Cognitive Complaint Types Can Correlate With Cognitive Testing, Perceived Stress, and Symptom Distress in Older Adults With Normal Cognition and Dementia.

OBJECTIVE: We examined how cognitive complaint types (CCTs) correlate with cognitive testing, perceived stress, and symptom distress in older adults with normal cognition and dementia. METHODS: Older adults (n = 259) with normal cognition, mild cognitive impairment, or mild-stage Alzheimer disease completed cognitive testing and self-report measures (Cognitive Difficulties Scale, Global Distress Index, Perceived Stress Scale). Cross-sectional analyses examined: (1) CCT composition by classification method,( 2) CCTs by diagnostic group, (3) correlations of CCTs with cognitive testing scores, and (4) correlations of CCTs with perceived stress and symptom distress. RESULTS: CCTs derived from 2 classification approaches loaded onto 4 factors: memory, attention-concentration (AC), temporal orientation, and praxis. Memory contained complaints about both memory and executive functioning. AC contained both classifications of AC complaints. Complaints about AC (AC1 and AC2) differed by diagnostic group (all P < 0.05). One of 2 classifications of AC (AC1) complaints discerned between impaired and unimpaired long-delay memory scores (both P < 0.05). In multivariable analyses, that same classification of AC (AC1) complaints correlated with higher perceived stress (both P < 0.001) but not symptom distress (both P > 0.05). CONCLUSION: CCTs showed a factor structure that was mostly robust between classification methods; however, some content-divergent CCTs shared factors, suggesting construct overlap. Relatively slight variations in content altered how CCTs correlated with diagnostic groups, perceived stress, and symptom distress. Most CCTs did not discern between impaired and unimpaired cognitive test scores. Research is needed to better understand CCTs as clinical markers and targets of clinical interventions.

How reactions to a brain scan result differ for adults based on self-identified Black and White race.

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.

Awareness of diagnosis predicts changes in quality of life in individuals with mild cognitive impairment and mild stage dementia.

BACKGROUND AND OBJECTIVE: This observational study examined how awareness of diagnosis predicted changes in cognition and quality of life (QOL) 1 year later in older adults with normal cognition and dementia diagnoses. RESEARCH DESIGN AND METHODS: Older adults (n = 259) with normal cognition, mild cognitive impairment (MCI), or mild stage Alzheimer's disease (AD) completed measures of diagnostic awareness, cognition, and multiple domains of QOL. We compared 1-year change in cognition and QOL by diagnostic group and diagnostic awareness. RESULTS: Patients who were unaware of their diagnosis at baseline showed average decreases in both satisfaction with daily life (QOL-AD; paired mean difference (PMD) = -0.9, p < 0.05) and physical functioning (SF-12 PCS; PMD = -2.5, p < 0.05). In contrast, patients aware of their diagnosis at baseline showed no statistically discernable changes in most QOL domains (all p > 0.05). Of patients aware of their diagnosis at baseline (n = 111), those who were still aware (n = 84) showed a decrease in mental functioning at follow up (n = 27; SF-12 MCS). Change in MoCA scores in patients unaware of their diagnosis was similar to that in patients aware of their diagnosis, -1.4 points (95% CI -2.6 to -0.6) and -1.7 points (95% CI -2.4 to -1.1) respectively. DISCUSSION AND IMPLICATIONS: Awareness of one's diagnosis of MCI or AD, not the severity of cognitive impairment, may predict changes in patients' mental functioning, expectations of their memory, satisfaction with daily life, and physical functioning. The findings may help clinicians anticipate the types of threats to wellbeing that a patient might encounter and identify key domains for monitoring.

The structural and social determinants of Alzheimer's disease related dementias.

INTRODUCTION: The projected growth of Alzheimer's disease (AD) and AD-related dementia (ADRD) cases by midcentury has expanded the research field and impelled new lines of inquiry into structural and social determinants of health (S/SDOH) as fundamental drivers of disparities in AD/ADRD. METHODS: In this review, we employ Bronfenbrenner's ecological systems theory as a framework to posit how S/SDOH impact AD/ADRD risk and outcomes. RESULTS: Bronfenbrenner defined the "macrosystem" as the realm of power (structural) systems that drive S/SDOH and that are the root cause of health disparities. These root causes have been discussed little to date in relation to AD/ADRD, and thus, macrosystem influences, such as racism, classism, sexism, and homophobia, are the emphasis in this paper. DISCUSSION: Under Bronfenbrenner's macrosystem framework, we highlight key quantitative and qualitative studies linking S/SDOH with AD/ADRD, identify scientific gaps in the literature, and propose guidance for future research. HIGHLIGHTS: Ecological systems theory links structural/social determinants to AD/ADRD. Structural/social determinants accrue and interact over the life course to impact AD/ADRD. Macrosystem is made up of societal norms, beliefs, values, and practices (e.g., laws). Most macro-level determinants have been understudied in the AD/ADRD literature.

Time out weekly smile: A pilot test of a virtual respite program.

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multi-method pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Development of a Comprehensive Battery to Collect Social and Structural Determinants of Health (SSDOH) in Cognitively Normal or Very Mildly Impaired Persons.

INTRODUCTION: Research addressing Alzheimer disease and related dementias must examine nonbiological factors influencing the risk for and expression of Alzheimer disease and related dementias. These factors address the interplay of cognition with lived experiences and social and structural determinants of health (SSDOH). However, coordinated measures of SSDOH are limited. METHODS: The Knight Alzheimer Disease Research Center (ADRC) at Washington University in St. Louis developed and piloted a comprehensive battery to measure SSDOH. One hundred and twelve participants, very mildly cognitively impaired or unimpaired, enrolled in memory studies completed the electronic SSDOH battery. The Clinical Dementia Rating (CDR) determined the presence or absence of cognitive impairment. RESULTS: Four domains demonstrated above acceptable intraclass correlation scores for test-retest reliability (≥0.70), including adverse childhood events, discrimination, social status, and early education. Twenty very mildly impaired participants completed the electronic pilot study. CONCLUSION: Our findings indicate that participants with early-stage symptomatic Alzheimer disease are able to participate in electronic SSDOH data collection. In collaboration with the University of Pennsylvania ADRC, we replaced/modified certain assessments to increase intraclass correlation. The resulting battery, Social and Structural Life-courses Influencing Aging and Dementia (SS-DIAD), can serve as a SSDOH collection tool and is currently utilized in cognitively impaired and unimpaired research participants at both ADRCs.

What is paradoxical lucidity? The answer begins with its definition.

Paradoxical lucidity in dementia is a clinically significant but understudied phenomenon. A provisional definition was proposed by the 2018 National Institute on Aging expert workshop and published in Alzheimer's and Dementia. However, several conceptual features of this definition remain vague, creating barriers to robust clinical research. Here, we critically analyze the provisional definition and present a refined definition that can be applied in clinical research. The refined definition is based on an analytic process our research group recently undertook to operationalize paradoxical lucidity for our own study protocol. Our goal is to facilitate debate and potentially harmonize interpretations of paradoxical lucidity among research groups.

Consideration of sex and gender in Alzheimer's disease and related disorders from a global perspective.

Sex or gender differences in the risk of Alzheimer's disease and related dementias (ADRD) differ by world region, suggesting that there are potentially modifiable risk factors for intervention. However, few epidemiological or clinical ADRD studies examine sex differences; even fewer evaluate gender in the context of ADRD risk. The goals of this perspective are to: (1) provide definitions of gender, biologic sex, and sexual orientation. and the limitations of examining these as binary variables; (2) provide an overview of what is known with regard to sex and gender differences in the risk, prevention, and diagnosis of ADRD; and (3) discuss these sex and gender differences from a global, worldwide perspective. Identifying drivers of sex and gender differences in ADRD throughout the world is a first step in developing interventions unique to each geographical and sociocultural area to reduce these inequities and to ultimately reduce global ADRD risk. HIGHLIGHTS: The burden of dementia is unevenly distributed geographically and by sex and gender. Scientific advances in genetics and biomarkers challenge beliefs that sex is binary. Discrimination against women and sex and gender minority (SGM) populations contributes to cognitive decline. Sociocultural factors lead to gender inequities in Alzheimer's disease and related dementias (ADRD) worldwide.

Research Attitudes Questionnaire scores predict Alzheimer's disease clinical trial dropout.

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.

Relationships Between Cognitive Complaints and Quality of Life in Older Adults With Mild Cognitive Impairment, Mild Alzheimer Disease Dementia, and Normal Cognition.

PURPOSE: To examine in persons with varying degrees of cognitive impairment the relationship between self-reports of cognitive complaints and quality of life (QOL). METHODS: Older adults (n=259) with normal cognition, mild cognitive impairment (MCI), and mild stage Alzheimer disease (AD) dementia completed tests of cognition and self-report questionnaires about QOL and 3 kinds of cognitive complaints: cognitive difficulties, distress from cognitive difficulties, and believing you had more memory problems than most people. Bivariate, multivariable, and multivariate regression analyses assessed relationships between domains of QOL and each cognitive complaint. RESULTS: Bivariate and multivariable analyses controlling for severity of cognitive and functional impairment found that cognitive complaints were related to relatively lower quality of daily life (QOL-AD, Dementia Quality of Life Scale), greater depression (GDS), more anxiety (BAI), higher perceived stress (PSS), and lower general mental well-being (SF-12 MCS). DISCUSSION: Cognitive complaints have robust associations with QOL. These findings have implications for AD prevention trials and management of clinical populations.

Identifiable Characteristics and Potentially Malleable Beliefs Predict Stigmatizing Attributions Toward Persons With Alzheimer's Disease Dementia: Results of a Survey of the U.S. General Public.

The general public's views can influence whether people with Alzheimer's disease (AD) experience stigma. The purpose of this study was to understand what characteristics in the general public are associated with stigmatizing attributions. A random sample of adults from the general population read a vignette about a man with mild Alzheimer's disease dementia and completed a modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). Multivariable ordered logistic regressions were used to examine relationships between personal characteristics and FS-ADS ratings. Older respondents expected that persons with AD would receive less support (OR = 0.82, p = .001), have social interactions limited by others (OR = 1.13, p = .04), and face institutional discrimination (OR = 1.13, p = .04). Females reported stronger feelings of pity (OR = 1.57, p = .03) and weaker reactions to negative aesthetic features (OR = 0.67, p = .05). Those who believed strongly that AD was a mental illness rated symptoms more severely (OR = 1.78, p = .007). Identifiable characteristics and beliefs in the general public are related to stigmatizing attributions toward AD. To reduce AD stigma, public health messaging campaigns can tailor information to subpopulations, recognizable by their age, gender, and beliefs.

What features of stigma do the public most commonly attribute to Alzheimer's disease dementia? Results of a survey of the U.S. general public.

INTRODUCTION: Understanding the prevalence of beliefs, attitudes, and expectations about Alzheimer's disease dementia in the public could inform strategies to mitigate stigma. METHODS: Random sample of 317 adults from the U.S. public was analyzed to understand reactions toward a man with mild-stage Alzheimer's disease dementia. RESULTS: In adjusted analyses, over half of respondents expected the person to be discriminated against by employers (55.3%; 95% confidence interval [CI] = 47.0-65.2) and be excluded from medical decision-making (55.3%; 95% CI = 46.9-65.4). Almost half expected his health insurance would be limited based on data in the medical record (46.6%; 95% CI = 38.0-57.2), a brain imaging result (45.6%, 95% CI = 37.0-56.3), or genetic test result (44.7%; 95% CI = 36.0-55.4). DISCUSSION: Public education and policies are needed to address concerns about employment and insurance discrimination. Studies are needed to discover how advances in diagnosis and treatment may change Alzheimer's disease stigma.

Impact of a Rewards-Based Incentive Program on Promoting Fruit and Vegetable Purchases.

Objectives. We assessed the impact of a rewards-based incentive program on fruit and vegetable purchases by low-income families. Methods. We conducted a 4-phase prospective cohort study with randomized intervention and wait-listed control groups in Philadelphia, Pennsylvania, in December 2010 through October 2011. The intervention provided a rebate of 50% of the dollar amount spent on fresh or frozen fruit and vegetables, reduced to 25% during a tapering phase, then eliminated. Primary outcome measures were number of servings of fruit and of vegetables purchased per week. Results. Households assigned to the intervention purchased an average of 8 (95% confidence interval [CI] = 1.5, 16.9) more servings of vegetables and 2.5 (95% CI = 0.3, 9.5) more servings of fruit per week than did control households. In longitudinal price-adjusted analyses, when the incentive was reduced and then discontinued, the amounts purchased were similar to baseline. Conclusions. Investigation of the financial costs and potential benefits of incentive programs to supermarkets, government agencies, and other stakeholders is needed to identify sustainable interventions.

Pre-ordering lunch at work. Results of the what to eat for lunch study.

The objective of this study was to evaluate an intervention that combined mindful eating and online pre-ordering to promote healthier lunch purchases at work. The study took place at an urban hospital with 26 employees who were overweight or obese. The design included a contemporaneous comparison with delayed-treatment control and a three-phase prospective study. A minimum 4-week baseline period preceded a 4-week full-intervention, in which participants received mindful eating training, pre-ordered their lunches, and received price discounts toward lunch purchases. In a 4-week reduced intervention phase, participants pre-ordered lunches without price discounts. Participant lunch purchases were tracked electronically at the point of purchase. The primary outcome measures were the amounts of kilocalories and fat grams in purchased lunches. In contemporaneous comparisons, the treatment group purchased lunches with an average of 144.6 fewer kilocalories (p = 0.01) and 8.9 fewer grams of fat (p = 0.005) compared to controls. In multivariable longitudinal analyses, participants decreased the average number of calories in their meals by 114.6 kcal per lunch and the average grams of fat by 5.4 per lunch during the partial-intervention compared to the baseline (p < 0.001). At the end of the study, a moderate increase was observed in participants' overall mindful eating behaviors as compared to the beginning of the study (p < 0.001). The majority of participants (92%) said they would use the pre-ordering system if offered in the future. Combined mindful eating training and online pre-ordering appears a feasible and useful worksite intervention to improve food choices by employees.

Buying food on sale: a mixed methods study with shoppers at an urban supermarket, Philadelphia, Pennsylvania, 2010-2012.

INTRODUCTION: The obesity epidemic has drawn attention to food marketing practices that may increase the likelihood of caloric overconsumption and weight gain. We explored the associations of discounted prices on supermarket purchases of selected high-calorie foods (HCF) and more healthful, low-calorie foods (LCF) by a demographic group at high risk of obesity. METHODS: Our mixed methods design used electronic supermarket purchase data from 82 low-income (primarily African American female) shoppers for households with children and qualitative data from focus groups with demographically similar shoppers. RESULTS: In analyses of 6,493 food purchase transactions over 65 weeks, the odds of buying foods on sale versus at full price were higher for grain-based snacks, sweet snacks, and sugar-sweetened beverages (odds ratios: 6.6, 5.9, and 2.6, respectively; all P < .001) but not for savory snacks. The odds of buying foods on sale versus full price were not higher for any of any of the LCF (P ≥ .07). Without controlling for quantities purchased, we found that spending increased as percentage saved from the full price increased for all HCF and for fruits and vegetables (P ≤ .002). Focus group participants emphasized the lure of sale items and took advantage of sales to stock up. CONCLUSION: Strategies that shift supermarket sales promotions from price reductions for HCF to price reductions for LCF might help prevent obesity by decreasing purchases of HCF.

Sex, gender, sexual orientation, and more: Sexual diversity in Alzheimer's research needs a new lens to achieve inclusive research and generalizable results.

Diversity, Equity, and Inclusion (DEI) efforts in Alzheimer's disease and related dementia (ADRD) research are guiding the adoption of two-step self-report questions that capture research participants' identity based on categories of sex, sexual orientation, and gender identity. The intent is to facilitate inclusion and representation of sexual and gender minoritized (SGM) communities in ADRD research. The data from using these questions are on a collision course with another National Institute of Aging initiative, which is aimed at understanding sex differences in ADRD mechanisms. Here, we critically analyze the goals and methods of the two initiatives. We propose that, in addition to being SGM focused, DEI efforts are needed to expand how scientists consider and measure sexual diversity itself. Highlights: Sex, sexual orientation, and gender identity (SSOGI) will be asked in ADRD studies.SSOGI data will expand representation of research participant identities.SSOGI data are on a collision course with sex differences research.Both emphasize sexual diversity (SD) largely as SSOGI identity categories.Diversity, Equity, and Inclusion efforts must develop SD methods in ADRD research.

Sex modifies effects of imaging and CSF biomarkers on cognitive and functional outcomes: a study of Alzheimer's disease.

Alzheimer's disease (AD) is a neurodegenerative disorder characterized by memory and functional impairments. Two of 3 patients with AD are biologically female; therefore, the biological underpinnings of this diagnosis disparity may inform interventions slowing the AD progression. To bridge this gap, we conducted analyses of 1078 male and female participants from the Alzheimer's Disease Neuroimaging Initiative to examine associations between levels of cerebral spinal fluid (CSF)/neuroimaging biomarkers and cognitive/functional outcomes. The Chow test was used to quantify sex differences by determining if biological sex affects relationships between the studied biomarkers and outcomes. Multiple magnetic resonance imaging (whole brain, entorhinal cortex, middle temporal gyrus, fusiform gyrus, hippocampus), position emission tomography (AV45), and CSF (P-TAU, TAU) biomarkers were differentially associated with cognitive and functional outcomes. Post-hoc bootstrapped and association analyses confirmed these differential effects and emphasized the necessity of using separate, sex-stratified models. The studied imaging/CSF biomarkers may account for some of the sex-based variation in AD pathophysiology. The identified sex-varying relationships between CSF/imaging biomarkers and cognitive/functional outcomes warrant future biological investigation in independent cohorts.

Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia.

BACKGROUND AND OBJECTIVES: Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers' experiences of witnessing paradoxical lucidity. RESEARCH DESIGN AND METHODS: Participants were family caregivers of persons living with advanced dementia caused by a neurodegenerative disease producing significant impairments in communication. Semistructured interviews elicited the caregivers' experiences of plausible lucid episodes. Data analysis used a thematic analysis approach. RESULTS: Most caregivers reported at least 1 episode of lucidity. Episodes were typically brief. Most involved utterances, but nonverbal behaviors were also common. The mental capacities associated with these behaviors included recognition, awareness of surroundings, recognizing others' emotions, and goal-directed behavior. Most caregivers' reactions were positive. Episodes did not lead to changes in major medical decisions but instead to efforts to either modify or reinforce daily caregiving efforts. DISCUSSION AND IMPLICATIONS: Episodes of lucidity were common, a finding seen in other studies. If prevalence studies confirm this, the qualifier "paradoxical" should be eliminated. The caregivers' familiarity with the person living with dementia allowed them to attribute meaning to subtle behaviors that might not otherwise be detected or considered lucid. Clinicians who care for persons with advanced-stage dementia should routinely ask caregivers about episodes of lucid communication and their emotional reactions.