More than three months have now passed since the G8 dementia summit was held in London and this perhaps allows a little more time for critical thinking over its most laudable aim to “create disease modifying treatment to try to stop, slow, or reverse the condition.” This was less than a year after I gave an interactive talk based on one question: “What do we mean by Alzheimer’s disease?”
In my talk I presented what evidence told us about currently available “anti-dementia” drugs, that as yet, there is no conclusive evidence that these modify disease or improve outcome.
In sharing this worldwide and robust evidence with my audience of health professionals, many seemed to exhibit furrowed brows and looked at me as if I was an “outlier”. During and after my talk, the evidence that I had presented, was challenged by a number of those who attended. These drugs, they confirmed, in their understanding, did modify outcome and that is what they told to patients. It was further explained to me, after my presentation, that this was the “prevailing” understanding.
Leading world experts established at the G8 Dementia Summit that there was no evidence that these existing drugs modified disease and the World health Organisation Director-General Margaret Chan summarised this for G8 in the following way “in terms of a cure, or even a treatment that can modify the disease, we are empty-handed.” Following the G8 summit, Dementia Ambassador, Fiona Phillips, explained in a film she appeared in for the Alzheimer’s Society that “current treatments don’t stop dementia from progressing”.
[click anywhere on above image to see the latest Alzheimer’s Society film]
This story seems to reveal that my profession was perhaps not following evidence but rather wishful thinking and indeed mythology. I am left wondering why this happened and why actual, world-wide, meta-analysis evidence, was not properly shared with patients. It also occurs to me that that industry, politicians and national leads seem to have made little effort to challenge this “prevailing understanding,” at least until the “anti-dementia” drugs had largely come off patent. Our patients deserve better. They deserve truth. We surely all need to do better with that cherished and high ideal of informed consent.
Scientists want G8 countries to quadruple funding for dementia research within 10 years Published 5 December 2013 BMJ 2013;347:f7282
 Richards, M & Brayne, C Analysis: What do we mean by Alzheimer’s disease? Published 12 October 2010 BMJ 2010;341:c4670
 Courtney, C et al (2004) Long-term Donepezil treatment in 565 patients with Alzheimer’s disease (AD2000): randomised double-blind trial. Lancet 363(9427), pp. 2105-15
 Chan, M. WHO Director-General addresses G8 dementia summit http://www.who.int/dg/speeches/2013/g8-dementia-summit/en/
 Alzheimer Society film: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1629
 Rahman, S. Who were the biggest winners and losers of the G8 dementia summit? Survey of 88 persons without dementia. March 29, 2014 http://livingwelldementia.org/2014/03/29/who-were-the-biggest-and-losers-of-the-g8-dementia-summit-my-survey-of-88-persons-without-dementia/World Health Organization