When my mother first began showing definite symptoms of dementia, she had 37 grandchildren. That meant there were several children who were adolescents. We were attending my nieces wedding in Galveston, TX, at the Galvez Hotel, in March of 2011. I have nine brothers and sisters, and we all were there. Family was everywhere. Knowing that my mother needed more attention, we got her dressed first. She didn’t want to stay in the room while I got dressed, so I asked my son, who was there from college, to sit with her in the lobby. After I finished getting dressed I immediately went to the lobby to get mother. My son met me with tears in his eyes. My mother was walking around in the lobby, just observing everything. My son said, “What’s wrong with her? She doesn’t know who I am, and wouldn’t respond to anything that I said to her.” I immediately had to try to explain to him what was going on. At that time, I knew that I had to figure out a way to explain it to the younger kids exactly what dementia is.
One of the main things I realized is the approach to take had to be with care and sensitivity. In a very compassionate way, you have to explain that dementia is a word used to describe when someone has trouble remembering things or thinking clearly. It’s not just getting older; it’s like the brain is having a hard time working properly.
I found that the best way to help them to understand was to use or relate to their experiences. You can compare it to forgetting where they left their toys or not remembering a story. Explain that sometimes people with dementia forget important things, like names of family members or how to do everyday tasks. Young children understand emotions. Help them understand that people with dementia can feel scared or confused. It’s important to be patient and kind, just like we would want others to be with us when we feel upset.
Share a story about a character (real or fictional) who has dementia. This can help them understand what it’s like and foster empathy. For instance, you could tell a story about a grandparent who sometimes forgets things but still loves them very much. Let them know how dementia can change how a person acts. They might be more forgetful or sometimes feel angry or sad. Emphasize that it’s not their fault; it’s just the illness affecting their brain.
Allow them to ask questions and express their feelings. Answer honestly but gently, reinforcing that it’s okay to feel confused or sad about what they’re learning.