Family caregiver challenges in dementia care in a country with undeveloped dementia services

Author version made available in accordance with Publisher's copyright policy. This is the accepted version of the following article: Wang J., Xiao L.D., He G.-P. & De Bellis A. (2014) Family caregiver challenges in dementia care in a country with undeveloped dementia services. Journal of Advanced Nursing 70(6), 1369–1380. , which has been published in final form at [doi: 10.1111/jan.12299]. In addition, authors may also transmit, print and share copies with colleagues, provided that there is no systematic distribution of the submitted version, e.g. posting on a listserve, network or automated delivery.Aims To examine socially, culturally and politically constructed factors affecting family caregiver practice in dementia care, and to identify possible changes in a country with undeveloped dementia services. Background In China and many other low- and middle-income countries, social transformations are weakening the family care model, which has an impact on the population with dementia. Exploring the challenges that caregivers face may help the international healthcare community to improve dementia services. Design A double hermeneutic approach informed by Giddens' Structuration Theory was used. Methods In-depth semi-structured interviews with 23 family caregivers of people with dementia were conducted in 2012. The interviews were audiotaped, transcribed and analysed. Findings Analyses revealed three consequences of socially constructed factors in dementia care, which constrained caregiver practice. First, caregivers were unable to manage behavioural and psychological symptoms of dementia. Untreated aggressive behaviours caused harm to the person with dementia and endangered the caregiver and the public. Second, the burden on the primary caregiver was evident and caregivers received limited support. Third, there was little coordination between primary and specialist care services for people with dementia. On critical reflection of potential changes that could improve dementia services, caregivers suggested that community nurses have a leading role in coordinating dementia services and supporting caregivers. Conclusion Relying on family caregivers to care for people with dementia without the prevision of dementia services by the public healthcare system generates negative health outcomes for both care recipients and caregivers. The nursing workforce should be developed to support dementia services