Is a Culture of Risk Aversion Damaging the Human Rights of People with Dementia?
Tuesday, April 20th, 2021
Enjoyment of the highest attainable standard of physical and mental health is a mandated human right.[1] However, the daily confinement of people living with dementia in care homes may challenge this mandate. A team of researchers from NSW Australia, including the well-known dementia advocate, Kate Swaffer, explored this concept further[2].
They ran interviews and focus groups with five people living with dementia, 19 care partners, 12 care home professionals and nine lawyers and advocates. Participants were asked questions about the access people with dementia living in care homes have, to the community, and recreational and social spaces within the home.
Removal of Liberties or Keeping People with Dementia safe?
One key theme identified was the restriction and neglect of residents. This incorporated references to locks on gates and doors, plus forms of physical restraint, such as placing and leaving tray tables on residents’ laps for hours, or “parking” residents in front of the television. The removal of mobility aids was also frequently mentioned. For example, replacing the resident’s walking frame with a wheelchair because the home does not have enough staff to support them for walking. Notably, the study found that few participants appeared to view these practices as problematic or unusual. Instead, participants saw these measures as keeping the person with dementia safe.
Other major themes included limited and segregated recreational activities, and concerns about duty of care and liability. Some care partners spoke positively about opportunities for friends and family to visit. However, many participants said that opportunities for community involvement were restricted to pre-determined group activities such as a bus trip. A “duty of care” was often reported to override this liberty, such as if a resident appeared too “at risk” to go out.
A Vision for the Deinstitutionalization of People with Dementia
The authors concluded the paper with four recommendations. Firstly, that human rights scholars and practitioners become versed in the restrictions that occur in the daily provision of care with people living with dementia; and second, that they promote community access, physical mobility, and social and recreational inclusion within care homes. Third, that current interpretations and misappropriations of a duty of care be challenged, and a “duty of care” reformed to incorporate freedom of movement. Lastly, the authors call for a broader, longer-term goal that looks at the deinstitutionalisation and transformation of the ways in which housing and support to people living with dementia is provided in our society.
Study Limitations
The sample was somewhat underrepresented by people with dementia. Moreover, participant selection for the research study was based on people who put their hand up. In this way, findings could have been biased; for example, by people with a particular viewpoint who were invested to take part.
[1] https://www.ohchr.org/en/issues/health/pages/srrighthealthindex.aspx
