“Truth telling and dementia”

Alistair Burns, National Clinical Director for Dementia, has arranged a meeting for the 5th June 2013 to discuss the diagnosis of dementia as much debated of late in the BMJ. The title will be welcome to all: “Timely diagnosis of dementia: integrating perspectives, achieving consensus[1]”. I have not been given the opportunity to offer my perspective, but if I had, it would have been to express my confusion. This confusion of mine is about policy that has, since the announcement of this meeting, been rolled out. On the 25th April, the Department of Health (under Minister Norman Lamb) released a policy for England “Improving care for people with dementia[2]. There is no mention at all of timely diagnosis in this policy which continues to advocate “early” diagnosis.

When I was training as a psychiatrist, 20 years ago now, the consultant I worked for asked me to give a talk on ‘Truth telling and dementia” – the context then[3], I now reflect, was very different to today.

“Truth telling and dementia” is a subject that requires revisiting in light of this recent debate. In recent years it would seem to me that my specialty has lost perspective of the epidemiology and evidence which reveals that cognitive change with age is complicated and not always progressive. At the millennium turn we still talked about “aged-related memory loss” but also had the vital understanding that memory loss in age is not inevitable[4]. There has been no scientific evidence in the intervening years to suggest that this approach was wrong; yet now we appear to have reached a stage where all memory loss in age risks being labelled as early dementia or early Alzheimer’s disease. To me, this is not truthful. Nor is it truthful to allow any misunderstanding of the efficacy of available treatments as being anything other than symptomatic.

It is only necessary to look at the list of “declared interests” in any correspondence regarding this issue to identify the close links between the medical profession and the pharmaceutical industry[5]. These links are of course essential to further our shared goal of continued innovation in medicines development. I am however concerned that as a profession we risk repeating previous mistakes. Professor Banerjee in his report: The use of antipsychotic medication for people with dementia[6] found that of the 180,000 prescriptions for people with dementia overall, 140,000 were inappropriate; this is around two thirds of overall use of the drugs for people with dementia. He also found that antipsychotic drugs have been used inappropriately in all care settings. Reducing the use of antipsychotic drugs for people with dementia is a national priority in England[7] It has been my experience that these medications were heavily marketed for use in people with dementia, often using the technique of using “opinion leaders” within the profession to provide “continuing medical education” to their peers.

To me the truth is in the evidence. It is my earnest hope that the planned meeting of the 6th June 2013 “Timely diagnosis of dementia” will be guided by evidence and truthfully represent the complexity of memory loss in age.

This is an initial DRAFT of a rapid-response that I will be sending to the BMJ.

[1] This meeting was drawn to my attention by Dr Iona Heath

[2] Department of Health (England). Improving care for people with dementia. 25 Apr 2013 

[3] G. Pinner & W. P. Bouman What should we tell people about dementia? APT September 2003 9:335-341; doi:10.1192/apt.9.5.335

[4] J. T. O’Brien Age-associated Memory Impairment and Related Disorders APT July 1999 5:279-287; doi:10.1192/apt.5.4.279

[5] Alistair Burns et al, BMJ, 21 March 2013.

[6] S. Banerjee The use of antipsychotic medication for people with dementia: Time for action. A report for the Minister of State for Care Services, 3 Oct 2009

[7] Department of Health (England).  Living Well With Dementia: a national dementia strategy, 3 February 2003

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