‘We dance, we shake hands, we can start engaging with the other people around us. We become conscious of where people fit into our lives.’
This is the impact of a unique event, in the words of Richard Bones, a 65-year-old who was diagnosed with the brain condition five years ago. Called Dementia Disco, it creates a safe space and community not just for those living with the disease, but for loved ones too.
The idea came about in 2019, after Kate Derby’s dad, Brian, was diagnosed with Alzheimer’s at just 66 years old. Talking to Metro from her home in Stockport, she recalls: ‘He just seemed so much younger than all the other people we were coming across in the support groups in our area.
‘They were singing war songs around the piano, playing dominoes, doing crafts, and my dad was just looking at me, thinking “why am I here?”’
As Kate’s father’s dementia progressed, the impact weighed heavily on the family.
‘We had stopped going out and couldn’t go out for meals, as you might have to help someone with dementia eat, and there’s still lots of stigma around it,’ admits Kate.
To give their mum, Jan, a break, she and her brother Nick, along with their friend Phil Bostock, decided they needed to find a place where her dad go and feel comfortable.
At the time, they were watching the BBC Dementia Choir with Vicky McClure and realised how inspiring the power of music could be within the dementia community – something Kate had also noticed at home.
‘My dad went through a stage of just reading the newspaper aloud over and over, because a normal conversation was difficult. But if you put music on, in the right environment, he would come back,’ she explains.
‘He wanted to listen to Bruce Springsteen and Dire Straits. He’d start singing and be his old self again for a few minutes.’
Together the three came up with the plan to put on an early evening event that gave off ‘nightclub vibes’ with lights and music, for people with dementia to socialise and have a dance, along with their families and carers.
‘We really wanted a wedding reception vibe, cheesy music, and a chance to hang out with your family. Or, even to provide a date night, to get those people back to the couples that they were,’ she explains.
They set their first disco for July 2019, at the Heaton Mersey Con Club, where the warden offered the location for free and threw in a hot pot for everyone to eat, as her dad had also suffered from dementia.
‘We promoted it on social media, and put flyers everywhere we could think of. We managed to get 40 people to come, which was crazy,’ remembers Kate. ‘We thought it would just be the three of us and my dad on the dance floor, but people came and danced, it was just brilliant.’
Kate says being at the disco with her dad and being able to buy a drink and put Bruce Springsteen on, meant the world to her.
‘The last time I danced with him before that was possibly my wedding, in 2014. It was so lovely to see him smiling and enjoying the music, really special.’
For the first disco, Kate made a playlist on Spotify and used the club’s speakers to play classics from each decade – the ‘50s, to the ‘90s – so everyone would have something to dance to.
She also introduced little measures to make sure it would be accessible for all those attending. ‘Unlike a typical disco, which might have flashing lights, we have very subtle lighting, pointed to the floor, and we play music slightly quieter. But it still looks and feels very much like any disco,’ Kate explains.
Over time, word got out and the discos soon had to branch out into other venues in Cheadle Hulme and another in Poynton. Last year Dementia Disco became an official charity and they regularly fundraise to keep the events going and free to attend.
The backbone of the charity is its volunteers. Jean England decided to lend her time to the events in 2021, as her mum was diagnosed with dementia in 2010 and she saw how few activities there were for her dad to take her to.
‘If my dad could have had a place where he could have gone, like the Dementia Disco, that would have made a huge difference to him,’ Jean tells Metro.
Once everybody’s ‘chatting away and having a good time’, it’s her job to get them onto the dance floor, to have a safe boogie. ‘One lady – Sally – loves line dancing, so I’ll go and get the DJ to play her favourite music when we’re on the dance floor,’ Jean explains.
Kate adds that Sally was really excited when the Mayor of Greater Manchester Andy Burnham made an appearance at the disco recently. ‘She was so giddy when he arrived,’ she says.
‘Andy was so lovely with her. We got Elvira on, which is a popular line dancing song, and he got up on the dance floor. Sally was teaching him some line dancing moves – she was over the moon.
‘I just thought: “wow. We’re making a difference”.’
Though many people might assume the disco is for the person with dementia, Jean believes it is ‘even more for the carer’.
‘It’s a huge job, and I don’t think people understand how hard it is,’ she explains. ‘It can be very isolating, as carers can have difficulty going out. But coming to the disco gives them a place which is totally safe, where everybody’s friendly, and everybody understands.’
Many of those who help out found the roles thanks to the Royal Voluntary Society’s digital voluteering platform GoVo. Bren Foley is the resident Dementia Disco volunteer at the Cheadle Hulme disco, having spun decks in the 80s. He says 60s and 70s classics always go down a treat, as well as Motown music.
Bren sometimes even brings his band ‘Shamrock and Roll’ along, to bring the buzz of live music to the disco and will often wear a ride-on leprechaun costume.
‘I say we have a special guest – we call him Paddy – all the way from Dublin. It goes down really well. Last time I was talking to everyone on the dancefloor, and they could all remember Paddy’s name but not mine,’ Bren laughs.
Jean adds the disco often gets people dancing who have never met before, building a strong sense of friendship and community for those who would otherwise struggle to leave the house.
She says, ‘quite often people will dance in a circle because they feel safe holding hands with somebody else.
‘Some of the other disco goers are non-verbal, so they might just tap on the table, while some just like to hum, others whistle, it doesn’t matter – it’s about fun.
‘For a lot of them, music is memory.’
This is certainly the case for Richard – or, as he calls himself, ‘Rickety’ — one of the disco goers who is in the early stages of dementia.
‘I, and a lot of other people, find that I relate music to a time from my childhood, or from when I was younger. I like 70s and 80s funk music.
‘I see it in others – the music seems to light them up, the dancing takes them back to a time in history when they were living their lives, when they were building their future.’
As well as dementia, 65-year-old Richard lives with multiple chronic conditions including MS since he was 15, and has brain damage following a dementia-related fall.
He explains: ‘Dementia Disco and the people who run it are phenomenal. They have given me more of a focus in life.
‘I can actually meet, and start to have conversations and interactions with people, who are affected to some degree in the same way as I am, so there’s camaraderie there already.’
Richard, whose favourite song to dance to at the disco is currently In the Ghetto by Elvis Presley, says the disco is the perfect way to destigmatise dementia.
‘It creeps up on you from behind, and people don’t understand it. They think “you’ve got dementia? Piss off into that room, sit down and be quiet.” ‘But we are both normal, and affected. Here, there’s no expectation other than enjoyment.’
When Kate’s father passed away in 2023, many people involved with the project told her they would understand if she needed to take a step back.
‘But I said there’s no way we want to stop – I feel like it’s his legacy,’ she says. ‘It’s a gift that he’s left with us, and what a lovely way to remember our dad, to see this charity grow and to provide this joy to more and more people.’
Kate’s mum still goes to the Dementia Disco from time to time, and volunteers. They listen to Brice Springsteen and dance in her dad’s name.
‘I’m really proud of what we have created,’ said Kate. ‘It brings me so much joy, hearing people say what a great time they have had and that they will be back for the next disco.’
Click here for event dates and to find out more about Dementia Disco.
The Royal Voluntary Society GoVo recently launched thanks to support from players of People’s Postcode Lottery. To find out more click here.
