Music and Batten disease

Batten disease is a rare neurodegenerative condition that affects approximately 150-200 children and young people in the UK. Children experience gradual loss of skill over time, and most do not live past their adolescent years. Present research focuses upon clinical trials in enzyme replacement therapy; however, leading research in the field recognises the need for improved education strategies.

Although under-researched, music has been recognised as a key support mechanism for individuals affected by Batten disease. Research advances in neuroscience and music therapy suggest that music interventions are successful for neurodegenerative conditions. As yet, research has not investigated the impact of music or music therapy for childhood conditions.

In 2022, educational staff were interviewed on the impact of music for the child they supported with Batten disease. Results showed that educational staff observed how music helped preserve skills, where in the absence of music, the skills of children with Batten disease might otherwise deteriorate. Interview data outlined how music could enhance children’s self-expression and communication and complement pre-emptive teaching approaches to preserve the child’s independence in the future.

To develop this research further, the Worshipful Company of Musicians is funding a project looking into the impact of music for children with Batten disease (or childhood dementia), with a focus on parent experiences. The project aims to capture the experiences, perspectives and perceptions of parents and caregivers of child/ren with Batten disease.

Over the course of a year, parents and carers will be invited to take part in online interviews exploring the meaning of music for their child/ren. A research assistant at ARU will be holding online interviews with parents, and Dr Rebecca Atkinson will deliver the thematic analysis.

Alongside the research interviews, The Worshipful Company of Musicians will deliver three immersive musical experiences (or concerts) for the children in schools or centres in London by the Young Artists' Programme. The Young Artists' Programme will lead on contact with the schools and booking musicians for each event.

The project’s findings will create a dialogue between the experiences of those in education with the experiences of parents and carers, and the observed impact of music, supporting the potential use of music therapy interventions for children affected by Batten disease.

The research will also provide preliminary evidence to support the development and review of educational guidance and policy to incorporate music therapy interventions for childhood neurodegenerative diseases.

Further research could optimise music interventions considering implementation, adaptability, transferability, and feasibility in other contexts, to support the use of music in wider care pathways for children with Batten disease.