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People with dementia are uniquely qualified to discuss the challenges of their condition and the features of effective support, but their voices are all too often drowned out in research and debates about policy. It's time for that to change. Dementia Enquirers is an ambitious and novel programme of work which has tested out what it means for people with dementia to lead research and has developed a new 'driving seat' approach to co-research. This ground-breaking book features 26 research projects led by groups of people with dementia, supported by group facilitators and academics, to make their voices heard. Topics include giving up driving, GP dementia reviews, living alone with dementia, and using AI platforms such as smart speakers. The book also describes how people with dementia shaped the entire programme, and addressed head-on issues such as ethics approval processes and complex research language. A key read for anyone involved in dementia support, this research brings the voices of people with dementia to the fore to explore their experiences of researching the condition.
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.
Societies around the world are concerned about dementia and the other forms of cognitive impairment that affect many older adults. We now know that brain changes typically begin years before people show symptoms, which suggests a window of opportunity to prevent or delay the onset of these conditions. Emerging evidence that the prevalence of dementia is declining in high-income countries offers hope that public health interventions will be effective in preventing or delaying cognitive impairments. Until recently, the research and clinical communities have focused primarily on understanding and treating these conditions after they have developed. Thus, the evidence base on how to prevent or delay these conditions has been limited at best, despite the many claims of success made in popular media and advertising. Today, however, a growing body of prevention research is emerging. Preventing Cognitive Decline and Dementia: A Way Forward assesses the current state of knowledge on interventions to prevent cognitive decline and dementia, and informs future research in this area. This report provides recommendations of appropriate content for inclusion in public health messages from the National Institute on Aging.
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.
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.
This book addresses current issues in the neuroscience and ethics of dementia care, including philosophical as well as ethical legal, and social issues (ELSIs), issues in clinical, institutional, and private care-giving, and international perspectives on dementia and care innovations. As such, it is a must-read for anyone interested in a well-researched, thought-provoking overview of current issues in dementia diagnosis, care, and social and legal policy. All contributions reflect the latest neuroscientific research on dementia, either broadly construed or in terms of the etiologies and symptoms of particular forms of dementia. Given its interdisciplinary and international scope, its depth of research, and its qualitative emphasis, the book represents a valuable addition to the available literature on neuroethics, gerontology, and neuroscientific memory research.
First Published in 1996. Routledge is an imprint of Taylor & Francis, an informa company.
An authority on Alzheimer's disease offers a history of past failures and a roadmap that points us in a new direction in our journey to a cure. For decades, some of our best and brightest medical scientists have dedicated themselves to finding a cure for Alzheimer's disease. What happened? Where is the cure? The biggest breakthroughs occurred twenty-five years ago, with little progress since. In How Not to Study a Disease, neurobiologist Karl Herrup explains why the Alzheimer's discoveries of the 1990s didn't bear fruit and maps a direction for future research. Herrup describes the research, explains what's taking so long, and offers an approach for resetting future research. Herrup offers a unique insider's perspective, describing the red flags that science ignored in the rush to find a cure. He is unsparing in calling out the stubbornness, greed, and bad advice that has hamstrung the field, but his final message is a largely optimistic one. Herrup presents a new and sweeping vision of the field that includes a redefinition of the disease and a fresh conceptualization of aging and dementia that asks us to imagine the brain as a series of interconnected "neighborhoods." He calls for changes in virtually every aspect of the Alzheimer's disease research effort, from the drug development process, to the mechanisms of support for basic research, to the often-overlooked role of the scientific media, and more. With How Not to Study a Disease, Herrup provides a roadmap that points us in a new direction in our journey to a cure for Alzheimer's.
The Shriver Report: A Woman’s Nation Takes on Alzheimer’s will be the first comprehensive multi-disciplinary look at these questions at this transformational moment. The Report will digest the current trends in thinking about Alzheimer’s, examine cutting-edge medical research, look at societal impacts, and include a groundbreaking and comprehensive national poll. It will feature original photography and personal essays by men and women – some from the public arena with names you know, some from everyday America – sharing their personal struggles with the disease as patients, caregivers and family members.
Almost 25 years have passed since the Demography of Aging (1994) was published by the National Research Council. Future Directions for the Demography of Aging is, in many ways, the successor to that original volume. The Division of Behavioral and Social Research at the National Institute on Aging (NIA) asked the National Academies of Sciences, Engineering, and Medicine to produce an authoritative guide to new directions in demography of aging. The papers published in this report were originally presented and discussed at a public workshop held in Washington, D.C., August 17-18, 2017. The workshop discussion made evident that major new advances had been made in the last two decades, but also that new trends and research directions have emerged that call for innovative conceptual, design, and measurement approaches. The report reviews these recent trends and also discusses future directions for research on a range of topics that are central to current research in the demography of aging. Looking back over the past two decades of demography of aging research shows remarkable advances in our understanding of the health and well-being of the older population. Equally exciting is that this report sets the stage for the next two decades of innovative researchâ€"a period of rapid growth in the older American population.