WAM spoke to Mirella Díaz-Santos, PhD, about why she is committed to community engagement in the Latinx community and how science—specifically research studies—needs to be language-inclusive.
Read the Q&A with Dr. Mirella Díaz-Santos below.
WAM: As a neuropsychologist at UCLA, your focus is on community engagement and outreach to the Latinx population to raise awareness around Alzheimer’s and brain health. Why?
Dr. Díaz-Santos: I am committed to community engagement because I believe we all deserve access to the most recent, ever-evolving, evidence-based knowledge about brain health, and Alzheimer’s disease, and I don’t think everyone is getting it. I have found in my academic and community work that there are divergent ways in how we convey information impacting the access to that information. Academic partners have said, “communities need more information,” while our community partners have voiced the same request. Despite many educational efforts throughout the years, we continue to hear the same message from the communities that they aren’t getting the information they need, which indicates a knowledge divide we need to bridge, and I think it’s both a cultural and linguistic issue. We academics and clinicians continue to have a hard time making critical medical information accessible and relatable to our diverse communities. What we need is to convert the academic Anglo-Saxon, westernized language into information that resonates with and captures the unique and divergent lived experiences of our historically minoritized and marginalized communities. In many cases that involves translating traditional medical information and conveying it in ways that may include the use of music, visuals and art—effective means of getting our communities feeling a connection to the information. If we as academics and clinicians cannot translate the information in a way that’s meaningful, then it does not have an impact because we cannot connect with it.
A second essential step is to minimize the amount of over-simplification, or “dumbing down” of information because we academics believe we need to “accommodate for cultural factors.” In my experience, every member of our community understands the complexity of his or her life pretty clearly. So as a researcher and educator, the onus is on me to ensure I make the information relatable to every individual’s lived experience, and to ensure that every person has deep access to the best information there is. My way of doing that is to listen carefully and integrate all the necessary references people give me in our conversations to connect their unique life circumstances with the best and most recent findings around the biological, genetic, social and structural determinants of health linked to Alzheimer’s disease. I want to provide equity in access to knowledge about Alzheimer’s prevention, risk, diagnosis, treatment and dementia care. My hope is that I can help communities regain their power over their health by conveying knowledge previously obscured by medical jargon. I focus on community engagement because if my efforts can minimize some of the pain my family and I went through with my grandmother’s dementia journey and death, then I know I’m being truthful to my purpose as a researcher, a neuropsychologist, and, most importantly, a granddaughter.
WAM: What are the main reasons we believe that Latinos are at higher risk for developing Alzheimer’s and dementia?
Dr. Díaz-Santos: For a long time now, we have heard the narrative that Latino/a/x/e and Hispanic communities are at 1.5 times greater risk of AD due to multiple factors, including the Hispanic Paradox and the higher prevalence of cardiovascular and metabolic (diabetes, hypertension, hyperlipidemia) disorders. This narrative has dominated the intentions of our work in community engagement around brain health and Alzheimer’s disease, as we have emphasized the science behind the statistic that 40% of Alzheimer’s might be delayed or prevented by modifiable lifestyle factors, such as diet, sleep, physical movement, and mental/spiritual balance. But more recently, there is increased emphasis on the structural and social determinants of brain health and Alzheimer’s disease. Determinants of health are the conditions and environments in which we live, learn, work, play, worship and age. A recent study by Yu and colleagues, found that Mexican American older adults living in Sacramento had 1.5 times greater risk of developing Type II diabetes when living in highly polluted neighborhoods, highlighting the impact of environmental determinants of health. Connections have been made to ozone exposure, outdoor physical activity and a higher incidence of Type 2 diabetes in the SALSA cohort of Older Mexican Americans, including being at higher risk by exposure to polluted environments during exercise. So recent studies are moving the common narrative away from “cultural factors” leading to the higher risk of Alzheimer’s disease and more towards a more complex narrative about how our policies and laws impacting social determinants of health also are contributing to the very well-known disparities in Alzheimer’s disease.
WAM: Are the greater obstacles to good brain health in the population you study physical, socio-economic or cultural?
Dr. Díaz-Santos: In my opinion, the greatest obstacle is access to equitable power and resources. We definitely have the agency to make individual choices that are best for our brain and mental health. But we also have to recognize that resources and power to access these best practices for brain health are distributed in a systemic manner by those in leadership. Science tells us that following the MIND diet reduces our chances of cognitive decline and dementia, but let’s add social context into the mix. Many of our historically marginalized and minoritized communities live in food swamps with a higher proportion of fast-food chains and low access to affordable, nutritious foods. Regarding access to education, we might say, “it’s all about the choices you make to attend good schools, get good grades, all of which would provide you greater job opportunities and opportunities to live in better neighborhoods.” Well, then we have to talk about school segregation laws, redlining practices, and even discriminatory practices when BIPOC (Black, indigenous, people of color) individuals apply for jobs. Studies have found that candidates will be less likely to be called for an interview if their names resemble a stereotypical Black or Hispanic name. The key here is that all of these factors, good education, greater job opportunities, living in healthy and safe environments, ability to qualify and pay for equitable health insurance, all contribute to good brain health and reduced risk of Alzheimer’s disease and related dementias. We just need to acknowledge the complexities of the obstacles, ask why they are in place–and who placed them there.
WAM: Why is it essential that Latinos sign up for clinical trials?
Dr. Díaz-Santos: It is essential because the results of existing clinical trials are not–or may not be–applicable to us. The current state of Alzheimer’s prevention and intervention science does not represent our community. Although they might be based on the best science, it is science that has not partnered with us, and therefore likely contributes to maintaining the current disparities in precision medicine. It is also essential not to place the responsibility on diverse communities, but rather look closely at the scientific methodology involved. In my work with the Human Connectome Project – Aging we found that nearly 89% of potential eligible Latino/a/x/e – Hispanic individuals 50 years and older were automatically excluded from the study due to language. And where Spanish or an indigenous dialect/language was the primary language of the potential candidate, the scientific protocols were done solely in English. As researchers, we need to be cognizant of the barriers we place on the study designs. It is also essential that Latino/a/x/e – Hispanic scientists with a public health and cognitive neuroscience background are leaders and principal investigators in Alzheimer’s disease clinical trials to ensure equitable representation.
WAM: WAM is launching an Alzheimer’s awareness campaign around Dia de los Muertos, or Day of the Dead, which is about remembering our loved ones who have passed away. How have you seen the pandemic affect the families you work with, and why is it important to honor their memories and appreciate the love they shared?
Dr. Díaz-Santos: The COVID-19 pandemic has been devastating to everyone, but particularly to the Latino/a/x/e-Hispanic community. There is collective mourning and grief. Many caregivers in our community have seen their loved ones with Alzheimer’s disease decline rapidly during the pandemic, while many have seen them pass away. People are enduring complex trauma, and/or re-experiencing trauma from their past, including losing loved ones to Alzheimer’s even before the pandemic. During these painful times when our holiday celebrations are different due to social distancing, we still can find strength in remembering the love and great times we spent with those we have lost. Remembering them keeps their memory and spirit alive. I lost my maternal grandmother in 2007, and she is the reason I left my family in Puerto Rico to understand and learn how this brain disease was able to progressively change her essence. I still see the pain in my mother’s eyes when remembering her, and how impotent she felt. Doctors were not helpful in explaining what dementia was, how it affects the brain, how it progresses and how to get assistance to endure this journey with dignity. It’s 2021 and I continue to hear the same stories in our communities. So yes, we remember our loved ones who have passed, and in their honor, we continue to fight for a more inclusive science and practice in Alzheimer’s disease.
Learn more about Mirella Díaz-Santos, PhD, HERE