Mary Burnett is Chief Executive Officer of the Alzheimer Society of Brant, Haldimand Norfolk, Hamilton Halton. She has more than 30 years of senior management experience in government, health care, social services and education. Her organization was one of the first to undergo a voluntary integration under the LHIN Act in 2009, bringing together three smaller Societies in order to enhance services to those affected by dementia. Recognized as an innovator and creative thinker, Mary has won multiple awards for her leadership and team building skills. A life‐long learner, Mary holds both bachelor and master’s degrees in education, and completed her Master’s of Health Science Administration at the University of Toronto.
Empowering Dementia-friendly Communities Hamilton, Haldimand Project
Laura Garcia Diaz is a dual degree candidate (MSc Occupational Therapy/PhD Rehabilitation Sciences) in the School of Rehabilitation Science, McMaster University. Laura is working with the Hamilton Council on Aging and partners on making Hamilton and Haldimand County more inclusive for people living with dementia and their caregivers. To support a more systematic approach to the development, implementation, and evaluation of dementia-friendly communities, Laura’s work focuses on evaluation research.
Phyllis Fehr was given a working diagnosis of early-onset Alzheimer’s at 53 years old. Since the diagnosis, Phyllis commits much of her time doing anti-stigma work related to dementia and promotes the rights and abilities of people living with dementia locally, nationally and internationally. Her policy work includes past member of the Ontario Dementia Advisory board, Advisory Group for the Ontario Dementia strategy and the Early Stage Working Group.
Her work includes co-author of multiple research articles and keynote speaking on the lived-experience of dementia, human rights and anti-stigma education. Phyllis spoke at the United Nations – the Rights of Persons with Disabilities and at the Senate of Canada, Social Affairs, Science and Technology. She is currently an active member of the Alzheimer’s Board for BHNHH; Reimagining Dementia: A Creative Coalition for Justice, Dementia Alliance International Alumni and provides local leadership to the Empowering Dementia-friendly Communities Hamilton, Haldimand project.
Mary Burnett, Hamilton Council On Aging, Canada
Laura Garcia Diaz, McMaster University, Canada
Phyllis Fehr, Lived-Experience Advocate, Canada
It is estimated that 50 million people are living with dementia worldwide. A dementia diagnosis has an impact on the person living with dementia, their formal and informal caregiver(s) and whole communities. A dementia-friendly community is a community in which people with dementia are included, supported, and empowered to recognize their full potential and to advocate for their rights. The aim of this symposium is to increase participants’ understanding of how to support people living with dementia to lead the development, implementation, and evaluation of a dementia-friendly community initiative, so that the end-result supports the right of ongoing participation in society. By the end of this session participants will have a better understanding of (1) the dementia-friendly community concept and how it has been implemented worldwide and in Canada; (2) why and how the Empowering Dementia-Friendly Communities Hamilton, Haldimand project has focused on the empowerment of people living with dementia to drive change; (3) what it means to meaningfully engage people living with dementia in the development and implementation of policies and services that affect their life; (4) existing frameworks that support the evaluation of a dementia-friendly initiative and how to optimize the voices of persons living with dementia in evaluation. A dementia-friendly society acknowledges and honors the rights of the person with dementia, empowering and improving the lived experience of those living with and impacted by dementia. This symposium will provide attendees with an overview of how leaders, community members, and stakeholders working on a dementia-friendly community initiative can empower and support people living with dementia to build inclusive societies and be advocates for meaningful change.
Presenter #1, Laura Garcia
Looking at dementia-friendly communities: Global and local perspectives
A dementia-friendly community is a community where people living with dementia feel acknowledged, supported, included, respected, and understood. Dementia-friendly communities are emerging as a promising approach to help improve the quality of life for people living with dementia, their care partners, and their families. In this presentation will provide a brief overview of the concept of dementia-friendly communities and common characteristics of dementia-friendly community initiatives from around the world. We will then provide an overview of dementia-friendly community initiatives in Canada, with a focus on the Empowering Dementia Friendly Communities Hamilton, Haldimand initiative. In this presentation we will review why it is important to work towards becoming a dementia-friendly society and things to consider when thinking about developing and implementing a dementia-friendly community plan.
Presenter #2, Mary Burnett
The empowering dementia-friendly communities Hamilton, Haldimand Project – Our change story
The Empowering Dementia-friendly Communities Hamilton, Haldimand project is a four-year community-based, collaborative project funded by the Public Health Agency of Canada. This presentation will provide a high-level overview of project activities that will include the remote/virtual community consultation process with people affected by dementia in Hamilton and Haldimand communities and explore the five key themes that emerged from the consultation. The five themes are 1) empowerment of people living with dementia, 2) social inclusion and participation, 3) build awareness and reduce stigma, 4) build environments and, 5) community responsiveness to crisis/COVID19. We will explore how the consultation informed further localized action with the development of a dementia-friendly communities education program and two lived-experience leadership teams. We will describe the goals of the DFC education program, the development process including resources and outreach strategies. Lastly, we will describe the purpose, goals and intended outcomes of the lived-experience leadership teams in advancing the rights, inclusion and wellbeing of people living with dementia in their local communities.
Presenter #3, Phyllis Fehr
Meaningful engagement of people living with dementia: From tokenism to empowerment, a human rights perspective
The Empowering Dementia-Friendly Communities Hamilton, Haldimand is deeply rooted in the meaningful engagement of people living with dementia, which includes using a human rights lens. This presentation will explore moving from the tokenism of people living with dementia to empowerment through the engagement of their leadership. We will discuss the lived experience of tokenism from the perspective of a person living with dementia and then explore the personal and project implications for the inclusive design of dementia-friendly communities processes and empowerment as one of the outcomes. This presentation topic will be delivered by a project volunteer team member, who is living with dementia, and describe the story of the development of two lived-experience leadership teams, how it feels to be part of a team of partners that values inclusion, from being hidden to being seen, listen to, validated and empowered and the vision for moving forward.
Presenter #1, Laura Garcia
How to evaluate dementia-friendly projects
Program evaluation provides a significant opportunity to learn whether intended program outcomes have been achieved and can also inform quality improvement, further development, and sustainability of community-based programs. This presentation will provide a brief overview of evaluation frameworks that have been developed around the world to evaluate Dementia Friendly Community initiatives as well as those developed by leading public health organizations, such as the World Health Organization. We will then focus on how we are evaluating the Empowering Dementia Friendly Communities, Hamilton, Haldimand, starting with a review of our Program Logic Model, which outlines our key activities, short-term and longer-term outcomes, and impacts. Using this logic model as our foundation, we will describe how we have implemented summative and formative evaluations of specific program activities, such as the community consultation to seek input for this project, an annual project review with key informant input, and dementia friendly community education, describing evaluation objectives and outcome indicators and providing key findings and learnings from these evaluations. This presentation will review how to optimize the voices of persons living with dementia in evaluation and how to adapt evaluation to fit pandemic restrictions.