Mum has dementia: How to break the news to children and teenagers

It’s hard enough explaining to children that a grandparent or other relative has dementia, but what if the person who’s been diagnosed is their parent? Here’s how to make a difficult conversation more manageable

Could this be you?

You’re still trying to take in the dementia diagnosis of your husband or wife yourself, and you know that your children have a right to be informed, but you’re fearful of even broaching the subject because
• They may not understand
• They – or you – might get very upset
• They could ask questions you can’t answer
But it isn’t wise to keep putting it off…Here’s a few ideas that may help you get through it

Keep it clear and simple

Very young children may be satisfied with an explanation as matter-of-fact as, ‘Mum has a brain illness called dementia which is making it harder for her to remember or do all the things she used to do.’

Older children and teenagers may want a fuller description, including which form of the condition she has, and if there’s any medicines that might help. Again, keep the answers as straightforward as possible. For example, ‘Mum's condition is called Alzheimer’s disease. The doctor has given her some pills that might help but they won’t cure it.’

If they want to know more you could give further detail, such as, ‘The illness may make her act in a way that’s a bit odd, or you might find upsetting, but try to remember that she’s still the same person she always was, and she still loves you just as much as she always has.’

Be ready for their questions

Here are four common questions

Does it hurt? No it doesn’t hurt but she might get a bit annoyed or upset if she can’t remember something.

Can I catch it? Definitely not, it isn’t contagious.

Is she going to die? I hope not! She’s still as fit and strong as she was yesterday. We don’t know what will happen in the future – nobody knows when they’re going to die.

Is it my fault? Definitely not, no one is to blame. If she sometimes acts a bit weird it’s not your fault either, it’s just the illness.’

If they don’t seem convinced by your answers give them more information about dementia, or ask them to read this.

Five common reactions

Sadness and tears – a very normal reaction to difficult news so give lots of hugs and reassurance.

Relief – they probably sensed something was ‘wrong’ by the way you’ve been behaving or the tense atmosphere at home, so they might be pleased to finally know what it is. Any unpleasant interactions they may have had with the person with dementia can now be explained as part of their illness, which, again, can be a relief to many children and teenagers.

Embarrassment and fear – teenagers in particular may seem to be preoccupied with the impact the diagnosis will have on their lives alone, and what their friends might think. Again, this is perfectly normal and best handled by talking it through in a calm and matter of fact way.

Appearing not to care – they may be bottling up their feelings for fear of upsetting you. Encourage them to talk but if they don’t want to, consider finding someone else they might find it easier to talk to, such as an aunt or uncle who understands what they’re going through but isn’t quite so emotionally involved.

School work deteriorating and/or behaviour issues – this is another indication that they’re bottling things up and could be more worried than they’re admitting. Make sure their school is fully aware of what’s happening and is willing to provide the patience and support your child might need. Many schools also have counsellors on site who are trained to listen and offer support.

How else can you help?

Empower them – there are lots of books specifically designed to help children understand dementia.

Find peer support – talking to children the same age who are facing something similar can be hugely valuable, so check out local support groups or online groups and forums.

Let them get involved – if they seem keen, find ways for them to offer care. For example, older children and teenagers could help with shopping or trips out, while younger children could enjoy doing a creative project alongside the person with dementia.

Stay positive – there’s plenty life to be lived with dementia and making sure your children understand this is vital for their own psychological wellbeing. Of course they may see you getting upset sometimes – and that’s fine – but try to ensure that they also see you enjoying yourself and living life to the full.