Explaining Alzheimer’s Disease to Children
When a family member or important friend has Alzheimer’s disease, it affects everyone close to them, including children, who may have trouble understanding the changes they see, as well as dealing with their feelings about them. A caring adult can help children formulate questions and express their concerns. Here are some tips about explaining Alzheimer’s disease to children.
Share information at a level appropriate for the age and maturity of the child
Here are some ways to describe what is going on:
[Person’s name] has Alzheimer’s, an illness that affects memory and speaking.
[Person’s name] may forget words and ask the same questions over again.
[Person’s name] may not remember names or faces.
[Person’s name] may also get frustrated and even upset because of these changes.
AFA has a children’s book, Dancing with Granddad: An Alzheimer’s Story for Children and Their Families, that adults can use as a resource to begin the Alzheimer’s conversation with a child. Learn more here.
Remind children that:
* Asking questions is okay; there are no silly ones.
* The person is doing the best they can and cares about them as they always did, even if they can’t express it in the same way.
* They should not take the changes personally when their family member or friend forgets their name or repeatedly asks them the same question.
* The person’s symptoms may change day to day and even moment to moment.
* Being scared is normal.
* It’s no one’s fault.
Include their loved one in the conversation if possible
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.
Encourage a child’s interaction
You may want to provide some suggestions to the child on how to engage with their loved one, particularly since the person may be behaving differently. Some suggestions:
* Remind the person who you are: “Hi , it’s [child’s name].”
* Speak slowly. Act gently.
* Ask one question at a time. Wait for the person to respond.
* Tenderly touch their arm or hand.
* Let them know you’ve come to “share a story,” “draw a picture” or “give a hug.” (But always ask them first if it’s okay. “Sometimes the Alzheimer’s doesn’t want a hug that day.”)
* Go with the flow; each visit may be different. Let your person guide you.
* Try to still have fun.
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.
Have questions about explaining Alzheimer’s disease to children? Contact the AFA Helpline to speak with a licensed social worker.