What do you tell young children about Alzheimer's?

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MIL was diagnosed with Alzheimer's when I was pregnant with our first child, DD who is now 4. We also have a 1 year old DS.

The disease is now advanced enough that I think DD might start noticing that her grandmother is a bit 'strange'. She has retained most of her kind personality so far, although she seems to find it stressful having children around and has started to snap at them more and more often. They upset her with their noisiness and unpredictability, especially the little one. She was always a great lover of children but not any more. She is also confused a lot and doesn't always make sense when she's talking, which DD is old enough to notice now. Physically she is still sort of OK, still continent but needs help with various things, but all this is easy to shield the children from. She still lives at home with FIL. We live quite close and see each other fairly frequently (few times per month).

We don't really know how to handle it. Would it be better to keep the children away from her as far as possible? This might upset DD but I suppose being snapped at might upset her more in the long term - I don't think it would upset MIL.

We haven't told them anything so far. Obviously DS could not understand it if we did, but perhaps it is time to tell DD that Granny is not well? I'm just not sure what to say. DD knows about illness and she knows about death, but something in my gut tells me that she might not be ready to know that her grandmother has an illness that is not going to get better. Perhaps it would be best not to tell her anything until we really have to, like when MIL can no longer live at home? DD hasn't asked any questions about it yet, but I can see that she finds some things odd.

I'm all for being truthful with children but when the truth is so cruel and bleak, is it really fair to saddle them with that so young? If your children had a grandparent with Alzheimer's or dementia, what did you tell them and when?

sometimes its easier to explain things by reading a child a book about the subject, like this book here. you can read it to your dd, and say that granny might be a bit forgetful at times, or she might get a bit snappy, but she loves your dd very much and she needs to not listen to granny when she snaps. I think i would leave it at that for now. all the best x

My mums dementia became apparent when ds was 5, and I'm afraid she wasn't very nice at that point. We changed visits so that we only saw her for short times, and explained to ds that her brain wasn't working very well now.
It's not been easy, and at times ds has been distressed by her behaviour and the things she says to be totally honest. But by really acknowledging how hard it can be, and managing interactions a lot we have got by - ds is 13 now and mum has no idea who any of us are and has no interest at all.

I know you say you are a close family, but you do have to have first allegiance to your children and protect them. Nothing is gained by stressing your MIL and the children.

Initially I told mine that she has an illness you can’t see in her brain which stops her memory/brain working properly. That this meant we had to be kind and patient and answer questions even if they were the same one, or ones they thought were obvious. As things progressed we've just explained that the illness means that sometimes things can upset or frighten her a bit and sometimes she might be cross or speak funny and again we just need to remember it isn’t her fault and be as kind as we can. We’ve said it is ok for us to feel upset or sad about it at times but being kind and patient is a bit like special medicine and even if we can’t see it working it will be making her feel nice inside. Both seem quite happy with that for now.

My dad has had Alzheimer's for a few years now. We found that the younger kids didn't really need to have it explained to them as they didn't really know any different. The older ones who had seen their grandad at his best understood what was going on whilst the ones in the middle were the only ones who needed to be told.

Agewise the younger kids were about 5/6, middle ones were about 9/12 and the older ones were late teens.

I explained it as an illness that stopped the person's (a great grandparent of my DC) brain working properly. Sadly, although our relative loved seeing children my DC found seeing them frightening once they were 2 or 3 ish, so us adults visited on our own.

Sorry that should have said brain and memory. My older child is still a bit worried about any mention of brain disease (several years after the relative died) and it makes me question whether I said the right thing though I do think it's best to be honest.

Also their great grandparent was never snappy or aggressive to them, but didn't make sense and struggled to feed himself, I think seeing that was scary. I didn't force them to continue the visits, once they started saying they didn't want to see great-grandad anymore that was that.

It's a tough call

We told our children that MIL was ill when the dementia was becoming obvious. We talked about problems with memory and understanding. I don't think we have done a great job as my 9 year old just told me that grandma has a chance of getting better, as one of his teachers parents has beaten Alzheimer's. I am sure that the teacher didn't say that , but I have just done some more explaining about it being an illness which hasn't a cure but rather one you live with.

We told my niece who was 6 at the time that our grandmother had a poorly brain which meant she wasn't her normal self. This put her at ease on visits

My two children have autism, so we've had discussions about their diagnosis, explaining it in terms of brain simply being wired differently and taking different paths sometimes so they need more time to travel those paths to get to the answers and such (processing). So when both their grandmothers were diagnosed with Alzheimers and dementia, we used the same type of discussion, telling them that their grandmothers sometimes had longer paths to follow to remember things, but that the Alzheimers is like someone is going through with a broom and sweeping away parts of the paths, so that sometimes they get a bit lost. I explained to them that it might seem scary, as sometimes they won't be recognised, but that it was probably quite scary for their grandmothers to feel lost, so we should be as reassuring and calm for them as we can, so they feel safe.

It's hard - I didn't want to terrify them, but as they are 9 and 12 (although developmentally delayed somewhat), I felt it was important to give them as complete a picture as they could handle.

Some nice resources here kids.alzheimersresearchuk.org/?gclid=CjwKCAjw9dboBRBUEiwA7Vrrzft1jnaRVl0w2ZCxRSht7NmZYCyw8KJNWfVxzsQ-x65ypLfle2H1GhoC4ksQAvD_BwE

The Alzheimer's Society also run Dementia Friend's sessions.

I was just going to link to the same resources as Meg.