Abstract
Introduction
Alzheimer's disease and related dementias affect Latino older adults who are living longer with dementia. Puerto Ricans are the second-largest Hispanic group in the United States, and they differ in language, norms, and values from other cultures. As the number of dementia cases increases, the demand for caregivers will rise.
Method
The integrative review was guided by Whittemore and Knafl's framework and aimed to evaluate and synthesize the existing literature regarding the experience, beliefs, and values of Puerto Rican dementia family caregivers. A comprehensive search of PubMed, CINAHL, Embase, PsycInfo, and LILACS databases was performed to examine the literature from 2013 to 2025.
Results
Four key themes emerged: (1) spirituality is essential for caregiving, (2) home is a better place to be, (3) toll of caregiving, and (4) long-established gender roles.
Conclusion
The findings demonstrate the scarcity of Puerto Rican caregiver representation in the literature. Further research is needed to determine Puerto Rican values and beliefs regarding caregiving.
Alzheimer's Disease and related dementias (ADRD) in the Latino community have become a crisis in the United States (Alzheimer's Association, 2025). ADRD prevalence is notably higher in the Latino population compared to other groups in the US (Mehta & Yeo, 2017; Rajan et al., 2021). Among the different Latino subgroups, Caribbean Hispanics exhibit the highest rates of dementia (Acosta et al., 2021). The number of Latinos living with ADRD in the United States is projected to rise, largely attributed to longer life expectancy (Matthews et al., 2019). This growth will not only impose an economic burden on Latinos (Mudrazija et al., 2025) but also contribute to an increase in healthcare costs (Olchanski et al., 2024).
The projected surge in dementia diagnoses among the Latino population will inevitably result in a greater demand for caregivers. Latinos are also more likely to rely on informal caregivers, particularly family members, than other groups. This reliance can contribute to a higher prevalence of mental health concerns among caregivers (Muñoz-Alicea & Suarez-Gomez, 2025). The daily stressors experienced by caregivers as the disease progresses intensify and considerably impact their overall well-being (Duplantier & Williamson, 2023; Spigelmyer et al., 2018) and continue to be a source of caregiver burden (Mage et al., 2024). The emotional and financial demands associated with caring for family members with dementia usually fall on the family, frequently leading to increased psychological distress. Furthermore, barriers and limited access to resources for family members further exacerbate this burden (Gupta, 2021; Perales-Puchalt et al., 2025; Rabarison et al., 2018).
Latinos comprise various cultures from South and Central America and the Caribbean, each with its distinctive cultural uniqueness (Quiroz et al., 2022). According to estimates, forty percent of Latinos aged 85 years and older have ADRD (Matthews et al., 2019). However, despite Puerto Ricans being the second largest Hispanic subgroup in the U.S., most of the literature on Latino dementia family caregiver research focuses on the Mexican American population (Mehta & Yeo, 2017).
Puerto Ricans’ negative experiences are rooted in their colonial history (Marazzi & Vollhardt, 2025) and the existing sociopolitical climate (García-López & McCormick-Rivera, 2024). Underfunded preventative care, privatization of primary care, and limited political power have systematically weakened the island's public health system and contributed to the health disparities experienced by the people on the island (Pérez Ramos et al., 2022). Health disparities were further exacerbated by the natural disasters of Hurricane Maria and Hurricane Irma (Benach et al., 2019), and earthquakes (Peña-Vargas et al., 2022), which devastated the island. Overall, Puerto Ricans’ quality of life remains unchanged as a result of persistent social determinants faced by the people (Frontera-Escudero et al., 2023).
To better understand what is known and unknown, an integrative review of the literature focused on the question: What are the values, beliefs, and perceptions of Puerto Rican dementia family caregivers living in the United States?
Method
The integrative review was conducted using Whittemore and Knafl's five-stage framework: (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis, and (5) presentation (Whittemore & Knafl, 2005). Integrative reviews using the Whittemore and Knafl method allow researchers to combine diverse methodologies to better understand a topic of concern (Hopia et al., 2016; Whittemore & Knafl, 2005).
A comprehensive search was conducted using the databases: PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL), PsycInfo, Embase, and Lilac to identify articles that addressed Puerto Rican dementia family caregiving. The search strategy focused on broad terms including Puerto Rican(s), Latino, Hispanic, or Caribbean Hispanic, dementia or Alzheimer's Disease, caregivers, or family members. The search included keywords, database-specific controlled vocabulary terms including MESH, Boolean operators, and term truncation to maximize the search results. The searches were finalized in April 2025. Articles were reviewed for inclusion based on the following criteria: (1) peer-reviewed articles published in English between 2013 and 2025; (2) study sample included Puerto Rican caregivers; (3) discussed caregivers’ values, beliefs, or perceptions. Studies were excluded if they were not peer-reviewed, were published earlier than 2013, the article was not published in English, did not include Puerto Rican caregivers, or did not discuss caregivers’ values, beliefs, or perceptions of caring for someone with a diagnosis of dementia. To ensure the search strategy employed was appropriate a research librarian conducted a peer review of the approach.
Given the scarcity of studies, articles were reviewed and incorporated if Puerto Ricans were included in the sample. Figure 1 illustrates the steps of the study selection process according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (Page et al., 2021). Covidence (2025) was used to screen for titles and abstracts for inclusion of articles. References were imported into Covidence software using the above identified search strategy, and duplicate references were deleted. The remaining references were screened by the first author using the titles and abstracts of the referenced articles. Next, full-text articles were retrieved and screened by the first author for use by reviewing relevancy to the research question and to confirm eligibility. A total of 460 articles were identified; after duplicates were removed, 275 abstracts were screened, and 248 were excluded based on the eligibility criteria, leaving 27 articles for full-text review. Eleven articles were included in the review.
PRISMA diagram.
The final articles included in the review were evaluated with the Joanna Briggs Institute (JBI) Critical Appraisal Tool for cross-sectional studies and qualitative research (Lockwood et al., 2015). The JBI appraisal tool evaluates the methodological quality of research articles based on the presence or absence of the eight and ten criteria for cross-sectional and qualitative studies, respectively. The articles were assessed for methodological quality and bias in the study design. The items were scored as yes, no, unclear, or not applicable, with a potential total score of 8 or 10. The studies in this review were ranked as high (Table 1).
Summary of Included Studies.
According to the purpose of the review, a data matrix was created for each included study. Data were extracted based on the research question. Primary sources were divided into subgroups to aid data analysis (Whittemore & Knafl, 2005). Categories were extracted based on the aspects and characteristics of caregiving. Each category was then searched for similarities and differences. The data were compiled and compared to determine patterns and themes.
Results
Eleven articles were identified that satisfied the search criteria for a comprehensive analysis. Publications ranged from 2013 to 2025. The studies evaluated focused on Hispanic caregivers’ values, beliefs, and perceptions. Seven of the studies utilized a qualitative approach to explore caregivers’ experiences (Balbim et al., 2019; Balbim et al., 2020; Cabrera et al., 2021; Gelman, 2014; Jaldin et al., 2023; Martinez & Acosta Gonzalez, 2022; Rote et al., 2019). Four studies were quantitative research papers consisting of cross-sectional, correlational, and cohort study designs (Gonyea & O'Donnell, 2021; Luchsinger et al., 2015; Phetsitong et al., 2022; Sun & Hodge, 2014). The populations in the identified studies included diverse Latino populations. Mexican Americans, Colombians, Venezuelans, Dominicans, Cubans, and Puerto Ricans were represented in the studies selected.
Four main themes emerged from the data analysis of the articles: (1) spirituality is essential for caregiving, (2) home is a better place to be, (3) the toll of caregiving, and (4) long-established gender roles.
Spirituality is Essential for Caregiving
A common theme identified across multiple studies was that spirituality is essential as a coping strategy for individuals caring for loved ones with dementia (Balbim et al., 2019; Gonyea & O'Donnell, 2021; Jaldin et al., 2023; Sun & Hodge, 2014). Many caregivers rely on their faith in a higher power and personal spiritual beliefs as a key factor that provides a mechanism to navigate the daily stressors of rendering care to a family member with dementia. This spiritual foundation provides strength to manage the ongoing stressors faced by caregivers.
The cultural value of fatalism, the belief that it is in God's hands and God will provide, is a common belief among Latinos (Balbim et al., 2019). Faith in a higher power provides the caregiver comfort and reassurance that God will guide and deliver. Caregivers engaged in religious activities, attended church services, meditation, or prayer, have better coping strategies than those caregivers who did not have a belief system (Balbim et al., 2019; Sun & Hodge, 2014). Contrary, caregivers not involved in worship were more depressed and anxious (Gonyea & O'Donnell, 2021; Sun & Hodge, 2014). Specific religious affiliations were identified in 2 of the 11 studies as Christian faith, Roman Catholic, or Evangelical (Gonyea & O'Donnell, 2021; Sun & Hodge, 2014).
Home is a Better Place to Be
In the Latino culture, caregiving is perceived as a sense of obligation to care for a loved family member, generally referred to as the cultural value of familismo (Balbim et al., 2019; Rote et al., 2019) The caregiver's acknowledgement and commitment to providing care in the home is better since they are attentive to the family members’ needs, such as preparing meals and providing companionship. Four of the eleven studies reiterated that placing family members in nursing homes would not provide the same level of care as provided by family members at home (Balbim et al., 2019; Balbim et al., 2020; Cabrera et al., 2021; Gelman, 2014; Gonyea & O'Donnell, 2021; Martinez & Acosta Gonzalez, 2022). Nursing homes are often considered unacceptable and are believed not to offer the same quality of care as that provided in the home.
Assisting family members with activities of daily living provides a sense of fulfillment for the caregivers, reinforcing the decision to keep family members at home (Cabrera et al., 2021; Martinez & Acosta Gonzalez, 2022). Martinez et al. (2022) highlights the differences between providing care by a healthcare professional and caring by loved family members. The care provided by the family member is perceived as deeply gratifying and affectionate by the caregiver. Assistance is more than a physical action or a financial burden; it provides for the emotional needs of the family members with dementia. Caregivers experience a myriad of feelings associated with supporting their loved ones, including pride and gratitude for the care delivered (Cabrera et al., 2021; Martinez & Acosta Gonzalez, 2022). However, the most prominently reported feeling was a sense of fulfillment in caring for a family member (Cabrera et al., 2021; Martinez & Acosta Gonzalez, 2022).
Toll of Caregiving
Caregiver burden was considerably meaningful among caregivers providing the care at home, especially if they were ill and younger (Balbim et al., 2020; Luchsinger et al., 2015; Phetsitong et al., 2022; Sun & Hodge, 2014). The caregiver burden was primarily described in relation to activities of daily living, such as preparing meals, toileting, administering medications, and making appointments, in addition to the financial responsibilities of the caregivers. Caregiver burden was also associated with the dementia severity of the family members and caregiver comorbidities (Luchsinger et al., 2015). A higher level of family support for caregivers is essential to reduce the stress experienced by caregivers. Increased networks of family and friends aided in reducing caregiver burden (Luchsinger et al., 2015).
Caregivers with limited or a lack of family support experienced greater mental health distress, such as anxiety and depression (Balbim et al., 2020; Rote et al., 2019). Social support was observed to be a protective factor for the caregivers (Luchsinger et al., 2015; Rote et al., 2019). Participants in the studies expressed that reduced support systems increased anxiety and depression and negatively affected caregiver health. Strategies employed by caregivers involved increasing social interactions and keeping busy, and avoidance to mitigate stressors (Balbim et al., 2019).
Long-Established Gender Roles
In the Hispanic culture, caregiving is perceived as a responsibility that falls on the daughter or female, marianismo, signifying devotion to the family (Balbim et al., 2020; Gonyea & O'Donnell, 2021; Jaldin et al., 2023; Martinez & Acosta Gonzalez, 2022; Phetsitong et al., 2022). Women, characterized as caring and affectionate, held the caregiving role for family members. Women are primarily tasked with delivering care to their mothers, as men express discomfort providing care for their mothers. As a result, men are not typically thought of as caregivers in the Hispanic culture or machismo, as caregiving is not considered a male role (Jaldin et al., 2023).
Although males are not routinely perceived in the caregiving role, two studies explored the male perspective as the primary caregiver for family members (Jaldin et al., 2023; Martinez & Acosta Gonzalez, 2022). The studies reported that men experienced pride in the ability to provide care for their family members (Martinez & Acosta Gonzalez, 2022). This pride stems from the fulfillment and gratification derived from supporting loved ones. Although able to provide care for family members, males were most concerned about the appearance of weakness to others and failing as a caregiver. These conflicting emotions highlight the challenges faced by men as they balance their sense of pride with societal expectations.
Discussion
The purpose of this review was to examine the existing literature to comprehend specifically Puerto Ricans’ values, beliefs, and perceptions of caregiving for family members with dementia. However, this review encountered limited samples with Puerto Ricans in the studies, highlighting the dearth of research focused specifically on Puerto Ricans in the research literature and emphasizing the need for research in this subgroup of Latinos.
The studies underscored that Hispanics turn to religion and family for support to cope and provide solace for the experiences that they are undergoing as they see their loved ones’ health deteriorate. (Gonyea & O'Donnell, 2021). It remains unclear if Puerto Ricans have the same beliefs and values. The belief in a higher power and trust that God will provide comfort to caregivers, compared to those who do not embrace religious activities (Gonyea & O'Donnell, 2021). Studies have found that religious activities, such as prayer and meditation, or spirituality, improve caregivers’ quality of life as a coping mechanism (King et al., 2023; Zheng et al., 2021). Research on culturally appropriate interventions for reducing the caregiver burden of Hispanics is limited to reducing stressors. Similarly, a study of rural family caregivers found that they draw on faith to cope with decision-making and provide support for their family members (Gazaway et al., 2024). Religious coping strategies have been found to positively influence social support and caregiving practices (Heo, 2014). This connection between faith, coping mechanisms, and social support underscores the importance of spirituality for caregivers.
Hispanics also demonstrate a strong commitment and duty to providing care for family members with dementia, longing for better outcomes. Studies lacked adequate representation of Puerto Rican participants. Three studies addressed how caregivers experience a sense of satisfaction in providing good care to loved ones (Balbim et al., 2019; Balbim et al., 2020; Martinez & Acosta Gonzalez, 2022). However, according to Gelman (2014), this sense of familismo, rooted in cultural values, may pose a challenge for caregivers unprepared for the ramifications of the disease progression. Similarly, it is the value of familismo that deepens the toll of caregiving for Hispanic caregivers, heightening caregiver burden. Understanding the subtleties among Hispanic subgroups is necessary to appreciate cultural differences.
Hispanics have reported high levels of difficulty either coordinating care or activities of daily living for family members (Bell et al., 2021). Rendering care by one person is physically and mentally challenging. Four studies highlighted the challenges and burdens experienced by caregivers. The multi-country study by Phetsitong et al. (2022) demonstrates that Puerto Ricans had the highest level of households with older and single caregivers compared with caregivers from other countries, especially when most caregivers are women (Balbim et al., 2020; Gonyea & O'Donnell, 2021; Jaldin et al., 2023, 2023; Martinez & Acosta Gonzalez, 2022; Phetsitong et al., 2022).
In Latino culture, women, especially daughters, are expected to provide the care required for ill family members compared to men. Caregiving is not usually considered masculine or a responsibility of the sons in the family (Jaldin et al., 2023; Martinez & Acosta Gonzalez, 2022). In this review, more women caregivers than men provided most of the care, similar to African Americans and Whites (Liu et al., 2022). However, the studies that included men in the sample found that male caregivers took pride in rendering care for their parents. Men are becoming more involved in caregiving as gender stereotypes shift (Lopez–Anuarbe & Kohli). Lopez–Anuarbe and Kohli (2019) found that male caregivers experienced significant emotional, financial, and particularly physical burdens when providing personal care activities to family members. An opposite level of burden was found with Chinese immigrant caregivers, with higher familial obligations experiencing a lower caregiver burden (Guo et al., 2019).
Implications for Research
The most significant finding of this integrative review is the paucity of dementia family caregiving research relating exclusively to the subculture of Puerto Rico. As a result, the studies used in this literature review included multiethnic samples of Hispanic participants from the US, Central and South America, and the Caribbean, and generally discuss Hispanic or Latino culture but do not specifically address the beliefs of Puerto Rican caregivers, who may hold values and views distinct from those of generalized Hispanic cultures. In fact, of the eleven studies included in this review, one study had a participant of Puerto Rican descent in their total sample (Rote et al., 2019). This gap in the literature has the potential to affect the allocation of resources and potentially delay culturally appropriate interventions specifically designed to support Puerto Rican caregivers who help people diagnosed with dementia. Considering that two-thirds of Puerto Rican caregivers assist family members, support for these caregivers is imperative to help them sustain their caregiving role (Skufca, 2021). Understanding the social determinants faced by Puerto Ricans is vital to identifying Puerto Ricans’ cultural attitudes towards their lack of participation in research (De Ver Dye et al., 2024).
Alzheimer's disease has been identified as a growing health concern in Puerto Rico, relating to increasing health demand for dementia related services, for both the person with dementia and their family caregiver, which exceeds the existing infrastructure (Alzheimer's Association, 2025). The systemic disparities in healthcare funding, limited Medicare and Medicaid, and inadequate access to diagnostic services, specialty care, and long-term services affect Puerto Ricans (Rivera-Gonzalez et al., 2022). As a result, the bulk of financial and supportive care rests on family caregivers who will deal with increasing demands as they provide care for their loved ones with dementia (Quiñones-Cordero et al., 2025). The inevitable dependence on family caregivers as dementia progresses places a considerable burden on family caregivers, amplifying their stress and taxing those who lack support systems.
Collectively, the above-named factors intensify caregiver burden and worsen health inequities related to dementia care. Consequently, families are increasingly relied upon to provide care for their loved ones with dementia without their own support to continue long-term in their caregiving role. This lack of formal caregiving support for families places a considerable burden on family caregivers, heightening both their responsibilities and burden. Ongoing research is needed further investigating the disparities Puerto Rican family caregivers face while providing care for someone with dementia. Additionally, more research is needed to help inform public policy and ensure access to culturally competent care for Puerto Rican family caregivers.
Lastly, more studies investigating Hispanic subgroups are critical to ensure healthcare providers understand cultural differences and present culturally competent support for their Hispanic clients. Current research indicates that healthcare providers do not entirely fulfill the needs of Latino family caregivers (Martinez et al., 2024). Therefore, increasing the body of research focused on the Hispanic subgroup of Puerto Rican dementia family caregivers is vital to fully understanding the needs of this population, especially when the number of Hispanics with dementia is projected to increase in the near future (Alzheime'’s Association, 2025).
Conclusion
The results of this integrative review emphasize Hispanics’ strong commitment to family and caregiving, which would otherwise be suboptimal if provided in a nursing home. Providing care for family members with dementia is considered a duty that, in turn, amplifies the caregiver's burden. It is this obligation to family that also heightens the stressors, depression, and anxiety of the primary caregiver. Caregivers rely on their religious beliefs and social networks to cope with the burden experienced from rendering daily care. While the above realities of providing care for someone with dementia focus on the Hispanic cultural perspective, this integrative review highlights the scarcity of research into the Hispanic subculture of Puerto Rican dementia caregivers. Not all Hispanic subcultures are the same. Further research studies evaluating the Puerto Rican caregiver experience, cultural values, and beliefs are imperative to understanding their influence on caregiving and family members. Increasing knowledge and recognizing the unique cultural differences of the Puerto Rican caregivers is vital to promoting culturally congruent, competent, and equitable dementia care.
Footnotes
Author's Note
Elsie A. Rivera 
, Duquesne University, 600 Forbes Ave, Pittsburgh, PA, 15282. Assistant Professor at Kean University, Union, NJ 07083,
Pamela C. Spigelmyer , Duquesne University, 600 Forbes Ave, Fisher Hall 512, Pittsburgh, PA, 15282,
Acknowledgments
David Nolfi, Duquesne University, Gumberg Library
Ethical Considerations
There are no human participants in this article, and informed consent is not required.
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.