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This gripping story of the doctors at the forefront of Alzheimer’s research and the courageous North Dakota family whose rare genetic code is helping to understand our most feared diseases is “excellent, accessible...A science text that reads like a mystery and treats its subjects with humanity and sympathy” (Library Journal, starred review). Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can. The DeMoe family has the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in one hundred percent of cases, and has a fifty percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, daughter Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure. Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. “A compelling narrative…and an educational and emotional chronicle” (Kirkus Reviews, starred review), their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this inspiring race against time redefines courage in the face of this most pervasive and mysterious disease.
If you are facing the unique challenges of caring for a parent with dementia, you are not alone. What do you do when your loved one so plainly needs assistance, but is confused, angry, or resistant to your help? Where can you find the vital information you need, when you need it? Journalist Thomas Harrison and leading geriatric psychiatrist Brent Forester show that you don’t have to be a medical expert to be a good care provider in this authoritative guide. They explain the basics of dementia and offer effective strategies for coping with the medical, emotional, and financial toll. With the right skills, you can navigate changing family roles, communicate better with your parent, keep him or her safe, and manage difficult behaviors. Learn how to "care smarter, not harder"--and help your loved one maintain the best possible quality of life. Winner (Second Place)--American Journal of Nursing Book of the Year Award, Consumer Health Category Winner (Third Place)--Foreword INDIES Book of the Year Award, Family & Relationships Category
New edition, completely rewritten, with new chapters on endovascular surgery and mitochrondrial and ion channel disorders.
Your needs as a caregiver are just as important as those your family member with Alzheimer's Disease or dementia. This book will provide just the insight and guidance you need. Caregiving for a loved one with Alzheimer's disease or dementia is hard. It's hard whether you're caring for your spouse, parent, grandparent, sibling, other family member, or friend. Even if you had an extra ten hours each day to do it, it's hard to manage all the problems that come with dementia. And caring for a loved one with dementia can sometimes feel like a long, lonely journey. Six Steps to Managing Alzheimer's Disease and Dementia can help, addressing concerns such as: · Is the problem Alzheimer's, dementia, or something else? · How do you approach problems in dementia? · How do you manage problems with memory, language, and vision? · How do you cope with emotional and behavioral problems? · What are the best ways to manage troubles with sleep and incontinence? · Which medications can help? · Which medications can actually make things worse? · How do you build your care team? · Why is it important to care for yourself? · How do you sustain your relationship with your loved one? · How do you plan for the progression of dementia? · How do you plan for the end and beyond? Six Steps to Managing Alzheimer's Disease and Dementia is comprehensive yet written in an easy-to-read style, featuring clinical vignettes and character-based stories that provide real-life examples of how to successfully manage Alzheimer's disease and dementia.
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.
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
The 36-Hour Day is the definitive dementia care guide.
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.
Alzheimer's disease is a growing public health crisis. According to the Alzheimer's Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people - the Alzheimer's family - undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer's patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer's family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.
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.