When a family member or important friend has Alzheimer’s disease, it affects everyone close including children, who may have trouble understanding the changes they see, as well as dealing with their feelings about them.
“The best time to talk to children about Alzheimer’s or any dementia-related illness is as soon as you can,” says Jennifer Reader, LCSW, SIFI, AFA’s director of educational services and social services. “This conversation is about nurturing and maintaining the bonds between the family members while also helping to eliminate the fear of the unknown for children.”
Gardening with Grandma, AFA’s latest children’s book, offers help in starting these conversations. AFA developed Gardening with Grandma as a tool to help start a conversation with a child about Alzheimer’s. This book and AFA’s beloved first book, Dancing with Granddad, are available at shop.alzfdn.org.
How to start.
If the person with Alzheimer’s is able to and feels comfortable doing so, have a conversation with them and the child together. Having the child hear from their loved one directly about what they are experiencing can be helpful.
- Set time aside for the conversation in a comfortable setting.
- If possible, invite feedback from the person living with Alzheimer’s about what they are experiencing.
- Encourage questions from your child to address with your loved one. For instance, “What can I do for you when you can’t find something?” or “If you seem sad, is there anything I can do to make you feel better?”
Be mindful that this type of conversation is more effective when the person is in the earlier stages of Alzheimer’s and may not be possible in the later stages. If the person is unable to have this conversation, or feels uncomfortable doing so, do not force the issue.
Children are highly intuitive. No doubt they have been picking up on these changes in their loved one, but they may not feel comfortable asking questions about them. It’s important to welcome questioning.
Share information at a level appropriate for the age and maturity of your child. Explain that Grandma has Alzheimer’s, an illness that affects memory and speaking. She may forget words and ask the same questions over again.
There may be a time in the Alzheimer’s journey when a person with memory loss won’t know the child or remember their visits. This may be difficult for the child and make them feel worried about how to engage with their loved one. Reassure the child that although their loved one may not remember a visit or a conversation, they can still hold on to the emotions they experience, carrying with them the happy and joyful feelings they felt during their time together.
About Gardening with Grandma (for ages 5-8)
One of the things 8-year-old Luke liked best about spring was heading next door to help his grandmother plant her garden. She taught him about different types of flowers and plants, and they loved watching them grow. He was unprepared as things began to change. First Grandma mistook a packet of seeds, thinking marigolds were tomatoes. When she became confused about other things, Luke told his parents he was worried about her.
Gardening with Grandma follows Luke’s learning experience as he finds new ways to connect with his grandmother who has Alzheimer’s disease. Grandma, who is early in her diagnosis, is able to share with him that even though she has a disease that affects her memory and behavior, she still loves him. The story unfolds as Luke adjusts to her move to a new home with more support. Gardening with Grandma also ends with a special message to adults to help them have meaningful, age-appropriate conversations with a child when a special person in their life has Alzheimer’s.
Gardening with Grandma is available at shop.alzfdn.org.
This article was adapted from a print version which appeared in AFA’s Alzheimer’s TODAY magazine.
