Deciding how much to tell a child about a relative’s dementia is a difficult and personal decision for family members, with many afraid of upsetting them.

Here, John Ramsay, the founder of Shift8, which is bringing Dutch dementia care innovations to the UK, reveals how to talk to your children about dementia.

“When a loved one is diagnosed with dementia, it can also be a confusing time for their family as they adjust to their relative’s loss of memory and confusion as the dementia progresses. As adults, it is a situation we can process and understand, but children can often be left in the dark as to why Grandma suddenly can’t remember their name.

As our population ages, it’s a condition that will be present in nearly everyone’s life at one point or another and even if a child doesn’t have a close relative with dementia, it’s likely they’ll encounter it at some point, either through friends, neighbours or the wider community. As there are now over 850,000 people living with dementia in the UK, and with this figure growing, it’s important we introduce children to what dementia is.

Taking the time to explain dementia to young children will also help tackle the stigma associated with it, and help create a dementia friendly generation. Here’s how… 

Turn the dementia journey into a bedtime story

Dementia is a complicated condition to explain, with its multiple symptoms and causes, so it is important to adapt your language to make it as easy for your children to understand. A great way of doing this is turning the explanation into a bedtime story. If you’re feeling creative, Alzheimer’s Research UK has a great resource which explains dementia to children and will give some inspiration on phrasing.

If you’re unsure on how to tackle it, there are some great children’s books which explain it for you, including Juliet Rix’s Travels with my Granny, which offers a simple explanation of dementia and why someone with dementia might behave differently to others.

Finding activities to do together is a fantastic way of channelling energy and effort and can mean those trips are meaningful for everyone.

Put them in their relatives’ shoes

It’s useful for children to understand how a person with dementia sees the world, as it will help them understand how to behave and stop them from being afraid. When you explain the changes they might see, remind them that while Grandpa might behave differently, they are still the same loving person they were before, but these changes are out of their control.

While dementia affects everyone differently, some of the more common symptoms are confusion, memory loss and short tempers, so I would start with those when you explain the changes. A person with dementia is often confused and this can make them sad and angry, especially if someone tries to change their situation. Imagine thinking you were in the supermarket, and someone tried to help you into your pyjamas – you would be confused and annoyed. 

Give children these examples and show them the importance of giving their relative the space to be where they think they are.

Encourage them to be positive around the person with dementia

When I was younger, my Grandma Clare was diagnosed and I remember being told to be kind to her, and we were. She would laugh at everything we said and did, and now looking back I can see how important that was for both of us.

A person living with dementia will struggle with facts, but their emotions remain the same, so even if they don’t remember a visit, they’ll feel happy. While it can be frustrating for the child when their loved one repeats themselves or says something wrong, encourage them not to correct the person, even if they know what they are saying isn’t true, as this can be muddling for the person. And even though it can be frustrating, tell them to keep trying as ultimately it will make them happy.”

Article by Maria Lally published by The Telegraph on 21 May 2019

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