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.

Grandparent diagnosed at 87, recently died of something unrelated at 94. Certainly did see a decline and she became more and more non verbal in her last six months or so but always knew who we were etc.

I agree. I find that 'live healthily' advice gives people false hope. My NDN smokes about 80 fags a day, is overweight and lives on bacon sandwiches and Doritos, as far as I can see, all cited as risk factors for dementia, and she's late 80s and sharp as a tack. My ex FIL cycled into his late 70s and was rake-slim, teetotal and ate oily fish and salad etc (MIL was cracked on healthy eating and he's now an absolute wreck with vascular dementia.

Having said that, stats show that the proportion of people over a certain age diagnosed with dementia has gone down in each generation, which they think is due to reduced smoking and increased treatment of cardiovascular risk factors. The numbers are still climbing because we're now into the big baby boom reaching advanced age, and because more people live longer, but it does mean it is still worth doing those commonsense things.

I wonder if living healthily might sometimes delay the onset or slow the decline?

But what is the alternative to POA? Without the power, it would be the equivalent of abandoning the elderly person as there is no one to handle their life admin and finances and make medical decisions for them. I am surprised your dh even thought of walking away from his own mum, because that is what it would amount to. A bit of admin never killed anyone. Sorry this makes me cross.

The stuff does not appear from nowhere, it was always there just needs someone to handle it.

That is why many of us at middle age are called the sandwich generation. Looking the elderly and our own dcs.

The stuff does appear from nowhere I'm afraid.

She's gone into a home, from hospital after a fall. The finance forms from the council are complex. He had zero knowledge of his mum's financial stuff other than she had an account at her local branch (that isnt there any more). Had to track things down... she has 3 tiny accounts plus national savings, plus an alms house pension tied to her 150 year old house that has always been in her husband's family... so not under land registry, but has to be to have a charge put on it, for deferred payments, or to sell it. (And she'll lose the pension as she is not resident, which changes the finance info, more forms requiring half a dozen original documents etc some of which they have already seen)

There are always exceptions to statistics, but the fact remains that the statistics reflect the vast majority of people. It's the nature of the normal distribution curve.

I understand now. That is quite a lot to deal with and would make the strongest quake.

When I first took over my parents' finances, I flew over to their house (they live in a different country) and camped there for a week going through their files and paperwork to piece it together. Nowadays not having paper statements and only emails or electronic accounts makes things much more difficult to locate. With your dh's mum in hospital and possibly without mental capacity (not sure whether it is a POA or LPA), it is harder without his mum to de-code it for him.

I now have 3-4 lever arches worth of my parents' paperwork in my home, which is growing everyday. My father has since passed away and my mother in a residential home. It is a lot to manage.

Hope your dh manages to get on top of it and then going forward it is managing the ongoing admin. At least with POA he has status to write to all these bodies for information which I know is frustrating enough in itself.

My mother was diagnosed with vascular dementia coming up to 13 years ago. She really did well with only a very slow decline for the first decade, memory problems but could mask well and was still very engaged and interested in things going on. Then she had multiple falls and a long stay in hospital and declined a lot! She has been bedbound now for 2 years. Reliant on 2 carers 4 times a day and really cannot do anything for herself. She has no quality of life left, memory is awful. Cannot watch telly as irritates her, cannot hold a conversation, gentle radio is all she can handle. Sleeps a lot! I really hope it doesn’t carry on for years, she would hate this if she were aware. It’s a very cruel disease.

Tine scale for us has been:-

2019 diagnosed with Parkinsons dementia after at least 2 yrs of cognitive decline. Hidden by sticking to strict routine.

2020 lived alone with a lot of support, able to go to village shop cook, clean & garden. During Covid lost all social interaction and declined rapidly.

April 2021 moved into residential care, still recognising children, grandchildren on & off. Walking aided, eating and drinking independently. Toileting themselves to degree.

December 2022 moved to full nursing home.

Currently wheelchair bound, doubly incontinent, very limited movement, very little speech. Not recognising any family, not speaking, fed a liquid diet.

Young onset dementia Initially muddling dates and spending on internet orders and beauty products Strange decisions. Conversation odd and disjointed all attributed to stress from work. Slurred speech and loss of words. Paranoia and psychosis spies etc. Very behavioural. Resistant to seeing doctor. Let go from work contract. MRI -- frontal lobe gone. Distress and confusion. Crying. All the time. Never still. Walk. Walk. Walk. Aggression. Agitation. All this has taken just 18months from well paid employment to non verbal and requiring 24 hour care from dh and carers. We have on third re-application got chc as co-morbidity of mnd. Not sure if this is the right place to put this. But I have been following the elderly parents' board for a while as it seems so relevant sadly to dd. Although I am the elderly one and she is only 40 with her two small children. Her dh is wonderful but I have lots of empathy with all of you managing, I don't agree with all his decisions, but he wants her at home.

She was diagnosed in September with a twelve month prognosis.

All my best wishes to anyone coping with dementia.

I’m so sorry 💐. It must be extremely difficult to care for someone with FTD-MND. I read about another mum in her 40s (in Sheffield) who has the same combination, so there will be other families who understand what you’re going through.

DM first showed signs in 2018, although it wasn’t obvious until my StepDad died in 2019, I think he was covering for her for a while. Finally agreed to investigation and diagnosis of Alzheimer’s 2 years later. She managed fine living alone, with me fighting fires in the background, she still went for walks and did jigsaw puzzles and could have a long involved conversation usually accusing me of stealing. Then she had a massive decline overnight and couldn’t be left alone. Went from care home to nursing home. She’s now only able to walk with help, conversation is mostly repetitive phrases or gobbledygook, sleeps all the time, weighs nothing and eats and drinks little. Had a massive screaming and crying phrase and that still goes on now. Is depressed and almost constantly anxious. Remembers me and one other family member. I think she’s stage 6 but doctors optimistically say she’s moderate stage. She was rushed to hospital last month and operated on to save her life. Truth be told I had no idea I could have said “please don’t operate, she has no quality of life,” not until I had a chat with her surgeon post operative and they saw just how confused she was after the operation and thought they might have caused the dementia to get worse, I had to say “no, this is her normal state, absolutely 0 short term memory.” Back at the nursing home antibiotics are given out like sweeties for every UTI or chest infection. I can well imagine DM lasting another 10 years now.

Best wishes to you and your family too @seeinginthedark. As much as I struggle with my mum’s decline and this slow disappearance of the essence of her, I know she had a long and happy life before this started and that losing your parents is the usual order of life. To see your child decline with dementia and be cheated out of 30-40 years of their life must be incredibly tough.

I find that surprising as my parents friends are dying every other month it seems. All late 80's. Mid -90's seems a big leap. Do you have the info? My Grandma lived to 100 but all her friends were long dead. She said she had lived too long.

@seeinginthedark I'm so sorry, it's an incredibly cruel illness in the elderly but for your daughter it's unimaginable.

@SinisterBumFacedCat how old is your mother?

I'm still amazed by how long so many people live with dementia, to such advanced ages, and in such an awful state. There really doesn't seem to be a lower age of mortality amongst them than in the general population. In fact almost the opposite - it's like you either get a physical thing or the brain deterioration. My mother will also likely live longer because she's so well looked after and her lack of mobility means she'll never have a fall.

She's fortunate that the sale of the house means she can pay for this care. But gosh it's depressing and I dread it happening to me. I'm going to do an advanced care directive about having no flu jabs or antibiotics if I'm diagnosed.

Thank you for kind thoughts. It is the cruellest of diseases at any age, but very hard on a young family, incomprehensible and isolating for children to navigate. Hand hold to all.

I'm sorry, it's a very difficult time I know.

My late mum started getting repetitive and confused from time to time, in about 2018. She was diagnosed with Alzheimer's later that year after a brain scan, and although she did a few barmy things occasionally she managed pretty well at first.

I started to handle more and more of her appointments and life admin, and visited regularly to make sure she was eating. I did notice that she had 14 packs of butter in the fridge...

In August 2019 she had a fall indoors that she couldn't remember, but a neighbour found her and called me saying she had hurt her back and couldn't move well. Things started to decline from there...she had many more falls at home and I started sending carers in twice a day.

She found her way out of the retirement apartment complex one night and fell down on the front lawn, in the dark and the pouring rain, unseen. Luckily an ambulance crew, called for somebody else at the same complex, found her. The manager (of the apartments) then told me she was no longer safe there, so I needed to find a residential care home for her near me. I sent carers in 4 times a day at that stage.

I arranged "respite care" (we all knew it was permanent, I told mum it was a convalescence home), and two nights before she was due to go in she wandered again, disappearing for 90 minutes wearing only a nightie before she thought to press her emergency wrist alarm. Me and paramedics were searching all over the development for her.

She settled reasonably well in the care home on new years eve 2019, but still toppled over regularly. She had only been in the care home for 4 months when she suddenly collapsed and became unresponsive - in hospital they found a raging UTI, multiple blood clots on the lungs, and her type 2 diabetes uncontrolled. She was discharged back to the nursing home after 2 weeks - it was covid times so I only saw her briefly and she couldn't speak. She didn't recover and passed away 4 weeks after falling ill, in May 2020. Her death certificate says "Urosepsis".

So 2019 was a hard year for her and for us, but in the context of other people's experiences, her suffering was mercifully brief.

Hi @Sittingontheporch
You said. "My mother will also likely live longer because she's so well looked after and her lack of mobility means she'll never have a fall."

You are absolutely right.

My mother died earlier this year - finally - ten years after diagnosis. She was 79 when diagnosed. She coped at home alone for a year and then had carers at home for 2 years. She was still mobile and fit at that point but she wandered off and got lost, and set fire to the grill etc, so for her own safety she moved to a care home (the care home was brilliant).

She moved there in 2018 and in the years pre pandemic she was still fully mobile and continent, and could have a jumbled type of conversation, she enjoyed music and would get up and dance. I barely saw her for 18 months during the pandemic, and by the time I did she had deteriorated significantly. She was barely mobile, doubly incontinent, and only able to feed herself soft food with a spoon. Within a year (so 2023) she had to be fed and was completely immobile and moved by hoist. She stayed like that, deteriorating very gradually, until her death in 2025.

She wasn't living in those last two years, she was just not dying.

She finally died of a cold. She was so frail that she went from slightly unwell to dead of pneumonia within 24 hours.

We were told it was usually 5 years for Vascular Dementia and that is roughly how long she lasted. It was Covid-19 tgat got her in the end. She just never really recovered and was eating and drinking minuscule amounts.

My fil (79) has dementia, and went into a home on Saturday.
It was time, i think. It was too much for my mil.

Looking back now, this probably started about 5-6 years ago, and we realise (now) that he had been masking for a while.

Bless him, my mil, and my lovely sil. It’s been really tough on her.

Deleted response to previous post

97yo DM was diagnosed at 92 with mixed dementia following a stroke/covid and tbh apart from a recent pneumonia (probably related to issues with swallowing) is physically well and has a good appetite. She doesn't know my name when I visit but recognises my face and weirdly will ask after my DC. Her dementia seems to deteriorate if she gets an infection. She's losing her will to live a bit now as all her friends and DF have gone.
DF also had dementia for several years (masked by DM) we think before he got an official diagnosis, and he lived 5 years after that but sadly died of covid pneumonia.

Mum diagnosed at 68 stayed at home with carers till she was 87 which almost finished my sister and I off and then in a wonderful home.

Mum was 91 last week.