Triadic Communication in Medical Encounters Including Individuals With Dementia: A Scoping Review.

PURPOSE: The overall goal of this review was to identify what is known about triadic (clinician-patient-caregiver) communication in mild cognitive impairment (MCI) and dementia care settings throughout the care continuum. METHODS: Using a structured search, we conducted a systematic scoping review of relevant published journal articles across 5 databases. Study titles/abstracts and selected full-text articles were screened by 2 investigators in Covidence systematic review software. Articles were excluded if they were not about clinical communication, focused only on caregiver-patient communication or communication in residential care, were interventional, lacked empirical data, or were not in English. Extracted data were documented using Google Forms. RESULTS: The study team screened 3426 article titles and abstracts and 112 full-text articles. Forty-four articles were included in the final review. Results were categorized by 3 communication scenarios: diagnostic communication (n=22), general communication (n=16), and advanced care planning communication (n=6). CONCLUSIONS AND RELEVANCE: Across the included articles, the conceptualization and assessment of communication lacked homogeneity. Future directions include addressing these research gaps, establishing recommendations for clinicians to effectively communicate with individuals with dementia and caregivers, and creating and testing communication skills trainings for caregivers/family members, clinicians, and/or individuals with dementia to facilitate effective communication.

Research Priorities of Individuals and Caregivers With Lewy Body Dementia: A Web-based Survey.

INTRODUCTION: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential. METHODS: A web-based survey of people living with LBD and current and former caregivers of people with LBD queried research priorities through forced ranking and exploration of burden of LBD symptoms. Specific caregiving needs in LBD and perceptions of research participation were also investigated. RESULTS: Between April 7, 2021 and July 1, 2021, 984 responses were recorded. Top research priorities included disease-modifying therapies and improved disease detection and staging. People with LBD were interested in pathophysiology and more bothered by motor symptoms; caregivers were interested in risk factors and symptomatic therapies and more bothered by neuropsychiatric symptoms. Few available LBD treatments and resources were rated as helpful, and many valuable services were never received. Previous participation in LBD research was infrequent, but interest was high. DISCUSSION: People with LBD and caregivers highlighted the need for research across all aspects of LBD, from pathophysiology and disease modification to prognosis, education, symptomatic treatments, and caregiver support. Funders should increase support for all aspects of LBD research to target the many needs identified by individuals and families living with LBD.

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

Objective: As the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers. Methods: We conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads. Results: The groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships. Conclusion: Participants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers. Innovation: Limited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.

Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

Background and Objectives: Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach. Methods: We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus. Results: The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B). Discussion: Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.

Clinician approaches to communicating a dementia diagnosis: An interview study.

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.

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.

Frequency of suicidal ideation and associated clinical features in Lewy body dementia.

INTRODUCTION: Neuropsychiatric disturbance is common in individuals with Lewy body dementia (LBD). Despite this, there is minimal research regarding suicide risks in this population. METHODS: This study was a retrospective review of a prospectively-collected database at a tertiary movement disorders clinic. Database participants with an LBD diagnosis at their most recent visit and at least one complete Beck Depression Inventory-II (BDI-II) were included. Additional measures included demographics and measures of cognition, psychiatric symptoms, motor function, and the Parkinson Disease Questionnaire-39. The frequency of suicidal ideation was assessed using question 9 of the BDI-II. Features associated with a BDI-II score greater than zero were assessed using logistic regression. RESULTS: The database included 95 individuals with LBD and at least one BDI-II (visit years 2010-2020). Most participants were older men who identified as white. Eighteen individuals (18.9%; 95% CI 12.3%-28.0%) reported thoughts of killing themselves without an intent to carry them out (BDI-II = 1). No participants reported a desire or plan to kill themselves. The presence of SI was associated with measures of depression, anxiety, and emotional well-being, but not with demographics, measures of disease severity, or other psychiatric concerns. CONCLUSION: These findings emphasize the importance of routine screening for psychiatric symptoms in LBD and intervention when such concerns are identified. Interventions could include pharmacologic (e.g. depression treatment) and non-pharmacologic (e.g. firearm screening) approaches. More research is needed to assess suicidal ideation and suicide risks in large and more diverse LBD populations. Prospective studies should include measures of additional potential contributors to suicidality.