Understanding barriers to well-child visit attendance among racial and ethnic minority parents.

OBJECTIVES: To assess racial and ethnic minority parents' perceptions about barriers to well-child visit attendance. METHODS: For this cross-sectional qualitative study, we recruited parents of pediatric primary care patients who were overdue for a well-child visit from the largest safety net healthcare organization in central Massachusetts to participate in semi-structured interviews. The interviews focused on understanding potential knowledge, structural, and experiential barriers for well-child visit attendance. Interview content was inductively coded and directed content analysis was performed to identify themes. RESULTS: Twenty-five racial and ethnic minority parents participated; 17 (68%) of whom identified Spanish as a primary language spoken at home. Nearly all participants identified the purpose, significance, and value of well-child visits. Structural barriers were most cited as challenges to attending well-child visits, including parking, transportation, language, appointment availability, and work/other competing priorities. While language emerged as a distinct barrier, it also exacerbated some of the structural barriers identified. Experiential barriers were cited less commonly than structural barriers and included interactions with office staff, racial/ethnic discrimination, appointment reminders, methods of communication, wait time, and interactions with providers. CONCLUSIONS: Racial and ethnic minority parents recognize the value of well-child visits; however, they commonly encounter structural barriers that limit access to care. Furthermore, a non-English primary language compounds the impact of these structural barriers. Understanding these barriers is important to inform health system policies to enhance access and delivery of pediatric care with a lens toward reducing racial and ethnic-based inequities.

Cutaneous Intravascular Hematolymphoid Entities: A Review.

Intravascular lymphomas are rare disease conditions that exhibit neoplastic lymphoid cells that are confined mainly to the lumens of small capillaries and medium-sized vessels. The majority of the intravascular lymphomas are of B-cell origin, but they can include NK/T-cell and CD30+ immunophenotypes. In the histologic differential diagnosis are benign proliferations such as intralymphatic histiocytosis and intravascular atypical CD30+ T-cell proliferation. In this review, we discuss the clinical, histopathologic, and molecular findings of intravascular B-cell lymphoma, intravascular NK/T-cell lymphoma, intralymphatic histiocytosis, and benign atypical intravascular CD30+ T-cell proliferation.

Attitudes and Perceptions about Brain Donation Among African Americans: Implications for Recruitment into Alzheimer's Disease Research.

The objective of this study was to investigate attitudes toward brain donation and perceptions of medical research that influence brain donation among African Americans. Cross-sectional surveys were administered to African American community members (n = 227). Findings indicate that only 27% of respondents were willing to donate their brain. As medical mistrust was not found to be a significant barrier to research participation, there may be opportunity to increase brain donation by providing information about Alzheimer's disease and brain donation to potential donors and their families so that informed decisions about participating in research can be made.

Building a Community Partnership for the Development of Health Ministries Within the African American Community: The Triad Pastors Network.

African Americans continue to have worse health outcomes despite attempts to reduce health disparities. This is due, in part, to inadequate access to healthcare, but also to the health care and medical mistrust experienced by communities of color. Churches and worship centers have historically served as cultural centers of trusted resources for educational, financial, and health information within African American communities and a growing number of collaborations have developed between academic institutions and community/faith entities. Herein, we describe the infrastructure of a true and sustainable partnership developed with > 100 prominent faith leaders within the Piedmont Triad region of North Carolina for the purpose of developing or expanding existing health ministries within houses of worship, to improve health literacy and overall health long-term. The Triad Pastors Network is an asset-based partnership between the Maya Angelou Center for Health Equity at Wake Forest University School of Medicine and faith leaders in the Piedmont Triad region of North Carolina that was created under the guiding principles of community engagement to improve health equity and decrease health disparities experienced by African American communities. A partnership in which co-equality and shared governance are the core of the framework provides an effective means of achieving health-related goals in a productive and efficient manner. Faith-based partnerships are reliable approaches for improving the health literacy needed to address health disparities and inequities in communities of color.

Assessing Gender Differences on the Impact of COVID-19 on the Medical and Social Needs of Dementia Caregivers.

Our analyses aimed to assess health status and critical needs of caregivers of persons with dementia (PWD) during the COVID-19 pandemic by gender. Between March 2021 and August 2021, respondents (n = 267) were recruited from an Alzheimer's disease (AD) listserv at an US academic center to complete a questionnaire to capture sociodemographic data, caregiving characteristics, health status, status of COVID-19 testing, and COVID-19 preventative practices during the pandemic. Women caregivers reported needing assistance with caregiving responsibilities, whereas men caregivers needed assistance with health and social resources. More men caregivers also reported psychological distress compared to women caregivers. Our findings indicated significant differences in the resources needed and psychological distress of women and men who cared for PWD during the COVID-19 pandemic. The development of recommendations and resources with both men and women caregivers in mind may be beneficial to support informal caregivers during emergency situations.

The Black Men's Health Forum: Improving Health Knowledge and Willingness to Participate in Research.

The Black Men's Health Forum, a 6-week online health education intervention for African American men and accountability partners of African American men, was conducted to increase awareness of health issues that disproportionately affect African American men. In this article, we describe the intervention and report on the immediate benefits of the intervention, including changes in health knowledge and perception of research participation. Participants completed a pre-evaluation prior to participating in the forum and a post-evaluation after each session to capture data on sociodemographic information, medical history, health knowledge, and health behaviors. A total of 60 participants (30 African American men and 30 accountability partners) completed the forum. African American men had a mean age of 61.1 years while accountability partners had a mean age of 57.6 years. Overall health knowledge increased by 6.9 points for African American men and 2.8 points for accountability partners. Before the forum began, nine African American men reported ever participating in a research study. The proportion of African American men who reported that they would definitely participate in research in the next 12 months after participating in the forum increased by 40%. Through culturally tailored programming, the Black Men's Health Forum increased access to health information as well as African American male medical professionals and health researchers for African American men in the community. Exposure to health information resulted in significant increases in health knowledge and willingness to participate in health research among African American men.

Genetic analyses in multiplex families confirms chromosome 5q35 as a risk locus for Alzheimer's Disease in individuals of African Ancestry.

There is a paucity of genetic studies of Alzheimer Disease (AD) in individuals of African Ancestry, despite evidence suggesting increased risk of AD in the African American (AA) population. We performed whole-genome sequencing (WGS) and multipoint linkage analyses in 51 multi-generational AA AD families ascertained through the Research in African American Alzheimer Disease Initiative (REAAADI) and the National Institute on Aging Late Onset Alzheimer's disease (NIA-LOAD) Family Based Study. Variants were prioritized on minor allele frequency (<0.01), functional potential of coding and noncoding variants, co-segregation with AD and presence in multi-ancestry ADSP release 3 WGS data. We identified a significant linkage signal on chromosome 5q35 (HLOD=3.3) driven by nine families. Haplotype segregation analysis in the family with highest LOD score identified a 3'UTR variant in INSYN2B with the most functional evidence. Four other linked AA families harbor within-family shared variants located in INSYN2B's promoter or enhancer regions. This AA family-based finding shows the importance of diversifying population-level genetic data to better understand the genetic determinants of AD on a global scale.

Neuropsychiatric features in a multi-ethnic population with Alzheimer disease and mild cognitive impairment.

BACKGROUND: Alzheimer disease (AD) is more prevalent in African American (AA) and Hispanic White (HIW) compared to Non-Hispanic White (NHW) individuals. Similarly, neuropsychiatric symptoms (NPS) vary by population in AD. This is likely the result of both sociocultural and genetic ancestral differences. However, the impact of these NPS on AD in different groups is not well understood. METHODS: Self-declared AA, HIW, and NHW individuals were ascertained as part of ongoing AD genetics studies. Participants who scored higher than 0.5 on the Clinical Dementia Rating (CDR) Scale (CDR) were included. Group similarities and differences on Neuropsychiatric Inventory Questionnaire (NPI-Q) outcomes (NPI-Q total score, NPI-Q items) were evaluated using univariate ANOVAs and post hoc comparisons after controlling for sex and CDR stage. RESULTS: Our sample consisted of 498 participants (26% AA; 30% HIW; 44% NHW). Overall, NPI-Q total scores differed significantly between our groups, with HIW having the highest NPI-Q total scores, and by AD stage as measured by CDR. We found no significant difference in NPI-Q total score by sex. There were six NPI-Q items with comparable prevalence in all groups and six items that significantly differed between the groups (Anxiety, Apathy, Depression, Disinhibition, Elation, and Irritability). Further, within the HIW group, differences were found between Puerto Rican and Cuban American Hispanics across several NPI-Q items. Finally, Six NPI-Q items were more prevalent in the later stages of AD including Agitation, Appetite, Hallucinations, Irritability, Motor Disturbance, and Nighttime Behavior. CONCLUSIONS: We identified differences in NPS among HIW, AA, and NHW individuals. Most striking was the high burden of NPS in HIW, particularly for mood and anxiety symptoms. We suggest that NPS differences may represent the impact of sociocultural influences on symptom presentation as well as potential genetic factors rooted in ancestral background. Given the complex relationship between AD and NPS it is crucial to discern the presence of NPS to ensure appropriate interventions.

Gender, Age and COVID-19 Vaccination Status in African American Adult Faith-Based Congregants in the Southeastern United States.

OBJECTIVES: The COVID-19 pandemic has revealed significant differences in COVID-19 vaccination rates, with African Americans reporting lower rates compared to other racial and ethnic groups. The purpose of these analyses was to assess whether COVID-19 vaccination status differed according to age in a sample of 1,240 African American adult congregants of faith-based organizations ages 18 years or older, and to examine whether this association was moderated by gender. DESIGN: We developed and administered a 75-item cross-sectional survey, the Triad Pastor's Network COVID-19 and COVID-19 Vaccination survey, to assess experiences and perceptions regarding the COVID-19 virus and vaccines. We assessed the association between age and having received > 1 dose of a COVID-19 vaccine using unadjusted and multivariable binary logistic regression models, and the interaction of age and gender with COVID-19 vaccination status in a multivariable model. RESULTS: Approximately 86% of participants reported having received ≥ 1 dose of a COVID-19 vaccine. The mean age (standard deviation) of the sample was 51.33 (16.62) years, and 70.9% of the sample was comprised of women. The age by gender interaction term in the multivariable model was significant (p = 0.005), prompting additional analyses stratified by gender. In women, increased age was significantly associated with higher odds of COVID-19 vaccination (odds ratio = 1.09; 95% Confidence Interval 1.06, 1.11; p < 0.001). In men, the association was not significant (p = 0.44). CONCLUSIONS: Older age was positively associated with COVID-19 vaccination in African American women, but not African American men, which may inform strategies to increase vaccination rates.

Assessing the Role of Trust in Public Health Agencies and COVID-19 Vaccination Status Among a Community Sample of African Americans in North Carolina.

BACKGROUND: Mistrust of the government and medical establishments are prominent reasons for vaccine hesitancy among African Americans (AAs). As COVID-19 research evolves in real time with some uncertainties remaining, AA communities may be less trusting of public health agencies. The purpose of these analyses was to assess the association between trust in public health agencies that recommend the COVID-19 vaccination and COVID-19 vaccination status among AAs in North Carolina. METHODS: A 75-item cross-sectional survey, the Triad Pastors Network COVID-19 and COVID-19 Vaccination survey, was developed and administered to African Americans in North Carolina. Multivariable logistic regression was used to examine the association between levels of trust in public health agencies who recommend the COVID-19 vaccine and COVID-19 vaccination status among AAs. RESULTS: Of the 1157 AAs included in these analyses, approximately 14% of AAs had not received the COVID-19 vaccine. These findings indicated that lower levels of trust in public health agencies significantly decreased the odds of getting the COVID-19 vaccination compared to those with higher levels of trust among AAs. The most trusted source for information on COVID-19 included federal agencies among all respondents. Among the vaccinated, primary care physicians were another trusted source of information. Pastors were another trusted source for those willing to be vaccinated. CONCLUSIONS: Despite the majority of the respondents in this sample receiving the COVID-19 vaccine, subgroups of AAs remain unvaccinated. Federal agencies have a high level of trust among AA adults; however, innovative approaches are needed to reach AAs who remain unvaccinated.

Leveraging African American family connectors for Alzheimer's disease genomic studies.

INTRODUCTION: The underrepresentation of African Americans (AAs) in Alzheimer's disease (AD) research may limit potential benefits from translational applications. This article describes an approach to recruit AA families into an AD genomic study and characteristics of seeds (family connectors) used to overcome recruitment barriers of AA families into AD research. METHODS: A four-step outreach and snowball sampling approach relying on family connectors was used to recruit AA families. Descriptive statistics of a profile survey were gathered to understand the demographic and health characteristics of family connectors. RESULTS: Twenty-five AA families (117 participants) were enrolled in the study via family connectors. Most family connectors self-identified as female (88%), were 60 years of age or older (76%), and attained post-secondary education (77%). DISCUSSION: Community-engaged strategies were essential to recruit AA families. Relationships between study coordinators and family connectors build trust early in the research process among AA families. HIGHLIGHTS: Community events were most effective for recruiting African American families. Family connectors were primarily female, in good health, and highly educated. Systematic efforts by researchers are necessary to "sell" a study to participants.

Self-reported experiences of discrimination and incident dementia.

INTRODUCTION: Discrimination negatively impacts health and may contribute to racial/ethnic disparities in dementia risk. METHODS: Experiences of lifetime and everyday discrimination were assessed among 6509 Multi-Ethnic Study of Atherosclerosis (MESA) participants. We assessed the association of discrimination with incidence of dementia including adjustment for important risk factors, cohort attrition, and we assessed for effect modification by race/ethnicity. RESULTS: Prevalence of any lifetime discrimination in MESA was 42%, highest among Black adults (72%). Over a median 15.7 years of follow-up, there were 466 incident cases of dementia. Lifetime discrimination, but not everyday discrimination, was associated with incident dementia (Wald p = 0.03). Individuals reporting lifetime discrimination in ≥2 domains (compared to none) had greater risk for dementia (hazard ratio: 1.40; 95%: 1.08, 1.82) after adjustment for sociodemographic, clinical, and behavioral risk factors. Associations did not differ by race/ethnicity. CONCLUSIONS: These findings demonstrate an association of greater experiences of lifetime discrimination with incident dementia.

Feasibility of dual-task gait to estimate Alzheimer's related cognitive decline in Down syndrome.

INTRODUCTION: The striatum and frontal lobes have been shown to have early Alzheimer's disease (AD) neuropathology and are critical for motor and cognitive function. We hypothesized gait would be associated with early-stage dementia in Down syndrome (DS), a cohort at risk for AD. METHODS: Twenty-eight participants with DS were enrolled in the study. Participants walked at their self-selected pace and while completing a dual task (counting, obstacle, or counting+obstacle). RESULTS: All participants were able to complete the self-paced condition and 78.57-96.42% completed the dual-task conditions. There was a trend for greater dual-task effects on gait velocity based on dementia diagnosis. Gait velocity had stronger associations with clinical dementia assessments than age or diagnosis. DISCUSSION: A dual-task gait paradigm is feasible to conduct with adults with DS and is associated with age and cognitive impairment. Dual-task gait may serve as an indicator of early stage dementia in DS.

Subjective Memory Complaints Are an Important Surrogate for Objective Cognitive Performance in African Americans.

PURPOSE: Subjective memory complaints (SMCs) have been shown to be associated with lower neuropsychological test scores cross-sectionally. However, it remains unclear whether such findings hold true for African American (AA) older adults. METHODS: Baseline visit data from the National Alzheimer's Coordinating Center database collected from September 2005 to March 2018 were used. Generalized linear mixed models specifying binomial distributions were used to examine how neuropsychological test scores affect the likelihood of reporting SMCs. PATIENTS: Inclusion criteria were participants who reported AA as their primary race, 60 to 80 years of age, were cognitively unimpaired, and had a Mini-Mental Status Examination score ≥26. A total of 1021 older AA adults without missing data met the criteria. RESULTS: A total of 258 participants reported a SMC. SMCs were more likely with lower scores on measures of episodic memory and processing; however, SMCs were also more likely with higher scores on a measure of working memory. Working memory appeared to mediate reporting of SMC among participants with lower episodic memory scores. DISCUSSION: These findings demonstrate that SMCs are associated with lower scores on objective neuropsychological measures among older AAs. Additional work is needed to determine whether SMCs are further associated with a risk for clinical transition to mild cognitive impairment or dementia among AA older adults.

Behaviors Characteristic of Autism Spectrum Disorder in a Geriatric Cohort With Mild Cognitive Impairment or Early Dementia.

INTRODUCTION: Autism spectrum disorder (ASD) represents a heterogenous cluster of clinical phenotypes that are classically diagnosed by the time of adolescence. The possibility of late-life emergence of ASD has been poorly explored. METHODS: To more fully characterize the possibility of late-life emergence of behaviors characteristic of ASD in mild cognitive impairment and AD, we surveyed caregivers of 142 older persons with cognitive impairment from the University of Kentucky Alzheimer's Disease Center Longitudinal Cohort using the Gilliam Autism Rating Scale-2. RESULTS: Participants with high autism index ratings (autism "possible/very likely," n=23) reported significantly (statistically and clinically) younger age at the onset of cognitive impairment than those who scored in the autism "unlikely" range (n=119): 71.14±10.9 vs. 76.65±8.25 (P=0.034). In addition, those in the autism "possible/very likely" group demonstrated advanced severity of cognitive impairment, indicated by the Clinical Dementia Rating Scale Sum of Boxes scores. DISCUSSION: Data demonstrate that ASD behaviors may seem de novo of degenerative dementia and such behaviors are more prevalent in those with early onset dementia. Further work elucidating a connection between ASD and dementia could shed light on subclinical forms of ASD, identify areas of shared neuroanatomic involvement between ASD and dementias, and provide valuable insights that might hasten the development of therapeutic strategies.

Perspectives of African American Older Adults on Brain Health: "Brains Get Tired Too".

BACKGROUND: Statistics suggest that African Americans have a disproportionately high prevalence of Alzheimer disease (AD), yet are less likely to enroll in AD clinical trials than white individuals. Although research has previously identified various barriers to participation, relatively little is known about how to overcome these barriers and engage African American individuals in AD research. The purpose of this study is to better understand how African Americans conceptualize brain health and their ability to influence healthy brain aging. METHODS: Three African American community advocates each facilitated a small group of African American participants over 8 to 10 sessions of a photovoice process involving discussion and sharing of images focused on brain health. Sessions were audiotaped and transcribed verbatim and photographs were uploaded. FINDINGS: Participants recognized a diversity of what brain health can mean and indicated an interconnectedness between brain health and its influences. Key factors that were identified by group members as key to brain health included lifestyle factors, activity, and engagement and nature, resiliency, and positivity. DISCUSSION: These emic insights into perceptions of brain health may represent important foci for targeted messaging strategies to promote brain health and research engagement within the African American population.

Global Cerebral Atrophy Detected by Routine Imaging: Relationship with Age, Hippocampal Atrophy, and White Matter Hyperintensities.

BACKGROUND AND PURPOSE: Interpreting the clinical significance of moderate-to-severe global cerebral atrophy (GCA) is a conundrum for many clinicians, who visually interpret brain imaging studies in routine clinical practice. GCA may be attributed to normal aging, Alzheimer's disease (AD), or cerebrovascular disease (CVD). Understanding the relationships of GCA with aging, AD, and CVD is important for accurate diagnosis and treatment decisions for cognitive complaints. METHODS: To elucidate the relative associations of age, moderate-to-severe white matter hyperintensities (WMHs), and moderate-to-severe medial temporal lobe atrophy (MTA), with moderate-to-severe GCA, we visually rated clinical brain imaging studies of 325 participants from a community based sample. Logistic regression analysis was conducted to assess the relations of GCA with age, WMH, and MTA. RESULTS: The mean age was 76.2 (±9.6) years, 40.6% were male, and the mean educational attainment was 15.1 (±3.7) years. Logistic regression results demonstrated that while a 1-year increase in age was associated with GCA (OR = 1.04; P = .04), MTA (OR = 3.7; P < .001), and WMH (OR = 8.80; P < .001) were strongly associated with GCA in our study population. Partial correlation analysis showed that the variance of GCA explained by age is less than the variance attributed to MTA and WMH (r = .13, .21, and .43, respectively). CONCLUSIONS: Moderate-to-severe GCA is most likely to occur in the presence of AD or CVD and should not be solely attributed to age when evaluating clinical imaging findings in the workup of cognitive complaints. Developing optimal diagnostic and treatment strategies for cognitive decline in the setting of GCA requires an understanding of its risk factors in the aging population.

Challenges and Considerations Related to Studying Dementia in Blacks/African Americans.

Blacks/African Americans have been reported to be ∼2-4 times more likely to develop clinical Alzheimer's disease (AD) compared to Whites. Unfortunately, study design challenges (e.g., recruitment bias), racism, mistrust of healthcare providers and biomedical researchers, confounders related to socioeconomic status, and other sources of bias are often ignored when interpreting differences in human subjects categorized by race. Failure to account for these factors can lead to misinterpretation of results, reification of race as biology, discrimination, and missed or delayed diagnoses. Here we provide a selected historical background, discuss challenges, present opportunities, and suggest considerations for studying health outcomes among racial/ethnic groups. We encourage neuroscientists to consider shifting away from using biologic determination to interpret data, and work instead toward a paradigm of incorporating both biological and socio-environmental factors known to affect health outcomes with the goal of understanding and improving dementia treatments for Blacks/African Americans and other underserved populations.