By conducting clinical research and community outreach to the Latino community, Dr. Mirella Díaz-Santos promotes Alzheimer’s disease awareness. Alzheimer’s disease is characterized by memory loss and other cognitive abilities that interfere with daily activities. Approximately “60-80% of dementia cases account for Alzheimer’s disease,” according to the Alzheimer’s Association. For example, having trouble remembering brand-new information is one of the most common early onset symptoms of Alzheimer’s.
Dr. Mirella Díaz-Santos is an assistant professor in the department of neurology, with the Easton Center for Alzheimers Research & Care, and the director of the Equity for Latinx-Hispanic Healthy Aging (ELHA) Lab at the University of California, Los Angeles. She is also a neuropsychologist with expertise in Alzheimer’s disease and related dementias, working primarily with the Latino older adult English-Spanish bilingual community and their families.
Dr. Mirella Díaz-Santos completed her bachelor’s degree in psychology from the University of Puerto Rico, Río Piedras Campus, before moving to the United States and receiving her doctorate degree in clinical psychology and neuropsychology from Boston University. She completed two post-doctoral fellowships at the University of California, Los Angeles: a clinical neuropsychology fellowship and a cognitive neuroscience research fellowship.
She is also the director of research at the Hispanic Neuropsychiatric Center of Excellence and Human Behavior. In addition, she is an active member of the Women’s Alzheimer’s Association, which funds research into disparities in Alzheimer’s disease. They also focus on education, prevention and advocacy.
Dr. Mirella Díaz-Santos makes it her mission to end suffering in silence whether you or a loved one have Alzheimer’s disease. She is also trying to end barriers that are stopping Latinos from getting treated. Some of those barriers include lack of insurance, language barriers, cost and transportation.
“The data shows that Latinos are 1.5 times more likely to develop the disease,” Dr. Mirella Díaz-Santos said. “Often, barriers within the Latino community prevent or delay diagnosis, which makes treatment impossible. That’s why it is important for her that Latinos participate in clinical trials.”
CALÓ NEWS interviewed Dr. Díaz-Santos about her work and related issues faced by the Latino community.
Responses have been edited for clarity and brevity.
MIRELLA DÍAZ-SANTOS, 38, CULVER CITY/NEUROPSYCHOLOGISTS AND ASSISTANT PROFESSOR IN NEUROLOGY/ELLA, SHE, HER/LATINA/BIRACIAL
AS A NEUROPSYCHOLOGIST AT UCLA, WHY IS IT IMPORTANT TO ENGAGE AND RAISE AWARENESS AMONG THE LATINO COMMUNITY ABOUT ALZHEIMER’S DISEASE AND BRAIN HEALTH?
It is very important because, typically, we don’t talk about brain health anywhere. We never wonder what the brain is, why it is important, or how to keep it healthy. We engage in many activities, such as education and keeping our brains active through patience and struggle, but we overlook how this relates to Alzheimer’s disease prevention or risk factors for the disease in the feature. So, by raising awareness, we are empowering our communities to see that even though we are at higher risk for Alzheimer’s disease, we know that there are approximately 40% of daily life changes that we can make that will keep our brain healthy and that can prolong the longevity and push back the pathology of Alzheimer’s disease. That’s why I like talking about prevention and the things you can do to help our communities, and letting them know that they are not alone in that process is very important and that’s why we engage them with awareness a lot. I specifically 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 then I know I’m being truthful to my purpose as a researcher, a neuropsychologist, and, most importantly, a granddaughter.
WHAT ENCOURAGED YOU TO BECOME AN ALZHEIMER’S RESEARCHER FOR LATINOS?
My grandmother inspired me. My maternal grandmother passed away in 2007 due to complications and secondary Alzheimer’s disease pathology, and her name was Estrella Ortiz. That’s when I became very interested in understanding what Alzheimer’s disease was. That’s why I moved to the United States to get more training, and that’s how I became an Alzheimer’s researcher, which was through graduate school and fellowships here at UCLA and now I’m also faculty. One thing that was always important to me was working alongside communities to ensure that my research programs meet the needs of our communities rather than me and my team imposing what we think is more beneficial to them.
WHAT ARE SOME REASONS THAT LATINOS ARE AT HIGHER RISK FOR DEVELOPING ALZHEIMER’S?
There are several reasons and every time you look at the data, it’s always 1.5 times greater. The literature will always talk about those risk factors and in our communities, we know that we have a higher chance of getting diabetes, hypertension, or anemia and that’s the medical aspect of higher risk. We know that those risk factors will affect your brain in different ways, which increases your chances of developing the disease. When you add the genetic component, that also increases your risk for Alzheimer’s disease. For a very long time, researchers have been publishing more on the individual level. More recently, they are discussing more structural level risk factors, and where are our communities in the post-segregational era when we talk about structural racism, policymakers, law, and all that? We have to ask, “Where is all of the population located?” It happens to be that pollution is associated with a higher risk of Dementia. We have to also see where these big companies are infecting soil and things like that and that’s just another example that includes being at higher risk of the disease in the future. Now we are talking about a lifelong journey of exposure in your daily life, where you live and that’s basically determining the social structure of health and how that will increase your chances of being high risk as well.
WHAT AGE GROUP DOES ALZHEIMER’S TYPICALLY AFFECT THE MOST?
Typically, when we are talking about Alzheimer’s disease, it’s an aging disease and that has always been its framework. That is, as you reach the age of 65, your chances of developing Alzheimer’s disease or another type of dementia increase. However, that data is coming mostly from white communities. So, now with the new “movement” of working with equity and inclusion, we are raising the question of whether it’s Latinos who are 65 and older in our communities, because now it might be sooner due to the lifelong risk history of so many factors that are put on our communities by policies and laws. As previously stated, it is typically an age-related disease in people 65 and older; however, if you have a family history of Alzheimer’s disease, your symptoms will appear much earlier, in the early stages of the disease, which could be as early as your early 40s.
IF ONE FAMILY MEMBER HAS ALZHEIMER’S DISEASE, HOW LIKELY IS IT FOR ANOTHER FAMILY MEMBER TO BE AT RISK OF DEVELOPING IT?
It depends. I think there’s a difference because if it’s familial AD and you have strong genetics, that puts you at high risk of developing Alzheimer’s. If your genetics are more idiopathic, you have all these risk factors, including a small percentage that is genetic, which when combined increase your risk of developing Alzheimer’s disease. Those risk factors include hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, excessive alcohol consumption, traumatic brain injury, and air pollution.
People can get tested, but there’s a lot of controversy about getting tested early on because we are talking about idiopathic Alzheimer’s disease and dementia. We are talking about mostly beta-amyloid and tau proteins, which are the two pathologies associated with them, and so far we have found in the literature and in the science that the brain is pretty resilient. Every brain contains different amounts of beta-amyloid and tau proteins, but this does not mean you will develop the symptoms of Alzheimer’s disease. So, what that means is that you can have that pathology in the brain, but it doesn’t mean you’ll develop the syndrome, which is memory loss, difficulty getting lost, and repetition of yourself. That’s why genetic testing is never ideal because you can get tested, but it doesn’t completely predict. Let’s say you get tested and find out you have two aliases with the same predisposition. You now have to figure out what you’re going to do with that information. In our community, I have seen a stronger focus on prevention when people find out they are predisposed genetically.
WHAT ARE SOME SYMPTOMS OF ALZHEIMER’S DISEASE?
Alzhimer’s disease leads to increasingly severe symptoms, including disorientation and confusion about events, time and place, as well as not recognizing family, friends, and professional caregivers. Serious memory loss, behavior changes, difficulty speaking, swallowing and walking.
WHAT ARE SOME WAYS TO END ALZHEIMER’S STIGMA IN THE LATINO COMMUNITY?
It’s complicated because the stigma comes from associating Alzheimer’s with dementia, and dementia is associated with being demented, which means you are going crazy and need to be hospitalized and segregated from the community. So, there’s a lot of suffering and isolation. Many of my colleagues have said that if you start with the common story that most of us—not all of us—have been impacted by Alzheimer’s disease, I believe that by naming the stigma, you begin to break it. I feel like if we talked about it more in our communities, we would have that safe place to talk about that journey and start reducing that judgmental stigma. And you’re basically focusing on the love you have with your family and the things you will do to make sure that they remain healthy as much as possible and honor their lives after they pass.
WHY IS IT A PERSONAL FIGHT FOR YOU TO END ALZHEIMER’S IN LATINOS?
The reason why I’m so committed to the cause is because as I grow older, and focus all of my efforts on working alongside the communities and understanding their stories, and asking them, “Now that you have one of our own community members in a leadership position with some resources, what can we do to help?” and I continue to hear the same stories, consisting of what happened to my family 20 years ago. So, I’m like, “So, you’re telling me that the pain that my mother still suffers to this day from losing her mother when she was like 64 years old, which is really early and really young, is the same story of community members here in Southern California, in Los Angeles County, and in the nation” and I’m like, “This whole thing needs to stop.” So, that’s why it’s so personal to me to keep that fight in me. I am engaged in clinical work, research, policies, and laws. I go to Capitol Hill because I know we have to advocate for our communities at those levels. So, I make it my job to stop that cycle of suffering in silence within families. There’s also a lot of community support that empowers each other.