The People Teaching China About Alzheimer's Want You to Ask This Too: "If I Get This Disease, Who Will Take Care of Me?"

How hard is it to turn around a society's indifference to a disease that is everywhere? And what should actually be done?

In 2011, Shuijing, who calls herself a "professional audience member," spent 80 minutes at a play laughing, then crying, then laughing, then crying again, until she had used up every tissue she brought.

Shuijing is a curator. "In a year, counting shows at home and abroad, the total doesn't come in under 100," she says. She is used to the joys and griefs that play out onstage, but the Spanish mime piece André and Dorine undid her.

The wordless play — three actors rotating through 12 masks — gives up both dialogue and facial expression to tell the audience the life story of Dorine, a cellist with Alzheimer's disease, and her husband André, a writer.

In 2012 she began touring China with the Spanish company, which has now come here eight times. This year's run at Xintiandi in Shanghai was different: after the mime performance came a panel discussion, with relatives of Alzheimer's patients, staff from charities working on the disease, and doctors.

These are, in fact, the people who do most of the work of explaining Alzheimer's in China. Loosely organized, they want the public to understand the disease correctly, to take prevention seriously, and to get more patients to a doctor.

It has turned out to be strangely hard.

Zhou Yang, a freelance photographer, began photographing her grandmother, who had Alzheimer's, in 2011.

Director Zhao Qing and producer Feng Du made the documentary Please Remember Me, which has followed, since 2012, the last years of their granduncle Shufeng and his wife Weifang, their great-aunt, who has Alzheimer's.

Li Xia, deputy director of the Alzheimer's Disease Diagnosis and Treatment Center at Shanghai Jiao Tong University, is Weifang's doctor and appears in the film.

All of them were invited to speak on the panel after the mime performance. (Zhao Qing and Feng Du could not attend; their publicist, Qin Yiping, went in their place.) In the audience were members of Jian'ai Charity, an NGO in the same circle that works on public education and prevention around dementia — Alzheimer's accounts for about 60 percent of dementia cases.

Shuijing hopes André and Dorine can be her way into this circle. "I found that it connects to so many people's lives. My own uncle has Alzheimer's, and over the past couple of years my mother has started aging very fast — I've noticed some of the symptoms coming on slowly. We've prepared ourselves for it; we don't want to face it, but we probably will have to... Sometimes I think about what I'll be like at that age. If I get this disease too, who will take care of me?"

I

For a lot of people, the transliterated name "Alzheimer's" is a mouthful and a stranger. They are more used to the disease's other name, laonian chidai, usually translated as "senile dementia" — though the Chinese word chidai means something closer to "imbecility." To Zhou Yang and Feng Du, both relatives of patients, that common name carries real contempt: "it even comes with a built-in excuse — because he's an imbecile, I can do this, or I don't have to do that."

Li Xia is the person in this circle who sees Alzheimer's patients most often, and the one who started this work earliest.

Over the past decade and more, on top of seeing patients, running the ward, doing research and training doctors at the center, she has put 20 percent of her time into "promoting" Alzheimer's — because "she knows that society doesn't understand this disease."

Among the many patients' relatives Li Xia has met while volunteering at free clinics, most do nothing. Faced with an old person's forgetfulness and confusion, they make the diagnosis themselves: "Look, she's just senile." Then they add: "Does this even need treating?!"

Out in the neighborhoods, Jian'ai Charity's members have met far too many people who don't consider dementia a disease at all. "They think it's normal aging. They'll say, she's over 80, of course she's like this, just leave her alone."

Alzheimer's also isn't like diabetes, where a pill produces an effect you can see. Sometimes Li Xia gets an answer she can only laugh at — "Even President Reagan couldn't be cured of this. Why bother seeing a doctor?"

Li Xia jokes that people don't only look down on "senile dementia" patients; sometimes the psychiatrists treating them get looked down on as well. She says she is "very used to" all of it by now. What actually troubles her is that it has slowed more than a decade of advocacy to a crawl — "there's never really been a breakthrough."

And the forgetfulness so many people consider perfectly normal is only the beginning of the disease.

In her grandmother's last three years, Zhou Yang watched her go from failing to hold on to events and the names of ordinary things, to forgetting her granddaughter's birthday, to no longer recognizing her family's faces, until her body's skills failed too, one after another.

In the year or two before she died she stopped being able to walk. "Even with two people holding her up, she didn't know how to move her legs." Then came incontinence, then the inability to feed herself, and finally the loss of chewing. "In her last year she could only take liquid food. We put every meal through a blender and fed her that."

Neither Zhou Yang nor her mother had expected this. Early on they simply assumed that "old people's memory naturally declines," that this ought to count as "normal decline."

The further the disease went, the more this "normal" decline — so like ordinary aging — showed its abnormal side.

In Zhao Qing's footage, Weifang once takes a shoe cover for a headpiece and wears it on her head while cleaning. She loses her hairpins more and more easily; once, unable to find one, she reached into the toilet to fish it out of the water. Dorine in the play is muddled in the same way: she pulls socks onto her hands, or puts her clothes on inside out, and no number of corrections from André makes any difference.

To Li Xia, none of this is a serious problem. Alzheimer's patients have "a 50 or 60 percent chance of doing all kinds of strange things" — "shouting, knocking on the neighbor's door in the middle of the night, burning a pot dry, or being about to burn a pot and refusing to listen, or wanting to fire the caregiver, suspecting for no reason that the caregiver is a bad person."

The endless incidents once led many relatives to treat these old people as "mentally ill." "At the very least, a doctor will understand clearly that this isn't mental illness — that the person definitely needs some special help," Li Xia says.

II

Alzheimer's disease (AD) belongs to neurology; the damage happens in the brain. Next to a healthy brain, an Alzheimer's patient's brain shows diffuse cortical atrophy, widened sulci, enlarged ventricles and a large loss of neurons.

Through the whole course of the disease, the hippocampus — which handles memory and spatial orientation — is damaged first, and shrinks badly. That makes it easy to see why patients in the early stages so often forget things and can't find their way home.

In 1906 the German psychiatrist and pathologist Alois Alzheimer published the research he had begun in 1901 on a 51-year-old woman, recording her suspicion of others, her failing memory, her deteriorating language, her inability to find her way home. Four and a half years after she was admitted, she died. An autopsy found senile plaques across her cerebral cortex and neurofibrillary degeneration inside her neurons. The disease took Alois Alzheimer's surname.

More than a century later, apart from the 1 to 5 percent of cases that can be traced to inheritance, medical science still hasn't found the real cause of the great majority of sporadic cases.

This disease, tied so closely to human aging, is like aging and death themselves: once it begins, it cannot be reversed. And although the big drug companies pour money every year into preventive drugs, progress has never come easily.

Even so, the earlier the intervention, the better the chance of stretching out the years of decent life. "Early on you have a better chance of staying in a state where you've lost a little memory but everything else works normally," Li Xia explained in an interview. "There aren't many drugs available right now, but drugs plus other, non-drug interventions can still keep someone at a good stage longer."

More than 46 million people worldwide have Alzheimer's, and nearly a quarter of them are in China. As the population ages faster, this disease — most common in people over 65 — will reach more and more people over the next few decades. One set of estimates puts the global total at 130 million by 2050.

Life expectancy in China rose above 65 only after 1978. In the four decades since, fast economic growth has kept pushing the number up. People have enjoyed the benefit of longer and longer lives without preparing properly for the by-product.

Feng Du later realized that her own grandmother on her father's side — Zhao Qing's grandmother on her mother's side — had the same troubles late in life as their great-aunt Weifang. "But back in the early 2000s people weren't very aware of this, so nobody paid special attention or took her for treatment in time," Feng Du says. The whole family still regrets it.

Even in 2010, when Zhou Yang's grandmother started showing fairly clear Alzheimer's symptoms, Zhou Yang and her family had no idea how to get her treated. "We didn't know there was a department for it, didn't know what medicine there was. My mother carried the most pressure. The hardest part to accept is that you do all that, and she just forgets you like that. It's very hard to keep going, but you still have to keep going," Zhou Yang said in an interview.

In 2015, Jian'ai Charity began working with several subdistrict offices in Shanghai on a screening and prevention program aimed at people in the community who might have dementia. Even in Shanghai today this counts as "ahead of its time." Using early-screening tools — the clock-drawing test, AD8, MoCA — they found a good number of old people who were "functioning normally in every other way" but whose results showed mild cognitive impairment and a need to see a doctor soon.

Only about a third of them went to a hospital for a fuller, more detailed examination.

Looking back, both Feng Du and Zhou Yang can find symptoms earlier in their great-aunt's and grandmother's lives. But the long-standing belief that old people are naturally forgetful and muddled, together with poor access to information, cut short years of decent life that might otherwise have been extended.

Neither family could provide round-the-clock care, so Zhou Yang's grandmother and Feng Du's great-aunt both ended up in nursing homes. For them that turned out to be luck. "A lot of nursing homes won't take patients like this. Luckily, one in Yangpu District was willing, so we took her there," Zhou Yang recalls.

The winding search for a nursing home is shown only briefly in Zhao Qing and Feng Du's documentary; in fact, before Weifang moved into the home she is in now, they had taken her around more than a dozen of them.

In the course of treating patients, Li Xia noticed something baffling: "after a lot of old patients are admitted, they don't want to be discharged." Eventually she worked out why: "it turns out the nursing homes won't take them." "A lot of them don't have the professional ability to care for these patients. And they think these old people are too much trouble — why would I look after someone with dementia when I could look after a lucid old person? If there's a scene, or the patient wanders off, they carry the risk."

Most of the homes that will take Alzheimer's patients can offer only the most basic care. "The nursing home feeds them three meals, turns them over, washes them, gives them their pills. That's about it," Zhou Yang recalls.

III

"We have to do something." Everyone in this small circle keeps thinking it.

Over the past three or four years, as they have run into more and more people who tell them "my grandparents are the same," that feeling has only deepened under the force of recognition and sympathy.

Feng Du and Zhao Qing came to feel that "the point of making this film isn't just to tell the love story of two old people anymore — it's that we can use it to help more families going through the same thing." After a run of international festivals they decided they "could go one step further," and took the film on the road: nearly 100 public screenings in Shanghai, Beijing, Nanjing and other cities, plus repeated screenings in Shanghai neighborhoods. Li Xia goes along with them to help promote it.

After a screening in a university social work department, students told them that caring for Alzheimer's patients looked like a good direction, and that they might do that work after graduating. At a pharmaceutical plant, many in the audience were scientists developing Alzheimer's drugs. "A lot of them came away inspired, because they'd never actually been close to patients and their families — they were just doing research. The film brought them nearer to patients and families, and let them see how important their work is."

Zhou Yang gathered her photographs into a book called The Long Goodbye. Her grandmother had been a pattern designer at a Shanghai dyeing and printing factory, won many prizes, designed all kinds of patterns. Zhou Yang put those patterns into the book too, along with old photographs of her grandmother and the family, hoping to give her grandmother a larger part in it.

"I think she probably knows we're family, she just can't say it. So when I was editing I'd set a recent photo of her with the family next to an old one of her with the family, to say that," Zhou Yang said in an interview.

She wants more people to see the book, and is still looking for a publisher. "At least let people know what it's like for the family, what this disease actually is. I think that kind of basic education needs to exist."

After nearly two years of public education about dementia, Jian'ai Charity decided to concentrate on early screening and prevention in Shanghai neighborhoods, to get more early-stage patients to a doctor and to strengthen prevention.

"A diagnosis has to come from a specialist at a hospital, but old people in the community avoid doctors, and they haven't got into the habit of going in every year for a brain checkup that includes dementia screening. If we can have a screening system in the community that doctors accept as effective — whether it's self-administered or administered by someone else — then residents can complete it themselves online, and we can find suspected cases early," says Pingguo, a member of the team.

Going forward, Jian'ai Charity plans to open Playful Old Kid activity centers in Shanghai districts including Baoshan, Changning, Putuo, Xuhui and Yangpu: "extended-family community centers for dementia intervention, providing professional services to patients with mild cognitive impairment and their families. Through physical and mental activation, cognitive training, occupational and psychological therapy, we'll design person-centered intervention plans to help slow the disease, ease the caregiving burden on patients' families, and improve the quality of life of families living with dementia."

Shuijing, meanwhile, is thinking about how to get more out of theater. Besides touring China with the Spanish company again this September, she is considering a booklet printed with information and resources on Alzheimer's, to hand to the audience at every performance.

IV

This isn't only a sad story.

After fighting many rounds with the stubborn, sick Dorine, André decides to stop "correcting" her. He lets her wear her clothes inside out and socks on her hands, and keeps her company, calmly, through the last of her life.

After a performance in Xi'an, Shuijing met a young woman whose grandmother also had Alzheimer's. Even after she had lost every other power of recognition, she still knew her husband. The young woman said: "I wasn't by her side when she went. Thank you for this play — it made me believe my grandmother was happy in her last days."

Li Xia likes this kind of warmth: "Getting this disease isn't the end of the world. We all have to face growing old and dying." It's also why she has kept going out to promote the film with the Please Remember Me team — because it is "not so grief-stricken; there's a lot of warmth and tenderness in it."

Shufeng never treated Weifang like a patient. He bought a stock of hairpins to keep at home, and whenever Weifang lost one he would play along — "let me help you look" — then take a new one out of a drawer and hand it to her. Though she no longer recognized any of her other relatives, Weifang always knew Shufeng. The two got up early to do tai chi together, went for walks together, and, before her condition grew severe, even took a trip to Hangzhou together.

For Zhou Yang, photography became the medium through which she and her grandmother could "talk." When she and her mother called out to her grandmother to take her picture, the old woman would sometimes respond. Against doing nothing, just watching over each other blankly, those rare responses were a comfort.

Step outside one small family, though, and try to reach the much larger population across society, and nothing is simple.

One reason is that the most basic public education and the more advanced work of assessment, screening and treatment form a chain. The whole thing pulls in nearly every member of society, and no single force can carry out the entire process alone.

What Shuijing wants is to put those resources together and find a way to "stop people from stigmatizing this disease, let them know it can be diagnosed earlier and that there are some good treatments, and, if it does happen, how family, nursing homes and other institutions can take better care of patients."

Feng Du and Zhao Qing have slowly started experimenting. They are applying for a dragon seal — the permit for a theatrical release — and have cut the film to several lengths, hoping to show it in different venues around the country. "The first step is to push the film out across the country, then use institutions' influence to spread more strength... to use the film as a tool, pull in the dementia-friendly institutions, and put their resources together," Feng Du said in an interview.

Things have taken a turn for the better over the past two years. The government has begun paying attention to the worsening problem of an aging population, and coverage of Alzheimer's and other dementias has started appearing on platforms like CCTV.

But stirring people's sympathy is only the first step. What comes next — how to build up medical resources and use them — is harder.

"Let's take it slow." Faced with this subject, all of them, without exception, ended with the same words.

Cover image from barcelona-metropolitan