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 Studyestimated 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.

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.”

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.

Submission to the Disability Royal Commission
Download PDF • 13.30MB

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 affected by 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

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