Culturally sensitive CLEAR guidelines on disclosing and communicating a diagnosis of dementia

Abstract

Providing a dementia diagnosis is challenging, especially in primary care and considering diverse patient backgrounds. The Alzheimer Society of Canada (ASC), the College of Family Physicians of Canada, and the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD) guideline group partnered with patients, care partners, and clinicians to generate contemporaneous guidance for primary care practitioners. While relevant to all communities, Black and Chinese Canadians were formally represented in working groups. A literature review identified needs areas. Informed by Guidelines International Network (GIN) principles and through iterative group meetings with all partners, these needs were explored and incorporated into guidance. The Compassionate Language and Empathetic Approaches for Respectful Dementia Disclosure (CLEAR) offers recommendations on: holistic engagement, fostering hope, acknowledging care partners, identifying disclosing clinicians, appointment structure and environment, person‐centered communication, specific discussion topics, and emotional supports, all through a cultural competence lens. These guidelines address communication challenges in disclosing a dementia diagnosis and enhancing care and support for persons living with dementia and their care partners.

Highlights

• Healthcare practitioners (HCPs) struggle with disclosing and communicating dementia diagnoses.

• Guidance is limited in primary care and different patient ethnocultural groups.

• We developed culturally sensitive guidelines with scripts and practical materials.

• Appropriate communication techniques and terminology are recommended in Compassionate Language and Empathetic Approaches for Respectful Dementia Disclosure (CLEAR).

• Patient‐centered and holistic approaches for the patient and care partner are emphasized.

1. INTRODUCTION

Globally, approximately 50 million people have dementia, a number expected to double every 20 years. ¹ In Canada, approximately 730,000 persons are living with dementia, increasing by 15 cases every hour. ² Dementia‐related burden affects health systems, individuals, and care partners and is thus a great public health concern. ³ Characterized by progressive impairments in cognition and behavior that impair function and independent living, Alzheimer disease (AD) accounts for approximately 70% of dementia cases. ⁴ , ⁵ Impairments in any of these cognitive, behavioral, or functional domains can prompt a health care assessment, especially for safety‐sensitive concerns like agitation, financial exploitation, or poor self‐care. ⁶ A dementia diagnosis can ensue.

Dementia is one of the most feared diagnoses among older adults, with studies demonstrating that receiving this diagnosis can profoundly impact a person's sense of identity, self‐esteem, and future outlook. ⁷ , ⁸ Unlike many other diagnoses, dementia directly affects cognitive function—perceived as the core of personhood. The clinical act of diagnosis, therefore, for a particularly stigmatized diagnosis like dementia, is a transformative act that can redefine a sense of self and social belonging. ⁹ Sequelae of the diagnosis can include stigma, loss of support, and breakdown of relationships, but also greater acceptance and improved social supports. ¹⁰ , ¹¹ Empathic and compassionate communication during disclosure is essential not only to convey the information but also to support the emotion and existential adjustments that follow. ¹²

Nonetheless, there is great variability in the dementia diagnostic journey, with differences in setting (primary vs. specialist care), type of workup completed, and time taken. ⁵ , ¹³ When it comes to communicating a dementia diagnosis, many healthcare practitioners (HCPs) experience difficulties. ¹⁴ In primary care, family physicians often struggle with disclosing a dementia diagnosis as well as involving individuals and families in care decision‐making. ¹⁴ Physicians often find it difficult to accurately assess patient preferences, leading to feelings of uncertainty about prescribed treatments. ¹⁵ The 2021 World Alzheimer Report highlighted that over 50% of persons with dementia (PWD) and their care partners were dissatisfied with how the diagnosis was disclosed. In particular, they highlighted a lack of adequate information at the time of diagnosis, suboptimal communication methods, and insufficient content, including the type of dementia, expected progression, and post‐diagnostic care. ⁵ Delivering a diagnosis can be one of the greatest challenges for physicians, with patients frequently reporting concerns over insensitive delivery, insufficient emotional support, and inadequate discussion of diagnosis, prognosis, treatment options, and follow‐up support. ¹⁶ In this context, care partners of PWD find five decision areas particularly problematic: accessing dementia‐related health and social services, care homes, legal‐financial matters, non‐dementia‐related healthcare, and making plans for the PWD if the caregiver becomes unable to provide care. ¹⁷

Overall, studies of PWD and care partners have found that clear communication, with details tailored to the individual, and inclusion of support resources are preferred approaches when receiving a dementia diagnosis. ¹⁸ This type of information should be incorporated into guidelines, which establish standardized expectations for clinical communication and reduce variation in how diagnoses are delivered across providers and settings. ¹⁹ The 1998 Alzheimer Society of Canada (ASC) guidelines recommended that affected individuals and their families should indeed be informed about the diagnosis, in light of emerging symptomatic therapies at the time, and in contrast to historical nihilism around dementia. ²⁰ In 2007, guidance was revised with concrete recommendations around diagnosis as a progressive patient‐centered process. This considers patient and family preferences, provision of education and support to minimize adverse psychological consequences of receiving a diagnosis, and commitment to post‐diagnosis follow‐up. ²¹ Now, with emerging disease‐modifying therapies and in the context of a pluralistic society, contemporaneous guidance is required, informed by expertise across the spectrum of clinicians and allied health care professionals, in partnership with a diverse group of PWD and care partners.

Guidance exists for providing a dementia diagnosis, especially in specialty care. ²² , ²³ , ²⁴ However, guidance on delivering a diagnosis of dementia specifically in primary care is more limited. ⁹ , ²⁵ Further, the growing emphasis on developing culturally responsive guidelines ²⁶ , ²⁷ highlights the need to update guidance considering diversity and ethnocultural differences. ²⁸ , ²⁹ This cultural context is important—in individualistic cultures, personal identity and autonomy may feel especially threatened. In collectivist cultures, family dynamics and communal identity may shape the disclosure experience differently. ¹¹ In this context, culturally competent disclosure refers to the ability to recognize and respond to differences in beliefs, values, and communication preferences across cultural groups. ³⁰ Research from international contexts suggests that preferences for diagnosis disclosure vary; some East Asian individuals may prefer family‐mediated communication, while members of Black communities may express mistrust toward health systems and prefer direct, transparent messaging. ³¹ To address the gaps, we reviewed the guidance literature with a focus on primary care and culturally informed recommendations to identify needs. We then addressed these needs by developing the Compassionate Language and Empathetic Approaches for Respectful Dementia Disclosure (CLEAR) guideline for disclosing and communicating a diagnosis of dementia, with complementary tools and materials to assist clinicians in applying these recommendations consistently and sensitively across clinical contexts.

2. METHODS

2.1. Scope

The primary focus of these guidelines is to support family physicians in effectively disclosing and communicating a diagnosis of dementia. However, the scope can extend to a wider range of HCPs and allied health professionals involved in dementia care, including specialist physicians (e.g., neurologists, geriatricians, and geriatric psychiatrists), nurse practitioners, and social workers.

With this focus in mind, working groups were formed with consideration of conflicts of interest at conception. Specifically, following Guidelines International Network (GIN) principles, the Topic Guideline Creation Panel and Steering Committee members disclosed competing interests prior to commencing work. Competing interest adjudicators (S.M. and J.M.‐B.) reviewed these disclosures and determined that there were no conflicts of interest, meaning no clinical revenue would be influenced by the guideline recommendations. The Topic Guidelines Creation Panel led the development of the guidelines by reviewing relevant literature, evaluating the evidence, and guiding the overall creation process.

Subsequently, with working group input and consultation throughout, guideline generation proceeded through several overlapping steps: (1) review of literature; (2) generation of evidence tables with quality of evidence; (3) choice of recommendations; (4) determination of certainty of recommendations; (5) solicitation of additional input from working groups and other partners; (6) revision of recommendations as necessary until consensus was obtained.

2.2. Literature review

A systematic review across MEDLINE, PsycInfo, Emcare, and grey literature sources (January 2013–February 2023) was conducted. The aim was to consolidate the evidence for preferences for dementia diagnosis disclosure, with consideration of patient, care partner, and healthcare provider perspectives. For inclusion, studies needed to be specific to dementia or directly address patient/provider preferences for how disclosure occurs; ultimately, 21 relevant articles were identified. Additional searches for Black and Chinese populations yielded insights into dementia disclosure processes for different ethnocultural communities. Critical appraisal was completed using the Assessing the Methodological Quality of Systematic Reviews (AMSTAR‐1) tool for syntheses. Evidence tables were generated based on the results of the review [search terms in Appendix S1]. Results of the rapid review were disseminated to participating groups and community consultations to solicit opinions and contributions.

2.3. Guidelines international standards

Best practices were ensured through adherence to the GIN standards. ³² GIN addresses panel composition, decision‐making process, conflicts of interest, objectives, development methods, evidence review, basis of recommendations, ratings of evidence and recommendations, guideline review, updating processes, and funding to ensure that high‐quality guidelines are generated (AGREE checklist in Appendix S2).

2.4. Processes used to create guidelines

Alongside the authors, six main groups and two collaborating organizations developed the guidelines. The ASC Project Management Team set timelines, managed the budget, and provided logistical and organizational support throughout the process. This team comprised scientific research, knowledge translation and education (KTE), and operations staff. The Steering Committee served as the decision‐making and advisory body overseeing the operations of the National Dementia Clinical Guidelines Program, playing a key role in how each guideline was managed and implemented. This team was co‐chaired by the Chief Research and KTE Officer of the ASC (S.S.) and the chair of the Canadian Consensus Conference on Diagnosis and Treatment of Dementia guideline group (Z.I.), and comprised topic experts and a person with lived experience (n = 6).

The Evidence Synthesis and Review Team conducted literature reviews for the guideline development, following established methods and applying the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) approach to assess the quality of evidence. These reviews formed the foundation for the Steering Committee's recommendations. This team comprised experts in evidence‐informed decision making in Canadian health care organizations (n = 7).

The Expert Advisory Group oversaw the development of the recommendations and played a key role in guiding their dissemination. This group comprised family physicians, geriatricians, dementia specialists, and topic experts (n = 12).

The Topic Guideline Creation Panel led the guideline development process, corroborated findings from other groups, and incorporated feedback on recommendations through an iterative process. This group comprised PWD, care partners, primary care physicians, allied health professionals, and dementia specialists, as well as liaison members from the Black and Chinese community working groups (n = 17).

Black (n = 5) and Chinese (n = 5) Canadian working groups were formed, with recruitment assistance from the Health Association of African Canadians and Yee Hong Centre for Geriatric Care. These community members contributed cultural considerations and insights on the dementia disclosure process throughout the development and finalization of the guidelines, as well as the associated KTE materials. The composition of all participating groups ensured diverse representation from relevant partners to provide broad ethnocultural perspectives, complementing the Black and Chinese Canadian perspectives, groups that were selected a priori. A full list of members from each group is presented in Appendix S3.

2.5. GRADE and certainty of evidence

The GRADE framework ³³ was employed to develop and present summaries of evidence gathered from the literature review and groups. This systematic approach facilitated guideline creation by considering the quality of evidence and additional factors including clinician and patient values and preferences, associated costs, feasibility, and risk‐benefit ratios. ³³ GRADE recommendations were either Strong or Conditional. Strong recommendations indicate that clinicians should follow the advised course of action and adhering to this recommendation could serve as a quality benchmark or performance measure.

The certainty of evidence rating ³⁴ reflected either the extent of available literature supporting the recommendation or the assessment that additional searches would be redundant based on Good Practice Statements from the Topic Guideline Creation Panel and Community Working Groups. Initial certainty assessments are derived from a conventional evidence hierarchy, where meta‐analyses of randomized controlled trials (RCTs) receive the highest rating, followed by individual clinical trials, quasi‐ or non‐randomized trials, observational studies, and expert opinion. Confidence in the estimated impact of an intervention is reduced by factors such as bias risk, inconsistency, indirectness, and publication bias, while it is increased by large effect sizes. Certainty ratings are: (1) High (additional research is very unlikely to alter confidence in the effect estimate); (2) Moderate (additional research is likely to significantly affect confidence in the effect estimate and may alter the estimate); (3) Low (additional research is very likely to significantly impact confidence in the effect estimate and is likely to change the estimate); (4) Very low (the effect estimate is highly uncertain). The final certainty ratings reflected the estimated intervention effect as reported in the literature, considering biases and limitations identified by the Topic Guideline Creation Panel.

2.6. Choice of recommendations

Topic Guideline Creation Panel members reached a consensus on the essential recommendations, guided by GRADE principles on the quality and certainty of the evidence and informed by rapid and grey literature reviews conducted by the Evidence Synthesis and Review Team, as well as input from working groups and partners. While no formal Delphi process was used, decisions were made collectively by drawing on firsthand experiences as family physicians, dementia specialists, PWD, care partners, and allied health professionals. Recommendations were presented to working groups. Feedback was obtained and discussed in subsequent meetings of the Topic Guideline Creation Panel for revision as appropriate in an iterative process until final recommendations were confirmed.

2.6.1. Generation of KTE materials

A priori project goals were also to generate quality materials to support implementation of the guidelines. To provide multi‐format, broad‐reaching KTE materials, the extensive educational experience of ASC staff and committee members was leveraged. Materials were informed by previously successful KTE campaigns and partnerships with the Canadian College of Family Physicians.

3. RESULTS

3.1. Literature review

Four key themes emerged from the rapid review: (1) setting up appointments (emphasizing preparation and sensitivity); (2) appointment content (focusing on clear communication and resource provision); (3) overall approach (highlighting the importance of empathy and person‐centered care); and (4) cultural competence (stressing the need for tailored strategies to address diverse patient and caregiver needs). (Table 1). The review also identified critical gaps, particularly in guidance relevant to Black and Chinese populations, reinforcing the need for culturally responsive approaches.

TABLE 1.

CLEAR guidelines on disclosing and communicating a diagnosis of dementia using GRADE methods to assess the strength of a recommendation and the certainty of the evidence of a recommendation.

Recommendation		Strength of recommendation	Certainty of evidence 20
Phase 1 of the disclosure process: overall approach
1. Engage holistic approaches
1.1 Authentic partnerships approach	This approach takes into account the voices and values of everyone involved in the care process, including the patient, care partners, and health care providers. By using this method, all parties collaborate throughout the care and decision‐making processes. Key elements of authentic partnerships include mutual respect, cooperative relationships, and an emphasis on the process. This approach can also be combined with other holistic care methods.	Strong	Low
1.2 Client‐centered approach	This approach emphasizes building rapport with the patient and their care partner, exploring their perspectives, and balancing and addressing their needs and preferences. It is most effective in the early stages of relationship building between the healthcare provider, patient, and care partner. However, client‐centered approaches can be limiting if the patient is unable or unwilling to include a care partner in the disclosure process. A relational approach can address this by considering other relationships beyond the patient‐care partner dyad, such as those with a social worker or nurse practitioner	Strong	Low
1.3 Relational approach	This approach emphasizes connection, collaboration, and the dynamics among everyone involved in the care process, including patients, care partners, health care providers, and allied health professionals. It also considers relationships beyond people, such as personal values, culture, and the environment where care takes place. In a relational approach, care outcomes are improved by building authentic relationships among all participants, focusing on connection, interdependence, collectivity, and collaboration. While this approach can be used at any stage of the care process, it truly takes shape as relationships and trust develop.	Strong	Low
Culturally inclusive considerations	Due to the heightened stigma of dementia experienced in ethnic and racial communities, the health care provider should be aware that multiple appointments may be needed to establish a level of acceptance with the patient and/or care partner about the diagnosis. There are times when a one‐on‐one conversation may be desired by the patient or care partner. The health care provider should engage patients and care partners in decisions regarding who is present, and for which appointments.	Not applicable	Not applicable
2. Instill hope
2.1 Focus	Ensure to focus on the patient's strengths, competencies, and abilities. Encourage the patient to remain positive and hopeful despite the challenges.	Strong	Moderate
2.2 Emphasize	Ensure to discuss healthy behaviors, how to maintain or enhance wellbeing, as well as available support options and resources (e.g., informational resources, community‐based supports, local Alzheimer Society).	Strong	Moderate
2.3 Care partners	Encourage care partners to remain positive and hopeful despite the challenges. Explain the likely prognosis and set expectations regarding dementia progression and changes to daily living. Provide information on resources such as local support groups and respite options to assist with coping with and adjusting to their new role.	Strong	Moderate
Culturally inclusive considerations	Culturally relevant education around dementia is lacking. Culturally competent education and resources regarding the diagnosis should be provided to assist with acceptance and to provide support. Hope often connects to spirituality; therefore, it is pivotal to acknowledge any deep spiritualties the patient has and integrate them into the diagnosis disclosure process. The health care provider may need to address the care partner's guilt for not noticing or acting sooner on declining cognition in the patient. It is encouraged that the health care provider or allied health professional provide examples using resources to the patients and their care partners on how other people living with dementia are living well.	Not applicable	Not applicable
Phase 2 of the disclosure process: preparing for the initial meeting
3. Ask about the care partner's presence
3.1 Suggested attendees	It is encouraged that a care partner or care partners are present through the disclosure process.	Strong	Low
3.2 Identify the care partner(s)	The patient should be provided the opportunity prior to disclosure to identify who they would like their care partner to be. This individual could be a family member, spouse, friend, neighbor, community member, religious personnel, substitute decision‐maker, or power of attorney (POA). Caveat: Should the patient not have a care partner (or does not wish to have a carepartner present), it may be arranged that an allied health professional (e.g., social worker, nurse practitioner) is present. The health care provider should be mindful of care partner dynamics to determine if the inclusion of the supporting individual(s) is in the best interest of the patient (e.g., the care partner is negative or unsupportive). Based on this judgement, the health care provider may contact an allied health professional (e.g., social worker, nurse practitioner) to take the role of supporting the patient, or in some cases other relevant supports (e.g., the office of the public guardian and trustee).	Strong	Low
3.3 Obtaining permission	Once the supporting individual(s) have been identified, the health care provider should ask the patient if they would like to have the selected person(s) present throughout the initial disclosure and follow‐up appointments. The care partner(s) should not be present for this conversation. Caveat: The health care provider should use their professional judgement to decide whether there are any concerns about the decision‐making capacity of the patient, and to balance the benefits versus harms of including the care partner in the disclosure process, should permission from the patient not be an option.	Strong	Low
Culturally inclusive considerations	It is important to consider including a care partner. Due to the heightened stigma of dementia experienced in ethnic and racial communities, the presence of care partners has been identified as often being helpful for supporting the patient in processing and understanding the information provided throughout the disclosure process. The role stigma plays in the acceptance of a dementia diagnosis should be considered. Health care providers should be cognizant of family power dynamics and use their professional judgment to gauge the impact of including the family member(s) on the patient and their outcomes. The health care provider should consider the role of care partners in the stigmatization of the diagnosis. Efforts should be made to provide educational and informative materials to care partners about dementia to help challenge common misconceptions. Family members or friends may accompany the patient to their appointments. The health care provider should identify the primary care partner(s) amongst those who attend.	Not applicable	Not applicable
4. Identify the disclosing healthcare provider(s)
4.1 Disclosing the healthcare provider	The healthcare provider (or team, or specialist) who is involved in the assessment and making of the diagnosis should be the one(s) to disclose the diagnosis to the patient and care partner.	Conditional	Low
4.2 Family physician	If the diagnosis is made in the primary care office, the family physician ideally would be the one to disclose the diagnosis to the patient and care partner, as they will be making healthcare decisions with them. Training and support for the family physician should be available (e.g., online learning, integrations into residency training programs) to aid in the diagnosis and disclosure processes. Caveat: Recognizing healthcare system shortages across Canada, other healthcare practitioners (e.g., nurse practitioners) can serve in this role.	Conditional	Low
Culturally inclusive considerations	Due to the heightened stigma of dementia experienced in ethnic and racial communities, it is important for the patient and care partner to be able to speak to someone they trust. It is recommended that, to the extent possible, the time is taken to build a relationship with the patient and care partner prior to the disclosure process occurring. It is recommended that at the end of the initial disclosure appointment, the healthcare provider ensures the patient and care partner leave with a list of support team contacts (e.g., social worker, local Alzheimer Society, etc.). The disclosure process should occur in the language that is most comfortable to the patient and care partner. It is encouraged that the health care provider first determines patient or care partner language needs (e.g., different first language, vision, or hearing impairments), and ensure a professional interpreter is present if needed. It is essential that the patient and care partner can define in their own language what they understand from the communication of the dementia diagnosis.	Not applicable	Not applicable
5. The environment and appointment structure
5.1 Number of appointments	It is recommended that there is a minimum of two appointments for the disclosure process; the initial appointment where the diagnosis is communicated, preliminary information is provided, and the patient and care partner have time to ask questions, and a follow‐up appointment where more detailed information and time for patients and care partners to ask questions are provided (see Recommendation 4 Topics to Discuss for more information). Caveat: To ensure the patient and care partner feel supported in between initial and follow‐up appointments, it is encouraged that the health care provider share a list of support team contacts prior to them leaving the appointment (e.g., social worker, nurse practitioner, local Alzheimer Society).	Conditional	Not applicable
5.2 Length of initial appointment	The length of the initial appointment is largely dependent on the needs of each patient and care partner, and the clinical setting and structure. At minimum, the appointment should ideally be long enough to provide the diagnosis, address questions, provide information, correct misinformation, emphasize well‐being, and plan for next steps. Caveat: Healthcare resources within Canada, particularly the time of health care providers, are limited. Should the health care provider not be able to cover the essential topics identified above, they should reassure the patient and care partner that there will be sufficient time to address remaining information, care planning, and questions at a follow‐up, or series of follow‐up appointments. Follow‐up appointments should ideally be scheduled prior to the patient and care partner leaving their appointment, to help put their minds at ease.	Conditional	Not applicable
5.3 Length of follow‐up appointment(s)	The length of the follow‐up appointment(s) is largely dependent on the needs of each patient and care partner. The health care provider should determine how much time and information is requested by the patient and care partner, the length of time the health care provider can feasibly allot for each of the meetings, and then work with the patient and care partner to setup the necessary number of follow‐up appointments that will address the needs of all parties.	Conditional	Not applicable
Culturally inclusive considerations	Prior to the initial appointment, health care providers should identify the language preferences of patients and care partners. The disclosure process should occur in the language that is most comfortable to the patient and care partner. In these instances, a professional interpreter or interpretation tool(s) should be arranged ahead of time, and more time should be allotted for the appointments. There are some instances that may prevent either the patient, care partner, or family member from attending the appointments in person. Support from an allied health professional (e.g., social worker, nurse practitioner) should be provided to ensure that a videoconferencing option is available and accessible to those who need it. The health care provider should be available for a series of appointments to make sure sufficient information has been provided to address questions or concerns, and to ensure the patient, care partner, and family feel comfortable with the diagnosis. Where relevant, it is encouraged that the health care provider schedule disclosure appointments at a time when they do not feel as rushed (e.g., end of day). Disclosure appointments should ideally be held in a room with a closed door to promote privacy and help build a sense of trust.	Not applicable	Not applicable
Phase 3 of the disclosure process: meeting content
6. Communication technique and terminology
6.1 Identifying language needs	The health care provider should first determine the patient or care partner's language needs (e.g., different first language, vision or hearing impairments), and ensure a professional interpreter is present if needed. It is essential that the patient and care partner can define in their own language what they understand from the communication of the dementia diagnosis. Caveat: If language needs are identified, the health care provider should ideally use a teach‐back method (i.e., asking patients to repeat information in their own words) to ensure patient and care partner comprehension.	Conditional	Not applicable
6.2 Using direct language	It is encouraged that direct language be used when discussing dementia (e.g., naming dementia or Alzheimer's disease) to reduce uncertainty around the diagnosis.	Conditional	Not applicable
6.3 Clear communication	It is important to define dementia to patients and care partners and to explain how it differs from memory problems and cognitive impairment.	Conditional	Not applicable
6.4 Alternate modes of communication	The use of visual aids and written information provided in the patient's first language is encouraged.	Conditional	Not applicable
Culturally inclusive considerations	The health care provider should use culturally relevant terms, as “dementia” is understood differently or not recognized in some cultures. For example, the term “dementia” is highly stigmatized in many cultures. For this reason, alternative terms that the patient and care partner are more comfortable with should be explored (e.g., memory changes, brain changes, neurocognitive disorder, etc.). Contextual information is helpful to support the patient and care partner to better understand the diagnosis and its implications. Examples of contextual information include, but are not limited to, explaining a specific diagnosis beyond the umbrella term “dementia”, social and structural determinants of health, as well as culturally relevant information such as the inequitable impact of dementia on diverse communities and the lack of system‐level awareness and culturally relevant supports. Ensuring the diagnosis is provided in a language most comfortable to the patient and care partner is one way to address avoidable inequities in the care process. To uphold clear and direct communication, where possible, the health care provider should ideally provide a specific diagnosis beyond “dementia” (e.g., Alzheimer's disease, frontal temporal dementia, etc.). It is encouraged that the health care provider takes the time to educate the patient and the care partner on what the diagnosis means to help them through the process of acceptance. Health care providers should be aware that some patients may experience anosognosia, whereby they are unaware of their neurological condition. In such cases, it is encouraged that the health care provider engages the care partner where possible, utilize holistic approaches (See Recommendation 1: Engage Holistic Approaches), be attentive to nonverbal cues, and provide emotional support where needed.	Not applicable	Not applicable
7. Topics to discuss
7.1 Suggested steps to the disclosure process	1) Elicit patient and care partner orientation 2) Elicit perspectives on symptoms 3) Present test results 4) Provide diagnosis 5) Respond to reactions 6) Discuss treatment, support options, and relevant safety concerns 7) Provide a sense of hope and discuss how to enhance well‐being and encourage healthy behaviors 8) Provide community resources for support (e.g., personal, financial, legal affairs). 9) Provide time for questions and set up a follow‐up appointment	Strong	Moderate
7.2 Topics to discuss at the initial follow‐up appointments	The initial meeting should include the exploration of the patient's and care partner's understanding of dementia. Additionally, information on etiology, type, prognosis, and available resources to support the patient and/or care partner should be provided. The follow‐up appointment(s) should be used to provide more in‐depth information about the identified topics, to discuss items of importance to the patients and care partner, as well as to allow for more sufficient time for questions and collaborative care planning. The details of the appointments should ideally be patient‐specific where possible, rather than providing solely generic information.	Strong	Moderate
7.3 Format of information	It is encouraged that helpful information (e.g., a summary of what was discussed during the appointment), and resources related to the diagnosis and supports available, should be provided in a minimum of verbal and written formats. Additional aids, such as access to informative videos, are recommended where available.	Strong	Moderate
Culturally inclusive considerations	Culturally competent education and resources regarding the diagnosis should be provided in multiple languages, to assist with acceptance and to provide support. Language support should be provided for individuals who speak a different language than the health care provider, or who have varying needs such as challenges with vision or hearing impairments (e.g., the use of a professional interpreter). Some family members may request receiving educational resources on the genetic implications of dementia. At the beginning of the disclosure appointment, it is encouraged that the health care provider opens a conversation with the patient and care partner to hear about, acknowledge, and respond to challenges that they may have experienced (e.g., misdiagnosis).	Not applicable	Not applicable
8. Emotional supports
8.1 Personal reflection	If needed, the health care provider might take a moment beforehand to prepare for a potentially difficult conversation.	Strong	Moderate
8.2 Explore and engage active listening	It is recommended that the health care provider use active listening, empathy, compassion, and understanding toward the patient, care partner, and themself. It is encouraged that the health care provider take the time to listen to the patient and care partner and gauge their understanding of dementia; and identify and address any knowledge gaps through the provision of resources and education during appointments.	Strong	Moderate
8.3 Respond	The health care provider should show empathy, compassion, and understanding, and be sensitive to the responses and needs of each patient and care partner.	Strong	Moderate
8.4 Helpful considerations	Dos: ‐Build rapport with the patient and care partner to build trust ‐Prepare yourself to have a difficult conversation ‐Actively listen ‐Show empathy, compassion, understanding, and sensitivity ‐Be patient and provide time for questions ‐Provide written materials or other visual aids (i.e., informative resources) Do nots: ‐Rush the appointment ‐Provide an overwhelming amount of information at one time ‐Ignore concerns or questions from either the patient or their care partner	Strong	Moderate
Culturally inclusive considerations	Utilizing materials which display an individual with a similar ethnic or cultural background can help with self‐identification, acceptance, and hope. Health care providers or allied health professionals should suggest the involvement of or referral to representatives who reflect the community of the individual being diagnosed to help recognize and address any biases that may arise (e.g., a member from the Alzheimer Society, a social worker, etc.). Emotional support should be provided to all parties involved (i.e., patient, care partner, family, etc.) Health care providers should be attentive to non‐verbal cues during appointments. Allied health professionals (e.g., social worker, nurse practitioner, case manager) are helpful for identifying resources that are available and supporting patient advocacy.	Not applicable	Not applicable

Abbreviations: CLEAR, Compassionate Language and Empathetic Approaches for Respectful Dementia Disclosure; GRADE, Grading of Recommendations, Assessment, Development, and Evaluations.

The systematic review also identified the SPIKES‐D tool (Setting, Perception, Invitation, Knowledge, Emotions, and Strategy/Summary). ²³ SPIKES is a didactic tool for delivering cancer‐related bad news, and modifications for dementia have been suggested. The six steps in SPIKES‐D are: (1) setting up the interview with the possible inclusion of a companion; (2) assessing patient perception; (3) obtaining patient invitation to receive a diagnosis; (4) providing test results and then the diagnosis; (5) using empathy in response to patient emotions; (6) providing a summary and strategy moving forward. However, the tool lacked real‐world evaluations, and cultural applicability was not articulated. Thus, we proceeded with the generation of guidance as per our plan.

An overarching message from the review was that a compassionate approach to communicating a dementia diagnosis has numerous benefits for both PWD and care partners. ³⁵ For PWD, compassionate communication can help reduce the fear, anxiety, and confusion often associated with receiving a dementia diagnosis. ¹⁴ Feeling understood and supported can provide significant emotional comfort. A compassionate approach often includes clear and empathetic explanations, helping the person better understand their condition and the changes they may experience. ¹⁶ Showing empathy and compassion builds trust, which is crucial for ensuring that patients feel safe and willing to share their concerns and symptoms openly. ¹⁶ Patients who feel supported are more likely to adhere to treatment plans and follow medical advice, which can help manage symptoms more effectively and improve overall quality of life. ³⁶ Additionally, compassionate communication can empower patients by involving them in decision‐making about their care, fostering a sense of autonomy and control over their health. ¹⁴

Compassionate communication is also relevant to care partners, providing emotional support, acknowledging challenges, and offering reassurance. ¹⁴ This approach can reduce feelings of isolation and stress. Receiving clear and empathetic explanations about the diagnosis, progression, and management of dementia helps care partners understand the condition better to prepare better for the future. Compassionate guidance helps care partners learn effective strategies for supporting and caring for their loved one, enhancing caregiving skills, and reducing the burden and/or stress associated with care. Compassionate communication also addresses the emotional and psychological needs of care partners, fostering better coping with the demands of caregiving and the emotional impact of the diagnosis. ¹⁴ HCPs showing compassion can strengthen the relationship between the care partner and PWD, leading to better cooperation and a more positive caregiving experience. ³⁷

Overall, compassionate communication contributes to a more holistic approach to care, addressing not only the medical but also the emotional, psychological, and social needs of both patients and care partners. ³⁸ The combined benefits of emotional support, improved understanding, and better caregiving skills can enhance quality of life for PWD and care partners. ³⁸ Moreover, compassionate communication fosters a supportive and understanding environment, which can lead to better long‐term outcomes in terms of mental health, well‐being, and disease management for patients and care partners. ¹⁴

Despite thorough attempts to identify literature on how Black and Chinese patients experience receiving a dementia diagnosis, or how providers communicate such diagnoses, no relevant studies were found. This absence highlights a significant gap, especially in culturally specific guidance for delivering dementia diagnoses. To address this gap, supplementary searches examined communication around other chronic illnesses in ethnoculturally diverse older adults. A South African study explored how providers navigate culturally sensitive communication when discussing cancer diagnoses, emphasizing the importance of clarity, reassurance, and correcting misconceptions, often with the help of visual aids and metaphors to enhance understanding. ³⁹ Among Chinese populations, some studies noted a preference for informing family members before the patient, which helped align care expectations but raised concerns about patient autonomy. ⁴⁰ , ⁴¹ Effective communication also involved addressing emotional responses and care planning needs.

Working with the Black and Chinese Community Working Groups also provided information relevant to dementia diagnosis disclosure. These insights included: (1) involving care partners during the process (to support processing and understanding the diagnosis and mitigating stigma); (2) identifying the main care partner, using the language most comfortable to the patient and care partner (with professional interpretation if necessary); (3) using culturally appropriate terminology (given the concept of dementia potentially being unfamiliar or differently understood in various cultural contexts); (4) providing culturally competent education and resources to support understanding and acceptance of the diagnosis (ideally reflecting patient ethnocultural background to foster self‐identification, acceptance, and hope); (5) offering contextual information to enhance the relevance and clarity of the disclosure (i.e., clarifying specific diagnoses beyond the general term “dementia,” explaining the social and structural determinants of health, and acknowledging the disproportionate impact of dementia on racialized communities).

3.2. Recommendations

Detailed recommendations from the CLEAR Guidelines on Disclosing and Communicating a Diagnosis of Dementia are presented in Appendix S4. This table also includes the GRADE assessment of strength and the certainty. Of note, these guidelines are recommended for people with a confirmed diagnosis of dementia, not mild cognitive impairment. The CLEAR Guidelines outline eight essential practices to enhance the communication process, divided into three phases, all with cultural considerations in mind: (1) overall approach; (2) preparation for the initial meeting; (3) the content of the meeting itself. Each step in the communication process should be addressed, though not necessarily within a single appointment, ensuring direct communication with the patient and active listening to their current and future needs.

The recommendations are: (1) Engage holistic approaches to facilitate shared decision making; (2) Instill hope in patient and care partner for living well despite challenges; (3) Ask the patient about the care partner's presence; (4) Identify the disclosing health‐care provider based on who makes the final assessment; (5) Create an environment and appointment structure that is private and patient‐centered; (6) Use appropriate and relevant communication techniques and terminology; (7) Explore topics to discuss, using the CLEAR communication toolkit; and (8) Provide emotional support to the patient and care partner throughout the appointment(s).

Recommendations are summarized in Figure 1, but a synopsis is as follows:

1. Engage holistic approaches: Use of holistic approaches to the disclosure process is encouraged, such as the Authentic Partnerships, Client‐Centered, and Relational Approaches. ⁴² These approaches highlight the importance of building trusting patient‐provider relationships and working collaboratively through care and shared decision‐making processes.

   1. Authentic partnerships emphasize genuine collaboration between patients, care partners, and healthcare providers, valuing mutual respect, shared power, and co‐creation of care strategies. ⁴² In the context of dementia care, practically, this means involving individuals with dementia and their families in all aspects of care planning and decision‐making. The client‐centered approach is rooted in respecting the values, preferences, and needs of the individual receiving care. ⁴³ This approach focuses on tailoring care to each unique context, supporting autonomy, and emphasizing listening to the person's voice to guide care decisions in ways that reflect their identity and dignity. The relational approach prioritizes the development and maintenance of meaningful, reciprocal relationships between healthcare providers and patients. It recognizes that care occurs within social and emotional contexts and focuses on empathy, trust, and ongoing dialogue to support well‐being and effective communication. ⁴⁴ These reciprocal relationships are especially crucial when navigating sensitive topics like dementia.

2. Instill hope: The overall tone of the disclosure process should be to instill hope in both patient and care partner(s).

3. Ask about care partner presence: While it is encouraged that a care partner be present through the disclosure process, the HCP should ask the patient to confirm and identify the individual(s).

4. Identify disclosing HCP: The HCP (or team, or specialist) involved in the assessment and making the diagnosis should be the one(s) to disclose the diagnosis to the patient and care partner.

5. Create a patient‐centered environment and appointment structure: If possible, the disclosure process should encompass a minimum of two appointments to allow sufficient time for patients and care partners to process the diagnosis and have questions and concerns addressed. These appointments should take place in a private, quiet setting and not be rushed.

6. Use appropriate and relevant communication techniques and terminology: Patient or care partner language needs should be determined, with the use of professional interpretation services, if needed (Table 2). Culturally relevant language regarding dementia should be used, informed by knowledge of the patient's culture.

7. Explore topics to discuss: Patient and care partner understandings of dementia should be determined, using patient‐specific details and language support when needed. Providing information on etiology, type, prognosis, and available support resources is encouraged.

8. Provide emotional support: Active listening, empathy, compassion, and understanding toward the patient and care partner are encouraged. The HCP/team should also be prepared for a potentially difficult conversation.

FIGURE 1.

Summary of CLEAR guidelines on disclosing and communicating a diagnosis of dementia. clear, Compassionate Language and Empathetic Approaches for Respectful Dementia Disclosure.

TABLE 2.

Examples of recommended questions to be used when communicating a dementia diagnosis.

Explaining dementia progress

“Dementia is a term which describes a set of symptoms which may include memory loss, changes in mood and behavior, and difficulties with thinking, vision, movement, problem solving and language. Dementia is a progressive condition, meaning it tends to change over time, but each individual's experience is unique. There is not a cure but there are treatments and support that can help maintain a fulfilling life.” “What more information about your condition or your test results would you like, if any?” “What is your understanding of your condition?” “How much information about what is likely to be ahead with your condition would you like from me?” “I would like to know what is important to you moving forward with your condition. How do you feel about this?”

Exploring values, concerns, and cultural considerations

“What are your most important goals if your health changes?” “What are your biggest fears and worries about the future with your condition?” “What gives you strength as you think about the future with your condition?” “What abilities are so critical to your life that you cannot imagine living without them?” “How much do your care partner(s) know about your priorities and wishes?”(Patient alone) “Do you have a care partner(s) to help support you? Do you want to share this diagnosis with your care partner(s)? Would you like another appointment with me to share this information or would you like to share the information first?” “ Is there anything you would like me to understand about your culture or customs to help the team support you better?” “ How do we as a team help to support you?”

4. DISCUSSION

The goal of the CLEAR guidelines is to improve access to and foster use of high‐quality dementia guidance focused on person‐centered communication, with a particular emphasis on Black and Chinese Canadian communities, two of the largest ethnocultural minority groups in Canada. ⁴⁵ During working group meetings, members shared experiences and offered feedback on the Topic Guideline Creation Panel recommendations, emphasizing the unique needs of their communities regarding the disclosure and communication of a dementia diagnosis. These guidelines address the needs for culturally sensitive dementia care, practical and accessible tools for under‐resourced family physicians. ⁴⁶ It also created a sustainable framework for national dementia guideline development that includes ethnoculturally diverse populations. These needs are increasingly important as dementia prevalence continues to rise. ⁴⁷ Developed in response to a call for evidence‐based dementia guidance from the Public Health Agency of Canada, these guidelines were intended to complement the Government of Canada's National Dementia Strategy. ⁴⁸

CLEAR guidelines align with other recommendations on dementia diagnosis disclosure despite different methodologies or focus. The American Academy of Neurology (AAN) recently published guidance for communicating a dementia diagnosis. ²⁴ Rather than the GIN framework and primary care focus of the Canadian guidelines, the AAN guidelines implemented a modified Delphi process in accordance with the AAN approach to recommendation development, with applicability across all clinical settings. Instead of having a priori representation of patients, caregivers, and clinicians from Black and Chinese communities, amongst others, diversity was represented at the clinician level. Nonetheless, the best practice statements generated are reassuringly similar: clinicians must (1) show compassion and empathy when delivering a dementia diagnosis; (2) ask about diagnosis preferences; (3) instill realistic hope; (4) provide practical strategies; (5) provide education and connections to resources; (6) connect caregivers to resources; and (7) provide written summaries. Both guidance documents are practical and complementary, with the recommendations for demonstrating compassion and empathy and instilling hope being essentially identical. Attendant with the methodological differences and slightly different focus, the Canadian guidelines were informed a priori by focus groups of Black and Chinese Canadians, as evidenced by the recommendations to explore the meaning of the term “dementia” in different cultures and to ensure translation services are available. Further, knowledge translation to primary care was an essential goal of the Canadian guidelines, resulting in the CLEAR toolkit, developed in conjunction with the College of Family Physicians.

The CLEAR Communication Toolkit (see Appendix S5) is a script that provides health care providers with prompts for: setting up the conversation, disclosing the diagnosis, engaging in genuine conversation about what the diagnosis means for the patient and their care partner(s), and transitioning from diagnosis to continued care and support. Throughout the appointment(s), it is important to communicate with the patient in front of you and actively listen to what they need from you now and in the future. Each step in the communication process should be covered, but each step does not need to occur in a single appointment. These questions were adapted from the Serious Illness Conversation Guide, ⁴⁹ developed by members of all guideline development teams, and informed by the guideline development process and output. Effective communication between HCPs, PWD, and care partners about a dementia diagnosis can significantly enhance awareness of available supports and resources. ⁵⁰ This, in turn, can reduce family caregiver anxiety and improve preparedness for those affected. ⁵¹

4.1. Implementation

The guidelines are being implemented through a multi‐faceted approach to ensure broad accessibility, utilizing various techniques across different platforms and audiences. The different modalities include educational courses, published articles, toolkits, and infographics, each tailored to meet the needs of specific stakeholders. KTE implementation comprises several components.

1. Physician course: A Learning Management System continuing medical education accredited course has been established through the ASC, providing physicians with essential skills and knowledge to implement the guidelines effectively. This course is accessible via the ASC website, a primary resource for dementia information in Canada, and is also available through the GIN libraries.

2. Lay press article: An article on the health information website Healthy Debate has been published, ³⁷ which highlights effective communication strategies for dementia diagnoses. The aim was to raise awareness among the public and healthcare professionals about the guidelines and their application.

3. HCP toolkit: The CLEAR Communication Toolkit, designed to facilitate the implementation of the CLEAR Guidelines, is being evaluated nationwide with the support of the College of Family Physicians of Canada. This toolkit, adapted from the Serious Illness Conversation Guide and developed through a community‐engaged process, aids HCPs in compassionate and empathetic dementia disclosure.

4. Patient‐facing toolkit: The CLEAR Communication Toolkit for People Expecting a Dementia Diagnosis supports individuals showing signs of dementia as they prepare for diagnostic appointments. This toolkit, developed by researchers, topic experts, and PWD, ensures that patients are informed and prepared, aligning with guideline recommendations.

5. Infographic: An infographic summarizing the guidelines has been disseminated to HCPs and allied health professionals, providing a quick reference tool for use in clinical settings (Figure 1).

6. Newsletter: The CLEAR Guidelines and Toolkit were shared in the Foundation for Medical Practice Education (FMPE) August 2024 newsletter, Insights & Impact, ⁵² which reaches approximately 8000 Canadian family physicians. The Newsletter: The Guidelines will also be referenced in the upcoming FMPE module, “Dementia: Along the Trajectory.”

7. Short films: We collaborated with a professional videography team to film interviews with PWD and their caregivers from the Chinese and Black communities. These interviews focused on care journeys, sources of strength, and experiences co‐producing the guidelines. We created short clips to highlight their unique stories, which are available on the ASC website (www.alzheimer.ca).

8. Medical Conference Workshops: Presentations, keynotes, and practical workshops have been a source of dissemination. Members of the team have attended clinical symposiums, continuing medical education events, and family medicine forums to provide updates and share the CLEAR guideline and toolkit.

All resources are available in both French and English to maximize their reach across Canada, while the infographic has been translated into 10 additional languages. Work is underway with national knowledge mobilization hubs, who work in partnership with provincial family physician associations to disseminate the toolkit further and explore the ability to embed it into future training material for sustainability. Plans are also underway to expand cultural competency to meet the needs of Indigenous communities and South Asian communities.

4.2. Strengths

A significant strength of the CLEAR Guidelines lies in adherence to the GRADE framework throughout development. GRADE ensures transparent, consistent, and evidence‐based guideline production, enhancing reliability and applicability across different healthcare contexts. ³³ Another strength is the linked KTE effort, which includes educational materials, a dedicated toolkit, and collaboration with organizations like the FMPE, via a multidisciplinary approach and emphasis on reflective practice further enhance the integration of new knowledge into daily clinical routines. The FMPE evidence‐based curriculum and interactive teaching methods (like simulations and case studies) support learners in applying guideline recommendations effectively in clinical practice. Incorporating the CLEAR Guidelines into the FMPE dementia learning module represents commitment to continuous professional development and quality improvement in healthcare delivery. This integrated approach facilitates ongoing learning and application of evidence‐based practices, ensuring optimal care for patients affected by dementia.

4.3. Knowledge gaps and limitations

Timelines and funding limitations resulted in formal working groups for Black and Chinese communities only, somewhat mitigated by diverse representation throughout all the remaining groups. Although we did incorporate global culturally sensitive principles, large ethnocultural groups in Canada, like the South Asian community, were not formally included. Further, research on the experiences of dementia disclosure among populations facing social and structural inequities, such as Indigenous and other marginalized communities, remains sparse and requires further study. With over 100 language groups in Canada, guidance should be available in numerous languages, in addition to English and French, the two official Canadian languages. The CLEAR guidelines support HCP communication with persons with late‐onset dementia, but evidence specific to individuals with young‐onset dementia is limited, with insufficient guidance on the most effective approaches to communicate with this group. This remains an unmet need. Moreover, implementing the guidelines across healthcare settings presents challenges due to varying resources and training levels. To address this, the guidelines prioritize simplicity and accessibility, accommodating diverse HCPs and cultural backgrounds.

CONFLICTS OF INTEREST STATEMENT

The authors have no conflicts of interest. Author disclosures are available in the supporting information.

CONSENT STATEMENT

Informed consent was not required for this study, as it did not involve human participants.

Supporting information

Supporting Information

Supporting Information

Ismail Z, Sivananthan S, Main S, et al. Culturally sensitive CLEAR guidelines on disclosing and communicating a diagnosis of dementia. Alzheimer's Dement. 2025;21:e70744. 10.1002/alz.70744