Welcome to the Lived Experience Cafe ChatOne of the most exciting features of the Lived Experience Cafe is the opportunity for us to have Live (typed) Chat Events. The Lived Experience Cafe has monthly live chats for participants from SE Ontario as well as bi-monthly province wide chats. See below for times and topics.
HOW DO I JOIN A CHAT? First join our community by clicking the "SIGN UP" tab. Fill in your information. Whatever username you choose will be what is displayed in the chat room. Feel free to use your real name or a nick name - whatever makes you comfortable. You will only need to sign in once. After that, To join in the conversation, just before the chat time go to dementiacrossroads.ca, click on the tab that says "CHAT" and then on the link that says LOGIN HERE AT TIME OF SESSION. You will be asked your username and password again (so be sure to write it down) This will take you right to the chat room.
SIGNUP TODAY to get your login account. (You only have to do this once, after that to join just click the login here link).
LOGIN HERE at the time of the session.
If you have any problems logging on or posting a message, please email email@example.com.
I have made every effort to keep this as simple and user friendly as possible. You may use your real name or a nick name if you prefer to be anonymous. I hope you’ll join in. We also invite you to leave your comments on our discussion boards at www.dementiacrossroads.ca. Findings of these chats will not be archived, but summarized and shared as appropriate, without using names or locations to protect the privacy of the participants.
OUR NEXT LIVE CHAT EVENT WILL BE: SE Ontario LIVE CHAT SESSION IS: Evening SE Ontario Chats will take place every first Tuesday of the month from 7:00-8:30PM.
Our next SE Ontario chat date will be Tuesday, June 5, 2018 from 7:00-8:30 PM. If you are unable to attend the live chat event but would still like to pass along your answers, please email Sharon Osvald at firstname.lastname@example.org
LOGIN HERE at the time of the session.
TOPIC: SE Ontario Live (Typed) Chat: TO BE ANNOUNCED.
PROVINCIAL LIVE CHAT SESSION IS: Province-wide live chats will take place every other month on the third Wednesday from 6:30-8PM. (August, October, December, February, April and June). The next Provincial Live Chat will be Wednesday, June 20, 2018 from 7:00-8:30PM. See the Ontario page for more information.
LOGIN HERE at the time of the session.
TOPIC: See Ontario Page for more information
For more information about how to take part in one our monthly Behavioural Supports Ontario Provincial Lived Experience Advisory, visit the Ontario page.
Lived Experience Network Live Chat Topic Summaries March 2014 – Present
March 2014 : First Chat – Totally open topic. Themes that surfaced were the need for consistency in care for both the person living with dementia, but also navigationally for the family members. Long waiting lists for short term respite and the gaps in services for people under 65 were some of the most common themes.
April 2014 Topic: What are your biggest issues when trying to navigate care and what are your suggestions for change?” (AM and PM Chats)
May 2014 - There was no Live Chat in May 2014 as I was preparing the Lived Experience Report (submitted to leadership in June).
June 2014 Topic: Question posed by Dr. LeClair and BSS leadership- What are your experiences with giving informed consent and being the substitute decision makers for your parents? With all the talk in the news about nursing homes just drugging up seniors with anti-psychotics and their care partners not feeling informed enough to give proper consents...what has your experience been?
July 2014 Topic: What issue is affecting you as a care partner and have there been any changes you’d like to share?
August 2014: No Live Chat – Vacation
September 2014 Topic: Next month I have been invited to share the perspective of the lived experience network to a group of family health team partners. Come prepared to share what you think would be helpful for doctors and their staff to know about people with dementia and their partners in care.
October 2014 Topic: Our theme this month comes from a question sent by a local Family Health Team. We will be discussing this question: "From a physician's point of view, what can we do to help prepare a person (and their family/ partners in care) to enter long term care? (Summaries of this chat were sent to the Loyalist Family Health Team).
November 2014 Topic: Several members of the Lived Experience Network were invited to be part of working groups for the creation of a Behavioural Support Transition Unit that will help people dealing with responsive behaviours across the South East area. I have been asked to talk to you about tonight's topic from that working group...and get your feedback:This month’s topic comes out of the working groups I have been part of planning the Behavioural Support Transition unit. The questions they have proposed are: "If your spouse/parent needed to go somewhere for several months to receive care, (either in hospital, short term respite, Providence Care, or a special unit treating those living with responsive behaviours), What would be your greatest anxieties? What would keep you up at night? What would you need to know and when? And what would you need to feel really supported – even exceed your expectations?” (Summaries of our conversations were emailed to Terry Holland and Adrienne Bell Smith as requested).
December 2014 Topic: This month we will be talking about one of the six findings from our 2014 Lived Experience Conversations project: Dignity, the ways you have seen it displayed and not displayed in your dementia journey and why it matters?
January 2015 Topic: This month, our question comes from professionals from the Quality, Patient Safety and Interprofessional Practice at Quinte Health Care: " When it comes to language, are there terms, phrases or language that you find insensitive or frustrating to you as persons and families living with dementia and similar diagnoses. What are some positive examples or alternatives that you would prefer?" (Summaries of our conversations were emailed to Terry Holland and Adrienne Bell Smith as requested).
February 2015 Topic: This month our topic comes from one of the Psychogeriatric Resource Consultants: “Based on your lived experience moving through the health care system, How Can Transitions be Improved?”
March 2015 Topic: Our topic was about Family Dynamics: “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?”
April 2015 Topic: Our 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.
May 2015 Topic: Our topic was: Please 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?
June 2015 Topic: Our topic came from Dr. Ken LeClair of Behavioural Support Services, Providence Care and was about being an active participant in your health care.“When you consider your experiences with the different medical doctors providing care (family physicians, medical doctors in hospital, long term care or geriatric psychiatry) – what approaches did they use that enabled you to be an active participant and in the health care of your dependent? What strategies did they take to give you meaningful support that allowed you to be involved in decision making and care? Come prepare to share what worked – and what did not?”
July and August 2015 Topic: Our summer chats will be an open topic – giving you a chance to share where you are at and what matters to you: Tell me a fact ...and I’ll learn. Tell me a truth ...and I’ll believe, Tell me a story ...and it will live in my heart… Forever.”
September 2015 Topic: Our topic this month came from one of our lived experience network members: “Who you Gonna Call?” as we discuss some of our experiences, difficulties and successes surrounding navigation of care, finding supports and information. Come prepared to share your lived experiences and learn from each other.
October 2015 Topic: Several of our lived experience network members were invited to be part of a Provincial Best Practice Event that included the voice of about 40 lived experience persons - living with dementia or caring for a person with dementia as well as older adults living with addictions, cognitive disorders and mental health. During the panel time, members with lived experience were asked the question: “Describe what “person and family centred care” means to you. Share examples of when you have received this kind of care and when you have not.” That is our question for tonight’s live chat events.
November 2015 Topic: There has been a lot of conversations, workshops and webinars in the health community (the Alzheimer Society of Ontario, The Centre for Studies in Aging and Health and others) surrounding the topic of “What makes a Dementia Friendly Community?” Based on your lived experiences, what do you think would make life more dementia friendly for you and the person you care for? I encourage you to get creative and think outside the box on this one. I believe we will have a very interesting conversation.
December 2015 Topic: The holidays are approaching. This can be a difficult time for families living with dementia and similar diagnoses. Many of you have been care partners for a very long time. As you reflect on your experiences, what are the needs you have (both physical and emotional) that make you the weariest or keep you up at night? How can the health care system help?
January-April 2016 – There was a break in the program.
May 2016 Topic: Tonight’s question 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 illness 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:
- 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?
- What type of supports would need to be in place for you to feel empowered enough to not take that ED visit?
- 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? This month’s topic comes from Behavioural Support Services, Providence Care Seniors Mental Health and has also been part of recent Provincial Lived Experience Network discussions.
June 2016 Topic: This question came from a Psychogeriatric Resource Consultant with Providence Care Seniors Mental Health. When caring for a person with cognitive impairment who cannot clearly communicate their needs and feelings, it is essential that health care providers know that person’s history, family stories, life events, as well as traumatic and joyful moments where there is strong emotional connection.
- What is a reasonable ask for family participation when gathering that information? What are they willing to do?
- If a standardized tool was created to gather that information – what should it look like?
- How do you think this could be shared effectively with health care providers?
July 2016 Topic: This month’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?
August 2016 Topic: Navigation: When you think about your experiences finding and accessing health care, what were the things you wish you knew that you did not know? Where and when did you find the resources you needed and how could that have been improved? (This conversation included participants from across the province in the first Provincial Lived Experience Chat event).
September 2016 Topic: Due to small summer attendance – at the request of the Lived Experience members, we repeated July 2016 Topic. (See above).
October 2016 Topic: This month’s SE Ontario Lived Experience Chat question came out of conversations with the (Long Term Care Home) Behavioural Supports Cooperative of Lanark, Leeds and Grenville. During a discussion about education, the topic of the importance of providing education for family members was raised. “As a family member/care partner of someone living with dementia or similar diagnoses, what are some key educational topics you:
- Would like to see shared with your family council group or at an educational event for family members/ care partners living in Long Term Care or Retirement Homes?
- What would like to see offered to families and care partners who are still living in the community?
- What has been very helpful to you as a care partner?
October 2016 – Several Lived Experience nembers also participated in a province-wide live chat topic: Tonight we welcome and introduce 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 brings with her questions that will inform the creation of a Provincial Dementia Strategy.
1.What would make it easier for people with dementia and their care partners to navigate existing available services and supports? (What might be some examples of well-coordinated care that you’ve observed or experienced?)
2. What existing services or supports are most effective in assisting care partners of people with dementia? (What are some examples of at home services & adult day programs? Why are they effective? What might be the barriers?)
3.What would an ideal dementia-friendly community look like?
November 2016 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:
- When it comes to admissions to Long Term Care, in your opinion: Should people be “bumped” from the crisis list if they go to the Emergency Room? If not, how should it work if people are waiting for Long Term Care in hospital?
- 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.
December 2016 Topic: Most of you became involved in the Lived Experience Network after taking part in a face to face advisory meeting where we had a round table discussion.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. Where are the gaps? What's working well and where do you need more support? We also welcome you to share some of the lessons you've learned along the way that have made things easier.
December 2016 – Several Lived Experience members also participated in a province wide live chat Topic: This question came from the BSO Provincial Coordinating Office. What are the ways that you create meaningful engagement around the holidays when supporting someone living with dementia or mental illness?
- How have your holiday traditions changed/been modified to meet current needs?
- What are some practical tips and strategies that you’ve found to be successful?
- What are some of your key lessons learned and most valued supports during this time?
January 2017 Topic: January’s live chat came out of 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 more 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?
February 2017 Topic: Due to inclement weather and ice storms, several of our participants could not access the internet. As a result we held an “open” theme with the group that was present.
February 2017- Several Lived Experience Members also participated in a province wide chat Topic: Our topic for tonight has come out of many discussions that have happened with the Provincial Lived Experience Network about families/care partners need for practical education and training...not just the professionals. The question is: What Education and/or training do you feel is most helpful for family care partners and people living with dementia, mental illness, substance use and/or a neurological disorder?
March 2017 Topic: February’s SE Ontario Lived Experience Café topic comes from Providence Care Seniors Mental Health and focuses on how to help older adults living with dementia, mental health or substance use or other neurological disorders to be able experience as much independence and choices as possible. One of the challenges that emerge for families and care partners when supporting someone is finding the balance between helping their spouse/parent/friend in a way that minimizes risk and frustration to that person and others and provides good quality care, while at the same time honouring the person’s need to still experience as much independence as they are capable of enjoying. Finding this balance can be so fluid and challenging.
- How do care partners achieve this, what works?
- What help/s would aid care partners in making these decisions together with the person?
- What tips can you share from your lived experience for those who are struggling?
April 2017 Topic: In several of our SE Ontario lived experience advisory conversations both face to face and online the theme of technology has come up several times lately.
- In what ways would technology help/would have helped support you in your role as a care partner either in the home, caring from a distance or after moving to Long Term Care? Where are the gaps and what exists that is helping? Don’t be afraid to think outside the box.
- What are the barriers that exist to getting access to technology that would improve your experience as a caregiver?
April 2017- Several Lived Experience Members also participated in a province wide chat Topic: Our next Provincial Advisory Live (typed) chat will take place on Wednesday, April 19th from 6:30-8PM. Our question comes from a provincial team made up of Dr. Ken LeClair, Pam Hamilton and North East BSO. They are working on a project and that the purpose of that project is to unite Physicians and Clinicians to improve collaborative care in geriatric mental health using the P.I.E.C.E.S. framework. They would like our input as lived experience persons to answer the following:
“When you consider your experiences with the different family physicians and their health care teams providing care, what approaches did they use that enabled you to be an active participant in the health care of yourself or your dependent? What strategies did they take to give you meaningful support that allowed you to be involved in decision making and care? Come prepared to share what worked – and what did not.”
May 2017 Topic: Our May 2017 SE Ontario Live Chat question comes from Providence Care Seniors Mental Health. Last month, all the hospital services of Providence Care moved under one roof into a new hospital building. This was an exciting but huge transition for the patients and residents on Providence Care Seniors Mental Health.
Reflecting on your lived experience, what was the real challenge for you, as a care partner, during the transitions in care of the person you were supporting? From your perspective, what was the most challenging aspect of the transition for the person you supported? For these challenges, what was the problem in your opinion? What would have improved this transition for you and the person you supported? If you or someone you know made the move to the new Providence Care Hospital, what was the experience (positive and negative)?
June 2017 Topic: Supporting someone living with dementia or a similar diagnoses, can be a joyful and fulfilling experience, but it also can be long and difficult. A common question that is asked of families/ care partners is “How do you do it?” and “What keeps you going?” Maia (also known as Bluebird on the lived experience café) was the first member to share her insights with the SE Ontario Lived Experience Network. Since that time, Maia’s experiences have included her husband transitioning from their home, to being cared for in different long term care settings before passing away a little over a year ago.
For this month’s chat, Maia (Bluebird) will be joining us and sharing some of her insights on what helped her to cope and to continue growing and thriving as a person throughout her and her husband’s dementia journey and beyond. Come prepared to learn – and share – what keeps you going in your journey? It is my hope this chat will be encouraging to the participants and will also inform the health care system as we identify things that help families/ care partners to cope and live well.
“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
June 2017 - Several of our Lived Experience members also participated in a Province- Wide Chat. Topic:
Our Chat conversation tonight will be focusing on Adult/Evening Day Programs we will be joined by special guest Michael Campo (Senior Policy Advisor) from the Ministry of Health & Long-Term Care.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?
September 2017 Topic: September’s chat question comes from the South East Local Health Integration Network. Jennifer Payton-Hayward, Director of Sub Region Planning & Integration Rural Hastings, asks:
- “What supports would family/caregivers feel they required in order to sustain their loved ones to stay in their homes longer?
- What was or would the “tipping point” be that meant you can no longer manage caring for them at home?
October 2017 Topic: For our October 3, 2017, chat topic, I would like to discuss the Lived Experience Network and share with you some of the feedback we have received from the health care community through a recent survey as well as ongoing conversations and emails. We’d also like to hear your input about how the this network is impacting you.
Come prepared to share:
- How has your involvement in this advisory network impacted you personally?
- Do you feel your participation in this advisory network has had an impact on the health care system and do you feel more connected and empowered as a result of your involvement? If not, why?
- What things about www.dementiacrossroads.ca and the Lived Experience Café chat events do you find helpful/useful and what things you would like to see changed?
October 2017- Several of our Lived Experience members also participated in a province-wide chat. Topic: Our chat topic comes from Dr. Sarah Mitchell, Assistant Professor, Division of Neurology, Department of Medicine at Sunnybrook Health Science Centre who will be joining us as a special guest to ask the following:
Hospitals are a busy place and it can be difficult to provide personalized care for someone living with a cognitive impairment when they are often unable to communicate their needs.
- What are the elements that make a hospital (acute ) care experience positive for an older adult living with cognitive impairment and their family care partner?
- What barriers exist to providing excellent care in an acute hospital setting for patients with cognitive impairment and their family care partners?
- What could be done to improve the environment and care for patients and their family care partners?
November 2017 Topic: Our November SE Ontario Lived Experience Café (Typed) Chat topic comes from Krystal Mack, Seniors Mental Health Inpatient Program Manager of Hospital Mental Health, Providence Care. In order to better understand the lived experience of family caregivers, she asks:
“How do we improve communication between family caregivers and the health care providers who provide care to their family members/friends?
December 2017 Topic: Last month, one of our Lived Experience Members and I had the opportunity to participate as part of the BSO (Behavioural Supports Ontario) Provincial Coordinating Office Expert Panel for Non- Stigmatizing Language with a Dementia Focus.
This month’s topic is an extension of these expert panel discussions, which really emphasized the issue of ageism in our society as a whole and how that affects the delivery of health care. Ageism is prejudice or discrimination on the basis of a person’s age – specifically against the elderly. It is also a tendency to regard older people as debilitated, unworthy of attention and unsuitable for employment.
Based on your lived experiences, come prepared to share:
- Some of your observations of ageism in our society?
- Any words or saying you feel encourage stigma about dementia or inappropriate beliefs about aging?
- Any experiences you have had or observed with ageism and stigma and how it affects the delivery of health care - particularly for someone living with cognitive impairment?
December 2017 BSO Provincial Chat Topic: One of our lived experience advisory members mentioned she would not be attending December’s live chat because she was experiencing “emotional fatigue” - especially during the holidays. Is anyone else experiencing this as well and how you are coping?
January 2018 Topic: Come prepared to share some the challenges you have been facing in your role as a care partner and also some of the ways you feel supported and even grateful. This is especially timely as we are finishing the holiday season with all the joys and challenges that accompany it.
February 2018 Topic: The South East Local Health Integration Network in interested in improving the coordination of care and communication for patients who go to a primary care physician and also use Home & Community Care services (formerly called Community Care Access Centres – CCAC).
Question: We would like to hear about your experience with moving between primary care (your Doctor and/or Nurse Practitioner) and Home and Community Care. What parts of your care delivery have gone well, and what parts do you believe could be improved to make your experience better?
February 2018 BSO Provincial Chat Topic: Tonight’s topic comes from Dr. David Ryan, Director of Education & Knowledge Processes, Regional Geriatric Program of Toronto, Assistant Professor, Faculty of Medicine at the University of Toronto and Consulting Psychologist at Sunnybrook Health Sciences Center.
The Regional Geriatric Program in Toronto have developed a Senior Friendly Care Framework identifying the “Senior Friendly 7” areas for which intervention would be most beneficial to older adults who are frail or at risk of becoming frail. These seven topics are 1. Cognition/Delirium, 2. Mobility, 3. Nutrition, 4. Polypharmacy, 5. Pain, 6. Continence and 7. Social Engagement.
When reflecting on your own lived experiences in dementia care (as a patient or care partner) in what ways would a routine review of these Senior Friendly 7 Topics be helpful whenever you were connecting with health care systems? When connecting with all your different health care systems, did they routinely review any of these SF7 topics with you? If yes what were the topics and how was it helpful? If no, how would it have been helpful?
March 2018 Topic: Person Centred Care is widely considered to be one of the essential frameworks for caring for a person with Dementia. Recently, the BSO Provincial Lived Experience Advisory has done some tremendous work identifying Personhood tools that can be used to help provide Person Centred Care. However, we know that there are many barriers within our health care system to providing Person Centred Care, especially for people with Dementia. Tonight’s question comes from Kim Schryburt- Brown, Clinical Resource Project Consultant of Seniors Mental Health, Behavioural Support Services Providence Care:
- Have you experienced Person Centred Care, either for yourself or for someone living with Dementia? (Please consider sharing your experiences, how you know it was Person Centred Care, and if this approach helped or hindered the health care provided?)
- If you have not experienced Person Centred Care, is this something that you would be interested in having as part of your health care? Why or why not?
April 2018 Topic: This month's chat topic came out of conversations with different members of this lived experience network, it is called: “If I only knew then what I know now.”As family care partners, most of us are learning about dementia, complex mental health, substance use or other cognitive impairments and the health care system and the supports us as we go along. I often hear people say “If only there were a manual” and “If I only knew then what I know now.”
Come prepared to share the important lessons you have learned – both in times of crisis and just day to day lived experiences – with other family care partners and also to the Health Care System as a whole, so they can be better prepared to support older adults and their families.
April 2018 BSO Chat Topic: Some people develop symptoms of cognitive decline or dementia earlier in their lives (i.e., before the age of 65).
1. How do you think the experience of individuals with early onset dementia and their family care partners would be the same as or different from those who develop symptoms later on?
2. What unique challenges do you see for individuals with early onset dementia and their care partners to access services in your community?
3. Do you think there is a different stigma for this group?
May 2018 Topic:
In April 2017, the Ontario Government announced their Ontario Dementia Strategy with approximately $100 million allocated provincially to support people living with dementia, their care partners and their families have access to the resources and services they need to live as well, and for as long as possible at home and in the community.
In anticipation of each Local Health Integration Network receiving notice of their portion of this provincial funding, the The South East Local Health Integration Network (LHIN) & leaders across the system of care would like to hear the perspective of Lived Experience to ensure system planning aligns with and supports the needs in the community:
- What do you see as the biggest gaps in community services in our region?
- What do you feel would be the most helpful to allow people to live at home safely for as long as possible?
- What are some innovative services, supports, programs or approaches that you are aware of that should be considered to help people living with dementia and their families?