Stigma Against Alzheimer’s Delays Early Diagnosis in China
SHANGHAI — Despite the growing awareness of Alzheimer’s in China, only a few people would seek medical attention or a diagnosis during the early stages of the disease that affects an individual’s memory and cognitive functions, according to a new survey.
Nearly 96% of over 20,000 respondents said they were aware of Alzheimer’s, a form of dementia, but only 13% would visit a doctor after developing initial symptoms, especially in rural areas and among those with a lower level of education, the survey said. Many said they put off visiting a doctor as they believed that memory loss was part of the aging process, while others cited busy schedules and long wait times at hospitals.
The findings were released Saturday by the China Association for Alzheimer’s Disease ahead of the World Alzheimer’s Day marked annually on Sept. 21.
Some 15 million people aged 60 and above live with dementia in China, of whom 9.8 million of them suffer from Alzheimer’s, according to the 2021 China Alzheimer’s Report. A 2019 survey among those with Alzheimer’s and their families showed that only 26.9% had visited a doctor, while a mere 21.3% of them received standardized treatment.
Wang Gang, who leads dementia and cognitive disorder research at Shanghai’s Ruijin Hospital, said the deep-rooted belief that people will gradually lose their cognitive abilities with age has discouraged many from seeking diagnosis and treatment early.
“There’s still a stigma around the disease — the diagnosis brings a sense of shame to patients and their families,” he told Sixth Tone, adding that the financial burden of medical costs also discourages many from seeking regular treatment.
According to the 2021 China Alzheimer’s Report, the annual medical costs for all Alzheimer’s patients in the country in 2015 reached $167 billion, or an average of $17,000 for each person. Wang said drugs manufactured by Sino-foreign joint companies are costly and not covered by the public medical insurance scheme, but the government’s centralized purchasing policy has made these drugs more affordable.
“Once diagnosed, patients should stay on medication for a long period of time,” Wang said.
While Alzheimer’s typically affects older people, those in the relatively younger demographic are also being diagnosed with the disease, said Zhao Qianhua, a specialist from the neurology department at Huashan Hospital in Shanghai. She said there should be annual medical checkups and additional cognitive tests for those above 50 and with a family history of Alzheimer’s.
“This group easily gets ignored because they are smaller in number compared with most Alzheimer’s patients above 65,” she told Sixth Tone. “But their diagnosis exerts a much bigger impact on society, as they have jobs and need to support their parents and raise their children.”
Currently, there is no cure for Alzheimer’s disease. The medical and non-medication therapies that are available only work to alleviate symptoms and ensure patients’ conditions develop more slowly.
China’s domestically developed drug to treat Alzheimer’s went on sale in December 2019, though the pharmaceutical company behind it pulled out of a global clinical trial last year citing a lack of funding and disruptions from the pandemic. Last year, the United States also granted conditional approval of an Alzheimer’s drug, though concerns over its benefit and high cost remain.
Chen Huili from Shanghai said she spent 15 years caring for her mother with Alzheimer’s until her death in 2012. She said her mother was diagnosed at the age of 44 and died 15 years after her first doctor visit.
“It’s a heartbreaking and devastating experience,” she told Sixth Tone. “My father and I took care of her 24 hours a day. When my mother was unable to recognize us and yelled, we blamed her for not appreciating our care. I regret that. I wrongly blamed her when she wasn’t able to control her emotions.”
Since her mother’s death, Chen has joined a social group to help families with Alzheimer’s patients. She said it helps those who have lost family members to Alzheimer’s and also who’re still taking care of them.
“The mental support means a lot for those patients’ families,” she said. “There was no help like this 20 years ago when I needed it so much.”
Editor: Bibek Bhandari.
(Header image: An older woman with Alzheimer’s plays with puzzles at a nursing house in Beijing, June 17, 2015. VCG)