Parkinson’s Australia is inviting you to take part in a national survey on the experiences of people living with Parkinson’s and their caregivers. Your input will guide the Parkinson’s Disease Education Exchange (PDEX) project, which aims to build a health‑professional education program shaped directly by lived experience.
Why this matters
Many health professionals report low confidence in recognising early signs of Parkinson’s. Early symptoms are often non‑motor, including constipation, sleep disturbances, depression, anxiety, fatigue, and changes in smell. These symptoms appear in many other health conditions and are often missed in routine care. Non‑motor symptoms can also appear years before movement changes, making early diagnosis more complex.
Non‑motor symptoms affect several body systems, including digestion, sleep, thinking, memory and mood. This complexity requires a broad clinical knowledge that may not be covered in their training. As a result, non‑motor symptoms are often underrecognised, undertreated, and contribute to delayed diagnosis.
PDEX aims to close these gaps by strengthening the understanding of Parkinson’s. This includes experiences with diagnosis, management of symptoms, access to therapies, communication with your care team, and the pressures placed on caregivers.
Your input will help shape Parkinson’s education that aims to:
- Improve recognition of early signs of Parkinson’s and increase early intervention.
- Ensure clinicians understand current evidence‑based medications, treatments and management.
- Build confidence in responding to both motor and non‑motor symptoms.
- Reduce delays that many people face before receiving a diagnosis.
- Improve lifestyle, health and wellbeing outcomes for people living with Parkinson’s.
Your feedback will help ensure that health professionals receive training informed by lived experience.
Who can take part
We invite:
- People living with Parkinson’s
- Caregivers (spouses, partners, family members and friends who care for a person living with Parkinson’s)
About the survey
- Open until: 10 March 2026
- Time required: 10–15 minutes
- Confidentiality: Responses are confidential and used only for research and program planning
- Partners: Australian General Practice Accreditation Limited (AGPAL) and Client Focused Evaluation Program Surveys (CFEP Surveys)
Your voice, your needs
Your voice is essential. The more people who take part, the stronger and more representative the training resources will be.
👉 Complete the survey now:
https://www.surveymonkey.com/r/LQGYBDN
Please complete the survey as soon as possible and share it widely. Your input will directly shape future Parkinson’s care in Australia.
