Meaning-making and well-being of Chinese working dementia caregivers : implementation of experience sampling method

Abstract

Background: The well-being of Chinese working dementia caregivers demands urgent and critical attention due to their extraordinary suffering from burdens in their daily care, work, and personal life. As the backbone of informal care, adult child dementia caregivers bear significant burdens in all aspects of their daily lives. Besides various coping approaches, meaning-making as an existential approach can be extremely helpful in devastating experiences occurring to these caregivers. However, the existing literature investigating the meaning-making of stressful experiences in dementia caregivers has limited scope in the unidimensional aspect (i.e., caregiving experiences only), while the work and personal life experiences have been completely overlooked. A meaning-making choice model is proposed to reflect the actual daily living experiences of an adult-child working dementia caregiver and how meaning-making of multiple stressful experiences compensates for their compromised well-being. Objectives: This study aims to investigate the meaning-making choice of Chinese working dementia caregivers and how the choices affect their hedonic and social well-being. Furthermore, the study will address how the dyadic relationship between a caregiver and a care recipient, a critical cultural element in Chinese society, interacts with the meaning-making choice in affecting well-being. Methods: To address the research objectives, the 15-day-ESM structured questionnaire survey was conducted with a cohort of 100 working dementia caregivers recruited in Guangzhou, Guangdong, China, from October 2020 to August 2021. The ESM survey included phases of baseline (30 minutes), ESM (2 to 3 times per day), and follow-up (10 minutes). The average ESM well-being scores were calculated to accurately simulate working caregivers’ daily experiences over a period of time. The mediation models and moderated mediation models were adopted to investigate the impact of caregivers’ meaning-making choices and dyadic relationships on their well-being. Results: First, the findings identify the choice of making higher meanings in care, work and personal experiences is associated with the best hedonic and social well-being. Holding higher meaningful levels on more aspects (i.e., care and work aspects) leads to better well-being than that on fewer aspects (work aspect only, or none aspect). Second, the validated meaning-making choice model gives guidance on meaning-making practices and informs theoretical development on meaning-making in working dementia caregivers. Third, ESM data examines hedonic well-being more stably and accurately than that of the cross-sectional design. Last, the dyadic relationship is critical in the proposed meaning-making choice model. Discussion: The proposed meaning-making choice model incorporating the dyadic relationship implies that caregivers’ well-being can be sustained or improved with high meaning-making levels and/or better dyadic relationships. More specifically, better dyadic relationships can help maintain a higher well-being level for those who with a higher meaning-making level, and even more greatly benefit the well-being of those with a lower meaning-making level. The meaning-making choice model indicates that achieving the balance among meaningful care, work and life experiences yields better well-being outcomes. The mobile-based ESM design is advantageous in detecting hedonic well-being during daily living experiences with more robust measurement, better sensitivity, feasibility, usability, and ecological validity and reliability. (493 words) Keywords: Meaning-making, Well-being, Chinese Working Dementia Caregivers, Experience Sampling Method