Facing a 'tidal wave' of dementia, China is running out of time
Thirty years from now, China's elderly population will vastly outnumber its younger citizens. In a country where assisted-living homes are scarce, and dementia is not widely understood, asks Nathan VanderKlippe, will people pay the price before the government does?
The last time Liu Baoying got lost, she left her apartment on a rainy September morning in 2013. At 11 a.m., her son's phone rang. On the line was Ms. Liu's domestic helper, hired when the elderly woman's memory began to fail.
Ms. Liu had disappeared.
Zhang Feiran, her son, panicked. He sent out messages on social media and issued a call on local radio. He went to the local traffic police command centre in hopes street cameras might have caught something. He came up empty.
Hours later, his phone rang again. His mother had been found, drenched, outside a newspaper office in Qinhuangdao, not far from the coast of the Bohai Sea. People inside had taken pity on her, dressing her in a warm coat and giving her cookies and hot water.
Mr. Zhang picked her up and, from then on, ensured the apartment was locked on the inside. Only a key would let her out again.
"A lot of my friends called to ask what happened," he said. He struggled to answer. His mother was exhibiting textbook symptoms of dementia. But in a country so poorly equipped to handle elderly mental illness that even basis diagnoses remain hard to come by, he had no way to be sure – not then, and not now, after years of symptoms that have grown more severe.
"I still don't know if her illness is Alzheimer's disease or something else. The doctor can't tell me clearly," Mr. Zhang says.
"As we ordinary people say, it's all a question of fate."
In many ways, it's a fate indistinguishable from that of Mr. Zhang's home nation, where a rapidly aging population, and the maladies and societal strains that come with it, stand as a signal challenge.
The cost of elder care threatens to strain government spending around the world. But in no country are more people entering old age faster than China. In coming years, a vast cohort of Chinese people will enter their twilight years and, barring a medical breakthrough, many millions of them will begin to experience dementia.
"The numbers are truly boggling – and the preparation for dealing with the onslaught that is coming is woefully inadequate," says Michael Phillips, a psychiatrist at the Shanghai Jiao Tong University School of Medicine.
Dementia in China presents one of Earth's largest and costliest public-health crises, a slow-moving calamity of human suffering that also portends economic and political danger.
As the fuel for China's industrial engines – cheap labour, hungry consumers, a burgeoning cohort of middle-class workers – slowly dwindles, so too does its ability to propel the global economy. Meanwhile, the cost to the nation of caring for the most vulnerable among the elderly will be staggering. In little more than a decade, some scholars predict, demographics will help drag China's economic growth rate below that of the U.S.
The fast-growing ranks of the elderly are already creating difficult and growing social problems.
This spring, Chinese President Xi Jinping acknowledged "significant deficiencies" that have left the majority of seniors unhappy with their lives in modern-day China. Loneliness is rampant among generations left behind in countrysides emptied of younger people, leading to an epidemic of old-age suicides. He called for the country "to make great efforts" to improve health care and social benefits for its elderly.
Yet the gaps in China's existing social-security system are so large that responsibility for parents with dementia often falls exclusively on the shoulders of their children, like Mr. Zhang, and grandchildren, who struggle to maintain traditions of filial duty when they are outnumbered by their elders.
"We haven't received any help from the government. I haven't heard of any local organizations that can support us," says Mr. Zhang.
He works at a department store, which often schedules meetings for the one day he has off work each week. When he's not at work, he cares for family.
In 2014, he briefly sent his parents to a private seniors home. But it offered no specialized care for dementia patients, and his mother was so confused by the new environment that she could not sleep. A week later, he brought them back home, and hired a live-in domestic helper.
"It's a feeling of extreme helplessness, because there is no other better option," he says. "This disease has completely interrupted everything. I barely have a personal life left."
What dementia does to you
Dementia often targets the cerebral cortex, attacking the outer layer of the brain where decisions are processed and conscious thinking takes place. The cortex shrivels up, damaging areas involved in thinking, planning and remembering.
MILD COGNITIVE IMPAIRMENT
- Cognitive changes are serious enough to be noticed by the individuals experiencing them but not severe enough to interfere with daily life
- Recent mild memory loss
- Repeating questions
- Depression and apathy
- Mood swings
- Mild language problems
- Failing sense of direction
- Persistent memory loss
- Inability to recognize friends and family
- Delusions and aggression
- Coordination problems
- Requiring assistance with daily living
- Inability to process information
- Mood problems and hallucinations
- Inability to care for oneself
- Increased communication difficulties
Source: Senate of Canada
Dementia and China's demographic disaster
Late in the 1970s, as China's leaders prepared for dramatic reform to build a new economic future, they grew fixated on one metric: population and, specifically, how best to tame the country's exploding numbers. Their solution was to enforce a one-child policy. The reasoning was simple: Communist China wanted to get rich, and it is easier to make 10 people wealthier than 100.
The policy introduced countless horrors to China, and its effectiveness has been questioned by scholars who say rising standards of wealth and medical care had already prompted a sharp natural decrease in family sizes.
But at its core, the policy systemized an effort to cap the number of people in the country. Nearly four decades later, China has now nearly reached that goal. Government researchers have said they expect the country to reach the numerical peak by 2029. But census numbers released last week show China's fertility rate in 2015 fell to 1.05, the lowest in the world. It's now possible China's population will crest – and subsequently begin to fall – in the next two or three years.
One group of people, however, will continue to grow for decades to come. Between now and 2030, the new members alone of China's 60-plus club will be equivalent in number to Russia today. China is already, as a whole, older than the U.S. By 2050, if current birth and death rates hold, the average Chinese person will be 56 years old, according to an analysis of the new census data by Fuxian Yi, a scientist in the school of medicine and public health at the University of Wisconsin-Madison. (Canada's current median age is 40.)
Demographic change is both foreseeable and, in relative terms, sufficiently slow-moving that savvy leaders can attempt to adapt. A dramatically older China is nevertheless likely to be one beset with problems, Prof. Yi warns. "In the future, China will have economic problems," he says, mooting the possibility of a financial crisis. China simply "cannot afford" the costs coming its way, he fears.
Take the new number now commanding attention in China: the worker-to-beneficiary ratio, which counts working-age people relative to each person 65 and over. It's a measure that likens workers to locomotives. The fewer they are, the more weight – or, in this case, elderly – each has to pull.
As recently as 2010, China's number was 7.6, roughly double the U.S. figure, a measure of immense economic vitality. But unless China's new two-child policy produces a birth explosion – something that has not happened – its number will fall precipitously in coming years. By 2050, outside some unexpected shift, China will have just 1.7 workers for every person over 65. (If China follows the current trend, Prof. Yi adds, its population will fall from 1.35 billion today to 450 million at the turn of the next century.)
That's a problem for the economy, since a decline in workers will "act as a direct drag on headline economic growth," says Chua Han Teng, senior analyst for Asia country risk and financial markets at BMI Research.
But the effect is magnified in China because change is coming so fast that the country has yet to build up a sufficiently large store of national wealth or construct the vast care system it will take to look after all of its new elderly.
The way Dr. Phillips does the math, by 2050 China "will need six times the number of nursing beds currently in the U.S." Today, it has half as many.
A Canadian appointed to the Order of Canada last year, Dr. Phillips is among China's most prominent mental-health researchers. In 2002, he published the first paper on Chinese suicide rates in an international journal. Lately, though, he has devoted his time to dementia, which affects roughly 10.5 million people in China today. But that number is expected to more than triple by 2050, even though the country currently has virtually "zero" specialized capacity to help, despite the likelihood that task will almost certainly fall to government. "People aren't willing to take care of old, demented people," Dr. Phillips said.
"I look at this and it gives me the willies, as a public-health doctor," he says.
Pain in the countryside, and the gilded other side
China's rich can buy the best possible care, at a monthly cost that exceeds what many make in a year.
But most families struggling with dementia occupy a sprawling social-services desert, one most bereft of help in China's distant countrysides, like the rural Hubei province home where farmer Wu Jinfeng, 52, tends to her bedridden husband. Her children live in cities, leaving her alone to take care of her wheat, her cotton and his advanced dementia. Her days begin at 5 a.m., when she takes her husband to the toilet before cooking him breakfast, feeding him and helping him to lie down before going out to the fields. At noon, she returns to clean his incontinence and eat before returning to work and, later, coming back again to fix dinner. At night, she must wake several times to see if he has lost control of his bowels or bladder.
With no state support for the medicine he needs – China's public health-care system is replete with gaps, including coverage of certain drugs – Ms. Wu relies instead on her two children to send money. Her husband brought in about $2,000 a year. His pills alone now cost nearly $5,000 a year. The financial burden has left her son uncertain he can marry, and her daughter desperate. But it's the best they can manage. An elderly care home would cost even more.
"I desperately wish mercy killing would be allowed for people with this kind of disease," said her daughter, Luo Shan. "It is such torture. And we are so helpless, just waiting for death to come. We look at the way our family suffers, but can do nothing."
It's a familiar tale for Wang Huali, a researcher in the Dementia Care and Research Centre at the Peking University Institute of Mental Health, the top such organization in China.
"We have so many people in need of help, but the service providers are very limited. The gap between the number of patients and the service supply quantity is too big," she said.
Even in senior care facilities, many "have not yet provided proper training to their staff," Dr. Wang said. It was only this year that her institute began dementia training for community doctors and nurses.
Hundreds of kilometres away, in a quiet neighbourhood on the outskirts of Beijing, lies a very different kind of place. Inside an apartment-style building are some of China's most successful people, their minds corroded by illness. A talented editor at a high-profile publishing house now eats rice fed by a nurse's chopsticks. A famous doctor of Chinese medicine walks around with a stuffed toy monkey wrapped around her neck, unable to speak.
Their mental loss is magnified by the extraordinary talent they once possessed.
They are nonetheless among China's most fortunate, housed in a hushed unit dedicated to their care.
The oval floor plan ensures no one gets lost in a back hall. A sitting room is stocked with decades-old brands of Chinese shampoo, to create a sense of comfort for those whose minds live in the past. Nurses trained overseas lead art and dance classes.
Every detail has been honed: furniture without sharp edges, lights that aren't too dazzling, anti-skid PVC floors and windows that reach to the floor to allow more natural light to flood in.
With some of the best care money can buy, it's a picture of dignity in the face of difficulty.
This Qingta facility in southwestern Beijing is the first dementia care ward built by Senior Living L'amore. It is a preview of plans to build far more, with 10 to 20 new senior care locations in the next two years, and 20,000 beds in five years. A small percentage of those will be devoted to dementia care.
"The need is there," says Christy Xu, the director of strategy and investment for the senior living business at Senior Living L'amore's parent company, Sino-Ocean Group.
This is the gilded other side of dementia care in China, where those with the means can buy a rare form of care unavailable to others. They get chefs, therapists – and a pair of Joy Ambassadors tasked with organizing events.
None of it is cheap: about $3,500 (Canadian) per month for a patient with advanced dementia, in a city with an average salary of $1,280.
"I don't think many people can afford this kind of facility," Ms. Xu acknowledges.
But outside it, there are few options. "There aren't very many other places that can take care of seniors with dementia," said Zhang Qingrui, 85, who lives here with his wife, Hou Qingyuan, 83, a former pediatric doctor.
Even with the elite pricing and clientele at Qingta, however, it's a tough business. Rent is expensive and wages have risen high enough that labour costs pose a financial obstacle to building more places like the Qingta location, which opened May, 2014.
The struggles at this place only reinforce the difficulty for China to build a national network of services for the masses unable to afford a gold standard of private care. "The need is there. And government wants more capital investment in this field, because government cannot take care of all of this," Ms. Xu says. But "it's still really hard."
Finding solace, in person and online
Wei He leans over the bed where his mother is lying on her side, so still she looks asleep. "Get up," he urges gently. He wraps his hands around around her wrist. "Play a bit."
Wu Chunhua, 94, grunts.
"You can lie down at night," her son tells her. "Not during the day."
Ms. Wu rolls up, and Mr. Wei leans in close, still holding her hand as he begins to prod her with questions.
"What country was Norman Bethune from?" he asks. "Do you remember?"
"China," she says.
"You've forgotten," he says softly.
Some research suggests an active mind can help slow the onset of dementia, although it's not clear how much that will change its progression. But Mr. Wei is hopeful he can help his mother. If his country won't provide that kind of care, he will himself.
"Where is Canada?" he asks.
"By America," she answers. Mr. Wei smiles.
"Let's count in English," he continues. "One, two –"
"Three," Ms. Wu replies.
She continues through 10, speaking a foreign language with a clarity that belies the damage that has accrued in her mind. Communication is laboured. She requires constant attention.
Mostly, that comes from her son. He quizzes her every day, asking her basic math questions and singing songs, hoping he can keep the lyrics alive in her memory.
"I think she can feel my love. I often hug her," he says.
Life isn't easy. Mr. Wei, 58, himself has Parkinson's, so his own health is slipping. He has no children of his own, and no one to take care of him. Alone at home with his mother and a domestic helper, whose costs he covers through pension and old age payments, he draws comfort primarily from the Internet.
In online groups, he has found not only a place to exchange information, but somewhere to turn for mutual support from the indignities of dementia, particularly in a culture where traditional respect for the wisdom and civility of age can be difficult to square with the reality of a parent whose faculties are diminishing in unpredictable and sometimes embarrassing ways.
The common Chinese word for dementia, chidai, connotes stupidity and insanity. Those who suffer from the disease are stigmatized. In years past, "we used medicine to sedate them," said Zhao Dan, the memory-care service director at Senior Living L'amore.
Online, though, users talk about parents who beat their children, pour urine on their heads, bite them and pull out their hair. Some family members have killed themselves. Others face punishing medical bills.
Families "need more care," said Chen Weihong, 48, who founded three popular dementia groups on social media site QQ.
For many, the Internet has become a better source for information than the medical system itself. Ms. Chen was working at a hospital when she noticed something wrong with her mother. She consulted doctors and read literature in the medical library. Even after her mother got lost twice, the professionals failed to pinpoint the problem.
"Her dementia symptoms had grown very serious, but doctors still couldn't make a proper diagnosis," said Ms. Chen, whose mother's symptoms first began to appear in 2000. She died in 2011.
One 2004 study found that only a quarter of Chinese patients with dementia who saw a doctor received the proper diagnosis.
"Most doctors do not know how to diagnose dementia – so going there is useless," said Wang Jun, the chair of Alzheimer Disease International in China. And many patients don't see a doctor at all. The same 2004 study found that half of Chinese families considered dementia symptoms a normal part of aging.
Ms. Chen has sought to counter the ignorance. Five years ago, she began inviting doctors and other experts to join the online groups. Patients can ask questions, and book appointments to see professionals in person. Ms. Chen has invited wealthy entrepreneurs, too, hoping some might provide sponsorship, or perhaps even money for families in need. At the same time, she's directing people to resources that exist.
But it hasn't been easy. China's authoritarian leaders have sought to keep her from gaining too much influence, lest she draw more attention to failings in the system. Ms. Chen has been barred from registering an NGO devoted to dementia. Without proper documents, her ability to advocate and arrange public events is limited.
Still, she keeps trying.
"People like us are willing to serve others suffering the same disease our families endured," she says. "What we are doing is lightening the government's burden. All I would like is for the government to consider our own burdens in life. I will continue working on it."
The way forward
Yang Jianhua has the subdued look of a long-time government functionary, with rimless glasses and a striped collar peeking out over a dark sweater under a dark suit.
But put him in front of a crowd of seniors at a local community centre in Beijing, and he transforms into an amped-up professor. He zips through a PowerPoint, drawing on Ronald Reagan and Margaret Thatcher to discuss the basics of memory loss – stopping every once in a while to demand a quick memory test from his audience, before delivering a sobering warning.
"Some families of patients with dementia say living is even worse than death," he says, before offering strategies for keeping minds healthy. Learn a foreign language. Practice calligraphy. Cook. Read the news. Eat well. Try your hand at Peking opera.
When it comes to dementia, "be brave to understand it," he says. "Don't feel shame. Face it up front. Share your experiences. Slow the advance of this disease."
When Mr. Yang began his career, the biggest crisis confronting Chinese leadership had nothing to do with the elderly. Beijing was, instead, most worried about babies. Enforcement and promotion of the one-child policy fell to the National Family Planning Commission, which grew into a sprawling bureaucracy.
It was there that Mr. Yang built a career. He rose to chief of the information, education and communication department, where it was his job to beat the national drum for birth restrictions. He was a leader in a bureaucracy that oversaw horrendous abuses in the name of limiting the country's population – part of the reason its demographics are so skewed today.
Then he had a second child himself, and quit. He moved to the U.S. and studied public health communication at Johns Hopkins University before returning to China, where he is now director of the Huaxia Population and Social Development Research Institute. It's a post that has him delivering propaganda of a very different kind, to counter a problem rooted, in part, in the work of his previous employer.
Now funded by a Chinese lottery, he travels around Beijing to tell the elderly about dementia, one small crowd at a time. Last year, he spoke with 1,800 people. This year he is on track for more. "The purpose of this is teaching people about what Alzheimer's disease is. That's very important," he said.
China's government, too, has made steps toward filling the breach. The country's National Mental Health Work Plan, released last year, recommends major change, including doubling the number of psychiatrists by 2020.
But the plan acknowledges widespread problems. "At present, our country's mental health services resources are truly insufficient and unevenly distributed," it says, pointing to widespread social prejudice against the mentally ill.
And as an editorial in The Lancet noted, the plan came with no budget, raising doubts it can be achieved, particularly given the scale of the need, and the degree to which government support is likely to be required.
Though China has a reputation as a nation of savers, its elderly have set little aside for their futures – of Chinese homes with people aged 55 and above, nearly 80 per cent had only enough of their own money to live for a year, Duquesne University professor Mark Haas wrote in A Geriatric Peace, a 2007 academic article.
"China's leaders will be faced with a difficult choice: allow growing levels of poverty within an exploding elderly population, or provide the resources necessary to avoid this situation," he wrote.
China may find a way forward by adopting creative solutions devised by other governments. Japan, for example, has built community centres that function on a drop-in basis. It's a hybrid model that leaves families responsible for much of the care, while giving them the opportunity to give parents with dementia to caregivers for a few hours to rest or run errands – or even for a few nights so they can take a quick vacation.
Japan has problems, too. It recently announced plans to allow foreign workers in to understaffed elderly care homes.
The country's flexible approach nonetheless remains one "I think can be copied in China," said Chen Hongtu, a psychiatric researcher at Harvard Medical School who has studied dementia in Asian cultures.
Such systems, though, take time to set in place, and though time is something China lacks, government inaction continues. Karen Eggleston is part of a joint project with the Chinese Center for Disease Control and Prevention to evaluate chronic disease control efforts. "They focus on everything but mental health and dementia," said Prof. Eggleston, who is director of the Asia Health Policy Program at Stanford University. Those issues have been "pushed to the back" because they are tough to solve.
But "China can't keep doing that, or it's going to come back to haunt it in multiple ways," she said.
In some places, though a conversation has begun. Last November, a local government office called to speak with Ms. Chen, the QQ group leader. They wanted to ask her about the needs for families who struggle with dementia and Parkinson's, a disease that afflicted her mother-in-law.
When she went in, she found herself face-to-face with experts and staff at branches of the Chinese Centre for Disease Control and Prevention. They described plans for a two-year pilot project in six Chinese provinces. Its goals include boosting hospital medical care, building a long-term hospital-based care system and blending government and community services.
Ms. Chen was asked to represent patients, and invited to make a half-hour speech before an audience of powerful researchers and officials. She spoke about the need for money, and a lot more of it. She spoke about the lack of knowledge among caregivers, or education for families. She spoke about companies that place a stranglehold on their employees' time, preventing them from properly caring for loved ones.
When she finished, she sat down and watched a senior government leader take the stage to describe a national effort to make care for dementia and Parkinson's into "major national projects."
"We must do it well," the official said. "To anyone who steps out of line, I will fire you."
It suggested to Ms. Chen that the state was preparing to step in.
In the meantime, researchers like Dr. Phillips are racing to test methods for early identification of people who will develop dementia. Figure that out, and suddenly a window opens to test ways to slow, or even prevent, its onset. The work is taking place in China, because nowhere else is it more important.
Dementia "will consume a huge amount of resources – and they haven't even done research on how we are going to provide services for all these people," Dr. Phillips said.
"But it's a tidal wave that's coming."
For now, though, the families already caught up in the waters can do little but hope the disease doesn't ravage their own lives, too.
At his mother's house, Mr. Zhang seeks solace in old photos of happier times. He flips through the black and white images, reminded of the artistic skill his mother possessed, once painting a particularly vivid portrait of Lenin. His mother watches television in the background. Now, she sometimes puts both socks on one foot. "I bought a book, and learned that the next phase will bring difficulty swallowing and even walking," Mr. Zhang says.
His mother can still recognize many Chinese characters, and even hums along to Communist revolutionary songs when they come on TV, embers of memory sparking back to life. Mr. Zhang hopes those continue to last – but is determined to do what he can to give his mother dignity when even they begin to vanish.
"The current science says this disease is irreversible," he adds. "What I can do is my utmost to provide her the best in life."
With reporting by Yu Mei
Nathan VanderKlippe is the Asia correspondent for The Globe and Mail.
Follow him on Twitter: @nvanderklippe
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