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[The
material on this page was current when it was first posted.
For up-to-date information on this topic, visit the I
Have Alzheimer's Disease section. Note that in 2003
the Alzheimer Wandering Registry was renamed Safely Home™
-- Alzheimer Wandering Registry.]
Voices
of Alzheimer's Disease Media Kit
Jan.
2, 2001
Brochure
First
Steps -- For Families of Those Recently Diagnosed With
Alzheimer Disease
When
someone has just been diagnosed with Alzheimer's disease,
the news can be upsetting for both the individual and
those who care about him/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 will be the primary caregiver or
an involved family member, there are things you can do
right now that might make life a little easier. The information
in this brochure can help.
1.
Learn as much as you feel you can
Learn
as much about the disease and providing care as you can.
Find out how the disease can affect an individual, 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. The Alzheimer Society has
many useful resources that can help such as The
Alzheimer Journey video series, Alzheimer Disease:
A Handbook for Care and their Web site, www.alzheimer.ca.
2.
Plan for the future
Support
the individual 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 paper work 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 written his/her wishes in an advance directive. Create
a back-up plan should you be unable to provide care.
3.
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 all kinds 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 individual and other
family members will also be experiencing the same type
of emotional roller coaster.
4.
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.
5.
Seek out help
There
are community agencies and services to help you now and
in the future. These services can help you with everyday
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. Figure out who might be able
to help and then ask.
Learn
about the system of resources in your community. Try
to understand how the services work, what you can expect
from them and how you can access them. Your local Alzheimer
Society can help direct you to the services in your community.
6.
Recognize that the disease affects the person's abilities
Alzheimer's disease progresses over time. It will affect how the
person functions on a day-to-day basis. Learn what the
person can or cannot do at each stage of the disease
so that you have realistic expectations of his/her abilities.
Always focus on what the person can do, not on what abilities
are gone. Ask the person how you can help him/her stay
independent and maintain a sense of control. One tip
often heard from caregivers is that you must learn to
be patient.
7.
Recognize that caregiving can take its toll
Providing
care to an individual with Alzheimer's disease can take
its toll on the caregiver. Research has shown that caregivers
are 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,
exercise and eat a healthy diet. Find time for activities
you enjoy.
The
Alzheimer Society can help you find support. We have
a brochure called Are
You Caring for Someone With Alzheimer Disease? Remember
to Take Care of Yourself Too! that you might find
helpful.
8.
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. 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.
9.
Don't lose sight of the person
No
matter how the disease affects the individual, it is
important to treat him/her with dignity and respect.
Although certain abilities will be lost, the person's
emotions and feelings will remain, as will his/her 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.
10.
Know that the Alzheimer Society is here to help
The
Society is in your community to help you and your family.
It can help:
- Find
the information you need to learn more about the disease,
caregiving and coping strategies.
- Find
the support you need whether with a telephone counsellor
or a support group.
- Register
the individual with the Alzheimer Wandering Registry
to ensure that if the person gets lost, there is help
at hand.
- Locate
helpful services in your community
The
Alzheimer Society has information and support programs.
Find the Society nearest you and give them a call. We
are here to help. You are not alone.
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 call
1-800-616-8816.
Back
to the Media Kit introduction page.
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