Peel Elizabeth, Harding Rosie
University of Worcester, UK
University of Birmingham, UK.
Dementia (London). 2014 Sep;13(5):642-61. doi: 10.1177/1471301213480514. Epub 2013 Jul 3.
Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a 'maze'; (2) services as overly limited - 'beyond our remit'; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
痴呆症是一组具有挑战性的、渐进性的病症，给非正式的家庭护理人员带来了巨大的护理负担。需要一系列复杂的健康和社会护理服务来支持痴呆症患者。本文借鉴相互关联的“护理职责”和“痴呆症谈话”项目，重点关注英国护理人员对健康和社会护理服务的看法。我们使用主题话语分析方法，探讨了来自一份混合方法问卷（n = 185）、四个焦点小组以及对11名痴呆症患者非正式护理人员访谈的数据。讨论了三个主题：（1）服务如“迷宫”；（2）服务过于有限——“超出我们的职责范围”；（3）这些护理人员所采用的斗争话语。我们的分析突出表明，护理人员发现应对痴呆症护理中的系统性问题既耗时、不可预测，而且往往比他们所从事的护理工作更加困难。
