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October/November 2017 Resource Exchange - Conversation Summaries

October - November 2017 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for October - November 2017 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 67 people from across all of South Eastern Ontario. 61 people were spouses, adult children, family or friends and 6 people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in October - November 2017 happened through phone calls, face to face meetings, one Province-wide Lived Experience Café themed live chat and two SE Ontario Lived Experience Café live chat that took place on . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

October - November Resource Exchange – SE Ontario Lived Experience Network 

October - November 2017 Face to Face Advisory Conversation Summaries:

Supports That Helped:

  • “My wife is in the right Long Term Care Home for her. It was the best decision we made. It is just what she needs and the laughter is back.”
  • “I’m fortunate to have great support from family and grandchildren living nearby that are always willing and able to help. I don’t know how people manage without that.”
  • “I am glad we have opportunities like the Lived Experience Network to get this message out. People living with dementia need to tell their stories and what they need.”
  • “I learned more from the Alzheimer Society and the Men’s caregiver support group than anything else.”
  • “Our church has an Alzheimer tea where the youth serve and there is music and a speaker. That is very helpful.”
  • “Via Rail will offer free trip you a free trip if you are accompanying someone who needs support. You just have to get your doctor to fill out a form.”
  • “The Alzheimer Society here in the city has done some good things for younger people living with dementia and their families – like having us meet for a pub night/support group!”
  • “We have received great support all the way through from home to long term care. We had the same PSW staff, our care coordinator was always available and supportive and the transition to long term care has been very smooth. We’ve been very fortunate.”
  • "Things are good for caregivers at our long term care home, they run bazaars and music programs and keep us involved."
  • "My family doctor was very informed. When he didn't have the answers he knew where to send me to get them. It made all the difference in our experiences."
  • "The nursing home takes the time to make sure my wife has things to do that give her a sense of purpose and meaning. If anything occurs they are right on top of it and they call you right away."
  • "I am very impressed with our LTC home. They are always looking for solutions for people living with dementia who struggle. The schedules are becoming less rigid and more accommodating and try to involve families in the decision making."
  • "I love that we can Skype, Face Time etc. and that the activation staff arrange time to make this happen."


  • Home supports are something that we need…more than 6 hours. Unfortunately, that’s just not enough to meet our needs.”
  • “We definitely need more short term respite beds. I’ve been driving my husband from Kingston to Ottawa and that is so hard on both of us.”
  • Hospitals need a lot of help in caring better for people living with dementia. First of all, you have to literally fight to keep them from sending them home before either one of you is ready. Secondly, the environment is so chaotic and stressful. It is not patient-first. My wife was in emergency for four nights and changed beds 9 times in the hospital. There needs to be changes and funding provided to hospitals to change this.”  * This was a common theme that came up with people, especially regarding situations, stress and challenges of being sent home before they felt prepared.”
  • Navigation is still a problem. There needs to be a better point of contact. You get lost in the navigation, re-telling your story, overwhelmed by information but are not physically managed. People (from the same organization) tell you different things. Who do we trust?”
  • “My husband is young and there are no supports for us. They’re not being preventative or proactive – but reactive. I am scared of what is to come for us.”
  • “I am not clear on how a person qualifies for services. What standard is being applied? I think it should be based on the caregiver’s needs too – not just the person’s. Not everyone can handle the same amount of stress and responsibility.”
  • “It would be great if there was even a hotline you could call on the weekend, just to talk you through AND weekend respite too.”
  • “I wish we qualified for something like the SMILE program because we need, but we are too young.”
  • “There is a desperate need for Respite Beds. I think we need to find ways to start thinking outside the box and the system. People are out there struggling on their own.”
  • Family dynamics can such a challenge. It is just exhausting when you are already exhausted just from being a caregiver.”
  • “We need caregiver support groups in other parts of the city closer to people’s neighbourhoods. People need education and support.”
  • “Having a good family practitioner really makes or breaks it. I had a hard time finding a G.P. which made getting a diagnosis a challenge.”
  • “We need a stand-alone Assessment Centre here in the city. Services are fragmented and not connected to one another. We need a Memory Centre – just like a Cancer Centre.”
  • “We had such a difficult time getting my mother’s family doctor to take her changes seriously. We had to go to a walk-in clinic to get a referral to Psychogeriatric care.”
  • “Being younger is so tough. I’m still working; kids are at home, where do you go? What do you do?”
  • “I want to listen to Pearl Jam not Lawrence Welk. I don’t exactly fit in with the Adult Day crowd.”
  • “Younger adult children need a support groups and help too.”
  • *People shared stories of some of the challenges of living in long term care (i.e. a spouse being pushed by another resident and breaking their hip, other residents crawling into their beds etc.) however, spouses felt staff were caring, empathetic and creative in finding solutions to the issues that come up with living in long term care.
  • “Transportation is so crazy expensive. It cost $135.00 to get my wife from the hospital just a few blocks away. What are you going to do?”
  • *A few of the spouses had experienced the challenge of being audited when their spouse went to Long Term Care. Apparently, this was a tiring and difficult process that had them running around multiple places trying to get the right paper work having to prove their spouse was living in Long Term Care. All felt this experience had been unnecessary and not supportive. "Like,I just had my life tip on its head and that was the last EXTRA thing I needed to deal with at the time."
  • "One of the challenges we have faced is follow up. We get in have an appointment with the specialists or Psychogeriatric services  and then we are sort of left to fumble through. It would be nice to sense they are managing our care."
  • "I feel a little lost in it all. There is no coordination of all the various parties responsible for my wife's care. It is hard to keep on top of everything."
  • "Guilt and Grief ...those are the things that really can make me crumble."
  • "My husband was someone who lived outside. He worked outside, hunted, was active and loved nature. I hate that he hardly ever gets to go outside. I think that is something that a more conscious effort should be made to get people out into the sunshine. It breaks my heart to see him sitting there on a beautiful day."
  • "My husband was turned down five times for long term care before he passed away. This was such a difficult and exhausting time for the family. " 
  • *Couple shared they were part of clinical drug trials but that there was significant costs that were not subsidized which was causing some financial strain.

October 3, 2017 Live Chat Summary – SE Ontario Lived Experience Network 

Quality Improvement Discussion Findings

 OCTOBER 2017 SE Ontario Live Chat Topic:

A lot has happened since the SE Ontario Lived Experience Network began in September 2013, followed by the launch of the online Lived Experience Café community on and our first live (typed) chat event on March 2014.

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 this network is impacting you.

Come prepared to share:

  1. How has your involvement in this advisory network impacted you personally?
  2. 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?
  3. What things about and the Lived Experience Café chat events do you find helpful/useful and what things you would like to see changed?

Key Findings:



The Dependency of the Lived Experience Network on Computer Technology:

  • “I wish more of my day program clients would look in to the lived experience network but many of the families struggle with computer issues or don't have computers at all.”
  • “Yes it can be a challenge in terms of computer access! I am living the journey and I work in the system. It does amaze me how many people do have computers and computer skills and at the same time know there is a void.”

Possible Solutions: Grow opportunities for Face To Face Advisory/Round Table Conversations:

  • “One of the ways the Lived Experience Network reaches out to older adults is through technology and computer. We realize that this is only part of our network.  There are also phone calls and face to face advisory visits/round table meetings with Sharon Osvald at different Alzheimer Society groups, Family Councils and public groups.
  •  A suggestion would be to grow these meetings to include more people and their family care partners living with dementia and similar diagnoses through their community groups.
  • “A suggestion: I have heard recently that church congregations that want to support their aging members are at a loss as how to help with dementia”
  • “The round table talks are also very effective! It is great to be able to connect with people in various ways, that way we improve access to peoples' stories throughout different parts of the journey! Face to face; telephone; email; lived experience café!”
  • “I think the face to face meetings might produce more chat participants…I get a lot of hesitancy when I talk to fellow caregivers about coming to online chats.” (Building face to face relationships might help with that barrier.)
  • “Family Councils at LTC homes might be interested as long as they understand it is anonymous.”
  • Adult Day Programs and their folks would be a good connection – as well as hospitals and even the SE LHIN.”

Lived Experience Café Discussion Forum/ Time of Chat/ Information Sharing and Chat Page Format:

Concerns: Discussion Forum

“I love gaining new ideas, and hearing the perspectives of others and had hopes that the online discussion forum would become something greater than it is. (There is not real back and forth discussion or sharing of thoughts) Maybe it is not the right venue. Maybe the Alzheimer society should offer more of an online discussion forum on its site?”

  • “The discussion board/forum gets READ really regularly but hardly ever USED. I am not sure how to revive it or if it needs to be revived? Even provincially it just hasn't taken off.”
  • “I see many, many board forums on a wide range of topics that don't get a lot of activity. I think it has to be at the top of the Google list to get much action.”
  • “I would really like to see the Discussion Board being used more! It would be cool to have questions posed or discussions started and people can add to the thread at their leisure; share articles; resources etc.”

Information Sharing

  • Sometimes during our live chats, participants put up something, a resource, contact or link but I don't get it. Is there a place on the website these can be placed so I can access those later?”

Chat Room and Website Format:

  • “I wish I could have a larger window to view the responses because as everyone is inputting I have to keep scrolling up to see what is being said.”
  • “Yes, this is true for me as well.”
  • “The rotating banners on the home page of the website move too quickly. I can’t read what is said before it moves to the next one.”

Start Time of Chat:

  • “When I get home late from work; then make dinner for my mother-in-law, I am often too late to attend any chat. Today I was lucky and got home at a decent time to attend the chat!”
  • “I think it's still dinner time for people. For me later is better, but I’d think a lot of folks are just getting home at that time or just sitting down to dinner.”
  • “Try 7PM.”
  •  “I say yes to 7pm!”

Potential Solutions:

  • Discussion Board: Try to use to discussion board more to share articles and hopefully build discussion. Tie the discussion forum comments to activity on the social media pages. That might bring people to the page.
  • Share information links that are shared during chats on the Discussion Forum board. This will be a consistent place to find information and will also develop chat topics and drive traffic to the forum.
  • Chat Room Format: The website provider was contacted and informed me there is a way to make the chat box larger. At the bottom of the chat box is an icon of two little people. If you click on that, it will close the window at the right side (that shows the names of everyone present) and will make your actual chat box about 25% larger.
  • Website Banners: The rotating banners were changed from changing every five seconds to every ten. Also, if you hover your mouse over the banner it will not change until you move the mouse away.
  • Time of day – We moved out SE Ontario and Provincial Lived Experience Advisory Live Chat times from 6:30-8:00pm TO 7:00-8:30PM.

How the SE Ontario Lived Experience Network Has Impacted their Members:

  • “What I really appreciate that questions are posed to the Lived Experience Network and that these questions come from many people in the different parts of the system to the Lived Experience Café. The most recent was the LHIN asked what I thought the "tipping point" was for caregivers and we got great feedback. This I think will help in the planning and design of the system in the future.”
  • “The most exciting part is having a direct audience with someone who is asking..."What do you need and how can we improve things?" I know we can't perform miracles, but I think we can make a difference.”
  • “People always say they like reading the quotes knowing they were a "real person's" thoughts and words. That carries its own weight.”
  • “Participation has taken me from victim to productive...sounds harsh...but I feel the questions ask provoke in me the responses that needed to be heard without the tone of my voice, my body language or the tears in my eyes.”
  • “The chat format gives you moment to think as you are pecking out your response and gives you a moment to review it before you submit.”
  • “Agreed, the chat allows you to 1. Have a chance to see how what you’ve said is received and 2. Amend it if you weren’t clearly understood.”
  • “I look forward to hearing your side of things and ALL the great things that you do.”
  • “I love that the program offers the fact that I can email you vs chat.”
  • “I love that I can review the topics and the proof that the topics are "going somewhere" simply by reviewing the dementia crossroads page. The (Resource Exchange) ARCHIVES section reassures me that progress is being made!”
  • “I hope my info proves helpful in some way. I recall the first times we chatted and you were one of the first people who truly "heard" me and I thank you for that.”

Suggestions for Other Ways to Build Advisory Conversations:

Using Art Based Techniques to create conversations:

  • “I like the idea of doing collage workshops so you can display the pics for all to see and create conversations around them.”
  • “A vision board is a good idea. There is an art program for caregivers happening in Perth right now and I understand some are really benefitting from it. I wonder if it would help them tell their advisory stories?”
  • “That could be a powerful modality…I have heard of “art based research” perhaps a future idea would be to use art as therapy and a research tool.”

Benefits of Typed Chat Format:

  • Feedback from people who had used both Zoom and this typed chat was that ZOOM was better for conversations where people are brainstorming overall projects, sharing resources and planning but they preferred the (typed) Live Chat format for answering specific questions since they could write down their exact thoughts and share them in their own words.
  • Participants like that since it was evening and they were often caring for a loved one at the same time, they could be at their computer while caregiving without their spouse/parent/friend being stressed out or suspicious about what they were talking about.
  • People who were a bit more timid and not as outspoken felt they had a chance to be “heard” with this format.
  • “One thing to consider with Zoom is the difference in time. With typing, many can speak at once and not lose a train of thought whereas Zoom, you have to wait your turn to speak.”
  • “The other benefit to the typed chat is getting down people's "exact" words in the chat format.”
  • “I like the typed chat because I can multitask. My mother-in-law is here for dinner every night, when I go on the chat I can fake it and she thinks I am doing work and at the same time I carry on a conversation with her.”
  • “But, let’s still be sure to have the occasional "Meet Me in Middle" face to face meeting … our Kingston luncheons?”
  • “The luncheons are a yearly delight.”


 The SE Lived Experience Network 2017 Survey Results – Who we Asked, What We Asked and What We Learned

In June 2017, a survey was sent out to 200+ health care service providers who are connected with the SE Ontario Lived Experience Network and receive our “Resource Exchange” Report. The Resource Exchange is a bi-monthly summary of the key themes that surfaced through lived experience face to face and online conversations during the past two months). Participants represent staff from all the Long Term Care Homes in the South East region, representatives from Home and Community Care (formerly the CCAC), the Alzheimer Societies of SE Ontario, Von, the Smile Program, the SE LHIN, Adult Day Programs, various Family Health Teams and Family physicians, Regional hospitals, Providence Care and more.

What We Asked?

When you reflect on the learnings shared from participants of the SE Ontario Lived Experience Network received at meetings and/ or by reading the Lived Experience Resource Exchange on

  1. Is the information you have read /heard useful?


91.7% YES

4.2% No

4.2% Not Applicable

  1. Is the information applicable to the work you do?


87.5% YES

12.5% No

  1. Please share example/s of how this information has impacted or informed the work you do?


  1. “The information we received from the SE Ontario Lived Experience Network has helped us in establishing “Experience Based Design Models” for Program Improvement which includes the patient’s story.”
  2. “It has helped us in learning how regulations affect how we deliver care.”
  3. “It is good and necessary for us as health care providers to hear how our clients and families perceive what it is we do and how we do it. Not saying it is always easy to read the negative experiences people have had, but the feedback always makes me think and reflect.”
  4. “The feedback from the SE Ontario Lived Experience Network has helped inform training opportunities and/or resources that I wouldn’t know otherwise.”
  5. “This information has given me understanding of the support that is out there for families in the community. We mention this learning to the families who are here and encourage that they tap into all of the information on the website and discussions.”
  6. “I have been able to share the Lived Experience Network with our Family Council, giving them an outlet for caregivers experiencing stress.”
  7. “Instilled a greater understanding of what challenges families face. This has allowed us to adopt new approaches in order to facilitate a smoother transition.”
  8. “Comments from the questions posed about system navigation echo my experiences as a health care provider. I try to be more cognizant of how I can make things easier for the people I serve.”
  9. “The information we have learned from the SE Ontario Lived Experience Network assisted us in changing our care delivery to a primary care model.”
  10. “It is always good and helpful to hear the perspective of the clients and people we service in health care.”
  11. “The findings of the Lived Experience Network assisted us in the development of an in house Behavioural Supports Ontario program framework.”
  12. “This information validates where we are in relation to other homes.

In Summary: The SE Ontario Lived Experience Network findings have helped:

  1. In the development of quality improvement projects i.e. improving transitions, changing their type of care model.
  2. To inform staff and volunteer training and education.
  3. The Lived Experience Network is a resource that gets passed along to their clients and families.
  4. Used the feedback of the Lived Experience to develop an in-house Behavioural Supports Ontario program framework.
  5. Provides feedback about what other organizations are doing to help them to understand their needs and strengths, as well as informed them of resources that exists for their clients they were not aware of.
  6. Creates understanding and builds empathy and compassion in those who serve clients and   families in our area.
  7. * The Lived Experience Resource Exchange is posted on for all to view. This information has been used (with our permission) for various research and education initiatives across the province supporting the development of the Provincial Dementia Strategy, several University research projects, hospital education days and more.


October Province Wide Live Chat Summary:

Behavioural Supports Ontario Provincial Lived Experience Network Advisory

Feedback: Hospital/Acute Care Experiences in collaboration with Dr. Sara Mitchell, Assistant Professor, Division of Neurology, Department of Medicine, Sunnybrook Hospital


The purpose of the Behavioural Supports Ontario (BSO) Provincial Lived Experience Advisory is to join voices from across the province to establish a provincial advisory network of individuals with lived experience. The Advisory also guides BSO projects and participates in an accessible virtual platform to connect people through shared experiences. Lived experience, in the context of BSO, refers to the experience of living with dementia, mental illness, substance use and/or neurological disorders or the experience of being a care partner with an individual living with one or more of these conditions. Examples of care partners may include family members, friends, etc., who play or played an active role in supporting an individual living with one or more of the above conditions emotionally and/or physically.

The BSO Provincial Lived Experience Advisory is co-chaired by Sharon Osvald, Lived Experience Facilitator for the BSO Provincial Coordinating Office and Rhonda Feldman, Mental Health Clinician with the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training.

The October 2017 live (typed) chat discussion question asked to the Advisory was regarding (acute) hospital care experiences for older adults living with cognitive impairment and their family care partners. Special guest Dr. Sara Mitchell, Sunnybrook Hospital join us with tailored discussion questions. Fourteen people participated in the live chat discussion and two people submitted their answers by email or phone. The following communities were represented: Kapuskasing, Cloyne, Trenton, Sudbury, Brighton, Toronto, Mississauga, Kingston, Whitby and Chatham.

The questions were:

“Hospitals are a busy place and it can be difficult to provide personalized care for someone living with cognitive impairment when they are often unable to communicate their needs.

  1. What are the elements that make a hospital (acute) care experience positive for an older adult living cognitive impairment and their family care partners?
  2. What barriers exist to providing excellent care in an acute hospital setting for patients with cognitive impairment and their family care partners?
  3. What could be done to improve the environment and care for patients and their family care partners


As a result of the discussions, key themes emerged:

• The need for family care partner support and clear lines of communication, especially during the stress and guilt experienced when making difficult choices as a substitute decision maker.

• Adjusting the hospital environment, design and pace to make it more dementia friendly.

• Identifying and flagging cognitive impairment in ER and developing a plan of care earlier as well as providing training, coaching and support to families, staff and volunteers.

• Personalized Care, Dignity and Respect; never sending a person with cognitive impairment to ED alone without an advocate or substitute decision maker.

A more detailed review of the themes that emerged is provided in the sections following:

  1. What are the elements that make a hospital (acute) care experience positive for an older adult living with cognitive impairment and their family care partners?

Key Findings:

Family Caregiver Supports and Clear Lines of Communication When Making Difficult Decisions:

  • “My lived experience was with my mother. I had to make the very difficult decision about surgery to prolong her life when she lost her ability to swallow but had advanced dementia.  I was faced with gastric surgery for a feeding tube and the decision of whether decision as to whether this would improve her quality of life. It was an agonizing decision and a process. When the geriatrician explained what was necessary and I was so aware of the decision I faced, he simply said it was a family decision. I would have liked him to appreciate how difficult this was going to be and the consequence of that decision.”
  • “My husband decided against a feeding tube after thorough consideration. It was still very difficult to see him unable to eat or drink for many days but I knew that was his decision. It must be much harder when the patient isn't able to make that decision.”
  • “I was pleased to have the support of a Physician Assistant on the Neurology floor. She was an advocate and a liaison with the health care team who came and went off shift.”
  • “Our doctor in the ED was amazing. She took me over to see the CT scan on the monitor so I had an easier time knowing that surgery was the way to go. I felt included and respected, and was very comforted by her demeanor. A gem!”


Personalized Care, Dignity and Respect; Never sending a person with cognitive impairment to Emergency Department/Hospital alone without an advocate or substitute decision maker:

  • “The caring is what mattered most - people that took their time with us, said hello, used their name and our names and remembered little things. That personalized stuff - even if it was the laundry staff really made a big difference over the long haul!”
  •  “I took a client to emerg in the last year and was pleasantly surprised by how friendly the nurse was. I think it makes a big difference if they understand and are patient with people.”
  • “I like that the doctor spoke with my husband in terms that allowed him to be part of the decision.”
  • “It is too bad things are so task driven.”
  • “Are we focused on the task or focused on the person? It is unfortunate the pressure is there for staff to get it done not focus on how it is done.”
  • “My husband responded well to being in the sunroom/lounge once he was up on his floor. He got to hear others' stories, enjoy the lake view and nighttime lights. It was nice for staff such as OT and PT to have a place to connect that wasn’t a sick bed.”
  • “As part of the care path, we should include when those with dementia end up in the ED alone. It happens when care partner is also ill, or the person is sent from a Day Program. This can be terrifying and staff are not able to get the best information.”
  • “I can't imagine being in ED and not having my partner/care giver with me!!!”
  • Also, if a person is sent to ED from a LTC home, unless they have family who can accompany them they arrive ALONE with no personal information or anything. It is a terrible thing that should just not happen.”
  •  “Family members have to fight to stay with their loved ones who are often sent off to the waiting room unless they dig their heels in.”
  • “Even when family is available, we cannot ride in the ambulance. I live 30 minutes away from the LTC home where my Mom is. If they reach me right away, I am still 30 minutes behind the ambulance. I have never understood why they cannot send a staff member with my Mom.”
  • “Also, that people are there with no information to share about their we know from the project we've been working on. Can you imagine not being able to speak for yourself and someone is caring for you?”
  • “Professional staff listening carefully to the care partner/family. “Always listen to your patient” - only advice my Mother gave me when I went into nursing - it continues to be the simplest most truthful fundamental premise!” “Staff asking what approach is generally most successful with the patient with a dementia illness eg my husband has no hearing loss so speak in a normal tone; his music iPod calms and reduces boredom.”
  •  “Possible improvements to environment for patient and family: Never forget that each patient is dearly loved and this is not diminished by dementia - this approach can make everyone more sensitive and aware about taking a few moments to anticipate and ensure basic needs are met eg. Food, drink, toileting, cleanliness without the family having to repeatedly ask and feel like a pest.”
  1. What barriers exist to providing excellent care in an acute hospital setting for patients with cognitive impairment and their family care partners and (3.)What could be done to improve the environment and care for patients and their family care partners?

Key Findings:

Adjusting the hospital environment, design and pace to make it more dementia friendly:

  • “The hospital environment always seems so rushed which I realize is the nature of their work! For the person living with cognitive impairment this causes increased confusion and agitation. This was definitely the case with my mother-in-law.”
  • “I think that an acute setting that would have the understanding that a long wait in a long crowded area would not be appropriate for someone with any sort of cognitive impairment! So a quiet area/room would benefit the patient and also the caregiver.”
  • “Although the hospital was shutting down their Palliative Care unit and there were very few private rooms available, they went out of their way to provide a private room which made the end of life process much easier.”
  • “The ED was a bit of a challenge due to lack of space and seating. There were times when we blocked traffic in the hallway.
  • “Quiet room is a good idea. Also a curtain shielding activity in the hall. My mother saw a screen saver on the computer and she thought it was trying to tell her something.”
  • “More individual support for meal times so families don't have to stay.”
  • “Extra staff. ie A respite worker that the person already has would be ideal right. However this is considered double dipping therefore families have to pay private price when their loved one is in hospital. $22.00 rather than the regular $6.00 for 4 hours of respite a week. Not many can afford this.”
  • “In my experience, those with cognitive impairment or behaviour issues were left next to the nurse's station where they could be easily seen. However, that added to the noise level and nothing seemed to be done to work with the patients.”
  • “We thought low music might help but that became more noise. It is difficult to "filter" out different levels (talking, seeing computer, listening).”

Identifying and flagging cognitive impairment in ER and developing a plan of care earlier as well as providing training, coaching and support to families, staff and volunteers:

Additional Barriers:

  • “There is never enough training for staff and caregivers! The Montessori techniques work in LTC quite effectively, ie doll therapy, music and ipods. Fiddle quilts . There is infection control to worry about too – that might be a barrier.”
  • “Having a good relationship with you family MD to cover any non-dementia medical problems.”
  • “Early diagnosis is key, followed by acceptance and implementation.”
  • “I believe reducing ED visits starts with an early diagnosis and supporting the families through education and community services such as respite or day programs.”
  • “In regard to front-line training, we have had great success however the challenges we face is getting administration to support the staff after their training. Staff do not feel supported.”
  • “I agree. We often Invest in the education and then not support the transfer of knowledge to practice - the Knowing-Doing Gap (Pfeffer and Sutton).”
  • “Training and working with Volunteers could be a great thing. It would have to be specialized training. In our Day Program, we have people with multiple co-morbidities and so their care and supervision is complex. Lots of risk.”
  • “Another issue is hearing aids. People often talk loud to an elderly person. With hearing aids it can be excruciating.”
  • “Lack of knowledge and understanding is a barrier. Education and awareness seem to be the issue with so many things that need changing. I also work with Elder Abuse and stopping it depends on education and awareness.”
  • “Education and opportunities built into work processes to use the knowledge and skills. Also, developing a common langrage between various health care providers and family care partners is needed.”
  • “It all comes down to appropriate funding.”
  • “If there a conflict with the core business of ED- fixing medical/physical issues and helping people move on- addressing dementia may not always gave a clear path.”
  • “The ability to climb stairs safely for my husband was assessed in a large cement/concrete block stairwell where only one handrail could be reached. Such a space was intimidating for me due to its foreignness, and just imagine a person with dementia, prior incarceration or wartime experience. On arriving home my husband was unable to use stairs in our split level, and it wasn't possible to ascertain if he was fearful or weak. OTs need to look through the eyes of their patients.It was an unnecessarily challenging assessment.”
  • “There are barriers around using personhood tools. My concern about the 'about me' card is that it is not standardized and hospitals won't know what to do with this. The hospitals should require the information to provide care.”
  • “A barrier to one solution: information embedded OHIP cards, is keeping the information up to date, things change, and OHIP cards last for years.”
  • “Heavy workloads, lack of attention or knowledge about successful approaches when working with the dementia illnesses and staff forgetting about dignity and respect for all can be barriers to excellent care.”
  • “Many people with dementia present to the ED alone. They may be coming from home (care partner cannot attend), an adult day program or from LTC.  As they are often unable to express their needs, those in the ED have difficulty assessing the situation and this brings potential for misdiagnosis and incorrect medication (this aside from the frightening experience of being there.) It was stated that all people with dementia should have someone accompany them or that “family should be there.”  This is not reality.  Many are alone…most not by choice.  It was also stated that the Psychogeriatric Team should be called or be there instead.  The reality is that the PGT is overwhelmed and response time is substantial.  The PGT does not respond during off hours or on weekends.” 

Flagging and Identifying Cognitive Impairment in a Stigma Free Way:

  • “We did go through ED and when my family member was teetering on the diagnosis of Alzheimer Disease. With me working in the system, I observed the ED. They did an absolute perfect job in their physical assessment, however did not do a cognitive assessment/screen. Of course they examine/assess the chief complaint...however the reason for the car crash was not assessed (cognitive impairment). Because I work in the system, I already had things lined up for this assessment but all I kept thinking about were those folks who do not have anyone or do not work in the system.”
  • “An advocate in ED, perhaps a geriatric nurse of social worker to flag people living with cognitive impairment would be helpful.”
  • “Going back to the role of Physician Assistant, this is a person who could inspire change and encourage it across the silos of care. I think the difference between patient-centered and personhood is huge. "Patient centered" is too open to interpretation and can equate to task oriented unless everyone is on the same page.”
  • “The great benefit of GEM programs is people are flagged in ER. In our case, mom had a delirium that went undiagnosed for months...if this had been flagged earlier, it would have made a huge difference.”
  • “Improved flags/assessments for patients receiving home care services through Home & Community Care (formerly CCAC) may help connect people to appropriate services sooner.”
  • One experience that I saw from the UK was the 'butterfly scheme' where dementia patients were identified in acute care with a butterfly, and special trained staff in dementia also wore a butterfly. Patients and families could 'opt in' to being identified. (nurses volunteers etc).”
  • “That would be a much more dignified way of identifying a person with cognitive impairment. When my mother was in hospital they taped a large X on her back to identify her as a wanderer. I never really got passed that. It felt so unfriendly.”
  • “It is so important to have a non-threatening, understanding and compassionate way to have patients feel cared for (and identified) regarding their disease as opposed to targeted.”
  • “I like the butterfly, but what about the Alzheimer Society umbrella?”
  • “The umbrella indicates that the person or place is dementia friendly. It's a great initiative. Here is more information”:​eimer-research-and-education-prog​ram/dementia-friendly-communities​-blue-umbrella-project
  • “The umbrella is used all across Canada. It is becoming part of the National Dementia Strategy for Dementia Friendly Communities.”
  • “If only we could get the information embedded in OHIP cards.”

Coaching, Supporting and Educating - Families, Staff and Volunteers:

  • “I spent many hours and nights in ED with mom for other medical reasons not related to dementia, with many other patients with dementia, so to keep things calm for mom, I spent time coaching other families coaching on responses- some just didn't understand that arguing wasn't helping, turning lights off in the examination rooms to reduce agitation of someone in a delirium, demonstrating validation communication techniques etc., perhaps an advocate in ED with these skills might work well.”
  • “Having an advocate to coach and demonstrate responses would be helpful on the hospital floors after admission as well.”
  • “The GEM program is helpful in ED, but needs to expand substantially.”
  • “The idea of an advocate in the ED is wonderful. I've also heard of Geriatric Emergency Nurses (GEM) nurses involving people with dementia in Montessori Activities while they are in the ED. Here's an article about it from the National Post:​onto-hospital-uses-new-method-to-​calm-distressed-dementia-patients​-in-the-er
  • “On the hospital floor, the physical therapists come in and do group exercises. A somewhat similar program could be developed for the GEM nurses, but not necessarily on a group basis. For instance, they could come in on certain days to give suggestions for specific patients and come back to follow up.”
  • “We have many great successes in LTC using Validation Communication techniques to meet the person where they are. An example is if someone is calling out that they want to go home, the staff in the past may have said 'this is your home' when it is more helpful to engage and ask the person about their home and encourage conversation instead of shutting down the conversation The 3 Rs works very well too- Respond to the feelng, Reassure and redirect.”
  • “Provincially we have seen a program like you describe work very well in Long Term Care. The Psychogeriatric Resource Consultants (PRCs) do just that. The help the staff understand the person with dementia (+/- responsive behaviours) and together they come up with meaningful strategies/interventions for that person.”
  • “And in some areas of the province, Waterloo Wellington for example, the PRCs are now going into hospitals! It would be great to have more PRC’s and especially if they could focus on acute care. Hopefully, it can be expanded across the province.”
  • “ I would personally love to see Behavioural Supports Ontario staff mobile response team staff working in emergency departments and acute care floors full time providing support to people living with cognitive impairment and flagging deliriums early and getting their personhood info - and enforcing the supports people my perfect world.”
  • “I like the idea of building skills with existing hospital teams and providing resources and spaces that support patients and families in conjunction with mobile or other specialized resources.”
  • “Specialized dementia education and training is key for all front line health workers.”
  • “Another idea is also having dementia trained volunteers and observers in hospital and not just nursing or other health care staff.”
  • “ I think a volunteer that is well education would be great and they would have more time to attend to the patients and family members than busy front line staff!!:
  • “We need friendly visitors with lived experience and training in the ED.”
  • “Volunteers could also serve as coaches and support the family members as well.”
  • “It would have to be 'in addition to' but often nurses, PT/OT are busy. Volunteers often have the time to spend with patients. They could accompany them at high risk times like sundowning periods, mealtime and even be trained in music therapy/ipods etc to decrease behaviours and potential delirium/agitation etc”
  • “I work with Dr. Dallas Seitz and he did a research project a few years ago with Volunteers. It was called VALID (Volunteers Adding Life In Dementia). It consisted of providing volunteers in LTCH with enhanced education.” http://mydigitalpublication.​com/publication/index.php?i=22553​3&m=&l=&p=15&pre=
  • “One solution would be the BSO mobile response team members were given more resources and could be called in to travel with patients. That would be amazing.”
  • “The BSO Mobile Response Team consists primarily of nurses and PSWs and they travel to different LTCHs in the region to support residents presenting with responsive behaviours.”
  • “Behaviour Supports Ontario (BSO) initiative 2011-present. Some LHIN areas embedded resources in LTCHs; Some used a Mobile Response Team model. In our area we started with an MRT which is going fabulous and with subsequent funding our area has also embedded some resources in now we have a blended model.”
  • “In Champlain LHIN (Ottawa) there are specially trained behavioural resources that work in the hospital that support assessment & intervention planning. Also some of the large US hospitals are implementing in-house BIT teams- Behavioural Intervention Teams.”


November SE Ontario Live Chat Summary:

Tuesday, November 7, 2017 TOPIC:

Tonight's 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?"

As you reflect on your many different experiences receiving care as a family caregiver/ friend (in the home, family doctor, adult day program, hospital or Long term care etc.), come prepared to share some of the communication gaps you have experienced as well as examples of excellent communication, why it was so helpful and how communication can be improved.

Key Findings:

Talking to the person, not only the family care partner and speaking in a manner that they can understand:

  • “One thing I have encountered and heard is the doctor doesn't talk to the patient - they spend their time dealing with the screen and not talking with the patient... the next step to that was that they talked to the caregiver instead of the patient. I know my father found that very annoying even after the dr. was asked to talk with Dad... Then he used large words and didn't try to tailor the conversation to fit the situation.”
  • “Right off the mark, actually getting the health care provider focused on speaking to the person living with dementia can be an issue at times.”
  • “The neurologist was terrific with him, spoke to him kindly and directly, eye -to-eye even though she knew he wasn't taking in the medical lingo.”
  • “It is so important to know the clients very well to develop appropriate ways of communicating. For some folk dealing with dementia, choices/decisions just aren't feasible and can cause a lot of anxiety.”
  • Respect and acknowledgement is so important to the patient.”

The importance of creating a space for non-rushed, quiet and complete conversations when discussing things with people and/or their family care partners:

  • “Taking the TIME to speak with someone. Communication can't be rushed. Also, that people really care and respect them.”
  • “I think it is important to provide quiet spaces to talk – not just the hallways.”
  • “I think that all medical staff in all areas are too over worked and rushing to the limit.”
  • “Being half answered can leave you feeling more isolated.”
  • “Half answered or dismissed with no answer is so frustrating.”
  • “So please stop rushing us; then we wouldn’t have to go to the internet.”
  • “Sometimes I don’t feel they understand there is a history behind our caregiver behaviour and that has led to us wanting answers and respectful communication.”
  • “At the time that you are looking for answers we too are perhaps too eager to accept a rushed answer. Later when your emotions are not so raw, we open computers seeking answers, jot down our notes and questions, only to be shot down when you bring those questions to the doctors and told to stop internet doctoring.”

The barriers that exist affecting the practice of having accurate and up to date documentation and written communication between staff (as they transition between shifts) and between staff and family care partners and the importance of addressing those barriers:

  • “The other big thing for hospital / family communications would be to have a communications book... like my kids had in school.... every day the teacher checked it out and so did we. People have a hard enough time trying to keep things straight but then with dementia, you have no idea what's going on if you weren't there when the doctor had been in.”
  • “I love the idea of the family communications book - where communication could be recorded from both the health care folks and the family or friends - sharing observations, even simple questions or little updates of what they have done.”
  • “Too bad there wasn't a polite and "confidential" way of doing at a hospital etc.”
  • “I believe in a hospital setting, implementing a so called book that nurses, care AIDS and caregivers could write notes into it to each other, would most likely just disappear.”
  • “I believe , if they have the big bulletin boards mounted to the wall in each room like at PC, that we should use them to communicate like care givers to the staff.”
  • “I see it even at LTC. Ask a nurse if your loved one had blood work recently or a urine test. I cannot tell you how many times I stood at the desk while books were flipped through trying to find the answer to the question. Or how often I was told one thing but had it disputed by the next staff member. I see staff meeting as new staff come on duty but it does not seem like there is any communication either verbally or written.”
  • “One reason is that stupid “privacy issue. If the POA for someone says it is ok there should be more latitude about what information is at hand.”
  • “Monitors outside the rooms should be used for staff and families to share and know what’s going on with a person.”

Family Care Partner Inclusion in Decision Making and Discussions:

  • “I’d love to see mandatory huddles that include the caregiver as an equal....after all we are all working to a common goal, no? The best care for the patient!”
  • “Yes, more inclusion of families in conferencing as it is to be patient/family centred approach; families are critical components as we are often the voice of the patient.”
  • “When my husband came here three years ago, we had one conference with the Doctor, the head nurse and two other staff members that would be included in my husband’s care. It was informed very well and told that we would have those every few months. I haven’t had one since in three years.”

Accountability and Clear Lines of Communication and Responsibility:

  • “My issue with LTC is I wish there was one or two staff who were assigned to be my mom’s staff. Then if she lost her shoes, her teeth were missing or I wanted to share and observation about something I was concerned about, I would just have one or even two staff and there was a clear line of communication and responsibility, rather than running around trying to find a person who might know the answer.”
  • “Yes, rotating staff can be an issue for sure. In one LTC placement my husband was in the staff rotated to different floors and he rarely saw a familiar face. That was horrible for him.”
  • “I worked in psychiatric hospital. Each staff member had what was called  Prime Patient and would focus on their care.”
  • “I used to work in group homes and even though you couldn’t be there all the time, you had your key clients – everyone cared for them and supported them, but you knew who was responsible for who and it made communication so much better.”

Good News Stories:

  • “It would be so nice to get positive feedback and to hear the happy little stories when something good happens in their day.”
  • “I would love it if it was part of their job to pass along photos or little stories of those happy moments too. It would help us so much. We wonder what the heck is going on today, does he have anyone sitting with him doing a task or talking to him. They are good at telling me when I am there, but a quick email with a couple sentences and an email – that would be so appreciated.
  • “When my husband arrived at the new hospital, one of the activity people sent me a picture as well of his arrival.”
  • “One of the Activity Coordinators in our LTC sent me a picture of my mom enjoying a music activity by email and told me my mom was having an exceptionally good day. It meant so much to me!”


This Resource Exchange was prepared by Sharon Osvald, Lived Experience Facilitator

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