Phase 3: Meeting content for the disclosure process

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 3 is featured on this page. It includes Recommendations 6, 7 and 8.

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

Recommendation 6: Communication technique and terminology

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

6.1 Identifying language needs: The health care provider should 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.

6.1.1 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.

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.

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.

6.4 Alternate modes of communication: The use of visual aids and written information provided in the patient’s first language is encouraged.

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 take 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 non- verbal cues, and provide emotional support where needed.

Recommendation 7: Topics to discuss

[GRADE rating: Strong recommendation, Certainty of evidence: Moderate]

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 behaviours
8. Provide community resources for support (e.g., personal, financial, legal affairs).
9. Provide time for questions and set up a follow-up appointment

7.2 Topics to discuss at the initial and 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.

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.

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).

Recommendation 8: Emotional supports

[GRADE Rating: Strong recommendation, Certainty of evidence: Moderate]

8.1 Personal reflection: If needed, the health care provider might take a moment beforehand to prepare for a potentially difficult conversation.

8.2 Explore and engage active listening: It is recommended that the health care provider use active listening, empathy, compassion, and understanding towards 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.

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.

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)

Don'ts

•  Rush the appointment
•  Provide an overwhelming amount of information at one time
•  Ignore concerns or questions from either the patient or their care partner

Culturally inclusive considerations

• Utilizing materials which display an individual with 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.