This debate was part of the Northern and Yorkshire Autumn Conference of the Royal College of Psychiatrists and was held in Durham, on Friday 26th September 2014.
The motion was worded as “This House supports the early detection of dementia”.
For the motion was Professor Clive Ballard. Below is the biography he supplied for the printed programme:
Against the motion was myself. Below is the biography that I supplied for the printed programme:
In what follows I will present the slides and the text of my spoken words that were given with each slide of my main argument. Opposing debaters were confined to a ten minute argument so unfortunately a vast subject like this has inevitably had to be reduced. In my argument I decided that it was most important to concentrate upon definitions, evidence and ethics.
Just before you read my presentation [as given on the day] I want to offer my sincere gratitude to Dr Tom Hughes, Academic Secretary (Northern & Yorkshire RCPsych) for being a perfect host and most balanced Chair. I also want to offer my thanks to Prof Clive Ballard for debating this difficult subject with me and for his professional and gentlemanly manner. Whilst we disagreed most significantly on this motion I am certain that Prof Ballard is of the same view as me that this is a complex matter and not one for a simplified approach. I also want to thank the RCPsych organisers: Eva Davison, Division Manager, and Leanne Lane, Divisional Administrator. Both Eva and Leanne were most helpful and the meeting was organised with most professional care.
My argument against the motion [as I presented it on the day]:
I am grateful to have been invited here today to oppose the motion: that this House supports the Early Detection of Dementia.
My name is Dr Peter Gordon and I have worked over the last decade as a Consultant in Psychiatry for Older Adults in NHS Scotland. I have had a longstanding interest in the issues surrounding early diagnosis
I hope to explain to you why a timely approach to the diagnosis of dementia is preferable
It is perhaps important that we try and establish definitions for the key words in this motion.
Let us deal with DEMENTIA first. You will be familiar with internationally accepted definitions for dementia. The essential features being that this is a clinical syndrome that manifests with SIGNIFICANT cognitive and functional impairments across a RANGE of DOMAINS of assessment.
For the remainder of my ten minutes I am going to address what we mean by “EARLY” and then lastly consider what we mean by “DETECTION”.
It has been said that “Early Diagnosis is Everywhere”.
In 2012 The Westminster All-Party Parliamentary Group published its report: Unlocking Diagnosis. In this report the focus was that on EARLY diagnosis of dementia. The word timely was not used once.
Scotland’s National Dementia Strategy included the early diagnosis of dementia.
Instrumental to Strategy in Scotland was HEAT Target 4. All NHS Boards in Scotland set about ensuring that this early diagnosis target was reached.
At meetings similar to this one today, around this time (2011 onwards), we were presented with new criteria for diagnosing “early Alzheimer’s disease”, including the use of biomarkers:
The new Lexicon offering definitions for Alzheimer’s disease were quickly criticised. A report in the Lancet said of DUBOIS criteria: “but they proceed as if such biomarkers are already available. Moreover, the presence of biomarkers must not be confused with the disease itself. Thus, this new framework for Alzheimer’s disease might represent a Tower of Babel rather than a coherent Lexicon.”
Since 1962 we have had 12, yes 12 different terminologies for mild cognitive impairment. No matter what we call it, we have not yet found a way of accurately predicting which of these people will go on to develop dementia:
Continuing the theme of definitions. It has been suggested by some academics and clinicians that early diagnosis “is simply screening rebranded”.
To complicate matters even more, policy makers have drawn a distinction between “screening” and “case-finding”.
The World Health Organisation has clear definitions of screening. Drs Wilson & Jungner defined screening through a set of ten criteria. This specifically applied not just to population screening, but also to case-finding, opportunistic and specific target groups.
This is criterion number seven:
“The natural history of the condition, including development from latent to declared disease, should be adequately understood”
A few years back, in the BMJ, Marcus Richards and Carol Brayne asked “what do we mean by Alzheimer’s disease?” This is a question that I would contend that we do need to consider how ever obvious it may sound, and in particular for our most elderly old.
“In its most common late onset form, the term Alzheimer’s disease is unlikely to refer to a discrete neuro-pathological entity..”
“but to a diffuse clinical syndrome that represents the gradual accumulation of risk factors over the course of life”
Professor Carol Brayne’s Team are researching this area.
NEITHER the US Preventative Task Force NOR the UK National Screening Committee recommend cognitive screening as there is “insufficient evidence to assess the balance of benefits and harms”
The “intuitive and nearly religious belief that early diagnosis is a good thing has not gone away: government and charities now lobby to promote early signs of disease and to “educate” primary care doctors”
My main concern is that “unlike in screening, the concept of early diagnosis generally has no intellectual framework, rigour, or systematic reviews”
Nearly all policy leads have justified “early detection” as case-finding.
There has indeed been much debate on what constitutes case-finding and what constitutes screening.
The main difference is that there is an internationally-agreed definition of screening with a specification of ten criteria which must be fulfilled before any policy can be recommended.
Screening thus considers the potential for harm whilst case-finding does not.
This is the cover from the BMJ when they launched their too much medicine campaign.
There is certainly a risk that we might over-diagnose “early dementia” given remaining uncertainties about pathological basis for dementias.
In the current BMJ Professor Illife states “subjective memory complaints are a poor predictor of dementia syndrome … a case finding method that misses most cases is an unusual choice.”
This has not stopped the Alzheimer Society in their push that Policy should be based on Case finding. Their Chief Executive goes further and has stated that “Case-finding is not screening”. Unfortunately this view is diametrically opposite to that of the World Health Organisation
This is the recent voice of one “old man”, J K Anand a retired doctor
“I want my doctors to treat me when I seek their help instead of wasting their time looking for abnormalities that they have neither the time nor the ability to alleviate”
Last year this paper was published in our Yellow Journal. It covered ethics.
I would just like to highlight the following:
- Risk of making a diagnosis too early or too late because of reasons related to differences in age- or gender-related disease frequencies
- Risk of making inappropriate diagnoses related to varying definitions of mild cognitive impairment
In a 2011 study by the Preclinical AD Workgroup, it was found that “out of 126 cognitively INTACT people with mean age of 83.7 years at death”
“post-mortem found that 53 out of 126 or 43% had pathology of pre-clinical Alzheimer’s disease”
Thus the risk of over-diagnosis in our most elderly is very real. 1 in 2 of our cognitively unimpaired elders could be wrongly labelled with Alzheimer’s disease.
Research has actually been around for some time that confirms the risk of mis-diagnosis, for example PALMERS study, the Path-through-life study and this study, the 2007 InDDEx study which concluded:
“the overall rate of progression from mild cognitive impairment to Alzheimer’s dementia in this randomised clinical trial was much lower than predicted”
Published recently in the BMJ Open was this study looking at CSF biomarkers and MRI brain scans as potential biomarkers. They found that “after the administration of a brief test of memory, MRI or CSF does not substantially affect diagnostic accuracy for Alzheimer’s disease in patients with mild cognitive impairment”
Delayed diagnosis concerns me but the response to this should be to aim for a timely diagnosis. The risks with “early” detection are mis-diagnosis, over-diagnosis and ultimately the potential for services to be so stretched that those who most need help, those with dementia, are disadvantaged. This is known as inverse-care.
This is my last slide. It is my view that a lot of care and support can be provided for those living with dementia and that you can live well with dementia. Let us care even if as yet we cannot cure. This is why I support timely diagnosis of dementia. The evidence and ethical base for “early detection” has not yet been made.
To learn of the result of the debate please click here