Recruitment for dementia research
This analysis paper (1) struck a chord with my recent experience regarding the recruitment drive for dementia research. There is a focus on this area, perhaps amongst other reasons influenced by International Dementia Summits and the intervention of our own Prime Minister (2).
Research into the pathologies of dementias is undoubtedly very important. As a professional involved in the care of those currently living with dementia, I also want to see research into ways of helping individuals to live well with dementia.
The authors’ identification of five areas of difficulty in “informed choice” has crystallised for me the issues that concern me about the recruitment process for dementia research.
The pathological basis of Alzheimer’s disease (considered as the leading cause of dementia and therefore the focus of most research) is far from certain (3) and the worldwide research community is recognising this with a shift of focus towards understanding the risk factors involved in dementia. Judging from the contents of the information leaflets I have seen, researchers have found it difficult to convey this uncertainty and to clarify the difference between risk and disease to potential trial participants. The concern I have is that research looking at preventive strategies may be confused by participants as investigating cures for established disease.
There are also longstanding problems, across medicine, of research criteria being adopted in a clinical environment before their clinical utility has been established (4). Again my concern is that this is not being adequately communicated to potential trial participants. This also applies to the community of healthcare professionals who are being asked to support research (5).
The research and clinical communities need to work together to ensure that we take account of the above challenges and to direct our inevitably scarce resources proportionately.
(1) Johansson, M., Jørgensen, K. J., et al. Analysis: “Informed choice” in a time of too much medicine—no panacea for ethical difficulties. BMJ 2016;353:i2230
(2) Cameron, D. The Prime Minister’s Challenge on Dementia. Policy paper Published 26 March 2012 https://www.gov.uk/government/publications/prime-ministers-challenge-on-...
(3) Ballard, C. et al. Alzheimer’s disease, Lancet 2011 Mar 19;377(9770):1019-31
(4) Le Couteur, D.G, Brayne, C. et al. Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis. BMJ2013;347:f5125
(5) Gordon, P., Gordon, S. Letter: Confusion is everywhere. BMJ 2013;346:f511
Competing interests: I have petitioned the Scottish Parliament to consider introducing a Sunshine Act for Scotland: http://www.parliament.scot/GettingInvolved/Petitions/sunshineact