How to Talk to Young Kids About Dementia

Raising children is an adventure filled with many conversations you never thought you'd have. In the past week alone, I've found myself talking about why we shouldn't chop the dog with our cardboard ninja swords, why I don't want to meow like a cat right now, and way too many conversations about poop.

These are funny and lighthearted things, but our family also regularly has another type of conversation we didn't expect. I have the unfortunate privilege of getting to raise my 3 young children while also caring for my mom, who is living with Alzheimer's dementia, and we have to talk about it a lot.

There is no easy way to approach some of these topics. But just like the everyday silliness, we talk about Grandma as the subject comes up. We find it is best when we try to be honest, keep things simple, and keep things positive.

Be honest

Kids are a lot smarter than we think. My 2 oldest are elementary age and surprise me often with thoughtful and perceptive questions about people, the planet, and even philosophy.

I respect that they think hard about the world and everything in it. And I want them to know as much as possible about this challenging situation with Grandma rather than leave them wondering and scared. So with all that is going on with caring for my mom, I knew it would be best for our family to be fairly open with my kids.

They know that my mom has Alzheimer's dementia. I like to use those terms rather than a euphemism like "Grandma has memory problems" or "Grandma is just getting old." I want them to know the difference between healthy aging and this disease, which is exactly that, a brain disease in which cells are not functioning as they should.

Hearing medically-correct words doesn't seem that crucial for kids. But even if they don't totally understand the diagnosis, they are starting to be able to distinguish between my mom, who is sick, and other elderly people who are healthy. This also shows them that aging doesn't automatically mean sickness, and they don't have to be scared of getting older.

Keep it simple

While we are honest about certain aspects of the process, our kids are still kids, so we also try to keep it simple for them. I won't repeat all the things I read in my dementia caregiving books, and I don't try to explain some of the future symptoms we have to look forward to.

Some things they can understand, and some are not so age-appropriate. For example, I don't talk about how someday Grandma might forget our names or who we are. And I don't go into detail about the unfortunate side effects like eventually losing the ability to take care of hygiene or even eat independently.

I don't know how we'll explain those things when my mom encounters them, but we will cross those bridges then.

Keep it positive

There is so much pain and grief in seeing your loved one progressively lost to the disease. But my kids are mostly spared from this simply because of their ages. It also is a great help if we adults keep things as positive as possible.

As many caregivers can relate, staying positive is not easy. It would be easy to vent out loud often about the complicated aspects of caregiving, like the stress of scheduling and how many people I have to coordinate with for Mom's care. But I try my best not to constantly narrate the caregiving process. My kids are always around and always listening.

We make visiting Grandma fun, and I invite them into whatever project we are doing to help her out. They are always excited to go see her and help decorate her room for the next holiday or explore around her senior home. My mom likes to hand out ice cream, and even though we don't eat a lot of treats, I let the ones from Grandma slide.

I'm no expert on how to go about this, and I'm definitely still learning along the way. But I can help by keeping my complaints to myself and making sure I have energy and a good attitude when I'm juggling caring for the kids and my mom at the same time. I focus on what my priorities are and try to let the rest go.

The hardest part is that I must recognize when I'm stressed and not push myself into an exhaustion zone, or it quickly becomes a big burden for me, my mom, and my kids. Nobody can do it all, and that’s okay.

Generations of caregivers

I know that for many people, caregiving is generational. For example, if you saw your family members taking care of someone when you were a kid, you might be more likely to become a caregiver as an adult. So as I'm caring for my mom, I'm also thinking about what I want to teach my children through it.

I want my children to grow up knowing that caregiving is an honor and an important responsibility to our elders. I want them not to be scared of older people. I want them to look back and remember that their childhood included caring for Grandma in a fun way, not a burdensome way.

Raising my young kids and caring for an aging parent at the same time is the hardest and best thing I've ever done. I am still learning and would love to hear from others how you talk to young children or grandchildren about dementia. Please share your advice and stories in the comments below!