Understanding Alzheimer’s disease and other forms of dementia is complicated enough for adults. For children, watching the diseases progress can be overwhelming.
No matter what a child’s age, a few educational messages can help. Perhaps most important is that the person with dementia still loves that child, says Patricia Lacey, chief operating officer of the Alzheimer’s Association Southeastern Virginia Chapter.
“The same person is still in there, even if they can’t communicate with you the way they used to or maybe don’t even remember your name,” Lacey says. “And although they might be forgetful and say or do strange things, they can still feel your love and kindness in the moment.”
Kids also need guidance on how to stay connected with a loved one, says Dr. Paul Evans, medical director of Riverside PACE, a long-term care program for the elderly. “Children really can play an important role, because people with dementia often respond to them in a more positive way than they do to adults,” Evans notes.
Here’s what kids need to know:
Dementia is a real, physical disease of the brain.
Patients aren’t “acting crazy”—even though they might not look sick, they have an illness attacking their brains, just like someone who has a heart or kidney disorder. The Alzheimer’s Association offers explanatory videos and pictures online at alz.org, under the “Kids & Teens” section (click on the “Life with ALZ” tab on the home page).
It’s not contagious. You can’t “catch” dementia like a virus; hugging and kissing are safe. Many kids also worry that their parents might get the same disease. In that case, point out relatives who don’t have it and focus on positives such as ways to keep themselves healthy, new medications and ongoing research into a cure.
Memory is a very complex process.
Younger kids might understand it like a tape recorder, Evans suggests: “Alzheimer’s means the person’s tape recorder isn’t working, first for recent memories and later for other information. So saying things like, ‘I already told you that’ or ‘Try hard to remember’ won’t work.” Older kids can discuss or read about the billions of brain cells that rely on chemical and electrical signals to stay healthy and connect with each other. “You can tell a child, ‘Your name is still in Grandma’s brain, but she just can’t get to that memory to pull it out,’” Evans says.
While nobody can “fix” dementia, we’re not helpless. A loved one still might find great joy in activities such as looking at old photos, listening to music, planting flowers or taking a walk. “Kids feel empowered if they’re given positive things to do,” Lacey says. She suggests having several pre-planned activities on hand during visits should conversation stall.
Things will get worse.
In an age-appropriate way, explain that this is a progressive disease and the brain will gradually lose its power to tell the body what to do. Prepare kids for behaviors they might see as the person gets sicker: forgetting names, asking the same questions, crying, getting frustrated or angry or soiling themselves.
Nothing is your fault.
Some kids worry a loved one has fallen ill or is deteriorating because they were mean or misbehaved.
You’re not alone. More than five million Americans are living with Alzheimer’s disease, so lots of other kids are in similar situations.
It’s normal to feel angry, sad, confused or embarrassed. If you think a family support group would help, check with your doctor or local hospital for any nearby.
Be respectful, kind and calm.
Kids learn how to treat the elderly from their parents. “You can tell a child, ‘Grandma still loves you. She’s still the same person.’ But if you’re always angry at her, then the child is asking, ‘If Grandma still loves us and we love her, why are you yelling at her?’” Evans notes. “Actions carry more weight than words.”