Charles Tang noticed his wife was behaving strangely. But he didn’t know what to do about it.
“She would forget food in the refrigerator. She forgot to cash checks,” says Mr. Tang, an 83-year-old New Yorker, of the symptoms his wife, Amy, now 77, began to exhibit about six years ago. Eventually, she was diagnosed with dementia.
Feeling overwhelmed, he sought information from his wife’s doctor about her condition, he says, “because my friends don’t have this kind of problem.” He was referred to the Alzheimer’s Association’s New York City chapter and began attending the charity’s educational meetings. But as the only person of Chinese descent—and usually the only Asian—in the room, he recalls, “I felt quite lonely.”
Then, at a neighborhood senior center, he heard a presentation by Fai Lin Lau, the Hong Kong-born manager of Chinese outreach at the Alzheimer’s Association chapter. He joined her support group—one of only two in the city in which Cantonese is spoken—and felt more at home.
Sharing something as personal as dealing with Alzheimer’s is rare for Chinese New Yorkers, he says.
“The Chinese here are very conservative, especially about this kind of sickness,” he says. “They don’t talk openly, but in the support group it is different, because people talk the same language, and sympathetically.”
Ms. Lau’s program is part of a larger effort by the charity to reach out to ethnic, racial, and religious groups in the city—black, Latino, and Orthodox Jewish as well as Chinese New Yorkers—who may not otherwise have ready access to the charity’s services, or may not take advantage of them due to cultural barriers.
Those barriers may include language, or even cultural ideas about the nature of Alzheimer’s itself, say the charity’s outreach workers.
The organization saw a need for such aggressive marketing to minorities because its statistics showed that most of its clients in the five boroughs of New York were white, even though minorities make up a majority of people in the city, says Margaret H. Reiff, executive director of Jarvie Commonweal Service. The New York grant maker has long supported the Alzheimer’s Association chapter, giving it $35,000 over two years to start its Chinese outreach program.
She is pleased with the results of the charity’s efforts to reach out: “They have figured out how to be as culturally competent as they can.”
After Lou-Ellen Barkan, president of the Alzheimer’s Association’s New York City chapter, took leadership of the group in early 2004, she began noticing how the charity’s ability to reach people in need of its services was “limited by the places that we went and the material that was presented and the language into which it was translated.”
An internal study by the organization zeroed in on those areas of the city that were being underserved by the charity, and in response, the group began about three years ago to focus on its gaps in coverage.
First, the group built on its existing efforts to engage Latinos by hiring Licet Valois, a longtime volunteer, as an outreach manager, charging her with bringing in more clients from Latino neighborhoods by running education campaigns, offering counseling, and leading support groups.
Ms. Valois, who was born in Colombia, says cultural norms keep Latinos from seeking help when Alzheimer’s strikes their families. In many Latino households, a stigma is attached to the disease, she says.
“We don’t see it as a neurological disease, we just see it as a mental illness. Just craziness,” she says. “We also believe losing your memory is a normal part of aging.”
And, she adds, “why would you seek services for something that happens to everybody as you grow older?”
Traditions and Dialects
Language is also a huge barrier for many Latinos, Ms. Valois says, starting with families’ interactions with doctors. And immigration status is a hurdle in some cases: “If you are undocumented here, you are not going to be seeking services, because you might be deported.”
To reach Latino caregivers, she makes presentations at centers for elderly people, churches, and consulates for countries where Spanish is the main language. She talks to clients and staff members at community health centers, adult day-care programs, and nursing homes, to help them identify people with Alzheimer’s. The charity also publishes a Spanish-language newsletter, which goes to centers for older adults all over the city, and Ms. Valois spreads her group’s message on local Spanish-language news media.
Because Latinos come from a variety of countries, with distinct traditions and dialects, Ms. Valois says, “I have to arrange my vocabulary, my way of expressing myself, depending on the group I’m talking with.”
For example, she says, “I use a lot of humor in my presentations, and sometimes I will use a word like 'sancocho,’ which is a typical soup from Colombia”—and, she says, a synonym for “a mix of everything.”
But, she says, “when I would talk to Peruvian people, Ecuadorean people, they wouldn’t know what I meant.”
Where the Clients Are
Building on its efforts to include Hispanics, the Alzheimer’s Association’s New York City chapter also hired managers to reach out to black and Chinese New Yorkers and a part-time worker who gives presentations to Orthodox Jewish groups.
Rosemary Irving, the group’s manager of African-American outreach, says she has had success in finding clients at women’s health groups, churches, and even beauty parlors, where she drops in and distributes literature. Black sororities and fraternities, and their alumni associations, she says, have been rich sources of clients—and volunteers.
For Ms. Lau, who began her work at the Alzheimer’s Association in 2007, the obstacles in reaching out to Chinese households are similar to those faced by her colleagues: language barriers, insular families, and incomplete education about the disease.
And another factor adds to the stigma and reticence surrounding Alzheimer’s. Sometimes, she says, Chinese people think that the illness “is revenge on what they did wrong in their past life.”
This may be a manifestation of Buddhist or other spiritual beliefs, she says.
Ms. Lau’s success in putting together a support group in Manhattan’s Chinatown (and another for Chinese residents of Queens) despite those barriers is impressive, says Ms. Barkan: “For people for whom the cultural norm is not to share this kind of problem, because there is a sense of shame perhaps, or fear, to be able to speak openly and talk about their concerns, and share the resources with each other is a wonderful accomplishment.”
The Alzheimer’s Association’s New York City chapter has seen an increase in clients in general and from black, Latino, and Chinese neighborhoods in particular, Ms. Barkan says, since intensifying its efforts to reach those New Yorkers. The economy, she acknowledges, also plays a role: More people need social-services help, and the search for that help is harder for those who are not fluent in English.
But the charity’s new influx of clients has not translated into an uptick in donations for the charity, which operates on an annual budget of $5.4-million. Eventually, turning client families into donors would “be one of the goals,” says Ms. Barkan. “Many of these communities have resources, they’re certainly not impoverished. But we haven’t been approaching it that way.”
In the meantime, the group is anxiously eyeing the organizations that currently support its work. Grant makers that have in the past enthusiastically supported programs that reach out to minority neighborhoods, Ms. Barkan says, are often limited these days by shrunken resources.
Jarvie Commonweal Service, for example, will not renew its current grant because it is temporarily suspending all new grant making to charities for the next three years due to the economy, says Ms. Reiff.
Wandering has long been an issue with Ms. Mendez’s ailing mother—who, like her daughter, is originally from Bolivia. “No matter where she is, she always wants to go back to her house,” says Ms. Mendez.
Ms. Valois and her colleagues at the Alzheimer’s Association, she says, gave her some tips to prevent her mother from getting lost. “They told me to paint all the walls the same color, even the door and doorknob,” says Ms. Mendez.
The monochromatic effect, she was told, makes it harder for people with dementia to find the knob and open the door.
Such practical aid has been tremendously helpful, says Ms. Mendez.
“Not everyone is willing to listen to your problems,” she says. “Licet is there, she picks up the phone, and she listens. She is there to give you advice. She is there to give you an idea. You are not alone.”
That idea is underscored by the people she shares stories and advice with at the caregivers’ support group she now attends regularly in Jackson Heights. “Licet is the one who’s guiding us,” she says. “But we are the ones teaching each other.”