Woodstoke Natasha S, Winter Beth, Dodd Emily, Cheston Richard
School of Social Sciences, University of the West of England, Bristol, UK.
School of Health and Social Wellbeing, University of the West of England, Bristol, UK.
Dementia (London). 2025 Feb;24(2):269-289. doi: 10.1177/14713012241272805. Epub 2024 Sep 17.
Despite the psychological challenges that dementia creates, comparatively little attention has been paid to how individuals or families can be helped to adjust to dementia. One of the few interventions to do this is the Living well with Dementia (LivDem) post-diagnostic course. LivDem focuses on supporting individuals to talk more openly about their dementia. However, while family supporters attend preliminary and follow up sessions, their role is limited and finding a way for them to be more actively involved might enhance the impact of the intervention and make it more flexible. We therefore set out to explore how the current LivDem intervention could be adapted for couples and families. We completed eleven semi-structured interviews and focus groups with four groups of stakeholders: people living with dementia and their families: LivDem facilitators; researchers in this area; and psychotherapists with experience of working with couples or families living with dementia. Interviews were transcribed and analysed using reflexive thematic analysis. Four main themes were generated: "Hear the impact on everybody"; People who are "ready to do that"; "It's such a fine line"; and "You deal with it in your family". Participants emphasised that the intervention needs to be delivered by willing and skilled facilitators to people who are ready to talk in their family context; and this intervention needs to be embedded within connected services. Stakeholders felt that it would be possible to adapt the LivDem model for couples and families so long as a number of conditions were met. An adapted family or couple version of LivDem has the potential to facilitate improved adaptation to dementia and to be incorporated into dementia pathways and delivered with the NHS and the voluntary sector. Further research is needed to establish the feasibility of such an intervention.
尽管痴呆症带来了心理挑战，但相对而言，很少有人关注如何帮助个人或家庭适应痴呆症。“与痴呆症和谐共处”（LivDem）诊断后课程是少数为此目的而开展的干预措施之一。LivDem专注于支持个人更公开地谈论自己的痴呆症。然而，虽然家庭支持者会参加初始和后续课程，但他们的作用有限，找到让他们更积极参与的方法可能会增强干预效果，并使其更具灵活性。因此，我们着手探索如何调整当前的LivDem干预措施以适用于夫妻和家庭。我们与四组利益相关者进行了11次半结构化访谈和焦点小组讨论，这些利益相关者包括：痴呆症患者及其家人、LivDem辅导员、该领域的研究人员以及有与痴呆症患者夫妻或家庭合作经验的心理治疗师。访谈内容经转录后，采用反思性主题分析法进行分析。产生了四个主要主题：“了解对每个人的影响”；“准备好这样做的人”；“界限如此微妙”；以及“你在家庭中应对它”。参与者强调，干预需要由愿意且有技能的辅导员向准备好在家庭环境中交谈的人提供；并且这种干预需要融入相关服务中。利益相关者认为，只要满足一些条件，就有可能调整LivDem模式以适用于夫妻和家庭。经过调整的家庭或夫妻版LivDem有潜力促进对痴呆症更好的适应，并被纳入痴呆症治疗路径，由国民保健服务体系（NHS）和志愿部门提供。需要进一步研究以确定这种干预措施的可行性。
