Racial and ethnic differences in plasma biomarker eligibility for a preclinical Alzheimer's disease trial.

INTRODUCTION: In trials of amyloid-lowering drugs for Alzheimer's disease (AD), differential eligibility may contribute to under-inclusion of racial and ethnic underrepresented groups. We examined plasma amyloid beta 42/40 and positron emission tomography (PET) amyloid eligibility for the ongoing AHEAD Study preclinical AD program (NCT04468659). METHODS: Univariate logistic regression models were used to examine group differences in plasma and PET amyloid screening eligibility. RESULTS: Of 4905 participants screened at time of analysis, 1724 were plasma eligible to continue in screening: 13.3% Hispanic Black, 24.7% Hispanic White, 20.8% non-Hispanic (NH) Asian, 24.7% NH Black, and 38.9% NH White. Plasma eligibility differed across groups in models controlling for covariates (odds ratio from 1.9 to 4.0 compared to the NH White reference group, P < 0.001). Among plasma eligible participants, PET eligibility did not differ by group. DISCUSSION: These results suggest that prevalence of brain amyloid pathology differed, but that eligibility based on plasma was equally effective across racial and ethnic group members. HIGHLIGHTS: Plasma amyloid eligibility is lower in underrepresented racial and ethnic groups. In plasma eligible adults, positron emission tomography eligibility rates are similar across race and ethnicity. Plasma biomarker tests may be similarly effective across racial and ethnic groups.

Promoting diverse perspectives: Addressing health disparities related to Alzheimer's and all dementias.

Dementia research lacks appropriate representation of diverse groups who often face substantial adversity and greater risk of dementia. Current research participants are primarily well-resourced, non-Hispanic White, cisgender adults who live close to academic medical centers where much of the research is based. Consequently, the field faces a knowledge gap about Alzheimer's-related risk factors in those other groups. The Alzheimer's Association hosted a virtual conference on June 14-16, 2021, supported in part by the National Institute on Aging (R13 AG072859-01), focused on health disparities. The conference was held entirely online and consisted of 2 days of core programming and a day of focused meetings centered on American Indian and Alaska Natives and on LGBTQIA+ populations. Over 1300 registrants attended discussions focused on the structural and systemic inequities experienced across diverse groups, as well as ways to investigate and address these inequities.

Childhood socioeconomic status interacts with cognitive function to impact scam susceptibility among community-dwelling older adults.

OBJECTIVES: We examined whether childhood socioeconomic status (SES) is related to scam susceptibility in old age and tested the hypothesis that childhood SES interacts with cognitive function to impact scam susceptibility. METHODS: This study employed a cross-sectional design. All data were collected in participants' community-based residences. Participants were 1071 older adults (mean age = 81.05 years, SD = 7.53) without dementia (median MMSE score = 28.29, IQR = 27.86-30.00). Participants completed assessments of childhood SES, cognitive function, and scam susceptibility. We used linear regression models to examine the associations of childhood SES and cognitive function with scam susceptibility. RESULTS: In a regression model adjusted for age, gender, and education, poorer cognitive function was associated with higher scam susceptibility, but childhood SES was not. However, in an additional model that included the interaction of childhood SES and cognitive function, the interaction was significant, such that lower childhood SES was associated with higher scam susceptibility among participants with lower cognitive function. CONCLUSION: Lower childhood SES is associated with higher scam susceptibility among older adults with lower levels of cognitive function. Thus, older adults who experienced limited resources in childhood and have lower cognitive function may represent a specific group for interventions to increase scam awareness and prevent financial exploitation.

Daily Written Care Summaries for Families of Critically Ill Patients: A Randomized Controlled Trial.

OBJECTIVES: To determine the effect of daily written updates on the satisfaction and psychologic symptoms of families of ICU patients. DESIGN: Randomized controlled trial. SETTING: Single, urban academic medical center. SUBJECTS: Surrogates of nondecisional, critically ill adults with high risk of mortality ( n = 252) enrolled from June 2019 to January 2021. INTERVENTIONS: Usual communication with the medical team with or without written communication detailing the suspected cause and management approach of each ICU problem, updated each day. MEASUREMENTS AND MAIN RESULTS: Participants completed surveys at three time points during the ICU stay: enrollment ( n = 252), 1 week ( n = 229), and 2 weeks ( n = 109) after enrollment. Satisfaction with care was measured using the Critical Care Family Needs Inventory (CCFNI). The presence of anxiety, depression, and acute stress were assessed using the Hospital Anxiety and Depression Scale (HADS) and Impact of Events Scale Revised (IES-R). CCFNI, HADS, and IES-R scores were similar among participants assigned to the intervention group and control group upon enrollment and during the first week after enrollment ( p > 0.05). From enrollment to the second week after enrollment, there was an improvement in CCFNI and HADS scores among participants assigned to the intervention group versus the control group. At week 2, CCFNI scores were significantly lower among participants in the intervention group versus the control group, indicating greater satisfaction with care: 15.1 (95% CI, 14.2-16.0) versus 16.4, (95% CI, 15.5-17.3); p = 0.04. In addition, 2 weeks after enrollment, the odds of symptoms of anxiety, depression, and acute stress among participants assigned to the intervention versus control group were 0.16 (95% CI, 0.03-0.82; p = 0.03); 0.15 (95% CI, 0.01-1.87; p = 0.14); and 0.27 (95% CI, 0.06-1.27; p = 0.10), respectively. CONCLUSIONS: Written communication improved satisfaction and the emotional well-being of families of critically ill patients, supporting its use as a supplement to traditional communication approaches.

The Association of Late Life Cognitive Activity with Healthcare and Financial Decision-Making in Community-Dwelling, Nondemented Older Adults.

OBJECTIVE: The purpose of this study was to test the hypothesis that late life cognitive activity is associated with decision-making in older adults and to examine whether this association varies by level of cognitive function. DESIGN: This study employed a cross-sectional design. SETTING: All data were collected in participants' community-based residences. PARTICIPANTS: Participants were 1,084 older adults (mean age = 81.05 years, standard deviation = 7.53) without dementia (median Mini-Mental State Examination score = 29, interquartile range = 27.86-30.00). MEASUREMENTS: Participants completed assessments of late life cognitive activity, cognitive function, and decision-making. We used linear regression models to examine the associations of late life cognitive activity and cognitive function with decision-making. RESULTS: In a regression model adjusted for age, gender, and education, more frequent late life cognitive activity was associated with better decision-making, as was higher cognitive function. Furthermore, in an additional model that included the interaction of late life cognitive activity and cognitive function, the interaction was significant, such that late life cognitive activity was most strongly associated with decision-making among participants with lower levels of cognitive function. CONCLUSION: Frequent engagement in late life cognitive activity may help maintain decision-making among older persons, particularly among those with lower levels of cognitive function.

"My Parent's Body Is Sacred": Perspectives From Adult Latino Children About Brain Donation for Alzheimer Disease Research.

INTRODUCTION: Brain donation is a critical part of advancing research addressing Alzheimer disease and related dementias (ADRD). Studies on ADRD with an option for brain donation are reliant on family members to fulfill the research participant's plan for brain donation. Thus, family members play a pivotal role in increasing brain donation rates, particularly among under-represented groups. METHODS: This study examines knowledge, attitudes, and beliefs about brain donation for research among Latinos. Latino men (N=4) and Latina women (N=11) 18 years of age or older with a parental figure age 65 years and over were invited to participate in a focus group. RESULTS: Data analyses revealed 3 themes. Two themes focused on factors influencing a family's willingness to support brain donation: (a) social and cultural contexts, and (b) lack of knowledge and information about the brain donation process. The last theme provided recommendations for engaging older Latino adults in ADRD research and brain donation. DISCUSSION: Results suggest being inclusive of family members during all stages of the research process, from recruitment to dissemination. In addition, addressing information gaps among Latinos about the process and benefits of brain donation may help mitigate mistrust and misperceptions and increase participation rates in brain donation.

Leveraging virtual reality to train certified nursing assistants as essential dementia-care personnel in the age of COVID-19.

BACKGROUND: COVID-19 has placed an extraordinary and disproportionate level of responsibility and risk on certified nursing assistants (CNAs) caring for persons with dementia (PWD) relative to their training, resources, and compensation levels. Nearly one-quarter of COVID-19 deaths in the United States have been nursing home residents and staff. Despite providing the majority of direct care, CNAs are amongst the most under-resourced and under-trained frontline workers. Given their essentiality, it is critical to support CNAs during the COVID-19 pandemic. The purpose of this work is to provide CNAs with a space to strengthen their knowledge and confidence in caring for PWD. This pilot study applies a virtual reality (VR) curriculum to train CNAs regarding the lived experiences of PWD and their loved ones. The VR vignette portrays a Latinx woman, Beatriz, through progressive stages of Alzheimer's disease. METHOD: Chicago Methodist Senior Services (CMSS) CNAs were recruited (N=7; 86% female, 86% Black) for a seven-week online training program consisting of 1.5 hours per week. Each class included a didactic lecture and an Embodied Labs VR module depicting a first-person experience of dementia through a distributive model approach. The program concluded with two recorded focus groups. Participants completed the UCLA Geriatric Attitudes Scale, a dementia knowledge assessment, the Interpersonal Reactivity Index surveys, and a COVID-19 Impact questionnaire. Current analyses include qualitative content analysis for focus group data and descriptive, quantitative statistics for pre-and post-VR intervention surveys. RESULT: Preliminary results demonstrate that CNAs endorsed a positive change in attitudes toward older adults (p=0.069), a deepened understanding of dementia, and increased confidence in caregiving skills. Focus groups allowed CNAs to discuss changes in resident behavior and support one another through a virtual platform during a global pandemic. CONCLUSION: Combining traditional didactic lectures with VR-based curricula provided CNAs with foundational knowledge and first-hand experience of dementia pathology. Participants reported greater levels of insight and empathy for PWD. Future aims include expansion of training content to include end-of-life conversations, LGBTQIA aging, and Lewy body dementia.

Representation of Older Latinxs in Cohort Studies at the Rush Alzheimer's Disease Center.

The Rush Alzheimer's Disease Center (RADC) conducts 5 harmonized prospective clinical-pathologic cohort studies of aging - with 1 study, the Latino Core, focused exclusively on Latinxs, 2 studies consisting of mostly non-Latinx whites, and 2 studies of mostly non-Latinx blacks. This paper contextualizes the Latino Core within the other 4 harmonized RADC cohort studies. The overall aim of the paper is to provide information from the RADC, so that researchers can learn from our participants and procedures to better advance the science of Alzheimer's disease and related dementias in Latinxs. We describe an annual clinical evaluation that assesses risk factors for Alzheimer's dementia among older adults without known dementia at enrollment. As all RADC cohort studies offer brain donation as a part of research participation, we discuss our approach to brain donation and subsequent participant decision-making among older Latinxs. We also summarize baseline characteristics of older Latinxs across the 5 RADC cohort studies in relation to the baseline characteristics of non-Latinx blacks and non-Latinx whites. Finally, we outline challenges and considerations as well as potential next steps in cognitive aging research with older Latinxs.

The Health Equity Through Aging Research And Discussion (HEARD) Study: A Proposed Two-Phase Sequential Mixed-Methods Research Design To Understand Barriers And Facilitators Of Brain Donation Among Diverse Older Adults.

Brain donation in studies on aging remains a critical pathway to discovering and improving preventive measures and treatments for Alzheimer's dementia and related disorders. Brain donation for research is almost exclusively obtained from non-Latinx Whites of higher socioeconomic status in the United States. Despite persistent efforts, it has been difficult to obtain consent for brain donation among diverse participants. Hence, our understanding of Alzheimer's dementia and related disorders remains incomplete. The purpose of this methodological paper was to propose and outline a two-phase sequential mixed-methods research study design to identify barriers and facilitators of brain donation among diverse older adults. The first phase will consist of qualitative focus groups using a three (participant minority status: African American, Latinx, or White of lower income) by two (participant brain donation decision: consented or declined) design. The second phase will include statistical analyses of quantitative measures of existing data representing categories of variables that may be associated with decision making regarding brain donation. Next steps must include conducting qualitative focus groups and subsequent data analyses, resulting in overarching themes. Afterward, qualitative themes will be operationalized using quantitative variables for statistical analyses. This proposed study design can provide the foundation for developing and implementing effective and culturally competent survey instruments, educational tools, and intervention strategies in an effort to facilitate brain donation among diverse older adults.

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.

Perceptions of Risk Factors for Alzheimer Disease Among Community-Dwelling, Nondemented Older African Americans.

PURPOSE: Heightened Alzheimer disease (AD) risk among African Americans represents a racial disparity in aging. This study examines perceptions of AD risk factors among nondemented older African Americans. METHODS: Participants indicated how important nine factors were in increasing one's AD risk using a Likert-type scale with endpoints 1=not at all important to 4=extremely important. We examined perceptions of AD risk factors as a function of age, education, gender, and global cognition using separate logistic regression models. PATIENTS: Participants were from The Minority Aging Research Study (N=610) with a mean age of 74.5 years, a mean education of 14.9 years, and 24% were men. RESULTS: Of the AD risk factors, predictors were significantly related to genetics and God's Will. Younger participants (est.=-0.06, P=0.02) and those with more education (est.=0.14, P=0.02) were more likely to report genetics as extremely important. Participants with more education were less likely to indicate God's Will as extremely important (est.=-0.14, P<0.0005). CONCLUSIONS: Among older African Americans, age and education were important characteristics for the perception of AD risk factors. Findings can facilitate designing effective, culturally competent educational tools for meaningful engagement with older African Americans about AD.

Parental Perception of the Factors that Affect Diabetes Management in Youth.

IN BRIEF Diabetes management is challenging for youth. We developed a theoretical framework for the facilitators and barriers to diabetes management in youth from the perspective of parents.

Medicaid beneficiaries who continue to use the ED: a focus on the Illinois Medical Home Network.

OBJECTIVES: Frequent, nonurgent emergency department use continues to plague the American health care system through ineffective disease management and unnecessary costs. In 2012, the Illinois Medical Home Network (MHN) was implemented to, in part, reduce an overreliance on already stressed emergency departments through better care coordination and access to primary care. The purpose of this study is to characterize MHN patients and compare them with non-MHN patients for a preliminary understanding of MHN patients who visit the emergency department. Variables of interest include (1) frequency of emergency department use during the previous 12 months, (2) demographic characteristics, (3) acuity, (4) disposition, and (5) comorbidities. METHODS: We performed a retrospective data analysis of all emergency department visits at a large, urban academic medical center in 2013. Binary logistic regression analyses and analysis of variance were used to analyze data. RESULTS: Medical Home Network patients visited the emergency department more often than did non-MHN patients. Medical Home Network patients were more likely to be African American, Hispanic/Latino, female, and minors when compared with non-MHN patients. Greater proportions of MHN patients visiting the emergency department had asthma diagnoses. Medical Home Network patients possessed higher acuity but were more likely to be discharged from the emergency department compared with non-MHN patients. CONCLUSIONS: This research may assist with developing and evaluating intervention strategies targeting the reduction of health disparities through decreased use of emergency department services in these traditionally underserved populations.

Health and Financial Literacy and the Acquisition of COVID-19 Knowledge in Older Adults.

Knowledge about COVID-19 enters into many aspects of decision making, especially for older people who are at increased risk of severe disease or death. Yet little is known about the resources that supported older people's uptake of COVID-19 knowledge. Here, we hypothesized that higher pre-pandemic health and financial literacy was associated with higher COVID-19 knowledge. Participants were 434 community-based older people without dementia. COVID-19 knowledge was assessed via a 5-item measure, and health and financial literacy was assessed via a 32-item measure. In an ordinal regression model adjusted for age, gender, and education, higher literacy was associated with higher COVID-19 knowledge (p < .0001), and this association persisted after further adjusting for robust measures of global cognition or one of five specific cognitive domains (all p's ≤ .0001). These findings suggest that literacy plays a key role in supporting older people's acquisition of impactful knowledge in the real world.

Written communication and the ICU team experience (WRITE): A pre-post intervention study.

OBJECTIVE: Families of critically ill patients may benefit from receiving a written update of patient care each day. Our objective was to develop a system to facilitate care provider creation of written updates and to determine the effect of implementing this process on the care provider experience. DESIGN: The experiences of ICU care providers (nurses, advanced practice providers, and physicians) were measured monthly during a 3-month pre-intervention and a 3-month intervention period. During the intervention period, written updates were sent to families each day and posted in the electronic medical record. Study investigators assisted by editing and distributing the written communication to families. SETTING: An urban academic medical center in the United States. MAIN OUTCOME MEASURES: Nurse-Physician Collaboration Scale (NPCS) and Maslach Burnout Inventory (MBI). RESULTS: Over the 3-month intervention period, care providers created written communication for families of 152 patients (average 5 ICU days per family). NPCS scores among the 65 participating care providers were significantly lower, indicating greater collaboration during the intervention vs. pre-intervention period: 49.9 (95 % CI 46.4-53.6) vs. 55.4 (95 % CI 51.5-59.3), p = 0.002. MBI scores were similar during the intervention vs. pre-intervention periods. A subset of care providers participated in individual interviews. Care providers reported that the process of creating written communication was acceptable and had clear benefits for both families and the medical team. CONCLUSIONS: Use of written communication as a supplement to verbal communication improves collaboration among ICU care providers without affecting symptoms of burnout. IMPLICATIONS FOR PRACTICE: We created a system to facilitate written communication with ICU families that was acceptable to care providers and improved aspects of their experience. In the future, use of written communication can be enhanced with refinements to the process that reduce the time spent creating written updates while highlighting the benefits to families and care providers.

Financial Risk Aversion Among Older Black and White Adults.

OBJECTIVES: Risk aversion has a substantial impact on decision making and is associated with key demographic characteristics. However, few studies have investigated whether risk aversion varies by race. METHODS: We investigated racial differences in financial risk aversion in 684 older Black and White adults without dementia in the Minority Aging Research Study and Rush Memory and Aging Project matched for age, education, sex, and cognition using Mahalanobis distance. We also investigated whether select contextual factors (self-reported discrimination, socioeconomic status, and literacy) mediated or affective factors (trust, loneliness, and neuroticism) moderated any observed racial differences. RESULTS: In regression models adjusted for age, education, sex, and cognitive function, older Black adults were more risk averse than older White adults (Beta = 0.1264, standard error = 0.0227, p value ≤ .00001). None of the contextual or affective factors mediated or moderated this association. DISCUSSION: Older Black adults are more financially risk averse than older White adults. Because risk aversion may be associated with important financial and health outcomes in older age, more research is needed to investigate the reasons for this difference.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

Background: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a six-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. Methods: To test the efficacy of LST, we will conduct a two-arm single-site randomised controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomisation, a post-intervention survey, and a three- and six-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. Discussion: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care.

Competencies of more and less successful employment specialists.

The competencies of individual employment specialists influence rates of competitive employment among consumers and programs. Identifying competencies can lead to the development of more effective specialists and improve employment outcomes for consumers enrolled in employment services in community mental health care settings. The purpose of this study was to examine how more successful employment specialists performed supported employment duties in comparison to less successful employment specialists. Ethnographic researchers observed more and less successful employment specialists performing job duties related to the five phases of supported employment. Using grounded theory, they identified factors that differentiated the two groups. More successful employment specialists worked efficiently, developed egalitarian relationships with consumers, and collaborated well with other partners. Less successful employment specialists understood the model but lacked these behavioral skills. Service providers should screen and train employment specialists for efficiency, flexibility, and interpersonal skills.

Barriers to exercise among people with severe mental illnesses.

OBJECTIVE: Lack of exercise is a risk factor for various negative health outcomes. Some research suggests people with severe mental illnesses are less likely to engage in exercise than the general population. The purpose of this report is to document, analyze, and understand self-identified barriers to exercise that may be especially specific to people living with serious mental illnesses. Producing such knowledge can assist in the development of effective interventions. METHODS: Thirty-one people with serious mental illnesses participated in in-depth one-on-one interviews to discuss health behaviors in general and exercise more specifically. The authors then engaged in thematic analysis of data to identify common barriers to exercise. RESULTS: Participants reported psychiatric medication side effects, symptoms related to SMI, and physical comorbidities as barriers. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Clinicians should incorporate physical health goals as a part of treatment planning. Agencies also can play a role in increasing exercise through the implementation of programs.