The Lived Experienced Café
A place to engage older adults with dementia, mental health, substance use and/or neurological disorders their family, friends and care partners from South Eastern Ontario to share their experiences, advice and input with the medical community and each other.
Care partners of those living with dementia, mental health, substance use and/or neurological disorders report feeling:
- They don’t know where to find answers or services
- No one is listening to them
- Helpless and no one cares
The Lived Experience Café is hosted by Dementia Crossroads, the website of Behavioural Support Services, Providence Care Seniors Mental Health (Kingston, Ontario) working in partnership with the Alzheimer Societies of SE Ontario. We believe to create meaningful services and supports; the voice 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 Eastern Ontario to be that voice.
This is an opportunity for people to have an advisory role - sharing insights and suggestions for change (anonymously) partnering with professionals who plan and provide services for older adults across the health care continuum. Sharon Osvald, the Lived Experience Network Coordinator and the Lived Experience Café website facilitator, invites you to join the conversation.
Defining Lived Experience?
"Lived Experience refers to both the older adult living with dementia, mental health, substance use and/or neurological disorders as well as their 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 medical community, across the entire continuum of care."
How Can You Be Involved?
- Join The Lived Experience Café site/community and take part in our discussion forums and/or monthly Live Chat Events to share your advice and observations.
- Contact Sharon or your local South Eastern Ontario Alzheimer Society to find out how you can be part of a group that speaks with Sharon in person.
- Provide Sharon with your story – to share – in a manner that honours the confidentiality of all - on our Testimonial Page and/or your story and contact information to be part of any future "specific” planning/evaluation conversations or working groups that may arise.
- Phone / Email / Write Sharon Osvald and begin your own personal conversation with your suggestions for change.
Discussion Forums and Live Chat?
We invite you to share your thoughts, suggestions for change and lived experiences in our Discussion Forums (on the Forum Page) and during our monthly Live (typed) Chat Events. This room is a place for you to be heard and to make a difference.
Live Chats? The Lived Experience Café has a live (typed) PM chat the first Tuesday of the month from 6:30-8:00PM. We have decided to discontinue our Monday noon hour chats due to lack of numbers. Happily, our PM chats are well attended and we welcome you to join in to one of them. Our next date is: Tuesday, June 7th from 6:30-8:00PM.
The idea for next month’s chat:
This month’s topic comes from Behavioural Support Services, Providence Care Seniors Mental Health and has also been part of recent Provincial Lived Experience Network discussions.
When caring for an older adult who cannot clearly communicate their needs and feelings, it is essential that health care providers know that person’s history, family stories, life events, as well as traumatic and joyful moments where there is strong emotional connection.
- What is a reasonable ask for family/care partner participation when gathering that information? What are you willing to do?
- If a standardized tool was created to gather that information – what should it look like?
- When is the best time to ask/collect this information from families/care partners?
- How do you think this could be shared effectively with health care providers?
To join in the conversation, just before the chat time, sign on to www.dementiacrossroads.ca , click on the Chat page and follow the links. You can use your real name or a nick name if you prefer to be anonymous. I have made every effort to keep this as simple and user friendly as possible. I hope you’ll join in. We also invite you to leave your comments on our Forum page.
Discussion Board and Live Chat Policy (please read before joining):
Although, some of our stories are not positive/happy stories, this site is not simply a place to voice our complaints. Rather, it is a community to share our stories through the lens of hope with the aim of sharing our lived experiences and making things better for others.
1. Please do not use full names of the people you are caring for. Do not use real names of medical staff, volunteers or the names of hospitals or facilities in your posts.
2. Swearing, name calling or comments that are aggressive and "bashing" towards others are not welcome and will be deleted.
3. We invite you to take advantage of this online space for the amazing purpose of sharing your insights, stories and suggestions for change, as well as your observations of where you saw good things happening in your care experience.
We hope you will felt supported, heard and learn something from each other.
Why is there an ONTARIO page? The Lived Experience Café is inviting voices of the lived experience from across the province of Ontario to share their input and suggestions for change.
Along with her ongoing work with the SE Ontario Lived Experience Network, Sharon Osvald is now working as the Provincial Lived Experience Network Coordinator in partnership with the Behavioural Supports Ontario Provincial Coordinating Office and brainXchange. The Lived Experience Café will now be hosting a bi-monthly province-wide live chat event and the discussion forums will include those with lived experiences from all over Ontario. For more details visit the Ontario page. The first Provincial Live Chat event will take place Wednesday, June 15th from 6:30-8PM.
What is the Resource Exchange? Many services have a difficult time engaging patients and receiving tangible feedback – outside of (after-the-fact) satisfaction surveys - to help them plan and evaluate what they do.
The Lived Experience Resource Exchange is an opportunity for those who plan and provide services for older adults in SE Ontario to receive the findings of our Lived Experience Network face to face, phone and online conversations. On a bi-monthly basis, Sharon will share the summaries and themes that surfaced in these conversations in a manner that honours the confidentiality of all. For more information visit the Resource Exchange page. You will also see the Findings of our 2013-2014 Study of over 200 lived experience persons in SE Ontario – highlighting 6 of the Key Priorities Valued by people and their care partners.
Please Join Us:
It is our hope that these conversations will help inform how services are provided, designed and evaluated. The Lived Experience Network is not a complaints department, rather an incredible resource with real people who want to share both their experiences – good and bad – so we know what is needed.
"Honouring People, Possibilities, Partnerships" ~ Behavioural Support Services, Sept 2013
Sharon Osvald, Website Facilitator
Lived Experience Network Coordinator
Behavioural Supports Services of
Providence Care Team:
Dr. Ken LeClair
Dr. Dallas Seitz
Alzheimer Societies of SE Ontario:
Executive Director of KFL&A
How to Reach Sharon Osvald:
Phone: 613- 475-9943
P.0. Box 73, Brighton, ON.
Facebook: Virtual Lived Experience
Lived Experience Network: View Brochure
South East Community Care Access Centre: View PDF
Understanding Dementia: View PDF