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.)
Lived Experience Network Facilitator for South East Ontario
We are pleased to announce and welcome Vicky Willis to the position of Lived Experience Facilitator for South East Ontario.
We believe in order to create meaningful services and supports; the voice of those using these services must be heard. The Lived Experience Network is a joint initiative with Providence Care, the Alzheimer Societies of South East Ontario, and the people living the dementia care journey. To date there have been over 900 people with lived experience involved in advisory conversations. We would like to acknowledge the tremendous work of Sharon Osvald in starting the Lived Experience Network in 2013 and wish her well in her new role with the Alzheimer Society Hastings, Prince Edward. Sharon will be working with Vicky as she transitions into the role of Lived Experience Facilitator.
Vicky is originally from Toronto and attended St Lawrence College Kingston for Fashion Design. While in Kingston, Vicky met her husband Jeff who at the time was attending the Royal Military College. Vicky and Jeff were married in 1986 and have two daughters (29 & 26). With Jeff’s military career they lived in many places throughout Canada and spent 2 years in Germany on the Rhine with the British Army. Vicky has worked in a variety of positions with the most recent as an Administrator in an Addictions clinic after pursuing an accelerated degree in Health Information Management.
In 2010, Jeff was diagnosed with Frontotemporal Lobe Dementia at the age of 47 and lived at home for 4 years with Vicky as his main partner in care. With increasing concerns for Jeff’s safety and well-being, Vicky was faced with the difficult decision to transition Jeff into a Long Term Care Home. Jeff remained in Long Term Care for 4 more years and passed away May 1, 2018. Vicky has participated in support groups with the Alzheimer Societies in both Kingston and Leeds & Grenville. In addition, Vicky facilitated a support group in Gananoque for 2 years. In 2014, Vicky was one of four people in Ontario to win the Heart of Home Care Award, being recognized for her extraordinary efforts caring for her husband enabling him to live at home for as long as possible!
Vicky and Jeff’s journey with frontotemporal lobe dementia; Vicky’s passion to hear the voices of lived experience; and her commitment to improve the system of care by having conversations that matter will be invaluable as she assumes the role of Lived Experience Facilitator. Vicky transitions to her new role on November 26, 2018.
Please join us in welcoming Vicky and we look forward to your ongoing participation in the South East Lived Experience Network!
Vicki Poffley, Executive Director Alzheimer Society KFLA
Kathy Baker, Regional Director Seniors Mental Health Behavioural Support Services, Providence Care
See the Ontario page for details about the BSO Provincial Lived Experience Advisory.
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.
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 SE Ontario Lived Experience Café has a live (typed) PM chat the first Tuesday of the month from 7:00- 8:30PM. We also host bi-monthly province wide chats for the Behavioural Supports Ontario Provincial Lived Experience Network Advisory. These chats take place every other month on the third Wednesday with the exception of August and December from 7:00-8:30PM (October,February, April and June).
This month's SE Ontario chat date will be Tuesday June 4, 2019
SOUTH EAST Ontario CHAT TOPIC:
Date & Topic: Tuesday June 4, 2019
Last month we discussed what support means to family/caregiver and what types of supports people found helpful. Through this discussion we realized there are gaps in the current supports. We discovered there is a need for legal/financial advice and support, as well as the traditional personal support from groups and day respite. This month we are interested in exploring what other types of support you would find helpful. Is support still a conversation in a circle or should it be part of an activity: bereavement, painting, quilting etc…? Should support be aligned with the type or stage of disease, or by the caregiver’s ability to attend a group? What about online support groups, or groups of people who meet at a local restaurant?
The leadership team of the SE Lived Experience Network look forward to hearing your feedback as we continue to exchange knowledge and partner for change!
The next Provincial Live Chat will be Wednesday, April 17, 2019 from 7:00-8:30 PM will be cancelled. Next date and topic to be announced soon.
Provincial Topic: To Be Announced.
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.
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.
Sharon Osvald continues to work as the BSO Provincial Lived Experience Facilitator in partnership with the Behavioural Supports Ontario Provincial Coordinating Office and brainXchange. The Lived Experience Café also host 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 Provincial Live Chat event will take place every the third Wednesday of every other month from 7:00-8:30 PM with the exception of August and December (October, February, April and June). See the Ontario page for the details.
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
Behavioural Supports Services of
Providence Care Team:
Dr. Dallas Seitz
Dr. Ken LeClair
Alzheimer Societies of SE Ontario:
Executive Director of KFL&A
BSO Provincial Lived Experience Facilitator
How to Reach Vicky Willis:
Lived Experience Network: View Brochure
BSO Provincial Lived Experience Advisory: View PDF
Understanding Dementia: View PDF