Latinos face largest increase in Alzheimer’s disease and dementia-related illnesses, summit to lessen stigma, provide resources
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Socorro Rocha , 84, had been working for years at her job when she noticed her paycheck was coming out lower even though her hours hadn’t changed. She brought up the discrepancies with her daughter, Judith. Human resources revealed that Socorro might not have been punching in and out on schedule.
Judith Rocha went with her mother to her next doctor visit, and after a series of tests that included a cognition exam, the then 69-year-old was diagnosed with dementia. That was August 2005. Socorro received an Alzheimer’s diagnosis in February 2006.
In hindsight, Judith recalls the few car accidents her mom was in because of peripheral vision loss, the food her mom cooked being saltier or her mom forgetting to turn off the stove after cooking.
“It was just connecting the dots,” said Judith, 44, a licensed clinical social worker, and assistant professor and director of the master’s of social work at Northeastern Illinois University. “Alzheimer’s, the word wasn’t even in my vocabulary. … I’d never seen it prior to 2005. For people dealing with cancer, the family seems to be more readily able and willing because it’s a physical condition. For a lot of people, when you say dementia and Alzheimer’s, they still think it’s a psychiatric condition. For many folks, it’s the unknown.”
It’s the unknown that the Alzheimer’s Foundation of America seeks to clarify with its free virtual Latino Healthy Brain Summit: Una Mejor Calidad de Vida (A Better Quality of Life) on Friday (July 23).
According to the Centers for Disease Control and Prevention and the National Institute on Aging, Latinos face the largest increase in Alzheimer’s disease and dementia-related illnesses of any racial/ethnic group in the United States — the number of those aged 65 and older with Alzheimer’s is projected to nearly triple by 2060.
Lakeview resident and Alzheimer’s Foundation of America board member Luisa Echevarria, 69, is excited about the presentations that will be offered in English and Spanish. Speakers and panelists like David Marquez, University of Illinois at Chicago associate professor of kinesiology and nutrition, and leader of the Latino Core of the Rush Alzheimer’s Disease Center (a prospective study that recruits and enrolls older Latinos without dementia who agree to annual, detailed clinical evaluations), are scheduled to participate. The goal is to empower the Latino community with information that can help people understand risks and warning signs, encourage them to get screenings, speak up about memory concerns and learn about area services available to help.
“There are many more older Latinos in the U.S. than in the past, so just by sheer number of older adults, you might expect to see an increase in the number of Latinos with Alzheimer’s,” Marquez said. “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. There’s also the link between chronic diseases such as diabetes and high blood pressure, where if you have chronic diseases, you have a slightly increased risk of Alzheimer’s disease down the road.”
Marquez’s father had Alzheimer’s. He died in 2020 at age 93. Marquez said he believes he lived with it for eight years, but his wife didn’t know he was diagnosed with it. Echevarria’s mother and grandmother both had Alzheimer’s — the latter showing symptoms in her 50s, her mother showing symptoms around 70. Marquez says symptoms of dementia-related illnesses are those things that interrupt one’s regular, daily activities or what is different from how it had been. For Marquez’s father, it was when his directionally savvy father started to ask how to get to places in the car.
“For him, that’s a change. That’s one of the key things, too, is it a change from how the person typically is,” Marquez said.
Echevarria noticed her grandmother repeating herself and no longer doing things that she loved to do, like embroidering and sewing. For her mother, it was changes in attitude and demeanor. Unlike her grandmother, Echevarria’s mother did art therapy and music therapy, and lived with the disease for about 14 years. Her quality of life was better after her diagnosis because she had those therapies and she was social, whereas her grandmother was very isolated because she had just come to the United States from Cuba and didn’t speak English.
“I know with my grandmother and even my mother, we have a tendency to sort of suffer in silence,” Echevarria said. “The families I worry most about are the families like mine. I want to make sure that newly arrived immigrants have a pathway to obtaining resources. Like everything else that is key to having a good outcome, a lot of this can be traced to health inequities in our country.”
Rocha recalls that even though she was trained and prepared to seek out resources as a social worker, it was difficult for her to find cultural resources in 2005 for her mom. What she did find wasn’t specific to her Mexican community, heritage or preferred language. Rocha said her mom languished for several years in an adult day care program in the south suburbs because they thought that was the only place available in their area to meet her needs. That was until Rocha learned about Casa Central’s wellness programs for seniors.
“We made the switch. It was like night and day. Mom went to that facility and on that first day she came home, she was chatty Kathy — it was amazing to see her just light up again,” Rocha said. “There’s music playing in Spanish, the gamut of the Latino communities are represented — Mexican, Puerto Rican, Colombian, Ecuadorian. She felt visible and engaged because they would do so many different activities that were more interactive and stuff that they actually like to do.”
Rocha said there’s been a steady decline in her mom’s cognitive abilities, but it hasn’t happened as rapidly as she’s seen with others with the disease. She likes to think that part of it is because her family caught the diagnosis early and the level of consistent care that her mom has received, including home care aides.
During the four-hour summit, participants will learn about cultural resources in Chicagoland for Latino families, as well as warning signs of memory impairment, tips for communicating memory concerns, importance of early detection and proactive steps to improve brain health. Rocha said being able to provide that education to her community and make them feel comfortable with the information can help make Alzheimer’s less of a mystery.
“At this point we still have folks that just want to keep their hands off of it, because they’re afraid that it’s going to be them in the future, and that’s exactly why you should learn more about it,” she said.
Realizing the lack of resources for the Latino community, Rocha in 2016 started the Facebook group facebook.com/LaBrochaChicago, which puts art therapy at the center for elders 60 and over, individuals with Alzheimer’s, Parkinson’s and other types of dementia, and their families.
“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. Rocha also created a Spanish-speaking virtual support group for caregivers of those with dementia-related illnesses called ANCLA, or anchor, in May 2020.
“For our loved ones when everything seems so mysterious and unknown to them, we’re that anchor that really holds them,” Rocha said. “This support group I hope is an anchor to them, to be able to just get them grounded and feel that there’s a community that they can depend on when they may feel there’s no one else, because I know I’ve been there and felt that many times, and still do.”
“We can’t say exercise prevents Alzheimer’s disease because you can do everything correct, so to speak, and still get Alzheimer’s disease,” Marquez said. “Sometimes people will have mild cognitive impairment, and it never progresses to Alzheimer’s disease. But others will have mild cognitive impairment, and it does progress to Alzheimer’s disease. Awareness and having information are important. It’s about reducing risk, and that’s where regular physical activity comes in, nutrition matters, trying to get good quality sleep is important. That said, we can can’t 100% make sure that we are not going to get it someday. Currently there is no cure.”
Register for the free virtual Latino Healthy Brain Summit at alzfdn.org/event/latino-brain-health-summit-chicago. Individuals who have questions about Alzheimer’s disease, brain health or support services can connect with the AFA helpline and speak with a licensed social worker seven days a week by webchat through alzfdn.org, or sending a text message to 646-586-5283. The webchat and text message features are available in English, Spanish and more than 90 other languages.