J Gerontol Nurs. 2023 Aug;49(8):27-34. doi: 10.3928/00989134-20230707-03. Epub 2023 Aug 1.
Informal caregivers of persons with early onset dementia (PWEOD) are usually the spouses of affected individuals. These caregivers face unique challenges related to the unexpected nature of disease onset at this early life stage along with the accompanying symptoms, which can be different from those in late onset dementia. The current study explores the meanings these caregivers make of their situations and actions in response to their experiences. Findings provide a basis for development of a conceptual framework illustrating the basic, psychosocial processes underlying their shared situation. Grounded theory methodology was used. Qualitative data were collected through semi-structured interviews with 15 participants. Data were analyzed using constant comparative techniques and situational analysis. A distinction was made across participants between identifying as spouse versus caregiver for their PWEOD. Each participant had made or was making an identity transition from viewing their role as becoming more caregiver-like toward an eventual, complete shift to that of caregiver in a stepwise fashion. Incremental shifts in identity reflected challenges to the notion held of what it means to be a spouse. Results support prior research highlighting the unique experiences of caregivers of PWEOD while providing a framework for understanding the unique situations of these care-givers. Findings also inform nursing interventions tailored for spouses of PWEOD. [(8), 27-34.].
早发性痴呆患者（PWEOD）的非正式照顾者通常是患者的配偶。这些照顾者面临着独特的挑战，因为疾病在这个早期生命阶段的突然发作，以及随之而来的症状，可能与晚发性痴呆不同。本研究探讨了这些照顾者对自己的情况和行动的意义，以应对他们的经历。研究结果为一个概念框架的发展提供了基础，该框架说明了他们共同情况的基本心理社会过程。采用扎根理论方法。通过对 15 名参与者的半结构化访谈收集定性数据。使用恒定性比较技术和情境分析进行数据分析。参与者在认同自己是 PWEOD 的配偶还是照顾者之间存在区别。每个参与者都经历了从将自己的角色视为更像照顾者到最终完全转变为照顾者的身份转变，这种转变是逐步进行的。身份的逐步转变反映了对作为配偶意味着什么的观念的挑战。研究结果支持了先前强调 PWEOD 照顾者独特经历的研究，同时为理解这些照顾者的独特情况提供了一个框架。研究结果还为针对 PWEOD 配偶的护理干预措施提供了信息。[（8），27-34]。
