How can we improve life in care homes, as we begin to look beyond the pandemic? Is there a way that care workers and artists, both badly hit in very different respects, could support each other to emerge from this traumatic time?
A project in East London has been exploring the ways that care homes and artists (in this case musicians, dancers and a visual artist) can work together. Their experience suggests that introducing live creative sessions into care homes can be transformative, both for the residents and for the different professionals involved. Before it was interrupted by the pandemic, the scheme tried to find innovative ways to bridge two normally very different worlds – expanding our notion of what creativity means for older people and those living with dementia.
Picture the scene. It’s January 2020. A weak winter sunlight shines through double glazing into a well-heated lounge; there’s a faint smell of coffee. Twelve people are doing different things within a ring of armchairs, but they are all somehow linked together. A man is playing the oboe, varying his rhythm to match the tempo set by a resident with a drum. Someone else holds up a tambourine very carefully, significantly, but does not play it. A care worker in uniform twirls with another resident in slippers, who wiggles her hips to the music. A woman in a grey smock is dancing with some lemons; she bends and offers them to the gentleman nearest the door, who accepts them with a solemn nod. The mood is sometimes a carnivalesque abandon, and at others, a wordless focus. When there are words, they are gentle and encouraging, or they often have the elliptical poetry of Alzheimer’s.
Spitalfields Music was established in 1976 and has decades of experience in bringing music into different settings across the East End of London. This part of town is home to many creative artists but is marked by inequality and poverty – “diverse” and “vibrant” are adjectives that are often used. It can be a great place to live, but there’s a sense that the different communities here sometimes inhabit parallel worlds, failing to interact, until something like this comes along. “It began with an idea – what would an artist’s residency be like in a care home?” says Nicole Artingstall, Producer at Spitalfields Music, who helped develop the project alongside artist and musician Julian West and social gerontologist Hannah Zeilig.
Following a promising pilot, funding was secured from a wide range of donors for activities over three years. A variety of care homes were involved, run by different providers: a large and well-established commercial set-up, a charitable foundation, as well as a newer and smaller company. An early enthusiast was Dr Chai Patel, Chairman of HC-One Care Homes (now retired), who was impressed by the way the work using artists began “unlocking new experiences….and engagement between the residents, the staff and the relatives. We’re onto something really quite special here.”
“We were very ambitious,” admits Bea Hankey, who worked to make it happen with Spitalfields Music. An approach called ‘co-creativity’ was central – something that would probably feel familiar to most primary school music teachers but is too often avoided in settings with older people. There’s an emphasis on being in the moment together, as equal participants, in a spirit of spontaneity and fun.
Tim Cape was one of the musicians on the project. “Everyone is a player and everyone’s the audience, and everyone’s involved,” he explains. “We try to open up various lines of communications that are non-verbal, through sound, through simple body movements, all through a sort of playfulness.”
Charlotte Hunt worked with many of the musicians and artists. “It’s quite incredible how special this project is for artists, in their own practices and their lives. This is so closely linked to their identities, and what music can be – they’ve had profound moments that they’ll never forget.”
“I’ve had some amazing experiences in these sessions,” Tim agrees. “Dementia, it’s an altered state of mind – a more fluid relationship between reality and imagination…there’s a lot less inhibition, and an openness to profound emotional connection.” He believes that people with dementia can be very creative. “A lot of this fluidity and openness is what we aim for in creating art anyway. People who have something like dementia are accessing these different perspectives on living, that often artists are trying to get to.”
Even before the virus, however, it wasn’t always an easy journey. As they started out, both artists and care workers found themselves thrown into unfamiliar and often uncomfortable new situations. Give and take were needed on both sides to find a way of working together. Some of the over-stretched care workers were unconvinced, to start with, by the arrival of a group of artists who seemed likely to get in the way, agitate the residents and disrupt their routines. “Maybe the care staff want to keep a lid on it,” Tim says, “they’ve seen where it can go. ‘That’s another balance. There’s a risk, and if you’re trying to manage a care home, you don’t always want to take risks.”
“At the very beginning, staff would turn the other way,” says Nicole. Trusting each other took a leap of faith. “The staff are still in their uniforms, they’re still very task-focussed, and to expect them to step outside that…or express how they feel through dance, or music, in their space…it was quite a lot to ask.” The new approach was very far from the usual bingo night.
Repeat visits began to make an impact, however, and soon they were met with smiles rather than shrugs. It helped when care home staff began feeling that “we were familiar faces, ‘oh hi, you’re back!’” says Nicole. “Then the staff were supporting us, clearing away the tea trays, saying ‘hey, great to have you here.’ Partnership working was crucial. We were becoming part of the fabric of the home, in a very small way, and they supported the residents to feel that we were familiar too.”
“I thought it was brave of the care staff,” says Bea. “They really did go with it. And trust was built.”
“I think staff were surprised by the sound of the instruments and the effect it had,” said one of the care managers at the time. Others appreciated a break in the routine. “Every day is the same here, you guys came, this was different, another kind of connection, new conversations.”
Above all, many of the staff were delighted by the extent to which residents were able to interact with this approach, even those with advanced dementia who were normally unresponsive. “The sessions were good for me. I always want to do something for my residents – music is the most important thing for them – when they have an instrument in their hand they can touch and feel it even if they can’t play it. Even residents who didn’t take part, who were in the lounge, were excited,” said an activities coordinator from one of the homes.
The most enthusiastic members of care staff became ambassadors for the project. The sessions were an opportunity for care staff and managers to deal with some of the stress of their roles. Even on a bad day, these encounters could lighten the load, and the “mood would change in a session.” A carer might come in with “a face like thunder” but end up “dancing around with something on her head… de–stressing, unlocking something, a bit of lightness, and the care she was giving the rest of the residents benefited, too.”
Another member of staff “joined at a very early session and stayed with us throughout. He was an amazing drummer and energizer in the room and he just changed the direction of what was possible… he really just got what we were doing and brought people to the session. He’d been in a band, he loved it, it was reawakening this thing in him, as well as redefining relationships in his team.”
Some homes were better positioned to benefit than others. “The problem is the pressure care homes are under,” explains Bea. “They’re struggling to keep the basics ticking over and sometimes they lack the capacity for arts work.” Some could see the value of the project, both in terms of well-being and PR – but others simply didn’t have the time or staff to spare. They needed to cover basic health and safety training, they were saying that “in principle it sounds great, but in reality, it’s hard for us.” And like schools, the sad fact is that the places that could benefit the most are often the least able to access outside projects. As Bea comments, “the ones really struggling – who need it most – don’t get it.”
The artists too had to leave some of their expectations behind. “The limitations at first were terrifying – how can we make this work?” Nicole explains. They had to let go of any sense of waiting for the right conditions to deliver a creative session, and embrace more intuitive, improvisational ways of responding.
“The challenge is to drop your normal mode of being an artist and kind of go with this person in the state they’re in,” Tim says.
There were physical constraints – lounges were the wrong shape and seats were difficult to move. “One place had this long narrow room with these massive wipe clean chairs, that hold people up, but aren’t very conducive to a chill out, let’s reset the space…” remembers Nicole. “It required the artists team to really adapt and relax their requirements. OK, we can’t have everyone in a circle. Let’s try and connect the room somehow, bring in material that we run down the middle, or have instruments at either end.”
Sometimes, Nicole says “the life of a home gets in the way.” Staff leave or get called away. “There are a lot of competing pressures. An ambulance arrives and someone needs to go to hospital…”
Working with residents with dementia can of course be challenging, as well as very rewarding. There’s “the energy of a resident who’s excited to come in and drum, every session. How can we use that within what we’re doing?” Nicole recalls one resident who introduced an anarchic – often subversive – unpredictability to proceedings: “she’d try and lift your top up, or prod someone who was playing the cello, or want to bang someone on the head – we tried to find ways to kind of meet her with that and involve her and her playfulness in the session.” Sometimes it went better than others, but as the project went on, the artists found it worked best not to control or shape the activities too closely. With practice, they responded intuitively to developments, helping residents to find positive, creative outlets for their energy.
“We don’t distinguish between instruments and props”, Tim says. “Things that you can throw around or pass from one to the other, things that cross the room.” This is especially helpful for people who find it hard to move around or are confined to a chair – “it means that if you can’t travel yourself, your scope of interaction isn’t so small.”
It was important, Nicole agrees, to provide “different routes in” with objects to touch, as well as dancing and sound. “Someone is going to have a connection with the music – someone’s interested in the scarves – or dancing with some lemons.”
“There’s something for everyone – we’re all different,” says one resident.
And the approach, Tim says, can make connections with even the least responsive residents. At the beginning, care staff tended to bring along the residents who were most able to engage, the residents who “have a lot of chat”, but with time, the artists were able to involve some of the others, and Tim feels the sessions often “work almost best with those with little or no verbal ability” He tells the story of a resident who walked the corridors all day, “in her own world, not engaging at all” over many weeks, until one session near the end, when she stopped at the sound of the music, and “did a little shuffle, a little shake…such subtle things, but so full of character!”
“It’s improvisation, essentially, that’s a lot more social – eye contact and bits of chat are really important as well. The sessions are free-flowing and unstructured, something might burst alive, or right at the end they might get going,” Tim says.
Familiarity and repetition are important to the residents, too – a sense of having spent time and made something together, even when precise details of previous visits or interactions can’t be recalled. “There’s nobody here that I don’t know yet,” says a resident, suggesting he feels comfortable and confident with the mood of the room.
“From nothing, look what came up! Don’t try to sophisticate it,” says another.
After the group session in the lounge, artists moved around the home playing music and interacting in other spaces and corridors and, where appropriate and requested, in residents’ rooms. Some of the residents were very weak, in their final days or even hours. “There’s an incredible power to people in that state, there’s an awareness of being at the end of life,” says Tim. “There’s a real urgency to having that connection, you can do the simplest little thing and it can be really charged.”
“I’m glad I met you on my death bed,” said one resident, half joking and half serious. This work felt important to the artists but was also emotionally draining and occasionally shocking or upsetting.
Covid-19 came as a terrible blow. “It was awful seeing it all play out,” says Bea, “hearing what’s in the news, imagining what’s happening in those homes.” Suddenly, everything stopped. Having developed close relationships with the homes, staff and residents, it was very difficult to break off in this way, and especially to hear news of a high number of deaths, when several homes were badly hit.
All the project workers and artists could do was to send “digital offerings” – messages of support and materials that the homes could use remotely – working to pull together musical recordings, short films and pictures. It felt inadequate. “We got a sense that this isn’t what they need right now,” says Charlotte. “They were getting through day to day.”
The care staff felt the loss of the project too and one of the managers said that “We really miss them – they miss hearing the instruments in the corridors.” A thank you note was received from a care home “Please let everyone know we are also thinking of them.”
The artists and care workers involved speak with passion about the project and would love to get it back up and running, when conditions allow. They are hoping to spread the word about this approach. “Nobody should own this type of work,” Tim is keen to emphasise. “We’re very good at it, but essentially you’re just using your humanity and bit of musical or performative skill, so ultimately there are a lot of people with this skill.”
This year, we have gained a horrible familiarity with the statistics around death. It can be misleading to make comparisons, but it’s interesting to note that before the pandemic, dementia and Alzheimer’s were the leading cause of death in England and Wales, responsible for 66,424 fatalities last year. Dementia is also the most common underlying condition for Covid-19 deaths. A huge number of people are ending their lives with these diseases.
It’s time we started asking ourselves, honestly, what kind of care home we’d want for ourselves, and what kind of final years we hope to spend, even with dementia? The project, and others like it, could be one way to fight the loneliness and fragmentation which have been exacerbated by Covid-19. Care homes have seen their support networks – the volunteers and visitors they once relied on – fall away, and this will take time and help to rebuild. Isolation damages all members of our society, not just the older or more vulnerable.
By celebrating the creative potential – as well as the past – of people with dementia, we acknowledge their humanity, and respect them as complex individuals in the present moment. Volunteers, visitors and workers could all be a part of this. If we value the arts as part of what makes life worth living, then there’s something both hopeful and inspiring about an idea that brings together both artists and those at the end of their time with their neighbours and wider communities, supporting and enriching them all. Care homes, at their best and properly funded, can also be unconventional concert halls, experimental music studios, and dance spaces, at the centre of our communities – places where people never stop exploring, or expressing how it feels to be alive.
– By Sonia Lambert