In the March for Science on April 22, 2017 across the world, we were entertained by hilarious placards and a surprise appearance from Dr Who. The scientists and researchers came out to defend the idea that knowledge based on research conducted by experts has a high value and is under attack. My favourite placard was “alternative facts are the square root of minus one”. And yes, I did have to look that one up.
In the world of dementia, we’ve got big post-truth problems. The current culture frames debate through an appeal to emotion. What’s on TV? The personal tragedy of a celebrity affected by dementia in a relative. There is repeated assertion of talking points where the evidence is slim to say the least. For example, art gets endlessly presented as a treatment for dementia, even if the intervention is brief, unmeasured and can scarcely be described as art. Even if the artist doesn’t believe it, they need to say it, because arts funding requires them to demonstrate social worth, even more than artistic merit.
In the current framing of dementia, rather than investigating the facts, some things are taken as read and people get uneasy or even angry if you challenge those “truths”. When first used about politics, “post-truth” referred to the cosy ordering of debate as a spectacle, run by rival expert PR and communication teams. Debate would be narrowed to a small range of issues selected and pushed by them.
In dementia you can see a similar framing of the perception of dementia by professionals. Not professional clinicians, but professional communicators. We see this in the numbers, the responses, and the policies. The increase in numbers is insistently emphasised by advocacy communication teams, who are relatively coy about the fact that the prevalence and incidence is dropping. Government and advocacy organisations push the creation of dementia “friends” as a significant response even in the face of human rights violations and government failures to act which are scarcely mentioned. The fact is that people with dementia don’t need “friends” with a thirty-minute awareness programme under their hat, as much as they need diagnosis, and ways of finding cash to pay for their care. One UK model of post diagnostic support was punted world-wide as a significantly beneficial care policy and taken up by other countries on the basis of the promotional puff about it, even though in fact the uptake was less than 20% and hadn’t been evaluated.
People in the world of dementia continue to repeat their received truths, even if those are found to be wrong by independent experts. As Michael Deacon said about “post truth” in politics, “Facts are negative. Facts are pessimistic. Facts are unpatriotic.” Utopian upbeat campaigning dominates, and people who raise inconvenient facts are disparaged for scaremongering. When describing the evidence of serious risk for people with dementia in a general hospital and the protective measures that families could usefully take, I get angry protestations from people who accuse me of needlessly arousing public fear. I’m seen as negative, pessimistic, and yes, even, unpatriotic. And when criticising the gatekeepers who decide to conceal diagnosis from patients, I’ve been denigrated as an ivory-tower-so-called-expert in social media and beyond.
PR specialists in the charity field know how to manage perception and belief just as well as those in any less admirable area. They target opinion formers (heard the one about the advocacy organisation boasting how they “stalk” politicians?). News outlets repeat each other’s stories. For a reporter, having someone copy your story and repeat it is a badge of honour, even if the story is wrong. For a journalist, upsetting the spokesperson managed by PR risks that they won’t speak to you again, and where will you go for comment then? A reporter told me her editor made her do a dementia story, even though it was misleading, because if they didn’t print it, someone else would, and that would put them behind in the game. It’s some game - abusing people with dementia and their carers with false tales of miracle cures in the name of infotainment.
Last year, in the UK, a government politician Michael Gove said, “I think the people of this country have had enough of experts.” It was good to see the experts - the back room people in many cases, coming out to challenge that.
I make my own plea for science. People affected by dementia need evidence based information about what can make a difference to their quality of life. We need to reframe the public perception of dementia in line with what we know to be true, rather than what we’d like to be true. As a professor promoting the public understanding of dementia, I don’t claim to be the only person who knows the truth about dementia and I try to gauge the level of evidence for what I say. But at the moment I feel like the only person independent enough to say so, in the face of a tidal wave of bilge coming over the side of the ship.
*David Mikkelson, co-founder of fact-checking website Snopes.com, on debunking