The power of music: Yorkshire man reunites with band members in support of young onset dementia campaign

He’s referring to his experience of living with young onset dementia, a diagnosis that he received in his early 60s. Now 64, Jonathan is recently retired from the music business, but playing and listening remain a major part of his life.

His self-described “first love” inspired the music-themed focus of a campaign working to create a voice and national platform for young onset dementia. At the end of last month, Jonathan got together with members of his old band – Leeds-based City Limits – to film a music video.

Showing Jonathan and his four former bandmates ‘then’ and ‘now’, it highlights the lasting power of music to people with dementia. Back in the summer of 1977, the then manager of City Limits convinced Radio 1 DJ John Peel to play the band’s debut single. Whilst the music was well received, it didn’t produce a record deal and the five young musicians fell back on their day jobs.

Nearly 40 years later, interest in City Limits’ music began to surface from record collectors and in 2017 the band briefly reformed to release and perform an album. Fast forward to now and the bandmates met again at Bowcliffe Hall to film a music video in support of the U&ME Campaign.

The campaign, by the North Yorkshire-based Dementia Forward charity, which provides support, advice and information to people affected by dementia, has three main objectives – to raise awareness of young onset dementia and remove stigma, to provide age-appropriate care and support, and to find a cure.

For Jonathan, it’s an opportunity to highlight young onset dementia and its impact, whilst challenging the belief that people with the diagnosis can no longer do certain things. Jill Quinn, the CEO of Dementia Forward, says music can be a powerful way to communicate. She hopes the campaign influences people to think outside of traditional settings and activities when caring and supporting people living with young onset dementia.

Dementia is referred to as young onset when symptoms begin at an early age – usually between 30 and 65-years-old. Dementia Forward explains how the impact of a diagnosis at a young age can be very different to a diagnosis later in life as people may well still be working, have family responsibilities and often find it difficult to find age-appropriate support and meet other people in the same situation.

Last October, to mark its 10th anniversary, the charity launched the U & ME campaign, kickstarting a ten-year vision to “create a voice for young onset dementia” and creating the National Young Onset Dementia Day. Dementia Forward currently runs services for people with young onset dementia and those behind it hope its model for support that can be replicated across the country.

Jonathan, who worked as a sales director for Virgin Music and in commercial operations for EMI, inspired the campaign after moving back to Yorkshire from London, where he had received his diagnosis. His close friend Peter Deaman approached Dementia Forward, wanting to to help Jonathan and his wife Jo and also raise awareness of young onset dementia.

Coming up in May, Dementia Forward and Bowcliffe Hall are hosting a live music celebration for people in Yorkshire living with young onset dementia, their families and carers. And Jill, who was made MBE in the latest New Year’s Honours, will host the first young onset dementia U&ME Conference for government, dementia charities and service providers.

The conference will set out the 10-year plan to increase awareness and ensure specialist, age appropriate care and support is available, initially in Yorkshire and then nationally and Jill will also share details of the charity's proposed music therapy U&ME Garden.

Jonathan has also recorded a guitar solo for a U&ME music track. It is set to become a powerful anthem for the campaign for many reasons, but principally because music for so many people like Jonathan is what will always make them tick.