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

Abstract

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.

Full text

Received: 26 June 2023 Revised: 21 September 2023 Accepted: 25 October 2023
DOI: 10.1002/alz.13558
RESEARCH ARTICLE
How reactions to a brain scan result differ for adults based on
self-identified Black and White race
Shana D. Stites1Emily A. Largent2Rosalie Schumann1Kristin Harkins3
Pamela Sankar2Abba Krieger4
1Department of Psychiatry, Perelman School
of Medicine, University of Pennsylvania,
Philadelphia, Pennsylvania, USA
2Department of Medical Ethics and Health
Policy, Perelman School of Medicine,
University of Pennsylvania, Philadelphia,
Pennsylvania, USA
3Division of Geriatrics, Perelman School of
Medicine, University of Pennsylvania,
Philadelphia, Pennsylvania, USA
4Department of Statistics, Wharton School of
Business, University of Pennsylvania,
Philadelphia, Pennsylvania, USA
Correspondence
Shana D. Stites, PsyD, Department of
Psychiatry, PerelmanSchool of Medicine,
University of Pennsylvania, 3615 Chestnut St.,
Philadelphia, PA 19104, USA.
Email: stites@pennmedicine.upenn.edu
Funding information
University of Pennsylvania Alzheimer’s
Disease Research Center, Grant/Award
Number: P30 AG 072979; Alzheimer’s
Foundation of America; Healthy Brain
Research Network, Grant/AwardNumber:
U48 DP - 00505; Alzheimer’s Association,
Grant/AwardNumber: AARF-17-528934;
National Institute on Aging, Grant/Award
Numbers: 1K23AG065442,
1K23AG065442-03S1, K01AG064123;
Greenwall Faculty Scholars Program
Abstract
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 random-
ized 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.
KEYWORDS
Alzheimer’s biomarkers, Alzheimer’s stigma, diagnosis confidence, race
1INTRODUCTION
Advances in brain scans and other biomarkers are allowing Alzheimer’s
disease (AD) diagnosis earlier – even before onset of clinical symptoms.
Early diagnosis is essential for increasing benefits from disease-slowing
therapies. Because of known disparities in AD diagnosis rates between
Black and White adults,1,2 understanding whether Black and White
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided
the original work is properly cited.
© 2023 The Authors. Alzheimer’s & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer’s Association.
adults react differently to an AD diagnosis informed by a brain scan
would be useful to inform efforts aimed at limiting racial disparities in
early diagnosis.
Black Americans have long experienced mistreatment and inequity
in medicine and research; this includes the inhumane experiments J.
Marion Sims conducted on enslaved women in the nineteenth century,
intentional withholding of disease-curing treatment in the twentieth
Alzheimer’s Dement. 2024;20:1527–1537. wileyonlinelibrary.com/journal/alz 1527

1528 STITES ET AL.
century Tuskegee Study of Untreated Syphilis in the Nego Male, and
continues today as biases and barriers3to diagnosis and treatment.4,5
The combination of historical and present-day injustices influence trust
in medical care professionals for Black Americans.6Further, they may
influence perceptions of medical advances in diagnostic technologies.
A new patient visit at a memory center is a key entry point into
the healthcare system for early AD diagnosis. Many factors may con-
tribute to disparities in accessing care at a memory center; one is the
public stigma of AD.7Also called AD stigma, it refers to the nega-
tive perceptions, attitudes, emotions, and reactions directed at people
with AD.8–10 Black adults may experience greater ADstigma than their
White counterparts, given the disproportionately high burden of AD in
Black communities.11–16 That is, a substantial part of AD stigma stems
from individuals’ reactions to clinical symptoms,17 and Black adults
tend to experience a great burden of clinical symptoms.18 Understand-
ing how AD stigma differs between Black and White adults in reaction
to a new patient visit at a memory center would add to current under-
standing of AD stigma17 and offer novel information about how AD
stigma associated with the setting may impact healthcare inequities.
At a memory center, a diagnosis of AD is made by a clinician using
data from a clinical history interview, physical exam, and memory
tests.19 Given that new therapies may be most effective if deliv-
ered sooner rather than later,20 brain scans, blood tests, and other
biomarker testing are likely to be an increasingly important part of
diagnosis.20,21,22 Brain scans, for example, can measure amyloid and
tau burden in the brain, which could, in turn, confirm the presence
of targets for emerging therapies. If AD stigma differs between Black
and White adults based on a positive versus negative brain scan
result, it would offer novel data to understand how expanded use
of AD biomarker testing may differentially affect Black and White
populations.
The public’s confidence in an AD diagnosis may increase when
a brain scan or other biomarker test is used in the medical evalu-
ation. Higher confidence in an AD diagnosis would be a benefit of
AD biomarkers. With higher confidence in a diagnosis, individuals
and their families may focus on addressing care needs and future
life planning, rather than seeking out additional clinical evaluations in
order to feel confident that they received the correct diagnosis. Given
that Black patients are more often misdiagnosed than their White
counterparts,23,24 they may have lower confidence in an AD diagnosis,
particularly when medical tests are used in the evaluation.25
The present study compared responses in a sample of 1055 self-
identified Black and 1451 self-identified White adults. We compare
the groups’ AD stigma reactions to a vignette describing a fictional
patient at a new patient visit at a memory center. We hypothesize
Black adults may have worse AD stigma reactions to a new patient
visit at a memory center as compared to White adults based on known
healthcare disparities.23,24 We also compare the groups’ reactions
to the patient being told a positive or negative brain scan result. In
addition, we examine how AD diagnosis confidence differed between
the groups based on evaluations that varied in number and type of
assessment.
RESEARCH IN CONTEXT
1. Systematic review: Early diagnosis using biomarkers is
key for optimizing the benefits of emerging treatments
for Alzheimer’s disease (AD). Race-based differences in
public reactions to early diagnosis could worsen existing
disparities faced by Black Americans. The authors test
public reactions between self-described Black and White
adults.
2. Interpretation: While a positive AD biomarker test uni-
versally causes higher AD stigma, Black adults endorse
greater stigma in reaction to a memory center visit and
lower confidence in a biomarker-informed AD diagnosis
than their White counterparts.
3. Future directions: Education and outreach campaigns
that help mitigate stigma associated with specialty AD
care may contribute to better equity in access to early
diagnosis and treatment. Moreover, scientists also need
to understand sociocultural differences in AD diagnosis
confidence, its association with diagnosis accuracy and
utility.
2METHODS
2.1 Study design
This is a vignette-based experiment. The study flow is shown in Stites
et al.17 Data collection occurred between June 11 and July 3, 2019.
2.2 Setting and participant eligibility
Adults able to read English were invited at random from a large
research panel, maintained by Qualtrics. Consenting participants were
asked to complete demographic questions. Race was asked using
U.S. Census categories. Participants selected all race categories that
applied. We classified participants who reported more than one race in
a group called “multiple races.” Those who identified as both White and
Black alone or in combination with another race were excluded from
the study.
The response rate was 53%; the response rate among Black partici-
pants was 34% and White participants was 63%. The completion rate
was 91.3%, whereby 15.3% of Black participants and 3.8% of White
participants discontinued. The sample, which is comprised of 2506 par-
ticipants, is a combination of individuals who were either in a study
sample of the general population17 (n=1671) or an oversample of
Black or African Americans (n=835).
Participants read a paragraph about AD biomarker testing and then
answered a fact-based comprehension question (Supplemental Mate-
rial Section A). They were given two opportunities to answer correctly.

STITES ET AL.1529
TAB L E 1 Characteristics of sample and reference populations.
Characteristic
Black participants
(N=1055)
U.S. Black
adultsb
White participants
(N=1451)
U.S. White
adultsb
Age, mean (95%CI) 38.8 (37.9 to 39.8) 32.0 (31.9 to 32.1) 48.2 (47.3 to 49.1) 41.0 (40.9 to 41.0)
Women, % (95%CI) 53.8 (50.8 to 56.8) 36.3 (36.3 to 36.3) 50.9 (48.3 to 53.4) 50.8 (49.9 to 50.9)
Multiple races,a% (95%CI) 2.2 (1.5 to 3.3) 2.3 (2.3 to 2.3) 1.8 (1.2 to 2.6) 2.8 (2.8 to 2.8)
Hispanic or LatinX 7.3 (5.9 to 9.0) 2.5 (2.5 to 2.5) 15.8 (14.0 to 17.8) 8.7 (8.7 to 8.7)
Education, % (95%CI)
High school/GED or less 30.3 (27.6 to 33.2) 43. 2 (42.7 to 43.8) 44.0 (41.4 to 46.5) 35.5 (28.2 to 42.7)
Some college or 2-year degree 40.8 (37.8 to 43.8) 30.3 (29.7 to 30.8) 27.2 (25.0 to 29.6) 28.1 (27.8 to 28.3)
4-year college degree 19.1 (16.8 to 21.5) 12.0 (11.3 to 12.7) 19.2 (17.2 to 21.3) 18.3 (18.0 to 18.5)
Professional degree 9.9 (8.2 to 11.8) 5.5 (4.9 to 6.3) 9.6 (8.2 to 11.3) 9.4 (9.1 to 9.6)
Known someone with AD,c53.7 (51.1 to 56.3) 48.8 (45.8 to 51.8)
Note: Column percentages may not total 100 due to rounding.
Abbreviations: AD, Alzheimer’s disease; CI, confidence interval; GED, general educational development degree; U.S., United States.
aParticipants who reported more than one race, excluding those who identified as both White and Black..
bPopulation data from U.S. Census Bureau.35.
cPercentage responding affirmatively to the question “Do you have, or have you ever had, a person with AD as your relative, friend, or coworker?”
Participants who failed the second attempt (n=246) were excluded to
ensure a minimum level of understanding among participants. About
5.1% of Black participants and 12.6% of White participants failed the
screener.
2.3 Vignettes
Patient at a memory center visit. All participants read a vignette that
described a fictional person who presented for a new patient visit at
a memory center with an adult daughter. The vignette stated that the
patient answered a “routine set of questions” and underwent “mem-
ory testing.” No further information (i.e., interpretation of answers to
the questions or results of the memory testing) was provided in the
vignette.
The patient in the vignette’s race was not specified. We opted a
priori to not manipulate the fictional patient’s race but rather to use
data from this study to inform a future study that will experimentally
manipulate multiple signals related to race-based discrimination. We
controlled for patient age at three levels (60, 70, or 80 years old) and
gender at two levels (man or woman) to counterbalance effects that
could be attributed to these characteristics.
Brain scan test result. The vignette described the patient undergo-
ing a “brain scan test” for an AD biomarker to determine whether the
patient’s memory problems were caused by AD. Half of participants
read a vignette in which the patient learned a positive result and half
read about a patient who learned a negative result. The scan result
was reported as either “positive” or “negative” for an AD biomarker.
This result conforms to U.S. Food and Drug Administration labels for
positron emission tomography (PET) biomarker tests that measure
brain amyloid. Simple randomization was used to assign participants to
a vignette.
The effects of clinical symptom severity of the patient are held con-
stant in our analyses as the number of vignettes were balanced that
described symptoms reflecting Clinical Dementia Rating Scale scores
of 0 (no symptoms), 1 (mild dementia), or 2 (moderate dementia).26
The vignettes were also balanced in terms of whether the doctor in the
vignette explained that a treatment was or was not available. Vignette
samples are presented in Supplemental Material Section B.
2.4 Measures
AD stigma was assessed using a modified Family Stigma in Alzheimer’s
Disease Scale (FS-ADS), a validated scale that measures AD stigma
across a range of cognitive, emotional, and behavioral attributions.27
These attributions align with Link and Phelan’s theory of stigma,28 the
modified labeling theory,29 and the social-cognitive model of stigma.30
Items on the original assessment were adapted for relevance to the
vignettes.31
The modified FS-ADS is comprised of 41 items that load onto seven
empirically-derived domains. Items asked the extent to which the par-
ticipant believed that the person described in the vignette: (a) should
worry about encountering discrimination by insurance companies or
employers and being excluded from voting or medical decision mak-
ing (Structural Discrimination); (b) would be expected to have certain
symptoms like speaking repetitively or not remembering recent events
(Negative Severity Attributions); (c) should be expected to have poor
hygiene, neglected self-care, and appear in other ways that provoke
negative judgments (Negative Aesthetic Attributions); (d) evoked feel-
ings of disgust or repulsion (Antipathy); (e) would evoke feelings of
concern, compassion, or willingness to help from others (Support); (f)
would evoke feelings of sympathy, sadness, or pity from others (Pity);

1530 STITES ET AL.
TAB L E 2 Comparisons of Alzheimer’s stigma between Black and White participants reacting to a patient at a memory center visit (N=2506).
FS-ADS domain Estimate name Bivariate model Full model
Structural discrimination OR (95%CI) 1.40b(1.22 to 1.61) 1.43b(1.22 to 1.67)
p-value <0.001 <0.001
Negative severity attributions OR (95%CI) 2.09b(1.82 to 2.41) 2.00a(1.70 to 2.33)
p-value <0.001 01
Negative aesthetic attributions OR (95%CI) 1.92 (1.64 to 2.22) 1.81 (1.51 to 2.16)
p-value 88 62
Antipathy OR (95%CI) 1.56b(1.36 to 1.80) 1.39 (1.19 to 1.62)
p-value <0.001 14
Support OR (95%CI) 1.74a(1.51 to 2.00) 1.55b(1.32 to 1.81)
p-value 007 001
Pity OR (95%CI) 1.73b(1.50 to 1.99) 1.48b(1.35 to 1.85)
p-value <0.001 <0.001
Social Distance OR (95%CI) 1.31b(1.13 to 1.50) 1.25 (1.06 to 1.46)
p-value <0.001 06
Note: Full model controls for covariates of participant age, gender, Hispanic ethnicity, and educational attainment.
Abbreviations: 95%CI, normal 95% confidence interval; FS-ADS, Family Stigma in Alzheimer’s Disease Scale; OR, odds ratio from ordered logistic regression.
ap<0.01.
bp<0.001.
and (g) would be ignored or have social relationships limited by others
(Social Distance). We framed items on domains that pertained to nega-
tive or unpleasant attributes to be about the actions of “others”in order
to minimize social desirability bias.32,33 Responses were recorded on
a 5-point Likert scale arranged on the screen horizontally from left
to right, and analyzed by domain using established methods,31 with
higher scores indicating stronger endorsement.
AD diagnosis confidence was evaluated using an instrument from
Baumann et al..34 We modified the diagnostic approaches for relevance
in diagnosing AD as follows. Participants rated the level of confidence
they would have in an AD diagnosis based on a medical evaluation that
included: (a) only a clinical history interview and physical exam; (b) a
clinical history interview, physical exam, and memory tests; (c)a clinical
history interview, physical exam, memory tests, and blood tests; or (d)a
clinical history interview, physical exam,memory tests, blood tests, and
a brain scan. Participants rated their confidence for each evaluation on
a scale of 0 to 100, with higher scores indicating more confidence.
The Institutional Review Board (IRB) of the {masked for
review} reviewed all procedures involving human subjects for the
“Health Beliefs Study” (#828348).
2.5 Statistical approach
A power calculation using data on the smallest between-group mean
difference on the FS-ADS and a Type I error rate (alpha) of .05
(two-sided) showed that a sample of 1200 participants would be suf-
ficient to maintain at least 95% statistical power in estimations of
effects.35 Means and proportions were used to characterize the sam-
ple. Normal 95% confidence intervals (95% CI) and Fisher’s exact
test of proportions were used to compare the sample to the general
population.36 ANOVA, Kruskal Wallis, linear regression, and ordered
logistic regression (OLR) were used to test for between-group differ-
ences on FS-ADS domains and Baumann diagnostic confidence items
and produced similar results. Common odds ratio (OR) from OLR were
used to report association sizes in analysis of the FS-ADS. Mean dif-
ferences from linear regression were used to report association sizes
in analyses of diagnosis confidence. Bivariate models tested for dif-
ferences between race groups and between biomarker test results
within each race group. Multivariable models statistically control for
participant age, gender,Hispanic ethnicity, and educational attainment,
which were unbalanced between the race groups. All analyses were
balanced for features that varied across vignettes in order to counter-
balance effects that could be attributed to them. Statistical tests were
two-sided. Pvalues <0.05 were considered statistically significant.
Analyses were performed in Stata 16 (College Station, TX).
3RESULTS
3.1 Participant characteristics
The sample of 1055 self-identified Black and 1451 self-identified
White adults was similar to each other on most assessed characteris-
tics but differed from their respective U.S. general population (Table 1).
Black participants were, on average, more likelyto be women, Hispanic,
and have higher educational attainment than the general Black adult
population (all P<0.05). White participants were on average older,
less likely to identify with multiple race categories, and more likely

STITES ET AL.1531
FIGURE 1 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.
to identify as Hispanic than the general White adult population (all
P<0.05).
3.2 Differences in FS-ADS scores between Black
and White participants toward a patient at a memory
center
In bivariate comparisons, Black participants endorsed higher FS-ADS
scores than White participants on six of the seven domains: Struc-
tural Discrimination, Negative Severity Attributions, Antipathy, Support,
Pity,andSocial Distance (Table 2). In multivariable models that statis-
tically adjusted for group differences in age, gender, Hispanic ethnicity,
and educational attainment, Black participants endorsed higher scores
on Structural Discrimination (OR, 1.43, 95%CI 1.22 to 1.67), Negative
Severity Attributions (OR, 2.00, 95%CI 1.70 to 2.33), Support (OR, 1.55,
95%CI 1.32 to 1.81), and Pity (OR, 1.48, 95%CI 1.35 to 1.85). Forest
plots shown in Figure 1summarize the results of the bivariate and
multivariable comparisons.
3.3 Differences in FS-ADS scores between Black
and White participants in the positive versus
negative ad brain scan condition
In bivariate comparisons among Black participants, a positive brain
scan result, compared to a negative result, caused higher FS-ADS

1532 STITES ET AL.
TAB L E 3 Comparisons of Alzheimer’s stigma reactions between Black and White participants in the positive versus negative brain scan test
result (N=2506).
Black White Full model
FS-ADS domain
Estimate
name
Positive vs. negative
biomarker
Positive vs.
negative
biomarker
Race group X
biomarker result
term
Structural discrimination OR (95% CI) 2.62b(2.19 to 3.16) 2.12b(1.72 to 2.64) 1.17 (.87 to 1.57)
p-value <0.001 <0.001 29
Negative severity
attributions OR (95% CI) 1.52b(1.27 to 1.82) 1.28a(1.04 to 1.58) 1.06 (.79 to 1.43)
p-value <0.001 02 67
Negative aesthetic attributions OR (95% CI) 1.02 (.83 to 1.26) 1.06 (.84 to 1.33) 93 (.66 to 1.30)
p-value 84 64 67
Antipathy OR (95% CI) 1.55b(1.29 to 1.86) 1.15 (.93 to 1.43) 1.28 (.95 to 1.72)
p-value <0.001 18 10
Support OR (95% CI) 1.28b(1.07 to 1.54) 1.46b(1.18 to 1.80) 82 (.61 to 1.10)
p-value 006 <0.001 18
Pity OR (95%CI) 2.04b(1.70 to 2.44) 1.78b(1.44 to 2.20) 1.04 (.77 to 1.39)
p-value <0.001 <0.001 81
Social distance OR (95% CI) 1.57b(1.30 to 1.89) 1.21 (.97 to 1.49) 1.28 (.94 to 1.72)
p-value <0.001 09 11
Note: Full model controls for covariates of participant age, gender, Hispanic ethnicity, and educational attainment.
Abbreviations: 95%CI, normal 95% confidence interval; FS-ADS, Family Stigma in Alzheimer’s Disease Scale; OR, odds ratio from ordered logistic regression.
ap<0.05.
bp<0.001.
scores on six domains: Structural Discrimination (OR, 2.62, 95%CI 2.19
to 3.16), Negative Severity Attributions (OR, 1.52, 95%CI 1.27 to 1.82),
Antipathy (OR, 1.55, 95%CI 1.29 to 1.86), Support (OR, 1.28, 95%CI 1.07
to 1.54), Pity (OR, 2.04, 95%CI 1.70 to 2.44), and Social Distance (OR,
1.57, 95%CI 1.30 to 1.89) than a negative test (Table 3). Among White
participants, a positive brain scan result, compared to a negative result,
caused higher FS-ADS scores on four domains: Structural Discrimination
(OR, 2.12, 95%CI 1.72 to 2.64), Negative Severity Attributions (OR, 1.28,
95%CI 1.04 to 1.58), Support (OR, 1.46, 95%CI 1.18 to 1.80), and Pity
(OR, 1.78, 95%CI 1.44 to 2.20).
In multivariable analyses, no differences were observed in FS-ADS
scores between the positive and negative brain scan test result con-
ditions. These models controlled for group differences in age, gender,
Hispanic ethnicity, and educational attainment.
3.4 Participant ratings of confidence in an AD
diagnosis by evaluation type
Black participants’ confidence in an AD diagnosis that was based on
a clinical interview and physical examination was an average rating of
46.8 points (95%CI 45.0 to 48.6), which was higher than the respective
rating of White participants [39.2 points (95%CI 37.7 to 40.7), Table 4].
Black participants’ confidence in an AD diagnosis that was based on
memory tests in addition to a clinical interview and physical examina-
tion was on average rating of 53.6 points (95%CI 51.9 to 55.3), which
was also higher than the respective rating for White participants [47.7
points (95%CI 46.3 to 49.1)].
Black participants’ confidence in an AD diagnosis that was based on
blood tests in addition to a clinical interview, physical examination, and
memory tests was 60.2 points (95%CI 58.6 to 61.8), which was statisti-
cally similar to the respective rating of White participants [57.2 points
(95%CI 55.9 to 58.6)]. Black participants’ confidence in an AD diagnosis
that was based on a brain scan in addition to the four other assess-
ments was 72.2 points (95%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)]. Histograms of participant ratings of AD diagnosis confidence
the evaluations that showed the largest and smallest between-group
differences, respectively, are shown in Figure 2. A line graph of mean
confidence ratings by group and evaluation type is shown in Figure 3.
4DISCUSSION
Because there are known racial disparities in AD, we conducted a study
in a sample of self-identified Black (n=1055) and White (n=1451)
adults. We compared the groups’ AD stigma reactions to a patient
at a memory center visit and randomized conditions defined by the
patient’s brain scan result. We also examined how a participant’s con-
fidence in an AD diagnosis was affected by use of a brain scan in an

STITES ET AL.1533
TAB L E 4 Participant ratings of confidence in an Alzheimer’s disease diagnosis by evaluation type.
Evaluation type
Black participants
(n=1135)
mean (95%CI)
White participants
(n=1493)
mean (95%CI)
Full model
mean difference
(95%CI), p-value
Clinical history interview and physical exam
only
46.8 (45.0 to 48.6) 39.2 (37.7 to 40.7) 5.6 (3.1 to 8.2), <0.001
Clinical history interview and physical exam and
memory tests
53.6 (51.9 to 55.3) 47.7 (46.3 to 49.1) 4.3 (2.0 to 6.7), <0.001
Clinical history interview and physical exam,
memory tests, and blood tests
60.2 (58.6 to 61.8) 57.2 (55.9 to 58.6) 1.2 (−1.1 to 3.5), .32
Clinical history interview and physical exam,
memory tests, and blood tests, and brain scan
72.2 (70.4 to 73.5) 78.1 (77.0 to 79.3) −6.3 (−8.4 to −4.2), <0.001
Note: Participants were asked to rate their confidence from 0 to 100. Higher values indicate more confidence. Fullmodel controls for covariates of participant
age, gender, Hispanic ethnicity, and educational attainment. “How confident would be with your medical evaluation (that is, how the doctor determined what
is wrong with you) if the doctor told you that you had a diagnosis of Alzheimer’s disease based on a [each ending]?”
Abbreviation: 95%CI, normal 95% confidence interval
evaluation. We discuss results of each of our three analyses in this sec-
tion in order to inform efforts to promote racially equitable access to
early diagnosis.
First, AD stigma may be a larger barrier for Black adults in accessing
memory center care than for White adults. We found support for our
hypothesis that Black participants would have worse AD stigma reac-
tions than White participants to a new patient visit at a memory center.
In multivariable analyses, Black participants had higher scores on four
of seven FS-ADS domains. These analyses were balanced for biomarker
result, severity, and treatment availability and statistically adjusted for
group differences in age, gender, Hispanic ethnicity, and educational
attainment. The findings suggest that efforts to advance racial equity
in AD care may benefit from focusing on destigmatizing memory cen-
ter care as a key point of access. The findings, consistent with a prior
study, also suggest that AD stigma varies in type and intensity across
population subgroups.35
The largest difference between the race groups was for Negative
Severity Attributions; Black participants were twice as likely as White
participants to attribute greater severity of symptoms to the patient
in the vignette (OR, 2.00, 95%CI 1.70 to 2.33). This finding may reflect
Black families being more likely to care for family members at home,
rather use institutional care.37,38 Because of differences in caregiving,
they may generally have more experience with individuals who are liv-
ing with more severe disease compared to their White counterparts.
These experiences may lead individuals to associate AD with more
severe symptoms. This may contribute to delays in recognizing early
symptoms that are less familiar, and, in turn, delay seeking out early
diagnosis. In AD, early identification is essential to avoiding some of the
most severe consequences of the disease. Population-level interven-
tions that focus on describing early symptoms and the benefits of early
diagnosis may help mitigate negative consequences of the differences
in AD stigma between the two race groups.
We also observed a notable difference in structural discrimination:
Black participants reported greater worries about structural discrimi-
nation than White participants. This finding may be the consequence of
historical injustices or contemporary experiences of racism and dispar-
ities. Whether injustices occur within or outside memory centers, the
artifacts they leave, including worries about recurrent mistreatment,
may need to be addressed in memory centers to ensure the pursuit of
equity in access and delivery of care.
Second, both race groups reported similar levels of AD stigma due
to a positive versus negative brain scan result. We made no formal
hypothesis about positive versus negative AD biomarker results. In
bivariate comparisons, Black participants showed statistically signifi-
cant differences in Antipathy (OR, 1.55, 95%CI 1.29 to 1.86) and Social
Distance (OR, 1.57, 95%CI 1.30 to 1.89) in response to a positive versus
negative biomarker result, whereas White participants did not. These
differences observed in the bivariate models were not statistically sig-
nificant in the multivariable models (discussed in more detail in the next
paragraph), which suggests these observed differences may be driven
by other factors, such as age and gender, that were correlated with
self-reported race and, potentially, also correlated with disparities in
healthcare access.
Patients seeking care at a memory center may fundamentally dif-
fer from those within general medical practices or community health
clinics. Thus, future studies that investigate how the reactions to a
patient seeking AD diagnosis and care vary based on characteristics
of the setting may be informative. Such investigations could help iden-
tify associations between healthcare disparities and AD stigma, which
could in turn aid in guiding efforts aimed at increasing equitable access
to diagnosis and care.
In multivariable models that controlled for group differences in age,
gender, Hispanic ethnicity, and educational attainment, we examined
whether there any aspects of AD stigma – as defined by FS-ADS domain
– that were differentially affected by a positive versus negative AD
biomarker result between the two race groups. We found no statisti-
cally significant differences. A cautiously optimistic interpretation of
this finding is that, while a positive versus negative AD biomarkerresult
may cause more AD stigma, this stigma appears to be similar between
the race groups. This should be closely monitored as AD diagnosis is
made more accessible to broader ranges of sociodemographic groups.
In addition, our finding suggests that prioritizing resources to address

1534 STITES ET AL.
FIGURE 2 Distribution of confidence ratings in an Alzheimer’s diagnosis in White and Black participants (N=2492). Vertical line marks
distribution median. (A) Clinical history interview and physical exam and memory tests. (B) Clinical history interview and physical exam, memory
tests, and blood tests.
aspects of AD stigma that impede access to memory centers, rather
than AD biomarkers specifically, may show relatively greater gains in
creating racial equity in AD diagnosis and treatment.
Third, differences in confidence in an AD diagnosis varied with the
composition of assessments in the medical evaluation. We discovered
that Black participants had higher confidence in an AD diagnosis com-
pared to White participants for the first two evaluation types [i.e., (1)
clinical history interview and physical exam only and (2) clinical his-
tory interview, physical exam and memory tests] but not the second
two [i.e., (3) clinical history interview and physical exam, memory tests,
and blood tests, and (4) clinical history interview and physical exam,
memory tests, and blood tests, and brain scan]. The pattern of find-
ings warrants further study; White participants’ confidence may be
more influenced by both the number of tests in an evaluation and
the inclusion of biomarker tests (i.e., blood tests and brain scans).
Thus, advances in these types of diagnostic methods will not be suf-
ficient to undo racial differences in public skepticism in AD diagnosis,
which may be rooted in prior experiences of misdiagnosis.24 In fact, an

STITES ET AL.1535
FIGURE 3 Participant confidence ratings in an Alzheimer’s
diagnosis by evaluation type. Participants were asked to rate their
confidence from 0 to 100. Higher values indicate more confidence.
“How confident would be with your medical evaluation (that is, how
the doctor determined what is wrong with you) if the doctor told you
that you had a diagnosis of Alzheimer’s disease based on a [each
ending]?”. (A) Clinical history interview and physical exam only. (B)
Clinical history interview and physical exam and memory tests. (C)
Clinical history interview and physical exam, memory tests, and blood
tests. (D) Clinical history interview and physical exam, memory tests,
and blood tests, and brain scan.
alternative explanation to this pattern of results is that Black par-
ticipants may have less confidence in examinations that incorporate
biomarkers – testing via blood and/orimaging – due to harmful rhetoric
surrounding biological differences, as seen, for example, in eugenics.39
An emphasis on biological definitions of AD may not be comparably
embraced by communities of color as compared to white communities.
The reliance on these methods, particularly in the absence of efforts
to mitigate racial inequities, may exacerbate healthcare disparities.
Studies are needed to understand sociocultural differences in associ-
ations among diagnosis confidence and both perceptions of diagnostic
accuracy, and usefulness of a diagnosis in planning care and treatment.
While the overall study response rate was 53%, it differed between
the two race groups; the response rate among Black participants was
about half (34%) that of White participants (63%). Moreover, White
participants were more than twice as likely as Black participants to
fail the screener (12.6% vs. 5.1%). However, Black participants were
four times more likely to discontinue (15.3% vs. 3.8%). The pattern sug-
gests that Black participants were more likely to self-select out of the
study. Those who participated were more educated than the general
public (see Table 1). Unfortunately, we do not have data to compare
people who did and did not respond to our study. Among those who did
respond, language differences may have contributed to some of the dif-
ference in why some individuals ended the study early.17 Nonetheless,
even among this self-selected, well-educated group of Black partici-
pants, AD stigma – a known barrier to AD care40 – was greater than
what we observed in the White participant group. This finding under-
scores the pressing need to actively address barriers and promote
equity in access to memory centers and other care settings.
Our study had limitations. Our sample was not representative of
the U.S. older adult population. Discrepancies between the participant
sample and U.S. population may limit the generalizability of the study
results. Future studies with samples representative of more social
strata would be useful. In addition, studies that evaluate other aspects
of AD diagnosis and care, such as expectations for treatment and quali-
ties of care partners who co-participate with patients in memory center
appointments, would be useful.
Our study used “positive” and “negative” to denote the result of
the brain scan. We used this wording as it was consistent with FDA’s
terms but other descriptions are also used in the field, such as “ele-
vated” and “not elevated”. Future studies that investigate the influence
of the choice in wording may be useful. It could be informative to know
whether this wording affects individuals’ interpretations or reactions
to the result.
5CONCLUSION
A new patient visit at a memory center caused greater stigma for
Black participants compared to their White counterparts. This finding
was coupled with Black and White participants demonstrating simi-
lar reactions to a brain scan result but Black participants expressing
lower confidence in an AD diagnosis informed by a brain scan. Our
findings suggest equitable access to early AD diagnosis and treat-
ment will require interventions that address AD stigma associated with
access to memory center care. Public outreach and education on the
use and value of AD biomarkers may be informative for guiding these
efforts.
AUTHOR CONTRIBUTIONS
Shana D. Stites wrote the initial draft of the article.All authors con-
tributed to conceptualizing and writing the article.
ACKNOWLEDGMENTS
Support. This work was supported by grants from the University
of Pennsylvania Alzheimer’s Disease Research Center (NIA P30 AG
072979), and the Alzheimer’s Foundation of America (No grant #). This
publication is the result of work conducted by the CDC Healthy Brain
Research Network. The CDC Healthy Brain Research Network is a Pre-
vention Research Centers program funded by the CDC Healthy Aging
Program-Healthy Brain Initiative. Efforts were supported in part by
cooperative agreement U48 DP - 005053. The views of this publication
are those of the authors and do not necessarily represent the official
views of the Centers for Disease Control and Prevention. Dr Stites
was supported by the Alzheimer’s Association (AARF-17-528934) and
the National Institute on Aging (1K23AG065442, 1K23AG065442-
03S1). Dr Largent was supported by the National Institute on Aging
(K01AG064123) and the Greenwall Faculty Scholars Program (No
grant #).
CONFLICT OF INTEREST STATEMENT
The authors have no conflicts to disclose. Author disclosures are
available in the supporting information.

1536 STITES ET AL.
HUMAN PARTICIPANT PROTECTION
The Institutional Review Board of the University of Pennsylvania
approved all procedures involving human subjects.
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SUPPORTING INFORMATION
Additional supporting information can be found online in the Support-
ing Information section at the end of this article.
How to cite this article: Stites SD, Largent EA, Schumann R,
Harkins K, Sankar P, Krieger A. How reactions to a brain scan
result differ for adults based on self-identified Black and White
race. Alzheimer’s Dement. 2024;20:1527–1537.
https://doi.org/10.1002/alz.13558