- Linda Steele
Human Rights for People Living with Dementia
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:
Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care By Linda Steele, Kate Swaffer, Ray Carr, Lyn Phillipson & Richard Fleming
Human Rights and the Confinement of People Living with Dementia in Care Homes By Linda Steele, Kate Swaffer, Ray Carr, Lyn Phillipson & Richard Fleming.
Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes By Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming.
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.