Dementia Justice: Dementia Redress Project

Exploring the need for redress and reparations in response to violence, abuse and neglect of 
people living with dementia in residential aged care in Australia.

This project was led by Chief Investigator and colleague, Professor Linda Steele from the University of Technology Sydney, me, as an Associate Investigator, and our Research Assistance Evelyn Rose. The funding for the website we’re currently using has run out out, and as we wish to keep an easily accessible record of this work, Linda and I have agreed for me to host it as a new page here.

Image credit: Devon Bunce, Digital Storytellers.  This image was created at the Summit on Human Rights for People with Dementia Living in Residential Aged Care in 2019.

About the Dementia Redress Project

The Dementia Redress Project explored the need for redress of violence, abuse and neglect of people living with dementia in residential aged care in Australia. The project was completed in 2023.

Violence, neglect and abuse of people living with dementia is a systemic problem in residential aged care. It inflicts significant harm on victims/survivors. Violence, neglect and abuse also impacts care partners, families and friends and the broader dementia community. Those affected have been unable to access justice, or healing and closure through complaints mechanisms and the courts. 

While ending violence, neglect and abuse requires reform of legal, regulatory, and funding frameworks, these reforms do not ‘redress’ in the sense of setting right or fixing the wrongs of past violence, neglect and abuse. There are also redress practices beyond individual court action. These practices include compensation and psychosocial support schemes, memorials, national apologies, and community education. These redress practices create individual and community benefit by delivering financial, legal and community recognition of experiences through appropriate exposure and analysis of past wrongdoing. This broader approach to redress was used in Australia in response to violence, abuse and neglect in other institutional contexts, such as in the context of child welfare.

Founded on the perspectives and lived experiences of the dementia community, the Dementia Redress Project explores the need to redress violence, neglect and abuse of people living with dementia in residential aged care. With funding support from the Dementia Australia Research Foundation and in collaboration with Dementia Alliance International and People with Disability Australia, the project team explored redress through interviews and focus groups with people living with dementia, care partners, families and close friends, and lawyers and advocates.  

The project investigated the following research questions:

  1. Does the dementia community think redress is necessary, and why?
  2. What does the dementia community understand by the concept of ‘redress’, (i.e. what does it mean to ‘set right’ the wrongs of neglect and abuse, what should be the objectives or end results of redress)?
  3. What specific modes of redress do the dementia community want in a redress scheme, and what principles should guide such a scheme?
  4. How can the legal profession best work with the dementia community in a redress scheme?

Project findings and recommendations were shared with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the dementia community, government, aged care sector, dementia, disability and older persons’ advocacy organisations, and professional associations. Project findings and recommendations have also been published in Health and Human Rights, Dementia, and Scandinavian Journal of Disability Research.

Blogs

Note: I’ve copied over most of the blogs from our previous website hosting this information, excluding opportunities to get involved as the funding and overall project has been completed.

New dementia reparations research published!

By Linda Steele, first published on July 20, 2024

Check out our new open access article in Scandinavian Journal of Disability Research! Our article explains why reparations for people living with dementia are necessary.

The article is based on the perspectives of people living with dementia, care partners and family members, and advocates and lawyers.

Thank you to everyone who contributed their wisdom, experiences, and time to our project.

More information on the article: People living with dementia (‘PLWD’) have experienced significant human rights violations in long term care (‘LTC’) institutions, including institutionalisation, segregation, detention, violence, and neglect. Wide ranging and ongoing impacts of these violations on PLWD have not been redressed. This article argues for reparations for PLWD who experience harm in LTC institutions. Building on international human rights norms on access to justice and reparations for human rights violations, the article presents empirical findings from a research project on perspectives on reparations of PLWD and their support networks. The article discusses justifications for reparations given by people living with dementia and their support networks. The article reports on six key reasons why reparations are necessary: recognise harm, validate people’s experiences of harm, recognition of equality and humanity of PLWD, equal access to justice, systems transformation, and accountability. The article presents implications of these empirical findings for disability human rights scholars and practitioners.

New dementia reparations research published!, 20 July 2024

Check out our new open access article in Scandinavian Journal of Disability Research! 

Our article explains why reparations for people living with dementia are necessary. 

The article is based on the perspectives of people living with dementia, care partners and family members, and advocates and lawyers. Thank you to everyone who contributed their wisdom, experiences, and time to our project.

More information on the article: People living with dementia (‘PLWD’) have experienced significant human rights violations in long term care (‘LTC’) institutions, including institutionalisation, segregation, detention, violence, and neglect. Wide ranging and ongoing impacts of these violations on PLWD have not been redressed. This article argues for reparations for PLWD who experience harm in LTC institutions. Building on international human rights norms on access to justice and reparations for human rights violations, the article presents empirical findings from a research project on perspectives on reparations of PLWD and their support networks. The article discusses justifications for reparations given by people living with dementia and their support networks. The article reports on six key reasons why reparations are necessary: recognise harm, validate people’s experiences of harm, recognition of equality and humanity of PLWD, equal access to justice, systems transformation, and accountability. The article presents implications of these empirical findings for disability human rights scholars and practitioners.

Launches, Publications, and Advocacy: A Busy Time for the Dementia Redress Project!, 10 August 2023

It has been a while since we posted to our blog, and you might be wondering … what have we been up to?!

This post outlines progress we are making to share our reparations research with the world and contribute to change. Click on the red text below to access our resources.

In early 2023 we published the ‘Dementia Reparations Principles’. You can read the Principles and accompanying documents via these links:

In March 2023 we launched the ‘Dementia Reparations Principles’ at two online events. You can watch or listen to the launches via these links:

Since 2022 we have published journal articles about our project:

We have been sharing the ‘Dementia Reparations Principles’ and accompanying documents with politicians, government agencies, public inquiries and policymakers in Australia and overseas to advocate for introduction of reparations for harm experienced by people living with dementia in residential aged care and reform of existing justice and redress mechanisms that apply to people living with dementia in residential aged care and other contexts:

  • We have submitted the ‘Dementia Reparations Principles’ and accompanying documents to government inquiries, including: Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, New Zealand Abuse in Care Royal Commission of Inquiry, Australian Joint Standing Committee on Implementation of the National Redress Scheme Inquiry into Operation of the National Redress Scheme
  • We have submitted the ‘Dementia Reparations Principles’ and accompanying documents to government policy development on dementia and aged care, including: Australian Department of Health and Aged Care’s National Dementia Action Plan, Australian Department of Health and Aged Care’s Aged Care Legislative Reform
  • We have reached out to all Australian Federal, State and Territory Ministers for health, aged care, and seniors, and have started meeting with staff from some Ministers’ offices
  • We will be meeting with the Australian aged care industry body Aged & Community Care Providers Association Ltd
  • We have presented to the Australian government members of the Optional Protocol on the Convention Against Torture National Preventive Mechanism

We encourage you to share the project resources and information with your networks in government, advocacy, aged care industry and the wider community! 

We are available to meet online with interested individuals and groups to present on our research and discuss how we can work together to advance this issue. We are also keen to receive any of your suggestions of who we should contact to share the ‘Dementia Reparations Principles’ – in Australia or anywhere else in the world. Please email: linda.steele@uts.edu.au.

Launch of Dementia Reparations Principles, 22 February 2023

You are invited to come along to our online launches of the Dementia Reparations Principles and project report.

Australian focused launch, 13 March 2023 (AEST timezone)

Linda Steele and Kate Swaffer in conversation with: Yumi Lee (Older Women’s Network of NSW), Bill Mitchell OAM LLD (Townsville Community Law), Theresa Flavin (dementia human rights activist and advocate)

International human rights focused launch, 23 March 2023 (CET timezone)

Linda Steele and Kate Swaffer in conversation with: Professor Claudia Mahler (United Nations Independent Expert on the Enjoyment of all Human Rights by Older Person), Professor Israel Issi Doron (University of Haifa), Bethany Brown (International Disability Alliance)

Access the report and principles

If you cannot attend this event but would like to read our report and the Dementia Reparations Principles, you can register to access them (they will be publicly available on 13 March 2023): https://www.dementiajustice.org/get-involved

About the Dementia Reparations Principles

People living with dementia have been subject to significant harm including violence, abuse and neglect in aged care. Yet, this harm is rarely recognised and redressed. 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 systems that allow harm to occur remain unchanged and continue to perpetrate further harm. People living with dementia and their care partners and family members await accountability, justice and change.

During 2021 and 2022, we (Linda Steele and Kate Swaffer) explored how to redress the harm experienced by people living with dementia in residential aged care. We heard from people living with dementia, care partners and family, advocates and lawyers. We also considered what international human rights say about the need and design of redress. And, we looked at the design and lived experiences of other Australian redress schemes such as the National Redress Scheme for survivors of institutional child sexual abuse.

We developed a set of principles to guide the design and operation of reparations for people with dementia. These principles were informed by our empirical research with people living with dementia, care partners and family, advocates and lawyers. They were also informed by international human rights law and the design and lived experiences of other Australian redress schemes. We workshopped a draft of the principles with people living with dementia, care partners and family, advocates and lawyers.

Our new report called Reparations for harm to people living with dementia in residential aged care provides an evidence-base for the Dementia Reparations Principles. The report finds that government, the justice system, health care and aged care providers are failing to recognise, redress and repair this harm, and hold those responsible to account. The report also finds that people living with dementia, and their care partners and family, want reparations that will bring about recognition, accountability and change, now. 

Image description: An older woman is standing outside, smiling and looking into distance. 

Reparations a vital dimension of deinstitutionalisation: NEW United Nations Guidelines, 5 October 2022

Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides people with disability the right to independent living and community inclusion. This means people with disability should be able to live where they choose and with whom they choose. Providing access to accommodation in the form of largescale residential institutions, however, is inconsistent with this right, and governments now have an obligation to plan for deinstitutionalisation.

This blog highlights the new Guidelines on deinstitutionalization, including in emergencies, adopted by the United Nations CRPD in September 2022. We explain the important connection between reparations and deinstitutionalisation, and how the Dementia Justice Project is providing an evidence-base to support realisation of Article 19.

Dementia as a disability

Dementia Australia estimates 487,500 people are currently living with dementia in Australia, and this will increase to 1,076,000 people by 2058. The Alzheimer’s Disease International 2021 World Alzheimer’s Reportestimated 42 million people living with dementia do not have a formal diagnosis. In Australia, Dyer et al (2018) found many people with likely mild cognitive impairment or some form of dementia living in residential settings also lack a formal diagnosis. 

The World Health Organisation confirms dementia is a major cause of disability and dependence globally, hence people living with dementia should enjoy the same rights under the Convention on the Rights of Persons (CRPD). People living with dementia should also have equal rights under other human rights conventions and treaties such as the International Covenant on Civil and Political Rights and the Convention Against Torture (OPCAT).

Abuse in institutional settings

Institutional settings such as large residential care facilities, are under more scrutiny than ever before. The COVID pandemic highlighted long-term problems of poor care, violence, abuse and neglect in large residential care facilities. Examples include low levels of meaningful, relationship-centred activities, poor quality food, lack of opportunities for exercise or outings into the community, and low visitor numbers. 

There has been concern for decades that people living with dementia are at particular risk of elder abuse (including mistreatment, violence, including high levels of sexual assault against women with dementia, abuse, and neglect) in institutional (large residential care and hospital) settings, however there was little data to confirm such fears. Despite 20 years of taxpayer-funded, formal enquiries into aged care systems in Australia, reports of abuse have continued. In 2017, whistle-blowers highlighted violence occurring in the Oakden facility in South Australia, including use of restrictive practices. This was followed by the Royal Commission into Aged Care Quality and Safety from 2018 to 2019.

The Royal Commission comprised 23 public hearings over 99 days, 641 witnesses, and over 10,000 public submissions. The Royal Commission resulted in the final report with 148 recommendations, but surprisingly, and disturbingly, not one recommendation addressed the issue of redress or reparations for past harms to people living in residential or community care, or deinstitutionalisation.

The violence, abuse, and neglect of people living with dementia in large residential care facilities (and the community) is unacceptable. Finding solutions is challenging but essential. The institutional nature of care is a significant reason for violence, abuse, and neglect in residential care settings. This has occurred for other institutionalised populations such as children living in orphanages and people with disabilities in institutions. Research into the harms done to people living in residential aged care facilities has also increased over the last decade, demonstrating this not only a problem in Australia, but also in other countries including the United States, Canada and the United Kingdom. 

Ultimately, when violence is inherent to institutional residential care, a core part of the solution to ending violence is to provide access to alternative accommodation and supports and disband institutions.

UN CRPD Guidelines on Deinstitutionalisation

Article 19 of the CRPD provides that people with disabilities have the right to independent living and community participation. In the 2017 General Comment on Article 19, the CRPD Committee explained that ‘independent living’ is about choice and control over one’s residence and life:

“individuals with disabilities are provided with all necessary means to enable them to exercise choice and control over their lives and make all decisions concerning their lives. Personal autonomy and self-determination are fundamental to independent living, including access to transport, information, communication and personal assistance, place of residence, daily routine, habits, decent employment, personal relationships, clothing, nutrition, hygiene and health care, religious activities, cultural activities and sexual and reproductive rights… 

Independent living is an essential part of the individual’s autonomy and freedom and does not necessarily mean living alone. It should also not be interpreted solely as the ability to carry out daily activities by oneself. Rather, it should be regarded as the freedom to choose and control, in line with the respect for inherent dignity and individual autonomy…”

The Committee states that governments have the obligation to “adopt a strategy and a concrete plan of action for deinstitutionalization”. This should include “the duty to implement structural reforms, to improve accessibility for persons with disabilities within the community and to raise awareness among all persons in society about inclusion of persons with disabilities within the community”. Moreover, deinstitutionalisation:

“requires a systemic transformation, which includes the closure of institutions and the elimination of institutionalizing regulations as part of a comprehensive strategy, along with the establishment of a range of individualized support services, including individualized plans for transition with budgets and timeframes as well as inclusive support services.”

In September 2022, the Committee published Guidelines on deinstitutionalization, including in emergencies in order to complement the 2017 General Comment on Article 19. The Guidelines can help governments in realising Article 19. They also provide a basis for planning deinstitutionalisation processes, and prevention of future institutionalisation. 

The Guidelines explain that institutionalisation of persons with disabilities refers to

“any detention based on disability alone or in conjunction with other grounds such as ‘care’ or ‘treatment’”.

Such institutions include those relevant to people living with dementia, notably nursing homes, secure dementia wards, psychiatric institutions, and long-stay hospitals. 

The Guidelines describe how governments have failed to deinstitutionalise and that institutions continue to be harmful to people with disability:

“Despite obligations under international law, persons with disabilities worldwide continue to be placed in institutions under life-threatening conditions.”

The Committee observes that deinstitutionalization processes are either not compliant with the Convention or are overdue. 

“Institutionalization is a discriminatory practice against persons with disabilities, contrary to article 5 of the Convention. It involves de facto denial of the legal capacity of persons with disabilities, in breach of article 12. It constitutes detention and deprivation of liberty based on impairment, contrary to article 14. 

States parties should recognise institutionalization as a form of violence against persons with disabilities. It exposes persons with disabilities to forced medical intervention with psychotropic medications, such as sedatives, mood stabilizers, electro-convulsive treatment, and conversion therapy, infringing articles 15, 16 and 17. It exposes persons with disabilities to the administration of drugs and other interventions without their free, prior and informed consent, in violation of articles 15 and 25.”

The Guidelines emphasise the importance of people with disabilities, including people who have been affected by institutionalisation, leading deinstitutionalisation processes. As such processes of deinstitutionalisation should not be led by those involved in managing or perpetuating institutions. 

The Guidelines continue the CRPD Committee’s progressive approach to deinstitutionalisation, which is in contrast with other parts of the United Nations. For example, the WHO and OHCHR recent Call for inputs to the Draft guidance on ‘Mental Health, Human Rights, and Legislation’ seeks an end to all forms of coercion, but still maintains a health-service dominated approach. This falls short of recognising the inherent harmfulness of institutions and the need for deinstitutionalisation.

The role of reparations in deinstitutionalisation

The Guidelines identify a specific role for reparations in deinstitutionalisation, stating that governments should ensure legal and policy frameworks:

“enable the full inclusion of all persons with disabilities and guide deinstitutionalization processes towards the closure of institutions. Such frameworks should enable the development of inclusive community support systems and mainstream services, the creation of a reparations mechanism, and guarantee the availability, accessibility and effectiveness of remedies for survivors of institutionalization.”

In Part IX (remedies, reparations and redress) the Guidelines state that governments:

“should provide individualized, accessible, effective, prompt and participatory pathways to access to justice for persons with disabilities who wish to seek redress, reparations and restorative justice, and other forms of accountability.” 

The Guidelines provide that reparations for institutionalisation should include formal apologies, financial compensation, include restitution, habilitation and rehabilitation, and establishment of truth commissions.

What does this mean for Australia?

As a signatory to the CRPD, the Australian Government must meet its obligations under Article 19, including developing a plan and strategy for deinstitutionalisation which extends to residential aged care facilities and secure dementia care units. As part of this, the Australian Government must develop a legal framework for reparations which involves the multiple forms identified in the guidelines, and this reparations framework must be available to people living with dementia in residential aged care. 

Dementia Justice Project

Our project is the first international research known to advance a human rights case for reparations for people living with dementia and to empirically study reparations for people living with dementia in aged care. We’re finding that people living with dementia and their family members and care partners agree on the necessity of reparations. This is particularly in light of the ongoing and longer-term impacts of harm, and the failures of Government and aged care providers for decades.

The project provides an evidence-base for what people living with dementia and their family members and care partners want as the types and processes of reparations. As such, the project provides an important source of information for the Australian Government on how reparations could be constructed and delivered. The research also provides insights for other nations grappling with how to respond to, and repair, the harms of institutionalisation for people living with dementia and other people with disability experiencing institutionalisation.

New article: Reparations for Harms Experienced in Residential Aged Care, 30 June 2022

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.

‘Behind Closed Doors’ – One family’s journey through the Australian Aged Care System, 18 May 2022

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, 11 March 2022

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 accesscan 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. 

Our project featured in Australian Ageing Agenda, 28 February 2022

Dr Linda Steele and Kate Swaffer were recently interviewed about their research on redress for an article in Australian Ageing Agenda. You can read Christopher Kelly’s full article below. You can read more articles by Christopher Kelly on the Australian Ageing Agenda website.

‘No redress for elder abuse’, by Christopher Kelly for Australian Ageing Agenda

16 February 2022 

Almost a year on from the release of the aged care royal commission’s final report and little has been done to tackle systemic elder abuse in Australia’s residential facilities. 

The report was damning, calling the level of neglect and abuse in aged care “unacceptably high”.

It estimates that 40 per cent of aged care residents experience neglect, emotional abuse, or physical abuse.

And that almost 50 sexual assaults occur in residential aged care per week. 
“Why aren’t people up in arms about that?” Kate Swaffer asked Australian Ageing Agenda. “If you had a child at school that was sexually abused, you would expect hat to be taken seriously … that’s not happening in aged care.”

Ms Swaffer – a global campaigner for the rights of people with dementia and older people in care – was one of many speakers appearing at the National Elder Abuse Conference in Tasmania earlier this week. Presenting as part of a panel discussing elder abuse in aged care, Ms Swaffer told AAA that sexual assaults in residential facilities remains “a significant issue that our governments and the sector are seeming to ignore.”

What Ms Swaffer would like to see is some form of redress. “Redress meaning righting the wrongs,” she said. “Kevin Rudd said sorry to the Aboriginal people in Australia for past abuse. We have redress in relation to institutional child sexual abuse. And yet there is no redress for abuse of people living in residential aged care.”

Fellow panellist Linda Steele is an Associate Professor at UTS Law Faculty. She has been researching disability law and social issues for over a decade. Ms Steele told AAA that her research shows that people with dementia are exposed to particular forms of institutional abuse. “In [dementia-specific] units they can be subject to lower standards of social engagement and inclusion than other residents in aged care facilities,” she said. 

“Additionally, people living with dementia – by reason of their cognitive impairment – can then be subject to the use of restrictive practices, which is a form of elder abuse.” Restrictive practices such as restraining residents in chairs, in their beds, or in locked rooms. “Or it could also be the use of chemical restraints, such as sedation,” said Ms Steele.

Segregation is something else that needs to be addressed. “We need to have a bigger conversation about institutionalisation because a lot of the abuse and violence that happens in aged care settings is inherent to that particular way of living,” said Ms Steele.

Ms Steele supports a human rights-based Act for older people, as recommended by the royal commission. “A human rights approach is a way to ensure that people who are living in aged care are protected from violence,” she said. “But broader than that it actually demands that people in aged care be treated equally to other people and that ultimately they have the right to live within the community.”

As Ms Swaffer pointed out, the only other cohort of people segregated in Australia are “convicted criminals”. “Older people don’t have the same rights as anyone else in the country,” she said. “As a society we need to find better ways to care for people requiring residential aged care.”

People Living with Dementia and the Royal Commission into Violence, Abuse, Neglect and Exploitation, 2 February 2022

The Disability Royal 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.

Violence, abuse, neglect and exploitation are key terms defined by the Disability Royal Commission to include illegal physical assault and sexual assault, failures in care, and restrictive practices.

The Disability Royal Commission is investigating ways to:

  • Better prevent and protect people with disability from violence, abuse, neglect and exploitation
  • Achieve best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation
  • Promote a more inclusive society that supports people with disability to be independent and live free from violence, abuse, neglect and exploitation.

These investigations are considering a range of settings and contexts including schools, workplaces, hospital and health facilities, group homes, family homes, community facilities and prisons.

The Disability Royal Commission is taking a human rights approach and is informed by the rights recognised by the United Nations Convention on the Rights of Persons with Disabilities. 

The Disability Royal 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.

How Dementia Justice is Informing the Royal Commission

The Disability Royal Commission is relevant to people living with dementia because dementia is a disability. The World Health Organisation has stated for over a decade 

Dementia is … one of the major causes of disability and dependency among older people globally.

People living with dementia experience many of the forms of violence, abuse, neglect and exploitation that have been the focus of the Disability Royal Commission’s work, including use of restrictive practices and violence in segregated and institutional settings (notably residential aged care facilities and older person’s mental health facilities).

Dr Linda Steele and Kate Swaffer from our research team made a submission to the Disability Royal Commission based on the findings of the Safe and Just Futures Project.

They are also drafting another submission based on the results of the Dementia Redress Project informed by focus groups with people living with dementia, their care partners, family members and close friends.

Our newest project partner, Interrelate, provides counsellors at the Dementia Redress Project focus groups. Interrelate is also providing free, independent, and confidential counselling services to support people affectedby the Disability Royal Commission. 

Another project partner, People with Disability Australia (PWDA), has made numerous submissions to the Disability Royal Commission and supports the Disabled People’s Organisations Australia campaign to #EndSegregation. PWDA are also providing support to people wanting to make submissions to the Disability Royal Commission.

Share your Story

The Commission is seeking personal experiences of:

  • People with disability
  • 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.

You can share your personal experience by making a submission (either online, in writing, via telephone email, or video or audio recording) and choose whether you want your submission to be made public or kept confidential. The final date for submissions is 31 December 2022.

Alternatively, you can share your story in a confidential, private session with a Commissioner (either in person, via video or telephone call). Registrations for private sessions close on 30 June 2022. 

Support to Share Your Story

There are numerous organisations that will support you to share your story with the Disability Royal Commission, including our project partners: People with Disability Australia, and Interrelate.

Your Story Disability Legal Support can provide legal support to people involved with the Disability Royal Commission. Your Story empowers people with disability to safely share their story with the Royal Commission and connect with local support services. The service delivers a person centred, trauma-informed and culturally-safe legal service. 

More information

Human Rights for People Living with Dementia, 1 November 2021

Human Rights Day is held annually on 10 December – the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights. This year’s theme is “Equality – Reducing inequalities, advancing human rights.”

People living with dementia should be able to exercise their human rights and fundamental freedoms in all aspects of their daily lives. And yet, people with dementia are frequently denied their human rights both in the community and in residential aged care. 

People living with dementia have the right to be free from violence, abuse and neglect in aged care. However, if this does occur, it is a human right for them to access redress (a way of righting those wrongs).

The human right to equal access to justice means people living with dementia should have the same access to redress as other groups in society. Unfortunately, even after a Royal Commission into aged care, we still do not have a redress scheme for people who experience violence, abuse and neglect in aged care.

So people living with dementia are at an even greater disadvantage than other groups who can access redress for institutional violence, such as people who experienced sexual abuse in child welfare institutions.

The Dementia Redress Project

The Dementia Redress project explores the need for redress of violence, abuse and neglect of people living with dementia in residential aged care. This website, Dementia Justice, was recently launched as part of the project to increase awareness and enable greater participation of people living with dementia and their care partners and family.

The Dementia Redress project was founded on the perspectives and lived experiences of the dementia community in collaboration with Dementia Alliance International and People with Disability Australia.

The Research Team is led by Dr Linda Steele, a socio-legal researcher at the University of Technology Sydney and Kate Swaffer, an independent researcher and award-winning international dementia and disability rights campaigner.

‘We want to find out what it means to the dementia community to redress, or set right, the wrongs of past violence, neglect and abuse in aged care,’ said Dr Steele. ‘We also want to explore best practice for an inclusive and accessible redress scheme, including how the legal profession could work with the community in a redress scheme.’

As part of the project, people living with dementia, care partners and family members of people with dementia who have been abused or neglected in aged care, and dementia and disability advocates and lawyers are invited to participate in a focus group or interview.

‘We hope the benefits of this project will include justice, healing and enhanced wellbeing for victim/survivors and the dementia community, and education and advancement of protections within future aged care and legal systems’ said Ms Swaffer.

Project findings will be shared with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the dementia community, government, aged care sector, dementia, disability and older persons’ advocacy organisations, and professional associations.

Safe and Just Futures

Swaffer and Steele have a long interest in human rights and worked together with Professor Richard Fleming and A/Prof Lyn Phillipson on the project Safe and Just Futures for People Living with Dementia in Residential Aged Care. This project investigated how human rights law might be used to contest segregation of people living with dementia in residential aged care facilities. 

The Safe and Just Futures project contributed to policy and law reform discussions around aged care and raised awareness among lawyers, advocates, human rights practitioners and policy makers about segregation and confinement in residential aged care and the importance of overcoming barriers to realising human rights of people living with dementia – including submissions to the Aged Care and Disability Royal Commissions. For more information read the Safe and Just Futures Report.

As part of Safe and Just Futures, a Summit on Human Rights for People with Dementia Living in Residential Aged Care was held in 2019. Participants at the summit, including people living with dementia, care partners, activists and academics, contributed to an Anthology on Human Rights of People Living with Dementia. 

The aim of the anthology was to showcase diverse perspectives in favour of human rights of people living with dementia in order to communicate to law and policy makers and the wider community the growing support for recognising human rights of people living with dementia.

For example, Bobby Redman, dementia advocate diagnosed in 2015, states in the anthology:

‘Education is required for greater understanding; practices need to be reviewed in order that people receive the services and support that they require; and the law needs to be enforced to protect people from abuse. We don’t cease to be human when we develop dementia, we too have the right to live the best life we can.’

‘The Safe and Just Future project established human rights violations in aged care in Australia and the challenges of addressing them,’ said Dr Steele. ‘Dementia Redress is the next step, considering how we right the wrongs of these violations and ensure the past is not forgotten in our attempt to make a better future.’ 

How the broader community can support the human rights of people living with dementia , by Eileen and Dubhglas Taylor (from an interview published in the Anthology)

The broader community can support human rights of people living with dementia by making a choice to support rights in general. This requires a growing awareness of what dementia is and the needs of people living with dementia.

As such, [they must] know about, accept and respect, human rights, and trauma of discrimination. They must understand the concept of full inclusion and the right to citizenship. They must facilitate, promote, and provide dementia friendly environments through signage, physical changes, and learning about what it means to be dementia friendly and inclusive. 

In a dementia-friendly community people living with dementia are understood, respected and supported in such a way that people with dementia can continue to live in the way they want to and in the community they choose.

For more information:

Project Partners

Dementia Alliance International – Dementia Alliance International (DAI) is a global group, of, by and for people with dementia, advocating for the voice, rights and needs of people with dementia, whose vision is a world where all people are fully valued and included. People with any type of dementia, of any age can join DAI here for free.

People with Disability Australia – We have a vision of a socially just, accessible and inclusive community, in which the human rights, belonging, contribution, potential and diversity of all people with disability are recognised, respected and celebrated with pride.

Interrelate – Our vision is of a world where healthy relationships are the norm.

Publications and Resources

Project Report

Dementia Reparations Principles

Executive Summary

Easy Read Summary

Easy Read of Project Report

Academic journal articles

Article by Linda Steele and Kate Swaffer published in Health and Human Rights journal.

Article by Linda Steele, Kate Swaffer, Hope Siciliano, Evelyn Rose, Bill Mitchell, Karen Kobier, and Brenda Bailey published in Dementia journal. 

Article by Linda Steele and Kate Swaffer published in Scandinavian Journal of Disability Research.

​Selected Presentations

Australian focused launch of ‘Dementia Reparations Principles’

International launch of ‘Dementia Reparations Principles’

Community Resources (Australia)

Advocacy and support

If you would like to talk about your feelings or experiences about violence, abuse and neglect here are some places to contact:

  • Interrelate: 1300 473 528
  • Lifeline: 13 11 14
  • 1800 Respect: 1800 737 732
  • National Dementia Helpline: 1800 100 500

If you would like advocacy support please contact:

  • PWDA on 1800 843 929
  • Dementia Alliance International via email info@infodai.org

Legal support

If you need to speak to a lawyer please contact one of the organisations below.

Australia-wide:

South Australia:

Australian Capital Territory:

​Northern Territory:

​Queensland:

Western Australia:

Victoria:

New South Wales:

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