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Practical, essential advice about making tough decisions for people with end-stage dementia. Each year, more than 500,000 people are diagnosed with dementia in the United States. As stunning as that figure is, countless family members and caregivers are also affected by each diagnosis. Families are faced with the need to make vital end-of-life decisions about medical treatment, legal and financial matters, and living situations for those who no longer can; no one is prepared for this process. And many caregivers grapple with sadness, confusion, guilt, anger, and physical and mental exhaustion as dementia enters its final stage. In Making Tough Decisions about End-of-Life Care in Dementia, Dr. Anne Kenny, a skilled palliative care physician, describes how to navigate the difficult journey of late-stage dementia with sensitivity, compassion, and common sense. Combining her personal experience caring for a mother with dementia with her medical expertise in both dementia and end-of-life care, Dr. Kenny helps the reader prepare for a family member's death while managing their own emotional health. Drawing on stories of families that Dr. Kenny has worked with to illustrate common issues, concerns, and situations that occurs in late-stage dementia, this book includes practical advice about • making life-altering decisions while preparing for a loved one's inevitable death • medical care, pain, insomnia, medication, and eating • caring for the caregiver • having conversations about difficult topics with other family members and with health care, legal, and financial professionals Concrete to-do lists and lists of important points provide information at a glance for busy caregivers. Each chapter concludes with a list of additional resources for more information and help. Making Tough Decisions about End-of-Life Care in Dementia is a lifeline, an invaluable guide to assist in the late stage of dementia.
For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.
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.
ACP is an essential part of end of life care with patients improving their chances of 'a good death' by creating plans with their families and carers. This new edition gives a comprehensive overview of ACP, explores a wide range of issues and practicalities in providing end of life care, and offers a worldwide perspective.
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.
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
This book provides an overall introduction to the medical management of dementia with chapters dedicated to specific topics such as pain, epilepsy, vascular risk factors in dementia and review of medication, which are often not addressed in books on the subject, and thereby filling a gap in the field. Chapters are supplemented with cases to highlight key concepts and treatment approaches, and to provide the reader with the possibility to reflect on management options and the readers ́ own current practice. This book is aimed at clinicians of different specialties (mainly neurology, psychiatry, geriatric medicine and general practice/family medicine) who manage patients with dementia on a regular basis, and thus provides useful guidance to be used in the clinic.
Being responsible for the needs and care of an elderly loved one can be a difficult role that many of us do willingly but it requires a lot - patience, time, energy, tenderness, and hard work. We often need to make decisions which are life altering for the other person and for ourselves and at times, are not pleasant or easy.How to have a conversation with your elderly loved one about changeDeal with deteriorating physical and mental health in loved ones What happens if they develop dementia? Making the decision on in-home care or a care facilityAdjusting to your role as caregiver while still caring for yourselfTough Decisions in the Care of Elderly Loved Ones is an invaluable, practical, and sympathetic guide to how to give your loved one the best possible care, while addressing the concerns that caretakers may have. After reading the book, you will feel as if someone is holding your hand while you make those tough decisions. In this book, Mahesh Moolani, MD objectively divides the tough situations into four categories and tackles each category in a straightforward way. He offers professional support and guidance on how to maintain a work/life/caring balance and better care for your elderly loved ones.Mahesh Moolani, MD is an Internist who is medical director of two nursing homes and cares for a huge geriatrics population. In his professional career, he has come across thousands of caregivers, who find it hard to provide optimum care to their loved ones, despite their best intentions and efforts.
This volume demonstrates how hospice care leads to improved quality of life for patients with terminal dementia and their families. Much of the information is based on the successful 10-year experience of the E.N. Rogers Memorial Hospital, where the first palliative care program for the management of patients with advanced dementia was developed. The book discusses Alzheimer's and other progressive dementias and reviews the clinical problems encountered, including infections, eating difficulties, and behavioral problems. It further addresses how to implement hospice care programs for these patients and the ethical aspects involved. This volume will be of compelling importance to nurses, physicians, and social workers involved in hospice or home care of patients at the last stages of dementia.