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Aug/Sept 2016 Lived Experience Advisory Conversation

Summaries Resource Exchange:


This Lived Experience Resource Exchange August and September is a summary of face to face and two live chat conversations and input of 16 people from across all of South Eastern Ontario. All 16 people were spouses, adult children, family or friends of an older adult living with dementia, mental health or other neurological disorders. The numbers are smaller than usual due to summer holiday/vacation.



Advisory conversations in August and September took place through phone calls, face to face meetings, one Province-wide Lived Experience Café themed live chat and one 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.

August Province-Wide Live Chat Topic

One of the key areas that the Provincial BSO Lived Experience Advisory has selected for this year is a focus on enhancing system navigation for older adults living with dementia, substance use, mental illness and other neurological disorders and their care partners. Our members expressed an interest in assisting in the development of a “navigational” resource to help people find their way through what can be a confusing health care system.

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?

Participants: There were twelve participants from across the Province in this live chat event. Six of the participants were care partners from SE Ontario.

Key Findings:

Participants all expressed “feeling in the dark” when looking for answers about the diagnoses, medications, available services and processes:

  • Key questions people had: “Where do I find information about this disease?, how do I cope with it all?, medication information, information about receiving respite, adult day programs and long term care and finally where do I turn when things go really really wrong?”
  • “For us the issues began right at the doctor’s office level. The only place I feel we really got any “navigational” direction was at the Alzheimer Society.”
  • “We didn't know where to start, then we kept running into stumbling blocks….it seemed like a game where you are only given clues and you have to sort out where to move next.”
  • The Alzheimer Society sent us to CCAC, we thought it was a province wide organization so we went to “the wrong one”, not the office that covers our town, so they wouldn't help until I made a sort of scene and then they redirected us.”
  • “For us, we were already familiar with CCAC, they had been coming to my Mom's house for years to help with my older brother who had a physical disability. They recognized Mom's dementia and got her into day sessions, but we were still pretty much in the dark until the day they called a family meeting to advise us that Mom needed pretty constant care and that we needed to get her into long term care as soon as possible. Six years later, I am thinking we were pretty much ill equipped and let others lead the way in what needed to happen. In a lot of ways I still feel pretty much in the dark. Seems the worse things get, the more questions I ask, I just keep getting the knowing nod and smile but no answers.”
  • ” I wish there was a clear answer on the value of medication. You listen to the family doctor and he says one thing, the emergency doctor ends up saying another and medications are all changed, then geriatric physicians get called in and they make other changes in medication but the entire time you are really at a loss as to whether you are agreeing to the right or the wrong things.”
  • “I just didn't even know what services are available, like I never knew about foot care clinics, or day programs or even behavioural support for that matter. I have been at a loss searching and talking to anyone who will listen.”
  • People found they waited and waited for information about services or long term care beds and then when things were ready it was instant – leaving no time to process or prepare for the changes: “CCAC was fantastic at communicating with me. My biggest issue was being told on a Monday morning there was no bed offer, so I went to Mexico my sister-in-law and got call Monday night that my mom had a bed - same Monday. Is there some way to delay the suddenness of moves and decisions – go from waiting and no info to next day they’re in! - something in the middle?”
  • “I remember how lost I felt -and how much of a crisis we were in with no direction - just me and the phone book.”
  • “You really have to sleuth!”

The Value of informative, up to date, accessible and easy to use Online and Booklet Resources:

  • “When I need to reach for help, I prefer doing that online.  The Alzheimer’s Society website could have a menu on their page that has headings such as: Substitute Decisions Act, Health Care Act, Behavioural Support, Homecare, Day programs transportation etc.”
  • “There needs to be better direction on CCAC websites and other community partners – with links to each other.”
  • “Internet wise, there is information out there - but not simple easy to find or linked to each other so they are easy to use.”
  • “Call it a resource page- add in a list of approved dementia-friendly places from diners to audiologists. They would meet the criteria of extra training to hold that title.”
  • “I do know that Alzheimer Societies across the province are working very hard at having consistent resources to help people including navigation.”
  • “I think the internet information is pretty much cookie cutter.”
  • “True story: sadly I spent many types typing these words into a search bar "Alzheimers help" help, help.”
  • “We still need things printed out for people too. Not everyone is internet savy – especially the over 70 crowd.”
  • “If resources are presented on a web page, there needs to be a search button where I can type in my need, making it easier to find! I hate searching and often just hit the "contact us" button. The web page must have a contact us button. Oh oh wait a sec, how about a live chat operator screen that pops up.”

Participants Expressed the Need for One Local Point of Contact/A Navigator or Advocate:

  • “It is difficult to navigate and find answers. Whatever navigational tool exists - it must be attached to a person or number who can help us wade through it. That person would be an advocate and navigator.”
  • “It sounds to me like the group is looking for one very local point of contact for all services that would help to guide them through the entire dementia journey.”
  • “I think that's a theme we hear all the time - one source, one navigator... someone who understands the local resources and can connect people to what they need!”
  • “I needed one agency that would sort my concerns then direct me to all the different agencies according to what they govern.”
  • “Online info is necessary but we are presently dealing with a big segment of the population that is not so computer savvy. Plus, you want a little hand holding when you get a diagnosis, not just the facts.”
  • ”I see that we have different navigational needs some are in crisis which need quick fast response and others are more purposeful and planned navigation.”
  • “Even with a health care background my biggest frustration is being navigated to a resource the person on the phone knows nothing about or it is outdated. It gives false hope.”
  • “Things are changing so fast. The websites often can't keep up or keep updated - that is why the navigator needs to be LOCAL!”
  • “Some of us need a person to support us and also have reliable electronic websites or documents we can access when needed at our finger tips – the ability to escalate and ask for extra help when needed.”
  • Characteristics listed of a good navigator: Trouble shooter, very knowledgeable and connected locally with key organizations that provide care, partnered, timely and collaborative as well as compassionate and empathetic.  Responsive and action oriented…. A good navigator is a phone, booklet or website with access to a real person, one who listens to your story vs telling theirs. One with contacts for the correct agency for your needs. One who is knowledgeable and has the title to back it up… I believe the navigator we are designing is a specialist for our families and clients and works inter-collaborative and crosses LHIN boundaries. Universal service! like the OHIP card…We need a person sometimes to ask...what does that mean?...We do need a person to ask the hard questions of and we need that person to give us the facts, not sugar coat to save our feelings. The unknown is often worse than knowing what to expect next... And if that person can't find the answers they will find them for us - not send us away to find it for ourselves and get lost.”

The need for peer to peer support:

“The most valuable help for me came from peers and friends first as they had hands on knowledge and my trust.”

“In the North East, BSO is in the early stages of launching a peer to peer mentor/coach program facilitated by those with lived experience.” (Participants expressed an interest in taking part in this program).

Examples of Navigational Supports that are Effective:

  • The resource of a “coach” was recommended. People have found this helpful but some of the barriers were cost and questions about qualifications.
  • Discussed the Benefits and need for First Link programs. First Link is an early intervention program that helps physicians and community service providers connect people with dementia and their caregivers to education, services and supports as early as possible after diagnosis.
  • Someone shared information about a health link number to call in Alberta that is directing people to resources including peer to peer support.
  • The Care Guide is a paper booklet and online website with a call-in feature that lists all Ontario contact information for Long Term Care Homes, Retirement Homes, Senior Products and Services, Community Support Services, Home Health Care, Assisted Living, Memory Care and Hospice Care. The booklets are free and the website
  • Shifting Focus is a booklet made by the Alzheimer Society of Ontario. Listed as a helpful navigational tool.
  • Canadian Mental Health is doing crisis video chats in the Mississauga region. It was recommended that we create something similar to help BSO care partners. Canadian mental health live video chat: here is the CMHA Peel link
  • “In the Erie St. Clair LHIN we have BSO System Navigators who are the "go to" people for anyone experiencing behaviours. They are the hub and communicator to Long Term Care, CCAC, caregivers, doctors, pharmacists, psychiatrists etc. It is working very well according to the caregivers. It would be good to have system navigators outside of BSO for the community and those not affected by behaviours.”
The September Live Chat Topic

September's topic comes out of conversations with partners in the Champlain Dementia Network and Behavioural Support Services Providence Care Senior’s Mental Health about respite.

Respite is something offered to older adults that enable them to stay in their homes longer. For some this is in-home supports, short term or overnight stays or adult day programs. ButWhat does Respite mean to you? What is working well and what could be improved to truly give you the “rest” and assistance you need? Don’t be afraid to think outside the box.

Key Findings:

Giving yourself permission to take a break is difficult:

  • “Learning how to use the respite time to relax and take care of yourself is very tricky...I found myself volunteering in other areas, for adult contact and a feeling of belonging when the person you are caring for has no idea what you are sacrificing."

 Lived Experience Members found Adult Day Programs to be a very beneficial form of respite for both the participant and the family/ care partners:

  • “The day program was wonderful, because the staff was amazing.”
  • “The day program works because the ratio of staff to clients was 1 to 4 or 5. They took great care to know the client and make the activities suit their needs. Dad was always happy to go “his meeting”.
  • “We call it “coffee club.”
  • “The program catered to him, his needs, his personality and interests and the ratios were better than other settings. It just works!”
  • “Dad didn’t always like people coming to the house to do 1 on 1, so the group atmosphere allowed him to be one of the crowd but still get what he needed!”
  • “I have heard that some people are not quite ready for the group, but for us it really was the best respite!”
  • “The best respite we have received - by far it is has been Adult Day Program. My mother refused to have anyone in her home other than family.”
  • “My mother LOVES the day program and I feel like she’s in a safe place. Not just physically but emotionally and socially. She’s with her peeps…folks like her…so she can let her guard down and be herself. The staff are outstanding. I feel they love the people there as much as family. I had to be sneaky to get her there. The first response was always NO! So, I took her to the Memory Café first and she like it. Then, I took her to the Day Program and the rest is history.”
  • “The only help available in our area was the day program at the time and we had not family nearby and my husband kept turning people away that came to the house. But, the day program gave me time daily to do some things and breathe a bit.”
  • “The HUGE problem with Adult Day Program. There are not nearly enough of them to meet the need.”
  • “Yes! The Adult Day Programs are the big win here. Good training, person centered care, good ratios – the biggest issue is there aren't enough of them to meet the need.”

Lived Experience Members found the Alzheimer Society Caregiver Days were good forms of respite:

  • “The caregiver days that I attended via the Alzheimer Society were good reminders of how to use your respite days! Wonderful!”
  • “Getting away to a day like that is really wonderful.”
  • “The Caregiver Day provided a lovely lunch that I didn't have think or do anything for and some creative, drumming circle, reflexology, therapeutic touch!”
  • “Getting away for me is always the best respite. It is the only way to truly shut it all off and get a true rest!”

Lived Experience Members had received respite from family and friends – but that it was difficult to arrange - None of the participants had been successful having short term respite arranged through health care providers paid or free.”

  • “If I could arrange it, one of my daughters would come to stay for a few days so I could “ Get out of Dodge.”
  • “ I was never able to arrange short term respite to go away for a few days, so I had to arrange with family – always family!”
  • “I was too scared to leave her with strangers.”
  • “ It was always Family early on, I could take my husband to Toronto and drop him off for a few days. I had no luck arranging other forms of respite.”
  • “The peer to peer is sometimes nice, but it involves payback -which can create problems equating to more stress. If I need help, I probably don’t have time to return the favour.”

Lived Experience Members Found Technology to be a form of respite – Tools like Face Time and Skype allowed them to visit from home sometimes, rather than having to travel into LTC Home every day.

  • I am SO jealous that you can FaceTime with your husband. Our home does not have free wifi or any computer/internet to support that happening. But, that would be wonderful!”
  • “FaceTime and Skype is really helpful for us. Virtual hugs are good too!”
  • “You know, this is a form of respite too that is really “out of the box”. I get that sense of connection with my Mom, touching base and seeing she is safe without having to drive thirty minutes or take up a whole afternoon when I am stretched for time. This IS a type of respite.”
  • “What a fantastic idea!!”
  • “Yes. And it’s allowed me to travel for both business and pleasure - which IS real respite!”
  • “It is enough to give you a good night’s sleep and/or a day without worry!”
Aug/Sept Face to Face/ Phone Conversations

Other conversations occurred face to face or by phone simply inviting people with lived experience to reflect on their health care experiences and to share “what is working well and where are the gaps?”

Key Findings of Face to Face and Phone Conversations:

Navigation and Collaborative Care:

  • Participants reported feeling “at the end of the rope”, not knowing who to call, what services were available for their family members or how to access those services. “If there was just one person I could call who could give me a straight and correct answer. Is that really an unreasonable request?”

Inconsistencies and Interpretations:

  • “A lot of important and live altering decisions are made for an older person based on someone’s interpretation of the events. One staff member might view a certain behaviour as a response to their environment, as simply being startled or trying to protect themselves and another person interprets those same behaviours as violent or aggressive acts. I have no choice (along with my loved one) to absorb whatever consequences roll out because of that (very subjective) decision. There just has to be a better more just way of coming to those conclusions. I don’t know if the answer is education – but there has to be some solution!”

Stigma and Cultural Understanding:

  • “I don’t think we can ever stop teaching people about ageism, about stigma and stereotypes when it comes to seniors in general – let alone someone disadvantaged enough to not be able to speak for themselves (living with dementia.) We can’t stop saying it over and over again. Hopefully, some of it will have an impact.”
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