Friday, Mar 24, 2017, 12:17 PM CST – China

Special Report

Alzheimer’s in China

Mounting Threat

As China’s older demographic swells rapidly, its Alzheimer’s-affected population also booms, yet the general public remains unaware of the disease’s severity and the massive challenges it poses for families and society as a whole

China is home to the world’s largest population of Alzheimer’s patients, with an estimated 5.69 million people affected by the disease, according to 2010 data Photo by IC

Approximately 40 percent of people with Alzheimer’s have wandered from caregivers or gotten lost Photo by IC

Wei Ya was surfing the Internet on a Saturday in the middle of a muggy Shanghai summer when she was suddenly hit by a pungent smell. “Oh, no! Dad must have wet his pants again!”

Rushing out of her bedroom, she saw her father standing helplessly in damp trousers on the now-soiled living room floor.

Changing her father’s dirty clothes and washing his unclean bedsheets have become routine tasks for Wei and her mother over the past five years, ever since her father was diagnosed with Alzheimer’s disease.

“We never expected that someday my father would be diagnosed with Alzheimer’s, a disease so strange to us that in our minds, it would only affect really, really old people that we didn’t know,” Wei wrote on her blog.

Many Chinese people aren’t familiar with the Chinese term for Alzheimer’s; instead they call the disease laonian chidai, or “elderly dementia.” Few know what the disease may look like in its early stages. In most cases, the person with Alzheimer’s doesn’t recognize the illness when symptoms first appear, and neither do his or her family members.

Statistics indicate that in China, more than 90 percent of people with Alzheimer’s in 2014 did not receive a proper diagnosis from a healthcare provider, while Chicago-based nonprofit Alzheimer’s Association found that number to be 55 percent for those in the US. Because of China’s growing aging population, a lack of public awareness and inadequate treatment options for those with Alzheimer’s, the increased prevalence of this disease is poised to create major challenges for the country in the coming years.

Overlooked

Due to the One Child Policy adopted in the late 1970s, China’s population is aging much faster than any other middle-income country.

With more than 200 million people over age 60, China has the world’s largest population of seniors, as well as the largest number of people living with Alzheimer’s.

According to a 2013 report published in The Lancet, the number of cases of all kinds of age-related dementia rose in China from 3.7 million in 1990 to 9.2 million in 2010. The number of people specifically with Alzheimer’s increased from 1.93 million to 5.69 million over that same 20-year period.

In a recent telephone interview with NewsChina, Wang Wei, report co-author and professor at Edith Cowan University in Perth, Australia, told our reporter that most people with Alzheimer’s start to show symptoms at age 75 or older. Previously, people in low- and middle-income countries like China did not typically survive to that age, thus Alzheimer’s was most common in developed countries where the average life expectancy was much higher. With improved medical services and a longer life expectancy, the number of people suffering from Alzheimer’s in China has begun to surge, and now more and more cases of the disease are being diagnosed.

“With advanced medical and educational services, the number of people with Alzheimer’s in Western countries has passed its peak, remained stable or even dwindled,” Wang Wei told our reporter. “But in China, the numbers keep increasing. In the foreseeable future, as China’s older population hits its peak, so will the number of Alzheimer’s patients.”

According to Wang’s estimates, the number of people with Alzheimer’s in China will rise to 8.93 million by 2020. “This is like a time bomb,” he said. “The most terrible situation is the one in which we are not even aware we’re on the edge of explosion.”

This unawareness is accompanied by a general lack of knowledge about the disease. Xiang Nan (a pseudonym), a well-educated woman in Beijing, recently noticed that her 80-year-old mother-in-law started to have difficulty remembering recent events and also showed other early symptoms of Alzheimer’s. Xiang asked other family members about this and they all said they’d noticed it, too. However, none of them thought to arrange for Xiang’s mother-in-law to see a doctor and seek early treatment.

Xiang explained to the reporter the reason behind her inaction: She had heard about Alzheimer’s through various news outlets and knew there was no effective medical treatment for the disease so far, thus her family felt it was hopeless to inquire about medication. She also had not anticipated the financial and emotional difficulties her family may end up facing when her mother-in-law’s disease advances. Xiang’s understanding is very typical among the family members of the millions of Chinese people who suffer from age-related dementia. People generally don’t think of Alzheimer’s as a serious or fatal disease like cancer, although it’s the sixth-leading cause of death in the US, according to the US National Institutes of Health.

“This perspective is very wrong,” said Wang Huali, professor at Peking University’s Institute of Mental Health (IMH). “They do not know that, even though there is no cure at present, an early diagnosis, proper treatment and fastidious care can postpone the development of Alzheimer’s and ease the family’s potential burden.”

Wang added that without active treatment, the condition of someone with Alzheimer’s may decline more rapidly, with symptoms progressing from short-term memory loss to total memory loss, problems with language, disorientation and the inability to maintain personal care developing within three to five years. “The speed of progression may vary if active measures are taken as early as possible,” he said.

Wang Wei shares the same opinion, and he believes the importance of early diagnosis and active treatment should be heavily promoted. The general public also needs better education about prevention; research shows that smoking, lack of exercise, hypertension and diabetes are all risk factors for Alzheimer’s, thus a healthy lifestyle may help stave off the disease. “Scientific researchers and society as a whole often focus on diseases with a high mortality rate, such as cardiovascular disease and cancer, while ignoring Alzheimer’s and other neurological diseases,” Wang said.

Apart from a lack of awareness and education, many Chinese people receive a late diagnosis because of the stigma surrounding the disease. Even well-educated families often regard an Alzheimer’s-affected family member as a skeleton in the closet.

Wang Wei said that as China moves forward, it can refer to the relative success in the prevention and treatment of HIV/AIDS. While there is as yet no outright cure for HIV/AIDS, an increase in public outreach has led to a sharp decline in the number of new infections each year, and a greater number of those affected have a better quality of life due to improved medications. Similarly, education and research about Alzheimer’s should receive the same level of support, Wang says.

Unaware

Shanghai resident Wei Ya’s father went missing in 2012. It was a haunting nightmare that she’ll never forget. “I went to seek help from local police stations and emergency personnel, and I handed out ‘missing person’ flyers,” she told our reporter. “Finally a police officer found him in a gutter at a construction site.”

Loved ones going missing is one of the most worrying possibilities for family members of Alzheimer’s patients. According to an international study published in 2013 by physicians at Shanghai Sixth People’s Hospital, about 40 percent of Alzheimer’s patients worldwide have experienced wandering and getting lost.

Wei Ya and her mother have given her father a special yellow wristband that has been used in China since 2012 as a signal to others that the wearer has Alzheimer’s. But, Wei says, the band is often covered by her father’s sleeve, making it less visible to others. In addition, many people who do see it may not understand its significance because of a lack of public awareness.

Professor Wang Huali, one of the founders of the yellow wristband campaign, explained to our reporter that the very intention of the movement is to raise awareness, similar to the red ribbons worn during World AIDS Day. “Alzheimer’s patients and their family members can all wear it, and if people see yellow wristbands everywhere on World Alzheimer’s Day, within a few years the yellow wristband will be regarded as a warning sign and it will fulfill its goal of helping lost Alzheimer’s patients,” Wang said.

Care

Wei Ya’s father’s condition has deteriorated rapidly since 2012. He lost his ability to take care of himself independently and suffered from severe insomnia and hallucinations. In the space of a few years, Wei Ya and her mother had become ensnared in his daily struggle with the disease. By May 2014, they had no choice but to send him to a nursing home in a Shanghai suburb. 

“Most Alzheimer’s patients end up living in a nursing home… according to some estimates, some 20 percent of Alzheimer’s patients have died at home, while about 80 percent of patients lived at a nursing home for an average of two years before they died,” wrote Dutch journalist Stella Braam in the Chinese translation of her Dutch-language book I Have Alzheimer’s: My Father’s Story. Braam’s father, a psychologist and author, died at age 81, four years after being diagnosed with Alzheimer’s.

While Wei Ya’s father was in the nursing home, she would make the one-hour journey to visit him every two weeks. For the first few months, she was satisfied with conditions in the facility, but a change in management resulted in a decrease in its quality of service.

This past March, Wei’s father caught a cold that soon developed into a pulmonary infection because he didn’t receive proper treatment. When he was sent to a hospital for emergency care, a doctor told Wei and her mother that her father’s lungs were blocked with phlegm because patients with severe Alzheimer’s can forget how to get rid of phlegm by themselves. Caregivers need to use a suction pump to clear out the mucus.

At that time, Wei also found bruises around her father’s ankles. She realized he must have been bound to his bed by nursing home employees when he refused to sleep at night. According to Braam’s research, people in the Netherlands often use this method as well. “Some 70 percent of hospitalized Alzheimer’s patients have been tied up by their caregivers,” she wrote.

After Wei’s father’s situation stabilized, she took him back home. She could not allow her father to stay at that nursing home any longer.

Proper nursing homes that care for Alzheimer’s patients are in short supply in China. Sensing a market opportunity, private investors have recently poured a significant amount of capital into building high-quality facilities. Such institutions are, for the most part, prohibitively expensive for ordinary Chinese families. For example, while the average monthly salary in China is 3,806 yuan (US$612), monthly fees for these nursing homes can surpass 10,000 yuan (US$1,610). That means lower- and middle-class families are stuck; they can’t afford the upscale choices, while the limited number of low-cost, publicly funded nursing homes that accept Alzheimer’s patients are fully booked year-round.

Alzheimer’s can be a substantial financial burden for the whole family, even if the family is caring for the loved one at home. The average monthly cost for an Alzheimer’s patient’s medication exceeds 1,000 yuan (US$161). According to a 2013 report done by Alzheimer’s Disease International (ADI), an international federation of Alzheimer’s associations, the total cost of caring for and treating Alzheimer’s patients globally amounts to 1 percent of the world’s total GDP. 

Families of patients with Alzheimer’s bear more of a financial and emotional burden than family members of people with other diseases, according to a Shanxi Medical University study published in 2012. It showed that having a loved one with Alzheimer’s may affect family members’ daily life to a large extent and concluded that “active prevention and controlled treatment of Alzheimer’s can effectively alleviate both the burden of family and society, in addition to lowering the number of Alzheimer’s patients.”

Support

Indeed, apart from regular medical treatment, proper daily care can effectively slow down the development of the illness. Peking University Health Science Center assistant professor Liu Yu told our reporter that patients with Alzheimer’s show different symptoms during each phase of the disease: mild, moderate and severe. Thus caregivers need to adopt different skills and techniques according to each stage.

In 2000, IMH professor Wang Huali launched a support group for family members of Alzheimer’s patients, arranging for them to gather once a month. Group members exchange their experiences and relate different stories to encourage each other and share advice. According to Wang, the intention of the group event is to lighten the psychological load borne by family members of the patients and to enhance their caregiving skills. In the US, there are numerous similar Alzheimer’s caregivers’ associations to address the needs of families and friends providing long-term care for patients. In China, these kinds of local, nonprofit organizations are very rare.

Cao Guirong, a Beijinger who often visits IMH to ask doctors for advice regarding her Alzheimer’s-affected husband, participates in every support group session. She told our reporter that she has always hoped that someday there will be a community-based nursing home which can provide daytime care for her husband so that she can have a little time for herself. According to Liu Yu, even in the developed world, Alzheimer’s patients are mostly taken care of by their families, even though such community-based care centers are a vital service for long-term caregivers.

Solution and Setbacks

Nearly 44 million people worldwide have Alzheimer’s or another type of dementia, according to the ADI. By 2050, the organization believes that number will have quadrupled.

Many countries are beginning to realize the sheer scale of the challenge presented by the increasing prevalence of Alzheimer’s. According to a study published in the journal Alzheimer’s & Dementia, the global cost of the disease was about US$604 billion in 2010 alone. More and more countries have incorporated the research and prevention of Alzheimer’s into national plans, and are investing more into the development of its medication. In 2011, US President Barack Obama signed the National Alzheimer’s Project Act, making it a national goal to “prevent and effectively treat Alzheimer’s disease by 2025.” The following February, the Obama administration announced a historic US$156 million investment earmarked to tackle the disease. Many European countries and Japan also have national strategies for combatting dementia in place.

Several medications have been approved by the US Food and Drug Administration (FDA) to treat symptoms of Alzheimer’s, such as Aricept (donepezil), Exelon (rivastigmine), and Razadyne (galantamine) for mild to moderate cases and Namenda (memantine) for severe ones. Yet “all existing medications for treating Alzheimer’s can only ease symptoms, and on top of that they may cause serious side effects,” said Shen Yong, director of the Roskamp Institute’s Center for Advanced Therapeutic Strategies for Brain Disorders and professor at the University of Science and Technology of China.

Professor Zhong Chunjiu of Fudan University’s Institute of Brain Science said that no new medications for the disease have been approved by the FDA since 2003, despite the efforts dedicated to Alzheimer’s research. In recent years, a few once-promising medications were declared failures during the third phase of their clinical trials. “Normally, the R&D process for one new medication requires over 10 years and costs at least US$10 billion,” Zhong said. According to a 2012 report published by Pharmaceutical Research and Manufacturers of America, from 1998 to 2011, 101 attempts to create drugs for the treatment of Alzheimer’s were unsuccessful. “In that time three new medicines have been approved to treat the symptoms of Alzheimer’s disease; for every research project that succeeded, [about] 34 failed to yield a new drug,” the report said. Due to the high cost of developing Alzheimer’s-related drugs and the low rate of approval, many of the world’s largest pharmaceutical companies have pulled back investments in this area.

Shen Yong has personally encountered setbacks while researching Alzheimer’s medications. One project he once participated in lost over US$100 million. Yet he remains passionate and active in this field. In his words, “as a medical scientist, the ultimate goal is to free patients from suffering.” Shen and his team have found that using chronic thalidomide (a substance which has been found to hinder tumor growth) may be an alternative approach for Alzheimer’s prevention and therapy. “Presently, we are experimenting with the drug’s chemical structure so as to reduce its side effects,” Shen told our reporter. “The innovated medicine is in the second phase of clinical trials.”

Globally, scientists’ attempts to develop new Alzheimer’s medications never stop. Despite the setbacks, researchers are constantly making advancements. For example, earlier this year, University of Queensland scientists found that non-invasive ultrasound technology can be used to treat Alzheimer’s and restore memory function.

“China’s scientific research into Alzheimer’s still lags far behind that of other countries,” said Zhong Chunjiu. At the Alzheimer’s Association 2013 International Conference held in Boston, only 30 of the 4,000 participating scientists were from the Chinese mainland. Insiders admitted that the number of Chinese researchers was proportionally small, and current financial support for Alzheimer’s research is limited and inconsistent. Zhong said that a national-level strategy with sufficient government support is key to tackling a health crisis of this magnitude.

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