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2022-11-18 09:49:30

SHANGHAI — As Qian leaves home for work each morning, he always makes a point of greeting the security guards standing at the gate of his apartment complex in central Shanghai. 

The 45-year-old knows that he needs to stay in the guards’ good graces. Without their help, it would be impossible for him to continue holding down a job — and supporting his aging parents, who live in the same apartment.

Qian’s mother was diagnosed with Alzheimer’s disease five years ago, and she now needs round-the-clock care. His father does the best he can, but he’s also in his 70s and is becoming increasingly frail.

Just keeping Qian’s mother safe is an enormous challenge. She often becomes distressed and tries to leave the complex, as she no longer recognizes it as her home. One time, she went missing for two days. Police eventually found her wandering a street 50 kilometers away.

You can’t imagine what the life of a family with an Alzheimer’s patient is like. I feel like I’m often on the verge of collapse.

The guards are sympathetic, and have managed to prevent Qian’s mother from escaping again. But Qian wishes his family could access professional care. The stress of working full-time while trying to take care of his parents is almost unbearable, he says.

“You can’t imagine what the life of a family with an Alzheimer’s patient is like,” says Qian, who gave only his surname for privacy reasons. “I feel like I’m often on the verge of collapse.”

As China’s population rapidly ages, tens of millions of families are confronting the life-altering challenge of caring for relatives with Alzheimer’s disease — often with little or no outside help.

China’s elderly population is projected to grow by more than 100 million over the next two decades, and that’s leading to an explosion in dementia cases. There are currently an estimated 10 million Alzheimer’s patients in China; by 2050, this figure is predicted to surpass 40 million.

Chinese authorities are investing in expanding local elderly care systems, but they’re struggling to keep up with the sheer scale of the demographic changes taking place. That means the families of Alzheimer’s patients are often on their own.

Without access to professional care services, people like Qian have to shoulder a punishing burden. Many have to give up work to take care of their elderly relatives full time. They often struggle financially, and see their own mental and physical health deteriorate.

With millions more families set to be affected by Alzheimer’s over the coming decades, the lack of care resources threatens to develop into a social crisis. It’s still unclear how China can adapt to this new reality.

“The investment of social resources into caring for this group will be huge — it will be like an abyss,” says Peng Xizhe, dean of Fudan University’s Institute on Ageing. “The issue will get increasingly serious. However, so far we haven’t got a mature plan.”

Elderly people play with educational toys at a nursing home for people diagnosed with Alzheimer’s disease, Beijing, 2015. Feng Li/VCG

Elderly people play with educational toys at a nursing home for people diagnosed with Alzheimer’s disease, Beijing, 2015. Feng Li/VCG

No safety net

In Qian’s home city of Shanghai, the strain population aging is putting on care services is already visible. 

The metropolis of 26 million people is one of China’s largest and wealthiest cities. It also has the most elderly residents. More than one-third of Shanghai’s registered population is aged over 60.

Based on national incidence rates, Shanghai is likely already home to more than 200,000 people with Alzheimer’s disease. If current trends continue, this will rise to around 1 million by 2050.   

The local government is trying to get prepared. It has built hundreds of community elderly day care centers in recent years. It has also launched a long-term care insurance scheme, which provides subsidies of up to 90% for home-based and nursing home care services.

But the system is massively oversubscribed. Though any registered Shanghai resident over 60 can apply for the subsidies, places are limited. By mid-2020, nearly 400,000 people had used the scheme — a small fraction of Shanghai’s senior population.

Applications by Alzheimer’s patients are rarely approved, Qian says. The system was originally designed to provide support to elderly residents with severe physical disabilities or terminal illnesses. But people with dementia usually don’t fit this model.

“The program started to include Alzheimer’s patients only in the past two years,” says Peng. “Although they’re now included, the care provided isn’t tailored for Alzheimer’s patients. It’s just basic, everyday care.”

Wang, a 62-year-old who lives in Shanghai’s eastern suburbs, is one of the few Alzheimer’s patients who has been granted access to the long-term care scheme. A maid now comes to her house for an hour a day, five days per week, to help clean the apartment, prepare meals, and bathe Wang.

For Wang’s husband, who acts as her full-time caregiver, the visits have been useful. But the family is still struggling to cope — and even just arranging these few hours of help has been exhausting. Several maids have quit, as they lacked experience dealing with Alzheimer’s patients and couldn’t handle Wang’s behavior.

Families of Alzheimer’s patients need to breathe. They’re looking after sick patients 24/7.

“The previous four maids all left after Wang yelled at them,” says Chen Huili, a friend of the family. “She yelled because she was so scared of strangers. But they didn’t understand. They described her as a monster and warned other maids about the danger of taking this job.”

Chen, 39, lost her own mother to Alzheimer’s disease a decade ago, and she now often volunteers to take care of Wang. She knows how badly the family needs support. Wang’s condition has been deteriorating in recent months, and she needs to be watched even more closely than before. For Wang’s husband, simply having an hour off to take a walk can make a huge difference.

“Families of Alzheimer’s patients need to breathe,” says Chen. “They’re looking after sick patients 24/7. They need positive energy, which won’t come if you’re spending all your time caring for a sick person, even if it’s your loved one.”

Wang’s daughter has seen her life turned upside down by her mother’s diagnosis. As an only child, she has had to take sole responsibility for supporting her parents financially. Now 35, she works long hours at an advertising company, and has never married. The years of stress have worn her down.

“I don’t want to go back home unless I have to — the atmosphere is so depressing,” she says, asking to remain anonymous for privacy reasons. “A trip or alcohol are the ways I relax.”

An elderly woman holds a doll at a nursing home for people diagnosed with Alzheimer’s disease, Beijing, 2015. Feng Li/VCG

An elderly woman holds a doll at a nursing home for people diagnosed with Alzheimer’s disease, Beijing, 2015. Feng Li/VCG

A lonely struggle

Qian’s family receives even less support. Like most Alzheimer’s patients in Shanghai, his mother isn’t covered by the government’s long-term care scheme. And the family can’t afford to hire a maid themselves, meaning Qian and his elderly father are the woman’s sole caregivers.

In the middle stage of the disease, Qian’s mother can still walk, brush her teeth, and bathe herself. But this can be a double-edged sword, Qian says.

“It’s a huge burden for families to look after Alzheimer’s patients in the beginning or middle stages of the disease, because although the patients are losing cognitive awareness, they have physical strength,” says Qian. “It’s very stressful making sure they’re safe.”

For Qian, his mother’s disappearance four years ago was a huge wake-up call. At the time, she was in the early stages of Alzheimer’s, and still sometimes went outside alone. But one day, she got on the wrong bus, and wasn’t seen again for days. The trackers Qian had placed in her bag all went dead. Luckily, the police were eventually able to find her.

After that incident, Qian quit his job at a state-owned company to devote himself to looking after his parents. He only went back to work a year ago, once his mother’s condition had deteriorated to the point where Qian felt she was unlikely to escape the apartment complex.

“I want to be with her as much as I can, and to make sure she leads a happy and full life for her remaining years,” Qian says. “I’m lucky I have never married. If I had my own wife and child, I don’t know how I could have struck a balance.”

A man holds the hand of his wife, who has Alzheimer’s disease, Shanghai, 2019. Niu Jing/VCG

A man holds the hand of his wife, who has Alzheimer’s disease, Shanghai, 2019. Niu Jing/VCG

China’s “zero-COVID” policies have actually made it easier for the family to keep Qian’s mother safe. Their apartment complex has locked every entrance to the compound except one, meaning she’s unlikely to slip past the guards unnoticed. 

“It’s quite ironic, but that’s how we’ve benefited from the strict pandemic-control measures,” Qian says.

However, Shanghai’s citywide lockdown earlier this year did Qian’s mother significant harm. After the lockdown was lifted, Qian took her to a local supermarket, and found she was no longer able to take the escalator.

It’s quite ironic, but we’ve benefited from the strict pandemic-control measures.

“Everything was strange to her,” Qian recalls. “She didn’t dare to try it. It’s sad because for many Alzheimer’s patients, once a skill is lost, they may never acquire it again … We’re not the only ones to experience this, many other families have similar complaints.”

Now that Qian is back at work, the financial pressure on the family has eased somewhat. Before, the three of them were surviving just on Qian’s parents’ pension payments, which came to a little over 10,000 yuan ($1,400) per month. 

But it has added to the pressure on Qian’s father, who is now looking after his wife all day by himself. He is struggling to manage: he suffers from several chronic diseases himself.

Qian has been looking for community day care centers that will accept his mother, so that his father can have some time to rest. So far, this search has led nowhere.

“Out of safety concerns, day care centers for seniors need to assess applicants’ mental status — whether they’ll pose a danger to others,” Qian says. “Alzheimer’s patients are unavoidably labeled a high-risk group. I understand their decision … I just hope the day when the government recognizes the urgent needs of families with Alzheimer’s patients can arrive soon.”

A few Chinese elderly day care centers have trialed accepting Alzheimer’s patients during the past two years, Peng says, but most facilities don’t currently have the resources to do so.

“This imposes many challenges on nursing homes and day care centers,” says Peng. “They need new facilities and more professional staff — you have to make sure they don’t sneak out, or hurt themselves or others. It’s not just about money, but also human resources.”

Unable to access government assistance, Qian has tried looking for a maid. But there is a massive shortage of domestic workers in Shanghai, and the fees are simply too high for him to afford — especially after years out of work.

“Most are asking for no less than 10,000 yuan a month,” he says. “That’s unrealistic for my family.”

Qian is trying to stay positive. But he admits that he often feels terrified about the future. He knows that as time goes on, things are only likely to get harder.

“How can I afford the nursing home fees if both my elderly parents need round-the-clock care?” he says. “What if my father passes away first, and I need to look after my mother on my own? The mental stress is immense.”

Editor: Dominic Morgan.

(Header image: A patient diagnosed with Alzheimer’s disease looks through the window at a hospital in Hangzhou, Zhejiang province, 2020. Chen Zhongqiu/VCG)