How long could Dad with dementia last?

[comberbird]

Hello I know this a random post. Today my Dad finally moved into full time nursing care after 7 weeks in hospital. He has advanced dementia - needs to be fed washed incontinent etc - can speak Or really communicate etc. He also been off his feet while in hospital. So walked once in that time and now very frail although capable of walking if encouraged. I know this is an odd thing to ask but how long could he survive like this? The past 12 mths have been terrible for mum who cared for him at home as his health declined but she is already much chirpier since he was in hospital as she’s had some rest and time to herself. I would love my Dad to be around forever if I thought he wasn’t living his worse nightmare but I’m curious to know how others have fared in a similar situation. I suppose I am trying to prepare myself for the end :(

My mum was diagnosed at 52,she lasted 12 years I would say the last 5/6 years as you described,it’s such a hard thing to watch a loved one go through

I think it depends on the type of dementia. My mum had vascular dementia and she sadly went from being pretty much my mum, to us losing her in five months.

That’s the type my mum had

My Dad was much as you describe for around a year before the end. It is very variable.

They don’t really know what dad has - it looks and manifests like fronto temporal as he’s completely lost all his speech and that happened very rapidly. He was diagnosed three years ago although we suspect he was hiding well for a few years before. He’s 78.

It depends on the type of dementia - and whether he has more than one.

Vascular dementia is supposed to be 5 years from first symptoms, and progresses in fits and starts - IIRC the blood vessels in the brain burst bit by bit (the damage can be seen on a scan), and so depending on where in the brain each burst happens, the dementia can suddenly progress overnight if it's happened in a critical area.

Alzheimers etc progress more slowly - more like 10-20 years IIRC (could be wrong on that).

Lewes body dementia is different again. And someone can have 2 or more types at the same time, making predictions difficult. I think age of onset can also affect speed.

My FIL passed away 6 months after going into the care home. He had vascular dementia. Probably had it for around 5 years.

My mum's dementia was pretty well advanced within a couple of years, she didn't know us at all and died four years later. I am so sorry you are going through this. . It as pneumonia that she died of.

Everybody is different, I am sure you read all different stories on here.

Vascular dementia for my mum too.

Thank you all. I know there isn’t a sensible answer but Its so hard to deal with the never ending ups and downs. Although they are mostly downs. Today he has his first shower in weeks so I know he should be feeling more comfortable in his new room tonight.

Mum had vascular dementia.
10 years in total. The last 5 were in a care home. The last 2 she went down hill rapidly.
Dementia is a fucking awful disease for everyone involved.

FIL has frontal lobe dementia and has been without speech, ability to communicate, ability to move for 4.5 years now. He rapidly deteriorated in an eighteen month period before this and went from running a business to this. He has stayed in limbo since. It's horrible, so hard for everyone. We were told he'd have maybe 2-3 years around that time, 4.5 years ago.

I’m really sorry to say this but everybody is so different. I currently work on an elderly medical hospital ward where we see a large amount of dementia patients. My previous job was in a specialist nursing home for advanced dementia.

In some cases, a person can carry on as you describe for several years. In other cases, a seemingly simple chest infection will become pneumonia & take them very quickly.

Have you heard of the “gems” system for staging dementia? It would sound as though your dad is at Pearl stage, which is the final stage. Although, as I say, some will be at this stage for a few months & others for a few years.

My mum has fronto temporal variant - her speech/language was the first to go. She's still at home but pretty much non verbal and incontinent. Healthwise though, shes really good - a very limited diet indeed (she'd be horrified by what she eats now), and she could go on a long time. I did worry at one point that she had an unsafe swallow, but drinking with a straw seems to have helped her co-ordinate.
It is totally rubbish. She was diagnosed 7 years ago, but showed signs from 12 years ago - she's 77 now.

So I think its really hard to know the outlook for your dad. A lot depends on things like getting flu

My Nanny is now starting her third year in a care home after similar circumstances (cared for at home by Husband, admitted to Hospital after Stroke / TIA and Sepsis, released to Nursing Home).

She too was bed bound in Hospital and had to be encouraged to walk again (mainly because in Hospital the Nurses jump on them to get back in bed, and also a lack of understanding of the fact that prior to Admission age was living independently!) but really perked up initially and settled really well / seemed very relaxed etc.

She makes zero sense, but sometimes you get flashes and understand what she means. She rarely knows who we are, but always recognises that we're "her people".

She too is incontinent and it is THE hardest thing as she resists personal care like nothing else, which has resulted in painful thrush / nappy rash kind of thing. We buy her tena "knickers" as these seem to agree with her better than the bulky NHS pads (I guess they feel more familiar?).

We've resisted a catheter thus far as she is still very mobile and suspect we would be constantly in Hospital after she yanks it out (obviously bringing further complications).

Sorry, TL:DR - she's on her third year now and seems to be plodding along without too much deterioration (and in some respects has some improvements as she's better managed) but she is a time bomb of sorts and we know it's likely she'll have quite a quick downturn.

My MIL was diagnosed with dementia 5 months ago. Lost the ability to walk, cognitive function deteriorated, lost about 6 stone, then eventually died in her sleep. All very quick and a bit of a shock.

@CoffeeRunner thank you for sharing the information about the Gem system. Hadn't come across it before and Emerald exactly describes our Dad.

OP to you. It's such a dreadful illness. Take care.

My dad didn't recognise us for the last year just knew we were 'not staff'. The bit that surprised me although actually totally logical is that the staff were the ones he looked to for reassurance that he was ok towards the end. They fed him, made him comfortable, were always there so he totally trusted them. But we were very lucky that it was more or less the same staff for 18 months. But he loved us visiting and talking to him and reading to him and knew we were special.

I know its incredibly hard but you just need to take it day at a time.

For my Dad it moved quite slowly. First minor symptoms like forgetfulness started over 10 years ago and he was diagnosed almost 5 years ago. He went into a nursing home almost 2 years ago and for most of that time he has been mobile, chatty (even though he'd be talking nonsense) and still able to read. He had a bit of a setback with a chest infection over Christmas and is a bit more frail and confused.

From seeing other residents in the home, it really varies. Some are doing reasonably well and then suddenly deteriorate rapidly, with others its more gradual.

It's a horrible disease, don't forget to look after yourself too

I would love my Dad to be around forever if I thought he wasn’t living his worse nightmare My dad was a highly intelligent research scientist. Now with "mild cognitive impairment" in a nursing home full of dementia patients. I would have said this would be his worst nightmare, but he seems relatively content, certainly no less content than his final couple of years living independently.

My thoughts are with everyone on this thread - dementia is the cruelest of diseases but probably worse for those who care and those caring for the affected person. To echo mere, my Mum would have hated her existence towards the end as she was highly intelligent and spent her whole life learning. But it was significantly harder for my Dad who had to watch his wife of 50 years decline so completely and rapidly.

Hugs to all

Thank you all. It’s good to hear about others too. It’s true my Dad seems quite content. He’s rarely irritable and he was a man with a temper when younger albeit one he always had under Very good control. So yes he is quite unaware of the indignity of it all. He also recognises us all still (except my husband which I find very funny - as he knows who our children are which clearly post date meeting their dad). It runs in our family / his mother had it and both his sister and brother have died from the disease already. He always said if it was him we were to hit him on the head with a hammer. Clearly we won’t! But yes I can take some solace in knowing he is very calm and peaceful. Thank you all and I’m glad we have this opportunity to share.

@CoffeeRunner Thank you for the nugget about the Gems stages
I'm going to send a link to our care home manager. Ruby/pearl stage for us but been at that stage there for over a year

@comberbird Not easy but calm and content is a positive in the scheme of things

I'm so sorry OP.

Life expectancy for dementia depends on so many factors- eg women live longer than men anyway.

For alzheimers time between diagnosis (or when symptoms are first noticeable) and death is on average (these are not applicable to everyone but based on average studies) is around 12 years.

Frontal lobe dementia or lewy body is shorter- approx 7 years.

However, if your father is now needing full time nursing care its hard to say. Much depends on his health- if he is bed bound he will be at risk of pneumonia and if he has dementia he'll be risk of dysphagia (difficulty swallowing which can lead to aspiration of fluids etc).

Pneumonia and dysphagia are the most common "causes" of death in dementia. In my experience of working in NHS, people decline very quickly once they are no longer able to eat or drink. I would say then, its usually a matter of months (could be longer, could be less). From how you describe your dad, I would be v surprised if he was still here this time next year.

I'm very, very sorry OP.

My auntie had vascular dementia and lived for five or six years after diagnosis. But she was 95 when she died, so realistically, she'd have died of something anyway at that age.

Sorry your dad is ill