By David Jolley
The 14th Dementia congress was held early in November 2019 at Doncaster Racecourse. We were there two years ago for an impressive meeting, notable for the excellent signage which had been designed by people with dementia. The signage was good again – as was much else.
The opening debate asked us to consider the issue of truth telling and in particular the pros and cons of design features in Care Homes which aim to produce an impression of being elsewhere: ‘environmental lies’. Many of us did not understand this terminology without explanation, but it was certainly good to be directed to the report from the Mental Health Foundation which has examined the issue in detail https://www.mentalhealth.org.uk/publications/what-truth-inquiry-about-truth-and-lying-dementia-care
The words ‘lie’ or ‘lying’ carry moral judgement – ‘a false statement made with the intention of deceiving’ (Chambers Dictionary). This tortured an otherwise sensible and sensitive discussion towards one which felt like a contrived conflict with some purists seeming to object to any décor which might bring residents, visitors or staff to feel the false comfort of a library wall (wallpaper), a street scene or bus stop. Having visited many people in their own homes, I have been endlessly surprised, entertained and amused by the variety of ‘mock-ups’ which people produce within their own homes: a church interior, a garden, public bar and so on. To describe such creations as lies seems absurd to me. They are well intentioned and intend to help people relax, be diverted and to live their lives, not to bamboozle them or make fools of them.
But what came over powerfully from the interchanges was the quality, commitment and caring credentials of the people who had gathered here.
Later in the evening gave change to share reflections and plans with Barbara and Jude over a wonderful meal at the Earl of Doncaster – All Art Deco – Living the lie if there was one.
Breakfast with Maria brought an update on the progress which has been made through the realisation of the power of the arts for the benefit of people with dementia and their carers – and for the rest of man and womankind. https://creativedementia.org/about/
I caught some of the Early Bird Wednesday morning session with Kim Wrigley and others describing developments in Greater Manchester with Dementia United: http://www.gmhsc.org.uk/news/dementiaactionweek2018/
In the gap before the main plenary session I went up to the Royal Box to check it out ahead of our Early Bird session there on Thursday. Situated on the fourth floor, the room and balcony offer a fabulous view of the racecourse and beyond. I was surprised to find Vivienne Depledge of Dementia Adventure out there on the balcony. She told me something about the work of her organisation and its belief that time in the outdoors is essential for good health. She implored me to hold our Thursday morning session on the balcony. This might have been interesting but the weather on the day argued against it.
The plenary session, led by Ron Coleman, Wendy Mitchell and members of tide (together in dementia every day) was inspirational. Jeremy Hughes had been delayed on his train journey, so Dawn Brooker held the Chair. The session had a title something life: ‘I believe in the benefits of new technology – however.’ We heard Wendy telling of getting used to a tracking system which regularly told her family she had taken off to China. We heard Ron, who comes from the Isle of Lewes (population about 1,000 – everyone knows everyone. We don’t lock our doors). He has an understanding wife and a special relationship with Alexa. The combination allows him to remain in the driving seat – but prepared to hand the steering wheel to others when needs be. ‘Technology without humanity does not work’.
We heard about Zoomettes: www.dementiavoices.org.uk/group/zoomettes/ Mondays at 5.30pm for ladies with dementia to talk on line.
We heard of Deepness Dementia Radio www.deepnessdementiaradio.com/
More inspiration – and massive admiration for these people.
We had no visit from a government minister – all bound to election duties. Jeremy Hughes arrived and gave a brief eulogy for the work of the Alzheimer’s society.
Professor Payam Barnaghi www.surrey.ac.uk/people/payam-barnaghi told us about ground-breaking work using machine technology – Just bewildering to the likes of me, but we will be pleased to make use of the discoveries when they come to us.
What a great start.
I watched videos produced by Dementia UK https://www.dementiauk.org/?gclid=CjwKCAiAh5_uBRA5EiwASW3IanXzruUJ1UGVZdoRvq77m-lEefsuLxATnh97Ft5-P-1dT0StJ1odrRoC0IEQAvD_BwE
These include an animation giving information for children and another which features interviews with young people who find themselves as carers of parents or grandparents.
And I met more people. They told me about their work – and also about themselves.
The Tom Kitwood Memorial Lecture was Chaired by Alistair Burns and delivered by Steven Sabat Treating people with Alzheimer’s: The non-pharmacological approach. | OUPblog
He is a sensitive, perceptive and caring man. He was clearly moved by the shared spirit of the congress. His humility called for the same from all of us.
I had gone back to the Truth seminar. This was not confined to décor but focussed on communications verbal and nonverbal and included references to Tom Kitwood’s observations on approaches which are helpful to people with dementia, and others which can be destructive. It was a good session and encouraged us to access the report – we will.
Lasting memory – a quote from a man with dementia:
‘If you treat people with brutal honesty, they will remember the brutality’.