Telling your teen or young adult about a dementia diagnosis is going to be hard, but not impossible. Here’s how to make a difficult conversation more manageable.
If you, or someone close to you, has recently been diagnosed with dementia, you’re probably still trying to take it all in yourself…so how do you broach the subject with a teenager or young adult? After all, they have a right to be informed, but you’re bound to be worried; what if they get upset? What if they ask questions you just can’t answer? Here’s a few ideas that may help you get through it
Keep it clear and simple
1. Start off with a straightforward explanation, ‘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.’
2. If they want a fuller description, you could including which form of dementia she has, and if there’s any medicines that might help, keep the answers as clear 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.’
3. If they want to know even 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 prepared for
Sadness and tears – a very normal reaction to difficult news so give lots of hugs and reassurance.
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.
Relief – they may have 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.
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.
Be ready for the BIG question…
Is she going to die? Keep your response honest and straightforward. Try something like, ‘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.’
How else can you help?
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. Start by going here.
Let them get involved – if they seem keen, find ways for them to offer care. For example, they could help with shopping or trips out.
Empower them – they won’t want to read a picture book…but they might read this carefully crafted, entertaining guide book Can I Tell You About Dementia? By Jude Welton, which is recommended for anyone aged over 13.
Try to stay positive – there’s plenty life to be lived with dementia and making sure they understand this is vital for their own psychological wellbeing. Of course, they may see you both getting upset sometimes – and that’s fine – but do your best to ensure they also see you enjoying yourself and living life to the full.
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