Dementia friendly communities

It’s time we talked about ‘dementia friendly communities’

Shibley Rahman 7 Comments

This could be the video from any corporate. The point is that the video contains very familiar concepts and memes which can be marketed very easily.

I have reviewed the development of the policy of ‘dementia friendly communities’ in the penultimate chapter of my book ‘Living well with dementia’.

The description of “dementia friendly communities” given by the Alzheimer’s Society is provided as follows:

“The dementia friendly communities programme focuses on improving the inclusion and quality of life of people with dementia… In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives.”

This definition doesn’t make sense to me as it ignores networks – networks (including social networks such as Facebook and Twitter) are particularly important to those whose physical or mental health might pose formidable barriers to being physically in any one place in a community.

But when you ask “what is a dementia friendly community?” inevitably the question becomes re-articulated “what constitutes a community, and what counts as it being ‘friendly’ to ‘dementia’?”

And immediately you see the problems. How large is a community? Or put another way what constitutes the boundaries of the community? In theory, a community could be members of a part of the Lake District, or the Square Mile. Being ‘friendly’ demands the question ‘how long is a piece of string’? Without some clarity, this construct is ‘motherhood and apple pie’ and a perfect tick-box vehicle for commissioners to demonstrate that they’ve done something about “dementia friendliness”.

But simultaneously shutting down a day centre will immediately take out any feel good factor of commissioning decisions, leaving people with dementia sold down the river.

And headlines such as this from today’s Guardian continue to make a complete farce of ‘dementia friendly communities‘:

social care cuts

And which dementia? There are about a hundred different causes of dementia, the most common one being globally Alzheimer’s disease, characterised typically in the early stages with real problems with learning and encoding new memories (and subsequent retrieval).

So it’s conceptually possible to talk about dementia-friendly communities where you put up signage everywhere so people with Alzheimer’s Disease, who have spatial navigation difficulties, can get a bit of help.

But not all memory problems are dementia, and not all dementias present with memory problems.

But what those people with frontal dementia who have perfect memory, but who present with a slow change in behaviour and personality according to their closest ones?

How should we make communities ‘friendly’ to them?

The policy construct immediately experiences an obstacle in that it talks about ‘dementia’ as one great mass, an error previously made for ‘the disabled’. But this criticism is of course by no means fatal – as conventional communities also contain a huge range of people of all different characteristics, anyway. But is then the concept too broad as to be meaningful, such as “male friendly communities”?

Something which Kate Swaffer, an Australian who has significant experience in campaigning for advocacy for people with dementia, and who herself lives with dementia, recently shared on Twitter was this eye-catching caption.

persimage

And you see the difficulty? How do we design a ‘community’ which is ‘friendly’ to ‘dementia’, if you believe like me that once you’ve met one person with dementia, you’ve met one person with dementia?

It’s clearly impossible to legislate for someone to be ‘friendly’ to another person in a society, however loosely defined, but it is worth at least acknowledging the existant law.

You can’t have a policy that discriminates against a group of people to their detriment, with that group of people defined by a ‘protected characteristic’ under equality law in this jurisdiction. Dementia can fall under this protected characteristic definition, as legally it can come under the definition of disability; any discrimination of disabled people is unlawful.

But you can easily argue that the policy fosters a spirit of solidarity far beyond rigid compliance with the law. Such solidarity of course seems somewhat at odds with the backlash against any form of state planning from this government and previous governments.

I’ve thought long and hard about the need to try not to dismiss worthy initiatives in dementia policy. For example, whilst I am concerned about the error rates of ‘false diagnosis’ of people with dementia, I would be equally concerned if NHS England did nothing to try to identify who the undiagnosed with dementia currently are.

Likewise, my natural instinct is to think about whether the charity sector is distorted with initiatives such as ‘Dementia Friends’.  According to the Government’s website, 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. The scheme has been launched in England, and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Linking the global policy of dementia friendliness to one charity, when other similar initiatives currently exist (such as the Purple Angels, Joseph Rowntree Foundation, University of Stirling, WHO, and RSA), means that many dementia charities may get unfairly ‘squeezed’.

I do, however, intuitively and desperately wish this policy to succeed. For example, at my stall yesterday at the SDCRN 4th Annual Conference (the Scottish Dementia Clinical Research Network), a person called Hugh actually bothered coming up to me to tell me how much being a ‘Dementia Friend’ meant to him. He talked about friends of his who were ‘Dementia Champions’. He spoke with tremendous affection about his late wife had lived with dementia for eight years, and the importance of community work to him.

my stall

And it is very difficult to deny that initiatives such are this are truly wonderful.

Pharmacy

A real concern, though, is that by conceding one is building a ‘dementia friendly community’, even with all the best will in the world, the term itself doesn’t for me suggest or promote real inclusivity. It still sadly implies a ‘them against us’. I think I have this attitude because I’m physically disabled, and I would balk at the term ‘disabled friendly community’. It’s incredibly important that this policy is not London-driven friendly communities with more than a twang of tokenism.

I am therefore leaning towards a viewpoint expressed by Simon Denegri, Chair of INVOLVE, and NIHR National Director for Public Participation and Engagement in Research:

And surely you’d want businesses and corporates to be ‘dementia friendly’? But which corporates, and why dementia? Surely you’d want them to be friendly with rare muscle wasting diseases, or cancer, for example? Shouldn’t carers get their own “carers friendly communities”?

This poses big problems for our perception of inclusive communities.

Alastair shared a lovely picture which sums up the problem for me.

You can easily see why certain corporates such as banks might wish to help out with this policy, because people with dementia can be at risk of financial abuse, but is this a genuine drive to help people with dementia or is it a pitch to secure competitive advantage like ‘ethical banking’.

Apart from isolated stories such as of dedicated no-hurry lanes in supermarkets, for example, surely one would have expected supermarkets to have pulled out all the stops with adequate signage everywhere? Many large supermarkets have about thirty lanes where it’s easy for the best of us to get lost. I don’t think I’ve ever been to a dementia-friendly supermarket where the signage would be of a good enough quality to prevent a person with mild Alzheimer’s Disease becoming spatially disoriented.

“Dementia friendly communities” lend themselves easily to ‘diversity marketing’, however. Diversity marketing is a marketing paradigm which sees marketing (and especially marketing communications) as essentially an effort in communication with diverse publics. As an acknowledgement of the importance of diversity marketing is that AT&T Inc. has a post for this discipline at vice president level. It is reported that, starting in the 1980s, Fortune 500 companies, government agencies, universities and non-profits organisations began to increase marketing efforts around diversity, according to Penn State University.

I asked my friends on Facebook whether there was anything particular ‘immoral’ about this diversity marketing in relation to dementia friendly communities, and their responses were as follows.

Comments 1

Comments 2

In other words, there is no ‘right answer’.

It’s clear to me that this policy, as it is currently being delivered, needs much greater scrutiny in terms of where the benefits have been, and for whom.

 

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

Shibley Rahman 2 Comments

“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.

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

Shibley Rahman 0 Comments

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).

Nudge, dementia friendly communities and consumer behaviour

Shibley Rahman 1 Comment

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.

Would selling ‘dementia friendship’ courses be like selling ‘Peckham Spring’?

Shibley Rahman 0 Comments

At the outset, I would like to say that I am not aware of anyone selling courses on dementia friendship.

But it would perfectly feasible to set up a course with some sort of kite mark or quality standard, where you reach an objective level in dementia awareness, and to sell you a qualification in it.

There’s nothing, arguably, particularly immoral in it in that it’s selling education, such as for plumbing or complicated neurosurgery.

It is indeed a worthy cause – raising dementia awareness.

However, policy in England has recently seen a drive towards commodification of public services.

A number of entities are also working in increasingly corporate ways, in their access to finance, marketing, operations management and strategy.

However, policy in England has recently seen a drive towards commodification of public services.

Various organisations are also working in increasingly corporate ways, in their access to finance, marketing, operations management and strategy.

So there’s nothing to stop people ‘selling’ how to do dementia friendship. Even though it’s hard to value dementia friendship, it would be pretty easy to cost it.

People have found increasingly innovation-worthy ways of selling water.

Dementia friendship is a wide-ranging policy across a number of jurisdictions. Many people have befriending an individual with dementia without making a song or dance of it.

However, unfortunately, dementia friendship is open to commercial abuse.

It reminds me of the law on foraging – as such picking berries on farms is not against the law, but selling them by the bucketload for commercial gain is in fact a theft offence potentially under the Theft Act (1968).

“Mother Nature’s Son” was an episode of “Only Fools and Horses”, first transmitted on Christmas Day 1992.

Rodney is concerned that Del has lost his drive. When confronted, Derek explains that on top of his woes, the council have approved his application to buy their flat in Nelson Mendela House, doubling the rent. On top of that, Grandad’s allotment has become a health hazard and he has to clear it.

Finally spotting a gap in the market, Del decides to bottle tap water and sell it as Peckham Spring Water.

It is a legally interesting question as to whether you could rebottle tap water, which you’ve paid for, and sell it under your own branding.

Yes – it’s all about rent-seeking as usual; this is defined as is spending wealth on political lobbying to increase one’s share of existing wealth without creating wealth. The effects of rent-seeking are reduced economic efficiency through poor allocation of resources, reduced wealth creation, lost government revenue, national decline, and income inequality.

And so it goes on.

Should dementia charities trademark their campaign logos?

Shibley Rahman 3 Comments

The idea of all charities being fluffy and nice is long gone.

One or two have eyewatering incomes which stick in your throat somewhat. They are fully corporate in behaviour, and have access to the same tools used by other corporates (including corporate lawyers).

On the other hand, some dementia activists have ploughed on regardless with comparatively much less income.

Norman McNamara posted in his Facebook group for people interested in dementia, recently, news of a communication which he’d received.

This was from Jeremy Hughes, CEO of the Alzheimer’s Society, about how the (Ostrich) Purple Angel could be shown side-by-side with the Alzheimer’s Society “Forget-me-not” symbol.

Jeremy Hughes’ email mentioned that other symbols chosen to support and promote dementia awareness, including the Purple Angel and the Butterfly Scheme, should sit alongside the forget-me-not contributing to overall efforts to create greater dementia awareness.

Norman felt this was great. It was on the day Norman (‘Norrms’) was due to present on behalf of the Torbay Dementia Action Alliance.

NORMAN

In it together?

To make up for this potentially irritating situation, however, Norman has massive goodwill from persons with dementia and their friends.

In answer to my question above, “Should dementia charities trademark their campaign logos?”, a friend of mine suggested on Facebook, “they’d be mad not to.”

The idea of dementia communities is not new.

Norman’s ‘purple angel’ is in the top left hand corner of this page. Clearly the “Purple Angel” looks nothing like the “Forget me not” visually.

The “Forget me not” emblem is seen here on the “Dementia friends” website.

And adding to the confusion is the issue that the ‘forget-me-not’ is apparently the emblem of members of the Freemasons community, so that they can recognise each other.

See for example this recent e-Bay item.

Masonic

There’s also a huge number of them, some of which will have been registered despite not being that distinctive.

All of this is incredibly important legally, when you analyse how the law works for infringement of a trademark works under the Trade Marks Act (1994). The relevant clauses are s.10(2)(a) and s.10(2)(b).

The concept of friendship in dementia can be deciphered from a number of different sources in fact.

For example, the concept is a natural extension of the “connected communities” idea of the RSA. This is a programme that explores ‘social network’ approaches to social and economic challenges and opportunities.

They concentrate on understanding and mobilising ‘real world’ face to face networks of support and exchange between citizens, small informal groups, public sector and third sector agencies, and private sector businesses.

Supportive communities are well known in Japan.  For example, Fureai kippu (in Japanese ふれあい切符 :Caring Relationship Tickets) is a Japanese currency created in 1995 by the Sawayaka Welfare Foundation so that people could earn credits helping seniors in their  community.

The basic unit of account is an hour of service to an elderly person. Sometimes seniors help each other and earn the credits, other times family members in other communities earn credits and transfer them to their parents who live elsewhere.

In Japan, there’s a strong ethos and established history of ‘befriending’, and English policy has emulated that. Imitation is the best form of flattery, but not when it comes to intellectual property law.

There’s also WHO.  The WHO Global Network of Age-friendly Cities and Communities was established to foster the exchange of experience and mutual learning between cities and communities worldwide.

Any city or community that is committed to creating inclusive and accessible urban environments to benefit their ageing populations is welcome to join.

The Joseph Rowntree Foundation initiative “York Dementia Without Walls” project looked into what’s needed to make York a good place to live for people with dementia and their carers.

They found that dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life.

As part of this project, the team also worked with groups of people with dementia to create a dementia-friendly summary of the research.

Thus it can be easily argued that the concept of dementia friendship is generic.

This applies not only to words that begin life as generic terms, but also to words that begin life as brand names but are appropriated by consumers as another word for the types of goods/services they were coined to brand.

This is what happened to the terms “escalator,” “cellophane,” and “aspirin,” which were originally created to serve as marks, but which became so widely used to refer simply to that type of good (any elevated moving stairway, any plastic wrap, any acetylsalicylic acid painkiller) that they lost their ability to brand.

But here, the concept of dementia friendship is already widespread in global policy.

The Alzheimer’s Society have protected their visual mark for “Dementia Friends” on the trademark register for the IPO, as trademark UK00002640312. This is across various “classes”.

A trademark in English law was traditionally used as a “badge of origin”: a mark or sign that would tell purchasers exactly who had made the particular product they were about to buy.

Today, the largest companies in the world value the goodwill that’s embodied in their names in the hundreds of millions of pounds.

Trademarks distinguish the goods or services of one trader from those provided by its competitors: e.g. a smartphone from Samsung compared to a similar one from Apple.

The overzealous use of registering trademarks is demonstrated well in the recent furore over the word ‘candy’ Gamemakers have mounted a protest against King.com after it trademarked the word “candy”.

The company trademarked the word in Europe in a bid to protect its best-selling Candy Crush Saga game. The Candy Jam webpage said the protest was in response to King.com’s action to defend its trademark.

The Candy Jam page accused King.com of being a “bully” and said the issue had now become one of “freedom and creativity”.

Here, trademarking logos for campaigns is wandering into dangerous territory, when most dementia campaigners wish to promote the concept of friendly communities. However, it is reasonable that any society should wish to act against a competitor producing confusing very similar merchandise.

Nonetheless, at an extreme, protecting the trademark, in this case represented by a commercial and corporate firm known to have a penchant for competition law in contemporary NHS legislation by the current Coalition, might be seen as a tad corporate and bullish.

Here there is an intriguing possibility of a “Goliath” medical charity exerting its right one day to take a “David” medical charity to court over an innocuous mix-up where a smaller charity, without good legal resources, setting up its own dementia friends scheme with a confusingly similar logo.

Whilst a trademark protects innovation in English law like other jurisdictions, it is also a monopolistic right which exerts an anti-competitive effect.

This is actually a formidable legal policy issue, known to Barack Obama and Abraham Lincoln.

If it shows ‘mission creep’ in the form of large charities ‘competing’ in the third sector with the help of the commercial law, that’s arguably a problem.

In theory, the Freemasons could wish to argue in court that their motif, being more longstanding, is being infringed by the Alzheimer’s Society symbol.

I am not aware that the Freemasons hold a registered trademark for the “forget-me-not” symbol. If they don’t, they are open to take a claim in the common law of tort of passing off.

However, yet another ‘forget-me-not-esque’ motif also exists on the Trade Marks Register (and do several similar others too.)

And as it is a prior motif by Landsforeningen LEV, it would be up to Landsforeningen to argue it was sufficiently similar. They would have the right to raise an objection as the Alzheimer’s Society registered their ‘dementia friends’ trademark after their ‘forget-me-not’ symbol.

The Alzheimer’s Society would only have to argue that theirs is sufficiently different because of the words “Dementia Friends”, it’s for a different sector entirely, and in a different colour. And they could easily produce survey data to demonstrate there had been no confusion, one speculates.

But the colour combo is unfortunate!

LEV

But you see what I mean?

It gets unnecessarily corporate, complicated and potentially costly to go down this route.

At worst, this registration of a trademark sends a powerful message to any other smaller dementia charities wishing to promote the concept of friends, in a move not dissimilar to pre-emptive “cybersquatting” for a domain name.

A danger here comes down to what you mean by ‘badge of orgin’.

People may think that the Alzheimer’s Society is the sole origin of the idea of friends in dementia, where as I’ve described it comes from a number of sources which have acted rather in parallel, or in a collaborative manner.

On the other hand, it is perfectly reasonable for the Alzheimer’s Society to wish to protect strongly their emblem, in case a competitor tries to copy it in such a way a member of the public might get confused with that precise initiative in which the Alzheimer’s Society have presumably invested quite a lot of time, money and effort.

But we are perhaps taking a leaf now out of the US “competition” book, which caused the market in the NHS in England to be turbo-boosted through the ill-fated “section 75″ and associated Regulations.

In the U.S. non-profit sector, there has been a growing problem with the phenomenon of ‘brandjacking’.

A guest blogpost here describes how the Christmas SPIRIT Foundation accidentally discovered an industry competitor “had created a copycat ripoff of our TweetUp4Troops effort to generate support for the Foundation’s Trees for Troops program”.

Indeed, in the article, the author describes:

“To engage more consumers in the program and to generate financial support for Trees for Troops, the Foundation created and organized TweetUp4Troops events to be held during Veterans Day Week (Nov 7-14). As part of the campaign, the Foundation created a TweetUp4Troops group site, web site and Twitter handle.”

Charities are able  to register a trademark, particularly if they have the funds, a visually attractive and distinctive emblem such that any infringer can take be taken to court, for an injunction or damages (for example).

But is this actually how we want charities to operate, the income source of which includes people who have given up money to further a cause very personal to them?

It is sad that certain charities are tending to work in increasingly corporate ways, with a good understanding of the application of the commercial and corporate law, to secure competitive advantage in an intensely difficult market.

The Alzheimer’s Society clearly has a head start in marketing their ‘Dementia Friends’ initiative, through their badges which can be worn by MPs in parliament.

It also has a very powerful strategic partnership with the Department of Health in promoting the Prime Minister’s Dementia Challenge.

While there is clearly a need for the Alzheimer’s Society to protect their brand in ‘Dementia Friends’, there is a difficult balance to be enforced to make sure that this does not impede smaller entrants to the market of fundraising.

This is especially critical given how difficult it has been for smaller charities and community interest groups involved in dementia to keep going, despite of or because of the Prime Minister’s Challenge.

[Many thanks to C.R. for a discussion of the meanings of an emblem discussed in this blogpost.]

Corrigendum

I incorrectly referred to a ‘Torbay Ostrich’ in an earlier published version of this blogpost. This, of course, doesn’t exist. I was sent however kindly a possible sighting of it.

Torbay ostrich

Dementia friendly communities: corporates not behaving badly, or clever marketing?

Shibley Rahman 2 Comments

communities

There is of course an element of both. “Dementia friendly communities” could be an example of corporates not behaving badly, to create a competitive advantage for themselves; or it could be quite nifty marketing.

Corporates not behaving badly, officially known as “corporate social responsibility” is a form of corporate self-regulation integrated into a business model. CSR policy functions as a built-in, self-regulating mechanism whereby a business monitors and ensures its active compliance with the spirit of the law, ethical standards, and international norms.  It’s in keeping with the idea of corporates like citizens just like the rest of us, like trade unions, for example, all co-existing “in the public good“.  CSR is a process with the aim to embrace responsibility for the company’s actions and encourage a positive impact through its activities on the environment, consumers, employees, communities, stakeholders and all other members of the public sphere who may also be considered as stakeholders. Given the talk of “pandemic” and “time bomb”, it’s not a huge surprise corporates will wish to be in on the action. Some were out in force last week at the #G8summit. So that’s the answer to the question posed by Vivienne Parry in the session with NIKE and BT: “What are they doing here”?

Companies the world over, whether they are involved in consumer sales, B2B, intermediaries, charities or NGOs, all recognise the importance of marketing. Marketing tends to be something which many people feel they can have a dabble at, but of course charities have highly skilled people doing it just like any other corporate. ‘Strategic marketing‘ has been defined by David Aaker as a process that can allow an organisation to concentrate its resources on the optimal opportunities with the goals of increasing sales and achieving a sustainable competitive advantage. Or surplus, if you’re in the third sector. Talk to any smaller charity going out of action, like Dementia Advocacy Network, and you’ll see cut-throat it can be.

The highly visible “dementia friendly communities” programme of the Alzheimer’s Society focuses on improving the inclusion and quality of life of people with dementia, as described here.  The Alzheimer’s Society’s five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities.  In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives. And it’s also great publicity for corporates which sign up. The Prime Minister’s challenge on dementia also includes an ambition to create communities that are working to help people live well with dementia, and which politician doesn’t seek to be re-elected?

However, the concept is actually not at all new.

The “York Dementia Without Walls project” from the Joseph  Rowntree Foundation looked into what’s needed to make York a good place to live for people with dementia and their carers. It’s argued fundamentally that dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life. Working with people with dementia, the research team investigated how local resources can be harnessed to this end, provided there is enough awareness. It was great work.

They were not alone. The RSA also developed their “connected communities” project. Connected Communities is a research programme that explores ‘social network’ approaches to social and economic challenges and opportunities. They concentrated on understanding, mapping and mobilising ‘real world’ face to face networks of support and exchange between citizens, small informal groups, public sector and third sector agencies, and private sector businesses.

This RSA group perceived the answer was to be found in “networks” because networks have dynamic qualities through which behaviour, emotional states, conditions, and influence spread and cluster, often in quite specific ways.

The UK indeed is not alone.  There’s been a growing number of cities and communities worldwide are striving to better meet the needs of their older residents.

The WHO Global Network of Age-friendly Cities and Communities was established to foster the exchange of experience and mutual learning between cities and communities worldwide. Any city or community that is committed to creating inclusive and accessible urban environments to benefit their ageing populations is welcome to join.

And these initiatives have had great success, which is to be applauded. In October 2013, it was announced that a landmark guide for banks and insurers to help improve the everyday lives of people affected by dementia was being launched by Lloyds Banking Group and Alzheimer’s Society. The ‘Dementia-friendly financial services charter‘ was designed to help financial services organisations recognise, understand and respond to the needs of customers living with dementia and their carers. Financial abuse can be a massive source of worry for carers of people living with dementia, so it was wonderful Lloyds Bank participated in this innovation.

So why should corporates prefer to go with the Alzheimer’s Society? It is quite possible that this is due to the strength of the brand of that society.

A parallel can be seen in property law.

A landlord would obviously prefer to know that his tenant is solvent and reputable and consequently more likely to perform all leasehold covenants.

Property professionals often refer to covenant strength and try to determine whether a proposed tenant is a “good covenant”. For investors the covenant strength of the tenant is an extremely important factor. If a landlord has tenants with good covenant strength, the property will be more attractive to potential buyers and its value will be likely to go up.

The parallel is the power of the brand of a charity – its “pulling power”.

Businesses and charities put a lot of time into their outward reputation, in the hope of attracting more inward business. Whilst Google hits are not per se a sign of popularity and goodwill, because for example a Google ranking might depend on the number and quality of pages which link to that webpage, the ranking of a phrase can be a good indication of the power of a brand.

Here it is quite interesting that the Alzheimer’s Society puts up a good showing for a search of ‘dementia friendly communities’. A possible reason for the society’s success here is to find in the last entry of this extract: the powerful strategic alliance it has with the Department of Health, who will clearly want this project to succeed.

Google search

Despite various third sector and corporate entities competing with each other, there has been remarkably little scientific peer-reviewed published evidence on “dementia friendly communities”. Here for example is the output from the ‘Medline’ database encompassing a huge collection of medical journals. This search only returned two pieces, where the abstract was not even available. Many, therefore, will have agreed with Sir Mark Walport, the Chief Scientific Officer, to query publicly at #G8dementia what the precise evidence base for the “dementia friendly community” is currently.

Medline search

Notably, the prestigious Stirling group (DSDC) aired their concerns here:

““Dementia-friendly” has become part of the language of strategic planning in the public and third sectors, since the launch of the Prime Minister’s Challenge on Dementia in England in 2012 included the creation of dementia-friendly communities as one of its three main objectives. However, its exact meaning is inconsistent.

Being “dementia-friendly” has also become an aspiration for specific organisations, for facilities and buildings and for services – sometimes as part of a wider commitment, sometimes stand-alone.

DSDC does not believe there is a single model of “dementia-friendly”, or any need for one.  But it does advocate for objective measures of what is being promoted as “dementia-friendly” to ensure it is not just a popular phrase used to cover shallow or cosmetic change. In terms of what we do ourselves, DSDC aims to help any group or community work out what can be achieved on a sustainable basis given available local resources.”

Piercy and Lane (2009) from the Warwick Business School really elegantly reviewed the relationship between corporate social responsibility and strategic marketing in their article, “Corporate social responsibility: impacts on strategic marketing and customer value” [The Marketing Review, 2009, Vol. 9, No. 4, pp. 335-360].

The initiative of Lloyds embracing “dementia friendly communities” can be at once understood through Piercy and Lane’s discussion of the notion of “ethical consumerism“”

“Commentators on branding suggest that ethical consumption is one of the most significant issues in modern markets. The conclusion is that ethical and environmental questions are being posed by growing numbers of consumers, but they are not always overly impressed by companies’ responses. It is also unclear how robust ethical consumerism will be in the face of other pressures – sales of organic foods fell nearly 20% in the UK in 2008, as consumers reverted to cheaper alternatives when economic conditions worsened. Nonetheless, the impact of “ethical consumerism” is large and of escalating significance.”

A particular banks, despite being in a relatively crowded market (and hence oligopolistic), particularly need to demonstrate why it’s better than the rest, and ethical consumerism has been particularly important for this in recent times, possibly in a way accelerated by the global financial crashes.

Also such initiatives are particularly attractive to investors, viz:

“There are growing signs that many corporate boards of directors are under shareholder pressure to adopt more acceptable environmental policies and keep a closer watch on environmental issues, reflecting investor concerns about global warming and shortages of natural resources. The attitude of investors toward CSR initiatives may be positive or negative. For example, it may be from an investor perspective the case for sustainability is essentially a business case – initiatives are not about “saving the planet”, but about cutting waste, reducing costs and becoming more efficient. In 2006, Google launched a strategy to switch to renewable energy – while this reflects the personal beliefs of the founders of the business, it is also true that Google is a massive user of electricity and renewable energy provides a way to cut costs. Nonetheless, when Google announced its renewable energy strategy, one leading New York stock analyst downgraded the company, despite clear indications that the initiative would cut costs – his view was that the company was no longer focusing on its real priorities.”

This criticism clearly would not apply to dementia charities, where inclusion of disabled members of society would be invariably an aim of any reasonable dementia charity. But the point holds: that the ‘market’ is sensitive to a company’s ethical credentials these days. For example, a dementia charity which solely concentrated on genomic ‘big data’ might not have as much competitive advantage with the general public. And the ‘dementia friendly community’ is an effective way of returning value to members of the general public, in the absence currently of disease-modifying drugs or cures for Alzheimer’s disease and the other two hundred causes (at least) of a dementia.

It is not of course accidental that Andrea Ponti from JP Morgan was there at #G8dementia. Corporates behaving well is big business. It would be easy to dismiss what they can bring to the table, that is somehow raise the profile of dementia. The tragedy of course would be if diversion of resources acted to the detriment of actual patient-centred care so desperately needed at the moment.

Dementia friendly communities: how creating shared value became so important in English policy

Shibley Rahman 0 Comments

There is a strong sense from the National Dementia Strategy (2009) of the need for individuals living well with dementia to be part of a wider network which creates higher shared value. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services There is, however, a growing realisation that many settings are not in fact “dementia friendly”. In the Department of Health’s “Improving care for people with dementia”, it is described that a quarter of hospital beds are occupied by people with dementia. To improve health and care services for people with dementia, by March 2013 the current English policy is committed  asking every hospital in England to commit to becoming dementia-friendly. Indeed, the UK Government reported in “Improving care for people with dementia”, on the UK government website 25 March 2013 that ‘dementia friendly communities’ are a key priority.

It is argued that it will take time for communities to become truly dementia friendly. Groups in over 20 areas, that have now committed to working towards becoming dementia friendly villages, towns and cities. As we develop a process and criteria for developing dementia friendly communities we expect this number to grow. For example, at the time of writing, thirty new members have signed up to the Dementia Action Alliance (DAA), taking the number of bodies and organisations to over hundred.  Each organisation has produced an action plan on what they will do to become more dementia friendly. The DAA is a membership body committed to transforming the quality of life of people living with dementia in the UK and the millions of people who care for them.

Context

People with dementia and carers have described seven outcomes that must be met to ensure that they live well with the condition (Dementia Action Alliance).

The history of this “declaration” is summarised thus:

“Working in partnership with the initial signatories, people with dementia and their family carers described seven outcomes they would like to see in their lives. They provide an ambitious and achievable vision of how people with dementia and their families are supported by society. All individuals and organisations, large and small, can play a role in making it a reality.”

The elements are:

  • “I have personal choice and control or influence over decisions about me”
  • “I know that services are designed around me and my needs”
  • “I have support that helps me live my life”
  • “I have the knowledge and know-how to get what I need”
  • “I live in an enabling and supportive environment where I feel valued and understood”

This work, alongside other research on quality of life for people affected by dementia, shows that many issues influence how well people live, from health and social care, to social relationships, engagement in activities, a sense of belonging and of being a valued part of family, community and civic life. Other work also highlights the importance of society and developing age-friendly environments.

Domestic and international context 

The RSA’s “Connected Communities” project describes itself as, “multi-faceted comprising several interrelated research projects, through which we aim to gain a better understanding of the conditions under which a new civic collectivism, or social productivity, may emerge – one that is organic, spontaneous, and bottom-up.”

The WHO “age friendly communities” or “age friendly cities” initiative is also very significant. In 2008, for the first time in history, the majority of the world’s population lived in cities. Urban populations will continue to grow in the future. It is estimated that around 3 out of every five people will live in an urban area by 2030.At the same time, as cities around the world are growing, their residents are growing older. The proportion of the global population aged 60 will double from 11% in 2006 to 22% by 2050. According to WHO, making cities and communities age-friendly is one of the most effective local policy approaches for responding to demographic ageing.

According to WHO:

The physical and social environments are key determinants of whether people can remain healthy, independent and autonomous long into their old age.

Older persons play a crucial role in their communities – they engage in paid or volunteering work, transmit experience and knowledge, and help their families with caring responsibilities. These contributions can only be ensured if they enjoy good health and if societies address their needs. The WHO Age-friendly Environments Programme is an international effort to address the environmental and social factors that contribute to active and healthy ageing. The Programme helps cities and communities become more supportive of older people by addressing their needs across eight dimensions: the built environment, transport, housing, social participation, respect and social inclusion, civic participation and employment, communication, and community support and health services.

This World Health Organisation initiative appears to provide an international network of good practice in these areas and opportunities to connect the growing number of places interested in dementia-friendly communities to this work. For example, it is argued that domestically here in Manchester, long-term involvement of older people in planning the development of the city at urban and neighbourhood levels has improved the physical and environmental access for older people, raising their confidence and empowering them to become involved in decision-making.

Social inclusion is becoming, of course, increasingly achievable through online social networks. Shirley Ayres (2013) argues in a ‘provocation paper’ for Nominet that social exclusion, loneliness, managing health and disabilities, and unemployment are big issues for society generally. The problems for older people can be exacerbated by ill health, significant life changes such as retirement and transitions – which may require moving to supported living – and the death of partners and close friends. Retaining a sense of worth and value, keeping connected to family and friends, and continuing to contribute to society are important considerations in addressing social inclusion.

What is a “dementia friendly community”?

The definition of the word ‘community’ itself is problematic and in this paper we have used it both thematically (e.g. ethnic or spiritual group, specific interest group, club or society) and geographically to reflect the various domains
of people’s lives. People with dementia in this project and in others that members of AESOP Consortium (an organisation that advises local health and social care systems on reform) have been involved with (Local Government Association, 2012) have described a dementia-friendly community as one that enables them to:

  • find their way around and feel safe in their locality/community/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 their social networks so they feel they still belong in the 
community. 


Furthermore, a society or community that acts consciously to ensure that people with dementia (along with all its citizens) are respected, empowered, engaged and embraced into the whole is one that can claim to be, or is becoming, a dementia-friendly community. We have reflected that there are similar movements for communities currently to become generally more ‘age-friendly’, just as more recently they consciously became more ‘child-friendly’ and ‘wheelchair-friendly’. As mentioned in chapter 16, dementia comes within scope of the Equality Act [2010], and this therefore is an important legal consideration now. 


Communities that aspire to become dementia-friendly are likely also to be those that constantly strive to build social capital and community capacity for all their local populations of residents, workers and visitors and, in doing so, value the contribution that each makes. This may be summarised by the phrase ‘an assets-based approach’, that is, one that builds on what people can still do, as opposed to a ‘deficit-model’ that focuses on what people can no longer do and somehow ‘reduces’ them because they cannot contribute to society more fully. Appreciating the whole person – in line with Kitwood’s (1997) development of the notion of personhood – and their valuable individual contribution to the “citizenry” of a place, community or society is
an aim of this project and of the whole of Joseph Rowntree Foundation’s programme of work on dementia and society. 
Community development progresses this aim; civic engagement and increased social capital are its outputs. Mutual gain for everyone is the outcome.

In Europe, Bruges is leading the way in an expanding movement of towns and cities that are championing the dementia-friendly approach, which include Nantes in France and Ansbach in Germany. Bruges’ knotted red handkerchief logo signifying “dementievriendelijkBrugge” (“dementia-friendly Bruges”) is being taken up by other organisations and countries and they welcome others using the logo too, to increase its chances of becoming a universally recognisable emblem.

Where did the concept of “dementia friendly communities”come from?

Growing awareness of the demographic changes in the population as the proportion of older people and the prevalence of dementia increase has prompted research and policy development in both age-friendly and dementia-friendly communities. 
In 2011, the Department of Health convened a ‘Think Tank’ of experts, including people with dementia and family carers, to explore the concept of “dementia-capable communities”. In preparation it commissioned Innovations in Dementia to work with people with dementia to find out what makes a good community for people with dementia to live in and what can be done to make this happen (“Dementia Capable Communities” from “Innovations in Dementia”).

They found that the things that make the most difference are:

  • the physical environment;
  • local facilities;
  • support services;
  • social networks;
  • local groups.

People with dementia suggested that things could be made better by:

  • increasing people’s awareness of dementia;
  • having more local groups for people with dementia and their carers;
  • providing more information, and more accessible information, about local services and facilities;
  • making local facilities more accessible for people with dementia.

Why encourage ‘dementia friendly communities’?

1. The growing numbers of people with dementia

All statutory agencies should be familiar with the public health and demographic changes occurring over the next generation, including a doubling of the numbers of people with dementia over the next 30 years and a shrinking of the working population to support those in later life. By 2019, 38 percent of the population will be aged over 50, and by 2029 this will have risen to 40 percent (Audit Commission, 2008).

2. The economic arguments

In the U.K., the economic climate had
driven significant cuts in public sector spending that have impacted on commissioners’ abilities to fund services adequately or to invest in future service provision. It has also unfortunately coincided with the formation of different health commissioning arrangements; the Clinical Commissioning Groups (CCGs) and the Health and Wellbeing Boards, both still in their transitional infancy, are too new to have had much impact yet. Arguably, the growing elderly population is a source of spending power that has been overlooked in the past in favour of younger people with apparently more cash to spend.

 3. The value of independence and interdependence

The people we met told us that the most distressing part of their illness is that, after a lifetime of autonomy and self-determination, they find themselves having to rely increasingly on others. Even when they recognise that they need help, they are sensitive to
the complexity of nuance and understanding which can be felt on both sides.

4. The wish to remain connected to communities

Highest on the list of difficulties for people with dementia are the everyday community activities that everyone else takes for granted, such as withdrawing money at the bank, paying bills, shopping and using public transport. Trying to carry on daily life as before becomes more difficult and problematic for people. As a result they start to feel disconnected from their old groups, friends, activities and places.

 5. The interconnectedness of community life

Research and anecdotal reports of people’s personal accounts converge on the notion that receiving a diagnosis of dementia is a major life event. Fear and ignorance of dementia among family and friends, as well as the general population, may mean
that others respond negatively. Many report, in addition, reveal a necessity to make new friends, commonly from the dementia community, as they begin to lose friends and connections in their old walks of life.

 6. The need to create inclusive local communities

Older people are fellow citizens who should be able to participate in local communities and benefit from universal services to the same extent as other age groups. Scrutinising local mainstream and universal services through an age-proofing lens benefits not only older people but also many other groups – younger people, families with children, wheelchair users and other disabled groups (Audit Commission, 2008). Older people should have a stake in how universal services such as transport, parks and gardens, refuse collection and leisure services are planned and organised. Finally, through better use of space and the increased use of technology, more older people are able to participate more fully in society. The Independent featured in its reporting the impact of ageing on city life in the future, signalling the growth of environmental gerontology.

 

Why involve individuals with dementia in the design of ‘dementia friendly communities’?

The Local Government Association and ‘Innovations in dementia’ have explained why it is so essential to listen to the views of those individuals with dementia.

The idea of making our communities better places to live for people with dementia is something which engages the enthusiasm and interest of all sorts of people. Traders, leisure companies, transport providers, planners, service providers, health and social care organisations, charities are all potentially affected; all have a role to play in forming a vision about what a dementia-friendly community should look like.

The most important stakeholders in this process of course are people with dementia, and those who care for and support them.

“Nothing about us without us” is a slogan which carries great resonance for disability rights campaigners – and is one which is increasingly being articulated by people with dementia as well. The voices of people with dementia and their carers should be at the start and the heart of the process of creating dementia-friendly communities.

 

What do individuals with dementia appear to want from ‘dementia friendly communities’?

The Local Government Association and ‘Innovations in dementia’ have explained that it is important to listen to the expectations of individuals with dementia in formulating a policy on dementia-friendly communities.

Their findings are shown below.

“People told us about the things which make a difference in a dementia-capable community:

  • the physical environment;
  • local facilities;
  • support services;
  • social networks;
  • local groups.

“People told us that they kept in touch with their local communities”:

  • through local groups;
  • through the use of local facilities;
  • through walking;
  • through the use of support services.

“People told us they had stopped doing some things in their community because: their dementia had progressed and they were worried about their ability to cope they were concerned that people didn’t understand or know about dementia.”

“People told us that they would like to be able to:

  • pursue hobbies and interests;
  • simply go out more;
  • make more use of local facilities;
  • help others in their community by volunteering.”

“People told us that one-to-one informal support was the key to helping them do these things. 
People told us that a community could become more ‘dementia-capable’ by:

  • increasing its awareness of dementia;
  • supporting local groups for people with dementia and carers’
  • providing more information, and more accessible information about local services and facilities;
  • thinking about how local mainstream services and facilities can be made more accessible for people with dementia.”

The Four Cornerstones Model

Crampton, Dean, and Eley (and the Joseph Rowntree Foundation) in a report on building a dementia-friendly community in York present an elegant ‘four cornerstone’ model.

Chapter-17-Figure-1-278x300

Their analysis of previous and parallel work, supported by our findings in York, led us to propose a model for realising a dementia-friendly community. With the voices of people at the heart of the process, it is argued 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?

 

The “socio-economic position”

The “socio economic position” (SEP) refers to the position of individuals in the hierarchy and is inherently unequal, shaping access to resources and every aspect of experience in the home, neighbourhood and workplace (Krieger 2001a; 2001b; Graham 2004; Regidor 2006). Different dimensions of SEP (education, income, occupation, prestige) may influence health through different pathways and so may be more or less relevant to different health outcomes. It is the extent to which SEP involves exposure to psychological (in addition to material) risks and buffers that is of special interest from
a mental health perspective. SEP structures individual and collective experiences of dominance, hierarchy, isolation, support and inclusion. Social position also influences constructs like identity and social status, which impact on wellbeing, for example, through the effects of low self esteem, shame, disrespect and ‘invidious comparison’ (Rogers and Pilgrim 2005; de Botton, 2004). Sen has previously argued that shame and humiliation are key social dimensions of absolute poverty and that the ‘ability to go about without shame’ is a basic capability or freedom (Sen, cited in Zavaleta 2007).

The use of the term psycho-social is important because it highlights the psychological/emotional/ cognitive impact of social factors, the effects of which need to be distinguished from material factors. For example, unemployment that leads to loss of income is not psycho-social, whereas
the loss of self esteem that accompanies unemployment is (Martikainen et al., 2002). Individual psychological resources, for example, confidence, self-efficacy, optimism and connectedness appear embedded within social structures: our position in relation to others at work, at home, and in public spaces. Because social position influences emotion, cognition and behaviour, it is an ongoing challenge to separate out contextual effects (Singh-Manoux and Marmot 2005). Context was first introduced in chapter 9.

An example of making a community “dementia friendly”

Hampshire County Council, ‘Innovations in Dementia’ and the Local Government Association provide a very good example of steps through which a community can be made more ‘dementia friendly’. They cite that memory problems make life difficult, and suggest the following:

  • people who understand about memory problems – this can be people in shops, bus drivers, friends and family or anyone you come into contact with;
  • clear signposting, so people know where they are going and where things are;
  • clearly-written information on things like bus timetables or leaflets about services;
  • being able to spend time with other people in a similar situation;
  • having someone to go with.

 

The benefits of “resilient communities”

A wide range of research demonstrates the health significance of social relationships and both formal and informal social systems as mediators of psychosocial stress resulting, for example, from inequality or economic transition. The relationship is not always clear cut (De Silva et al., 2005, 2007). There are different forms of community cohesion with different effects, in low income countries, for example, or for particular groups where strongly bonded communities may exclude minorities.

Nevertheless, communities with high levels of social capital, indicated by norms of trust, reciprocity, and participation, have advantages for the mental health of individuals, and these characteristics have also been seen as indicators of the mental health or wellbeing of a community (Morgan and Swann 2004; Lehtinen et al., 2005; McKenzie and Harpham 2006). The mental health of communities can be both a risk factor (e.g. the concept of social recession) and a protective factor (e.g. the application of herd immunity to mental health) (Stewart-Brown 2003). Hopelessness and a difficulty in imagining solutions, which are also risk factors for suicidal behaviour, are influenced by both neighbourhood culture and the physical environment.

For individuals, social participation and social support in particular, are associated with reduced risk of common mental health problems and better self reported health. Social isolation is an important risk factor for both deteriorating mental health and suicide (Pevalin, and Rose 2003; Social Exclusion Unit 2004). The key question is, perhaps, the extent to which social capital mediates the effects of material deprivation. Many studies have found that social support and social participation do not mediate these effects (Mohan et al. 2004; Morgan and Swann 2004). A recent ecological study of 23 high and low income countries found no significant association between trust and adult mortality, life expectancy and infant mortality. Rather the results supported the importance of both absolute and relative income distribution (Lindstrom and Lindstrom 2006).

This does not mean that neighbourhood effects are insignificant: we know that indicators of social fragmentation and conflict in communities, as well as high levels of neighbourhood problems influence outcomes independently of socio-economic status (Agyemang et al. 2007; Steptoe
 and Feldman 2001). Mistrust and powerlessness amplify the effect of neighbourhood disorder, making where you live as important for health and wellbeing as personal circumstances (Krueger et al., 2004).

Socially disorganised areas provide a dangerous mix: large numbers of potential offenders who have few opportunities other than crime, many potential victims, and few social organisations or individuals who are capable of protecting others from violence (Krueger et al., 2004). Area level effects may be particularly significant for some causes of mortality: in Scotland, for example, increases in inequalities in mortality are driven by increases in death rates at a young age in areas of high deprivation, for example for liver disease, suicide and assault and mental and behavioural disorders due to drugs (Leyland, 2007).

It may be that negative symptoms of low morale and psycho-social vulnerability in communities, including anxiety, paranoia, aggression, hostility, withdrawal and retreat, have a greater power than protective factors, or, as we saw in relation to resilient places, that material resources outweigh other factors.

 

WEBSITES

 

Dementia Action Alliance, National Dementia Declaration. http://www.dementiaaction.org.uk/who_are_we/national_dementia_declaration

RSA: Connected communities

http://www.thersa.org/action-research-centre/public-services-arts-social-change/connected-communities

Department of Health: The Dementia Challenge Dementia friendly communities

http://dementiachallenge.dh.gov.uk/category/areas-for-action/communities/

WHO Global network of age-friendly cities and communities

http://www.who.int/ageing/age_friendly_cities_network/en/

 

Legislation

Disability Discrimination Act [2005]

http://www.legislation.gov.uk/ukpga/1995/50/contents

Equalities Act [2010]

http://www.legislation.gov.uk/ukpga/2010/15/contents

 

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