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Even as Latinos face largest increase in Alzheimer’s-related illnesses, they are less likely to seek treatment. Their caretakers, often family, need support, advocates say.
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Even as Latinos face largest increase in Alzheimer’s-related illnesses, they are less likely to seek treatment. Their caretakers, often family, need support, advocates say.

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Laura Rodríguez Presa  Chicago Tribune

Jose Aguilar, center, dances with his caretaker Patricia Davila during dance and song therapy at Latino Alzheimer's and Memory Disorders Alliance in Cicero on July 22, 2021.

Two photos of Mexican actress/singer María Félix hang on Judith Rocha’s wall. The painted profiles of Félix’s image was done by Rocha and her mom Socorro Rocha, as part of a Sip & Splash event years ago after Socorro was diagnosed with Alzheimer’s disease.

It’s a moment that Judith remembers fondly — due to the excitement her mother expressed following the art activity.

In 2016, Rocha, a licensed clinical social worker and assistant professor at Northeastern Illinois University started facebook.com/LaBrochaChicago, a group that puts art therapy at the center for people 60 and older with Alzheimer’s, Parkinson’s and other types of dementia and their families. She wanted to help other caregivers have an experience like she did with her mom.

“We’ve seen that elders really want to have an opportunity for self-expression and that whole community building aspect is integrated into that, and it’s just a beautiful experience for us to have a following now,” she said.

The number of those 65 and older with Alzheimer’s is projected to nearly triple by 2060, according to the Centers for Disease Control and Prevention and the National Institute on Aging.That’s because U.S. Latinos are 50% more likely to get Alzheimer’s than non-Latino whites, a study by the University of Southern California suggests.

But even as Latinos face the largest increase in Alzheimer’s disease and dementia-related illnesses of any racial/ethnic group in the United States, they are less likely to get a diagnosis or seek treatment, advocates say. Early detection, awareness, and access to cultural resources can help improve the quality of life for those with Alzheimer’s and their families.

“The number one risk factor for Alzheimer’s disease is age, so the older we get, the more our risk of Alzheimer’s goes up,” said David Marquez, a University of Illinois at Chicago associate professor of kinesiology and nutrition and leader of the Latino Core of the Rush Alzheimer’s Disease Center.

Another reason Latinos face a greater risk of developing Alzheimer’s and dementia is because the group tends to suffer from chronic diseases such as diabetes and high blood pressure at higher rates than other ethnic groups, and, “if you have chronic diseases, you have a slightly increased risk of Alzheimer’s disease down the road,” Marquez said.

Marquez says symptoms of dementia-related illnesses are those things that interrupt one’s regular, daily activities.

‘It’s a family disease’

In many Latino families, the lack of economic resources and language barriers — but also because of strong family ties, spouses or the children tend to become the primary caretakers of their loved one suffering from Alzheimer’s, said Constantina Mizis, founder and executive director of the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA).

LAMDA is a nonprofit organization based in the Chicago area that works to educate and engage Spanish-speaking Latino caregivers by providing skill-building training and support programs.

Mizis says that the caregivers are often left behind or ignored in the process even though caring for a loved one with dementia or Alzheimer “is extremely heartbreaking and difficult.”

“It can really disrupt the whole family and their quality of life; it’s like a domino effect after the illness is detected,” Mizis added, “sometimes those caring for the loved one must leave their job to care for them, which then causes economic hardship and thus more stress and trauma. It’s a family disease.”

A recent survey by the Diverse Elders Coalition found that one-third of Latino family caregivers feel that their efforts affect their physical and emotional health, including depression. Many also report feeling unprepared, resulting in isolation and separation from social life.

That’s because familism is a central cultural value of Latino communities; It entails dedication and commitment to the family so when someone in the family is affected by Alzheimers and related dementia, caregiving is described as “something that just needed to be done — not merely the ‘correct’ thing to do,” the survey says.

Often, the caregivers don’t have support or even the knowledge necessary to deal with their loved one as the illness progresses, Mizis said.

She added that this is a specifically important time to recognize the caregivers’ work and their needs because the pandemic exacerbated their struggles. Since their center in Cicero reopened about two months ago, “the need for support is evident, for both, the caregiver and their elders,” she said.

Seven of their senior members died in 2020, “Most of them passed (because) of COVID-19 complications,” said Reyna De Jesus, the outreach coordinator of the center at 6112 W. Cermak Road in Cicero.

Many others have returned with severe anxiety, depression and other health complications.

De Jesus works with a team of community health workers that have taken to the streets to raise awareness of the way Alzheimer’s is hitting the Latino community and invite them to attend their activities.

While not all of their members have dementia or Alzheimer’s, the objective of the organization is to help those seniors who may be at risk and their loved ones.

Aside from memory screenings and other health screenings provided at the center, the organization focuses on the therapy programs they offer — all in Spanish and culturally relatable to cater to immigrant seniors in the Chicago area.

“We need to take care of the caregivers so that they can stay strong,” said Mizis.

‘Dancing and singing have the power to heal’

Patricia Davila Garcia has been taking care of 93-year-old Jose Aguilar for nearly seven years. He has dementia.

Though she is not a biological family member, she has known the family for many years and considers the Aguilars as family, she said.

Three years ago she learned of LAMBDA and “it was as if I finally found someone who understands me,” she said.

The organization has served as a support system and a learning center as “Don Jose” as she calls him, gets older and his health deteriorates.

But even as Don Jose aged, his semblance changed after she began to take him to singing therapy at the center.

At first, he just sat and watched, then one day Don Jose got up and began dancing to a song he recognized from his youth, Davila said.

“Dancing and singing have the power to heal,” said Enrique Jimenez, director of programming at the organization.

Every Tuesday and Thursday Davila takes Don Jose to Danzón, where seniors dance to their traditional music as a form of therapy, and he also attends Café Karaoke, singing therapy, where they each have a turn to sing their favorite song.

The karaoke is the crowd’s favorite, said Jimenez.

“Many get to sing their favorite songs and remember their youth,” he said.

The other programs they offer include crafts and Zumba exercises. Each program is designed to serve as therapy.

Jimenez says that the activities they offer such as singing and dancing can lift the senior’s confidence, which lifts their spirits and makes them feel better. The exercises also help them to develop patience and learn breathing techniques. Most recently they began teaching the seniors to use cellphones and iPads to access their programs virtually.

Davila says that it makes her feel happy to see Don Jose smile during the karaoke session.

“I know he won’t remember it when we get home, but for that hour we truly enjoy life,” she said.

Mizis said that regardless of family history all aging Latinos are at risk of developing Alzheimer’s and it is important to stay vigilant for their own health and the health of their loved ones.

“If you suspect that someone you love has a problem, face it,” she said. “It’s inevitable and there is no cure, but many of us can help you deal with it.”

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