Header image

“It should be MY choice”: Voluntary assisted dying survey research with people living with dementia

Tracks
Federation Ballroom / Plenary
Dementia
Evidence Based Policy
Evidence based practice
Human Rights
Wednesday, November 13, 2024
2:45 PM - 3:00 PM

Speaker

Ms Adrienne Matthys
PhD Candidate
Charles Sturt University

“It should be MY choice”: Voluntary assisted dying survey research with people living with dementia

Abstract

The development of research-informed policy is highly dependent on the equal representation of all stakeholders. Yet in Australian voluntary assisted dying (VAD) research, the voices of people living with dementia are currently excluded from the research narrative. The exclusion of people living with dementia from VAD research has serious implications for the development of VAD policy, and the delivery of equitable access to end-of-life care services. As such, this paper presents the findings of a survey conducted as part of a broader mixed methods project exploring the attitudes, preferences, and needs of Australians living with dementia relating to VAD access. Responses were received from 36 participants through a series of closed and open-ended questions. The strong views held by these participants demonstrate the necessity of their inclusion in this research. The participants spoke to the highly personal nature of VAD as an end-of-life care choice, and about the importance of human rights in this discourse. This research serves as an important first step in addressing a serious gap in contemporary Australian VAD research. The findings of this study highlighted confronting disparities experienced by people living with dementia when accessing needs-based end-of-life care. Furthermore, the findings of this study demonstrate the need for continued VAD research that prioritises the voices of people living with dementia. This paper will be of interest to anybody interested in VAD and dementia research in Australia.

Biography

Adrienne has extensive experience working with older adults in community and residential contexts. She completed her Master of Gerontology at Charles Sturt in 2021, which included a research component exploring voluntary assisted dying. She has chosen to continue her research into voluntary assisted dying in Australian in line with her research interests in the delivery of safe and accessible end-of-life care options for people living with dementia, inclusive research design, and ethical issues associated with voluntary assisted dying.

Session Chair

Agenda Item Image
Anita Goh
Principal Research Fellow
National Ageing Research Institute

loading