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Words are both beautiful and terrible things. Using words like ‘mellifluous’ or ‘Christmas cake’ brings to mind a whole set of associations and images. On the other hand, words are used to spin the web that is the stigma around dementia. Like any powerful medical treatment, they have both beneficial and adverse effects. Language is at the heart of dementia. Impairments of language are common early features in conditions like Alzheimer’s disease – people have difficulty finding words for things, they use common rather than less frequent words, they struggle with people’s names. (We all do, of course, it’s a matter of degree!)

Susanna Howard and Kate Sweeney are leaders in the field of connecting words and people living with dementia, though they come with different perspectives. Susanna takes literal quotes from her participants and the end product is often a book that is shared and celebrated with the person who has written it. She has a clear methodology and there is a training to work with this method. Kate comes as an artist and emphasises the need for the art to come first. For her, art is where it takes place which means that you have to be there to witness it. Therefore other forms of evidence, such as photos or even videos, are unsatisfactory. At the centre of both approaches is a recognition of the need to listen, to be still, in the moment, and to accept what comes forth. ‘Escaping from memory’ and ‘let the medium speak’ were key messages.

The audience, more accurately the invited members of this workshop, wanted to talk about the nature of evidence and evaluation. There are some real constraints with working in this area. One practical issue for the artists is that they often don’t control the environment (for example, in a care home) or even the number of people who attend their group. Examples of residents pressing to queue up to take their turn with ‘the Listening Lady’ or dozens turning up for a group meant for eight people. There’s a considerable tension between the research environment, where a health paradigm prevails, so ‘interventions’ have to reduce ‘symptoms’ or improve ‘behaviour’ or ‘quality of life’, and the artistic endeavour where ultimately perhaps no ‘outcome’ is required at all. Kate Sweeney makes the point that in the mainstream of life, people don’t ask the question ‘What is art for?’ in the way they used to. But asking it in relation to dementia has somehow persisted.

Towards the end, we started to talk about professionalism and this raises questions about how this emerging field perceives itself. There are now quite a lot of arts practitioners offering various types of experience. They are obviously highly skilled and there is a corpus of knowledge even though there are many individual approaches to the work. The ethical framework is starting to be discussed too. How does the corpus of practitioners inform itself and to what extent are they regulated, other than by their success in winning contracts? Definitely something for future discussion.

7th April 2016