Expectations, experiences, and tensions in the memory clinic: the process of diagnosis disclosure of dementia within a triad

Abstract

ABSTRACTBackground: Health communication studies emphasize the importance of addressing the needs and expectations of patients and families with the disclosure of grave medical conditions. However, little attention has focused on their expectations and experiences of the clinical encounters in diagnosis disclosure of dementia.Methods: In-depth post-encounter interviews with ten patients and 17 companions from two memory clinics in Israel were analyzed using grounded theory. The analysis focused on identifying their expectations, their experiences, and their perceptions of the process and outcomes.Results: Major differences exist between patients’ and companions’ expectations. Patients’ expectations were an expression of the lack of knowledge/understanding of the visit's purpose and of insight into the memory deterioration. Companions had more clear-cut expectations: some desired confirmation of the legitimacy and pertinence of their concerns about their relatives’ memory problem, whereas others hoped to allay their concerns. Patients’ dissatisfaction stemmed mostly from their perceptions of the process, communication, and outcome. Companions’ dissatisfaction stemmed from lack of information or of tailored follow-up processes for implementing recommendations provided by the clinic.Conclusions: Our findings expose two main issues challenging fulfillment of the different and frequently opposing expectations of patients and companions. The first is a consequence of the multi-participant nature of the encounter and the second relates to the character and severity of the disease itself. The discordance between the expectations of the two participants generates conflicts that interfere with meeting their diverse needs within the encounters – with consequent disappointment. The implications of these issues merit consideration in the planning of dementia management.