The Neuropsychiatry Centre RMH are currently working on a research project on young-onset dementia (YOD) care called Joint Solutions, which has been auspiced by the Young Persons in Nursing Homes National Alliance through a governmental grant. It aims to provide data on the gaps and barriers along the pathways of care for YOD, from pre-diagnosis to post-diagnosis.
Introduction
Thank you for your interest in participating in this research project. The following few pages will provide you with further information about the project, so that you can
decide if you would like to take part in this research.
Please take the time to read this information carefully. You may ask questions about anything you don’t understand or want to know more about.
Your participation is voluntary. If you don’t wish to take part, you don’t have to. If you begin participating, you can also stop at any time.
What is this research about?
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.
Managing the cognitive, behavioural, and functional changes that come with YOD requires high-quality, evidence-based services, which are currently fragmented and unequal in Australia.
People with YOD, often diagnosed in middle age, also deal with the psychosocial impact of dementia, including challenges related to employment, driving, finances, and changes in relationships and identity. Post-diagnosis concerns include accommodation options, leisure activities, family dynamics, and advance care planning. Managing YOD effectively
requires a holistic family approach.
Navigating the journey from pre-diagnosis to post-diagnostic care for YOD is challenging, with different services and supports available in each State and Territory in Australia. There's a lack of clear guidelines and accessible knowledge regarding the services needed at different stages of YOD, and many existing services are designed for older adults, not being age-appropriate for those with YOD.
Accessing the range of services for YOD is complicated, with care falling at the intersection of health, disability, and aged sectors. People with YOD often experience long waits for diagnosis and support, are offered services that aren't suitable for their age, and may fall through the gaps in these services. The project aims to identify these gaps and barriers, advocating for flexible, individualised, affordable services that provide meaningful engagement for individuals with YOD.
What will I be asked to do?
Should you agree to participate, this part of the research will involve completion of a questionnaire that will take you 20-30 minutes to complete. You will be able to take a
break and return to the questionnaire if you like. This questionnaire will ask you about your experiences along pathways of care for young-onset dementia – from the
perspectives of a person with young-onset dementia, a family/friend caregiver, a clinician who works with people with young-onset dementia, or a healthcare provider.
You can also leave your name and contact details if you would like to participate in a focus group so that you can provide further information about your experiences with
young-onset dementia. Please note that these identifying contact details will be removed from the questionnaire results so that we will not be able to identify your
responses.
The Neuropsychiatry Centre RMH are collecting information via questionnaires (followed by focus groups), with the main stakeholders being:
- those with lived experience - people living with YOD (https://redcap.link/livingwithyod) and their caregivers (https://redcap.link/yodcaregiver)
- clinicians working with people who have YOD (https://redcap.link/yodclinician)
- professional and community services, including NDIS providers (https://redcap.link/yodservices)
- general practitioners (https://redcap.link/yodGP)