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The first book to provide a comprehensive look at what it's like to have dementia and the subjective experience of living with progressive memory loss. Few families are untouched by Alzheimer's disease or a related dementia. Moving accounts of what it is like to care for someone with this disease have already been published, as well as how-to books that offer caregivers advice and information on coping. But this book is the first to provide a comprehensive report of what it is like to have dementia oneself—the subjective experience of living with progressive memory loss. Each chapter discusses a different aspect of having dementia, from the initial assessment and diagnosis through placement in a nursing home. The discussions are grounded in qualitative research and case studies, which convey the variable and personal nature of the experience. They seek to help clinicians, researchers, students, and caregivers (both professionals and family members) understand the experience of dementia, and thereby to promote better caregiving through a person-centered approach. Contributors: Kathleen Kahn-Denis, Judson Retirement Community; Casey Durkin, a psychotherapist in Cleveland, Ohio; Jane Gilliard, Dementia Voice, UK; Phyllis Braudy Harris, John Carroll University; John Keady, University of Wales, UK; John Killick, University of Stirling, UK; Rebecca G. Logsdon, University of Washington; Charlie Murphy, University of Stirling, UK; Alison Phinney, University of British Columbia, Canada; Steven R. Sabat, Georgetown University; Dorothy Seman, Alzheimer's Family Care Center, Chicago; Lisa Snyder, University of California, San Diego; Jane Stansell, Alzheimer's Family Care Center, Chicago; Gloria Sterin, Shaker Heights, Ohio; Jon C. Stuckey, Messiah College; Robyn Yale, Consultant to the Alzheimer's Association, San Francisco; Rosalie Young, Wayne State University School of Medicine.
The guide tells you how to: Understand how AD changes a person Learn how to cope with these changes Help family and friends understand AD Plan for the future Make your home safe for the person with AD Manage everyday activities like eating, bathing, dressing, and grooming Take care of yourself Get help with caregiving Find out about helpful resources, such as websites, support groups, government agencies, and adult day care programs Choose a full-time care facility for the person with AD if needed Learn about common behavior and medical problems of people with AD and some medicines that may help Cope with late-stage AD
"A new ethics guideline for caregivers of "deeply forgetful people" and a program on how to communicate and connect based on 30 years of community dialogues through Alzheimer's organizations across the globe"--
A definitive and compelling book on one of today's most prevalent illnesses. In 2020, an estimated 5.8 million Americans had Alzheimer’s, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2050. Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its beginnings to its recognition as a crisis. While it is an unambiguous account of decades of missed opportunities and our health care systems’ failures to take action, it tells the story of the biomedical breakthroughs that may allow Alzheimer’s to finally be prevented and treated by medicine and also presents an argument for how we can live with dementia: the ways patients can reclaim their autonomy and redefine their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society that would give caregivers and patients better quality of life. Rich in science, history, and characters, The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.
New edition, completely rewritten, with new chapters on endovascular surgery and mitochrondrial and ion channel disorders.
Simple ways to connect when you visit with a family member or friend.
A reference on preventing, treating, and coping with dementia, from “one of the most reliable, respected health resources that Americans have” (Publishers Weekly). This book from the world-renowned Mayo Clinic offers an update on what experts know about Alzheimer’s and related dementias, including the latest research into treatment and prevention, ways to live well with dementia, and recommendations for caregivers. While Alzheimer’s disease is the most common type of dementia, many related types also affect adults worldwide, causing loss of memory, reason, judgment, and other cognitive functions. Although the diseases that cause dementia have long been considered unrelenting and incurable, recent advances offer hope. This book includes information about: • What to expect of typical aging and what are the earliest signs of abnormal aging • Memory loss and other forms of cognitive impairment that may lead to dementia • Characteristic features of Alzheimer’s disease and related dementias, including frontotemporal degeneration, Lewy body dementia, and vascular cognitive impairment • The latest research on Alzheimer’s disease and related dementias • Caring for and supporting someone living with dementia Are there ways you can lower your risk? Can dementia be prevented? Can you live well with dementia? If so, how? You’ll find answers to these important questions and more in this book.
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.
The 36-Hour Day is the definitive dementia care guide.
Soul-searing, life-testing situations have what some call “fall-out blessings.” The book is about understanding some of the deeper lessons we are exposed to through caring for individuals with Alzheimer’s and other types of dementia. We all want a cure. But in the meantime, while this illness is still with us, how can we create a quality of life for each person in each stage of the disease? How can we look deeper into situations that, at first glance, look hopeless and destructive in order to find opportunities for insight, inspiration, and great understanding of ourselves and those we love? How can we allow the full measure of the experience to unfold and be felt with as much of ourselves as we can bring to bear? This book will help people caring for those going through the difficult dementia journey find a way, through the tumultuous waves, to remain awake and open to the blessing of a journey that opens the heart, nurtures compassion, and ultimately enables each of us to be better human beings. It is also for those brave individuals living with memory loss illnesses, so that they be supported and allowed to live their experience fully in their own unique way, to express themselves, to love and be loved, and to be sheltered from harm—that with each stage of the progression, those around the person with dementia find ways to emphasize the loved one’s remaining strengths rather than spotlight their weaknesses. A person with dementia has a whole and well spirit and, in the broadest sense, their brain is a vehicle of self-expression; it does not define their essence. Finally, this book addresses head on the final stage of the disease, when the brain has exhausted all its compensatory ability and the individual is no longer able to take part in regular day-to-day life. At this advanced stage of the disease process, people with dementia are in a deep, internal state that caregivers generally cannot access and share. It can be a very disheartening time. This internal state separates the person with dementia from those around them; however, rather than thinking of it as a prison wall separating the person with dementia from the caregiver, it may be more helpful to think of the person having retreated into a cloistered existence for a while, affording them the time needed by the soul to attend to deeper aspect of the self on a spiritual level. This phase also allows those around the person to honor the vessel, or body, that has housed the loved in in this life and prepare to let them go. When ready the individual will know the time to leave, and if allowed, will let go. Coming from a rich professional background in caring, Megan Carnarius clearly outlines the different stages of dementia and highlights many practical aspects of dementia care, suggesting accessible tools for family and professionals alike. She also addresses the more subtle, spiritual dimensions of this illness with much compassion and understanding, offering new insights into areas that have not been explored in other books on the disease.