First Steps for a Family Affected by Alzheimer’s

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.

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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.

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.

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.

Provincial office

Alzheimer Society Of Saskatchewan
2550 – 12th Ave., Ste. 301
Regina, SK S4P 3X1
Tel: (306)949-4141
Toll-free: 1-800-263-3367
Fax: (306)949-3069
E-mail: info@alzheimer.sk.ca
Web: www.alzheimer.ca/Saskatchewan
Regional office

Saskatoon Office
Oliver Lodge
1405 Faulkner Cres.
Saskatoon, SK S7L 3R5
Tel: (306)683-6322 (call for office hours)
Fax: (306)683-6391
E-mail: saskatoon@alzheimer.sk.ca