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lies, damned lies and statistics?

lollyc

Registered User
Sep 9, 2020
69
We have been on the road to hell for around 4 years, although I have only recently found TP.

Something that strikes me from reading the posts, is that many people, whilst clearly suffering from a dementia, do not have a “formal” diagnosis.
My question, therefore ,is where does the figure of 850,000 people living with dementia come from?
If based on those with a diagnosis, then it is clearly a woeful underestimation of the reality. Factor in those with Mild Cognitive Impairment, many of whom are reliant on family to manage some aspects of their life, and we are surely looking at just the tip of the iceberg. Or am I catastrophising? What does this mean for future funding and research, if we aren't even sure how many families are dealing with this devastating disease?
My mother had a non-specific diagnosis 3 years ago. This may have morphed into a recognised type by now, but, as we have no follow ups, we will never know. How does anyone know how prevalent a particular type is, if there is no accurate diagnosing?
I have recently looked into donating Mum's brain for research (something she would be willing to do), but “the brain banks are now no longer looking for more people to sign up through the Brains for Dementia Research scheme.” Do you know how many people have signed up to donate since 2007? 3,278. And this is not actual brains donated, only those who are willing to donate.(Figures from Brains for Dementia website.) In many cases, difficulties postmortem will mean that the brain is never used. So, that is the best case total number of brains that will be used for research. I make that about 0.39 % of the people with dementia today. (I think my maths is right, but stand to be corrected on that one!)
If, and it's a big if, you are suffering from a “common” dementia this might go some small way to find a treatment or cure. But, if you don't, I wouldn't be optimistic that your particular dementia even makes it to the microscope slide.
If we can't even decide on an accurate figure, we are a long way from getting appropriate funding for the social / health care dementia sufferers need, and a long, long way from finding meaningful drug therapies to help everyone who finds themselves on this road.
Pessimistic, or realistic?
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
Hi @lollyc

The true figure of dementia sufferers is not known, but in such large numbers the next best approach is approximation so you would have to look at a wider picture as being a true account of the cases of dementia at this current point in time based on statistics. It is estimated that one person every three seconds is diagnosed with dementia at the current rate, so work that out over the next ten years. I believe if we started from now the calculation would be something like this (provided the rate of incidence didn't change). How many seconds in a day = 1440 so every day 480 people are statistically diagnosed with dementia. How many in one year (say one year is accepted as 365days) =175,200 new dementia cases. 10 years approximates to 1,752,000.
 

Whisperer

Registered User
Mar 27, 2017
231
Dear @lollyc

Whenever you get into the field of statistics you can rapidly get into the areas of extrapolation and magnitude. In many medical fields we are into the area of best estimate (did some ungenerous soul say guess at the back of the room). Again a figure may seem depressing in isolation, then become positive in comparison. Recently I did an internet learning course on Dementia with the University of Tasmania. Basic course but I came away with an interesting point. Firstly the number of estimated Dementia cases in the world is increasing year on year. Deep sigh so depressing. That said overall the world population is ageing and Dementia is mainly an age related illness. So the number of cases as a percentage of the increasing number of aged people on the planet is falling slightly, even as the number of cases is rising. Hence my point about context.

Having just watched the PM and two highly paid government employees give a slide show on Covid19, a few points spring to mind again about context. Do nothing and we could get 4000 people a day dying. Guess them being on prime time TV gives the game away that we are going to do something. The next worse case was 2000 dead per day, a grim number but already 50% down on the do nothing option.

in the end statistics can be made to say many things. I would stress two key points. firstly for our loved one with Dementia all of this is irrelevant. No matter what the numbers say they have Dementia. Secondly, for people over say 70yo the cards are mostly already played as regards the risks factors of Dementia. Regular exercise, stop smoking, keep weight healthy, etc, all a bit late to start at that point. By the way I do not doubt that can all help, but many people with Dementia were previously fit, non smokers, drank moderately, held down demanding jobs, etc, but still got the illness. Medical professionals may not like to admit it ,but as well as a genetic element I think like most other illnesses a certain degree of good fortune plays a part. Am I the only one a little tired of Dementia sufferers to a degree being described by default as people who did not live healthy lives. Poor Adult Social Care provision and convenient for society to blame the condition in large measure on the sufferers.

The only statistic we can all agree on is that in the long run we are all dead. A statistical certainty but not a lot of use to man nor beast. I will close in thanking you for reading my post, wishing you well for the future and remember stay lucky, an element statistics can never put a value on.
 

AbbyGee

Registered User
Nov 26, 2018
108
Portsmouth, South Coast
Dementia in all its flavours is amongst us. It's the most common form of elder - and not so elder - long term health needs and is amongst the leading cause of death in the UK.
However - as our age expectations increase and our population ages we must expect these things to be more prevalent - but that doesn't mean it needs to be pushed under the carpet.
It's a fine balance and one I don't want to walk the tightrope of.
WHERE is the care? WHAT can be done? WHEN can earlier diagnosis (and perhaps better care) be given? WHY is Dementia so accepted as 'just one of those things'? HOW can society be made aware of the signs and signals and be more gentle accepting of those still living with this dreadful disease? And WHO can easily ask for support, either for themselves or others?
I really don't know the answers yet am so aware of the questions. I feel powerless, cold, useless and dead inside. It's killing me.
 

Lone Wolf

Registered User
Sep 20, 2020
56
Dementia in all its flavours is amongst us. It's the most common form of elder - and not so elder - long term health needs and is amongst the leading cause of death in the UK.
However - as our age expectations increase and our population ages we must expect these things to be more prevalent - but that doesn't mean it needs to be pushed under the carpet.
It's a fine balance and one I don't want to walk the tightrope of.
WHERE is the care? WHAT can be done? WHEN can earlier diagnosis (and perhaps better care) be given? WHY is Dementia so accepted as 'just one of those things'? HOW can society be made aware of the signs and signals and be more gentle accepting of those still living with this dreadful disease? And WHO can easily ask for support, either for themselves or others?
I really don't know the answers yet am so aware of the questions. I feel powerless, cold, useless and dead inside. It's killing me.
Me too AbbyGee.😞
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
That said overall the world population is ageing and Dementia is mainly an age related illness. So the number of cases as a percentage of the increasing number of aged people on the planet is falling slightly, even as the number of cases is rising. Hence my point about context.
Just to say and I am sorry but dementia is not age related. its not part of the normal aging process
 

canary

Registered User
Feb 25, 2014
13,893
South coast
its not part of the normal aging process
That is true, but it is also true to say that the older you are, the more likely you are to get it.

And that, I think, is the problem. Old people are not respected in our culture. There was a recent documentary on the Shipman murders and one of the questions asked was - how did he get away with murdering so many people over so many years? - and the answer suggested was that it was because he targeted old people. Has anyone else read the online comments on news about covid? Even bearing in mind that this is only a small percentage of the population and some of it is undoubtedly trolls and bots, it is depressing to see how often the opinion is stated thats its old people who die of covid, so they dont matter.

Dementia is seen as an old persons problem. The general population is unaware of what the disease is like - the media shows the "rosy glow" version of "living well with dementia" and often fails to show the reality, Cancer affects people of all ages, including children, so it commands a lot more attention. People who have heart attacks or need organ transplants are younger people and people considered to be in their prime. But old people are too often considered "past it". Dementia is not "sexy", it does not garner much funding for research or support, it is what an American friend of mine refers to as a "no casserole condition"
 

AliceA

Registered User
May 27, 2016
2,864
I agree, health and age alone are not accounting for rise.
My husband walked a good distance each day, ate a healthy diet, had a good philosophy and a keen curiosity that kept us both learning and enjoying lectures and social contact.

We were fortunate that an acute illness led to a bran scan and diagnosis.
This brought in some things that helped but some things that hindered.
It would, overall, have been more difficult without a formal diagnosis.
My own skills assisted us both to help to deal dementia with as a 'challenge' as an unwanted guest. Something we would deal with together.

Again we were fortunate as we downsized making the growing care more manageable.
I feel for people who are dealing with the rough end of dementia with out any formal recognition.
It is like a cancer, until fully recognised it hides in the shadow, not attracting the funding people need to cope and accept. The stigma of dementia will remain.
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
That is true, but it is also true to say that the older you are, the more likely you are to get it.

And that, I think, is the problem. Old people are not respected in our culture. There was a recent documentary on the Shipman murders and one of the questions asked was - how did he get away with murdering so many people over so many years? - and the answer suggested was that it was because he targeted old people. Has anyone else read the online comments on news about covid? Even bearing in mind that this is only a small percentage of the population and some of it is undoubtedly trolls and bots, it is depressing to see how often the opinion is stated thats its old people who die of covid, so they dont matter.

Dementia is seen as an old persons problem. The general population is unaware of what the disease is like - the media shows the "rosy glow" version of "living well with dementia" and often fails to show the reality, Cancer affects people of all ages, including children, so it commands a lot more attention. People who have heart attacks or need organ transplants are younger people and people considered to be in their prime. But old people are too often considered "past it". Dementia is not "sexy", it does not garner much funding for research or support, it is what an American friend of mine refers to as a "no casserole condition"
I think it is very depressing to see the views of others written across pages of various media with no idea of the damage it does and how demisery such comments can be. But as always, there is a human tendency to think that they are not in that category -how wrong they are!
 

Whisperer

Registered User
Mar 27, 2017
231
I think it is very depressing to see the views of others written across pages of various media with no idea of the damage it does and how demisery such comments can be. But as always, there is a human tendency to think that they are not in that category -how wrong they are!
Dear @Palerider

that is very true. Some of the young are adamant this is an older persons illness, nothing to do with them. Now let me see the actual Earth is about five billion years old. The most distance galaxies if memory serves around 13 billion years old. And the average life expectancy? Dear youngsters I can assure you very rapidly you will age and all the issues of being old will be yours to behold. most probably not Covid19, but you can embrace say Covid23 by then.

But also we need a sense of balance. One day there might be a real breakthrough in Dementia treatment. The young child bouncing on granny’s knee might be the discoverer. Most young people I have met and worked with in my life have been lovely people. Worried about football, pub closing times, she or he is a bit of alright, fashion, etc. Being honest I think we can all relate to some items on that list and definitely add to it. We travel through life and at some vague point stop being young and end up old, with a few stops in between. Then there is physically old and mentally old, in terms of behaving like a grown up, whatever that also vague concept means.

One day ET will drop in for tea and hopefully overnight everyone will buy the thought that in really we are all human. Not young or old, attractive or plain, different colours, different sexes, different religions, etc, just all boring human but with the potential collectively for so much more.

Please forgive the ramblings of a tired mind. Mum now stirring meaning I must vacate my soap box. Get the pills and tea ready, wonder who I might be today as I enter her bedroom. Early signs of shielding mania, isolation sickness, or grumpy old ***. best wishes to all.
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
Dear @Palerider

that is very true. Some of the young are adamant this is an older persons illness, nothing to do with them. Now let me see the actual Earth is about five billion years old. The most distance galaxies if memory serves around 13 billion years old. And the average life expectancy? Dear youngsters I can assure you very rapidly you will age and all the issues of being old will be yours to behold. most probably not Covid19, but you can embrace say Covid23 by then.

But also we need a sense of balance. One day there might be a real breakthrough in Dementia treatment. The young child bouncing on granny’s knee might be the discoverer. Most young people I have met and worked with in my life have been lovely people. Worried about football, pub closing times, she or he is a bit of alright, fashion, etc. Being honest I think we can all relate to some items on that list and definitely add to it. We travel through life and at some vague point stop being young and end up old, with a few stops in between. Then there is physically old and mentally old, in terms of behaving like a grown up, whatever that also vague concept means.

One day ET will drop in for tea and hopefully overnight everyone will buy the thought that in really we are all human. Not young or old, attractive or plain, different colours, different sexes, different religions, etc, just all boring human but with the potential collectively for so much more.

Please forgive the ramblings of a tired mind. Mum now stirring meaning I must vacate my soap box. Get the pills and tea ready, wonder who I might be today as I enter her bedroom. Early signs of shielding mania, isolation sickness, or grumpy old ***. best wishes to all.
Love it ;)
 

lollyc

Registered User
Sep 9, 2020
69
I understand that any figures can only be a best approximation.
The harsh reality of dementia is so far removed from the "living well" image that we all know well. Until, or unless, Joe Public, on the other side of the dementia wall, sees how truly ugly it is, and that they are quite likely to end up on this road (whether carer or cared for) dementia will never get the recognition, funding and support we all strive for.

For the man in the street the maths is simple: 850,000 people in a population of 66,000,000? So my chance of getting it is what, 1 in 70? The advert says it's 1 in 3 to get cancer. And anyone can get cancer, but only old people get dementia. And anyway, it's just a bit of memory loss.... I'll donate my money to Cancer Research thanks.

Perhaps a more realistic representation of figures, broken down into age brackets, and a "1 in ..." risk, would be more effective? And a "warts and all" representation of dementia in the media. How about impact statements from carers being used in publicity? The young may feel it's not their problem, but what about when free babysitter Grandma / Grandpa is the one who needs babysitting? When the hoped for inheritance disappears in care home fees? (mercenary I know)

It's not enough to say we're all living longer and this is only to be expected. Because this abdicates any responsibilty to do more. Because this implies that we as carers should just shut up and get on with on it , because that's the hand life dealt us. And stop making a mountain out of a mole hill!

Nothing can help my mother now, but I truly fear that when (God forbid) I find myself on this road, maybe in 30years, still nothing will have changed. I'm just hoping voluntary euthanasia is available by then.
 

Spamar

Registered User
Oct 5, 2013
7,508
Suffolk
The youngest person diagnosed with dementia was 6, I believe. Better to advise your children not to play football!
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,006
High Peak
Hi @lollyc

The true figure of dementia sufferers is not known, but in such large numbers the next best approach is approximation so you would have to look at a wider picture as being a true account of the cases of dementia at this current point in time based on statistics. It is estimated that one person every three seconds is diagnosed with dementia at the current rate, so work that out over the next ten years. I believe if we started from now the calculation would be something like this (provided the rate of incidence didn't change). How many seconds in a day = 1440 so every day 480 people are statistically diagnosed with dementia. How many in one year (say one year is accepted as 365days) =175,200 new dementia cases. 10 years approximates to 1,752,000.
... except that there are 86,400 seconds in a day, not 1440.... so in one year - 10,512,000. Can that be right???
 

Palerider

Registered User
Aug 9, 2015
2,115
North West
... except that there are 86,400 seconds in a day, not 1440.... so in one year - 10,512,000. Can that be right???
Hmm I confess I had too much fizzy wine last night. Your right on the seconds, but I believe it is one person every 3 minutes is diagnosed -so 24x 60 =1440 , 480 per day, so ten years 1,752,000
 

jennifer1967

Registered User
Mar 15, 2020
1,220
Southampton
there was a baby of 6 wks that died of covid. there is also a childrens disease related to covid called kawasaki which inflames the blood vessels. year old child was playing and 2 hrs later he had died but not much publicity
 

Aquamoon

Registered User
May 4, 2017
8
I've been reading on here about people below the age of 65 suffering from Dementia. There seems to be more and more in their 50s so it is no longer only an old age disease but a middle aged disease as well.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,006
High Peak
I've been reading on here about people below the age of 65 suffering from Dementia. There seems to be more and more in their 50s so it is no longer only an old age disease but a middle aged disease as well.
But is the incidence of dementia in younger people increasing or is it just being diagnosed more?

Statistics need to be in context to have meaning.

E.g. '70% of dogs now eat more veg than meat.'
Is that because their owners think they should?
Is it because their tastes have changed and dogs now adore carrots?
Is 70% higher or lower than it was 10/20/50 years ago?