New article: Reparations for Harms Experienced in Residential Aged Care

Dementia Justice researchers Kate Swaffer and Linda Steele have published an article in the journal 'Health and Human Rights' which is published by Harvard University. You can read the full article here.

This paper explores the possibility of reparations for harms suffered by people in residential aged care, focusing on experiences of people with dementia. We first explain how systemic and structural harms occur within residential aged care and outline how they constitute human rights violations. Using Australia as a case study, we then consider the limitations of court-based approaches to pursuit of redress and the current absence of redress from policy responses. We then propose an expansive and multifaceted notion of redress as reparations, where governments, residential aged care operators, medical and legal professionals, and civil society engage in ongoing recognition of harms and specific actions to prevent recurrence. By drawing on the United Nations Convention on the Rights of Persons with Disabilities and the Van Boven Principles, we consider the application to aged care of the framework of access to justice and reparations for human rights violations. This framework encompasses inclusive and accessible processes to access reparations for individuals in such forms as compensation and rehabilitation, and collective reparations, including apologies and public education. In order to ensure that reparations support the prevention of further harm in aged care, the design of redress could form part of broader government strategies directed toward increasing funding and access to community-based support, care, and accommodation, and enhancing the human rights of people with dementia.

Kate and Linda would like to thank the editorial team at 'Health and Human Rights', particularly Carmel Williams.

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‘Behind Closed Doors’ – One family’s journey through the Australian Aged Care System

In March 2022, Linda Steele was invited by Dementia Reframed to launch a new book called ‘Behind Closed Doors'. In this blog post, Linda shares an abridged version of her launch speech, and situates this important book in the broader context of human rights for people with dementia.

Book review

Sarah Wallace’s book, ‘Behind Closed Doors’ offers a rich and critical account of Sarah’s journey through the health and aged care systems with her husband, Bob, following his diagnosis with Lewy Body Dementia.

In the lead up to, and four months following Bob’s diagnosis, Sarah cared for her husband in their home. She was well-positioned to do this with decades of aged care nursing experience. She had the personal drive after 50+ years of marriage, and she also had the support of her children.

Unfortunately, Sarah and Bob were not supported by the health and aged care systems to continue this arrangement at home. During a two-week stay at a dementia specific facility, Bob was medicated in a way that negatively affected the remaining 2.5 years of his life.

His time thereafter was spent moving between hospitals, mental health facilities and dementia care units where he was subjected to forced medication, chemical and physical restraint, detention, social isolation, and neglect in personal and medical care.

Sarah literally takes us behind the closed doors of the various institutions where Bob was detained, places many of us will never tread, and which are rarely featured in any depth in mainstream media. She details specific conversations and actions of staff and makes careful observations of the design and management of various settings.

Sarah’s account demonstrates how violence, abuse and neglect of people living with dementia occurs slowly over time. It gradually and insidiously unfolds in day-to-day routine care provision and the seemingly therapeutic and benevolent decisions and actions of those working in the system.

Sarah was a constant advocate for Bob throughout his time in health and aged care institutions. She sought to offer to treating doctors and staff insights into Bob’s circumstances, but she found the entire system, including individual medical professionals and staff, apathetic towards Bob and was excluded from involvement in his care. Only in Bob’s final weeks, spent at a local aged care facility (Sarah’s former workplace), was he finally treated with kindness, respect and dignity.

‘Behind Closed Doors’ not only provides a rich documentation of Bob’s experiences. We see Sarah become an activist for transformation of how health and aged care systems treat people living with dementia.

I encourage you to read Sarah Wallace’s book, ‘Behind Closed Doors’, and embrace the collective responsibility of working with Sarah and other advocates to transform our systems of care, to give everyone irrespective of age or disability, a better life. Delivering redress in the aftermath of harms such as those documented by Sarah Wallace – which we are exploring in our project – is one part of a broader strategy towards justice and transformative change.

Denial of human rights

‘Behind Closed Doors’ provides many examples of human rights violations being perpetrated in a routinised and normalised way against people living with dementia, right now across Australia.

Bob was denied the right to personal integrity (freedom from interventions in his body) and the right to liberty (freedom from being locked up). He was denied the human rights to freedom from violence and freedom from torture and other cruel, inhuman and degrading treatment.

Being subjected to chemical restraint or to detention without consent amounts to violence – specifically, it is a form of legal violence that the government, the legal system, police and judges all allow to happen by reason of someone’s disability and the assumptions this is necessary, protective, and therapeutic. Moreover, this violence can even amount to torture when done for discriminatory reasons (eg because of Bob’s dementia) or for punitive means (eg to penalise Bob for not confirming to an institution’s rules about behaviour).

Bob was denied the right to freedom of expression. Sarah interprets Bob’s emotional states and physical actions as an understandable response to his medication, the environments he was in and emotional and medical neglect by staff, interpretations which were informed by her deep and empathic knowledge of her husband. However, medical professionals and health and aged care staff generally interpreted Bob’s behaviour as only ever associated with his dementia.

Bob was denied the right to health and the right to rehabilitation, and even the right to life. Dementia is assumed by some in the health system to cast people into a state of near death where no medical care or rehabilitation is necessary. I know other examples of this happening to people living with dementia, such as my colleague, Kate Swaffer, who was told by her diagnosing doctor to go home and sort out her affairs and basically prepare to die.

It is evident from Sarah’s book that Bob was also denied the right to participate in recreation as generally, the environments in which he was detained provided no stimulus. This resonated with my earlier research with colleagues Swaffer, Phillipson and Fleming where advocates and care partners have spoken to me of people being ‘parked’ in front of televisions or walked around and around in circles in small courtyards.

Bob was also denied the right to family. From the very first day of Bob’s institutionalisation, the system worked to erode and even destroy family bonds.

Bob was denied the right to equality and non-discrimination, and he was denied the right to dignity. As Sarah describes:

‘He was robbed of his dignity. Rather than being helped to lead as full a life as possible he was treated as a thing to be controlled.’

The sum of all these human rights violations shows Bob was treated differently, unfairly, and violently, because of his dementia. Much of what happened to Bob is incomprehensible for people without disability. In particular, the chemical restraint Bob was subjected to was made possible because of his disability – we might not like how some non-disabled people behave but we can’t just go and forcibly medicate them – but this is legally possible and socially acceptable when someone has a cognitive disability.

Disability Royal Commission

A current opportunity to achieve change for people living with dementia in Australia is via the Disability Royal Commission. The Commission was established in April 2019 in response to community concern about reports of violence against, and neglect, abuse and exploitation of, people with disability.

The Commission is seeking personal experiences of:

• People with disability (including people living with dementia)

• Family and carers who support people with disability

• The wider community including health care professionals, educators, and others who provide services to people with disability.

The Commission will deliver a final report to the Australian Government in September 2023 with recommendations for improving laws, policies, structures and practices to ensure a more inclusive and just society. For more information about how to make a submission, read our recent blog post.

The significance of dementia as a disability

Dementia is a condition causing major cognitive and multiple other disabilities globally, with a significant impact on the quality of life and independence of people living with dementia. Defining dementia as a disability is important and relevant to the Dementia Redress project as we consider the rights of people with disability and the need for redress for violence, abuse and neglect. Many people are not aware that dementia is a disability, or that the World Health Organisation (WHO) has listed dementia as a disability for over a decade.

Viewing dementia as a disability is critical, in terms of human rights, including redress, under the Convention on the Rights of Persons with Disabilities (CRPD) and other conventions such as the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (and its Optional Protocol). If dementia is not considered a disability, the rights of people living with dementia are more likely to continue to be ignored.

Most people without dementia, and even some people diagnosed with dementia, do not think of dementia as a condition causing disabilities. Some people with dementia don’t want yet another negative label they need to come to terms with. Until recently, there has been little focus on the disability or the disability rights of people with dementia.

We provide ramps and elevators for people who use wheelchairs for mobility, and hearing loops for the hearing impaired, but are yet to provide universal design or other disability support such as communication access, that enable people with dementia support for their disability. Something as simple as communication access can be referred to as a cognitive ramp and needs to be commonplace; cognitive ramps are critical to equal access as those with communication and speech disabilities (e.g. Primary Progressive Aphasia) under the CRPD.

The 2019 WHO estimate of 55 million people living with dementia is an indicator of the need for change, to increase independence and quality of life of persons with dementia, including those in residential care. The Global Burden of Diseases, Injuries and Risk Factors Study “estimated that the number of people with dementia would increase from 57.4 million cases globally in 2019 to 152.8 million cases in 2050”. Whilst prevalence data may differ, there is no uncertainty we are facing a critical point in how we view and treat people living with any type of dementia, of any age. We need to ensure a higher quality of life and improved care and support than what is currently available.

Fundamental to recognising the human rights of people with dementia, in the community and in long term residential care, is equal access to the CRPD and other international human rights instruments, including OPCAT. Recognition of human rights of people living with dementia includes deinstitutionalisation and de-segregation of housing and support for people with dementia including aged care facilities and secure dementia units.

Recognition also includes monitoring of aged care facilitates and secure dementia units as ‘places of detention’ under OPCAT, until such time as they are closed. New Zealand now includes aged care facilities and secure dementia units as places of detention, and they are under the same scrutiny as jails or refugee detention centres through implementing OPCAT.

A growing number of people with dementia, including members of Dementia Alliance International (DAI) accept they are living with disabilities and are campaigning globally for their rights to equal access to the CRPD and other conventions such as OPCAT.

Dementia as a disability

In 2010, the WHO launched the updated version of the WHO Disability Assessment Schedule (WHODAS 2.0), the internal classification of functioning, disability, and health. At the same time, the WHO stated in Dementia, that ‘dementia is a condition which is the leading cause of disability and dependence in older persons globally’ (it now says a major cause).

At their 2017 mental health GAP (mhGAP) Forum, the WHO re-categorised dementia as a condition causing cognitive disabilities; it had previously been listed under psychosocial disabilities.

Dementia is now recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing cognitive and other disabilities.

The International Disability Alliance includes DAI as an Observer member, in recognition of dementia as a condition causing acquired cognitive (and other) disabilities.

People with Younger Onset Dementia (YOD) in Australia now receive services via the National Disability Insurance Scheme (NDIS), a government funded disability support agency.

Some Australian universities are starting to acknowledge and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia.

In the context of this research project, highlighting the relevance of dementia as a condition causing multiple acquired disabilities acknowledges the fundamental rights of persons living with dementia. Everyone has the right to be free from inhuman and degrading treatment, to be free from stigma and discrimination including indirect discrimination such as unfair treatment and application of blanket policies, and to respect for private life which includes autonomy over their own lives, care, and treatment.

We all have the right to participation in the community; to equal access to healthcare including rehabilitation; to respect for family life which includes maintaining family relationships and ongoing contact; and finally, the right to equal access to communities and relatedly liberty of movement.

Accepting and embedding in our work that all people with any type or cause of dementia, at any age, are also people with acquired disabilities ensures a much stronger focus for their rights under the CRPD. This is critical to the quality of life of people with dementia, to maintaining independence for longer in the community, and in residential care. It also has the potential to reduce the violence, abuse and neglect, that exits in Australia and globally in residential care facilities and ensure redress for past violations.