Thank you, Dementia Community
I really enjoyed the Congress this year. Great venue…lots of space, good straightforward food, loads of coffee…so much so I was awake half the night! But that’s my fault!
What I value so highly about Congress is meeting so many people in person, having hugs, and just all the smiling. It is a place to rekindle friendship, warmth and enthusiasm, so we can start again in January with new energy.
It was very noticeable how few people with dementia attended this year, or presented. Keith and I can speak all day long, but we should have more experts with the experience of living with dementia speaking on subjects. Perhaps that is our fault, for not promoting ourselves and our cause, but let’s find a way of addressing that for next year.
It was of course noticeable how small a presence Alzheimer’s Society had…not surprising after their awful, shockingly bad film.* Perhaps they are learning a lesson. And it’s such a shame because a lot of the information on their website is really helpful and well organised.
I look back and wonder how many good sessions I missed…you can’t attend them all. I do wonder about the one (where I was on stage) about how to describe behaviours that carers find hard to deal with.** I think there are more important things to put right than how to dance on the point of a pin. Let’s just describe what the behaviour is, not whether it is challenging or whatever. Whatever it is, the cause is usually unmet need, and that is what we should be working to understand.
Next year I would like to mount an exhibition of art by people with dementia. Alongside the poster display. Or even better in the middle of the main area. That would place us where we should be, bang in the middle of all these discussions and analyses.
Thank you all of you who have worked hard to out the show together.
And I echo your call for support. Why don’t we all (if we can afford it) buy life membership?
Congress is and must continue to be the annual event which galvanises us all to another year of activism and sheer hard work.
George Rook
Chair of LEAP, the Lived Experience Advisory Panel, Dementia UK
Chair of the Shropshire and Telford Health Economy Steering Group
X: @george_rook
Blog: https://georgerook51.wordpress.com/
Additional information from the Editorial Panel
*This is Dementia Community’s latest Statement on The Long Goodbye.
**This refers to the Day 1 UKDC panel discussion on the BPS guideline term ‘Behaviour that challenges’ and the question, ‘Can we find a better term, acceptable to all?’
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