Alzheimer's Dementia.. Progress, timeline etc?

[Stumblingsideways]

I'm curious on other's experiences of Alzheimer's progression and timelines. How long from diagnosis to various care support to the end.

I know it's hugely variable and unknown, but I am by nature someone who likes a plan, and I'm struggling a bit with the unknown timeline. Dad (81), diagnosed 2 yrs ago, had symptoms +2 yrs before that. Still quite fit, living alone and managing with our (me and sis) support - just. I also manage his money and I really want it to last to find his care until the end so he never needs to rely on council funded care. it's a constant nagging worry for me.
I probably need to be told to take each day as it comes and enjoy the good moments with him, I do try..

I know where you’re coming from, I’m the same. It’sa continue unknown tho, he sounds as though he’s doing really well and it’s slow progressing.
When my was diagnosed 18mths ago the dr said it was slow but she’s declined quite fast.

My DM was diagnosed at 65 she now 90.
The memory clinic longest patient at present.
She live at home with carers until 87.
It's really hard to say I think.

I can’t comment because in our case it was vascular which is slower and presents differently.
I wanted to say though I understand why you’re asking as I was the same - the money lasting is important. I read up and apparently the average life expectancy in a nursing home is 12 months with nursing care and 24 without.
https://www.bgs.org.uk/resources/end-of-life-care-in-frailty-care-homes#:~:text=medications%20is%208.-,Identifying%20need,will%20need%20it%20straight%20away.

Re money we purchased a care annuity for Mum to cover her fees so her capital never goes down.

My mother has mixed dementia. Diagnosed in 2013, but symptoms over the years before that. I tried home help and live in carers with me going every week (she lived about 1.5 hours away), before moving her into a care home near me 8 years ago when it no longer became sustainable. I know people say the average is 2 years, but she is still very physically fit at 86 just now mentally no longer present.
dementia medication now slows the decline but it cannot stop it; however I do think it means people living longer with advanced disease.
If I had my time again I would have bought an annuity. It seems like a very large upfront payment but it will cover the shortfall between income and care home fees. My mum is in a nice but not luxury london care home. It is 8k per month. I think people have no idea what the costs involve.

Thanks all for sharing. Pretty much confirms it's impossible to know even broadly what the timeline will be.

@Stumblingsideways Have you applied for Attendance Allowance?

Don’t worry too much about Council funding for care homes. They’re usually the same homes, just not at the expensive end. What you lose is the on site hairdresser, restaurant etc. By the time your dad goes into a care home, those things won’t be of interest to him. So concentrate on a) helping maintain his lifestyle b) not running yourself into the ground. Don’t second-guess the future.

A friend took out an annuity for his father when he was diagnosed. Father was dead in 6 months.

I didn’t take out an annuity when DF went into a nursing home - DF was 95 with heart disease. That was 7 years ago. He’s still going strong.

@MereDintofPandiculation yes, he gets AA fortunately and has a good pension. So really if he needed care he should be ok to pay for some time.
He's physically fit, so it'll likely be his dementia which will determine his decline. He'll probably truck on for years yet.

My dad showed symptoms at 80 and died at 87 - last 2 years in a home after a fall. I found this book extremly helpful Dementia: The One-Stop Guide: Practical advice for families, professionals and people living with dementia and Alzheimer’s disease: Updated Edition (One Stop Guides) https://amzn.eu/d/f3WhKaq Also Dementia UK have an excellent helpline

FIL was diagnosed in 2016 I think, his dementia has progressed very slowly - he's only just progressed to one care visit a day and was safe at home alone until the past month or so.

His physical health is poor and has been for many years, I think he will die with dementia rather than "of" it.

Dad was diagnosed aged 73, but we’d known for a couple of years it was likely he had Alzheimer’s. He was physically very fit and still doing mountain walking in the early days. Me and sis managed to keep him at home for 7 years, although at great cost to our mental health at the time. He was still very active and fit when we moved him to a care home; his physical fitness was the biggest risk in the end, we couldn’t keep him safe at home unless we were there 24/7.
His physical fitness then declined rapidly after a year or so in the home. The first year he paced the corridors all day every day. I think in the end the lack of fresh air and proper exercise slowed him down, combined with the decline in cognition. Dad passed away of pneumonia age 83, 3 years after being in the care home, 10 years after diagnosis.

Having been along this road, my only advice is that your DF will always be one stage worse than you think he is. That you should put things in place before they fail. That you need more help than you think you do. That once you break (through stress and doing too much) you will not bounce back - so don’t break get extra help in place.

i wish I’d known before i walked that road.

Have you got POA in place? Things can change quickly so it’s important to get this sorted while you can - if that’s what your Dad wants of course!

My dm was diagnosed in 2016 and died in hospital in 2021. However I think 2 events hugely contributed to increase the speed of her decline. She was doing well at home without carers and driving until 2017 when she fell and broke her hip. Her memory and general frailty declined rapidly from that point on. Then came along Covid. I strongly believe the disruption to her routine - not being able to meet her friends or go to church - exasperated her dementia and fragility. She was eventually admitted to hospital due to fainting episodes in 2021 and died 2 weeks later.

My mum started showing strong symptoms mid 2019 when she was 76. She lived alone and I think she had been masking lesser symptoms for about a year. I got her to agree to go with me to her GP in December 2019 and she was given a consultant appt in early 2020 but we went into lockdown and it was cancelled so she got her official diagnosis in September 2020 by which time a diagnosis wasn’t really necessary as it was plainly obvious. She had Alzheimer’s and Vascular Dementia.

Lockdown really accelerated her symptoms due to the isolation and confusion over the whole Covid situation. It was hugely stressful for her and me. Bubbles made it a bit easier but she lived very chaotically at a time when there was no support.
She declined fast, not just cognitively but her mobility. She also pretty much stopped eating. She would reject the carers but eventually went into a care home in Autumn 2021. She died in Spring 2023, only 4 years from when it became noticeable.

Same. Covid lockdown was terrible for mum’s dementia.

No one tells you and a lot of medics look horrified if you ask. Which is rude and unhelpful.

OTOH, no one can be sure - any estimate you get, double it. The final stage - bed bound, mute, no movement or consciousness, can last 6 years. To be dark but truthful, keeping a heartbeat going isn’t that difficult now.