My reply to Tripathi and Kumar

I thank Assistant Professor Tripathi and Dr Kumar for their reply. (1) I do prescribe the “anti-dementia” drugs, explaining to my patients that this is because they may produce mild symptomatic improvements in the short term. We may argue about definitions, but to me this is not “improving outcomes”.

After judicial review in 2010 it was confirmed that National Institute for Health and Care Excellence (NICE) “was not irrational in concluding that there is no cumulative benefit to patients after 6 months treatment with these drugs”. (2)

NICE review June 2010

The Alzheimer’s Society has much more recently stated through its Dementia Ambassador Fiona Phillips that “current treatments only help with symptoms for a short while”. (3)

The point of my letter was to highlight the difference between what evidence shows and what the “prevailing view” can be and also how this can shift in a short period of time.


(1) Tripathi, S & Kumar, A. “Anti-dementia” drugs improve the outcome. 15 July 2014.

(2) Outcome of judicial review for NICE guidance on drugs for Alzheimer’s disease. 24 June 2010.

(3) Alzheimer Society film: Dementia Ambassador, Fiona Phillips. 14 Jan 2014

Reply by Tripathi and Kumar

This is the BMJ rapid-response reply by Assistant Professor Shailendra Mohan Tripathi Ambrish Kumar, Department of Geriatric Mental Health, King George’s Medical University, Lucknow, India. It is dated 15th April 2014.

“Anti-dementia” drugs improve the outcome
The author has been very judgmental in reaching a conclusion that anti-dementia drugs neither modify the disease nor improve the outcome. I differ on his statement that anti-dementia drug do not improve the outcome. It is true that anti-dementia drugs do not stop the progression of the disease but the statement regarding non-improvement in outcome is a little harsh. It is clear that there remains no medical or pharmacological treatment for dementia especially Alzheimer’s disease that can reverse or stop the progression of the disease. Anti-dementia drugs, particularly the cholinesterase inhibitors for people with mild to moderate Alzheimer’s disease and memantine for people with moderate to severe Alzheimer’s disease, are intended for symptom management to help improve cognition, function, behaviour, language and quality of life. Even combination of the two can be tried with very beneficial effect. By working with Geriatric patients I have come to know that symptomatic improvement can be brought in patients with Alzheimer’s dementia. This may not be that beneficial for other kind of dementias.

Improvement in patients with dementia is based on many factors. Recent studies have investigated whether specific domains of cognitive or non-cognitive symptoms respond to different treatments. An analysis of three mild to moderate Alzheimer studies showed that memantine had particular benefits in domains of orientation, following commands, praxis and comprehension (Mecocci et al., 2009). Gauthier et al. in 2008 found non-cognitive benefits for delusions, agitation/aggression and irritability through anti-dementia drugs. At the same time it was found that cholinesterase inhibitors can help behavioural symptoms by improving attention and concentration. Feldman et al. (2001) showed particular benefits for apathy, anxiety and depression.

Judicious use of antidementia drugs is required by an expert. Doses, best time to start of antidementia drugs are important which can be addressed only with experience. A patient must be free from delirium, his physical problems should be properly taken care of otherwise the patient will be at receiving end of adverse after effects of the antidementia medications. A patient on antidementia drugs would be managed better by the care giver than the patient off the antidementia drug. Clinically there is definite improvement with antidementia drugs on activies of daily living and behavior which is not possible without improvement in cognition.

1. Gauthier S, Loft H and Cummings J (2008) Improvement in behavioural symptoms in patients with moderate to severe Alzheimer’s disease by memantine: a pooled data analysis. Int J GeriatrPsychiatry 23: 537–545.
2. Mecocci P, Bladstro¨m A and Stender K (2009) Effects of memantine on cognition in patients with moderate to severe Alzheimer’s disease: post-hoc analyses of ADAS-cog and SIB total and single-item scores from six randomized, double-blind, placebo controlled studies. Int J Geriatr Psychiatry 24: 532–538.
3. Feldman H, Gauthier S, Hecker J, Vellas B, Subbiah P and Whalen E (2001) A 24-week, randomized, double-blind study of donepezil in moderate to severe Alzheimer’s disease. Neurology 57: 613–620.

My reply, submitted as a BMJ rapid response is here

Delirium Screening

Some people have asked me to try and summarise my considerations on delirium assessment. In what follows I will also try and outline an alternative approach to the one currently being recommended across Scotland following Healthcare Improvement Scotland (HIS) Inspection visits.

1. DETECTION: I have been asked the entirely understandable question as to what approach I would advocate for detection of delirium if we were to depart from the Healthcare Improvement Scotland (HIS) mandate to screen all those 65 or over for “cognitive impairment”. Here, I shall try to make clear that my principle concern is with screening rather than with the brief rating scales themselves. These scales have a place, even if not yet fully validated. However, in my view, and that of NICE, they should be used for clarification, and for on-going assessment, of those who are determined - by professional nursing and medical assessment (including routine history and examination and collateral history) – of being at risk. It was in this sense, the patient-centred sense, that I used the word “holistic”. I apologise that I was not clearer about this in my lengthy piece, “the faltering, unfaltering steps”.

I use the word “holistic” in the general sense: time-honoured professionalism of person-centred nursing and medical care. This is the “professional excellence” that I am certain that we all support and wish to improve. I would like nurses and doctors to have training in delirium, and so provide a reasonable level of such care, ahead of deciding if a rating scale for triage is necessary. I am not aware that any RCT study has been done to compare: (1) current standard approach (which evidence demonstrates fails to detect 50-70% of delirium), with (2) brief screening tests, with (3) improved staffing levels, improved staff time and education (education, that the likes of HIS are undertaking) on delirium and cognitive disturbance?

2. THE 4AT SCREENING TEST: I was recently provided with two papers on the 4AT screening test which I now have had the chance to read closely. I had not intended commenting specifically on any one screening test as there are many that are currently being studied in the acute hospital setting. However, I thought it would be helpful to look at this study published in the journal of Age and Ageing by Bellelli et al: “Validation of the 4AT, a new instrument for rapid delirium screening: a study in 234 hospitalised older people” as it highlights some of the considerations I raised in my blog. I would suggest that the other paper, set specifically in a Stroke Unit is less generalisable in terms of HIS Improvement work, so I will make no further comment on it.

My view, in terms of being an evidence basis for Improvement Work in Scotland, that the title of this paper may be misleading. The Bellelli study only considered rapid delirium screening” whereas the 4AT test also “screens” for “cognitive impairment”. As the 4AT screening test is used for both we can only, at best, state that it has been validated for the former.

One of the four main features, following brevity of the test, is that “no special training is required”. In the Bellelli study the 4AT assessments were “performed by experienced physicians, though no specific training in the 4AT was given. Further research is needed to assess the ease of use of 4AT among other professional groups of varying levels of seniority.” Furthermore the Bellelli study “did not assess inter-rater reliability for the 4AT or the reference standard assessment” or the “clinical outcomes in relation to ‘possible delirium’ as assessed by the 4AT.” The Bellelli study was not set in A& E or hospital front-door settings. Additionally, as stated in the paper “because of insufficient power, we were not able to analyse the characteristics of misclassified (false negative and false positive) patients.” Thus we do need to be cautious in generalising the findings of this “validation” study.

I retain the view that we must also measure metrics such as patient/clinician acceptability before we can be confident for general application of any test.

The Bellelli paper concludes “future studies in larger populations and other centres should further assess its performance, including the determination of whether detection of delirium using the 4ATmay improve the clinical outcomes of patients.”

3. DEMENTIA and DELIRIUM: Screening for cognitive impairment. This has yet to be validated for the 4AT. As you may know I have concern about the delayed diagnosis of dementia. However I am also concerned about the potential for wrong diagnosis. Here, in the acute setting we have an almost intractable problem that I wonder if the 4AT can address. We will need to wait for further studies. However the incorporated AMT4 test for cognitive screening is one of the most basic (some would say “reductionist”) tests available to clinicians. How it then performs when one has delirium has not yet, to my satisfaction, been established. The Scottish Government have confirmed in a letter of response to Anne Begg, MP, that “there are no plans at present to introduce such a national screening programme for Scotland.”

I have noted that the use of screening tests (AMT4, CAM or 4AT) is being measured in many Scottish health Boards in terms of each Board’s “compliance”.

I must confirm that I have no issue with rating scales. Some are better than others. I use them all the time, to the best of my ability, in an evidenced-based way. However if used for screening or “case-finding” – though I note that Scottish Delirium Association (SDA), Older People in Acute Care (OPAC) and Healthcare Improvement Scotland (HIS) generally refer to “screening” – most public health experts would recommend that they need to be very carefully considered (as per the ten Wilson & Jungner World Health Organisation criteria). Please note the clear definitions of screening by the World Health Organisation and that this does not need to be whole (entire) population.

4. TIME: Taking delirium seriously should involve taking appropriate time. I am certain that we all agree on this. We also know the reality of staffing resources. Should we not be spelling out this shortfall to Scottish Government as part of improvement recommendations?

The point I was making in my blog was that, for improvement work like this, we need to engage beyond clinicians and improvement staff. I know that HIS have fully engaged with those who have experienced delirium. I suggest that we also need to give all those over 65 an opportunity to give their considerations. There are of course many others, in professional disciplines across medicine and beyond acute care, who may wish to have an input. I also wonder if the Mental Welfare Commission may have a view of starting out with a screening test without any perceived need (as per HIS recommendations) for individual consent?

6. ETHICS. There are unforeseen consequences of tests that are about the person, being, sentience rather than a unitary bodily process (I have reasoned many times why taking a pulse, for example, has quite different implications to that of cognitive testing.)

One unforeseen consequence of wider cognitive screening is the heightening of fear, as expressed clearly by Dr Iona Heath (Past President RCGP) and John Sawkins (VOX). It is possible our elders may become even more fearful of hospital if they understand that they will be cognitively tested whether they agree or not. Just today it was reported that a woman who was turned down by ATOS for benefits – as based on a screening questionnaire – then took her own life. The Mental Welfare Commission have investigated this and in the report express concerns about a short-cut approach to overall and proper understanding of this woman’s medical history and life situation. This is a most extreme example but we must consider the wider effects of screening however well intentioned and reasoned by the clinical argument. For those who want to learn more I would thoroughly recommend that you might read The patient paradox by Margaret McCartney.

7. INVERSE CARE: With any screening programme there is a potential risk of unintentionally precipitating inverse care. Since mandatory screening was introduced following HIS inspection, referrals to the older adults’ liaison service in my Health Board area have risen to 230 per month and the majority of these individuals are referred on for further community assessment. The community services are already stretched. The risks are that community services may struggle to meet the need of those who need it most and that those with mild cognitive impairment are wrongly medicalsised as suffering from dementia.

8. PEER REVIEW: A recent correspondent asked that I submit my considerations for peer review in formal academic journal. It is my view that those behind improvement work on delirium in Scotland need to do this first and I am of the view that this might be an important element of improvement work before policy recommendations are embarked upon. The Clinical Standards, on which screening recommendations for delirium have been based, are 12 years old. The involvement of Healthcare Improvement Scotland in pilot work, as guided by the Scottish Delirium Association is most welcome. The limitations of other avenues of communication about this improvement work have been pointed out to me. Yet we must acknowledge that OPAC, HIS and SDA are using other avenues extensively (tweets, blogs and videos), thereby inviting responses.

To conclude, I have no major issue with the use of validated scales as a form of assessment. However I agree with NICE that evidence, and wider consideration is currently not there to support use for screening or case-finding. Yet this has become the basis of Healthcare Improvement Scotland recommendations, recommendations that have been made with the guiding support of the Scottish Delirium Association.

One and the same

In this short film I will explain to you why I have come to understand that case-finding and screening are actually one and the same.

One and the same from omphalos on Vimeo.

All around us national clinical leads and disease champions argue that early detection policies are exercises in ethical case-finding. They insist that such policies are not screening. This is important because criteria have been set for the introduction of any national “screening” programme. It appears that by calling any programme “case-finding”, these criteria can be ignored.

In this film I will briefly look at the historical development of case-finding and screening. This provides clear evidence that these terms have been consistently used one and the same. This film will argue, along with Dr James Maxwell Glover Wilson, that the ten principles that are considered necessary by the World Health Organisation for screening, should also apply to case-finding. One and the same.

As an approach, case-finding emerged in the first few years of the 1930’s: “to designate the pre-clinical stage of a tuberculous pulmonary infiltration, when it is demonstrable by x-ray examination but does not yet manifest itself clinically by symptoms or signs perceptible to the patient or by the usual methods of classical physical examination.”

The success of this case-finding approach led to its use for detection of other diseases. By 1968 the World Health Organisation had listed ten requirements necessary for the introduction of a public health screening programme. Note that this list refers to case-finding. Screening and case-finding are one and the same.

  1. The condition sought should be an important health problem.
  2. There should be an accepted treatment for patients with recognized disease.
  3. Facilities for diagnosis and treatment should be available.
  4. There should be a recognizable latent or early symptomatic stage.
  5. There should be a suitable test or examination.
  6. The test should be acceptable to the population.
  7. The natural history of the condition, including development from latent to declared disease, should be adequately understood.
  8. There should be an agreed policy on whom to treat as patients.
  9. The cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole.
  10. Case-finding should be a continuing process and not a ‘once and for all’ project.

Into the next decade and case-finding moved into many other areas.

In 1970 diabetes was considered as one area that might benefit:
“Many are truly asymptomatic, even on direct questioning. Despite this, diagnosis of the diabetes is not usually difficult, for random or post-glucose blood sugar levels are sufficiently high to allow of no doubt. Nevertheless, when screening by blood sugar level is employed for case finding, diagnosis becomes more problematic.”

As the 1970’s progressed case-finding of hypertension became a priority.

Hypertension in general practice
21 April 1984
“SIR, I support Dr John Coope’s comments on the lamentable state of management of patients with hypertension, benefits can be achieved from treatment. The practical answer surely lies in case finding.”

Into the 1980s and case-finding methods are underway to detect dementia:
Do general practitioners miss dementia in elderly patients?
Oct 1988

Some of the difficulties of this were discussed at this time and reveal that the Wilson & Junger principles for screening were considered necessary:

“We have made some progress with the problem of assessing mild dementia. However, there are as yet no widely accepted criteria for mild dementia, nor are there any clinically useful biological markers. Consequently, whether normal ageing, benign senescent forgetfulness and mild dementia lie on a continuum, or whether mild dementia is categorically distinct, is uncertain.

Thus, prospective longitudinal studies using a range of reasonably standardised diagnostic criteria are imperative, as they may show which of the existing criteria most effectively distinguish those cases which progress from those which remain stable.”

Those who know me and my writings will realise that it was with the early diagnosis of dementia where my interest first started in case-finding and screening, one and the same thing. It was clear to me that early diagnosis of dementia could not just side-step the ten principles as established by the World Health Organisation. However it took the support of doctors like Dr McCartney, Heath, Brunet and Cosgrove (the Grassroot doctors) to reason why a timely approach to the diagnosis of dementia would be a better, and less harmful approach than case-finding or screening, one and the same.

The UK National Screening Committee have been approached by policy advisors to tabulate similarities and differences between screening and case-finding. Having looked at these carefully it is clear to me that the majority of differences are in fact interpretational and demonstrate that case-finding has been, in recent years, wrongly separated from screening. The main cost of this is that the ten principles need not to be followed.

For example with screening one is generally invited and formal information of benefits and harms are shared. This generally does not happen with case-finding.

For example with screening there is generally formal quality assurance whilst with case-finding this is generally not so.

Time to finish but first let me dispel a myth. It has been argued that for case-finding one has already “symptoms” but with screening generally one does not. This is a false divide. Symptoms are not all or nothing and may or may not be experienced. Dr Wilson and Jungner made no distinction here and the World Health Organisation agreed.

Screening and case-finding are one and the same thing.

The faltering, unfaltering steps

INTRODUCTION: “Sensitive to the faltering steps of age”[1]
In what follows I will attempt to explore many of the issues around the experience of confusion in those people 65 years or older (most scientific journals refer to this age group as “elderly people”) admitted to acute hospitals. In the medical world this is now generally termed delirium. Delirium is an acute disorder of attention and cognition that is common, serious, costly, under-recognised, and often fatal. This is therefore a most serious matter. Yet the issues surrounding delirium are many and complex and far more difficult than this simple one word term may first suggest.

And slowly we go down.  And slowly we go down.
And slowly we go up. And slowly we go up.
The faltering, unfaltering steps[2]


With delirium, I think all involved would agree that we are at the starting steps of understanding. The title of this essay – The faltering, unfaltering steps – comes from a poem by Scotland’s Machar, Edwin Morgan.2 I deliberately chose this as the title as it occurred to me that it reminds us that scientific understanding generally comes in steps that may need to be climbed up or down, and generally many times, before the best understanding is reached. The title, for me also suggests that our “elderly” should not be collectively understood for their “faltering”.


Before I move on to explain today’s understandings and approaches to delirium, I should point out that apart from Edwin Morgan, I include one other Literary giant to highlight the not so simply medico-biological considerations that I would argue should be part of our understanding of delirium. That other writer is Gabriel García Márquez and the work of his that I will cite is Love in the time of cholera. Whilst I am not at all like the character Florentino Ariza in this novel, I do share his sensitivity.1


I have separated what follows into three steps. Of course there are many more than three but I am trying to avoid faltering.

In the INTRODUCTION I will try to cover what is today meant by delirium and why this is a condition that vitally matters to us all.

  1. In the first section – “SIMPLY” COMPLEX – (the first step) I shall explore current approaches to delirium assessment.
  2. In the second section – THE ETHICAL MANAGEMENT OF FORGETFULNESS – I will outline what I think may be missing in current approach to delirium: namely considerations of consent and the determination to screen all those admitted to hospital who are 65 years or over.
  3. In the third section – WHAT IS REQUIRED NOW – (for now the last step) I borrow the words of Robert Francis QC61 to offer some personal considerations as to how we may further improve the assessment and care of those in hospital who may be confused and thus most vulnerable.

What is Delirium?
Delirium (sometimes called ‘acute confusional state’) is a common clinical syndrome characterised by disturbed consciousness, cognitive function or perception, which has an acute onset and fluctuating course. It is a serious condition that is associated with poor outcomes. However, it can be prevented and treated if dealt with urgently.5

Although a single factor can lead to delirium, usually delirium is multi-factorial in elderly people. The multi-factorial model of the cause of delirium has been well validated and widely accepted[3]

Why focus on delirium? [4]
Older people and people with dementia, severe illness or injury such as a hip fracture are more at risk of delirium. The prevalence of delirium in people on medical wards in hospital is about 20% to 30%, and 10% to 50% of people having surgery develop delirium. Reporting of delirium is poor in the United Kingdom, indicating that awareness and reporting procedures need to be improved.

People who develop delirium may: need to stay longer in hospital or in critical care; have an increased incidence of dementia; have more hospital-acquired complications, such as falls and pressure sores; be more likely to need to be admitted to long-term care if they are in hospital; be more likely to die.[5]

“Because patients discharged home from the emergency department with unidentified delirium have 6-month mortality rates almost 3-fold greater than their counterparts in whom delirium is detected, unrecognized delirium in the acute care setting presents a major health challenge to older adults.”[6]

Delirium and Improvement work (in Scotland)
In 2011, the Cabinet Secretary for Health and Wellbeing announced that Healthcare Improvement Scotland would carry out a programme of inspections to provide assurance that the care of older people in acute hospitals is of a high standard. In launching the programme of work, the Cabinet Secretary said:

“Quality, compassionate care for older people that protects their dignity and independence, is one of the most sacred duties of any civilised society. It is something I believe we generally do well – but that is not good enough. We must do it well for every older person on every occasion, in care homes and in hospitals.”[7]

Inspections began early in 2012 and by the end of this month (March 2014) Healthcare Improvement Scotland will have carried out 18 announced and 6 unannounced inspections. Healthcare Improvement Scotland was asked to carry out these inspections because of its experience inspecting acute hospitals throughout NHS Scotland. The aim of these inspections was to provide assurance that the care of older people in acute hospitals was of a high standard and to encourage improvement where it was needed. The Inspection process (see later) includes a number of equally important areas, but for the purpose of this paper, I am concentrating on the following:

  • that the Inspection process would “put the patient first” and would “focus on ensuring older people are treated with the respect, compassion, dignity and care that they deserve”[8]
  • dementia and cognitive impairment

Healthcare Improvement Scotland states explicitly that as an NHS organisation that it is committed to equality:” We have assessed the inspection function for likely impact on equality protected characteristics as defined by age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation (Equality Act 2010).”[9]

(1) “Simply” complex
“It’s a complex issue” Penny Bond, Team Leader, Acute Hospital Inspections (Healthcare Improvement Scotland)[10]

As Professor Alistair MacLullich has described, for delirium we have all struggled with what he terms “terminological chaos” in that we have, across the United Kingdom, and indeed world-wide, many clinical expressions used as alternative ways of recording delirium (see table 1 below). Professor MacLullich is absolutely correct that this condition is ill-defined” and that this is “confusing.” Across Europe and the United States of   America, consensus has grown that such a range of terminologies is not helpful and thus why Professor MacLullich has suggested most strongly that it is “best to use the term delirium” [11]


“acute confusional state” “toxic psychosis”
“a bit muddled” “acute brain failure”
“acute confusion” “ICU psychosis”
“not themselves today” “Organic brain syndrome”
“connfusion” “a bit knocked off”
“post-operative psychosis” “cerebral insufficiency’“
“agitation” “vague”
“metabolic encephalopathy” “acute befuddlement”
“non-compliance with examination” “poor historian”

In Love in the time of cholera, Lorenzo Daza, states that “the only thing worse than bad health is a bad name.”1  I have to admit that I am not sure what the best term is for acute confusion, perhaps because it is such a complex and variable condition. I do though agree that we need to avoid loose language regarding a most serious condition/state of being. In Love in the time of cholera the word delirium is used in a context entirely outwith the medical frame: p69, “delirious with joy”; p104, “delirious with hope”; p298 “deliriums of passion”1 I am fully of the appreciation that medical delirium is a very serious state that can cause much suffering. It can often contribute to death. I raise other contextual and cultural understandings of the word delirium to remind us that this is a wide-ranging mental state (for all its seriousness) that we have struggled to define. It is important to remember that delirium, even in its medical form, is a clinical presentation with a multiplicity of potential causes, not a disease in its own right. The high mortality associated with delirium is a consequence of multiple factors including both ageing and disease.

The use of the words delirium throughout Love in the time of cholera no doubt reflects an underlying theme that the novel explores: that emotion, circumstances, life factors in a diverse yet individual way can mimic a medical condition in their presentation. In the case of this book, that emotion was of course the pain and the confusion of love that Florentino Ariza had for Fermina Daza.

“. . . and his mother was terrified because his condition did not resemble the turmoil of love so much as the devastation of cholera”1  

(a) The tools of their tools[12]
The title of this section is from a quotation by the writer and philosopher Henry David Thorea who suggested that “Men have become the tools of their tools.”

As a practising NHS psychiatrist for older adults I use rating scales every working day and I generally find them a useful way of contributing to my overall approach which seeks to be as holistic as possible. However, in using rating scales I have come to the scientific and philosophical conclusion that rating scales have limitations and that some rating scales are more scientifically valid than others.

In this section (part a) I shall briefly explore rating scales for delirium as currently being recommended in delirium assessments in Scotland’s acute hospitals. In the section that follows (part b) I shall then consider the current policy that makes use of these tests for mandatory screening of every adult 65 years and over to NHS acute care.

The 4AT test is a “new screening tool for delirium and cognitive impairment”, authored by Prof Alasdair MacLullich, Dr Tracy Ryan and Dr Helen Cash of the University of Edinburgh and NHS Lothian.[13] This test incorporates the AMT4, “a validated very brief screening tool for general cognitive impairment.”14 The 4AT test benefits from (1) “brevity” (the authors state that it takes less than 2 minutes to complete), and (2) “that no special training required” and finally (3) that it “incorporates general cognitive screening”.14

The authors of the 4AT test confirm that this screening test “underwent several waves of piloting before reaching the form it is in now” and that “formal validation studies are in progress”.13 However I remain uncertain whether the aim of this test is the detection of delirium, or of cognitive impairment.

At the end of last year, one of the nurses in the community team of which I am a part handed over to me the Journal of Mental Health Nursing and suggested that I read an article by Grant King who is a lecturer in mental health nursing with the University of Dundee. In this paper Grant King described a personal experience which made him consider a professional situation in a new way.16   In Grant’s paper he described his experience of writing about the MMSE[14] (a rating scale of cognitive function that is now copyright) as an undergraduate student and then witnessing his father being tested with this by a healthcare worker (in this case a doctor)

Grant King begins his paper thus16:

“An axe can be a wonderful tool. It can be used for many activities but is probably best known through history and across the globe as a tool for felling trees and chopping wood. The wood, in turn, can be used to sustain life with a hearty fire providing essential heat and light.”

“Indeed, an axe can be a wonderful tool. An axe can also be a terrible weapon.”

The paper then goes on to give the narrative of his father’s experience of being tested with the MMSE and the thoughts and emotions that this stirred in his father and for Grant. At the end of this real-world account, Grant confirmed “Though it may not seem like it, I have no issue with the use and utility of the Mini Mental State Examination.”16

Grant then confirmed what he was really trying to get across16:

“I just want to publicly remember that these clinical tools, as ‘useful’ as they may be ‘to better inform care planning’ are potentially so powerful in changing lives and families that the hands that handle their haft need to be well trained and skilled in their wielding.”

Grant’s experience of his father being tested with the MMSE, left him reflectively wondering16:

  • “Do we ever really take enough time to genuinely reflect on the potential ramifications of even supposedly routine tests upon our clients and their families?”
  • “Can we fully appreciate the widest impact of our interventions until we encounter them at close proximity from the other side?”
  • As mental health nurses let us be mindful of the power in our hands, and the sensitivity and compassion required, as we wield the tools of our trade.”[15]

The following words are those of Consultant Geriatrician, Dr Graham Ellis, who is working with Healthcare Improvement Scotland on improving care in acute hospitals (here he is talking about the “frailty triage screening tool”) but the words seem to be equally applicable to the other flagship improvement, mandatory cognitive screening for all those 65 or over who enter acute hospitals in Scotland:

“The sooner we are able to identify at the front door of the hospital at the very point that they arrive at the hospital we need some simple measure, some simple tool that identifies that this patient needs to be handled differently. . . the whole drive of the improvement work is to identify a simple way, a simple tool something that will capture that as early as possible and as consistently as possible”[16]

It occurs to me, and I will return to this in more detail later, that this is a big ask of a “simple” tool that is to “screen” and then “triage” our older generation. The risk is that time-honoured holistic nursing and medical assessments are replaced by brief, un-validated screening tests and that, as a consequence, “treating people with dignity and respect”9  may actually be less likely to happen for our elders at a time of great vulnerability.

(b) On the edge[17]
I sometimes wonder, and I speak here most generally, that our respected elders, the older generations of society, are left on the edge of involvement in decisions that will affect them and that are being determined by policy makers who tend to be in the middle period of their life. In establishing policies that will affect our elders we need to remember that they have experience that we, the policy makers, do not have.

In the NHS area that I work the local policy for screening for delirium is that it is currently “mandatory”[18] for all those 65 years and over admitted to the acute hospital to be screened with the AMT4 test[19]  and/or CAM test[20].


Healthcare Improvement Scotland has recently published Identification and Immediate Management of Delirium, version 2.[21] As I am not involved with this improvement work, I have been faltering in my understanding of this initiative. I am not clear on at least the following questions: which age ranges are these interventions aimed at and are they for testing or national implementation?

However we can be absolutely clear what Healthcare Improvement Scotland have recommended to specific NHS Boards following inspection visits to their acute hospitals:

For Raigmore Hospital, Inverness:
“We found that further improvement is required in the following areas. There is no routine screening for cognitive impairment taking place when older patients are admitted to hospital.”[22]

For St John’s Hospital, Livingstone:
“We found that further improvement is required in the following areas. Screening for cognitive impairment was not routinely carried out in patients over 65 years when they were admitted to hospital.”[23]

Western Isles Hospital, Stornoway:
“There is no routine screening for cognitive impairment taking place when older patients are admitted to hospital.”[24]

I was made aware of the report of Healthcare Improvement Scotland’s Inspection of Forth Valley Royal Hospital (FVRH) by reading the positive comments by Professor Angela Wallace, Director of Nursing, NHS Forth Valley:

We welcome this report which highlights many areas of good practice in the acute hospital care provided to older people in NHS Forth Valley.

It recognises our commitment to maintain the dignity of patients and ensure they are cared for with compassion and respect. Inspectors also commented on the warm, caring and meaningful way which our staff interact with patients and the strong leadership provided by senior nurses in our wards.

Independent feedback from patients about the care and help they received while in hospital was also very positive.

Work is already underway to address the report recommendations and we expect these to be completed within the next few months.”[25]

I then took the opportunity of reading the full Inspection Report.[26] Having read this report, I wrote to the Chief Inspector, Ian Smith to say:

“It was most encouraging to see the areas of strength as noted by your inspection team when visiting NHS Forth Valley in relation to the care provided to older people in acute hospitals. It was especially welcome to note that the inspection team found ‘warm, caring and meaningful interactions between staff and patients.’”28

In my letter to Healthcare Improvement Scotland I also shared the basis of my concern:

“In your summary of your visit Healthcare Improvement Scotland recommended that further improvement was required in ‘screening for cognitive impairment’ that ‘was not consistently carried out in patients over 65 years when admitted to hospital’.”[27]

My letter continued:

“As a Consultant in Old Age Psychiatry I have always believed that our elderly are particularly vulnerable in hospital and that impaired cognition can add to this. The approach to this matter is important and should, I would argue, follow the principles of good medical and nursing practice which has a fundamental basis in holistic assessment. Isolated ‘screening tests’ such as the mandatory use of the AMT4 test for all those 65 or over in Forth Valley Royal Hospital take away from holistic professionalism and risk creating an artificial assessment that does not reflect the true overall presentation.”

“If we are talking about ‘screening tests’ it is important we follow the systematic evidence-base and ethical analysis of the impact of isolated tests. As far as I know has no such meta-analysis evidence basis and what little research has been done on this test shows it lacks in both specificity and sensitivity. This is actually true for a number of the tests currently being recommended in a pathway by the Scottish Delirium Association and I strongly believe that they should not be used in isolation.”

“I am reminded of the recent controversy over the Liverpool Care Pathway[28]. No one had any argument with the aims behind this, nor the elements within it. However, when it was applied inappropriately on a background of inadequate training and understanding, and with poor communication with families, patients undoubtedly suffered. This is why I believe a professional holistic assessment is so important.”

I concluded my letter to Healthcare Improvement Scotland asking if they might give some consideration and comments of the points that I had raised.

I later phoned them and had a phone discussion with Ian Smith, Senior Inspector. Following our conversation, I asked Ian Smith if could confirm what we had shared in our discussion in writing:

“Our discussion regarding the use of screening/assessment for cognitive impairment was an interesting one, however, as we discussed we are very much guided by the Older People in Acute Standards (2002), which state that those patients over 65 years should be screened for cognitive impairment.”[29] Ian Smith, Senior Inspector, went on to confirm that he was “not qualified to be able to comment on the merits of cognitive screening and evidence surrounding it. As such, I have copied this letter to Healthcare Improvement Scotland’s Medical Director, Dr Brian Robson who might be better able to discuss these issues with you.”30

Following this a teleconference was arranged between myself and three staff of Healthcare Improvement Scotland, including Dr Brian Robson. It was clear to me from the outset that my genuine questions about the evidence behind the improvement work led by Healthcare Improvement Scotland were not welcome. It appeared that the “Inspectors” did themselves not like any scrutiny of their national recommendations for acute care of our elders. Dr Robson sent a letter that followed up the teleconference:

“Inspection of Older People’s service and use of ‘Screening Tools’
The Clinical Standards for Older People in Acute Care (2002) are the extant standards and are the basis of our current inspection process. These standards are scheduled to be reviewed in 2014. Within that review there will be consideration of the evidence base for assessing patients for cognitive impairment and indeed the evidence base and best practice around ‘screening tools’ if that is relevant.”[30]

I replied to this letter, as follows:

“I am writing to re-confirm that my view is that mandatory cognitive screening for those 65 or over has neither a scientific nor ethical basis (whatever the setting of such screening). I am fully aware that HIS follow the Guidance of the 2002 Care Standards.”[31]

As Dr Robson confirmed, the Clinical Standards for Older People in Acute Care were published in 2002 and are now 12 years old. These standards were most clearly enshrined with the following principles

• are evidence-based and have been developed and finalised in consultation with many people across Scotland

• regularly reviewed and revised to make sure they remain relevant and up-to-date.[32]

These standards also confirmed an “overarching principle that there should be no discrimination on the basis of age, but that specific needs at different stages of life need to be recognised” and went on to state that “for this reason, they did not seek to identify a specific age group, but instead emphasises the need for appropriate and individual multidisciplinary assessment and care.”35

On the homepage film for Healthcare Improvement Scotland, Brian Robson states 18

“Healthcare Improvement Scotland works with clinicians who are working with patients every single day. What we do is help those clinicians work with us across all areas …. Such as working on our improvement work in hospitals. It’s about making sure clinicians are involved across the full range of activities of Healthcare Improvement Scotland[33]

“We’ve been listening to the voices of clinicians and healthcare professionals like you. We understand that you want to be at the very heart of healthcare improvement and not at the edges.”18

In his letter to me Dr Robson, Executive Clinical Director for Healthcare Improvement Scotland stated: “You set out your enthusiasm to be personally involved in the design and governance of the national programme and referenced our commitment in our Clinical Engagement Strategy to involve clinicians in our work. I attempted to emphasise that this commitment does not confer an individual’s ‘right’ to be included in such groups.”33  He referred me back to local mechanisms of engagement.

The Francis Enquiry concluded that NHS culture was struggling to allow voices of concern to come forward and that improvement culture needs to take great care not to exclude or isolate staff or voices who express concerns about patient care.  The Medical Director for NHS Forth Valley, Dr Peter Murdoch has undertaken consultations across the organisation in reviewing the Francis Enquiry Report and came to the conclusion that “local context and action was essential”[34] but that NHS Forth Valley “were already beginning to see things changing.”[35]

What is required now

(click anywhere on the picture above to play film)

Just last week, NHS Forth Valley had a “Delirium and Dementia Study Day” with involvement from Healthcare Improvement Scotland amongst others. Unfortunately I had not been personally made aware of, or invited to, this Study Day. I expressed my disappointment as this had not been the first instance of such “forgetfulness” on the part of the organisers.[36]

Healthcare Improvement Scotland has a rhetoric of engagement but this has not been my experience. I wrote to the Cabinet Secretary for Health and Wellbeing about this and the short reply, on his behalf, was as follows:

“Mr Neil is aware that you have also raised these issues directly with Healthcare Improvement Scotland and thanks you for your continued interest in these matters.”[37]

(2) “The ethical management of forgetfulness”[38]

(a) Consent
“Obtaining consent should be an ethical duty first and foremost, one central to respecting the autonomy and dignity of patients”[39]

Informed consent is crucial for patients but it is not truly informed unless they are given full, reliable, evidence based information about the treatment alternatives and the likely benefits, harms, and uncertainties of each of these. Obviously, in the case of cognitive screening there are potential difficulties here in that a patient’s capacity to consent may be impaired.

It is my view that ethically we have a duty to respect individual autonomy, and no screening, even for cognitive impairment, should over-ride this human right. Even in our belief in a procedure’s value, or out of a concern not to worry the patient unduly, we cannot side-step asking for consent.43

The issue for us—the crucial one around older people, in particular—is the culture of care.”[40] Dr Denise Coia

Availability of time in casualty departments for example may be another barrier to seeking consent for testing. “Hurry is the devil,” wrote William Osler. In my biased view rushing consent (or establishing that consent may not be possible) should be avoided in the same way that a medical procedure should not be rushed.  On this, Leon Eisenberg has offered his thoughts:

“… we can change this mindset and view obtaining consent as an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients, then we will have taken a major step .… we must take the time to demonstrate to our students how the information the patient needs to have can be presented clearly and more than once, in order that the doctor can support the patient’s right to choose among alternatives.”[41] Leon Eisenberg

When Healthcare Improvement Scotland gave evidence to the Health Committee last winter, Drew Smith (Glasgow) (Lab) opened with the comment below. Respect and dignity can be considered in so many ways, but here I wonder if Drew Smith is expressing, what sometimes seems to me as the prevailing view, that cognitive testing is a necessary requirement for both respect and dignity:

“When HIS was in Glasgow last year and examined Glasgow royal infirmary, its report said that there was a consistent failure to respect the dignity of older people. Two examples of that are the failure to assess for cognitive impairment and dementia, and specific instances of, for example, people being showered in cubicles without screens, which I think Dr Coia would describe as being ‘unforgivable’ or ‘unacceptable’.”44

Here is a different take on this:
“It confuses me why signed consent for minor surgical interventions yet often not for things with devastating consequences”[42]

The NICE guideline on Delirium starts with person-centred care[43]
“Treatment and care should take into account people’s needs and preferences. People with delirium or at risk of delirium should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If patients do not have the capacity to make decisions, healthcare professionals should follow the relevant national guidance on this”47


(click anywhere on the picture above to play film)

(b) Screening
Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or a condition. Many screening programmes aim to reduce death from a disease by early detection. Screening has important ethical differences from clinical practice as it targets apparently healthy people. However, there are risks involved and screening cannot guarantee protection against a disease or condition. In any screening programme, there are false negatives (wrongly reported as not having the condition) and false positive results (wrongly reported as having the condition.)

Screening assessment tool: The examination of people without symptoms to detect unsuspected disease or problems.”[44]

In the 2002 Care Standards, upon which Healthcare Improvement Scotland base their inspection visits, in section 2a, it states that for “older people being treated in A&E or admitted – even briefly – for care are assessed for cognitive impairment, functional problems and existing home support” and that it is “essential” that a “brief screening assessment tool is in use and documents cognition.”[45] It also states, in Standard 8that all patients are enabled to be partners in making decisions about their own care and the extent of patient involvement in making decisions about their care is regularly and systematically monitored to ensure its effectiveness”[46]

Healthcare Improvement Scotland have confirmed that the approach that they take to screening, follows, in addition the 2002 Care Standards “we will develop national standards and/or indicators for NHSScotland that reflect UK National Screening Committee standards for new and existing programmes.”[47]

I have had previous, most helpful discussions with the UK National Screening Committee (UKNSC) regarding the Dementia DES in NHS England. I therefore wrote to Dr Hugh Davis to ask about their involvement with Healthcare Improvement Scotland:

“Thanks for your enquiry regarding Healthcare Improvement Scotland’s planning to undertake cognitive screening. I must admit I haven’t heard of such a plan for screening up in Scotland.  I wonder if you have any documents or resources that you could send or point me in the direction of that detail Healthcare Improvement Scotland’s plans so that I can understand more about the exact nature of what they’re planning on introducing?”[48]

The current position based on Inspection visits to nearly all Scotland’s Acute Hospitals, is reflected in this recent minute by Healthcare Improvement Scotland “In five hospitals inspected, we found that older people were not always being screened for cognitive impairment on admission to hospital. In the sixth hospital, where we carried out a follow-up inspection, we identified an improvement in the number of patients being screened for cognitive impairment.”[49]

It is important to note here that the NICE Guideline on Delirium (there is no SIGN Guideline equivalent) does NOT advocate screening. In fact the word screening never appears once in the whole document.

Professor Alistair MacLullich, Secretary of the Scottish Delirium Association, in a film on improvement work that has just been posted on HIS website states: “Healthcare Improvement Scotland have greatly accelerated the process through encouraging the use of standardised measures such as the 4AT and I think very importantly they are engaging with various health boards and practitioners to see which methods work so this is an evolving process. The fact is that even though we have had a lot of tools available for delirium detection it hasn’t really been implemented anywhere in the world until very recently. The crucial difference is that we are engaging with clinicians and practitioners in their organisations the best way of dealing with this.”[50]

“…. the product of the collaboration between the SDA and other interested clinicians and HIS and we are now seeing the results in terms of very positive reactions from all the different test sites from the clinicians who are using the tools right the way up to the Chief Executives.”55

The 4AT test13 is “a new screening tool for delirium and cognitive impairment” and can be “administered by any healthcare professional without the need for training.”


[2] AMT4 – Age, date of birth, place (name of the hospital or building), current year.

[3] ATTENTION - Ask the patient: “Please tell me the months of the year in backwards order, starting at December.”


Professor Emma Reynish, Chair of the British Geriatrics Society Dementia and Similar Disorders, advocates mandatory cognitive screening “It is vital that all older people admitted to hospital receive an assessment of their memory function as part of a holistic evaluation of their needs so that they can be managed and treated appropriately. Professor Reynish also states that “Assessment [with screening tools such as the 4AT] also leads to the identification of people with dementia. This is an essential part of how we can improve dementia diagnosis rates.” [51]

“Furthermore, assessment of memory identifies all individuals with cognitive impairment (whether this is delirium, known dementia, or symptoms of dementia but no diagnosis) so that individual care plans in acute hospitals can be designed to meet people’s specific needs. This leads to better communication, nutrition and orientation and makes it easier for health professionals to work in partnership with a patient’s caregivers.”56

John Sawkins, wrote to me with important thoughts that Professor Reynish has not considered:
“As a concerned citizen who reached the age of 65 in September 2013, I must confess that I am alarmed by the decision to routinely screen all those aged 65 and above for cognitive impairment and delirium. How much distress and fear do you think this engenders in a section of the population already wary of the euthanasia agenda, as well as the widely publicised abuses of the ‘Liverpool Care Pathway’? How on Earth can this approach fit in with the maxim, ‘Nothing about me without me’?”

John Sawkins continued: “The A4T test, freely downloadable and available to be administered by virtually any professional could have serious unintended consequences for the patient upon whom it is used: the surrender of one’s driving licence, for a start. But, as I clearly observed at a recent gathering to look at the impact of welfare changes on services, despite advocating partnership working and consultation with the service-user, professionals still retain the view that they, and they alone, know what is in the best interests of the patient.”

Professor MacLullich confirms that the 4AT screening tool he developed is a “screening instrument designed for rapid and sensitive initial assessment of cognitive impairment and delirium.”58 This being one of the tools advocated for mandatory screening in all Scottish Acute Hospitals by Healthcare Improvement Scotland. Yet the Clinical Executive Director for Healthcare Improvement Scotland stated in his letter to me that improvement work was based on “early identification and appropriate management of delirium. It is not focussed on the diagnosis of dementia.”33 As a result of one of the recent pilots in an Orthopaedic ward, one of the recommendations being made is that given “challenges with CAMthat screening should “move to the 4AT”[52]

A recently published meta-analysis by LaMantia et al has looked at screening tools for confusion in A & E settings. The study concluded that “despite there being a need to identify delirium in A & E geriatric patients, there are no validated instruments and there is a paucity of data on this topic.”6

Specifically on the CAM test which is a mandatory test for all patients over 65 admitted to NHS Forth valley, the LaMantia study concludes: “a variety of tools have been used to identify delirium among older adults in A & E research studies, though to date only one, the CAM, has undergone initial validation, albeit in relatively small study populations and in studies that did not strictly follow the Standards for the Reporting of Diagnostic Accuracy criteria.”6

Ultimately the LaMantia meta-analysis concludes that the best approach, based on current evidence, is that “patients who are at high risk of poor outcomes from the sequelae of delirium should be targeted for study within research” 6 This is the same conclusion as in the NICE Guidelines on delirium and quite different from the mandatory screening that is a key part of the Healthcare Improvement Scotland recommendations.

The Scottish Delirium Association was formed in 2012. It is formed by a group of healthcare workers, all practising doctors and nurses in care for the elderly. There does not appear to be any wider representation such as public health, ethics, or indeed any of our elder citizens themselves.

The Scottish Delirium Association have developed two pathways for delirium; (1) the Delirium Management Summary Pathway, and (2) the Comprehensive Delirium Pathway. These pathways aim to address the lack of understanding on severity delirium, the variability in approach to clinical management, the Low rates of detection and the adverse outcomes of delirium. These are goals that we would all surely support. However I am less confident than the Chair of the Scottish Delirium Association that we have sufficient evidence that these “pathways improves all” these vital areas.[53]And we certainly do not know if there may be unintended consequences of pathways that ignore consent and that place reductionist screening tests before any holistic assessment or even assessment of risk. With any screening test there is risk of false-positive and false-negative results.

A recent view expressed on social media: “Mandatory scares me, especially when the quality of that screening could be very questionable.”[54]

Whilst Healthcare Improvement Scotland have not waited for fully validated and ethically considered studies to implement mandatory cognitive screening, those 65 and over will have to wait as Healthcare Improvement Scotland have confirmed that “our revised inspection methodology is due to be published shortly.” 53

With cognitive screening we are very much dealing with the person, sentience, being and who we are. This, in my view cannot be considered as the equivalent of “routine” examinations such as taking pulse or blood-pressure. Though even for these we should be seeking consent and not simply taking assent as granted.

To conclude, I would prefer that cognitive testing is not mandatory and used when there is clinical suspicion of delirium following a careful and holistic assessment by healthcare staff trained in medicine for the elderly.

I am not alone in this view. Here is what Dr Iona Heath suggests:
“Once again let’s go for civil disobedience – I shall refuse to be screened!!”[55]

(3) “What is required now”[56]
Robert Francis QC, when addressing the summary conclusions of his report on the failings of Mid-Staffordshre NHS Foundation Trust, began “what is required now.”[57] In this concluding section I will offer some considerations on practical and ethical ways forward in seeking to improve the holistic approach to the care of our elders more generally.

(a) Hole Ousia[58]
As a writer I have collected my thoughts here in my “blog” called Hole Ousia.63 This Ancient Greek expression translates approximately as “whole being”. My view is that at the heart of a liberal education is the notion that human beings need to return to science that is more broad in its inclusion this is an idea which ought to unite scientists, literary intellectuals and artists alike.

Healthcare Improvement Scotland is a developing organisation that has such well-intentioned aims that they could surely only be welcomed across our nation. However it is a small organisation which is aware of the difficulties that it faces in being responsible for such high national ideals. This is why the Executive Clinical Director is rightly so passionate about seeking wider engagement with healthcare staff (and I hope also) patients.

This is described by Dr Brian Robson Executive Clinical Director of Healthcare Improvement Scotland when giving evidence to the Scottish Parliament last year:

“We have a small core clinical team in the organisation with a chief pharmacist, a chief nurse, midwife and allied health professional and a consultant in public health medicine and me. Our engagement strategy means that we bring in national clinical leads from the service experts in their field to work with us. At any one time, 20 or 30 of those will be working with us each session to help us to support our improvement programmes. Beyond that, we have access to thousands of clinical staff across the NHS in Scotland and the United Kingdom as well as internationally, to help us with our work. We do not have a large employed clinical staff, but clinical staff and clinical assurance run across all the programmes.”44  

Robbie Pearson Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland “However, what is fundamental is not the raw numbers but the skills, experience, capability and competence that we bring to our inspection work. Again, that emphasises the importance of the additional expertise that we may bring in from the service. As Dr Robson mentioned earlier in the context of our clinical engagement strategy, we need to consider how we can use the breadth of experience, skills and expertise that are out there to support us in our work as a relatively small organisation.”44

You will recall that we have been told that the improvement work undertaken by Healthcare Improvement Scotland, followed the guidance of the Clinical Standards for Acute Care35. It is interesting then, at Parliament last year, Ian Smith, Senior Inspector, Healthcare Improvement Scotland, stated that “for the inspections of acute care services for older people, we had no baseline from which to work because the inspections were new.”44

Duncan McNeil (Lab) the Convener of the Parliamentary Health Committee followed up this statement by Senior Inspector Ian Smith and asked Healthcare Improvement Scotland: “I understand that a review of the methodology of inspections is going on. When the committee reported on its inquiry into regulation of care of older people, we recommended that there be a review of the national care standards for older people, which were then 10 years old. How is that review progressing and what is your role in it? When can we expect to see the fruits of your work and that of the Scottish Government, which accepted our recommendation?”44

Dr Coia, Chair of Healthcare Improvement Scotland, offered a detailed response, but the Convener was still uncertain and so perhaps a little bluntly asked again: “has the review process begun formally?”44

Dr Coia replied “it has not yet begun.”44

This parliamentary committee met last year, and since then a review, chaired by Pam Whittle, CBE, has been published. This report is entitled National standards, guidance and best practice. As used as basis for Inspections and it was published in November 2013. [59]

The Whittle Report sets out that “the following national standards, guidance and best practice are used to underpin the inspection of the care provided to older people in acute care.”8  This includes 10 separate guidance documents (see table 2). I have read carefully the Whittle Report and I think it is important to confirm what this report does not actually make clear. This being that there has yet been no further update on the 2002 Clinical Standards for Older People in Acute Care which still form the basis for the national standards for inspection of acute care for older adults in Scotland.

It is worth noting that the Whittle Report does not mention NICE Clinical Guideline 103: Delirium.5 It should also be noted that the Whittle Report confirms that SIGN Guideline 86 – Management of Patients with Dementia is one of the guidelines it follows. This guideline, by SIGN’s own timetable, is now four years out of date and has recently been rated in a meta-analysis of 12 National Guidelines on dementia as the second poorest in terms of ethical considerations.[60] I published on-line in the BMJ a letter where I considered the possible reasons why ethical matters were generally not part of SIGN guidelines on dementia: “this appears to confirm an imbalance between the consideration of bio-medical aspects of dementia and those which focus on more general aspects of care. Just because the latter are harder to measure does not make them any less important.”[61]

Table 2; The Whittle recommendations are “underpinned” by the following:

  1. Adults with Incapacity (Scotland) Act 2000 Part 5 – Medical treatment and research
  2. Best Practice Statement for Prevention and Management of Pressure Ulcers (NHS Quality Improvement Scotland, March 2009)
  3. Clinical Standards for Food, Fluid and Nutritional Care in Hospitals (NHS Quality Improvement Scotland, September 2003)
  4. Dementia: decisions for dignity (Mental Welfare Commission, March 2011)
  5. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Integrated Adult Policy – Decision Making and Communication (Scottish Government, May 2010)
  6. Health Department Letter (HDL) (2007)13: Delivery Framework for Adult Rehabilitation – Prevention of Falls in Older People (Scottish Executive, February 2007)
  7. National Standards for Clinical Governance and Risk Management (NHS Quality Improvement Scotland, October 2005)
  8. Scottish Intercollegiate Guideline Network (SIGN) Guideline 86 – Management of Patients with Dementia (SIGN, February 2006)
  9. SIGN Guideline 111 – Management of Hip Fracture in Older People (SIGN, June 2009)
  10. Standards of Care for Dementia in Scotland (Scottish Government, June 2011)

As confirmed already the Clinical Standards for Acute Care35 are now twelve years old despite the enshrined promise that they would be “regularly reviewed and revised to make sure they remain relevant and up-to-date.”35  I am also of the understanding that these 12 year old Clinical Standards were not as broadly inclusive as is suggested: “have been developed and finalised in consultation with many people across Scotland.”35 The membership of the Older People in Acute Care Project Group, the group that determined the final Clinical Standards for Acute Care had only one patient representative, no consultant in psychiatry, no academic neuroscientist, no clinical ethicists, no involvement with medical humanities, no carers. Critical thinking for critical matters that critically may at sometime involve most of our elders requires width rather than narrowness.

My concern, exemplified in this piece of writing about delirium experienced in acute care is that that “improvement” and “assessment” are being undertaken by the same organisational body. Let me summarise this as best I can: Healthcare Improvement Scotland comes along to you as a clinician and tells you that they are “testing” intervention X which, they tell you, they think is going to improve patient care. They then come back to assess how well you are doing this. Are you going to risk failing your assessment by telling them that intervention X is poor? The risk here is of self-fulfilling prophecies.

Robbie Pearson, Director of Scrutiny and Assurance, continued for Healthcare Improvement Scotland, confirmed this with the Scottish Parliament:

“The crucial thing is that the NHS board owns and values the inspection improvement plans and that the NHS board demonstrates, within the board’s governance system, that it is making progress.”44 Mr Pearson then goes on to confirm that Healthcare Improvement Scotland “are not a regulatory body with enforcement powers, but we have significant powers under the Public Services Reform (Scotland) Act 2010 that allow us to carry out our duties.”44

Dr Denise Coia, Chair of Healthcare Improvement Scotland, was equally clear on this:
“… what is important is not only the reaction of health boards to our findings but what they do about them. Our organisation is unique in that no other—apart from one, I think, in the Netherlands—provides both a scrutiny and an improvement function44

Dr Coia also outlines the vital need for NHS Health Boards to demonstrate that they have acted on the recommendations made by Healthcare Improvement Scotland following inspections of acute services for older people:

“We can also refer beyond that to the Scottish Government’s performance management unit and to the director-general in our sponsor division in the Scottish Government. From there, the issue can be escalated up to a minister, so there are ultimate sanctions. Scotland is a very small country and you can go up that ladder fairly quickly if you need to.”44

This is why the basis of inspections needs to be evidenced-based, ethically considered and more broadly inclusive. Without such, despite the intention, person-centred care, respect and dignity for the individual in hospital may not have been properly considered.

For a small organisation like Healthcare Improvement Scotland, an organisation that is in its infancy, it is entirely understandable why it cannot cover all matters of healthcare from community to hospital (or vice-versa). The risk however is that improvement work focuses on specific areas and that these lose sight of necessary hole-ousia (the wider journey and the real life and circumstances of the unwell person). In trying to provide the most holistic understanding and care perhaps we may always falter but we should be aware of our falterings and never give up on this.

In evidence to the Scottish Parliament, Healthcare Improvement Scotland was asked by the Health Committee about their role in community services and how this informed approaches to acute care recommendations. Dr Denise Coia, Chair of Healthcare Improvement Scotland, stated that “…. when pathways of care get blocked because there are not enough community services and we find that acute hospitals are managing patients who would probably be more appropriately managed in the community, we might say that the care is inappropriate at that point and we need to do something about it …”44

One member of the Health Committee, Gil Paterson, SNP, asked more about this:
“If, in your expert opinion, some of what is going wrong may be due to funding and may be causing a lack of resource at the coalface, would you put that in your report? Would that see the light of day? Would it get into the public domain in some way if you thought that that was genuinely a problem, as with Southern Cross? Would we get to know about such issues through your work?”44

Robbie Pearson, Director of Scrutiny and Assurance, answered this on behalf of Healthcare Improvement Scotland stating that “I do not believe that that is our role”44

The Deputy Convener of the Health Committee, Bob Doris, SNP then commented “Do you have to wait for the integration of health and social care bill to do that?”44

Considering time-honoured holistic assessment, Bob Doris, Deputy Convener, went on to ask another most important question: “Is any assessment done of older people’s general mental health?”44

Dr Coia answered on behalf of Healthcare Improvement Scotland. It is a reply, I must be honest, that has caused me concern: “I will answer that because I am a psychiatrist by background. We talk about “dementia and cognitive impairment” because many older people who are depressed do not require a full mental health assessment, but they become cognitively impaired as a result of their depression, so that is a good proxy indicator. That is why, when we were thinking about the inspection of older people’s care, I was keen that we looked at not only dementia but cognitive impairment, because that is a good proxy measure of what is going wrong with an older person’s mental health. We do not do a full mental health assessment as such, but picking up on cognitive impairment begins to get us into the area that you talked about.”44

Following this logic, our elders are being understood in a more “holistic” way, in terms of who they are, how they feel and their unique individual circumstances and life-stories (most commonly) by a 4-item screening test, that is a mandatory recommendation for “improvement” that asks: your name, age, where you are and the current year.

I really would ask that Healthcare Improvement Scotland think again about this. I say this as NHS Boards will not do so. They will understandably follow all the recommendations. Whilst our elders, on the specifics of such improvement work, appear to have no voice, either individually or collectively. This can hardly be reasoned as respectful, dignified or plain-simply “patient-centred”

It occurs to me that there are parallels with the improvement work in delirium with the recent drive in policy for early diagnosis of dementia.[62] Both these wide ranging initiatives are based on conditions/diseases that affect the individual. Both conditions can be very serious where ethical medicine and nursing have a duty of care. However, these initiatives must recall they start on a “pathway” that is orientated by the condition and/or disease. This is not the same as starting with the person.

Dr Leon Eisenberg has written about this in less faltering way than I can:

“I have elsewhere proposed the usefulness of distinguishing between “disease” and “illness,” terms employed synonymously in ordinary usage. Physicians are taught to conceptualize diseases as abnormalities in the structure and function of body organs and tissues. However, patients suffer illnesses; that is, experiences of disvalued changes in states of being and in social function.”45

We can, and should continue such improvement work, but I would argue that we must be mindful that we collectively have an ethical duty first and foremost, one that is central to respecting the autonomy and dignity of patients. The King’s Fund has just this week published a report that concludes that the way that the United  Kingdom manages its ageing population needs to “change radically so that care is coordinated around all of a person’s needs rather than being based on single diseases.”[63]

(b) “Infusion of worldwide teas”[64]
This piece of writing is nearly at an end. I realise that much has been covered in a most complicated narrative. I do not know about you but I have generally found that life is like that. This short closing section has taken as a title a few words from Love in the time of Cholera. I have read this book several times and the Fermina Daza’s tea69 always struck me as a metaphor for the best approach to understanding: that we should try and infuse this with real-world considerations. I could see in this tea, the words of Leon Eisenberg, words that have equally mattered to me in my approach to improving health, understanding and care:

“The very success of biomedicine has exacted a price in the way it has narrowed the physician’s focus exclusively to the biology of disease. However, the remedy does not lie in abandoning reductionism where it is appropriate but in incorporating it within a larger social framework to enable the physician to attend to the patient as well as to the disease.”45

Leon Eisenberg was also of the view that “what has hampered progress is too narrow a view of the sciences relevant to medicine.”45

I am going to conclude, that well intentioned as these pathways to “triage” our elderly by mandatory cognitive screening tests most certainly are, there are risks. This process involves reductionist tests, being recommended for use by non-trained staff. The risk is that such shorthands are regarded as more important and robust than overall holistic assessment. I use validated rating scales everyday and when and used carefully and ethically they are an important part of overall assessment.

In improvement work such as this might we unintentionally be strapping ourselves to isolated measures that are the “quickest” and perhaps cheapest ways of addressing the needs of an ageing population who may present unwell? Would it not be better, for all concerned if we trained and provided more frontline staff, doctors and nurses, who take a holistic, scientific and ethical approach to proactive old age medicine?[65]

The Clinical Standards may be 12 years old now, but these words have surely been found prophetic: “Geriatrician involvement in acute care has increased over the years, but the pattern of service provision and the degree of collaboration with other specialists vary greatly across Scotland. Only a minority of older acute sector patients are cared for by geriatricians. Care of older people is now a major task for most acute specialties.”35

I want to very briefly talk about fear. This matter was actually raised by Dr Graham Ellis in his film for Healthcare Improvement Scotland. In talking to the relatives Dr Ellis has become acutely sensitive, as I have, of “the fear that their loved ones have of being admitted to a Nursing Home.”17 In my job as an NHS  Consultant in the community I see patients recently discharged from hospital. I am of the view that they are more fearful than ever about being understood for their cognition alone. That they are aware that they will have memory tests whether they like it or not. The line of thought that follows may be subconscious, but it often seems to be: “if they think I am confused they will regard this as dementia (or Alzheimer’s)” – “I will not recover from this” – “I am going to end up in a Nursing Home and die there.”

This is why we need to engage our elders in decisions that may affect them. We can and should ask relatives and carers, but we also need to study wider cultural fears in our ageing population generally so that we improve care as we all wish so to do.[66]

Bettina Piko suggested in a paper now a decade old, that medicine should be viewed as an “integrative, biopsychosocial science,” and that “medical education must involve the study of the biological structures and psychosocial functioning of human beings not as separate systems, but as interactive ones.” Dr Piko suggested in conclusion that the “physician needs to become a sort of neo-polymath in a new Renaissance.”[67]

This week a good example of such an approach was published in the BMJ online pages. It was by a Senior House Officer called Dr Sarah Lois Pinninty.[68] One of the points that Dr Pinninty made was the risk of over-burdening services through well-intended improvements that are based on reductionist and poorly validated tests. The potential situation that may arise is that as services are stretched further, those most in need actually may be less likely to get the level of service they require. We must be wary of faltering steps into a world of inverse-care.

I am not recommending this to everyone

(click anywhere on the picture above to play film)

[1] Márquez, G. G. Words from p311 of “Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[2] Morgan, Edwin. In the snack bar. Carcanet Press and Mariscat Press

[3] Inouye, S. K. et al  Review: Delirium in elderly people The Lancet Volume 383, Issue 9920, 8–14 March 2014, Pages 911–922

[4] The Scottish Delirium Association was formed by a group of health professionals working across Scotland. Its aim is to provide a forum for discussion and sharing of best practice.”

[5] NICE Clinical Guideline 103: Delirium. Issued: July 2010

[6] LaMantia, M. A. Screening for Delirium in the Emergency Department: A Systematic Review. An Emerg Med. 2013;1-12

[7] Section 2.1 Care of older people in acute hospitals.  Board meeting: a public meeting of the Healthcare Improvement Scotland Board 18 December 2013. Boardroom, Gyle Square, Edinburgh

[8] Annual Scrutiny and Inspection Plan: Draft for Consultation – 2014-15 Healthcare Improvement scotland “This consultation has now closed.”

[9] The Whittle Report. Report on the review of the methodology and process for the inspection of the care of older people in acute hospitals. November 2013

[10] Bond, P. Team leader for Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014

[11] MacLullich, A. Delirium and “Terminological chaos”

[12] Thoreau, H. D. ‘Men have become the tools of their tools’ Milder, 1995: 63

[13]The 4A Test: Screening instrument for cognitive impairment and delirium”

[14] MMSE Folstein M. F. et al “”Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician”. (1975). Journal of Psychiatric Research 12 (3): 189–98.

[15] King, G. Speak Up! The Mini Mental State Examination a tool or a weapon? Mental Health Lecturer, University of Dundee. Mental Health Nursing. Oct/Nov2013, Vol. 33 Issue 5, p14

[16] Ellis, G. Clinical Lead on Frailty for Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014  (brief discussion on the “Frailty Screening Triage Tool”)

[17] Healthcare Improvement Scotland. An interview with Executive Clinical Director of Healthcare Improvement Scotland, Dr Brian Robson, on clinical engagement

[18] NHS Forth Valley: Integrated Model of Care for Patients with Dementia ALL PATIENTS > 65 YEARS MUST BE SCREENED FOR COGNITIVE IMPAIRMENT” 19 Jun 2013

[19] AMT4 – A shortened four-item version of the Abbreviated Mental Test (AMT4) was constructed using the following items: (1) Age, (2) Date of birth, (3) Place, and (4) Year, with impaired cognition indicated by an AMT4 score of less than four.

[20] Confusion Assessment Method (CAM). Adapted from Inouye et al., 1990.

[21] Miller, M & McDonald Identification and Immediate Management of Delirium. Improving Care for Older People (in Acute Care) Version 2 – updated on 5 July 2013 following a period of initial testing Driver diagrams, change interventions and ideas for testing

[22] Healthcare Improvement Scotland. Raigmore Hospital. Older people in acute hospitals announced inspection 24-26 September 2013

[23] Healthcare Improvement Scotland. St John‘s Hospital. Older people in acute hospitals unannounced inspection 3-5 September 2013

[24] Healthcare Improvement Scotland. Western Isles Hospital. Older people in acute hospitals announced inspection 13-18 October 2012

[25] Care for older people praised. 18 Sept 2013.

[26] Healthcare Improvement Scotland. Larbert Hospital. Older people in acute hospitals announced inspection  23-25 Jul 2013

[27] Gordon, P. J. Letter to Ian Smith, Senior Inspector, Healthcare Improvement Scotland. 23 Sept 2013

[28] Sleeman,E. Editorial: The Liverpool care pathway: a cautionary tale. BMJ 2013;347:f4779 Published 31 July 2013

[29] Smith, I. Letter of reply from Healthcare Scotland. 3 Dec 2013

[30] Robson, B. Executive Clinical Director Healthcare Improvement Scotland. Letter dated 31 Jan 2014 to Dr Peter J. Gordon

[31] Gordon, P. J. E-mail to Healthcare Improvement Scotland following teleconference on 30 Jan 2014

[32] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) page 7

[33] Healthcare Improvement Scotland.Our work and achievements 2012-2013. Interview with Executive Clinical Director, Dr Brian Robson

[34] Minute of NHS Forth Valley Performance & Resources Committee 7.1 Francis Enquiry Update on Action. 5 Nov 2013

[35] Forth Valley NHS Board Clinical Governance Committee meeting 6.5 Update on Francis Report 11 Oct 2013

[36] Delirium and Dementia Study Day. Forth Valley Royal Hospital. 6 March 2014

[37] Curran, D. The Quality Unit – Planning and Quality Division. 13 Feb 2014 Letter on behalf of Alex Neil Cabinet Secretary for Health and Wellbeing to Dr Peter J Gordon. ref: 2014/0001500 In response to Dr Gordon’s letter of 31 Dec 2013

[38] Márquez, G. G. Words from p227 of Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[39] Sokel, D. Ethics Man: Informed consent is more than a patient’s signature BMJ 2009;339:b3224 Published 27 August 2009

[40] Healthcare Improvement Scotland. Minutes of evidence given to Scottish Parliament Health and Sports Committee 15 Jan 2013

[41] Eisenberg, L. Science in Medicine: Too Much or Too Little and Too Limited in Scope? Am J Med. 1988 Mar; 84: 483-91.

[42] Wilson, S View expressed on social media on cognitive testing for all 65 year olds and over. 2 Feb 2014

[43] NICE Guideline CG103 Delirium: Diagnosis, prevention and management. This Guideline and the pathway it recommends begins with a chapter on  “Person Centred Care”

[44] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p66

[45] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland) p32

[46] Clinical Standards: Older People in Acute Care. October 2002. Clinical Standards Board for Scotland (Promoting Public Confidence in NHSScotland)  p50

[47] Board meeting: a public meeting of the Healthcare Improvement Scotland Minute 2.3 National screening programmes 18 December 2013, Edinburgh

[48] Davis, H E-mail of reply from UK National Screening Committee 3 Mar 2014

[49] Healthcare Improvement Scotland Care for Older People in Acute Hospitals. Overview report (August 2012 – April 2013) Section 3.0: Key Findings. Report dated July 2013

[50] MacLullich, A. Professor of Geriatric Medicine, University of Edinburgh. Secretary of the Delirium Association. Older People in Acute Care Improvement Programme.  Healthcare Improvement Scotland film (1 of 5) March 2014  (Delirium pathways, delirium screening and the 4AT screening test for cognitive impairment and delirium))

[51] Reynish, E All older people should be assessed for memory function 12 July 2013 Professor Reynish is Chair of the British Geriatrics Society Dementia and Similar Disorders Section

[52] Wolff, L. Chair of Scottish Delirium Association (SDA) Improving care for older people in acute care Team Flash report. Preventing and Improving Delirium in Patients over 65 with hip fracture. Improvement Planning Event. March 2014

[53] Wolff, L. THINK Delirium. Delirium Management Pathway: Chair of the Scottish Delirium Association (SDA) and Brian McGurn (SDA) Health Improvement Scotland: Michelle Millar and Karen Goudie Presented August 2013

[54] Cleaver Lorraine. Comment on social media on Healthcare Improvement Scotland recommendations to test all our elders admitted to hospital with the 4AT test. 3 Feb 2014

[55] Heath, I. View expressed on social media as to mandatory cognitive screening for all aged 65 and over admitted to acute hospital. 2 Feb 2014

[56] Francis, R. The Francis Report. Mid Staffordshire NHS Foundation Trust Public Inquiry. 6 Feb 2013

[57] “What is required now” A short film. A year on from the Francis Enquiry. By Omphalos.

[58] Hole Ousia. The writings of Dr Peter J. Gordon

[59] The Whittle report 2.1 National standards, guidance and best practice. As used as basis for Inspections. November 2013

[60] Knűppel H, Mertz M, Schmidhuber M, Neitzke G, Strech D (2013) Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis. PLoS Med 10(8): e1001498. doi:10.1371/journal.pmed.1001498

[61] Gordon, P.J. Dementia Guidelines: research and clinical criteria are not simply “interchangeable”

[63] King’s Fund. Making our health and care systems fit for an ageing population. 6 Mar 2014.

[64] Márquez, G. G. Words from p395 of Love in the time of cholera”. First published 1985 in Spanish. Penguin books

[65] Marcantonio art al. Reducing delirium after hip fracture: a randomized trial. J Am Geriatr Soc, 49 (2001), pp. 516–522

[66] Manthrope, J et al From forgetfulness to dementia, Br J Gen Pract 2013; 63: 30–31

[67] Piko, B. Physicians of the future: Renaissance of polymaths?  J R Soc Promot Health. 2002 Dec;122(4):233-7.

[68] Pinninty, S. L.  Senior House Officer Chesterfield Royal Hospital, Calow, Chesterfield, Derbyshire. March 2014. British Medical Journal rapid-response

“Alzheimerisation”: wandering, wondering and worrying

28th January 2014

Data published this week demonstrated that in 2012 prescribing of “dementia drugs in Alzheimer’s disease” was “50% higher than expected.”[1] In a published commentary about this, it is stated that “experts say that the discrepancy may be because of rising prevalence rates, and an underestimation by analysts of the number of people with Alzheimer’s disease”.[2]

Of course, it is just as feasible that there could be other explanations for this dramatic increase in prescribing. Here, I am going to share with you some of my thoughts against the potential backdrop that some sociologists have chosen to term as “Alzheimerisation”.[3]

(1) Wandering
It is not just our elderly who may wander. Recently I got lost in our new ward designed for those with dementia! I also want to suggest that our “experts” have wandered and may still be wandering. Between 1962 and 2013, roughly the duration of my life so far, we have had twelve different categories for mild cognitive change in the later years of our life.[4]

The wandering of our experts has been between ageing and disease. On expert “maps” they have generally been placed in separate spaces.[5]

Alzheimer’s disease is a pathological diagnosis based on post-mortem microscopic pathological changes in the brain. This is a definition based on the understandings of 1908 and which subsequent research has established as limited. Professor Clive Ballard, one of today’s leading experts in Alzheimer’s disease summarised this in the Lancet in 2011 “The paradigmatic brain pathology of Alzheimer’s Disease – plaques and tangles – is only a post-mortem finding of limited explanatory value in the expression of dementia in the population.”[6] Forty years of research on amyloid deposition has found that it has no simple causative role[7] and indeed post-mortem studies have established that amyloid deposition is generally also found in the post-mortem brains of those who have lived long lives without any cognitive or memory loss.[8]

(2) Wondering
We all wonder[9]. Even with dementia, despite all the bleak reporting, we generally still have much capacity to wonder. The day that science stops wondering is a day that should worry us all.

Using data from 2011 (the year before we find this 50% increase in prescribing of dementia drugs1) it has been established that the prevalence of dementia has actually significantly reduced.[10] Professor Sube Banerjee recently gave commentary to this in the Lancet and stated that “The CFAS data point to substantial added value from existing healthy lifestyle messages. They suggest that lifestyle changes – e.g., in diet, exercise, and smoking – might reduce the risk of dementia and promote more general health and wellbeing. This notion should be incorporated into health promotion messaging. Inclusion of the potential benefit of dementia prevention in communications could drive greater adoption of healthy life-styles with resulting benefits for individuals and society.[11] I would agree. It thus interested me, that in this report, Professor Banerjee never once used the word “Alzheimer’s”. So I am left wondering about a mismatch of language between Professor Banerjee’s report11 and the latest statement that the prescribing for “Alzheimer’s” has increased by 50% in one year.1

Our Prime Minister has talked a lot about the myths that have added to the stigma of dementia.[12] I agree with our Prime Minister that myths should not be part of medical science. I wonder then why the prevailing “understanding” has been that for the four licensed drugs for dementia that they can potentially improve the outcome especially if instituted early. No robust evidence has ever supported such conclusions.[13] The prevailing early diagnosis strategies and targets, promoted by dementia experts, political and charity leads, made very little effort to correct this understanding.[14]

(3) Worrying
I admit that I worry quite a lot. Given my determination to pursue science that is pluralistic and that heeds the lessons of history and cultural change, I have in recent years, started to worry that we have “re-branded” too much of memory loss in old age, and generally, as “Alzheimer’s disease” or even just “Alzheimer’s”.

In the 1990’s the pharmaceutical industry, hopeful that anti-amyloid drugs would be efficacious, employed branding firms, such as Complete Clarity to “build” a “future-focussed market landscape.” [15] At the same time key opinion leaders were employed to “educate” the medical profession on this newly “built” “market landscape”. Many of these Key Opinion Leaders are today still being well paid for educating us all.[16] Perhaps I worry too much about this? Perhaps we should all be reassured that such experts have greater ability to be objective and so are uninfluenced by potential biases that evidence has demonstrated influence the rest of us.[17] Last year for example, Ballard, who had confirmed that “the paradigmatic brain pathology of Alzheimer’s Disease – plaques and tangles – is only a post-mortem finding of limited explanatory value in the expression of dementia in the population”6 published a paper, sponsored by Lundbeck, in which he outlined the “barriers to evidence-based prescribing in Alzheimer’s disease”. In this paper Ballard made a “key point” that “only about 10% of dementia patients receive an acetyl-cholinesterase inhibitor or Memantine”[18]

As I recently described in my blog (the Forgetfulness of others[19]) I am a full supporter of all research and innovation that aims to improve the outcome and the lives of those living with dementia, of whatever stage. I would urge that the approach to such research has a pluralistic base and is led by science that Robert K Merton insisted should be disinterested i.e. not for personal advantage but for the progression of science alone.[20] In this respect, I personally found the big-business framing of the G8 Dementia Summit as an opportunity that actually risked the sort of imbalance that the BMJ have considered as “too much medicine too little care”.[21]

I also was left worried after the G8 Dementia Summit that the recurrent use of military and plague metaphors used by many of the dementia experts and politicians, in effect actually risked heightening the stigma that, in the same breath, they urged us to address.[22]

Nearly two years ago, I made a film called The diseased Other[23] in which I sought to outline my concern that we risk mislabelling one-in-two of our most elderly as “suffering” from “Alzheimer’s disease”. If my worry is valid, then we must consider if we have truthfully explained the scientific uncertainties of the diagnosis of Alzheimer’s disease in this age group. Most of the dementia experts I ask today cannot easily answer this seemingly straightforward question: “What do we mean by Alzheimer’s disease?”[24] Our elders deserve full engagement with both our certainties and uncertainties even if Banerjee considers the latter as “toxic”.[25] Both false-negative and false-positive diagnoses should concern us equally. To worry about one and not the other is simply unethical.

I also worry that our elders are today more fearful than previous generations about dementia, or as “Alzheimer’s” as it now almost seems synonymously misunderstood. I would like to see more research in this area.[26] I have certainly found a disproportionate level of fear in many of those who come to my clinic or who have been discharged from hospital (this is increasingly the case now that cognitive screening is mandatory for any individual 65 or over admitted to hospital.)[27] The controversial Dementia DES has now been well debated, and is based on the view that our elderly need not be asked for consent for memory-testing and that dementia should be “case-found” regardless of patient wishes.[28]

So in summary, I close with three questions:

  1. Do  we risk, through policy approaches and “healthcare improvement”, re-labelling many of our oldest citizens as “suffering” from “Alzheimer’s disease”?
  2. Might this latest report of a 50% increase in prescribing of dementia drugs be indicative of this?
  3. Should the “Alzheimerisation” neologism be confined to room 101 or should it have full light of day?

I proudly sign off as a wanderer, wonderer and worrier.

[1] Health & Social Care Information Centre: Use of NICE appraised medicines in the NHS in England – 2012, experimental statistics,21 Jan 2014

[2] Duffin, C. Alzheimer’s dugs ‘overprescribed’ suggest NHS figures. PULSE magazine, 24 January 2014

[3] Giggs, P. and Rees Jones, I Medical Sociology and Old Age – Towards a sociology of health in later life. From Chapter 5 Chapter 5: The death of old age, critical approaches as undertakers. Routledge. 2008

[4] Le Couteur, D.G, Brayne, c. et al Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis. Published 9 Sept 2013. BMJ2013;347:f5125

[5] George, D. R., Whitehouse, P & Ballenger J. The Evolving classification of dementia: placing the DSM-V in a meaningful historical and cultural context and pondering the future of “Alzheimers” Cult Med Psychiatry. 2011 Sep;35(3):417-35.

[6] Ballard, C et al Alzheimer’s disease, Lancet 2011 Mar 19;377(9770):1019-31

[7] George, D.R., Whitehouse,P.J., D’Alton,S and Ballenger, J. Through the amyloid gateway. The Lancet, Vol 380 December 8, 2012

[8] Reisa A. Sperlinga et al Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease Alzheimer’s & Dementia 7 (2011) 280–292.

[9] Tallis. R. In Defence of Wonder and other Philosophical Reflections. Published 2012. Acumen

[10] The Cognitive Function and Ageing Study (CFAS) I and II

[11] Banerjee, S Good news on dementia prevalence – we can make a difference. The Lancet. 26 Oct 2013

[12] Cameron, D. The Prime Minister’s Challenge on Dementia. Policy paper Published 26 March 2012

[13] Drug Discovery Programme – Alzheimer’s Society Dementia Research 14 Jan 2014

[14] Midgley, Mary. The Myths we live by. Routledge. 2004

[15] Mapping the Future of Alzheimer’s Disease: The Business Problem

[16] Moynihan, R. Key opinion leaders: independent experts or drug representatives in disguise? Published 19 June 2008 BMJ2008;336:1402

[17] Spurling, G. M et al Information from Pharmaceutical Companies and the Quality, Quantity, and Cost of Physicians’ Prescribing: A Systematic Review. Published: October 19, 2010. 10.1371/journal.pmed.1000352

[18] Ballard, C. Barriers to evidence-based prescribing in Alzheimer’s disease. March 2013. British Journal of Mental Health Nursing, Vol2 No1

[19] Gordon P., The forgetfulness of others.1 January 2014

[20] Merton, R.K The changing production system of scientific knowledge from Hole Ousia

[21] British Medical Journal: Too much medicine campaign

[22] Ashcroft, R. Why I feel angry, not grateful, after Cameron’s dementia summit. The Guardian. 12 December 2013

[24] Richards, M and Brayne C. What do we mean by Alzheimer’s disease? Published 12 October 2010 BMJ2010;341:c4670

[25] Burns, A and Buckman, L. Timely Diagnosis of Dementia: Integrating Perspectives, Achieving Consensus  Meeting London, June 2013

[26] Manthorpe, J. From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences. British Journal of General Practice. 2013;63: 30-31

[28] Haynes, J Dementia DES will result in widespread misdiagnosis, expert claims 12 Sept 2013 PULSE

The forgetfulness of others

To grow old, as Simone de Beauvoir said “is to define oneself” and being defined is privative as well as positive”

I have always been interested in the history of my profession. In what follows I am going to offer my personal look-back at the last year in the world of dementia as it reached me as a medical professional. This year is now confined to history, just like every other year before it. I shall try not to leave anything out, but the world is a big place and I was born into it backwards and so I may not spell it out in the same way as you would. My twitter name is PeterDLROW[1]. All I ask is for your forbearance and hope that you may find something of interest in these personal reflections.

For clarity I shall divide what I am about to write into two sections: the first section (PART I) shall explore the language used in discussing dementia, and the second section (PART II) shall look at dementia policy as it has developed in the United Kingdom. Whilst I will look back over the last year, it is quite likely the time-frame may reach back further. Sometimes dates don’t always stay clearly with me and I find this a little more so when I am trying to recall so many happenings.

Written by Dr Peter J. Gordon, 31st December 2013

PART I: Dementia: the “epidemic” of metaphors

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

[1] Folstein M.F,et al (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician”. Journal of Psychiatric Research 12 (3): 189–98. As part of the mini–mental state examination (MMSE) the rater will ask you to spell WORLD backwards. The MMSE is now under copyright

PART I: Dementia: the “epidemic” of metaphors

At the creative heart of science is a spirit of open-minded enquiry[1]. 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[2]. 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, have 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[3]. This Target having been reached has since been hailed by the Scottish Government as demonstrating how the Scottish Government “have been doing quite well[4].”  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[5] in London I struggled to count the number of times the word “fight” was used[6]. 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[7]. 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”[8] I addressed the use of such military metaphors for dementia in a published response to the British Medical Journal[9] 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[10].

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’[11]. 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.[12]

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.[13]

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[14].”

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.[15]

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[16].”

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”?[17] 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[18].”

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[19].

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[20].

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[21].”

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[22].

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[23].”

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[24]” 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[25]:

“[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[26]:

“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[27]. The minutes of this round-table discussion were most helpful but, from my perspective, disappointingly light on ethical considerations[28]. 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.[29] 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[30].

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[31].

“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.’[32]

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[33].

(5) MAPS
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? [34]

My first introduction to “dementia mapping” was the TESCO sponsored map included with a letter from the Scottish Government[35]. 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[36]. 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[37]:

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

[1] Sheldrake, R. The Science delusion: freeing the spirit of enquiry. Published 2012, Hodder & Stoughton Ltd

[2] Paley, J and Lilford, R. Qualitative methods: an alternative view (February 2011) British Medical Journal ; 342:d424

[3] Scottish Government, HEAT Target 4

[4] 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 Commons Committee Room 17 on 13 March 2012‎ Geoff Huggins opens: “To begin with, the graph we put out at the beginning showed that we have been doing quite well in Scotland. Since this came out at the end of last week, I have had a few calls and am having to go and explain to my Permanent Secretary why it is that we seem to have done quite well.”

[5] G8 Dementia Summit programme 12 December 2013

[6] Lane HP, McLachlan S, Philip J. The war against dementia: are we battle weary yet? Age Ageing 2013;42:281-3.

[7] Dementia Challenge as Launched by Prime Minister David Cameron, date,

[8] George Bernard Shaw (unknown date) in private correspondence to James Crighton-Browne

[9] Letter: Taking dementia seriously. By Dr Peter J. Gordon. Published 18 April 2012 BMJ 2012;344:e2745

[10] Annual Conference of Royal College of General Practitioners. Dementia debate. Presentation by Dr Peter J. Gordon including the short film “Fighting Talk” 3rd October 2013

[11] Personal View: Stop using military metaphors for disease. By Natasha M Wiggins. Published 12 July 2012. BMJ 2012;345:e4706

[12] Tallis, R. Hippocratic Oaths. Published, 2004 Atlantic books

[13] G8 Dementia Summit: Prime Minister’s speech, 11 Dec 2013

[14] Ashcroft, R. Why I feel angry, not grateful, after Cameron’s dementia summit. The Guardian. 12 December 2013

[15] Leckridge, Bob. How should we respond to increasing dementia rates?17 Dec 2013.

[16] MacLullich, A as quoted on BBC Scotland News: More older patients ‘likely to have undiagnosed dementia’  7 September 2012

[17] Rahman, S. Does the epidemiology of dementia constitute an ‘epidemic’, and does it warrant a “moral panic”? Posted on June 23, 2013

[18] Greenland, S., Last. J.M., and Porta, M.S. (2008) A dictionary of epidemiology, New York: Oxford University Press.

[19] United Nations Report. 2007

[20] Paradis, E., Albert, M., Byrne, N., and Kuper, A. (2012) Changing Meaning of Epidemic and Pandemic in the Medical Literature, 1900-2010. American Sociological Association Conference, Denver, CO: August, available at:

[21] Spijker, J. & Macinnes, J. Analysis: Population ageing: the timebomb that isn’t? Published 12 November 201 BMJ2013;347:f6598

[22] New guidelines relax blood pressure goals. Published 24 December 2013. BMJ2013;347:f7621

[23] Heath, Iona. Chronic kidney disease definition: Whatever happened to normal ageing? Published 18 September 2013 BMJ 2013;347:f5572

[24] Le Couteur et al. Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis Published 9 September 2013. BMJ2013;347:f5125

[25] Burns, A. et al Too Much Medicine: dementia Rapid-response published 1 Oct 2013

[26] Fadipe, B.J., Re: Alistair Burns and 51 colleagues reply to David Le Couteur and colleagues. Published 16 Oct 2013

[27] Burns, A & Buckman, L (on behalf of the Timely Diagnosis of Dementia Consensus Group) Timely diagnosis of dementia: Integrating Perspectives, Achieving Consensus. July 2013

[28] Strech, D et al. The full spectrum of ethical issues in dementia care: systematic qualitative review BJP June 2013 202:400-406; doi:10.1192/bjp.bp.112.116335

[29] Gigerenzer, G. Reckoning with Risk: Learning to Live with Uncertainty. Published 2003. Penguin

[30] Lineweaver, T.T. et al. Effect of Knowledge of APOE Genotype on Subjective and Objective Memory Performance in Healthy Older Adults. Am J Psychiatry. 2013 Oct 30. doi: 10.1176/appi.ajp.2013.12121590.

[31] Gordon, P. J., Window Tax Mental Health and Social Inclusion, Vol. 16 Iss: 4 pp. 181 – 187 Published 2012.

[32] Sartorius, N. Editorial: Iatrogenic stigma of mental illness Published 22 June 2002 BMJ2002;324:1470

[33] McWilliam, C. What to look for in Winter: A memoir in blindness “”The medical term used for my type of blindness is ‘functional’. Back to that word ‘functional’. Perhaps it is my Scottishness, but I can’t see a way of writing this book without wanting it to be of some use.”

[34] Midgley, M. The Myths We Live By. Chapter 4. Published 2004. Routledge

[35] Huggins, G. & Gallagher, S (Mental Health Division Scottish Government). Dementia diagnosis Rates: NHS Scotland Health Boards lead the UK. Dated  23 Mar 2013. Sent to all NHS Boards and disseminated to staff

[37] Ballat, J. & Campling, P., Intelligent Kindness: Reforming the culture of healthcare. Published by: The RoyalCollege of Psychiatrists, 2011

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

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?

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.

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.”

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.

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].

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[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].

The G8 Dementia summit was held at Lancaster House in London on 11th December 2013. “Delegates included G8 Ministers, researchers, pharmaceutical companies and charities[45]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[46].”

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[47] 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[48] “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’[49]

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[50].” 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.[51]” 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[52]. 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[53]  

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.

In his keynote address to the G8 Dementia Summit, David Cameron said:

“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[54]”. I have had longstanding interest in Cambridge Cognition[55] given one of its products, CANTABmobile[56], 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[57]. 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 am concerned about the promotion of and government support for an isolated test that has been presented misleadingly and avoids discussion of uncertainty and harm.”[58],[59]

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[60] 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[61]”. 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[62].” 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[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.

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.”

[1] Burns et al.  Re: A rallying call for an evidence based approach to dementia ‎and related policy development. 21March 2013

[2] 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

[3] Taylor, Richard Alzheimer’s from the inside out:

[4] Richards, M. & Brayne. C. Analysis: What do we mean by Alzheimer’s disease? Published 12 October 2010. BMJ2010;341:c4670

[5] Gordon, P.J. Letter: Proposed dementia screening: Confusion is everywhere. Published 30 January 2013 BMJ2013;346:f511

[6] Taylor, R. Personal reply by Richard Taylor  to “Part I: The “epidemic” of metaphors” 2 Jan 2014

[7] Robert K. Merton, “Social Structure and Anomie”. American Sociological Review, 3 (October 1938): 672–82.

[8] Department of Health. the Dementia Challenge: Putting Dementia on the Map

[9] Spence, D. Kill the QOF. Published 6 March 2013 BMJ2013;346:f1498

[10] Hunt, J. Keynote address as Secretary of state for Health to the Annual Conference of the Royal College of General Practitioners.3 Oct 2013

[11] Hunt, Jeremy. In his film that supports the Dementia Challenge: Putting Dementia on the Map

[12] Dementia Prevalence Calculator (v2)

[13] 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

[14] 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).

[15] Cartmell, N. Reply to Dr Peter J. Gordon on the “dementia prevalence calculator” 25 August 2013

[16] 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).

[17] 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.”

[18] Heath, Iona. Analysis: Overdiagnosis: when good intentions meet vested interests. Published 25 October 2013. BMJ2013;347:f6361

[19] Brunet M. Target Diagnosis Rates – a New Mechanism for Overdiagnosis? (submitted but not yet published)

[20] 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

[21] 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

[22] Gordon, Peter J. FOI returns from all 22 NHS Scotland Boards on their “Hospitality Registers”

[23] Godlee, F. The BMJ’s stance on collaboration with industry.Published 29 October 2013. BMJ2013;347:f6467

[24] Moynihan, R. Key opinion leaders: independent experts or drug representatives in disguise? Published 19 June 2008

[25] 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

[26] Gordon, P. J. “Truth telling and dementia”28 Apr 2013

[27] Godlee, F. Promises of transparency? Hold the applause. Published 6 March 2013. BMJ2013;346:f1513

[29] Letter: Issues around early diagnosis of Alzheimer’s disease. Published 18 October 2011. BMJ2011;343:d6613

[30] Spence, D. From the Frontline. Does early diagnosis really save lives? Published 19 June 2012. BMJ2012;344:e4252

[31] Spence, D. From the Frontline. Bad medicine: dementia. Published 1 June 2012. BMJ2012;344:e3859

[32] Gordon, P.J. Timely debate.22 Jun 2012.

[33] NICE guideline 42 (updated) and in Scotland SIGN 86 guideline

[34] Gordon, P. How we risk getting it wrong in cognitive screening too BMJ 2012; 344:e4043

[35] Frances, A. DSM5 Minor Neurocognitive Disorder. Psychol Today. 16 Feb 2012

[36] Alzheimer’s Disease International. World Alzheimer report 2011: The benefits of early diagnosis and intervention. 2011.

[37] Ballenger, J. Blog: To Conquer Confusion. The Alzheimer’s Hockey Stick. 20 Jun 2012.…

[38] Derek Hill of IXICO and UCL interviewed by Professor Alistair Burns:

[39] Farrell, L. Reply on twitter to Professor Alistair Burns. 21 April 2013.

[40] Burns, Alistair. Reply on twitter to Dr Liam Farrell.22 April 2013.

[41] Burns et al. Re: A rallying call for an evidence based approach to dementia ‎and related policy development. 21March 2013

[42] 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

[43] Unlocking Diagnosis, All-Party Parliamentary Group report. July 2012. House of Commons

[44] 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

[46] Gordon, P. J. and Gordon, S.F.  Dementia Guidelines: research and clinical criteria are not simply “interchangeable” 9 Dec 2013.

[47] Britton, Beth. A freelance campaigner and consultant, writer and blogger specialising in issues affecting older people, health and social care and specifically dementia.

[48] Rahman, S Why I wrote ‘Living well with dementia’21 Dec 2013.

[49] BBC news: Hope over dementia summit boost to ailing industry. 10 October 2012

[50] Rahman, S A binary choice between personalised medicine or person-centred care? We can’t go on like this.17 Dec 2013

[51] Rose, H. & Rose, Genes, Cells and Brains: Bioscience’s Promethean Promises of the new biology. Published 5 Nov 2012 by Verso Books

[52] Nelson, A.P., and O’Connor, M.G. (2008) Mild cognitive impairment: a neuropsychological perspective, CNS Spectr, 13(1), pp. 56-64.

[53] 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.

[54] Cambridge Cognition homepage:

[55] On this Board some of the promotional material on CANTABmobile provided by the Commercial company CAMBRIDGE COGNITION. All available open-source on internet

[56] Material relating to CANTABmobile: letters, views, scientific reports and publications:

[57] Gordon, P.J. Letter: CANTABmobile and its misleading promotion. Published 15 October 2013


[58] CantabMobile. Government backs new high tech early dementia assessment service to reduce time to diagnosis from 18 months to 3 months. 1 Nov 2012. www.cantabmobilecom/news-item.asp?id=5.

[59] 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.

[60] “IXICO: we put patients at the heart of what we do”

[61] Burns, A. In response to specific questions about IXICO and CANTABmobile. On social media 22 Aug 2013

[62] 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.,

[63] 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)

Dementia Guidelines: research and clinical criteria are not simply “interchangeable”

It was encouraging to read that the G8 summit on dementia to be held this week in London will discuss the rising impact of dementia on the world’s population and economy, in an effort to generate an international response to increase research into the disease.[1] That research into dementia needs to progress and to be funded deserves wide support. However it was concerning to find that the extensive pre-summit publicity made no mention of person-centred approaches and well-being in dementia and that the language used tended to return to notions of burden, cost and epidemic. It is essential to maintain a balance between biomedical research and investigating the simple day-to-day approaches which can make a huge difference to those living with dementia and their carers.

Dementia is a clinical syndrome with a number of causes, the commonest of which is Alzheimer’s disease. Alzheimer’s disease is defined in terms of brain pathology found post mortem. It is quite clear that many people die with evidence of the pathology of Alzheimer’s disease in their brain who never demonstrated any symptoms of dementia whatsoever[2]. Of the drugs used to treat dementia, donepezil, galantamine and memantine are licensed only for use in “dementia in Alzheimer’s disease” and rivastigmine for “dementia in Alzheimer’s disease or Parkinson’s disease”. It is therefore disappointing that, with reference to its CG42 Dementia guideline[3] the National Institute for Health and Care Excellence (NICE) states that “the guideline group, both in discussion and in the guideline, tended to use the terms Alzheimer’s dementia and disease interchangeably[4].” Similar confusion exists in the equivalent Scottish Guideline, SIGN 86: The Management of dementia[5]. The concern is that these influential documents might change the general approach to the diagnosis of dementia away from the clinical syndrome of dementia. This has no basis in currently available evidence, and ignores the ethics, complexity and uncertainty in this area, particularly in the most elderly.

All stakeholders should have a say in guideline development. This is rooted in the ethical theory of principlism, a term that covers all clinical (diagnostic or therapeutic) decisions that need to balance potential benefits and harms.

In a recent systematic review of 12 national Clinical guidelines for dementia[6] low mean rates of explicit coverage of ethical issues” were found. SIGN 86 Guideline on the management of Dementia rated poorly for inclusion of ethical issues. The rate of disease-specific ethical issues (DSEIs) that were explicitly addressed by SIGN86 was 22% with a worldwide median of 49.5%. Only Switzerland scored more poorly. When adding all implicitly addressed DSEIs the NICE guidelines for dementia (England & Wales) rated highest at 91% and the SIGN 86 guidelines (Scotland) the lowest at 35%. This appears to confirm an imbalance between the consideration of bio-medical aspects of dementia and those which focus on more general aspects of care. Just because the latter are harder to measure does not make them any less important. General aspects of care are also less likely to receive research support from industry.

SIGN confirms that for all its guidelines it “is committed to open declaration of competing interests in all its activities[7]”.  However it is also stated that “in line with our records management policy, the Declarations of Interest are retained on record for three years after publication of the guideline and then destroyed. Since it is over 3 years since this guideline was published the Declarations have been destroyed[8].” Thus we can only be left to speculate regarding any potential for bias. Recently this has been a subject of consideration as exemplified by recent articles on clinical guidelines[9] [10].

Whilst most clinicians would agree that acetylcholinesterase inhibitors have a potential role for mild symptomatic relief in dementia of an Alzheimer’s type, there are legitimate concerns that the impact of these drugs has been overstated. For example, in a study with large power published in the Lancet, in a sample of 565 patients with dementia of the Alzheimer’s type Courtney and colleagues found that donepezil is not cost-effective, with benefits below minimally relevant thresholds[11]. There has never been reproducible evidence in humans that cholinesterase inhibitors delay progression of either Alzheimer’s disease or dementia of an Alzheimer’s type.

The Dementia 8 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.

Published as BMJ rapid-response – 9 December 2013

By Dr Peter J. Gordon and Dr Sian F. Gordon

[1] News: Scientists want G8 countries to quadruple funding for dementia research within 10 years. Published 5 December 2013nBMJ2013;347:f7282

[2] Reisa A. Sperlinga et al Toward defining the preclinical stages of Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease Alzheimer’s & Dementia 7 (2011) 280–292.

[4] Communication Manager National Institute for Health and Clinical Excellenc. E-mail to Dr Peter J. Gordon dated 15 Feb 2012

[5] Scottish Intercollegiate Guidelines Network: SIGN 86 Guideline: The Management of Dementia. Published Feb 2006

[6] Knűppel H, Mertz M, Schmidhuber M, Neitzke G, Strech D (2013) Inclusion of Ethical Issues in Dementia Guidelines: A Thematic Text Analysis. PLoS Med 10(8): e1001498. doi:10.1371/journal.pmed.1001498

[7] Scottish Intercollegiate Guidelines Network (SIGN).  Policy on Declaration of interests. File name: 20111219. Dated 23 Jul 2013

[8] Programme Lead, SIGN. E-mail reply to Dr Peter J. Gordon. Dated 21 Oct 2013

[9] Lenzer, J Evidence Based Medicine: Why we can’t trust clinical guidelines Published 14 Jun 2013 BMJ 2013; 346

[10] Three quarters of guideline panellists have ties to the drug industry. BMJ2013;347:f4998

[11] Courtney, C., Farrell, D., Gray, R., et al. (2004) Long- term donepezil treatment in 565 patients with Alzheimer’s disease (AD2000): randomised double- blind trial, Lancet, 363(9427), pp. 2105–15.