New Report Aims Awareness On Risk To People Living With Dementia

People living with dementia in Australia have been subject to significant harm including violence, abuse and neglect in aged care. A new report finds that government, the justice system, health care and aged care providers are failing to recognise, redress and repair this harm, or hold those responsible to account.

The report, Reparations for harm to people living with dementia in residential aged care, aims to bring awareness to the need for reparations, as well as changes to policy and practice around access to justice, and immediate improvements in the way those with dementia are treated in residential care coupled with longer term action on enhancing community-based supports towards deinstitutionalisation of aged care.

There are currently more than 480,000 people living with dementia in Australia, and many more people are likely to require support in the years ahead. Ensuring access to justice will ultimately improve support and care for all Australians with dementia.

Report authors, Associate Professor of Law Linda Steele, from the University of Technology Sydney, and dementia and disability campaigner and independent researcher Kate Swaffer, argue that access to reparations is a human right that is already available to other groups who have been harmed in institutional settings.

“One of the main outcomes of the Royal Commission into Institutional Responses to Child Sexual Abuse was a national Redress Scheme that provided compensation, apologies, counselling and other support to survivors,” said Associate Professor Steele. “But, we have not seen similar action in response to widespread harm in residential aged care.”

The Royal Commission into Aged Care Quality and Safety is just the latest of numerous inquiries over the last two decades to draw attention to significant and ongoing harms experienced by people living with dementia in aged care.

These include people with dementia being subjected to physical and sexual assault, neglect and the use of restrictive practices such as chemical and physical restraints while living in these facilities. Kate Swaffer said the solution to these harms has been largely framed around improving quality in aged care facilities; staffing, resources or funding.

“What is missing is that this is a systemic problem that has impacted so many people living with dementia and their families and care partners. Nothing is being done to reckon with or redress those who have experienced harm.

“To remain silent on this issue, despite two decades of formal enquiries, and a Royal Commission into aged care proving violence, abuse and neglect, including the known 50 sexual assaults per week in residential care in Australia, is abhorrent and highlights the depth of ageism and ableism in Australia,” she said.

The study found that people living with dementia in aged care, as well as care partners and family members, encounter ineffective complaint and prosecutorial processes, including barriers to reporting harm to the police, and difficulty accessing justice through the courts.

The researchers developed a set of principles to guide the design and operation of reparations for people with dementia, and these principles were informed by empirical research with people living with dementia, care partners, advocates and lawyers.

“Access to reparations is an important component to how we move forward and improve the system in the future, because we need to learn from the past to be able to stop that harm from continuing to occur,” said Associate Professor Steele.

The study was funded by Dementia Australia Research Foundation, together with project organisational partners Dementia Alliance International and People with Disability Australia.