‘Empowering’ new song highlights lived experience of people with dementia

A song highlighting the lived experiences of people with dementia and their caregivers has been released today - a 'powerful' output of research by a University of Limerick music therapist.

We Will Tell Everyone is an original song that explores the experience of living with dementia, and the importance of public and patient involvement in dementia research.

According to statistics from The Alzheimer Society of Ireland, 64,000 people in Ireland are living with dementia, an umbrella term used to describe a range of conditions which cause changes and damage to the brain. It is estimated that the number of people with the condition - for which there is currently no cure - will more than double in the next 25 years.

We Will Tell Everyone stems from a research project by Dr Lisa Kelly, who undertook her PhD in music therapy at the Irish World Academy of Music and Dance at UL, exploring the role of music therapy for people living with dementia and their family caregivers. She was supervised by Professor Hilary Moss, Course Director of the MA in Music Therapy, who is at the forefront of UL research exploring how music can positively impact those living with dementia; and Professor Ita Richardson from Lero - The Science Foundation Ireland Research Centre for Software.

As part of her research, Lisa undertook a Public and Patient Involvement (PPI) project, working closely with those most affected by dementia. This cohort included Helen Rochford-Brennan, Kevin Quaid and Gerry Paley - who are all living with various types of dementia, with support from their family and friends Carmel Geoghegan, Helena Quaid, and Nuala Paley. All members of the Dementia Research Advisory Team at the ASI, the group is committed to raising awareness of dementia and breaking the stigma of a dementia diagnosis.

"In our first meeting, Helen said something that stuck with me for the remainder of my research journey: 'we don't want more research that sits on a shelf. We want deliverables that will make an impact for people with dementia'. This sentiment stuck with me and influenced the research we conducted as a team together going forward," explains Lisa.

As the research project unfolded, Lisa says, conversation organically turned to the group's relationship with music; this "planted the seed" of how she could share her knowledge and skills with them and provide an opportunity to share their voices and raise awareness to a wider audience.

The result is We Will Tell Everyone, featuring the PPI participants - known collectively as The Memory Lane Heroes; esteemed songwriter and former course director of the MA in Songwriting at UL, Carl Corcoran; and the Irish World Academy 'Nasc' Choir, conducted by Dr Kathleen Turner.

While the songwriting workshops were funded by PhD bursaries awarded to Lisa by the ASI and the PPI Network @UL, the professional recording was supported by the ASI, Anam Music Therapy, and the Irish World Academy.

Professor Helen Phelan, Director of the Irish World Academy, congratulated all involved in the project and recording: "We are so proud to support the production of this inspirational song - an excellent example of how music and the arts can be harnessed to create research with people, rather than on them."

For the contributors, the experience of sharing their lived experiences through song has been 'empowering'.

"To be able to tell the world that you can still dance, you can still drive, you can go on enjoying your life … it's powerful," says Helen Rochford-Brennan.

Gerry Paley added: "It really, really is very deep, very empowering, and a very, very strong, sincere message to others."

We Will Tell Everyone is available to listen to on all the usual digital platforms from August 1. A video version, created by Scott Robinson, can be viewed on YouTube.