Demented Poets: the pop music project challenging our image of dementia

A unique new EP combines music inspired by Bowie, Iggy Pop and Depeche Mode and words by writers with dementia, writes Andrew Eaton-Lewis

What would a pop song about dementia sound like? Dementia has become a subject of much interest to TV, theatre, and film in recent years; it recently won Anthony Hopkins an Oscar for The Father. But pop music tends to be preoccupied with youthful concerns: growing up, your first love, having your heart broken.

In lots of ways, though, adolescence and dementia are kindred spirits when it comes to music. In the intensity of our teenage years it can feel as if a favourite song sums up everything you feel about the world. Towards the end of your life, the strength of that feeling means that music can help summon memories that had been thought lost. And this music, increasingly, is contemporary sounding pop music. There are people with dementia today who grew up with the kind of 1980s hits still imitated by pop stars in 2021.

It’s early June, and I’m in an Edinburgh recording studio helping a man with dementia to make a 1980s-style pop song. Gerald King, a 58-year-old Fifer living with young onset dementia, is one of three ‘demented poets’ selected for a new EP conceived by Ronald Coleman, a Scottish mental health activist who runs various projects led by people with dementia including a radio station, Deepness Dementia Radio, that has 10,000 listeners each month. The other two demented poets are Ron himself and John Hole, a Londoner who later moved to Scotland and spent decades working in theatre. The idea is to record and release a collection of original songs adapted from poems by people with dementia, in which the music draws on the writers’ most formative musical memories. Ron tells me he has already found three female writers for the next phase.

As lead songwriter on the project, I begin the process by asking each writer what music means to them and what songs they love. With Gerald the conversation flows easily; it is sobering to meet someone with dementia who shares many of your main musical influences. Gerald loves The Clash, The Stranglers, Iggy Pop, Depeche Mode, Psychedelic Furs and The Human League, and played in several bands when he was younger. The most promising was an electropop five-piece from Glenrothes called Hotline to Moscow. “I thought we would go far and all we needed was a lucky break, but the door never opened,” he tells me. But he recalls “exciting times, exhilarating times, pure joy. Playing live music and writing songs was some of the best times of my youth and it was all because of music.”

He recoils at what he calls the “PVC armchairs and listening to Vera Lynn” image of how music is used to treat people with dementia. “I would be horrified if that were presented to me as a person living with dementia,” he says. “Everyone is different and everyone’s taste in music differs.”

At first Gerald was devastated by his dementia diagnosis. He lost his job, his driving licence and, with that, “30 years of friendships”. “I felt I was no longer contributing to society. The worst impact was how I treated my family. I was depressed, I wouldn’t leave the house and all my frustrations were taken out emotionally on my wife and children, which I find hard to forgive myself for because they are the ones who love and look after me unconditionally.”

Now, he says, life is “totally different”. “I actually look upon having dementia as a blessing. I have met many people throughout the UK and all around the world who are also living with a diagnosis of young onset dementia. These are truly inspirational people and are to be admired for the courage and support they share throughout the dementia community.” Gerald is involved in peer support groups, dementia awareness events, and training for people struggling with a recent diagnosis, just as he was. “Hindsight is a wonderful thing,” he says. “Having a diagnosis of dementia was not the end of the world. It has been a new beginning, it’s introduced me to many new friendships and opened up many new doors.”

Gerald’s poem, Feelings, articulates the fear and frustration he felt when first diagnosed. “I remember writing this poem very well. I could feel a dark cloud slowly fogging up my brain to such an extent that I struggled to carry out the simplest of tasks. My language skills were disrupted to the extent that I could no longer string a sentence together. What really made me stop and reflect was that these darker days were going to become a regular occurrence as my dementia progressed, and that scared me.”

Feelings, the song, is an attempt to express those emotions through the kind of music Gerald loves most – three key reference points were Real Wild Child by Iggy Pop, Always the Sun by the Stranglers, and Crash by the Primitives. I ask Gerald if he’d like to sing the song himself and he politely declines, so instead we open and close the song with fragments of a Hotline to Moscow song called The Evil In You, recorded in Edinburgh in 1985. It turns out to be in the same key, which feels like fate. To our great relief, Gerald is delighted. “I’m grinning from ear to ear,” he tells me when he first hears it. “It immediately takes me back to an exciting era of electronic music.”

John Hole’s song presents a bigger challenge given that he died this year, aged 81. His poem, Going for a Walk, is completely different to Gerald’s, a funny, poignant ode to family and the blurring of memories, featuring a child affectionately referred to as ‘thing’. “He had a sort of nickname, I don’t remember what,” muses one line. “but important it is not. I only know I loved him.”

Talking to John’s family – his daughters Abigail and Esther, his first wife Ginnie, and his second wife Morag – a complex picture emerges. “I think he went into denial and found it difficult to comprehend the changes that were happening to him,” says Morag of John’s dementia diagnosis. “The poem reflects his desire to show the outside world that little had changed and perhaps gave him a sense of control.” As Abigail recalls, “he knew he had memory problems for a long time. When he was diagnosed, it seemed almost a relief, as it seemed he’d been holding things together so much and it was a relief to have a reason why.” Esther remembers John experiencing “deep anxiety” about his dementia but also describes her father as “a man who believed the sun had been quite kind to him while he was here”.

In an obituary published in March, Ginnie describes John as “one of the young turks of regional theatre at a time when the government saw it as a priority”. In the 1960s he was artistic director of the Swan Theatre in Worcestor, founding a repertory company whose members included a young Celia Imrie and Alison Steadman. In the 1970s he became artistic director of the Queen’s Theatre in east London and took a production of Tommy, The Who’s famous musical, to the West End. In the 1980s he set up his own touring company. In later life he wrote two children’s books and a screenplay. Ginnie recalls talking to him on the phone in late 2020 and finding him “much as he had always been – chatty, enthusiastic, including about his painting and writing”.

When I first read John’s poem, my instinct is to try and write gentle, pastoral music to reflect the sense of peace and acceptance it seems to evoke, but discovering his love of theatre, and listening to his family’s anecdotes about his energy, eccentricity and generosity, makes me reconsider. When I ask Ginnie how John would like to be remembered, she responds: “As the buzzy, enterprising person he always was. King of the Castle.” A bold plan emerges – we will create a musical, in the style of one of John’s favourite bands, the Beatles, that tries to sum up his life in two and a half minutes. And so, with the family’s blessing – and a lot of help from Edinburgh-based producer Hamish Brown - we record a three-act mini-epic with sitars, harps, bicycle noises, John Lennon-style harmonies, 1970s Elton John flourishes, a tolling bell, a trumpet solo and homages to Penny Lane, All You Need is Love and, for a final 1960s flourish, the theme from 2001: A Space Odyssey. Luckily the Holes approve. “It’s amazingly close to my dad’s musical taste,” Abigail tells me.

Two months later I am in Wee Studio in Stornoway with project founder Ron Coleman, to finish setting his own poem, The Fighter, to a track that is half 1970s glam rock, half 21st century electronica, with a rhythm imagined as a cross between a heart monitor and a boxing ring. Having heard Ron recite the poem, a response to his own dementia diagnosis, I am keen for him to perform it himself, although there are a few hesitant takes before we find the right tone. The turning point comes when his wife, Karen, suggests he thinks about the last time he was really angry. It works. Ron rasps the poem like a Dundonian Mark E Smith. ‘I am the demented poet!’ it begins. “I cannot fall!’

Ron has plenty of things he could be angry about. He spent over a decade in psychiatric care following two significant traumas in his early life. From this a determined activist emerged, one who believes society has a responsibility to acknowledge the complex factors that lead to mental illness rather than just medicalising it, but also that “we must become confident in our own abilities to change our lives”.

This philosophy has naturally extended to his dementia work. Deepness Dementia Media - the latest in a series of professional partnerships with Karen, a mental health advocate who has worked all over the world - talks of ‘increased autonomy’ and ‘a sense of purpose’ when promoting its courses, workshops, and online resources. “Thirty per cent of our radio content is done by people with dementia,” Ron tells me. “Our next task is to get that up to 50 per cent and then up to 80 per cent.” This month Deepness Dementia Media will host the 100/6000 conference, in Dundee and online, described as ‘the first conference in Scotland run by people living with dementia/cognitive impairment, for people living with dementia/cognitive impairment’.

With much of the dementia system, he argues, “you’re expected to just sit there and wait. A lot of people in my shoes are being taken along to these centres that are full of people in their eighties who are much further on in their journey. All of our projects are about proving we’ve not come to the end of our useful lives.” He quotes another Ronald, a DJ for Deepness Dementia Radio. “He told me, ‘Once people used to ask me what I did and I would tell them I have young onset dementia. When people ask me now, I tell them I’m a DJ on a radio station.’ Isn’t that cool?”

The Demented Poets EP is another expression of this activism, but it also reflects Ron’s increased focus on making art. “In a sense dementia gave me an opportunity to redefine my life and become an artist,” he says. Since his diagnosis he has written a play, Caught in this Moment of Time, which premiered at An Lanntair in Stornoway in 2019 and explores his daily struggles with memory loss and fractious relationship with Alexa, his AI home help. He has plans to take it to the Edinburgh Fringe, and is already writing a follow up, Dementia the Musical. The EP itself is intended to be the first stage in a multimedia project that will add choreography and film to the musical elements. All proceeds will fund more arts projects led by people with dementia.

“I didn’t want to die without leaving something for my family to enjoy and remember my strengths,” he says of the thinking behind the EP. “The whole concept was to create something that was a legacy for the person, and as soon as I thought about wanting to do that for myself I knew it was something other people would want to do, to leave our mark on society. It’s almost like leaving our families a gift.”

He is particularly pleased that, for his own contribution, his wife Karen and daughter Francesca were in the studio with him to sing backing vocals. Karen has also recorded a second track for the EP, a keening song in Gaelic (with words by Ron and music /additional vocals by my wife Laura, who also did the Gaelic translation) in recognition of his life in the Hebrides. Ron wants it to be played at his funeral. “In two or three years I might not remember who you are but in this moment of time we knew each other,” he reflects. “That experience, sharing that moment, is something that can never be taken away. And if you look at Gerry’s family and John’s family, there’s been a lot of shared moments in this process.”

Gerald King agrees. “Never in a million years did I think one of my poems would be converted with music into a song. It’s a memorable and meaningful legacy for me and my family, and a humbling experience.”

The Demented Poets EP is available to download from 17 September and can be pre-ordered now at https://thedementedpoets.bandcamp.com. There will be a launch event at An Lanntair in Stornoway on the day of release. The 100/6000 conference runs from 14-15 September. Find out more at https://www.deepnessdementiamedia.com/news

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