Alzheimer's disease and related dementias (ADRD) pose growing public health concerns for the U.S. health care system, impacting patients, family caregivers, health services workers, and policymakers. The U.S. population of adults age ≥65 is expected to increase to an estimated 88 million people by 2050—a 60% increase from the U.S. older adult population in 2019 (Alzheimer's Association, 2019). Aging is the greatest risk factor for ADRD (Alzheimer's Association, 2019; van der Flier & Scheltens, 2005); accordingly, the number of older adults with ADRD is projected to increase alongside rising life expectancies (World Health Organization, 2015). At the same time, the U.S. population is becoming increasingly diverse, particularly among older adults. By 2050, >40% of the U.S. older adult population is expected to comprise people from minority groups, as compared to 20% in 2010 (Barnes & Bennett, 2014).
These demographic shifts pose particular challenges for the African American community, as there is increasing evidence that African American individuals may be disproportionally burdened by ADRD compared to the non-Hispanic White (“White” herein) population (Barnes & Bennett, 2014; Mayeda, Glymour, Quesenberry, & Whitmerd, 2016; Potter et al., 2009; Steenland, Goldstein, Levey, & Wharton, 2016). A growing number of epidemiological studies indicate that African American individuals are two to three times more likely than White individuals to have Alzheimer's disease (Chen & Zissimopoulos, 2018; Gaskin, LaVeist, & Richard, 2013; Potter et al., 2009). This disparity may stem from the complex interaction of racial differences in biopsychosocial and historical factors (Barnes & Bennett, 2014; Chin, Negash, & Hamilton, 2011). In particular, access to quality education and cardiovascular comorbidities may drive increased dementia risk for African American individuals (Glymour & Manly, 2008; Yaffe et al., 2013).
Previous studies have primarily documented ADRD disparities between older African American individuals and their White peers in community samples. Thus far, research has failed to explore whether these inequities extend to long-term care (LTC) residents, despite their potential impact on successful resident-centered care and resident transitions in care. LTC settings are unique for their high base rates of people with cognitive and functional impairments (Mansbach & Mace, 2019), as well as high occurrence of behavioral and psychological symptoms of dementia (BPSD) (Wang, Albayrak, & van der Cammen, 2019). BPSD are directly associated with increased caregiver burden (Fauth, Zarit, Femia, Hofer, & Stephens, 2006). Moreover, the lifetime probability of at least a brief stay in a nursing home may exceed 50% among older adults (Hurd, Michaud, & Rohwedder, 2017); and increased cognitive impairment and functional burden significantly predict LTC placement (Hatoum, Thomas, Lin, Lane, & Bullock, 2009; Yaffe et al., 2002).
The objective of the current study was to investigate possible racial disparities in dementia among LTC residents. African American and White residents' (age ≥50) scores on the Brief Cognitive Assessment Tool (BCAT®; Mansbach, MacDougall, & Rosenzweig, 2012), a commonly used test for dementia in LTC settings, were compared to examine three critical and unaddressed questions. First, does dementia disproportionately affect African American compared to White LTC residents? In this respect, does cognitive impairment in the LTC setting mirror that documented in community samples? Second, do African American individuals reach progressive stages of dementia (mild–moderate versus severe) at earlier ages than their White peers? Third, are there racial differences in rate of cognitive decline? Answers to these questions may help better understand racial disparities in cognitive dysfunction and guide policymakers in the development of programs to readdress these inequities.
Participants and Procedures
Retrospective analysis was performed on archival data from studies approved by the facilities' Medical Ethics Committees, Institutional Review Boards, and the Maryland Office of Health Care Quality. Participants were older adult LTC residents in Maryland nursing home and assisted living facilities. Residents were referred by attending physicians at their facilities (based on staff recommendations, chart review, examination, and interdisciplinary rounds) to licensed clinical psychologists for evaluation of neurocognitive functioning. All residents with capacity reviewed and signed written informed consent and those with severe dementia did so via a caregiver or health care proxy before completing the BCAT with facility staff (e.g., social work, nursing, therapy) or research assistants. Demographic data were collected via interview with each participant and corroborated by facility medical records.
Several precautions were taken to reduce the possibility of bias from study staff on data collection and analysis. First, all testers received standardized educational materials and demonstrated proficiency in administering the BCAT via a post-training test. Second, a random audit of BCAT tests confirmed the accuracy of cognitive assessment administration and scoring. Finally, all study protocols were anonymized as part of the data entry process. The researchers, who were not involved in data collection, had no ability to identify participants.
The BCAT (Mansbach et al., 2012) was administered to 1,350 assisted living and nursing home residents in 61 facilities in Maryland. Participants with physical, sensory, and psychiatric impairments were included as long as they could complete the BCAT and had proficiency in English. Of these residents, 1,290 (95.6%) identified as African American or White race. Residents were excluded for living in independent units of their facility (n = 36) and age <50 (n = 15). As presented in Table 1, the final sample comprised 1,239 participants (91.8% of identified residents) for retrospective analysis.
Descriptive Statistics of Long-Term Care Residents by Race (N = 1,239)
The BCAT (Mansbach et al., 2012) is a multi-domain cognitive instrument that emphasizes the assessment of contextual memory, executive functioning, and attentional capacity. The BCAT was selected because it: (a) has not evidenced a racial bias; (b) has demonstrated strong psychometrics among older adult LTC residents; and (c) is commonly used in these settings (Mansbach et al., 2012; Mansbach, Mace, & Clark, 2014; Mansbach, Mace, Clark, & Firth, 2017). The BCAT can be individually administered in 15 minutes by a paraprofessional without special equipment. The BCAT total score (21 items, range = 0 to 50) is sensitive to a range of cognitive functioning and allowed comparison of dementia stages by race. Cognitive levels were identified based on the BCAT cutoff score ranges: normal cognition = 44 to 50, mild cognitive impairment (MCI) = 34 to 43, mild to moderate dementia = 19 to 33, and severe dementia = 0 to 18 (MacDougall, Mansbach, Clark, & Mace, 2015; Mansbach et al., 2012; Mansbach et al., 2014).
The BCAT development study of assisted living residents (N = 112) evidenced strong internal consistency (Cronbach's alpha = 0.92), test–retest reliability (r = 0.99), and construct validity (Mansbach et al., 2012). BCAT cut scores for identifying MCI and dementia have demonstrated excellent sensitivity (MCI = 0.98, dementia = 0.95), specificity (MCI = 0.92, dementia = 0.87), positive predictive value (MCI = 0.95, dementia = 0.96), and negative predictive value (MCI = 0.99, dementia = 0.96) (Mansbach et al., 2019). In a comparison study, the BCAT was more predictive of dementia diagnoses than the Brief Interview for Mental Status (BIMS) (Mansbach et al., 2014), which is the mandated cognitive instrument in U.S. nursing homes.
Analyses were conducted in R 3.5.1 with RStudio 1.1.463. Odds ratios were used to investigate whether progressive stages of dementia (i.e., BCAT scores of mild– moderate versus severe) disproportionately occurred in African American participants relative to White participants (Question 1). A two-way analysis of variance and Tukey's test examined whether African American individuals reached sequential stages of dementia at significantly earlier ages than their White peers (Question 2). A general additive model was built to sensitively delineate the aging trajectory of cognition between African American and White participants (Question 3). A semiparametric model predicting BCAT scores was fit with a factor-smooth interaction for age and race. A varying intercept term was included to determine whether overall racial differences in BCAT scores were significantly associated with age trajectories in addition to rates of cognitive decline. Education was added as a parametric effect to adjust for sociodemographic differences between African American and White participants (Atkinson et al., 2005; Castora-Binkley, Peronto, Edwards, & Small, 2015; Chin et al., 2011; Potter et al., 2009). The sample exceeded recommendations for modeling the race × age interaction (Heo & Leon, 2010).
Overall, African American individuals were approximately 5 years younger (mean age = 75.11, SD = 11.28 years) than White participants (mean age = 80.28, SD = 10.75 years), with a small–medium effect size (t = 6.62, p < 0.001, d = 0.48 [95% confidence interval (CI) [0.33, 0.62]). A significantly greater proportion of White participants had greater than a high school education (50.2%, 10.5% difference) compared to African American participants (39.7%) (χ2 = 8.14, p = 0.004, V = 0.08). Race was not significantly associated with the gender composition of the current sample (p = 0.89).
Participant characteristics were compared to the most recent national statistics from the U.S. Nursing Home Compendium (Centers for Medicare & Medicaid Services [CMS], 2015). There was a small but statistically significant difference in the proportion of African American individuals (19.3%) compared to the national nursing home population (15.4%) (χ2 = 13.85, p < 0.001, V = 0.003). Similarly, there was a small but statistically significant difference in the age distributions (<65 years = 11.9%, 65 to 74 years = 20.7%, 75 to 84 years = 28.8%, 85 to 95 years = 34.6%, >95 years = 4%) relative to the national nursing home population (15.5%, 16.5%, 26.4%, 33.8%, and 7.8%, respectively) (χ2 = 36.54, p < 0.001, V = 0.006). Using a crosswalk by Mansbach et al. (2012) to compare BCAT scores with the BIMS (Chodosh et al., 2008), the cognitive measure used in the Nursing Home Compendium, the current sample had a small but statistically significant difference in the composition of none to mild (36%), moderate (28.9%), and severe (35.2%) impairment compared to the national nursing home population (38.7%, 24.8%, and 36.6%, respectively) (χ2 = 11.1, p < 0.01, V = 0.003). The proportion of female residents (63.8%) was not significantly different from the national nursing home population (65.6%) (χ2 = 1.65, p = 0.20, V = 0.001).
Question 1: Does Dementia Disproportionately Affect African American Individuals in Long-Term Care?
Table 1 presents the distribution of dementia levels by race. In the current LTC sample, 71.1% of African American individuals had dementia compared to 63.3% of White participants (7.8% difference). African American individuals had 1.43 times greater odds of dementia than White participants (95% CI [1.05, 1.95], p = 0.02). Among those with dementia (n = 803, 64.8%), 44.7% of African American participants had severe stage dementia (14.4% greater than White participants), whereas 55.3% had mild or moderate levels of dementia (14.4% less than White participants). The odds of having severe dementia compared to a milder stage of the disease were 1.86 times greater for African American than White participants (95% CI [1.31, 2.63], p < 0.001).
Question 2: Do African American Individuals Reach Progressive Dementia Stages at Earlier Ages?
Despite their lower average age, African American individuals were significantly younger at sequential dementia stages than their White peers (F[2, 1233] = 4.93, p = 0.007). Within mild to moderate dementia, African American participants were significantly younger (mean age = 73.48, SD = 11.35 years) than White participants (mean age = 82.24, SD = 9.97 years) by an average of 8.76 years (95% CI [5.42, 12.10], p < 0.001). By severe stage dementia, the difference in age was smaller (4.71 years) between African American (mean age = 79.68, SD = 11.08 years) and White (mean age = 84.39, SD = 8.72 years) participants but remained significant (95% CI [0.71, 8.69], p = 0.01).
Question 3: Are There Racial Differences in Rate of Cognitive Decline?
Figure 1 illustrates the education-adjusted relationship between age and cognition by race using general additive modeling. As reported in Table 2, the model explained 15.2% of the deviance in cognition. The parametric effects of education and race were significant as BCAT scores were significantly lower for African American participants by 4.89 points (95% CI [2.94, 6.04], t = 5.67, p < 0.001) and participants with a high school education or less by 3.07 points (95% CI [1.92, 4.23], t = 5.22, p < 0.001). The relationship between advancing age and cognitive decline was more curvilinear for African American (effective degrees of freedom [EDF] = 2.01, F = 13.2, p < 0.001) than White (EDF = 1.55, F = 66.4, p < 0.001) participants. However, pairwise comparisons of the smooth terms indicated that the rate of cognitive decline did not differ significantly between African American and White participants at any age (p > 0.05).
Smooth term for age and fitted Brief Cognitive Assessment Tool® scores by race, adjusting for education, from the additive model. Shaded regions depict 95% confidence intervals of the estimates.
Summary of a General Additive Model for Age by Race Interaction Predicting Cognition
This is the only study that has investigated disparities in dementia between older African American and White LTC residents. Three central questions were investigated. First, does dementia disproportionately affect African American individuals in these settings? African American participants had 1.43 times greater odds of dementia than their White counterparts. This figure is lower than many reported estimates in community-based studies (Barnes & Bennett, 2014; Chen & Zissimopoulos, 2018; Potter et al., 2009) but generally aligns with Steenland et al. (2016) and confirms an inequity in dementia occurrence among LTC residents. Variations in estimates across studies may be explained by different methodologies and different epidemiological terms (e.g., incidence versus prevalence). Furthermore, the odds of having severe dementia compared with milder stages were 1.86 times greater for African American than White residents. The current findings emphasize the importance of racial disparities at specific cognitive stages, as comparisons at the general syndrome (i.e., dementia) level alone may obscure possible differences based on cognitive severity. Findings also highlight the importance of LTC facilities routinely using cognitive tests that are sensitive to cognitive stages. Although routine testing does not require widespread use of neuropsychological batteries, it points to the utility of brief instruments that are psychometrically stronger than mandated screening tools in U.S. nursing homes (Mansbach et al., 2014).
From a resident-centered care perspective, more specific information about cognitive functioning can help nursing and other facility staff balance safety with resident autonomy and choice. For African American individuals who transition from a nursing home to the community, there may be a higher burden for their unpaid (and typically familial) caregivers. More severe stages of dementia are indeed associated with higher caregiver stress (Fauth et al., 2006). Successful care transitions could be enhanced by providing scaffolded education to unpaid caregivers based on their loved one's specific cognitive levels. Counseling caregivers on effective methods for reducing stress and the nonpharmacological management of BPSD would be valuable for families.
Second, do African American individuals reach progressive stages of dementia at earlier ages? In the current study, African American individuals were significantly younger than their White peers by approximately 9 years within mild–moderate dementia levels and by 5 years at the severe dementia level. The economic and psychological burdens of dementia are positively associated with disease progression and severity level (Germain et al., 2009; Yaffe et al., 2002). Therefore, higher occurrences and earlier onset dementia place disproportionate and cumulative burden on African American residents and paid and unpaid caregivers (Gaskin et al., 2013). Current findings amplify the call by national organizations for policies, clinical interventions, and community programs to minimize the impact of ADRD on African American older adults and their caregivers (Alzheimer's Association, 2003; Gaskin et al., 2013). In the LTC setting, increased awareness of dementia severity associated with age and race can alert staff to individuals' needs and facilitate person-centered initiatives consistent with culture change as expressed through the CMS Hand in Hand program (access https://surveyortraining.cms.hhs.gov/pubs/HandinHand.aspx).
Third, are there racial differences in the rate of cognitive decline? Although the relationship between advancing age and lower BCAT scores was more curvilinear for African American than White LTC residents (Figure 1), significant racial differences in rate of cognitive decline were not evident at any age. African American individuals scored approximately 5 points lower on the BCAT than White participants in the general additive model. Taken together, the findings align with similar studies that found no meaningful differences in rate of decline among community-dwelling older adults (Atkinson et al., 2005; Masel & Peek, 2009; Potter et al., 2009). Because rate of cognitive decline was fairly similar between African American and White older adults, but the starting line of mild-stage dementia was at a younger age for the former group, more research is needed to better understand the causal factors of earlier dementia progression for African American individuals compared to their White peers. The finding that African American individuals enter LTC settings with more severe cognitive deficits and at younger ages at each cognitive impairment level points to the importance of lifelong brain health factors in late-life dementia mitigation (Barnes & Bennett, 2014; Chin et al., 2011; Glymour & Manly, 2008; Yaffe et al., 2013). The current results validate the need for brain health programs targeting African American individuals that have begun to emerge in the community, such as the African American Brain Health Initiative at Rutgers University (access https://brainhealth.rutgers.edu).
Several factors limit conclusions on dementia disparities from the current LTC sample. First, the model of demographic predictors explained only 15% of the deviance in cognition, which highlights the need for research that broadly investigates biopsychosocial dementia risk factors that disproportionately affect African American individuals (Barnes & Bennett, 2014). Future studies should build on the current authors' use of spline-based semiparametric modeling to explore racial disparities because age effects are often non-linear (Chen et al., 2016). Second, although the possibility of racial test bias cannot be ruled out (Aiken Morgan et al., 2010; Chin et al., 2011), the BCAT was selected as the cognitive instrument because it has no apparent disadvantages for African American individuals based on previous studies, and it is widely used in LTC settings. Although education was adjusted in the model, medical diagnosis or cardiovascular risk factors were unable to be controlled. Subsequent studies should include specific health and socioeconomic variables that could help explain or control for cognitive disparities. Third, African American individuals present to medical settings later in the dementia process and underuse LTC relative to White individuals (Barnes & Bennett, 2014), which may have contributed to racial differences in dementia severity. To enhance generalizability to African American and White residents, a large LTC sample was used and key participant characteristics were compared to the national nursing home population. The significant difference in the racial composition may limit the representativeness of the current sample; however, the effect size was small, and the study was more inclusive of African American residents. Finally, longitudinal research is required to understand the causes of dementia disparities observed in this cross-sectional LTC sample.
There is an urgency in the scientific community to understand and rectify the heightened toll of ADRD for older African American individuals and their caregivers. Clearly, the racial disparities in cognitive functioning of LTC residents is an extension of disparities found in the larger community. The timeliness of this issue is critical given demographic projections that the African American older adult population will increase over the next several decades. The racial disparities in dementia identified by the current study highlight targets for leaders in LTC and provide quantifiable benchmarks to evaluate strategies designed to promote health equity.
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Descriptive Statistics of Long-Term Care Residents by Race (N = 1,239)
|White Residents (n = 1,000)||African American Residents (n = 239)|
|Age (mean, SD) (years)||80.28 (10.75)||75.11 (11.28)|
| Female||637 (63.7)||154 (64.4)|
| Male||363 (36.3)||85 (35.6)|
| <6||20 (2)||11 (4.6)|
| 7 to 11||111 (11.1)||30 (12.6)|
| 12||354 (35.4)||97 (40.6)|
| 13 to 15||210 (21)||33 (13.8)|
| 16||168 (16.8)||30 (12.6)|
| 17 to 18||84 (8.4)||25 (10.5)|
| >18||27 (2.7)||3 (1.3)|
| NA||26 (2.6)||10 (4.2)|
| None||367 (36.7)||69 (28.9)|
| Mild–moderate||441 (44.1)||94 (39.3)|
| Severe||192 (19.2)||76 (31.8)|
Summary of a General Additive Model for Age by Race Interaction Predicting Cognition
|Parametric Coefficients||B||SE||t||p Value|
|African American race||−4.49||0.79||−5.68||<0.001|
|Education beyond high school||3.07||0.59||5.22||<0.001|
|Smooth Terms||EDF||RDF||F||p Value|
|Age* [H11003] White race||1.55||1.92||66.36||<0.001|
|Age* [H11003] African American race||2.01||2.54||13.22||<0.001|