Caregiving as Work: A Qualitative Study of Dementia Caregiving Among Mexican American Families Using SEIPS 3.0

Abstract

Background: Informal dementia caregiving constitutes a substantial yet underrecognized form of work that places significant demands on family caregivers. Mexican American families, who experience disproportionate dementia burden and structural barriers to care, often rely on intensive family-based caregiving. While prior research has examined cultural values, stigma, and resource barriers separately, less attention has been paid to how these factors interact within a work system to shape caregiver burden. Objective: We characterized informal dementia caregiving among Mexican American families as work performed within a sociotechnical system, and examined how work system components interact to shape caregiver outcomes using the Systems Engineering Initiative for Patient Safety (SEIPS) 3.0 framework. Methods: We conducted semi-structured interviews with 15 Mexican American dementia caregivers in a U.S.-Mexico border community. Using constructivist grounded theory, we analyzed informal caregiving as work embedded within everyday contexts through the SEIPS 3.0 lens. Analysis examined interactions among person characteristics, caregiving tasks, organizational supports, tools and resources, and the broader cultural and linguistic environment. Findings: Caregiving labor was sustained by strong cultural commitment but its structure limited delegation and support access. Cultural beliefs framing care as a non-delegable family responsibility, stigma inhibiting disclosure, demanding physical and emotional labor, language barriers restricting organizational access, and uneven distribution of care within families collectively imposed burden on individual family members, most often daughters or wives. Caregivers actively sought information and resources, yet system-level barriers constrained utilization. These interacting conditions produced predictable outcomes: exhaustion, declining health, and burnout. Conclusions: Viewing dementia caregiving as work clarifies why relationally meaningful care becomes unsustainable without supportive systems. Caregiver burden emerges from interactions within the caregiving work system rather than isolated cultural or individual factors. This perspective highlights stigma reduction and language-concordant services as key intervention leverage points through system-level approaches that sustain family caregiving without relying on individual endurance.

Keywords

dementia caregiving work system Mexican American SEIPS human factors

Introduction

Informal dementia caregiving constitutes a substantial form of labor—amounting to 19 billion hours annually in the United States, valued at $413 billion (Alzheimer’s Association, 2025)—yet it is rarely studied as such. Family caregivers assist with physical activities of daily living, manage medications, coordinate care across providers, and respond to behavioral symptoms, tasks paralleling formal healthcare work in complexity and consequence. Despite this, informal dementia caregiving research has predominantly adopted psychological or medical lenses, examining depression (Yaffe, 2002), coping mechanisms (Parker et al., 2025), and disease progression (Chiao et al., 2015), while largely obscuring the work system factors that shape caregiver experiences and outcomes. This framing gap carries particular consequences for populations bearing disproportionate caregiving burden.

Latinos face a disproportionate dementia burden: 1.5 times higher prevalence than non-Hispanic Whites, longer disease duration, and diagnosis delays averaging four years due to normalization of memory loss as aging and stigma surrounding mental illness (Alzheimer’s Association, 2025; Haan et al., 2003; Hellis & Mukaetova-Ladinska, 2022; Kenning et al., 2017; Rawat et al., 2024; Schrauf & Iris, 2012). Hispanics develop clinical symptoms of AD/ADRD and other comorbidities nearly seven years earlier than non-Hispanic Whites, and the projected rise in AD within the Hispanic population is expected to be the most significant among all ethnic groups (Rawat et al., 2024; Sehar et al., 2023). Mexican Americans, the largest U.S. Latino subgroup, respond to this burden through intensive family caregiving (Min & Barrio, 2009; Rote et al., 2015). Yet, despite representing an estimated 19% of US dementia caregivers, Mexican Americans comprise less than 10% of participants in caregiving research (Garcia et al., 2024; Hellis & Mukaetova-Ladinska, 2022; Marquez et al., 2022; Parveen et al., 2018; Rodríguez & Perales‐Puchalt, 2023; Salazar et al., 2024). Understanding what shapes their caregiving experience requires examining the cultural and structural context in which this labor occurs, particularly given the higher risk of poor financial health in this community while providing care (del-pino-Casado et al., 2011; Mage et al., 2024).

Cultural values do not operate as simple predictors of caregiver outcomes; they function as interacting forces that shape caregiving in contradictory ways. Familismo, a cultural value that emphasizes strong loyalty, responsibility and emotional closeness to the family, motivates intensive family involvement (Aranda et al., 2021) but discourages formal support-seeking creating tension between duty and burden (Gelman, 2014; Martinez & Acosta Gonzalez, 2022; Perlick et al., 2007). While strong familismo correlates with reduced depression, researchers warn against assuming family networks should substitute for formal services (Apesoa-Varano et al., 2015; Martinez & Acosta Gonzalez, 2022; Martinez et al., 2024; Yaffe, 2002). Values like marianismo, a cultural belief that idealizes women as self-sacrificing nurturing and devoted to family obligations affect caregiving roles, creating tension between familial duty and burden while avoiding formal support (Jaldin et al., 2023; Mehdipanah et al., 2022, 2025; Mendez-Luck & Anthony, 2016; Mendez-Luck et al., 2008, 2020). Respeto, a cultural value that emphasizes showing respect through deference and acknowledgement of social roles toward authority figures promotes deference to healthcare providers while limiting advocacy; personalismo, a cultural value that emphasizes warm, personal and trusting relationships, and dignidad, which emphasizes dignity, self-respect and the inherent worth of every individual, favor home care even when institutional support might reduce strain (Ch’en et al., 2024; Perlick et al., 2007).

Stigma and cultural beliefs about dementia create additional barriers. Research has documented that even if the person with dementia were placed in institutional care, Latino caregivers would still maintain vigilant oversight, thereby preserving their values of family care and obligation (Turner et al., 2015). This form of vigilance that does not decline with institutional placement may be an even greater issue for Hispanic populations (Turner et al., 2015). Cultural values differentially influence the caregiving experience and caregivers’ subsequent ability to cope, with choice and use of coping strategy as well as the coping strategies available being influenced by cultural values (Balbim et al., 2019). Stigma framing dementia as craziness or divine punishment delays diagnosis and isolates families (Hinton et al., 2005; Vickrey et al., 2006). These values intersect with structural barriers—limited Spanish-language resources (Cooper et al., 2017; Dalpai et al., 2016), financial constraints (Mage et al., 2025), fragmented and limited access to culturally relevant services (American Association of Retired Persons & National Alliance for Caregiving, 2020; Ch’en et al., 2024; Mariscal et al., 2025; Skufca & Rainville, 2021)—producing caregiving conditions that no single cultural or structural variable can explain. This complexity suggests that understanding Mexican American caregiving requires analytical approaches capable of modeling how system components interact.

Human factors engineering offers such an analytical work systems modeling approach, positing that worker well-being, performance and safety emerge from interactions among system components (Carayon et al., 2014). The Systems Engineering Initiative for Patient Safety (SEIPS) model conceptualizes work within a sociotechnical system of persons, tasks, tools and technologies, organization, and environment interacting to shape processes and outcomes (Carayon et al., 2006; Holden et al., 2013). While SEIPS has been applied to formal healthcare work, only one study (Werner et al., 2022) has applied selected SEIPS elements to informal caregiving in white caregivers, and none have examined Latino populations. Whether SEIPS can illuminate the culturally specific dynamics shaping Mexican American caregiving remains untested. This absence of a work systems modeling approach reflects a broader pattern: existing literature characterizes individual determinants of Latino caregiver experiences but examines them in isolation. Familismo appears as a depression predictor; language barriers appear as obstacles to service use; finances appear as a stressor. Rarely do studies analyze how these factors interact within a unified work system to produce burden. Cultural values, economic impacts, and policy frameworks remain underexplored among Mexican American families than among non-Hispanic white or aggregate Latino populations (Mehdipanah et al., 2022; Mendez-Luck & Anthony, 2016). This fragmented approach obscures intervention points and leaves unresolved ongoing debates over whether cultural values mitigate or exacerbate stress among Mexican American caregivers (Falzarano et al., 2022; Mendez-Luck et al., 2020). Resolving these questions requires understanding how these factors function together in caregiving work systems.

This study addresses two questions: (1) How do person, task, tool, organizational, and environmental factors interact within dementia caregiving systems among Mexican American families? (2) What work system configurations impose care burden on caregivers? Using qualitative methods informed by SEIPS 3.0, we characterize the dementia caregiving work system among Mexican American families in a U.S.-Mexico border community. Rather than examining cultural beliefs, structural barriers, or care tasks as isolated variables, we analyze how these elements function as a work system producing caregiver outcomes. This work systems approach reveals how factors interact to impose caregiving burden on individual family members and identifies intervention points. By reconceptualizing caregiving as a multidimensional social and economic phenomenon influenced by cultural values and structural inequities (Domínguez-Guedea & Garcia, 2015; Escandón, 2011; Evans et al., 2017), this analysis responds to calls for culturally grounded interventions that currently lack empirical validation in Latino populations (Cardoso-Arias & Ramirez, 2024; Neidre et al., 2025). We first describe the SEIPS 3.0 framework and study methods, then present findings organized by work system component, and conclude with implications for intervention design and caregiving policy.

Methods

This study uses a qualitative design for directed content analysis and the Standards for Reporting Qualitative Research (SRQR) guidelines (Supplement File 1) as the reporting framework (O'Brien et al., 2014).

Qualitative Approach and Research Paradigm

We conceptualize informal dementia caregiving as work within a sociotechnical system, drawing on the SEIPS 3.0 framework (Carayon et al., 2020). This reframing, consistent with a constructivist approach to culturally situated meaning-making (Charmaz, 2024), positions caregivers as workers whose characteristics and resources shape care; care tasks have physical, cognitive, and emotional demands; family networks and services form the organizational context; and cultural norms, language, and community resources comprise the external environment. This reframing from “caregiving experience” to “caregiving work system” enables analysis of system interactions producing outcomes such as burden and burnout, a lens we apply here to examine caregiving among Mexican American families in the US-Mexico border region.

Researcher Characteristics and Reflexivity

The team includes investigators with expertise in human factors engineering, dementia caregiving, and Mexican American health; three team members are native Spanish speakers and bilingual (Spanish-English) and have conducted prior qualitative research with Latino populations. Our human factors background shaped our interest in work systems analysis and influenced our interpretation of caregiving as labor. Reflexive discussions addressed how these perspectives might affect data collection and interpretation, while remaining open to participants’ framings.

Context and Setting

The study was conducted in a U.S.-Mexico border community in West Texas with a Mexican American population, high bilingualism, strong cultural ties to Mexico, and documented disparities including later-stage dementia diagnosis, lower specialty care utilization, and higher caregiver burden compared to non-border regions (Ekren et al., 2025). Border regions are understudied despite evidence that geographic context shapes caregiving experiences (Garcia et al., 2024; Kindratt et al., 2023; Rojas-Álvarez & Bokun, 2025; Zacher et al., 2023). This setting was selected for its cross-border family networks, limited specialty care, and cultural practices reflecting Mexican heritage and U.S. acculturation that may intensify caregiving work system dynamics.

Recruitment and Sampling Strategy

Participants were recruited through purposive sampling via partnerships with the local Alzheimer’s Association chapter, healthcare clinics, and community organizations to reach diverse caregivers (Cotton et al., 2023; Nadash, 2024). Eligible participants were adults (≥18 years) who identified as Mexican American or Hispanic/Latino and served as primary caregiver for a family member or friend with dementia. We did not restrict the caregiver’s relationship to the person with dementia (spouses, adult children, siblings) to reach caregivers varying in relationship to care recipient, caregiving duration, and acculturation level. Recruitment continued until thematic saturation was achieved (N = 15) (Charmaz, 2024).

Ethical Considerations

This study was approved by the University of Texas at El Paso Institutional Review Board (Protocol # 2292685-3). Participants provided written consent before interviews and could skip questions or stop at any time. All participants received local caregiver support resources after interviews. Authors LT and JGM de-identified all transcripts by removing names and identifying details; de-identified data were stored on password-protected university servers accessible only to the research team.

Participants

Recruitment yielded 15 caregivers (14 female, 1 male), aged 22-86 years, with household incomes from $13,000 to $37,000. All participants identified as Mexican American and lived in the same metropolitan border region. Care recipients included spouses (n = 3), parents (n = 6), siblings (n = 1), other relatives (n = 2), and friends (n = 3). Consistent with research documenting daughters’ central role in Mexican American caregiving (Evans et al., 2017; Longoria et al., 2020), our sample mainly comprised adult daughters caring for parents. Duration of caregiving ranged from 6 months to 25 years.

Data Collection

Semi-structured interviews were conducted between February 2024 and September 2025 in participants’ preferred language (Spanish or English) by bilingual research team members, as conducting interviews in participants’ non-dominant language reduces narrative depth and may introduce concept distortion in caregiving research (Manzo et al., 2025; Mendez-Luck & Anthony, 2016). A semi structured interview guide was developed by the research team and informed by SEIPS components while remaining open to emergent themes. Questions explored: caregiving activities (tasks), resources and challenges in obtaining support (organization and tools), cultural and community factors (environment), and personal experiences and well-being (person factors and outcomes). Example questions included: “Walk me through a typical day of caregiving”; “What resources have you tried to access, and what has that experience been like?”; “How does your family or community view dementia and caregiving?”; and “How has caregiving affected your own health and well-being?” Probes explored connections between topics (e.g., “How do those cultural expectations affect whether you ask for help?”). Interviews were audio-recorded with consent, transcribed verbatim, and Spanish interviews were translated to English by bilingual team members with back-translation verification of key passages. Interviews lasted 60 to 90 minutes.

Data Processing and Analysis

Transcripts were verified by LT, JGM, and AP, de-identified, and imported into MAXQDA 24. Data were analyzed using directed content analysis (Hsieh & Shannon, 2005; Saldana, 2025), a deductive approach in which existing theory guides analysis, with the SEIPS 3.0 work system components serving as the organizing framework.

We developed a codebook using SEIPS 3.0. Two researchers [JGM and AK] independently coded three transcripts using the deductively-derived codebook. After each transcript, coders met with a third researcher [AP] to compare coding, discuss discrepancies, and reach consensus on codes and segment boundaries. This iterative team-based review refined the codebook and established shared interpretive standards, consistent with consensus-based approaches to qualitative reliability (Hill et al., 2005; Miller et al., 2022; Shuman et al., 2021). Following calibration, the remaining twelve transcripts were divided between coders for independent analysis. Throughout coding, the research team [JGM, AK and AP] met weekly throughout the six-month coding period to ensure consistent code application and discuss emergent patterns. This team-based approach prioritizes negotiated agreement over statistical inter-rater metrics, which methodologists argue are less appropriate for interpretive qualitative research focused on meaning and context (McDonald et al., 2019).

The coding team mapped focused codes to SEIPS 3.0 components through consensus discussion: Person (caregiver and care recipient characteristics, including familismo that research identifies as central (Mendez-Luck & Anthony, 2016), Tasks (care activities), Tools and Technology (information and physical resources), Organization (formal support systems), External Environment (cultural, linguistic, community context), Processes (care work activities), and Outcomes (caregiver and care recipient outcomes). Coding yielded 1,704 coded segments.

After coding, the research team [JGM, AK, and AP] reviewed coded segments and code distributions across transcripts. Codes appearing in at least 10 of 15 interviews were prioritized for theme development. Through discussion, we evaluated recurring codes for theoretical relevance to work system dynamics and contribution to understanding system component interactions affecting caregiver outcomes. Through this process, we grouped and refined codes sharing conceptual relationships within or across SEIPS components, yielding the themes characterizing the caregiving work system.

Techniques to Enhance Trustworthiness

Credibility was supported through prolonged data engagement (repeated transcript readings over 6 months), investigator triangulation (multiple researchers coding), and reflexive team discussions. Dependability was supported by an audit trail of analytic decisions. Transferability was enhanced through detailed description of community demographics, recruitment venues, and participant characteristics. Member checking was conducted by an author [ML], a former Director of the local Alzheimer Association Chapter, who reviewed all themes and representative quotations, confirming that findings reflected patterns she had observed in more than 14 years of work with local dementia caregivers.

Findings

Our work systems lens applied to dementia caregiving showed how multiple factors, previously studied separately, function together to produce caregiver outcomes. The caregiving work system in Mexican American families is characterized by: (1) worker characteristics (Person) that sustain care commitment but inhibit support-seeking; (2) demanding physical and emotional Caregiving Tasks; (3) organizational supports that remain underutilized despite efforts to access them; and (4) environmental barriers that limit resource access. These work system components interact to focus caregiving burden on one worker, typically a daughter or wife, until burnout occurs. We present findings by SEIPS components, emphasizing their function as an interconnected system rather than isolated factors.

Worker Characteristics

Cultural Commitment and Constrained Help-Seeking

Caregivers consistently framed dementia care as a non-delegable family responsibility rooted in cultural values of obligation and family loyalty. Caregiving was described not as work that could be shared or transferred, but as an extension of marital or filial identity. One caregiver explained, “I see it as part of our marriage” (P01). A daughter stated, “It’s a responsibility…because she’s my mom. I can’t just put her in one place” (P10).

Several caregivers explicitly connected these beliefs to Mexican American cultural identity, particularly resistance to institutional care. One participant who had cared for both parents with dementia described refusing facility placement even when clinicians recommended 24-h supervision:

I think it’s Hispanic culture…you don’t want to put your loved one in a nursing home… I took care of my parents… And I was the only one… Even though the doctor said he needed 24-hour care, I said, ‘I can take care of him” (P11).

Family-based care was framed as both moral obligation and indicator of care quality: “No one can take care of them the way you take care of them” (P09). At the same time, some caregivers acknowledged the burden such expectations create. One participant reflected, “It’s an old tradition…that you have to end up taking care of your parents. But it’s hard on the person. It's hard to leave your life and have to take care of somebody” (P05).

Stigma Inhibiting Help-Seeking and Disclosure

Stigma surrounding dementia further constrained the caregiving system by inhibiting disclosure. Dementia was frequently framed as “craziness,” limiting discussion even within families. One caregiver recalled growing up hearing people say, “Oh, she’s crazy,” only later realizing the person likely had dementia (P11). Another described family members dismissing symptoms: “They say, ‘ay no le hagas caso, está loca [don't pay attention to her, she's crazy]” (P08). Privacy concerns also shaped disclosure decisions: “…Mexican-Americans do not want to let other people know if you're sick…they want to keep it to themselves, like, quiet, hush, hush” (P05). One caregiver explained that only immediate family knew about the diagnosis to avoid embarrassment and discomfort for the care recipient (P01).

Self-Reliance as Default Work Orientation

Self-reliance emerged as a default orientation toward caregiving work. Several caregivers reported rarely asking for help: “I really don’t ask for help” (P02) and “I don’t ask unless I can’t do it on my own anymore” (P03). One explicitly linked this tendency to cultural identity: “I’m Hispanic. We deal with it ourselves” (P14). However, some caregivers described learning to accept assistance over time, particularly when resources were introduced through trusted or culturally familiar channels, suggesting these worker characteristics are modifiable rather than fixed: “So over the last two years, I’ve gotten more comfortable asking people to help me” (P06); “The only help I needed was...cleaning the house. Because I hate a dirty house” (P11).

Caregiving Tasks

Physical and Emotional Labor

Caregiving tasks encompassed both intensive physical labor and substantial emotional work. Physical care included bathing, dressing, feeding, toileting, transferring, and continuous supervision, with demands intensifying as dementia progressed. One caregiver described a daily routine involving bathing, grooming, feeding, and mobilizing her mother while managing resistance and fatigue (P09).

Physical labor was compounded by safety concerns and comorbidities. One caregiver described managing fall risk and mobility for a heavy-set parent while negotiating resistance to assistive devices:” She weighed 200 pounds...there's no way I'm going to be able to pick her up if she falls… So I said you need a walker...she said I'm not that old that I need a walker” (P05). Others described managing multiple chronic conditions alongside dementia, increasing the complexity and volume of daily care tasks (P13).

Invisible Emotional Labor

Emotional labor constituted a significant and largely invisible component of caregiving work. Caregivers described managing delusions, redirecting agitation, absorbing accusations, and maintaining emotional stability. One daughter described the relational and emotional toll of managing accusations and defending her caregiving work to family members:

She told my brother that I stole money from her. And that’s not right. I showed him. I said, ‘I don’t steal money.’ I’ve always been on the bank account. Why steal it now? So I got my notebook and I said, ‘How much did mom tell you I stole?’ She said $1,300. And I said, ‘That was for painting the house.’ You guys don’t know a lot of things that I’m going through” (P07).

Other caregivers described the cumulative strain of managing altered realities: “After a while, I forget where I’m at because I’ve told so many lies” (P06). Emotional work also involved constant vigilance and patience: “He gets upset suddenly…I try to be patient with him” (P01). Caregivers additionally described providing comfort and affection as part of daily care: “I scratch her back…give her a massage…and a kiss” (P09). This emotional labor accumulated over time and was difficult to share or redistribute.

Organizational Context

Active Seeking Amid Limited Access

Caregivers actively sought information, education, and formal supports. Participants described attending programs, workshops, and conferences to learn how to better care for their loved ones: “I am attending these programs...I want to learn more about what I can do, what I can’t do, and I want to be prepared” (P01). Despite these efforts, most reported limited ongoing organizational support: “Well, right now I’m not receiving any resources. Nothing” (P02).

Financial eligibility rules and insurance restrictions frequently limited access to services. One caregiver described being denied home care because her mother’s modest savings exceeded eligibility thresholds: “I tried getting her home care. But I was telling her, you have money in the bank, you don't qualify…you have to have $2,000 or less in the bank to qualify.” (P05). Another explained that insurance would cover skilled services but not supervision or respite care (P06). Some caregivers perceived discrimination in access to resources, further constraining support (P13).

These findings indicate that limited utilization reflected organizational and policy barriers rather than lack of caregiver motivation or awareness.

External Environment

Language Barriers as Added Work

Language barriers emerged as a critical environmental constraint shaping caregiving work. Caregivers described difficulty accessing Spanish-speaking providers and Spanish-language materials. One caregiver explained that she accompanied her husband to all medical appointments to interpret because the neurologist did not speak Spanish: “I have always accompanied him on appointments, because the neurologist does not speak Spanish… they have their pamphlets, all in English.” (P01).

This language discordance added cognitive and emotional work while affecting care recipients’ comfort and understanding. Language barriers restricted access to organizational resources and increased caregiver workload.

Work Processes

Uneven Distribution of Labor

Despite cultural ideals emphasizing family solidarity, caregiving labor was unevenly distributed. Responsibility typically fell to a single caregiver—most often a daughter or wife—while other family members contributed minimally or only in supervisory roles. One caregiver stated, “I don't have a life for myself…I have to carry everything…it's tiring...Emotionally. It’s a job” (P13). Another described quitting her job to care for her father as the only daughter (P07).

Some caregivers described siblings living nearby who rarely participated, while others provided oversight rather than hands-on care: “…my brother’s [house is] just a minute away…sometimes months pass [before] he… visits Mom. I said… “I can’t believe you being a minute away. You don’t come see Mom, but you come and yell at me’” (P07); “The other daughter...she would just come in check on her, you know, if she needs anything, call me, whatever” (P03). Gendered expectations normalized this concentration of labor, positioning women as the default caregivers whose work was expected rather than negotiated.

Work Outcomes

Worker Burnout and Health Consequences

The interaction of worker characteristics, demanding tasks, organizational barriers, environmental constraints, and labor concentration produced predictable outcomes of burnout and health decline. Caregivers described exhaustion across physical and emotional domains: “It drains you” (P05), and “it’s tiring, frustrating, depressing” (P06).

Several caregivers reported secondary health consequences attributed to caregiving stress, including chronic illness, hospitalization, and hair loss, especially as care intensity increased with care recipient co-morbidities and dementia progression: “When I started taking care of my dad, I was in good health. But then I started getting sick... the doctor said that it was because of all the stress that I was going through with dad.” (P07). Caregiving also disrupted anticipated retirement and life trajectories, effectively becoming an unplanned second career: “We didn't retire to have a good life and go on vacations…we retired and ended up having to take care of a parent” (P05). Despite these burdens, caregivers remained committed to ensuring quality of life for their loved ones (P09).

The interaction of these work system components—worker characteristics limiting help-seeking, demanding physical and emotional labor, underutilized organizational supports, environmental barriers, and concentration of work on one person—produced predictable outcomes: worker burnout and health deterioration. Our work systems analysis reveals these outcomes as emergent properties of system interactions rather than as isolated effects of individual factors.

Discussion

This study reframes Mexican American dementia caregiving as labor embedded within a sociotechnical work system. Applying the Systems Engineering Initiative for Patient Safety (SEIPS) 3.0 framework reveals how cultural values, stigma, organizational barriers, and environmental constraints interact to shape caregiver burden. Rather than operating as discrete predictors, these factors converge to impose caregiving labor on individual family members—most often daughters or wives—while intensifying physical and emotional demands and limiting access to support. Burnout and health decline emerge not as isolated outcomes but as predictable consequences of sustained high-demand work performed within constrained systems (Mage et al., 2024; Mehdipanah et al., 2022, 2025).

The Value of a Work Systems Lens

Applying work systems theory to dementia caregiving extends stress-process models (Pearlin et al., 1990) by foregrounding emotional labor involved in managing delusions, absorbing accusations and regulating one’s own affect, and cognitive load, as cumulative work demands rather than discrete stressors, thereby explaining how burden accrues even when individual task appear manageable. Prior studies document caregiving tasks and stressors (Apesoa-Varano et al., 2012; Cortes et al., 2024; Ruiz & Talamantes, 2020), but framing these activities as work demands emphasizes how they accumulate over time and interact with limited organizational support. Emotional labor—such as managing delusions, preventing agitation, absorbing accusations, and maintaining emotional stability—adds substantially to workload yet remains largely invisible and unsupported. A SEIPS 3.0 work systems lens reattributes caregiver exhaustion from individual coping deficits emphasized in resilience-focused interventions to system-level constraints including inadequate task redistribution, inadequate organizational supports, and culturally reinforced non-delegation norms, redirecting intervention targets from individual behavior change to system redesign.

This perspective also helps reconcile mixed findings regarding familismo. While familismo has been associated with sustained caregiving commitment and delayed institutionalization (Mausbach et al., 2004), it has also been linked to increased burden and depressive symptoms under constrained conditions (Falzarano et al., 2022; Mendez-Luck et al., 2020). Our findings suggest that familismo is neither uniformly protective nor inherently harmful; its effects depend on how cultural commitment interacts with stigma, resource availability, and labor distribution within the caregiving system.

Reframing Familiar Factors as Interacting Work System Elements

Familismo, stigma, self-reliance, and language barriers are well documented in Latino dementia caregiving research (Dickson et al., 2017; Gelman, 2014; Martinez & Acosta Gonzalez, 2022; Ovalle-Eliseo et al., 2025). This study extends discrete-factor models of Latino caregiving by demonstrating that familismo, stigma, self-reliance and language barriers operate as a reinforcing feedback system: cultural norms frame care as non-delegable, stigma prevents disclosure that might redistribute labor, and language barriers block access to formal supports that could interrupt this cycle, focusing burden on primary caregivers even when extended family is nominally available.

This work systems framing challenges deficit-based service utilization models (e.g. Andersen’s Behavioral Model (Andersen et al., 2013) applications that emphasize predisposing cultural factors) by demonstrating that Mexican American caregivers activity seek services but encounter structural barriers such as financial eligibility thresholds, bureaucratic complexity, and linguistic discordance, that system-level analysis reveals as the primary utilization constraints. Locating this gap in work system characteristics rather than in cultural preference or lack of awareness challenges explanations that attribute low utilization primarily to familismo (Min & Barrio, 2009). Instead, these findings support calls for structural and policy reforms that address economic constraints and improve system access (Antequera et al., 2024; Nadash, 2024).

Situating our findings within the broader landscape of ethnic caregiving disparities further underscores the importance of a work systems perspective. While all ethnic groups experience caregiving burden, Hispanic/Latino caregivers face distinct challenges compared to non-Hispanic White, African American, and Asian American caregivers. Hispanic caregivers provide more hours of care per week, are more likely to live with the care recipient, and report higher levels of physical strain than non-Hispanic White caregivers (Alzheimer’s Association, 2025; Sehar et al., 2023). Although African American caregivers also report high caregiving intensity and similar structural barriers including financial constraints, Hispanic caregivers face the compounding effect of language barriers that restrict access to services and health information in ways not typically experienced by English-speaking minority groups (Brownell et al., 2024; Garcia et al., 2024). Furthermore, while cultural values emphasizing family obligation exist across ethnic groups—such as filial piety among Asian American populations—the interaction of familismo with stigma surrounding mental illness, language discordance, and immigration-related barriers creates a configuration of work system constraints that is specific to Hispanic/Latino communities (Culberson et al., 2023; Rawat et al., 2024). Compared to non-Hispanic White caregivers, who are more likely to use formal services including adult day care, respite services, and professional home care, Mexican American caregivers in our study reported active service-seeking that was constrained by structural barriers rather than cultural aversion—a distinction with important implications for how interventions are designed and targeted.

Care Intensity, Dyadic, and Intergenerational Considerations

Care intensity increased as dementia progressed and comorbidities accumulated, consistent with prior evidence linking caregiving demands to adverse physical and mental health outcomes (Vasquez et al., 2025). While familismo may buffer distress in some contexts (Mehdipanah et al., 2025), our findings suggest this buffering is often insufficient when families absorb the full weight of care without adequate organizational support. Healthcare systems and policymakers should prioritize caregiver support interventions including respite access, care coordination and emotional labor recognition, because caregiver burnout degrades care quality through reduced patience, diminished attentiveness to behavioral symptoms, and relationship breakdowns that destabilize the care dyad and accelerate institutionalization.

Dyadic and intergenerational dynamics further shape caregiving systems. Caregiving relationships often involve spouses or adult children whose identities and life trajectories become intertwined with care responsibilities. Generation X caregivers, in particular, may experience heightened strain as members of the “sandwich generation,” balancing employment, caregiving for aging parents, and responsibilities to children (Ang, 2024; Chassin et al., 2010; Lei et al., 2022; Li, 2024; Miyawaki et al., 2021; Owsiany et al., 2023; Spillman & Pezzin, 2000; Tyagi et al., 2023; Vasquez et al., 2025). Although male caregiving is increasing in younger cohorts, women continue to provide the majority of family-based dementia care. Gendered expectations, often framed through marianismo, position daughters and wives as “natural” caregivers, normalizing labor concentration and limiting negotiation of shared responsibility (Jaldin et al., 2023; Mendez-Luck & Anthony, 2016). Intervention designers should assess gendered labor expectations (e.g., marianismo norms positioning daughters/wives as default caregivers) and generational constraints (e.g., sandwich generation competing demands) during needs assessment, and should include explicit care redistribution components such as facilitated family meetings or male caregiver engagement strategies to avoid focusing care labor on women.

Implications for Intervention Design and Policy

Because caregiver burden emerges from interacting system elements such as cultural non-delegation norms, stigma-driven isolation and structural access barriers, interventions targeting only one factor (e.g., education without addressing stigma, or respite without addressing eligibility barriers) will produce limited effects; effective interventions must bundle stigma reduction, linguistically concordant service delivery, and financial access expansion. The interdependence of system barriers helps explain the limited efficacy evidence for culturally adapted Latino caregiver interventions, as interventions addressing single factors (e.g., cultural adaptation of educational content) cannot overcome concurrent barriers (Neidre et al., 2025).

A SEIPS 3.0 work systems perspective indicates that interventions should target high-leverage system nodes—stigma reduction, language-concordant access points, and financial barrier removal—where change propagates: reducing stigma enables disclosure which activates family redistribution of care labor and formal service engagement, creating cascading burden reduction across the work system (Assfaw et al., 2025; James et al., 2021; Parker et al., 2025). Language-concordant services—including Spanish-speaking providers, Spanish-language materials, and culturally appropriate programming—should be understood not as accommodations for individual preference but as structural requirements for equitable access (Massett et al., 2021; Ovalle-Eliseo et al., 2025) to mediate the additional labor imposed by language discordance and lack of organizational support for improved caregiver well-being (Angel et al., 2022; Rote et al., 2019).

Interventions should leverage familismo by framing formal services as tools that enable sustained family-based care (e.g., “respite helps you care longer”) rather than as replacements for family responsibility, and should incorporate family-inclusive programming that positions the caregiver as care coordinator rather than delegator, aligning with cultural expectations while reducing individual burden (Arteaga et al., 2025; Min & Barrio, 2009). Recent culturally adapted interventions—such as STAR-VTF Mariscal et al. (2025), the CONFIDENCE program (Mage et al., 2025; Meyer et al., 2025), and Brain CareNotes (Rodriguez et al., 2023)—align with this approach. Our findings further suggest that person-level orientations toward self-reliance are modifiable; caregivers described learning to accept help through crisis, peer modeling, or trusted intermediaries. Interventions can accelerate caregiver acceptance of external help by explicitly incorporating familism constructs—for example, framing respite use as protecting one’s capacity to fulfill family duty, using peer modeling from other caregivers who accepted help, and engaging trusted intermediaries (e.g., promotoras, clergy) to legitimize service use within cultural frameworks.

At the policy level, frameworks must recognize the economic and health impacts of informal dementia caregiving. Prior analyses document substantial financial burden among Latino caregivers (Antequera et al., 2024; Mage et al., 2024). Policy recommendations include expanding paid family leave programs, formally integrating caregivers into care planning and medical records, training community health workers to support dementia screening and referrals (Lee et al., 2025), and ensuring caregiver training programs are linguistically and culturally competent.

Extending SEIPS to Informal Care Work

This study advances the informal caregiving-as-work paradigm (Reinhard et al., 2023) by demonstrating how SEIPS 3.0, a framework developed for formal healthcare work, can be applied to informal dementia caregiving, specifically by mapping how cultural norms, organizational barriers, and environmental constraints function as work system elements that shape caregiver workload, burnout and health outcomes. This contribution complements growing scholarship on Hispanic caregiver burden, including comprehensive reviews documenting the epidemiological, biological, and psychosocial dimensions of AD/ADRD among Hispanics (Culberson et al., 2023; Rawat et al., 2024; Sehar et al., 2023) and studies examining innovative methods for supporting Hispanic family caregivers in underserved regions (Brownell et al., 2024; Garcia et al., 2024). Many caregivers simultaneously hold paid jobs, creating “double jeopardy” that forces reduced work hours, stalled advancement, or workforce exit (American Association of Retired Persons & National Alliance for Caregiving, 2020). Applying SEIPS to informal caregiving highlights opportunities to further adapt the framework to family-based care systems, including blurred worker–recipient roles and the absence of formal organizational structures that regulate work conditions.

By making informal caregiving labor visible as multidimensional work encompassing physical tasks, emotional regulation, cognitive monitoring, and care coordination, a SEIPS 3.0 provides intervention designers and policymakers with specific targets for system redesign: task redistribution mechanisms, emotional labor supports and organizational structures that reduce individual burden while maintaining care continuity. Human factors engineering methods, including task analysis to quantify care demands, workload assessment instruments adapted for informal care contexts, and system redesign principles that distribute demands across workers and organizational supports, can be transferred from formal healthcare settings to informal dementia caregiving, with adaptations for blurred worker-recipient boundaries and the absence of regulatory structures that govern formal work.

Limitations

This study has limitations, several of which reflect methodological challenges common to Latino dementia caregiving research (Garcia et al., 2024; Mendez-Luck & Anthony, 2016). Our sample (14 of 15 female) reflects the gendered distribution of dementia caregiving but limits transferability to male caregivers, an increasingly relevant population as caregiving rises in younger cohorts (Vasquez et al., 2025). Participants were from one border community; caregiving experiences in non-border regions, areas with greater specialty care access, or communities with different acculturation patters may differ, limiting generalizability beyond similar border contexts (Garcia et al., 2024; Rojas-Álvarez & Bokun, 2025). The sample was small, yet consistent with qualitative methods sufficient for thematic saturation. Care recipients were not interviewed, precluding analysis of how persons with dementia perceive care quality, experience caregiver stress, or would characterize their own needs within the work system. The cross-sectional design captures caregiving at single points ranging from 6 months to 25 years post-onset but cannot reveal how work system configurations shift as dementia progresses or how caregivers adapt strategies over time; longitudinal research is needed to examine work system evolution; daily diary methods could capture the granular fluctuation in task demands and emotional labor that retrospective interviews may smooth over (Bolger et al., 2003; Evans & Coon, 2016; Potts et al., 2020; Rote et al., 2015).

Conclusions

This study demonstrates that viewing dementia caregiving as work within a sociotechnical system clarifies how cultural beliefs, stigma, and language and financial barriers interact to produce caregiver burden among Mexican American families. Care is framed as a non-delegable responsibility, stigma prevents disclosure that would enable help, organizational supports remain difficult to access because of language and financial barriers, and family members carry caregiving until burnout occurs. Caregiver burden and burnout emerge from system interactions rather than isolated factors. This work systems view identifies stigma reduction and language-concordant services as points where interventions could interrupt the work system dynamics that transform cultural commitment into unsustainable burden. Recognizing caregiving as work does not diminish, its relational meaning—the emotional, moral, and familial significance of providing care for a loved one. Instead, it explains why families committed to care need systems that provide linguistic access, reduce stigma, and distribute care labor rather than relying on individual endurance. As Latino dementia prevalence rises, addressing caregiver burden requires policy and intervention approaches that treat caregiving as culturally embedded, economically consequential labor, and that design systems treating family caregivers as workers deserving support, not simply resources to be depleted.

Supplemental Material

Supplemental Material - Caregiving as Work: A Qualitative Study of Dementia Caregiving Among Mexican American Families Using SEIPS 3.0

Supplemental Material for Caregiving as Work: A Qualitative Study of Dementia Caregiving Among Mexican American Families Using SEIPS 3.0 by Laura Tovar, Juliana Guevara Mendoza, Aditi Kaushal, Maria Llamas, Priyadarshini Pennathur, Arunkumar Pennathur in Dementia.

Footnotes

Acknowledgements

The authors thank the organizations and individuals who enabled this research and participated in the study sharing their experiences and views.

ORCID iD

Arunkumar Pennathur

Ethical Considerations

Ethical approval for this study was obtained from the University of Texas at El Paso Institutional Review Board Approval Number 2292685-3.

Consent to Participate

Written informed consent was obtained from all participants.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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 data that support the findings of this study are not publicly available due to their containing information that could compromise the privacy of research participants. The data were collected under human subjects research protocols approved by the University of Texas at El Paso Institutional Review Board. *

Supplemental Material

Supplemental material for this article is available online.

Author Biographies

Laura Tovar completed her Bachelors and Masters degrees in industrial engineering from the University of Texas at El Paso. Her research interests are in dementia caregiving.

Juliana Guevara Mendoza is an Honors Scholar in Nursing and is training to be a Geriatric Acute Care Nurse.

Aditi Kaushal is a Research Scholar and a Senior at Neuqua Valley High School in Illinois with interests in bridging medicine and anthropology and collaborates with the PIC-HFE Research Laboratory at the University of Texas at El Paso.

Maria G. Llamas is affiliated with the Geriatric Workforce Enhancement Program in the Borderland at the University of Texas at El Paso College of Nursing and works in community-based dementia education and caregiver support.

Priyadarshini Pennathur is an Associate Professor of Industrial, Manufacturing and Systems Engineering at the University of Texas at El Paso whose research focuses on human factors engineering, healthcare systems, and patient and caregiver safety.

Arunkumar Pennathur is an Associate Professor of Industrial, Manufacturing and Systems Engineering at the University of Texas at El Paso whose research focuses on human factors engineering, dementia caregiving, and the design of sociotechnical healthcare and caregiving systems.

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