Studying Experienced Caregivers: Four Essential Tips / Alzheimer’s and Other Dementias

This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Hey caregivers, how do you think you would feel if you were caregiving for a second or third person living with dementia? Dr. Emily Morose, a researcher at Emory University's School of Nursing, coined the phrase, experienced caregiver. Sue and I both have experienced caregiving more than once. And she's coined that phrase to describe the multitude of people who are doing just that. In this episode, Sue and I are talking with her about her research, as well as giving tips for experienced caregivers. And we have four tips. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is off limits. Let's get started. Music I have the great good fortune to be able to introduce you this morning, Dr. Emily Morose. Dr. Emily Morose is a tenure track assistant professor at Emory University School of Nursing. You are a social behavioral scientist, meaning she studies how people think, feel, and act within their social and personal situations. Dr. Morose has received training in developmental psychology, gerontology, geriatrics, and public health. And she was most recently a postdoctoral research at the School of Medicine at Yale. Emily uses her multidisciplinary perspective to develop resources, education, and interventions that can support people living with serious illness, family caregivers, and people who are bereaved. Through your research and interviews with caregivers, you coined this amazing term, experienced caregivers. This describes people who are caregivers more than once to family members or loved ones or from the medical definition, others in adulthood. Thank you so much, Sue, for that great introduction. And thank you both for having me. I'm really excited to be here to talk a little bit more about experienced caregivers and kind of shed light on this really common phenomenon in our country and in our world, the idea of taking care of more than one person living with dementia across our own adulthood. My research focuses on the ways that your story from your past experience can shape your health and can shape the way that you think about yourself, as well as shaping the way that you might feel prepared to be a caregiver for a second or third time. That's huge. Yeah, interesting. Well, I actually got a chance to participate in the study and tell some of these stories, so I appreciate it. Emily now knows all of my deepest, darkest secrets, as you do, I'm sure, for many people. Tell us a little bit about your study. Yeah, so this study is a virtual study that we're conducting at the School of Nursing at Emory. It involves participants connecting with us over Zoom or over the phone to do a few different things. So they're completing surveys about their caregiving experience, and they're also sharing stories, like Nancy mentioned, from caregiving. And we'll talk a little bit about later about what those stories mean and why we collect those stories from people. It's not just to get their deepest, darkest secrets. So now you have a way of dragging it out. With this study, too, we're focusing on people who are experienced caregivers, meaning they've taken care of more than one person living with dementia. And we're also focusing on new caregivers, people who are caring for someone with dementia for the first time. We really want to be able to look at the differences between these two groups, as well as thinking about what are the resources that each of these groups may need, what are the challenges they face, and how do they feel prepared for that caregiving role. And these are people who are currently in active roles of caregiving. Yeah, we're looking at people who are currently taking care of someone with dementia, even if they're pretty early on in that journey. Okay. All right. Well, we'll talk more about that at the end as well. But you've got some great experience already. So let's start with Emily's tips for experienced caregivers. And the first one is to avoid assumptions about who might be prepared to be a dementia caregiver. And this is really important. Yeah, this came out of some of the interviews that I've had with people who are experienced caregivers or who are, have been caregivers in the past and are kind of imagining stepping into a second or third role in their life. We have this assumption that people who are experienced caregivers will just feel more prepared the second or third time. And I think we have this assumption. Yeah, it's funny. I mean, the people who are experienced caregivers tend to laugh at that. Yes, we do. I think we have this assumption because this is something that we tend to think about in our society in general, the idea that something in our past can help us to, can challenge us in the right way so that we can grow and become better. Right. So I think about, I kind of talk about this in terms of thinking about dating, for example. We tend to talk about, you know, the more you're able to date and meet new people, the more you're able to notice what those red flags are and the things about a person that you might like. And so the more you date, the better you are at dating. That's kind of the assumption we have. And we kind of apply this assumption to a lot of different things in life. So we think about dating, we think about childcare. Once you've raised one child, it helps you to raise another. We think about navigating our careers. But when it comes to caregiving, this assumption about being able to take what we've learned and just naturally grow is not always going to be true. Because we know those caregivers have been through a lot of hardship in those past roles that might sort of take away from their sense of being prepared to be a caregiver the second or third time. Well, Nancy, you've got a great statement about that. Yes, well, and I really appreciate this because I did hear from somebody I could tell you, but the common statement is you've met one person with dementia, you've met one person with dementia. And that goes to the multiple caregiving journeys that Sue and I have been on. And I can also say that, you know, some of the things that happen in a journey, you project those into the next journey, which I think is kind of what you're saying. And then that causes a lot of angst about the next journey more so than probably, then may or may not be necessary. You don't know. Yes, definitely. What we've learned in our research is that for people who are new to the caregiver role, they've never been a dementia caregiver before. They actually might kind of underestimate the challenges that they're about to face. And so they might report that they're more prepared to be a caregiver at this point versus those experienced caregivers that people who have been through that journey once or twice for caregiving. For someone with dementia in the past, they actually might overestimate the challenges that they're about to face and actually report less preparedness to be a caregiver despite the fact that they have that experience. Interesting. Well, and that leads us into tip two, right? Which is if you're stepping into the role for a second or third time, assess how prepared you really feel. So be honest with yourself about stepping into the caregiver role again. Definitely what we've learned through the research that we've done so far is that there's three different ways that people feel prepared to be a caregiver. One of these things is feeling prepared by having skills or insights about how to navigate that caregiving experience. Another way that people feel prepared though is thinking about the confidence and readiness that sense of, I can do this and I'm ready for it. And then that third way that people may or may not feel prepared is that they might feel like they have the health and resources to actually step into that role. I feel good. I feel healthy. I feel like I have access to the resources that I need to be a caregiver. So these are three different ways that people may feel more or less prepared to be a caregiver. But what we've noticed is that with experienced caregivers, people tend to focus on that first thing. So saying, hey, you know, you've developed skills, you've developed insights from the past, so you should be prepared to do this job for the second time. Exactly. When in reality, that person might not feel confident anymore because of what's happened to them before, or they might not feel like they have the health and the ability or the resources at this point in their lives to be able to be a caregiver again. And so when we focus on just that one facet of preparedness, just those skills and insights, yeah, it might look like experienced caregivers are more prepared. But if we think about those other facets about being confident or having your health or resources, we tend to realize that experienced caregivers, it's maybe realistic that they don't totally feel prepared that second or third time. I think a layer of that that's coming to me as well is that other people would think that you're qualified. You've already had that journey. You're not going to need much help because you've got this. And then what that's going to do to you is to be like, well, I shouldn't ask for help because people think I've got this and I'm confident. And so it could, it can really disrupt the ability to receive support and how you feel about your caregiving journey and having the right emotions with it. Yeah, definitely. Yeah, when we make assumptions about other people or when we don't stop to take stock and think about our own preparedness, we can kind of fall into that trap of saying, I'll be just fine. And it can actually kind of preclude us from getting the help that we might need. That's huge. Right. And so when I talk all the time, I mean, this is not something you can do alone. So you need a personal support network, no matter what, whether it's your second time, third time, because we all know damage care gaming is really hard. So, you know, you need help. We need help. And when we talk about no two journeys are the same. I've been on a multitude of journeys and they may have had a similar diagnosis under the category of dementia. Our experiences weren't the same because they weren't the same. They weren't navigating the journey the same. And part of what I learned is to look at each one. Yes, I have gone through some of the experiences, but meet them where they were at being their journey, not what a textbook said, well, this is what's supposed to happen or this is what's what happened in your last what happened like the last journey is where are they today meet them where they are today. And so it's observing them. But then towards your other point, it's observing us is that the pressures that I had in an earlier caregiving journey in another one of my caregiving journeys because they had different emotions and challenges. It challenged me different my levels where I felt stressed or I felt overwhelmed were different. So it's observing them and observing us. Yeah, definitely. And this leads us really pretty strongly into to tip three, which is for those of us who are experienced caregivers. Don't hesitate to get involved in skills training and go back into support groups. Yeah, exactly. Definitely. I mean, one of the things that's happened as as as researchers and funder funders like national funding agencies have started to focus more on caregivers for people living with dementia. It's been great. There's been lots of work thinking about developing programs and providing an evidence base for those programs. But unfortunately, what's happened is that we've tended to develop evidence based programs for new caregivers. And so we kind of have that in the back of our minds as we're developing these programs is to think about, hey, you know, a lot of these people have never done this before. So let's design something for them. And then we tend to kind of market it just for new caregivers. But the reality is those programs might be really beneficial to someone who's an experienced caregiver as well. If they need, if they need that support, they should feel comfortable and you should feel comfortable to access that support, even if you've been a caregiver before. And so thinking about, you know, finding the right fit in terms of the ways you feel more or less prepared finding those resources that might be good for you, even if you've been a caregiver before. And actually in some cases, especially because you've been a caregiver before, and you know that things are different now and you know that there's challenges that you're bringing into this new role, finding those resources that will be the right fit and not feeling shut out and not feeling like this might not be for me just because I've been a caregiver before. And I really like that. What I learned is how important it was for me to go back and get skills and to go back into support groups and there were three things that were important to me. One was that, hey, they were a refresher. It reminded me of things that I had forgotten or that hadn't been pivotal in a previous caregiving journey. It also helped me learn new things because we're constantly learning and growing and there are new things. So it introduced me to things that I hadn't been aware of. And it also gave me an opportunity. So many people throughout my caregiving journeys leaned into support leaned into share. I learned the stories from them and that really helped me. And here I am now with the opportunity to go back in and share to help other people, which is a big part of why Nancy and I are doing what we are doing today is that we have learned and we want other people to learn more easily than we have. So really, really powerful reasons to do this. This is just excellent. Definitely. And what we're doing, one of the things we're doing in the research study that we've got going on right now is thinking about what has worked for people who are experienced caregivers. So what are the resources that have worked for them before? And what are the resources that they're leaning into right now? And so we actually ask participants to give us a list of, hey, what have you been, what resources have you been using to take care of yourself, to take care of your loved one? And how does that kind of map onto what you've used before? And this will help us to learn about for those new caregivers, what are they using for those experienced caregivers? What resources are they using to think about, you know, are there differences in what people need? Or is it true that actually there's a lot of similarities that those experienced caregivers are using the same types of resources as those new caregivers? Well, I, like I said, I participated in the study last week and I really appreciated that question. You know, what are the resources that have worked for you? That was a great question and I feel like that'll be good information for other people to have for sure. Definitely. All right, well, let's talk about tip four and my stories and I did not mean to imply that you drug anything out. You actually made me feel very comfortable telling stories that that were really heartfelt to me. And it was the way you asked them got, it really helped me pull back into some fond memories that I really haven't told even on these podcasts where I think I'm telling all my stories, but I, you know, there's some fond memories I have that I didn't even have never thought to mention to anyone. So it was, it was very thorough. Oh, that's great. Yes, I'll have to tell you some of them later. So, so tip four is about sharing your stories. But Emily's going to talk to us a little bit about how to be mindful about how we share the stories so that we're doing it in a healthy way. Yeah, definitely. So I have had the great honor and privilege to hear the stories from hundreds of caregivers hearing Nancy's story and hearing the stories from other participants in my research. It's been amazing the ways that people have opened up to me and told me about some of these really challenging or poignant or remarkable moments in their caregiving journeys. I really appreciate people's openness to share and I think that people appreciate it too. I think they like the opportunity to have their story from caregiving heard and so I know after my study sessions are over a lot of people say, just like you said Nancy, hey, it was really nice to tell my story and to think about these things in a new way or to think about these things that I haven't thought about for a few years. But there is a purpose behind it. It's not just me kind of you're not just not. No, the reason that I'm hoping to learn more about caregivers stories is because I'm looking at the ways that people tell these stories and how that can be connected to their health and their sense of themselves and their preparedness for their new care role. And so what we've learned so far and what we can pull from narrative therapy and other therapeutic disciplines is just the understanding that when you're telling your story from caregiving, try to tell it with grace and try not to tell it with judgment. Beautiful. And I know this is something that feels important to a lot of people the idea of moving forward without judgment, but also telling your story to yourself and to others without judgment. That means not judging yourself. Yeah. So, so making sure that that story is coming from a place of grace because caregiving as we know and as you talk about in all of your podcast episodes is really challenging. And there are these difficult experiences that you're navigating being able to tell your story with grace might be a really powerful driver of your health and your wellbeing in the present. And so don't underestimate the powers of the stories the way that you're talking to yourself through story about your caregiving experiences. Interesting. I think that's so powerful and a couple of things come up from that from what you said one of them is that it gives us the opportunity to look not from a place of judgment. So when we are when we are giving ourselves grace and we're in there. What I talked a lot about is in the moment of an experience we can't possibly know if it's ultimately good or ultimately bad. And when we're telling the story afterward, we have the opportunity to step into the lens of while in that in the moment of that we were challenged and yet what we learned from it. And we learned about resilience for ourselves or we learned other things or we learned about the things that we did. And I think the gift of the storytelling is that that we can have the opportunity to pull back and look at more of the experience, not from a place of judgment. I love what you're doing. That's just that's so wonderful. Thank you so much. What other comments would you have about what what this study is? Yeah, I mean, I think the bottom line of the work that I'm doing is that we know that there's so many experienced caregivers out there right now. And we know that there will be more experienced caregivers over time. Lots of people would be stepping into a dementia care, given role more than once across their adulthood, but we still don't know that much about what it's like. And what their challenges are and what their strengths are and how to support these experienced caregivers. So my work is really focusing on that just developing this understanding of the experienced caregivers journey and thinking about, you know, how we can start to develop resources that are really tailored for these folks and how we can start to develop an understanding of the strengths that these folks bring and how to think about that across all sorts of different caregiving journeys and thinking about different types of dementia and thinking about the time that that person has spent caring for different people like a grandparent or a parent or a spouse. And so we're doing a lot of just learning through surveys and through storytelling during this virtual study and we really appreciate that the caregivers who participate are so great about taking all of our surveys and really engaging deeply with the questions that we ask. So who's eligible for the study. Okay, so we're looking for participants who are living in the United States. And we're looking again to recruit people who are brand new to the caregiving role, as well as people who have been a caregiver before once or twice in the past. One of the things I want to make sure to be clear about is that some people don't even think about the fact that they're a caregiver when they're really early on in that journey, but we're actually looking for those people who are pretty early on, because we're going to ask you about how prepared you feel. And so you've probably got people you've been asking they all of a sudden realized. Oh, yeah, yeah. Yeah, exactly. And in fact, we've had some participants call in who say, Hey, I took I was caring for my mom for years ago and she passed away. Will I be eligible for your study and I'll say, Well, I don't know, let me ask you a couple more questions. Are you caring for anyone else right now? And they'll say, Well, you know, my dad is starting to experience memory changes. And so I'm starting to step into that role too. Well, you would be a great fit for our study. You may not feel like you're kind of in the thick of the caregiver journey. But because you're starting out down that path with someone who's developed those memory changes and is going to continue to experience memory changes. You would be a great fit for this study. So we're looking for those folks who just started out in that new caregiver role in the past few years so that we can learn about how they feel about that upcoming journey for them. And there's an honorarium that comes with it. Yeah. So this is a one time virtual study. We have folks call in and then we just check their eligibility and we schedule them for a study session. That study session takes about an hour or two depending on how much you want to share. Nancy was pretty quick actually with getting through those questions. So I'll know I can talk real fast. You can. Some people take a couple of hours and we make sure that there's time for you to share as much as you want. And then at the end, everyone is given a $50 gift card and it's just a virtual gift card. That's pretty easy to use. So I did it in my Amazon account. The last thing that I want to mention too is that folks can participate in this study while they're participating in other research studies about dementia caregivers. So I know you're doing this series. Yeah. Where you're talking about a few different studies going on at Emory. So you can participate in those studies and this at the same time because it's just a one time study where we're learning more about you. So won't interfere. And we'll make sure that the link to how to get to Emily and let her or her team know that you're interested is in the show notes. There's also a press release on the caregivers journey.org website that has links in it as well. And if you have any trouble getting to those, please just send an email to Sue or I or ask a question on our Facebook page or Instagram page. It's Nancy or Sue at the caregivers journey.org and they can just send us an email. We'll make sure you get the right links and can get in touch with the right. Yeah, definitely. Yeah, we're looking forward to learning from anybody who's interested. And so just reach out and we're happy to just check if you're eligible and even if you're not eligible for this study, we've got other projects going on. So we'll match you with something to make sure that you have the opportunity to share your story. Yeah. Emily, thank you so much for what you're doing. Yeah. And part of what Nancy and I are both taking away from this is that this is so much about the reason that we're doing what we are doing is the stories that can be helping other people, the lessons doing things. And we know that when we didn't know what it was, we didn't know how frustrating and overwhelming it was. And coming back into this is really helpful to learn and also give it a place. And to your point, and part of what I love the most about it, to do it through grace, not judgment. So thank you very, very much. Yeah. One of my favorite points was, I don't think I had thought through not thinking about the amount, needing the same amount of support you need, whether it's your first journey or your second or third journey, you still need support and help from your friends. And they may not be thinking that way about you because you've done it before. So very insightful and high opening. So let's summarize. Today, Sue and I talked with Dr. Emily Morose about really tips for experienced caregivers. We learned a lot. We certainly did. We shared four tips. First one is to avoid assumptions about who is prepared to be a dementia caregiver. Second, assess how prepared you feel about with your confidence, your skills, etc., about taking on a second or third dementia caregiving role. And even if you have tip three is even if you have previous dementia caregiving experience, leverage support groups, support groups, training, refresh your skills. Don't be shy about leveraging the resources that are out there. Build your personal network, just support network, just like you would normally would have. And then tip four was about just be mindful to give yourself grace, to not judge yourself when you tell your stories about your caregiving journey. If you have tips for experienced dementia family caregivers, please share those on our Facebook page or our Instagram page. The links are in the show notes. As we've come to share. Remember, there's a blog for every podcast. If you go to the caregivers journey.org, take the number of this podcast. There's a blog with the exact same number. We've effectively taken notes for you. That's great. Yes. If you like this podcast, please share it with others who you think it would help. Please subscribe to it. Follow it. We really appreciate it. Emily, thank you so very, very much. We appreciate you. And as we always say, when we end our episodes, we're all on this journey together.