A University of Sydney, Australia-led research team reveals that dementia research in Australia precludes the ethnic and cultural diversity of the Australian population. The result the investigators conclude: those in Australia with culturally and linguistically diverse (CALD) backgrounds receive inequitable dementia care.
Published in the Medical Journal of Australia, the authors included Lee-Fay Low, Associate Professor in Ageing and Health at the University of Sydney conclude what is definitely a factor in America and undoubtedly elsewhere. Those that have less means, that may be different than the majority, that may face a past of discrimination face residual bias in the research and health establishments.
The Research team found that an overwhelming number of clinical trials were not representative of existing diversity in the nation reported MedicalXpress. The following results were reported:
A) Analysis of 15 published dementia clinical trials between 2016 and 2018: 2 studies reported 33.3% and 31.6% of participants were from Non-Australian backgrounds. 3 studies reported that 7.1%, 12.5% and 57% of participants spoke English as a second language. The remaining 10 studies reported no ethnicity data was included; B) 42 of 94 currently registered active studies and 44.7% exclude patients not fluent in English. C) A systematic review of 96 international randomized controlled clinical trials found that of the 39.4% reporting ethnicity, pooled data showed that only 11.4% of participants were non-Caucasian.
Gains in Dementia Research
The researchers noted that Australian dementia research was in fact contributing to international gains in early detection and lifestyle-related risk reductions, via initiatives such as the Australian Imaging, Biomarkers and Lifestyle (AIBL) prospective risk identification study with over 1000 participants called The Maintain Your Brain online dementia risk-reduction trial with a target of 8,500 participants, and the Australian Dementia Network (ADNet) dementia registry and memory clinic network, reports MedicalXpress.
Strategies for more CALD Participation
The authors suggest four strategies to increase CALD participation in dementia research, including 1) prioritize diversity in research 2) fund the costs of translators or interpreters 3) leverage existing datasets to study existing ethnic and cultural differences in dementia and 4) support academic publications to report more on ethnic and cultural-specific analysis when and where appropriate.
Lee-Lay Low, Associate Professor, Ageing and Health, University of Sydney
Call to Action: Interested in learning more about this research? Reach out to Professor Low. TrialSite News also tracks diversity in clinical trials across therapeutic areas.