Don’t believe the naysayers. Good things are happening in the fight against Alzheimer’s disease and other forms of dementia.
While the challenges are real and enormous, Congress has built momentum and is poised to change for the better both the scientific and societal landscape. Since passage of the landmark National Alzheimer’s Project Act, Congress has been focused on developing and now aggressively executing against the national Alzheimer’s plan. NAPA led to five National Institutes of Health-led summits aimed at advancing biomedical and social science research. Congress has responded to the emerging research with five consecutive years of robust appropriations increases to drive that research agenda. Through the 21st Century Cures Act, FDARA and the EUREKA Act, Congress has strengthened federal agencies’ capacity to accelerate the science and to ensure that it is informed by patient perspectives on how research is conducted along with what that research should deliver. Through Medicare, Congress has given federal agencies the tools to improve detection and diagnosis of dementia along with support for physicians to help families plan dementia care.[ A Caregiver’s Story ]
The programs and clinical trials that stem from the congressional legislation make a real difference for people living with dementia and their families. At the age of 55, Daisy Duarte’s mom, Sonia, was diagnosed with young-onset Alzheimer’s disease. At the time of her mother’s diagnosis, Daisy was the owner of a thriving small business in Springfield, Mo., which she closed to provide the full-time care her mom needs. As a full-time care partner for her mom, Daisy is among the 1.8 million Latino family caregivers across the United States providing intensive care for a loved one living with Alzheimer’s disease or another form of dementia.
n 2014 Daisy underwent genetic testing to determine her risk for Alzheimer’s. The results changed her life and just might change the course of the disease. Daisy tested positive for the same young-onset Alzheimer’s gene carried by her mother. The news spurred Daisy into action. She joined an Alzheimer’s clinical trial at the Washington University in St. Louis and speaks openly about the disease and the importance of research participation to medical students, researchers, and to Latino communities across the country. Her message is critical.[ Under Represented In Alzheimer’s Disease ]
Latino-Americans are about one and half times more likely to develop Alzheimer’s disease than non-Latino whites, yet they are less likely to receive a diagnosis from a physician compared to non-Latino whites. Also, Latinos are severely underrepresented in Alzheimer’s disease research. Daisy is among the less than 1 percent of Latinos participating in the NIH-funded clinical research of any kind. Similarly, African-Americans are underrepresented in clinical trials. As policies move us toward both research and health systems capable of tackling Alzheimer’s disease, we must make outreach to Latinos and African-Americans urgent priorities.
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