School of Health Sciences, University of Akureyri, Akureyri, Iceland.
Dept of Business Administration, Western Norway University of Applied Sciences, Bergen, Norway.
Scand J Caring Sci. 2022 Sep;36(3):742-751. doi: 10.1111/scs.13035. Epub 2021 Sep 26.
Despite the negative implications for their own health, spouses continue to support each other and maintain their couplehood for as long as possible, including when one of them develops a severe illness. However, with some exceptions, the experiences of older male spousal caregivers have been largely overlooked, and our knowledge of the relational aspects of spousal dementia care is scarce. To respond to this knowledge gap, this article explores the following research questions: How do older male spousal caregivers of wives with dementia talk about changes in their couplehood? What transitions or phases in the relationship can be identified as the caring process evolves and the wife's health continues to deteriorate? To answer these questions, we analyse in-depth interviews with eight purposefully selected men aged 67-92 years old from Iceland and Norway. Our findings reveal that the participants felt that they were gradually losing their couplehood in the sense that they lost their shared everyday life routines, intimacy, joint activities, meaningful communication, and dreams and hopes for the future. Four phases of the dementia caring process were identified: the denial phase, the battle phase, the new reality phase and the redefinition phase. We hope that our findings spur more research on relational challenges as experienced by spouses caring for partners with cognitive decline. In conclusion, we argue that interdisciplinary clinical guidelines for a couple-centred approach in elder care should be developed to urge professional care providers to pay attention to the various changes and challenges that dementia couples undergo to meet not only the health and care needs of dementia patients but also those of their spouses.
尽管这对他们自己的健康有负面影响，但配偶仍会继续相互支持，并尽可能长时间地维持他们的夫妻关系，包括当其中一方患上重病时。然而，除了一些例外，人们对老年男性配偶照顾者的经历在很大程度上被忽视了，我们对配偶痴呆症护理关系方面的知识也很匮乏。为了应对这一知识差距，本文探讨了以下研究问题：患有痴呆症的妻子的老年男性配偶照顾者如何谈论他们夫妻关系的变化？随着照顾过程的发展和妻子健康状况的持续恶化，可以确定哪些关系转变或阶段？为了回答这些问题，我们对来自冰岛和挪威的 8 名年龄在 67-92 岁之间的精心挑选的男性进行了深入访谈。我们的研究结果表明，参与者们觉得他们逐渐失去了夫妻关系，因为他们失去了共同的日常生活习惯、亲密关系、共同活动、有意义的沟通以及对未来的梦想和希望。我们确定了痴呆症照顾过程的四个阶段：否认阶段、斗争阶段、新现实阶段和重新定义阶段。我们希望我们的研究结果能激发更多关于配偶在照顾认知能力下降的伴侣时所经历的关系挑战的研究。总之，我们认为应该制定以夫妻为中心的老年护理跨学科临床指南，以敦促专业护理人员关注痴呆症夫妻经历的各种变化和挑战，不仅满足痴呆症患者的健康和护理需求，还要满足他们配偶的需求。
