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.

Sorry you’re going through this. My dad was diagnosed 10 years before he died, but his memory didn’t change at all in that time. People who knew him were amazed to learn he had dementia as he showed very few signs (if any). He died at 85

my mum went from being diagnosed with dementia in 2021 and died two years to the day of dementia and went to the very last stages of it so couldn't eat couldn't walk couldn't talk doubly incontinent at this stage I was relieved she didn't go on and on as she had no quality of life she was just short of her 81st birthday.
Every case is different though

My mum was diagnosed late 2020. Still living at home but gets very confused by everyday stuff like adjusting heating and money but still shops and cooks for herself. Basically she's fine with stuff that's very routine and doesn't change but the slightest change, like a change in design of a bank card, totally floors her.

It seemed like a long time for FIL - MIL complained about him asked for help - he did the tests etc but they didn't want a diagnosis. That was about 4 years in total. Then there as a potential scamming and report by social services that MIL was acting strangely when they visited FIL. We finally got a diagnosis for FIL as mixed dementia. We then moved them to assisted living near us about a year and 6 months ago.

MIL couldn't cope she was referred to the memory clinic and her behaviour became more erratic. She went into respite from FIL for 2 weeks and never came home. She became aggressive and tried to kill her carer by pushing them into the road. They got an emergency DOLS on her, got a diagnosis of vascular dementia - pushed through her diagnosis as she'd already had the scans we were waiting for the results and we said she's not going back to FIL. She went straight into a dementia care home which she's been in for about a year now. We were all focusing on FIL that we didn't notice she was worse than him. She masked it so well at home but when moved it all fell apart. FIL is coping and living semi-independently in assisted living, and visits MIL every day. She is aggressive and confrontational on occasion in the nursing home. But they changed her meds and seems to sleep quite a lot now.

For my mum, who was in her early 60's when it was first noticeable that there was an issue, it was 14 years. At diagnosis she had a lot of word finding problems, didn't know my name, only knew her own first name, and had problems with eating and drinking. She'd then have sharp downturns in her ability at intervals and by the time she died she didn't recognise anyone and didn't speak really. She died 5 years ago - just shut down and stopped eating/drinking, she had covid, but actually it was a very gentle death for her in the end

My grandma was ten years from when we very first started noticing symptoms to when she died. She was ok at home on her own with visits from us for years (although stopping her driving was a challenge). She needed carers after about 7 years. In the last year, she massively declined and had to go into hospital with a UTI and never went back home as she went into a nursing home from that. She was able to feed herself and use the toilet with support. She could still talk and recognise very close family members. She died quite suddenly of a heart attack.

My mum was diagnosed early onset 2017 and died of sepsis 2022. She had a chest infection which didn’t respond to antibiotics and we said no more treatment

Around 7 years from diagnosis to dying, for my DM. Steady decline , into care home after 2 years. Once in the care home, she went through a difficult aggressive / distressed stage for a year or so. Then became more settled , but much less mobile, stopped recognizing family and friends. Similar to others, she got to the point when she couldn’t feed herself, could barely talk, was bed-bound. It’s so hard to watch someone deteriorate like that. Eventually she died peacefully after a minor seizure-like episode. Sending love to OP and any others who experience a parent having dementia 💐

My FIL was still walking when he went into the care home and died within a year.

However we had been very clear we didn't want him being admitted to hospital as the whole family agreed he wouldn't want his life prolonged in this condition. He likely had a UTI which caused kidney failure and he died very quickly after it started.

He is much missed but everyone felt it was a blessing for him that the end was quick.

Mum diagnosed 2020 died 2023.
Thank goodness it was a short time.
Going from a vibrant lady to an old woman.
Yes that is a insulting title but she didn't know who she was, didn't know her children or grandchildren.
Couldn't talk, walk, eat or drink properly.
A very cruel disease.

Mil died of something unrelated to her dementia. She'd had her diagnosis for maybe 4 years. Something went wrong with her liver, I can't remember, and her body just packed up. Maybe if she hadn't had dementia she'd have been able to tell us sooner that she wasn't feeling well, I don't know. Or maybe the symptoms would have been more obvious.

Her first signs were getting mixed up and forgetting words. Then forgetting people's names but mostly still recognising them. Her world just sort of got smaller and smaller. She stayed in her chair, she spoke less and less, but she still liked having people around her.

Then she moved on to randomly crying. I found that quite hard actually. She looked really distressed when she was crying but couldn't ever say why. Nothing comforted her. Then the crying would just suddenly stop and she would be fine. She wouldn't remember she had been crying or upset. I would want to know if she was sad about something I could help with but she could never say.

She had physical problems with her back and hips so she couldn't get out of a chair. So we never had problems with her wandering off or leaving the gas on. So I guess that was a good thing in a way.

So our experience was gradual and quite calm mostly, nothing dramatic. Just sad.

I hope your journey is as smooth as can be.

This is an impossible question but one I asked. On a dementia forum you read versions of your question along with "what do they die of"

So... its hugely variable. My personal thoughts are that dementia patients often have strong physical health so death is slow.

10 yrs approx.
Parent stopped eating. Dementia made her ignore hunger signals. So she starved to death. Carers spoon fed fortified drinks in. I found it very very hard

Four years from diagnosis to death. It the end it was pneumonia that was the cause of death. It’s the most horrendous thing to watch and I was glad for my dad that he died when he did. He would never have wanted to live like that. He had quite a fast decline compared to many and didn’t speak for the last 2 years. I miss him every day.

MIL was diagnosed with vascular dementia in March 2019. She was at home with carers coming in for a long time, then started hallucinating and had to be moved to a care home about this time last year. She died at Christmas. We don’t quite know what took her in the end, the death certificate just says old age. Her quality of life was very poor for the last two or three years, I couldn’t be sad to see her go.

My MIL was diagnosed with Alzheimer’s in her late 70s, was at home looked after by FIL for a couple of years, then had a very testing few years in a care home, then a nursing home, then a secure nursing home. She died at 86, but by then she recognised no one, couldn’t speak or communicate and had a terrible quality of life.

My DDad showed the first signs of dementia at about 80. He hid it for a while. He probably went into a care home too soon but Mum wasn’t coping and he wasn’t safe at home. He died at 90, after a fall. He still had some speech and occasionally recognised a family member but rarely. He kept his personality though which was a blessing.

My Mum went downhill fast after DDad’s death. Diagnosed with an unusual dementia at 81 and died at 83. It moved very fast and was scary for her and us.

I can't remember exactly when dad started showing signs -perhaps 8-10 years ago? He is now mid-90s and his short term memory is basically non-exitent (long term remains better). He could not function without round the clock care - would not get up, drink or eat, do basic hygiene etc without constant prompting.

He recognises my mom, my daughter and me, mostly, though sometimes confuses us.

He is mostly happy. He sleeps a lot and enjoys watching TV, sport especially (he seems to have fads - his current fixation is horse racing, which he did enjoy before dementia too, though not to the same almost obsessive extent) , sometimes takes an interest in news items and still expresses opinions on these at times, especially local news I have noticed; he likes a glass of wine in the evenings......

My mom's standpoint has always been that it's best to treasure what you still have, rather than lament what you have lost. He is still very affectionate and loving towards us; he still has a sense of humour off sorts and opinions on things; he and mom still enjoy an occasional sex life from what she has confided; that type of thing. He broadly seems happy and to still enjoy his life mostly, so that is lovely to see.

Nontheless it's brutally hard work for my mom (who has chosen not to outsource any of his care) and of course not what any of us would have chosen.....

It's called the long goodbye for a reason.

Sincere commiserations OP. Just try to take each day as it comes, and treasure what you have. And be kind to yourself. It isn't easy.

My dad was diagnosed with Alzheimer’s in summer 2023, speech issues and cognitive impairment rather than memory initially. Now completely unable to read, write or use technology when previously able to do all of this very well. Struggles to understand well anything. It’s horrible. Thank goodness I already have POA including a living will. Cruel disease

Thank you so much for sharing. Like I say I'm not really sure why I'm asking, but I find these responses to be interesting and in a strange way reassuring. Not sure why they should be - something about feeling the universality of such a grim experience. Not that I'm glad others are going through it, but it's sort of normalising.

So many things resonate. Like the crying, DM sheds these very easy silent tears, like her tear ducts are plumbed into the part of her brain that feels emotion, especially of the sentimental sort. And the physical health - apart from not being able to move and now being very overweight, she takes no pills and has nothing wrong with her. Which is why I worry that it's going to be a very long drawn out and painful decline.

As well as the universality, there's also the differences. Like the very quick decline to death in contrast to the decades.

GMIL was around 15 years from first symptoms to end of life. By that point she’d been on liquid nutrition for 18 months, hadnt moved for longer, and it had been about five years since she’d visibly seen to be enjoying anything. 10 years in a home, she was mid 90s when she died but her body was strong as an ox.

MIL was diagnosed last year, after 1-2 years of symptoms. Vascular dementia and Alzheimer’s. In the end she only had six years without this horrible life in her life after her mum died.

Elder Grandma - 13, maybe 15 years. She moved into a care home eight years before she died. Her speech and mobility declined substantially, but neither vanished completely and she still had an (increasingly odd) sense of humour.

Younger Grandma - I’m not sure, but maybe 8 years, possibly 10. Around the time of her Alzheimer’s diagnosis, she became very paranoid, but luckily this phase passed once she moved into residential care. She died at a slightly earlier stage than my other grandma.

They had almost identical deaths. They both contracted UTIs, ended up in bed, sleeping deeply and then passed away peacefully within a few days.

@Sittingontheporch , I’m so sorry dementia is an absolute bitch. My mum was an extremely intelligent woman and my elder son who is a doctor tells us that this masked her dementia for a while. Then she fell off a cliff, I don’t want to frighten you but it was horrific. She suffered deeply and viciously over perhaps eighteen months probably less I didn’t record the timeline during which time her suffering was nightmarish. In the end the devil that is dementia stole her appetite and she became more and more frail. She had suffered all her life with asthma and ended up in hospital again and again with increasingly severe chest infections and pneumonia. At the end she was skeletal but there was still a decent amount of my mother left. I stayed in the hospital ‘sleeping’ by her bed for several nights while she suffered the horrors of dying and I had to advocate for her to find someone to administer another dose of morphine. My heart breaks for the others whose screams went unheard. I have wept writing this, with all my heart I wish we had brought her home to die.
Sending you strength.

Two quite different experiences (in grandparents) for me: one (with vascular dementia) started forgetting things - getting lost in the car, the odd word, things we'd told her - and within 6 months had lost a lot of words (at which point she got a diagnosis), a year after that was extremely paranoid and agitated to the point of violence, doubly incontinent. A year after that she was non-verbal and died about 2 years after diagnosis, of a stroke. That was brutal.

My other grandma started being a bit forgetful with words, retelling stories, forgetting where she'd lost things around the time I was 16 - she was diagnosed with Alzheimer's (her mum had it, so they were pretty quick with getting her to a memory clinic). She died when I was 28, so 12 years later - and I would say it was only in the last couple of years it was really 'bad'. Before that she just got increasingly more forgetful and distracted seeming, but still aware of who we were and where she was etc. The last couple of years she gradually became much less verbal and a bit more withdrawn but even then it wasn't til very late on that she seemed not with it at all/unable to do things for herself. I'm not 100% sure on what was her official cause of death - she passed away very peacefully at home, though. She was much more what your mum sounds like - she didn't seem especially distressed either, which was a small blessing.

You've got my sympathies - it's an absolutely horrible thing to go through, for them and you.

3 years ish for my lovely amazing grandad 💔

25 years so far, Mum’s 90.
Three bouts of pneumonia this winter and 9 lots of antibiotics.

I have had enough and so has our poor Mum.

It’s no life for her.

Sympathies, it’s incredibly hard to witness.