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May Lived Experience News


Hello Lived Experience Network Participants,

 After a  three month break, we have now secured funding for this project and I am excited to be working with you helping to promote the voice of those living with dementia and similar diagnoses.

Face to Face Meetings: I will be meeting with Alzheimer Society support groups, memory clinics and/or caregiver conferences for Lived Experience Advisory conversations  in Kingston, Belleville, Perth, Brockville, Brighton, Trenton and Tweed in the coming months. Please check the website Calendar for more details or contact your local Alzheimer Society. I enjoyed reconnecting with some of you at this week’s In My Shoes Caregiver event in Trenton!

Live Chat: We continue to host live typed chats each month – covering various topics, many of which come through our partnership with the health care community. This month live chat events take place the first Tuesday evening of the month from 6:30-8PM and the third Monday of the month over the noon hour.

The idea for this month’s chat came from one of our Lived Experience Café participants and her participation as part of the SEOntario LHIN Older Adult Strategy. Caregivers were asked to anticipate scenarios that could happen – i.e. a fall or crisis that would normally end in a trip to the Emergency Department. For the frail elderly and people living with dementia, that trip can be very difficult and sometimes cause new issues. So our question this month is a three-parter:

  1. As a caregiver or as a patient, have you experienced a trip to the Emergency Department? What was good about that situation and what could have improved?
  2. What type of supports would need to be in place for you to feel empowered enough to not take that ED visit?
  3. At the request of another Lived Experience Network member, we are going to add: As a care partner, what has your experience been like with the police when facing an emergency situation?

New Things on our Website:

Title and Logo: You may have noticed we changed the logo and title page on to focus more on the Lived Experience Café – recognizing that this page is not only about dementia but also invites older adults living with mental health, substance use and/or neurological disorders, their family, friends and care partners.

Testimonials: We have added a Testimonial page to the site. We invite you to write out your health care stories and lived experiences (in a manner that honours everyone’s confidentiality). We also welcome a few of your thoughts on how the Lived Experience Network has impacted you. Please email me at and I would be happy to add them to this page.

The Ontario Page: We are happy to announce that our site is branching out. The Lived Experience Café will now be hosting a bi-monthly province-wide live chat event in partnership with the Behavioural Supports Ontario Provincial Coordinating Office and brainXchange. (Date TBA). Discussion forums will also soon include those with lived experiences from all over Ontario. If you would like to take part in any of these provincial chats or other provincial advisory conversations, please let me know.

The Resource Exchange Page: 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, I will share the summaries and themes that surfaced in these conversations on this page. Information will be as general and confidential as possible. This page continues to share the Findings Presentation, which outlines the six key priorities that are valued by members of the SE Ontario Lived Experience Network. If you haven’t read it yet, be sure to check it out.

If you are a person with lived experience, come join the conversation. If you are health care partner, we invite you to share this information with your patients, residents and clients so they also can begin sharing their input and suggestions for change.

Kind Regards,

Sharon Osvald
Lived Experience Network Coordinator

Behavioural Support Services, Providence Care Seniors Mental Health
in partnership with the Alzheimer Societies of S.E. Ontario
Provincial Lived Experience Network Coordinator

Behavioural Supports Ontario Provincial Coordinating Office in partnership with brainXchange


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