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首页> 外文期刊>International psychogeriatrics >Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers
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Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers

机译：痴呆症的日常决策：对痴呆症患者和家庭照顾者的纵向访谈研究的结果

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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. Long-term 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.
机译：背景：对选择权进行选择和控制对于生活质量至关重要。 《 2005年心理能力法案》（英格兰和威尔士）提供了一个法律框架，以保护痴呆症患者尽可能长地做出自己的决定的权利。已经研究了这对长期计划的影响;人们在家中的日常决策仍未开发。方法：我们采用现象学的方法，在一年中四次采访了十二个双性恋者（一个痴呆症患者+一个护理人员），以确定决策的经验，如何协商决策以及动态变化。定性访谈在人们自己的家中进行，主题分析应用于笔录。结果：在此样本中，尊重自主性，决策专用性和最大利益是大多数日常决策的基础。随着时间的流逝，二元组从支持的决策（由痴呆症患者和护理人员共同做出决策）过渡到替代的决策，由护理人员接手许多决策。这个连续体上的点表示护理人员通过提供提示，减少选择，使用追溯信息和使用最大利益原则来积极参与保持亲戚的参与。长期的配偶照顾者似乎最有能力为配偶做出替代决定。成年子女和照顾朋友的人为此感到挣扎。结论：护理人员可能会逐步为痴呆症患者做出决策。这可能带来更多压力，例如确定他们的亲戚的决策能力并权衡他们的最大利益。从业人员和支持服务人员应围绕日常决策向护理人员和痴呆症患者提供及时的建议，并留意能力如何变化。

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