Joy A. Glenner Read online

  When Your Loved One Has Dementia

  When Your Loved One Has Dementia

  A Simple Guide for Caregivers

  Joy A. Glenner, Jean M. Stehman,

  Judith Davagnino, Margaret J. Galante,

  and Martha L. Green

  The George G. Glenner Alzheimer’s Family Centers, Inc.

  San Diego, California

  © 2005 The Johns Hopkins University Press

  All rights reserved. Published 2005

  Printed in the United States of America on acid-free paper

  9 8 7 6 5 4 3 2 1

  The Johns Hopkins University Press

  2715 North Charles Street

  Baltimore, Maryland 21218-4363

  www.press.jhu.edu

  Library of Congress Cataloging-in-Publication Data

  When your loved one has dementia : a simple guide for caregivers / Joy A.

  Glenner … [et al.].

  p. cm.

  Includes index.

  ISBN 0-8018-8113-7 (hardcover : alk. paper) — ISBN 0-8018-8114-5

  (pbk. : alk. paper)

  1. Senile dementia—Patients—Home care. 2. Senile dementia—

  Patients—Family relationships. 3. Caregivers. I. Glenner, Joy A., 1930–

  RC523.W466 2005

  362.198′976831—dc22

  2004024466

  A catalog record for this book is available from the British Library.

  Contents

  Introduction

  1. Understanding and Acceptance

  2. Preparing for the Future

  3. Communication, the Key to Quality of Life for You and Your Loved One

  4. Safety for You and Your Family Member with Dementia

  5. The Necessities of Daily Life: Getting Things Done with, Not Just for, Your Loved One

  6. Keeping Busy and Enjoying Time Together

  Glossary

  Resources

  Index

  Introduction

  The six chapters of When Your Loved One Has Dementia emphasize the importance of good communication with your family member as a method of ensuring a better quality of life for both you and your partner. A glossary is included to assist you in understanding unfamiliar words. The handbook is written in a conversational style that, we hope, will reassure and support you as you grow in your caregiving role. You can grow in this process if you try to look at it as a partnership with your ill family member and with others—friends, family members, and care professionals—who will help you in supporting roles.

  When Your Loved One Has Dementia emphasizes ongoing communication with your ill family member. We often refer to your family member as your “partner.” Throughout the course of a progressive dementing illness, regular and natural two-way verbal and nonverbal communication will help you determine care needs and may help you remain close to each other—as true partners. Remaining close to your partner and maintaining ties with family and friends can be an effective support system. If you are not close or have grown apart over the years, time as a caregiver for your partner can be a good opportunity to “mend fences.”

  In this book we also use the term patient. As the disease progresses, initiation of communication, needs assessment, and the implementation of care will become more and more your responsibility. Your partner will communicate with you through actions more than words, yet you will still need to be able to understand what he or she may be trying to convey. Knowing your partner well will help with ongoing assessment as the disease becomes more severe and conversation becomes more and more nonverbal. Words that may be unfamiliar are in italics and are found in the glossary.

  The better you understand the needs and feelings your family member expresses verbally and nonverbally, the easier the caregiving process will be and the more confident you will feel about your role as caregiver.

  When Your Loved One Has Dementia

  1 Understanding and Acceptance

  Goal: This chapter will help you identify the symptoms of a dementing illness. It will also help you understand the pathology of Alzheimer disease (AD) and the latest research on it. It will suggest ways in which you and your partner can become or remain close while adjusting to the changes that lie ahead.

  Early Warning Signs

  We all forget things once in a while, more often as we get older. Mild forgetfulness is normal. But where does “normal” end and a problem begin? It is often very difficult to tell.

  Benign forgetfulness is just what it implies: it is benign, or not harmful, and it is a normal part of aging.

  Mild cognitive impairment (MCI) means there is some decline in memory, but the person can still cope fairly well in everyday life. It is not normal aging. Many of those diagnosed with MCI decline and develop Alzheimer disease, but many do not become noticeably worse.

  Dementia is a general term meaning a global loss of intellectual functioning and normal alertness caused by disease or injury to the brain. AD is the most common cause of dementia.

  Box 1-1 lists some examples of early warning signs.

  * * *

  Box 1-1. Early Warning Signs

  The descriptions of Mr. Carpenter’s problems are examples of benign forgetfulness, mild cognitive impairment, and mild dementia.

  Benign forgetfulness

  • Mr. Carpenter is eighty years old and in good health. He has begun to be concerned, however, that he is becoming forgetful.

  • He keeps notes to himself folded in his wallet. On them he writes phone numbers he uses frequently and things he wishes to do that day. He refers to the notes frequently so he will remember tasks when he reads them. He then crosses off each one as he completes it.

  • He frequently repeats stories he has already told but usually catches himself and apologizes.

  • Mr. Carpenter does not have an abnormal memory problem. He makes adaptations to help him remember when he temporarily forgets. He still functions very well without help.

  Mild cognitive impairment (MCI)

  • Mr. Carpenter gradually forgets to read the notes in his wallet, though he continues to plan and to write them. He repeats stories without realizing he is repeating.

  • He then makes a medical appointment for a cognitive assessment because of his new concerns.

  • After the evaluation of his problems confirms MCI, Mr. Carpenter decides to move to a retirement community that provides meals and van service. His losses are now noticeable, but he is still able to assess them, and he adapts well by making appropriate lifestyle changes.

  Mild dementia

  • Mr. Carpenter has trouble driving. He gets lost frequently and avoids freeways because he cannot drive well enough anymore. When he almost hits someone with his car, he stops driving.

  • He starts forgetting ingredients when he cooks, and he burns things on the stove.

  • Mr. Carpenter may have dementia if his symptoms progress. If he becomes unable to plan ahead, regularly forgets to do routine daily activities, and forgets recent events and is unable to recall them if reminded, he may have a problem. He will probably be unable to live independently. He may decide to move to an assisted living community.

  * * *

  Understanding the Symptoms You May See

  Try to assess your partner’s symptoms objectively. This can be difficult. It is natural to want to deny or fight these changes, to “protect” someone you love. But denial or trying to correct behaviors improperly can damage your relationship and make life more stressful for both of you.

  Your objective assessment will help you and your physician obtain an accurate diagnosis and will guide you in daily life with your partner. To make an objective assessment, you must first understand and be able to identify the basic symptoms of
a dementing illness. They are the symptoms observable in everyone who has a dementing illness.

  The basic symptoms of dementia result from damage to all of the mental functions that we use in daily life. Remember, dementia is global brain damage. The symptoms are, of course, mild at first, but they become very severe if the dementia is progressive (such as with AD). They are not behavior problems. The brain damage causes these basic symptoms, and they result in difficult behavior.

  We developed a memory cue to help you remember the basic symptoms: “Mr. [or Mrs.] Palmer has dementia.” Each letter of the word PALMER stands for a symptom. The letter P helps you remember two symptoms, and so does the R; the rest of the letters stand for a single symptom (box 1-2).

  * * *

  Box 1-2. The Basic Symptoms of Dementia:

  The PALMER Memory Cue

  Perception and organization of movement

  Attention span

  Language ability

  Memory

  Emotional control

  Reasoning and judgment

  * * *

  The basic symptoms of dementia include problems with:

  1. Perception and organization of movement

  Perception is understanding or interpreting the environment. It is our understanding of what we see, hear, feel, taste, or smell. For example, a person may be able to see things very clearly and hear even very faint sounds but be unable to recognize or correctly interpret what he or she is seeing or hearing.

  Agnosia is the loss of visual perception, the inability to recognize familiar objects and surroundings.

  Mrs. Jameson rearranged the furniture. Mr. Jameson then had trouble finding his favorite chair because it was not where it used to be. When Mrs. Jameson pointed it out, guided him to it, and had him touch it, he recognized it. He had trouble with visual perception.

  Organization of movement is the ability to move ourselves and other objects about.

  Mr. Jameson also had trouble sitting in the chair. He would sometimes kneel on the chair instead of sitting or would not sit all the way down—he would lower himself part way and then get back up. When Mrs. Jameson gave him step-by-step verbal cues, guided him with her hands, and reassured him that he would not fall, he sat down. He had trouble organizing his movements correctly.

  2. Attention span

  Attention span is the amount of time we can concentrate on a task or on what is going on around us.

  Samuel loved to chop vegetables for a dinner salad each night. He would start to chop the vegetables but then would stop and walk away before they were done. His wife, Eve, decided to stay with him as he worked. Whenever he started to drift away, she reminded him that he needed to finish chopping. He then continued. She usually had to remind him two or three times. He had a very short attention span.

  3. Language ability

  Language ability is receptive and expressive. Receptive language ability is the ability to understand the meaning of oral (spoken) and written information. Expressive language ability is the ability to convey oral or written information to others. Loss of language ability is aphasia.

  Susan was looking at a photo album and motioned to her sister, April (her caregiver), to come closer and see a photo. She tried to tell April why the picture was special but became upset because she had trouble expressing what she wanted to say. She had poor expressive language ability.

  April then asked Susan questions about the picture. Susan could not understand the questions and became even more upset. She also had poor receptive language ability. April then just stated that it was a beautiful picture and that she liked it too. Susan understood this simple statement, and it did not require an answer. She calmed down.

  4. Memory

  Memory has three components: awareness, retention, and retrieval. We cannot remember anything if we are not aware of it first. We then have to retain it—or “keep it” in our brain in order to retrieve or recall it later—the process of “thinking.” Accurate memory depends on other brain functions. For example, memory will be poor if perception and attention span are compromised.

  Antonio loved to make cutting boards and other simple wood projects. He spent hours sanding and oiling or waxing projects, and he enjoyed talking to his daughter Anna about them as he worked. When she admired a finished project, however, Antonio would often say, “Who did that?” When told that he made it, he did not remember doing so but was always pleased when Anna told him he had done it. Even though he was aware of a project as he did it, he immediately forgot it. He was unable to retain and retrieve the information later. His memory was very impaired.

  5. Emotional control

  Emotional control is the ability to feel and stay relaxed, pleasant, and calm in normal daily life. We usually keep anger, anxiety, sadness, and other strong emotions at an acceptable level (not always, of course!) and display them only when we really need to. People with dementia have trouble doing this.

  Mr. Culbertson asked the family physician to prescribe a medication to control his wife Sarah’s anxiety. He was exhausted, because she became extremely anxious if he was ever out of her sight. She also was very anxious when they went out, even to the grocery store they had shopped at together for years. She became angry and frequently struck out at him if noises were too loud (such as the television or vacuum cleaner). Sarah was unable to control emotions adequately, specifically anxiety and anger.

  6. Reasoning and judgment

  Reasoning is putting thoughts together to form more complex thoughts and ideas. Judgment is the process of evaluating or comparing different thoughts and ideas to reach a conclusion. People with dementia have impaired reasoning and judgment.

  Martin has lived in the same home for fifty years and walks around the neighborhood every day. Recently he began losing his way. The local police knew him and frequently brought him home. His son Joseph lived with him and reminded him often that he might get lost and should not walk alone. Martin always became angry and told his son that he was disrespectful, even when Joseph reminded him of the specific times he had gotten lost and the police had brought him home. Martin also accused Joseph of trying to make him a prisoner. This shocked and hurt his son, but he realized that Martin did not understand due to poor reasoning and poor judgment—the inability to reach a logical conclusion. He enrolled Martin in adult day care, where he walked with others every day. Joseph no longer left his father at home alone. He also walked with him every evening.

  The Stages of Dementia

  The basic PALMER symptoms will not all grow worse at the same rate. Nevertheless, clinicians and researchers recognize at least three stages of dementia (box 1-3). Use the stages as a general guide only. For example, your partner may still have good language skills (stage 1) but may have severe memory loss and loss of emotional control (late stage 2 or even stage 3).

  Dorothy is generally a moderately impaired person with Alzheimer disease. Her basic symptoms have declined at different rates, however, and her husband, Larry, tries to keep her active in things she can still do. He simplifies or takes over tasks that she can no longer do or which frustrate her.

  * * *

  Box 1-3. The Three Stages of Irreversible and Progressive Dementia

  Stage 1. Onset, mild dementia

  Often this stage is deceptive, with:

  recent memory loss and mild loss of language ability (aphasia)

  confusion, decreased attention span

  impaired reasoning and judgment

  anxiety, depression, and withdrawal common

  noticeable difficulty with Instrumental Activities of

  Daily Living (IADLs)

  Stage 2. Middle, moderate dementia

  All symptoms of stage 1 are increased, with:

  restlessness and agitation common

  repetitive behaviors or perseveration

  disorientation in familiar places

  unsteady, stiff gait (hypertonia)

  difficulty with perception and organization of movement


  difficulty with toileting, continence care, other Activities of Daily Living (ADLs)

  some long-term memory loss

  Stage 3. Terminal, severe dementia

  Needs constant supervision and assistance, with:

  delusions and hallucinations common

  incontinence: first urinary, then fecal (incontinence of bowels)

  difficulty swallowing, causing choking and aspiration

  emaciation

  loss of response and general awareness

  * * *

  She is very social and loves to be with others. She speaks and understands others well and can carry on great simple conversations. Her language disability is very mild. She avoids personal conversations, however, because she really cannot remember who her friends are or where she has met them before. Larry stays close by at parties to make sure she is not embarrassed. She has moderate to severe short-term memory loss.

  Her long-term memory, on the other hand, is still quite good. She was a third-grade teacher for many years, and she remembers many things about her past career. The problem is that she assumes that all of the people with whom she socializes used to be in her third-grade classroom. Her reasoning ability is moderately impaired.

  Dorothy attended an Alzheimer Adult Day Care Center and became attached to a friendly male patient there named Jim. She often insisted he was her husband (a delusion), even though Larry is six feet tall and Jim was far shorter and looked nothing like him. Staff members tried to reason with her, telling her that Jim’s wife would be upset if she saw them spending so much time together. This made Dorothy very upset, and she was very hard to calm down. She had moderate to severe lack of judgment and had moderate to severely impaired emotional control. Larry and Jim’s wife now work together to ensure that their spouses do not attend the center on the same days.

  Dorothy still dresses herself with suggestions and a watchful eye from Larry. She helps prepare meals and cleans house. She loves day care, as she does every social situation. She dances beautifully to music with a staff member or fellow participant as a partner. She loves arts and crafts and cooking projects and does them beautifully. Her attention span, perception, and organization of movement are all only mildly impaired.