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A survey study of Alzheimer's stigma among Black adults: intersectionality of Black identity and biomarker diagnosis
Abstract
Objective:
We urgently need to understand Alzheimer's disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black participants and test how AD biomarker test results may affect this stigma.
Design:
We surveyed a sample of 1,150 self-identified Black adults who were randomized to read a vignette describing a fictional person, who was described as either having a positive or negative biomarker test result. After reading the vignette, participants completed the modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). We compared FS-ADS scores between groups defined by age, gender, and United States Census region. We examined interactions between these groupings and AD biomarker test result.
Results:
Participants over age 65 had lower scores (lower stigma) on all 7 FS-ADS domains compared to those under 65: structural discrimination, negative severity attributions, negative aesthetic attributions, antipathy, support, pity, and social distance. In the biomarker positive condition, worries about structural discrimination were greater than in the biomarker negative condition and statistically similar in the two age groups (DOR, 0.39 [95%CI, 0.22-0.69]). This pattern of results was similar for negative symptom attributions (DOR, 0.51 [95%CI, 0.28-0.90]).
Conclusion:
While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adults.
... 24 As stigma is rooted in lack of knowledge, the evolving definition of AD 25 may lead to greater confusion and more stigma. 26,27 People living with dementia have pushed back against the dehumanizing impact of stigma with a simple but powerful statement; "I am still here." [28][29][30] Ageism and dementia stigma are compounded for individuals who have experienced life-long discrimination due to their race, ethnicity, gender identity, ability, and socioeconomic status. ...
... 89 This stigma compounds disparate treatment due to ageism and may impact willingness to engage in research. 27 ...
The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI.
Highlights
A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members.
To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities.
Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.
... Primary care providers can be essential in early identification of ADRD, and yet, most physicians report waiting for their patients or family members to mention symptoms of cognitive decline (Alzheimer's Association, 2019). This may be particularly problematic for individuals living within honor cultures, where speaking to healthcare providers is already stigmatized (Brown, Imura, & Mayeux, 2014;Foster et al., 2021) and where certain groups may hold more stigmatizing ADRD beliefs (e.g., Stites et al., 2024). If those in honor cultures are not talking to their care providers about cognitive changes, they may not receive the necessary care for treatable cognitive deficits (e.g., due to medication side effects, infections, depression), and inadvertently reduce the chance for early intervention and long-term preparation for more serious pathology. ...
In recent years, more attention has been given to cultural predictors of Alzheimer's disease and related dementias (ADRD) risk. Yet, research has overlooked the potential risk conferred by U.S. cultures of honor. There is ample reason to suspect that honor-oriented states are at greater risk for ADRD, as many of the characteristics of honor-oriented states are also risk factors for ADRD (e.g., rurality, economic precariousness) and norms within honor cultures (e.g., risk taking, military enlistment, intimate partner violence) may elevate the chance of experiencing neurocognitive ADRD risk factors, like traumatic brain injury (TBI) and subjective cognitive decline (SCD). The present work examined the extent to which statewide honor-orientation predicted estimates of unintentional TBI deaths (2001–2019), SCD (2015–2019), and ADRD deaths (1999–2019) among non-Hispanic Whites. We controlled for period-matched variables known to be associated with honor cultures and ADRD (e.g., rurality, economic precariousness). After controlling for covariates, we observed that more honor-oriented states had higher unintentional TBI death rates (β = 0.39, p = .016), SCD (β = 0.58, p = .001), and ADRD death rates (β = 0.49, p = .030). Findings suggest that the norms and values of honor cultures may confer higher risk for TBI, SCD, and ADRD. Implications for educational, identification, and intervention efforts are discussed.
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.
Introduction:
The dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities.
Methods:
We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners.
Results:
Dementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non-pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations.
Conclusions:
Significant research gaps remain. Ensuring that ADRD healthcare services and long-term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy-level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a "whole of government" approach involving collaboration across numerous federal agencies.
Importance:
Disparities in quality of care according to patient race and socioeconomic status persist in the US. Differential referral patterns to specialist physicians might be associated with observed disparities.
Objective:
To examine whether differences exist between Black and White Medicare beneficiaries in the observed patterns of patient sharing between primary care physicians (PCPs) and physicians in the 6 specialties to which patients were most frequently referred.
Design, setting, and participants:
This cross-sectional observational study of Black and White Medicare beneficiaries used claims data from 2009 to 2010 on 100% of traditional Medicare beneficiaries who were seen by PCPs and selected high-volume specialists in 12 health care markets with at least 10% of the population being Black. Statistical analyses were conducted from December 20, 2017, to September 30, 2020.
Exposures:
Differences in patterns of patient sharing among Black and White patients.
Main outcomes and measures:
Primary care physician and specialist degree (the number of other PCPs or specialists to whom each physician is connected) and strength (the number of shared patients per connection, overall, for Black patients and White patients and after equalizing the numbers of Black and White patients per PCP), as well as distance between PCP and patient and specialist zip code centroids.
Results:
The 12 selected markets ranged in size from Manhattan, New York (187 054 Black or White beneficiaries seen by at least 2 physicians within an episode of care; 9794 total physicians), to Tallahassee, Florida (44 644 Black or White beneficiaries seen by at least 2 physicians within an episode of care; 847 total physicians). The percentage of Black beneficiaries ranged from 11.5% (Huntsville, Alabama) to 46.8% (Chicago, Illinois). The mean PCP-specialist degree (number of specialists with whom a PCP shares patients) was lower for Black patients than for White patients. For instance, the mean PCP-cardiologist degree across all markets for White patients was 17.5 compared with 8.8 for Black patients. After sampling White patients to equalize the numbers of patients seen, the degree differences narrowed but were still not equivalent in many markets (eg, for all specialties in Baton Rouge, Louisiana: 4.5 for Black patients vs 5.7 for White patients). Specialist networks among White patients were much larger than those constructed based just on Black patients (eg, for cardiology across all markets: 135 for Black patients vs 330 for White patients), even after equalizing the numbers of patients seen per PCP (123 for Black patients vs 211 for White patients). The overall test for differences in referral patterns was statistically significant for all 6 specialties examined in 7 of the 12 markets and in 5 specialties for another 3.
Conclusions and relevance:
This study suggests that differences exist in specialist referral patterns by race among Medicare beneficiaries. This is an observational study, and thus some differences might have resulted from patient-initiated visits to specialists.
Centuries of experience make it clear that establishing the effectiveness of a clinical innovation is not sufficient to guarantee its uptake into routine use. The relatively new field of implementation science has developed to enhance the uptake of evidence-based practices and thereby increase their public health impact. Implementation science shares many characteristics, and the rigorous approach, of clinical research. However, it is distinct in that it attends to factors in addition to the effectiveness of the clinical innovation itself, to include identifying and addressing barriers and facilitators to the uptake of evidence-based clinical innovations. This article reviews the definition, history, and scope of implementation science, and places the field within the broader enterprise of biomedical research. It also provides an overview of this Special Issue of Psychiatry Research, which introduces the principles and methods of implementation science to mental health researchers.
Neuroimaging is advancing a new definition of Alzheimer's disease (AD). Using imaging biomarkers, clinicians may begin to diagnose the disease by identifying pathology and neurodegeneration in either cognitively impaired or unimpaired adults. This “biomarker-based” diagnosis may allow clinicians novel opportunities to use interventions that either delay the onset or slow the progression of cognitive decline, but it will also bring novel challenges. How will changing the definition of AD from a clinical to a biomarker construct change the experience of living with the disease? Knowledge of AD biomarker status can affect how individuals feel about themselves (internalized stigma) and how others judge them (public stigma). Following a review of AD stigma, we appraise how advances in diagnosis may enable or interrupt its transfer from clinical to preclinical stages and then explore conceptual and pragmatic challenges to addressing stigma in routine care.
The World Alzheimer Report 2012: Overcoming the stigma of dementia, released on 21 September 2012, shares results from a worldwide survey conducted with people with dementia and carers on their personal experiences of stigma. The report provides information on stigma and dementia, highlights best practices in the field of dementia, and makes recommendations which could help reduce stigma.
Objectives:
To investigate health disparities with respect to cost of care across 4 state Medicaid populations.
Methods:
Data were obtained from Centers for Medicare and Medicaid Services (CMS) for this retrospective study. Patients were enrolled in a California, Florida, New Jersey, or New York Medicaid programs during 2004, with a diagnosis of Alzheimer's disease (International Classification of Diseases, Ninth Revision 331.0). Outcome of interest was cost of care. Decomposition of cost to calculate disparities was estimated using the Oaxaca-Blinder model. An a priori α level of .01 was used.
Results:
Approximately 158 974 individuals qualified for this study. Disparities were found to exist between blacks and whites (with blacks having higher costs; P < .0001), whites and others (with whites having higher costs; P < .0001), blacks and Hispanics (with blacks having higher costs; P < .0001), blacks and others (with blacks having higher costs; P < .0001), and Hispanics and others (with Hispanics having higher costs; P < .0001).
Conclusions:
Disparities in cost among minority-to-minority populations were just as prevalent, if not higher, than minority-white disparities.
The course and outcomes of mental illness are hampered by stigma and discrimination. Research on controllability attributions has mapped the relationships between signaling events, mediating stigma, emotional reactions, and discriminating behavior. In this article, I describe how an attribution model advances research questions related to mental health stigma in three areas. (1) Stigma research needs to examine signaling events related to psychiatric stigma including the label of mental illness, behaviors associated with psychiatric symptoms, and physical appearance. (2) Research into mediating knowledge structures needs to bridge information about controllability attributions with public attitudes about dangerousness and self-care. (3) Ways in which these knowledge structures lead to emotional reactions (pity, anger, and fear) as well as behavioral responses (helping and punishing behaviors) need to be examined. The attribution model has significant implications for social change strategies that seek to decrease mental illness stigma and discrimination.
This study examined determinants of discriminatory behavior towards a person with Alzheimer's disease (AD) using an attribution model. More specifically, the effects of residing in a nursing home compared with the community were examined.
A phone survey was conducted during the summer of 2007 with a representative sample of 501 lay persons (mean age = 49) in Israel. Information regarding participants' discriminatory behavior towards a male person with AD was elicited using a vignette methodology. The effects of emotional reactions, perceptions of dangerousness and responsibility of the person depicted in the vignette as well as perceptions about the susceptibility of developing Alzheimer's disease were examined together with the effects of place of residence.
Four forms of discriminatory behavior were found: coercion to restraint physically, coercion to restraint medically, segregation and avoidance. Results of the study provided partial support for an extended version of the attribution model, in that negative emotions were found to increase discrimination, whereas pity decreased avoidance. Perceptions of dangerousness were one of the main variables predicting discrimination. Contrary to the hypothesized relationships, being in a nursing home did not increase discrimination.
The present study adds new information about factors associated to the stigma of AD.
Objectives:
To identify the characteristics of those who tend to hold stigmatising beliefs and behaviours towards people living with dementia to inform dementia education and the targeting of interventions to reduce dementia-related stigma.
A nationally representative telephone survey of 1000 Australians aged 18-93 years was conducted to assess general knowledge of dementia and dementia-related stigma. A single open-ended question was used to assess participants' general knowledge of dementia. Modified items from the Lay Public Dimension of the Family Stigma in Alzheimer's Disease Scale were used to assess dementia-related stigma.
Only 26% of participants demonstrated good dementia knowledge while almost half of the participants had a mixed understanding of dementia. Dementia-related negative cognitive attributions were found to be higher in (1) the older age cohorts, (2) amongst individuals who know someone with dementia, (3) speak a language other than English at home, and (4) have a better understanding of dementia. Older age cohorts, men, those who do not know someone with dementia, and those who speak a non-English language at home also reported significantly higher discriminatory behavioural reactions compared to the younger age cohorts, females, those who know someone with dementia, and those who speak English only at home.
This study identifies a need for improved public education about dementia. A structured approach to the development of strategies that is specifically tailored to different age, gender and cultural groups may provide a beneficial approach to help improve dementia knowledge and reduce dementia-related stigma in the population.
Background
Black/African Americans are less likely to receive an accurate diagnosis of mild cognitive impairment (MCI) than their White counterparts. We examined rates of low cognitive test scores by race among older adults diagnosed with MCI to illuminate possible biases in the diagnostic process.
Method
We compared number of low scores (i.e., <9th percentile) on cognitive tests between Black ( n = 545) and White ( n = 3,542) participants diagnosed with MCI based on the Clinical Dementia Rating. Participants were drawn from the National Alzheimer’s Coordinating Center Uniform Data Set. Chi‐square tests were used to examine racial differences in rates of low scores for each cognitive test, and t ‐tests were used to compare the number of low scores across groups.
Result
Compared to Black participants, White individuals demonstrated significantly higher rates of low scores on tests of memory, attention, and verbal fluency. White participants with MCI also evidenced a higher number of low scores overall ( M = 3.67, SD = 2.46) than Black participants ( M = 2.46, SD = 2.15), d = .48.
Conclusion
Results suggest there may be bias in MCI classification based on clinical interview, leading to overdiagnosis among Black individuals and/or underdiagnosis among White individuals.
Research on racial differences in Alzheimer disease (AD) dementia has increased in recent years. Older African American individuals bear a disproportionate burden of AD and cognitive impairment compared with non-Latino white individuals. Tremendous progress has been made over the past two decades in our understanding of the neurobiological substrates of AD. However, owing to well-documented challenges of study participant recruitment and a persistent lack of biological data in the African American population, knowledge of the drivers of these racial disparities has lagged behind. Therapeutic targets and effective interventions for AD are increasingly sought, but without a better understanding of the disease in African American individuals, any identified treatments and/or cures will evade this rapidly growing at-risk population. In this Perspective, I introduce three key obstacles to progress in understanding racial differences in AD: uncertainty about diagnostic criteria, disparate cross-sectional and longitudinal findings; and a dearth of neuropathological data. I also highlight evidence-informed strategies to move the field forward.
Objective
Differences between men and women are common in published research on aging and Alzheimer’s disease and Alzheimer’s disease and related dementias (AD/ADRD). What do these differences mean? To answer this, rigorous measurement is needed. We investigated current methods for measuring sex/gender in aging and AD/ADRD cohort studies.
Method
An online survey was sent to NIA-funded Alzheimer’s Disease Research Centers (ADRCs) (n=38) and investigator-initiated cohort studies (n=38) to assess practices around enrollment of men and women and measurement of sex and gender.
Results
The response rate was 65.8% (n=50). All enrolled men and all but two investigator-initiated studies enrolled women. Most cohorts (43/50) had no documented definitions for categories of “men” or “women”. Over 85% of cohorts relied solely on self-report questions to capture sex/gender data (n=43/50). Issues with administration were also identified (n=7).
Discussion
Our findings identify gaps in current approaches used to measure sex and gender in aging and AD/ADRD research. We discuss opportunities to bridge these gaps and advance measurement of sex and gender in aging and AD/ADRD research. Changes are needed to ensure inclusion and representation of sociocultural diversity in research samples, and consistency in data collection in aging and AD/ADRD research.
Introduction:
Although dementia prevalence differs by race, it remains unclear whether cognition and neuropsychiatric symptom severity differ between Black and White individuals with dementia.
Methods:
Using National Alzheimer's Coordinating Center (NACC) data, we evaluated dementia prevalence in non-Hispanic Black and White participants and compared their clinicodemographic characteristics. We examined race differences in cognition, neuropsychiatric symptoms, and functional abilities in participants with dementia using multivariable linear and logistic regression models.
Results:
We included 5,700 Black and 31,225 White participants across 39 Alzheimer's Disease Research Centers. Of these, 1,528 (27%) Black and 11,267 (36%) White participants had dementia diagnoses. Despite having lower dementia prevalence, risk factors were more prevalent among Black participants. Black participants with dementia showed greater cognitive deficits, neuropsychiatric symptoms/severity, and functional dependence.
Discussion:
Despite lower dementia prevalence, Black participants with dementia had more dementia risk factors, as well as greater cognitive impairment and neuropsychiatric symptom severity than White participants.
Objective
The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that a “preclinical” diagnosis of AD and treatment that improves prognosis will mitigate stigmatizing reactions.
Methods
A sample of U.S. adults were randomized to receive one vignette created by a 3 × 2 × 2 vignette-based experiment that described a person with varied clinical symptom severity (Clinical Dementia Rating stages 0 (no dementia), 1 (mild), or 2 (moderate)), AD biomarker test results (positive vs negative), and disease-modifying treatment (available vs not available). Between-group comparisons were conducted of scores on the Modified Family Stigma in Alzheimer's Disease Scale (FS-ADS).
Results
The sample of 1,817 adults had a mean age two years younger than that of U.S. adults but was otherwise similar to the general adult population. The response rate was 63% and the completion rate was 96%. In comparisons of randomized groups, mild and moderate symptoms of dementia evoked stronger reactions on all FS-ADS domains compared to no dementia (all p < 0.001). A positive biomarker test result evoked stronger reactions on all but one FS-ADS domain (negative aesthetic attributions) compared to a negative biomarker result (all p < 0.001). Disease-modifying treatment had no measurable influence on stigma (all p > 0.05).
Conclusions
The stigmas of dementia spill over into preclinical AD, and availability of treatment does not alter that stigma. Translation of the preclinical AD construct from research into practice will require interventions that mitigate AD stigma to preserve the dignity and identity of individuals living with AD.
The purpose of this study was to identify the perceptions and attitudes of African American congregants toward dementia before and after attending a dementia-focused workshop. Six churches in Metropolitan Atlanta, Georgia, hosted the workshops. Attendees ( N = 171) participated in a free association exercise to evaluate their perceptions and attitudes toward dementia. Before and after the workshop, participants wrote words and phrases that occurred to them when they thought of dementia. Content analysis was used to identify themes. Before the workshop, participants’ responses tended to include negative language (e.g., fear, memory loss, sadness). After the workshop, participants expressed more positive words (e.g., support, hopefulness, caring). These findings suggest that education can change congregants’ perceptions about dementia and potentially reduce dementia-associated stigma. This change will allow families to feel comfortable both interacting with and seeking help from those in their faith communities.
Objective
African American women experience a higher burden of caregiving, but they are often underrepresented in studies on caregiver health. This study used a participatory process to elucidate how African American women caring for older adults view health and factors that influence health.
Methods
We invited African American women ages 24–64 years old who reported caring for an older adult for group concept mapping, a process consisting of five steps: 1) preparation, 2) idea generation, 3) sorting and rating, 4) creating map, and 5) interpreting maps. Participants (n = 29) first completed idea generation by responding to the focus prompt “A healthy life for a caregiver includes _____.” Participants then sorted ideas into clusters based on conceptual similarity and rated each idea on desirability and importance. Data were managed via The Concept System Global MAX Software.
Results
Idea generation identified 512 ideas that reduced to 99 unique ideas. Using the 99 ideas, a cluster map with 12 outcome domains best fit the data. Identified clusters included spirituality, maintaining relationships, good character, taking action to cope, preserving oneself, support, personal empowerment, resources, striving for peace, handling emotions, wellness, and taking care of self and place. Forty-three ideas representing 10 of the 12 domains were rated high for desirability and importance.
Conclusion
A participatory research method was used to integrate the voice of African American women caregivers and provide a rich set of elements necessary for their health and well-being. We also identified potential focus areas for interventions aimed at promoting the health of these caregivers.
Alzheimer’s disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America’s annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.
Introduction:
Understanding the prevalence of beliefs, attitudes, and expectations about Alzheimer's disease dementia in the public could inform strategies to mitigate stigma.
Methods:
Random sample of 317 adults from the U.S. public was analyzed to understand reactions toward a man with mild-stage Alzheimer's disease dementia.
Results:
In adjusted analyses, over half of respondents expected the person to be discriminated against by employers (55.3%; 95% confidence interval [CI] = 47.0-65.2) and be excluded from medical decision-making (55.3%; 95% CI = 46.9-65.4). Almost half expected his health insurance would be limited based on data in the medical record (46.6%; 95% CI = 38.0-57.2), a brain imaging result (45.6%, 95% CI = 37.0-56.3), or genetic test result (44.7%; 95% CI = 36.0-55.4).
Discussion:
Public education and policies are needed to address concerns about employment and insurance discrimination. Studies are needed to discover how advances in diagnosis and treatment may change Alzheimer's disease stigma.
Purpose
Apolipoprotein-E (APOE) genetic testing to estimate risk for developing late-onset Alzheimer disease is increasingly being offered without prior genetic counseling or preparation. Consumer interest continues to grow, raising the question of how best to conduct such testing.
Methods
Twenty-six semistructured interviews were carried out to study the reactions of individuals who had already learned of their higher risk after APOE testing had been done because of a family history of Alzheimer disease, or from genetic tests done for other health-related or general-interest reasons.
Results
Adverse psychological reactions were reported by a substantial fraction of the participants, including those who had specifically sought testing, those for whom the information came as a surprise, those with a family history, and those with no known history. Still, nearly all of those interviewed said that they had benefited in the long term from lifestyle changes, often learned from online sources, that they subsequently made.
Conclusion
The results show that people should be prepared prior to any genetic testing and allowed to opt out of particular tests. If testing is carried out and a higher risk is revealed, they should be actively assisted in deciding how to proceed.
Stigma negatively affects individuals with cognitive impairment and dementia. This literature review examined the past decade (January 2004-December 2015) of world-wide research on dementia-related stigma. Using standard systematic review methodology, original research reports were identified and assessed for inclusion based on defined criteria. Initial database searches yielded 516 articles. After removing duplicates and articles that did not fit inclusion criteria (419), 97 articles were reviewed, yielding a leaving a final total of 51 publications, mainly originating in the U.S. and Europe. Studies were assessed for date, geographic region, sample description, methodology and key findings. Reports were evaluated on; 1) how stigmatizing attitudes may present in various sub-groups, including in racial or ethnic minorities, 2) stigma assessment tools and, 3) prospective or experimental approaches to assess or manage stigma. Stigma impedes help-seeking and treatment, and occurs broadly and world-wide. Stigmatizing attitudes appear worse among those with limited disease knowledge, with little contact with people with dementia, in men, in younger individuals, and in the context of ethnicity and culture. In some cases, health providers may have stigmatizing attitudes. In research studies, there does not appear to be consensus on how to best evaluate stigma, and there are few evidence-based stigma reduction approaches. Given the projected increase in persons with dementia globally, there is a critical need for research that better identifies and measures stigma and tests new approaches that can reduce stigmatizing attitudes.
The general public’s views can influence whether people with Alzheimer’s disease (AD) experience stigma. The purpose of this study was to understand what characteristics in the general public are associated with stigmatizing attributions. A random sample of adults from the general population read a vignette about a man with mild Alzheimer’s disease dementia and completed a modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS). Multivariable ordered logistic regressions were used to examine relationships between personal characteristics and FS-ADS ratings. Older respondents expected that persons with AD would receive less support (OR=0.82, p=.001), have social interactions limited by others (OR=1.13, p=.04), and face institutional discrimination (OR=1.13, p=.04). Females reported stronger feelings of pity (OR=1.57, p=.03) and weaker reactions to negative aesthetic features (OR=0.67, p=.05). Those who believed strongly that AD was a mental illness rated symptoms more severely (OR=1.78, p=.007). Identifiable characteristics and beliefs in the general public are related to stigmatizing attributions toward AD. To reduce AD stigma, public health messaging campaigns can tailor information to subpopulations, recognizable by their age, gender, and beliefs.
Health care in the United States is more expensive than in other developed countries, costing $2.7 trillion in 2011, or 17.9 percent of the national gross domestic product. Increasing costs strain budgets at all levels of government and threaten the solvency of Medicare, the nation's largest health insurer. At the same time, despite advances in biomedical science, medicine, and public health, health care quality remains inconsistent. In fact, underuse, misuse, and overuse of various services often put patients in danger. Many efforts to improve this situation are focused on Medicare, which mainly pays practitioners on a fee-for-service basis and hospitals on a diagnoses-related group basis, which is a fee for a group of services related to a particular diagnosis. Research has long shown that Medicare spending varies greatly in different regions of the country even when expenditures are adjusted for variation in the costs of doing business, meaning that certain regions have much higher volume and/or intensity of services than others. Further, regions that deliver more services do not appear to achieve better health outcomes than those that deliver less. Variation in Health Care Spending investigates geographic variation in health care spending and quality for Medicare beneficiaries as well as other populations, and analyzes Medicare payment policies that could encourage high-value care. This report concludes that regional differences in Medicare and commercial health care spending and use are real and persist over time. Furthermore, there is much variation within geographic areas, no matter how broadly or narrowly these areas are defined. The report recommends against adoption of a geographically based value index for Medicare payments, because the majority of health care decisions are made at the provider or health care organization level, not by geographic units. Rather, to promote high value services from all providers, Medicare and Medicaid Services should continue to test payment reforms that offer incentives to providers to share clinical data, coordinate patient care, and assume some financial risk for the care of their patients. Medicare covers more than 47 million Americans, including 39 million people age 65 and older and 8 million people with disabilities. Medicare payment reform has the potential to improve health, promote efficiency in the U.S. health care system, and reorient competition in the health care market around the value of services rather than the volume of services provided. The recommendations of Variation in Health Care Spending are designed to help Medicare and Medicaid Services encourage providers to efficiently manage the full range of care for their patients, thereby increasing the value of health care in the United States. © 2013 by the National Academy of Sciences. All rights reserved.
Background:
The classification of Alzheimer's disease is undergoing a significant transformation. Researchers have created the category of "preclinical Alzheimer's," characterized by biomarker pathology rather than observable symptoms. Diagnosis and treatment at this stage could allow preventing Alzheimer's cognitive decline. While many commentators have worried that persons given a preclinical Alzheimer's label will be subject to stigma, little research exists to inform whether the stigma attached to the label of clinical Alzheimer's will extend to a preclinical disorder that has the label of "Alzheimer's" but lacks the symptoms or expected prognosis of the clinical form.
Research questions:
The present study sought to correct this gap by examining the foundations of stigma directed at Alzheimer's. It asked: do people form stigmatizing reactions to the label "Alzheimer's disease" itself or to the condition's observable impairments? How does the condition's prognosis modify these reactions?
Methods:
Data were collected through a web-based experiment with N = 789 adult members of the U.S. general population (median age = 49, interquartile range, 32-60, range = 18-90). Participants were randomized through a 3 × 3 design to read one of 9 vignettes depicting signs and symptoms of mild stage dementia that varied the disease label ("Alzheimer's" vs. "traumatic brain injury" vs. no label) and prognosis (improve vs. static vs. worsen symptoms). Four stigma outcomes were assessed: discrimination, negative cognitive attributions, negative emotions, and social distance.
Results:
The study found that the Alzheimer's disease label was generally not associated with more stigmatizing reactions. In contrast, expecting the symptoms to get worse, regardless of which disease label those symptoms received, resulted in higher levels of perceived structural discrimination, higher pity, and greater social distance.
Conclusion:
These findings suggest that stigma surrounding pre-clinical Alzheimer's categories will depend highly on the expected prognosis attached to the label. They also highlight the need for models of Alzheimer's-directed stigma that incorporate attributions about the condition's mutability.
Critics of labeling theory vigorously dispute Scheff's (1966) provocative etiological hypothesis and downplay the importance of factors such as stigma and stereotyping. We propose a modified labeling perspective which claims that even if labeling does not directly produce mental disorder, it can lead to negative outcomes. Our approach asserts that socialization leads individuals to develop a set of beliefs about how most people treat mental patients. When individuals enter treatment, these beliefs take on new meaning. The more patients believe that they will be devalued and discriminated against, the more they feel threatened by interacting with others. They may keep their treatment a secret, try to educate others about their situation, or withdraw from social contacts that they perceive as potentially rejecting. Such strategies can lead to negative consequences for social support networks, jobs, and self-esteem. We test this modified labeling perspective using samples of patients and untreated community residents, and find that both believe that "most people" will reject mental patients. Additionally, patients endorse strategies of secrecy, withdrawal, and education to cope with the threat they perceive. Finally, patients' social support networks are affected by the extent to which they fear rejection and by the coping responses they adopt to deal with their stigmatized status.
A new secondary prevention trial in older people with amyloid accumulation at high risk for Alzheimer's disease dementia should provide insights into whether anti-amyloid therapy can delay cognitive decline.
Bodies of research pertaining to specific stigmatized statuses have typically developed in separate domains and have focused on single outcomes at 1 level of analysis, thereby obscuring the full significance of stigma as a fundamental driver of population health. Here we provide illustrative evidence on the health consequences of stigma and present a conceptual framework describing the psychological and structural pathways through which stigma influences health. Because of its pervasiveness, its disruption of multiple life domains (e.g., resources, social relationships, and coping behaviors), and its corrosive impact on the health of populations, stigma should be considered alongside the other major organizing concepts for research on social determinants of population health. (Am J Public Health. Published online ahead of print March 14, 2013: e1-e9. doi:10.2105/AJPH.2012.301069).
Social science research on stigma has grown dramatically over the past two decades, particularly in social psychology, where researchers have elucidated the ways in which people construct cognitive categories and link those categories to stereotyped beliefs. In the midst of this growth, the stigma concept has been criticized as being too vaguely defined and individually focused. In response to these criticisms, we define stigma as the co-occurrence of its components–labeling, stereotyping, separation, status loss, and discrimination–and further indicate that for stigmatization to occur, power must be exercised. The stigma concept we construct has implications for understanding several core issues in stigma research, ranging from the definition of the concept to the reasons stigma sometimes represents a very persistent predicament in the lives of persons affected by it. Finally, because there are so many stigmatized circumstances and because stigmatizing processes can affect multiple domains of people's li...
Although it is widely assumed that persons with Alzheimer disease (AD) and their family caregivers are victims of stigmatization, family stigma in the area of AD has received surprisingly limited attention. Reliable, valid, and user-friendly scales are a first step in expanding this body of knowledge. The aim of this study was to develop and examine the validity of the Family Stigma in Alzheimer's disease Scale. Interviews were conducted with 185 children of persons with AD. A pool of 100 items was identified from the literature and an earlier qualitative study including 3 dimensions (caregivers' stigma, lay persons' stigma, and structural stigma). Exploratory factor analyses, theoretical relevance, and internal reliability analyses allowed us to reduce the pull to 62 items. Regarding construct validity, statistically significant associations were found between family stigma and caregivers' burden and behavioral problems, in most of the scales. Although further testing is warranted, these findings indicate that the Family Stigma in Alzheimer's disease Scale is a reliable and valid instrument for assessing stigma in the context of AD.
Accurate clinical staging of dementia in older subjects has not previously been achieved despite the use of such methods as psychometric testing, behavioural rating, and various combinations of simpler psychometric and behavioural evaluations. The Clinical Dementia Rating (CRD), a global rating device, was developed for a prospective study of mild senile dementia--Alzheimer type (SDAT). Reliability, validity, and correlational data are discussed. The CRD was found to distinguish unambiguously among older subjects with a wide range of cognitive function, from healthy to severely impaired.
Stigma can greatly exacerbate the experience of mental illness. Diagnostic classification frequently used by clinical social
workers may intensify this stigma by enhancing the public's sense of “groupness” and “differentness” when perceiving people
with mental illness. The homogeneity assumed by stereotypes may lead mental health professionals and the public to view individuals
in terms of their diagnostic labels. The stability of stereotypes may exacerbate notions that people with mental illness do
not recover. Several strategies may diminish the unintended effects of diagnosis. Dimensional approaches to diagnosis may
not augment stigma in the same manner as classification. Moreover, regular interaction with people with mental illness and
focusing on recovery may diminish the stigmatizing effects of diagnosis.
Geographic Disparities in Mortality from Alzheimer’s Disease and Related Dementias - Akushevich - 2021 - Journal of the American Geriatrics Society - Wiley Online Library
- Igor Akushevich
- Arseniy Yashkin
- Anatoliy Yashin
- Julia Kravchenko
- Akushevich Igor
Akushevich, Igor, Arseniy Yashkin, Anatoliy Yashin, and Julia Kravchenko. 2021. "Geographic
Disparities in Mortality from Alzheimer's Disease and Related Dementias -Akushevich -2021
-Journal of the American Geriatrics Society -Wiley Online Library." Journal of the American
Geriatrics Society. https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111jgs.17215.
Overcoming the Stigma of Dementia
- Nicole L Batsch
- Mary S Mittelman
Batsch, Nicole L, and Mary S Mittelman. 2012. "World Alzheimer Report 2012." Overcoming the
Stigma of Dementia.[Citado 2012 Ene 21] Http://Www. Alz. Co. Uk/Research/World-Report-2012.
American Community Survey (ACS)
- Bureau
- Census
Bureau, US Census. 2020. "American Community Survey (ACS)." Census.Gov. 2020. https://www.
census.gov/programs-surveys/acs.
World Alzheimer Report 2021: Journey through the Diagnosis of Dementia
- Pedro Gauthier Serge
- A Rosa-Neto José
- Claire Morais
- Webster
Gauthier, Serge, Pedro Rosa-Neto, José A. Morais, and Claire Webster. 2021. "World Alzheimer
Report 2021: Journey through the Diagnosis of Dementia," September. https://www.alzint.
org/resource/world-alzheimer-report-2021/.
Racial and Ethnic Disparities in Alzheimer's Disease: A Literature Review
- Lisa M Lines
- Joshua M Wiener
Lines, Lisa M., and Joshua M. Wiener. 2014. "Racial and Ethnic Disparities in Alzheimer's Disease:
A Literature Review." Research Triangle Park (NC): Research Triangle Institute International;
American Community Survey (ACS).” Census.Gov
- U S Bureau
- Census
Racial and Ethnic Disparities in Alzheimer’s Disease: A Literature Review.” Research Triangle Park (NC): 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
- Lines Lisa
- Joshua M Wiener
The Black Population
- D Rastogi Sonya Tallese
- M Johnson Elizabeth
- Malcolm P Hoeffel
- Drewery