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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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