If you are reading this blog, it is likely because you have been part of one (or more) live conversations – through Alzheimer Society Support groups meetings, phone calls, in-person conversations or online discussions regarding your lived experience of being affected by dementia or a similar diagnoses.
Since September 2013, when this network began, I have taken part in over 200 conversations, gathering your stories, suggestions for change and feeding that information back to people who plan and provide services for older adults living with cognitive impairment. As well as a report (that can be found here on the Findings page at www.dementiacrossroads.ca), I have also been able participate/speak at several Conferences, working groups and steering committees both regionally and provincially – feeding back the things that matter to you. Finally, last month, we began the “Lived Experience Resource Exchange” emailing monthly summaries of our conversations to over 60 health care providers, planners and leaders in the South Eastern Ontario region.
Thank you for your participation in these conversations and for your efforts to identify gaps and strengths in health care system in hopes of making things better for others. I’d like to invite you to take part in our discussion boards and live (typed) chat events – they are simpler than you think and a great way to have conversations about specific topics. These live chats happen twice a month. I hope you’ll join in.
Our next chat dates will be (next week) Tuesday, March 3, 2015, 6:30-8PM and Monday March 16, 2015 from noon to 1pm. Our topic this month is about "Relationships". I have been invited to share at a Workshop (called In My Shoes) for people and their families/friends living with dementia on the topic of : Family Relationships. This month in our live chat the invitation is to share some of your stories and insights surrounding the complexity of family and personal relationships when dementia becomes part of the story. What have you learned? How do you cope? What are your recommendations for people? Where are some of the key areas and situations where disagreements arise? Are there ways health care providers could help?
Our Live Chat Events: Our evening chats will take place the first Tuesday night of the month from 6:30-8PM and our day-time chats will be every third Monday from noon to 1pm.
If you haven’t been in touch for a while but have a story to share, please send me an email at firstname.lastname@example.org.
Sharon Osvald, Lived Experience Network Coordinator