Patients' and care partners' views on communicating the cause of dementia and related uncertainties: A qualitative study

Background Dementia is a syndrome with various presumed causes, such as Alzheimer's disease. Communicating the cause of dementia is challenging for clinicians, involving complex information and frequent uncertainties. Objective We explored perspectives of patients with mild cognitive impairment or dementia (Alzheimer's disease, Lewy body dementia, frontotemporal dementia, vascular dementia, or mixed pathology) and their care partners, on what communication they prefer about the cause of dementia and related uncertainty. Methods We held focus groups and interviews in the Netherlands, with 22 patients who had received a diagnosis at the memory clinic in the past four months, and their 21 care partners. Data were analyzed using content analysis. Results Participants showed poor knowledge of the presumed cause, often mentioning risk factors (e.g., age, "bad luck", genetics, lifestyle). During the diagnostic disclosure, clinicians' communication efforts (e.g., visualization of test results) enhanced participants' understanding. Participants' needs regarding etiological information varied: some desired detailed information to obtain clarity and receive appropriate care, while others preferred minimal information because of perceived limited added value and potential information overload. We observed no clear demographic or clinical patterns in these preferences. Participants emphasized the importance of clinicians being explicit about the presence of uncertainty, with care partners particularly indicating strong information needs. Conclusions Findings reveal much variation in the extent to which patients and care partners wish to receive information about the cause of dementia and related uncertainty, highlighting the need for a personalized approach.