English dementia policy may be weighted too much towards prevention, diagnosis and future cure

cake slice

In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

The need for a strategy

Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my constructive knowledge.

There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could, in theory, “spoil the cake”.

The importance of the cure but at what cost?

Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

As such, you don’t ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging. You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators.

In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again it is argued that no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

We have to talk about care

Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

Prevention and seeking the diagnosis

The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma.

Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).


With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

[The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

Co-production, co-design and co-construction of dementia policy

I will be giving a talk on “Co-production, co-design and co-construction of dementia policy”

to book tickets and for venue details please see here


Here is the list of speakers for my night!

Jo Moriarty (Researcher, Policy at Kings)
Professor Jill Manthorpe (Professor of Social Work at Kings College London)
Dr. Julia Warrener (Herts Uni Professional Academic Lead for Social Work)
Dr. Shibley Rahman (Author, Dementia Researcher)
Sharon Shoesmith (Researcher, Writer, Public Speaker).

The timing of speakers for Feb 3rd 2016 is as follows 6-9:30pm
6pm arrival
6:30-45 Zoe
6:45-7:30 Jo and Jill
7:30-8 Julia
8-8:20 Break/food
8:20-50 Shibley

The flyer is here.


There will be pizzas on the night for anyone wondering about food and refreshments will be free – wine, snacks, tea and coffee. That should keep the energy high.

The line up (apart from me) is incredible. I do strongly urge you to come if you’re around and you’re interested in the topic of continuing to pursue research and evidence to better practice. I hope there to be much much engagement and participation for my talk, aimed at qualified social workers or social workers in training.

Please follow the organiser Zoe Betts (@iamsocialcare). Zoe’s motivation for doing this is described here in this excellent Community Care article.

Here is my presentation

The term ‘co-production’ is widely misused, and this has to stop. The intentions are good.

I don’t wish to perceived as a ‘heretic’, despite people’s open and settled views in not labelling people. But please give me permission, oh thou people who say we shouldn’t ask for permission, to stray away from the song sheet for a moment.

One or two individuals like Kate Swaffer and Alison Cameron really ‘get it’, so the discussion below is not to do with them.

‘Co-production’ is a handy concept of designing and implementing services together with the ‘end users’ from the start. I have no wish to embrace a ‘status quo’ argument but it is a fact that there are many professionals and practitioners who are determined to get to the bottom of the beliefs, concerns and expectations of patients, clients, or howeverso called. The narrative about this is often confused by a moral panic whipped up from people involved in commissioning, some who are brokers, and journalists, and others.

I do not perceive myself as a doctor, even though I have received a medical degree, and am a registered medical professional. I do not perceive myself as a ‘patient’ despite living with a number of chronic long term conditions, going about my life and work, and having survived a six week stint unconscious on the intensive care unit of the Royal Free Hospital. So when others talk of ‘conversations between doctors and patients’, it is for me like talking to myself.

I think the work of the Royal College of Physicians in ‘Future Hospitals’ is brilliant – but it is driven by people with clear leadership skills, common sense, and a clear sense of crowdsourcing good ideas wherever they come from.

But at the other extreme there are quite aggressive egos who give co-production a bad name. I am reliably told that ‘co-production’ does not refer to rebranding of tokenistic engagement designed as a ‘tick box exercise’ to get funding.

And this is worth bearing in mind by Alison?


We surely all agree, whatever our starting points, that it’d be disastrous to throw the baby out with the bathwater, as Alison too rightly advises. The issue that real change is required, even if the change is more attractive than the activities of some of the ‘change activists’.

For all the talk of ‘inclusivity’, the norm is that I am never asked for my opinion in these discussions.

co production image

I think there is an advantage of listening carefully, rather than merely hearing and loudly boasting about hearing, to patients and users of services, as that is where you can glean often the most direct information about how things are failing. But if I were take a chip out of the motherboard of a LCD TV set it would not necessarily mean that the function of that chip is to make a picture on the TV set. Listening to patients and users tends to be badly done in the NHS, as evidenced by the sheer volume of complaints which never get acted upon. The NHS and social care have a generic problem in not valuing feedback, good or bad, and this fundamental issue needs to be addressed together with ‘co-production’.

I haven’t defined co-production as it means different things to different people, which is a facet of it which many find intrinsically attractive as ‘motherhood and apple pie’. But the definition does matter.

The co-production of public services has been defined, as cited in Wikipedia, 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 “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).

This from Wikipedia also caught my eye:

“The term ‘co-production’ was originally coined in the late 1970s by Elinor Ostrom and colleagues at Indiana University to explain why neighbourhood crime rates went up in Chicago when the city’s police officers retreated from the beat into cars.  Similarly to Jane Jacobs’ assessment of the importance of long-time residents to the safety and vitality of New Yorks old neighbourhoods, Ostrom noted that by becoming detached from people and their everyday lives on the streets, Chicago’s police force lost an essential source of insider information, making it harder for them to do their work as effectively.”

My Twitter stream is currently littered with people trying to sell products and services to do with co-production. This brokerage into the NHS and social care, whilst potentially adding value, is also adding costs, typical of private markets. Because of the sheer volume of these products and services, it is difficult to discern those who are offering something useful or those who are selling snake oil (yet again).

I, as it happens, am co-designing a MSc in dementia, so that it speaks to the needs of those people currently living with dementia and carers. I am not doing so as a source of competitive advantage. I am not doing it so some part of NHS England 0r a CCG can buy it.

I’ve already been dead once in 2007 – but successfully resuscitated from my asystolic cardiac arrest. Please don’t let me die, this time, by #deathbyhashtag?

I do applaud people who are using co-producing, wisely, I should emphasise

Rant over

I’ll leave you with the wise words of Alison Cameron, speaking at the King’s Fund at their annual conference 2015, recently if I may?

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.