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A design for dementia friendly communities to benefit the tyranny of the majority?

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Nobody lives with dementia on its own. Many people living with dementia live with at least a few other conditions. Their health needs are complex, particularly since ‘dementia’ embraces itself more than a hundred different conditions manifest in often very different ways.

At the time of the Prime Minister Dementia Challenge (2012), the Alzheimer’s Society found an instant magic way of getting people to volunteer into promoting dementia awareness. It would be naïve not to expect that some of them would become brand ambassadors for the Alzheimer’s Society, even though the Alzheimer’s Society claimed not to be the same as Dementia Friends (despite the owner of the trademark being the Alzheimer’s Society, the use of the same corporate font FS Albert, the copious mention of Alzheimer’s Society in press releases and press reports.)

Far from promoting diversity, “dementia friendly communities” in England seems to be channeled through some weird dystopic corporate capture, including favoured outcomes for grant applications with the term ‘dementia friendly community’ in it, official award ceremonies, and regulatory capture through the official ‘recognition process‘.

In the real world, dementia care is on its knees. Social care has never had it so bad, with its funding having not been protected since 2010. The vast majority of NHS Trusts are now in financial distress due to gross underfunding and the sequelae of private finance initiatives, meaning that people with dementia are stuck in hospital through no fault of their own. It’s all very well allowing carers to visit outside visiting hours, but this is not an adequate solution to the needs of carers, whose psychological resilience needs protecting to avoid premature illness of carers or premature transfer into acute hospital or residential care of people with dementia.

At every possible juncture, the undeniable value of clinical specialist nurses, dementia advocacy services, or respite care services have been consistently rubbished, culminating in the airbrushing of ‘caring well’ from the NHS Transformation Network for living with dementia altogether.

dementia-well-pathway

[Reproduced under then Open Government license.]

The English dementia strategy was not renewed in 2014, and its lack of direction, apart from promoting the corporate branding of the Alzheimer’s Society, arguably has become a huge embarrassment to many professionals and practitioners specialising in the field, who can see health and social care systems at breaking point. The phrase “tyranny of the majority” (or “tyranny of the masses”) re-surfaced in interpretation of the #Brexit vote, and had been used in discussing an inherent weakness in the system of pure direct democracy and majority rule. Tyranny of the majority involves a scenario in which a majority of an electorate places its own interests above, and at the expense and to the detriment of, those in the minority, where by that detriment constitutes active oppression comparable to that of a tyrant or despot.

Nobody as such voted for ‘dementia friends’ or ‘dementia friendly communities’, and yet millions of pounds have been pumped into this initiative, with no official report as yet about outcome measures. Newspaper headlines are still littered with phrases such as ‘dementia sufferers’ and ‘dementia victims’, despite a nirvana of grants being awarded for empowerment, engagement and language in dementia – while enhancing health and social care in dementia is on its knees. “Advocates” call cheerfully, amidst their conference appearances, for greater GP training, while not seeming to appreciate that GPs have gone way beyond breaking point e.g. weeks to get a routine GP appointment, no more than a few minutes to see each patient with multiple co-morbidities. Potentially, through tyranny of the majority, a disliked or unfavored ethnic, religious, political, or racial group may be deliberately targeted for oppression by the majority element acting through the democratic process.

Part of achieving a ‘tyranny of the majority’ is through a “centralisation excess” when the centralised power of a federation make a decision that should be local, breaking with the commitment to the subsidiarity principle. In other words, your dementia friendly community is fine, and can be ‘badged’, so long as it conforms with ‘our’ vision. The new trademark for the Alzheimer’s Society (UK00003172674) was entered officially on the UK trademark register in November 2016, including even Class 18 (for trunks and travelling bags; handbags, rucksacks, umbrellas, parasols and walking sticks). The word mark is “United against dementia”, but with the airbrushing of clinical specialist nurses in high quality care in dementia, or without any effort at adequate resourcing of the social care profession, the three words are at danger of being entirely vacuous.*

In a parallel universe, in other words of academic research, professionals and practitioners there has been real progress in the definition of health to promote ‘social wellbeing’, towards a more dynamic one based on the ability to adapt and self-manage. Three domains of health are now characterised by the World Health Organisation: the physical, mental and social domains. Physical health was characterised as being capable of maintaining physiological homoeostasis through changing circumstances. Mental health as a sense of coherence, which contributes to the capacity to successfully cope and recover from psychological stress. Social health was characterized by three dimensions: (1) having the capacity to fulfil one’s potential and obligations; (2) the ability to manage life with some degree of independence, despite a medical condition; and (3) participation in social activities including work (Huber et al., 2011). These domains are fundamental to WHO’s community based rehabilitation where enhancing health and wellbeing in dementia is more than a mere corporate marketing exercise for ‘dementia friendly communities’. It engages and empowers specialists with years of experience, such as physiotherapists, occupational therapists and community nurses, promoting human rights and social value. We should be looking for excellent islets of excellence abroad for inspiration for best practice (e.g. Buurtzorg), as well as some of the excellent examples in the ‘enhancing health in care homes’ project from NHS England.

According to Vernooij-Dassen and Jeon (2016), the added value of the concept of social health lies in various core features. It is an umbrella for an array of concepts reflecting human capacities to participate in social life, such as reciprocity and dignity, and resilience; and yet it is explicitly said in the pre-scripted patter of ‘Dementia Friends’ that Dementia Friends are not supposed to befriend people with dementia, a departure from the Japanese ‘caravan’ scheme on which Dementia Friends is meant to be loosely based. Social health is, rather, clear overarching concept facilitating communication between the psychological, social and biomedical sciences; it does not focus on deficits but on remaining capacities, and more importantly, it relates to normalcy. The new concept of social health proposed by Huber and colleagues, is in line with the social model of disability, which places an obligation to value what people can do rather cannot do, but likewise imposes an obligation to make reasonable adjustments for the things which people cannot do (e.g. memory aids for memory problems).

In the past few decades, research among people living with dementia has addressed several aspects of social health based on a variety of theories. This has resulted in a useful, but somewhat fragmented knowledge base in this field. For example, more than 40 years ago Lawton and Nahemow (1973) described the environmental docility hypothesis which relates to the first dimension of social health, focusing on the capacity to fulfil one’s potential within enabling or disabling environments. And indeed we can see the seeds of this in the WHO Aged Cities and RSA Connected Communities, which predate ‘dementia friendly communities’ from the Alzheimer’s Society. The NHS and social care infrastructure has a critical rôle to play in self-care and self-management, or “hospital at home”, highlighting the remaining ability to manage life, despite a medical condition, provided that improved resources for community services are front loaded prior to any savage hospital cuts. Based on such evidence, and building on remaining cognitive skills, several interventions have been developed in dementia care such as the home environmental skill building program, cognitive rehabilitation, and cognitive stimulation therapy. These would have been natural bed fellows of the dementia friendly communities approach, save for the issue that funding for psychological therapies has crashed too.

The concept of personhood (being a person in relation to others) primarily emphasises the importance of social participation for people with dementia. Interventions focusing on maintaining or improving social relationships with people living with dementia, e.g. person-centred care and reminiscence, appear to not only have beneficial effects on social interactions, but also improve mood and cognitive function, reduce the use of antipsychotics, and enhance the quality of life of people with dementia in residential care settings. Having dementia communities framed by a tyranny of the majority, for example the Alzheimer’s Society and Alzheimer’s disease International, cannot possibly allow enhancing health and wellbeing in dementia to flourish. Being ‘united’ in dementia would mean substantial funds from national societies directly to the world stakeholder group of people living with dementia, Dementia Alliance International (DAI), rather than national societies being rather obstructive in this cause? As an impartial independent observer, I can only say that DAI must be for the benefit of people living with dementia primarily rather than for the benefit of Big Charity.

The system though has been designed to cascade down a particular ‘vision’ of dementia friendly communities, where brand ambassadors can locally affect local economies through ‘badging’ dementia friendliness – this might include getting a chain of high street banks to say they’re ‘dementia friendly’, whatever the actual reality of the boots on the ground. The whole deception comes from the appearance of localisation despite strong central influences. This is understood best through the notion of “swarm intelligence” (SI) is the collective behaviour of decentralised, self-organised systems, natural or artificial. The concept is employed in work on artificial intelligence. The expression was introduced by Gerardo Beni and Jing Wang in 1989, in the context of cellular robotic systems.

SI systems consist typically of a population of simple agents or “boids” interacting locally with one another and with their environment.  The agents follow very simple rules, and although there is no centralised control structure actually dictating how individual agents should behave, local and to a certain degree random interactions between such agents lead to the emergence of “intelligent” global behavior, unknown to the individual agents. Examples in natural systems of SI include ant colonies, bird flocking, animal herding, bacterial growth, fish schooling and microbial intelligence.

Critical to this are the ‘dementia friend champions’, known in corporate world as the “brand ambassador”, a person who is hired by an organisation or company to represent a brand in a positive light and by doing so help to increase brand awareness and sales. The brand ambassador is meant to embody the corporate identity in appearance, demeanor, values and ethics. The key element of brand ambassadors is their ability to use promotional strategies that will strengthen the customer-product-service relationship and influence a large audience to buy and consume more. Predominantly, a brand ambassador is known as a positive spokesperson, an opinion leader or a community influencer, appointed as an agent to boost product or service sales and create brand awareness.  Big Charity is not concerned with ‘sales’ as such, though it appears to have been unhealthily obsessed with fund raising for the sake of it, and excessive use branding and public relations.

The term “brand ambassador” loosely refers to a commodity which covers all types of event staff, varying between trade show hosts, in store promotional members and street teams. The fashion industry however, solely rely on celebrity clientele in order to remain brand ambassadors. Furthermore, brand ambassadors are considered to be the key salesperson for a product or service on offer. Critical in the functioning of Big Charity has been the engagement of a super-breed of highly articulate and experienced “celebrity persons living with dementia”, adding the “authentic voice”, even if a consequence is to drown out professionals and practitioners who also want to make health and social care systems succeed.  It has become excruciatingly embarrassing to read that the outcome of ‘organic’ “involvement and engagement events” conclude with the advocacy of dementia support workers and dementia friendly communities, both high vis products of the Alzheimer’s Society, while the NHS and social care systems are on their knees? But be in no doubt the real patient carer voices are extremely important, but often a third party (e.g. social enterprise, university grant recipient) benefits too these days, and certain things might become lost in translation thus.

But when policy goes awry, it is the moral responsibility of people to say so, even if grants depend on it. As the great parliamentarian Edmund Burke said, “The only thing necessary for the triumph of evil is for good men to do nothing.”

References

Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011 Jul 26;343:d4163. doi: 10.1136/bmj.d4163.

Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, Roes M, Verhey F, Charras K, The Interdem Social Health Taskforce. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2016 Nov 21:1-14. [Epub ahead of print]

Lawton, M.P., Nahemow, L. (1973). Ecology and the aging process. In C. Eisdorfer & M.P. Lawton (Eds.), The psychology of adult development and aging (6th ed.) (pp. 619–674). Washington, DC: American Psychological Association.

Vernooij-Dassen, M., Jeon, Y.H. (2016). Social Health and Dementia: The power of human capabilities International Psychogeriatrics, 28(5), 701–703. doi: 10.1017/S1041610216000260

 

* Please note that the publication of the trademark is in the public domain, and therefore under the law of equity I am fully entitled to publish a link to it under English law.

 

@dr_shibley

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The future of dementia care is a different place. They do things differently there.

The intense and snake oil oozing slogan of the year has of course been “take back control”. It was wot won it for the EU referendum and won the vote for the Brexiteers. Donald Trump noted the power of this verbal drug, and made it a central theme of his winning campaign. Choice and control, like the slogan, have been central planks of English dementia policy, but actually can pass under similar levels of lack of scrutiny. For example, anyone with dementia who has full legal capacity but is known to make dodgy risky decisions on account of the function of his or her brain one should have ready adequate safeguarding processes in the use of a personal budget, but unfortunately where ideology trumps good clinical practice, problems lie ahead.

In a rather quick answer in the evidence gathering session of the NHS Sustainability Committee, Dame Sally Davies, the current Chief Medical Officer, gave the briefest of description of the impact of austerity in strategy analysis and future implementation. And yet the implementation of this political policy, which has seen national debt explode and immeasurable cuts, has had an impact on an ability of provision of dementia care.

If you take as a basic definition that innovation is the successful implementation of new ideas, I feel that it makes intuitive sense to think of ‘frugal innovation’ as a valid solution for residential care in dementia, as it “responds to limitations in resources, whether financial, material or institutional, and using a range of methods, turns these constraints into an advantage” according to a Nesta definition.

It is anticipated that successful frugal innovations are not only low cost, but outperform the alternative, and can be made available at large scale, and, often, but not always, frugal innovations have an explicitly social mission. I came across this ‘social mission’ in a drive for innovation when reviewing the impact of the work of Buurtzorg Nederland earlier this year for my book on enhancing health and wellbeing in dementia to be published early next year.

Even the briefest scan of recent frugal innovations in India will convince you of the rather unusual skillset and mindset required for frugal innovation, along with a huge price-sensitive market and a willingness to experiment.  There is no doubting the scale of the financial distress of the NHS and social care, and yet extreme conditions and major gaps in service provision are exactly what provide the perfect storm for the provision of frugal innovations.

Strengths in service and business model innovation create an advantage in creative remodelling of product-service ecosystems. In terms of thinking about the future ‘sustainability’ of the NHS, some further factors loom on the horizon, such as the sheer numbers of people in the ‘aged bracket’ (even though the prevalence of dementia is falling).

People I know are generally sick of ‘change’, ‘leadership’, ‘innovation’ and ‘social movements’ in the social media especially Twitter, and yet continuing with the status quo for residential care of people with dementia, with highly complex needs in health and social care, and profound co-morbidities, is barely an option. Prof Sube Banerjee kindly grew attention to the prominence of both factors in his plenary at UK Dementia Congress  this year in Brighton, and I could not agree more with his appraisal. Sube kindly did the main foreword for my new book.

Caring for rapidly ageing societies will require completely new approaches to health and social care, including the radical rethinking of the generation of value that is apparent in some examples of successful frugal innovation. But also on the event horizon is that we do not know yet whether technology will provide a massive financial dead weight or will end up being the saviour. I suspect in fact it will be the latter, because new technology platforms are drastically reducing the cost of some forms of innovation, which is creating huge new opportunities for frugal innovators, particularly in services. When Tony Benn became Minister for Technology in 1968, the question was not whether to use technology, but how technology could be most intelligently used. This will continue to be a major theme in enhancing health in care homes (“EHCH”).

Formulating strategy for dementia is by and large difficult, for other uncertainties and risks on the event horizon (some of which extend far beyond the time scale of most electoral cycles). The compression of morbidity depends on the scale and pace determined by the success of neuropharmacological development, and, like the workforce in the care industry, Brexit might have a rôle to play there. At the moment, the Government has no idea how much money could be saved by adequately addressing the social determinants of health, although one could possibly hazard a guess at the financial costings of discrete areas of harm such as obesity in Glasgow or alcoholism in Liverpool, stereotypes aside. We don’t know how much there will be in the way of ‘proceeds of growth’ as the UK economy seems to become one giant ‘gig economy’, and essential drivers of policy seem to be undergoing volte face reform at the drop of a hat, such as the pension ‘triple lock’.

I myself am quite a way on the left of centre of politics, but I do worry about the extent of shroud waving concerning the future. The system as a whole needs confidence to listen to all views (“nothing about us without all of us”), and needs to fund innovations properly or else they will essentially will be set up to fail. There is no doubt in mind that two message that ‘sustainability and transformation plans’ concerning frugal innovation, namely ‘it entails making better things, not just cheaper things’ and ‘frugal innovation is about remodelling, not just de–featuring’, have become somewhat lost in translation in some areas. Given the sudden launch of the re-disorganisation of the Lansley reforms in 2012, there is a profound mistrust of Government introducing any change. Big Charity also loom large on the profound mistrust agenda, as nobody in public really knows where Dementia Friends from the Alzheimer’s Society came from at the drop of a hat in 2012.

The problem with the sustainability and transformation plans is that they can too easily be interpreted as a cover for cuts, downgrading drastically the offering from the NHS and social care, so that politicians can conveniently avoid funding care adequately. With a public sector on its knees, services then become ripe for privatisation. There’s no doubt in my mind that the ideological drive to introduce private markets in the NHS and social care has done much to add additional costs and waste, at the expense of quality (for example safe staffing), but likewise it would be unreasonable, to take the Aunt Sally argument, for every computer in the NHS to be built by the State.

I feel that there has now to be some degree of trust in ‘taking back control’, otherwise policy in dementia is run by mutual collusion behind close doors by Big Charity and the Cabinet Office. There is much better news from @NHSEngland’s EHCH programme. Currently, within six vanguard areas, care homes are working closely with the NHS, local authorities, the voluntary sector, carers and families to optimise the health of their residents. The enhanced health in care homes care model is an adjunct to the other new care models that are delivering whole population healthcare. It will become a core element of the multispecialty community provider and primary and acute care system  models.

And for me there are essential shifts in gear which are going to take place in EHCH (full details of the new framework as published in September 2016 are here.)  It’s essential to get rid of a narrow focus on medical rather than holistic needs; a financially distressed care provider market which will inevitably impact on quality in some care homes; and there are unnecessary barriers between organisations in different parts of the health service and between the NHS and other sectors, in particular social care getting in the way rather than facilitating the implementation of health and care planning.

The EHCH vanguards have identifed the following conditions which are critical for success, and I agree with all of them. [Figure reproduced under open government license.]

Evaluation strategy for new care model vanguards

 

And we cannot get away from funding – if it is a choice between general taxation and insurance, general taxation wins hands down for me. Firstly, if NHS England wants to usher in a new age of personal genomics where risk of dementia can be predicted quite accurately to some extent, this can impose an information asymmetry unless there is full non genetic discrimination which would make the operation of private insurance markets unworkable. Also, if you wish to send out public health messages about prevention and risk reduction of dementia (and we know they’re unreliable – for example low education is a risk factor for dementia allegedly, and yet Ronald Reagan, Harold Wilson and Margaret Thatcher are all described as developing dementia in their latter years), then it falls within the scope of private insurance providers to invalidate your insurance if you do not disclose or misrepresent your lifestyle having taken out a policy (i.e. you claim to eat and smoke within safe limits, but you don’t, and actually are putting yourself at higher risk of dementia.)

Taking back control over dementia policy is going to be tricky, but in the same way immigrants are not to blame for the quality of your public services, the number of older people or people with dementia should not be blamed either. The future is a different place – they do things differently there.

 

@dr_shibley

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The need to add light not confusion in navigating our way forward

Not all change is progress. It would be tempting to consider this as ‘dark times’ with certain domestic and international events having happened, but it’s probably worth remembering that these events have probably happened for a reason.

Not all power is influence. The problem of course with cosying up to other power is that you can lose influence. This might happened with certain big charity we all turn to, to lead the way. Nowhere was this witnessed more bitterly in recent times as in the ‘social care crisis’ which headlined on the news. No amount of public concern, such as lack of funding settlement, social care quality and safety incidents, senior personnel in think tanks, senior politicians from all political shades, or reports even on BBC Radio 4’s Today, seemed to make any difference.

Seeing a way forward is crucial for helping persons with dementia and those who care for them. The answer of course does not lie in ministerial statements about electronic patient care records or GP access, but they are also pieces of the jigsaw to see the big picture. But what has concerned me is that people can know what  to expect following a diagnosis of dementia in England, and, more importantly, have confidence that the right people are helping them at all times.

The lack of ‘caring well’ in the NHS Transformation ‘Well Pathway for England’ revealed a real lack of understanding of what dementia is in policy makers in England. This lack of caring well sent out the clear message of a V sign to carers’ groups, the million or so unpaid family carers, respite care services, domiciliary care services and clinical specialist nursing care services, to name but a few, only to be replaced by other memes such as “training well” or “commissioning well”. Why stop there? Why don’t we measure the RTs of the CQC or NHS England, in “engaging well”?

Quite frankly, if there’s no caring well, it’s a case of leadership from the school of the blind leading the blind. There’s no point hundreds of thousands of pounds being pumped into metrics, if there’s no culture of wanting to commission services which represents the needs of people. This might include migrant populations with poor language and literacy skills in inner cities, or people resident in rural communities deep in the countryside. Or even hospices in England.

The old adage goes that if you value something measure it. Fine. But not all that matters can be measured. For example, in the drive to bump up diagnosis rates in England, were clinicians and persons with dementia themselves given sufficient freedom to take account of individual diagnosis-seeking behaviour? The issuing of a diagnosis of dementia is not like issuing a car parking fixed penalty fine. Where were the support services for the newly diagnosed persons with dementia? Or do the metrics cover, say, the attitudes of that one Roma person living alone in England with dementia, and her attitudes towards dying?

I believe that all people involved in policy in England should be aware of the enormous responsibility they have. I am not in a policy job, and do not have any vested interests, so please forgive me for speaking openly on this.

There’s been far too much protection of vested interests, and not working in a collaborative sense for fear of diluting a personal brand. There’s been a historic lack of respect for the social care profession, and I believe you can see the roots of this as far back as in the 2012 Prime Minister’s Dementia Challenge. In a way there’s been too much deference to power, when some of it’s been the ‘wrong power’. Would the right power have been so relaxed over a social care system being brought to its knees due to years of underfunding?

There’s been too much policy being repackaged in cycles of a few years, without insufficient progress. I think promoting the wellbeing of people, and encouraging social health, is at the heart of social care, and, for dementia, so is an understanding of mental health, and yet the social care is still not being given enough tools ‘to do the job’ properly. It seems almost that commissioning a cheap lapel badge of friendship will instead suffice.

There’s been insufficient critical thought of the ‘dementia friendly communities’ policy. I believe most strongly that there’s been massive progress in community engagement, and substantially more meaningful leadership from persons with dementia and carers. Don’t get me wrong. But there was also a nasty undercurrent of ‘we don’t believe in society’, where the ‘evil State’ would be replaced by localism (and devolution), “a call to social action”, and ‘public service reform’ – but, this really meant, in the age of austerity, this meant getting rid of life-maintaining lifelines for people with dementia and carers. But if you don’t believe ideologically in society, and can market community initiatives through strong brands and award ceremonies, it won’t matter if A&E targets aren’t met, care packages aren’t ready, and delayed discharges are through the roof.

The argument that I am partly making is that in the last few years, due to a combination of reasons, not least derision of academics and practitioners/professionals in dementia, things have been made unnecessarily worse by adding a lot of unhelpful red herrings to policy. But a lot of good has also been done.

What worries me now is that I can’t name a single person who has a handle on the big picture – whether that’s on the genuine issues of safeguarding in personal budgets, or provision/equity of palliative care services in dementia – at a national level. This is symbolised by the fact that we don’t actually have an English dementia strategy, and haven’t had one since 2014. Somehow some amazing initiatives, such as Dementia Care Mapping, haven’t been snuffed out by the overwhelming sense of confusion in national policy. Or the fact we know many care homes will now have to shut down because of financial pressures on small providers doesn’t extinguish some remarkable people who do work in the residential care sector.

What is the number one solution? I think money won’t solve everything, but Sustainability and Transformation Plans, with all the best designs in the world, will not work unless properly funded likewise. Also, I think it’s time for the correct voices to step up to the plate and get louder, such as unpaid carers or aspiring recipients of domiciliary or residential care, or people newly diagnosed with dementia, and some of the incorrect voices who speak the loudest due to their big cheque books to shut up more.

That was easy wasn’t it? Bah humbug.

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Enhancing health and wellbeing in dementia: a person-centred integrated approach, reviews

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This is a book all about a possible integrated care pathway for dementia. It places at the heart of the narrative a person who’s received a diagnosis of dementia and the people who care for him or her, so nobody is left behind.

Thanks to the following for their pre-publication comments for my book to be published on 19 January 2017. I should like to thank all of the people below for considering the whole manuscript before offering the following responses.

The abbreviated comments are also provided on the Amazon UK page for my third book on dementia.

 

‘This important book continues our journey of what it means to see the person beyond their diagnosis of dementia, with a fresh focus on freedom, dignity and human rights. Dr Shibley challenges the idea that nothing can be done to improve dementia care. He brings practical thinking around how we can move towards truly integrated, person-centred ways of working – making a timely and valuable contribution to our collective understanding.’

– Dr Helen Sanderson, author of Person-Centred Thinking with Older People

 

“There can be no doubt that ‘Enhancing Health and Wellbeing in Dementia’ should be essential reading for anyone with an interest in improving the lives, and rights, of people living with dementia. It is an important book which is both comprehensive and practical – no easy matter to achieve! His encyclopaedic span concludes appropriately with the primacy of person-centred approaches, the importance of dignity, quality and leadership – yes, yes, yes!”

– Des Kelly OBE, Chair, The Centre for Policy on Ageing

 

 

“Shibley’s voice has emerged as an important one to take notice of within dementia care. His ability to draw together a huge range of knowledge from many different spheres of research, practice and policy and to use it to light our way rather than confuse us further is unique.”

– Prof Dawn Brooker, Director of the Association for Dementia Studies at the Worcester University, UK

 

“An absolute gem of a book. Through his career, Shibley Raman has been sequentially academic neurologist, service user, family carer and blogging activist. His learning and wisdom have been distilled into a highly readable, comprehensively referenced and bang up-to-date companion for anyone who needs to learn and understand about people with dementia and what can be done to help them, their families and professional carers to get the very best out of life.”

– Prof Robert Howard. Division of Psychiatry, University College London

 

“Practitioners, family carers and people with dementia looking for a comprehensive resource about dementia need look no further. Few books combine detailed explanations about clinical aspects of dementia with policy analysis and yet remain so centred on people’s individual experiences. This is an important resource for anyone who wants to understand more about providing better dementia support.”

– Jo Moriarty, Senior Research Fellow and Deputy Director, SCWRU, King’s College London

 

“The third of Rahman’s books on issues relating to dementia. Another must-read text that discusses the many and varied elements of what is required to enhance the lives and wellbeing of people with dementia. I particularly like his style of telling us what we can expect to learn from each section and suggestions for further reading.  This, as well as the first two books from the author, is an essential read for all health and social care students in gaining an overview of caring in dementia.”

Dr Karen Harrison Dening, Head of Research & Evaluation, Dementia UK

 

“This is a complex and difficult journey and Dr Rahman’s book is like having an informed, interested, intelligent and profoundly humane friend by your side on the journey through. This book is a friend that is encyclopaedic in knowledge and who is not afraid to have opinions and to express them. We are part-way along the journey, we have come a long way but we have far to go. This book helps us reflect on where we are and the road we have travelled, all the better to plan and travel the road ahead.”

Prof Sube Banerjee, Chair of Dementia Studies at Brighton and Sussex Medical School, co-author of the English dementia strategy (2009) “Living well with dementia”

 

“‘Great book on integrated, person-centred dementia care. Clearly identifies issues often overlooked: importance of relationships in delivering good care; pivotal role of care homes in caring for people with dementia; and value of addressing staff needs so they can be in good relationship with others. It’s not rocket science!’”

— Prof Julienne Meyer, CBE, Professor of Nursing: Care for Older People and Executive Director: My Home Life, City University London

 

“This is a wonderful book, for students, health professionals, researchers, policy makers, politicians and families, and for people who may be in the early stages of one of the diseases that causes dementia. This is a book that challenges but also gives hope. Which I think is the greatest gift of all.”

—Lisa Rodrigues, CBE, writer, coach and mental health campaigner, www.LisaSaysThis.com

 

‘Shibley Rahman’s last book in his trilogy on dementia represents a comprehensive and thought provoking tour de force through the subject matter – great reading for any health and social care professional, academic and interested lay person. Here is a perspective from an author who in himself integrates academic qualifications in medicine, law and management with a lived experience of disability. A unique read!’

— Reinhard Guss, Chair, Faculty of the Psychology of Older People, British Psychological Society

 

“What they all have in common is a need for health and social care professionals to come into their lives with understanding, and a recognition of the need for the diseases that cause dementia symptoms to be understood, so that the person or their carer never feels they are being led blindly through our health and social care systems. They don’t need us all to be experts in the scientific constructs of dementia, but they need us to know enough to respond sensitively and with confidence.

A better understanding of what person-centred care is, in the context of dementia, is what will help us to achieve this. I am hopeful that this book will  appeal to specialists and non-specialists alike, and that it will inform and influence professionals who support people living with a dementia.

This book is an important milestone in Dementia Care literature as it provides information to help us answer the difficult questions we face as professionals helping to support people and families. The different types of dementia all have in common that they cause a person to have needs around changing health and wellbeing. The discussion flowing through this book, points to where the answers are to improving how we meet those needs.”

— Lucy Frost

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Honey, I shrunk the dementia-friendly State

“I think most people thought the Big Society was utter drivel.”

Those were the words of Ian Birrell, journalist and political commentator.

The election result for David Cameron MP was disappointing. He had the opportunity of a lifetime to win a resounding majority for the Conservatives, despite the undoubted unpopularity of Gordon Brown as Prime Minister – and he blew it.

The 2010 manifesto for the Conservatives, unusually, was a big hardback book, acting as an ‘invitation for government’.

The Big Society was the theme which ran all the way through it, but it was an innovation which didn’t get adopted. The strands through it were devolution and localism, radical public service reform and social action. Voluntarism was important.

What’s there not to get excited about? Dementia friendly Manchester, personal budgets, Dementia Friends. Some winners have taken all.

The multimillion pound Dementia Friends project was a magnificent opportunistic brilliance from the Alzheimer’s Society, as they were able to secure money for dementia ‘knowledge and awareness’ which fitted in nicely with the Big Society.

It fitted in with the sweeping Lansley reforms, later known to be disastrous, which surrounded the Health and Social Care Act (2012), which Baroness Shirley Williams was critical in aiding and abetting despite initial reservations. This staple gunned private market competition and commissioning onto an already sick private market in health and social  care.

Nick Clegg MP also had a natural anti-state liberal sympathy, which fitted in nicely with the strongly ideological thrust of David Cameron’s ideas, camouflaged in a compassionate soft shell. The community would take the place of the State – and it work for the dementia friendly community too…

Many people resented the idea of the State delivering health and care, in the name of people reaching into their pocket to be ‘public spirited’. This could mean donating time for Dementia Friends, or donating money to boost Alzheimer’s disease drug research.

The idea that Britain stopped being a nation but being a burgeoning welfare state has of course been capitalised by UKIP to much success, which arguably helped to precipitate a win for #Brexit.

The spending cuts accompanied the re-invention of the State, and this was seen as an opportunity by the Coalition government 2010-5. Social care was no longer ring fenced, and it became clear despite public noises to the contrary from David Cameron and Theresa May later that NHS spending did not match the increase in demand.

These cuts immediately got in the way of what the Big Society was meant to achieve. The same thing is happening now. With cuts in NHS and social care, patients with dementia cannot be discharged from hospital due to social care cuts – care packages aren’t ready, which means that patients cannot be admitted to hospital. Despite all the multimillion pounds spent on Dementia Friends, dementia care has never been in such a parlour state.

Nowhere is this seen more clearly than in the airbrushing of ‘caring well’ from the NHS England Transformation path for ‘Well pathway for Dementia’.

dementia-well-pathway

Austerity was a political choice, not an economic one as is clearly seen from the fact that national debt has gone through the roof between 2010 and 2016 – further squeezing the ability of the State to deliver dementia care.

The Coalition government did not actually re-distribute the power to the society, nor did they improve democratic representation, leaving civil democracy untouched. So the entire thing had the look and feel of a trite marketing brand – and this is exactly what the English dementia policy sadly now has become.

With the disappearance of the State, respite care, domiciliary care and the capacity for clinical specialist nurses have all been sidelined as a low priority compared to getting a plastic ‘Dementia Friends’ badge for your lapel – this is, of course, a crying shame.

This year’s Autumn Statement was one of the final nails in the coffin. There was no mention of the additional money needed to make the Better Care Fund work; not even that, the ‘precept’ and the Better Care Fund were heralded as reasons by the Government for why social care has never had it so good.  With the Conservative majority government now delivering ‘Brexit’, and likely to campaign on in 2020 with the ‘let’s finish the job we’ve started’ mantra, and with SNP retaining Scotland, and UKIP chipping away at some Labour votes, it is not inconceivable there’ll be another Conservative majority government in 2020.

Dementia policy has become deeply ideological politically – and this is a total disgrace.

And with that you can say a final goodbye to the dementia friendly State, a policy which has scant regard for huge swathes from clinical specialists, social care practitioners to hospices. But fear not – there’ll be only five years to wait for one of the many cures for dementia on the horizon.

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