Impact of Culture on Stress and Coping: The Experiences of Latina Dementia Caregivers Mayra Calatayud California State University, Long Beach May 2012

Introduction By 2050, the older adult population is projected to more than double and Latino older adults (65+) will make up 20% of the population (U.S. Census Bureau, 2010). The most common type of dementia in the United States is Alzheimer’s disease (Alzheimer’s Association, 2010). It is projected that by 2050 between 11 million to 16 million older adults aged 65 and older will have Alzheimer’s disease (Alzheimer’s Association, 2010). The increased number of older adults with Alzheimer’s disease and related dementias has a great impact on caregivers and their families (Alzheimer’s Association, 2010). In 2008, the National Alliance for Caregiving (NAC) and Evercare conducted the first national study on Latino caregivers, which estimated that there were 8,147,000 Latino caregivers in the United States (NAC & Evercare, 2008). Latino caregivers reported a higher level of burden compared to all other ethnic groups (NAC & AARP, 2005). This Study addressed the following questions: 1. How do Latina dementia caregivers experience stress? 2. How do Latina dementia caregivers cope with stress? 3. How do cultural values influence the stress and coping experience of Latina dementia caregivers?

Social Work Relevance Due to the increased numbers of Latino older adults and family members involved in their care, it is vital for social workers to become more knowledgeable about the needs of Latina dementia caregivers. There is an increased need for conducting research on the experiences of Latino caregivers (Pinquart & Sorensen, 2005). The goal of this study was to provide research-supported information to social workers on the needs of Latina dementia caregivers.

Cross-Cultural Relevance Like other caregivers, Latino caregivers are more likely to be female. However, compared to non-Latino caregivers, Latino caregivers are more likely to be younger and be caring for a younger care recipient (NAC & Evercare, 2008). Compared to other non-Latino caregivers, Latino caregivers reported being in higher burden situations, such as spending more hours providing care and assisting the care recipient with more activities of daily living (NAC & AARP, 2005; NAC & Evercare, 2008). Since individuals with limited proficiency in English belong to ethnic groups, more research is needed to address language barriers and access to mental health services among ethnic groups. Understanding family responsibility among ethnic caregivers has implications for developing caregiver services that are culturally-relevant and family-centered (Scharlach et al., 2006). An increase of cultural sensitivity is needed to collaborate and develop effective interventions that assist Latino caregivers (Gallagher-Thompson et al., 2003; Scharlach et al., 2006). Services should be appropriate for cultural groups and community organizations should collaborate with cultural communities to plan and deliver services (Scharlach et al., 2006).

Methods A. Sample/Sampling Method: The sampling approach for this study was non-probability, snowball sampling. The target sample size for the study was 12 Latina caregivers. Latina caregivers were identified with the assistance of people personally known to the researcher and recommendations from caregivers who participated in the study. B. Data Collection Procedures: Participants were scheduled for an interview that lasted from 45 to 60 minutes in length. The semi-structured interviews were scheduled and arranged to meet in a location of the participants’ choice, either in their home or in an adequate public setting. Before beginning the interview, the participants were asked to sign a consent form. C. Qualitative Interview Guide: The researcher developed an interview guide for the purpose of the study. The questions were a set of open-ended questions that allowed the participant to describe, in-depth, their caregiving experience. The questions asked the participants about their experiences as caregivers for a family member with dementia, which included questions about stress, coping, caregiver services, and cultural and/or family values and beliefs about caregiving.

Methods The following are some examples of the questions that were asked to the participants: 1. What were the circumstances that led you to become a caregiver? 2. Describe the challenges you have encountered being a caregiver to your family member with dementia. 3. What has helped you cope with caregiver stress? 4. What are your cultural/family values and beliefs about caregiving? 5. What services have you used to help you care for your loved one? D. Data Analysis: As each interview was completed, the researcher transcribed the audio taped information word for word. Once each interview was transcribed, the researcher explored for patterns and themes that emerged during the interview. As categories were established for each variable, the researcher was able to code each response under different categories. This was done by counting the number of times a particular pattern was repeated and developing a table to keep track of categories of responses. As patterns were found and analyzed, tentative conclusions were developed.

Results A. Themes 1. Forgetfulness – Eleven (91.7%) of the participants reported that the most common sign of dementia by the family member was forgetfulness. 2. Filial Responsibility - The top reason that led participants to become caregivers for their family member with dementia was filial responsibility (seven or 58.3%). Filial responsibility was also the top cultural and/or family value and belief about caregiving reported by the participants (10 or 83.3%). 3. Difficult Behavior – The top challenge reported by the participants in providing care to their family member with dementia was dealing with difficult behavior (eight or 66.7%). 4. Spirituality and/or Faith - The top coping mechanisms reported by the participants was spirituality and/or faith (eight or 66.7%)

Results 5. No Impact/Positive Impact – The participants equally reported that caregiving had no impact (eight or 66.7%) and/or a positive impact (eight or 66.7%) on their life satisfaction. 6. Family – Family was the top support system reported by the participants (11 or 91.6%). 7. Services/No Services – Participants reported using few formal caregiver services or no services at all. Four (or 33.3%) participants reported using social service agencies and four (or 33.3%) participants reported not using any outside services to help them with caregiving. 8. Support Group or Program to Share Advice and/or Information - The majority (11 or 91.6%) of the participants described an ideal program would include a support group or program to share advice and/or provide information.

Implications for Social Work The results of this study demonstrate that social workers need to be educated on the stress and coping process of Latina dementia caregivers. Social workers need to be active in assisting Latina caregivers with the challenges associated with the care of a loved one with dementia. Social workers can advocate for caregiving services and programs that help reduce stress and challenges faced by the growing number of caregivers from all ethnicities and races. In doing so, social workers need to be culturally sensitive when designing programs and working one-on-one with diverse caregivers and their families. It is important for social workers to emphasize strengths and resilience in Latina caregivers when evaluating their needs and biopsychosocial risks. By using the strength-based perspective and advocating for culturally-sensitive caregiving programs and services, social workers can empower diverse caregivers, families, and communities to work through the challenges faced by the increasing number of older adults with dementia.

References Alzheimer’s Association. (2010) Alzheimer’s disease facts and figures. Retrieved from documents_ custom/ report_ alzfactsfigures2010.pdf National Alliance for Caregiving & AARP. (2005). Caregiving in the U.S. Retrieved from National Alliance for Caregiving & Evercare. (2008). Hispanic family caregiving in the U.S.: Findings from a national study. Retrieved from data/ Hispanic_Caregiver_Study_ web_ENG_FINAL_11_04_08.pdf Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45(1), Scharlach, A.E., Kellam, R., Ong, N., Baskin, A., Goldstein, C., & Fox, P.J. (2006). Cultural attitudes and caregiver service use: Lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work, 47(1/2), doi: /J083v47n01_09 U.S. Census Bureau. (2010). The next four decades: The older population in the United States 2010 to Retrieved from prod/2010pubs/p pdf