Jeanine Gill’s research while affiliated with University of Pennsylvania and other places

Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to identify sociocultural factors that predict who serves as a SP in ADAMS. SP-reported outcomes were compared between three types of participant-SP relationships: spousal, adult child, and other.Results: Spouses (35%) and adult children (39%) were similarly likely to serve as SPs. Factors predicting who served differed. In multivariable analyses, adult children rated participants less impaired than spouses on measures of memory, judgment, and organizational abilities ( p < .05). Conclusions: The participant-SP relationship has independent effects on the SP’s reports of the severity of cognitive impairments.

Alzheimer’s disease (AD) causes progressive disability and, ultimately, death. Currently no therapy can delay or slow cognitive and functional decline. This prognosis contributes to the general public’s negative reactions—discrimination, pity, and social distance—toward individuals with AD and their families. But what if, using AD biomarker tests, diagnosis was made earlier and treatment was available? Stigma of AD might change. This project aimed to discover how diagnosis and treatment of AD before the onset of cognitive impairment would change public stigma, and how these effects might differ in ethnoracial populations. Comparisons of 12 experimental conditions (i.e., 2 (biomarker test result) x 2 (treatment availability) x 3 (cognitive impairment: none, mild, moderate)) are conducted in two independent samples of self-identified White (N=800) and Black (N=800) Americans. Findings anticipate the translation of the preclinical AD construct into care and will inform public policies and interventions to mitigate public stigma of AD.

Objective The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a “preclinical” diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions. Methods A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). Results The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05). Conclusions The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.

Background: Missing data are a notable problem in Alzheimer's disease clinical trials. One cause of missing data is participant dropout. The Research Attitudes Questionnaire is a 7-item instrument that measures an individual's attitudes toward biomedical research, with higher scores indicating more favorable attitudes. The objective of this study was to describe the performance of the Research Attitudes Questionnaire over time and to examine whether Research Attitudes Questionnaire scores predict study dropout and other participant behaviors that affect trial integrity. Methods: The Research Attitudes Questionnaire was collected at baseline and weeks 26 and 52 from each member of 119 participant/study partner dyads enrolled in a Phase 2, randomized, double-blind, placebo-controlled mild-to-moderate Alzheimer's disease clinical trial. Within-subject longitudinal analyses examined change in Research Attitudes Questionnaire scores over time in each population. Logistic regression analyses that controlled for trial arm and clustering in trial sites were used to assess whether baseline Research Attitudes Questionnaire scores predicted trial completion, study medication compliance, and enrollment in optional substudies. Results: Participants and study partners endorsed statistically similar ratings on the Research Attitudes Questionnaire that were stable over time. Participants with baseline Research Attitudes Questionnaire scores above 28.5 were 4.7 (95% confidence interval = 1.01 to 21.95) times as likely to complete the trial compared to those with lower scores. Applying the same cutoff, baseline study partner Research Attitudes Questionnaire scores were similarly able to predict study completion (odds ratio = 4.2, 95% confidence interval = 1.71 to 10.32). Using a score cutoff of 27.5, higher participant Research Attitudes Questionnaire scores predicted study medication compliance (odds ratio = 5.85, 95% confidence interval = 1.34 to 25.54). No relationship was observed between Research Attitudes Questionnaire score and participation in optional substudies. Conclusion: This brief instrument that measures research attitudes may identify participants at risk for behaviors that cause missing data.

Many studies show that caregivers for those with Alzheimer’s Disease (AD) are disproportionately female, but few studies have investigated how public attitudes influence this gender disparity. We analyzed secondary data from an experimental study of public reactions to AD dementia. Analysis included 944 respondents who read a vignette about a man with mild stage dementia and completed a modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS), which assesses 7 domains of stigma. Multivariable ordered logistic regression compared men and women on FS-ADS ratings. Women were less likely than men to endorse stronger negative aesthetic attributions (OR=0.75) and negative feelings (OR=0.76) and more likely to endorse stronger feelings of pity (OR=1.33; all p<0.05). No other differences were observed in FS-ADS domains (all p>0.05). The findings offer insights into relationships between gender and AD stigma, which may influence who is willing to become a caregiver for persons with AD and related dementias.

How older adults protect their cognitive health, reduce their risk for cognitive decline, and manage cognitive changes vary for men and women. To advance what is known about these differences and to promote inclusion of sexual and gender minorities in research, we are developing an empirically-informed research framework for studying gender effects in aging and Alzheimer’s research. In this presentation, we describe the framework informing our approach and present results from analyses of gender effects in The Health and Retirement Study that examine gender differences in the associations observed between education and cognitive measures in older adults. Our findings show gender’s effects on education vary in direction and magnitude as gender norms changed over time. Although college education serves as a factor protective against cognitive decline, characteristics of who achieves a four-year college degree change over time. We discuss the implications of our results for aging and Alzheimer’s disease research.

Background Studies of persons with Alzheimer’s disease (AD) and related dementias typically require “study partners” (SPs) to report on the subject’s wellbeing and function. But little is known about how who a SP is might impact on these reports. Knowing this may help inform the interpretation of AD research. Methods We analyzed data from 730 older adults and their SPs enrolled in the Aging, Demographics and Memory Study (ADAMS). SPs provided data on their assessment of subjects’ functioning through the following: (1) the Blessed Dementia Rating Scale (BDRS), a multi‐domain informant measure of functional capacity; (2) three single‐item ratings of the subject’s “memory at the present time,” ability “in making judgments and decisions,” and ability to “organize his/her daily activities”; (3) instrumental/basic activities of daily living (IADL/BADL) scales. Subject cognition was assessed in an independent neuropsychological assessment using the mini‐mental status exam (MMSE), Trails A/B, Serial 7s, Boston Naming, and Animal Fluency. Bivariate and multivariable regression analyses were used to examine differences in SP reports based on their relationship to the subject. Demographics of SPs and subjects were also analyzed. Results Of SPs, 34.9% (n=255) were spouses, 38.4% (n=281) were adult children, and 26.6% (n=194) had a different relationship to the subject. In bivariate models, adult children were more likely to be college educated and provide care to the subject than spouses. In bivariate analyses, adult children rated subjects as more impaired on the BDRS and single‐item measures of memory, judgment and organizational abilities than did spouses(p<0.05). In multivariable analyses that controlled for differences in cognitive and functional performances, adult children, on average, rated subjects as less impaired on measures of memory, judgment, and organizational abilities than spouses(p<0.05). But, reporting varied in subgroups; in cognitively unimpaired subjects (MMSE>28), only 63.0% of child SPs reported a BDRS that indicated lack of impairment while 90.8% of spousal SPs did so (p<0.05). Conclusions Spouses and adult children are similarly likely to serve as SPs, but there are differences in how they report on subject functioning. Our findings have important implications for interpreting informant reports, particularly, of persons with no or mild cognitive impairment.

Background Studies of persons with Alzheimer’s disease (AD) and related dementias typically include “study partners” (SPs) who report on participants’ wellbeing and function. But little is known about what factors predict the type of person who steps into the role. Knowing this will inform barriers to recruitment into AD research. It may also offer a model to anticipate who will be a caregiver in early diagnosis and treatment of AD. Methods We analyzed data from the Health and Retirement Study’s (HRS) Aging, Demographics and Memory Study (ADAMS). ADAMS enrolled a subset of individuals in HRS and, for each of these subjects, a SP. HRS data were collected one year prior to the first ADAMS interview and provided a detailed family record of all living, legal and biologic, relatives and a spouse’s rating of their own health. ADAMS data provided who served as a SP reporting on subject instrumental and basic activities of daily living (IADL/BADL). Three distinct regression models examined how psychosocial factors predicted each of the three SP types: spouse, adult child, and other. Results Among subjects with spouses, multivariable analyses showed subject’s age and having a sister predicted that a spouse was less likely to serve as SP (both p<0.05). Among subjects with children, being a women, being older, having more children, more impairments in IADLS, and not having a spouse predicted that an adult child was more likely to serve as SP (all p<0.05). Having a spouse, more children, and having more years of education predicted that a non‐spousal and non‐child person was more likely to serve as SP while being a woman and having a daughter were associated with a lower probability that a non‐spouse and non‐child served as SP (all P<0.05). Conclusions Different factors predict the type of person who may serve as a SP. Our findings show patterns in interpersonal relatedness, educational attainment, and gender norms that may underlie differences in decisions about who serves as SP. This information may help inform recruitment and retention in AD research.