Salford Institute for Dementia, University of Salford, Salford, UK.
BMJ Open. 2018 Oct 21;8(10):e021166. doi: 10.1136/bmjopen-2017-021166.
Despite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.
Participants' homes, support group premises or university rooms.
14 people with a diagnosis of YOD from a northern UK city.
Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.
Four superordinate themes are reported on 'process of diagnosis', 'the impact of living YOD', 'needs of people with YOD' and 'living well with YOD'. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.
People who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.
尽管在英国估计有 4 万人被诊断为早发性痴呆（YOD），但与晚发性痴呆相比，人们对该病的认识普遍不足。本研究旨在探讨与 YOD（65 岁以下）患者共同生活的人的经历和需求，并了解影响他们的问题。
参与者的家、支持小组场所或大学房间。
来自英国北部城市的 14 名 YOD 诊断患者。
采用半结构化深入访谈，根据解释现象学分析的原则进行横向分析。
报告了四个超主题，分别为“诊断过程”、“YOD 生活的影响”、“YOD 患者的需求”和“YOD 良好生活”。九个子主题描述了参与者在被诊断为 YOD 后出现认知困难的经历，并随后生活在这种状况下。出现的关键问题包括：对 YOD 的普遍认识不足；这如何导致寻求帮助的延误；在预诊断轨迹中存在共性；对预诊断症状模式的回顾性理解；获得明确诊断的困难；面对面支持的重要性；以及与日常生活相关的困难。参与者还描述了该疾病对他们的情绪和心理的影响，以及正式和非正式支持网络的重要性。
被诊断为 YOD 的人认为自己与老年痴呆症患者不同。尽管有相似的症状，但他们所处的环境会产生一系列独特的心理社会问题，这些问题通常不能得到卫生和社会保健服务的很好解决。随着对 YOD 的认识不断提高，应该解决为 YOD 患者提供服务的发展（或适应）问题，以满足他们的特殊需求。
