Pippa Kelly shares her thoughts on Open Forum Events’ Dementia: Innovation conference, which took place at the Barbican Centre, London on 3 July 2014.
Conferences can be dry old places. To be honest, they’re not normally my thing; I’m not great with statistics, flip-charts and power point presentations.
I am, however, keen to raise awareness of, and reduce the stigma still surrounding, dementia. Because my mum had it. And looking back I can see that I didn’t appreciate (when it mattered) what I could have done to make her life a bit better. Perhaps, in her case, I couldn’t have. I’ll never know for sure as she’s passed away now, but because of my family’s experiences I “get” dementia.
Not everyone does. And without me realising it, it’s become my mission to help others to understand what dementia is – and what it isn’t (it’s not part of the natural aging process for a start) – and how in small but important ways we can all help those who have it to live their lives as well as they can.
So off I went on the hottest day of the year so far to a dementia conference at the Barbican in London. Power point presentations were thin on the ground. In their place was a shared passion, among audience and speakers, to discover and explore innovative ways to enhance the lives of those with dementia, to promote best practice and to pool fresh ideas and initiatives.
I hope I always choose my words carefully and if I had to sum up the day in two or three, passion would be foremost among them, closely followed by inspiring and hopeful.
In the spirit of disruption that Gill Phillips of Whose Shoes? embodies to such positive effect, I’m going to start at the end of the conference when, for me, the PechaKucha session – and one of its panellists in particular – gave a whole new meaning to the word hope.
For those who don’t know (I certainly didn’t), in a PechKucha session each speaker has just six minutes to present 20 slides with 20 seconds per slide – terrifying is the carefully chosen word that springs to mind here. I couldn’t even pronounce the name of this particular form of torture, let alone contemplate participating in it.
Ken Howard had no such qualms. Aided and abetted by Gill Phillips he spoke fluently and wittily about the sort of innovative care and support he’d like to see in the dementia field. Ken should know. Following his dementia diagnosis eight years ago he was plunged into depression, only pulling himself out of it with the realisation that although everything had, in one sense, changed, in another he was still the same person.
What Ken really wanted at the time of his diagnosis he now realises, as he told us at the conference – and as he tells everyone he can as he tours the country campaigning for it to become the norm – was an immediate post-diagnosis chat with someone else living with dementia. How simple is that, how obvious – and how relatively cheap.
Ken, of course, is perfectly placed to make helpful, positive, meaningful suggestions. And therein lies the secret of this particular conference and why (unlike so many others I’ve attended) it left me elated rather than exhausted. The reason it worked so well and was so full of passion, hope and inspiration was because it had at its heart – not in a tokenistic, meaningless way but in a genuine way, ie they were not only there but had starring roles – those with dementia and their carers.
Dr Trevor Jarvis is 73. He doesn’t look it. He has vascular dementia. You’d never have known it to hear him: he’s a born public speaker – sharp, witty and irreverent. “My head’s a shed” he began. “When I go to get the tools out I can spend twenty minutes looking for something before I find it. That’s how my brain is”. It was a clear, concise description of what life with dementia is like for him. Trevor’s call to us all was “Life is for living: live your life. If I’d known then what I know now, I’d have gone out more”.
Having heard what Ken and Trevor had to say, I was struck (as I invariably am) by how much those living with dementia have to teach those of us who aren’t.
Another natural public speaker (though, endearingly, she doesn’t seem to know it) is Suzy Webster. I’ve followed her on Twitter for long enough to gain an insight into her kind and giving personality and to glean that she lives with her husband, her two young daughters and her mum (who has dementia) and dad.
In the flesh she is one of those rare people who, though quietly spoken and understated, has the power to move you. She told us how, two years ago, her mum and dad moved in with her and her young family so that they could have the dementia “adventure together”. It was simply put, yet behind the words lay endless reserves of love and courage.
In the few minutes Suzy spoke we all discovered much of what it is to be the day to day, hour to hour, minute to minute carer of a parent. “There have been a lot of steep learning curves,” Suzy told us. “But some fabulous moments too – and I have learnt so much from my five-year-old and my eight-year-old. They just see my mum; they don’t think about who she was before and what she might be at the end.”
Suzy said that her children were lucky to have her mum, and vice versa, and that the values of caring were being instilled into her girls. She told us how the local GP had become her mum’s care co-ordinator. “He knows little about dementia but he knows the family and he has set aside a regular six weekly appointment for our family, to be used by any of us”.
I could go on at length about Suzy Webster, mother, carer and daughter extraordinaire. I could go on about the clever way dementia communications specialist Sarah Reed got us all talking to each other about our past through, of all things, sweeties and front doors. I could tell you about Tim Lloyd-Yeates, founder of Alive!, a charity dedicated to bringing stimulating activities (often involving iPads and other modern technology) into care homes. Or about Susanna Howard, the creator of Living Words, whose staff work on a one-to-one basis, recording the words of people with dementia in care homes to produce publications and, more importantly, significant responses – such as the heart-catching, “Words go but you hear me” – from residents.
I could also tell you about the many other very genuine and informative speeches, including those given by Susie Hewer, an erstwhile carer for her late mother who lived with dementia, and by Baroness Sally Greengross, chair of the all-party parliamentary group on dementia, who gave a rousing opening address.
Or I could describe how, as the day wore on, a large illustrative mural appeared outside the main conference room as if by osmosis (I believe it had something to do with Sarah Reed and her REAL communications team). It depicted ideas generated from the conference in graphic form that could be easily understood by all, including those whose dementia makes it more difficult for them to read. Magic.
I could tell you about all of these things. But blogs are personal accounts – which is perhaps why I like writing them so much – and, for me, the real stars of this particular Barbican show were the people with dementia and their carers. Suffice to say that when Suzy Webster spoke everyone at the conference was hearing the words of someone offering her mother the very best in dementia care. She was inspirational in the true sense of an overused word. As were Ken Howard and Trevor Jarvis. In fact, after the conference I overheard someone describe Ken as hope personified. As a lover of language, I like that – a lot. I think Ken would too.