Music as a Therapeutic Tool for Children with Rare Dementia

When most people hear the term "dementia," they typically associate it with memory decline in older adults. However, a much rarer form of this disease can affect children, known as childhood dementia or Batten disease. This genetic disorder impacts the brain and nervous system, leading to severe symptoms such as vision loss, movement difficulties, and cognitive decline. Current estimates suggest that approximately 150 to 200 children in the UK are living with this heartbreaking condition.

Batten disease usually manifests early in life, between 12 months and 12 years of age. Since it is inherited, it can affect multiple members within a family. Unfortunately, there is currently no cure, and most children with Batten disease do not survive into adulthood. Although some drugs can slow disease progression, access and approval for these treatments remain inconsistent, leaving many families without effective options.

Supportive care remains the mainstay of treatment, focusing on managing symptoms through physiotherapy, medications, and educational support. However, these services are often fragmented and difficult to access consistently, which emphasizes the need for alternative therapeutic approaches. Among these, music therapy has gained attention for its potential benefits.

Emerging research suggests that music and music therapy could provide comfort, improve emotional well-being, and support communication in children affected by Batten disease. While studies are still in the early stages, findings indicate that music therapy can help children express themselves, access memories, and enhance their quality of life. For example, some children who have lost speech have been able to sing or use musical activities to communicate.

Music therapy involves engaging with music through singing, playing instruments, songwriting, and listening. It can help alleviate pain and anxiety, promote social interaction, and foster emotional connections. A notable case involved a ten-year-old girl who used weekly music sessions to express her feelings and memories, creating lasting songs that connected her to her loved ones after her passing.

Neurologic music therapy, a specific form of treatment that applies musical exercises to improve speech, movement, and cognition, shows promise based on its success with other neurological conditions like Parkinson's disease, dementia, cerebral palsy, and Rett's syndrome. Although direct research on its effects in children with Batten disease is limited, the benefits seen in similar conditions suggest potential for helping manage symptoms such as seizures and mobility issues.

The powerful impact of music on the brain is partly due to its ability to activate multiple regions involved in movement, memory, emotion, and language. This widespread activation may help stimulate remaining healthy areas of the brain in children with Batten disease, offering emotional support and a sense of identity.

While larger, targeted studies are needed to confirm and expand these findings, early evidence demonstrates that music therapy can play an important role in supporting children and their families by reducing anxiety, improving communication, and fostering moments of joy and connection during difficult times. Supportive therapies like music can offer comfort and enhance quality of life, even as the disease advances.

Source: https://medicalxpress.com/news/2025-05-children-rare-dementia-music-powerful.html