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?
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?