Phase 2: Preparing for the initial diagnosis-disclosure meeting

The National Dementia Guidelines for Disclosing and Communicating a Diagnosis of Dementia offer eight recommendations for physicians, specialists and nurse practitioners to encourage more open conversations with patients.

These recommendations are divided up into three phases. Phase 2 is featured on this page; it includes Recommendations 3, 4 and 5.

To download a communication toolkit, a copy of the full guidelines and grade evidence table, and a mini-poster, visit the guidelines homepage.

Recommendation 3: Ask about care partner presence

[GRADE Rating: Strong recommendation, certainty of evidence: Low]

3.1 Suggested attendees: It is encouraged that a care partner or care partners are present through the disclosure process.

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, neighbour, community member, religious personnel, substitute decision-maker, or power of attorney (POA).

3.2.1 Caveat: Should the patient not have a care partner (or does not wish to have a care partner present), it may be arranged that an allied health professional (e.g., Social Worker, Nurse Practitioner) is present.

3.2.2 Caveat: 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).

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.

3.3.1 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.

Culturally inclusive considerations for this recommendation

It is important to consider including a care partner. Due to the heightened stigma of dementia experienced in ethnic 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.

Recommendation 4: Identify the disclosing health care provider(s)

[GRADE rating: Conditional recommendation, certainty of evidence: Low]

4.1 Disclosing Health Care Provider: The health care 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.

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.

4.2.1 Caveat: Recognizing health care system shortages across Canada, other health care practitioners (e.g., Nurse Practitioner) can serve in this role.

Culturally inclusive considerations for this recommendation

Due to the heightened stigma of dementia experienced in ethnic 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 health care provider ensures the patient and care partner leaves 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 determine 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.

Recommendation 5: The environment and appointment structure

[GRADE rating: Conditional recommendation, Certainty of evidence: Not applicable]

5.1 Number of Appointments: It is recommended that there are 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).

5.1.1 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).

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.

5.2.1 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.

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.

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 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.