Hello and welcome to Retrieving the Social Sciences, a production of the Center for Social Science Scholarship. I'm your host, Ian Anson, Associate Professor of Political Science here at UMBC. On today's show, as always, we'll be hearing from UMBC faculty, students, visiting speakers, and community partners about the social science research they've been performing in recent times. Qualitative, quantitative, applied, empirical, normative. On Retrieving the Social Sciences we bring the best of UMBC's social science community to you.
Here in Maryland we have four spectacular seasons. After a springtime bursting with flowers, sunshine, and the return of our avian waterfowl, we find ourselves basking in the scorching heat and humidity of a Chesapeake summer. While those hot days and nights might sometimes seem interminable, eventually, we find ourselves in the golden glow of autumn, before the frosty chill of a Maryland winter tantalizes us with the hope that snowflakes might softly fill our streets and parks. As we get closer to the end of our first season of Retrieving the Social Sciences, the changing of the seasons also reminds us of an inevitable fact of life. We're all getting imperceptibly older, each and every day. Aging is a beautiful part of what makes us human. However, oftentimes this process is overlooked in our personal lives, and in scientific research. The elderly, who have experienced this journey more fully than any of the rest of us are more than founts of wisdom for younger generations. They also have important lessons to teach us in the realm of the Social Sciences.
On this week's episode of Retrieving the Social Sciences, I'm delighted to feature a conversation I recently had with Dr. Laura Girling, Director of the Center for Aging Studies at UMBC. Not only is Dr. Girling affiliated with the Hilltop Institute at UMBC, she is also an assistant research scientist for the Department of Sociology, Anthropology, and Public Health. Her research specializes in aging populations living in contexts where they're vulnerable. Her numerous works include studies of older adults living with Type 2 diabetes, and those living alone with dementia to name a couple of topics. Dr. Girling recently made headlines when the National Institute of Aging, a division of the National Institutes of Health, awarded her over $750,000 in grants to further her research. Using this funding, she's currently studying how populations with dementia live, especially those who live alone. In our recent conversation, we learned much more about aging, Alzheimer's, and related dementias, and the ways in which social science can help us improve the lives of elders in our communities. Let's take a listen.
Dr. Girling, I want to thank you again, so much for taking the time to be with us today. I'm really excited to hear more about your research. And I certainly want to get into some of the details of your work on aging and dementia. Before we get into too many details of the work that you're doing. I kind of want to ask a little bit about your background and kind of how you got interested in these topics in the first place.
So I have always been interested in the aging population since I was very little. I knew whatever I did that I wanted to work with older adults. So that has been something that's been very innate with me. In terms of dementia, I was introduced during my master's in clinical psychology, I did a rotation in neuropsychology at Johns Hopkins Hospital. And I worked in the critical function lab and the medical psychology clinic. And there I worked with renowned experts in the field of dementia like Jason Brandt and Marilyn Albert and I was part of their projects, all of their dementia projects and actually ended up running most of them towards the end. And that exposure, when I knew I guess it was two years or so working with them. I knew that I wanted to do dementia research of my own and the potential to be funded by NIH, I was truly hoping would be something I'd be able to do. And that did come to fruition.
Yeah, that's wonderful. And I certainly want to talk a little bit more about that grant in just a moment. But yeah, I think that you really strike it in that response. The sort of fact that this research is really kind of straddling two worlds in some respects, right, you've got kind of the medical side of research on Alzheimer's or other forms of dementia. And of course, that is probably what most people, kind of a general audience, might be immediately thinking of when they're thinking of this kind of research. But of course, this is a podcast about the social science and you also, I think, could probably be considered a social scientist as well. And I want to make some inroads into that question about how your research investigates these kind of social understandings of the disease, how we might be able to better improve outcomes for people not simply through, you know, investigating the actual medical sort of aspects of the disease, but also understanding all the social science that is peripheral to those to those understandings. Can you speak a little bit on that topic?
Right. The medical aspect of dementia care is extremely important, whether it's neuro psychometrics or the actual biomarkers. Super important. But over the last 10 years, there is more of an acknowledgment that dementia is a socially embedded phenomenon. So neurological factors interact with life experiences, things like threats to autonomy or safety that commonly accompany dementia really depend on people's personal understandings of their conditions, lifestyles, attitudes towards support, and also their interpretation of their life values. And that's sort of what we're doing. Our research is largely related to, you'll notice in a lot of the medical research that people call individuals subjects or patients. We talk about our individuals as the experts, they're our informants. We do interview-based studies where we look at what their perspectives are in relation to their life. What's important, what's not in terms of medical care, outcomes, etc. from their perspective. Persons with dementia, as well as caregivers. So we really put them in the driver's seat of telling us what's important to their care, what's important to their futures, what's important in terms of outcomes for them. And we're unique in that everybody, I would hope, values their voices, but we truly value their voices. We keep everything very close to their words, there's very little inference in terms of methodology. It's very descriptive. And we let their words speak for themselves in terms of our publications and how we we publish our findings.
That's a fascinating distinction that I certainly want to continue to highlight. This idea that instead of subjects or patients, right, we're thinking about these individuals as informants or experts. I think that is certainly something that other people who have come on this podcast have sort of echoed a little bit in some of their research as well, right. I think that's a trend maybe broadly in the social sciences, to really start to value the expertise of the people that we're actually interacting with, rather than to approach them from this extremely top-down perspective as kind of the person in the white coat or whatever. To try to draw, you know, knowledge from people by meeting them on the level. I think that's a really fascinating insight. And, you know, I also want to get into this question of, of the timeliness of this research, especially in the present era, right? Not only I think, are these developments, in sort of the approach, important, but I know that you've written about and you've spoken at length about the urgency of elder care research and Alzheimer's and dementia research in the era of COVID-19. I want to ask a little bit about your take on that, sort of why this research is so timely and important given that we're now in a sort of context, where not only is the medical care aspect, you know, somewhat challenged by COVID, but also our social lives are being strongly influenced.
So I recently did receive funding from NIA to study COVID in community dwelling persons with dementia. And they put out a special call because this is clearly such an important topic. So what we're doing is we are looking at community dwelling persons with dementia and their informal caregivers and seeing how they're navigating and negotiating their physical environment during the pandemic. How are social distancing parameters impacting them? And what we're seeing so far is that people with dementia that live alone in the community, particularly those that resided alone in the community, they really required in-person, in-home care to be successful. And they also required access to adult day services. So, are you familiar with, ADS is Adult Day Services are where individuals can go for several hours a day and have some type of cognitive stimulation or social stimulation with other older adults. And during the pandemic, the in-home care services have largely closed and same with adult day services. So we're seeing that this population, as they describe, has been left behind during the pandemic. And from what we've seen so far is the outcomes in terms of how they've described them or have been relatively poor. Where a lot of these individuals have actually had to transition to institutional care settings because they cannot successfully live in the community alone without these in-person resources. And while virtual aspects maybe work for you and I, it's very, very difficult to engage in the ADS programs or in-home health care when you have dementia and you're residing alone. And a lot of our population too, don't have access to computers or smartphones. And this has been a really, really interesting project. But we'll continue, it's still ongoing. So we're finding out more and more. But this population has really described themselves as feeling left behind during the pandemic.
Yeah, that really strikes me as an incredibly difficult situation for anybody who's living with or any caregiver who's attempting to help individuals who are afflicted. I want to ask a follow-up about that. Because, you know, I think this is something that a lot of people are probably not thinking about in their daily lives unless they know someone personally who's been affected in this way. What proportion of people suffering from Alzheimer's and related dementias are living alone? Is this a common phenomenon? I mean, it seems. I think my my sort of mind immediately assumes that people are getting, you know, institutional care if they're if they're experiencing this. But you know, according to what you're telling me, it seems like this is maybe more common than than we might otherwise think.
Yeah, so that's what I, when I've lectured before that people often think people with dementia are in an institutional setting or are homebound. So, persons that live alone in the community with dementia, it's estimated that 1/3 of community dwelling persons with dementia actually reside alone in the community. That's a large number. It's really an elusive group. They're hard to recruit. Largely, they're skeptical of participation and among other factors. But yes, 1/3, it's estimated about 1/3 of community dwelling persons with dementia live alone, so do not co-reside with anybody. So it's a large, it's a large population. An under studied population.
Absolutely. And I think you can really see how those two things, right, that not only are these people sort of already somewhat invisible to the communities in which they live, that they would be under studied as well. That seems like it's a compounding problem that hopefully your research is able to address in the future. So obviously, really important stuff. And, you know, I think we're all really excited to hear more about what you're going to find with this grant, the NIA grant, which is etitled: Aging at Home Alone with Alzheimer's and Related Dementias. And of course, I want to congratulate you on this grant. Again, I want to ask maybe, are there any additional sort of projects that you're planning on doing that we haven't really talked about yet that further extend this research with this grant.
The pandemic has shifted and changed everything, but we have applications in to look at community dwelling persons with dementia that are part of the LGBT community. That'll be under review. We're hoping that we can get funded for that. And looking at how we're hoping to partner with Alzheimer's Association, among other community networks, to recruit. Hopefully, that will be funded. Fingers crossed. There are a number of calls asking for the particular type of research that we're proposing. But I think that the aging at home alone study is going to really be the grounds for a number of different projects moving forward, a number of collaborations across institutional settings. We are hoping to collaborate with Hopkins and a number of other Maryland-based universities so that we can hopefully use our data as pilots for an R01, a much larger multi-site study, looking at persons that live alone in the community with dementia on various aspects.
Wow, well, that really sounds like a worthy project and something that, you know, we're all rooting for you to hopefully achieve, because that would be, I think, very vital research that people need to know about. And I think that certainly this idea of studying people who are suffering from these diseases, living at home alone, but also compounded with those issues, right, people who are coming from historically marginalized populations, or people who are otherwise, you know, affected by sort of social stigmas. I mean, that could be an incredibly valuable and vital sets of findings that would would make a real difference in people's lives. Speaking of findings, I want to sort of rewind back just a little bit and ask you some more about the process of your research, you know, on a podcast about the social sciences, we're always going to get to some extent into the nitty gritty of the process of research, and I want to know a little bit more about your methodological approach. I know we've spoken a little bit already so far about the difficulty, perhaps of recruiting participants in studies like this, but when you manage to get participants into these studies, what exactly do you do? What's the what's the process, I guess, for studying these individuals from a methodological perspective?
So again, COVID's changed everything. What we would do is for a lot of these studies, we would go into their homes and do home assessments. So we would do some neuropsychological assessments to look at their baseline cognition. We would go around their home, they would show us adaptations to their home that they've done that have helped them to either be successful or unsuccessful in terms of residing at home alone, and then we would do the interview-based portion of the study where they could tell us about every aspect of our life relating to care. And what we do, that's all transcribed and recorded. And we use a program called Atlas TI and we systematically sort through the data. We put anchors, code anchors, and texts. Are you familiar with Atlas? Or any of the...
if you could describe a little bit for our listeners, that would be fantastic.
Yeah. So Atlas is a qualitative software program that does data management, but also analytics. And so what you do is you can go through, you can do many things, but what we do is we go through the data line by line and provide codes. So anchors in the text relating to topical ideas. And when you do that at that level, and then you interview, let's say, five dozen people, you're able to look for commonalities based on this anchor to data for systematic themes. And you can run different models within the program as well. And this is actually something that I encourage students to try to look at these programs and UMBC actually has a version of Atlas. In Vivo is for free for the students. And I always encourage the students to get out there and try to use their own data and sort through the program since it's free to try to do some of their own qualitative methods as well. A little off topic there.
No, that's actually you're anticipating my next question, which is a question that I always ask individuals who come on the podcast, of course, obviously, your research is the focus of today's episode, and we want to learn more about what you're doing. But we also, I think, want to remain aware that in your role at UMBC, you're also a teacher as well. And so we want to know a little bit more about sort of how you would, you know, give advice to any students who might be interested in pursuing a career in the Social Sciences in the future? Do you have any words of wisdom for people who are trying to get involved in social science research?
I think to actively get involved is a great thing. That there are so many opportunities on campus, so many principal investigators, or people that have internal funding, that would love to train students. There's always room for students to come on a project. And I really encourage students to reach out to individuals, and to try to get onto a project, whether it's volunteering or working, try to get that exposure, because it's sort of like baby steps. You get that exposure, you realize you do or don't like that type of researcher's methodological approach. And then you can go and work with somebody else. It's a great way to add things to your CV or your resume. And to, you know, build your repertoire of what you can do in terms of as a researcher. And it'll, even if somebody doesn't become a researcher later in life, it still is a very, very good experience. And there's so many people UMBC that are willing and encouraging of including students on their projects. And also UMBC does, like I was saying about Atlas. We have resources at UMBC. That free resources for students, and I say utilize those free resources. And even Atlas itself, which is not part of UMBC, they offer students free training sessions and free seminars, webinars, to receive training. There's free online videos, and so people can train themselves. So I, I say for students to try to utilize these services as well as these principal investigators at UMBC access. Long-winded.
Not at all. Reach out, get active, ask questions. And you know, the worst that can happen is somebody might say no, and you try again later, right? That seems like fantastic advice. Dr. Laura Girling, I want to thank you so much again, for taking the time to talk with us today. We really hope that you wind up getting those additional grants that you've applied for.
Thank you for having me.
Campus Connections (x6)
It's time now for a regular segment. This is Campus Connections, the part of the show where we connect today's feature to the work of other scholars at UMBC. Today's segment features a new article out in PLOS One featuring a notable UMBC co-author. The paper uses interview methods to better understand the practices of caregivers of patients with dementia, specifically dementia with Lewy bodies, a common cause of progressive decline and independent living capability. Based on extensive interviews with 25 caregivers and 20 patients suffering from Lewy body dementia, the authors were able to identify pressing needs for future medical and social scientific research on dementia, including better information about symptoms, ways to raise awareness, and ways to improve daily quality of life. Contributing to the study was UMBC adjunct faculty member Tabassum Majid. Dr. Majid, a UMBC alumna, returned to the Erickson School of Aging after completing an MA in Aging Services. Dr. Majid has many additional professional affiliations in her work combating Alzheimer's, and it's great to see that she's also able to contribute to social science research on aging.
That'll do it for this episode of Retrieving the Social Sciences. Until next time, keep questioning.
Retrieving the Social Sciences is a production of the UMBC Center for Social Science Scholarship. Our director is Dr. Christine Mallinson, our Associate Director is Dr. Felipe Filomeno, and our production intern is Jefferson Rivas. Our theme music was composed and recorded by D'Juan Moreland. Find out more about CS3 at socialscience.umbc.edu and make sure to follow us on Twitter, Facebook, Instagram, and YouTube where you can find full video recordings of recent UMBC events. Until next time, keep questioning.
