Rosalie Schumann’s research while affiliated with University of Pennsylvania and other places

Research on caregivers suggests interpersonal contact with persons with Alzheimer’s disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in antistigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge, and AD stigma, we can develop improved ways of reducing stigma and avoid unintended consequences. In a factorial design experiment, 2,371 participants read a vignette describing a fictional person; the vignette varied on clinical symptom stage, AD biomarker result, and treatment availability. Multivariable analyses assessed the effects of caregiver experience, interpersonal contact, and different domains of disease-oriented knowledge on modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS) outcomes. Interaction analyses tested how clinical features may modify those associations. AD caregiver experience was associated with higher reactions on six of the seven FS-ADS domains. Disease-oriented knowledge, independent of content domain, did not substantially affect those associations. However, knowledge of caregiving, treatment, and life impact were associated with lower FS-ADS scores, and knowledge about disease course and risk factors were associated with higher reactions on FS-ADS domains. Knowledge of treatment modified reactions to symptoms and treatment availability. Knowledge of disease course modified reactions to a biomarker result. AD caregiver experience and interpersonal contact did not modify associations between clinical characteristics and FS-ADS domains. Distinct associations among different domains of AD knowledge and stigma outcomes should be considered when developing antistigma campaigns. Failure to do so risks worsening rather than alleviating AD stigma.

Background Social and structural determinants of health (SSDoH) must be measured longitudinally in order to better understand the effects of lived experiences on the trajectories of Alzheimer’s disease and related dementias (ADRD) outcomes. We repeated administration of an SSDOH survey to examine response rates and response consistency in a sample of cognitively typical older adults. Method One online survey and one follow‐up survey were administered to cognitively unimpaired participants (n = 135) in the UPenn Alzheimer’s Disease Research Center clinical cohort ∼1.5 years apart. The ∼225 items covered the following categories: (1) Education, (2) Economic Status and Strain, (3) Occupation, (4) Stressors and Subjective Stress, (6) Subjective Social Support and Status, and (7) Sociodemographic data, which included age, race, language, disability, neighborhood, sex, sexual orientation, and gender identity questions. We summarize pilot data on item and instrument completion rates and changes in participant responses. Result 81 of 135 participants completed the follow‐up survey, which is a response rate of 60%. Most participants completed most items. The two measures with the lowest completion rates were: Calgary Charter on Health Literacy Scale (74/81) and the Perceived Stress Scale (69/81). Some participants who did not complete a given measure during the first administration did complete that measure during the second. In addition, responses on most measures, single items or multi‐item scales, varied between the administrations. Some responses appeared to change because of ambiguity in the item’s phrasing, administration process, or reflected changes over time in the constructs being assessed. Conclusion Overall, it was feasible to repeatedly administer a survey of SSDoH items to a group of cognitively unimpaired older adults. The response rate was reasonable but lower than expected in a group of volunteer research participants indicating that multiple modes of administration may be useful for increasing engagement. Differences in the data produced from repeated administration of measures was useful in identifying ambiguity in items and methods that aid in improving research rigor and reproducibility. The data are also useful in understanding the temporal stability or instability of SSDOH experiences among these research participants.

Objective: We urgently need to understand Alzheimer's disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black participants and test how AD biomarker test results may affect this stigma. Design: We surveyed a sample of 1,150 self-identified Black adults who were randomized to read a vignette describing a fictional person, who was described as either having a positive or negative biomarker test result. After reading the vignette, participants completed the modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). We compared FS-ADS scores between groups defined by age, gender, and United States Census region. We examined interactions between these groupings and AD biomarker test result. Results: Participants over age 65 had lower scores (lower stigma) on all 7 FS-ADS domains compared to those under 65: structural discrimination, negative severity attributions, negative aesthetic attributions, antipathy, support, pity, and social distance. In the biomarker positive condition, worries about structural discrimination were greater than in the biomarker negative condition and statistically similar in the two age groups (DOR, 0.39 [95%CI, 0.22-0.69]). This pattern of results was similar for negative symptom attributions (DOR, 0.51 [95%CI, 0.28-0.90]). Conclusion: While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adults.

Background Scientists must be able to characterize and measure social and structural determinants of health (SSDoH) in order to study their influences on Alzheimer’s disease and related dementias outcomes. Constructing measures that capture this heterogeneity is challenging. We summarize SSDoH questions that participants skipped and critiqued and our response. Method An online survey of 225 items capturing SSDoH was administered to cognitively unimpaired participants (n = 135) in the UPenn Alzheimer’s Disease Research Center clinical cohort. Self‐report questionnaire categories were: (1) Education, (2) Occupation, (3) Economic Status and Strain, (4) Stressors and Subjective Stress, (6) Subjective Social Support and Status, and (7) Sociodemographic data, which included age, race, language, disability, neighborhood, sex, sexual orientation, and gender identity questions. We summarize pilot data on item and instrument completion rates, participant feedback, and survey revisions to address participant critiques. Result The response and completion rates were 66% and 95% respectively. Most often skipped items were: mother’s highest education level (17% skipped), number of years attending a segregated school for those who did attend (15% skipped), childhood zip‐code (14% skipped), transportation mode around one’s neighborhood (13% skipped), and current worldview compared to during childhood (12% skipped). Few participants (n = 5/135) reported dislike or discomfort with any questions, with 3 of the 5 citing that questions about childhood caused discomfort. Participants also critiqued questions about education for not capturing their individual schooling experiences. In response to feedback, we conducted follow‐up discussions with participants about their reactions to specific childhood questions and expanded questions to capture more educational pathways, including trade school experiences and apprenticeships. We also added answer choices to often‐skipped items with insufficient answer options. Conclusion Overall, most SSDoH items had high completion rates, and few questions were consistently skipped by participants. While investigators often worry about offending or upsetting research participants, those in our study wanted to help improve questions. Participants acknowledged that some questions elicited strong emotions, but in most cases were both willing to complete these questions and appreciative of the chance to share their experiences. Designing questions that capture a fuller range of educational pathways was a valuable contribution to data collection.

INTRODUCTION How do reactions to a brain scan result differ between Black and White adults? The answer may inform efforts to reduce disparities in Alzheimer's disease (AD) diagnosis and treatment. METHODS Self‐identified Black (n = 1055) and White (n = 1451) adults were randomized to a vignette of a fictional patient at a memory center who was told a brain scan result. Measures of stigma and diagnosis confidence were compared between‐groups. RESULTS Black participants reported more stigma than White participants on four of seven domains in reaction to the patient at a memory center visit. Black participants’ confidence in an AD diagnosis informed by a brain scan and other assessments was 72.2 points (95% confidence interval [CI] 70.4 to 73.5), which was lower than the respective rating for White participants [78.1 points (95%CI 77.0 to 79.3)]. DISCUSSION Equitable access to early AD diagnosis will require public outreach and education that address AD stigma associated with a memory center visit.

Objective In the United States (U.S.), educational experiences can be wide-ranging. We examine educational experiences in an Alzheimer’s disease (ad) research cohort to understand how the representation and distribution of these experiences may affect the generalizability of conclusions in ad research. Method An online survey was administered to cognitively unimpaired participants (n = 135) in the UPenn ad Research Center clinical cohort. Self-report questionnaires gather sociodemographic data, including age, race, disability, education, and schooling. We report comparisons to U.S. educational attainment and examine correlations between education variables and executive function as measured by trail making test (TMT) B and digit span backward. Results The sample of 135 older adults averaged 74 years old, had about 17 years of schooling, and were mostly women (61%). All had at least a high school degree. About 11% had a high school diploma, about 8% had an associate’s degree, 24% had a 4-year college degree, 33% had a master’s degree, and over 20% had professional degrees. The distribution of educational attainment is not representative of the U.S. older adult population. More education associates with higher performance on TMT-B and digit span (both p < 0.008), particularly among those with the highest attainment. Conclusion Our findings suggest older adults enrolled in ad research have more education than the U.S. older adult population and a range of experiences in their schooling. We discuss three ways that the underlying distribution of educational experiences may affect the generalizability of conclusions drawn from ad research cohorts.

Objective Discrimination can affect healthy brain aging and Alzheimer’s disease (ad) outcomes. To advance this area of research, we characterized experiences of discrimination in a cohort of older adults, contributing data to a national research sample. Method An electronic survey was completed by cognitively unimpaired participants (n = 135) in the UPenn ad Research Center clinical cohort. The Everyday Discrimination Scale (EDS) asks 10 questions about lifetime experiences with discrimination. Self-report questionnaires gathered sociodemographic data, including age, race, disability, sex, sexual orientation, and gender identity. Associations between EDS items and sociodemographic characteristics were examined. Results The sample of 135 older adults averaged 74 years old, had 17 years of schooling, and were mostly women (61%) and white (71%). Half (49%) reported having discriminatory experiences including receiving less respect (35%), lower quality service (35%), less courtesy (34%), and being treated as inferior (35%) or less smart (22%). The most common reasons for discrimination were race (29%), gender (22%), skin color (18%), age (17%), and ancestry (16%). Black participants comprised the majority who reported receiving lower service (68%), being treated as less smart (60%), and with less courtesy (56%). Conclusions Our findings suggest older adults enrolled in brain aging research experience many types of discrimination, which disproportionately affect Black individuals. Their experiences make a valuable contribution to ad science, helping researchers to study how discrimination may correspond to ad outcomes. They also highlight the importance of researchers being well-trained to be culturally informed when interacting with individuals who have been, and may continue to be, impacted by discrimination.