PART II: Dementia: who is in the “driving seat”?

INTRODUCTION:
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?

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(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[1].”

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”.[2]

For me, the best ‘drivers’ of 2013 have especially been those with lived experience of dementia. Richard Taylor[3] 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?[4]” 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[5].

“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[6].

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[7]. 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.

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(2) ON THE MAP
The mapping approach taken by the Scottish Government to case-finding has since been adopted by the Department of Health[8] – 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[9]. Jeremy Hunt, Secretary for Health, has now come to the same conclusion.[10] It is interesting then that Jeremy Hunt has referred to the same General practitioners as “laggards” when it comes to their approach to dementia.[11]

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[12]” 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.[13]”

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[14]. 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[15].”

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.”

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(3) CART or HORSE
It is the research currently being undertaken by Professor Carol Brayne[16] 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.

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(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.[17]

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[18].

“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[19].”

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[20] and elicited a critical response from a group of eighteen signatories[21]. 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[22]. 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[23]^{,[24],[25],[26],[27]}

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[28].

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(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.”

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[29]. 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[30]“ and then two weeks later gave his frontline opinion, on dementia diagnosis[31]. 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[32]:

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[33]. Many other illnesses have seen this gradual mission creep[34]. The risk is that we ensnare a fearful populace: those of our elderly who may never progress to dementia[35]. 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[36].

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’[37].

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[38]. Dr Liam Farrell replied to this tweet by Professor Alistair Burns, stating rather bluntly: “more BS about early dx of dementia[39]”. Professor Burns replied: “thanks good to know someone out there actually reads my stuff. Pleasure … I presumed BS meant ‘best sense’.[40]”

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[41].” 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.[42]

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.”[43]

The recent conclusion from the European ALCOVE project, with 19 participating countries was that a diagnosis of dementia should be timely[44].

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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[63].

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.