Fang Shuyan, Li Wei, Gao Shizheng, Song Dongpo, Zhi Shengze, Gu Yanyan, Sun Jiao
School of Nursing, Jilin University, No.965 Xinjiang Street, Changchun, Jilin, 130021, People's Republic of China.
Geriatric Cardiovascular Department, Hebei General Hospital, No.348 Heping West Road, Shijiazhuang City, Hebei Province, People's Republic of China.
BMC Nurs. 2024 Dec 18;23(1):909. doi: 10.1186/s12912-024-02588-3.
BACKGROUND: Multiple studies have shown that spouses of people with dementia (PwD) are two to six times more likely to develop dementia compared to the general population. Encouraging healthy behaviours and addressing modifiable risk factors could potentially prevent or delay up to 40% of dementia cases. However, little is known about how health behaviours change when a spouse assumes the role of primary caregiver. Therefore, the aim of this study was to explore the shared lived experience of spousal caregivers of PwD, focusing on identifying the trajectory and key events of that shape health behaviour changes after their partner's diagnosis. These findings seek to inform strategies for adopting and sustaining healthy behaviours among spousal caregivers. METHOD: A qualitative descriptive study was conducted. Using maximum variation and purposive sampling, 20 spouses of PwD who exhibited two or more risk factors were recruited for semistructured interviews. The interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: We found that in traditional Chinese culture health behaviour changes for spouses and people with dementia coping with the challenges of dementia occurred in two directions; (a) priming-leaping-coping: becoming a "smart" caregiver and (b) struggling-trudging-silence: the process by which the self is "swallowed." CONCLUSION: This study highlights how caregiving experiences influence spouses' health behaviors and dementia prevention, particularly in the Chinese context. The findings underscore the challenges of balancing caregiving with self-care. Culturally tailored, family-centered interventions are needed to support both caregivers and their long-term well-being.
背景:多项研究表明,与普通人群相比,痴呆症患者(PwD)的配偶患痴呆症的可能性要高出两到六倍。鼓励健康行为并解决可改变的风险因素可能会预防或延缓多达40%的痴呆症病例。然而,对于配偶承担主要照顾者角色时健康行为如何变化,人们知之甚少。因此,本研究的目的是探索痴呆症患者配偶照顾者的共同生活经历,重点是确定其伴侣诊断后塑造健康行为变化的轨迹和关键事件。这些发现旨在为配偶照顾者采取和维持健康行为的策略提供信息。 方法:进行了一项定性描述性研究。采用最大变异抽样和目的抽样法,招募了20名表现出两种或更多风险因素的痴呆症患者配偶进行半结构化访谈。访谈内容逐字转录,并采用主题分析法进行分析。 结果:我们发现,在中国传统文化中,配偶和痴呆症患者应对痴呆症挑战时的健康行为变化呈现两个方向:(a)准备-跨越-应对:成为“明智”的照顾者;(b)挣扎-跋涉-沉默:自我被“吞噬”的过程。 结论:本研究强调了照顾经历如何影响配偶的健康行为和痴呆症预防,尤其是在中国背景下。研究结果强调了在照顾他人与自我照顾之间取得平衡的挑战。需要开展针对文化特点的、以家庭为中心的干预措施来支持照顾者及其长期福祉。
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