Helping Children Understand Alzheimer's Disease

Several years ago I attended an afternoon backyard barbeque and, among the adults in attendance, was a man with Alzheimer’s disease. Throughout the afternoon, he repeated the same question again and again. While the adults understood and went along with his repeated questions, there was a child, probably about eight years old, who did not understand. At one point, she quietly pulled one of the adults aside and said, “Why does he keep asking me the same question?” Without hesitation, the adult explained the man had an illness called Alzheimer’s, and it caused him to do that. Further, he was unable to remember he had just asked the question, or even remember the answer he gave her. He just kept asking.

That was the extent of the answer. The girl seemed satisfied, and went about her afternoon at the barbeque. It was all quite simple, as well as appropriate for her level of understanding.

Listening and Answering

Key to answering a child’s questions about Alzheimer’s is to listen, hear what they are asking, and respond with an answer that fits the child’s level of understanding. A short, concise response may be perfect. Children are great at helping us understand what they need to know. Our task is to listen, and then respond accordingly.

The woman at the barbecue did just that. She listened, and then provided an answer appropriate to her questioner. The child, by her response of continuing on with the afternoon, showed she was satisfied with the answer given to her.

When a Child has Regular Contact with One with Alzheimer’s

The above example describes an infrequent visit between the child and the person with Alzheimer’s. In such a scenario, it can be easier to navigate a child’s questions. But what if a child lives with someone with Alzheimer’s, or is in frequent contact with an adult with Alzheimer’s, and witnesses unusual behavior? Children at any age may experience a number of feelings around their loved one’s unusual behavior—anxiety, irritation, embarrassment, boredom, a sense of loss, rejection by other family members, and guilt for feeling any of these emotions. These are normal emotional responses to the situation. Our role as adults is to help children make sense of it and reassure them that their feelings are just that—normal.

In such situations, remember the following:

• Make a time for your child to be able to talk about whatever is on his mind. Be sure he feels heard and has a chance to thoroughly express himself;
• When there is a difficult situation, explain it to your child. This can be helpful and reassuring, which is what your child needs;
• Remind your child the behavior is not his fault and is not directed at him;
• Set the tone for the child by how you cope with each situation. Model caring behavior and skills.

Involve Your Child

Involve your child in caring for his loved one. This can be through an activity – a puzzle, a game, sharing a walk, etc. Remind him that doing this is very helpful to the one with Alzheimer’s. Be sure to limit this time so your child always has a chance for his own time to be a kid.

The Power of Stories

Not to be overlooked are the power of stories. Almost magically, a good children’s book that tells a similar story to yours can be a treasure. A story can communicate a message in a way you may not have considered. Check any online bookseller or your local library and chances are there is a book appropriate for your child’s level of understanding and favorite style of reading. (As of this writing, a search of the children’s book section of an online bookseller identified 164 books under “Alzheimer’s”). Ask your local librarian, or check the comments section if you are looking online. In addition, BrightFocus Foundation offers "Through Tara's Eyes," a free booklet available in PDF format created to aid parents, teachers, and relatives in explaining Alzheimer's disease to elementary school children. There are lots of great ideas for children.

In summary, listen well, be truthful, be open, be understanding, be sensitive, and be reassuring. Sounds like a recipe for every day with a child.