Tag Archives: social movement

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Could educating the workforce in dementia become a real ‘social movement’?

social movement

 

Something extremely odd happened with “Dementia Friends”. Its growth rate was rather sluggish, until the floodgates to Dementia Friends Scotland suddenly opened, and then it became online so that you could become a ‘Dementia Friend’ through a quickie online click.

Call me old-fashioned, but this is not a social movement. This is clever marketing. Likewise if you market ‘Dementia Friends’ through the power of international marketing, and your friends in Big Charity abroad, that is not the same as creating a “global” social movement. That is called international marketing.

The beauty with homogenising ‘Dementia Friends’ into a McDonalds style Big Mac product, where everyone receives the same patties and cheese-based sauce, is that it is easy for bite size chunks about dementia to become propagated – perfect for a broad brush public awareness campaign. And it doesn’t need to be done by specialists, who are in the new post Brexit age overrated anyway.

This confusion about the limitations of ‘Dementia Friends’ has become a big problem for the propensity of some people to call ‘Dementia Friends’ “training”. It is categorically not training. It is not regulated by any of the clinical regulators. To sell ‘Dementia Friends’ as training is a mis-sell. To give the Alzheimer’s Society credit, they never themselves purport “Dementia Friends” as training.

I think it is more than a ‘big problem’ in fact. I think this has opened the floodgates to where Dementia Friends has been used as an inexpensive alternative to real training for staff in care homes who do need to be educated to a competent level, as far as a regulator is concerned, in dementia.

We, in the workforce, need to be crystal clear that social care and NHS are on its knees. It’s no good squirrelling away this money in the Budget for grammar schools, or a Brexit slush fund, when all clinicians need to be transparent and speak out openly against the dangerous cuts in care.

All this leads to me to say that clinicians and practitioners in dementia of whatever background, physiotherapy, speech and language therapy, occupational therapy, social care/mental health, physician or psychiatrist, should help in educating each other, about evidence-based good practice in dementia.

I think we should not wait to be selected as ‘special’ from Health Education England, or the such like, but we should use new media to educate the workforce as the situation demands it.

I’ve decided to get the ball rolling by publishing a free 100 page document on ‘Signposts to dementia care’ which sets out the major topics in the new Dementia Core Skills for Learning and Training Framework.

You can download my free document here.

I have produced this book without any funding or commissions at all. I suggest that if you have the time, you can help build a social movement where the workforce can become more dementia-literate in such a way that is not dependent on big corporate sponsorship. Many of us are simply sick of the growth of dementia being sold as a ‘product’ with more emphasis on where the next grant is coming from or the latest brand or PR stunt. There are powerful principles of health equity and universal coverage at stake.

 

@dr_shibley

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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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