Lived Experience Network Communications
Wednesday, October 19th we have an especially exciting Provincial Live Chat event planned. We will be welcoming special guest Laura Meil a Manager for the Partnership and Consultation Unit, Capacity Planning and Priorities Branch with Ministry of Health and Long Term Care.
Laura will be co-facilitating this live chat and brings with her questions that will inform the creation of the Provincial Dementia Strategy. The questions Laura will be asking are:
1.What would make it easier for people with dementia and their care partners to navigate existing available services and supports?
2. What existing services or supports are most effective in assisting care partners of people with dementia?
3.What would an ideal dementia-friendly community look like?
We hope you will attend! Your input as people with lived experience will be so valuable in the shaping of the new Provincial Dementia Strategy!
I don't know about you but May snuck up on me. I can't believe it is already time for our next live chat event! Our next date will be THIS Tuesday, May 5, 2015 from 6:30-8PM.
The idea for this month's topic came from a member of our lived experience network. The suggestion is for everyone to share what situations, policies and practices have made you and your family member/friend living with dementia feel very supported. This month rather than asking what is not working, we will ask what IS working and learn from that.
Our day time chat, scheduled for the third Monday in May will be cancelled this month due to the Victoria Day holiday.
As well as visiting with different advisory groups from across the South East, I have been able to participate in some interesting committee meetings with community partners including Quinte Health Links and The Brighton/Quinte West Health Services Committee speaking on your behalf. I also had the priviledge of meeting some of you in person last week at the Belleville Dementia education day "In My Shoes".
I hope you will join us this week with your stories, input and observations for change. I believe your observations are being heard (and listened to) by the people who create, design and provide services for older adults living with dementia and similar diagnoses in South Eastern Ontario.
Thanks making a difference!
Sharon Osvald, Lived Experience Network Coordinator
April is upon us and that means a new live chat topic!
Our first PM live chat event (the first Tuesday night of the month from 6:30-8PM) will take place on Tuesday, April 7th and our live noon hour chat (the first Monday of the month from noon to 1pm) will be on Monday, April 20th.
This month’s topic "What's Next?" comes from an advisory meeting conversation with the Kingston Alzheimer Society.
Several participants, living with dementia, expressed concern that although they feel supported and informed in their current situation, they did not feel informed or equipped for things that lay ahead. (i.e. what is the role of CCAC?, what happens if we go to the hospital? who is my contact person if I have questions about the future and navigation?) Come prepared to share your stories about how you feel about this issue and suggestions for how this "gap" could be improved. Simply join or sign in to www.dementiacrossroads.ca and click on the “Chat” page and follow the very easy links.
Also, if you are a medical professional from South Eastern Ontario and you’d like to learn more about the findings of the Lived Experience Network, please email me at firstname.lastname@example.org . I will add you to our monthly Lived Experience Resource Exchange email, summarizing the face to face, phone and online conversations that have taken place that month.
Looking forward to joining you in the sharing the voice of the lived experience living with dementia and similar diagnoses!
~ Sharon Osvald, Lived Experience Network Coordinator
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 email@example.com.
Sharon Osvald, Lived Experience Network Coordinator
Firstly, I'd like to invite to participate in February’s PM Live Chat event: next week on Tuesday, February 17th from 6:30-8PM. Our topic comes from one of the Psychogeriatric Resource Consultants and should be an interesting one: “Based on your lived experience moving through the health care system, How Can Transitions be Improved?” Due to my schedule we will not be having a noon hour chat in February.
Beginning March 2015, we have decided to choose a date and stick to it. This would make it easier for people to promote our chats. Our evening chats will now take place the first Tuesday of every month from 6:30-8PM and the noon hour chat will be the third Monday of every month (as able). Please spread the word!!
Another new thing that is happening within the Lived Experience Network, is we have come upon another way to share the information you pass on to me - with the medical community and the people who plan and provide the services you receive as families affected by dementia and similar diagnoses. This month we have begun a new Lived Experience Resource Exchange. At the end of every month, summaries of the conversations we have had in live chats, through phone calls and face to face advisory meetings are compiled into themes (complete with many of your great quotes) and shared with 60+ health care partners across the region via a monthly email. Your stories are making a difference!
Hello Members of the Virtual Lived Experience Café,
I just wanted to give you all an update as to where I am "at” with the Lived Experience Network.I must confess, I am further behind in my time line than I had hoped to be – particularly in the completion of the Lived Experience Report. I have now met with groups from all regions in the South East and feel confident that everyone will be represented fairly.
Some good things have kept me behind on my schedule. One on Mother’s Day, my daughter brought our first grandchild into the world: Grace Ellie. Secondly, I have had some really good opportunities to present the collective findings of our population at Provincial, Regional and National Levels having travelled to several talks/workshops with Dr. Ken LeClair in Toronto as well as assisting with our local In My Shoes Event.
Looking ahead, I have been asked to share the collective observations of our population with Behavioural Support Services of Providence Care for some specific projects and services they are developing and assessing. It is my hope that between our future visits and the online discussion boards and live chats, we will be able to provide some specific real lived experience feedback that will help impact the services – new and old.
Thank you so much for your involvement with the Lived Experience Network. Since our launch in March, we’ve had 34 members join the site, sharing observations for change with the medical community and with each other.
I wanted to share a few things with you.
The Discussion Boards: You will see a slight change in our discussion boards. Initially, when we first began the site, a list of generic discussion boards were chosen to get the conversations going – i.e. Long Term Care, Respite etc. However, because the technology on www.dementiacrossroads.ca does not support the ability to answer individual comments, these long broad conversations have been a bit more difficult to follow.
As you will see, I have created more specific discussion threads based on the topics you have shared. Moving forward, I encourage you to begin your owntopics – i.e. Hearing Aid Suggestions, Website Recommendation, Helpful Service, Emergency Room Experience etc. This will make our conversations more specific and easier to participate in. Please be sure to check out some of the interesting conversations that have recently been posted. One in particular of interest is the recent request of "bluebird” who is looking for input for Questions For Candidates before the June 12th election. There are also some great tips for caregiving by "Ryley” and others. Be sure to visit all the boards and add your advice and observations for change.
Live Chat: Each month The Lived Experience Café will be hosting two Live Online (typed) Chats – one during the day and one in the evening. Please note, this month I am busy preparing a report outlining my findings from the face to face interviews, phone calls and online conversations I have been having since this project began last Fall. Therefore, there will not be a Live Chat in May, Our Next Live Chat Event will be Monday, June 23 DAYTIME CHAT from noon to 1PM AND Tuesday, June 24th EVENING CHAT from 6:30 to 8PM. Topic to be announced. I will be sure to pass on my findings to all of you!
I look forward to speaking with you in the coming days. Thank you again for taking part in this important sharing of knowledge. Please keep spreading the word with your friends and family!
Lived Experience Coordinator
Behavioural Support Services of S.E. Ontario
in partnership with the Alzheimer Societies of S.E. Ontario