Journal article by Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming, published 18 June 2020 in Health and Human Rights
Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilization and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organizational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine, and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.
This article is one of three, as part of a research project I was involved in with the authors listed above. The project ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ aimed to explore:
- current barriers to liberty and community access for people living with dementia in RACFs; and
- the possibilities and challenges of utilising a human rights framework to transform the living and support arrangements of people living with dementia in RACFs.
Our first paper, Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes, was published last year, and the anthology and project report was published earlier this year, also available to download here.