LORAIN, OH - At Sacred Heart Chapel, S. Cathy McConnell ministers to four generations of Spanish-speaking and bilingual parishioners.
There are the founders of the parish who speak Spanish. The founders’ children, whom she said are bilingual and bicultural. The founders’ grandchildren whom she called “USA Kids,” who understand Spanish but don’t use it. And then the great-grand-kids who use English all the time.
But there is one attribute that transcends language and that is the strong sense that families must take care of their elders, she said. “There is a heavy sense of family in the culture that does not go away with language,” Sister Cathy said. “You’ve got to take care of the grandparents and you’ve got to take care of those with disabilities.”
Dementia researchers and public health experts are zeroing in on dementia risk factors, including lifestyle and genetics, in the Hispanic, Latino and Latinx community. According to the National Institute on Aging, the Centers for Disease Control and Prevention (CDC) reports that by 2060 the number of Latinos age 65 and older is expected to nearly quadruple, and that Latinos will face the largest increase in Alzheimer’s disease and related dementias cases of any racial/ethnic group in the United States. Because age is the greatest risk factor for Alzheimer’s, that means there will be more Latinos with the disease in the years ahead—about 3.5 million in the United States by 2060.
Currently Hispanics are about 1.5 times more likely to develop dementia than non-Hispanic whites, according to the Alzheimer’s Association’s Facts and Figures report. New research released this summer is helping dementia experts understand how genetic predictors of Alzheimer’s risk may differ among Hispanics of different backgrounds/heritage, and between Hispanic and White individuals.
"We need to advocate and focus in on research, understand the risk factors and dramatically improve the timeliness of diagnoses and the time to do this is now," said Lindsay Walker, Community Executive Director of the Alzheimer's Association Cleveland Chapter. "More research is needed to provide actionable ways to reduce the risk for Alzheimer’s and dementia, especially in Latin Americans who are disproportionately affected," Walker said.
Alzheimer's is a progressive brain disease that affects memory, thinking and behavior. In Ohio, there are 220,000 individuals age 65 and older living with the disease.
“We know we need to reach the Latino population with our free programs and services,” said Paula Kollstedt of the Alzheimer’s Association. “Education is the key to this disease, education is power,” Kollstedt said. “This is a disease that just does not affect one person, it at least affects three others caring for them,” she said. “We need to understand the cultures of all populations.”
Alberto Williams-Medina was born in Bayamón, Puerto Rico but spent most of his time in Vega Alta, on the northern coast of the island. He said he grew up with his grandparents and his great grandparents and was taught to care and respect his elders. His great-grandmother had Alzheimer’s which they called “senil demencia.”
“You could see it in her eyes, she was physically there but she wasn’t there there,” Williams said. He remembers being around 12 years old cooking for her and helping to give her her medications. “I would talk to her and she would drift off a lot of times. It’s a very hard experience to live,” he said. “Because of my family pushing me to care for my elders….I found joy doing it.”
Today he is in the Master's in Medical Physiology program at Case Western Reserve University and will become the Alzheimer’s Association Cleveland Area Chapter’s first community educator to give programs in Spanish. Sacred Heart Chapel, whose congregation is comprised of mostly Puerto Rican and Mexican families, with a smattering of people from Central America and Latin America, will be his first assignment. “It’s absolutely necessary to cater to the needs of the Hispanic, Latino, Latinx communities,” he said. “I think the Alzheimer’s Association trying to immerse themselves in the culture is beautiful,” Williams said. “That makes us think we are valued. It’s not just a one-size-fits-all.”
Sister Cathy wants to make that connection because she knows how important it is for families to connect with resources about Alzheimer’s and dementia. Her mother had Lewy body dementia, the second most common type of dementia after Alzheimer’s. “When people say they have someone who is sick, dying or has Alzheimer’s I immediately refer them,” she said.
“I was a caregiver for my mother. There were nine of us, we were a team and we were able to keep mom home. I’ve noticed the community here, many of them do the same thing, the problem is they are not given the same tools,” Sister Cathy said.
“(Caregivers) can be so frustrated and feel overwhelmed but when they have tools to cope it is better,” she said. In her congregation, she said, most are not sole caregivers. “There is a network there,” she said.
Sister Cathy said she is not sure about the scientific differences as to why Alzheimer’s may impact the Latino community more, “but the way that the community deals with it may be different. I think there is a little bit more patience when mom forgets something. In the mainstream community it’s more about let’s find a facility for mom.”
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.