Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care.
This article was published on 25 Jun 2020, in the Australian Journal of Human Rights, by Linda Steele , Kate Swaffer , Ray Carr, Lyn Phillipson & Richard Fleming.
Abstract: Human rights are increasingly being considered in Australian law reform and policy discussions on how to improve the circumstances of people living with dementia in care homes. This article enriches understanding of the views on human rights held by people living with dementia and those who support, advocate and care for them, in order to ensure that law and policy reforms that promote human rights can be meaningfully enjoyed in practice. Drawing on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates, this article argues that there is general support among stakeholders for human rights. However, this support was qualified by their acknowledgement of entrenched economic, cultural and sociolegal barriers to the recognition of human rights in the everyday lives of people living with dementia. The article concludes that urgent action is required to transform the cultural, economic and social drivers of ambivalence and resistance to dementia and human rights within aged care and the broader community.
It is the third article (3 of 3) from a research project, ‘Safe and Just Futures of People Living with Dementia in Residential Aged Care’ which I have been involved in as an Associate Investigator at the University Technology Sydney (UTS). Apparently, this project was inspired by my advocacy about rights (in particular of people living in locked and segregated facilities or units), but it has been brilliantly lead by my colleague and friend, Dr Linda Steele.
We first met at the University of Wollongong, when I was involved in another project with Lyn Phillipson and Richard Fleming, and others. One of the outcomes of that project was this journal article, Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice.
Whilst I am truly delighted with the outcomes of this particular research project, and even more so with our incredible collaboration, I remain more than frustrated that very little has changed in the 12 years I have been campaigning for the realisation of both human and legal rights for all people with dementia, and for people to be provided with more post dx advise than to go home and get their end of life affairs in order, and also for dementia to be managed as a condition causing disability.