About the National Dementia Guidelines for disclosing a diagnosis

Overview

Purpose of the Guideline

According to the 2021 World Alzheimer Report, more than 50% of persons living with dementia and their care partners reported dissatisfaction with the disclosure process, including not receiving adequate information at the time of their diagnosis (Alzheimer’s Disease International, 2021). Concerns were also raised about the manner and the content of communication, such as the specific type of dementia (e.g., Alzheimer’s disease, vascular dementia, etc.), what to expect with the progression of dementia, and what comprises post-diagnostic care (Foley et al., 2017). The process of disclosing a diagnosis of dementia has been identified to be one of the most challenging areas for family physicians, due to concerns about providing an accurate diagnosis, communicating the diagnosis, and supporting the person living with dementia and care partner post-diagnosis (Alzheimer’s Disease International, 2019). Having the diagnosis disclosed can support timely awareness of available supports and resources for persons living with dementia and care partners, thus resulting in reduced anxiety and increased preparedness (de Vugt & Verhey, 2013).

With Canada’s demographic profile including a range of ethnic racial populations, health equity considerations are essential to include in the development and implementation of healthcare supports, services, and initiatives, to effectively address the needs of all communities. Ethnic racial communities experience heightened rates of stigma and racism, which contribute to health and societal inequities.

This Guideline has been created to provide culturally competent best practices for health care providers and allied health professionals to support them in disclosing and communicating a diagnosis of dementia. The aim is to improve the disclosure experience for persons living with dementia, care partners, and health care providers. Disclosing and Communicating a Diagnosis of Dementia, a cultural focus on the needs of two of the most racialized communities in Canada were included; the Black Community (4.3%) and the Chinese Community (4.7%) (Statistics Canada, 2021). We recognize this as a starting point, with the intention of expanding to other communities and topic areas in future iterations.

Target users

The primary target users for the Guideline are family physicians although the scope is applicable to health care providers and allied health professionals who disclose and communicate a diagnosis of dementia, including but not limited to neurologists, geriatricians, geriatric psychiatrists, nurse practitioners, and social workers. This Guideline can be used to support providers through the disclosure process, including through decision-making processes and engaging holistic approaches.

Development process

A combination of literature reviews and community consultation activities were conducted for the purpose of developing this Guideline. The literature review was aimed at understanding current global practice in the disclosure of a dementia diagnosis for the general population, as well as for members of Black and Chinese communities. The Topic Guideline Creation Panel (comprised of persons living with dementia, care partners, physicians, and allied health professionals) led the development process by corroborating findings and providing detailed feedback on recommendations. Simultaneously throughout this process, the Black and Chinese Community Working Groups were providing cultural considerations and insights on the dementia disclosure process.

The Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) framework was used to develop and present summaries of evidence collected in the literature review and by experts in the abovementioned groups. The GRADE framework allowed for a systematic approach to the development of this Guideline and can be found in Appendix D. It should be noted that the Certainty of Evidence rating reflects either a) the extent of available evidence in the literature to support the recommendation, or b) that our team felt the resources required to do an additional search on the specific topic would be redundant based on Good Practice Statements made by the Topic Guideline Creation Panel and two Community Working Groups. For example, if a recommendation has a “low” certainty of evidence, it could mean that our search may not have captured the full scope of that topic, or that more research is needed.

What the Guideline does not capture

The Guideline does not provide specific recommendations for the disclosure of young onset dementia or mild cognitive impairment. Future work will be aimed at developing recommendations for young onset dementia and mild cognitive impairment.

What you need to know about reviewing the guidelines

How these recommendations came to be

These recommendations were drafted through collaboration and discussions between members of the Topic Guideline Creation Panel (TGCP) and informed by rapid and grey literature reviews conducted by the Evidence Synthesis and Review Team. Through this process, members of the TGCP came to consensus about which recommendations they felt were important to include and drew on their firsthand experiences as either a physician, person living with dementia, care partner, or allied health professional to lead the development of these Guidelines.

How culturally inclusive considerations were formed

The culturally inclusive considerations throughout this document were drafted through collaboration and discussions between members of both the Black Community Working Group and the Chinese Community Working Group. These focus groups were comprised of people living with dementia, care partners, allied health professionals and physicians, and were led by a facilitator who is representative of each aforementioned community. Through a series of meetings, group members were able to share their experiences as a self-identifying member of their respective community to provide feedback on the recommendations suggested by the TGCP, and drew attention to the specific needs of their community with regards to the process of disclosing and communicating a diagnosis of dementia. Although these considerations were suggested by the two Community Working Groups, it was recognized that many of the considerations were also applicable to the population more broadly. These ideas are captured after each recommendation in a section titled Culturally Inclusive Considerations.

The review process

This Guideline has undergone a rigorous review process, whereby a total of seven teams provided feedback on the initial draft. These review groups included the Alzheimer Society of Canada team, Steering Committee, Topic Guideline Creation Panel, Expert Advisory Group, the Health Association of African Canadians, and the Yee Hong Centre for Geriatric Care. The seventh group did not wish to be named, as they were unable to review the whole document in its entirety within the allotted review time.

Disclaimer

All who contributed to the development of the Guidelines recognize and understand the challenges of the current Canadian healthcare system including ongoing staffing shortages leading many Canadians to go without a regular provider; difficulty accessing family health services especially in rural, remote and underserved areas; and an unprecedented level of burnout, absences, and turnover among staff in clinical settings throughout the country (Canadian Medical Association, 2022; Government of Canada, 2023). As such, it is acknowledged that there will be instances where health care providers may not have the capacity or resources to follow each of the recommendations outlined in the Guideline below. These Guidelines were developed to encourage a culture shift towards the use of best practices to improve the healthcare experience of persons living with dementia, care partners and health care providers through the process of disclosing and communicating a diagnosis of dementia.

Members of our project teams acknowledge that the word “disclosure” has negative connotations. As such, it is recommended that as health care providers continue to share a diagnosis of dementia, the process should be viewed as more of an open communication than a disclosure. With this it is recommended that there is a shift away from using the words “disclose,” “disclosure,” and “disclosing,” towards using “communicate,” “communication,” “communicating.” As this is a new paradigm shift, we have continued to use the terms interchangeably throughout this document as a starting point in this transition away from “disclosure."

We also want to acknowledge that the word ‘patient’ has been used throughout this document, however, this is not how all individuals would like to be identified. Health care providers and people living with dementia can sometimes differ on the use of the term “patient.” While many health care providers view “patient” as a term of respect, some people living with dementia experience “patient” as a “less-than” label. We would like to make readers aware that some people living with dementia prefer to be referred to as “client” or “person” instead.

Lastly, although these Guidelines are representative of the general population, and the cultural considerations appear independently, it is imperative that cultural awareness and competency are implemented throughout all of the recommendations. Using an inclusive approach will support health care providers to capture and support the lived experiences of all people living with dementia and their care partners.

For definitions of terms used in the National Dementia Guidelines, please refer to the glossary.