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I am a person, not a diagnosis: deconstructing Kate Swaffer's poem on dementia

I have always understood “living with dementia” to mean that that person carries on with life, knowing that there is an underlying medical phenomenon somewhere. To me, it’s exactly the same as living in recovery from alcohol dependence. If I were to have another alcoholic drink, I wouldn’t be able to stop drinking. It’s a pathological reaction. I view it in the same way that some people have an allergy to peanuts. I don’t actively think about not drinking all day – it’s just something that’s part of my life.

It did genuinely come as a surprise to me, however, that some individuals view ‘living with dementia’, as living with somebody close to them with a dementia. I respect this viewpoint, and it is clear that no offence is intended there as well.

Kirsty

I don’t know what a person living with dementia (in my sense of the phrase) “feels like”, in the same way philosophically I cannot know what he or she perceives as the colour red. But an attempt to understand what one of the dementias might be like for that person I believe is pivotal for care, consistent with Tom Kitwood’s seminal work on personhood. In this framework, your prime concern is the person (rather than patient) with one of many types of dementia. A person will be a ‘product’ of experiences unique to him or her, and his or her own physical health, and not just a sum of his or her chemical receptors in the brain.

For medical professionals, a diagnosis can operate at a number of levels. One is individual, pertaining to someone’s identity or concept of being ‘sick’. One can be institutional (in relation of that individual to clinicians, politicians or social movements). We have seen this year how some politicians have been clamouring for a slice of the dementia diagnosis action. One can be societal, which depends entirely on how diagnosis frames that particular entity. For example, society might view that a delayed diagnosis for a dementia, where there is no obvious reason for this delay, is simply unacceptable.

There are in theory four possible options. With a diagnosis, a person may find himself or herself with a ‘disease’ or ‘illness’that potentially could be cured or treated, ‘healthy’ or no illness (but subject to future monitoring), ‘at risk’ of developing a future disease, or an illness with no disease (something wrong but not fitting conventional protocols of medicine.)

But as Blaxter warned back in 1978, “The activity known as ‘diagnosis’s is central to the practice of medicine but is studied less than its importance warrants.”

A diagnosis is by no means a trivial issue. It has become powerful because of the close proximity in academic and practitioner circles between legal, insurance and medical jurisdictions.

A diagnosis can have important consequences. Those consequences might be “administrative”, allowing somebody to access resources in health care; it can “legitimise” sickness (or the rather perjorative notion of “deviance”); or can encourage research into the existing evidence base.

A person as a result of a diagnosis may adopt “a sick role”, after Talcott Parsons’ seminal work in 1951. This construct of ‘sanctioned deviance’ is not without its critics,  who argue that this encourages a culture of blaming ‘the sick’.

For the purposes of the medical profession, a diagnosis can be seen as a diagnosis of a cure or treatment. Indeed, for many, the identification of a cure or treatment would contribute to diminishing the stigma associated with, or discrimination to the detriment of, a person with a diagnosis. These days, particularly for dementia perhaps, given arguably the lack of a robust cure or disease-modifying treatments for the most common form of dementia known as Alzheimer’s disease, having a diagnosis might be seen as enabling rather than labelling (after Marian Naidoo.)

Kate Swaffer, who has herself written candidly about her personal experiences of dementia, concludes her recent poem, “If they are not diagnosed with dementia…They cannot be living with it.”

In explanation, Kate Swaffer further writes:

“Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.”

There is indeed more to this than immediately meets the eye. Take autism, for example.

Contrary to popular assumption, people diagnosed with so-called “mild forms of autism” often don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a recent study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according that study.

There’s been a growing realisation that diagnostic criteria are not “gospel“, and a number of medical phenomena have seen a number of patient groups query this; these include myalgic encephalitis, B12 deficiency and Lyme Disease.

In the case of autism, such difficulties might be mitigated against by merging of pervasive developmental disorder into the autism spectrum. And a similar phenomenon is taking place for the reclassification of the dementias as “neurocognitive disorders” (of major and minor types.)

It can’t easily be denied though that some individuals find a diagnosis helpful in that such a diagnosis might help to make sense of the past, present, and future (see for example “midlifeguy”‘s experience here).

Kelly Boylin writes that:

“”Time to change Wales” are doing amazing things and I am proud to say that I wear their end stigma badge everyday and am frequently asked about it. I am so passionate about stamping out stigma and discrimination against mental health that some days it’s literally all I can think about. I guess that’s why I set up my campaign Kim’s Voice, in memory of my late sister who committed suicide in 2009.”

Persons who have been given medical diagnoses have tended to find support from others who share similar experiences and there are instances of specific-issue health movements shaping medical practice and government policy. And it’s inevitably going to be the case that some diagnoses are contested, challenged and/or politicised. Indeed, diagnostic categories can, and often are, resisted or disputed.

Whether you happen to agree with Kate Swaffer, ironically, is personal to you, but it’s hard to deny that that poem throws up some important questions about identity and the way others perceive you.

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What is "Living well with dementia" all about?

My book is, I hope, a timely look at the idea of living well with dementia. There are, to my knowledge, few books which examine this issue which are intended for the general public. I hope the book is interesting and readable. To help, I have written this book in the style in which I blog. It’s been challenging to put together. It’s been very rewarding for me though.

This book is not about the medicine of dementia. There are specialist textbooks for that, including the diagnosis, investigations and management of the various conditions which might present to the clinician as a dementia. There are also plenty of clinicians who specialise in that. I have, however, introduced briefly how people with dementia might be identified in primary care, and the complexities of “the screening debate” which is currently so rampant in policy circles (see for example @DocMartin68). There is also a chapter on maintaining living well with dementia in end-of-life care.

I’ve had – necessarily –  to confront head-on some deeply entrenched misconceptions. There are indeed hundreds of different causes of a dementia, and yet dementia is erroneously considered by many in the media as a single entity. Politicians talk about a single cure. It is incredibly dispiriting to see this debate being led by some people who patently don’t know what they are talking about. Such factual errors can severely hamper the direction of the debate.

Particular types of dementia, however, tend to have particular “features”. For example, spatial navigation can be an issue quite early on early dementia of the Alzheimer type, social awareness can be an issue early on in the frontal dementias, and language can be an issue early on in some of the rarer dementias. As this is a particular research interest of mine, I have though tried to convey a flavour of some of the exciting developments which are taking place here from the world academic community. I feel that, with time, these discoveries will impact on helping people to live well with dementia. Another reason I’ve decided to talk about these findings is that these topics tend to be parked out of sight in specialist cognitive neurology journals which only certain people read. I believe strongly these findings should be widely published too.

Thankfully, there are quality standards published by National Institute for Clinical Excellence for dementia and specifically to support people well with dementia. At a time when ‘Health and Wellbeing Boards’ are supposed to be considering wellbeing in their commissioning decisions,  and at a time when dementia remains an important societal issue (though the exact prevalence of dementia may in fact be falling), I believe that it is imperative that people involved in healthcare have a clear idea what wellbeing is, why wellbeing is important for policy and the person overall, and how perhaps wellbeing might be measured for the dementias.

There is in fact a compelling socio-economic case for thinking about the impact of interventions on people with dementia and those interventions targeted at carers whose needs can often go unacknowledged. But if you’re genuinely interested in thinking the inherent positives of looking after our fellow citizens, the narrative is no longer one of “cost”, but becomes one of “value”.

Above all, my thesis argues for a person-centred care approach. This approach fundamentally values the person as an individual in the context of his friends or family, and considers his perspective and environment where care is organised. In other words, attention is given to the factors contributing towards wellbeing, not the neuropharmacological receptor make-up of a patient on whom a medication might act.

I’ve therefore intentionally tried to shift the entire language of talking about people with dementia away from sheer despair. There are chapters on activities, such as reminiscence storytelling (including life stories), dancing and gardening.

I personally have learnt a huge deal from people with dementia, who are no different from my other closest friends. A huge step in understanding someone’s beliefs, concerns or expectations is made when you put yourself in a person’s shoes, as Gill Phillips (@whoseshoes) has successfully encouraged. Communities of people living with dementia can be happy, as any Wednesday at the Healthy Living Club at Stockwell will amply demonstrate (@HLCLC).

Also it is easy to be lost in the mire of the quest for personalised drugs, but there is a huge amount that can be and should be done to offer practical help for or on behalf of people living with dementia. This includes independent advocacy and effective communication.

The external home, including individual rooms, and the ward environment can be designed optimally with the person living with dementia being of prime importance. A person-centred approach continues to be important for best practice in the design of built environments, but with different areas of emphasis such as inclusivity and “environmental supportiveness”.

One of the undeniable strengths of the #G8dementia summit was an imperative to improve dissemination of high quality information for care in dementia, as it is argued that this can lead to improved choice and control in personalised services. The “Dementia Challengers” website which Lee (@dragonmisery) has designed is no small achievement.

One of the major research challenges in the next decade will be think precisely how best to design assistive technologies based on the actual abilities of people living with dementia. Substantial progress has been made in this direction through a number of high-profile research projects such as INDEPENDENT and ENABLE. Such innovations, and those promoting telecare and ambient assisted living technologies, have indeed come from various diverse stakeholders, including the EU and the UK’s own “Design Council”.

The practical, and ethical, challenge will be how to encourage aims which at first blush might appear inherently contradictory, such as independence and social inclusion through extended networks  (see for example @shirleyayres), and this book touches upon this demanding debate. The success of innovations for dementia care will live or die through their ease of adoption in real life. One of the most pleasurable aspects of writing this book was to learn off various people on Twitter here (such as @helenbevan and @clarkmike). The ethical issues embue the whole argument and I’m grateful for @peterDLROW’s help in this regard.

There is a long and proud history of considering the needs of an individual living with dementia within the context of supportive communities. My book mentions a number of bodies both domestically and internationally, including the Joseph Rowntree Foundation and WHO, which have done excellent work on this.

This book can only provide a snapshot of living with dementia in English policy. I have tried to maintain an optimistic outlook, whilst being entirely realistic about the challenges this policy faces. The book is intended to spark a debate about where we might best target our efforts, but always puts in pole position the person living with dementia, and friends, families or carers. I hope very much people will read this with an open mind, and talk with one another about what they found exciting.

I know a number of people who are powerful advocates for those living with dementia (@NormanMcNamara and @KateSwaffer). They are all remarkable people and give so much of their personal time to raising awareness about the dementias. I also am lucky to know a few people who have lived and breathed looking after somebody close to them with dementia (@BethyB1886 and @tommynTour); one of them (@nursemaiden) has kindly written one of the Forewords. I sincerely hope that they would feel my book does their passion to this cause some justice.

Finally, I have had no “vested interests” in writing my thesis, so I hope you find it unbiased, balanced and accurate. If I have contributed just a small amount to one person living with dementia, I will feel my job will have been fulfilled. It’s just a snapshot of the field as it is now, but I dare say things will change. If you would like to be more involved with this book, there’s a twitter feed (@dementia_2014) and a Facebook page (co-managed by me and @KimSea2Shore).

Many thanks for your time.

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How Gustavo and Ethel have so much to teach people about living with dementia

pasta bake

Gustavo is not his real name. But he is a man who came to the UK in the 1950s to seek work. He had been living in a village in South America, but had managed to fund himself through an accountancy degree. When I asked him why he had done this degree, he explained education for him was the best way to get out of poverty. He also explained how he was determined to help the U.K. with its economy after the Second World War.

I was talking to Gustavo over quite a nice plate of a tune pasta bake. As I quite like cheese and sweetcorn, I loved this nice simple dish. I had a glass of orange squash too. Gustavo had the same.

Gustavo was great company. I would say that wouldn’t I, as he laughed at my poor jokes? When I accidentally dropped my fork on the floor, he kindly picked it up for me.

We were both having lunch at the Healthy Living Club in Stockwell. It was quite a dreary morning in November, but I had decided to spend all Wednesday there. Wednesdays are a day when people living with dementia can come to spend some time in each other’s company.

I was invited to take part in their sedentary ‘exercise sessions’. I couldn’t do the exercise requiring you to catch a ball, as I am physically disabled. Gustavo was though quite good at it. His eyesight is excellent, and he explained that as a young boy he loved playing football.

Doris (not her real name either) was asked by the group leader to make up a gesture and to show it to the rest of the group. I thought Doris’ gesture was some sort of weird salute, but we all copied it anyway, and Doris was delighted.

We then all played charades over lunch. Ethel kept on winning (not her real name either). I don’t know how Ethel did it really, but her long term memory for film titles is clearly amazing.

It was an amazing day, for people with very different backgrounds simply appearing to enjoy each other’s company. That in this day and age is relatively rare in itself, with everybody rushing around in society, appearing to do a lot but in fact doing very little.

Gustavo and Ethel are remarkable also as they are good examples of “Ribot’s law”. Ribot’s Law was first postulated by the French psychologist Théodule Ribot (1839 -1916), who is recognised as one of the pioneer 19th century advocates for cognition. Ribot was particularly interested in case studies which helped to shape theories of psychological function.

Ribot’s Law was hugely influential in theories of memory and learning: the observation that functions acquired most recently are the first to be affected is one which held massive truck for ages, and shaped other academic lines of enquiry. Gustavo can remember clearly what happened in the 1950s, as if it were yesterday. Ethel can remember her film titles. A large body of research, in addition to Gustavo and Ethel, supports the predictions of Ribot’s Law. That Gustavo and Ethel were happy at the Healthy Living Club would have made Ribot happy I am quite sure too.

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Rocking around the Xmas Tree

Starring

@KateSwaffer
@BethyB1886
@WhoseShoes
@TommyNTour
@Jeremy_Twunt

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Blurred lines in English dementia policy – privatisation in all but name

In case you don’t like the soundtrack, here are the slides.

To some extent, Europe resolved our dispute about whether we should aspire to an ‘early diagnosis’, or ‘timely diagnosis’ for dementia. The overall consensus from the European ALCOVE project was that a diagnosis should be timely, in keeping with the needs of the person with a dementia, his friends, his family or his carers.

This was an extremely helpful move in English policy, although the road had not been that clear.

One blurred line in the public was how dementia so massively became conflated with all memory problems in the elderly. Whilst it was argued that the memory problems in Alzheimer’s disease should no longer be passed off as ageing (and indeed there are strong cultural pressures elsewhere for calling dementia ageing), there was some concern from GPs that older people thought their memory problems were dementia because of the widespread media campaign. Many of these individuals were later to arrive at a diagnosis of minor cognitive impairment, underactive thyroid, or depression. Given that there are hundreds of different causes of dementia which can affect any part of the brain and brainstem (though they all tend to start off in different areas), it’s not altogether surprising that some of the dementias don’t present with memory problems at all.

The drive to make the diagnosis is almost certainly going to be affected by the policy from NHS England to achieve ‘ambitions’ for increasing dementia diagnosis rates. The evidence from the MRC study at Cambridge has demonstrated that this prevalence has in fact been falling over some decades, so there is serious concern that a drive to increase dementia rates will lead to a large number of false diagnoses in 2014. This is definitely one to watch, as a false diagnosis can lead to very serious harmful repercussions. Nonetheless, the number of people who have a MMSE in the region of 10-15 on initial diagnosis is, arguably, staggering, and blatant lack of diagnoses of more obvious presentations of diagnosis most people would agree is unacceptable.

The spotlight in G8, and certainly the presence of corporates there, will lead to increased scrutiny of those people who financially have much to gain from an early diagnosis. An early diagnosis may indeed lead to someone ‘accessing care’, even that care results from a personal health budget with treatments which are not proven clinically from the evidence. The direction of this particular plan depends how far individualised consumer choice is pushed in the name of personalisation. Genetics, neuropsychologists, and pharmaceutical private sector companies wishing to monitor the modest effects of their drugs on substances in the brain all stand to capitalise on dementia in 2014, much of which out of the NHS tax-funded budget. This of course is privatisation of the NHS dementia policy in all but name. One thing this Government has learnt though is how to make a privatisation of health policy appear popular.

Despite corners being cut, and the drive to do ‘more for less’, it will be quite impossible to avoid making a correct diagnosis in individuals thought to have a dementia in the right hands. A full work-up, though the dementia of the Alzheimer type, is the most common necessitates a history of the individual, a history from a friend, an examination (e.g. twitching could be associated with the motor neurone disease variant found in one of the frontotemporal dementias), brain scan (CT/MRI/PET), brain waves (EEG), brain fluid (cerebrospinal fluid), bedside psychology, formal cognitive psychological assessment, and even in some rarely a brain biopsy (for example for variant Creutzfeld-Jacob or a cerebral inflammatory vasculitis).

Analysis by paralysis is clearly not desirable either, but the sticking point, and a blurred line, is how England wishes to combine increasing diagnostic rates; and making resources available for post-diagnosis support; making resources available for the diagnosis process itself including counselling if advised. As the name itself ‘dementia’ changes to ‘neurocognitive impairment’ under the diagnostic manual DSM in 2015, the number of people ‘with the label’ is likely to increase, and this will be ‘good news’ for people who can capitalise on dementia. The label itself ‘neurocognitive impairment’ itself introduces a level of blur to the diagnosis of dementia itself.

The general direction of travel has been an acceleration of privatisation of dementia efforts, but this to be fair is entirely in keeping with the general direction of the Health and Social Care Act (2012). A major question for 2014 is whether this horse has now truly bolted?

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When we know when "the war against dementia" is over?

051214-M-7339E-004

In writing this article, I have no intention of ‘sanitising’ dementia. I’m mindful of two recent comments which fell in my path indirectly: “Dementia is such a cruel disease” (by a daughter of someone living with dementia), and “I don’t know of anyone who doesn’t suffer something as a result of his or her dementia”. The purpose of this article is just to review common motifs in dementia media communications.

When will know when the “war against dementia” is over? This is not an altogether frivolous question, as a MP once famously asked Tony Blair in Prime Minister’s Questions, “When will the war against terrorism be over?”

On 28 November 2013, about dementia, Jeremy Hunt wrote in the Telegraph: “It is a truly horrible disease“.

This set the ‘mood music’ for some of the G8 dementia conference, but the G8 conference was indeed a very positive occasion.

Recently, in “The Loss of Sadness”, Horwitz and Wakefield (2007) wrote that, while depressive disorder can certainly be a devastating condition warranting medical attention, the apparent “epidemic” in modern culture reflects the way the psychiatric profession (perhaps under the influence of pharmaceutical companies looking to widen markets) has understood and reclassified normal human sadness in the DSM-IV as a largely abnormal experience.

The popular metaphorical framing of dementia seems to operate on two levels. It is generalised as a vast, natural or monstrous force that we must “fight”, and it is also located as a very specific condition that affects individuals in extreme ways. In both cases, the effect is to make us feel both terrified and relatively powerless. As Terry Pratchett, who is reported in the public media as having a condition akin to posterior cortical atrophy, viewed: “People seem to think of Alzheimer’s as something rather terrible and dreadful, almost as if witchcraft is involved”

Literally meaning ‘‘away’’ or ‘‘out’’ of ‘‘mind’’ or ‘‘reason’’ in Latin, the actual term ‘‘dementia’’ entered the English language from the French ‘‘de ́mence’’ via the French psychiatrist Philippe Pinel, who made notable contributions to the categorisation of mental disorders in the late 18th and early 19th centuries. Over the centuries, the phenomenology of dementia has been causally associated with witchcraft, moral degeneracy, bad blood and a dissipation of vital energy from the brain, among other factors.

The Wordie for David Cameron’s speech at the G8 summit is indeed interesting, and to be fair in the vast majority is largely upbeat and positive. Whilst there is no recording of the speech on YouTube, the full text of the speech at the ‘G8 dementia summit’ at Lancaster House on 11 December 2013 is available here.

Wordie

The opening to this speech was pretty chilling, however:

“It doesn’t matter whether you’re in London or Los Angeles, in rural India or urban Japan – this disease steals lives; it wrecks families; it breaks hearts and that is why all of us here are so utterly determined to beat it.”

What exactly is this “it”? What kind of creature is it which steals, wrecks and breaks? This is the fundamental problem. Dementia is not a creature, it’s not an alien, it’s not a mega monster even. It’s an umbrella term covering about 200 different conditions where parts of the brain lost structure and function, leading to problems for that individual; however certain functions remain in the earlier stages, which is why it is potentially unfair to use such graphic language.

It is therefore with some irony Jeremy Hunt had concluded his piece in the Telegraph thus:

“With advances in medical science, the commitment of governments across the world and a willingness from everyone to change attitudes, we truly can be the generation that beats dementia.”

And it’s not the first time David Cameron had used this turn of phrase. In his keynote speech about increasing funding for dementia, the U.K. Prime Minister talked about “the quiet crisis, one that steals at lives and tears at the heart of families” (March 26, 2012). As was noted at the time, this language echoes descriptions of primeval monsters such as Grendel in the Anglo Saxon poem “Beowulf”. Dementia becomes an invader or evil monster that creeps up on people and steals them from themselves. Correspondingly, people living with dementia correspondingly become “victims”.

BS

Noticeably, the Wordie includes “malaria” and “AIDS”. This is because of the following line:

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS and we are just as resolute today.”

Jeremy Hunt in the Telegraph had written:

“In the Sixties people were too scared to talk about cancer. In the Eighties the same happened with HIV/Aids. After a long and painful journey, we are now much more open about both – and better able to tackle them.”

It seems that this parallel with HIV/AIDS and cancer has been very carefully choreographed. There are indeed some successful treatments for many cancers, but cancer like dementia is an umbrella term covering a wide variety of conditions. A “cure for dementia” is meaningless as a term, as the frontotemporal dementias particularly common in the younger age group are a different pathological entity to the most common type, the dementia of the Alzheimer type.

And how exactly has cancer done?  According to the world statistics from WCRF, there were an estimated 12.7 million cancer cases around the world in 2008, of these 6.6 million cases were in men and 6.0 million in women. This number is expected to increase to 21 million by 2030. How is a similar “war” against HIV/AIDS doing? According to AmfAR, more than 35 million people now live with HIV/AIDS, 3.3 million of them are under the age of 15; in 2012, an estimated 2.3 million people were newly infected with HIV, and 260,000 were under the age of 15. Every day nearly 6,300 people contract HIV—nearly 262 every hour.

Dementia has replaced cancer as the “scourge of modern times”. The discourses of the scientific community reinforce this pervasive sense of horror about the dementias. For example, the prevalence of dementias is described in dramatic terms as an “epidemic”. The prevalence of dementia in the UK has in fact thought to be falling in recent times (hence explaining the formidable Prof Burns’ relative unease about dementia being called a ‘timebomb’ by Emily Maitlis on BBC News, a ‘timebomb’ which crucially scientists have failed to address.)

In 2011 in an article entitled “Dementia crusade’s £20m breakthrough”, the Care Services Minister at the time announced a multi-million pound boost in funding for the fight against dementia. The word “crusade” achieves an interesting multiplicity of effects, including an emphasis on faith and battle and on something that not only is metaphysical but can also be “won.” The overall impression is of dementia as huge and ancient, and of massive significance. It appears beyond our grasp and can only be understood through reference to massive natural phenomena (usually disasters) or in biblical/mythical terms.

Flooding is a particular popular literary turn. The danger of flooding has long been associated with dementia. A 1982 UK report was entitled: “The rising tide: Developing services for mental illness in old age“. Rising tides continue to inform the language of contemporary politicians when discussing dementia.

Cameron likes it too, apparently. He referred to the need for Britain to change its attitude to the “rising tide of people suffering with dementia” (May 26, 2012). Alistair Burn’s article “The number of people with dementia in England: turning the tide – Alistair Burns” continued this “tide” theme.

The press and television documentaries abound in “personal” stories about dementia and in tales of cures that are imminent or preventative measures that can be taken to ward it off. Classifying the hundreds of different types of dementia has also been politically powerful. It has undoubtedly facilitated funding and research into diseases for which it is implied that there will eventually be a cure. Ultimately, this broad brush approach is now being used to argue for a “one glove does not fit all” approach: the big corporate winner of personalised medicine, as explained by Cameron thus:

Take just one initiative – Bio Bank. More than half a million people have volunteered to take part in this providing blood samples, getting their vital signs checked, so we can see how diseases like dementia get signalled. The plan is to use Bio Bank to take brain scans of up to 100,000 people – allowing us to see the earliest stages of Alzheimer’s and other diseases. That is the kind of ambition we’re seeing here in the UK ambition that should give hope to people right around the world.

There’s something subtle at work here with the words “ambition” and “ambitious”. Of particular concern to those worried about overmedicalisation is that some experts are now arguing for treating asymptomatic (‘‘normal’’) people with ‘‘abnormal’’ imaging and cerebrospinal fluid biomarker profiles with long-term preventative therapies. This is exactly what seems to be happening here with Cameron’s comment. In a sign of desperation of Pharma wishing to resurrect an ‘ailing industry‘, multi-national Big Pharma believes that early treatment is key to finally achieving a treatment success of any meaningful magnitude.

There are some expected financial memes: like “economy”, “genomics” and “reinvest”. Whilst the spokesmen officially don’t officially promote particular ‘brands’, the speech explicitly mentions UK life sciences companies, like Ixico, Cambridge Cognition, Psychology Online and Proteome Sciences, in developing new tests for Alzheimer’s Disease. As such dementia can’t be seen as “wealth creating”, so the need to promote private markets and innovation is a delicate one to take. However, David Cameron has increasingly appeared giving speeches in the manner of CEO wishing for corporate investment. As such, ‘cure’, not ‘care’, is where the money is at possibly. Cure’s in the wordie; care is not.

“Fight” is THE BIG prominent word. This recurring linguistic device in the cultural framing of dementia is the reliance on military and war-like metaphors. Cameron has been fighting for some time, it’s a wonder he himself isn’t exhausted. On March 26, 2012, he proclaimed rather triumphantly: “We need an all-out fight-back against this disease; one that cuts across society.”

The dementia “time bomb” crops up frequently in U.K. broadsheets and other tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat. So when will we know when the war against dementia is over..?

Now listen carefully. As sure as night follows day, academics won’t be able to fight these horrible journalists, destroying the ambitions of people trying to live with dementia in a positive light. Whilst the electoral timebomb continues to tick tock, we can find a cure for this government and their partners trying to demonise those people currently trying to live with dementia. While the war will be long, we can turn the tide on the Pharma companies destroying minds with their false promises, and encourage a new dawn after this crisis where wellbeing interventions are treated seriously at last.

See what I did there?

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The "dementia prevalence calculator": for a person to access a timely diagnosis, or for private markets to access the person?

The market philosophy has gripped the NHS by the jugular through policy developments from successive governments. It is argued that all health care systems in the world have to design effective allocative mechanisms for the available “scarce health care resources”. The “dementia prevalence calculator” tool also enables health and care communities to: calculate local dementia diagnosis rates, forecast local dementia prevalence, view trajectories and set “ambitions” (aka targets) for improvement in diagnosis rates and compare diagnosis rates with other localities. Its main problem has been that it has been crowbarred in through various side windows, except nobody knows why public health experts didn’t call for this calculator to come in through a front door. One can now view and compare diagnosis rates on the “Ambition Map”, and link to the “Knowledge Portal” to access a wealth of resources to improve dementia diagnosis rates, and diagnosis pathways. All of this will have taken time, effort and money to set up, so the question of whether it’s worth it, given ‘scarce resources’, is clearly in the public interest. Here is one such example of the Department of Health’s attempts and their partners to disseminate information about “the dementia map”.

Dementia map

So what’s the point of these data? Burns concedes that estimating the number of people who have dementia is important for both local planning and national guidance. Burns freely admits too there have been problems in the past:

“Most current estimates of dementia prevalence (the number of people affected by the disorder) and incidence (the number of people developing it over a defined period, usually one year) are based on studies dating back to the 1980s.”

It’s become clear that a huge “democratic deficit” has engulfed the English dementia policy. The problem for Prof Alistair Burns, who is a genuinely a nice and well-meaning man, is that he can become indundated with various complaints from academics and practitioners. An example is the G8 dementia summit which was presented as a ‘once in a lifetime opportunity’ to talk about dementia. What did, however, happen was that it became a ‘once in a lifetime opportunity’ for various myths to be propagated by the media, using highly charged words such as ‘shocking’, ‘devestating’, ‘crippling’, ‘horrible’, ‘horrific’, portraying the notion that people now on receiving a diagnosis of dementia are just counting their hours until their death. It, likewise, cannot be overstated that the drugs for memory or attention simply do not have a huge effect in the vast majority of patients, and certainly after about fifteen years of published studies on these “cholinesterase inhibitors”, the evidence that they slow down the rate of loss in critical parts of the brain is not terrific. Academics in dementia are currently collaborating across geographical boundaries, so the idea of there now being suddenly a world collaboration is FALSE. A cure for a single dementia is FALSE as there are hundreds of different causes of dementia. Dementia charities of course can mobilise individuals with dementia to contribute in pan-global drug trials in what has been euphemistically been called ‘co-production’, discovering new drugs based on the basis of personal DNA genomic information. Looking at your genetic make-up might tell a practitioner or drug-company your risk of subsequently developing dementia, and so it goes on. The issue is not subjecting the designers of English dementia policy with time-consuming vexatious ‘attacks’; it is hopefully that we can all have an open, transparent discussion of some of the ‘unintended consequences’ of the English dementia policy currently in progress.

In March 2012 the Prime Minister, David Cameron, published his challenge on dementia which set out an ambitious programme of work to push further and faster in delivering major improvements in dementia care and research by 2015, building on the National Dementia Strategy (published on 3 February 2009). Central to the challenge is the requirement that from April 2013, there needs to be a quantified ambition for diagnosis rates across the country, underpinned by robust and affordable local plans (NHS Mandate). This is of course so remarkable in itself in the State having such a strangehold on policy which should in theory be devolved as locally as possible to experts and professionals. A painfully obvious point to those who have done a medical degree is that there will be variation in some rates of particular dementias across the country anyway. For example, in some populations with a predominantly Asian immigrant population with certain risk factors, they might be at high risk of vascular dementias. As it happens, near Warsaw in Poland is thought to have a high prevalence of dementia due to copper overload due to a genetic cluster of an inherited copper metabolism problem called Wilson’s disease. But presumably certain dementia charities and certain politicians want you ‘to get angry’ at those GPs who are underdiagnosing dementia, because they are somehow colluding in keeping this information away from you. This is by the way against their professional code, but you cannot expect people without a medical background who are quite senior in charities or politics to know that necessarily.

I have found that having lack of ability to have a balanced debate (due to enormous information asymmetries) has been quite dispiriting, and clearly hampered by the virtual lack of published research papers in the medical professional literature. Hopefully, the University of Stirling will be able to diminish this ‘research gap’, now that they have been awarded a major grant to investigate this issue properly with no vested interests. This is the only paper on Medline from 1996 if you search for the term “dementia prevalence calculator”. And there is no doubt that the claims of some of the drugs used to treat early dementia in the NHS have been overinflated. Luckily, largely thanks to the work of Glenis Willmott MEP who has been leading negotiations as the European Parliament’s rapporteur on the clinical trials regulation, pharmaceutical companies and academic researchers will be obliged to upload the results of all their European clinical trials to a publicly accessible database, if a deal reached this week is approved, according to a recent report. Indeed, Pharma have got it right about “openness”, but not in the sense of using regulation to allay fears about patient privacy and confidentiality – Big Pharma need to share with the general public their results, and their particular motives and intentions for dementia policy especially if the descriptions are otherwise not easily forthcoming.

I openly admit to being extremely disappointed at one particular plank of English dementia policy: the “dementia prevalence calculator”. It’s incredibly easy to get hold of the marketing shills for CCGs about how they can overcome “the diagnosis gap” for the reported lack of diagnosis of dementia; but there again, the discussion of how there are hundreds of different types of dementia in different age groups is not forthcoming, together with a less than candid explanation of how risk factors for dementia might be tackled. For something so fundamental to English dementia policy, it was deeply distressing to see Prof Carol Brayne’s question on where the Prime Minister saw his “Challenge” progressing on dementia to be passed ‘down the line’ like a rugby ball going backwards with effortless ease first to Mr Jeremy Hunt and then with Dr Margaret Chan. To get a decent grasp on why there has been such a drive to improve dementia rates, you have to go across the Atlantic and research terms such as “needs based resource allocations” in health maintenance organizations (sic). These papers are written entirely from the business model perspective, so do not have any intention of wishing to address remotely the professional concerns of senior clinicians in dementia.

Like all 500 pages of the Health and Social Care Act (2012), there was no open discussion of the need to “turbo boost” the outsourcing of NHS contracts to the private sector. Likewise, meaningful discussion of the perils of ‘case finding’ and ‘screening’ in dementia have largely been throttled at source (though Dr Martin Brunet has been raising awareness of the perils of incentivising GPs to up their rates of dementia diagnosis through ‘case finding’ in primary care, of course drawing attention to the hugely stigmatising “false diagnoses of dementia”). Nonetheless, through the combined efforts of the European ALCOVE project (including Prof Burns and Dr Karim Saad), it’s been successfully argued that,

“Dementia happens to people, living in their families and their communities. It does not happen just to their brains. When people have worrying symptoms they want health care professionals who can spot the signs, take their concerns seriously, diagnose the problem accurately, so they can get the most up to date treatment and advice.”

This is a helpful slide from Prof Dawn Brooker’s presentation for the UK Dementia Congress Conference 2013 entitled, “Benchmarking against ALCOVE recommendations for timely diagnosis in dementia”:

Dementia Awareness

This discussion embarrassingly even led to Prof Burns trying to find Dr Brunet at his practice for a frank chat about the policy, but Martin unfortunately was away that day.

Binscombe

Of course, if you’re going to introduce a policy to ‘up the dementia rate’, it possibly will run into problems given that the actual prevalence of dementia has appeared to be falling. The first UK Cognitive Function and Ageing Study (CFAS), known as the Medical Research Council (MRC) CFAS, began in 1989. One of a suite of European prevalence and incidence studies (forming the EURODEM collaboration), it was designed to test for geographical differences within the UK, across populations with widely varying characteristics, including vascular health. The study published by Matthews and colleagues (2013) in the Lancet confirmed that later-born populations have a lower risk of prevalent dementia than those born earlier in the past century. The general prevalence of dementia (overall numbers of people) in the population might be subject to change. Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease. By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality, and increased early life education, which is associated with reduced risk of dementia. Where possibly primary care will have the greatest impact will be in tackling the risk factors they do anyway for cardiovascular disease, i.e. better diabetic control, tackling cholesterol, smoking, ‘poor diet’, or high blood pressure. This in itself is not a valid reason to avoid improving diagnosis rates of dementia (especially these are treatable risk factors for vascular dementias.)

Health maintenance organizations (HMOs) have been argued by their supporters as a “cost-effective’ way to provide health care. In the United States, in allocating resources in the HMO, the rationing of preventive services appears to be one of the principal questions where the potential benefits (i. e., efficacy) of a service are considered in relation to costs of healthcare. The direct counterpart of the HMO in English health policy, following the enactment of the Health and Social Care Act (2012), is the “clinical commissioning group”, which act as state insurance schemes for pooling risk in population samples.

Just because there’s no effective treatment, there’s still a business case to be made for ‘opening up new markets’ of persons with dementia. For example in the NHS Outcomes Framework 2013/4 domain CB_A9 covers an estimated diagnosis rate for people with dementia, with an aim of “improving the ability of people living with dementia to cope with symptoms, and access treatment, care and support.“. The rationale is therefore stated as:

“A diagnosis enables people living with dementia, and their carers/families to access treatment, care and support, and to plan in advance in order to cope with the impact of the disease. A diagnosis enables primary and secondary health and care services to anticipate needs, and with people living with dementia, plan and deliver personalised care plans and integrated services, thereby improving outcomes.”

According to articulation of neo-liberal ideology, the main justification of the reforms is to make resource allocation “more efficient, more innovative and more responsive to consumers’ preferences” than centrally integrated health systems (Ven 1996, p. 655). The effect of this change in philosophy is the introduction of activity-based resource allocation and funding as a system of paying hospitals and other health care providers on the basis of the work they perform rather than previously applied defined budgets based en bloc global contractual considerations. This new system relies on cost-and-volume and cost-per-case contractual relationships, in which payments are closely linked with the services offered, and clearly the information from “dementia prevalence calculators” is useful here. Conceptually, “dementia prevalence calculators” have been presented on equity grounds, i.e. tackling the inequity of a postcode-lottery diagnosis of dementia. However, this makes a fundamental assumption that there cannot be geographical variations in the prevalence of dementia. I repeat the point – any practising physician would know that this assumption is entirely erroneous, as vascular dementia prevalence rates for cardiopaths for diabetic hypertensive individuals in Tower Hamlets in a ghee-laden diet might be hypothesised to be quite high? The actual drive for the ‘dementia prevalence calculator’ is to open up new active markets, in a form of ‘payment of results’. According to Gay and Kronedfeld (1990), the gradual evolvement of an activity based resource allocation can be traced to the United States, where from 1983 most reimbursement for health care providers had been based upon the Diagnosis-Related Group (DRG) where patients within different categories were classified as clinically similar and were expected to use the same level of hospital resources.

Having a ‘care plan’ for dementia is potentially advantageous in that it can provide harmonisation with private insurance systems. The ‘Kaiser Permanente Care Management’ program contains guidelines and recommendations on how dementia care should be provided to Kaiser enrollees. The new program is an informational resource only and is not a substitute for clinical judgment based on the individual needs of patients. The program includes nine “key principles” on diagnosing and caring for patients with dementia and support for their caregivers. These principles include early identification and diagnosis, connecting caregivers to vital community resources, developing a care plan, and monitoring and adjusting medication use. With the introduction of “whole person care” (or similar models of integrated care in the next government), it is likely health and social care will be taken down a “final common pathway” of the ‘personal budget’ or ‘individualised’ budget (see this article for a recent discussion of some of the key themes from the English healthcare thinktanks). The commercialisation of care, under the guise of control and budgets, is, in fact, of course a complete anethema to genuine principles of professional person-centred care. And merging a universal system which has lots of highly personal data (NHS) with one that is heavily conditional (benefits) has all kinds of risks. In the long run it could make it still easier to restrict access to healthcare on the basis of economic status or behaviour.

While GPs and the public are clearly none-the-wiser about the goal of upping the diagnosis rates, already work is being done on the barriers and solutions for implementation of personal health budgets in dementia. Claire Goodchild’s report for the Mental Health Foundation from October 2011 still makes for interesting reading. Goodchild argues that, “individualised, tailored support and care that a personal budget can facilitate can have enormous benefits to a person with dementia“. The irony is of course that Big Pharma may not actually end up the big beneficiaries of this drive, unless they can make their medications relevant to individuals with dementia in this brave new world. While the G8 conference was an effective pitch for personalised medicines for Big Pharma, relatively little attention was given to psychological therapies or carers, aside from ‘dementia friendly communities’ which bring competitive advantage to the included corporates (and benefits for persons with dementia too). Personal budgets are all about choice and control; it is unlikely that a person with dementia will be unaware of the personal spending decisions that he or she can make to improve wellbeing (deferred to a carer where that person does not have capacity); but other valid interventions do include the assistive technologies and innovations which curiously did also make a mention in the G8 dementia.

Therefore, at first blush, it might look a bit random having a ‘dementia prevalence calculator’ and then all the shennanigans of the G8 dementia summit, but whilst the English government cannot as such make dementia ‘wealth creating’, it can do its best to open up new markets. It hasn’t been an accident that the question, “Have you had problems with your memory?”, has been suggested for those ‘health MOTs‘ which private healthcare would love to get off the ground. And the big beauty of this plan when NHS budgets are looking to do ‘more with less’ or implement ‘efficiency savings’ (or cuts to frontline care, more accurately) is that the NHS budget itself won’t ‘take the hit‘. It is hoped that with the implementation of whole person care budgets somebody will be able to ‘top up’ payments for care (e.g. “co-payments”), and the patient (or customer) will now pay for care providers in the private sector too. Do the treatments actually have to be proven to work? Absolutely not, if the experience in personal health budgets is anything to go by, but that’s not the point. As David Cameron might say, “Oh come on.. please do keep up!”

Further reading

Gay E.G. and Kronedfeld J.J. (1990). “Regulation, retrenchment – the DRG experience: problems from changing reimbursement practice”. Social Science and Medicine. 31 (10), pp. 1103-1118.

Ven, W.P.M.M., van de. (1996). “Market-oriented health care reforms: trends and future options”. Social Science and Medicine. 43 (5), pp. 655-666.

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Why I wrote 'Living well with dementia'

LWD2

Living well with dementia: the importance of the person and the environment for wellbeing” is my book to be published in the UK on January 14th 2014. I have written it on my own, but I have drawn on the published work a number of Professors working in the field of dementia have sent me. I hope the advantage of having an overview of their research programmes has been to put together with one voice where exactly this approach might be heading using the most contemporary published papers. I am enormously grateful that these busy Professors were able to supply me with their recent papers.

I was asked by my publishers to provide pointers about what a “marketing strategy” for this book might be. I can honestly say that, having given considerable time to thinking about this issue, I have no intention of pursuing a conventional promotion of my book. I don’t intend to do nothing, but I can confidently say that this book will be widely read. I have no intention of flogging it to commissioners, who will have their own understanding of what health or wellbeing is in the modern construct of NHS England’s policy.

I do, however, have every intention of addressing what I think is a major shortfall in the medical profession in their approach to dementia. Their emphasis has been, where done well, the exact diagnosis of dementia through an accurate history and examination of a patient, with appropriate investigations to boot (such as a CT scan, MRI, lumbar puncture, EEG or cognitive psychology). The combined efforts of Big Pharma and medics have produced limited medications for the symptomatic treatment of memory and attention in some dementias, but it would simply be a lie to say that they have a big effect in the majority of patients, or that they reverse the underlying the disease process consistently and robustly.

But that’s the medical model, and certainly the ambition for a ‘cure’ is a laudable one. I found the recent G8 dementia summit inspiring, but a bit of a distraction from providing properly funded solutions for people currently living with one of the hundreds of dementias. Many of us in the academic community have had healthy collaborations for some time; see for example one of the Forewords to my book by Prof Facundo Manes, Chair of Research of the World Federation of Neurology (Dementia and aphasia). To say it was a ‘front’ for Big Pharma would be unnecessarily aggressive, but it has been openly admitted in the media that a purpose of the summit was to assist ‘an ailing industry’.

I think to emphasise what might be done for future patients of dementia would be to fail to maximise the living of people with dementia NOW. By this, I mean a correct and timely diagnosis of an individual, the suggestion of appropriate assistive technologies and innovations, appropriate leisure activities, and the proper design of a positive environment (whether that be a ward, a house or external environment).

My book is strongly footed in current research, but I openly admit that research does not have all the answers. I should like there to be a strong emphasis also in non-pharmacological approaches, such as the benefits of life story and reminiscence, art or dancing. Lack of current research certainly does not make these approaches automatically invalid, particularly when you consider the real reports of people with dementia who have reported benefit.

The main reason is that I do not wish to organise attendance in a series of workshops or conferences about dementia is that I do not wish to be perceived as selling a book. I am more than happy to talk about the work if anyone should so desire. A number of my friends are very well-known newspaper journalists, and I deliberately have not approached any of them as I consider this might be taking advantage of my friendship. I haven’t approached dementia campaigners, or other dementia charities, as I don’t wish to get involved in some sort of competition for other people’s attention. I haven’t sought the ‘celebrity backing’ of some senior practitioners in dementia, although Prof John Hodges (a world expert particularly in the frontotemporal dementias) kindly wrote one of my Forewords. If people wish to discuss the issues in a collaborative manner to take English policy further, I’d be delighted.

At the centre of this book is what an individual with dementia CAN do rather what they cannot do. If you’re looking for a cogent report into the medical deficits of people with dementia, you’ll be sorely disappointed. I spent about 10 years of medical training at undergraduate and postgraduate levels, without having heard of personhood or Tom Kitwood’s work once. I think this a travesty. As a person who is physically disabled himself, the need to understand the whole person is of massive personal significance to me. I think that, beyond doubt, future training of anyone in the caring professions, including medicine, will have to start with understanding the whole person, rather than seeing a patient with a series of problems to be cured or symptomatically addressed.

No academic, practitioner, or charity can have a monopoly of ideas, which is why I hope my book will be sincerely treated with an open mind. People have different motivations for why they get involved in dementia; for example, a corporate wishing to be part of a ‘dementia friendly community’ through a charity might have a different guiding principle to an academic at a University wishing to research from scratch some of the fundamental principles of a dementia friendly community. Despite all the “big players”, nobody can match up to THAT individual who happens to be living with  dementia; that person is entitled to the utmost dignity and respect, as brilliantly expressed by Sally Marciano in her powerful Foreword.

I am hoping very much to meet up with some personal friends that I’ve met in the #dementiachallengers community on January 18th 2014, and this is as close as I’ll get to the book launch. But I hope you will find the book readable. I don’t feel that there’s any other book currently available which bridges these two totemic topics (dementia and wellbeing); but I hope there are other good reasons for reading it!

LWD1

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I'm not suffering with dementia, I'm living, it's not the end, but the beginning.

Thanks to Sally Goldsmith (@salthepoet) from the Joseph Rowntree Foundation (@jrf_uk) for sharing on her YouTube channel.

Commissioned by the Joseph Rowntree Foundation, this song was performed by older people at their ‘A Better Life’ event in December 2013.

It was made from the real words of Agnes Houston of the Scottish Dementia Working Group.

Sung by Plaxton Court choir, Scarborough and Osbaldwick Community Choir, York the solo by Jean Crabb from Hartrigg Oaks, York, it was written by Sally Goldsmith and arranged and musically directed by Val Regan.

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A binary choice between personalised medicine or person-centred care? We can’t go on like this.

This piece of mine is to appear in ‘My Health Skills’ tomorrow. I have been given permission to reproduce it here.

In 2009, the then Government in England published its five year strategy for dementia. It’s therefore very timely, as we approach 2014, to take stock the direction of our policy, and to evaluate critically where its opportunities and pitfalls might now lie.

In 1999, I published at Cambridge a paper on the early diagnosis of the frontal dementias from a cognitive neuroscientific perspective. This paper is indeed well known in itself, and is currently cited in the chapter on dementia in the Oxford Textbook of Medicine. Since then, the language in national policy overall has changed from ‘early’ and ‘timely’ regarding the clinical diagnosis of the dementias, in part due to the valiant efforts of Prof Alistair Burns (the national clinical lead for dementia in England). I feel this is a very welcome move.

Above all, the diagnosis of dementia should be appropriate for the right time in a person’s life. The discussion of wishing to improve national diagnosis dates indeed dementia is a valid one, but really does need to be in expert hands. There are hundreds of different causes of dementia, albeit the dementia of the Alzheimer type is the most common one globally. I’d be the first to say the person ‘comes first’, in that I’m a card-carrying advocate of Tom Kitwood’s “personhood”. The diagnosis of a dementia in an individual nonetheless should be on clinical need not the need to meet a national ‘target’. On the other hand, a correct diagnosis of dementia can be enable someone to ‘access’ appropriate services. Large volumes of money should not be pumped into increasingly gimmicky ways of diagnosing a dementia; the system for a correct diagnosis and correct post-diagnosis support must be funded properly.

In my view, the drive to understanding living well with dementia doesn’t simply come from the fact the “drugs don’t work” (don’t work very well in early stages of dementia, that is.) The benefits of a class of drugs in dementia called cholinesterase inhibitors have undoubtedly been overstated in the media, alarmingly often by fundraisers themselves for dementia research. After nearly 15-20 years of trying, the published evidence for cholinesterase inhibitors having a beneficial effect on memory and attention is minimal. The evidence that they slow down progression of that syndrome is very poor. The evidence that they significantly decrease the rate of atrophy in critical parts of the brain in that syndrome is poor.

That is not to say, at all, that these drugs have been useless. I know personally of carers of individuals who’ve reliably reported good effects (and it may be that they may be particularly effective in certain types of dementia such as Lewy Body dementia.) Pharma has taken up a huge amount of funding for ‘research and development’; but this is at a time when carers are on zero-hour contracts. Many people currently report that caring does not appear to a prestigious vocation this merits further scrutiny. That is wrong.

From that perspective, last week’s G8 dementia conference was truly a missed opportunity. It is hard to find a single ‘cure for dementia’ especially given that there are hundreds of different causes of dementia at least. However, an outcome to slow progression or cure outright types of dementia is an ambitious yet admirable claim. A promise, though, to disseminate examples of dementia care is not the same as investing in necessary and sufficient care. These important questions were left unanswered. The media invariably reported dementia debate in hysterical language, using words such as “time bomb” and “catastrophe”. I resented this because it was if the media wished us to be angry that we all hadn’t noticed that dementia is important (aside from the fact that I have given all my adult life to studying it.)

Even when I was a junior doctor in the dementia firm at the National Hospital for Neurology and Neurosurgery more than a decade ago, I was totally unaware of personhood. It’s clear people working on dementia in different disciplines don’t communicate with another. It would be a sign of humility of the medical profession if they could acknowledge that they do not have all the answers, particularly if members of that profession have all their eggs in the ‘cure’ basket. Much can indeed be done to help a patient to live well with dementia, including optimising design of the ward, home or built environment, improving advocacy services, improving information about dementia services, and improving access to leisure activities, for example. There is much wonderful work currently in progress in developing assistive technologies and ambient assisted living technologies, which potentially could improve the wellbeing of people with dementia, in the context too of telemedicine and telehealth.

I firmly believe in acknowledging the value of social capital of those caring for people with dementia, including friends and families, but certainly we need to appreciate that caregivers themselves can need support. This is because people with dementia can be open to financial abuse themselves, and need some form of legal protection. ‘Dementia friendly communities’, I feel, potentially provide a wonderful mechanism for we can include people with dementia in society. But, even there, we need desperately high quality research to match the marketing output of corporates seeking competitive advantage. Peer-reviewed published research on this in the medical journals is virtually non-existent.

The focus on G8 dementia, from the perspective of Big Pharma, was unashamedly ‘big data’. The undercurrent that personalised medicine, involving sharing of drug trials data and possibly genomic information across jurisdictions, was pretty obvious to me. The way that corporate investors sought to ‘rent seek’ through changes in the law to allow ‘flexibility’ was also a warning sign for me. And of course people with dementia are more than generous with their efforts to ‘co-produce’ a solution. But as the dementia debate becomes increasingly complex, and as people with dementia want real solutions to shortfalls in the caring system, we have to be quite brutal as a society in questioning one huge issue.

Now from a sedentary position as an academic, I don’t want to be mistrustful of people’s motives. I don’t want to further a feeling of apprehension. I do, however, think it’s unfortunately the case that, apart from the wonderful people themselves living with dementia, there are some vocal ‘stakeholders’ in the dementia world who have their own agendas to pursue. And all too easily they add noise and confusion to the actual signal.

Has this really become a binary choice between personalised medicine or person-centred care? We can’t go on like this. No it hasn’t, whatever politicians and their admirers tell you – the person with dementia will always come first, as far as I’m concerned.

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