I’d simply like a second chance to rebuild my life

I am simply another statistic. I am ‘1’ out of the very many the NHS needs to address ‘rota gaps’ in medicine. I’d like you to read this especially if you’re a national leader or a local TPD, in case you’re curious why people like me aren’t in the NHS workforce even though we deeply want to be. I am, of  course, deeply ashamed of my alcoholism, firmly in the past, but I am now in recovery, and I would like to be given a second chance.

The taxpayer in fact paid for me entirely to be trained in undergraduate medicine at Cambridge for six years. I completed my house jobs in 2001, in Cambridge and Norwich, such that I was officially registered as a medical practitioner a year after graduating.

It is now 2019.

I am very fortunate in that I have a small part time rôle as a special advisor for the NHS Practitioner Health in disability. I consider this to be a huge privilege to help doctors like me, and it is fantastic to work with Disabled Doctors Network. I went up to Manchester to sit and pass their revalidation assessment at foundation level in July 2019, and I indeed successfully went through my annual appraisal with my ‘designated employer’ in December 2019. In real terms, I have no unspent convictions etc., and I have a full license to practise without any conditions etc. I do not even have to work in ‘approved practise settings’ any more.

 

As a personal reaction to a protracted GMC investigation in 2003-6, and then becoming struck off in 2006, and then becoming even more alcoholic for a year with no income or social company, I then had a sudden cardiac arrest, epileptic seizure, respiratory arrest in 2007. I then was successfully resuscitated by the Royal Free NHS Hampstead, in fact with a cardiac arrest team led by a junior I was exact contemporary with at a London NHS hospital. In that hospital, my consultant, for whom I did not have a log book or written down personal development plan, later said he had been unaware that I was suffering from an alcohol dependence syndrome, and yet wrote a very damning statement about my problem drinking to the GMC. I was never advised to go to Occupational Health. But now is not the time for recriminations. In fact, I consider my truncated junior doctor training with no educational plan, comprising stand alone jobs, poorly overseen in the entirety. As a result of 2007, I became physically disabled for the first time. I was not allowed to see patients while struck off, so I completely retrained. Whilst in a wheelchair, and with my late father accompanying me to classes with a huge amount of effort, I graduated with my Bachelor of Law in 2009. I later completed by distance learning my Master of Law in 2010, and I attended classes to graduate successfully with my Master of Business Administration in 2012. My MBA, I feel, was not insubstantial, in that I studied in detail marketing, strategy analysis and implementation, innovation management, organisations and leadership. I have in fact subsequently co-authored a highly successful exploration of courage in healthcare systems. I sincerely thank Rebecca Myers for her incredible support at that time, as I was literally by my mum’s bedside in hospital half-blind writing my contribution late.

I completed my Ph.D. in psychiatry from Cambridge without corrections in 2001, on the diagnosis of the behavioural variant of frontotemporal dementia. My paper in 1999 has four other co-authors who are now all Professors, and in fact cited in the Oxford Textbook of Medicine’s Ch 24 2 2. I have in fact completed around 30 mostly first-author research papers, including from a time at the Institute of Neurology as a researcher in movement disorders, over a period of time of nearly twenty years, including a number of groundbreaking books on clinical geriatrics. My first book, ‘Living well with dementia: the importance of the person and the environment’ indeed won the best book of the year award for 2015 for the BMJ Book Awards.

I have even tried to give ‘something back’. In my time when I was early recovering from alcoholism, I wrote 3 books, one book on each part of the MRCP(UK) diploma assessment.

 

I have latterly become proud of my contribution to delirium education. This is a ‘labour of love’ for me, as I witnessed at close quarters my mum’s hospital admission with it. I am honoured that Prof Sharon Inouye from Harvard and Prof Alasdair MacLullich have written introductions to my delirium book to be published on June 18th 2020, in the same way I was deeply honoured that Prof Ken Rockwood wrote one of my forewords to my frailty book published in 2018.  The truth is that, whilst the books are substantial educational contributions, they do not earn any money for me.

 

A lot is said about the ‘workforce shortage’ in the NHS.

The fact is: I am desperate to do a training post.  The best thing that can happen for my health and wellbeing is for me to be a productive employee of society. I would like to give something back to patients. I think also this will alleviate a major stress of my life – a lack of salaried income (I do not of course qualify for any NHS pension). It will also produce much balance in my life, because otherwise my life is consumed by my mum who is now living with severe frailty and advanced dementia.

I just don’t feel my skills are recognised, either in medicine, but not even in change management or research. And I don’t feel I should aspire to a life on benefits. I passed my MRCP(UK) totally in 2005, and, having written books on it, I feel as if I know this quite well. The link to the list in the Clinical Medicine journal published by RCP London is here.

So what is stopping me from getting a job?

I’m told a lack of recent experience.

I am prepared to work unpaid, entirely pro bono. If I make a mistake, I can always be reported to the GMC (but I would obviously be preferred to be supervised as a junior doctor this time around.) I would like to be seen as a ‘free’ set of hands, willing to help at any place with clinical work on a supernumerary basis, and even help out with quality improvement, teaching, training and research, all of which matter hugely to me. I’m on the British Geriatrics Society special interest group in frailty in urgent settings.

I am deeply indebted to Health Education England London for taking me on to give me a chance to apply in the final year for their ‘Relaunch’ scheme, the aim of which was to enter a FY3 supernumerary post to re-enter the workforce. I am not eligible for their SuPPorT scheme as I am not a trainee, and/or my leave was not planned or anticipated.  In my defence, I did pass the computerised assessments which I paid to sit in a Pearson Vue assessment centre in clinical problems and professional dilemmas (a situational judgment test of the type which long predates my undergraduate qualification in 2001). The clinical problems test was apparently of a similar standard to the GP recruitment exam. Unfortunately, I was not able to pass their clinical interview. I paid a few thousand £ to attend MRCGP CSA courses as the assessment was of a consultation as would be done by a GP trainee. But the problem with this was that I have never been a GP trainee ever, never done any component of the MRCGP, never been supervised in GP consultations, and, despite asking over a lengthy period of time, I was never given a document explaining the scope or mark scheme of the assessment.  The assessment was never video-recorded. So I never got to do my F3 post, and it was a dream which died. I am not blaming HEE, but I think there is no national infrastructure for people like me, who were taken off the GMC register and subsequently restored after full recovery from my ill health. The GMC have told me, correctly, that they are not an ’employment agency’, but they have to all intents and purposes wiped their hands of the situation, despite their statutory underpinning under s.1(1A) Medical Act (1983) of a duty to promote patient safety.

But as I say, I am deeply indebted to HEE for this opportunity. I was able to do work experience in AMU at UCLH which I organised with the help of one of their consultants, which I loved. I have also done a stint of work experience in Highgate Mental Health Centre in 2018, which I adored. I forgot to mention that I took for fun, and passed, my Paper A of the MRCPsych exam. I did this as Prof Rob Howard thought it would be a good idea to get out of my flat once in a while – and I salute Rob for his support always.

I’m due to go on my immediate life support course in January 2020, my one -day crash course in phlebotomy and cannulation also the following day, and my Advanced Life Support (ALS) course in April 2020. Why am I doing a crash course in phlebotomy? Because I now have disability as a result of what happened to me in 2007 unlike when I was a junior doctor the first time around, and I paid £100 to go on this course because every email I sent to local NHS Trusts asking to re-skill me was ignored. I believe I can ‘reskill’. After all, I’ve successfully learnt how to drive again in the last two weeks over the xmas break, having surrendered my license voluntarily in 2005.

In summary, I am offering to work for a NHS Trust entirely for free.

What do I get out of it? I can improve my confidence while re-skilling and learning some real clinical medicine from others, including soft skills such as team work, time management and leadership. I believe strongly in the Osler adage is that being a Doctor without seeing patients is like a sailor who never goes out to sea (or I would say like a taxi driver who doesn’t like to drive a car.)

If successful, I can then get my certificate of foundation competences to be signed off, and then I can get on with the rest of my life, including applying for CT training preferably in psychiatry.  I am hoping of course to pass the ALS in the meantime. The irony is that you don’t need to be competent in doing a GP consultation to clerk a patient in a hospital. The two I feel are very different skills – look at this excellent piece by Dr Gordon Caldwell on being ‘free to think’ about the consultation from Clinical Medicine magazine, here.

I promise to work really hard. After all I’ve been through, I am not at all big-headed or arrogant. I’ve spent close to 15 years ‘just about managing’. I am trying to rebuild my future. I’d like to be given a chance.

Please contact me on Twitter if you have any helpful or constructive comments (@dr_shibley).

 

A silo mentality could hinder progress in delirium research and care

Silos are pervasive in many organisations, creating barriers which are obstructive to the reaching of common goals. The framing of geriatrics, from ‘silos’ to ‘systems’, in the context of interprofessional education has been considered elsewhere.

But older people quite often do not present as a result of single symptoms or diseases.

Consider the following vignette.

A person who is moderately frail, and a longstanding mild cognitive impairment, then develops delirium suddenly. She becomes more frail as a result of her hospitalisation, because she is virtually immobilised in bed for days, and she loses weight despite no activity as there is nobody there to encourage her to eat or drink because the ward is understaffed. She is discharged home much weaker, but then develops a long-term cognitive impairment in the months which follow limiting her activities of daily living.

This vignette raises a few issues.

Frailty is associated with an increased risk of delirium, but not always. The combination of physical frailty and a mild cognitive impairment seems to carry with it an increased risk of delirium, but, as has been discussed before, the relationship is hard to interpret because of the existence of polypharmacy and multimorbidity. I’ve told you nothing about the age or blood pressure of the patient, but, suggested by findings from machine learning of electronic health records, it is possible that these factors might be influential.

It feels to me intuitive that frailty should be a pre-disposing factor for delirium, but a recent systematic review and meta-analysis found that the evidence for this widely held belief was not actually that robust. There are various problems in conducting such a review, such as the heterogeneity of the definitions of both frailty and delirium and therefore the diverse identity of each. It’s possible that delirium represents the ‘sentinel event’ – when somebody’s cognition, behaviour and personality profoundly change – that, as a “cognitive harbinger”, signposts to a further decline.

I conceptualise frailty as both an increased vulnerability to stressors coupled with a (more often than not) incomplete recovery following a stressor (e.g. infection, stroke). I see therefore frailty as a feature of the behaviour of someone, who is not simply the sum total of their individual diseases. Therefore, I am cautious about the disintegration of the various ‘phenotypes’ of frailty using big data techniques into “frailty trajectories”, in case they unravel the various frailty syndromes which are dominated by single conditions such as dementia or osteoporosis, for example. Frailty trajectories themselves are intuitively attractive as they may help to identify individuals at higher risk of hospitalisation or even death. More specifically, I do think it is useful to acknowledge that delirium can be a catalyst for long term cognitive decline, and therefore as such might be responsible for a rapid accumulation of deficits under the Rockwood and Mitnitski model.  It is currently uncertain whether this long term cognitive impairment resembles phenotypically, pathologically or epidemiologically distinct forms of dementia such as Alzheimer’s disease or frontotemporal dementia, and, has been previously conceded, delirium might influence how age-related deficits from the neuropathology of dementia are expressed.

A recent study included data across a period of 17 years, with a consistently measured FI at each wave from six waves of the Longitudinal Aging Study Amsterdam, to inform frailty trajectories in a representative sample of Dutch older adults. This longitudinal study showed that the degree of frailty increased with ageing, faster than the age-related increase previously observed in cross-sectional studies. Even so, the rate of deficit accumulation was relatively stable during later life. What is less certain is whether a reduction in the rate of deficit accumulation during later life can buffer against ‘extreme shocks’ such as delirium, which might be hypothesised to produce a substantial and rapid rise in deficit number. We know perhaps from the North West Adelaide Health Study that frailty measurement is a good predictor of mortality up to 10 years, so it is a reasonable question to wonder how much of the excess  mortality from delirium which has been demonstrated well comes from frailty rather than the neuropathological process of delirium itself or medical/nursing complications.

The introduction and implementation of the electronic frailty index has advanced research. This index is cumulative deficit measure of frailty, available in most English primary care electronic health records.  It is a striking finding thatpeople aged over 75 with frailty who are at highest risk of death have a distinctive frailty trajectory in the last 12 months of life, with a rapid initial rise from a low baseline, followed by a plateau. But how much of this is mediated through delirium?  Frailty is a strong predictor of negative endpoints in hospitalised older persons, and may be useful for identifying older adults at high risks for mortality prevention. Intriguingly, this might not depend on the precise way in which frailty is measured or conceptualised. Baseline frailty status and one-year change in frailty status have been associated in the Taichung Community Health Study for Elders, with 6-year all-cause mortality among Taiwanese elderly adults.  The rate of change of frailty arguably needs to be explored further, as perhaps frailty fluctuations are closely associated with higher frailty levels, frailty growth and mortality. This would appear consistent with a notion of frailty fluctuations as a sign of a loss of homoeostasis and a consequence of overall system vulnerability. Out of the individuals who are initially frail who then develop long term cognitive impairment, does their physical frailty initially worsen but return to normal, putting aside any temporary period of deconditioning?

An obvious place to start is to look for the intersection between frailty and different forms of ‘conventional dementia’; for example, a consideration of overlap in their biomarkers may prove constructive. Understanding the relationship between frailty and all cognitive impairment continues to be a goal, with various putative biomarkers in the line of sight. Oxidative damage may hold the key, but understanding how is likely to prove difficult.

Facts matter. You can’t escape the fact that there are numerous causes of delirium, not all of which include inflammation (see for example Fig 1 of a relatively recent paper.)

nihms712961f1

The diversity of evidence is still young.

I admit there are some forms of long term of cognitive decline which are nothing to do with frailty and delirium, and delirium does not always take place on the background of a cognitive impairment. And so forth. But it is possible that an episode of delirium causes a substantial increase in the rate of accumulation of deficits in frailty, and this might lead to something which looks like dementia, comes to close to dementia, or is simply a worsening frailty. It is of importance to consider whether multicomponent interventions, as simple as good quality nursing and medical care, can be sufficient to decrease the risk of frailty, delirium and dementia, by stopping this vicious cycle in its tracks.  I am drawing attention to this, because I think it is impossible to consider frailty, delirium and dementia in distinct ‘silos’.  I am drawing attention to this also because, conceding this, means that we pay more attention to unpaid family and paid carers who are trying desperately hard to promote the health and wellbeing of these vulnerable individuals, and also trying very hard to keep them out of hospital.

@dr_shibley

 

Daniel Davis’ note for my book on delirium

This book fulfils its brief in every way – truly the Essentials of Delirium for all who are involved in delirium care. Delirium, the clouding of consciousness, signals a dimming of a fundamental human quality. The book addresses this directly by using a deep understanding of the syndrome to frame an approach to delirium care.

Dr Rahman’s focus on delirium (to say ‘interest in delirium’ would not acknowledge how profoundly important he sees delirium care) was born out of a moment of clarity: his first experience of delirium in a loved one. That despite undergraduate and postgraduate study of brain disorders at world-leading institutions, his professional training in delirium had been minimal. That clinical staff didn’t have the tools to recognise delirium presentations. That no-one was able to explain to him why it was happening and what to expect next.

We are reminded of the power of stories. This story is about someone who had specialist knowledge on frontotemporal dementia, who became a patient in his own right, and is emerging again as a healthcare professional. Truly an expert by experience.

Shibley and I were first in touch on social media. Looking back at those messages from almost two years ago (Twitter DMs end up being a nice record of conversations), we both keenly felt a need to do better on public understanding of delirium and advocacy for delirium patients. We met in real life when he came for a clinical attachment at UCLH – and by then this book was well its way. Since then, we have been proud to have him as part of the MRC Unit for Lifelong Health and Ageing at UCL and look forward to continuing our work together.

The nature of delirium

We know that the neural circuitry of the prefrontal cortex, striatum and thalamus is complex in humans and other primates. The various loops have been discussed much before, but have rarely been considered in the context of delirium.

I suggest that this is surprising for a number of reasons, but not least because the manifestations of delirium are so diverse, including cognitive, affective, behavioural, motivational and motor components.

If we think that some brains are more susceptible to an insult, causing a cascade of events which we ultimately recognise as delirium, the question is – which?

The concept of ‘pre delirium’ has been envisaged, perhaps older people with cognitive impairment who might be particularly vulnerable to disaster arising from acute  shocks such as infection. But we don’t know what these brains have in common which make them so vulnerable. We don’t know anything, yet, of the time course of the long term cognitive impairment which follows after delirium. And most significantly we don’t know whether this is tied up with particular pre-existing problems. For what it’s worth, I think the pre delirium will be revealed by unusual risk taking, rather than a mild amnestic syndrome.

It’s also a problem how these problems are evidenced. I remember clearly during my Ph.D. how patients with early behavioural variant frontotemporal dementia, along with profound changes in personality and behaviour, could turn up to clinic with a normal range of neuropsychological testing – and even normal brain scans. This is a cautionary tale, because I argued that the chief locus of dysfunction early on was the orbitofrontal cortex, an area of the brain notoriously difficult to image.

We undoubtedly need to know basic information about which patients develop different subtypes of delirium, and what precisely the natural histories of these delirium episodes are, But the orbitofrontal cortex for me still remains a likely culprit in delirium for reasons which are not easy to pin down. The delirium “response”, specifically hyperactive delirium, appears primitive. It looks very disorganised, fast, and more to do with the lower order functions than higher order ones. That’s why it’s for me fundamentally driven by the disorder in attention, arousal and motivation – before the cognition. This is akin to Daniel Kahneman’s ‘Thinking fast and slow’, and its evolutionary significance.

If then you believe that delirium is a pretty low-level behavioural response, it is sensible to focus our attention on what one of the more primeval parts of the brain is actually doing. A paper to be published in tomorrow’s Nature reveals that there are neurones in the orbitofrontal cortex which as populations code for specific characteristics.

I feel how the brain responds to risk both in the internal and external environments is fundamental to the behavioural response of delirium.

Look at the abstract of the Nature paper:

Individual neurons in many cortical regions have been found to encode specific, identifiable features of the environment or body that pertain to the function of the region. However, in frontal cortex, which is involved in cognition, neural responses display baffling complexity, carrying seemingly disordered mixtures of sensory, motor and other task-related variables. This complexity has led to the suggestion that representations in individual frontal neurons are randomly mixed and can only be understood at the neural population level.”

The question really then becomes transformed to: what is driving delirium and what evolutionary advantage, if any, has it conferred? Being unable to ascertain accurately the level of threat or risk in the environment might lead you to stop eating, attack people verbally or physically, or move around excessively. We know nothing what turns on and off the switch called ‘delirium’, and we don’t know even why and how long term neural damage might take place. Most importantly, we don’t know precisely – and currently – which persons are particularly susceptible, and why. Short of doing detailed neuropsychological testing and brain scans in a large number of people about to develop delirium for the first time, my concern is that we might never know the full answer.

Reviews of my synthesis of the evidence on integrated care in dementia (or the dementia pathway)

In 2018, I published my review of the evidence for components of the ‘dementia pathway’. I included ‘caring well’ which had been omitted from the NHS England scheme by name.

32.

Since publishing the book, I have experienced this pathway because my mum has advanced dementia.

My synthesis is here.

The reviews for my book included the following.

‘This is a complex and difficult journey and Dr Rahman’s book is like having an informed, interested, intelligent and profoundly humane friend by your side on the journey through. This book is a friend that is encyclopaedic in knowledge and who is not afraid to have opinions and to express them. We are part-way along the journey, we have come a long way but we have far to go. This book helps us reflect on where we are and the road we have travelled, all the better to plan and travel the road ahead.’
– from the foreword by Sube Banerjee, Professor of Dementia, Brighton and Sussex Medical School

‘Dr Shibley Rahman sets out what is best practice in language and attitude as well as care and support. He writes with great authority and humility about what people who have dementia, and their loved ones, face and how we could all do a great deal more to help them…This is a wonderful book, for students, health professionals, researchers, policy makers, politicians, families, and for people who may be in the early stages of the diseases that cause dementia. This is a book that challenges but also gives hope. Which I think is the greatest gift of all.’
– from the foreword by Lisa Rodrigues CBE, writer, coach and mental health campaigner

‘As a nurse, specialising in the care of people with dementia, and those who care for and support them, this will be a ‘go to’ text; for reference and for revisiting important topics relating to practice…This book is an important milestone in the Dementia Care literature as it provides information to help us answer the difficult questions we face as professionals helping to support people and families.’
– from the Afterword by Lucy Frost, Dementia Lead (Nurse Consultant)

‘The third of Rahman’s books on issues relating to dementia. Another must-read text that discusses the many and varied elements of what is required to enhance the lives and wellbeing of people with dementia. I particularly like his style of telling us what we can expect to learn from each section and suggestions for further reading. This, as well as the first two books from the author, is an essential read for all health and social care students in gaining an overview of caring in dementia’
– Dr Karen Harrison Dening, Head of Research & Evaluation, Dementia UK

‘Shibley Rahman’s last book in his trilogy on dementia represents a comprehensive and thought provoking tour de force through the subject matter – great reading for any health and social care professional, academic and interested lay person. Here is a perspective from an author who in himself integrates academic qualifications in medicine, law and management with a lived experience of disability. A unique read!’
– Reinhard Guss, Chair, Faculty of the Psychology of Older People

‘Practitioners, family carers and people with dementia looking for a comprehensive resource about dementia need look no further. Few books combine detailed explanations about clinical aspects of dementia with policy analysis and yet remain so centred on people’s individual experiences. This is an important resource for anyone who wants to understand more about providing better dementia support.’
– Jo Moriarty, Senior Research Fellow, King’s College London

‘An absolute gem of a book. Through his career, Shibley Rahman has been sequentially academic neurologist, service user, family carer and blogging activist. His learning and wisdom have been distilled into a highly readable, comprehensively referenced and bang up-to-date companion for anyone who needs to learn and understand about people with dementia and what can be done to help them, their families and professional carers to get the very best out of life.’
– Robert Howard, Professor of Old Age Psychiatry, University College London

‘There can be no doubt that Enhancing Health and Wellbeing in Dementia should be essential reading for anyone with an interest in improving the lives, and rights, of people living with dementia. It is an important book which is both comprehensive and practical – no easy matter to achieve! His encyclopaedic span concludes appropriately with the primacy of person-centred approaches, the importance of dignity, quality and leadership – yes, yes, yes!’
– Des Kelly OBE, Chair, The Centre for Policy on Ageing

‘Shibley’s voice has emerged as an important one to take notice of within dementia care. His ability to draw together a huge range of knowledge from many different spheres of research, practice and policy and to use it to light our way rather than confuse us further is unique.’
– Prof Dawn Brooker, Director of the Association for Dementia Studies at the Worcester University, UK

‘This important book continues our journey of what it means to see the person beyond their diagnosis of dementia, with a fresh focus on freedom, dignity and human rights. Dr Shibley challenges the idea that nothing can be done to improve dementia care. He brings practical thinking around how we can move towards truly integrated, person-centred ways of working – making a timely and valuable contribution to our collective understanding.’
– Dr Helen Sanderson, author of Person-Centred Thinking with Older People

‘Great book on integrated, person-centred dementia care. Clearly identifies issues often overlooked: importance of relationships in delivering good care; pivotal role of care homes in caring for people with dementia; and value of addressing staff needs so they can be in good relationship with others. It’s not rocket science!’
– Julienne Meyer CBE, PhD, RN, RNT, Professor of Nursing: Care for Older People City, University of London, Executive Director, My Home Life programme

Mild cognitive impairment. Time to stop feeding the beast.

Mild cognitive impairment has been presented as part of a pre-dementia syndrome:

“In 2011, a new classification includes the dementia phase (AD), the symptomatic, pre‐dementia phase known as mild cognitive impairment (MCI) and an asymptomatic, preclinical phase.”

And what’s there not to like about a prodromal phrase lasting decades amenable to intervention through promoting brain health?

This is motherhood and apple pie.

Strictly speaking, we are all ‘pre-death’.

As Dr Alan Watson rightly points out,

The science about MCI is poor. In fact, it has the hallmarks of a ‘pseudoscience’.  People fall for it.

As commented previously,

“Bold statements in multi-syllabic scientific jargon give the false impression that they’re supported by laboratory research and hard facts.”

Around 2012, there was an almost toxic pressure from higher powers to increase the number of diagnoses of dementia, at the same time that social cuts were starting to ravish the system.

Even in the early hours of propagation, ‘fake news’ spreads differently from real news within a matter of hours. The clear graph which shows the progression from amnestic mild cognitive impairment to dementia is clearly presented in September 2008’s “Alzheimer’s disease: Unraveling the mystery” from NIH is shown at a number of conferences, itself not being cited. Strikingly, the text which accompanies this graphic does not itself come with supporting references. As such, it is a piece of marketing rather than research.

Let’s unpack this text:

“Researchers view it as a series of events that occur in the brain over many years. This gradual process, which results from the combination of biological, genetic, environmental, and lifestyle factors, eventually sets some people on a course to MCI and possibly AD. Other people, whose genetic makeup may be the same or different and who experience a different combination of factors over a lifetime, continue on a course of healthy cognitive aging.”

The graph shows a continuity between MCI and AD. The statement says little more than saying that genetic and environmental factors can contribute to a clinical state – well, blow me down, who knew?

By February 2019, one research group had been compelled to publish,

“In population studies, most individuals with mild cognitive impairment (MCI) do not progress to dementia in the near term, but rather remain stable MCI or revert to normal cognition. Here, we characterized MCI subgroups with different outcomes over 5 years. MCI subgroups with different 5-year outcomes had some distinct characteristics suggesting different underlying causes. The progressors, unlike the reverters, had a profile broadly typical of Alzheimer’s disease; the stable MCIs had other, including vascular, morbidity. These data shed light on the heterogeneity of MCI in the population.”

So we know that not all MCI leads to dementia, and there’s no effective proven intervention for stopping MCI becoming dementia anyway. Some of this ‘MCI’ is actually misdiagnosed Alzheimer’s disease. There are powerful forces at play who want to sell monitors of cognition and interventions.

This has been seen all before, in the discussion of the evolution of diabetes via prediabetes:

“In medicine, prevention is usually an unalloyed good. But in this case, other diabetes specialists argue, medical and epidemiological data give weak support, at most, for increasingly dire prediabetes admonitions. “Nobody really thought at the time, how ‘pre’ is prediabetes for all these people?” says Kahn, who left ADA in 2009 and is now at the University of North Carolina in Chapel Hill. The World Health Organization (WHO) in Geneva, Switzerland, and other medical authorities have rejected prediabetes as a diagnostic category because they are not convinced that it routinely leads to diabetes or that existing treatments do much good.”

It’s as if we selectively ignore the evidence that doesn’t fit the MCI narrative – the Dunning-Kruger effect.

There’s also an element of the “sunk cost fallacy“.

“And it means that if people have put their weight behind a belief, they are invested in it, and are likely to fight its corner.”

Remember the non-continuity of MCI to AD for most people with MCI. This doesn’t stop WHO implying that cognitive interventions can prevent progression from MCI to AD, even though it can triangulate this argument by arguing that promoting good health might prevent dementia ultimately. Look carefully at the wording of their policy document, which still assumes MCI is a valid concept to begin with.

I am concerned that the diagnosis of ‘mild cognitive impairment’ is merely a holding operation, for a state of uncertainty by a clinician who can’t make his mind up about whether a person has dementia or not, even after taking a history, doing an examination and performing appropriate investigations.

This state of uncertainty is not particularly reassuring to the patient or those around the patient, and may indeed be a cause of distress.  It is hard to know when would be a good time to re-assess the patient. The access to clinical trials for persons with “MCI” can get mixed up with the access to clinical trials for persons with “dementia”, adding noise to the signal of datasets.

By going for this ‘fudge’ approach, it’s denying that some of these individuals have a completely different diagnosis, which deserves specialist input in the alternative – like functional neurological disorders, for example?

Having a diagnosis of MCI has questionable benefits:

“While MCI diagnoses are likely to increase, given the new guidelines, its aetiological and clinical heterogeneity have prompted questions about whether a diagnosis of MCI can be accurately differentiated from normal ageing and whether the potential consequences of being associated with Alzheimer’s are worth the questionable benefits offered by the current pharmacological treatment options and social services available”

MCI is a very distinct group from dementia. This is also a big problem as regards how representative the ambassadors of dementia are.

Take for example,

Individuals with mild cognitive impairment with very minimal impairment of activities of daily living who are able to blog and travel to conferences on their own can be very different in needs to people with dementia who are in incontinence pads, can’t swallow or can’t remember their children.

Time to tame the beast.

 

@dr_shibley

None of the key geriatric issues which have affected my mum have operated in isolation

The BGS Autumn meeting concluding in Leicester today surveys the latest scientific research and the best clinical practice in care of older people. Our ageing population is stimulating extensive NHS service redesign to deal with the challenge of caring for larger numbers of older people both in and out of hospitals.

I feel there’s been a renaissance in our appreciation of many fundamental issues – such as what happens and why when an older patient is left languishing in bed for days on end, such that he can lose a significant amount of muscle bulk. Or, why for example frailty, delirium and dementia can interlock in fact into one big jigsaw, and this has profound implications, for example, for effectiveness of clinical care. And whisper it quietly none of these clinical topics is an island. They have never operated in isolation in affecting the life journey of my own mum.

One of the contributors to the meeting is Dr Amit Arora.

Dr Amit Arora has been a consultant geriatrician in the North Midlands since 2004. His clinical interests include all falls, dementia, frailty, multiple medical conditions, comprehensive assessment, and other conditions related to ageing. 

He has served as Chairman of the England Council of the British Geriatrics Society, Deputy Chairman of the Medical Specialties Committee of the British Medical Association, Regional President of the BMA, and has been an advisor member for the Disability Living Allowance Advisory Board in England.. He chaired the West Midlands Quality Review Service for people living with dementia advising commissioners and provider organizations and is the current chair for the Frailty Standards. He is also the clinical lead for NIHR CRN: Ageing for West Midlands. He has a keen interest in National and International Health quality and policy for the ageing population and has contributed internationally.

Amit has also written a brilliant  after word for my book ‘Essentials of delirium’ to be published next year:

Delirium as a medical condition has been known for years; however, it has somehow frequently remained under-recognized, under-diagnosed, and under-treated until recently. Delirium is typically a hard subject to tackle but this book handles it brilliantly from start to finish.

This book is intended for the workforce, wherever they are practicing in the world, but is equally important for patients, families and carers. It covers both simple and complex issues related to delirium and these all are well explained. Whether readers are interested in emergency presentations, detection, risk factors, differential diagnosis, various measurement scales, or post-delirium effects, the book covers them adequately. The book also explains prevention, predictive models and different approaches to dealing with delirium.  These are topics which may be of use to all healthcare professionals.

This book should prove useful to all members of multi-disciplinary teams in various settings, including the hospital, community and care homes. The book is relevant not only for clinicians, but also for policy makers and managers. Shibley’s passion and understanding of the various aspects of the patient’s well-being beyond the disease itself is clearly apparent and challenges one to think differently.”

This is an extract only. The full piece will appear in the book.

Random contributions