Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers
Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers
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DOI：
10.1017/s1041610213000306
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发表时间：
2013-06-01
影响因子：
7
通讯作者：
Manthorpe, Jill
中科院分区：
文献类型：
--
作者：
Samsi, Kritika;Manthorpe, Jill
背景：对决策进行选择和控制是生活质量的核心。2005年《精神行为能力法》(英格兰和威尔士)为保障痴呆症患者尽可能长时间自行作出决定的权利提供了一个法律框架。这对长期规划的影响已被调查；人们在自己家里的日常决策仍未被探索。方法：使用现象学方法，我们在一年内四次采访了12对夫妇(一名痴呆症患者+一名照顾者)，以确定决策经验，决策是如何谈判的，以及动态如何变化。定性访谈在每个人的家中进行，并对文本进行主题分析。结果：尊重自主性、决策的特殊性和最大利益是本样本大多数日常决策的基础。随着时间的推移，二元组从痴呆症患者和照顾者共同做出决定的支持性决策转变为替代决策，照顾者接管了大部分决策。这一连续体的要点表明，照顾者通过提供线索、减少选择、使用回溯信息和使用最佳利益原则，积极参与保持其亲属的参与。长期的配偶照顾者似乎最有能力为他们的配偶做出替代决定；成年子女和朋友照顾者在这方面很难做到这一点。结论：照顾者可能会逐渐为痴呆症患者做出决策。这可能会带来额外的压力，比如确定他们亲属的决策能力，权衡什么是他们的最佳利益。从业者和支持服务应及时为照顾者和痴呆症患者提供日常决策方面的建议，并注意能力可能发生的变化。
Background: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored.Methods: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts.Results: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers' active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Longterm spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this.Conclusions: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.