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Patient and Family Guide
Clinical Practice Guideline, Number 19, Consumer Version
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
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
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.
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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
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.
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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
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.
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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.
Family History of Dementia
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.
What Are the Signs of Alzheimer's Disease?
The classic sign of early Alzheimer's disease
is gradual loss of short-term memory. Other signs include:
- Problems finding or speaking the right
- Inability to recognize objects.
- Forgetting how to use simple, ordinary
things, such as a pencil.
- Forgetting to turn off the stove, close
windows, or lock doors.
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
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.
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Do you have problems with any of these
- Learning and remembering new information.
Do you repeat things that you say or do? Forget
conversations or appointments? Forget where you put
- Handling complex tasks. Do you have
trouble performing tasks that require many steps such as
balancing a checkbook or cooking a meal?
- Reasoning ability. Do you have trouble
solving everyday problems at work or home, such as
knowing what to do if the bathroom is flooded?
- Spatial ability and orientation. Do you
have trouble driving or finding your way around familiar
- Language. Do you have trouble finding the
words to express what you want to say?
- Behavior. Do you have trouble paying
attention? Are you more irritable or less trusting than
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.
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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.
Medical and Family History
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.
Functional Status Assessment
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:
- Write checks, pay bills, or balance a
- Shop alone for clothing, food, and
- Play a game of skill or work on a hobby.
- Heat water, make coffee, and turn off
- Pay attention to, understand, and discuss
a TV show, book, or magazine.
- Remember appointments, family occasions,
holidays, and medications.
- Travel out of the neighborhood, drive, or
use public transportation.
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").
Mental Status Assessment
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
1. The ability to carry out everyday
activities such as bathing, dressing, using the toilet, eating,
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.
Treatable Causes of Dementia
Sometimes the physical examination reveals a
condition that can be treated. Symptoms may respond to early
treatment when they are caused by:
- Medication (including over-the-counter
- Problems with the heart, lungs, or blood
- Metabolic disorders (such as thyroid
- Head injury.
- Vision or hearing problems.
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
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.
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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
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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
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.
Telling Family and Friends
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.
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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:
- Support groups. Sometimes it
helps to talk things over with other people and families
who are coping with Alzheimer's disease. Families and
friends of people with Alzheimer's disease have formed
support groups. The Alzheimer's Association has active
groups across the country. Many hospitals also sponsor
education programs and support groups to help patients
- Financial and medical planning.
Time to plan can be a major benefit of identifying
Alzheimer's disease early. You and your family will need
to decide where you will live and who will provide help
and care when you need them.
- Legal matters. It is also
important to think about certain legal matters. An
attorney can give you legal advice and help you and your
family make plans for the future. A special document
called an advance directive lets others know what you
would like them to do if you become unable to think
clearly or speak for yourself.
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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
- Depression Is a Treatable Illness:
Patient Guide discusses major depressive disorder,
which usually can be treated successfully with the help
of a health professional. (AHCPR Publication No. 93-0053)
- Recovering After a Stroke: Patient
and Family Guide tells how to help a person who has
had a stroke achieve the best possible recovery. (AHCPR
Publication No. 95-0664)
- Understanding Urinary Incontinence in
Adults: Patient Guide describes why people lose urine
when they don't want to and what can be done about it.
(AHCPR Publication No. 96-0684)
- Preventing Pressure Ulcers: Patient
Guide discusses symptoms and causes of bed sores and
ways to prevent them. (AHCPR Publication No. 92-0048)
- Treating Pressure Sores: Consumer
Guide describes basic steps of care for bed sores.
(AHCPR Publication No. 95-0654)
For more information on these or other
guidelines, or to receive printed copies of this booklet, call
Or write to:
Agency for Health Care Policy and Research
P.O. Box 8547
Silver Spring, MD 20907
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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
Alzheimer's Disease Education and Referral
Silver Spring, MD
Administration on Aging
American Association of Retired Persons
Children of Aging Parents
Help for Incontinent People
Insurance Consumer Helpline
National Hospice Organization
Social Security Information
(open 7 am-7 pm in all time zones)
AHCPR Publication No. 96-0704