New research from Chinese Studies PhD student, Zihan He, has resulted in a new Chinese-language term for the word ‘dementia’ in Australia – one that reduces stigma and shame for Chinese speakers.

The new Chinese term for dementia - “cognitive impairment syndrome” (认知障碍症) – has been taken up by Dementia Australia and is hoped to be internationally recognised by Chinese speakers around the world.

The updated term in Australia replaces the outdated and stigmatising term “dummy disease” (痴呆症) which literally translates as “idiocy” or “stupidity”. It also replaces the medically inaccurate term “brain degeneration syndrome” (脑退化症) which covers a wider range of health conditions than dementia.

The new term “cognitive impairment syndrome” (认知障碍症) offers a more neutral, scientifically accurate alternative that is expected to be adopted internationally.

“The term for dementia in Chinese translates to ‘stupidity,’ which is incredibly hurtful,” Zihan explained. “Some Chinese families refuse to seek medical help because the terminology is so stigmatising.”

“I hope the new term really makes a difference.”

Zihan, 28, is an international student from Mainland China. His motivation for the research is personal. A close relative showed signs of dementia but didn’t get the treatment they needed due to the stigma around the language. Zihan wants to make a difference for other families.

“The stigma around dementia has been present in Chinese culture for a long time,” Zihan said. “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,” he said.

“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 the new translations can help destigmatise diseases in the community.”

Zihan’s research is part of the Facing Dementia Together program, led by the University of Sydney in collaboration with partner institutions.

Under the supervision of Professor Christine Ji, School of Languages and Cultures, and Professor Lee-Fay Low, Brain and Mind Centre, Faculty of Medicine and Health, Zihan developed a Culturally Appropriate and Linguistically Understandable (CALU) translation model through extensive community consultation.

As part of the research, Zihan interviewed 21 Chinese-speaking dementia experts around the world asking them to evaluate the scientific accuracy and cultural properties of five existing terms used across Mainland China, Hong Kong, Taiwan, Malaysia and Singapore.

“Thirteen experts preferred the term used in Hong Kong – ‘cognitive impairment syndrome’ – which became the foundation for our recommendation.”

This preferred term for dementia – “cognitive impairment syndrome” (认知障碍症) – has been adopted by Dementia Australia, the national peak body supporting people living with dementia, their families and carers, for use when engaging with Chinese communities.

Professor Lee-Fay Low said: “Language shapes how we understand and respond to health conditions. Zihan’s work is a powerful example of how culturally sensitive terminology may help reduce stigma and encourage help-seeking. By replacing a term that evokes shame with one that reflects scientific understanding, we’re promoting health literacy Chinese-speaking communities.”

Dementia Australia Executive Director Services, Advocacy and Research, Dr Kaele Stokes, said the decision is an important step in better connecting with and supporting Australia’s Chinese communities. There are 980,555 speakers of Mandarin and Cantonese in Australia - or 4 percent of the population.

“Adopting this preferred term is a reflection of our commitment to ensuring our services are culturally informed, respectful and responsive to the communities we support,” Dr Stokes said.

“We are listening to and learning from multicultural communities, and reviewing our services and resources to ensure our approach will be culturally aware and attuned to the nuances that matter most to them.

“We are also working to assess specific needs of Chinese communities so that our support, information and advocacy are as relevant, accessible and effective as possible.”

Zihan’s interdisciplinary PhD combines language and health studies, building on his background in commerce and translation. Originally from Mainland China, he first visited Australia in 2012 as a high school student and later completed a master’s in translation before joining the University of Sydney.

“My supervisors encouraged me to explore how language impacts health communication, especially for multicultural communities,” he says. “This research isn’t just about changing a term, it’s about reducing stigma and improving healthcare access.”

Zihan’s contributions have earned him a nomination for the 2025 NSW International Student of the Year, recognising his role in fostering community connection and engagement across New South Wales.

His project has also been instrumental in the NHMRC-funded initiative:  Facing Dementia Together, a community-based participatory approach to decreasing dementia stigma and increasing help-seeking, co-led by Professor Lee-Fay Low, Associate Professor Lyn Phillipson and Professor Christine Ji. One of the project’s responsibilities is to design a multicultural dementia information translation protocol in Chinese, Arabic and Vietnamese.

From a scientific perspective, dementia is not a mental health illness, but a health condition, because it’s caused by brain issues and more likely a group of “diseases of the nervous system”.

“My ultimate goal is to show that language matters,” Zihan says. “By using more inclusive, culturally sensitive terms, we can help people feel more comfortable seeking help and reduce the stigma surrounding dementia.”