Quinn Catherine, Clare Linda, Pearce Alison, van Dijkhuizen Michael
Bangor University, School of Psychology, Gwynedd, UK.
Aging Ment Health. 2008 Nov;12(6):769-78. doi: 10.1080/13607860802380623.
Despite a wealth of research on factors affecting the well-being of caregivers for people with dementia, relatively little attention has been given to the issues facing caregivers in the early stages of dementia, and few attempts have been made to explore the subjective experience of caregivers using qualitative methods. This study explores the subjective, psychological experience of spouses or partners of people with early-stage dementia.
We conducted semi-structured interviews with 34 spouses or partners of people with a diagnosis of early-stage dementia, recruited through Memory Clinics, in order to elicit the participants' understanding of, and perspective on, their situation and experience. Transcripts of the interviews were subjected to interpretative phenomenological analysis.
Four main themes were identified, relating to difficulties in understanding the nature and meaning of the diagnosis and condition, changes in the relationship, problems and challenges, and ways of coping. Limited understanding of dementia appeared to add considerably to the difficulties faced by caregivers at a time when they were having to respond to major changes in their relationship and interactions, make significant adjustments in their lives and consider the future.
This study underlines the importance of helping family members to develop a working understanding of the condition in the early stages.
尽管针对影响痴呆症患者照料者幸福感的因素已有大量研究，但对于痴呆症早期阶段照料者所面临的问题关注相对较少，且很少有人尝试运用定性方法来探究照料者的主观体验。本研究探讨早期痴呆症患者配偶或伴侣的主观心理体验。
我们对通过记忆诊所招募的34名被诊断为早期痴呆症患者的配偶或伴侣进行了半结构化访谈，以了解参与者对自身状况和经历的理解及看法。访谈记录进行了解释性现象学分析。
确定了四个主要主题，分别涉及对诊断和病情的性质及意义理解困难、关系变化、问题与挑战以及应对方式。在照料者不得不应对关系和互动的重大变化、对生活做出重大调整并考虑未来之际，对痴呆症的有限理解似乎极大地增加了他们面临的困难。
本研究强调了在早期阶段帮助家庭成员对病情形成有效理解的重要性。
