Who knows? Upholding epistemic rights of people with dementia as they move into a residential aged care facility

The United Nations (2008) Convention on the Rights of Persons with Disabilities states that people with disabilities have epistemic, or knowledge-related, rights to “seek, receive and impart information and ideas on an equal basis with others” (p. 4). Yet, people with dementia often have their epistemic rights challenged, hindering their involvement in care decision-making.

In this thesis, I draw on Fricker’s (2007) ‘epistemic injustice’ theory to explain how social power dynamics influence involvement of marginalised people in social knowledge production and interpretation. I first presented a published systematic review regarding experiences of people with dementia who move from ‘home’ to a residential aged care facility (RACF). The review revealed such moves as critical moments where issues of decision-making inclusion and exclusion became especially visible. A theory-oriented publication follows, demonstrating the appropriateness of epistemic injustice theory for exploring social power dynamics around knowledge production and interpretation by people with dementia.

Congruent with the conceptual framing, I used narrative inquiry methodology to explore how families experience and negotiate moves to RACFs, concentrating on experiences of inclusion and exclusion of people with dementia from decision-making. I interviewed five family groups (three from Australia and two from Canada), comprising people with dementia who recently moved to an RACF and up to two family members.

Findings showed that people with dementia: had their current care preferences undermined by their pre-dementia preferences, often were actively excluded from discussions about moving to an RACF, moved to RACFs selected according to availability rather than best fit or preference, experienced obstructed access to accurate information about the nature of their moves, and were required to adapt their relationships to the physical and social constraints of RACF environments.