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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.
Patients diagnosed with Alzheimer's disease and related dementias (ADRD) rely on family members, their community, and the health care system for progressively increasing support over the course of their disease. These people receive care through a frequently siloed health care system across hospitals, nursing homes, ambulatory care settings, and long-term care settings, as well as community- and home-based care. As the number of people living with a diagnosis of ADRD continues to grow, so does the need to provide better support for these people and their caregivers. The National Institute on Aging (NIA) Division of Behavioral and Social Research suggests that organizational behavior change will be needed for health care systems to integrate all of the services and supports required to provide high-quality care for people with ADRD. NIA sponsored a workshop hosted by the National Academies of Sciences, Engineering, and Medicine to explore mechanisms to improve the quality of care for people living with ADRD and the potential of innovative payment models to incentivize health care systems to make the necessary systemic changes. The workshop convened a diverse array of experts in fields including nursing, geriatrics, health care economics, health care services research, quality measurement, social work, medical ethics, law, health care finance, and health care policy. This publication summarizes the presentation and discussion of the workshop.
Health information technology is providing patients, clinicians, and researchers with access to data that will enable novel approaches to science and medicine. Digital health records (DHRs) are capable of being shared across different health care settings for the examination of possible trends and long-term changes in a patient's disease progression or status as well as the effectiveness of the health care delivery system. While prevalence of paper records remains high, there has been a rapid trend toward the digitalization of medical and health records in many countries. DHRs are widely viewed as essential for improving health, reducing medical errors, and lowering costs. However, given that these databases have the potential to house the complete medical and health information of individuals, the potential misuse, de-identification or breaching of this data may have serious implications. On July 20, 2015, the Institute of Medicine's Forum on Neuroscience and Nervous System Disorders held a public session at the 2015 Alzheimer's Association International Conference to assess the impact of DHRs on Alzheimer's disease (AD) research. An estimated 46.8 million people worldwide are currently living with dementia, and the prevalence is expected to double every year for the next 20 years. Given the few therapies currently available to treat the symptoms of AD, compared to other central nervous system disorders, participants explored how DHRs may be used to help improve clinical trial design and methodology for AD research. This report summarizes the presentations and discussions from this workshop.
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.
It is fair to say that no brain disease occupies more research study today than Alzheimer's disease (AD). Among the many excellent reasons for this circumstance are the bleak prognosis and relentless progression; large cohorts of baby boomers entering an age of greatly increased cognitive risk; and spectacular advances in medical care that have prolonged lifespan. Often unattributed is the success of the research enterprise that has instilled confidence in AD's ultimate defeat. Yet, despite decades of intense research, AD remains poorly understood, an enigma amid a tide of neuroscientific advance. What these inconclusive results apparently call into question is an understanding of cognition that views it from the bottom up - the study of which is eminently suited by the scientific method - and that dispenses with a philosophy of biology concerned with how organismal properties operate, for which cognition is the medium. Culled from AD's new and old research archives, the chapters in this text accordingly lay out an argument for strategically new pathways that wander through cognition's global terrain and that may ultimately offer surer ground for AD treatment.
As the first of the nation's 78 million baby boomers begin reaching age 65 in 2011, they will face a health care workforce that is too small and woefully unprepared to meet their specific health needs. Retooling for an Aging America calls for bold initiatives starting immediately to train all health care providers in the basics of geriatric care and to prepare family members and other informal caregivers, who currently receive little or no training in how to tend to their aging loved ones. The book also recommends that Medicare, Medicaid, and other health plans pay higher rates to boost recruitment and retention of geriatric specialists and care aides. Educators and health professional groups can use Retooling for an Aging America to institute or increase formal education and training in geriatrics. Consumer groups can use the book to advocate for improving the care for older adults. Health care professional and occupational groups can use it to improve the quality of health care jobs.

Alzheimer's Disease

National Institute of Neurological and Communicative Disorders and Stroke. Office of Scientific and Health Reports

Published: 1980

Total Pages: 24


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This book details how "Alzheimer Disease" went from being an obscure neurologic diagnosis to a household word. The words of those responsible for this revolution are the heart of this book. Dr. Robert Katzman and Dr. Katherine Bick, leaders in Alzheimer research and policy making, interview the people responsible for this awakening of public consciousness about Alzheimer Disease from 1960 to 1980. They speak with the scientists, public health officials, government regulators, and concerned relatives and activists responsible for taking this neurodegenerative disease out of the "back wards" through the halls of Congress, and on to the front page. The reader will learn how the explosive increase in research funding and public awareness came about, how physicians and psychiatrists established diagnostic criteria, how drugs were developed that offer hope for sufferers, and how the Alzheimer's Association was born. * Written in the words of those responsible for the widespread recognition of this neurodegenerative disease * The authors are recognised as leaders in Alzheimer research and policy making