I recently noted this request:
Anybody who has read my writings on Hole Ousia will be aware that I have a dislike of the current mechanical language that would seem to be particularly favoured by healthcare improvers. So I am not convinced that a tool like a “costometer” (had it been invented) would manage to measure the outcomes that really count!
It is my impression that we seem to have many more conferences today than we once did. Sometimes it is the case that one finds that these conferences involve the same speakers covering well rehearsed topics. One such recurrent topic is “awareness”.
It often seems to me that there may be less “awareness” of interests that may lie behind such conferences. Here, please do not be tempted to think that I am referring to the pharmaceutical industry alone. It is the case that many conferences today are those organised by charities, Royal Colleges, health improvers, third sector agencies and by government bodies.
The “costometer” is an invented tool. If it did exist, could it really measure the true value of all these conferences?
This editorial, an opinion piece by Prof David Healy, was recently published in the BMJ. In this post I intend to explore the arguments made around whether “chemical imbalance” was ever part of standard medical teaching. I will also explore the suggestion, made by some experts that antidepressant prescribing in the western world is “conservative”.
A psychiatrist in training gave his view that the above reply was “the cleverest” and then offered his own reply:
The psychiatrist in training then gave the following link to what he called: “the sensible reaction”:
I found that I agreed with the statement made in this “expert reaction” by the President of the Royal College of Psychiatrists:
However I found that I did not share the view of Professor David Taylor that the “idea that SSRIs correct an imbalance in the brain never really existed”:
In the 1990’s, as a psychiatrist in training, I followed the “Defeat Depression Campaign”. A central plank of this was the “chemical imbalance theory” involving serotonin. There was hardly an educational event that I went to where a “Stahl” neurotransmitter diagram was not displayed. Even up till 2007, I still found the Stahl diagrams appearing as part of my CME education:
In response to Professor Healy’s article on serotonin and depression it concerns me that experts such as Prof Philip J Cowen and Prof David Taylor are suggesting that the “chemical imbalance theory” always was “mythical”. I was there. It was a very real part of my “education” and often given by experts of the day.
Furthermore, it would seem to me that such expertise is considered as sufficient in itself rather than including experience of taking SSRIs both short and long-term.
In his BMJ editorial Professor Healy gave this stark 2015 statistic:
It has been argued that this figure indicates over-diagnosis:
A few years before this debate I gave a view on antidepressant prescribing from “my own window” which I submitted as a rapid-response in the BMJ. As I journey through life I often find my views change, but the view from the window I looked out from in 2011 seems still to be very much the same to me.
I was very sad when Professor Ian C Reid died last year, prematurely, as the result of cancer. I trained with Ian Reid in Aberdeen and he was an inspirational speaker and a most committed scientist. His loss is significant.
This research study was published in the British Journal of General Practice in September 2009:
The study gave a conclusion that I agreed with:
The study supported my view that GPs do not indiscriminately prescribe antidepressants. Here, I should be clear, I am talking about newly diagnosed depression, in a time more than a decade on from the likes of the “Defeat Depression Campaign”. However it remains true that access to psychological therapies, in NHS Scotland, remains a very real “challenge”.
Professor Ian Reid went on to say:
And gave his view that:
It is here I depart from sharing Ian Reid’s view. My view is that we need pluralistic evidence, rather than expert opinion alone, that chronic prescribing of antidepressants represents an “improvement in practice”.
The medical profession are generally of the view that long-term antidepressant prescribing is “appropriate” because it is likely that most individuals taking antidepressants have a “recurrent illness” and that such is often demonstrated when they stop taking their antidepressants.
The problem is that most studies into antidepressants, on which prescribing is based, have been short-term studies, often only 6 weeks. Without longer-term studies and the evidence of experience, we simply cannot be sure why so many individuals receive long-term antidepressant treatment.
In summary: It is certainly the case that antidepressants are widely prescribed in the Western world. In my view we need to see more evidence that prescribing of antidepressants, particularly chronic prescribing, is “appropriate” and “conservative”.
Note to reader:
I am not a "Critical Psychiatrist" as I prescribe psychoactive medications including antidepressants. I try to do so only if indicated, and if this is the patient's preference. To prescribe "appropriately" I do my best to share the knowns and unknowns of antidepressant prescribing along with explaining potential harms and potential benefits. One potential unknown is the optimal duration of prescribing. Professor Reid's evidence would appear to demonstrate that long-term prescribing is common practice.
In Part II of my review of dementia I am going to offer my personal “journey” through policy developments in the UK over the year past.
To help you on my “journey” I will “sign-post” you with six points of arrival and departure. These will be sign-written as the following sub-headings: (1) Driving Seat; (2) On the Map; (3) Cart or Horse; (4) Wrong Direction; (5) A timely Arrival; and (6) The Summit is reached?
(1) DRIVING SEAT:
Part II of my personal review will start out by asking who is in the driving seat of policy for dementia in the United Kingdom?
I have great respect for Professor Alistair Burns, National Clinical Director for Dementia in England and Wales and indeed his Scottish equivalent, Dr Gary Morrison the National Dementia Lead. Both National Leads, in a number of co-authored responses to the debate on early diagnosis that ran throughout most of last year, confirmed their view that clinicians were in the driving-seat:
“…. by putting clinicians in the driving seat of any clinical assessment will protect individuals against any inappropriate intervention.”
Geoff Huggins, Head of Mental Health at The Scottish Government, seems to be of a different view, and in the evidence he gave to the Westminster Parliament concedes that many of us have a tendency to believe that we are better drivers than “others”:
“Target Implementation: Generally, our experience – and I am not a doctor myself, but I am a driver, and I believe I am a better-than-average driver, although I know that many people hold these beliefs until something is shown to them to demonstrate that they are not quite doing what everybody else is doing5.”
My view, as to who should be in the “driving seat” returns to “scientific pluralism” as described by Mary Midgley and which should be the basis behind effective Public Health. We have no singular driver. No single map. No single scientific answer. We need to approach dementia from an understanding that it is complex, and as complex as we humans are. Given his concern about “toxic uncertainty” it is interesting to learn from the programme for the National Dementia 2014 Conference for healthcare professionals that Professor Sube Banerjee will be giving a talk on “Complexity and dementia”.
For me, the best ‘drivers’ of 2013 have especially been those with lived experience of dementia. Richard Taylor has been an international voice, who always protests that he is just one voice adding to the shared journey we are on in understanding dementia. Richard Taylor repeatedly asks a question that, Professor Carol Brayne apart, key opinion leaders, just like politicians, will not ask: “What do we mean by Alzheimer’s disease?” If you are ever at a conference about dementia, I would suggest that this is a good question to ask. I make a point of asking this question all the time, not just to academics, but to charity leads and policy makers as well.
“It is not that all these folks are only interested in their own selfish interests. It is not that they are all bad people working under the spell of the devil him/herself. It is they have been living with a self cloistered community whose walls over the past twenty years, whose conferences have fed on the same situation ethics which now feeds our beliefs . . . It’s okay to continue to more and more confused the meaning of the words Alzheimer’s and Dementia. It’s alright to undermine, boycott, give lip service to psycho-social research while trying to convince Nations that huge amounts of limited resources need to be spent cure/bench research and or a better understanding of why only 3% of those diagnosed seem to have a genetic connection with at best an increased probability of living with the symptoms of dementia in their later years.
It occurs to me that the “driving seat” metaphor is a poor one as it suggests that policy is informed and led by a single guide. It seems to me that those in the “driving seat” of dementia policy are in a juggernaut. Such juggernauts have commercial interests beyond what Robert K Merton defined as the true basis of objective science – the spirit of research and innovation for science alone. The “dementia challengers” are an eclectic group of wonderful advocates for dementia who are now effectively adding real-world navigation to this juggernaut. Along with the dementia challengers, I insist that a true science of dementia must carry the experience of those living with dementia and those who care for them.
(2) ON THE MAP
The mapping approach taken by the Scottish Government to case-finding has since been adopted by the Department of Health – though they talk of “ambitions” rather than targets. The mapping evidence on “early diagnosis” given to the All-Party Parliamentary Committee 88,87, and backed by the Royal College of General Practitioners, resulted in the ‘Dementia DES’. This controversial incentivised approach, based on case-finding-cum-screening, was openly debated at the Annual Conference of General Practitioners in Harrogate, but not before it had been substantially re-drafted. Those on the side in favour of the Dementia DES, (Prof Alistair Burns and Dr Jill Rasmussen) found, after presenting their side of the argument that the GP audience, almost in entirety, did not favour this approach. This is the incentivised world of QOF which many General practitioners feel undermines professionalism and constrains approaches to complexity of presentations. Jeremy Hunt, Secretary for Health, has now come to the same conclusion. It is interesting then that Jeremy Hunt has referred to the same General practitioners as “laggards” when it comes to their approach to dementia.
When Dr Martin Brunet checked the statistics for his practice he found that the Department of Health map confirmed a diagnosis rate of 126.7%! This is where the “dementia prevalence calculator” comes in as an instrument that ‘informs’ and that is backed by our Health Secretary and the Alzheimer Society.
Shibley Rahman, whose book, Living Well with Dementia is to be published in January 2014, shares my concerns on the validity of the “dementia prevalence calculator”:
“I openly admit to being extremely disappointed at one particular plank of English dementia policy: the “dementia prevalence calculator.”
Dr Martin Brunet’s first instinct was that the figures must be wrong. However having heard Jeremy Hunt, Secretary of State for Health, in the video that supports his dementia map, Dr Brunet concluded that the figures must be accurate. Binscombe Medical Centre, according to the calculator, should have 86 patients with dementia but have actually diagnosed 109.
So what should the Binscombe practice make of these 23 patients that should not exist?
Unfortunately these figures are inherently prone to statistical error and were not garnered with any notion that they might one-day form boundary lines on a dementia map. The Delphi figures on which the “dementia prevalence calculator” processes its figures are twenty years old and even then were crude, and at best, only guiding figures. The latest evidence suggests there could be over 200000 fewer cases than previously thought. The margin of error in taking estimates designed for a population of over 60 million, and applying them to a practice population of under 11000 is considerable.
Although the dementia prevalence calculator does not function in Scotland, given my clinician’s experience of HEAT target 4, I was interested to pursue the science behind it. I was surprised not to be able to find any published academic studies on the “dementia prevalence calculator”. I was thus most grateful when Dr Nick Cartmell, GP Lead for Dementia to NHS Devon and NHS South of England replied to an e-mail I sent in August of 2013. The reply from Dr Cartmell was thoughtful, balanced and helpful and acknowledged the limitations of the calculator that he had helped devise:
“So, to date, I think this is the best tool we have to generate percentage diagnosed figures for comparison. Nevertheless it remains a very blunt tool, mainly because the quality of research evidence (and variable definitions of dementia as you suggest below) used by the Expert Delphi Consensus was not high and is now largely out of date. Unfortunately, though, these figures are widely publicised by Alzheimer’s Society and Government in order to try and show the size of the problem and criticise the NHS for under-diagnosing (especially GPs) in the somewhat misguided hope that this will shame doctors into diagnosing more people. In fact, in England as I think was found in Scotland, much of the problem with low identified prevalence is in the quality of GP coding rather than a failure to diagnose …”
Finally, there does seems to be some good news. The recent paper published in The Lancet51 by a MRC-funded collaboration not only offers a more accurate estimated prevalence by Local Authority area but also provides robust evidence that the true prevalence of dementia in 2011 was likely to be 24% lower than Expert Delphi Consensus estimates for the same year …”
So, if the Government continues to want to focus on percentage diagnosed figures I will continue to try and make the calculation of such figures as accurate as possible with the most up to date research evidence available. I want neither the NHS to be unfairly judged on performance by inaccurate figures, nor CCGs and local Authorities to over-commission services because of estimated growth that is significantly higher than reality.”
None of these limitations have stopped The Department of Health and the Alzheimer Society using these diagnosis rates, taken directly from the Dementia Map, as propaganda to create headlines lambasting doctors for being “laggards”or for being “defeatist.”Yet this one-dimensional and seriously flawed map risks taking commissioners away from patients and on to yet another “target.”
(3) CART or HORSE
It is the research currently being undertaken by Professor Carol Brayne and others which should guide our practice. Professor Brayne and colleagues were concerned that by “putting the policy cart before the research horse” risked repeating the mistakes of the past in so many areas where an intervention which had intuitively seemed to be a “good idea” was later proven to cause significant harm.
There has been speculation over the role of the Alzheimer Society in the “early diagnosis” campaign. From across the border, I consider that they are largely responsible for this movement. It would be good to show how much they spend in time and finance on lobbying Government; how much the Alzheimer Society do in “partnership” with the pharmaceutical industry and commercial diagnostic companies, and also to evidence how much of the Alzheimer Society’s revenue is from statutory commissioning rather than charitable fund-raising. All of this should be more transparent to the public. Perhaps in so doing we might persuade Government to listen less to organisations with a vested interest in pushing something beyond objective and pluralistic science.
(4) WRONG DIRECTION
My reading of a recent e-mail from Professor Alistair Burns is that he considers that I may have taken the “wrong direction” by expressing concerns about vested commercial interests.
Dementia is big business, and there are many vested interests that will benefit from a rise in the number of diagnoses. Currently the use of diagnosis target rates is proving to be a highly successful strategy for both politicians and industry. If we fail to question its validity, the ethical concerns that underpin the making of a diagnosis and the danger of overdiagnosis, then we risk replication of this strategy in many other areas of medicine.
“The diagnosis must always belong only to the patient, and never to Government, policy makers or commissioners. An urgent debate is required before this gets out of hand.”
In December 2012 a group that shared concerns over Department of Health proposals to introduce screening for dementia to the GP contract wrote an open letter to the British Medical Journal which was later published and elicited a critical response from a group of eighteen signatories. In this published reply no declarations of interest were made.
Following on from this initial open letter a healthy debate ensued that continues to this day and has now involved many more voices. In the United Kingdom the current system in place for the declaration of conflicts of interests (COI) across all of science and healthcare depends upon voluntary declaration, and it is simply not working. We should be very concerned that a system designed to protect patients from biased opinions relies so significantly on trust. As such, it is vital that there is clear transparency over any potential conflicts involving the key opinion leaders in this debate,,,,
Many influential “thought leaders” (also known as key opinion leaders) found full media attention before the G8 Dementia Summit. I could list them most easily. If you want to find them an internet search of what is in the public domain will be straightforward. However my concern is about the lack of transparency of commercial ties with many of these “thought leaders”. In widespread media dissemination of their “opinions” almost universally no declarations have been given. Equally, the Alzheimer Society, do not routinely publish the declarations of the researchers and academics involved with their charity.
(5) A TIMELY ARRIVAL:
My wife and I have suggested that “it is time to abandon the use of the term “early diagnosis” altogether, to limit the confusion already caused by its overuse.69”
I have reasoned for many years why a timely approach to diagnosis is better. This followed my experience of HEAT Target 4 in Scotland on the early diagnosis of dementia. My experience was that I had to stick my head above the parapet to reason for timely diagnosis. As a practising psychiatrist for older adults I was aware that I was virtually a lone voice across the United Kingdom advocating this. Initially I had support from my local NHS Board but that did not last.
Dr Spence, from his frontline column in the British Medical journal remarked in June 2012 that “early diagnosis is everywhere“ and then two weeks later gave his frontline opinion, on dementia diagnosis. These papers reflected the prevailing approach to dementia right across the United Kingdom. I therefore felt this was a timely moment for me to reaffirm my views:
Dr Spence in his Bad Medicine series spares no specialty in his wish to encourage debate. Responses are varied, often defensive, and I have been interested to see the response so far of my own specialty to his piece on dementia.
The early diagnosis of dementia is an area of legitimate debate. New definitions of dementia (and cognitive disorders more generally) are to be presented in the forthcoming editions of ICD11 and DSM-V. The universal problem that these classifications face is that thresholds of disorders rarely have hard and fast demarcations. In the particular case of ‘early dementia’ it is possible that in the genuine wish to pick up an irreversible condition we are inadvertently over-inclusive when making a judgment on what it means to have ‘significant’ functional impairment. Many other illnesses have seen this gradual mission creep. The risk is that we ensnare a fearful populace: those of our elderly who may never progress to dementia. For this reason I would suggest that we need a diagnostic system that considers risk of disease and gives emphasis to the longitudinal course of the condition. Dementia is by definition a progressive condition; much subtle cognitive impairment is stable or indeed improving and therefore by definition not dementia.
More generally I am worried that we have oversimplified the concept of Alzheimer’s. At the level of policy, implementation, advocacy and medical journalism most of the talk is as though Alzheimer’s disease and its early diagnosis were quite clear-cut things, when the reality is far more complicated.
Such a reductionist approach and the language of fear associated with it (generally unremittingly grim) is actually worsening stigma. Dr Spence’s language falls into this trap but the questions he raises deserve wider discussion and open debate may help reduce stigma.
The informed views of older people, whether they have cognitive loss or not, have not been properly sought. Such consultation needs to happen amidst honest airing of what is to age and the far from simple implications of early memory loss. It is important that such discussions do not rely solely upon the dominant bio-medical paradigm and that they include social and historical understandings of brain ‘disease’.
I admire both the National Tsars for England and for Scotland. Both have tirelessly sought to find ways to bring about the best outcome for those living with, or worried about, dementia. In referencing them to policies implemented around early diagnosis I do so only as both are National Leads and their most influential voices are widely heard.
In Spring 2013 Professor Burns posted on social media an audio recording of his interview with Derek Hill, Chief Executive Officer of IXICO and Professor at University College London. IXICO is a commercial brain-imaging company established in 2004 by Professor Hill. Dr Liam Farrell replied to this tweet by Professor Alistair Burns, stating rather bluntly: “more BS about early dx of dementia”. Professor Burns replied: “thanks good to know someone out there actually reads my stuff. Pleasure … I presumed BS meant ‘best sense’.”
In March of 2013, Professor Burns and colleagues announced what can only be considered a fundamental shift in approach to the diagnosis of dementia: “most people now agree that “timely” is a better way of describing what is trying to be achieved.” This was a most welcome announcement and demonstrates the leadership qualities of Professor Burns. If you wish evidence that this was indeed a substantial shift, you will not need to look too far.
In March 2012 the Inquiry of the All-Party Parliamentary Group on Dementia was held in the House of Commons. The Group heard evidence from a range of experts on “How to improve dementia diagnosis rates in the UK”. The Minutes of the oral evidence session of this meeting of the 13 March 2012 cover more than thirty pages. The word timely does not appear at all.
Giving evidence, Dr Peter Connelly said “I think it is easy to improve the rates of diagnosis” and went on to explain the background to Scotland’s HEAT target 4 on the “early diagnosis” of dementia. Baroness Greengross introduced her final report as follows: “Evidence heard by the APPG highlights just how important early diagnosis is.”
The recent conclusion from the European ALCOVE project, with 19 participating countries was that a diagnosis of dementia should be timely.
(6) THE SUMMIT IS REACHED:
The G8 Dementia summit was held at Lancaster House in London on 11th December 2013. “Delegates included G8 Ministers, researchers, pharmaceutical companies and charities” and the aim was to agree what could be done to:
- stimulate greater investment and innovation in dementia research
- improve the prevention and treatment of dementia
- improve quality of life for people with dementia
The G8 Dementia Summit was organised by the Department of Health and Prime Minister’s Office, 10 Downing Street but in its “summit programme” made no reference that those with lived experience of dementia who were involved as delegates.
The pre-publicity surrounding the G8 Dementia Conference created quite a stir in social media and I submitted the following to the British Medical Journal a few days before the summit was held:
“The G8 Dementia Summit is about to begin. Let it promote objective and transparent science and person-centred care. Research and innovation must flourish but in a way that is to the benefit of all those living with dementia and those who care for them.”
I took the day off work to watch the G8 Summit live stream. I was delighted that dementia was being discussed at such a high level. For me the highlight of the day was Beth Britton and I was also most impressed by EU Commissioner Tonio Borg and Daniel Bahr German Minister for Health.
Rahman, author of “Living well with dementia” 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. 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’”
There was much that I took away as positive from this G8 Summit. However I must be honest: I have concluded that overall the G8 dementia conference was a completely missed opportunity. Underlying this conclusion was the fact that dementia was generally referred to as “Alzheimer’s” and that all talk reduced dementia in our elderly to a seemingly singular entity, independent of complexity, and unaffected by accumulated lifetime risks.
Rahman, was the first to my knowledge in the United Kingdom, to understand the coded industry language of the G8 Summit; “the undercurrent that personalised medicine, involving sharing of drug trials data and possibly genomic information across jurisdictions, was pretty obvious to me.” I must admit that I was a little slower in this realisation, as it all returns to a most complicated subject: genomics. This is based on the assumption that disease can be personalised and unravelled and treated at a genetic level.” My view is that we need to be cautious in our approach to genomic science and particularly in the way we apportion financial resources. It would be a travesty if this commercial approach to care was actually at the cost of improving well-being, care and support.
The idea itself that there is a “pre-disease” stage before the full-blown course of the dementia of Alzheimer type is actually misleading. Mild cognitive impairment (“MCI”) is a clinical finding in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia. A meta-analysis of 41 good quality studies found that approximately 5-10% of people with MCI will progress to dementia after ten years of follow-up
This robust evidence is pivotal in considering our current approach to “early diagnostics” such as imaging or the use of computerized neuroscientific batteries. As somebody who supports innovation, I nevertheless urge caution.
“The debate on dementia can get pretty defeatist. Of course — the challenge is huge. And yes — we’re a long way from a cure. But there is hope. I see it in the extraordinary work of UK life sciences companies, like IXICO, Cambridge Cognition, Psychology Online and Proteome Sciences, working with others to develop new tests for Alzheimer’s Disease.”
Cambridge Cognition is a commercial company and describes itself as “the leading global provider of cognitive testing software, creating touchscreen tests that have revolutionised the assessment of cognitive function. Tap into the power of unmatched scientific expertise and the world’s leading computerised tests of cognition, powered by CANTABtechnology”. I have had longstanding interest in Cambridge Cognition given one of its products, CANTABmobile, has been piloted in my NHS Board area.
The best summary that I can give of CANTABmobile is as per my letter published in the British Medical journal in October 2013. The Editors of the BMJ, before publication “asked Cambridge Cognition for a reply to this letter but they declined to comment.”
CANTABmobile and its misleading promotion:
“I wrote to Cambridge Cognition outlining my concerns about the promotional claim. I asked for evidence that it was a “test for dementia” and whether the company envisaged any potential harms associated with this claim.112
CANTABmobile is a test of paired associates learning. This is useful for assessing patients with memory problems. In isolation it cannot diagnose dementia. After reading the literature provided, it is easy to conclude that used alone CANTABmobile is sensitive for “mild Alzheimer’s disease.” It is not made clear that only 5-10% of those who get an amber or a red light on this test will progress, over the next year, to dementia. The harm caused by overdiagnosis is ignored—this is particularly unbalanced when CANTABmobile has been promoted as useful for reassuring the worried well.
The reply from Cambridge Cognition stated: “We have also changed the wording on the website to clarify that CANTABmobile is a test of memory impairment, not dementia per se.” This was not before I saw patients referred to me based on the original claim.
I was sorry that Cambridge Cognition declined to give a reply to the British Medical Journal as this was an opportunity to clarify the scientific research that supports the claims they have promoted for their product.
IXICO as already mentioned is a commercial brain-imaging company established by Professor Derek Hill of UCL in 2004 and it has worked with “seven of the top fifteen pharmaceutical companies”. As a business it is now reaching into what they term the “third pillar” and that is the “rapid diagnosis” of dementia in the clinical setting.
Professor Burns has stated that “a wide variety of approaches to dementia from a number of stakeholders should be welcomed in my view”. Practising clinicians who follow evidence based medicine and who have an ethical duty to consider primum non nocere (above all first do no harm) should seek wider academic reviews, preferably systematic analysis, looking at sensitivities, specificities based on the outcomes of multiple trials of any technology. Science as outlined by Robert K Merton45 and Mary Midgley35 needs more than IXICO as a “stakeholder” to “educate” us.
I am aware that Derek Hill is to give a talk on “A rapid diagnostic system” to the Dementias 2014 Conference. This national conference is organised by Professor Tom Arie and Professor Alistair Burns. The programme for this conference outlines Derek Hill as “Professor of Medical Imaging Sciences, University College London.” There is no mention anywhere on this programme that Derek Hill is CEO of IXICO.
To close this section on recent policy on dementia in the United Kingdom it is my view that we should follow the principles of scientific pluralism and independence from vested interests. This can be done without impeding scientific innovation and development.
These are the words of Richard Taylor who has been diagnosed with Dementia of an Alzheimer’s type:
“Hello, I believe you have missed seeing the blinders of reasoning and evidence worn by those whose own self interest are driven by the needs and wants of many others, other than those they claim to serve. You cannot show them enough foot notes, enough good science, enough consensus science, in short enough reasoning and evidence to convince them the results of their focus groups as to what to say and how to say it in order to gain the greater good (more money, raised faster to cure/bench research) should not trump reasoning, evidence, and science. You cannot convince them that funding even one guess/one less promising lead/one less something before meaningfully addressing the needs of millions and millions of elder folks actually living with the disabilities associated with dementia44.”
CLOSE: The forgetfulness of others
It is time to close now. 2013 is now behind us and I am aware that a calendar year of dementia is more than a match for my recall and in truth relies on a community of minds. Here I want to thank a number of people and in particular to thank Professor Alistair Burns, National clinical Director for Dementia, for putting up with my questions and for always being polite in reply. I also want to thank Geoff Huggins for agreeing to meet with me to discuss dementia and other issues.
I want to thank Dr Martin Brunet and Dr Shibley Rahman for sharing their thoughts, writings and research over 2013. This has been most helpful as it has brought necessary wider breadth to my reflections.
Others that have helped on the journey: Dr Margaret McCartney; Dr John Cosgrove; Dr Chris Fox; Dr Ash Paul; Dr Jess Ballenger; Dr Iona Heath. Having been critical of the inappropriate use of metaphors, I do hope my use of “journey” does not show me as lost. I also want to thank my small community mental health team for sharing discussions in so many areas – we have learnt from each other but mostly from our elders who have shared their lifetime knowledge and experience. We have all benefited from this windfall.
I especially want to thank my wife Sian for her guidance, love and brilliance. Sian has put up with my need to try and help our elders even when I lost a few marbles some years back.
The title of this review will probably not make sense to you. Collectively we seem to have forgotten that memory loss in older age does occur, and more often than not, without ever progressing to dementia. This is the “forgetfulness of others” to which I refer.
I want to close with the reason why Dr Shibley Rahman wrote “Living well with dementia: the importance of the person and the environment for wellbeing” which is to be published in the UK on January 14th 2014:
“At the centre of this book is what an individual with dementia can do rather what they cannot do.”
 Burns et al. Re: A rallying call for an evidence based approach to dementia and related policy development. 21March 2013 http://www.bmj.com/content/345/bmj.e8588/rr/637358
 Dementias 2014: A national conference: A review and update on current developments in the dementias; in the fields of research, investigations, clinical care and service and policy issues http://www.mahealthcareevents.co.uk/cgi-bin/go.pl/conferences/detail.html?conference_uid=401
 Gordon, P.J. Letter: Proposed dementia screening: Confusion is everywhere. Published 30 January 2013 BMJ2013;346:f511
 Taylor, R. Personal reply by Richard Taylor to “Part I: The “epidemic” of metaphors” 2 Jan 2014 http://www.themythofalzheimers.com/blog/index.php/2014/01/02/dementia-the-epidemic-of-metaphors/
 Robert K. Merton, “Social Structure and Anomie”. American Sociological Review, 3 (October 1938): 672–82.
 Hunt, J. Keynote address as Secretary of state for Health to the Annual Conference of the Royal College of General Practitioners.3 Oct 2013
 Rahman, S. The “dementia prevalence calculator”: for a person to access a timely diagnosis, or for private markets to access the person?22 December 2013
 Matthews, F. E. et al. A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II. 6736, 4–11 (2013).
 Cartmell, N. Reply to Dr Peter J. Gordon on the “dementia prevalence calculator” 25 August 2013
 University of Cambridge. Programme includes research into dementia, healthy ageing and neuropsychiatric epidemiology. The research is multidisciplinary and the Cambridge team straddles the Department of Public Health and Primary Care and the MRC Biostatistics Unit (Led by Dr Fiona Matthews). http://www.phpc.cam.ac.uk/pi/professor-carol-brayne/
 Burns, A. In an e-mail to Dr Peter J. Gordon dated 17 December 2013 “Your views on industry have been made clear in a number of areas.”
 Brunet M. Target Diagnosis Rates – a New Mechanism for Overdiagnosis? (submitted but not yet published)
 Brunet, M et al. Open letter to the prime minister and chief medical officer for England: There is no evidence base for proposed dementia screening. Published 27 December 2012. BMJ2012;345:e8588
 Rasmussen, J & seventeen others. Re: Open Letter to The Prime Minister and the Chief Medical Officer Regarding Proposals to Introduce Screening for Dementia.14 Dec 2012 http://www.bmj.com/content/344/bmj.e2347/rr/620234
 Gordon, Peter J. FOI returns from all 22 NHS Scotland Boards on their “Hospitality Registers” https://holeousia.wordpress.com/category/medical-writings/pharmaceutical-industry-and-medical-education/nhs-hospitality-registers/
 Godlee, F. The BMJ’s stance on collaboration with industry.Published 29 October 2013. BMJ2013;347:f6467
 Chinthapalli, K. Reward doctors for early diagnosis of dementia, says think tank (The report, which was sponsored by the drug company LILLY) Published 17 Dec 2012 BMJ2012;345:e8533
 Gordon, P. J. “Truth telling and dementia”28 Apr 2013 http://www.bmj.com/content/345/bmj.e8588/rr/643043
 Alzheimer society web platform http://alzheimers.org.uk/?gclid=COb6j8ym4rsCFWmWtAod_H8AoQ
 Spence, D. From the Frontline. Bad medicine: dementia. Published 1 June 2012. BMJ2012;344:e3859
 Gordon, P.J. Timely debate.22 Jun 2012. http://www.bmj.com/content/344/bmj.e3859/rr/591064
 NICE guideline 42 (updated) and in Scotland SIGN 86 guideline
 Gordon, P. How we risk getting it wrong in cognitive screening too BMJ 2012; 344:e4043
 Frances, A. DSM5 Minor Neurocognitive Disorder. Psychol Today. 16 Feb 2012
 Alzheimer’s Disease International. World Alzheimer report 2011: The benefits of early diagnosis and intervention. 2011. http://www.alz.co.uk/research/WorldAlzheimerReport2011ExecutiveSummary.pdf.
 Ballenger, J. Blog: To Conquer Confusion. The Alzheimer’s Hockey Stick. 20 Jun 2012. http://conquerconfusion.wordpress.com/2012/06/20/the-alzheimers-hockey-s…
 Derek Hill of IXICO and UCL interviewed by Professor Alistair Burns: http://audioboo.fm/boos/1047653-derek-hill-of-ixico-and-ucl
 Farrell, L. Reply on twitter to Professor Alistair Burns. 21 April 2013.
 Burns, Alistair. Reply on twitter to Dr Liam Farrell.22 April 2013.
 Burns et al. Re: A rallying call for an evidence based approach to dementia and related policy development. 21March 2013 http://www.bmj.com/content/345/bmj.e8588/rr/637358
 Inquiry of the All-Party Parliamentary Group on Dementia. How to improve dementia diagnosis rates in the UK. Minutes of the oral evidence session held in Lords Committee Room 1 on 14 March 2012 Before members. Full Transcript as PDF Available on Alzheimer society website
 Unlocking Diagnosis, All-Party Parliamentary Group report. July 2012. House of Commons http://alzheimers.org.uk/site/scripts/download_info.php?fileID=1457
 ALCOVE: a European Joint Action on Alzheimer’s disease Professor Dawn Brooker UK Dementia Congress Conference 2013 Benchmarking against ALCOVE recommendations for timely diagnosis in dementia
 G8 dementia summit: https://www.gov.uk/government/news/g8-dementia-summit
 Gordon, P. J. and Gordon, S.F. Dementia Guidelines: research and clinical criteria are not simply “interchangeable” 9 Dec 2013. http://www.bmj.com/content/347/bmj.f7282/rr/676567
 Britton, Beth. http://www.bethbritton.com/index.htm A freelance campaigner and consultant, writer and blogger specialising in issues affecting older people, health and social care and specifically dementia.
 Rahman, S Why I wrote ‘Living well with dementia’21 Dec 2013.http://livingwelldementia.org/2013/12/21/living-well-with-dementia-author-synopsis/
 Rahman, S A binary choice between personalised medicine or person-centred care? We can’t go on like this.17 Dec 2013 http://livingwelldementia.org/2013/12/17/a-binary-choice-between-personalised-medicine-or-person-centred-care-we-cant-go-on-like-this/
 Rose, H. & Rose, Genes, Cells and Brains: Bioscience’s Promethean Promises of the new biology. Published 5 Nov 2012 by Verso Books
 Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.
 Mitchell, A.J., and Shiri-Feshki, M. (2009) Rate of progression of mild cognitive impairment to dementia -meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand, 119(4), pp. 252-65.
 On this Board some of the promotional material on CANTABmobile provided by the Commercial company CAMBRIDGE COGNITION. All available open-source on internet http://www.pinterest.com/peterjgordon/cambridge-cognition-and-cantabmobile/
 Material relating to CANTABmobile: letters, views, scientific reports and publications: https://holeousia.wordpress.com/category/medical-writings/dementia/cantabmobile/
 Gordon, P.J. Letter: CANTABmobile and its misleading promotion. Published 15 October 2013
 Strech D, Mertz M, Knüppel H, Neitzke G, Schmidhuber M. The full spectrum of ethical issues in dementia care: systematic qualitative review. Br J Psychiatry 2013;202:400-6.
 Burns, A. In response to specific questions about IXICO and CANTABmobile. On social media 22 Aug 2013
 Dementias 2014: A national conference: A review and update on current developments in the dementias; in the fields of research, investigations, clinical care and service and policy issues.,
 Gordon, P. J. I wrote an article called “Peter’s lost marbles” and then made it into a film. Donny Lyons, Old Age Psychiatrist and Chief Executive of the Mental Welfare Commission for Scotland: “Very much enjoyed the marbles story. Have you submitted it to “Old Age Psychiatrist”?” (2 Aug 2011)