The Informal Care Burden of Older Adults with Disability, Dementia, and Concurrent Cardiometabolic Multimorbidity: A Qualitative Study Based on Social Ecosystem Theory

Abstract

Background: The co-occurrence of disability, dementia, and cardiometabolic multimorbidity (CMM) creates a highly complex home-care context requiring informal caregivers to simultaneously provide daily living assistance, cognitive and behavioral support, and management of multiple chronic conditions, yet the multidimensional burden these caregivers bear remains poorly understood. Objective: To explore the caregiving burden and associated factors among primary informal caregivers of older adults with disability, dementia, and concurrent CMM, and to interpret them from a social–ecological systems perspective. Methods: A descriptive qualitative study was conducted. Purposive sampling recruited 26 primary informal caregivers from urban and surrounding rural areas of Shihezi, Xinjiang, for semi-structured interviews. All care recipients had impaired functional ability, clinically confirmed dementia, and at least two cardiometabolic diseases. Data were analyzed inductively with Colaizzi’s seven-step method, followed by interpretive mapping based on social–ecological systems theory. Results: At the micro level, burden mainly involved accumulated complex caregiving tasks, decision-making uncertainty, and physical and psychological exhaustion. At the mezzo level, caregiving responsibility was concentrated in individual family members, and community support was inadequately tailored to these families’ needs. At the macro level, caregivers’ use of external support was shaped by institutional accessibility, geographic distribution of care resources, and sociocultural expectations. Factors across levels interacted and jointly determined overall burden. Conclusions: The burden of informal caregivers of older adults with disability, dementia, and concurrent CMM is multidimensional and multilevel. Nursing and long-term care support should promote family sharing of caregiving responsibility, continuous professional support, and better family–external resource coordination to enhance the sustainability of home-based care.