Living with Dementia Survey

In 2025, the first national Living with Dementia Survey will be conducted. The AIHW and University of Canberra will be recruiting people living with dementia and/or those caring for someone living with dementia to complete the survey. If you are interested in participating, please contact the research team at 1800 964 333, or [email protected].

The Australian Institute of Health and Welfare (AIHW) and University of Canberra are conducting the first national Living with Dementia Survey in 2025.

The Australian Institute of Health and Welfare (AIHW) is Australia’s authoritative source of health and welfare data and analysis. The AIHW provides governments, stakeholders, and the broader community with valuable evidence to inform and support better research, policy, and service delivery, leading to better health and wellbeing.

On this page, you will find some brief information about the Living with Dementia Survey, and how you can participate in the study.

What is the Living with Dementia Survey?

The AIHW has commissioned the University of Canberra to run the Living with Dementia Survey. The survey aims to gather information on the experiences of people who have been diagnosed with dementia and the experiences of family and friends providing care and support to someone living with dementia in the community, including experiences and interactions with health, aged care, and other service or support providers.

The survey will provide the Australian Government with information on the needs of people living with dementia, and people caring for someone living with dementia and whether their needs are being met. This information will help to prioritise work under the National Dementia Action Plan.

What kinds of questions are included?

In addition to general questions about your age, sex, birthplace, education, cultural background, and income, the survey will ask about your experience with:

  • Receiving a dementia diagnosis
  • Post-diagnosis treatment/services
  • Stigma
  • Coordination of care/service navigation
  • Support and services as carers; and
  • Care training.

How is survey information stored and protected?

The survey results are confidential, and strictly protected by law. Section 29 of the Australian Institute of Health and Welfare Act 1987 prohibits the release of any information about individuals collected in the survey. The data will be collected, de-identified, and securely stored by the University of Canberra.

The research complies with the Privacy Act 1988, and the information collected in the survey is only used for research purposes. It is important to note that this means participant anonymity is ensured, and survey responses can never be used for any form of law enforcement.

We do not identify individuals, and any potentially identifying information attached to your response (such as your address) will be securely destroyed. The results will only be reported in aggregate form.

The AIHW Ethics Committee has reviewed and approved the survey project.

Register your interest in joining the Living with Dementia survey

We are currently recruiting people living with dementia and carers of people living with dementia, who are aged 18 or older and residing within the community (that is, at home, retirement village or independent living), to complete the survey.

A gift voucher will be offered to say thank you for participating in the surveys.

If you would like to register your interest, please call the University of Canberra project team at 1800 964 333, email at [email protected], or visit Dementia Survey. 
Alternatively, you can directly register your interest on StepUp for Dementia Research.

If you have any questions or concerns about the research, please contact:

Dementia Data Improvement Unit, Australian Institute of Health and Welfare
Email: [email protected]