Glossary for National Dementia Guidelines on disclosing a diagnosis

The Topic Guidelines Creation Panel was responsible for reviewing the literature, assessing the evidence, and leading the guideline development process. The TGCP was comprised of persons living with dementia, care partners, physicians, specialists, and allied health professionals.

The Chinese Community Working Group provided cultural insights throughout the development and finalization processes for the guidelines and associated Knowledge, Translation and Exchange materials. The group consisted of a professional facilitator, persons living with dementia, care partners, a family physician, allied health professional, and community member expert, all from the Chinese community.

The Black Community Working Group provided cultural insights throughout the development and finalization processes for the guidelines and associated Knowledge, Translation and Exchange materials. The group consisted of a professional facilitator, persons living with dementia, care partners, a family physician, allied health professional, and community member expert, all from the Black community.

The Physician Liaisons (2) were members of both the Topic Guideline Creation Panel as well as their respective Community Group. They were responsible for providing a physician perspective during Community Working Group meetings, keeping the Community Working Groups informed in regard to conversations and decisions made during the Topic Guideline Creation Panel, and contributing their expertise (both medical and cultural) to Topic Guideline Creation Panel meetings.

The Physician Liaison Support individual was responsible for supporting the Physician Liaisons (2) in their appointment of sitting on both the Topic Guideline Creation Panel as well as their respective Community Working Group (BCWG/CCWG). They provided detailed notes and presented a brief summary of items discussed at previous meetings. The Physician Liaison Support served as a primary point of support for physicians throughout the duration of the National Dementia Guidelines project.

The Alzheimer Society of Canada Program Management Team was responsible for planning and overseeing the successful delivery of the program’s outputs and products. This team was inclusive of research and knowledge translation and exchange experts, who have extensive expertise in the dementia space.

The Steering Committee was the decision-making and advisory body that was part of management of operations of the National Dementia Clinical Guidelines Program. The Committee had a significant stake in how each guideline is managed, and was comprised of research experts, family physicians, specialists, care partners, and persons living with dementia.

The Evidence Synthesis and Review Working Group followed documented methods for its reviews of the topics specified by the Steering Committee and followed the methods of the Grading of Recommendations Assessment, Development and Evaluation (GRADE) in assessing the evidence. This group conducted the systematic review(s) that were used as the basis for the Steering Committee’s recommendations. This group consisted of librarians, research assistants, and scientific consultants.

The Expert Advisory Group led the dissemination process and provided oversight to the development of the recommendations. This group was comprised of family physicians, specialists, and allied health professionals.

HAAC is a non-profit health association based in Dartmouth, Nova Scotia. Established in 2000, their mandate is to inform health issues concerning African Canadians, specifically in Nova Scotia and more broadly across Canada. Their mandate encompasses education, research, health-care delivery, and policy reform. The HAAC Vision is: Thriving, healthy African Canadian Communities in Nova Scotia. The Mission is: to promote and improve the health of African Canadians in Nova Scotia through community engagement, education, policy recommendations, partnerships, and research participation, with culturally competent application.

Yee Hong is a reputable not-for-profit senior care organization that delivers a continuum of high-quality, person-centred, culturally appropriate services to Chinese and other Asian older adults living in different settings.

In the first recommendation, caregiver was changed to care partner to reflect feedback from the Topic Guideline Creation Panel. For the purposes of this recommendation, a care partner reflected a person who is selected by the person living with dementia to support them through the care process. This included but was not limited to a family member, spouse, friend, neighbour, substitute decision-maker, or power of attorney (POA). If the person living with dementia was unable to identify this person, a care partner reflected the legally appointed individual.

Someone who has received an official diagnosis of Alzheimer’s disease or other dementia.

Focuses on the needs of the individual and puts the person at the center of care. Health and social care professionals work collaboratively with the individual to make informed decisions about their own health and health care. Care and services will be adapted to meet the expectations and preferences of the individual.

Awareness of others’ cultural beliefs and values and the ability to honor cultures that differ from your own.

A culturally competent approach that fosters respectful and compassionate care in response to clients, patients and care partner needs, values, beliefs and preferences.

This principle honours individual differences and encourages providers to emphasize personhood and to get to know patients and care partners while also believing in their ability to grow, develop and learn.

Focuses on connection, interdependence, collectivity and collaboration. Where a person-centred approach focuses on the individual, a relational caring approach focuses on everyone involved in the care process (person with dementia, care partner, health care professional, allied health professional), as well as other factors such as the environment (space within which the care is provided). In a relational approach, outcomes of care are enhanced by building high-quality relationships between all involved in the care process.

For the purposes of the guideline document, we used the term ‘health care provider’ to describe a mixture of professions (i.e., primary care physicians, specialists, Nurse Practitioners).

An allied health professional is someone who is not a doctor, nurse, dentist, optometrist, or pharmacist. Allied health professionals provide various services to support the diagnosis, treatment and prevention of diseases and disorders, and includes professionals such as social workers, occupational therapists, and physician assistants.

For the purposes of this guideline document, we use the term ‘specialist’ to describe a mixture of specialized professions (i.e., geriatricians, neurologists, psychiatrists, etc.)

“Good practice statements are developed when there is high certainty that the desirable effects of an intervention clearly outweigh its undesirable effects, but the body of supportive evidence is indirect and other criteria for their development are fulfilled” (Dewidar et al., 2023, p. 189).

Knowledge translation and exchange is about understanding the most important challenges that need to be addressed, learning about the best available solutions, and sharing that knowledge in ways that encourage action and change.

Grading of Recommendations, Assessment, Development, and Evaluations; A framework for the development and summary of clinical practice recommendations.