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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.



Dementia Justice researcher Kate Swaffer is inviting people to participate in her PhD project on dementia and human rights. More information below on this important and exciting opportunity. Please email Kate.Swaffer@mymail.unisa.edu.au with any questions.


Background to the project: Two decades of formal inquiries and a Royal Commission into Quality and Safety in Aged Care in Australia, provide evidence people with dementia continue to have poorer health and social outcomes, than people without dementia. Evidence indicates current approaches to post diagnostic support for people with dementia are ineffective in stopping human rights violations, ending stigma, reducing dependence and disability, or improving self-determination and quality of life. Recent research specifically designed to improve post diagnostic experience for people with dementia remains biomedical, and repeatedly fails to include information and access to disability assessment and support to, for example, maintain a person’s self-determination, quality of life and independence.

 

There is a paucity of research specifically investigating recognition of human rights and in particular the disability rights of persons with dementias through reframing dementia as a disability. We need a paradigm shift to protect rights of all people with dementia and a new model of care or post diagnostic pathway that better supports them.

 

The current approach denies people access to disability support, or equitable health and social care including rehabilitation. The WHO 2017 global dementia action plan reinforced dementia as a condition causing disabilities, thus recognising human rights and the CRPD as central to dementia.

 

About the project: The overall aim of this project is to provide new evidence for ways to improve outcomes for people with dementia.

This will be done through investigating if supporting people newly diagnosed with dementia as people with acquired disabilities, at the time of their diagnosis, or soon after, has the potential to improve their post diagnostic experiences of stigma, self-determination, quality of life and independence.

It will also examine if not supporting people with dementia as people in this way is central to their known poor post diagnostic experiences, and ongoing known violations of human rights.

 

Participation is suitable for the following people: 

·       People with the lived/living experience of dementia who have been active advocates for at least two years

·       Care partners and family members of people with dementia (past or current) who have been active advocates for at least two years

·       Health care professionals

·       Formal advocates such as lawyers, and disability and human rights experts

·       Researchers

Participants with the lived/living experience of dementia, care partners or family members of someone with dementia (current or in the past), and health care professionals will have the opportunity to participate in one-to-one interviews, join an advisory group, and participate in roundtable workshops. 

Professional advocates, researchers and disability and human rights scholars will have the opportunity to be members of an advisory group and participate in roundtable workshops.

Participants will be emailed all of the participant information, consent forms and any other documents related to this project including where to go if support is needed at an state of the project. They will meet with the researcher on zoom as required to further explain the project, answer any queries, and to participate in the project.

 

Thank-you options: As the project is part of a PhD degree, it does not have funding for your time and expertise, hence there is no payment for these opportunities. Using zoom reduces costs such as travel. Hopefully, the opportunity to improve the post diagnostic experiences for people with dementia of any age, globally will serve as a thank you.

 

Other Information: There may be the opportunities for ongoing involvement in the progression of this work following the completion of this research project, which can be discussed at a later date. There may also be an opportunity to co-author a report or a journal article.

 

This project has been approved by the University of South Australia's Human Research Ethics Committee (Ethics Protocol 205733).

 

To participate, or for more information, please contact Kate Swaffer at the University of South Australia Kate.Swaffer@mymail.unisa.edu.au 

 



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

If you would like to keep updated on our ongoing research and advocacy on this topic, you can:

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.

© 2022 Dementia Redress Project

EMAIL: dementia.redress@uts.edu.au

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