Explaining Dementia To A Child

My husband’s grandma was diagnosed with vascular dementia in her 80s, when he was old enough to fully comprehend the disease and its effects. The impact of dementia on family (both emotional and practical) is huge, but just how do we go about explaining dementia to a child?

To find out, we spoke with Alex Winstanley. Inspired by his own experiences with his grandma Mary, he’s written a book, ‘My Grandma Has Dementia’, aimed at 4-11 year olds to support their understanding of dementia in a positive and realistic way.

Explaining Dementia To A Child

Alex grew up with his grandma living nearby and they were extremely close, spending time baking cakes and making a mess in the kitchen!

Whilst Mary only got a dementia diagnosis when Alex was 18, there were signs of the illness long before this and looking back, Alex can see that his mum was trying to shield her children from the worst of it.

She was Mary’s sole carer, visiting three to four times a day and speaking with her on the phone countless times.

She understandably wanted to protect Alex and his siblings but Alex says that even as a kid, he knew something wasn’t right.

As a result, he passionately believes that children should be made aware of different health conditions so that they can come to terms with it. Here’s some ideas for how you can explain dementia to a child. 

Children Are Resilient And Inquisitive

In his book, Alex has a scene at the doctor’s.

“It’s dementia” said the doctor, the word made me feel scared. She explained it very clearly so that we felt prepared.

Bringing kids into the conversation early and explaining dementia to them in a way that they can understand and take on board is key.

Being open and honest will encourage them to ask questions and process what is happening to their loved one. They will also feel empowered and more in control of the situation – it could even show that they could go to the doctors if this was suitable. And remember, their support could in turn help you too.

Some Conversation Starters

• Ask them how they would describe memory and what memory means. For example, this could be “remembering” and “where I live”. There’s no right or wrong answer here, and your child’s age will also dictate their answers.
• Find out how they think someone would behave if their memory isn’t working so well. Chances are they will talk about real-life events they have seen, such as their grandparent forgetting who is on the phone.
• Explore with them how their grandparent may be feeling – and how you could support them.
• Explain why dementia occurs. Alex’s book describes this perfectly with “the cells inside Grandma’s brain will struggle to work as well.” Obviously depending on your child’s age and understanding, you can go into more detail.

If your loved one has dementia and you don’t think they can safely stay at home for much longer, read our article on ‘when is the best time for someone with dementia to move into a care home‘.

They’re Still Your Grandma Or Grandpa

At any age, it’s so important to remember that dementia is a mask and your loved one is still there. Let your children know that although the relationship might change on the outside, on the inside they will still feel those feelings.

Telling your child about dementia will help them process what’s happening, so they can be patient and calm with their grandparent – instead of being confused by their behavior.

Funnily enough, Alex has found during his own experience and book research that kids often grasp being patient more than adults do – so we should give them more credit than we sometimes do!

We’ve written all about our favourite dementia-friendly puzzles and games, great for helping the whole family stay connected.

How To Talk To Someone With Dementia

Inspire your children with ways they can connect with their grandparent (and see what they can come up with too!).

• If your child isn’t sure what to talk about, start a conversation on a common interest such as school. They can tell them about their day, their favourite subject, their exams and ask them about their experience. These are common interests which could resonate and which your child can speak freely about whilst stimulating their loved one and including them in the conversation.
• What do they love to do with their grandparent? Alex’s grandma was a cake maker and they always baked together, so speaking about that always got a reaction.
• Ask your children to create a reminiscence box based on their shared memories. Fill a shoe box with photos, books, utensils – even play music which they have both enjoyed together. These props will help conversation flow more easily (even if it is one-sided).
• There are some fantastic reminiscence style games and puzzles from Relish which can help move conversation on naturally too. From jigsaw puzzles of the fair to animal aquapaints and magnetic picture boards of hobbies such as tool boxes and sewing kits, these beautiful products are designed to foster conversation and spark joy.
• Remind your kids that it’s OK to bring familiar jokes or a sense of reassurance into conversation. Alex used to answer “Buckingham Palace” when his grandma asked where she was which she liked! Or, you might want to say “Grandma, you’re at the care home near where I live” to signal your support.
• Sometimes, you don’t even need to talk. Just being with them, holding their hand is enough. Touch and sensory stimulation is so meaningful to people living with dementia.

Knowing how to talk to a loved one with dementia doesn’t always come easily. By reassuring your child and explaining to them what’s happening, they will in turn feel more relaxed and at ease with their grandparent and continue to foster that loving bond.

Dementia And Children

Just as with adults, loving someone with dementia can make children feel a whole host of emotions.

• Confused: Seeing someone you love and know well act in a different way can be confusing. Learning about dementia can help your child feel less confused about why they’re behaving like this.
• Sad: Just as you need to come to terms with your own parent / child relationship changing, they need to do the same with their grandparent. Of course you will all feel sad, and supporting each other is the best way through this.
• Angry and frustrated: This could be because their grandparent isn’t who they were previously, or because family dynamics have changed (maybe you’re busier caring for your loved one so have less free time for your child). Give your child the chance to express how they’re feeling and try to find collective solutions.
• Embarrassed: They could be embarrassed of how their grandparent is acting, or that they’re not the person they were before. Remind them to explain to their friends what dementia is, and to own the conversation. This should stop them feeling embarrassed. Take the time to talk with your child about your grandparent’s past and how much they love them, so they remember who they are really are.
• Guilty: They may not want to spend time with them, or be relieved when it’s over. Remind them it’s OK to feel like this, and why you keep going to help and see them. It’s because you’re family and you all love each other.

With the current (and needed) spotlight on mental health and the importance of supporting people, the best thing we can do for our kids is to help them understand and explore dementia and talk about how they’re feeling.

Conclusion

When a loved one has dementia, it can turn all our world’s upside down. Explaining dementia to a child is so important so they feel part of the narrative and understand what is happening, but it can be hard to know where to begin. We hope this article along with insight from Alex Winstanley and his understanding dementia book will help your family.

To find out more about Alex Winstanley and his Happy Smiles Training go to www.happysmilestraining.co.uk.