In 2010 I began the delicate journey of exploring dementia and spirituality.
- What does it mean to forget, to lose words, thoughts, images of our lives, not recognise the people we love and who love us?
- Is a pathway towards the end of our lives embedded within us via faith or nature?
These were just some of the questions I was grappling with and am still grappling with today.
In 2013, after being awarded a Churchill Fellowship, I was able to pause and reflect. I am truly grateful for this opportunity. It was a critical moment for the creative engagement I was involved in, with people living with dementia. I had so many questions about brain health, memory loss, end of life journeys and belief systems. I have not wholly answered all my questions. The road to good solutions is long and sometimes hard.
I am a curious artist and theatre director. The first show I produced for those living with dementia was an interactive storytelling show called Once Upon a Time and the approach – over a decade ago – was very fresh and new. People asked, “If not reminiscing, then what are you doing?” Trying to explain person centred work, that held sensory engagement with an immersive experience at its heart, was difficult to explain. Today it’s in the everyday vocabulary of those working in this area – both caregivers and artists. The show used projection, live music, food, aroma and touch to evoke a response – and yes, sometimes memory. The moments were held and cherished. They were privileged moments of shared laughter, joy, tears and tenderness.
Not everyone liked this show (1 in 15 did not like it), especially those at early stages of dementia. Once Upon a Time had also shown that language was a clear barrier for those with dementia, particularly those at late-stage dementia, as words or their meanings could not be remembered.
Whilst out in Australia in 2014 fulfilling my Churchill Fellowship, I had tentatively tested out my next idea for arts and dementia. I tested out non-verbal communication with people living with late-stage dementia – those who were least engaged with. When residents in the care home engaged creatively, I knew I had found a way to communicate with them on their terms. It became the foundation of The Garden, an interactive installation and performance for people with dementia and their carers.
The experiment was to remove the barrier of language and replace it with slow, immersive, sensory engagement, communicate with open body language, and be led by the person with dementia as they are the expert. I incorporated a couple of my guiding principles – go with the flow and don’t be afraid of silence.
The Garden was a huge success and it toured the UK for years. However, I was acutely aware that we were not reaching or engaging with many from the global majority. From The Garden came these questions: where are the global majority dementia communities and how can we engage with them?
I could only partly answer these questions. I decided to focus on the UK’s South Asian diaspora – because I know and understand it.
I conducted research with Elizabeth Lynch MBE, an arts advisor and researcher, working with artists and communities, to ask if dementia is taboo within the South Asian diaspora. Could the arts dismantle this taboo, and how culturally specific does the project have to be? The report is available here and was kindly funded by The Baring Foundation.
This research encouraged me to produce Love Unspoken – a show co-created with family carers from the South Asian diaspora and working with artists from the global majority.
Sadly, the Covid-19 pandemic stopped it in its tracks. I am considering how to relaunch it, as it is still relevant and vital as we emerge from a pandemic.
During the pandemic I developed a meditative audio piece for Culture Box Study, aimed at a South Asian dementia audience. Again, it needs development and a wider audience to realise its full spiritual, creative and uplifting potential.
Alongside the creative work is further research I have co-researched and co-written with Elizabeth Lynch called Visionaries: a South Asian arts and ageing counter narrative. This report is commissioned by CADA, and will be available shortly. The report highlights South Asian artists and creative communities in England aged 55+, their desires, wants and the urgent need to reflect a truly diverse UK – now, historically and for our collective futures.
It is within this context that I hope to carry on my own creativity within both a creative dementia and creative ageing context and to embed some of the findings into our arts and heritage sectors. So watch this space…
This blog was first published by The Churchill Fellowship in March 2022