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Conferences in dementia: a non person-centred industry out of control?

Conferences in dementia can be good fun.

For the conference organiser, conferences can be a good way of showcasing recent policy contributions and to promote their brand as a fundraising organisation whilst raising money at the same time. Delegates can ‘mingle’, or ‘network’, seamlessly meeting each other in professional and social disciplines.

At worst, they are open to extreme nepotism, of the same people being invited to give the same talks to largely the same audiences. This croneyism can be exacerbated with entities such as local authorities or the NHS pay for the ticket on behalf of the delegates. The business model is made complete where people can nominate themselves for awards which they can win, meriting a place at a gala dinner for an award he or she can win or lose. But no matter, being nominated is good publicity for all, including care home chains.

At best, conferences arguably ease a degree of knowledge sharing and transfer not easily possible through blogs or papers. However, they disenfranchise people who do not have the time or resources to attend.

Some of the prices are completely eye watering.

Look at this event, “Strengthening dementia services” in Melbourne.

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Speakers, often including people with dementia to tick the box for inclusion, are frequently not paid for their time, though might be have travel and accommodation to and from London via Australia paid for a for short talk. Remember this is dementia we’re talking about, where the NHS and social care funding (and many staff) are on their knees.

A major theme in policy about services is person-centred care; this is respecting the person and individual, rather than as a objectified recipient of care.

This is another example of a dementia happen yet to happen where communication in a person-centred way will be important.

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I had a discussion of this on Facebook with three others (A, B and C; denoted by purple, red and green squares in the timeline below). I have anonymised their identity for the legitimate purpose of mitigating against breach of confidentiality.

The issue is whether the billing should read: “Person living with dementia (invited)”.

Discussion as follows.

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There are other ways of democratising conferences, such as live streaming conferences in live time.

I attended this last year, not a ‘conference’ but a ‘meet up’, with true co-production in the meaning of it (i.e. not marketing but social organisation); and I can strongly recommend this.

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  • Norm Mac

    Incredibly well written blog Shibley, so true and too the point, well done !!

    • wellbeingdem

      Thanks Norman. Hope you’re ok – best wishes, shibley.

  • Steve Milton

    Hi Shibley

    We certainly cant afford to go unless invited to speak. Not to the big ones anyway. In my experience a lot of the really good stuff takes place away from main stage which does indeed suffer from ‘same old same old’ a lot of the time.

    To clarify – my response (im purple guy) was not to the question whether a billing should read ‘person with dementia’ but whether or not the decision not to name someone was inherently wrong. Basically in my view it depends WHY the person is not named.

    There is still a long way to go to make conferences as accessible as possible – notywithstanding that by and large they are put on by money-making organisations – but we should also acknowledge that progress has been made. Ten years ago there were very few people with dementia attending conferences let alone speaking at them – and we are in a different place now. Yes, there may be some inclusion box-ticking going on – but done properly thats not nexessarily a bad thing either if it gets a foot in the door and people used to the idea that including people is an expectation.

    Note I say ‘done properly’ – by which I mean giving people the proper support they need to engage – not leaving people without help with transport or wayfinding being one very common failing – just ask Keith Oliver or Wendy Mitchell about that one………

    I was at a regionalk DAA meeting in the spring of this year – and there was a speaker with dementia I know well who was clearly beginning to struggle with speech and concentration – but she was given time, had support from a buddy, and the audience listened carefully to what she had to say. That struck me as a real move forwards – and we must increasingly look to how we support people who need more help to be involved, and crucially, to STAY involved – not be discarded once they are not so easy to include. (and we both know that happens too)