Only now

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.”[1] This was less than a year after I gave an interactive talk based on one question: “What do we mean by Alzheimer’s disease?”[2]

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.[3]

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.

Mgt Chan on dementia Dec 2013

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.”[4] 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”.[5]

They-don't-stop-dementia-fr

[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[6]. Our patients deserve better. They deserve truth. We surely all need to do better with that cherished and high ideal of informed consent.

[this has been published in the BMJ as a letter 7 April 2014]

[1]Scientists want G8 countries to quadruple funding for dementia research within 10 years Published 5 December 2013  BMJ 2013;347:f7282

[2] Richards, M & Brayne, C Analysis: What do we mean by Alzheimer’s disease? Published 12 October 2010 BMJ 2010;341:c4670

[3] 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

[4] Chan, M. WHO Director-General addresses G8 dementia summit http://www.who.int/dg/speeches/2013/g8-dementia-summit/en/

[5] Alzheimer Society film:  http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1629

[6] 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

2 Replies to “Only now”

  1. Hi Peter–I have a couple of points on your letter–modifying disease and improving outcome are two different issues. Those marketing the current AD drugs don’t say they modify disease (though I’m sure many members of the public dont’ understand this.) And I don’t think you do yourself a favor by citing only the AD2000 ref from 2004. Clinicians think these drugs work not necesssarily for cognitive ‘benefit’ but based on studies they’ve seen that show they put off time to admission to nursing homes (based I believe of observational studies) and help with behavioral measures. Pretty much all pharm sponsored studies and lots of fiddling with endpoint choice and study designs.
    Basically I think you could do more to full this out and perhaps make it into a larger piece. If it doesn’t fly as a letter and you want to consider filling it out w/ a co-author from across the pond –we could talk about. I have hated watching AchEs & memantine and am afraid we may see the same pattern of development & marketing of useless drugs with the upcoming amyloid agents
    Also, I recently published an update for lay people on dementia in a Health letter put out by advocacy organization Public Citizen. It can be found at: http://www.citizen.org/healthletter
    I’d be happy for you to share w/ you’re followers if you like.
    Susan
    (And I have Perspective piece on overdiagnosis coming out Mon in JAMA Int Med

  2. Hi Susan,
    I think I agree with nearly all you say and thank you for taking time to write.

    This had to be a short letter and I agree my third reference was not sufficient.

    I also agree that “improving outcome” and “disease modifying” are not the same thing. I guess we both understand that these can be difficult to define and do not necessarily mean the same thing to everybody.

    There is so much more that needs developing in this and I would be delighted to co-author with you in a longer piece.

    Can you send me your perspective piece when it is published. I would love to read it.

    I will send this by e-mail also so that you have my contact details.

    aye Peter

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