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Not much is certain…

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Benjamin Franklin (1706-90) in a letter to Jean-Baptiste Leroy, 1789, which was re-printed in The Works of Benjamin Franklin, 1817 uttered:

"In this world nothing can be said to be certain, except death and taxes."

Actually, when I happened to meet Prof Martin Prince last week in the UK Dementia Congress (November 2015) in Telford, Prof Martin Prince joked with me that perhaps one should add ‘population ageing’.

This increase in the life expectancy of many in the world is just factor we have to take into account in doing the population ‘maths’ on the cost and impact of dementia. I am inherently a ‘glass half full’ kinda guy, which means I view people in terms of the value they bring. We need to cherish the wisdom and experiences of those 47 million people around the world, living with dementia; nearly 900,000, it is said, in the UK.

This uncertainty about how many people live with dementia, particularly in low and middle income countries, intrigues me. Another topic closely associated with uncertainty also intrigues me – that of risk, for the sake of argument defined for an event for a finite probability of happening.

Risk happens to be pervasive in much of dementia research work, especially in opining about whether someone is at ‘high risk’ of developing dementia at later date. This guessing game is either dangerous or wise, depending on how you value the forecasting of needs of health services. A private insurance system, based on risk, would be highly punitive to that scenario where dementia runs very tightly in families.

My perspective is as an ‘unoffical researcher’. I don’t work for any university or business, and I certainly don’t have any REF (the Research Excellence Framework - a system which assesses the quality of research in the UK) targets to worry about for academic research. I don’t have a source of funding for my work, which also unfetters me from any conflicts.

I happen to believe research has fundamental worth in itself, even if there is little commercial application of some of it. But it is also the case that there is much societal value in a lot of it. Whilst I don’t share in the hyperbole of a ‘cure for dementia’, I too would like better symptomatic treatments for all the dementias, not just Alzheimer’s disease, or even possibly therapy which could slow right down or even prevent the disease process. And who wouldn’t subscribe to this agenda of mantra of motherhood and apple pie?

Whatever research or service provision is done though, I think that people living with dementia and carers must be involved and engaged from the earliest stages. I would also like to see much greater, authentic, representation of people living with dementia and carers in the media, in a realistic context, and in the arts and culture generally, such as in theatre.

 

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