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April /May 2016 Lived Experience Advisory Conversation Summaries: Resource Exchange:


This Lived Experience Resource Exchange for April and May 2016 is a summary of the conversations and input of 36 people from across all of South Eastern Ontario. 28 people were spouses, adult children, family or friends and 8 were older adults living with dementia, mental health or other neurological disorders.


Advisory conversations in April and May took place through phone calls, face to face meetings at facilitated by the Alzheimer Societies of SE Ontario and two Lived Experience Café themed live chats that take place on . Participants were invited to share their input – not as a complaints department – but from the view of making things better.

The April Live Chat topic was:

This month's topic comes out of discussions at a recent event called Leading High Performance Teams Meeting, involving representatives from all the Long Term Care homes in SE Ontario and Providence Care Seniors Mental Health/Behavioural Support Services. The question was posed to everyone: "How Can We (long term care homes) Hear from the Voice of the Lived Experience?" Please bring your ideas - especially when it comes to dealing with transitions and responsive behaviours.

Key Findings from April Live Chat:

1.The Importance of Clear and Consistent Communication:

  • “There is a real barrier to getting information and changes in care plans from conversations at the Director level – actually to the people providing care.”
  • I have found all the staff are receptive to consultation; however I'm not sure they all talk to each other. We get a few repeat inquiries.”
  • “I find it is the everyday communication that is the hardest to convey – not the big stuff – but the little stuff like lost watches and can Mom get a haircut please?”

2.The importance of education, learning and being open to new ideas:

  • “New techniques and education is a way to a fresh page. “That’s not the way we do it,” is a very annoying refrain.”
  • “I find we have to guide them more than I thought we would. Before he went into LTC I considered them the experts and would know how to take care of anyone with Alzheimer’s. Meanwhile, everyone is so very different they rely a great deal on the family to support and guide their actions as well. I can only imagine the learning curve for the RNs, PSWs etc”.
  • “This forum is a good way to hear our voices, for anyone who wants to put their ear to the wall.”
  • “Right now the transition into LTC is so rushed and "bed-based"- somehow we need to find a way to slow this transition down.”

3.Caregiver Stress and Guilt:

  • “Being present for him is a fulltime job.”
  • “Yes, but a very necessary job!”
  • “Every transition is significant. Looking back the worst one was the day of admitting him to LTC – far more horrible than even his death.”

The May Live Chat topic was:

The idea for this month’s chat came from one of our Lived Experience Café participants and her involvement with the SE Ontario LHIN Older Adult Strategy. Caregivers were asked to anticipate scenarios what would happen – i.e. a fall or illness that would normally end in a trip to the Emergency Department. Our question this month is a three-parter:
1. 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?
2. What type of supports would need to be in place for you to feel empowered enough to not take that ED visit?
3. 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?

Key Findings from May Live Chat:

1. Positive Police Experiences:

  • “One day my husband was angry and took off down the road carrying a two by four. I went after him in my car to see if I could pick him up. He refused…I called the police. One of the reasons I called the police was that I did not feel safe. I was also concerned for him…The police were absolutely amazing! There was no force, just gentle persuasion. They brought him back home, with my husband regaling them with stories. The officers were clearly trained in dealing with someone with dementia.”
  • “I had the same experience – very empathetic and understanding and knew how to de-escalate the situation.”
  • “Looking back when there was acting out like this happening; the right thing might have been to have the police come. In my case CCAC told me to go to Emergency and that was not the best solution when I think of it now. Emergency is not a good place for someone with dementia."

2. Residents/Patients with Dementia Sent to Hospital by Ambulance Unaccompanied:

  • “The hardest time for me was not getting the call that she was sent to hospital. A message was left on my phone. So 4.5 hours later I found out! They did not send anyone from the home with her. How does someone with dementia explain what has sent her to ER?”
  • “I had that when my husband got sent back to the BSU from LTC, I did not know until late that night and my husband was alone (well, police were probably involved) it set him back big time!”
  • “I have heard of a four hour wait to reach the POA only when ambulance was called and yet other family members were listed as emergency contacts.”
  • “I also am confused and have seen that LTC sends a dementia resident on their own to emergency. To me that seems like one of the biggest gaps in care - I can't believe a person with dementia can be sent ANYWHERE for care, without a person who knows them and can speak for them!”
  • My experience is that the LTC has always sent my husband to the hospital alone. Luckily they have advised me and I get there - late but at least he had someone eventually.”
  • “A dementia patient should never be put in the position of being without an advocate when needing medical attention.”
  • The hospital ER doctor said something very sad because I kept arriving at 2, 3, 4 in the morning, mom's coat and boots in hand knowing I would be picking her up. He said not a lot of elderly people have anyone that comes right away.”

3.Avoiding Emergency Trips through Enhanced Community and Home Behavioural Support:

  • How do we avoid that trip to the ED? Even if the decision could be postponed, family could arrange things. Emergency will never be a place where someone with dementia will do well otherwise.”
  •  “I think you are on to something –the glitch seems to be Emergency being the point of entry for anything medical.”
  • “If emergency is not a good place for an older adult with dementia, IS there a better door in getting help? Maybe we need to provide transportation to the family doctor office and not just ambulance rides?”
  • “In York, England there is a rapid response system for dealing with dementia clients at home and in emergency. Two hours to get to your home. Their goal is to prevent the breakdown in caregiving.”
  • “Are we at a point where we are going to need a mental health type of Emergency? Or maybe a doctor who will be willing to travel in emergency situations?”
  • “That is the issue, there needs to be a medical intervention of a temporary nature in these situations until a reassessment can be made about the next step.”
  • “For me I would say one way to prevent a trip to Emerg is for someone other than the family doctor to take away driver's licenses… when the Dr. took the licence then there were NO more trips to the Dr. just emerg.” (They refused to go to their doctor – saw them as the bad guy).
  • “Mobile rapid response support that comes to the person’s HOME - be that the community, retirement home or Long term care would eliminate the need for a trip to the Emergency room.”
  • “Mobile behavioural response in our home would be awesome!”
  • “I would also love to see a Behavioural Emergency – like the BSTU but just for people getting worked up, taken off the wrong meds and put on proper care plans BEFORE they start focusing on where the person needs to go or live.”
  • “I second that as well!”
  • “Yes, care in the home would be so much better and it requires the WHOLE family to be involved, each with their own relationship and perspective to assess.”
  • “I am sure there would be the same organizational and communication issues we have when sending out PSWs and other home supports - but I agree I think Behavioural Support in the HOME is the answer to many of these issues.”
  • “Don’t forget the caregivers need Behavioural training too -- and therapy!”


 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:

1.The Need for Dementia Friendly Emergency Rooms and Hospitals – education and dementia friendly facilities:

  • “very often ER is not equipped to deal with dementia.”
  • Lived Experience persons felt there was a lack of training about dementia and responsive behaviours in hospitals and emergency rooms. “There seems to be a lack of understanding that responsive behaviours are communication – they are not being bad, they are trying to tell us something.”
  • “Every person working with older adults should have Gentle Persuasive Approach training.”
  • “It’s not the staff’s fault – hospitals are simply not designed, trained or equipped to care for people with cognitive impairment.”
  • There should always be on staff in Emergency who is trained to work with dementia patients, who knows Gentle Persuasive Approach and other skills for behaviour and calming.”
  • Point #6 from the Lived Experience Findings: (Providing Care and Compassion without making the person and/or family feel they are resented for receiving care) was discussed. After spouse had been sent to ER due to responsive behaviours, family members were told “I am not here to take abuse from people!” by angry staff member. “It was as if it was our fault.”
  • More stories about being people living with dementia being sent to Emergency unaccompanied or the family member not being allowed to enter ER department with them: “After arriving at emergency with my husband, I was not allowed to go into the appointment with them. “You have to wait here.” It was so scary for both of us.” “Without another person to speak for them - or some kind of instruction booklet, how can staff understand the person’s disease, triggers or things that will calm and soothe them? How can they know their physical limitations – Do they have mobility issues – Can they lift the tray for their food or even feed themselves without assistance?”
  • “My husband was instructed to find the washroom on his own. It was a disaster. They didn’t seem to understand his dementia and limitations.”
  • “It starts with Parking! Where to drop off your loved one and leave them on their own while you park and pay for parking.”
  • “Some hospitals are doing this now. Volunteers stay with the patient while the family member/friend parks the car. It might seem small but it makes a HUGE difference.”
  • Another issue was all those noise and busyness. This just aggravated him more. We really needed a quiet area to wait with some distractions, but not a lot of noise.”
  • “You can’t ask for more staff, we must be realistic, Volunteers might work, but there must be training so there is always someone who knows how to deal with this population.
  • “Yes, I think training is key.”
  • “I paid for a PSW to come with me on a recent Dr's appointment but that has to be arranged ahead of time. It was really helpful though with getting the car parked and the bathroom issues.”
  • “They just aren’t designed for us – but we received really thorough care when we got to emergency. They really knew what they were doing.”

2.Medication and Informed Consent:

  • Stories were shared of not consulting the substitute decision maker when administrating medications or when making drug changes.
  • Deviating from care plan – health care providers who are involved in the person’s care during times of transition do not see the care plan and administer medications the patient does not tolerate well.
  • Systems for identifying people when administrating medication are important: Family member witnessed a new staff to the residence attempt to give the wrong medication to her grandfather. The family had to insist she had the wrong person – the right gentleman was sitting across the room.

3.Clear and Compassionate Communication:

  • People leaving multiple messages for health care services before getting a call back of difficulties involving inter-agency communication.  “I called for over two weeks to get an answer on the phone and it will be another two weeks before they come.”
  • Family members not being able to understand instructions about when and where assessments are happening and not “catching” the name of the person or agency leaving the message. “I was told they were coming between 12:30-4:30pm. The second person that called took their time, explained things and was more pleasant and personable – it really makes a difference when they are.”
  • This modern way of handling people – too many people – not enough real human connections.”
  • “We just found out our Geriatrician is retiring – there was no notice or instructions on what to do from here. It’s very scary. Who will help us now?”
  • “Automated answering machines have replaced people. – you go through six lines later and you still don’t have your answer and there isn’t a person at the telephone to just talk to.”
  • The importance of taking time and having the right information: A health care professional talking to caregiver and her husband was asking questions about procedures that had never happened to them – realizing “Oh, I am looking at the wrong file.” The wife wonders, “How am I supposed to feel confident or get my husband to listen to their advice when they start off like that?”
  • Care and compassion when addressing people’s concerns. One woman expressed her fears to person coming in to set up home care supports. When she told her that she was frightened because of her own health issues and what if something were to happen to her – who will look after my husband? The response was “Sorry but we don’t babysit.”
  • “When it comes to dementia, we need to communicate about the whole person, not just poops. Good care takes time and communication. When someone takes the time and gives that personal touch – it just makes a world of difference to us!” 
  • “We are afraid to speak up when we don’t get what we need because we’re afraid of being penalized. We might get dropped or they’ll take away the help we are getting.”
  •  “I would call and complain, but I don’t want them to take away what I already have. They could do that.”
  • “We’ve been spoiled by the doctors at our Family Health team. They really sit down with us and listen, talk and make referrals. When we don’t get that kind of care from others we’re taken a back.”
  • Patient involved in Memory Clinic – praise for the simple and clear the take home material is for Memory Clinics. “The sheet I have even has all the doctors and people’s pictures. I have so much to remember. This makes it so much easier.”

4.Ethics and Education:

  • A concern around the training and rules for those offering care in the home and the ethics of receiving gifts, becoming “social media friends” and sending personal emails. “During a scheduled visit, our Respite Worker 'friended' my husband, who has dementia and significant judgment impairment, on Facebook.  My husband is trusting and has shown himself to be vulnerable to attempts to defraud, especially in regard to online activities.  I see this as part of a potentially bigger issue – the need for training in the area of ethical care in dementia.”

5.Way-finding, Signage and Good Direction/ Instructions:

  • Difficulty at finding parking and appointments at hospitals and clinics – especially during times of construction. Person booking the appointment should give detailed instructions, especially when a facility has multiple sites. This is very stressful for caregiver and escalates the anxiety and sometimes behaviours or the older adult living with dementia, mental health, substance use or another neurological condition.
  • Signage and clear way finding would be helpful. Several examples were shared of places that do this well and how helpful they find it compared to when it is not there. “Just having to go to these appointments is stressful- we are already dealing with some serious health concerns. That is enough to worry without adding the complete frustration of getting lost, taking care of your wife and not knowing where to go. By the time you get to the appointment you’ve driven an hour, fought for almost as long finding your way and then the appointment is only ten minutes long. Then you have to turn around and drive an hour back home sometimes, the help you get hardly seems worth the anxiety you went through to get it.”

6.Navigating Dementia:

  • Stories were share about the difficulties experienced by family members surrounding POA and issues of care and who gets to make the decision – when things are not clearly defined or when there is disagreement over how the care is being provided challenging that.
  • Difficulties in knowing how to navigate through the disease. “There is so much you don’t know and can’t find out – as you are making decisions. We need some kind of guidebook.”
  • Friends and family reported feeling in the dark when you are not the POA. “I was very close to my aunt all my life. I see some serious things that concern me and since I am not her POA, I can’t get anyone to hear me or tell me anything. I sent her doctor a letter – I asked him for an interview but he declined because of privacy concerns. I have no authority and her husband doesn’t want to talk about it. I am beside myself!”
  • “Its like a full time job – not just caring for my husband but trying to manage and arrange his appointments and find out what is out there, what we can get and then making it happen. It is exhausting.”
  • “I’m banging my head against other doors – just trying to get information.”

7.Respite and Adult Day Programs:

  • People shared the need for more respite close to home and Adult Day programs. “I hear such good things about this program but there are 25 people ahead of us. Will our name ever come up?”
  • “The adult day program is so helpful. It is what makes things work for us. It gives me the break I need and the social aspect is so important for him.”
  • “Getting into adult day program took a really long time but it was worth the wait. I find this with a lot of the services we receive. It is so hard to get the help, but once you get in the door – the help is very good. “
  • “I like that you can have the choice of a half a day at the adult day program and that only costs $7.00. A whole day is too long for my wife. This just gives us exactly what we need and lowers the cost.”
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