En español | When Francisca Terrazas was diagnosed with Alzheimer’s disease in 2007, her family never considered placing her in a nursing home.
“I sometimes wish there were a different way to care for her,” wrote daughter Beatriz in an essay penned for the October 2010 Shriver Report: A Woman’s Nation Takes on Alzheimer’s, “one that doesn’t cost me work time and wages to be with her, one that doesn’t involve laying my own wants aside for her needs. Then the Mexican in me says, ‘Remember where you come from. She’s your mother, an elder. Familia is about stepping up to the plate. Now just go do it!’ ” This tight-knit family viewed taking care of their mother as a cultural imperative.
They’re not alone. Hispanic families across the country are grappling with the issue of Alzheimer’s and what to do as caregivers for loved ones with the debilitating disease.
Nearly a quarter-million Hispanics — and more than 5 million Americans — have Alzheimer’s disease, according to the Alzheimer’s Association. The group’s Shriver Report spotlights the disease’s impact on women, especially the 11 million family caregivers across the country. Women are at the “epicenter” of Alzheimer’s, according to the report: Two-thirds of people who suffer from Alzheimer’s, and nearly two-thirds of their caregivers, are women. And the disease has a disproportionate impact on Hispanics, who, because of increased risk factors such as diabetes, are 1.5 times more likely to get the disease than non-Hispanic whites.
“We need more information out there in Spanish, and we need more people from the Latino community speaking out about the realities of Alzheimer’s, so that people understand what the disease is and what they can do to deal with it,” says Maria Shriver, a former journalist and current first lady of California, who became an Alzheimer’s activist after her father, Sargent Shriver, was diagnosed with the disease in 2003.
Hispanics are also more likely to care at home for a relative with Alzheimer’s than any other group, apart from Asian Americans.
Terrazas, 48, and her siblings have made arrangements, including adult day care and overnight care, that have so far allowed their 80-year-old mother to live in her home. The work is expensive and time-consuming. Terrazas, a freelance journalist, makes the 600-mile journey from her home in Dallas to El Paso several times a year to spell her younger sister, Angélica, their mother’s primary caregiver. “Anytime my mother needs anything, I know I can call on family,” Terrazas says. “Without that bond we had growing up, I don’t know that we would have that.”
That commitment to family is a strength of Latino culture. But caring for a loved one diagnosed with Alzheimer’s takes a heavy physical, emotional and financial toll on Hispanic families — particularly the daughters, daughters-in-law and other female relatives who do most of the caregiving.
And the strain will only increase. As the boomer generation ages, the incidence of Alzheimer’s is expected to rise dramatically.
That’s why outreach to Latinos is so vital, says Dr. Maria Carrillo, senior director of medical and scientific relations at the Alzheimer’s Association. “It is very difficult to talk about your loved one in a way that diminishes them, because you have a lot of respect for your elders and you don’t want to talk about them losing their memories or not having the capacities to continue being that matriarch and patriarch of your family,” she says. “At the same time we want people to know there are many resources available.”
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