‘I am not alone:’ How a California county is helping Hispanic family caregivers find peace
Editor’s Note: This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about responses to social problems. The group is supported by the Solutions Journalism Network.
The collaborative’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.
Through 27 years of marriage, Amalia and Félix Santiago have taken care of each other. The devotion, in their eyes, is a duty. It is what they vowed.
When Félix Santiago, 84, started showing signs of dementia two years ago, his wife took notice. He could not remember the names of movies a half-hour after watching them. He forgot his address and his phone number.
"When you see the person you love going through those things, you feel so impotent," Amalia Santiago said. "It’s heartbreaking."
The Santiagos, an elderly Latino couple living in California, are part of a demographic that is often hard to reach for service providers seeking to help caregivers.
And that demographic is growing.
In 2018, the Center for Disease Control found Latinos and Black Americans are the ethnic groups most at risk of Alzheimer’s. By 2060, 3.5 million Latinos are expected to be diagnosed with the disease.
As the number of Latino family members caring for aging loved ones climbs, caregivers in those households face barriers to resources and support. They often cite language, culture and distrust of outsiders as reasons that them isolated and overwhelmed.
An innovative program in the Southern California community of Santa Paula, La Buena Vida, is breaking down some of those walls by working with Spanish-speaking professionals who convince caregivers, including Amalia Santiago, that it’s OK to ask for help.
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The first-of-its-kind program in California serves as the Ventura County Area Agency on Aging’s resource center for Spanish-speaking family caregivers. The resource center uses federal funding to connect caregivers from Latino households with services like respite care, training, and support groups in Spanish.
Some who spoke about the program said they are concerned it is not well-known enough by the people who need the resources most. COVID-19 has hindered La Buena Vida’s outreach efforts, which are more effective in reaching Latinos when they happen face-to-face.
As the Ventura County program grows, it also will need to contract with more bilingual providers to increase its reach in the area’s Latino community.
The growing need to provide help is shown in a 2020 National Alliance for Caregiving and AARP report. It revealed Hispanic caregivers feel their role gives them a sense of purpose, but they have the fewest caregiving resources and information in comparison to other racial and ethnic groups.
The report also found Hispanic family caregivers are more likely to be in higher intensity situations — meaning they often provide more care — while struggling with lower incomes and often having poor or no health insurance.
Communities looking to try this model to help Latino caregivers would need to apply for funding through the federal Older Americans Act and establish a partnership with an organization w a bilingual staff that can provide the necessary services.
Help for Latino caregivers in Southern California
Amalia Santiago, who immigrated to the United States from Honduras in the 1970s, found a way to help her husband through a caregiver program in the small Southern California community of Santa Paula, which is 66 miles outside of Los Angeles.
Called "La Buena Vida,” the program provides safety equipment and respite care, offers a support group and connects caregivers to people who are trained to listen, like social worker Aracely Garcia.
"It’s like she brought so much that I lost. Which is hope," caregiver Santiago said of Garcia.
The program has undergone a few changes since it began five years ago. Catholic Charities leaders in Ventura County created a new initiative to overcome barriers faced by people who are caring for spouses, parents or other relatives. They launched a Family Caregiver Resource Center aimed at gaining the trust of Latino caregivers, many of whom speak only Spanish.
One of the first of its kind in California, the program offered care, services and a wide range of supplies, from adult diapers to wheelchairs.
When Catholic Charities decided not to renew its grant in 2018, the Ventura County Area Agency on Aging kept the program running, rebranding it as ¡La Buena Vida! Centro de Recursos para Cuidadores Familiares (Family Caregiver Resource Center).
Garcia, who helps run La Buena Vida, said efforts center on letting overwhelmed caregivers know they are not alone.
"There is help out there," she said. "There is light at the end of the tunnel."
La Buena Vida stands out because it is aimed at helping caregivers who face language barriers and who often are reluctant to accept outside help. Two women — García and program director Sonia Vaughn — run the program and work to determine what services caregivers might need.
"While doing case management, there are times you discover new barriers. So, you have to determine what other areas you can assist them with," said Vaughn.
Garcia tracks the program’s 66 clients, checking up on how they are doing and what changes need to be made. She said COVID-19 stopped home visits aimed at assessing the barriers caregivers face, but the visits could be resumed as more people are vaccinated against the virus.
La Buena Vida refers clients to a partner organization, Santa Clara Valley Hospice, for caregiver training, counseling and other services.
Many family caregivers are burned out by responsibilities that never stop and desperately need a break, said Garcia.
La Buena provides trained Spanish-speaking respite care providers who allow caregivers to leave the house.
"You can ask for respite to go to church, or shopping, or to get your nails done or run some errands," Vaughn said.
La Buena Vida is funded with about $222,000 a year through the federal Older Americans Act.
Program leaders said $119,000 is spent for salaries and benefits of staff members who provide outreach, education, and case management. The rest goes to contracted partners who provide services including respite care, safety equipment including grab bars and ramps, caregiver training, and a support group.
Vaughn said many Latino caregivers, and the people they care for, are skeptical about having a stranger come into their home to provide care. The fears often diminish after families give the substitute caregivers a chance, she said.
Respite care helps Santiago get things done without leaving her husband by himself, the caregiver said. She can get errands done and visit the family caregiving support group that the Santa Clara Valley Hospice provides in Spanish.
"A lot of the people there are in the same situation as me, some worse and some better. But it gives me a chance to talk, and I feel the moral support, and I can get things off my chest," Santiago said.
La Buena Vida also connected her with a psychologist for counseling services.
"You realize you’re not the only one going through these things. I feel calmer, less stifled," she said.
Observers praise efforts to help Latino caregivers but worry that not enough families know about La Buena Vida. They said the COVID-19 pandemic has complicated efforts to reach out to families at places of trust, such as churches, community centers and doctor’s offices.
"The most important outreach is one-on-one," said former social worker Connie De La Rosa, who helped found the original Family Caregiver Resource Center in Santa Paula. She noted that setting up booths at events is not enough to expand the number of people who obtain support services.
"It can’t be from behind a table because people won’t come to your table," she said.
The program currently serves 66 clients. It is designed for a far larger population that includes Latino caregivers who don’t speak English across a county of 846,000 people. Program leaders say they will need to contract with more bilingual providers as La Buena Vida grows but are already planning for the challenge by seeking partners who can hurdle language barriers.
"We have zero indication that will be a problem," said Jannette Jauregui, spokeswoman for the Area Agency on Aging.
How Rochester could benefit
The city of Rochester is home to over 40,000 Hispanics, and Spanish is the most common language outside of English in the city and county.
But with little resources available in Spanish, and hesitancy among Latino caregivers, programs like La Buena Vida could benefit Rochester’s Hispanic caregivers.
Ibero American Action League’s Centro de Oro, in the city’s downtown, has served the community for about 30 years. It provides programs that focus on wellness, nutrition, socialization and meals.
Hispanic family caregivers in Rochester rely on other private organizations for resources. Raquel Serrano, who runs Centro de Oro, said that there is "an overwhelming need" for caregiving resources in Spanish for Rochester’s Hispanic population.
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Meanwhile, Lifespan, a senior health services provider in Rochester, does have some bilingual Spanish speaking staff, but there is room to do better, said Katy Allen, director of Lifespan’s Finger Lakes Caregiver Institute.
"We know we’re not doing enough … but we are making sure that services are accessible for everyone and appropriate to diverse cultures," said Allen.
For her, bridging the gap between Hispanic family caregivers and the resources they need starts at the hiring level. She is hoping that several vacant positions in the organization are filled by bilingual, Spanish-speaking members of the community, Allen said.
In 2020, Common Ground Health’s Phyllis Jackson said a lack of racial and cultural competency have prevented programs aimed at reaching caregivers of color from succeeding in Rochester.?
"We need to have people of color and people who represent caregivers at the table of the organizations that provide these services," Jackson said.
Dr. Elizabeth J. Santos, director of a geriatric psychiatry fellowship program at the University of Rochester, said it’s not that most existing organizations in Rochester might lack cultural competence and diversity, but many people in communities of color do not reach out for services.
"A lot of time when you’re a caregiver, you’re so overwhelmed with caregiving, you don’t even have time to see what’s out there," Santos said.?
Back in Santa Paula, Santiago, who lives with her husband in a mobile home, said she found La Buena Vida through a friend.
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Even with the added resources, she still struggles to cope with the realities of being a primary caregiver. Santiago said she would blame herself if anything happened to her spouse.
But the program has made her realize she cannot care for him without support.
"I’ve found that I have to take care of myself because, as my husband’s caregiver, if I’m not well, he won’t be well."