COVID-19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers.

INTRODUCTION: We aimed to characterize the COVID-19 pandemic's relationship with enrollment in US Alzheimer's Disease Research Centers (ADRCs). METHODS: Using data on 10,105 participants from 30 ADRCs, we conducted interrupted time series analyses to assess the relationship of the pandemic with enrollment and calculate projected dates of enrollment recovery. RESULTS: Participants enrolled during the pandemic (vs pre-pandemic) were more likely to have dementia and be referred by health professionals. The pandemic was associated with a 77% drop in enrollment, with projected trend recovery in March 2024 and 100% recovery in September 2024. COVID was associated with a 91% drop in Black/African American participants, compared to 71% in White participants. Enrollment of both Hispanic and female participants was declining 1.4% and 0.3%/month pre-pandemic. DISCUSSION: Funders and researchers should account for ongoing COVID-19 impact on ADRD research enrollment. Strategies to speed enrollment recovery are needed, especially for Black/African American and Hispanic groups. HIGHLIGHTS: Tested COVID pandemic association with enrollment at Alzheimer's Disease Research Centers. During versus pre-pandemic enrollees differed on demographic and clinical variables. Interrupted time series analyses: immediate 77% drop in enrollment related to COVID. Recovery projections: trend recovery in March 2024, 100% recovery in September 2024. Enrollment of African American and Hispanic participants should be prioritized.

"And Does That Necessarily Mean Absolutely Alzheimer's?" An Analysis of Questions Raised Following Amyloid PET Results Disclosure.

INTRODUCTION: Amyloid PET scans provide individuals with mild cognitive impairment (MCI) information about their risk of progressing to Alzheimer's dementia (AD). Given the wide-ranging implications of this information, best practice guidelines are needed to support researchers and clinicians disclosing these high-stakes test results. To inform the development of such guidelines, this analysis aims to describe questions and concerns raised during the disclosure of amyloid PET results in the context of MCI. METHODS: Qualitative description was performed to analyze (n = 34) transcripts of audio-recorded amyloid PET results disclosure sessions involving MCI care dyads. The analysis focused on characterizing the frequency and nature of questions raised during an open question-and-answer (Q&A) period following the return of scan results using a standardized protocol. RESULTS: Nearly all (n = 32/34) dyads posed questions during Q&A. Questions fell within six main categories with the most common being requests for clarification regarding AD/MCI, and next steps given the result. Questions were interspersed with comments reflecting the need for emotional support. Independently administered assessments of comprehension of results showed that, following the disclosure and Q&A, 31/32 participants with MCI and 31/31 care partners scored ≥4 on a 5-point scale. The number of questions asked by care partners during Q&A positively correlated with their level of comprehension (n = 31, Spearman's r = 0.370, p = 0.040). DISCUSSION: This analysis highlights the value of providing opportunities for patients and their family members to ask questions upon learning patients' brain amyloid status. Disclosing clinicians should be prepared to provide clarification, resources, and support to patients and families during the return of amyloid PET results.

Nurse-led pre-test counseling for Alzheimer's disease biomarker testing: Knowledge and skills required to meet the needs of patients and families.

INTRODUCTION: Biomarker testing for Alzheimer's disease and related disorders (ADRD) brings new opportunities for nurses to foster shared decision-making by leading pre-test counseling (PTC) for patients and families. METHODS: Audio-recordings of 18 nurse-led PTC sessions were analyzed to characterize questions posed by patient and family members dyads considering whether to pursue amyloid positron emission tomography. RESULTS: Sessions lasted 20 to 75 minutes and generated rich discussion of the purpose and potential implications of amyloid imaging. Dyads posed questions regarding: basic neuroanatomy; the spectrum of normal cognitive aging to dementia; clinical phenotypes and pathological hallmarks of ADRD; secondary prevention of ADRD; and advance planning. In response, PTC facilitators provided disease-specific education, clarification of overt misconceptions, caregiver support, and emotion de-escalation. CONCLUSION: Nurses conducting PTC for AD biomarker testing should be equipped to answer questions about topics both directly and indirectly related to testing, and also provide emotional support.

Do Individuals Aged 50 or Older View Cognitive Conditions Differently Than Physical Conditions? Evidence From a Pooled Analysis of Illness Perceptions in Type 2 Diabetes and Mild Cognitive Impairment.

Background and Objectives: Type 2 diabetes (T2DM) and mild cognitive impairment (MCI) are common late-life physical and cognitive health conditions. Illness perceptions, an individual's personal beliefs about the conditions, should be explored in the context of disease characteristics (physical or cognitive). This secondary analysis explored illness perceptions with a priori hypotheses about control (perceived controllability) and coherence (perceived understanding) dimensions among persons with T2DM and MCI, treating each as an exemplar of late-life physical and cognitive health conditions. We also explored whether age, education, and comorbid conditions moderate the relationships between T2DM or MCI condition groups and illness perceptions. Research Design and Methods: This cross-sectional, descriptive study examined baseline data collected from 146 T2DM to 90 MCI participants in 2 independent studies. The 9-item Brief Illness Perception Questionnaire was used to identify the similarities and differences in illness perceptions among persons with T2DM and MCI. We performed hierarchical linear regression controlling for identified covariates. Results: We found that T2DM and MCI participants had significantly different illness perceptions, including perceptions of personal control (b = -0.943, p = .009), treatment control (b = -1.619, p < .001), and coherence (b = -1.265, p = .001), after controlling for covariates. The results suggest that persons with MCI were likely to believe that their condition is less controllable (through their own strategies or medical treatment) and less understandable compared with their T2DM counterparts. Such associations remained statistically significant when the interactions were added to the models. Discussion and Implications: As T2DM and MCI are prevalent late-life conditions, health care professionals should consider individuals' subjective perceptions about their conditions in the context of disease characteristics when counseling secondary prevention strategies for disease management. Further research on illness perceptions in other conditions is needed to ensure the replicability of our findings.

Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.

BACKGROUND: Study partners are required for all participants at Alzheimer's Disease Research Centers (ADRCs). Study partners' attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies. OBJECTIVE: Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies. METHODS: Reasons for participation were analyzed with factor analysis and regression analysis. Effects of complaints and goal fulfillment on attendance were estimated with fractional logistic models. Open-ended responses were characterized with a Latent Dirichlet Allocation topic model. RESULTS: Study partners participated for personal benefit and altruism. They emphasized personal benefits more when their participants had a CDR > 0 than when they had a CDR = 0. This difference declined with participant age. The majority of study partners rated their ADRC participation as positive and meeting their goals. Although half reported at least one complaint, very few regretted participating. Those who reported that ADRC participation fulfilled their goals or had fewer complaints were more likely to have perfect attendance. Study partners requested more feedback about test results and better management of study visits. CONCLUSION: Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on their trust in researchers and the participant's cognitive status and age. Retention may improve with perceived goal fulfillment and fewer complaints. Potential areas for improving retention are providing more information about the participant's test results and better management of study visits.

Psychometric Evaluation of the Perceived Research Burden Assessment (PeRBA) in Longitudinal Studies of Alzheimer Disease Using Rasch Analysis.

INTRODUCTION: The Perceived Research Burden Assessment (PeRBA) was developed to measure participant perceptions of burden in research studies. This study aimed to examine the psychometric properties of this assessment using Rasch analysis in participants in the longitudinal studies of the Alzheimer disease (AD) and their family members. METHODS: PeRBA was administered to 443 participants in studies of AD and 212 family members across 4 Alzheimer Disease Research Centers. We used Rasch analysis to examine PeRBA's psychometric properties, and data-model fit both at item and scale levels. RESULTS: PeRBA demonstrated good reliability and item and person fit for participants and family members. A few items did not fit the model for participants or family members. Areas of content redundancy were found in items assessing similar amounts of perceived research burden. Areas of content gaps were also found, with no items assessing certain levels of perceived research burden. CONCLUSION: Analysis results support the good overall psychometric properties of PeRBA among research participants in studies of AD and their family members. Recommendations have been provided to improve the assessment, including rewording items and adding items that could account for a broader range of perceived research burden.

Mechanisms by Which Cultural-Centric Narrative Influences Interest in ADRD Research Among African American Adults.

BACKGROUND AND OBJECTIVES: Insufficient ethnoracial diversity is a pervasive challenge in Alzheimer's disease (AD) research. The Recruitment Innovations for Diversity Enhancement (RIDE) is grounded in the premise that culturally informed narratives of research participation can inspire individuals from a given culture-sharing group to consider research enrollment. This study examines factors associated with interest in AD research among Black or African American adults following exposure to RIDE narrative campaign materials. RESEARCH DESIGN AND METHODS: A community-based sample of 500 Black or African American adults viewed RIDE narrative materials online and completed a survey of perceptions about research, AD risk, and likelihood of enrolling in AD research. Logistic regression examined predictors and mediators of self-reported likelihood of participating in AD research. RESULTS: Most (72%) participants reported interest in being contacted for AD research opportunities. After controlling for key variables, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Perceived burden of AD research partially mediated the effects of prior research experience and trust on likelihood of enrollment. Perceived benefits of AD research also played a mediating role, accounting for over one third of the effect of trust on likelihood of enrollment. DISCUSSION AND IMPLICATIONS: This study advances the field's understanding of how narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences regarding the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.

The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All.

The brain changes of Alzheimer's disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one's biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information.

Perceptions of Research Burden and Retention Among Participants in ADRC Cohorts.

OBJECTIVES: Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias. DESIGN: Multicenter mixed methods. SETTING: In-person or phone. PARTICIPANTS: A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more, enrolled in longitudinal studies, and had a Clinical Dementia Rating Scale global score ≤1. MEASUREMENTS: Participants completed a 20-minute survey including the 21-item PeRBA about their research participation. RESULTS: PeRBA demonstrated high-internal consistency and convergent validity. PeRBA scores correlated with expected perceptual factors. Higher PeRBA scores were associated with lower attendance and higher dropout rates. CONCLUSIONS: PeRBA can be used by researchers to identify participants who may feel overburdened and tailor approaches and strategies to support participants in longitudinal AD studies, maximizing participation, and reducing dropout. Making efforts to increase participants' understanding of study procedures, and building and maintaining trust throughout the study, can contribute to reducing perceived burden and potentially increasing retention in longitudinal AD studies.

Retaining Participants in Longitudinal Studies of Alzheimer's Disease.

BACKGROUND: Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants. OBJECTIVE: We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research. METHODS: Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model. RESULTS: Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research. CONCLUSION: The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.

A Blood Test for Alzheimer's Disease: It's about Time or Not Ready for Prime Time?

A blood test for Alzheimer's disease is now available for clinical use in persons with cognitive impairment. This is an extraordinary milestone, though the amyloid-based PrecivityAD™ test is not without limitations. Pre and post-test counseling are essential. Phosphorylated tau blood tests are likely to follow soon. When used in conjunction with an appropriate clinical evaluation, blood tests provide the opportunity for an early, accurate, and accessible diagnosis of Alzheimer's disease. Standalone use, however, carries a significant risk of misinterpretation and is strongly discouraged. Now is the time to develop appropriate use criteria to guide the use of these promising assays.

Willingness to Participate in Clinical Research Among Individuals With Cognitive Impairment.

This secondary analysis examined (1) factors associated with willingness to participate in clinical research for cognitive health among individuals with cognitive impairment and their care partners, and (2) concordance regarding such willingness between individuals with cognitive impairment and their care partners (dyads). Neuropsychological factors and willingness to participate in clinical research were collected using self-reported questionnaires. Participants' sociodemographic and clinical information was extracted from the University of Pittsburgh Alzheimer's Disease Research Center record. Binary logistic regression and Cohen's kappa coefficient analyses were performed. Greater trust in medical researchers (p = 0.031, B = 0.127) and more severe cognitive impairment (p = 0.009, B = -0.289) were associated with willingness to participate in clinical research among individuals with cognitive impairment. Dyadic agreement on willingness to have the individual with cognitive impairment enroll in clinical research was poor to fair (κ = 0.380). Findings suggest that individuals with cognitive impairment with greater trust in health professionals are more likely to agree to clinical research participation. Nurses and other health care providers who counsel individuals with cognitive impairment and their care partners should work to build trusting relationships with participants and be mindful of how increased trust can alter power dynamics between participants and health care professionals. [Research in Gerontological Nursing, 15(2), 76-84.].

Do Perceptions of Cognitive Changes Matter in Self-Management Behaviors Among Persons With Mild Cognitive Impairment?

BACKGROUND AND OBJECTIVES: This secondary analysis examined (a) the association between illness perceptions (perceived understanding and cause of mild cognitive impairment [MCI]) and self-management behaviors for cognitive health, and (b) whether sociodemographic and clinical factors moderate such relationships among persons with MCI. RESEARCH DESIGN AND METHODS: We conducted a cross-sectional study of 85 participants using baseline data from the Return of Amyloid Imaging Scan Results Study. The coherence and causality subscales of the Revised Illness Perceptions Questionnaires were used. Self-management behaviors (dietary changes, physical activity, mental activities, dietary supplements) were assessed using the Risk Evaluation and Education for ALzheimer's disease health behavior measure. Sociodemographic and clinical information was extracted from patients' medical records. We performed hierarchical linear regression and binary logistic regression. RESULTS: We found no main effects for illness perceptions and self-management of cognitive health. Interaction effects were detected, including (a) coherence and age on the total number of self-management behaviors (b = 0.01, p = .04) and on physical activity (p = .04, odds ratio [OR] = 1.02, 95% confidence interval [CI] = 1.00-1.03), (b) causality and age on dietary supplements (p = .03, OR = 1.31, 95% CI = 1.02-1.67), and (c) causality and education on mental activities (p = .02, OR = 0.44, 95% CI = 0.22-0.88). DISCUSSION AND IMPLICATIONS: Findings suggest that age and education moderate the relationship between illness perceptions and self-management behaviors. Health care professionals should consider subjective perceptions about MCI in light of sociodemographic and clinical factors when discussing cognitive health self-management.

Association Between the APOEɛ2/ɛ4 Genotype and Alzheimer's Disease and Mild Cognitive Impairment Among African Americans.

We examined the association between APOEɛ2/ɛ4 with incident Alzheimer's disease (AD) and mild cognitive impairment (MCI) among African Americans using the national dataset from the National Alzheimer's Coordinating Center (NACC) from 2005 to September 2019. Compared to ɛ3/ɛ3 carriers, ɛ2/ɛ4 carriers exhibited a similar risk of incident AD (adjusted hazard ratio [aHR] = 0.85, 95% CI [0.39, 1.84]) among the AD cohort and similar risk of incident MCI (aHR = 0.88, 95% CI [0.51, 1.50]) among the MCI cohort. Our findings suggest that, unlike the increased risk of AD and MCI in non-Latino whites, APOEɛ2/ɛ4 genotype is not associated with the incidence of AD and MCI among African Americans.

Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals.

This article examines ethical issues associated with the return of AD neuroimaging results to cognitively symptomatic individuals. Following a review of research on patient and study partner reactions to learning the results of biomarker testing for AD, we examine ethical issues that will be of increasing significance as the field transitions to an era wherein disease-modifying treatments for AD become available. We first review the ethical justification for returning AD biomarker results to individuals who desire them. We then address a more novel question: whether, and to what extent, clinicians or clinical researchers should influence the decisions of individuals who are potentially reluctant to learn their AD imaging results. We argue that in many cases, it is ethically correct to explore, and sometimes alter, factors that may be inhibiting one's desire to know these test results. Our argument is grounded in the premise that having more complete information about changes that may be happening in one's brain will generally yield more informed participation in decisions about one's own care, thereby promoting autonomy. Finally, on the assumption that we have established that it is frequently ethically correct to try to communicate testing information, we examine considerations regarding (not whether but) how this is best accomplished, discussing the concept of responsible transparency. We suggest that both (1) explorations of why one may or may not want to learn results of AD biomarker imaging and (2) the responsible return of such test results is best accomplished using a transactional model of communication.

Illness Perceptions, Self-efficacy, and Self-reported Medication Adherence in Persons Aged 50 and Older With Type 2 Diabetes.

BACKGROUND: Illness perceptions, patients' beliefs about their health condition, may affect medication adherence as well as self-efficacy for managing the condition in type 2 diabetes (T2DM). OBJECTIVES: The aims of this study were to investigate the associations between illness perceptions, self-efficacy, and self-reported medication adherence among persons (≥50 years of age) with T2DM and explore whether the number of comorbid conditions moderates these associations. METHODS: This secondary analysis of cross-sectional data used baseline data from persons with T2DM. Self-administered questionnaires, including the Brief Illness Perception Questionnaire, Self-efficacy for Managing Chronic Disease, and the 4-item Morisky-Green-Levine Medication Adherence Scale, were used. We performed hierarchical multiple linear regression analyses. RESULTS: Participants (N = 146) were 57.5% female, 67.1% white, and on average 64 years old. Six dimensions of illness perceptions (ie, consequences, personal control, treatment control, identity, concerns, and emotional representations) were associated with self-efficacy for managing T2DM. Five dimensions (ie, timeline, personal control, treatment control, coherence, and emotional representations) were significant predictors of self-reported medication adherence. Whereas the number of comorbid conditions was significantly associated with self-efficacy for managing T2DM in all models (P values < .001), the number of comorbid conditions was not associated with self-reported medication adherence. CONCLUSIONS: This study suggests that illness perceptions and comorbid conditions may play a critical role in either self-efficacy or self-reported medication adherence in persons (≥50 years of age) with T2DM. Future research should incorporate an individual's illness perceptions and comorbid conditions into the development of interventions that may improve both self-efficacy and medication adherence in T2DM.

Perspective on the "African American participation in Alzheimer disease research: Effective strategies" workshop, 2018.

The Washington University School of Medicine Knight Alzheimer Disease Research Center's "African American Participation in Alzheimer Disease Research: Effective Strategies" Workshop convened to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in non-white individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.

Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders.

INTRODUCTION: African American/Black adults are severely underrepresented in basic, clinical, and behavioral research studies in Alzheimer's disease and related disorders (ADRD). Innovative, evidence-based, and culturally salient strategies can maximize the recruitment of African American/Black adults into ADRD research. METHODS: We conducted and analyzed semi-structured interviews to capture the research participation stories of African American/Black participants and study partners from the University of Pittsburgh's Alzheimer's Disease Research Center. The themes and messaging principles generated through this process informed the development of video- and text-based materials that were evaluated for community member acceptance using focus groups. RESULTS: Focus group individuals (N = 36) generally favorably rated the video and text materials, characterizing them as "interesting," "realistic," and "convincing." DISCUSSION: Capturing the narratives of African American/Black research participants is a critical component to developing culturally relevant materials for broader dissemination and is essential to advancing beyond information-only recruitment approaches, which tend to rely disproportionately on negative messages.

A randomized controlled trial of amyloid positron emission tomography results disclosure in mild cognitive impairment.

INTRODUCTION: Recent studies suggest that Alzheimer's disease (AD) biomarker disclosure has no discernable psychological impact on cognitively healthy persons. Far less is known about how such results affect symptomatic individuals and their caregivers. METHODS: Randomized controlled trial of 82 mild cognitive impairment (MCI) patient and caregiver dyads (total n = 164) to determine the effect of receiving amyloid positron emission tomography results on understanding of, and perceived efficacy to cope with, MCI over 52 weeks of follow-up. RESULTS: Gains in the primary outcomes were not consistently observed. Amyloid negative patients reported greater perceived ambiguity regarding MCI at follow-up, while moderate and sustained emotional distress was observed in patients, and to a lesser extent, caregivers, of those who were amyloid positive. There was no corresponding increase in depressive symptoms. DISCUSSION: These findings point to the possibility that both MCI patients and caregivers may need emotional support after the disclosure of amyloid scan results.