On Thursday 11 December 2025, Childhood Dementia Scotland held a parliamentary event to raise awareness and share lived experiences from affected families. Sophie Thomas, Senior Head of Patient Services and Clinical Liaisons, recounts the core messages.
The meeting highlighted the urgent need for action on childhood dementia.
All the families in attendance were incredible, sharing honest and powerful accounts of the challenges they face every day.
Key messages that resonated most
Awareness is lacking:Â Childhood dementia remains largely unrecognised this must change.
Families need support:Â Children and families have been let down; immediate action is vital.
Hope through strategy:Â The initiative offers a pathway to learn, act, and give families hope, but time is critical.
Collaboration is key:Â Research and initiatives for adult and childhood dementia must be connected.
Political commitment:Â A clear framework and pathway supported at policy level is essential.
Investment matters:Â Funding for research and support services is urgently needed.
The meeting closed with strong commitments to share the report widely and ensure childhood dementia is included in future dementia policy discussions.
This is a significant step forward but we must keep momentum and ensure both research and frontline support remain priorities.
Childhood Dementia in Scotland report
Told through the eyes of families whose children have a form of dementia, Childhood Dementia Scotland have released a report that shines a spotlight on its devastating impact.
Help improve access to better care
The MPS Society, Niemann-Pick UK and the Batten Disease Family Association are working together to help raise awareness of childhood dementia to make sure that affected children and their families receive appropriate support, understanding and access to care.
If you are a parent and/or carer (18 years+) with children who have one of the conditions that affect the brain we support, you can help our efforts by completing a very short survey.
