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.
Bradford Dementia Group Good Practice Guides There are always difficult day to day decisions to be faced when caring for a person with dementia - from knowing how to deal with wandering to end of life decisions. Many of these decisions are underpinned by value judgments about right and wrong and reflect a particular view of dementia. This book considers these ethical decisions in the context of relationships, treatment, safety and quality of life, offering practical guidance and advice. It draws on the experiences of family carers as well as on existing research and emphasizes the importance of empathy and the need to acknowledge different perspectives in order to reach the best decision for the person with dementia. In particular the authors discuss the way that decision makers are themselves changed by the decisions they make, and the impact of this on the decision-making process. This book should be read by all those who work caring for people with 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.
This second edition provides the most up-to-date information on all aspects of palliative care including recent developments (including COVID-19), global policies, service provision, symptom management, professional aspects, organization of services, palliative care for specific populations, palliative care emergencies, ethical issues in palliative care, research in palliative care, public health approaches and financial aspects of care. This new Textbook of Palliative Care remains a unique, 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 needs to be explained. 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 theirfamilies. However, the science of palliative care is advancing and this new edition will contribute to a better understanding of this specialty. This new edition offers 20 new chapters out of over 120, 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 new 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 the Editors and contributors from all over the world aim to keep this Textbook updated so that the reader can find new evidence and approaches to care.
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.
In this report, "Care and compassion?" the Health Service Ombudsman says the NHS is failing to treat older people with care, compassion, dignity and respect. The report is based on the findings of ten independent investigations into complaints about NHS care for people over the age of 65 across England. It serves to illuminate the gulf between the principles and values of the NHS Constitution and the felt reality of being an older person in the care of the NHS in England. The Ombudsman's findings show how ten older patients suffered unnecessary pain, indignity and distress while in the care of the NHS. Her investigations highlight common failures in pain control, discharge arrangements, communication with patients and their relatives and ensuring adequate nutrition. These are not isolated cases. Of the nearly 9,000 properly made complaints to the Ombudsman about the NHS last year, 18 per cent were about the care of older people. The Ombudsman accepted twice as many cases for investigation about older people as for all other age groups put together. The findings reveal an attitude - both personal and institutional - which fails to recognise the humanity and individuality of the people concerned and to respond to them with sensitivity, compassion and professionalism. These accounts present a picture of NHS provision that is failing to meet even the most basic standards of care. The NHS must close the gap between the promise of care and compassion outlined in its Constitution and the injustice that many older people experience.
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.
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 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.