The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (A Johns Hopkins Press Health Book)

400 Pages·2000·1.94 MB·English

by  Nancy L. Mace

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 hygiene, and health policy and management,
director of the geriatric neuropsychiatry section, 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
∫ 1981, 1991, 1999 The Johns Hopkins University Press
All rights reserved. First edition 1981
Third edition 1999. Large print edition 2000
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 will be found
at the end of this book.
A catalog record for this book is available from the British Library.
ISBN 0-8018-6521-2 (pbk.—large print)
This book is dedicated to everyone
who gives a ‘‘36-hour day’’ to the care
of a person with a dementing illness.

Contents
Foreword xix
Preface xxiii
Acknowledgments xxvii
Preface to the First Edition xxxi
1 Dementia 1
What Is Dementia? 9
The Person with a Dementing Illness 13
Where Do You Go from Here? 17
2 Getting Medical Help for the Impaired Person 22
The Evaluation of the Person with a Suspected Dementia 23
Finding Someone to Do an Evaluation 30
The Medical Treatment and Management of Dementia 31
The Physician 32
The Nurse 33
The Social Worker 34
viii / CONTENTS
3 Characteristic Problems of Dementia 36
The Brain, Behavior, and Personality: Why People with
Dementia Do the Things They Do 37
Caregiving: Some General Suggestions 43
Memory Problems 47
Overreacting, or Catastrophic Reactions 49
Combativeness 57
Problems with Speech and Communication 58
Problems the Impaired Person Has in Making Himself
Understood 59
Problems the Impaired Person Has in Understanding
Others 64
Loss of Coordination 68
Loss of Sense of Time 74
Symptoms That Are Better Sometimes and Worse at Other
Times 76
4 Problems in Independent Living 78
When a Person Must Give Up a Job 80
When a Person Can No Longer Manage Money 82
When a Person Can No Longer Drive Safely 84
When a Person Can No Longer Live Alone 90
When You Suspect that Someone Living Alone Is Getting
Confused 91
What You Can Do 95
Moving to a New Residence 96
CONTENTS / ix
5 Problems Arising in Daily Care 102
Hazards to Watch For 102
In the House 104
Outdoors 108
In the Car 109
Smoking 109
Hunting 110
Highways and Parking Lots 110
Nutrition and Mealtimes 111
Meal Preparation 112
Problem Eating Behaviors 113
Mealtimes 114
Malnutrition 119
Weight Loss 120
Choking 122
When to Consider Tube Feeding 123
Exercise 126
Recreation 129
Meaningful Activity 133
Personal Hygiene 134
Bathing 136
Dressing 140
Grooming 141
Oral Hygiene 142
Bathroom Supplies 144
Incontinence (Wetting or Soiling) 146
Urinary Incontinence 146
Bowel Incontinence 152
Cleaning Up 152
x / CONTENTS
Problems with Walking and Balance; Falling 155
Becoming Chairbound or Bedbound 158
Wheelchairs 160
Changes You Can Make at Home 161
Should Environments Be Cluttered or Bare? 166
6 Medical Problems 169
Pain 172
Falls and Injuries 172
Pressure Sores 173
Dehydration 174
Pneumonia 175
Constipation 175
Medications 178
Dental Problems 182
Vision Problems 183
Hearing Problems 186
Visiting the Doctor 187
If the Ill Person Must Enter the Hospital 189
Seizures, Fits, or Convulsions 191
Jerking Movements (Myoclonus) 194
The Death of the Impaired Person 194
The Cause of Death 195
Dying at Home 195
Hospice 197
Dying in the Hospital or Nursing Home 197
When Should Treatment End? 198
What Kind of Care Can Be Given at the End of Life? 199
CONTENTS / xi
7 Problems of Behavior 204
The Six R’s of Behavior Management 205
Concealing Memory Loss 207
Wandering 209
Reasons Why People Wander 210
The Management of Wandering 212
Sleep Disturbances and Night Wandering 222
Worsening in the Evening 226
Losing, Hoarding, or Hiding Things 228
Rummaging in Drawers and Closets 230
Inappropriate Sexual Behavior 230
Repeating the Question 234
Repetitious Actions 235
Distractibility 237
Clinging or Persistently Following You Around 237
Complaints and Insults 239
Taking Things 244
Forgetting Telephone Calls 245
Demands 246
Stubbornness and Uncooperativeness 249
When the Sick Person Insults the Sitter 251
Using Medication to Manage Behavior 252
8 Problems of Mood 254
Depression 254
Complaints about Health 257
Suicide 257
Alcohol or Drug Abuse 258
Apathy and Listlessness 259