WHEN mentioning Alzheimer’s disease, or senile dementia, the translated name of the terms are not so friendly. In Chinese, it is literally “old stupid disease.”

Many of us are so accustomed to the term that we never thought it might be inappropriate, negative or offensive to use it for people with dementia, a group of disorders affecting memory and cognition, for which age is the greatest risk factor and there is no known cure.

But 10 teenagers from World Foreign Language Academy, including seven 10th graders and three 11th graders, are trying to change the name to “cognitive disorder,” which they believe is more respectful to patients and their families.

“As young students, we are trying our best to raise public awareness about the problem and eliminate stereotypes about dementia patients to create a friendly environment for them,” said Lu Qingyang, the 10-grade leader of the team called “DemenCIA.”

Lu said she began to pay attention to the disease after her grandfather had a bad fall and fell into a coma in 2015. Doctors said he might have some complications, such as impaired memory and emotional problems.

In order to look after her grandfather, Lu’s mother tried to seek help and got to know a non-profit organization called Jinmei Elderly Care Center, where the mother and daughter began to learn about the disease of dementia.

When the Dementia Friends program, a global movement developed in the UK to change the way people think, act, and talk about dementia, was launched in June last year in Shanghai, Lu was also invited to give a speech to share her personal experience of looking after her grandfather at the launch ceremony.

Via the organizers, she got to know more patients’ families and volunteers and began to think about what she could do to help. It is estimated that China has more than nine million patients with Alzheimer’s.

And last year, when she was trying to attend a competition for high school students called “China Thinks Big,” she decided to pick up this research topic and found nine schoolmates to join her.

Xiao Xiyu, an 11th-grader, actually had won last year’s competition. Xiao decided to work on Lu’s project though he has been busy with studying and preparation for university applications.

“As my parents are doctors and I have decided to work in the public health industry, I think it is a meaningful project,” he said. “It is neglected by the public but actually necessary to make society more friendly for patients of Alzheimer’s disease.”

Last semester, the team members read books about the disease, conducted questionnaires and interviewed doctors, patients’ relatives and strangers on the street to collect their knowledge about the disease and attitudes on changing the name.

They found that the Ministry of Health had confirmed in 2012 that “old stupid disease” was not on its list of officially approved neurologic medical terms and the formal name should be Alzheimer’s disease, but the informal one had been used for nearly 100 years due to its direct description and ease to understand.

Hurtful words

In their survey, though 80 percent of people said they knew of Alzheimer’s disease, only 44 percent had heard of “cognitive disorder.”

Meanwhile, most polled people said they thought dementia would not change their attitudes towards the patients as it was only a kind of disease, but most family members of patients had different feelings.

In their report, the team said they were told by doctors that many patients refused the diagnosis of Alzheimer’s disease due to fear of discrimination.

“When they are diagnosed with the disease, they are tagged as ‘idiots,’” which can add to patients’ sense of shame and fear,” Lu said. “These all made patients sensitive and reduced connections with the outside world.”

But actually, according to doctors, internal and external factors, such as appropriate diet, positive attitudes and stable psychological statues, are helpful in retarding the disease’s development.

“For the patients and relatives, their pressure is not limited to the burden of medical treatment or nursing, but also other people’s attitudes toward the illness, which usually define it as ‘idiocy,’” said Lu. “It always make people feel depressed and unhappy to hear the word.

“Some people seem to feel that people with the disease become foolish or crazy and no longer have any sense of dignity,” she added. “They are not willing to get close to them and feel they are weird. They give up communicating with them ...”

Lu said her grandfather had no Alzheimer’s-related problems, but she still heard one neighbor say he was demented when he could not say the neighbor’s name immediately when they met. This upset Lu and reminded her of the pains of families with real Alzheimer’s patients.

She said many of the public obviously had misunderstanding about Alzheimer’s disease.

In their questionnaire, they described a 65-year-old lady who had been either forgetting to put salt in her food, or was adding it twice. More than 70 percent of the responders concluded that she had “senile idiotic disease.”

“You can see the terms ‘senile’ and ‘idiotic’ are so deeply-rooted in people’s minds that when they see old people and poor memory, they naturally think about the disease,” said Lu.

She pointed out that though the risk of developing Alzheimer’s disease grows with age, aging does not necessarily lead to dementia and other factors can also led to cognitive disorder.

“We want people to know that dementia patients just have a kind of disease that features poor memory,” she said. “They should be treated like other patients and need help from their families and society.”

Their efforts have earned attention of teachers and their schoolmates. The team held an activity last Friday to share three videos about dementia and introduce their research findings.

“I did not realize it was improper and unfair to say the words ‘old stupid disease,’ as it has been used so commonly,” said Yang Yufeng, a 10th grader. “But after their speeches, I think it is disrespectful and not so precise to call it that. Cognitive disorder is better.”

Lin Fanming, a teacher at the school, also said that the team of teenagers had raised a widely neglected problem and deserve public attention.

Lu pointed out that Japan had changed it to cognitive disorder in 2004, but in China, an initiative launched in 2012 by China Central Television had gone nowhere.

“We may not succeed at once, but we may raise public attention and get more people to join us,” she said. “It is the right thing and we will insist on it.”

The team said they would seek help from political advisers and lawmakers in their next step to push the issue forward.