Re: Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis
Martin Brunet (Rapid response 31st October) adds an important point to the timely and perceptive critique of dementia policy and practice by Le Couteur and colleagues (1). The apparent under-diagnosis of dementia in general practice is presented as a problem needing urgent solution. In my experience few are interested in why diagnoses rates are low. Contrary to the rule of no intervention without a diagnosis, remedies and targets are proposed and pursued energetically.
I suggest eight reasons why there is a diagnostic gap. Changes in thinking, memory and behaviour are not recognised as significant by the individual experiencing them, or by those around them, who may normalise changes as being part of ageing, due to life events or expressions of the personality. Symptomatic individuals may not accept that anything is wrong and resist further investigation. General practitioners may misattribute changes to ageing, well beyond the point of plausibility. General practitioners may protect symptomatic patients from a stigmatising diagnostic label which could place them on an escalator into disability; in doing so they will protect themselves from the consequences of mislabelling. General practitioners who believe that there are few resources to support their patients with dementia may be slow to diagnose. In some patients diagnosis may appear to make no difference to care, or may perversely worsen it by blocking access to rehabilitation or threatening residency in a care home. Memory clinics may have long waiting lists, which lengthen as demand increases. And finally, a formal diagnosis may be made by a specialist but not get recorded in a way that is captured for the Quality & Outcomes Framework reporting.
Different combinations of these (and other) factors may occur in different contexts, making local understanding important. This is not necessarily how the NHS works. The over-emphasis on diagnosis may divert resources away from much-needed community services, in another turn of the Inverse Care Law. Sceptical GPs will be vindicated if low-level support for patients early in the disease course, or palliative care for those at the end of life, fail to meet their needs whilst memory clinics seek extra funding to deal with their backlogs.
(1) LeCouteur DG, Doust J, Creasey H, Brayne C Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis BMJ 2013;347:f5125
Competing interests: Associate Director of the Dementia & Neurodegenerative Diseases Research network; recipient of grants from the NIHR and European Commission for dementia research; member of the Alzheimer's Society