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Current PhD Candidate at the University of South Australia, School of Justice and Society, investigating human rights in policy, systems, and clinical, health and social care practices for people with dementia and older Australians receiving community, respite or residential care, and dementia as a condition causing disability.
Working as an Independent Researcher, my recent and current research includes:
1) The right to rehabilitation for people with dementia: tackling stigma and implementing evidence-based interventions, CI, Monash University;
2) Redressing Neglect and Abuse of People Living with Dementia in Residential Aged Care, UTS, Steele (CI), Swaffer (AI), University of Technology Sydney;
3) Quality of Life – Aged Care Consumers (QOL-ACC) and Quality of Care Experience - Aged Care Consumers (QCE-ACC) projects, Flinders University, AI;
4) Co-designing a post-diagnosis pathway for young people with dementia to enable autonomy and self-management, CI’s Swaffer & Dr Monica Cations;
5) COGNISANCE (a 5-country project to improve the post diagnostic experience for people diagnosed with dementia), Sydney University, International Advisor;
6) Forward with Dementia, Collaborator and Advisor, Sydney University
7) Dementia Together, Sydney University
8) STRIDE project, Kings College & The London School of Economics, International Advisor.
PhD Candidate, University of South Australia; MSc Dementia Care; Bachelor of Psychology, Bachelor of Arts (Professional Writing and Communication); retired chef, retired nurse; Honorary Associate Fellow with the Faculty of Science, Medicine and Health, University of Wollongong. My first book on dementia, "What The Hell Happened to My Brain?: Living Beyond Dementia" authored in 2016, and my second dementia book "Diagnosed with Alzheimer’s or another dementia", was co-authored with Associate Professor Lee-Fay Low in 2016. My first two volumes of poetry were published in 2012 and 2016. I have publishd many other articles and occasionally write for aged care or dementia online journals and magazines.
I've been actively working with a major focus on human rights and access to the CRPD for people with dementia, and for dementia to be managed as a disability, and have given more than 800 invited key note presentations. Topics include dementia, human rights, dementia as a disability, discrimination, stigma, economic stigma, the lived experience of dementia, dementia-enabling design principles, language, Inclusive Communities, Prescribed Disengagement®, Models of care and post diagnostic pathways, Information Technology, Advocacy and Activism, dementia policy (local, national and global) and loss and grief. I actively support the Dignity Party in South Australia, my only political affiliation.
研究兴趣
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Dementiano. 3 (2023): 702-705
Critical Dementia Studiespp.151-167, (2023)
Linda Steele,Kate Swaffer,Hope Siciliano,Evelyn Rose, William John Mitchell,Karen Kobier, Brenda Bailey
Dementia (London, England)no. 8 (2023): 1738-1756
DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICEno. 3 (2023): 702-705
Alzheimer's & Dementiano. S5 (2023)
Journal of law and medicineno. 3 (2023): 761-776
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CRITICAL DEMENTIA STUDIES: An Introductionpp.151-167, (2023)
JOURNAL OF LAW AND MEDICINEno. 3 (2023)
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