Family carers’ expectations regarding dementia care services and support in China: A qualitative study

Abstract

Introduction In China, approximately 85% of people with dementia are cared for by family carers. However, limited research has been conducted to examine family carers’ expectations regarding what they perceive is required for optimal care. Therefore, this study aimed to explore family carers’ expectations regarding dementia care support and services in China. Methods A qualitative study employing semi-structured interviews, with data collected from three public tertiary hospitals where the primary family carers of people with dementia (N = 21) were recruited from May to December 2019. Purposive maximum variation sampling was used to recruit participants. Data was interpreted both inductively and deductively using thematic analysis. Findings Four themes were identified. The family carers reported minimal support regarding dementia care, and they held little hope of receiving support. However, most carers expressed their limited expectations, such as financial support from the government and respite care services from the community. Carers believed that care was their duty, and some of them were unwilling to move their relative with dementia into a nursing home. Conclusion Health and the three-tier long-term care systems in China are inadequately prepared for the challenges of dementia care, suggesting the need to develop health and social services and improve support for family carers to enable improved care for people with dementia.