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Research Opportunity: Young-onset dementia: pathways to care, gaps, barriers and positives

Researchers from the Department of Psychiatry, University of Melbourne, are currently working on a research project on young-onset dementia (YOD) care called Joint Solutions.

The project aims to provide data on the gaps and barriers along the pathways of care for YOD, from pre-diagnosis to post-diagnosis. Read Project Information Statement for more details.

Young-onset dementia (YOD) is a type of dementia that starts before the age of 65, affecting around 5-10% of all dementia cases. In Australia, about 28,000 people are estimated to have YOD. While less common than dementia in older adults, those with YOD often face delays in diagnosis and struggle to access appropriate support services.

Researchers are collecting information via questionnaires (followed by focus groups), with the main stakeholder groups. Individuals in the following groups are invited to complete a brief survey.

  • Those with lived experience - people living with YOD click here and their caregivers click here
  • Clinicians working with people who have YOD click here
  • Professional and community services, including NDIS providers click here
  • General practitioners click here

The survey data will help the project to inform a national system of care and roadmap of responsibility for people living with young-onset dementia.

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