Diana De Faveri: She would just cuss you out, and throw things at you, and [say] “leave me alone”, and “I know what I'm doing and you're an idiot”. And she was just going on and on and on. It was just emotionally and mentally just draining. And I am surprised that I've made it this far without having a nervous breakdown. Allison Sekuler: That's Diana De Faveri. After her mother developed dementia, her mother's behavior changed dramatically. And as you'll hear, such changes are common in people living with dementia. But there is hope. Because there are ways to understand and manage those behaviors. Jay Ingram: Welcome to Defy Dementia. The podcast for anyone who has a brain. Allison Sekuler: Defy Dementia is all about living in ways that keep our brains healthy and reduce our risk of dementia. Jay Ingram: Today on the show we're tackling one of the toughest challenges we can face when caring for a person living with dementia. How to respond to challenging behaviors that seem to come out of nowhere. Allison Sekuler: And we're talking about uncharacteristic behaviors like resisting care, meals and medications. Lashing out physically. Restlessness or paranoia, or even wandering. Jay Ingram: These behaviors can be frightening, exhausting, and heartbreaking, but they're not necessarily what they seem - acts of unkindness or aggression - they're symptoms of dementia and often signs of need or distress. I'm Jay Ingram. I'm a science journalist, author and broadcaster. I've been covering dementia for more than a quarter of a century. Allison Sekuler: And 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. Join us as we defy dementia because you're never too young or too old to take care of your brain. Jay Ingram: Today we're focusing on behavioral and psychological symptoms of dementia. If you know or love someone living with dementia, or especially if you're caring for someone at home, this show is for you. Allison Sekuler: Raising awareness about these behaviors is an essential part of defying dementia. They need to be destigmatized because they're not bad behavior and they don't define the person. They're simply symptoms of the disease. And research shows that depending on where the person lives [or] what the care setting is, between 50 to 90% of all the people living with dementia will experience them. Jay Ingram: Learning how to recognize and respond to these behaviors is also a crucial part of defying dementia. It can improve the wellbeing of the person living with dementia and their caregivers. Allison Sekuler: As we heard on the show before, caregiving can be, in and of itself, a risk factor for dementia, and that's because it's just so hard to take care of yourself when you're focused on caring for others. Risk factors like social isolation or poor sleep, those come into play when a person becomes the primary caregiver for a parent or a loved one who's living with dementia. Jay Ingram: So to defy this aspect of dementia, let's start with a few behavior basics. In dementia, brain cells die and the brain shrinks. This affects how a person thinks, acts and how they interpret the world around them. They might see or hear things differently, misunderstand what's happening or have difficulty expressing what they need. Allison Sekuler: And that's why dementia advocates and healthcare professionals frame these challenging behaviors as responses. They're responses to something that's meaningful in a person's environment, whether it's physical or social or emotional. And healthcare specialists often call these responsive behaviors because they're seen as responses to unmet needs or feelings, something that the person may no longer be able to communicate in any other way. Jay Ingram: For example, if someone gets physical and pushes a caregiver away, that behavior could stem from any number of things like pain, confusion, fear, even how something was said or done. Allison Sekuler: And managing those behaviors might require a little bit of detective work to figure out what need isn't being met and anticipate it before it becomes a problem. But sometimes, despite all our best efforts, the cause just remains unclear. Jay Ingram: Later in the show, we'll share some practical tips on how to manage responsive behaviors. But first, a caregiver's story. Allison Sekuler: Diana De Faveri is 56 years old and lives in Woodbridge, Ontario. She runs a family landscaping business that her father started nearly four decades ago. When a new subdivision goes up, Diana's team gets busy on the lots, grading and sodding them. And Diana's also a mother to two adult children and a caregiver to her 86-year-old mother Elisa. In 2022, Elisa was diagnosed with corticobasal syndrome. It's a rare form of dementia that causes brain cell death that leads to progressive loss of movement, thinking and speech. And for a while, Diana was also caring for her father who was living with malignant melanoma. And as you'll hear, those overlapping responsibilities took a toll and they triggered behaviors in her mom that deeply affected Diana. And one more thing that you need to know about Diana. She lives on a 10-acre mini-farm on top of all of her other roles, she's also a part-time farmer. Diana De Faveri joins us from Woodbridge, Ontario. Diana, thank you for helping us defy dementia. Diana De Faveri: Thank you for having me. Thank you for making me part of this. Allison Sekuler: We want to hear all about your mom and your caregiving story, but first, can you tell us just a little bit about yourself? You run a farm and a landscaping company, so I have to imagine you're really good at fixing things. Diana De Faveri: Yeah. I'm really good at fixing things. My dad always had this thought that if you're going to do something, do it right. So when you got your license, it wasn't just about driving a car, you needed to learn how to change your oil and change your flat tire. My mom was the same way. You're not just going to be in this house and eat. You're going to learn how to cook and do the dishes and do your laundry. At a very young age, we were taught to do everything and why pay for someone else to do it when you can do it yourself. That's the way we were raised. My brother and I. Jay Ingram: And tell us about your mom, Alisa. Before her diagnosis, what sort of person was she? Diana De Faveri: Oh my gosh. She was a wonder woman. She knew how to do everything. She was splitting wood and planting gardens. She also had a mini farm. She took care of her three children and her eight grandchildren. She drove everywhere. She was very independent. She was a very sociable person. She had more of a social life than I did growing up as a teenager. My friends would look forward to her parties rather than my parties. She was very loud, she was very entertaining. She was just a wonder woman. Jay Ingram: And Diana, before your mom's diagnosis, you were also a caregiver to your dad before he passed away. And we're very sorry to hear about the loss of your dad. Diana De Faveri: Thank you. Jay Ingram: What kind of care were you providing for him? Diana De Faveri: Well, in 2018, I was on a beach with him - which I never go on vacation with my parents - but we did end up going and I saw this round [patch]... The size of a toonie on his torso. It was a scab and it turned out to be malignant melanoma, and that's when everything just started. So I took him to all his doctor's appointments. Language barrier was an issue with my dad because he spoke predominantly Italian. So I took him to all his doctor's appointments. I was his main go-to person. So my father and I had a very close relationship from when I was a little girl. My dad took care of me and I took care of him. I just thought that's the way things were done. So when my dad needed his toenails cut, I would cut them. If my dad needed a haircut, I would try my best. I would do a lot of things for my dad.\ Allison Sekuler: And what happened that caused you to take your mom to the doctor to check out her brain health? Diana De Faveri: In 2021, we noticed my mom was doing some strange things. She was driving and she was coming home from her sister's house, she got lost so I had to go get her. We thought that was weird. And then later on in that year, she went shopping and she put her groceries in her car. And when she brought the cart back, she couldn't remember where she parked the car. And this is in the middle of COVID. So she's walking up and down looking for her car. A man noticed this, and asked her what was wrong. She said she couldn't find her vehicle. And she said, "Can you drive me home?" And he did. And I'm at work and I get a phone call from my mom saying what happened and someone drove her home. I said, "Well, who drove you home?" And she said, "Well, he's right here. Speak to him." So he's in my mom's house, this stranger. I don't know who he is. Things could have gone terribly wrong that day. Anyways, he was kind enough to drive my mom home and drop her off with her keys. And I had to race home. At that point, I thought, "Mom, something's wrong, and I don't think you should be driving anymore." Allison Sekuler: So she got a diagnosis of corticobasal syndrome, which is a rare dementia that causes brain cell death. And what were the symptoms? How did corticobasal syndrome affect your mom's memory and cognition? Diana De Faveri: It was funny because she recognized people. So even if she hadn't seen you for years, if you came walking in the room, she'd recognize you. She knew what was happening to her. She knew that she couldn't remember things. So if she'd be walking down the hallway and I'd say, "Mom, go down the hallway, make a left." You lost her. She didn't understand what to do. Then her walking started becoming square boxed. When she had to turn around, she wasn't able to move as well as she used to. It was just a strange thing for me to say. She's got dementia, but she remembers people and she remembers what she did yesterday. And she remembered things that I would think that a typical dementia person wouldn't. Jay Ingram: But she did have symptoms that were unusual and had developed. How did her behavior change after you knew that she had corticobasal syndrome? Diana De Faveri: So her behavior was one of the biggest issues that we had to try to tackle. She just became very angry and very resentful, and I would say even jealous because she would see the way I would take care of my father. Now, keep in mind, my mom's always been the queen of the family. She's always taken care of everybody. She's always done everything on her own and all of a sudden now she's faced with not being able to do that, and she sees me doing it. She didn't like that. Thinking back now I think it was almost like a jealousy thing. And the more I would do for my father, the more she would get angry. To the point where she would throw things at me. She would curse all day long. She would get into fights with my dad. Now keep in mind, my dad's got stage three cancer and he was limited to what he could do, and she couldn't understand why he's sitting on the sofa all day long. Why don't you get up and cut the grass or something? [She would say]. She couldn't understand that part of it. And it became horrible. There's no other word that I can describe that period in our life. It was just horrible. It just made me resent my mother. And I didn't understand why she got so angry. I was there trying to help her, and she was just making me feel just horrible. Jay Ingram: And you describe it as anger and maybe because of jealousy. Were there other features of that behavior that were unusual for your mother? Diana De Faveri: Yeah. She would never throw things at me. She would never yell at me and curse me. She used to say things like, "Damn the day that you were born." She would just say really mean things. And she would look at my father and say, "I hope you die a long, miserable death." She would just say things that were just completely out of her character, and it was really upsetting to everybody. Allison Sekuler: What impact did it have on you and on your dad? Diana De Faveri: My dad, he started to resent her as well, and they were constantly getting into fights. And my dad cognitively he was there, it's just that he was in just so much pain and he didn't need to be yelling and screaming at her. As far as I was concerned, I started hating my mother. I hated everything about her. I didn't want to be around her anymore. And I even told my siblings, I said, "Look, the day that dad passes, I don't want to have anything to do with mom anymore. She's yours. I don't care to know anything about her." I couldn't handle her anymore. There were days where I would just go in my car and just start screaming because I just needed to let off the frustration from all of this. Jay Ingram: Now I know it's not really enjoyable to talk about it, but was this changed behavior, this angry behavior consistent? Diana De Faveri: Yes. Nonstop. She would not let it go. And she would do things and I would try to correct her. Never correct someone who has dementia because you're just making it worse. So you would try to correct certain behaviors, and she would turn around and just cuss you out and throw things at you and [say] “leave me alone”, and “I know what I'm doing” and “you're an idiot”. She was just going on and on and on. It was just emotionally and mentally draining. I'm surprised that I've made it this far without having a nervous breakdown. That's how bad it got. Allison Sekuler: Wow. So it must have felt quite personal then. Diana De Faveri: It did. It did. Because here I am the only one helping my parents, both of them, not just one, both of them. And I was getting treated that way. You try your best to do the best, and it wasn't the best for her. She was just happier when I wasn't there. But then she couldn't cope without me being there. Allison Sekuler: Right. Did you ever try to find help to deal with the behavior, like going to a caregiver support group or anything? Diana De Faveri: I didn't, but I did talk to the neurologist, and then that's when they referred me to a doctor at the Baycrest clinic. And I spoke to a few doctors there, and changing her medication and putting her on certain medication and taking her off [others]. It was just a trial and error thing. It was helping, but there was no changing her behavior. And it wasn't until my dad passed away that it was like a light switch. All of a sudden she calmed right down. She wanted me there all the time. She was loving. I just didn't understand. It was literally a light switch. He died, the next day my mom was back to normal. Behavioral issues were gone. Jay Ingram: Wow. That's amazing actually. And I guess that's what led you to think that jealousy might be underlying the dramatic change in behavior that she had shown. Diana De Faveri: Yes. That's why, thinking back, I think that's what it was. It was jealousy, and it was the fact that she was losing control over her domain and she didn't like that, and she just hated everyone that was in her way. And I was the only one there so she took it out on me. But then when my dad was no longer in the picture, it was just like a light switch. It was unbelievable. I couldn't believe the dramatic change from one day to the other. Allison Sekuler: How's your mom doing now? Diana De Faveri: Behavioral problems, we have none other than she cries a lot. She's always emotional. But it's nothing compared to what she was when my dad was alive. The only activity she does now is coloring, and she still struggles with that. “What color do I use and what do I color?” She repeats herself all the time. Jay Ingram: But no anger? Diana De Faveri: No. No anger. The only time she ever gets angry is when she thinks of the situation that she's in now. She realizes that there's something wrong with her, but she never gets angry with a person, never with me. She's never been angry with me. She's very happy to see me now. She wants to hug me and kiss me. Keep in mind, my mom's never in my entire life kissed me or hugged me growing up, and now she does it. Allison Sekuler: So how are you feeling now? Diana De Faveri: I'm okay now. I'm a lot better now. We did hire some PSWs. She has [them] round the clock here because I couldn't sleep there anymore. So they're there all the time. But I go there twice a day; in the mornings and after work. I tried to have dinner with my mom two to three times during the week, sometimes even more. But I try to spend as much time as possible with my mom. Allison Sekuler: Yeah. And before you were saying it seems almost personal, but now looking back on it, it sounds like you don't necessarily think it was personal anymore. Diana De Faveri: No. You forget about that a little bit because you know that wasn't her, that was the dementia, that was whatever was going on in her brain. You got to understand, this was new to her too. She didn't know what was going on in her mind. She didn't know what was going on. And whatever way she needed to act out, she did. I'm just glad that it got rectified and we're able to move forward. I don't have that hatred towards my mom anymore. And I feel like I got my life back because for three years I didn't have a life. My life was there with my parents looking after them. I had to put my life on hold completely, and it was very traumatic for me. I'm at 56 and I've just gone through a separation and I want to start experiencing life, and I couldn't. I had to look after my parents. So that being said, it was the three worst years of my life. But now that my mom behavior issues are now settled, I feel like I have my life back. But it was a huge life lesson that I try to teach to my children. Because I don't know what the future holds, and I could become like my mom. I would hate for that to happen, but it was taboo back in the day when nobody talked about it. Whereas now, I want my kids to understand that if anything happens, this is the plan. Plan A, B and C. So I'm happy with that, that we're all on the same page and everyone just seems a little bit more relaxed than they were three years ago. Jay Ingram: Boy, you had a harrowing experience. And Diana, for people in our audience who are caregivers or who might become caregivers, is there a piece of advice from your experience you'd like to share? Diana De Faveri: Yes. It doesn't matter how much of a wonder woman you think you are, when it comes to a dementia person or an Alzheimer's person, you need help. And don't be shy to ask for it. You can't do it on your own. You will go crazy before you can do it on your own. Allison Sekuler: Thanks so much for that and for sharing your story as well. Diana De Faveri: Thank you. Jay Ingram: Yes, thank you. Allison Sekuler: Diana De Faveri is a mom, a caregiver, a part-time farmer and owner of a landscaping company. She joined us from Woodbridge, Ontario. Jay Ingram: Our next guest has been listening to Diana. Dr. Nicole Didyk is a consultant geriatrician at Cambridge Memorial Hospital in Cambridge, Ontario, where she diagnoses and supports people living with dementia. She also helps caregivers manage responsive behaviors. Dr. Didyk is also a clinical assistant professor at McMaster University. And in her spare time, she's also a YouTuber. Her channel The Wrinkle is dedicated to the health of older adults, and she doesn't shy away from topics like incontinence and sex in later life. Dr. Nicole Didyk joins us from Waterloo, Ontario. Dr. Didyk, thank you for helping us defy dementia. Nicole Didyk: Thanks for having me. It's my pleasure. Jay Ingram: What struck you about Diana De Faveri's story? Nicole Didyk: I found Diana's story really excellent. It's very typical of the types of responsive behaviors that I see in my practice. And it really reminded me that the caregiver is the expert when it comes to responsive behaviors. And Diana illustrated that beautifully. How she was able to tell us everything about her mother, like her upbringing, how she's the queen within her own family, her relationships with her husband and her kids. So that's really the first step in defining and treating a responsive behavior is, who is the person? Because we have to figure out what is the meaning behind this behavior? Jay Ingram: Do you have any thoughts on why Diana's mother's behavior suddenly stopped after the death of her father? Nicole Didyk: That was fascinating. In some ways, it makes a lot of sense because that's one of the approaches to treating behavior is, what is the trigger? There's almost always some antecedent. So what's going on before the behavior emerges? And it's possible that when the trigger is gone, when the husband has passed away, the behavior would just settle. In some ways that makes a lot of sense. But it is fascinating. Allison Sekuler: At the top of the show, we mentioned that between 50 and 90% of people with dementia diagnoses are going to exhibit these sorts of responsive behaviors. And I guess what we're wondering is what are the kinds of most common impactful behaviors that you see on a daily basis in your clinical practice? Nicole Didyk: Well, part of that answer depends on what do we call a behavior or what is just a symptom of dementia? So it's a behavior if the caregiver finds it to be a behavior. A common one is repetitive questioning. Repetitive questioning is a very natural symptom of Alzheimer's disease, and it affects short-term memory. Allison Sekuler: Right. So just asking the same question over and over and over. Nicole Didyk: Precisely. Or saying the same thing over and over. And so as a caregiver, that can be extremely wearing and tiring and frustrating. But for the person who's living with dementia, they haven't asked that question before. And so it's completely understandable when we go into the world of the person living with dementia and see it from that person's perspective. But sometimes families will bring a person with dementia into my office and say, "Can you tell them to just stop doing that?" And that's a really good opportunity to do a bit of teaching and say, "Well, the person with dementia is doing their best. They're living with dementia, and they're doing the best they can with that condition. So you, caregiver, you're the one who has to learn how to change your approach to that behavior." Allison Sekuler: Right. So can you give us an example of a common but say, very difficult behavior that you've advised people about and walk us through how you've helped people respond to it. Nicole Didyk: Well, repetitive questioning is very common. Also, what gets called wandering, we try to be more descriptive about that because people who are wandering are going for something. It's not a matter of roaming around aimlessly. It's often the person is trying to leave to go to work or trying to leave to go back to their home, which might be the home that they grew up in, 40, 50 years ago. So trying to get out and go is a very common one. And understandably can be very alarming because a person might choose to go at an inopportune time or it could be the middle of the night. It could be when the weather's poor. That is one that can be very upsetting to people. So first we want to define the behavior. Don't just call it wandering, call it getting ready for work in the middle of the night. And then figure out how to respond to that without medication first. Our first approach is always what can we do with our behavior and with the environment to make this behavior not as troublesome or not as problematic? So we start with that. And sometimes that takes a little detective work, a little sleuthing to figure it out. Jay Ingram: Both those examples, Nicole, strike me as possibly coming from living with dementia itself, repeated questions, thinking that you've got to go to work. But there are examples of responsive behaviors that strike even the family members as being an abrupt absolute right turn from the typical behavior of the person. So how do you deal with those? Nicole Didyk: Well, that's very interesting, and I think you said it. It appears to be an abrupt right turn, but if we start with the person and dig more into maybe their background or their previous behavior, sometimes we can get a clue. So an example, actually this week I saw a person who is getting up in the middle of the night, and instead of going to the bathroom, going to the toilet to relieve themselves, the person is relieving themselves in a closet or sometimes just on the floor near the bed. Family members have never seen this happen before. It's a problem. But when we find out more about it and observe the behavior a few more times, it turns out that when he grew up on the farm, they had a chamber pot in the room. So even if in the middle of the night he's directed to the toilet, no, he just wants to use his chamber pot so he can get back to bed. So we were able to put a commode by the bedside. So it's not your traditional chamber pot, but it's the medical modern, cleanable, sanitary version of that. And when he got up in the middle of the night to relieve himself, he was happy to use that because it meant he didn't have to walk all the way down the hall to the bathroom. Jay Ingram: That's a really neat example of what might appear mysterious to actually have an explanation. But do you encounter cases where the responsive behavior is impossible to understand where it came from? Nicole Didyk: Yes. I would say that some behaviors remain a mystery. That can be frustrating, but it means that we just have to go into the world again, go into the world of the person, accept the behavior for what it is. It's a response that we don't totally understand and just go from there. Allison Sekuler: And in some cases, we've heard people say, "Well, my loved one, normally very nice person, all of a sudden is saying horrible things that I've never heard this person say before." And in those cases, sometimes the response from the people is that they feel almost a dislike for the person now, or they think, is that really what the person has thought of me all of these years and never said it. So in those kinds of cases, what advice do you have for people? Nicole Didyk: Well, that's definitely something that came up in Diana's story. Because of her mother's behavior, it started to feel so personal. And it's easy to say don't take it personally, it's the disease. It's not the person. But it can be hard to do. I find in my practice sometimes if I can relate it to what's going on with dementia, and say for example, if someone is living with frontotemporal dementia so that the frontal lobes of the brain are more affected, well, the frontal lobes help us to bite our tongues when we don't want to say something. So it might be that the person is becoming disinhibited, and these thoughts and feelings are coming out. But it's not necessarily a personal thing. The anger and the vitriol might be directed towards the situation. For dementia with Lewy body - that's a kind of dementia where there is more of an effect on the parietal lobes. It's a different disease process. So people are more likely to have visual hallucinations and have fluctuations. Whereby if we think about the classic Alzheimer's, well, that's the hippocampus again, the temporal lobe. So it's going to be short-term memory, language. So it is often helpful to make those biological correlations. Jay Ingram: Nicole, we've been discussing mostly changes that are difficult to handle or unpleasant to endure if you're a loved one. But does the opposite ever happen? Do you have people living with dementia suddenly become friendlier, more lovable, more amusing, whatever? Nicole Didyk: Yes. I have many anecdotes like that. So one person told me that their mom was always very reserved, and she developed a taste for flashy things. So she started wearing brighter colors and more interesting outfits, and it was a conversation piece. Or people might find that disinhibited part where people can be more affectionate can be a desirable side effect. I've even heard of people using the short-term memory deficit to relive beautiful moments. So for example, if a person's grandchild is expecting a baby and they forget that they've already been told that 20 times, well, every time they hear that news, it's like the first time that it's ever been told. So there can definitely be a flip side to the difficult responses. Allison Sekuler: That's so nice to hear. So you said before that medications aren't necessarily the first line of defense, but how do you approach prescribing medications as a possible solution? Nicole Didyk: Well, that's a good question because as a physician and a geriatrician, one of my main tools in my toolbox is being able to prescribe medication. And there's a couple of little rules of thumb that we use. One is that medication doesn't act alone. So like most brain conditions, we have to use medication in concert with non-medication solutions. We still have to do all that thinking about the environment and the caregiver response while we use the medication. That's number one, this isn't the only fix. We have to do it as part of a whole program. The next principle in geriatrics 101, is that we always want to start at a low dose. We want to increase that dose slowly, and we want to have a target symptom that we're going to reassess. Obviously we also want to recognize that behavior isn't usually permanent. So we always want to be reassessing and thinking about, do we still need this medication? Maybe we can start to try to wean it off and maybe the person's dementia has changed so that we don't have to use that and we don't have to tolerate the risks of using medication anymore. Jay Ingram: Responsive behaviors, the negative ones, if I can call them that, have a huge impact, not just on the immediate caregivers. And there's a lot of stigma related to responsive behaviors. Is that really damaging? And if so, how do or do we combat it? Nicole Didyk: Absolutely. There are layers of stigma when it comes to responsive behaviors. So at the caregiver level, it's understandable that if somebody has a responsive behavior that other people might not understand, it might make the caregiver want to keep their person with dementia at home, not take a chance that behavior's going to come out somewhere where it won't be understood. And so that really just compounds the caregiver's stress and anxiety and isolation. But I'm always happy if someone who's living with dementia and may have some unusual responses is out there in the community because it's so much better to have somebody out in the world so that we can normalize this. This is a normal, very, very common part of dementia, and dementia is common despite everything we're doing to defy it. It's currently very common in our world. So we have to see that in the community so that we can all understand it better. Allison Sekuler: Nicole, we've said many times that caregiving itself can be a dementia risk for caregivers. Maybe they're more stressed, maybe as you highlighted, they could be more isolated. When you're talking to caregivers in a home setting, what advice do you have to help them manage their own feelings and wellbeing? Nicole Didyk: It's always important, I think, for caregivers to remember themselves, to do that little bit of self-care, which is a corny phrase, but it's really true. That if you're not looking after yourself, if you're not well, you can't be a caregiver to anyone else. So it's okay to take those few minutes to close the door, to take a deep breath, and then to reset. Finding those simple strategies can be so valuable. I find in my clinical practice that there are a few phrases that I try to give people over and over again because caregivers are overwhelmed even when they're in my office. And if I can just give a few little simple pieces of advice or even a mantra that the person can repeat. I like how Diana said "Don't correct someone who's living with dementia. Just don't correct. It doesn't work." And that's one of my favorite phrases, and I'll follow that up with don't correct, connect. If we can connect with the person, validate what they're feeling, and then make an emotional connection on some other level. If somebody is asking the same question over and over, just validate it, “you're really concerned about making sure we get to that appointment. Do you remember the last time we went and we went out for ice cream after and we saw those kids? You love seeing little kids, don't you?” Some kind of little emotional connection. Go into the world of the person with dementia. Don't correct. Allison Sekuler: So even if they didn't have an appointment to get to, enter their world and acknowledge where they are at that moment. Nicole Didyk: Absolutely. Validate that their concern is real to them, and then move on from there in an emotionally connected way. Jay Ingram: Nicole, this has been so much useful advice. We really appreciate you coming to join us to help defy dementia. Thank you. Allison Sekuler: Yes, thank you. Nicole Didyk: Well, thank you. Jay Ingram: Nicole Didyk is a consultant geriatrician at Cambridge Memorial Hospital in Cambridge, Ontario. She joined us from Waterloo, Ontario. Allison Sekuler: So Jay, so much great information. What was your response to everything that we've just heard? Jay Ingram: I think the words so much are key, Allison, so much describes I think quite accurately what we've heard because there's an amazing range of behaviors from things that I think many caregivers would be familiar with, like asking the same question again and again, which really is a behavior that I think is more or less easy to understand and then roll with. But then you've got the other end of the spectrum. We heard in the show about cursing and throwing things. It's very difficult to encompass them all and come up with a strategy for them all. I just don't think that's really possible. I think the important message that we've heard today is to try to understand. Even though the variety of behaviors can be broad, try and understand where they're coming from, the fact that they are quite possibly coming from somewhere and be able to react in the face of sometimes very trying circumstances in a calm way. Allison Sekuler: Yes. And it's not about trying to always be correcting somebody in terms of what they're doing, even if you figure out what they're thinking and it may not be aligned with the reality, both of our guests said don't correct the person living with dementia. And Nicole, I loved her mantra, which is don't correct, connect. We've heard this before, you want to enter the world where someone is, take their perspective, take their point of view, and then that helps you understand them. And also it'll help to alleviate some of those symptoms. It's actually not a bad philosophy for just how you deal with everyone in life. Try to understand what their perspective is and connect with them in that way. Jay Ingram: And I would just add very quickly, we're not saying this is easy. Allison Sekuler: No. Jay Ingram: Because if you feel like you're being challenged or even threatened, it's pretty difficult to take that mental step back and say, "I'm just going to try and understand and connect." But in the end, that's the best thing to do. Allison Sekuler: And I think the other thing is when someone's exhibiting these behaviors, I hear people say all the time, oh, my mom or my grandma, or whomever, they said some really horrible things. And it can make you feel different about the person, or it can make you think that they feel different about you. Just remembering that this is not really the person, this is the disease. Again, it's not easy to do, but just when Diana was talking about taking it personally, the more you can do to recognize it's not about you, it's the disease that is causing these behaviors. I think that's so important for people to understand. To find out more about how we can all boost our brain health and reduce our risk of dementia or slow its progression please visit us at defiedimension.org. Once you're there. You can check out all the other episodes of the podcast as well as our videos and infographics and resources. Jay Ingram: For their kind help on this episode, we'd like to thank Dr. Yael Goldberg from the Austin Center for Neurology and Behavior Support at Baycrest. And Rebecca Lemieux, a clinical nurse specialist in acute geriatrics at Mount Sinai Hospital in Toronto. Our podcast production team is Rosanne Aleong and Sylvain Dubroqua. Production is by Podtech. Music by Steve Dodd. Our cover art is by Amanda Forbis and Wendy Tilby. Our writer and chase producer is Ben Schaub. Allison Sekuler: And we'd also like to thank the funders of the podcast. The Slaight Family Foundation, as well as the Center for Aging Brain Health Innovation and Baycrest. And we are very grateful for your support too. So please push that subscribe button for Defy Dementia wherever you get your pods. And don't forget to leave a like, a comment or maybe even a five star review. Jay Ingram: Next time on Defy Dementia. It's our update episode. Allison and I are going to dig into some key brain health news stories that haven't yet made it onto the podcast. Allison Sekuler: And we'll also reflect on what Jay and I've learned so far from hosting the show and leading Defy Dementia “on the road” events across the country and around the world. Like you, we are actually trying to do our best to protect our brains and lower our dementia risk. But as you'll hear when we discuss this, we're also human. So that's coming up next time on Defy Dementia. I'm Allison Sekuler. Jay Ingram: So reassuring to hear that we're human. I'm Jay Ingram. Thanks for listening to Defy Dementia. Don't ever forget you're never too young or too old to take care of your brain.