Patient and companion shared decision making and satisfaction with decisions about starting cholinesterase medication at dementia diagnosis

Background: there is little research on how people with dementia are involved in treatment decisions at diagnosis. Objective: to measure shared decision making when starting cholinesterase inhibitors, investigate associations with contextual factors and explore satisfaction and experience of the diagnostic meeting. Setting: nine UK memory clinics in two geographical locations. Subjects: 74 people receiving dementia diagnoses (with 69 companions) and 21 doctors. Methods: we video-recorded 74 memory clinic consultations and rated doctor-shared decision making behaviours using the Observing Patient Involvement in Decision Making scale (OPTION-5 scale). Patients and companions rated their satisfaction and experience. Mixed-effects regressions investigated involvement and (i) number people present, meeting length, capacity, cognitive functioning, diagnosis; and (ii) patient/companion satisfaction and consultation experience. Results: mean consultation time was 26.7 min. Mean OPTION-5 score was 22.5/100 (Standard Deviation = 17.3). Doctors involved patients in decisions more often when patients had mixed dementia (beta = 10.13, 95% confidence interval 1.25-19.0, P = 0.025) and in shorter meetings (beta = -0.51, 95% CI -0.87 to -0.15, P = 0.006). Patient and companion satisfaction were high and not associated with whether doctors invited patient involvement. Half of patients and one-third companions were uncertain about the meeting outcome, experienced communication barriers and negative emotions. Conclusions: consultations scored low on shared decision making, but were comparable to other settings and were not lower with more cognitively impaired patients. Negative patient and companion experiences reflect the importance of supporting healthcare providers to address patient and companion emotions and need for information.