Multidimensional burden of caregivers of Alzheimer's disease and related dementia in China: A nationwide cross-sectional study

Background As China's population ages, the burden on caregivers of individuals with Alzheimer's disease and related dementias (ADRD) is increasing. Comprehensive nationwide studies on caregiver burden, particularly emotional experiences, however, remain limited. Objective To investigate the multidimensional aspects of caregiving burden associated with ADRD patients through a nationwide survey. Methods This cross-sectional study included 1221 ADRD patient-caregiver pairs from 29 province-level administrative divisions in mainland China, recruited through dementia-dedicated online forums. The multidimensional aspect of caregiver burden, including physical, mental, familial, emotional, and quality-of-life impact, as well as attitudes toward caregiving and needed supports, was measured using a self-reported assessment. Results Patients had a median age of 66 years, with 33% classified as young-onset dementia (YOD). Caregivers were predominantly younger (median age: 30), employed (96.6%), and male (59.8%). Most reported moderate-to-severe physical (24.2%), mental (31.0%), family life (29.2%), and quality-of-life (47.2%) burden, with high emotional strain (ambivalence: 66.7%; grief: 59.8%; guilt: 57.7%). Independent predictors of burden included patient mood, caregiver emotional states, and caregiving extent, while financial stability and positive caregiving attitudes were identified as protective factors. Caregivers prioritized financial aid (25.1%), additional helpers (19.7%), and psychological support (16.7%). Conclusions This nationwide study highlights the multidimensional burden faced by ADRD caregivers in China. Predominantly younger, employed, and male caregivers reflect shifting sociocultural dynamics. The high prevalence of YOD adds complexity to caregiving demands. Our findings underscore the need for evidence-based individualized support mechanisms, such as psychosocial and workplace interventions, to alleviate caregiver burden in China.