Maud Hevink

2 | 33 versa. For example, PwMCs with a family history of dementia are more inclined to believe diagnostic testing is necessary when minor memory complaints are present (41). This could be explained by expected outcomes in the form of support after diagnosis based on previous experiences with family members. However, ‘the feeling of needing to do something’ can be seen as ‘the gut feeling’ often described as ‘doing something is better than doing nothing’ or the ‘more-is-better heuristic’ (47). These ‘gut feelings’ do not always lead to patient preferences that are concordant with their values, because emotions can alter perceptions of quantity and value (48). The ‘feeling of needing to do something’ might therefore be less susceptible to the identified factors because it’s a more emotion-based view. This review highlights the challenge of finding the right timing for starting a diagnostic trajectory for both the PwMC and their SO, as their preferences can be different as was suggested by others (49, 50). Some PwMCs believed nothing could be done about the symptoms, help was not needed (45, 46), or a diagnosis was not perceived as beneficial for future planning (39, 42), whereas SOs specifically perceived diagnostic testing as beneficial because of possibilities to start treatment or gain access to support (39, 41-43, 46). The expectations on the benefits of a diagnostic trajectory identified in our review are similar to a review that identified perceived benefits of screening such as access to treatment, financial benefits, and the ability to plan ahead in patients, clinicians, and the general public (24). They highlight the importance of family on the decision to undergo screening, which is similar to the role of the family in deciding on starting a diagnostic trajectory for dementia identified in our review. Our results show that PwMCs and SOs preferences are shaped by interactions with HCP, societal factors, and support or opinions of the social network, this is in line with the ecological perspective on patient preferences by Street et al. (51). Their ecological model suggests that patient preferences are shaped by the social, cultural, economic, and media context. The context of the health care system might influence patients’ preferences on top of the identified societal factors in our review. Access to health and support services has been experienced as complex by persons with dementia and their caregivers (5, 52), which may negatively affect expected outcomes of a diagnostic trajectory. The ecological perspective also describes that patient preferences can in turn be affected by clinical encounters, when patients’ initial preferences based

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