End Of Life Care For People With Dementia

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 original Dementia Reconsidered: The Person Comes First by Tom Kitwood was published by Open University Press in 1997. It was a seminal text in the field of dementia studies and is still cited and referenced as core reading on person-centred dementia care. Tom died unexpectedly, just 12 months after the book was published. This book continues to inspire many people to challenge simplistic paradigms about dementia. Since the original book was written, however, there have been many changes in our understanding of dementia. The editor of this new edition, Dawn Brooker was mentored by Tom Kitwood. She has drawn together a remarkable group of writers to provide a commentary on Kitwood’s work. This new edition reproduces the original chapters but provides extra content from subject experts to update the book to a contemporary level. Dementia Reconsidered Re-visited is an ideal main text or supplementary text for all those studying or working in nursing, medicine, psychiatry, psychology, occupational therapy, social work, adult education, gerontology and health and social care more generally. “This important book does three things. It brings to a new generation the insight and vision of Tom Kitwood. It highlights the remarkable progress we have made in recent years. But most important of all it reminds us what still needs to be done if we are to fully respect the rights of people with dementia and their family care-givers. Kitwood inspired Alzheimer’s Society to knit together research, care, and societal change. We are now re-inspired to make sure all progress is evidenced and evaluated for its impact. We must realise the enormous opportunities the digital age offers people affected by dementia but in doing so constantly listen to and learn from their many and varied voices across nations and cultures.” Jeremy Hughes CBE, Chief Executive, Alzheimer's Society, UK

"Textbook of Palliative Care is a comprehensive, clinically relevant and state-of-the art book, aimed at advancing palliative care as a science, a clinical practice and as an art. Palliative care has been part of healthcare for over fifty years but we still find ourselves having to explain its nature and practice to colleagues and to the public in general. Healthcare education and training has been slow to recognize the vital importance of ensuring that all practitioners have a good understanding of what is involved in the care of people with serious or advanced illnesses and their families. However, the science of palliative care is advancing and our understanding concerning many aspects of palliative care is developing rapidly. The book is divided into separate sections for ease of use. Over 100 chapters written by experts in their given fields provide up-to-date information on a wide range of topics of relevance to those providing care towards the end of life no matter what the disease may be. We present a global perspective on contemporary and classic issues in palliative care with authors from a wide range of disciplines involved in this essential aspect of care. The Textbook includes sections addressing aspects such as symptom management and care provision, organization of care in different settings, care in specific disease groups, palliative care emergencies, ethics, public health approaches and research in palliative care. This Textbook will be of value to practitioners in all disciplines and professions where the care of people approaching death is important, specialists as well as non-specialists, in any setting where people with serious advanced illnesses are residing. It is also an important resource for researchers, policy-and decision-makers at national or regional levels. Neither the science nor the art of palliative care will stand still so we aim to keep this Textbook updated as the authors find new evidence and approaches to care. ." - Prové de l'editor.

2010 AJN Book of the Year Award Winner in both Gerontologic Nursing and Hospice and Palliative Care! "This book...provides important information on best practices and appropriate ways to care for a person with Alzheimer's and advanced dementia. Drs. Martin and Sabbagh have assembled a team of experts to help craft recommendations that should ultimately become standards that all professional caregivers adopt." -Michael Reagan Son of former President Ronald Reagan President, Reagan Legacy Foundation This book testifies that caregivers can have a monumental impact on the lives of persons with advanced dementia. Through specialized programming and a renewed effort toward patient-centered care, caregivers can profoundly enrich the quality of life for these persons. Providing guidelines for health care professionals, caregivers, and family members, this book introduces palliative care programs and protocols for the treatment of people with advanced dementia. The book is designed to guide professional caregivers in meeting the needs of patients and their families, providing insight into the philosophy, assessment, planning, implementation, and evaluation measures involved in interdisciplinary palliative care. The chapter authors offer guidelines and standards of care based on contributions from nurses, physical therapists, social workers, dietitions, psychologists, family caregivers and pastors. An exhibit at the end of every chapter clearly articulates the standards of care appropriate for all advanced dementia facilities and health care staff. This book helps caregivers: Enhance the physiological, psychological, social, and spiritual well-being of the patient and the patient's family Anticipate and meet the patient's basic human needs: hunger, thirst, body positioning, hygiene, continence, and management of any pain Ensure that the patient's surroundings are safe, comfortable, and homelike Address health care decisions that will support the patient's right to self-determination until the end of life

Supportive Care for the person with dementia provides a broad and full perspective, drawing upon the experience and expertise of a wide range of internationally-based professionals to outline a model of supportive care that will provide good quality and holistic care for people with dementia.

Improvements in health care in the 21st century mean people are living longer, but with the paradox that chronic illness is increasingly prevalent. Dementia, a term used to describe various different brain disorders that involve a loss of brain function that is usually progressive and eventually severe, is a condition associated with an ageing population and is becoming increasingly common. Worldwide there are approximately 25 million people with dementia, expected to rise to 63 million by 2030, and 114 million by 2050. Inevitably, people living with dementia will die, but their needs at the end of life are not well known. This book describes what might be achieved if the values and best practice of both dementia care and palliative care are brought together, to achieve quality end of life care for this specific group of patients. It explores what is known about the experience of dying with dementia, using a narrative approach, and develops a model that draws together a 'person-centered' approach to care. The book examines the possibiities and the challenges faced when trying to improve quality of life for people with dementia, and presents examples of good practice from across the world.

People with dementia need increasingly specialised support as they approach the end of life, and so too do their families and the professionals working with them. This book describes not only what can be done to ensure maximum quality of life for those in the final stages of the illness, but also how best to support those involved in caring for them. Emphasising the importance of being attuned to the experiences and needs of the person with dementia, the authors explain why and how they should be included in decisions relating to their end of life care. Practical strategies for ensuring physical and emotional wellbeing are provided, drawing on useful examples from practice and providing solutions to potential challenges that carers and family members will face. Dilemmas surrounding end of life care are explored in detail, including the moral dilemma of medical intervention, and the authors suggest ways of supporting family members through the process in terms of providing information, helping them adjust to change and loss, and involving them in their relative's care, and at how care staff can be supported through appropriate education and training, team building and information-giving. This is an essential resource for anyone who wishes to provide compassionate, person-centred care for a person with dementia as they approach the end of life, including care staff, nurses, social workers and related professionals.

Making Tough Decisions about End-of-Life Care in Dementia is a lifeline, an invaluable guide to assist in the late stage of dementia.