The Elderly Caregiver: Caring for Adults with Developmental Disabilities

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Edited by: Karen A. Roberto

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    Foreword

    The progressively increasing population of older Americans with developmental disabilities is mirrored by the aging of the overall U.S. population. Given that historically little attention has been given to the aging of persons with mental retardation and other developmental disabilities, this book, which addresses caregiver issues, should be a welcome addition to the literature and a ready handbook for workers in the fields of both gerontology and developmental disabilities.

    Over the past 10 years there has been a significant shift from an emphasis on early childhood concerns for persons with developmental disabilities to one on life-span issues. Certainly the trends observed within the United States that show a marked movement from institutional to family and community living systems auger well for the lifestyle and quality of old age among persons with developmental disabilities. In many communities, service agencies have begun to look not only at housing supports but also at a range of supportive retirement environments and options and at accessible and affordable health-care services for older adults with developmental disabilities. Included among these are supports to caregivers in a variety of situations.

    Paramount among caregiver concerns are issues related to the aging in place and provision of options for making the best use of one's day. Although the pathologies of old age take a disproportionate share of the attention of caregivers, the wellness and enlightenment of Third Age activities require substantial attention as well. Many caregivers are finding themselves in the situation of accompanying older persons to the very same retirement activities and health-care providers of which they themselves would take advantage. Many caregivers also are finding that the effects of aging can be mitigated by careful planning, foresight, and compensatory activities. The types of analyses presented in this text should enable the range of caregivers, providers, family members, and professionals involved with older adults with developmental disabilities to address current needs and to foresee and anticipate the changing needs of the senior generations to come.

    This text addresses the gamut of concerns and challenges that are found in our field today. It provides an excellent synopsis of the current issues and trends and explores with depth the areas that are becoming the challenges of a new generation of older adults. Research has taught us that for the most part people age in general terms and that only in special situations does lifelong disability present a different course for the aging process. Certainly one of these differences, and one that is most noticeable, is the effect of the genetic structure of Down syndrome. Aptly, work in this text charts the nature of this condition and its interaction with the aging process. Unfortunately the effects of Down syndrome are such that many persons with Down syndrome not only experience premature aging but also may begin to show the signs of Alzheimer's disease. Thus the consideration of Down syndrome and the interaction with the aging process and its potential pathologies is a worthy aspect of this text.

    As a text on this subject, The Elderly Caregiver: Caring for Adults With Developmental Disabilities not only will enlighten with its contemporary knowledge but also will serve as a milestone to the work already done and yet to be done in this unfolding field.

    MatthewP.Janicki, Ph.D.Director for Aging Services New York State Office of Mental Retardation and Developmental Disabilities Albany, New York

    Preface

    The “aging” of the United States encompasses every segment of our population, including individuals with developmental disabilities. The number of persons with developmental disabilities living into their later years has shown a steady increase over the past several years. Their increase in life expectancy plus a strong support for community integration presents new challenges for older families providing in-home care for their relatives with disabilities.

    For past generations, the caregiving situation tended to end by the time caregivers reached their middle years. Now, for many parents, providing in-home care for a son or daughter with a developmental disability is a lifelong task. As both parents and children pass through the life cycle, they must confront changes in their lives as a result of the aging process (e.g., health limitations, exiting the workforce, loss of a loved one). When parents, and particularly mothers, are not able or available to provide care, a sibling usually takes over the responsibility of providing day-to-day care. Entrance into this caregiving role often is assumed, and places sibling caregivers in conflict with their family and career responsibilities. Although providing care can be burdensome, caregivers are reluctant to turn to individuals outside the immediate family or the formal service system for assistance until a crisis occurs.

    This book brings together the empirical work of researchers in the fields of both gerontology and developmental disabilities to provide insight into the physical, psychological, and social needs of this growing segment of our population. The book is divided into four sections. The first section provides a review of the caregiving literature as it pertains to this special population of caregivers. The intent of this chapter is to provide a basis from which to understand and further explore issues confronting caregivers of aging adults with developmental disabilities.

    The second section is comprised of five chapters that focus on the issues and concerns facing elderly caregivers. Heller examines family perceptions of caregiver burden using both qualitative and quantitative data to describe the ways older family caregivers cope with their caregiving responsibilities and plan for their relative's future. Roberto describes changes in the type of caregiving activities provided by family members as both they and their care receivers have aged. Brubaker and Brubaker examine the financial, residential, social, and emotional concerns of elderly parents caring for adult children with mental retardation. The final two chapters in this section focus on caregivers of aging adults with Down syndrome. Hawkins, Eklund, and Martz identify age-related changes experienced by adults with Down syndrome that influence the need for care and provide an overview of assessment strategies that can be used by older caregivers to identify these changes. Noelker and Somple present a clinical view of elderly caregivers of aging adults with Down syndrome and Alzheimer's disease. Through the use of case studies, they describe the process for assessing Alzheimer's disease in adults with Down syndrome and the problems a dual diagnosis presents for aging family caregivers.

    The third section of the book focuses on interactions between older caregivers and the service community. It consists of four chapters. Wood describes social and psychological issues facing older families as they plan for the transfer of care. She discusses the types of plans family caregivers have made and the preparation of aging individuals with developmental disabilities to deal with the death of their primary family caregivers. Lehmann and Roberto examine the current and future service needs of individuals with developmental disabilities living with elderly relatives. They discuss the need for a planning process and the design of mechanisms to facilitate the use of formal services. The last two chapters in this section focus on older families and formal case management. Rinck and Calkins describe a statewide survey of the older parents’ perceptions of the case management system. Special attention is given to urban/rural differences in the case management process and the delivery of services. Smith and Tobin explore case managers’ perceptions of practice with older parents of developmentally disabled adults. They discuss older parents’ involvement in case-related activities and special services needed by older parents.

    In the final section of the book, Ansello and Roberto summarize the practice concepts and directives for future research presented by the contributing authors. They conclude their chapter with a discussion of the research as a stepping stone for policy development.

    Acknowledgments

    The idea for this book emerged as a result of a meeting of the Aging and Developmental Disabilities Formal Interest Group of the Gerontological Society of America in 1989. During our session, individuals from the fields of both gerontology and developmental disabilities formally and informally shared reports of their current work. Afterward, I mentioned to a colleague that much of the work focusing on aging caregivers of adults with developmental disabilities was scattered across a variety of journals and various project reports and how it would be nice if all of this work were incorporated into one volume. She looked at me and said, “So do it!” With that, the challenges of developing a clear focus for the book, getting commitments from a variety of talented (and busy) researchers, and finding a publisher began.

    Now that the book is complete, I would like to take this opportunity to thank the many individuals who directly and indirectly assisted in its development. First, I am extremely grateful to each of the contributing authors for their willingness to prepare and revise their chapters. I appreciate all the time and energy they committed to this project. Next, I am appreciative of the support I have received from Sage, and particularly from Christine Smedley. Her continual encouragement and enthusiasm helped keep some of the frustrations of editing a book in perspective. Third, I am grateful for the help of my graduate students, Mary Jesukiewicz, Candi Johnson, Rene Paukstis, and David Sheehan who meticulously completed tasks associated with proofreading and referencing. I also appreciate the help with the preliminary copyediting I received from Becky Edgerton. Finally, I want to express my sincere appreciation to my husband, Steven Sheetz, for his continual support and encouragement throughout this project and our life together.

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    About the Contributors

    Edward F. Ansello, Ph.D., is Director of the Virginia Center on Aging, Medical College of Virginia, at the Virginia Commonwealth University in Richmond. His gerontological focuses include elder caregiving; pre-retirement education; disabilities and aging; geropharmacy; coalition building; and the humanities, media, and aging. He is the author of 12 books, monographs, special issues, and book chapters, and 36 published articles, and he has made over 400 presentations before professional and civic groups nationally and internationally.

    Ellie Brubaker, M.S.W., Ph.D., is Associate Professor in the Department of Sociology and Anthropology at Miami University, Oxford, Ohio. She has written several journal articles and book chapters on the topic of family care in the later years. She is also the author of the book Working With the Elderly: A Social System's Approach.

    Timothy H. Brubaker, Ph.D., is Professor and Director of the Family and Child Studies Center at Miami University, Oxford, Ohio. He has written two books and edited four other volumes on family life in the later years. In addition, he has published several journal articles and numerous book chapters focusing on caregiving issues facing older families.

    Carl Calkins, Ph.D., is Director of the University of Missouri-Kansas City Institute for Human Development, a university affiliated program. He has served as principal investigator on a number of federal grants in the area of aging and developmental disabilities, including both demonstration and training grants. He has presented to national audiences and published on the topic of aging and developmental disabilities.

    Susan J. Eklund, Ph.D., is Professor of Counseling and Educational Psychology, Byron Root Professor on Aging, and Director of the Indiana University Center on Aging and Aged. Her areas of professional expertise include adult development and aging, life-span development, school psychology, and the aging/aged developmentally disabled. She has authored more than 40 publications and is active in both aging and educational professional associations.

    Barbara A. Hawkins, Re.D., is Associate Professor of Health, Physical Education, and Recreation and Research Coordinator of the Program on Aging and Developmental Disabilities at the Indiana University Institute for the Study of Developmental Disabilities. She is principal investigator of a training grant in the area of aging and developmental disabilities from the U.S. Department of Health and Human Services (U.S. DHHS), has completed a curriculum development grant from the Administration on Aging (U.S. DHHS), and is the lead principal investigator for a study of bio-psycho-social aspects of aging-related decline in persons with mental retardation and Down syndrome. She has authored more than 35 publications and delivered more than 50 presentations on state, national, and international levels.

    Tamar Heller, Ph.D., is Associate Professor of Community Health Services and Psychology at the University of Illinois at Chicago and Coordinator of the Family Studies and Service Program at the Illinois University Affiliated Program in Developmental Disabilities. She has been the principal investigator of numerous federal and state grants including the Residential Transition Project and the Later Life Planning Project of the Rehabilitation Research and Training Center Consortium on Aging and Developmental Disabilities. She has conducted research and published widely on residential transition and future planning issues for persons with disabilities, elderly persons, and family caregivers.

    Jean P. Lehmann, Ph.D., is Assistant Professor in the School of Occupational and Educational Studies at Colorado State University. Her interest in families of persons with disabilities has evolved from experiences working with these families as a community case manager for persons with disabilities and as a secondary special education teacher. Her most recent research examines factors associated with mothers’ expectations for their adolescent children.

    B. L. Martz, M.D., is Professor Emeritus of Medicine at the Indiana University School of Medicine and former Director of the Indiana University Center on Aging and Aged. He continues private practice as a geriatrician with the Marion County General Hospital and the Indiana Masonic Home Hospital. He is co-principal investigator with Susan Eklund and Barbara Hawkins on a longitudinal research project with aging adults who have developmental disabilities. He is an active member of more than 15 professional organizations and has authored more than 50 publications in a variety of areas including cardiology and geriatric medicine.

    Elizabeth A. Noelker, R.N.C., M.S.N., is a Gerontological Clinical Nurse Specialist at the University Foley Elder Health Center of University Hospitals of Cleveland. She also works at the University Alzheimer's Center as an educator and is on the clinical faculty at Frances Payne Bolton School of Nursing at Case Western Reserve University. She is certified by the American Nurses Association in gerontological nursing.

    Christine Rinck, Ph.D., is Director of Research at the University of Missouri-Kansas City Institute for Human Development. She was Research Associate on an AoA/ADD demonstration grant and was a coauthor of the Training Guide for Aging Specialists. She has conducted a number of needs assessments for the State of Missouri and various regions on the prevalence and needs of older persons with developmental disabilities. She is the author of Aging and Developmental Disabilities in Rural America and co-editor of the publication Dialogue on Drugs, Behavior, and Developmental Disabilities.

    Karen A. Roberto, Ph.D., is Professor and Coordinator of the Gerontology Program at the University of Northern Colorado. Her research focuses on family and friend relationships in later life and the influence of chronic illness on the lives of older women. Her work has been published in a variety of scholarly journals including The Journal of Gerontology: Psychological Sciences, The Journal of Women and Aging, The Journal of Applied Gerontology, The Gerontologist, and The Journal of Gerontological Social Work.

    Gregory C. Smith, Ed.D., is Assistant Professor in the Department of Human Development at the University of Maryland, College Park. His research interests are in the field of applied gerontology, including interventions for family caregivers of the frail elderly, psychosocial environments within geriatric residences, and aging among developmentally disabled adults and their parents. He has published numerous articles in such scholarly journals as The Gerontologist, Psychology and Aging, Clinical Gerontologist, Educational Gerontology, and The Journal of Gerontological Social Work.

    Lauren C. Somple, M.S.W., L.I.S.W., A.C.S.W., is employed as a Clinical Social Worker at University Foley Elder Health Center, University Hospitals of Cleveland. She received her master's degree in Social Work from the University of Pittsburgh in 1982 and Certificate in Gerontology from Case Western Reserve University in 1984. She has served as an instructor and consultant for the Western Reserve Geriatric Education Center and Mandel School of Applied Social Sciences.

    Sheldon S. Tobin, Ph.D., is Professor in the School of Social Welfare at the Rockefeller College of Public Affairs and Policy of the University at Albany, State University of New York. He also is a Professor in the School of Public Health, the Department of Psychology, and an Adjunct Professor of Medicine at Albany College. Among his nearly 100 publications, focused on psychological aspects of aging and services for the elderly, are the following books: Last Home for the Aged and The Experience of Aging (both with M. A. Leibman), Effective Social Services for the Elderly (with S. Davidson and A. Sack), Current Gerontology: Long Term Care (editor), Enabling the Elderly: Religious Institutions Within the Community Service System (with J. W. Ellor and S. Anderson-Ray), and Health in Aging: Sociological Issues and Policy Directions (co-edited with R. A. Ward).

    Joan B. Wood, Ph.D., is Associate Professor of Gerontology and Psychology and Associate Director of the Virginia Geriatric Education Center at Virginia Commonwealth University (VCU). She also serves as Gerontology Discipline Coordinator for the Virginia Institute for Developmental Disabilities, the university-affiliated program for develpmental disabilities in Virginia, at VCU. She was Director of the first statewide project on aging and developmental disabilities in Virginia, at VCU, and she was Codirector of a project funded by the Administration on Aging (1990–1992) on policy, training, and service related to aging and developmental disabilities. Her primary research interest is family caregiving for older adults with disabilities.


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