Clinician approaches to communicating a dementia diagnosis: An interview study

Abstract

Background Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter. Method Investigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data. Results Fifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as “memory disorder.” Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education. Conclusions Diverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

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

“…Although participants agreed it is important for clinicians to communicate the diagnosis clearly, PLWD/caregivers views differed on the amount or type of detail needed for clarity, including whether a specific etiology (i.e., “Alzheimer's disease”) is needed for the diagnosis to be considered clear or helpful [ 6 , 18 ]. Some PLWD and caregivers may view the term “Alzheimer's disease” as stigmatizing as opposed to helpful [ 18 , [26] , [27] , [28] , [29] , [30] ], though clinician guidelines recommend giving a specific etiology during diagnosis [ 3 ]. This underscores the need to incorporate PLWD views when developing guidelines.…”

“…Existing clinician guidelines for disclosing a dementia include incorporating family members and using effective communication [ 3 , 24 ], but it is unclear whether or how these guidelines are implemented or reflect current PLWD and caregiver preferences [ 11 , 25 ]. For instance, some clinical recommendations conflict with nuanced PLWD and caregiver views, such as terminology to use when disclosing a diagnosis (i.e., more general term such as “dementia” or referencing suspected pathologies like Alzheimer's disease) [ 3 , 6 , 18 , [26] , [27] , [28] , [29] , [30] ]. Person-centered communication that accounts for PLWD and caregiver perspectives is needed [ 12 , 24 ], yet research on clinical dementia communication often focuses on clinician perspectives [ 21 , [31] , [32] , [33] , [34] ], or uses audio/video recordings of clinical visits to describe what happens as opposed to investigating what PLWD/caregivers prefer [ 23 , 35 , 36 ].…”

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

“… 37 When in denial, caregivers may prefer for clinicians to use language they perceive as less stigmatizing when disclosing the diagnosis to the patient (eg, “memory loss”). 37 Although not identified as a primary theme in the current analysis, some of the same clinician participants described concerns regarding the stigma surrounding terms like “Alzheimer’s disease” and/or “dementia.” 38 However, prior guidance regarding giving dementia diagnoses recommends that clinicians give a specific diagnosis to avoid the risk of patients and families misunderstanding the diagnosis and to better inform treatment and prognostic planning. 22 …”

“…37 Although not identified as a primary theme in the current analysis, some of the same clinician participants described concerns regarding the stigma surrounding terms like "Alzheimer's disease" and/or "dementia." 38 However, prior guidance regarding giving dementia diagnoses recommends that clinicians give a specific diagnosis to avoid the risk of patients and families misunderstanding the diagnosis and to better inform treatment and prognostic planning. 22 Clinician barriers to disclosing a dementia diagnosis included communicating diagnostic uncertainty, discomfort breaking bad news, and lack of time.…”

Triadic Communication in Medical Encounters Including Individuals With Dementia

“…• 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...…”