Stapley Sally, Pentecost Claire, Hillman Alex, Jones Ian Rees, Morris Robin, Quinn Catherine, Ravi Madhumathi, Thom Jeanette, Clare Linda
REACH: The Centre for Research in Ageing and Cognitive Health, University of Exeter Medical School, Exeter, UK.
Department of Criminology, Sociology, and Social Policy in the School of Social Sciences, Swansea University, Swansea, UK.
Ageing Soc. 2025 Apr 4:1-20. doi: 10.1017/S0144686X24000333.
'Living well' is an important concept across national dementia strategies, where qualitative research has contributed to understandings of living well for people with dementia. Longitudinal, qualitative approaches are fewer but can explore potential changes in accounts of living well, psychological coping and adaptation to dementia, and if or how people with dementia maintain continuity in their lives. The aim of this longitudinal qualitative study was to gauge what is important for 'living well' with mild-to-moderate dementia and whether this changes over time in a group of older people with mild-to-moderate dementia living at home. Semi-structured, qualitative interviews with 20 people with dementia from the IDEAL cohort study were conducted in 2017 and again one year later and analysed using longitudinal thematic analyses. The overarching narrative was largely that of continuity and adaptation, with incremental not disruptive change. Continuing participation and meaningful occupation were important to maintain living well over time, where individuals pursued new as well as previous interests. As a key psychological coping strategy to support continuity in their lives, individuals emphasised their capabilities to maintain activities in spite of dementia, compartmentalising specific areas which had become more challenging. Maintaining social networks and accommodating changes in social relationships were also central to living well over time including managing the psychological impacts of changes in spousal relationships. People in the earlier stages of dementia emphasise continuity and their capabilities, reporting change over time only in certain aspects of their lives. However, small, incremental changes in their social relationships and opportunities for meaningful occupation may still afford key areas for supporting capability to 'live well'.
“生活得好”是各国痴呆症战略中的一个重要概念，定性研究有助于人们理解痴呆症患者的生活状况。纵向定性研究方法较少，但可以探索生活状况描述、心理应对和对痴呆症适应方面的潜在变化，以及痴呆症患者是否以及如何在生活中保持连续性。这项纵向定性研究的目的是评估对于轻度至中度痴呆症患者来说，“生活得好”的重要因素是什么，以及在一组居家的轻度至中度痴呆症老年人中，这是否会随时间而变化。2017年，对来自IDEAL队列研究的20名痴呆症患者进行了半结构化定性访谈，一年后再次进行访谈，并采用纵向主题分析法进行分析。总体叙述主要是连续性和适应性，变化是渐进的而非颠覆性的。持续参与和有意义的活动对于长期保持良好生活很重要，患者会追求新的和以前的兴趣。作为支持生活连续性的关键心理应对策略，患者强调尽管患有痴呆症，他们仍有能力维持活动，将变得更具挑战性的特定领域区分开来。随着时间的推移，维持社交网络和适应社会关系的变化对于生活得好也至关重要，包括应对配偶关系变化带来的心理影响。处于痴呆症早期阶段的人强调连续性和自身能力，仅报告其生活某些方面随时间的变化。然而，他们社交关系和有意义活动机会的微小渐进变化，仍可能为支持“生活得好”的能力提供关键领域。
