Charity targets the brainpower of the aged

The Jian'ai Charity is devoted to helping dementia patients, teaching them the traditional folk art of paper-cutting.
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A volunteer (right) teaches a dementia patient how to do paper-cutting.

In 2012, a neighborhood committee in the Changshou Community of Putuo District invited local residents to visit a new community building. It was a day that changed the life of Tang Bin.

Two floors of the building were offices for non-profit organizations, and two served as residences for the elderly.

“There were seniors with dementia,” recalls Tang, 40. “Seeing them reminded me of my grandmother, who died of dementia in 1999. I was very close to her. In her last years, she couldn’t recognize almost anyone in the family but me. And it is my lifelong regret that I wasn’t there at her deathbed.”

The former travel service worker founded an organization called the Jian’ai Charity, devoted to helping dementia patients and screen high-risk groups.

The organization has served more than 20,000 people living in 150 communities in Shanghai. At a recent event, Shanghai Civil Affairs Bureau cited programs run by Jian’ai as among the top 10 in the city.

Tang says when he first visited the elderly care residence in Changshou Community, he was disappointed to find that the elderly weren’t receiving proper care.

“The  seniors were divided into disabled and non-disabled ones, and those with dementia weren’t getting special care,” Tang says. “I was shocked to see so little progress in the 13 years since I lost my grandmother.”

Deciding that he needed to do something, Tang fell back on his hobby of paper-cutting. He became a community volunteer, teaching seniors with dementia the traditional folk art. He thought it would not only help keep their brains active but would also bring some joy to their closed worlds.

Tang’s course was so popular among seniors and the community that he was asked if he could do more. That led him to register a non-profit organization in April 2013.

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Seniors suffering dementia show off their paintings.

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When Jian’ai was first founded, Tang was the only staff member, with another volunteer providing some part-time help.

“During the first year, I didn’t dare quit my regular job,” Tang says. “We just recruited several volunteers and traveled around the city every weekend to teach seniors paper-cutting. But during that time, I realized the traditional art form was inadequate to improving the quality of life for those seniors.”

In 2014, Tang left his job in the travel service industry to devote all his time to Jian’ai.

“It was not an easy decision,” he says. “My income dropped, and my family was not happy about it. But I still believe that helping seniors is more important.”

Jian’ai gets its funding from several foundations and contracts with the government.

One of the first issues Jian’ai addressed was helping the families of dementia sufferers and dementia patients themselves understand the disease better, to alleviate fears and misconceptions. That was no easy task because of deeply rooted misperceptions.

“For example, we found that most people equate dementia with Alzheimer’s and believe that dementia is not treatable,” says Tang. “Some of the families we encountered had never taken people suffering from memory problems to hospital for diagnosis because they put it down to Alzheimer’s and just gave up.”

He says that many treatable conditions may trigger dementia. Cardiovascular disease and senile depression, both high-risk factors of dementia, are often neglected.

At the same time, Jian’ai has to battle against the stigma of dementia. Many families or even sufferers themselves are ashamed to discuss the condition.

“Years ago, Shanghai only had one special outpatient service for dementia at the Mental Health Center,” says Tang. “Many patients or families resisted going there because they thought it was a ‘hospital for psychopaths’.”

Faced with such daunting hurdles, the charity decided that one of its priorities was to educate communities with factual information about dementia in communities and to screen as many early-stage patients as possible in the hopes that timely medical intervention might slow the advance of the disease.

The organization started a program called “School of Memory.” In cooperation with neurologists, the program offers 12-session courses in communities and tests for residents. The course also teaches seniors how to train their brains through physical exercises. It now serves more than 100 communities in the city.

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An elderly couple suffering dementia proudly displays their paper-cuts.

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An elderly woman with memory problem shows off her artistic creations.

Jian’ai was shocked by the results of its screening tests.

“About 30 percent of people between 55 and 75 years old were suspected of having slight cognitive disorders,” says Tang. “That meant, for example, they might not be aware when they leave the stove gas on.”

The advanced stages of the dementia might last for only three to four years before a patient dies, Tang says.

“But the period of cognitive disorder might last for five to 25 years,” he adds. “During that time, family members might not realize that behavior is becoming abnormal. They simply attribute changes to old age.”

To provide a platform for therapies, Jian’ai started the “Hut of Memory,” a program designed especially for seniors with slight cognitive disorders. It provides courses and activities aimed at helping seniors keep their brains active.

“We want to build a seamless connection between the two programs, so that the seniors can both come to understand their problems and how to solve them,” Tang says.

That’s easier said than done. Despite financial support from foundations and government contracts, the cost of operating the two programs in all local communities is beyond Jian’ai capability. Charging for the services risks discouraging the participation of residents.

“They are not willing to spend money on community services where they don’t see immediate results,” Tang says.

He notes that government needs to do more in terms of dementia prevention, identification, education and treatment. Jian’ai is powerless to deal with the situation on its own.

“We already have very mature screening for diseases such as diabetes and high blood pressure in regular physical exams organized by communities,” he says. “We hope to see the day when dementia screening is included as well.”

The matter is of some urgency as Shanghai moves deeper into an aging society.

“We will notice how serious the problem is in one or two decades,” Tang says.

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Tang Bin (left), founder of Jian'an Charity, plays a game with a senior who suffers from dementia.

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