从家庭照顾者角度看痴呆症诊断的意义：一项定性研究。
The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study.
作者信息
Molvik Inger, Kjelvik Grete, Selbæk Geir, Rokstad Anne Marie Mork
机构信息
The Norwegian National Centre for Ageing and Health, Vestfold Hospital Trust, Postboks 2136, Tønsberg, 3103, Norway.
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
出版信息
BMC Health Serv Res. 2025 Apr 2;25(1):487. doi: 10.1186/s12913-025-12657-1.
BACKGROUND
With the anticipated increase in dementia prevalence over the coming decade, understanding the experience of receiving a dementia diagnosis for people living with cognitive impairment remains limited. This study aims to explore the implications of a family member with cognitive impairment receiving a dementia diagnosis or not from the perspective of their next of kin.
METHODS
A qualitative descriptive design was applied using individual interviews for data collection. Participants were recruited based on the cognitive function level of their family members, which was compatible with dementia as assessed with the Montreal Cognitive Assessment Scale (MoCA). The sample consisted of eight participants, comprising family members of five individuals with confirmed dementia diagnoses and three undiagnosed. The analysis was performed using four steps of systematic text condensation to discern codes, categories, and the overarching theme.
RESULTS
Three main categories were created: (1) Impact of observed cognitive decline, (2) Impact of diagnosis on service engagement, and (3) Support and follow-up for family caregivers. The findings show that next of kin who have received a dementia diagnosis for their family members are more proactive in seeking help and services, are better informed about available resources, and are more concerned about future challenges. On the other hand, next of kin to family members without a diagnosis are more inclined to handle the situation on their own, have less access to information and services, and generally express less concern about future problems.
CONCLUSION
The study reveals the benefits of receiving a timely dementia diagnosis in shaping more effective support systems and policies. This ensures that the next of kin and the person with cognitive impairment can navigate the complexities of dementia with greater confidence and preparedness, thereby enhancing their quality of life.
背景
随着未来十年痴呆症患病率预计会上升，对于认知障碍患者接受痴呆症诊断的体验的了解仍然有限。本研究旨在从其近亲的角度探讨认知障碍家庭成员接受或未接受痴呆症诊断的影响。
方法
采用定性描述性设计，通过个人访谈收集数据。根据家庭成员的认知功能水平招募参与者，其认知功能水平与使用蒙特利尔认知评估量表（MoCA）评估的痴呆症相符。样本包括八名参与者，其中有五名被确诊患有痴呆症的家庭成员和三名未被确诊的家庭成员的亲属。分析采用系统文本浓缩的四个步骤来识别代码、类别和总体主题。
结果
创建了三个主要类别：（1）观察到的认知衰退的影响，（2）诊断对服务参与的影响，以及（3）对家庭照顾者的支持和后续跟进。研究结果表明，为其家庭成员接受了痴呆症诊断的近亲在寻求帮助和服务方面更积极主动，对可用资源了解得更清楚，并且更关注未来的挑战。另一方面，未接受诊断的家庭成员的近亲更倾向于自行处理这种情况，获得信息和服务的机会较少，并且总体上对未来问题的担忧较少。
结论
该研究揭示了及时接受痴呆症诊断在形成更有效的支持系统和政策方面的益处。这确保了近亲以及认知障碍患者能够更自信和有准备地应对痴呆症的复杂性，从而提高他们的生活质量。
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