Childhood Dementia Initiative is running a range of consultations with families impacted by childhood dementia. The goal is to better understand the lived experience of children and their families within the health system and other systems, such as disability and education.

“We’re interested in hearing from a range of families,” says Joanne Kershaw, from Childhood Dementia Initiative. 

The purpose is to unearth where there are challenges and opportunities for change. Consultation is being undertaken using ‘round table discussions’. These sessions let everyone share their thoughts freely and fully.

“Round tables are really important because they're different from a survey. We're not just collecting numbers, but we really get to hear things that we wouldn't otherwise know,” says Kershaw.

A first round of consultations has been undertaken together with New South Wales Health (the health department in Australia’s most populous state). 

Childhood Dementia Initiative will conduct round table discussions across the rest of the country in 2024. This will ensure an understanding is built on state-specific challenges and opportunities.

Participants for the round table discussions will be recruited from the Childhood Dementia Advocates program with different experiences of childhood dementia, including bereaved families.

If you would like to learn more about these or other future consultation opportunities, please get in touch at or join the Family Advocates Program to connect in to a range of opportunities to contribute to change.

In this video, Joanne shares the value of round table discussions: