Division of Clinical Geriatrics, Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Karolinska Institutet, Stockholm, Sweden.
Theme Inflammation and Aging, Medical Unit Aging, Karolinska University Hospital, Stockholm, Sweden.
Health Expect. 2024 Apr;27(2):e14021. doi: 10.1111/hex.14021.
Because of the shift towards earlier diagnosis of dementia and/or Alzheimer's disease (AD), increasing numbers of individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI) are seen in memory clinics. Yet, evidence indicates that there is room for improvement when it comes to tailoring of the diagnostic work-up to the needs of individual patients. To optimize the quality of care, we explored patients' perspectives regarding the diagnostic work-up at a specialized memory clinic.
This interview study was conducted at Karolinska University Hospital (Sweden). The comprehensive diagnostic work-up for dementia at the memory clinic in Solna is conducted within 1 week. A sample of 15 patients (8 female; mean age = 61 years [range 50-72]; 11 SCD, 1 MCI and 3 AD dementia) was purposively selected for a series of three semistructured interviews, focussing on (1) needs and expectations (during the week of diagnostic testing), (2) experiences (within 2 weeks after test-result disclosure) and (3) reflections and evaluation (3 months after disclosure). Transcribed audio-recorded data were analyzed using thematic content analysis (using MaxQDA software).
Three key themes were identified: (1) the expectations and motivations of individuals for visiting the memory clinic strongly impacted their experience; (2) the diagnostic work-up impacted individuals psychosocially and (3) the diagnostic work-up provided an opportunity to motivate individuals to adopt a healthier lifestyle.
Our findings underscore the importance of enquiring about the expectations and needs of individuals referred to a specialized memory clinic, allowing for expectation management and personalization of provided information/advice, and potentially informing the selection of patients in need of a comprehensive diagnostic work-up. Structural guidance might be needed to support those with SCD and MCI to help them cope with uncertainty, potentially resolve their issues, and/or stimulate brain health.
We gathered the perspectives of 15 individuals who had been referred to the memory clinic at three different time points through semistructured interviews, and these interviews were the primary data source.
由于痴呆症和/或阿尔茨海默病（AD）的早期诊断趋势，越来越多的有主观认知下降（SCD）和轻度认知障碍（MCI）的个体在记忆诊所中被发现。然而，有证据表明，在根据个体患者的需求调整诊断工作方面还有改进的空间。为了优化护理质量，我们探索了患者在专门的记忆诊所对诊断工作的看法。
这项访谈研究在卡罗林斯卡大学医院（瑞典）进行。在索纳的记忆诊所，全面的痴呆症诊断工作在 1 周内完成。从 11 例 SCD、1 例 MCI 和 3 例 AD 痴呆症患者中，选择了 15 例患者（8 名女性；平均年龄 61 岁[范围 50-72]）进行了一系列三次半结构化访谈，重点关注（1）需求和期望（在诊断测试的一周内），（2）体验（在测试结果披露后的两周内）和（3）反思和评估（披露后 3 个月）。使用 MaxQDA 软件对转录的音频记录数据进行了主题内容分析。
确定了三个关键主题：（1）个体访问记忆诊所的期望和动机强烈影响了他们的体验；（2）诊断工作对个人的心理社会产生了影响；（3）诊断工作提供了一个激励个体采取更健康生活方式的机会。
我们的研究结果强调了询问被转介到专门的记忆诊所的个体的期望和需求的重要性，以便进行期望管理和个性化提供的信息/建议，并可能为需要全面诊断工作的患者的选择提供信息。可能需要结构性指导来支持 SCD 和 MCI 患者，帮助他们应对不确定性，潜在地解决他们的问题，并/或刺激大脑健康。
我们通过半结构化访谈在三个不同时间点收集了 15 名被转介到记忆诊所的个体的观点，这些访谈是主要的数据来源。
