Partnering with Chinese community organisations to engage older adults living with dementia in clinical trials
Pooi Kheng Lee

Date and Time

Friday, November 13, 2026, 9:30 AM - 9:45 AM

Theme / Track

Health, medical and integrated care

Presentation Format

Concurrent

Older people living with dementia and their family carers from migrant communities are under-represented in dementia research in Australia. Under-representation means that their needs and preferences are often missing in the evidence that informs policy and service design, contributing to supports that do not align with their realities. Within many migrant communities, including Chinese communities, dementia is often associated with cultural stigma, leading families to avoid acknowledging the condition or engaging with researchers. Language barriers further restrict access to information about research, especially for people with limited English proficiency. Family carers shoulder substantial caring responsibilities and may lack the time, capacity, or motivation to engage with research. These challenges are compounded by distrust of institutions and limited familiarity with research processes, At the same time, these diverse populations have extensive cultural and community assets, and the challenge and opportunity lies in mobilising these resources for isolated individuals. This presentation examines the role of Chinese community organisations and service providers as partners in the Befriending with GENIE study; a MRFF-funded pragmatic randomised controlled clinical trial. Co-designed and delivered in partnership with community organisations, the study aims to enhance social connectedness for people living with dementia. We describe how community partners contribute by advising on culturally appropriate language and communication strategies, and lending credibility to the research within their communities. We argue that partnership approaches are essential for engaging migrant communities in dementia research and reflect on the challenges and opportunities of sustaining meaningful partnerships within the constraints of research timelines and funding.

Keywords

CALD, Community, Dementia, Informal Caregivers, Social Isolation

Authors

Dr Anna Lane, Assoc Prof Anita Goh, Ms Pooi Kheng Lee, Dr Michelle Chiu, Ivy Sheng, Connie Huang, Jin Li and Prof Colleen Doyle, National Ageing Research Institute
Dr Manonita Ghosh, Dr Hien Nguyen, Ms Yvonne Huang, Ms Chenchen Li, Ms Cristina Thompson, Mr Nelgyn Tennyson, and Dr Catriona Stevens, Edith Cowan University
Prof Sanetta Du Toit, Ms Kylie Angelou, Ms Zhereen Lam, and Ms Carissa Liu, Edith Cowan University
Prof Loretta Baldassar, Edith Cowan University