Tips for telling children about a diagnosis

Telling a child that a person they love has dementia might be something you’re dreading. Find out what you can say and do to make it a bit easier on everyone

A dementia diagnosis can come as a nasty shock to everyone. While you’re all trying to come to terms with what it might mean and how you’ll cope, you may assume that any young children in your family remain, thankfully, oblivious to what’s going on – and perhaps that’s the way you’d like it to stay. After all, nobody wants to see children getting upset. Maybe it’s better to protect them from the truth for as long as possible…?

However, there are a few good reasons why it might be better to tell children about dementia rather than hide them from it.

They’ve probably guessed ‘something is wrong’

Young children can sense tension, sadness and stress around them – even if they don’t say anything about it – and might be feeling worried and confused anyway.

They CAN cope with the truth

In fact, it may come as a relief to finally be told why the people they love have been upset, crying, irritated, sad and generally behaving in a peculiar way.

It might be good for them

If children are able to see the adults around them coping with a difficult situation and managing the painful emotions it brings with it, they can learn valuable skills for life.

What if I am their parent?

If you’ve been diagnosed with young-onset dementia and need to tell your own children about a diagnosis, the ideas below are still relevant but go here for more specific information and support

So…who’s going to do it?

Ideally, the person with dementia should be the one to explain their condition, especially if the diagnosis was recent and they are only mildly affected.

Good idea

If the person with dementia would prefer not to discuss their diagnosis face-to-face perhaps they might be happier writing a very simple letter. For example, ‘I’m having memory problems/my memory is playing tricks on me. Sometimes I might even forget your name – how silly is that? But it doesn’t mean I don’t love you and have always loved you since the moment you were born.’

Another close relative who has an easy relationship with the child could then offer to read the letter to the child and suggest it’s kept in a safe place where they can look at it whenever they want.

4 tips for telling young children

1. Be clear – use words they understand. Dementia or Alzheimer’s are strange sounding words which will probably mean very little. ‘Memory problems’ is likely to mean far more.
2. Be honest – explain that your memory problems might make you behave in odd ways sometimes.
3. Be patient – listen to their questions and answer them as best you can – some of the most common ones are listed below.
4. Give ideas about how they might be able to help – and use humour, too. For example ‘If you see me put my door key in the fridge or try to go to bed wearing my hat, will you please tell me?’

Common questions they might ask:

Q: Will I get it too?
A: No you won’t!
Reassure them that your condition is not contagious like a cold and that nobody else can ‘catch it.’

Q: Is it my fault?
A: Absolutely not!
Children often blame themselves when something ‘bad’ happens so it’s really important that you make it clear that nobody is to blame for your illness.

Q: Are you going to die soon?
A: I really hope not!
This is a perfectly natural question for a child to ask and it deserves an honest answer. Explain that whilst nobody knows what will happen in the future, you have every intention of being around – and remaining in their lives – for as long as possible.

Good to know

You might be pleasantly surprised by how accepting young children can be of a dementia diagnosis, providing it’s explained clearly and honestly to them. Many adults report that children seem to have an instinctive ability to understand what dementia means, and simply ‘go with it.’ For a person with dementia, this attitude is often hugely appreciated.

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