Triadic Communication in Medical Encounters Including Individuals With Dementia

Abstract

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.

Effective clinician-patient communication is associated with higher patient satisfaction¹ and improved healthcare outcomes.² Strategies to enhance communication can improve patient experiences and satisfaction, as well as provider experiences.^3,4 Individuals living with cognitive impairment and dementia are more vulnerable to experiencing poor healthcare communication⁵; however, and cognitive impairment is a known barrier to shared decision-making between patients and clinicians.^6–8 Support from others, like family, can facilitate shared decision-making,^6,7 but involving additional individuals other than the patient and clinician during medical encounters can also complicate communication and decision-making.⁹ During triadic encounters (between clinician–patient–caregiver), caregivers fill various roles including instrumental support (e.g., travel), informational support, and emotional support, as well as address their own needs as caregivers. Although such support may be helpful, persons living with dementia (PLWD) and caregivers can disagree about the role they should play in medical encounters, and dominating or demanding behaviors from the companion may interfere with communication.⁹ Within dementia medical encounters, some research suggests that caregivers often do not accurately understand the values and care preferences of PLWD.¹⁰ Furthermore, research on communication and decision-making in dementia commonly focuses on the perspectives of caregivers and family members rather than PLWD.¹¹

Given the importance of communication to healthcare outcomes and the relative paucity of research on healthcare communication in cognitive impairment, we conducted a scoping review to identify what is known about triadic (clinician–patient–caregiver) communication in mild cognitive impairment (MCI) and dementia in clinical settings.

METHODS

Because the goal of this review was to investigate what is known about triadic communication in MCI and dementia, we chose a systematic scoping review as the optimal approach. Scoping reviews aim to summarize the scope of a field of study.¹² Methods and findings are reported in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews (Supplemental Digital Content 1, http://links.lww.com/WAD/A489).¹³ The protocol was not registered because PROSPERO does not accept protocols for scoping reviews.

Eligibility Criteria

Studies were eligible for inclusion if they investigated communication in a clinical or healthcare setting in the context of MCI or dementia and the stated purpose was to investigate some component of clinical communication (clinician–patient, clinician–caregiver, or clinician–patient–caregiver [triadic] communication). Clinicians were defined as physicians, advanced practice providers (nurse practitioners or physician assistants), or PhD neuropsychologists. Nursing home and residential care settings were considered a healthcare setting, although communication within this setting had to be with an eligible type of clinician. Eligible study types included those using qualitative interviews, live or recorded observation of clinical communication, and surveys. Only studies in English were included. Studies were excluded if they focused only on caregiver-patient communication or nursing home staff (i.e., not clinicians) and resident interactions, were intervention based, focused on general geriatric populations (i.e., without a focus on cognitive impairment), or lacked empirical data (e.g., commentaries, letters to the editor, case studies without additional empirical data).

Information Sources and Search Strategy

A medical librarian (PMJ) collaborated with the research team to develop the search strategy. Investigators searched five databases, including PubMed and CINAHL, for studies published from database initiation to October 2020. The search was updated for studies published from 2020 to June-July 2023. Search strategies included Medical Subject Headings and key word searches relating to the concepts of communication, triadic roles (physician/clinician, patient, caregiver), relationships between participants in triadic encounters (physician–patient relations, professional–family relations, family relations), and cognitive dysfunction (Supplemental Digital Content 2, http://links.lww.com/WAD/A490). Investigators identified relevant example articles in advance and used these to validate the search strategy. Investigators also reviewed reference lists to identify relevant publications that might have been missed by the search. In addition to the structured database searches, authors cross-referenced studies in two similar systematic reviews,^14,15 screening studies that were not retrieved through the original search, and conducted forward reference searching in PubMed until no new citations were identified for all studies included in the final review.

Screening Process

The systematic scoping review utilized Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia) available through the University of Florida. All authors (except P.M.J. and N.B.) participated in the screening and selection process. Two investigators independently reviewed titles and abstracts of search results. Items selected by at least one reviewer were retrieved for full-text evaluation. Two investigators then reviewed each article identified for full-text review. Discrepancies were resolved by discussion and consensus. If consensus could not be reached, a third investigator reviewed the article for inclusion.

Data Extraction, Analysis, and Items

Each article was extracted by two investigators using a data extraction form developed by authors via Google Forms. The form was pilot tested with multiple articles to improve standardization and extraction. The final data extraction form gathered data regarding type of clinician in the study (e.g., physician, advanced practice provider), study design, type of data collection, participant types (clinician, patient, caregiver), type of caregiver (e.g., spouse, child), communication scenario (e.g., diagnosis, advanced care planning, medication management), communication outcomes in the study, other healthcare outcomes studied, type of data analysis (quantitative, qualitative, mixed methods), whether the study specifically investigated triadic communication (i.e., included data from all triad members), and whether the study provided any strategies for triadic communication. Responses from the data extraction form were downloaded from Google Forms into Microsoft Excel, and responses were compared between investigators. Differences were flagged and then resolved by consensus, and results from each extraction category were summarized.

RESULTS

Study Selection

The search resulted in 5310 studies retrieved; 1884 duplicates were then removed (Fig. 1–PRISMA flow diagram). Of the 3426 original studies initially screened, 3314 were identified as irrelevant by reviewers. Of the remaining 112 full-text studies assessed for eligibility, 68 studies were excluded. Studies were excluded because they were not about clinical communication (n= 20), did not have communication as the stated purpose of the study (n= 17), lacked empirical data (n=6), focused only on caregiver-patient communication (n=4), did not include participants with cognitive impairment (n= 4), focused only on the context of residential care (n=4), were intervention-based (n= 4), were not in English (n= 3), or were part of simulated conversations (e.g., standardized patients), represented a conference abstract, examined outcomes not related to communication, reflected a teaching or best practice tool, did not meet requirements for included clinician type, or reflected a duplicate (n= 1 each). The remaining 44 studies were included in the scoping review.

FIGURE 1.

PRISMA flow diagram. Including number of studies identified, screened, and included in the final review. PRISMA indicates Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Study Characteristics

As shown in Table 1, more than one-third of the studies were set in the United States, with other studies originating from 8 other countries. Over half of studies measured clinician, patient, and caregiver communication. Several studies used more than one method, with half of studies including some form of observation or recording and half of studies using interviews or focus groups. Most studies provided findings that described the communication process, including which participant(s) spoke most frequently during interactions, without measuring a specific communication outcome (e.g., satisfaction with communication). Half of studies provided results specifically pertinent to the communication triad of clinician–patient–caregiver.

TABLE 1.

Description of 44 Included Articles

Study Characteristics	n (%)*
Study location
United States	18 (41%)
The Netherlands	8 (18%)
United Kingdom	5 (11%)
Israel	3 (7%)
Australia	3 (7%)
Canada	2 (5%)
Spain	2 (5%)
Belgium	2 (5%)
Japan	1 (2%)
Participant type
Clinician, patient, caregiver	25 (57%)
Clinician	7 (16%)
Patient, caregiver	5 (11%)
Caregiver	4 (9%)
Clinician, caregiver	3 (7%)
Data collection†
Interviews/focus groups	22 (50%)
Audio or video recordings	19 (43%)
Surveys	17 (39%)
Electronic medical records	4 (9%)
Consensus/Delphi approach	2 (5%)
†Used more than one method	18 (41%)
Communication outcome
Descriptive only	34 (77%)
Descriptive with barriers/facilitators	4 (9%)
Congruence	3 (7%)
Shared decision-making	2 (5%)
Satisfaction with communication	1 (2%)

^*Rounded to whole numbers.

^†Some studies used more than 1 data collection method.

Results of Synthesis

Studies were divided by communication scenario: diagnosis (n=22), general communication skills (n= 16), and advanced care planning (n=6) (Table 2). Studies mostly contained descriptive data about the interaction (e.g., frequency of communication, descriptions of clinicians’ communication behaviors when delivering the diagnosis). Some studies also included recommendations for how communication should take place or communication strategies that clinicians may find helpful during triadic interactions (Table 3). Articles are organized and described below based on communication scenario.

TABLE 2.

Overview of Included Studies and Results

Author, Year and Country	Participant type	Data Collection Method(s) and Sample Size	Communication Outcome	Summary of Results
Diagnosis (n= 22) Abe, 2019, Japan16	Clinician	Interviews (n=24)	Descriptive	• PCPs’ decision to disclose patients’ dementia diagnosis was based on who to give diagnosis to, clarity of the disclosure and prognosis, and communication adjustments to make during the disclosure
Brodaty, 1990, Australia17	Caregiver	Survey (n=188)	Descriptive	• Most of the time the diagnosis was given to the recipient that caregivers preferred. • Most caregivers reported not being given any information on management or prognosis of the disease
Byszewski, 2007, Canada18	Patient, caregiver	Interviews (n=27 patients and 29 caregivers), focus groups (n=12 caregivers), A/V recordings (n=27)	Descriptive	• Most participants agreed that the diagnosis should be disclosed to patients and caregivers. • Recommendations for disclosure included using team-based approaches, providing forewarning, discussing possible causes, using layman’s language, being straightforward and open to emotion, and providing hope
Dooley, 2018, UK19	Clinician, Patient, Caregiver	A/V recordings (n= 81 triad interactions)	Descriptive	• Five stages of the diagnostic triadic interaction included 1) eliciting patient’s orientation to the purpose of the meeting, 2) eliciting pt. perspective on symptoms, 3) discussing test results, 4) delivering the diagnosis by name, and 5) discussing treatment and support. • Sometimes interactions included a sixth stage –discussing prognosis
Fruijtier 2019, the Netherlands20	Clinicians, Patients, Caregivers	Survey and Delphi consensus (n= 50 clinicians, 60 patients, 62 caregivers), focus groups (n=4 clinicians, 6 patients and 7 caregivers)	Descriptive	• Three groups achieved consensus on 17 topics collapsed into four categories, including information about: 1) diagnostic testing, 2) test results, 3) diagnosis, and 4) practical implications
Fruijtier 2020, the Netherlands21	Clinicians, Patients, Caregivers	A/V recordings (n=32 clinicians, 71 patients and 69 caregivers	Descriptive	• Information about diagnostic testing and results is most commonly discussed, and diagnostic and prognostic information is least frequently discussed. Patients and care partners rarely initiate a topic, though when they do, it is most often about diagnostic or prognostic information
Gruters, 2021, the Netherlands22	Patient, Caregiver	Focus groups (n=14 patients and 13 family members)	Descriptive	• Identified three themes in the diagnostic and disclosure process: uncertainty, early diagnostic paradox, and knowledge utilization. The need for a follow-up consultation after receiving the diagnosis was reported. • Clinicians can reduce uncertainty by using clear communication, limiting interruptions, and paying attention to contextual factors. The diagnosis should be given in understandable language
Karnieli-Miller, 2012, Israel23	Clinician, Patient, Caregiver	Interviews (n=6 clinicians, 25 patients and 25 caregivers) A/V recording (n=25 triad interactions)	Descriptive	• The triadic encounter was found to be a shift between dyadic encounters. There is a lack of explicit rules about the presence and role of a third person. • Physicians tended to dominate the conversation, but also played a managing role in the involvement of the patient and companion
Karnieli-Miller, 2007, Israel24	Clinician, Patient, Caregiver	Interviews (n=14 patients, and 3 physicians) A/V recordings (n=14)	Descriptive	• Physicians did not struggle with whether or not to disclose (all agreed it should be disclosed) but had difficulty with how to frame the diagnosis during disclosure. • In encounters, clinicians’ disclosure behaviors included keeping encounters short, avoiding elaboration, confirming comprehension, and using explicit terminology and fractured sentences
Lecouturier, 2008, U.K.25	Clinicians, Patients, Caregivers	Interviews (n=4 patients and 6 caregivers) consensus panel (n=10 HCPs) preconsensus panel survey (n=8 HCPs)	Descriptive; Congruence	• Eight categories of behaviors were identified: 1) preparing for disclosure, 2) integrating family members, 3) exploring patient’s perspective, 4) disclosing dx, 5) responding to patient reactions, 6) focusing on QoL and well-being, 7) planning for the future, and 8) communicating effectively (including developing rapport, using appropriate verbal/non-verbal communication, use active listening skills, and involve the patient)
Peel, 2015, U.K.26	Clinicians, Patients, Caregivers	A/V recordings (n=15 patients and 14 caregivers)	Descriptive	• Highlights the complexities of giving a dementia diagnosis and difficult interpersonal dynamics. Some clinician(s) ‘shrouded’ the bad news diagnosis in various ways
Phillips, 2012, Australia27	Clinicians	Interviews (n=45)	Descriptive	• GPs have widely varying practices and views on whether they should give a dementia diagnosis or leave it to a specialist. Three main themes challenges included: 1) the GPs’ confidence in having a correct dx of dementia to disclose; 2) acting in patients’ best interests in disclosure of the dx, and 3) dealing with the negative implications of the dx. GPs felt it was important to involve family, but confidentiality can be hard to navigate. They suggested offering hope and avoiding the word ‘dementia.’
Sakai, 2011, U.S.28	Clinician, Patient, Caregiver	Survey (n= 86 patients and 86 companions) A/V recordings (n= 86 triad interactions)	Descriptive	• Physicians engaged in most of the communication, followed by companions, and lastly patients. Companions spoke more when the patient had dementia
Saunders, 1998, U.S.19	Clinician, patient, sometimes Caregiver	A/V recordings (n=17 patients, 4 clinicians and 5 family members)	Descriptive	• Humor was not used often, though patients were most likely to initiate humor when used. Topics included personal concerns and testing issues. Patients were more likely to use self-denigrating humor
Saunders, 2022, Scotland30	Clinicians	Interviews (n=19)	Descriptive	• There were many clinician differences in attitudes and approaches to MCI, including whether to refer to ‘memory’ or ‘the brain’, telling the pt. what the expected norm for the pt.’s age would be, and discussing prognosis and/or referring to any evidence about the likelihood of MCI turning into dementia. All clinicians reported emphasizing to patients that MCI is not a dementia dx and conveying uncertainty around what to expect in the future
Visser 2019, Netherlands31	Clinicians, patients, caregivers	Survey (n=136 patients and 136 caregivers), A/V recordings (n=136 triad interactions/41 clinicians), medical records (n= 136)	Shared decision-making	• Though clinicians gave info. about diagnostic testing, they did not frequently invite questions or check understanding. Clinicians did not involve patients in decision-making. Patients and caregivers did not state their info. or involvement preferences, though about 25% wanted more info
Visser 2020a, Netherlands32	Clinicians, patients, caregivers	Survey audio or video recording (n=22 clinicians, 78 patients and 73 caregivers for both methods)	Descriptive	• No apparent relationships were found between pt./clinician characteristics and whether or how often clinicians expressed uncertainty. Uncertainty expressions pertained most frequently to pt.‘s diagnosis and symptom progression such as the unpredictability of the future and limits to available knowledge
Visser 2020b, Netherlands33	Clinicians, patients, caregivers	Survey (n= 10 clinicians), audio or video recording (n=10 clinicians, 13 patients w/ MCI and 13 care partners), medical records (n= 13)	Descriptive	• Clinicians differed in how they informed patients/caregivers about MCI. Clinicians rarely informed them about the pt.’s risk of developing dementia, and often informed them about the expected course of symptoms such as stabilizing or improving. They did not engage in a conversation on long-term (care) planning
Wollney, 2022a, U.S.34	Clinicians	Interviews (n= 15)	Barriers/ Facilitators	• Clinicians described barriers at the patient/caregiver-level, clinician/clinical-level, and triadic interaction barriers including: pt./cg. lack of social support and misunderstanding the dx, clinician difficulty giving back news and lack of time, and challenges meeting multiple goals or needs and family requests for non-disclosure
Wollney, 2022b, U.S.35	Clinicians	Interviews (n= 15)	Descriptive	• Clinicians reported using patient- and family-centered communication practices (including checking patient understanding, communicating empathically, and involving family members). • Clinicians differed in whether they gave a specific diagnosis or used general terms (e.g., “memory disorder”)
Wynn, 2019, U.S.36	Clinician, patient, caregiver	Survey (n=84 patients and 84 caregivers), A/V recordings (n=84 triad interactions)	Descriptive	• Clinicians spoke most frequently during interactions. • Clinicians did less positive rapport building when they were talking with patients with mild dementia
Zaleta 2010, U.S.37	Clinician, patient, caregiver	A/V recordings (n=54 triad interactions	Congruence	• Patient-companion and patient/physician dyads exhibited just fair agreement with one another regarding contents of the diagnostic conversation. • Agreement was much higher between physician-companion dyads
General communication skills (n = 16)
Aufill, 2019, U.S.38	Clinicians, patients, caregivers	Survey (n=200) A/V recordings (n=93 triad interactions among 14 clinicians	Descriptive	• Clinicians have the most memory-related discussions with patients living with dementia, followed by patients living with MCI, then patients with no memory-related diagnosis. • When controlling for variables like age, gender, education, MMSE score, practice type, memory-related discussions were highest among patients with MCI
Forbes, 2013, Canada39	Clinician, patient, caregiver	Interviews (n= 2 clinicians, 2 patients and 3 caregivers)	Descriptive	• Knowledge sharing was achieved through developing trusting relationships, accessing and adapting the information, and applying the information. • Culturally sensitive approaches were essential to developing trusting relationships
Girones, 2015, Spain40	Patient, family caregiver	Survey (conducted orally) (n=83 patients [19 patients had dementia])	Descriptive	• Almost all of the patients wanted to be informed about their diagnosis. A majority of patients actively solicited information; elderly and frail patients tended to do so less. • The families were almost always informed of the diagnosis, and physicians were rated higher by patients when medical explanations were given to family members
Givens, 2012, United States41	Caregiver/healthcare proxy	Interviews (n= 16)	Descriptive	• There was almost unanimous dissatisfaction with the level of communication from nursing home physicians. Caregivers felt unable to act as patient advocates and engage in shared decision-making when there was a lack of physician communication regarding medical events
Green, 2020, U.S.43	Clinician, patient, caregiver	A/V recordings (n=93 triad interactions) survey (n=14 clinicians), medical records (for patient demographics/background, n=93)	Descriptive	• Three main themes were identified during clinician communication about medication: (1) Key principles of optimal prescribing discussed by clinicians; (2) Clinician strategies to establish partnership with patients and companions (shared decision-making about medication use); (3) Factors complicating optimal prescribing (challenges preventing clinicians working together with patient and companion to optimize prescribing/deprescribing)
Griffin, 2020, U.S.38	Patients, caregivers	Focus groups (n=15 patients with MCI and 78 caregivers)	Descriptive	• Themes included relationship rapport, information exchange, and decision-making, which were seen as core elements of triadic encounters
Hunsaker, 2010, U.S.44	Clinician, patient, caregiver	Survey (n=73), A/V recordings (n=23 clinicians, 25 patients and 25 caregivers)	Descriptive	• Dementia was discussed in almost all visits, and in about half of visits, this was initiated by the physician. Caregivers were more likely than patients to initiate a discussion about dementia. • Disruptive behaviors were reported by majority of caregivers, yet rarely discussed during visits
Milte, 2015, Australia45	Clinician, Patient, Caregiver	A/V recordings (n=59)	Shared decision-making	• Dementia was the 8th most discussed topic during visits out of 12 topics discussed. • Discussion of ACP was almost always brought up by the geriatrician. • Clinician shared decision-making competency did not differ across patient’s level of cognitive impairment
Powell, 2023, U.S.46	Patients, caregivers	Survey (n= 7,070 community dwelling adults, some accompanied with caregiver/proxy)	Descriptive	• Presence of hearing loss and dementia in patients was associated with care partners assuming a more active role in medical visits, including facilitating understanding, speaking to the doctor about the patients health, and reminding the older adult of questions to ask
Quinn, 2013, England/UK47	Clinician, patient, caregiver	Interviews (n=18[6 triads])	Descriptive	• An overarching dynamic of “negotiating the balance” emerged (i.e., an ongoing struggle of the members to balance the views of the other members against their own needs)
Riffin, 2021, U.S.48	Clinicians, Caregivers	Interviews (n=18 caregivers and 16 HCPs)	Descriptive	• caregivers and clinicians described roles that caregivers assume during the communication processes: historians, interpreters, and advocates. • Two features of problematic communication were receiving inadequate information, and interpersonal conflict about the care recipient’s pain. • Ambiguity around pain and dementia, as well as preexisting beliefs and attitudes, contribute to communication challenges
Risco, 2016, Spain49	Clinician, patient, caregiver	Focus groups (total n =37)	Descriptive; Barriers/Facilitators	• Pt./cg. themes included: insufficient information provided, specific dementia care needs, and acceptance of long-term care/institutionalization. • Clinician themes included: insufficient communication between healthcare providers, importance of giving information that is appropriate for the current disease stage of the PLWD), and challenges in understanding and coordinating care needs with caregivers at home
Saunders, 2011, U.S.50	Clinician, Patient, Caregiver	A/V recordings (n=31 patients with CI, 29 patients w/out CI and 8 clinicians)	Descriptive	• Patients with talked less often than patients without CI. Companions talked more during interactions when the patient had cognitive impairment (CI). • Use of humor was used more by patients with CI than those without CI
Schmidt, 2009, U.S.51	Clinician, patient, caregiver	Survey (n = 46) A/V recordings (n= 23 triad interactions)	Satisfaction w/ comm	• Physicians’ total verbal participation during visits was highest, followed by caregivers, then patients. • Patient satisfaction was not related to verbal participation by any of the triad members
Vick, 2018, U.S.52	Clinicians, patients, caregivers	Interviews (n=20 patient/caregiver dyads), Ffcus groups (n=10 primary care clinicians)	Descriptive	• Family companions commonly facilitate communication during triadic medical encounters by 1) advocating for patients, 2) ensuring the accuracy of information exchange, and 3) preserving rapport. • Multiple communication challenges in triadic medical encounters including disagreement or confusion about 1) the role of the patient and companion, 2) patient health issues (clinician confusion about the most accurate source of information), and 3) establishing an actionable visit agenda
Werner, 2004, Israel53	Clinician	Survey (n= 141)	Descriptive	• Physicians reported that patients should be addressed directly for questions, while caregivers should be addressed for almost all aspects of the interaction
Advanced care planning (n = 6)
Hyejin, 2018, U.S.54	Caregiver	Interviews (n=10)	Descriptive	• Surrogates reported that clear explanations of clinical information and the opportunity to ask questions and reiterate what they heard were helpful in making treatment decisions. • Surrogates reported feeling respected and understood when providers expressed concern for them or their family member with advanced dementia and asked them about their emotional responses to decision-making
Tilburgs, 2018, Netherlands55	Clinicians, Patients, Caregivers	Interviews and focus groups (n not stated)	Descriptive; barriers/facilitators	• ACP is facilitated by an open relationship based on trust between clinician, pt., family cg. and includes discussing medical and non-medical issues. Clinician availability and time restraints are barriers to ACP, but transferring ACP tasks to case managers or practice nurses may help
Van Rickstal, 2023, Belgium56	Clinicians	Focus groups (n= 21)	Descriptive	• Clinicians focused on ACP relating to end-of-life decision-making, talking about prognosis in averages, and safeguarding patient hope. They cannot deny negative aspects, but these are difficult to disclose. Patient personality rather than age affected discussions. • Some caregivers may have a greater desire for ACP than patients and ACP was believed to particularly benefit family caregivers
van Soest-Poortvliet, 2015, Netherlands57	Clinician, caregiver	Interviews (n=45 clinicians and 20 caregivers) Descriptive	Descriptive	• Two primary strategies used by physicians to discuss ACP included waiting for a reason to discuss planning and taking initiative to discuss options. • Families who thought the ACP discussion timing was not right were less likely to be satisfied with physician communication
Vandervoort, 2014, Belgium58	Clinician, caregiver	Survey (n= 318 clinicians and 101 caregivers) Medical Records (n= 113 patients w/ dementia)	Congruence	• Nursing home residents rarely expressed their wishes regarding medical treatment and the direction of their care in the last phase of life. • 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

ACP indicates advanced care planning; A/V recording, Audio or Video Recording; HCP, healthcare professional.

TABLE 3.

Best Practices Recommendations for Communication in Dementia Clinical Settings

Recommendation	Description of recommendation:	Which may help to/with…
Use clear communication and avoid medical jargon	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 separate interactions with the providers (Griffin, 2020)43	Allow the patient to maintain dignity while clinicians can receive full and accurate information (Griffin, 2020)43
Develop a trusting relationship with patients and care partners	Develop trusting, supportive relationships as a foundation (Forbes, 2013)39	Make members feel comfortable sharing information with clinicians (Forbes, 2013)39
	Clinicians being sensitive, listening, and understanding surrogate needs (Hyejin, 2018)54	Build relationships by making surrogates feel respected and understood (Hyejin, 2018)54
	Build trust through honest and compassionate interactions (Griffin, 2020)43	Establish rapport and deliver quality care (Griffin, 2020)43
Use visual aids or written information	Care partners recommended receiving visual aids or written information during the diagnostic disclosure visit (Gruters, 2021)22	Increase information retention (Gruters, 2021)22
	Provide a topic list to patients and care partners beforehand (Fruijtier, 2020)21	Allow consultation preparation and stimulate participation (Fruijtier, 2020)21
	Provide written records (Riffin, 2021)48	Enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans (Riffin, 2021)48
Educate patients and care partners about dementia	Provide education regarding the course of dementia (Givens, 2012)	Family members ability to cope with stressors and know what they may expect in the future (Givens, 2012)
	In addition to delivering the diagnosis, give patients information about diagnostic testing, test results, and diagnosis implications (Fruitijier, 2019)	Empower patients and caregivers and help them get the most out of the consultation (Fruitijier, 2019)
Offer decision-making support	Support during the process of surrogate decision-making, including advance care planning (Givens, 2012)	Family members cope with stressors (Givens, 2012)
	Train providers in shared decision-making and how to resolve conflicts with caregivers and people with ADRD (Griffin, 2020)43	Establish patient–caregiver–provider trust; and prepare providers and caregivers to negotiate care if/when the patient can no longer make decisions (Griffin, 2020)43
	Collaborate and develop rapport-building strategies (Riffin, 2021)48	Validate the caregivers’ contributions and maximize team-based decision-making (Riffin, 2021)48
Collaborate with other members of the care team	Clinician coordination of care between members of the clinical team (i.e., in lieu of the caregiver coordinating care) (Griffin, 2020)43	Reduce caregiver burden or miscommunication about important medical information (Griffin, 2020)43
	Create a better system for sharing medical records (e.g., computer system) (Risco, 2016)49	Reduce interruptions in the care continuum and improve collaboration between providers (Risco, 2016)49
	Use of case managers or practicing nurses (Tillburgs, 2018)	Overcome problems concerning the development of a therapeutic relationship and available time (Tillburgs, 2018)
Develop communication skills about EOL care/ACP	Providers are encouraged to focus on developing expert communication skills for end-of-life care discussions (Hyejin, 2018)54	Effectively communicate about end-of-life (Hyejin, 2018)54
	Clinicians may need to find a balance between broadening ACP to medical, social and relational domains while simultaneously elaborating on specific patient concerns (VanRickstal, 2023)56	Cover all life-areas affected by dementia (VanRickstal, 2023)56
	Surrogates wanted clear descriptions of EOL care options, such as hospice, and for clinicians to invite them to ask questions, repeat back information, and review Physician Orders for Life-Sustaining Treatment forms (Hyejin, 2018)54	Surrogates’ ability to process EOL information (Hyejin, 2018)54
Engage in progressive disclosure of a diagnosis or dementia information	Some patients preferred a progressive diagnostic disclosure, or receiving information over several visits (Byszewski, 2007; Lecouturier, 2008)18,25	Increase patient ability to process and cope with the information and accept the diagnosis (Byszewski, 2007; Lecouturier, 2008)18,25
Spend alone-time with the patient before diagnostic communication	Some patients would have liked some time alone with clinicians prior to the triadic encounter to discuss the diagnosis (Byszewski, 2007)18	Help patients prepare and reflect their preferences for receiving a diagnosis (Byszewski, 2007)18
	Communicate directly with person with ADRD and provide opportunities for caregivers to have separate interactions with the providers (Griffin, 2020)43	Maintain patient autonomy and receive more detailed information from the caregiver (Griffin, 2020)43
Use culturally sensitive approaches	Use culturally sensitive approaches including cultural beliefs, values, language, religious beliefs/spirituality, and community history (Forbes, 2013)39	Develop trusting relationships (Forbes, 2013)39

ACP indicates advanced care planning; ADRD, Alzheimer disease and related dementias.

Diagnosis

Studies regarding diagnostic communication often focused on the frequency of communication or specific communicative behaviors (e.g., humor, verbiage used) during the interaction.^{19,21,28,29,31,36} As shown in Table 2, not all studies incorporated data from each participant in the triad. Findings focused on clinicians included physician uncertainty about to whom to communicate the diagnosis (e.g., patient or caregiver)¹⁶ and a description of clinicians’ typical process for delivering the diagnosis.¹⁹ One study described additional clinician functions during a consultation aside from communicating the diagnosis, such as playing a managing role for patients and caregivers during the interaction.²³

When considering all 3 participants in diagnostic conversations, studies found that caregivers tended to speak more frequently during the interaction when the patient had more severe dementia,^28,31,36 although in one of these studies caregivers still spoke less frequently than physicians and PLWD (clinicians 83%, patients 10%, companions 6%).²⁸ When faced with a dementia diagnosis, patients were sometimes more likely to use humor, including self-denigrating humor, during the diagnostic interaction, which may be a face-saving strategy.²⁹

Studies also reported on information needs. High levels of uncertainty may be experienced throughout the diagnostic disclosure for both patients and caregivers, regardless of dementia progression.^22,32 One study highlighted that although clinicians gave PLWD and caregivers information about diagnostic testing, they did not frequently invite questions or check PLWD/caregiver understanding.³¹ In the context of MCI, clinicians rarely informed individuals with MCI and their care partners about the person’s increased risk of developing dementia.³³ Another study reported that most caregivers (75%) said they did not receive any information on management or prognosis following a diagnostic interaction,⁵⁹ although clinicians’ expressions of uncertainty about a person’s future (e.g., symptom progression) did not seem to be driven by specific characteristics of the PLWD.³² Following diagnostic interactions, patients may be more likely to remember broad and important details from the disclosure meeting (e.g., that they have memory loss), whereas caregivers may remember more key/specific details of the interaction.¹⁸

In terms of recommendations for effective communication practices when disclosing a diagnosis, patients and their caregivers felt that the treating clinician (e.g., MDs, PAs, or NPs) should be the person to give the diagnosis, although caregivers also emphasized the need for nurses’ supportive role.¹⁸ Some patients preferred a progressive disclosure over multiple visits, as opposed to receiving all of the information at once.¹⁸ Clinicians can lessen the impact of the diagnosis for the patient by keeping encounters short, avoiding elaboration and using fragmented sentences, using visual aids, and using explicit terminology.^22,24,25 The need for a follow-up consultation after the diagnosis disclosure was also highlighted, and it may be helpful to have care professionals, such as a case manager or social worker, available to patients and/or caregivers for questions.²²

General Communication Skills

General communication skills included communication about dementia that was not specific to the diagnosis or end-of-life/advanced care. This included discussions about medication use and other treatments, dementia-related behaviors, and dementia care needs. Settings included primary care and geriatrics, neuropsychology/clinical psychology and psychiatry, and neurology. Similar to the diagnosis-specific studies, several general communication studies focused on describing the frequency of communication or communicative behaviors.^38,44,50,51 For example, one study found that primary care physicians initiated discussions about dementia-related behaviors in 47.8% of visits, while caregivers initiated it in 34.8% of discussions, and patients were the least likely to initiate discussions (17.8%).⁴⁴ When discussing dementia-related behaviors, memory-related behaviors were most frequently brought up and were discussed three times more often than disruptive behaviors. Although disruptive behaviors were reported by a majority of caregivers, this was rarely discussed during the interaction.⁴⁴ In addition, clinicians were found to have more memory-related discussions with persons living with MCI than PLWD when controlling for variables age, gender, education, and MMSE scores.³⁸

During a study of general clinical encounters, caregiver participation was higher than participation of the PLWD (31% vs. 16%).⁵¹ In this study, caregiver satisfaction with physician communication was related to caregiver frequency of communication (higher verbal participation; higher satisfaction). No relationship was found between patient satisfaction and patient frequency of communication.⁵¹ One study also noted the use of humor by PLWD during general interactions.⁵⁰

In terms of triadic communication, one study found an overarching dynamic of negotiating the balance between each member of the triad.⁴⁷ Shared decision-making was one strategy clinicians used to help negotiate this balance and establish partnerships with patients and companions,⁶⁰ and it was seen as an essential part of triadic interactions, along with building relationships and rapport and exchanging information.⁴³ Several studies identified that in the setting of cognitive impairment, caregivers take on an advocate role for PLWD.^43,52,61 Additional caregiver roles included acting as historians and interpreters for the PLWD.⁶¹ In response to a hypothetical scenario, clinicians reported that they would address the patient directly for questions, whereas caregivers would be addressed for almost all other aspects during the interaction, such as giving information. Clinicians also indicated that they would try to work with the family when making decisions.⁵³ Clinician use of culturally sensitive approaches was identified as essential to developing trusting relationships.³⁹ Interviews with a rural First Nations community identified that clinicians, patients, and caregivers can engage in knowledge sharing by developing trusting relationships, accessing and adapting information, and applying information.³⁹

Barriers to effective communication about dementia included disagreement or confusion about the role of the PLWD and caregiver, clinician uncertainty about the most accurate source of health information regarding the PLWD, interpersonal conflict, and not establishing an actionable visit agenda.^52,61 Barriers also included time constraints, such as short visit times, which contributed to insufficient information and communication with clinicians.^49,62

Caregivers recommended that clinicians provide resources, such as information about dementia day care centers and support groups, and valued support through home health visits and phone calls.⁴⁹ In addition, caregivers recommended greater caregiver education regarding the course of dementia and wanted support during the process of surrogate decision-making.⁴¹ Lack of sufficient information may motivate or create a need for caregivers to look for information elsewhere, such as books, online, or friends.⁴⁹

Advanced Care Planning

Communication about advanced care planning (ACP) is facilitated by having an open relationship that is based on trust between all members of the triad.⁵⁵ Some physicians reported being proactive about ACP, whereas others reported waiting for a reason to discuss it.⁵⁷ In the context of admission to a nursing home, physicians typically took initiative in ACP communication.⁵⁷ Family members included in this study were more satisfied when their goal of patient comfort was established.⁵⁷ Caregivers may have a greater desire to discuss ACP than PLWD during triadic interactions.⁵⁶ This may be due to the cognitive symptoms associated with advanced dementia. For instance, communication about end-of-life care for PLWD residing in nursing homes was most common between family physicians and the PLWD’s relatives (71%) than between physicians and PLWD/nursing home residents (22%).⁵⁸ However, recall congruence between the family physician, nurse, and relative of the PLWD regarding what topics were addressed during ACP conversations (e.g., discussing advanced directives, proxy for end-of-life decision-making) was low.⁵⁸ In another study in a nursing home setting, family members were more satisfied with nursing staff than physician communication. This was partly related to a lack of reported physician communication regarding medical events. Family members felt the lack of information left them unable to act as patient advocates and engage in shared decision-making.⁴¹

Family members recommended that in advanced dementia care within nursing home settings, clinicians should provide more education about the course of dementia⁴¹ and more support during the surrogate decision-making process, including ACP.⁴¹ Family members reported that in addition to the opportunity to ask questions and reiterate what they heard, receiving clear explanations of clinical information was helpful in making treatment-related decisions.⁵⁴ Furthermore, family members reported feeling respected and understood when clinicians expressed concern, showed empathy, and asked about the psychosocial/emotional impact that proxy decision-making may have on the family member.⁵⁴ Barriers to communicating about ACP included clinician availability and time, though transferring ACP tasks to case managers or practice nurses may be an alternative to facilitate ACP conversations.⁵⁵

DISCUSSION

The goal of this systematic scoping review was to provide an overview of published research on triadic communication in medical encounters in the setting of MCI or dementia. With increasing numbers of MCI and dementia diagnoses coupled with a growing recognition of the importance of clinical communication to outcomes, understanding and improving clinical communication in these triadic dementia settings has the potential to improve dementia care and patient and caregiver outcomes.

Our review provides an update to systematic reviews that have examined triadic communication in healthcare interactions in dementia. The most similar systematic review on triadic communication in dementia care settings was conducted over 8 years ago,¹⁴ and subsequent reviews on this topic have only included qualitative studies.¹⁵ Other reviews on triadic communication have focused on triadic communication more broadly across a variety of health contexts, and have excluded triadic communication in dementia care.^9,63

The descriptive studies in the current review suggest that communication varies across different triadic encounters in MCI and dementia, with different degrees of clinician, patient, and caregiver participation in discussions and different individuals taking the lead at various points. There is no identified “ideal” division of communication time between participants in triadic encounters, but some conversations require more clinician communication time (e.g., when giving a diagnosis and providing education). However, caregivers want to make sure they are given a chance to communicate concerns or needs and are heard by clinicians, which affects their satisfaction with clinician communication.^17,22,45,49 In addition, it is important that clinicians and caregivers are aware that individuals with dementia may use face-saving communication strategies during encounters, such as humor.^29,50

Several studies included in this review found a gap between the amount of education that individuals (especially caregivers) wanted from clinicians and the amount or quality of what they received, with a desire for increased clinician communication on topics such as prognosis and opportunities for finding support.^41,43,49 This is consistent with other studies in dementia, where education—especially about prognosis and expectations—is consistently described as an unmet need by both PLWD and caregivers.^64–66

Results of this systematic scoping review provide specific recommendations for clinicians in dementia settings, including using clear communication and avoiding medical jargon, involving a family member, developing trusting relationships with patients and caregivers, using visual aids or written information, providing education about dementia, collaborating with other members of the care team, offering decision-making support, communicating about end-of-life care and advanced care planning, and using culturally sensitive approaches (Table 3). 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

In addition to informing clinical care, this review also has implications for future research on triadic communication in dementia settings. Communication was conceptualized and measured differently across studies identified for this review, making it difficult to collectively understand important communication outcomes. For example, “communication” sometimes described frequency (i.e., the length of time that each participant talked during the interaction),²⁸ whereas other studies focused on the quality of communication (e.g., developing trusting relationships)³⁹ or communication strategies or approaches (e.g., clinicians using visual aids).²² Communication research should clearly delineate the aspect of communication being observed and weigh the pros and cons of explicating communication in certain ways. For instance, observing the frequency of communication during diagnostic communication is likely to find clinicians spending the highest proportion of time talking due to the context of the interaction (e.g., going over testing results, communicating the clinical diagnosis and information about the diagnosis, discussing resources), yet does not inform helpful clinician communication approaches. In addition, future research should expand the prescriptive literature (i.e., recommendations for how communication should take place) by assessing important functions, or purposes, of certain communication approaches (e.g., asking questions, using humor) used by individuals with dementia, caregivers, or clinicians in triadic dementia care settings. Specific communication approaches can then be evaluated by subsequent outcomes (e.g., higher caregiver and patient satisfaction, trust, adherence to medications, likelihood of attending follow-up appointments, etc.) to assess the helpfulness or effectiveness of approaches.

Limitations

The current review focused only on patient and caregiver/family caregiver communication in healthcare settings, but patient-caregiver, patient-family and family-family interactions (within and outside clinical settings) can provide insight into and/or impact triadic healthcare communication. We excluded intervention-based studies after our initial search found only one relevant intervention-based study, and this study did not align with the aim of this review.⁶⁸ The requirement for publication in English may have resulted in missing some relevant literature. While one identified study was conducted with First Nations communities, there was generally a lack of diversity in included articles, as is common in healthcare research. Given the role of culture in communication and healthcare contexts, results may not generalize to all populations.

CONCLUSIONS

This systematic scoping review found a paucity of evidence to inform optimal triadic (clinician–patient–caregiver) communication in dementia settings. Existing research suggests that clinicians should clearly communicate, provide education for individuals with dementia and caregivers, and provide information about care resources. To optimally inform practice, future research should focus on helpful communication strategies or approaches that individuals with dementia, caregivers, and clinicians can use to improve outcomes. Once optimal strategies for triadic communication are further identified, research should also include development and validation of communication skills trainings for caregivers/family members, clinicians, and/or individuals with dementia to facilitate effective communication.