The 36-Hour Day, 4th edition: The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th Edition PDF
Preview The 36-Hour Day, 4th edition: The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th Edition
The 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. This page intentionally left blank 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
The list of books you might like
