A Dignified Life: The Best Friends Approach to Alzheimer's Care - Softcover

Bell, Virginia; Troxel, David

Softcover

ISBN 10: 075730060X ISBN 13: 9780757300608

Publisher: Hci, 2002

Synopsis

Outlines a practical approach to Alzheimer's that urges caregivers to improve the lives of both patient and care provider, offering advice on how to regard an Alzheimer's sufferer as a best friend while working from their strengths. Original. 20,000 first printing.

About this title

About the Author

Virginia Bell, MSW, developed the Helping Hand Adult Day Center sponsored by the Greater Kentucky and Southern Indiana chapter of the Alzheimer's Association in Lexington, Kentucky. The award-winning facility was one of the first dementia-specific adult day programs established in this country and remains one of the best. She received her master's in social work and served on two Kentucky Governor's Task Forces studying Alzheimer's care and service delivery. A frequent and popular speaker on aging, Ms. Bell has been directly involved with the annual conference of Alzheimer's Disease International for more than a decade. David Troxel, MPH, is a recognized expert on the best practices in Alzheimer's care and is a popular keynote speaker at conferences related to Alzheimer's and aging services. Along with Virginia Bell and others, he established a statewide network of support groups and services in Kentucky for patients and their caregivers. Troxel is the executive director of the California Central Coast chapter of the Alzheimer's Association and is also the associate editor of Early Alzheimer's, an international newsletter sponsored by the California Central Coast chapter of the Alzheimer's Association.

Excerpt. © Reprinted by permission. All rights reserved.

1

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

COMMON EMOTIONS AND FEELINGS OF PERSONS WITH ALZHEIMER'S DISEASE AND OTHER DEMENTIA

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

 

Edition details

• Publisher: Hci
• Publication date: 2002
• Language: English
• ISBN 10: 075730060X
• ISBN 13: 9780757300608
• Binding: Paperback
• Edition number: 1
• Number of pages: 250