The Person with Alzheimer's Disease: Pathways to Understanding the Experience / Edition 1

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Overview

Few families are untouched by Alzheimer's disease or a related dementia. Moving accounts of what it is like to care for someone with this disease have already been published, as well as how-to books that offer caregivers advice and information on coping. But this book is the first to provide a comprehensive report of what it is like to have dementia oneself—the subjective experience of living with progressive memory loss.

Each chapter discusses a different aspect of having dementia, from the initial assessment and diagnosis through placement in a nursing home. The discussions are grounded in qualitative research and case studies, which convey the variable and personal nature of the experience. They seek to help clinicians, researchers, students, and caregivers (both professionals and family members) understand the experience of dementia, and thereby to promote better caregiving through a person-centered approach.

Contributors: Kathleen Kahn-Denis, Judson Retirement Community; Casey Durkin, a psychotherapist in Cleveland, Ohio; Jane Gilliard, Dementia Voice, UK; Phyllis Braudy Harris, John Carroll University; John Keady, University of Wales, UK; John Killick, University of Stirling, UK; Rebecca G. Logsdon, University of Washington; Charlie Murphy, University of Stirling, UK; Alison Phinney, University of British Columbia, Canada; Steven R. Sabat, Georgetown University; Dorothy Seman, Alzheimer's Family Care Center, Chicago; Lisa Snyder, University of California, San Diego; Jane Stansell, Alzheimer's Family Care Center, Chicago; Gloria Sterin, Shaker Heights, Ohio; Jon C. Stuckey, Messiah College; Robyn Yale, Consultant to the Alzheimer's Association, San Francisco; Rosalie Young, Wayne State University School of Medicine.

Johns Hopkins University Press

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Editorial Reviews

American Journal of Alzheimer's Disease and Other Dementias
Harris has assembled in The Person with Alzheimer's Disease a collection of contributions rich in their insights about the lived experience of persons with AD... [It] compels us to focus on potential contributions, on the persistence of selfhood and human agency, and on how the voices of those with AD can teach us powerful and important lessons.

— Stephen J. CutlerPhD

International Journal of Geriatric Psychiatry
If, like me, you believe that Alzheimer's is an illness people can live with rather than being a condition they die from, then this is the book for you. It has the potential to influence and change the experience of care by influencing and changing the practice of those who read it, who hear the voices of those involved with it and who reflect on the lessons which may be learned.

— Sean Page

Ageing and Society

It is a celebration of the spirit and the strengths of ordinary people who are faced with the challenges of AD (Alzeimher's disease) and other dementias.

American Journal of Alzheimer's Disease and Other Dementias - Stephen J. CutlerPhD

Harris has assembled in The Person with Alzheimer's Disease a collection of contributions rich in their insights about the lived experience of persons with AD... [It] compels us to focus on potential contributions, on the persistence of selfhood and human agency, and on how the voices of those with AD can teach us powerful and important lessons.

International Journal of Geriatric Psychiatry - Sean Page

If, like me, you believe that Alzheimer's is an illness people can live with rather than being a condition they die from, then this is the book for you. It has the potential to influence and change the experience of care by influencing and changing the practice of those who read it, who hear the voices of those involved with it and who reflect on the lessons which may be learned.

Canadian Journal on Aging - Christine Jonas-Simpson

This book values persons with dementia as contributing to expanding knowledge about dementia and about the meaning of living with dementia while, at the same time, it challenges the assumption that persons with dementia are empty shells and burdens to society... This book is essential reading for all health care providers and care partners who care for persons living with dementia throughout the entire journey, from diagnosis to receiving formal services. Educators, researchers, policy makers, and AD society staff and executive would also benefit greatly from reading this book... I believe this in-depth examination is important, since newer and deeper understandings of dementia, through the eyes of a person living with dementia, can transform practice and lift stigmas... This book provides an important contribution to the dementia literature, as it enriches our understanding of dementia from the perspective of the 'experts'—persons living with dementia.

From The Critics
Reviewer: Marquis D. Foreman, PhD, RN, FAAN (University of Illinois at Chicago College of Nursing)
Description: This book presents various perspectives on the personal experience of living with progressive memory loss — specifically that due to Alzheimer's disease.
Purpose: The purposes are to describe what it is like to live day-to-day with a diagnosis of Alzheimer's disease, and to identify what lessons can be learned from these accounts to improve the quality of care for these individuals and their families.
Audience: The editor indicates that the audience includes scholars and practitioners truly committed to person-centered dementia care and research.
Features: This book consists of 14 chapters in three parts: The Medical Experience; The Impact of the Diagnosis on Everyday Life; and Experiences with Formal Services. These chapters are written by both the providers of care as well as by people at various stages of Alzheimer's disease.
Assessment: This is an amazing book! The personal accounts of those either living with a diagnosis of Alzheimer's disease or intimately providing care to such individuals are overwhelming. I was greatly moved by the very personal and intimate accounts of the difficulties and challenges presented by progressive memory loss. More important is the effort to take these experiences and learn from them. This book is critical for people newly diagnosed and their family and friends, and all of us who provide care to these families.
From The Critics
In order to provide insight into the daily lives of Alzheimer's patients, Harris (aging studies and sociology, John Carroll U.) presents an overview of the subjective experience of living with progressive memory loss. Relying primarily on interviews and surveys with patients, 14 chapters look at Alzheimer's patients' experience with medical institutions, daily living, and formal services. The focus throughout is on the maintenance of selfhood and quality of life. Annotation c. Book News, Inc., Portland, OR (booknews.com)

5 Stars! from Doody
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Product Details

  • ISBN-13: 9780801868771
  • Publisher: Johns Hopkins University Press
  • Publication date: 5/28/2002
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 336
  • Sales rank: 931,546
  • Product dimensions: 6.00 (w) x 9.00 (h) x 0.70 (d)

Meet the Author

Phyllis Braudy Harris is a professor in the Department of Sociology and director of the Aging Studies Program at John Carroll University. She is co-editor of Dementia: The International Journal of Social Research and Practice.

Johns Hopkins University Press

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Table of Contents

Contents:



List of Contributors

Acknowledgments

Introduction - Phyllis Braudy Harris

Prologue: Notes from The Crying Room - Gloria J. Stern



Part 1: The Medical Experience

1 Testing Times: The Experience of Neuropsychological Assessment for People with Suspected Alzheimer's Disease - John Keady and Jane Gilliard



2 Medical Experiences and Concerns of People with Alzheimer's Disease - Rosalie F. Young



Part 2: The Impact of the Diagnosis on Everyday Life

3 Living with the Symptoms of Alzheimer's Disease - Alison Phinney

4 Making the Most of Everyday: Quality of Life - Rebecca G. Logsdon

5 Selfhood and Alzheimer's Disease - Steven R. Sabat

6 Social and Family Relationships: Establishing and Maintaining Connections - Lisa Snyder

7 Meaningful Communication throughout the Journey: Clinical Observations - Dorothy Seman

8 Connecting to the Spirit - Jon C. Stuckey

9 Building Resilience through Coping and Adapting - Phyllis Braudy Harris and Casey



Part 3: Experiences with Fornal Services

10 The Experience of People with Dementia in Community Services - Charlie Murphy

11 Volunteerism: Contributions by Persons with Alzheimer's Disease - Jane Stansell

12 The Experience of Support Groups for Persons with Early-Stage Alzheimer's Disease and Their Families - Robyn Yale and Lisa Snyder

13 The Person with Dementia and Artwork: Art Therapy - Kathleen Kahn-Denis

14 "I Can't Place This Place at All": The Nursing Home Experience - John Killick



Index

Johns Hopkins University Press

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