Talking to Kids about Dementia: How to Explain Changes in a Loved One

  • I'll never forget the look on my kids' faces when they first talked to their grandfather - my dad - after his brain surgery. It's unclear what went wrong for Dad, but the surgery, performed because of fluid build-up behind scar tissue from a World War II head injury, left him in a state of extreme dementia. The irony that this surgery was to prevent dementia wasn't lost on his family. The fact that this surgery is generally very safe and effective didn't help ease the pain the family felt. The kids' grandpa was no longer Grandpa as they knew him. Their expressions upon that discovery are burned into my brain.

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    Now, years after his surgery, and decade of living with dementia before his death, I've learned a lot about anesthetics and it is possible that the anesthetic is what caused this "poor outcome," as the medial folks call such things as happened to Dad.


    This "poor outcome" was no one's fault, at least as far as we know. It just happened. But this overnight change in my dad was severe. He needed to move to a local nursing home. I explained as well as possible to my kids that they would find Grandpa different. That he couldn't help his behavior and that sometimes his behavior was very odd. That he would no longer be able to help them on intellectual adventures - we must help him.


    Though I explained as much ahead of time as I could, upon meeting their faces said it all. "Who is this man? Where did Grandpa go?"


    Alzheimer's and other dementias are generally slower than Dad's surgery in destroying the personality of the person with the disease, but the end result is similar. Kids still need help understanding these issues. Here are a few suggestions:

    • Books can be very helpful to many. There are quite a few available to help children understand dementia and what it is doing to a grandparent's mind. I wrote about a number of them in "Children's Books That Deal with Alzheimer's." There are others, as well, so checking out your local book store or can help be useful.
    • Support groups specifically targeting children are available through some Alzheimer's organizations. Kids are generally helped, just as adults are, by the knowledge that they aren't alone with their problems.
    • Kids often feel ashamed of a loved one with dementia, and then guilty because they feel ashamed. If a support group isn't enough, some counseling to help them understand that their feelings are okay and that they aren't alone, could help them cope.
    • Daily, direct attention to kids' needs is necessary. It's stressful to be the caregiver of someone with dementia, but we can't neglect our kids while doing so. Decisions about who needs our attention most can nearly tear us apart, but some of us have to make these decisions daily. We need to try to balance our kids' needs with our elders' so that the kids don't start feeling their needs are no longer important. I addressed this in, "The Sandwich Generation: Caring for Multiple Generations."

    The changes that come with dementia are hard enough for adults to handle. To expect children to be comfortable with dementia after reading a book or having a talk is unrealistic. Helping children through this crisis will be an ongoing part of caring for the elder. It's tough. I know. I've been there. My kids were each different in the way they processed and handled the change in their grandfather, but they did okay. They did their best to understand and I did my best to help them. That's all any of us can do.


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Published On: August 06, 2010