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On the train home from Nottingham to Bristol last week I finished The Iceberg: A Memoir by the artist Marion Coutts.  This extraordinary and devastating book describes the dying from a brain tumour of Coutts’ husband, art critic Tom Lubbock, a loss that is given heightened poignancy by the fact that the tumour also robbed writer Lubbock of words, the tools of his trade. It whittled down his vocabulary day by day, almost hour by hour, until eventually he was unable to connect objective meaning to linguistic constructs and all verbal communication was gone.

What happens to your sense of self when words and meaning disengage? How does the absence of language, or its disruption, change the way others interpret you? These are, of course, particularly live issues in dementia. They were also very much in my mind, as I had just organised a seminar on Words and Dementia at which Susanna Howard of Living Words and artist Kate Sweeney presented complementary perspectives on their work in using words with and for people living with dementia.

As a former English student, copywriter and editor, I am drawn to discussions around sense-making and making sense in relation to language. It was intriguing to hear Sweeney and Howard give quite different interpretations of the ethics of what might be described as an editorial role in the dementia context - whether as a faithful reflector of the words as said, or as an artist recognising the value of words as inspiration for further artistic interpretation. Sweeney highlighted the beneficial elements of the arts-dementia partnership for the artist, describing it as an opportunity to look for indexical linguistic forms in which words can become pointers towards interpretation rather than direct conveyors of meaning.

Howard’s work with Living Words serves as powerful testament to the potentially de-stigmatising effect of co-created artworks, drawing attention to the strengths and abilities of people living with dementia to communicate, to be creative and playful with language and to produce works with meaning. Kate Sweeney noted a definition of creativity from author-philosopher Rudolf Steiner: “Any action done consciously is creative” as an invitation to re-consider not just the nature of ‘creativity’, but also ‘consciousness’.

In my current role, as a PhD student looking into the methodological challenges involved in developing the evidence base for the arts and dementia, I was intrigued by the direction taken during the discussion after the presentations. Those attending were particularly eager to engage in questions around ethical issues and the barriers faced by practitioners in evaluating and reporting the outcomes of their work.

For me, the word ‘value’ provides a useful lens through which to focus thinking and even to understand why we do anything in life. Perhaps as part of an evaluative reflective practice, arts practitioners might want to consider the following three questions, either from a personal perspective as artist, or from that of an artist working specifically for the benefit of people living with dementia:

• What do you perceive as valuable about the activity or creative process you use?
• What is it within the particular activity or process you use that might enable this value to be realised? Looking deep and in detail – what are the ‘active ingredients’?
• How can you tell that this value is actually being realised?

Perspectives on value aside, Sweeney also laid down an exciting challenge for us evaluators and researchers – suggesting that perhaps we need to ‘be there’ as witnesses – rather than to rely on words, video or photography to document and describe what actually happens during an arts and dementia project.