Dementia seems to be replacing cancer as the unmentionable disease. Until quite recently, people were reluctant even to use the word ‘cancer’, a fearful reticence that surely increased suffering and preventable deaths. Today, Professor June Andrews, of the Stirling Dementia Services Development Centre (DSDC), says people would rather learn that they have cancer than dementia.
The incidence of dementia is growing because more people are living into their 80s, 90s and beyond. A woman who lives to the age of 90 has a 50% chance of developing dementia. But that word covers a host of diseases, with different causes and treatments and equally varied experiences for those who have them. Cancer is no longer seen as monolithic: we need to recognise the complexity of dementia as it comes to affect more of our lives, directly and indirectly.
The Dementia Friendly Arts conference, held yesterday at macrobert arts centre in Stirling (Scotland) showed how much artists are beginning to remake the image of dementia by working with people who have the condition. Changing perceptions is not always a primary concern of their work, which is about creating life-enhancing experiences for people with dementia, but that is often the result.
‘You Said You Liked the Dancing’
Janice Parker’s dance film, made with members of a dementia support group in Stirling and Martin Clark, is a case in point. Over a period of just a few weeks, she engaged a group of men and women in the creation of a beautiful performance, made to a soundtrack of Leonard Cohen’s ‘Dance me to the end of love’. The song acquired a new and profoundly moving resonance in this context, expressed in the movement of the performers.
Other inspiring examples of artwork in a context of dementia were presented at the conference from poetry groups by the Reader Organisation to Drake Music’s workshop programmes; from Spare Tyre and Artlink to work in Calderdale Hospital, the diversity and quality was exceptional. A Skype link with Carrie McGee in New York, in which she spoke about MoMA’s outstanding work in securing to access by people with dementia, worked despite Sandy’s after effects on the city. But equally impressive were the contributions of many conference participants, each with their own experiences in the field and many insights into practice, ethics and art.
Strikingly, many of the speakers were anxious to stress the limits of their knowledge and expertise. Few claims were made about the quality or effectiveness of the work there was a consistent humility in the face of the lived experience of dementia. I had the impression of being among people who were on an important and sometimes frightening journey of discovery in which their principal resources where their artistic practice, their integrity and their acceptance of the constantly changing landscape they were in.
I came away with new understanding and new perceptions, most of which need more thought. But I was also reminded how, as in all arts work with people, the good artists learn from those they work with. And one of the things that can be learnt from working with people who have dementia is the fundamental importance of the present, lived moment, the actual experience whose quality alone can be influenced, here, now. And that is one of the things that make art and dementia such natural companions.