Supporting patients with Sanfilippo using music

05 Jan 2022

Sanfilippo Syndrome is a rare form of dementia with onset usually in early childhood, leading to progressive neurodegeneration. Early in the disease, patients experience behavioural symptoms like hyperactivity, anxiety, impulsiveness, and declining verbal communication. While there is currently no approved pharmacological treatments or a cure, different avenues can support patients by providing relief from disease symptoms to maximise their quality of life.

Music therapy is an evidence-based allied health profession that can support individuals with or without a disease. It involves the application of music to assist people in achieving greater health outcomes. Music therapy has been studied in other neurodegenerative diseases, like Alzheimer’s and Parkinson’s, and conditions like autism and depression. There is evidence that music therapy may help alleviate symptoms of ADHD like impulsivity and hyperactivity; also, it may increase cognitive performance in other dementias like Alzheimer’s.

A study led by researchers at the University of Deusto in Spain has described three patients with Sanfilippo who underwent music therapy. The case series aimed to collect data on the effectiveness of music therapy in improving the quality of life of patients with Sanfilippo and their families.

The study involved three individuals with Sanfilippo between 7-9 years of age: a brother and sister with type A and a girl with type B. The children participated in 45-minute individual music therapy sessions weekly, with a combined 20 sessions undertaken in the study. The researchers recorded psychological and physiological data and gained insights from parents and caregivers of patients.

Instruments like an acoustic piano, a Spanish guitar, and a marimba were often used in the sessions. At the start, children listened to an improvised welcome song or passage on the guitar. This was followed by more active and creative participation of the child through song or using instruments; songs involving their name and family members’ names could promote memory and speech, and instruments could encourage gross motor control. Each session ended with another improvised guitar piece, which may have reinforced songs created during the session.

When compared to the values before the session, the researchers reported increased psychological scores for the three children after their music therapy sessions: cognitive, communication, social and emotional scores all increased. There were different benefits noted for each child; for example, hyperactivity in one child was reduced during the sessions, and they also appeared to improve socially and emotionally, for example, with less crying as the session progressed.

This is encouraging data, but it should be noted that it was measured through observations from the researchers. Additional objective psychological measurements could be used in future studies to help demonstrate the benefits more clearly. 

Overall, the parents’ assessment indicated that music therapy had benefited their children, particularly socially and emotionally. However, the difficulties in assessing the effectiveness of music therapy were noted due to the progressive and degenerative nature of Sanfilippo.

Data measuring the physiological effects, including the effect on heart rate and blood pressure, was quite variable. The researchers state that this may be due to individual patients and their baseline levels and the low number of patients involved in the study. These factors make it difficult to measure conclusively whether the music therapy led to physiological benefits in the children.

This study provides a preliminary insight into the potential benefits of music therapy, a non-pharmacological avenue available to patients and their families. It supports the need for more research into this area, including studies with greater patient numbers and further outcome measures. A music therapy programme may be beneficial for not only patients with Sanfilippo but also those with other neurodegenerative disorders that impact verbal communication and cognition.