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 drugs ‘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. Sperling 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

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

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

[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

[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

[23] Gordon, P. The diseased Other 

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

[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