Phase 1: Overall approach for disclosing a dementia diagnosis
The National Dementia Guidelines for disclosing a diagnosis recommend that health-care workers begin by engaging in holistic approaches and instilling hope.
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 1, which includes recommendations 1 and 2, is below.
To download a communication toolkit, a copy of the full guidelines and grade evidence table, and a mini-poster, visit the guidelines homepage.
Recommendation 1: Engage holistic approaches
[GRADE Rating: Strong Recommendation, Certainty of Evidence: Low]
1.1 Authentic Partnerships Approach (see reference Dupuis et al., 2012): This approach considers the voices and values of all individuals in the care process (i.e., patient, care partners, and health care providers). Using this approach, all parties work together through care and decision-making processes. Cornerstones of authentic partnerships include a genuine regard for self and others, synergistic relationships, and a focus on the process. This approach can be used in conjunction with other holistic approaches to care.
1.2 Client-Centred Approach (see reference Restall et al., 2003): In this approach, the focus is on building rapport with the patient and their care partner, exploring their perspectives, as well as balancing and addressing the needs and preferences of each. This approach is best used in the early stages of relationship building between the health care provider, patient, and care partner.
1.2.1 Caveat: Client-centred approaches can be limiting if the patient is unable or does not wish to include a care partner in the disclosure process. A relational approach can address this concern by considering other relationships beyond the patient-care partner dyad (e.g., with a Social Worker, Nurse Practitioner).
1.3 Relational Approach (see reference Younas, 2020): This approach focuses on connection, collaboration, and dynamics between everyone involved in the care process (patients, care partners, health care providers, allied health professionals, etc.), as well as the relationships that exist with more than just people (e.g., personal values, culture, the space within which the care is happening, etc.). In a relational approach, outcomes of care are enhanced by building authentic relationships between all involved in the care process, and focuses on connection, interdependence, collectivity, and collaboration. This approach can be used at any stage of the care process, but really takes form as relationships and trust build.
A note about terminology: Health-care workers and people living with dementia can sometimes differ on use of the term “patient.” While many health-care workers view “patient” as a term of respect, some people living with dementia experience “patient” as a “less-than” label. Be aware that some people living with dementia prefer to be referred to as “client” or “person” instead. Some people living with dementia and other conditions prefer.
Culturally inclusive considerations for this recommendation
- Due to the heightened stigma of dementia experienced in ethnic 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.
Recommendation 2: Instill hope
[GRADE Rating: Strong Recommendation, Certainty of Evidence: Moderate]
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.
2.2 Emphasize: Ensure to discuss healthy behaviours, how to maintain or enhance wellbeing, as well as available support options and resources (e.g., informational resources, community-based supports, local Alzheimer Society).
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.
Culturally inclusive considerations for this recommendation
- 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 spiritual ties 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.