Human Rights and the Confinement of People Living with Dementia in Care Homes

• Published in: Health and human rights Vol. 22; no. 1; pp. 7 - 20
• Main Authors: STEELE, LINDA, CARR, RAY, SWAFFER, KATE, PHILLIPSON, LYN, FLEMING, RICHARD
• Format: Journal Article
• Language: English
• Published: United States President and Fellows of Harvard College 01.06.2020; Harvard School of Public Health; Harvard University Press; Harvard FXB Center for Health and Human Rights
• Subjects: Anxiety; Attitude of Health Personnel; Australia; Breaches; Caregivers; Dementia; Dementia - psychology; Duty of care; Focus Groups; Freedom of movement; Health Personnel - psychology; Human Rights; Human rights violations; Humans; Interviews as Topic; Lawyers; Liability; MENTAL HEALTH AND HUMAN RIGHTS; Multiculturalism & pluralism; Quality of Health Care - standards; Residential care; Residents; Social dynamics; Subversion; Australia
• ISSN: 1079-0969; 2150-4113; 2150-4113

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.