Couldn’t wait to meet Geordie Sinatra, so I went to the opening performance at Live Theatre. The central character, suffering from dementia with Lewy Bodies, was really engaging and had a great voice. I was delighted that there were plenty of Sinatra songs; the audience just couldn’t help joining in at the end. I don’t want to give away too much about the story, the characters or the set – because everyone will want to see it – but it was a great evening.
The play reminded me that dementia is just one fragment in a family’s life but often it will often overshadow everything else. This is partly because the services and care are inadequate, partly because the condition is misunderstood but mostly because we just don’t know how to deal with it.
All our social norms and conventions, our day-to-day interactions, depend on short-term memory and rules about acceptable behaviour. Somehow we learn not to tell the truth when some one asks ‘Does my bum look big in this?’ Something tells us the right time and place to shake hands or to have a hug. Dementia teaches us that those social ‘norms’ don’t work for everyone: for many people who are shy or have mental health issues or learning difficulties or on the autism spectrum, it is impossible to navigate the minutiae of socially acceptable behaviour.
Coincidentally, as the play opened, there was a conference in the North East about dementia for health professionals. to share best practice, ideas and explore how dementia care can be improved for people living with the illness in the region. This was enough to get Jonathon Miles, from BBC Radio Newcastle interested in the subject. Jonathan tackles the issues of the day in his own unique way in a two hour programme each morning. One of the scientists we have worked with, Elizabeta Mukaetova –Ladinsky, myself and Fiona Evans who wrote Geordie Sinatra were all invited in for a chat last week.
Jonathon was charming and for an hour we talked about our own experience of dementia in the family, the dementia-writing project, the play, the wider question of social care and even wider questions around mental health issues.
It was fantastic that dementia was the focus of such media interest but I still felt a minor frustration that the emphasis always ends up being about the quality and cost of care. It seems to me that we need to stress that each person who happens to have an age related medical condition called dementia is still an individual. Each one still deserves the same positive attitude as the trendy footballer who breaks a leg.
Throughout this project, Fiona, Rebecca and I have been astounded at the wit, the personality and the amazing views of older people with dementia. When I asked one older woman if she was interested in the Queen’s Diamond Jubilee, she gave me quite a shock when she replied that she didn’t give a damn for royalty and what had they done to deserve to have their arses wiped by someone else!!
Older people with dementia might not care too much about what they say but they can teach us about honesty, living in the moment and being truthful with one another.