To address the underrepresentation of African Americans and Latinos in all aspects of neurological research, UsAgainstAlzheimer's has launched a multi-pronged engagement strategy to build a national network of diverse researchers, patients, caregivers and stakeholder groups for collaboration and knowledge sharing around barriers, facilitators and priorities in Alzheimer's research. The project aims to foster effective and inclusive community engagement and collaboration strategies.
The engagement program is partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (4192-USAA) and will support two flagship convenings in 2017 and 2018 focused, in part, on patient-centered outcomes research. The 2017 convening will take place on October 3 in Washington, DC. The project will include a series of webinars to identify community-based research priorities and result in the formation of minority stakeholder networks to inform, promote and facilitate the inclusion of underrepresented populations in Alzheimer's and dementia research.
"Alzheimer's is ravaging our communities," said Stephanie Monroe, the Executive Director of AfricanAmericansAgainstAlzheimer's, an UsAgainstAlzheimer's Network. "Its rising economic costs, the toll imposed on those afflicted with and caring for those with the disease, and the loss of productivity demand more research geared to better understanding of how to prevent, treat and ultimately cure this disease."
The program builds on UsAgainstAlzheimer's 2016 Disparities in Alzheimer's and Dementia Summit, co-convened with Leaders Engaged on Alzheimer's Disease (LEAD Coalition). The first-of-its kind event framed the need to increase the inclusion of underrepresented communities in brain health research and identified cross-cutting priorities to increase awareness, understanding and action on Alzheimer's disease among Latinos and African Americans.
"We must work together to address the growing impact of Alzheimer's on communities of color through community outreach and engagement in research," said Dr. Goldie S. Byrd, project lead and Director of the Center for Outreach in Alzheimer's Aging and Community Health at North Carolina A&T State University. "This project will be vital to promoting diversity and inclusion in brain health research."
At the center of this new collaborative will be the development of a sustainable and accessible online network to facilitate future minority research engagement and knowledge sharing. The program will be guided by an advisory panel of African Americans and Latinos living with Alzheimer's, caregivers, community leaders and faith leaders; Alzheimer's researchers; and minority-serving primary care clinicians.
Latinos and African Americans are more likely than non-Hispanic whites to develop a cognitive impairment like Alzheimer's, yet they are less likely to be diagnosed with the condition or participate in clinical research. UsAgainstAlzheimer's is dedicated to addressing these disparities through its LatinosAgainstAlzheimer's and AfricanAmericansAgainstAlzheimer's Networks. Increased participation in research will have far-reaching implications for communities of color, including better diagnosis and evaluation of treatment.
"Given the tremendous public health risk that Alzheimer's and dementia poses to Latino families, it is essential to develop community-based approaches and partnerships that enable researchers, health professionals, policymakers and families to better understand and address these conditions," said Jason Resendez, project co-lead and Executive Director of the LatinosAgainstAlzheimer's Network and Coalition. "Brain health must be a priority for a rapidly aging Latino community."
UsAgainstAlzheimer's is an innovative non-profit organization demanding -- and delivering -- a solution to Alzheimer's. Driven by the suffering of millions of families, UsAgainstAlzheimer's presses for greater urgency from government, industry and the scientific community in the quest for an Alzheimer's cure -- accomplishing this through effective leadership, collaborative advocacy and strategic investments.
AfricanAmericansAgainstAlzheimer's aims to unify the powerful voice of the African American community in the fight against Alzheimer's disease. The network arms African Americans and others who are committed to our mission with the information and easy-to-use connections needed to be heard by the public, in Washington and in state capitals, and by industry leaders and the research community. The Network engages and connects a network of individuals, businesses and nonprofit organizations to mobilize the energy of African Americans in advocacy efforts that advance our national commitment to ending Alzheimer's.
The LatinosAgainstAlzheimer's Network and Coalition drives awareness and action on Alzheimer's and dementia's disproportionate impact on the Latino community through strategic convening, policy analysis and advocacy - activating diverse health, community and policy stakeholders in the race for an Alzheimer's cure.