The Dementia Campaigners Getting Communities Involved in Care
SHANGHAI — Sitting up straight, a man in his sixties looks anxious as he tries to understand his wife’s instructions. “Put your arms on the armrests,” she repeats. The man bends his elbows stiffly and holds out his hands, palms facing each other. After much effort, he finally lowers them onto the chair. “Like this, right?” he asks cautiously.
The couple are attending a gathering for people with dementia organized by Jinmei Care, a Shanghai-based nonprofit that works to build dementia-friendly communities. Hosted at Home for the Aged, a small downtown community center, the event helps residents stimulate their cognitive function through stretching exercises, singing folk songs, and playing a game where they pitch chopsticks into a basket.
Jinmei is one of a handful of social organizations helping Shanghai deal with a growing dementia epidemic. China is among the most rapidly aging societies in the world, and this is leading to a corresponding rise in chronic health conditions including Alzheimer’s disease. Nearly 15% of residents in Shanghai are aged 65 or older, and an estimated 300,000 are living with dementia, the most of any Chinese city.
The Chinese government made preventing dementia part of its national health plan in 2016, and a report by Alzheimer’s Disease International released in May said the country’s dementia plans are still “in development.” Social policy researchers observe that both people with dementia and their caregivers often feel overwhelmed and receive little community support.
Jinmei, which was set up by several family members of dementia patients in 2012, is working to address this by raising awareness of dementia among neighborhood committees, which play an important role in managing the affairs of local communities in Shanghai. With a team of 16 full-time staff members, the organization provides services including dementia risk screening, consultations, non-medical interventions, and organizing family support groups.
The nonprofit is also working with the district government of Changning, where Home for the Aged is located, to build Shanghai’s first pilot dementia community support scheme. It now provides services to 130 families in the district. Jinmei’s research has also helped Changning create the city’s first official guidelines for creating a dementia-friendly community, which are set to be released on September 21, World Alzheimer’s Day.
Fei Chao, director general of Jinmei Care, tells Sixth Tone that efforts to build dementia-friendly communities remain at an early stage in China compared with high-income nations like the United States and Japan.
“Those countries already have basic services in place, such as access to social care and medical treatment,” says Fei. “They are focusing more on how to protect the legal rights of people with dementia and how to create a more caring social environment for them.”
In China, by contrast, even relatively wealthy cities like Shanghai are still working to make sure residents have access to basic services, such as dementia screening tests, training for family caregivers, and care facilities.
“Due to the much faster pace of population aging in China, the government is having to address both the basics and these cultural and legal issues at the same time,” says Fei. “The sudden transformation into an aging society left China with little time to get fully prepared. The government has put much thought into it, but it remains a challenging issue.”
Shanghai’s caregivers also struggle due to a lack of education about dementia. Jinmei recently conducted a survey of more than 100 relatives of people with dementia, according to Fei, and he was struck by the findings.
“More than half of the caregivers said they were concerned about memory training, as they didn’t know how to do it and had no one to guide them,” says Fei. “Another major concern was about the physical health of people with dementia, who sometimes can’t tell people they are in pain due to their speech difficulties.”
Perhaps even more seriously, many families remain reluctant to seek help because they worry they will face social stigma. “Family members often want to hide the fact that their relative has dementia,” says Fei. “Even the staff of their local neighborhood committee doesn’t know about their situation.”
Jinmei encourages families to be open about their situations. Chinese society has become more understanding toward dementia issues than many realize, according to Fei.
“Social attitudes toward dementia are not that frightening, and the fear derives more from the family members themselves,” he says. “Once the neighbors are aware of the problem, it often helps. “They can keep an eye on older residents with dementia and offer help when they leave the house alone.”
This is a major reason why Jinmei works closely with local neighborhood committees. Raising awareness among local committees makes it easier for the nonprofit to identify residents in need of support.
“In the early days, most of the neighborhood staff knew little about dementia, which was often translated as chidai [dull-witted] back then,” says Fei. “The staff often only considered very serious cases to be dementia, whereas less serious symptoms such as memory loss were put down to old age.
“Now, dementia is often understood as a cognitive disorder, and it is easier for people to be open about it because the meaning is less pejorative,” Fei continues. “The neighborhood staff is more active in sharing health information with us if they spot any signs of dementia among elderly residents. Meanwhile, as more young people join committees, I believe they will be more cooperative, as they tend to be more open to new ways of doing things.”
It has taken years for Jinmei to learn the most effective ways to work alongside the neighborhood committees, which often lack resources. A typical neighborhood committee of five or six people typically oversees more than 1,000 elderly residents, Fei says.
“The committees don’t want help organizing dementia awareness events themselves; they want an organization to come and take over the task of addressing the problem,” says Fei. “We now support them in doing their job and raise awareness at the same time, instead of giving them extra tasks to do.”
Now, Jinmei is looking to move beyond working with neighborhood organizations. It is increasingly working with local businesses.
“For businesses directly related to dementia care, such as banks and drug stores, we suggest that they establish special channels for families of people with dementia,” says Fei. “That way, we can shorten waiting times for access to services. For those that are less related, we invite white-collar office workers to work with us as volunteers.”
The organization even plans to launch a dementia café program to provide work for people with early-stage dementia, as a way to keep them active and improve their social lives.
“Creating a dementia-friendly community also means inspiring people with dementia to make the most of their abilities,” says Fei. “It’s not only about giving them help, but also about involving them in the process.”
Editor: Dominic Morgan.
(Header image: Dementia patient Ding Deren plays a game at the event organized by Jinmei Care in Shanghai, Sept. 17, 2019. Zhu Yuqing/Sixth Tone)