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What ideas or research are needed?

WJG

Registered User
Sep 13, 2020
74
0
It occurs to me that a lot of research is done unto the 'dementia community', and there seem to be a lot of people deciding that XYZ is a great idea to help people living with neurodegenerative diseases.

This thought has been spurred on by me starting to fill out a questionnaire online and then realising that I couldn't fit my position and condition into the yes/no boxes provided. Do I have a diagnosis? Well, sort of....

But what research do those of us with dementia - and our carers - think would really help? What are the issues we want to know more about, and what are the problems (no matter how mundane) that we want solved?

I have a sneaking suspicion that there are some issues that are so commonplace that they just get overlooked - someone might have a solution, but there again maybe one has as yet never been found - or even looked for.

Ideas?
 

WJG

Registered User
Sep 13, 2020
74
0
I will kick off with a suggestion: academic papers written about dementia should have short plain English summaries.

I have been trying to understand more about my condition, and why damage to both my parietal lobes is having the effect on my life that it does. I'm used to reading and summarising reports - but I get completely baffled by some of the papers I've found online.
 

kindred

Registered User
Apr 8, 2018
2,569
0
I will kick off with a suggestion: academic papers written about dementia should have short plain English summaries.

I have been trying to understand more about my condition, and why damage to both my parietal lobes is having the effect on my life that it does. I'm used to reading and summarising reports - but I get completely baffled by some of the papers I've found online.
And I will enter the fray with the suggestion that anyone researching dementia should spend a month working as a carer ....
Kindred
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,217
0
High Peak
And I will enter the fray with the suggestion that anyone researching dementia should spend a month working as a carer ....
Kindred
Well said! Drives me mad when people spout nonsense about how people with dementia could be helped when they clearly know nothing about the reality of everyday living with dementia!
 

lollyc

Registered User
Sep 9, 2020
160
0
And I will enter the fray with the suggestion that anyone researching dementia should spend a month working as a carer ....
Kindred
Yes, preferably 24 / 7, to get a real understanding of just what it's like. I'm heartily fed up of being given advice by people who have no concept of the reality of dementia.
Something that disappoints me is the apparent lack of research carried out on actual brains. I looked into brain donation. (This is from memory, so apologies if my dates or figures are incorrect.) Brains for Dementia Research has registered 3200 potential donors, since 2007. The donation lists are now closed. So, potentially 3200 brains, to represent anyone who has lived with dementia since 2007. Unfortunately it is actually worse than that. So far 800 brains have actually been harvested. If, possibly like @WJG , you have an unusual flavour of dementia, I wouldn't rate your chances of being represented in those 800.
I also recently read an article from Cambridge University, published in 2012, that suggests delirium could be a possible cause of dementia. Since triggers for delirium are well known, this would seem to be a sensible line of research.
 

Weasell

Registered User
Oct 21, 2019
1,041
0
I would like to see financial research done about the future of the dementia community.
Many of my mothers generation that I have witnessed live to 90.
Most people expect to work for 45 years? ( 20. -65 ?)
That leaves 45 years of someone’s life they expect to live without generating any income.

Not an easy financial model, without care costs being budgeted in.

It amazes me that everyone can go to poverty stricken countries and see the population all doing their very best, and generating income all sorts of ways, but still being poor , yet we are happy to think we live as we do ‘because we are worth it.’
It seems to me there is no government prepared to deliver the bad news to the population, so surely we need independent bodies to look at it.

Is the case that due to the love my age group have for drinking wine and eating they expect us to die much earlier?

Do they expect to find a cure for all types of dementia meaning less people require care?

It would be lovely for someone to have a holistic look at the future, and while I am asking the impossible I will go the extra mile and request the report is produced plain English.

Apologies, I know my answer is not what was required.
 

WJG

Registered User
Sep 13, 2020
74
0
Yes, preferably 24 / 7, to get a real understanding of just what it's like. I'm heartily fed up of being given advice by people who have no concept of the reality of dementia.
Something that disappoints me is the apparent lack of research carried out on actual brains. I looked into brain donation. (This is from memory, so apologies if my dates or figures are incorrect.) Brains for Dementia Research has registered 3200 potential donors, since 2007. The donation lists are now closed. So, potentially 3200 brains, to represent anyone who has lived with dementia since 2007. Unfortunately it is actually worse than that. So far 800 brains have actually been harvested. If, possibly like @WJG , you have an unusual flavour of dementia, I wouldn't rate your chances of being represented in those 800.
I also recently read an article from Cambridge University, published in 2012, that suggests delirium could be a possible cause of dementia. Since triggers for delirium are well known, this would seem to be a sensible line of research.
I've donated my brain in advance - and I would be happy to donate my 'virtual brain' to anyone that wants it. It occurs to me that the increased use of imaging should mean that we now have a chance to match images and diagnoses on a large scale - but this would depend upon sufficient numbers of scans being made available. I would be perfectly happy for my scans to be used for research - but no one has asked me about this, so I assume it doesn't happen.
I continue to have a naive faith that AI could sift through matched diagnoses and images to refine diagnosis in the future.
 

WJG

Registered User
Sep 13, 2020
74
0
Well said! Drives me mad when people spout nonsense about how people with dementia could be helped when they clearly know nothing about the reality of everyday living with dementia!
I get annoyed by people essentially denying me the existence of my condition - none too sure how my reality could be replicated for them though!
 

lollyc

Registered User
Sep 9, 2020
160
0
I've donated my brain in advance - and I would be happy to donate my 'virtual brain' to anyone that wants it. It occurs to me that the increased use of imaging should mean that we now have a chance to match images and diagnoses on a large scale - but this would depend upon sufficient numbers of scans being made available. I would be perfectly happy for my scans to be used for research - but no one has asked me about this, so I assume it doesn't happen.
I continue to have a naive faith that AI could sift through matched diagnoses and images to refine diagnosis in the future.
I'm so pleased you have been able to register to donate - that's not an option at the moment, as far as I am aware. It seems logical that comparison of brains - either postmortem, or via scans - along with symptoms displayed , would further diagnosis and treatment.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,217
0
High Peak
Perhaps the problem is that brains that are donated are from late stage dementia patients who have died. (Hard to donate before you are dead!) They could probably learn more from brains in the very early stages before symptoms start... and that would be difficult to achieve.

@WJG Your suggestion of offering your scans for research is a good one. It would be even better if you could continue to have regular scans so comparisons could be made in the future. However, I fear that once you've been given a diagnosis you are unlikely to have further scans.
 

lollyc

Registered User
Sep 9, 2020
160
0
Perhaps the problem is that brains that are donated are from late stage dementia patients who have died. (Hard to donate before you are dead!) They could probably learn more from brains in the very early stages before symptoms start... and that would be difficult to achieve.

@WJG Your suggestion of offering your scans for research is a good one. It would be even better if you could continue to have regular scans so comparisons could be made in the future. However, I fear that once you've been given a diagnosis you are unlikely to have further scans.
I agree that concentrating only on those with dementia would give a very specific skew, whether postmortem samples or scans. What is actually needed is donors from across the spectrum, so that 'normal' can be compared with diseased. It needs lots of brains, not 800! We already know that there is not always much correlation between damage and disease. Why is it that neuroplasticity doesn't compensate for losses in dementia patients? Of course, it may be that, ultimately, brain analysis is a poor diagnostic tool. We simply don't know enough.
 

WJG

Registered User
Sep 13, 2020
74
0
I agree that concentrating only on those with dementia would give a very specific skew, whether postmortem samples or scans. What is actually needed is donors from across the spectrum, so that 'normal' can be compared with diseased. It needs lots of brains, not 800! We already know that there is not always much correlation between damage and disease. Why is it that neuroplasticity doesn't compensate for losses in dementia patients? Of course, it may be that, ultimately, brain analysis is a poor diagnostic tool. We simply don't know enough.
I would presume that plasticity cannot work if particular ‘circuits’ are damaged - other parts of the brain perform other functions, so presumably work in subtly different ways