Destigmatising dementia with culturally informed translations

Chinese Studies PhD candidate Zihan He is working to provide a culturally appropriate and linguistically understandable (CALU) translation model to educational resources for people affected by dementia – tackling challenges that arise in cultural and linguistic translation that are specific to dementia-related information.

Through community-based participation to decrease the stigma around dementia, Zihan’s PhD research contributes to the Face Dementia Chinese language campaign. The program is part of projects funded by the National Health and Medical Research Council (NHMRC) and Medical Research Future Fund (MRFF) to evaluate primary care and help-seeking programs to improve dementia diagnosis and early treatment among Chinese communities in Australia.

Along with supervisors Associate Professor Christine Ji of Chinese Studies, who leads the Language and Knowledge Translation Lab, and Director of the Sydney Dementia Network Professor Lee-Fay Low, Zihan brings his research interests in public health translation, machine translation and discourse analysis to local community health activities as he seeks to enhance the cultural adaptability and understandability of dementia resources.

What motivated you to pursue your PhD research? Why is there a need to alter translated words in dementia resources?

The stigma around dementia has been present in Chinese culture for a long time. Many Chinese people are hesitant to mention its Chinese term, '痴呆症 (Simplified Chinese) / 癡呆症 (Traditional Chinese)', 'chī dāi zhèng' in Mandarin or 'ci ngoi zing' in Cantonese, which means 'dummy disease'. While Chinese Australians have access to Chinese dementia-related educational material, a lot of its language has literal translations. I’ve witnessed many Chinese-speaking people in Australia delay their first appointment with doctors because they did not want to face their health situations. I hope that CALU translations can help destigmatise diseases in the community.

What has been the most exciting finding in your PhD research so far?

After a two-year study with my supervisors, I realised that the low understandability of literal translations remained persistent. For example, one of the symptoms of dementia is 'forgetting recent events', and its literal translation is  '忘记近期的事件 (Simplified Chinese) / 忘記近期的事件 (Traditional Chinese)', 'wàng jì jìn qí de shì jiàn' (Mandarin) or 'mong gei gan kei dik si gin' (Cantonese). This expression is not very idiomatic to the Chinese people. I adopted '脑退化' (Simplified Chinese), 'nǎo tuì huà' (Mandarin) or 'nou teoi faa' (Cantonese) – 'brain degeneration' – as the CALU translation of 'dementia'. I was initially concerned that the new translation would not be accepted, but I have found that all participating Chinese Australians at our program's in-person educational activities accepted the translation and used the new term. This suggests that adopting CALU translation in educational materials can help progress people's mindsets towards dementia.

How has your research engaged with the wider community in Australia?

Currently, my CALU translation has been published on the website for Face Dementia in Simplified Chinese. It provides free online and in-person resources to help people in the community start conversations with their families about dementia-related concerns and ask their GP for an assessment. As the project progresses, more Chinese Australians will benefit from CALU translations which can be applied to other languages and public health materials in the future – benefiting more people of culturally and linguistically diverse backgrounds.

Your research is at the intersection of the humanities and health. What has it been like to work on a cross-faculty research project with scholars in STEM?

Many people assume that the liberal arts and social sciences are not as useful to society as science, technology, engineering and mathematics (STEM). I think one of the major reasons is that we rarely have a way to visualise our studies for the community at large. In my experience,  STEM researchers are keen to read the latest articles on public health translation and have invited many translation experts from academia and the industry to input on my CALU translation model. STEM scholars are always looking to translate research into visible and practical presentations.

What has been the most enjoyable part of your PhD journey so far?

Researching at the School of Languages and Cultures has brought numerous opportunities to connect with top researchers and students. A highlight has been the school’s Research Day for Higher Degree by Research (HDR) students, whereby HDR students of diverse interests gather to present our research and findings. Working with Professor Lee-Fay Low and her team has been great, and I must express my sincere thanks to Associate Professor Christine Ji, whose academic support has enabled me to work with such a great research team to develop highly innovative lines of research in health information translation and community health education.

Face Dementia is funded by the Australian Government’s Medical Research Future Fund.

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