The expectations and experiences of patients regarding the diagnostic workup at a specialized memory clinic: An interview study

Abstract

Background: 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.

Methods: 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).

Results: 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.

Conclusion: 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.

Patient or public contribution: 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.

Keywords: Alzheimer's disease; dementia; diagnostic work‐up; memory clinic; physician–patient communication; subjective cognitive decline.