Our guest this week is Emily Killian, a PhD candidate in the department of community and behavioral health at the University of Iowa. She discusses her research on caregivers of people living with Alzheimer’s disease and related dementias and shares how her interest in aging and caregiving led her to study social support networks, particularly among caregivers in rural communities.

The views and opinions expressed in this podcast are solely those of the student hosts, guests, and contributors, and do not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Lauren Lavin:

Hello everybody, and welcome back to Plugged In to Public Health. Today we are talking about an often-overlooked group that plays a critical role in the health and well-being of millions of Americans, caregivers. As the population continues to age and more and more families are affected by Alzheimer’s disease and related dementias, caregivers are increasingly responsible for managing medications, coordinating appointments, providing transportation, and supporting loved ones through the challenges of cognitive decline. But what does support look like for those that are providing the care, and are we measuring caregiver needs in a way that truly reflect their experiences, particularly in rural communities?

To help us answer those questions, we’re joined by Emily, a PhD candidate in community and behavioral health at the University of Iowa. Emily Killian‘s research focuses on caregivers of people living with Alzheimer’s disease and related dementia, with a particular emphasis on social support, social networks, and the unique experiences of caregivers in rural areas. In this conversation, we’ll explore why measuring support is more complicated than simply counting the number of people in someone’s life, why researchers use cognitive interviewing to improve surveys, and why listening directly to caregivers is essential for creating effective programs, services, and policies.

I’m Lauren, and if it’s your first time with us, welcome. We’re a student-run podcast that explores major issues in public health and how they are relevant to anyone, both in and outside the field of public health, so let’s get plugged in to public health. Plugged In to Public Health is produced and edited by the students at the University of Iowa College of Public Health, and the views and opinions expressed in this podcast are solely those of the student hosts, guests, and contributors. They do not necessarily reflect the views or opinions of the University of Iowa or the College of Public Health.

Thank you so much, Emily, for joining us on the podcast today. To start out, could you introduce yourself to our listeners, who you are, what you do? Any background that you want to share is great.

Emily Killian:

Yeah. I am a third-year PhD candidate in community and behavioral health. I’ve been here for about three years now. I moved here a little bit before I started, and I moved here from St. Louis, Missouri. I did my MPH at SLU, and I have an undergrad degree in biology from Illinois State. So I’ve been doing some public health-related things for quite a while now, but during my PhD, I’ve been working a lot with caregivers and Alzheimer’s and dementia-related research.

Lauren Lavin:

Did you always know that you wanted to get a PhD, or did you decide that a little later?

Emily Killian:

I actually was not familiar with public health at all, as an undergrad student anyways. I had a friend who was applying to MPH programs and she told me that she thought I would really like it, so I found this by a whim. And as I was doing my master’s, I was like, “Oh, I really love this,” so I stuck with it. I had no intention of doing a PhD, I don’t know, five years ago.

Lauren Lavin:

That’s crazy. But I always love hearing those types of stories, and there are quite a few students that listen to this podcast, so it’s always interesting for students listening how you end up in some of these paths.

Emily Killian:

Yeah.

Lauren Lavin:

So what do you think you’re going to be doing after? So you’re third-year. You’ll probably graduate after your fourth year. What do you think you’re going to do after?

Emily Killian:

I’m hoping to move to Chicago. We’ll see. Depends on the job market, of course, but I’m hoping to work for some kind of federal project. I’m thinking I’ll apply for things like in the CDC. They have different Alzheimer’s and dementia initiatives, there’s one called BOLD, or different things like in the NIA, which is a branch of the NIH for National Institute of Aging. But I also, of course, will apply to some fellowships and postdocs.

Lauren Lavin:

Got to cast a wide net.

Emily Killian:

Keep the options open.

Lauren Lavin:

Yeah. So you mentioned caregivers, Alzheimer’s, dementia. Can you give a broad overview on what you research and how you came to research that particular area?

Emily Killian:

Yeah. So I knew I always wanted to research older adults as a population. I have always really loved working with older adults. That’s always where I’ve volunteered and everything. But when I was applying to PhDs, I saw Dr. Ashida’s research interests and I really loved what she did. So she does disaster preparedness, and with caregivers who care for people with Alzheimer’s and dementia. So I started helping with that project when I first started as a PhD student, and everything has just gone from there.

So I took the Social Network Analysis class, and that really sparked my interest in what I’m doing now. One of the things we do in that class as a final paper is write up a fake grant, basically. So I was trying to think of something that related to my current project, what I was doing with my advisor, and I just started thinking about my grandparents’ experiences and people in my family. I have a huge family, lots of older adults in the fam, so just trying to think of different things that meant something to me, but also were interesting in research. That’s how I got to this point, but yeah.

So right now I’m doing research with caregivers of people living with Alzheimer’s and dementia in rural communities, and I’m looking at social support, a big, overarching construct, but mostly their social networks, how things are different between rural and urban communities, and hopefully how we can help rural caregivers become more connected.

Lauren Lavin:

Yeah. I always think the best areas of research are ones that have some personal interest to the researcher but are also relevant in today’s world. It sounds like you found that sweet spot for yourself.

Emily Killian:

Yeah, absolutely.

Lauren Lavin:

But for listeners who might not be familiar, what does caregiving for someone with Alzheimer’s or related dementias actually look like, especially in rural communities?

Emily Killian:

So it’s different for every situation. It depends a lot on disease progression. As dementia progresses, your responsibilities as a caregiver could become a lot more intense or maybe unpredictable. So typically, a lot more goes into caregiving than just helping with memory loss. Caregivers would help with managing medications, coordinating care, providing transportation, daily tasks, all of those different things. But in rural communities, all of those challenges are made harder because people live further from town, so there’s that geographic isolation aspect, and then transportation barriers of course come with that. And then there’s also fewer healthcare and social services in rural communities, so all of those things on top of just a smaller population in the town, typically, so that usually means a smaller support network as well.

So, not to say that rural caregivers are necessarily worse off, but they just face challenges that are different than urban caregivers. And so much of our research has focused on more populated areas, so it’s important to make that distinction, but rural communities have tons of strengths and a lot of them report really strong community ties. I don’t know where you’re from, but really strong community ties like interpersonal relationships. So their experiences could be shaped by a really strong social network, but there’s also some constraints that could come with that.

Lauren Lavin:

Yeah. Yeah, I’m from Sioux Falls, South Dakota, but my parents grew up in Vermillion, South Dakota, which is about an hour away from Sioux Falls. And while it’s not entirely rural, probably by definition, it’s a very small town, and I’ve watched that social network that my parents grew up in. It is different in a small town or in rural areas. People really step up for each other. But I think you made a good point about how a lot of this actually does come back to transportation. You can’t just walk across the street to a grocery store. Especially for people with Alzheimer’s and dementia, transportation becomes hard pretty quickly because a lot of them can’t drive, because you lose a lot of autonomy. And then on top of that, all of your caregivers also have to drive farther in order to do things or to help you. So I think that was a good point. When you talk about social support, what are we really talking about in this context?

Emily Killian:

So I think in this context, it can mean a lot of different things. So this is one of the questions that my work highlights, so it’s a hard one to answer. In research and theory, we usually talk about social support theory like the emotional, instrumental, informational, appraisal support. Those are the constructs that we usually talk about and measure. So those are usually a positive interaction, something where someone’s helping you with something. Support might not always be conceptualized or experienced in the same way for all caregivers, and not all support is good support. Just because someone has people around them who could provide that kind of support, that doesn’t mean it always happens or happens in the intended way. It’s a very individual experience, and I think it depends a lot on the context.

Lauren Lavin:

Yeah. So you listed four methods of appraisal. Can you say them all again?

Emily Killian:

Oh, yeah. So emotional support, which that one is typically the one people know, but emotional support is helping you, supporting you with emotional …

Lauren Lavin:

Yeah, like you’ve had a bad day, you’ve got someone there to kind of …

Emily Killian:

… [inaudible 00:09:42] pick up the pieces.

Lauren Lavin:

Yeah.

Emily Killian:

And then instrumental support, which is more physical, tangible things, if you need someone to help you move a couch type of thing. Informational, which is if you don’t know what doctor to go to, someone who would tell you that kind of information, and then appraisal, which is someone who’s going to tell you how it is, give you an opinion, that kind of thing.

Lauren Lavin:

Yeah. The first thing I’m struck with, as someone who also does research, is how do you measure those things?

Emily Killian:

Yeah, so that’s a very hard question. We have a lot of different scales. There’s a ton of different scales that we use that are validated and reliable, all the things, so typically those are the measures that we use. But with a social support network, when you’re asking someone about what does someone do for you, rather than a typical survey where it’s like, “Do you feel supported, feel this way,” there’s two different ways that we can do it. So with my stuff, I’m usually asking people about their network and what people can do for them. So it’s just a little bit opposite of a typical support question.

Lauren Lavin:

Yeah. And you mentioned that there’s a difference between having these people around and those people actually supporting you. So what do you think then is missing or not working in the way that’s currently measuring caregiver support?

Emily Killian:

Yeah. I think a lot of our current tools and measures focus a lot about the number of people that someone can rely on. And usually people assume a bigger network is going to be better, more people around you is better, which isn’t necessarily the case. A lot of the time it depends on the strength of the relationship and what those people do for you, and what you need as a caregiver. So a lot of those measures can miss some of the complexities and contextual factors of those types of relationships, and that’s especially important in rural communities where social norms might be a little bit different than where these measures were made, with urban populations and urban communities.

For example, a rural caregiver might place a lot of importance on being independent and being self-reliant, so our measures don’t have a great way to capture that type of relationship and the way that support could look for someone who feels that way. That caregiver obviously has people around them, but maybe they don’t want to ask for help and add to that person’s burden, but they do have the option there. So there’s just kind of a lot of different ways to look at it.

Lauren Lavin:

Why does measurement matter so much? And how does getting it wrong then affect real people in real systems?

Emily Killian:

Measurement matters because it shapes how we understand the problem and where our resources go in public health. Huge right now, of course. And if we don’t capture this breadth of experiences, then we could underestimate or misunderstand the kinds of support that are helpful to people, or we could design an intervention that doesn’t actually fit someone’s experiences. So then we’re putting programs out into the world that will affect real people and our systems, and we could be potentially misusing our resources and not using them in ways that could be obviously better if we had measures that captured these experiences better.

Lauren Lavin:

Yeah. If you structure an entire program on caregiver support based on only experiences of urban caregivers, there’s a good chance, while it may still be effective in rural areas, it’s probably missing some of the key components that would be most helpful in rural areas. I also think, in the age of AI and technology, it’s so important to have everyone represented in the data, especially as more of these models get deployed across all fields, healthcare, public health, everything. And if we don’t capture and collect accurate data on all of these people, they’re going to be missing in the way that these things are rolled out. So I think it’s extra important with all the technology we’re using, which …

Emily Killian:

Exactly.

Lauren Lavin:

So I know that you also use cognitive interviewing, is that correct?

Emily Killian:

Yes.

Lauren Lavin:

Can you explain to our audience what cognitive interviewing is?

Emily Killian:

Yes. So there’s a few different ways you can use cognitive interviewing. For people that are familiar, there’s a couple different methods that you can use. What I do is I ask participants to walk through the survey verbally and read the question out loud, tell me how you’re interpreting it and how you would answer it and why, that kind of thing. So it’s a qualitative research method, and a lot of researchers use it in that same way. For my project it’s going to be really useful, because that will help me determine how I can adapt what our current survey looks like for different populations, different contexts.

So yeah, caregivers will walk me through our survey, tell me how and why they interpret a question a certain way, and then I’ll be able to go through all of that data afterwards and determine where experiences are missing in a survey, or where things aren’t matching up with the constructs that they should be matching up with.

Lauren Lavin:

Do you do this process prior to sending out a survey to a bigger population?

Emily Killian:

Yes.

Lauren Lavin:

Okay.

Emily Killian:

So this is the first step in a much larger-scale validation type of study. Ultimately, if we do have to adapt the survey, then it would have to go through several different kinds of validation and reliability testing.

Lauren Lavin:

And then what other types of processes do you use to do your research? So you do cognitive interviewing surveys, obviously. Do you use any other types of methods?

Emily Killian:

So we also do in-depth interviewing, so just more semi-structured. It’s much more like this type of thing. I’ll ask them a question, they give me their answer. The cognitive interviewing is much more on them, so I’m just sitting there listening, observing. So we do both types of interviewing in my dissertation research, but yeah.

Lauren Lavin:

So then, all of that being said, to set it up, what has your research found so far? Have you seen any differences in rural versus urban caregiver experience, and what type of support are they looking for?

Emily Killian:

So I think that rural caregivers describe support in ways that go beyond formal services. So it’s usually much more of a focus on informal relationships. I think that could be due to several different factors, maybe the limited services, maybe the distance from town, but many of the caregivers that I speak to, they don’t feel isolated or unsupported necessarily, which is great, of course, and a lot of those caregivers have strong and dependable networks. So like I said before, it’s a very individual experience, and it’s deeply shaped by context.

So it’s also one of those things with research. People who are choosing to participate in a study, they might be more supported in general so they have more capacity to do things like this. So there’s also things like that to think about, especially with this type of research. But so far, I of course hear stories from people who aren’t feeling so supported. But I think overall, a lot of the caregivers I talk to have pretty good situations going on. I think a lot of what we hear is just the difficulties of being far away, not that they want to be closer.

Lauren Lavin:

I think that’s always an interesting point with rural research in particular, is that sometimes from the outside looking in, it can be like you want to solve their problems and sometimes they’re like, “We signed up for this. We like [inaudible 00:17:59] and we like living farther away.” I think that’s a great point. All of that being said, how do you think your findings can realistically influence interventions or services or policy for rural communities?

Emily Killian:

I think obviously the goal ultimately is to create and support interventions that can better align with caregivers’ real experiences. We can identify people who are at risk for isolation or unmet needs, so that we can tailor our programs more effectively, and I think that could be one of those trickle-down effects and hopefully would impact the caregivers’ health outcomes in general. So yes, they’ll feel more supported, which will ultimately better mental health, better overall health outcomes, and that’s really the goal.

Lauren Lavin:

Yeah. And how do you contextualize caregiver health in the broader system? Why is it important and why should we care about it?

Emily Killian:

Yeah. Caregiver health, it directly affects the health of the person living with dementia. We have a ton of caregivers. They make up a huge portion of Iowa individuals in general and also the greater national averages.

Lauren Lavin:

Yeah. So many people are caregivers these days.

Emily Killian:

Yes. And of course, unpaid family caregivers. There’s a ton of different impacts that can have financially, but really I think the biggest impact is the one it has on the person that they’re caring for. So if a caregiver is doing better, the person they’re caring for is also going to do better.

Lauren Lavin:

A rising tide lifts all boats, right? Okay, final question. What’s one thing you wish people better understood about caregivers and the support that they actually need?

Emily Killian:

I think it’s really important to just listen to caregivers, or any population that you’re working with, and their experiences. I think it’s so important to remember that they’re the experts, and they know best what they need. So hearing from these people how they interpret support, what they feel is support and what could be more supportive for them, is the most important thing. I think that it would be great if people understood that more, in academia and in general. It’s just so important to really understand that your audience, your population, is the expert.

Lauren Lavin:

Absolutely. Thank you, Emily, so much for chatting with me today. I really appreciated it. I learned a lot and I’m sure our listeners did too.

Emily Killian:

Of course. Thank you for having me.

Lauren Lavin:

That’s it for our episode this week. A big thank you to Emily Killian for joining us today. And one of my biggest takeaways from this conversation is that support is much more than simply having people around you. It’s the quality of relationships, the type of help available, and the context in which people live, all shape what support looks like in practice. Emily’s research reminds us that if we want to design effective programs and policies, we first need to understand how people actually experience caregiving in their daily lives. I also appreciated her emphasis on listening to caregivers themselves. Whether we’re conducting research, developing interventions or making policy decisions, the people living these experiences are often the best experts on the support that they truly need. This episode was hosted and written by Lauren Lavin and edited and produced by Lauren Lavin. You can learn more about the University of Iowa College of Public Health on Facebook. Our podcast is available on Spotify, Apple Podcasts, and SoundCloud. If you enjoyed this episode and would like to help support the podcast, please share it with your colleagues, friends, or anyone interested in public health. Have a suggestion for our team? You can reach us at cph-gradambassador@uiowa.edu. This episode is brought to you by the University of Iowa College of Public Health. Until next week, stay healthy, stay curious, and take care.