How to Talk to Young Children about Dementia

Well hi there Careblazer!

I did a FB live Q & A several months ago and a Careblazer asked a really good question that I realize I’ve never done a video on. I want to talk about how to talk to children about dementia and how your kids or grandkids can get more involved with the person who has dementia. 

A lot of times, it’s really hard for kids to be around the person with dementia and to understand what’s going on. They may not understand why their grandparent is saying weird or mean things or even sometimes yelling, hitting, throwing. In some ways it can be scary and your child may not even want to be around the person with dementia. So let’s talk about this and some approaches you may want to take. 

If you would rather watch my video on this topic, click here.

Alright, back to children and how to help them understand and cope with a grandparent who has dementia. 

First of all, I want you to think about just how confusing this disease is to you. You probably understand more about this disease than most people, after all you’re spending your time watching this video. And even though you’ve been learning information and providing a lot of the care tasks, it’s still confusing, frustrating, and at times really heartbreaking. So imagine a young child who is seeing and watching the person with dementia. Can you imagine just how strange and confusing it would be for them to see their grandparent struggle with speaking, bathing, acting childish, and even saying hurtful things?

TALK ABOUT IT. 

Talk to the child about what’s happening. It’s okay to let them know that your loved one has a brain disease and they can’t control what they say anymore. That the disease makes them say things they don’t mean. Let them know that they are loved. You can talk to them about how it feels when grandma or grandpa said those things. And this is something that should happen periodically. If the child is around the person with dementia off and on and this type of conversation and reminder should happen off and on. It’s not enough to just say it once and feel it’s okay. It can be really hard for a child to hear awful things or see really difficult things in an older family member and so checking in and helping them process it is important. 

You can also decide to limit the child’s interaction with the person with dementia. That’s okay and it’s a personal decision. I’ve worked with families where the person with dementia did and said such awful things that they didn’t have the grandchild ever in the same space, at least never alone. And I’ve had families that encourage the interaction and feel that it helped bring compassion to the child about how people get sick and it’s important to care. Again, every situation is different and personal and that’s okay. For those of your whose children are around the person with dementia whether out of desire or necessity, I hope these ideas can help. 

Also, normalize how they feel. It’s confusing, it’s scary, it’s something that they don’t like. That’s okay. 

GIVE THEM BOUNDARIES

It’s okay to talk to your kids about what’s okay for them to do. Sometimes children feel that because someone is an adult family member they have to “take it” or “put up with it.” It’s okay to give her kids permission to leave or come get you or call you if they feel that their safety is at risk. For instance, let’s say the person with dementia starts throwing things at your child or starts saying some really awful things. You’ve already talked to your kids about explaining the difficulty of the disease and that sometimes they do these behaviors. But it’s okay to talk to them about leaving, not having to stay. Let them know they have power and control. 

GIVE THEM SOME TIPS

Since you are the primary caregiver of your loved one with dementia, you likely know their triggers. What tends to set them off and what they enjoy. Set your kids up for success. If you know your loved one really enjoys cars, tell your kid to have conversation about cars, or find a car show on TV, or have some car magazines they can share. Increase the chances of them having positive interactions by giving them the tools and ideas that can help rather than just having them go in blindly or without any guidance. Kids can feel pretty uncomfortable with what to say or do so help them out. 

PLAN AN ACTIVITY

When your child is going to be around the person with dementia, think of an activity they can do together. Perhaps a puzzle, a game, have them read a story together, and listening to music, look through photo albums. This can help your child enjoy actually spending time with the person with dementia and it reduces the chances of behaviors or difficult moments because the person with dementia is engaged in something they enjoy as well. 

DON’T FORCE IT

Finally, if your child really does not like spending time with the person with dementia, feels uncomfortable, and the person with dementia does have some of those difficult behaviors like saying nasty things or socially inappropriate behaviors, don’t force the child to spend the time. Sometimes in our minds we want so bad for our kids to have a relationship with their grandparent that just isn't possible. It’s an idea in our mind that we want but the more we try to force it the more negative and troubling it actually becomes rather than just accepting the way things are and it’s okay. Sometimes, the images and stories we create in our head about how we feel things “should” be or “wish” them to be create more frustration and distress for us and than just accepting the way things are. 

I put together a list of books created for kids and teenagers to help them understand what's going on if someone in your family has dementia. You can download your copy here. 

Careblazer, I hope this was helpful to you. If you have any questions you want to see me answer in a future video, go ahead and leave it in a comment below. I’ll be back next week, in the meantime, take care.