Salvador Campos had his first stroke in February 1994, weeks ahead of his 49th birthday. It left the father of three unable to move and unable to remember the names of loved ones, including his parents.
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.
“ ‘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 six siblings with the brain disease. There is no cure.
Although diagnoses of Alzheimer’s are expected to increase as the senior population grows nationally, Latinos like Campos are 50 percent more likely to develop the disease than their white counterparts, said researchers from the University of Southern California. Between 2012 and 2060, the number of U.S. Latinos living with Alzheimer’s is projected to increase 832 percent — from 379,000 to more than 3.5 million, researchers said.
Despite this, experts say Latinos living with Alzheimer’s are less likely to seek treatment, often because of financial barriers or language and cultural barriers.
“This really is a problem,” said David X. Marquez, lead investigator of the Rush University Medical Center study. “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, Marquez said. Genetics, level of education, chronic disease and stress are all suspected factors, as is an inactive lifestyle and poor nutrition.
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, 63, has been his primary caregiver. The role has forced her to give up working outside their home. 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 said. He regularly loses his teeth, wallet and other items. He doesn’t drive. He’s often tired.
And things seem to be worsening, she said. He fell down a flight of stairs last month trying to fix something in their attic. “He’s like a baby,” she said as tears welled up in her eyes.
There are an estimated 590,000 caretakers like this. Latino families are unlikely to put a loved one in a nursing home or assisted living facility, said Marquez, whose father has Alzheimer’s. 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.
Constantina Mizis, founder of the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA), said frustration is common among caregivers. Her grandmother’s struggle with dementia prompted her to start the organization for families taking care of someone with a memory-loss disorder. “We opened in 2009 with zero — nothing,” Mizis said. “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 said, with as many as 50 participants each session belting boleros and Lola Beltrán. Others dance, their flair and vigor belying their age.
The performances, which sometimes include comedy sketches, are recorded and posted on a YouTube channel titled “Clásicos por los Clásicos.” In two years, the channel’s more than 1,000 videos have garnered more than 163,000 views. “When we get here, we forget any stress, anxiety or problems,” said participant Ruben Prado, 62. “This group has helped everyone. I have so many friends that had depression, and this group has helped them move forward.”
Salvador Campos says he is grateful to his wife, family and doctors for their patience. “Thanks to all of them, I’m still here smiling, waiting to die in another 30 years,” he said.
His wife hopes their experience can help other families. “It is important that people learn about this,” she said. “It is hard. This disease affects the whole family. Not just [a] couple, but also the children and the grandchildren.”