Table Of ContentThe 36-Hour Day
Nancy L. Mace, M.A.
is retired. She was a consultant to and member of the board
of directors of the Alzheimer’s Association, and an assistant
in psychiatry and coordinator of the T. Rowe and Eleanor
Price Teaching Service of the Department of Psychiatry and
Behavioral Sciences of the Johns Hopkins University School
of Medicine.
Peter V. Rabins, M.D., M.P.H.
is professor of psychiatry, with joint appointments in medi-
cine, mental health, and health policy and management;
co-director of the Division of Geriatric Psychiatry and Neuro-
psychiatry; and director of the T. Rowe and Eleanor Price
Teaching Service of the Department of Psychiatry and
Behavioral Sciences of the Johns Hopkins University School
of Medicine.
A Johns Hopkins Press Health Book
The
36-Hour
Day
A Family Guide to Caring for
People with Alzheimer Disease,
Other Dementias, and
Memory Loss in Later Life
FOURTH EDITION
THE JOHNS HOPKINS UNIVERSITY PRESS
Baltimore
∫ 1981, 1991, 1999, 2006 The Johns Hopkins University Press
All rights reserved. Published 2006
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
Words from ‘‘Joy Is Like the Rain’’ by Sister Miriam Therese Winter
∫ 1965 by Medical Mission Sisters, Philadelphia, Pa.
Reprinted by permission of Vanguard Music Corp.,
1595 Broadway, New York, N.Y. 10019
Further reproduction prohibited
Library of Congress Cataloging-in-Publication Data
Mace, Nancy L.
The 36-hour day : a family guide to caring for people with Alzheimer disease,
other dementias, and memory loss in later life / Nancy L. Mace, Peter V. Rabins. —
4th ed.
p.
cm. — (A Johns Hopkins Press health book)
Includes index.
ISBN 0-8018-8508-6 (hardcover : alk. paper)
ISBN 0-8018-8509-4 (pbk. : alk. paper)
1. Alzheimer’s disease—Patients—Home care.
2. Senile dementia—Patients—
Home care.
I. Rabins, Peter V.
II. Title.
III. Title: Thirty-six hour day.
IV. Series.
RC523.M33
2006
362.196%831—dc22
2006009627
A catalog record for this book is available from the British Library.
This book is dedicated to everyone
who gives a ‘‘36-hour day’’ to the care
of a person with dementia.
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Contents
Foreword
xvii
Preface
xix
Acknowledgments
xxi
1 Dementia
1
What Is Dementia?
5
The Person with Dementia
7
Where Do You Go from Here?
9
2 Getting Medical Help for the Person with
Dementia
11
The Evaluation of the Person with a Suspected Dementia
12
Finding Someone to Do an Evaluation
15
The Medical Treatment and Management of Dementia
16
The Physician
16
The Nurse
17
The Social Worker
18
The Geriatric Care Manager
19
The Pharmacist
19
3 Characteristic Behavioral Symptoms of Dementia
20
The Brain, Behavior, and Personality: Why People with
Dementia Do the Things They Do
20
Caregiving: Some General Suggestions
23
Memory Problems
26
Overreacting, or Catastrophic Reactions
27
viii
Contents
Combativeness
31
Problems with Speech and Communication
32
Problems the Person with Dementia Has
in Making Himself Understood
33
Problems the Person with Dementia Has
in Understanding Others
35
Loss of Coordination
38
Loss of Sense of Time
41
Symptoms That Are Better Sometimes and Worse at Other
Times
42
4 Problems in Independent Living
44
Mild Cognitive Impairment
44
When a Person Must Give Up a Job
46
When a Person Can No Longer Manage Money
47
When a Person Can No Longer Drive Safely
48
When a Person Can No Longer Live Alone
52
When You Suspect That Someone Living
Alone Is Getting Confused
52
What You Can Do
55
Moving to a New Residence
55
5 Problems Arising in Daily Care
59
Hazards to Watch For
59
In the House
60
Outdoors
63
In the Car
64
Highways and Parking Lots
64
Smoking
64
Hunting
65
Nutrition and Mealtimes
65
Meal Preparation
66
Mealtimes
66
Problem Eating Behaviors
68
Malnutrition
70
Weight Loss
70
Choking
71
When to Consider Tube Feeding
72
Contents
ix
Exercise
74
Recreation
75
Meaningful Activity
78
Personal Hygiene
78
Bathing
80
Locating Care Supplies
82
Dressing
82
Grooming
83
Oral Hygiene
84
Incontinence (Wetting or Soiling)
85
Urinary Incontinence
85
Bowel Incontinence
89
Cleaning Up
89
Problems with Walking and Balance; Falling
91
Becoming Chairbound or Bedbound
92
Wheelchairs
94
Changes You Can Make at Home
94
Should Environments Be Cluttered or Bare?
96
6 Medical Problems
98
Pain
100
Falls and Injuries
100
Pressure Sores
101
Dehydration
101
Pneumonia
102
Constipation
102
Medications
103
Dental Problems
106
Vision Problems
107
Hearing Problems
108
Dizziness
109
Visiting the Doctor
109
If the Ill Person Must Enter the Hospital
110
Seizures, Fits, or Convulsions
111
Jerking Movements (Myoclonus)
113
The Death of the Person with Dementia
113
The Cause of Death
113
Dying at Home
114
x
Contents
Hospice
114
Dying in the Hospital or Nursing Home
115
When Should Treatment End?
115
What Kind of Care Can Be Given at the End of Life?
116
7 Behavioral Symptoms of Dementia
119
The Six R’s of Behavior Management
119
Concealing Memory Loss
121
Wandering
122
Reasons That People Wander
122
The Management of Wandering
124
Sleep Disturbances and Night Wandering
130
Worsening in the Evening (‘‘Sundowning’’)
133
Losing, Hoarding, or Hiding Things
134
Rummaging in Drawers and Closets
135
Inappropriate Sexual Behavior
135
Repeating the Question
137
Repetitious Actions
138
Distractibility
139
Clinging or Persistently Following You Around
139
Complaints and Insults
140
Taking Things
143
Forgetting Telephone Calls
143
Demands
144
Stubbornness and Uncooperativeness
146
When the Person with Dementia Insults the Sitter
146
Using Medication to Manage Behavior
148
8 Symptoms That Appear as Changes in Mood
149
Depression
149
Complaints about Health
150
Suicide
151
Alcohol or Drug Abuse
151
Apathy and Listlessness
152
Remembering Feelings
152
Anger and Irritability
153
Anxiety, Nervousness, and Restlessness
154
Contents
xi
False Ideas, Suspiciousness, Paranoia, and Hallucinations
156
Misinterpretation
156
Failure to Recognize People or Things (Agnosia)
157
‘‘You Are Not My Husband’’
158
‘‘My Mother Is Coming for Me’’
158
Suspiciousness
159
Hiding Things
161
Delusions and Hallucinations
161
Having Nothing to Do
163
9 Special Arrangements If You Become Ill
164
In the Event of Your Death
165
10 Getting Outside Help
168
Help from Friends and Neighbors
168
Finding Information and Services
169
Kinds of Services
171
Having Someone Come into Your Home
172
Adult Day Care
172
Short-Stay Residential Care
174
Planning in Advance for Home Care or Day Care
174
When the Person with Dementia Rejects the Care
175
Your Own Feelings about Getting Respite for Yourself
177
Locating Resources
179
Paying for Care
181
Should Respite Programs Mix People Who Have Different
Problems?
183
Determining the Quality of Services
184
Research and Demonstration Programs
185
11 You and the Person with Dementia as Parts of a
Family
186
Changes in Roles
188
Understanding Family Conflicts
191
Division of Responsibility
192
Your Marriage
194
Coping with Role Changes and Family Conflict
194
A Family Conference
196
xii
Contents
When You Live out of Town
198
When You Are Not the Primary Caregiver, What Can You Do
to Help?
199
Caregiving and Your Job
200
Your Children
201
Teenagers
203
12 How Caring for a Person with Dementia Affects
You
205
Emotional Reactions
205
Anger
206
Embarrassment
209
Helplessness
210
Guilt
210
Laughter, Love, and Joy
213
Grief
213
Depression
215
Isolation and Feeling Alone
216
Worry
216
Being Hopeful and Being Realistic
216
Mistreating the Person with Dementia
217
Physical Reactions
218
Fatigue
218
Illness
219
Sexuality
220
If Your Spouse Is Impaired
220
If Your Impaired Parent Lives with You
222
The Future
222
You as a Spouse Alone
223
When the Person You Have Cared for Dies
225
13 Caring for Yourself
226
Take Time Out
227
Give Yourself a Present
228
Friends
228
Avoid Isolation
229
Find Additional Help If You Need It
230
Contents
xiii
Recognize the Warning Signs
230
Counseling
232
Joining with Other Families: The Alzheimer’s Association
234
Support Groups
234
Excuses
235
Advocacy
236
14 For Children and Teenagers
238
15 Financial and Legal Issues
242
Your Financial Assessment
242
Potential Expenses
243
Potential Resources
244
Where to Look for the Forgetful Person’s Resources
247
Legal Matters
249
16 Nursing Homes and Other Living Arrangements
253
Types of Living Arrangements
254
Moving with the Person with Dementia
257
Finding a Nursing Home or Other Residential Care Setting
263
Paying for Care
265
Guidelines for Selecting a Nursing Home or Other Residential
Care Facility
267
Moving to a Nursing Home or Other Residential Care Facility
272
Adjusting to a New Life
274
Visiting
274
Your Own Adjustment
277
When Problems Occur in the Nursing Home or Other Residential
Care Facility
278
Sexual Issues in Nursing Homes or Other Care Facilities
280
17 Brain Disorders and the Causes of Dementia
282
Dementia
282
Dementia Associated with Alcohol Abuse
284
Alzheimer Disease
284
Vascular (Multi-Infarct) Dementia
286
Lewy Body Dementia
286
The Frontotemporal Dementias, Including Pick Disease
287
xiv
Contents
Depression
287
Binswanger Disease
288
HIV-AIDS
288
Other Brain Disorders
289
Delirium
289
Senility, Chronic Organic Brain Syndrome, Acute or Reversible
Organic Brain Syndromes
290
TIA
290
Localized Brain Injuries
290
Head Injuries (Head Trauma)
291
Anoxia or Hypoxia
291
Mild Cognitive Impairment
292
18 Research in Dementia
293
Understanding Research
293
Bogus Cures
295
Research in Vascular (Multi-Infarct) Dementia and Stroke
296
Research in Alzheimer Disease
296
Structural Changes in the Brain
296
Brain Cells
296
Neurotransmitters
297
Abnormal Proteins
297
Nerve Growth Factors
298
Transplants of Brain Tissue
298
Drug Studies
299
Metals
299
Prions
299
Immunological Defects
300
Head Trauma
300
Epidemiology
300
Down Syndrome
301
Old Age
301
Heredity
301
Gender
303
Promising Clinical and Research Tools
303
Keeping Active
304
The Effect of Acute Illness on Dementia
305
