Division of Psychiatry and Applied Psychology, School of Medicine,University of Nottingham,Nottingham,UK.
School of Sociology and Social Policy,University of Nottingham,Nottingham,UK.
Int Psychogeriatr. 2019 May;31(5):627-642. doi: 10.1017/S1041610218001801. Epub 2018 Dec 6.
ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.
A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.
The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.
Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.
摘要目的：痴呆症通常会极大地限制患者的自主性，导致他们在日常生活决策中需要外部支持。这种支持通常由家庭成员提供，他们有时在法律上被授权代表他们所照顾的人做出决策。然而，当患者缺乏能力时，这些家庭照顾者几乎得不到关于如何提供最佳支持的信息。这可能会影响到痴呆症患者的自主性。本综述探讨了痴呆症患者的自主性体验。设计：在 IBSS、MedLine、PsychINFO、EMBASE 和 CINAHL 上进行了系统搜索。两名独立的研究人员筛选了研究并进行了质量评估。我们使用元民族学进行数据分析。作为综合的一部分，我们确定了决策过程中的行为机制，并研究了照顾者的支持如何在做出深思熟虑的选择中发挥作用。结果：元民族学涉及 20 项研究。确定了三个层次的三阶结构，每个结构描述了一个决策途径，并反映了痴呆症患者的自主性程度：自主决策、共同决策和伪决策。研究结果强调了那些促进或对痴呆症患者自主性产生负面影响的相互关系过程。结论：我们的综述将为卫生和社会保健人员提供对照顾者在决策过程中角色的理解，从而了解哪些机制需要通过培训来促进或抑制。
