The 36-hour day: a family guide to caring for people who have alzheimer disease, related dementias, and memory loss

1. Dementia. What is dementia? The person who has dementia Where do you go from here? 2. Getting medical help for the person who has dementia. The evaluation of the person with a suspected dimentia Finding someone to do an evaluation The medical treatment and management of dimentia : The physician ; The nurse ; The social worker ; The geriatric care manager ; The pharmacist 3. Characteristic behavioral symptoms in people who have dementia. The brain, behavior, and personality: why people who have dementia do the things they do Caregiving: some general suggestions Menory 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 : Managing the early stages of dementia 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 developing dementia ; 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 bedfast ; 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 that 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 ("shadowing") 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 who has 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 who has 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 has dementia ; 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 who has 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. Preventing or delaying cognitive decline. Normal changes : General mental and physical health

Lifestyle factors : Physical exercise ; Diet

Potential treatments and cures ; Mental exercise ; Medications and vitamins

Limiting exposure to toxic chemicals : Aluminum

Head injury

18. Brain disorders and the causes of dementia. Mild cognitive impairment

Dementia : Alcohol abuse associated dementia ; Alzheimer disease ; Cortical basal ganglionic degeneration ; Depression ; The frontotemporal dementias ; HIV-AIDS ; Lewy body dementia ; Primary progressive aphasia ; Progressive supranuclear palsy ; Traumatic brain injury (TBI or head trauma) ; Vascular dementia ; Young or early onset dementia

Other brain disorders : Delirium ; Korsakoff syndrome ; Stroke and other localized brain injury ; Transient ischemic attack

19. Research in dementia. Understanding research : Bogus cures

Research in vascular dementia and stroke

Research in Alzheimer disease : Structural changes in the brain ; Brain cells ; Neuroplasticity ; Neurotransmitters ; Abnormal proteins ; Protein abnormalities within brain cells ; Nerve growth factors ; Transplants of brain tissue ; Drug studies ; Metals ; Prions ; Immunological defects ; Head trauma

Epidemiology

Down syndrome

Old age

Heredity

Gender

Neuropsychological testing

Brain imaging

Keeping active

The effect of acute illness on dementia

Research into the delivery of services

Protective factors

Appendixes. 1. Using the Internet ; 2. Organizations.