Tag Archives: RSA

My marketing campaign brainstorming session at the RSA this morning for 'decisions in dementia'.

We were joined by top marketing consultants this morning to advise on our crowdsourcing campaign.

The draft details of my crowdsourcing campaign, to raise awareness of decisions, the importance of decisions in dementia, and how decisions can possibly be influenced, are here on my Kickstarter page.

This campaign is not live yet.

Most marketing strategists will agree that creating customer value is fundamental to both profit-seeking companies and nonprofit organizations.

Indeed, creating superior customer value is a necessary condition for a company securing a niche in a competitive environment, not to mention a leadership position in the market.

A price signal is information conveyed, to consumers and producers, via the price charged for a product or service, thus providing a signal to increase supply and/or decrease demand for the priced item.

A large focus of our discussions was ‘market segmentation’.

Market segmentation is a marketing strategy that involves dividing a broad target market into subsets of “targets” who have common needs and priorities, and then designing and implementing strategies to target them.

Market segmentation strategies may be used to identify the target “backers”, and provide supporting data for positioning to achieve a marketing plan objective.

As a result, I might develop product differentiation strategy, so that the website I am designing fulfils diverse needs, such as for people with early dementia, journalists or NHS commissioners.

One of the leading consultants advised that for my particular project, and this is a difficulty any product-oriented kickstarting campaign, that “content is King”.

He advised me that a big problem with my pitch is that the figures asked for seemed very ‘budget’. I think, in fairness, he was concerned about my project looking too “bargain basement”.

Too cheap or too expensive can both be off-putting.

We’ve been advised to maximise use of all marketing channels, and to synchronise properly rewards to the different market segments.

This all seems very sensible.

But it’s all the same very exciting.

I hope to get hold of the makers of this short animation, based in Serbia, I think so that they can make a short animation on the importance of decisions for people living with dementia (for a stated revised budgetary cost of my output of crowdfunding campaign.)

This is by the way how I intend to maximise use of marketing channels (some details redacted.)

to publish

to publish

to publish

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A proposed use of @theRSA's "Steer" for a behavioural change for dementia friendly communities

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

For example:

Many thanks already for these other kind remarks on Twitter:

Anyway here it is.

Introduction

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

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

A problem with disengagement

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

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

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

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

This is an extract from Kate’s blog.

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

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

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

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

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

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

A growing democratic deficit with persons with early dementia?

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

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

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

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

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

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

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

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

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

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

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

Dementia friendly communities cannot simply be about ‘Nudge’

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

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

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

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

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

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw, we would arrange our own activities not led by someone who thinks they know what we want! 
no one leaves till they are collected, could it be so easy, there are 1000′s of empty buildings in every major city in the uk .”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These are:

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

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

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

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

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

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

The power of the internet and solidarity

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

Solidarity is a key aspect of such collaborative networks.

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

As Sarah Ammed puts it:

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

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

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

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

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

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

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

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

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

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

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

Conclusion: a ‘power to create’ something unique

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

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

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

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

References

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Chris Roberts' plan to set up a dementia café: persons with dementia driving decision-making

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.

Brixham

Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:

Section

And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:

comments

When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.

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

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.

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

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

 

REFERENCES

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Audit Commission (2008) Don’t stop me now: Preparing for an ageing population. Available at: http://www.cpa.org.uk/cpa/Dont_Stop_Me_Now.pdf.

Ayres, S. for the Nominet Trust (2013) Can online innovations enhance social care? http://www.nominettrust.org.uk/sites/default/files/Enhancing%20social%20care_PP_0113.pdf

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