Relationships Between Cultural Perspectives and Family Caregiver Burden in the Dementia Population

Abstract

Dementia diagnoses are increasing in the United States, causing impairments across multiple domains of functioning. Informal care provided by family caregivers can benefit those with declining cognitive function. However, this can lead to subjective and objective caregiver burden. As the United States’ population becomes more diverse, literature on these topics does not fully account for cultural characteristics. The current study examined the association between key variables including cultural identity (individualism/collectivism), coping styles, and caregiver burden. A sample of 253 family caregivers of those with dementia (ages 20–78) completed a survey through Prolific, an online research platform. Sociodemographic characteristics consisted of varying racial identities, gender identities, and socioeconomic statuses. Measures included several rating scales, and statistical analyses examined the relationships between these variables. Maladaptive and adaptive coping strategies are important to the dementia family caregiver population in relation to subjective caregiver burden, which has implications for predicting health outcomes. Results demonstrated imperative considerations in the link between individualism and subjective caregiver burden. Follow-up subgroup analyses on three demographic factors displayed supplementary informative patterns. This study is one of the first widespread explorations to move towards understanding the distinctive relationships between sociocultural characteristics of caregivers. These complexities should continue to be examined to help inform effective, yet culturally competent, community-based interventions tailored towards family caregivers managing difficulties presented by a dementia diagnosis. Findings are applicable to concrete clinical directions, and a future study could test an intervention that focuses on increasing adaptive strategies, while decreasing maladaptive strategies.

Keywords

dementia family caregiving individualism collectivism subjective caregiver burden objective caregiver burden maladaptive coping style adaptive coping style

Introduction

Within the United States, dementia affects approximately 7 million people and rates of diagnoses are increasing (Zissimopoulos et al., 2018). Individuals with dementia show impairments across multiple domains of psychological function, including socio-emotional processing, cognitive abilities, and memory retention, which cause disruptions in carrying out activities of daily living (Arvanitakis et al., 2019). Additionally, this population has a higher likelihood of requiring functional assistance with everyday tasks, which is provided by friends and family members approximately 75% of the time (Brodaty, 2009). Family involvement in older adult care has been shown to have a positive impact on individuals needing greater levels of long-term assistance, as there is typically an increased sense of familiarity, social connectedness, and shared decision-making (Lao et al., 2019). For instance, those with a caregiver who was identified as being close to them have lower rates of social isolation and improved quality of life (Gaugler & Kane, 2007).

Family Caregiver Burden

The progression of becoming a family caregiver requires each individual to adapt their role towards providing care, which often comes at the expense of their physical and mental well-being. Current research on this topic has focused on caregiver burden, which is established “as the strain that is experienced by a person who cares for a chronically ill, disabled, or older family member” and primarily has been studied in stroke and cancer patients (Kazemi et al., 2021). A relatively understudied area of research within this field is caregiver burden within dementia, as this disorder creates a significant challenge for informal care. As patients with dementia experience declining cognitive function, their caregivers often have to deal with subsequent effects of increased emotionality, unpredictability, and anger that is common when faced with a dementia diagnosis. When compared to caregivers of patients without dementia, dementia caregivers suffer markedly more burden overall and had higher levels of stress, physical symptoms, and depression (Cheng, 2017). As such, the broad occurrence of caregiver burden within the dementia population is cited as a public health crisis that can lead to negative effects both on the individual and family unit (Etters et al., 2008).

Objective and Subjective Family Caregiver Burden

Family caregiver burden can be conceptualized as consisting of two different components, which can vary as a function of how caregivers experience burden but manifest it in different ways. Objective burden refers to “the inputs relevant with caregiving activities,” (Cao & Yang, 2020) while subjective burden focuses on the “personal feelings generated while performing the caring function” (Yu et al., 2020). In operationalizing these terms, objective burden often manifests in the time spent on caregiving tasks, while subjective burden manifests in the internalized strain (i.e., health and psychological effects) of completing duties on caregivers.

Several studies have identified a positive correlation between subjective and objective burden in family caregivers for dementia (Hughes et al., 2014). Conversely, recent research has also shown that objective burden is not always associated with subjective burden, such that several factors may act as a buffer between experiencing these two types of burden (Cao & Yang, 2020). In a study published by Wang et al. (2016), they found family caregivers with greater social support and financial resources allocated to taking care of a family member (i.e., less objective strain) had significantly lower reported levels of subjective caregiver burden. However, other intrapersonal resources such as one’s cultural identity, perspective on group normative behavior, and level of commitment to taking care of a family member, may serve as additional buffers to experiencing subjective or objective caregiver burden.

Cultural Identity

The United States’ population is becoming more diverse over time, with a growing variety of cultural backgrounds (Perez & Hirschman, 2009). As a reflection of this increased diversity, much of the current research in cultural psychology is focused on the contrasting concepts of individualism and collectivism. Individualist cultures adopt an independent self-construal that values autonomy, personal goal attainment, and individual success. In contrast, collectivist cultures endorse an interdependent self-construal that values harmony, cooperation, and group success (Hofstede, 2011). These varying levels of identity, commonly divided between Western and Eastern cultures, are also prevalent among individuals living in the United States (Vandello & Cohen, 1999).

In research, the terms individualism and collectivism are often interchanged with possessing an independent or an interdependent self-construal, respectively (Giacomin & Jordan, 2017). Theodore Singelis has noted that the strength of an independent or interdependent construal varies within each individual on a continuum (Singelis, 1994), and this viewpoint continues to be conveyed in current literature (Fatehi et al., 2020). The relationships between self-construal and caregiver burden have received qualitative study in the past. Pyke and Bengston (1996) found that families in the Los Angeles area who endorsed higher levels of individualist ideals had greater importance on autonomy, personal achievement, and loose kinship ties. Highly individualistic caregivers in this study may have felt that caregiving obligations were in contrast to their independent self-construal, which would have corresponded to greater self-perceived strain. These individuals perceived their caregiving as being more perfunctory, rather than affectionate, and they were not as likely to put in increased hours or take on more responsibilities than necessary. On the contrary, those endorsing higher levels of collectivist ideals reported that family connectedness fulfilled their emotional needs. For those taking care of a family member based on affection, this form of caregiving is in line with their interdependent self-construal, which may have corresponded to a lower self-perceived strain. This commitment to family-affinity was correlated with a greater number of hours and responsibilities of care (Pyke & Bengston, 1996).

Caregiver Interventions and Coping Styles

Several interventions have been proposed to address caregiver burden experienced by family members of those with neurological disorders (Beinart et al., 2012). Caregivers who identify functional (i.e., problem-focused coping) coping strategies have been shown to have significantly higher quality of life, while caregivers who identified dysfunctional (i.e., avoidance coping) coping strategies had significantly lower quality of life (Rodrígues-Pérez et al., 2017). Similarly, caregivers who engage in maladaptive coping styles (i.e., avoiding aspects of the situation) endorsed more negative effects of stress, depression, and well-being (Waugh et al., 2021). However, as caregiver interventions have not yet been studied with regard to cultural factors, more research is needed to effectively adapt interventions to fit varying cultural identities.

The Current Study

Prior studies have not fully considered the relationship between cultural factors and caregiver burden, which has important public health implications. To address these issues, the current study distributed a nationwide survey to collect data on cultural factors and caregiver burden from various locations throughout the United States. To expand on past research, we included additional demographic factors that are important to consider within the caregiver population. The first aim of the study examined how an individual’s level of individualist cultural identity (i.e., independent self-construal), or collectivist cultural identity (i.e., interdependent self-construal) is related to their experiences of caregiver burden. Therefore, we predicted that participants who scored higher on individualism would also score higher on subjective caregiver burden, but not objective caregiver burden. Contrary, participants who scored higher on collectivism would score higher on objective caregiver burden, but not subjective caregiver burden. The second aim of the study explored how an individual’s coping style (i.e., maladaptive, or adaptive) is related to subjective and objective categories of caregiver burden. Thus, we predicted that participants who exhibited maladaptive coping styles would score higher on subjective and objective caregiver burden. Contrary, participants who exhibited adaptive coping styles would score lower on subjective and objective caregiver burden.

Methods

Measures

Consent and Demographic Form

Informed consent was collected prior to the start of the survey. All participants completed a demographic form at the beginning of the survey that included 10 diverse areas (see Table 1). Collecting this information provided the opportunity to conduct follow-up analyses at a later date.

Table 1.

Sociodemographic Characteristics of Participants (N = 253)

Sample characteristics	n	%	M	SD
Race
American Indian/Alaska native	2	0.80
Asian	23	9.10
Black or African American	27	10.70
White	180	71.10
Multiracial	16	6.30
Self-describe/Other	5	2.00
Ethnicity
Hispanic/Latino/Spanish origin	27	10.70
Not hispanic/Latino/Spanish origin	226	89.30
Gender identity
Woman	148	58.50
Man	99	39.10
Transgender	2	0.80
Non-binary	4	1.60
Annual income (SES)
Under $30,000	46	18.20
$30,000 to $49,999	51	20.20
$50,000 to $74,999	62	24.50
$75,000 to $99,999	31	12.30
$100,000 to $149,999	44	17.40
$150,000 or more	19	7.50
MacArthur SS scalea
1	4	1.60
2	20	7.90
3	26	10.30
4	43	17.00
5	48	19.00
6	60	23.70
7	40	15.80
8	8	3.20
9	3	1.20
10	1	0.40
Age of family caregiver	253	100	42.14	12.56
Age of individual with dementiab^,c	253	100	77.66	9.86
Role of caregiver
Relative	226	89.30
Friend	9	3.60
Partner	3	1.20
Neighbor	11	4.30
Other	4	1.60
Placement
Assisted living	51	20.20
Nursing home	20	7.90
Co-inhabiting	131	51.80
Other	51	20.20
Payment of services
Yes	20	7.90
No	225	88.90
N/A	8	3.20

^aNumbers reflect the MacArthur Scale of Subjective Social Status. Higher numbers reflect an individual viewing themselves as best off in society compared to the general population. Participants were asked to think about money, education, and job placement (Adler et al., 2000).

^b6 participants were excluded in analyses for endorsing an age 3 standard deviations below the mean.

^cScale was statistically transformed to a normal distribution by squaring the original values.

Singelis Self-Construal Scale (SCS)

Cultural identity was measured via the Singelis Self-Construal Scale (SCS), which has been utilized in past studies with established internal consistency. (Singelis, 1994). Singelis et al. (1995) conducted a psychometric evaluation of the SCS and found high construct validity and predictive validity. The Self-Construal Scale includes 30 different items that loaded onto two different scales: an independent self-construal scale and an interdependent self-construal scale, which measured individualism and collectivism, respectively. After reading an item, each participant had 7 options that most closely described how characteristic each element was to them, including a range from 1 = Strongly Disagree to 7 = Strongly Agree. Higher scores on each scale indicated a more independent or interdependent self-construal.

Objective Burden Measure and Zarit Burden Interview (ZBI)

A measure utilized in two prominent studies effectively captured objective burden (Brouwer et al., 2004; Cao & Yang, 2020). Mirroring these findings, time devoted to caregiving was measured by asking participants to input their Total Time Invested in Caregiving (hours/week; Brouwer et al., 2004) and to select tasks from a list of Household Activities and Activities of Daily Life in order to provide examples of what might constitute hours of care.

Subjective burden was measured via the Zarit Burden Interview (ZBI), a validated and reliable subjective burden measure with a high Cronbach alpha of 0.92 (Yu et al., 2020), which includes 22 different items. Additionally, it has been previously validated among caregivers of those with varying mental and physical functioning including dementia-related diagnoses (Yu et al., 2020). After reading an item, each participant had 4 options that most closely described how characteristic each element was to them, indicating a range of 0 = Never to 4 = Nearly Always. Higher scores on this scale indicated higher subjective burden.

Maladaptive and Adaptive Coping Style (MAX) Questionnaire

Exploratory hypotheses were assessed using the Maladaptive and Adaptive Coping Style (MAX) Questionnaire. Several studies have analyzed a cross-cultural comparison using the MAX questionnaire and found it to be valid and reliable on measuring coping styles across cultures (Moritz et al., 2016). The MAX includes 19 different items designated as adaptive coping (9 items) and maladaptive coping (10 items). After reading an item, each participant had 4 options that most closely described how characteristic each element was to them, indicating a range of 1 = Not True to 4 = True. Higher scores on adaptive items indicated higher adaptive coping styles and higher scores on maladaptive items indicated higher maladaptive coping styles.

Recruitment/Compensation

Recruitment of participants took place through Prolific, an online data collection platform established in 2014 at Oxford University to connect researchers and educators with a globally diverse participant pool. This allowed for the opportunity to maximize number of participants with ethical compensation, prescreen inclusionary criteria, and obtain data quickly. In a study published in 2022, researchers assessed the quality of three similar data programs: Mechanical Turk, Prolific, and CloudResearch. They found that, in comparison to the other two platforms, participants on Prolific had higher attention and motivation to give honest answers on questionnaires (Peer et al., 2022). To address the limitations of self-report data, 1–2 attention checks were implemented to test if participants had been paying attention throughout the survey. Additionally, those with significant deviations from estimated competition time were excluded from statistical analyses and received partial compensation. Additionally, a security CAPTCHA combination was included to further bolster internal validity and verify that participants were from the human population. Data collection began on September 29, 2023 and concluded on November 29, 2023.

G*Power Analysis

In order to effectively determine an appropriate sample size and ensure a representative sample, information from Memon et al. (2020) on survey research is included. In examining the sample-to-variable ratio, a ratio of at least 20 participants: one variable is recommended in studies with multiple survey measures (Memon et al., 2020). Therefore, in our main set of hypotheses, it was estimated that a minimum of 140 participants will be needed for meaningful results. Statistical power estimates in G*Power suggested that between 164 and 384 total participants would be needed to observe a small-medium effect size with an alpha of .05 and power of .08 (Faul et al., 2009).

Participants in First Study (Prescreener)

To obtain a sample of informal caregivers, Prolific prescreened participants aged 18–89, who endorsed providing informal caring responsibilities. Of an initial 557 respondents, 264 (47%) subsequently indicated that they were caregivers of patients with conditions other than dementia. As such, 293 respondents were invited to complete the remainder of the study.

Participants in Second Study (Sociodemographic Characteristics)

A total of 253 participants were included in the final sample after accounting for 1 participant who timed-out of the survey and 4 participants who failed both attention checks. An additional 6 participants were excluded in analyses for caring for an individual with dementia whose age was 3 standard deviations below the mean in order to ensure analyses were reported with an accurate diagnosis of dementia. Sociodemographic characteristics are presented in Table 1. Informal caregivers were aged 20-78 (M = 42.14, SD = 12.56), and roles consisted of 226 relatives (89.30%), 11 neighbors (4.30%), 9 friends (3.60%), 4 other (1.60%), and 3 partners (1.20%). Participants provided informal caregiving to individuals aged 50-101 (M = 77.66; SD = 9.86), and most did not receive payment for their services (N = 225; 88.90%). As shown in the table, 131 of caregivers were co-inhabiting with the person with dementia (51.80%), 51 were in assisted living (20.20%), 20 were in a nursing home (7.90%), and 51 indicated the other category (20.20%). A large proportion of the sample identified as White (N = 180; 71.10%), while the remaining participants identified as Black or African American (N = 27; 10.70%), Asian (N = 23; 9.10%), American Indian/Alaska Native (N = 2; 0.80%), and self-describe/other (N = 5; 2.00%). The variable of race was recoded to include a multiracial category based on the number of those endorsing two or more races, which constituted 16 participants (6.30%). These numbers are fairly consistent with the most recent census population estimates (U.S. Census Bureau, 2020). Ethnic identity was collected as a dichotomous variable, with most participants endorsing not Hispanic/Latino/Spanish Origin (N = 226; 89.30%). Regarding gender identity, the sample consisted of 148 women (58.50%), 99 men (39.10%), 4 non-binary (1.60%), and 2 transgender (0.80%). Socioeconomic status (SES) was measured by an individual’s annual income and placement on the MacArthur Scale of Subjective Social Status in order to operationalize SES by a combination of several determinants (Antonoplis, 2023). In relation to annual income, distributions were the following: under $30,000 (N = 46; 18.20%), $30,000–$149,000 (N = 188; 74.40%), and $150,000 or more (N = 19; 7.50%). Additionally, compared to the middle point of how an individual views their placement in society (N = 48; 19%), 112 participants (44.30%) viewed themselves as better off in society and 93 participants (36.80) viewed themselves as worst off in society.

Procedures

The Institutional Review Board approved our online survey on September 14, 2023. Respondents gave written consent for review and were able to click “I consent to participate in this study” before starting the survey. All participants who provided consent completed a demographic form, after which they were directed to complete scale measures and attention checks. Across all scales, participants were required to answer each question before moving forward. Additionally, the order of all scale measures were randomized through Qualtrics prior to releasing the final survey on Prolific. Participants finished the survey by reading a description of study objectives and researcher contact information.

Statistical Analyses

Following data collection, descriptive statistical analyses were applied to participant demographic characteristics and for each subsequent scale. Outliers were identified for removal if they fell more than 3 standard deviations from the mean. For variables that were not normally distributed, statistical transformations were applied to satisfy parametric statistical test assumptions. To statistically analyze the relationships between variables, we ran separate bivariate correlation models through SPSS Version 28 software. Follow-up analyses consisted of selecting multiple demographic variables and breaking them into subgroups. After this process, several one-way between-subjects ANOVAs and independent samples t-tests were run to analyze group differences.

Results

Descriptive Statistics and Correlations for Study Variables

A series of bivariate correlation analyses were conducted among the primary scales, as shown in Table 2. Overall, variables were correlated in ways predicted by previous literature. However, several interesting patterns were observed. The individualism and collectivism subscales had a weak, but significant positive correlation (r = .132, p < .05), demonstrating that participants who exhibit independent values also hold interdependent ideals. Notably, objective caregiver burden (hours/week) and subjective caregiver burden were moderately correlated, which is consistent with past research (r = .301; p < .01). The average number of hours providing weekly care (i.e., Household Activities and Activities of Daily Life) was calculated as 21.06 hours (SD = 19.88).

Table 2.

Descriptive Statistics and Correlations for Study Variables

Variable	n	M	SD	1	2	3	4	5	6
1. Objective caregiver burden (Hours/Week)^a	253	21.06	19.88	—	.301**	−.089	.069	−.040	.022
2. Subjective caregiver burden	253	40.19	15.22	.301**	—	−.170**	.064	.289**	−.219**
3. Individualism subscale	253	75.66	11.62	−0.089	−.170**	—	.132*	−.257**	.460**
4. Collectivism subscale	253	71.74	12.05	.069	.064	.132*	—	.073	.195**
5. Maladaptive coping style	253	25.54	6.47	−0.040	.289**	−.257**	.073	—	−.431**
6. Adaptive coping style	253	28.15	4.34	.022	−.219**	.460**	.195**	−.431**	—

*p < .05. **p < .01. The bolded values within the table reflect statistically significant p-values.

^aScale was statistically transformed to a normal distribution by applying a logarithm to original values.

Self-Construal and Caregiver Burden

To evaluate the relationship between a participant’s level of individualist cultural identity (i.e., independent self-construal), or collectivist cultural identity (i.e., interdependent self-construal) and varying types of caregiver burden, bivariate Pearson correlations were computed. Contrary to our expectations, findings demonstrated a negative correlation between individualism and subjective caregiver burden (r = −.170; p = < .01, see Figure 1), and a non-significant relationship with objective caregiver burden. The association between collectivism and both subjective and objective caregiver burden was found to be non-significant.

Coping Styles and Caregiver Burden

To test the exploratory association between an individual’s coping style (i.e., maladaptive, or adaptive) and varying types of caregiver burden, bivariate Pearson correlations were conducted. In line with our expectations, there was a positive correlation between maladaptive coping style and subjective caregiver burden (r = .289; p = < .01, see Figure 2), but a non-significant relationship with objective caregiver burden. Findings revealed a negative correlation between adaptive coping style and subjective caregiver burden (r = −.219; p = < .01, see Figure 3), but a non-significant relationship with objective caregiver burden.

Follow-Up Analyses

After examining a large number of non-significant relationships in the main analyses, follow-up analyses were focused on several demographic variables within the dataset to help explain possible variance in the data. These variables were selected as race, gender identity, and subjective social status, as past literature looking at the combination of these factors and caregiver burden is prevalent. An examination of ANOVA and t-test analyses were performed to test for group mean differences.

Race Subgroup Analyses (One-Way, Between-Subject ANOVAs)

Subgroup analyses were performed using the racial groups that had sufficient numbers, which consisted of the White subgroup (N = 180), Black or African American subgroup (N = 27), Asian subgroup (N = 23), and multiracial subgroup (N = 16). The results found that there was a significant difference in individualism between groups (F(5, 247) = 5.184, p = < .001. A Tukey’s HSD post-hoc analysis showed that the mean value of individualism was significantly different between several racial groups: (1) Black or African American and White (p < .001), (2) Black or African American and Asian (p < .001), and (3) Black or African American and multiracial (p = .002). However, non-significant differences between racial groups were found in subjective and objective caregiver burden, collectivism, maladaptive coping style, and adaptive coping style.

Gender Identity Subgroup Analyses (Independent Samples T-tests)

Subgroup analyses were run with a women subgroup (N = 148) and a men subgroup (N = 99). The results found that there was a significant difference in subjective caregiver burden (t(245) = 2.431; p = .016) between women (M = 42.03) and men (M = 37.27). Furthermore, there was a significant difference in objective caregiver burden (t(245) = 3.762; p = < .001) between women (M = 24.80) and men (M = 16.02). Additionally, a significant difference was discovered in individualism (t(245) = −2.494; p = .007) between women (M = 74.24) and men (M = 77.98). However, non-significant differences between gender identity groups were found in collectivism, maladaptive coping style, and adaptive coping style.

Subjective Social Status Subgroup Analyses (Independent Samples T-tests)

The variable of subjective social status included 10 groups, which utilized the MacArthur Scale of Subjective Social Status to reflect how a participant viewed themselves in society compared to the general population (Adler et al., 2000). However, to achieve a roughly equal number participants in each variable, we decided to run analyses by omitting the middle point (5) and grouping placements in a low group (1–4; N = 93) and a high group (6–10; N = 112) to achieve a roughly equal number participants in each classification. The findings revealed a significant difference in subjective caregiver burden (t(203) = −4.010; p < .001) between the low group (M = 45.35) and the high group (M = 36.91). Additionally, a significant difference was demonstrated in objective caregiver burden (t(203) = −3.971; p < .001) between the low group (M = 26.33) and the high group (M = 17.85). In relation to coping styles, there was a significant difference in maladaptive coping (t(203) = 3.579; p < .001) (1–4; M = 27.26) (6–10; M = 24.10) and adaptive coping (t(203) = −3.670; p < .001) (1–4; M = 26.94) (6–10; M = 29.09) between the two groups. Similarly, the low group (M = 71.67) and the high group (M = 78.67) significantly differed in individualism (t(203) = 4.444; p < .001).

Discussion

Neuropsychological research has recently begun to incorporate a broader range of perspectives in shaping an individual’s subsequent behaviors and emotions. As part of this trend, the current study examined a novel area of research to explore the association between sociocultural factors and varying forms of caregiver burden in an expansive range of locations throughout the United States.

Self-Construal and Caregiver Burden

Contrary to initial predictions, individualism was found to be negatively associated with subjective caregiver burden. As research examining this association is limited, there are several proposed reasons that might help to explain this finding. First, individualist culture tend to adopt an independent self-construal that values autonomy, personal goal attainment, and individual success (Hofstede, 2011). When taking care of another individual, their behaviors are more likely motivated by potential self-benefit, as they may experience greater admiration from other people (Hartmann et al., 2017). Subsequently, engaging in caregiving responsibilities might lead to enhanced positive emotions, which could lower the amount of internalized strain. To support this perspective, a recent study investigating cultural identity and altruism found that those who classified as individualists had a higher likelihood of helping others to advance their self-driven goals, in comparison to collectivists, which increased emotions of happiness (Weiss-Sidi & Riemer, 2023). To apply these findings to the current study, it may be plausible that individualists experienced greater freedom to choose what care responsibilities they take on and how they manage their time to align with their own objectives, thus reducing subjective caregiver burden. More research in this area is needed, particularly as caregiving can be part of one’s individual identity and may also contribute to one’s sense of responsibility and contributions.

Surprisingly, there was no significant relationship found between participants who endorsed higher interdependent ideals and number of hours providing care. A potential explanation for this finding might relate back to the measure selected to operationalize objective burden. We attempted to maintain consistency by mirroring a past study conducted by Brouwer et al. (2004) that instructed participants to input their estimated hours based on a list of Household Activities and Activities of Daily Life. However, this measurement may have led to an inaccurate reflection of care (i.e., overestimating or underestimating hours), which could also explain why this variable lacked a normal distribution. To add to this rationale, respondents’ scores on subjective caregiver burden and objective caregiver burden mutually increased, showing that someone could display elevated levels in both areas of burden.

Coping Styles and Caregiver Burden

In line with expectations, participants who endorsed more dysfunctional methods for coping (i.e., escape-avoidance, blaming, masking) reported higher subjective caregiver burden. This result expands upon evidence by Waugh et al., 2021 that demonstrated caregivers who employed greater maladaptive strategies experienced more negative outcomes, such as an increase in stress and clinical symptoms. In the current study, participants who endorsed more functional methods reported lower internalized strain. This result fits in with previous research that has examined adaptive methods, including information seeking and problem solving, as a preventative measure in decreasing psychological and physical stress (Rodrígues-Pérez et al., 2017). To expand on these two findings, the Coping Complexity Model was conceptualized in 2016, which included additional factors related to maladaptive and adaptive coping methods such as distinct stressors, timing, and resilience traits (Hudson, 2016). In the current results, it is possible that a caregiver may apply these strategies differently depending on the specific situation, which can change over time and exert influence on the valence of subjective burden.

Contrary to predictions, objective caregiver burden was not found to be associated with either type of coping styles. It is well known that taking care of an individual with dementia is a particularly demanding undertaking, as there is minimal respite from responsibilities (Etters et al., 2008). As such, the amount of time spent caregiving for dementia patients is likely to be driven primarily by the needs of patient, rather than the coping styles of the caregiver.

Follow-Up Analyses

Race

Within the Black or African American racial subgroup, a follow-up ANOVA revealed that these participants were significantly higher in individualism compared to several other racial identities. Therefore, it could be plausible that a large presence of Black or African American individualists in the data could be driving the observed relationships. It is notable that the link between this racial group and individualism is particularly unexpected, as past work has consistently shown this population to be highly interconnected and tends to prioritize group values over the self (Coon & Kemmelmeier, 2001). This finding is important to explore in greater detail, as Black or African American individuals may not always align with interdependent ideals, and could place even more emphasis on upholding self-enhancing values rather than providing objective care responsibilities.

Gender Identity

Similar to prior studies, the frequency of female caregivers in the sample was noted to be higher in comparison to male caregivers. Women often assume responsibilities as caretakers in a manner that aligns with traditional gender roles in certain cultures (Xiong et al., 2020). Consequently, a t-test analysis found that the women in the current sample were significantly higher on measures of self-reported subjective and objective caregiver burden compared to men. This offers further evidence that women experience more negative health outcomes, are more likely to later develop a clinical disorder, and provide care in excess of normal expectation due to increased pressure of upholding societal expectations (Yee & Scglz, 2000).

Subjective Social Status

To build upon this area of research, socioeconomic status (SES) was operationalized by a subjective social status prompt, which has been shown to be a reliable and valid method in predicting successive health outcomes (Shaked et al., 2016). Members of the low SES group in the current sample were significantly higher on measures of self-reported subjective and objective caregiver burden compared to the high SES group. This finding supports past findings that those who perceive themselves as having a lower subjective social status may not have access to available community resources to counteract experienced burden (Li et al., 2023). Markedly, these considerations may also relate to our finding that those in the lower SES group endorsed a greater maladaptive coping style and a lower adaptive coping style in comparison to those in the higher group. In line with these results, a study published in 2007 found that those deemed lower in socioeconomic status reported more adverse emotion-focused strategies due to a perception of having limited control over the ability to change their current situation (Caplan & Schooler, 2007).

Limitations

The use of a validated online platform, Prolific, allowed for the opportunity to expeditiously collect large-scale data from various locations throughout the United States. Yet, a 2018 study found that a majority of participants registered with Prolific are educators and researchers (Palan & Schitter, 2018). As such, the current sample may not accurately reflect the general population of caregivers, as these individuals could have increased access to additional resources (i.e., finances) and differing points of view.

Since its conceptualization over 30 years ago, the Singelis Self-Construal Scale (SCS) has not undergone a major revision. Accordingly, participants may have responded to questions that did not consider current 21st century attitudes on individualism and collectivism, which have been expanded to include contemporary viewpoints (Fatehi et al., 2020). Additionally, the current study only measured one form of objective caregiver burden (hours), in line with prior research. This decision to disregard other secondary objective factors (i.e., caregiver finances) could have limited analyses by not fully measuring all aspects of the construct.

Although a diverse sample of demographic variables were included to expand findings, the classification of dementia was not collected. This omission has been shown to be impactful in research, with previous research depicting that Lewy body disease (LBD), mixed-type dementia, and frontotemporal dementia (FTD) showing higher levels of caregiver burden compared to other forms of dementia (Huang et al., 2022). As a result of this exclusion, the present study is unable to draw conclusions and cannot add to established research in a way for which varied dementia diagnoses could be contributing to subjective and objective caregiver burden. Therefore, caution should be given when generalizing results to the broad population of individuals with dementia as we do not know the precise diagnostic makeup included in the study sample.

Future Directions

The novelty and cultural importance of this study underscores the need for the combination of these variables to be examined in future research. It would be beneficial to conduct a small focus group of dementia family caregivers, prior to survey creation, to ensure that measure items have been appropriately considered and revised accordingly. In this study, the varying levels of individualist versus collectivist identity focused on participants living in the United States due to previous empirical evidence of regional associations in these characteristics (Vandello & Cohen, 1999). However, we found that respondents’ scores on individualism and collectivism were positively correlated, indicating that someone could display elevated levels of both independent ideals and interdependent ideals. To determine how individual items mapped onto individualism and collectivism in the Singelis Self-Construal Scale (SCS), a subsequent confirmatory factor analysis could be conducted to understand if these variables are highly interconnected to decide if this is the appropriate measure to choose in reference to the construct.

The present study identified several demographic variables that should be highlighted in an extension of this future study. Notably, the key distinctions between the placement of the individual with dementia (e.g., co-inhabiting vs. living outside of the home) and the role of the caregiver (e.g., neighbor vs. relative) are important areas to consider, especially as this could impact the primary relationships between cultural identity and varying types of caregiver burden.

Conclusion

The current study has explored a relatively underacknowledged area of neuropsychology that follows the intersection of sociocultural factors and caregiver burden across the United States. As highlighted in this study, researchers and clinicians can utilize these findings to build on our understanding of how to apply a diversified perspective on caregiver burden and ultimately move towards reducing negative outcomes.

Footnotes

Acknowledgements

The authors thank Dr. Jeffrey Gfeller, Dr. Madeline Stenersen, and Dr. Eddie Clark for their guidance and support throughout the duration of this project.

ORCID iDs

Payton Adams

David A. S. Kaufman

Ethical Approval

The Institutional Review Board at Saint Louis University approved our online survey (approval: 33545) on September 14, 2023.

Consent to Participate

Respondents gave written consent for review and were able to click “I consent to participate in this study” before starting the survey.

Author Contributions

All authors were involved in formulating the study concept, data analysis, and interpretation of findings. Payton Adams created and managed the collection of data on Prolific. Both authors reviewed the final manuscript prior to submission.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article. This work was supported by Saint Louis University (Stolle Award).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The datasets generated during and/or analyzed during the current study are not publicly available due to restrictions with the affiliated institution, but are available from the corresponding author on reasonable request. This study was not preregistered prior to conducting the research.

Author Biographies

Payton Adams is a PhD student in Clinical Neuropsychology for the Cognitive and Affective Psychophysiology (CAP) Lab at Saint Louis University. She graduated with a M.S. in Clinical Psychology in May 2024. Her research currently focuses on family caregiving within neurological disorders, aging, and neuropsychological assessment processes across diverse populations. She is working to connect neuropsychology and health equity to better adapt manualized interventions. Payton can be contacted at payton.adams@health.slu.edu.

David A. S. Kaufman, PhD, ABPP, is a Clinical Neuropsychologist, Associate Professor of Psychology at Saint Louis University, and Clinical Graduate Director. As head of the CAP Lab, his research examines neuropsychological outcomes in research with a focus on neurodegenerative diseases. He teaches several courses on fundamentals of neuropsychology and neuropsychological assessment, and is active in the clinical training of doctoral students. Dr. Kaufman can be contacted at david.kaufman@health.slu.edu.

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