As the world's largest nonprofit funder of Alzheimer's and dementia research, the Alzheimer's Association is committed to accelerating global progress toward new treatments, diagnostic tools, methods of prevention and, ultimately, a cure. But this progress can never be fully realized until we deliver solutions that will work for all populations — achieved by a representative and inclusive scientific field of researchers, study participants and scientific disciplines. Current disparities in Alzheimer's and all other dementia will only become greater unless we close malleable gaps. The following Association initiatives and partnerships, among many others, are critical steps in that effort.
Our International Research Grant Program funds investigations to advance our understanding of Alzheimer's disease and all other dementia, identify new treatment strategies, improve care for people living with dementia, and further our knowledge of the brain and disease prevention. We are committed to promoting diversity in research by funding grants to increase representation of scientists from diverse backgrounds, as well as to address health disparities around Alzheimer's and other dementia. As of March 2023, the Association has 153 active research projects totaling over $24 million to promote diversity in the scientific community, and more than 200 active research projects totaling over $20 million to increase the understanding of and address health disparities.
Through investment in promising studies by the Association and outside entities, we are increasing participation and representation of diverse populations in key science. The Association funds the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER) study, an investigation to evaluate if interventions that simultaneously target many risk factors protect cognitive function in older adults who are at increased risk for cognitive decline. As of March 2023, the study is fully enrolled with over 2,100 participants; over 30% of those enrolled are from populations historically underrepresented in clinical trial research.
The Association leads the New IDEAS study, which aims to understand the utility of an accurate diagnosis in Alzheimer's disease in underrepresented populations. The study is also pioneering a new methodology for the recruitment, retention and engagement of underserved populations to dementia specialists in clinical practice. The Association is enhancing the study by enabling the New IDEAS Biorepository, which will store saliva and blood samples from participants who have completed brain scans. This will allow researchers to test and validate new genetic and blood biomarkers for dementia that are applicable and accurate for a diverse, real-world population. New IDEAS will enroll up to 7,000 participants, with over 50% identifying as Black/African American or Latino/Hispanic.
To address the need for informed communication practices and appropriate use of language in Alzheimer's and dementia research, we assembled a workgroup of experts in health disparities to create the Alzheimer's Association Inclusive Language Guide. The document, which underwent a public comment period, outlines minimum standards and guidance for labeling and communicating about social identities, characteristics of individuals, and populations and health disparities. A final version of the guide will be released in 2023.
We work to support and advance the careers of researchers from diverse backgrounds across a variety of channels. In 2022, we introduced a revised system of tiered pricing for the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART), a global network of scientists, clinicians and other dementia professionals, with discounts for postdoctoral researchers and free membership for all students and individuals based in low- and middle-income countries. ISTAART also hosts a Diversity and Disparities Professional Interest Area (PIA) to support underrepresented scientists and encourage year-round education and conversation identifying potential differences in risk reduction strategies and diagnosis and treatment effectiveness in individuals of diverse backgrounds. The PIA also provides ongoing group mentorship for early career researchers from underrepresented backgrounds.
Similarly, to improve accessibility to the Alzheimer's Association International Conference® (AAIC®), the largest and most influential international meeting dedicated to advancing dementia science, registration rates are adjusted based on country classifications by income level.
In 2021, the Association announced a partnership with the National Football League Alumni Association (NFLA) and since that time, has convened two annual Black Men's Brain Health Conference events, bringing together scientists, clinicians, former and current athletes, and community members to understand and address issues that lead to poor brain health outcomes in Black men. The Black Men's Brain Health (BMBH) Emerging Scholars program, a signature component of the conference, recruits and trains the next generation of community-engaged scientists to advance Black men's brain health in pursuit of reducing brain health disparities.
To provide a platform for researchers focused on those disproportionately affected by Alzheimer's or another dementia, in 2021 and 2022, we organized Promoting Diverse Perspectives: Addressing Health Disparities Related to Alzheimer's and All Dementias, the first two national conferences dedicated specifically to addressing disparities and promoting equity in dementia science. Cosponsored by the National Institute on Aging (NIA) and guided by the NIA Health Disparities Research Framework, this annual conference convenes multidisciplinary researchers and drives collaboration across the dementia field.
The Association supports the Latinos & Alzheimer's Symposium, which explores disparities in dementia risk, early detection and care in Latino populations. The incidence of dementia in the Latino population is one and a half times that of the White population, making this topic particularly important in the Latino community.
National Association of Hispanic Nurses
The National Association of Hispanic Nurses (NAHN) is the leading professional society of Latino nurses. With a national headquarters and more than 40 local chapters, the organization represents, advocates for and educates Latino nurses across the country.
As a critical partner, NAHN has worked with the Alzheimer's Association to bring together outreach specialists to test a national intervention called El Consorcio (The Consortium) to accelerate representation of Latinos in four sites of a large clinical trial. The consortium is funded through a grant from the NIA and administered by the University of California San Francisco.
The intervention brought nurses from NAHN and Association professionals to diverse Latino communities to give presentations about the importance of participation in clinical trials and introduce the AHEAD trial, which tests whether an investigational treatment can slow or stop the earliest brain changes in people at the highest risk. The hypothesis of the NAHN research is that forming relationships with trusted community organizations can help provide the necessary infrastructure to rapidly recruit diverse participants into clinical trials.
"The Hispanic community is historically underrepresented in clinical trials across the board," said NAHN President Adrianna Nava, Ph.D., MPA, MSN, RN. "It is so important that we find innovative ways to increase Latino participation in dementia research. We are thrilled to have partnered with the Alzheimer's Association to make that happen."