The 36-hour day: a family guide to caring for people who have Alzheimer disease and other dementias

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

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 in people who have dementia

The brain, behavior, and personality : why people who have 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 who has dementia experiences in making himself understood

Problems the person who has dementia experiences 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

Riding 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

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 who has dementia

Cause of death

Dying at home

Hospice and palliative care

Dying in the hospital or nursing home

When should treatment end?

What kind of care can be given at the end of life?

7. Managing the behavioral and neuropsychiatric symptoms of dementia

The six R's of behavior management

Concealing memory loss

Wandering

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

Distractability

Clinging or persistently following you around ("Shadowing")

Complaints or insults

Taking things

Forgetting telephone calls

Demands

Stubbornness and uncooperativeness

When the person who has dementia insults the sitter

Using medication to manage behavior

8. Symptoms associated with mood change and suspiciousness

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, day care, and respite care

When the person who has 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

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 who has 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. Long-term care arrangements

Types of living arrangements

Moving with the person who has dementia

Nursing homes

Finding a long-term care setting outside the home

Paying for care

Guidelines for selecting a long-term care facility

Moving a person to a 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 and delaying cognitive decline

Usual age-associated changes

Risk factors identify potential targets and possible approaches for decreasing the risk of dementia

Cardiovascular factors

Physical exercise

Social and intellectual activity

Diet

Education

Diabetes

Depression

Toxins

Head injury

Age

Genetics

Medications

18. Brain disorders and the causes of dementia

Mild cognitive impairment

Dementia

Alcohol Use Disorder Associated Dementia

Alzheimer Disease

Amnestic (Korsakoff) Syndrome

Cortico-basal Ganglionic Degeneration

Depression

The frontotemporal dementias

HIV-AIDS

Lewy Body Dementia

Parkinson Disease Associated 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

Stroke and other localized brain injury

Transient ischemic attack

19. Research in dementia

Bogus cures

Research in vascular dementia and stroke

Research in Alzheimer Disease

Structural changes in the brain

Brain cells

Neuroplasticity

Neurotransmitters

Abnormal proteins

Abnormal proteins within brain cells

Infection

Nerve growth factors

Transplants of brain tissue

Metals

Prions

Immunological defects

Head trauma

Drug studies

Epidemiology

Down Syndrome

Old age

Heredity

Gender

Neuropsychological testing

Brain imaging

Keeping active

Effect of acute illness on dementia

Research into the delivery of services

Protective factors

One disease or many?