A family affair: Bringing dementia resources to the Hispanic community

Sonia and Dennise discovered the Alzheimer’s Association Walk to End Alzheimer’s® in 2011 shortly before their mother/grandmother, Chala, died with Alzheimer’s. From there this dynamic aunt/niece duo have become volunteers for the Walk Committee. Noticing a lack of information on dementia in the Hispanic community, the pair have made it their mission to help educate the Spanish-speaking community.

Finding Walk

Sonia Calvo and her then nine-year-old nephew Santiago, first spoke about their experience with dementia in a 2019 blog. Sonia shares the story of her mother, Chala, and her experience with Walk to End Alzheimer’s in Silicon Valley.

Chala raised nine children and was an amazing cook. She loved to knit, crochet and was great at needle point. She worked in the Silicon Valley’s fruit canning industry retiring when the company shut down. In the early 2000s Chala was diagnosed with dementia and died in 2012.

The year before her death, Sonia and her family participated in Silicon Valley’s Walk for the first time. This inspired many members of Chala’s family to volunteer their time and resources to the Association in the hopes of helping others.

Volunteering

Sonia took her newfound free time and put it to good use as a volunteer for her local Walk Committee. “When the dust settled after losing my mom, that’s when we went to the first volunteer recruitment,” said Sonia. “I was working full time in San Francisco, and I wanted to do something within my community in San Jose.”

At the same time Sonia was volunteering, her niece Dennise, one of Chala’s granddaughters, was in high school. Initially, Dennise participated by walking with her family. Even after moving away to college, she continued to find and participate in a Walk close to her. However, when she returned to home to San Jose in 2019, she was ready to do more.

“[I wanted to find] something [Sonia and I] could do together that was productive,” said Dennise. “[My aunt] was already [on the Walk Committee] and it was an important cause for me. [The grandma on my dad’s side also] started to get [dementia] symptoms around that time.”

Sonia and Dennise have been volunteering on the Walk Committee ever since.

Walk day experience

This year, Sonia and Dennise are helping with logistics for the day of Walk. Sonia will be managing volunteers while Dennise will be spending the day in the Kid Zone. Both women will be walking with their team, Team Chala, on September 28

They both enjoy getting to the event before it starts and watching it come to life. “Last year was my first time in the volunteer tent,” said Sonia. “The high school volunteers they’re so enthusiastic. They’re ready to work and make it happen. You feed off their energy.

“The sun rises on the event when the [participants] start coming in. I hear there are a lot of reunions between people that only see each other at Walk from other teams. [People are] celebrating being there [but recognize] the bittersweetness that we all know the underlying reason why we’re there.

“[Then] to see this local park transform into a purple event. The anticipation at the beginning when things come together. That enthusiasm when the emcee is [counting down] and telling everyone to walk together. I remember it like it was the first time we were there. It still gives me chills.”

Connecting with the community

Fortunately, their involvement with the Association doesn’t start and stop on Walk day. The pair is committed to spreading the word, not just about Walk but about the disease in general to their community, specifically the Hispanic community.

According to the Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report approximately 13% of Hispanics who are 65 or older have Alzheimer’s or another dementia. Hispanics are 1.5 times more likely than Whites to have dementia.

Sonia and Dennise work with local high school students and participate in health fairs to make sure that their community knows more about the disease. “We were raised and live by a very Latino centric community,” said Sonia. “We reach out to the school for volunteers. I approached the Parish and provided them with bilingual literature for the Association. We’re pushing to get more information into the community. There are services out there.”

Dennise worked with the high school she attended to hang a sign promoting Silicon Valley’s Walk. Dennise said, “It takes up the whole fence, it’s very visible to the whole community.”

Stigma

The Facts and Figures report also states that Hispanic Americans – more than other racial or ethnic group – are likely to believe that significant loss of memory or cognitive abilities is a “normal part of aging” – with 57% of those surveyed believing this to be true. Additionally, Hispanic Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.

Sonia thinks the stigma surrounding the disease is likely due to lack of knowledge. “There is a stigma out there regardless of the information that’s available,” said Sonia. “We need to try to clean out of the stigma about the dementia and Alzheimer’s disease. It’s a negative stigma and it’s not conducive to any benefit.”

Dennise adds, “I went to a presentation at the Mexican Heritage Plaza. I remember they gave us statistics that Hispanics are a higher percentage [of having the disease] but [Hispanics] had the least amount of information [about the disease]. How are we high [risk] but know the least about [dementia].

“[Many families think the person living with the disease is] going crazy or they’re just old. We provide them with information, so they know that’s not what’s happening and there is information beyond that.”

Become a volunteer

They encourage others to join them as members of the committee. Committee members play a key role in the success of each event, from getting local companies involved to helping participants engage with our mission to planning the event experience.

“My favorite part is getting to know the other committee members and hearing their stories,” said Dennise. “I was young [when my grandma died] and didn’t [understand] the medical stuff. I have a better understanding of what my aunts went through dealing with the doctor stuff.

“[We need volunteers] to help spread the word not just for Walk but for the Association in general. [Volunteering] is a good time, and you feel so accomplished. I don’t do it alone and I’m part of this. I forget how amazing this volunteer thing I do is. I forget to talk about it.”

The good we’re doing

Santiago, who was nine the last time he was interviewed is now 15. While he has taken a step back from the committee, he still comes out every year to walk. “Santiago was the youngest [of Chala’s grandchildren to go to Walk],” said Sonia. “There have been new cousins and nephews and nieces along the way and that’s how our team grows. Santiago continues to participate. His high school advocates for service. He knows how important service is and [through Walk] he’s able to do it for something close to his heart.”

Sonia wants to remind others that you’re not alone in this experience. With nearly 7 million Americans living with the disease anyone can be impacted. “Walk is a good time, it’s a healthy therapeutic time,” said Sonia. “We’re using it as a support system for those we’ve lost. [When it comes to volunteering] I always say: I hate to think about what’s in it for me. It’s not what’s in it for me, it’s what’s in it for all the good that we’re doing.”

To become a Walk volunteer visit alz.org/walkvolunteer for opportunities in your area.

For more information on dementia in the Hispanic community visit alz.org/Hispanic or visit our Spanish language website at alz.org/Espanol

You can join Sonia, Dennise and the rest of Team Chala at Walk to End Alzheimer’s in Silicon Valley on September 28, 2024. Not in Silicon Valley? Visit alz.org/walk to find a Walk near you.