By award-winning writer, Jamie Talan

Last July, Francisco Obando disappeared, setting off a two-day search through the streets of Queens. When police found him in a park in a neighboring borough, the silver bracelet on his left wrist was a clue that they had found the right man. Four years earlier, Francisco Obando’s wife, Lilia, received two matching bracelets from social workers at the New York City Chapter of the Alzheimer’s Association.* Her bracelet identified her as a caregiver; him as the patient.

The bracelets marked a poignant milestone in their marriage. Once she realized that Francisco had a disease called Alzheimer’s, it was eight long years of watching him deteriorate. In 1995, his temperament shifted from loving, calm and happy to aggressive and paranoid. She drove him to a local emergency room, and doctors said he had dementia. “That was all they said,” Mrs. Obando recalled. He was 62. She walked away thinking: “So, he’s crazy?”

Mrs. Obando and her two grown children took care of Francisco for years without help from the community. She explained the problem to his boss at the paint factory where he had worked hard for decades. He was given an easier job until he could ease into retirement and collect his Social Security benefits. During this time, he grew more paranoid, hiding jewelry and money and blaming the losses on his son. Today, at 74, he no longer remembers that Lilia is his wife, the woman he met and married when she was only 19 and he was 34. Now, she is a sister and sometimes a girlfriend. All the time, she is a caregiver.

Now, his short-term memory has disappeared, as well. He has shaved four decades off his life. In his mind, he is 30 years old. He’s constantly trying to find his parents. They are dead.

Until Mrs. Obando had a diagnosis for her husband and a place to talk about his odd and scary behavior, she stayed quiet about his dementia. Their son’s boss was the first to say that Francisco might have Alzheimer’s disease. That’s when she went to the New York City office of the Alzheimer’s Association and explained the problem they faced with Francisco. That same day, she met another woman with a similar story of love and lost memory. “I am not the only one,” she thought.

Today, Mrs. Obando can tick off the laundry list of symptoms that define Alzheimer’s. She is part of the Chapter’s growing community of minority men and women who are grappling in their own ways with Alzheimer’s disease. “Just knowing what it is has helped enormously,” she said. She has also learned to reach out for help. Her husband goes to a nearby center three days a week where he dances, sings and engages in any number of stimulating activities. Twice a month, she attends support groups at the NYC Chapter’s office led by Licet Valois, a social worker who manages the Chapter’s Latino Outreach program. There is a similar program for African-Americans, and the Chapter is hoping to expand the program to Asian and Russian families. Chapter staff go to churches and senior centers to educate people about the signs of Alzheimer’s and related dementias, and where to go to get a proper diagnosis and treatment.

The Chapter also offers caregiver training programs in Spanish. “City officials project that by 2050, about 25 percent of the U.S. population will be Hispanic,” said Ms. Valois. And federal statistics support a staggering increase in Alzheimer’s as Baby Boomers age in the coming decades. The Chapter is well aware of the factors that keep minorities from getting proper medical care – and these include cultural, socioeconomic and language barriers. As a result, the Chapter has started many programs to meet the growing needs of these groups.

“We are offering services and education to diverse communities in the city and the outlying areas,” said Jed Levine,Executive Vice President and Director of Programs & Services. “There are many minority families who never go for help and don’t know how to access the health care system.”

Learning about Alzheimer’s disease in her native language and meeting other Hispanic families with sick loved ones has helped Mrs. Obando cross the medical divide. And she is not alone. The people who have entered programs through the Alzheimer’s Association, whether it is caregiver training or support groups, are learning how to take care of their loved ones – and themselves. Mrs. Obando said she understands what the future will bring, but the community’s support has helped her as new challenges surface. “I don’t want him to go into a nursing home,” she said. “I will keep him here with me.”

Alzheimer’s experts understand the racial and cultural divide and have been paying more attention to minority populations. Jennifer Manly, PhD, Associate Professor in the Department of Neurology at Columbia’s G. H. Sergievsky Center and the Taub Institute for Research in Alzheimer’s and the Aging Brain, has become particularly interested in the neuropsychiatric tests used to diagnose Alzheimer’s. She has found that the tests do not take into account differences in race and culture. Designed to measure cognitive impairment, her questions and the patients’ answers are measured against a standard norm, and that is based on a group statistic made up of answers from a largely Caucasian population.

Dr. Manly was a doctoral student in Southern California in the mid-1990s when she discovered that she could measure and adjust the expectations of how African-Americans perform on these tests and make more accurate diagnoses of cognitive impairment.

“There are many things that we know about these tests,” says Dr. Manly. “We would expect something different for a 17-year-old and a 70- year-old. Women do slightly better on tests of verbal function, and men score better on spatial tests.” Another factor has been part of scientific lore for decades: That the more years of education someone has seems to protect them from developing Alzheimer’s. It’s based on a theory of cognitive reserve. That learning builds better brains, and the stronger the brain, the better it can stand up to the ravages of Alzheimer’s, which damages brain cells that control memory and thought.

But Dr. Manly figured out that these researchers didn’t account for the quality of those years of schooling. And when she asked the right questions and did her own calculations, she found that the quality of the education was more important than race or culture in determining risk for Alzheimer’s.

With this information in hand, she arrived at Columbia in 1996 to work with Richard Mayeux, MD, and his colleagues who were conducting a large epidemiological study on Alzheimer’s in Northern Manhattan, a community rich in minorities. The scientists had published several reports that suggested that the incidence of Alzheimer’s was higher in African-Americans. “I wondered if these findings were just a side effect of inaccurate testing results,” she said.

Indeed, she put her calculations to the test and found that the quality of the education was the main predictor of risk, and once she accounted for the ethnic differences among older people in these Northern Manhattan neighborhoods, the differences melted away. “Race in and of itself needs to be broken down,” said Dr. Manly. “African-Americans may be at higher risk as a group, but it may have nothing to do with race. It may be quality of the education they receive.”

Research and cognitive testing aside, Dr. Manly worries that access to health care may be keeping many minorities from getting the help that they need. “Many minorities barely have adequate health care. They may be seeing doctors who are not knowledgeable about Alzheimer’s or only have enough time to address emergent medical problems. They may not even ask about memory problems,” she said. Even if doctors did ask, she said the structure of the family and community among African-Americans is not to seek help for older people losing function or cognitive ability. “People need to be educated,” she said. “They just don’t know what questions to ask. They are not clued into the purpose of early diagnosis.”

Hispanic families have another layer of complexity. Often, the health professionals who treat them do not speak their language, Dr. Manly added. At Columbia, they do all the testing in Spanish. But even when a diagnosis is positive, many people still don’t understand that Alzheimer’s is a progressive disease and the treatments may work to improve some of the symptoms and only temporarily. “They are not familiar with Alzheimer’s,” Dr. Manly explained. “They ask for medicine, and they think the disease will go away.”

Dr. Manly and other Alzheimer’s experts worry that if and when preventive strategies emerge from the research labs or better treatments come along, minorities will be the last to benefit. “Lines of communication are broken,” she said.“We need to address these problems.” She said that groups like the Alzheimer’s Association have their work cut out for them.

One of the key developments at the NYC Chapter is Dementia Home Care Training in Spanish. Home health aides from many countries learn about the illness and techniques to help them communicate with patients in the throes of a progressive dementia. “We teach them to find a way to communicate once words are lost,” said Alison Reynoso, MPH, a Dementia Care trainer. They are taught to care for patients during every stage of the disease. They learn about the differences between normal forgetting and Alzheimer’s memory loss. They are even learning exercises and yoga techniques to keep their patients physically and mentally active.

One home health aide was taking care of an elderly Spanish man with Alzheimer’s. “What would you like me to call you?” she learned to ask in her training. “Caballero,” the man replied. It means gentleman. She watched him fill with pride. When the man’s wife asked why she was calling him “caballero,” he simply responded:“Why don’t you call me that, too.”

Licet Valois conducts her support groups in Spanish. “It’s part of our culture that we don’t ask for help,” she said. “We take care of our own.” But she teaches families that it is important, even necessary, to ask for help. She counsels families on various fronts, from ensuring that they take their medications to helping them navigate the complex Medicaid system. She has made connections with local Spanish-speaking internists, neurologists, psychiatrists, geriatricians and even lawyers. “The needs of our clients keep growing,” she said.

Rosemary Irving, the NYC Chapter’s Manager of African-American Outreach, agrees. She said that it is critical to reach out to people in the community to let them know the services that are available to them. She has started support groups at local churches and senior centers. “The trick is reaching out, and letting people know that they are not alone.”

As for Lilia Obando, she is now proud and confident of her role as a caregiver to a loved one with Alzheimer’s. Her daughter shares the daytime responsibility when her mother is at work. “He was a loving husband and father,” Mrs. Obando said.

She said she has learned how to care for him. She also wants to start volunteering at the Chapter to educate and support other Spanish-speaking families. “The Alzheimer’s Association has given me so much. I am thankful and now I can tell people that my husband has a brain disease, and they call it Alzheimer’s. It’s not him. It’s the disease that makes him the way he is now.”

When she looks down at her bracelet, a symbol of hope from the MedicAlert® + Alzheimer’s Association’s Safe Return® program, she understands the bond of the silver circles — one on her wrist and the other on her husband’s. “He is a wonderful man,” she said. “I will do the best I can.”

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