‘It brings you back’: the suburban choir helping people living with dementia reconnect | Dementia

Leigh Scully looks to her husband, and asks: “Have you been enjoying singing, darling?”

“Music. Music. Music. I love it,” Peter Scully says, with a smile and a drumbeat between each word.

Peter, who is living with dementia, fell in love with the Everly Brothers when he was a young teen. “When they were in Australia, I snuck over to my uncle’s so I could get into the …” He stalls over the word.

“The performance?” Leigh prompts.

“Yes,” says Peter. “And for the rest of my life, that’s what I have been doing.”

Today’s concert, however, is the Good Life Chorus (GLC) choir in West Ryde and it’s open invitation. Like clockwork, participants file in through the front of the community hall before a 1.30pm start. Most come in pairs, elbows looped together moving at a steady pace, stopping only to sign in, plop a gold coin into a biscuit tin and find their name tags, which take up an entire table at the back, all 50 of them. Chatter and clatter fills the hall with a joyful purpose.

This choir, run entirely by volunteers, meets every Wednesday and is “more of a singalong than it is a choir”, conductor Brian Hayes says. The GLC was set up in 2017 by music teacher and choir specialist Bronwyn Hendy, with the support of the Sydney Welsh Choir. Many of the choristers at GLC are living with dementia. They attend weekly rehearsals with their partners or loved ones, who are also generally their carers.

There’s Carol and Tony sitting up front; Denise and Bruce finding their preferred row; Leigh and Peter nestling up the back; and Dr Michelle Wong and her mother-in-law Jing in an aisle seat, making space for Jing’s walker. With the help of Rosemary Eliott, the president of the choir, a projector is screening YouTube versions of Raindrops Keep Falling on My Head, What A Wonderful World and Sweet Caroline. Eliott, I come to learn, is the thread holding this group of colourful characters together.

There are more men with dementia who attend GLC (brought in by their female carers), than women with dementia. This doesn’t reflect the statistics however. Women and men under 80 are generally at equal risk for all types of dementia – other than Alzheimer’s disease. For 90-year-olds and above, dementia affects women at a rate 1.4 times that of men.

In 2023, more than 400,000 Australians were living with the neurological condition of dementia. Experts suggest the number of adults living with the condition worldwide could reach 153 million by 2050. The absence of a cure or definitive medical treatment has meant researchers and practitioners have relied on psychosocial approaches to better support people living with dementia.

Music, Peter says, “is critical” to his wellbeing. In the last couple of decades, researchers have studied the effects music has on people living with dementia. For example, studies have found that carers singing the steps of daily tasks, like dressing, washing and brushing teeth, may help people living with dementia maintain personal hygiene in a calm and fun environment. The Sydney Conservatorium of Music with the University of Sydney’s Brain and Mind Centre is pioneering research into musical interventions: whether learning to play a musical instrument or singing in a choir can improve cognition in people with very mild memory difficulty, before dementia develops. But for those who choose to sing in dementia-inclusive choirs, numerous studies have found substantial improvements in communication, mood, wellbeing and quality of life.

It is often believed – or feared – that people living with dementia lose the capacity to keep doing the things they love. The choir upends that misconception. It reconnects people with dementia to something they know and enjoyed before their diagnosis. “It’s very good for [Peter] to do this,” Leigh says. “Because the songs are so familiar … you don’t have to be a musical genius. And even when you’re very advanced into dementia it brings you back.”

Jing Lee would love to be singing in the Opera House, she says, but sings at GLC instead, with the help of her son Jeff and his wife, Dr Michelle Wong. “It’s really helped us get out of home and connect,” Wong says.

Carol Cullen has been bringing her husband, Tony, who is living with dementia, to GLC since last year. They sit together in the front row, wearing matching grey jumpers – Tony donning a Peaky Blinders hat. He can play music by ear, Carol boasts.

“You know how that came about?” Tony directs his attention to me. Suddenly he’s taken back to when he was a young man, always getting into trouble. He explains, with some help from Carol, how he couldn’t read sheet music but bit by bit he learned the tunes to songs his sister would play on the piano. He’s been a pianist ever since.

“If you think about it, music has played a role in the lives of most people at some point. So even if other forms of memory are no longer retained, musical memory can be well preserved,” says Dr Rose Capp, policy adviser for Dementia Australia and lecturer of applied gerontology at Flinders University. In her book Demystifying Dementia, Capp writes about the two types of long-term memory (explicit and implicit) and how “music is stored in different parts of the temporal lobe from other forms of long-term memory”.

“[Implicit memory] is often labelled unconscious or automatic because it requires no active effort,” Capp writes, using the example of riding a bike. “Decades might go by, but when you hop back on, you can ride without thinking what to do.” When people living with dementia start to lose their explicit memory – the part of the brain that recalls previously learned information and “requires conscious effort” to maintain – implicit memory, where scientists believe elements of music are stored, can remain.

Hayes and pianist Malcolm Edey – who along with assistant conductor Jemma Orchard was a founding member of the GLC music team – fill the weekly run sheet with familiar songs for the choir: there’s jazz, blues, musical numbers and the reliable Happy Birthday.

“One of the biggest things that happens for people with dementia is they start to withdraw, or stop engaging,” Hayes says. “For this group, we have to be very careful to not create situations where people feel threatened, where [they feel] they’ve got to actually respond verbally [when they] can’t remember words.”

People can sing along if they feel like it, or sit and watch others. “We’re open to people of all abilities. That’s the point of it. And we sound surprisingly good, so it’s very satisfying,” Edey says. The added physical stimulation from the rehearsals – choristers are encouraged to “move and groove” from their chairs – is also beneficial to supporting abdominal breathing, posture and mobility of people living with dementia, says Capp, who runs a residential aged care choir in Brighton East, Victoria.

Similar choirs have existed around Australia since 2016. GLC is modelled on Canberra’s Alchemy Chorus; Dubbo’s Sing Out choir had its first major concert last year; and University of Melbourne music therapist Dr Zara Thompson runs a Rewire Musical Memories choir in Ivanhoe, north-east Melbourne. Choir leaders meet regularly via Zoom as part of the Dementia Inclusive Choirs Network across Australia, for which Thompson is the network convener.

A small number of trial choirs have been conducted in other countries. An independent study in France brought together a group of people living with dementia, carers and volunteers for 14 rehearsals ending with a Christmas-themed concert in 2018. Despite some difficulties, those living with dementia “showed capacities to learn new songs, integrate rhythmic accompaniments, [and] sang in different languages”, Jean-Bernard Mabire, who co-authored the study, says. Even though “several participants no longer remembered that they had sung in front of an audience”, Mabire said the immediate benefits he observed were “more important than the memory of the event”.

Thompson’s choir was born out of a similar research trial in 2016. “Our members were so adamant that it could not stop after the research, they forced them to hire me,” she laughs. “They had [me] sign a contract saying we would never let it finish.”

What distinguishes dementia-inclusive choirs from other support groups, Thompson says, is that being a participant doesn’t mean sitting in a circle and being made to talk about your problems. “You don’t have to be too vulnerable. It doesn’t feel clinical. The music holds the space so that they can just look at someone and know the other person knows what they’re going through.”

People with dementia, and their caregivers, are often at high risk of depression. Loneliness and isolation are believed to exacerbate symptoms of dementia. While the benefits of singing and community have been found to impact symptoms of dementia, and address loneliness, such choirs – often very cheap to attend – can still be hard to come across. All choristers stress the importance of government funding to ensure choirs like theirs survive, and so more can be opened.

“There are a lot of people with dementia who need stimulation [and who] could come to [choir] and benefit a great deal. But we had to find it ourselves,” Leigh says.

Denise Jamieson spends nearly an hour driving from Peakhurst, in southern Sydney, to bring her husband, Bruce, who is living with advanced dementia, to rehearsals. Bruce used to sing in the Sydney Male Choir, and while his ability has changed since then, “it’s good because I see [him] doing something that he enjoys, and something that he has enjoyed for a long time,” Denise says.

A week after Bruce – who has difficulty speaking – sung his favourite song, Happy Birthday, for Guardian Australia’s video team, I return for another visit. Bruce sits in the hall tapping his hands and feet along to Singin’ in the Rain. I don’t expect him to recognise me, let alone remember me, but as soon as I move to find a spot, he points in my direction and smiles. And the singing goes on.