The 36-hour day: a family guide to caring for people with Alzheimer disease, other dementias, and memory loss in later life

1. Dementia -- What is dementia? -- The person with dementia -- Where do you go from here? -- 2. Getting medical help for the person with dementia -- The evaluation of the person with a suspected dementia -- Finding someone to do an evaluation -- The medical treatment and management of dementia -- The physician -- The nurse -- The social worker -- The geriatric care manager -- The pharmacist -- 3. Characteristic behavioral symptoms of dementia -- The brain, behavior, and personality : why people with dementia do the things they do -- Caregiving : some general suggestions -- Memory problems -- Overreacting, or catastrophic reactions -- Combativeness -- Problems with speech and communication -- Problems the person with dementia has in making himself understood -- Problems the person with dementia has in understanding others -- Loss of coordination -- Loss of sense of time -- Symptoms that are better sometimes and worse at other times -- 4. Problems in independent living -- Mild cognitive impairment -- When a person must give up a job -- When a person can no longer manage money -- When a person can no longer drive safely -- When a person can no longer live alone -- When you suspect that someone living alone is getting confused -- What you can do -- Moving to a new residence --

5. Problems arising in daily care -- Hazards to watch for -- In the house -- Outdoors -- In the car -- Highways and parking lots -- Smoking -- Hunting -- Nutrition and mealtimes -- Meal preparation -- Mealtimes -- Problem eating behaviors -- Malnutrition -- Weight loss -- Choking -- When to consider tube feeding -- Exercise -- Recreation -- Meaningful activity -- Personal hygiene -- Bathing -- Locating care supplies -- Dressing -- Grooming -- Oral hygiene -- Incontinence (wetting or soiling) -- Urinary incontinence -- Bowel incontinence -- Cleaning up -- Problems with walking and balance ; falling -- Becoming chairbound or bedbound -- Wheelchairs -- Changes you can make at home -- Should environments be cluttered or bare? -- 6. Medical problems -- Pain -- Falls and injuries -- Pressure sores -- Dehydration -- Pneumonia -- Constipation -- Medications -- Dental problems -- Vision problems -- Hearing problems -- Dizziness -- Visiting the doctor -- If the ill person must enter the hospital -- Seizures, fits, or convulsions -- Jerking movements (myoclonus) -- The death of the person with dementia -- The cause of death -- Dying at home -- Hospice -- Dying in the hospital or nursing home -- When should treatment end? -- What kind of care can be given at the end of life? --

7. Behavioral symptoms of dementia -- The six R's of behavior management -- Concealing memory loss -- Wandering -- Reasons why people wander -- The management of wandering -- Sleep disturbances and night wandering -- Worsening in the evening ("sundowning") -- Losing, hoarding, or hiding things -- Rummaging in drawers and closets -- Inappropriate sexual behavior -- Repeating the question -- Repetitious actions -- Distractibility -- Clinging or persistently following you around -- Complaints and insults -- Taking things -- Forgetting telephone calls -- Demands -- Stubbornness and uncooperativeness -- When the person with dementia insults the sitter -- Using medication to manage behavior -- 8. Symptoms that appear as changes in mood -- Depression -- Complaints about health -- Suicide -- Alcohol or drug abuse -- Apathy and listlessness -- Remembering feelings -- Anger and irritability -- Anxiety, nervousness, and restlessness -- False ideas, suspiciousness, paranoia, and hallucinations -- Misinterpretation -- Failure to recognize people or things (agnosia) -- "You are not my husband" -- "My mother is coming for me" -- Suspiciousness -- Hiding things -- Delusions and hallucinations -- Having nothing to do -- 9. Special arrangements if you become ill -- In the event of your death --

10. Getting outside help -- Help from friends and neighbors -- Finding information and services -- Kinds of services -- Having someone come into your home -- Adult day care -- Short-stay residential care -- Planning in advance for home care or day care -- When the person with dementia rejects the care -- Your own feelings about getting respite for yourself -- Locating resources -- Paying for care -- Should respite programs mix people who have different problems? -- Determining the quality of services -- Research and demonstration programs -- 11. You and the person with dementia as parts of a family -- Changes in roles -- Understanding family conflicts -- Division of responsibility -- Your marriage -- Coping with role changes and family conflict -- A family conference -- When you live out of town -- When you are not the primary caregiver, what can you do to help? -- Caregiving and your job -- Your children -- Teenagers -- 12. How caring for a person with dementia affects you -- Emotional reactions -- Anger -- Embarrassment -- Helplessness -- Guilt -- Laughter, love, and joy -- Grief -- Depression -- Isolation and feeling alone -- Worry -- Being hopeful and being realistic -- Mistreating the person with dementia -- Physical reactions -- Fatigue -- Illness -- Sexuality -- If your spouse is impaired -- If your impaired parent lives with you -- The future -- You as a spouse alone -- When the person you have cared for dies --

13. Caring for yourself -- Take time out -- Give yourself a present -- Friends -- Avoid isolation -- Find additional help if you need it -- Recognize the warning signs -- Counseling -- Joining with other families : The Alzheimer's Association -- Support groups -- Excuses -- Advocacy -- 14. For children and teenagers -- 15. Financial and legal issues -- Your Financial assessment -- Potential expenses -- Potential resources -- Where to look for the forgetful person's resources -- Legal matters -- 16. Nursing homes and other living arrangements -- Types of living arrangements -- Moving with the person with dementia -- Finding a nursing home or other residential care setting -- Paying for care -- Guidelines for selecting a nursing home or other residential care facility -- Moving to a nursing home or other residential care facility -- Adjusting to a new life -- Visiting -- Your own adjustment -- When problems occur in the nursing home or other residential care facility -- Sexual issues in nursing homes or other care facilities -- 17. Brain disorders and the causes of dementia -- Dementia -- Dementia associated with alcohol abuse -- Alzheimer disease -- Vascular (multi-infarct) dementia -- Lewy body dementia -- The frontotemporal dementias, including Pick disease -- Depression -- Binswanger disease -- HIV-AIDS -- Other brain disorders -- Delirium -- Senility, chronic organic brain syndrome, acute or reversible organic brain syndromes -- TIA -- Localized brain injuries -- Head injuries (head trauma) -- Anoxia or hypoxia -- Mild Cognitive impairment --

18. Research in dementia

Understanding research

Bogus cures

Research in vascular (multi-infarct) dementia and stroke

Research in Alzheimer disease

Structural changes in the brain

Brain cells

Neurotransmitters

Abnormal proteins

Nerve growth factors

Transplants of brain tissue

Drug studies

Metals

Prions

Immunological defects

Head trauma

Epidemiology

Down syndrome

Old Age

Heredity

Gender

Promising clinical and research tools

Keeping active

The effect of acute illness on dementia

Research into the delivery of services

Protective factors

Appendix 1. Using the Internet

Appendix 2. Organizations.