Tips for Talking About a Dementia Diagnosis With Grandchildren or Other Children in the Family

A dementia diagnosis affects the entire family, and children are no exception. By talking to grandchildren and other children in your family about your loved one’s condition, you can help them cope and allow them to maintain a positive relationship with that special person who has dementia. Following these tips can help open the doors to a positive conversation about dementia with the youngest members of your family.

1. Provide an Age-Appropriate Explanation

Explaining the situation openly in words children can understand is the first step in talking about dementia. Tailor the message to the child’s age and development. With small children, it may be enough to say something like, “Grandpa has an illness that makes it hard for him to remember things” or “Grandma has an illness called dementia. It makes her forget things and get confused sometimes.”

For older children, you may want to go into more detail about dementia. You could say something like, “Grandma has an illness that affects her brain cells, and this changes how she thinks and remembers things.” Teenagers may benefit from reading a description of dementia together. The Alzheimer’s Association has a helpful write-up about dementia you can use as a starting point.

2. Be Prepared for Questions

After they’re given an explanation, kids are likely to have questions about the situation. They may want to know if the doctor will be able to make their grandparent better or ask if this means their loved one will soon die. Prepare yourself to answer whatever they ask, and be honest in your answers.

Don’t be afraid to say “I don’t know” if you’re asked something you don’t know how to answer. Follow up your truthful reply with an invitation to find out the answer together. Then look for explanations together using trusted online resources like the National Institute on Aging, the Alzheimer’s Association, the World Health Organization and the Alzheimer’s Society websites. If you struggle to find an answer, offer to ask your loved one’s health care provider and share the information later.

3. Read Books Together

Reading together is a great way to help children learn about difficult topics, and there’s a wealth of children’s books about dementia. Here are a few to consider:

• A Doll for Grandma by Paulette Sharkey
• Grandpa Forgets by Suzi Lewis-Barned
• Grandma and Me by Beatrice Tauber Prior & Mary Ann Drummond
• Grandma, It’s Me! by YY Chan
• My Grandma Has Dementia by Alex Winstanley
• The Remember Balloons by Jessie Oliveros
• Weeds in Nana’s Garden by Kathryn Harrison
• Wilfred Gordon McDonald Partridge by Mem Fox
• Will Grammy Remember Me? by J. Elizabeth

4. Encourage Them to Share Their Feelings

After you’ve answered questions, invite the child to share how they feel. Let them know whatever they’re feeling, whether it’s anger or sadness or fear, is OK. Remind them that it’s also OK to still be happy sometimes, even though their loved one is sick. Tell them there’s no wrong way to feel, and their feelings are likely to change from one minute to the next.

5. Don’t Hide Your Emotions

As you talk about your loved one’s diagnosis, you may experience emotions of your own. Whatever you’re feeling, don’t be afraid to let it show. If you get choked up or start to cry, tell your child, “Thinking about this makes me sad, but it’s OK to be sad.” Then, you can use the moment as an invitation to share their own feelings by asking, “How does it make you feel?”

6. Discuss Behaviors Openly

When kids spend time with a loved one who has dementia, they may observe behaviors that confuse or scare them. Be ready to talk honestly about anything that happens, share your feelings about it and invite the child to do the same. You can say something like, “Grandma was yelling that way because of her illness. She couldn’t help it, and it doesn’t mean she doesn’t love us. It made me feel sad when it was happening. How did it make you feel?”

7. Plan Activities to Do Together

Focusing on things your loved one can still do can put a positive spin on conversations with kids. Come up with some ideas of activities you can all do together, such as listening to music, looking at a photo album, doing a simple craft or reading a story.

8. Expect to Explain Things Again

Even if it seems like they understood completely during the initial conversation, children may need you to repeat the explanation again in the future. They may also ask the same questions about your loved one again and again. Practice patience and handle subsequent conversations the same way you did the first time.

9. Seek Outside Support

Remember, you don’t have to face your loved one’s diagnosis alone. A family therapist can help everyone work through their feelings and better cope with the stress of the situation. If your loved one is living in a memory care community, the staff is also there to support you. Introduce kids to the staff and explain they’re there to help your loved one.