Characterizing diagnostic disclosure communication strategies and challenges in dementia care: A qualitative study of interprofessional clinicians across three systems

Abstract

Background: Diagnostic disclosure communication in dementia care proves challenging for clinicians and inadequately addresses patient and caregiver needs. We characterized clinician communication strategies and challenges for diagnostic disclosure conversations as an initial step in developing a structured communication intervention. Methods: Thematic analysis of semi-structured interviews with 23 clinicians across three academic medical centers in neurology, geriatrics, geriatric psychiatry, neuropsychology, and primary care. Findings: Communicating a dementia diagnosis, because of its gravity, requires incremental communication strategies organized in the following domains. First, building and maintaining strong relationships with patients and caregivers by establishing rapport and emotional connection builds trust and creates a sense of partnership. Second, assessing illness awareness and establishing readiness to discuss diagnosis occurs over multiple visits. This involves creating psychological safety to discuss cognitive concerns, especially for individuals from racial and ethnic marginalized communities in which there is enhanced stigma. Third, clinicians tailor word choice for disclosure based on patient and caregiver needs and their own comfort. Fourth, clinicians are attuned to patient and caregiver emotions but feel varying levels of comfort responding to emotions. Fifth, approaches to sharing prognostic information include emphasis on individual variability and discussions of longer-term anticipated changes to function, although clinicians identified challenges with discussing prognosis due to uncertainty about rates of progression. Sixth, supporting hope and preparation in care planning supports patients and caregivers to adapt to the diagnosis and plan for future changes. Building relationships with caregivers and adapting communication for patients of different cultural backgrounds occurs throughout the process. Common challenges include: harm to the therapeutic relationship from ‘abrupt’ disclosures; limitations in patient ability to retain or accept diagnostic information; clinicians’ challenges with their own emotions that arise with disclosure. Conclusion: A customized, structured communication framework and training for clinicians may enhance the quality of diagnostic disclosure conversations in dementia care.