%) reported sexual activity within the past 12 months [5]. However, lesbians are typically at reduced risk of contracting a number of sexually transmitted infections (STIs) that include HIV/AIDS, chlamydia and gonorrhea. While transmission of STIs is theoretically possible, it is rare among lesbians overall, as a reduced risk remains among women who have sexual relations only with other women because of the nature of their sexual interactions [38, 66]. However, this does not mean that lesbian women are safe from all sexually transmitted infections; in fact quite the opposite is true. Besides the rare occurrences of the aforementioned infections, lesbians are at risk of getting several other well know STI’s, including herpes, bacterial vaginosis, HPV (which causes genital warts), trichomoniasis and hepatitis B [38, 66]. It is also important to recognize that lesbians may contract STI’s outside of samesex sexual relations. In the case of HIV/AIDS, for example, exposure to HIV for lesbians usually takes place either through the sharing of needles (in the case of an intravenous drug user) or through sexual intercourse with an HIV infected male partner [67]. Lesbians who have sex with men may also be at risk for pregnancy,

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and all the same sexually transmitted infections as all other women who have intercourse with men [66]. SERVICE PROVISION As the contemporary LGBTQ population ages, they may be less likely than previous generations to return to the closet. Instead they may advocate against discrimination, and for more inclusive supports and services [15]. Such advocacy has significant implications for service provision when discussing older lesbians, as some of their most pressing needs include: senior housing; transportation; inclusive social events and support groups; and legal services [5] among many others. Additionally, recent research has challenged the notion that older LGBTQ people “are mostly isolated, unhappy, and desperate for affection” [1]. However, the majority of this research on the stereotypes older LGBTQ people experience has tended to focus upon older gay men. The unique experiences of aging lesbian, bisexual and queer women [1] are often overlooked and underemphasized, while much of the research that does exist specifically addressing older lesbians and their care is often limited and/or outdated [2]. Ultimately, all LGBTQ individuals have a right to home-based, community-based and institutional services that recognize the unique, contextual experiences of this population; services which provide them with the ability to age with dignity and respect [15, 31]. It is unclear whether general services for older adults meet, or even appropriately acknowledge, the specific needs of LGBTQ populations [15], and research has been mixed regarding older LGBTQ peoples’ preferences for identity-specific services. Some studies indicate the population prefers services with sensitivity or specificity to their LGBTQ identity, while others suggest these preferences are not particularly prevalent [1]. However, there is often fear, anxiety and/or apprehension over discrimination (such as homophobia and heterosexism) within health care settings, particularly residential services, which may result in some LGBTQ people actively avoiding accessing care or services [15]. There is also some indication that identity sensitive or specific services (which proactively address discrimination and prejudice) are a particular consideration when older LGBTQ people are selecting a retirement/assisted living community and other similar types of facilities [1]. Lesbians in particular, compared to gay men, may be

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more likely to be concerned about discrimination in such facilities, and LGBTQ people generally indicate belief that sensitive or specific facilities would be positive for the aging LGBTQ population [1]. An older lesbian’s interaction with the medical system, with its opportunity for discrimination, homophobia and ignorance, can be detrimental to her mental health as a result of the lack of treatment she may receive [67]. Older lesbians are often forced to hide their sexuality in health interactions to prevent the occurrences of discrimination and homophobia they have feared or experienced during their lives. Lesbians can also feel legally and culturally isolated as they age, causing undue stress and negative psychological impacts that can inhibit their good health later in life [38]. Older lesbians can face discrimination and homophobia within other social service programs are generally tailored for the larger aging population, may utilize them less, and ultimately experience a poorer quality of care [5, 41]. For aging lesbians in particular, lack of insurance inhibits access to systems of care for health and mental health concerns [15]. There are extremely few services or programs geared solely towards older lesbians that are affirming and competent; though when they do exist (e.g., socialization or recreational programs at LGBTQ centers), they are heavily used and positively reviewed [41]. IMPLICATIONS FOR PRACTICE & CONTINUED RESEARCH AFFIRMING MODELS OF CARE While making significant progress in recent decades, the field of social work and other counseling professions have historically been criticized for a general lack of knowledge about, as well as attention and sensitivity toward, the unique needs of aging LGBTQ individuals [3] as well as sub-populations including older lesbians. Social workers, and other helping professionals, may make assumptions about older LGBTQ people which negatively impact their provision of services [1]. These professionals may also make assumptions about heterosexuality when working with older adults, limiting a client's ability to acknowledge their sexual orientation and relationships which may contribute to their overall sense of wellbeing and safety within institutionalized systems [15]. Helping professionals should consider the particular needs of older lesbian clients, and be informed

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about relevant community based resources that best meet their health, mental health and socialization needs [15] especially pertaining to their gender and sexual orientation. Though there remains a dearth of literature exploring the life span of lesbians, practitioners should be sensitized to the potential for unique needs, embracing their diverse lived experiences, associations with age cohorts, and notions of identity [29], among other significant factors previously discussed throughout this chapter. Utilizing affirming models of practice [68 - 70] that include a ‘person in environment’ and strengths-based perspective, will likely assist with the affirmation of an individual’s lesbian identity and promote self-determination. Such affirming models of care underscore resilience, while examining and positively affirming a lesbian client’s identity, history and self-awareness; assisting with management of internalized phobias and fears as needed; working with the client’s relevant supportive and fragmented systems (e.g., family, friends, religious); exploring awareness of other supportive or fragmented environmental influences (e.g., workplace, nursing home); assessing previous experiences with supportive or maladaptive systems of care and/or counseling relationships; and securing access to LGBTQ supportive networks [70, 71] whenever appropriate. Additionally, researchers and practitioners should fully understand the interpersonal, social and political realities of their older lesbian client’s lives, as well as their family’s needs [6]. Many of the existing recommendations in the literature with regard to social work and older LGBTQ people focus on clinical practice, with a lack of attention to community or policy level work. Attention had been paid to differences in LGBTQ needs with regard to: “bereavement counseling, relationship counseling, emotional and physical changes that come with age, and legal planning… as well as institutional barriers such as visitation and consent to treatment regulations in hospitals and the provisions for sexual expression in long-term care facilities” [3]. However, research demonstrates a hesitancy and resistance within community based agencies to provide sufficient resources about, or outreach to, the older lesbian community. While older lesbians, along with other LGBTQ people, are particularly likely to advocate for “responsive and culturally sensitive services and

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policies” [15], the field of social work must address the larger systemic issues within institutions which inhibit culturally competent care for older LGBTQ clients in addition to considerations at the level of clinical practice [3]. Literature has also suggested the need for ongoing “sensitivity and cultural competence trainings for administration, staff, and other residents of care settings” [15] to facilitate an affirmative, safer and overall more positive climate for all LGBTQ residents. CONCLUSION This chapter considers some of the most relevant health and well-being factors impacting older lesbians. While not an exhaustive examination of the diverse community of older lesbians, understanding the unique factors that may impact various members of this population is often timely and relevant - as significant differences exist related to age cohort and other socio-demographic factors, including: socioeconomic status, race/ethnicity and rural/urban location. Additionally, as members of the LGBTQ community are often at risk for health concerns, such as substance use or sexually transmitted infections, it should not be assumed that these factors are experienced uniformly by all individuals. A strengths-based approach to assessment and treatment should always afford the opportunity to underscore the resilience of members of the older lesbian community, as well as to provide competent and consistently affirming care. The aging experience of lesbians as well as all those within the LGBTQ community brings multiple challenges at many stages of the process. The unique needs of the pre-Stonewall lesbian community must be clarified and further understood in order to disseminate such knowledge more broadly across the general LGBTQ population, but more so among those providing care to this uniquely diverse community. CONFLICT OF INTEREST The authors confirm that they have no conflict of interest to declare for this publication.

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ACKNOWLEDGEMENTS Declared none. REFERENCES [1]

Johnson MJ, Jackson NC, Arnette JK, Koffman SD. Gay and lesbian perceptions of discrimination in retirement care facilities. J Homosex 2005; 49(2): 83-102. [http://dx.doi.org/10.1300/J082v49n02_05] [PMID: 16048895]

[2]

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CHAPTER 12

Reducing Stigma of Aging and Dementia through Experiential Learning Darby Morhardt* Cognitive Neurology and Alzheimer's Disease Center, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, United States Abstract: Background: There is evidence that the stigma regarding older adults can be modified with experiential opportunities early in medical students’ careers. The Buddy Program pairs first year medical students with persons with dementia to develop a mentoring relationship outside of the clinical setting. Methods: Using qualitative content analysis of journal entries kept over an academic year, this chapter examines the experience of a female medical student paired with a 74-year-old woman with Alzheimer’s disease. Results: Emergent themes included - 1) recognition of the evolving nature of the students’ thoughts about dementia over time, 2) the student’s awareness of the subjective response of the person with dementia, 3) the student’s own emotional reactions to the person with dementia, and 4) the student’s understanding of the family experience. Conclusion: As a result of taking part in the program, this student experienced a more holistic view of the person with dementia and her family and a changed perception of dementia and what it is like to live with it.

Keywords: Attitudes, Dementia, Health care, Medical student. INTRODUCTION The United States population is aging rapidly and as a result there are an increasing number of persons living with dementia. Over the past ten years, there has been a significant focus on training the health care workforce to have the attitudes, knowledge and skills to provide care for older adults and the cognitively Corresponding author Darby Morhardt: Cognitive Neurology and Alzheimer's Disease Center, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, United States; Email: [email protected]. *

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

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impaired. There is evidence that prevailing stigma regarding older adults can be modified with experiential opportunities early in students’ careers. Few of these programs are aimed at persons with dementia. This chapter describes the experience of a female medical student paired in an experiential learning and mentoring program with a 74-year old woman with Alzheimer’s disease over an academic year. SIGNIFICANCE AND BACKGROUND Aging and Dementia Those 65 and over represent 13.3% or 41.4 million of the U.S. population (an 18% increase since 2000) and are expected to grow to 21% of the population by 2040. Projections indicate that they will more than double to 92 million in 2060 [1]. The greatest increase in the U.S. population will be among those ages 85 and older. This cohort is at the highest risk for dementia, particularly dementia caused by Alzheimer’s disease. The biggest risk factor for dementia is age and approximately half of those over age 85 are estimated to have the disease [2]. Dementia is a description of symptoms that can be caused by different brain disorders. It has an insidious onset and a gradually progressive loss of cognitive function such as thinking, remembering, and reasoning and/or changes in behavior, emotion, and personality. Dementia symptoms affect the person’s ability to manage their daily life and activities compared to their prior functioning. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s abilities, to the most severe stage, when the person must depend completely on others for basic activities of daily living [3]. Among people over age 65, Alzheimer’s disease (AD) is the most common form of dementia. Over the last 25 years, health and social service professionals, researchers, policy makers, and society as a whole have become more aware of dementia, particularly Alzheimer’s disease. The National Institute on Aging estimates [3], over 5 million Americans have Alzheimer’s disease as a cause of their dementia and others have related neurodegenerative diseases. The Alzheimer’s Association reports Alzheimer’s is the sixth cause of death in the country [4]. Based on mortality data

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from 2000-2008, deaths have risen 66% for Alzheimer’s disease while the cause of death for most major diseases has declined [4]. As a consequence of increased longevity and expansion of the older adult population, it is projected that by 2050, AD will affect 13.2 to 16 million United States citizens [2]. These facts contribute to a growing demand for health care professionals trained and committed to working with persons with dementia [5, 6]. Currently, less than one in four people with dementia receive a formal diagnosis [7 - 9]; therefore, they are not receiving appropriate care, treatment and support. The number of geriatricians is few and declining, leaving general internists and primary care physicians along with other health care professionals the task of providing the majority of health care for older people and those with dementia [10]. It is important that these clinicians have the attitudes, knowledge and skills to best care for older adults and the cognitively impaired. Education and Training in Aging and Dementia On January 4, 2011, President Barack Obama signed the National Alzheimer’s Project Act (NAPA) (Public Law 111-375) [11]. One of the five concrete goals to achieve the vision of NAPA is to enhance care quality and efficiency by building a workforce that can give high-quality care for people with Alzheimer’s disease [12]. Although assessment and management of Alzheimer’s disease and related dementias has been widely disseminated among healthcare professionals, many have not acquired the knowledge and skills [7, 13, 14]. Medical professionals, both in the hospital and in the community find it challenging to provide competent care for patients with dementia [15, 16]. One of the major challenges is the negative attitude that healthcare professionals historically have had toward older adults leading to limited knowledge and interest in pursuing geriatrics or dementia [17 - 29]. While there is evidence that teaching geriatrics in general can impact medical students’ acquisition of knowledge, skills and attitudes [20, 30 - 33] few learning outcomes focus on dementia and the majority have not addressed the lack of trained healthcare professionals who simultaneously understand the strengths, limitations, and needs of persons with memory impairment and dementia. A survey of more than 500 hospital and community physicians in the USA cited better understanding of dementia as the most commonly identified learning need

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[34]. METHODS The Buddy Program is an experiential learning and mentorship program for first year medical students paired with persons with dementia. The program [35] has been replicated nationally and internationally. The intention of the program is for the student and person with dementia to develop a friendship and share experiences rather than participate in a traditional doctor/patient relationship. This is also an opportunity for the person with dementia to share their experience and knowledge. Students are paired with diagnosed individuals in the early stage of dementia who are still able to manage their own personal care independently and are able to engage in a give-and-take dialogue [7]. The ‘buddies’ get together throughout the year and engage in activities, such as visiting museums, attending sporting events, sharing a meal or simply going for a walk. The goals of the buddy program are to educate medical students about Alzheimer’s and related conditions which includes not only increasing their knowledge, but also developing an awareness of remaining skills and strengths in people with cognitive impairment. Opportunities are provided to see how the person with dementia responds to his or her own changing abilities and students are familiarized with the daily care and support of persons with dementia and their families [35]. Students are required to write a journal reflection following each activity with their mentor in order to provide a vehicle for personalizing the experience and make sense of it both intellectually and emotionally. Utilizing qualitative methodology within an interpretivist/constructivist paradigm [36, 37], the author conducted a qualitative content analysis of 27 students’ semistructured journals over the course of three academic years [38] using NVivo 10. This methodology allowed the author to systematically make inferences about the student’s experience by recognizing patterns or themes [39]. One first year medical student, was chosen for this paper because she wrote significantly more than her peers, documenting her thoughts and reflections with her mentor after meeting with her nine times over the academic year.

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RESULTS The following themes emerged in the analysis of the student data. Theme #1: The Evolving Nature of Beliefs Over Time The student had several expressions of enjoying time with the mentor, experiencing common interests and developing a sense of friendship. For example, the student expressed relief at the ease and comfort she experienced in an early meeting: Today I met (my mentor) at the Art Institute by the lions. She was there, waiting at the top of the steps…I made a bee-line towards her smiling, and she seemed to respond; she either recognized me or recognized my behavior. Either way, it was easier than I thought it would be and (my mentor) seemed genuinely happy to see me. (504_2009.11.5)

A couple of months into their relationship, the student expressed feeling increased comfort with the sharing in their relationship: (My mentor) seems to be sharing a little more with me. I heard a lot more about her grandchildren and their medical conditions (which are actually pretty severe). I’m not sure if she told me more because that’s where the conversation went or if she is starting to feel more comfortable around me. (504_2010.1.29)

However, in March around the end of the year’s mid-point, the student frankly described her frustration at hearing her mentor repeat the same thing over and over, but expressed recognition of her own self-growth as a result of this challenge. I must admit I have been getting a little frustrated in talking to (my mentor) at points. When she asks me the same question for the sixth or seventh time in two hours it can be a little tedious. I try very hard not to show this and I feel really bad when I get frustrated. Being a naturally very impatient person I think it has been good for me to go through this and try to be more understanding. (504_2010.3.4)

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Reflecting over the entire year the student summarized: I think I learned a lot from (my mentor). What was most striking was her independence. Despite being afflicted with severe lapses in memory, (my mentor) was still able to live alone and lead a healthy life. Not only this, I was always amazed by her flexibility. Even when she didn’t remember I was visiting, she was happy to welcome me into her apartment, set an extra place, and go gallivanting off around the neighborhood. I think one of the most valuable lessons I learned from (my mentor) was that just because you have a pretty severe condition doesn’t mean that you have to let it rule your life.

Theme #2: Awareness of the Subjective Response of the Person with Dementia To illustrate this theme, the student provided descriptions of her perception of her mentor’s fear, frustration and discouragement and included her mentor’s concern over the disease progression, such as, “(My mentor) is a little scared about what is happening” (504_2009.11.5) and later in the year, she expressed, In our walk, (my mentor) mentioned that the biggest thing she has had to get used to is doing things a lot more slowly and deliberately. I think she…. is getting somewhat frustrated by the extra effort required to maintain her lifestyle. (504_2010.1.18)

This sensitivity to her mentor’s mood and response to symptoms revealed the student’s sensitivity to the emotional impact the illness was having on her mentor and the increasing challenges of this progressive disease. The following month she stated: I asked (my mentor) how she was doing and she said, ‘okay. Just okay.’ I think she has gotten lonely and said she was having a lot of trouble adjusting to not having a car. She leaves the house a lot less and I think this is starting to get to her. She also said she has been feeling differently lately. She described it as feeling like she was ‘just here’. I took that to mean she had no real purpose; she had nothing to accomplish in a day and very few people to see. (504_2010.2.18)

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This perception of mood led to more empathic expressions that were defined as the student’s ability to acknowledge what it might like to live with the changes, or to put herself in the ‘shoes’ of her mentor: She is very concerned that she’s telling me the same thing again, which some of the time is true. She has a vague recollection that she’s told it to someone but she’s not sure whom. I think this really bothers her …This must be especially hard …it sounds like she is a little scared about what is happening … I can imagine facing Alzheimer’s would be an incredibly overwhelming task. (504_2009.11.5)

Later, that same year, the student continued to imagine what her mentor was experiencing: The whole time we were walking she didn’t know where we were going (she couldn’t remember) but she never asked where I was taking her or got confused about where we were headed. Her trust in my lead and her flexibility to go wherever is pretty remarkable I think. I imagine it would be a very scary thing to not know so much about what is going on around you but to be game for an excursion anyway. (504_2010.3.19)

Theme #3: Curiosity Regarding Dementia Symptoms It is unreasonable to expect that medical students will not put on their ‘clinical cap’ at times when reflecting on their time with their mentor. This student expressed her concern and opinion regarding her mentor in the following way: She also talked about sometimes when she was bored she would jump on the bus and go somewhere new to explore. I think she really enjoys this and is currently able to do it but I remember the time she got lost looking for me so I think if her status deteriorates anymore it might become a little unsafe for her to be gallivanting around town. (504_2010.4.7)

There was also a sense of curiosity about the disease symptoms leading to inquisitive statements and questions regarding how the memory loss and other cognitive symptoms were expressed in their mentor.

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For example the student made thoughtful observations regarding her mentor’s symptoms with appropriate questions that reflected an eagerness to probe for further understanding of what is causing these symptoms to occur in these ways. While perusing the museum I thought an interesting contradiction of her memory loss came up. She couldn’t remember which rooms we had just come from so I was guiding us along. However, when we entered the Caravaggio room she commented on how the pictures had been rearranged since the last time she was here. I imagine the last time wasn’t that long ago and it strikes me as odd that she could remember that level of detail... It is also interesting which details about me she remembers. When we first got to the museum she asked me if I had been before, and if so which parts I had seen. In response, I told her I had seen some of the impressionists. She remembered this tidbit and mentioned it at least twice after that point. On the other hand, when we were nearing the end of our time at the museum and then twice again within ten minutes, she asked me how much time I had to spend with her that afternoon. I’m not sure if the fact that we had been together for an hour so her memory was somehow ‘fatiguing’ (I don’t know if this actually happens) or the nature of the information made a difference, or if it’s completely arbitrary which things she remembers and which she does not. (504_2009.11.4)

This student continued to muse on her curiosity regarding puzzling brain function throughout a number of her journals, such as: Invariably she will ask multiple times during a meeting where I live, and today was no exception. Then at almost every lull in the conversation she would ask me what I liked to do for fun, followed up by ‘do you like movies?’ I think she asked me about 5 times over the course of the visit. …I think it’s interesting how much (my mentor’s) memory fluctuates in the course of a meeting…I guess I’m curious as to what pieces of information, if any really, get cemented in her mind. (504_2010.3.4) … it is interesting what things stick in (my mentor’s) mind and what do not. (504_2010.3.19)

Theme #4: The Student’s Understanding of the Family Experience This final theme included expressions about the student’s interactions with and

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observations of the family. The following is documentation and view of the family dynamic and insight and empathy for her mentor’s daughter. The student had the opportunity to attend an annual benefit with her mentor, her mentor’s daughter and son-in-law. At one point she spoke to the family when her mentor was not present and had an empathic and poignant response: I enjoyed spending a little time with (my mentor’s) daughter and her husband. I talked to both of them individually a little bit about (my mentor). The son-in-law’s perspective was that (my mentor’s) daughters probably weren’t as concerned as they should be, but he was also a little hesitant to take on more responsibility for her. He also said he’s noticed a big change in her since what she used to be. His description was that the last time she was at his house ‘she might as well have been a chair’ because she was quiet and basically had no interaction with the family. He said she’s not at all the person she used to be. It was also interesting that he said his wife and her sisters get annoyed with (my mentor) over little things, like her always asking for (his wife’s) number because she thinks she doesn’t have it. His reaction was that they should save this frustration for situations, which are more potentially dangerous, such as (my mentor) getting lost. However, I wonder if (my mentor’s daughter’s) reaction might not be one towards the phone numbers rather a sadness at losing her mother.

The student went on to say: I also think that (my mentor’s daughter) is in a position where she doesn’t know what (my mentor) needs and isn’t sure she has the time to provide the help. She mentioned she would have liked to go to the early-stage caregiver group but it wasn’t very practical since she lives an hour away and it would conflict with when her kids were getting home from school. It will be interesting to see what happens when (my mentor’s) condition deteriorates a little more…(504_2010.5.9)

The above journal entry is a reflection of the intergenerational family dynamic and how the family’s response affects the person with Alzheimer’s and each other. The student related her observation of the family interaction and recognized in her reflection how important the caregiving family is to the health and well being of the person with dementia over time. She was also sensitive to the

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struggle the family experiences as they attempt to adapt to her mentor’s increased dependency and the struggles they may face in the future. This understanding of the family context provided the student with a new and different lens with which to view her mentor. DISCUSSION Social workers traditionally see the individual within a larger social context. In this study, the medical student is challenged to do the same and is able to view and relate to the person with dementia within her own environment. The relationship that developed between the student and person with dementia allowed the student to derive a more holistic understanding of her mentor and provide a biopsychosocial perspective that the student can integrate into her role as a future doctor. The buddy program’s premise of ‘positioning’ the person with dementia as a mentor to a young first year medical student allowed the student the opportunity to look beyond the label of ‘dementia patient’ as is seen in the clinical setting. The student is told that the person living with cognitive changes has something of value to impart; therefore, the person with dementia in this study was purposefully given an active role and cast as a collaborator in education and research and the facilitator of the student’s attitudes and learning. As a result, the student was able to recognize her mentor’s uniqueness, remaining strengths, positive functions and characteristics, ability to live in relationships and experience interdependence and interconnectedness [40]. She saw her mentor striving to maintain her independence and remain living alone for as long as possible and in so doing, attempt to maintain her personal identity. The student also had the opportunity to gain awareness of the complexity of the caregiving family and the various lenses from which different family members see their world and express their views. The four themes that emerged from the observations and reflections of the medical student provide a window into the impact of this experience – spending time with an individual diagnosed with dementia – over the course of the academic year.

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The first theme, ‘the evolving nature of beliefs over time’, led to the potential for the student to achieve a greater tolerance for the changes that come with cognitive impairment such as repetitive behaviors. The student’s initial frustration and tendency to blame the patient for frustrating behaviors grew into increased understanding that the repetition was not motivated by the mentor, but was rather the result of the illness. As she recognized the behavior was a result of the disease and not intentional, she was able to respond with more tolerance and acceptance. She saw the person beyond their symptoms. This development of belief over time provided the student with a trajectory of her own experience of the person with dementia. She was able to see that the person was not in control of what was happening to them, in addition to recognizing their remaining strengths and ability to continue to live a quality life. The second theme – ‘awareness of the subjective response of the person with dementia’ gives recognition that the student became aware that the mentor had a sense of self and changing self – the objectivity assigned to symptoms was enhanced by the recognition of the person’s own response to the symptoms. The student’s increasing awareness fostered an empathic appreciation of the mentor. It is of course possible that the “awareness” of the subjectivity of the person with dementia is in part a projection of the student’s own feelings; however, the student’s capacity to imagine what the mentor might be feeling may foster a stronger connection to the person’s experience. Further investigation is required to determine the degree to which the student assigns his or her subjective experience to the mentor. The third theme, ‘curiosity regarding dementia symptoms’ is important as it facilitates a more nuanced understanding of the disease. Students may be taught about beginning, middle and end stage disease with associated symptoms; however, developing a relationship over time with her mentor helps her to recognize that the symptoms are not so clearly present or absent. The retention of particular aspects of memory and loss of other, leads to questions about the nature of the disease and the many clinical presentations. This recognition may help to sensitize the student to how her mentor processes and retains different pieces of information. The future work of this student as a doctor may be influenced by understanding that the retention and comprehension of information is not ‘all or

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nothing’. Finally ‘the student’s understanding of the family experience’ is essential in changing attitudes about the delivery of health care to individuals and families. Expansion of the lens from the individual with symptoms to the family caring for the individual and living with the impact on them is essential to comprehensive and effective care. The students are reminded that families are present beyond the doctor’s office and struggle with their own reactions. The student’s own experience (recognizing her own reactions to the mentor) helps in the case of realizing the response of a family member to irritating behaviors may have an underlying emotional response; that is a sadness to “losing” their parent. Again the enhanced empathy for family responses seems to evolve from the student’s awareness of her own response to the changes experienced in the mentor. The collected themes expressed by the student, illustrates the impact of creating a relationship with her mentor. The depersonalization of the individual with dementia is reduced by focusing on the person not the symptoms. Her continued curiosity about the symptoms may foster more careful assessment of memory and capacity and enhanced greater empathy for the individual and family. CONCLUSION The impact of dementia on our society is expected to be catastrophic unless researchers find better methods of treatment and prevention. Health care professionals must be knowledgeable about the illness, its course and its myriad effects on the individual, family and society. The implementation of experiential learning opportunities such as the Buddy Program have the potential for increasing knowledge and awareness of dementia, furthering an awareness of the disease impact on the individual and family and expanding the crucial role health care professionals play at all levels of practice, policy and research. The measure of success for educating health care providers about Alzheimer’s disease and related illnesses may not need to develop a workforce of practitioners whose sole focus is geriatrics or neurology, but rather to educate and broaden health care and social service providers about the intergenerational aspects of care and the importance of integrating aging and dementia in all practice areas. The

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experience detailed here of a young medical student getting to know a person living with dementia in a personal non-clinical way over time, resulted in a more holistic view of the person and family and a changed perception of dementia. Finally, the student chosen for this analysis reflects on her future as a physician following her experience in the Buddy Program: I have very little idea about what I want to do as a physician. This program has definitely not decided my future as a geriatrician however it has shown me a very interesting field where a doctor can have a significant impact on her patients. Even if I don’t go into geriatrics, I know I will be working with adults and will inevitably have patients who will be suffering from some sort of dementia, possibly AD. I think my experience with (my mentor) will be invaluable in helping to connect with these patients and empathize. If nothing else this time has shown me what it is like to live with a major disease and how much it affects all parts of living. This is generalizable outside of AD. It has also shown me the importance of an active and supportive family network. No one can face an illness alone and the level of support available can have a big impact on how a patient deals with a condition. Especially in AD when the patient can’t always remember the particulars of the disease, it is crucial to have someone else who can take down information and remember it for him or her. Overall, I think having my first true clinical experience be drawn from the more human side of medicine will help to color all of my experiences from now on. I hope that in the next few years I will not lose this perspective.

FINANCIAL DISCLOSURE This research was supported by Alzheimer’s Disease Core Center grant AG13854 from the National Institute on Aging to Northwestern University Feinberg School of Medicine and the Glen and Wendy Miller Family Foundation. CONFLICT OF INTEREST The author confirms that she has no conflict of interest to declare for this publication.

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Older Women: Current and Future Challenges, 2016, 20-2

SUBJECT INDEX A Abuse 20, 105, 110, 111, 112, 113, 115, 116, 120, 123, 126, 130, 136, 137, 139, 140, 141, 142, 143, 144, 145, 146, 147, 148, 150, 151, 152, 153, 154, 155, 156, 157, 158, 160, 162, 164, 165, 166, 167, 169, 170 domestic violence and elder 150, 153 financial 141, 150, 152 sexual 140, 144, 150, 151 verbal 157 Abuse alcohol 107, 115, 116, 129 Abuse by adult children and caretakers 160 Abused women 136, 137, 138, 139, 142, 143, 144, 145, 146, 147, 150, 152, 153, 154, 156, 158, 159, 160, 165, 166, 167, 168, 169, 170, 171 Abuse in later life 136, 142, 156, 157, 158, 160 Abuse of older women 139, 141, 145 Abuser 118, 141, 142, 145, 150, 152, 157, 159, 160, 164, 165 female substance 118 Abuse woman 151, 167 Adult clients 96 Adult protective services (APS) 136, 137, 138, 140, 144, 145, 146, 147, 151, 156, 169, 170 Adult protective service workers 137 Adults 34, 35, 39, 42, 44, 48, 49, 51, 53, 59, 60, 62, 66, 67, 72, 74, 75, 76, 78, 80, 81, 82, 83, 86, 90, 91, 92, 93, 94, 95, 96, 97, 98, 100, 101, 105, 106, 107, 108, 109, 110, 111, 112, 113, 114, 115, 124, 125,

126, 127, 128, 130, 138, 158, 176, 177, 178, 199, 202, 203, 218, 221, 227, 229, 241, 243, 244, 253, 254, 255, 265 mature 128, 199, 203 Adult son 19, 147 Advocacy 25, 139, 227, 243 Agency for healthcare research and quality (AHRQ) 72 Aging and dementia 254, 255, 264 Aging lesbians 226, 243, 244 Aging LGBTQ people 229 Aging LGBTQ population 229, 244 Aging of women 48 Aging populations 3, 15, 22, 244 Aging process 137, 182, 212, 227, 232, 236, 242 Aging women 93, 175 Alcohol 21, 105, 106, 107, 108, 109, 110, 111, 112, 113, 114, 115, 116, 117, 118, 119, 120, 121, 122, 123, 124, 125, 126, 128, 130, 241 abuse 105, 110, 111, 117, 119, 123, 126, 127, 129 use 107, 109, 110, 111, 112, 114, 117, 120, 123, 124, 125, 130 Altruism 214, 216 Alzheimer’s disease 33, 74, 217, 253, 254, 255, 264 American community survey (ACS) 4, 12, 199 American women raising grandchildren 17 Anger management 39, 40 APS workers 167, 168, 169 Arthritis 16, 36, 51, 52, 94, 119, 215, 238

Teresa Kilbane & Marcia Spira (Eds.) All rights reserved-© 2016 Bentham Science Publishers

Subject Index

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Awareness of sexual health care issues 97 B Biological parents 4, 6, 17, 25, 26 Buddy program 253, 256, 264, 265 C Cancer 51, 52, 94, 114 Care 4, 5, 11, 13, 14, 17, 18, 20, 21, 23, 24, 25, 26, 27, 32, 33, 34, 35, 36, 37, 38, 41, 43, 49, 51, 71, 72, 75, 78, 81, 96, 118, 124, 130, 138, 141, 142, 151, 159, 160, 183, 188, 204, 212, 220, 237, 238, 239, 242, 243, 244, 245, 253, 255, 264 Caregiver burden 36, 44, 200 Caregiver responsibilities of older women 35 Caregivers 3, 4, 6, 11, 13, 14, 15, 17, 18, 19, 21, 22, 24, 25, 26, 27, 32, 33, 34, 35, 36, 38, 39, 40, 41, 42, 43, 44, 51, 63, 140, 141, 147, 200, 217, 218, 220, 226, 237, 238 custodial 18 grandfather 4, 6, 14 primary 4, 6, 11, 13, 14, 33, 51 Caregiver stress 33, 35, 142, 143, 145, 162, 165, 166 Caregiving, pathways to 15 Caregiving experience 34, 35, 38 Caregiving grandmothers 10, 13, 16, 20, 21, 22 Caregiving groups 217 Caregiving relationships 16, 26, 42, 139



Caregiving roles 3, 4, 9, 10, 12, 14, 15, 16, 32, 40, 159 assumed full-time 16 Care plan, member of name of managed 204 Care planning 36, 37 Care recipients 35, 36, 200 Certified domestic violence professional (CDVP) 149, 167 Children 5, 10, 11, 14, 15, 17, 18, 20, 21, 22, 23, 24, 25, 26, 27, 33, 37, 64, 72, 95, 99, 117, 128, 137, 141, 145, 157, 158, 161, 170, 175, 188, 189, 208, 211, 212, 213, 216, 234, 235, 237 biological 234, 235 raising 22, 23 Child welfare 7, 21, 23, 25 Child welfare system 5, 14, 17, 22, 23, 24, 27 Chronic disease 79, 81, 119 Circumstances, personal 35 Civilian noninstitutionalized population 52 Cognitive impairments 35, 125, 159, 203, 205, 207, 208, 256, 263 Cohesion 214, 216, 218 Community resources 79, 129 Convenience samples 165, 200, 201 Current population survey 53, 54, 55, 56, 60, 199 D Defining abuse for women 140 Definition of elder abuse by domestic violence Workers 153



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Demographic factors 32, 33, 79, 82, 87 Depressive symptoms 10, 13, 16 Diabetes 36, 51, 52, 73, 79, 80, 81, 94 Diagnostic Interview Schedule (DIS) 125 Disabilities 16, 26, 34, 41, 51, 72, 77, 79, 207 Domestic violence 136, 137, 138, 139, 140, 141, 142, 143, 145, 146, 147, 149, 150, 151, 152, 153, 154, 155, 156, 159, 160, 162, 164, 165, 166, 168, 169, 170 definition of 150, 151 Domestic violence agencies 139, 143, 144, 147, 148, 160, 161, 162, 163 Domestic violence counselors 164 Domestic violence court 163 Domestic violence data sources 145 Domestic violence grown old 136, 142, 156, 157, 158, 159, 160 Domestic violence grown old and abuse in late Life 156 Domestic violence programs 136, 145, 146, 162 Domestic violence services (DVS) 137, 138, 139, 145, 146, 147, 153, 156, 166, 168, 169, 170 Domestic violence system 138, 162, 163, 171 Domestic violence victims 140, 142, 167 Domestic violence workers 136, 137, 145, 147, 149, 150, 153, 155, 156, 157, 160, 162, 163, 164, 165, 166, 167, 168 Drug abuse 106, 107, 109, 110, 112, 120

7HUHVD.LOEDQH 0DUFLD6SLUDLQJ

prescription 106, 110, 112, 120 DVS workers 167, 169 E Economic disparities 48, 236 Economic precariousness 48, 49, 62, 65 Educating healthcare systems 86 Elder abuse 136, 137, 138, 139, 140, 141, 142, 143, 144, 145, 147, 149, 150, 151, 152, 153, 154, 155, 156, 159, 160, 161, 164, 165, 166, 168, 171 biggest type of 159, 161 define 140, 149, 150, 152, 153 definition of 138, 140 jurisdiction of 152, 153 Elder abuse act 153, 155 Elder abuse case 152, 153, 155, 164 Elder abuse definitions 137, 141 Elder abuse investigators 136, 137, 140, 143, 145, 147, 148, 149, 151, 152, 153, 154, 156, 158, 159, 160, 161, 162, 163, 164, 165, 166, 167, 169 Elder abuse literature 142, 143 Elder abuse service system 165 Elder abuse system 138, 143 Elder abuse victims 139, 155 Eldercare 32, 33, 40 Elderly population 92, 106, 115, 117 Elderly respondents 199, 202 Elderly women 56, 77, 117, 118, 119, 124, 126 Elderly women of color 77 Emotional abuse 140, 144, 151 Ethnicity 16, 34, 35, 49, 52, 59, 72, 79, 81, 83, 84, 110, 148, 231, 240

Subject Index

2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Experience abuse 136, 143 Experiences 174, 176, 183, 185, 192, 213, 226, 227, 243 normative 174, 176 spiritual 183, 185, 192 unique 226, 227, 243 women’s 213 F Facilities 99, 38, 201, 202, 243, 244 skilled nursing 38, 201, 202 Factors 85, 114, 163, 164, 165, 123, 214, 216, 218, 221, 228, 239, 240 distinguishing 163, 164, 165 existential 214, 216 protective 114, 123, 228, 239, 240 socio-economic 85 therapeutic 214, 216, 218, 221 Families 10, 11, 13, 18, 20, 21, 22, 26, 35, 44, 54, 62, 63, 64, 99, 115, 117, 126, 129, 154, 158, 175, 187, 188, 189, 212, 233, 234, 235, 236, 237, 238, 245, 253, 256, 261, 264, 265 lesbian 235 Family caregiving 40, 43, 261, 262 Family experience 253, 260, 262, 264 Family members 6, 7, 13, 25, 32, 33, 41, 95, 116, 118, 137, 138, 141, 142, 143, 144, 145, 155, 230, 237, 262, 264 Financial assets 58, 59 Financial resources 9, 11, 16, 21, 115



G Gender differences 60, 61, 75, 83, 84, 85, 106, 178 Gerotranscendence 174, 176, 181, 182, 191 Grandmother caregivers 3, 6, 7, 11, 13, 15, 16, 17, 18, 19, 20, 22, 23, 24, 25, 26 Grandmothers 3, 4, 6, 10, 11, 13, 14, 15, 16, 17, 18, 20, 21, 22, 25 custodial 15, 17, 18, 20 non-caregiving 10 white 13 Grandparent caregivers 3, 4, 5, 6, 7, 9, 10, 14, 16, 20, 23, 24, 25, 51 population of 3, 23, 24 Grandparent caregiving 3, 4, 5, 6, 9, 10, 11, 16, 21, 22 Grandparent caregiving population 5, 23 Grandparenthood 7, 8, 9 Grandparent roles 3, 9 Grandparents 4, 5, 7, 8, 9, 10, 11, 12, 13, 16, 17, 20, 21, 23, 24, 27, 51 co-resident 4, 8, 51 custodial 12, 13, 17 non-caregiving 10 Grandparents raising grandchildren 4, 9, 10, 21, 28 Groups of older women 3, 115 H Health behaviors 73



2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Healthcare 21, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 82, 83, 84, 85, 86, 87, 115, 169, 253, 255, 264 disparities in 71, 87 regular 78 Healthcare access factors 78 Healthcare costs 78, 97 Healthcare delivery 82, 83, 84, 85 Healthcare disparities 71, 72, 78, 80, 82, 83, 84, 86, 97 addressing 82 reducing 83, 86 Healthcare field 97 Health care of older women 77 Healthcare outcomes 71, 72, 83 Healthcare plan 79, 80 Healthcare professionals 35, 36, 90, 94, 97, 98, 101, 126, 129, 255, 264 Healthcare providers 73, 84, 92, 95, 101, 231, 235, 239, 242 Healthcare services 72, 74, 237 necessary 237 Health care settings 239, 243 Healthcare system 73, 105 Health care systems 74, 78, 235, 236, 238 Healthcare system structure, current 75 Health care workforce 253 Health disparities 71, 81, 239, 240 documented women’s 81 Health insurance 73, 76, 80, 86 Health issues 96, 97, 118, 119 mental 118, 119 sexual 96, 97 Health problems 16, 44, 76, 77, 207, 240, 241 mental 207, 240

7HUHVD.LOEDQH 0DUFLD6SLUDLQJ

Health professionals, mental 96, 174, 176, 191, 193 Health services 84, 85, 87, 106, 237 mental 106, 237 Heart disease 51, 52, 83, 94, 114 High frequency words 203, 204 Hispanics 49, 52, 54, 72, 107, 110 Hispanic women 51, 54, 56, 57, 59, 77, 78, 110, 213 Homophobia 235, 236, 243, 244 Hypertension 16, 51, 52, 79, 83 I Illicit drug use 107, 108, 110, 126 Income 33, 53, 54, 55, 56, 57, 58, 59, 61, 62, 73, 74, 77, 79, 80, 82, 85, 115, 118, 200, 212, 213 annual 57, 58, 59, 61, 74 higher 54, 115 household 79, 82 median 54, 57, 213 received 57, 59 sources of 53, 55 Income distribution 53, 54, 55 Income levels 48, 78, 80, 148 Income source 55, 56, 62, 213 Individuals 21, 27, 33, 42, 49, 50, 53, 57, 58, 72, 79, 84, 87, 115, 155, 178, 182, 187, 219, 220, 237, 246, 264 homeless 53 Interpersonal relationships 40, 106 Intervention efficacy 38, 39, 40 Intimate partners 136, 137, 138, 141, 142, 143, 144, 145, 150, 155, 160, 169

Subject Index

2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Intimate partner violence (IPV) 136, 137, 138, 139, 140, 141, 143, 144, 145, 147, 155, 160, 161, 166, 168, 169, 170, 171 IPV of older women 170 J Jurisdiction 152, 159, 165, 167 K Kinship caregivers 6, 11, 18, 24 L Leadership conference of women religious (LCWR) 185, 186 Legal parents 19, 20 Lesbian clients 244, 245 Lesbian community 230, 233, 234, 238, 240, 241, 245, 246 Lesbian mothers 234, 235 Lesbians 42, 116, 226, 227, 228, 230, 231, 232, 233, 234, 235, 236, 237, 238, 239, 240, 241, 242, 243, 244, 245, 246 lifetime 234 Lesbian women use 116 Levels 9, 10, 23, 35, 38, 39, 58, 73, 78, 79, 80, 83, 84, 85, 86, 87, 90, 91, 92, 100, 101, 149, 169, 176, 187, 227, 246, 260, 264, 265 macro 83, 85, 86, 87 personal 78, 169 LGBTQ 227, 234, 236, 239, 243, 245 LGBTQ adults 227, 229, 236



LGBTQ community 227, 228, 229, 230, 232, 233, 234, 236, 238, 241, 246 LGBTQ people 227, 229, 235, 243, 244, 245 LGBTQ populations 228, 229, 239, 240, 243 LGBTQ women 229, 232 Life 7, 8, 15, 44, 49, 53, 55, 60, 62, 65, 66, 83, 87, 90, 94, 97, 98, 115, 116, 128, 136, 137, 142, 143, 145, 157, 158, 165, 167, 169, 171, 174, 175, 177, 178, 179, 180, 181, 182, 185, 186, 187, 188, 189, 190, 191, 192, 212, 213, 214, 216, 218, 219, 220, 230, 231, 232, 234, 241, 242, 244, 258 religious 178 Life expectancy 74 Life experiences, woman’s 129 Life meaning 181, 220 Life partners 179, 237 Lifespan 115, 139, 226, 228 Life stressors 118, 119, 241 Lifestyle changes 115, 220 Longitudinal studies of aging (LSOAs) 199 Loss 5, 21, 77, 94, 98, 99, 105, 106, 112, 113, 114, 115, 117, 118, 119, 120, 126, 179, 190, 214, 218, 220, 238, 259, 260, 263 memory 112, 114, 120, 126, 259, 260 M Managed care plan 204 Marriage equality 233, 234



2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Measurement error 198, 199, 203, 204, 205, 208 Medical students 253, 254, 255, 256, 259, 262 female 253, 254 Medications 74, 76, 81, 110, 112, 113, 114, 120, 121, 126, 155 prescription 74, 110, 112, 113, 114, 120 Mental health 14, 15, 34, 106, 119, 126, 130, 145, 188, 218, 220, 226, 227, 228, 233, 236, 238, 239, 240, 241, 244, 245 Mentor’s daughter 261 Metropolitan areas 41, 72, 148, 165 Micro level factors 84, 85 Minnesota network on abuse in later life 169 Models, relational 127, 128 Moderate drinking 109, 111 Motivation 15, 93, 166 Museum 256, 260 N National Alzheimer’s project act (NAPA) 255 National center on elder abuse (NCEA) 140, 141, 146 National clearinghouse on abuse in later life (NCALL) 168 National healthcare disparities report (NHDR) 72 National health interview survey 109, 199, 205 National institute on alcohol abuse and alcoholism (NIAAA) 111

7HUHVD.LOEDQH 0DUFLD6SLUDLQJ

National survey 33, 107, 112 National survey on drug use and health (NSDUH) 107, 108, 109, 112 Non-caregiving peers 7, 9, 16 Non-LGBTQ women 232, 234 Non-medical use 112, 113 Nursing homes 32, 117, 152, 202, 245 O Office occupations 60, 61 Office on violence against women (OVAW) 141, 168 Office on women’s health (OWH) 75 Older Adults 108, 109 Older caregivers, propensity of 32, 33 Older women and adult daughters 32 Oppression 227, 228, 240 P Parenting stress 17 Passive neglect 140, 144, 151 Peers, non-caregiving 7, 9, 16 Perpetrators and types of abuse and neglect 154, 156 Personal care 205, 256 Personal responsibility and work opportunity reconciliation act (PRWORA) 64 Person’s abilities 254 Person’s health 82, 242 Perspectives, total survey error 198, 208 Physical abuse 119, 140, 141, 144, 151, 157, 159 Physical health 10, 14, 15, 34, 165

Subject Index

2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Physiological changes 79, 101, 105, 113 Policy recommendations 65, 66, 67 Policy resource center 27 Population 3, 4, 5, 6, 12, 15, 22, 23, 24, 25, 26, 34, 43, 49, 52, 53, 54, 55, 56, 60, 61, 71, 72, 73, 74, 75, 77, 78, 81, 83, 84, 87, 90, 92, 96, 97, 105, 106, 110, 115, 116, 117, 119, 120, 124, 127, 128, 129, 130, 139, 144, 145, 148, 166, 168, 169, 176, 177, 185, 198, 199, 200, 201, 202, 203, 205, 208, 209, 220, 226, 227, 228, 229, 230, 232, 236, 238, 239, 240, 241, 242, 243, 244, 246, 253, 254, 255 adult 74, 77, 78, 90, 96, 97, 255 general 34, 75, 120, 199, 238, 240, 241 lesbian 116, 226, 240 mature 198, 199, 202 rare 200 target 139, 166, 200, 201, 202, 203, 209 younger 128 Population estimates 198, 199, 201 Population groups 71, 73, 74, 87, 200 Poverty 18, 42, 49, 53, 54, 58, 62, 65, 185, 212, 213, 236, 237, 240 asset 58 Poverty level 54, 58 Poverty rates 53, 54, 65, 212, 213 highest 213 Power 19, 79, 86, 139, 145, 150, 152, 183, 184 Power and control 141, 142, 143, 150, 152, 154, 156, 165, 166



dynamics of 142, 150, 152, 154, 156, 165, 166 Practice implications 21, 32, 33, 82 Pregnancy, non-LGBTQ women experience 234 Prescription drugs 110, 113, 114, 120 Prevalence rates 143 Primary care physicians 99, 119, 120, 126, 130, 255 Problems 34, 63, 83, 86, 92, 95, 96, 97, 105, 116, 119, 126, 137, 182, 189, 205, 206, 212 sexual 95, 96, 97 Program component 39, 40 Protection, order of 163, 164 Psychoeducation 217, 218, 220, 221 Putting women’s healthcare disparities 86 Q Quality of care 71, 75, 204, 255 R Recommended care 82 Reference population 52 Relationship counseling 245 Relationships 15, 17, 79, 98, 99, 118, 128, 141, 143, 150, 151, 157, 158, 159, 164, 165, 166, 177, 178, 179, 182, 186, 211, 214, 217, 219, 226, 228, 231, 233, 237, 241, 244, 257, 262, 264 lesbian 233, 237 new 143

117, 152, 175, 213, 232, 263,



2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

social 98, 177, 213, 219 Research methodology 198 Resilience 226, 227, 229, 239, 240, 245, 246 Respondent driven sampling (RDS) 200, 201 Responsibilities 4, 8, 9, 10, 12, 13, 16, 26, 35, 37, 40, 41, 51, 65, 65, 111, 127, 140, 155, 167, 168, 170, 187, 217, 261 caretaking 65, 66, 217 primary 4, 12, 13, 16, 51 Retirement communities 117, 118 Risk 3, 14, 16, 26, 33, 34, 74, 92, 106, 112, 113, 114, 116, 117, 118, 119, 120, 121, 140, 209, 214, 228, 239, 240, 242, 246 higher 33, 34, 106, 113, 118 Risk factors 33, 106, 113, 114, 115, 116, 117, 118, 119, 227, 239, 241 Role 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 21, 22, 35, 36, 43, 44, 62, 63, 71, 79, 84, 93, 100, 111, 128, 129, 139, 147, 162, 165, 178, 180, 181, 187, 218, 230, 237, 262 parental 9 women’s 62, 63 Role changes 117, 118, 119 Role health care professionals 264 S Safety planning 137, 138, 139, 143, 146 Same-sex couples 229, 233, 236 Sample surveys 198, 199 Sampling frame 148, 201 Scale studies 5, 6

7HUHVD.LOEDQH 0DUFLD6SLUDLQJ

Service networks 145, 146 Service occupations 60, 61 Service providers 26, 28, 145 Service provision 228, 239, 243, 244 Services 17, 23, 24, 25, 26, 27, 37, 38, 39, 40, 41, 42, 43, 44, 79, 80, 84, 130, 136, 137, 138, 139, 143, 144, 145, 146, 147, 148, 149, 161, 163, 164, 165, 167, 229, 236, 239, 243, 244 adult protective 136, 137, 138, 145, 146 direct 149, 167 women-adult protective 136 Sexual activity 90, 91, 92, 94, 95, 232 Sexual behaviors 90, 91, 95 Sexual expression 91, 93, 100, 101, 245 Sexual health 90, 92, 95, 96, 97, 101, 241, 242 adult 92, 101 discussing 96 Sexuality 90, 91, 92, 93, 94, 95, 96, 97, 98, 101, 226, 228, 229, 232, 235, 242, 244 adult 96, 97, 101, 242 Sexually transmitted infections (STI) 92, 96, 97, 98, 242, 243, 246 Sexual minority populations 239, 240 Sexual orientation 116, 119, 229, 230, 240, 244, 245 Sexual relationships 91, 94, 231 Sexual risk behaviors 239 Social determinants 75, 81, 82 Social media 221, 222 Social security 37, 55, 56, 57, 60, 62, 64, 66, 80, 85, 115, 213 Social Security benefits 57, 64, 81, 212

Subject Index

2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

Social support 15, 16, 17, 117, 214, 221, 227 Social well-being 3, 73 Social workers 3, 10, 20, 21, 22, 26, 32, 33, 36, 37, 38, 40, 41, 43, 44, 71, 86, 87, 98, 99, 191, 226, 244, 262 clinical 98, 99 Society 49, 62, 77, 85, 92, 93, 101, 116, 176, 177, 180, 182, 211, 212, 227, 254, 264 Socio-economic status 71, 73, 74, 75, 78, 79 Spirituality 174, 175, 176, 177, 178, 179, 180, 181, 183, 186, 189, 190, 191, 192, 219, 220, 230 role of 174, 176 women’s 180, 191, 192 Spirituality and religion 174, 176, 178 Spiritual struggle 174, 176, 179, 180, 193 State adult protective services 144 State child welfare systems 23 Status, legal 18, 26 Substance abuse 11, 14, 106, 111 defining 106, 111 parental 11, 14 Substance abuse and mental health services administration (SAMHSA) 110, 116, 120, 123, 125, 129 Substance abuse defined 111, 112 Substance abuse issues 118, 129 Substance abuse treatment 106, 115 Supplemental security income (SSI) 18, 55, 57, 62, 65, 67 Support system members 123 Surrounding alcohol abuse 105, 126



Survey design decisions 199, 200, 207 Survey of income and program participation (SIPP) 64, 199 Survey of state adult protective services 144 Survey research 198, 199 Surveys, telephone 202 T Telephone support groups (TSG) 39, 40 Temporary assistance to needy families (TANF) 18, 64, 65 Theory 176, 180, 182, 183, 193, 239, 240 minority stress 239, 240 narrative 176, 180, 182, 183, 193 Total survey error 199 Training 96, 124, 137, 145, 147, 149, 150, 162, 167, 168, 169, 170, 253, 255 collaborative 167, 168 Training for elder abuse investigators and domestic violence workers 167 Treatment entry rates 106 U Unemployment insurance (UI) 63, 64 V Violence workers, elder abuse investigators 136, 137, 147, 168



2OGHU:RPHQ&XUUHQWDQG)XWXUH&KDOOHQJHV

W Woman’s ability 155, 156, 165 Women 51, 53, 56, 57, 59, 64, 74, 77, 79, 80, 82, 83, 86, 91, 110, 106, 116, 117, 188, 192, 193, 228, 231, 234, 238, 242, 243 adult 91, 106 bisexual 228, 238 black 82, 83, 188 help 192, 193 heterosexual 117, 231, 234 lesbian 116, 242 poor 53, 64 queer 228, 243 unemployed 64 white 51, 56, 57, 59, 74, 77, 79, 80, 83, 86, 110

7HUHVD.LOEDQH 0DUFLD6SLUDLQJ

Women caregivers 32, 33, 38, 39, 40, 41, 42, 43, 44 minority 38 Women for sobriety (WFS) 127 Women of color health data book 77 Women population 117 Women’s health 83 Women’s policy research 63, 64 Women’s policy research study documents gender disparity 64 Women’s position 62 Working relationship, good 162, 163 World health organization 73

32 Older Women: Current and Future Challenges

Coupet and Cryer-Coupet