Defining Lived Experience: Insights from The Lived Experience Network South East Ontario
Lived Experience refers to both people living with dementia, complex mental health, substance use and/or neurological disorders as well as their family/ friend care partners. This includes people directly involved with the individual on a personal level; providing emotional support, assisting in decision making and/or providing informal caregiving (past or present). These care partners (along with the individual) are able to share their observations, input and suggestions for change, both clinical and non-clinical, about the quality of the various interactions and touch points experienced between the individual and the system of care, across the entire continuum of care."
A community for individuals living with dementia, complex mental health issues, substance use or other neurological disorders. This includes those who are currently facing these challenges as well as those who have dealt with them in the past. Additionally, it serves as a supportive space for their families, friends and care partners from across South Eastern Ontario to share their experiences, advice and input with the healthcare community and each other.
We aim to create meaningful services and support, the voices of those using these services must be heard. Our goal is to create a virtual lived experience network - a "knowledge bank" of people across South East Ontario to be that voice. Open the document below to learn how you can participate in an Advisory Lived Experience conversation.
View or downloadable PDF handout
Our History
The Lived Experience Network South East began in September 2013 under the leadership of Dr. Ken LeClair of Behavioural Support Services Providence Care, in collaboration with the Alzheimer Societies of SE Ontario.
The goal was to develop and sustain a network of older adults and family/friend care partners living with dementia, complex mental health, substance use or other neurological disorders to share their lived experiences, advise and input with the medical community and with each other. These advisory conversations would inform service providers who provide, plan, develop and evaluate services for older adults in this population.
Originally, conversations took place in face-to-face meetings, facilitated by the Lived Experience Network Coordinator and South East Ontario Alzheimer Society support groups. With the support of Dr. Dallas Seitz and the website www.dementiacrossroads.ca, the Lived Experience Network held monthly discussions through live typed "Chats", asking questions brought forward from regional service providers and community partners.
Drawing on the experience of supporting her mother who was living with vascular dementia, Sharon Osvald led the Lived Experience Network South East from 2013 - 2018. From 2018 - 2023, Vicky Willis led the network as the Lived Experience Facilitator. Vicky is an elder care advocate who cared for her husband Jeff who was living with frontal temporal lobe dementia, something that started to affect him while he was still in his forties. These experiences gave Vicky a unique perspective and ability to support younger family/friend care partners. Sharon Osvald returned to the role of Lived Experience Facilitator in January 2024.
In the past five years, Sharon gained experience working for the Alzheimer Society and continues to work part-time at an Adult Day Program. She understands from both a lived experience and professional perspective how great the needs are in this community and looks forward to being a part of sharing the voice of the Lived Experience Network, in hopes of enhancing services across the region.
Our Team
- Sharon Osvald, Lived Experience Facilitator, South East Ontario
Providence Care Seniors Mental Health:
- Kathy Baker, Regional Director, Community Seniors Mental Health and Behavioural Support Services
- Kim Schryburt-Brown, Clinical Resource Project Consultant
Alzheimer Society of Kingston, Frontenac, Lennox & Addington:
- Kathleen Ingram, Executive Director
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Contact Us
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Sharon Osvald, Lived Experience Facilitator, South East Ontario
Phone: (343) 645-6240
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