Gender underexamined in dementia care policy
This research finding comes despite women having a higher prevalence of dementia and more likely to be caring for someone with dementia.
Dementia disproportionately affects women but this fact was ignored in the aged care royal commission’s final report, according to an analysis from Australian health law researchers published in the Journal of Ageing Studies.
The study – Hidden in plain sight: Women and gendered dementia dynamics in the Australian Aged Care Royal Commission – was undertaken by Dr KristinaChelberg from Qeensland University of Technology’s Australian Centre for Health Law Research and Dr Linda Steele from the University of Technology Sydney.
Whether someone is living with dementia or supporting someone living with dementia in aged care, the gendered experiences of women with dementia and the unpaid work of women care partners of people with dementia in aged care were overlooked by the Royal Commission Commission into Aged Care Quality and Safety, the authors found.
Dr Chelberg said 63 per cent of people with dementia are women and 75 per cent of care partners of people with dementia are women.
The findings show gender is underexamined in dementia aged care policy despite statistics highlighting that women have a higher prevalence of dementia and are also more likely to be a care partner for a person living with dementia, she said.
“We think there has been a missed opportunity for an intersectional understanding of experiences of dementia in aged care that accounts for gender, as well as disability, economic, and socio-cultural backgrounds, Ms Chelberg told Australian Ageing Agenda.
“For example, we found women living with dementia had their pre-diagnosis identity overlooked and were expected to behave as sweet old ladies. Likewise, there has been minimal engagement with gendered aspects of sexual violence and assault in aged care.”
Dr Chelberg said that their findings suggest the aged care system tends to de-gender people living with dementia.
“We ask providers to pay attention to how dementia may be experienced by women and people of other non-binary genders and listen when they express those experiences,” she said.
“The new Act also states care partners are to be considered ‘partners with registered providers’ – and this must extend to respecting and acting on complaints made by women care partners if they express concerns about care of a resident living with dementia.”
During their analysis of the final report, Dr Chelberg also explained to AAA that women in aged care were not only devalued but were also represented as tiresome and troublesome, either for complaining or for their dementia-related behaviour, and thus undeserving of justice.
According to care partners’ cases noted the final report’s extracts, staff had spoken derogatorily about female care partners who had complained, the care partners spoke of feeling bullied and intimidated by management and were labelled as angry and difficult.
“Daughters experienced intimidation, exclusion, exhaustion, grief, and felt they were failing their parent, at the same time as their complaint labour took them away from precious time with their loved one,” Dr Chelberg said.
“The royal commission neither included the voices of women with dementia, nor recognised the labour of women care partners, and thus reinforced, rather than challenged, the marginalised status of women in the aged care system.”
Dr Linda Steele told AAA the new Act was recommended and informed by the royal commission and shows limited engagement with how gendered dynamics of dementia and caring impact aged care systems.
“We would have liked to see the Act show more nuance in relation to diverse experiences of dementia, together with greater recognition of unpaid care labour performed by women that is expected to fill the gaps in substandard aged care,” Dr Steele said.
“Women care partners continue to perform a lot of complaint labour because systems are not working well or are harmful.”
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