The 36-Hour Day

by Mace, Nancy L.; Rabins, Peter V.

• ISBN13: 9780801865213
• ISBN10: 0801865212
• Format: Paperback
• Copyright: 2000-12-01
• Publisher: Johns Hopkins Univ Pr

Summary

"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

Table of Contents

Foreword	xix
Preface	xxiii
Acknowledgments	xxvii
Preface to the First Edition	xxxi
Dementia	1	(21)
What is Dementia?	9	(4)
The Person with a Dementing Illness	13	(4)
Where Do You Go from Here?	17	(5)
Getting Medical Help for the Impaired Person	22	(14)
The Evaluation of the Person with a Suspected Dementia	23	(7)
Finding Someone to Do an Evaluation	30	(1)
The Medical Treatment and Management of Dementia	31	(5)
The Physician	32	(1)
The Nurse	33	(1)
The Social Worker	34	(2)
Characteristic Problems of Dementia	36	(42)
The Brain, Behavior, and Personality: Why People with Dementia Do the Things They Do	37	(6)
Caregiving: Some General Suggestions	43	(4)
Memory Problems	47	(2)
Overreacting, or Catastrophic Reactions	49	(8)
Combativeness	57	(1)
Problems with Speech and Communication	58	(10)
Problems the Impaired Person Has in Making Himself Understood	59	(5)
Problems the Impaired Person Has in Understanding Others	64	(4)
Loss of Coordination	68	(6)
Loss of Sense of Time	74	(2)
Symptoms that Are Better Sometimes and Worse at Other Times	76	(2)
Problems in Independent Living	78	(91)
When a Person Must Give Up a Job	80	(2)
When a Person Can No Longer Manage Money	82	(2)
When a Person Can No Longer Drive Safely	84	(6)
When a Person Can No Longer Live Alone	90	(12)
When You Suspect that Someone Living Alone Is Getting Confused	91	(4)
What You Can Do	95	(1)
Moving to a New Residence	96	(6)
Problems Arising in Daily Care	102	(1)
Hazards to Watch For	102	(9)
In the House	104	(4)
Outdoors	108	(1)
In the Car	109	(1)
Smoking	109	(1)
Hunting	110	(1)
Highways and Parking Lots	110	(1)
Nutrition and Mealtimes	111	(15)
Meal Preparation	112	(1)
Problem Eating Behaviors	113	(1)
Mealtimes	114	(5)
Malnutrition	119	(1)
Weight Loss	120	(2)
Choking	122	(1)
When to Consider Tube Feeding	123	(3)
Exercise	126	(3)
Recreation	129	(5)
Meaningful Activity	133	(1)
Personal Hygiene	134	(12)
Bathing	136	(4)
Dressing	140	(1)
Grooming	141	(1)
Oral Hygiene	142	(2)
Bathroom Supplies	144	(2)
Incontinence (Wetting or Soiling)	146	(9)
Urinary Incontinence	146	(6)
Bowel Incontinence	152	(1)
Cleaning Up	152	(3)
Problems with Walking and Balance; Falling	155	(6)
Becoming Chairbound or Bedbound	158	(2)
Wheelchairs	160	(1)
Changes You Can Make at Home	161	(8)
Should Environments Be Cluttered or Bare?	166	(3)
Medical Problems	169	(85)
Pain	172	(1)
Falls and Injuries	172	(1)
Pressure Sores	173	(1)
Dehydration	174	(1)
Pneumonia	175	(1)
Constipation	175	(3)
Medications	178	(4)
Dental Problems	182	(1)
Vision Problems	183	(3)
Hearing Problems	186	(1)
Visiting the Doctor	187	(2)
If the Ill Person Must Enter the Hospital	189	(2)
Seizures, Fits, or Convulsions	191	(3)
Jerking Movements (Myoclonus)	194	(1)
The Death of the Impaired Person	194	(10)
The Cause of Death	195	(1)
Dying at Home	195	(2)
Hospice	197	(1)
Dying in the Hospital or Nursing Home	197	(1)
When Should Treatment End?	198	(1)
What Kind of Care Can Be Given at the End of Life?	199	(5)
Problems of Behavior	204	(1)
The Six R's of Behavior Management	205	(2)
Concealing Memory Loss	207	(2)
Wandering	209	(13)
Reasons Why People Wander	210	(2)
The Management of Wandering	212	(10)
Sleep Disturbances and Night Wandering	222	(4)
Worsening in the Evening	226	(2)
Losing, Hoarding, or Hiding Things	228	(2)
Rummaging in Drawers and Closets	230	(1)
Inappropriate Sexual Behavior	230	(4)
Repeating the Question	234	(1)
Repetitious Actions	235	(2)
Distractibility	237	(1)
Clinging or Persistently Following You Around	237	(2)
Complaints and Insults	239	(5)
Taking Things	244	(1)
Forgetting Telephone Calls	245	(1)
Demands	246	(3)
Stubbornness and Uncooperativeness	249	(2)
When the Sick Person Insults the Sitter	251	(1)
Using Medication to Manage Behavior	252	(2)
Problems of Mood	254	(27)
Depression	254	(3)
Complaints about Health	257	(1)
Suicide	257	(1)
Alcohol or Drug Abuse	258	(1)
Apathy and Listlessness	259	(1)
Remembering Feelings	260	(1)
Anger and Irritability	261	(2)
Anxiety, Nervousness, and Restlessness	263	(3)
False Ideas, Suspiciousness, Paranoia, and Hallucinations	266	(13)
Misinterpretation	267	(2)
Failure to Recognize People or Things (Agnosia)	269	(1)
``My Mother Is Coming for Me''	270	(1)
Suspiciousness	271	(5)
Hiding Things	276	(1)
Delusions and Hallucinations	276	(3)
Having Nothing to Do	279	(2)
Special Arrangements If You Become Ill	281	(6)
In the Event of Your Death	284	(3)
Getting Outside Help	287	(31)
Help from Friends and Neighbors	288	(4)
Finding Information and Services	292	(1)
Kinds of Services	292	(7)
Having Someone Come into Your Home	294	(1)
Adult Day Care	295	(2)
Day Hospitals	297	(1)
Short-Stay Residential Care	298	(1)
Planning in Advance for Home Care or Day Care	299	(1)
When the Confused Person Rejects the Care	300	(4)
Your Own Feelings about Getting Respite for Yourself	304	(2)
Locating Resources	306	(4)
Paying for Care	310	(3)
Should Respite Programs Mix People Who Have Different Problems?	313	(1)
Determining the Quality of Services	314	(3)
Research and Demonstration Programs	317	(1)
You and the Impaired Person as Parts of a Family	318	(33)
Changes in Roles	321	(7)
Understanding Family Conflicts	328	(4)
Division of Responsibility	329	(3)
Your Marriage	332	(1)
Coping with Role Changes and Family Conflict	333	(6)
A Family Conference	335	(4)
When You Live out of Town	339	(2)
When You Are Not the Primary Caregiver, What Can You Do to Help?	341	(2)
Caregiving and Your Job	343	(1)
Your Children	344	(7)
Teenagers	348	(3)
How Caring for an Impaired Person Affects You	351	(36)
Emotional Reactions	351	(22)
Anger	353	(5)
Embarrassment	358	(2)
Helplessness	360	(1)
Guilt	361	(4)
Laughter, Love, and Joy	365	(1)
Grief	366	(2)
Depression	368	(2)
Isolation and Feeling Alone	370	(1)
Worry	370	(1)
Being Hopeful and Being Realistic	371	(2)
Mistreating the Confused Person	373	(1)
Physical Reactions	374	(2)
Fatigue	374	(1)
Illness	375	(1)
Sexuality	376	(5)
If Your Spouse Is Impaired	377	(3)
If Your Impaired Parent Lives with You	380	(1)
The Future	381	(5)
You as a Spouse Alone	383	(3)
When the Person You Have Cared for Dies	386	(1)
Caring for Yourself	387	(23)
Take Time Out	389	(4)
Give Yourself a Present	391	(1)
Friends	391	(1)
Avoid Isolation	392	(1)
Find Additional Help If You Need It	393	(8)
Recognize the Warning Signs	394	(3)
Couseling	397	(4)
Joining with Other Families: The Alzheimer's Association	401	(5)
Support Groups	403	(1)
Excuses	404	(2)
Advocacy	406	(4)
For Children and Teenagers	410	(6)
Financial and Legal Issues	416	(16)
Your Financial Assessment	416	(7)
Potential Expenses	417	(2)
Potential Resources	419	(4)
Where to Look for the Forgetful Person's Resources	423	(4)
Legal Matters	427	(5)
Nursing Homes and Other Living Arrangements	432	(61)
General Rules for Evaluating a Care Facility	433	(1)
Moving with a Confused Person	434	(1)
Types of Living Arrangements	435	(6)
Nursing Homes and Assisted Living Facilities	441	(49)
Paying for Care	445	(2)
Payment Sources	447	(10)
Establishing the Need for Medical Care	457	(1)
The Mental Health Screening Requirement	458	(1)
Finding a Home or Other Facility	459	(14)
Nursing Home and Assisted Living Programs that Specialize in Dementia Care	473	(2)
Moving to a Nursing Home	475	(3)
Adjusting to a New Life	478	(1)
Visiting	478	(5)
Your Own Adjustment	483	(2)
When Problems Occur in the Nursing Home	485	(3)
Sexual Issues in Nursing Homes	488	(2)
The Department of Veterans Affairs (VA)	490	(1)
State Mental Hospitals	490	(3)
Brain Disorders and the Causes of Dementia	493	(17)
Dementia	493	(12)
Dementia Associated with Alcohol Abuse	496	(1)
Alzheimer Disease	497	(3)
Multi-Infarct or Vascular Dementia	500	(1)
Lewy Body Dementia	501	(1)
The Frontotemporal Dementias, Including Pick Disease	501	(1)
Depression	502	(1)
Binswanger Disease	503	(1)
AIDS	503	(2)
Other Brain Disorders	505	(5)
Delirium	505	(1)
Senility, Chronic Organic Brain Syndrome, Acute or Reversible Organic Brain Syndromes	506	(3)
Anoxia or Hypoxia	509	(1)
Research in Dementia	510	(23)
Understanding Research	511	(4)
Bogus Cures	514	(1)
Research in Multi-Infarct Dementia and Stroke	515	(1)
Research in Alzheimer Disease	516	(7)
Structural Changes in the Brain	516	(1)
Brain Cell Structure	516	(1)
Neurotransmitters	516	(1)
Abnormal Proteins	517	(2)
Transplants of Brain Tissue	519	(1)
Drug Studies	520	(1)
Metals	520	(1)
Viruses	521	(1)
Immunological Defects	522	(1)
Head Trauma	522	(1)
Epidemiology	523	(1)
Down Syndrome	523	(1)
Old Age	524	(1)
Heredity	524	(3)
Gender	527	(1)
Promising Clinical and Research Tools	528	(1)
Keeping Active	529	(1)
The Effect of Acute Illness on Dementia	530	(1)
Research into the Delivery of Services	530	(2)
Protective Factors	532	(1)
Appendix 1. Further Reading	533	(6)
Appendix 2. Organizations	539	(7)
Appendix 3. Locating Your State Office on Aging and State Nursing Home Ombudsperson	546	(9)
Appendix 4. Nursing Home Residents' Rights	555	(6)
Index	561