Department of Primary and Community Care: Centre for Family Medicine,Geriatric Care and Public Health,Radboud University Medical Centre Nijmegen,the Netherlands.
School for Mental Health and Neuroscience,Alzheimer Centre Limburg,Maastricht University Medical Centre,Maastricht,the Netherlands.
Int Psychogeriatr. 2017 Nov;29(11):1889-1898. doi: 10.1017/S1041610217001314. Epub 2017 Jul 13.
BACKGROUND: To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness. METHODS: Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged. CONCLUSIONS: It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.
背景:探索赋予早发性痴呆(YOD)患者意义感的日常生活方面。
方法:本项定性研究纳入了 18 名 YOD 患者和 21 名非正式照护者。参与者均来自荷兰的 YOD 患者专业日间护理中心。我们对患者和非正式照护者分别开展了 4 组焦点小组,对小组讨论进行录音、转录,并采用归纳式内容分析法进行分析。
结果:分析产生了 4 个主题:(1)保持参与感,(2)日常生活中的损失,(3)应对和适应,以及(4)外部支持。在日常生活中尽可能参与能提供意义感的活动或休闲娱乐活动,这是保持参与感的关键主题。通过扮演社会角色或参与功能性活动,保留意义感被认为既重要又可行。随着时间的推移,活动提供意义感的重要性似乎会降低,而对愉快活动的需求似乎会增加。体验到的损失、应对、适应以及可用的外部支持是 YOD 患者尽可能参与日常生活的背景的重要组成部分。积极的应对方式和外部支持似乎在保持参与感方面发挥了促进作用。
结论:让 YOD 患者有机会感到自己有用非常重要;特别是在疾病的早期阶段。应当对照护者进行教育,以增强 YOD 患者对日常生活的意义感和参与感。
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