Profiles in courage: Latinos in the fight against Alzheimer’s

Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.

We are pleased to share a blog post from Jason Resendez, Executive Director of the LatinosAgainstAlzheimer’s Coalition, convened by UsAgainstAlzheimer’s.

When President Lyndon B. Johnson established Hispanic Heritage Week in 1968, he declared, “This heritage is ours.” Forty-nine years later, the expanded National Hispanic Heritage Month celebrates this shared history from September 15 to October 15 each year.

These celebrations often overlook the contributions made by Latinos in health care and medical research. For example, Latinos play an important role in advancing our ability to address health disparities like Alzheimer’s disease. Latinos are 1.5 times more likely to develop this disease or a related dementia than non-Latino whites, and a report from LatinosAgainstAlzheimer’s and the University of Southern California’s Edward R. Roybal Institute on Aging projects the number of Latinos living with Alzheimer’s will grow 830 percent by 2060 at a cumulative cost of $2.3 trillion.

National Hispanic Heritage Month provides an opportunity to highlight a few of the many Latinos who are united in the fight against Alzheimer’s disease.

Daisy Duarte
An advocate with LatinosAgainstAlzheimer’s, Daisy Duarte is a caregiver for her mother Sonia, who was diagnosed with early onset Alzheimer’s at age 55. Daisy tested positive for the gene linked to early onset Alzheimer’s disease in 2014 and is enrolled in the Dominantly Inherited Alzheimer's Network clinical trial. She is part of the less than one percent of Latinos enrolled in an NIH-funded clinical trial. In 2016, Daisy was featured in the PBS documentary Alzheimer’s: Every Minute Counts.

Jaime Perales, Ph.D., and the University of Kansas Alzheimer’s Disease Center
Jaime Perales Puchalt, Ph.D., is a postdoctoral fellow at the University of Kansas Alzheimer's Disease Center (KU ADC). Dr. Perales spearheaded the development of Envejecimiento Digno, a curriculum to increase Alzheimer's disease awareness among the Latino community. Supported by the Global Alzheimer’s Platform Foundation, Dr. Perales and KU ADC collaborate with LatinosAgainstAlzheimer’s to connect KU ADC with Latino-serving organizations like Guadalupe Centers, one of Kansas City’s oldest Latino-serving organizations. Read more about their efforts here.

Demystifying #Alzheimers research at @KUALZ w/ Latino-serving community partners #MemoryStringsKC pic.twitter.com/BOmOp6VZWI

— Jason Resendez (@jason_r_DC) August 8, 2017

William Vega, Ph.D.
William Vega, Ph.D. is the executive director of the University of Southern California’s Edward R. Roybal Institute on Aging. He is also a provost professor at the university with appointments in social work, preventive medicine, psychiatry, family medicine, psychology and gerontology. Dr. Vega co-authored Latinos & Alzheimer’s Disease: New Numbers Behind the Crisis, a 2016 report that outlines findings on the direct and indirect costs of Alzheimer's disease on the U.S. Latino community.

Adriana Perez, Ph.D.
Adrian Perez, Ph.D. is a board-certified adult nurse practitioner, assistant professor at the University of Pennsylvania’s School of Nursing and chair of the National Association of Hispanic Nurses’ Public Policy Committee. Dr. Perez serves on the advisory board of LatinosAgainstAlzheimer’s and her research promoting healthy aging in Latinas received funding from the NIH and the National Hartford Centers of Gerontological Nursing Excellence.

David X Marquez, Ph.D.
David X. Marquez, Ph.D. is an associate professor of kinesiology at the University of Illinois at Chicago’s College of Applied Health Sciences. As the lead investigator of a study at Rush University’s Alzheimer’s Disease Center, he examines the aging process and risk factors for Alzheimer’s disease in older Latino adults.

California Representative Linda Sanchez (D-Whittier)
“As the daughter of a mother and a father living with Alzheimer’s, I am acutely aware of the pain and hardship that Alzheimer’s disease inflicts on families all across this country… I have worked relentlessly in Congress to increase awareness of Alzheimer’s and dementia’s unique impact on Latino families by calling for culturally tailored awareness programming and health promotion efforts targeting Latinos.” - Excerpt from Latinos & Alzheimer’s Disease: New Numbers Behind the Crisis