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.

Childhood Dementia Matters 1: Palliative care perspectives and experiences

This document provides a summary of the key issues and comments that emerged from the consumer roundtable hosted by Palliative Care Australia and the Childhood Dementia Initiative on 24th November 2021. Eight parents of children with dementia from NSW, ACT and SA (including primary carers and bereaved parents) participated in the roundtable event. Staff from the Childhood Dementia Initiative and Palliative Care Australia were also represented. 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.


Childhood Dementia Matters 2: What families want health professionals and service providers to know.


This document summarises key themes that emerged during a series of focus groups facilitated by Childhood Dementia Initiative. Twelve parents of children with dementia in Australia participated.
The focus groups invited participants to share their insights on working with health professionals and service providers. Participants shared challenging and positive experiences encountered when accessing support and care, and what they most wanted the professionals working with them to know. Focus groups took place in December 2021, January 2022 and February 2022. Direct quotes from these focus groups are presented in this document.

Childhood Dementia Matters 3: Family perspectives on the term ‘childhood dementia’, August 2023

This document summarises key insights that emerged during a series of focus groups, discussion and survey responses facilitated by Childhood Dementia Initiative. Twenty-five individuals from the families of children with dementia participated in total. Family voices and experiences were heard in focus groups, interviews and a short online survey.