Talking to children about dementia is hard, particularly if a close family member is involved. Children are incredibly perceptive when it comes to a change of atmosphere, especially if it involves adult distress or anxiety, and without some careful and clear talking they can often assume that any underlying tension is their fault.
To help with this, we’ve compiled a list of things you can do to help a child understand dementia, how it might affect them and their families, and ways to cope.
- Be clear and straightforward. Obviously much of this will depend on the age of the child, but, as when talking about death or dying, try not to use euphemisms which could be misconstrued. ‘Grandad has been diagnosed with an illness called dementia. It means he may start to change the way he behaves, or not be able to do all the things he once did’.
- Use accurate words Remember that children do not have the same negative connotations associated with words such as ‘Alzheimer’s’ and ‘dementia’; to them it really just is another word, so it is best to use it from the off. Using the correct wording means they are unlikely to misunderstand what is being said when they hear adults talking about the illness to each other.
- Be prepared for hard questions It may seem to you that children are asking odd or even uncaring questions, but it’s totally normal for children to be focused on the things that affect them directly. So you might reveal that dementia is affecting a loved one, only to be asked ‘But can I still go to Ella’s party on Saturday?’ or ‘Will I catch it from him?’. Let them know it’s OK to ask questions, whatever they may be.
- Link it to something they have already observed This can be a really useful way to root their understanding in the real world. So, for example: ‘You know how Granny has been told she has to stop driving? That’s because her doctor has told us she has an illness called dementia.’
- Help them find positives Remember to emphasise the good times. Take photos that they can look back on that show them enjoying time with their loved one.
- Find a way to help them connect Sometimes children feel awkward or afraid because they don’t know what to do. But sharing time doing craft, looking at something on an iPad or listening to music with the person living with dementia are all good ways to feel close to that person.
- It’s no one’s fault. In research carried out in Australia, children spoke often about the need to be told that their loved one wasn’t behaving strangely on purpose, that it was something they couldn’t help and it wasn’t their fault. This helped them to understand and accept the changes that were happening.
- Tell the truth It’s hard, but a child will want to know when Aunty is going to get better. Explain gently that there is no cure for this illness and that it will get worse over time. It may be hard for them to hear, but it is important as you will gain their trust.
- Read all about it For older children, books they can take away and read to themselves are very useful. For younger children, an appropriately chosen book at storytime can be a helpful tool. Alzheimer’s Research UK has this free online book you can read with your little one ttps://kids.alzheimersresearchuk.org/young-kids/grandads-hat/. There is also a list of useful books here https://www.youngdementiauk.org/dementia-books-children