In recent years, use of the term co-creativity seems to be steadily growing – this despite the fact that it is a term that remains undefined in the Oxford English Dictionary, and the distinction between co-creativity and a number of other terms, (for example, co-production, or co-design) remains a subject of debate. This event, generously supported by the Royal Academy of Music and the British Society of Gerontology, was intended for artists who work with people living with dementia and aimed to disseminate some of the research that Unmapped have been working on over the last couple of years. This has focussed on the possibilities for working co-creatively through the arts with people living with dementia, and what we can learn about agency and wellbeing.

We were also joined by three academics and practitioners from Japan, who shared some of their work and perspectives:

  • Dr Herb Fondevilla, Aoyama Gakuin University, Tokyo
  • Prof Yoko Hayashi, Founding President of Arts Alive
  • Dr Nahoko Kusaka, Doshisha Women’s College, Kyoto

The day began with some sharing of knowledge about dementia – what it is, how it is defined, how people living with the condition might be affected by it. This proved to be a very useful session for attendees; many artists work with people living with dementia, but relatively little time is given in any training or preparation to understanding the huge number of different causes of dementia, and the different ways that people might be affected. We discussed the ways in which people affected by Alzheimer’s Disease, Post Cortical Atrophy, Semantic dementia, and Behavioural Variant Frontotemporal dementia may all be classed as ‘living with dementia’, but are likely to experience quite different symptoms. It can be helpful to understand these symptoms, as it is likely that for a person with more advanced dementia, many of these symptoms may be present as more of the brain becomes affected. 

We then considered the ways in which our thoughts and attitudes are affected by political, medical and cultural talk, drawing upon the work of Dr Hannah Zeilig and in particular her article Dementia as a Cultural MetaphorIt was fascinating to think about the ways in which portrayals of dementia in films, books, on television and in the news affect our (mis)understanding of dementia, often contributing to the stigma and confusion that seems to surround the condition. In news reports, dementia is frequently referred to as ‘a plague’, or a ‘silver tsunami’, and there is still the use of language that describes people as ‘zombies’ and ‘the living dead’. Talk by politicians has referred to ‘rising tides’ of people living with dementia, and we are frequently urged to battle and defeat this impending threat. It was however also encouraging to think about the ways in which more recent media portrayals have begun to challenge this – for example the BBC programmes My Dementia Choir, and of course the work of people living with dementia themselves, including Wendy Mitchell, Dr Jennifer Bute and Terry Pratchett.

The afternoon gave us three presentations from colleagues working in Japan. Dr Nahoko Kusaka spoke of her work and research as part of the Wonderful Ageing Project; this has included children and older people collaborating on creating software for a dancing robot, and study of a music improvisation project for professional musicians and people living with dementia. Prof Yoko Hayashi spoke of her inspiring work as founding director of Arts Alive. She charted the development of the organisation’s work over twenty years, from early beginnings to current participation in the international A-health research study. Dr Herb Fondevilla shared some of her work and reflections on taking part in the Memories in the Making programme in California, which focussed on the experiences of the Japanese American community.

The final session was presented by Julian West and Millie van der Byl Williams. The presenters shared their experience, research and findings from the With All project. Part of the Wellcome funded Created out of Mind research project, With All was a co-creative arts project that included people living with dementia, their partners and friends, professional musicians and dancers and four researchers. The presentation described the initial inspiration for the project and it’s setting up and delivery. It also described the research methods used and the findings of the project. These included new ideas concerning agency and wellbeing for people living with dementia, and the role of the arts used co-creatively in enhancing them. More information can be found in the following articles:

  • Zeilig, H., West, J. and van der Byl Williams, M. (2018), “Co-creativity: possibilities for using the arts with people with a dementia”, Quality in Ageing and Older Adults, Vol. 19 No. 2, pp. 135-145. https://doi.org/10.1108/QAOA-02-2018-0008
  • Hannah Zeilig, Victoria Tischler, Millie van der Byl Williams, Julian West, Sarah Strohmaier (2019), “Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia”, Journal of Aging Studies, Volume 49, pp. 16-24, ISSN 0890-4065, https://doi.org/10.1016/j.jaging.2019.03.002

The day finished with a ‘Long Table’ discussion. This methodology was developed by Lois Weaver as a way of enabling and encouraging broader and wider discussions, and was found to be extremely effective in drawing on more of the shared expertise in the room.