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Pass the baton. Dementia friendly communities need to be accommodated within English dementia care.

 

In some parts of the country, service provision, within the NHS and social care, and between primary and secondary care, is being re-designed. The aim is to focus on better outcomes for clinical care, so that a person can live as well as possible independently in the community, but have essential access to acute services as or when required.

Only last week, the British Geriatrics Society and the Royal College of General Practitioners showcased some outstanding concrete examples of integrated care for older people living with frailty. I feel that the themes of their analysis, and real examples, resonate with some of the themes in my own thesis on enhancing health and wellbeing in dementia using a person-centred integrated care approach. Bear in mind neither of us had no idea what the fruits of our labour were!

To promote the best quality of life and care, you really need a handle on the best quality of evidence from here and around the world, and be willing to create some of the research of best practice yourself. There are some ‘enduring themes’, like the complexity of the real conditions of real people, often numbering quite a few – not just ‘frailty’ or ‘dementia’, requiring effective communication between various disciplines and good care planning. Knowing how to transition from living with a condition to preparing for a good death through palliative and end of life approaches is important.

If you look at the finalists for this year’s Alzheimer’s Society 2016 dementia friendly community awards, you’ll see great examples of dementia being local priority. The aim is clearly to make the community more ‘dementia friendly’, including for example local businesses, reminiscence clubs or arts or theatre. I indeed discuss this approach in the new book under the construct of ‘promoting wellbeing’, a pivotal clause in the Care Act (2014) (s.1(1)).

This for me is one of the greatest historical ‘strengths’ of the dementia friendly communities approach. Using such vehicles, there can be greater understanding of what the particular needs and expectations of people living in the community might be. And underlying this is a much improved practical knowledge of what dementia is, facilitated through ‘Dementia Friends’ from the Alzheimer’s Society.

There is much to celebrate here in this approach. We should easily wish to build on these initial first steps by widening such projects so that they are not just ‘dementia friendly’ but (all) ‘inclusive environments’ or ‘accessible environments’ in keeping with a rights-based approach. I talked about the need for such an approach as far back as March 2014 on this very blog.

It is clear from the 2020 Dementia Implementation Plan that ‘dementia friends champions’ are to be given support in rights based approaches, and organisations as diverse as ADASS and the civil service (as well as high street brands), will further ‘roll out’ DementiaFriends. We need to build on this initial success such that it benefits health and social care providers, not just these parties and the Alzheimer’s Society, in embedding a human rights based approach throughout the health and social care system. That way, health and social care professionals and practitioners, and regulators, can all be focused on abuses of human rights, including all too frequent examples of neglect and abuse. The lack of ‘caring well’ in the Dementia Intelligence Network sticks out like a sore thumb, and a bit of let down for great organisations such a TIDE carers, and those trying to promote clinical specialist nursing care, respite care or domiciliary care.

On p.16 of this implementation plan “Prime Minister’s Challenge on Dementia 2020”, the delivery plan target is cited as,

All health and social care organisations over time recognise dementia friendly communities and the benefit of them and sign post people affected by dementia to their local dementia friendly community“.

And it is indeed telling that there are no finalists showcasing best practice in integrated person-centred care in a health or social care institution in the 2016 Alzheimer’s Society Dementia Friendly Communities finalists list, but with funding for the NHS and social care having been driven to breaking point from the current Government in the last few years this is not altogether surprising.

In ‘Dementia Friendly Communities v. 2.0’, it would be a positive thing for professionals in acute hospitals, for example, to be able to see adequately staffed wards with no rota gaps, where there is not  rapidly turnover of burnt out staff, where patients are not abandoned onto ‘outlier wards’, i.e. the opposite of ‘person centred care’.  The acute hospital, where many people with dementia can end up for medical treatment at some stage, arguably needs to be ‘dementia friendly’ too, but not necessarily badged up by the Alzheimer’s Society (for which the BSI accreditation scheme might not be ideally placed to reward in any case.)

And this is where indeed the Alzheimer’s Society does need to improve vastly in its ability to ‘let go’ to allow others space in providing care. There is a huge demand for specialist nurses, including Dementia UK’s Admiral nurses, in offering high quality dementia services, such as caring for the carers, palliative and end of life care, support, training, and advocacy, which simply cannot be met by people trained to a lower level of expertise, including Dementia Advisers and Dementia Friends. It is ubiquitously accepted that Dementia Friends do not offer the appropriate level of expertise needed to deliver high quality of care in settings such as hospitals and hospices. Furthermore, as Admiral nurses work across various settings and share a ‘common vocabulary’, they are ideally placed to ensure cost-effective continuity of care, delivering outcomes such as avoiding hospital admissions or transfer to residential settings.

Some of the emphasis needs to be changed also for ‘dementia friendly communities 2.0’ away from strong marketing of the Alzheimer’s Society and high street brands in offering competitive advantage. Just because a business claims to be ‘dementia friendly’ and seeking enhanced profit doesn’t always mean it offers a better customer experience for a person with dementia nor family member.

I feel in dementia friendly communities 2.0 there needs to be a shift  away from consumerism promoted somewhat mischievously (and fraudulently sometimes) as ‘choice and control’, and more towards better quality human relationships between people. This is ironically in keeping with the original Philip Blond formulation of the ‘big society’ under which climate dementia friendly communities emerged so easily under a Tory government. This thing called ‘social health‘ can mitigate against the profound lack of social inclusion which can accompany a diagnosis of dementia. And indeed it is even hypothesised that better social health in networks of people might even be beneficial in preventing decline or further progression of dementia. This is interesting, and of course pivotal to the World Health Organization’s plans for community based rehabilitation and ‘sustainable development goals’.

I think we need to open up the market much wider than the Alzheimer’s Society to develop ‘inclusive environments’ . People need to ‘walk the walk’ when it comes to collaboration. We should thank the Alzheimer’s Society for their brilliant work, but it is clear that this needs to be developed to a much higher level with much greater leadership from people with dementia (and not merely ‘involvement’). But the NHS, social care, and other third sector organisations clearly have an important rôle now, in the baton being passed on from the excellent and outstanding Alzheimer’s Society. This is urgent and essential for the approach in England to be harmonised with the rest of the world, including Alzheimer’s Disease International and Dementia Alliance International.

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The wolf in sheep’s clothing of ‘dementia friendly communities’

I was asked the other day to give feedback for work stream 7 of the EU Joint Action against Dementia – this is on ‘dementia friendly communities’.

Don’t get me wrong. There are some really interesting initiatives done in the name of ‘dementia friendliness’, and where I think it works is where there’s a strong sense of community buy-in, such as for dementia friendly clergy.

I also think dementia friendly pubs are great. After all, some regulars in pubs have been going to their local for years, and other drinkers might be introduced to dementia for the first time that way. Dementia friendly swimming is also fun.

But this is where the slippery slope begins. Around the beginning of the Coalition Government 2010 with David Cameron as Prime Minister, the idea of the Big Society was floated.

While the precise articulation of the Big Society remained poor, apart from being vigorously proponent by a new model army of advocates such as Lord Nat Wei, there was rumbling beneath the substratum the idea of communitarianism and the work of Philip Blond at the think tank Respublica.

Within this formulation, the idea was replacing bonds or social contracts between a monopolistic state (such as in health and social care services) would be much stronger bonds between citizens themselves as they could produce calls to action in campaigning for change.

What we have ended up with from the Prime Minister Dementia Challenge is a complete disregard for social care. This is even witnessed in the current reincarnation of policy in England, not even a strategy but a piecemeal ‘implementation plan’, built around the Dementia Intelligence Network which misses out ‘caring well’ altogether.

There’s also the aspect that ‘dementia friendliness’ is used by some blatantly as marketing advantage whether they’re actually inclusive of all consumers or not – whether this be supermarkets, banks, or other high street leading brands. Again, this is totally ideologically driven, being part of the ‘behavioural insights’ or ‘nudge’ approach of the Cameron government.

I feel we have a far from plural third sector in dementia, following the strong public-private arrangement between the Government and the Alzheimer’s Society, which has meant that in some areas the Alzheimer’s Society behave almost monopolistically.

This is seen in the ‘accreditation’ of dementia friendly communities. One can immediately agree with the need for some consensus about what a dementia friendly community might be but one can legitimately argue whether dementia friendly communities should in effect be turned into brand ambassadors for the Alzheimer’s Society.

And it could be unfortunate timing – like with the Big Society. But sweeping cuts (including savage social care cuts) effectively a political and ideological austerity, the Big Society, and ‘dementia friendliness’ are a toxic mix.

Despite some initial attempts at keeping ‘Dementia Friends’ at arm’s length with the Alzheimer’s Society, it is quite unclear why their numbers seemed to accelerate around the deadline for them needing to reach their million. Cynics argue it’s got something to do with the online mechanism of becoming a Dementia Friend, or suddenly opening up membership to Scotland. There’s never been a report on the qualitative success of Dementia Friends in reversing stigma or prejudices in dementia, and yet the idea for this programme can be easily seen in the only English dementia strategy to date – 2009 “Living well with dementia”.

And again, despite the Alzheimer’s Society categorically saying otherwise, many Dementia Friend Champions have become unwittingly become brand representatives for the Alzheimer’s Society.

I frankly think this is disgusting. Anyone who is not involved with the Alzheimer’s Society, or the Dementia Action Alliance organised closely with the Alzheimer’s Society, can find themselves very easily disenfranchised, whether this is on local advocacy services, respite care or clinical specialist nurses.

I was even told at the weekend that another Doctor had no money to pay for staff training on dementia, at a substantially much higher level than ‘Dementia Friends’, because all the money had been spent on renovating their wards with a lick of paint in the name of “dementia friendliness” and the low hanging fruit of ‘innovative leadership’.

In many areas of the country, despite great initiatives, dementia friendly communities have been the vehicle for a relentless power grab by the Alzheimer’s Society, albeit I am sure that this was not intended at all by the Alzheimer’s Society, the national clinical lead, or Jeremy Hunt.

And this has been legitimised by a superficial tokenistic air of “engagement”. Almost daily appearances by broadly the same advocates have not particularly advanced policy – for example delayed discharges are at sky high, and the state of domiciliary care is at a parlour state. There are some fantastic campaigners, however, and I don’t wish to clump them in this genuine criticism – I do believe strongly in including all voices in the room, including senior social workers and medics too – in the genuine spirit of co-production.

The term ‘dementia friendly community’ is a farce. Nobody knows how big a ‘community’ is, the word ‘friendly’ has more than a whiff of ‘does he take sugar?’ promoting a sense of homogeneous underclass, and ‘dementia’ embraces about two hundred different conditions where living with comorbidity and complexity is the norm and not the exception.

It is absolutely impossible to object against communities which are inclusive and accessible to all – it is in fact a legal right.

Now is the time for a genuine conversation led by people with dementia on human rights and the UN Convention on Rights of Persons with Disabilities – I feel this is  now not only essential but also urgent.

I hope like our foreign policy on Libya, or on the economic policies which have produced astronomic national debt, or the policy which has produced universal underfunding of NHS Trusts, or the diabolical policy on grammar schools, dementia friendly communities can have a re-think, along with a comprehensive review of the health of the charity sector in dementia. Monopolistic behaviour is not good for consumer choice in any sector.

 

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The Autumn Statement will do nothing for dementia. Oh what a surprise.

With Wendy Mitchell being refused personal independent payment despite living with dementia and needing support for independent living, we can take announcements on universal credit with a large dose of salt. And the housing revolution has not exactly happened since the mass sale of council houses in another whirlwind revolution.

So – I want to break something to you gently.

Big Charity won’t ‘fix dementia’.

I know that people will refer to their interaction with Big Charity as liberating and helping them ‘to get their life back’, but the narrative of Big Charity has been articulately painted to lull you into a fraudulent sense of complacency.

Since 2012, the Prime Minister’s Dementia Challenge, the same Prime Minister who has helped to bequeath you astronomic national debt, a #Brexit which will cost billions and a foreign policy in disarray, made absolutely no effort to include social care.

Now, care homes which have been described as “good” by the Care Quality Commission can be pretty diabolical. A third of nursing homes don’t do special provision for people with dementia’s complex needs, and many local authorities say they can’t cope with providing social support for people needing care at home.

This is absolutely no surprise from a narrative which has relentlessly pursued an agenda of a ‘Small State’ offering jam tomorrow, or a cure by 2025 which is only nine years away now. Every month or so, there is another new breakthrough, or another drug failing at phase 3 trial level. But a piecemeal therapy might come – and hope is important. But false hope is cruel.

Big Charity have been successful in campaigning for closing the ‘diagnosis gap’, with gongs to boot, but we still don’t have a handle on quite how many people have been wrongly diagnosed with dementia, particularly during that period when NHS England financially ‘incentivised’ testing for dementia.

Big Charity for dementia is not “just about managing”. In fact, they’ve never had it so good.

Every misdiagnosis is a tragedy, and yet there is been no outcry over this. There has hardly been an outcry in a call for a public enquiry into the Orchid View care home deaths attributable to neglect. This is apparently not how our society works, as long as we conclude every article in a newspaper with a trite ‘here’s how you contact the Alzheimer’s Society, and you become a Dementia Friend’.

This narrative has been built up to treat social care as an irrelevance. This fantasy is of course shattered once somebody finds she cannot go to work any more because her parent has progressed Alzheimer’s disease and needs round the clock care. For some reason, economists tend not to draw attention to the opportunity cost of unpaid carers deprived of doing any other job for the economy.

It also treats the NHS as a complete irrelevance to people with dementia, but people with dementia are deserving of having their physical and mental health needs like anyone else. A lot of acute care goes into looking after people with dementia, including falls, sensory impairment, infections, incontinence, and yet there is no narrative on enhancing health for people with dementia – only a ‘fight for a cure’ for the last few years.

The whole thing quite frankly is a disgrace. But the skill of Big Charity is always to shift the goalposts as if their interest in dementia is one giant marketing and PR programme. Slick ads don’t get around the issue of a NHS and social care system at breaking point, and a complete disrespect for professionals at sky high level.

Dementia does not exist for the benefit of Big Charity or for others to “print money” from grants. Shocking but true. Big Charity have helped to contribute to a society where the UK wants to compete with Donald Trump for the lowest corporation tax rates in the universe. Philip Hammond MP, safe pair of hands who was Chief Secretary to the equally disastrous George Osborne MP, intends to raise the living wage, but have the consequences on the care sector been thought through?

We are encouraged to care more about offshore multinationals able to squirrel away their tax abroad, “investing in the UK”, or the profit margin of companies, than a system which can care for older people, many of whom who have dementia, properly.

Enhancing health and wellbeing of people with dementia, and carers, needs action not words. It needs to go more than ‘giving people a voice’, important though that is, and “giving people a life back”. It has to go far beyond carefully worded soundbites. For example, Big Charity now wants to talk about “people affected by dementia” in a wish to clump people with dementia and carers together. But they are not the same. They have complementary but different rights. For example, Truffle the Cat’s right to kill a mouse is not the same as that mouse’s right to life.

The Autumn Statement at lunchtime will do nothing for dementia. But in this small state liberal Big Charity Society, this should come as no surprise. You only have nine years to wait for a cure anyway.

 

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As people are complex, it is not a surprise that the environment supporting them is complex

Chris Roberts will be the first person – and not the last – to tell you that once you’ve met a person with dementia you’ve met one person with dementia.

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Everyone has unique experiences. I liken it to all of us, including academics, blindfolded trying to recognise an elephant from part of its body.

the elephant

This morning, I was struck by a new initiative entitled ‘Standing up 4 sitting down’ from Anchor Trust. It was heavily trailed on the breakfast TV and radio as I made breakfast for mum.

Standing Up 4 Sitting Down (#su4sd) is a new national initiative aiming to improve people’s access to their local shops and high street by increasing the amount of seating available to those who need it.  For this reason, Standing Up 4 Sitting Down (#su4sd) is calling on retailers and high streets to do their bit to improve the lives of people by providing adequate seating in stores and public spaces.

It’s the sort of idea which makes intuitive sense, but which some people might never think of however many hours they sit in their office.

Once in a while, you need to get out of your office.

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It’s awkward, but we have to talk about it. Despite all the talk of being united in fighting against dementia, some are impressively unimpressive at working together with people. It is all too easy for certain providers to abuse a dominant position to get ‘market share’ of providing services, particularly if they secure government backing. This is of course a disaster for plurality.

This means that charities are branded in their unique line on ‘dementia’, whether it’s basic awareness or line in training. Too often I’ve seen the 1-2 manoeuvre where X sets up a campaign to ask Government for Y, a secret deal is done, then X secure publicly secures something from Y, and everyone’s a winner.

Culture is so important. Fran O’Hara and Pam Luckock don’t ‘dominate’ in the ‘meet up’ at Llandudno, but they are, whisper it, a critical part.

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But real life is not at all like that. You can only understate dementia’s complexity at your peril, and because of the complexity of people with dementia and the caring relationship the environment for people with dementia needs to be complex, and actually adaptive to changing needs. Above all, it has to have resources in the right place.

The pain of all this is the we’ve known what’s not been right for ages. I can flag up policy reports from the 1990s demanding that it’s the right time for care planning, care coordination, and breaking down the barriers between health and social care.

But who is listening?

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The problem with “person-centred integrated care” is that unless you’re very careful you can get totally engulfed in slogans. If, for example, one of the main disabilities from your dementia is not being able to hear people in a loud room, or have problems in higher order visual processing, talk of the machinery of care in national policy documents may not be your top priority. But, if supported, you can raise it to the top of the agenda like Agnes Houston did.

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Nonetheless, people in policy still make mistakes. I remain aghast at the woeful omission of ‘caring well’ in the Department of Health 2020 implementation plan. “Real people” are needed to fill in the gaps too.

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Take, for example, my example of extra seating for shoppers from Anchor Trust. This could have been easily branded “dementia friendly seating”, or such like, but think for a moment of the horrific unintended consequences as you take your seat on the ‘bandwagon of acceptance’. It’s very rare for someone to live only with dementia – a person with dementia is likely to live with a number of (interacting) conditions.

A “dementia friendly seating” initiative, along with branded leaflets on a small nearby table, would mean that in a shop people with dementia would out themselves and become immediately labelled by their diagnosis if they took up the offer of extra seating in a shop. But at least they could read more about dementia when all they wanted to do was to do a bit of shopping.

And there’s no particular reason why this should be a ‘dementia only offer’. Many people for all sorts of reasons have mobility problems.

I learnt as I came to concluding the manuscript of my third book on dementia on integrated care that you can never underestimate the power of the system to confirm their bias in producing the system most convenient for the system and not for patients/service users. There are some people who are totally genuine, and who carry on with dignity.

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And the people in research aren’t necessarily highly virtuous either. I’ve often recently only understood the purpose of papers in dementia from reading the list of conflicts of interests at the end (early diagnosis, pre-dementia and cognitive frailty being the new holy grail for snake oil salesmen). Researchers can too often fall into the trap of defending their own obsessions, and this can mean a truly magnificent consolidation of certain types of language, e.g. wandering, challenging behaviours. But you have to be a brave soul to be the exception making a stand.

In case you were wondering, I was of course invited to Llandudno for the second annual event in beautiful North Wales where all people are indeed invited to contribute to how dementia services would be better. I went last year. The atmosphere was brilliant. People there weren’t showing off. There was no aggressive oneupmanship. Yes, who’d have thunk it. People there were nice.

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I brought along my books, but I didn’t show them to anyone. I chickened out.

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And I think commissioners, who are real people, also do need to speak to academics, who are real people, as well as practitioners/professionals, who are real people, as well as carers, who are real people, and leads in social enterprises, who are real people, and of course people with dementia, who are real people too.

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It really isn’t rocket science (nor does it need a CQUIN) to value carers.

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It’s often called ‘who’s in the room’ – part of the problem has been people excluded by not being invited (same old speakers, same old chumocracy, same old mailing list, same old exorbitant entrance fee, same failed solutions).

The problem is that this chumocracy is quite incapable of seeing the wood from the trees. Ideas when they arise organically can be unbelievably rich.

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Prof Edgar Cahn, for me the father of “co-production”, used to liken it to having a road map where half of the route was deliberately obliterated making it impossible for you to find your destination.

Co-production is not a series of manuals, or a certificate. Patient option or experience is not a product of a product. All of this is an ethos, and you either have it or you haven’t.

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This event next week deserves every success – and of course I have nothing other than admiration for it.

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Fix dementia care by petitions? Stop the world, I want to get off!

Power, as British philosopher Bertrand Russell defined it, is simply “the ability to produce intended effects.”

It is perhaps not surprising that in the era of Donald Trump and Brexit, with talk of walls being erected between US and Mexico, and talk of £350,000 going to the NHS per week, Oxford Dictionaries has declared “post-truth” to be its international word of the year.

Defined by the dictionary as an adjective “relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief”, editors said that use of the term “post-truth” had increased by around 2,000% in 2016 compared to last year.

Similarly, it seems to have affected a perception of social care. Vic Rayner, Executive Director of the National Care Forum, tackled the issue in a recent blogpost, and Simon Bottery, Director of Policy and External Affairs at Independent Age, has even considered whether social care is the lemur of the health and social care ecosystem.

You cannot fault Jeremy Hughes for launching the notion that you could go a long way to solving the crisis in domiciliary care training by a single petition. The well known chief executive of the Alzheimer’s Society is certainly big box office when it comes to campaigning for dementia. There are few people who’d be able to front a campaign in home care.

The Alzheimer’s Society proposes, “Homecare is failing people with dementia. Alzheimer’s Society is calling for the public to sign their petition and call on the Government to fix a broken homecare system.”

Jeremy Hughes correctly in my view says, “There is simply not enough money invested in the social care system. Homecare workers are crying out for more dementia training – without it their hands are tied behind their backs. From the scandals we have exposed, it is clear they are not fairly or adequately equipped with the skills they need to support vulnerable people with complex needs. ”

But it would be completely wrong to levy all the blame at the door of Big Charity for why dementia had not been ‘fixed’ by now, particularly having spent millions on the ‘Dementia Friends’ campaign?

In this post truth era, Jeremy Hunt MP, the longest serving Secretary of State for Health ever, who has presided in the deepest dissatisfaction in the NHS from its junior staff ever, has been quite insistent that more money spent investing on health and social care doesn’t necessarily mean better quality. Yeahhhhhh rightttt.

The picture which emerges from the recent King’s Fund report on social care for older people makes dire reading.

“Low levels of pay, training and skills of care staff – 37 per cent have no recognised qualification – and increasing difficulties in recruitment raise worries about the quality of care, at a time when the acuity of people’s needs in all care settings is rising. The former Chancellor’s announcement in the 2015 Spending Review and Autumn Statement of a new National Living Wage has been welcomed but will add at least £2 billion to workforce costs by 2020. This has triggered fresh concerns about the financial viability of many care providers after several years in which fees from local authorities have been frozen. Already some of the largest providers of home care have withdrawn from the market (LaingBuisson 2016).”

But hold on a mo. Jeremy Hughes might be onto something here with the use of petitions.

The internet has changed the world for many of us, and charities are no exception. The past decade has seen the third sector is beginning to utilise the internet’s potential, but there might be some way to go still. The great advantages of e-campaigning are speed and cost.

The use of the petition illustrates well the difference in approaches between ‘old power’ and ‘new power’. “New power models” are enabled by peer coordination and close network ties and rely on full engagement and participation. “Old power” is enabled by what people or organisations own, know, or control that nobody else does—once old power models lose that, they lose their advantage. In a nutshell, “new power” is open, participatory, and peerdriven.

In a special issue of “MIS Quarterly” in June 2016 on ICT and societal challenges, Miranda, Young and Yetgin considered whether social media was truly emancipatory.

They moot,

“Our research objective is to understand how and to what extent digital mass media are emancipatory (i.e., permitting widespread participation in public discourse and surfacing of diverse perspectives) versus hegemonic (i.e., contributing to ideological control by a few).”

In a wide-ranging article, they discuss:

“A frame “is a device for organizing material that emphasizes some aspects of an issue…and downplays or ignores others” (Fredin 2001, p. 269). Frames “help people understand complex issues” (Soule 2009, p. 42), but also bias their perspectives to align with those of framers, who accentuate certain information and de-emphasize other (Benford and Snow 2000).”

An issue with framing the ills of domiciliary care with a petition focused on training is that it diverts attention from years of deliberate, chronic underfunding of the current Government. We should all like the Alzheimer’s Society to be confident enough to speak truth to power, if they are sincerely campaigning on behalf of people living with dementia and carers.

But there is no doubt that charities in dementia, big or small, need to be effective campaigners.

Here, Cancer Research UK, the world’s leading charity dedicated to cancer research, provides a salutary tale. They support research into all aspects of cancer through the work of more than 4500 scientists, doctors and nurses in over 40 towns and cities in the UK. It is said that In 4 years, the charity grew its campaigner base from virtually zero to well over a third of a million people.

Spiers (2009):

“The bulk of grassroots campaigners respond to a small number of infrequent, simple asks, such as e-mailing an MP or signing a pledge. A smaller number of ‘super-activists’ want to take action more frequently and are willing to commit to more complex or demanding actions, for example collecting petition signatures in their community or organising a letter-writing day. A very small proportion of campaigners, known as ‘Ambassadors’, are keen to fully engage in campaigns and are trained in face-to-face lobbying before meeting with politicians at a lobby day. Ambassadors follow-up their meeting with local and regional press coverage, constituency visits and letter-writing.”

Their model is this.

model

(from Spiers 2009).

A councillor in Paris recently demonstrated the potential power of public petitions. His campaign against supermarket food waste amassed more than 200,000 signatures by the time national legislation was approved in France. The move has now encouraged other countries on the continent to follow suit, arguably?

Many charities have compelling stories within their social networks. These often involve inspiring and determined people whose passion can appear at odds with a well established charity with strong brand identity. But it can be a challenge to communicate
this history to the wider public without coming across as old-fashioned.

In contrast, it’s been estimated that there are more than 85 million users of the petition website Change.org in 196 countries, with a perhaps unmeasurable number of petitions on the go at any one time. Similarly, the campaigning group 38 Degrees has 2.5 million members in the UK.

So can a single petition #FixDementiaCare?

Stranger things have happened… stop the world, maybe it’s time to get off.

References

Benford, R. D., and Snow, D. A. 2000. “Framing Processes and Social Movements: An Overview and Assessment,” Annual Review of Sociology (26), pp. 611-639.

Fredin, E. S. 2001. “Frame Breaking and Creativity: A Frame Database for Hypermedia News,” in Framing Public Life: Perspectives on Media and Our Understanding of the Social World, S. D. Reese, O. H. Gandy, and A. E. Grant (eds.), New York: Routledge, pp. 269-293.

Soule, S.A. 2009. Contention and Corporate Social Responsibility, New York: Cambridge University Press.

Spiers, J. Cancer Research UK’s Cancer Campaigns function: moving into the campaigning arena. J. Public Affairs 9: 183–191 (2009)

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Launch – Enhancing health and wellbeing in dementia: a person-centred integrated care approach

 

Thank you very much for attending my third book launch here in the Arlington Centre. The last book launch was in July 2015, which I co-hosted with Kate Swaffer and Beth Britton.

 

This third book is called ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach”, published by Jessica Kingsley Publishers on January 19th 2017. The title reflects that every person has a human right to health, and that wellbeing is a critical part of wellbeing. People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™ ) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Prof Dawn Brooker. The book is also dedicated to Prof Martin Rossor, national director for dementia research, for whom I worked in 2003.

 

I should welcome to you to participate fully in the afternoon, which will be introduced by Lisa Rodrigues CBE.

 

There’s an open question for discussion at the end to which there’s no right answer. As the delegate list is a powerful mixture of persons living with dementia, carers, social workers, AHPs, managers, academics, technologists, nurses, leads, physicians, psychologists, and people who defy any sort of categorisation, to name but a few, I anticipate it will be a lively discussion. My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. many of the interventions and service developments will ultimately rely on this.

 

Thankfully, there are people in care settings who are devoted passionately about the environment of care, for example helping carers identify, find solutions and create a care plan to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or it is inadequately acknowledged that dementia care requires strategic consideration of palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.

 

The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:

 

There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”

Chapter 1, Five Year Forward View, 2014 [https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/]

 

Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia. Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within BME communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.

 

Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.

 

But an alternative view is possible.

 

Take for example Wendy Mitchell – living with dementia:

 

However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”

 

(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)

 

Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are possibly about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions. With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia. Indeed, in the last few years there has been massive progress in communities becoming supportive to people with dementia and carers. It’s appropriate that this touches the co-design of national and local policy too.

 

This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.

 

There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. There’s no reason why dementia care and support in the future should be excluded from these technological developments, with the growing use of mobile devices, apps and social networks is becoming significant in enabling people to live more independent live. Together with care planning and continuity of care, the basic infrastructure of integrated care can be formed. The intelligent use of technology is transforming the way that people connect and services are delivered and gain resonance. Digital technology and social networks provide some of the most powerful tools available today for building a sense of connectedness among groups of people with similar interests and concerns.

 

Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.

 

The pressures on residential care are enormous. Some care homes face insolvency. Managing risk through correct governance is important on clinical, business and financial axes; by managing risk you can better prepare for, understand and minimise it in order to achieve care aspirations. To embrace person-centred care it is necessary to embrace an appropriate culture, and this might require strategic change management – it’s not simply a question about physical buildings, nor isolated ‘pledges’. Each person is an individual with individual needs and changes to the environment needs to nurture that person, and this includes the health and wellbeing of staff. The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.

 

We live in exciting times.

PROGRAMME

 

2.00 Introduction Lisa Rodrigues CBE

2.10 Preventing excess disability through psychological approaches: a clinical psychologist’s view, Reinhard Guss

2.25 Co-production, human rights and citizenship, Alison Cameron

2.50 Technology and supporting well, Maneesh Juneja

3.10 Acute hospitals and caring well: a clinical nursing specialist’s view, Lucy Frost

 

3.30 Networking Break (with afternoon tea and biscuits)

 

3.50 Acute hospitals and caring well: a physician’s view, Avinash Sharma

4.10 Care homes and promoting wellbeing, Yvonne Manson and Joe Walker

4.30 Hospices and dying well, Sarah Russell and Marie Cooper

4.50 Living alone at home, Wendy Mitchell and Jo Moriarty

 

5.10 Open discussion

 

Question:

How can we best address the needs of persons living with #dementia and those who care for them?

 

5.30 End.

 

 

 

Dr Shibley Rahman

London, 16 November 2016

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We need a national dementia strategy for England, and not merely a ‘plan’

I don’t intend this blogpost to become a ‘whinge-arama’ or ‘whingethon’ about all that is wrong in English dementia policy. There’s a lot that it is right, which is a testament to the current people leading this whether in social care, NHS or third sector, and not least to the voices of people living with dementia and their closest who care.

I think the strongest part of the overall ‘dementia offering’ is the ‘plan’ for research. Whilst nobody would want to be where we are in terms of care, whether it be the financial sustainability of care homes or delayed transfers of care/discharges, the aspiration for research into quality of care is very much to be rewarded.

Care England

I am actually hugely positive about the research arm of the 2020 Dementia Implementation Plan. And to be overly critical on the aspirations for neurochemical research would be somewhat unjust, though an overall objective in strategy would be to continue translationary research and clinical drug trials, but conceding that we need to learn from failure and that there is unlikely to be a ‘big bang breakthrough’ but rather some interventions for particular types of dementia. Notwithstanding, I love the ‘hub and spoke’ and drug discovery work. I should also like to have seen a commitment to high quality research into cognitive therapies. The strangehold of drug based research on Alzheimer’s disease as opposed to the hundred other forms of dementia has to be broken somehow, even though there is a massive financial bias here and Alzheimer’s disease is purportedly the most prevalent type of dementia in the UK.

For true validity, it’s important that people with dementia don’t simply get reduced to brand ambassadors for Big Charity, and, to be fair, to suggest this was the case would be a great disservice to the current state of play. However, it is of substantial concern to me that in the current roll-out of the 2020 Dementia Implementation Plan that ‘caring well’ might have become an oversight. And of course the experts-by-experience are not ‘to blame’ for this; the ‘experts’ leading on policy on England need to come up with a more than a soundbite why we’re not strongly promoting actively family carers, undervalued carers of all forms, respite care, clinical specialist nursing care, social care, domiciliary care, and so on. The 2020 Dementia Implementation Plan talks about tangible measurable benefits of policy, but it was only last night that the BBC made reference in their lead news story to dementia as ‘a devastating disease’, and people living with dementia as “dementia sufferers”, in a state of language presumably designed to exacerbate further fear, stigma and fundraising. The lack of qualitative outcomes remains painfully absent from the flagship multi-million pound campaign from the Alzheimer’s Society and Public Health England called “Dementia Friends”.

The background has been extensively rehearsed elsewhere.

According to the Alzheimer’s Society, there are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. It is currently estimated that this number is set to reach 2 million by 2051.

We’re currently (theoretically) in the first part of a biphasic implementation plan for dementia in England. The lack of coherent strategy in England for dementia is not a trivial one. The five year strategy for England, published by the Department of Health, entitled ‘Living well with dementia‘, expired in 2014. Since then, there have been piecemeal documents which can best be described as progress reports in follow up to the 2012 Prime Minister Challenge on Dementia. But I’m very much mindful of a piece for Harvard Business Review entitled ‘Don’t let strategy become planning‘. It might be comforting to have a five-year plan but this Government, which loves liberalising towards the free market, is far from, ideologically, Stalinist Russia.

Correctly stated in the article:

“To make strategy more interesting — and different from a budget — we need to break free of this obsession with planning. Strategy is not planning.”

A similar article in the same vein is “A list of goals is not a strategy“. The current 2020 implementation plan while a very good list of goals, I feel, hits way short of the mark. Even if you were to believe that all stakeholders are rational decision makers (which they are not), this plan makes no attempt to address the underlying landscape of much important in dementia. It’s undeniable for me that it is not a case of ‘mission accomplished’ for dementia awareness (especially amongst commissioners), tackling stigma, and combating discrimination and prejudice.

But one would be most unwise to deny a landscape, which has various political influences (such as the infamous ‘sustainability and transformation plans‘), the economic landscape (national and local spending priorities including living wage and social care ‘precept’), social (for example social inclusion, the drastic cuts in social care from the last few years), technological (including the ‘internet of things’), legal (for example recent legislation yet to be repealed turbo boosting market competition in the NHS and introduction of ‘social value’) and environmental (for example the importance of green spaces and built environments in England, along with the more marketable ‘dementia friendly communities’). (It’s staggering how much #Brexit will affect the provision of care and EU research funding, which will have to be addressed in phase 2 of the Plan now.)

I have to say that I essentially agree with @rochfordbrennan‘s words – so I have no idea why England’s so blasé about having a national strategy.

snippet

It is well known that many stakeholders expected a ‘lessons learnt’ log of the experience of the 2009-14 strategy. I have no doubt that the 2009-2014 “five year strategy” went a long way to closing the ‘diagnosing’ gap (and the concomitant ‘assessment gap’ through memory clinics and the such like), but I am left wondering whether it raised expectations for closing a ‘post diagnostic support’ gap. The declaration made in January 2016 was all pretty predictable stuff,  but one would expect a benefit of more diagnosis not simply to be more certificated deaths from dementia given the current state of play in social care and the NHS. This would have been very useful in guiding the future – in other words, knowing what worked and what didn’t.

Back to the notion that ‘a list of goals is not a strategy‘, the glaring democratic deficit with the NHS and social care workforce is witnessed in the three questions asked by the author; they are,

  • Identify which stakeholders you depend on for success.
  • Recognise what you want from your stakeholders.
  • Recognise what your stakeholders want from you.

Doing a text search for ‘social care’ reveals references to social care only in relation to ‘health and social care’ and integration, framing the rôle of social care as an ‘add on’ to health rather than a pivotal discipline on its own.  There is a single reference to ‘domiciliary care’, in the context of ADASS e.g.  this on p.52, and a related point 5.95 on p.45

Encourage its members to ensure that commissioned services contractually specify the minimum standards of training required for providers who care for people with dementia including residential, nursing and domiciliary care settings.

From conversations with clinicians I’ve met, as well as individuals who’ve received a diagnosis of dementia and those who care, I find that acknowledgement of some key issues would be strongly welcomed. Dementia never travels alone, in other words it’s very rare for a person to have dementia as the only medical issue, and it impacts in an unique way on friends and family. It is marked by exquisite complexity, which means that you need flexible, adaptable and adequately resourced systems to address needs. And people with dementia, not least because dementia can be a very disorientating condition, benefit very much from a person-centred integrated approach where continuity of care is king.

There is a sense of the tactics from the Department of Health documents, whoever actually wrote them, but it is totally unclear what the overall strategy is currently. As Sun Tzu said in ‘The Art of War’, 人皆知我所以勝之形,而莫知我所以制勝之形, in other words “All men can see these tactics whereby I conquer, but what none can see is the strategy out of which victory is evolved.”

CwuORvSW8AECOjc.jpg-large

Examples of where the 2012 aspirations have somewhat fallen apart are noteworthy.

Take for example, the “key commitments” given on p.6 of the Prime Minister Challenge on Dementia.

Under the first section entitled “Driving Improvements in health and care“, it was written:

Financial rewards for hospitals offering quality dementia care
From April 2012, £54m will be available through the Dementia Commissioning for Quality and Innovation (CQUIN) to hospitals offering dementia risk assessments to all over-75s admitted to their care. From April 2013, this will be extended to the quality of dementia care delivered. Also for April 2013, access to all CQUIN rewards will be dependent on delivering support for carers in line with the National Institute for Health and Clinical Excellence (NICE)/Social Care Institute for Clinical Excellence (SCIE) guidelines.

But this quickly fell into problems.

In an article “GP dementia payment scheme will end next year, NHS confirms” BMJ 2014; 349 (published 28 November 2014) Adrian O’Dowd wrote,

“A controversial scheme that pays GPs to improve their diagnosis rates of dementia cases will not continue after next spring, the NHS has confirmed .. The national enhanced service known as the Dementia Identification Scheme, launched last month by NHS England, pays GPs £55 for each additional patient on their list with a new diagnosis of dementia.From the outset the scheme was intended to run only from October 2014 to March 2015, but it proved to be unpopular with doctors’ representatives and charities. It was designed to help the government hit its targets on dementia diagnosis rates in 2015, but it was described as unethical by many, including GPs themselves.
”

The quality of dementia diagnosis matters. It was claimed yesterday that “Last year, more than 61,000 people died of dementia – 11.6% of all recorded deaths”, and yet there are supposed to be 850,000 people living with dementia in total in the UK.

Under “Creating dementia friendly communities that understand how to help”,

“Awareness-raising campaign From autumn 2012, we will invest in a nationwide campaign to raise awareness of dementia, to be sustained to 2015. This will build on lessons learned from previous campaigns and will inform future investment.”

It is not sufficient to talk about ‘dementia friendly communities’ in health and care settings. As far as the delivery of person-centred care in acute care is concerned, for example, there are wider issues in addition to training of the workforce, such as ‘boarding’ of patients with dementia on inappropriate outlier wards, changing medical teams during a single admission, rota gaps, and so on. It also refers to staff being supported well, and not ‘burnout’. We know from the subsequent Royal College of Physicians report, entitled ‘Underfunded, under doctored and overstretched‘, there are noteworthy pressures on physicians delivering high quality care. The overall environment is much more than the quality of the décor.

Whilst it is invariably the case the work done by volunteers and others for ‘dementia friendly communities’ is superb and should not be discouraged, the term ‘dementia friendly communities’ is entirely bogus. Firstly, ‘friendly’ more than denotes an air of ‘does he take sugar?’ reinforcing the notion of people with dementia as some underclass who comprise a burdensome homogenous group of people acting as passive recipients of services. Secondly, the co-morbidity in dementia is substantial, so any environments which are ‘friendly’ to people with dementia should really be friendly to all (including those who are old and might have physical impairments such as sensory impairments or mobility difficulties.) And again – perhaps to advance localism – there is nothing ‘national’ about it, for example improving national transport networks or improving the national infrastructure for high-speed broadband, but I concede the strength of dementia friendly communities is undoubtedly in strengthening a sense of local community.

70 per cent of people in care homes have dementia or severe memory problems. But the state of play for care homes is currently dire, and this is bound to have an impact on the quality of a ‘dementia friendly community’ in the residential setting.

ADASS tweet

The English dementia approach for 2015-20 has therefore been a totally underwhelming piecemeal response which runs a series of goals rather than higher level strategic vision. The lack of meaningful stakeholder involvement with the frontline practitioners and other professionals working in clinical care is painfully clear. The 2020 Dementia Implementation Plan, run as a series of goals which read as justification for decisions on a balance sheet, is a boring shopping list designed to improve the brand value of an élite few. Expecting a handful of people with dementia who might have ‘influenced’ the work somehow to market the work in public engagement meetings is the height of crass behaviour from a select cabal protecting their vested interests. This is of course epitomised in the shameless lack of ‘caring well’, justified as being alternatively branded as ‘supporting well to provide meaningful care’.

Caring well

Littered through the 2020 implementation plan are countless omissions. For example, there is no mention of hospices in the entire document. There is indeed some discussion of the Department of Health, to “work with NCPC to establish a pilot scheme to give care home staff and carers the knowledge, skills and behaviours to deliver co-ordinated, compassionate and person-centred end of life care for people with dementia”, but there needs to be a focused aim to deliver palliative and end of care in all care settings, and to focus efforts on research here too.

One wonders whether we will return to having a policy in 2021-2025 nationally, to mitigate against the ‘postcode lottery’ of personal integrated budgets or personal genomics. If there is no national strategy, one has to demand whether we need a national clinical director at all, apart from needing to fulfil a rôle as keynote speaker on the conference circuit.

@dr_shibley

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Rights in the post ‘dementia friendly community’ world

Rights for persons living with dementia are at risk of being hijacked by persons not living with dementia but who want to ‘facilitate’ this industry. Taking the physical disability movement as a comparison, the assertion of disability rights continues to be most vocal from people living with physical disability. Likewise, rights for people living with dementia and carers cannot be sold as bitesize products for commissioners to be truly authentic, further marketed by appropriate ambassadors in third sector entities. The imbuing of a rights based consciousness is too important to be trivialised this way, in a world which lives post ‘dementia friendly community’.

A ‘dementia friendly community’ was wrong at so many levels. The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place. It ran the risk of not only being patronising to a group of people, but being run for the benefit of business and third sector, and careerist people, wishing to seek competitive advantage. It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services, leaving people to be ‘engaged’ at pre-fabricated meetings rather than genuinely involved in co-production. The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau; it is a way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

In a post ‘dementia friendly community’ world, often articulated through the prism of higher income countries, rights take on a different meaning as they are inalienable and universal. They therefore offer an alternative economy to the one occupied by personal budgets and consumer-directed care (again further reinforcing the idea of people with dementia and carers as passive recipients). The alternative economy of citizenship, mutuality and reciprocity, offers a new and important language for the whole 50 million currently living with dementia, and complementary rights for  those closest including unpaid and underpaid carers.

There is, I feel, a great advantage to reframing the debate into one of social capital as a collective good and which emphasises its collective benefits. Under this perspective, trust, reciprocity and strong social norms are seen to effectively regulate cooperative social relationships. The social capital makes the whole stronger than the sum of its constituent parts, and rather than people seen as individual bits in a competitive world behave to ‘fill in the gaps’ of  others. Combining a private and public good perspective, Inkpen and Tsang (2005) provide a network centric definition of social capital as “the aggregate of resources embedded within, available through, and derived from the network of relationships possessed by an individual or organization” (p. 151).

But there is no reason to believe that this other way of doing things should be necessarily denied inward investment; the crucial thing is that this is not just to ‘facilitators’ or big corporates, but for people living with dementia themselves and carers. Dementia is characterised by complexity, and you really have to simplify it at your peril. It also attracts a high level of multiple morbidity; it is extremely unlikely that a person lives with dementia alone, but also with a range of other issues such as heart or lung problems. Therefore, the idea of a ‘dementia friendly community’ is entirely bogus. A community as such which is friendly to ‘dementia’ should be friendly to all, and defining people by disease labels, while enticing to big corporate charities, is not how the real world works at all.

A social network perspective can focus on the enduring patterns of relationships among interacting social actors (i.e. entrepreneurs, firms) through examining the social, economic, or political network structures of ties that provide actors with opportunities and constraints. A core position derived from the network’s notion, as articulated by Mitchell (1974), is “that if people are tied to one another by a variety of links, then they will find it difficult to sever social relationships and therefore are obliged to carry out the expectations and obligations entailed in those relationships” (p. 283).

The ‘interconnectedness’, a term which was all too familiar to Kitwood, is further strengthened now by the ‘internet of things’. There is no doubt that the Internet has significantly expanded the meaning of community for older adults. Once tied to physical locations, communities created through online experiences transcend space, time, language, and financial, physical, and other traditional barriers. Dementia friendly communities became obsessed with the idea of big corporate banks or high street brands welcoming shoppers better; but this was to ignore the plethora of other barriers (such as financial) or physical disabilities stopping people engaging with such capitalist communities in the first place. Dementia friendly communities merely becoming an extension of David Cameron’s version of Nudge capitalism entirely defeated the purpose of promoting citizenship and rights of people living with dementia, unless you happen to believe that their most important rights are consumer rights.

But now there’s the “internet of things” (IoT). Essentially the idea is to give physical objects identities on the internet. Just like your computer or phone are connected to the internet now, in the not too distant future, so too will your car, house, fridge, and almost anything else you can imagine. This world of technology, if not subject to cyberattack or malfunction, might conceivably make one’s life easier. Gartner estimates that the Internet of Things (IoT) will support total services spending of $235 billion in 2016, up 22 percent from 2015. Services are dominated by the professional category (in which businesses contract with external providers in order to design, install and operate IoT systems), however connectivity services (through communications service providers) and consumer services will grow at a faster pace.

In the new post-dementia friendly era, it is imperative that “rights” are not simply viewed as a “nice to have” phenomena, or a new product to sell to commissioners. They can instead be the vehicle by which people with dementia (and other conditions) and carers can flourish. Social enterprise activities are local ventures that have both a market orientation as well as fulfilling a social or cultural purpose. Strengths-based approaches to community development emphasise the social “capital” assets of communities. Strengths-based approaches aim to reinforce local talents and build local capacity, and the critical thing is that, as for physical disability, people’s talents are best harnessed in particular areas. This approach is incredibly important to people who live with dementia still in employment, where neurodiversity means that people are in rôles most suited to them.

By focusing on local priorities and strengths and assets – rather than perceived community deficits – pride, confidence and motivation are enhanced. The rights-based approach uniquely offers people a chance to participate fully, and lessens dependence on external approaches to “solving” local community issues. Social capital, as measured by the strength of family, neighbourhood, religious and community ties, supports both physical health and subjective wellbeing, and raising social capital in local and middle income countries through rights based approaches is achievable.

The success of a ‘dementia friendly initiative’ might include a big grant, angel investors, venture capitalists, or private equity investors. And indeed the lazy wishing to make money out of ‘dementia rights’ will seek the same sources of income. But the interconnectedness of people is the disrupting factor here, arguably. Examples of the pervasive power of online social networks in the lives of older adults are everywhere, including Skype and FaceTime.

Technology can be compared, for example, with traditional approaches of harnessing social capital such as “timebanking”. LinkAges’ Bay Area Time Bank (http:// timebank.linkages.org/) is a community-based service exchange network where members provide neighbourly services to one another  in exchange for time. Facilitating both online and of ine interactions, Time Bank members, including older adults and family caregivers, can address personal needs through exchanges with other members that focus on their interests and skills and explore new possibilities for meaningful engagement in their communities, exactly in the spirit of the timebanking as introduced by ‘true radical’ Prof Edgar Cahn.

Furthermore, there have been lots of potential opportunities in using crowdfunding to support and fund projects in developing economies. According to a recent Nesta blogpost, the countries that raised the most money in 2015 were: India ($27.8m), the Philippines ($26.9m), Nepal ($25.5m), Mexico ($24.8m), and Kenya ($19.9m). All of these countries — with the exception of Nepal — have budding crowdfunding ecosystems and could become leaders in their regions.

Be in no doubt – the language is changing from marketing of facilitation to genuine emboldening of rights, where people with dementia all around the world can call the shots. ‘Dementia friendly communities’ benefited corporate and large charities more than people with dementia themselves, and goodwill for this was bound to run out.

References

Inkpen AC, Tsang EWK (2005) “Social capital, networks, and knowledge transfer.” Academy of Management. Acad Manage Rev 30(1):21

Mitchell JC (1974) Social networks. Annu Rev Anthropol 2:21

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“Walk the Walk, Talk the Talk” by Keith Oliver

‘…At one time I thought I was bullet proof: I was wrong. No one is.’

On New Year’s Eve 2010, Keith Oliver was told by a doctor that he had Alzheimer’s Disease. He was just 55, the head of a thriving primary school, a husband, father and grandfather, in the process of studying for an MA in Education.
Walk the Walk, Talk the Talk is the story of Keith’s life before, during and since receiving his diagnosis, told not just by Keith, but by the health professionals, friends and family who know him best, and including a selection of the talks he has given to a wide variety of audiences since his diagnosis. This is a story of hope and encouragement that is both moving and inspiring.

‘An essential companion for anyone who has been diagnosed with dementia, or those close to them… It’s a damn good read.’

– Richard Madeley, Alzheimer’s Society Ambassador

Join Keith Oliver for the launch of his new book
Walk the Walk, Talk the Talk

Saturday 12th November 10am-3pm

Venue: Canterbury Christ Church University, Augustine House (room AH1.21)
Refreshments will be available
Keith will be giving a short presentation about his book at 10.30am, 12pm and 2pm, but you are welcome to drop in at any point during the day for your signed copy at the special promotional price of £5.
Directions to Augustine House can be found here.

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A word from me about Chris Roberts winning at #DementiaCareAwards 2016

I am delighted that one of my close friends Chris Roberts was selected as Exceptional Person with Dementia last night at the #DementiaCareAwards in Brighton. Thank to Pam Luckock and Fran O’Hara for nominating Chris. I know this will mean a huge amount to Kate Roberts Caz Roberts and Jayne Goodrick. I was honoured when Chris agreed to do a foreword to my second book on #dementia.

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The foreword appears in “Living better with dementia: good practice and innovation for the future” published by Jessica Kingsley Publishers (2015),

Delighted

It meant a lot to me that Chris was able to give a talk on my work at my book launch last year.

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