First steps for families after diagnosis
Knowing the following tips may help make life easier and more enjoyable for you and the person living with dementia as well as to prepare for the future.
Download our brochure (print-friendly version) for more information, or contact your local Alzheimer Society.
Also available is a brochure specifically for people living with Alzheimer's disease, First Steps (print-friendly version).
When someone has just been diagnosed with Alzheimer's disease or another form of dementia, the news may be upsetting for both the individual and those who care about him. Most likely you have been worried about the changes you have been seeing in him 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.
Step 1: 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.
Step 2: Learn about Alzheimer's disease and other dementias
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 her independence and quality of life. Share this information with those closest to her, such as family members, friends and co-workers; it will help them understand. Contact your local Alzheimer Society for useful information and resources.
Step 3: Recognize that the disease affects a person's abilities
Alzheimer's disease progresses over time. It will affect how he functions day to day. Learn about the changes the disease will cause so that you have realistic expectations of his abilities. Ask him how you can help him 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.
Step 4: 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, her 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 her maintain a sense of self.
Step 5: 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 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.
Step 6: Recognize that caregiving can take its toll
Providing care to a person with dementia 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 our section on Caring for someone. Take care of yourself too!
Step 7: 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.
Step 8: 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.
Step 9: Plan for the future
- Support the person in planning for the future. Decisions about work and personal issues need to be made while she 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 she is unable to do so. Make certain the person living with dementia has talked about healthcare decisions or has documented their wishes. Legal and estate planning should also be discussed.
- Create an alternate plan should you be unable to provide care.
Step 10: 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 our MedicAlert® Safely Home® program to assist emergency responders to identify the person who is lost and bring the family back together.
- Locating services in your community.