What is childhood dementia?
Childhood dementia is a rare brain condition that affects one in every 2,900 babies globally.
Childhood dementia can cause the same symptoms as adult dementia, including decline in cognitive ability, problems with attention and concentration, memory loss and learning difficulties, confusion, emotional disturbance, personality and behavioural changes and sleep disturbance.
Unlike adult dementia, childhood dementia can also cause other symptoms, including seizures, loss of vision and hearing, movement disorders and involvement of other organs and physiological systems.
The cause of childhood dementia is different to adults; adult dementia can be caused by over 100 medical conditions, where as childhood dementia is the result of over 100 different genetic conditions, including leukodystrophy
To find out more about childhood dementia: What is Childhood Dementia?
Childhood Dementia Initiative
There are several conditions that cause dementia in children, including many leukodystrophies. Initiated in Australia, this initiative aims to provide a published global consensus on the definition of childhood dementia.
Currently health policy and decision makers are approached on an individual condition basis, by using a collective term we can highlight the common challenges of everyone facing these conditions with increased impact. For example, did you know that per patient, childhood dementia attracts 12 times fewer clinical trials than childhood cancer, even though the estimated numbers of premature deaths per year is similar to childhood cancer.
We are a Patient Group Partner for the Childhood Dementia Initiative and are committed to supporting the project’s vision and outcomes.
Who are the Childhood Dementia Initiative?
Childhood Dementia Initiative aim is to accelerate the development of treatments and improve accessibility and quality of care for children with dementia. The organisation leads a paradigm shift by driving solutions for all of the conditions that cause childhood dementia as a collective. This approach compels awareness and allows for greater efficiencies, scale and impact.
To find out more about the organisation: Childhood Dementia Initiative
Childhood Dementia Care Report
Churchill Fellowship report, ‘Childhood Dementia Care: Australia’s Path Forward’, has been published with The Winston Churchill Memorial Trust. Gail Hilton is a co-founder of Childhood Dementia Initiative, and Head of Programs, responsible for driving systemic change that has the potential to transform the landscape of care for childhood dementia. As part of the project she was awarded a fellowship from the Churchill Trust to produce this report.
Alex TLC and the support we provide our community is discussed within the report. The report also mentions the Inherited White Matter Disorders (IWMD) Service and our role as lead patient representative.
To read the Churchill Fellowship report: Childhood Dementia Care report
Childhood Dementia in Scotland 2025 Report
In 2023, the Scottish Government became the first national government to recognise childhood dementia in a national dementia strategy, marking a significant milestone in the global understanding and policy response to paediatric neurodegeneration.
This report highlights the urgent need for a coordinated national response. Families affected by childhood dementia face significant challenges: delayed diagnosis, fragmented and inequitable care,
inadequate health, social and educational support, and a lack of psychological and financial assistance.
To read the report: Childhood Dementia Report
Attending events
We attend events to learn more about childhood dementia campaigns and projects. This includes awareness related events and conferences, which enables us to find out about developments in the field and how we can become involved.
Last year our CEO, Sara, attended a parliamentary event in Scotland in December. The Childhood Dementia Awareness Raising event was held at the Scottish Parliament. The event included a presentation about ‘Childhood Dementia in Scotland 2025: A Report for the Scottish Government’, presentations from those with lived experience and networking opportunities.