Understanding patients’ and significant others’ preferences on starting a diagnostic trajectory for dementia: An integrative review

Abstract

Objective To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. Methods A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. Results From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. Conclusion A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis.

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

“…9,19 Most patients come to the clinic in hopes of finding clarity about the cause of their complaints and a clear plan forward, regardless of the syndrome diagnosis. 10,11 However, the diagnostic work-up does not always offer the certainty patients and their care partners were seeking, since uncertainty remains an inherent aspect of diagnostic testing and its outcome, especially in SCD and MCI. 17,26,27 Clinicians also indicate to struggle with communicating uncertainty and specific support on how to communicate about, and cope with, uncertainty might thus be warranted for clinicians as well as patients and their relatives.…”

“…These findings are in line with a recent literature review, indicating that receiving normal results from biomarker testing for AD can evoke frustration and disappointment in addition to feelings of relief or reassurance 9,19 . Most patients come to the clinic in hopes of finding clarity about the cause of their complaints and a clear plan forward, regardless of the syndrome diagnosis 10,11 . However, the diagnostic work‐up does not always offer the certainty patients and their care partners were seeking, since uncertainty remains an inherent aspect of diagnostic testing and its outcome, especially in SCD and MCI 17,26,27 .…”

“…9 How individuals are impacted and how they experience the diagnostic trajectory, including the communication about test results, might depend on their expectations and motivations for visiting the memory clinic. 9,10 Only a small proportion of individuals visiting a memory clinic want to confirm or exclude a dementia diagnosis. 11 Most individuals want to find out what is causing their symptoms or subjective complaints, irrespective of their syndrome diagnosis, and many of them have specific motivations for visiting the memory clinic.…”

Exploring diagnostic strategies for memory complaints in older adults: A retrospective general practice database study

“…The decision when to assess memory complaints and possibly diagnose dementia is considered a preference‐sensitive decision 6–8 . That is, some patients may prefer (early) diagnostic testing for an opportunity for (future) treatments, whereas others delay or defer diagnostic testing and do not actively seek help because they believe it will be beneficial for their quality of life 9,10 . By taking these preferences into account a timely diagnosis (i.e.…”

“…[6][7][8] That is, some patients may prefer (early) diagnostic testing for an opportunity for (future) treatments, whereas others delay or defer diagnostic testing and do not actively seek help because they believe it will be beneficial for their quality of life. 9,10 By taking these preferences into account a timely diagnosis (i.e. the moment in time the patient and significant other perceive they can benefit most from a diagnosis) can be achieved.…”