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A Dignified Life, Revised and Expanded: The Best Friends Approach to Alzheimer's Care: A Guide for Care Partnersby Virginia Bell
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.
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:
• 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
• 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
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