When Charles Tang's wife Amy, 76, was diagnosed with Alzheimer's several years ago, he started looking for a support group for himself. He was shocked to find that of the more than 300 Alzheimer's support groups in the metropolitan area, none were available in his native Chinese language.
"Every time I was attending the education meetings at the Alzheimer's Association, NYC chapter, I found that I was the only one who was Chinese or even Asian," said Tang, 84, of Manhattan.
It wasn't until several months ago that Fai Lin Lau, working with the NYC chapter of the Alzheimer's Association, was able to drum up enough interest to start a support group for Asian caregivers. Lau said her biggest obstacle has been trying to educate those in the Asian community that Alzheimer's is a disease of the brain.
"The first misconception is they think this is a mental illness," Lau said. "The second is they think this is a normal part of aging and the third is they think this is from something they have done wrong in their past life."
As difficult as it is to educate the public about Alzheimer's, experts said it's even harder when outreach efforts collide with cultural roadblocks. Hispanics, African-Americans and Asians are still widely underrepresented in support groups, adult day programs and nursing homes, experts said.
The reason often begins with minority communities' perception of the disease. A 2007 survey done for the Alzheimer's Foundation of America found that African-American and Hispanic caregivers possess many misconceptions about Alzheimer's. The survey found that 70 percent of African-Americans and 67 percent of Hispanic caregivers were likely to attribute the symptoms of Alzheimer's disease to old age, compared to just 53 percent of respondents in other groups surveyed.
The poll also found that 67 percent of African-American and 63 percent of Hispanic caregivers said they did not know enough about Alzheimer's to recognize the symptoms, compared to 49 percent of caregivers of other groups.
Even when minority groups recognize there is a problem, there is often resistance to reach out for help, experts said.
"Some of it has to do with the 'I can do it' pride point of view and some of it has to do with 'How can I know to trust the information that I am going to get?'" said Rosemary Irving, head of African-American outreach for the NYC chapter of the Alzheimer's Association. "And some of it has to do with a level of empathy that traditional methods are valuable within the family and so I think there's an allowance for it."
Immigrant groups in particular tend to be very insular, Irving said, and it takes several generations before a group will move into the mainstream in this country. They tend to address situations as they did in their previous country and it takes some time to get the message across to them that there's a different way to deal with these issues.
For many minority groups, the family unit is relied upon for all issues, including medical care, and it is unheard of to reach outside of the family for assistance.
"It's part of our cultural ideology that we're going to be caring for one another within the nuclear family," said Licet Valois-Gonzalez, head of Latino outreach for the NYC chapter of the Alzheimer's Association. "So we're not just going to be running out asking other people to help us, when we're supposed to be taking care of our family."
More immediate, tangible medical issues that plague African-Americans and Hispanics at higher rates than other groups can also take priority over Alzheimer's, which can take years to fully manifest.
But outreach workers said there is also a larger problem of stigma. For many communities, the words Alzheimer's and dementia are associated with being mentally ill.
Lau said that when she first began her outreach efforts, she had to beg senior centers and organizations to allow her to speak because the subject was considered taboo. "If I announced the talk was about dementia or Alzheimer's, they would not come," she said.
Paula Rice, a former caregiver to her mother who now gives speeches on Alzheimer's in the African-American community, said that the stigma over mental illness is only part of the equation for African- Americans.
"I think it's compounded because there's a stigma with being African-American period, of overcoming the stereotype of being second class, of not being smart enough, attractive enough or whatever. " Rice said. "So you've got two stigmas that you're dealing with . . . and you really don't need to be trying to overcome two things so one of them we're going to ignore and that's the dementia. So I think the denial is even greater in the African-American community and that's really a shame because it makes that early diagnosis even more problematic."
Getting past this denial becomes even more crucial because, while research on ethnic populations and Alzheimer's remains limited, indications are that groups such as Hispanics and African-Americans are at higher risk for the disease. Researchers believe this may be due to these groups living longer and also being predisposed to vascular disease risk factors, such as diabetes.
This past summer, Rep. Linda Sanchez (D-Calif.) introduced the La Cura Act of 2009, public health legislation that asks for an emphasis on education and outreach in Hispanic populations. Many adult day centers and nursing homes around the country are also making efforts to support the various ethnicities in their communities.
The Gurwin Jewish Nursing and Rehabilitation Center in Commack has implemented a Spanish-language section of their adult day program. Director Joyce Flynn said it's the fastest growing component of their program in the past seven years. Out of 220 participants, about 70 to 80 speak Spanish, along with several staff members, and activities are often tied into Hispanic culture.
Hispanic coordinator Maria Rodriguez said she usually meets resistance when she first brings up the subject to patients. "They think I'm going to put them in an institution," Rodriguez said. "I have to literally sweet talk them to make them understand but when they come in the first day, they're hooked."
At the NYC chapter of the Alzheimer's Association, Valois-Gonzalez has started a Spanish-language newsletter, along with support groups. Because of its efforts - and the rarity of information on Alzheimer's being available in Spanish - the organization's helpline gets calls from around the country, as well as other countries. Often the calls are from family members worried about loved ones having the disease and receiving services.
Valois-Gonzalez said making information available in Spanish is one step but there must also be an increased awareness of the differences within the Latino community.
"People have to make the efforts because as time goes by and we see that the Latino community is the largest minority . . . to deal with the Latino community is not only about being bilingual, it's not only the language, it's the culture," Valois-Gonzalez said. "We all come from different countries and we all have our own characteristics that make us different. Within each different culture, we might have different methods to cope with Alzheimer's."
Meanwhile Lau is hoping to start groups in Brooklyn and Queens and Irving is stepping up her visits to senior centers and churches around the city.
"I see more inquiry, more willingness to talk about it," Irving said. "But it's still a drop in the bucket."