At the creative heart of science is a spirit of open-minded enquiry. The history of my profession has revealed this to me alongside the realisation that if dementia is to be understood, then both numbers (that which is quantifiable) and words (the qualitative) should be understood as equal forms of measurement. It has thus concerned me that the words used when discussing dementia in our current culture have kept returning to metaphors in categories of loss. At least five categories of metaphors have emerged to describe dementia. The first category is that of MILITARY metaphors and this seems to be the most prevalent of all. The other four categories include: CRIMINAL metaphors; metaphors of CONTAGION; metaphors of OTHERNESS; and lastly, metaphors of MAPS.
The Scottish Government, in terms of dementia strategy, has routinely used military metaphors. Indeed the first “target” was HEAT Target 4 which set an explicit, financially incentivised target, for all NHS Boards to attain 61% “early diagnosis” of the Eurodem prevalence of dementia. This Target having been reached has since been hailed by the Scottish Government as demonstrating how the Scottish Government “have been doing quite well.” Geoff Huggins, Head of Mental Health for the Scottish Government who was invited to present evidence to the All Party Parliamentary Group, told Westminster that to improve dementia diagnosis rates for Scotland, this required “occasionally us taking one or two key clinicians or managers around the bike sheds and giving them a bit of encouragement” and “we [Scottish Government] have been quite careful to take out saboteurs4.”
Listening to the recent G8 Dementia Summit in London I struggled to count the number of times the word “fight” was used. The Alzheimer Society use the word ‘fight’ in day-to-day communication as it is a definitive part of their official logo. The word ‘fight’ was also included in the Dementia Challenge as given in the inaugural address by Prime Minister David Cameron. It would indeed be a “challenge” to find an image, about dementia, without “fight” appearing in the background of our Prime Minister. The military nature of the ‘dementia challenge’ was reinforced by David Cameron as he repeated that Britain must take an “all out fight-back” to deal with this dementia “explosion”. It was George Bernard Shaw who once remarked: “so many words repeated saying the same thing over and over again. That is, as you know, the way to drive the thing into the mind of the world” I addressed the use of such military metaphors for dementia in a published response to the British Medical Journal and also in a film (‘Fighting Talk’) which I presented to the Annual Conference of the Royal College of General Practitioners #RCGPAC in Harrogate in October 2013.
To play this short film please click here or on the image above.
I would argue that military metaphors, used to describe illness or disease, have, if not an overt, a subconscious impact on society. I would suggest that by applying such militarism to every individual living with dementia we risk identifying those living with cognitive changes as ‘losers’ or as those who have been ‘defeated’. In short this is the sort of language that risks heightening stigma. The irony is that in using such metaphors: the Alzheimer Society, the “Dementia Challenge,” and the G8 Dementia Summit risk exacerbating the “myths” that they so encourage science and humanity to address. It seems to me that this really is an approach to the WORLD that is spelled backwards and stigmatises our elders.
Along with the notion of those ‘defeated’ through ‘war’ comes the notion of “burden.” Such a notion is certainly neither meant nor explicit but it does seem to linger in the blurred lines between ageism and biological reductionism. It is important that you realise that it is the language used that may risk ageist overtones.
Ray Tallis was one of the first to explore the language used by the medical profession and then went on to consider this in the context of increased longevity. Tallis also reflected upon the common use of the word “challenge” when referring to our elders:
“[My] optimistic tone may provoke disbelief. Surely the longer people live, the more likely they will be ‘a burden’ or (more politely) ‘a challenge’ to themselves, to their friends and relatives who find themselves transformed into (willing or unwilling) carers, to medical and social services and to the economy as a whole? Do not old people cost money; time, effort, patience? Do we not read daily of the burden placed on society by old people.”
In addition to the use of military metaphors, it is not uncommon to hear metaphors of criminality being used to describe dementia’s effect upon the person. In his keynote address to the G8 Dementia Summit, Prime Minister, David Cameron said:
“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.”
I was not alone to share concerns about the language used by our Prime Minister. In a thoughtful piece in the Observer, Professor Ashcroft said:
“The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: “fight-back”, “stealing lives”, “explosion”, “shock”, “timebombs” and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.”
In another reflective commentary, Dr Bob Leckridge asked what our Prime Minister meant by “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 an object even. It’s a process. In fact, I wouldn’t even use the word “it” in relation to dementia (I don’t use “it” in relation to any disease). This is a process which is a process occurring within a human being, a human being who lives within multiple physical, cultural and social environments, a human being who cannot be understood in isolation. If we see dementia as an object we are going to have a hard job achieving sufficient understanding to make a difference.”
In the summer of last year, under the headline “Increasing Burden,” BBC Scotland covered a study by The Royal College of Physicians of Edinburgh (RCPE) which found that dementia was present in 25% of all in-patients. Alasdair MacLullich, professor of geriatric medicine at the Royal Infirmary of Edinburgh was quoted:
“Medical training must evolve in line with the evolving dementia epidemic to ensure that medical staff are trained in diagnosing, assessing and treating dementia.”
It was also around this time that I shared an interesting discussion with Neil Chadborn and Shibley Rahman about whether it was helpful, and whether it was scientifically valid, to refer to dementia in our ageing western society as an “epidemic”. My instinctive view was that it was not helpful. I have always considered epidemic to refer to infectious disease and that it implied a “contagious pathogen.” I was indeed concerned enough about this that I had written to Professor Alasdair MacLullich about the language he used in this BBC broadcast. My underlying concerns were three-fold: firstly, might the use of ‘epidemic’ to discuss dementia generate disproportional fear in society at large; secondly, might it simplify understanding that dementia is like a virus, that it is a one-cause disease, and can be mastered by science in the same way; and thirdly, might the use of epidemic encourage a sense of “otherness” in our elderly (those growing old) and thus unintentionally be a form of ageism?
It was Shibley Rahman who followed up our discussion with a most considered review of the extant literature: Does the epidemiology of dementia constitute an ‘epidemic’, and does it warrant a “moral panic”? This review started with the universally accepted definition of epidemic:
“The occurrence in a community or region of cases of an illness, specific health- related behaviour, or other health-related events clearly in excess of normal expectancy.”
Awareness campaigns have widely reported, and now reached most levels of society, that over the forthcoming decades, large numbers of people will enter the ages when the incidence rates of forms of dementia are the highest. People sixty years and over make up the most rapidly expanding segment of the population: in 2000, there were over 600 million persons aged 60 years or over worldwide, comprising just over 10% of the world population, and, by 2050 it is estimated that this figure will have tripled to nearly two billion older persons, comprising 22% of the world population.
The definition of epidemic makes it clear that prevalence should be in “excess of normal expectancy.” In a recent paper Prof Paradis at Stanford University argues that there has been an ‘epidemic of epidemics‘, with no apparent restriction on the type of disease, on frequency or rates of affliction. Prof Paradis generally found that here was no growth or contagion threshold.
Neil Chadborn expressed a salutary warning as provided by research into the communication of obesity as a public health issue. Neil commented that the very fast increase in mass media attention to obesity in the United States of America seems to have many of the elements of what social scientists call a ‘moral panic’. Furthermore, Neil raised the potential consequences at society level, for making misplaced comparisons (or analogies) between completely different medical or physiological conditions. Sociologists talk of ‘moral panic’ where society has a tendency to exaggerate statistics and to create a ‘bogey-man’, known as a ‘folk-devil’. In recent years moral panic encouraged by media presentation have covered a wide-ranging number of topics from HIV/AIDS in the 1980s to immigrants into the UK in the 2000’s. Interestingly at the recent G8 Dementia Summit, Prime Minister David Cameron said in his keynote address:
“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 13.”
It is absolutely correct that dementia is not an inevitable part of ageing. However it is equally correct that ageing has a stronger correlation with cognitive function than any other factor. There are hundreds of risk factors, and probably more, for cognitive changes in our brains and the majority of these risk factors relate to our lifetime experiences and exposures. The most robust risk however relates to ageing as it accumulates these risk factors (here, I must make clear I do not include early-onset progressive dementias). From a philosophical perspective it has long occurred to me the perils of completely dividing our ageing selves (and in this case brains) from disease. It is here that harmful simplistic notions can set in: notions that ignore the complex reality and notions that may unintentionally stigmatise and even disadvantage our most old elderly. In a recent Editorial in the British Medical Journal, Jeroen Spijker and John MacInnes argued that current measures of population ageing are misleading and that “the numbers of dependent older people in the UK and other countries have actually been falling in recent years.”
We must also consider that this difficulty in “drawing the line” is not confined to dementia. Whilst psychiatry is bedevilled by this issue generally there are also huge difficulties with classification boundaries within general medicine. For example in a “major revision to treatment goals”, an expert panel has concluded that older hypertensive patients, those aged 60 years or older, should be treated to a blood pressure target of less than 150/90 mm Hg, rather than 140/90 mm Hg as recommended in previous guidelines.
It is my view here, as a historian, who has observed the medical profession and policy makers see-saw between ageing and disease, that we must not stifle discussion and that we must include public health doctors and ethicists in this. These are the words of Iona Heath in a letter to the British Medical Journal about “stage III kidney disease:”
“Coresh and colleagues write that “the attitude that disease in older people should be ignored and untreated is disturbing.” …. the authors persist in confusing risk with disease…A low estimated glomerular filtration rate and albuminuria are not diseases in themselves but risk factors for future problems. Describing people with risk factors as having a disease is unhelpful and demoralising to these people.”
In a recent analysis published in the British Medical journal, which was part of the series “Too much Medicine” Professor Le Couteur and colleagues cited concerns about current United Kingdom policy in the early diagnosis of cognitive problems. The article, which was entitled “Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis” generated considerable response which covered a range of views. One of the replies was by Professor Alistair Burns, National Clinical Director for Dementia in England & Wales and included support from fifty-one others including clinical professors, academics, nurses, charity leads and individuals living with dementia:
“[Le Couteur et al] attempt to repudiate three decades of dementia research and clinical practice. It completely misses the main aims of the current political approach and is in danger of being an affront to the millions of people with dementia and their families, who are suffering with this devastating illness, and undoing much of the good done over recent years.”
This response by Burns et al concerned me as it completely misjudged what this analysis was about, which was not about dementia but the inherent possibility of overdiagnosis in the prevailing drive for earlier and earlier diagnosis.
There was one reply to Le Couteur et al that stood out for me and is worth quoting. It was by the surgeon, Professor Basil Jide Fadipe, of Dominica:
“The subject of neurocognitive disorder is something off my street but that of overdiagnosis is everybody’s. I did read Le Couteur and found the paper very informative and persuasive with a reasonable balance of evidence as its basis. Diagnosis is one thing; overdiagnosis another. Le Couteur was about the latter.
When brain scans and bio markers get into the diagnostic armamentaria in sub-clinical neurocognitive disorders, the risk also begins to mount of overdiagnosis given that either of these diagnostic tools will (must) have some false positives. Until their sensitivities, specificities and predictive rates are properly defined, some cases will find themselves within falsely suggestive brackets, the consequence for which will be un-employability, un-insurability, and an artefactual depersonalization with regards to self cognizance on legal matters.
To under-diagnose or encourage delayed diagnosis is clearly not to be advised (and Le Couteur’s article didn’t come across as doing that) but to encourage overdiagnosis through excessive elastification of diagnostic or inclusive criteria could be just as harmful; in the least, it swells the ranks of people who once so included in the brackets of neurocognitive insufficiency become stigmatized.”
Reading this reply by Professor Fadipe my thoughts returned to a round-table discussion on the timely diagnosis of dementia held in London to which I could not be invited as I was employed by NHS Scotland and this was a meeting for NHS England. The minutes of this round-table discussion were most helpful but, from my perspective, disappointingly light on ethical considerations. At the meeting entitled “Integrating perspectives; achieving consensus” Professor Sube Banerjee pointed out that “transforming toxic uncertainty into empowered understanding was a goal27.” I am interested in ethics, and particularly the ethics of risk, and my concern with this statement and the use of the word “toxic” is that it presents risk to health as a battle that only one-side can win. As a key opinion leader in dementia I have great respect for Professor Banerjee but this approach to risk is surely not helpful. To demonstrate the reductionist and harmful fallacy of this, one could, as a thought experiment, turn Professor Banerjee’s statement into its binary opposite: “toxic certainty.”
One recent piece of research illustrates that knowledge is not always empowering. A study published in the American Journal of Psychiatry in October 2013 on the effect of knowledge of APOE genotype on subjective and objective memory performance in healthy older adults concluded that informing older adults that they have an APOE genotype associated with an increased risk of Alzheimer’s disease can have adverse consequences on their perception of their memory abilities and their performance on objective memory tests.
Whilst I share the overall view presented by Le Couteur et al there was one sub-heading that they used that did concern me: “The curse of a diagnosis.” Here I would suggest the concerns I had with Prof Banerjee’s “toxic” language hold just as valid. It is my view that the language used by my profession and by those who shape policy and public opinion really does matter. I considered a potential consequence of such language in a paper that I had published in the Journal of Mental Health and Social Inclusion.
“Underlying all forms of discrimination, including psychiatric stigmatisation, is an exaggerated attribution of ‘other-ness’ to certain individuals or groups. Here there is an assumption (made by the discriminator) of the existence of fundamental differences between himself and ‘the other’. Considering this, perhaps we have a seemingly insoluble problem as classifications of ‘disorders’ immediately labels us into some or other category of ‘otherness.’
The medical model has a tendency to examine the world through a microscope where light is artificial, and where any such illumination is confined to the pathological. [in terms of cognitive changes] … my concern here is very real and is based on highly replicable research findings that have repeatedly shown that a cohort, far greater than half, do not progress from early memory loss to clinical dementia. To consider early intervention properly requires a social, ethical and philosophical perspective. Conflating “early memory loss” (a common finding in elderly folk), “early Alzheimer’s disease” (a pathological diagnosis which cannot yet be reliably detected pre-mortem) and “early dementia” (which is what we are really looking for) leaves our profession at risk of the pitfalls which have beset other “early interventions”.
I am convinced the diagnostic lens is a stigmatiser in itself. In such a view the doctor (and the wider world) ceases to see the whole person, and can too easily be distracted from what else is going on outside any label. This, in itself, limits understanding. I certainly think that being conscious of the power of diagnosis and of the labelling process might contribute to a wiser use of diagnoses. Angermeyer et al concluded in a recent systematic meta-analysis “[that at] this stage, promulgating biogenetic causal models of mental illness cannot be regarded as a rational, evidence-based strategy to decrease individual discrimination against people with mental illness, but rather entails a risk of increasing stigma.”
I have urged medical professionals to consider their own attitudes and to become aware of them, to involve service users in the development of services, and to stand up against discrimination.
Mapping metaphors have become very common in medicine generally and probably seem entirely innocuous: such as “journey,” “sign-posting,” “summit” etc. Certainly, as metaphors go, I have far less difficulty with them when applied to human well-being and I fully agree that we all “journey” through life.
Like the philosopher Mary Midgley I have always been fascinated by maps. In chapter four of her book “The Myths we live by” Midgley considers maps and asks at outset “why is the fascination of this reductive linear pattern still so strong? ”
My first introduction to “dementia mapping” was the TESCO sponsored map included with a letter from the Scottish Government. This followed the progress of HEAT target 4 which closed on 31st March 2011, and was a target set to increase the rate of “early diagnosis of dementia”. The figure was based on a 1991 study of prevalence of dementia across Europe (Eurodem study) and compared current rates of diagnosis in Scotland based on prevalences reported through QOF. All Boards were required to attain a target of 61% of the Eurodem prevalence for their population. The letter from the Scottish Government on the success of this target began “we are delighted to draw your attention to a recent publication by the Alzheimer Society that highlights comparative dementia diagnosis rates across the UK by health area at March 2011. The following diagram highlights this performance visually35.” Scotland was coloured green and England and Wales red (see below).
You would have thought that I would have welcomed this success. However I shall try and explain why this congratulation hides some less welcome outcomes.
There is evidence that, as well as supporting improvement, target-driven activities can have, in themselves, a range of unhelpful unintended consequences. With the “case-finding” approach of HEAT target 4, and the mapping of this, harms did indeed emerge. The mapping was a one-dimensional approach based on an estimated prevalence. It appeared to me that the map was more important than the person and that the need to hit the target was the primary concern. This kind of target has no room for ethical considerations. I wrote twice to the Scottish Government about my concerns but never had a written reply. As a result I spent a considerable amount of time carefully looking at evidence and ethics in the area of early diagnosis of dementia. I came to the conclusion that a timely approach to diagnosis would be a preferable and less harmful approach.
A further unintended consequence of HEAT target 4 was a re-direction of managerial time and resources to meet these targets. This maybe one of the reasons why frontline healthcare workers have felt an ever-greater disconnect from managerial levels that no longer have much of a role in day-to-day services.
Researchers have reported a range of potential harmful consequences of target-driven approaches and a summary of this evidence was documented in “Intelligent Kindness: Reforming the culture of healthcare”:
tunnel vision — concentration on areas that are included in the performance indicator scheme, to the exclusion of other important areas
suboptimisation — the pursuit of narrow local objectives by managers, at the expense of the objectives of the organisation as a whole
myopia — concentration on short-term issues, to the exclusion of long-term criteria that may show up in performance measures only in many years’ time
measure fixation — focusing on what is measured rather than the outcomes intended
complacency — a lack of motivation for improvement when comparative performance is deemed adequate
ossification — referring to the organisational paralysis that can arise from an excessively rigid system of measurement
misrepresentation — the deliberate manipulation of data, including ‘creative’ accounting and fraud, so that reported behaviour differs from actual behaviour.
gaming – altering behaviour so as to obtain strategic advantage.
Returning to maps that have been coloured by targets based on assumed prevalences of dementia, I suggest we consider the need for “scientific pluralism” as outlined by the philosopher Mary Midgley:
“The main need is that this initial map should be comprehensive – should say something about all the main factors that may be encountered34.” p38
This analogy between different maps and different sources of knowledge seems to me very useful. If you pause to consider how many different maps we might have for a landscape: a topographical map, a soil map, a climate map, a vegetation map, a road map, a historical map (of any period), a geological map, a temperature map, a built-space map, a river map etc etc It occurs to me that a map of estimated prevalences of dementia lacks scientific pluralism and that all the potential unforeseen consequences outlined in “Intelligent Kindness” may unfortunately apply:
“Different specialists may be talking about quite different rivers. These clashes are often worth investigating and they can lead to important illuminations. But they never mean that one of these specialties is always right and the rest are superficial or mistaken34.” p39
“We can eventually make quite a lot of sense of this habitat if we patiently put together the data from different angles. But if we insist that our own map is the only one worth following, we shall not get very far34.” p40
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