Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
This study investigated quality of life of family caregivers of persons with Alzheimer's disease (AD). Caregiving is a strenuous and challenging job. Family caregivers experience poor quality of life after they take the role of caregiving which might be related to depression. Purpose of this study was to find if caregiving duration and depression has any role in affecting family caregivers' emotional, physical, and general health. Data for this study were collected through electronic and mailed survey methods. The questionnaires completed by subjects: Medical Outcomes Study Short Form 36 (MOS-36) and Center for Epidemiologic Studies Depression Scale (CES-D). Descriptive statistics including mean, standard deviation, minimum and maximum values were calculated on demographics. Correlation statistics were calculated for emotional health, physical health, general health, depression and caregiving duration in the target population to find if there is presence or absence of any significant relationship that affects quality of life of family caregivers of persons with AD. Data were collected in Minnesota through Alzheimer's Association Minnesota-North Dakota Chapter, Lyngblomsten Care Center, St. Paul, MN, Lyngblomsten Home and Community Based Services, St. Paul, MN and Ecumen Seasons at Apple Valley, MN. The agencies were contacted in-person for recruitment of subjects. Total of 207 family caregivers responded where 25 were males and 182 females. Statistical analyses were computed which resulted in four statistically significant findings: emotional and physical health was significantly related to each other; emotional and physical health was significantly related to depression; general health was significantly related to depression; and caregiving duration was significantly related to depression. Study presented new information on family caregivers' quality of life. The conclusion drawn from the current study may help future researchers to investigate improvement in quality of life of family caregivers with AD. It is hoped that the data will help health professionals and support groups to plan and develop better programs to improve quality of life of family caregivers for persons with Alzheimer's disease.
As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others. Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well. By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.
Published in cooperation with the Center for Practice Innovations, Mandel School of Applied Social Sciences, Case Western Reserve University Increased life expectancy, the deinstitutionalization of persons with mental illness, the rise of home health care, and advances in medical technology have resulted in greater numbers of dependent people requiring care by family members. The frail elderly, the chronically mentally ill, and the physically disabled are examples of such groups who now receive their daily care in the community. How do families accept the burden of this care? What are the physical and emotional demands of such caregiving? Are the families prepared to assume this role? Family Caregiving Across the Lifespan considers the broad spectrum of chronic illnesses that necessitate family caregiving throughout the lifespan and expands the caregiving paradigm by including in its focus both members of the caregiving dyad and significant non-family caregivers. It also explores the social context in which care is provided--an entire section of the volume is devoted to discussions of the interface between informal and formal caregivers and society at large. Among the other subjects this volume addresses are the negative consequences of family caregiving, the value of providing support to caregivers, and caregivers of persons living with AIDS. Family Caregiving Across the Lifespan is important reading for those in social work, nursing, family medicine, and clinical psychology. "Family Caregiving Across the Lifespan represents a significant milestone in the continuing maturation of this vital area of long-term care. The title is an understatement of the authors′ accomplishments. . . .Rather than offering narrow boxes or labels, the book invites the reader to join in a broadened perspective on caregiving so that it can more fully reflect the richness of the lives of all involved. . . .For those who encounter Family Caregiving Across the Lifespan as part of their continuing study of caregiving, the book provides the integrating milestone of caregiving literature." --Journal of Case Management "This volume is a useful compendium of articles on family caregiving. The fourteen chapters in this volume address many important topics in family caregiving. One of the book′s major contributions is its clarification that family caregiving to frail or chronically ill people has no age limitation, although there are unique issues at different points in the development of individuals and families. The book has exceptional merit. It expands our understanding of family caregiving, provides important ideas for future research, offers research findings that enhance our understanding of family care, and presents a very useful review of the literature. This book would be a beneficial addition to the library of all researchers in the area of caregiving. They will discover worthwhile conceptualizations and gain new insights that can inform their research. Practitioners should also benefit from this collection. The chapters addressing interaction between forma land informal caregivers should give practitioners a deeper understanding of how to be more effective in dealing with informal caregivers and care recipients." -Ageing & Society "One paper [in this volume] deserves particular notice because it attempts to do what many of the authors feel is most critical in caregiving research but also most difficult, namely, to analyze the effectiveness of caregiving, the effect of provision of care on elder health outcomes. This is an important and original conceptualization of the problem..." -Steven M. Albert, Contemporary Gerontology "This book is both unique and valuable because it embraces Brody′s observation that family caregiving is not limited to a specific segment of the life span. Moreover, the book is not limited to filial caregiving, but entertains an impressive variety of contexts of family caregiving. . . . This book will be a valuable text in graduate-level courses." --Journal of Marriage and the Family
Assisting someone with Alzheimer’s disease or another illness that causes dementia is incredibly demanding and stressful for the family. Like many disabling conditions, Alzheimer’s disease leads to difficulty or inability to carry out common activities of daily life, and so family members take over a variety of tasks ranging from managing the person’s finances to helping with intimate activities such as bathing and dressing. Key coverage in Caregiving for Alzheimer’s Disease and Related Disorders includes: Early diagnosis and family dynamics Emotional needs of caregivers Developmentally appropriate long-term care for people with Alzheimer’s Family caregivers as members of the Alzheimer’s treatment Team Legal and ethical issues for caregivers Faith and spirituality The economics of caring for individuals with Alzheimer’s disease Cultural, racial, ethnic, and socioeconomic issues of minority caregivers Advances in Alzheimer’s disease research Caregiving for Alzheimer’s Disease and Related Disorders offers a wealth of insights and ideas for researchers, practitioners, and graduate students across the caregiving fields, including psychology, social work, public health, geriatrics and gerontology, and medicine as well as public and education policy makers.
This comprehensive resource offers a detailed framework for fostering resilience in families caring for their older members. Its aim is to improve the quality of life for both the caregivers themselves as much as for those they support. Robust interventions are presented to guide family members through chronic and acute challenges in areas such as emotional health, physical comfort, financial aspects of care, dealing with health systems, and adjusting to transition. Examples, models, interviews, and an extended case study identify core concerns of caregiving families and avenues for nurturing positive adaptation. Throughout, contributors provide practical applications for therapists and other service providers in diverse disciplines, and for advancing family resilience as a field. Included in the coverage: Therapeutic interventions for caregiving families. Facilitating older adults’ resilience through meeting nutritional needs. Improving ergonomics for the safety, comfort, and health of caregivers. Hope as a coping resource for caregiver resilience and well-being. Perspectives on navigating care transitions with individuals with dementia. Planning for and managing costs related to caregiving. Family Caregiving offers a new depth of knowledge and real-world utility to social workers, mental health professionals and practitioners, educators and researchers in the field of family resilience, as well as scholars in the intersecting disciplines of family studies, human development, psychology, sociology, social work, education, law, and medicine.
A groundbreaking exploration of the sociology of dementia — with contributions from distinguished international scholars and practitioners. Organised around the four themes of personhood, care, social representations and social differentiation Provides a critical look at dementia and demonstrates how sociology and other disciplines can help us understand its social context as well as the challenges it poses Contributing authors explore the social terrain, responding in part, to Paul Higgs’ and Chris Gilleard’s highly influential work on ageing Breaks new ground in giving specific attention to the social and cultural dimensions of responses to dementia
Given medical advances and greater understanding of healthful living habits, people are living longer lives. Proportionally speaking, a greater percentage of the population is elderly. Despite medical advances, there is still no cure for dementia, and as elderly individuals succumb to Alzheimer's Disease or related dementia, more and more people are having to care their elderly parents and /or siblings. Profiles in Caregiving is practical source of information for anyone who teaches caregiving, acts as a caregiver, or studies caregiving. This book discusses recent research on stress factors associated with caregiving, and what factors impact on successful versus non-successful adaptation to the care-giving role. This is an expanding field in gerontology, and is also of interest to personality and social psychologists studying stress and interpersonal relations. Although there are many books on the cause and treatment of dementia, there has been a book that provides a research investigation into the factors associated with effective caregiving to dementia patients. - Conceptualizes caregiving as a multistage career whose impact on the caregiver continues to be felt after in-home care has ceased - Based upon a longitudinal survey of a demographically diverse sample of principal caregivers over a three-year period - Identifies caregivers who are most at-risk for adverse adaptation to the role - Describes preventative and clinical intervention strategies - Identifies post-care risk and issues - Identifies antecedents to successful adaptation - State of the art analytic techniques - Graphic presentation of empirical findings - Renowned multidisciplinary research team
The vast majority of care provided to adults and elders with chronic illness is given in the home, most often by family members. The caregiver's role is daunting; caregiving is often referred to as a 'career,' requiring long hours and arduous tasks. Primary caregivers show higher rates of morbidity and mortality, and caregiving is a major source of stress and burden to caregiving families. Presently, very little support is available to caregivers from either State or Federal agencies. However, awareness of this worsening problem is growing among health professionals and policy makers. The Spectrum of Family Caregiving for Adults and Elders with Chronic Illness is written for individuals in the helping professions who are in roles that interface with or serve family caregivers who are supporting an adult or elder with a chronic condition. The volume includes eight disease-specific chapters written by experts from various disciplines. Each discusses the caregiving role and includes a thorough review of the literature on the characteristics of caregivers and care-recipients, including related care needs, issues, and challenges unique to that chronic illness. Chapters also review the extant literature on caregiver interventions. An Evidence Table is included in each of these chapters so that the reader can easily judge the quality of evidence supporting the intervention studies. Finally, each chapter includes two case studies describing common problems encountered by caregivers, along with descriptions of interventions used to address these problems. The final chapter summarizes the state of the science on caregiving roles and caregiver interventions and discusses the most relevant challenges and barriers faced by today's caregivers and caregiver advocates. This book will be valuable to clinicians and those in the helping professions, as well as academics and researchers with an interest in the study of family caregiving and caregiver interventions, and to health administrators, public officials, and policy makers concerned with chronic illness care and management.
This book presents strategies for analyzing qualitative and mixed methods data with MAXQDA software, and provides guidance on implementing a variety of research methods and approaches, e.g. grounded theory, discourse analysis and qualitative content analysis, using the software. In addition, it explains specific topics, such as transcription, building a coding frame, visualization, analysis of videos, concept maps, group comparisons and the creation of literature reviews. The book is intended for masters and PhD students as well as researchers and practitioners dealing with qualitative data in various disciplines, including the educational and social sciences, psychology, public health, business or economics.
