please pay

Conferences for dementia or simply "give us your money"

When I told an events officer at an event on government policy in London recently that I literally could not afford to go to the conference, as I was not employed, I was told I did not qualify for a discount. But I was told to consider still going ‘as it was a great chance to network’. I decided not to go.

Actually it happens that I know quite a bit about the literature in dementia policy both here and abroad, so I know exactly who’ll be worthy of featuring in my final book on dementia – and who won’t.

I am not vindictive, but I have totally become underwhelmed by conferences. Like political conventions, speakers tend to be uniformly on message, with about as much conviction of a newsreader. The questions/answers, if they exist, are very constrained and are not a decent forum for discussion.

I actually don’t know what the business model is in offering the same speaker in engagement and empowerment in dementia or neuropsychopharmacology every time you go to a conference, regardless of venue, year or month.

It would make much more sense to rotate various speakers. For example, if a presentation is based on empirical data, it might be good for members of the research team to take turns in presenting findings.

Last week, I moaned about why I had not been given an opportunity to participate in a meeting in London. As it happened, the social media presence of the meeting was totally non-existent bar a handful of bland information-giving tweets.

I was told that should I wish to secure attendance at future events I should get my publishers to produce a stall where I could exhibit my and other books.

I am totally wholly convinced that dementia conferences are barely educational, in that there is nothing you discover there which you couldn’t discover from a good Google search. As for meeting people, I think it’s a long time – if it ever existed – since the days when one would arselick to get the equivalent of an internship or similar.

And the people running the events tend to be entirely clueless too. I have found many of the experiences similar in pleasantness to ringing a call centre in asking for a refund for an “off” pint of milk.

Where is the equity in people who can’t afford to go to dementia conferences, but who are striving away, not being able to contribute?

More importantly, though, what about the inequity of having an expert in engagement and empowerment or dementia friendly communities take up a slot at the expense of someone actually living with dementia who is very keen to present? This mistake has happened on very many occasions, to the point that it has become common practice.

When I recently commented on the social network Twitter that it was the ‘same old same old’ people in our dementia conferences, I was uniquely advised by somebody in Canada to go to Canada where it was also the ‘same old same old’ people – but different people.

This does not seem like a bad idea – taking, effectively, a sabbatical from conferences. But I can achieve the same by simply not going to conferences.

I don’t get it why the same field of dementia, like failed biomarkers, makes an appearance at the same conference every year, and yet my own field living better with dementia or quality of life never gets a look-in.

I was recently told that people living with dementia, who I think have much to offer in terms of their unique life experiences, can only ever appear at some of these conferences once. Wtf? Is this for real?

As it happens, I think the business model of dementia conferences is entirely sustainable, as it is, to all intents and purposes, not a meritocracy – but a “chumocracy”.

So it’s time to stop this profit making chumocratic racket – it is now a formidable barrier to forming policy.

But seriously – we should have an open debate about the ethics of dementia conferences, as well as the business model. Is it right that some speakers with big grants appear so regularly, with the same backing from the same publishing companies, so they utterly crush all intellectual opposition?

We can do better than this.

Rant over – and breathe.

Share This:

  • Lynda Henderson

    Totally agreed Shibley. Our Kiama Alliance considered forking out some contributions to send Dennis, our DAG chair, and/or me, to one of these. We all agreed that it would be outrageous to kowtow to the wealthiest service providers, whose services are the focus of many events, rather than on the needs of PWD.
    On another note, I was very interested in attending a recent research conference. Like you, I’m not employed. I discovered that there were some freebies put aside for people like me, but that this fact hadn’t been advertised by the leading organization in Australia (bloody typical). Lucky for me that I knew one of the organizors.
    Anyway, we’ve had 3 recent wins re the lived experiences of PWD being finally included; NeuraFrontier’s upcoming meeting on FTD will now include Dennis, Veda and me, yesterday’s regional dementia forum finally included Dennis talking about the Kiama project and his impressions of the community, as well as Veda being on stage with me for a “carers session” (of course she was the centre of attention & got all the audience questions!) and we have stipulated that all community awareness sessions will include at least 1 person living with dementia or, if they’re not able to, video clips of local PWD talking about what matters to them.

  • the freebies aren’t available to me