The dementia conference is dead! Long live the meet up.

Fran O’Hara, Pam Luckock, Chris Roberts and Jayne Goodrick, about 15 people with dementia, at least 15 family carers, various people in various disciplines in dementia care including the third sector promoting living better with dementia, and other interested parties, proved it this week.

The dementia conference is dead. Long live the meet up.

We got off to a flying start. There was no ‘conference dinner’. We instead all sat where we wanted to in a rectangular circle (you get my drift). My best friend, Chris Roberts, sat next to Jeremy Hughes. I was about to take a photo of Chris talking to the person on his right, whom he really liked a lot, until I realised it was Jeremy. And I thought I’d leave Jeremy in peace – he is after all the CEO of the Alzheimer’s Society!

I adore Prof Bob Woods – his advice to Chris when he left on the last day was, “Watch out for this man!” (laughing, but pointing at ME). Bob is basically an encyclopaedia, but very nice with it. I mentioned to Bob how in fact I was citing him during my own PhD – which was a very long time ago. Bob said, “Good! Cos I started when I was 5.”

I asked Bob whether he ‘believed in’ meaningful activities – “very much so – they’re better than meaningless activities” came the reply.

I can’t really explain it – but there is a huge bond and solidarity when friends of mine living with dementia meet up and their closest ones. You can’t ‘fake it’.

Kate Roberts, Chris Roberts and Jayne Roberts did a wonderful initial session. In a brilliant talk (and it was apparently totally scripted by her), Kate (=Chris’ daughter) included, “Mum is my rock and Dad is my hero.” You could hear Jayne’s voice croak audibly with emotion.

I won’t give the ‘game away’, but George Rook gave a wonderful talk on the communication and disclosure of the diagnosis from a patient’s perspective:

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Agnes Houston’s work, discussed too by Donna Houston, was a real hit. Agnes said it had all been possible through people with dementia giving up their precious time, and with generous support from the Life Changes Trust. You see Agnes MBE is the best – Agnes will be going with family to Buckingham Palace on 18th December 2015 – and I’ll be supporting from afar.

Olwen Williams gave a very good mini-speech on a topic which I have a strong interest in – the “Future Hospitals” initiative from the Royal Colleges of Physicians, which looks at the rôle of the hospital in an integrated person-centred care system which sees people in the right place, right time and right way.

Really loved chatting with Ruth Eley for a long time for the first time. Am a big supporter of TIDE, to support family carers (like I was of the previous Dementia Action Alliance Carers Call to Action). Had a lovely chat too with Louise Langham who is the best too. Anna Gaughan, Jean Tottie and Pat Broster were of course supporting on Twitter. Good luck to the book some of them are involved with on life story – I am sure this will be an unique high quality contribution next book to be published by my own publishers of “Living better with dementia”, Jessica Kingsley Publishers.

This meeting was not as good as a conference it was much better. There was a completely flattened hierarchy – that means people who weren’t catalysts or officers in change. People addressed people as people. Simples.

There was mutual respect for other people’s background and experiences, diverse and substantial. People with dementia and closest were pivotal in the table-top activities in co-producing dementia care pathways.

Isabel and John were amazing in their graphic and technical support for their event.

The token slot for the person with dementia or carer was discarded (which often makes the situation of engagement and empowerment worse in fact.) There was no shitty question answer session where the ‘selected few’ asked their questions. No – we all had a chance to contribute.

5o% of the places of this meet up were free of charge. All people with dementia and carers were offered a chance to attend for free.

And we got a lot done.

See – it is possible!

Loved Llandudno and North Wales in general.

Well done to “Framela”, Chris and Jayne (see a previous blogpost for the full programme).

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  • Donna Houston

    Thank you Shibley for all your knowledge, support and most of all friendship, to people with dementia and their carers. The Meet up was fantastic and everything you said was true and more important I believe true connections and pledges were made. I cannot wait for the report and video that will be produced by Fran and Pam. So all the good conversations and ideas will not be lost and can be shared. Good things are happening in North Wales. Next meet up Glasgow, Scotland PLEASE.

  • Ian S Rickard

    Re: Demetia meet up, Llandudno.
    My name was down for this “conference” but despite my best efforts I was unable to attend. The feedback though is very good.
    Please include me in further invitations. Thanks