Dementia is difficult for most of us to understand, so explaining a disease that affects many people in many different ways to a child might feel a little overwhelming. The thing is, however, children ask questions, and they notice things, and their cogs are always turning, so when someone they know and love has dementia, it’s important to have honest conversations about what’s going on and what might happen next.
Being upfront can feel scary as our natural impulse is to protect our children at all costs, but by talking to them about what’s going on, we can include them in part of the journey rather than leaving them behind.
Read on for some tips and advice on how to talk to children about dementia, and some resources that might help.
How do I broach the subject? Books can help…
Every child is different, and you might find some will ask questions and open the channels of communication without you having to prompt them. Other children might not voice their feelings as openly. One good way to start discussing dementia is to read some books on the subject.
You don’t necessarily need to announce “this is a book about dementia” but rather start reading and see how your child responds. They will likely see similarities between characters in the book and their own life, and that connection is a fantastic way to let them know they aren’t alone, making everything a bit less scary.
There are lots of books aimed at children that can help them understand what dementia is, and how it might affect their loved one and the family as a whole. Click here to see Alzheimer’s Society list of books that might help your little person to understand everything a bit better.
Dementia care consultant Dr Gemma Jones also published a really insightful book on the subject which you can order by clicking here.
Ongoing communication is key
We know that dementia progresses through different stages over time and that it will continue to affect someone’s behaviour or personality. It’s really important to keep having the conversations with children to help them understand what’s going on and why they might be noticing changes, both physical and behavioural, in the person they love. Believe it or not, having all of the facts can actually make children feel less worried as they have a better understanding of why things are happening.
Remind them that their loved one is still their loved one
It's also vital that your child knows their loved one is still exactly that – a person that they love. Just because they have dementia doesn’t mean they’re someone else. Let them know that dementia doesn’t define someone, and that just because their loved one might do or say some things that they didn’t before, it doesn’t mean they are a different person.
Come up with activities your child can do with their loved one
Working with your child to come up with with activities or ways to spend time with their loved one will keep them feeling really involved in everything that’s going on, in a way that they can engage with and understand.
Why not try one of the following:
Any or all of these will help make each visit special. Fun activities that everyone can get involved in can help your child look forward to visiting their loved one, rather than feeling anxious about it.
Answer questions as honestly as you can
Dementia can feel scary for all of us, and whether you’re six or 60, talking about it can really help. After visits or time spent with their loved one with dementia, your child might have questions like “why did grandma keep asking me how old I am” or “why did grandad keep getting his words muddled?” and although it can be tempting to downplay these things, try discussing that they are part of dementia. “Grandma kept asking your age because dementia has affected the part of her brain that helps her remember things like that, but she knows how special you are and is so happy when we go and visit.” Honesty and reassurance can absolutely go hand-in-hand so where possibly, try to frame your answers in a way that incorporate both.
Keep talking as a family
The more you talk about dementia and everything that’s happening to your loved one and your family, the easier it will feel to answer questions, plan what to do on your visits, and generally discuss the changes that are happening now, and what might happen next. Keeping things a secret or not sharing what’s happening with your child’s love one can make your child feel even more anxious and worried, so although it can feel upsetting or difficult to involve the whole family in what’s going on, ultimately you might find it’s the best thing for everyone.
If you’re worried about talking to your child about dementia, why not come along to one of our Alzheimer Cafés and talk to us. We can offer advice and support for you and your family which we hope will make difficult conversations like these that little bit easier. Also keep your eyes peeled for our special workshops all about talking to children and young people about dementia. We’ll add these workshops to our social media pages and on our website as soon as we have dates confirmed.