If you haven't already checked, please note the summaries of all conversations with the SE Ontario Lived Experience Network for February and March 2017 are posted on:
The Lived Experience Resource Exchange for February/March 2017 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involve input from 41 people from across South Eastern Ontario. 36 people were spouses, adult children, family or friends and 5 people were older adults living with dementia, mental health or other neurological disorders.
If you would like to be added to our email list or to learn more about the SE Ontario Lived Experience Network or the BSO Provincial Lived Experience Advisory, email Lived Experience Facilitator, Sharon Osvald at email@example.com.
Find out what matters to people who matter!
If this is your first connection with us, welcome you to the SE Ontario Lived Experience Network. Thank you for your willingness to share your thoughts and observations about your experiences with the health care system.
I would like to make you aware of three things: 1. What’s happening Online 2. What’s happening with the Lived Experience Network (both here in the South East and Provincially) and 3. The location of upcoming face to face advisory/round table conversations.
- What’s Happening Online? Tuesday, April 4th is date of our next SE Ontario Live (typed) Chat Advisory Conversation - coming up next week from 6:30-8PM at www.dementiacrossroads.ca . Interesting point, this is also National Family Caregiver Day so Congratulations to you! We will be discussing the use of technology in caregiving. If you cannot attend or are not comfortable with communicating this way, you can still participate in this conversation by emailing me your answers to our live chat topic question.
Looking forward to your feedback. If this is the first time you’ve spoke with me (outside a face to face meeting) and/or you have never participated in a live (typed) chat before, visit www.dementiacrossroads.ca/chat.php for instructions. Remember when you join the site if you would like to maintain your privacy, use a nickname as your username. The username you choose will be displayed to the other online/chat participants. “See” you online. Feel free to email me if you have any questions or want some help getting logged on.
- What’s Happening with the Lived Experience Network?
Here in the South East, our advisory community continues to grow. In the past few months I have visited both Alzheimer Society Support Groups, community groups and Long Term Care Home Family Councils for face to face advisory conversations in Trenton, Brighton, Kingston, Belleville and West Lake, Ontario. As you provide your input and observations, I am sharing it in a bi-monthly report called The Resource Exchange (that you can find on the dementiacrossroads.ca website). I also participate in several regional committees, short term project teams as they come up, and am part of three Long Term Care home Behavioural Support Collaboratives (covering the entire South East region), where I am sharing your observations and suggestions for change based on what is important to you. Finally, please see the attached revised handout explaining the goals of the Lived Experience Network. Please share it widely!
Provincially, the Lived Experience Advisory is also doing exciting work. My hours have increased from working one day a week to two days a week and you will also see my job title has changed to Lived Experience Facilitator to reflect these changes. We were able to add our voice to plans for the developing Provincial Dementia Strategy and I participated as part of the Dementia Capacity Planning Clinical Advisory. Finally, last week four lived experience advisors and myself were able to take the Teepa Snow Positive Approach to Care Trainer course and look forward to supporting work that provides much needed education and hands on skills to family/care partners.
- Where Will I Be Meeting In Person?
Thursday, April 20th – Tweed at Moira Place at 10AM
Thursday, April 20th – Deseronto at the Wellness Centre at 2:00PM
Friday, May 12th – Napanee at the Lennox & Addington Seniors Outreach Services at 10AM
If you’d like me to come and meet with your group or have any questions about these dates, please send me an email. I’m looking forward to connecting with you!
Lived Experience Facilitator (South East & Behavioural Supports Ontario)
Providence Care Seniors Mental Health and Behavioural Support Services
in partnership with the Alzheimer Societies of S.E. Ontario &
BSO Provincial Coordinating Office in partnership with brainXchange
Home office: 613-475-9943
Over the course of 2010, somewhere between a peaceful, month-long visit in August and early November, my mom completely unravelled.
An undiagnosed delirium and vascular dementia coupled with some significant life changes like the sale of her house, the loss of her family doctor and moving several hours away to live with us left mom completely confused, frightened and in crisis. The next few months included trips to the emergency department, a failed attempt at living in a local retirement home and several months of her being restrained in hospital. Finally, with the help of a geriatric psychiatrist and team members from Providence Care, Mom‟s delirium was addressed, medications refined and we began to see parts our “real” mom come back to life. She entered a local Long Term Care home where she resides to this day.
At the time, I could not believe how hard it was to navigate the system. I was also taken aback at how far and how quickly a person can fall between the cracks when they can‟t find the right care. I started writing and speaking about our experiences. Shortly thereafter, I was introduced to Dr. Ken LeClair and began taking part in advisory discussions with both Providence Care Seniors Mental Health and Behavioural Support Services. In September 2013, I was selected by these organizations to work in partnership with the Alzheimer Societies of South Eastern Ontario to develop and coordinate a network of older adults and family/care partners. The network initiated meaningful “lived experience” advisory conversations by means of in-person and teleconference meetings. In March 2014, with the assistance of Dr. Dallas Seitz and Kathy Baker, The Lived Experience Café was launched on www.dementiacrossroads.ca providing opportunities for online chat conversations and discussion forums.
Our network began to grow outside of the South East and in April 2016, I was hired to work one day per week to coordinate the Provincial BSO Lived Experience Network Advisory. This included hosting bi-monthly live chats and bi-monthly video/teleconference advisory conversations.
It still amazes me how this initiative has grown and continues to grow. This past year, we‟ve been able to advise the Ontario Best Practice Exchange Collaboratives, provide recommendations for BSO projects, and have been consulted on other provincial projects such as: Health Quality Ontario‟s Quality Standards for Behavioural Symptoms of Dementia, the Canadian Dementia Setting Questionnaire (Alzheimer Society of Canada) and the Ontario Dementia Strategy (Ministry of Health and Long- Term Care).Future projects are just as exciting as we act upon recommendations from our BSO Provincial Lived Experience Advisory which include making recommendations for the use of personhood tools, improving navigation and enhancing care partner training opportunities across the province. I’m very pleased to share that my role has recently been expanded to two days a week and includes a position title change to that of BSO Lived Experience Facilitator.
If you would like to join this network (either as a person with lived experience or health care professional) visit the Ontario page on www.dementiacrossroads.ca. For more information, you can also email me at firstname.lastname@example.org or reach me by phone me at 613-475-9943.
Good afternoon Lived Experience Advisors,
I want to wish you all a very Happy New Year! Now that the holidays are behind us, be sure to join us tomorrow night - on Tuesday, January 3, 2017 from 6:30-8PM for the first live (typed) chat event of the year at www.dementiacrossroads.ca .
The topic for this Lived Experience Café live (typed) chat will be "Assessments".
In several of our face to face and online conversations, concerns have been raised about the manner in which assessments are conducted – whether it is for driving, cognitive or capacity tests, eligibility for services or Long Term Care take placement. Several of you have offered suggestions for how you feel things could be more consistent, compassionate and comprehensive.
Come prepared to offer your observations about
- What elements make an assessment respectful and supportive to the person (and family/care partner) as well as thorough and accurate?
- What are some practical suggestions for how assessments could be done differently?
- What are your thoughts on the process in which a person loses (and is told) they will be losing their driver’s license?
Looking forward to your feedback. If you have never participated in a live (typed) chat before, visit www.dementiacrossroads.ca/chat.php for instructions. Remember when you join the site if you would like to maintain your privacy, use a nickname as your username. The username you choose will be displayed to the other online/chat participants. “See” you online.
Lived Experience Network Coordinator
Behavioural Support Services, Providence Care Seniors Mental Health
in partnership with the Alzheimer Societies of S.E. Ontario
An Invitation to Lived Experience Network Advisors,
This is an invitation to participate in our upcoming Lived Experience Cafe "Live (typed) Chat event for South Eastern Ontario this Tuesday, December 6th from 6:30-8PM
December’s Talk is a bit of a “throwback”. Most of you became involved in the Lived Experience Network for SE Ontario after taking part in a face to face advisory meeting that involved a round table discussion. I thought it might be nice to have another one!
Come prepared to share some of your personal observations from where you are at in your journey as a care partner/ someone living with dementia mental health, substance use or other cognitive impairment. 1. Where are the gaps? 2. What’s working well? 3. Where do you need more support? and 4. What are some of the lessons you’ve learned along that way that have made things easier?
Looking forward to your feedback!!! If we have just this fall at an Advisory meeting, welcome to the community!
To learn what dates I will be in your area, visit the calendar on dementiacrossroads.ca In December and January I will be visiting Alzheimer Society Support/Advisory groups or Long Term Care Home Family groups and volunteers in: Belleville, Picton, Kingston, Trenton and West Lake. I'm always happy to get emails and phone calls too.
Exchanging Knowledge, Partnering for Change
An Invitation to Lived Experience Network Advisors,
Hello Everyone, If you are reading this page for the first time, I’d like to extend a warm welcome to the SE Ontario Lived Experience Network. We likely have met at an Alzheimer Society support group or Family Council Meeting and I am so pleased you can join the conversation!
This is an invitation to participate in our upcoming Lived Experience Cafe "Live (typed) Chat event this Tuesday, November 2nd from 6:30-8PM
November’s Live Chat question comes from Dr. Julia Kirkham, Queen’s University, Providence Care – Mental Health Services. Dr. Kirkham would like to ask those with lived experience two questions that have been coming up in her work recently:
1. When it comes to admissions to Long Term Care, in your opinion: Should people be “bumped” from the crisis list when they go to the Emergency Room? If not, how should it work if people are waiting for Long Term Care in hospital?
2. More often people (especially with behavioural symptoms) are being refused admission to Long Term Care? Should this be allowed? (and my question): If yes – What would a better solution be – community, living situation, etc. ?
HOW TO CHAT?
Visit http://dementiacrossroads.ca/chat.php . Once you have signed up to join the website community, then go the page called Chat and click the link says: log in at chat time. If you have any issues, send me an email to email@example.com and I will do my best to walk you through.
HOPE TO SEE YOU SOON
To learn what dates I will be in your area, visit the calendar on dementiacrossroads.ca In November I will be visiting Alzheimer Society Support/Advisory groups or Long Term Care Home Family groups and volunteers in: Picton, Trenton, Kingston and Tweed. I'm always happy to get emails and phone calls too. If you wish to unsubscribe from this email, please let me know and I will remove you from the list.
Exchanging Knowledge, Partnering for Change
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!
Resource Exchange and Findings
The Resource Exchange Page has been updated - sharing the key findings from all conversations that took place during the months of August and September - including a province-wide live chat event focused around Navigating the Health Care System.
August/ September 2016 Lived Experience Advisory Conversation
CHECK IT OUT:
Find out what matters to the those with lived experience by clicking: http://dementiacrossroads.ca/findings.php
The Lived Experience Network: Exchanging Knowledge, Partnering for Change
Hello Lived Experience Advisory Participants,
So much has been happening with the Lived Experience Network - both throughout South Eastern Ontario and across the whole province.
Throughout the summer months our online live chats and discussion forums have given us the opportunity to provide our feedback to Health Quality Ontario regarding the caregiver/partner education needs and issues surrounding language and dementia. We've also participated in a research project with the Canadian Dementia Priority Setting Partnership and had great conversations about navigating the health care system.
As you will see on our Resource Exchange page, there have also been rich face to face conversations taking place that have provided great feedback - exchanging knowledge to inform change.
Thank you for your feedback and participation!!!
Just around the corner is our next SE Ontario Live Chat Event.
The next SE Ontario chat will be Tuesday, September 6th from 6:30-8PM. See below for topic information.
HOW TO CHAT? Visit http://dementiacrossroads.ca/chat.php . Once you have signed up for the page, then just click the link that says: log in at chat time.
SE Ontario Lived Experience Cafe September Topic for Live (typed) chat:
Because so many of our participants were on holidays in July, we will be repeating the theme on respite. September's topic comes out of conversations with partners in the Champlain Dementia Network and Behavioural Support Services Providence Care Senior’s Mental Health about respite.
Respite is something offered to older adults that enable them to stay in their homes longer. For some this is in-home supports, short term or overnight stays or adult day programs. But, what does Respite mean to you? What is working well and what could be improved to truly give you the “rest” and assistance you need? Don’t be afraid to think outside the box.
Looking forward to hearing your ideas.
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