Lianne: So the most important thing for me was for the staff to know who my dad was prior to moving into that long-term care home. I needed them to know that my dad was a fun-loving, caring, soft-spoken man and not the man with the disease. Jay: That's Liane Pelissier. Her dad, who was living with dementia needed to go into long-term care. Liane struggled through that transition process and she's here to share some hard-earned wisdom. Allison: Welcome to Defy Dementia. Podcast for anyone who has a brain. Jay: Defy Dementia is all about living in ways that keep your brain healthy and reduce your risk of dementia, because dementia is not predestined by our genes. Genetics can play a role but lifestyle risk factors like social isolation, stress, and diminished wellbeing may also have a significant impact. Allison: And according to the latest and best evidence, scientists are now saying that if we make healthy changes to those lifestyle risk factors, we could reduce dementia cases worldwide by at least 45%. Jay: Managing risk factors is a big part of Defy Dementia, but today, we're branching out and talking about something very important, transitioning a person living with dementia to long-term care. Allison: I'm Allison Sekuler, President and Chief Scientist at the Baycrest Academy for Research and Education, and at the Center for Aging and Brain Health Innovation. Jay: I'm Jay Ingram. I'm a science journalist. I've had an interest in dementia for more than a quarter of a century. Allison: Join us as we defy dementia because you're never too young or too old to take care of your brain. Jay: If you're a caregiver, friend or a family member of a person who will be making the transition to long-term care, this show is for you. We have some key points to help you build relationships with teams at long-term care homes to make the transition easier for everyone. Allison: And if you work in long-term care, this show is also for you. That's because we're going to be exploring a new way to partner with family caregivers. Jay: And make no mistake, even though we're talking about long-term care, we are still defying dementia. That's because the transition of someone to long-term care can have a huge impact on the wellbeing and cognitive health of caregivers. As we've been hearing throughout this series, maintaining our mental and cognitive health is key to reducing our dementia risk. Allison: Now, some of our listeners from abroad may not know about the long-term care situation here in Canada. Long-term care here is a system of homes primarily for older adults who have complex needs for health support and personal care, like help getting meals or getting dressed. Jay: According to the Canadian Institute for Health Information, most Canadians who are living with dementia are living at home, about 61%. While the remaining 39% live in long-term care. Allison: And generally speaking, because of a growing, aging population and funding constraints, there are huge waiting lists for spots at Canadian long-term care homes. And in many, many cases, people living with dementia are only admitted when symptoms become severe or when it becomes demonstrably impossible to care for them at home. Jay: And that means that many transitions happen quickly and in the midst of crisis and strong emotions. It can be hard on the person living with dementia and deeply agonizing for their caregivers. And those caregivers are the focus of this episode. Allison: Later on the show, we'll focus on a movement trying to change the culture in long-term care by focusing more on caregivers. Jay: But first, a long-term care transition story that co-stars Elvis Presley. Allison: Liane Pelissier is a 57-year-old who lives in Sudbury, Ontario. She's here to share the story of her dad's transition to long-term care. Her dad, Dennis, was an accountant and a musician. He was diagnosed with vascular dementia in 2015. Liane's mom cared for him at home, but in 2016, behavior changes necessitated a move to long-term care. Dennis passed away in 2018. What you need to know about Liane is that she was not a typical family caregiver. At the time of her dad's diagnosis, she had been working in long-term care for over a decade, and as a social worker, she was helping new residents move in and advising families throughout the entire transition process. Now, you might think that all that experience prepared her for her dad's transition. Well, we'll let Liane tell you that story. Liane is now a client service manager at Family Councils Ontario. That's an organization that supports family caregivers of people living in long-term care homes. She joins us from Sudbury. Liane, thank you for helping us defy dementia. Lianne: Thank you, Allison. It's a pleasure to be here. Allison: First off, I have to say, we're really sorry for the loss of your dad. Before his dementia diagnosis, what kind of person was he? Lianne: My dad was a very loving, soft-spoken, fun man who absolutely loved his family. Music was very important to him and important in his life. As you said, he was a musician. He played in a band for 25 years and he was just my world. Allison: And what sort of situation necessitated him to enter long-term care? Lianne: So when he was diagnosed with his vascular dementia, he had behavior changes and temperament changes, which made it very difficult to care for him at home. The behavior changes triggered some physical altercations, which was not my dad at all. So it was very hard to manage. Jay: Liane, can you take us back to the actual transition to long-term care? What was it like for you and did your experience working in long-term care prepare you adequately for it? Lianne: That's a really good question. So I was prepared in terms of what to expect of the paperwork and what would happen on that move-in day, but I was not prepared for the emotional impact. I was derailed and I felt so lost on that move-in day, even though I knew everything by heart because that was my job. But to feel that emotion. I couldn’t believe this was happening, my dad's entering into a long-term care home, my mom's still living at home, we were going to have to sell the family home. It caught me so off guard such that I had to sit in the parking lot as I cried for half an hour before I could even leave my dad's long-term care home to go back to work. Jay: So you were already working in long-term care, did any of that experience helped you? Lianne: Well, yes. Some of my knowledge, like the gentle persuasive approach, helped with communicating with my dad and to teach my mom and my family on how to communicate with him. Knowing how long-term care home runs also helped. I was familiar with all of that, so that was definitely helpful to be in the know for those types of situations. Allison: So at the start of your dad's transition to long-term care, how did you try to help the staff along the way? Lianne: So the most important thing for me was for the staff to know who my dad was prior to moving him into that long-term care home. I needed them to know that my dad was a fun-loving, caring, soft-spoken man and not the man with the disease. And that was really important to me that they knew everything about him prior to the disease taking over. Allison: And did that actually work out? Lianne: It did in certain situations, yes. I had many conversations with the home staff about what my dad liked, what was important to him. Music was a huge part of his life so it was important to incorporate music in his care plan to be able to minimize the triggers and keep him in a happy place, so to speak. And so, this is where Elvis Presley comes in. My dad was a huge Elvis Presley fan, so we had brought in a CD player with Elvis CDs. The staff were instructed to play these CDs when they came in to provide care to my dad and dance with him, play air guitars so that it would really help him be in the moment so that they could provide care. Allison: And did that plan work out? Lianne: Not all the time. So sometimes, you get part-time staff or not regular staff coming in that doesn't necessarily know my dad or his care plan. Sometimes, staff did not always play the CDs and were very structured when they came to provide my dad care. Especially when it came to personal care, like dressing and undressing - My dad was very, very personal and that was something that he didn't adjust well to. So it was really important for the music to be played and get him in that mode prior to providing care. But it wasn't always successful with all the staff. Jay: What sort of emotional toll did that have on you? Lianne: It was very difficult because I was always hopeful when I would come in to visit my dad that he would be in good spirits and that it would be a good visit. And the times when I came in when it was not, if for instance, the care plan was unfollowed and the Elvis music wasn't on and my dad was stressed, it was crushing on me. Seeing him in that type of mood and that situation really took a toll on me. It was so hard to see and it was heartbreaking because I just knew that wasn't my dad and that wasn't his typical reaction. So it was hard to watch. Jay: How did you try to improve the situation? Lianne: So again, talking with staff. I would always check in with the staff before I went into my dad's room to see how he was doing, how his day was, if there were any incidents, and then talk them through certain things that they could try and do to keep my dad calm, engaged and in the moment. Jay: Did the emotional toll gradually recede? Were you able to do anything specifically to address it? Lianne: So it definitely was a roller coaster of emotions. Some days were awesome visits with my dad and we had a great time. He was in great spirits and I was able to take him out and do things. And other days were really, really bad. And those days were difficult on the emotions, and I think that's what it is with dementia. You never know what you're going to get. It's ever-changing : the behaviors, what they remember. Being in the moment is forever changing. So my motto was, celebrate the good moments and just talk it out when there are bad moments. And there were a lot of tears. I definitely cried a lot, but I was able to talk to my family, talk to my mom, talk to my coworkers when I felt really stressed and bad about what was happening to my dad during his disease progression. Allison: The idea of living in the moment and taking it moment by moment is such great advice. Communicating with others is also great advice. Is there any other advice you'd have for caregivers who might be at the cusp of transitioning a loved one into long-term care? Lianne: Yes. Definitely the main thing is to communicate, communicate, communicate. So continue to talk to the staff and really let them know everything they need to know about your loved one, about that person and who they were prior to the diagnosis. Because it's so important to be able to interact with your loved one and to find things that will de-escalate them if there is an escalation in behaviors, like something that they can connect to. And I think that would really help families feel more connected with the staff and their loved one when it comes to providing that person centered care. Allison: Based on your personal experience with your dad, what advice would you have for those long-term care staff? Lianne: Again, keep connecting with the family members and ask them questions. Share with them how that resident is doing on a particular day. I loved it when they said, "Oh, your dad was playing air guitar and he was greeting people in the hall." That made me so happy because I knew that my dad was engaging and liked interacting with others. And that's important for family members to hear from staff what kind of day their loved one is having. Jay: Your story makes me think of a potential situation that must arise. Your father was a gentle man, but as his dementia progressed, he became different in some ways. And yet, when you took him to long-term care, you said, "This is my father, he's a gentle man, he loves music," and so on. [I imagine that there may be times when care team members at the long-term care home doubt family members' descriptions of a resident if the resident appears different from how they're described]. Does that ever come up? Lianne: Absolutely. And it's unfortunate that it does. [But] those workers, all they know is the person that's in front of them, the person that they're looking after. So it does take that continued communication. I brought in pictures of my dad playing in the band. I had that in his room. Anything that could connect my dad to his old life before the disease took over, I had that displayed in his room. And I would communicate that with the staff just so that they eventually can know that although my dad is being difficult, this is not who he is. This is the disease taking over, and what can we do to work together to minimize those escalations? But yes, it definitely happened where all the staff knew was my dad's escalations and my dad's triggers when in the moment. Allison: How did your experience with your dad's long-term care shape how you do your job today? Lianne: It had a huge impact and shift on how I deal with family members. I worked another five years in long-term care before I moved to Family Councils Ontario, and it totally changed the way I interacted with family members. I was so in tune and aware of that emotional impact that I made sure that family members were okay. We knew the resident was going to be okay, we had everything in place for the resident, but I needed to ensure [that family members were okay too]. Because maybe I wouldn't have cried in the parking lot in my car for half an hour if someone had asked me, "Liane, are you okay with all this? Do you need anything?". I think that's what shifted for me, to better support family members, is that empathy, that hug, that reach out. And just to be able to talk about it and support them through that transition because the emotional impact is so real and overwhelming that it's important to check in with those caregivers. Allison: Liane, thanks so much for all your contributions. I think that they're going to be really inspiring both for people who work in long-term care and for the loved ones of people living in long-term care. Lianne: Thank you, Allison. I really appreciated the opportunity. Allison: Liane Pelissier was a caregiver to her father and is currently a client service manager at Family Councils Ontario. She was a lead writer on the transition guidebook for family caregivers published by Family Councils Ontario. We'll have a link to that resource on our website. Liane joined us from Sudbury. Jay: Our next guest has been listening to Liane. Dr. Jasneet Parmar is a care of the elderly physician. She's also a professor in the Department of Family Medicine at the University of Alberta. Jasneet is here because she's been researching how to support family caregivers in the healthcare system and how to improve care to people living in home care and long-term care. To that end, she and her University of Alberta colleagues have researched and developed an education program called Caregiver Centred Care, and you're going to hear all about it. On top of this research, Jasneet also serves on the front line. She provides assessments to homebound older adults. She also helps transition people to long-term care working directly with their caregivers. Jasneet joins us from Edmonton. Jasneet, thank you very much for helping us defy dementia. Jasneet: Thank you for the opportunity. Jay: What struck you, Jasneet, about Liane's story? Jasneet: Listening to Liane reminded me of my own experience of having to relocate my father into long-term care. [The emotional distress that Liane was experiencing in the parking lot], is what I see in family caregivers every day when I'm talking to them about the need for moving the person that they are caring for into a higher level of care. This emotional distress, this overwhelming sense, which includes guilt, sadness, fear, anxiety comes from a place of caregivers going through this tug of war in their hearts. They want it, but at the same time, they don't want it. They recognize that the person they're caring for does need a setting that can provide the right kind of care for them. However, this decision is not easy and it comes with a lot of emotional complexity. And that's what I heard in Liane's voice, and that's [why]... I can literally see her sitting in the car and experiencing it. Allison: You've taken a different approach to working with caregivers. Can you explain to us a little bit more what is caregiver-centered care? Jasneet: May I take a moment to define family caregivers? Family caregivers can be family members, they can be friends, they can be neighbors, or they can be chosen family. These are those people who actually provide care. These are those who are helping the care recipients [to] remain connected, [to] retain their identity. And this becomes very important when these very people transition into a high level of care, because these caregivers feel responsible for making sure that the care recipient receives adequate care, but they are [also] the voice of that person. They can express that person's desires and needs and provide the information that is needed by the healthcare team to address their needs. Allison: So how can the healthcare team take advantage of that? This is where caregiver-centered care comes in, right? Jasneet: So caregiver-centered care basically is person-centered care focused on family caregivers. This approach helps healthcare providers to develop collaborative relationships with family caregivers. [This] allows the [healthcare team] to meaningfully engage family caregivers and partners in care. This approach brings family caregivers onto the healthcare team, so to speak. And what it does is this engagement helps the family caregivers well-being because now, they have an opportunity to give information, to receive information, get involved in care planning and decision-making, express their needs and get support. At the same time, this engagement with family caregivers actually helps improve our residents' quality of care, quality of life. It reduces unnecessary interventions, investigations, unnecessary hospitalizations and emergency room visits. Allison: So it's win-win-win [situation]. Jasneet: Yes, and the third win is the win for the healthcare providers. This proactive engagement with family caregivers then reduces our workload and increase, of course, having good relationship with people, whether it's with your own team members, with your friends, your family or family caregivers. [It] gives you joy at work, increases your satisfaction. And almost everyone I have worked with now who's taken caregiver-centered care approach or put it into play, is enjoying their role because now, they find that their own joy at work has increased. They're finding these relationships rewarding and their work more meaningful. Jay: Now, we know you've been working on caregiver-centered care for more than 10 years now. How did it actually come to be? Jasneet: The short story is that I became a caregiver myself. So my parents immigrated from India and my dad was very frail. We made, of course, the decision to care for him. We kept him at home for almost 10 years. We provided all kinds of care. Never once took him to the hospital other than one visit to the emergency room until it became very heavy to care for him. He fell, had a compression fracture, [we] took him to acute care, and then he went into long-term care. And here I was, head of the elderly physician, experienced in looking after the older adult, I had been in the system since 1992, and had developed all these geriatric programming across our zone, now engaged with healthcare providers in caring for an older person in my family. And I encountered all kinds of barriers and challenges to the point that I became burnt out within the first year of these interactions. At the same time, I also became the medical lead for home care in our zone. And I heard from my staff how important these family caregivers were in supporting the people that were living at home. Very quickly, when I started to look into this matter, I found there's actually nothing in the healthcare system that trains us to actually engage, partner or support family caregivers. [We did a lot of work to begin with, various consultation engagement, collaborative symposia, et cetera, [and] we realized that there were certain skills that were needed to train healthcare providers to actually provide caregiver-centered care for this approach. And they were identification of caregivers, communicating with them in a timely and a responsive manner, partnering with them in care planning and decision-making, assessing their needs, navigating the systems of care to address those needs, and changing the culture and context of care. We have spent far too much time trying to build a better family caregiver. A lot of work was going on research and initiatives where we were trying to foster resilience in family caregivers by teaching them, training them to be a better caregiver. And it was not helping. The caregiver stress and distress has been increasing exponentially. What we learned in those engagement sessions - 60 organizations and 400 stakeholders were involved - [is] basically, [that we] got to build a better system to support family caregivers. Jay: Jasneet, it makes so much sense. And Caregiver Centered Care is relatively new. Can you give us a bit of an update on how it's working in Edmonton? Who's coached and what sort of results do you see? Jasneet: 13 key organizations that run continuing care centers in Alberta have taken on this education. We are in the throes of it, and they run numerous sites. So close to 40 sites are taking on this education. Within a year, we are looking at a vast number of healthcare providers within these sites to take on this education, and we are not stopping there. Allison: Jasneet, Caregiver Centered Care is a new idea, so most Canadians aren't really benefiting from it yet. But based on your work, do you have any advice for family caregivers when they are transitioning their loved ones into long-term care? Jasneet: To family caregivers, I would say, identify yourselves. The healthcare team needs to know who you are and that you are a source of information. You may or may not be able to provide input right off the bat, but you've got to let them know that you're available when needed, and be ready to contribute. Please know they need your information. And there is a lot of complexity in making decisions. And nothing is more valuable than a family caregiver telling me this is what that person would have wanted. And one other thing I would suggest to family caregivers, is, also to express your needs. It's okay to ask for support for yourself. For example, if you are feeling stressed, if you are feeling depressed, look for emotional support. Healthcare providers and other support services that may or may not be within the healthcare system are available to provide emotional support. If you have other needs, you may have financial concerns. It's okay to let them know that you are feeling financially trapped in this move. And one other thing, if you're not satisfied with their care, proactively, let them know what your concerns are. Don't wait too long. Jay: Those are really good, really important pieces of advice. And contained within some of them, I'm guessing, is a responsibility on the part of the healthcare team. So we asked you just now for advice for family caregivers. What about for the members of the healthcare team? Jasneet: I'm so glad you asked that question because we really have to get our healthcare teams to become responsive and adopt this caregiver-centered approach. I don't know what's stopping us, because there's so much benefit from engaging family caregivers. And there's so much evidence to show that it improves not just family caregivers' lives and our residents' quality of care but It helps our staff. [It] actually reduces workload and increases staff satisfaction, and it helps the healthcare system. When you engage family caregivers, it reduces healthcare costs. In this caregiver-centered approach, we are saying to the healthcare teams, recognize the family caregivers, document who the family caregivers are in your documentation system. Engage with them regularly, actively listen to the information they provide, actively engage them in shared decision-making. Basically, partner with them and don't forget to thank them for what they have done previously and they're continuing to do now. And the second question is, what can we do to help you? Do you have anything that you need that we could support? Jay: Jasneet, you're helping caregivers right now, yourself, with home care and also long-term care placement. How are you personally using caregiver-centered care in that work? Jasneet: Jay, you previously asked me what got me onto this journey. It was 2013 when I thought I was really proactive, engaging the families of my seniors, and I thought I was doing caregiver-centered care. Till the director of then, Caregivers Alberta said to me, "Have you ever asked a caregiver how they're doing?" That was an aha moment for me. Now, Jay, I make it a regular practice and I thank them. I acknowledge them, basically showing respect, honoring them. I'm always looking at their needs from their lens. This is now just literally [an] integral [part of what i do]. And boy, is it rewarding. Till today, I've never had a caregiver - and I've been doing this approach for a few years - who doesn't get emotional with that thank you. And some of them cry because finally, somebody's asked them, "What do you need to provide care?" Jay: Jasneet, I think Alison and I would agree that we wish you all the success in the world to bring Caregiver Centered Care beyond Edmonton, beyond Alberta as far as you possibly can. Thank you very much for joining us on Defy Dementia. Jasneet: Thank you very much. Jay: Dr. Jasneet Parmar is a care of the elderly physician and a professor in the Department of Family Medicine at the University of Alberta. She joined us from Edmonton. We will have some Caregiver Centered Care resources for you on our website and in the show notes. Allison: So some really interesting guests again today, Jay. What stood out for you? Jay: There were a couple of things that connected across the two interviews. First, Liane mentioned bringing in pictures of her father to put on the table beside his bed, which added this really crucial, I think, little detail about his life before anyone on the care team working at the long-term care home would know anything about. And it's a small thing, right? Bring in a little picture, put it on the table, and yet, it informs everybody who's involved in her father's care. And it struck me so much because in the midst of the emotion that both of our interviewees mentioned and how difficult it is, that's not going to be easy to remember. And so I took from that [is to] think about having everybody involved. Think about the environment that the person you're caring for is in and how does that work for them and how does it work for the rest of the people who are involved in care? And that connects so directly to everything Jasneet said, that if it's not all teamwork, those sort of things might slip through the cracks and the care won't be as good as it could have been. I just thought those were two important perspectives on this story. What about you? Allison: Well, you mentioned the team concept already, and I think for me, that's what really hit home. How important it is to be thinking about everybody as part of that partnership, part of that team. It includes the family caregivers, it includes the people who are living with dementia themselves. It includes the healthcare providers. Everybody is part of that team. And when we bring everyone together that way, and we include the family caregivers in particular, it changes the whole dynamic and it improves everybody's life. And it also really struck me how both Jasneet and Liane mentioned that just the simple question asking, "How are you?" To a family caregiver [can] evoke so much emotion. it evokes so much meaning for people, and it changed just the tone of how people were interacting and it changed the nature of the care. And I think it ends up not only helping the family caregiver do better, but it also helps the resident or the person in long-term care, and it helps the healthcare providers themselves. Jay: It reminds me of a couple of situations I've been involved in when I've been helping transition people in my family. When you look back in the context of what we've heard today, I didn't really have much to do with the other members of the care team. I probably said, "Good morning, how are you doing?" They would say the same thing when I came in and I'd say, "Goodbye, see you tomorrow," when I left. And it's got to be a lot better than that. To find out more about how we can all boost brain health and reduce the risk of dementia or slow its progression, please visit us at defydementia.org. There, you can check out other episodes of the podcast as well as our videos, infographics, and other resources. Allison: Our podcast production team is Rosanne Aleong and Sylvain Dubroqua. Our writer and chase producer is Ben Schaub. Production is by Podtechs. Music is by Steve Dodd. And our cover art is by Amanda Forbis and Wendy Tilby. Jay: Special thanks to Danielle Cowan of the Ontario Caregiver Association and Dr. Sharon Anderson at the University of Alberta for their help. We'd also like to acknowledge the Ontario Centers for Learning, Research and Innovation in long-term care at Baycrest who co-sponsored this episode. Allison: We'd also like to thank the funders of this podcast, the Slaight Family Foundation, as well as the Center for Aging and Brain Health Innovation and Baycrest. And we really appreciate your support too. So hit that subscribe button for Defy Dementia wherever you get your podcasts. And please, don't forget to leave a like, a comment or maybe even a five-star review. Jay: Coming up on Defy Dementia, two fascinating shows. We have the cardiovascular episode, a surprising exploration of how our hearts, veins, and arteries are key to our cognitive health and also, to reducing our risk for dementia. And on a special episode, we'll take a deep look at a hidden and unrecognized population facing increased dementia risk, adults with Down Syndrome and other developmental disabilities and their caregivers too. I'm Jay Ingram. Allison: And I'm Alison Sekuler. Thank you for listening to Defy Dementia. And don't ever forget, you're never too young or too old to take care of your brain.