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 \o7 curandero\f7 , or healer, who is not medically trained, find inadequate remedies at a \o7 botanica\f7 , 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."