The Lived Experienced Café
A place to engage older adults with dementia, complex mental health, substance use and/or neurological disorders their family, friends and care partners in both regional (South Eastern Ontario) and provincial (Ontario) advisory conversations 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 South Eastern Ontario Lived Experience Network - a "knowledge bank" of people across South Eastern Ontario to be that voice. This site provides an opportunity to hold these conversations through discussion forums and monthly live (typed) chat events.
The Lived Experience Cafe also hosts bi-monthly (typed) provincial chats in partnership with the Behavioural Supports Ontario Provincial Lived Experience Network Advisory. See the Ontario page for more details.
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. Vicky Willis, the NEW SE Ontario Lived Experience Network Facilitator and the Lived Experience Café website host, invites you to join the conversation. (Please see the Calendar for dates and locations when Vicky will be holding face to face conversations in your area.)
Defining Lived Experience?
"Lived Experience refers to both the older adult living with dementia, complex 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?
- Live Chats and Discussion Forum: 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.
- Face to Face Meetings: Visit the Calendar or Contact Vicky/ your local South Eastern Ontario Alzheimer Society to find out how you can be part of a group that speaks with Vicky in person.
- Phone / Email / Write Vicky Willis and begin your own personal conversation with your suggestions for change.
- SE Ontario Health Care Professionals?: Join the conversation by reading the bi-monthly Resource Exchange Page, a summary of all the lived experience network conversations and share these findings with your organization as they apply to you.
HOW TO CHAT? Visit http://dementiacrossroads.ca/chat.php to sign up and log in at chat time.
First, join our community by clicking the "Sign Up" tab. Fill in your information. Whatever username you choose will be what is displayed in the chat room. Feel free to use your real name or a nick name - whatever makes you comfortable.
To join in the conversation, just before the chat time, go to www.dementiacrossroads.ca , click on the tab that says "Chat". and click on the link that says LOGIN HERE AT TIME OF SESSION. You will be asked your username and password again (so be sure to write it down). This will take you right into the Chat Room. 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.
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, Vicky 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
Lived Experience Network Facilitator
Providence Care Seniors Mental Health and Behavioural Support Service
in partnership with the Alzheimer Societies of S.E. Ontario
Seniors Mental Health Behavioural Supports Services of SE Ontario
Providence Care Team:
Dr. Ken LeClair
Alzheimer Societies of SE Ontario:
Executive Director of KFL&A
How to Reach Vicky Willis:
Lived Experience Network: View Brochure
BSO Provincial Lived Experience Advisory: View PDF
Understanding Dementia: View PDF