Do you both have kids and care for someone with symptoms of dementia? Or maybe you’ve been diagnosed with dementia and want to talk to your family about it. How can you talk to children about things like Alzheimer’s Disease or other dementias?
When I was little, my grandfather began developing dementia (probably Alzheimer’s). Honestly, I was scared. I was confused and felt completely helpless seeing this man I’d always looked up to getting…well, he was acting kind of strange.
It started out with little things: he’d trail off during a story or he’d forget where he put things. He didn’t recognize my brother when they ran into each other at church. Then he had to stop driving. Then he started forgetting common words like “fork” or “brush.” And it went on from there, for years…
Obviously something was up, but no one was really talking about it.
It scared me: as a kid and teenager I felt like my family only avoided discussing “really bad” things. We weren’t discussing this: it must be “bad.”
So I withdrew. I didn’t know it at the time, I didn’t mean to, but looking back I realize that’s what I did. Because I didn’t know what was going on, I found my grandfather’s behavior scary, unpredictable, and a little embarrassing.
I’m tearing up a bit as I write this; I still feel bad about it. I didn’t know any better, of course, but I hate to think I may have hurt his feelings. (Yes, even if he didn’t recognize who I was. Check out Emotions without memories for more on that…)
So I wanted to write about this topic, how to discuss dementia with kids, so that others may have a better understanding of what’s going on and what it means.
How much detail should you go into? It depends both on the child’s maturity and interest. Some may not want to talk much about it; that’s fine.Because of my experience, my first thought is: if your children spend any time with someone with dementia, talking about it at all is better than avoiding it. Kids can tell when something’s wrong; you’re probably not protecting them by avoiding the topic.
Adolescents quickly grasp the actual or possible symptoms, because by the time the diagnosis rolls around, they’ve probably experienced a lot of odd behavior. They usually feel enormously sad – yet relieved – to learn that an illness has caused the changes in their loved one. But some are surprised and relieved to hear how much those behaviors can vary from one patient to another. Adults need to remind kids that no two patients are exactly alike, and no single patient exhibits all symptoms. Unpredictability is the only constant.
When Dementia is in the House: Discussing Dementia with your Kids, Life and Minds
(published by Canadian Dementia Knowledge Translation Network)
Reassure the child that any and all emotions are ok; there is no “wrong” way to feel. And if your child is upset and you remain calm, perhaps mention that, “while you must remain strong for the family, these sentiments affect you, too.” (Life and Minds)
Of course, it’s also alright if you’re a little emotional when you talk about dementia. Whether you’ve been diagnosed with dementia yourself or you’re a caregiver, it’s pretty safe to assume that you have a lot on your plate; it’s fine to be emotional about this when you talk about it. Just don’t burden the child with your feelings. Make it clear that letting yourself feel your emotions is healthy and emphasize that the child didn’t do anything to upset you. A few more thoughts on this can be found on When Dementia is in the House: Special Challenges: Expressing Emotions to Your Children.
It’s important to encourage your children to express their emotions and ask questions if they have any. Let them guide the conversation.
For younger kids, it may be enough to explain that Grandma’s brain is sick. Just like they get sore throats when they’re sick, their grandmother forgets things because she’s sick. But it’s not contagious.
As children get older you can be more straightforward and detailed. And even if you feel like you, yourself, don’t know that much about dementia, you need to bring up the topic. I’m attaching resources at the bottom of this post that might be helpful to you.
If your son or daughter is interested in learning more, encourage them to ask questions. Then answer them honestly (toggled to their maturity). Remember that “I don’t know” is an acceptable answer. It can lead to an opportunity to connect as you look for information together. Or it may be that something is simply unknowable; depending on your child’s maturity, that’s alright to acknowledge, too.
Informal can be best
Some advice: you needn’t have a long conversation that extensively details everything you know about dementia, all at once. It’s enough to mention it one day, to say how you feel about it, to ask if they have any questions. And if your child says “nope,” move on for now.
Make it clear that the topic is not “off limits” and that, should anything pop into their minds, it’s always alright to ask.
If you only remember 3 things:
If they have contact with anyone with dementia (Alzheimer’s disease, etc.) then it’s important to discuss it with your children; you’re not protecting them by avoiding the topic
Let your child(ren)’s interest and maturity guide the conversation.
Talking about dementia should be an ongoing conversation with your family. There’s no need to overwhelm a child with all of the information at once
When Dementia is in the House (from Life and Minds, the online publication of Canadian Dementia Knowledge Translation Network, or CDKTN)