equality

Dementia friendly communities and ‘the Big Society’ – my pledge for #NHSChangeDay

Shibley Rahman 0 Comments

If you trawl back ‘through the archives’, it is quite constructive to chart the origins of ‘the Big Society’. Often seen as the policy turkey which never flew, it was the idea that communities could produce measurable outcomes for the benefit of society through voluntary action.

The “Big Society” has had more policy relaunches than either David Cameron nor the Cabinet Policy would like to remember, but many feel it has never been officially laid to rest.

‘Dementia Friends’ saw a multi-million pound initiative, involving the Alzheimer’s Society, for providing information sessions to members of the public. It is in many ways an illustration of the Big Society; and in this particular case, ‘Dementia Friends’ aims to tackle ignorance and prejudice leading to stigma and discrimination. This is indeed a worthy cause.

I myself am a @DementiaFriends ‘champion’, and very proud of it.

“Dementia Friendly Communities” has been a policy construct which has been very popular amongst the Big Charities globally, including the Alzheimer’s Society and Alzheimer’s Australia. Like neoliberalism, globalism by definition knows no territorial bounds; and nor does this policy apparently.

David Willetts MP, often affectionately called “Two Brains” by both fans and political enemies, is known to be an intellectual power house of the Conservative Party. He is thought to have been the “brains” behind much of the private finance initiative thinking of the early 1980s in a policy document for the Social Market Foundation.

In 1994, he proposed a notion of ‘civic conservatism’. It is picked up here in an interview with Caroline Crampton, now of the New Statesman:

“He considers for a long moment, then says: “What does frustrate me is that, in the long years of opposition, it took a long time for the Conservative Party to get to grips with some of this stuff. I think we have now. If you look at the social action projects that the members of the new intake have done, their commitment to their constituencies, their understanding of the importance of the voluntary sector, we’ve made great progress. In politics, you have to be patient.” All the evidence suggests that Willetts is going to have to continue to be patient; there is no guarantee at this stage that his party will win a majority at the next general election, or that, even if it does, his highly intellectual approach to his brief will have delivered enough substantive change to justify his promotion ahead of others.”

The “dementia friendly communities” policy can be served up in whichever way you wish. You can argue it as a perfect vehicle to give the commercial market a slight ‘nudge’, so that ‘dementia friendly’ providers gain competitive advantage by being ‘dementia friendly’. This would benefit both customers and employers, conceivably. It makes sense of the motherhood and apple pie thinking behind providing ‘Dementia Friends’ sessions for the top FTSE100 countries, inter alia, in the current Dementia 2020 policy document (aka ‘The Prime Minister’s Dementia Vision’).

At the other policy end, it is impossible to argue against inclusivity and accessibility. It is impossible for someone like me who is a card-carrying evangelist for personhood to deny that relationships underlie what it is to be a person. Such relationships, often articulated in the hyper cerebral world of ‘relational ethics’, foster solidarity and justice as suggested here.

It is, however, politically interesting why the Big Society has been such a political turkey which never flew. One of the most toxic arguments against it was that it was in fact a cover for cuts. And, despite the Prime Minister’s hyperbolic claim that he wants the UK to be ‘the best place in the world to have dementia’, social care funding is on its knees. I indeed argued this as the King’s Fund when I was kindly asked to appear in their panel session.

on its knees

The rub is social care has not been ringfenced since 2010. It is quite impossible to consider the health and care systems to be divorced from one another, especially when you consider, for example, that cuts in social funding have been directly responsible for delayed discharges from acute hospital care into the community for NHS patients, including frail elderly people living with dementia. That’s what many of us mean by ‘breaking down silos’, for those of us with experience of acute medicine, albeit a long time ago.

“Dementia Friends”, although meritorious, poses a particular problem for people like me who are prone to conspiracy theories. It is, despite its good intention, an elaborate cover for cuts.

Whilst community action is undoubtedly a worthy policy construct for supporting people with all mental health issues, as indeed WISH some years argued, “Transforming lives – enhancing communities“, together with historic initiatives such as WHO ‘age-friendly cities‘, it is one approach. The other approach is to promote the autonomy, dignity and human rights of people living with dementia themselves.

This approach is firmly footed in equality rights and human rights, and in a way is a form of disability activism.  This is not altogether surprising, as I am physically disabled, and dementia is indeed referred to in the guidance for a qualifying condition regarding discrimination in the Equality Act (2010), legislated for by a previous government.

And you will have noticed one thing about a dystopic dementia friendly community, one in which the State is rolled back. Sure, for a dementia friendly community to work, it is perfectly possible to outsource social determinants of health including housing and transport. But likewise, it can be argued that a neoliberal concept of dementia friendly communities, as may or may not be promoted by Big Charity, does not particularly care about access to high quality specialist nursing (such as Admiral nurses) or access to high street justice (such as legal aid cuts and the recently legislated Legal Aid and Sentencing and Punishment of Offenders Act 2012).

But, looking on the bright side, promotion of individual rights is also very much at the heart of independent living (and de-institutionalisation which has been the scourge of mental health policy in England for many decades).

In particular, I should like to commend to you @DementiaBoy, Andy Tysoe, a dementia nurse specialist at the Countess of Chester Hospital, for his important work today for @NHSChangeDay.

So here’s my official NHS pledge: not to allow dementia friendly communities to be a cover for cuts, while supporting the overriding principles of inclusivity, accessibility, solidarity and justice, and “rolling back the State”, but to promote, simultaneously, legal enforceable rights of people with dementia in equality and human rights as legislated for currently in England.

The World Dementia Council will be much stronger from democratic representation from leaders living with dementia

Shibley Rahman 3 Comments

There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself.  You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.

“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.

Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.

I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.

Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.

I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.

I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).

I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.

Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.

My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.

Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.

I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.

I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.

I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.

If no two people are the same, how can we build ‘dementia friendly communities’?

Shibley Rahman 4 Comments

Even identical twins act differently.

This is because they are shaped by the environment in unique ways, even if they have exactly genetic sequence as the blueprint which designed them.

It therefore cannot be any surprise that no two individuals in society are in the same, as you can easily witness with the range of opinions on your timeline on Twitter.

A person with a dementia might be very different to another person with a dementia.

There are a hundred different causes of dementia, tending to affect people in different age groups in distinct ways at different rates? Let’s pick one type of dementia, the most common cause, Alzheimer’s disease.

A 83 year-old with Alzheimer’s disease might have a number of different problems, for example memory – or even with problems in planning, aspects of language, or behaviour.

And of course it’s pretty likely that 83 year-old might be living with another different condition too, such as heart disease.

Your perception of that 83 year-old might vary from your next-door neighbour, according to, perhaps, your own personal experiences of dementia, good, bad or neither.

So, in raising awareness over the uniqueness of individuals through “Dementia Friends” or “Dementia Champions”, there’s an inherent contradiction.

How do we build ‘dementia friendly communities’, given one’s desire to embrace diversity?

I have for some time explained elsewhere why I think the term is a misnomer. I don’t see the point of “asthma friendly communities” or “chronic demyelinating polyneuropathy communities”, worthy though they are.

I think when you pick off any of the ‘protected characteristics’ in the Equality Act, such as ‘disability’, ‘sexual orientation’ or ‘age’, you have to be careful about not inadvertently  homogenising groups of people, worthy though the cause of ensuring that they do not suffer any unfair detriment is.

It could be that people in the early stages of Alzheimer’s disease, due to how the condition tends to affect the brain, could have particularly problems with spatial memory or navigation. Therefore, it would be desirable perhaps to have places with clear landmarks such that such individuals can navigate themselves around.

But take this situation to an extreme. Would society feel comfortable with people with dementia having their own cafés?

The story of Rosa Parks is well known.

After working all day, Parks boarded the Cleveland Avenue bus around 6 p.m., Thursday, December 1, 1955, in downtown Montgomery. She paid her fare and sat in an empty seat in the first row of back seats reserved for blacks in the “coloured” section.

The bus driver moved the “coloured” section sign behind Parks and demanded that four black people give up their seats in the middle section so that the white passengers could sit.

Rosa did not move.

A legitimate learning objective of ‘dementia awareness’ sessions is to think about what a person with dementia might or might not be able to do.

But if we then meet this learning objective, that people with dementia are all unique, we should steer away from stereotypes that people with dementia act ‘a certain way’.

This, I personally believe, is a big failing of this ‘dementia friendly communities awareness video’.

How Can We Include People With Dementia in Our Community? from NEIL Programme on Vimeo.

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

Shibley Rahman 7 Comments

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

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

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

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

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

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

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

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

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

social care cuts

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

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

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

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

How should we make communities ‘friendly’ to them?

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

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

persimage

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

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

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

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

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

Likewise, my natural instinct is to think about whether the charity sector is distorted with initiatives such as ‘Dementia Friends’.  According to the Government’s website, by 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England, and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Linking the global policy of dementia friendliness to one charity, when other similar initiatives currently exist (such as the Purple Angels, Joseph Rowntree Foundation, University of Stirling, WHO, and RSA), means that many dementia charities may get unfairly ‘squeezed’.

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

my stall

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

Pharmacy

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

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

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

This poses big problems for our perception of inclusive communities.

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

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

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

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

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

Comments 1

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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.