How long could Dad with dementia last?

My FIL lasted 15 years - died last year aged 98.

My DM had vascular dementia. She lived at home with DDad for about 4 years. By that time she could not really move at all and had lost her speech and went into full time care for about another 4 years.

She was extremely well cared for and was actually very happy and content in herself towards the end. In fact I was a bit concerned that she would never die and would outlive my DDad, but she died peacefully in her sleep 3 years ago.

My grandma had dementia and she had to move into a care home specialising in dementia care and she lived 20 years after being diagnosed.

You can’t tell OP. My aunt was diagnosed aged 82.She lived to 98.

I'm sorry OP, it's horrible when you're looking ahead to a bleak future. And difficult when you have no idea how long it will take to progress. I understand wanting some sort of guidance, I too looked up timelines etc. to try and get some answers/reassurance.

My father was diagnosed with fronto-temporal dementia about 2 years ago, he's 80 this year. The doctor said it had probably been coming on for 5 to 10 years. He's still in the early - mid stages, can't communicate well, forgets things, but he's still at home with my mum. She has to help him shower and make sure he eats, and he can't be left on his own for too long.

I worry about her taking care of him, I worry about when/ how he will decline, I worry about what kind of quality of life he will have.

I suppose as long as he's not in pain and not distressed it should be ok, but it's soul destroying watching someone you love deteriorate like this. And I dread what is to come. Mostly I just miss the person he used to be .

Care home residents can last a long time with good care. Some dementia forms result in death quicker than others.
I would say, as a family, you need to seriously think about what forms of inventions you want for your father. Obviously not all requests will be carried out if medically advised against. But do you want every possible illness treated, or how much treatment are you prepared for him to receive. Or would you rather he was just kept comfortable and passed sooner rather than later. Such decisions will impact on quality and quantity of life left to live.
It’s a hard time for you all.

I don’t have any answers for you, but I just wanted to say I’m sorry this is happening to you and your family and please do take time to take care of yourself, too

Your father sounds very similar to my dad when he moved into a nursing home. He had vascular dementia which he probably had for about a year before I realised this as his symptoms were so different to my mum's. My father lived another 6 months in the home, so probably around 2 years overall with the dementia. It was so sad because at the end he couldn't move , couldn't communicate and was in his own little world. Very sad, but that doesn't mean it will be like that for your dad as it is different for everyone and my father was 10 years older.

Mum has Alzeimers which she's had for maybe 6 years now, very gradual decline. Dad was mum's carer in a way doing all the household stuff when she started to forget what needed doing, but he went downhill so quickly when he became ill himself.

It runs in our family / his mother had it and both his sister and brother have died from the disease already.

That's similar to my Dad. His mother had it and now he and his sister have it as well. The other two living siblings aren't showing any symptoms of it at this stage.

There is research out there indicating that the disease is inherited through the maternal line, so if your father has it you should have no greater risk than the general population. Obviously for selfish reasons I hope that's true, but who knows.

My dad was in a similar state when he went into a care home. Our family gp discussed with us whether we wanted him to be treated if he became poorly or to let nature take its course. We opted for the latter and he died of pneumonia 2 months later. He was 92 and it was a kindness to let him go. I would want the same for myself.

My mum has Alzheimer's dementia and was diagnosed 3 years ago, aged 79. She was living independently up until last August, when she had a fall - at Christmas, after more falls and wandering incidents (one where she was found laying on the ground in the car park in the pouring rain) I had to move her into full time residential care.

As recently as August 2019 she was still cycling to the shops, even though she'd often forget her bike on the way back. Now she can barely stand up unaided or shuffle, and is unable to learn to use a walker. She is not incontinent but often can't make it in time. She can swallow but her appetite is fading. We still "chat" but it's mostly nonsensical, I just step into her world and go along with her theme. Very very occasionally, there is a window of "old" mum. She recognises me and DH as her people but I don't think she knows exactly who we are.

I can't bear to think of her existing like this for another 10 years. She is generally calm but the other day we spoke on the phone and she cried and said she'd had enough. I can't bear it.

My dad developed dementia at 95. He had Previously been very active and had a razor sharp mind. The decline was very rapid. He died just before his 97th birthday.

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

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.

@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

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

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.

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

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.

@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 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.

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 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