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Results of bivariate and multivariable comparisons of Alzheimer's stigma between Black and White participants reacting to a patient at a memory center visit (N = 2506). (A) Results of bivariate model of differences in FS‐ADS scores between Black and White participants toward a patient at a memory center. (B) Results of multivariable model of differences in FS‐ADS scores between Black and White participants toward a patient at a memory center. Vertical line marks reference point. 95%CI = normal 95% confidence interval. FS‐ADS = Family Stigma in Alzheimer's Disease Scale. OR = odds ratio from ordered logistic regression. Full model controls for covariates of participant age, gender, Hispanic ethnicity, and educational attainment.
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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 tol...
Citations
... This can help mitigate the harmful effects of stigma that may disproportionately impact individuals from different demographic backgrounds. 72 Furthermore, variability in diagnostic confidence and the specifics of tests performed must be considered, as these factors can influence the early diagnosis of AD. 73 It is important to evaluate the potential biases of ML methods to mitigate age-or sex-related risk factors influencing disease detection. Notably, in our present study, we analyzed misclassification proportions as a function of age and sex, and we did not observe consistent differences across test-set folds on average. ...
Background
Alzheimer's disease (AD) is a neurodegenerative disorder that profoundly alters brain function and organization. Currently, there is a lack of validated functional biomarkers to aid in diagnosing and classifying AD. Therefore, there is a pressing need for early, accurate, non-invasive, and accessible methods to detect and characterize disease progression. Electroencephalography (EEG) has emerged as a minimally invasive technique to quantify functional changes in neural activity associated with AD. However, challenges such as poor signal-to-noise ratio—particularly for resting-state (rsEEG) recordings—and issues with standardization have hindered its broader application.
Objective
To conduct a pilot analysis of our custom automated preprocessing and feature extraction pipeline to identify indicators of AD and correlates of disease progression.
Methods
We analyzed data from 36 individuals with AD and 29 healthy participants recorded using a standard 19-channel EEG and features were processed using our custom end-t-end pipeline. Various features encompassing amplitude, power, connectivity, complexity, and microstates were extracted. Unsupervised machine learning (uniform manifold approximation and projection) and supervised learning (random forest classifiers with nested cross-validation) were used to characterize the dataset and identify differences between AD and healthy groups.
Results
Our pipeline successfully detected several new and previously established EEG-based measures indicative of AD status and progression, demonstrating strong external validity.
Conclusions
Our findings suggest that this automated approach provides a promising initial framework for implementing EEG biomarkers in the AD patient population, paving the way for improved diagnostic and monitoring strategies.
... All statistical models statistically controlled for participant age and groupings by gender and race, which we have shown in prior studies to affect AD stigma (S. Stites et al., 2020Stites et al., , 2023S. D. Stites, Johnson, et al., 2018). ...
Research on caregivers suggests interpersonal contact with persons with Alzheimer’s disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in antistigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge, and AD stigma, we can develop improved ways of reducing stigma and avoid unintended consequences. In a factorial design experiment, 2,371 participants read a vignette describing a fictional person; the vignette varied on clinical symptom stage, AD biomarker result, and treatment availability. Multivariable analyses assessed the effects of caregiver experience, interpersonal contact, and different domains of disease-oriented knowledge on modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS) outcomes. Interaction analyses tested how clinical features may modify those associations. AD caregiver experience was associated with higher reactions on six of the seven FS-ADS domains. Disease-oriented knowledge, independent of content domain, did not substantially affect those associations. However, knowledge of caregiving, treatment, and life impact were associated with lower FS-ADS scores, and knowledge about disease course and risk factors were associated with higher reactions on FS-ADS domains. Knowledge of treatment modified reactions to symptoms and treatment availability. Knowledge of disease course modified reactions to a biomarker result. AD caregiver experience and interpersonal contact did not modify associations between clinical characteristics and FS-ADS domains. Distinct associations among different domains of AD knowledge and stigma outcomes should be considered when developing antistigma campaigns. Failure to do so risks worsening rather than alleviating AD stigma.
... Thus, use of CSF may have caused differential sample bias between the trials. Additionally, a recent study showed that participants have higher confidence in their AD diagnosis when the clinical workup includes brain scans as compared to other assessments (35) and previous analyses of the EARLY trial disclosure data suggested potential differences in reactions to biomarker information based on the modality of the test (36). Finally, the EARLY trial also had a greater geographic representation compared to the A4 trial, including recruitment from more countries, perhaps introducing important cultural variations (36,37). ...
Background
Many cognitively unimpaired older adults are interested in learning their Alzheimer’s disease (AD) biomarker status, but little is known about motivations to undergo biomarker testing and result disclosure in the setting of preclinical AD trials.
Objectives
Examine whether motivations to undergo AD biomarker testing and disclosure differ for individuals who have elevated amyloid compared to those with not elevated amyloid, and whether disclosure of amyloid results impacts participants’ motivations.
Design, Setting, Participants
We conducted post-hoc analyses using data from the EARLY study, a preclinical AD trial of the beta-secretase inhibitor atabecestat. As part of the screening process of the trial, participants underwent biomarker testing and disclosure. We analyzed data from n=2241 participants.
Measurements
We analyzed data from the Views and Perceptions of Amyloid Imaging (VPAI), a 9-item questionnaire assessing how strongly participants agreed with motivating factors for undergoing amyloid testing. The VPAI was administered at the first screening visit and again after amyloid disclosure.
Results
Prior to amyloid disclosure, a greater proportion of participants in the elevated amyloid group responded at the two highest levels of endorsement for the items, “to confirm the feeling that I might already be developing symptoms of AD dementia” (p<0.001) and “to prepare my family for my possible illness in the future” (p=0.008), compared to participants in the not elevated amyloid group. Following disclosure, the not elevated amyloid group had higher odds of positive change in categorical VPAI item level scores for the items “to put mind at ease” (OR: 0.54; p<0.001), “to confirm the feeling that I might already be developing symptoms of AD dementia” (OR: 0.79; p=0.049), and “to prepare my family for my possible illness in the future” (OR: 0.67; p=<0.001), while the elevated amyloid group had higher odds of positive change for the item “curiosity” (OR:1.32; p=0.014).
Conclusions
Investigators might consider adjusting recruitment strategies for future trials to align with the motivations to undergo biomarker testing and disclosure most strongly endorsed by participants with elevated amyloid.
Electronic Supplementary Material
Supplementary material is available in the online version of this article at 10.14283/jpad.2024.157.
... These experiences could act together, leading to a variety of beliefs and experiences among subgroups of Black adults that affect AD stigma (Herrmann et al. 2018). Yet, to date, no survey studies have characterized AD stigma among Black adults and only four studies (3 with small subgroups) have compared AD stigma in Black adults to White groups (Johnson et al. 2015;Stites et al. 2024;Stites, Rubright, and Karlawish 2018b). While these latter studies offer information about how AD stigma may differ between Black and White adults, they offer no data about within race heterogeneity. ...
... The completion rate was 91.5%. A subset of the participants was included in the sample of the general population, which was previously analyzed, and a study comparing responses of Black and White participants (Stites, Gill, et al. 2022;Stites et al. 2024). The sample for this current study, comprised of 1,140 Black respondents, is a combination of those individuals who were included in the general population sample (n = 211) and a group asked to participate specifically in this study (n = 929). ...
... x P < 0.05, y P < 0.01, z P < 0.001 positive biomarker test result may be similar to that experienced by their White counterparts (Stites et al. 2024), Black adults may contend with this stigma atop already known social injustice and disparities in healthcare. Implementation studies of biomarker testing are needed to understand and help ameliorate race-specific concerns, promote access to early diagnosis, and guide the equitable translation of AD biomarker diagnosis into routine clinical practice. ...
Objective:
We urgently need to understand Alzheimer's disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black participants and test how AD biomarker test results may affect this stigma.
Design:
We surveyed a sample of 1,150 self-identified Black adults who were randomized to read a vignette describing a fictional person, who was described as either having a positive or negative biomarker test result. After reading the vignette, participants completed the modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). We compared FS-ADS scores between groups defined by age, gender, and United States Census region. We examined interactions between these groupings and AD biomarker test result.
Results:
Participants over age 65 had lower scores (lower stigma) on all 7 FS-ADS domains compared to those under 65: structural discrimination, negative severity attributions, negative aesthetic attributions, antipathy, support, pity, and social distance. In the biomarker positive condition, worries about structural discrimination were greater than in the biomarker negative condition and statistically similar in the two age groups (DOR, 0.39 [95%CI, 0.22-0.69]). This pattern of results was similar for negative symptom attributions (DOR, 0.51 [95%CI, 0.28-0.90]).
Conclusion:
While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adults.
... No prior study has been published with this sample. Some participants in this sample (n = 427, 33%) were included in samples reported on in prior studies (Stites et al., 2022(Stites et al., , 2024. The current study is the first to report on older adults and the first to test whether reading about a positive versus negative biomarker result affects an individual's AD diagnosis confidence. ...
Objectives
Early diagnosis of Alzheimer’s disease (AD) using brain scans and other biomarker tests will be essential to increasing the benefits of emerging disease-modifying therapies, but AD biomarkers may have unintended negative consequences on stigma. We examined how a brain scan result affects AD diagnosis confidence and AD stigma.
Methods
The study used a vignette-based experiment with a 2×2×3 factorial design of main effects: a brain scan result as positive or negative, treatment availability and symptom stage. We sampled 1,283 adults ages 65 and older between 11 June and 3 July 2019. Participants (1) rated their confidence in an AD diagnosis in each of four medical evaluations that varied in number and type of diagnostic tools and (2) read a vignette about a fictional patient with varied characteristics before completing the Modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS). We examined mean diagnosis confidence by medical evaluation type. We conducted between-group comparisons of diagnosis confidence and FS-ADS scores in the positive versus negative brain scan result conditions and, in the positive condition, by symptom stage and treatment availability.
Results
A positive versus negative test result corresponds with higher confidence in an AD diagnosis independent of medical evaluation type (all p<0.001). A positive result correlates with stronger reactions on 6 of 7 FS-ADS domains (all p<0.001).
Discussion
A positive biomarker result heightens AD diagnosis confidence but also correlates with more AD stigma. Our findings inform strategies to promote early diagnosis and clinical discussions with individuals undergoing AD biomarker testing.
INTRODUCTION
Dementia is underdiagnosed in the United States. Understanding of older adults’ experiences with screening is needed to optimize diagnosis.
METHODS
US adults ages 65 to 80 (N = 1298) were surveyed on experiences with cognitive screening and blood biomarker (BBM) testing. Regression models estimated associations between characteristics and screening use.
RESULTS
Most older adults were aware of screening (71%); 41% reported ever being screened. Older age, higher education, retirement, poorer health, and family history of dementia were associated with higher odds of screening; Hispanic and non‐Hispanic Asian race/ethnicity were associated with lower odds (p < .05). Most older adults were unaware of BBM (81%); few wanted testing immediately (9%). Although older adults held positive views about screening and BBM, half reported concerns about distress or stigma if tests indicated risk.
DISCUSSION
Cognitive screening rates remain low. Older adults view screening and BBM as useful to inform health decisions but have concerns about potential harms.
Highlights
Only one in five older US adults report having cognitive screening in the past year.
Sociodemographic and health factors may influence whether older adults receive cognitive screening.
Most older adults have positive views about cognitive screening and BBM testing.
Many older adults would be concerned about distress or stigma if test result indicated dementia risk.
Biomarkers for predicting Alzheimer’s disease (AD) are advancing and their implementation in various healthcare systems is imminent. There is a need for ethical standards addressing information needs, socio-ethical concerns, and expectations of healthy and at-risk persons. We present an ethical approach that integrates different existing ethical frameworks and discussion of our empirical, cross-cultural findings in a multi-layered perspective by addressing three levels. The micro-level focuses on the communication between counseling professionals, persons at risk or in an early stage of dementia, and family members. The meso-level addresses interprofessional cooperation and exchange as a key element for best person-centered care. The macro-level considers public health promotion, the media, and public-funded research. This approach allows to address key ethical concepts including beneficence, non-maleficence, autonomy, informational self-determination, empowerment, and justice. Our contribution specifically examines the ethical challenges associated with AD prediction by means of biomarkers, based on insights from a German-Israeli comparison, and promotes a transdisciplinary discussion across different healthcare contexts. We propose a reflection on three levels to go beyond the clinical counseling context and to consider the rapidly evolving field of biomarkers in the coming years. Our ethical-practical recommendations should not be considered final, but rather procedural and will require continuous adaptation regarding culturally varying practices, new algorithms, meta-analyses, and re-evaluation of established recommendations.
In the past 5 years, we have witnessed the first approved Alzheimer disease (AD) disease-modifying therapy and the development of blood-based biomarkers (BBMs) to aid the diagnosis of AD. For many reasons, including accessibility, invasiveness and cost, BBMs are more acceptable and feasible for patients than a lumbar puncture (for cerebrospinal fluid collection) or neuroimaging. However, many questions remain regarding how best to utilize BBMs at the population level. In this Review, we outline the factors that warrant consideration for the widespread implementation and interpretation of AD BBMs. To set the scene, we review the current use of biomarkers, including BBMs, in AD. We go on to describe the characteristics of typical patients with cognitive impairment in primary care, who often differ from the patient populations used in AD BBM research studies. We also consider factors that might affect the interpretation of BBM tests, such as comorbidities, sex and race or ethnicity. We conclude by discussing broader issues such as ethics, patient and provider preference, incidental findings and dealing with indeterminate results and imperfect accuracy in implementing BBMs at the population level.
