When we hear the word “dementia,” we usually think of memory loss in older adults. But there’s another, much rarer form of the disease that strikes far earlier in life—childhood dementia, also known as Batten disease.
Batten disease is a rare but serious genetic disorder that affects the brain and nervous system. It is unknown how many children in the UK are living with this heartbreaking condition, but recent estimates show between 150 and 200 are affected.
It often appears in early in life—usually between the ages of 12 months to 12 years. The condition can lead to problems with vision, movement and thinking. And, because the condition is genetic, it often means that more than one child in a family can be affected.
Right now, there’s no cure for Batten disease. Sadly, many children with the condition don’t survive into adulthood. Scientists and doctors are working hard to change that, but there’s still a long way to go.
While a promising drug has been shown to slow progression of one type of Batten disease, access to it is now under review in the UK. This leaves many children and families at risk of losing this lifesaving treatment.
Without a viable cure, treatment for Batten disease mainly focuses on easing symptoms. Children often need physiotherapy, prescription drugs and educational support. But this care has been shown to be fragmented, with services spread across different providers. This lack of coordination makes it challenging for families to access consistent support.
Families are open to looking for alternative forms of therapy—such as music therapy. Emerging research suggests that music and music therapy can be beneficial for children with Batten disease.
Music therapy
Researchers have begun exploring music therapy as a way of managing symptoms and possibly enhancing quality of life for children with Batten disease. Research in this area is still in its early stages. But if proven to be effective, music therapy could offer new opportunities and comfort to patients and their families.
Music therapy uses music to help with emotional expression, psychological health and functional improvements. A typical music therapy session involves playing instruments, singing, listening to music or song writing to help patients improve psychological well-being, and cope with emotional or communication difficulties.
For children with Batten disease, clinical researchers consider music therapy—when used alongside other standard therapies (such as physiotherapy and speech therapy)—to alleviate pain and anxiety in patients and improve their social interaction and enjoyment.
In one case study, it was found that weekly music therapy sessions helped one ten-year-old child with Batten disease better express her feelings and memories through writing and singing songs. Not only this, these songs became a lasting legacy, helping loved ones stay connected to her after she passed away.
An international survey of 182 parents and professionals who support children with Batten disease also found music therapy was beneficial. Around 80% of the people in the study said music helped their children communicate. In some cases, children who could no longer speak were still able to sing. Music also helped the children access memories, and generally improved their quality of life.
One specific strand of music therapy is neurologic music therapy. This approach can help people with neurological conditions manage their symptoms and function better in their everyday life through practical musical exercises. This is done through specific singing or rhythm exercises to help with speech, or targeted movement activities to help with mobility.
Currently, no research has been conducted on the use of neurologic music therapy for children with Batten disease. But, research on other neurological conditions shows it can be very beneficial.
For instance, research shows neurologic music therapy can improve speech, language, cognition and movement for some Parkinson’s sufferers and quality of life and well-being for adults with dementia.
Studies have also shown the practice can help children with neurological conditions similar to Batten disease, such as cerebral palsy and Rett’s syndrome. When added to standard rehabilitation programs that target motor, language, movement and psychological goals, neurologic music therapy increased brain plasticity (meaning it strengthened connections in the brain).
The children who received the therapy became more engaged and focused. These findings indicate that adding music therapy could speed up progress toward rehabilitation goals.
For children with epilepsy, listening to music has even been shown to reduce the number of seizures over a six month period. Many children with Batten disease experience epileptic seizures which can become more unmanageable as the disease progresses. This suggests that music therapy could potentially be useful for managing seizures in children with Batten disease.
The uniquely powerful effect of music could be explained by the fact that it activates multiple regions of the brain at once—including those linked to movement, memory, emotion and language.
This global activation can be especially helpful for children with Batten disease, as it may stimulate areas of the brain that are still functioning. Music may also help with emotional expression and social connection, offering comfort and a sense of identity even as the disease progresses.
While early findings from this field are promising, larger and more targeted studies are needed to confirm the benefits of music therapy for children with Batten disease and explore how it might be integrated into standard care.
As Batten disease progresses, families face the heartbreaking reality of their child’s diminishing future. Many turn to supportive therapies and palliative care in their child’s final stages of life.
Early findings on music therapy suggest that it may help children with Batten disease express themselves, stay connected and hold on to moments of independence for a little longer.
This article is republished from The Conversation under a Creative Commons license. Read the original article.
Citation:
For children with a rare form of dementia, music could be a powerful therapy tool (2025, May 12)
retrieved 12 May 2025
from https://medicalxpress.com/news/2025-05-children-rare-dementia-music-powerful.html
This document is subject to copyright. Apart from any fair dealing for the purpose of private study or research, no
part may be reproduced without the written permission. The content is provided for information purposes only.
When we hear the word “dementia,” we usually think of memory loss in older adults. But there’s another, much rarer form of the disease that strikes far earlier in life—childhood dementia, also known as Batten disease. Batten disease is a rare but serious genetic disorder that affects the brain and nervous system. It is unknown how many children in the UK are living with this heartbreaking condition, but recent estimates show between 150 and 200 are affected. It often appears in early in life—usually between the ages of 12 months to 12 years. The condition can lead to problems with vision, movement and thinking. And, because the condition is genetic, it often means that more than one child in a family can be affected. Right now, there’s no cure for Batten disease. Sadly, many children with the condition don’t survive into adulthood. Scientists and doctors are working hard to change that, but there’s still a long way to go. While a promising drug has been shown to slow progression of one type of Batten disease, access to it is now under review in the UK. This leaves many children and families at risk of losing this lifesaving treatment. Without a viable cure, treatment for Batten disease mainly focuses on easing symptoms. Children often need physiotherapy, prescription drugs and educational support. But this care has been shown to be fragmented, with services spread across different providers. This lack of coordination makes it challenging for families to access consistent support. Families are open to looking for alternative forms of therapy—such as music therapy. Emerging research suggests that music and music therapy can be beneficial for children with Batten disease. Researchers have begun exploring music therapy as a way of managing symptoms and possibly enhancing quality of life for children with Batten disease. Research in this area is still in its early stages. But if proven to be effective, music therapy could offer new opportunities and comfort to patients and their families. Music therapy uses music to help with emotional expression, psychological health and functional improvements. A typical music therapy session involves playing instruments, singing, listening to music or song writing to help patients improve psychological well-being, and cope with emotional or communication difficulties. For children with Batten disease, clinical researchers consider music therapy—when used alongside other standard therapies (such as physiotherapy and speech therapy)—to alleviate pain and anxiety in patients and improve their social interaction and enjoyment. In one case study, it was found that weekly music therapy sessions helped one ten-year-old child with Batten disease better express her feelings and memories through writing and singing songs. Not only this, these songs became a lasting legacy, helping loved ones stay connected to her after she passed away. An international survey of 182 parents and professionals who support children with Batten disease also found music therapy was beneficial. Around 80% of the people in the study said music helped their children communicate. In some cases, children who could no longer speak were still able to sing. Music also helped the children access memories, and generally improved their quality of life. One specific strand of music therapy is neurologic music therapy. This approach can help people with neurological conditions manage their symptoms and function better in their everyday life through practical musical exercises. This is done through specific singing or rhythm exercises to help with speech, or targeted movement activities to help with mobility. Currently, no research has been conducted on the use of neurologic music therapy for children with Batten disease. But, research on other neurological conditions shows it can be very beneficial. For instance, research shows neurologic music therapy can improve speech, language, cognition and movement for some Parkinson’s sufferers and quality of life and well-being for adults with dementia. Studies have also shown the practice can help children with neurological conditions similar to Batten disease, such as cerebral palsy and Rett’s syndrome. When added to standard rehabilitation programs that target motor, language, movement and psychological goals, neurologic music therapy increased brain plasticity (meaning it strengthened connections in the brain). The children who received the therapy became more engaged and focused. These findings indicate that adding music therapy could speed up progress toward rehabilitation goals. For children with epilepsy, listening to music has even been shown to reduce the number of seizures over a six month period. Many children with Batten disease experience epileptic seizures which can become more unmanageable as the disease progresses. This suggests that music therapy could potentially be useful for managing seizures in children with Batten disease. The uniquely powerful effect of music could be explained by the fact that it activates multiple regions of the brain at once—including those linked to movement, memory, emotion and language. This global activation can be especially helpful for children with Batten disease, as it may stimulate areas of the brain that are still functioning. Music may also help with emotional expression and social connection, offering comfort and a sense of identity even as the disease progresses. While early findings from this field are promising, larger and more targeted studies are needed to confirm the benefits of music therapy for children with Batten disease and explore how it might be integrated into standard care. As Batten disease progresses, families face the heartbreaking reality of their child’s diminishing future. Many turn to supportive therapies and palliative care in their child’s final stages of life. Early findings on music therapy suggest that it may help children with Batten disease express themselves, stay connected and hold on to moments of independence for a little longer. This article is republished from The Conversation under a Creative Commons license. Read the original article. Citation: This document is subject to copyright. Apart from any fair dealing for the purpose of private study or research, no
Music therapy
For children with a rare form of dementia, music could be a powerful therapy tool (2025, May 12)
retrieved 12 May 2025
from https://medicalxpress.com/news/2025-05-children-rare-dementia-music-powerful.html
part may be reproduced without the written permission. The content is provided for information purposes only.
