Parents with dementia - what was the timescale and progress?

[Sittingontheporch]

I don't really know why I'm asking this as I realise that every case is different, but I'm interested to know first-hand experiences of how dementia progressed in your parents. And, sorry no way of sugar-coating this, if they died, what they actually died of, after how long post diagnosis and what of?

It's hard knowing with my DM as my dad hid it from us but we noticed speech difficulties in 2020, she went to the memory place in 2021 where she was diagnosed with mild cognitive impairment and 2022 she was diagnosed with dementia (prob Alzheimers).

She now has near zero mobility, can do nothing for herself and is completely reliant on carers. She still recognises her children but struggles with grandchildren and anyone else. She's very sweet, frequently tearful but not actively distressed.

She's 83 and I feel like she could go on declining for years and years. I read John Crace in the Guardian saying that his mother had just died after eight years of serious dementia. Aged over 100!

I don't want her to die, I just want to get my head around it. I think I'd approach it differently if I know we've got a decade plus. And I know it's all unknowable. Argh, gosh it's hard.

I'm sorted out my own POAs this week. It's taken me 2 years since the last family bereavement to be able to face doing it tbh. I have much more concerns written into my own health POA after dealing with 4 elderly relatives with dementia/cancer/strokes and would hate to become a burden to my DC when I have no quality of life. I know a POA can't cover everything but it should help them I hope.

MIL was diagnosed with dementia 3 years ago but had symptoms for a while before that. Diagnosed as Alzheimer’s last year and the current prescriptions are keeping it stable as long as she’s fed regularly. Physically she’s quite able, happy in herself, generally loves everyone but FIL. She has a live-in carer who is amazing, and MIL gets on with her really well. Recent diagnosis of leukaemia though, so we’ll see how things go.

Sorry, meant to say it’s standard forgetfulness and forgetting how to do things, loss of appetite and inhibition. She doesn’t know who me and DH are, but she knows she likes us, so we get a big smile.

It can vary so much. My Dm showed the first signs in her very early 80s, and went on to 97. However she came from a very long lived family and had the general constitution of a rhinoceros - she sailed through things that are often the beginning of the end, e.g. a broken hip at around 91.

OTOH the neighbour of a friend had the ‘galloping’ variety - only around 3 years from start to finish. IMO if you’re going to get it, that’s the variety I’d choose any day.

One of my grandmothers had a similar journey to your DM, except she died at 95 rather than 97.

Personally, I'd choose the slow kind, because both my grandmothers died peacefully of other causes before they reached the final sub-stages of dementia which would have left them bedridden.