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

Abstract

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.

Factors contributing to caregiver burden in dementia in a country without formal caregiver support

“…The lack of government-funded formal dementia services to manage BPSD may, therefore, contribute to the higher BPSD prevalence. The analysis revealed that caregivers with a financial burden experienced a significantly higher distress in relation to BPSD, which was consistent with prior studies stating that financial burden was a concern for caregivers and prevented caregivers from seeking help for BPSD (Alzheimer's Association, 2010; Wang et al, 2013).…”

“…There were two additional items stating "I don't do as good a job at work as I used to" and "I don't have a minute's break from my caregiving chores" that were correlated with physical burden. This result reflected the increased physical burden identified from other similar studies (Wang et al, 2013;Xiao et al, 2014). These two items were correlated with social and time-dependence burdens respectively from previous studies (Chou et al, 2002;Novak & Guest, 1989).…”

“…The salient finding from the analysis in this study was that all the items under "social burden" were about family issues. One possible explanation may be that the family was the main source for caregivers to seek support due to undeveloped formal social supports in dementia care and the compromises made with other family members to keep this source of support (Shaji et al, 2003;Wang et al, 2013).…”

“…Dementia caregivers in countries with undeveloped dementia services may experience different types and levels of subjective and objective caregiver burden. There is an increasing demand for dementia services and caregiver support via the public healthcare system in China due to a rapidly ageing population and the decline of available family caregivers (Wang, Xiao, He, & DeBellis, 2013). However, research evidence on caregiver burden and factors associated with the burden is considerably scarce.…”

“…This study is part of a larger project that compared caregivers of people with dementia and dementia services between China and Australia for the purpose of building cross-national collaboration to fight dementia, which is reported elsewhere (Wang et al, 2013;Xiao et al, 2014). The aim of this study is to explore the types of subjective burden and factors associated with these burdens in a country without formal caregiver support using a sample of subjects in a province in China as a case study.…”