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Values and Preferences of Individuals With Dementia: Perceptions of Family Caregivers Over Time

机译:痴呆症患者的价值观和偏好:随着时间的推移对家庭护理人员的看法

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摘要

>Purpose of the Study: Cross-sectional evidence indicates that family caregivers reporting on the importance of daily care values and preferences of individuals with mild-to-moderate dementia consistently report less importance than individuals with dementia (IWDs) self-report. Discrepancy is primarily associated with caregivers’ beliefs about care. However, research has yet to address how caregivers’ perceptions of IWDs’ values and preferences change over time and how change is related to caregivers’ well-being. >Design and Methods: The sample includes 198 dyads of an individual with mild-to-moderate dementia and a spouse or child providing assistance. Linear growth curve modeling was applied to investigate how caregivers’ perceptions of importance of IWDs’ values and preferences in daily care change over 4 years and the factors associated with change. >Results: Caregivers’ perceived importance of IWDs’ values and preferences significantly decreased over time, with significant between-person differences in level and slope. Between-person differences in level were associated with caregivers’ beliefs about care, IWDs’ self-reported importance of values and preferences at baseline, and kin relationship. Changes in caregivers’ reports of importance covaried with caregivers’ own quality of life over time. >Implications: Findings suggest that caregivers increasingly de-emphasize the importance of values held by their IWDs. Although creating this emotional distance may be adaptive, caregivers may become increasingly unable to make decisions that effectively represent IWDs’ own preferences.
机译:>研究目的:横断面证据表明,报告照顾者的日常护理价值和轻度至中度痴呆症患者的偏好的家庭照料者始终比痴呆症患者(IWD)的重要性低自我报告。差异主要与护理人员对护理的信念有关。但是,研究尚未解决护理人员对IWD价值观和偏好的看法如何随时间变化以及这种变化与护理人员的福祉如何相关。 >设计和方法:该样本包括198个双性恋者,患有轻度至中度痴呆症,并且有配偶或子女提供帮助。线性增长曲线模型用于调查看护者对IWD价值观和偏好在日常护理中的重要性的认知如何在4年内发生变化以及与变化相关的因素。 >结果:护理人员对IWD价值观和偏好的重要性随着时间的推移而显着下降,人与人之间的水平和坡度存在明显差异。人与人之间的水平差异与护理人员对护理的信念,内向性心脏病患者自我报告的基线价值观和偏好的重要性以及亲属关系有关。随着时间的推移,看护者重要性报告的变化与看护者自身生活质量的变化有关。 >含义:调查结果表明,护理人员越来越不重视IWD所拥有的价值观的重要性。尽管建立这种情感距离可能是自适应的,但护理人员可能越来越无法做出有效代表IWD自身偏好的决策。

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