How a program to support Latino caregivers may have discovered a new wave of patients

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.

ROCHESTER, N.Y. — Karol Suárez, 41, knows how hard it can be for some people to get the mental-health care they need. Sometimes it even requires family members to lie to their loved ones.

In 2019, Suárez was at a mental health conference to talk about her work as a community health worker – or health promoter – for the Chicago-based Latino Alzheimer’s and Memory Disorders Alliance (LAMDA), which supports Latinos with cognitive diseases like Alzheimer’s and dementia.

She was washing her hands in the bathroom when a woman approached her and said this was the only place they could talk freely.

The woman had brought her husband to the conference under the guise that the event had nothing to do with mental health. The woman’s husband refused to get help for his memory problems, in which Suárez specializes. The woman begged Suárez to talk to him.

Suárez’s work with LAMDA, which involves going directly into the community to survey Latino family caregivers about their loved ones, is persuasive. After she finished her presentation, the man came up to her and said: "I need help."

The alliance’s efforts hold promise for reaching and helping Latino communities in Western New York that are under-served, isolated or historically comfortable with family and cultural traditions regarding caregiving that can exact great burdens on some caregivers.

Its work to date has unearthed some stunning findings regarding memory loss – not among those needing care but among the family caregivers themselves.

Along the way, LAMDA has assisted hundreds of families, leading to steps underway to provide quantifiable measurements of its reach and effectiveness. The hope is that this approach could be broadened to other communities nationwide.

Among obstacles to such expansion: funding, the need for training community health workers and the availability of bicultural individuals likely to become successful health promoters.

Reaching deep into the community

Constantina Mizis, a former health care worker, founded LAMDA in 2008 to support family caregivers as much as the loved ones they care for. As a Mexican immigrant who cared for her mother, Mizis wanted to fill a void in her Chicago community.

Through a 2018 grant from the federal Administration of Community Living (ACL) within the U.S. Department of Health and Human Services, LAMDA has established a group of 60 health promoters. Their task is to reach into the Latino community to administer memory exams, educate families on memory-related issues and connect people to diagnosis and treatment and whatever support they need.

The exact amount of grant money going to LAMDA could not be learned. Its funding was part of a $17 million grant serving 15 agencies in four different states, records show.

LAMDA’s goal is to reach 15,000 people in three years. As the effort begins its third year, it has reached 7,000 people to date.

The goal of 15,000 was set for the 2018 ACL grant, with LAMDA counting how many memory exams it performs, how many Latinos are educated about the risks of Alzheimer’s disease and about prevention methods, and how many persons are provided caregiver education.

LAMDA leaders say the coronavirus epidemic over the past 10 months has slowed progress in reaching these goals. For federal officials, it’s not about whether they reach that exact 15,000, but that sufficient data are gathered to show that the program works and is worth investing in.

"Everybody is being evaluated with the expectation that they will have enough evidence that what they’re doing works, and it’s helping people. And with the data, they can go to other providers (private, philanthropic, and government)," said Erin Long, team lead at the Alzheimer’s Disease Programs Initiative, part of the Administration on Aging at ACL, which funds the program.

From there, "they can embed these skills into the community," she said.

Similar efforts have been tried in Rochester, but community health experts say those programs haven’t been effective because they didn’t find a way to truly connect with the Latino community.

Chicago-area Latino caregivers found to have memory loss themselves

The backbone of the Chicago-based program is the use of memory-health surveys, which can uncover who might need treatment or other kinds of support. That support could include social experiences that can help keep body and mind active and, thereby, healthy.

The evaluations are then sent to the Sinai Urban Health Institute in Chicago for analysis and for tracking of several factors that will measure the effectiveness of the program. One item being tracked is any increase in doctor visits — an important step in a culture known for wanting to "take care of their own" rather than seek medical care.

Something unexpected happened as the survey analysis proceeded. In households where a family member serves as a caregiver, both caregiver and elder fill out the memory surveys. The Sinai researchers tabulating results thought a mistake had been made because it seemed the elders’ responses were appearing where the caregiver responses should be.

In fact, what the data showed was that family caregivers were also showing signs of memory problems — in alarming numbers. That discovery will be significant in identifying the next wave of the Latino community that will need treatment and support.

This is no small thing:

  • A survey by the Diverse Elders Coalition found that 31% of Latino family caregivers, many living in multigenerational households, reported their efforts taking a toll on their own physical and emotional health.
  • A 2016 University of Southern California study predicts that the number of Latinos with Alzheimer’s will increase from 379,000 in 2012 to 3.5 million by 2060 — a growth of more than 800%, far beyond predicted increases in the general public.
  • A report on the study noted that "U.S. Latinos are 50 percent more likely to get Alzheimer’s than non-Latino whites," yet are less likely to receive a diagnosis or participate in clinical trials that can help lead to effective treatments.

Any effort to connect Latinos who have memory diseases with clinical support can help address this disparity in wellness and care, experts say.

Meeting cultural needs, not simply medical ones

The LAMDA program requires significant training — and funding that has not always come easily.

“The hardest thing for a nonprofit is not having the funds," Mizis said. "If you don’t have the years of credibility, they don’t grant funds, no matter how good you are."

LAMDA didn’t obtain its first federal award until 2018, a decade after the organization was founded.

A key element in that success has been a partnership with Univision, the second-largest Spanish-language news organization in the United States.

Having Univision on board helped with LAMDA’s biggest initial obstacle, which was establishing themselves as a credible organization worthy of funding.

“In the beginning, we already had the elders and caregivers, but we just didn’t have the funds," Mizis explained. "We began to make partnerships with hospitals and clinics, in the neighborhoods where we wanted to educate people, to lend us their spaces.”

The program also requires extensive training of the health promoters who handle the evaluations. They need to have up-to-date information on the disease, and they need to attain a high level of cultural competency in order to gain the kind of trust needed to make the interventions successful.

Mizis also needed resources to exist in Spanish and to cater to the cultural needs of the people, not just the medical ones.

“All my promoters have to be bicultural," Mizis said. "They can’t be just Hispanic or just American. They need to speak the medical language in English and translate it in a way that is culturally sensitive.”

That takes time, effort and a big enough pool of capable individuals for the role. Not everyone who might be a good fit for the sometimes-temporary role of health promoter is in the position to take on that kind of work.

From fairs to consulates

Health promoters like Suárez are required to go deep into the community.

"One of the big things that the community health workers do is go to health fairs as trusted members of the community and make people aware of the risk of dementia," Long of the Alzheimer’s Disease Programs said.

But health fairs are just the beginning. Promoters visit nursing home lobbies, churches and even places like the Mexican consulate in Chicago — where LAMDA has a table — to provide memory tests and evaluations on at-risk elders.

According to Long, the health promoters aim to reach three types of people: those who need to be educated on memory health, those who are already caregivers (and who also take the memory test) and those who have already been diagnosed.

The health promoters provide resources so that those who have been diagnosed with Alzheimer’s can get the care they need.

Before the pandemic, LAMDA could offer singing lessons, Zumba classes, needle arts, musical therapy and even financial advice. The organization brought in experts to provide culturally sensitive activities and to conduct educational workshops so caregivers could keep up with medical developments.

At the center of the activity was Enrique Jiménez, Mizis’ husband. Jiménez is in charge of devising activities that are both entertaining and stimulating, such as talent shows and live music.

"There was this older gentleman whose Alzheimer’s was so advanced that he could not walk or talk much anymore," health promoter Suárez recalled. His caregiver would bring him to LAMDA’s dance lessons, and it became clear that the gentleman remembered how to dance.

So he was able to get up and move to the music, with a smile on his face.

"His caregiver was so happy because he was smiling and laughing," Suárez said. "She felt like he was living again."

She credits the socializing LAMDA provides with giving people coping with memory loss their self-esteem back.

LAMDA has also brought in doctors and nurses from partner clinics and hospitals to treat unrecognized problems like cholesterol imbalances and diabetes.

Having immigrated from Mexico herself nearly 30 years ago, Mizis understands firsthand why these services are essential.

“A lot of our people aren’t citizens and have limited English, so these services would otherwise be unavailable to them,” Mizis said.

Once the pandemic hit, such efforts shifted to virtual settings.

LAMDA has hosted workshops and musical therapy through Facebook live streams. Online Zumba classes are getting people active in their homes.

As for the health promoters, they continue to do their work, primarily through phone calls.

Expanding health promoters to other U.S. cities

Based on its progress in Chicago, Mizis has begun sending health promoters to Los Angeles and New York to educate people on memory loss and to train new health promoters there.

In October, the federal Administration of Community Living nominated LAMDA for expansion under the terms of the National Alzheimer’s Project Act. The goal: to replicate the health promoter program in other parts of the country.

In November, LAMDA presented its model to the National Advisory Council on Alzheimer’s Research, Care, and Services. This panel makes national recommendations to improve care and services and chose LAMDA’s model as a possible way to do just that.

Among the evidence of progress, according to details of the presentation posted on the U.S. Department of Health and Human Services website:

Progress toward meeting the objective of identifying Latino adults living alone with Alzheimer’s disease or the risk of it and expanding the capacity of in-home and community-based dementia services of Latino providers:

  • 60 health promoters in suburban Chicago informed nearly 6,900 Latino individuals about care options;
  • 710 memory screenings were offered in one year for Latinos, with those whose screenings pointed to the need for diagnosis and care encouraged to see a physician;
  • Health promoters encouraged nearly 520 people to see a physician for diagnosis or treatment.

Progress toward offering and conducting evidence-informed intervention for at least 300 Latino caregivers:

  • 60 health promoters trained to provide a four-week family caregiver skills program adapted for adult Latino family caregivers.
  • Educational sessions provided to 107 Latino caregivers.

And in the half-year before COVID-19 disrupted society, the program served eight Latinos living alone with Alzheimer’s or related diseases, 571 Latinos living alone at risk of such conditions and 84 caregivers of a Latino with or at risk for those conditions.

The Advisory Council last month was looking into long-term services and support that include home care, day care and caregiver education, the last of which is a significant area of LAMDA’s focus.

"I wanted to show those who were watching the council meeting that there are good models out there that enable people from diverse backgrounds to have access to services," said Debra L. Cherry, executive vice president at Alzheimer’s Los Angeles and a member of the Advisory Council.

Of Mizis’ efforts, Cherry said, "It’s a nice model because she has a trained group from that community that can speak to families about what are existing services to help them and how they can access them."

Cherry cited metrics the advisory council is studying to gauge LAMDA’s level of success.

"You look at the baseline, how many people you have reached, how many more services that are bilingual have you helped to create, how many have connected to the services and how many of these are satisfied," she said.

For Cherry, it’s not simply the reach but the level of satisfaction among those reached that matters greatly.

"They have a better chance of explaining services to their own community members in a way that can stick," Cherry said of LAMDA.

A partnership with the Urban Health Institute at Sinai will bring a final evaluation of the program when it concludes in October 2021 (Sinai is not issuing any results before then.). But people like the Alzheimer’s Disease Programs’ Long who have tracked the progress are optimistic.

How Rochester could benefit

Phyllis Jackson, community wellness project manager at Common Ground Health in Rochester, said caregiver needs are similar nationwide: support, respite and education. But how those things are provided makes a difference.

Programs similar to LAMDA’s have been attempted in Rochester before, and the resources are present, Jackson said. But a lack of racial and cultural competency have prevented them from succeeding or reaching the people meant to be reached.

The need would appear to be substantial in Rochester. Monroe County is home to roughly 60,000 Latino individuals. Most come from Puerto Rico, with several thousand having arrived after Hurricane Maria devastated the U.S. territory three years ago.

A lot of organizations don’t respond specifically to the cultural needs that caregivers of color face, she said. What’s needed, she said, are members of diverse communities providing the support caregivers need.

Told about LAMDA, Jackson expressed interest.

"What I loved about LAMDA is that it’s by Hispanics for Hispanics, and they understand the needs and provide for them in a way that makes sense for that specific community," Jackson said. "In Rochester, the services are here, but how do we make them relevant to the people we want to serve?

"How do we reach the people we want to reach?"