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June and July 2017 Resource Exchange - Conversation Summaries

 

Find out what mattered to those living with dementia and their family/care partners living in SE Ontario based on our discussions in June and July 2017. Click the link below to the SE Lived Experience Resource Exchange and spread the word!:

http://dementiacrossroads.ca/discussion-archives.php?postID=65&article=June-July-2017-Resource-Exchange-Findings

For more information about the SE Ontario Lived Experience Network, email Sharon Osvald, Lived Experience Facilitator at sosvald@alzking.com.

Hope you are enjoying your summer!

~Sharon 

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Summer Update

 

I hope you have been able to enjoy some sunshine. I want to inform you about some things that will be happening over the summer.

Live (Typed) Chat Summer Break: There will not any South Eastern Ontario (or provincial) live (typed) chat events in July and August. Many of you are taking holidays, so we have decided to break for the summer. We will resume on Tuesday, September 5, 2017 with a live (typed) chat on dementiacrossroads.ca from 6:30-8:00pm. (Topic to Be Announced.) If any of you would like to participate in a provincial video/teleconference, we will be meeting on Tuesday, July 25, 2017 from 12:30- 2:00pm. Check the Ontario page on dementiacrossroads.ca or email me for more information. Remember, if online “chats” are not for you, you can always email your lived experience input or give me a call at 613-475-9943.

Vacation: Please note I will be on vacation starting next week, from July 3- July 21, 2017 and will be back in the office on Monday, July 24, 2017. If you need to contact me, please send an email and I will reply as soon as I return.

In Your Area: Please check the website calendar to see when I will be in your area. So far, I have plans to visit Brighton, Perth and Bancroft in the coming months. It would be great to see you in person.

Wishing you all have a safe and wonderful summer!

~ Sharon Osvald, Lived Experience Facilitator

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More June News!

Hello Lived Experience Advisors,

I just want to mention two more items:

1. The Lived Experience Resource Exchange for April and May 2017 is ready & online at http://dementiacrossroads.ca/discussion-archives.php . This is a summary of all of the key findings of all the online, face to face and telephone conversations that have taken place with the SE Ontario Lived Experience Network for this two month period. Find out what matters to people who matter!

2. Please be aware of a very important Provincial Live (typed) Chat conversation that will be taking place. On Wednesday, June 21st from 6:30 -8:00PM, we will be holding a province-wide online (typed) chat on www.dementiacrossroads.ca as a part of the Behavioural Supports Ontario (BSO) Provincial Lived Experience Advisory.

The topic for our chat conversation will be focusing on Adult Day Programs and we will be joined by special guest Michael Campo (Senior Policy Advisor) from the Ministry of Health & Long-Term Care. As you may know, the Ontario Dementia Strategy has made Dementia Day and Evening Programs a key area of investment in their strategy. In our past advisory conversations, we have heard a lot of positive feedback from people with lived experience about the value of these kinds of programs. For example, in our May Lived Experience video/teleconference meeting, members shared insightful communication strategies that are used between Adult Day Program staff and family care partners/caregivers such as communication binders and living diaries. The purpose of this chat will be to learn more about what’s working well in adult day programs and what barriers may need to be addressed to enhance the programs. 

More specifically, we will be asking the following questions:

1.What elements make an adult day program successful?

2.What barriers or challenges have you faced in accessing adult day programs?

3.What services are not currently offered within adult day programs, but should be?

4.What advice would you give to policy makers to enhance access to or enhance the impact of adult day programs in your community?

What an amazing opportunity this is to share our lived experiences with those who will be planning these kind of programs! We hope you will join us and look forward to your feedback.

 

Kind Regards,

Sharon Osvald, Lived Experience Facilitator (South Eastern Ontario and Behavioural Suppports Ontario)

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June 2017 Lived Experience News

Hello SE Ontario Lived Experience Advisors,

 

Did I mention how proud I am of the work of the SE Ontario Lived Experience Network?  I am very proud! Check out these two additions to dementiacrossroads.ca - “Lived Experience Network Report April 2017” on the Resource Exchange page and “All Chat Topic Summaries Mar 2014- Present” on the chat page. These documents display a great deal of amazing work has happened both this year and since the Lived Experience Network began in 2013. Please have a look and thank you for your involvement exchanging your knowledge and partnering for change.

 

Live Chat Reminder: I also want to remind you of next week’s Live Chat June 6, 2017 – Lived Experience Café Live (Typed) Chat on www.dementiacrossroads.ca from 6:30-8:00PM. (See the attached poster for the topic and details…including our special guest Maia (bluebird). This is going to be a really special chat so I hope you join in. Many of you will be familiar with Maia (Bluebird) from In My Shoes workshops and our online chats. She was our first lived experience advisor to join in 2013 and will be co-facilitating and sharing some of the things that helped her to cope as a wife and care partner of someone living with dementia. Come prepared to learn and to share some of your coping tips and “What Keeps You Going?”

 

And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain: When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” Haruki Murakami

 

Remember, if online “chats” are not for you, you can still participate in answering the attached questions by emailing your  input or by giving me a call at 613-475-9943.

Please sign up for Meet Me in the Middle Lunch – Tuesday, June 27th: We have had some positive responses from people and will be planning to hold a “Meet Me in the Middle” lunch on Tuesday, June 27th at Minos Village Restaurant on 2762 Princess Street, Kingston, Ontario at 12 noon. The goal of this event is to simply meet others (some who you may have met online but not in person) for some conversation and fun. Each person will be responsible to pay for their own lunch. If you would like to come, please email or phone me by: Monday, June 12th.

Also, be sure to check the Ontario page on dementiacrossroads.ca for information about how you can participate in Provincial conversations too. Looking forward to hearing your thoughts and suggestions for change.

Kind Regards,

 

Sharon Osvald
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

www.dementiacrossroads.ca

Email: sosvald@alzking.com

Exchanging Knowledge, Partnering for Change

 

 

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February/March Lived Experience Findings are Posted!

 

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:

http://dementiacrossroads.ca/findings.php

 

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 sosvald@alzking.com.

 

Find out what matters to people who matter!

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April 2017 Lived Experience News

 

 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.

  1. 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.

  1. 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.

  1. 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!

With thanks,

Sharon Osvald
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

www.dementiacrossroads.ca

Email: sosvald@alzking.com
Home office: 613-475-9943

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Provincial News - How the Lived Experience Began and Where We are Today?

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 sosvald@alzking.com or reach me by phone me at 613-475-9943.

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December 2016- January 2017 Resource Exchange Summaries

 
 

December/January Lived Experience

Findings- Resource Exchange

If you haven't already checked, please note that the summaries of all conversations with the SE Ontario Lived Experience Network for December 2016 and January 2017 are now posted on:
 http://dementiacrossroads.ca/findings.php 

 

This Lived Experience Resource Exchange for December 2016 – January 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 involved input from 36 older adults from across all of South Eastern Ontario. Thirty-four people were spouses, adult children, family or friends and two people were older adults living with a dementia, mental health or other neurological disorders. 

Find out what matters to people who matter! 

Visit http://dementiacrossroads.ca/findings.php 

AN Invitation to SE Ontario health care planners and providers:

Being part of The Lived Experience Resource Exchange simply means that you are willing to receive and read bi-monthly emails from Sharon Osvald, directing you to our "Resource Exchange" Findings Page - which includes a summary of the themes from conversations that took place with participants of the SE Ontario Lived Experience Network. Information will be as general as possible and no names will be shared of either lived experience persons, organizations or staff members.
 


What is your role?

Our request: If you read something that you feel pertains to your organization or service that you will share that information as you feel is appropriate. We also invite you to share specific questions you may have for our network to discuss at our live chat events.

It is our hope that this information will be useful to you as you plan, provide and evaluate services.The goal of the Lived Experience is: Exchanging Knowledge, Partnering (with you) for Change! The Live Experience Network is not a complaints department, rather a resource with real people who want to share their experiences - both good and bad - so we know what is needed.
Thank you for your partnership,
 

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

 

 
 
 
 

 

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January 2017 SE Ontario Live Chat Invitation

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

  1.  What elements make an assessment respectful and supportive to the person (and family/care partner) as well as thorough and accurate?
  2. What are some practical suggestions for how assessments could be done differently?
  3. 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.

 

With thanks,

Sharon Osvald
Lived Experience Network Coordinator

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

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October/November Lived Experience Findings- Resource Exchange

If you haven't already checked, please note that the summaries of all conversations with the SE Ontario Lived Experience Network for October and November 2016 are now posted on:
 http://dementiacrossroads.ca/findings.php 

 

This Lived Experience Resource Exchange for October and November 2016 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from forty-seven people from across all of South Eastern Ontario. Thirty-seven people were spouses, adult children, family or friends and ten people were older adults living with a dementia, mental health or other neurological disorders. 

Find out what matters to people who matter! 

Visit http://dementiacrossroads.ca/findings.php 

AN Invitation to SE Ontario health care planners and providers:

Being part of The Lived Experience Resource Exchange simply means that you are willing to receive and read bi-monthly emails from Sharon Osvald, directing you to our "Resource Exchange" Findings Page - which includes a summary of the themes from conversations that took place with participants of the SE Ontario Lived Experience Network. Information will be as general as possible and no names will be shared of either lived experience persons, organizations or staff members.

 


What is your role?

Our request: If you read something that you feel pertains to your organization or service that you will share that information as you feel is appropriate. We also invite you to share specific questions you may have for our network to discuss at our live chat events.

It is our hope that this information will be useful to you as you plan, provide and evaluate services.The goal of the Lived Experience is: Exchanging Knowledge, Partnering (with you) for Change! The Live Experience Network is not a complaints department, rather a resource with real people who want to share their experiences - both good and bad - so we know what is needed.
Thank you for your partnership,

 

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

 

 
 
 
 

 

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SE Ontario December 2016 Update

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

THE TOPIC?

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!


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 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 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. 

Kind Regards,

Sharon Osvald

Exchanging Knowledge, Partnering for Change

 

 
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November News - SE Ontario Live Chat and Visits

 

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

THE TOPIC?

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 sosvald@alzking.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.

Kind Regards,

Sharon Osvald

Exchanging Knowledge, Partnering for Change

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