Preparedness for Caregiving Among Middle Eastern and North African Arab American Informal Caregivers of People with Dementia: A Multimethod Study

Abstract

Background: Dementia is increasingly prevalent in the Middle Eastern and North African (MENA) populations. Informal caregivers play an essential role in dementia care; however, their caregiving experiences remain underexamined in the MENA region, and even less is known about these experiences among MENA Arab Americans (MENA-AA). People with dementia require specialized and often complex care, making caregiver preparedness essential for managing caregiving demands, reducing caregiver stress, and improving care outcomes. Caregiver preparedness is the caregiver’s confidence in their knowledge, skills, and abilities to carry out daily caregiving tasks and manage emotional demands over time. Despite its importance, little is known about the factors that predict caregiver preparedness among MENA-AA caregivers or how sociocultural contexts influence their preparedness to provide care. This gap limits the development of culturally responsive interventions and support systems tailored to this underserved population. Aims: To 1) Identify the predictors of caregiver preparedness among MENA-AA informal caregivers of people with dementia, focusing on dementia knowledge, caregiver self-efficacy, caregiving competence, perceived and received social support, sociocultural beliefs and norms; 2) Assess MENA-AA caregivers social support needs and explore discrepancies between the two; and 3) Explore how sociocultural beliefs and norms of caregiving among MENA-AA impact their preparedness to provide care for people with dementia. Methods: This dissertation employed a multimethod design. Manuscripts 1 and 2 employed cross-sectional quantitative designs, with data collected via online surveys. Manuscript 2 also included open-ended responses, which were analyzed using qualitative descriptive content analysis. Quantitative analyses were conducted using Stata 19. Manuscript 3 used a qualitative design, with data collected through semi-structured focus group discussions and analyzed using inductive thematic analysis, supported by Nvivo 15. Results: A total of 150 caregivers participated; 145 were included in inferential analyses due to missing data. In Manuscript 1, caregiver competence emerged as the strongest predictor of preparedness (B = 0.14, p < 0.001), followed by caregiver self-efficacy (B = 0.007, p = 0.045) and received social support (B = 0.005, p = 0.016). Dementia knowledge, perceived social support, and sociocultural beliefs and norms were not significantly associated with preparedness. In Manuscript 2, family (84.9%) and healthcare professionals (81.4%) were the most frequently endorsed sources of support, while emotional support (82.7%) was the most highly rated type of support. Common barriers included distance to support services (46.2%) and lack of available options (42.1%). Perceived and received social support were moderately correlated (ρ = 0.44, p < 0.001). Caregivers reported high perceived social support (57.24% high support); however, perceived support was significantly higher than received support (z = 7.98, p < 0.001), with a median discrepancy of 18.19 points and 76.6% reporting higher perceived than received support. In Manuscript 3, qualitative findings from three focus groups identified five interrelated dimensions: the influence of sociocultural context on caregiver preparedness, mechanisms for enhancing preparedness, existing barriers to caregiver preparedness, caregiving challenges, and rewards and meaning in caregiving roles. Conclusion: Overall, these findings highlight that caregiving preparedness is primarily driven by competence, confidence, and received (enacted) support, while sociocultural factors influence caregiving orientation rather than directly predicting preparedness. This dissertation underscores the need for culturally responsive, skill-based, and accessible interventions to enhance preparedness and better support MENA-AA caregivers, ultimately improving outcomes for both caregivers and people living with dementia.