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Introduction
When you learn that you have a diagnosis of Alzheimer’s disease,
you may hesitate to tell others. You may be coming to terms with the diagnosis
yourself or fear that others may feel uncomfortable around you. It is
true that your relationship with family and friends will change. But it
is important to talk to the people in your life about Alzheimer’s
disease and about the changes you will all experience together.
Sharing your diagnosis
Talking about your diagnosis is important for helping people understand
Alzheimer’s disease and learning about how they can continue to be
a part of your life. The following suggestions may be helpful:
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Explain that Alzheimer’s disease is not a normal part of aging
but a disease of the brain that results in impaired memory, thinking,
and behavior.
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Share educational information on Alzheimer’s disease or invite
family and friends to attend Alzheimer education programs.
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Be honest about how you feel about your diagnosis and allow other
family members to do the same.
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Assure friends that although the disease will change your life, you
want to continue enjoying their company.
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Let family and friends know when and how you may need their help
and support.
If you have Alzheimer’s disease, you will find that eventually there
will be many changes in your relationships with family members and friends.
Planning for these changes and talking about them honestly will help everyone.
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Working with your spouse
Most people with Alzheimer’s disease continue to live at home even
as the disease progresses. As a result, your spouse may have to manage
the household and your care. He or she may feel a sense of loss because
of the changes the disease brings to your relationship. The following
suggestions may benefit your relationship.
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Continue to participate in as many activities as you can.
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Modify activities to your changing abilities.
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Talk with your spouse about how he or she can assist you.
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Work together to gather information about caregiver services and
their costs, such as housekeeping and respite care, and start a file
you can consult when they are needed.
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Seek professional counseling to discuss new factors in your relationship
and changes in sexual relations.
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Continue to find ways in which you and your spouse can fulfill the
need for intimacy.
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Encourage your spouse to attend a support group for caregivers.
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Helping children and teens
Children often experience a wide range of emotions when a parent or grandparent
has Alzheimer’s disease. Younger children may be fearful that they
will get the disease or that they did something to cause it. Teenagers
may become resentful if they must take on more responsibilities or feel
embarrassed that their parent or grandparent is “different.”
College-bound children may be reluctant to leave home.
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Reassure young children that they cannot “catch” the disease
from you.
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Be straightforward about personality and behavior changes. For example,
you may forget things, such as their names, and say and do things
that may embarrass them. Assure them that this is not their fault
or intentional but a result of the disease.
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Find out what their emotional needs are and find ways to support
them, such as meeting with a counselor who specializes in children
who have a loved one diagnosed with Alzheimer’s.
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School social workers and teachers can be notified about what the
children may be experiencing and be given information about the disease.
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Encourage children and teens to attend support group meetings and
include them in counseling sessions.
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Record your thoughts, feelings, and wisdom to "be with them"
as they experience important events in their lives (graduations, dating,
marriage, births, and deaths).
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To help children and teens learn more about Alzheimer's disease
and understand how it affects you and them, we have a
special Kids
& Teens section. It includes printed resources,
book reviews and links to sites that explain how the brain
works.
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