Tag Archives: Dementia

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My recent experience of acute hospital care for a person with dementia. It’s all in the implementation.

 

My mum’s emergency acute admission to a local busy NHS teaching hospital here in North London was in many ways ‘the best of times and the worst of times’.

 

There was a lot to be cheerful about. Many of the registered state nurses and health care assistants were teaching each other in front of my eyes about dementia care, in a way I had not expected. You see, my mother has been recently diagnosed with mixed Alzheimer’s and vascular dementias, and, as her only son who lives with her, we have both found the actual experience rather tough going at many times.

 

Nobody gives you a manual on how ‘to care’. You always feel you are not doing a good enough job, even if you are actually working at full throttle. You don’t often perceive of yourself as a carer, essentially doing a full time job, as you fell insidiously into the role.

 

I am on the GMC medical register, with a license to practise, so it was hurtful to see a Consultant essentially examining my mother in the Acute Treatment Area treating her like a slab of meat. My mother was clearly uncomfortable lying flat on the trolley, and, when I asked why the Doctor had not introduced herself, she said her name and that she was a Consultant.

 

I also found it hurtful that many healthcare professionals seem to judge me personally on my ataxic gait, dressed casually, jumping to conclusions over my perceivied lack of intelligence. One health care assistant aggressively accused of me being ‘drunk’, when in fact I have not had an alcoholic drink for over ten years being in recovery.

 

When my mum was on the acute medical assessment, it was the pits. There was a constant stream of different people, never introducing themselves (despite the #hellomynameis campaign), mum being taken to investigations without any warning, mum being expected to give information when all she could reply was, ‘ask my son’.

 

When I dared to explain I was entitled to visit my mother outside traditional visiting hours, another nurse pointed to a poster on the wall describing ‘John’s Campaign’. There’s no doubt for me that the campaign has been a roaring success with the ostensible backing of the great and the good, including the media, but it was disappointing to see a few nurses pointing at posters to demonstrate to me their actual understanding of the need for the campaign.

 

The dementia-friendy ward where my mum was transferred to was brilliant. The signage was excellent, though I did notice that the ‘dementia friendly clock’ was showing the wrong day one day which even I found disorientating. One HCA taught a nurse to give a massage rather than bleep the oncall for an anxiolytic.

 

And indeed the ward were very prompt at getting my mum sitting upright in her chair, with an inflating cushion, instead of lying all day in bed. The senior nurses had a very good understanding too of the spirit of #endpjparalysis, which I was very happy to see, and even provided a clear discussion of the potential problems in the campaign’s implementation.

 

But for all the incredible work of the staff on that hospital, system failures continue to undermine the patient and carer experience. I felt the social worker was the most impressive professional I have personally met in my lifetime, and indeed Wayne from transport was an incredibly nice guy.

 

We did end up waiting for transport for five hours and in the end mum and I left in fact at 11.30 pm after my mum had become quite agitated. But this is nothing to do with the hospital, but all to do with wider politics nationally.

 

@dr_shibley

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One day, there will be no paid carers for people living with dementia. Crisis, what crisis?

 

To a response of massive incredulity, the current Chancellor of the Exchequer, Philip Hammond, pre-briefed Andrew Marr at the weekend about the new heat of technology about to take over.

 

Mr Hammond tried to make a point about new technology and employment by correctly pointing to the lack of unemployed shorthand typists despite their skills becoming obsolete.

 

When a cure for dementia emerges in 2025, that’s only eight years away folks, we will no doubt wonder what will happen to the employment prospects of paid ‘dementia carers’.

 

In the rush to cutting costs and automisation, it’s conceivable that dementia robots, such as Paro Seal, will replace the equivalent of the shorthand typists – ‘doing more for less’, and achieving ‘better value’.

 

Finding a cure for dementia has always had the whiff of the search for magical snake oil. The last few years have witnessed, in addition to an acceleration in the number of failed phase III therapeutic orphan drugs for dementia, an increasing diversity of acrobatic attempts at finding a breakthrough.

 

For example: none of our attempts so far have worked, even with rampant evangelical attempts at ‘joining dementia research’, so a megabucks grant goes in, with the usual peers marking each other’s homework, on the combination of spurious variables which might predict even vaguely an increased risk of dementia.

 

The brilliant academic Adelina Comas-Herrera (@AdelinaCoHe)  herself tweeted what seemed an innocuous question the other day about what was known, or had been reported on, the relative resource allocations of cure and care.

 

This is of course is a question which nobody really wants to answer. It is clear that it would be nice not to argue about it, in that we should fund both. But this answer is a total cop-out, given the unavoidable ‘zero sum gain’.

 

As a comparison, the £38 billion going to pay the European Union is not going to be spent on the day-to-day running of social care, which everyone agrees is on its knees despite the valiant efforts of social workers daily.

 

And it seems that each penny of the £38 billion is well spent, and pretty easy to “sign off”, for some future ‘jam tomorrow’ whatever the travails of today. The future is apparently bright.

 

And if at all goes wrong, all the current ‘leaders’, particularly in the third sector or regulators, will be nowhere to seen, in much the same way that the ‘divorce bill’ is nothing to do with Nigel Farage.

 

It would be nice to think that Britain can get the best possible clean exit from the European Union. But no amount of lies will get round the hard facts from experts.

 

Even if we find a cure which covers all >100 dementias by 2025, we don’t know what the role of cognitive therapies through person-centred care will be in maintaining good brain health. This is analogous to refusing to acknowledge a need for a relationship with countries with the European Union after we ‘take back control’.

 

According to Dominic Grieve MP, Brexit was sold as an “all singing and dancing project, and nothing could be further from the truth.” And this is of course the story of a cure for dementia to a tee.

 

Crisis. What crisis?

 

 

@dr_shibley

 

 

 

 

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Were ‘dementia friendly communities’ the correct approach after all?

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Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@dr_shibley

 

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Dementia means dementia – especially for the dementia industry

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The phrase “Brexit means Brexit” epitomises a political farce of the highest magnitude, as no-one, not least Jean-Claude Juncker, knows what Britain ‘leaving’ the European Union will look like.

 

Brexit could mean leaving the single market altogether, halting involvement with the Customs Union, or even withdrawing from the jurisdiction of the European Court of Justice. No-one knows yet.

 

An equally fatuous assumption in the Prime Minister’s Dementia Challenge, where the Prime Minister in question was David Cameron, was that ‘dementia means dementia’.

 

In a world where the CEO of a dementia charity would now become the most influential person in dementia, not a hardworking FY2 grade working in an overloaded memory clinic in a large teaching hospital, dementia was reborne as a lucrative brand and industry.

 

The boon to PR agencies and marketing gurus was not felt by the managed decline of social care and social work, to all extent airbrushed from all policy documents on dementia from the current administration of the UK.

 

The systematised demise of health and social care systems, where experts were valued not rubbished, ran in parallel with the assumption that ‘there is no magic tree’. But as Noami Klein of ‘shock doctrine’ fame correctly pointed out on the Andrew Marr Show this morning, this myth was well and truly busted with the multi-billion pound recapitalisation of the banks after the global financial crash.

 

Whatever the ‘divorce bill’ for the European Union, we’ll pay it. But – to pay the workforce properly to optimise care and to prevent burnout, hmmm… “Cost neutral” dementia friendly communities, with dementia-friendly mail-order catalogues and obliteration of the supply of social housing, could easily pick up the pieces.

 

The pathway of top directors in dementia charities and social enterprises earning lucrative salaries in the dementia industry is deliverable only if some volunteers with dementia act as ambassadors with their travel expenses. There’s no money left for social work or social care, or for nurses, in Lewisham, but there is miraculously money for research and development in a California-based Pharma start-up.

 

It would then become all too uncommon for specialists in dementia to get routinely omitted from discussions or conferences on dementia, with engagement officers and ambassadors ‘too busy’ networking or promoting their charities and social enterprises to talk to clinicians or practitioners working daily in dementia care.

 

Like there are a hundred and one permutations to leave the European Union, there are over a hundred different causes of dementia. The idea that GPs could simply ask ‘have you had memory problems?’ to diagnose dementia was sadly a bit of fake news which took hold after the Prime Minister’s Dementia Challenge.

 

Every clinician with competence in dementia knew that the visual hallucinations in Lewy body dementia or the profound behavioural changes in frontal dementia would not easily get caught by this particular working definition of dementia, however good the marketing of young onset dementia charities.

 

“Virtue signalling” from dementia charity never has had it so good: loosely defined as “many people say or write things to indicate that they are virtuous”. So, intergenerational dementia might mean sitting together in a heavily branded “dementia friendly church” or teaching 3 year olds how to diagnose dementia in primary school (when senior clinicians have been inexplicably failing for decades), not asking very high-income youngsters to pay their taxes.

 

Of course, given the actual complexity of dementia, it is indeed impossible to talk convincingly of a single cure for dementia, even if the refashioning of existant drugs such as trazodone might be hyped up as the brand new cure somewhat beyond reasonable expectation.

 

But it is this promise of the bright future for dementia, for a ‘world without dementia’ or ‘ending dementia’ as espoused by large charities, which is the promised land. Meanwhile, one is encouraged to right to be resentful to pump money into promoting health and social care, in much the same way you should get rightfully get angry at paying your subsidies to the European Union.

 

Bring on the ‘twiddlemuffs’ and the audio playlists to improve the wellbeing of everyone with dementia. As far as I feel, the cure for dementia was a lie so large it should have been put on the side of a bus, but this is a world where anything goes, including reinforcing tower blocks with combustible cladding to give people council tax rebates.

 

@dr_shibley

 

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I will co-author my 3rd book on dementia with Prof Rob Howard

Essentials of dementia
Shibley Rahman and Rob Howard
Jessica Kingsley Publishers 2018

There are about 900,000 people living with dementia in the UK.mThe Royal Colleges of Physicians have estimated that people with dementia can sometimes end up comprising even 25% of the acute medical take.

This short, inexpensive book, to be published early 2018 by Jessica Kingsley Publishers, will be a lively and informative quick reference guide for contemporary students and teachers of dementia covering all the essentials about dementia in a clear, jargon-free, sensible way as they negotiate their busy working life, as well as a concise guide to effectivestudy skills.

The recently published Dementia Core Skills Education and Training Framework is an extraordinarily usefulresource which  details the essential skills and knowledge necessary across the health and social care spectrum. Education, training and skills acquisition are all agreed to be a  hallmark of good dementia care.

This document should act as a landmark resource for anyone who is concerned, directly or indirectly, with educational aspects of dementia care. It should inform curricula, provision of educational courses and the development of projects in dementia

This original new title, my third book with Jessica Kingsley Publishers (but my fourth book overall), will be invaluable for anyone with an active interest in or responsible for courses in core skills and knowledge about dementia, for the purposes of further study or research, to access excellent guidance at his or her fingertips.

The book will consider why dementia awareness is important and why a timely diagnosis is so important, how principles in person-centred care are pervasive in all areas of dementia care such as communication or end of life, the importance of family carers, equality, diversity and inclusion in dementia care, and contemporary approaches in law, ethics and safeguarding.

With the workforce in mind, in particular social workers with an interest in mental health, nursing specialists in dementia, physicians and psychiatrists in training, as well as general practitioners, this book will be an up-to-date evidence-based review of the current field. The book will also help practitioners and professionals who wish to develop their skills in research and evidence-based practice, as well as leadership in transforming dementia care.

The text makes reference to best practice including current NICE guidelines and BPS advice on psychological therapy, and will consider also the current-state-of-play in the range of pharmacological interventions in particular cognitive enhancers and antipsychotics and potential for the development of new drugs.

This “all you need to know” new text will also provide practical support for anyone living with or caring for dementia, reflecting best practice in person-centred care promoting the person at the centre of living and care.

I’ve decided to invite Karen Dening, Head of Research and Publications at Dementia UK and member of INTERDEM, to write the foreword – and I am glad to say Karen has accepted.

The book will be co-authored by Prof Rob Howard. After undergraduate study at Cambridge and St Bartholomew’s Hospital in London, Rob joined the Maudsley Hospital in 1988 and became Professor of Old Age Psychiatry and Psychopathology at King’s College London in 2002. In 2015, he moved to the Division of Psychiatry at University College London, where is currently Professor of Old Age Psychiatry.

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My personal view on the #DementiaTax

I am an academic physician in dementia, and this is a personal view.

Although I have voted Labour all of my adult life, I feel that the #DementiaTax cannot possibly be justified from any reasonable perspective of English dementia policy as it currently stands.

It is also highly objectionable under the international framework provided by the United Nations Convention on the Rights for Persons with Disabilities.

It is not a ‘party political point’ for me to criticise this policy which has colloquially become known as ‘the Dementia Tax’. I feel that it is my responsibility, conversely, to do so.

The origins of the term are uncertain, but it is possible that the term was first used by a caller to the “James O’Brien Show” on LBC. The term has been subsequently popularised in common parlance, and even on the front page of the Financial Times.

The ‘Dementia Tax’ is in effect a home equity release scheme. It is proposed that as a source of capital for some people facing large social care costs, you can be given a debt for which the equity on a property is a security. It would be up to you to repay that debt. It is proposed that the debt could even be paid back after you die. The scheme is extended to both domicilary and residential care.

It is not unreasonable to be concerned about people with dementia being in this situation. The costs of care, whether at home or in residential settings (for example, a nursing home or a care home), can be large, far in excess of an average income.

Over successive governments, of differing shades, the social care market has suffered from failure. It is impossible to discount market failure from failed private markets in policy.

There are about 900,000 people living with dementia in the UK. It is worth noting that many do live at home. It is worth noting that many are older and female. This scope for inequality and discrimination makes the operation of private markets in dementia especially perilous.

There is a large number of people who have substantial care needs. It is the current aspiration of policy to be able to enable people to live independent lives. National initiatives such as dementia friendly communities are confirmed by WHO and UN global policy of sustainable development goals.

A right to health is a fundamental human right in international law. The proposal from the Conservative government is potentially inequitable on putting unacceptable pressure on certain individuals who are unable to pay. It is, furthermore, a huge concern that carers will feel under pressure to offer the family home as a security in this home equity release scheme.

We already known that the care system for dementia only functions at all because of the monumental efforts of unpaid, family carers. These essential parts of the care system are pivotal in offering emotional and financial support. They are themselves highly vulnerable of becoming burnt out unless they themselves are looked after.

Caring is an intensely rewarding vocation for many carers, both paid and unpaid, spousal or children, or not. But the State, not the free market, arguably has responsibility in safeguarding  them – this means protecting vulnerable adults.

This home equity proposal is possibly the most unfair way of arranging certain people pay for their care. It is worth remembering that it is very uncommon for someone to know in early adulthood that he or she will develop dementia later on. Also, we do need a solution to problems in dementia care fast, and also social care in general, and this home equity proposal turns the clock many years pre Dilnot and Barker (although their solutions were not perfect, but considerably better.)

Whilst recent policy has emphasised prevention and risk reduction in dementia, in keeping with the emphasis put by HMOs in the US in recent history similarly, it is worth noting definitive prevention of dementia does not exist. For example, lack of education while being a risk factor for dementia did not prevent two previous British Prime Ministers both who were highly educated developing dementia in later life.

The home equity release proposal is further dangerous in English dementia policy, for the mission creep it could provide for private insurance provision in dementia. Whilst a social insurance arrangement with the State would be very different, where we could all pool risk equitably and fairly, private insurance markets suffer in future from well-known issues such as “adverse selection” or “loss aversion” which means that they would ultimately fail for dementia, if there were not sufficient anti-discrimination safeguards in law for example for gender or genetics.

It is intuitively unfair for people who have paid off a mortgage for a property over their lives to see it consumed in care costs, rather than bequeathed as a final legacy, unless you fundamentally view that a purpose of dementia is financial punishment.

 

 

Dr Shibley Rahman

Dr Shibley Rahman is an academic physician in dementia based in London. His last book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach” was published to critical acclaim earlier this year, discussing important aspects of the integrated care pathway for dementia.

 

 

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Revisiting the diagnosis of dementia: a response to Howard.

In yesterday’s online Lancet Psychiatry, Prof Rob Howard opined openly whether a group of frequent attenders at international conferences, living with dementia, were representative of that general population of those who had been diagnosed with dementia (Howard, 2017).

I enclose tweeted pictures of the article from the Lancet Psychiatry’s own Twitter thread here.

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One point in Howard’s argument appears to be that the ‘frequent attenders’ run the danger of making other people with dementia feel as if they are not living up to expectations, in say delivering public talks to big audiences. I think it is easy to clear up here an important potential misconception – that these people living with dementia do not hold themselves out to be ‘representatives’ of the 48 million people living with dementia. But that is not to say they do not consider themselves as part of an important social movement with important international legal rights. And many people newly diagnosed with dementia, facing quite massive upheavals in their personal and professional identity, find (rightly) hurtful the accusation of ‘you don’t look as if you have dementia’. To which, the reply has been, often: “Well, please tell me, what does a person with dementia look like?”  It is this sense of otherness, or being different, which is a barrier to full acceptance and inclusion of people with dementia (indeed one of the criticisms of ‘dementia friendly communities’ is that it unwittingly emboldens this sense of otherness). But there is no reason to disbelieve that any of the frequent attenders has been given a diagnosis of dementia in the sense that bystanders do not have access to the detailed findings their respective clinicians have. There has, for example, been a plethora of articles on how nobody should be ‘diagnosed’ at a distance – including Donald Trump (see here).

It is proposed from the literature that dementia – or major neurocognitive disorder – by definition then seems to threaten the identity and selfhood of the individual at risk, leading earlier writers to see dementia as ‘the loss of self’ or ‘loss of the person’ (Higgs and Gilleard, 2016). I would contend that the identity further imposed as a high profile public figure living with a condition further adds to issues of personhood and identity unexplored, which become problematic if at any stage a diagnosis later becomes questioned (for example for lack of response to pharmacological therapeutic agents.) Recent approaches in post-diagnostic support have indeed tried to build up a continuum of the life of a person before a diagnosis of dementia and his or current life; for example, the process of ‘life story’ has been used specifically to enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard (McKeown et al., 2010). It has becoming increasingly recognised that research on the experience of receiving and living with a diagnosis of dementia is sparse, and that people newly diagnosed with dementia arguably need a mechanism of understanding and making sense of the diagnosis to help them deal with issues of loss and to make positive adjustments to their lives through employing specific coping strategies (Lee, Roen and Thornton, 2014).

A regularly exercised statistic by people wishing to raise funds for dementia, outside of the mechanism of general taxation for the NHS or social care, is that dementia is the most feared condition in adulthood (Various news agencies, 2014). For example, in one poll published in 2014, a finding was that just under four per cent said they were frightened about getting a heart condition and less than one per cent were concerned about developing diabetes, according to a survey of 500 adults aged over 50 from across the UK who were asked which condition they feared most; two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer (various news agencies, 2014). The reaction of people receiving a diagnosis of dementia below the age of 65, so-called young onset dementia, is informative. Patients perceive changes in their identity while caregivers perceive changes in the caregiver-patient relationship. Both can experience grief, isolation, and stigma (Spreadbury and Kipps, 2017). Across European Union countries stigma has been found to influence late presentation to services (through the minimisation and concealment of symptoms), delays in recognition and diagnosis after presentation (through the belief that services had little to offer), and service response to dementia (through therapeutic nihilism and pessimism regarding prognosis) (Vernooij-Dassen et al., 2005; Jolley and Benbow, 2000).

In this recent opinion article in the Lancet Psychiatry, Prof Rob Howard, chair of psychiatry at University College, London firmly argues for the importance of listening to the lived experiences of people with dementia (Howard, 2017). But the line which really strikes you from the piece is: “Put bluntly, they are not a bit like the people with dementia that I have diagnosed and treated.” In English policy, the policy and care purpose about an accurate and timely diagnosis of dementia was so that people could finally have a coherent medical explanation for their symptoms, and that through various specialties could be enabled to live with the condition, along with other comorbidities. In this view, an earlier diagnosis is meant to be of benefit to a person newly diagnosed with dementia, so that clinical care planning might be initiated, including both pharmacological and non-pharmacological interventions, as well as financial or legal guidance (for example, Rahman, 2017). In other words, the length of time actually living with dementia ‘well’ from the event of diagnosis is longer. But we do know this can be far from reality. In England, there has been much success in closing the ‘diagnosis gap’ amongst clinical commissioning groups (e.g. Fox et al., 2014). It has been long recognised that people living with dementia would often have to wait for a crisis late on in their condition or might enter a care home before receiving a formal diagnosis of dementia, and recent policy initiatives such as the Prime Minister’s Dementia Challenge 2020 have tried to remedy this (Department of Health, 2015).

Whatever the ‘rights’ and ‘wrongs’ of people with dementia being used as ambassadors for charity in dementia, akin to brand ambassadors in marketing utilised by big corporates, the intention is undoubtedly well meaning. An international stakeholder group, Dementia Alliance International, is a collective of people living with dementia setting their own agenda for quality of life of people beyond a diagnosis of dementia (https://www.dementiaallianceinternational.org). The medical profession has tended to see people with dementia in the latter ‘stages’ of dementia (although the linearity of staging of the hundreds of dementias including the dementia of Alzheimer type is hotly disputed), so there is an issue with whether advocates living with dementia are ‘like’ people normally seen in clinic. People normally admitted to secondary care are ill compared to people living with a chronic long term condition in the community with health assets optimised and illness at bay. So it might genuinely be that the medical profession is genuinely unused to the idea of people living ‘well’ with dementia (the high bar that ‘living well’ is for all of us). These issues rarely get aired in public, but now is probably the time the discussion takes place constructively and openly.

Howard states explicitly: “I have no reason to doubt that these people sincerely believe that they have dementia and I hope in turn that they will not see this piece as an attack upon them.” Encouraging people to be fully integrated in the community to inspire others to identify themselves about being able to live with dementia in a contented way is, of course, precisely the aim of English policy in the ‘dementia friendly communities’. Howard is definitely not arguing that high-profile activists with dementia are ‘living a lie’, although phenomena such as the “imposter syndrome” exist. Cohen (2015) writes of the “imposter syndrome: “the fear of being exposed, that you don’t deserve your success, aren’t as good as others – and could be “found out” at any moment.” English policy, indeed international policy, in dementia combines an odd split personality where charities in dementia try on the whole to campaign solely on the dementia identity and yet try to convey that the identity of a person is more than his or her label of dementia (hence people raising placards in photoshoots: “putting the ME back in deMEntia”). The issue that activists in dementia at international conferences is that their identity ’as having dementia’ becomes emboldened such that, once public about their diagnostic label, it would be hard for them to become ‘undiagnosed’ without the potential for loss of face.

But I do think likewise that professionals charged with making a diagnosis of dementia should not be intimidated into not reviewing their diagnoses, when so much hinges on the diagnosis. We can all agree that the disclosure of the diagnosis of dementia is indeed a life-changing event. But a diagnosis of any medical condition has to be reviewed as further information comes to light either supporting or not supporting an original diagnosis. Symptoms vary according to how advanced the biology of a condition might be. To review a diagnosis of dementia is not to suggest that a recipient of a diagnosis of dementia is a fraud, or has deliberately misled a clinician, in the same way that a change of diagnosis should not immediately lead to accusations of blame or that someone somewhere has “made a mistake” necessarily. We know that some diagnoses of dementia, especially ones of people in younger age groups, fall within a very grey area where there is considerable uncertainty, where certain investigations can indeed appear normal such as the behavioural variant of frontotemporal dementia or levy Body dementia.

Howard’s well written piece I think is important for two further reasons, if one assumes that activists with dementia appearing in high profile are doing us all a great service. Firstly, the need to keep the diagnosis under review is in all of our interests. Accurate diagnosis of most diseases that cause dementia depends on post mortem neuropathological examination, and the mismatch between in vivo and post mortem diagnoses can be stark (Love, 2005). Secondly, the possibility does genuinely remain that these high profile people living with dementia, who seem relatively mobile and articulate, do represent an important subgroup of those people living with dementia. They could represent a group of younger patients who are physically active, benefit from social networking (whether virtually or in ‘engagement’ events), and keep their brains active. All of these are indeed recommendations in promoting ‘brain health’, or slowing the rate of decline of a dementia, as reviewed in the evidence comprising the recent Blackfriars Consensus (e.g. Lincoln et al., 2014). The mere act of packing a suitcase, jumping on a train or plane and giving a presentation might have a genuine therapeutic effect as yet untested through any randomised control trial for post diagnostic support for dementia. It is known that levels of arousal and motivation and affect can be major determinants of cognitive function, for example a boost in cognitive performance in older adults has been found after a bout of exercise (reported by Johnson et al., 2016).

As such, it could be that the original diagnosis of dementia was inaccurate, and would have been fulfilled though the diagnosis of ‘mild cognitive impairment’. Since its inception in 1999 (Petersen et al., 1999), the concept of mild cognitive impairment (MCI) has evolved. The original criteria for MCI focussed on memory impairment, but during recent years, they have been expanded to define subtypes, including non-amnestic (without memory impairment), as well as single and multi-domain impaired forms (Petersen, 2004). Efficient ways of identifying the ‘at risk’ population (conversion from any pre-dementia state to dementia) are required for larger-scale research studies (Ozer et al., 2016). Internationally there is no consensus on the proportion of people with MCI who ‘convert’ to dementia, and indeed it has become the nirvana of the pharm-focused research to identify such susceptible individuals early-on through sophisticated tests such as biomarkers (e.g. Bos et al., 2017). Looking at Howard’s predicament unconstructively, it could be that some of the people he identifies could or should be ‘ambassadors’ for living well with mild cognitive impairment, but the problem exists that there is no Mild Cognitive Impairment Society.  It is perhaps worth noting here that my mere mention of this reinforces a cliff-edge phenomenon between ‘mild cognitive impairment’, where being a mild cognitive impairment is unlikely to lead to as many doors for discussing your lived experience. And yet this difference between mild cognitive impairment and dementia is simply an artefact of how senior clinicians have desired to draw up the arbitrary criteria for cognitive disorders at any one time. Looking at Howard’s observation helpfully, it could be that this group of people shines light on a possible therapeutic window when a psychosocial intervention could most benefit people facing the potential prospect of a future diagnosis of dementia. But it is still indeed the case that people who are expected to be living with dementia will find their diagnoses being questioned quite offensive.

Clinicians should not in the business of undermining people, and I feel Howard’s piece is a long way from that. On the contrary, Howard, as a senior specialist in dementia, holds an important and valid view which merits scrutiny and questioning about assumptions about living with dementia, professional, personal or otherwise. There will have been many people to have benefited from a prompt timely diagnosis of dementia, but there will be some, unfortunately, who will have received harm from receiving the wrong diagnosis (harm for being treated for the wrong illness and not being treated for the right illness). We do not collect in England how many people received a wrong diagnosis of dementia, from having made intense efforts to improve the diagnosis rate, though there is now acknowledgement that this was a policy drive which may have gone too far. Like dementia itself, the various arguments are incredibly complex.

 

 

References

Bos I, Vos SJ, Frölich L, Kornhuber J, Wiltfang J, Maier W, Peters O, Rüther E, Engelborghs S, Niemantsverdriet E, De Roeck EE, Tsolaki M, Freund-Levi Y, Johannsen P, Vandenberghe R, Lleó A, Alcolea D, Frisoni GB, Galluzzi S, Nobili F, Morbelli S, Drzezga A, Didic M, van Berckel BN, Salmon E, Bastin C, Dauby S, Santana I, Baldeiras I, de Mendonça A, Silva D, Wallin A, Nordlund A, Coloma PM, Wientzek A, Alexander M, Novak GP, Gordon MF; Alzheimer’s Disease Neuroimaging Initiative, Wallin ÅK, Hampel H, Soininen H, Herukka SK, Scheltens P, Verhey FR, Visser PJ. The frequency and influence of dementia risk factors in prodromal Alzheimer’s disease. Neurobiol Aging. 2017 Apr 8;56:33-40. doi: 10.1016/j.neurobiolaging.2017.03.034. [Epub ahead of print]

Cohen, C. (2015) Imposter syndrome: Why do so many women feel like frauds? The Telegraph 16 November 2015 http://www.telegraph.co.uk/women/work/imposter-syndrome-why-do-so-many-women-feel-like-frauds/

Department of Health (2015) Policy paper. Prime Minister’s challenge on dementia 2020https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020

Fox M, Fox C, Cruickshank W, Penhale B, Poland F, Steel N. Understanding the dementia diagnosis gap in Norfolk and Suffolk: a survey of general practitioners. Qual Prim Care. 2014;22(2):101-7.

Higgs P, Gilleard C. Interrogating personhood and dementia. Aging Ment Health. 2016 Aug;20(8):773-80. doi: 10.1080/13607863.2015.1118012. Epub 2015 Dec 28.

Howard, R. Doubts about dementia diagnoses. Lancet Psychiatry, available online 9 May 2017, https://doi.org/10.1016/S2215-0366(17)30150-5.

Johnson L, Addamo PK, Selva Raj I, Borkoles E, Wyckelsma V, Cyarto E, Polman RC. An Acute Bout of Exercise Improves the Cognitive Performance of Older Adults. J Aging Phys Act. 2016 Oct;24(4):591-598. Epub 2016 Aug 24.

Jolley DJ, Benbow SM. Stigma and Alzheimer’s disease: causes, consequences and a constructive approach. Int J Clin Pract. 2000 Mar;54(2):117-9.

Lee SM, Roen K, Thornton A. The psychological impact of a diagnosis of Alzheimer’s disease. Dementia (London). 2014 May;13(3):289-305. doi: 10.1177/1471301213497080. Epub 2013 Aug 5.

Lincoln P, Fenton K, Alessi C, Prince M, Brayne C, Wortmann M, Patel K, Deanfield J, Mwatsama M. The Blackfriars Consensus on brain health and dementia. Lancet. 2014 May 24;383(9931):1805-6. doi: 10.1016/S0140-6736(14)60758-3. Epub 2014 May 19.

Love S. Neuropathological investigation of dementia: a guide for neurologists. J Neurol Neurosurg Psychiatry. 2005 Dec;76 Suppl 5:v8-14.

McKeown J, Clarke A, Ingleton C, Ryan T, Repper J. The use of life story work with people with dementia to enhance person-centred care. Int J Older People Nurs. 2010 Jun;5(2):148-58. doi: 10.1111/j.1748-3743.2010.00219.x.

Ozer S, Young J, Champ C, Burke M. A systematic review of the diagnostic test accuracy of brief cognitive tests to detect amnestic mild cognitive impairment. Int J Geriatr Psychiatry. 2016 Nov;31(11):1139-1150. doi: 10.1002/gps.4444. Epub 2016 Feb 18.

Petersen RC. 2004. Mild cognitive impairment as a diagnostic entity. J Intern Med 256: 183–94.

Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangalos EG, Kokmen E. Mild cognitive impairment: Clinical characterization and outcome. Archives of Neurology. 1999;56(3):303–308.

Price, C. Revealed: the dementia diagnosis drive that went too far 26 February 2016 http://www.pulsetoday.co.uk/clinical/more-clinical-areas/neurology/revealed-the-dementia-diagnosis-drive-that-went-too-far/20031247.article

Rahman, S. (2017) Enhancing health and wellbeing in dementia: a person-centred integrated care approach, London: Jessica Kingsley Publishers.

Various news agencies (2014). Older people are more scared of dementia than cancer, poll finds. http://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html

Vernooij-Dassen MJ, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V, Iliffe S. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. Int J Geriatr Psychiatry. 2005 Apr;20(4):377-86.

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Human rights in dementia. The only way is Kyoto.

It wasn’t that long ago that many people, after receiving a diagnosis of dementia, would be propelled head-first into an abyss of the health and social care systems, with no supportive ‘dementia friendly communities’.

As leading international campaigner Kate Swaffer provided in a talk in 2016, people beyond a diagnosis of dementia “are not provided with rehabilitation or other enabling post diagnostic support” and “are not provided with the same disAbility support as every other person with a disability”. It is widely recognised that people living with dementia are frequently denied their human rights both in the community and in care homes.

What I feel is the power in dementia is not as such the nebular notion of dementia, but that individuals with distinct lives of their own have rights. As Chris Roberts, also living beyond dementia, said this morning in Kyoto, “People with dementia have their rights trampled on – these are not just rights relating to their disability, but also their human rights”.

The back story is as follows.

The WHO International Classification of Functioning, Disability and Health (ICF) defined disability as ‘an umbrella term for impairments, activity limitations and participation restrictions’ (WHO, 2002, p. 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors (environmental and personal factors).

According to Article 1 of the UN Convention on Rights of Persons with Disabilities (UNCRPD):

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

In UK law, the Equality Act [2010] states that a person (P) has a disability if:
 (a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

The term ‘disability’ is therefore not meant merely stigmatising label to be imposed upon individuals. Nor is the term ‘disability’ in this context intended to focus on what a person can’t do, but rather the wider societal context in which a person with a disability lives their life and what they can do. This is significant as the act of the diagnosis of dementia not in itself be profoundly disempowering.

National laws and policies (e.g. mental capacity legislation, health and social care services, dementia-friendly communities, etc.) must be compliant with human rights legislation – disability rights are therefore potentially powerful levers for change.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Their mission particularly includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. This unique group advocates for a more ethical pathway of support that includes their fundamental  human right to full rehabilitation and full inclusion in civil society; “nothing about us, without all of us.”

I’ve found their pamphlet ‘The Human Rights of People Living with Dementia – from Rhetoric to Reality’ very helpful.

There’s been a huge amount of work about why the label of dementia can bring with it negative stereotypes and pre-conceptions. The literature since the seminal work of Becker in the early 1960s is now substantial into the field of “stigma”Stigma can be a contributing factor for why people with dementia do not claim their rights.

Owen Miller wrote originally as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, the following.

“But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.”

Kate Swaffer, Chair and CEO of DAI, was the first to use the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her.

Many people with dementia report a common experience of loneliness and social isolation which they experience when friends and family members stop visiting, Older people are more fearful of developing dementia than they are of cancer, a poll recently suggested. Two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer.

The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisationshave the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations. All of the articles are significant, but it is especially noteworthy that a right to legal capacity on an equal basis was enumerated in the CRPD in Article 12 as a subsidiary to the right to equal recognition before the law.

An accessible Users Guide to the Convention is here.

In March 2015, Kate Swaffer made three demands at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the CRPD
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

It was further reported that, at the Alzheimer’s Disease International conference’s international conference in April 2016, the leaders of 38 national Alzheimer Associations committed to a human rights based policy and full access to CRPD.

Prof Peter Mittler CBE in August 2016 noted:

“But people living with dementia are at great risk of being left behind in the sustainable development groups because there is a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than the inter-sectoral responsibility of all Ministries, including Housing, Transport, Social Care and Protection. These would enable us to have access to the whole range of supports, services and amenities available to persons with disabilities recommended in CRPD.”

The human rights based approach (HRBA) is important.

HRBA is based on participation of people with lived experience, as with the disability rights movement’s motto ‘nothing about us without us’. Yet there is a shocking lack of consultation with people with dementia throughout much of dementia care. It was recently found the quality of dementia care in OECD countries is very poor.

Rights pop in various contexts.

For example:

  1. In many countries people living with dementia are often physically and chemically restrained, even when regulations are in place to uphold their rights. Furthermore, people living with dementia can also be victims of neglect and abuse.
  2. More recently the broader concept of advance care planning (ACP), a multi-stage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care, has been introduced. Evidence shows that one to one discussions with a trained professional over a period of time are the most successful. ACP may thus provide an opportunity for more person-centred care, although such discussions should occur while the person still has capacity.
  3. Sexual self-determination is considered a fundamental human right by most of us living in Western societies. Conduct follows strict rules relating to consent and coercion, but for older people with dementia living in residential aged care facilities, however, the issue becomes more complex. But it is hard to deny a wish for people to form loving relationships, and this is bound to happen too in the context of residential care. We are at danger of treating all relationships which occur in residential care with suspicion until proven otherwise. This arguably offends inalienable, universal human rights and a right to democratic citizenship.
  4. Article 8 of the European Convention on Human Rights concerns the right to family and private life. This includes the right to respect for an individual’s home and correspondence. The right contained in Article 8 is known as a qualified right which means that there may be circumstances in which some interference with it is justifiable. This right means that an individual has the right to the level of personal privacy which is compatible with a democratic society, taking into account the equivalent rights and freedoms of others. Any interference with this right by a public authority, such as CCTV video surveillance, may be subject to a test of acceptability. This might also clash with the so-called “deprivation of liberty safeguards”, where somebody with dementia might have his liberty taken away by the State.

There’s no doubt that human rights are a big deal, and I have no doubt that the WHO/UN Sustainable development groups/human rights approach will become enshrined within the new vocabulary of dementia friendly societies or age friendly cities in time.

@dr_shibley

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What would happen if there were no medical treatment options for dementia?

Currently, what will get physicians or psychiatrists grabbing for the prescription pad in dementia for a person living with dementia might be a need to prescribe a drug to produce a modest improvement in thinking, or a sub-domain of thinking such as memory. There’s been a drive, particularly since the famous report by Prof Sube Banerjee in 2009, to reduce the volume of inappropriate antipsychotic prescriptions. These antipsychotics were sometimes given inappropriately as a disproportionate chemical form of restraint, thus offending human rights, where other options might have been more suitable (for example finding out that a person with dementia had a treatable source of pain which could be treated appropriately.)

Whilst there’s a lot of hype to do with ‘change’, some of it unhelpful, some of the work in change is very helpful. I came across, via tweet from Helen Bevan, a very interesting activity called “BANNED“, from the Patient Safety and Quality Control Council.

I’d be very interested to hear of responses to this activity for the specific scenario where a clinical practitioner is unable to recommend or prescribe ANY medication for dementia. In the case of cognitive enhancers, these can have modest effect anyway (though it is worth noting for some the effect is significant and substantial).

I have therefore reproduced the activity instruction sheet accordingly.

“Sometimes turning your thinking on its head can be the best thing to do when trying to generate new ideas and solutions to old problems. The banned exercise gets you to create future scenarios based on imagining a world in which a product, service or experience no longer exists. It explores how people might adapt in this situation to generate new ideas and creative solutions.

You’ll need

  • 30 minutes
  • Groups of 6-8
  • Flipchart paper for storyboards
  • Marker pens

What to do

Decide on a scenario to investigate. For example, a world in which there is no medical treatment for dementia, for example there are no cholinesterase inhibitors or antipsychotics.
Determine time and scope for the scenario. For example, we begin when the person with dementia and care partner enter the room, with the person with dementia having been newly diagnosed with dementia.
Identify stakeholders. For example, patients, nurses, physiotherapists, occupational therapists, care aids, physicians, etc.
Create a storyboard by drawing your scenario. How would you adapt in your new world in which there were no medical treatment options for dementia? You might recommend memory aids or smartphone apps. Try to generate as many adaptations as possible.
Analyse the scenario through discussion. Explore your adaptations and how they might be put into practice.
Summarise insights. Discuss your adaptations and people’s reactions to them. Are any possible to test or implement?

Debrief

  • What did it feel like to imagine a world where medical treatment option no longer existed?
  • Were you surprised by the ideas that you were able to generate?
  • How could you apply this learning/experience in your work?”

 

@dr_shibley

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Is there enough competition in the “dementia conference industry”?

It’s exactly the same list of CBE speakers who are now on the programme of the latest dementia industry conference as the previous programmes in 2012, 2013, 2014, 2015 and 2016 (except a few years when these people were merely CEOs they were not CBEs then).

This perhaps raises an interesting question is: that is, does the consumer have enough choice between dementia charities and regulators in England?

One can predict the need for the regulator to update their regulation techniques, so that care homes which were rated ‘outstanding’ one day do not appear as the next Winterbourne the following day. (The overzealous reliance on regulation, rather than performance management, was also seen in heady days of the global financial crash where Lehman Brothers were given the top financial status one day but declared bankrupt the following day.)

For all the talk of “challenger banks” in the banking industry, the fact is new smaller banks are rarely successful in entering an industry dominated by a few giants. The result? That your bank will charge you the earth for unauthorised overdraft transactions when your bank attempts a transaction with no funds. This is merely the same as your inbox trying to accept a new email when you have reached your inbox limit.

When businesses have insufficient competition, they are prone to unconscionable practices. The way to get round these barriers to competition is to maximise harmonisation and interoperability – that’s why uniform methods of payment and initiation and account management electronically between banking providers can be actively promoted due to the new EU Payment Services Directive (PSD II). It is now my contention that we similarly have a dementia industry out of control, with some of the key players too big to fail whatever they do.

We see exactly the same unhealthy private market in conference organisers. It is rare for new speakers to break into the speaker circuit, despite there being a wealth of expertise in a range of different backgrounds. For example, you’re much more likely to hear of the latest failed big budget project from a large charity than an organic project with barely any funds from a stakeholder group of people with dementia. This is much to the detriment of moving things genuinely foreword in dementia care and practice.

This is not in the interest of anyone. When Deloitte did their famous report on thought diversity, it was argued that diversity in thoughts and opinions was exactly what you needed to avoid over-reliance on certain failed ideas from people prone to groupthink. This can mitigate against vulnerability to market shocks, and build up resilience.

By this virtue, there is absolutely no reason for ‘Dementia Friends’ to be run by a single charity amassing millions of new customers seemingly in perpetuity, as a result of multi-million pound marketing through a Government assisted initiative. This homogenisation of provision about dementia information provision results from an overzealous scripting of information sessions which  is intransigent and inflexible, and does not encourage any divergence from groupthink or innovation. It simply encourages intense marketing and branding by one charity which is blatantly uncompetitive, and I am deeply worried about the damaging impact this has on the rest of the dementia “local economies”. The mass-marketed “Dementia Friends” cannot even with the greatest generosity in the world be considered a ‘social movement’ – call what it is, please, thrat it is a highly effective mass marketing exercise akin to selling BigMacs around the world.

In English dementia policy, people like me are trying to encourage people with dementia to focus and work on what they can do, rather than what they cannot do. This is also known as an assets or strengths approach to healthcare, and is fundamentally important as a narrative solely based on deficits and impairments can be profoundly demoralising. Indeed, I made this a blatant theme of my first book, which won best book of the year award for the BMJ Books in 2015 in health and socIal care; this book was called “Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

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But there is a very serious problem as a result of groupthink, lack of competition and, at worse, a sense of collective corporate arrogance – that is, mistakes can easily be made.

Take for example the lack of ‘caring well’ in the NHS England ‘Living well with dementia’ Transformation Network.

dementia-well-pathway

Whoever thought of a policy on dementia which airbrushes and expunges out ‘caring well‘ – e.g. clinical specialist nurses, respite care, domiciliary care, social care – even in the ideological drive for a small state cure-reliant approach, I feel, should be frankly ashamed of themselves. And it’s soul-destroying to see this substandard piece of work being pedalled at expensive conferences.

I spent 9 months out last year unpaid, and researched for myself the current state of play in domestic and international standards in integrated dementia care – and yes, some of it is not what you hear heavily marketed in big conferences, and is available for a mere fraction (up to tenth) of the price! It has received excellent reviews from other experts in the field, for which I am grateful.

I wrote 3 books in 3 years, completely pro bono, this way. It was intensely fulfilling to be able to contribute in my own way.

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I strongly feel that we need international solidarity, away from financial vested interests, for people living with dementia to be genuinely enabled through instruments such as the United Nations Convention on Rights for People with Disabilities, as dementia is legally a disability. People with dementia don’t necessarily ‘need permission’ from others, such as large corporate charities. I feel words such as ’empowerment’ and ‘engagement’ are terms of inappropriate aggrandisement – I know as a carer that all I want is some space, time, and real practical help.

If indeed dementia ‘never travels alone’, why do clinical specialist nurses get such a raw deal in policy in dementia compared to in cancer (e.g. Marie Curie nurses or MacMillan nurses)? The hallmark of dementia is complexity and co-morbidity; it is very unlikely for you to find a person living with dementia living with no other physical or mental health condition. It is thus imperative we have adequate care planning, continuity of care, workforce training and caring for the carers in the English offering for ‘caring well’ – i.e. through Admiral Nurses. And to give her credit, the Chief Admiral Nurse of Dementia UK is superb, Hilda Hayo.

C8HdORHW0AAwJh4

I believe that you can learn a lot about dementia from people with the CBEs or with big cheque books at big conferences, but they are not the only source of useful information.

You do need to hear the other voices, often people living with dementia and care partners not in professional ‘engagement groups’ AND ALSO the voices of grassroots professionals and practitioners who have been dealing with this day in day out for decades but who rarely have time or resources to attend thee conferences, to get practical help.

But I don’t think that with the near monopolistic behaviour of certain players we are getting proper ‘coverage’ in policy of other aspects which can make a real difference to people’s lives.

 

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Big conferences are great fun – but only part of the story.

 

@dr_shibley

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