About

The study investigates the potential impact of music therapy on enhancing the lives of children with Batten disease, a form of childhood dementia that causes blindness, epilepsy, profound cognitive decline and premature death. There is currently no known cure; however recent studies (Elmerskog, 2016) have shown that music can have a significant effect on the lives of these children.The study specifically aims to ascertain the extent to which music can have a positive impact for children in their varying stages of Batten Disease, by focusing on how music interventions can help to promote (a) the maintenance of expressive communication when speech is in decline (or has ceased); (b) a dayto‐ day understanding of what is occurring, where, with whom and when; (c) the recall of memories; (d) social inclusion through musical participation, and importantly (e) a sense of emotional well‐being and support as the disease progresses to its inevitable end.Over the course of two years, 12 UK children with Batten Disease in music therapy sessions will be observed systematically and data will be gathered using the Sounds of Intent framework and a music therapy assessment tool to track the children’s progress. Parents and professionals will also contribute to the data collection process by submitting video diaries, and throughout the project, new music resources will be devised, trialled and made available to parents and professionals to use throughout the research.From the findings, a resource package of online resources, education tools, and activities will be disseminated following the research, and the new knowledge and skills gained will benefit not only those children involved in the project directly, but also future generations of young people affectedwith Battens Disease.