When my grandmother 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 final years, when she suffered from dementia, singing was one of the few guarantees that she would hear her laugh; the words of the songs were often as clear as they had ever been in her mind.
It has long been known that music helps evoke the joys and memories that make a life, which dementia can cloud. “When I sing,” says a participant in Our Time, a drama group at the Leeds Playhouse for people with dementia, “I don’t feel like I’m alone.” These sessions will be led by Nicky Taylor, a researcher and practitioner who exudes enthusiasm for changing the stories we tell about a condition that affects more than 900,000 people in Britain. “People with dementia are often written off,” says Taylor, “but our participants sometimes contribute well into the last days or weeks of their lives. I find that remarkable.”
In 2014, Taylor became the first person – to her knowledge – to introduce dementia-friendly performances anywhere in the world. Designed in collaboration with people with dementia and their carers, these performances are specifically tailored to their audiences, allowing them to enjoy an exciting night out in a safe, bespoke environment, without the fear of disrupting a standard show.
Taylor experienced such a high demand for advice that she created a best-practice guide to organizing dementia-friendly performances, and has since supported theaters in the UK and internationally. Ten years after her debut, dementia-specific work is slowly becoming an increasingly normal part of the theater program. “There is a real awareness in our community,” says Rob Salmon, head of creative engagement at Stephen Joseph Theater in Scarborough. “An older audience makes up a significant portion of our audience and we are committed to catering for them.”
Conversations about adaptations for dementia-friendly performances begin early in the Stephen Joseph, with Zoe Cooper’s raw version of Jane Austen’s Northanger Abbey the next show to be performed in this gently edited manner. “Sometimes they need very small changes, sometimes bigger ones,” says production head Simon Bedwell. “We want the audience to always get the full experience.” The team starts by identifying moments to reduce loud noises, turn off bright flashes, or make the action clearer. Then, on the day, Bedwell introduces the show, has the actors perform in costume and demonstrates stage effects such as smoke machines to help the audience understand what they are about to see. The ushers are trained to think about how someone with dementia might respond or need extra support, and there is a breakout area if someone needs to leave the room. “We are constantly learning and open to advice,” says Salmon. It seems to be working so far. “I’m starting to recognize 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 exercise classes also take place regularly at the theatre, with plans to launch a community café with a dementia-friendly element. “It is more than an obligation,” Salmon emphasizes. “It’s about recognizing that this is what we are here for. We are committed to our audience, which includes many people with diverse needs. The more we care for them and the better we are at 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 lockdown, Paula Garfield, artistic director of Deafinitely Theatre, read about the increase in the number of people living with dementia and began researching how this was impacting the deaf community. “Services to support deaf people with dementia or their caregivers are scarce,” says Garfield. In the UK there are no care homes specifically for deaf people with dementia, and only one care home for deaf people – on the Isle of Wight. “When I think about the future,” Garfield says with a shudder, “I don’t want to be in a nursing home with hearing people where no one can communicate with me.”
For the past two years, Garfield has collaborated with journalist Melissa Mostyn on The Promise, a story about a family at the crossroads of deafness and dementia. Written in conversation with deaf families with dementia and scientists who study the condition and its impact on deaf people, The Promise highlights the impact on the person diagnosed and on their caregiver. Despite one in six people in Britain being deaf or hard of hearing, Mostyn and Garfield have found that the extraordinary lack of healthcare funding for deaf people too often leaves families alone to cope with a diagnosis.
Mostyn, who is deaf, has personal experience of services not meeting her needs; she cares for her daughter but cannot join her local carers’ group because they cannot afford the costs of a BSL interpreter. “It’s common for caregivers to become isolated if you are deaf or hearing,” says Mostyn, “but as a deaf person the isolation is different because you experience communication barriers. I cannot communicate with the other caregivers because we speak a different language.”
Related: Playing a musical instrument or singing is linked to better memory in old age
Inclusion is not only essential for how we support or provide stories for people with dementia, but also for shaping narratives about the condition. “The danger is that someone with dementia will watch a play about dementia and it will be reinforced to them that they are a burden,” says Taylor. “That story has been told too often. By involving people with dementia, you naturally get a different story.” For two companies that make shows with people with dementia, movement is the preferred 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, began work on a play about memory and forgetting, he contacted memory groups and dementia cafes across the country, and spoke to a neuroscientist about how the brain remembers. The participants’ stories about music and memories led to the creation of a dream-like, wordless performance. In The Nature of Forgetting, the show’s story about dementia transcends the barriers of language. “Regardless of where we perform it,” says Pigé, “people are touched in a deep, intuitive way. They always come by to thank you.”
They have returned to perform in the care homes of the first participants, which is also at the heart of the work of masked theater company Vamos Theater. Artistic director Rachael Savage describes her company’s non-verbal show Sharing Joy, which tells the story of nurses in World War II, as “naughty, cheeky, playful, loving and sexy”. Vamos’ performances are specially created for touring care homes and are tangible, with fabrics and objects that the audience can handle. During the pandemic, when entry into care homes was banned, Savage performed outside the windows of care homes, dancing to bring joy to 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, care and play to figure out how. After a performance by Vamos, a care home manager told her that “residents who had not communicated very well were suddenly full of emotions and were talking to the care home staff for days.” Another time, as they were packing the van to leave, a manager ran outside to report that seven residents had rejected their pain medication after the show.
Theater is not a magic wand. A show does not take away the symptoms of dementia. Singing for my grandmother 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, provide purpose and community for people with dementia, and provide relief and vital folly for caregivers. With arts funding continuing to be cut, we are losing life-enhancing work like this. And there are enough losses already.
“You can’t do this work without going about it in the right way with a whole heart,” says Taylor, who is working with Leeds Playhouse participants on a new show about dementia. “We deal with the grief of losing people during our sessions more often than we would like. But there is also enormous joy.”
The promise bee Birmingham representative 6 until April 13; Northern leg, Newcastle upon Tyne, 19 & 20th of April; Home Manchester 25 until April 27; Lyrical HammersmithLondon, 30th of April until May 11. Ddementia-friendly implementation Northanger Abbey at the Stephen Joseph Theatre, Scarborough, 11 April. Our time sessions takes place every other Monday at Leeds Playhouse.