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Correspondence: Address correspondence to Dolores Gallagher-Thompson, Older Adult and Family Center, VA Medical Center, and Stanford University School of Medicine, 795 Willow Road, Mail Code: 182C/MP, Menlo Park, CA 94025. E-mail: dolorest{at}stanford.edu
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Abstract |
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 TOP Abstract Barriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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Key Words: Caregiving • Stress • Hispanic • Women • Aging
Two widely recognized demographic trends make informal caregiving of elder impaired relatives an increasing reality in this country (U.S. Bureau of the Census, 1992). First, the proportion of oldest-old (that is, aged 80 and older) is steadily rising. These are the individuals most likely to have chronic debilitating illnesses requiring assistance to complete normal activities of daily living. Second, there is a significant demographic shift from an Anglo-European society to a multiracial, multicultural one. For example, there are currently over 35 million Latinos (12.5% of the population) in the United States, up from 24 million in 1992 (U.S. Bureau of the Census, 2000). Approximately 5 million of these (or 13% of the total) are over the age of 50. According to these new census data, Latinos are the fastest growing segment of the population over age 65, with projections indicating that there will be 12.5 million aged 65 and older by the year 2050. It is estimated that at least 4.5 million of them will have need for long-term care, resulting from the presence of Alzheimer's disease or other forms of dementia (where prevalence increases with advancing age) as well as other debilitating chronic health conditions such as significant diabetes and hypertension, which are common among elderly Latinos (Markides, Rudkin, Angel, & Espino, 1997). Consequently, the number of Latino families undertaking the informal role of caregiving is growing and will continue to do so.
Although there is no one commonly accepted definition of caregiving, it is generally thought that assistance with personal care activities, such as bathing or dressing, constitutes care above and beyond what is typical between spouses or between parents and adult children. Assistance with other activities of daily living, such as balancing the checkbook, is also often included. In a recent multiracial/ethnic telephone survey of over 1,500 family caregivers (including persons grouped as Whites, Blacks, Hispanics, or Asians) caregiving was defined as "providing unpaid care for a relative aged 50 or older to help take care of themselves" including help with personal needs, household chores, arranging for services, or visiting regularly (National Alliance for Caregiving/American Association of Retired Persons, 1997, p. 6). Nearly one in four U.S. households contained at least one caregiver, resulting in an estimated 22 million caregiving households.
In terms of racial/ethnic differences, this survey found that Hispanic caregivers were most often of "the sandwich generation": they were younger than White caregivers (40 vs. 47) and had more children under 18 at home (58% vs. 38%). Household income was significantly lower than Caucasians (median of $27,500 vs. $35,000). Also, as in other studies (Connell & Gibson, 1997), Hispanics more often cared for their parents, parents-in-law, or grandparents than they did for their spouses. Roughly 20% of the total sample (similar for each racial/ethnic group) cared for a relative with dementia (over 5 million households at the present time).
Why is this significant? Because dementia is one of the most devastating conditions that an older person can develop, characterized by progressive loss of cognitive function and self-care abilities over a period of years, combined with personality changes and often (in the later stages) certain psychotic symptoms such as hallucinations and paranoia. Recently Ory, Yee, Tennstedt, and Schulz (2000) reported that caregivers of dementia patients experienced more role stress, psychological distress, emotional strain, family conflict, and interference with other activities than caregivers of frail elder relatives without dementia. In general, studies with Anglo dementia caregivers found that they are more likely to be depressed, anxious, angry, and in poorer health than noncaregivers (reviewed in Schulz, O'Brien, Bookwala, & Fleissner, 1995). A small number of studies with Latino dementia caregivers have found high rates of depression when compared with other groups (see Adams, Aranda, Kemp, & Takagi, 2002), along with dissatisfaction with family support for caregiving and perceived negative impact of caregiving on their physical health (Gallagher-Thompson, Areán, et al., 2000; Polich & Gallagher-Thompson, 1997). However, caution is needed in generalizing from the relatively few current studies with Latinos compared with the large literature on the impact of caregiving on Whites/Anglos.
Interventions aimed at reducing depression and burden have shown promising results among White/Anglo caregivers (Bourgeois, Schulz, & Burgio, 1996). However, it is virtually unknown whether similar interventions would be effective with Latino caregivers, because few studies of this nature have included Latinos (Connell & Gibson, 1997; U.S. Department of Health and Human Services, 2001). According to several social scientists (e.g., Valle, 1989, 1998), the major factor contributing to this underrepresentation is difficulty recruiting Latinos into such research. This is particularly true for dementia-related research because of the stigma that this disease carries with it, along with time and energy demands that intervention programs place on participants (e.g., travel to unfamiliar settings, completion of multiple questionnaires). Yet the growing number of Latino caregivers demands that further research be conducted to better understand their experience and to provide empirically supported services to reduce their distress.
In this article we will review barriers to recruiting Latino caregivers into intervention research, then discuss cultural values to consider in designing effective programs. Also included are specific strategies to address and/or overcome at least some of these barriers.
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Barriers to Recruitment and Research Participation |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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First, the literature often attributes Latino's low utilization of mental health services to stigma regarding mental illness and help seeking (Aranda, 2001; Rogler, Rodriguez, & Malgady, 1989). This may result in part from the widely held cultural value of familismo whereby families will be the first, and often the only, place to turn to for help (Sotomayor & Randolph, 1988). To discuss mental health problems with outsiders is tantamount to tarnishing the image of the older individual and his/her family in the community (Sanchez-Ayendez, 1988). Because there is additional stigma associated with a dementia diagnosis, these families are even more reluctant to seek help—particularly because most dementia care programs are based on a support group model.
Second, lack of availability and accessibility is another major barrier to mental health service use among Latinos (Miranda, Azocar, Organista, Muñoz, & Lieberman, 1996). Caregiving research conducted with non-Hispanic Whites found that most recruitment takes place in dementia diagnostic centers, adult day care programs, and community support groups. However, Latinos do not typically use these services at the same rate as their Anglo counterparts (Olin et al., 1997), due to such factors as limited knowledge about dementia-related services, language barriers, and poor experiences with the service system (Starett, Todd, Decker, & Walters, 1989). Therefore, at present, Latino caregivers have less access to programs offered in or through such centers.
Third, lack of education about dementia as a physical (not mental) illness may also contribute to the low rates of Latinos participating in dementia-related research. Overall, Latinos are less educated than most other groups, with only about 51% completing high school, and far fewer entering or graduating college (O'Brien, 1993; U.S. Department of Health and Human Services, 2001). This is pertinent to our discussion because individuals with minimal education are apt to perceive dementia incorrectly either as part of "normal aging" or the result of such factors as "el mal de ojo" (the evil eye), "nervios" (nerves), or the brain "drying up" leading to "como un nino" (child-like) behavior (Gallagher-Thompson, Talamantes, Ramirez, & Valverde, 1996). Lack of current information about dementia as a progressive, degenerative medical condition has direct consequences on whether families pursue a diagnostic assessment and/or understand the value of research participation—either for themselves or their loved one (Olin et al., 1997).
Fourth, language barriers are also a major concern. Public awareness campaigns on Alzheimer's disease are usually delivered in English rather than Spanish; yet Spanish is the preferred language for many Latino caregivers (Gallagher-Thompson et al., 1996). As a result, monolingual caregivers fail to receive current information and must depend on their English-speaking family members to interpret the information they obtain (Valle, 1989). Failure to provide information and services in Spanish may not only be a barrier for monolingual Latinos: highly acculturated, middle-class, well-educated Latinos often prefer to speak Spanish when discussing personal matters (Echeverry, 1997). There will continue to be underutilization of excellent programs until services and research projects are available in the Spanish language.
Fifth, time constraints also limit research participation. Latino caregivers are often daughters working outside the home in addition to caring for their elder relative. Attending weekly intervention program sessions may be considered burdensome rather than helpful (Areán & Gallagher-Thompson, 1996). Other practical barriers include unreliable transportation and difficulty finding someone to care for their family member in their absence; these are more common among Latinos than Caucasians (Leaf, Bruce, Tischler, & Holzer, 1987).
Lastly, cohort differences are an additional potential barrier. Older Latino caregivers, in particular, may not feel comfortable discussing their distress associated with caregiving responsibilities. Maldonado (1985) found that younger and more assimilated caregivers were more likely to attend support groups and gather information than the older, more traditional generation. Terminology that is used to describe caregiver stress may also discourage participation. For example, John and McMillian (1998) found that the term burden was not acceptable to many Mexican American caregivers. This may reflect the prominence of filial duty among Hispanics whereby a strong sense of obligation toward aging parents is held, along with the expectation that care will be provided at home. To acknowledge the experience of burden is tantamount to complaining about being caregivers, which would not be culturally appropriate.
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Cultural Factors That Affect Latino Caregivers' Participation in Research |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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A major value shared amongst Latino cultures is that of the family, which is regarded as the most important institution for Latinos regardless of their country of origin, length of residence in the United States, or social class (Sanchez, 1992). This emphasis is termed familismo, referring not only to the importance of family over the individual, but also to family unity and role division (Villa, Cuellar, Gamel, & Yeo, 1993). This has implications for the kind of caregiving intervention research that one would design for this community. For example, Latino daughters know that they are expected to be major care providers for their aging parents and to care for parents at home as long as possible, thus avoiding or strongly delaying institutional placement. This suggests the salience of research that will reduce caregiver stress and promote the family working collaboratively to share the caregiving role and minimize "burn-out" of the adult daughter or daughter-in-law (Maldonado, 1985; Valle, 1998). However, changes in society may be modifying these expectations (Hazuda, Wood, Lichtenstein, & Espino, 1998), precipitated by value differences between generations and the inexorable changes resulting from occupational mobility and higher educational attainment. Nevertheless, research programs that are more family-oriented and that promote the value of familismo are likely to be effective, at least at the present time.
Another key value in the Latino culture is called personalismo, which refers to the importance of proper interpersonal relations and social interactions (Gillis et al., 2001). Interactions between Latinos and professionals are expected to be warm and personal, and to build confianza (trust), respeto (respect), and dignidad (dignity). An attitude of respect and sincerity by the research staff is critical to establish trust between the Latino community and the research program (Areán & Gallagher-Thompson, 1996). Other values such as presentismo (focusing on short-term rather than long-range goals) and jerarquismo (the hierarchical social structure or relative positions people occupy with respect to each other that influences how they interact) also need to be understood and addressed when designing outreach and intervention, so that the program will be seen both as inviting and as culturally compatible (Villa et al., 1993).
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The Palo Alto VA/Stanford Experience in Caregiver Research |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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Next, with small amounts of funding from several sources, we conducted another set of focus groups to develop an educational program for professionals working with this community. The goal of this 3-year program (Projecto Ahora) was to train professionals in the detection of dementia in monolingual older Hispanics and to make them knowledgeable about options for service available in their locations. By conducting this education in Spanish (when appropriate) and making it very clinically relevant (through the use of role playing, videotaped demonstrations, etc.), we increased participants' use of referrals as well as their self-reported sensitivity to Hispanic culture and family values (Gallagher-Thompson, Haynie, Takagi, Valverde, & Thompson, 2000). These efforts also helped to maintain a base of community support while new intervention research was developed (see Recommendation 7 below).
Against this backdrop we initiated a larger study designed to evaluate the efficacy of our enhanced psychoeducational program to reduce caregivers' distress, as part of a multisite project referred to as REACH: Resources to Enhance Alzheimer Caregivers Health. At the VA/Stanford site, we focused on Latino and Anglo women caregivers. A description of the overall REACH project (conducted at six sites nationally with a total sample of over 1,000 caregivers) can be found in Coon, Schulz, and Ory (1999). Information on how advertising materials were developed, how translations were conducted, how accessibility problems were handled (e.g., reimbursement for transportation), and what strategies were used for retention can be found in Gallagher-Thompson, Areán, and colleagues (2000). Brief examples of our experiences are also included in Recommendations 2, 3, 5 and 6, below. Finally, a description of our site-specific outcome data (indicating that Latino caregivers responded well to this program) is currently in press (Gallagher-Thompson et al., 2002).
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Specific Recommendations for Recruitment and Retention of Latinos in Caregiving Research |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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1. Hire Bilingual/Bicultural Staff in Key Positions
In order to reach the intended population, as well as collect interview data and implement intervention activities, staff should be individuals from the same (or similar) cultural and linguistic background. Clearly, Spanish language fluency is necessary so that interventions can be conducted effectively with non-English speaking Latina participants. Interventionists must also be sufficiently skilled in mental health issues, group process, and family dynamics to be able to conduct sensitive discussions using the nuances of the language effectively (Gallagher-Thompson, Areán et al., 2000; Areán & Gallagher-Thompson, 1996). Moreover, creating multicultural project teams supported by senior staff helps extend cultural awareness and competence so that all staff can learn from issues raised.
2. Use a Conceptual (Rather Than Literal) Translation of Assessment Instruments and Recruitment and Intervention Materials
A conceptual translation is needed to preserve the meaning of key concepts and to make material user-friendly for participants (Hinton, Fox, & Levkoff, 1999; Valle, 1998). To ensure that caregivers understand assessment measures, it is recommended that instruments be pilot tested to obtain caregivers' feedback. Next, a professional team of translators (familiar with issues of mental health and dementia) should conceptually translate the material into Spanish and then back-translate into English (Brislin, Lonner, & Thorndike, 1973). In general, if specific measures and/or intervention materials are to be used in various sites or with different Hispanic subgroups, then the conceptual translation needs to be evaluated by experts in those settings, to be sure that regional differences are accommodated. Consensus conferences are typically required to work out specific variations of language and meaning so that uniformity can be maintained across diverse Spanish-speaking participants.
3. Develop Culturally Appropriate Outreach and Advertisement Materials
This is critical for research success. However, as described by Guo, Levy, Hinton, Weitzman, and Levkoff (2000), labeling family members as demented in advertising materials can create a significant barrier to recruiting families, because this disease is still highly stigmatized in the Latino community. We recommend using terms such as significant memory loss or no longer able to do everyday things, like cooking dinner in recruitment materials. It is helpful to emphasize what benefits will accrue to the care receiver (not necessarily the caregiver) because that will make it more culturally acceptable to enroll in the program. It is also useful to specify what the research will give to the participant, such as free mental health services and skills helpful in dealing with dementia-related stressful situations. Attention should also be given to how strict the entry criteria are as this will influence Hispanic participation. Provision of referrals to other service agencies for those who do not meet criteria for acceptance is essential to maintain good community relations.
4. Develop or Tailor Interventions to Be Culturally Relevant and Appropriate
Whether newly designed or tailored from an existing approach, caregiver interventions must incorporate key cultural values (Henderson & Gutierrez-Mayka, 1992; Henderson et al., 1993; John & McMillian, 1998; Valle, 1998). Many older Latinos have close ties to their church; thus, programs that are sanctioned by church officials, conducted on church grounds or incorporate spiritual themes or references to religious coping tend to be well received (Henderson et al., 1993). Other cultural values of importance have been discussed above; some examples from our intervention program may be helpful here to elucidate this point. We incorporated personalismo by getting to know more about participants (besides their caregiving roles and situations) through the use of platicar or the exchange of pleasantries at the beginning of each session. This process served as a bridge to intervention material and facilitated interventionists being viewed as a part of participants' regular, trusted support system. Similarly, in order to support the value of familismo, we invited family members to participate in the program along with the designated main caregiver. This invitation was much more often both welcomed and accepted by Latino than Caucasian families.
5. Improve Accessibility by Addressing and Resolving Practical Barriers
Special attention needs to be paid to the practical barriers many Latinas face when considering whether to participate in research projects. These include whether there is any direct cost involved, how much travel time and effort are required, and how the frail elder relative will be taken care of while the caregiver is gone. Because the modal Latino caregiver is a middle-aged woman employed outside the home during the day, evening and weekend times for interviews and interventions need to be offered. To improve accessibility, research activities should be done either in the home or at community sites (e.g., senior centers or churches) that are conveniently located. Moreover, as a token of appreciation, caregivers should be paid for each completed assessment and they should be reimbursed for legitimate transportation costs and sitter services, as needed.
6. Use Specific Strategies to Maximize Retention
Retention in lengthy longitudinal research is another issue of concern. Although there are several valid reasons why caregivers drop from studies after enrollment (e.g., moving away), other reasons, such as perceiving the project as "too burdensome" to want to continue, can and should be addressed directly in the project design and in its ongoing activities. For example, researchers need to do what they can to minimize burden and to make caregivers feel valued for their participation. This can be done in many ways: for example, staff telephone lines with bilingual/bicultural individuals who follow up personally by phone whenever assessment appointments or treatment sessions are missed. Birthday and holiday cards should routinely be sent, along with thank-you notes for completed assessments. Participants should also be given individualized information and referral to meet their changing needs over time, as well as announcements about other relevant research, if they are interested.
7. Provide Feedback to the Community
To facilitate a sense of closure with a given project before a new one begins, and to formally thank the various parties involved, we recommend that specific feedback regarding project findings be given to the community, the power and support networks, and the participants themselves. Researchers can schedule formal staff presentations for agency personnel, give community-oriented workshops or lectures (in Spanish), and develop brief newsletters to reach a wide audience. By offering two-way communication and access, researchers can continue to obtain feedback as to current needs and preferences, thus stimulating new research agendas and partnerships for the future.
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Conclusions and Final Suggestions |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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First, interventions that provide a peaceful environment, with little focus on actual caregiving issues, may be both well received and effective for some Latino caregivers. Pilot work from our center, using a meditation-based approach for stress reduction, was very encouraging in that regard (Waelde & Gallagher-Thompson, 2001). For others, there is concern about the impact of caregiving on their physical health. Many report that they do not keep their own medical appointments because of caregiving demands. For them, it may be that programs in Spanish that emphasize health promotion and wellness activities will be both appropriate and helpful. Second, new research will be underway soon by our group to study both physiological and psychological indices of stress in Latino caregivers and to link those indices with health status and wellness measures. The "mind–body" connection is one that clearly needs further study. Third, studies are needed to evaluate the effectiveness of psychotherapy for depressed Latino caregivers. Because depression is so common in this group, and such a costly public health problem in its own right, it is reasonable to determine the best intervention strategies for this problem. Finally, we learned (in our most recent set of feedback interviews) that Latino caregivers wanted more information on grief, dying, and bereavement issues, as well as the opportunity to discuss such "taboo" topics as how to do end-of-life planning. We would encourage other clinical researchers to consider creative inclusion of such topics in their programs with the hope that knowledge can be advanced in this field more rapidly in the next decade than has been the case in the past 10 years.
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Appendix |
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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Note that throughout this article, we use the terms Hispanic and Latino as overall categories, to refer to persons with ancestry from the countries of Mexico, Cuba, South and Central America, and Latin America who self-identify as Hispanic, as well as those from the U.S. territory of Puerto Rico, as is conventional in much social science literature. However, we recognize that this terminology does not do justice to the tremendous heterogeneity found among these various peoples, as discussed in this article.
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Footnotes |
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This research was supported in part by National Institute on Aging Grant AGO 13289 and National Institute of Mental Health Grant MH 19104. We wish to express our appreciation to all the Latino caregivers who have participated in our research over the years, from whom we have learned so much. 
1Older Adult and Family Center, Stanford University School of Medicine and VA Palo Alto Health Care System, Menlo Park, CA.
2MIRECC (Mental Illness Research, Education, and Clinical Center), VA Palo Alto Health Care System, Palo Alto, CA.
3Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA.
4Goldman Institute on Aging, San Francisco, CA.
5Department of Psychiatry, University of California, San Francisco.
Received for publication March 11, 2002. Accepted for publication June 21, 2002.
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TOPAbstractBarriers to Recruitment and...Cultural Factors That Affect...The Palo Alto VA/Stanford...Specific Recommendations for...Conclusions and Final...AppendixReferences |
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