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.

My mother was diagnosed with dementia in 2013, a very clever woman who masked for a few years before hand. She went into a nursing home in 2014 age 75 because we couldn’t keep her safe, she was leaving the house in the night, looking for her mother and trying to go home.
Once in the secure nursing home , she did well physically, regular meals, quite mobile and relatively content (although she waited for her mother to come for a long time). She trundled along like this, sometimes more, sometimes less lucid, always pleasant and nice which was her real personality. Her most ‘difficult’ phase was when she wanted to go home to her mother and I was the one who wouldn’t let her go. That crankiness passed once she was calm and relaxed in the home.
She declined physically in spring 2020, no obvious reason for weight loss, just a loss of appetite. Still spoke, recognised my sister and me as hers most of the time, during our weekly , socially distant visits, although who exactly we were wasn’t important.
She got covid in January 2021 and died within a week, which was a huge shock as she had never been ill. I know in my heart that her Covid death spared her the final years of dementia, bed ridden, silent and unable to eat, although I still feel guilty that I couldn’t sit with her, in her final hours. Everyone is different though, the great unraveling that is dementia has so many different paths.

7 years for my MIL, though there were signs with hindsight maybe 5 years before that. Last 4 years in a nursing home, speech went from standard phrases to jargon to nothing. Finally fell out of bed and died a week later.

Most of the replies indicate around ten years survival. I’ve also noticed that the average age of death is mostly in line with non-dementia patients.

Many don’t realise that the official average life expectancy is different to typical life expectancy for elderly people. This is because ‘average life expectancy’ includes data for those who have died in their youth, or in their 60s from cancer, for example. Mathematically speaking, the most ‘popular’ age at death is in fact around 87 for men and early to mid nineties for women.

Firstly I’m sorry, it’s a horrid disease.

Aunt had it, she recognised us until the end. She was happy and ate well, she believed she was in a hotel. She could walk if aided. She died from pneumonia, no symptoms we were just called one night to say she had gone. She was 86 and had been there for around six months. She was never distressed.

Vascular Dementia. Diagnosed 2020, still doing OK. In their early 90s. I live in to look after them.

I know it sounds bad, but I am hoping a stroke will take them before the worst of it.

So many sad stories. It's such an inversion of normal rules of life that the very saddest stories are the ones where the person lived the longest - not only for the sufferer but also by their family.

The poor MIL of @iggleoggle having so many years with her mother being ill only to get dementia herself six years later. Does your partner worry about dementia? Every time I forget the name of a film or can't find the word I'm looking forward, it triggers paranoia in me.

@stayathomegardener 25 years? That fills me with horror, I'm not surprised you've had enough. I'm not looking after my mother directly, but even the emotional weight of visiting, looking after her money, chivvying the care home, organising outings, getting irritated by my brother and his lack of visits... well, it feels like a constant thing gnawing at me. If she lives to her mid nineties, I'll be in my seventies by then - I don't know that I'll be cycling the 15km to her care home on a bi-weekly basis by then.

And quite a lot of posters saying a decade, maybe longer, including many years in a care home in a very bad way.

@Toodaloo1567 really interesting what you say about life expectancy being in line with the normal life expectancy of elderly people. My dad died recently at 88 (not of dementia) having been very illness-free until 85 - his father died aged 86 so they average your 87. My maternal grandmother was 93 when she died - she was much healthier in her 80s than my mother (but was immobile for last three years of her life). I wonder if my mother is hardwired to live until then too. Like unless you get cancer or have a heart condition, you'll carry on going with or without dementia until something like pneumonia takes you off.

@unsync gosh credit to you for looking after them. There are many practical reasons why I can't do that but mostly it's because I really really don't want to. That's the other thing that gnaws away at me - the guilt that I'm not doing more.

Don't feel guilty. This is my choice. My sibling is adamant that she couldn't do it. They do respite so I can get a break, but it's a struggle for them.

We are all different and that's OK. I always say on threads that ask about care that no one is obliged to do it. You have to want to do it, otherwise it would be a disaster for everyone. Your parent wouldn't want you to sacrifice yourself when there are perfectly acceptable alternatives (albeit you have to hunt them down).

If it ever gets too much for me, I will be looking for alternatives, so don't think I'm saintly!! 😇

3 years from diagnosis but the primary cause of death was a stroke, secondary cause dementia. DF was just about to move into a care home and I feel like this was actually the better outcome, he was still living at home and knew who we were. By comparison my Aunt has been hanging on for the last 5 years, incontinent, unable to move etc She was diagnosed late but must have had it for at least 12 years. It’s a horrible horrible disease

My grandmother - dementia ran in her family, through the maternal line - I recall her repeating herself constantly when she was about 80 - she didn't die until she was 92 though, and that was from a stroke, at which stage the dementia was very advanced.

Her son was diagnosed in 2019, I think, and had a precipitous descent, high dependency nursing home within a year and dead within four years.

My mother, her daughter, showed signs from 2018 but as in your case, she and my dad put a bit of a 'front' on. When he died two years later, we got her assessed, she has declined badly over the past year following a fall and is now in a NH, very thin and frail but hanging in there. She is 89.

Generally I think female life expectancy exceeds men's when it comes to dementia, about 2-4 years for men and 8-10 for women.

@Toodaloo1567where do you get these stats about the majority of woman dying in their early 90’s men at 87? This is certainly much later than what I’ve generally experienced, with people I know. Over the last year 5 of my friends parents have died, all in their 70’s

That is painful reading. My grandma’s dementia progressed more slowly than average, so I hope her son’s will too. But clearly that might not be the case.

It surprised me too @Cattenberg. I thought perhaps as it seemed to run down the maternal line in our family, it may have been worse in males - conditions that pass from women to male offspring often seem to be.

This chart is useful to see the general stages and average duration of each stage. My mum is 92 and somewhere in Stage 6 depending on the day. It’s 10-12 years since we noticed the first signs and 6 years since she was diagnosed. I read that as a general rule the younger you are when diagnosed / first showing symptoms the faster it progresses. Physically my mum is in really good shape and I don’t want her to reach the very last stages of being unable to feed herself, talk or walk so I am debating when I should start saying no to flu and Covid vaccines. She would be horrified if the person she once was could see herself now.

I really think VAD should be available to those with Alzheimer’s / Dementia.

My DM was diagnosed with Alzheimer’s after the family had been suspecting some memory problems for about a year.She died 4 years after her diagnosis .Cause of death was metastic cancer.

Gosh these are v moving accounts

Physically my mum is in really good shape and I don’t want her to reach the very last stages of being unable to feed herself, talk or walk so I am debating when I should start saying no to flu and Covid vaccines. She would be horrified if the person she once was could see herself now.

The thing is, I read that frequent colds or flu might worsen cognitive decline.

I’m sure that most people would be horrified if they could see in advance how they’d end up after years of dementia. Luckily, they never will, so that’s one thing I don’t worry about.

My Dad has Alzheimer’s disease and is around 10 years in at 86. My wonderful stepmum keeps him busy and takes him out a lot which I think has helped slow decline. Regular theatre trips etc. he can’t concentrate to read now and creates lots of imaginary scenarios of things that simply haven’t happened or he gets fixated on one person and feels very angry with them, it can be somebody he’s not seen for decades. He has just had a UTI but it was caught quickly and is recovering with antibiotics. He is in otherwise “good” health for a man of his age and condition. My grandmother on the other hand, declined very quickly and it was probably a blessing when she caught MRSA and died peacefully. It was so bloody awful seeing this once vibrant, bright and beautiful woman become an entirely different person. I think it’s really very variable and hard to tell from person to person.

We are on this journey with MIL ... diagnosed in 2018 with alzheimers, vascular dementia and frontal lobe shrinkage.

She was ok for a little bit after diagnosis, but in 2019 had carers twice a day at the start and 4 times a day by the end... which were a godsend during covid.

Was fine, with the odd fall and hospital stay until New year's eve. Fell badly and was admitted. No broken bones, but became clear over time she was bedbound, and only falling because the dementia made her forget that fact. She was placed in a community convalescent ward. Finally was agreed she needed a nursing home, where she has been since Feb. She also has copd, heart failure, diverticulitis, diabetes and a raft of other conditions, she is mostly deaf, mostly blind and doubly incontinent. She is 87 and still going strong - in her own world.

The telling thing to me, in your post, is you say you don't want her to die. When you are further into the journey, as we are, you probably will... sorry... it sucks

Oh gosh, don't worry, when I say I don't want her to die, it's true, but equally I don't want her to go on like this. A kind of Shroedinger's cat situation where both states are terrifying. My absolute worst fear is that she lives declining at this pace for another decade.

In four years we've gone from more or less living independently (with my father doing all the finances and the sort of executive function stuff) to unable to move, dress herself and semi incontinent. So if that decline continues in this vein, we could have eight years of an absolute twilight of a life.

Thanks again for all the stories. I hope they've been as helpful to share as they've been for me to read. I'd love to know the ages of the various stages (noticing it, diagnosis, death etc) if anyone is adding their experiences (and they are happy to share these details).

I would say 13 years for my mum in law who died a few years ago, the first sign although we didn't realise was her coming back from holiday and saying she had forgotten how to swim. Kept it kind of together for til 2017 and then declined rapidly.

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/lifeexpectancies/articles/mortalityinenglandandwales/pastandprojectedtrendsinaveragelifespan

I’m slightly out on the females (it was based on my analysis of more recent data) but the key statement is:

• In 2020, the most common age or "modal age" at death was 87.1 years for males and 89.3 years for females in England and Wales.

The point being, modal age is very much higher than everage life expectancy. People think average life expectancy = the age that most people die which is wrong. It’s concerning because, as you can see, there’s a good 5 years difference. People need to factor that in when they make decisions to care for their elderly relatives (as in, your commitment is going to be for much longer than you think)

The NICE guidance on dementia advises that the gold standard is a palliative approach from the point of diagnosis. That doesn't mean expecting a rapid death, it means prioritising quality of life now over discomfort and disruption aiming at future longevity. From the start. I don't think that advice is well implemented at all, but I would aspire to it for myself.

It is hard, OP, I feel for you. Your mum sounds very similar to how mine was. We started noticing confusion in around 2013 and she was diagnosed with ‘mixed dementia’ (both Alzheimer’s and vascular) in 2016, moved into care home in 2018 at which point she was very confused/forgetful and struggling somewhat with speech but still mobile and recognised me. At some point in 2021-2022 her mobility went, most of her speech and I’m pretty sure she didn’t recognise me as her daughter, although she knew I was someone she liked and was pleased to see me. She passed away early 2023 aged 88. Her deterioration was very gradual. By the end I knew it was time to let her go, but just a few months earlier I would have said she had quality of life as I could see she got enjoyment out of certain things eg music.

On the other hand, my dad had vascular dementia, starting in his very late 80s following illness. He deteriorated very quickly, had hallucinations and became bed bound after around 6 months. Diagnosed early 2018 although I would say looking back he probably had it the year before but I didn’t realise as it was very different to my mum. He passed away in 2019.