Department of Clinical Sciences, Malmö, Clinical Memory Research Unit, Lund University, Malmö, Sweden.
Department of Infectious Diseases, Skåne University Hospital, Malmö, Sweden.
BMJ Open. 2019 Jan 29;9(1):e024983. doi: 10.1136/bmjopen-2018-024983.
To explore the subjective experience of living with dementia with Lewy bodies (DLB).
A qualitative study of in-depth interviews using interpretative phenomenological analysis.
A memory clinic in Malmö, southern Sweden.
A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5-7 years.
Three themes were identified in relation to the participants' experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends.
This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services.
探索路易体痴呆（DLB）患者的主观生活体验。
采用解释现象学分析的深度访谈定性研究。
瑞典南部马尔默的一个记忆诊所。
5 名年龄在 78 至 88 岁之间、患有 DLB 且病程为 1.5-7 年的男性参与者。
参与者对 DLB 的体验主要有三个主题：（1）疾病影响，包括症状体验和受限的参与和活动；（2）自我认知和应对策略；（3）他人的重要性，如医疗保健、家庭和朋友。
本研究深入了解了 DLB 的第一手生活体验，并与其他痴呆类型进行了比较。研究结果强调了疾病体验和幸福感的特征，以及 DLB 患者如何应对疾病带来的挑战。这些发现对于研究和临床实践都很重要，表明直接让 DLB 患者参与确定护理的重要方面是可行的，包括改善医疗服务。
