Translating Alzheimer’s : Health: USC researcher Maribel Taussig helps identify and track the disease in the Latino community. She also conducts workshops for care-givers.
Ysaura Perez is rearranging the food on her plate, unsure of what to do with the peas she scoops onto a fork. Her husband, Mario, tells her to eat, but Ysaura, found to have Alzheimer’s disease 10 years ago at age 70, doesn’t know when to stop chewing and swallow. As with every meal, Mario reminds her.
From the Perezes’ living room sofa, Maribel Taussig, director of the Spanish-Speaking Alzheimer’s Disease Research Program at USC, takes in every comment, every move made by the couple. With the cooperation of 86 Latino families, she has been entrenched in research that many health care experts call “groundbreaking” and “a model project for the country.”
What Taussig is doing is asking questions. A lot of questions. In Spanish.
Her aim is to educate the Latino and medical communities about Alzheimer’s--a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior--among the Spanish-speaking. Unlike other illnesses--heart disease, diabetes, hypertension--”Alzheimer’s in the Latino community does not get the kind of attention it deserves,” Taussig says.
Because of language and cultural barriers, the disease is sometimes misdiagnosed by professionals--or ignored by family members, she says. Some of the families seek out a curandero , or healer, who is not medically trained, find inadequate remedies at a botanica , or herbal shop, or make trips to the border for “a miracle drug to cure something they know nothing about and which should involve a thorough diagnosis.”
One of Taussig’s first goals was the creation of Spanish-language tests to help in the diagnosis of Alzheimer’s. The tests are designed to gauge memory, concentration, attention span, vocabulary, language and reading.
Subjects are asked to copy figures, to remember items pulled out of a bag, to name things that begin with a certain letter for one minute and to carry out such tasks as folding a sheet of paper in half and placing it on the floor. The battery of 10 tests takes from 40 minutes to three hours to complete, depending on a patient’s level of memory impairment.
Taussig’s tests are the first in the country to target the elderly Latino population (65 years and older), currently estimated at more than 1 million. Sixty percent of that total do not speak English, which explains, she says, why many older Latinos shut themselves in at home or don’t know where to find help. The elderly Latino population is expected to quadruple by 2020.
Taussig, who was born in Spain, became interested in gerontological research among the Spanish-speaking after working in the late 1970s as a registered nurse in Arizona, where she saw the difficulty elderly Latino patients had in communicating their medical needs to an English-speaking staff.
She received a master’s degree in nursing from the University of Arizona, and later, a doctorate in clinical psychology from the Professional School of Psychological Studies in San Diego. She is a state-licensed clinical psychologist and USC faculty member.
After completing a post-doctorate fellowship at USC’s Alzheimer’s Disease Research Center in 1987, Taussig began her own Alzheimer’s program for Latinos with a grant from the National Institute on Aging. Last year Taussig also started studying the role of Latino care-givers. She concluded that most care-givers know very little about the disease, so she wrote a 123-page Spanish-language book on the subject--also funded by the institute.
Taussig spends several nights a week and many weekends speaking to social service agencies and community groups about the plight of older Latinos. She has made presentations to such organizations as the Gerontology Society of America. Last month she was the featured speaker at an international conference on Alzheimer’s in Mexico City.
Recently, she began conducting workshops citywide for Latino care-givers referred by social service agencies, hospitals and a Latino support group for families of Alzheimer’s patients. And her tests for Latinos who may suffer from Alzheimer’s are slowly being adopted in various Latino communities nationwide, in addition to the Consortium to Establish a Registry for Alzheimer’s Disease, based at Duke University Hospital in North Carolina.
But Taussig believes her work is far from complete.
Many Latinos who undergo diagnostic tests for Alzheimer’s face yet another problem when physicians and health care experts are not Spanish-speaking. Often, those health professionals must rely on interpreters. Taussig reports that more than half of the patients in her program have been attended by non-Spanish-speaking doctors who relied on interpreters. And frequently, Taussig says, that interpreter was a family member or an individual “not equipped to handle the complexity of the translation” involved in diagnosing Alzheimer’s. She says inadequate translation can lead to such misdiagnoses as depression and arteriosclerosis “when the symptoms clearly are Alzheimer’s.”
Dr. Hector Flores, president of the Chicano/Latino Medical Assn. of California, which has 500 members, says room for misdiagnosis exists “when a physician settles for second best with a translator.”
“Even with a family member translating, you don’t get accurate and straight information. A family member may editorialize and censor. There are cultural issues at hand with the way a patient regards health and illness, and unless one is tuned into that sensitivity, one will miss important data to make a correct diagnosis,” Flores says.
“There is a need for physicians who are linguistically, culturally and experientially connected to the Latino community,” he says. “As providers we need to heighten our awareness of the prevalence and existence of diseases such as Alzheimer’s so we can detect it early and access the appropriate types of treatment needed.”
Dr. Daniel Dunkelman, president of the 40-year-old California Hispanic-American Medical Assn., estimates there are at least 1,000 bilingual physicians countywide to serve an estimated 3 million Latinos, the majority of whom do not speak English.
“The problem we face is in how to reach the Hispanic community,” says Dunkelman, an Argentine. He points to Spanish-language TV and radio announcements as a possibility and to health fairs at such locations as the plaza at Olvera Street, where more than 7,000 Latinos earlier this month were checked for high blood pressure, hypertension, cholesterol, diabetes and given information on AIDS.
“Alzheimer’s is very important, also,” he says, “but it has the same type of problem as other diseases. Culturally, Hispanics will wait and go to the doctor when they are very sick, instead of going at the onset of an illness.”
Taussig says her research indicates that Latinos whose illnesses are diagnosed as Alzheimer’s have had the disease for at least five years before getting help, compared to less than three years for Anglos.
According to the Chicago-based National Alzheimer’s Assn., the disease is the fourth leading cause of death among all adults in the United States. An estimated 4 million Americans, including 10% of those 65 years and older, are afflicted with the disease. Annually, 100,000 lives are lost to Alzheimer’s.
“The sooner we know more about Alzheimer’s in Latinos--such as do they get the disease earlier or later (than other groups) and do they manifest the symptoms in the same manner--the better off the medical and Hispanic communities will be,” she says, adding that in medicine, “Everything that is done in English should be done in Spanish.”
Taussig’s work, says Dr. Victor Henderson, the clinical corps director of USC’s Alzheimer’s Disease Research Center, “has become a standard across the country for Hispanic populations. She is sensitive to the fact that one cannot extrapolate from the typical Anglo population to know what the problems would be for Hispanics.”
Ramon Valle, a national committee member of the National Alzheimer’s Assn. who teaches social work at San Diego State University, also believes that “the professional community is not aware of the time bomb that is ticking away in the elderly Hispanic population.”
He and others point to Taussig’s work--as well as the efforts of a handful of other health care professionals--in bringing the needs of Latinos to the forefront.
Still, Taussig says her work alone is not enough. And often she doesn’t know if her program will continue because funding depends on the constant grind of grant-writing and proposal-making at a time when money for research has become increasingly scarce.
“The Alzheimer Latino patient is an invisible patient,” Taussig says, adding, “That’s why I don’t give up. When the families come to see me, they are desperate. You can see it in their eyes, in their faces.”
Mario Perez, 68, recalls too well how difficult it was for him and his wife, Ysaura, 80, “to understand how Alzheimer’s would affect us.” Married for 35 years, the Perezes--Mexico natives--have no children.
“I remember how my wife would forget things, even cooking. I would take her to the clinic and she would get medicine, but still she would forget,” Mario Perez says in Spanish. Finally, after many clinic visits and after waiting “for months for my wife to get better” the couple went to a Spanish-speaking doctor.
But even then, Perez, a retired upholsterer, says, “We didn’t get much of an explanation. We just got some more medicine. We weren’t prepared for the future of this horrible disease.”
Perez, who suffers from Parkinson’s disease, says he manages as best he can. Micaela (Mickey) Virgin, a housekeeper who looks after the couple seven days a week from 8 a.m. to 4 p.m., keeps their East Los Angeles apartment spotless, washes and folds their laundry and prepares breakfast. At lunchtime, food is delivered by Meals on Wheels. In the evenings, for dinner, Perez always prepares a glass of milk and bread for himself and his wife “because it is the easiest thing to fix.”
Their days are spent watching Spanish-language TV programs. Once a month, Virgin escorts the couple, on foot, to the nearby grocery store where Perez buys money orders to pay bills. The Perezes make ends meet on a monthly $1,000 income from Social Security and supplemental welfare assistance.
Says his wife in a slow stammer: “I am happy. I am lucky. I am comfortable.”
Still, her husband sometimes sinks into depression.
“I see my wife try to write, but she can’t remember her name. When she dresses, the pants go on backward and the buttons aren’t buttoned right. I need to remind her to take a bath, to eat, to use the bathroom. And sometimes she becomes aggressive. It’s gotten worse.”
Taussig agrees that Ysaura’s condition has deteriorated. She remembers when Ysaura could tell the difference between a fork and a spoon, when her enthusiasm for eating was healthier, when her speech wasn’t quite as impaired.
She is concerned about what would happen to Ysaura if her husband--because of his own ailment--were to injure himself. Often, Perez--who manages with the aid of a walker--falls to the floor when his leg muscles become rigid, an effect of Parkinson’s disease.
Perez, who no longer drives and, like his wife, is a shut-in most of the time, says he doesn’t know what would become of Ysaura if something happened to him. He says he tries not to think about it.
“We’ll be here alive, together, until our bodies don’t want us to.”
WHERE TO GET MORE INFORMATION
* Spanish-Speaking Alzheimer’s Disease Research Program at USC, Los Angeles, Calif. 90089; (213) 740-1709. Spanish-speaking Alzheimer’s patients and their families can participate in research as well as receive care-giver information and a free copy of the Spanish-language book “La Enfermedad Alzheimer.”
* Los Angeles Alzheimer’s Assn. Multicultural Outreach Advisory Board. The board needs ethnic volunteers from the medical community. Call (213) 938-3370 or write to 5979 W. 3rd St., Suite 200, Los Angeles, Calif. 90036.
* National Alzheimer’s Assn., (800) 621-0379 or write to 70 E. Lake St., Suite 600, Chicago, Ill. 60601.
* CERAD, (Consortium to Establish a Registry for Alzheimer’s Disease). Write to Dr. Albert Heyman, Duke University Hospital, Box 3203, Durham, N.C. 27710, for Spanish-language materials.
* National Hispanic Council on Aging, 2713 Ontario Road Northwest, Washington, D.C. 20009; (202) 745-2521.
* Grupo Siempre Viva, a Spanish-speaking care-givers’ support group that meets monthly with a licensed clinical social worker. Call (213) 806-4921 or write to 6450 Garfield Ave., Bell Gardens, Calif. 91745. The organization offers a fotonovela (illustrated booklet) for $3 and 50-minute video for $300.
