About me
I am a researcher and human rights advocate. I live with dementia. I live in Sydney.
I am a member of the NSW Ministerial Advisory Council on Ageing (MACA).
I was diagnosed with younger onset dementia in 2012.
Before that, I worked in risk management and finance at the Australian Prudential Regulation Authority (APRA).
I work at UNSW Sydney as a Lived Experience Dementia Consultant. I am a chief investigator on a UNSW project led by Dr Craig Sinclair.
Past roles
- Formerly Human Rights Advisor, Dementia Alliance International (DAI). DAI is an organisation led by people living with dementia.
- Formerly a member of the Dementia Australia Consumer Network.
- Formerly affiliated with HammondCare.
I believe people with dementia have the same rights as everyone else. This includes the right to make our own decisions, with support if we want it. Research and policy about us should be made with us.
Research
My research looks at:
- Supported decision-making. How people with dementia can be supported to make their own decisions.
- Involving people with dementia in research. How to do this fairly, accessibly and without tokenism.
- Human rights and dementia. Including the UN Convention on the Rights of Persons with Disabilities.
- Aged care. Including respectful language and the use of restrictive practices.
- Advance care planning. Making it inclusive for people with dementia.
Current project
I work with Dr Craig Sinclair at UNSW Sydney on supported decision-making. This includes the BUDDY project. BUDDY trains aged care staff to support decision-making for people with dementia and acquired disability. Read the UNSW news story about the project.
Publications
A full, up-to-date list is on my ORCID record.
Journal articles and preprints
- Sinclair C, … Flavin T, et al. (2026). Building capacity for supported decision-making for people with dementia and acquired disability (BUDDY) project: a quasi-experimental evaluation of a training program for Australian aged care staff. OSF Preprints. doi:10.17605/OSF.IO/RU3BF
- Wesson J, … Flavin T, Brodaty H (2023). Australian National Aged Care Classification behaviour assessment and people living with dementia in residential aged care: inclusive language for reform? Australasian Journal on Ageing, 42(1). doi:10.1111/ajag.13142
- Flavin T (2020). Supported decision making for people living with dementia. Dementia, 19(1). doi:10.1177/1471301219876712
- Flavin T (2020). The importance of the lived experience: a researcher living with dementia. Dementia, 19(1). doi:10.1177/1471301219876428
- Flavin T, Sinclair C (2019). Reflections on involving people living with dementia in research in the Australian context. Australasian Journal on Ageing, 38(S2). doi:10.1111/ajag.12596
Conference abstracts
- Chesterman J, Flavin T (2025). What's supported decision making got to do with advance care planning? BMJ Supportive & Palliative Care. doi:10.1136/spcare-2025-acp.22
- Flavin T (2025). Inclusive advance care planning in dementia – planning for life before death? BMJ Supportive & Palliative Care. doi:10.1136/spcare-2025-acp.10
- Wesson J, … Flavin T, … Brodaty H (2024). Behaviour support planning in residential aged care – pilot to explore implementation of new legislation in Australia. Alzheimer's & Dementia, 20(S4). doi:10.1002/alz.084214
- Flavin T (2020). Human rights in the context of dementia. Alzheimer's & Dementia, 16(S8). doi:10.1002/alz.036434
Articles and opinion
- Flavin T (2025). Will and preferences in the context of dementia: retaining personhood in a changing world with a changing brain. AGAC Issue Focus, Spring/Summer edition. Read on the AGAC website
- Flavin T (2025). Let's create a social directive. Australian Ageing Agenda.
Advocacy and international work
United Nations, New York (2022 and 2023)
I attended the UN Open-Ended Working Group on Ageing in New York in 2022 and 2023. In April 2023 I spoke at the 13th session of the UN Open-Ended Working Group on Ageing in New York. I went to bring the voice of people living with dementia into the talks about a UN convention on the rights of older people. My trip was supported by HelpAge International and the Global Alliance for the Rights of Older People (GAROP). Read the OPAN news story.
Global Alliance for the Rights of Older People (GAROP)
GAROP supported my attendance at the UN Open-Ended Working Group on Ageing in 2023.
Older Persons Advocacy Network (OPAN)
I am a member of these OPAN groups:
- National Older Persons Reference Group (inaugural member)
- Supported Decision-Making Special Interest Group
- Human Rights Advisory Group
- Sexual Assault and Dementia Special Interest Group
Ready to Listen
Ready to Listen is an OPAN-led project. It helps aged care providers prevent and respond to sexual assault in residential aged care. I was a panellist on its webinar, Preventing sexual assault of people with dementia in residential aged care. In 2022 I spoke in support of its Charter of Sexual Rights in Residential Aged Care.
Submissions
I write submissions to governments and the United Nations. Submissions marked “DAI” were written in my former role as Human Rights Advisor for Dementia Alliance International.
- 2026 – Submission No. 6 to the NSW Legislative Assembly Committee on Ageing and Disability, inquiry into supported decision-making. Inquiry page
- 2025 – DAI submission on Aged Care Rules release 3 (restrictive practices). PDF
- 2025 – DAI submission to NSW Department of Communities and Justice on a legislative framework for restrictive practices. PDF
- 2025 – DAI submission to the SA Office of the Chief Psychiatrist, review of the Mental Health Act 2009.
- 2024 – DAI submission on the New Aged Care Act consultation. PDF
- 2024 – DAI submission to the UN OHCHR assistive technology review. PDF
- 2024 – DAI submission to the NHMRC review of the Consumer Involvement Statement. PDF
- 2024 – DAI submission on the exposure draft of the new Aged Care Act.
- 2023 – Ensuring the inclusion of people with dementia in the Older Persons' Convention (DAI submission to the UN Open-ended Working Group on Ageing). PDF
Media and talks
- 2025 – UNSW Newsroom: Project puts people with dementia at the heart of decisions.
- 2023 – Dementia Alliance International: Featuring Theresa Flavin, IWD inspiring DAI woman for 2023.
- 2022 – Quoted in Australian Ageing Agenda news coverage on aged care classification language.
- 2021 – Guest on NPS MedicineWise podcast, episode 22.
- Panellist, OPAN #ReadyToListen webinar: Preventing sexual assault of people with dementia in residential aged care.
- 2023 – OPAN news: Time is running out, dementia advocate tells UN.
- 2023 – AGE Platform Europe report on the 13th session, which names me as a self-advocate: Civil society stronger than ever.
- Presenter, Australian Commission on Safety and Quality in Health Care learning module on quality use of medicines.
Contact
Email: Theresa.flavin@protonmail.com
ORCID: 0009-0009-5791-4595
X (Twitter): @flavin_theresa
LinkedIn: Theresa Flavin
I may take a little time to reply. Thank you for your patience.