Helping Family Members and Other Understand Alzheimer’s Disease

Excerpt from Caring for a Person with Alzheimer’s Disease Guide by National Institute on Aging

Deciding when and how to tell family members and friends

When you learn that someone you love has Alzheimer’s Disease (AD), you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. While there is no single right way to tell others, we’ve listed some things to think about.

Think about the following questions:

Are others already wondering what is going on?
Do you want to keep this information to yourself?
Are you embarrassed?
Do you want to tell others so that you can get support from family members and friends?
Are you afraid that you will burden others?
Does keeping this information secret take too much of your energy?
Are you afraid others won’t understand?

  • Realize that family and friends often sense that something is wrong before they are told. AD is hard to keep secret. When the time seems right, it is best for you to be honest with family, friends, and others. Use this as a chance to educate them about AD.

For example, you can:

Tell them about the disease and its effects.
Share books and information to help them understand what you and the person with AD are going through.
Tell them how they can learn more.
Tell them what they can do to help. Let them know you need breaks.

  • Help family and friends understand how to interact with the person who has AD. You can:

Help them realize what the person still can do and how much he or she still can understand.
Give them suggestions about how to start talking with the person. For example, “Hello George, I’m John. We used to work together.”
Help them avoid correcting the person with AD if he or she makes a mistake or forgets something.
Help them plan fun activities with the person, such as going to family reunions; church, temple, or mosque gatherings; other community activities; or visiting old friends.

  • Communicate with other when you’re out in public. Some caregivers carry a card that explains why the person with AD might say or do odd things. For example, the card could read, “My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for understanding.”

The card allows you to let others know about the person’s AD without the person hearing you. It also means that you don’t have to keep explaining things.