‘MISSING PERSONS’: ABSENT VOICES OF PEOPLE WITH DEMENTIA IN THE AUSTRALIAN AGED CARE ROYAL COMMISSION
Kristina Chelberg1, Kate Swaffer2, Queensland University Of Technology Brisbane2, Adelaide SA 1Queensland University Of Technology, Brisbane, QLD, Australia2University of South Australia, Adelaide, SA , Australia
Abstract
This paper argues the voice of people with dementia was missing from the Australian Royal Commission into Aged Care Quality and Safety (RCAC) Final Report. This failure to ‘hear’ people with dementia was notwithstanding that the RCAC was explicitly tasked to inquire into dementia care. Drawing on marginalised voice literature, this argument develops from discourse analysis of the RCAC Final Report. This analysis focused on the represented voice of people with dementia to reveal this voice was articulated and modulated by substitute voices of experts, advocates, family, and care partners. Responding to this absence, this paper offers voice for people with dementia through its second author, Kate Swaffer, who was a witness to the RCAC, and researcher, who lives with a diagnosis of a rare young onset dementia. This critique shows the Final Report marginalised the perspective and experience of people with dementia in the aged care system, at the same time as prioritising substitute voices. This absence of voice repeats and re-inscribes framing of people with dementia as ‘missing persons’. Where people with dementia face practical and legal barriers to participate in civic and legal processes, the RCAC failed to adjust its methodologies to ensure their voices were ‘heard’. The RCAC’s re-inscription of marginalisation of people with dementia raises concerns for the legitimacy and success of its recommendations for dementia aged care reform in the aftermath of the RCAC.
Biography
Bio to come