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.

Just picking up on what you said earlier, OP, about the saddest stories being those who lived for longer, this was opposite for us. My dad’s experience was awful, awful for him. Mum continued for a long time in what I would say was a benign state, where she seemed happy to sit and watch what was going on. We had carers at home initially but when dad needed two carers for moving him, they both moved into a care home, which I think was good for my mum with things going on around her and safe spaces where she could wander around, so better for her mobility than sitting watching TV all day as she had been doing at home.

That’s interesting thanks for that. Very different to my own personal experience but must be correct if that’s what the statistics say.

So sorry for what you are going through, OP: it is the uncertainty which is the cruellest thing I think. You said you were interested in ages/timelines. Timeline for my Dad: 2011 (aged 81) - still totally in control of all aspects of life, but forgetting rules of games like Scrabble, which before he had been a whizz at and invented his own rules (!); also filters coming off behaviour (eg coming downstairs to breakfast at a distant relative's house half dressed, when normally he was dapper at all times even at home); His mother had had dementia for many years so I suppose I was on the lookout early on. In 2013 (age 82) - minor accidents while driving, not involving other vehicles; assessment of risk while driving much reduced; emotional outbursts if in unfamiliar situations (eg at my wedding, weeping and shouting out "Oh!") compared to his pre-dementia state, which was highly controlled and undemonstrative; more language filters switched off; his speech seemed not to be able to keep up with his brain, so often a long sentence would end in a mumble (he had been highly articulate); forgetting the way back from local shops; but on the other hand, completely his old self in other ways; 2017 - visual hallucinations on waking from sleep and daytime naps. Would wake up and make tea for three people: himself, Mum, and his brother, who had died the year before. In 2018, decision to move nearer to me taken between him and my Mum; completely unable to deal with sale of their house, simply disengaged with the process, mistrust/paranoia about us, his advisers, Mum, started; anything he didn't understand he simply walked away from; After the house move, his world shrank; in a nutshell, his world had stopped in 2018. Anything after that he couldn't really process. 2020: Lockdown had a vicious effect and his decline speeded up but getting a diagnosis was impossible. Hallucinations both waking and sleeping; convinced that people were in the house and would point to them while we were with him. More language filters off (effing and jeffing in public). Obsessed with money, couldn't understand why he had as much as he did (proceeds of sale of house, but he was convinced it was fraud); lost ability to frame complex sentences; often bad-tempered and/or hallucinating in the mid to late afternoon. By 2022, my Mum was exhausted and we moved them to assisted living; Dad threatening divorce and ringing family members to tell them about it. Accused my lovely husband of scamming him. Episodes of uncontrollable weeping. But other days amenable and content, polite to everyone. He collapsed in October 2022, was taken into hospital and from there to a care home, then back to hospital where he died aged 92. He had made it very clear in his first week in hospital that he did not want to live on in a care home and that he should have died earlier. It sounds horrible but I had been hoping for ten years that the dementia would not catch up with him - and he almost outran it. Cause of death was urinary sepsis; I think he just really, really wanted to stop living. Sorry for long post; I hope this helps in some way. Sending sympathy and good wishes.

My dad used to repeat things but I put it down to “forgetfulness”. Then a couple of times he told me he had got disoriented while out, not knowing where he was. This was in 2015. By early 2016 things like this were happening more and more. He began to see things that weren’t there. He kept getting lost and then started losing things. He then started mixing up his medication and getting confused about days of the week. Some days he was completely normal others he was off kilter. This all happened over 18m - 2 years. I then decided to stop work to support him. By now he was at the point where he was having more issues. He started phoning people but forgot he had just spoken to them. One day my cousin said he had called 16 times in a morning. One night he called the police to say he locked in a strange building - he was at home. He was referred to the dementia clinic. It took a while - it was by now 3 years. He was diagnosed with mixed dementia possibly with Lewy bodies (he would see people and animals etc that weren’t there).
We are now at the end of 2017. I would be with him from 8-6 every day. On my way home in the evening he would often phone me to ask when would I go to see him as it had been so long. Sometimes he thought I was his sister, sometimes his mum. He attacked me one morning as he thought I had come to steal from him. It was awful. He put a Tupperware container into the gas oven and forgot it until the kitchen filled with smoke - luckily no fire just melted plastic. He became incontinent. At the start of 2018 he moved to a care home. I was by now almost on my knees - my days with him were like psychological thrillers with some of the things that would happen especially the seeing people that weren’t there. I was drained. His dementia would stay at one level then he would have a very sudden decline. Then the same again. I visited the care home every day for several hours. Some days he was my dad other days he was disinterested in me thinking I was someone who worked there. He died at the start of 2020 so in 5 years he went from a bit of forgetfulness to being completely wheelchair bound weighing less than 8 stone unable to walk or recognise me (though bizarrely some days he could!)That was our timeline.

That sounds so brutal @Thoseshoeslookcomfy. It really is like a complete personality transplant in some people, akin to some sort of possession. My mum's friend, who was the most prim and proper woman, a Sunday school teacher and lifelong churchgoer, started shouting and swearing her head off at carers when she was in the final stages. If my mother went like that, I don't know what I would do, it would be the stuff of nightmares.

My mum has now been diagnosed with middle stage alzheimers and I think she's been there for about 2/3 years. She started showing dementia signs approx 8 years ago though so I think she's progressing pretty slowly. My MIL however had a variety of physical ailments that appeared at the same time as the dementia, and although the dementia was never diagnosed, within 2 years she was hallucinating. She then had another 18 months of being seriously unwell and then fell and broke 2 ribs. She then went on pain killers and then 2 weeks after that, fell and broke her hip. She died about 3 weeks after that in hospital.

My grandma - probably about 10 years. She also had heart disease and v poor vision. She got to the stage of lacking any mobility and then went into a care home. She was only in there about 3 months, but actually it was her heart that gave way.

Hugs op. It sounds like she’s actually quite far advanced if she needs a lot of care. Whilst nobody can give you an exact prognosis, not even her drs, from personal experience i would suggest around 3 years until you would be at a dnr stage, what actually happens at the end is variable but flu, pneumonia, Covid etc often is the co morbidity on the death certificate. (Due to my job it’s an occupational hazard being involved with dementia).

I know how horrible it is as I’ve listed family members to this cruel disease(s) as well as dealing with it through work. Make sure you look after yourself and your dad op. Thinking of you

Practically speaking withholding all active treatment of urine or chest infections would be kinder and prevent an unnatural prolongation of the dementia decline. Impossible to avoid coercion when a person has reduced capacity to make decision. My family specify gentle, comfort care only from diagnosis - why extend a poor quality life that is ending naturally. Avoids undue suffering.

Sorry to say, my poor DM had Alz. for around 15 years all told. First signs in her very early 80s, went on to 97. Last 8 years in a care home - she was in a most pitiful state for the last few, doubly incontinent, etc.

She survived a broken hip at about 91 - general health was very robust. After about 90 we said no hospital or ‘striving to keep alive’ and there wasn’t, but she went on anyway. TBH a swifter end would have been much more merciful.
IIRC the death certificate said sepsis and dementia.

OTOH I know of someone who had the galloping variety - barely 3 years, start to finish. She was the ‘lucky’ one.

For MIL, the signs started about 10 years ago with general memory issues, i.e. asking the same questions again and again within a few minutes, inability to hold a conversation as she'd forget what you'd just said to her. It was roughly 2015 when we noticed as we'd taken her on holiday with us (as we did twice a year for several years beforehand), but this time, she kept asking where she was, whether she'd been there before, how long we were there for, what we were doing today, etc - time and time again - just couldn't remember she'd already asked and couldn't remember our replies.

She persisted living independently for a few more years simply due to "Muscle memory", ie going to the bank every month to pay her bills, paying her papers every week, handing in her prescription at the chemists and remembering to pick up a few days later, so it was pretty much well hidden by simply keeping to routine. It all fell apart when taking her on holidays as she couldn't pack for herself anymore, and struggled living somewhere different for a week or two. She couldn't remember where she lived, asking if this was her new home, whether we'd bought it, etc. She was fine out and about, going to attractions, eating out, etc., but really struggled in the hotel or holiday home.

2020 and Covid was the real killer as she lost all ability to do anything for herself when she couldn't get the bus to town, couldn't go shopping on her own, couldn't come to us for her Sunday evening meal, etc - she couldn't understand we were locked down etc. She never got over it and could never do anything for herself again afterwards once the "habit" was broken, but she still did ok with a lot of support from us and her other daughter - she could cope in her home, i.e. cooking, cleaning, laundry, gardening, etc.

Mid 2024 and there was rapid deterioration. She started forgetting to do things she'd been able to do, i.e. forgetting she had garden tools in the shed, forgetting to do the laundry, forgetting how to cook things and started to use eat microwave ready mails, even forgetting what the TV was and how to turn it on or change channel! By Autumn 2024, she didn't understand heating the house and would sit in the cold because she forgot she had central heating and a gas fire - not forgot how to turn them on, she forgot what they were! Then she forgot how to use the microwave or even boil a kettle. OH and her daughter were having to go 2 or 3 times a day each to make her drinks and meals, turn on the heating, etc.

At the start of December 2024, she deteriorated further and couldn't even turn the lights on - OH and his sister would go and not only would she be sat in the cold, she'd be sat in the dark too, just waiting for one of them to turn up - she didn't know what to do. They started looking into getting 24-7 care or care homes, but she went downhill really fast that they couldn't get it set up in time. She couldn't even make cereal for breakfast - OH turned up one morning and she'd put orange juice over her corn flakes instead of milk! She couldn't even eat or drink what they made for her - she'd spit out water or toast pointing to her throat and making a grimace face - she couldn't speak to articulate what was wrong - she'd completely lost her words. She died at the start of January as her body had basically shut down with little or no food nor drink. They'd taken her to the GPs but they were completely useless and offered nothing at all. Ended up blue lighted to A&E where she languished on a trolley in a corridor for 48 hours!

Not a pleasant end. She was very distressed for the last few days - completely dilirious and hadn't a clue where she was, who she was or who the family were.

I work in a dementia unit and honestly mo 2 people are the same. It's heartbreaking I know. Being physically fit and well improves well-being but honestly anything could happen.

My mum's aunt lived until the age of 102 with dementia (it only seemed to hit her in her early 90s) but she also had a mass in her breast diagnosed about then too, so it's amazing she lasted so long. Some old people have powerful constitutions - so many old folk die following falls in very old age, yet you do hear of some people having fractures and making a recovery like pp's mother above.

My FIL started with low level forgetfulness about 15 years ago. First big sign was that he forgot to tell dh and BIL when their grandma died, then wondered why they weren’t at the funeral.

he masked it really well, he was a very intelligent man (he got his PhD in his second language!) and also a creature of habit, so it took a while for anyone to see it (his partner didn’t notice as she was with him every day but we live in a different country so saw him maybe 4 times a year).

7 years ago it became obvious that he couldn’t stay home any more, he was wandering in the night and forgetting to get dressed. We were very lucky to get him into a good care home, and his faculties just slowly declined, though he was still eating, especially anything sweet! (The medication he was on was disguised in his pudding).

About this time last year he had a fall and he went to hospital, and at this point the care home were unable to take him back as he’d lost most of his mobility. He was moved to a nursing home. On Boxing Day just past he was taken to hospital with a UTI and the doctors - along with his partner and dh, who is a GP - decided not to treat it. He was made comfortable and died a week later without regaining consciousness. He was skin and bone, curled up in the foetal position, and couldn’t talk or recognise anyone.
DH said he’d heard once that you can be “sad, but not sorry” that someone had died. I think that’s how we all felt. He was 79.

I’m sure someone else has said this, but have you power of attorney..

@ShinyAppleDreamingOfTheSea - your mother sounds like she's had a near identical trajectory as my mother, at the same age, but six years earlier. My mother's mobility has gone at an earlier stage than yours did but otherwise the same. I instinctively feel she'll live until at least 90 though as I just don't see what will take her away. It's so weird that we're told continually how important it is to exercise and to stay fit and yet there are so many stories of elderly, very dementia-ridden people living for years and years totally immobile.

Oh yes @Lyracappul we got POA about five or six years ago. My father did it all - I think in retrospect he knew that something was up back then and was making sure it was sorted. My mother has been unable to do anything for herself for at least three years. I remember the most painful conversations with the bank where she'd have to try to identify herself by outlining most recent transactions etc. She could never remember passcode for either her phone or the ATM, despite both being the day and month of her birthday.

That is a very good phrase 'sad but not sorry'. I think I'll feel that way, as I did when my father died (weighing absolutely nothing and calcified into the most awful contortion).

PS again thank you to all for sharing

@Sittingontheporch
We are also told of the importance of social interaction and brain activities plus various dietary things in terms of fending off dementia. My parents did crosswords every day, went weekly to a tea dance where they learned new steps each week, other social activities such as local history and walking, ate healthily but they both still got dementia. I was quite resentful for a while. Over it now, it’s just one of those things.

My dad was diagnosed with Alzheimer’s in 2018, although he had had symptoms for at least 2 years, but the GP refused to refer him for a long time. He went into a nursing home in 2020 and died in 2021 at the age of 88. The cause of death is listed as Alzheimer’s / old age.

I’ve heard that if you are diagnosed younger you live longer though. My ex husband’s nan lived for about 10 years post diagnosis.

Certain things may make a difference though - my exh’s nan was cared for by her husband for the first 5 years. My dad declined very quickly in the 2020 lockdown and even more so after he moved into the home and there were restrictions on visits.

Haven’t RTFT but definitely get POA - it’s only possible to do it when they still have some capacity if memory serves me right. My mum got POA as soon as dad got his diagnosis.

My dad was diagnosed with Vascular Dementia & Alzheimer's in 2015 and he died in 2024, he declined quite gently for about half of that time and then more rapidly and alarmingly. He was very agitated and restless for the second half and eventually had psychotic episodes. He was never violent but he became suspicious and paranoid and didn't know the difference between night and day or who we were or where he was. He died at home, with support from carers & the hospice at home nursing team, for the final 6-8 weeks. He was 91.
My mum also has Dementia, caused by brain damage, caused by epilepsy & a head injury. Her decline has remained slow and steady, since 2018, without the chaos of my dad's illness. She had a heart attack in December last year and was unconscious for some time so her cognitive function is quite a bit worse but she has recovered physically. She is 90. She lives independently, with quite a lot of support from me, although I don't live with her.

POA can be a double edged sword sometimes.

Yes it definitely makes it easy to deal with stuff. BUT it also makes a whole great big pile of stuff appear from nowhere... relentlessly with no let up.

DH had 12 letters last week concerning his mum... (redirected from her home address) medical, care, house, bills, bank... all needing his input as her representative - he had to be talked down from walking away.

Sorry to hear about your parent. It's an awful disease.

My parent was diagnosed at 75 and eventually died at 87.

9 years from signs of cognitive stuff, 7 years from diagnosis til death of an infection of some kind in her 90s. Still knew us but needed lots of domestic support.

I clocked my dad's dementia about 15 years ago. Mum told me it was stress (he was her carer). She died a couple of years later and he dissolved himself in alcohol for a couple of years.

He was diagnosed 12 years ago 2012 but quickly wasn't able to live alone. It wasn't just taking him shopping, his insistence that he could put it away himself and having to go back 20 mins later to remove the lettuce from the freezer and the ice cream from the pantry or his inability to tell TV from reality, high levels of confabulation, inability to manage cutlery...

He moved into residential care but was free to come and go. He had an account at the shop. He went for walks. Then he started getting lost. Then he started thinking he was clever and lying to staff about where he was going so they couldn't find him if he was late back...

Eventually they put a deprivation of liberty order in place. He was still quite erudite and hid missing words behind verbose and archaic sentences.
He couldn't name anyone in the family by that point but knew we were connected.

Then COVID. We barely saw him for months on end. After that he had no idea who we were. We were just the nice people in the village.

He carried on like this for a further 3 years. Then he lost most of his words. Last summer he started retaining water and whilst still independent in personal care, he needed pads.

In October he had pneumonia. 2w later a pulmonary embolism and shockingly poor hospital care.

He died in November. But that was 11 years post diagnosis. He was in good form, physically until the last 6m. He was 87.
I'm relieved for him that his body finally gave up. Life wasn't much fun for him for the last 5 years. It's a long time to exist.

Dementia is so cruel. I really feel for anyone else on that pathway.

However, Wendy Mitchell's experience was very different. She was active on twitter (less frequent but still lucid) until a week or so before she died. She also published 2 books post diagnosis. She was an amazing lady!