Caregiving is a multigenerational effort for many Latino families
When Reyna Bustamante’s mom, Paula Tapia, was diagnosed with Alzheimer’s disease in 2004, the news was shocking. But after some initial reluctance to accept the diagnosis, Reyna and her siblings realized that their mother required more care than her father could provide alone. They decided to make a plan to help.
“We got together and started to ask each other, ‘What time can you come to do this?’ ‘Can you come to help Dad bathe Mom?’ ‘I can take her to this, can you take her to that?’” says Reyna, speaking through a translator.
Over the years, most of the day-to-day support became a shared responsibility between Reyna, her brother, Juan, her sisters, Cecilia and Francisca, and her niece, Veronica, who all live in southern Arizona. But all eight of Paula’s children — and an extensive network of grandchildren — have stepped up to contribute to her care in some way.
“We all collaborate,” Reyna says. “For example, we take her to the doctor, bring her medicine from the drugstore, run errands and bring her food. All of us work as a team. Thank God we’ve been able to be together in all of this.”
Caring across generations
Reyna’s family is not alone in their team approach to caregiving. While every situation is different, Latino families often team up across multiple generations to provide care for a relative living with Alzheimer’s or another dementia.
“Within the Latino community, you’re raised with the belief that grandchildren have a responsibility to respect and take care of their grandparents,” says Lorena Verdugo, community health coordinator and Ventanilla de Salud coordinator with the Mexican Consulate in Tucson, Arizona. “A lot of younger people in our culture have been raised by their grandparents, and so they naturally assume the caregiver role as adults.”
Caregiving for a person living with Alzheimer's or another dementia can be challenging, so it's important to ask for help. We have information about in-home care, respite care and other options to suit your family's needs.
Multigenerational caregiving has benefits for everyone involved. Verdugo says that younger family members are typically more comfortable using technology and can assist older family members with video appointments, accessing online medical records or doing research to learn more about a disease or possible treatments.
Having multiple family members involved in providing care creates a built-in support network that can combat stress and prevent any one person from feeling overwhelmed. It also gives caregivers a sense of personal fulfillment to be able to give back — a sentiment that rings especially true for Reyna and her niece.
“For me, it is vital to take care of my mom because I’m giving her the love that she gave to me when I was a girl,” Reyna says. “[My niece] Veronica feels grateful to my mom because my parents were also the ones who raised her, so she feels like one of their daughters. Caring for my mom is a way for us both to give back.”
Other sources of support
According to Verdugo, Latino families may also prefer to care for loved ones as a family due to a distrust of outside resources stemming from cultural factors, language barriers between professional care providers and people living with dementia, and possible negative experiences families have had with immigrating to the United States. An important way to combat this issue is through promotores, or community health workers. These individuals are respected community members who play many roles — often serving as connectors, mentors, counselors, health advocates and educators.
“Promotores might inform a family about risk factors, the difference between Alzheimer’s and [another] dementia, or help them understand the symptoms and recognize what those look like,” Verdugo says. “They also help by knowing what community resources are out there and making referrals.”
Learn more about how promotores provide information and education about Alzheimer's and all other dementia.
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The work of promotores is even more important considering that Hispanics are about one-and-a-half times as likely to have Alzheimer’s or another dementia as older Whites.
“Promotores are truly champions in our pursuit of health equity,” says Carl V. Hill, Ph.D., MPH, chief diversity, equity and inclusion officer at the Alzheimer’s Association. “These trusted individuals connect families with diverse sociocultural backgrounds to vital Alzheimer’s care and support resources.”
A bonding experience
Aside from her mother’s doctors and a housekeeping service, Reyna and her family have not sought outside help for Paula’s care. For the time being, relying on her family has been a positive experience that has only strengthened their bond.
“We have always been close, but going through all of this has brought us even closer,” Reyna says. “In making decisions together for my parents, it has united us as a family.”