“她突然告诉我她爱我”：护理人员和痴呆症患者之间的联系体验。
"Out of the clear blue sky she tells me she loves me": Connection experiences between caregivers and people with dementia.
机构信息
Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA.
Global Brain Health Institute, Department of Neurology, University of California, San Francisco, California, USA.
出版信息
J Am Geriatr Soc. 2023 Jul;71(7):2172-2183. doi: 10.1111/jgs.18297. Epub 2023 Mar 14.
BACKGROUND
Dementia can impede the relationship and connection between the person with dementia (PWD) and their caregiver. Yet, caregiving in dementia also offers opportunities for connection, which has implications for caregiver and PWD well-being. In this qualitative study, we describe and characterize ways caregivers felt connected to the person with dementia they care for.
METHODS
We conducted a telephone-based survey with caregivers of people with dementia. For this paper, we analyzed responses to an open-ended question focused on when caregivers feel most connected to the person they are caring for. Responses were analyzed and coded and themes were identified through an iterative process involving a multidisciplinary team of researchers and clinicians.
RESULTS
437 caregivers participated in this study. We identified two domains of connection: activity-based and emotion-based connections. Within activity-based connections, the following themes emerged: everyday activities; reminiscing; activities of caregiving; novel experiences; and time with family and friends. Within emotional connections, the following themes emerged: expressions of love, appreciation, and gratitude; physical affection; sharing an emotion or emotional experience; and times when the PWD seems like "themself" again.
CONCLUSIONS
Findings provide insights into ways caregivers experience a sense of connection with the person they care for. There is a call to shift away from focusing on reducing stress and toward optimizing positive experiences as a way to better support caregivers' health and well-being. Interventions that leverage these insights to foster caregiver - PWD connection could lead to better health and well-being for both members of the dyad. The amplification of a positive experience may be particularly important for caregivers who are struggling with limited support or respite. Clinicians may be interested in using a question about connection as a way to more fully understand a caregiver's current experience.
背景
痴呆症可能会阻碍痴呆症患者（PWD）及其照顾者之间的关系和联系。然而，痴呆症的护理也提供了建立联系的机会，这对照顾者和 PWD 的健康都有影响。在这项定性研究中，我们描述并描绘了照顾者与他们所照顾的痴呆症患者建立联系的方式。
方法
我们对痴呆症患者的照顾者进行了电话调查。在本文中，我们分析了针对一个开放式问题的回答，该问题侧重于照顾者何时与他们所照顾的人最有联系。通过一个涉及多学科研究人员和临床医生的团队的迭代过程，对回答进行了分析和编码，并确定了主题。
结果
共有 437 名照顾者参加了这项研究。我们确定了两个连接领域：基于活动的连接和基于情感的连接。在基于活动的连接中，出现了以下主题：日常活动；回忆；护理活动；新的体验；以及与家人和朋友在一起的时间。在情感连接中，出现了以下主题：表达爱、欣赏和感激；身体上的亲近；分享情感或情感体验；以及当 PWD 看起来像“他们自己”的时候。
结论
研究结果提供了有关照顾者与他们所照顾的人建立联系的方式的见解。人们呼吁从关注减轻压力转向优化积极体验，以此来更好地支持照顾者的健康和福祉。利用这些见解来促进照顾者与 PWD 的联系的干预措施，可能会导致这对二人组的双方都能获得更好的健康和福祉。放大积极体验可能对那些在有限的支持或喘息机会中苦苦挣扎的照顾者特别重要。临床医生可能有兴趣使用关于联系的问题，作为更全面地了解照顾者当前体验的一种方式。
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