The Does and the Don’ts

As I’ve read post, it became clear that there is a divide often between those that want to know the diagnosis and those that don’t.

It does seem to be divided by which position you are in. If you are the Carer, then you seem to want a diagnosis to verify what you’ve been saying all along and then there is the one that is showing the signs, that really do not want to be told!

I would ask, what is the benefit of knowing? I’m not sure if this means you can claim benefits that will help in the care, but other than that, there does seem very little to be gained. I am talking from the position of have been told I have dementia, so as you may expect, my view is slightly biased.
It is also clear to me that both those looking after and those being looked after, know that there is a problem and what the problems are related to. Often it seems the moment those problems first start to manifest themselves are also quite marked.

Having just read this post, ‘Spotting the early signs of dementia: What’s the point.’ I’m still at a loss to know why anyone would want to know, unless there is something that can be done to change the course of it!?

It does state that recently a number of trials testing new treatments for dementia have failed, but they believe it might be because they are looking a people in which the condition has gone too far!?
Firstly, billions have been put into research to find a treatment and none have proven any benefit as a cure! Secondly, why does the system still insist on delaying any testing and assessments for people that first raise concerns. It seems to be that by the time a diagnosis is given, for many, the prognosis is 99% an end game!?

The research states that changes in the brain associated with dementia my begin up to fifteen years before the symptoms begin. Apparently if they could detect these people, they could start testing more treatments.

My questions:

Where has this 15 year figure come from, because if you do a bit of research yourself, this figure changes?

What treatments are they talking about, the same treatments they are using now, in the hope that using them earlier will solve the problem?

What are the treatments for and what is the hope?

They talk of looking for triggers that lead to dementia developing, but this is not an original idea. This has been a question since dementia research begun!

Where is the research into the history of people with dementia, what happened before the signs, looking at medical records and accounts that may seem to have no direct connection, such as bereavement and depression?

They talk of novel ways to diagnose dementia, but they don’t say what they are looking for?

Simple blood test to detect what?

AI to understand the impact of tau and amyloid plaques affect nerve cells. An area that has still no proven causal link to dementia.

VR to help assess memory and behavioural problems. Should try asking the people involved, the demented and the carers!?

GameChanger and using smartphones to look at an idea called healthy ageing. I though ageing didn’t play a part, or am I reading the wrong research papers?

The biggest resource that is used the least…. the carers and the cared for! When will these people be seen as the solution to the problems, rather than just the problem, the lab rats and research as just something to complete a degree, master, or doctorate?

It is surely obvious to most by now, that dementia is not something we catch! There is a cause, it starts early for most.

If research stays with the same dogmatic framework, progress will continue to be slow, or as so far, none existent! Millions and Billions contiune to be wasted! In the meantime, millions around the world are given little or no hope and for those that are oblivious, they are hoping to come and give you be bad news soon!

You may be asking why am I so worried about this and the answer is simple, I’m one of those sent home to die, without hope, in an uncertain manner, lost, alone and scared! While people play with their games and blood test. If you was me, what would you do?

Please comment on anything I have said, or if you have any suggestions, ideas or something that you do and would like to share, then please fill in the form below and Click Send. It will come straight to me. Thank You!

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