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Childhood Dementia - the facts, symptoms and lived experience


Institution: Childhood Dementia Initiative - NSW, Australia

Introduction:, This workshop will explore what childhood dementia is, the symptoms children and young people experience and statistics associated with it. Through a series of videos, families share their experience and talk about what they need from the health system. The materials presented in this workshop have been developed with funding from the Federal Government and are informed by a burden study prepared by THEMA Consulting: Childhood Dementia in Australia.

Background: Childhood dementia is an umbrella term encompassing 70+ rare and ultra-rare genetic conditions. When considered collectively these impact 1 in 2800 live births and result in more than 90 premature deaths per year in Australia. For comparison, there are 92 deaths per year in Australia from cancer in children aged 0–14 (Australian Institute of Health and Welfare, 2020). Until recently, these 70+ conditions have been considered individually, with little recognition, research or support. Collectively addressing childhood dementia provides the opportunity for greater scale, impact and improvement of both services and therapy development.

Aims/Objectives: The audience will:
Understand what childhood dementia is, its causes and symptoms;
Understand that when considered together, the disorders that cause childhood dementia cause a relatively high proportion of paediatric deaths;
Gain further insight into the progressive nature of the condition and the wide reaching impacts of dementia on children and their families;
Consider how services can more appropriately meet the needs of childhood dementia consumers.


  • Ms Gail Hilton

    Head of Programs - Care & Quality of Life Childhood Dementia Initiative - Sydney, Australia

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