“In the driving seat”

A commentary on recent BMJ rapid-response submissions by Burns et al on the subject of dementia.

By Dr Peter J Gordon and Dr Sian F Gordon, 6th April 2013

We would like to comment on Burns et al’s response to Brayne et al’s rallying call for an evidence-based approach to dementia and related policy development. Three areas interest us in particular: the “early” versus ”timely” debate; the role of evidence; and how best to avoid harm.

1. TIMELY:
We are delighted to see that Burns et al state that, when approaching the diagnosis of dementia, “most people ‎now agree that “timely” is a better way of describing what is trying to be achieved[1].” However, at the same time Burns et al draw attention to the 2012 All-Party Parliamentary Group (APPG) report on Unlocking Diagnosis[2]. Baroness Greengross introduces this report as follows: “Evidence heard by the APPG highlights just how important early diagnosis is.” In the body of this report the word ‘early’ appears forty times in total whilst the word ‘timely’ is mentioned four times.

We would suggest that it is now time to abandon the use of the term “early diagnosis” altogether, to limit the confusion already caused by its overuse.

2. EVIDENCE:
Burns et al repeat one stark statistic: “the estimated 400,000 people with dementia who do not have a ‎diagnosis.” However this statistic is extrapolated from data which is now nearly 20 years old[3]. It is the research currently being undertaken by Brayne and others which should guide our practice. 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 is why evidence-based medicine must be the foundation of good practice.

3. HARM:
Burns et al reassure us that “by putting clinicians in the driving seat of any clinical ‎assessment will protect individuals against any inappropriate intervention¹.” We have limited faith in this approach for two main reasons. The first is that, however well-intended, clinicians are subject to a wide range of influences, whether these be personal, external guidance from politicians and charities, or what is traditionally considered “conflict of interest” . The debate regarding “early” versus “timely” is a case in point, where until very recently only the potential “benefits of early diagnosis” were aired. The second is that this particular issue has such profound implications for such a large proportion of the community that it cannot be left to “doctor knows best”. This debate really needs to have a multidisciplinary approach including public health, sociologists, the medical humanities, philosophers[4] and a complete representation of society, not just those with dementia, their carers and doctors.