Community Voices in Dementia Prevention: Co-designing a Dementia Risk Reduction Program in Rural Australia

Danna Lee

doi:10.25907/01018

Over 400,000 Australians live with dementia, without an accessible cure, this figure is projected to exceed one million by 2065. Despite being the leading cause of death nationally, public understanding of dementia remains limited. Enhancing dementia literacy is essential, as up to 45% of cases may be preventable through management of modifiable risk factors. This knowledge gap is especially pronounced in non-metropolitan regions, where geographic isolation and restricted access to healthcare infrastructure contribute to elevated dementia risk. Co-design approaches have emerged as effective strategies for developing contextually relevant, community-informed health interventions. Therefore, the overarching aim of this thesis was to develop a community-led dementia risk reduction program in rural Australia. Study 1 (Chapter 3) investigated dementia literacy and awareness in Australia through an online and paper-based survey. A total of 283 respondents (mean age = 52.8, SD = 18.8, age range = 19 – 91, 74.6% females) completed a battery of validated dementia-related assessment tools, such as the Dementia Knowledge Assessment Scale, Lifestyle for Brain Health Index, Dementia Attitude Scale, and additional items related to the development of a dementia risk reduction (DRR) program. Variations in outcomes were also examined across sociodemographic characteristics and geographic locations. Due to the nonparametric nature of the data, results are reported as median and interquartile ranges, indicating moderate dementia knowledge (median = 26.0, IQR = 20.0 – 36.0), low modifiable dementia risk scores (median = -1.9, IQR = -4.2 – 0.4), and neutral attitudes towards dementia (median = 97.0, IQR = 91.0 – 103.0) among Australian adults. Gender and educational attainment were significant predictors across all dementia-related measures: females demonstrated greater knowledge and more positive attitudes, while males had higher risk scores. Higher educational attainment was consistently associated with better outcomes. No significant differences emerged across geographic locations. Study 2 (Chapter 4) employed a qualitative approach to explore rural Australians’ perspectives and lived experiences of healthy ageing and dementia awareness. A total of 24 participants (mean age = 74.9, SD = 7.4, age range = 65 – 88, 91.7% female) took part in five in-person focus group sessions held in the rural Queensland towns of Kilkivan and Goomeri, both classified as Modified Monash Model (MMM) 5 regions. The focus groups explored barriers and enablers influencing access to healthcare and dementia-related information in rural communities, with discussions centred on healthy ageing, modifiable dementia risk factors, and dementia awareness. Thematic analysis produced five themes: challenges of ageing in rural communities, frustrations with rural healthcare, rural interpersonal connections, rural perspectives on dementia, and accessible dementia information. These findings emphasised the need for dementia initiatives that reflect rural lived experiences and support place-based strategies tailored to local needs. Chapter 5 synthesised insights from Study 1 and 2, regarding the development of a DRR program, identifying preliminary considerations that informed the design of Study 3. In Study 1 survey respondents responded to 18 open-ended questions related to developing a DRR program. A frequency analysis was conducted to determine the most commonly selected responses, highlighting participants preferences and priorities. Similarly, Study 2, asked focus group participants to share their perspectives on how a DRR program could be developed and implemented within their community. Thematic analysis identified key themes around community interest, preferred delivery formats, and barriers to program uptake in rural areas. Across both studies, participants expressed a strong preference for in-person, group-based programs that leverage local resources, and emphasised the need for accessible dementia education and support tailored to individuals with dementia and their caregivers. Study 3 (Chapter 6) co-designed a community-led, place-based DRR initiative with rural Australians through three collaborative workshops: 1) mapping community assets, 2) developing locally grounded solutions, and 3) tailoring a DRR program to community needs. A total of 23 participants (mean age = 65.3, SD = 15.7, age range = 28 – 89, 82.6% female), including rural residents (n = 16) and stakeholder (n = 7) from the local healthcare organisations and local government, participated in the co-design. Residents identified caregivers of individuals with chronic health conditions (including but not limited to dementia) as a priority group for the DRR program, recognising their heightened risk of dementia due to caregiver burden and limited local support. The resulting DRR program aimed to empower caregivers through three core pillars: fostering mental wellbeing, promoting healthy lifestyle behaviours, and providing accessible dementia-related information. The co-design approach ensured the DRR program aligned with community values, priorities, and strategies for reducing dementia risk. Collectively, this research identified the need for tailored, community-led interventions to reduce dementia risk in non-metropolitan populations, who face compounded challenges from geographic isolation, limited resources, and systemic inequities. It highlights the importance of understanding how local context shapes perceptions and experiences of dementia, and demonstrates the value of place-based approaches in rural communities. Through a participatory framework, this thesis offers a model that underserved communities can adapt for dementia prevention, education, and care, paving the way for scalable, locally driven solutions that raise awareness and expand support across rural Australia.

Community Voices in Dementia Prevention: Co-designing a Dementia Risk Reduction Program in Rural Australia

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