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Life at Home for People with a Dementia provides an evidence-based and readable account of improving life at home for people with a dementia and their families. There are estimated to be 47 million people with a dementia worldwide, the majority of whom will live, or want to live, in their own home. Yet there is a major shortcoming in available knowledge on what life is like for people with a dementia living at home. Most research focuses on care in hospitals or care homes, and takes a medical perspective. This book bridges this gap in knowledge by providing a comprehensive and critical overview of the best available evidence on enabling people with a dementia to live well at home from the viewpoint of those living with the condition, and in the context of global policy drivers on ageing and health, as well as technological advances. The book includes chapters on citizenships – that is, the diversity of people living with a dementia – enabling life at home, rethinking self-management, the ethics and care of people with a dementia at home, technological care and citizenship, and sharing responsibilities. It concludes with a care manifesto in which we set out a vision for improving life at home for people with a dementia that covers the areas of professional practice, education and care research. By covering a wide range of interrelated topics to advance understanding and practice as to how people with a dementia from diverse backgrounds can be supported to live well at home, this book provides a synthesised, critical and readable understanding of the complexities and risks involved.
What 'kind' of community is demanded by a problem like dementia? As aspects of care continue to transition from institutional to community and home settings, this book considers the implications for people living with dementia and their carers. Drawing on extensive fieldwork and case studies from Canada, this book analyses the intersections of formal dementia strategies and the experiences of families and others on the frontlines of care. Considering the strains placed on care systems by the COVID-19 pandemic, this book looks afresh at what makes home-based care possible or impossible and how these considerations can help establish a deeper understanding necessary for good policy and practice.
Now in paperback, the cultural and medical history of dementia and Alzheimer's disease by a leading psychiatrist and bioethicist who urges us to turn our focus from cure to care. Despite being a physician and a bioethicist, Tia Powell wasn't prepared to address the challenges she faced when her grandmother, and then her mother, were diagnosed with dementia--not to mention confronting the hard truth that her own odds aren't great. In the U.S., 10,000 baby boomers turn 65 every day; by the time a person reaches 85, their chances of having dementia approach 50 percent. And the truth is, there is no cure, and none coming soon, despite the perpetual promises by pharmaceutical companies that they are just one more expensive study away from a pill. Dr. Powell's goal is to move the conversation away from an exclusive focus on cure to a genuine appreciation of care--what we can do for those who have dementia, and how to keep life meaningful and even joyful. Reimagining Dementia is a moving combination of medicine and memoir, peeling back the untold history of dementia, from the story of Solomon Fuller, a black doctor whose research at the turn of the twentieth century anticipated important aspects of what we know about dementia today, to what has been gained and lost with the recent bonanza of funding for Alzheimer's at the expense of other forms of the disease. In demystifying dementia, Dr. Powell helps us understand it with clearer eyes, from the point of view of both physician and caregiver. Ultimately, she wants us all to know that dementia is not only about loss--it's also about the preservation of dignity and hope.
A guide to help family and friends navigate the emotional and practical challenges they face when someone they love is living in community care. Life changes dramatically for the entire family when the decision is made to move a person who has dementia from home to community care. Rachael Wonderlin, a gerontologist, dementia care expert, and popular dementia care blogger, helps caregivers cope with the difficult behaviors, emotions, and anxieties that both they and their loved one may experience. Writing from her own practice and drawing on the latest research in gerontology and dementia, Wonderlin explains the different kinds of dementia, details the wide range of care communities available for people who have dementia, and speaks empathetically to the worry and guilt many families feel. "Do not let anyone make you feel like you have taken the 'easy way out' by choosing a dementia care community," she writes. "You are still going to deal with a lot of challenging behaviors, concerns, and questions regarding your loved one's care." When Someone You Know Is Living in a Dementia Care Community is an accessible guide offering answers to such questions as: How do I choose a place for my loved one to live? What can I find out by visiting a candidate memory-care community twice? What do I do if my loved one asks about going home? How can I improve the quality of my visits? What is the best way to handle conflict between residents, or between the resident and staff? How can I cope with my loved one's sundowning? What do I do if my loved one starts a romantic relationship with another resident? An indispensable book for family members and friends of people with dementia, When Someone You Know is Living in a Dementia Care Community touches the heart while explaining how to make a difficult situation better.
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.
This book presents the latest research that shows how design thinking, making, and acting contribute to the co-designing and development of products, spaces, and services with people living with dementia. We know that there is currently no cure for the 130+ kinds of dementia that millions of people live with all over the world, but the designed interventions such as the products, spaces, and services described in this book can address stigma, isolation, loss of confidence, and raise awareness and greater understanding of dementia. This book showcases a range of innovative and creative design interventions that have been developed to break the cycle of well-established opinions, strategies, mindsets, and ways of doing that tend to remain unchallenged in the health and social care of people living with dementia. The book will be of interest to scholars working in product design, service design, experience design, architecture, design research, information design, user-centred design, and design for health.
Most people with dementia want live in the familiar comfort of their own home and maintain engagement with their community and their world. My home, my life brings together the voice of people with dementia and carers with the beast learning from research and care experience to provide insightful tips, strategies and real-life stories to support greater independence.Whether it is through a better understanding of the impact of dementia and ageing, tips on good design at home, strategies for going out or approaches to communication and care, My home, my life will enable people with dementia, carers and their support networks to meet challenges with courage and creativity.
Written by leading international experts, this book discusses the latest advances in the field of dementia in nursing homes. The topics and findings covered are based on their survey and on a scientific literature review. Dementia is spreading worldwide, placing a growing burden on healthcare systems and caregivers, as well as those affected. With increasing and complex care needs, nursing home admission is often necessary. Globally, over half of nursing home residents suffer from dementia. The book provides essential information on the most important issues in dementia in nursing homes today, including meaningful activities, patient-/person-centered care, psychosocial interventions, challenging behavior, inclusion and support of family members, pain, staff training and education, communication, polypharmacy, quality of life, end-of-life care and advanced care planning, depression, delirium, multidisciplinary approaches, physical restraints and care dependency. Each topic is covered by an international expert in dementia. As such, the book will appeal to professional nurses, nursing scientists, nursing students, other healthcare professionals, and to a broad readership, and will provide a valuable resource for those working in nursing homes, as well as researchers in the field.
The target audience is women between the ages of 42 and 65. They represent the majority of unpaid care givers for loved ones with dementia. Dementia Home Care: How to Prepare Before, During and After will examine taking on the role of care giver and help them make informed decisions about in-home care giving. It will give examples of how to create a safe living space, how to use distraction techniques, and suggest available resources for the care giver. It will emphasize the role of care giver respite and participating in dementia community support to relieve the daily stress of dementia care. Home care giver, Tracy Cram Perkins, will use anecdotes drawn from twelve years of experience. Demetia Home Care will cover aggressive behavior, coping strategies, memory aids, communication aids, and support services. There is a space at the end of each chapter for the reader to record special or humorous moments with their loved ones. And it will address the empty nester experience after the loss of a loved one—to a nursing facility or to death—rarely covered in other books of this genre. This life-lesson of care giving is not meant to destroy us but meant to remind us to take care of ourselves, forgive ourselves, accept ourselves. To know other people trudge up this same hill with us every day. To pay forward kindness in some measure. To know laughter has not abandoned us. At the end, to know some measure of joy. -- Tracy Cram Perkins
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.