Tony Gonzales is proud of his heritage as a third-generation Mexican American, but it wasn’t until he was diagnosed with mild cognitive impairment in 2021, at age 47, that he learned that Hispanic Americans are at higher risk for cognitive decline compared with those of other racial and ethnic groups.
In fact, they’re 1.5 times more likely to develop Alzheimer’s disease, a form of dementia, than older white Americans, according to the Alzheimer’s Association, due at least in part to their also having higher rates of type 2 diabetes and heart disease. Both diabetes and heart disease are risk factors for dementia, which affects about six million people nationally, the association says.
‘People in My Community Don’t Want to Talk About It’
“Honestly, I had no idea, and that’s largely because people in my community simply don’t want to talk about it,” says Gonzales, a national advisor for the Alzheimer’s Association’s early-stage advisory group.
“For some reason, there’s a shame and stigma attached to it, among men in particular. And that, along with the whole machismo thing about not wanting to go to the doctor, means that a lot of people in my community don’t get the treatment they need,” he adds.
Through the contribution of advisory group members such as Gonzales and Myra Solano Garcia, who was diagnosed with younger-onset Alzheimer’s at 62, the Alzheimer’s Association is hoping to reverse some of these trends and tendencies, with a particular focus on the issue during Hispanic Heritage month, which started September 15 and runs through October 15.
“In order to be able to understand the reason for this higher risk in Hispanic Americans and to identify treatments that can slow the progression of this disease, we need to ensure that Hispanic Americans are well represented in clinical studies — and historically they haven’t been,” says Monica Moreno, senior director of care and support for the Alzheimer’s Association.
“Our goal with the advisory group is to reach these communities via individuals from these communities, who understand the cultural differences, so that we can educate them about the need to engage in research,” says Moreno.
Dementia Is Not a Normal Part of Aging
Although some degree of memory loss is a normal part of aging, significant cognitive decline isn’t. Despite that, most of the public — including 57 percent of those who identify as Hispanic American — believe that dementia is a consequence of getting older, according to a survey conducted by the Alzheimer’s Association.
Part of the association’s mission, Moreno says, is to increase awareness that significant memory loss can be a warning sign of dementia and to emphasize that people experiencing it need to see a physician for testing, diagnosis, and treatment.
“We know that Alzheimer’s and other forms of dementia are progressive, meaning that the symptoms get worse over time, and that there is no cure,” she says. “However, we also know that accurate diagnosis and treatment can help better manage the disease and allow people to live active lives.”
With Diagnosis, a New Mission: Raising Awareness
Both Garcia and Gonzales had to retire from their careers following their diagnoses. Gonzales had been working as a community development manager for the American Cancer Society after a career as an executive in the real estate and financial services industries, while Garcia had been a vice president for advancement at a university in southern California, and had more than 30 years of experience in fundraising within academia.
However, though they can no longer engage in jobs that they loved, due to their symptoms, both emphasize that they are by no means finished working. Their new mission: to spread the word, particularly within communities of color, about the importance of maintaining overall health and getting screened for dementia.
“Initially, after my diagnosis, it was a really dark time,” Garcia admits. “But soon after, I decided that I wasn’t going to sit there and twiddle my thumbs. I have a community now — people battling Alzheimer’s and other forms of dementia — and I want to do what I can to help my community, by raising awareness of this disease and how to live with it.”
That both live in California — and speak English and Spanish fluently — is significant, given that the state is home to the largest Hispanic American population in the country, encompassing nearly 40 percent of its 39.3 million residents, based on U.S. Census figures.
However, they see the scope of their message as national: About 60 million people nationally identified as Hispanic American in the 2020 census, up from 50 million a decade earlier, meaning they make up the fastest-growing racial and ethnic group in the United States.
This group will account for roughly 1 in 5 Americans over age 65 years within 40 years, according to census projections.
As a former university administrator and fundraiser, Garcia believes she brings a unique skill set to her advocacy work, and that she can help represent other Hispanic Americans facing dementia.
“I’m used to speaking with politicians and legislators and know how to make big asks,” she says. “I want to raise awareness within the general public, but I also want to make sure that my community gets the resources it needs to manage this disease. That’s my new goal in life.”
The pair also want to share their unique stories and experiences with getting a diagnosis and managing their symptoms.
What Motivated Gonzales to Seek Help
Gonzales started experiencing symptoms of memory loss at age 45. He remembers having trouble with numbers at work, and getting lost on his way home.
So when he heard from colleagues and family that they were worried “something was wrong,” he listened and went to a doctor, he says.
“Unfortunately, most people don’t do that,” he adds. “But I saw what happened to my grandmother, who developed dementia when I was a teenager, and I saw the stress it caused my parents.”
Gonzales’ own children — a son, Trey, who is a retired Marine and currently in the police academy, and a daughter, Maria, who works in real estate in Bozeman, Montana — are in their twenties and “just starting out as adults, with their own families,” he explains, and he wanted to be proactive about his health so as not to be a burden on them.
For Garcia, a Family History of Alzheimer’s Came to Light
Garcia had a slightly different experience. She’s 64 years old now and first started experiencing memory loss about nine years ago. After an initial diagnosis of attention-deficit disorder, she was finally found to have early-onset Alzheimer’s following “a lot of testing” in 2020, she says.
She later learned she has a family history of the disease, including two aunts and a grandfather. After at first trying to continue her career as a fundraiser, Garcia now considers her work with the Alzheimer’s Association a “full-time job.”
“I want to do everything I can for the Alzheimer’s Association, because these are my people now,” she says, referring to people with dementia. “We need to learn why it seems to affect people of color more.”
‘I Want to Keep Living’ Says Gonzales
Although both Gonzales and his wife had to stop working to manage his care full-time, he stays busy with his advocacy work for the Alzheimer’s Association and pursuing his hobbies, such as music, through his podcast, as well as occasional voiceover work.
He also hosts a travel podcast with his wife, Kori (the pair were high school sweethearts), and spends time with his 2-year-old grandson, who he describes as the “light of my life.”
“In addition to educating others about this disease, I am also showing my children and my grandson that when you have it, you just have to keep going,” Gonzales says. “My goal is to almost normalize this disease, [to show] that people can still live and live well with it. I want to keep doing stuff, to keep living, and I think anyone facing dementia or memory loss should do the same.”
For more information on Alzheimer’s disease and other forms of dementia in Spanish, you can visit the Alzheimer’s Association’s Spanish-language web site at www.alz.org/?lang=es-MX. The association also provides information and resources on dementia, in Spanish, here: www.alz.org/ayuda-y-apoyo/recursos/hispanos-y-el-alzheimer. In addition, its 24/7 helpline — 800-272-3900 — includes more than 200 languages, including Spanish.