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17 July 2017

From Japan to Wales: how a Travelling Fellowship influenced Re-live’s theatre for people with dementia

Karin Diamond, Re-live theatre
Karin used her Winston Churchill Memorial Trust (WCMT) fellowship to spend time with Dr Yukimi Uchide, a world leader in creative approaches to dementia care.
Arts

Karin was one of several UK practitioners working with arts and older people to undertake a Travelling Fellowship. Their combined experiences with thoughts for UK policy have recently been published in a new report. This scheme was a joint programme between WCMT and the Baring Foundation.

“Twenty years from now, you’ll be more disappointed by the things you didn’t do, than by the things you did do.” H. Jackson Brown

I quietly repeated this quote like a mantra as I nervously boarded my flight to Japan in 2010. I had no idea what was in front of me or that the experience would leave me so profoundly changed.

I had no idea what was in front of me or that the experience would leave me so profoundly changed.

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“I believe the moments when older people feel that they are ‘alive’ are found in their ordinary, seemingly insignificant daily life. That is why it is important for us to value every opportunity of creativity that resides in day-to-day living.” Dr Yukimi Uchide, 2010

I was very fortunate to be awarded a Winston Churchill Memorial Trust Travelling Fellowship to research ‘Theatre and Memory Work’ with Dr Yukimi Uchide – a leader in the field of creative and reciprocal approaches in dementia care. Dr Uchide manages 16 care facilities and is artistic director of a theatre company which promotes a greater understanding of dementia throughout Japan. She is the founder and driving force behind the first ‘Dementia Friends’ initiative in the world and advisor to the Alzheimer’s Association, Japan.

“So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover.” H. Jackson Brown

When I landed at Narita airport in Tokyo, I felt far from exploring or discovering. I sat frozen in arrivals, clutching my enormous case for comfort, unable to move for fear of making a mistake; hours passed as I nervously questioned “What am I doing here? Why did I think I could do this?” I desperately wanted to go home. I was shattered, jet lagged and aware my Fellowship did not include researching the world of airport arrivals! I slowly sailed away from the safe harbour.

The welcome from Dr Uchide and her colleagues was instantly warm and reassuring. She had planned the most incredible schedule and my confidence grew. Dr Uchide’s openness and willingness to share her experiences allowed me to be surprised and inspired by their reciprocal and creative philosophy of care for older people living with dementia.

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“I have people in my life who are important to me, people I rely on, people I want to support, people I want to see, places I want to go. People with dementia are no exception. I believe older people with dementia can continue to take the lead and live their own lives when we value and respect the things that they regard as important in their lives.” Dr Yukimi Uchide, 2010

I visited care homes and day centres, shadowed care workers, social workers, doctors and nurses. I talked to people living with dementia, families affected by dementia and visited people in their own homes. I attended experiential training days for health and social care workers and participated in dementia conferences. One of the many highlights of my time in Japan was touring and performing with Dr Uchide’s theatre company and experiencing the power of theatre to both entertain and inform community audiences about dementia. I even had a small part in the play as Susan Boyle’s sister! (say no more).

If you would like to watch my Fellowship video report, you can find it here.

I co-run Re-Live, a Life Story Theatre company with my colleague Alison O’Connor. Re-Live combines elements of reminiscence work, life review, storytelling and theatre. The benefits of life story work have been well documented, particularly in America and include increased self-esteem, greater resilience and problem solving, reduced anxiety and confusion and a greater sense of social connectedness. We co-create theatre work with older people, people living with dementia, veterans with PTS and people at the end of life.

It’s been seven years since my Fellowship and Dr Uchide’s practice and wisdom continues to inform and inspire me.

It’s been seven years since my Fellowship and Dr Uchide’s practice and wisdom continues to inform and inspire me.

Shortly after returning from Japan, with support from Arts Council of Wales and The Baring Foundation, Re-Live launched an experiential dementia training programme directly inspired by the training I attended for health and social care workers in Japan. To date, we have trained over 4,000 health & social care workers across Wales and England.

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“I still dream at night and in my dreams I don’t have Alzheimers. Coming to the ‘Memoria’ group is a bit like dreaming.” Jeannette, living with dementia

In 2014, we devised a theatre show, ‘Memoria’, enabling people living with dementia and families to share their experiences of dementia on stage. ‘Memoria’ was performed to sold out audiences and was live streamed to over 4,000 people in 12 countries (including to Dr Uchide’s community in Japan!). The Memoria group continue to share their experiences in conferences and community settings, raising awareness and influencing policy.

If you would like to watch a performance of ‘Memoria’ you can find it here.

In 2015, I wrote a play about dementia – Belonging/Perthyn which was inspired by Dr Uchide’s dementia awareness play and deeply rooted in our creative work with people living with dementia and families. Supported by Arts Council Wales and The Baring Foundation, we produced a 6 week national tour. Matinée performances were attended by over 2,000 health and social care workers as dementia training. Susan Boyle’s sister didn’t feature, but Dr Uchide’s vision for a dementia supportive society is at the heart of the production.

Re-live Picture 6
“I am still thinking about ‘Belonging’ and all the little undercurrents that we ignore because we are too busy dealing with the big picture. Whatever job I think is more important actually isn’t and it will support me to redirect my energy to what matters to the person with dementia.” Residential Care Home Manager, Cardiff

I believe my experiences in Japan have strengthened my belief that compassion and hope become possible when we recognise our shared humanity. The Fellowship continues to influence my practice and the ripple effect has been extraordinary. Thank you WCMT and The Baring Foundation for supporting me to explore, dream and discover.

Karin Diamond is co-founder and co-director of Re-Live, a life story theatre company based in Cardiff, Wales.