At UQCCR, we are dedicated to involving those impacted by dementia in our research. With close to half a million people living with dementia in Australia,1 our Dementia and Neuro Mental Health Research Unit at UQCCR is at the forefront of this critical field.
In recognition of the expertise brought by Lived Experience Advocates, the Dementia and Neuro Mental Health Research Unit established a national Consumer and Community Involvement Group (CCIG) in 2020. This group plays a pivotal role in shaping our research projects. During our monthly CCIG meetings we discuss all aspects of our research, from idea generation to disseminating our results. Dennis Frost, CCIG member, highlights the value of this involvement: “Being involved in this CCIG gives me confidence that the used methodologies will be appropriate and the findings are valid.”
Dementia advocates have been vital in developing our MRFF funded (>$1.6 million) “My Anxiety Care" research project - a new technology-assisted and remotely delivered psychotherapeutic intervention aimed at helping people living with dementia manage anxiety. Anxiety is a major concern for people living with dementia, with up to 70% experiencing anxiety symptoms.2
Lived experience experts worked closely with the research team to co-design the "My Anxiety Care" platform and later assisted in developing recruitment materials for a randomised controlled trial.3 Their involvement ensures the research aligns with the needs of those the project aims to support.
Wider community involvement has also been essential to the project. Our community partner, Lions clubs, have helped raise money to pay for Amazon Alexa devices that are sent to all trial participants receiving therapy. Their generous contributions (via a Lions Australia grant) have allowed the Dementia and Neuro Mental Health Research Unit to establish an equipment loan library for the My Anxiety Care project. This means people who do not have their own technology can still take part in the research. Lions representative Peter Wilkes, also developed a comprehensive strategy for recruiting participants and disseminating research findings via Lions clubs nationwide.
Consumer involvement in research can be transformative for people living with dementia. Dementia advocate and MRFF project investigator, Ann Pietsch emphasises: "I feel that I have been able to represent people like myself and add to the researchers’ understanding of dementia and about living with dementia. I have been involved in reviewing research proposals and felt respected, valued, and supported by the committee and researchers. I hope that my involvement will contribute to making the research relevant and meaningful for people with dementia. It also keeps me aware of the current dementia research and helps to keep my brain active."
Associate Professor Nadeeka Dissanayaka, My Anxiety Care program lead and director of the UQCCR’s Dementia and Neuro Mental Health Research Unit, adds: “Meaningful involvement of lived experience experts and community in research is paramount for successful translation of our research innovations into the real-world. We are grateful to all involved and thank our CCIG for their continuous commitment.”
Learn more about the "My Anxiety Care" project.
To learn more abut our CCIG, please contact Dr Deborah Brooks.
1 https://www.dementia.org.au/about-dementia/dementia-facts-and-figures
2 Pacas Fronza G et al. Anxiety Symptoms in Australian Memory Clinic Attendees with Cognitive Impairment: Differences Between Self-, Carer-, and Clinician-Report Measures. Clin Gerontol. 2024 Jan-Dec;47(2):215-223. doi: 10.1080/07317115.2023.2231940.
3 Dissanayaka et al. A single-blind, parallel-group randomised trial of a Technology-assisted and remotely delivered Cognitive Behavioural Therapy intervention (Tech-CBT) versus usual care to reduce anxiety in people with mild cognitive impairment and dementia: study protocol for a randomised trial. Trials. 2023 Jun 20;24(1):420. doi: 10.1186/s13063-023-07381-2
