‘The story of being a burden has been told too many times’: how dementia-friendly theatre is changing the narrative
When my grandma was a child, she wanted to be a star. She would hide behind the kitchen door when her parents had friends over and do her best opera singer impression, hoping to be discovered. In her last years, when she was living with dementia, singing to her was one of the few guarantees of hearing her laugh, the words to the songs often still as clear as they had ever been in her mind.
Music has long been known to help rustle up the joys and memories that make a life, which dementia can obscure. “When I’m singing,” says one participant of Our Time, a drama group at Leeds Playhouse for people living with dementia, “I don’t feel that I’m on my own.” These sessions are led by Nicky Taylor, a researcher and practitioner who radiates enthusiasm for changing the stories we tell about a condition that affects more than 900,000 people in the UK. “People with dementia are often written off,” says Taylor, “but our participants are sometimes contributing right up until the last days or weeks of their life. That, to me, is remarkable.”
In 2014, Taylor was the first person to introduce dementia-friendly performances – as far as she is aware – anywhere in the world. Designed in collaboration with people living with dementia and their carers, these performances are specifically adapted for their audience, allowing them to have a rollicking night out in a safe, tailored environment, free of the fear of disturbing a standard show.
Taylor was experiencing such high demand for advice that she created a best-practice guide to staging dementia-friendly performances, and has since supported theatres across the UK and internationally. A decade on from her debut, dementia-specific work is slowly becoming a more common feature on a theatre’s programme. “There’s a real consciousness of our community,” says Rob Salmon, the head of creative engagement at Scarborough’s Stephen Joseph theatre. “An older audience is a significant portion of our audience and we are keen to look after them.”
Conversations about adaptations for dementia-friendly performances start early at the Stephen Joseph, with Zoe Cooper’s raucous version of Jane Austen’s Northanger Abbey the next show to be staged in this gently edited way. “Sometimes they need very small changes, sometimes more major,” says head of production Simon Bedwell. “We want the audience to always get the full experience.” The team begins by identifying moments to reduce loud noises, take out bright strobes or make the action clearer. Then, on the day, Bedwell introduces the show, brings the actors on in costume and demonstrates stage effects such as smoke machines to help the audience understand what they’re about to see. Ushers are trained to think how someone with dementia may react or need extra support, and there is a breakout space if anyone needs to leave the auditorium. “We are constantly learning and open to advice,” says Salmon. It seems to be working so far. “I’ve started to recognise the same faces,” Bedwell says happily, “and actors will often say they enjoyed the performance more than a Saturday night with a full house.”
Dementia-friendly cinema screenings and movement classes are also regular occurrences at the theatre, with plans to launch a community cafe that will include a dementia-friendly element. “It’s more than an obligation,” insists Salmon. “It’s about recognising that’s what we’re here for. We are dedicated to our audiences and that includes a lot of people with a diverse set of needs. The more we look after them and the better we are at it, the more valuable we are to their lives.”
Designing a service for people with dementia has no one-size-fits-all approach, whether in theatre or healthcare. During lockdown Paula Garfield, the artistic director of Deafinitely Theatre, read about the increase of people living with dementia and started investigating how this was affecting the deaf community. “Services to support deaf people with dementia or their carers are few and far between,” says Garfield. In the UK, there are no care homes specifically for deaf people living with dementia, and only one care home for deaf people at all – on the Isle of Wight. “Thinking about the future,” Garfield says with a shudder, “I don’t want to be in a care home with hearing people where no one can communicate with me.”
For the last two years, Garfield has been working with the journalist Melissa Mostyn on The Promise, a story of a family navigating the intersection of deafness and dementia. Made in conversation with deaf families living with dementia and scientists studying the condition and its impact on deaf people, The Promise highlights the impact on the person with the diagnosis as well as their carer. Despite one in six people in the UK being deaf or hard of hearing, Mostyn and Garfield have found that the extraordinary lack of funding for healthcare services for deaf people too often leaves families on their own to deal with a diagnosis.
Mostyn, who is deaf, has personal experience of services failing to serve her needs; she is a carer for her daughter, but she is unable to join her local carers’ group because they cannot afford to pay for a BSL interpreter. “Carers being isolated is common if you’re deaf or hearing,” Mostyn says, “but as a deaf person, the isolation is different because you’re experiencing communication barriers. I can’t communicate with the other carers because we speak a different language.”
Related: Playing a musical instrument or singing is linked to better memory in older age
Inclusion is vital not just for the way we provide support or stories for people with dementia, but for shaping narratives about the condition. “The danger is that a person with dementia goes to watch a play about dementia and it’s reinforced to them that they are a burden,” says Taylor. “That story has been told too many times now. By involving people with dementia, you naturally get a different story.” For two companies creating shows with people with dementia, the favoured medium to tell such a story is movement.
“We always try to get in touch with the experts,” says director Guillaume Pigé. When his company, Theatre Re, started to work on a play about memory and forgetting, he contacted memory groups and dementia cafes around the country, as well as talking to a neuroscientist about how the brain remembers. The participants’ stories of music and memories led to the creation of a dream-like, wordless performance. In The Nature of Forgetting, the narrative the show tells about dementia transcends the barriers of language. “Regardless of where we perform it,” Pigé says, “people are touched in a deep, intuitive way. They always come up and say thank you.”
They have gone back to perform in the care homes of the initial participants, which also forms the core base of the work of masked-theatre company Vamos Theatre. Its artistic director, Rachael Savage, describes her company’s non-verbal show Sharing Joy, which tells the story of nurses in the second world war, as “naughty, cheeky, playful, loving and sexy”. Made specifically to tour around care homes, Vamos’s performances are tactile, with fabric and objects for audiences to handle. During the pandemic, when care home access was forbidden, Savage performed outside care home windows, dancing to bring delight in dark days.
Connecting with people in the later stages of dementia through performance is a particular focus for Savage. “Because you can connect,” she says; it just takes time and care and play to find out how. After one show by Vamos, a care home manager told her that “residents who hadn’t communicated very well were suddenly filled with emotion and were chatting to care home staff for days”. Another time, as they were packing up the van to leave, a manager ran out to report that after the show, seven residents had rejected their pain medication.
Theatre is no magic wand. A show does not remove the symptoms of dementia. Singing to my grandma in her last days did not keep her alive. But through adapted play, music and stories, drama can help us better connect with our loved ones, offer purpose and community to people with dementia, and provide respite and vital silliness to carers. As arts funding is continually slashed, life-enhancing work such as this is what we lose. And there is already plenty of loss to go around.
“You can’t do this work without engaging properly with a full heart,” says Taylor, who is working with Leeds Playhouse participants to put on a new show about dementia. “We deal with the grief of losing people in our sessions more frequently than we’d like to. But there is also a tremendous amount of joy.”
The Promise at Birmingham Rep 6 to 13 April; Northern Stage, Newcastle upon Tyne, 19 & 20 April; Home Manchester 25 to 27 April; Lyric Hammersmith, London, 30 April to 11 May. Dementia-friendly performance of Northanger Abbey at the Stephen Joseph theatre, Scarborough, 11 April. Our Time sessions take place every other Monday at Leeds Playhouse.
