Alzheimer’s in Latinos
Expected to increase by more than 800 percent, Chicago researchers are trying to change course
CHICAGO — Salvador Campos had his first stroke in February 1994, weeks ahead of his 49th birthday. The event left the father of three not only unable to move, but unable to remember the names of loved ones, including his parents. Faces in family photographs were suddenly unfamiliar too. So were addresses, even his own. But Campos’ mobility and memory gradually returned. All appeared normal until Campos, who immigrated to the U.S. from Mexico in the 1970s, had another stroke in 2014, this time at work. “‘Check on Dad,’” Martha Campos, his wife, remembers her daughter telling her after that stroke. “‘He’s walking strange and acting weird.’” He was never really the same after that day, and a year ago, he was diagnosed with Alzheimer’s disease. Now 73, he is the third of his parents’ six children with the progressive brain disease. There is no cure. In Illinois, 220,000 people are living with Alzheimer’s disease, which gradually, irreversibly degrades cognitive functions, according to the Alzheimer’s Association. By 2025, an estimated 40,000 others are expected to develop the condition, a more than 18 percent increase in this state alone. And though diagnoses of Alzheimer’s are expected to increase as the senior population continues to grow nationally, Latinos like Salvador Campos are 50 percent more likely to develop the disease than their white counterparts, researchers from the University of Southern California say. Between 2012 and 2060, the number of Latinos in the United States living with Alzheimer’s disease is projected to increase 832 percent — from 379,000 to more than 3.5 million, this research indicates. Despite this, experts say Latinos living with Alzheimer’s are less likely to seek formal treatment for it, often because of financial barriers, including not having health insurance. Language and cultural barriers also create challenges in accessing care, experts note. “This really is a problem,” said David X. Marquez, lead investigator of a Rush University Medical Center study focused on Alzheimer’s disease risk factors in older Latino adults. “It’s affecting Latinos a lot. And I’m not sure that people really know it’s the problem that it is.” Researchers do not fully understand why older Latino and black adults are at increased risk for Alzheimer’s disease, said Marquez, who holds a doctorate in kinesiology. Genetics, level of education, coincidence of chronic disease, like diabetes, and stress are all suspected factors, as is an inactive lifestyle and poor nutrition.
Search for support
While more answers are still many years away, the search for support is unrelenting for families dealing with an Alzheimer’s diagnosis, including Martha Campos. The Camposes have been married for 45 years, and since Salvador Campos’ first stroke, Martha Campos has been his primary caregiver. The role has forced her to give up working outside their home in the West Elsdon neighborhood. Among other duties, she cooks, cleans and pushes his red wheelchair from appointment to appointment, to swimming classes and to the adult day care they go to daily. Salvador Campos, nicknamed Chava, can be stubborn, she says. He regularly loses his teeth, wallet and other items. He doesn’t drive. He’s often tired. And things seem to be worsening, Martha Campos said. He fell down a flight of stairs just last month trying to fix something in their attic. “He’s like a baby,” Martha Campos, 63, said as tears welled up in her eyes. Caretakers like Martha Campos and her daughter, Martha Christina, 43, provide millions of hours of unpaid care for their loved ones with Alzheimer’s and dementia, the Alzheimer’s Association notes. There are an estimated 590,000 caretakers like this, and many often report stress and anxiety resulting from this work. On the pages of online Alzheimer’s disease support groups for caregivers, many relay their daily difficulties: sleepless nights, challenges getting a mother to change her underwear, a father-in-law who keeps pulling the fire alarm at his assisted living facility. “I hate this disease that is taking my mom and turning me into a person I don’t recognize,” one frustrated poster recently wrote. Latino families are unlikely to put a loved one in a nursing home or assisted living facility, said Marquez, whose father has Alzheimer’s disease. But when dealing with a disease that worsens over time, this approach can be ill-advised. “The thing about Alzheimer’s disease is that it’s progressive and it’s degenerative,” Marquez said. “So in the beginning, it might be easier — even though it’s not easy in any sense of the word — but easier to care for that person. But things are going to get worse.”
Offering resources
Constantina Mizis, founder of the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA), says frustration is a common complaint from caregivers. Her grandmother’s struggle with dementia prompted her to start an organization, almost a decade ago, for families taking care of someone with a memoryloss disorder. Then, Mizis and her staff, working out of one office, helped connect area Latino families dealing with Alzheimer’s disease or other dementia to resources. Their mission is the same today, but they have since grown from that office in Melrose Park, opening centers in Pilsen and soon in Cicero. “We opened in 2009 with zero — nothing,” said Mizis. “Just with the anxiety of losing my Mexican grandmother.” Four days a week, LAMDA coordinates music and dance therapy programs for elderly caregivers at the Sharps Community Center in Melrose Park. Participants, who call themselves “Los Clásicos,” dance and do karaoke. It’s a widely popular program, Mizis says, with up to 50 participants each session belting boleros and Lola Beltrán. Others dance, their flair and vigor belying their age. Though Alzheimer’s disease is a challenge for families, experts suggest the experience can bring families closer, building resilience. Martha Campos says her husband’s illness has been polarizing for the family. She remains hopeful, though. As long as she is able, she will take care of him, she said. “There’s people who ask me, ‘Why don’t you put him in a (home)?’” she said. “But a nursing home doesn’t solve the problem. We take better care of him at home. “I don’t have the heart to leave him there,” she adds, crying. Even though he can be grumpy and stubborn, she said, he is still her “gran amor” — her greatest love.