Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri, joins us to discuss how dementia caregiving affects sleep, family relationships and financial well-being. She shares insights from her research on the hidden toll caregivers face and the strategies that can help them recharge.

Jeffrey Snyder, Broadcast Retirement Network

Well, Dr. Gilligan, thanks so much for joining us. Really appreciate you coming on the program this morning.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Great, thank you for having me.

Jeffrey Snyder, Broadcast Retirement Network

And we’re going to talk more about the research that you and the team at Mizzou are doing. I want to start off with a baseline question because we’re talking about caregivers this morning and caregivers of those with dementia. I have to imagine, I mean, from what I’ve read, caregiving is a very difficult job.

It creates a lot of uncertainty, a lot of financial problems, a lot of stresses and challenges. I can only imagine what it’s like caring for somebody who might have dementia or Alzheimer’s.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah, so those of us who do caregiving research, we talk about how challenging caregiving is across the board, but research consistently shows that caregivers for older adults with Alzheimer’s disease-related dementia tend to have the kind of the hardest job. It tends to be the most stressful, it’s the most demanding, and it can have the most consequences in terms of physical and psychological outcomes.

Jeffrey Snyder, Broadcast Retirement Network

I would imagine that there’s almost like, you’re watching a loved one, could be a wife, a husband, spouse, brother, sister, whatever, and they were full of memories, they were full of personality. You’re almost disconnected if you see that person every day. I would imagine you could feel lonely and lost.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah, so a lot of the caregivers that I have worked with and have participated in my studies will describe this sense of knowing this previous version of this person, and then also Alzheimer’s disease and related dimensions are progressive diseases, so they know that who this person is today is not going to be the person they are tomorrow as well. In other contexts of caregiving, we have some realization that maybe things could get better, we can provide some treatments, and we are starting to notice new treatments for Alzheimer’s disease-related dementia. However, where we are right now is most people are remembering who this person used to be, whether that be a spouse, a lot of times a parent, and knowing that the disease is going to progress further.

Jeffrey Snyder, Broadcast Retirement Network

You know, stress, doctor, presents itself in so many different ways. One area that I took away from the research and the area that you’re going to be studying, sleep. I know that when I’m under pressure, I don’t care for a loved one.

I’m married, but I don’t care for a loved one day-to-day. When I feel pressured, I lose sleep. Is that something that is typical of a caregiver?

They can’t relax.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah, yeah. So there are a lot of factors that can play a role in our sleep health, but when we think about caregivers, particularly those who are caring for someone with Alzheimer’s disease-related dementia, stress is definitely something that can play a big factor, as well as we’re caring for someone who themselves may have their own sleep disruptions. We’re kind of on call, so we’re wanting to be there, we’re wanting to take care of them, and we’re worried about the things that are happening during the day, whether those be financial stressors that come with caregiving, the instrumental tasks, and just the emotional toll of caregiving.

So we are really interested, particularly in spousal caregivers, so someone caring for a husband or wife, and sleep is a modifiable health behavior. So we are planning to deliver interventions to provide cognitive behavioral therapy that can help people to modify that sleep. When we sleep better, we get better outcomes in terms of our overall health, including our own cognitive functioning.

Jeffrey Snyder, Broadcast Retirement Network

So how, if I could ask you, and this was not in your research, but I just piqued my interest, I mean, are there things that you can do to calm yourself? I mean, that’s like preaching to the choir, right? We all know that we need to get sleep.

I would imagine that there are ways to modify your behavior before, during, and after sleep in order to get restful sleep, rather than use prescription drugs and medicines, which I guess can be helpful in the short run, but you probably don’t want to be taking a drug for a long period of time to help you sleep.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah, yeah. I mean, there are lots of things that folks can do, and different approaches will work better for different people, but the program that we’re working with is really focused on being aware of your bedtime routines. When are you getting up?

When are you going to sleep? What does that look like? What are the practices?

And then trying to modify them. So, okay, being aware, yep, you know what, I was sitting on my phone and I’m doing that every night. I could put that phone away and I could just try to be ready to go to sleep.

So it really encourages folks to think about how are they sleeping and gives them strategies for getting better sleep. I think the other piece of this is in the context of folks who are caring for someone with Alzheimer’s disease-related dementia. Sometimes we might feel, oh, there’s more I can do.

And so being aware of, you know, maybe laying in bed, worrying about what the next things you can do is not going to be the best thing for you and for the care that you’re providing for your spouse.

Jeffrey Snyder, Broadcast Retirement Network

Very good point. I want to ask you, among your research candidates, the people that you are doing your testing and research on, that sounds very like invasive, but that’s not meant to be. The people that you’re observing maybe, you’re not, this is not like a Frankenstein’s monster where you’re actually physically testing them.

But do you see people of all age ranges, even mature use technology scroll on their phone? Is that something that, you know, older Americans, mature Americans are doing?

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah. So when I think about that, well, first of all, let me say, you know, I always think about participants by study. I’m always really grateful because these are people who are already, as we noted, really busy and they’re willing to give their time to share their stories and experience to help others.

And I do research primarily on adult children who are caring for an older parent and then also spouses. So someone who’s caring for a husband and wife in the context of Alzheimer’s disease related dementia. And one thing I always note is participants in the work I do, they really range in age.

So I’ve had participants in their early thirties and folks who were in their seventies. And so their use of technology can vary, but I think it’s becoming much more common for people to use this technology, one, to keep in contact. And so we definitely saw that as well, as people became more comfortable using technology during the COVID-19 pandemic to FaceTime, to send text messages, those types of things.

But also people are relying on technology more to seek information. And so they’re going to the internet, they’re going to different sources to try to find information to provide better care to their loved one.

Jeffrey Snyder, Broadcast Retirement Network

Yeah. And I certainly use, I’m a very, when I go to sleep, I like to sleep to a Mike Rowe narrated documentary. He’s got like the perfect pitch for me in terms of winding down.

That’s probably not what you want to do when you go to sleep. That probably is very disruptive. Let me ask you that.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah. I was just going to say, if you’re using it and it’s a healthy way of like, you’re listening to some music and that’s kind of your bedtime routine. But if you’re getting on there because you’re wondering, Oh, did I, what time is that doctor’s appointment?

I need to look at my schedule. We can use technology for different purposes. So being aware of that.

Jeffrey Snyder, Broadcast Retirement Network

Let me ask you on that point. And then I want to ask you, I want to ask you one more follow-up on technology. And then I want to go to children as caregivers, but let me, cause that’s an area of focus for you, as you said, how are you seeing people?

Are you seeing caregivers or loved ones use AI? Because I, you know, as I’ve said a gazillion times, the audience probably hates me for this. AI is so pervasive in our society, chat GPT, Gemini, whatever people are using.

Are you seeing people use that in order to get information or to figure out how to care for their loved one or maybe occupy their loved one?

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

What I’m seeing so far is an interest. So I think most of the caregivers that are using or seeking information, they’re doing it with genuine concern and wanting to get the most up-to-date information. And, and so I think people expressing and sometimes asking questions, could I, could I turn to AI to get some answers, to get some additional information?

So where I see folks right now as just kind of an interest in wanting to do that. And then also caregiving can also be isolating and you feel like no one else is really understanding, knowing what you’re going through. It’s a, it’s a 24 hour, seven day a week job.

And so knowing that that’s also available. So I could, I could go on at any time and ask those types of questions, I think is appealing to some of the caregivers that I’ve been talking with.

Jeffrey Snyder, Broadcast Retirement Network

Uh, uh, this has occurred to me because my cat’s outside the studio screaming for me. We have a kitten, she’s two years old. Uh, what about pets and caregiving?

Uh, is that something that, does that help with that isolation? I mean, nothing is as loving as, as your parents, of course, but also a dog or cat or, or, or a pet of any type. And is that something that is therapeutic?

Um, is that a recommended approach for caregivers and, or those that might have Alzheimer’s, um, precipitated dementia?

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah, I think that’s something that we do see in the research is providing companionship, um, providing kind of sense of purpose. Um, in general, our pets, uh, they give us social interaction. They also, they need to be taken care of.

Uh, they need to be feds. Uh, if we have dogs, they need to go for walks. So there can be a lot of social and health benefits to pets, definitely, um, in the caregiving context and for older adults themselves.

Jeffrey Snyder, Broadcast Retirement Network

Okay. Well, I guess she’s going to have to stay out there and scream while she’s literally yelping out. You probably can’t hear it on, uh, on the show.

Uh, let’s I would get up. She’s come on the show before we’ve actually had someone talk about meows, the cat meow, what that means, because apparently it’s very independent to the animal. Anyway, as I digress, I want to, I want to finish up on children as either caregivers or recipients of care.

This is an area that you have looked at, uh, you and your team, I should say have looked at what’s the impact. I would imagine depending on age, whether you’re an older adult child or a younger child, 18, 16, whatever the impact is going to vary, but, but either way, you’re going to be impacted if you’re a caregiver.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Yeah. And, um, I think when we think of the context of, um, Alzheimer’s disease related dementia, one of the things we can think about is early onset. So, um, some people may become caregivers at a very early age, um, for a parent with some type of dementia.

And so, um, as I mentioned in our work, we have looked at caregivers who themselves are, um, in their early thirties, um, all the way to the folks who are in their seventies. Um, and I mentioned, we looked at adult children and spousal caregivers, but some of the caregivers in their seventies were caring for a parent who is in their nineties. So it really does, um, carry.

So they themselves are, um, in their own aging experience and still providing care to, to a parent. And so there’s a lot of considerations there. One of the things that, um, my team here, um, particularly with my, uh, postdoc, Hanumori Skablo, we have been looking at, um, differences between adult children who have siblings and those who do not.

Um, so there’s a growing demographic trend, um, increased prevalence of people who are only children. Um, so who don’t have siblings. And, um, one of the things we’ve been finding too, is that those are different caregiving experiences.

So, um, being an adult child caregiver is unique depending on what age the onset of the disease happens. Um, but we’ve been really focusing in on what it looks like if you have other siblings in your family to navigate that care, or if you’re doing it alone. Um, I think one thing that we found that might be of interest to folks who are listening on the show, um, we found that only adult children, so those without siblings, they are taking on a higher financial burden.

Um, so they are, they’re kind of going it alone. Um, and that might also, uh, one thing that we would be interested in is what does that mean for their own, um, financial wellbeing as they age, as they’re investing, um, into their parents, um, at an earlier stage in their life course. Um, I do want to put the caveat that that doesn’t mean that things are always better when there are siblings around.

Um, so only adult children carry the financial burden, but we are seeing that people with siblings, um, are also experiencing additional conflict and stress, um, because they’re having to make those decisions together. And, um, those of us who have siblings would know this, uh, sometimes that’s not always easy to think about how, how do we make those decisions? And one person may decide, um, yes, I think it’s time for our parent to go into a residential facility, another adult child might feel really strongly, let’s, let’s keep our parent at home.

Um, and so that’s added stress that, um, we’re not seeing in people who are only a, only adult children without siblings.

Jeffrey Snyder, Broadcast Retirement Network

Yeah. I mean, I think that’s an, you know, the planning part is a big part, um, as you’re, as you’re saying, and it probably is best to start those conversations sooner rather than later. So you’re not reacting to an emergency event, but, uh, really, really important and interesting research.

So we’re going to have to leave it there. Thank you so much for joining us. Thanks for doing that research and bringing it to the, uh, to the four.

And we look forward to having you back on the program again, very soon.

Dr. Megan Gilligan, Associate Professor of Human Development and Family Science at the University of Missouri

Great. Thank you so much for having me.