Dementia Case-Finding: language and ethics

On the 3rd October 2013 I was invited as one of the speakers at the Royal College of General Practice Annual Conference in Harrogate. The Debate was in the main auditorium and was entitled “GPs and the Dementia Challenge”


Fellow Speakers included:


The Debate was chaired by Dr Peter Deveson, GP.

We each had only a few minutes to present our argument. I presented the following ten slides (giving a perspective of experience in Scotland of incentivised case-finding) and finished by showing a short film made by me called “Fighting Talk”.

In a vote of hands after the debate the vast majority expressed concern about case-finding of Dementia and the Dementia DES (as it was then proposed).


Here is my presentation:


Language used in dementia discourse is important.


As well as the fear that this kind of language generates in the general population and particularly the elderly it can also colour the relationships between policy makers and health professionals. As an example here is evidence given to the All Party Parliamentary Group on Dementia by the Head of Mental Health for the Scottish Government



This has been our experience in Scotland  which was a TARGET set in 2011 by Geoff Huggins encouraging the early diagnosis of dementia as part of a case-finding initiative in response to concerns about under-diagnosis. My experience has been that we have created a climate of fear in our elderly of being identified by cognition alone, and where the only possible route of maintaining autonomy is to avoid contact with NHS Scotland


Sube Banerjee, Professor of Dementia, University of Sussex, is a passionate advocate of proactive agency.

He said that the language of “screening” was unhelpful, but that it was “cruel to allow inaction to continue”

And that early diagnosis is crucial to end “toxic uncertainty” for both patient and family

Again this demonstrates the language being used.


Recent opinion does seem to have shifted from early diagnosis of dementia to timely diagnosis of dementia, however my concern is that Government policy lags behind here. For example, in the body of this report the word ‘early’ appears 40 times in total whilst the word ‘timely’ is mentioned 4 times.


There has been a lot of argument about the language of screening versus case-finding. Jeremy Hughes, the Chief Executive of Alzheimer’s Society, who is fond of military metaphors himself, has stated that case-finding is not screening,


Not everyone would agree. In a recent article in the International Journal of Clinical Practice Dr Chris Fox gives his view of the Direct Enhanced Service for Dementia:

“This new initiative is effectively a mixture of population screening and case finding despite the clearly articulated lack of recommendation for population screening reflecting the lack of robust evidence for either”


The important thing really is whether the Dementia DES will benefit patients. There is obviously a concern that it will divert already limited resources away from those most in need and also raise false hope for medical treatment even though the benefits of current drug treatments are small.

Despite there being a widely-held “folk belief” that drugs can modify the progression of dementia evidence shows that at best there is a small symptomatic benefit.

The problem is that we do not really know the balance of risk to benefit as so little research has been done on the potential harm associated with screening or case-finding. To “put the policy cart before the research horse” risks repeating the mistakes of the past in so many areas where an intervention which intuitively seems to be a “good idea” is later proven to cause significant harm.

This DES proposal reminds me of the Royal College of Psychiatrists’ 1992 Defeat Depression Campaign. Far from relieving the suffering of vast numbers hitherto hidden, many people with milder depression, which might have been self-limiting, were medicalised.


To conclude we must remember that cognitive impairment is not synonymous with dementia. Cognition has a continuous distribution in the population, which changes in a continuous manner across the life course in older populations – as there are no clear delineations between abnormal and ‘normal’, most very old people will have some impairment.

I finished my presentation to the RCGP Annual Conference, with this very short film:


To play this 1 minute long film please click here.