Miklitz Carolin, Fliessbach Klaus, McCormick Cornelia
Department for Old Age Psychiatry and Cognitive Disorders, University Hospital Bonn, Bonn, Germany.
German Center for Neurodegenerative Diseases (DZNE) Bonn, Bonn, Germany.
Front Neurol. 2024 Jul 23;15:1422354. doi: 10.3389/fneur.2024.1422354. eCollection 2024.
Research on non-cognitive features of dementia traditionally focusses on neuropsychiatric symptoms and challenging behavior and thus on negative aspects of the disease. Despite the clinical observation that many patients frequently report subjective well-being and often express positive emotions there is only little research on the definition, measurement and determinants of subjective well-being and happiness in people living with dementia. Furthermore, the few studies there are, examined happiness using retrospective questionnaires and the accounts of relatives or caregivers. However, in dementia, the experiencing self becomes more significant since past and future thinking are fading into the background. Here, we review the relative scarce literature in this field, discuss different psychological constructs and their applicability for dementia research, and suggest methods for measuring the addressed constructs in people with dementia. In particular, we propose methodology to study happiness and positive emotions in the experienced moment of the participants using ecological momentary assessments (EMA). We believe that adequate measures of momentary subjective well-being might become an important outcome parameter in clinical dementia trials beyond the currently used quality of life measures.
传统上,痴呆症非认知特征的研究主要集中在神经精神症状和挑战性行为上,因此关注的是该疾病的消极方面。尽管临床观察发现,许多患者经常报告主观幸福感,并常常表达积极情绪,但对于痴呆症患者主观幸福感和幸福的定义、测量及决定因素的研究却很少。此外,现有的少数研究使用回顾性问卷以及亲属或照料者的描述来考察幸福感。然而,在痴呆症中,由于对过去和未来的思考逐渐退居幕后,体验自我变得更加重要。在此,我们回顾了该领域相对稀缺的文献,讨论了不同的心理结构及其在痴呆症研究中的适用性,并提出了测量痴呆症患者相关结构的方法。特别是,我们提出使用生态瞬时评估(EMA)来研究参与者体验时刻的幸福感和积极情绪的方法。我们认为,除了目前使用的生活质量测量方法外,充分测量瞬时主观幸福感可能会成为临床痴呆症试验中的一个重要结果参数。