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Dementia – what do we tell the children?

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Right at Home has lots of experience of working with families to care for those experiencing dementia, in its various forms. One question that families often struggle with is how to explain to young children what’s happening to Granddad, or Auntie.

Alzheimer’s and dementia are long words that won’t mean anything to a child. They may understand disease, though, and regard it as something to be frightened of, something that maybe they can catch. Children, even very young ones, notice more than many adults give them credit for. They’ll know that an elderly relation or family friend is changing and they deserve to be involved and informed.

So, how to explain dementia to children? If it’s not too late in the progress of the condition it’s best talked about by the person who has the disease. If Grandma can explain that, as we get older, some of us will sometimes not be able to remember things, but that doesn’t mean that we – the elderly relation and the small child – can’t still spend time together. Indeed, it might be that the child will be able to help the older person, by remembering for them, like where things are (keys, glasses, foodstuffs) or when things (mealtimes, appointments, favourite TV programmes) happen.

Explain that as time goes by, you might forget a grandchild’s name or use the wrong one. Tell them that it doesn’t mean that you don’t love them any more, but just that your memory is playing silly tricks. Being open with children wins their understanding and gets them ‘on-side’. A child might ask if they can catch the disease by being near you. Tell them no, that it’s something happening to you alone. They can’t catch it like they might catch a cold.

As dementia develops, seeing an elderly relation or friend becoming more mentally and physically impaired may worry a child. If the question has been pre-addressed the child will probably decide that they want to carry on visiting, because they’ve been involved in discussing the illness and how it might progress.

If, in your family, dementia has already developed past the point where the person themselves can explain directly to the child, then the parents can take on the role of explainers. A little subterfuge can help – the explanation can be dressed up as a letter to them from the relative or friend. It might read like this…

“Granddad is having some memory problems, and I wanted you to read this when I can’t tell you everything myself. We have spent lots of lovely times together, like when you came to stay and we did (personalise this bit – fill in some happy occasions). As I’ve got older my memory has started to play tricks on me, and sometimes I can’t remember what we did, or where or when. That doesn’t mean that I didn’t love being with you, and I still do, even though sometimes I can’t remember how to show it. Sometimes I can’t even remember my own name, so I might also forget yours, or even call you the wrong name. How silly is that?

I might have problems talking with you, or I might not be able to answer your questions, or forget that you are in the room. It doesn’t matter; I will still love you just as much as the first time I took you from mummy’s arms. I love you and still want to see you, even though I may not be able to show it. As time goes by, I might get sicker still, and I’m sure your parents will explain all this to you. Just always remember I love you.”

To sum up, it’s best to involve young children as early in the progress of dementia as possible. Keep them informed as the problem progresses – if you don’t they will notice and feel excluded. Ideally, your loved one who has the disease will be able to explain before things develop too far, and may even be able to write a letter like the one above, for the day when meaningful face-to-face communication becomes impossible.

If you’re in this situation, or you can see it approaching, anticipate the problems and address them openly. At Right at Home, we’ve found that is what works best.


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