RICHMOND, Va. (WRIC) — Dementia is a looming, but largely unrecognized public health crisis in Latino communities in the United States, according to the Alzheimer’s Association. That’s why local residents who have been impacted by the disease are working to spread awareness and fund research to find a cure.
During the first half of the 21st century, the number of elder Hispanics suffering from Alzheimer’s and related dementias could increase more than six-fold, from fewer than 200,000 now to as many as 1.3 million by 2050, based on census projections examined by the Alzheimer’s Association.
Richmond resident Lisette Carbajal knows the real-life impact of these figures all too well.
“I miss that man so much,” she told 8News on Monday, speaking about her late father, who passed away in 2019, after a more than 10-year battle with Alzheimer’s.
Carbajal’s parents immigrated from Peru and settled in Virginia, where she was born. Her father was a carpenter there, and her mother was an in-home maid for a family. Carbajal said that her parents decided to come to the U.S. to make a better life for their family.
While in her third year at the University of Virginia (UVA), Carbajal’s father was diagnosed with Alzheimer’s.
“I miss the joy that he brought to the family. He was always so happy, always so proud of all of us,” she said. “He immigrated — it would’ve been almost 40 years — with little to nothing, and to have his two children have a great life here in the United States of America is all he wanted, and he fulfilled that by his hard work, even when he had Alzheimer’s.”
Carbajal helped take care of her father, alongside her mother, brother and sister-in-law, following his diagnosis.
“You can’t mess up,” she said. “You have to do very well because you have a sick parent at home that, ultimately, will need you.”
But, looking back, she said there were earlier warning signs.
“Both of my parents were incredibly hard workers. They both had two jobs, working at the same time, while also trying to raise a family in a new country,” she said. “My dad would develop Alzheimer’s disease later in life, and it was incredibly difficult, the challenges that came along with that — finding care, finding someone who understood our cultural background, also who understood him in his own language.”
Although Carbajal’s father was not officially diagnosed until her junior year at UVA, she said that, as young as 14, she remembered others pointing out what was likely early symptoms.
“Dad would forget simple tasks,” Carbajal said. “They were little things that, if you think about it, you wouldn’t pay too much attention to. But when I reflect on his journey, I realize there were a lot of things that we could have done differently.”
Carbajal told 8News that one of the major challenges for her family, and her mother, in particular, was learning about a disease that they were not familiar with while in Peru.
“It was something that she did not want to face,” Carbajal said of her mother. “As I talk to other Hispanic families, young millennial caregivers who have gone through this, they found themselves in similar situations, where it was hard to get Mom or Dad to accept what was happening to their loved ones.”
Hispanics are 1.5 times more likely to develop Alzheimer’s than older, white Americans, according to the Alzheimer’s Association. They are also more likely to be diagnosed in the later stage and are less likely to be recruited for clinical trials.
Carbajal said that could be contributed to a lack of trust or understanding, as well as different languages and cultural backgrounds.
“There is a language barrier, trying to find a doctor that understands not just your language, but also your background and trying to deliver this awful diagnosis in a way that the family can take in and accept,” she said. “The more we talk about that, just like in many cases, the less stigma there is around it, especially in the Hispanic community.”
Carbajal first got involved with the Alzheimer’s Association during her third year at UVA. She told 8News how her parents drove to Charlottesville to participate in the Walk to End Alzheimer’s following her father’s diagnosis that year.
Since then, Carbajal has worked on the Alzheimer’s Association Greater Richmond Board for nearly seven years and has participated in several more walks, raising thousands of dollars for research, according to a spokesperson.
“I think if he was still around, he’d be so happy to see the fruits of his hard work come to fruition,” Carbajal said. “The more we are able to educate families who are in this situation, the more we’re going to be able to make advancements in the medical field, in the research field for our communities to better understand why and how this impacts us differently than other groups.”
Those looking for education, resources and support following Alzheimer’s or other dementia diagnoses may call the Alzheimer’s Association’s free, bilingual care consultation helpline — English and Spanish — at 800-272-3900.