‘We all have unique relationships with music’

I completed my training in 2011 and worked in a range of special educational needs settings, in adult mental health, then most recently in a child development service for an NHS Trust. But back in 2006 I was researching what music therapy is, and I had perhaps my first encounter with the impact and power of music. I was with a music therapist working with a group of older adults with dementia. This group of adults who were all quite withdrawn and not connecting with each other, came together through the music. They were in the here and now, and had this beautiful and moving shared experience together. It was the music and the music therapist who facilitated that. It was seeing that, feeling that, being part of it… that made me think 'this is how I want to be using my music'.

I saw people who were quite withdrawn and physically quite closed off. Their postures suggested they weren't really available for contact, with their heads bowed and arms folded and legs crossed. When the music started to work and reflect the feelings in the room, that all changed. Heads were lifted, eyes started to look around and engage with other people, social gestures started happening, people started making contact. The body postures changed and then movement started. People couldn't resist tapping along to the beat, whether that was a hand on the side of a chair or their foot tapping, or using their whole body to physically move in their seats. It did get to the point where we were all up on our feet dancing together. It was just incredible.

I was really taken with how the music therapist was able to modulate what she was doing. She was able to temper the music so that it didn't become too much, but it continued to be motivating and stimulating enough. She managed to make it what it needed to be in that moment for those people. It was very much tailored to them moment by moment. She was very carefully taking in what they were doing and reflecting their movements and the feeling that was in the space. If someone started singing a little bit of a melody she'd weave that into the music that she was improvising so they could hear they'd been acknowledged and heard, and you could see them recognising that acknowledgement of them. That's when you know you've got those really powerful connections taking place. It was beautiful, it was amazing.

I've not recently worked with people living with dementia but I have been experiencing other music therapists' work by observing them or visiting them, and I've been following the research developments that have been happening in this area. I previously worked for the British Association for Music Therapy and we had an awareness-raising week we ran every two years. In 2015 we chose to focus on embedding music and music therapy into dementia care pathways. That's where my first contact came with the Utley Foundation. Music and Dementia is a strong area of focus for them and I came on board with the Music for Dementia campaign in 2018 when the opportunity arose for me to join, which I was absolutely thrilled to do.

It's been fantastic. We're really of the moment: everybody working in this space is so determined to see change happen for people living with dementia. We don't have a pharmacological answer for dementia and I don't know when that's coming – I'm not sure any of us are. What we do know is we have this power, to enhance and enrich the quality of life for people living with dementia. We can do that through music in its really rich, broad and varied ways. Everything from a playlist right through to music therapy. One of the delights of music is you can tailor it to make it personal. Your playlist or ways of experiencing music will be different to mine but that's fine, that's what music is there for. We all have unique relationships with it.

The role of our campaign is to make sure everybody has access to the right music for them at the right time and in the right ways. Our approach in encouraging people who are working with people with dementia is to think about a person's potential and work with this and the skills they have, as well as skills they may acquire through musical experiences. Rather than a deficit model approach we encourage a working with potential approach. That way, people with dementia can be contributors to their care and have a sense of agency and autonomy. We hope to move away from music being something that is done to people with dementia to an experience that they have a central role in creating.

There's a whole range of ways of using music to improve someone's daily experience. When people have been diagnosed recently and are still living at home they may feel concerned about losing contact with people and there are a variety of local groups available. Whether that's a participatory music group or a dementia cafe that's got a music element to it, or it might be working with an orchestra who runs dementia friendly performances. It could be about having a music therapist come and work with you at home if you need that kind of psychological support. We're also thinking a lot about care settings and how they use music in open spaces or how they might support daily tasks. We know music can be incredibly motivating for people living with dementia. They often experience quite high levels of apathy and agitation, and we know music can counter those two feelings. With care settings, we're thinking about how you can drop music in at times of day and in ways that can really help to improve someone's experience of their day.

In my role I'm involved with everything from helping an individual care home to think about what it is they're doing with music and how they can increase it, right through to informing policy and influencing various different sectors involved with supporting people with dementia. The other thing I feel very fortunate to be doing is drawing people together. We know there's a huge range of excellent work going on out there but not everyone is aware of each other's work. I might speak to someone this afternoon doing excellent work in Devon, but that work in Devon is looking very similar to some work in Cumbria so I might connect them up so they can share best practice and think about how they can offer each other support. Equally there might be someone next door in Devon who is doing something very similar and they could be signposting people between their services and sharing resources.

I'm also managing the PR campaign and do a lot of liaison with our ambassador Lauren Laverne, presenter of BBC Radio 6 Music's Breakfast Show and current presenter of BBC Radio 4's Desert Island Discs. We know Lauren's an incredibly passionate advocate for the power of music and felt she was a perfect fit for us. When we approached her she very quickly came back and said she'd love to be involved. We feel very honoured to have her as the face of our campaign. With all the experience she brings as a musician, but also in her radio roles, she has the respect of many people not least in the music industry. We need people to get behind the campaign and understand the power of music for people living with dementia… she beautifully articulates why music is so important.

We've got a huge awareness-raising campaign, a website with a great deal of information, resources and tools people can use. We know there's lots of information out there but it's located in lots of different places. We're sharing this very broadly with sectors, encouraging colleagues to share their resources and findings, so people are kept up to date with the latest research, practice and evidence.

The other thing we're doing is trying to connect people locally. In September we launched an online musical map, which allows people to type in their postcode and view at a glance all the dementia-focused musical provision in their area. These musical choices range from singing groups, choirs, music therapists to relaxed live musical performances. This is a really powerful tool and we hope people will start talking to each other, as well as helping us spot gaps in provision.

The reaction to the campaign so far has been overwhelmingly positive. People seem so grateful and people who have got in touch have told us about the difference music has made to their lives. There's lots of people out there doing this brilliant work and they're really excited to get behind a shared vision and message. If we speak together on this then we're much more likely to bring about change in dementia care where music has this fundamental, central role.

For more information on Music For Dementia 2020 visit www.musicfordementia2020.com