Our publications 

Submission to Inquiry into the recognition of unpaid carers

Childhood Dementia Initiative's submission to the House of Representatives Standing Committee on Social Policy and Legal Affairs inquiry on the provisions and operation of the Carer Recognition Act (2010).

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Newborn screening and childhood dementia, June 2023

This outlines Childhood Dementia Initiative's position on newborn screening.

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Childhood Dementia Symposium 2023 Report, May 2023

This reports on the outcomes and feedback on the 2nd Childhood Dementia Symposium held in Sydney in March 2023. The Symposium brings researchers, clinicians, industry and patient representatives together to accelerate therapeutic options for children with dementia.

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Childhood dementia and the National Disability Insurance Scheme (NDIS), April 2023

Families report that while the NDIS is vital, the progressive needs of their child(ren) are not understood or accommodated. Childhood dementia and the National Disability Insurance Scheme (NDIS) outlines the benefits of appointing specialist advisors, which include efficiencies for the NDIA. It also provides information on current family experiences and the need for change.

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‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services, March 2023

Developed by international management consultancy, Nous Group, this report gives insight into ‘typical’ family experiences navigating care and support services in Australia. It revealed that families affected by childhood dementia experience significant challenges accessing appropriate care.

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Submission to the Public Consultation Paper for the National Dementia Action Plan, January 2023

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.

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State of Childhood Dementia 2022

This report explores the state of childhood dementia across policy responses, research progress and the support available for children and families. Published: September 2022.

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Childhood Dementia Global Landscape Analysis: Guiding High Value Investment in Global Childhood Dementia Research, May 2022

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

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Report of the Inaugural Challenging Childhood Dementia Symposium, March 2022

This report details the outcomes of the Challenging Childhood Dementia Symposium, which was held on 1 March 2022.

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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. Learn more about this series.

Childhood Dementia Matters 1: Palliative care perspectives and experiences, November 2021

This document provides a summary of the key issues and comments that emerged from a consumer roundtable hosted by Palliative Care Australia and Childhood Dementia Initiative. The roundtable provided participants with an opportunity to discuss their perspectives on paediatric palliative care and to highlight their own experiences and challenges. Direct quotes from roundtable participants are presented throughout this summary document.

Download Childhood Dementia Matters 1

Childhood Dementia Matters 2: What families want health professionals and service providers to know, October 2022

This document summarises key themes that emerged during a series of focus groups facilitated by Childhood Dementia Initiative. The focus groups invited participants to share their insights on working with health professionals and service providers. Participants shared challenging and positive experiences and what they most wanted the professionals working with them to know.

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Childhood Dementia: The case for urgent action, November 2020

Childhood Dementia Initiative's white paper highlights the size, scale and wide-reaching impacts of childhood dementia. Importantly, it outlines the overwhelming opportunity to act.

Learn more & download the White Paper

Childhood Dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society, November 2020

This burden of disease study was prepared by THEMA Consulting. The study quantifies for the first time the burden of childhood dementia in Australia on children, their carers, the healthcare system and society.

Download the burden of disease study

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.