In the ethnogerontological literature, familism plays a central role in the academic discourse on the Latino experience of (dementia) caregiving and the propensity of Latinos to underutilize formal services. Yet there is a dearth of ethnographic or qualitative data on Latina/o caregivers examining how historical, structural, and cultural factors may influence caregiver experience and practices. Furthermore, much of the caregiving literature tacitly assumes a somewhat homogenized view of the Latina caregiver, with little attention to how caregiving expectations, experiences, or practices may vary by social characteristics such as gender, generation, or acculturation. The goal of our article is to addresses some of these gaps in the literature through the presentation and analysis of a case study of a U.S.-born Latina caring for her immigrant mother who suffers from dementia. Our analysis moves beyond notions of familism and the nuances of an ethics of care that constitute caregiving by Latina daughters. Our discussion of Latina ethics of care, the values and practices of caring for others, is framed by the distinction between familism as “ideology” and “practice” that was highlighted by Wallace and Facio (1987)
. More specifically, we use the concept of “an ethics of care” drawn from feminist and Chicana literature on the gendered nature of caregiving (Ibarra; Tronto) to move beyond familism as a general ideology to a more “experience-near” account of dementia-caregiving experiences and practices within Latino families.
Familism refers to the value of the family as an institution, the ideal of interdependence in family relationships, and the priority placed on reliance on family members rather than on more impersonal institutions for instrumental, emotional, and material support (Marin & Van Oss Marin, 1991
). Familism as ideology refers to cultural values that guide family relationships (Sabogal, Otero Sabogal, & Marin, 1989
). While familism is possibly a universal value and not unique to Latinos, the high priority accorded to family often regarded as the most significant common cultural denominator among Latinos of various national origins and the value most likely to remain unchanged despite migration and increased acculturation (Hurtado, 1995
; Marin & Van Oss Marin; Velasquez, Arellano, & McNeil, 2004
). The influence of familism on caregiving behaviors among Latinos has been studied only recently. With the exception of Ibarra (2003)
and Henderson (1996
), few researchers have examined how familism as a cultural value or ideology may influence the performance of the ethics of care for Latina caregivers. Moreover, no studies to date have examined how cultural values are translated into caregiving behaviors among Latina daughters. Likewise, the extant literature does not articulate how Latina caregivers negotiate their performance of the caregiving role when dementia in their parents challenges their enactment of and respect for traditional cultural scripts (Henderson, 1996
In general the literature on Latino caregivers assumes that Latinos in the United States still are socialized within a paradigm that views obligation and respect towards elders as part and parcel of family life (Ibarra). Based on her study of Latina caregivers, Ibarra posits that women learn about caregiving from their experience in family groups. Ibarra argues that family caregiving lessons delineate a gendered division of labor. Moreover, the ideology of familism holds that caregiving for elders is a family obligation for all family members, with specific tasks distributed on the basis of availability and willingness. However, the enactment of familistic cultural scripts that mandate respect for elder autonomy, preservation of elder dignity, and maintenance of the elder’s role within the family typically falls upon women, particularly unmarried daughters, granddaughters, or daughters-in-law, rather than on men. It is predominantly women who enact care, and develop and perform the ethics of care.
Ibarra drew on the work of Tronto and other feminist scholars (e.g., Harrington Meyer, 1999
) who have argued that caregiving responsibilities are typically assigned to women due to cultural assumptions of women as natural nurturers and caregivers, and cultural expectations that women should
prioritize family needs over individual desires. Feminist scholars raise a distinction between caring about
others (which is viewed as a masculine form of caring) and caring for
others, which is construed as a moral position related to the psychological importance of being in
relationships and caring for others within the context of those relationships. Thus, for women, the issue is not whether one should care for another, but how
one should care for
and how one should deal with conflicting caring concerns (Tronto 1993
). Furthermore, Harrington Meyer (1999)
, among others, highlighted the importance of class and the power differentials between men and women, which can impact caregiving. Although feminist scholars have raised a number of important questions concerning the values and performance of the ethics of care among women, they have cautioned against universalistic assumptions, as few studies have examined how women of various ethnic origins and class backgrounds experience or negotiate the challenges of caregiving.
defined ethics of care as “behavioral scripts” which mandate that elders should maintain their former roles within the family and that, to the extent possible, their autonomy should be honored. Furthermore, Ibarra (2003)
and Valle (1998)
are just two of the many scholars who have noted that, among U.S. Latinos, caregiving is guided by an ethics of care that responds to cultural scripts, to the ideals of family harmony and cohesion. Thus, caregiving of elders ought to embody the noblest aspects of familism: sacrifice of individual or personal desires or goals in the service of others, altruism, collectivism, and interdependence. Furthermore, older adults should be treated with respect. Emerging from these ethics of care is a model of care grounded in the belief that la tercera edad
(the third and final cycle of life) entails a need for increased assistance from family, an increasing transition of responsibility across the generations as the elderly individual’s mind and body begin to follow a normal process of aging. Consequently, caregivers should be attentive to and supportive of the elders’ routines because these provide comfort and a sense of identity. Likewise, because elders will recognize that the end of their life is near, they may become afraid and need consideration, affection, and family members who can simply be there, to hear their stories and to bear witness to their lives and final bereavement related to the losses experienced in old age (Kleinman, 1988
A number of studies of Latino elderly with dementia have found that their caregivers are less likely to seek outside sources of support, are more likely to rely on family, and that the elders typically receive less medical care than European-American elderly adults in similar circumstances.. Latino caregivers are unaware that behavioral symptoms of dementia can be treated medically, which could result in a reduction of the elder’s distress and potentially assuaging caregiver stress (Harwood et al., 2000
; Hinton, Haan, Geller, & Mungas, 2003
). Few researchers however have examined how dementia may intersect with cultural ideology and the ethics of care to produce practical models of care rooted in the Latino value of family care (Ibarra). Furthermore, little information is available on how Latina caregivers attempt to honor and respect elder autonomy in the face of the elder’s diminishing abilities and at times frightening behavioral symptoms.
In this article we examine how cultural scripts and a behavioral ethics of care within a context of family both establishes and nuance caregiving for a U.S.-born Latina daughter. We discuss continuities and disjunctures, transitions and tensions in the caring relationship between this woman and her mother.