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Vicky Willis


January, 2019 Live Chat Summary – SE Ontario Lived Experience Network: Was made up of six participants.

January 8, 2019 SE Ontario Live Chat Topic:

Background: Our SE Ontario Lived Experience Network Live Chat Topic comes from Kathy Baker.

Question: 1) With the diagnosis of dementia what were your main concerns around safety and how did you come to identify those risks?



Cooking was a concern that was brought up.  ‘Starting to cook then leaving to do something and forgetting to go back.’ And concerns of weight loss. One solution was to turn the valve off to the source of the propane.  Although safe it is only viable if the source will never need to be turned on again.  Other suggestions were to use the timer on the stove, a cell phone with the timer or watch with an alarm.  But the person needs to remember to use it or with hearing loss may not hear the alarms.  Google Home device sits on the counter and is spoken to.  I just tell Google to set a timer and it can be heard. It is also a good reminder to ask questions like the weather or how many ounces in a cup ...etc   Another suggestion if the person is living close to have them for meals or taking leftovers or meals to them.  ‘Microwave cooking could be employed more.’ Meals on Wheels was also mentioned.  But loneliness could be an issue as well.

Driving is a big issue for care partners.  Independence and self esteem are challenged when the license is taken away.  ‘I also worry about losing my licence and not having the independence to go anywhere. We live rural and it would be isolating’

Independence is a concern. ‘I think people know something isn't right long before loved one's notice but it's too scary to address beacuse of the independence thing’ I think she knew before we noticed the changes and stopped doing things to keep herself safe (and did not want to say anything to us). ‘my Mom and I have had some good chats about what her Mother went through. She has been great to tell me when I feel she needs to lose independence to be safe or needs the care only a LTC facility can offer that I should feel free to implement these things. It takes a lot off my mind and honestly I will do this when its required.’ It is very important to listen and make decisions together. Anger and frustration can occur because they fear and have loss independence. ‘Mom's late onset depression was a sign of early cognitive changes- wishing now my mom would have conceded to accepting treatment sooner. She was often angry and refusing help, refusing advice, pushing us away’

Concerns about wandering can be an issue for care partners as well.  Worried that they will not be able to find their way back home or gone long period of time.  Medi Alert bracelets were somewhat reassuring but using a GPS tracker would be more assuring.  Another program is (Safely Home) through the Alzheimer’s Society. 

·       ‘She developed a bladder infection and became very confused with a delirium and in 40 mins walked 4km last January in freezing cold temperaturs. We live in Trenton and as I was on the phone to the OPP, they actually had located her.  It was very scary for all of us, my mother-in-law especially’

Police, a last resort, can be a positive experience.  Some police have training for dementia encounters. ‘Quite a few stories of frantic police calls by his wife. The police were very good about how emergent it is as well and  also about not making him feel like he had done something wrong.’

Falls are always an issue.  As many people with dementia are elderly or have other health concerns.  Slipping on stairs or floors can pose a problem.  Bright coloured tape on the edge of stairs to identify the different steps have helped.  Not knowing what is happening in the home while the care partner is not there can be solved with surveillance cameras or Life Line.  It can show if someone had fallen. 

PICA (putting non-edibles in the mouth) is difficult as something can go into the mouth so quickly.  We had to make sure that items were put away and out of sight.  Redirecting to avoid anything laying on a counter.

Another concern was about medication.  Remembering to take medication or forgetting that the days medications have already been dispensed is an issue.  Totally taking over the dispensing of medication is the safest but independence is again taken away.

Showering a concern for hygiene, but also leaving the taps on or burning because the water was too hot.  One solution was to make directional signs on the taps.  Turning the hot water down to a temperature that is hot but not scalding.

Setting up a POA and banking is important to do as soon as possible if not before a diagnosis occurs.  To change the POA can be done but very difficult.  ‘We have to jump through quite a few hoops to get my name as the lead contact for his health care’ 

Banking also poses a problem.  Online banking, low credit/debit card limits and no overdraft are good solutions.  ‘It was an easy solution without taking away her independence’  Carrying limited amount of money in wallets.  In LTC having imitation credit cards and Canadian tire money can give someone a sense of independence.

Creativity is a necessity.

‘At Providence Care Seniors Mental Health we are looking to introduce Occupational Therapy into our program so this resource would help to address safety concerns and provide individualized strategies.  There are a number of great resources/books to help address safety issues. 

‘CCAC OT assessed mom for safety in bathroom and meal prep nothing else included in report’

‘the OT and CCAC did not help me with safety or resources’

‘this is good news that we are developing the specialty role of Occupational Therapy to work with people living with Dementia!!’  ‘Great news!’

A Specialty Occupational Role is being developed to integrate into Seniors Mental Health outreach program to work directly with Outreach teams, nurses and psychiatrists.

‘OT is a vital member of the support team!’

‘How did people learn about the safety issues and strategies?  you had previous experience to inform you.  How did others identify the concerns?’

‘Alzheimers Society is wonderful. My port in the storm when all other services were non responsive.’

The Alzheimer’s Society is a great resource.  The internet but be careful because everyone is different and some information may not accurate.

Teepa Snow PAC training is helpful with many ideas of a Positive approach to Care.  She has many YouTube videos that can be accessed. 


In conclusion creativity is key to solve issues and concerns as well as access to people with specialty training including OT’s.



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June and July 2018 Resource Exchange Summaries

June - July 2018 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for June - July 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 40 people from across all of South Eastern Ontario. 33 people were spouses, adult children, family or friends and 7 people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in June- July 2018 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.

June to July 2018 Resource Exchange – SE Ontario Lived Experience Network 

June – July 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • “I think things are improving – especially when it comes to navigating health care and supports.”
  • “The Alzheimer Society Support Groups have been a life saver for us. We are getting out and socialization and help and support at the same time.”
  • “I was so impressed with the psycho-geriatric mental health. They really understood my husband. They knew how to speak to him and how to bring the best out of him.”
  • “We have been fortunate. Our doctor was knowledgeable and proactive. He referred us right away to geriatric mental health. People told us about what services existed, how to find it and who to call. There was great collaboration and a sense that everyone was working together for our good. We know we are one of the lucky ones.”
  • “Meals on Wheels and their frozen dishes are extremely helpful. That really helps me to manage things.”
  • “I didn’t think I wanted to be part of support groups with the Alzheimer Society. I was very skeptical about sitting around complaining together about our problems or sharing private things with strangers. But, in the end, it has been the peer to peer support, tips and care that have carried me more than anything else.”
  • “The Access transportation is something we really appreciate. We only just learned about it and it is so helpful to have door to door service.”
  • “I am happy when I see where the dementia strategy is promising to put their money. I feel like they’ve heard us when I see funding heading for navigators, adult evening/day/weekend programs and respite. It is encouraging.


  • “One frustration is that more than one social worker is supporting my husband. Decisions, plans and assessments occur with one social worker but then they don’t communicate to the other social worker. I feel like I always have to watch out for gaps – I can’t just relax and know they are taking care of things.”
  • “The toughest thing is when someone needs help but is still deemed capable and there is nothing I can do. My mom is 84 and living on her own. She needs help but I can’t make her do anything. She is flying under everyone’s radar in so many ways. I am losing sleep over it.”
  • “I appreciate the help we get in the home, but it is chaotic. Staff are always changing, people cancel without giving notice …complete no-shows… or they email/text me the night before changing the time they are coming from our agreed upon time. Sometimes I have appointments booked for myself or my husband and I’m expecting them to arrive at the planned time and when they change it at the last minute it just leaves me spinning. The supervisors assure me of one thing and then it doesn’t happen.”
  • “When it comes to assessments, sometimes I feel like no one is really listening. The questions are canned questions but not designed for real conversation, listening or learning.”
  • “My husband was only 55 when he developed dementia. He was too young for geriatric services. We felt so lost.”
  • “It might be my husband who has the Alzheimer’s, but I feel like I am losing my sense of personhood and who I am. I am becoming lost in this disease.”
  • “Lots of services and supports exist, but I can’t get him to accept the help. He is angry and in denial. He is younger than others at Adult Day and refuses to go. I can’t get him to do anything. I don’t know what to do.”
  • “Friends have pulled away and our world just gets smaller and smaller. When things started to change nobody believed me.  The loneliness is one of the toughest things.”
  • “Getting past the answering machine when trying to speak with our case manager is so frustrating. There are two people we deal with and the receptionist tells me they are in the building but not answering their phones. I leave a message and they just don’t call me back. I realize people are busy – but just a little communication and little reassurance that you aren’t abandoned would go a long way. Even if they’d both phone you back within 24 hours.”
  • “When I first started noticing the cognitive changes there were some really glaring things happening. I spoke with my doctor about them and his response is “We’re all aging.” It was almost three years before anyone would listen to me or believe me. Finally we switched doctors and things just improved so much. Things are changing, but it has been years of limbo.”
  • “The Ministry of Transportation needs education. My husband failed his driver’s test and was quite content to give up his license. He could sense he was making mistakes and forgetting steps. He could parallel park perfectly, but forgot to look back over his shoulder. When he failed the MTO encouraged him to try again! They need to stop doing that. They need to understand about dementia and training on how to deal with the matter with sensitivity and respect.”
  • “This is a 24 hour, 7 days a week matter. I am never not impacted by my husband’s Alzheimer’s. It has redefined me and our entire lives. I am so overwhelmed.”
  • “Education is a real need for everyone – staff, volunteers anyone who works with people living with dementia.”
  • “I feel bad for staff in LTC. I don’t think they have enough PSW’s as it is and then sometimes they are even short staffed from that. They are kind and working hard but there is not enough help.”
  • “This weekend there was only 2 staff on each ward because of the shortage of PSW’s because of summer holidays and staff shortages. They were putting residents into their pajamas in the middle of the afternoon just to get everyone done. I was so concerned I felt compelled to stay and help my husband with his bath and to eat. I have seen our nurse put in a double shift because they couldn’t get anyone and she had to stay only to come back in the next morning to work again. It’s not right to the staff or the residents. It can’t be safe.”
  • “I was with an older friend in the hospital and she had a fall. I went looking all over the wing to find someone and could not find a staff member. People were all on their break. I think there is a serious shortage of staff and PSW’s. I’m concerned that it is dangerous.”
  • *A caregiver shared a story of their spouse having at home with dementia and they had a bad fall, breaking both arms. They were sent home from the hospital and although arrangements were made for an occupational therapist and social worker to come in, it 15 days before home care was arranged for her. During that time they had no assistance with transportation, bathing/personal care or meals.
  • “My husband has dementia and heart issues. After surgery he was told he needed complete rest and no stairs, but they sent him home despite me telling them he’d have to walk up three flights of stairs to get to our home since I could not physically help him. They sent him home anyways.”


June, 2018 Live Chat Summary – SE Ontario Lived Experience Network: Was made up of five participants from Brighton, Trenton, Belleville, Kingston and Perth.

June 5, 2018 SE Ontario Live Chat Topic:

Background: Our SE Ontario Lived Experience Network Live Chat Topic comes from Cathy Study Smith, Manager, Specialized Geriatric Service CMHA, Waterloo Wellington and Pam Hamilton, Clinical Advisor and P.I.E.C.E.S. Curriculum and Education Consultant.

P.I.E.C.E.S. is a 16-hour Learning and Development Program for health care professionals throughout Ontario and across many other provinces that is currently being revised. The P.I.E.C.E.S. Program is committed to a shared approach that improves quality of life for persons who are at risk or living with complex older age related- health challenges including the dementias and/or other mental health and substance use needs. The P.I.E.C.E.S. Redesign Coordinating Group is seeking feedback and insight from the SE Ontario Lived Experience Network to assist in developing a greater emphasis on the importance of engaging and relationship building with the person, family care partner, and all TEAM members.

  1. Question: Reflecting on your lived experience, what specific moments, experienced along your journey, would you want included in the P.I.E.C.E.S. classroom learning discussions? Can you suggest reflective questions to ask learners for small group discussions?  


What Specific Moments and Information would you want included in P.I.E.C.E.S. class room learning discussions?

Seamless Processes, Consistent Care Providers, Clear Lines of Communication and Collaboration between Health Care service providers and Case Managers:

  • “Supporting my husband emotionally was quite challenging at our house as I couldn’t figure out how to calm my husband down or know what his triggers were – except sun downing was definitely a piece of the problem. It is tough when your own emotions are racing as well.”
  • “I think they key message I would want them to take home (and this is a message that P.I.E.C.E.S. is trying to share) is that the individual is a person...with history, and family and value...they should be valued and respected when receiving care - not just processed.
  • Also, that we need to slow care down....not work to complete the task...but meet the person's need. This really has to change - especially in long term is not the staff’s fault it is the design and staff model etc.”
  • “As a (person being educated to work in health care) too often I am trained by senior staff to get the job done quickly even when sacrificing care.”
  • “It is also important that they take the time to get to know the person - We just did a whole project on personhood tools - writing down people's interests, hobbies, likes, dislikes, highs and lows etc. are all essential to providing them quality care.”
  • “I think just the little things go a long way. Things like asking the patient how their day has been so far. How was breakfast? How are you feeling?”
  • “I think I would want them to know how important it is to partner with the families – give them a chance to partner and to share their observations and input. When huddles happen in Long Term Care, if a spouse is present why not invite them in? Ask their input. Make a spot on the communication board for them.
  • “Just simple kindness…it makes a huge difference. Staff has a lot of power.”
  • “In the past Health care providers were trained to not be connected to the patient - to keep a distance so they wouldn't burn out. They were actually trained to not "care" - I think that is changing. As a daughter of a mother in care, my biggest wish is that the staff, caring for mom, will really "CARE" for her...even love her. That might be too much to ask - but at least that they see her as a person who matters.”
  • “If health care staff could get into the habit of trying to improve their patient’s mood and cheer them up, their tasks would go a lot easier and in turn they would provide better care. It kind of goes full circle.”
  • “I think reading body language is so important as well. I don’t see a lot of attention being paid in that area, especially when the nurse or PSW is being rushed.”
  • “It needs to be a team attitude of any and all ideas and information from whomever – nurses, PSW’s family etc. in order to get the best quality of life possible.”
  • “Please stop coming up behind folks and just moving their chairs without warning!”
  • “I have witnessed the attitude that the clients do not know anything anymore so why bother…they are treated like a sack of potatoes.”
  • “I think the concept of slowing down is hard for people to understand. It seems unattainable. I think it needs to be a mindset of picking choosing what is important in that moment and it isn’t a laundry list.”
  • “It really boils down to rushed care. The health care professionals are being rushed probably because of understaffing and whatnot, then they get flustered and their care suffers. To combat that, I think just making them aware of the fact that things may get hard, they might get better equipped to deal with it when it happens.”
  • “Teach them to focus more on the person – even if their time is short. Make that time as caring and person focused as possible.”
  • “Put yourself in that place (the patient/resident) and think what you would want. It’s pretty simple really – some kind words, be gentle, don’t be loud or abrupt and don’t rush feeding me!! Say hello when you walk by and smile.”
  • “Feeling rushed in a work environment is often a chronic condition. This needs to change – instead it seems to being modelled and taught as the mindset of health care.”
  • “I would try and explain that my father is a gentleman to the core…but when two strange women walk into his room and start pulling on his pants without his full understanding, he will defend himself to the death. They call it “behaviours” but I call it stupidity!”

Can you suggest reflective questions to ask learners for small group discussions? 

  •  “I think I would want them to know how important it is to partner with the families – give them a chance to partner and to share their observations and input. When huddles happen in Long Term Care, if a spouse is present why not invite them in? How can we better ask their input? Make a spot on the communication board for them.
  • “How can we slow down the care we providing in order to treat the “whole” person?
  • “Ask them to list the key things that make up a quality, person-centred environment. Have them list the values that would matter to them if they were being cared for…then ask them what it is they are ACTUALLY focusing their time and energy on.”
  • “How can we complete our “laundry list” of tasks but in a way that promotes care, dignity – because truly are these not the most important things that should be happening at every moment throughout the more mundane tasks that are being performed?”
  • “Would you like two strangers standing over you, talking too loud (Did I say I was hard of hearing?) and pulling on your pants?”
  • “Would you like to be bathed by a near complete stranger and have this person now even consider your level of vulnerability?”

June 2018 Province Wide Live Chat Summary:

Behavioural Supports Ontario Provincial Lived Experience Network Advisory


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.

Participants: Our Wednesday, July 20, 2018 Provincial Live (typed) Chat event on included fourteen lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury), as well as the input of participants from Trenton, Kingston, Perth, Chatham, Toronto, Belleville, Cloyne, Barrie and Mississauga, Ontario. Maureen O’Connell, Psychogeriatric Resource Consultant in North Simcoe Muskoka was our special guest and brought us the following topic question:

Topic: Hope & Resiliency

The topic for June’s live chat came from Maureen O’Connell, Psychogeriatric Resource Consultant in North Simcoe Muskoka on behalf of their local Dementia Conference planning Committee, as they explore the topic of hope and resiliency: “the inherent strength that people have to cope and live well with chronic illness.”

Questions: How might health care providers build hope and cultivate resiliency in those living with dementia, complex mental health, substance use and/or other neurological conditions and their care partners?

  1. What actions, words or phrases help to build hope and support?
  2. What actions, words or phrases damage hope and resiliency?
  3. What strategies have you used to remain hopeful and resilient throughout your journey?

Key Findings: Question (1) What actions, words or phrases help to build hope and support?

Words of Support and Encouragement; Words and Actions of Partnership; Education for New Providers and Refreshing Education for Experienced Providers; Navigation and Clear and Honest Communication about What to Expect and the Need to Transform Care as Demonstrated by the Butterfly Project”.

  • “You’re doing a great job! Try to increase confidence in the person.”
  • “Provide caregivers with social workers, counsellors, navigators for the system.”
  • “Although we want to focus on creating change - it is important that we also focus on the positive elements and good things.”
  • “We are here to help you and your family on this journey. Let's work together to make every day the very best it can be.”
  • “How can I help?... communicates a partnering attitude for the caregiver, it also gives the patient a sense of being heard and still in control.”
  • “We need words of encouragement. As caregivers we are never sure we are doing enough or have we thought of everything?”
  • “Provide appropriate and regular education for new providers and sometimes more importantly refresh skills and knowledge for more experienced providers.”
  • “Having someone there to help navigate through various legs of the journey was very helpful...especially during the time of moving out of our home to LTC.”
  • “Having recognition that the going is hard, particularly when the loved one has reached a new stage and doesn't recognize you or is very angry at you for not taking them home.”
  • “A hug goes both ways. Staff sometimes need a hug when things get tough as much as we do.”
  • “We need support and a person that can assist in making connections to other sectors.”
  • “There is the need to feel like you are in control - (at least a little bit) having that navigational knowledge makes us feel a little less lost and afraid.”
  • “Families need a partnership with the provider. They don't want to be talked to. Share options - not tell them it is one way only.”
  • “Fostering hope...for me it is getting assurance that the person you love that is going through the stages of dementia may change in the way they look, the way they speak, the way they express themselves but by learning other ways to communicate, to reach deep inside that person you can still tap into the person they were before dementia.”
  • “It's like a dance with the partner we have to make sure we move together but not to step on each other's toes.”
  • “I think that fostering hope is tricky depending on the condition at hand. Family members can be frustrated in long-term care when they don't see improvement in their loved one suffering with dementia. It can be about expectations – honesty and education are essential.”
  • “I like some of the approaches Teepa Snow uses. She acknowledges it is "hard or difficult. It acknowledges a discomfort in each person and the pain they are experiencing."
  • “When I think about the person who encouraged me the most and gave me hope at the beginning of my journey, it was an old friend of my mothers who loved her and knew her well. She really knew and appreciated the woman we were losing (acknowledging their personhood and dignity). Her mother had passed away from Alzheimer's. She told me it was going to be hard, shared examples and difficult stories - but instilled in me the sense that what I was doing as a caregiver was really important - even a privilege as I would support this wonderful woman in her final years.”
  • “A language of sharing the job not being pushed aside because we are not professionals.”
  • Navigation was identified in the Provincial Dementia Strategy as a priority. Now, all Alzheimer Societies across the province will have a First Link Care Navigator in place for the purpose of linking with follow up. Just FYI.”
  • “I think those First Link Navigators could play a role in fostering hope - connecting people with services and resources and equipping them with what they need along their journey.”
  • “The navigator sounds fabulous - a brochure here along with this listing questions that care partners might want to ask - sometimes we don’t even know the questions.”
  • “In offering choices- don't overwhelm. Would you like..? If, no, then another choice, or only 2 choices.”
  • “We have one PSW who I love to pieces. She takes the time to make sure Mom is dressed nicely, hair combed, matches a hat with her outfit, puts on some lipstick. Now that is going the extra mile.”
  • “Sitting down and having a break with the resident. I love this. The person opens up and it’s like being at home.”
  • “When I see people going the extra mile, I feel that there is recognition that others are seeing my Mom as a person who like anyone else has feelings, cares about how she presents herself.”
  • “Consistent good communication within the home, hospital, care place...all helps to create more hope and resiliency.”
  • “One of our LTCHs has undertaken a transformation "the Butterfly project" it is amazing. The link is:​ly-home/
  • “I believe there are very good staff out there. They give good eye contact, work "with" the person, encourage and support abilities and include them in decisions.”
  • “It really this is about relationships and understanding the human spirit. Kindness can only go so far.”


Key Findings: Question (2) What actions, words or phrases damage hope and resiliency?

Words and Actions that Promote Stigma, Ageism and Lack of Understanding; Language and Actions That are Disrespectful or Do Not Promote the Person’s Dignity and Personhood; Language or Actions that are Punitive or Threatening; Talking To the Person Instead of With Them; The Need for Dementia Education; Words and Actions that Lack Empathy and Compassion, The Need for Support for Family Care Partners, Lack in Clear  Communication About What to Expect and Inconsistency and Lack of Follow Through.

  • "The word “demented” … it's better than it used to be, but I never will get used to it and always object when it is used. People need to know its offensive even if it is a "medical" condition.”
  • Baby talk, like "Do you need the potty?" REALLY?!”
  • “Don't do that!!I think your father is severely demented…That's not the way we do it here.”
  • “This comes back to my earlier point about refreshing our more experienced staff. The colleges are doing a good job of bringing patient centered language into their curriculum.”
  • “When I questioned how much sedative medicine my mother was on in the hospital, I had a doctor say, "She needs it or she will get up and you want her to break a hip?"
  • Do you want him to hit someone else? It's not within our control yet there is such pressure!”
  • “The words should be inviting. Would you like to come with me? Not "it’s time for your shower, let’s go".
  • “Speaking loudly to the person with dementia, not giving enough time for them to respond before doing something "for" (to) them.”
  • “Talking over the person while giving care. I hate this. It is like they are not there.”
  • “Family doctors don't understand dementia either. More education is needed. Our experience was that we were on our own.”
  • “If you put the person first and listen or observe - not just jump to conclusions. It takes time and patience.”
  • “Support for families supporting loved one with dementia means helping them to deal with friends or family who do not understand the disease and the complications. Ask "how is your mother doing?" when it won't improve.”
  • “Or any kind of behaviour is blamed on the dementia when it could be an underlying medical condition (instead of searching for things like pain or delirium or other issues).”
  • “When expectations are not shared and explained properly it can damage hope and resiliency. A big gap I see is when people have had parents or spouses in Adult Day programs and then move to Long Term Care - their expectations are way out of sync with the differences that exist between the two. I see a lot of grief and hurt in people who have not been educated about what to expect. One woman said, “I thought my dad was moving to into a 24/7 Adult Day program when he entered LTC, but I couldn’t have been more wrong.” This took several years to overcome.”
  • “Expectations are something that needs more attention/education. I don't remember taking a workshop about LTC education. Care Plan was new and I did not know about it ahead of time.”
  • “Lack of education and knowledge of what to expect  -If we know more, we feel more prepared, less alone and afraid...and more hopeful and equipped to face what lies ahead.”
  • “Education: it was a journey into the unknown and not knowing what to expect on that day in visiting my mother. Each journey is unique. Part of the education is having what is needed at the right moment.”
  • “Punitive language: even the process of application is a little threatening. That is, if you turn down the offer, you go to the bottom of the list etc.”
  • “I would say not being consistent...promising to do something (a plan of care or activity) and then just not following through. As a family care partner I stop trying to be creative because I feel like no one else is when that happens….for example, recharging and IPOD or other electronic devices seems to be impossible in spite of a very carefully worded request posted. It leaves the message that staff doesn’t care or can’t be bothered.”
  • “We try to communicate with staff small things that would make a big improvement in our loved one’s lives, but usually it takes repeated efforts to effect a change. Simple things like “don't us the suspenders until that rash on his back resolves, use a belt.” Or “No rice or milk until the constipation is better” or, or....that damages hope and resilience in family members. Trying equals being more frustrated and angry – it’s easier not to try sometimes.”
  • “The Alzheimer Society needs to know that the I POD idea does not work in LTC environment...unless they can find somehow to make it part of the job and as it is now it's an "elective".”
  • “The tone and the pace of speaking is critical - but staff don’t seem to have the time or the inclination.”


Key Findings: Question (3) What strategies have you used to remain hopeful and resilient throughout your journey?

Asking for and Accepting Support from Friends, Family, Alzheimer Society Support Groups; Getting Enough Rest; Knowing Your Limitations; Meditation, Prayer; Learning as Much as Possible; Learning to Live in the Moment and Seeing the Hope and Potential for Change.

  • “I think, from my experience, that the feeling of being supported and knowing that you are not alone is so important. It's the knowing that others are experiencing similar challenges and the helplessness that can accompany the journey.”
  • "No person is an Island"
  • “There is an old saying "It takes a village to raise a child" In this case it takes a village to walk this journey.”
  • “Sharing the load, we all have things to bring to the caring table professional, personal....we all need to be better listeners.”
  • “I see some great care, but on the other side of the coin, someone else feels it is necessary to have an incontinence pad under her even though her wheelchair is already equipped, the lift pad under her as well, I feel like asking "would you like all that bunched up your back end” ?”
  • “Living in the moment, like a patient with dementia. Letting the details take care of themselves.”
  • Meditating before you get out of bed and again in the late afternoon...15 min. makes all the difference!!
  • “It is hard to live in the moment as we are always planning our next move. Meditating and looking after ourselves is probably most important as those are things WE CAN CONTROL.”
  • “Reaching out for help and getting enough rest.”
  • “Thanks for help from Alzheimer Society.”
  • “The Alzheimer Society is a model for providing hope and resiliency.”  
  • “I remain hopeful that the ministry is finally listening to us and as Dementia becomes more prevalent our voices too will get louder and stronger.”
  • “With the recent Dementia Strategy initiatives I feel more hopeful than ever before. I believe people have been listening to us and other family care partners!! These are exciting times.”
  • “Finding time and energy to look after yourself, meditation, art, massage, walking be with friends....whatever it takes to have some kind of a life outside of caregiving.”
  • “Knowledge, control and how to effectively advocate. Advocating seems to be the #1 job.”
  • “It is okay to cry, it is okay to be mad, it is okay to laugh, it is okay to find the humour in something that is not funny.”
  • “I am hopeful that at the end of the day I will have done everything I can to respect my husband’s personhood and value him as my partner. I have to be sure to nourish myself in order to do this. I have also had to hire a companion for 8 hours a week to ease me.”
  • “Humour is a coping mechanism, I found.”
  • “Humour is key. You might as well laugh as cry.”
  • “We all must be advocates as best we can; the more we speak up the more people will be forced to face this dilemma.”
  • “We have to give ourselves permission to stay afloat, whatever that takes for us to do so.”

For information about how you can participate in future Lived Experience Café chats or Lived Experience video/teleconference advisory conversations, visit the Ontario page on  or email Sharon Osvald, BSO Lived Experience Facilitator at . Sharon can also be reached by phone at 613-475-9943.




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April-May 2018 SE Ontario Lived Experience Resource Exchange Summary

April- May 2018 Resource Exchange Summaries


This Lived Experience Resource Exchange for April to May 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 73 people from across all of South Eastern Ontario. 58 people were spouses, adult children, family or friends and15 people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in April – May 2018 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.

April - May 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • “The peer to peer support we get in Alzheimer Society support groups really help. Friends stay away after you get Alzheimer’s. It can be such a lonely feeling.”
  • The VON in-house respite is allowed to take the person in their car for a drive. This is a huge benefit to me and my husband.”
  • “I live in a long term care home, and they are very good to me. I like to make jig saw puzzles. I’m quite good at it and built a tray to keep my puzzles under my bed while I am making them. I can’t be part of every activity, but they take great care of me.”
  • “The thing that holds me together is the support groups. The friendship, fellowship and sharing of ideas really helps me to cope and not feel so alone in this.”
  • “We’ve been provided with assistive devises on trial to help keep us safer at home. Some of them are not being used – but other ones (like the arms on the toilet are very helpful.”
  • “We had a great experience with our doctor. He was very helpful and referred us to the Alzheimer Society right away.”
  • “Have a good relationship with your doctor is key. I was amazed at how wonderful our doctor was. Communication was good and so was the follow up.”
  • “Community Care drivers and Meals on Wheels have been very helpful for us.”
  • “We have been able to take part in a research program through Queen’s University and Providence Care and have found that to be a very positive experience.”
  • “Our long term care home just started a wood-working program and are starting to gear more of the activities towards men – which is something my husband is really enjoying.”
  • Participants referred to Care Essentials, a four week long course offered by the Alzheimer Societies as being very helpful in their knowledge about coping with dementia as well as the IPOD music program. They also spoke highly about Friendly Call – a volunteer that phones to check in on them and ask them if they took their medication etc.)
  • Participants felt very supported by home care and their adult day programs – the only issue was the lack of consistency in sending different PSW’s each time and changing up the times of care to suit the needs of the agency.


  • “Respite continues to be a real need. Caregivers need more help and support. It is such a heavy load carrying everything all of the sudden.”
  • “I think loneliness is one of the biggest problems – we both feel so alone.”
  • “We definitely could use more respite. I can’t leave my husband long. Friends come, but only for an hour.”
  • “Looking ahead to the future is very difficult right now. It is like looking into a very cloudy crystal ball. It is scary when everything is so uncertain; it is not an easy to live with this not knowing if and when you will end up in long term care.”
  • “I am so tired from all the running around I do – taking him to appointments, to meetings to adult day. I don’t have a life of my own any more. I feel like the Social Coordinator and just managing his dementia is a full time job. Our calendar is full.”
  • “Hospital Emergencies are not a good place for people living with dementia. My husband had to go there a month ago and he was given no food or water. It was not a good experience at all.”
  • “Day programs are great but they need to be geared to different mixes of people – to be flexible and geared to the person.”
  • “I think respite needs a broader definition. What is rest for me might not be rest for you. It isn’t just baths and dressing a person.”
  • “I’m still working full time and looking after my husband who is at home with dementia with no home supports. We’re coping with phone calls and my employer is very flexible – but I won’t be able to do this for long.”
  • “Caregivers need education and navigation!”
  • “I desperately need a break, but having people come in to stay with my husband just didn’t work. He felt like he had to entertain them which stressed him out and just caused more behaviours.”
  • “The support I get from Veteran’s Affairs is very helpful. I get a small pension, housekeeping, transportation and some nursing care.”
  • “We had trouble getting our doctor to see that there was an issue. He didn’t seem to want to recognize the symptoms. I’ve been a caregiver for 11 years and I am exhausted. I wish there was more counselling for caregivers around ways to cope…it’s like you go through the ringer with them.”
  • Ageism: “We had a very difficult experience in the hospital My mother was 91 and she had dementia (they kept saying that to us) and so they felt she wasn’t worth treating. She’d fallen and broken her arm… and her arm was displaced and the doctor did not come in to see us for nearly 24 hours. They didn’t do anything. They didn’t give her pain medication, they didn’t put it in a sling, they just left her. She was in excruciating pain and ended up having a massive heart attack. They need to not dwell so much on that you are old and have dementia, but give the family choice. They left her all alone in her room in such pain and distress.”
  • Department of Transportation: People expressed they felt people who wanted to keep their licenses but have had them taken away (for good reason) are being taken advantage by “DRIVE ABLE” “My biggest challenge for the last three years has been around the issues of my husband fighting the loss of his driver’s license. My huge huge issue and I don’t know who is going to help me with this the whole Province of Ontario and Department of Transportation is out to lunch…They don’t handle the people with dementia with any kind of dignity or care. They also make it extremely difficult to get their license removed and they TELL the person that you can go to “Drive Able” which is the worst thing ever! Three times my husband has gone to Drive Able to the tune of $800.00 a pop – and be told her is “borderline” and can come back again. They are just taking our money and giving him false hope which is cruel. I’ve written to the Minister of Transport in Toronto and I have been every where and done everything with no help. Drive Able is a private company just making a fortune. My husband failed the cognitive test all three times but they tell him he can come back and try again.”
  • Communication was mentioned as an ongoing issue in all sectors. Participants also felt all staff and volunteers working with people living with dementia needed more behavioural supports training to provide help without resorting to medications. The importance of using personhood tools to “know” and communicate on behalf of the person who could not speak for themselves was also mentioned. “Our home is just beginning to understand what my husband needs and how to work with him in a way that works. They used to order him around – which of course just does not work with someone living with dementia. You can’t order them to do anything – you have to learn to work with them. They would argue with my husband too. He is in the here and now…that just made everything worse.”
  • “Issues around driving and removing a person’s driver’s license continue to be a program. One spouse stated her husband refuses to go to the Memory Clinic because: “That is just the place you go for them to take away your driver’s license. They also talked about discussed the challenges of their family member being on medications that are prescribed at multiple times during the day because different doctors have described them in this manner –rather than looking at their medications in a holistic manner and planning times in a less chaotic way.”
  • It was also mentioned that some of the Alzheimer Society Adult Day programs are not funded by the LHIN or are not dementia specific and that this is a need.”

Other Observations:

April 3, 2018 SE Ontario Lived Experience Chat Question: Feedback received from eight lived experience advisors who live in Kingston, Smiths Falls, Brighton, Trenton and Kingston.

BACKGROUND:  This month’s chat topic came out of conversations with different members of this lived experience network, it is called: “If I only knew then what I know now.”

QUESTION: As family care partners, most of us are learning about dementia, complex mental health, substance use or other cognitive impairments and the health care system and the supports us as we go along. I often hear people say “If only there were a manual” and “If I only knew then what I know now.”

On April 3, come prepared to share the important lessons you have learned  – both in times of crisis and just day to day lived experiences – with other family care partners and also to the health care system as a whole, so they can be better prepared to support older adults and their families.


Helpful Support and Services:

  • “From diagnosis to reality...Thank God for the Alzheimer about the dementia and resources available.”
  • “For us, the Alzheimer's Society is the only bright spot in this scenario.”
  • “The transition for my family member was actually was quite smooth. We had the Mobile Response Team provide support for the transition and that worked beautifully; allowing my husband and his brother permission to leave that first day. The transition for the family was exhausting.”
  • “Where my wife is I find that nearly all of the staff are caring and respectful, I think I am lucky in the choice of LTC home.”
  • “So far we have had an extremely positive experience in LTC.”
  • “I think that why my husband’s transition was so smooth was because the Director of Care and her assistant actually came to the hospital where he was and sat and talked with both of us for almost an hour. They had a good picture of who we were."

Difficulties, Emotions and Decisions:

  • “My problem is the guilt I feel every time I leave after visiting, my wife doesn't understand why I can't be with her. I've tried to find a facility that will accommodate us both, but so far am not successful.”
  • I wish my wife would adjust. She is not happy which is why I got in so frequently to visit to supplement for the staff shortage and look after the details as I can’t expect them to care for her the way I did at home.”
  • “We need a kinder and gentler system when it comes to assessments, care and transitions. We have to slow things down to do things well.”
  • “The transition from home care to Adult Day to Long Term Care was a nightmare. Before LTC I was part of the team that kept dad as part of the community and active and feeling like he was a valuable member of society. I felt rejected as member of the team with LTC and was saddened at the lack of respect for him as an individual.”
  • “My wife and I discussed this earlier and one thing we identified was that we would have done more travelling when we were able. We both love to travel and didn't realize how quickly we wouldn't be able to do that. She has a visual spacial impairment because of the disease and gets confused and anxious in unfamiliar surroundings.”
  • “I honestly struggle with this question. My mother in law was just admitted to LTC through a crisis admission and I keep reflecting and asking what we could have done differently to make this a smoother transition. I am not sure I could have done anything differently for my m-i-l because she was so resistive to the acceptance of the diagnosis as well as the support required. She refused everything despite us knowing supports could have kept her independent longer and having her name on the LTC list much sooner would have avoided the crisis admission. Despite my knowledge of the system of care as well as the disease process, I honoured her wishes; respected her dignity and we still ended up in crisis.”
  • “I knew dementia would affect their memory but I had no idea how many areas of our life it would impact…like travel and socialization… and the anxiety part and the changing sleep patterns all those things make one’s life really small.”
  • “I was surprised by the lack of choice and control. It all just happened and there was no way to slow it down or change it.”
  • Because of the structure and design of LTC, I felt I was no longer part of the partnership and the circle of care. The ratios in Adult Day are 1/5 approximately. In LTC they are so stretched it is often all they can do to get through the day.”
  • “I have had great support from the local Alzheimer Society and their support groups. We have just gone through our first assessment with Home & Community Care. I was very impressed with their professionalism and prompt response and follow up. I must admit I was very skeptical when I contacted them but their response exceeded my expectations.”
  • “I didn't fully appreciate the impact that her limitations would have on me. We had both had pretty traditional roles in the household and fairly quickly I was faced with a whole bunch of new tasks for which I was ill prepared as examples cleaning the house, doing the laundry, preparing meals, shopping for groceries and gardening (this had always been her hobby). It also meant I had less time for my activities golf, curling etc.”
  • “No matter what is done to smooth the change, it is a radical difference when you move from your home to LTC.”

Lack of Education and Information:

  • “The biggest thing I did not know about - that I wish I knew - was delirium! Who knew a Bladder infection or dehydration could send someone on such a "bender"? That is one thing I wish I knew about before we took mom to ER. Everything we were doing to make her well was actually making her sicker because we didn’t know what we were doing. That will be something that always bothers me about this journey.”
  • “We met with two doctors and two neurologists over a span of two years before we got a diagnosis all the time knowing that there was a problem. It shouldn’t take that long but there doesn’t seem to be a well-publicized clear path that leads to that end point.”


  • “Naps, that’s my one serious piece of advice ….take naps!”
  • “Be quick to forgive yourself and others…move forward so things will get better. Compliment jobs well done and give yourself lots of pats on the back.”
  • “It is hard to think about having a rest when there is so much to do in a short span time when they are at day program, but looking back now I think it could have helped me to think more clearly. I don’t know how people do it when their loved one is home all day and needing constant attention as my husband did…he would get anxious immediately if I was just in another room.”
  • “I frequently hear members of my support group say that they waited too long to get help…whether it was hiring a house cleaner, getting PSW help in the home or transitioning to a LTC home.”
  • “A support group is key for sure!”
  • “Sometimes you are honouring your loved one’s wishes (not accepting help) at the expense of your own health. We always say we wish we had insisted on supports. It may not have changed the outcome but it may have changed the tumultuous journey.”
  • “As a good friend always reminds me: Don’t should all over yourself.”
  • “I’ve been told it is worse for men. We want to be strong and fix things so we are slower to ask for help. We think that may be why there are fewer men participating in our “men’s caregiver support group”. It really is too bad that some people try to struggle through on their own.  I have learned more from that group than almost any other single source.”
  • “Perseverance and advocacy is key.”
  • “You will have to advocate and educate staff about dementia and your person’s needs and issues. They just don’t know what they don’t know so don’t assume they will.”
  • “Remember the importance of rest, self-care and asking for help earlier – not after we are totally burned out. Let go of guilt and walk in the peace that you are doing the best you can with the resources that you have. Take one day at a time.”
  • “Learn as much as you can – from each other and through resources that are trustworthy. Peer to peer support and shared learning is extremely helpful.”
  • “Ask your friends to help!”
  • “Never quit advocating.”
  • “You can never truly prepare yourself ahead of time for the shock that comes with dealing with this disease and the consequences of it.”
  • “I have also learned to be more charitable and live in the moment to survive without losing my mind and that a sense of humour will serve you better than a chip on your shoulder.”
  • “We are trying hard to maintain social contacts through things such as church, walking groups, community get togethers (we live in a retirement community), getting out to theatre events, shows and dinners with friends.”
  • “We need to have grace for people and realize there are often reasons we cannot see that lead them to act the way they do.”
  • “We need grace for our loved one; for ourselves; for family members who cannot visit; for the system of care that can only do much.”
  • “We need to keep advocating, learning and working to bring change – but with a mix of grace and a sense of humour – both for the health care system, our loved ones and even ourselves.”

April 2018 Provincial Lived Experience Café Live Chat Event Summary:


Our April 18, 2018 Provincial Live (typed) Chat event on included eleven lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury) as well as the input of participants from Trenton, Brighton, Kingston, Chatham, Toronto, Owen Sound, Perth, Ottawa and Mississauga, Ontario. Our topic question was:

Topic: Some people develop symptoms of cognitive decline or dementia earlier in their lives (i.e., before the age of 65). 

1. How do you think the experience of individuals with early onset dementia and their family care partners would be the same or different from those who develop symptoms later on?

2. What unique challenges do you see for individuals with early onset dementia and their care partners to access services in your community?

3. Do you think there is a different stigma for this group?

Key Findings:

For Question #1: How do you think the experience of individuals with early onset dementia and their family care partners would be the same or different from those who develop symptoms later on?

Key themes identified:

  1. Children: Families living with early onset dementia are often still caring for children, teenagers or young adults in University or College who still needed parenting, when they now need to be cared for themselves. A young carer often has to choose between their own life plans/dreams and providing support to their parents with little training or emotional support. 2. Finances and Loss of Employment: Families living with early onset dementia often have to leave employment before they are financially prepared. This often affects both the income of the person living with dementia and their family care partner.
  • “I imagine that it is even more challenging for an early-onset patient and the caregiver. The patient may be diagnosed while still employed prior to retirement, and the caregiver may also be working and additionally may be caring for their own young children.”
  • “Although no one is EVER prepared for dementia, it is especially challenging for younger families who are still working and have younger children and are less established financially.”
  • “Financial challenges would be a big one as well as caring for their own children.”
  • “This is incredibly difficult for younger caregivers as they are trying to create their own life.”
  • “I believe the people with early onset are at a different life stage and so the challenges are a bit different. I also think that our services are specialized and very attuned to the older adult. The early onset age presents with different challenges such as employment; family caregiving etc.”
  • “I was only 15 when my Mom was diagnosed, so I was in the dark about a lot of her symptoms. But it got to a point where my Mom was no longer able to teach (she was a high school math teacher). Her students were complaining and it wasn't a great situation in the end. That is really what started the ball rolling on a diagnosis.”
  • Early onset dementia is difficult for the children. It can cause guilt and tension especially between siblings. Within my own family we have all taken turns going away from school. But keeping up with caregiving responsibilities can be difficult with exams to study for!”
  • “Young or older, even when someone finds a program the transportation costs and logistics can be a challenge.”
  • “It can hard for people who are physically fit and mobile to qualify for transportation to programs. This is especially true for younger populations - and they live much longer with the disease.”
  • “I see many caregivers struggle to coordinate care and maintain employment. Day programs do not run all day and do not encompass the caregivers entire work day. Coordinating all of the logistics can be a struggle.”
  • “Not possible to hold down a job!  Also, early onset ensures a longer stretch of caregiving. I still wonder about the conventional thinking that Alzheimer's patients have an average life span left of approx. 7 years. My Mom was diagnosed at about 80. Now she's 93 and still around, relatively strong.”
  • “I hear all the time from people that even with Adult Day, they still had to quit their jobs just to coordinate and manage everything - especially transportation and early/later hours.”
  • “I think a dementia hot line would be helpful for any age…but a hotline for young caregivers to “vent” frustration, anger, sadness might be useful.”
  • “Early/young onset is likely much more unexpected. It can interfere with employment and force “early” retirement which is not like any retirement we might have imagined. The care partner definitely doesn’t retire but takes on a whole new demanding role. Some of us have preparation based on careers in health care but for some it is a brand new role. Finances may be difficult for some adding unexpected strain.”
  • “GAIN teams and Memory clinics are great too if you have them in your area. They have practical advice and people who really know their stuff. However I know for early onset care partners this requires them to have flexible employment so they can take time off work to go to these appointments.”
  • “As a person who has worked for many years in the dementia field, I am very humbled by now being a caregiver and working full time. I thought I knew things - but I didn't.”
  • “I miss being “mothered” and am sad my mom can’t experience her grandchildren…that must be 100 times harder for young families who still need to be mothered and raised.”
  • “I think the hardest part is knowing my Mom won’t be at my wedding or around when I have kids. That is very difficult!”

 For Question # 2: What unique challenges do you see for individuals with early onset dementia and their care partners to access services in your community?

Key Themes Identified:

 1. Challenge Getting a Diagnosis; 2. Difficulty Accessing Services and Treatment; 3. Difficulty Accessing Age Appropriate Services and Supports; 4. Lack of Counselling, Emotional Supports and Education for the Person and Family Care Partners.

  • “Care is also very senior based. My Mom is only 57 and she attends a Day Program that is named "Senior Life". Getting her to agree to go to a day program was so difficult because she felt she didn't belong there. No one else was close to her age at all!”
  • “It was a challenging time for sure. I didn't really know what was going to happen, none of us really did. And I found is so difficult to tell my high school friends about my Mom.”
  • “The people with early onset don't necessarily fit with the older adults so services/programs are not necessarily a good fit.”
  • “Also challenging for attending an Adult Day Program. Most clients there are older.”
  • “My Mom's Day Program is fantastic and I know she has gets to do a lot of fun activities and amazing crafts. Unfortunately, not everyone is lucky enough to have access to amazing services, and sometimes finding them is so difficult.”
  •  “Thank you for talking about the great program your mom attends. There are some very person-centred day programs that focus on personhood to ensure meeting the person where they are at no matter what age.”
  • “Adult Day programs and LTC do their best to accommodate people who are younger - but it is not easy.”
  • “Another large challenge is getting a diagnosis. It is often overlooked or chalked up to stress or other situations/illnesses. It's not always what people are expecting, not even doctors.”
  • “Geriatric services are the most experienced with dementia. One isn’t usually eligible until age 65 so immediately the early onset are in a difficult position. This may limit referrals to mental health services that could facilitate proper medications to improve quality of life for both the patient and care partner -it’s not unusual for the younger onset to be otherwise quite healthy. This adds an unexpected twist that the length of the illness may extend for many years. However when one is losing one’s mind, an extended life expectancy isn’t necessarily a plus.”
  •  “My husband was diagnosed with a dementia at age 63 (considered early onset) it was tough getting services because he fell in a gap. Also there is a sort of denial when someone is younger that maybe it's not dementia....this can be especially true for the person who has the diagnosis....though I find myself still wondering (6 years later)....maybe it's Lyme or, or…”
  •  “We really don’t have suitable care facilities for the young/early onset group. We all generally “hang out” with our own age cohort. The average age in Our LTC facilities is well into the 80’s. Not easy for people in their 50’s and 60’s to feel comfortable.”
  • “Getting a diagnosis would be a challenge. Given your mom's age, I wonder how many times things were chalked up to menopause; stress; midlife etc. You are so correct, it is important to listen to the person's experience as there are no blood tests to confirm a diagnosis….they would be looking for everything BUT dementia.”
  • “My siblings and I were so busy with sports one night and other activities the next, appointments and other family commitments it was so easy to say it was stress or just a mistake that she forgot an appointment or thought it was a different day!”
  • “At first, it was depression and coupled with that (typical) lethargy......I thought there are reason for that behaviour it wasn't until 2 years later that (and as I look back now) that he began to spend money in ways he never would have before. Then executive function issues became very apparent and hoarding plastic bags and Kleenex and paper napkins along with confusion, getting lost and easily overwhelmed.” (Denial and Disbelief).
  • ‘An additional concern is ensuring that kids and teens who are affected understand and get support. Not only do they lose a caregiver but also become called to additional responsibilities. This is particularly hard as early onset starts as an invisible disability.”
  • “Diagnosis would be harder early on. Also, transportation is a big issue, esp. for the caregiver trying to get themselves ready as well, to start their own day.”
  • “Our clinicians are counseling young family members which are out of their realm of usual counseling. The young caregivers have different issues than caregivers of a different cohort.”
  • “Young carers don't have very many services that are geared specifically for them! But also transportation would be needed for many young carers to get to those services. It can be exceptionally difficult to make connections with other young carers and thus you feel very alone.”
  • “This disease isolates both the caregiver and the person with dementia AND caregiving is a full time job even early on just trying to navigate the system.”
  • “And a layer of complexity, it can be difficult for young carers to attend school and further education or pursue career paths due to caregiver or maybe just feeling guilty about not being around.”
  • “The responsibility of becoming a caregiver sort of hijacks everyone’s life, but as a younger person just beginning your adult life it is like getting sideswiped. It impacts your whole future in a way that older adults could never fully understand.”
  • “It would be easier if they had a “dementia hotline” you could call to get information on services or answers to questions. I know they have similar ideas in Europe.”
  • “They are to be opening a similar village (to the one in Holland) in BC, but the costs are going to be very high and it won't be accessible to a large majority of the population - especially if you look at it through the lens of someone with young onset that may not be financial stable.”
  • “Not many young carer support services that I know about, however there is has been more talk about young carers on recent. In Waterloo, I work with a Young Carers Project that provides education on the existence of young carers. We have been working with the Change Foundation and they are really helping us get more recognition for this invisible population!”
  • “In my experience as a clinician, often the first to notice a change in the person is their employer/co-workers. And when concerns are brought forward, it is difficult for the family. In terms of responsive behaviours, I can't imagine not working at my age and having my family try to convince me that I no longer work would be a challenge for them.”
  • “We were connected early on but the resources weren't really geared towards young onset and my siblings and I didn't feel very connected. Luckily we have a great geriatrician, who gives us a lot of support. Otherwise we just go with the flow and learn as time goes on. I have learned a lot through my work with MAREP too!”
  • “One other point to make. There are not always the same services available in every LHIN. Halton/Mississauga had many services which made it easier for us….this would not be the case in smaller or more remote locations.”
  • “Some regions also have to plan services to cover a larger geographic area which can be challenging… In rural areas, some resources are scarce. We have to do more with less.”
  • “Intimacy isn’t talked about very much. For some, changes in this part of the relationship may be a signal that something is wrong. It’s unlikely that dementia is thought of. More likely is concern about the “health” of the relationship being at risk, often after many years.”

For Question # 3: Do you think there is a different stigma for this group?

Key Themes Identified:

 1. Isolation and Loneliness for Both the Person and the Family Care Partner; 2. The Need for a Public Education Strategy and 3. The Stigma linked to long term care and “old age homes”.

  • “I would think the social issues are different for folks with early onset. The diagnosis is not as acceptable (for lack of a better word) than it is for someone who is in their 70’s or 80’s.”
  • “Is it stigma or just lack of knowledge?”
  • “I think there is stigma for all ages. Earlier means more people see it or don’t see/understand it.”
  • “I believe people don’t know what to do with it. Re: Stigma. Fear or ignorance speaks to the need for education.”
  • “I am friends with 90 year olds who do not want to go to the "old age home". Can you imagine how it must feel for the person living with early onset dementia to hear that you have dementia and are more than likely going to go to Long term care and also for any care partner to be robbed of their golden years? …The stigma of Long Term Care is an important aspect.”
  • “Just the nature of the disease can be so isolating – well not the nature of the disease, but how people react to it.”
  • “Yes, Isolation and Loneliness…both the person and their care partner can feel very alone and misunderstood.”
  • “We find friends and family are not coming to visit because their perception is that we are too busy and too tired to entertain – this speaks to the isolation.”
  • “Friends disappear. Socializing becomes difficult. Caregivers need more support and respite.”
  • “Many people ask how the person is doing, as though they will get better…It may be those with no experience don’t know what to say to both the person with dementia and the caregivers. It makes them uncomfortable and they may not want to say or do the wrong thing.”
  • “I wanted to affirm the significant stigma experienced by the individual and family members. In this regard, an area of assistance would be helping families with the language to express what is happening and what sorts of help they could use with extended family, church communities and other community groups. It is often hard to articulate.”
  • “Perhaps as an advisory we can set up the message to help people that do not know - understand?”
  • “You know many people don’t understand mental health issues. The “Let’s Talk” campaign is shedding some light. Epilepsy is another thing that is not understood. We need a campaign for this!”
  • “The Alzheimer Society has a campaign called "Yes I have dementia. Let me help you understand."​?s_locale=en_CA&utm_source=websit​e&utm_medium=hotspot&utm_campaign​=AW2018
  • “A Public Health campaign could have significant influence…television, commercials, billboards, YouTube videos…the list of opportunities is long!”
  • “I am in a co-op program and I have the pleasure of working at the University of Waterloo for the Murray Alzheimer Research and Education Program (MAREP). I am doing my second co-op term there now and in my first term I was introduced to the “Young Carers Project”. They do not support young carers directly, but it is more of a working group to increase awareness in KW.”
  • “Those elder abuse commercials were quite impactful…perhaps we need a focus of public education like that. This could be another opportunity to explore and search for funding.”
  • “I find many people think dementia is just memory loss and do not have any understanding about responsive behaviours. Families are dealing with loved ones who really are not safe to be alone for long periods of time.”
  • “People are also "afraid of dementia, like they use to be scared of cancer.”
  • “My husband was let go from 2 jobs (that had never happened in his career) but no one seemed to feel that his spouse (me) should perhaps be informed and some of his colleagues had known us both for years!! I was really angry about that.”
  • “I’m not sure there is stigma, however gradually you can’t participate with the normal activities of your friends so isolation can set in. And of course, we can’t forget the impact on the “children” of early onset who are often in their 30’s and 40’s and busy with careers and young families of their own. All adds up to a very stressful time.”
  • I will always remember a man in one of our support groups who is living with dementia. He looked me in the eyes and said, "As soon as I was diagnosed with Alzheimer’s, I became invisible. No one talks to me, asks me what I want or think as if I can't think or speak anymore." It stuck with me. We can so easily overlook a person - and if they are young - that's a long time to be invisible….invisible and isolated.”
  •  “Talking about campaigns, using popular media is a great way to raise awareness. A few documentaries have come out in recent that highlight young carers. One specifically about dementia is called Much Too Young, which follows 4 families with early-onset Alzheimer's disease. (My Mom and family are in this one - so a bit of a plug to go watch - it's great - but I'm biased.)”

For information about how you can participate in future Lived Experience Café chats or Lived Experience video/teleconference advisory conversations, visit the Ontario page on  or email Sharon Osvald, BSO Lived Experience Facilitator at . Sharon can also be reached by phone at 613-475-9943.


May 1, 2018, SE Ontario Lived Experience Chat Question

 Feedback received from nine lived experience advisors who live in Brighton, Belleville, Perth, Kingston, Gananoque and Brockville.

BACKGROUND:  In April 2017, the Ontario Government announced their Ontario Dementia Strategy with approximately $100 million allocated provincially to support people living with dementia, their care partners and their families have access to the resources and services they need to live as well, and for as long as possible at home and in the community. 

QUESTION: In anticipation of each LHIN receiving notice of their portion of this provincial funding, the South East LHIN & leaders across the system of care would like to hear the perspective of Lived Experience to ensure system planning aligns with and supports the needs in the community:

  1. What do you see as the biggest gaps in community services in our region?
  2. What do you feel would be the most helpful to allow people to live at home safely for as long as possible?
  3.  What are some innovative services, supports, programs or approaches that you are aware of that should be considered to help people living with dementia and their families?

Key Findings to Question #1: What do you see as the biggest gaps in community services in our region?” 1. Access to Transportation and the Cost of Transportation; 2. Geriatric Emergency Room & Hospital Support; 3. Education for Family Care Partners and Public Education; 4. Respite and more flexible support options; 5. Navigation; 6.  Better Care for Early Onset; 7. BSO Mobile Support in the Home and Community and 8. Counselling and Social Work for Families.

  • “Transportation is an issue I hear about all the time in our support groups – and the difficulties of getting their family member to the day programs. Maybe we need satellite day programs at community centres?”
  • “Gaps include day programs in smaller communities are only available 2 or 3 days per week and have quite a large area that each program covers. Huge problem is also cost of transportation.”
  • “I live in a rural setting and volunteer for a local senior’s organization. I see transportation being a problem for many seniors especially in winter. The organization where I volunteer offers many social activities, but many seniors can't attend because they don't have transportation. There are some volunteer drivers, but not enough. In the city, I would like to see bus routes extended to streets off of the main routes. Perhaps smaller buses could be used for these routes. This would mean the buses would be able to drive to the door of seniors. Therefore, more funding is needed for transportation services, both rural and urban.”
  • “My answer would be sufficient and appropriate care for older adults living with dementia and their families when they have to go to the hospital. They need more Geriatric Psychiatry and supports flagging their dementia, delirium and that they are put on the right medications and right treatment plans - not just caring about where they will be placed. If this support was in place along with support and information/education for the family care partners that would make a huge difference in how long people could stay in the community.”
  • “Respite...would be best if the client could stay in their own home so as not to confuse them any more than necessary....otherwise people like me seldom got a break unless we could get untrained family members to come and stay for a day or two.”
  • “My husband has had dementia (frontal lobe) for approx.. 5 years. His memory is very good & he can help with small chores around the house; emptying the dishwasher, carrying groceries in the house, garbage removal, etc. He has a shower every morning by himself; twice a week a PSW comes in to ensure he uses soap & cleans himself as he gets annoyed when I ask him to use soap. Twice a week a gal through the SMILE program comes to take him out; one day for 2 ½ hr. and one day for 1 ½ hr. I am thankful for that support but it is not nearly enough.”
  • “People need way more than 4 hours of respite a week if they are going to do this for the long haul. That is something that needs to change. If I didn't have any other health care or PSW's I would want one 4 hour visit per week to go to their support group, shop get hair done and then say a weekend or evening visit at the $6.00 an hour rate -even if it was just 2 hours to go to dinner or movie or have a night out.”
  • “I got the 4 hrs in-house and was able to get 3 days adult care, but after 3 years of caregiving 24/7 and only 3 weekends I can remember… I was toast!”
  • “I had a family member say to me, recently upon diagnosis, the first thing they were told was to go check out LTC homes. It seems like they don't have understanding of day programs and what they entail. Some people have never even heard of in-home respite. We tell people they should stay home longer - but we don't really show them how to do it.  I think agencies may need to start putting public service announcements on the radio and in papers.”
  • “In our case, there were three issues: he was "too young" no services available even for diagnosis, he had high anxiety that was not handled properly with meds as the "normal " meds did not work and the Psychiatric Ward where he ended up having little experience with dementia re meds. All of this made for an ongoing crisis lasting more than a year.”
  •  “I see the gaps as: more access to adult day programs, transportation, more respite time...and more creative respite solutions - not everyone needs a bath! More programs that offer practical help like SMILE program etc. and better access to care for younger/early onset folks.”
  • “Also, better coordination with geriatric psychiatry for people who are living at home and some kind of community “mobile BSO” supports for families!”
  • “There was no mobile BSO when everything went down for my husband, I think that would have been a big help…and mobile BSO for families…that would be excellent!”
  • “Counselling and social work for family members …the same one all the way through the process…for issues like grief and loss, family dynamics, coping skills and dealing with long periods of stress.”
  • “Grief is so ever present in this disease…It is all so tiring. I read a quote the other day: “The time I miss you the most is when I am sitting right across from you.” So true.
  • “Navigation!!! Where do we go?”
  • “The biggest gaps in community services in our region would be that I was not aware of who I could turn to initially when my mother started to become less safe driving her car.  I think I happened to ask my family doctor about it.  He mentioned calling the Alzheimer Society. So, that is what I did. And, on meeting with them, I felt more empowered and was able to decide what steps to take.  I do not think there is enough education of the public with regard to how to get in touch with services, thinking of outreach from the SE LHINS. Also, the senior driving program is not very great, when it comes to testing ability of seniors, e.g.  Ministry of Transportation has tests that rarely test for driving and competency in driving.”

Key Findings to Question #2: What do you feel would be the most helpful to allow people to live at home safely for as long as possible? 1. Increased Education about Dementia and Non Pharmacological Approaches to all Health Care Staff who interact with Older Adults; 2. More Affordable and Creative Retirement and Assisted Living Options that Keep Spouses Together; 3. Increased Respite and 4. Better Training, Pay and More Streamlined Shifts PSW Staff.

  • “I hear from PSW’s that many are quitting early on. Some are obviously not equipped for their training to take care of such complex people.”
  • “I think higher wages are needed for PSW’s and DSW’s as the level of care and responsibility is a lot higher than people acknowledge.”
  • “I would love to see the PSW training like an engineering degree from Waterloo. 4 months classes, 4months on the job, 4 months more classes, 4 months on the job...etc until they have a degree of proficiency that makes them capable of giving loving support to all types of seniors in need of help. Then pay them properly and schedule them fairly and they’ll want to do the job.”
  • “Yes they need to be paid for the care I expect from them …they are the front line caregivers in many aspects… I recently read there are a high number of accident claims from PSW's who are running the roads trying to do their jobs and getting burned out with long shifts and emotional issues that caregivers will encounter…better pay, better training and more streamlined shifts closer to their homes and better coordination will make a difference for everyone affected.”
  • Perhaps PSW training specializing in Dementia would be a possibility. My mom is independent in her physical needs, but requires a compassionate, skilled approach in her mental health. Also, more funding is needed to pay PSWs a higher wage and more comprehensive training.”
  • “The first is safe administration of medications at home. This is not a service that the South East LHIN offers; secondly, we still don’t have enough transportation options once people give up their license. The third consideration is a facility that is affordable and offers several levels of care. We have couples who are looking for a long term care home for one partner and Retirement for the other.”
  • “Respite and Education for Staff are my answers to the first 2 questions is that caregivers need respite for their spouse. We caregivers don’t necessarily want to go outside our homes for respite ourselves as that just adds to our stress (where to go, making plans, travel, etc.); we need somewhere safe for our spouse to go & be cared for while we have a rest. I have very little family support, and what we do have is emotional rather than hands on. I recently had my husband go to  a beautiful retirement home here for respite. He was meant to be there for a month (at $125./day) however he was sent home a week early due to ‘non-compliance’. He was argumentative with another full-time resident; he wouldn’t change his wet pull-ups, and was a little aggressive with one of the servers once. All of which could have been handled with staff who are trained to deal with people with dementia.”
  • “Education!! Families need more education at all stages of dementia and the ability and knowledge to adapt the home and caregiver to the challenges as things progress…forewarned is forearmed.”
  • “Retirement Homes do not require dementia trained staff…this is not realistic.”
  • “Families need training – about the disease, how to cope practically with communication and “positive approaches” AND those who support us with respite care, hospital care, adult day, home care NEED more training so they aren’t constantly triggering the person or offering care solutions that make things worse not better.”
  • “Teepa Snow Positive Approach to Care training is an excellent tool. I really enjoyed that.”
  • “Hospitals need more education about delirium and geriatric nurses/management in Emergency Rooms. That is often where unravel and get the wrong treatment.”
  • “There is a real strain on retirement homes. We need more creative assisted living situations – that keep spouses and families together.”
  • ‘My husband is near the top of the list for long-term care but, had I had a month or 3 weeks respite every 3 or 4 months, I would have been able to get a rest, recoup and be able to have him at home for a much longer period of time.”
  • “My husband is not aggressive with me and the main problem is his toileting problems and daily care; i.e. meals, laundry, personal hygiene, medication, medical/dental appointments, etc. coupled with my having to deal with all other aspects of our lives; home maintenance, finances, car maintenance, driving, plus my own medical problems which are worsening because I don’t have time to rest & take care of myself. It is not fair that he has to go into long-term care because I am exhausted. It is not fair to have financial strain on our lives. If the province is allocating $100 Million dollars, perhaps a portion of it could go to providing respite.”
  • “Programs like Adult Day Programs, the Smile Program, and Diner’s Club with CPHC are all really helpful.”
  • “Increased funding through the LHINs for extended daily hours for PSW support. My mother was in crisis while waiting for a bed in long term care. She was given 8 hours of free service a day during this time, but that left 16 hours each day that had to be covered by private care. It was very expensive.”
  • More education for families on what to expect with dementia. How do you respond when your mom is talking about her husband and/or mother as though they were still alive? I wish I had known more then. I would not have corrected her. I would have responded to her differently in order to lessen her anxiety. I have learned this from reading on my own and seeing how much easier it is for her and for me. Education on antisocial behaviours, etc. would be helpful. I know the Alzheimer's Society offers many programs, but more is needed.”

Question #3. What are some innovative services, supports, programs or approaches that you are aware of that should be considered to help people living with dementia and their families?

  • “A gentleman from our Advisory shared an article about some creative living arrangements that are happening around the world and in Canada too…things like “intergenerational condos” where people can move in with their parents in a supportive living situation.”
  • “Memory and Motion is a great program (keeping people active and social so they can stay home and be healthy and independent longer) as well as the Positive Approach to Care education for family care givers.”
  • “Falls Prevention programs in and around the house – including exercise programs are very helpful.”
  • “There is a program in Europe somewhere that has students living in the same building as folks with dementia with free rent for the students trade for spending time and doing chores for them?  Why can't we have that while folks are still at home, have a student live in for trade or student rent subsidies?”
  • “If you could get funding to hire your own live-in student or whatever respite solution worked for you…even if it was a family member or friend that would be helpful. We need to get creative and flexible and we need to find a way to keep spouses together as long as they possibly can be.”
  • “Community Care volunteer drivers, Meals on Wheels, Friendly Phone Calls to check in on people…all these things really help people stay home longer.”
  • “There are many innovative programs offered by the Alzheimer Society. I also appreciate the Diner’s Club for seniors and having a hot meal at mid-day. I also think Day Programs is very helpful with caregiver support and to people living with dementia.”

Prepared by: Sharon Osvald, Lived Experience Facilitator

Providence Care Seniors Mental Health/South East Behavioural Support Services & Behavioural Supports Ontario Provincial Coordinating Office in partnership with: The Alzheimer Societies of SE Ontario & brainXchange


Home office: 613-475-9943

Exchanging Knowledge, Partnering for Change



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February- March 2018 Lived Experience Resource Exchange Summaries

February – March 2018 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for February – March 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 39 people from across all of South Eastern Ontario. 36 people were spouses, adult children, family or friends and 3 people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in February – March 2018 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.

February –March 2018 Resource Exchange – SE Ontario Lived Experience Network 

February – March 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • “Our doctor has been wonderful. We were fortunate because we stumbled into the right answers every step of the way. I know it’s not like that for most people.”
  • “It was our oncologist that picked up on the cognitive issues my husband was having. He was very helpful and got us connected with the right supports and information.”
  • “The Adult Day Program has been so very helpful. That and the Alzheimer Society are what have kept us a float.”
  • “We experienced amazing care and concern. When the Geriatric Psychiatrist had to take away my husband’s license, she did it in such a loving and compassionate way. She even gave him a huge hug.”
  • “I love that we can get respite on weekends the same place as our Adult Day program. It is familiar and safe for him and he responds so well.”
  • “I feel comfortable that I know what do to and who to contact when things change for us and we need more help. I have numbers and contacts.”
  • “The early stages support group and the coordinators have been so helpful. I have learned so much.”
  • Participants mentioned they found different programs and services re: wandering helpful – like Project Life Saver (something that covers all of Hastings County).
  • Some participants are taking part in drug studies with Providence Care and have found that to be a very positive experience.
  • “The peer to peer support and information I have learned from the Alzheimer Society support groups has been amazing. It is the key to me being able to handle this.”
  • “I have nothing but good things to say about my Dad’s Long Term Care home. They are kind and treat him with dignity. I think the staff are amazing.”
  • “Thank God for this support group. Everyone helps and shares. It is a total life saver.”
  • “I get the same PSW every time and she is a total angel. She was a great help to my wife when she was alive and just makes my life better.”


  • “One big barrier to getting help and a diagnosis for my husband is I know they might take away his license. He only drives with me and is a very good driver but we hear from friends that they will take it away as soon as they find out he has dementia. I know the day will come, but it is going to be terrible for him to lose that independence- so much so we are waiting to talk to the doctor about it.”
  • “There needs to be more supports for older people that are not internet based. My dad needs a navigational tool that he can use that isn’t just a website.”
  • “I don’t think it is right that Memory Clinics are linked to Family Health teams. We can’t get a doctor in that family health team and therefore we can’t benefit from that service – it should be open to everyone in the community.”
  • “I hate it when they meet my Dad and say to me, “Well, come back in a year.” I feel so lost and alone in all of this. I need to believe that someone is looking after us and that I’m not just doing this all by myself. When we lived in Toronto they saw us every 3-4 months.”
  • *Participants mentioned issues around not being involved enough in conversations about their parent or spouse with doctors, specialist and geriatric psychiatry due to privacy. Others mentioned the feeling that they were not “heard” or shown empathy and concern through various people who were planning and providing their care. “It makes a difference if they care or not…all the difference in the world!”
  • “I believe Long Term Care and Retirement care is going to have to change. We are going to have to get creative and come up with some affordable and workable solutions like group homes and staffed assisted/independent living housing.”
  • “I find when they are offering me respite help in the home that whether or not Mom has fallen is the big ticket to getting help. They have told me “You’re mom hasn’t fallen lately so we are cutting back her hours.” But maybe she hasn’t fallen because she has had sufficient support. We need to start seeing the cognitive issues as important as the physical ones for getting care. Mom is prone to delirium and UTI’s the results of that leaves us completely wiped out.”
  • “There is a huge gap when it comes to hospitals and caregivers. They don’t have room for people and they are pushing them out long before they are well. I faced relentless pressure to bring Dad home and the information you got from day to day was often different. I’d cared for Dad for years at home – I knew I couldn’t manage him.”
  • Participants shared examples where their primary care physician did not act when family members brought their concerns and observations and refused to refer to other services or make recommendations.
  • “I’m always afraid they are going to cut back the hours of support we get at home. I am just managing now, if I lose any help I don’t know what I am going to do.”
  • “We need more resources like the SMILE program.”
  • “I think we need to have local agencies scheduling PSW staff The way it is run now is a mess. Staff are coming from all over the place. There’s no consistency for the staff.”
  • “Co-ed rooms in hospitals!! That is not ok. I had to stay in a room with men.”

February, 2018 Live Chat Summary – SE Ontario Lived Experience Network 

February 6, 2018 SE Ontario Live Chat Topic:

Background: The South East Local Health Integration Network in interested in improving the coordination of care and communication for patients who go to a primary care physician and also use Home & Community Care services (formerly called Community Care Access Centres – CCAC)

  1. Question: We would like to hear about your experience with moving between primary care (your Doctor and/or Nurse Practitioner) and Home and Community Care. What parts of your care delivery have gone well, and what parts do you believe could be improved to make your experience better?  


What parts of your care delivery have gone well?

Seamless Processes, Consistent Care Providers, Clear Lines of Communication and Collaboration between Health Care service providers and Case Managers:

  • “Our neurologist told us about the Alzheimer Society which is how we found out about CCAC, so that was somewhat helpful.”
  • “My experience with CCAC (now HCH) was seamless because I had the advantage of knowing the care coordinator and was familiar with the process.”
  • “My experience was eight years ago, but I cannot say enough good things about CCAC. I suppose because they had already been in my mother’s apartment caring for my brother, the whole process was pretty seamless. I am not sure if the family doctor had much involvement since his first arrangement was for my brother. When my brother passed CCAC just seemed to continue to care for Mom. I am pretty sure they were the ones that got her involved in the day care program at the Alzheimer Society.”
  • “The Alzheimer Society staff were the ones to shepherd us through the process.”
  • “I think the Memory Clinic approach is a really good one – with all the different parties: families, doctors, nurses, social workers and the Alzheimer Society staff present for discussion and developing care plans. From what I have seen that is working really well and ties back to the person’s family health team.”

What parts do you believe could be improved to make your experience better?  

Gaps in Communication, Lack of Navigational and Emotional Support, Not Engaging with Person and Family Early Enough in the Process and Duplication, Issues around Privacy and Consent:

  •  “Unfortunately, our first doctor was not particularly helpful. He didn’t take our concerns seriously or refer us to any supports or services.”
  • “For me, I feel like I am the communicator. For instance the Care Coordinator advised me that they had not received the medical form from the NP. I called the NP and she did not receive it from HCC. I had to call HCC back to ask them to please send the form to the NP so it could be completed. This communication gap has caused a delay of about 1 month for getting on a waiting list for LTCH.”
  • “Knowing where to go for help was an issue. Our family doctor did not tell us about the Alzheimer Society or about CCAC (now HCC). Answers and support were very erratic and superficial.”
  • “I contact HCC a few months back and they said that if I didn’t need help at the time there wasn’t much use in even registering with them. I thought it would have been beneficial to at least get on their “radar”. It felt like if you are not in dire straits don’t waste their time. Fortunately, I am part of a caregivers support group and have gotten tons of good information from them about how to navigate the system- but it’s too bad that it didn’t come from HCC directly. If we only operate in crisis mode that doesn’t lead to a very smooth transition.”
  • “There is definitely a gap between the primary care and the care coordinator. I hope the integration of CCAC-LHIN with primary care by an embedded care coordinator on site will make for a closer partnership in care (Patients First).”
  • “My friend’s mom is going through this right now. She is just getting to the stage where she is going to need some help to keep caring for her husband at home. She phoned HCC but didn’t have the words to explain what she wanted. No one at her family health team or HCC has given her any information about Adult Day, in-home respite or talked with her about next steps.”
  • “I found out this week from one of the Long Term Care Homes we’ve applied to that they still have not received the application. So it is still delayed.”
  • “I also hope the care coordinators become embedded with family doctors and/or Nurse Practitioners. That would cut out the need for caregivers to be calling and ensuring appropriate forms are completed.”
  • “Caregivers who are exhausted and unsure of what resources are available should not be expected to navigate the system of care.”
  • “Another experience I had was it was three phone calls with three different people for a phone assessment that eventually led to a home visit. Each of those people had a role to play. All of which could have been completed in one phone call and then a home visit. The process has certainly changed and is a mechanistic approach to care.”
  • “In my experience family doctors are very uncomfortable about dementia…maybe because they can’t fix it?”
  • “I have a great family doctor who is very supportive but I don’t honestly think she knows how to navigate HCC and access increasing levels of support as the disease progresses – and she’s one of the good ones!”
  • “We need knowledgeable care teams. I was educating the teams as I was advocating for support…and I think about the poor family physicians and NPs…they have to know everything from babies to older adults and all of the diagnoses in between. I can’t imagine the pressure on them.”
  • “One of the barriers to clear communication when supporting a person living with dementia is access to information. Who needs to know what? When and how much personal information can you divulge? I am sure there are some legal limitations…Let’s say that my doctor diagnosed me with Alzheimer’s and I really don’t want my friends or family to know. I can see that happening. Should the doctor share that with HCC without my consent? I think this may be a stumbling block for doctors. They can’t really flag a patient in a system without their consents. In the early stages they can’t over step this (like later on when there is risk of them harming themselves or others) and yet that’s when you want them identified – early intervention is so KEY.”
  • “I know doctors can’t divulge information to you (a family member or friend) about their patient. There is tight legislation about privacy, but we should be able to give important information (like noticing changes in our family member’s driving or day to day abilities) and know that information is welcomed even if we don’t ask for information in return.”
  • “I think a realization that when a diagnosis is made, someone other than the person being diagnosed has to be contacted to also sit in on Doctor and HCC meetings. How would I really know what my Mom was told or not told. I am sure there are things she did not share with us. Family communication is key in making decisions and we really were not kept up to speed on anything that was happening or what choices we had other than long term care.”
  • “Cognitive Assessments are not enough. My mother fooled her GP for years…another reason why home visits are so helpful in assessments.”…”My Dad passed the questions for a long time when he clearly had dementia. Somehow he could pull it together for that.”…”My mom passed the questions in the height of a delirium.”… “Some are relying on screening to make a diagnoses missing the mark of a comprehensive assessment.”
  • “My husband was diagnosed with “Young Onset Dementia” at the age of 61. My experience with HCC and our family physician were very good. The main challenge I faced was trying to access Seniors Mental Health.”
  • “Things have changed since CCAC/HCC amalgamated. It didn’t use to take three phone calls with three different people just to get a phone assessment that led to a home visit.”
  • “Consistency is an issue. Our family had three different case managers from just moving across town.”


  • My experience with CCAC was pretty positive but I keep thinking we need “navigators” – “nurse navigators” - should that role be integrated into the LHIN/HCC as part of the care coordinators role to an enhanced level from what it is? If we can’t fund nurse navigators, it could be funded in a dual role coordinator/ navigator - in other words, instead of assignments being related to geography or particular family doctors, have coordinator specialists in dementia who are well educated on the appropriate care paths.”
  • “Generally, your first point of contact about dementia is your doctor. If they are linked with HCC communication should be clearer and there would be less duplication in filling out forms. It might also prompt family physicians to be more mindful about providing supports and being collaborative.”
  • “It might be helpful if HHC maintained a data base of people with a diagnosis of Alzheimer’s and where they are on the spectrum. It seems that by ignoring those recently diagnosed or early on in the disease, they are missing opportunities to be proactive in the delivery of care. Wouldn’t it be nice if they called me every three months to see how it’s going and if there have been any changes?”
  • “I can recall a time when CCAC had case manager who were specialized in dementia care – that changed when they were assigned to regions….It might be easier if the Care Coordinators went back to specialties rather than geographies…for navigation that it.”
  • “First Link was to be the gateway between the Family Physician and the Alzheimer Society support…I understand that is being rolled out through the Dementia Strategy.”
  • “A doctor shouldn’t have to know how to navigate a service, but the service should be the Rx for the patient on diagnoses…they either need the knowledge or someone linked with their office to help pass along those referrals and/or navigational tips and support.”
  • “Even doctors need a support system…so much is needed and education of health care providers is critical, but they need a support person/system for consultation even considering the constant changes in programs and services.”
  • “I have received many letters in the mail for screening of Breast Cancer and Colorectal Cancer. Perhaps a screening like any other when you reach a certain age is a good idea, apiece of the puzzle and becomes routine.”
  • “You could flag MoCA on the screening that includes Mammogram, FOBT, Immunization etc. to trigger the need for assessment or re-assessment.”
  • “Automatic screening at a certain age and if flagged then the doctor has the right to call HCC is an idea…however, what is the difference between screening for cancer and for AD? – Is it stigma…or perhaps that there is potentially a cure for cancer?”
  • “If the MoHLTC could get universal health records in place that would be an asset to all…especially caregivers.”


February 2018 Province Wide Live Chat Summary:

Behavioural Supports Ontario Provincial Lived Experience Network Advisory


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.


Our February 21, 2018 Provincial Live (typed) Chat event on included twelve lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury) as well as the input of participants from Trenton, Thessalon, Brockvile, Chatham, Toronto, Brighton, Cloyne, Smiths Falls, Brighton and Mississauga, Ontario. Dr. David Ryan (Director of Education & Knowledge Processes, Regional Geriatric Program of Toronto, Assistant Professor, Faculty of Medicine, University of Toronto and Consulting Psychologist, Sunnybrook Health Sciences Center.) was our special guest and brought us the following topic question:


The Regional Geriatric Program in Toronto have developed a Senior Friendly Care Framework identifying the “Senior Friendly 7”  -seven areas suggested by research for which intervention would be most beneficial to older adults who are frail or at risk of becoming frail.

These seven areas are: 1. Cognition/Delirium, 2. Mobility, 3. Nutrition, 4.Polypharmacy, 5.Pain, 6.Continence and 7.Social Engagement.

 “When reflecting on your own lived experiences in dementia care as a patient or family care partner:

  1. In what ways would a review of the Senior Friendly 7 topics (SF7) be helpful where and whenever the health care systems connect with older adults? How would routine review of the Senior Friendly 7 topics help older adults when they need to connect with health care systems?
  2. How would routine review of the SF7 topics help (or have helped) when you touched base with health care professionals?

Key Findings:

The Need for Family/Care Partner Support and Respite:

  • “I can finally get a full night's sleep these days. It had been exhausting. It has taken a long time to get back to some sort of ‘normal’ energy level.”
  • “As a health care provider and daughter I am keenly aware of caregiver burden. I try to approach my clients and caregivers living with dementia as a unit. I spoke to a group of informal caregivers yesterday associated with a local Family Health Team and Health Links. Primary Care is not meeting the present and anticipated needs of persons living with dementia and their caregivers.”
  • “I truly believe that caregivers are at great risk, not only to themselves, but will put a burden on the healthcare system that will get worse if it is not dealt with.”
  • “My biggest ‘beef’ became lack of sleep. Not much could be done about that, short of affordable, available short term respite, which is almost non-existent.”
  • “It took my mom so long to get ready and out the door to get to Adult Day, that I took myself out of the workforce.”

The Need for a Holistic Approach to Care:

  • “From my vantage point, the seven things are often dealt with individually, but rarely are they dealt with collectively, and that’s the problem. Very few health care teams can deal with all 7 well, but that’s what our seniors and their caregivers need.”
  • “I would have appreciated a review of the SF7 for my family member who presented with weight loss and the prodromal anxiety. The focus was on the weight loss and not the underlying cause or rule outs. I had to advocate for a cognitive screen. I basically gave them a full assessment and only asked they do a cognitive screen, refer on to Seniors Mental Health Outreach, and ask her to stop driving. They advised me they could not act on my concerns because at the time I was not listed as next of kin. It was only after she crashed her vehicle that I was able to get things moving. I agree - things are dealt with in isolation and the person is not seen as a whole.”
  • “I’m going back to the idea that these things are all interwoven. I know we had trouble getting my grandfather to adult day because of his cognition and mobility. He lived in a rural area, never had a driver’s license and never cooked until my grandmother went to Long Term Care. He couldn’t get himself ready in time for the program and he didn’t qualify for help and family all lived at a distance.”
  • “We really need to look at all these issues as one bigger solution.”
  • “The issues with incontinence often start years earlier. Advertising to boomers normalizing use of incontinence products is a huge problem. Pelvic floor strengthening needs to start sooner but primary care is not asking the questions. Urologists are more focused on prostate issues! The remaining 6 domains of SF7 need to be considered with risk mitigation around incontinence: Cognition/Delirium, Mobility, Fluid intake-Nutrition, Polypharmacy including sub use, Pain, and impact on Social Engagement.”
  • “There are limitations on use of some pain meds so we need to broaden that approach to include all and any comfort measures. As for polypharmacy we need our health care providers partnering with pharmacist to do medical reconciliation and de-prescribing as needed.”

The Need for SF7 Education and Delirium Recognition and Management:

  • “From my perspective, delirium was never even on the table as a discussion point. People talked about cognition, but I had no clue what delirium was or what to watch for. That information would have been extremely helpful to us as we touched the different health care systems.”
  • “Education (about these topics) is needed at the college and university level and further capacity building in the field.”
  • “Delirium recognition and management is a huge issue across the sectors of care.”
  • “Delirium awareness and prevention is quite shockingly missing.”
  • “Teaching family caregivers is critical, but even ED staff need education. For example a person may be confused, have as slight fever but let’s do CXray when it might be faster to do urinalysis.”
  • “Family care partners should have this knowledge but they also need to be empowered.”
  • “Education for family care partners is especially important when it comes to things that may be medical emergencies such as delirium.”
  • “If family care partners know what to ask for, we’ll be in a better place to improve our health care results.”
  • “I think it is so important to emphasize ability preservation.”
  • (In regards to education about mobility and the importance of exercise): “The seniors we met with to talk about the SF7 told us not to say exercise or physical activity but “motion is lotion” was Ok.”
  • “Families need to understand there comes a time when certain medications are more of a risk than a benefit. Sometimes caregivers may equate stopping certain medications a giving up on recovery…they also need to know about over the counter things like Gravol, Benadryl, any over the counter meds that dry you up and make you drowsy can be a risk for delirium.”
  • “Educating people about the real reasons they take meds is important. My 85 year old aunt, who has profound hearing loss but nothing wrong with her cognition, was prescribed lorazepam for dizziness! She’s had inner ear issues all of her life, but someone must have thought it was something else. If I hadn’t known and taken it from her, she would have taken it and likely fell and hurt herself.”
  • “In terms of polypharmacy, being included in the SF7, I think it makes sense. We should have more knowledge of common interactions.”

The Need for a Standardized Approach

  • “As a geriatric mental health alumna, I default to the PIECES framework which covers all these SF7 domains…even at care conferences and review of my mother’s care needs in long term care.”
  • “I think reviewing these seven topics has to become a part of the various health care systems universal focus – whether that is the Home and Community Care, Emergency Care of Family Physicians. It needs to be as common of a focus for assessment – just like PIECES. Right now caregivers have to be their own advocates.”
  • “In our family situation, I was able to guide the assessment from our Primary Care provider. Then when she went into delirium where I had to take her to Emergency, again I had to guide the assessment to ensure delirium was considered and it wasn’t assumed that this change was a result of Alzheimer’s disease. We need a standardized approach in primary and acute care.”
  • “I would be interested to see how the SF7 could be adapted into Community Health Centres and Family Health Team models of care. From the rural perspective Community Health Centress have a more comprehensive wrap-around approach to care. Are there tools that can be accessed?”
  • “With First Link program and education a number of years ago, I found that people found the PIECES acronym helpful. (Physical, Intellectual, Emotional, Capabilities, Environment, Social)…this encompasses the SF7. A tool for caregivers would also be so helpful.”
  • “When it comes to pain, with the PIECES assessment, we always have to be watching for their reactions and try to discover the causes.”

SF7 Barriers

  • “At home, addressing delirium was a challenge due to poor mobility – getting the urine sample order, getting the sample itself, getting the sample to the lab etc.”
  • “The LHIN has recently boosted funding to our Adult Day programs and offered free transportation until the end of March for clients who need it – many clients tell us they have a hard time arranging for families that work.”
  • “Transportation to Adult Day Programs is challenging.”
  • “Community care drivers are wonderful, but not all families can afford it. Access buses are great too but drivers to no assist clients into the building. It is kind of a drop off routine.”
  • “In my work, transportation to our day program is an issue as well. With the increase in clients, we are experiencing more and more people living in poverty. We subsidize using donations.”
  • “Accessing services of any kind is difficult in the North outside the major centres. But, we have a solution coming. Algoma district is in a program to evaluate a Rural Health hub. We have committees that include all aspects of the lives here. We are not tied to the Ministry of Health and Long Term Care. It has been an intense exercise but we are gathering all resources in the district and they are trying to develop agreements that will provide links. The problem is financial support. We need this without cutting current budgets.”
  • “Care and access has to be universal no matter where you live in the province. You can’t suffer financially or otherwise because of where you live.”
  • “The nearest day program to me is in Sault Ste. Marie which is 90 Km one way.”
  • “Re incontinence: in LTC I still want to take Mom to the washroom when she is able to tell me she has to go, but I have been advised for both our safety I can no longer do that. She has good mobility and bad mobility days, I understand that, but who does someone who is expressing the need to use the bathroom have to go in a diaper?”
  • “Re incontinence: it is really hard for family caregivers to get a urine sample from a person living with dementia. I was hoping the incontinence clinic would offer it as a service, but they do not.”
  • “If I wasn’t my family member’s navigator and advocate there would be huge issues because of polypharmacy. She ended up at Emerg. where the MD handed me a prescription to discontinue 1 medication and added on an antipsychotic. Because of my knowledge, I did not fill the prescription because that would have caused a worse delirium than she was already in. My concern is the caregivers who do not work in the field. My husband would have followed “the doctor’s orders.”

SF7 Successes

  • “Once the diagnosis was made, I found that the Adult Day Program, which mom attended for five years seemed to help delay the progression of the disease and their daily exercise program has kept her mobile.”
  • “Regarding social engagement, The Adult Day Program my mother attended was a great help and she would be already to go two hours ahead of time.”
  • “As for social engagement, in the LTC home where mom lives, the residents are kept very active all weekdays, (weekends are a little less) but weekdays: art, cooking, socials, music, outings…I could go on and on. They even have tables set up where you can sand blocks of wood, fold and match socks or tend to babies in the nursery.”

For information about how you can participate in future Lived Experience Café chats or Lived Experience video/teleconference advisory conversations, visit the Ontario page on  or email Sharon Osvald, BSO Lived Experience Facilitator at . Sharon can also be reached by phone at 613-475-9943.   


March SE Ontario Live Chat Summary:

Tuesday, March 6, 2018 TOPIC:

SE Ontario Topic: Person Centred Care is widely considered to be one of the essential frameworks for caring for a person with Dementia.  Recently, the BSO Provincial Lived Experience Advisory has done some tremendous work identifying Personhood tools that can be used to help provide Person Centred Care. However, we know that there are many barriers within our health care system to providing Person Centred Care, especially for people with Dementia. Tonight’s question comes from Kim Schryburt- Brown, Clinical Resource Project Consultant of Seniors Mental Health, Behavioural Support Services Providence Care

Background:  Person-centred care is a philosophy that recognizes that individuals have unique values, personal history and personality and that each person has an equal right to dignity, respect, and to participate fully in their environment.

Common Themes in Person- and Family-Centred Care include:

 1. Establishing a therapeutic relationship for true partnership, continuity of care, and shared decision

 2. Care is organized around, and respectful of, the person (For a person to be satisfied with health-care services, care must be organized with and around the person. It should be respectful and reflective of the person’s voice, needs, culture, values, beliefs, and changing health states and life circumstances. )

 3. Knowing the whole person (holistic care) A person is not defined by their disease or their illness.)

 4. Communication, collaboration, and engagement.


  1. Have you experienced Person Centred Care, either for yourself or for someone living with Dementia?  (Please consider sharing your experiences, how you know it was Person Centred Care, and if this approach helped or hindered the health care provided?)
  2. If you have not experienced Person Centred Care, is this something that you would be interested in having as part of your health care? Why or why not?

Key Findings:

Providing People with Individualized Person and Family Centered Care is challenging in a group setting. It can be difficult to meet people’s personal preferences and wishes as well as the needs of the group and the organization.

  • “My biggest challenge seems to be ensuring client/family centred care.  I am seeing some positives for which I am thankful, but I find administration/rules and regulations can really interfere with doing the right thing.”
  • “So far to the great extent, it has been institutional centered care. I am beginning to see some progress – but it takes a lot of perseverance and work which is very tiring.”
  • “In my dad’s case person centered care is the only thing that works. He is still very strong willed and it is his way or the highway. His staff has realized this over time – but it should have happened more quickly. (It wasn’t a philosophy of care they followed – more actually what “worked” for everyone.)”
  • “I am advocating for a change I have a variety of concerns including safety – but rules are rules and if you do it for one you have to do it for all. I understand that to a point – but where is the person centered individual care in that?”
  • “Care is often more focused on the health care provider from what I have experienced in the dining room at our LTC. WE all know that it is important to keep things as much the same routine as possible for someone living with dementia. My mom has been moved to different tables. I was told this is to facilitate anyone regarding assistance with eating and it is easier if residents who require assistance are grouped together. Of course since residents change on a regular basis, there is always change happening in the dining room – which has been very hard on my mom. I understand the reason behind it, but the focus is on being efficient, not on people’s friendship and wishes to sit with the people whose company they enjoy.”
  • “Our residence underwent a much needed renovation. New wings were built but in doing so, residents who were friends were split up and sent to different wings and different dining wings. It was really sad to see. They joined together for activities but only after they realized the new activity rooms in the wings were not working. People missed each other. It wasn’t planned with those relationships in mind – this is their home and their neighbours.”
  • “I find although our home is really working on this, it struggles when offering personalized one on one activities for people in more advanced stages – based on their interests and capabilities. Every person needs a sense of purpose.”
  •  “The dining room is consistent for my father, but there is the inconsistency of trying to feed him and letting him feed himself. He was trained to eat slowly and savour his food. Hid is sometimes hurried and even fed by some of the part-time staff who don’t know him and think they can get him to go faster.”
  • “People need meaning in their lives. Since we know them so well, I feel it is often up to us as caregivers to prod for this to happen on their behalf. We have a long way to go in increasing the understanding that most of the time, we are the voice for our loved ones and need to be carefully listened to with regard.”
  • “Not following the care plan is not practicing person and family centred care – particularly around toileting and nap times – this is a pretty regular occurrence.”
  • “I know rules are made to keep people safe and things consistent but it becomes a problem when the rules and regulations are the key focus. When you see issues with a regulation that isn’t working there is nowhere to take that concern. This applies everyone. The staff have to deal with this issue too – carrying out regulations they don’t believe in.”
  • “Another issue is everyone seems to interpret and even manipulate those rules in ways that aren’t in the best interest of the person and their care.”

Changes in Ideology and Practice are beginning to take place leading to positive changes:

  • The positive I see is there is more regard for the individuals in the dining room eg. Designated seats at tables and slightly more offers of meal choices.”
  • “I see the culture changing. I’m hearing more talk about the person’s choice and personal history – such as not getting the residents up for breakfast and trying to follow their schedules where possible.”
  • “I was able to practice involving my Mom today – folding the babies’ laundry. She made neat little piles and kept smelling the clothes the way she did when we were little. It brought back so many memories.”
  •  “I have recently been asked to put my name forward to be a lived experience facilitator where my family member lives.”
  • “Our home has tried to give purpose to my mom – having her fold towels, bake, do “paper work/accounting” work.”
  • “I am pleased to see that every LHIN has a Patient and Family Advisory Committee and that they will be actively involved in planning and evaluating care in our region. This is a good start.”
  • “I heard today that the Residents’ Council at our home has input into the menu and have managed to even get rid of certain meals. I hadn’t realized they were involved in that way but was happy to hear there are.”
  • “Minutes from our residents’ council are posted on a board at our residence and I also get sent the minutes because of being on the family council email list. You can see a real trend to trying to share information. I think that is great.”







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December 2017- January 2018 Resource Exchange Summaries

December 2017 – January 2018 Resource Exchange Summaries


Summaries Resource Exchange:


This Lived Experience Resource Exchange for December 2017 – January 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 36 people from across all of South Eastern Ontario. 30 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 December 2017 – January 2018 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.


December - January Resource Exchange – SE Ontario Lived Experience Network 

December 2017 – January 2018 Face to Face Advisory Conversation Summaries:

Face to Face Advisory Meeting Findings

Supports That Helped:

  • *Several families mentioned they had positive experiences with their involvement with the Memory Clinic at the time of the diagnoses, they liked that it was so collaborative and comprehensive. “We found our experiences with the Memory Clinic to be very positive. The whole meeting was well handled and the communication and information was clear. We felt very supported and were able to include our daughters in the conversation. Everyone was there and all working from the same page.”
  •  “The Memory Clinic helps you navigate your overall health.”
  • “When it comes to information about the disease and where to find supports, I got more information from the Alzheimer Society workshop “In My Shoes” than anywhere else. It was so helpful!”
  • *Several participants expressed positive experiences with their family doctors and nurse practitioners including good and open communication and referrals to psychogeriatric care/ memory clinics for assessments.
  • “Support groups are key for us. We come as a couple and you learn so much and feel supported. We go to everything we can.”
  • “I have found our pharmacist to be very helpful in taking time to look at everything I am taking (over the counter and prescription) to see if there are any issues.”
  • “We have had a great experience since moving to our retirement community. Besides activities and bringing up our evening meal, they offer monthly blood pressure tests and much more, they’ll even start your car for you. It has been wonderful.”
  • “We have felt very supported by our Nurse Practitioners. They are a very good resource and we have found them to take more time when meeting with us and more compassionate than when we are more rushed with our doctor.”
  • *Participants expressed their appreciation for support for activities provided by their social and church groups.


  • *Several families mentioned they did not feel the Health Care Connect program was an effective way to find a doctor. “After moving to this area and having to let go of our doctor, we have found the Health Care Connect is not how people really get a new doctor…it is still word of mouth, an emergency room doctor who takes you on or your friend of a friend.” … “Health Care Connect is simply not working. Asking people to let go of the doctor they have to sign up for the possibility of getting another doctor – maybe – is just not reasonable especially for people who are older and vulnerable.”
  • “One concern I have with the management of our health care system is all complexities and hierarchies in management. It is too complicated and is not cost efficient.”
  • “I believe ageism is a real problem in our society and in our health care system. When my mother was palliative, there was a real sense that she couldn’t die fast enough and that she was taking up that bed! I believe it was because of her age. Just because they are old they still deserve the same care and respect as everyone else…maybe even more.”
  • “Clear and compassionate communication is a problem. My mom called to ask if she and my father should be put on a list for long term care. When the worker determined they weren’t ready to go yet, she didn’t even offer to book an appointment to talk about what their options were –like respite, home care services, adult day or to get a sense of how much help these people might actually need. I think older people have trouble communicating and understanding as it is. The message mom received was “Don’t call us back until you are ready for long term care.” Now I have to un-do that. She called once and failed and now doesn’t want to call again.”
  • *Many people phoned, or spoke to me asking questions around how to talk to their doctors about getting assessed, what is psychogeriatric care and how do you access it and who do you call for home care, adult day or long term care? Navigation continues to be a challenge.


December, 2017 Live Chat Summary – SE Ontario Lived Experience Network 

 December 2017 SE Ontario Live Chat Topic:

Last month, one of our Lived Experience Members and I had the opportunity to participate as part of the BSO (Behavioural Supports Ontario) Provincial Coordinating Office Expert Panel for Non- Stigmatizing Language with a Dementia Focus.

 December’s topic is an extension of these expert panel discussions, which really emphasized the issue of ageism in our society as a whole and how that affects the delivery of health care.  Ageism is prejudice or discrimination on the basis of a person’s age – specifically against the elderly. It is also a tendency to regard older people as debilitated, unworthy of attention and unsuitable for employment.

Based on your lived experiences, come prepared to share:

  1. Some of your observations of ageism in our society?
  2. Any words or saying you feel encourage stigma about dementia or inappropriate beliefs about aging?
  3. Any experiences you have had or observed with ageism and stigma and how it affects the delivery of health care - particularly for someone living with cognitive impairment?

Key Findings:


Observations of Ageism in Society:

  • “This is such a huge topic. Are we seniors? Elders? The Elderly? Etc. and when do we start to fit into that category? And does the younger onset dementia get missed because they aren’t in “these categories?”
  • “I actually think we live in a good place. I have not felt any stigma related to getting older and all our friends are kind and loving to my husband. Our doctors have been fantastic.”
  • “What other age group gets group together that encompasses over thirty years difference (65 -99 years old) and calls it one homogeneous group?”
  • “A few of my “mid-seventies” friends have asked me, “Did you ever notice how once you turn sixty five and retire you become invisible when it comes to customer service and people paying attention to you?”
  • “I’ve experienced people addressing the younger person I am with instead of me.”
  • “It seems to me that other cultures have maintained their respect for the elders but we are moving so fast that we don’t see value in patience and thoughtfulness.”
  • “We really could learn some valuable lessons from some other cultures.”
  • “I am wondering if it has something to do with basic respect for another human being….retired or not.”
  • “I think there is actually quite a bit of respect for the older generation. When I was working I coloured my hair. When I retired I was surprised to see how grey my hair was, but then I noticed cashiers etc. calling me dear and being helpful. We who are aging should be grateful for any kindness shown.”
  • “We are often walking the tight rope of keeping them safe and preserving their independence and respect.”
  • “Last week I stopped an individual at the long term care from going outside with just his t-shirt. He did not have dementia. I felt bad all week because although I was trying to be helpful, I did not respect his individual right to make his own decision. He is free to go in and out and do as he pleases.”
  • “I also struggle trying to find the right balance between doing too little or too much for my wife. I’ve decided if it is a safety issue or causes her anxiety; it is time for me to help out.”


Words and Sayings that Encourage Stigma and Inappropriate Beliefs about Aging:

  • “Excuse me; I’m having a senior’s moment.”
  • “It must be my old-timers kicking in.”
  • “How about speaking loudly because you are older?”
  • “How about when you are very active, fit good looking etc. people say you are that…for your age.”
  • “The silver tsunami which implies age is a disaster waiting to hit.”
  • “They are demented.” Demented is an awful word that needs to be banished!”
  • “The word demented is similar to the word retarded…it is hands down the most offensive word. We should just say this person is living with dementia.”
  • “I also notice terms like “suffering with dementia” are not the greatest – yes we all agree this is a terrible disease, but we also want to emphasize that people living with a dementia can still live their life well, with joy, purpose and meaning.”
  • “Any words that are blaming or labelling should be avoided.”
  • “Another example of stigmatizing language would be saying, “I am going to toilet your mother” or referring to residents who need more assistance as “the feeders.”


Experiences with Ageism and Stigma and how it affects the Delivery of Care:

  • “From my experience with my Mom and some of her appointments, professional people should be attuned to the needs of the elderly. However, that is not what I have witnessed and have often felt disappointed. In general people need to be more patient and look directly towards the senior person to have that eye contact, expression etc. Otherwise the information is lost because they didn’t “hear” them.”
  • “My own mother was told by her family physician a few years ago that she had a hiatus hernia but that because of her age she likely wouldn’t qualify for surgery and she had just turned 70! She suffered with symptoms and finally seven years late another doctor referred her to a surgeon who could not believe she suffered as long as she did.”
  • “It is overwhelming that all questions are addressed to me when my husband is right there…these questions should be asked in a general way to include us both when my husband is right there.”
  • “Over the years (working with seniors and families) clients and families have taught me a great deal about allowing for some risk. I just want to jump in and fix the situation; mitigate the risk; and live happily ever after. But is that what my family member wants and it is acceptable (for clients as well)? There is no magic rule, but we need to step in and help when there are safety risks or anxiety…but not step in too much.”
  • “If we see people as “people” and not “old people”, we will do our best to keep them independent and vibrant as long as we can.”
  • “Language is a priority for our Community Seniors Mental Health teams. We are trying to banish the words aggressive, violent, abusive etc. and speak more in terms of responsive behaviours. Our clients, residents and patients are only acting on what their brain is telling them to be the true and they are responding to the stimulus whether it is a person who is assisting with their morning care or a co-resident who walks into their personal space. The responsive behaviour is not intentional, rather it is self-protective.”
  • “I am not sure where this belongs, but professionally we call it “Diagnostic Overshadowing” meaning that because the person has a diagnosis of AD or another dementia, sometimes it is that diagnoses that gets attributed to the reason for a change in behaviour when in fact it could be an underlying medical condition. We often hear, “It’s their Alzheimer Disease.” (Several chat participants had experienced this – symptoms were disregarded especially when experiencing a delirium or pain.)
  • “I think one of the ways ageism affects the delivery of care for older adults is how short the education programs are for PSW’s staff supporting seniors compared to similar professions like SSW, ECE and CYW who train for at least two years. This is an extremely complex population with multiple health issues and social needs taking place at the same time and yet the training required to support them is shorter than any other profession like it. That to me implies we see older adults have less important.”


December Province Wide Live Chat Summary:

Behavioural Supports Ontario Provincial Lived Experience Network Advisory



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.

Originally, we had another topic chosen for the December 20, 2017 live (typed) chat discussion question, but due to the various commitments and activities surrounding the holidays only five people were able to participate in the live chat. Instead of our planned theme, we held an “open” topic chat. The following communities were represented: Sudbury, Brighton, Chatham and Trenton. Emails were received from two participants sharing their input from Kingston and Cloyne.

As a result of the discussions, key themes emerged:

“Emotional Fatigue” associated with the grief, guilt, sadness and loss that come to the surface as a result of the holiday season.

  • One of our family care partners and Advisory members emailed that they would not be attending the chat and stated they were feeling “Emotionally Fatigued” as the Christmas holidays were approaching. Many of our participants expressed feeling the same way.
  • “Holidays can be a challenging time as there are so many memories and triggers associated with Christmas. This can also initiate certain behaviours.”
  • “I find holidays trigger my guilt and grief. It is one thing for me to enter into Mom’s world on a day to day basis, but holidays like Christmas, birthdays etc. remind me of the past and of the loss.”
  • “I am seeing in the eyes of the families I support the tiredness and also the grief and guilt. I try to reassure them but I still see them almost in tears wondering if this is their last Christmas at home and the guilt of having to make that decision to go to Long Term Care.”
  • “I can completely understand emotional fatigue! I have worked in this field for almost 20 years, but there is nothing like lived experience. The emotional drain is unbelievable.”
  • “We are supporting family at a time that is more difficult for them and we have our own emotions to work with and get through. Sometimes it can get to be too much.”


The need to adjust expectations, schedules during the holidays and the importance of simplicity.

  • “I am still learning to adjust my expectations. In fact expecting nothing at all works well too.”
  • “The person living with dementia picks up on everyone else’s moods, anxieties and worries. They also see a lot of coming and going. It can get to be a bit too much for them. It is difficult to remember to leave our agenda behind and meet them where they are today.”
  • “There is a lot of social pressure to have a picture perfect holiday. You see other families on social media having their picture perfect holiday or on the TV etc. (of course we know what we see is only partial truth) but it does add to our disappointment and sense of sadness.”
  • “I was recently reading an article about managing the expectations of those who haven’t seen their loved one in quite some time and the importance of advising them on what to expect before they see them – especially if there have been significant changes.”
  • “The challenge with Christmas and other joyous occasions is the distraction of lots going on and lots of coming and going. It is hard on the person living with dementia because they do not feel included. Unless there is someone who knows the person and understands the disease sitting with them ensuring inclusion – that is a tough job!”
  • “Family members can take “shifts” support the person living with dementia. It often gets noisy with everyone talking over their heads.”
  • “There is the pressure of not knowing what they might do, or how they might respond. The first year we hosted Christmas my mother wanted to go back to the LTC (home) in the middle of the meal. It was juggling the pressure of hostess, mother and daughter/care partner all at once. It made for a stressful dinner for sure.”
  • “Keeping it simple is something people need to learn and give themselves permission to do even if it means altering beloved traditions…Pizza and Sushi are totally acceptable Christmas traditions to start. Who says you have to have turkey or ham?”
  • “There is so much pressure to have the ham, turkey, potatoes, stuffing, etc. I think it needs to be “ok” to have an easy meal, potluck or catered food.”
  • “Providing a quiet environment at any family gathering is a challenge…it might mean we break up the tradition.”


The importance of communicating your needs (and how the needs of the person living with dementia have changed) with family and friends who provide you support.

  • “Great communication with key family members to ensure there is someone for backup is important in the event that something goes sideways while we are indisposed.”
  • Participants mentioned feelings of resentment (mixed with guilt for feeling resentful) and expressed the wish that they had more help from family members…. “It is what it is, but sometimes I do wish a sibling would give me permission to not be the responsible one by making their Christmas routine include our mother.”
  • “We need to make ourselves ask for help too. Sometimes we assume our family members can see how stressed and burdened down we are feeling – but often unless we tell them and tell the HOW to help, they don’t know what to do and assume we’ve got it all under control.”


January SE Ontario Live Chat Summary:

Tuesday, January 9, 2018 TOPIC:

SE Ontario Topic: Our January 9th SE Ontario Live Chat will be an open theme. Come prepared to share some the challenges you have been facing in your role as a care partner and also some of the ways you feel supported and even grateful.

Key Findings:

1. Early Onset Dementia – This was the experience of several of our participants:

  • “My husband was diagnosed at 61. It had been a long and winding road!”
  • “My husband was early onset also. The rocky beginning made for the added burden.”
  • “Early onset must be very life altering.”
  • “Fortunately I had no retirement plans per se and definitely no time to develop any. It is most sad for my dear husband.”
  • “My husband has been in LTC for six months now, and it is more difficult than I ever could have imagined! He was diagnosed with FTD 10 years ago at age 63.”


2. The Effects of the Lack of Time Spent “outside” (and off site) once a person living with dementia enters a hospital or Long Term Care:

  • “The other day as I was walking down the corridor, looking out towards the Lake, with the snow coming down, I suggested we escape and a big rare smile spread across my husband’s face! So now I know, he does feel imprisoned.”
  • “I feel bad about how little my mom gets outside too ...winter makes it impossible for her to ever leave. I think about that a lot.”
  • “I am an outdoor person and I have told my children for the future that they are to hire me a person to take me outside at least once a day, winter- spring- summer- fall. Even if I just sit in the car.”
  • “It is important for people to get outside, even if it is just to sit in the car.”
  • “I asked my Dad if he knew what my new car was called and he replied, “Getaway car.”
  • “The outings are so important to people in care. It is nice when homes have wheelchair buses or are able to rent them for country drives. We go to the beach in the summer two times and take Kentucky fried chicken for everyone. In the retirement home we used to go to the sugar bush and on a wheel chair hayride. That was the best ever


3. Holiday/Caregiver Stress and Solutions:

  • “Families I work with do tell me often that holidays are stressful. There is the pressure to make things the same as the past and really it is just not the same right.”
  • “We kept it really simple and just brought mom home for a quiet afternoon in front of the fireplace and Christmas tree. Then a small group of our family had a tea party for her on Christmas day.”
  • “Our family has learned to keep things simpler, adjust our expectations and make visits shorter and with less people."


4. The Benefits of the Social Stimuli and Examples of Activation Provided in Long Term Care and Adult Day:

  • “For my mother there were years of struggle through depression, selling our family home, loss of driving privileges and accepting care but she has thrived in LTC even rebound 80% after stroke in July.”
  • “It is good for us to remember that Long Term Care often provides an element of care and stimulation – that we cannot duplicate at home. It is needed and helpful.”
  • “In Mom’s case, she struggled in her apartment and it wasn’t until after the move and adjustment that we saw how she thrived around others –with the stimulation from the ladies at her table in the dining room to the music and activities.”
  • “In activation we also have faced the challenge of male focused activities. In our day program recently we have a volunteer that brings the wood shop in. It is fabulous and the ladies enjoyed it too. We were sawing and drilling. I think LTC homes in this country need to have more workshops in their buildings.”
  • “A workshop or interactive kitchen would be ideal, but my wish is a simple one –a clothes line!! My mom and I always enjoyed hanging clothes on the line – something about it is comforting. I always thought this would be a good outdoor activity.”
  • “There’s a neat idea called the men’s shed, full of tools and things for men who don’t have access to a workshop anymore. My dream was to make a version of this in LTC. There is a retirement home in our area that has a good start on one.”
  • “One place I know is working on getting a car to place in their outside courtyard for people to putter on. I love this idea.”
  • “I had a resident who enjoyed pet therapy ask if they could bring a cow, horse or pig by in the summer. He was a retired farmer. I have heard of petting zoos in LTC.”
  • “We’ve had residents travel to a horse farm but not one come to us.”
  • “Petting zoos would be great for our family fun day. Last year we had antique cars.”
  • “My co-worker in adult day and her activation staff hatched chicks last year and named them all. One of our staff brought in ducklings last year and everyone got to hold one. It was awesome.”
  • “We have a volunteer who comes into our home and plays the harp for people in their rooms. I love that!”
  • “Budgies are a hit at many homes – they are easy to care for and some even talk. Our budgie lives in a huge bird condo in the activity room and everyone talks to him.”

5. Guilt

  • “It is very difficult to avoid feeling guilty even when you know the reality is we are doing the best that we can.”
  • “It is interesting that you bring up the constant guilt. One of my aunts passed away just after Christmas and my uncle has dementia. My cousins struggled with the decision of whether or not to bring him to her funeral. In the end they didn’t, but felt so guilty. When I reassured them that they made the right decision, my cousin let out a huge sigh of relief. They didn’t have anyone to talk to about this, which made the whole situation that much worse for them.”
  • “I guess we need a whole chat about guilt! We all do the best we can and it is really about this ugly disease process that we have not control over. We certainly had profound sadness and wish it was different, but we can’t burden ourselves with guilt.”


6.The Benefits and Interest in promoting Inter-generational Interaction and Volunteers

  • “I am on the Family Council and we have a plan for an inter-generational program with Grade 4-5 students buddying up with residents one afternoon once a month.”
  • “If you want to do this, just get in touch with a local school, especially if you know any teachers or principals.”
  • “We’ve talked about the importance of having more intergenerational interactions for seniors in Long Term Care/ Retirement Homes quite a few times in this group.”
  • “Someone needs to make a connection with a school board or even start with a teacher if you know one. The challenge is the cost for bus. The children’s parents need to sign a waiver…You could also avoid bus costs if the kids can walk, but this only works if a school is nearby.”
  • “We have a Grade 8 teacher send kids over to play cards/checkers once a week with a volunteer.”
  • “I worked in the Retirement Home that had volunteer supervising kids who would come and read to the seniors….plus youth need volunteer hours to graduate from high school so it is a win-win.”


7. The Need for Education in Non-Pharmacological Approaches and Increased Staffing:

  • “I work in a LTC home and I am very interested to see that my non-pharmacological approaches work. I think there needs to be more funding to have caregivers trained in these approaches- rather than just giving chemicals.”
  • “The MOHLTC needs to increase funding for activation and recreation – when you no longer are working it is what may fill your day – this would address non pharmacological approaches to needs.”
  • “Consistency is so important (in home care and LTC) you don’t take your children to different care providers, so why would residents have to deal with having so many different care providers.”
  • “The increase of funding in activation would definitely help reduce responsive behaviours.”
  • “More day programs and overnight respite is needed too. You would not believe the amount of time that people are just doing nothing. I would lose my marbles as I love being busy.”
  • “There are many great educational opportunities for health care providers like GPA, Montessori Dementiability and PIECES, but lately I’ve been able to take Teepa Snow’s Positive Approach to Care training – and it is a wonderful hands-on skills training that can also be provided to family care partners (not just professional caregivers.)”
  • “I love Teepa Snow’s PAC training. I wish I had it years ago – especially using the Hand under Hand approach. This is especially helpful when helping feed someone their meal. It is not nice to have someone jamming a fork into someone’s face…I am so happy this training is available for families.”
  • “There seems to be a push to get people off the medications they are on, which is great, but if we don’t educate staff and families to provide the right kind of activities and how to approach them in a way that will bring positive outcomes it won’t really matter will it?”
  • “Like Teepa Snow says, substitution, not subtraction.”








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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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August/September Lived Experience Resource Exchange Advisory Conversations

August - September 2017 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for August and September 2017 is a summary of face to face conversations and one SE Ontario live (typed) chat conversation. These conversations involved input from seventy-three people from across all of South Eastern Ontario. Sixty two people were spouses, adult children, family or friends and eleven people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in August and September 2017 happened 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 and September Resource Exchange – SE Ontario Lived Experience Network 

August- September 2017 Face to Face Advisory Conversation Summaries:

Supports That Helped:

  • Family Care Partner found the SMILE program a great support; they also receive 8 meals a month that really help. Adult Day was very helpful at one point; however they came to the place where they could not manage his responsive behaviours. “I did not feel some of the staff and volunteers had the education they needed to deal with his dementia i.e. how to redirect him and communicate with him.”
  • One participant shared of a successful situation where her spouse experienced responsive behaviours that led him to be charged by the police. (This was an extremely stressful situation for this family). He spent some time in the BSTU and was able to return to a different Long Term Care Home. His meds and approach was altered and things have improved as a result.
  • There were several examples where people felt they had received the care and response they needed in order to keep their spouse/parent in the home. Many reported they had been given enough help and that it was timely.
  • Participants talked about the importance of staying active and busy, both as caregivers and especially as widows or widowers. They spoke of the importance of the Alzheimer Society memory cafes and support groups as well as Seniors Club programs and church activities to keep them mentally and physically enriched.
  • Participants emphasized the importance of a supportive, educated and collaborative family doctor when it comes to good outcomes, referrals and ongoing success in living with dementia.
  • Participants spoke about the value of music programs, both live music and IPOD programs. Music improved their mood, their thinking and brought joy to their lives. They felt this was definitely an area that should be supported with funding.
  • Care partners reported being very happy and supported by the psychogeriatric psychiatrist and the team. “They have been wonderful and made all the difference in this being more manageable.”
  • One Spouse talked about how helpful she found the education and support she received from the Alzheimer Society – especially The Changing Melody Workshop. The peer support from her Alzheimer Society support group and church supports are what helped her through her journey.
  • Spouse reported that despite a career as a palliative care manager and bereavement counsellor when it came to having to face her husband’s dementia, she felt completely side swiped and unable to cope. The help of her family members were essential. She also found good support in the Adult Day and Night Programs in her area. “This has been my life line.” Her husband attends Adult Day three times a week and she has access to affordable and excellent transportation to take him there. “Both the program and the transportation is quite affordable and user friendly.” She also has a PSW come in three times a week to shower her husband. “He refused to have someone care for him until they were able to send a male and most of the time a consistent face he likes. Without this consistency and making room for finding the right fit for him, this just wouldn’t have worked. We are hanging on by a thread sometimes, but these are the things that keep us from falling.”
  • “The three days a week I get of PSW respite is a godsend. Those four hours to leave the house – even if I do nothing – are the best medicine I could ask for. They are what are keeping me going.”
  • “CCAC was very helpful for us, they got things to make our house safer and gave us some support and help.”
  • Person living with dementia in the early stages and his wife reported that the local Alzheimer Society had held an Education Series – four weeks of education that was extremely helpful and on a variety of topics both information about the disease and practical hands on training.
  • “Our family doctor was very knowledgeable, proactive and collaborative. How “informed” your doctor is and how willing he is to reach out for you is the key to getting help early on. We were very lucky. Not everyone we know was this fortunate.”
  • “The saving grace for me was the support groups. If I had not had them, I think I would have gone around the bend because I realized A. I wasn’t the only one and B. There were people that really do care.”
  • “The Adult Day Program is a relief for me as a person living with dementia, I wasn’t keen to start the program when it started –but it is a place where I am comfortable in. We’re all in the same boat and no one is going to have a fit if I can’t remember their name, or say something stupid or babble on. I feel safe there. I find I am going out less to other things because I embarrass myself. NO one judges you there. The girls are wonderful people and there is a variety of stuff to do.”
  • “I didn’t want to go and now look forward to the Adult Day program and I am tired when I get home.”
  • The Blue umbrella program was listed as a positive project that will help make life easier for people living in the community. “If I could live in the community and had just a little more support to take a bus, go shopping or help at the bank, it would make a huge difference in my life and independence.”


  • “I have a background in social services and I was still having trouble finding my way and opening doors. Sometimes you just feel like you are in the mud spinning your wheels and it is so very frustrating.”
  • “There is still a great need for dementia education. We pretty much had to educate our own family doctor. She didn’t even know that an Alzheimer Society existed in this area. I knew about some of the services because I knew people who were going to things, but had I not known that we would have been fumbling around a lot longer with this referral to mental health services.”
  • “There needs to be more work around behavioural supports and training. In our society, when in doubt take a pill.”
  • “It’s not easy for either the person living with it or the care partner. I’ve come to the conclusion that once you start down the dementia road, it is your whole life. It takes over your whole life. It is a totally different disease. I have a liver disease and I can leave that and live my life but you can’t ever leave or not think about the Alzheimer’s. It is 24/7 and all encompassing.”
  • Spouses highlighted navigating the system, knowing who to call and what services as a real issue.
  • “There needs to be some kind of supportive assisted housing that is affordable. I would love to share an apartment with my husband somewhere where there was a little help right down the hall but not completely “long term care”. Retirement homes are beautiful but so outrageously expensive and aren’t geared to people living with dementia. This will be our tipping point.”
  • “At first you just didn’t know where to turn or what to do and now it has all happened so fast that I feel like there are almost too many people involved. It is just mind boggling.”
  • “I didn’t think I had anything wrong with me. I went to the doctor and the biggest mistake I ever did was saying, I think I am getting forgetful. The next thing I know I am at a memory test and this test and that test and we’re all sitting around a big table like this and there were five health care professionals there. A sweet heart of a specialist doctor at one end of the table tells me that I have dementia. It was like…I am a cancer survivor…and it was worse than that. I still feel like it’s written on my forehead and I am very angry…still.”
  • “Even though I have dementia and need support, I am young. I don’t want to eat, sleep and live dementia 24/7. I enjoy community support programs for seniors that are open and economical. They provide strength and balance exercises and other activities and outings that help keep me active but don’t just swallow me up into everything Alzheimer’s.”
  • “One issue for people is if they are smokers, they can’t smoke in programs. This really complicates care for us. It is simple to just say well they shouldn’t be smoking anyways, but it is obviously not that simple.”
  • Spouse highlighted the need for greater dementia education for PSW’s and hospital staff. They also talked about the lack of consistency in PSW staff and schedules for home care. “You can’t just send in new people all the time. There has to be some consistency to build relationships and trust and a schedule.”
  • Spouse shared the importance of affordable and accessible respite – that includes weeknights or weekends.
  • Spouse reported getting good supports for his wife in the home – help with a shower. “We are getting help but we need more help and it seems to have to chase to get the supports that you get.” The person also noted that there was a lack of follow through with some of the things discussed with his family health team and N.P. Plans are made but there is no follow up. This can be discouraging.”
  • Participants expressed that it was difficult to find out information about resources in the area and how you access them. Some members of the group had family members in Adult Day and Evening Programs or were benefitting from memory clinics while others from the same community did not know what helps existed or how to access them.” (Navigating the system.)
  • Family Care partner found the price of Life Line fall alert quiet costly at $60.00 a month. Others recommended another option that costs $29.00 a month. These supports, though helpful, can be difficult to afford.
  • Due to a shortage of long term care, one family care partner has a spouse in retirement home while they await a bed. This is a very stressful situation since the retirement home is not designed or equipped to manage the spouse who refuses personal care from anyone but family. They are driving a fair distance every day to provide support and this is causing great caregiver fatigue. Retirement homes are ending up with more and more people due to lack of respite beds and long waits for LTC.
  • One Spouse shared their need for more support and respite in the evening when sun downing is happening. They are awake most of the night and very tired and burning out.
  • Two families reported that although things had been good up to that point, that recently when they reached out for more home supports they were disappointed to find when they asked for meetings to have their needs “re-assessed”, coordinators conducted these interviews over the phone with the person living with dementia and did not speak with the family caregiver. Families were very concerned and felt their situations were not accurately evaluated. They also said getting physical help – lawn cutting, snow shovelling, house cleaning and other such supports are “the hardest to get.” “I just get so tired and feel like I’m all on my own. It’s more than just bathing I need help with.”
  • Woman living with dementia and her husband found the process of being tested very long, frightening and overwhelming. There were multiple medical professionals providing the testing, they weren’t sure who was responsible for what and what was going on. The participant felt rushed and that there was a lack of empathy and concern shown to her during the process. They referred to it as “a nightmare of an experience” and just re-telling it brought tears to their eyes.
  • Participants shared the frustration of being told different things by the same organization whether it is about whether they qualify for certain supports or not or when receiving hospital care. This communication gap leads to great anxiety for the family members and adds to the difficulty in navigating care. This lack of communication adds to the tipping point for many families who “just can’t trust that help is really on the way.”
  • Many participants expressed their biggest source of anxiety and stress was around the issue of their spouse or parent being sent home from hospital when the caregiver did not feel the person was well enough or that they were in a position to adequately care of them. It has been expressed that the stress and lack of resources experienced by hospital organizations is passed on to the person being hospitalized and their family care partners. Words like “hostility” and “bullying” are regularly used. Participants also do not feel confident or trust that sufficient, ongoing and consistent home care services will be provided to them. “We’re fighting to keep them there and they are fighting to get them out and the word “fight” is not an exaggeration at all. Something has to change for everyone’s sake.”


September SE Ontario Live Chat Summary:

What was the question?

September’s chat question comes from the South East Local Health Integration Network. Jennifer Payton-Hayward, Director of Sub Region Planning & Integration Rural Hastings, asks:

  1. “What supports would family/caregivers feel they required in order to sustain their loved ones to stay in their homes longer?
  2. What was or would the “tipping point” be that meant you can no longer manage caring for them at home?

What were the answers?

 Key Findings:

  1. Sufficient Home Care supports that are: a. flexible and based on the person’s individual needs b. provided consistently with consistent and compatible staff and c. practical help as well as physical supports.
  • “In home support by professional care givers - Assistance in doing transfers to/from bed and personal care.”
  • “Supports needed: - #1 and the MOST IMPORTANT is funding for Homecare services.”
  • “I’m an outreach worker (non for profit) and currently do check ins on a woman that suffers with mental illness. I’ve taken time to build a relationship with her. I don’t have a time limit on my visits. I think this is very beneficial for her and myself. This open time frame allows me to chat with her and report on what her mood was like, her demeanor, body language etc. We need more one to ones that aren’t rushed, but meaningful.”
  • “Logistics need to be improved so there can be stronger teams and to improve on scheduling and travel.”
  • “Inconsistencies with scheduling, PSW tardiness – often due to over booking and lack of travel time – are all large challenges to work on.”
  • “We are lucky from our side that we have it set up that we always have the same trusted PSW to come in. It provides consistency for the PSW and also for the family. If the PSW will be away, I don’t have the send someone to replace her for a day or two. The reason being, I still need to be there to show the new PSW how to handle my Dad and it isn’t really worth my time teaching someone for a day or two.”
  • “My son works as a PSW in the area, he is sometimes scheduled to be at a client’s home for one hour and following another hour at the next clients without being given and travelling time in between.”
  • “Often when home supports exist they are not consistent in either staff or schedule. More respite hours are needed. I think that hours not used one month should be available to bank and use later on when needed. I personally had much difficulty with the provider of my husband’s PSW’s getting it our schedule right. SO bad that I had to email my requests so I had a reference copy. Their scheduling is in dire need of improvement. PSWs are generally late. It would seem due to overbooking and not allowing for any travel time between clients.”
  • “In our case his spouse was very unwilling to admit that she was unable to care for him much longer which is not uncommon. However as the person co-ordinating with the agencies for his care I had a different view of the situation. My parents lived in the country and my mother could not drive so we had to do all the driving for groceries and appointments for both of them. I found that the hours he was entitled to were very limited and I had a lot for him. (8 hrs respite per week, 4hrs housekeeping bi-weekly, friendly visitor bi-weekly, and I took him out of the house 4 hrs weekly and bathing X2 weekly) so pretty much something every week day.”
  • “Assistance in doing transfers to/from bed and personal care are helpful.”
  • “Overnight respite and emergency people to call for when you are having a rough time would have really helped. Dad was up a lot at night wandering and his spouse could not rest as she would always hear him. So one thing is to have respite overnight worker that can help out at least one night per week would support caregivers. Also maybe an emergency system with on call workers that people could use if it has been a difficult week.”
  • “A consistent delivery system of common supplies would be helpful.”
  • “It would be nice if they could provide support to the caregiver in order to reduce the risk of burnout. That would include things like meal prep, house work, laundry, grocery shopping etc.”
  • “It used to be if you needed a small job done – your gutters cleaned out, raking up your leaves at the end of the summer or a small paint job you could call a handyman and you’d find an affordable trustworthy person you to come and help you out for a reasonable price. Now everything is done by companies and franchises specializing in one service and charging a lot of money to do it. We need an affordable handy man helper. This would be real respite for us.”
  • “I think there should be mandatory respite for caregivers. They often don't realize how deeply they are being affected....they need to get away somewhere else in addition to getting respite at home. So both ways, sometimes the caregiver leaves for respite and sometimes the patient does.”
  • “I hear some people say they desperately need to get out and away from their homes, others wish their spouses/parents had someone to take them out of the house so they could be at home in peace. Respite needs to be more flexible based on the need of the person not criteria or some kind of made up math formula or algarhythm.”


  1. Family care partner education that is both practical and hands on.
  • “Training is needed in really understanding the person you are caring for, their changing needs and skill sets to facilitate their safety and comfort (i.e. fear and anxiety).”
  • “Yes, I need education ABOUT Alzheimer’s – what is dementia, what is delirium, medication information and what to expect. All of that is important. But what is lacking is the hands on stuff…how to communicate more effectively without triggering them, how to redirect, how to handle them physically if they become aggressive. How do I help feed him, get him into a car walk with him and support and approach him in real tangible ways?”


  1. Financial support for aging in place technologies and supports.
  • “Time for respite, possibly financial supports to manage "dementia specific" challenges (i.e. wandering, assistive devices, etc.)”
  • “More Assistive Tools funding to increase safety and reduce dangers are needed.”
  • “Things like those extra couple of grab bars, funding programs for GPS devises, funding the cost of basic internet, providing a tablet or laptop can help, especially in the earlier stages but even later…i.e. wandering, music therapies etc”.
  • “The tech issue that is foremost for me is that patients files should be the same across all support and medical services and accessible for all those providing care.”
  • “If a person falls in the home, they will not have the strength to lift them back up. There could be patient lifts (hoyer lifts) in the home so the caregiver can handle this kind of crisis.”
  • “Help with medications, (CCAC agencies would were there to "prompt" medication vs monitor)”


  1. More help and support for those living with early onset dementia – those 65 years of age and under.
  • “Wow! First of all, we need to do a whole lot more for early onset dementia - getting specialized medical care is difficult because a lot is for "geriatric" defined as at least 65. Our loved ones have a geriatric disease but don't meet the criteria.”
  • “Fortunately I can still get out for short periods of time but it’s not fair to leave my wife at home alone while I'm out recharging. Any adult day program type services we have encountered are for those well along the spectrum and certainly aren't very stimulating/engaging for the younger person living with Alzheimer’s.”
  • “I had no difficulty with the physical care as my husband was a very healthy guy and to a certain extent still is. What we needed was more supports, services etc. for people who are younger and have early onset dementia.”
  • “Is it Psychogeriatric care if they are under 65?”
  • “Even though I have dementia and need support, I am young. I don’t want to eat, sleep and live dementia 24/7. I enjoy community support programs for seniors that are open and economical. They provide strength and balance exercises and other activities and outings that help keep me active but don’t just swallow me up into everything Alzheimer’s.”


  1. Improved access to Psychogeriatric and Behavioural Support Services both in the community and at home.
  • “I think (although others may not) that I could have kept my husband home longer if we had had the psychiatric care we needed and therefore the appropriate meds.”
  • “Collaboration around psycho geriatric treatment: My husband was hospitalized for pneumonia. Instead of simply treating the pneumonia, the admitting Doctor changed the medications that his geriatric/psychiatrist had prescribed which had his dementia under control. This has taken over three months to correct at my husband's expense!! This made it impossible to care for him at home thereby causing his admittance to a home in a crisis state, causing him to be placed somewhere other than our choice of homes.”
  • “I had tried several years ago to get access to mental health but as it appeared we were managing too well, my cries went unheard.”
  • “Our experience was a bit screwy, as we went to emergency and the on call doc suggested the wrong thing to do which delayed our access to other medications that might have helped. There should have been immediate communication with Mental Health services.”
  • “Intervention and constant reassessment of drugs to relieve anxiety, was much too slow in our case...I might have been able to keep him home a lot longer if this had been handled differently.”
  • “How about a team for specialized nurses who visit the home at least monthly to hear the challenges and trouble shoot before we get to crisis?”
  • “Geriatric Emergency Room nurses should be in every ER to flag patients for dementia and delirium!”
  • “Wouldn't it be great if there was a mobile BSO team for people in their homes?”


  1. Caregiver Supports including: a. counselling for caregiver stress, coping skills, managing family dynamics and grief offered by a consistent party throughout the different stages of the disease b. Peer to peer support and dementia support groups, subsidized recreational activities.
  • “As much as I’ve tried to rely on the “experts” within the system, it is many times that neighbours, friends and some family that I’ve reached out to that are open to understanding dementia challenges and pitch in But I need to reach out to them and ask.”
  • “We talk a lot about the need for staff to have more dementia training, but we caregivers need that education too. Often by the time we receive it – it is too late to act on it and we’re left knowing what we should have done or could have done if we’d only had some training.”
  • “I believe we need to learn how to "Spread the Stress" so that the burden is not left on just one caregiver or even two. The families that I've seen have less crisis are the ones that have 3 or more carers to 1 person with dementia close by.”
  • “I also think caregivers will need an outlet outside of the home just for themselves. Whether that's a support group, a hobby, a gym, a social club, or whatever... that needs to be part of the lifestyle to maintain the caregiver’s health and well-being.”
  • “I am part of an Alzheimer Society support group for men that I am finding very helpful.”
  • “The saving grace for me was the support groups. If I had not had them, I think I would have gone around the bend because I realized:  A. I wasn’t the only one and B. There were people that really do care.”
  •  “I'm not sure what the right structure is but now my only point of contact has been through the Alzheimer Society and they do a great job but I wonder how strong the link is between them and CCAC. Maybe CCAC needs to develop programming for diagnosis and support for early stage. They seem to get involved pretty far down the spectrum.”
  • “It’s not easy for either the person living with it or the care partner. I’ve come to the conclusion that once you start down the dementia road, it is your whole life. It takes over your whole life. It is a totally different disease. I have a liver disease and I can leave that and live my life but you can’t ever leave or not think about the Alzheimer’s. It is 24/7 and all encompassing.”
  • The Blue umbrella program was listed as a positive project that will help make life easier for people living in the community. “If I could live in the community and had just a little more support to take a bus, go shopping or help at the bank, it would make a huge difference in my life and independence.”
  • “Maybe we need to create a collaborative centre that includes all the partners who have a piece of the puzzle. That way we can get one stop answers to all our questions and needs. I mean it’s nice that my wife and I can drive to Toronto to see our neurologist but I'm sure not everyone is able to do that so what are they doing?”


  1. Earlier and Consistent engagement with health care support and coordination.
  • “One of the themes I'm hearing is that the system operates in REACTIVE mode versus PROACTIVE and PREVENTATIVE.”
  • “It feels like (and I could be wrong) that I am just filling out forms to give them enough information to keep the brakes on and say “See you are fine.””
  • “There’s a need for proactive and innovative programs and supports for early stage. Clearly what’s being done right now is not meeting the need.”
  • “I contacted CCAC to see if we should at least get on their radar. They said that if we didn't need anything at this point it wouldn't be worthwhile. I don't think you should have to wait until you are "in need" to get engaged with the system and learn some coping skills and ways of providing better care today.”
  • “The current system does not meet the needs of this very vulnerable group… we need more preventative care for people and their families living at home in the early stages…trouble is coming and is just on the horizon, not acting until there is a crisis actual creates the crisis.”
  • “Working in the private sector, the only thing that I've participated in and have witnessed is outreach work. And I mean REAL outreach. Not just sitting in a cubicle and saying "I do outreach". It all begins with building trusting relationships and doing regular check-ins and follow ups.”
  • “Checking in often (in person – not on the phone) is essential to be able to notice and signs of potential crisis before its active.”
  • “People in the early stages shouldn’t be sent away, ignored and have to wait for care when he calls and says” Hey, this is going on and let’s gets ahead of it now while we can. They should at least assign you a coordinator or care manager.”
  • “CCAC should not be allowed to send you away empty handed when you reach out to them. They are the first access to anything, even day program which is needed early on. If the need isn’t there yet….at least begin the conversations and start to set things up for when they are needed and send them to the resources and supports they need right now.”
  • In our current system we seem to have "heart clinics", "cancer clinics" etc. but we don't have a "denote clinic". In fact as far as I know the neurology department doesn't have anyone focussed on dementia (maybe that's not the case but if so I'd like to know about it).”
  • “The system needs to go beyond our current assessment methods.” (Two people reported that their assessments for whether or not their spouses need more care were recently conducted on the phone NOT in person and they were not included in the conversation.) “It needs to be more than just filling out forms and ticking boxes.”
  • “At first you just didn’t know where to turn or what to do and now it has all happened so fast that I feel like there are almost too many people involved. It is just mind boggling.”
  • “I have a background in social services and I was still having trouble finding my way and opening doors. Sometimes you just feel like you are in the mud spinning your wheels and it is so very frustrating.”


  1. Creative and affordable Supportive Living solutions for both the person living with dementia and their spouse/partner.
  • “In hind sight, I’m not sure if keeping them at home longer is what we need. I think we need affordable housing that individuals could be together much “like” a nursing home at night, but during the day the spouses could be there to look after their loved one as usual. Maybe something like Ronald Mac Donald House, but have ready-assistance if they need it.”
  • “I often wished that there was Assisted Living for my husband and I could be much more useful in his care, but would need to know that back up was right down the hall so to speak. This would have changed everything for us.”
  • “Even if you lived somewhere “normal” but there was some kind of emergency support to call when things were tough. I might have been able to handle things then.”
  • “There needs to be some kind of supportive assisted housing that is affordable. I would love to share an apartment with my husband somewhere where there was a little help right down the hall but not completely “long term care”. Retirement homes are beautiful but so outrageously expensive and aren’t geared to people living with dementia. This will be our tipping point.”


  1. Improved and mandatory dementia education for any staff person who provides support or health care to people living with dementia and their family care partners.
  • “Sadly, many staff who serve families living with dementia are less knowledgeable about the needs of the families going through the dementia.”
  • “When it comes to providing care, many need education to support younger people. They are designed and trained to support the frail and the elderly.”
  • “People who serve families living with any kind of cognitive impairment should be mandated to be knowledgeable about dementia.”
  • “Staff trained in all areas of dementia”
  • “There is still a great need for dementia education. We pretty much had to educate our own family doctor. She didn’t even know that an Alzheimer Society existed in this area. I knew about some of the services because I knew people who were going to things, but had I not known that we would have been fumbling around a lot longer with this referral to mental health services.”


  1. Access to Adult Day and Evening Programs and Respite.
  • “Access to Day Programs (without long lists and in settings other than Long Term Care), why are there not privatized Day programs?”
  • “When things became more stressful with my husband, then I was lucky enough that both children lie in the vicinity. That is not always possible. I was also fortunate enough to have some amazing friends that were there to give me that break. I don’t know what I would have done without them. What do people do when there is no one to give them that break?”
  • “Support for families during hospitalization is a huge gap.”
  • “The Adult Day Program is a relief for me as a person living with dementia, I wasn’t keen to start the program when it started –but it is a place where I am comfortable in. We’re all in the same boat and no one is going to have a fit if I can’t remember their name, or say something stupid or babble on. I feel safe there. I find I am going out less to other things because I embarrass myself. NO one judges you there. The girls are wonderful people and there is a variety of stuff to do.”
  • “I didn’t want to go and now look forward to the Adult Day program and I am tired when I get home.”


What was or would the “Tipping Point” be?  Key Findings:

  • “I was afraid of being hurt due to aggression and also just exhaustion.”
  • “The sense that I wasn’t being heard by the system care planners, that they really weren’t proactive or taking me seriously was a tipping point. I don’t think they were very astute about me beginning to fall apart no matter what I said or did. I would show up raving at the office in tears and all we would be was a bandaid.”
  • “Until there is a crisis episode, the system doesn’t kick in. Often by the time they do, it is too little and too late.”
  • “After 3 years we were all very tired. I can’t begin to imagine how tired my 88 year old mother was by the time admission came. One thing you have to remember is that the spouses are not trained in any type of mental health or nursing care so it is very difficult to win them over with different techniques that could change some of their spouse’s behavioural issues. They don’t truly understand the cause and effect of the behaviour and are also so tired they don’t have the energy to try some of the techniques we talk about. We had the added bonus of my Dad leaving the house or letting strangers in.”
  • “The tipping point for me was not enough support around responsive behaviours, medication, care and my lack of knowledge. Everything became too difficult to manage.”
  • “I think the tipping point is when the caregiver can no longer provide the support necessary to safely keep the person in the home. There may be many reasons for that e.g. caregiver burnout, aggressive behaviours, lack of support, the person becoming too physically demanding or wandering etc.”
  • “The behaviours were unrelentingly scary. He was terrified throughout the day. The physical care was not an issue it was supporting his anxiety and behaviours.”
  • “The tipping point for many families would be physical and mobility challenges that cannot be handled by one caregiver. An example would be the inability for the caregiver to move their loved one around from lying in bed to sitting on a couch or getting them to the bathroom.”
  • “My husband was hospitalized for pneumonia. Instead of simply treating the pneumonia, the admitting doctor changed his medication that the geriatric psychiatrist had prescribed and had his dementia (and behaviours) under control. This has taken over three months to correct at my husband’s expense! This made it impossible for me to care for him at home and thereby causing (the tipping point) his admittance to LTC (in crisis) and to be placed somewhere other than our choice of homes.”
  • “Another tipping point is when some caregivers have to decide on a career/livelihood versus caregiving in the home.” “I am witnessing my mother’s struggle right now. She’s had to take a leave from her job to take care of my step-father but won’t be able to do this over the long term.”
  • “I think often the tipping point is not really the tipping point at all. It is just sheer exhaustion, grief and despair that all get triggered – often by one or two events that send everything crashing to the ground.”
  • “There is often an “event” that prevents that caregiver from providing a safe environment at home. Sometimes a caregiver burns out, breaks a leg/hip, can’t get enough sleep etc.”
  • “A million little breaks lead up to one key event that becomes the tipping point.”
  • “I knew I wasn’t able to provide him the kind stimulation and support he needed. He needed a team and I just couldn’t meet all his needs anymore. I was so tired from trying.”
  • A common tipping point story is when the person goes to the hospital for a surgery, health crisis or injury. Although the family does not want to send their loved one to Long Term Care, the hospital is pressuring them to take the family member/friend home sooner than they feel physically or emotionally prepared for. People regularly use words like “bullied, intimidated and forced” to describe their experiences. This is a time when communication is most inconsistent and caregivers feel the most alone, misinformed and unsupported. At this point, families become completely overwhelmed and just walk away. Advisory members have suggested the need for a transitional supportive hospital wing or staffed short term respite-recovery location that patients could access and slow down the transition from hospital to home. This might help with this very emotional tipping point.


This Summary was prepared by:

Sharon Osvald
Lived Experience Facilitator (South East & Behavioural Supports Ontario)

Providence Care Seniors Mental Health and Behavioural Support Services
in partnership with the Alzheimer Societies of S.E. Ontario & BSO Provincial Coordinating Office in partnership with brainXchange

Home office: 613-475-9943

Exchanging Knowledge, Partnering for Change

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June-July 2017 Resource Exchange Findings

June and July 2017 Summaries Resource Exchange - SE Ontario Lived Experience Network:


This Lived Experience Resource Exchange for June and July 2017 is a summary of face to face conversations, one SE Ontario live (typed) chat conversation and one provincial live (typed) chat event. These conversations involved input from forty-one people from across all of South Eastern Ontario. All forty-one people were spouses, adult children, family or friends of older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in June and July 2017 happened 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.

June - July 2017 Face to Face Advisory Conversation Summaries:

Barriers to Receiving Quality Care

  •  “A lack of consistent and accurate communication while in Emergency Department or in Hospital resulting in family/care partners being told conflicting information about care options, departure dates, supports that they are eligible for and who they should be reaching out to. Families report feeling they were “on a roller coaster”, “didn’t know who to trust”, “out of control and on the verge of breakdown”. “Plans and instructions were changing even within the same hour from people in the same department. My husband was already very ill; this just added a constant layer of anxiety when we were already wracked with grief and worry.”
  • We had an issue with communication when we were being discharged from the hospital. We were supposed to be signed up to receive extra care and support when my husband returned home, but it had not been done on the computer so nothing was prepared for us. We got lost in the process and didn’t have the extra support we needed. This caused a huge gap for us.”
  • “Long waiting lists for services are an issue. We were told it could take three months or six years for my husband to get a bed in LTC.”
  • “I understand the reasoning behind it, but I think it is wrong that people are told “their file is closed” or “they are discharged” when receiving care and they live in the community. That leaves it up to us to chase them down again when things decline. It just leaves you feeling in limbo, no dates to check up on you again, starting from scratch all over again. Can you imagine if you had to do this every time you went to the doctor?”
  • “What is going on with CCAC? Do we call the same number? Is it the same person? Are they offering the same services? I haven’t been told anything. I believe once you are their “client” you should stay their client.”
  • “One real issue is a lack of training and understanding of dementia in retirement homes. More and more people are finding themselves in retirement homes for respite or because they can’t get into LTC. My mom suffered second degree burns because people didn’t understand her needs and her disease when they were helping her to feed herself.”
  • “I hate it when they have an assessment and it just happens to be on a “good day”. It is difficult to really communicate and display how a person with dementia lives on a day to day basis when they are being assessed for services and supports.”
  • “An issue we dealt with was that pharmacists seem to be encouraged to change their drug prescriptions to generic drugs for cost savings. They claim they are the same, but my husband had a terrible reaction after being switched to a generic drug. As soon as we switched back he returned to normal.”
  • “One barrier we face is the rules that exist for giving medication that our home care provider has. Some staff are not allowed to administer prescription drugs, others are not allowed to apply an over the counter topical cream he needs. All of these factors make it really hard for me to leave him.”
  • “In our situation, I wish the home care visits were longer and less often. That would work better for us.”
  • “Consistency and Access in home care can be an issue. My wife needs the same person (or as few people as possible) every time. We need consistent times- right now we are working around their schedule which varies - not them working around our needs Finally, there are many times we need respite or care that staff are not available like weekends or evenings. Week day help is appreciated, but it is not enough when you are doing this over the long term.”

Supports that Help:

  •  “When my husband was being diagnosed, our doctor was amazing. He was so supportive, gave us the information we needed and helped link us up with the care and supports we would need in the future. Although, it was a terrible time, we were able to have a good experience. I still feel very informed and supported.”
  • “It doesn’t take any more time or cost anything – but a little compassion and knowledge goes such a long way. These people make all the difference.”
  • “It would be so helpful if there were social workers for family members attached to Long Term Care Homes or Adult Day Programs. There is so much loss and stress to absorb and no time to absorb it.
  • “I was very grateful for the help we had to make our home safer. People came and did a safety assessment on our house and that has helped some with my husband falling.”
  • “If it wasn’t for the day program and overnight respite, I would have crashed a long time ago. The day-away program my husband attends does a great job. They interact one on one, so I can relax knowing he gets attention, care and that they are doing things with him.”


June SE Ontario Live Chat Summaries:

June 2017 Live Chat Topic: This topic focused around self-care and what things help family/care partners and “keeps them going”.

Supporting someone living with dementia or a similar diagnoses, can be a joyful and fulfilling experience, but it also can be long and difficult. A common question that is asked of families/ care partners is “How do you do it?” and “What keeps you going?” Maia (also known as Bluebird on the lived experience café) was the first member to share her insights with the SE Ontario Lived Experience Network. Since that time, Maia’s experiences have included her husband transitioning from their home, to being cared for in different long term care settings before passing away a little over a year ago.  Maia (Bluebird) will be joining us and sharing some of her insights on what helped her to cope and to continue growing and thriving as a person throughout her and her husband’s dementia journey and beyond.

  1. Come prepared to learn – and share – what keeps you going in your journey? It is my hope this chat will be encouraging to the participants and will also inform the health care system as we identify things that help families/ care partners to cope and live well.

Key Findings:

Becoming an advocate and involvement in helping others and helping improve health care for older adults has been helpful:

  • “This forum (The Lived Experience Network) was a bright spot in my journey. It gave me a place to offer help, share my story and advocate for change. That was a step in making sense of this journey.”
  • “I promised myself at the beginning that I would not be a victim to this. And part of that for me was deciding to be a part of improving the system and environment. That’s been very empowering.”
  • “For me being part of this group has been key and knowing there are others out there going through exactly what I am going through.”


Taking Care of Their Physical, Intellectual, Emotional, Spiritual and Social Needs

  • “It was important for me to know this was NOT a dead-end street, and it was NOT going to claim a secondary victim – (me).”
  • “The only way I know is to continually review, what’s working, what isn’t, how am I doing today, what do I need to do to look after myself? Whenever I start to feel defeated, I review and change what I do.”
  • “Too many caregivers pass before the actual person living with dementia does.”
  • “A former pastor friend of mind told me he buried more caregivers than people they were caring for. He regularly checked up on me and was one of those who encouraged me to have my own life.”
  • “As a daughter, I have to remember not to let this claim a third victim: my husband, my children and my marriage.”
  • “It’s important to keep connections to all sides of ourselves: physical, intellectual, emotional and spiritual.”


Self-Care: Support from support groups, friends and family

  • “Support groups have a very special place, but it must go beyond that. There has to be a circle of support of people that are close to you and helping you.”
  • “I appreciate the support group. It is an avenue where I can vent and not burden my kids with my problems. I can learn from others about their journey and how they have coped and what resources are available to us.”
  • “I send a weekly newsletter to my family members to keep them up to speed and it helps make them feel more connected.”
  • “Having friends and a support system in place to listen and care for us and help us strategize is needed.”
  • “I find that family members either can’t cope or don’t know what to do, it’s not necessarily that they don’t care, but still it would be nice to have more support.”
  • “It is also important to maintain some contact with community that is not about the dementia to make us feel like we are still normal.”
  • “I truly believe that my faith and the support group saved my sanity.”

Self-Care: Physical Needs – sleep, exercise, eating healthy, rest and respite

  • “The caregiver day the Alzheimer Society puts together (focused on rest and providing respite) is a great stepping stone to self-care.”
  • “Being physical is helpful. Sometimes just going to the gym and just working out for an hour makes me feel better. I sometimes climb Mount Pelion and look down on the city. (Getting outside) I am alone up there and it is relaxing.”
  • “I find it is so important for me to get away from it all, even if it is around home. That rest is so necessary. I’ve been enjoying gardening, I love to paint and draw. Sometimes I just need to spend a couple of hours with friends. It is so easy to just give in and stick around home and work, work, work and expose myself constantly to the stress of caregiving.”
  • “Eat, sleep and look after your physical needs. Get a massage; make regular doctor and dentist appointments. This is so important.”
  • “And getting sleep may involve getting people to help. It was something I was hesitant to do. That would change if I could rewind the experience.”
  • “No one can think clearly or be objective and come up with strategies for caregiving…or just living when they are exhausted.”

Self-Care: Things that build emotional, intellectual and spiritual health:

  • “One really has to decide what your limitations are and learn to accept them. It is OK not to superwoman.”
  • “We have to change our thinking, not over think and try to think positive and grateful thoughts.
  • “Stand-up comedy is used in different support groups. I have seen some mental health shows too that have been inspirational and therapeutic.”
  • “Being able to laugh at yourself, your situation, at some of the ridiculesness of the disease is very healthy. Mom laughs with me. The disease isn’t funny but sometimes the things that happen because of it are.”
  • “Leaning how to be gracious with people who want to fix you and your situation is a good skill to learn and not letting your inside voice get out when people are trying to help in a non-helpful way.”
  • “I am a great advocate for creativity being wonderful therapy and healing in nature.”
  • “Horticultural is excellent for people living with dementia and family.”
  • “I play piano, it is my creative therapy. Sometimes I make up sad songs – sometimes angry ones.”
  • “Creative, physical outlets like exercise, getting alone time to pray or meditate, being in nature, singing and spiritual strength as well as respite…all helpful to help you thrive as a person and caregiver.”
  • “Living in the moment is something I learned from my husband living with dementia – taking walks, watching birds, the clouds a sunset.”
  • “Our little dog is quite the tie that binds. It is really therapeutic for both of us.”
  • “Screaming in my car…letting out the anger frustration and resentment.”
  • “I prefer laughing to screaming.”
  • “Gratitude is another thing I recommend. This changes your focus and your thinking.”
  • “I got a book that a geriatric mental health person told me about by Oliver Sacks entitled “Gratitude”.
  • “Listing gratitudes and intentions is a process followed by a group called “Intenders”. This was a great support for me. ( The exercise of intending takes one out of victim mode.”
  • “Books are uplifting too.”
  • “I really like the spiritual connection of this chat. I have experienced spiritual things that made grief more bearable.”
  • “When I’m feeling low, I listen to “You Can Heal Your Life” by Louise Hay or Wayne Dyer’s CD series from “Inspiration”. I always end up knowing I can handle whatever comes.”
  • “Having a passion of my own, apart from caregiving is good therapy.”
  • “Learning to be “weak” and ask for help, crying on the phone if necessary.”
  • A good friend of mine says she gets up every morning and puts on the song “Lord, I Need You”, and that helps her get through the day. I also get my strength from my faith and the faith community I am a part of.”
  • “I wouldn’t get out of bed for five years without meditating for twenty minutes.”
  • “Spiritual/Motivational music is something I regularly listen to. It helps me to re-focus on the positive and possibilities.”
  • “Music is an up lifter for me too. This year I have decided that I am going to sing every day, I am no singer, but it makes me feel good.”
  • “Sometimes music allows the tears to come which can be a good thing.”
  • “I am not different than who I was when I walked into this. But not entirely. Maybe I found more of myself and my own strength.”
  • “And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain: When you come out of the storm you won’t be the same person who walked in. That’s what the storm is all about.” Haruki Murakami

June Provincial Live Chat Summaries:


Our June 2017 Provincial Live (typed) Chat event on included thirty-three lived experience advisors from across the province and twenty two people emailed in their answers. Thirty five communities were represented and ten of these participants were from the South East Region.  


With the Ontario Dementia Strategy determining adult day and evening dementia programs to be a key area of investment in their strategy, The BSO Provincial Lived Experience Advisory engaged individuals with lived experience in the provision of feedback on adult day/evening programs. The Advisory invited feedback from Lived Experience Advisory participants and also reached out to dementia adult day/ evening program staff, volunteers and participants from across Ontario. The Advisory hosted a (typed) live “chat” event, along with special guest Michael Campo, Senior Policy Advisory from the Ministry of Health and Long Term Care with tailored discussion questions. Thirty-three people participated in the live chat discussion and another twenty-two people submitted their answers by email or phone. Thirty-five communities were represented:

 The purpose of this conversation was to learn more about what’s working well in dementia adult day/evening programs and what barriers may need to be addressed to enhance the programs.  The Live (typed) Chat event (hosted on took place on June 21, 2017, asking the following questions:

1)    What elements make an adult day program successful?

2)    What barriers or challenges have you faced in accessing adult day programs?

3)    What services are not currently offered within adult day programs, but should be?

4)    What advice would you give to policy makers to enhance access to or enhance the impact of adult day programs in your community?


As a result of the discussions, key themes emerged:

• Access – how to find, qualify and gain access to adult day/evening programs; long wait lists; affordable programs; dementia-friendly transportation; how to promote dementia adult day/evening programs to the general public and reduce stigma

• Care and Compassion – continuous promotion of dignity and person-centered care; specialized training for staff and volunteers; support and education for family care partners

• Flexibility – needs-based meaningful activities that focus on strengths and capabilities; different options based on needs (e.g., bringing a bag lunch); programs for specific populations (e.g., hearing impaired, dual diagnosis and younger participants); crisis placements; flexible hours; and evening, overnight and/or weekend adult day programs

• Environment and Design – home-like atmosphere; outside spaces; quiet spaces; food prepared on site; and speciality services made available such as specialist consultations, bathing, foot care, beauty, occupational and physical therapy, social work, counselling, behavioural support, etc.

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

  1. What elements make an adult day program successful?

Key Findings:

  • Dementia- Friendly Accessible Transportation:


  • “Accessible door to door transportation is needed, particularly in the remote or rural areas.”
  • “So many challenges with getting affordable transportation for people living with dementia that doesn’t require a companion to travel with them.”
  • “Some major contributing factors to our successful program are the volunteer drivers who make it possible for a client to attend and staff who make it worth the client’s time.”
  • “In our area, the majority of Day Programs do not provide transportation, we work with the regional or public transportation services or other partners like Red Cross. However, the majority of transportation is provided by caregivers.”
  • “We rely on Red Cross/ Caravan and/or caregivers. In our area, Red Cross cannot accommodate wheelchairs.”
  • “Often these services are not always reliable, or pick up windows are not accommodating to people who work.”
  • “I live in North East Ontario; the distance is an issue. Our catchment area would be 60 to 70 Km each way to get to the central community. We have no access to any type of transportation other than that supplied by family caregivers.”
  • “We offer day programs with evening hours and weekends and our community service partner is not available at that time. Our municipal accessible transportation doesn’t recognize dementia on its own as a disability, so if someone is physically well, but is living with dementia, they do not qualify.”
  • “With our Young Onset Dementia program, we have to provide transportation for all participants because the spouses are working.”
  • “Transportation is a bigger issue with our evening and Saturday programs as some providers do not offer these hours.”
  • “In regards to transportation, we have buses on which staff are available. Some, but not all clients have a designated staff member on the bus. The staff member supports the clients and reduces absenteeism rates. Seeing the staff member at pick up enforces where the client is going for the day.”
  • “My Dad was too physically fit to take the wheelchair bus, so he couldn’t get to the day program in his area. It was a half an hour drive.”


  •  Meaningful Activities that Focus on Strengths and Capabilities Promoting Dignity and Independence:


  • “My husband was diagnosed with Alzheimer’s in 2014 and at the time he did not handle it well. Since then he has been attending the adult day program now three days a week. He enjoys it so much; he calls it “his work”. I don’t know what I would have done without this program. The staff are wonderful caring people and my husband enjoys the interactions with them and other clients.”
  • “The staff are outstanding and responsive to their clients and caregivers. There are strategic, appropriate programs that help clients maintain a degree of independence.”
  • “My husband’s day program was wonderful at keeping folks engaged and finding the things that they enjoyed and finding ways to include that in their day.”
  • “My father, a very shy and intelligent man, joined Adult Day in 2010-2014. We never thought he would go, but they knew him well, called it “his meeting” and he looked forward to it 3 days a week; we felt he was bored on the weekends at home.”
  • We have many clients who love attending once a week or on a daily basis, some call it school, group or club.”
  • We referred to the Adult Day Program as “The Club” and that is a more positive term. It suggests I belong.”
  • “The fact that my husband attends the day program in the same location that he goes for respite is extremely valuable. He feels he’s a volunteer when he goes [which gives him] purpose. As his behaviours are changing it is becoming more difficult though because there just isn’t enough staff to support these increased needs and the safety and acuity of the other people attending the program.”
  • “The person with dementia is treated as a person. The staff get to know the person. Perhaps this is because there are fewer people in a day program than in a home within LTC. The staff try to do things that interest the participants (e.g., reading, watching a movie, making a treat, eating a treat, playing bingo). As is stated many times, LTC is task driven.”
  • “Strong Adult Program Leadership is essential to a program’s success.”

· Caring, Safe and Homelike Environment:

  • “I think a nice “homelike” environment is key. We have different centers in different types of buildings and our most successful one is our location that is very homelike. It seems to have a calming effect on our clients.”
  • “All the staff are so great and compassionate.”
  • “Day programs are successful if you have the right environment and the right approach.”
  • “I have no idea how my husband and I would survive this journey if we did not have this support system. I truly believe I would be unable to carry on working as well as being an effective caregiver.”
  • “The Day Program was great for my mom for a long time. It was good because the people that worked there were caring, welcoming, they engaged her using likes and dislikes”
  • “Access to a variety of activities for the varying cognitive disabilities, appropriate supplies that are suitable for clients, functional stations for different activities, more community programs that come in and provide services to existing clients such as exercise, fall prevention programs, expressive art therapy etc.”

· Knowledgeable and Educated Staff who Value Person Centred Care :

  • “Continued education for all disciplines of staff is essential.”
  • “At our center, the day program staff are very well educated with credentials and stay updated with progress in research/the field by attending workshops and conferences.”
  • “The greatest element in a successful day program is the education and knowledge –base of its staff. My husband spent 8 years in an Alzheimer Day Program.”
  • “Montessori programming, meeting leisure needs and interests, knowledgeable and educated staff and a client centred approach is essential.”
  • “Well educated staff and ongoing learning opportunities on a regular basis for them to learn about different methods and techniques that are constantly changing within the activation field. Staff with good background knowledge, trained in fields such as therapeutic recreation. “

· Flexible Hours, Availability and Affordability of Adult Day Programs:

  • “Peer to peer support and education for family caregivers” was suggested by a participant as it was noted this would provide family care partners with the advice they need when difficult problems/questions arise.
  • “To my knowledge, there is only one secure facility that exists in our area which accommodates about 8 people and which gets fully booked very quickly. They cannot accept patients who require lifting or who have complex medical conditions.”
  • “Caregivers have shared with us details about programs that their loved ones attended including some offering some flexibility in hours and days of availability. More evening programs would help those caregivers who work a later shift, knowing that their loved one is cared for and enjoying the socialization of the program.”
  • “We need short term overnight respite because some of us caregivers don’t get enough sleep at night over the long term.”
  • “Overnight respite can help people sustain being a caregiver longer. Sometimes people just need a night or two. Many homes require a two week minimum stay.”
  • “There is a very serious lack of short-term overnight respite options for people with dementia. For the few programs that do exist, it is difficult to get a booking.”
  • “We often hear from caregivers that they would like us to provide overnight care and day care in the same place. They feel it would greatly benefit the client.”
  • “I really believe a major reason people living with dementia go to Long Term Care earlier than needed is ‘caregiver collapse’ without enough support. I have friends who have tried to get 2 nights a week overnight relief, but funding is so limited.”
  • “Affordability is also a real issue. Subsidies where families can choose how they want to spend their money whether on home care, day programs and transportation should be made available. More choice is needed for family care partners.”

· Additional Services and Programs that Target Specific Populations:

  • “In our region we have a unique program geared specifically to folks with Young Onset Dementia. Their own program, designed with activities they decide.”
  •  “Typically day programs serve people who are in more advanced stages of the disease. My wife has attended some programs available to the general public, but they don’t fit her needs because the leader is not familiar with the special needs of dementia. Not only do they not adapt their programming to accommodate the person with dementia, but they often unintentionally embarrass the person by centering them out when they can’t stay with the rest of the class.”
  • “Additional services, such as bathing programs, foot care, beauty salon; extended hours of operation, monthly caregiver nights (where clients are taken care of while caregivers attend sessions) would be helpful.”
  •  “Caregivers have said:  the day programs are filled with such great staff who are skilled to help with so many diverse needs. Many programs that are operated by our organization offer many internal and external services (e.g., chiropody, haircare, physio, bathing etc.) which are a big help for caregivers who have difficulty getting their loved ones out or have difficulty with limited resources. They also indicated more availability of evening programs to accommodate caregivers working evening shift and more transportation! Accessibility, Availability and Flexibility.”
  • “Occupational Therapy, Social Work, Physiotherapy would be beneficial.”
  • “For months now I have been trying to arrange interpreters for father (who is deaf) so he can access and participate in a day respite program. My mother and I have been told there are no funds available for service providers to provide interpreters for 1-6 hr day in a respite program. This is a violation of the AODA standards for people trying to access services. Prior to the day my father went to visit a day program we were told an interpreter would be available for 2 hours (not the 6 that was promised). After that visit, no interpreters have been provided by either OIS or the organization. All claiming funding issues. Deaf people who want to participate in these programs are forced to sit by themselves while people smile and make gestures.”

· Nutritional Meals and Snacks:

  • “Nutritional Meals and Snacks are important.”
  • A nutritional, hot meal is important. For my dad, that was the only real meal he got all day.”
  • “We have a chef on site. Food is a huge social feature. Also it is an activity, makes the environment more home-like and stimulates the appetite.”
  1. What barriers or challenges have you faced in accessing adult day programs?

Key Findings:

· Availability and Access – Long Waiting Lists:

  • “Waiting lists are a barrier. There are not enough spaces. My wife is on a waiting list for day program admission for 2 days a week. We have been on a waiting list for 8 months!”
  • “We also have waitlists of 3-5 people per day.”
  • “Our Adult Day Program waitlist sits at about 70 people and the person at the top of our waitlist has been waiting 8 months. In my situation (i.e., still working) day program is critical!”
  • “We are trying to offer innovative ways to create contacts and provide respite, in the meantime. It is unfortunate that by the time clients can enter our day program their decline has already been significant.”
  • “Long waitlists due to limited funding. The day program could accommodate more clients and staff if there was more funding to do so. There isn’t enough money in the meals budget or wages to feed extra clients for the day or pay extra staff to bring more clients, but there is room at the program to accommodate more clients and eliminate the waitlist.”
  • “There were 2 barriers. One was space availability. The Adult Day Program we used had a max of about 15 people. We had to wait about four months. Second was access. We could not use wheeltrans because they would not go into the apartment to get my mother nor go back and take her to the apartment suite. We feel that my mother would have gotten lost in the apartment building itself (being unsure what floor she was on).”

· Process and Referral Pathways:

  • “Our barrier at times is to get referrals. Our sole referral source is the CCAC and we sometimes have a hard time getting referrals sent to us.”
  • “Our challenge in attending the Day Program was the fact that the CCAC coordinator did not support a referral. It was only when my husband qualified for Health Links that he was able to apply. Better coordination between the LHIN and the day programs would be helpful.”
  • “Some barriers for people to get in our program include not having access to a doctor. We need a diagnosis of dementia for clients to come to our program and this can be a challenge to get at times. Sometimes families are not told that their loved one has dementia. This makes it difficult for caregivers to know what they are dealing with too.”
  • “With children being spread across our country, sometimes parents are being moved to different provinces so a son or daughter can look after the person. We had a caregiver call to try and get her mom into our program who moved to Ontario from Manitoba and is on the LTC list in Manitoba but cannot access community services in our province because the mother does not have an OHIP card. She could not afford to hire private care so what is her daughter to do?”
  • “All referrals to the ADPs are to come through the CCAC.  This has been a process we try very hard to support but the difficulty is the wait time a potential client endures from their initial request to the time CCAC is able to conduct the RAI HC assessment.  CCAC Care Coordinators have large patient portfolios and are not always able to schedule the assessment within a one or two week window.  I do have a coordinator that is trained to conduct the RAI CHA assessments and could get out to a potential client’s home immediately in order to minimize the wait time to onboard a client.  We have noted that if a potential client and caregiver are made to wait for a lengthy period they have commented perhaps it is not a crucial request and will make do with no additional supports.  We then get calls and lots of tears due to caregiver burnout, sickness, etc.”
  • “Privately owned day programs are not given to families as a viable resource when they are seeking services from CCAC.  They may only be entitled to one or two days under CCAC.  Some families need more support and this is where privately owned seniors day program can be given as a resource instead of having senior wait on long waitlists.”
  • “We need to move away from CCAC held waitlists and offering openings/spots to people who are ready to attend today.”
  • “It would be helpful to have more flexibility and more than one access point for referrals.”
  • “As CCAC are responsible for managing our referral list, it is important for the lines of communication be fluent and that all case managers are aware of the services that Adult Day Programs provide. It can be challenging for the caregivers waiting for them to send the referral through in an expedient manner.  In our day program we consider all clients and welcome them to come and see the program first and we will then send the referral over to the CCAC.  If we miss this important step, we may run the risk of losing the client as caregivers can find navigating the system a challenge and the barrier to service becomes more evident.”

· Communication Between Day Programs/Community Services and Shared Records:

  • “I think more communication between the day programs would help especially if there are shared clients.”
  • “And with other service providers, shared records would be great support.”
  • “It would be great to have access to the CCAC CHRIS database, so we could communicate with care coordinators about clients, rather than playing phone tag for weeks on end.”
  • “It would be great to be able to write a note to a care coordinator so she/he could follow up in a timely manner and create a better more seamless service.”

· Better Promotion of Programs, Education and Help to Families Navigating the System:

  • “For new caregivers, they need to know what services are available and how to start.”
  • “The day programs are not properly promoted or represented. Information on day programs should be more readily available and should be discussed as an option. Some caregivers found that in hospital this information was by-passed for automatic conversation about retirement or long term care. We should have a section on the government’s website to explain/see what is available to a caregiver. There also should be brochures of all adult day programs in specialist/doctor offices.”
  • “There definitely needs to be more education to the public about day programs and their benefits. Often people only know about LTC or retirement and adult day programs are significantly more affordable than home care.”
  • “Agreed, I did not get any info about Adult Day Programs until one year after my wife’s diagnosis.”
  • “We often hear from caregivers that they wished they knew about Adult Day Prpgrams sooner. Many say they wished primary care had known about it at a time of diagnoses and provided them with information.”
  • “I heard about Adult Day Programs in a group coffee break; apparently the Adult Day Program was the “best kept secret” in our area.”

· Increasing Adult Day Program Staff Wages to Improve the Retention of Skilled Employees

  • “Specialized training needs to be made available and wages must be increased. We are in a constant battle of good team members leaving for high paying LTC jobs.”
  • “There needs to be enough funds to pay for the program.”
  • “There needs to be recognition that we serve a very complex group of folks, risks have increased and funding has not kept pace.”
  • “We will need increased funding to retain valuable employees.”

· Location, Affordability and Accessibility:

  • “The location can be an issue. It might not be a senior populated area. Also, some facilities are not wheelchair friendly.” 
  • “The fee to attend our Adult Day Programs is $19.00 per day.  This does pose difficulty for some clients because they also pay other agencies for transportation to and from our programs.  Quite often I am providing a reduced fee for clients if deemed essential.  Do we foresee a time when the ministry will absorb the entire fee to better support these vulnerable clients?  Doing so would increase the number of clients registered to our programs and would also allow clients to attend multiple days each week rather than just one attendance each week.”
  1. What services are not currently offered (or are not widely offered) within adult day programs, but should be?

Key Findings:

·  Personal Care, Specialty Care, Education/Training & Behavioural Supports

  • “Bathing, Foot Care, Falls Assessment.”
  • “We do not have foot care or dental care onsite in our area.”
  • “Exercise Programs, Nutrition Education, Senior Abuse Education, PSW Services on site to provide assistance with personal hygiene and feeding, Musical Therapy.”
  • Assistance in getting the individual ready to leave home in order to go the program, healthcare monitoring by qualified staff on issues such as medications, blood pressure, blood sugar levels, cholesterol, dressing changes and general health status and Multidisciplinary consultation which includes Physical Therapy, Occupational Therapy and Speech Therapy to enhance physical and cognitive functioning, thus supporting independence with activities of daily living.”
  • “It appears that there is not enough home care hours offered for bathing.  The Adult Day Programs could offer bathing to existing clients, and also consider offering a bathing program (shower) to clients in the community.”
  • “Offering bathing for a charge takes so much stress off the caregiver. Also, many families do not require adapting their own homes to accommodate changing mobility and dementia design needs for bathing.”
  • “We have trouble accommodating folks who smoke. Our program area is secure and there is no way for us to provide a staff person to accompany someone outside for a cigarette.”
  • “Counselling for clients would be beneficial. Clients who are in emotional angst need academically trained people to help them. Validation only goes so far.”
  • There is a need for accessibility/availability for programming for younger adults with Alzheimer’s. Perhaps offering a program for children and youth that could help these younger families cope with the changes with their loved one, parent or spouse.”
  • The folks in our region named themselves YODA – Young Onset Dementia Association their program is focussed on activities in the community as a group, volunteering, visiting, historic sites etc.”
  • “Also, those with developmental delays, who are living with dementia, are limited when it comes to their care needs. “
  • “I feel a social worker should be available for caregivers. Is there any day program that offers this support to families?”
  • “Some of our folks would benefit from 1:1 attention, but that is not sustainable to help manage responsive behaviours.”
  • “There are more complex clients waiting to attend. If we could have LHIN-funded nursing staff, GAIN team support staff make visits to the Adult Day Program, we could take higher needs clients.”
  • “BSO onsite staff has been wonderful for helping us with strategies for our clients with responsive behaviours’ the role of the Community Support Worker is great.”
  • “Nursing support is key. Medical issues and concerns, mini strokes and UTI’s are constant. Families need knowledgeable eyes and ears to prevent further issues.”
  • “We have clients who need a de-stimulated 1:1 environment, however we are situated in a group environment – it takes a really caring and stretched team to provide the quality care.”
  • “Space that involves secure outdoor space and space to rest or wander without risk of harm.”

· More Short-term Overnight Respite, Flexible Hours and Programming:

  • “I think that services, such as weekend day programs might be helpful for some caregivers. Our program runs Monday to Friday. Their caregiving does not stop on Fridays. We don't have the funding for this.”
  • “Day Programs offer some overnight and respite relief to caregivers.  Our program is funded for some overnight weekends, but the program lies idle every evening, when the space could be better utilized.  The overnight respite proves costly and the day programs are not funded for enough overnight to staff and run on a regular basis.
  • “There should be freedom of choice through the day. Active places, quiet relaxation places and even nap rooms available.
  • “If it was not for respite stays (3-7 days) I was not able to attain for my husband, I would never have been able to have cared for him at home for the 8 years.”
  • “Having a drop-in program for caregivers needing help and having “crisis spots” available would be very helpful.”
  • “I think it’s not about separating the younger from the older, but offering a variety of programming choices so that its small groups based on friendships and interests.”
  • “Private day programs should always be given as an option through CCAC.”
  • “Day programs that have their own vans/buses for transportation of participants and offer total door to door assistance.”
  • “We offer the daily program fee, separate from the meal cost, so they can choose to bring a meal or purchase a light or full meal, depending on their budget.”
  • “Flexibility of when day programs can be used; occasionally, 1 day a week, 4 hours a week etc. Every family’s needs are different.”
  • “Flexibility in the scheduling of services. Some clients go away with their families for several months then have to reapply through CCAC when they return.”
  • “Some caregivers have expressed why can’t they choose the day programs they wish to apply for? Why the middle organization as the gatekeeper deciding where they can and can’t go?”


  1. What advice would you give to policy makers to enhance access to or enhance the impact of adult day/evening programs in your community?

Key Findings:

  • “More transportation funding; especially in rural areas. Including staff and money for upkeep/replacements of vehicles.”
  • “More sites so waitlists can ease.”
  • “Simplify process to gain info and apply.”
  •  “Invest in more dementia training program for your staff”
  • “Caregivers should be able to give feedback on the process from referral to integration in the program; more program spots and transportation.”
  • “Provide more funding for expansion of facilities, staff, services and operating hours. Simplify intake processes by not having only one access point.”
  • “Increase promotion and accessibility.”
  • “Improve the quality of care at the various sites. Maybe we need to template better programs for the other current locations. Waitlists are longer for the better sites.”
  • “Educate the public about the day programs. Work on removing the stigma.”
  • “Bring in equity in quality, fees, funding and increase access across all Adult Day Programs.”
  • “More research done to help prove the positive effects of day programs and their care partners. Anyone who works in day programs knows how they improve quality of life.”
  • “Provide Caregiver hands on training labs.” “Caregiver Labs! Yes, actually the Sinai Health System through the Reitman Centre offers caregiver training.”
  • “If Long Term Care was run like Adult Day, the world of people living with dementia and their families would be a better place.”
  • “It would be good if funding for Day Program fees were consistent across the LHINs.”
  • “Conversations between ministries are important, as dementia and Adult Day Programs extend beyond health. They also affect transportation, social affairs, finance etc.”
  • “Have more programs in each city. Provide more subsidized services to the seniors for the day program and transportation which will pick up clients who are stable regardless of their mental or physical limitations without having to have a person travel with them. Help with promoting and advertising local day programs and have a list of all day programs and refer clients to appropriate programs based on client’s needs, locations, service etc.”
  • “Put more funding into the day programs.  You get more “bang for your buck”.  It is a cheap service to deliver for the clients considering the alternative of hospital stays and long term care homes and it aids the caregiver in giving them a much deserved break.  The caregivers are able to cope more in their caregiving role and may not prematurely admit their family member to long term care.  If there was more funding offered for staffing, meals and program supplies the day programs could accommodate more clients and eliminate or dramatically decrease the waitlist.”
  • “Make adult day programs accessible once people enter Long Term Care. I found that this is truly when I needed them the most. They also make a great transition to and from Long Term Care. Why? Does anyone really think that Long Term Care offers a significant amount of activity to fill the world’s longest days?”
  • “Expand and consolidate services at adult day programs, increase service frequency, expand services to clients with responsive behaviours, establish day programs for low intensity clients and coordinate with senior centres as possible locations. Improve coordination between hospital discharge planners and CCAC case manager to avoid overlooking referrals. Expand overnight options and caregiver-training initiatives.”
  • “To offer more funding for transportation for people in rural areas. Also, more of the health care sector need awareness of these programs and refer people when the need is there. Often times, people come too late in the disease process and should be here earlier, so that the caregiver has rest sooner than later and that he/she can maintain hobbies, friendships, and their health better because once they are compromised, they are difficult to get back.”
  • “We would love to see a stronger connection to Geriatric Medicine, geriatric nurse practioner and memory clinic, so that they could come and observe when there are responsive behaviours and make medication changes as appropriate.”
  • “Stigma and lack of access to programs in a person’s own language are barriers.”
  • “More spaces and be available both during the week day, week evenings and on weekends.”
  • * “Further emphasis made on nursing staff being made available on site. Nurses do not need to be available full time (to assist with cost savings) but have a significant impact on health monitoring and can administer medications.”
  • * “Caregiver Support Groups during the day and in the evenings while their family member is attending the program.”
  • * Participants recommended including Food Banks, Meals on Wheels, Bereavement Services and Social Workers at  Adult Day Program locations in order to create a one stop shop with social services needed by older adults living with dementia and their family/care partners.”
  • * Participants recommended not using the word “dementia” when naming/branding adult day programs due to increased stigma and also since programs include both people living with dementia and those who are not living with a dementia.

* Comments added from Tuesday, July 25, 2017 Provincial Lived Experience Advisory Meeting.


Spend some time in an adult day program. The magic and impact is hard sometimes to describe; seeing the value might help policy makers understand the needs.”

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April-May 2017 Lived Experience Resource Exchange Summaries

April- May 2017 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for April and May 2017 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from one hundred and nineteen people from across all of South Eastern Ontario. One hundred and ten people were spouses, adult children, family or friends and nine people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in April and May 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.

April and May Resource Exchange – SE Ontario Lived Experience Network 

April and May 2017 SE Ontario Live Chat Summaries:

 April 2017 Live Chat Topic: In several of our SE Ontario lived experience advisory conversations both face to face and online the theme of technology has come up several times lately.

  1. In what ways would technology help/would have helped support you in your role as a care partner either in the home, caring from a distance or after moving to Long Term Care? Where are the gaps and what exists that is helping? Don’t be afraid to think outside the box.
  2. What are the barriers that exist to getting access to technology that would improve your experience as a caregiver?

Key Findings:

Ideas for apps and computer programs (existing and non-existing) that would improve people’s quality of life, recreational activites and communication:

  • “I would like to see Long Term Care use apps like “Promenade” or the use of Ipad to introduce finger painting, book reading etc. (Promenade is an IPAD app designed for family members and caregivers to use when visiting loved ones with dementia or related illnesses. It is a tool that can help stimulate conversation, encourage reminiscence, and make personal visits more engaging. It presents groups of photographs based on user selected topics and much more.)”
  • “I lived six hours away from my Dad. Staff would set him up on Skype so we could chat. It was the only way we could stay in regular face to face contact.”
  • “I Facetime with my husband and love it.”
  • “Skype and Facetime are such great ways for families to stay connected. Every Long Term Care Home or Retirement Home should use this.”
  • “The TV remote!! There has to be a better way. Why not make this Bluetooth so a remote can be accessed remotely?”
  • “My Dad could have had more independence if there had been a SIMPLE remote of the TV.”
  • “Assistive Devices for the blind has ten buttons on it. I met a lady whose grandson downloaded music to his IPOD then built a box on top with one button that said Granny’s Music. One button that turned it on and the same one to turn it off. I want that!”
  • “The television remote is a nightmare. Something that would make that easier would be helpful with simple pre-sets that can’t be jammed up or changed.”
  • “My mom’s phone had an app that held photos of the people she would like to call programmed in. All she had to do was push a button. That worked for a long time.”
  • “Sweet pea is an IPOD that is basically indestructible. I have had huge success with the sweet pea player. It turns off itself and you can load on the songs or books you want and pre-set the volume. Any button turns it on.”
  • “In regards to the TV, if X box can recognize your face when you enter a room, why not something that will search for some of my favourite TV shows?”
  • “The auto dialler is a reasonably priced gadget for the phone. It works simply by picking up the phone and it begins to dial a pre-programmed number, so no pictures or numbers or call ID is needed.”
  • “I would love to see noise elimination in Long Term Care like an app that recognized faces vs wrist alarms beeping at the LTC door as well as for chair and bed alarms. What if they just had alerts that went to cell phones staff carried –rather than bells that can trigger behaviours and agitation?”
  • “Alarms set off a chain reaction of residents yelling to shut off that noise. I agree – cell phone alerts or some kind of quiet alert would be so much better for everyone.”
  • “What about putting a barcode on items that normally go missing like false teeth, hearing aids, glasses etc. so they could be located and tracked and returned to the right person?”
  • “Tracking devices are also very helpful. My husband had a GPS for his belt.”
  • “I’ve read about google glasses. There is some promise for use for seniors with Alzheimer’s. It is worn like a pair of glasses but has GPS, gives facial recognition cues and immediate cues.”
  • “Aging in place technologies like video cameras and monitors could be useful. One family I know of uses this so the mother can run to the store nearby and still keep an eye on her husband at home.”
  • “Mechanical cleaning tools are useful too like automated Zumba vaccum cleaners, lawn mowers and I have a robot kitty litter cleaner for my parents.”
  • “Our LTC home has electronic pets both cats and dogs. They are really quite amazing. There are also babies that breathe and have a heartbeat for doll therapy.”
  • “My family uses IMO – it is similar to SKYPE but compatible with all types of phones.”
  • “Don’t forget YouTube – cute little puppy and funny children videos are great entertainment.”
  • “Intuitive gadgets could be part of LTC and Adult Day activity centres 24/7 that they can just walk up to and press a button and see what happens.”
  • “Emergency rooms should also have these kinds of activities to keep people calm and occupied. How nice it would have been to place a headset on my parents and have them entertained in emergency.”

Health Care Seems Lag Behind the Rest of the Culture Regarding the Use of Technology:

  • “It seems that health care professionals are very reluctant to communicate with care givers by technology. I realize that privacy is an issue but I wonder why it is so restrictive in this regard. My best experience was communicating with my husband’s specialist via email early on.”
  • “The lack of free and unlimited internet in some retirement homes, long term care homes and hospitals just seems crazy to me. It is as common place and useful as a phone line. People need it to communicate effectively in this day and age.”
  • “Wi-Fi in Long Term Care homes should be mandatory. You can get Wi-Fi in a MacDonald’s or hotel parking lot, older adults are getting more used to and dependent on the use of computers. It makes my life so much better that I can Face Time with my husband when I can’t get there. It also keeps him linked up with family who he would be completely cut off from without Skype and emails being sent of family pictures. This is an important gap.”
  • “With the accessibility of technology like Fit Bits, I am surprised there aren’t more of these kind of devices used to track patients to access their activity level and sleep patterns to gauge for pain or the need for med changes and monitor diabetes blood sugars by Bluetooth. Not that they should replace visits, but they would give doctors a better idea of their overall health over time.”

The use of Technology in elder care should be used with caution - Never replacing human interactions with technology based care:

  • “I love technology, but one has to be careful that they do not replace being there with “It was nice to chat with you today on Skype.”
  • “Video supervision is double sided coin, that’s for sure. I mean who wants to watch your parent pee in the sink? And who wants their kid (our spouse) spying on them? Think of the consent and capacity issues that would have to come to play!”
  • “Can you imagine watching your parent through a video monitor while in line at the grocery store knowing he was up to something and you are not able to act on it? That would be so stressful. Not to mention, you’d never experience a sense of respite and rest.”
  • “Access to technology comes with so many issues like privacy and consent.”
  • “When Long Term Care homes brings in technology like Wi-Fi it does create issues for them like who can help the person use it and who fixes it when it isn’t working right?”
  • “Technology exists to AID in the lives of people living with dementia – increasing their abilities and opportunities to communicate – but should NEVER replace human care and interactions.”

April Provincial Live Chat Summaries:


Our April 2017 Provincial Live (typed) Chat event on included ten lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury.) Participants were from Toronto, Perth, Mississauga, Brighton, Thessalon and London, Ontario. This month’s question came from a provincial team made up of Dr. Ken LeClair, Pam Hamilton and the North East BSO to help inform a project to unite physicians, clinicians and people with lived experience to improve collaborative care in geriatric health using the P.I.E.C.E.S. framework (a training format). To share as much information as possible with this team, this summary also includes the input of 24 South Eastern Ontario Lived Experience advisors from three live chat events in September 2014, October 2014 and June 2015 and one face to face advisory meeting that focused on their experiences receiving care from family physicians and their teams.


“When you consider your experiences with the different family physicians and their health care teams providing care, what approaches did they use that enabled you to be an active participant in the health care of yourself or your dependent? What strategies did they take to give you meaningful support that allowed you to be involved in decision making and care? Come prepared to share what worked – and what did not.”

Key Findings

Dignity: (Seeing and respecting the person as an individual with value, life history and purpose.)

  • “I find it hard telling the doctor what is really going on while sitting in the office with my Dad. It would be helpful if Dad was taken to another room to be weighed or something so that mom and I could share with is really going on (without hurting him).”
  • “We need senior friendly doctor’s offices.”
  •  “A good supportive doctor (and team) speaks to the loved one and sees them as a valued person, as one’s own father or mother. It is a good and supportive visit when the doctor is empathetic to the family who is grieving that their loved one is acting differently than they ever have or/and are slipping away.”
  • “I think there are some basic approaches for all aspects of treatment, whether it is for substance use or mental illness, but in the end the focus needs to be on THIS individual and what they need when exploring helping approaches.”
  • “Being treated with dignity and respect is so important. My husband is younger and he does not tolerate being talked “at” or like he is stupid.”
  • “Please look at me, “see” me when we are in a visit, not your laptop or computer screen.”
  • “When I finish speaking with my doctor, I feel like I’ve been really seen and understood – not simply processed. There is a relationship happening and that matters even on this small scale – especially when the health care situation is complicated.”
  • “I always hated when my husband would have to take memory/cognitive testing. It was so hard on him. He always dissolved into tears of humiliation and it would set him back for days.”
  • “When I look back on our journey, in all that time, I can’t recall anyone ever being asked how I was doing in the midst of my husband’s dementia.”

Consistency in the Care Journey: (This includes the need for care coordination and difficulty in navigating care, knowing who is caring for you and when.)

  • “Navigation is a big issue. I am very interested in helping others deal with their journey down the gravel train in the fog.”
  • “The part that is difficult is all the different appointments that the patient now has and has to get used to. “And then so and so’s office will call you,” and you we don’t know do we wait a week, two weeks, a month or six months for a call? What is appropriate?”
  • “Our doctor gave mom a pamphlet about the Alzheimer Society and suggested she call. This has been very helpful.” Only a very small number of participants were referred to the Alzheimer Society or Geriatric Psychiatry by their family doctors.
  • “It would be wonderful if the family health team would refer the person and families to the Alzheimer Society. We all know how complex the system is and how hard it is to find help and answers.”
  • “Things have improved drastically since we changed to a family doctor who takes a more collaborative approach. Now we have access to social work (for both us), referrals to geriatric psychiatry, there are programs for cooking, about diabetes and even walking groups. We can’t even begin to describe how this seemingly small change has impacted our everyday life and our overall anxiety. We used to feel adrift and now we feel supported and carried.”
  • “You are given your diagnosis and released to the wild!”

Clear Communication: (Listening and believing families, being proactive and collaborative and referring patient and family to other community supports or testing.)

  • “When my mother first developed some concerning signs, I consulted her family physician. He was of the opinion that it was her age and, as I recollect used the term senility.”
  • “We too reached out to my aunt’s family doctor. We had to be very persistent and ask for time to discuss our concerns. We just seemed to be dismissed initially. I understand the challenge, but what if the person doesn’t have anyone to advocate for them?”
  • “The hardest part was being taken seriously by the M.D. I finally got my mom to let me come with her and explain family concerns. Part of the problem is the amount of time given to patients. 15 minutes is just not enough time to discuss something like dementia or mental health.”
  • “For the most part the doctors have been supportive! My brother or I go in with my parents and communication is very good.”
  • “When I talked to our doctor, I brought the list of how to talk to your doctor, a resource that the Alzheimer’s Society created and then he really got it. I had to work hard to be heard.”
  • “I just don’t really know what is going on or how to partner. There have been lots of supports, but it just seems that when it comes to prescribing medicine, they simply tell us that this is to be expected.”
  • “When doctors can take their time and are thorough, that is so helpful.”
  • “My mother’s family physician (over 20 years) was rather condescending. When we suspected some form of dementia, he dismissed it. At the time my mother was in her late 80’s. She had a fall and there was a concussion and some small brain bleed. Over time, this doctor was not very helpful…quite often he would say, “Mae has had a nice good long life, just let her be.”
  • “Taking more time is key. A person with dementia or mental health issues can’t be rushed! Our doctor has even booked a “double” appointment so we had enough time – really listening and supporting both the patient and also the family.”
  • We had a hard time being heard…first the family doctor did not take me seriously. Then at the psychiatric ward there was no discussion of options initially – until I made a threatening pest of myself for months, I had done my homework and we had a change of doctors. The new doctor was first and foremost a good listener. She was not stuck in “this is how it’s done” mode, but was open to alternatives and good at accessing information and following up. She was very willing to work as a team. It takes a team and families/care partners must be part of that team for it work!”
  • “My doctor was absent from this process. Usually, he had a nice chat with my husband and that was it. I did not always feel listened to.”
  • “My doctor nailed it. He was honest yet caring and came right out and said “if your Dad ends up in hospital, these are the potential outcomes, have you thought about them? Let’s discuss them.”
  • “I am fortunate our family doctor and specialist always make time for me to speak to them privately about my frustrations and concerns. Not that there is a lot to offer, but they did refer me to CCAC and the Alzheimer Society.”
  • “I have found there is a fine line between doctors having a “consultation” with the patient with dementia/ mental illness and having the caregiver present. I resented being excluded from visits because my husband could pull off a pretty normal façade for a few minutes and was charming to boot. I wasn’t sure the doctor got a complete or accurate picture of our situation.”
  • “Let the caregiver be a quiet “witness” toa visit and then give them a few moments alone with the doctor afterwards – (time for them to share what they know and also to be cared for themselves) – a wise doctor realizes he is dealing with TWO patients, not just one.”
  • “I remember taking my Dad to an eye exam and hearing the doctor ask him repeatedly which is better one or two….What was the original question? He just couldn’t communicate that quickly or more than one question at a time.”


Sufficient Staffing and Services:

  • “Our family health team are really nice and care deeply about their patients, but the system isn’t keeping up with the need. I get the impression they want to do more but feel powerless because of the restraints they must work within.”
  • “The system is not able to keep up with what’s happening in the real world, their model isn’t keeping up.”
  • “I have a social worker who is a wonderful support, but it is only once a month and it is just not enough when you are coming unglued.”
  • “Sometimes I think the doctor needs to focus on the person living with dementia; but is unable to see the caregiver can be deteriorating in their health. Perhaps, they need to call in the caregiver to talk to them about their physical and mental health.”
  • “Caregivers and families need support, social work and counselling for just them. They are like the walking wounded, dealing with stress, grief and loss while often at the same time being forced to do things and make decisions that are outside their comfort, knowledge or skill levels. This is a real gap.”

Knowledge and Skill: (this refers to having knowledge about dementia, mental health, substance use and other cognitive impairments, but also a knowledge of resources and specialists that can help the patient and family/care partners.

  • “As well as having knowledge, skill and expertise about dementia, mental health and so on, we also need them to be able to know who to refer us to when it is outside their scope.”
  • “There has to be knowledge of the supports that exist for families in that region.”
  • “I think it would be helpful if family physicians had some training on geriatrics and mindfulness to pass along to caregivers.”
  •  “A good supportive visit is one where the doctor takes their time to really understand what is going on, gives helpful tips and helps you to understand what is happening. I didn’t know Dad’s illness would was going to take away his ability to handle his emotions; A good and supportive visit is when the doctor points out resources for the patient and family.”
  • “Are physicians really given a fair shake? I don’t believe they can be specialists in every area and sometimes we expect too much from them. However, they do need to have skills to recognize the caregiver is calling for help.”
  • “A collaborative approach is key: understanding how the illness is affecting the person and their family/caregivers and then reaching out and looking for other members to be part of a “care team” of knowledge and support.”
  • “Family doctors act as a gateway to care form other parts of the healthcare world. They have very important role.”
  • “From my experience, family doctors are trained for physical health –not mental health.”“I find so many people working with older adults have no real “dementia” training and it makes a huge difference. Everyone who works in health care…whether they are a janitor, an office administrator, a psw, nurse or doctor – they all need more training and knowledge.”


Care and Compassion:

  • “I am learning there is such a difference in knowing about something and the personal experience and emotions that go with it.”
  • “The problem with “having the background” is being told “well, you know this.” I am not my mother’s nurse. I am her daughter.”
  • “They also need to listen even if there aren’t concrete solutions. It helps to be heard!”
  • “You will never forget how that person made you feel.”
  • “What makes a good visit with an M.D….providing time to share the story, space and openness to uncover the real challenges or fears the patient is experiencing and also the family. Self-reflection by the physician to recognize their comfort level and limitations in supporting patient with dementia or other cognitive impairments takes a level of maturity.”
  • “Even when they can’t change the outcome – caring goes a really really long way! It makes a difference when health care providers are aware of the impact all of this has on family members.”


May 2017 South Eastern Ontario Live Chat Topic:

Our May 2017 SE Ontario Live Chat question comes from Providence Care Seniors Mental Health. Last month, all the hospital services of Providence Care moved under one roof into a new hospital building. This was an exciting but huge transition for the patients and residents on Providence Care Seniors Mental Health.

Reflecting on your lived experience, what was the real challenge for you, as a care partner, during the transitions in care of the person you were supporting?  From your perspective, what was the most challenging aspect of the transition for the person you supported?  For these challenges, what was the problem in your opinion?  What would have improved this transition for you and the person you supported?  If you or someone you know made the move to the new Providence Care Hospital, what was the experience (positive and negative)?

Key Findings:

Caregivers are Constantly Impacted by Change and Transitions in Matters Big and Small:

  • Live is full of transitions in caregiving. My husband is changing and transitioning every day.”
  • We went through a similar situation at the nursing home where Mom is now, but on a smaller scale. They built two new wings and moved my Mom to a new wing. It took forever for her to get used to where her room was.”
  • My mom went through a recent change in her retirement home. She just felt overwhelmed with the halls and how she was going to find her way.”
  • “Our transition has been ongoing for ten years. Before my brother passed away he lived with my Mom. He kept telling us that Mom was having problems but it was hard for the rest of us to see it. After my brother passed away, we got a real eye opener.”
  • “When the crisis hit we had to put services in place, set up direct payments for banking so bills would get paid and had a power of attorney papers put in place.”


Family Dynamics Play a Factor in the Success of a Transition:

  • “When my mother needed to go to a retirement home, she was fine with it, my Dad was not. He would say, “Why aren’t you coming home? This is costing so much,” and my mother would say, “That’s it, I should move home.” It was a very stressful transition.”
  • “When we moved my parents into a smaller home, I took a lot of flak from family for “making them move when there is nothing really wrong with Dad.”
  • “It is so tough for families when there are big changes happening especially when there are different opinions and passionate ones at that.”

Factors that Helped During Transitions:

  • “It isn’t something you can make happen, but if the person (and the family) can try to take a positive outlook it makes all the difference. Mom always amazed us. She turned to me and said, “Well, I guess this needs to happen and I am going to make the best of it. And that she did. She was on the resident’s council and was always the live of the group, participated in everything she could. Even now as the dementia progresses, she has doll therapy and just loves that baby to pieces. I believe she is happy, she is just in a different happy place and I am whoever she needs me to be on any given day.”
  • “Mom’s transition was tough at first. She had just lost so much, her home, her husband, her car and now her mind, but the staff, volunteers and other residents really cared for her and helped mom to settle over time.”
  • “For us consistent support was key – both at the Alzheimer Society and then later the LTC Home. That was what made it manageable at the end.”
  • “About four years into my mom’s time at LTC, she just changed. She started crying all the time begging us to take her home and became very aggressive to the other residents and staff. We couldn’t tell what triggered it or brought it on. It was the doll therapy that came in and turned things around. One of the staff’s daughters walked up to Mom and handed her the doll and the transformation that came over her face is something they still talk about. It was like a curtain had lifted and the life came back into her face and eyes.”
  • “Persistent and initiative staff can make a huge difference – patiently trying different things as well as changing medications.”
  • “I can’t say enough about the staff. They do seem to really try to get to the root of what is going on and they welcome any insights or thoughts the family has. We really do come together to try and figure things out.”
  •  “Clear communication and choices would be helpful for families when decisions are being made, it would be helpful if the path was more clearly laid for you.”
  • “I think there has to be more time given once a bed is assigned. When we took Mom’s bed it was like being swept up. In a matter of two days we took my Mom from the city she was born in and swooped her away to somewhere unknown. There was no time for her to say goodbye to all her friends, I am sure there are some that are still wondering what happened.”
  • “That rush through your transition (after you’ve waited and waited) is so tough to manage and get over. A little less rushed transition with clearer and consistent communication lines – that would help make transitions smoother.”


April- May 2017 Face to Face Advisory Conversation Summaries:

Barriers to Receiving Quality Care

  •  “What is happening in hospitals is really frightening. People are being sent home and rushed out the door before they are ready to be released and being sent home with older caregivers who are also sick and do not feel supported. There has to be something to bridge the gap between hospital and long term care – and home is often not that place.” *This was a reoccurring theme throughout April and May – several families called and emailed stories of being sent home from hospital before they felt prepared or equipped to manage. Lack of communication and a systems navigation person were the most common themes for this resource exchange.
  • “I know they want to keep people home longer, but given the need, there has to be more long term care homes and affordable retirement home options.”
  • “I am concerned that I see more and more activities that were handled by nurses in the past being replaced with non-registered staff. There is a reason they have all that training and things could be overlooked by people who don’t have the training to know what they should be watching for.”
  • “I think there needs to be more dementia training for family physicians about the disease and also the regional and local resources that exist for families.”
  • “I am happy to see the work that is happening to create the Dementia Strategy. So often services are reactive not preventative.”
  • “A person with dementia needs a care team approach a “circle of care” that works together. It needs to be an automatic response – this isn’t happening just yet.”
  • “Transportation in rural areas is a real issue. Also, the cost of transporting someone who is immobile is unaffordable – over $200.00 for a ride to the next town. Most people don’t have that kind of money.”
  • “Getting a doctor’s appointment is a real challenge. You call and call and just get a busy signal and are not allowed to leave a message.”
  • “Finding where to get care and knowing what services are out there that you qualify for is tough. It is so hard to get answers and I don’t know who to ask.”
  • * Participants reported that it is a very difficult process regarding Non-insured health benefits for First Nation people in the Territory, such as benefits for medications and dental work. One family reported their relative had Chrone’s disease. The medication was not working and the person’s health was deteriorating. There was medication available but it cost $1800.00 for one treatment. They had to fill out lots of complicated paper work and receive the assistance of a NHB (non-insured health benefits) Analyst (there is only one in the region). It took them 8 months to get the medication covered.”
  • *The Hearing Society was on strike at the time at the time of this conversation. People reported not being able to access translators and interpreters to go to appointments and to complete tax returns. In general, it is difficult to get an interpreter and you need to book 2 to 3 months ahead for an appointment and there is a fee.
  • “Inconsistency and unreliability has been something we have experienced with home care. People switching around their times, leaving early, arriving late and the staff changing all the time. I realize it isn’t totally the staff’s fault – but this is not the way to provide care to people who need consistency so very much to live well.”
  • “I wish I had known more about the disease and how to handle him earlier on. There are things I would have done differently if I had known what to do.”
  • “If only there was one “care” advocate or navigator or agency that was there for the person to help them walk through their “whole” health experience – not someone being pressured by an outside party or agenda – just someone who walked you through and advocated for what was best for you!”
  • “Our doctor didn’t see it, coordinators delayed and no one would listen for two whole years. Friends fell away and we didn’t know what to do. It was several years before we really got the help (and belief) that we needed. The hoops you have to jump through …”
  • “Family dynamics are definitely a factor. This being a second marriage there are so many issues that keep people from listening to each other and being supportive.”

Supports that Help:

  •  “The ambulance service here is really great. They are so helpful and always so such respect and care. They even shovelled out a long lane way for us.”
  • “We really enjoy the Memory Café offered by the Alzheimer Society with the brain boost, education and brain exercises.”
  • “We have found in order to get the care and consistency we need, we have hired private home care and they are wonderful. It is so much less stressful.”
  • “We are so pleased with the help we got from CCAC, physiotherapy, oxygen – everything was there and they followed up.”
  • “We had a wonderful cardiologist. He was so empathetic and there was great communication.”
  • “After a very difficult experience with a family physician, we were accepted at our local Community Health Centre and are so pleased with our experiences. They listen, explain things in a compassionate and clear manner, are pro-active booking your appointments, they have cooking classes and exercise programs. We can’t even begin to explain how much this has improved our lives.”
  • “I love that the Community Health Centre provides programs that address health care needs like diabetes, nutrition, etc.”
  • “We’ve been well looked after at a N.P. clinic.”
  • “Very pleased with our family health team. It is a one stop shop for help with diabetes, stroke and memory clinic. We feel very well taken care of.”
  • “Our experience with The Memory Clinic was very positive. They helped us to navigate and connected us with the Alzheimer Society which has been so valuable!”
  • “The Alzheimer Society has been a great support to us. We honestly don’t know where we would be right now without their counsel and support.”
  •  “Our experiences improved dramatically once my mother was connected with Health Links and received a Care Plan. The difference was night and day. Every person living with dementia should have a care coordinator working on their behalf.”
  • “The Alzheimer Society has been my life line. They have been the arms around me before and after the disease.”
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February - March 2017 Resource Exchange Summaries

February- March 2017 Resource Exchange Summaries


This Lived Experience Resource Exchange for February and March 2017 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from forty-one people from across all of South Eastern Ontario. Thirty-six people were spouses, adult children, family or friends and five people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in February and March 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.

February and March 2017 SE Ontario Live Chat Summaries:

TOPIC:  Both February and March’s SE Ontario Lived Experience Café topic comes from Providence Care Seniors Mental Health and focuses on how to help older adults living with dementia, mental health or substance use or other neurological disorders to be able experience as much independence and choices as possible.

One of the challenges that emerge for families and care partners when supporting someone is finding the balance between helping their spouse/parent/friend in a way that minimizes risk and frustration to that person and others and provides good quality care, while at the same time honouring the person’s need to still experience as much independence as they are capable of enjoying. Finding this balance can be so fluid and challenging.

1. How do care partners achieve this, what works?
2. What help/s would aid care partners in making these decisions together with the person?
3. What tips can you share from your lived experience for those who are struggling?

Key Themes:

Aging in Place Technologies Can Help People Live More Independently:

  • “Toronto area researchers across Canada are focusing on Aging-In-Place technology. I presented in December at the “Finding Your Way Forum: related to those at risk of walking and getting lost/wandering. I live 30 minutes from my parents and we actually have a robot litter machine for my dad’s cat and a Roomba vacuum cleaner too.”
  •  “For me, it’s not purely the technology…what’s more important is if the technology gets the job done to assist with caring and supporting the person living with dementia.”
  • “I have family in California remotely checking in on my dad to provide us respite and also a nurse friend who spends time with Dad online once in a while and she lives in Sudbury.”
  • “Technology tools are for everyone. There is a fear is some of the use of the tools ex. I use video camera monitoring, GPS devices and video communication to pop up and chat with my Dad and Mom right away.”
  • “My mom can check on her phone and check on Dad when she is walking in the neighbourhood stores, she texts family, takes videos and photos of the cat all the time and plays her memory games…but a lot of people fight with technology.”
  • “Some technology is not yet set up in a way that is simple and user friendly enough for the older generation.”

Tips for Care partner/ Family to Minimize Risk and Frustration:

  • “Caregivers need to take care of themselves and learn to spread the stress. So many caregivers try to do it all by themselves.”
  • “Apologize a lot! It Gives control back to the person feeling out of control. E.g. your person won't cooperate to go to see the Dr! Try Just saying "I am so sorry mom; I must have forgot to tell you about the Dr appt today,” instead of trying to convince them.”
  • “Use a third party to diffuse things. My role as a daughter could be ignored by mom, but conversations with private care staff had different outcomes.”
  • “Never speak to others in front of them without including them.”
  • “Ask if they want you present or not.”
  • “Tell them you will advocate for them and then reassure them that you are capable of and willing to handle things to straighten out a situation.”
  • “Remind LTC staff to get your person's opinion. When LTC staff asked me a question, I would ask them what did my mom say when they asked her?"
  • “Always have a plan in place. For example on an outing, Dad chooses no coat, take one along.”
  • “Reach out to people who are not family for support…I feel like my family is fading more and more away. They can’t handle seeing our (her) like that and feel guilty around me, so they avoid me. It can get lonely if you don’t reach out to others for support.

Offering Choices to Foster Independence and Respect:

  • “Keep everything simple and be supportive. Dad responds to the techniques you use with three year olds…which socks do you want to wear- red or blue?”
  • “Simplicity in life and communication works well in the dementia community.”
  • “I always provide my father with choices and keep it simple.”
  • “Everything…I always ask permission even for things like, can I help you take your coat off? Are your ready to go for a walk? Would it be ok if ...etc. When I forget to do that, I apologize.”
  • “I spoke with a couple whose daughter had moved in with them. One of them had early stages dementia and the other some physical issues. They were feeling totally run over by the daughter who they recognized was trying to help, but they felt like all their choices and independence were gone.”
  • “When they are in a facility, they have people all the time telling them what to do, I try and give them some of their choice and independence back.”
  • “It’s easy to see why and how it happens…because we are rushed and have to get things done. Honestly, sometimes it is just easier to do it ourselves.”
  • “Ask the person FIRST. Quit making decisions for them. Make it your rule to be respectful and always ask the person first. Even when I knew they couldn’t totally make a decision, I still had a conversation with them about it from trivial things like what to wear to the bank…showing respect without stress.”
  • “As Mom loses her speech, I appreciate that I can recognize her facial expressions and body movements.”
  • “It is difficult to use some verbal approaches when the person has lost a lot of the ability to be verbal and when there is a delay in getting response. It is hard to be patient. I usually say what I thought my husband was trying to say and then ask him if that is correct. It works pretty well.”
  • “Whenever possible, the home should make exceptions to the rules if they better suit the needs of the resident…especially if what they have to do is causing responsive behaviours. Knowing the person’s personal history, likes and dislikes and as much as possible accommodating them.”

Re-evaluating and Anticipating Their Changing Needs:

  • “I am learning I have to anticipate my mom’s changing needs. We just bought mom a wheel chair that is fitted for her but the design is more suited to laying back that sitting upright. She is going to need it, but it is not meeting her needs right now when she is still able to have more mobility.”
  • “We need to anticipate their changing needs and respond to them, that maybe are changing, each day is different.”
  • “I’m amazed to find my Dad is happy to colour…this is new…why should I have been surprised…his whole life he was doing figuring with numbers on a piece of paper with a pencil. He’s using that skill but in a different context.”

February Provincial Live Chat Summaries:


Our February 2017 Provincial Live (typed) Chat event on included twelve lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury) as well as the input of participants from Trenton, Thessalon, Kingston, Toronto, Brighton, Cloyne, Perth and Mississauga, Ontario.


Our topic came out of many discussions that have happened within the Provincial Lived Experience Network Advisory about families/ care partners need for practical education and training. What education and training do you feel is most helpful for family care partners and or people living with dementia, mental illness substance use and/or a neurological disorder?

  1. What education or training is available in your region?
  2. What types of education or training would have been or would be helpful if available?

Key Findings:

Overview of the Disease Training:

  • “It would have been nice to have access to “The Experts” on occasions rather than when in a rush during a de-brief in their office after an appointment. An overview of the disease, causes and what to expect etc.”

Strategies to Cope and How to Provide Care:

  • “Strategies for providing care at different stages of the disease would have been very helpful.”
  • “I need strategies for dealing with every day things like personal care, incontinence and shaving.”
  • “I think it would have helped the family at home if they knew how to have an inexpensive method to know their wandering loved one has left the house. Caregivers don’t sleep because they’re afraid the person will leave.”
  • “I would have liked education on Emergency Room Preparedness”
  • “Another education topic that new caregivers and experience as well struggle with is trying to be a super hero and doing it all themselves. Training to learn strategies on how to spread the stress and get other supports needs to be taught earlier.”
  • “Topics about inappropriate voiding, incontinence, learning about disrobing solutions and strategies/advice when initiating product use would be helpful.
  •  Participants discussed strategies to cope with inappropriate voiding in public.“Access to a continence nurse specialist would be helpful. They help many clients who have brain injuries and their caregivers to cope.”
  • “I stress about taking my father to appointments because of incontinence. I lose sleep over it!”
  • “Managing stress is so important and a challenge. The other part is the grieving that goes on with the ongoing and deepening dementia.”
  • “Music, Music, Music. This is very a very helpful tool for both the person and the caregiver.”

Practical Hands on Education on Methods of Approach and Communication:

  • “Any education is helpful. We need GPA – especially for families. PIECES training is geared more to professionals. If there was a “Cliff Notes” version of PIECES for family/ care partners that would be great.”
  • “Early on, the ability to learn about communication challenges not just verbally, but body language as well would is needed.”
  • “Training needs change as dementia progresses. I am now in the position where if I take my mom out, I am the one that needs to do the toileting, clean up after mishaps, safe transfer from vehicle to the side walk and then into the wheelchair.”
  • “I do feel there needs to be sort of a step-approach to training and info, it gets so overwhelming sorting out what you really need to know now as opposed to down the road.”
  • “There really should be an entire day of training just for communication. Even more difficult if a person has Aphasia.”
  • “Communicating with my husband is my biggest challenge now along with communication delays.”
  • “You really won’t find this as a training tool, but I’m a big fan of improvisation (“improv”) classes to teach the basics of communication with someone with dementia. Improv (role playing) is learning the skills to accept the other side and where the other person is at. I believe every caregiver should take a couple courses in basic improv.”
  • “Things like Positive Approach to Care (Teepa Snow) training and the Validation approach are other successful training methods that allow people the opportunity to act out and role play while learning.”
  • “Behavioural training is really hard to come by here. At present, if a resident in LTC needs a plan for behavioural modification they are sent to North Bay for assessment and have a care plan developed. Extremely limited for clients still at home.”
  • “Training in communication is so needed when your spouse or parent is in LTC. You might know how to communicate with them, but now you are in a room of other residents, many living with dementia. How do you balance the conversation and not upset anyone in the room?”
  • “It would be so wonderful if caregivers did not have to desperately seek out solutions late at night on the computer but could “feel” supported by having these trainings available.”

A  User- Friendly Centralized Online Information Space and Avoiding Duplication of Services and Strategies:

  • “Every time I ask my kids how to do something they ask if I looked up the answer on You Tube. It is probably a generational thing, but maybe some of these excellent resources could be put into You Tube in some sort of organized manner. That way you could access the information when you need it (just in time training).
  • “I must admit that I am so overloaded with information at times that I only focus on my immediate needs not what I may need next month or next year.”
  • “There is so much information online. Sometimes it’s hard to sort through everything.”
  • “There is almost TOO MUCH information. I become overwhelmed and over stimulated by the Internet. I can’t even remember what I was searching for.”

“I see the value of a national centralized website with links to training/resources and discussion boards for various topics/stakeholders/individuals.”

  • “There also seems to be a lot of duplication of effort by various groups. An example is each province developing their own strategy for dealing with dementia while the Federal government does the same thing?”
  • Maybe some of that “duplication effort” could be redirected to develop a centralized repository of training materials.”

 ANSWERS TO: What education or training is available in your region?

  • “My Alzheimer Society support group fleshed out the introductory session on clinical aspects of the disease.”
  • “I found at first the support group for the adult day program to be very helpful. They brought in speakers. More recently, The Shifting Focus document developed by the Alzheimer Society has been very helpful.”
  • “The Alzheimer Society here is beginning to do some practical training for people who have their loved ones living at home.”
  • “It’s not training in our region, but an interesting initiative that is helping residents and their family/care partners: Our LTC home has created a relaxation room. It is inspiring to see how it works. The lights and glow balls are mesmerizing.”
  • “On the topic of glow balls, we have heard some really great success stories about Snoezelen Rooms in Long Term Care Homes.”
  • “These rooms have been around for a while as therapy for Autism.”
  • “We don’t have a room but there is a cart to take to the residents and they can go to the unit quiet area - modify and adapt.”
  • “Our local Alzheimer Society has a well-stocked library or resources available on loan. I also found the site particularly good. It has lots of information, easy to navigate and has discussion forums.”
  • “ has excellent resources and webinars. I have quite the library of collected from there.”
  • “We have talked in our family council group about having a series of information sessions (1 hour for 4 weeks) to help new families understand LTC. Perhaps this might be a working model for dementia counselling.”
  • “We have been pretty lucky in our area with a great Community Care organization. They occasionally do information sessions.”
  • Sometimes you just need a little encouragement to think outside the box when looking for solutions. I always find that easier in a group setting (support group).”
  • “The Ontario Association of Residents Council has webinars for residents.”

ANSWERS TO: What types of education or training would have been or would be helpful if available?

  • “Strategies for dealing with the symptoms of dementia.”
  • “Grieving and the ongoing having to be ‘up’.”
  • “The hardest part was knowing where the journey was going. My mom just lost so much.”
  • “What to expect when moving into Long Term Care. I wish I had known that I could go on admittance day and singed the forms and provided documents then and my mother could have arrived a day or two later. As it was she had nothing of her own and sat there in an uncomfortable chair – wondering what was happening.”
  • “I would like to have had more information on what “pain” looks like or how dementia presents itself for pain.”
  • “I understand there are pain management tool kits… Myself I cannot manage a rainy day without a microwaveable bean bag but in LTC people need a physician and physio order for someone to apply a warm bean bag.” “Pain management education would be helpful for sure.”
  • “It would be great if there was a resource person to contact with questions arising from articles read on reputable internet websites, especially in regard to new thinking on disease progression.”

February- March 2017 Face to Face Advisory Conversation Summaries:

Barriers Exist to Accessing Care for those Living with Dementia and Also Mental Health and Addiction:

  •  “Older adults living with dementia, mental health and addictions (along with their families and care partners still feel that they are “lost in the system” and receiving “mixed messages.” “I used to work for CCAC and even still it was hell on wheels trying to get help. It is sad that you have to fight so hard for what you need.”
  • “There is huge variability in what services exist and how they are accessed, even within the same region.”
  • Privacy legislation limits friends and family’s ability to be involved in the care of their loved ones. Some health care providers will still provide the opportunity for them to share by listening to their feedback without breaching the privacy of the person; others will not listen at all.
  • There are several issues with the mental health act.
  • Health care providers not “seeing or acting upon” symptoms of dementia, rather dismissing it, “Oh he’s just getting older, oh he is just dehydrated.” (Fortunately, there were also examples where primary care providers and specialists were quick to act and very collaborative and proactive in their approach.)
  • In cases of persons living with early onset dementia, there are many age restrictions that keep them from qualifying for services and supports. It was also noted that “it is very difficult for these people to work, but they are young, physically healthy and need opportunities to keep them busy, active and purposeful. There is a real shortage of opportunities for them to volunteer in a supportive environment.”
  • “Communication is always and likely will always be a huge gap. Everyone in that health care circle needs to be talking clearly with the person and their family and with each other.”
  • There are significant lack of social activities and support groups for those who are younger and living with dementia. “The younger folks are so isolated and need socialization, healthy lifestyle activities and exercise, especially after friends fall away.”
  • “It is so hard for me to advocate for my husband. I am not an aggressive person and I feel like when I approach staff they see me as a problem. I also don’t want there to be retaliation against my husband. It might sound silly – but it is a real concern for me.”
  • “Respite is a huge barrier. I can get respite if something is wrong with him, but not when I am sick, when I had knee surgery or I am unable to take care of him. What is with that? I feel like a prisoner in my home with a Velcro person attached to me.”
  • “I broke my hand and had to wear a cast for four weeks. I couldn’t help my husband dress completely. He had to wear compression socks and I couldn’t get them on him and there was no respite or home care for me. If he had broken his hand we would have got help. It just doesn’t make any sense. Keeping them home means caring for the caregiver too.”

Supports that Help:

  •  “There were some real gems in our health care story too, people who really cared and even phoned me at home to see if I was doing ok even after he was admitted to long term care. That made a huge difference.”
  • “The Alzheimer Society is something I wouldn’t want to be without. They were with me through the whole thing like an anchor and even now while he is gone, they haven’t “closed my file” they are still here walking me through my grief and helping me to give back to others who are just beginning.”
  • “Adult Day has been our saviour. He is happy and they love him!”
  • “Our family health team is helping. There is better communication a social worker and they are supportive and share where to find information and services.”
  • “Our long term care home goes above and beyond. I couldn’t be happier. The staff knows your name; they care about you and the residents and really get them involved. The home was not my first choice because it is quite a drive for me, but I am not going to ask to have her moved because I see what great care she gets there and that she is happy.”

Promoting Dignity and Independence Ahead of Safety Whenever Possible:

  • “You always hear “safety first” but I don’t agree. It should be safety first when it HAS to be, but dignity, independence and allowing the person to live as much like “themselves” should come first. Health and safety should come after that or we will just start “processing” people to get them through the day.”
  • More discussions surfaced around the manner and process in which people lost their driver’s license. “Whether this is done with kindness is very important. When it is not, it sets the family up for future conflict.”
  • “One of my biggest frustrations is that it is not a greater priority to keep people from becoming incontinent. Seniors having to wait to use the washroom for 15 minutes or more and the response being …it’s ok because they have a diaper on anyways. It is not ok! Losing the ability to go to the washroom on your own is a major blow to dignity and independence.” The conversation also included discussion around the choice to put long term care home residents in hip protectors. Often residents are unable to remove themselves and now require assistance, even though they would otherwise be perfectly capable of toileting themselves independently. Which is more important here their safety (breaking a hip from falling) or prolonging their dignity and self-sufficiency as long as possible?
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December 2016- January 2017 Resource Exchange Summaries

Summaries Resource Exchange:


This Lived Experience Resource Exchange for December 2016 and January 2017 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from thirty-six people from across all of South Eastern Ontario. Thirty-four people were spouses, adult children, family or friends and two people were older adults living with a dementia, mental health or other neurological disorders. 


Advisory conversations in December 2016 and January 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.

December 2016 –January 2017 Resource Exchange – SE Ontario Lived Experience Network 

December 2016 SE Ontario Live Chat Summaries:

TOPIC: Come prepared to share some of your personal observations from where you are at in your journey as a care partner/ someone living with dementia, mental health, substance use or other cognitive impairment. Where are the gaps? What's working well and where do you need more support? We also welcome you to share some of the lessons you've learned along the way that have made things easier

Key Themes:

Sufficient Peer to Peer and Group Support

  • “I am a member of a male care givers group. We meet once a month and it’s been very helpful in both providing information as wells support. Unfortunately we haven't found a similar support group for my wife (living in early stages) yet.”
  • “Unfortunately, I did not find the Alzheimer Society of great help to me since my husband was young and I was working full time. Many of the programs were during the day. I did find  the one group Women who Care which meets monthly in the evening did help for sharing and getting info.”
  • “Grief is truly an individual thing, but we all feel it and will have overlapping feelings. I find talking to people who know the situation helps me.”
  • “Talking to people and sharing the burden. I guess that is partly why we are here tonight.”
  • “I went to a support group for widows when my husband went into LTC and it was ok but did not really address the twilight zone that we have to deal with dealing with dementia.”
  • “I think there are some important differences if one is young and struck with dementia. One is children are much younger. The spouse may need to continue to work. Financial impact may be different. The mobility of younger residents is greater. My husband walked until the day he died. The activities and music should include more current things - ie computer games and current pop music. This is just some things that should be considered when dealing with the whole person and supporting them and their families.”
  • The information you learn in support groups is excellent and it’s nice to hear from someone who has been down the road.”
  • “Some of the programs cannot translate into younger people living with dementia. We need to adapt knowledge but also the programs need to shift as well.”

Coping with Grief and Loss:

  • “I would say there is a definite gap in the Alzheimer Society for offering grief counseling, coping strategies etc.”
  • “Everyone in the caregiver’s group I attended are all trying to deal with this basically alone.”
  • “For grief, I have cried and cried when talking to my sister but I also do exercise with a group most days, try to do things to get my mind off thinking. I write about funny and sad situation my husband and I have experienced. It is very individual.”
  • “I am referring to the little losses along the way. We used to go out to dinner Friday night. We used to go shopping; we used to go to bingo now we don't do anything anymore. There is a word for this kind of slow grief, but I forgot what it was called.”
  • “It is a gradual loss while the person is still living - very hard. I share this with you.”
  • “Definitely. Everyday something else goes. Sometimes it is a surprise what my husband had loss and other times I could see it gradually fading away.”
  • “Sadness is unfortunately a big part of this disease. We lose too much too quickly, then it is there and you savour the moment they are somewhat themselves.”
  • “We try to focus on the things we can still do instead of the ones we can't do. Also exercise and maintaining your social networks helps.”
  • “I tried to get some grief counselling... but it is not available until after mom passes away. I won't need it then.”
  • “I needed the help while my husband was alive almost more than when he passed.”
  • “I was able to get counselling through the hospice. Try calling one, they even came to visit in house.”

Navigation and Consistent Access:

  • “I frequently hear about problems "getting" a diagnosis. Our journey started in Kingston then to Ottawa and then to Toronto. It was misdiagnosed as vascular dementia in Ottawa and the Kingston contact just disappeared (off sick I hear) and no one at the office got back to us. The G.P.'s don’t even seem to know where to turn sometimes”
  • “It’s too bad there wasn't a centre for diagnosis and treatment attached to one of the health centres where everyone could be channeled.”
  • “Not getting back to people is a real gap. I am hearing that all the time from friends. People get “seen: and then often feel like they dropped off the earth after that.”
  • “That is how I feel about the neurologist, we have not seen him in four years.”
  • “It took several years for my husband to be diagnosed as he was young and they had to rule out all sorts of other things.”
  • “You have to be the squeaky wheel just at a time when you don’t have the energy for it. Having to make repeated follow up phone calls because they don’t call back or have the wrong info/outdated phone numbers.”
  • “Our diagnosis spanned a period of about two or three years. We changed G.P.’s because the original one who had been our GP for thirty years didn’t seem that interested.”
  • “Our neurologist is very good on follow up. We have been included in three studies and she initiates follow up assessments every six months.”
  • “I would like to have had more follow up and research done on my husband (but didn’t know how to get that) because his condition is so out of the blue.”
  • “One thing that struck me as odd is that Ontario is just starting to develop a dementia strategy but Quebec and BC already have one. I understand the federal government announced that they were going to develop one as well. Wouldn’t it be nice if we as Canadians just have one strategy and then get on with providing assistance to those dealing with this disease.”

Education and Supports for Staff:

  • “I am learning that more education for LTC is necessary as well. PSW’s and nurses don’t always know how to handle the behaviour of dementia patients.”
  • “In every area of work PSW’s and nurses lack dementia training…hospitals and when they go into people’s homes.”
  • “PSW’s need better pay too. How do you build up a competent and educated work force if you don’t give them adequate pay or hours. This is a real gap.”
  • “In the hospital one staff told me since my wife wasn’t on medication for dementia she doesn’t have it!”
  • “It needs to be a priority to get these people training…and enough support.”
  • “Hearing aids are my pet peeve; I was told maybe they should only be in when family visits. Very few staff members know how to ensure they work, insert properly or change the battery.”
  • “More education = less medication I think.”
  • “I think the Ministry sets up LTC Homes to fail sometimes – imposing unrealistic expectations with not nearly enough staffing or education. The same goes for PSW’s in the home and hospitals. Then when they fail, people point blame at them as being the problem when really the problem starts at the top and trickles down.”
  • “Our Family Council is constantly advocating administration about staffing but they are above the ministry standard!”
  • “Perhaps the Ministry Standards need to change!”

Supports that Work Well:

  • For me, my social worker, when I had her…was a huge source of support. I can still call her and she is always knowledgeable, helpful and supportive. Every caregiver needs to be assigned one.”
  • “For me it is some of the really great staff at our LTC home. They really care about my Mom and me too. They take that extra time. More of them are like that than not – so I am very fortunate.”
  • “The LTC people are great and have been wonderful. I cannot count them out.”
  • “My support groups with the Alzheimer Society have supported me. They will accept me when I am available.”
  • “I agree the Alzheimer Society is great!”
  • “The Council on Aging has been a huge support to me. They do this with peer support volunteers, the elder abuse hotline, provide support and information for seniors whose financial, emotional and/or physical safety may be compromised.”

December Provincial Live Chat Summaries:

The December 14, 2016 Provincial Live (typed) Chat, involved 13 participants from Sudbury, Timmins, Kingston, Belleville, Toronto, Thessalon, Perth, Cloyne, Brighton and Waterloo, Ontario on

 In this session, participants were invited to share their input on the following topic:

December’s Live Chat Question:

What are the ways that you create meaningful engagement around the holidays when supporting someone living with dementia or mental illness?

  1. How have your holiday traditions changed/been modified to meet current needs?
  2. What are some practical tips and strategies that you’ve found to be successful?
  3. What are some of your key lessons learned and most valued supports during this time?

Key Findings:

  1. How have your holiday traditions changed/been modified to meet current needs?

Simplify: Participants recommend various ways they had adapted previous activities like shopping, cooking, decorating and gift buying in order to keep things more simple and manageable.

  • “It helps to keep things simple as those with dementia are easily overwhelmed and stressed.”
  • “I have to be cautious not to fit too many activities into the day to keep the anxiety level at a manageable level.”
  •  “In the past I have put a small 1/2 Christmas tree on the wall.”
  • “Adapting our visiting helped too. Everyone coming at once was too chaotic, so the tradition was adapted and I bring the grandchildren on a different day.”
  • “Simple things like singing a song or a hymn was our way of connecting.”
  • “We have gone to “cash gifts” this year. It is not as exciting but it sure is less stressful and I think the kids and grandkids appreciate the cash. That way they can enjoy the Boxing Day Sales.”
  • I agree – cash as appreciated gifts. It is also really good for my blood pressure and for not having to make returns or exchanges.”
  • Order Pizza and Sushi if that’s what you think you can handle. What laws says we have to have turkey or ham?”
  • “I hear from a lot of people that they just order Swiss Chalet, get their meal catered or ask the family to do potluck. Keeping it simple is less stress for already stressed out people.”
  • “Embrace little mementos like a special ornament on the Christmas tree to honour the person we love when they can’t be present. These bring back warm memories we can cherish.”

Adjusting traditions- so still enjoyable but more manageable:

  •  “This is the first year we are shifting our Xmas eve and Xmas day activities to our daughter’s house. Fortunately, we all live in the same city so travel’s not an issue. It should be much less chaotic and if we need a break we can come back to our house.”
  • Our family stopped giving gifts to each other a long time ago. If you’re coming for dinner you bring a wrapped gift of predetermined amount and then we play a draw game.”
  • At our house the best git of all is time with the family (seven grand kids ages 6 to 14).”
  • “One thing we did was set a limit of $5.00 plus tax for presents. They are really funny and pointed but easy for everyone to afford. Great to take my mom in the store and turn her loose. She loves the small jokes.”
  • “When it comes to gifts, the gesture is the important things – a picture and picture frame with a label (without the glass) or a small ornament to hang on the door.”
  • “We have a group of ten who go out for dinner every New Year’s eve. A couple have mobility issues, so this year we are going to someone’s house and ordering pizza. Nothing fancy but I think it will be more fun.”
  • “Another suggestion was making Memory Boxes and changing them from time to time and the season.”… “I just found a link about memory boxes:
  • “The long term care home has a Xmas market and everyone loves the shopping experience! In fact we find the shopping day to be time well spent together vs a Xmas dinner.”
  •  “This year our home did a “light the night” with hot chocolate and cookies and singing, then 27:30 the lights in the backyard were switched on.”
  • “In later stages be cautious with decorating and making sure the person feel disoriented in their environment.”
  • “Last year, I left for the nursing home first thing Christmas morning, after my grandchildren had opened their gifts. I arrived just after Mom had breakfast, we spent the morning laughing sipping mimosa and I curled my Mom’s hair. She got all dressed up in her holiday attire ready for Santa to pay a visit to the nursing home. Residents, staff and family members gathered in the large activity room, the fireplace channel was set on the t.v. and presents spilled out from underneath the tree. Santa and his elves handed out gifts to each and every resident and then Santa took the time to take individual photos with all who wanted to participate. I sent the photo of Mom with Santa to all my Siblings and all her Siblings wishing everyone a Merry Christmas from Mom. That memory will stay with me forever, it is making me smile now as I type it, even a year later.”
  • “It only takes two times to change a tradition.”
  • “Once Mom moved here to LTC I would bring her to my place for late breakfast & our gift exchange. Then we would go out to Christmas dinner with all my in-laws. My mother in law was a PSW who had worked in LTC. She & Mom were friends. It would depend on how tired Mom was how long she stayed. Each year we gave the great nieces & nephews a piñata - they decided to have at before opening family gifts because she might get tired. Mom really enjoyed watching & laughing with them.”

Knowing the person and adapting to their specific needs:

  • “One story that was shared cautioned to decorate and un-decorate slowly. She shared that her parent woke one morning and the room was cleared of the decorations and she became frantic and disoriented. It took a long time to calm her down…lesson learned by the family involved.”
  • “Dad is now trying to eat anything he wants. I cannot give him wrapped candy because he doesn't know to remove wrapping.”
  • “Holiday traditions are ever changing. It is hard, really hard, to set aside what I want to be doing with my Mom in my heart and what is best for her. Mom has been in the nursing home for 6 years now. I always took her Christmas shopping, she came to the house to help with Christmas baking, she came and stayed overnight for 4 or 5 days during the holidays.  As the dementia progressed, coming out for Christmas baking was the first thing that had to be changed, it became too overwhelming. The overnight visits shortened. Last year we had to change to a day visit for supper only. This Christmas will be the biggest and most difficult change as I do not think Christmas dinner at my house is even possible.”
  • “Yes, our traditions did change and we had to accept the stages where my mother was. This involved changing from bringing to my home and to going to see her on Christmas Day and giving her presents there. This was tough to accept but part of the process of letting go.”
  • “I think knowing what our loved one enjoys is key. In our case it was babies and young children. Our mother didn’t seem to know who her great grandchildren were, but concentrated on them with obvious pleasure.”
  • “Help prepare visitors (especially children) ahead of time for what they may encounter- to adjust their expectations a little.”
  • “Try not to say, “Do you remember when…” This can frustrate the person living with dementia when we are trying to reminisce. Try to rephrase that.”

Guilt, Grief, Loss and Isolation:

  • When we finally decided not to continue bringing Mom to our home, I felt so guilty! We realized we weren’t doing it for her benefit anymore, but our own needs and wishes. We had to adapt for her – but I still feel guilty about that every holiday.”
  • “Guilt is the biggest thing to deal with sometimes.”
  • “Holidays tend to increase the guilt, the grief and the loss as we reminisce more about the way things were.”
  • “The guilt of not including her in everything we used to do as our family traditions is hard to control.”
  • “I struggle with doing things without my husband, but am realizing I need that sometimes. Dementia is very isolating. Even when people want to help they have trouble understanding. Finding meaningful things to do with our loved ones is an evolving challenge.”


  1. What are some practical tips and strategies that you’ve found to be successful?

Leaning on others for help:

  • “One family member shared that they book extra private care visitors to come and spend time with their parent in LTC when away travelling. This way they can know they are not all alone.”
  • “Early in Mom's journey with us my brother & I took turns hosting Mom for Christmas & New Year’s.”
  • “I have a strong support system with my husband and children. The second great support is the nursing home, they go above and beyond to accommodate our family luncheons, brunches and suppers.”

Staying focused on the present moment:

  • “I think it's about bringing the focus to this moment, this hour, this day.....and try not to want more than your loved one can handle. You/we are all dealing with the hardest job...caregiving for a loved one. Feelings really come into play.”
  • “My key lesson is trying to find a proper balance between what my heart wants and what is best for Mom at this stage of her dementia.”
  • “Things seem to always be changing. I think I just need to relax and try not to control the outcomes. They are SO out of my control.”
  1. What are some of your key lessons learned and most valued supports during this time?

Strategies to Looking after You Suggested were:

  • “Here are a few strategies for looking after “me” 1. Keep up exercise routine, 2. Make sure I get enough sleep, 3. Eat right and watch the extras this time of year. 4. Make time for family and friends and 5. Get out and enjoy the outdoors.”
  • “I find talking about it with people who understand and have been there (or are there) is very therapeutic, especially when extended family doesn’t seem to be on the same page.”
  • “I found great support from my sister, my husband and my family.”
  • “I live in a small town but with lots of churches. They seem to be able to ensure that every resident has time with clergy and LOTS of singing. The kids from daycare & public school are in. Charitable Association pays for a school bus to bring the high school choir for a visit -really good because most residents will have at least one grand or great grandchild in each group. Volunteers keep treats like cookies available for "tea" and of course we get to send kids home well sugared! (from someone who lives in LTC).
  • “One coping strategy is to dig for humour to be found in a situation. IT can involve very deep digging – but nuggets can be found.”
  • “If it’s not fun, don’t do it…It if has to be done, make it fun.”


January 2017 SE Ontario Live Chat Summaries:

January’s live chat came out of several of our face to face and online conversations, concerns have been raised about the manner in which assessments are conducted – whether it is for driving, cognitive or capacity tests, eligibility for services or Long Term Care take placement. Several of you have offered suggestions for how you feel things could be more consistent, compassionate and more comprehensive.

Come prepared to offer your observations about

  1.  What elements make an assessment respectful and supportive to the person (and family/care partner) as well as thorough and accurate?
  2. What are some practical suggestions for how assessments could be done differently?
  3. What are your thoughts on the process in which a person loses (and is told) they will be losing their driver’s license?

Key Findings:

Questions of Capacity:

  • “Long term care homes are referring to the attorney for personal care for making decisions without assessing the resident. An attorney for personal care is ONLY to make decisions on someone’s behalf based on the fact that they cannot make the decision themselves.”
  • “I don’t think the person should be treated as if they can’t make any decisions for themselves. Maybe they still can. My theory is that an individual must be allowed to make choices whenever they can and you would be surprised how many decisions they are capable of during the process.”

The Effectiveness of Screening Tools:

  • "While the MOCA (spelling?) is a great screening tool, it doesn’t really enough information other that “there is a problem” The next step should be to a more comprehensive cognitive testing, scans and a questionnaire for the caregiver. In our case there was a disconnect between the screening and the assessment.”
  • “I recall after one assessment regarding capacity for Long Term Care, wanting to ask them if they had remembered to ask her if she’d set the kitchen on fire recently. The family wasn’t involved in the conversation at all.”
  • “Because of “good days”, when the dementia takes a rest, some are able to ace the assessments. If tested the same the next day the results would be different.”
  • The assessments need some assessing.”
  • “We never had reassessments that went any further than the clock. My husband wouldn’t do the clock. He refused. I don’t blame him either.”
  • “Some are so irrelevant for the person. For example, copying drawings-my mother NEVER drew anything in her life...not even a smiley face on a note, so to have her try and copy 3D shapes was not a good test of her cognitive functioning. Just part of my angst. I WAS a psychometrist in my past life, so I know how limiting the testing can be, but that, to me, is an extremely limiting test.”
  • “My mother had advanced dementia, i.e. reasoning, hygiene, eating, speaking, but she could draw that clock long after she was moved to a secure dementia unit!”
  • “My mom couldn’t draw worth beans before the tests so her issues should be more rated on memory, daily functioning and language- not 3D. She couldn’t draw the clock but she could do the numbers backwards – go figure?”
  • “I know the clock is #1 for that generation telling time, but not the new generation of digital. Many youth cannot use an analogue clock and understand the pattern of numbers. I think it is certainly an antiquated (dated) test.”
  • “I'm no expert but I think the clock and diagrams in the MOCA test measure visual spacial function which resides in a specific area of the brain. If they do well in that section of the test it just means that part of the brain isn't impacted but other areas my be and that will show up in other questions. Again I think it’s a screening test not an assessment tool (which would be much more comprehensive).”
  • “The clock test helps identify some very specific areas of impairment; it is just a screening test that tells us a lot. However, I agree it will be antiquated for the next generation. I have also seen a screening test of “making change” that might replace the clock test – (although that is also a dying skill) – alternatives could be found.”
  • “I agree the skill-set testing is important but someone needs to come up with a more modern version.”

Support and Education Following a Diagnoses:

  • “Screening should be followed with a diagnosis and then comprehensive education that includes what the diagnosis means, what to expect as it progresses and typical time lines for that progression.”
  • “All I ever really knew was Mom had dementia. No idea how they came to this diagnosis, no real idea of the type of dementia, my sister thinks she heard somewhere along the line it was vascular dementia, but that is it. Early on, the nursing home was under a whole different opinion of why Mom was there. They did not recognize the dementia, thought she was terminally ill because of the lung cancer surgery she had.”
  • “My wife didn’t score well on visual spacial section or executive function but scores well in other areas. When the neurologist explained the results of the scans and the rationale for her diagnoses it all made sense – but I think our experience may have been an exception based on the other stories I have heard.”

Consistency in Testing and Services Offered:

  • “In our case, we had an Occupational Therapist do the testing that would determine driving eligibility. It was up to use to decide what to do with that assessment.”
  • “The screening will identify dementia, but doesn’t identify the type, proper medications or help family understand what they are facing. A central assessment and education centre seems intuitively to make sense and everyone in the medical profession should know where it is and how to access them through a referral.”
  • “I don’t get why some people see a neurologist, others a gerontologist, others an Occupational Therapist and others nothing. Things should be the same for everyone. The system should be doing a good job for everyone!”
  • “No one seems to get the same tests/ assessments done. It is so random.”
  • “I think these different approaches just demonstrate how disjointed the assessment, diagnosis and treatment of these diseases (under the dementia umbrella) are.”

The Attributes of a Good Assessment – Personal, Respectful, Compassionate and Taking time for Dialogue and Include the Input of Family and/or Care Partners:

  • “Our family doctor did a reflect test at the same time as the mini memory test to determine my husband’s ability to drive. He made it very personal for him by saying, “if your granddaughter stepped off the curb in front of you, you would not be able to stop before you hit her.”
  • “My wife has been in three research projects that require doing testing all over again and it is very draining on her. I’m not sure she’d volunteer again knowing that she had to go through this. The assessors did the best they could. I’m not sure how you could make it easier.”
  • “Family and caregivers have to be included. First they interviewed my wife and I together and then separately which was good. Once the patient encounters problems doing that section of the test, the assessor should move on more quickly rather than dwelling on that section.”
  • “My relative was showing signs of dementia. I called her family doctor and expressed our concerns – especially with her driving. Because I was not listed as next of kin, they said they could not act on my concerns. We let it go because we didn’t want her to become suspicious of us. As we suspected, shortly after she was at fault in a car accident and totaled her car. Fortunately, she did not injure anyone else and only sustained minor injuries.”
  • “We meet with our neurologist every six months. At each meeting I am asked to complete separately what I would describe as a “functional assessment” of my wife. It is quite interesting that I have noticed progression of the disease based on my responses. Typical questions revolve around daily functioning e.g. use of the phone, ability to cook etc.”
  • “My answers and my wife’s would be very different on the “functional assessment” hence the need to do them separately and then they can compare and interpret the results. I am finding as the disease progresses her answers are less accurate so independent validation by the care giver is imperative.”
  • “Wow, shouldn’t there be a “functional assessment” tied to every kind of test that affects a person’s independence and future?”
  • “When it comes to the perception test, somehow an interview with family is needed to see the person’s prior interests or strengths to see which is relevant.”
  • “Any good assessment requires such wisdom and compassion from everyone involved.”
  • “When being assessed for LTC, I found it difficult to say some of the things I would have liked to with my husband sitting right there, listening and watching us. I wished some of it had been private or at least in writing.”

The need for Clear, Cooperative and Consistent Practices around Driver’s Licenses that do not alienate those who provide care and those who receive it:

  • “I see the value of the Ontario MTO driver- turned- 80 tests. But I disagree with the can-I-drive-at-80 test, which test the same perceptions but not any driving test. These test need to include a driving road test.”
  • “I was told that our OJT was not required to report the results of our assessment to the MTO but if she provided it to our GP, they might be required to report the results to the MTO, and then they would revoke the license.”
  • “It seems again everyone is told/ experiences something different.”
  • “I think the bad guy needs to be the Ministry of Transportation of Ontario (MTO) as the family doctor still has to be trusted by the patient for future care, as does the family.”
  • “The doctor has to be the messenger, but not “seen” as the judge. Just let the MTO be the one who takes the blame.”
  • “If it is another doctor who does the testing, not the family doctor, whichever doctor they have to see again shouldn’t been seen as the one making that decision.”
  • “If a person has to go back to a doctor or specialist on an ongoing basis, it is not good for the person who needs their care to be suspicious of them.”
  • “I think the MTO decision and they should deliver the message – in a compassionate manner with supportive family/friends present.”
  • “The doctor can recommend no driving, but the MTO is the law for who has a driver’s license and they have the big bureaucratic shoulders to keep caregivers out of the upset. However, it needs to be done in a caring and compassionate manner with family present!”
  • “I know someone who went to a Memory Clinic. It was the very first time they had ever even begun having a conversation or accepting the fact they might have some memory loss and they were told that day they could no longer drive – not even home. Good luck getting him to visit that team again for a care plan!”
  • “This would have to be done in stages. It could cause major problems at the counter and getting a letter is bad enough. In stages – the doctor, the letter with the appointment date for turning it in and explanation about getting an ID card, right then not – not mailed to you weeks later.
  • The Driver’s License thing is horrible, partly because the staff at the registry is not well trained for this (like NO training) and I think it should be automatic that one is given an ID card to replace the Driver’s License that is relinquished. They need ID and are so used to having a card that says who they are and where they live that looks and is official!”
  • “I had to carry my husband’s passport…Not everyone can afford a passport and it doesn’t fit in your wallet.”
  • “We lucked out when we went to Service Ontario they recommended that we replace the driver’s license with an ID card that they have to issue.”
  • “I never realized how important having proper ID is to an individual until my mom got dementia. She asked me point blank, if something happened to her how would anyone know who she is? We can learn a lot but looking after some of the little things that we just take for granted like paper work that gives someone an identity.”

Assessments Need to Be Ongoing:

  • “For lots of things, the assessment needs to be an ongoing basis vs a huge test that makes you globally incapable.”
  • “Communication and relationships that is the key to assessment!”


December 2016- January 2017 Face to Face Advisory Conversation Summaries:

Education about Dementia, Managing Behaviours and Communication/Hiring more staff: Several participants felt there needed to be better education for staff who work with patients/residents living with dementia to learn how to manage behaviours and communicate effectively. They also felt hospitals, home care and long term care were all under staffed and resourced.”

  • “Some of the staff need training on how to communicate and approach dementia patients better. It is not easy – we know that- they need to be better equipped.”
  • “Budgets are tight, but they need more staff working – there are also too many part time and casual jobs. It’s not fair to the staff. I would honestly pay more a month to live here if it meant we could have more staff.”
  • “Hearing aids are a problem. Most of the time they are not in, they are put away somewhere or they don’t know how to put them in.”
  • We took my mom to an eye clinic in a city we were referred to. She has macular degeneration. The doctor got mad at her because she wasn’t answering his questions. He had no understanding of dementia!”

Don’t Know How or Who to Reach Out to when there are problems:

  • “I am walking a fine line every day of advocacy and fear of repercussion.”
  • “When there are problems with my mom’s care, it feels like I don’t know where to go or what to do. There is no one to go to that really “hears” me. It is so frustrating. I am not sure what the chain of command is, and I don’t want to be seen as adversarial or my mom might pay the price.”
  • “UTI is a real issue for us. I suspect one and days seem to go by before a test is done and time after that before it is confirmed and the antibiotics are given. In the meantime the consequences for my husband and I are just terrible – but if feels like no one is listening. The staff are all great…really they are…but there is a gap in the way this is taken care of for sure.”

Access and Navigation: Several participants shared stories where they were having trouble accessing services, getting the right professionals on the phone or to return their calls and not knowing where to reach out for help.

  • “We had a terrible time getting occupational therapy.” If you don’t advocate, you don’t get what you need and people who don’t have an advocate DON’T get what they need.”
  • Transportation is a problem. Even when we can arrange for the ACCESS bus, the driver is unable to leave the bus. My mother is in a retirement home and needs someone to cue her to be outside and ready for the bus for Adult Day. It’s a great service that is right on time and easy to navigate, but I think there is a big need for volunteers to help people get to and from the bus and back to their rooms or homes.”

Many Positive Experiences and Words of Thanks: There were several examples of people who were very happy and grateful for the “wonderful” and “excellent” care they received in Long Term Care, through physicians, home care, adult day, CCAC, The Alzheimer Society, Veterans Affairs and hospice.

  • “I am so thankful there is a place for people to go who need help to live out their later years. I can remember one very caring RPN consoling me when I lost my patience with my parent. I was so ashamed and emotionally shattered. I will never forget what she did for me.”

Stigma:  There were several stories of how stigma and fear of what people will think became barriers to people asking for and receiving the care they need – especially in issues involving adult mental health or substance use.

Hospital Discharges: There were several stories of hospitals wanting/needing to discharge patients before the care partners, adult children or spouses felt prepared to care for them. This was a great cause of stress for people- many of whom reported "Having a melt down" and "Weeping uncontrollably" in the hospital. The route to receive home care supports was often not clear or sufficient in their eyes. They also reported being told one thing by one professional and the opposite from another and feared home help would be offered but removed too soon.

Shortage of Affordable Retirement Homes and Supportive Housing: There were several people reported a lack of affordable retirement homes and supportive rental housing situations. They also expressed concerns about some older retirement homes needing to close down in their area because they could not afford the retro-fits to keep them up to “code”.



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October/November 2016 Lived Experience Advisory Conversations

Summaries Resource Exchange:


This Lived Experience Resource Exchange for October and November 2016 is a summary of face to face conversations, two SE Ontario live (typed) chat conversations and one provincial live (typed) chat event. These conversations involved input from forty-seven people from across all of South Eastern Ontario. Thirty-seven people were spouses, adult children, family or friends and ten people were older adults living with a dementia, mental health or other neurological disorders. 



Advisory conversations in October and November 2016 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 2016 Resource Exchange – SE Ontario Lived Experience Network 


October SE Ontario Live Chat Summaries:

October’s Lived Experience Café Chat question comes from Long Term Care Home Cooperative of Lanark, Leeds and Grenville. During a discussion about education, the topic of the importance of providing education for family members was raised. These are the three questions. As a family member/care partner of someone living with dementia or similar diagnoses, what are some key educational topics you:

  1. What would like to see shared with your family council group or at an educational event for family members/ care partners living in Long Term Care or Retirement Homes?

Key Themes:

How Do We Partner Better with the LTC Homes?

  • “(As care partners of someone living in LTC), Who do we address our concerns first? What is the chain of command?”
  • “We have no rules of the road for transitioning, what are the needs to make the transit do we address and talk to staff and what staff for what?”
  • “How can we be better assistants or partners to staff in LTC?
  •  “What are the processes and proper ways to deal with concerns or to be active participants in the home?”
  • “We are part of a team and we have to be given a tutorial on how things work so we can work together...we are like new employees (that help for free).”
  • “Staff do not see us as a useful tool or aide. I felt suddenly left out actually. I have felt like we need to partner, we caregivers still want to caregiver and how can we do that that is helpful to staff. I don't think we should be put out of a job but incorporated into the system.”
  • “I’d like a sit-down where they ask: “What can you do? What do you want to do? What do you have time for?”  - So they can figure how to utilize us. This conversation wouldn’t just involve family members – but staff too. A facilitator might be a good idea but it should be a staff person, otherwise the staff will just view this as intrusion.”

Personhood Education:

  • (When it comes to learning about my family member’s person history, likes, dislikes and behavioural triggers/cues), “What do they really really need to know about their new resident? How long a snapshot is too long? I’d love to have a talk on that.”

Grief, Guilt and How to Cope and Move Forward:

  • “The Alzheimer Society provides support and education, but some education on guilt, grief and just how to continue your life might be helpful.”
  • “I found when my husband went into the hospital and then LTC my difficulty was that I felt like a widow but not. It was hard to reconcile.”
  • “I couldn’t get rid of his stuff in the house because it felt like a betrayal or an admission. I went to a bereavement meeting for awhile, but felt awkward- as others were really bereaved.”
  • “It took two years for me to donate my dad’s suits.”
  • “I think a short series about coping with this particular type of grief would be helpful.”

What to Expect in LTC? and Tips on How to Visit Well:

  • “I’d love to attend a talk on how to visit (my family member in LTC) well. Even still, I find visiting difficult. I’d love a talk on: How to visit, a tour or handout that says “Here are the items you can use, here is Montessori corner, books etc. and here’s what to do with them. Here are some tips for visiting a person with dementia and what to expect.”
  • “I still feel dumb when I visit. I’d even like some training on how to approach her better…even now. I have not tools.”
  • “Also, because we don't know what to expect there are a lot of assumptions. I see people come in full of defence mode which in turn makes the staff respond in full of defence and it takes weeks to sort out at a crucial time for the resident.”
  1. What would like to see offered to families and care partners who are still living in the community?
  • “A social worker for three months minimum to help with transition. I had a social worker assigned to me, probably through CCAC, mine was terrific.”
  • “Letting go and starting to find time for myself again, took me at least a year to accomplish on my own… a social worker would have been a blessing.”
  • Follow up would be nice. I can't remember any kind of follow-up offered to me. After he was placed the file was shut and it was over.”
  • “Distraction. They are offering an eight week art course at the Alzheimer Society right now for Caregivers. It is so awesome!”
  • Accountants and Lawyers need to be better versed in dementia problems and help caregivers to know where they can get breaks. Dementia is a disability claim. The Alzheimer Society should also be making everyone aware of that.”
  1. What has been very helpful to you as a care partner?
  • “Good care for my husband and the social worker and my Alzheimer Society support group.”
  • “Good care means staff trying to figure it out and being empathetic and good problem solvers working with me.”
  •  I haven't had to worry about loss of income...which is what happens when you can't possibly work fulltime and still be a caregiver, but some people suffer terrible losses on the job front.”
  • “Being listened to by the staff (and partnering with me.)”
  • “Peer support and my faith community were so patient and supportive with me.”
  •  “There needs to be a lot more tax breaks or social assistance for people who are trying to provide and give care…like a much lower tax rate or even NO tax rate.” 

October Provincial Live Chat Summaries:

During our October 2016 Provincial Live (typed) Chat, we welcomed special guest Laura Meil, Manager for the Partnership and Consultation Unit, Capacity Planning and Priorities Branch with Ministry of Health and Long Term Care. There were a total of seven participants from Sudbury, Brighton, Toronto, Cloyne, Thessalon, Oakville, and Perth, Ontario.

The purpose of this live chat was to answer questions that will help inform the creation of the Provincial Dementia Strategy:

1. What would make it easier for people with dementia and their care partners to navigate existing available services and supports?

Key Findings:

Family Physicians/Specialists Well Trained about Dementia and Able to Share Resources:

  • “I think that doctors need the education to know what is available so they can point the patient and caregiver in the right direction.”
  • “I think doctors need to give navigation tools to the caregiver on diagnosis, doctors are too busy to know all the ins and outs of this.”
  • “Some (doctors) point to CCAC and then let you to it. If you don't know what question to ask, it is difficult.”
  • “When my Mom was first diagnosed, I wish I had known the Alzheimer Society was somewhere we could go for support as the person not diagnosed with dementia. Mom was referred to the Society by her family doctor but as far as I knew it was to keep her engaged and active through a social program. I was so naïve, blind or just plain unaware.”
  • “We were directed by the neurologist to the Alzheimer Society.”
  • (Most participants reported not being referred to the Alzheimer Society by their family doctors.) “The Doctor did not know about Alzheimer Society.”
  • “It was like medical information was confidential and therefore family was not included on any of the discussions the doctor may or may not have had with my mother and she of course told us as little as possible.”

Local, Consistent, Coordinated Approach to Care and having one point of contact- Advocate/Care Coordinator:

  • “The only place that was well coordinated was the Alzheimer Society and the Behavioural Supports Ontario consultant. They understood the needs and where to get the right service.”
  • “It would be nice to have a “go-to” person after diagnosis, someone to call and help figure out what is next as the dementia progresses.”
  • “Yes, I definitely needed an advocate on diagnosis, not just a case worker.”
  • “Relationships and Local Info made a difference.”
  • “My mother went into LTC a year ago. We needed support for daily living about six years ago. It started with one hour a week from CCAC, but the Alzheimer Society got us up to 3 hours a day.”
  • “I went to a workshop and got introduced to a BSO worker who has stayed with our case all along. That is better than the inconsistent service provided by PSW organizations who cannot provide consistency. This is important to Dementia patients.”
  • “The most consistent care for us was the Alzheimer Society and then BSO when Dad got worse.”
  • “I think having “a” person is important, even better if it's the same person every time.”
  • “I have (seen a counsellor) once Mom came here for LTC. I was not coping well & after discussion with my GP she suggested going to the Alzheimer's society for help. They in turn helped me start with a psychologist who stayed with until well after Mom had passed away. I am lucky I have private insurance that paid for it. This is a big deal; no insurance could cause problems that are not easily overcome.”
  • “What worked well were supports that travel alongside the "person and family" throughout their entire experience - not just a one-time service but an ongoing support.”
  • The benefit of living in a smaller community was noted. Things were simpler, relationships were better and this improved navigation: “I think Family Doctors & Nurse Practioners in small communities have more info through their office staff - everyone has a friend or family member who is on the road. In cities it may be more complicated. I know my brother had more trouble finding help for Mom.”

Easy to Access Paper and Internet Resources:

  • “We need a navigation tree: ABCD and what happened if you get stuck out on a limb.”
  • “I feel like that I am tech savvy, google was step 1 for me in finding the Alzheimer Society.”
  • “I found the Alzheimer Society because I googled Alzheimer and got (Toronto, Hamilton and finally Mississauga/Halton).”
  • “Many web sites show you places -and in some ways shows you what you need to consider, but they are talking about help for physical issues and children’s issues not just dementia. It is confusing.”

Educating the Public and Tackling Stigma:

  • “I think that over the past few years "Let's Talk" has really helped make the general public have a better understanding about mental illness. We need a public forum similar to make everyone in general more aware about dementia and give everyone tools to "Let's Talk" about dementia.”
  • “We actually asked the Alzheimer Society of Peel to develop a workshop (for caregivers) on "Emergency Room Preparedness". It was after we experienced it and our input went into the workshop.”

Peer to Peer Support and Education:

  • “When you have lived experience you are "in the know". Lately, I have had a few friends reach out to me on social media asking for advice since I'm "in the know". Once they are connected to services, they speak highly of them!”
  • “I would agree with being in the know. Same thing has happened with us and we offer that info to help others.”
  • “Most definitely peer support is key. It was for me anyhow.”
  • “I feel that helping others through the maze is best done by those who have had to themselves, along with service providers.”
  • “I also belong to CARP and have provided my knowledge of services to others who are just beginning this journey.”
  • “So, it sounds like service provider experts + lived experience experts = lots of good information and support.”
  • “I try to help others and of course I don't give advice as much as I point them in the right direction.”

The Use of Technology and Access To Services in More Remote Areas:

  • My small town issue - it is 85km one way to the Alzheimer’s Society they are very supportive over the phone but you really need a "real" person.”
  • “Thank you for bringing the northern perspective!”
  • “Distances in our big province are so often challenging!”
  • “There are great advantages of technology in visiting with spouses and family in LTC like Skype and Facetime. Maybe those technologies can help people to access supports too.”
  • “Technology is a great resource, I am actually in Alberta on business but still able to join in this chat, my what a world we live in.”
  • “I would say that the technologies may help but may also turn off some caregivers because they have never used computers. Having said that, I learned all about skype from a man at the Manor who was 99 + 8 months and skyped his great grandson in South Africa!!!

2. What existing services or supports are most effective in assisting care partners of people with dementia? 

Key Findings:

Day Programs, Respite and Social Work for Care Partners:

  • “We have day programs and the person with dementia can attend & be stimulated is a safe environment. We referred to it as a "club" to help my mother enjoy more.”
  • “Day programs are essential, it was wonderful for my husband and myself.”
  • “We also have "Nora's House" in Mississauga. My mother stayed there for 2 weeks while we went on a cruise. It is a house owned by Alzheimer Society of Peel (donations are provided to keep it running) and it had 10 beds and staffed by nurses that are trained on dementia. My mother did not want to come back to her apartment. It cost me $75 per day and I got a tax receipt for it. The best part is that I could go away and not have to worry.”
  • “We need more Nora's houses for sure. The respite beds in LTC are often scary for people to go to the first time.”
  • “There are some similar programs around the province, and I've always heard great things about them.”
  • “For a while I didn't need help from home care, just needed time to do groceries and take a break.”
  • “There needs to be more respite services available, i.e., respite beds so caregivers can get a real break.”
  • My Mom is in long term care, I am the only child that lives close to the long term care facility, I would like a go to person centered in my area who would visit my Mom regularly when I am out of town and report back to me how she is doing. That would take a lot of stress off.”
  • “It is hard when you are the solo supporter of your parent of family member.”… “I have wished for that and tried to find that 100 times, it would help so much!”
  • “I found that another frustration with my Mom when I left town They LTC facility would NOT permit a paid PSW from an agency to come a socialize with my mother not provide personal care but if I paid a staff PSW off duty they could to it.”
  • “So, if it is respite for the care partner to give them the break they need - maybe the conditions need to be changed?”
  • “I am hearing from care partners and from LTC staff and leadership that they wish they could afford to have social workers on staff to help support families. They are at a bit of a loss to help families because they are so busy and the resident is their real mandate...families can feel a bit lost.”

Home Care and Access to Consistent Services across the Province:

  • “Home care is confusing. It was hard to know what we qualified for and it was always someone different which was confusing for me and my dad. We got really tired of telling our story. We need information on changing needs as the disease progresses. Next, we need help for the caregiver as long as client is at home - everything from a night’s sleep, going for groceries and meeting a friend for tea.”
  • One issue that I know comes up a lot when talking about home care is the stipulation that the care receiver MUST accept bathing in order to qualify for other in-home services. My grandmother had this challenge as she was very uncomfortable with the idea of a "stranger" bathing her, but since my mother (as the primary caregiver) needed help, they had to take it or leave it altogether.
  • “Existing services differ by area. We are fortunate to have many services in Mississauga/Halton that are not available in Etobicoke (Toronto) even though it is next door.”
  • “Qualifying for in home services is a nightmare.”

Education for Care Partners:

  • “A few years back, I attended a day-long seminar called "In My Shoes" That type of seminar where care givers and medical providers come together was a great eye opener for me and it lifted the dark veil I was walking behind.”

3. What would an ideal dementia-friendly community look like?

Key Findings:

Compassionate, Empathetic, Knowledgeable and Stigma-Free Communities Searching for Creative Solutions:

  • “Two words come to mind for me - knowledgeable and compassionate.( A community that understands the disease and doesn't just brush people off because - well, they are old anyways".
  • “When we were in Hawaii we saw houses where 4 people lived together and looked after each other. Some with dementia (not advanced) could do things that others in the house could not. Those with physical issues benefited as well as dementia patients. A community nurse looked in on them weekly.”
  • “One where people don't treat you so different when you have dementia. People freak out when you tell them your dad has dementia. They don't do that with diabetes or liver disease.”
  • “You know the village to raise a child well, well persons living with dementia – it is the same.”
  • “There was a video, I think from Sweden? where students live in the same facility as dementia patients and live rent free in exchange for 20 hours a week of one on one time with the residents.”
  • “Denmark has a whole town set up for dementia. People can go where they like and shopkeepers know everyone ant treat them like everyday people. Dementia patients thrive there as they are independent.”
  • “So many ways that strong community can help.”
  • “I think the stigma is going. Education and awareness are the key to getting rid of the stigma.
  • “I also saw that somewhere in Western Canada a high school held a dance where they invited residents from a nursing home to be their dates. Breaking down the barriers.”
  • “I used to take my mom to help in the kitchen when a group I belong to was cooking for a dinner. -It was great she was "normal" doing normal things My mom would wander, but everyone kept an eye on her & I could relax like even go the restroom by myself.”
  • “The Bell Let's Talk Campaign is frequently mentioned in our chats as something positive to borrow from.”
  • “That "person Centred" initiative sounds good - if they get it going. It must include dementia.”


November SE Ontario Live Chat Summaries:

November’s Live Chat question comes from Dr. Julia Kirkham, Queen’s University, Providence Care – Mental Health Services. Dr. Kirkham would like to ask those with lived experience two questions that have been coming up in her work recently:


1. When it comes to admissions to Long Term Care, in your opinion: Should people be “bumped” from the crisis list if they go to the Emergency Room? If not, how should it work if people are waiting for Long Term Care in hospital?

2. More often  people (especially with behavioural symptoms) are being refused admission to Long Term Care? Should this be allowed? If yes – What would a better solution be ?

Question One Findings:

Participants felt a person in hospital in an Awaiting Long Term Care Bed was in just as much of a state of “crisis” as someone at home waiting for care.

  • From friends at support groups...the hospitals are not equipped to care for patients in need of long term care (especially when dementia is present) and the wait in hospital is not very positive. I believe they should be put on super-crisis list, if they end up in the hospital because their family cannot deal with the dementia any longer.”
  • “I am sure glad this is not what happened with my mom. She is a woman of height 6'10, weighed 180 lbs and was in crisis often, admitted to hospital over and over because of not taking medication properly, not eating properly - all the things that go hand in hand with dementia. When she was finally admitted to long term care she weighed 110 lbs, had dropped from size 16/18 clothes to size 8/10. Living alone, if she had been bumped from the crisis list because she was in hospital, she would no longer be with us.”
  • “It is questionable whether someone in an ALC bed is at less risk. Studies have shown that physical de-conditioning starts in a couple of days. There is an elevated risk of falls, increased confusion, an increased sense of being abandoned by their caregiver. And they still face another transition if they don't succumb in the hospital. Mental stimulation and socializing opportunities are limited, and sooner or later the family will be asked to pay the daily rate for LTC if I'm not mistaken, or perhaps if they don’t accept an offered placement.”
  • “I felt the hospital gave us the sense that she was being taken care of properly, but really she was not. Between no one ensuring that she ate (lost 30 pounds in three months), extra sedating drugs and changes made to medications, a lack of activity and recreation and an undiagnosed delirium – going to the hospital WAS the crisis.”

Question 2 More often people (especially with behavioural symptoms) are being refused admission to Long Term Care? Should this be allowed? If yes – What would a better solution be?

Responses were mixed. Some felt special residences should be created to support this population, others felt they should be in Long Term Care, but that homes should be provided more staff, more training and the ability and flexibility  to adjust their schedules and environments to suit the resident. All agreed that efforts to support people living with significant responsive behaviours in their homes was NOT feasible, although preventative steps were suggested that might keep them home longer.

Key Findings:

Support for Special Behavioural Support Residences:

  • "My husband needs a permanent place with coffee shops, games and activities that are geared to his level where the staff are trained and the environment is designed for people like him. I understand there is a place like this in Edmonton that has supportive help and different transitional floors based on the resident’s need. It can be very frightening and dangerous to the other residents and staff when he gets frustrated and acts out . It’s not the right place for him, but there needs to be somewhere that is - like Providence Care but a permanent home."
  • “I believe that specialized homes for dementia patients are the safest most beneficial answer”

Support for Keeping Person in Long Term Care with more staffing, education and the ability and flexibly to adjust the environment and schedules:

  • “I think the solution is to provide services that would prevent that trip to the ER. Rapid response staff for nursing homes, nursing as home visits, intervenor help to deal with emotional and care related issues – more staff and more Long Term Care beds!”
  • “The creation of specialized units (not located in the same region as the resident) would limit the residents' ability to be cared for by family while in the home. Better to be at local LTCs, with additional staffing under a formula, with increased access to experts in behavioural management.”
  • "Increased Staffing and experts in behavioural management are important - what about the people who due to responsive behaviours are very aggressive or unpredictable? How do LTC's keep everyone safe?”
  • “There simply has to be more staffing for LTC homes – 24/7 to keep everyone safe and thriving.”
  • “I would fight to keep my Mom at LTC even though behaviour issues are starting to develop. Have we not been discussing that behaviours can often be identified with good communication and trying to figure out the trigger?”
  • “I don’t think they don't need to go anywhere. The amount of staff needs to increase and   more education is needed on these issues.”
  • “It feels wrong for a home to say they won't accept someone with behavior challenges. I know they're stretched to the limit but they're supposed to be the experts. If the experts don't have the skills and resources to deal with an individual with behaviour challenges, I'm not sure how a caregiver is expected to cope. I’m not saying it’s their fault – but rather than moving the resident – equip the Homes to care for that resident.”
  • I don't think you can send the really hard cases away to one place,that is going backwards...LTC has to be integrated.”
  • “I do think that rooms should be assigned based on suitability, not availability - if a roommate is going to be a trigger to someone and causes them to fail - we have to have some flexibility to adjust that more than currently exists.”

Preventative Solutions to Keep People Home Longer

  • “I struggle to understand how an in-home solution would work. If a 200lb man with dementia decides he wants to walk over the top of his 120lb wife to go out the front door, he's going. Behaviour can't be scheduled like a bath.”
  • “My neighbour without dementia was exhausted with the amount of people flowing through her house to take care of her. I don't think that once you have exhausted the adult day relief that there is anything left but a Long Term Care that works like adult day on a 24/7 basis.”
  • “I don't think family caregivers should be asked to do more. They have been on a long journey by the time behaviours develop. Home care with behaviours is not realistic. The best I can think of is a smallish community setting where triggers are minimized by knowledgeable, consistent staff.”
  • “ I know there has been some success in supporting people with mental health issues in their homes with teams etc. but these people are not forgetting to turn off the stove or wandering outside in January.”
  • “We needed a BSO team to help us and I needed training, but after a certain point it is just not doable at home without round the clock care and even then, your home environment becomes so compromised.”
  • Another idea... reduce the early stress from a caregiving relationship by offering 'early and often' respite, more access to day programs etc. By front loading the support, caregivers may have more reserve to cope a bit longer at home… and caregivers need training in managing behaviours…and Respite, Respite, Respite!”
  • “Real (responsive behaviour) Caregiver training and the BSO support together would have made a difference for me. Knowing what to do and who to call would have slowed down my sense of urgency and I might not have been so quick to take her to the hospital.”

Recruitment and Staff Support:

  • “I think there would be a lot of benefit to creating more 'career path' jobs in dementia care. Promote the best; don’t expect folks to work more than one job to get enough hours to live on. Let the cream rise to the top and be models for excellent care. Engender loyalty and pride in the workforce.”

A Need for more affordable retirement and creative assisted living solutions that support people living with dementia and similar diagnoses:

  • “We really need more affordable retirement homes, affordable and creative living solutions. There is a growing trend toward two levels of care – publically funded and government funded. $6,000 per month can buy a lot of expertise, but what about the many people that can’t afford that.”
  • New places are being built that are stunning and amazing - but I don't see a lot of new easy to access and affordable retirement homes being built.
  • “What about Co-housing with vetted live-in PSW students, OT students, nursing students who would be available for overnights?”
  • “The high cost of retirement and assisted living solutions: We have found an amazing situation for my parent, but it is very expensive. We would never be able to afford it if she wasn't a widow - as we will need to sell her home to finance it.”

October-November Face to Face Advisory Conversation Summaries:

  • Adult Day Programs: Participants mentioned on numerous occasions the importance and great value they found in adult day programs. "Adult day is the only thing that is keeping me going. Without it we would never be able to cope."
  • Caregiver guilt and grief :There is a great need for Social Work and Peer Support to manage this.
  • Access and Navigation: Several participants shared stories where they were having trouble accessing services, getting the right professionals on the phone or to return their calls and not knowing where to reach out for help.
  • Hospital Discharges: There were several stories of hospitals wanting/needing to discharge patients before the care partners, adult children or spouses felt prepared to care for them. This was a great cause of stress for people- many of whom reported "Having a melt down" and "Weeping uncontrollably" in the hospital. The route to receive home care supports was often not clear or sufficient in their eyes. They also reported fearing home help would be offered but removed too soon.
  • Community Behavioural Supports: There were several stories shared of people who felt the need for more behavioural supports while in the home with their parents/ spouses/friend. People reported feeling frightened when met with responsive behaviours - especially acts against them personally. They reported not knowing what to do or who to call. One very positive story was shared from an adult child whose parent had been able to live well in his home despite mental health concerns due to the support of the community team and their home visits.
  • Driving: Another topic that came up was driving. Although, people recognized it was necessary to take away people's licences, the manner and process for which it happens is not often clear, consistent from person to person or done in an empathetic manner. The loss of a licence is devastating for people. Sensitivity needs to be used when delivering this message.
  • Alzheimer Society Support Groups and Memory Cafes: "We would have been lost without the Alzheimer Society. The support groups and the memory cafe get me through my month. I am not alone and I know who to ask when I have questions or concerns."
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