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

Abstract

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 c hallenges 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.

Persons living with dementia and caregivers' communication preferences for receiving a dementia diagnosis

“…Furthermore, follow up visits can re-orient PLWD/caregivers to information, as it is likely they will not remember all information during disclosure [ 18 , 24 , 25 ]. However, systems-level barriers like clinical schedules/short visits and follow up appointment availability can make this challenging [ 47 ]. One way to supplement clinician education is to provide materials to increase knowledge about dementia [ 48 ], support decision-making, and improve satisfaction and medication compliance (e.g., question prompt lists, decision aids) [ 48 , 49 ].…”

Triadic Communication in Medical Encounters Including Individuals With Dementia

“…Studies indicated that clinicians should also tailor communication to patient preferences, such as spending alone-time with the patient before diagnostic communication and/or progressively disclosing a dementia diagnosis or information 18 . Some of these recommendations for optimal triadic communication overlap with recommendations for triadic communication in healthcare encounters generally, such as involving family members/caregivers in the conversation, building rapport, and meeting emotional and information needs 34,67 . However, other recommendations for communication in dementia settings are more tailored to individuals with cognitive impairment, such as using short sentences and visual aids 25 …”

“…• Communication about EOL care between professional caregivers and nursing home residents was uncommon; Communication about EOL care between professional caregivers and relatives was more frequent The diagnosis should be given in understandable language (Gruters, 2021) 22 Retain information and reduce uncertainty (Gruters, 2021) 22 Use a patient-centered approach to sensitively deliver the diagnosis (Phillips 2012) 27 Sensitively deliver the diagnosis (Phillips 2012) 27 Strategies to disclose the diagnosis may include avoiding elaboration, confirming comprehension, and using explicit terminology (Karnieli-Miller, 2007) 24 Lessen the impact of receiving bad news (Karnieli-Miller, 2007) 24 Check patient understanding and communicate empathically (Wollney 2020b) 35 Reflect patient preferences and education needs (Wollney 2020b) 35 Tailor communication to patient and caregiver preferences, backgrounds, and understanding of dementia (Wollney 2020a; Lecouturier, 2008) 25,34 Effectively deliver the diagnosis and educate patients and caregivers (Wollney 2020a; Lecouturier, 2008) 25,34 Caregivers sometimes thought that use of words like "dementia" or "Alzheimer" to disclose the diagnosis overshadowed subsequent information for patients (Byszewski, 2007) 18 Increase patient understanding of the diagnosis (Byszewski, 2007) 18 Involve a family member Patients agreed that a caregiver (family members or non-familial, e.g., neighbor or friend) should be present (Byszewski, 2007; Forbes, 2013) 18,39 Provide the patient with support (Byszewski, 2007; Forbes, 2013) 18,39 Family members present during the diagnosis may be able to adapt their behavior to the patient (Gruters, 2021) 22 Reflect understanding of patients' dementia-related behaviors (Gruters, 2021) 22 Align patient, family, and clinician perspectives about the presence of cognitive impairment (Aufill, 2019) 38 Move toward detection and diagnosis of cognitive impairment (Aufill, 2019) 38 Use a family-centered approach and acknowledge caregivers' roles and needs (Griffin, 2020) 43 Assess caregiver unmet needs, burden, and capacity to provide care (Griffin, 2020) 43 Provide opportunities for caregivers to have sep...…”

“…18 Some of these recommendations for optimal triadic communication overlap with recommendations for triadic communication in healthcare encounters generally, such as involving family members/caregivers in the conversation, building rapport, and meeting emotional and information needs. 34,67 However, other recommendations for communication in dementia settings are more tailored to individuals with cognitive impairment, such as using short sentences and visual aids. 25 In addition to informing clinical care, this review also has implications for future research on triadic communication in dementia settings.…”