Conference report: National dementia conference

Inspiring and Informing a National Dementia Strategy for Canada
May 14-15, 2018 – Ottawa, Ontario

On May 14–15, 2018, a National Dementia Conference hosted by the Honourable Ginette Petitpas Taylor was held in Ottawa, Canada. The key messages and ideas summarized in this report are for information only, and are not intended to indicate a consensus of opinion or agreement. In addition, the opinions and views expressed at this conference are those of the participants and do not necessarily reflect the opinions and views of the Government of Canada.

Table of contents

Executive Summary

The National Strategy for Alzheimer’s Disease and Other Dementias Act (the Act) came into force on June 22, 2017, and requires the federal Minister of Health or delegated officials, in cooperation with representatives of provincial and territorial (PT) governments, to develop and implement a comprehensive national dementia strategy.

As per the Act, activities to be considered in the National Dementia Strategy include:

  • Developing specific national objectives.
  • Encouraging greater investment in all areas of research.
  • Coordinating with international bodies.
  • Assisting the provinces in developing and disseminating:
    • diagnostic and treatment guidelines;
    • best practices for improving the quality of life of people living with dementia and their caregivers, including greater integration of care, chronic disease prevention and management as well as coordination of community support and care; and
    • information, to health care professionals and to the general public, on the importance of prevention, management, and early intervention in Alzheimer’s disease and other forms of dementia.
  • Making recommendations on the development of guidelines for standards of dementia care.


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Organization: Public Health Agency of Canada
Published: August 2018
ISBN: 978-0-660-27529-1
Pub.: 180272

The Act also calls on the federal Minister of Health to convene a national dementia conference and establish an advisory board.

On May 14–15, 2018, a National Dementia Conference was held in Ottawa, Canada. The conference brought together about 200 participants from six key stakeholders identified in the Act: people living with dementia, caregivers, researchers, health professionals, advocacy groups and representatives from PT governments.

As a key consultation mechanism on the development of the national dementia strategy, the discussions during the conference focused on challenges and opportunities surrounding three overarching themes: 1) care and support; 2) research and innovation; and, 3) awareness raising, stigma reduction and public education.

Participants noted that the National Dementia Strategy should: address stigma associated with dementia; ensure the needs of people living with dementia at different stages along the dementia journey are met; and identify ways to enable quality of life and dignity for people at different stages of the condition. It should: enable collaboration and partnerships among all levels of government, partners and stakeholders, including people living with dementia, their families and those who care for them; enable sharing and scaling up of best practices within and across provinces and territories; consider diversity factors such as cultural, ethnicity and linguistic considerations, rural and remote communities, gender differences, developmental disabilities; and include clear accountability for federal, provincial and territorial governments and other partners.

This report provides highlights of the discussions at the event. The outcomes of the conference and other stakeholder engagement processes to date will be included in a “What We Heard” report, which will be released in the Fall of 2018. All input will inform the development of the National Dementia Strategy.

About the Conference

As mandated by the National Strategy for Alzheimer’s Disease and other Dementias Act (the Act), the federal Minister of Health held a conference on May 14-15, 2018 in Ottawa, Canada. Approximately 200 participants attended the conference, including representatives from the six stakeholder groups identified in the Act:

The conference provided an opportunity for participants to share perspectives on the three overarching themes identified in the Act, including:

  1. care and support;
  2. dementia research; and
  3. awareness raising, stigma reduction and public education.

For each theme, time was allocated for:


Conference planning committee

A Conference Planning Committee was established to design the content and program of the conference. Membership included two people living with dementia as well as individuals from:

Conference program

The provisions of the Act provided the foundation for the design of the conference program. PHAC drew on the expertise of the Conference Planning Committee, as well as key dementia stakeholders and representatives of federal, provincial and territorial (FPT) governments to inform the program content. Special attention was given to the needs of people living with dementia to ensure that an accessible, respectful and comfortable environment was maintained throughout the event, where they would be able to fully engage in the discussions. Activities included:

Opening Remarks

“We are not equipped for dementia [on reserve]. This is a growing population and we respect our elders especially at their last moment of their life…”

Algonquin elder Annie Smith-St. Georges

The conference opened with welcoming remarks by Algonquin elder Annie Smith-St. Georges, who also shared a personal story about her experiences with the health care system when her father developed dementia in later life. Her personal story underscored existing gaps in needed services in Indigenous communities, including care that is close to home and community, and delivered without discrimination. Annie Smith-St. Georges highlighted the importance of working together to ensure better care for the elderly and people living with dementia.

“Imagine a world where a diagnosis of dementia is not met with fear, but with hope and understanding…”

Federal Minister of Health, Honourable Ginette Petitpas Taylor

The federal Minister of Health, Honourable Ginette Petitpas Taylor, welcomed participants and shared how she had been personally impacted by dementia when her mother was diagnosed with the condition. Through her personal story, the Minister highlighted the importance of community resources and education to help family members understand dementia and find the right care and support for their loved ones.

Minister Petitpas Taylor also reiterated the federal government’s commitment to the development of a national dementia strategy that will meet the needs of those living with dementia and their family and caregivers. As a part of this process, the Minister announced the establishment of a new Ministerial Advisory Board on Dementia, including the Board’s co-chairs: Pauline Tardif, Chief Executive Officer (CEO) of the Alzheimer Society of Canada and Dr. William Reichman, President and CEO, Baycrest Health Sciences. Membership is broad, including people living with dementia, caregivers, researchers and advocacy groups working directly with those diagnosed with dementia and health care professionals.

What we heard at the conference

For each theme, conference participants identified a number of challenges and ideas, solutions and opportunities. The discussions are summarized according to the three main themes of the conference program; however, many of the challenges and solutions are relevant to more than one theme.

Care and support: Summary of discussions


“Once she [the doctor] entered the room, I felt like I no longer existed. She did not look at me, and she spoke with my husband. She told him that I had early onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself… she treated me with such disrespect…”

Phyllis Fehr, Person Living with Dementia, Board Member of the Dementia Alliance International

“The assessment process within my care pathway was riddled with anxiety, confusion, long wait times, and an overwhelming lack of understanding
of the next steps of care…”

Mary Beth Wighton, Person Living with Dementia, Chair of the Ontario Dementia Advisory Group

Ideas, Solutions and Opportunities

To address these challenges, conference participants offered the following approaches for moving forward:

Research: Summary of discussions


“Everybody, not only researchers, have to speak with research teams to make sure that the real needs, the real challenges are being identified so that we will roll our sleeves together and really move forward in an enhanced way…”

Yves Joanette, Scientific Director of the Institute of Aging, CIHR

Ideas, Solutions and Opportunities

To address these challenges, conference participants offered the following ideas, solutions and opportunities for moving forward:

Awareness raising, stigma reduction and public education summary: Summary of discussions


“[Imagine] the stigma that goes with ordinary care and multiply it by 10 to get a beginning estimate of what happens when people with dementia go into the hospital…”

Kenneth Rockwood, Professor of Medicine and Alzheimer Research, Dalhousie University

Ideas, Solutions and Opportunities

To address the identified challenges, conference participants offered the following ideas, solutions and opportunities for moving forward:

Cross-Cutting Issues

In addition to the three overarching themes of the conference program, participants identified challenges and opportunities related to the following issues across the three main conference themes:

Inclusion and engagement of people living with dementia and caregivers

Throughout the two day event, participants emphasized the critical role of diverse voices of people living with dementia and those who care for them in discussions about dementia research, programs and interventions as well as the design of systems of care and strategies for awareness raising/stigma reduction. Including stories of peoples’ lived experience recognizes the expertise they bring to the discussion and is a powerful tool to change attitudes.

The engagement of people living with dementia and their caregivers will help ensure that research is relevant and focused on the most important priorities. In addition, bringing the patient and caregivers’ experiences into health policy and system design can improve quality of care and the supports they need.

Building on “nothing about us without us”, the participants highlighted the incredible potential to harness the passion and intelligence of people with lived experience.

Human rights

Participants emphasized the application of a human rights lens to the national dementia strategy and the integration of principles of equity, diversity and inclusion throughout. They also signaled the importance of aligning with global and national charters of rights for people living with dementia, particularly with respect to criminal justice.


Participants reported that people in different parts of the country experience inconsistent access to dementia care, services and supports, especially in rural, remote and Northern communities. Information and services tend to be designed to meet the needs of the dominant culture; as such, they do not reflect the diversity of needs and may exclude Indigenous populations and other linguistic and cultural groups. It was also noted that it is important to consider the needs of people at a more advanced stage of dementia and of those with developmental disabilities, whose voices and experience throughout the dementia journey may be overlooked.

What might success look like?

Next Steps

The ideas and insights shared in the dialogue sessions will guide the development of Canada’s first National Dementia Strategy.

In fall 2018, a What We Heard report will be shared that will synthesize the sum of input received through this conference and other activities undertaken by PHAC in the lead up to the May 2018 National Dementia Conference.

The National Dementia Conference was a critical milestone. The Public Health Agency of Canada will continue to engage with dementia stakeholders and partners through the newly established Ministerial Advisory Board on Dementia and the FPT Coordinating Committee on Dementia as well as bilateral opportunities to inform the development of the National Dementia Strategy.

Closing remarks

Minister Petitpas Taylor thanked participants for sharing their experiences, for their honesty, and their engagement in rich and informative conversations. She noted that the voices of dementia champions are needed to challenge the status quo and help to affect change. She highlighted the important role of all partners and stakeholders in addressing the challenge of dementia and emphasized that governments, acting alone, cannot bring about the required changes.

In closing, Minister Petitpas Taylor urged participants to dream big for a future where innovative solutions will provide the best care and where diagnosis will not be met with fear, but with hope.

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