The Caregiving Experience among Hispanic Caregivers of Dementia Patients
Mier, Nelda, Journal of Cultural Diversity
Abstract: This research reviewed studies that investigated factors influencing the caregiving experience among informal Hispanic caregivers of dementia patients. This review identified 24 journal articles published between 1985 and 2003. Variables studied were depression and social support. In addition, methodological issues were detected such as sampling bias and multiple measurements. This review concluded that there is a need for an extensive, in depth research of the caregiving experience among Hispanics and further research needs are discussed.
Key Words: Nursing, Hispanic Caregivers, Dementia Patients
The health status and healthcare needs of Hispanic informal caregivers of individuals suffering from dementia have become a significant issue as the Hispanic population has increased rapidly and has become the largest minority group in the United States. There is, however, a scarce literature exploring what is known about the dementia caregiving role and its importance among the Hispanic population, about the caregiving experience effects on the physical and mental nealth of Hispanic caregivers, and/or about existing services and interventions for Hispanic caregivers of dementia patients.
Understanding the dementia caregiving experience is of crucial importance. An expanding body of research based mainly on samples predominantly Anglo suggests that informal caregivers of elderly individuals suffering from dementia are valuable assets for the American healthcare system. Informal caregivers may offer to an elderly demented family member the opportunity to be cared for in the most humane way possible, and at the same time informal caregivers may play an important role in delaying institutionalization of dementia patients and, consequently, in reducing social and economic costs (Arno, Levine, & Memmott, 1999). Yet, caregiving for an elderly person suffering from dementia can be an overwhelming experience resulting in negative health outcomes for the caregiver. Studies have shown that caregivers of dementia patients experience stress, burden, and/or depression (Braekhus, Oksengard, Engedal, & Laake, 1998; Brodaty & Luscombe, 1998; Donaldson, Tarrier, & Burns, 1998; Leinonen, Korpisammal, Pulkkinen, & Pukuri, 2001; Lim, Sahadevan, Choo, & Anthony, 1999; Prescop, Dodge, Morycz, Schulz, & Ganguli, 1999; Sparks, Farran, Donner, & Keane-Hagerty, 1998).
Extensive findings about the dementia caregiving experience based on Anglo samples, however, may not truly represent the experience and needs of other ethnic groups (Connell & Gibson, 1997; Yeo, 1996). If ethnicity can be conceptualized as symbols that individuals use to create identity and meaning and to act, think or feel (Hinton, Fox, & Levkoff, 1999; Phinney, 1996), there is not doubt that the caregiving experience "can be shaped by culturally-based ideas about the caregiver's role, idioms of distress or "burden," ideas about what constitutes "good" or "bad" care, family interactional styles, and views of "normal" and "abnormal" aging" (Hinton et al., 1999, p. 407). Thus, ethnic differences in dementia illness experiences have received increased attention in the past ten years by the American public sector. According to Aranda (2001), there are relevant governmental and non-governmental efforts that highlighted the need for the inclusion of racial and ethnic minorities in research related to dementia, including (1) the federal government requirement to include women and minorities in federally funded research, (2) a workshop held at the 52nd scientific meeting of the Gerontological Society of America in 1999 presenting a series of papers related to this ethnic/racial and research issue, (3) a new wave of federally sponsored studies to address issues of recruitment and retention of older minority adults, and (4) the 1999-2003 Long Range Plan of the National Institute of Disability and Rehabilitation Research.
Given the importance of the growing Hispanic population there is a need for a comprehensive review of recent research about Hispanic dementia caregivers not only exploring the association between ethnicity and the caregiving experience, but a review that would also describe and analyze findings about other aspects of the dementia caregiving such as difficulties in accessing healthcare services, existing interventions for Hispanic caregivers, and cultural assessments, among other issues. …