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June/ July 2016 Lived Experience Advisory Conversation

Summaries Resource Exchange:


This Lived Experience Resource Exchange for June and July is a summary of 9 face to face and two live chat conversations and input of 80 people from across all of South Eastern Ontario. 70 people were spouses, adult children, family or friends and 10 were older adults living with dementia, mental health or other neurological disorders. 


Advisory conversations in June and July took place through phone calls, 9 face to face meetings 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 June Live Chat topic was:

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:
When caring for an older adult 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.

There are four questions they have for us:

1. What is a reasonable ask for family/care partner participation when gathering that information? What are you willing to do?

2. If a standardized tool was created to gather that information – what should it look like?

3. When is the best time to ask/collect this information from families/care partners?

4. How do you think this could be shared effectively with health care providers?

Key Findings from June’s Live Chat:

A lack of understanding on the part of the family and care partners: Participants felt the question just wasn’t what were they willing to do – but why were they doing it in the first place?

  • “I recall back then I was shy to tell the dirty laundry."
  • “I think we also didn't understand WHY they were asking and WHY that info was so important for them to manage their behaviour.”
  • “I remember being asked to do a story board when my Mom first went into the nursing home, that was more than 5 years ago and sadly the cork board is still sitting upstairs with the wrapping on it. If only I knew how important it really was back then, the staff could have learned who my Mom really was - but we all only thought in the present and hung current photos of her. That only told her current story and they could clearly see her current story by the coming and goings to the nursing home.”
  • The issue might not be only creating the right TOOL for us to share as much as it is helping families understand why it is important and WHAT they should be sharing.”
  •  I think there is a disconnect.....Social/case workers seem to assume that we grasp why they ask things of us and they do not seem to understand how over whelmed we are.”
  • At the time, I felt nothing but loss, I didn't want to look at those photos -they made me feel guilty. I didn't know how or why they might be helpful.”
  • “Perhaps a workshop situation would have been helpful, like at a caregiver day when everyone can relax and understand the importance of the history of someone’s be able to reminisce.”
  • “That is a good idea, a workshop…that could even happen every quarter or so - for all new families.”
  •  “There does need to be clear guidelines though as to what is too much information or not enough information.”

The need for two types of standardized tools: The need for a booklet that shares photos (maybe even videos) with “as much information as possible” AND something more accessible and hands on for front line staff to use. Participants also saw the importance of use of technology such as Facebook, facetime and Skype to learn more about their loved ones.”

  • “I love the form the Alzheimer's Society uses (All About Me) and have used it for many many circumstances, from long term care to private care to family.”
  • “When gathering the information, it shouldn’t be done in a manner that leaves the resident feeling like they are interrogating her about her life.”
  • “I think a form similar to the Alzheimer Society form would be satisfactory vs a video or too much detail”
  • “I think both written and photo would be good especially if they are using it to help the person with dementia and not just for their clinical information. Anything that will spark a smile on my mom’s face or in her eyes is worth every minute of digging.”
  • “I really like the Alzheimer’s Society booklet!!!”
  • “I think a visual cue is needed for some things (staff changes,no one actually reads it etc etc.) Could there be some chart on the back of a door or one shelf of memory box outside the door that has a picture of the MOST significant things?”
  • Let’s call it a book of CUES.”
  • “Yes, I like that! The Book of Cues: What calms me? (ex a cup of tea, pics of babies, chocolate ice cream) - What is the best cue to get me to get dressed, go to dinner etc? What makes me agitated? - Noise, crowded spaces etc.”
  • That would really be cutting to the heart of the matter...allowing the staff to get their jobs done and have happier clients and families.”
  • I also think the resident/patient should participate if at all possible.”
  • In as much as it is possible, forms should be self-completed? You know how each sibling has a different perspective and different memories etc.”
  • It is good to get as many family members/friends as possible to share their perspective and input – it is all helpful.”
  • “The nursing home is where my Mom resides. Every resident has a very large photo of themselves outside their room to help them find their way. The photo is changed out with the season. They also have Facebook time where someone sits with Mom to go through her Facebook page and we post photos and tag the people in the photo so the PSW knows who to mention when talking to her. We can go on-line during computer time and chat, just like this with Mom. They originally were asking me for photos in print to show her every time she is upset and says her family never comes - but Facebook is so much easier for all to participate on instead of all the photos being about those that live close by.”
  • “They will also allow SKYPE time so that people can talk from afar face to face. I only tried it once with my Mom when she was at my house for an overnight stay and it was her sister’s birthday. My cousin and I arranged to Skype into the party and my Mom was the surprise visitor.It was a good day.”

Understanding life history and cues is very helpful to staff supporting a person with dementia – however life information/ care plans were not always effectively shared with front line staff:

  • “When you were tired of hearing the same old stories, now we know that we can throw them out as a great distraction towards a good memory. It can resolve a lot of things.”
  • “My dad was raised in a Victorian family, so to get him cleaned up all you have to say is: “Time to get dressed for dinner”...but the PSW's don't seem to know/use this cue.
  • “I know someone who was the landlady in an large apartment building and so she thrived on watching the TV channel that showed the camera filming in the lobby – knowing this would be very helpful for staff (she might think what she sees on TV is happening outside her room.)”
  • “Our nursing home recently held a guess-who? afternoon for all the residents. We were asked to send in photos of our loved ones when they were various ages. I think this was a great idea.”
  • “It is my understanding that something called a "CARE PLAN" in long term care is like the bible of rules and directions to follow. Anything that truly matters needs to be in the care plan – but how do we get people to read it?”
  • “What about a clipboard on his wheelchair or on his door – and something that travels to hospital – like a passport of sorts? Don’t leave home without it.””
  • “They have 'misplaced' my parent’s care plan.”
  • “Maybe the answer is an APP!
  • “I see some residents have notes posted to their door like "Wake up at 7:00 every morning and resident needs to be showered."
  • “But the "careplan" is usually huge and only gets skimmed by staff because they are too busy…but, I think and app is a genius idea!”

Communication Barriers: Families and Care Partners sometimes found it difficult to gather life event information from  parents and other family members due to 1. Differences of opinions 2. Lack of knowledge/cooperation and 3. Discussion can be extremely painful and emotional.

  • “I wish there had been a guideline, my siblings were both visiting at the time and I asked for their help. It turned into quite an emotional roller coaster with memories of bad times we had long since put to rest - but in my mind necessary to help Mom. My older sibling did not take it that way and was very upset while my younger sibling was too little to remember some of the bad times.”
  • “My father is living somewhere in his teens...there is no one left to help with that info...all I can say is that he is very private and stoic.”
  • “That is hard when there is no one to fill in the blanks that we as children have long forgotten or have our own version.”
  • “I recently visited a younger brother and he brought up something from our childhood about my dad that for years I have had a totally different idea of what happened. Since he was front and center of the event he was certainly the one in the know.”
  • “My dad has never been a talker.”
  • “Last month, visited my Mom's older sister who had written a few short stories about life when they were kids. My Mom's younger sister also has her own little short story life history that I would not mind getting my hands on.”
  • “I think some of that will also depend on how close a relationship someone had with their family member. if you lived far away and weren't really engaged for the last 20 years it will be harder to share a video or something more involved.”
  • “People change! When someone enters long term care, you might say something to staff like "Oh no no no, my dad never would go to something like and art class" cause what happens is two things, there is now time for new interests with new people and there are a lot of hours in the day to fill.”

Information should be gathered and shared as early as possible:

  • “My Mom has also pretty much lost her ability to speak but when she does, the people she asks about helps me to pin point what time frame she is in. All those stories you wish your parents would stop repeating over and over again, sure come in handy now. I am glad I paid some attention back when I was likely rolling my eyes a little.”
  • “The best time is as now. I mean you need it should they go to hospital vs waiting for a caregiver situation.”
  • “I wish that we had done it much sooner than waiting for crisis. Everyone’s emotions were on edge and things in my opinion, were not handled as they should have been.”
  • “I agree about sooner rather than when in crisis and if possible while our loved one is still able to help fill out what is important to THEM.”
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