Abstract
Objectives
Research often focuses on persons who are or have been caregivers to a person with dementia. Little is known about stigma reactions in persons who expect to care for a person with Alzheimer’s disease (AD). Understanding these beliefs may help guide clinical discussions with family members of persons with AD, particularly those diagnosed in the early stages.
Methods
A sample of 3,527 adults was randomized to read a vignette describing a fictional person with either a positive or a negative AD biomarker test result. Bivariate and multivariable analyses examined associations between AD caregiver status (expected and experienced) and responses on a modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS).
Results
About 31% (n = 1,090) of participants expected to be a caregiver for a person with AD, and most (63%) had previously been a caregiver. Controlling for differences in caregiving experience and other potential confounders, participants expecting (vs. not) to be AD caregivers reported higher willingness to support, more pity, and fewer negative aesthetic attributions than participants with (vs. without) AD caregiving experience (all p < .05).
Discussion
Caregiving experience is a strong predictor of a person’s expectations of becoming one in the future, which runs counter to observed caregiving patterns, suggesting that for most people, becoming a caregiver is unexpected. Helping individuals set more accurate expectations for future caregiving roles is essential to support planning and preparation. Specific findings may inform the content of support and education programs that could accompany disclosure of AD biomarkers and early diagnosis.
Keywords: Biomarkers, Disclosure, Caregivers, Expectations
Introduction
Over 11 million people in the United States currently provide unpaid care for someone with Alzheimer’s disease (AD) dementia or another dementia (Alzheimer’s Association, 2023). Relatives of persons with dementia or of those with a heightened risk for developing dementia may anticipate becoming an AD caregiver in the future (Largent & Karlawish, 2019). Understanding AD stigma—prejudicial attitudes, stereotypes, discriminatory behaviors (Stites, Rubright et al., 2018)—among persons who expect to be caregivers of persons with AD is essential for improving outcomes for caregivers and those for whom they care, and for aiding the translation of research advances in early diagnosis and treatment of AD into routine clinical care.
Advances in biomarkers are moving AD diagnosis and treatment toward a tertiary or even a secondary prevention model of AD (Dubois et al., 2016; Jack et al., 2018). This may have the unintended consequence of moving the caregiver role earlier in the disease process or, potentially, to a role of “watchful waiting.” If people anticipate taking on this role, they may be able to plan for it together with the person for whom they expect to care, which could have benefits for both of them. For example, one of the most consequential problems encountered by caregivers of people with dementia is not knowing the wishes and preferences of that person (Dening et al., 2016; Hirschman et al., 2006; Poole et al., 2018). This is a problem that can be addressed through early planning.
How potential caregivers think about a person with AD may impact their expectations, decision-making, and planning for the role. Expectations, such as assuming oneself to be a future champion of a loved one’s safety and well-being, are shaped by beliefs and emotions that can motivate a person to action. In contrast, AD stigma, which is defined by pejorative content, refers to beliefs, emotions, and behaviors that can stymie a person from doing social, psychological, or physical tasks related to AD (Corrigan, 2000; Werner et al., 2011).
Stigma is a social process that occurs in three ways. Caregivers may have witnessed “public stigma”—that is, endorsement of prejudice and discrimination toward those with dementia. Current or former AD caregivers may also have experienced “spillover stigma,” also called “stigma by association” (Garand et al., 2009; Werner et al., 2011, 2012), which occurs when a person is stigmatized by virtue of their association with a stigmatized group (Mukadam & Livingston, 2012). Spillover stigma can have deleterious effects on how caregivers feel about themselves and may distort their views of and relationship with the person with dementia in their care (Behuniak, 2011). In fact, when pejorative public beliefs and attitudes associated with stigma are incorporated into their self-concept, caregivers can experience internalized stigma, also known as self-stigma or felt stigma, which can lead to shame, self-doubt, and expectations of discrimination.
Understanding differences in stigma reactions based on expectations and experience of being AD caregivers may clarify how advances in early diagnosis of AD are impacting their social and psychological outcomes. Caregivers, including soon-to-be caregivers, have an essential role in often initiating and accompanying persons with dementia through the diagnosis and treatment process. Moreover, the AD caregiver role is a deeply human experience that is both rewarding and satisfying (Lloyd et al., 2016; Quinn et al., 2024; Yu et al., 2018) while also immensely socially and structurally challenging (Chiao et al., 2015; Etters et al., 2008; Goto et al., 2023; Liu et al., 2022). It is necessary to understand caregivers’ planning and entry into this essential role.
AD stigma is a known barrier to early diagnosis (Corner & Bond, 2004; Werner & Giveon, 2008). Studying reactions to a new patient visit at a memory center may offer insights into the perceptions of individuals who anticipate becoming an AD caregiver in the future. Memory centers, also known as memory clinics, offer expertise in the diagnosis and care of AD and other types of dementia (Mehrani & Sachdev, 2022). A memory center is expected to reflect the height of current knowledge and expertise in the diagnosis of AD and related dementias. Testing at memory centers, including brain scans and blood tests, can detect AD-specific pathologies and hold potential to radically improve the accuracy and timeliness of diagnosis. Brain scans, for example, can measure amyloid and tau burden (Betthauser et al., 2020; Jack et al., 2010). A positive brain scan may offer a salient signal to individuals who expect to be an AD caregiver that their future as an AD caregiver has become more certain. Thus, understanding whether expectant caregivers react more strongly to a positive brain scan result would offer useful information to guide conversations with patients and their support persons about brain scan and other AD biomarker results.
Contact with a person with dementia does not seem to affect AD stigma (Stites et al., 2025), however, persons who are or have been caregivers of a person with AD reported higher AD stigma across all seven assessed domains than individuals without this experience (Stites et al., 2021). This study focuses on four groups: those who expect to be AD caregivers and have experience as a current or former AD caregiver, those who expect to be AD caregivers who do not (yet) have experience as a current or former AD caregiver, those who do not expect to be AD caregivers and do not have experience as a current or former AD caregiver, and those who do not expect to be AD caregivers and have experience as a current or former AD caregiver.
Knowing what, if any, patterns in AD stigma exist among these study groups may help guide efforts to address AD stigma and improve outcomes for AD caregivers. The 2024 Care Summit identified a lack of understanding of the heterogeneity in caregiver characteristics and other aspects of dementia as a major research gap (Sferrazza & Li, 2020). The results of this study can begin to fill that gap. Moreover, understanding expectations around future caregiving can inform efforts that could ground people’s views of the future in ways that benefit planning and preparation.
The goal of this study was to compare the stigma reactions of persons based on expectations and experience of being an AD caregiver. In a sample of 3,527 adults from the general adult population, we identified a group of persons who reported expecting to become AD caregivers in the future. We identified several subgroups: individuals who were or had been caregivers either for persons with AD dementia (only), conditions other than AD dementia, a mix of both, or had not had any caregiving experience. All participants read a vignette describing a fictional person with a positive or negative AD biomarker test result and answered questionnaires. We compare study groups based on current/prior and expected AD caregiver status and examine reactions after reading a vignette about a patient learning a biomarker test result. This information may help guide advances in early diagnosis into routine care. We discuss the possible utility of the information for clinicians in anticipating the gaps and needs of family members who are supporting a loved one who receives an AD diagnosis.
Methods
Study design
This is a vignette-based experiment. The study flow is shown in Stites, Gill, et al. (2022). Data collection occurred between June 11 and July 3, 2019.
Setting and participant eligibility
The Institutional Review Board at the University of Pennsylvania reviewed all procedures involving human subjects for the “Health Beliefs Study” (#828348).
Adults able to read English were invited at random from a large research panel maintained by Qualtrics. The response rate was 53%. The completion rate was 91.3%. Data from participants in this sample have been analyzed previously (Stites, Gill, et al., 2022; Stites, Largent, et al., 2024; Stites, Lee, et al., 2024; Stites, Midgett, Largent, Harkins, Schumann, et al., 2024). The sample for this study, comprised 3,527 participants, is a combination of individuals who were either in a sample demographically similar to the U.S. adult population (n = 1,817) or from oversamples of Black adults (n = 855) and older adults (n = 855).
Those who consented to participate in the study were asked to provide demographic data. These data were used to ensure population-based sampling quotas were met for race, ethnicity, gender, and educational attainment. If the demographic quota was already full, the individual was not eligible to proceed. If the participant’s demographic profile was associated with a not-yet-filled sampling frame, the participant was asked to read a paragraph about AD biomarker testing and then answer a fact-based comprehension question (see online Supplementary Material A). Participants were given two opportunities to answer correctly. Participants who failed the second attempt (n = 286) were excluded to ensure a minimum level of understanding of biomarker results among participants. As reported previously, men and women were similarly likely to fail the screener (Stites, Midgett, Largent, Harkins, Krieger, et al., 2025), relatively younger participants were slightly more likely (3%) to fail the screener (Stites, Midgett, Largent, Harkins, Krieger, et al., 2025), and Black participants were more likely to fail the screener than white participants (Stites, Largent, et al., 2024).
Caregiving expectations
Expected AD caregiver status was determined by asking participants, “Do you expect that in the future you may be a caregiver for a person with Alzheimer’s disease?” (Yes or No). If a participant was a current AD caregiver, they were asked if they expected to also be a caregiver for another person with AD.
Current/past caregiver status
Caregiver status was determined by cross-tabulation of two questions: (1) “Are you or have you ever been a caregiver for a person with AD? This includes a formal or informal role in providing care to a relative or friend 18 years or older to help them take care of themselves. Caregiving may include help with the physical and emotional well-being of a person who was diagnosed with or believed to have Alzheimer’s disease.” (2) “Are you or have you ever been a caregiver for anyone? This includes a formal or informal role providing care to a relative or friend 18 years or older to help them take care of themselves. Caregiving may include help with personal needs or household chores. It might be managing a person’s finances, arranging for outside services, or visiting regularly to see how they are doing. This person need not live with you.”
Caregiver status was classified by whether participants were: a caregiver only for one or more adults with AD (AD caregiver only), a caregiver only for one or more adults with a condition other than AD (non-AD caregiver only), a caregiver for one or more adults with AD and other adults with a condition other than AD (caregiver mixed type), or not a caregiver.
Vignettes
Simple randomization was used to assign participants to a vignette. Vignette samples are presented in online Supplementary Material B.
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 “memory testing.” No further information (i.e., interpretation of answers to the questions or results of the memory testing) was provided in the vignette. The race of the patient in the vignette was not specified. The effects of patient age at three levels (60, 70, or 80 years old) and gender at two levels (man or woman) are held constant in our analyses as the number of vignettes was balanced to control for effects that could be attributed to these characteristics.
Brain scan test result
The vignette described the patient undergoing a “brain scan test” for an AD biomarker to determine whether the patient’s memory problems were caused by AD. Half of the participants read a vignette in which the patient learned a positive result, and half read a vignette in which the patient 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 labeling for positron emission tomography (PET) biomarker tests that measure brain amyloid.
Other clinical features
The patient’s symptoms were described as consistent with the Clinical Dementia Rating (CDR) Scale, a validated informant and patient interview assessing the participant’s cognition and functioning, with scores of 0 (none), 1 (mild), or 2 (moderate) (Hughes et al., 1982). The CDR covers six domains: memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care. The effects of clinical symptom severity of the patient are held constant in our analyses as the number of vignettes in each condition was balanced.
In each vignette, the doctor explained that a disease-modifying treatment for AD was or was not available. The treatment was described as one that “could slow the progression of the disease.” The effects of treatment availability are held constant in our analyses as the number of vignettes in each condition was balanced.
Measures
AD stigma was assessed using a modified version of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS) (Stites, Gill, et al., 2022), a validated tool measuring stigma in Alzheimer’s across cognitive, emotional, and behavioral dimensions (Werner et al., 2011). These dimensions align with Link and Phelan’s theory of stigma and related models. The modified FS-ADS includes 41 items grouped into seven domains (Stites, Gill, et al., 2022). Participants evaluated the extent to which they believed the individual in the vignette might: (a) face discrimination by insurance companies or employers (Structural Discrimination); (b) display certain symptoms (Negative Severity Attributions); (c) exhibit poor hygiene (Negative Aesthetic Attributions); (d) elicit disgust (Antipathy); (e) inspire compassion (Support); (f) provoke pity (Pity); and (g) experience social isolation (Social Distance).
To reduce social desirability bias, items related to negative attributes focused on the actions of “others” (Bazinger & Kühberger, 2012; Fisher, 1993). Responses were recorded on a 5-point Likert scale and analyzed by domain, with higher scores indicating stronger endorsement. The internal consistency of the adapted scale was high (Cronbach’s alpha = 0.91), with all individual domains above 0.80, except for the Pity scale, which scored 0.77 (Stites, Lee, et al., 2024).
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 0.05 (two-sided) showed that a sample of 3,500 participants would be sufficient to maintain at least 95% statistical power in estimations of effects (Stites, Johnson, et al., 2018). Means, proportions, and pairwise correlations were used to characterize the sample. Bivariate models tested for differences in FS-ADS scores between participants who did and did not expect to be a caregiver for a person with AD. Multivariable models included participants’ history of caregiving experiences as a covariate to determine whether differences in the bivariate models persisted, controlling for caregiver experience, and to explore whether patterns in FS-ADS scores could be identified between expected AD caregivers and exclusively AD caregivers. In interaction analyses, we tested whether the effects of expectations of being an AD caregiver modified how a person responded on the FS-ADS after reading about either a positive or negative AD biomarker result. Because some of the FS-ADS domain scores were non-normally distributed, we used non-parametric methods backed up by parametric statistical tests to ensure the robustness of our results. analysis of variance, Kruskal–Wallis, linear regression, and ordered logistic regression (OLR) were used to test for between-group differences on FS-ADS domains and produced similar results. Common odds ratio (OR) from OLR was used to report association sizes in the analysis of the FS-ADS.
Statistical tests were two-sided. Values of p < .05 were considered statistically significant. Analyses were performed in Stata 16 (College Station, TX).
Results
Sample characteristics
In the sample of 3,527 adults, almost a third of the sample reported that they expected to be a caregiver for a person with AD dementia in the future (30.9%, n = 1,090). Participants who expected to be a caregiver for a person with AD dementia were an average of 44 years old, while participants who expected not to be a caregiver for a person with AD dementia were about 53 years old (Table 1). Those who expected to be AD caregivers were also more likely to be African American and Hispanic or another race (i.e., individuals who identified as Asian, American Indian or Alaskan Native, Native Hawaiian or Pacific Islander, and others). The expectation of being a caregiver in the future did not appear to differ by gender or education level.
Table 1.
Participant characteristics (N = 3,527).
| Participant characteristic | Expected AD caregiver (n = 1,090) | Expects not to be an AD caregiver (n = 2,437) | p |
|---|---|---|---|
| Age (years), mean (SD) | 44.25 (17.9) | 53.35 (18.6) | |
| Female, % (n) | 55.6 (606) | 53.5 (1,305) | |
| Race/ethnicity, % (n) | <.001 | ||
| White | 55.1 (601) | 63.0 (1,536) | |
| African American | 33.5 (365) | 29.5 (719) | |
| Some other race | 11.4 (124)a | 7.47 (182) | |
| Hispanic | 14.7 (160) | 9.73 (237) | |
| Education, % (n) | .017 | ||
| High school/GED or less | 31.0 (338) | 35.9 (875) | |
| Some college or 2-year degree | 34.8 (379) | 34.4 (838) | |
| 4-Year college degree or beyond | 34.2 (373) | 29.7 (724) | |
| Caregiver status, % (n) | <.001 | ||
| AD caregiver (only)b | 3.9 (43) | 1.5 (37) | |
| Non-AD caregiver (only)c | 25.5 (278) | 26.1 (635) | |
| Caregiver (mixed)d | 34.0 (371) | 10.7 (260) | |
| Not a caregiver | 36.5 (398) | 61.8 (1,505) |
Note. AD = Alzheimer’s disease; GED = General Educational Development test.
Asian (n = 46), American Indian or Alaskan Native (n = 13), Native Hawaiian or Pacific Islander (n = 2), some other race (n = 22), two or more races (n = 41), of which the largest group identified as both White and Black.
Caregiver for one or more persons with AD.
Caregiver for one or more adults with a condition other than AD.
Caregiver for one or more persons with AD and other adults with a condition other than AD.
Of those who expected to be an AD caregiver, about 4% had previously been a caregiver for a person or persons with AD dementia, which was more than double the percentage in the group who expected not to be an AD caregiver (1.5%). Almost a third of those who expected to be an AD caregiver did not have any prior caregiving experience (36.5%), while most people who expected not to be an AD caregiver in the future had not been a caregiver (61.8%).
Bivariate results: individuals who expect (vs. do not expect) to be an AD caregiver
Participants who expected to be a caregiver for a person with AD dementia reported higher AD stigma on all seven domains of the FS-ADS (Table 2). Individuals who expected to be a caregiver for a person with AD dementia also reported greater worries that the person described in the vignette would encounter structural discrimination (OR = 1.45, 95% CI: 1.28, 1.64), made stronger negative attributions about the person’s symptoms (OR = 1.63, 95% CI: 1.44, 1.84), and stronger negative aesthetic attributions (OR = 1.37, 95% CI: 1.19, 1.58). They also reported stronger expectations of antipathy (OR = 1.52, 95% CI: 1.34, 1.72), support (OR = 1.71, 95% CI: 1.51, 1.94), pity (OR = 1.59, 95% CI: 1.40, 1.80), and that the patient in the vignette would be socially distanced (OR = 1.37, 95% CI: 1.20, 1.55). Figure S1 shows structural discrimination scale scores by caregiver status.
Table 2.
Bivariate analysis of individuals who expect to be a caregiver for a person with Alzheimer’s disease stigma on the FS-ADS (N = 3,527).
| FS-ADS domain |
Expected AD caregiver
a
|
|
|---|---|---|
| OR | (95% CI) | |
| Structural discrimination | 1.45*** | (1.28, 1.64) |
| Negative severity attributions | 1.63*** | (1.44, 1.84) |
| Negative aesthetic attributions | 1.37*** | (1.19, 1.58) |
| Antipathy | 1.52*** | (1.34, 1.72) |
| Support | 1.71*** | (0.51, 1.94) |
| Pity | 1.59*** | (1.40, 1.80) |
| Social distance | 1.37*** | (1.20, 1.55) |
Note. AD = Alzheimer’s disease. FS-ADS = Family Stigma in Alzheimer’s Disease Scale. OR = odds ratio from ordered logistic regression. 95% CI = normal 95% confidence interval.
Reference group defined as those who expect not to be a caregiver for a person with Alzheimer’s disease.
p < .05.
p < .01.
p < .001.
Multivariable results: expected AD caregiver and caregiver history
In multivariable analyses that covaried a participant’s type of experience as a caregiver (AD, not AD, both, or none), expecting to be a caregiver for a person with AD dementia was still associated with higher AD stigma ratings on all seven domains of the FS-ADS (Table 3). These results were consistent with results from the bivariate analyses (Table S1).
Table 3.
Multivariable analyses of individuals who expect to be a caregiver for a person with Alzheimer’s disease and their caregiver history on the FS-ADS (N = 3,527).
| FS-ADS domain | Caregiver statusa |
|||
|---|---|---|---|---|
| Expected AD caregiverb | Non-AD caregiver (only) | AD caregiver (only) | Caregiver (mixed)c | |
|
|
||||
| OR (95% CI) | OR (95% CI) | OR (95% CI) | OR (95% CI) | |
| Structural discrimination |
|
|
|
|
| Negative severity attributions |
|
|
|
|
| Negative aesthetic attributions |
|
|
|
|
| Antipathy |
|
|
|
|
| Support |
|
|
|
|
| Pity |
|
|
|
|
| Social distance |
|
|
|
|
Note. AD = Alzheimer’s disease. FS-ADS = Family Stigma in Alzheimer’s Disease Scale. OR = odds ratio from ordered logistic regression. 95% CI = normal 95% confidence interval.
Reference group not a caregiver.
Reference group defined as those who expect not to be a caregiver for a person with Alzheimer’s disease.
Caregiver for one or more persons with AD and other adults with a condition other than AD.
p < .05.
p < .01.
p < .001.
Participants with experience caring for a person with AD dementia reported higher AD stigma on five of the seven FS-ADS domains compared to participants without any caregiving experience; they expected the person in the vignette would encounter structural discrimination (OR = 1.66, 95% CI: 1.12, 2.46), more severe symptoms (OR = 2.60, 95% CI: 1.73, 3.91), worse negative aesthetic attribution (OR = 3.82, 95% CI: 2.52, 5.81), more antipathy (OR = 2.24, 95% CI: 1.49, 3.36), and more social distance (OR = 2.14, 95% CI: 1.44, 3.18) compared to those without any type of caregiving experience.
The two domains on which they did not show differences from those without any caregiving experience were pity and support (both p > .05). This stands in contrast to participants who expected to be an AD caregiver. Participants who expected to be an AD caregiver versus those who did not reported stronger feelings of pity (OR = 1.65, 95% CI: 1.45, 1.88) and support (OR = 1.74, 95% CI: 1.53, 1.99). Both those who expect to be an AD caregiver and those with AD caregiving experience made stronger negative aesthetic attributions than their respective comparators; however, the magnitude of the effect was smaller for those who did versus did not expect to be AD caregivers (OR = 1.29, 95% CI: 1.11, 1.50 versus OR = 3.82, 95% CI: 2.52, 5.81).
Expectations about social distance appear to be distinct from AD dementia caregiving. Those who expected to be a caregiver for a person with AD dementia reported stronger expectations that a person with AD would be socially distanced than those who did not expect to be an AD caregiver (OR = 1.33, 95% CI: 1.16, 1.51). Those who had been exclusively a caregiver for a person with AD also reported stronger expectations that a person with AD would be socially distanced compared to not having been a caregiver (OR = 2.14, 95% CI: 1.44, 3.18). No statistically significant associations with domains of the FS-ADS were observed between those who expect to be AD caregivers and those who had been caregivers for adults with conditions other than AD dementia or who had experiences caring for persons both with and without AD.
Caregiving for conditions other than AD (e.g., non-AD caregivers) was associated with lower FS-ADS scores on several domains compared to persons without any caregiving experience or non-caregivers. The FS-ADS domains are: negative severity attributions (OR = 0.69, 95% CI: 0.60, 0.79), antipathy (OR = 0.85, 95% CI: 0.74, 0.98), support (OR = 0.78, 95% CI: 0.68, 0.90), and pity (OR = 0.81, 95% CI: 0.71, 0.94).
Multivariable results: positive AD biomarker result, expected AD caregiver, their interactions, and interactions with caregiver history
In an interaction with a positive biomarker result, those who expected to care for a person with AD dementia in the future reported fewer worries about structural discrimination than those who expect not to be a caregiver for a person with AD dementia in the future (DOR = 0.74, 95% CI: 0.57, 0.96; Table 4). Participants with experience as a caregiver for a person with AD dementia reported lower antipathy ratings than those who were not a caregiver (DOR = 0.35, 95% CI: 0.15, 0.80). Non-AD caregivers and all caregivers showed no statistically significant interactions with AD biomarker result (all p < .05). Figure 1 shows the interaction between expected AD caregiver and biomarker test results.
Table 4.
Multivariable analyses of individuals who expect to be a caregiver for a person with Alzheimer’s disease by vignette biomarker test result and caregiver status on the FS-ADS (N = 3,527).
| FS-ADS domain | Caregiver statusa |
Interaction analyses |
|||||||
|---|---|---|---|---|---|---|---|---|---|
| Positive biomarker test resultb | Expected AD caregiverc | Non-AD caregiver (only) | AD caregiver (only) | Caregiver (mixed)d | Positive biomarker vs. Expected AD caregiver | Positive biomarker vs. Non-AD caregiver (only) | Positive biomarker vs. AD caregiver (only) | Positive biomarker vs. caregiver (mixed) | |
|
|
|||||||||
| OR (95% CI) | OR (95% CI) | OR (95% CI) | OR (95% CI) | OR (95% CI) | DOR (95% CI) | DOR (95% CI) | DOR (95% CI) | DOR (95% CI) | |
| Structural discrimination |
|
|
|
|
|
|
|
|
|
| Negative severity attributions |
|
|
|
|
|
|
|
|
|
| Negative aesthetic attributions |
|
|
|
|
|
|
|
|
|
| Antipathy |
|
|
|
|
|
|
|
|
|
| Support |
|
|
|
|
|
|
|
|
|
| Pity |
|
|
|
|
|
|
|
|
|
| Social distance |
|
|
|
|
|
|
|
|
|
Note. AD = Alzheimer’s disease. FS-ADS = Family Stigma in Alzheimer’s Disease Scale. OR = odds ratio from ordered logistic regression. DOR = Difference in odds ratios. 95% CI = normal 95% confidence interval.
Reference group not a caregiver.
Reference group is negative biomarker test result.
Reference group defined as those who expect not to be a caregiver for a person with Alzheimer’s disease.
Caregiver for one or more persons with AD and other adults with a condition other than AD.
p < .05.
p < .01.
p < .001.
Figure 1.
Mean scores on the structural discrimination scale of family stigma in Alzheimer’s disease (FS-ADS) from individuals who expect or do not expect to be a caregiver for a person with Alzheimer’s disease by vignette biomarker test result (N = 3,527).
Note. AD = Alzheimer’s disease. Error bars denote a normal 95% confidence interval.
Discussion
In this study, we compared the stigma reactions of persons who do and do not expect to be an AD caregiver. In our sample of 3,527 adults, we also examined whether these differences remained after controlling for current or former AD caregiver experience and tested whether caregiver experience modified how people reacted to reading about a positive versus a negative biomarker test result. Our findings offer new information to guide advances in early diagnosis into routine care.
About 31% (n = 1,090) of participants reported that they expected to be a caregiver for a person with AD in the future. On average, they were much younger than participants who did not expect to be an AD caregiver, at age 44 versus age 53. They were also more likely to be African American and Hispanic or another race than White. They were more likely to have been a current or former caregiver, including for a person with AD. This pattern of demographic characteristics suggests that they are likely adult children of a person who could develop AD dementia. The finding also has implications for early diagnosis of AD, suggesting adult children may be more often putting themselves metaphorically in the caregiving role. If this imagining of their future selves translates into mental practice in the present (Frank et al., 2014), it might suggest they could have greater psychological readiness to learn their family member has a positive AD biomarker or has been diagnosed with AD dementia. This may translate to better positioning to undertake planning, lifestyle, and behavioral changes that follow a diagnosis (Dalton & Gottlieb, 2003).
The pattern in demographic characteristics is also consistent with the burden of AD dementia. African American and Hispanic participants were more likely to expect to be an AD caregiver than not. They were also more likely to have been a caregiver before. This is consistent with the understanding that African American and Hispanic adults experience a higher burden of AD, including more risk factors and symptoms, (Lennon et al., 2022; Lines & Wiener, 2014) and a younger age of symptom onset (Chen & Panegyres, 2016). This finding may suggest that people inform their expectations for future caregiving based on prior personal experiences or common community experiences.
Our study findings also suggest that people may be setting their expectations about their potential role as a future caregiver based on direct or indirect (e.g., familial, community) prior experiences. This is in contrast to a person setting their expectations based on future goals or circumstances. Notably, most family caregivers (82%) have ever only cared for one person. In other words, a small minority of people who have been caregivers may care for a second (15%) or third (3%) person with AD (Family Caregiver Alliance, 2016). In other words, most people who become caregivers (82%) will not have had a history of caregiving.
Thus, in this study, the expectation of being a future caregiver is not necessarily a reliable indicator for becoming one. However, helping individuals set realistic expectations for future caregiving needs is essential to support planning and preparation. Advance preparation for being a caregiver could be helpful. In addition to helping ensure caregivers know the wishes and preferences of their loved ones with dementia, advance planning may have a role in improving social and psychological outcomes for new caregivers and their loved ones. Caregivers may be able to transition into the role more easily, with less psychological distress, and greater continuity both in terms of identity and daily life.
About a third of those who expected to be an AD caregiver in the future had not yet been a caregiver. Studies are needed to understand the factors that lead them to have this expectation. This could help corroborate whether their expectations are accurate and, if so, what information and resources they may need to best prepare for this role. Moreover, our finding raises the question of whether their expectation may signal that a family member may be struggling with cognitive problems. Particularly in the absence of people being able to intuitively anticipate their future role as a caregiver, this line of research may help inform evidence-based programs that guide and support individuals in planning and preparing for it.
In comparison of participants who did and did not expect to be a caregiver for a person with AD, those expecting to become an AD caregiver reported higher AD stigma ratings on all seven domains of the FS-ADS. These differences remained after controlling for current or former AD caregiver experience. Interestingly, we found the differences in pity and support were distinct between those with expectations versus experience of AD caregiving. Future studies are needed to understand these differences.
The distinction between the two profiles of results has clinical implications. We commonly find differences in AD stigma reactions based on domains of pity and support (Stites, Johnson, et al., 2018; Stites et al., 2021; Stites, Gill, et al., 2022; Stites, Largent, et al., 2024; Stites, Lee, et al., 2024; Stites, Midgett, Largent, Harkins, Krieger, et al., 2025; Stites, Midgett, Largent, Harkins, Schumann, et al., 2024). Our findings suggest that people who do not expect to be AD caregivers had particularly low scores on these domains, which could foreshadow poor outcomes if they unexpectedly step into the caregiver role. Pity—a feeling of sorrow or compassion for another person’s suffering—may contribute to a caregiver’s ability to empathize, or understand and share that other person’s feelings, and be willing to support a person with AD. Both empathy and support have been shown to be essential for promoting optimal outcomes for caregivers and the persons with AD that they care for (Penninkilampi et al., 2018; Piolatto et al., 2022). It is also possible that willingness to support a person with AD and feelings of pity may arise as instrumental feelings (i.e., feelings that help a person complete a behavior or action) when taking on the caregiving role (Stites et al., 2025).
In addition, new AD caregivers who find themselves unexpectedly stepping into the role of caregiver may benefit from focused clinical support. This might also apply to individuals who are reacting to a family member learning of a positive AD biomarker and considering a heretofore unexpected possibility of stepping into the role as caregiver in the future. Prior studies seem to suggest that how a caregiver comes to recognize that they are entering the caregiving role matters, whether they understood themselves to be caregivers after a diagnosis, rather than first recognizing symptoms and then seeking a diagnosis (Gaugler et al., 2003). Our findings raise the question of the role of biomarker disclosure counseling in offering information to help accurately set expectations for future caregiving needs when returning test results.
Interaction analyses showed that a biomarker result tended not to modify AD stigma due to caregiver status, with only a couple of exceptions. In instances in which it did, we found people who expected not to become an AD caregiver were less concerned about structural discrimination than all other groups. If they become AD caregivers, they may be less prepared to respond effectively to the reactions of others to the care recipient.
Another way of interpreting this finding is that the expectation of AD caregiving alone, even in the absence of a positive test result, is sufficient to heighten worries about structural discrimination. This suggests that spouses and other individuals who coparticipate in a clinical visit with an older adult may anticipate becoming caregivers for that older adult. Those who are may be worrying more than those who are not about structural discrimination, especially when the prospective care recipient has memory problems unexplained by an AD biomarker test (i.e., a negative test result).
Moreover, our findings raise questions about how individuals may respond when they are confronted with information that contradicts their expectations. For instance, people seeking care for themselves or their loved ones may hope for a positive biomarker test result that will make them eligible for treatment. A negative result may pose different clinical challenges for a person who expects to become a caregiver for that patient and for one who does not. The first may feel unsupported in their efforts, while the latter may take solace in the negative result and dismiss or deny emerging problems. In addition, some individuals may seek out AD testing and then talk with their family members about a potential future caregiving need, potentially challenging or setting their relatives’ expectations.
Stigma may deter individuals from considering or preparing for the potential physical, emotional, and financial demands that accompany the caregiving role. Caregivers’ perception of stigma can add to the burden already imposed by the limited structural support available to caregivers, leading to decreased involvement in caregiving (Werner et al., 2012). The negative effects of stigma on the caregiving relationship may be particularly true for adult children caring for their parents, who comprise about one-third of all caregivers of persons with dementia (Stites, Largent, et al., 2022). Their parent might have been someone they saw respected by others, but who is now much less venerable in the eyes of others. Thus, it is essential to develop a policy agenda that includes addressing stigma as part of an effort to reduce the burden of caregiving in dementia.
Effective caregiver planning requires clear policies and procedures. Routine questions during physical examinations for older adults who show cognitive symptoms can help families prepare for future caregiving needs and expectations. Conversations about sharing positive gene or biomarker results can be beneficial. Families should also research local support systems, such as the National Family Caregiver Support Program, safeguard financial resources against fraud, and plan for potential changes in living and care arrangements.
Limitations
While potential participants were invited to participate in this study at random, only some agreed to participate. In addition, the group of participants who had previously only cared for persons with AD was relatively small (n = 80). The findings should be cautiously interpreted as it is uncertain that they would generalize to all persons who were caregivers for persons with AD. Because we collected data on caregiver status in a survey that was not part of the basic demographics used to determine eligibility, we do not know whether caregiver status differentially affected a person’s decision to participate or their performance on the AD biomarker knowledge screening question.
Conclusion
Advances in AD diagnosis and treatment are affecting the caregiver role. People may anticipate taking on this role earlier in the disease experience, and even before symptoms arise. Caregiving experience is a strong predictor of one’s expectations of becoming a caregiver in the future, suggesting that, for most people, becoming a caregiver is unexpected. It is essential to understand the AD stigma experience in this group of potential caregivers as they are instrumental in supporting the early diagnosis and treatment of those with AD.
Supplementary Material
Contributor Information
Shana D Stites, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States; Division of Geriatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States.
Carolyn Kuz, Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States.
Kristin Harkins, Division of Geriatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States.
Pamela Sankar, Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States.
Norma B Coe, Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, United States.
Mary Mittelman, Department of Psychiatry, Grossman School of Medicine, New York University, New York, New York, United States.
Annie L Nguyen, (Psychological Sciences Section).
Supplementary material
Supplementary material is available at The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences online.
Funding
This work was supported by the National Institute on Aging (K23AG065442 to S.D.S., 1K23AG065442-03S1 to S.D.S.); the Alzheimer’s Foundation of America (no grant #); the Alzheimer’s Association (AARF-17-528934 to S.D.S.); and the Centers for Disease Control and Prevention (CDC) Healthy Brain Research Network supported in part by cooperative agreement from the CDC’s Prevention Research Centers Program (U48 DP—00505).
Conflicts of interest
The authors have no conflicts to disclose.
Data availability
The de-identified data, analytic code, and materials on which the study conclusions are based are available for purposes of replication. A written request may be made to the corresponding author. The data have not been made publicly available as the research team has not completed planned analyses for future publications. Reasoning for the sample size, any data exclusions, all manipulations, and all measures are included in this publication. The study design, hypotheses, and analytic plan were not preregistered.
Author contributions
Shana D. Stites wrote the initial draft of the article. Shana D. Stites, Carolyn Kuz, Kristin Harkins, Pamela Sankar, Norma B. Coe, and Mary Mittelman contributed to interpreting the results and writing the article.
Disclaimer
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.
Ethical approval
The Institutional Review Board of the University of Pennsylvania approved all procedures involving human subjects for the “Health Beliefs Study” (no. 828348). All participants provided written informed consent prior to participating.
References
- Alzheimer’s Association. (2023). 2023 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia, 19, 1598–1695. 10.1002/alz.13016 [DOI] [PubMed] [Google Scholar]
- Bazinger C., Kühberger A. (2012). Is social projection based on simulation or theory? Why new methods are needed for differentiating. New Ideas in Psychology, 30, 328–335. 10.1016/j.newideapsych.2012.01.002 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Behuniak S. M. (2011). The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing and Society, 31, 70–92. 10.1017/S0144686X10000693 [DOI] [Google Scholar]
- Betthauser T. J., Koscik R. L., Jonaitis E. M., Allison S. L., Cody K. A., Erickson C. M., Rowley H. A., Stone C. K., Mueller K. D., Clark L. R., Carlsson C. M., Chin N. A., Asthana S., Christian B. T., Johnson S. C. (2020). Amyloid and tau imaging biomarkers explain cognitive decline from late middle-age. Brain: A Journal of Neurology, 143, 320–335. 10.1093/brain/awz378 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Chen H.-Y., Panegyres P. K. (2016). The role of ethnicity in Alzheimer’s Disease: Findings from the C-PATH online data repository. Journal of Alzheimer’s Disease, 51, 515–523. 10.3233/JAD-151089 [DOI] [PubMed] [Google Scholar]
- Chiao C.-Y., Wu H.-S., Hsiao C.-Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62, 340–350. 10.1111/inr.12194 [DOI] [PubMed] [Google Scholar]
- Corner L., Bond J. (2004). Being at risk of dementia: Fears and anxieties of older adults. Journal of Aging Studies, 18, 143–155. 10.1016/j.jaging.2004.01.007 [DOI] [Google Scholar]
- Corrigan P. W. (2000). Mental health stigma as social attribution: Implications for research methods and attitude change. Clinical Psychology: Science and Practice, 7, 48–67. 10.1093/clipsy.7.1.48 [DOI] [Google Scholar]
- Dalton C. C., Gottlieb L. N. (2003). The concept of readiness to change. Journal of Advanced Nursing, 42, 108–117. 10.1046/j.1365-2648.2003.02593.x [DOI] [PubMed] [Google Scholar]
- Dening K. H., King M., Jones L., Vickestaff V., Sampson E. L. (2016). Advance care planning in dementia: Do family carers know the treatment preferences of people with early dementia? PLoS ONE, 11, e0159056. 10.1371/journal.pone.0159056 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dubois B., Hampel H., Feldman H. H., Scheltens P., Aisen P., Andrieu S., Bakardjian H., Benali H., Bertram L., Blennow K., Broich K., Cavedo E., Crutch S., Dartigues J.-F., Duyckaerts C., Epelbaum S., Frisoni G. B., Gauthier S., Genthon R., Jack C. R. Jr. (2016). Preclinical Alzheimer’s disease: Definition, natural history, and diagnostic criteria. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 12, 292–323. 10.1016/J.JALZ.2016.02.002 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Etters L., Goodall D., Harrison B. E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. 10.1111/j.1745-7599.2008.00342.x [DOI] [PubMed] [Google Scholar]
- Family Caregiver Alliance (2016). Caregiver Statistics: Demographics [2016]. Family Caregiver Alliance. https://www.caregiver.org/resource/caregiver-statistics-demographics/ [Google Scholar]
- Fisher R. J. (1993). Social desirability bias and the validity of indirect questioning. Journal of Consumer Research, 20, 303. 10.1086/209351 [DOI] [Google Scholar]
- Frank C., Land W. M., Popp C., Schack T. (2014). Mental representation and mental practice: Experimental investigation on the functional links between motor memory and motor imagery. PloS One, 9, e95175. 10.1371/journal.pone.0095175 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Garand L., Lingler J. H., Conner K. O., Dew M. A. (2009). Diagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Research in Gerontological Nursing, 2, 112–121. 10.3928/19404921-20090401-04 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gaugler J. E., Zarit S. H., Pearlin L. I. (2003). The onset of dementia caregiving and its longitudinal implications. Psychology and Aging, 18, 171–180. 10.1037/0882-7974.18.2.171 [DOI] [PubMed] [Google Scholar]
- Goto Y., Morita K., Suematsu M., Imaizumi T., Suzuki Y. (2023). Caregiver burdens, health risks, coping and interventions among caregivers of dementia patients: A review of the literature. Internal Medicine (Tokyo, Japan), 62, 3277–3282. 10.2169/internalmedicine.0911-22 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Hirschman K. B., Kapo J. M., Karlawish J. H. T. (2006). Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 14, 659–667. 10.1097/01.JGP.0000203179.94036.69 [DOI] [PubMed] [Google Scholar]
- Hughes C. P., Berg L., Danziger W. L., Coben L. A., Martin R. L. (1982). A new clinical scale for the staging of dementia. The British Journal of Psychiatry: The Journal of Mental Science, 140, 566–572. 10.1192/bjp.140.6.566 [DOI] [PubMed] [Google Scholar]
- Jack C. R. Jr., Bennett D. A., Blennow K., Carrillo M. C., Dunn B., Haeberlein S. B., Holtzman D. M., Jagust W., Jessen F., Karlawish J., Liu E., Molinuevo J. L., Montine T., Phelps C., Rankin K. P., Rowe C. C., Scheltens P., Siemers E., Snyder H. M., Sperling R.; Contributors. (2018). NIA‐AA Research Framework: Toward a biological definition of Alzheimer’s disease. Alzheimer’s & Dementia, 14, 535–562. 10.1016/j.jalz.2018.02.018 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Jack C. R., Wiste H. J., Vemuri P., Weigand S. D., Senjem M. L., Zeng G., Bernstein M. A., Gunter J. L., Pankratz V. S., Aisen P. S., Weiner M. W., Petersen R. C., Shaw L. M., Trojanowski J. Q., Knopman D. S.; Alzheimer’s Disease Neuroimaging Initiative. (2010). Brain beta-amyloid measures and magnetic resonance imaging atrophy both predict time-to-progression from mild cognitive impairment to Alzheimer’s disease. Brain: A Journal of Neurology, 133, 3336–3348. 10.1093/brain/awq277 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Largent E. A., Karlawish J. (2019). Preclinical Alzheimer’s disease and the dawn of the “pre-caregiver. JAMA Neurology, 76, 631–632. 10.1001/jamaneurol.2019.0165 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Lennon J. C., Aita S. L., Bene V. A. D., Rhoads T., Resch Z. J., Eloi J. M., Walker K. A. (2022). Black and White individuals differ in dementia prevalence, risk factors, and symptomatic presentation. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 18, 1461–1471. 10.1002/alz.12509 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Lines L. M., Wiener J. M. (2014). Racial and ethnic disparities in Alzheimer’s disease: A literature review. Research Triangle Institute International; U.S. Department of Health and Human Services Assistant Secretary for Planning and Evaluation Office of Disability, Aging and Long-Term Care Policy. https://aspe.hhs.gov/sites/default/files/migrated_legacy_files//138596/RacEthDis.pdf
- Liu R., Chi I., Wu S. (2022). Caregiving burden among caregivers of people with dementia through the lens of intersectionality. Gerontologist, 62, 650–661. 10.1093/geront/gnab146 [DOI] [PubMed] [Google Scholar]
- Lloyd J., Patterson T., Muers J. (2016). The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia (London, England), 15, 1534–1561. 10.1177/1471301214564792 [DOI] [PubMed] [Google Scholar]
- Mehrani I., Sachdev P. S. (2022). The role of Memory Clinics in the assessment and management of dementia, now and into the future. Current Opinion in Psychiatry, 35, 118–122. 10.1097/YCO.0000000000000777 [DOI] [PubMed] [Google Scholar]
- Mukadam N., Livingston G. (2012). Reducing the stigma associated with dementia: Approaches and goals. Aging Health, 8, 377–386. 10.2217/ahe.12.42 [DOI] [Google Scholar]
- Penninkilampi R., Casey A.-N., Singh M. F., Brodaty H. (2018). The association between social engagement, loneliness, and risk of dementia: A systematic review and meta-analysis. Journal of Alzheimer’s Disease: JAD, 66, 1619–1633. 10.3233/JAD-180439 [DOI] [PubMed] [Google Scholar]
- Piolatto M., Bianchi F., Rota M., Marengoni A., Akbaritabar A., Squazzoni F. (2022). The effect of social relationships on cognitive decline in older adults: An updated systematic review and meta-analysis of longitudinal cohort studies. BMC Public Health, 22, 278. 10.1186/s12889-022-12567-5 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Poole M., Bamford C., McLellan E., Lee R. P., Exley C., Hughes J. C., Harrison-Dening K., Robinson L. (2018). End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine, 32, 631–642. 10.1177/0269216317736033 [DOI] [PubMed] [Google Scholar]
- Quinn C., Toms G., Rippon I., Nelis S. M., Henderson C., Morris R. G., Rusted J. M., Thom J. M., Heuvel E., van den, Victor C., Clare L. (2024). Positive experiences in dementia care-giving: Findings from the IDEAL programme. Ageing and Society, 44, 1010–1030. 10.1017/S0144686X22000526 [DOI] [Google Scholar]
- Sferrazza C., Li R. (2020). National research summit on care, services, and supports for persons with dementia and their caregivers: Summit Virtual Meeting Series—Summary Report. National Institute on Aging & National Institutes of Health. https://www.nia.nih.gov/sites/default/files/2021-01/DementiaCareSummitReport.pdf
- Stites S. D., Gill J., Largent E. A., Harkins K., Sankar P., Krieger A., Karlawish J. (2022). The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer’s stigma: A vignette-based experiment. Social Science & Medicine (1982), 292, 114620. 10.1016/j.socscimed.2021.114620 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Johnson R., Harkins K., Sankar P., Xie D., Karlawish J. (2018). 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. Health Communication, 33, 264–273. 10.1080/10410236.2016.1255847 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Largent E. A., Gill J., Gurian A., Harkins K., Karlawish J. (2022). Predictors of who serves as an Alzheimer’s disease research participant’s study partner and the impact of their relationship on study partners’ reports on participants. Research on Aging, 44, 734–746. 10.1177/01640275221075739 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Largent E. A., Johnson R., Harkins K., Karlawish J. (2021). Effects of self-identification as a caregiver on expectations of public stigma of Alzheimer’s disease. Journal of Alzheimer’s Disease Reports, 5, 31–39. 10.3233/ADR-200206 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Largent E. A., Schumann R., Harkins K., Sankar P., Krieger A. (2024). How reactions to a brain scan result differ for adults based on self‐identified Black and White race. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, 20, 1527–1537. 10.1002/alz.13558 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Lee B. N., Largent E. A., Harkins K., Sankar P., Krieger A., Brown R. T. (2024). Double-edged sword: A positive brain scan result heightens confidence in an Alzheimer’s diagnosis but also leads to higher stigma among older adults in a vignette-based experiment. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 79, gbae109. 10.1093/geronb/gbae109 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Midgett S., Largent E. A., Harkins K., Krieger A., Sankar P., Brown L. (2025). Deconstructing Alzheimer’s Stigma: Gender identities correspond with patterns of internalization and judgment. The American Journal of Geriatric Psychiatry: Open Science, Education, and Practice, 5, 63–75. 10.1016/j.osep.2024.11.003 [DOI] [Google Scholar]
- Stites S. D., Midgett S., Largent E. A., Harkins K., Schumann R., Sankar P., Krieger A. (2024). A survey study of Alzheimer’s stigma among Black adults: Intersectionality of Black identity and biomarker diagnosis. Ethnicity & Health, 29, 946–962. 10.1080/13557858.2024.2385110 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Rubright J. D., Karlawish J. (2018). 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. Alzheimer’s & Dementia, 14, 925–932. 10.1016/j.jalz.2018.01.006 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Stites S. D., Schumann R., Kuz C., Harkins K., Largent E., Krieger A., Sankar P., Zuelsdorff M. (2025). Are knowledge and interpersonal contact cures for Alzheimer’s stigma? Data from caregivers offer clues. Stigma and Health, 10, 199–213. 10.1037/sah0000601 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Werner P., Giveon S. M. (2008). Discriminatory behavior of family physicians toward a person with Alzheimer’s disease. International Psychogeriatrics, 20, 824–839. 10.1017/S1041610208007060 [DOI] [PubMed] [Google Scholar]
- Werner P., Goldstein D., Heinik J. (2011). Development and validity of the family stigma in Alzheimer’s disease scale (FS-ADS). Alzheimer Disease and Associated Disorders, 25, 42–48. 10.1097/WAD.0b013e3181f32594 [DOI] [PubMed] [Google Scholar]
- Werner P., Mittelman M. S., Goldstein D., Heinik J. (2012). Family stigma and caregiver burden in Alzheimer’s disease. Gerontologist, 52, 89–97. 10.1093/geront/gnr117 [DOI] [PubMed] [Google Scholar]
- Yu D. S. F., Cheng S.-T., Wang J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1–26. 10.1016/j.ijnurstu.2017.10.008 [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The de-identified data, analytic code, and materials on which the study conclusions are based are available for purposes of replication. A written request may be made to the corresponding author. The data have not been made publicly available as the research team has not completed planned analyses for future publications. Reasoning for the sample size, any data exclusions, all manipulations, and all measures are included in this publication. The study design, hypotheses, and analytic plan were not preregistered.