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Dementia research lacks appropriate representation of diverse groups who often face substantial adversity and greater risk of dementia. Current research participants are primarily well-resourced, non-Hispanic White, cisgender adults who live close to academic medical centers where much of the research is based. Consequently, the field faces a knowledge gap about Alzheimer's-related risk factors in those other groups. The Alzheimer's Association hosted a virtual conference on June 14-16, 2021, supported in part by the National Institute on Aging (R13 AG072859-01), focused on health disparities. The conference was held entirely online and consisted of 2 days of core programming and a day of focused meetings centered on American Indian and Alaska Natives and on LGBTQIA+ populations. Over 1300 registrants attended discussions focused on the structural and systemic inequities experienced across diverse groups, as well as ways to investigate and address these inequities.

India is a large middle-income country and has surpassed China in overall population, comprising 20% of the global population (over 1.43 billion people). India is experiencing a major demographic shift in its aging population. Chronic diseases are common among older adults and can be persistent over the life course, lead to the onset of disability, and be costly. Among older adults in India, the existence of multiple comorbid chronic conditions (i.e., multimorbidity) is rapidly growing and represents a burgeoning public health burden. Prior research identified greater rates of multimorbidity (e.g., overweight/obesity diabetes, hypertension, cardiovascular disease, stroke, and malignancies) in minority populations in the United States (U.S.); however, limited studies have attempted to characterize multimorbidity among older adult sub-populations residing in India. To address this gap, we conducted a narrative review of studies on multimorbidity using the data from the Longitudinal Aging Study of India (LASI), the largest nationally representative longitudinal survey study of adults in India. Our definition of multimorbidity was the presence of more than two conditions in the same person. Our findings, based on 15 reviewed studies, aim to (1) characterize the definition and measurement of multimorbidity and to ascertain its prevalence in ethnically and culturally diverse sub-populations in India; (2) identify adverse outcomes associated with multimorbidity in the Indian adult population; and (3) identify gaps, opportunities, and future directions.

Clinical trials for Alzheimers disease (AD) are slower to enroll study participants, take longer to complete, and are more expensive than trials in most other therapeutic areas. The recruitment and retention of a large number of qualified, diverse volunteers to participate in clinical research studies remain among the key barriers to the successful completion of AD clinical trials. An advisory panel of experts from academia, patient-advocacy organizations, philanthropy, non-profit, government, and industry convened in 2020 to assess the critical challenges facing recruitment in Alzheimers clinical trials and develop a set of recommendations to overcome them. This paper briefly reviews existing challenges in AD clinical research and discusses the feasibility and implications of the panels recommendations for actionable and inclusive solutions to accelerate the development of novel therapies for AD.

INTRODUCTION: This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern-the underrepresentation of Latino persons in Alzheimers disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework-the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment-which considers multi-level barriers and their impact on Latino trial recruitment. METHODS: Based on a review of the peer-reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. RESULTS: In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual- and family-level factors (micro-level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional- and policy-level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare-related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. CONCLUSION: Future scientific work should apply and test the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.

The Alzheimer's Association hosted the second Latinos & Alzheimer's Symposium in May 2021. Due to the COVID-19 pandemic, the meeting was held online over 2 days, with virtual presentations, discussions, mentoring sessions, and posters. The Latino population in the United States is projected to have the steepest increase in Alzheimer's disease (AD) in the next 40 years, compared to other ethnic groups. Latinos have increased risk for AD and other dementias, limited access to quality care, and are severely underrepresented in AD and dementia research and clinical trials. The symposium highlighted developments in AD research with Latino populations, including advances in AD biomarkers, and novel cognitive assessments for Spanish-speaking populations, as well as the need to effectively recruit and retain Latinos in clinical research, and how best to deliver health-care services and to aid caregivers of Latinos living with AD.

Abstract: Black/African Americans represent 13% of the population, yet account for more than 24% of COVID-19 deaths. Emerging evidence indicates that Black Americans are receiving COVID-19 vaccines at lower rates than whites. However, there is minimal information about why vaccination rates are lower. To address this gap, we examined the effects of the COVID-19 pandemic among Black Americans, with an emphasis on understanding trust and vaccine uptake. Data were collected between July and September 2020 using 8 virtual focus groups in Detroit, MI and San Francisco Bay Area, CA with 33 older Black Americans and 11 caregivers of older Black Americans with cognitive impairment. Inductive/deductive content analysis was used to identify themes. The first theme pointed to a sense of feeling abandoned by healthcare providers and the government at local and state levels, which exacerbated uncertainty and fear about the vaccine and in general. The second theme emphasized a sense of deep distrust towards healthcare providers and the government, especially during the pandemic. The third theme pointed to a reluctance in receiving the vaccine because of distrust of pharmaceutical companies and the government, as well as misinformation and the rapid speed of vaccine development. These findings suggest that underlying systemic issues need to be addressed immediately to accelerate vaccine uptake among older Black Americans. New initiatives are needed to foster trust and address abandonment by healthcare and government systems. In addition, public health campaigns with reliable information about the COVID-19 vaccine are needed.

Abstract: Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to a legacy of racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.

INTRODUCTION: This ongoing, prospective study examines the effectiveness of methods used to successfully recruit and retain 238 Black older adults in a longitudinal, observational Alzheimer's disease (AD) study. METHODS: Recruitment strategies included traditional media, established research registries, speaking engagements, community events, and snowball sampling. Participants were asked to complete an annual office testing session, blood‐based biomarker collection, optional one‐time magnetic resonance imaging (MRI) scan, and community workshop. RESULTS: Within the first 22 months of active recruitment, 629 individuals expressed interest in participating, and 238 enrolled in the ongoing study. Of the recruitment methods used, snowball sampling, community events, and speaking engagements were the most effective. DISCUSSION: The systemic underrepresentation of Black participants in AD research impacts the ability to generalize research findings and determine the effectiveness and safety of disease‐modifying treatments. Research to slow, stop, or prevent AD remains a top priority but requires diversity in sample representation. Highlights: Provide flexible appointments in the evening or weekends, offering transportation assistance, and allowing participants to complete study visits at alternative locations, such as senior centers or community centers.Continuously monitor and analyze recruitment data to identify trends, challenges, and opportunities for improvement.Implement targeted strategies to recruit participants who are underrepresented based on sex, gender, or education to increase representation.Diversify the research team to include members who reflect the racial and cultural backgrounds of the target population, to enhance trust and rapport with prospective participants. [ABSTRACT FROM AUTHOR]

The article discusses the need for greater inclusion and representation of underrepresented populations in Alzheimer's disease (AD) clinical trials. It emphasizes the importance of educating patients, especially those from marginalized communities, about the efficacy and safety of anti-amyloid immunotherapies. The article also highlights the disparities in AD clinical trials, with Blacks/African Americans and Hispanics/Latinos being underrepresented despite being more likely to have dementia. It calls for a better understanding of the environmental and sociocultural factors that contribute to these disparities and emphasizes the need for inclusive research to address health disparities. The Alzheimer's Association is actively working to improve representation in clinical trials and provide culturally relevant care and support. [Extracted from the article]

The development of a skilled research workforce in aging is fundamental to understanding conditions associated with growing older and extending healthy, active years of life. The National Institutes of Health (NIH) supports the training of health scientists, and its National Institute on Aging (NIA) prioritizes the professional development of investigators with an interest in aging. Since 1987, NIA's Summer Institute on Aging Research, renamed the Butler-Williams (B-W) Scholars Program in 2013, has offered an intensive one-week experience on issues, opportunities, and challenges of research on aging, with emphasis on disparities and health equity. The first 30 years of the Program are described in this report, including its history, selected curriculum highlights, Scholar outcomes, and qualitative data from faculty, and the program's impact on the training, growth, and development of scientists in aging research. Questions raised over a decade ago by the Committee on the Future Health Care Workforce for Older Americans Board on Health Care Services are revisited, and recommendations for the future are provided. This important Program remains an exemplar for the training and development of health scientists for careers that advance biomedical research and emphasize an equitable understanding of factors related to extending healthy years of life. [ABSTRACT FROM AUTHOR]

Investigated the relationship between binge drinking and other substance use among college students, using data from the 1995 National College Health Risk Behavior Survey. Current binge drinkers were significantly more likely than non-binge drinkers to report current or lifetime use of other substances. The more often they drank, the more likely they were to report current marijuana and cigarette use. (SM)

Summarizes results from the 1997 Youth Risk Behavior Surveillance System and trends from 1991 to 1997 in selected risk behaviors. Results indicate that many high school students still practice behaviors that place them at risk for serious health problems, with some behaviors more likely among particular subgroups. Some behaviors vary considerably from city to city and state to state. (SM)

Topics discussed at the "Leveraging Existing Data and Analytic Methods for Health Disparities Research Related to Aging and Alzheimer's Disease and Related Dementias" workshop, held by Duke University and the Alzheimer's Association with support from the National Institute on Aging, are summarized. Ways in which existing data resources paired with innovative applications of both novel and well‐known methodologies can be used to identify the effects of multi‐level societal, community, and individual determinants of race/ethnicity, sex, and geography‐related health disparities in Alzheimer's disease and related dementia are proposed. Current literature on the population analyses of these health disparities is summarized with a focus on identifying existing gaps in knowledge, and ways to mitigate these gaps using data/method combinations are discussed at the workshop. Substantive and methodological directions of future research capable of advancing health disparities research related to aging are formulated. [ABSTRACT FROM AUTHOR]

Background: U.S. POINTER is a randomized, controlled, multi‐domain 2‐year clinical trial in 2000 older Americans to slow cognitive decline via culturally‐appropriate healthy lifestyle interventions. Participant diversity is essential, with targeted enrollment of 50% women and 23% enrollees from communities of color (reflecting the U.S. population in the 2016 Census). Other recruitment priorities include individuals with lower traditional educational attainment, older age within our eligibility range (75‐79 years old), and rural residence. This diversification aims to (1) better represent our communities particularly affected by ADRD, and (2) help ensure that this intervention can be successful across broad cultural differences for long‐term implementation. Method: U.S. POINTER developed and deployed a community‐based recruitment strategy via a centrally‐coordinated grassroots outreach team at each site. The strategy includes evidence‐based and innovative community engagement tactics and is a multi‐faceted, agile approach that accounts for variations in: demographics across sites' respective communities; levels of home institution‐community connectedness/integration; and outreach experience across team members. Tactics include: employing a multi‐tiered outreach framework that leverages existing community networks in order to augment team outreach capacity and ensure continuous community engagement; innovating approval procedures with central IRB to reduce barriers to producing timely outreach materials as needed; and standardizing onboarding for new team members across experience levels. Result: The POINTER grassroots recruitment strategy has accounted for 22% of the trial's overall enrollment. As of Jan 18, 2023, POINTER has enrolled 1879 participants, 29% of whom are from communities of color, 30% are men, 30% do not hold college degrees, and 13% are over 75 years old. Lessons learned include navigating local institutional reputations, retaining consistent team personnel for long‐term relationship building, setting trajectories for mutually‐beneficial long‐term community investment, and employing a formidable equity lens at all levels of staffing, outreach, and intervention design to better identify and eliminate barriers to participation, amongst others. Conclusion: Key recommendations emerging from recruitment success in enrolling a diverse cohort include: approaching recruitment with long‐term vision and commitment toward community investment; leveraging existing community assets and working in partnership with respected community voices; and employing consistent, diverse, multimodal community outreach touchpoints for traction. [ABSTRACT FROM AUTHOR]