None listed
Conditions
Brief summary
Every Australian deserves to age well. Dementia is a considerable threat to quality of life and is set to become the leading cause of death in Australia, yet we are not harnessing existing evidence for dementia risk reduction effectively. There is substantial evidence that 40% of dementia cases can be prevented by addressing modifiable risk factors and that individuals respond stronger to personal information than aggregated evidence. We know that individuals in longitudinal research projects benefit from receiving personal information, such as digital and biological markers that are indicators of dementia risk, yet we still don’t know if knowledge of this information will drive positive behaviour change. This project aims to bridge the gap between knowledge and practice by understanding how people respond to their digital and biological markers of dementia. We will co-design an online dashboard in which to present personal information, alongside personalized evidence-based recommendations to empower individuals to take steps toward positive behavior change. We will run co-design sessions with clinicians, participants, researchers, people living with dementia and their caregivers to ensure the messaging is presented in a safe, user-friendly and ergonomic fashion. We will then pilot test the impact of communicating this information on modifiable risk factors for dementia over time. We will also investigate how wellbeing, self-efficacy and quality of life change as a result of receiving this information. By harnessing personal resonance, we can enact positive behaviour change, improve quality of life and ultimately reduce dementia risk, ensuring Australians can live better for longer.
Interventions
Participants for INSIGHT co-design dashboard consultation were recruited from a diverse network, ensuring the development process reflected a broad range of perspectives, experiences, and backgrounds. This included individuals from the Wicking Dementia Research & Education Centre, Menzies Institute of Medical Research and a broad group of academics, researchers, general practitioners, geriatricians, neuropsychologists, social workers, psychologists, managerial and nursing staff from the ISLAND C
Participants for INSIGHT co-design dashboard consultation were recruited from a diverse network, ensuring the development process reflected a broad range of perspectives, experiences, and backgrounds. This included individuals from the Wicking Dementia Research & Education Centre, Menzies Institute of Medical Research and a broad group of academics, researchers, general practitioners, geriatricians, neuropsychologists, social workers, psychologists, managerial and nursing staff from the ISLAND Clinic; Tasmania’s one-stop interdisciplinary cognitive clinic. People with lived experience of dementia, their caregivers, indigenous representatives, members of the ISLAND Community Advisory Group and spokespeople from Dementia Australia, the national peak body for dementia in Australia, were all asked to contribute to co-design process. Two, 120-minute workshops were delivered face-to-face at the University of Tasmania’s Medical Science Precinct in Hobart, and two 90-minute workshops were conducted via Zoom to ensure geographical diversity of participants with intra- and interstate participation. A total of 40 participants contributed their expertise and lived experience, totaling seven hours of participation over four weeks. Participants were financially reimbursed for their time and travel expenses. During the iterative co-design process, participants focused on the psychological, behavioral and ethical implications of INSIGHT, ensuring the co-creation of a dashboard that was user-friendly, secure, safe, sensitive, evidence-based, intuitive, ergonomic, and designed to meet the needs of a diverse audience. The intervention provided to ‘Intervention’ participants as part of INSIGHT will be personalised biological and digital markers of dementia risk. This will be in the form of individual p-tau measurements (in pg/mL), apolipoprotein epsilon-E (APOE) e4 profiles (either e2/e2, e2/e3, e2/e4, e3/e3, e3/e4 or e4/e4) and cognitive results collected via the Cambridge Neuropsychological Test Automated Battery (CANTAB). These results will be presented in an interactive dashboard designed in Aim 1 via an extensive co-design consultation phase. This will be presented alongside further information on “What does this mean?”, where a lay-person summary will be provided explaining the meaning of results. Participants will access the dashboard via their own ISLAND Home Portal, an online interface with secure log-in. There will be further peer-reviewed academic references provided to participants for them to delve further should they wish to do so. The intervention will be available for 3-months, and will be downloadable via PDF should the participant wish to keep the information for their records or pass on to their GP or other health-care professional.
Sponsors
University of Tasmania
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Prevention
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
50 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
INSIGHT forms a sub-study as part of ISLAND (Island Study Linking Ageing and Neurodegenerative Disease), which recruits Tasmanian residents over 50. ISLAND participants who provided a blood sample in 2021 (approximately n=1500) will be eligible to take part in INSIGHTt. These participants were genotyped for apolipoprotein epsilon e4 (APOE4) and a proportion of these (n=750) have undergone analysis for plasma p-tau 181. Only participants who submitted an EOI to have their results communicated to them will be invited to take part in the study.
Exclusion criteria
Participants without biological or digital data needed for the current study (APOE4, p-tau measurement, CANTAB results)
Outcome results
None listed