Life all good selfies, co-production for research into dementia might not be as it appears

This was the famous selfie from the Oscars which went viral all over the internet, partly thanks to social networking sites such as Twitter.

selfie 1

But this snap photo explains why Liza Minelli was unable to make it.

selfie 2

That things might not be quite as they first appear is nothing new.

Kate Swaffer (@KateSwaffer), living with dementia in Adelaide, has remarked in the past how she feels like a duck all serene on the surface, but paddling really hard underneath.

The co-production of public services has been defined in a variety of ways – e.g. “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” (New Economics Foundation).

Or in the alternative, “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).

Research into dementia, more so following the G8 Dementia Summit, has been dominated by analysis of Big Data genetics with a view to ascertaining risk pools and personalised medicine, possibly means for asymptomatic screening or early detection, and new pharmacological interventions.

The amount of resource allocation put into this some might say has not been matched by the successful outcomes from this research, though the corporate capture in the large charity, politics and media are well known.

But I believe strongly research into quality of care, or indeed living well with dementia in support settings, should not be regarded as ‘inferior’.

Careful research attention should be put into assistive technologies, assistive living, the innovation culture, design of wards and homes, and, of course, how you measure living well in the first place.

Co-production, however, offers a chance for people with early dementia to be able to shape the services for care, as well as to shape research.

I have latterly become involved in a crowdfunding campaign where I explain the critical importance of decisions for a person with dementia in the science of dementia as well as the implications for our law on mental capacity.

But I also want this to initiate a dialogue between people with early dementia and other interested parties with the law and neuroscience, and other possible stakeholders such as the NHS.

I’m mindful that my book ‘Living well with dementia’ does look through the “personhood lens” – a lens which has done much to challenge the stigma and discrimination associated with dementia – and some people don’t like that.

Darren Gormley (@mrdarrengormley) immediately pointed me to an area of work, in particular a paper called “From personhood to citizenship: Broadening the lens for dementia practice and research” by Ruth Bartlett and Deborah O’Connor in Journal of Aging Studies 21 (2007) 107–118.

“One of the main boundaries of personhood is its lack of political dimension. In cognate literatures, including social gerontology, critical psychiatry and disability studies, a citizenship lens is used to promote the status of discriminated groups of people to that of an equal citizen, with the same entitlements as everyone else.”

“These disciplines use citizenship to understand and expose discrimination against marginalized groups such as people with physical disabilities and to reframe and politicize understanding of the experiences of people with mental health conditions; the scope of this work is wide ranging and goes beyond care issues to include discrimination in the workplace and communities generally.”

The need to promote citizenship, as well as personhood, is beginning to be recognised within the dementia care literature, and I am hoping that this with an emphasis on living well with dementia will percolate into the research arena too.

A result of this shift is that, gradually, research has begun to emerge aimed at capturing the perspectives of persons with dementia. This body of research now clearly documents that persons with dementia are often quite aware of their situation, and can contribute important and unique insights about their experiences and needs.

I have often whinged about the word ‘sufferer’ so I was particularly interested to see the authors make the following remark.

“In addition, people with dementia were generally regarded as a ‘sufferer’ lacking insight into, and ability to articulate, their situation. This discourse silenced people with dementia. However, since attention was drawn to personhood and the exclusion of the perspectives of persons with dementia in understanding and influencing the dementia experience the focus has shifted to incorporating the voices and understandings of persons with dementia into both research and practice.”

However, my own particular interest is research for dementia, so this intrigued me massively since, if you pardon my phraseology, some of my best friends live successfully with dementia.

“The importance of making the shift to citizenship is further evidenced when one considers the potential direction of dementia care research. Currently, Alzheimer’s Society, UK has people with dementia on its research review panel, and there is a small (growing) body of literature to help academic researchers involve people with dementia more creatively in the research process.”

“People with dementia are clearly seen and treated as important players in the research process. However, little of the research looking at user perspective has gone to the next step of either pulling together or examining what happens in research projects in a way that is political.”

“For example, in most user perspective studies, individual needs are spoken of and contextualised using themes or general categories related to care provision; data are not generally seen in the wider political context of the need for social change.”

“Additionally, people with dementia are rarely involved in the early formulation and planning of projects, which raises questions about the relevance of current research to people with dementia. The point is not to criticize user perspective studies but to highlight how a shift to citizenship would ensure people with dementia were seen and treated as people with power, specifically people with the power to instigate and shape the research agenda.”

And that for me is the issue of a two tier nature of who decides research agendas in practice.

Kate Swaffer and I often discuss behind the scenes our concerns about ‘tokenism’, both from quite different personal viewpoints but with similar themes.

How things appear might not actually how they are in reality.

Ruth Bartlett, to her credit, has also developed a ‘toolkit’ draws on my experiences of using diaries for research into the lives of people with dementia who campaign for “social change”.

Like the famous selfie at the Oscars.

I really had not intended to start a ‘social movement’, but this is in fact exactly what I wish to do now.

And I’m clearly bound to be very happy that currently there’s a massive ESRC grant looking into this.

“Finding that people with dementia are willing and able to campaign, and presenting this at national and international conferences, has captivated academics and improved their understanding of people with this condition.”

This also has profound implications for service development for dementia consistent with the current trajectory.

A rhetoric of ‘user involvement’ became a central part of NHS policy during the establishment of the Community Health Councils in 1973. This had continued through the proliferation of “New Public Management” principles and the growing importance of measures of satisfaction in the 1980s. The NHS and Community Care Act [1990] established a formal requirement for service user involvement in service planning.

From 1997, patient and public involvement were a central tenet of New Labour’s NHS modernisation agenda, and the NHS Plan was committed to creating a patient-centred NHS with user needs at the centre of service design and delivery.

I dare say all of this will be known to Simon Stevens, incoming head of NHS England and one of the key-architects of the NHS Plan.

Arguably, the roots of the phenomenon of ‘experts by experience’, potentially an abreaction to the medicalisation of mental illness, can be found in a history of mental health activism as far back as 1620, when inmates at “The Bedlam Asylum” petitioned for their rights.

After some initial disgruntlement, I’ve now decided I would never dream myself of being an ‘expert’ in anything to do with dementia, but rather a well-informed enthusiast.

People living with dementia and all carers including unpaid caregivers are the real experts.

The somewhat political term “survivors” refers to those who have survived not only their mental health difficulties, but also experiences of psychiatric services, and/or the accompanying general social exclusion.

Or you can the viewpoint, particularly if you’ve been influenced by some, that ‘users’ of mental health services are ‘consumers’ and help to design them.

This is of course all very timely. The Kings Fund have recently published its interim report from the “Independent Commission on the Future of Health and Social Care in England” by Kate Barker and colleagues.

A lack of co-production possibly caused the problems in entitlement and funding which meant Sally (@nursemaiden) was at the receiving end of a bad experience of services looking after her father who was living with dementia.

In fact Sally has written about this in the Foreword to my book.

What unites both the consumerist subject position of service user and the position of “survivors”, is that they are both legitimised by virtue of their experiences of mental distress and/or of service (ab)use, and seek progressive developments in the treatment, perception and governance of the experiences of mental health.

I’m one such survivor, as I’m in recovery from alcoholism for seven continuous years now. I also live with physical disability.

It’s not enough merely to ‘involve’ carers though; carers patently need to be involved in research as without them the entire service would collapse. And carers themselves often need support, over all sorts of health issues, legal or financial matters.

It’s also essential to ‘involve’ people actually living with dementia who may or may not have some similar concerns, and some different.

But ‘involving’ is not enough.

I feel passionately that people with early dementia should be given the power and control to shape the research agenda in their interests, such as the brilliant work by Ruth Bartlett. This may or may not include living well with dementia: that’s not my choice, but I’m pretty sure I  know what the answer might be. Otherwise, ‘co-production’ is merely an illusion of involvement, and as regards living well with dementia is not at all what it seems. Suffice to say, I am not afraid about shouting loud about this on behalf of people living well with dementia.

I have not set out to build a social movement, but I want to do this for persons with early dementia

I received this message last night.

private message

The thing is, I don’t buy into the profoundly negative imagery of the media, including memes such as “crippling”, “horrific”, “timebomb” and “explosion”.

Whilst some people, and caregivers, are undeniably “suffering”, you can’t expect all people to agree with this particular narrative at all times, I feel.

One of the things I’ll never forget was when my Ph.D. supervisor, Prof John Hodges, received a complaint about me doing neurocognitive assessments in a person with frontal dementia back in 1997.

This type of dementia, commoner in an age group below 60, is characterised by a personality and behavioural change early on, often in the absence of deficits in thinking such as memory or perception. You need an account from someone very close to that person with dementia, as the person himself or herself can have no insight into the changes.

I remember saying to the wife of a young man with this type of dementia, “I would never have guessed that he had a dementia”. This comment had upset her very much, and by that stage I was years into my medical training.

This one event is something I’ve never forgotten in the 16 years subsequently.

I remember I literally didn’t sleep for a week, and I was profoundly upset by this. But it does lie to the heart of some of my reservations about the term ‘dementia friendly communities’. There are some people for whom you would not be able to tell they were living with dementia.

I understand the focus on memory problems in the general media, as this can be a dominant presentation in typical Alzheimer’s disease, the commonest form of dementia. But memory is only one of the cognitive functions we have.

What unites all people with dementia is that the law makes a verdict on whether they are able to make decisions. This is called legal capacity.

Decisions impact on many aspects of life, such as working out how to spend your money, or which treatment to go for in hospital.

And capacity is very topical. Not only is the House of Lords seeking to update the Mental Capacity Act (2005), but also neuroscientists currently want to know what members of the public think about their research on decisions.

This is therefore not about denying compassion or dignity for all persons with dementia. It’s about redressing a power balance, where I feel people who’ve just received a diagnosis of dementia might learn something constructive about dementia, decisions and science of how to influence decisions.

This is profoundly about having a discussion with persons with dementia.

I’ve been on the receiving end of ‘look at my website’ and I find it intensely nauseating. But I wish my website, which I intend to build with funds from a crowdfunding campaign and scientific grant bodies, to allow persons with dementia to think about their own decisions.

It’s well known in the science of decisions for example that some ‘bad’ decisions can be avoided by not following ‘hot impulses’ or following the ‘herd effect’.

So here is my explanatory video:

Whilst I have been urged to make this campaign so that ‘it touches every person with dementia’, I do also want a grown up conversation without dumbing down any of the concepts.

A lot of feedback has concentrated on the ‘social movement’ aspect of it, but I should like to say whilst I say I would like to build one, I really mean it’s important for me personally that this gathers some momentum.

And I think it will from initial feedback from persons with dementia, and even people involved in the NHS and social care.

All too easily dementia policy can have more regard to marketing and tokenism, which lends itself to commissioning ‘tick box’ culture. My campaign is not for them.

And I’ve got a bit of a shock for some people – I am determined to make a big success of it.

My plans for a crowdfunding campaign to empower decisions in people with early dementia

The power of decisions for people living with early dementia

This project is dedicated to all persons living with dementia, carers and caregivers, all other people touched by dementia past present or future, and more.

The need

Decisions are crucial to our lives. Every person is unique.

A person’s ability to make decisions is defined legally as his or her “capacity”.

The brain is fascinating. It’s also incredibly complex. Neuroscience is beginning to work out how decision-making is affected in people with early dementia.

We’ve been told by many people who’ve been diagnosed with dementia that they’re interested in how the brain makes decisions.

Dementia can happen to anyone, but we should be motivated as all members in society to encourage people with dementia to live as well as possible.

Every individual with dementia is different. There are about a hundred different types of dementia.

The aim of this project is to build a social movement to empower people living with early dementia to think about decision-making. It’s about explaining the science of decisions in early decision. This is also about inviting people including those with dementia to think about their decision-making in an exciting way, and to participate in ways of influencing them for the better.


Our idea

This project is to design a website for all to enjoy, but including people who’ve been newly diagnosed with dementia.

This will provide exciting videos about why decisions are so pivotal in understanding dementia. We hope to produce exciting creative films to explore this topic by asking a professional filmmaker, James Murray-White, with a known interest in dementia and a proven record in film making.

We will design our website is so that they can understand the science of what a dementia is and how it affects decisions. It’ll also have an interactive blog.

The website will build on the RSA’s “Social Brain” findings in “Steer” (2010), but will also make use of cutting-edge research such as Daniel Kahneman’s “Thinking fast and slow”.

People with the earliest stages of dementia can think about their decisions.

People will know about it through my Twitter (@legalaware). We’ll also set up a special new Twitter account to promote the project.


The future

People with dementia can also tell neuroscientists what they feel they should be researching, and tell lawyers what they think about “capacity”.

They can get directly involved in policy making without any middle men, in keeping with the RSA’s philosophy and values.

With being empowered to make better decisions, people with early dementia can also lead communities. They would be not just be “involved” in communities which are “friendly” to them.

We’re also hoping that as the project establishes itself it will provide a core offering in NHS packages for people living well with dementia, a key national policy priority.


Who’s behind it?

Our team consists of three people.

1. Dr Shibley Rahman FRSA – academic in dementia, with book chapters, a book, original research papers and keen blogger on dementia

2. Dr Marian Naidoo FRSA – dementia specialist in dementia-friendly communities

3. Kate Swaffer – a person living with dementia in Adelaide, Australia; Chair, Dementia Advisory Committee at Alzheimer’s Australia; Volunteer; a powerful advocate for people living with dementia, whose blog already has a powerful international outreach.



Please support this project.

We are trying to raise £2500.

The ‘rewards’ for participating are awesome.

Backers will get

1. For up to 50 people: £5 or more

A special name mention/shout-out on the website,

2. For up to 30 people: Pledge £15 or more

a special limited edition e-book by the authors explaining decisions, the science of how decisions are affected in early dementia, and what all people might do to influence their decision-making

3. For up to 30 people: Pledge £15 or more

a special limited edition attractive mug so that you can demonstrate your personal involvement with this project; price includes postage and packing

4. For up to 30 people: Pledge £20 or more

a special limited edition attractive T-shirt so that you can demonstrate your personal involvement with this project; price includes postage and packing.

5. For up to 30 people: Pledge £25 or more

a special limited edition attractive tote bag so that you can demonstrate your personal involvement with this project; price includes postage and packing

6. For up to 30 people: Access to special privileged areas of the website for £40 or more pledges

  • we are offering access through a special username and password unlimited access to certain protected parts of the website
  • there will be special information sheets about the science of decisions and early dementia, and how they can be influenced; with special access to other resources such as videos or blog articles.
  • this may be especially of interest to NHS commissioners.

6. For up to 20 people: Mentions in my new book ‘Living better with dementia’ for £30 or more pledges

I have already written a well-received book on ‘Living well with dementia’ which has very good reviews. I am offering exclusively mentions for up to 20 people involved in this project special mentions in my follow-up book ‘Living better with dementia’.

7. For up to 30 people: Invitations to a special workshop afternoon for £30 or more pledges

In our special-invite only workshops, we’ll be presenting the science of decisions, and be discussing how these are affected in early dementia, and what we know from the science about what can be done to influence them.

8. Recognition as a sponsor – pledges of £100 or more

We’ll proudly recognise your contribution on our website for a year and in our promotion of this initiative, which could include in NHS commissioning rounds.


The future

A chance to shape policy through NHS strategic commissioning decisions.



Risks and challenges

We feel that this is an incredibly exciting project, concentrating on what people with early dementia can do, rather than what they cannot do.

The main risk is that our website, described above, fails to explain the importance of decisions in early dementia. We hope as well experienced authors we’ll do a very good job of it though.

But we hope the resources will have been written in a way that is easily accessible, and inclusive by experts with considerable experience in this area.

We will instruct a proficient designer of websites, with a proven track record, to make the website for us.

Our project is all about people working together.

That brings challenges to make sure enough people feel engaged, but our experience from our involvement in social media (e.g. @legalaware with 11000 followers), interested people love being engaged.

We have put our time and effort into these projects because we believe in people getting involved – with each other, with their community, with making things better.



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Visit to see more RSA-backed projects and find out more about the RSA.

Thank you.