Department of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark.
Health Sciences Research Center, UCL University College, Odense, Denmark.
Int J Qual Stud Health Well-being. 2020 Dec;15(1):1734277. doi: 10.1080/17482631.2020.1734277.
: To explore and describe the experience of people having young-onset dementia.: This was a qualitative study that used semi-structured interviews to collect data from nine persons with young-onset dementia (aged 47-65; five men and four women). Data were collected in the spring of 2018. All interviews were conducted at the participants' choice and in their own homes by one interviewer. The collected data were analysed using the six-stage process of reflexive thematic analysis model.: The analysis revealed three themes: Dementia causing loss of control over oneself; becoming a burden to the family while sense of self disappears; and fearing a humiliating future.: The experience of having and living with young onset dementia affected the persons' thoughts and memory and was experienced through the persons' loss of personality and sense of self. Thoughts about the future were associated with fear, and the risk of changing their personalities to something different from the one which they had experienced as humiliating throughout most of their lives.
: 探索和描述患有早发性痴呆症的人的体验。: 这是一项定性研究，使用半结构化访谈从九名患有早发性痴呆症的人（年龄在 47-65 岁之间；五男四女）那里收集数据。数据于 2018 年春季收集。所有访谈均由一名访谈者在参与者选择的地点和他们自己的家中进行。使用反思性主题分析模型的六阶段过程对收集的数据进行分析。: 分析揭示了三个主题：痴呆症导致对自己失去控制；自我意识消失的同时成为家庭的负担；担心未来的羞辱。: 患有和与早发性痴呆症一起生活的经历影响了患者的思维和记忆，并通过患者的个性和自我意识的丧失来体验。对未来的思考与恐惧有关，担心他们的个性会发生变化，变得与他们一生中大部分时间所经历的羞辱不同。
