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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.
Nederland telt op dit moment 250.000 dementerenden en hun aantal neemt toe. Ooit treft wellicht onze ouders, onze geliefden of onszelf dit lot. Anne-Mei The werkte als onderzoeker twee jaar in een verpleeghuis. Zij onthult wat meestal verborgen blijft: de beslissing om te stoppen met behandelen. De armoede en voodoo-rituelen van de gekleurde verzorgenden. Problemen die kunnen optreden met de familie. Spanningen, agressie en seks op de afdeling. Maar ze maakt ons ook deelgenoot van ontroerende en hilarische taferelen. Daarnaast ontrafelt The 'de zaak 't Blauwbörgje' die in de jaren negentig in het nieuws kwam. De familie van een diep demente man beschuldigde het verpleeghuis van poging tot moord. Wat ging er mis? En kan zoiets weer gebeuren? Het boek leest als een roman en zet eenieder aan het denken over de invulling van zijn of haar eigen levenseinde in het geval van dementie.
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.
This in-depth description of life in a nursing/care home for 70 residents and 40 staff highlights the daily care of frail or ill residents between 80 and 100 years of age, including people suffering with dementia. How residents interact with care assistants is emphasised, as are the different behaviours of men and women observed during a year of daily conversations between the author, patients and staff, who share their stories of the pressures of the work. Living Before Dying shows a world where, in extreme old age, people have to learn how to cope with living communally.
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.
Caring for someone with dementia presents different challenges than caring for others with health care issues.People with dementia don't "play by the rules" that signify approaching death from disease or old age. This booklet outlines the issues and progress that a person with dementia will probably follow.The aim of this booklet is to provide information regarding approaching end of life to those people, family and significant others, who are making decisions for and caring for someone with dementia. It would be given to the family upon admission to the Palliative Care program or to any family that is having to address the eating and not eating dilemma.Like it's companions, Gone From My Sight and The Eleventh Hour, How Do I Know You? is short, written in large print, and the information is conveyed in a simple, direct yet gentle manner.
Winner of the Michael Ramsay Prize 2016 Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it. Here, John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions: • Who am I when I’ve forgotten who I am? • What does it mean to love God and be loved by God when I have forgotten who God is? Offering compassionate and carefully considered theological and pastoral responses to dementia and forgetfulness, Swinton’s Dementia redefines dementia in light of the transformative counter story that is the gospel.
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
Nautilus Book Awards — Silver Award Winner 2010 had been a very good year for Bruce H. Kramer. But what began as a floppy foot and leg weakness led to a shattering diagnosis: he had amyotrophic lateral sclerosis. ALS is a cruel, unrelenting neurodegenerative disease in which the body’s muscles slowly weaken, including those used to move, swallow, talk, and ultimately breathe. There is no cure: ALS is a death sentence. When death is a constant companion, sitting too closely beside you at the dinner table, coloring your thoughts and feelings and words, your outlook on life is utterly transformed. The perspective and insights offered in We Know How This Ends reveal this daily reality and inspire a way forward for anyone who has suffered major loss and for anyone who surely will. Rather than wallowing in sadness and bitterness, anger and denial, Kramer accepted the crushing diagnosis. The educator and musician recognized that if he wanted a meaningful life, then embracing his imminent death was his only viable option. His decision was the foundation for profound, personal reflection and growth, even as his body weakened, and inspired him to share the lessons he was learning from ALS about how to live as fully as possible, even in the midst of devastating grief. At the time Kramer was diagnosed, broadcast journalist Cathy Wurzer was struggling with her own losses, especially her father’s slow descent into the bewildering world of dementia. Mutual friends put this unlikely pair—journalist and educator—together, and the serendipitous result has been a series of remarkable broadcast conversations, a deep friendship, and now this book. Written with wisdom, genuine humor, and down-to-earth observations, We Know How This Ends is far more than a memoir. It is a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life.
NEW YORK TIMES BESTSELLER • A powerful memoir of a love that leads two people to find a courageous way to part—and a woman’s struggle to go forward in the face of loss—that “enriches the reader’s life with urgency and gratitude” (The Washington Post) “A pleasure to read . . . Rarely has a memoir about death been so full of life. . . . Bloom has a talent for mixing the prosaic and profound, the slapstick and the serious.”—USA Today ONE OF THE BEST BOOKS OF THE YEAR: NPR Amy Bloom began to notice changes in her husband, Brian: He retired early from a new job he loved; he withdrew from close friendships; he talked mostly about the past. Suddenly, it seemed there was a glass wall between them, and their long walks and talks stopped. Their world was altered forever when an MRI confirmed what they could no longer ignore: Brian had Alzheimer’s disease. Forced to confront the truth of the diagnosis and its impact on the future he had envisioned, Brian was determined to die on his feet, not live on his knees. Supporting each other in their last journey together, Brian and Amy made the unimaginably difficult and painful decision to go to Dignitas, an organization based in Switzerland that empowers a person to end their own life with dignity and peace. In this heartbreaking and surprising memoir, Bloom sheds light on a part of life we so often shy away from discussing—its ending. Written in Bloom’s captivating, insightful voice and with her trademark wit and candor, In Love is an unforgettable portrait of a beautiful marriage, and a boundary-defying love.