Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study

The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included lack of social support, misunderstanding the diagnosis, and denial. Clinician barriers included difficulty giving bad news, difficulty communicating uncertainty, and lack of time. Triadic interaction barriers included challenges meeting multiple goals or needs and family requests for non-disclosure. Recommendations for best practice included for clinicians to foster relationships, educate patients and family, and take a family-centered approach. Clinicians described recommendations for fostering relationships such as using empathic communication and developing and maintaining connection. Educating patients and families included tailoring communication, explaining how the diagnosis was reached, and following up. Family approaches included meeting with family members prior to delivering the diagnosis and involving the caregiver in the discussion. Findings may inform updated recommendations for best practices when communicating a dementia diagnosis.