Blog: Seb Crutch

The decision to participate in the A Life More Ordinary dementia and arts festival was easy.

One brief conversation with the event organisers unearthed many shared values, aims and attitudes: a desire to reaffirm the value of people with dementia and their experiences; an excitement and sense of privilege in exploring, challenging and shaping perceptions of dementias; and a notion of the arts very much as something to be done with, not to, people living with a dementia.

And it is conversations – in my case hundreds of conversations with people living with rare, atypical or young onset dementias – that form the background to the stories, artwork and videos that I’ll be presenting at the festival.

In my work as a neuropsychologist in the Dementia Research Centre at University College London, people often share questions, uncertainties and experiences which they may not understand, which we the so-called experts may not understand, but which offer real inspiration for scientific experimentation, artistic enquiry and philosophical pondering. Questions like: Am I the right way up? Will I still be me? Does it matter if someone can’t remember an activity they enjoyed “in the moment”?

Our Created Out of Mind residency at the Hub, Wellcome Collection, brings together artists, scientists and people affected by a dementia to consider and respond to just such questions.

Some of our work has explored current representations of dementias in everyday stories, traditional and social media, music and contemporary fiction. Using scientific analysis and creative experimentation, this work has aimed to empower dementia voices, open up new perspectives and better inform representations of what it means to live with dementia.

We have also been examining how the arts can be helpful in finding ways for all of us to experience ourselves “in the moment”, rather than after the fact. A particular interest has been in capturing the variety of responses we have to activities such as seeing paintings or hearing music through a combination of wearable devices (eye trackers, heart rate monitors and the like) and by observing the way we behave, speak and interact with others.

The inspiration for my own interest in dementia and the arts goes back to 1999, when I met William Utermohlen, a renowned painter who, after his diagnosis of Alzheimer’s disease, created an extraordinary series of self-portraits. Bill’s beautiful yet haunting creations communicate both the experience and biology of that condition with great eloquence.

It’s now really exciting for me to see others’ experiences proving powerful catalysts for a wide range of artworks and experiments.

Examples include people with dementia’s descriptions of changes in balance and bodily sensation informing Charles Harrison and Charlie Murphy’s exhibition Trajectories; Talking Life, a series of podcast conversations between writer Susanna Howard and people affected by dementia discussing their relationships with everyday topics such as beauty, willpower, purpose, connection, and sleep; and Simon Ball’s animation Do I See What You See? considering the world through the eyes of people living with Posterior Cortical Atrophy (PCA), a rare form of dementia, which affects the visual areas of the brain.

A Life More Ordinary will provide a great opportunity to showcase fantastic work happening at the Dukes and across the UK that seeks to give people living with dementia more choice, more control and greater access to leisure and cultural opportunities. I for one can’t wait to hear, share and reflect on the inspiring stories of those of us living creatively and purposefully with dementia.