Research Group Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands.
Research Organisation Tao of Care, Amsterdam, The Netherlands.
PLoS One. 2018 Jun 13;13(6):e0198034. doi: 10.1371/journal.pone.0198034. eCollection 2018.
Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.
This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach.
The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others.
Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.
痴呆症护理往往仍然支离破碎，无法满足痴呆症患者及其家庭照顾者的需求。为了开发有效的医疗保健服务，深入了解家庭照顾者的经验是前提。
本荷兰研究是一项定性访谈研究。目的有两个：1）深入了解与痴呆症一起生活的意义；2）从家庭照顾者的角度了解与痴呆症一起生活的艺术。通过 47 名个人访谈和 6 次焦点小组访谈收集数据。分析遵循现象学启发的主题方法。
研究结果表明，与痴呆症一起生活可以理解为陷入不确定性和孤立之中。以下主题说明了疾病各阶段的这种体验：a）诊断前：一种越来越不安的感觉，感觉有些不对劲；b）诊断披露：不确定和令人不安的解脱；c）家中的痴呆症：陷入孤立和疲惫的生活；d）搬迁妥协：在解脱和悲伤之间纠结。此外，该研究表明，与痴呆症一起生活的艺术与以下几个方面相关：a）面对悲剧的能力；b）在疾病背景下发现意义和尊严；c）保持联系感和纽带；d）关注和他人认可的首要地位。
我们的研究结果表明，应对博斯（2011 年）所谓的“模糊损失经历”是与痴呆症一起生活的最具挑战性的方面之一。基于这些发现，我们开发了一个模型，描绘了人们如何处理意外情况，并沿着面对和抵抗的连续体寻求平衡。我们的研究表明，在与痴呆症一起生活的背景下，韧性不应仅仅被理解为个人的心理能力，也不应仅仅被理解为一系列行为，而是一种社会生态事业。
