Why not have a global summit on living well with dementia?

Yesterday, the UK Department of Health plumbed to new low depths.

Actually, the week had started well. The Department’s 2014/5 corporate strategy which they had published included ageing and living well with dementia as a top priority.

The day before yesterday, the All Party Parliamentary Group on dementia had produced a thought provoking report which helped to map out a future landscape for English dementia policy.

This had included care coordinators, which I think would be very useful provided we get the appointment of such a rôle correct with people with the right skills, behaviours and experiences.

This included a proposal for “integrated care“. I personally feel we should attempt to introduce a large scale cultural transformation towards whole person care.

But why on earth nothing on specialist nurses as a critical rôle in the workforce?

Is it because the APPG report was hugely biased towards the Alzheimer’s Society not other large dementia charities such as Dementia UK?

Many of us are rightly concerned about the provision of specialist clinical nurses such as Admiral nurses.

But the summit yesterday #globaldementia was painfully bad in intellectual balance. The Department of Health Twitter account for the event was clearly manned by people who have little experience in the current policy of dementia in England.

Their “live blog” was as fascinating as watching a mouldy slice of Stilton get even more mouldy.

The number of tweets by members of the Department of Health far outweighed the tweets from elsewhere, relative to the sheer numbers in each of the two populations. I meanwhile continued to tweet a not inconsiderable number of tweets, including my own blogposts on language, whole person care, and social prescribing.

And this for me was the most telling slide of what has gone fundamentally wrong.

The use of toxic language to meet targets:

live stream

I have worked in research for dementia not continuously for seventeen years, including the top mark in my MBA in marketing.

I am quite sensitive to corporate marketing.

The drug companies need to come clean and to be honest.

They have had two decades of trying to produce a medication to slow progression of dementia. NICE is currently unable to recommend any anti-dementia drug that slows progression, albeit can improve symptoms for a few months.

The opportunity cost for this is incredible.

Both Cameron and Hunt produced unedifying language about dementia such as its effects on “humanity” and “horrible”, while unashamedly talking about the stigma of the wide ranging condition.

One of the key messages of “Dementia Friends“, a £2.4 million funded programme which appeared from nowhere in the current Government by the Department of Health and Social Care Fund, but “an Alzheimer’s Society initiative” (when not ambushed by the phrase “Public Health initiative”), is that “you can live well with dementia”.

Someone please tell this to Dr Dennis Gillings.

THE lowest point of yesterday was Gillings, telling Helga Rohrer, a passionate advocate and person living with dementia, about the need for ‘translationary research’ in response to a direct question about living well with dementia. Such research has been touted as finding a cure for dementia in the forthcoming decades.

He is the “World Dementia Envoy” for a panel which does not even have a direct patient or carer representative.

How completely offensive.

Martin Prince gave a fairly standard patter on an economic situation analysis of intervention after diagnosis. Well respected, he ignored completely the notion of any intervention on the wellbeing of a person with dementia.

But think this through. This would have involved an appreciation of how to measure the effect of an intervention of wellbeing in dementia. What type of dementia for example?

And do drugs affect wellbeing? The answer is actually by and large no.

There have been reported effects of memantine helping with wellbeing in dementia, presumably through affecting predominantly neuropsychiatric symptoms in certain patients (e.g. psychosis or aggression)?

But the drugs thus far have modest COGNITIVE effects. Prof Martin Rossor whom I respect wholly was right not to overinflate their importance, but right to draw attention on some value for some.

Yesterday was a well orchestrated cover, as a “legacy event” for the G8, for the current Government marketing for Pharma.

In the guise of the meme ‘private and public partnership”, please read “Pharma would like some of your State welfare benefits?”

The whole spectacle was unedifying.

It was an insult to people living with dementia.

It was an insult to a social care system which has been stripped of money during this current Government. Why don’t we have an ‘awareness’ campaign for that then?

Put quite simply, it was an obscene insult to many in the field, including academics in wellbeing.

It consolidated the notion of people with dementia being used for “tokenism” purposes.

Looking on the bright side, it was an outstanding example of “tokenism” and “non-participation”, compared to “citizen power”, as per Shelly Arnstein’s work.

I’ll continue blogging on my blog, which I increasingly see as blogging the other side of the story on dementia, while the others shill for Britain. Some unpaid.

Finally, I’ll leave the last word to @KateSwaffer, Consumer Champion for Alzheimer’s Australia, and a person living with dementia:

Kate Swaffer

Time for a change in government.


Acknowledgements: It was Val Hudson who first alerted me to Arnstein’s work; this was a Twitter thread involving me, Val and John Ashton. Val has a longstanding and wide ranging background in dementia, including working for the late great Prof Sir Martin Roth, Emeritus Chair of Psychiatry at the University of Cambridge, inter alia.

Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.


Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:


And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:


When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.