A mixed-methods study on spousal caregivers’ burden in young-onset dementia in China: a joint display of qualitative and quantitative data

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BACKGROUND AND OBJECTIVES: Becoming spousal caregivers for persons with young-onset dementia (YOD) is an unexpected event that deviates from the normal life course trajectory, creating unique and profound challenges. Understanding their burden, its primary sources, and their coping resources is essential for developing tailored support. RESEARCH DESIGN AND METHODS: We employed a mixed-methods approach to comprehensively understand the caregiving burden experienced by 11 community-dwelling spousal caregivers of YOD. We used the Zarit Burden Interview to quantify caregiving burden and conducted semi-structured qualitative interviews to explore the caregiving experience in depth. A joint display method was used to integrate and present the converging findings from quantitative and qualitative data, offering a holistic perspective on the caregiving burden. RESULTS: All participants experienced varying degrees of burden, with the average burden level being moderate. Four themes emerged regarding their caregiving burden experiences: diverse sources of caregiving burden, unexpected changes in personal and interpersonal interactions, complex emotional experiences, and inadequate social support and resources. Quantitative and qualitative results converged and supported each other. The burden was mainly driven by care recipients' excessive dependence and dynamic care needs. Spousal caregivers faced significant challenges in maintaining their personal identity and social life. Caregiving reshaped family dynamics. The inadequate support resources and overwhelming responsibilities imposed substantial psychological stress on them. DISCUSSION AND IMPLICATIONS: There is an urgent need to develop family-centered community support services and respite care to provide younger spousal caregivers with the time and space to manage their personal lives and alleviate their burden.

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