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. 2024 May 21;64(7):gnae052. doi: 10.1093/geront/gnae052

Performance of the Modified Caregiver Strain Index in a Sample of Black and White Persons Living With Dementia and Their Caregivers

Carolina Pereira-Osorio 1,✉, Emily Brickell 2, Bern Lee 3, Beth Arredondo 4, Robert John Sawyer 5
Editor: Joseph E Gaugler
PMCID: PMC11181709  PMID: 38769644

Abstract

Background and Objectives

This study examined the performance of the Modified Caregiver Strain Index (MCSI) in a sample of Black and White caregivers of persons living with dementia.

Research Design and Methods

Data on 153 dyads enrolled in the Care Ecosystem dementia care management program were analyzed, including sociodemographic variables, dementia severity, and caregiver burden and wellbeing. Factor structure, item-response patterns, and concurrent validity were assessed across racial groups.

Results

Differences between Black and White caregivers included gender, dyad relation, and socioeconomic disadvantage. Factor structure and item loadings varied by racial cohort, with parameters supporting a 3-factor model. For Black caregivers, finances and work, emotional and physical strain, and family and personal adjustment items loaded together on individual factors. For White caregivers physical and emotional strain items loaded on separate factors, although personal and family adjustment items loaded with work and financial strain items. Item-level analysis revealed differences between groups, with Black caregivers endorsing physical strain to a greater degree (p = .003). Total MCSI scores were positively correlated with concurrent measures like the PHQ-9 (White: r = 0.67, Black: r = 0.54) and the GAD-2 (White: r = 0.47, Black: r = 0.4), and negatively correlated with self-efficacy ratings (White: r = −0.54, Black: r = −0.55), with a p < .001 for all validity analysis.

Discussion and Implications

The MCSI displayed acceptable statistical performance for Black and White caregivers of persons living with dementia and displayed a factor structure sensitive to cultural variations of the construct. Researchers results highlight the inherent complexity and the relevance of selecting inclusive measures to appropriately serve diverse populations.

Keywords: Caregiver burden, Cross-cultural research, Diversity and ethnicity, Factor analysis, Major neurocognitive disorder

Background and Objectives

Differences in the experience of caregiving have been reported across cultural and racial backgrounds. Some have found Black caregivers report less burden and more positive appraisals of caregiving (Pinquart and Sörensen, 2011), although others highlight stressors in the health care settings, financial strain, and comorbid health as conditions disproportionately impacting Black caregivers when compared with their White counterparts (Karah et al., 2022; Kuzmik et al., 2023). Regarding caregivers of people living with dementia, some studies show no differences in the perception of caregiving across racial groups (Scott et al., 2020), although others suggest Black caregivers experience less burden and increased psychological wellbeing (Kosberg et al., 2007; Pereira et al., 2021). An updated systematic review and meta-analysis evidenced lower physical and psychological burden for Black caregivers and higher strain ratings for White caregivers (Liu et al., 2021). Alternatively, mixed-methods research has reported increased burden levels for Black caregivers despite obtaining low burden scores and high quality-of-life ratings on measures (Moss et al., 2018). Stress factors are thought to include financial strain, physical health, and safety concerns (McLennon, 2018). It is also argued that the concept of burden may be incongruent with cultural values in the Black community, contributing to underreporting (Brewster et al., 2020; Dilworth-Anderson et al., 2020).

The Short-Form Zarit Burden Interview (ZBI-12; Bédard et al., 2001) and the Modified Caregiver Strain Index (MCSI; Thornton & Travis, 2003) are two of the most commonly used measures to assess caregiver burden in dementia. Although limited, and not without controversy, research on the performance of the ZBI-12 has shown adequacy of the measure for caregivers of varied gender, educational (Lin et al., 2017), and racial backgrounds (Longmire & Knight, 2011). Rather little has been published about the performance of the MCSI in dementia and diverse sociodemographic backgrounds. To date, only one study by Kuzmik et al. (2023) has looked at the factor structure, measurement invariance, and predictive validity of the MCSI in a group of Black and White caregivers.

This study aimed to contribute to the literature on cross-cultural caregiver burden by exploring the performance of the MCSI in a cohort of Black and White caregivers of persons living with dementia in New Orleans, Louisiana, and surrounding areas. Researchers specifically looked at factor structure, item response patterns, and concurrent validity. In addition to age, sex, and education, researchers included socioeconomic status and health literacy as covariates due to their association with Alzheimer’s disease and related dementias (Dilworth-Anderson et al., 2020; Li et al., 2023) and in an effort to account for Louisiana’s culturally and socioeconomically heterogeneous landscape (U.S. Census Bureau, n.d.). This approach aligns with the Cultural Equivalence Model, which suggests differences in socioeconomic status drive variations in performance between cultural groups (Whitfield et al., 2008).

Research Design and Methods

Participants

Persons living with dementia and their caregivers, together dyads, enrolled in one site of the Consortium Care Ecosystem Program from January to July 2023 were included in this analysis. Persons living with dementia were aged 55 or older, had an established dementia diagnosis in their medical records, lived in the community as opposed to a nursing home or assisted living facility, had an emergency department or hospital encounter in the year prior to enrollment, and a caregiver willing to participate in the program. Participants with nonprogressive dementia diagnoses or who received dementia care management three months prior to enrollment date were excluded. Diagnoses were provided by primary care providers, neurologists, or neuropsychologists. Caregivers were 18 years or older and had primary level of responsibility for the person living with dementia. Exclusion criteria included hired caregivers who were paid for their services. Consent was obtained from the person living with dementia or by their legally authorized representative. The central IRB for the study reviewed and approved the research protocol.

Self-reported sociodemographic information, including age, sex, and race/ethnicity, was collected following National Institute on Aging of the National Institutes of Health guidelines (Table 1). Out of 23 Hispanic White caregivers, 10 reported Spanish as their preferred language and were excluded from this study due to the lack of validation of the MCSI in Spanish-speaking populations. The final sample consisted of 153 dyads with complete baseline data. Overall, persons living with dementia and caregiver groups were predominantly female (67.5% and 77%, respectively) and had at least 12 years of education. Average age was 79 years (SD = 7.6, Range = 59–99) for the first and 60 years (SD = 12, Range = 25–89) for the latter. An almost 1:1 ratio, with 88 (57.8%) White and 65 (42.2%) Black dyads, was observed with no inter-racial dyads (Table 1).

Table 1.

Sociodemographic Data for Persons Living With Dementia and Caregivers by Racial Group (N = 153)

Persons living with dementia demographics White (N = 88) Black or African American
(N = 65)		 p-Value Cohen’s d Phi- coefficient
Age, M (SD) 80(8) 79(8) .21 0.13 –
Sex, Female N(%) 53(60) 51(79) .01* – 0.2
Education level N(%) .19 – 0.18
 <12 years 12(14) 12(18) – –
 12 years 32(36) 26(40) – –
 >12 years 44(50) 25(39) – –
 Prefer not to say 0 2(3) – –
ADI, State Rank Categories N(%) .004* – 0.27
  Group 1 49(56) 21(32) – –
  Group 2 28(32) 24(37) – –
  Group 3 11(12) 20(31) – –
Caregiver demographics (N = 88) (N = 65)
Age, M(SD) 61(13) 58(10) .17 0.13 –
Sex, Female N(%) 61(69) 58(89) .002* – 0.24
Education level N(%) .39 – 0.14
 <12 years 2(2) 4(6) – –
 12 years 14(16) 10(15) – –
 >12 years 72(82) 50(77) – –
 Prefer not to say 0 1(2) – –
Health literacy, N(%) .29 – 0.15
 Extremely confident 48(55) 32(49) – –
 Quite a bit 29(33) 24(37) – –
 Somewhat 10(11) 8(12) – –
 A little 0(0) 1(2) – –
 Not at all 1(1) 0 – –
Relation to patient, N(%) .003* – 0.32
 Spouse/Domestic partner 32(36) 12(18) – –
 Daughter 35(40) 43(66) – –
 Son 16(18) 3(5) – –
 Other family 3(3) 3(5) – –
 Other 2(2) 4(6) – –
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Notes: ADI = Area Deprivation Index; SD = standard deviation

*p < .05. **p < .001.

Procedure

The Care Ecosystem is a comprehensive dementia care management program offering support to persons living with dementia and their caregivers (Possin et al. 2017). Dyads are assigned a Care Team Navigator (CTN) and enrolled for 12 months (Figure 1). Participants receive monthly check-ins from their assigned CTN—an unlicensed but dementia trained coordinator—to identify needs and provide tailored support.

Figure 1.

Alt Text: Care ecosystem program 12-month timeline and list of care protocols.

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Care ecosystem program protocol.a COVID-19 = coronavirus disease 2019. aAdapted from care ecosystem protocol.

Data were collected from caregivers at baseline (soon after consent), 6-months, and 12-months into the program. Repeated measures included the Quick Dementia Rating System, Neuropsychiatric Inventory Questionnaire, Modified Caregiver Strain Index, Generalized Anxiety Disorder-2, Patient Health Questionnaire-9, and a Self-Efficacy measure. This study was cross-sectional and analyzed baseline data only.

Measures

Health Literacy Question

The Health Literacy Question is a single-item evaluation. Participants rate how confident they feel filling out medical forms by themselves, using a 5-point Likert scale (“Extremely,” “Quite a bit,” “Somewhat,” “A little bit,” “Not at all”). A response of “Somewhat” or less indicates inadequate health literacy. The question had adequate classification accuracy when compared with established measures like the Short Test of Functional Health Literacy in Adults (AUROC = 0.74 [95% CI: .69–0.79]) and the Rapid Estimate of Adult Literacy in Medicine (AUROC = 0.84; [95% CI: .79–0.89]; Chew et al., 2008).

Area Deprivation Index (ADI)

The ADI is designed to rank neighborhoods, at the state and national levels, by socioeconomic disadvantage using data from the American Community Survey and U.S. Census Survey (Kind and Buckingham, 2018). This measure considers factors like income, education, employment, and housing quality, to determine the level of socioeconomic disadvantage in the population and has an association with Alzheimer’s disease pathology (Powell et al., 2020). This study used state ranks, which are available in deciles from 1 to 10. Researchers categorized deciles into three groups according to sample distribution: Group 1 (deciles 1–3) Group 2 (deciles 4–6), and Group 3 (deciles 7–10).

Quick Dementia Rating System (QDRS)

The QDRS is a semistructured informant-based measure designed to stage cognitive and functional decline and screen for mild cognitive impairment or dementia. It includes 10 domains: memory and recall, orientation, decision making and problem solving, activities outside of the home, function at home and hobbies, toileting and personal hygiene, behavior and personality, language and communication, mood, and attention and concentration. Scores range from 0 to 30, with higher scores indicating more severe decline. Strong concurrent validity (r = 0.81, p < .001) and adequate internal consistency (α=0.86–0.93) has been reported for the QDRS when correlated with the Clinical Dementia Rating Scale (Galvin, 2015).

Neuropsychiatric Inventory Questionnaire (NPI-Q)

The NPI-Q is a 12-item questionnaire designed for evaluating the presence and severity of dementia related behaviors, such as delusions, hallucinations, irritability, and nighttime behaviors. Caregivers rate the severity of the behavior (“mild,” “moderate,” “severe”) and their level of distress related to each neuropsychiatric symptom (“no distress,” “minimal,” “mild,” “moderate,” “severe,” and “very severe/extreme”), with higher scores indicating increased severity and distress (Cummings, 1997). The NPI-Q showed adequate convergent validity (ranging from 0.8 and 0.94 for total symptom and distress scores, respectively) and interscale correlation (0.91 for severity total and 0.92 for distress total) with the original Neuropsychiatric Inventory total score (Kaufer et al., 2000).

Modified Caregiver Strain Index (MCSI)

The MCSI is a 13-item self-report measure assessing caregiver strain. It includes five domains of caregiver burden: physical, psychological, financial, social, and personal. The index provides a list of elements caregivers have found to be difficult and uses a 3-point Likert scale to score each item (“no,” “yes-sometimes,” “yes-on a regular basis”). Scores range from 0 to 26, with higher scores indicating increased strain. The MCSI has shown adequate internal (α=0.90) and test–retest reliability (r = 0.88; Thornton and Travis, 2003).

Generalized Anxiety Disorder-2 (GAD-2)

The GAD-2 uses the first two items of the GAD-7 to assess the presence and severity of Generalized Anxiety Disorder (Spitzer et al., 2006). Caregivers rate the frequency of anxiety symptoms in the past two weeks using a 4-point Likert scale, with scores ranging from 0 to 6. The GAD-2 has been found to have a sensitivity of 86% (95% CI: .76–0.93) of and specificity of 83% (95% CI: .80–0.85) at a cutoff score greater than or equal to 3 (Kroenke et al., 2007).

Patient Health Questionnaire-9 (PHQ-9)

The PHQ-9 is a 9-item self-report measure used to screen for Major Depressive Disorder. Scores range from 0 to 27 and severity is determined using the following cutoff values: minimal (0–4), mild (5–9), moderate (10–14), moderately severe (15–19), and severe (20–27). Internal reliability for the scale was tested during two different studies, both showing adequate consistency (α=0.89 and 0.86; Kroenke et al., 2001).

Care Ecosystem Caregiver Self-Efficacy Scale (CGSE)

This 5-item scale assesses perceived levels of resource knowledge, social support, and confidence managing caregiving challenges. Caregivers rate whether they strongly agree, agree, feel neutral, disagree, or strongly disagree with each statement. Total scores range from 0 to 20, with higher scores suggesting more self-efficacy (Merrilees et al., 2020). No validity or reliability data have been reported in the literature. For this sample, researchers obtained adequate internal consistency (α=0.75).

Statistical analyses

All analyses were performed using IBM SPSS Statistics (V.28) and statistical significance was set at 0.05. Descriptives and frequencies were used to characterize the sample. Chi-squared, independent sample t-test, and Kruskal–Wallis were used to compare racial categories on sociodemographic, clinical, and caregiver wellbeing measures. Principal Component Analysis (PCA), using Oblimin rotations, and Kruskal–Wallis were conducted to explore factor structure and item response patterns by racial category. Sample size criteria for PCA (minimum of five cases per item) was met for both racial cohorts. Concurrent validity was assessed using Pearson correlations.

Results

Sociodemographic data for each racial group are presented in Table 1. Gender distribution was significantly different for persons living with dementia (Female; White = 60%, Black = 79%, p = .01) and caregivers (Female; White = 69%, Black = 89%, p = .002), with a higher proportion of females in the Black group. Caregivers of Black persons living with dementia were more likely to be daughters, and caregivers of White persons living with dementia were more likely to be partners/spouses, daughters, or sons. Additionally, Black dyads were more likely to live in neighborhoods with higher levels of socioeconomic disadvantage, according to the ADI state ranking. There were no other sociodemographic differences between groups. Post hoc power calculations revealed statistical power above 80% for significant sociodemographic differences between groups. Health literacy was high for both White and Black caregivers, with 88% and 86%, respectively, rating themselves “quite a bit confident” and “extremely confident.” Total MCSI scores were not different across racial groups.

Dementia due to Alzheimer’s disease was the most common diagnosis (35%), followed by unspecified dementia (31%), other types of dementia (15%, including Primary Progressive Aphasia, Dementia with Lewy Bodies, and Frontotemporal Dementia), Vascular Dementia (14%), and Multiple/Mixed Dementia (5%). Significant diagnostic differences were found between racial categories [X2(4) = 13.58, p = .009]. Black persons living with dementia were more likely to be diagnosed with Vascular (21.5%) and Multiple/Mixed Dementia (9%). White persons living with dementia were more likely to be diagnosed with unspecified dementia (35% vs 25%) or other types of dementia (19% vs 9%). Overall, dementia stage was mild to moderate, and there were no significant differences between racial groups, as measured by the QDRS or any of the NPI-Q subscales regarding dementia related behaviors (Table 2).

Table 2.

Clinical Information by Racial Group for Persons Living with Dementia and Caregivers (N = 153)

White (N = 88) Black or African American (N = 65) p-Value Cohen’s d
QDRS, M (SD) 13.6(6.1) 13.9(6.3) .42 −0.03
NPI, M (SD)
 Total score 23.5(16) 24.6(16.1) .34 −0.07
 Severity 10.6(6.8) 11.2(7.2) .29 −0.09
 Distress 13(9.6) 13.4(9.5) .38 −0.05
Self-efficacy, M (SD) 13.7(3.6) 13.8(3.7) .45 −0.02
MCSI, M (SD) 13.8(5.8) 13.6(5.6) .34 0.07
GAD-2 2.51(2.1) 2.26(1.8) .45 0.12
PHQ-9, M (SD) 5.3(5.4) 5.3(4.3) .46 0.02
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Notes: ED = emergency department; QDRS = Quick Dementia Rating Scale; NPI-Q = Neuropsychiatric Inventory Questionnaire; MCSI = Modified Caregiver Strain Index; GAD-2 = Generalized Anxiety Disorder-2; PHQ-9 = Patient Health Questionnaire-9.

*p < .05. **p < .001.

Principal component analyses (PCA) for the MCSI were conducted by racial category. The overall Kaiser–Meyer–Olkin for each group indicated adequate sampling (White = 0.86, Black = 0.80). Bartlett’s test of sphericity was also significant for each racial category (p < .001), suggesting that the data were factorizable. The PCA for White caregivers revealed a three-factor structure that explained 38.8%, 9.9%, and 8.4% of the total variance, respectively. For the Black caregiver group, the PCA revealed a four-component structure that explained 35.9%, 11.4%, 9.6%, and 8.4% of the total variance, respectively. For both groups, all components had eigenvalues greater than one, as evidenced in the scree plot (Supplementary Figures 1 and 2 in the Supplementary Material) and met the interpretability criterion.

Factor structure and item loadings for each racial group are presented in Table 3. Items related to finances and work, emotional and physical strain, and family and personal adjustment loaded together on individual factors in the Black caregiver group. On the other hand, for the White caregiver group, physical and emotional strain loaded on separate factors, although personal and family adjustment belonged to the same component as work and financial strain. Only one cross-loading was observed for the White caregiver group, in contrast to the Black caregiver group where cross-loadings were noted for four items (6–8 and 13; Table 3). PCA were re-run, constraining the model to three factors, in an attempt further explore cross-loadings. Statistical parameters supported these constrained models. Shifts in factor loadings were noted for items 6 and 13, with the latter one still presenting significant cross-load between factors 1 and 2 (Table 4).

Table 3.

Pattern Matrix for PCA with Oblimin Rotation by Caregiver Racial Category (N = 153)

Item Item description White Black
1 2 3 1 2 3 4
1 My sleep is disturbed 0.87 0.549
2 Caregiving is inconvenient 0.548 0.887
3 Caregiving is a physical strain 0.7 0.512 0.3
4 Caregiving is confining 0.391 0.431 0.766
5 There have been family adjustments −0.588 −0.859
6 There have been changes in personal plans −0.678 0.357 −0.479
7 There have been other demands on my time −0.699 0.527 −0.484
8 There have been emotional adjustments 0.71 0.487 −0.362
9 Some behavior is upsetting 0.809 0.762
10 It is upsetting to find the person I care for has changed so much from his/her former self 0.672 −0.329 0.783
11 There have been work adjustments −0.885 0.847
12 Caregiving is a financials train −0.594 0.852
13 I feel completely overwhelmed 0.647 0.408 0.552
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Notes: PCA = Principal Component Analysis. In bold are the values that more strongly contribute to a particular principal component.

Table 4.

Pattern Matrix for PCA with Oblimin Rotation for Black Caregivers, Constrained to Three Factors (N = 65)

Item Item description Black
1 2 3
1 My sleep is disturbed 0.387
2 Caregiving is inconvenient 0.907
3 Caregiving is a physical strain 0.355 0.344
4 Caregiving is confining 0.783
5 There have been family adjustments 0.541
6 There have been changes in personal plans 0.469
7 There have been other demands on my time 0.500
8 There have been emotional adjustments 0.611
9 Some behavior is upsetting 0.802
10 It is upsetting to find the person I care for has changed so much from his/her former self 0.847
11 There have been work adjustments 0.870
12 Caregiving is a financial strain 0.783
13 I feel completely overwhelmed 0.481 0.457
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Notes: PCA = Principal Component Analysis. In bold are the values that more strongly contribute to a particular principal component.

Kruskal–Wallis tests were performed to explore item-level differences in MCSI scores between groups. Black caregivers endorsed item 3 (“caregiving is a physical strain”) to a greater degree than White caregivers (p = .003). Item 9 (“some behavior is upsetting”) approached significance (p = .06), suggesting that White caregivers might endorse this item more than their Black counterparts. A post hoc power analysis for the above item-level findings suggested limited statistical power (10.6% and 5.8%, respectively).

The MCSI total score for both caregiver groups was strongly correlated in a positive direction with concurrent measures like the PHQ-9 [White: r(152) = 0.67, p < .001; Black: r(152) = 0.54, p < .001] and the GAD-2 [White: r(152) = 0.47, p < .001; Black: r(152) = 0.4, p < .001], and in a negative direction with Self-Efficacy levels [White: r(152) = −0.54, p < .001; Black: r(152) = −0.55, p < .001]. Levene’s test for equality of variances did not reveal statistically significant between-groups differences in variance for Health Literacy, the MSCI, QDRS NPI total, severity, and distress scores, and Self-Efficacy (all p-values >.05). Variance differed between groups for the PHQ-9 [F(1, 151) = 4.36, p = .04] and caregiver age [F(1, 151) = 4.58, p = .03]. As planned performed analysis were robust to violations of the assumption of equal variances and the PHQ-9 was primarily used for concurrent validity, correction for unequal variance was deemed unnecessary.

Discussion and Implications

Researchers examined the performance of the Modified Caregiver Strain Index (MCSI) in a sample of Black and White caregivers of persons living with dementia. Primarily, researchers looked at factor structure for Black and White caregiver groups and explored item-response patterns to further assess performance. Black and White caregiver cohorts had similar sample sizes and no significant differences in terms of age, level of education, health literacy, and dementia severity. The groups were also similar in their report of depression, anxiety, and distress. Differences were observed for gender distribution, caregiver relation to the person with dementia, and ADI index between the racial cohorts. Total MCSI scores were not different by race or ADI ranking.

Researchers finding on differences in caregiver gender distribution and relation to patient are consistent with cross-cultural literature reporting that Black caregivers are more frequently daughters (Pinquart and Sörensen, 2005; Roth et al., 2007). Some suggest this is an artifact of studying caregivers in a dyadic fashion, failing to understand family and intergenerational dynamics unique to the Black community (Brewster et al., 2020). Others attribute race-gender differences to cultural norms, role expectations, and historic factors (Cohen et al., 2019; Leopold et al., 2014). Researchers also identified significant differences in diagnostic prevalence, with Black participants being diagnosed with Vascular Dementia in a greater proportion than their White counterparts. Other research has highlighted this diagnostic pattern, pointing at increased cardiovascular risk factors (Lennon et al., 2021), lower socioeconomic status, provider bias, and limited or late access to specialized care as factors to consider (Chen and Zissimopoulos, 2018; Chen et al., 2016; Findley et al., 2023). Furthermore, White participants in our sample were more frequently diagnosed with other types of dementia (including Primary Progressive Aphasia, Frontotemporal Dementia, and Lewy Body Dementia) when compared with Black participants. This result reiterates differences in biopsychosocial risk factors and access to specialized care. White persons living with dementia potentially had less confounding vascular pathology and received a diagnosis at earlier stages when it is easier to discriminate between types of dementia (Davis et al., 2022). It is also possible that this racial group had better access to diagnostic exams (Lin et al., 2021).

Cross-cultural differences also exist in the perception of caregiver burden between Black and White caregivers. Findings in the literature are mixed, with studies suggesting one- (Chan et al., 2013) and two-factor solutions (Kuzmik et al., 2023; Ribeiro et al., 2019), warranting a closer look at the suitability of caregiver burden scales in multi-cultural settings (Brewster et al., 2020). Researchers results indicated appropriate statistical parameters for a three-factor model for White caregivers, and a three- and four-factor model for Black caregivers. A subsequent constrained model supports a three-factor solution for both groups. Increased strain scores for both cohorts appropriately correlate with depression and anxiety symptoms, although inversely correlating with self-efficacy levels (Jennings et al., 2015).

Caregiver burden is defined as the perception of strain in multiple dimensions including physical, emotional/mental, and financial strain, among others (Bom et al., 2019; Liu et al., 2020). Consequently, a measure of caregiver burden should inevitably assess more than one factor. Researchers results, in favor of a three-factor model for both groups, are supported by statistical and theoretical parameters.

  • White caregiver group: Factor 1—Perception of Burden (2, 4, 8, 9, 10, 13); Factor 2—Adjustment (5, 6, 7, 11, 12); Factor 3—Impact on Health (1, 3).

  • Black caregiver group: Factor 1—Perception of Burden (2, 3, 4, 7, 13); Factor 2—Adjustment (1, 5, 8, 9, 10); Factor 3—Occupational/Financial Stressors (6, 11, 12).

Item loadings for Factors 1 and 2 evidence differences in cultural values. Although both groups share feelings of inconvenience and confinement, the perception of burden (Factor 1) seems to be more strongly influenced by emotional strain for the White caregiver group and by physical strain for the Black caregiver group. This pattern has been found by others, reporting a more negative view on caregiving by nonminority groups, and increased caregiving demands by Black caregivers (Fabius et al., 2020; Pinquart and Sörensen, 2005). Furthermore, researchers results indicate that physical strain was more likely to be endorsed by the Black cohort, consistent with studies indicating that adult child caregivers experience worse physical strain (Badana et al., 2019). Other considerations include cultural values and attitudes toward adversity, which are acquired and maintained through racial socialization, and can affect the perception of caregiving across cultures (Roth et al., 2015). This, along with gender socialization, may influence the meaning of the caregiving role and of terms like “strain” or “burden” for different groups (Dilworth-Anderson et al., 2002). Socioeconomic status is also a relevant factor. In this study, there were a greater percentage of Black individuals with socioeconomic disadvantage, potentially limiting the availability of community-based resources and ability to hire care. Further analyzing this matter is outside of the scope of researchers data but warrants attention in future research.

Adjustment (Factor 2) in the White caregiver group seems to be related to social, familial, and occupational stressors, although emotional adjustment is central for Black caregivers. Experts in cross-cultural research have reported on cultural norms, familialism, and roles in the Black community, with caregiving being an expectation rather than a disruption (Brewster et al., 2020; Dilworth-Anderson et al., 2002). A study by Roth et al. (2015), specifically showed that Hispanic and Black caregivers reported more positive aspects associated with caregiving, with Black caregivers disproportionately endorsing items about having positive attitudes towards life. Therefore, it was not surprising that the perception of burden (Factor 1) for this racial group was not composed of items related to emotional or family adjustment, but these were instead grouped under Factor 2.

Item loading variations in researchers results might elucidate differential factors of caregiver burden across racial groups. Researchers findings specifically suggest that the caregiver’s sex and relation to patient influence the perception of burden, which can be observed in Factor 3. For instance, physical strain and sleep disturbance loaded together for the White caregiver group, which was primarily comprised of female spouses. This is consistent with studies suggesting that spousal caregivers experience higher levels of psychological and physical burden compared with other family caregivers (Bom et al., 2019; Pinquart and Sörensen, 2011). Potential factors such as increased hours of caregiving per week, more years spent in the caregiver role, and cohabiting with the person with dementia, are thought to explain this finding. Spouse caregivers are also older and may have more physical frailty of their own that influences their rating of physical burden. On the other hand, financial strain, work adjustments, and changes in personal plans were grouped together for the Black caregiver group, where a greater proportion of the caregivers were daughters. This result highlights unique stressors that seem to depend on the caregiving relationship (Pinquart and Sörensen, 2011). Others have also suggested a moderation effect by type of relationship and stated that adult children face more occupational/financial stressors when having to balance caregiving with job responsibilities (Badana et al., 2019). Although outside the scope of this study, researchers believe that there is likely an intersection between race, resources, and relationship type that should be further examined.

This study faced several limitations. First, researchers results are not generalizable due to the lack of randomization and researchers sample being limited to a specific region of the United States. Second, the sample size was limited for item-level analysis, therefore underpowering some of researchers findings. Third, the use of self-reported measures of burden and other clinical variables may lead to the analysis of subjective data. Moreover, the MCSI was developed primarily with White individuals, limiting construct validity for the Black caregiver population. Nonetheless, researchers feel this study is a step in the right direction and hope to expand future analyses using nationwide data from the Care Ecosystem Consortium.

In conclusion, this study reports on differences in caregiver burden among Black and White caregivers of persons living with dementia. Researchers emphasize that such disparities occur in the context of cultural factors and suspect a moderation effect by the caregiver’s sex, type of dyadic relation, and access to socioeconomic resources. The MCSI displays adequate psychometric properties to assess burden in a sample of Black and White caregivers of people living with dementia and seems to capture cultural variations of the construct in its factor structure. However, researchers results also highlight the inherent complexity and the relevance of selecting inclusive measures to appropriately serve our increasing diverse population.

Future research should follow Whitfield and colleague’s (2008) recommendation to shift from a Cultural Equivalence Model to a Cultural Variant Model by: (a) studying the intersectionality between race, socioeconomic disadvantage, and type of caregiving relationship at an item-level; (b) performing within-group comparisons to capture the variability in the experience of caregiving for persons living with dementia for different ethnic and racial groups; (c) implementing mixed-method validation studies to build on construct validity and identify the influence of covariates (i.e., disadvantage, cultural values, history) and; (d) utilizing qualitative studies to obtain person-centered information from caregivers with different ethnic and racial backgrounds to better conceptualize burden or aspects of burden not captured by the MCSI, more closely aligning with the sociocultural framework.

Supplementary Material

gnae052_suppl_Supplementary_Materials
gnae052_suppl_supplementary_materials.docx (63.5KB, docx)

Contributor Information

Carolina Pereira-Osorio, Ochsner Health, Center for Brain Health, New Orleans, Louisiana, USA.

Emily Brickell, Ochsner Health, Center for Brain Health, New Orleans, Louisiana, USA.

Bern Lee, Ochsner Health, Center for Brain Health, New Orleans, Louisiana, USA.

Beth Arredondo, Ochsner Health, Center for Brain Health, New Orleans, Louisiana, USA.

Robert John Sawyer, Ochsner Health, Center for Brain Health, New Orleans, Louisiana, USA.

Funding

This work was supported by the National Institute on Aging of the National Institutes of Health [Grant Number R01AG074710]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

None.

Data Availability

This study was not pre-registered, and data are not publicly available. This might be considered in the future.

Author Contributions

Carolina Pereira Osorio (Conceptualization [Lead], Data curation [Lead], Formal analysis [Lead], Investigation [Equal], Methodology [Lead], Project administration [Equal], Writing—original draft [Lead]); Emily Brickell (Conceptualization [Equal], Data curation [Equal], Formal analysis [Equal], Investigation [Equal], Methodology [Equal], Project administration [Equal], Supervision [Equal], Writing—review & editing [Equal]); Bern Lee (Supervision [Equal], Writing—review & editing [Equal]); Beth Arredondo (Supervision [Supporting], Writing—review & editing [Supporting]); Robert John Sawyer (Conceptualization [Equal], Data curation [Equal], Formal analysis [Equal], Investigation [Equal], Methodology [Equal], Project administration [Equal], Supervision [Equal], Writing—review & editing [Equal])

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

gnae052_suppl_Supplementary_Materials
gnae052_suppl_supplementary_materials.docx (63.5KB, docx)

Data Availability Statement

This study was not pre-registered, and data are not publicly available. This might be considered in the future.

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