In collaboration with Dementia Australia, the ADNeT Dementia Registry has facilitated two focus groups with dementia advocates (people living with dementia and carers). The purpose of this initiative was to ensure that communications provided to patients and carers about participating in the Dementia Registry incorporates the lived experience voices, and that it was clear, easy to understand and relevant.

During the two focus groups, participants reviewed the content and format of the proposed communications and provided invaluable insights into how to reformat the communications to make it user friendly for people living with dementia and carers. They expressed their preference for greater diversity in the way people with dementia are depicted in terms of gender, age, location and indigenous and culturally diverse backgrounds.

Participants at the two focus groups to provide feedback on proposed ADNeT Dementia Registry communications, facilitated by Joanne Kershaw (Dementia Australia) and Kasey Wallis, ADNeT Dementia Registry.