Global Consensus Project launched
Childhood Dementia Initiative has launched a groundbreaking global project to bring clarity, unity and momentum to the field of childhood dementia. The Childhood Dementia Global Consensus Project is the first international effort to establish a universally accepted definition of childhood dementia—an essential step toward transforming care, research, and recognition for children with dementia.
The more than 140 rare genetic conditions that cause dementia in children are described using a wide range of confusing and inconsistent terms. This lack of clarity creates significant barriers: it fragments research efforts, and leaves children invisible in health policy and care systems. Without a shared definition, the global community cannot effectively collaborate to improve outcomes.
Led by Childhood Dementia Initiative and facilitated by UK-based health consultancy 67health, the Childhood Dementia Global Consensus Project brings together expert voices from all six WHO regions—including clinicians, researchers, patient advocates and families. Using the Delphi method, a structured process for reaching consensus, participants will work together over 12 months to agree on the essential elements that define childhood dementia.
“This is a foundational step in building a global movement for change,” says Dr Kristina Elvidge, Head of Scientific Affairs at Childhood Dementia Initiative. “With one clear definition, we can unite research efforts, design better clinical care, and secure the visibility and investment these children urgently need.”
The project builds on Childhood Dementia Initiative’s success in Australia, where advocacy has led to policy recognition and millions in government research funding. By taking this work global, Childhood Dementia Initiative is laying the foundation for the next major step: a coordinated international research strategy, set to launch in 2026.
Childhood dementia terminology
Childhood dementia refers to a group of rare genetic conditions that cause progressive cognitive decline before adulthood. These conditions affect around 1 in 2,900 children and have devastating impacts on memory, learning, and basic functions. Most children will die before they turn 18.
Globally, childhood dementia takes a life every 11 minutes. In high income countries, childhood dementia causes as many deaths as childhood cancer. In other areas of the world it is estimated that the incidence of childhood dementia is twice as high due to late diagnosis and lack of access to treatments. Yet progress and investment in childhood dementia research and care are severely limited across the world. Inconsistent terminology and classification have prevented childhood dementia from being recognised as a global health priority.
Some of the terms applied to the conditions that cause childhood dementia include:
- Childhood Alzheimer’s
- Progressive intellectual and neurological deterioration (PIND)
- Progressive childhood encephalopathy
- Neurodegenerative disorders
- Neuroregressive disorder
“A standard definition and shared terminology is the first and most critical step to making childhood dementia a global health priority,” says Dr Kristina Elvidge, Head of Scientific Affairs at Childhood Dementia Initiative.
How to get involved
Childhood Dementia Initiative is inviting a range of stakeholders to get involved. Learn more about the project and how to get involved at: www.childhooddementia.org/globalagenda
Become a project partner
Dementia Australia (Platinum), Australian NPC Disease Foundation (Silver), MPS Society UK (Bronze), Wicking Dementia Research and Education Centre (Bronze) and Niemann-Pick UK (Bronze) have been confirmed as founding partners of the Global Consensus Project. In addition to generous financial support of this project, these organisations will connect Childhood Dementia Initiative with their networks and ensure that the project outcomes are disseminated far and wide.
If your organisation would like to partner with us on this project, please get in touch at hello@childhooddementia.org
