Promoting Voices of People With Dementia: Examining Barriers to Participation in Residential Aged Care Consultation

Consultation is fundamental to a responsive aged care system. Cornerstone aged care reforms based on recommendations by the Australian Aged Care Royal Commission mandate resident consultation through the Quality Indicator Program and Resident Experience Survey, a new Aged Care Act and Strengthened Quality Standards. However, people with dementia are known to be underrepresented in research, particularly in residential aged care settings, and emergent scholarship indicates a similar exclusion from aged care policy and reform. Currently, the extent to which residents with dementia participate in consultation remains underexamined. Given the majority of aged care residents live with dementia, it is critical to ensure their voices are heard in consultation that informs aged care systems change. This paper critically examines intersecting domains of cultural, legal and structural barriers that are predicted to contribute to the exclusion of residents with dementia from direct participation in aged care consultation processes. This unaddressed exclusion is argued to be a form of epistemic injustice for residents with dementia that may contribute to unresponsive aged care delivery and high rates of proxy participation. Future directions propose data transparency of resident participation in aged care consultation, and a radical shift towards innovative approaches to ensure all resident voices are heard.