When someone has just been diagnosed with Alzheimer Disease, the news may
be upsetting for both the individual and those who care about 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. This
information can help.
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 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. The Alzheimer
Society has many useful resources that can help such as The Alzheimer Journey
video series, Alzheimer Disease: A Handbook for Care and this Web site
(http://www.alzheimer.ca - www.alzheimer.ca).
Recognize that the disease affects the person's abilities
Alzheimer 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 her stay independent and maintain a sense of control.
One tip often heard from caregivers is that you must learn to be patient.
Don't lose sight of the person
No matter how the disease affects the individual, it is important to treat
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 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.
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 person and other family members may also be experiencing the same types
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 written her wishes in an advance directive. Legal and
estate planning should also be discussed. Create a back-up plan should you be
unable to provide care.
Recognize that caregiving can take its toll
Providing care to a person with Alzheimer 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, exercise and eat a healthy diet. Find
time for activities you enjoy. See Caring for Someone With Alzheimer Disease?
Take care of yourself too!
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. Learn 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.
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.
Know that the Alzheimer Society is here to help.
The Society can help you and your family:
- Give you information you need to learn more about the disease, caregiving
and coping strategies.
- Provide support whether with a telephone counsellor or a support group.
- Register the individual with the Safely Home™ -- Alzheimer Wandering
Registry program to ensure that if the person gets lost, there is help at hand.
- Locate services in your community. For more information, contact your
local Alzheimer Society at www.alzheimer.ca.