(National Institutes of Health) When you learn that someone has Alzheimer’s disease, 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. Realize that family and friends often sense that something is wrong before they are told. Alzheimer’s disease is hard to keep secret.
There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:
- Tell friends and family about Alzheimer’s disease and its effects.
- Share articles, websites, and other information about the disease.
- Tell them what they can do to help. Let them know you need breaks.
Tips for Communicating
You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:
- Help family and friends realize what the person can still do and how much he or she still can understand.
- Give visitors suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
- Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask visitors to respond to the feelings expressed or talk about something different.
- Help family and friends plan fun activities with the person, such as going to family reunions or visiting old friends. A photo album or other activity can help if the person is bored or confused and needs to be distracted.
Remind visitors to:
- Visit at times of day when the person with Alzheimer’s is at his or her best.
- Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
- Respect the person’s personal space, and don’t get too close.
- Not take it personally if the person does not recognize you, is unkind, or gets angry.
When You’re Out in Public
Some caregivers carry a card that explains why the person with Alzheimer’s 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 your understanding.”
The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.
Helping Children Understand AD
When a family member has AD, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age. It also depends on his or her relationship to the person with AD.
Give children information about AD that they can understand. There are good books about AD for children of all ages. Some are listed on the Alzheimer’s Disease Education and Referral (ADEAR) Center website, www.nia.nih.gov/alzheimers.
Here are some other suggestions to help children understand what is happening:
- Answer their questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”
- Help them know that their feelings of sadness and anger are normal.
- Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.
If the child lives in the same house as someone with AD:
- Don’t expect a young child to help take care of or “babysit” the person with AD.
- Make sure the child has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework.
- Make sure you spend time with your child, so he or she doesn’t feel that all your attention is on the person with AD.
- Help the child understand your feelings. Be honest about your feelings when you talk with a child, but don’t overwhelm him or her.
Many younger children will look to you to see how to act around the person with AD. Show children they can still talk with the person, and help them enjoy things each day. Doing fun things together can help both the child and the person with AD.
Here are some things they might do:
- Do simple arts and crafts.
- Play music.
- Look through photo albums.
- Read stories out loud.
Some children may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. You may want to ask a school counselor or a social worker to help your child understand what is happening and learn how to cope. Be sure to check with your child often to see how he or she is feeling.
A teenager might find it very hard to accept how the person with AD has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. It’s a good idea to talk with teenagers about their concerns and feelings. Don’t force them to spend time with the person who has AD. This could make things worse.
If the stress of living with someone who has AD becomes too great for a child, think about placing the person with AD into a respite care facility. Then, both you and your child can get a much-needed break. See “Respite Services” for more information about respite care.
For more caregiving tips and other resources:
- Read “Caring for a Person with Alzheimer’s Disease”: www.nia. nih.gov/alzheimers/publication/ caring-person-alzheimers-disease
- Visit: www.nia.nih.gov/alzheimers/topics/caregiving
- Call the ADEAR Center toll-free: 1-800-438-4380
National Institute on Aging