Early Alzheimer’s Disease:Patient and Family Guide


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

Terms You Need to Know

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.

Purpose of this Booklet

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.

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What Is 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,
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

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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Who Is Affected?

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.

Down Syndrome

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

  • Problems finding or speaking the right word.
  • Inability to recognize objects.
  • Forgetting how to use simple, ordinary things, such as a
  • Forgetting to turn off the stove, close windows, or lock

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.

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Possible Signs of Alzheimer’s Disease

Do you have problems with any of these activities:

  • 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 places?
  • 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 usual?

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

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Consulting the Doctor

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

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

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.

Physical Examination

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

  • Write checks, pay bills, or balance a checkbook.
  • Shop alone for clothing, food, and household needs.
  • Play a game of skill or work on a hobby.
  • Heat water, make coffee, and turn off stove.
  • Pay attention to, understand, and discuss a TV show, book,
    or magazine.
  • Remember appointments, family occasions, holidays, and
  • Travel out of the neighborhood, drive, or use public

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

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 of

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
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 drugs).
  • Alcohol.
  • Delirium.
  • Depression.
  • Tumors.
  • Problems with the heart, lungs, or blood vessels.
  • Metabolic disorders (such as thyroid problems).
  • Head injury.
  • Infection.
  • 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 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.

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Special Tests

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

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.

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Getting the Right Care

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

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.

Coordinating Care

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

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Where To Get Help?

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 and families.
  • 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
    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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Other Booklets Are Available

The information in this booklet is based on Recognition and
Initial Assessment of Alzheimer’s
Disease and Related Dementias: Clinical Practice Guideline No.
. 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:

  • 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
    describes why people lose
    urine when they dont want to and what can be done about it.
    (AHCPR Publication No.
  • 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
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

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Resources for Patients and Families

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

Alzheimer’s Disease Education and Referral (ADEAR)

Silver Spring, MD

Administration on Aging
Washington, DC

Eldercare Locator
Washington, DC

American Association of Retired Persons (AARP)
Washington, DC

Children of Aging Parents
Levittown, PA

Help for Incontinent People

Spartanburg, SC

Insurance Consumer Helpline

Washington, DC

Medicare Hotline
Baltimore, MD

National Hospice Organization
Arlington, VA

Social Security Information
(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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