• A Charles Sturt University PhD candidate is recruiting people living with dementia for a study into their attitudes, needs and preferences towards Voluntary Assisted Dying
• Dementia is the second leading cause of death for Australians
• Legal Voluntary Assisted Dying came into effect in NSW on Tuesday 28 November 2023

People living with dementia are invited to participate in a unique study exploring their attitudes, needs and preferences towards Voluntary Assisted Dying in Australia.

Charles Sturt University PhD candidate in the School of Social Work and Arts Ms Adrienne Matthys is conducting the study in the wake of Voluntary Assisted Dying (VAD) becoming legal in New South Wales, joining other jurisdictions including Queensland, Tasmania, Victoria, South Australia and Western Australia.

“While VAD is now legal in more jurisdictions of Australia, people living with dementia are generally ineligible to access it,” Ms Matthys said.

“This study is not about whether it is right or wrong for people with dementia to access VAD, but instead seeks to determine what they themselves think, feel and want around accessing it.

“That means speaking directly with people living with dementia, rather than hearing about them from their support networks.”

Ms Matthys is currently recruiting participants living with dementia to complete either an online or hard-copy survey, placing their voices at the centre of important policy-making and social conversations around VAD, conversations where they are largely left out.

“Dementia is the second leading cause of death for Australians, and recent provisional data highlighted by Dementia Australia suggests that it will soon become the leading cause of death,” she said.

“It’s also estimated by the Australian Institute of Health and Welfare that 401,300 Australians are living with dementia – a number which is predicted to double by 2058.”

These alarming statistics are driving Ms Matthys’ studies, who said she hopes to promote the meaningful inclusion of people living with dementia in VAD research and policy-making and to empower them to contribute as stakeholders of significance in this heavily contested space.

“This study is about supporting future VAD policy development and review, informed by potential end-users and living-experience experts,” she said.

“It’s also important that we uphold the human rights of people living with dementia, particularly the realisation of their right to contribute to research-informed practice.

“I must reiterate, this is not an argument of being for or against VAD, but rather hearing the views of those who may or may not choose to pursue it.”

Associate Professor in the Charles Sturt School of Social Work and Arts Dr Belinda Cash said the research project challenged problematic misconceptions that people living with dementia are unable to participate in research and policy development.

“The respectful and ethical way that Adrienne has designed and is conducting this research is a powerful exemplar for how research can meaningfully centre the voices of people living with dementia in critical social debates,” Dr Cash said.

“These research findings will be important for VAD policy reform, but her inclusive research design will also benefit future work with other groups whose voices may not be appropriately included in the critical decisions at legislative, policy and practice levels that impact their lives.”

For those who have completed the survey, Ms Matthys will then invite participants to be a part of a voluntary interview to elaborate on some of their responses.

One person living with dementia and assisting Ms Matthys’ research in an advisory capacity is Ms Eileen Taylor. She said the project was important to hear from those directly impacted by the laws and regulations around VAD.

“This is an important project to participate in if you are interested in accessing VAD yourself if you are living with a diagnosis of dementia,” Ms Taylor said.

“It is easy to participate as you can either have a Zoom link sent to you, for those who prefer to see the interviewer, or have a phone call with the interviewer.

“I participated over Zoom and felt heard by the interviewer, and that my contributions were valuable to the research project.”

If you are a person living with dementia or know someone who is, the survey can be accessed here. For further information on the study contact VADresearch@csu.edu.au.

ENDS