Cover image for The 36-hour day : a family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life
The 36-hour day : a family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life
Mace, Nancy L.
Personal Author:
Third edition.
Publication Information:
Baltimore : Johns Hopkins University Press, 1999.
Physical Description:
xx, 339 pages ; 24 cm.
Added Author:

Format :


Call Number
Material Type
Home Location
Item Holds
RC523 .M33 1999 Adult Non-Fiction Central Closed Stacks
RC523 .M33 1999 Adult Non-Fiction Central Closed Stacks
RC523 .M33 1999 Adult Non-Fiction Open Shelf
RC523 .M33 1999 Adult Non-Fiction Open Shelf
RC523 .M33 1999 Adult Non-Fiction Open Shelf

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"I welcome with enthusiasm the third edition of this book for families and friends of patients with dementing illnesses. It has served well in its prior appearances and should accomplish even more with this edition." -- Paul R. McHugh, M.D., in the foreword Through two editions, this best-selling book has remained the "bible" for families who are giving care to people with Alzheimer disease. The 36-Hour Day has offered comfort and support to millions of people in North America and, in translations and adapted editions, throughout the rest of the world. For this third edition, the authors have retained the structure, scope, and purpose of the original book, while thoroughly updating chapters to reflect the latest medical research and the current delivery of care. Topics that have been added or extensively revised include: Updated terminology and statistics ? New material on the evaluation of persons with dementia ? Updated changes in laws on driving ? A new section on hospice care ? New information on assisted living facilities and financing care ? Information on other types of dementia ? The latest findings on eating and nutrition ? New medical research in areas such as drugs, genetics, and diagnostic tests. The revised appendices include: New bibliographic references ? websites ? Updated addresses of associations and state offices. Praise for previous editions: "The best guide of its kind." -- Chicago Sun Times "An excellent book for families who are caring for persons with dementia... A book that physicians can confidently recommend to the families of their patients." -- Journal of the American Medical Association "Excellent guidance and clear information of a kind that the family needs... The authors offer the realistic advice that sometimes it is better to concede the patient's frailties than to try to do something about them, and that a compassionate sense of humor often helps." -- New York Times "An excellent, practical manual for families and professionals involved in the care of persons with progressive illnesses... The book is specific and thought-provoking, and it will be helpful to anyone even remotely involved with an 'impaired' person... Highly recommended, especially for public and nursing libraries." -- Library Journal " The 36-Hour Day has served its readers well. The revised edition should be even more useful both to family caregivers and professional health care providers." -- HMO Practice "The reader who is familiar with the first edition will recognize the strengths that continue in the revised edition -- numerous case examples, practical advice, thoroughness of coverage, and communication of caring and humane attitudes while presenting information that may be sensitive and upsetting to families." -- Clinical Gerontologist

Reviews 1

Library Journal Review

It has been estimated that five percent of older people suffer from severe intellectual impairment. So these two eloquent and readable guides will be much in demand as the number of families facing the challenge of caring for a relative with some form of dementing illness continues to grow. First published in 1981, The 36-Hour Day follows the format of the previous two editions but has been thoroughly updated to incorporate new information on the latest research, several drugs that hold promise, and genetic aspects of Alzheimer's. The heart of the guide remains unchanged, focusing on helping families cope with this progressive and irreversible disease. Besides tips on how to care for the demented during the various stages of the disease (for example, place a picture of a toilet on the bathroom door), the text discusses the different kinds of help available and how to seek it. Financial and legal issues are well covered, while sections on nursing homes and other alternative living arrangements provide advice and practical suggestions. Appendixes list recent books, videos, web sites, and U.S. and international organizations. The thrust of GentlecareR is a well-argued plea for a radical change in the way we care for Alzheimer's patients. In outlining her program, Jones states that this rethinking involves people, physical space, and individualized programs. Everyone in the physical plant, from maintenance worker to director, belongs to the care-giving team, as do family members and volunteers. Only when impaired persons can no longer perform for themselves a task like feeding themselves or dressing should it be done for them. Care should concentrate on what can be done, not what cannot. Because her emphasis is on the need for a comprehensive program of care and concentrates more on the institutional setting, Jones does not provide as many practical suggestions or the depth of advice for home care that Mace and Rabins do. Rather, her book describes how facilities can be designed and staffs trained to optimize the quality of life for patients. Both titles are highly recommended: Rabins and Mace for the practical help and advice, Jones for her eloquent presentation of a comprehensive program that treats patients with dignity.AJodith Janes, Cleveland Clinic Fdn. (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

Table of Contents

Forewordp. xv
Prefacep. xvii
Acknowledgmentsp. xix
Preface to the First Editionp. xxi
1 Dementiap. 1
What Is Dementia?p. 5
The Person with a Dementing Illnessp. 7
Where Do You Go from Here?p. 10
2 Getting Medical Help for the Impaired Personp. 13
The Evaluation of the Person with a Suspected Dementiap. 13
Finding Someone to Do an Evaluationp. 17
The Medical Treatment and Management of Dementiap. 18
The Physicianp. 18
The Nursep. 19
The Social Workerp. 20
3 Characteristic Problems of Dementiap. 22
The Brain, Behavior, and Personality: Why People with Dementia Do the Things They Dop. 22
Caregiving: Some General Suggestionsp. 26
Memory Problemsp. 28
Overreacting, or Catastrophic Reactionsp. 29
Combativenessp. 34
Problems with Speech and Communicationp. 34
Problems the Impaired Person Has in Making Himself Understoodp. 35
Problems the Impaired Person Has in Understanding Othersp. 37
Loss of Coordinationp. 40
Loss of Sense of Timep. 43
Symptoms That Are Better Sometimes and Worse at Other Timesp. 44
4 Problems in Independent Livingp. 46
When a Person Must Give Up a Jobp. 47
When a Person Can No Longer Manage Moneyp. 48
When a Person Can No Longer Drive Safelyp. 49
When a Person Can No Longer Live Alonep. 53
When You Suspect that Someone Living Alone Is Getting Confusedp. 53
What You Can Dop. 55
Moving to a New Residencep. 56
5 Problems Arising in Daily Carep. 60
Hazards to Watch Forp. 60
In the Housep. 61
Outdoorsp. 63
In the Carp. 64
Smokingp. 64
Huntingp. 64
Highways and Parking Lotsp. 65
Nutrition and Mealtimesp. 65
Meal Preparationp. 65
Problem Eating Behaviorsp. 66
Mealtimesp. 67
Malnutritionp. 70
Weight Lossp. 70
Chokingp. 71
When to Consider Tube Feedingp. 72
Exercisep. 74
Recreationp. 75
Meaningful Activityp. 78
Personal Hygienep. 78
Bathingp. 80
Dressingp. 81
Groomingp. 82
Oral Hygienep. 83
Bathroom Suppliesp. 84
Incontinence (Wetting or Soiling)p. 85
Urinary Incontinencep. 85
Bowel Incontinencep. 88
Cleaning Upp. 89
Problems with Walking and Balance; Fallingp. 90
Becoming Chairbound or Bedboundp. 92
Wheelchairsp. 93
Changes You Can Make at Homep. 94
Should Environments Be Cluttered or Bare?p. 96
6 Medical Problemsp. 99
Painp. 100
Falls and Injuriesp. 101
Pressure Soresp. 101
Dehydrationp. 102
Pneumoniap. 102
Constipationp. 103
Medicationsp. 104
Dental Problemsp. 106
Vision Problemsp. 107
Hearing Problemsp. 108
Visiting the Doctorp. 109
If the Ill Person Must Enter the Hospitalp. 110
Seizures, Fits, or Convulsionsp. 112
Jerking Movements (Myoclonus)p. 113
The Death of the Impaired Personp. 113
The Cause of Deathp. 113
Dying at Homep. 114
Hospicep. 115
Dying in the Hospital or Nursing Homep. 115
When Should Treatment End?p. 115
What Kind of Care Can Be Given at the End of Life?p. 116
7 Problems of Behaviorp. 119
The Six R's of Behavior Managementp. 119
Concealing Memory Lossp. 121
Wanderingp. 122
Reasons Why People Wanderp. 122
The Management of Wanderingp. 124
Sleep Disturbances and Night Wanderingp. 129
Worsening in the Eveningp. 131
Losing, Hoarding, or Hiding Thingsp. 133
Rummaging in Drawers and Closetsp. 133
Inappropriate Sexual Behaviorp. 134
Repeating the Questionp. 136
Repetitious Actionsp. 137
Distractibilityp. 137
Clinging or Persistently Following You Aroundp. 138
Complaints and Insultsp. 139
Taking Thingsp. 142
Forgetting Telephone Callsp. 142
Demandsp. 143
Stubbornness and Uncooperativenessp. 145
When the Sick Person Insults the Sitterp. 146
Using Medication to Manage Behaviorp. 147
8 Problems of Moodp. 148
Depressionp. 148
Complaints about Healthp. 149
Suicidep. 150
Alcohol or Drug Abusep. 150
Apathy and Listlessnessp. 151
Remembering Feelingsp. 151
Anger and Irritabilityp. 152
Anxiety, Nervousness, and Restlessnessp. 153
False Ideas, Suspiciousness, Paranoia, and Hallucinationsp. 155
Misinterpretationp. 155
Failure to Recognize People or Things (Agnosia)p. 156
"My Mother Is Coming for Me"p. 157
Suspiciousnessp. 158
Hiding Thingsp. 160
Delusions and Hallucinationsp. 161
Having Nothing to Dop. 162
9 Special Arrangements If You Become IIIp. 164
In the Event of Your Deathp. 165
10 Getting Outside Helpp. 168
Help from Friends and Neighborsp. 168
Finding Information and Servicesp. 169
Kinds of Servicep. 171
Having Someone Come into Your Homep. 172
Adult Day Carep. 172
Day Hospitalsp. 174
Short-Stay Residential Carep. 174
Planning in Advance for Home Care or Day Carep. 174
When the Confused Person Rejects the Carep. 175
Your Own Feelings about Getting Respite for Yourselfp. 177
Locating Resourcesp. 179
Paying for Carep. 181
Should Respite Programs Mix People Who Have Different Problems?p. 183
Determining the Quality of Servicesp. 183
Research and Demonstration Programsp. 185
11 You and the Impaired Person as Parts of a Familyp. 186
Changes in Rolesp. 188
Understanding Family Conflictsp. 191
Division of Responsibilityp. 192
Your Marriagep. 194
Coping with Role Changes and Family Conflictp. 194
A Family Conferencep. 196
When You Live out of Townp. 198
When You Are Not the Primary Caregiver, What Can You Do to Help?p. 199
Caregiving and Your Jobp. 200
Your Childrenp. 201
Teenagersp. 203
12 How Caring for an Impaired Person Affects Youp. 205
Emotional Reactionsp. 205
Angerp. 206
Embarrassmentp. 209
Helplessnessp. 210
Guiltp. 210
Laughter, Love, and Joyp. 213
Griefp. 214
Depressionp. 215
Isolation and Feeling Alonep. 216
Worryp. 216
Being Hopeful and Being Realisticp. 217
Mistreating the Confused Personp. 217
Physical Reactionsp. 218
Fatiguep. 218
Illnessp. 219
Sexualityp. 220
If Your Spouse Is Impairedp. 220
If Your Impaired Parent Lives with Youp. 222
The Futurep. 222
You as a Spouse Alonep. 223
When the Person You Have Cared for Diesp. 225
13 Caring for Yourselfp. 226
Take Time Outp. 227
Give Yourself a Presentp. 228
Friendsp. 228
Avoid Isolationp. 229
Find Additional Help If You Need Itp. 230
Recognize the Warning Signsp. 230
Counselingp. 232
Joining with Other Families: The Alzheimer's Associationp. 234
Support Groupsp. 235
Excusesp. 236
Advocacyp. 237
14 For Children and Teenagersp. 239
15 Financial and Legal Issuesp. 243
Your Financial Assessmentp. 243
Potential Expensesp. 244
Potential Resourcesp. 245
Where to Look for the Forgetful Person's Resourcesp. 247
Legal Mattersp. 249
16 Nursing Homes and Other Living Arrangementsp. 253
General Rules for Evaluating a Care Facilityp. 253
Moving with a Confused Personp. 254
Types of Living Arrangementsp. 255
Nursing Homes and Assisted Living Facilitiesp. 258
Paying for Carep. 260
Payment Sourcesp. 261
Establishing the Need for Medical Carep. 267
The Mental Health Screening Requirementp. 268
Finding a Home or Other Facilityp. 268
Nursing Home and Assisted Living Programs that Specialize in Dementia Carep. 276
Moving to a Nursing Homep. 277
Adjusting to a New Lifep. 279
Visitingp. 279
Your Own Adjustmentp. 281
When Problems Occur in the Nursing Homep. 283
Sexual Issues in Nursing Homesp. 284
The Department of Veterans Affairs (VA)p. 286
State Mental Hospitalsp. 286
17 Brain Disorders and the Causes of Dementiap. 288
Dementiap. 288
Dementia Associated with Alcohol Abusep. 290
Alzheimer Diseasep. 290
Multi-Infarct or Vascular Dementiap. 292
Lewy Body Dementiap. 292
The Frontotemporal Dementias, Including Pick Diseasep. 293
Depressionp. 293
Binswanger Diseasep. 294
AIDSp. 294
Other Brain Disordersp. 295
Deliriump. 295
Senility, Chronic Organic Brain Syndrome, Acute or Reversible Organic Brain Syndromesp. 296
Anoxia or Hypoxiap. 297
18 Research in Dementiap. 298
Understanding Researchp. 299
Bogus Curesp. 300
Research in Multi-Infarct Dementia and Strokep. 301
Research in Alzheimer Diseasep. 301
Structural Changes in the Brainp. 301
Brain Cell Structurep. 301
Neurotransmittersp. 302
Abnormal Proteinsp. 302
Transplants of Brain Tissuep. 303
Drug Studiesp. 304
Metalsp. 304
Virusesp. 304
Immunological Defectsp. 305
Head Traumap. 305
Epidemiologyp. 305
Down Syndromep. 306
Old Agep. 306
Heredityp. 306
Genderp. 308
Promising Clinical and Research Toolsp. 308
Keeping Activep. 309
The Effect of Acute Illness on Dementiap. 310
Research into the Delivery of Servicesp. 310
Protective Factorsp. 311
Appendix 1. Further Readingp. 313
Appendix 2. Organizationsp. 317
Appendix 3. Locating Your State Office on Aging and State Nursing Home Ombudspersonp. 322
Appendix 4. Nursing Home Residents' Rightsp. 328
Indexp. 333