“Dementia friendly communities”: would a rose by any other name smell as sweet?

“What’s in a name? that which we call a rose
By any other name would smell as sweet”
Act II Scene 2 Romeo and Juliet William Shakespeare

Kate Swaffer has described how she felt her identity changed on receiving a diagnosis of dementia, a phenomenon which she called “prescribed disengagement”:

“Their families and partners are also  told they will have to give up work soon to become full time ’carers’.  Considering residential care facilities is also suggested.”

“All of this advice is well-meaning, but based on a lack of education, and myths about how people can live with dementia. This sets us all up to live a life without hope or any sense of a future, and destroys our sense of future well being; it can mean even the person with dementia behaves like a victim, and many times their care partner as a martyr.”

Labelling” as a sociological construct has been used to inform medical practice, since the 1960s in order to draw attention to the view that the experience of ‘being sick’ has both social as well as physical consequences.

Becker’s (1963) original work on the social basis of deviance argues that, ‘social groups create deviance by making the rules whose infraction constitutes deviance’.

Applying these ‘rules of deviance’ to individuals or groups means labelling them as ‘outsiders’. He goes on to argue that, ‘deviance is not a quality that lies in the behaviour itself, but in the interaction between the person who commits an act and those that respond to it’.

Goffman’s (1968) work is less concerned with the social process of labelling a particular action or pathological state as deviant, than with the stigmatising consequences of that process for an individual – what he referred to as ‘The management of everyday life’.

Various theories have led to a concept of a ‘stigma cycle’ [as depicted, for example, in Taylor and Field (2007)]:

stigma cycle

I remember when an able-bdied leftie went on a diatribe on a private thread concerning how “the disabled” had been treated. Being physically disabled, however, I really got a feeling of she was talking on behalf of “us” as one large homogeneous group. I felt offended.  I blocked her. I concede readily now this was a complete over-reaction.

But there’s no point being prissy or being overly-PC?

Indeed, it is said that the “dementia friendly communities” programme focuses on improving the inclusion and quality of life of people with dementia.

But using a label “dementia”, which in fairness is a commonly used term (and a medical diagnosis), runs the risk of eliminating diversity in a range of cognitive abilities.

The abbreviated Mini-Mental State Examination (1974) is the widely used ‘screening’ test for dementias, particularly those which load heavily on a memory component such as Alzheimer’s disease.

It is marked out of a maximum of 30, and a “low but normal” score is considered about 24, some feel.

And not all dementias are to do with memory problems. However, it might be more pragmatic, and potentially less stigmatic, to identify particular symptoms with which initiatives could be desired:

but one person’s problem with spatial navigation could be another person’s problem with memory… and so it goes on.

A problem here is that people who currently are ‘living well’ might resent ‘special treatment'; but the aim with equality and parity initiatives generally is to ensure that certain people are not disadvantaged and simply put on an equal footing.

In recent years, the Greek term ‘‘stigma’’ has emerged from this same risk paradigm to describe certain products, places, or technologies marked as undesirable and therefore shunned or avoided, often at high economic, social, and personal costs.

Traditionally,  both distrust and avoidance of risk have been found to be more common among disenfranchised groups.

However, most people would agree that a cynical use of the ‘dementia friendly communities’ as merely a kitemark to secure business advantage, even if it encourages corporates to participate, is suboptimal.

The neighbourhood-centered definition of community still makes partial sense, even in these days of global Internet connectivity.

According to Barry Wellman, professor of sociology and the director of NetLab at the University of Toronto, once people stop seeing the same villagers every day, their communities are not groups but social networks.

“Most members of a person’s community are not directly connected with each other, but are sparsely knit, specialized in role, varying in connectivity, and unbounded (like the Internet). Like the Internet, they are best characterized as a “network of networks”.”

Wellman further argues, “In such a world, social networking literacy is as vital as computer networking literacy for creating, sustaining, and using relationships, including friends of friends. ”

And the ‘networks’ angle plugs neatly into the policy drive for technological innovations for dementia.

Alzheimer’s Australia instead prefers the term “Dementia friendly societies”, which makes one wonder whether there’s an enormous important  difference between community and society.

“Dementia friendly societies has been defined in a number of different ways; … we will be using the definition proposed by Davis et al. – a “cohesive system of support that recognises the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way”. ”

And indeed social cohesiveness has come from a number of different converging arms of evidence.

It was in recognition of the importance of community participation that the 2000 NHS Plan described a new vision for the English NHS in which “the service user is centrally placed and is required to be consulted on all matters of policy and service development”

Furthermore, in order to move beyond the ‘tokenism’ levels of participation and begin to achieve genuine citizen power, it was discussed that “users” need to feel empowered and as such have the  ability and opportunity to shape the methods used for their involvement.

But inevitably issues about the name of this policy, while clearly well meant, revert to a discussion of stigma.

It is said that ‘a cure for dementia’ would be an important societal breakthrough as was the drive for a treatment for HIV/AIDS.

Stigma had stood out as a major barrier to HIV prevention and treatment services in Nigeria.A  fear of different types of stigma that stand as barriers to access.

But a key lesson here was that a number of different stigmas were described in addition to community stigma – for example, self stigma, familial stigma,  institutional stigma and  organisational stigma surfaced as issues that influence access.

Whilst much of this analysis is clearly an academic one, whether the term itself ‘dementia friendly communities’ itself exacerbates or diminishes division in a ‘them against us’ way is worthy of some scrutiny. For what it’s worth, ‘dementia awareness’ is difficult to argue against, as it is motherhood and apple pie stuff, but whether people have an accurate working knowledge of what the dementias are, and what can be done for people with dementia, as a result of this policy is an altogether different issue. I am not so convinced about this – nor who the exact beneficiaries have been.

Do you think the media tries actively to hide people living very well with early dementia?

Do you think the media tries actively to hide people living very well with early dementia?

Don’t shoot the messenger, but this is effectively a question which Norman McNamara, well known campaigner and a person living with dementia, asked on a public forum as follows.

Question

But when you think about it, you rarely get ‘success’ stories about or written by people living well with an early dementia.

This phenomenon, to be fair, might be part of a wider picture, of the media tending to focus on bad news stories, or “shocks”.

Not to generalise, but often irresponsible journalists have tended to sensationalise news stories anyway, “not letting facts get in the way of a good story”.

It is thought that there are currently about 900,000 people currently living with dementia in the UK. Some of them are living well by the law of averages?

But the question asked poses wider issues of more potential concern. Does the public need to be ‘scared’ in order to donate to a cause?

Might it be effective to use the words “bomb”, “timebomb” and “flood” to shock people into action through donation to a dementia charity?

The focus of efforts can of course be the elusive “cure”, with proponents arguing that cures for dementia have been denied resource monies compared to, for example, the cancer charities.

It can also be argued that there is a genuine shock in the story, that it would be quite inappropriate to sanitise the dementia narrative. For example, almost every week there’s a new revelation about cuts in social care.

As it happens, I had been thinking about a similar issue: on the nature of the term “dementia friendly communities”.

A friend of mine, whose mother lives with dementia, said to me: “Whenever I see that a café is ‘dementia friendly’, I get immediately reassured.”

On the other hand, another close friend of mine, living with dementia, said: “I find the concept of dementia friendly communities intensely patronising.”

When I asked her why, she said it is simply inappropriate to think of people with dementia as one huge group as they have differing needs and abilities.

Maybe the term ‘community’ is meant to reflect this diversity though?

I am physically disabled, and I have often thought about whether I would welcome a national policy called “disabled friendly communities”.

In a way, giving a whole group of people a label negates personhood and individual identity. On the other hand, criticism of the term might be overly politically correct, and one should be intuitively positive about any initiative which is inclusive for people in society?

The late Tony Benn used to explain his views on equality in terms of not forcing people to be equal. Benn argued that a more useful way to conceptualise the situation was to think of removing obstacles that made people more unequal.

But I feel the question that Norman poses is an appropriate one. If we are to embrace truly the notion of a ‘dementia friendly communities’, we need to embrace the idea too that some people with dementia are inspirational and can be leaders themselves.

The notion of presenting people living well with dementia is therefore a very important one, and to omit them from the narrative would be a very dangerous pursuit.

That is, it would be if such a pursuit were deliberate: presumption of innocence, and all that.

The BBC’s current political editor, Nick Robinson, calls this ‘bias by omission’, and, whilst we share rather different political perspectives perhaps, on this I feel Norman and Nick are together right.

Thanks to Gill (@whoseshoes) for capturing the happiness of friends at my book launch for ‘Living well with dementia’

I don’t go to “trade fairs” where people display their latest ‘products’ for dementia. I am an outsider, and very happy to be so so.
But I do feel my book is having an impact slowly with the right people.

For example:

and

These are just some of the messages in the ‘little black book’ I was given at my book launch for ‘Living well with dementia’ (details here). Ones not shown have not been excluded out of any malice. I am hugely proud of people who kindly made it to Camden to celebrate my book on February 15th 2014. I am of course hugely indebted to Gill Phillips (@WhoseShoes) for presenting me with this ‘little black book’, which I promise to cherish forever. #KoalaHugs

And the last word is left to #KoalaHugs:

A proposed use of @theRSA’s “Steer” for a behavioural change for dementia friendly communities

I am about to present to you a proposal for a change in behaviour from ‘dementia friendly communities’ to putting the boot on the other foot, persons with early dementia leading communities with their beliefs, concerns and expectations. I would be enormously grateful for any feedback on my ideas, which I’m deadly serious about it.

For example:

Many thanks already for these other kind remarks on Twitter:

Anyway here it is.

Introduction

It’s virtually impossible for anyone to lead on “dementia friendly communities” in a charismatic way because of the lack of clear vision so far in what a dementia friendly community is. And yet there are clearly structural fault lines in which this debate has been approached by a number of influential parties. At worst, the policy has been engulfed by commercial considerations of people seeking to make an ‘economic case’, finding clear routes by which becoming ‘dementia friendly’ can generate business or profit. The policy fundamentally has huge flaw in it currently. It treats people living with dementia as one big mass of people, with no consideration of the hundred or so different types of dementia.

Consequently, absolutely no effort is made as to considering what people with dementia can do, rather than what they can’t do. For the purposes of my leaflet, I propose further work using the foundations laid by the RSA’s “Social Brain” project in light of the #powertocreate initiatives at the heart of the RSA’s philosophy. I feel that a powerful breakthrough will be made if we can try to extend the woefully small body of work on self-s of thinking and Self in the neuroscientific literature. The current constructs of ‘dementia friendly communities’ are so bland that they might work equally well for ‘cancer friendly communities’. I also feel that if we try to allow people with early dementia a chance to harness abilities rather than disabilities, this might produce a useful entry route for collective decision making by people with early dementia.

A problem with disengagement

Ambitious, but quite pragmatic about this promise, the RSA is an organisation recently committed to the pursuit of what it called a “21st century enlightenment”. Founded in 1754 during the actual historical Enlightenment, its purpose – realised through its projects, public lectures and Fellowship activity – is to identify and release untapped human potential “for the common good” and in so doing foster a society in which citizens are more capable of acting confidently, altruistically and collaboratively.

The ultimate question for the RSA’s “Social Brain project” is whether a change in how we think of ourselves can lead to a change in our culture overall, which in turn can lead to effective responses to our shared problems. I am going to take one ‘problem’ how we encourage a sense of community in persons living well with early dementia. In the original ‘Enlightenment’, knowledge about how the world functions led to changes in the way human beings conceived of themselves. Most notably, the success of scientific knowledge led to people beginning to view themselves as not governed by divine powers, but as capable of shaping their own destinies through the power of reason. There has been a massive explosion in our understanding of the brain, and indeed the dementias. The Social Brain project is interested in how new knowledge about brains and behaviour  might lead to a similarly powerful invigoration of people’s ability to shape their own destinies.

Take, for example, the life and work of Kate Swaffer regarding dementia.

Kate has clearly taken it in her own hands to shape her own destiny, campaigning on dementia. She lives with a dementia in Australia herself, and refuses to be ‘talked at’ or ‘talked about’. Her blog produces insights into living with dementia which should be compulsory reading for medical professionals who have little experience in personhood.

This is an extract from Kate’s blog.

 Following a diagnosis of dementia, most people are told to go home, give up work, in my case, give up study, and put all the planning in place for their demise such as their wills.

Their families and partners are also told they will have to give up work soon to become full time ’carers’.  Considering residential care facilities is also suggested.

All of this advice is well-meaning, but based on a lack of education, and myths about how people can live with dementia. This sets us all up to live a life without hope or any sense of a future, and destroys our sense of future well being; it can mean even the person with dementia behaves like a victim, and many times their care partner as a martyr.

Many of you know I have labelled this “Prescribed Disengagement”, and it is clear from the numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia.

My suggestion to everyone who has been diagnosed with dementia and who has done what the doctors have prescribed, is to ignore their advice, and re-invest in life.

This ‘prescribed disengagement’ can be further exacerbated by any ‘dementia friendly communities’ where the key outcome is a badge or a sticker in the window, rather than ascertaining the beliefs, concerns or expectations of persons living with one of the dementias.

A growing democratic deficit with persons with early dementia?

Dementia describes different brain conditions that trigger a loss of brain function. These are all usually progressive and eventually severe. Alzheimer’s disease is the most common type of dementia, affecting 62 percent of those diagnosed. Other types of dementia include; vascular dementia affecting 17 percent of those diagnosed, mixed dementia affecting 10 percent of those diagnosed. Symptoms of dementia include memory loss, confusion and problems with speech and understanding.

What goes wrong in thinking, and the underlying problems in the brain, is now reasonably well established for the commonest form of dementia at least.

A good review is provided by Peña-Casanova and colleagues from 2012. The progression of brain pathology determines the cognitive expression of the disease. Thus, in accordance with the initial involvement of a part of the brain close to the ear medial temporal lobe, thinking changes in Alzheimer’s Disease typically start with specific difficulties in encoding and storage of new information. There is therefore quite a lot which persons with Alzheimer’s Disease can do, not of course meaning to dismiss in any way such problems with new information.  A similar argument can be made for other types of dementia such as posterior cortical atrophy or progressive primary aphasia.

That persons currently living with an early dementia are not supposed to be the prime recipients of the mass of news stories about dementia is witnessed in the use of the words ‘timebomb’, ‘flood’ or ‘tide’ by influential politicians. A democratic deficit (or democracy deficit) occurs when ostensibly democratic organisations or institutions (particularly governments) fall short of fulfilling the principles of democracy in their practices or operation where representative and linked parliamentary integrity becomes widely discussed. It’s said that the phrase democratic deficit is cited as first being used by the Young European Federalists in their Manifesto in 1977, which was drafted by Richard Corbett. The phrase was also used by influential thinker Prof. David Marquand in 1979, referring to the then European Economic Community, the forerunner of the European Union.

As Dr. Jonathan Rowson puts it at the beginning of his report with Iain McGilchrist “Divided brain, divided world”, we are fundamentally social by nature:

“The notion that we are rational individuals who respond to information by making decisions consciously, consistently and independently is, at best, a very partial account of who we are. A wide body of scientific knowledge is now telling us what many have long intuitively sensed – humans are a fundamentally social species, formed through and for social interaction, and most of our behaviour is habitual.”

There’s little doubt over the broad definition of a “dementia-friendly community” as one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them. However, there is little attempt to demarcate the limits of that community, possibly unnecessary when you consider that multinational corporations are capable of using the term globally?

A lack of a wish to put people with early dementia in the driving seat in dementia friendly communities is indeed maintained by persistent references by think tanks to dementia as a “disease”, whereas policy has been firmly been moving towards considering people as individuals.

The aspiration that one might shape communities around the needs and aspirations of people living with dementia “alongside the views of their carers” tends to assume somewhat that persons with dementia and carers will have similar views and attitudes. Each community will have its own diverse populations and focus must include understanding demographic variation, the needs of people with dementia from seldom heard communities, and the impact of the geography, e.g. rural versus urban locations.

A lot of media attention has latterly gone into the notion of respectful and responsive businesses and services. An aspiration to promote awareness of dementia in all shops, businesses and services so all staff demonstrate understanding and know how to recognise symptoms is fine, provided that such ‘badges of honour’ are not consigned to leaflets which people make available passively.

If one is not careful, this policy can see an insidious strand of ‘Nudge’ invoking a nasty whiff of corporate bias in influencing consumer behaviour. For example, a member of public might start making shopping choices according to those people who haven’t accorded themselves the label of being ‘dementia friendly’. Such arrival of consumer choices by elimination is known as ‘elimination by aspects’, a highly influential theory of economist Anne Tversky whose work contributed to the Nobel Prize in Economics in 2002. Such an approach reinforces power to a top down Élite, and not putting persons with dementia at the heart of communities.

Dementia friendly communities cannot simply be about ‘Nudge’

There are some nudges that appear to actively engage individuals. For example, where choices are contextualised as public commitments, changes in behaviour tend to be more pronounced. This looks like active engagement whereby a person thinks for herself in order to change her own behaviour. But this change in behaviour is actually driven by various emotions that are triggered in the automatic system; emotional responses such as wanting to maintain one’s reputation, avoiding the shame of not sticking to one’s commitment, and wanting to appear consistent (for one’s behaviour to align with what one has said). Reputation has previously been identified by Professor Michael Porter at Harvard as a key factor through which corporates wish to prove their citizenship in ‘corporate social responsibility’.

However, it is commonly argued that “the Nudge approach” can only work on very simple behaviours: ones where the automatic system can be guided without any input from the controlled system. Very few behaviours are indeed simple enough to be influenced in this manner.

Libertarians, such as New York University Professor Mario Rizzo and California State University Northridge Professor Glen Whitman, have publicly expressed heir political reservations as concerns about nudges being “vulnerable” to becoming tools that support new, straightforwardly paternalist policies. They specifically warn that ‘nudge projects’ could grow expansively, absorb public resources, and primarily further the ends that choice architects (notably, government bureaucrats) deem valuable. At worst, this is what has happened with the mass roll-out of the corporate involvement of dementia friendly communities.

A desire by persons with early dementia to be engaged in dementia friendly communities

 Norman McNamara, living with a type of dementia known as diffuse Lewy body disease, has campaigned tirelessly in raising awareness of dementia, and this work does not merit any criticism at all. I know several people who’ve drawn enormous benefit from the fact that shops are showing the ‘Purple Angel’ sign in their shop window, offering genuine reassurance. But a problem is a lack of interest by some funding bodies and politicians in giving persons with early dementia up to date information about the neuroscience and research in dementia, and encouraging feedback on such information. Involving people with early dementia is not as impressive as persons with dementia making decisions to fulfil their own plans with appropriate support. Take for example Chris Roberts’ desire to set up a café.

“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! 
no one leaves till they are collected, could it be so easy, there are 1000′s of empty buildings in every major city in the uk .”

When I spoke to Chris over the phone over this, Chris reported to me that it’ll always be the case that some persons with dementia do not wish to become particularly involved in the democratic process. This of course is not particularly surprising, given that it is estimated that up to a million people will not bother voting in the UK general election to be held on May 7th 2015. Significantly, Chris is less keen himself personally to be a recipient of funding or grants, as he appreciates that involving a financial backer could immediately make him accountable to another party, diverting energy from the real purpose of this project – as community action.

Real engagement is nonetheless possible. Marian and Shaun Naidoo have been commissioned by the combined commissioning group to undertake “Connected Compassionate Communities” in Birmingham and Solihull. The overarching aim of this action research project is to improve the lives of frail older people and the people who care for them.

In the preliminary stages of this project, feedback from all stakeholders who have an interest in improving a care pathway for dementia. Marian and Shaun concluded the following:

“there is no doubt that many people have a positive experience of diagnosis and do live well with dementia.  Conversations with people within this process identify concerns with regard to lack of awareness and knowledge at every stage of the pathway. This was perceived across all sectors. Many people experienced delays in diagnosis, lack of connected support and stigma. The scope for developing better services through trust and greater engagement remains.”

Asking the right questions – how much do we really know about ‘self awareness’ in persons with early dementia?

According to Ballenger (2006), a major problem lies in the very character of biomedicine, in its inability to deal adequately with uncertainty. The efforts of the medical professions have been hampered through a range of different perspectives on the nature of dementia as a ‘disease process’, the lack of an effective treatment for symptoms or preventing further progress of the disease, and the ambiguous consequences of receiving a diagnosis as far as support from the medics are concerned. Social stigma further complicates this struggle, as individuals diagnosed with dementia can often find themselves disempowered, disassociated, and excluded from social networks.

Nonetheless, despite the tremendous loss of identity that occurs over the course of a dementing illness, it is also established that a sense of Self can survive, as demonstrated by the uniqueness of each person living with a dementia (Dworkin, 1986).

In a study of individuals diagnosed with early stage Alzheimer’s disease, the common failure to recognise the individual’s continuing awareness of Self was found to lead to low expectations for therapeutic intervention, to interactions that are limited to the task at hand (such as activities of daily living). This cumulatively led to less than optimal experiences for a given level of dementia.

Clare (2003) has identified a range of responses to changes in memory function, from ‘‘self maintaining,’’ in which these persons work to maintain existing identities, to ‘‘self-adjusting,’’ in which individuals develop a new sense of self by incorporating changes into their new identity. Saunders (1998) found that “dementia patients still perform a great deal of identity construction and maintenance (p. 85).” According to Saunders, these accounts demonstrate a fluctuation in self-perception by individuals with dementia as they cope with the memory changes they experience. But clearly one should never try to inflict information about dementia to persons with dementia, if there is any risk that this might cause distress or offends autonomy in persons living with early dementia. But then it becomes a ‘catch 22’ – you need to raise awareness due to the stigma to do with dementia, but the stigma or genuine fear causes persons with dementia and caregivers wishing to engage with the science of the condition even remotely.

In this regard, Portacolone and colleagues in the journal “Aging and Mental Health” in an article entitled “Time to reinvent the science of dementia: the need for care and social integration” provide extremely useful insights.

“To rethink its basic orientation, the recent biomedical trend in dementia needs to mature out of its stage of confidence. Ballenger suggested a more self-reflective and explicitly ambivalent biomedicine – an ‘aging’ biomedicine willing to open to other fields and disciplines concerned with dementia. Along those lines, other speakers suggested we rethink the biomedical paradigm of healing and replace it with a holistic paradigm of care, empathy, as well as cultural and social integration. This reframing can be facilitated through a dialogue between biomedicine and bioethics, public health, social sciences, and the medical humanities, as illustrated by the richness and depth of the discussions generated at the workshop. To assist this reframing, we begin with a reflection on the main elements of the struggle that is compelling biomedicine to rethink its original orientation: the unsettled definition of dementia comes first, followed by the ambiguous benefits of the diagnosis, the ethical conflicts on consent and clinical trials, and finally the need to give more attention to the perspective of the person with dementia. The conclusion discusses the opportunities of a new holistic paradigm founded by a dialogue between biomedicine and public health, social sciences, medical humanities, and bioethics.”

And it could be we’re all looking at different parts of ‘dementia friendly communities’ from different viewpoints.

In the story of “The Elephant in the Dark”, the medieval Farsi-speaking poet Rumi masterfully portrayed the limitations places on beliefs by noisy sensory perception (Tourage, 2007). Late one evening, an Indian circus arrived at a village. The more curious villagers sneaked into the elephant’s stable. In absolute darkness, they made observations by touching the elephant’s body When they returned to their families, their accounts, constrained by their limited sensory experiences, gave widely divergent images of the elephant.

Rumi concluded that “light” —an external source of objective reference—is necessary for formation of reliable beliefs about the external world. Without objective reference, beliefs will be purely subjective. It is an impossible task, I feel, to look at ‘dementia friendly communities’ for persons living with an early dementia, with putting the views of those people at the heart of the decision-making process.

Public engagement with persons with dementia does not necessarily need to involve the traditional media, but it probably helps!

We currently live in a time when the scientific establishment, the government andfunding bodies, are voicing concern about the relationship between science and the public. The call is for improvements in this.

It’s interesting to try to identify where the ‘barriers to communication’ are. The media’s role in the public understanding of science has been much criticised by scientists, but it could be the case that bad dancers are in fact blaming the floor. But likewise it is perfectly possible that people ‘controlling the message’, i.e. journalists, have exerted a disproportionate top down control on what the message is. I suspect that this is precisely what has happened in the case of ‘dementia friendly communities’, where the mainstream media are used to dealing with well resourced communications departments of large charities. Nonetheless, blogs and microblogs such as Twitter have been invaluable in democratising the message.

Examinations of the professional and social forces at work reveal a high degree of collaboration and mutual reliance between scientists and journalists, even though the differences between journalistic and scientific practices can sometimes lead to unbearable disputes. The media do provide the forum in which the relationship between science and the public is pursued, and it is in this forum that the public make moral judgments about science. For example, there has recently be a tsunami of opinion pieces as to whether you’d like to have a blood test which could predict with certain accuracy your chances of developing a dementia (even though the original paper in Nature Medicine was about something rather different.)

However, despite the media’s activity in the communication of science, they have no brief or responsibility for improving the public understanding of science, and in some cases are not particularly well suited to the task. Science writers rarely ‘bend’ articles to get space in their paper, but they may emphasise aspects or use language that gives scientists the creeps. For example, the number of ‘breakthroughs which stop dementia in its tracks’ have recently been endless. These articles can often be irrelevant to most people currently living with early dementia. And yet persons with early dementia would benefit enormously from accurate information about the science of dementia?

In my opinion, there is a serious democratic deficit which could emerge between persons with dementia and researchers. I’ve heard first-hand of medical doctors not explaining the diagnosis of dementia to their patients, instead preferring to give them an ‘information pack’. Likewise, academic researchers seem all too keen to sign up persons with dementia to various research studies, without even writing to them stating the findings from the very same studies.

Human behaviour, to state the obvious, is going to be at heart of engaging any citizen. A strand of modern thinking in “citizen-centric politics” can be traced to political thinking in the wake of the Second World War—notably Hannah Arendt’s “The Human Condition” (1958). Arendt pursued a strong version of political engagement which she considered to be a profound cultural achievement rather than something emerging naturally from human nature. She regarded “citizenship” as a distinctive and consciously adopted role, played out by citizens interacting and debating in a discrete public realm in which everything “can be seen and heard by everybody and has the widest possible publicity”. These days, a public interactive website would suit that function well. It could serve as a platform with some immediacy in providing learning resources explaining in a suitable way for people with dementia with neurocognitive needs what the common dementias are, and how they typically affect thinking. If this were coupled with a blog or Twitter, the end result of a social movement could be very powerful indeed.

The concept of building a ‘communicative power’ for persons with early dementia

Some argue that ‘communicative power’ lies at the heart of the communication model of the political process. Habermas borrows the concept of communicative power from Hannah Arendt, while somewhat reformulating it. Arendt emphasises that power is always something exercised in common, not by an individual:  power corresponds to the human ability not just to act but to act in concert.

During the last few decades of the 20th century, the debate on citizens’ participation in their own governance has tended to move away from the Arendtian constraints towards exploring and applying more fluid and nuanced approaches. The German critical theorist Jürgen Habermas proved a seminal influence on the debate, arguing for what he termed ‘communicative rationality’, whereby competent and knowledgeable citizens engage with one another in good faith, and through the giving (or assuming) of reasons arrive at a shared understanding about a situation.

“insofar as the democratic process, as it is institutionally organised and conducted, warrants the presumption that outcomes are reasonable products of a sufficiently inclusive deliberative process”

How can we bring about a sustainable authentic ‘behavioural change’ in allowing persons with dementia to lead in dementia friendly communities?

Nudge has clearly had its limitations, which is why the RSA has developed “Steer” through the “Social Brain” project. Drawing on a range of research from several disciplines, Steer enables people to appraise situations and make judgments about when they should trust, or be wary of, their gut instincts, rational convictions or environmental influences. The full rationale of the RSA’s articulation of “Steer” is provided in Grist (2010).

It is always extremely exciting when there is original evidence of behavioural change taking the debate forward. For example, the RSA recently a conducted a study entitled “Cabbies, Costs and Climate Change” (2011). The recommendations arising from the project as a whole are outlined in detail in their final report. They include making habitual behaviour (rather than just behaviour) the focus of interventions, making fuel efficiency a pass/fail criterion on the driving test, changing driving habitats to encourage fuel efficiency, incentivising taxi drivers to become ambassadors for fuel efficiency, providing more salient feedback, and making taxis greener.

This is an example of a beneficial behavioural change. Could such a behavioural change be effected for persons living with an early dementia?

It has previously been reported that people living with dementia face psychological and emotional barriers to being able to do more in their community, alongside physical issues. These common barriers are said to include a lack of confidence, being worried about getting lost, mobility issues and physical health issues, and not wanting to be a burden to others. It is therefore odd that there has been given such scant regard to electronic dementia-friendly communities – indeed communities run mainly by and for persons with early dementia.

For example, in the voluminous Alzheimer’s Society report   “Building dementia friendly communities: a priority for everyone”, the definition of community is strikingly narrow.

“The term ‘community’, within this report, relates to the area in which people live, including the shops and cafes they visit, the places they enjoy for recreation or leisure and the wider public spaces that surround them. It can be described as the various interfaces and interactions that a person with dementia and their carers require in their locality in order to live well.”

However, the definition provided by the Joseph Rowntree Foundation in its seminal report “Creating a dementia friendly York” is considerably wider, and includes the term ‘social networks’.

“A dementia-friendly community has been described by people with dementia in this project and in others to which we have contributed as one that enables them to:

• find their way around and feel safe in their locality, community or city

• access the local facilities that they are used to (such as banks, shops,

cafés, cinemas and post offices, as well as health and social care services)

• maintain the social networks that make them feel still part of their community.”

The tone of their report is altogether different. Instead of involving people with dementia, the Joseph Rowntree Foundation talk about people with dementia “at the heart of the process”. They frame the components of their dementia friendly communities using ‘The Four Cornerstones Model’ construct.

 “With the voices of people at the heart of the process, we believe that communities need to consider four ‘cornerstones’ to test the extent of their dementia friendliness.

These are:

Place – how do the physical environment, housing, neighbourhood and transport support people with dementia?

People – how do carers, families, friends, neighbours, health and social care professionals (especially GPs) and the wider community respond to and support people with dementia?

Resources – are there sufficient services and facilities for people with dementia and are these appropriate to their needs and supportive of their capabilities? How well can people use the ordinary resources of the community?

Networks – do those who support people with dementia communicate, collaborate and plan together sufficiently well to provide the best support and to use people’s own ‘assets’ well?

Collective endeavours need coordination and mutual understanding, which often takes time, effort, and experience to establish.

And yet collective decision-making is central to the wellbeing  communities, towns, and city neighbourhoods. This painstaking and often divisive civic process can be especially difficult for the many towns, counties and rural areas that have little or no coverage in print media, such as a local newspaper. There is little reason to believe to think collective decision-making would fail in a supportive electronic environment such as a Wiki, for persons with early dementia.

The power of the internet and solidarity

Imagine life without the technologies many rely on every day: the computer, smartphone, #ipad, or similar. In many western cultures, we have grown so accustomed to the use of these tools for communication, discourse, and social activities that it is hard to envision us without them. By collaborating in social networks, computer users around the globe now contribute to a new way of learning. This learning allows reshaping of knowledge, information, and culture, and informs how we create and share content “between individuals, groups, and societies”.

Solidarity is a key aspect of such collaborative networks.

As the RSA point out in the report “Beyond the Big Society – Psychological foundations of active citizenship”, ‘solidarity’ is a hugely complex notion, and there is a large literature on the subject. However, the authors conclude that  it is broadly about integration, about the extent to which we feel we are on ‘common ground’ with and have a sense of mutual commitment with the people with whom we share space, time and resources.

As Sarah Ammed puts it:

 “Solidarity does not assume that our struggles are the same struggles, or that our pain is the same pain, or that our hope is for the same future. Solidarity involves commitment, and work, as well as the recognition that even if we do not have the same feelings, or the same lives, or the same bodies, we do live on common ground.  While statistics on community cohesion (social solidarity between different cultural groups) in the UK suggest some progress in developing solidarity in our most culturally and ethnically diverse places, this progress occurred in conjunction with more than a decade of strong and sustained economic growth, low unemployment and massive investment in public services. Community cohesion could easily become a hot political and social issue as the cuts to public spending begin to bite, and competition for services and resources intensifies. For the Big Society to flourish, policymakers will need to work very hard to better understand and help develop new ways of strengthening social solidarity, particularly in our most culturally and ethnically diverse communities, where levels of social solidarity tend to be lowest and levels of multiple deprivation and social exclusion tend to be highest.”

The need for further exploratory research for the implementation of Steer: persons with early dementia

There is clearly a need to look at how the principles of ‘Steer’ could facilitate collective decision making in persons with early dementia. As part of the exploratory research, a structure as successfully implemented in research for police officers as reported in 2012 could be utilised.

Persons with early dementia will be able to produce a range of opinions as to work best for them, and it is possible that some views might fractionate according to a precise cognitive diagnosis. But that’s where the medicalisation ends. The impetus behind asking persons with dementia what they feel in relation to the world around them is a necessarily unique experience.

We could begin the process if people with early dementia decided to engage with a website providing information about dementia pitched suitably at them, making reasonable adjustments for their abilities. We could then begin to explore whether and how the principle of RSA’s “Steer approach” to behaviour might be applied in communities for people living with an early dementia.

We could then invite a larger number of people with early dementia to participate in a series of two face-face deliberative workshops. The intention was to explore Steer principles with participants, who would then experiment with applying them, and keeping diaries of their experiences, before sharing and examining these in a second workshop. This way, we could produce a rich corpus of data, which gave considerable insight into the challenges facing police and the ways in which RSA’s engaged approach to behaviour change might be able to help them better rise to these challenges.

Persons with early dementia are an important section of the public with whom we should engage over the science of dementia

It’s clearly critical for us as a society to evaluate critically, question and debate in a focused way the key issues in science and society. A large number of people in the public live successfully with an early dementia. Finding ways to illustrate the Steer principles in relation to dementia, including film-making, theatre productions, exhibitions, discussion and policy-influencing events and multimedia, could be hugely exciting.

As well as a societal and moral drive for the need to discuss the science of dementia with people with dementia, there is also potentially a legal imperative.

A “mental health condition” is considered a disability if it has a long-term effect on your normal day-to-day activity. This is defined under the Equality Act 2010. Your condition is ‘long term’ if it lasts, or is likely to last, 12 months, and ‘normal day-to-day activity’ is defined as something you do regularly in a normal day. There are many different types of mental health condition which can lead to a disability, legally; and dementia can be one of them.

There is no justification for people with dementia to be treated in an inferior way to people without, hence the purpose of the discrimination legislation in England and Wales. It’s important to appreciate that for the greatest part of our history, the political, social and economic life of most societies were controlled by a single nobility “held in place.” Those outside the elite who questioned this monopoly on power would suffer various unpleasant penalties. On the other hand, creativity is essential to change our society for the better. And, in fact, there is a large body of evidence to highlight that persons with dementia can be incredibly creative, But, if we, as a society, only tap into an elitist pool of creativity then we impede our own ability to tackle the myriad of problems we face. Politics, sadly, is the very opposite of creativity. Politics, as it is currently conceived, is inherently elitist, and corporate-like charities may have agendas with politicians which are consequently at odds with the persons with dementia they appear to seek to involve.

Conclusion: a ‘power to create’ something unique

In relation to the strong ethos of ‘power to create’, which many argue William Shipley, founder of the RSA, would have signed up to, Anthony Painter covers this beautifully in his blogpost “We need to talk about power” from 8 January 2014:

“Morozov argues that the nature of political community matters. The institutional structure matters if you want the power to create to be really dispersed rather than concentrated. That’s why we need to talk about power, its form, the ethos that seeks to deploy it, and its purpose: our purpose as individuals who wish, need, and should create.”

I feel passionately a power to create a medium in which persons with early dementia can think about their own Self, based on a genuine engagement with individuals over the current neuroscience of dementia, will be a critical start. I think, armed with this knowledge, people can be armed with the tools as to how best to go about making decisions.

This is as much as giving persons with dementia “a voice”, in as much as befriending them in large numbers important though that is. The ‘communicative power’ of an electronic website, providing resources on the neuroscience of dementia and tools for people with dementia to engage with ‘Steer’, I think could bring about an important behavioural change in not just ‘involving’ people with early dementia – but also making sure they ultimately lead in their own communities.

References

Alzheimer’s Society (2013) Building dementia friendly communities: a priority for everyone.

Arendt,  H. (1958) The Human Condition, University of Chicago Press: Illinois, p. 50.

Ballenger, J.F. (2006) Self, senility, and Alzheimer’s disease in modern America: A history. Baltimore, MD: Johns Hopkins University Press.

Clare, L. (2003) Managing threats to self: Awareness in early stage Alzheimer’s disease, Social Science & Medicine, 57, pp. 1017–1029.

Dworkin, R. (1986). Autonomy and the demented self, The Milbank Quarterly, 64(2), pp. 4–16.

Grist, M. (2010) Steer: Mastering our Behaviour through Instinct, Environment and Reason, RSA: London.

Habermas, J.  (1984)  (translated McCarthy, T.), The Theory of Communicative Action, Beacon Press: Boston, 1984.

Joseph Rowntree Foundation (2012)  Creating a dementia-friendly York. Accessible at: http://www.jrf.org.uk/sites/files/jrf/dementia-communities-york-full.pdf (viewed 15 March 2014).

Portacolone, E., Berridge C., Johnson, K, Schicktanz, S. (2014) Time to reinvent the science of dementia: the need for care and social integration, Aging Ment Health, 18(3), pp. 269-75.

London Arts and Health Forum. (2014) Connected Compassionate Communities: An Action Research Project, West Midlands – deadline 13 July. Accessible at: http://www.lahf.org.uk/connected-compassionate-communities-action-research-project-west-midlands-deadline-13-july  (viewed 15 March 2014).

Painter, P. (2014) Blogpost: “We need to talk about power” Accessible at: http://www.rsablogs.org.uk/2014/enterprise/talk-power/  (viewed 15 March 2014).

Peña-Casanova J1, Sánchez-Benavides G, de Sola S, Manero-Borrás RM, Casals-Coll M. (2012) Neuropsychology of Alzheimer’s disease. Arch Med Res, 43(8), pp. 686-93.

Roberts, C. (2014) Blogpost: “Immediate day care rant”vAccessible at: http://mason4233.wordpress.com/2014/03/08/intermediate-day-care-rant/ (viewed 15 March 2014).

Rowson, J., Lindley, E. (2012) RSA Projects: reflexive coppers: adaptive challenges in policing, RSA: London.

Rowson, J, McGilchrist, I. (2013) RSA Projects: Divided brain, divided world, RSA: London.

Rowson, J, Young, J.  (2011) RSA Projects: Cabbies Costs and Climate Change, RSA: London.

Rowson, J, Mezey, M.K., Dellot, B. (2012) RSA Projects: Beyond the Big Society – Psychological foundations of active citizenship, RSA: London.

Saunders, P. A. (1998) ‘‘My brain’s on strike’’: the construction of identity through memory accounts by dementia patients, Research on Aging, 20(1), 65–90.

Swaffer, K. (2014) Re-investing in life after a diagnosis of dementia. Accessible at: http://kateswaffer.com/2014/01/20/re-investing-in-life-after-a-diagnosis-of-dementia/ (viewed 15 March 2014).

Thaler, Richard H.; Sunstein, Cass R. (2008). Nudge: Improving Decisions about Health, Wealth, and Happiness, Yale University Press.

Tourage, M. (2007). Rumi and the hermeneutics of eroticism. Leiden, The Netherlands: BRILL. doi:10.1163/ej.9789004163539.i-260.

UK Government. When a mental health condition becomes a disability Accessible at: https://www.gov.uk/when-mental-health-condition-becomes-disability (viewed 15 March 2014).

Wellcome Trust website. Public engagement Accessible at: http://www.wellcome.ac.uk/funding/public-engagement/ (viewed 15 March 2014).

An analysis of 75 English language web articles on the G8 dementia summit

Background

Experience has suggested that academic scientists can be as ‘guilty’ as the popular press in generating a ‘moral panic’ causing mass anxiety and hysteria. Take for example the media reporting of the new variant Creuztfeld-Jacob disease, a very rare yet important cause of dementia (Fitzpatrick, 1996).

How dementia is represented in the media is a good surrogate market of how the issue can be represented in certain segments of the culture of a society (Zeilig, 2014).

According to George, Whitehouse and Ballenger (2011), the concept of dementia, a term which they attribute to Celsus in the first century A.D. — has long carried “social implications for those so diagnosed and has been associated with reduced civilian and legal competence, as well as with entitlement to support and protection.

A range of emotionally charged metaphors about dementia pervades the popular imagination, and these are found in newspaper accounts, political speeches, and in both documentary and feature films. The ‘G8 dementia’ summit allowed many of these recurrent motifs to resurface unchallenged.

I’ve been intrigued how the G8 Dementia Summit was covered in the English-speaking media on the web. So I did a Google search for “G8 dementia”, on the UK Google site. It only came up with languages in English article, and I included the top 75 search results.

I excluded some search results. I excluded webpages consisting of only videos. Flickr photos or Pinterest boards. I decided to exclude articles less than 100 words long.

Aim

The aim of this piece of work was to complete a preliminary exploration of how the #G8dementia summit was reported on the internet in the English language.

The literature in this field is very small, and no study to my knowledge has ever been undertaken for the actual reporting of the G8 dementia summit which was unprecedented.

Methods

For the text analysis, done online using this tool, I excluded the author names, titles, location of authorship of the article (e.g. London). also excluded the endings, invariably, “Read more” “You may also like”, “You can read more about” and list of other ‘links’ to look at. I excluded duplicates. Finally, one article which was largely a compilation of tweets was excluded.

Results

Unsurprisingly, the word “dementia”  featured 955 times, but encouragingly “people” featured 280 times. I found this quite gratifying as I have just published a book on the rôle of the person and the environment for living well with dementia – though the vast majority of articles did not have wellbeing as their main thrust.

Wordie

I think the problem in English policy is revealed in the finding that “research” appears 334 times, and yet “wellbeing” is there fewer than eight times. The facts that “data” is used thirty times, with “collaboration” 28 times, hint at the overall drive towards data sharing for the development of cross-country trials and personalised medicine.

There seems to be a greater need for “funding” somewhere, a word used 66 times. There’s clearly an “international” focus, a word used 103 times.

The word “carers” was only used thirty times – a bit of a knee in the groin for the caring community?

The term “social care” is used 14 times across the 75 articles, but this is dwarfed by the use of the term “innovation” used 37 times. “Innovation” is of course a key meme of Big Pharma, as demonstrated by this infographic by Eli Lilly, a prominent company in dementia neuropharmacology.

TTIP

The ideological bias towards the medical model for dementia is reflected in the frequency of the word “disease” or “diseases”, totalling 203; “treatment” or “treatments”, totalling 91; and “cure” or “cures”, totalling 72.

There’s clearly a bias towards Alzheimer’s disease, in that “Alzheimer” was used 145 times, with the word “vascular” used only six times. Strikingly, no other forms of dementia were mentioned. There are probably about a hundred known forms of diagnoses comprising the dementias, including some very common ones such as “frontotemporal” or “diffuse Lewy Body”.

Various authors, including Kate Swaffer who lives with a dementia herself, have often remarked on this bias known in the literature as “Alzheimerisation” (Swaffer, 2012).

“Cameron” is mentioned 60 times, and “Hunt” is mentioned 24 times. “Hughes”, as in Jeremy Hughes, CEO of the Alzheimer’s Society, is only mentioned 5 times.

It’s also interesting to see which other conditions are mentioned alongside dementia in these 75 articles. Only three were, in fact: these are “cancer” (45 times), HIV (25 times) and AIDS (29 times); treating HIV and AIDS as distinct, which is of course is not necessary to do, and there may have been no intention on the part of the journalists to use these words specifically in their narratives.

Thankfully, the usual dramatic terms were not used often.

“Timebomb” was only twice – once by the BBC

“It also called on the World Health Organization to identify dementia as “an increasing threat to global health” and to help countries adapt to the dementia timebomb.
[http://www.bbc.co.uk/news/health-25318194]

and then by a blog for the “Humanitarian Centre:

“Dementia has been branded a ‘timebomb’, as ageing populations will exacerbate the problems and costs associated with dementia.”
[http://www.humanitariancentre.org/2014/01/tackling-dementia-the-g8-dementia-summit-2]

The terms “bomb” or “bombs” were only used four times, and encouraging one of these was complaining about in a passage complaining about military metaphors.

“To make matters worse people living with dementia were exposed to scaremongering rhetoric. We already know that people living with dementia are directly affected by stereotypes and negative attitudes to dementia. The widespread use of military style metaphors – time bombs, battles, victims and fights in addition to media promotion of the term ‘suffering from dementia’ combine to increase fear of the disease for those living with it. This fear exacerbates the isolation and exclusion that people with dementia often feel following diagnosis.”
[http://www.centreforwelfarereform.org/library/by-date/g8-dementia-summit.html]

The dementia “time bomb” crops up frequently in U.K. broadsheets (Furness, 2012) and tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat

The only use of the word “tide” was in a direct quotation from a speech by Jeremy Hunt, current Secretary of State for Health:

“We have turned the global tide in the battle against AIDS. Now we need to do it again. We will bankrupt our healthcare systems if we don’t,” he said.”
[http://www.reuters.com/article/2013/12/11/us-dementia-g-idUSBRE9BA0HE20131211]

The danger of flooding has long been associated with dementia. A 1982 U.K. report was entitled: “The rising tide: Developing services for mental illness in old age” (Arie and Jolley, 1983).

Note Hunt’s ‘wordie’ contains ‘heartache’, ‘threats’, ‘battle’, ‘dreading’, ‘stigma’ and ‘fight’, but also includes ‘diagnosis’, ‘people’ and ‘research’.

Jeremy Hunt's wordie

It is indeed fascinating the on-running theme of promoting dementia research in the absence of a context of wellbeing.

David Cameron’s ‘Wordie’ is quite tame.

Cameron wordie

But the consequences for this media messaging are potentially quite profound.

Limitations

There is a sample bias introduced with how Google orders its ranking.

Page ranking is not only calculated on the basis of traffic, but also in terms of degree of linkage with other websites.

It is possible that higher ranking articles, particularly online versions of newspaper articles, have a common root such as the Press Association, leading to a lack of independence amongst authors in their coverage of the Summit.

Conclusion

Whitehouse concludes a recent abstract as follows:

“Creating a more optimistic future will depend less on genetic and reductionist approaches and more on environmental and intergenerative approaches that will aid in recalibrating the study of AD from an almost exclusive focus on biochemical, molecular and genetic aspects to better encompass ‘‘real world’’ ecological and psychosocial models of health.”

Encouragingly though the frequency of words such as ‘timebomb’ and ‘flood’ were not as much as one might have feared, from the (albeit small) literature in this field.

If you assume that the 75 articles form a representative cohort of copy on the G8 dementia summit, the picture presented has a clear emphasis on a magic pharmacological bullet for dementia. The copy represents not a balanced debate, on behalf of all stakeholders, but reads like a business case to invest more in neuropharmacological-based research into dementia.

References

Arie, T., & Jolley, D. (1983). The rising tide. British Medical Journal, 286, 325–326.

Fitzpatrick, M. (1996) Creutzfeldt-Jakob disease and bovine spongiform encephalopathy, BMJ, 312, 1037.3.

George, D.R., Whitehouse, P.J., Ballenger, J. (2011) The evolving classification of dementia: placing the DSM-V in a meaningful historical and cultural context and pondering the future of “Alzheimer’s”, Cult Med Psychiatry. 2011 Sep;35(3):417-35.

Furness, H. (2012, March 7). Dementia is ‘next global health time bomb.’ The Telegraph. Retrieved from http://www.telegraph.co.uk/health/healthnews/9127801/Dementia-is-next-global-health-time-bomb.html

Swaffer, K. (2012) Dementia, denial, old age and dying, blogpost here.

Whitehouse, P.J. (2014) The end of Alzheimer’s disease-From biochemical pharmacology to ecopsychosociology: A personal perspective. Biochem Pharmacol. 2014 Apr 15;88(4):677-681. doi: 10.1016/j.bcp.2013.11.017.

Zeilig H. (2014) Dementia as a cultural metaphor, Gerontologist, 54(2), pp. 258-67.

Nudge, dementia friendly communities and consumer behaviour

Should companies be looking to make money out of the concept of ‘dementia friendly communities’ and should charities be using this concept to position themselves against their competitors? If we’re not a nation of shopkeepers, we might be increasingly becoming a nature of consumers rather than citizens. With the promise of unified personal budgets, this consumer-oriented nature of healthcare is likely to gather some momentum. But the relentless drive towards consumerism, I feel, does threaten to play havoc with this policy plank.

As a useful starting point, I feel it’s helpful to consider the work of ‘dementia friendly York’, led the Joseph Rowntree Foundation to propose a model for realising a dementia-friendly community. With the actual voices of people at the heart of the process, they believe that communities need to consider four ‘cornerstones’ to test the extent of their dementia friendliness.

These are:

  • Place – how do the physical environment, housing, neighbourhood and transport support people with dementia?
  • People – how do carers, families, friends, neighbours, health and social care professionals (especially GPs) and the wider community respond to and support people with dementia?
  • Resources – are there sufficient services and facilities for people with dementia and are these appropriate to their needs and supportive of their capabilities? How well can people use the ordinary resources of the community?
  • Networks – do those who support people with dementia communicate, collaborate and plan together sufficiently well to provide the best support and to use people’s own ‘assets’ well?

I have in fact mentioned this in the penultimate chapter of my book ‘Living well with dementia’ available in all good bookshops.

But the way the corporates wish to play this policy I feel has more than a slight twang of ‘Nudge’ about it. “Nudge: Improving Decisions about Health, Wealth, and Happiness” was, of course, the highly publicised book written by Richard H. Thaler and Cass R. Sunstein from the Chicago Law School.

At the heart of nudge theory is the concept of “nudge“. This was originally defined by Richard Thaler and Cass Sunstein as follows:

“A nudge, as we will use the term, is any aspect of the choice architecture that alters people’s behavior in a predictable way without forbidding any options or significantly changing their economic incentives. To count as a mere nudge, the intervention must be easy and cheap to avoid. Nudges are not mandates. Putting fruit at eye level counts as a nudge. Banning junk food does not.”

One of the main justifications for Thaler’s and Sunstein’s endorsement of libertarian paternalism in “Nudge” draws on facts of human nature and psychology.

Sunstein and Thaler use their notions of nudges within the context of choice architecture to propose policy recommendations that they believe are in the spirit of libertarian paternalism. They have recommendations in the areas of finance, health, the environment, schools, and marriage.

I feel that “nudge” has somehow diffused through the ecosystem of ‘dementia friendly communities’ in a rather unhelpful way through the influence of corporate citizens. Thaler and Sunstein believe these problems in decision-making can at least be partially addressed by improving the choice architecture.

They cite ‘daylight saving time‘ – when you “change the label of the time on the clock” when the clocks go backwards as a simple ‘nudge’  with the effect of changing behaviour. Indeed, uring his time as an American envoy to France, Benjamin Franklin, author of the proverb, “Early to bed, and early to rise, makes a man healthy, wealthy and wise”, anonymously published a letter suggesting that Parisians economize on candles by rising earlier to use morning sunlight. This 1784 satire proposed taxing shutters, rationing candles, and waking the public by ringing church bells and firing cannons at sunrise. There is apparently ‘no such thing as a neutral policy’?

The way in which this initiative is presented at all is interesting. If we’re talking about “nudge”, we’re talking about ‘libertarian paternalism’. Libertarian paternalism is the idea that it is both possible and legitimate for private and public institutions to affect behavior while also respecting freedom of choice. Private organisations can use ‘nudge’ on their own, but can of course be vicariously applied through private organisations. Private organisations and the Department of Health are currently implementing “Dementia Friends” – a wide-ranging scheme, with good motives.

To help ‘nudge’ succeed in various guises, it helps if influential people are there somewhere. The current Prime Minister David Cameron, launched the plank of the global dementia friends policy plank  as the branded ‘Dementia Friends’, which is led by the Alzheimer’s Society. Through this people will be given free awareness sessions to help them understand dementia better and become Dementia Friends. This is also led by ‘top influencer’ Jeremy Hughes, the current CEO of the Alzheimer’s Society.

The scheme aims to make everyday life better for people with dementia by changing the way people think, talk and act. The Alzheimer’s Society wants the Dementia Friends to have the know-how to make people with dementia feel understood and included in their community. It is hoped that, by 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health.

To help to implement this policy, quite heavily promoted by parliamentarians, the ‘bandwagon effect’ will help – and this is known of course to Thaler and Sunstein. The general rule is that conduct or beliefs spread among people, as fads and trends clearly do, with “the probability of any individual adopting it increasing with the proportion who have already done so”. As more people come to believe in something, others also “hop on the bandwagon” regardless of the underlying evidence.

Or people could join ‘dementia friends’ through simple “peer pressure”. People are heavily influenced by the actions of others. Sunstein and Thaler cite a famous study by Solomon Asch where people, due to peer pressure, answer certain questions in a way that was clearly false (such as saying that two lines are the same length, when they clearly are not).

First of all, it’s helpful to say we’re not talking where people necessarily make deep active decisions to join ‘Dementia Friends’. We’re not even talking about the Joseph Rowntree Model of “The Four Cornerstones”. I’m applying my analysis to how a member of the public, for the purposes of interacting with a high street chain offering involvement with this initiative, might behave as a ‘consumer’.

The simplest example of a successful nudge in the “choice architecture” of Nudge  is the default option. A default option is simply what happens if you do nothing. Normally, nothing happens, but sometimes even when you do nothing, something happens. (Choice architecture describes the way in which decisions may (and can) be influenced by how the choices are presented (in order to influence the outcome.)

The latest incarnation of this initiative is that our high streets, from the end of February 2014, have set to become more dementia friendly following a commitment from major British businesses. It’s said that, thanks to the Alzheimer’s Society and the Department of Health, our high streets are set to become more dementia friendly following a commitment from major British businesses: Argos, Homebase, Marks and Spencer, Lloyds Pharmacy and Lloyds Banking Group.

This is of course interesting in the context of how consumers make decisions about with whom to shop. Firms will be competing, and becoming “dementia friendly” could be a way of simplifying the process of customer behaviour or choice.

The well known “elimination by aspects”, described in the “Nudge” book, is followed by decision makers during a process of sequential choice and which constitutes a good balance between the cost of a decision and its quality. At each stage of decision, the individuals eliminate all the options not having an expected given attribute, until only one option remains. This short cut was first used by Anne Tversky (1972).

For example, “I want to buy a kettle from a catalogue?” Do I choose Argos or Catalogue R Us, if I want to choose a dementia friendly supplier? Answer: Argos.

And the Alzheimer’s Society have not been the only ones making use of the application of this choice architecture. The end of February 2014 was also big for the Torbay Dementia Action Alliance. Apparently now in Torquay and Babbacombe you probably can spot “purple angel sticker”s in a fair number of shop windows.

But the real important question to ask: who is benefiting here exactly?

While nudges can appear desirable when judged from a short-term perspective, in which they are assessed primarily in terms how effectively they steer behaviour, they can appear problematic from a long-term perspective that renders the process of decision-making rather infantile and primitive.

Libertarians, such as New York University Professor Mario Rizzo and California State University Northridge Professor Glen Whitman, have publicly expressed heir political reservations as concerns about nudges being “vulnerable” to becoming tools that support new, straightforwardly paternalist policies. They specifically warn that ‘nudge projects’ could grow expansively, absorb public resources, and primarily further the ends that choice architects (notably, government bureaucrats) deem valuable. At worst, this is what has happened with the mass roll-out of the corporate involvement of dementia friendly communities.

It’s also mooted that the nudge approach can only work on very simple behaviours: ones where the automatic system can be guided without any input from the controlled system; for example, placing a picture of a pair of eyes above an honesty box for coffees and teas can increase payments because people feel on some unconscious level ‘watched’. A voluntary choice to shop with a particular supplier because of a ‘dementia friendly’ emblem is a pretty basic low-level decision, so it’s anyone guess whether ‘nudge’ is indeed appropriate or not.

Also, veering for the ‘nudge’ approach may be taking the wind from the sales of other valid approaches, such as ‘Steer’ from the Royal Society of Arts, Commerce and Entreneurship. Four example, reduction of dementia friendly communities in this specific scenario for the market place could opt a citizen in the general public from engaging with critical pillars of progressive politics which indeed promote a genuine sense of dementia communities and leadership, viz:

  • Autonomy – citizens need to be able to take control of their own lives in order to achieve their fullest potential wherever this is possible.
  • Responsibility – citizens need to be capable of playing their part in ensuring common goods such as a clean environment and trusting social relationships.
  • Democratic engagement – citizens need to be able to view forms of governance (whether national or local) as open to them and as reflecting their interests.
  • Communal action – citizens need to have ways and means of negotiating and collaborating with one another over achieving common goods and dealing with shared problems.

(RSA Steer Report)

I believe it’s important for people to look at what the principles which guide their own behaviour. This might genuinely involve embracing the philosophy of living well with dementia – or not. And reducing the marketplace into those companies which are dementia friendly or not may benefit the companies more than members of the public, when it comes to the basic issue of people ‘understanding dementia’. Of course, it will be argued that the dementia awareness programmes are currently wide ranging. But I think we have to set our ambitions a lot higher than tokenistic dementia friendliness, important though that the policy is (of befriending), and go much more to the heart of ‘The Four Cornerstones’ model.

Turning ‘dementia friendly communities’ as ‘nudge’ on the high street doesn’t do anything for me.

My name is Shibley, and I’m addicted to buying my own book ‘Living well with dementia’

I’ve sat in more recovery sessions than you’ve had hot dinners….

.. possibly.

So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.

Worth every penny.

Packaging

I am Shibley. and I’m addicted to buying my own book.

in a circle

But I also have a weird habit of getting people I know to sign my copy of my book.

I get withdrawal symptoms from not having enough copies.

I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.

Thanks enormously to the following ‘well wishers’, though, who have signed my book.

A huge thanks to Gill  (@WhoseShoes) for her unflappable support of me and my book.

Here’s Gill’s blogpost.

And here we are!

GS

I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.

Sube

And what does the future hold for ‘living well with dementia’?

Other ‘signatories’ include:

@RichardatKF

Richard Humphries

@lisasaysthis

I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.

Lisa

@crouchendtiger7

CrouchEndTiger

@ermintrude2

ermintrude3

@mrdarrengormley

Darren

But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)

Here it is on Amazon.

Look inside

Here is a sample chapter from my book ‘What is living well?’

‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.

And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!

Book launch

One of the happiest days, as well, was giving Joseph a copy of my book as a gift.

Joseph
Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).

And those were the days…

Royal Free

And THIS is the famous poppy.

This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.

the famous poppy

After I said I was buying my own copies, @KateSwaffer asked:

Klaws

But Kate has read a copy of my book from cover to cover:

And as @Norrms says – how can ‘living well with dementia’ fail?

A new way of conceptualising ‘dementia friendly communities': the elephant and the rider

“An even clearer way to think about Steering behaviour is to take
Jonathan Haidt’s image of an elephant and a rider.34 The elephant
represents our basic automatic responses and habits. The rider
is our goal-directed and controlled decision-making capacity. The
rider is certainly not an all-powerful master – it is no easy thing to
guide the elephant. In fact, some of what the elephant does we
cannot control very easily at all. For example, if the elephant is
hungry he may do nothing we want. Other aspects of the elephant’s
behaviour we can train over time and guide fairly well once we have
learnt how. But most importantly ‘we’ are not simply the rider that
sets goals and gradually masters the elephant. We are the elephant
too, and Steering our behaviour in certain directions means training
ourselves through repeated practice as well as setting goals.
To complete the image of elephant and rider we need to add the
cultivated forest through which the elephant walks. This represents
the social and physical setting of behaviour. Changes in this setting
affect how the elephant behaves and what he is able to do. Nudging
works by changing the layout of the forest. Steering can work by
either changing the forest, or changing the guidance of the rider.
Both these kinds of Steer can help train how the elephant behaves.”

(“Steer” by Matt Grist, RSA, June 2010)

The starting point is that, as a society, there can be enormous stigma and discrimination towards persons with dementia. It’s therefore not good enough to have a person with an early dementia on a panel, with an illusion of participation. Dementia friendly communities, whilst a great start in policy, may need some form of disruption to bring about a total change in gear towards dementia-led communities.

I view getting corporates to act in dementia-friendly ways is a ‘nudge’ manipulation of the market to change behaviour through market incentives. But I feel it’s inherently passive.

A much better approach would be instead of focusing on the elephant would be to look at what the rider does. A person with early dementia might be empowered in looking at what cognitive abilities he or she still possess, to the benefit of leading projects that he or wishes to engage people with.

This would be an active process, and could involve engagement of persons with an early dementia with what they feel about the world about them – making them active members of the community, not recipients of a market ‘kind to them’.

Looking at how persons with a dementia could lead decisions collectively in communities, with appropriate and proportionate oversight, is altogether more ambitious. This policy shift could instead be quite inspiring, rather than simply ‘befriending’ a person with dementia.

I gave recently an example of a person leading an initiative in the community. This was Chris Roberts’ idea of running a café for people with dementia, so that they could have some ‘me time’ and talk about issues which they considered important. (This was in another blogpost on my blog here.)

There’s perceived to be somewhat of a taboo in discussing with persons with dementia how the brain works, and yet the focus has been to explain to people without dementia what dementia is. It should be rather a case of individuals becoming experts in their own medical health and illness too. It should therefore be a case of persons with dementia engaging with public to explain how their condition affects their lives, and how their understanding of their condition as people contributes to a plural scientific dialogue.

This nature of information asymmetry about dementia – between persons with dementia and those without – necessarily invokes a difference in social power and status, but improved social inclusion could be a fruitful first aim.

I think part of the issue how persons with early dementia can be empowered into leading on decisions in their community involves some reflection of how their brains work (rather than not work) for them. By concentrating on strengths of existant cognitive abilities, the rider can be given the right tools to be in charge of the elephant.

Befriending still runs the risk of tokenism, which I very much worry about.

The truth behind *that* blood test for Alzheimer’s

Nothing could be better than you going to your GP and ordering a simple blood test for dementia?

Or could it?

There’s been an increasing awareness that the imparting of the initial diagnosis of a potential diagnosis is often botched up.

It’s often said it’s done in a hurry. There’s no form of pre-counselling or post-counselling support.

The scope for hyperbole of reporting of this paper was of course massive.

Ken Howard, who is living with a dementia himself, and who campaigns especially in this specialised area, put it succinctly in a tweet of his.

The Guardian boasted:

Guardian headline

This is based on a concise report in Nature Medicine.

The full reference is: Mark Mapstone, Amrita K Cheema, Massimo S Fiandaca, Xiaogang Zhong, Timothy R Mhyre, Linda H MacArthur, William J Hall, Susan G Fisher, Derick R Peterson, James M Haley, Michael D Nazar, Steven A Rich, Dan J Berlau, Carrie B Peltz, Ming T Tan, Claudia H Kawas, Howard J Federoff. Plasma phospholipids identify antecedent memory impairment in older adultsNature Medicine, 2014; DOI: 10.1038/nm.3466

By far the best report was by Laura Donnelly (@lauradonnlee) in the Telegraph:

Telegraph headline

That particular report was extremely good.

Take for example Donnelly’s care over this sentence:

“Existing drugs for Alzheimer’s disease work best if given early, and can lessen the symptoms, but do not slow overall progression of disease.”

This is absolutely spot on.

The BBC24 news on the other hand at 11 am said, with a headline read out by newsreader Joanna Gosling, “Scientists in the USA have developed a blood test which could accurately predict the onset of Alzheimer’s.”

In this study, researchers from Georgetown University Medical Centre in the US examined 525 healthy participants aged 70 and over and monitored them for five years. During the research 28 participants went on to develop the conditions, according to their reported criteria, and 46 were diagnosed at the start of the study.

Their composite neuropsychological score is a composite score across a number of domains – this is fair, but of course entirely arbitrary. One could argue (or not) it should have been more duly weighted to episodic memory which comprises the more typical early presentations of Alzheimer’s disease.

One of the first issues, as for many papers of this nature, is how reliable these diagnoses are. According to Professor Seth Love from Bristol, in most published series, the accuracy of clinical diagnosis of the different diseases that cause dementia is of the order of 70–80%. This means 20-30% have possibly the wrong diagnosis.

Therefore Love argues that establishing a precise diagnosis by post-mortem neuropathological examination will not, of course, benefit the individual patient but matters nonetheless, for several reasons.

It’s interesting also noting his response, as scientific adviser to Alzheimer’s BRACE (@AlzheimersBRACE) here, too.

Back to the study reported in Nature Medicine, midway through the research, the authors analysed 53 patients who already had one of the conditions and 53 “cognitively normal” people.

They discovered ten molecules that appeared to”reveal the breakdown of neural cell membranes in participants who develop symptoms of cognitive impairment or Alzheimer’s. They then tested other participants’ blood to see whether these “biomarkers” could predict whether or not they would go on to develop the conditions.

These are specialist assays. They are not ‘routine blood tests’ like a full blood count, liver function tests, or urea or electrolytes. Therefore they, if they were ever to be rolled out, would have considerable cost implications.

And there is an important biological issue why a build-up of toxic substances, if in the brain become manifest as a decline in thinking sufficiently bad to warrant a diagnosis of dementia, should effect cells in the rest of the body.

The separation of the brain and body through the blood-brain barrier is totemic.

The explanation of this by the authors is indeed long.

“The defined ten-metabolite profile features PCs and ACs, phospholipids that have essential structural and functional roles in the integrity and functionality of cell membranes. Deficits of the plasmalemma in AD have been described previously. Studies have shown decreased plasma PC levels and lysoPC/PC ratiosand increased cerebrospinal fluid (CSF) PC metabolites in patients with AD15, as well as decreased phosphatidylinositol in the hippocampus16 and other heteromodal cortical regions. Furthermore, amyloid-β may directly disrupt bilayer integrity by interacting with phospholipids. ACs are known to have a major role in central carbon and lipid metabolism occurring within the mitochondria. They have also been associated with regulation, production and maintenance of neurons through enhancement of nerve growth factor production, which is a known potent survival and trophic factor for brain cholinergic neurons, particularly those consistently affected by AD within the basal forebrain.”

This is a convoluted explanation which does not make clear whether the investigators had any particular hypothesis as to which molecules would be affected BEFORE the study.

cell membrane

The lack of the clear hypotheses BEFORE the study makes one immediately suspicious about whether the authors have corrected adequately for running lots of statistical comparisons after the study.

But I think this might be OK – as they have applied a statistical Bonferroni correction for multiple comparisons.

But it MIGHT NOT be OK.

This study is reported to be the first research that has been able to show differences in biomarkers in the blood between people with Alzheimer’s before the symptoms occur and people who will not go on to develop the condition. It’s worth noting that there are hundreds of ‘varieties’ of dementia, so this research whilst interesting will not be directly relevant to those dementias.

The finding has potential for developing treatment strategies for Alzheimer’s at an earlier stage – when therapy would be more effective at slowing or preventing onset of symptoms, according to the authors. But there has never been a consistent body of research demonstrating beneficial effects in the majority of patients slowing the rate of progression. Some might say that we should spending much effort into making sure that people are able to live well with dementia.

Prof Federoff, a professor of neurology at Georgetown University, said: “The lipid panel was able to distinguish with 90 per cent accuracy these two distinct groups: cognitively normal participants who would progress to mild cognitive impairment or Alzheimer’s disease within two to three years, and those who would remain normal in the near future.” (as reported in the Telegraph)

“Our novel blood test offers the potential to identify people at risk for progressive cognitive decline and can change how patients, their families and treating physicians plan for and manage the disorder.”

Note this conversion is to mild cognitive impairment (“MCI”) or Alzheimer’s Disease, however, and the two entities are very distinct. It is far from clear, in the experience of a reasonable body of academics, whether you can safely say MCI is a ‘predementia’ stage of dementia.

They are two completely different entities, a point completely glossed over by people with no medical training.

A “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

This unnecessary conflation of MCI and dementia of Alzheimer’s type (dementia), widespread in many media reports, is extremely unhelpful therefore.

And above all, this will have to be replicated with a different group of patients, different clinicians making their probable diagnoses, and a different way of measuring the composite score (or implementing an altogether different neurocognitive assessment, if necessary.)

Dr Doug Brown, director of research and development at the Alzheimer’s Society, and who does not have a medical degree but did a PhD in Molecular Biology at Cambridge after doing his undergraduate degree in Biochemistry and Genetics in Sheffield, added:

“Having such a test would be an interesting development, but it also throws up ethical considerations.”

“If this does develop in the future people must be given a choice about whether they would want to know, and fully understand the implications.”

This is completely correct.

But the paper does not have an ethical discussion at all by the authors – chacun à son goût.

One of the good consequences of the #G8dementia is that there overall has been better awareness of the dementias. This can only be a good thing.

As there is better awareness, the need for accurate reporting is imperative. Massive congratulations therefore to Laura Donnelly who gave an extremely balanced and measured report of this article.

I have been most worried about the question ‘what happens next?’ once you make the diagnosis here of Alzheimer’s disease before the onset of symptoms.

I have always been concerned that the outcome from the medical model, diagnosis and investigations, has to be a medical treatment; in other words you always hear ‘we can intervene quicker with treatments’, with scant regard for living well strategies.

This is why it is so helpful to have Prof Martin Rossor (@martinrossor)  at Qeuen Square, recently put in post as NIHR National Director for Dementia Research.

I think many academics would have allowed publication of these data, but probably wished for a more critical interpretation of the results. But Nature Medicine papers are notoriously short, and in the public interest, on the balance of probabilities, it was ‘better out than in’.

And news just in.

The lead author, Mapstone, said nothing about the efficacy of current treatments in his BBC interview this afternoon. When asked by presenter Carole Walker about this major drawback in the rationale in the screening process, Mapstone argued the need to validate the results first in a larger and diverse population.

And of course Mapstone stated one of his intentions.

Nonetheless, this all has a feeling of ‘the shock doctrine‘ about it – where we’re supposed to be shocked so much, we’re meant to dig deep into our pockets to support Pharma. A bit of money for social care wouldn’t go amiss.

US subcommittee perspective on the G8 Dementia Summit

It’s worth watching this video from thirty minutes in.

This video was originally streamed live on Jan 15, 2014 as, “Subcommittee Hearing: A Report on the G-8 Dementia Summit”

Details: Subcommittee on Africa, Global Health, Global Human Rights, and International Organizations | 2200 House Rayburn Office Building Washington, DC 20515 | Jan 15, 2014 2:00pm

This video discusses the potential for international collaboration in work on dementia, given regional disparities on ‘surveillance’ of dementia.