Our publications 

Response to National Dementia Action Plan 

Childhood Dementia Initiative has produced a submission in response to the draft National Dementia Action plan. The National Dementia Action Plan is a joint initiative between the Australian Government and Australia's state and territory governments. It is a 10-year plan to put people living with dementia, their families, and carers at the centre of all action on dementia.

State of Childhood Dementia 2022 report

This report explores the current state of childhood dementia across policy responses, research progress and the support available for children and families.

Childhood Dementia Global Landscape Analysis

The Global Landscape Analysis Report prepared by Research Australia gives a global picture of childhood dementia clinical research.

Symposium Outcomes Report

Details the outcomes of the Challenging Childhood Dementia Symposium held on 1 March 2022.

Childhood Dementia Matters series

The Childhood Dementia Matters series provides insight into various aspects of the lived experience of families who have children with dementia. Availalbe now: 

White paper

Our white paper, Childhood Dementia: the case for urgent action highlights the size, scale and wide-reaching impacts of childhood dementia.

Burden of disease study

The burden study prepared by THEMA Consulting, Childhood Dementia in Australia,  quantifies the burden of childhood dementia on patients, carers, the healthcare system and our society.

Presentations and Posters

Poster presentation

Presentation delivered by Head of Research, Dr Kris Elvidge PhD, at the Australian Dementia Forum in June 2021.

HealthData21 conference presentation

Sliding Doors: What Happens When Genomics Isn’t Integrated into Healthcare, was delivered by Childhood Dementia Initiative CEO, Megan Donnell at the HealthData21 conference in May 2021.

WORLD Symposium presentation

Head of Research, Dr Kris Elvidge PhD, presentation at WORLD Symposium in February 2021. The Symposium is the annual international research conference for lysosomal diseases.