Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust , Tonsberg, Norway.
Norwegian Social Research (NOVA), Oslo Metropolitan University , Oslo, Norway.
Int J Qual Stud Health Well-being. 2020 Dec;15(1):1798711. doi: 10.1080/17482631.2020.1798711.
To examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time.
A longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry.
Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia-live in the moment, ignore the dementia, and make the best of it-seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual's awareness of dementia.
Unawareness of dementia may have an important adaptive function for preserving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivity.
探讨早发性痴呆（YOD）患者（<65 岁）对痴呆的认知程度，以及他们如何将认知作为一种策略，随着时间的推移保持生活质量。
对 YOD 患者进行了一项纵向定性研究，在 5 年内每 6 个月进行一次访谈，最多进行 10 次访谈。访谈采用经过修改的扎根理论分析，适应叙事研究。
认知是一个复杂的、多维度的概念。对痴呆的认知受个性、生活史和既定应对方式的影响。痴呆期间的主要应对方式——活在当下、忽视痴呆、充分利用——在疾病进展过程中似乎相当一致。生活状况的转变可能会改变个体对痴呆的认知。
对痴呆的不认知可能对保持生活质量具有重要的适应性功能。提高对痴呆的认知必须具有反思性和高度敏感性。
