Tag Archives: marketing

Do “the right people” enable change in dementia care?


Whist it is pretty much universally accepted that funding has not kept up with demand in the NHS, yesterday’s capital cash injection for ‘successful pioneers’ for the sustainability and transformation plans was better than nothing, arguably.

My biggest concern for these plans is that they are being set up to fail, if they are not given sufficient financial resources. But I’ve always felt that they should be given a chance to work if two conditions are met. Firstly, that they are not driven by very short time horizons financially (the cost of initial investment initially is high nearly always). Secondly, they should be driven by arguments for better care from practitioners and professionals.

The Alzheimer’s Society is currently running a campaign called ‘Fix Dementia Care’ but it is not entirely clear to me how they intend to fix it.

They indeed call for three things:

1. All hospitals to publish an annual statement of dementia care.

2. Monitor and use the annual dementia statement as part of its Risk Assessment Framework to identify and take action in hospitals where dementia care is inadequate.

3. Care Quality Commission (CQC) to appoint a specialist dementia adviser and include dementia care indicators as part of its Intelligent Monitoring work to improve regulation of dementia services in hospital.

It is hard sometimes for me not to be deeply cynical about the nature of involvement of well meaning people in dementia policy. Around the inception of the Big Society, there was an aim that the third sector would ‘build up the capacity’ of services. Unfortunately, this coincided with austerity-driven cutbacks in public services, so the forging ahead of dementia friendly communities and friendly banking came with drastic cuts to day centres and domiciliary care on its knees.

The “Fix Dementia Care” solution could’ve been written by anyone without a background in dementia, which is what alarms me the most.

For me, it is not simply good enough to heckle loudly from the sidelines and think this is ‘job done’. Big Charity does a nice form of heckling, in that they are highly respected and influential, and very chummy to government. The same people sitting on the same boards, just with different names, running the same conferences, with the same speakers, and the same delegates. And their branding is expensive and nice.

But this is not to address the root of the problem for me. And it won’t in a million years produce ‘meaningful change’, akin to the “million chimpanzees argument”.

I accept the argument that is insufficient simply to ask for more money. However, having witnessed with my own eyes skeleton staff being asked to man hospitals in the name of ‘efficiency savings’, I do have to question the lack of questioning of stripping public services of adequate funding.

Secondly, it relates to the issue that weighing a pig every day does not make the pig fatter. I do not see how such a disproportionate emphasis on regulation, rather than performance management, is meant to be the panacea for dementia care.

It does not address also the need to see what models of care work – for example an important part of wellbeing is to improve the physical and mental health of people with dementia. But this will not always be appropriately through an acute hospital admission, especially if the habitual residence of a person living beyond a diagnosis of dementia is in a care home.

I think ‘speaking truth to power’ no longer is a case where we can reliably expect corporate-like charities to “tell the truth” about the state of the NHS and social care to our current Government. It’s well known that the money to be given to social care for three years, from yesterday’s budget, should have been given as a front-load for next year in itself.

“Speaking truth to power” has become a much underrated trait in these difficult times for dementia practitioners and professionals. There seems to be a somewhat corporate obsession to change, with well meaning people not having the slightest clue about what they’re changing from or to.

All of this is a long distance from the ‘real leaders’ and change catalysts in the NHS being ‘rebels and mavericks’, not people with PRINCE2 diplomas. The fact is that people running change in the main ARE the people with marketing ‘experience’ and PRINCE2 diplomas, and they’re doing the rest of us a massive disservice.  Sadly, the people with the most power tend to be the people with the most influence, even if, for dementia care, they are completely wrong.

I really do wonder whether the ‘right people’ are leading change – whether co-production is a social movement, in the civil rights sense, or just clever marketing producing an ‘offer’? This concerns me most about the brand of ‘dementia friendly communities’.

But I think we have to be brave, and cut our losses. We need to tell corporate-like charity that dementia care won’t be solved by professional brand ambassadors and expensive marketing, and successful e-petitions, but needs substantially more serious professional investment, for example in continuous professional development. Or else ‘policy’ becomes a sub-division of ‘marketing’.

Dementia is not a brand. Get over it.







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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.



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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.

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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.

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