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‘It should be my choice’: voluntary assisted dying needs and preferences of Australians living with dementia
Adrienne Matthys, Belinda Cash, Bernadette Moorhead. Ageing and Society, 2025-09-24
Topic: Risk, prevention and care in population studies
Abstract Voluntary assisted dying (VAD) is an end-of-life care option available to eligible Australians living with a terminal condition, though people living with dementia are typically ineligible to choose VAD as part of their end-of-life care. In order to develop equitable research-informed policy and practice, it is crucial to include the perspectives of all key stakeholders, including living experience experts whose voices are currently excluded from Australian VAD research. This study aims to capture the perspectives of people living with dementia by exploring their VAD-related needs and preferences. The study is grounded in a critical and phenomenological conceptual framework that prioritizes inclusive research design. Thirty-six people living with dementia in Australia self-selected to participate in an online survey. It found that the vast majority of participants wanted the option to access VAD themselves, and most wanted provisions for accessing VAD through advance care directives. Through open text responses, the participants expressed many concerns about potential end-of-life suffering and loss of dignity, with their VAD preferences often aligned with their wish to maintain autonomy and human rights. This is the first known Australian study to explore VAD from the perspective of people living with dementia, providing critical insights into their experiences as stakeholders in a highly contested policy and practice environment that is dominated by medico-legal voices. Centring on people living with dementia challenges misconceptions about their capacity to contribute to VAD research, demonstrating their importance as living experience experts and key stakeholders with clear needs and preferences for their end-of-life care.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Matthys, A., Cash, B., & Moorhead, B. (2025). ‘It should be my choice’: voluntary assisted dying needs and preferences of Australians living with dementia. Ageing and Society. https://doi.org/10.1017/s0144686x25100330
Vancouver
Matthys A, Cash B, Moorhead B. ‘It should be my choice’: voluntary assisted dying needs and preferences of Australians living with dementia. Ageing and Society. 2025. doi:10.1017/s0144686x25100330.
BibTeX
@article{matthys2025-456317c7,
author = {Matthys, Adrienne and Cash, Belinda and Moorhead, Bernadette},
title = {{‘It should be my choice’: voluntary assisted dying needs and preferences of Australians living with dementia}},
journal = {Ageing and Society},
year = {2025},
doi = {10.1017/s0144686x25100330},
url = {https://doi.org/10.1017/s0144686x25100330}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
Key findings
- Thirty-six people living with dementia in Australia self-selected to participate in an online survey.
- It found that the vast majority of participants wanted the option to access VAD themselves, and most wanted provisions for accessing VAD through advance care directives.
- Through open text responses, the participants expressed many concerns about potential end-of-life suffering and loss of dignity, with their VAD preferences often aligned with their wish to maintain autonomy and human rights.
- This is the first known Australian study to explore VAD from the perspective of people living with dementia, providing critical insights into their experiences as stakeholders in a highly contested policy and practice environment that is dominated by medico-legal voices.
- Centring on people living with dementia challenges misconceptions about their capacity to contribute to VAD research, demonstrating their importance as living experience experts and key stakeholders with clear needs and preferences for their end-of-life care.
Why it matters
In this online survey, 36 Australians living with dementia mostly wanted the option to access voluntary assisted dying themselves and through advance care directives. It reports their end-of-life care preferences, not any treatment, cure or prevention of Alzheimer's disease.
Study details
- Evidence strengthLow
How this study scored 33/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Ageing and Society) |
| Journal's citation record | 1 / 4 | Ageing and Society: journal h-index 135 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 1 / 7 | Cited 3 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.0 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 2 / 6 | Cited 2.5× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 1 / 6 | Cited by 1 other studies in this library |
| Still being cited | 1 / 4 | Cited 3 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 1 / 4 | Last-listed author Bernadette Moorhead: h-index 9 (OpenAlex, whole career) |
| Institution's track record | 0 / 3 | Charles Sturt University: institution h-index 321 (OpenAlex) |
| Multi-centre collaboration | 0 / 3 | OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete) |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 2 / 2 | Free to read |
| Total | 33 / 100 | — |
What each of these 20 components measures, and what this score is not →
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