Sue Pieters-Hawke

Dementia and Human Rights - Rising to the Challenge


Sue co-chairs the Federal Dementia Forum, is national ambassador for Dementia Australia, and works throughout the community to raise dementia literacy. She delivers education aimed at transforming how we ‘deal with dementia’, working at ‘reconceiving dementia’ beyond stigma, and on opportunities for partnerships and innovation that arise from fresh thinking. She supported her mother as she lived and died with dementia. Sue’s orientation as an advocate, advisor and educator is towards ‘collaborative changemaking’ that practically transforms available life choices and quality of life for people living with dementia and for people and organisations who care about them and for them.


The call by people living with dementia for our responses to them and to dementia generally to be based on respect for and enablement of Human Rights is well established in global leadership terms. The challenge is there for all of us in the sector to consider our willingness to support a rights-based approach to dementia, to explore the implications of such an approach, and to grapple with ‘making it real’. The significance and scope of the challenge is huge – intellectually, it provides a firm foundation for innovations that shift us from subtle dehumanisation and disempowerment towards enablement, agency and choices for people living with dementia. Practically, it calls for us to collaboratively and extensively redesign our attitudes, actions, language and models for support and care. These challenges are for everyone – the community at large, families and colleagues, government and policy makers, and organisations providing services and care. This presentation addresses these issues, and seeks to make a compelling case that transformation towards rights-based thinking and practice is the most principled and rewarding approach we can take in ‘dealing with dementia’.

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