Katherine: So when she would ask me if he had died, I would say yes. And as we all know with people with dementia, when you answer a question for them and they hear devastating news, it's as if they've heard it for the first time. Jay: That's Catherine Mulvale. Her mom is living with dementia, and for a time, she would forget that her husband had died. Catherine would feel compelled to tell her mom the truth about that death again and again. You'll meet Catherine in a moment. Allison: Welcome to Defy Dementia, the podcast for anyone who has a brain. Jay: Defy Dementia is all about living in ways that keep our brains healthy and reduce our risk of dementia, because dementia is not predestined by your genes. Allison: Genetics can play a role, but lifestyle factors like unhealthy eating, stress, and social isolation are also crucial. Jay: And according to the very latest 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%, almost half of all dementia cases. Allison: Today on the show, lying for love, the ethics and benefits of compassionately reshaping the truth when communicating with a person living with dementia. 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 with both a personal and professional interest in dementia. Allison: So join us as we defy dementia, because you're never too young or too old to take care of your brain. Jay: When dementias like Alzheimer's progress, the brain's ability to store new memories and recall old ones deteriorates. People may forget really important things like who in the family has died. Allison: But telling them the truth to correct those misperceptions can be really painful and upsetting to people. So many caregivers choose to reshape the truth to spare their loved one that pain. But for many people, that feels like lying, and lying usually is frowned upon. And so that can generate powerful feelings of guilt and anguish. Jay: So how do we communicate with a loved one living with dementia to lessen their stress level and ours too? How do we balance truth and compassion? Allison: Today we're going to try to answer those questions. We have the help of guests who have some hard-won wisdom and experience. And the title of this episode is Lying for Love. Jay: Our first guest is Catherine Mulvale. She's 58 years old. She's a wife, mother of two, and caregiver to her mother, Anne, who was diagnosed with vascular dementia in 2019. Catherine's dad also had vascular dementia. Sadly, he died four years ago. Catherine is a business consultant to health charities, and before that, was executive director of several major national charities. Catherine Mulvale joins us to share her experience balancing truth and compassion. She's in Georgetown, Ontario. Catherine, welcome to Defy Dementia. Katherine: Thanks so much for having me. Jay: Tell us about your mom, Anne, well before dementia developed and how things changed after her diagnosis. Katherine: Sure. My mom is full of energy and optimism. She was very athletic. She was a fierce competitor, but would cheer very loudly and enthusiastically if anyone ever beat her in any sport. She taught me to see the beauty in the world around us and the people that fill it. She's still really very much that way. It's just the experiences that we have and the way that we communicate with each other [that] is very different [now]. I feel really lucky to have had her as my mom because she made me realize some really beautiful things about the world. Allison: So, this episode is all about balancing truth and compassion. Do you have a story that you can share with us about that? Katherine: Yeah. To give some background into [how I am] trying to manage when my mom asks really difficult questions and whether or not I would tell her the truth or if I would adjust the scenario a little bit [is] based in my childhood. So when I was about nine years old, I stole a ring from the neighbors across the street. When I came home, my mom noticed that I had the ring on my finger and said, "Did you steal that ring?" I said, "No, I didn't." Her reaction to my saying, "No, I didn't," because she knew for certain that I had stolen it, was so overwhelming that I would say it scarred me for life. She started crying and moved away from me. She was [very] upset about the lying. It took me a little bit of time to realize that that was what her discomfort was. This disappointment in me carried on for such a long time that it has resulted in my not being able to lie. So if someone asks me a [general] question, I can dance around the truth. But if someone asks me a specific question, I cannot lie. And that includes not being able to lie to my mom. That has changed a little bit [lately], but it was really problematic when she started asking questions about where my dad was. We were able to make things up and just placate her and move on. But she became very insistent at one point and [she wouldn't stop trying] to find out where he was. She would transition from saying, "Where is he? Why isn't he coming to see me?" to "Has he died?" At that point in time, she still had lots of moments of clarity where she was very mature, she understood her surroundings, she understood where she was, how things worked in her world. Naively I had hoped that she would continue to be my mom and to come back with [her] cognitive abilities. So when she would ask me if he had died, I would say yes. As we all know with people with dementia, when you answer a question for them and they hear devastating news, it's as if they've heard it for the first time. So anytime I said yes, my dad had died, in my mind I was going to provide the details that would make her feel better, that she was there, that he knew that she loved him, that she was with him until his last breath. But it wasn't comforting to her. It was devastating, and it was devastating every time that I told her. I, at the time, was not able to bring myself to tell her a lie because I remembered what had happened when I'd lied to her when I was a child and I didn't want that distrust to be relived. Jay: So it was difficult for you, like you couldn't lie, and yet it upset your mother. How did that eventually develop? Katherine: So, as her cognitive abilities continued to decline, it became easier for me to distract her. The first time that I actually said, "No, he hasn't died," I felt dirty and it was a terrible feeling for me, and yet it was a better experience for her. The first time that I said he was at a conference, she sort of seemed to accept that. And who was at the conference and how long was he going to be there, and the enthusiasm that she had thinking that he was going to come and see her again was overwhelming for me because it was a positive thing for her. But I just felt so horrible actually telling her a lie. As the cognition continues to decline, I can now tell her without any problem at all that he is away somewhere, anywhere and that he will be back sometime. In the last few weeks though, I've noticed when I go into her room, the picture of her and him together is now turned over and she rarely asks about him anymore. I had a sister who died about 20 years ago, and that was really devastating for my mom as well. So I wonder: is she filtering her experiences subconsciously [in] some way [such] that the things that cause her great pain [are] blocked away? Allison: So you mentioned when you [start] stretching the truth to make your mom feel better, you felt this guilt and anxiety. We do know stress and depression are recognized as risk factors for dementia, so do you have any sense of how that guilt and anxiety might [have] affected your own brain health? Katherine: The guilt and anxiety is absolutely alive and well. I think probably most people who take care of someone who's living with dementia. As we go through the experiences, the person that we love is changing, but we're changing as well. We try to resolve what the relationship has been in the past and then what it needs to be going forward. Because you really are reversing roles in some way, [even though] you're still the daughter of this wonderful person. As we move forward with the changes that she's having, I'm finding that I've learned what causes her pain and I've learned what makes her happy in this person that she is now. So I take cues from her on any given day because she's very different every day and sometimes every hour that I see her. But I take cues from her to know how much truth and how much fiction I can actually incorporate into the conversations that we've had. I think expectation is a dangerous thing because, again, you still have that parent-child relationship and you never give up hope that you are going to have the person that you used to know before. And there are good days and there are bad days, so you hope for good days. I've learned that if you go in with the expectation or trying to hype yourself up that it's going to be a good day, it's going to be a good conversation, you will often be disappointed. So rather than doing that, [I am telling myself]: "I have the next hour and a half that I'm going to spend with my mom, the woman that I've loved my entire life." If she's having a bad day, we'll try to make it better. If she's having a great day, we're going to have a wonderful time, but not to expect one or the other to happen. Because in every single visit, there are moments of pain and there are moments of joy, so I just try to focus on the [joyful ones]. Jay: Catherine, I'm sure there are many people listening to this for whom this is a new approach. You've mentioned that it's context dependent, it depends on how your mother is feeling. This may be a difficult question, but could you give us a quick example of, say, a recent interaction you had with her where you had to read the room or read her and then have a discussion? Katherine: Sure. Actually it happened just a few nights ago. I went in to visit her and she was sitting at the nurse's station. My mom was a teacher, my dad was a principal. And when you see someone in long-term care who's sitting at the nurse's station, it's like being in the principal's office, is that either she's upset or she's done something to upset someone else. So I walked in and I sat down and, "Hey mom, what are you doing? How come you're in here?" Her eyes were puffy and red and she said, "Oh, I'm so glad that you're here. Someone has stolen my car." This is a common theme with her. In this case, I chose to remind her that her license had been taken away when she'd had a heart attack and that my brother had sold the car for her. She actually asked him to sell the car. I'd learned from other experiences that if I told her that he sold the car and she told him to keep the money, her take on that now was that he had stolen the car and stolen her money. So now the way that I say it is that, "You're no longer allowed to drive. I'm your driver. You've got your personal limousine driver, and I will take you wherever you need to go. Your car has been sold, but we put all of the money in your account. So your money is there whenever you want to get it. If you want to go and get a new car, you let me know which kind you want and we'll go and get a new car." And then she just relaxed and we moved on to the next topic. Jay: Could I just ask you, some people have told me that if the patient they're visiting says something that, let's say, doesn't make sense, they will play along with it. And that may extend into a bit of a conversation about something that doesn't exist or didn't happen. Do you ever do that or not? And is that a recommended way to do it? Katherine: I absolutely do it now. I think I'm a pro at it. But that's been an acquired skill, I would say, because even a year ago, there's no way that I would've done it. I would've tried to make sure she understood what the context was, what the truth was, and tried to correct the situation and the understanding. Now it's tons of fun. Whatever she says, and sometimes it is absolutely bizarre and makes no sense at all, but we have these wonderful conversations that are full of fun. She directs them and I just follow her lead. It's actually really cool. Jay: Do you have any direct communication tips for people who are in the situation you just described? If this is just starting to happen, they're probably a little bit confused about how to deal with it. Are there tips that would help those people at least get going? Katherine: Yes. I think there are lots of tips that we can go with. One is let go of the need for you to be correct. You don't need to be correct. It doesn't matter anymore. Just let whatever the individual that you love, whatever they believe is true, let them believe it. It's fine. There's no harm in it. If you are going to adjust the truth, do it with kindness. This person that you have loved and still love, and still loves you, is lost. Anything that you can do to make their day, their moment, their world a little bit brighter and softer [is good], and hopefully making sense to them. Even if it doesn't make sense to you, go with it. Just let them have that. I think the final thing that I would advise people to keep in mind is to trust your instincts. As caregivers for people living with dementia, we make really big decisions. They affect people's mood, their lives, and how they are going to continue every day. The healthcare system knows the patient. We know the person. We have a history with them, we know what makes them happy, we know what makes them sad. We remember what their physical history has been. I think it's really important, as we advocate for the people we love, to make sure that we trust the love that we have, the information that we've gathered and sifted through that we can make good decisions for those that we love. Trust your instincts, it's really important. Jay: Well, Catherine, this has been incredibly valuable. I can't tell you how much we really appreciate you doing this. Thank you very much for joining us on Defy Dementia. Katherine: Thank you for having me. I think the work that you're doing is really important, that people need to hear from you and to understand what's happening. So thank you for doing the show. Jay: Catherine Mulvale is a caregiver and business consultant. She joined us from Georgetown, Ontario. Catherine recently launched a website for caregivers to share stories, advice and resources. It's called dementialove.org. We're honored that Defy Dementia is listed as one of those resources. We'll share a link in our show notes. Allison: Our next guest has been listening to Catherine. Ben Hartung is a registered nurse practicing in Alberta and works as a college nursing instructor. He's a certified gerontological nurse and a researcher, and his focus of study is communication with people who are living with dementia. He's a member of a small circle of specialists who study what is termed therapeutic lying. He's published several studies on that very topic. Ben Hartung joins us from Calgary. Ben, thank you for helping us defy dementia. Ben: Thank you for having me. I'm excited to be here. Allison: We, of course, want to hear your reaction to Catherine's story, but first we have to ask you, how did you become interested in this rarefied field of ethical lying? Ben: I think it really started with my grandma. My grandpa had dementia. [She] was a caregiver, and that was at the time that I was studying nursing. I always wanted to be a nurse. My mom is a nurse and I really wanted to be in that caring profession. As I watched my grandma provide care, I really saw the challenges that she experienced. Since then, I [have] continued my career. And when I was studying for my master's degree and doing my research, the topic of therapeutic lying came up and it was interesting. I looked at the research and I was like, "Whoa, there is a lot of information out here, but no one's talking about this." So since then I was able to do some more research and dive deeper into it. It's this area [that] no one talks about, but it seems to be happening, and that intrigued me. Jay: So Ben, Catherine Mulvale spoke about it when she talked to us. What struck you about her story? Ben: I think the big thing is just the challenge of being a family caregiver, navigating those complex situations where maybe your loved one is looking for someone that's deceased and the family caregiver has to respond and navigate that. Caregivers want to do the best they can, and sometimes you make decisions, say something, do something, and then you feel bad about it. And then that guilt is very real. I really feel for the family caregivers that are navigating these situations. Allison: Is Catherine's story typical? Ben: It's very typical. I've seen Catherine's story many times in my practice. Jay: Ben, So you've seen it many times in your practice. How widespread is this problem of people living with dementia being told painful truths, as Catherine told us, and then reliving shock, disbelief, and even grief? Ben: I think it's quite common. We should take a step back and look at why this is happening and what scenarios lead to people asking these difficult questions or looking for people that are deceased or looking for your car while you don't drive. People with dementia experience disorientation at times, so they might not be aware who they are, where they are, or what time it is. And then that disorientation, we sometimes call [it] time shifting. So often you feel as though now you are younger, maybe you're now a mother and you are looking for your children or maybe you're driving, but you are time shifting. Your disorientation doesn't really match your surroundings. So it becomes really distressing for the person living with dementia. And it can be really challenging. You can be physically looking for those car keys, searching the house. You could be searching for your child, your spouse. You could be going outside and risking, falling, injuring yourself. In those moments, caregivers need to respond in a kind, compassionate way, and it can be really challenging. One thing I like to think about is what is going through the mind of the person living with dementia during that moment. I don't know, but I can guess what might be happening. We've all had moments where we were children, maybe at the supermarket or an amusement park, [when] you were in a crowd and you lost your parents. You just get that sheer sense of panic. Or maybe you were the parent and you lost your child in the supermarket and that sheer sense of panic. Or some of us may have woken up late for a really important day of work and we need to get to the car to get to work. So that's the same emotional reaction that someone living with dementia can have when they are disorientated and they're experiencing that time shifting. Allison: It's funny because I've been in every single one of those situations that you just mentioned and there is that sense of panic. So when I am recognizing that in myself, it's almost like empathy building for what that person who I'm talking to is dealing with. And do you feel that putting yourself in that kind of situation helps in building that empathy so that you can have the conversations in a more constructive way? Ben: Yeah. It's important to empathize with what's going on because it is really challenging for the family caregiver, but it's also the caregiver who has to respond and they want to do the best thing for their loved one. They want to reduce that distress, reduce that panic, but sometimes caregivers don't have the tools or the knowledge to navigate those situations, so then [they] themselves might panic. They might do something or say something with the best intentions, but they feel wrong about it, and therefore that guilt can come out. I know Catherine mentioned that she felt really guilty, a visceral reaction when the first time she told her mom something that was not true. Even though it seemed to be beneficial to her mom, she still felt that guilt. And unfortunately, that's a very normal part of caregiving. Jay: Ben, if people are experiencing what Catherine experienced, that strong feeling of guilt, how can you deal with that? Are there some steps that a caregiver can take to alleviate that? Ben: Yes and no. Guilt is something that's always there. And when I talk about guilt with people, guilt comes from a place of caring. When we look at guilt in dementia care, it's when you feel as though you have an obligation to do something and then you are feeling bad about what you did. So I guess when we're thinking about guilt and caregiving and these kinds of scenarios, just know that you're doing your best. I think Catherine really said it [well]. [In the] end, [it]is the family caregivers [that] know what's best for their loved ones. They know the history and just having confidence that [what you did] might not have been perfect, but feeling as though you did your best. It won't get rid of the guilt, but it will help lessen it. Allison: It's interesting because you say guilt is when you feel bad for something that you did, but it might be the best possible thing that you could do. So I'm wondering, when you're thinking about balancing truth and compassion, are there any specific ethical guidelines that you and other experts would recommend? Ben: Yes. The ethical guidelines really focus on that your response needs to be in the best interest of the person living with dementia. If a family member chooses to use a lie, it needs to benefit their loved one. There are different ethical principles we think about when we're deciding if we're going to use a lie or not, and the research talks about both sides of it. So the ethical principle of consequentialism really focuses on the outcome [as] determining if what you decided to do was correct. So [in] Catherine's example, she used this ethical principle of consequentialism when she was deciding to tell her mom that her dad was at a conference versus that he had passed away. When she told her the truth, it turned out to be bad. It wasn't therapeutic for her mom. So when we think about the outcomes of what we're saying, we need to think [whether it] is in the best interest of the loved one. We also need to think about the awareness of a lie. When people have dementia, their cognition can fluctuate, their disorientation can fluctuate. So we need to really assess if that person is disorientated, what time era they're in, and what information might be true to them in that moment. Because we never want to get caught in a lie. We want to make sure that we are using information that could seem to be true for them in that moment. Then the third thing to think about is that a lie should be our last resort. We don't really want to be telling lies to our loved ones. We want to use other options and techniques before. So we can be validating their emotions, we can be distracting [or] we can be redirecting. And if those things don't work, then we could use a lie. Allison: [After you've tried other things and it doesn't work and lying is ethical because it actually would be beneficial for the person living with dementia. Is there any specific advice that you would give to caregivers to help them avoid getting caught in a lie? ] Ben: [What] you should do is really to try to get to know where they are in their time shifting. Ask them questions. "How old do you think you are? Do you know what year it is? Or what would you be doing now? What would you expect your husband to be doing now?" That information will give you a good sense of where your loved one is in their time shifting. And then once you gather that information, we do something called “entering their reality”. You're now leaving the reality of what we know for what year it is and all that stuff, and we're entering the reality for the person living with dementia. If we share information that's true to them in that moment, that will lead to potentially a good outcome for the person living with dementia. And there's actually some new research out this year from Denmark that [poses the question whether] when you enter the reality of someone with dementia, share information that's true to them in that moment, is that lying? Because the other aspect is that if you share information that is true to [your reality] and the person is in a different reality, that information's going to be distressing too because it's not matching the reality. So it's really [about] understanding where the person with dementia is in that moment, because that moment changes, and sharing information that is true to them in that moment. Jay: Hey, Ben, I'd like to run an example I heard once past you that I think relates to what you just said. Somebody goes to visit their parent who's living with dementia, and the parent said, "I had an amazing lunch today. I had lunch with Salvador Dali and Winston Churchill." And the visitor replies, "Wow, that's way more interesting than the lunch I had." So I'm taking from what you said that it is not really lying because you're entering their reality? Ben: Depends on the way you look at it. It's sharing information that's untrue to us. But if it's information that's true to that person, if it's in the best interest of that person, if it's appropriate to share that information with them because it's going to be person-centered, then yeah, it may be appropriate to go along with their story. And that happens quite often in dementia care. Jay: We've been talking exclusively about communicating verbally with someone living with dementia. But in your experience, because there are other communication channels, are there ways to act in these situations where you don't have to rely on not telling the truth? Ben: Yeah. Truth is a spectrum when we're talking about truth versus lies in dementia care. Sometimes we might not want to do an explicit lie like Catherine who didn't want to do that. So an example, your loved one's looking for their car keys, they have to get to work, they're late for work. Maybe you help them look for their car keys. Maybe they're looking for their spouse or their child. Maybe you look around the house with some common hiding areas. As you're looking, you might point to the picture on the wall where the child is young or you pick up a photo album and you start looking through photo albums. There's ways of going along with it. There's ways of maybe distracting them in that situation so you don't have to use an explicit lie or untruth. When I think about my grandpa's experience when he had dementia, part of it is just being present with your loved one. I grew up on a dairy farm, and we would always be picking beans and picking peas. When I would go visit my grandpa, he eventually became nonverbal, but he was still able to pick off the ends of beans. And it would be a good visit, just being present. And I think that's really important too. You don't always have to be talking. Just being present with someone can be very comforting. Allison: Well, it's been very comforting spending this time with you, Ben, and it's been so interesting hearing your suggestions around communication. I think that they're useful not just in terms of dealing with people who are living with dementia, but also in terms of communication with anyone. It's just words of wisdom, and I really appreciate you taking that time and sharing with us. Thank you. Ben: Thank you for having me. Jay: Yes, thank you. Allison: Ben Hartung is a dementia communications researcher. He is also a registered nurse in Alberta and a certified gerontological nurse. He joined us from Calgary. Jay: Allison, this is actually a topic that I think is really super important. How did you feel when you were listening to our guests? Allison: I thought it was important and also so interesting. Something that Ben said really changed the way that I think. When he talked about how you can enter the reality of your loved one and use it as a frame to have the discussions. And for me, that just really reshapes the way I think about having those discussions. It's not necessarily about my reality, it's about what I can do stepping into the reality of that person. And for me, that just opens up a whole new world in thinking about communication. What did you think? Jay: I've thought for some time that it can almost be capsulized as, when you visit someone who's living with dementia, the goal is to leave them happier at the end of a visit than they were when you arrived. I still think despite all the really interesting points of view that we heard today, that's true. And Ben's example of sitting with his grandfather and shucking beans illustrates that idea of leaving people happier than when you arrived and it doesn't have to be talk. It could be almost anything. Allison: Yeah. And the other thing that's really interesting is, when you're thinking about it in that way, that we're working in their reality and we're working to leave them happier than we found them, it also acts to reduce the stress and the feelings of anxiety and guilt and depression, both for the people living with dementia and for the caregivers. And I think that because of that we're really enhancing the lives, yes, of the people living with dementia, but we're also reducing the risk for dementia ourselves by reducing that stress and anxiety and depression. So it really does mean that reshaping the truth can be part of defying dementia. Jay: To find out more about how you can reduce the risk of dementia, slow its progression, or if you're looking for great information on keeping your brain in top form, please visit us at defydementia.org. Allison: There you can check out other episodes of this podcast, as well as our videos, infographics, and other resources. Jay: Our podcast production team is Rosanne Aleong, Helen Chen, and Sylvain Dubroqua. Our writer and chase producer is Ben Schaub. Production is by PodText, music by Steve Dodd, and our cover art is by Amanda Forbis and Wendy Tilby. Allison: And we'd also like to thank the funders of this podcast: the Slaight Family Foundation, the Center for Aging + Brain Health Innovation, and Baycrest. Jay: We really appreciate your support too, so hit that Subscribe button for Defy Dementia on Spotify, Apple Podcasts, wherever you get your podcasts. And please don't forget to leave a like, a comment, or maybe even a five-star review. Allison: Next time on Defy Dementia we're diving deep into the power of music to combat dementia. We're joining the chorus on how making music is good for your brain, whether you're singing in the shower or belting out Beethoven's Ode to Joy in a huge choir. Both Jay and I are in bands, so we are really looking forward to this episode. I'm Allison Sekuler. Jay: And I'm Jay Ingram. 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.