Terms You Need to Know
Purpose of this Booklet
What is Alzheimer's Disease?
Who Is Affected?
Possible Signs of Alzheimer's Disease
Consulting the Doctor
Special Tests
Getting the Right Care
Where to Get Help?
Other Booklets Are Available
Resources for Patients and Families
Dementia is a medical condition that interferes with the way the brain works. Symptoms include anxiety, paranoia, personality changes, lack of initiative, and difficulty acquiring new skills. Besides Alzheimer's disease, some other types or causes of dementia include: alcoholic dementia, depression, delirium, HIV/AIDS-related dementia, Huntington's disease (a disorder of the nervous system), inflammatory disease (for example, syphilis), vascular dementia (blood vessel disease in the brain), tumors, and Parkinson's disease.
Alzheimer's disease is the most common form of dementia. It proceeds in stages over months or years and gradually destroys memory, reason, judgment, language, and eventually the ability to carry out even simple tasks.
Delirium is a state of temporary but acute mental confusion that comes on suddenly. Symptoms may include anxiety, disorientation, tremors, hallucinations, delusions, and incoherence. Delirium can occur in older persons who have short-term illnesses, heart or lung disease, long-term infections, poor nutrition, or hormone disorders. Alcohol or drugs (including medications) also may cause confusion.
Delirium may be life-threatening and requires immediate medical attention.
Depression can occur in older persons, especially those with physical problems. Symptoms include sadness, inactivity, difficulty thinking and concentrating, and feelings of despair. Depressed persons often have trouble sleeping, changes in appetite, fatigue, and agitation. Depression usually can be treated successfully.
This booklet is about Alzheimer's disease and other types of dementia. It presents information for patients, family members, and other caregivers. It talks about the effects Alzheimer's disease can have on you, your family members, and your friends.
The booklet describes the early signs and symptoms of Alzheimer's disease. Sources of medical, social, and financial support are listed in the back of the booklet. This booklet is not about treating Alzheimer's disease.
In Alzheimer's disease and other dementias, problems with memory, judgment, and thought processes make it hard for a person to work and take part in day-to-day family and social life. Changes in mood and personality also may occur. These changes can result in loss of self-control and other problems.
Some 2 to 4 million persons have dementia associated with aging. Of these individuals, as many as two-thirds have Alzheimer's disease.
Although there is no cure for Alzheimer's disease at this time, it may be possible to relieve some of the symptoms, such as wandering and incontinence.
The earlier the diagnosis, the more likely your symptoms will respond to treatment. Talk to your doctor as soon as possible if you think you or a family member may have signs of Alzheimer's disease.
Research is under way to find better ways to treat Alzheimer's disease. Ask your doctor if there are any new developments that might help you.
The chances of getting Alzheimer's disease increase with age. It usually occurs after age 65. Most people are not affected even at advanced ages. There are only two definite factors that increase the risk for Alzheimer's disease: a family history of dementia and Down syndrome.
Some forms of Alzheimer's disease are inherited. If Alzheimer's disease has occurred in your family members, other members are more likely to develop it. Discuss any family history of dementia with your family doctor.
Persons with Down syndrome have a higher chance of getting Alzheimer's disease. Close relatives of persons with Down syndrome also may be at risk.
The classic sign of early Alzheimer's disease is gradual loss of short-term memory. Other signs include:
Mood and personality changes also may occur. Agitation, problems with memory, and poor judgment may cause unusual behavior. These symptoms vary from one person to the next.
Symptoms appear gradually in persons with Alzheimer's disease but may progress more slowly in some persons than in others. In other forms of dementia, symptoms may appear suddenly or may come and go.
If you have some of these signs, this does not mean you have Alzheimer's disease. Anyone can have a lapse of memory or show poor judgment now and then. When such lapses become frequent or dangerous, however, you should tell your doctor about them immediately.
Do you have problems with any of these activities:
Remember, everyone has occasional memory lapses. Just because you can't recall where you put the car keys doesn't mean you have Alzheimer's disease.
Identifying mild cases of Alzheimer's disease can be very difficult. Your doctor will review your health and mental status, both past and present. Changes from your previous, usual mental and physical functioning are especially important.
Persons with Alzheimer's disease may not realize the severity of their condition. Your doctor will probably want to talk with family members or a close friend about their impressions of your condition.
The doctors first assessment for Alzheimer's disease should include a focused history, a physical examination, a functional status assessment, and a mental status assessment.
Questions the doctor may ask in taking your history include: How and when did problems begin? Have the symptoms progressed in steps or worsened steadily? Do they vary from day to day? How long have they lasted?
Your doctor will ask about past and current medical problems and whether other family members have had Alzheimer's disease or another form of dementia.
Education and other cultural factors can make a difference in how you will do on mental ability tests. Language problems (for example, difficulty speaking English) can cause misunderstanding. Be sure to tell the doctor about any language problems that could affect your test results.
It is important to tell the doctor about all the drugs you take and how long you have been taking them. Drug reactions can cause dementia. Bring all medication bottles and pills to the appointment with your doctor.
Do you take any medications? Even over-the-counter drugs, eye drops, and alcohol can cause a decline in mental ability. Tell your doctor about all the drugs you take. Ask if the drugs are safe when taken together.
A physical examination can determine whether medical problems may be causing symptoms of dementia. This is important because prompt treatment may relieve some symptoms.
The doctor may ask you questions about your ability to live alone. Sometimes, a family member or close friend may be asked how well you can do activities like these:
Sometimes a family member or friend is not available to answer such questions. Then, the doctor may ask you to perform a series of tasks ("performance testing").
Several other tests may be used to assess your mental status. These tests usually have only a few simple questions. They test mental functioning, including orientation, attention, memory, and language skills. Age, educational level, and cultural influences may affect how you perform on mental status tests. Your doctor will consider these factors in interpreting test results.
Alzheimer's disease affects two major types of abilities:
1. The ability to carry out everyday activities such as bathing, dressing, using the toilet, eating, and walking.
2. The ability to perform more complex tasks such as using the telephone, managing finances, driving a car, planning meals, and working in a job.
When a person has Alzheimer's disease, problems with complex tasks appear first and over time progress to more simple activities.
Sometimes the physical examination reveals a condition that can be treated. Symptoms may respond to early treatment when they are caused by:
Drug reactions are the most common cause of treatable symptoms. Older persons may have reactions when they take certain medications. Some medications should not be taken together. Sometimes, adjusting the dose can improve symptoms.
Delirium and depression may be mistaken for or occur with Alzheimer's disease. These conditions require prompt treatment. See the inside front cover of this booklet for more information on delirium and depression.
Gathering as much information as possible will help your doctor diagnose early Alzheimer's disease while the condition is mild. You may be referred to other specialists for further testing. Some special tests can show a persons mental strengths and weaknesses and detect differences between mild, moderate, and severe impairment. Tests also can tell the difference between changes due to normal aging and those caused by Alzheimer's disease.
If you go to a special doctor for these tests, he or she should return all test results to your regular family doctor. The results will help your doctor track the progress of your condition, prescribe treatment, and monitor treatment effects.
When the diagnosis is Alzheimer's disease, you and your family members have serious issues to consider. Talk with your doctor about what to expect in the near future and later on, as your condition progresses. Getting help early will help ensure that you get the care that is best for you.
When tests do not indicate Alzheimer's disease, but your symptoms continue or worsen, check back with your doctor. More tests may be needed. If you still have concerns, even though your doctor says you do not have Alzheimer's disease, you may want to get a second opinion.
Whatever the diagnosis, followup is important.
Report any changes in your symptoms. Ask the doctor what followup is right for you. Your doctor should keep the results of the first round of tests for later use. After treatment of other health problems, new tests may show a change in your condition.
Recognizing Alzheimer's disease in its early stages, when treatment may relieve mild symptoms, gives you time to adjust. During this time, you and your family can make financial, legal, and medical plans for the future.
Your health care team may include your family doctor and medical specialists such as psychiatrists or neurologists, psychologists, therapists, nurses, social workers, and counselors. They can work together to help you understand your condition, suggest memory aids, and tell you and your family about ways you can stay independent as long as possible.
Talk with your doctors about activities that could be dangerous for you or others, such as driving or cooking. Explore different ways to do things.
Ask your doctor for help in telling people who need to know that you have Alzheimer's disease members of your family, friends, and coworkers, for example.
Alzheimer's disease is stressful for you and your family. You and your caregiver will need support from others. Working together eases the stress on everyone.
Learning that you have Alzheimer's disease can be very hard to deal with. It is important to share your feelings with family and friends.
Many kinds of help are available for persons with Alzheimer's disease, their families, and caregivers. Turn to the back of this booklet for a list of resources for patients and families. These resources include:
The information in this booklet is based on Recognition and Initial Assessment of Alzheimer's Disease and Related Dementias: Clinical Practice Guideline No. 19. The Clinical Practice Guideline is scheduled to be released later this year (Winter 1996). A multidisciplinary panel of physicians, psychiatrists, psychologists, neurologists, nurses, a geriatrician, a social worker, and two consumer representatives developed the guideline. The Agency for Health Care Policy and Research (AHCPR), an agency of the U.S. Department of Health and Human Services, supported its development. Other AHCPR guidelines may be helpful to families affected by Alzheimer's disease. They include:
For more information on these or other guidelines, or to receive printed copies of this booklet, call toll-free: 800-358-9295.
Or write to:
Agency for Health Care Policy and Research
Publications Clearinghouse
P.O. Box 8547
Silver Spring, MD 20907
Many kinds of help are available for patients with Alzheimer's disease, their families and caregivers. The list below gives information for contacting national organizations. They can refer you to local chapters and other resources where you live.
Alzheimer's Association
Chicago, IL
(312)335-8700
800-272-3900
Alzheimer's Disease Education and Referral
(ADEAR) Center
Silver Spring, MD
800-438-4380
Administration on Aging
Washington, DC
(202)619-1006
Eldercare Locator
Washington, DC
800-677-1116
American Association of Retired Persons
(AARP)
Washington, DC
(202)434-2277
800-424-3410
Children of Aging Parents
Levittown, PA
(215)945-6900
Help for Incontinent People
Spartanburg, SC
(803)579-7900
800-BLADDER
Insurance Consumer Helpline
Washington, DC
800-942-4242
Medicare Hotline
Baltimore, MD
800-638-6833
National Hospice Organization
Arlington, VA
(703)243-5900
800-658-8898
Social Security Information
800-772-1213
(open 7 am-7 pm in all time zones)
U.S. Department of Health and Human
Services
Agency for Health Care Policy and Research
2101 East Jefferson Street, Suite 501
Rockville, MD 20852
AHCPR Publication No. 96-0704
September 1996
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