by When my grandmother was a child, she wanted to be a star. She hid behind the kitchen door when her parents had friends over and would do her best impression of the opera singer, hoping she would be found. In her last years, living with dementia, singing was one of the few guarantees that she would hear her laugh, the words of the songs often still as clear as ever in her mind.
Music has long been known to aid in the comfort and memories that create life, which dementia can mask. “When I’m singing,” says one participant of Our Time, a drama group at Leeds Playhouse for people with dementia, “I don’t feel alone.” These sessions are led by researcher and practitioner Nicky Taylor, who is passionate about changing the stories we tell about a condition that affects more than 900,000 in the UK. “People with dementia are often written off,” says Taylor, “but sometimes our participants are making contributions right up to the last days or weeks of their lives. That, to me, is great.”
In 2014, Taylor became the first person to introduce dementia-friendly performances – as far as she knows – anywhere in the world. Designed in collaboration with people with dementia and their carers, these performances are tailored specifically for their audience, allowing them to have an exciting night in a safe and bespoke environment, without fear of disruption to a standard show.
Taylor’s advice was so sought after that she created a best practice guide for staging dementia-friendly productions, and has since supported theaters across the UK and internationally. Ten years on from its inception, dementia-specific work is slowly becoming more popular on the theater stage. “Our community is very conscious,” says Rob Salmon, head of creative engagement at the Stephen Joseph Theater in Scarborough. “Older audiences are a significant part of our audience and we’re keen to cater to them.”
Talks about adaptations for dementia-friendly productions by Stephen Joseph will soon begin, with Zoe Cooper’s edgy version of Jane Austen’s Northanger Abbey the next show to be staged in this edited way gently. “Sometimes they need very small changes, sometimes big changes,” says head of production Simon Bedwell. “We always want the audience to get the full experience.” The team starts by identifying moments to reduce loud noise, achieve bright streaks or make the action clearer. Then, on the day, Bedwell introduces the show, brings the actors in costume and displays stage effects such as smoke machines to help the audience understand what they are about to see. Ushers are trained to think about how someone with dementia might react or need extra support, and there is a separate space if anyone needs to leave the auditorium. “We are always learning and open to advice,” says Salmon. It seems to be working so far. “I started to recognize the same faces,” says Bedwell happily, “and actors will often say they enjoyed the performance more than a Saturday night with a full house.”
The theater also has frequent cinema screenings and dementia-friendly movement classes, and there are plans to launch a community cafe which will include a dementia-friendly feature. “It’s more than an obligation,” Salmon insists. “It’s about recognizing that that’s what we’re here for. We are committed to our audience and that includes many people with a diverse range of needs. The more we care for them and the better we do it, the more valuable we are to their lives.”
There is no one-size-fits-all approach to designing a service for people with dementia, whether in theater or healthcare. During the lockdown, Paula Garfield, artistic director of Deafinitely Theatre, read about the increasing number of people with dementia and began to investigate how this was affecting the deaf community. “There are few services that support deaf people with dementia or their carers,” says Garfield. In the UK, there are no care homes specifically for deaf people with dementia, and there is only one care home for deaf people – on the Isle of Wight. “Thinking about the future,” Garfield says with a shudder, “I don’t want to be in a care home listening to people who can’t communicate with me.”
For the past two years, Garfield has been working with journalist Melissa Mostyn on The Promise, a story about a family dealing with deafness and dementia. Made in conversation with families of deaf people with dementia and scientists studying the condition and its impact on deaf people, the Pledge highlights the impact on the person diagnosed 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 all too often leaves families alone to deal with diagnosis.
Mostyn, who is deaf, has personal experience of services that do not meet his needs; she is a carer for her daughter, but she is unable to join her local carers group as they cannot afford to pay for an ESB interpreter. “Caregivers are often isolated if you are deaf or hard of hearing,” says Mostyn, “but as a deaf person, the isolation is different because you have communication barriers. I can’t communicate with the other carers because we speak a different language.”
Related: Playing musical instruments or singing is associated with better memory in old age
Inclusion is critical not only to how we provide support or stories for people with dementia, but to shaping the narrative of the condition. “There’s a risk that someone with dementia goes to watch a drama about dementia and it’s reinforced to them that they’re a burden,” says Taylor. “That story has been told many times now. By involving people with dementia, you naturally get a different story.” For two companies that create shows with people with dementia, movement is the best medium to tell such a story.
“We always try to get in touch with the experts,” says director Guillaume Pigé. When his company, Theater Re, started working 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 musical stories and memories of the participants resulted in the creation of a dreamy wordless performance. In The Nature of Forgetting, the story the show tells about dementia transcends language barriers. “No matter where we do it,” says Pigé, “people are touched in a deep, intuitive way. They always come up and say thank you.”
They have gone back to performing in the care homes of the original participants, which is the cornerstone of the work of the theater 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 “bold, funny, fun, loving and sexy”. Made specifically for touring care homes, Vamos’ performances are tactile, with fabric and objects to handle. During the pandemic, when access to care homes was banned, Savage performed outside the windows of the care homes, dancing to enjoy dark days.
Savage’s particular focus is on connecting with people in the later stages of dementia through performance. “Because you can connect,” she says; it just takes time and care and play to find out how. After one show with Vamos, a care home manager told her that “suddenly residents who didn’t communicate well were filled with emotion and were chatting with the care home staff for days”. Another time, as they were packing up the van to leave, a manager ran out saying that seven residents had refused their pain medication after the show.
There is no magic wand in theatre. A show does not remove the symptoms of dementia. She did not keep her alive by singing to my grandmother in her last days. But through adapted play, music and stories, drama can help us connect better with our loved ones, offer purpose and community to people with dementia, and provide vital relief and relief to carers. As funding for the arts continues to decline, it is work like this that improves the lives we lose. And there are plenty of losses to go around already.
“You can’t do this work without really engaging with a whole 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 often than we would like. But we are also very happy.”
The Promise at Birmingham Rep 6 until the 13th of April; North Stage, Newcastle upon Tyne, 19 & April 20; Manchester town 25 until April 27; Lyric HammersmithLondon, April 30 until the 11th of May. Dentity-friendly performance of Northanger Abbey at the Stephen Joseph Theatre, Scarborough, April 11. Our Time sessions takes place every other Monday at Leeds Playhouse.
