A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning

Background Clinician communication at the time of a dementia diagnosis often inadequately addresses patient and caregiver needs. We aimed to characterize the communication experiences of patients and caregivers affected by dementia using an evidence-based serious illness communication framework. Methods We conducted semi-structured interviews of patients with dementia and caregivers. An interdisciplinary research team used thematic content analysis to identify themes. Results Participants included 6 patients and 15 caregivers recruited from the community and health care settings (n = 21; 17/21 female; n = 13 White (61%); n = 4 Black or African American (19%); n = 4 Latino/a (19%); n = 2 Asian; n = 2 other). Five themes were identified. First, perceptions of respectful or disrespectful communication affect the relationship with clinicians and contributes to positive or negative communication experiences. Second, participants described the emotional impact of sudden or unsupported disclosures, in which they felt unprepared to receive the news or emotionally abandoned after diagnosis. Third, the absence of, or ambiguity around, a definitive dementia diagnosis contributes to patient and caregiver distress and to feeling dismissed by clinicians. Fourth, mixed responses to illness education and clinician recommendations after disclosure reveals the need for more personalized and comprehensive care planning. Fifth, careful consideration around the timing of prognostic communication and advance care planning discussions is necessary to meet the needs of patients and caregivers with different emotional readiness, illness beliefs, and information preferences. Conclusion Dementia diagnostic disclosure would benefit from a structured yet tailored communication approach that prioritizes respectful communication, emotional support, and comprehensive care planning to meet the needs of patients and caregivers.