The views and concerns of people living dementia, families/care partners and healthcare workers

Project Investigators Dr. Claire Burley, Prof. Henry Brodaty AO, Lynn Chenoweth, Anne-Nicole Casey


Program Overview:

Changed behaviours and psychological symptoms associated with cognitive decline are estimated to affect up to 90-percent of people living with dementia, strongly correlate with functional and cognitive impairment (Cerejeira et al. 2012) and contribute to approximately 30-percent of overall dementia costs (Burley et al. 2020; Costa et al. 2018; Beeri et al. 2002).

No study has addressed the views and concerns of people living with dementia about what they think should happen if they experience changed behaviours. This information could be used to educate families and carers, inform clinical guidance, and improve care practice. This qualitative study is using an integrated approach to investigate the views of people with dementia, their families or care partners and professionals in separate interviews, on care and appropriate use of language to describe the behaviours. We will also explore potential differences between women’s and men’s experiences. In response to the COVID-19 pandemic, we will also be asking participants about how their social and professional support activities and general health have been affected.

This project was accepted for a poster presentation at the Dementia Australia Forum (ADF) 2020 (postponed).

If you are someone living with a diagnosis of dementia and are interested in taking part please email

Qualitative Change Volunteer Callout Participant Information Sheet