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For
Families of Those Recently Diagnosed With Alzheimer's Disease
 When
someone has just been diagnosed with Alzheimer's disease,
the news may be upsetting for both the individual and
those who care about him or her. Most likely you have been worried
about the changes you have been seeing in the person
and you may also be anxious about the future.
However,
an important first step has already been taken: getting
a diagnosis. If you are the primary caregiver
or an involved family member, there are things you can
do right now that might make life a little easier. This
information can help.
- Recognize
that you are going through a variety of emotions
The news of the diagnosis and the changes it will bring
can cause you to have a variety of feelings: anger, denial,
embarrassment, frustration, fear, sadness and guilt.
These emotions are normal and common among caregivers,
and may come and go. Sometimes people get depressed.
If your feelings are overwhelming and won't go away,
talk to your doctor. It is important to be aware that
the person with the disease and other family members may also be experiencing
the same types of emotions.
- Learn
about Alzheimer's disease
Learn as much about the disease and providing care as
you can. Find out how the disease can affect a person,
what changes you can expect, and how you can provide
help and support to maintain the person's independence
and quality of life. Share this information with those
closest to the person, such as family members, friends
and co-workers; it will help them understand. Contact your local Alzheimer
Society for useful information and resources.
- Recognize
that the disease affects a person's abilities
Alzheimer's disease progresses over time. It will affect
how the person functions on a day-to-day basis. Learn
about the changes the disease will cause so that you
have realistic expectations of the person's abilities.
Ask the person how you can help him or her stay independent
and maintain a sense of control. One tip often heard
from caregivers is that you must learn to be patient, though it isn't always easy.
- Don't
lose sight of the person
No matter how the disease affects the individual, it
is important to treat him or her with dignity and respect. Although
certain abilities will be lost, the person's emotions
and feelings will remain, as will the need for companionship
and belonging. Provide activities and interactions that
bring a sense of joy and celebration. Focus on the abilities
that remain. This will go a long way in adding to the
quality of life and help the person maintain a sense
of self.
- Explore
treatment options
Currently there is no cure for Alzheimer's disease. But
medications are available that can help some people with
some of the symptoms. Discuss their risks and benefits
with the person's doctor. As well, your local
Alzheimer Society will have up-to-date information
about new treatments that might be available through drug
trials. If the individual chooses to participate
in such research, you may be asked to help.
- Recognize
that caregiving can take its toll
Providing care to a person with Alzheimer's disease can
take its toll on the caregiver. Caregivers are often
at risk for physical and emotional problems. Those who
provide care should be aware of this and take steps to
care for themselves. Maintain your physical health, stay active
and make healthy food choices. Find time for activities you
enjoy. See Caring for
Someone With Alzheimer Disease? Take care of yourself
too!
- Seek
out help
Call your local Alzheimer Society to find out what help is available in your area. Community agencies may offer practical services like help with household or caregiving tasks.
You may also have a network of family and friends who
are willing to lend support. To determine what help you
need, think about your strengths and weaknesses, what
you need and what would help you in your caregiving role. Family and friends may want to help but often don't know what to do.
Figure out who might be able to help and then ask. Learn
about the system of resources in your community. Learn
how the services work, what you can expect from them
and how you can access them.
- Develop
a support network
Find people you are comfortable with to share your feelings
and emotions. It may be a member of your family, a good
friend, members of a support group or someone at the
local Alzheimer Society. The important thing is to find
an outlet where you can express your feelings. Caregivers
often become isolated and lonely, so it is important
to stay connected to the people around you.
- Plan
for the future
Support the person in planning
for the future. Decisions about work and personal
issues need to be made while the person is able to be
involved in the decision-making process. Help get all
paperwork in order, if it is not already. Ensure that
someone has been chosen to make financial and health-care
decisions when the person is unable to do so. Make certain
the individual has talked about health-care decisions
or has documented his or her wishes. Legal
and estate planning should also be discussed. Create
an alternate plan should you be unable to provide care.
- Know
that the Alzheimer Society is here to help
The Society can help by:
- Giving
you information you need to learn more about the
disease, caregiving and coping strategies.
- Providing
support whether with a telephone counsellor or
a support group.
- Registering
the person with the disease with the Safely
Home™ -- Alzheimer Wandering Registry program
to ensure that if the person gets lost, there is
help at hand.
- Locating
services in your community.
The
Alzheimer Society has information and support programs. For more information, contact your local Alzheimer Society.
[This
information is also available in a brochure from your local
Alzheimer Society or you can download
the brochure from this site. Also
available is a brochure specifically for those with Alzheimer's disease, First Steps For Those Recently Diagnosed
With Alzheimer Disease. For a copy, contact your local
Alzheimer Society or download
a copy from this site.]
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