Jose Maria Burruel was born in his grandmother's home, a tent that sat between a ditch and a drainage canal on the outskirts of Phoenix. He says the family was fortunate to find a black physician to help with the birth. At that time, he says, local white doctors wouldn't deliver Latino babies.
Now, at 84, the retired educator says he is helping improve medical care for other Latinos by participating in an Alzheimer's study at nearby Barrow Neurological Institute at St. Joseph's Hospital and Medical Center. He's encouraging friends to do the same.
"We all have an obligation to contribute to the betterment of generations to come," says Burruel, a great-grandfather and World War II veteran.
For more than a decade, Burruel, his wife, Frances, and friends from his old neighborhood high school, Phoenix Union, have been gathering at local restaurant Bit-zee Mama's for comfort foods and company. The group of roughly 100 affectionately calls itself "El Grupo."
More recently, after Burruel invited a Barrow doctor to speak at a get-together, about 20 El Grupo members decided to join Burruel in an Alzheimer's study.
Barrow clinical neuropsychologist Leslie Baxter says El Grupo participants are giving researchers a unique opportunity to better understand how cultural factors influence aging and Alzheimer's in the Latino community.
"We just know so much less about how Latinos age than how Caucasians age," Baxter says.
According to the Alzheimer's Association, 5.3 million Americans have Alzheimer's disease, a form of dementia that slowly erodes memory and ends in death. Maria Carrillo, senior director of medical and scientific relations at the Alzheimer's Association, says about 200,000 Latinos have Alzheimer's, and the figure is projected to increase 600% by 2050.
Conditions affecting Hispanics
A growing number of studies point to cardiovascular disease, high cholesterol, high blood pressure and diabetes -- all conditions that affect Hispanics at high rates -- as factors that may increase the risk of Alzheimer's for Latinos, says Carrillo, who notes that Alzheimer's symptoms begin, on average, almost seven years earlier in Latinos.
Burruel, who has not been diagnosed with Alzheimer's, visits Barrow once a year and takes a battery of cognitive tests, which he says are taxing. He says some El Grupo members are hesitant to jump on the research bandwagon.
"You have to push people. It takes time out of your life, which we're at the short end of now," he says with a chuckle. "Latinos are very private. We don't like things that invade our life, our sanctuary."
For many, there's also a taboo associated with the illness, says Yanira Cruz, president and CEO of the National Hispanic Council on Aging. "There's a shame in admitting that a family member has dementia," Cruz says. "It's very hush-hush."
The downside of that denial is that diagnosis is delayed, and patients miss out on therapy that could ease symptoms, says neuroscientist Carrillo.
"To some extent it's a very cultural issue. We don't want to disrespect our elders in any way by intimating that they are not as sharp as they can be. They're the boss," says Carrillo, whose mother-in-law was diagnosed with Alzheimer's three weeks ago. That was after years of Carrillo urging the family to get her evaluated.
Arturo Flores, 38, pressed his father, Ricardo, 67, to see a doctor after memory problems that began six years ago became pronounced.
"I pushed him into the car, and he's bigger than me. I said, 'You're going to the doctor.' To this day, he says there's nothing wrong with him," Flores says. He now shares with his mother the tasks of bathing, shaving and dressing his father each day.
But Ricardo Flores' road to diagnosis was long. His longtime employer, a nickel-plating business in Los Angeles, did not offer health insurance. Flores drove his parents to see a family physician and neurologist in Tijuana, Mexico, who suggested that job stress was affecting his memory.
Many months later, after the family enrolled Ricardo in a research study in Los Angeles that provided free health care, he was diagnosed with Alzheimer's. But he eventually pulled out because of the long hospital stays and invasive tests required. He now qualifies for Medicare.
Strategies that can help
Researcher Baxter believes there is much to learn from Latino caregivers, like Flores, about acceptance, patience and respect; strategies that could help other families coping with dementia.
Cruz says better access to medical information in Spanish and more local senior health centers, where staffers understand the culture, would give families the support they need. Getting recommended medical screenings and adopting healthful habits earlier also would boost disease prevention, she says.
But, Burruel says, there are some things Latinos may never be willing to do for the sake of furthering the community's health care. Barrow researchers ask study participants to donate their brains to a brain bank after they die.
"I'm wavering on that one," he says. "We Hispanics want to leave the way we came in."
To see more of USAToday.com, or to subscribe, go to http://www.usatoday.com
Copyright 2009 USA TODAY, a division of Gannett Co. Inc.