Chinese doctors seek more compassionate name for dementia


BEIJING — The Chinese name diseases based on symptoms, so diabetes is known as “sugary pee,” while a dyslexic “has trouble reading.” Dementia derives from two Chinese characters meaning “insane” and “idiotic.”

Now Chinese psychiatrists, worried that many people with dementia are so self- conscious they won’t seek treatment, are calling for professionals and patients to adopt a new term.

“The Chinese name implies that patients are both mentally ill and severely stupid, so the stigma is doubled,” said Helen Chiu, a professor of clinical psychiatry at the Chinese University of Hong Kong and the lead author of an editorial in the International Psychogeriatrics journal. The eight doctors who signed the piece advocating a change are from China, Japan, South Korea, Taiwan, Singapore and Switzerland.

It isn’t an issue only in Chinese-speaking populations, because the Korean and Japanese languages rely on many Chinese characters. And many Asian medical names were adapted from those used centuries ago by Chinese practitioners who called illnesses after symptoms or causes, according to Jaung-Geng Lin, a professor of Chinese medicine at China Medical University in Taichung, Taiwan.

“That was the most direct and easily understood way,” said Lin, chief editor on a guide comparing Western and Chinese medical terms. “At the time there wasn’t any consideration about the sensitivity.”

Diabetes became known as “sugary pee disease” after doctors noticed ants around patients’ urine, Lin said. In his glossary, constipation is “has difficulty defecating,” incontinence translates to “loss of excrement control” and tuberculosis is an “infection from corpses” — apparently because mortuary workers and others who handle dead bodies run a risk of catching TB from an infected person’s remains.

A legendary Han Dynasty physician named Hua Tuo gave the first formal Chinese name to dementia, according to a report by researchers from the Chinese PLA General Hospital and the University of Chinese Medicine in Beijing. Then, in the 16th Century, Ming Dynasty doctor Zhang Jingyue attributed the ailment to the misdirection of bodily energy flow, or “qi,” they wrote in the Neurobiology of Aging journal.

An estimated 44.4 million people suffer from dementia worldwide, and that’s expected to triple by 2050 with 71 percent of cases in developing countries, according to the London-based nonprofit Alzheimer’s Disease International.

In aging China, Alzheimer’s is the most common form of dementia. Its prevalence may balloon as industrialization boosts known risk factors, from pollution to diabetes.

While each country is coming up with its own new name for dementia, most are leaning toward variations of the technical phrase “cognitive disorder,” in line with a U.S. move to adopt the term “major neurocognitive disorder.” Dementia has negative connotations even in English, members of an American Psychiatric Association work group wrote in 2012.

There have been efforts in Asia over the years to rename the disease using less pejorative Chinese characters. Doctors and dementia patients’ groups in Taiwan started in 1998 to try to persuade people to use a word meaning “loss of wisdom,” the authors wrote in the journal. The public and media now seldom use the old term, they wrote.

Japan’s government in 2004 backed a publicity campaign to encourage people to avoid the commonly used word for dementia, “chiho,” which incorporates the Chinese characters and means “disease of cognition associated with idiocy,” and to instead use “Ninchi-Sho,” which translates to “cognition disorder.” Afterward, more dementia patients began talking about their experiences in public, suggesting improvements in public perception of the illness, according to a 2011 report.

In China, the state-owned television network made a similar effort in 2012, asking viewers to vote for a new designation for the condition. Of the 1.2 million who participated, 70 percent preferred “brain degenerative disorder.” The network, along with newspapers and Alzheimer’s patient groups, publicized the results to encourage its use.

But professionals didn’t adopt the term and the momentum dwindled, said Yu Xin, a doctor at Peking University’s Institute of Mental Health who helped conceive the campaign.

“It’s always complicated in China because responsibility for dementia falls under many groups, such as the Neurological Society and the Gerontological Society, and these associations all need to come to a consensus on the right name,” said Yu, who is president of the Chinese Society of Psychiatry.

The authority for approving and issuing medical words is the China National Committee for Terms in Sciences and Technologies. In 1995, the State Council-empowered committee established the phonetic transcription of Alzheimer’s as the official term for the disease, the Xinhua News Agency reported in 2012, citing the health commission’s spokesman Deng Haihua.

The transcription is pronounced “a er zi hai mo bing” in Hanyu Pinyin, which converts Chinese characters into Roman letters. In China, it’s rarely used because it’s just too hard to pronounce and remember, especially for older people, said Yu, the Beijing psychiatrist. “Many elderly patients who come to me can’t get the word out of their mouths, so they call it the ‘ah ah ah disease.’”