Why I love my own research into living better with dementia

 

It more than nauseates me when I see undisclosed conflicts of interest. It makes me violently pissed off.

I don’t like it when Big Charity does not disclose that a document promoting early diagnosis of dementia, without calling for better resources for workforce training or post-diagnostic support, was sponsored by a drug company.

Conflicts of interest are not necessarily materially significant, but it is for members of the general public to judge. The Declaration of Helsinki makes it patently clear that negative results should be published as well as positive results.

There’s a fundamental problem with the case for screening for Alzheimer’s disease. Even if there were an inexpensive reliable test which is sensitive to early deficits in cognition in people with early Alzheimer’s disease, and that test is not sensitive to other medical conditions such as pure unipolar depression, the case for screening cannot stand.

This is due to two reasons. The track record of Big Pharma in finding a cure for Alzheimer’s Disease in the last two decades at least has been abysmal, whether you’re talking about symptomatic treatment or slowing of progression for a meaningful number for a meaningful time period.

Secondly, and equally significantly I feel, is that we simply don’t have money going into what living better with dementia might look like – where for example are trials into looking at GPS tracking systems for people with dementia, or for music improving quality of life?

I am in fact in the 1%, but not in the traditional general election sense. I am the “other” that does medical research.

Project update slides for PPI Working Group

I am regulated on the medical register, but do not get paid in any form for the research. And yet I have presented on my own at Alzheimer’s Europe and I am about to present at the Alzheimer’s Disease International conference in Perth later this month.

But there’s point in rubbishing what I do.

I have published one book ‘Living well with dementia’ last year, starvation in the midst of plenty bookwise, meaning that there are few evidence-based books on wellbeing in a climate where there’s no shortage of funds for research apparently.

I am about to publish another. Even  though I get no support in doing so, I actively promote research into dementia.

That was a half-truth, in fact.

I once got a free T shirt, and I actively promote research into dementia.

JDR-2

There are people in this country whose energy I could never match – such as Chris Roberts, Tommy Dunne, Agnes Houston, Tommy Whitelaw.

There are people abroad who are utterly amazing. I won’t embarrass them by naming them.

And frankly I couldn’t give a damn about people with long titles and important positions who proclaim themselves as ‘experts’ into dementia, whose self-righteousness I can spot a mile off.

It is not hyperbolic to say that this self-congratulation is to some extent justified by me having a huge return on investment – that is, my return on investment is astronomical given that I do not receive any grants.

Many people with dementia, and people closest to them, care about my research, and I care about that.

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  • Thanks for the interesting post!
    I am also finding it is hard to get a position researching dementia unless it’s regarding pharmaceuticals or biological processes. As a gerontologist, I have studied the psychological, sociological, and biological processes of aging, and I now specialize in non-pharmacological treatment for dementia (specifically, technology like GPS and smart homes to improve quality of life with dementia). While I find there are is a lot of interest in this area, there is not a lot of funding….yet. I have taken a handful of internships since finishing my PhD and 2 of them are researching ways to find funding, and one is for starting a program using music therapy. Let’s hope the allocation of money for dementia research is more balanced in the coming years!

  • Thanks Carrie, I share your pain!

  • Nice post dear Shibley. I thank my lucky stars that my private research (into our immediate needs) has been guided by the wealth and breadth of your knowledge, your generosity in sharing that, and your political commitment to change.

  • I care; am tremendously impressed, and very much look forward to meeting your in person. 😀 — Tru

  • Thanks hugely Lynda and Tru! XXX Flying to Perth tomorrow evening (very late)