Talking to Kids About Alzheimer’s and Dementia

August 3, 2011

I have mentioned before that I had a grandfather and grandmother with Alzheimer’s disease on opposite sides of the family. My grandfather got Alzheimer’s disease when I was about 4 years old, but no one knew what to call it at the time. Was it reversible? No one could tell us. When I was in about the 4th grade, my parents and my grandmother finally decided to take him to Atlanta (a 6 hour drive) to a specialist. Diagnosis: Alzheimer’s disease, irreversible, no treatment available. I don’t remember exactly what my parents told me, but they were honest. They involved me in conversations and didn’t try to shield me from what was happening, at least in so much as I could understand at my age.

Our own daughters were 4 and newborn when my father-in-law began showing signs of Alzheimer’s disease, although it was another 2 years or so before we got the diagnosis. When our older daughter was about 6, she began to ask questions about things, which I “tip-toed” around in answering. Finally, she said one night as I was putting her to bed, “What’s the matter with Papa?”

What do you tell a child? Obviously, you have to consider the age of the child, but as much as is age appropriate, be honest. With a 4 year old, you might say, “Papa has trouble remembering things, because he has something wrong with his brain. You can’t catch it like you can a cold, so you don’t need to be scared of him. Just remember that he will always be Papa and that we will always love him.” As children grow older, add detail to that conversation. Children will ask questions, sometimes questions for which we adults don’t have the answers. Whatever you answer, and even if you can’t answer, be honest about what is happening. That will help prepare the children for the future.

Children often have an easier time dealing with people with dementia than adults. Involve your children in the care of your loved one with dementia. Let them do art or music together. We found art and music to be the bond that was never broken, no matter what Alzheimer’s disease did to my father-in-law’s brain, he could still sing the hymns of his childhood. Those times are a treasure to us now. Additionally, our younger daughter knows her grandfather through his art. You don’t have to be an art therapist to do arts and crafts projects with your loved one with dementia.

When our younger daughter was about 3, she spent the night with my in-laws. After I picked her up the next morning, just the two of us were in the car on the way home. She said, “Mama, sometimes I get scared that Papa is old and sick and that he is going to die soon.” As a parent — and one who had two grandparents stolen by Alzheimer’s disease — I was at a loss as to what I should tell her. Then, it came to me, “Papa loves God and God loves Papa, so no matter if Papa lives a long time or if he dies soon, he belongs to God and God will take care of him.” She was completely satisfied. Simple truths are usually best.

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