Background and Significance: Alzheimer’s disease impacts 5.5 million Americans and more than 16 million Americans currently provide care to a relative or friend living with Alzheimer’s disease or other dementias. Latinos are more likely to use unpaid, informal caregivers than non-Latino Whites and current projections estimate that the number of Latinos affected by Alzheimer’s disease will increase to 3.5 million by 2060. The negative impact of caregiving on physical, psychosocial, and financial outcomes for the caregiver has been well documented. Although evidence-based interventions have been shown to improve caregiver outcomes, their effectiveness in ethnically diverse populations, living in rural settings, has not been well-established.
History: In the spring of 2016, nursing faculty from UT Health San Antonio were invited by the Frio County Translational Advisory Board (TAB) to explore opportunities to partner with community members living in a rural region of south Texas, populated predominantly by Latino persons, to address concerns surrounding family caregivers. Nursing faculty subsequently attended a scheduled TAB meeting to learn more about community concerns. Since that time, school of nursing faculty and students have been engaging with community members to better understand needs and existing assets and to offer educational support and resources as requested.
Methods: This descriptive study, guided by principles of community based participatory research, utilized a mixed methods approach to address study aims. A preliminary focus group (N=21) was held in the summer of 2016. A second focus group (N=7) was held in the summer of 2017 to follow-up on preliminary findings. Focus groups, which were co-facilitated by a community member and a faculty member, were audiotaped and transcribed verbatim. Content analysis was conducted by two members of the research team and shared with community partners. In addition, a survey was developed to better understand needs and service utilization, and to assess the impact of caregiving on the caregiver. Community members reviewed the appropriateness of the survey prior to implementation. The survey assessed demographics, caregiver/recipient health information, service utilization, and included the Caregiver Assistance Scale (CAS), the Caregiver Reaction Assessment (CRA), and the Rand 36-item Health Survey 1.0. Data collection occurred between the spring of 2017 and the spring of 2018. Descriptive statistics were examined as appropriate.
Findings: Results from the initial focus group revealed interest in establishing a support group for all caregivers within the community and educational sessions on Alzheimer’s disease, other chronic illnesses, and resources. Themes from the follow-up focus group consisted of confusion and challenges surrounding access to services, emotions surrounding accepting changes and assistance, and finding strength and resilience in caregiving role. Participants completing the survey (N=29) were predominantly white (79%), Latino (83%), female (79%), and identified English (86%) as their primary language, with a mean age of 57 (range 20 to 84) years. Caregivers consisted primarily of adult children (41%), with 48% of caregivers living with care recipients. Caregivers reported providing care for a mean of 7 (range 1-35) years. The mean average of hours spent providing care in a week was 44 hours. Most of the caregivers (80%) reported having some degree of difficulty finding services to support them, with 41% indicating either very great or extreme difficulty in finding services. Less than 25% of caregivers were utilizing the range of services traditionally available for caregivers. However, 41% of caregivers reported using a homemaker to assist with chores and 31% reported using home nursing services. Participants reported providing a moderate amount of assistance (M=48.72, SD =20.97) for their relatives in activities and instrumental activities of daily living. Participants reported that caregiving disrupted their daily schedule to a small to moderate degree (M=2.61, SD=1.03). Caregiving had, in general, a moderately negative impact in the following areas: family support (M=3.22, SD=1.05), finances (M= 3.42, SD=0.87), and health (M = 3.64, SD = 0.76). Yet participants reported their general health as moderately good (M = 66.30, SD = 22.81), having overall good physical functioning (M=83.27, SD = 19.08), social functioning (M = 70.67, SD = 30.61), and emotional well-being (M=70.15, SD = 25.23), and experiencing lower levels and effects of pain (M = 71.11, SD=25.34). Participants reported moderate role limitations from physical health problems (M=61.54, SD=47.03) and emotional problems (M=65.43, SD=42.85) and slightly less favorable outcomes in the area of energy/fatigue (M=58.85, SD=25.97).
Conclusion: Efforts over the last two years have supported the development of positive working relationships among family caregivers and community and academic partners. Community feedback has informed ongoing educational sessions, sharing of resources, and outreach to caregivers in surrounding communities. Community and academic partners are reviewing findings to prioritize next steps with the goal of designing interventions or translating existing evidence-based interventions into a program of support that meet the unique needs of the community.
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