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Presentation Description
Institution: Childhood Dementia Initiative - NSW, Australia
Introduction:, This presentation 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 presentation have been developed with funding from the Australian 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 genetic conditions that impact 700,000 children and young people globally. In Australia, childhood dementia causes more than 90 premature deaths per year; for comparison, there are 92 deaths per year in Australia from cancer in children aged 0–14 (Australian Institute of Health and Welfare, 2020). Collectively addressing childhood dementia provides the opportunity for greater scale, impact and improvement of both services and therapy development.
Aims: The audience will:
- Understand childhood dementia 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 wide reaching impacts of dementia on children and their families;
- Consider how services can more appropriately meet needs.
Presenters
Authors
Authors
Head of Programs - Care & Quality of Life Gail Hilton - Childhood Dementia Initiative
