Thank you so much everybody for sharing your experiences and Nitram, as ever for providing evidence. But's Witzend's comment above that strikes me -- I don't want Ma to be in a pitiful state, get aspiration pneumonia because she can no longer swallow. Her Dad died at 89 and until two weeks before his death, was in relatively good health. Then, all of a sudden, everything stopped working and he slipped away with his children around him. I'd kinda like that for her.
Life expectancy of someone with dementia
- Thread starter Boldredrosie
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Thank you so much everybody for sharing your experiences and Nitram, as ever for providing evidence. But's Witzend's comment above that strikes me -- I don't want Ma to be in a pitiful state, get aspiration pneumonia because she can no longer swallow. Her Dad died at 89 and until two weeks before his death, was in relatively good health. Then, all of a sudden, everything stopped working and he slipped away with his children around him. I'd kinda like that for her.
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until two weeks before his death, was in relatively good health. Then, all of a sudden, everything stopped working and he slipped away with his children around him. I'd kinda like that for her
is what so many of us want for our LO, but so often it is denied them.
I don't know about the 'late moderate/early late stage' being the longest. In my experience those in the very last severe stage, when death might be expected at any time, is often the longest. For those who reach it that is.
I look back and shudder to think how many years before diagnosis William was showing signs of dementia! There were odd incidents going back many years, and changes in behaviour and moods. I knew he had dementia for around 3 years before his GP tentatively diagnosed him in 2008, saying he was "pretty sure" - but William was still scoring perfectly on tests in 2011 when we managed to get him an emergency appointment with a Consultant because of a psychotic breakdown (caused by the dementia). He continued to score very highly for about another 1 1/2 years, as his dementia very obviously progressed. Then there was a sudden and dramatic drop.
His consultant told me once that although every patient is very different because so many other aspects of their health & lifestyle will influence things, in very general terms, for someone William's age (77 when diagnosed by GP in 2008), expected life span would probably be in or around ten years from diagnosis. But he did qualify that to say that we had to bear in mind that we couldn't be sure how long William had had the illness, as his very high intellectual & educational level had masked it for so long - and also that it really depended on how well the person remained. Some became more prone to infections than others, which took a severe toll on their health. William had always been prone to respiratory infections and was asthmatic - and eventually succumbed to aspiration pneumonia at the age of 84, seven years after initial diagnosis.
His consultant told me once that although every patient is very different because so many other aspects of their health & lifestyle will influence things, in very general terms, for someone William's age (77 when diagnosed by GP in 2008), expected life span would probably be in or around ten years from diagnosis. But he did qualify that to say that we had to bear in mind that we couldn't be sure how long William had had the illness, as his very high intellectual & educational level had masked it for so long - and also that it really depended on how well the person remained. Some became more prone to infections than others, which took a severe toll on their health. William had always been prone to respiratory infections and was asthmatic - and eventually succumbed to aspiration pneumonia at the age of 84, seven years after initial diagnosis.
My Ma has been ill since I was born and I'm 53 but it's odd -- now her dementia is pretty advanced (but not severe) all those other conditions seem to have faded into nothing -- even the stuff that can kill you like atrial fibrilation, vasculitis, and high blood pressure. I think both she and my dad are statistical outliers when it comes to life expectancy. And now with the care her care home give her, she'll outlive me! I just hope she doesn't outlive her financial capacity to pay for this great care.
I feel my experiences with my mums dementia differs in terms of speed of decline. She was diagnosed at 57, though probably showed symptoms for two years prior, and she died 5 years post diagnosis despite being otherwise well. she went into a care home in January and then her body just seemed to shut down and she died 4.5 months later even though she had no infections or anything like pneumonia.
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" I think both she and my dad are statistical outliers when it comes to life expectancy."
Interesting as my mother had a heart attack in her mid forties and that's where I believe her Vascular Dementia started. Yet here she is nearly 89. I often say she should be in the Guiness Book of Records for her to to live post heart attack and 'overcome' each new phase, AF heart failure, Brachycardia, TIAs and now tonic-clonic seizures.
I can tell you right now, if i get this stinking disease, my life expectancy will be very short. Hateful, stinking disease. No way am i hanging on.
91 years old father with Alzheimer's but is in good health.
My father is 91 and I just got back from the doctors office and physically, he's in very good shape. He does not take any medications and is walking on his own-full head of hair, but does tend to shuffle when walking and has the "mask" of the expressionless look. He was diagnosed with Alzheimer's 2 years ago and is living in an Independent Living apartment. I manage everything for him and I see him everyday. He needs notes written so he knows what the plan is for the next day and his memory is limited. He knows he had dinner at 4:30 but cannot remember what he ate.
I notice that there is not a lot of information on men with Alzheimers over 90. If there's anyone out there that has a similar situation- I have some questions. I don't know how to plan for the future with a healthy man who has Alzheimer's. I know the average life expectancy is about three to four years after diagnosis but my Dad is doing so much better then most men his age. My fear is that he'll end up bed-ridden with a healthy body for years.
My father is 91 and I just got back from the doctors office and physically, he's in very good shape. He does not take any medications and is walking on his own-full head of hair, but does tend to shuffle when walking and has the "mask" of the expressionless look. He was diagnosed with Alzheimer's 2 years ago and is living in an Independent Living apartment. I manage everything for him and I see him everyday. He needs notes written so he knows what the plan is for the next day and his memory is limited. He knows he had dinner at 4:30 but cannot remember what he ate.
I notice that there is not a lot of information on men with Alzheimers over 90. If there's anyone out there that has a similar situation- I have some questions. I don't know how to plan for the future with a healthy man who has Alzheimer's. I know the average life expectancy is about three to four years after diagnosis but my Dad is doing so much better then most men his age. My fear is that he'll end up bed-ridden with a healthy body for years.
Hi maryvivi, welcome to TP
I believe that when it comes to AZ age is just a number more so than at any other stage in life.
Last week my wife and I had some birthday cake given to us by a woman who's birthday it was that day, we had a chat and she then went. I then feed the cake to my wife as she can no longer feed herself nor walk very well and she's 64.
This 91 year old lady is far more capable than my wife was at 60 and looking at them both I honestly believe she could outlive my wife.
There's another lady there who if you'd asked me a year ago I would have expected no longer to be there, but she is while several much fitter/able people than her are no longer with us.
Depending on where you live a man living to over 90 has exceeded his life expectancy so how can you add 3 or 4 years to that, If he'd been diagnosed at 60 would it still be the same 3 or 4 years you add?
My wife was diagnosed at 55 (9 years ago) and other than AZ has no health issues, she has exceeded the length of life since diagnosis of plus 3-4 years but is pretty certainly not going to make the life expectancy of a woman without AZ.
Age and sex are just labels when it comes to AZ, we're all different.
K
I believe that when it comes to AZ age is just a number more so than at any other stage in life.
Last week my wife and I had some birthday cake given to us by a woman who's birthday it was that day, we had a chat and she then went. I then feed the cake to my wife as she can no longer feed herself nor walk very well and she's 64.
This 91 year old lady is far more capable than my wife was at 60 and looking at them both I honestly believe she could outlive my wife.
There's another lady there who if you'd asked me a year ago I would have expected no longer to be there, but she is while several much fitter/able people than her are no longer with us.
Depending on where you live a man living to over 90 has exceeded his life expectancy so how can you add 3 or 4 years to that, If he'd been diagnosed at 60 would it still be the same 3 or 4 years you add?
My wife was diagnosed at 55 (9 years ago) and other than AZ has no health issues, she has exceeded the length of life since diagnosis of plus 3-4 years but is pretty certainly not going to make the life expectancy of a woman without AZ.
Age and sex are just labels when it comes to AZ, we're all different.
K
Kevinl is right there are no guidelines for dementia.
years ago i read that dementia is supposed to shorten your life by apprx 50%. So expected life 82 for a woman. Diagnosis at 72, so instead of 10 years 5 years so expectancy would work out at 77.
However year on year we have more people being diagnosed and seemigly having much longer life expectancies than expected.
In the 7 years since diagnosis for my mother Drs have revised time after diagnosis up to 8-12 years compared to the previous 4-7 years back in 2010. Although looking back she had symptoms many years previously, she wasn't 'diagnosed' till 2010, mainly because having seen all my female relatives suffer I wasn't willing to accept it with my own mother. So she was actually 82 when she was diagnosed and will be 90 next year. If anything she is healthier since she's been in the NH?
She has long-term heart disease in the mix yet she has already 'outlived the 'average' with the dementia.
As we see more people reaching advanced age and therefore more sufferers I'm sure Drs will revise opinions and say dementia doesn't shorten one's life but just gives one a lousy quality of life for years for many.
My mother has been in stage 7 for over 3 and a half years now. Not living -just existing.
years ago i read that dementia is supposed to shorten your life by apprx 50%. So expected life 82 for a woman. Diagnosis at 72, so instead of 10 years 5 years so expectancy would work out at 77.
However year on year we have more people being diagnosed and seemigly having much longer life expectancies than expected.
In the 7 years since diagnosis for my mother Drs have revised time after diagnosis up to 8-12 years compared to the previous 4-7 years back in 2010. Although looking back she had symptoms many years previously, she wasn't 'diagnosed' till 2010, mainly because having seen all my female relatives suffer I wasn't willing to accept it with my own mother. So she was actually 82 when she was diagnosed and will be 90 next year. If anything she is healthier since she's been in the NH?
She has long-term heart disease in the mix yet she has already 'outlived the 'average' with the dementia.As we see more people reaching advanced age and therefore more sufferers I'm sure Drs will revise opinions and say dementia doesn't shorten one's life but just gives one a lousy quality of life for years for many.
My mother has been in stage 7 for over 3 and a half years now. Not living -just existing.
Same here. My mum was diagnosed in 2006 aged 66 but she showed signs for a year or two before. Shes now 76 going on 77 and still here. Chair / bed bound, says only a few recognisable words etc but enjoys her soft diet and smiles and laughs readily. She never picks up a cold, never has an infection, probably due to the excellent care she receives in the care home (shes been in care 5.5 years).
There are days when I wish it were over, I must admit.
There are days when I wish it were over, I must admit.
I empathize with wishing it all over, but I encourage you to treasure those infrequent smiles and laughs. It's been coming up 3 years now sine I've seen a smile or a laugh and she doesn't even return a hand squeeze any more or respond when I stroke her face/ kiss her- just total impassivity.
My mother is also very well cared for in the NH and never catches a cold or any infections now and talking to the Dr recently he says that barring the dementia my mother's health is incredible for a 89 year old with heart disease and were it not for the dementia she would be able to lead a completely independent life on no medications.
The cruelty of this disease.
What I find quite strange is that we all know from our past experiences that actual date of diagnosis is problematic in the first place. We all say that there is a gap sometimes of years between certain observations by family members and getting the person to go through the process of diagnosis which in itself can take ages.
I don't know if any of you have done any of the life expectancy calculators that can be found on the Internet. There is one quite long one that goes through lifestyle, medical, family histories etc but there are no questions at all about dementia or other mental health conditions. The closest it gets is a bland question about stress. How accurate can such a calculator be if it omits such a large area of human health. The questions about heart health are few and certainly don't reflect my OH 's history.
So personally I feel that I can't really believe what it is telling me and feel a bit let down by its inadequacy.
I don't know if any of you have done any of the life expectancy calculators that can be found on the Internet. There is one quite long one that goes through lifestyle, medical, family histories etc but there are no questions at all about dementia or other mental health conditions. The closest it gets is a bland question about stress. How accurate can such a calculator be if it omits such a large area of human health. The questions about heart health are few and certainly don't reflect my OH 's history.
So personally I feel that I can't really believe what it is telling me and feel a bit let down by its inadequacy.
I don't know where I read it but I know I read that on average people live 5-7 years after diagnosis for vascular dementia. Mum lived 5 years after she was diagnosed and then seemed to decide to give up and stopped eating and drinking.
People with younger onset dementia do seem to deteriorate quicker than other types.
It's impossible to say though. If you look at probabilities and disease predictors then I won't reach retirement age myself (no-one will give me life insurance because of my obesity); I might prove them right or I could go on to 88 like my pipe-smoking granddad who was 25 stone+ for most of his life. Life expectancy depends on so many things including lifestyle, genes, social support (married men live longer for example) and whether you were born or brought up in an area of social deprivation or not.
People with younger onset dementia do seem to deteriorate quicker than other types.
It's impossible to say though. If you look at probabilities and disease predictors then I won't reach retirement age myself (no-one will give me life insurance because of my obesity); I might prove them right or I could go on to 88 like my pipe-smoking granddad who was 25 stone+ for most of his life. Life expectancy depends on so many things including lifestyle, genes, social support (married men live longer for example) and whether you were born or brought up in an area of social deprivation or not.
Since my mum aged 90 was diagnosed formally in 2012 she has declined and is now doubly incontient, no longer talks or recognises anyone,needs to be fed and sleeps most of the time. She could stay in this limbo with no quality of life for many years yet. She has a terminal illness but no-one can give an accurate prognosis.
I honestly think it would be kinder and more dignified to let her slip away peacefully in her sleep with assistance.
I honestly think it would be kinder and more dignified to let her slip away peacefully in her sleep with assistance.
