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Seeking a compassionate name

Seeking a compassionate name

by BLOOMBERG NEWS

Doctors in China and abroad are calling for medical professionals and patients to adopt a new Chinese-language term for dementia.

According to Bloomberg, people fear that the current expression for the disease is stopping many from seeking treatment.

Chinese disease names are based on descriptions of symptoms — so someone with dyslexia “has trouble reading,” and incontinence translates to “loss of excrement control.”

The two Chinese characters used to signify dementia mean “insane” and “idiotic.”

According to Helen Chiu, a professor of clinical psychology at the University of Hong Kong, patients may resist diagnosis or treatment, not wishing to be labeled both mentally ill and extremely unintelligent. Chiu also fears that since the terms imply very severe stages of dementia, medical professionals may be reluctant to work with patients with the disease, feeling there is not much they can do to help.

Chiu is the head author of a recent editorial published in International Psychogeriatrics, which advocated for a new Chinese-language name for dementia. It was signed by doctors from China, Japan, South Korea, Taiwan, Singapore and Switzerland.

The issue of naming extends beyond China to other countries in Asia, since Japanese and Korean languages use many Chinese characters. Additionally, a number of Asian medical names are based on those created by Chinese doctors centuries ago. Back then, naming diseases based on symptoms was the most straightforward way to identify them.

In China, Alzheimer’s is the most common form of dementia. There are at least 300,000 people living with the disease in Shanghai alone. As the population ages, and industrialization intensifies risk factors such as pollution and diabetes, the numbers are expected to rise quickly. And as they do, curbing stigma and ensuring patients get treatment will become increasingly important.

Outside of Asia, stigma surrounding Alzheimer’s is still an issue, although there are many campaigns now fighting against it. As British doctor Bill Thomas recently wrote in a column for The Guardian, people with dementia are still pegged as victims, and seen as being incapable after their diagnoses.

Thomas points out the importance of campaigns such as the Seattle-based Momentia Movement, which encourages communities to see those with dementia as capable, joyful and purposeful.

“It places the emphasis back on how the person can continue having a fulfilled life, rather than suffering while waiting to die,” he writes. “The top priority must be to change the frame of reference so dementia isn’t seen negatively, and people aren’t subject to terrible stigma as soon as they’re diagnosed.”

Even seemingly simple solutions, such as changing terminology, can help to battle stigma. In 2004, Japan launched a government-backed publicity campaign to stop using a common word for dementia, “chiho,” which contains Chinese characters and translates to “disease of cognition associated with idiocy.” Instead, the campaign suggested people use “Ninchi-Sho,” meaning “cognition disorder.”

According to a 2011 report, after the campaign, more people with dementia started sharing their experiences publicly, which researchers believed suggested that public perception had improved.

Past attempts to change the term for dementia in China have been less successful. In 2012, a state-owned TV network challenged viewers to vote for a new name, and 1.2 million people participated. Of those, 70 percent chose “brain degenerative disorder.” The results were published by the network, along with other media and Alzheimer’s groups, but doctors didn’t use it, and the name never caught on.

In 1995, the China National Committee for Terms in Sciences and Technologies — which is responsible for approving medical terms — chose a phonetic transcription of Alzheimer’s to be the official name for the illness. But it, too, failed to catch on since many find the term, “a er zi hai mo bing,” too hard to pronounce.

Yu Xin, a psychiatrist at Peking University’s Institute of Mental Health told Bloomberg that this was particularly the case with seniors. “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.’”



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