Home » Dementia friendly communities
A prism of view of ‘dementia’ which is binary does not do anyone any favours
People like to make mental shortcuts.
Known as ‘heuristics’, they are convenient tools to save time and energy. For example, when you’re buying a new tablet, you might be really biased towards one which can show photographs in very high resolution.
The word “dementia” itself is a shortcut for people to summarise the fundamental way in which a particular type might share particular characteristics.
This is like an ‘asthmatic’ who gets very short of breath around certain types of tree pollen.
The word “dementia” would not be a problem, if it were not a label, and implied certain negative connotations, made by popular through the media. We all know what these connotations might be: like “time bomb”, “horrific”, “horrible”, “robbing you of your mind”.
But even if you don’t conflate such emotive terms, it’s all too easy to implant as “them” against “us” view. “What’s it like to live with dementia?” However well meant, it sounds patronising.
Well you tell me – “What’s it like to live in Luton?” Living well in Luton might depend on whereabouts in Luton you are, what type of residence in, what your expectation of living in Luton was like. You get the gist.
Increasing the diagnosis rates of dementia implies you confidently can diagnose dementia. But this is not certain – to make a diagnosis of dementia reliably you might have to follow somebody with time to see if there is any decline. As such it might be convenient to “blame” the doctor, such as a GP for “missing it”, but people’s presentation of conditions change all the time.
It not only places faith in our medics, but it places faith in our diagnostic criteria.
For dementia, this faith is misplaced.
Firstly, this endless mixing up of dementia with memory problems. You can be profoundly depressed, with no dementia, with substantial memory problems.
Do you wish an army of ageing people with memory problems to get worried they have missed out on a diagnosis of dementia, given that Jeremy Hunt reminds us nationally we are missing our targets?
It is Hunt who is both missing the target and missing the point.
Quite a lot of dementia is difficult to diagnosis. Somebody may have a specific but identifiable language problem for years, with no problems in memory. This might be a dementia called primary progressive non fluent aphasia, for example.
Somebody with logopenic aphasia dementia might have OK memory but have real problems with memory.
And what if you transplant on your definition of dementia that it has to cause a meaningful impairment (presumably to exclude people with minor cognitive problems).
People who demand a functional impairment for a dementia and encourage people to live well with dementia, such as through memory aids, perception aids, planning aids, and so on, are in a sense having their cake and eating it.
Say you can get in and out of a bath without any problem? Is this something you should wish to emphasise to a disability tribunal whose award might ultimately affect your award for mobility around London using the bus?
Whether we’ve moved on or not will be guided by how frequently I hear the words, “What it’s like to live with dementia?’, as if a person living with dementia is an oddity.
People with younger onset dementia tend to find it hard to grips with the stigma of the world around them knowing they have a dementia at an early age.
But they also tend to be worried that an employer might sack him or her, rather than making reasonable adjustments for this cognitive form of disability. This is in fact what you would DEMAND in employment and equality law.
Dementia friendly communities lets scrupulous employers off the hook too easily, and if anything gives them an opportunity to distinguish themselves in the market for being ‘dementia friendly’. Never mind that that employer would have no qualms in sacking you in your 50s if you developed dementia, saying it was some necessary reconfiguration mumbo jumbo?
Talk is cheap. Embrace my reality. It is not a nice one, but gives a clue as to where we need to go from here.
Persons living well with dementia are not ‘curiosities’. So let’s move on from this.
Quite to my surprise, I found that the ‘Pushme-pullyu’ from “Doctor Dolittle” has its own description in Wikipedia:
A ‘Pushme-pullyu’ was therefore a ‘creature of curiosity’.
A common introduction to a session introducing dementia might be to ask the question, ‘How many of you know a person with dementia?’ About half of the room will put their hands up at this point.
If you change the question to, ‘How many of you know of a person with dementia?’, it is said that the other half of the room will put their hands up.
It must be, by the law of averages, be very likely that you will know of someone with dementia at the very least, as it is though that – conservative estimate klaxon – there are about 800,000 people living with dementia in the UK.
The “dementia friendly communities” plank is an important part of the dementia strategy “tripos”. In fact, it is one of the yardsticks by which the current dementia strategy in England is being judged.
This is, of course, “low hanging fruit”, as the number of dementia friendly communities will have certainly gone up from a figure tending towards zero.
It is impossible to argue AGAINST inclusivity and accessibility, especially since living with dementia has moved in policy terms from a biomedical model to a social one of disability. Therefore, making reasonable adjustments for people living with dementia is utterly commendable, and can be particularly challenging if certain disabilities are ‘invisible’.
But the term itself is problematic: “dementia friendly communities” DOES imply division – that people living with dementia, “the dementia”, are different to us.
There is still a stubborn feeling of stigma and discrimination, by some, towards people who have received a diagnosis of dementia. And part of the solution to that will be addressing bizarre pre-conceptions of what people living with dementia might be like.
But even within any one of the various ‘disease categories’, an individual’s lived experience of dementia will be different. That is the paradox of extrapolating too much from any one person’s experience of living with dementia.
I feel, though, we are still in “dangerous territory”.
I witness all the time people with dementia featuring in events to do with dementia in a tokenistic fashion.
While the organisers and participants of the G7 ‘legacy event’ will vigorously deny that this was a feature of their event, the answer by Dennis Gillings, “World dementia envoy”, whose particular expertise in living well with dementia is quite uncertain, to Helga Rohra, herself living with dementia, did raise eyebrows amongst the cognoscenti of this field.
At the other extreme, it would be nonsense to have no plenary speakers living with dementia in sensitive panel debates on topics to do with dementia. And yet this is exactly what happened in a recent high-profile event on ‘sexuality and dementia’.
But the idea that you’re “smashing preconceptions” about people living with dementia might at first sight seem perfectly laudable, and people should not be in denial, or showing ‘wilful blindness’, of their dodgy preconceptions of what dementia might be. The sinister side of the shock doctrine lying as a bedfellow with commissioning for dementia is that it’s well known private markets thrive on fear.
And why the need for hyperbolic language? It’s a bit like my pushme-pullyu example: the use of ‘shock doctrine’ to make a point. Why are people ‘shocked’ that brain scans might reveal significant atrophy of the cerebral cortex, and yet people can still function and be good fun to be with?
However, the whole approach must be articulated with extreme caution, as an unintended consequence of this approach might be to exacerbate division rather than to encourage inclusivity. And nobody wants this.
“Inclusivity” is a difficult concept. I sometimes balk at the idea of ‘involving people with dementia in assessing our research grants’, in the same way I perhaps ‘involve’ my postman when I take receipt of my mail every morning.
But with the greater high profile of the dementias, we all need to show greater levels of responsibility before we descend into a chaos of slogans.
Loneliness in dementia is an important societal problem, but why is the proposed solution so exclusive?
“The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted, uncared for and deserted by everybody” Mother Theresa
I cannot recommend highly enough this account of loneliness in the context of primary care by Dr Jonathon Tomlinson in his powerful blog ‘A better NHS’.
In this, loneliness is a separable issue from whether a corporate can secure advantage by being ‘dementia friendly': it is an important social construct.
Earlier year in a prominent medical journal, it was reported that feeling lonely rather than being alone is associated with an increased risk of clinical dementia in later life and can be considered a major risk factor that, independently of vascular disease, depression and other confounding factors, deserves clinical attention.
Social care for dementia in the real world, in England, is now on its knees. The reality, as a result of deliberate budget cuts from the current admnistration, is quite gruesome.
The campaign against stigmatising stereotypes of people with dementia is a worldwide one.
And yet Norman Lamb frontloaded a standard shill for the Alzheimer’s Society ‘dementia friendly communities’ programme with an elaborate fictional description recently with an elaborate description of a bed-wetting confused person. Such negative propaganda severely runs the risk of further evaporating goodwill for the Alzheimer’s Society.
Lamb comments, “But dementia can be a cruel condition, both for those who have it and for the people who love and care for them.”
It is hard to know precisely what this ‘shock doctrine’ is supposed to achieve, other than to inject a feeling of fear and moral panic for readers of the Guardian. But the article is an extremely manipulative one. It identifies a really important social issue, but makes no room for discussion for anything other than a discussion of the Alzheimer’s Society and their ‘dementia friendly communities’ programme.
The phrase, “So we need an assault on the twin epidemics of dementia and loneliness”, needs to have a big health warning on it. The number of cases of England for dementia has been falling in the last two decades, according to carefully executed research from Cambridge.
Lamb comments, “One million [dementia friends] are expected to be recruited by 2015.” But who’s doing the expecting? What are the penalties for not reaching this particular target?
“More than 50 cities, towns and villages are already taking local action to become dementia friendly.” But Torbay has been dementia friendly for years, but not on the list of Government-approved dementia friendly communities as it has not participated in the scheme run by the Alzheimer’s Society.
If you’ve been on a ‘Dementia Friends’ course, you can’t tweak it a bit and call it your ‘Dementia Friends’ course (apart from anything else as it is protected by a trademark on the UK register.)
There’s the bind. This exclusivity exists because one more ‘dementia friend’ somewhere is one fewer ‘Dementia Friend’ on the official scheme.
This can’t be called anything else but exclusivity.
So Norman Lamb has used a discussion about isolation in dementia to encourage exclusive behaviour. This makes us a laughing stock in our English dementia policy in the eyes of the rest of the world potentially.
Lamb refers to this scheme thus: “All of this should be just the start, the beginning of a massive social movement.”
But how organic is this ‘massive social movement’? The answer is not at all.
It is known that the £2.4 million programme is funded by the Social Fund and the Department of Health. And an eye-watering amount of money has been spent by Public Health England on this marketing campaign just gone as reported here, also to promote “Dementia Friends”.
Clearly not everyone is benefiting from local commissioning decisions to promote dementia. And these decisions have had a catastrophic effect on social interactions for some people with dementia, under the lifetime of this parliament.
For Norman Lamb to pop up and complain about loneliness in dementia having promoted this policy actively in England would it be like a Tory MP complaining his local law centre had suddenly shut down.
Earlier this year, a popular day care centre for people with dementia was reported as closing down. Staff at Mundy House day care, in Church Road, Basildon, were left devestated. Larchwood, the firm which runs the centre and adjoining residential home, claims the day care facility is not making any money.
Meanwhile, last year, a council was considering plans to close up to seven centres providing specialist care for older people suffering from dementia. East Sussex County Council’s cabinet were reported as set to discuss proposals which could see the closure of a number of centres providing day services for older people in Lewes, Bexhill, Hailsham, Crowborough and Hastings.
And, simultaneously at the other end of the country, a residential care home and day centre for elderly and vulnerable adults look certain to close in a shake-up. Plymouth City Council said Lakeside in Ernesettle and St George’s in Stonehouse were to be shut. The council said it was under financial pressures and numbers using the buildings were dwindling. It admitted that some staff would lose their jobs.
But ‘dementia friendly communities’, regulated by a strict standards protocol, or a badge of ‘Dementia Friends’, encourage exclusivity. Lamb in his article makes no attempt to widen the discussion to other possible means of inclusion.
Here’s a valid approach, for example, involving the social media, from Lee on the popular “Dementia Challengers” platform:
“If you care for a relative with dementia life can seem very isolating. Carers sometimes live in a bubble, the roundabout of caring, sorting out finances, juggling family responsibilities and struggling with the challenge of keeping their relative safe, comfortable and happy. There may be issues such as family members not doing their part, or the carer may also have paid employment, young children or grandchildren to care for, or their own health issues. Many of the carers who contact me express their frustrations at feeling alone and unsupported.”
“Social media can be a great way to find other carers, and there’s a wonderful community on Twitter who support each other, share tips and good practice and lighten the day with comments, photos and light-hearted banter. If you are not already connected to the dementia challengers, I’d recommend you spend some time finding out how to use social media so that you can connect with this group of people. It’s easy to dip in and out of conversations when you have the time, or to use that five minute breather between other responsibilities to catch your breath and talk to someone in the same or a similar situation. Here are some tips about how you can use Twitter and Facebook to engage with other carers.”
And – providing supportive evidence for Lee’s argument – is a tweet by someone with familiarity with a rarer type of dementia, known as “posterior cortical atrophy”.
And, if loneliness is so valued by Norman Lamb and colleagues, shouldn’t funding be flooding in for initiatives such as the Healthy Living Club in Stockwell? The group meets for four hours each week for a programme of activities as a focus for the local community, to promote the mental and physical wellbeing of those people well with dementia. Each meeting is run as a social event, which people attend to meet each other, have a good time and share experiences. The Club is run with a team of volunteers and some sessional contributors, led by a paid co-ordinator. It is seen as a blue-print for future dementia care in the community.
Finally – we do know that David Cameron has genuine problems with the ‘C’ word – that is, “caregivers”. He recently managed to get through an entire answer in Prime Minister’s Questions, on zero-hours contracts, in the care industry without mentioning specifically ‘carers’ or ‘caregivers’. But if they are invisible as the army of millions without whom dementia care in England would implode, would be a big surprise if their loneliness too was completely ignored?
The “Dementia friends” is a good example of standard corporate marketing and cultural techniques
Introduction
On 8 November 2012, it was announced from a Department of Health press release,
“The Dementia Friends scheme is the country’s biggest ever project to change the way people think about dementia.”
In detail,
“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 today and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.Each Dementia Friend will be awarded a forget-me-not badge, to show that they know about dementia. The same forget-me-not symbol will also be used to recognise organisations and communities that are dementia friendly. The Alzheimer’s Society will release more details in the spring about what communities and organisations will need to do to be able to display it.”
The “cultural web”
To help understanding how corporate culture works, the “Cultural Web” came about.
The Cultural Web, developed by Gerry Johnson and Kevan Scholes in 1992, provides an approach for looking at and changing your organization’s culture. Using it, you can expose cultural assumptions and practices, and set to work aligning organizational elements with one another, and with your strategy.
The Cultural Web identifies six interrelated elements that help to make up what Johnson and Scholes call the “paradigm” – the pattern or model – of the work environment. By analysing the factors in each, it is claimed that you can begin to see the bigger picture of your culture: what is working, what isn’t working, and what needs to be changed.
But actually you can easily see how a corporate approach is supporting the methodology of ‘Dementia Friends’. Rather than it being an ‘organic movement’, it is a highly orchestated and organised example of a marketing campaign fitting of any large corporate.
The six elements are:
1. Stories
The past events and people talked about inside and outside the company. Who and what the company chooses to immortalise says a great deal about what it values, and perceives as great behaviour.
“Who decides what is great behaviour” is clearly a thorny issue.
It can be rather judgmental to consider what is a worthy community initiative, and what isn’t. Such an initiative can therefore potentially be incredibly divisive.
One of the vehicles which can be used for this is the “Dementia Friends Awards” ceremony to be held on Tuesday May 20th 2014:
“In March 2012 the Prime Minister issued a national challenge on dementia – one of the key aspects of the challenge is creating dementia-friendly communities. Since then communities, individuals and organisations have all risen to the challenge and made Britain a better place for people with dementia. From local shops to large cities, buses to banks; we have heard so many inspirational stories of people and organisations making changes that help people living with dementia and carers in their communities. To celebrate all the hard work happening, we are holding the first Dementia Friendly Awards, sponsored by Lloyds Banking Group and supported by The Telegraph. The Awards recognise communities, organisations and individuals who have helped to make their area more dementia-friendly. This year the awards were open to entries from England only.”
“Awards ceremonies” form official recognition of the control systems too, as well as producing great marketing around an event.
It might seem rather dubious to ‘pick winners’, in that there will inevitably be ‘disappointed losers’ who do not ‘make the grade’, but the idea is to generate lots of positive publicity for the people involved and the sponsors, as well as for the Alzheimer’s Society obviously.
2. Rituals and Routines
The daily behaviour and actions of people that signal acceptable behaviour. This determines what is expected to happen in given situations, and what is valued by management.
3. Symbols
The visual representations of the company including logos, how plush the offices are, and the formal or informal dress codes.
The new “forget-me-not symbol” was launched on 8 November 2012, “embodying the UK’s social movement on dementia”.
There are certain restrictions on the use of this symbol regarding exclusivity (e.g. whether you’ve done on the course but gone onto wish to do your dementia awareness course without the use of the branding).
It is a monopoly trademark right, as demonstrated in its registration across an excessively high number of intellectual property classes on the UK trademark register.
However, “Dementia Friends”, many at the coalface feel, is a rather contrived movement with so much money being pumped behind it to force it to succeed.
When you enrol onto the “Dementia friends” website, there’s a mechanism by which you can receive your ‘Dementia Friends’ badge:
And the amount of free advertising that MPs can give for this is incredible.
David Cameron MP, Prime Minister, even mentioned a giant forget-me-not emblem lighting up the ‘0’ of ’10’ Downing Street in Prime Minister’s Questions this Wednesday. Frequent name-dropping of this badge occurs in parliament by MPs as free advertising.
“I pay tribute to my right hon. Friend for raising this issue. We have turned the zero on No. 10 into the dementia flower today to help to boost the importance of raising awareness of this issue and of encouraging more people to train as Dementia Friends.”
Such an initiative is great for the current administration which can paper over the cracks and terrible shortfalls in social care for dementia.
And marketing is a wonderful thing.
A lot of money, it seems, has been diverted from frontline care into making this project succeed.
The current Government were known to be pitching for professional marketing of ‘Dementia Friends’ last year. Agencies on the Government’s creative roster attended a briefing with the Health Secretary, Jeremy Hunt, on Wednesday (9 October). The campaign was aimed at promoting the concept of dementia friendship, and it would also encourage people to join Dementia Friends, an initiative run by Alzheimer’s Society to improve public understanding.
It is reported that Public Health England would invest up to £4 million a year until 2014/15 and expects significant additional funding from partnership marketing. “The scale of the challenge demands far greater ubiquity than we alone can fund,” a PHE spokeswoman said. The campaign was due to break in March 2014, with pitches will be held on 7 and 8 November and an agency will be selected by the end of that month.
The idea of celebrity endorsements, of course, is not new. Every day consumers are exposed to thousands of ads. and this will hamper companies to create a unique position and receive attention from consumers. Using celebrities can help companies to create unique ads and engender a positive effect on the attitude and sales intention towards the brand. Celebrity endorsement has been applied for many years. Already in 1979 one in every six commercials used a celebrity and in 2001 that percentage grew to 25%. The usage of celebrity endorsements has increased in the last decades and at the same time also the corresponding cash flows grew. In the year 1996 US companies paid more than 1 billion dollar to celebrity endorsers for endorsement deals and licensing rights.
In the latest video, celebrities star in a new advert to encourage people to become “dementia friends” to help boost volunteering, education and support for the growing number of people with the condition.They join up to sing a classic Beatles song to raise awareness of the isolation felt by those living with Alzheimer’s. The Dementia Friends campaign features Lily Allen, Chris Martin, Eamonn Holmes, Simon Pegg, Paul O’Grady, Sir Terry Pratchett, and many more all singing the track With A Little Help From My Friends.
4. Organisational Structure
This includes both the structure defined by the organisation chart, and the unwritten lines of power and influence that indicate whose contributions are most valued. The Dementia Friendly Communities programme at the Alzheimer’s Society has its Manager.
5. Control Systems
The ways that the organization is controlled. These include financial systems, quality systems, and rewards (including the way they are measured and distributed within the organization.)
In January 2012, it was announced that a man in the early stages of Dementia wants his home town of Torbay in Devon to become “dementia friendly”.
Norman McNamara, a member of Torbay Dementia Action Alliance (TBAA), wants shops and businesses to recognise signs of the condition and to help local customers. In the meantime, he has gone onto build a massive genuine social movement, called the “Purple Angels”.
Their efforts are longstanding. And outstanding.
Here for example is their website:
But on page 10 of the latest missive (update on progress on the Prime Minister’s Dementia Challenge), Torbay does not even make the grade.
This is particularly odd given that here is Norman McNamara even pictured with the Prime Minister:
Norman had said he wanted the resort to back the campaign and eventually advertise it to potential holidaymakers.
Torbay District Council said it supported the idea and could see both the resort and visitors benefiting.
The question here is: what is a relevant standard of a ‘dementia friendly community’?
In the missive cited above, further details are provided:
“Development of a code of practice on dementia friendly communities
Building on the foundation stage of the recognition process, the Alzheimer’s Society has commissioned British Standards Institution (BSI) to develop a code of practice for dementia friendly communities. The ambition is to have 15 communities signed up to the BSI code of practice by March 2015.”
But here having a standard ‘code of practice’ means that commissioners can readily say that their community is ‘dementia friendly’, irrespective of what is actually happening on the ground.
It serves as a lazy tick box mechanism for local commissioners. And people become ‘locked into’ getting tenders from the Alzheimer’s Society. This is clearly unacceptable when there are many serious good innovative social enterprises, and other dementia charities, who are at a big risk of being disenfranchised.
It suits the signatories of that missive to tell Government they are doing a good job on dementia friendly communities.
It allows the current Secretary of State to report to the public (via compliant newspapers), that they are doing a great job on dementia friendly communities, despite any range of fiascos of poor dementia care on the ground such as Winterbourne.
6. Power Structures
The pockets of real power in the company. This may involve one or two key senior executives, a whole group of executives, or even a department. The key is that these people have the greatest amount of influence on decisions, operations, and strategic direction.
Conclusion
A range of techniques from the standard corporate marketing literature has been loyally harnessed to promote a corporate ‘cultural web’ around ‘dementia friendly communities’ from the Alzheimer’s Society. The Alzheimer’s Society, together with the current Government, have been able to secure competitive advantage, even harnessing appropriate use of legal monopolistic intellectual property rights. However, the drawbacks of such a well orchestrated approach is that it has not been able to mute genuine ‘word of mouth’ criticism which is mounting everyday over this policy on the social media. In light of the recent targets culture in the NHS, some experienced people have been publicly opining whether “Dementia Friends” is in fact hitting the target but in fact missing a point in genuine organic development of dementia friendly communities. It has become a vehicle being used primarily to promote this Government (Department of Health and Secretary of State), the Alzheimer’s Society, marketing companies, sponsoring corporates, and some celebrities, in as much as, or even much more, than persons with dementia or even the million-or-so army of unpaid caregivers.
@KateSwaffer’s excellent abstract on her personal experience of living well with dementia
For me, it’s not just marketing shill about ‘putting people with dementia at the heart of communities’.
It’s about going WAY BEYOND THAT.
It’s about real action.
This is Kate Swaffer’s excellent abstract from #ADI2014
It’s time we talked about ‘dementia friendly communities’
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 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.
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.
And it is very difficult to deny that initiatives such are this are truly wonderful.
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:
@SDenegri “i’m not sure I know what dementia friendly communities are. I’m not sure I even like the term” #SDCRN
— shibley (@legalaware) March 24, 2014
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.
@legalaware so many disability or dementia friendly ideas are also opportunities for inclusion. pic.twitter.com/72ugSoItGl
— Alastair Somerville (@Acuity_Design) March 27, 2014
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.
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?
“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
“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)]:
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:
@legalaware @shirleyayres @julianstodd cold they be memory friendly networks? Never like defining ppl by diagnosis
— Alastair Somerville (@Acuity_Design) March 18, 2014
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.
@legalaware @julianstodd I agree interesting to see how apps like @Streetclub @streetlife_uk & @SocialMirrorApp are connecting communities
— Shirley Ayres (@shirleyayres) March 18, 2014
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
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:
@elaineahpmh Wonderful blog from @legalaware http://t.co/bMUIsro7oc essential reading for #physiotalk tonight, thx shibley.
— sue parroy (@thehealthmaze) March 17, 2014
Many thanks already for these other kind remarks on Twitter:
@SHensonAmphlett @legalaware @dementia_2014 @mason4233 excellent, inspiring article 
— Pam Luckock (@luckockp) March 16, 2014
Fantastic & thought provoking article by @legalaware – Empower people with early dementia to lead: http://t.co/5wabLxC3KC via @dementia_2014
— SuzieHenson-Amphlett (@SHensonAmphlett) March 16, 2014
@legalaware @thersa @dementia_2014 it’s a very useful & thought provoking take on strengths of those with dementia – one for work Monday!
— Brian Grady (@WBC_BGrady) March 15, 2014
@dementia_2014 brilliant post. Thank you x
— Rosemary (@CarerWatch) March 16, 2014
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
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’?
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.
