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

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dc.contributor.author Wang (RN), Jing
dc.contributor.author Xiao, Lily Dongxia
dc.contributor.author He, Guo-Ping
dc.contributor.author De Bellis, Anita Marie
dc.date.accessioned 2014-11-02T23:35:20Z
dc.date.available 2014-11-02T23:35:20Z
dc.date.issued 2014-06
dc.description 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. en
dc.description.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. en
dc.identifier.citation 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. en
dc.identifier.doi http://dx.doi.org/10.1111/jan.12299 en
dc.identifier.issn 0309-2402
dc.identifier.uri http://hdl.handle.net/2328/35045
dc.language.iso en
dc.publisher Wiley en
dc.rights Copyright © 2013 John Wiley & Sons Ltd en
dc.rights.holder John Wiley & Sons Ltd en
dc.subject behaviour management; care burden; caregiver; community nursing care; critical hermeneutics; dementia en
dc.title Family caregiver challenges in dementia care in a country with undeveloped dementia services en
dc.type Article en
local.contributor.authorOrcidLookup De Bellis, Anita Marie: https://orcid.org/0000-0001-7689-9890 en_US
local.contributor.authorOrcidLookup Xiao, Lily Dongxia: https://orcid.org/0000-0002-4631-2443 en_US
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