Sonia Martinez started volunteering with the Alzheimer’s Association nine years ago, after her uncle was diagnosed with the disease. Unfortunately, Alzheimer’s is a diagnosis Sonia’s family knows well. “My dear dad passed away six years ago due to complications from Alzheimer’s,” she shares. “And today, my mom is living with dementia.”
Mi Familia, Mi Inspiración; My Family, My Inspiration
Having seen Alzheimer’s disease and dementia run rampant in her own family and in people in her community, Sonia connected with her local chapter of the Alzheimer’s Association, “hoping to share my story and get involved in any way I could — especially with the Latino population. Seeing this disease affect so many of my family, I have to wonder what is down the road for us. If we can do something early on — taking action in our own families and communities — I believe we can help impact a lasting change.”
Volunteering as an advocate was a natural fit for Sonia, who worked in government relations. After a visit to her state capitol in Albany, New York for her local Advocacy Day, Sonia shared, “I saw
fellow advocates coming together, and how powerful our voices are when amplified.” After getting her feet wet in the world of Alzheimer’s advocacy, Sonia then helped facilitate a support group in Spanish in the Westchester, NY region, and quickly became involved with the diversity, equity and inclusion committee of her local chapter. “It was amazing to see so many adult children bringing their parents to the Spanish-language group,” she says. “Watching older Latino fathers participate was pretty emotional for me.” By helping these families, “I found a new way to use my voice!”
And as her mother continues to battle dementia, Sonia and her sisters rotate caregiving duties, since their mom is still living at home. “While she is currently pretty independent, we’re looking into home care, in case that changes,” Sonia shares. “Anyone who has experienced Alzheimer’s or dementia in their family knows that this disease can be so unpredictable. You have to do your homework, and think about what lies ahead.”
The Importance of Alzheimer’s Education
While Sonia has proactively signed up with the
Alzheimer’s Association TrialMatch® clinical trial matching service, she knows that trials are not an easy topic for other Latinos to talk to their family about, especially in the midst of the disease. “It’s often difficult to bring up the topic of Alzheimer’s, since the stigma is still prevalent.”
Sonia approaches this hurdle in communication with education. “If the Hispanic/Latino community doesn’t talk about this disease and get involved with clinical trials, we cannot end this disease. We need more data in order to understand why older Hispanics
are impacted at a rate that is about 1.5 times as likely as older Whites,” she says. “And while we have seen the disease develop gradually for some, in other cases, it can come with immense speed. There are still so many unknowns, and only by getting involved can we truly make a difference.”
Alzheimer’s education also took on an important role in Sonia’s volunteerism because she realized many people in her community were ill-informed about the disease. “Raising Alzheimer’s awareness in the Latino community is imperative, and awareness of being diagnosed early. While you may not be able to prevent the disease, you can be prepared to live your best life if you do receive a diagnosis. Being prepared is the only way to make that happen.” In addition, she focuses on providing support groups in a person’s native language, delivered by someone who looks like them. “This makes a huge difference. Having options is important in the delivery of any service and its overall success.”
In addition to the education of communities, Sonia wants physicians to help educate their patients. “I want doctors to be able to turn to people and say: ‘Are you scared to drive, or forgetting how to get somewhere?’ Call the Alzheimer’s Association. You are not alone.’ This is what I most want for the future. No secrets, no skirting around an issue. Progress moving forward.”
Advocacy Action
Sonia finds inspiration through the annual
Alzheimer's Impact Movement Advocacy Forum — the nation's premier Alzheimer’s disease advocacy event. Through the Advocacy Forum and her year round efforts, she has built a relationship and is pleased to have the attention and support of her elected officials, including Congressman Mondaire Jones (D-NY). “The ability to reach out to the people who can impact change needed in our communities allows for future successes in the fight to end this disease. And when me and my fellow advocates tell policymakers about our personal connections to the disease, our elected officials will often open up and share their own experiences,” she says. “I truly believe we have to inundate people communities at large with our message, whether it’s the call for increased Alzheimer’s research funding or for support of bills like the
Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act, focused on increasing clinical trial participation among underrepresented populations. Community engagement helps further this spreading of awareness.”
When a bill she has advocated for becomes law, Sonia says, “It’s amazing to know that you played a part in its success. You don't always get a ‘Thank You’ in life, and that is the biggest ‘Thank You’ I can think of: Because of all the work that the Alzheimer’s Association does to move the needle with the support of people like me — advocates fighting every day — these milestones are possible, and so impactful. I love seeing our hard work come to fruition.”
The Path Forward
In sharing her own connections to Alzheimer's and dementia, “people open up, and are often more open to taking action,” Sonia says. “It’s my goal to make the Hispanic/Latino community aware of the resources available to inform and support them as they face this disease and equip them to take action as advocates once they’re ready to get involved.
Being a volunteer for the Alzheimer’s Association is so dear to me. This volunteer work has allowed me to speak out and make my voice heard. I think my father would be extremely proud of me, as he always was. And although my mom may not know exactly what I do, I will continue to advocate for her and for all people living with the disease and their families. If you join me, I have hope that we can get to a day when none of us have to face this disease ever again.”
As Sonia continues to inspire with her advocacy volunteerism and spreading of Alzheimer's awareness, learn how you can get involved. Help compel Congress to increase Alzheimer’s research funding and join us by becoming an Alzheimer’s advocate today.
About: Sonia fights to end Alzheimer’s as a volunteer advocate with the Hudson Valley Chapter of the Alzheimer’s Association. She is a bilingual professional with a twenty-year career building multicultural alliances within private, government and nonprofit sectors.
Related:
Alzheimer's Impact Movement
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