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A Dignified Life: The Best Friends Approach to Alzheimer's Care: A Guide for Care Partners

A Dignified Life: The Best Friends Approach to Alzheimer's Care: A Guide for Care Partners

by Virginia Bell

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If you or someone you love is affected by Alzheimer's disease or dementia, you know the tremendous toll caregiving can take on your family. A Dignified Life offers you immediate hope and help with a more successful, positive approach to care partnering-an approach that is embraced around the world today. Present the Best Friends model of care, A Dignified Life


If you or someone you love is affected by Alzheimer's disease or dementia, you know the tremendous toll caregiving can take on your family. A Dignified Life offers you immediate hope and help with a more successful, positive approach to care partnering-an approach that is embraced around the world today. Present the Best Friends model of care, A Dignified Life teaches you the "knack" of caregiving, which translates into doing difficult things with ease. You will learn how to work from a person's strengths and become the trusted companion-the best friend-your loved one needs without sacrificing your own needs. Grounded in the latest research about dementia, this new edition offers a wealth of usable tips and problem-solving advice. Learn how to communicate effectively, redirect in positive ways, and implement many activity ideas to keep your loved one connected and engaged. A Dignified Life, Revised and Expanded, gives you the support and advice you need to transform your care partner experience, including - Daily activities for early, middle, and late stages of the disease - Effective ways to manage challenging behaviors - Practical suggestions for navigating difficult family relationships - Latest recommendations about exercise, diet, and social interactions in preventing dementia, supporting brain health, and improving quality of life - Must-know advice on advance legal and health planning - Insight into professional caregiving options (in-home, respite care, adult day services, assisted living, nursing homes) This revised edition offers caregivers and antidote to the burnout and frustration that often accompnaies the role of caring for a person with Alzheimer's and dementia. Rather than struggling through a series of frustrations and failures, A Dignified Life shows the new generation of caregivers and care partners how to bring dignity, meaning, and peace of mind to the lives of both those who have Alzheimer's and dementia, and thos

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Read an Excerpt


What's Happening?

The Experience of Alzheimer's Disease and Other Dementia

What is it like to have Alzheimer's disease and other dementia? What would it be like to be unsure of your surroundings, to have difficulty communicating, to not recognize a once-familiar face, or to be unable to do things you have always enjoyed? When you understand the world of people with dementia, you can begin to understand their experiences, develop empathy, and relate better to their situations.

The experience of Alzheimer's disease and other dementia can be like taking a trip to a foreign country where you don't speak the language. Customs are different. Deciphering a restaurant menu proves difficult; you may think you are ordering soup and end up with fish! When paying a restaurant bill with unfamiliar currency you might fear that you are being shortchanged, cheated. Tasks so easy at home are major challenges in an unfamiliar setting and can be exhausting. The person with dementia is in a foreign land all the time, as seen in Irene Hong's postcard.

Hello Friends:

Rural Taiwan is lush and green but I'm staying in the noisy city of Taipei in my grandmother's place who is 80 and sharp as a nail. One thing that might interest you is that when my Mom first came back to Taiwan after a 20 year absence, she was so disoriented that she surmised this might be what the initial stages of Alzheimer's is like. She couldn't find the right words in Taiwanese (her native language) and she'd forgotten some of the customs though everybody expected her to know her way around her 'home' country. She felt so frustrated. It is true that Alzheimer's disease is like traveling in a foreign country, isn't it?

Irene Hong, volunteer, Postcard sent to Helping Hand Day Center

Rebecca Riley was one of our early teachers about the experience of dementia. A nurse and educator, Rebecca was diagnosed with Alzheimer's disease at age 59. When she first began having difficulty teaching, she thought it was because the course content was new. Soon, she knew something was wrong with her thinking and memory, and she suspected that she might have Alzheimer's disease. Her physician later confirmed her suspicions. Rebecca taught us about the world of dementia. Following are some of her written notes describing her experience:

• Depression

• Can't say what I want

• Afraid I can't express my thoughts and words—thus I remain silent and become depressed

• I need conversation to be slowly

• It is difficult to follow conversation with so much noise

• I feel that people turn me off because I cannot express myself

• I dislike social workers, nurses, and friends who do not treat me as a real person

• It is difficult to live one day at a time

Rebecca knew that she was losing her language skills and the ability to communicate her wishes. Her writing reveals that her once-meticulous grammar was slipping. Complexity became her enemy; she could not follow the din and roar of competing conversations—calling it 'noise.' Her statement about social workers, nurses, and friends who do not treat her as a 'real person' still makes us both smile and wince. Even though her cognitive skills were in decline, she recognized that people were treating her differently. -Consequently, she expressed her anger and some resentment toward these people. Remarkably, she was trying to create a plan for the future. Her notes indicate that she was deciding to take things 'one day at a time' even if it was a struggle.

Reading these heartfelt words, you too can begin to understand the experience of Alzheimer's disease and other dementia. Without understanding this world, we cannot possibly develop successful strategies for improving the lives of our friends or loved ones with dementia.

Emotions That Accompany Alzheimer's Disease

Persons with dementia commonly experience these emotions and feelings:

• Worry and anxiety

• Frustration

• Confusion

• Loss

• Sadness

• Embarrassment

• Paranoia

• Fear

• Anger

• Isolation and loneliness


Every person's response to Alzheimer's disease or other dementia is different, but many people will experience one or more of the following emotions.

Worry and Anxiety

We all worry or become anxious at times. Parents worry and become anxious about their teenager who is not home by curfew. Families may worry about having enough money to pay all of their bills at the end of the month. Some people worry that a favorite celebrity's marriage is in trouble after reading the latest tabloid at the supermarket.

The person with dementia can become consumed by worry and anxiety. One frequent by-product of dementia is that the person cannot separate a small worry from an all-consuming concern. For example, a person with dementia may begin worrying about dark clouds in the sky seen through a window. Left unchecked, the worry can grow and wreck his or her afternoon. A spring shower could turn into a thunderstorm!

Harry Nelson was a practicing dentist when he was diagnosed with Alzheimer's disease in his mid-fifties. He was very anxious about his life and the lives of his family. He worried, when in spite of his determination to keep fit mentally, spiritually, and physically, his scores on his mental exam kept going down. He worried that he would not be able to go hiking with his grandson when he became old enough to enjoy a sport that he loved. His dreams and aspirations were on hold, and he had difficulty not being anxious about the future.

©2012. Virginia Bell, MSW and David Troxel, MPH. All rights reserved. Reprinted from A Dignified Life, The Best Friends™ Approach to Alzheimer's Care, Revised and Expanded. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442

Meet the Author

Virginia Bell, MSW, is Program Consultant for the Greater Kentucky/Southern Indiana Chapter of the Alzheimer's Association at the age of 90. She is a pioneer in the dementia care field, having founded one of the first dementia-specific adult day programs, the award-winning Helping Hand Adult Day Center, which for more than twenty-five years has been a model for other programs nationally. She has published numerous journal articles and book chapters and has coauthored five books with David Troxel. Bell has been recognized at the regional, state, and national levels for her leadership and good works, including prestigious awards from the American Society on Aging, her state of Kentucky, and the national Alzheimer's Association. She has lectured about the Best Friends™ approach in more than twenty-five countries, including the last twenty Alzheimer's Disease International conferences.

David Troxel, MPH, is a consultant on dementia care, staff development, and training for the long-term care industry. He served for a decade as President and CEO of the California Central Coast Alzheimer's Association (1994–2004) and was previously Executive Director for the Lexington/Bluegrass Chapter (KY) of the Alzheimer's Association. He sat on the Executive Board of the American Public Health Association as well as the Ethics Advisory Panel of the national Alzheimer's Association. He also has first-hand experience as a caregiver to his mother, Dorothy, during her ten-year journey through Alzheimer's disease. Troxel is in high demand as a speaker for regional and national events and is known worldwide for his writing and teaching.

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