Carolyn Kuz’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.

Background Beginning new Alzheimer’s disease (AD) treatments before AD symptoms are prominent would optimize the benefits of these disease slowing treatments. To accomplish this goal, clinicians must identify measures of early disease progression. As a step in doing this, we set out to characterize the relationships between cognitive complaints, wellbeing, cognitive performance, and metacognitive calibration in older adults in order to inform a model of cognition in typical older adults. Method Sample of 344 adults aged 65+ completed an online task. Cognitive complaints were assessed with 7 domains on the Memory Function Questionnaire (MFQ). Wellbeing was measured with ratings of overall wellbeing, health, satisfaction with daily life, anxiety, depression, and Future Time Perspective (FTP) scale. Cognitive performance was captured through reaction times and accuracy on Forward and Backward Digit Span (DS) tasks and accuracy on a Dot Matrix Task (DMT). Participants provided confidence ratings before and after the DMT. Metacognitive calibration (MCC) was operationalized as the difference between trial accuracy reaction time and global post‐DMT confidence ratings. Results reported are statistically significant at P<0.05 unless otherwise stated. Results Fewer cognitive complains, as indicated by higher reports on all 7 MFQ domains, were associated with better health, wellbeing, and satisfaction with daily life. Most domains (6 of 7) were associated with more expansive FTP, higher anxiety (5 of 7), lower depressive symptoms (7 of 7), higher post‐task confidence (4 of 7), and better MCC (4 of 7). For 89% of participants, confidence ratings either decreased or remained unchanged from before to after the DMT; in the full multivariable model, the group that had confidence increase after the DMT showed lower accuracy (logit = ‐3.71, 95%CI ‐5.80, ‐1.61). In the full multivariable model, the group with low MCC (more confident than quick) demonstrated worse DMT accuracy (logit = ‐1.91, 95%CI ‐3.37, ‐0.45) and worse backward DS performance (logit = 0.25, 95%CI ‐0.04, 0.54, p = 0.09) compared to the typical MCC group (confidence∼reaction time). Conclusion Cognitive complaints, wellbeing, cognitive performance, post‐task appraisals of confidence in task accuracy, and the consistency between perceptions and performance (metacognition) are useful constructs for informing a model of subjective cognition in typical older adults.