The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research.

BACKGROUND: In the asymptomatic "preclinical" phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post-disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations. METHODS: We enrolled a diverse cohort of 329 adults (184 non-Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed-methods analysis, we identified responses related to willingness to share results. RESULTS: A majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing. DISCUSSION: Participants' interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.

Wisconsin Healthcare Utilization Cost Among American Indians/Alaska Natives with and without Alzheimer's Disease and Related Dementias.

Individuals with Alzheimer's disease and related dementias (ADRD) accrue higher healthcare utilization costs than peers without ADRD, but incremental costs of ADRD among American Indians/Alaska Natives (AI/AN) is unknown. State-wide paid electronic health record data were retrospectively analyzed using percentile-based bootstrapped 95% confidence intervals of the weighted mean difference of total 5-year billed costs to compare total accrued for non-Tribal and Indian Health Service utilization costs among Medicaid and state program eligible AI/AN, ≥40 years, based on the presence/absence of ADRD (matching by demographic and medical factors). AI/AN individuals with ADRD accrued double the costs compared to those without ADRD, costing an additional $880.45 million to $1.91 billion/year.

Psychological well-being and cognitive aging in Black, Native American, and White Alzheimer's Disease Research Center participants.

Psychological well-being is associated with cognition in later life but has not been examined across diverse populations-including minoritized communities at disproportionately high risk of dementia. Further, most previous work has not been able to examine links between specific facets of psychological well-being and performance within distinct cognitive domains that can capture subclinical impairment. Using a well-characterized sample followed through enrollment in an NIH-funded Alzheimer's Disease Center, we sought to test these associations within three racial groups at baseline. Participants were N = 529 cognitively unimpaired Black, American Indian/Alaska Native (AI/AN), and white middle-aged and older adults (mean age = 63.6, SD = 8.1, range = 45-88 years) enrolled in the Wisconsin Alzheimer's Disease Research Center's Clinical Core. Predictors included validated NIH Toolbox Emotion Battery scales assessing positive affect, general life satisfaction, and meaning and purpose. Outcomes included performance on widely used tests of executive functioning and episodic memory. We conducted race-stratified regression models to assess within-group relationships. Black and AI/AN participants reported lower life satisfaction than white participants. Racial disparities were not observed for positive affect or meaning and purpose scores. Across groups, life satisfaction predicted better executive functioning. Similar associations were observed for positive affect in Black and AI/AN samples but not among whites. In general, well-being measures were not related to performance on tests of episodic memory. Our results highlight well-being as a potentially important determinant of late-life cognitive health, particularly executive functioning, that is modifiable if older adults are connected with appropriate resources and supports. Further, psychological well-being may represent a potent target for brain health interventions tailored for Black and Native communities.

Subjective Cognitive Decline Associated with Discrimination in Medical Settings among Transgender and Nonbinary Older Adults.

BACKGROUND: Transgender and nonbinary (TNB) individuals report greater subjective cognitive decline (SCD) compared to non-TNB people. SCD involves self-reported problems with memory and thinking and is a potential risk for Alzheimer's disease and related dementias (ADRD). We explored psychosocial factors, such as discrimination in medical settings, associated with SCD in a sample of TNB older adults. METHODS: We utilized cross-sectional data on aging health, SCD (memory complaints and worsening memory in the past year), and discrimination in medical settings from The PRIDE Study for LGBTQ+ adults aged 50+ including TNB adults (n = 115). Associations were tested using multivariate logistic regression. RESULTS: Nearly 16% of TNB participants rated their memory as poor/fair, and 17% reported that their memory was worse than a year ago. TNB older adults with SCD were more likely to report experiencing discrimination in medical settings. After adjustment, those reporting discrimination in medical settings had 4.5 times higher odds of reporting worsening memory than those who did not (OR: 4.5; 95%-CI: 1.5-13.2; p = 0.006), and 7.5 times more likely to report poor/fair memory (OR: 7.49; 95%-CI: 1.7-32.8; p = 0.008); Conclusions: TNB older adults reported high frequencies of SCD and discrimination in medical settings. Further research exploring affirmative cognitive screening and healthcare services is needed.

What Influences the Willingness of Blacks and African Americans to Enroll in Preclinical Alzheimer's Disease Biomarker Research? A Qualitative Vignette Analysis.

BACKGROUND: Alzheimer's disease (AD) begins with an asymptomatic "preclinical" phase, in which abnormal biomarkers indicate risk for developing cognitive impairment. Research is increasingly focused on validating biomarkers to improve reliable diagnosis and timely clinical treatment of AD. Most preclinical biomarker research lacks adequate representation of Black/African American and other racially and ethnically minoritized individuals, limiting the applicability of data to these groups. This may exacerbate existing disparities by hindering diagnosis and treatment among racially and ethnically minoritized individuals. OBJECTIVE: Understand the factors influencing willingness of Blacks/African Americans to participate in AD biomarker research and identify opportunities to improve enrollment. METHODS: We enrolled Blacks/African Americans (N = 145) between 46-85 years of age who had previously participated in AD research. Participants gave open-ended responses to a vignette describing a hypothetical biomarker research study. Using qualitative content analysis, we identified themes that motivated and discouraged enrollment in AD biomarker research. RESULTS: Participant responses were categorized into several themes. Themes motivating participation included a desire to know their biomarker results and to support research. Major themes discouraging participation included concerns about potential negative psychological outcomes to learning one's increased risk for AD, doubt about the usefulness of testing, and worry about the potential physical harms of testing. CONCLUSION: Understanding themes motivating and discouraging AD preclinical biomarker research participation may inform research material development, approach to community engagement, and/or trial design to increase enrollment of Blacks/African Americans.

Alzheimer's disease biomarkers in Black and non-Hispanic White cohorts: A contextualized review of the evidence.

Black Americans are disproportionately affected by dementia. To expand our understanding of mechanisms of this disparity, we look to Alzheimer's disease (AD) biomarkers. In this review, we summarize current data, comparing the few studies presenting these findings. Further, we contextualize the data using two influential frameworks: the National Institute on Aging-Alzheimer's Association (NIA-AA) Research Framework and NIA's Health Disparities Research Framework. The NIA-AA Research Framework provides a biological definition of AD that can be measured in vivo. However, current cut-points for determining pathological versus non-pathological status were developed using predominantly White cohorts-a serious limitation. The NIA's Health Disparities Research Framework is used to contextualize findings from studies identifying racial differences in biomarker levels, because studying biomakers in isolation cannot explain or reduce inequities. We offer recommendations to expand study beyond initial reports of racial differences. Specifically, life course experiences associated with racialization and commonly used study enrollment practices may better account for observations than exclusively biological explanations.

Subjective cognitive decline higher among sexual and gender minorities in the United States, 2015-2018.

INTRODUCTION: Subjective cognitive decline (SCD) represents self-reported problems with memory, a possible early sign of dementia. Little is known about SCD among sexual and gender minority (SGM) adults who identify as lesbian, gay, bisexual, and/or transgender or gender non-binary. METHODS: Data were weighted to represent population estimates from 25 states' 2015-2018 Behavioral Risk Factor Surveillance System to describe SCD in adults ≥45 years by SGM status. Logistic regression tested associations between demographic and health conditions. RESULTS: SCD prevalence was higher in SGM (15.7%; 95% confidence interval [CI]:13.1-18.2) than in non-SGM adults (10.5%; 95% CI:10.1-10.9; P < .0001). SGM adults with SCD were also more likely to report functional limitations due to SCD than non-SGM adults with SCD, 60.8% versus 47.8%, P = .0048. Differences in SCD by SGM status were attenuated after accounting for depression. DISCUSSION: Higher prevalence of SCD in SGM adults highlights the importance of ensuring inclusive screenings, interventions, care services, and resources for SGM adults.

Cigarette Smoking Status, Cigarette Exposure, and Duration of Abstinence Predicting Incident Dementia and Death: A Multistate Model Approach.

BACKGROUND: To fully characterize the risk for dementia associated with cigarette smoking, studies must consider competing risks that hinder the observation of dementia or modify the chance that dementia occurs (i.e., death). Extant research examining the competing risks fails to account for the occurrence of death following dementia, limiting our understanding of the relation between smoking and dementia. OBJECTIVE: Examine the impact of smoking status, lifetime smoking exposure, and duration of abstinence on incident dementia, death following dementia, and death without dementia. METHODS: Multi-state models estimated hazard ratios (HR) for 95% confidence interval (CI) of 10,681 cognitively healthy adults for transition from baseline to dementia, baseline to death, and dementia to death based on smoking status, lifetime cigarette exposure, and abstinence duration. RESULTS: Compared to never smokers, current smokers had increased risk of dementia (HR = 1.66; 95% CI 1.18- 2.32; p = 0.004), and death from baseline (HR = 2.98; 95% CI 2.24- 3.98; p < 0.001) and incident dementia (HR = 1.88; 95% CI 1.08- 3.27; p = 0.03). Pack years increased risk of death from baseline (HR = 1.01; 95% CI 1.00- 1.01; p < 0.001), but not dementia risk (HR = 1.00; 95% CI 1.00- 1.00; p = 0.78) or death following dementia (HR = 1.01; 95% CI 1.00- 1.01; p = 0.05). Recent quitters (quit < 10 years), compared to never smokers, had increased risk of death after baseline (HR = 2.31; 95% CI 1.55- 3.43; p < 0.001), but not dementia (HR = 1.17; 95% CI 0.73- 1.88; p = 0.52) or death following dementia (HR = 1.01; 95% CI 0.42- 2.41; p = 0.99). CONCLUSION: Current smoking increases the risk for dementia and death, but dementia is better attributed to smoking recency than lifetime exposure. Smoking cessation at any age might reduce these risks for cognitively healthy individuals.

Learning from Transmasculine Experiences with Health Care: Tangible Inlets for Reducing Health Disparities Through Patient-Provider Relationships.

Purpose: We examined health care experiences of transmasculine young adults to clarify factors contributing to mistrust in the health care system and identify tangible and modifiable means to address health disparities through improved patient-provider interactions. Thematic analysis highlights patterns within historical relationships between medical models and transmasculine embodiment, and provides guidance for health care clinicians, researchers, and policy makers to deliver competent services for transgender and gender diverse (TGD) individuals. Methods: The study team used qualitative methodology guided by interpretive phenomenological analysis. Semistructured interviews with 12 participants who self-identified as transmasculine were conducted, transcribed, and coded thematically. Results: Participants were a community sample of 12 young adults 18-35 years of age (M=23, standard deviation=3.74), who self-identified as transmasculine. Three participants identified as a racial/ethnic minority. Participants were highly educated, with most completing at least some college. The superordinate thematic domain Perspectives on Health Care emerged, under which three subthemes were nested: (1) an essentialist, binary medical model is inaccurate and oppressive, (2) consequences of medicalizing gender (i.e., gender as a diagnosis), and (3) recommendations to improve health care. Conclusions: Qualitative analysis revealed specific ways in which the relationship between transmasculine individuals and current health care systems are fraught with difficulties, including the impact of stigma, gatekeeping, and inaccuracies, in current diagnostic criteria. Participants shared lived experiences and offered innovative ideas to improve health care delivery, such as challenging socialized biases, increased education, and immersion in TGD communities to advocate for change in research, practice, and policy.

Transgender and Gender Nonconforming Youths' Public Facilities Use and Psychological Well-Being: A Mixed-Method Study.

Purpose: In this study, we explored experiences and feelings of safety in public facilities in relation to psychological well-being among transgender and gender nonconforming (TGNC) youth in the Midwest in the summer of 2016, in the context of ongoing legislative proposals and regulations regarding school and public bathroom use in the United States. Methods: We used a mixed-method approach, with (1) a self-administered, paper-and-pencil survey of 120 TGNC youth, focusing on differences of self-esteem, resilience, quality of life (QoL), perceived stigma, feelings of safety, and experiences of public facility use and (2) two focus group interviews (n=9) in which TGNC youth discussed individual perceptions, attitudes, and experiences of bathroom use outside participants' homes. The samples consisted predominantly of individuals assigned female at birth and currently of trans-masculine identity. Results: TGNC youth in our sample who reported that they had felt unsafe in bathrooms due to appearance or gender identity had significantly lower levels of resilience (mean(felt safe)=125.7 vs. mean(felt unsafe)=116.1; p=0.03, Cohen's d=0.44) and QoL (mean(felt safe)=59.1 vs. mean(felt unsafe)=51.9; p=0.04, Cohen's d=0.39), compared to those who felt safe. Meanwhile, feeling unsafe in bathrooms was associated with a greater level of perceived LGBT stigma (mean(felt safe)=2.3 vs. mean(felt unsafe)=2.6; p=0.03, Cohen's d=0.41) and problematic anxiety in the past year (χ2 (1)=4.06; p=0.04). Individuals in the focus groups provided specific examples of their experiences of and concerns about locker room or bathroom use in public facilities, and on the impact of school bathroom-related policies and legislation on them. Conclusion: Perceptions of safety related to bathroom use are related to psychological well-being among TGNC youth. Our predominantly trans-masculine youth sample indicated that choice of bathroom and locker room use is important and that antiharassment policies need to support students' use of their choice of bathrooms. This is particularly important information given debate of so-called bathroom bills, which attempt to restrict public bathroom use for TGNC youth, creating less choice and more stress and fear among these individuals.