Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes

Abstract

This article explores how care homes—and, specifically, their common features such as dementia care units and locked doors and gates—impact on the human rights of people living with dementia. We suggest that congregation, separation and confinement of people living with dementia by the care home built environment constitute ‘segregation’. In the specific context of residential aged care facilities in Australia, we draw on the United Nations Convention on the Rights of Persons with Disabilities (‘CRPD’) to frame this segregation as an injustice. We focus on the rights to non-discrimination (Article 5), liberty and security of the person (Article 14), equality before the law (Article 12), accessibility (Article 9), and independent living and community inclusion (Article 19). Our analysis shows that addressing segregation must involve structural and resource reforms that are transformative in bringing about new ways of living and relating to each other. Such reforms are directed towards providing meaningful alternatives and appropriate supports to make choices from a range of alternative residency and support options, and building communities that are free from ableism, ageism and other systems of oppression that contribute to confinement and segregation.

Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma

“…Cultural stigma is society’s shared negative beliefs, prejudices and discriminatory structures [ 5 ]. Examples of dementia cultural stigma include public fear of dementia [ 6 , 7 ], therapeutic nihilism [ 8 ] and locked dementia care units [ 9 ]. Dementia stigma contributes to delayed help-seeking [ 6 , 7 ], a reluctance by health professionals to give a dementia diagnosis [ 10 ] and human rights violations of people with dementia [ 9 ].…”

“…Examples of dementia cultural stigma include public fear of dementia [ 6 , 7 ], therapeutic nihilism [ 8 ] and locked dementia care units [ 9 ]. Dementia stigma contributes to delayed help-seeking [ 6 , 7 ], a reluctance by health professionals to give a dementia diagnosis [ 10 ] and human rights violations of people with dementia [ 9 ]. Dementia stigma means that people with dementia frequently feel denied and ignored and experience discrimination in healthcare [ 1 ], perceived stigma by people with dementia is associated with depression, anxiety and lower self-esteem, personal control and activity participation [ 11 ] and with depression in care partners [ 12 ].…”

Dementia in Media Coverage: A Comparative Analysis of Two Online Newspapers across Time

“…It can thus be further suggested that both newspapers are more likely to report on the care need or caregiving burden of dementia, which in turn impacts on the dementia-related social stigma [ 56 ]. Consequently, help-seeking behavior may be delayed, healthcare professionals may be reluctant to give a dementia diagnosis, and the overall human rights of people with dementia may be violated [ 69 , 70 ].…”

Human rights and care homes for older people: a typology of approaches from academic literature as a starting point for activist scholarship in human rights and institutional care

“…However, under international human rights law, every human being, including people living in care homes, are rightsholders and the perspectives on the role for human rights in care homes can be useful to discuss ramifications, practical and practice issues, and policy directions. 35 This section now briefly outlines England's legal and regulatory human rights framework for care homes.…”