Public engagement with science must be two-way: that’s why persons with early dementia are so important

I spent some of this afternoon at the Wellcome Trust on Euston Road. Euston Road is of course home of the oldest profession, as well as the General Medical Council too.

I was invited to go there to discuss my plans to bring about a behavioural change in dementia-friendly communities. You see, for people with early dementia, say perhaps people with newly diagnosed dementia and full legal capacity, I feel we should be talking about communities led by people with early dementia.

The last few years for me as a person with two long term conditions, including physical disability, have really given me an urge to speak out on behalf of people who can become too easily trapped by being ‘medicalised’.

I have had endless reports of persons with dementia who have received no details about their dementia from the medical profession on initial diagnosis, and at worst simply given an information pack.

This is not good enough.

How we all make decisions is a fundamental part of life. When a person loses the ability to make decisions, it can be a defining moment – loss of capacity triggers certain legal pathways. Whilst the state of the law on capacity is quite good (through the Mental Capacity Act 2005), it is likely that further welcome refinements in the law on capacity will be seen through the current consultation on the said act.

I have been thinking about applying for a big grant to fund activities in allowing a discussion of decision-making in people with early diagnosis, the science of decisions, and what one might do to influence your decision-making (such as not following the herd).

I’ve also felt that quite substantial amounts of money get pumped into Ivory Tower laboratories on decision-making, but scientists would benefit from learning from people with early dementia regarding what they should research next, as much as informing people with early dementia what the latest findings in decisions neuroscience are.

Also, the medical profession and others are notoriously bad at asking people with dementia what they think about their own decision making. This ‘self reflection’ literature is woefully small, and this gap I feel should be remedied.

I simply don’t think that what scientific funding bodies do has necessarily to interfere with the NHS. I think a motivation to explain and discuss the science of decisions to stimulate a public debate is separable from what the NHS does to encourage people to live well with dementia. This debate can not influence what scientists do, but can influence what lawyers and parliament wish to do about capacity in dementia.

Persons can be encouraged to live well with dementia, and when they become ill they become patients of the NHS. Living well with dementia is for me a philosophy, not a healthcare target. If I can do something to promote my philosophy and help people, I will have achieved where many people in their traditional rôles as medical doctors have gloriously failed as regards dementia.

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