‘It gives me an incentive to carry on’: The music groups giving a lifeline to people with dementia

When Graham was 16, he figured he’d learn to play the guitar. The Sixties were getting underway and rock’n’roll was at full tilt. He found a knack for the six strings, and fell in love with songs by The Yardbirds, Beatles, and Rolling Stones. He carried on playing for another 50 years and cherished an ever-swelling collection of CDs. But when Graham was in his mid-sixties, his wife died and he didn’t feel he could do it anymore.

It’s been a decade since Graham lost his wife and since he last picked up a guitar. But a telephone call last summer kickstarted a process that’s reconnected him with his past, himself, and his instrument. Graham is 76 now and suffers from vascular dementia, so finding his way around the old thing is difficult. The muscle memory’s not there anymore. But he perseveres, joining a music group in Sale, just south of Manchester, each month. At today’s meeting, on a wet Friday in October, a group of 10 has gathered in the Salvation Army centre with their guitars, shakers, and cymbals. “It keeps me going,” says Graham, as the other players filter out of the hall to get teas and coffees, “it gives me an incentive to carry on.”

For the past hour, Graham, who is one of the approximately 150,000 people in the UK diagnosed with vascular dementia, has been shifting between guitar, cajón and woodblock, adding a sprinkle of vocals here and there, and helping Eric, another elderly attendee, master his maraca technique. The programme is run by community arts organisation String Of Hearts, and the organisation’s co-director, Lucy Geddes, has noted the increasing popularity of sessions such as these: she’s currently handling around 50 new referrals, reflecting a wider trend across the UK, she says.

Social prescribing is having something of a moment, not least because of the enormous strain that the pandemic (and a decade of government austerity before it) has placed on health and social care services. It operates on the understanding that a person’s health is determined by a range of social, economic, and environmental factors. Broadly, it involves non-clinical treatments that can include anything from taking more exercise to joining a social club or improving your diet.

Referrals are made by GPs, nurses and “link workers”, the name for people in the community who connect others with relevant groups and services. But instead of sending patients to a consultant or clinical specialist, they might put them in touch with a walking club or art class. Increasingly, music is being included in these referrals – particularly for those living with dementia. Graham was referred to his music programme by a link worker after the UK went into lockdown last year. He’s attended religiously ever since.

There is no cure for dementia. It’s a condition unique in its ability to strip away a person’s confidence and identity, and pits apathy and agitation against one another for those who suffer from it. But at a clinical level, music has been proven to counter some impacts of the condition. Studies have shown that “memory for familiar music is spared in dementia”. At least one high profile example of this exists: Tony Bennett has been living with Alzheimer’s (the disease most commonly associated with dementia) for the past five years, and is reportedly unable to hold a conversation, yet he can still belt out the classics well into his nineties.

Music can trigger reminiscence, reconnecting people with slivers of their identity. It can also aid with physical exercise, lifting dementia patients out of apathy. Increasingly, the process of making music, by playing in groups or contributing to songwriting, is understood as having an impact too. A recent meta-study in the United States found a “small but statistically significant effect on cognitive functioning” for older adults with dementia who had taken part in music-making groups. In Sale, the effect is clear. Having warmed up on a few familiar favourites, the session turns to working through a song that one of the group’s participants – Andrew on ukulele – has been writing. Immediately, there is a different fizz in the air as the group workshops new arrangements: Richard (on guitar) suggests the addition of a bridge; Liz, another recent joiner with dementia, works out chords; and Graham hums vocal lines to himself and taps out rhythmic variations on a box drum.

Social prescribing initiatives are gradually being woven in to the fabric of the UK’s social care system. Five months before the UK entered its first lockdown last year, the National Academy for Social Prescribing (NASP) was set up as an independent organisation tasked with developing, promoting, and funding social prescribing programmes across the UK. Since then, the effects of the Covid-19 pandemic have only emphasised existing health inequalities in the UK driven by social, economic, and environmental disparity.

James Sanderson, director of personalised care at NHS England and the NASP’s CEO, says that, even before the pandemic arrived, greater understanding of the social determinants of health, such as housing, income, and education, was changing how people thought about social prescribing. Even those in the well-housed, wealthy, and ultra-educated corridors of power could picture the benefit: the Conservatives enshrined an extension of social prescribing in their manifesto commitment at the last election, and Sanderson is among those working to hold them to the promise.

Sanderson says that around half a million people in the UK experienced social prescribing last year, and that the 2024 target of reaching a million people is on track to be “massively exceeded” because of the booming popularity of the approach. The NHS has committed to putting 4,500 link workers in place by 2024. If Sanderson’s estimates bear out, that workforce investment may need to increase too.

But, as with many of the current government’s health and social care solutions, the problems they’re aiming to fix are broadly of their own creation. A decade of austerity has placed untold burdens on frontline staff. Sanderson says that the GPs he speaks with report as many as 50 per cent of their appointments being made for non-medical reasons, such as loneliness or day-to-day social support. A recent study conducted at the University of Sheffield found that people who feel isolated make more GP visits. The result is creaking primary care, and an underserved public. Meanwhile, the US opioid epidemic (and fears that something similar may soon grip our own shores) has been a cold reminder of the dangers of offering a pill to solve all problems.

Greater interest in social prescribing, and the role played by music organisations like String Of Hearts, could alleviate some of this pressure (even as cuts to music education threaten the future of the very services they wish to promote). According to the government’s own research, in some parts of the country access to social prescribing link workers has resulted in patients with long-term conditions making 47 per cent fewer hospital appointments and 38 per cent fewer trips to A&E.

One such place is Brighton. It’s half noon one Saturday in October, and 18 beaming faces are crammed into a Zoom window. In the top left of the screen is Udita Everett, a music therapist who’s been leading this singing group since 2007. She’s directing a series of stretches and breathing exercises. The group was originally formed as a way to support people with breathing difficulties, such as asthma and COPD; but it soon became clear that its benefits were extending beyond this more specific remit. When the NHS cut the programme’s funding in 2010, Everett and the Robin Hood Health Foundation’s HERA project (the organisation under which the group is run) decided to expand its mission. Since then, the group has welcomed a whole range of people, including those experiencing loneliness, living with dementia or other long-term health complications.

When it’s time to sing, there is first a choral rendition of Bob Dylan’s “Make You Feel My Love”, then a whip through “Sunny Afternoon” by The Kinks, into an adapted version of Mungo Jerry’s “In The Summertime”, rewritten by one of the group’s attendees to switch out horny references to “women” for “swimming”. Everybody attending, bar Everett, goes on mute to avoid the inevitable cacophony caused by lagging connection speeds. This is just one of the downsides to gathering remotely (another being, as many are quick to point out, that it stops them having a cup of tea and a natter afterwards). But there have been upsides too.

When stay-at-home orders were given last spring and letters recommending shielding began dropping through letterboxes, Everett and Emma Drew, HERA’s programme director, expected a drop-off in engagement. But in fact, after moving online and helping attendees access the internet, numbers went up as singers from different locations were able to attend multiple sessions per month (previously they’d only been able to travel to their nearest meet-up). “We’ve unleashed loads of really confident singing older people onto the internet,” says Drew with audible glee, “and I can’t be more pleased.”

In Sale, String Of Hearts ran its music groups by phone during lockdown, singing and writing songs down the line. This week the group released an album of recordings made over that period, including original songs written over the phone. Graham’s contribution, titled “Two Lonely Boats”, has offered him another means of processing his wife’s passing and cementing her in his fleeting memory.

But as these groups tentatively begin meeting in person again, they do so with heightened awareness of the challenges that lie ahead. Lockdowns have hit those with dementia particularly hard. Ensuring these programmes can maintain a long-term foothold in the communities they operate in remains a foremost concern. This is of particular importance in the case of dementia patients, where treatment has to be long term and consistent if it’s going to have a lasting positive impact, not only for the patients but the families and carers affected alongside them too – people who will carry the trauma of the experience with them long after their loved one has passed away. Having a funding carpet yanked away at any given moment can do immeasurable damage.

“Rather than have, as has happened in the past, lots of projects come and happen to our community, we’re very much about growing solutions for common good within the community,” says Des Reynolds, who runs the Seagull Theatre in Lowestoft, Suffolk. He says that funding that “comes with lots of strings attached” can be more burden than relief, since “a lot of time and effort is then put into fulfilling the hoops rather than fulfilling the needs of your community.”

Being able to demonstrate the success of programmes like these in a way that’s palatable to purse-string-controllers from outside of the social prescribing sphere, however, remains difficult –no matter how powerful the story. Rosie Mead, co-founder of Devon-based social enterprise Musica, and an academic who’s been studying the link between music and dementia for the past 12 years, has recently begun work with Hallmark Care Homes to trial quantitative measurement of Musica’s care programmes. But she remains wary of the risk associated with reducing people to data points. “Even if the numbers tell you that, for instance, agitation has been reduced by so much per cent overall, it actually doesn’t tell you very much [about the individual’s experience],” she says.

Focus on the individual is paramount within social prescribing. HERA operates out of a central GP surgery, giving it increased visibility and contributing to word-of-mouth referrals. Drew hopes to involve receptionists in the referrals process, since they often have the closest personal relationships with patients. Mead, meanwhile, wants to modernise what dementia care programmes can look like, particularly for those in their forties and fifties experiencing an early onset of the condition. She wants to move away from the idea that sitting in a circle bleating out Vera Lynn is going to solve the complex issues faced by people with dementia. “A lot of people living in care homes right now were too young during the war to remember those songs,” says Mead, “or even if they do, it might not be what resonates with them. I know one lady who’s in her nineties who just bought a Clean Bandit album.”

Ask Graham what his favourite music is, and it’s a job to get him to stop talking. He can’t remember exactly how he arrived in Sale today, but he’ll recount in detail all the times he graced the stage as a youngster. He’s not quite sure how he first got involved with String Of Hearts – “did you find me, or did I find you?” he asks co-director Lucy Geddes – but he’s crystal clear on what the experience has done for him. “She rescued me from the shadows,” he says, nodding over at Geddes. “I came back out again.” He smiles. “Anyway, are you coming for a tea and a biscuit?”

The Strings of Heart album is out now via stringofheartscic.bandcamp.com (stringofhearts.co.uk)