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This book explores how dementia acts as an existential threat, both to people diagnosed with the condition, and to their carers. The authors highlight how dementia not only gradually erodes our most fundamental abilities, but that it does so at a time of life when the resources of individuals, couples, and families are already stretched. While over time many people who are living with dementia are able to adapt to their diagnosis and acknowledge its impact on them, for many others it remains too threatening and painful to do this. The book draws on examples from clinical practice and experimental studies to argue that a range of responses, such as searching for long-dead parents or clinging to previous identities, all represent ways in which people living with dementia attempt to protect themselves against the emotional impact of the condition. Finally, the authors set out new ways of intervening to boost psychological resources and thereby support people in facing the existential threat of dementia.
Drawing on contemporary theoretical concepts including multiple selves, personal construct theory, intrapsychic survival and the effect of historical and political factors on older people's well being, the author calls for a more positive and constructive approach to improving the lives of people with dementia.
Based on the findings of in-depth research and on the author's long-standing experience of working with people with dementia, this ground-breaking book provides fresh perspectives and ideas for policy and practice. In the first part of this extensively referenced and up-to-date book, Michael Bender examines the scientific status of the terms 'dementia', 'Alzheimer's' and 'multi-infarct dementias' and concludes that there is little convincing scientific evidence to justify their continued use. He suggests that in order to develop adequate psychological and social models of dementia, a number of perspectives, such as the intrapsychic, the interpersonal and the contextual, need to be developed. Drawing on contemporary theoretical concepts including multiple selves, personal construct theory, intrapsychic survival and the effect of historical and political factors on older people's well being, the author calls for a more positive and constructive approach to improving the lives of people with dementia. He emphasises the importance of the individual's social context; the problems they are facing and their reactions to those problems; their life history and interpersonal relationships and discusses the process of assessment, finally developing techniques that allow the person with dementia to describe their experience, helping to ameliorate cognitive losses. Taking an honest look at what we really know about dementia and how we can learn more, this innovative book will make essential reading for medical and mental health practitioners, researchers and students working in the field.
As people are living longer on average than ever before, the number of those with dementia will increase. Because many will live a considerable time at home with their diagnosis, we need to know more about the ways people can adapt to and learn to live with dementia in their everyday lives. Lars-Christer Hyd n argues in this book that to do so will involve re-imagining what dementia really is and what it can mean to the afflicted and their loved ones. One of the most important everyday opportunities for sharing experiences is the simple act of storytelling. But when someone close to you gradually loses the ability to tell stories and cherish the shared history you have together, this is seen as a threat to the relationship, to the feeling of belonging together, and to the identity of the person diagnosed. Therefore, learning about how people with dementia can participate in storytelling along with their families and friends helps to sustain those relationships and identities. In Entangled Narratives, Hyd n not only emphasizes the possibilities that are inherent in collaborative storytelling, but instructs professionals and otherwise healthy relatives to learn how to effectively listen and, ultimately, re-imagine their patients and loved ones as collaborative meaning-makers in their lives.
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.
Cultural responses to most illnesses differ; dementia is no exception. These responses, together with a society's attitudes toward its elderly population, affect the frequency of dementia-related diagnoses and the nature of treatment. Bringing together essays by nineteen respected scholars, this unique volume approaches the subject from a variety of angles, exploring the historical, psychological, and philosophical implications of dementia. Based on solid ethnographic fieldwork, the essays employ a cross-cultural perspective and focus on questions of age, mind, voice, self, loss, temporality, memory, and affect. Taken together, the essays make four important and interrelated contributions to our understanding of the mental status of the elderly. First, cross-cultural data show the extent to which the aging process, while biologically influenced, is also very much culturally constructed. Second, detailed ethnographic reports raise questions about the behavioral criteria used by health care professionals and laymen for defining the elderly as demented. Third, case studies show how a diagnosis affects a patient's treatment in both clinical and familial settings.; Finally, the collection highlights the gap that separates current biological understandings of aging from its cultural meanings. As Alzheimer's disease and other forms of dementia continue to command an ever-increasing amount of attention in medicine and psychology, this book will be essential reading for anthropologists, social scientists, and health care professionals.
One in 8 people over age 65 has Alzheimer's disease, and nearly fifty percent of those over age 85. With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves a compelling story of her long journey caregiving for her demented mother with a broad exploration of the causes of dementia, means of treating it, and hopes for preventing it. Her greatest gift to readers is that of optimism that caregiving can deepen love, that dementia can be fought, and that families can be strengthened. Her book is appealing, enlightening, and inspiring. Includes appendices on dementia research; source notes; resources for caregivers; and an index.
A New York Times Book Review Editors’ Choice An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times). An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.” Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject. A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.
Focusing on theoretical, policy and practice issues which are predicted to become fundamental priorities in the near future, the contributors to this important book examine how dementia care works around the globe. They explore the theory underpinning dementia care, the applications of this theory in the latest dementia care research and how this research is influencing and shaping practice. The contributors are leading practitioners, policy influencers and researchers who analyse case studies from the UK, the USA, Canada, Australia, India, France and Malta with the aim of encouraging a dialogue and exchange of interdisciplinary initiatives and ideas. Their insights into how policy and dementia strategies are developed, and the range of approaches that can be taken in dementia care practice, are a positive step towards ensuring that the needs of people with dementia around the world are met, both now and in the future. This book makes essential reading for practitioners, researchers, policy makers and students in the field of dementia care.
A "courageous and singular book" (Andrew Solomon), Memory's Last Breath is an unsparing, beautifully written memoir -- "an intimate, revealing account of living with dementia" (Shelf Awareness). Based on the "field notes" she keeps in her journal, Memory's Last Breath is Gerda Saunders' astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders, a former university professor, nonetheless embarks on a personal investigation of the brain and its mysteries, examining science and literature, and immersing herself in vivid memories of her childhood in South Africa. "For anyone facing dementia, [Saunders'] words are truly enlightening . . . Inspiring lessons about living and thriving with dementia." -- Maria Shriver, NBC's Today Show