Missing voices

People with dementia experience marginalisation of voice in society, health care, legal and civic participation - and reflected in lack of inclusion in research, policy and reform. Yet the voices of people with dementia was unexpectedly absent from the Royal Commission into Aged Care Quality and Safety (Royal Commission) Final Report, notwithstanding the Royal Commission was explicitly tasked with inquiring into dementia aged care. The Royal Commission itself promoted inclusive approaches when it stated:

In overhauling the aged care system, the voices of people receiving care must be heard to ensure that the system is relevant and appropriate for the people it is intended to support.

However, despite the majority of residents in residential aged care having a diagnosis of dementia, the Royal Commission Final Report included only direct quotes from only three individuals identified as living with dementia, none of whom had lived experience of residential aged care. Despite acknowledging that people with dementia face practical and legal barriers to participation in civic and legal processes, the Royal Commission failed to adjust its methods to ensure their voices were ‘heard’. At the same time, perspectives and experiences of people with dementia were substituted with voices of experts, advocates, family and care partners. Residents with dementia in residential aged care settings experienced a procedural denial of voice and narrative agency, even in the formal public inquiry going to the very conditions of their lives.

The absence of voices of people with dementia in the Final Report repeated and reinscribed framing of people with dementia as ‘missing persons’, and raised concerns for the legitimacy and success of the Royal Commission’s recommendations for dementia aged care reform.

Post-Royal Commission, people with dementia continue to be pushed to the ‘margins’ of civic participation and reform in matters that directly affect them. This unaddressed exclusion contributes to unresponsive aged care systems and supports a radical shift toward innovative approaches to ensure all resident voices are heard.

References:

Kristina Chelberg and Kate Swaffer, ‘Missing Persons: Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care’ (2023) 30(3) Journal of Law and Medicine 761.

Royal Commission into Aged Care Quality and Safety (Final Report – Volume 1: Summary and Recommendations March 2021) 75 <https://agedcare.royalcommission.gov.au/sites/default/files/2021-03/final-report-executive-summary.pdf>