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    The opening gambit for anyone criticising plans in health and social care was to mention at the first opportunity Stalinist Russia.

    That is of course a ‘cheap shot’.

    Would a rose by another name smell as sweet?  The Department of Health published in 2009 a dementia ‘strategy’ which set out important goals, and has published subsequently different documents under different names such as “The Prime Minister Dementia Challenge” or “The 2020 Implementation Plan”.

    It is perhaps time to face facts. Talk is cheap. It’s much easier to talk about ‘England is the best place to live with dementia’ than to put an adequate level of funding into the NHS or social care.

    It is easier to say you have amassed X million ‘Dementia Friends’ without thoroughly looking at the impact of what this new level of knowledge has been, for the general public, in a coherent review.

    I can’t help thinking that the main beneficiaries of national plans are not people like me, care partners of persons living with dementia. Nor indeed do I think the main beneficiaries are people living with dementia.

    Sadly I think the main beneficiaries are the consultants who seem stuck in a rotating door of commissions from charities churning out these reports every other year.

    I ‘googled’ some of the reports for fun earlier this afternoon, and unsurprisingly found the same sort of stuff being regurgitated at regular intervals, such as ‘dementia awareness’, ‘investing money in dementia research’, ‘building dementia friendly communities’, ‘educating the workforce’.

    People who regularly appear in conferences or in charity meetings know this language well. I was reminded that in the ‘G8 dementia’ initiative a cure or a disease-modifying drug would be presented to the world by 2025.

    I was bemused at the list of different WHO/UN initiatives done in the name of people of dementia over the years, listed in the newly published WHO report on ‘national plans’.

    The ‘big selling point’ of these national plans is that we can all learn from each other.

    And how exactly? What are we learning about how doctors from The Gambia diagnose dementia diffeerently from Venezuela? What do we deduce from the different ratios of private / public funding and how this impacts on dementia care in the UK compared to France?

    Do we get anything meaningful from these national plans about ‘workforce planning’?

    Does anyone actually believe that people largely live with only one diagnosis, that of dementia? Are we still further defining people by the name of their diagnosis rather than their actual needs including disabilities?

    Dementia charities deal only in dementia. That is their brand.

    For all the big words about ‘civil society’, we clearly have a problem with the way ‘the State’ ‘business’ and ‘other’ can collude with each other to generate competitive advantage, to the point of being near-monopolistic in providing ‘dementia friendliness’ for example.

    And why might you get prescribed cholinesterase drugs in one country and not another?

    I’m of course not saying that dementia charities have no impact. I concede they fund research, based on monies (some in part given by people thinking that a cure is ’round the corner’).

    And their senior officers will have no problem getting future recognition or employment.

    The stakeholder groups get a mention – but it’s merely that.

    I recognise marketing when I see it. ‘Dementia plans’ are the worst type of lazy man’s campaigning device, and in fact possibly do more damage than good – divert funds into projects being seen to doing something worthwhile rather than actually improving the experience of people with dementia or care partners.

    Is the UK fundamentally a better place from having so many new Dementia Friends? We don’t know as the study has never been published.

    A revolving door gravy train. Pure and simple.




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    As far as bandwagons go, ‘friendly communities’ take some beating.

    There is a palpable momentum behind big charities politically endorsed to promote a ‘friendly community’, with champions and award ceremonies.

    The official reason for ‘dementia friendly communities’ is actually unknown.

    As part of David Cameron’s “Prime Minister’s Dementia Challenge”, the ‘dementia friends’ campaign suddenly emerged from the Alzheimer’s Society and Cabinet Office.

    A few million pounds were pumped into it, including slick PR and advertising campaigns. The new incoming Coalition government promoted it, just shortly after the 2009 English dementia strategy.

    The aim, we think, was to ‘raise awareness’ of dementia.

    It was argued that the public understanding of dementia was poor, and such a campaign to improve people’s knowledge of dementia would help to combat the stigma. It was argued that dementia is the most feared condition in adulthood, and stigma could produce negative consequences such as loneliness.


    But we actually don’t know at the end of this lengthy experiment whether, on the whole, the public’s knowledge of the hundred or so dementias is any better, whether stigma has been reduced, or whether people are any less lonely.

    The business cases for promoting all types of ‘friendly communities’ are broadly similar, even if the substrates may differ. For example, autism may be a neurodevelopmental condition; dementia is definitely neurodegenerative.

    It may be more appropriate to want to achieve equality for people with dementia, but recognise diversity for people with autism?

    But should we reducing individuals with unique identities into large masses or groups of people who are best described as ‘heterogeneous’ in form, anyway?

    Of course, politicians and possibly charities don’t actually care.

    Let’s get down to basics.

    It is argued that there might be a better customer experience for people with dementia or autism in certain high street shops.

    Dementia in McDonalds, but autism in Burger King? (This is a made-up pair of examples, by the way.)

    The arguments have always been too flimsy for words. None of it really stands up, and it was inevitable that many people would get on the bandwagon to receive monies for the concept – somehow.

    One only has to give it a few minutes’ thought to realise what the enormous problems with it are.

    If your community is friendly to people with dementia, is it a requirement that people with dementia should declare themselves to have dementia?

    Is it necessary that people should ‘out themselves’ for having a private diagnosis, even if you’re not a well known celebrity?

    Or is a dementia friendly community a community which happens to be ‘friendly’ to a person with dementia?

    Do we include care partners here? The person with dementia has to make no public declaration in entering a shop?

    Is it, also, really the case that each political party should have a different condition such as autism or dementia to advocate a ‘friendly’ community for? One has to worry, surely, if different high street shops are promoting different conditions to be ‘friendly’ towards to secure competitive advantage?

    It all seems to be following a remarkably consistent formula.

    Autism-friendly communities have similar aims to dementia-friendly communities.

    For example,

    “We need more autism-friendly organisations across the UK. The Autism Friendly Award makes businesses more accessible and helps open up public spaces to autistic people and their families. Whether you’re a business trying to include more customers, or an autistic person trying to make the most of your community, our award can help.”

    Autism, like dementia, has patient champions touring the conference circuit, and has social enterprises ‘giving them their voice’.

    Somebody once told me – whenever you think of empowerment, ask yourself who is doing the empowering?

    The promotion of different sets of guidelines for condition-friendliness possibly encourages one to think of what particular needs are unique to people with dementia or autism? However, it could also be the case that we become paralysed by analysis over what interview techniques or shopping environments might be particularly condition-friendly?

    It might be that the development of ‘friendly communities’ produces a genuine approach of ethos and inclusivity.

    Lyn Romeo, the Chief Social Worker, for example in discussing ‘autism friendly communities’ comments:

    “As social workers, it is our privilege to make a positive impact in helping to promote the independence of others. Liverpool’s enlightened approach to the health and wellbeing of all its citizens echoes the values of our own profession and I look forward to finding out more on my next visit to this wonderful city.”

    And actually does it make any difference to post-diagnostic care.

    Robin Bush, CEO of “Autism together, notes that:

    “But what about the Liverpool families waiting months for an autism diagnosis or post-diagnosis support? What about the lack of respite care for families in need or suitable accommodation for those on the spectrum able to live independently? And who decides when a city has become autism friendly?”

    The latest incarnation of the post-diagnostic support guidance from the Department of Health and Social Care is full of the same empty promises which have populated English policy since 2012. There is no funding for a network of national care co-ordinators, by the way.

    That was ditched when Labour lost the general election of 2015; prior to that Andy Burnham, now Mayor of Manchester, had advocated this for his ‘whole person care’.

    As a supporter of the Alzheimer’s Society said recently, “How everything is changing but nothing has changed”

    It could be that people are genuinely ‘friendly community”-ed out.

    As written in the Spectator,

    “We don’t need such tokenistic gestures, but that’s all we get because the issues we face can’t be solved so easily. By supporting such schemes, politicians are using my condition to score points. Andy Burnham actually appeared at an autism-friendly hustings before the Manchester mayoral election. That’s a nice photo opportunity, but is he willing to do the hard work that’s necessary to improve the lives of people with autism?”

    It could be just that it’s a form of marketing, a vote winner, a mechanism to get a gong, a mechanism to get a grant awarded, a mechanism to distract from failures in social care or mental healthcare provision, a mechanism to drum up customers, and it’s nothing to do with inclusivity and accessibility at all.

    But I would never be that cynical, would I?




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    Culture can be elusive, “because much of it is anchored in unspoken behaviors, mindsets, and social patterns.”

    My reaction when somebody makes a “pledge” is to wonder whether anything will in reality actually change?

    For example, the former Prime Minister David Cameron MP promised a ‘cure for dementia’ by 2025. That’s only another seven years to go. Actions speak louder than words?

    We now know that there’s also probably more to ‘dementia friendly communities’ than an enhanced customer experience for people with dementia or their care partners.

    If you say that “actions speak louder than words”, you mean that people’s actions show their real attitudes, rather than what they say.

    Words can hurt and cause distress, and, yet despite the well funded campaigns for dementia empowerment and engagement, newspapers continue to be littered with headlines referring to ‘dementia sufferers’ or ‘dementia victims’.

    The Alzheimer’s Society is running ‘Dementia Action Week’ next week, 1 – 27 May 2018.

    On their website, the Alzheimer’s Society claims:

    “Big or small actions can improve the everyday lives of people affected by dementia. Which actions have had an impact on you or someone you know? Share your story on social media to get people talking and learning about how to make a real difference.”

    If you think you’re too small to make a difference, you haven’t spent a night with a mosquito, according to the African proverb.

    According to much contemporary thinking, “traditional hierarchies” are based on job titles, are somewhat fixed, and define management and communication pathways. Meanwhile, “dynamic hierarchies”, on the other hand, are based on who has the most knowledge and experience in a specific context.

    But the issue is that, in any system with humans in it, power relations exist, whether you formalise them or not. That means that certain celebrity speakers at dementia conferences are perceived to have more important and valid “lived experiences” than others.

    We can all make a difference.

    The APPG on dementia is currently calling for evidence into an inquiry into dementia and disability.

    Interestingly, one of the questions is, “ What do you think are the main challenges that people affected by dementia face in day-to-day life (for example using transport or in employment)?”.

    Pat McFadden MP has recently launched a scathing criticism of the Personal Independence Payment (PIP) scheme, outlining that every PIP assessment appeal in his constituency had been overturned on appeal.

    He has argued that “this system is broken, inhumane at times, and in urgent need of fundamental change.”

    One of the other questions asks, “ Do you feel that people with dementia are treated differently to people with other health conditions or disabilities?”

    Dementia is a disability under the guidance to the Equality Act (2010).

    The advice on the Royal College of Psychiatrists website indeed cites that:

    “The types of ‘reasonable adjustment’ that can support people with mental health problems stay productive at work are changes that are relatively easy and inexpensive to put in place with some thought and preparation. It is also worth reminding your patients that many people without a disability or without a mental health problem need to make changes to their work patterns and conditions. Some people need more flexible working conditions because they have caring responsibilities, others with long term or fluctuating health conditions also need to make changes to the way they work.”

    Examples of ‘reasonable adjustments’ might be appointing a ‘buddy’ or ‘mentor’ – someone on a similar grade and outside the usual management structure – to show the new employee the ropes and help them settle in to the workplace, or enabling a person to arrange their hours to permit them to attend a weekly therapy session.

    So, a pledge made by an employer to make his business a ‘disability inclusive culture’ would be meaningful.

    Arguably, there needs to be proper education and training in organisations about what ‘disability inclusive cultures’ are, and this would go far beyond the superficial marketing of dementia friendly communities.

    A helpful description is here:

    “ When workers with disabilities experience the benefits of an inclusive culture, they are likely to be more satisfied with the job and often correspondingly more loyal and invested in the work product and performance. In addition, a disability-inclusive culture often will provide positive results for overall employee satisfaction and productivity among workers with and without disabilities. This occurs because when an organization commits to equity, flexibility, and professional development for workers with disabilities, it frequently will generate more employer responsiveness to the individual capacities, health needs or varying work preferences of employees who may not identify as people with disabilities. In other words, inclusive cultures promote healthy and functional organizational environments.”

    Recently, Finian McGrath, the Minister of State with responsibility for Disabilities, officially marked Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities at the United Nations in New York. Despite signing up to the Convention in March 2007, on the first day it was possible to do so, Ireland was the last EU country to ratify it.

    It has also been reported that in Ireland, a theatre, which is based in Celbridge in Co Kildare, was founded in 2014 by theatre artist and teacher Aisling Byrne, after six years of working with people with intellectual disabilities through St John of God Community Services Liffey Region.

    Byrne said the theatre’s adaptation of King Lear was inspired by the fact people with Down syndrome have a much higher chance of developing Alzheimer’s disease.

    It is hypothesised by some that King Lear lived with Lewy body dementia.

    Arguably, this simple example demonstrates core features of inclusive cultures.

    The theatre has sought to show: “representation” (The presence of people with disabilities across a range of employee roles and leadership positions), “receptivity” (respect for differences in working styles and flexibility in tailoring positions to the strengths and abilities of employees), and “fairness” (equitable access to all resources, opportunities, networks and decision- making processes).

    As you can see, it is hard to divorce the rights that arise from disability-inclusive cultures from legal rights arising from the UN Convention on Rights for People with Disabilities?

    Over the years, the term “dementia friendly communities” has spawn a perplexing plethora of definitions, but surely inclusivity has to be a central feature?


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    For the last ten years GPs have been paid, by the taxpayer, to deliver ‘general medical services’ through a scheme based partly on incentives. ‘Quality of care’ is assessed using an ‘outcome framework’ known as QOF, whose parameters relate to expected best practice when treating various long-term diseases. Someone with diabetes, for example, should have his cholesterol checked regularly, his blood pressure kept below dangerous levels, and be given medication to keep his blood sugar acceptable. At least once a year, I see all my patients who’ve suffered a stroke to check that they’re on the right treatment to thin the blood, to monitor their blood pressure, and to make sure they have been referred to appropriate specialists. Scores of outcomes like these are measured by each local health authority, and GP practices are funded in large part by payments derived through this scheme.

    There have been many criticisms of QOF: that it deprofessionalises doctors, that it encourages a tick-box approach to medicine, that it leads to diagnosis of conditions that a patient might otherwise never know they had (‘over-diagnosis’) and the treatment of which might be harmful. But on the whole the scheme has been accepted because it has been shown to improve some aspects of care, and because patients can choose whether or not to be involved. Every drug has side effects: driving blood sugar too low can make you feel dizzy and weak, and blood-thinning drugs carry a risk of haemorrhage that can be just as devastating as a stroke. I explore with each patient how tightly they wish to adhere to ‘best practice’, discuss which side effects may be acceptable to them and which wouldn’t, and generally tailor their care as much as possible.

    The government’s health policy reached new levels of absurdity last October, when it was announced that GPs would be paid £55 for every diagnosis of dementia they could enter in a patient’s notes. It was to be a short-term initiative, set to expire before May’s general election – it’s said the Department of Health was keen to meet a target. Simon Stevens, the CEO of NHS England, said that patients had a ‘basic human right’ to know if they were becoming demented. Jeremy Hunt, the health secretary, never one to boost morale when there’s an opportunity to attack it, called the level of dementia diagnosis in England ‘a national shame’. Presumably Hunt and Stevens took the purportedly low diagnosis rate as evidence of poor care, and intended the incentive scheme as an extension of QOF. But paying doctors to make a diagnosis is very different from paying them to maintain high standards. Diagnostic labels can prove stickily difficult to unmake, and dementia is diagnosed through a subjective clinical assessment rather than an objective blood test or brain scan. The tests examine memory and cognitive processing; many patients may meet the criteria for a label of ‘dementia’ one day, but not the next. Another difference is that in QOF, patients can decide whether or not to be involved in ‘best practice’, but they have little opportunity to challenge a new diagnosis.

    There’s something crucial at stake here about the new way of practising medicine. The extraordinary advances of the last fifty years in public health and specialised care have led to better and better life expectancies: millions now live for decades with diseases that once would have killed them in months. There was a time when, if you suffered a heart attack, you were given oxygen, morphine and nitroglycerin while doctors waited to see if you lived or died. Now you can expect to be rushed into a cardiac theatre, to have your coronary artery re-expanded with clot-busting drugs and a stent, then to be sent to high-dependency care, perhaps now with an intra-aortic balloon pump or ventricular assist device, possibly after that to receive a bypass graft, before ultimately leaving hospital on five or six new drugs, which you’ll take for the rest of your life. The massive expansion in the number of people who have survived strokes, heart attacks, cancer or any number of other afflictions, is a magnificent success story. But it also means that GPs spend most of their time managing the care of patients with chronic disease rather than those needing acute, reactive care. This expansion in the burden of care has taken place without any concomitant transfer in resources, which is one of the reasons so many people think it is easier to turn up at A&E, not the GP surgery, when they want a quick fix.

    Following the announcement of the dementia diagnosis initiative, a group of practising clinicians signed an open letter printed in the British Medical Journal and addressed to Simon Stevens and Alistair Burns (the national clinical lead for dementia) asking for the scheme to be withdrawn. Although the scheme was designed only for England, where England leads the devolved governments often follow, so although I practise in Scotland I signed the letter. The dementia scheme, the letter said, ‘set a dangerous precedent’. ‘There must be absolute surety that doctors have no other motivation than the patient’s best interests when they make a diagnosis. A direct financial payment like this undermines this confidence, and with it the basis of trust implicit in the doctor-patient relationship.’ The letter also pointed out that ‘to be given a diagnosis of dementia is challenging when the diagnosis is correct, but to receive such a label incorrectly can have truly tragic consequences.’

    Between 40 and 60 per cent of GP practices in England indicated that they would join the scheme – a lower proportion than most payment schemes. Many GPs went on the record to say they would donate any funds they received to local dementia services. Perhaps they wished to highlight the paradox that a diagnosis of dementia is only of use if it helps you get access to support services, but austerity measures in many local council areas have reduced these services substantially. A diagnosis can also be useful if it gets you a prescription for drugs to help you with your condition, but in the case of dementia there is no such drug. If the dementia is ‘moderate’, it is claimed that some medications can, in some cases, slow its progress by about six months – but they don’t reverse it, and after six months have ‘little or no effect’. They also have side effects: cramps, exhaustion and insomnia are among those commonly reported. Our letter to the BMJ made no assumptions about the reasons for the scheme – it may well have been started with good intentions – but others believe it was thought up because the government is in thrall to Big Pharma and, globally, dementia drugs are worth billions of dollars per year.

    At the end of November, a month after it was announced, Simon Stevens said that the scheme would not be renewed after March. But the damage has been done and a line has been crossed. This debacle is just the latest example of a medical culture, promoted by successive governments over the last twenty years, that rewards over-diagnosis and the prescription of drugs over personalised, professional care. Clinical trials, often funded by drug companies, show the benefit of a particular medication in a select population, usually people under 75, who suffer from a single or perhaps two conditions. Those results are then extrapolated to very different populations – older, frailer, more likely to suffer side effects and with multiple complicating conditions – and guidelines issued urging prescriptions of higher-dose drugs to these broader populations. The dementia initiative was unacceptable because it was the most flagrantly immoral example yet seen of the introduction of financial bias into what should be the protected space of the consulting room.

    It wasn’t always protected. In February 1948 Aneurin Bevan gave a speech to Parliament in which he deplored doctors’ resistance – organised by the BMA – to the establishment of a new National Health Service. Some doctors, Bevan said, talked as if their private practice was the glory of the profession. ‘What should be the glory of the profession,’ he said, ‘is that a doctor should be able to meet his patients with no financial anxiety.’ He wanted the issue of payment taken out of the consulting room, so that it wouldn’t taint the clinician’s decisions, or erode the patient’s trust. He urged the Conservative Party to help pass the act against the wishes of doctors’ representatives: ‘We ought to take pride in the fact that, despite our financial and economic anxieties, we are still able to do the most civilised thing in the world – put the welfare of the sick in front of every other consideration.’ It is a measure of the success of the NHS that it is doctors who are now defending Bevan’s vision, while the current minister for health would have us grasping after the money.

    This first appeared in the London Review of Books in 2015 and is reproduced with their kind permission.

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    f g n

    The most significant aspect of yesterday’s Budget was that UK growth is revised down last year, this year, and indeed every year it’s forecast. But it was the day last orders were given – failure to meet most targets, and more borrowing and national debt. The current Government boasts that it is only with a strong economy it can deliver on aspects of life, many of which are relevant to people living with dementia and all types of carers. But it is clear that the UK economy is still inherently weak. The concept of the ‘dementia friendly communities’ has been to the financial benefit of many people without dementia, but the key question remains about its license to operate from the perspective of people living with dementia and their significant others.

    Instead, as a question of priorities, corporation tax has been cut and billions being handed out in tax cuts to the very wealthy. This is unlikely to be exhibited in any significant improvement in dementia friendliness by multi-nationals and high street chains.

    It is right that the Chancellor has recognised the funding pressures facing councils and local services over the next few years and has not announced any more cuts to local government.

    But it is indeed disappointing that the Conservative Chancellor has not accepted calls by councils, the NHS, care providers and the voluntary sector to bring forward the £700 million of new money in the Better Care Fund by 2019/20 to this year. The failure to do so means vulnerable members of the community still face an uncertain future where the dignified care and support they deserve, such as help getting dressed, fed or getting out and about, remains at risk. This is the grim reality of what is marketed as ‘dementia friendly communities’ has come to in the UK, a concept which still continues to benefit some rather than others. This is at a time when the Government is known to be shifting priorities from dementia to diabetes, to which instruments such as the ‘sugar tax’ and obesity strategy might more directly speak to. The morale of people expected to deliver high quality care, including junior doctors and nurses, is at the lowest it has been for quite some time.

    Vital social care services are relevant to protecting and enable people in society, not just in relieving the massive problem of delayed discharges in the NHS. The threat of a care home crisis is still disturbing. The deficit in the NHS has risen to its highest level ever on record. Waiting times are up, the NHS is in a critical condition, hospital after hospital faces serious financial problems. The NHS should have the resources to concentrate on the health needs of the people, not do budgetary acrobatics to survive. With a distinct lack of influential people speaking truth to power, dementia policy in the UK is in a dire state.

    At a time when the Public Accounts Committee have only just reported that NHS finances have deteriorated at a severe and rapid pace, we do not just need gimmicks from charities loyal to Government of ‘fixing dementia care’.

    The whole system needs proper resource allocation so that people living with dementia can have their health and wellbeing enhanced, whatever the care setting. Mistakes here are compounded in a double lock from serious mistakes by Government civil servants in dementia. The recent Implementation Plan for the Department of Health 2020 document on dementia did very little to prioritise the importance of skilled workforce such as clinical specialist nurses in care pathways, and indeed was generally bereft of meeting the needs of people with dementia and carers in clinical settings.

    We have also seen devastating cuts to public health budgets and mental health budgets, further having a devastating impact on English dementia policy. Previous governments have touted the use of these tools as promoting ‘choice and control’, and yet the rhetoric is clearly mismatched to reality. Earlier this month the Government forced through a £30 per week cut to disabled ESA claimants. As dementia is a disability both under domestic and international legislation, it is hard to see how the UK wishes to promote international policy of sustainable communities and independent living for people living with dementia under the lens of disability rights.

    Finally, the UK needs to value and acknowledge the social capital of the huge army of upaid carers, as well as paid carers many of whom are afflicted by under-employment and insecurity. Security comes from knowing where your income is and knowing where your job is. We need to value all carers if the rhetoric of ‘dementia friendly communities’ is to have any substance.


    All in all the UK budget exposed the grim reality of “dementia friendly communities”, and the stark impotence of key individuals now to speak truth to power.

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    cake slice

    In the words of Ian Dury and the Blockheads, there are indeed “reasons to be cheerful” about the English dementia strategy. We need a strategy, but we need to think about the imperative for “the cure” while appearing to neglect finer details of care. Furthermore, the actual quality, as well as quantity, of diagnosis merits scrutiny.

    The need for a strategy

    Our English dementia strategy has some key prongs from the clinical perspective – prevention, diagnosis, care, support, palliative care/end of life approaches and cure. How these components are balanced has practical implications for funding and resource allocation. Underpinning this is the need for high quality research, in both cure and care, qualitative and quantitative, non-molecular and molecular, and so on.

    England currently does not have an up-to-date dementia strategy. The last ‘five year plan’ expired in 2014, and was supposed to be renewed. Baroness Sally Greengross, the previous chair of the All Party Parliamentary Group on dementia, made clear many times that the intention would be to recapitulate what had worked (or not) in the document from 2009 before progressing. This work, if indeed done, has never been published to the best of my knowledge.

    There are regional differences in national strategies, although the benefits of national plans have been described at great length elsewhere (an initiative spearheaded by the charity Alzheimer’s Disease International). Many feel that the first and only English strategy to be published by the Department of Health so far, entitled “Living well with dementia”, is very heavily weighted towards diagnosis and combating stigma through initiatives such as ‘dementia friendly communities’. This is in comparison, say, with the Australian jurisdiction which emphasises, it is said, primary care.

    Karen Dening last year mentioned in the Dementia Congress in Telford that cooking dementia policy was ‘like cooking a cake’. Karen who is Director of Admiral Nursing for the leading charity Dementia UK, explained that making a cake required an understanding of the fine balance of ingredients. Too much of one ingredient (or too little) could spoil the cake.

    The importance of the cure but at what cost?

    Indeed, the meme “care for today, cure for tomorrow” does merit scrutiny. Take ‘the cure bit’ for a start. In the same way that medicine might provide a cure for a type of cancer, such as an aggressive haematological condition, it might provide a cure for a type of dementia. In other words, in reality, the ultimate “cure for dementia” is likely to arrive in an incremental, piecemeal, gradual fashion for different types of dementia. And the unexpected might happen – for example, immunomodulators might find a ‘new market’ disruptively in the “fight against dementia”.

    You don’t routinely ‘cure a headache’ with radical neurosurgery consequent upon sophisticated neuroimaging? You are likely to treat the symptom with a paracetamol. And the same logic goes for asthma and bronchodilators. In the history of drug development for dementia, the debris of “repeated and costly failures” is a formidable one. But then again no omelette was ever made without cracking eggs. It is said, for example, that between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease.

    In the phase before the theoretical obliteration of dementia in some future year, it is likely that care will also be required for tomorrow as well. This is because in someone who is being tried on an orphan drug for dementia a management strategy is likely to include also cognitive techniques, such as cognitive stimulation therapy, currently being examined for the NICE guidance on dementia to be published soon.

    Nonetheless, any cures for dementia are to be welcomed not least because they offer hope. The worry, of course, is that there is a “zero sum gain”, in that if people are reaching for their pockets to fund research charities they are less inclined to fund social care for people living with dementia for today.

    We have to talk about care

    Even with talk of “precepts” from the Budget of last year, social care, not having been ringfenced since 2010, is still on its knees. Public health, which is supposed to deliver the risk mitigation strategy, for dementia has also been an unwise cost saving.

    Social care is not essentially about bailing out the NHS in its ‘funding deficit’. It is as a profession concerned about enabling and protecting its client group. I feel few areas are as important as dementia for this.

    Dementia, unlike cancer, has no specified “care pathways”. There are more than a hundred causes of dementia, depending on how you count them, and indeed every person with dementia is a unique individual. Integrated person-centred care pathways, and advance care planning especially in light of substantial comorbidities (involving of course carers), would do much to mitigate against the confusion and uncertainty which often accompanies the subsequent trek of a person with dementia through the maze of services.

    The minimisation of the rôle of clinical specialist nurses, unlike cancer, is a deeply embarrassing one. The repercussions on the weaknesses in pursuant policy, including continuity of care in different care settings and delivery of palliative and end-of-life approaches, are glaringly obvious to clinicians currently working in dementia care today.

    Prevention and seeking the diagnosis

    The ‘healthy body, healthy mind’ campaign makes sense in a view that the prevalence of dementia in England  has been said to be falling. There are of course exceptions to every rule. We are all aware of people who’ve completed a healthy treadmill stress test for angina, without problem, only to fall dead in the car park.  Being educated, described as reducing your risk of dementia, did not stop Dame Iris Murdoch or Baroness Margaret Thatcher developing dementia. But progression also means preventing dementia progressing at a fast rate – in the future, maybe wearables and other technology might help in real time.

    A starting point is that many did not receive a diagnosis for dementia, and the UK lagged behind some other countries on this particular metric. How a person or their closest ones seek a medical diagnosis for dementia was not straightforward, even before NHS England introduced its disastrous, and ultimately temporary, initiative to provide financial incentive for the diagnosis of dementia. A lot depends on the coping strategies of the people seeking diagnosis, as well as whether the benefit of a diagnosis is more beneficial than any ensuing stigma. But there’s a whole host of factors involved in diagnosis seeking behaviour which still need attention – e.g. general level of public ‘dementia awareness’, identification of relevant symptoms, and so on.

    Many people report being “terrified” of then going to memory clinic, and a long wait is akin to ‘justice delayed is justice denied’. But an accurate diagnosis of dementia is important ultimately. General practitioners, already facing a bureaucratic and demand tsunami, may not have adequate resources or training necessarily to feel comfortable, although there is no reason why general practitioners cannot be also the ‘specialists’ making the diagnosis.

    But likewise, people with unexplained symptoms, languishing without a diagnosis, is not on. People do deserve to know what medical diagnoses might apply to them. Physicians and other professionals would prefer people living with dementia not to be propelled into a crisis or move to residential setting involuntarily.

    Furthermore, there is a school of thought that a correct diagnosis of dementia sums up the notion ‘knowledge is power’. Armed with the information, you can make reasonable adjustments just as for any physical disability, for example memory or visual aids, better signage around your accommodation. It gives you better bargaining power as an upholder of disability rights, as well as gives you specific opportunity to plan for the future, for example power of attorney or will, (on legal loss of capacity or ultimately death.)

    Whilst there is a huge emphasis on diagnosis in current English dementia policy, there is consensus that the quality of how the actual diagnosis is closed could be improved in very many cases even now (see an excellent review here).


    With so many vested interests involved, the cooking of this particular cake is bound to be complicated. But hopefully with time issues will become much clearer. This is ultimately for the benefit of persons with dementia and their closest ones.

    [The author, Dr Shibley Rahman, of this blogpost (@dr_shibley) is an academic physician specialising in dementia. BBC Radio 4 will air a programme in the ‘File on 4′ series entitled “Has a drive to increase the diagnosis and find a cure been effective?’ at 20.00 on 23rd February 2016, presented by Deb Cohen (producer, Paul Grant). Details of this episode of File on 4 are on the BBC website here.]

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    “Your perspective on life comes from the cage you were held captive in.”
    ― Shannon L. Alder

    I remember once on BBC Radio 4’s “Thought for the Day”, the Chief Rabbi once said that the best thing about walls was when you broke them down.

    With having developed a profound dislike of ‘managerial speak’, I am loath to want to talk of ‘breaking down silos’. I rarely see silos in fact, being based in deepest metropolitan London.

    Yesterday, I took receipt of an advance copy of “What the hell happened to my brain” by Kate Swaffer. Kate is a friend of mine, and a (more accomplished) colleague in the area of dementia. Kate in fact was given a diagnosis of dementia. It’s an outstanding book if you want a very fine grain account of one person’s life reacting to a diagnosis of dementia (and the impact this has on others).

    I freely admit, now, having worked both on the wards and in research on dementia that I had barely scratched the surface. In my research degree at Cambridge, I proposed a new way of diagnosing one of the frontal lobe dementias, characterised by changes in behaviour and personality. But I think on reflection I knew little of the impact a diagnosis of this type of dementia has on families.

    A few years later, I was a junior at the National Hospital for Neurology and Neurosurgery. I remember clerking about 15 elective patients weekly, and organising their investigations (as well as doing their lumbar punctures), in addition to the emergency work. But I knew very little of their individual “back stories” personally.

    The focus of the discussion of healthcare tends to be focused on physical silos, such as how health and social care are organised differently. But even now I don’t think I have a clear idea about what each of the various health professional groups can do for a person with dementia (and their closest). I would like to think I know better than some, but that might be human nature.

    I think even as a junior I would have benefited from work shadowing people working in other disciplines, but, with such a packed medical undergraduate timetable, this might have been a luxury too far. The fact is I had one hour-long lecture in the whole of my clinical course on dementia, and even then that was ‘bundled’ with delirium.

    The legal part of my training has to think about how necessary and proportionate these ‘walls’ are. Walls can be important in marking the boundaries, say for example if you don’t want confidential information ‘to go walkies’ into the wrong hands. To give as an example, you might be denied an insurance policy, or offered one at a vastly inflated premium, if somebody somewhere had scribbled ‘incipient dementia’ as a guess in your medical notes somewhere.

    When studying business management, we would often discuss ‘performance management’, a term I personally hate. I think of it in terms of ‘how to get the best out of people’. These shorthand terms tend to do actual ideas a gross disservice. For example, I have found excruciatingly embarrassing the attempts of some senior clinicians to define the purpose of “integrated care”, when I see the focus, in the area of dementia, as persons having their needs attended to in the right place, in the right way at the right time.

    In discussing performance management we would discuss whether you needed first-hand experience of a subject to give it a 360 assessment. The answer, to the question framed by managers, was unsurprisingly no – but it is also that it is the case that there is a very well known Professor of Psychiatry at John Hopkins University who lives with bipolar affective disorder.

    Language is a powerful way to impose walls, and indeed power. The term ‘dementia sufferer’ is one such example, although I do not for one minute deny that there are some people who suffer. I think the term ‘dementia friendly community’ in the wrong hands can invoke a spirit of ‘does he take sugar?’

    When I personally found myself taking on a new identity as a result of becoming physically disabled, when I was in a coma with acute meningitis, in 2007, I became more aware of walls in my life. Although this was a sad event in itself, it was also a very happy one for me – it heralded the start of my abstinence and recovery from alcoholism. A journey which has taken me eight years so far, successfully.

    So I would like to conclude with this:

    “There are four kinds of people in the world, Ms. Harper. Those who build walls. Those who protect walls. Those who breach walls. And those who tear down walls. Much of life is discovering who you are. When you find out, you also realize there are places you can no longer go, things you can no longer do, words you can no longer say.”

    ― P.S. Baber, Cassie Draws the Universe

    Anything can happen to anyone at any time.

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    I spent a lot of time physically in Manchester, for one reason or another. As a ‘Northern power house’, it happens to be only two hours away from London Euston on the train.

    When news of the ‘People’s Republic of Manchester’ was breaking last year, I remember the criticism that came with it from the NHS policy stream. That is, locally devolved powers might undermine the national nature of the health service. At worst, the devolved Manchester was also devolving blame for cuts to a local level.

    It’s possibly no coincidence that Phillip Blond has been involved with both the DevoManc agenda and the Big Society. In terms of the ‘Big Society’, one of Blond’s fundamental arguments can be interpreted as that ‘the left’ did not actually deliver on its communitarian politics.

    One of the central premises of the Big Society is that individualism is best given  empowerment of people’s relationships with one another. The effect of a monopolistic relationship with the State, or as more the case outsourced private providers, is that such relationships do not gain power.

    Coincidentally, it happens that one of the biggest criticisms of ‘dementia friendly communities’ is that it is in some way or other a ‘cover for cuts’. The problem was that, temporally, the Big Society surfaced at approximately the same time as the austerity-led agenda following the global financial crash.

    Whilst latterly there has been talk of care homes forming ‘community hubs’ as part of dementia friendly communities, it appears likely that a central thrust of dementia friendly communities, policy-wise, was to promote ‘independent living’. This ‘independent living’ rose to prominence from the disability movement.

    With the Prime Minister Dementia Challenge, there has been muttering on the spotlight received by dementia (even given the devastating cuts in social care), compared to disability (including the demise of the Independent Living Fund).

    Dementia is not a natural part of aging: that is why it has become important to separate the WHO ‘age friendly cities’ policy stream from dementia friendly communities, even though they show many commonalities (and to separate ‘independent living’ from ‘successful aging’).

    But it is nonetheless clear that there is some sort of relationship between the ‘health of the nation’ and resources the State has to play with.

    I am physically disabled, which is why I particularly appreciated the in-city tram service within the city of Manchester, which made it very easy for me to move around the city of Manchester.

    For the wellbeing of people living with dementia, there has been a growing realisation that integrated services go substantially more than merely health and social care (important though they are); they necessarily involve, for example, housing and transport. It is symbolic than the policy streams of ‘social determinants of health’ and ‘friendly cities’ or ‘friendly communities’ have maintained their silos both at national and international level.

    But, with growing realisation of international instruments such as the United Nations Convention on the Rights of People with Disabilities, rights-based advocacy is reaching another level. The use of the word ‘community’, especially given the devolved nature of politics recently, puts in sharp focus at what level ‘friendliness’ (however so defined) operates.

    Glenn Rees, current Chair of Alzheimer’s Disease International, has often commented on the ‘dementia friendly societies’ policy stream of Alzheimer’s Australia and the contribution of Ita Buttrose. Manchester throws up the question of ‘why stop at community?’ It might be that it is actually necessary to devolve national functions to a local level if only to empower individuals and us collectively.

    First published on Living better with dementia

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