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An opportunity for those who plan and provide services for older adults in SE Ontario to receive the findings of our Lived Experience Network face to face, and through phone / online conversations.
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Resource Exchange and Findings

Many services have a difficult time engaging patients and receiving tangible feedback – outside of (after-the-fact) satisfaction surveys - to help them plan and evaluate what they do.

The Lived Experience Resource Exchange is an opportunity for those who plan and provide services for older adults in SE Ontario to receive the findings of our Lived Experience Network face to face, phone and online conversations. On a bi-monthly basis, our SE Ontario Lived Experience Facilitator, will share the summaries and themes that surfaced in these conversations, in a manner that honours the confidentiality of all.


Click Here to Read our Current and Archived Lived Experience Advisory Conversations

AN Invitation to SE Ontario health care planners and providers:

Being part of The Lived Experience Resource Exchange simply means that you are willing to receive and read bi-monthly emails directing you to our "Resource Exchange" Findings Page - which includes a summary of the themes from conversations that took place with participants of the SE Ontario Lived Experience Network. Information will be as general as possible and no names will be shared of either lived experience persons, organizations or staff members.

Our request: If you read something that you feel pertains to your organization or service that you will share that information as you feel is appropriate. We also invite you to share specific questions you may have for our network to discuss at our live chat events.

It is our hope that this information will be useful to you as you plan, provide and evaluate services.The goal of the Lived Experience is: Exchanging Knowledge, Partnering (with you) for Change! The Live Experience Network is not a complaints department, rather a resource with real people who want to share their experiences - both good and bad - so we know what is needed.

Thank you for your partnership,

Behavioural Support Services, Providence Care Seniors Mental Health in partnership with the Alzheimer Societies of S.E. Ontario


Lived Experience Report April 2017 - See out what has been happening this year!

Download Report

2014 Lived Experience Findings Report
Special Thanks to:

Lived Experience Network: It seems only fitting to begin this report by saying

Special Thanks to: Lived Experience Network: It seems only fitting to begin this report by saying thank you to the 173 people who participated in this study. Thank you for your honesty, vulnerability, and willingness to share some of your must painful and personal moments with myself and others, in hopes of making things better for people affected by dementia and similar diagnoses. BSS Leadership Team: I’d like to thank Dr. Ken LeClair and Kathy Baker for believing in the importance of hearing the voice of the lived experience and for your ongoing leadership and support to me. Thank you to Jillian McConnell for your encouragement and for your collaboration and promotion through the South East Behavioural Supports Knowledge Exchange Network. Thank you to Dr. Dallas Seitz for allowing the Lived Experience Café to partner with you and your project Also BIG thanks to Carol Mitchell for her help with design and graphics. The Alzheimer Societies of South Eastern Ontario: Big thanks to the South Eastern Ontario Alzheimer Society Executive Directors, Vicki Poffley (the lead society for this project), Laura Hare, Louise Noble and especially, the Alzheimer Society Education and Support Coordinators: Sharon Brewster, Kristel Nicholas, Melissa Kastenhofer, Barry Flannigan, Darlene Jackson, Sean McFadden , Robin Hull, Sarah Kreiger and facilitators Jack Henderson and Pam Hamilton. Thank you for taking a chance on this project and for promoting it to your families. Thanks to your introductions and sensitive co-facilitating of these sometimes difficult conversations, you have helped the voice of the people you serve to be heard. The care and dignity you afford the people you serve is more than commendable. SE LHIN: Finally, thanks to the South East Local Health Integrated Network for supporting this project and for your continued support as we move forward.
I invite everyone to contact me with any feedback you would like to share regarding this South Easte

I invite everyone to contact me with any feedback you would like to share regarding this South Eastern Ontario Lived Experience Conversations in Care 2014 Report to the Community.
Behavioural Support Services of Providence Care – caring for S.E. Ontario

Behavioural Support Services of Providence Care – caring for S.E. Ontario
1. A Collaborative partnership was created with the five Alzheimer Societies in SE Ontario – 1. King

1. A Collaborative partnership was created with the five Alzheimer Societies in SE Ontario – 1. Kingston, Frontenac, Lennox & Addington, 2. Belleville, Hastings, Quinte – who are currently working together with 3. Prince Edward County, 4. Leeds-Grenville and 5. Lanark – provide me access to some of their support groups to have advisory conversations with their members. 2. My phone number and email address is promoted by Alzheimer Society public education and support coordinators, but also through the SEO LTCH to their Family Councils as well as by Providence Care staff and Geriatric Psychiatry Outreach Case Managers. A social media presence also exists to promote this project and my contact info. 3. Virtual conversations through The Lived Experience Café at – Dr. Dallas Seitz was kind enough to let us piggy back on this knowledge exchange project. This site consists of discussion boards for people with early stages dementia and care partners to leave their input, advisory comments and suggestions for change. Two monthly Live Chat events also occur via live ‘typed” conversations for gathering their input.
1. From November to date, there are 178 Lived Experience Persons from all regions in South Eastern O

1. From November to date, there are 178 Lived Experience Persons from all regions in South Eastern Ontario who are participating in this network. There are 48 Lived Experience Café Members on and there have been 209 live conversations. 2. Through this triangulation of face-to-face, telephone and virtual conversations I’ve been able to surface themes and engage in knowledge translation and evaluation of activities for the system planners.
Thankful that the South Eastern Ontario LHIN is willing to fund this initiative  – working in partne

Thankful that the South Eastern Ontario LHIN is willing to fund this initiative – working in partnership with Behavioural Support Services of Providence Care and the Alzheimer Societies of S.E. Ontario – the lead agency being: The Alzheimer Society of Kingston, Frontenac, Lennox & Addington.
Becoming the Lived Experience Network Coordinator came out of my own story caring for my mother with

Becoming the Lived Experience Network Coordinator came out of my own story caring for my mother with vascular dementia and the lessons I learned from her journey. The report findings were based on the feedback and input of the Lived Experience Network conversations.
Additional Criteria:   In these conversations, People were simply asked to identify any gaps or need

Additional Criteria: In these conversations, People were simply asked to identify any gaps or needs in the health care system based on their experiences and then also to tell me what worked well and when they felt really supported. Due to the inability to fact check, a “topic/issue” had to be shared at least three times in order to be considered a credible theme. For issues of confidentiality, participants were only asked their gender, where they lived and their relation to a person with dementia or similar diagnoses. We did not record whether or not the affected persons lived at home, were in hospital, assisted living/retirement homes or long term care because we recognized we were talking about one person on a journey; where they were living on that journey would always be fluid. To protect confidentiality, the report does not include specific geographic information when citing examples and scenarios. However, there were representatives from all of these life situations and all regions in the South East LHIN represented in the initiative.
Values that surfaced in our conversations as priorities to care partners and persons with dementia a

Values that surfaced in our conversations as priorities to care partners and persons with dementia and seen as the critical factors in quality health care.
Dignity is a priority that surfaced in almost every conversation that took place with the lived expe

Dignity is a priority that surfaced in almost every conversation that took place with the lived experience participants. It is also the topic that came with the most painful emotion. The issue of dignity would arise anytime lived experience persons felt health care providers could no longer “see” the person they were caring for as a person with history, value and importance. They felt the patient/resident/client was simply being “processed”. “There is still someone in there!” said an adult daughter.
Some of the examples that surfaced in conversation:

Respecting Clothing and Belongings

Times o

Some of the examples that surfaced in conversation: Respecting Clothing and Belongings Times of transition in people’s “care journey” were the times most reported when people felt their dignity was not respected. One of the most moving stories was shared by an adult daughter. After her mother who lived in a long term care home had fallen and was transported to the hospital for x-rays, hours had gone by with no communication from the hospital. She arrived to find her mother, who couldn’t feed herself, in a hallway on a gurney with a blanket over her head. Her body and underwear were exposed to everyone walking by for several hours while waiting. A glass of water sat beside her that she could not drink and she had not been given anything to eat or drink all day. “I understand that people are very busy, but it felt like they couldn’t see that she was a person – only a case file. There was no compassion or concern for her or me.” she stated. Dignity was also listed as an issue when persons with dementia transitioned to different levels of care at long term care homes. Many people across the entire South East region raised the suggestion of creating a better “graduation” in the level of support in long term care homes. - This included keeping spouses and families together. The fact that a more concentrated effort is not made to keep spouses together (in the same room, long term care home or city) was also listed repeatedly as an example of not recognizing the person as a whole and a member of a family. “How is it that we can separate a couple who have loved and lived together for 45 years without even giving it a second thought? What does that say about us as a society?” asked a husband. Times of diagnoses were also mentioned by many as a time when their dignity and personhood was not respected. Several spouses and adult children spoke of a lack of empathy when receiving their initial diagnoses from doctors or during assessments that assessed capacity. News of the disease or loss of freedoms (like driving or the need of long term care) were reportedly delivered in a matter of fact manner often without further referrals to supports or information. “We’d just been given a death sentence like we were talking about the weather,” stated a wife regarding her (very young) husband’s diagnoses of dementia. Finally, Stigma and dignity were linked together. “When people hear you have Alzheimer’s, you become invisible,” stated a gentlemen in the early stages of Alzheimer’s disease. “No one talks to me anymore. They ask my wife how I am doing. Doctors look at her as they ask her questions about me. I don’t exist anymore. Just a man with Alzheimer’s. On a positive note, the report findings show that things are improving. Lived experience persons reported the care given in their spouse’s day compared to their parent’s days had shown vast improvement. “What they did to him (her father) was basically sedate him, tie him to a wheel chair and leave him there all day, not with dignity, like a horror movie. He died in 2008. I know they don’t do that anymore. Things were better with my husband,” stated a woman. Praise for: Police officers: One group that came up several times as really shining in the area of showing respect and dignity to persons with dementia and their care partners were police officers. A spouse shared how respected she had felt by police who intervened while her husband was suicidal. A wife spoke of the compassion and concern shown by police when returning her husband who wandered and several more shared stories from all areas of the South East region where police supported them with patience and empathy when their parents or spouses were calling police repeatedly. They were also credited for being particularly helpful for people navigating services. One adult daughter stated, “I really didn’t experience any gaps in the system. The police contacted me about my mother’s repeated phone calls and delusions and they set me up directly to geriatric psychiatry, so my experience wasn’t nearly as difficult as it would have been otherwise.” The comments: “they treated us like a person” and “they showed us respect” were common remarks regarding the police across the whole region. Supports that keep people in their home: Initiatives, supports and services like short term respite, home care organized by the CCAC, VON, privately owned care services, The Smile Program, Community Care/Meals on Wheels, The Alzheimer Society, and Adult Day Programs were all recognized as essential services that helped people maintain their dignity and “personhood” by allowing them to remain in their own homes (with their families) as long as possible. Volunteers: The respect and dignity shown to persons with dementia and their families/care partners by volunteers also surfaced in our conversations several times. Hospital volunteers, volunteers who visit and take them to appointments with church programs, Community Care and Meals on Wheels were extremely appreciated and valued. A real sense of friendship came out of these relationships.
The need for consistent care as people with dementia, their families and care partners travel throug

The need for consistent care as people with dementia, their families and care partners travel through the various transition points of their disease was a top priority named by persons within the network. Not only was consistency necessary for the persons with dementia but also their care partners and families as they supported and helped navigate care.
Examples of themes that surfaced:

Consistent Care for the Care Partners: The importance of this p

Examples of themes that surfaced: Consistent Care for the Care Partners: The importance of this priority to care partners and families cannot be understated. It is the number one need that arose in all our Live Chat events on and surfaced in most face to face conversations. When a person and their family/ care partner become affected by dementia, they enter a whole new world they know nothing about and do not know how to navigate. Although they receive direction from agencies like CCAC, The Alzheimer Society, physicians and others, for the most part, care partners felt they were left to their own devices to find answers and make life-altering decisions without all the information. They were required to do this while living through the crisis at the same time. “What about navigating the system?? I felt like I was running a business just with all the phone calls and paperwork,” stated a wife. Once people were finally assigned staff, they would be assigned new staff every time their situation changed and information never seemed to be passed on. This led to more and more paperwork and multiple assessments. Families felt dropped, abandoned and that they were always starting over. “The assessment process is a dignity threatening process,” stated a friend, “It really should be done as seldom as possible.” Quotes: A wife agreed, “One of the big things for me would be consistency. In my dealings with CCAC over less than a year we've probably had about 10 people to deal with. There is no way they can get to understand me or my husband, our particular lifestyle and issues. It feels like an almost deliberate attempt to disconnect people. It is my fervent hope that others in the future will find the process of accessing to be a kinder, gentler, easier one.” Family members and care partners from all over the South East stated the need for one consistent person to help manage their care. “We all have one doctor who manages our care, why can’t we have one caseworker for each person all the way through? People need an advocate! Multiple Coordinators don’t talk to one another,” stated a husband. “A good advocate would ensure that there are no endless evaluations and assessments, most of which are repetitious. One advocate. One information bank. One slightly less stressed-out caregiver. Things get too fractured and having to answer the same questions over and over. And it's gruelling for the caregiver,” said another wife. “I am the caseworker!” said an adult daughter. “We want one “all-the-way-through” caseworker,” stated another daughter. “Did you realize that when a client of the CCAC moves or has a change in health or territory a different case worker is assigned? Each case worker does an assessment on the client. This change of case workers can be done within weeks. The assessment does not transfer from case worker to case worker.” wrote a daughter. Need for caseworkers to be assigned based on “human need” and not “geography”. “Here we were going through the most dramatic change we could possibly face and I was being pulled away from our social worker when I needed her the most.” Consistency in Client’s Care was also listed as an essential priority for people to experience quality care. When lived experience persons shared positive stories about their spouses/parent’s care, consistency was a key part of that. Inconsistency was listed as a barrier to quality healthcare. The network reported that too many casual and part time staff with varied shifts in long term care and hospitals made things inconsistent and less stabilizing for residents or patients who are already experiencing great change. “Also, the fact that staff don't seem to be assigned to the same areas all the time means staff and "residents" are constantly having to learn each other’s needs, ways of interacting,” said a wife. Not a consistent “point of contact” to speak to in hospitals and LTC often made it difficult for families when trying to share information or ask questions about simple everyday things like clothing, food preferences and missing items. The communication went out to staff but never seemed to find the person that would make the instructions stick or find the answers being requested. Quote: “My husband had cancer and had a stoma. He loved to eat broccoli or Brussel sprouts but it gave him terrible gas. I would ask over and over for it not to be given to him, but they’d give it to him anyways. The communication never seemed to make it back to the right people.” said a wife. Home Care In home care consistency was also mentioned. People who were very happy with their care were paired with consistent, regular staff who had been chosen specifically based on their mutual personalities. These people came the same dates and times and were reliable. “I am very happy with our guy,” stated a wife, “He is fantastic and just makes my husband’s whole week brighter.” A lack of this made for very unhappy home care situations and respite situations. “For some reason, I can’t seem to have the same girl, day or time. There is no consistency, Mom isn’t happy. It is so stressful that I might as well have stayed home,” stated a daughter.” Others reported the lack of a point person to speak to when issues arise or communication needs to take place. “Having to micromanage everything is actually more stressful than when I had no help,” said another daughter. The Alzheimer’s Society was repeatedly praised for being a consistent face and friend through people’s journeys. The consistency of the support groups and staff that move with the person as their circumstances changed was seen as extremely valuable. “I don’t know what I would have done without the Alzheimer’s Society!” was a common comment heard across the region. “The Alzheimer’s Society was the best thing I could have ever contacted. They’ve been with me through everything. 150% Positive,” said a husband. The Alzheimer’s Society was often the first place people reached out for help and often were able to assist in directing them to the proper local supports and services. Their support groups, cooking classes for men and caregiver retreats were described as practical helps allowing them to feel more equipped and uplifted. They were also recognized for being advocates to persons and their families. Private Home Care Agencies were also listed as helpful. A surprising number of people shared they hire private workers to assist their parents or spouses, even after the move into long term care because of the consistency of the relationship that exists. “We have also been lucky to have a private pay companion for my mom in LTC which has been a godsend, same person for over 5 years.” stated a son.
Clear communication is another priority listed by the lived experience network as an essential eleme

Clear communication is another priority listed by the lived experience network as an essential element to quality care. With there being so many professionals, services and factors connected to a person with dementia, sharing all this information clearly and concisely with all the people who need to know is a difficult task.
Examples That Surfaced From this Theme:

Inter-professional Communication: Lived experience person

Examples That Surfaced From this Theme: Inter-professional Communication: Lived experience persons shared their frustration about the lack of cross-communication and sharing of information between professionals, doctors and specialist, resulting in contradictory advice and unnecessary tests and appointments for chronic and acute care needs. Quote: One wife shared her struggle to get her husband to an appointment, arranging a ride, struggling with the icy weather and managing his behaviours, only to have the specialist say, “I don’t know why they are sending you to me, it isn’t really necessary.” Again, when care stories were described as positive ones, they involved a team approach with open sharing of information and ideas. “The psychiatrist agrees he is ready for LTC. AND they are all talking to each other and communicating back to me to keep me informed! WOW! I am so grateful this is finally happening. Everyone involved have found ways to talk to each other independently of me. This is how it needs to be.” writes a happy wife. Knowing the Patient: When people are “transitioning” i.e. from home to hospital, hospital to long term care or long term care to hospital. This is a time when information sharing is essential for people to experience quality care. While key medical information seem to be transferred clearly, information about their dementia, personal histories, best practices and behavioural triggers were not. Because of how fragile this population is, a lack of knowledge of any of these factors could cause a person to escalate from a manageable state to a crisis situation very quickly. Quotes: “Knowing how to treat each patient is part of their care. They need to know what works for this guy and that guy, it is part of their medication. It is not a pill, but it is part of the care process for each individual,” stated a wife. This sharing of best practices also needs to happen consistently between hospital and LTC staff. “When a staff member learns something that “works” for a resident that information needs to be shared with all the staff…but that doesn’t seem to happen,” said a friend. The need for a “care/behavioural” passport that travels with each patient when they are transitioning would be most helpful. “I see the need for what I call two data bases, “stated a daughter, “One is the online medical information that ALL professionals would access whenever you have to contact them and the other would be similar to the great Alzheimer’s booklet that addresses their social and emotional needs.”’ Health Records: Many felt the restrictions surrounding privacy, protection of health information laws are doing more harm than good. In light of the fact that persons with dementia cannot advocate for themselves, the network believed family members and anyone who is part of their circle of care should be allowed to access information if it was for the person’s good. The majority of the lived experience persons felt that every person should own their own electronic medical file for easier sharing of information. People also could not believe these records do not yet exist in a common transferable electronic matter. “Are we not living in a technological age?” asked a wife. Better Communication Within the Service Agencies and From Them: Strong, clear and consistent communication within the agencies that organize services and provide them, as well between the serving agencies and clients was an absolute must for people to feel they had been cared for well. Texting: PSWs, and agencies that organize them, using “texting” as a means of distributing information was a very sore spot for family members and care partners. “Emails already can be misinterpreted, passing on such important and often complicated instructions through texts is very troubling,” said a daughter. It was not uncommon for PSWs to cancel or alter arrangements through text messages the morning they were supposed to provide services, leaving families in a bind with appointments to re-schedule and no way to ask them further questions. Information Sharing: It was also very troubling for families when information about medications being distributed or changes in behaviours observed in the home were not reported back to families in a clear manner. Sometimes, the PSWs and caregivers reported not receiving correct instructions from either CCAC or their agencies and therefore were late or not present when expected. One woman shared how she had several conversations and made arrangements months before for there to be respite for her husband in their home for several days when she visited a daughter out of province. When the time came, information had not been passed on properly from someone. Her husband spent almost two days unsupervised while his wife made frantic phone calls from afar trying to make sure he was taken care of. “It was a terrifying and helpless feeling and so completely unnecessary!” she stated. Need for Team Approach: Another daughter stated, “In addition, the agencies need to take more of a team approach. I would have loved to have the nursing service, SMILE program and the private caregivers meet.” There were also many examples (in Home Care and LTC and BSO Mobile Response Teams) where quality care was happening, but information was not shared with family members and partners in care. Neglecting to Follow Up: Follow up was another communication problem across the region. Several family members reported anxiety that after having very positive meetings with Geriatric Mental Health Teams or CCAC, the follow up that was promised never happened. Several people reported leaving multiple answering messages and emails that were not replied to. Quote:“We were supposed to meet back for a re-assessment and I’ve left countless phone messages. It has been 19 days!” stated a daughter. “The only area where I feel a bit adrift is the Geriatric Mental Health Team. You see them a couple of times, then they close your file. There isn’t any follow up from them. If I wanted to have my husband assessed again, I’d have to see his doctor (on the sly) and request it…they are extremely overloaded with cases,” said a wife. Contacting the Person with Dementia and not the Care Partner: Another serious issue for several members was agencies repeatedly calling and leaving phone messages (like changing dates of services, cancelled appointments etc.) with the person who has dementia and NOT the family members or care partners. Family members who did not receive the long forgotten messages would find out (after the fact) that no one had been there to feed or bath their parents. Others took their parents to appointments that had been cancelled. People reported drivers calling the person with dementia (and not the care partner) to say the adult day program was cancelled and doctor’s offices or hospital programs calling to schedule or re-schedule appointments PRAISE: There were many wonderful examples of occasions where effective communication and services went well in people’s homes. “It was CCAC who really came along and rescued us. After they came everything was better. Because of them we were able to stay in our home. We had a social worker, a PSW to give me a break a couple times a week and they even helped us make our house safe,” stated a couple where the wife was in the early stages of dementia. When communication happened clearly, experiences were positive and people felt truly cared for and supported.
Sufficient Staffing and Services was an obvious element that arose in the lived experience conversat

Sufficient Staffing and Services was an obvious element that arose in the lived experience conversations. This was an area where there were several gaps identified.
Examples that surfaced from theme:

Lack of Services: The lack of hospital beds for acute care, ho

Examples that surfaced from theme: Lack of Services: The lack of hospital beds for acute care, hospital beds for seniors awaiting long term care, geriatric psychiatric care, long term care homes, short term and long term respite, home care and adult day programs were commonly discussed, along with the effects it had on families. Quote: A woman reported despite having a fantastic relationship with her CCAC Case Manager, of being shocked at the length of time it took to place her mother in Long Term Care. “Every three months they told me ‘She’ll be in a home in 6 months’ and this process took three years!” Running back and forth caring from a distance and filled with anxiety that her mother was not safe, the daughter was forced to quit her job. “Unless you are declared being in crisis, there is no bed. This just has to change.” Long Waiting Lists: Other services that exist to support people staying in their homes also have incredibly long waiting lists. Several people reported two-year long waiting lists for programs like the SMILE program and Adult Day programs. “By the time he qualifies, it is going to be too late,” shared a wife. Short-term Respite care was also listed as a great need. People reported having to request these services months in advance and even then were required to drive great distances (which is particularly difficult for those who did not drive). They also found many times respite services offered were rigid in their definition of what staff were allowed to do and did not always meet the needs of people. “Respite is there to provide rest for weary people. It looks different for each person. There has to be some flexibility,” said a wife. Care for Both Spouses: There also was a great gap in finding respite care for both spouses at the same place. Due to a lack of availability of this kind of service, one husband reported having to pay $3000.00 to receive lodging and care for ten days in a retirement home, so he and his blind wife with dementia could be together while he had hip surgery, something he had to negotiate without any assistance. “It would have been too difficult for her being blind and with dementia to have been apart from me for that long. This was the only way to care for her and myself together.” Services for people under 65 was another large gap identified in the system. Although, most people did not begin showing signs of dementia until their mid- seventies and eighties, several people had family members who first were diagnosed in their late forties and fifties. Quote: “There is nothing in place for people like us,” said a wife. People reported time and time again seeking services and supports only to find there was an age cut off that kept them from qualifying. The emotional and financial strain people experienced was extreme. People expected to have their partners or spouses working much longer and retirement plans were not in place. They were also required to stop working earlier than planned as they became full time caregivers. Spouses and parents that showed behaviours and aggression were much younger and stronger, making managing their care very difficult. Services and supports that did exist were geared for much older clientele and these members reported feeling very alone and exhausted. Dental Care and Physiotherapy was another gap reported often for people in care. Family members and care partners assume their spouses/parents teeth are being adequately brushed, only to find out a year later their mouths are full of cavities. Not only is this expensive but also traumatic for people with dementia, often requiring day surgery. Quotes: “No one told me they weren’t cleaning his teeth thoroughly or I would have made arrangements for someone to do so,” said a daughter. “We just put out $1400.00 we don’t have for his teeth,” said a wife. Physiotherapy services was also reported lacking while waiting in hospitals for LTC. One husband reported, “There was no physiotherapy or anyone available to keep her active while she was in the hospital. She walked into the hospital and six months later, her muscles were too weak to walk or turn the wheels on her wheel chair.” Transitions: People reported that in times of transition, there were insufficient supports and services in place for seniors with dementia. In the case of falls or emergency situations, families and care partners felt staff should accompany their family member to and from hospital, as people with dementia, much less those in a crisis situation, cannot be relied to speak for themselves. Staffing: While people were quick to report problems within emergency rooms, long term care, hospitals and the organizations that assess and manage health care services, they were just a quick to realize, a large reason these gaps happen is a lack of staffing. Quote: “I don’t believe they have enough staff in the nursing home. They can’t get to know the patient because they have too many patients. There are so many patients that need assistance. On my husband’s floor the girls are running ragged. It is not their fault. It is the government’s fault,” said a wife. The lived experience network also recognized the case loads of CCAC Case Managers and Geriatric Mental Health Outreach staff as being too large and thus unmanageable. The words: “running off their feet” was a common phrase used to describe PSW’s in long term care homes, emergency room and hospital staff. “No wonder they don’t care,” said a wife. “They don’t have time to care.”
There needs to be better education when it comes to dementia,” was a common statement in the lived e

There needs to be better education when it comes to dementia,” was a common statement in the lived experience conversations. But, when you put all the conversations together, it was more than just education they were requesting, it was a broader base of knowledge and skill in many areas of elder care and society as a whole.
Examples that Surfaced of this Theme:

Primary Care: The family physician was the first point of c

Examples that Surfaced of this Theme: Primary Care: The family physician was the first point of contact for most people and often an area where a lack of knowledge and skill or alternatively, the presence of it made a huge difference in the lives of those affected by dementia and their care partners. Scenario: It was during a lived experience conversation at an Alzheimer Society support group where this point was most dramatically demonstrated. A daughter and mother had just come to an Alzheimer’s Society group meeting for the first time. They hadn’t stopped crying since they arrived. They shared a four year journey of reaching out to a family physician who had dismissed their countless requests to have their husband/father assessed. “He’s just getting old, that’s normal,” they had been told. Now he was in crisis, they had just received a diagnoses and they didn’t know where to begin. Praise: How different their story was than several others who had received care from pro-active, knowledgeable doctors who were quick to refer to Geriatric Mental Health, partner with others, had knowledge of the latest treatments and referred patients to local support systems. Another daughter reported if it wasn’t for her family doctor she’d have had to place her father in LTC two years earlier. Quotes: “My GP was so great. Dad wasn’t sleeping and I was just going crazy. I just had to phone him and he really “listened” to me. He knew what changes to make and never brushed me off. Dad’s behaviours changed because of him we were able to carry on.” Another spouse with a very young husband with dementia shared of how their care situation “really turned a corner” improving dramatically when they were assigned a new physician. In primary care, this knowledge and skill made all the difference in whether or not a person received quality care. Fortunately, this report would indicate things are improving. “Interns and doctors have a much broader picture today. They are sharing information and are more collaborative. Things were much better for my husband than my father. The public is also getting smarter and more informed,” said a wife. Personal Support Worker Education: While families were quick to praise the wonderful work and skill of their personal support workers. Many were concerned that those who were newly graduated were not receiving enough training specific to dementia and tips for dealing with subsequent behaviours. One wife often gets called by her LTC home to assist in bathing her husband. Quote:“There’s a couple of girls there that are good with him, but the younger PSW’s don’t have the experience to convince him to have a shower,” she says. Family members with parents in home care also reported stories where PSWs didn’t seem to have a strong enough knowledge of dementia to know how to re-direct or guide them to do things they needed to do (like wear their hearing aids, take their medication brush their teeth or eat their meals.) One daughter reported a PSW felt they were being mean by making her father go to the Adult Day program when he resisted she let him stay home. “What she didn’t realize is that meant Dad didn’t eat today,” she said. Enough Training? In general, many families question how a position with such (growing) responsibility can only require a short duration of schooling (unlike DSW, CYW and ECE programs that are two years or longer). “The entry positions (like that of Personal Support Workers) are often seen as entry level positions instead of high end client touch points,” stated a friend. Emergency Rooms were described as an area where the need for knowledge and skills specific to dementia were most present. Not only the staff and volunteers but the whole design and physical environment is not equipped or knowledgeable to deal with behaviours like wandering, aggression, passive aggression, hoarding etc. Many in the lived experience network felt more dementia knowledge and awareness would help to diffuse difficult situations and keep issues from escalating. The General Public: Many people within the lived experience network wished the general public had more knowledge and skill about dementia and felt this would make their loads much lighter. Families reported constantly having to be one step ahead of the person they were caring for, especially when they were still living in their homes. Interactions with grocery stores, banks, landlords, taxi and bus drivers had very positive or negative consequences based on whether the people assisting had a little sensitivity and knowledge about dementia. Family members also suggested that all family doctor’s offices should provide information sheets, pamphlets, and contact information for services like CCAC, Retirement Homes, VON etc. as well as simple caregiving booklets like the “By Us for Us” guides and “Shifting Focus”.   Assessments: A large area of frustration for many lived experience persons was this sense that they were unable to pass on the knowledge they had about their parents/spouses/friends to the people who were assessing them. It was often difficult to portray information to doctors (in the presence of their partner or parent) and important life observations and patterns of behaviour were not included in capacity assessments regarding their need for long term care. Quote: “In order to place them they need to be deemed incompetent, but whether it was CCAC, a geriatric team or a doctor, Mom could really rally and fake it. They really need to listen to families more or they miss real signs and issues. They need to ask concrete things too – like has there been a fire lately?” says a daughter. Guilt and Sense of Responsibility: All assessments, whether they are to keep someone’s licence or change a medication were felt to be not broad enough to grasp all the background knowledge needed to make an informed decision. This was something that really bothered them because as care partners they bore the responsibility (and guilt) for this information and their inability to convey it. Medications and Substitute Decision Making: Giving informed consent was another issue that came up in our conversations. People reported that although for the most part they did trust the doctors prescribing the medications, they really did not feel they were given enough information (in an understandable manner) to make informed decisions. They reported feeling this way most of the time when it came to having to be substitute decision makers. This knowledge gap made it difficult for healthcare and service providers to communicate so care partners could understand. Quote: “Instead of asking us if we have any questions, tell us what questions we should be asking and why,” said a wife. Praise: Geriatric Psychiatrist and Geriatric Outreach Case Managers were credited as having knowledge and skill regarding the treatment of persons with responsive behaviours all across the region. People stated they felt rescued when they finally found themselves in their care. Families reported being listened to, supported and seeing a vast improvement in the responsive behaviours, quality of life and health of the person with dementia. The main problem was how long it look for them to learn about and access this care. In reference to her husband’s geriatric psychiatrist, a woman stated, “He was the best thing that happened to us. He sat and talked to my husband and then to me. He gave me so much time, encouragement and understanding.” “They really saved us,” stated another wife. BSO: Praise was also extended toward Behavioural Support Ontario Mobile Response Teams supporting persons in long term care homes. A daughter shared a story of her mother with whom she lives, going to a LTC for two weeks of respite. Despite being fairly calm at home, her mother became aggressive, attacked her roommate and the police had to be called. The BSO Mobile Response Team was brought in. Scenerio/Quote: Her mother was moved to a private room and according to her daughter, “They didn’t just give her too many drugs, they talked to her and worked with her behaviours to calm her down.” She was able to stay for the entire respite time and the daughter reported feeling supported and ready to take her mother back into their home again. A husband also shared how he had not been able to visit his wife in long term care for several weeks after her admission. Terrified, she would cling to everyone around her begging to go home. After being shadowed for a week by the BSO Mobile Response Team, solutions had been found that allowed him to visit his wife regularly without any emotional responses to his coming and leaving her. “I don’t know what they did, but it worked!” he said.
The final theme that arose in the lived experience conversations as a priority for families and care

The final theme that arose in the lived experience conversations as a priority for families and care partners was the need for care and compassion to be extended to them while accepting services and supports – without being made to feel a burden.
Examples that Surfaced:

Care partners and families are traumatized: One of the most shocking thin

Examples that Surfaced: Care partners and families are traumatized: One of the most shocking things in this interview process was how traumatized family members and care partners are - both while in the process of being care partners and even years after. On more than one occasion the same people who could calmly share the story of their spouse’s passing or their long journey caring for a parent who died of cancer, would break down into tears while describing a long passed incident that happened in an emergency room or recollecting examples of responsive behaviours their parents or partners had displayed. This population feels powerless, full of guilt, regret and as though no one has heard them, seen them or cared for them. The weight of the responsibility they carry and the lack of support has actually left people damaged. Feeling resented: People within the lived experience network felt the need for services to be provided with care and compassion, meaning those services were provided without making the client and their families feel like they were a burden or that providers resented their presence. Family members and care partners themselves, reported feeling “like a burden” more often than not. System Stressed: Responses from the lived experience conversations indicate one of the biggest reasons for this reaction is because (as this report has demonstrated) this is a system that is particularly stressed. Hospitals, emergency rooms, long term care and respite services that exist today, for the most part, have stayed the same – but the demographic has changed. The system is being asked to serve in ways they are not designed to do – sadly, that stress is being passed onto the users of the system – and in the case, to vulnerable seniors and their families and care partners. Hospitals and seniors: Numerous emotional stories were shared by families and care partners where they experienced resentment while receiving hospital care. Alternative level of care beds are filled to capacity creating a hostile environment for patients and family members while they must stay in hospital waiting to be placed in LTC homes. Instead of a care plan, there is a sense of urgency to rush patients along, leaving gaps in diagnosing acute care needs like delirium. Quote: “It was terrible, to be so desperate for help and so dependent on people that so obviously didn’t want you there,” said a son-in-law. Although, there was high praise for the nurses and staff providing care, families reported feeling uninformed, unwanted, helpless and even bullied to make decisions without all the information. “They are paid for illness, not for wellness,” stated a wife. “We weren’t getting better and it was not a secret they wanted us out of there as soon as possible.” Short Term Respite Care: Due to the shortage of respite care beds and the fact that they are often housed in already overly-busy long term care homes, this was another area where families felt resented for needing and receiving services. This experience was reported multiple times and was a very emotionally charged issue for persons in the lived experience network. A wife, receiving treatment for her own life threatening health issue, reported this hostility when she was forced to place her husband in a short term respite care. Quotes: “They didn’t want him there and made it very clear that they were caring for him under duress,” she said. When making an off the cuff comment that her husband would be back in a few months, a staff replied “We’re sure not looking forward to that.” The comment and the overall feeling from staff left the woman deeply wounded and depressed. “They keep calling and phoning to tell you he is misbehaving. Every time you got in they tell how you bad he is, hoping you’ll take him out, “she stated. While she recognized how difficult this was for the staff and services that were not designed to care for an individual with such responsive behaviours, the stress and resentment was handed back to a very sick and weary individual Several spouses and children reported short term respite providers calling them when their spouse or parent was wandering or being disruptive – even requesting them to come and take them home, assist with their personal care or to help calm them down. “Aren’t these behaviours the reason we are seeking respite in the first place?” asked a wife. “They would call and make you feel guilty, like you weren’t doing your job….can’t you come and get him?” said another wife. “It takes a lot of effort to admit that you need help and can’t handle them anymore, because you want to do it all. So, you put them in respite or LTC and think, ‘Ok, now he’s going to be taken care of,’ and instead they are calling you for help. It is a very difficult situation,” said another wife. Held off Getting help – now in Crisis: Families reported that they were encouraged by CCAC to hold off putting the people in their care in long term care by offering them programs to help support them in the home, but when they reached out for those services, they were not only difficult to find (long waiting lists) but offered with reluctance and resentment. Penalized: Another observation that arose several times was the sense that family members that make difficult sacrifices (often to a breaking point) to care for their parents and spouses while awaiting long term care are penalized. Quotes: “I feel we have been penalized – moving backward on the list because of us caring for our father. It changes all the time depending on crisis and what constitutes a crisis seems pretty subjective,” said a daughter. Many members mentioned having to quit their jobs and hire expensive private home care providers only to end up feeling punished because now their need was not as great. “Do I have to lie? Do I have to let my father fall down the stairs to get him what he needs? I’m at the end of my rope,” said a tearful daughter battling her own health problems. “People say, ‘well, the families should be looking after their parents,’ but they don’t understand the complexity of what they are saying. I can’t keep my father safe. These type of comments from the uninformed are just not helping – they just leave us feeling even more alone,” says a wife.
Feed Back: I invite everyone to contact me with any feedback you would like to share regarding these

Feed Back: I invite everyone to contact me with any feedback you would like to share regarding these initial findings and key themes that surfaced in the Lived Experience Network Conversations. 1. Did these priorities resonate with you? 2. Did I miss anything? 3. Do you have anything to add to these findings that should be added to the findings and would assist us in creating an Action Plan for Change?
Closing Thoughts:
Whether or not we can make sweeping systemic changes, it is essential to ask ours

Closing Thoughts: Whether or not we can make sweeping systemic changes, it is essential to ask ourselves, “How are we doing at respecting the dignity of the people we serve?” “What areas do we need to work on to make our communication better?” “What staff and services should we be advocating for and where do we need to improve education and sharing of knowledge and information?” And finally, “Do we make people feel resented for the care we provide or do we show care and compassion to the families we serve?” Asking ourselves these questions may be the beginning of changes and in many cases it will allow us to celebrate where we really are doing it right! There are many wonderful, capable and caring people caring for seniors in South Eastern Ontario. In as much as the quotes and scenarios highlighted difficult situations, many people mentioned examples of true caring and compassion. With a little understanding of what our lived experience population needs, real, intentional change can and will take place.