40th anniversary fund raising letter

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
I received my letter today, and very pleased I was to get it.

I have only been involved with dementia for two and a half years - since my partner was diagnosed. I support AS in many ways, but one thing just occurred to me reading the letter.

I am probably being hugely simplistic, and not at all scientific - but I have a question.

In looking to achieve a cure for dementia - is the aim to cure those who are in the early stages, or is the aim to prevent cases of the disease by screening?

Am I correct in thinking that people like my partner who have significant brain damage cannot be helped - nothing will ever be able to put right the damage?

So in looking for a cure, are the AS in reality thinking that prevention is better than cure?
 

Palerider

Registered User
Aug 9, 2015
4,168
0
56
North West
That is a very complex question, because there are different thoughts on how dementia establishes. There's genetic, known as familial, tends to be early onset, other mechanisms such as in women attributable to postmenopausal hypo-oestrogenaemia (in Alzheimer's) and so on.

In terms of cure, you have to ask is the problem reversable or likely to be, and then you get into other questions of how it can be reversed, which is unlikely when comes to our brains -still very much an unknown in medical science.

Then, if we can't cure it what else can we potentially do? We can try to halt it in its tracks from doing more damage thats one alternative or we can try to prevent it before it does any damage. But given there are so many paths to developing dementia, where and how would you start, would some forms of dementia be more reversable or preventable than others and in whom?

Its a area that needs more people to engage with, so run with it and I wish you well.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,292
0
High Peak
I received my letter today, and very pleased I was to get it.

I have only been involved with dementia for two and a half years - since my partner was diagnosed. I support AS in many ways, but one thing just occurred to me reading the letter.

I am probably being hugely simplistic, and not at all scientific - but I have a question.

In looking to achieve a cure for dementia - is the aim to cure those who are in the early stages, or is the aim to prevent cases of the disease by screening?

Am I correct in thinking that people like my partner who have significant brain damage cannot be helped - nothing will ever be able to put right the damage?

So in looking for a cure, are the AS in reality thinking that prevention is better than cure?

Very interesting question and one I have wondered about too. As Palerider has said, there are many different forms and causes of dementia. I think research into early onset may eventually produce something that halts the decline in the brain or at least slows it down. That's what the currently available drugs do though so far, nothing seems to stop the decline altogether, let alone prevent it. I think there's a long way to go there. Unless we can find 'early indicators' any treatment may come too late. And would that mean everyone had to be screened at an early age?

However... I have my own theories about 'old age' dementia :)

The brain is an organ like any other in the body and as such, it gets old. Old hearts don't work as well as young hearts, ditto kidneys, eyes, ears, circulation, immune system - you name it. Everything gets old and simply doesn't work as well. Some of these things can be fixed, with drugs, operations, stents and the like. But we're not good at fixing brains.

The average 85 year old will have various health issues. My mum (87) is actually really healthy, but she broke her hip last year because she's an old lady and old ladies break easily, due to decreasing oestrogen levels leading to crumbling bones. Her hip was fixed with a metal thing - wonderful! But we can't change the fact that her bones are old and crumbly. She probably has more underlying health issues that are not yet apparent, most of which are simply due to old age, but brain problems are her major concern.

What I am saying is that we don't expect 85 year old bodies to work as well as young ones, so why would we expect brains to be any different? Dementia is - in my opinion - the outward sign of an aging, failing brain. There is a certain inevitability to this - I don't think we should be surprised by dementia any more than other old age health problems.

It's great (I think. Maybe.) that people are living longer and the advances in medical science have enabled this. But it also accounts for the growing numbers of old people with dementia. We can fix eyes, hips, hearts and even cancer sometimes, but we can't halt the aging process. The media bombards us with things to prevent/delay dementia - diet, healthy lifestyle and all that good stuff. Which is fine and may well help us live longer. But... the biggest risk factor for getting dementia is simply being very old.

For this reason, I don't think there is any chance of a 'cure' - ever. There might be a drug that stops plaques forming in the brain (the cause of dementia for some) or something similar, which may be really useful for younger onset cases, but there isn't a drug to make bits of your body young again, and never will be.

A final point. If big pharma were to suddenly announce a new drug to slow the progress of dementia and give sufferers a few more years, would I give it to my mum? It might mean she lived to 95 rather than (maybe) 90. No. I'd rather give her a drug that ended her life now. She can't be fixed so why prolong the agony?
 

Palerider

Registered User
Aug 9, 2015
4,168
0
56
North West
A final point. If big pharma were to suddenly announce a new drug to slow the progress of dementia and give sufferers a few more years, would I give it to my mum? It might mean she lived to 95 rather than (maybe) 90. No. I'd rather give her a drug that ended her life now. She can't be fixed so why prolong the agony?

That raises ethical questions in a number of ways. But I have to say if a big pharmaceutical company did achieve such a medication, it would be so expensive (in the first few years) that the National Institute for Health and Care Excellence (NICE) would probably prevent it's use on the grounds of cost versus benefit.

I think we forget that 99% of medication is not curative, but symptom control, and crude at that. But as in all things, if we don't explore new ideas or potential solutions, we will never know;)
 
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