Date on Master's Thesis/Doctoral Dissertation

5-2022

Document Type

Doctoral Dissertation

Degree Name

Ph. D.

Department

Social Work

Degree Program

Social Work, PhD

Committee Chair

Lawson, Thomas

Committee Co-Chair (if applicable)

Prost, Stephanie

Committee Member

Moore, Sharon

Committee Member

Pfeifer, Mark

Author's Keywords

Alzheimer's disease; informal caregivers; caregiver burden; determinants; older adults; Saudi Arabia

Abstract

Caregiver burden in Alzheimer’s Disease (AD) is a significant factor in the deterioration of caregivers’ physical and mental health. Moreover, increased caregiver burden has been associated with the decline in quality of life and the reduced quality of care for the care recipient. However, the level of caregiver burden perceived by informal caregivers of care recipients with AD can be varied with the impact of different factors related to the caregiver, care recipient, and caregiving process. Identifying factors associated with caregiver burden and exploring factors that account for variation in caregiver burden are vital to prevent adverse outcomes of caregiver burden affecting caregivers and care recipients. However, no Saudi studies have identified factors associated with caregiver burden. Additionally, no studies have explored factors that account for variation in caregiver burden in AD among informal caregivers in Arabic countries, specifically in Saudi Arabia. The purpose of this dissertation was 1) to examine the association between particular factors (i.e., care recipient’s age and caregiver’s educational level) and caregiver burden and 2) to explore the ability of contextual variables (Socio-demographic factors of care recipients, Socio-demographic factors of caregivers, and caregiving-related factors), primary stressors (i.e., care recipient stage of Alzheimer’s), and caregiver’s well-being to account for variation in caregiver burden among a sample of Saudi Arabian informal caregivers caring for older adults with AD. Using the existing literature and the modified stress process model of Conde-Sala et al. (2010) as a conceptual framework, this non-experimental research project leveraged primary data collected via a survey of caregivers of older adults with Alzheimer’s in Saudi Arabia. The sample included 182 individuals who completed self-reported online surveys distributed by the Saudi Alzheimer’s Disease Association. The data were analyzed using SPSS version 28.0.1. Pearson’s product moment correlation coefficient (r), Point biserial correlation coefficients, and hierarchical multiple linear regression analysis were used to answer the research questions. Caregivers were more likely to experience a higher burden with older male care recipients with severe AD who had fewer years of formal education. Older female caregivers who were married, lived with the care recipient, daughter, had fewer years of formal education, were employed, had low monthly income, provided more hours of care per week, and were unsatisfied with the formal care for care recipients were more likely to experience a greater burden. All four sets of predictors related to contextual variables (care recipient socio-demographic factors, caregiver socio-demographic factors, caregiving-related factors), primary stressor (care recipient stage of Alzheimer’s), and caregiver well-being accounted significantly for variance in caregiver burden. In particular, care recipient factors, which included care recipient socio-demographic factors (age and educational level), and the primary stressor (care recipient stage of Alzheimer’s) were the largest in effect, accounting approximately for 53% of the variation in caregiver burden, followed by caregiver socio-demographic factors (age, educational level, marital status, employment status, monthly income level, and living with the care recipient), caregiving-related factors (hours of care per week and caregiver’s perception of formal care for care recipient), and caregiver well-being, each of which accounted for 21%, 3%, and 2%, respectively of the variation in caregiver burden. The significant individual variable that accounted for the most variance among care recipient factors was the care recipient's age. Among caregiver socio-demographic factors, spousal relationship (being married to the care recipient) represented a more critical individual determinant of caregiver burden than other factors. An increased total number of caregiving hours was identified as a more burdensome individual variable among caregiving-related factors than the caregiver's negative perception of formal care for the care recipient. Decreased caregiver well-being was a significant factor that accounted for increased caregiver burden. All contextual variables explored in this research, identified as predictors in the modified stress process model of Conde-Sala et al. (2010), accounted significantly for the variation in caregiver burden except the caregiver's age, educational level, and living with the care recipient. The primary stressor (care recipient stage of Alzheimer's) did not significantly account for the variance in caregiver burden in this research. These findings aligned with the prediction of Conde-Sala et al. (2010) that caregivers-associated variables have more decisive influence on caregiver burden than the primary stressors. The contribution of this study is a critical extension of existing worldwide knowledge. The finding of this research should be used as scientific evidence of the need to frame health-related policies to assist Saudi caregivers of persons with AD in obtaining more professional help and support to minimize the probability of experiencing an increased burden. Saudi policy makers, healthcare professionals, professional social workers, educators, and researchers should collaborate to improve the informal and formal care provided to the care recipient, which may enhance the quality of life of caregivers and the quality of care for the care recipient. The inclusion of AD in the Saudi Vision 2030, the establishment of Alzheimer's long-term care facilities and Alzheimer's elderly day centers, and international collaboration among governmental and non-governmental institutions are critical steps to address the gap in care and services for this particular population.

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