Institute of Social Work, HU University of Applied Sciences, Utrecht, The Netherlands.
Research Center Social Innovation, HU University of Applied Sciences, Utrecht, The Netherlands.
Int J Geriatr Psychiatry. 2023 Aug;38(8):e5983. doi: 10.1002/gps.5983.
Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home.
Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co-researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings.
Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society.
For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person-centred support.
研究对痴呆症患者最重要的事情对于制定量身定制的干预措施和支持至关重要。本研究探讨了痴呆症患者如何体验日常生活，深入了解对他们来说在家里过上最好生活的重要因素。
受现象学方法的启发，对 15 名痴呆症患者进行了开放式访谈，并辅以家庭参观和步行访谈。每位参与者的资料收集包括一到三次访谈。数据分析采用描述性内容分析，并遵循开放、轴向和选择性编码阶段。在分析过程中，咨询了一个由七名痴呆症患者组成的共同研究小组，以帮助解释新出现的发现。
确定了日常生活中最重要的六个方面：1）参与有意义的活动，包括日常生活、家务、休闲、日常活动以及志愿服务或工作；2）保持联系感，包括家庭内部、与家人、朋友、团体和社区的关系；3）归属感，包括家庭内外的依恋以及对珍贵物品的依恋；4）与自我建立联系，包括反思过去经历、活在当下并展望未来的能力；5）适应持续变化，包括感官知觉、对物理环境的感知以及应对人际动态变化的能力；6）愿意接受专业人员、社区和社会的帮助和支持。
对痴呆症患者来说，日常生活是在最重要的事情和每天能够实现的事情之间进行持续平衡的行为。这不仅与痴呆症有关，而且还嵌入了更广泛的生活史、关系网络和物理环境视角。本研究强调了确定对痴呆症患者最重要的事情的重要性，以提供以患者为中心的支持。
