Episode 147: Caring For Family Members With Dementia

Amanda Cooper is an assistant professor in the Department of Communication and her research focuses on the ways in which individuals and families navigate difficult transitions across the lifespan, particularly at the end of life. She has recently published a study in the Journal of Family Communication about what family members can do to maintain the personhood of their family members who have dementia. The topic is particularly timely as September is World Alzheimer’s Month and Sept. 21 is World Alzheimer’s Day. The study has specific tips, like maintaining a connection with the person by saying phrases like “I love you.”  Amanda is a relatively new member of the UConn community and talks about how much she enjoys being part of the institution and the welcoming environment it provides to researchers and educators.

Listen to Episode 147 on Podbeam

Mike: Hello everybody, welcome to another episode of the UConn Podcast. It’s Mike Enright from University Communications, joined by Jacie Severance from University Communications. Jacie, good to have you here again today.

Jacie: So great to be back, thanks for having me again, Mike.

Mike: Our pleasure, our pleasure.

Our guest today is Amanda Cooper, an assistant professor in the Department of Communication here at UConn. Her research focuses on the ways in which individuals and families navigate difficult transitions across the lifespan, particularly at the end of life. She has recently published a study in the Journal of Family Communication about what family members can do to maintain the personhood of their relatives who have dementia.

The study offers specific tips, like maintaining a connection with the person by saying phrases like, “I love you.” The topic is particularly timely as September is World Alzheimer’s Month and September 21st is World Alzheimer’s Day. Her recent publications also include coping with loss and caregiving and how social isolation can lead to relying on alcohol use.

Amanda earned her undergraduate degree from Utah State and her master’s and doctorate from the University of Arizona. So, Amanda, thank you for joining us today and welcome to the podcast.

Amanda: Thank you for having me, I’m excited to be here.

Mike: So, give us an overview of your most recent study that deals with something that a lot of families deal with, their loved ones have dementia, and what they can do to kind of navigate that process.

Amanda: Yeah, the study was inspired by the idea of personhood, which is the idea of supporting someone’s sense of self and feeling valued in themselves even as they progress through dementia.

For listeners who are less familiar, dementia is an umbrella term. It includes Alzheimer’s disease and other forms of cognitive decline that usually occur at the end of life and with age. These diseases are really challenging because they’re progressive and prolonged, so they last for a long time.

The person with dementia changes in their behavior as the disease progresses. One of the main things is that they lose the ability to communicate as they did prior to dementia.

With this study, we were interested in seeing how family members can support that sense of personhood—feeling good about who you are as a person—as they’re providing care and as their family member shifts and changes.

What we did is we listened to conversations between individuals with dementia and their family members and paid attention to what those family members were doing to support or affirm personhood.

We found a number of things. One big thing they can do is remind them of who they have been throughout their life.

Some of that could be, especially early in the disease trajectory, through storytelling: “Tell us about this event, tell us about this part of your life.” Or it could be about reminding them. If they don’t remember anymore some of the things they accomplished, maybe telling them, “You know, you used to run a hospital. You did all these really impressive things, you won these awards, you were a really kind person, you were really smart, we loved to go to you for advice.”

So, reminding them of all the good that they did in their lives or reminding them of the events of their lives—that’s a way of affirming who that person is and who they have been.

Another thing that people would do was provide support and prompts in conversation. A person with dementia, one of the things that can be challenging is generating ideas and speech. Sometimes they get stuck a little.

So, the questions would go something like, “Could you tell us about where you’re from?” “Oh, where I’m from?” “You know, where you’re from, like maybe Brooklyn,” giving a little prompt to get them started. Some of those little helps in conversation can help the person with dementia then pick up the story.

One of the tricky things with some of these tips is that some things work early in the disease trajectory and stop working as a person progresses, and some things are better later but not as good earlier.

We found that giving little prompts is less helpful earlier in the disease trajectory when that person can come up with those things by themselves. We found that when family members would fill in words or help without being asked, that seemed to make the person with dementia feel less confident in that conversation, like, “Oh, I’m sorry, I’m giving you bad answers,” because they keep being corrected. That’s usually a sign that this person could probably talk on their own, you don’t need to be prompting them.

On the other hand, occasionally the family members would be asking questions repeatedly, like asking the same, “Do you remember this? Do you remember this? Do you remember this?” And the person with dementia would have difficulty responding. That’s probably a sign to take a step back in that conversation and maybe provide some prompts like, “Do you remember where you grew up? Brooklyn, right?” Giving some of those helps.

Another really important thing in these family relationships is affirming that relational connection. Saying, “I love you,” saying, “Thank you for being a great mom.” One of the things that a lot of them did was reminisce together. Rather than asking the person with dementia to just tell the story, they’d say, “Do you remember our trip to Morocco? We did this.” And then they’d reminisce together. So, there’s some helping in telling the story and reaffirming that connection by reminiscing about their lives.

Jacie: You know, it seems like this is becoming something more and more prevalent. It’s touching a lot of people and a lot of families. What are the effects on a person or a family member who’s a caregiver for someone with dementia or Alzheimer’s?

Amanda: That’s such a good question, Jacie. I mean, it’s really difficult. It’s a really hard thing to have this person in your life and you have been in their life for many years, right? These are usually your parents or your spouse or romantic partner who you’ve been with for a long time.

This happens in the context of these relationships that are well established and these relationships where we feel like we know what to expect from the person. And then what dementia does is it comes in and it shifts their behavior in ways that are usually frustrating and also really, really challenging to see.

A lot of caregivers I’ve talked to mention the sense of grief and loss of who that person was. Like, you know, I used to always be able to talk to my mom about everything. We can’t have those conversations anymore. Or, you know, we used to do these things together, but they can’t do those activities anymore. So, there’s this sense of loss that happens.

There’s also a lot of frustration often for these families because the person is behaving in ways that are unusual for them, and that’s usually frustrating. Like, why are you asking me this question again? I’ve already told you this. Or why would you say this? You would never say something like that. These behaviors that are coming from the disease are usually surprising, frustrating, and really heartbreaking.

So, it can be really challenging on that emotional and relational level. And then there’s just the whole burden of providing care. We know that providing care for someone is a lot of work. Anyone who’s a parent knows it’s a lot of work to provide care, yes.

But then you have the added challenge of this being an adult who is used to being independent. So, you have to have some really difficult conversations about like, Dad, I don’t think you should drive anymore. That’s a hard conversation to have and can cause a lot of hurt feelings in a family. Or, you know, it’s one thing to change diapers for a child, but to change diapers for your parents is a whole different business.

So, it can be really, really challenging for these families. And I think in my research, one of the things I hope to do is find ways to give them tools to make it better. So, okay, you want to have a relationship with this person who you’ve loved for all your life, and how can you do it as they change? And how can you do it as their behaviors shift?

Mike: So how did you develop an interest in this type of research and work, Amanda?

Amanda: It really came back from my experiences with my own family. When I started grad school, my two grandparents on my dad’s side were beginning their end-of-life journey. They lived in a cabin in the woods near Yellowstone National Park, a really difficult place for caregiving, far away from any hospitals.

My dad is one of 10, and I was kind of observing the family. Our whole family system was revolving around the care of our grandparents. Both of my grandparents had a touch of dementia near the end of their lives, and I was fascinated by the way this was transforming our relationships and our communication in our family.

So both between the siblings and the cousins, all of us who were trying to support, but also between my grandparents and in their relationships with each member of their family. There were some sticky and hard parts of that. We realized that Grandpa really needed someone there around the clock when he started turning off Grandma’s oxygen machine because it was scaring the cat.

He was a pharmacist, he was in the medical space, he would know not to do that. But with dementia, you just don’t think the way you have before. It was really challenging, but fascinating to watch my family grapple with these end-of-life transitions and to think about how does this shift the way we interact and communicate as a family, how does this shift the way we relate with our grandparents, and what is this doing within our relationships?

Mike: You know, I dealt with my father having some dementia at the end of life, and I was wondering what you thought. I mean, sometimes it was very frustrating, it was very sad in a lot of ways, but sometimes it probably required a little bit of sense of humor because some of the things he said, or some of the recollections he had. Is it okay to, I don’t want to say laugh at it, but is it okay sometimes to have a sense of humor in this?

Amanda: Oh, yeah. I think a sense of humor is a coping mechanism in a lot of ways. But we also know that laughing together is something that bonds our relationships. If you can roll with the punches and find humor and joy in the things that you experience as a caregiver and with the person you’re providing care to, I think that goes a long way.

That’s one of the things we also found in this most recent study, that the family members and the person with dementia would joke around a lot. They would tease each other or poke at each other, tell jokes. Those patterns that are established in our relationships—if your father was someone who would be teasing, my grandpa was a jokester—he could still get a joke.

You could still razz him, sometimes in ways that were a little different. Maybe it was actually just like he loved to put on funny hats and wigs and be goofy. Being goofy still really worked with him. I think holding on to those pieces of our relationship, even if they’ve shifted, like, oh man, you’ve gotten yourself into a crazy position here, Dad, this is a really silly situation you wouldn’t normally be in.

If we can laugh about it, or sometimes individuals with dementia will say really funny things, I think it’s okay to laugh with them. Obviously, we never want to be mocking or tearing down anyone, but I think there’s a lot of humor to be had as we bump around through our lives, even in the difficult parts.

So, I think especially if laughing together and humor was a part of your relationship before, keeping that as long as you possibly can in that relationship is going to be a help and a boon.

Jacie: I think it’s so wonderful that for your experience you had this group of family that were able to coalesce. I feel like so many families just don’t have that kind of support, so it’s really wonderful to hear that your family had that at that difficult time.

You know, your education was in the western part of the U.S. How did you wind up coming to teach and research at UConn?

Amanda: Oh, it’s such a good question and it has been a change. I’m from the West, I’ve always lived in the West, and the East Coast is a big shift. This was one of the few jobs in interpersonal communication that was available when I was coming up to go on the job market.

I like to say this was the best job and I got it, but honestly, I do think UConn is a fantastic place to be. I have really, really enjoyed my time here. As a researcher, there are excellent resources. As a colleague, I have wonderful support in my department. And as a teacher, we have excellent students.

I’ll say I don’t think I’d ever thought of the state of Connecticut until I interviewed for this job. I’m from another forgotten state, Idaho, way over in the West. So, people here are like, we don’t know what you’re talking about with this Idaho thing. And that’s kind of how my family responded, like, Connecticut really? What is in Connecticut?

What I learned quickly is that basketball is in Connecticut.

Jacie: Basketball capital of the world, that’s right. You know. What do you like the most about being part of the UConn community?

Amanda: I really, really enjoy—I would say we just have a great little community out here in Storrs. I know that we have campuses in other places, but I feel like Storrs is this wonderful little pocket that is so surprising.

It’s been really wonderful to be a part of a community that’s really celebrating everyone wherever they’re at. I’ve found that as the newest and youngest professor in my department, there’s so much support for me and everyone celebrates everything that I’ve accomplished.

With my grad students, everyone is so excited to see them succeed and we celebrate their accomplishments. And I feel that with my undergraduate students as well. When students say I got an internship or I got this position, there’s so much support and celebration for the people who are here at whatever level they are.

I’ve really felt that, even just in my short time here—this is my third year. There really is a wonderful community of support and celebration here.

Mike: So, you do a lot of research in different areas that affect people’s lives. Tell us a little bit about the research you did into isolation and alcohol use.

Amanda: Yeah, so I’ll say my professor, who was my advisor in grad school, was really digging into this space when I came into grad school. So, I kind of lucked into this research area. It wasn’t one that I had picked, but one that we got to dig into together.

He’s a social scientist, I’m a social scientist, and we’re interested in social processes that impact health. One of those that we pay attention to is social isolation and social support and how that impacts our health behaviors, especially in this case, drinking behaviors.

We recently conducted a study where we surveyed about 600 folks in the UK and about 600 folks in the U.S., wanting to learn about how some of their personality traits impact their social engagement and how that might impact their health behaviors, their drinking behaviors.

We looked at both resilience as a trait—you can look at that in multiple ways—but we looked at resilience as a trait and also at negative emotionality, which is kind of like just being grouchy. Negative emotionality as a personality trait is someone who’s more likely to be aggressive, more likely to get upset, they’re just kind of grouchy people.

So, we have resilience on one hand, grouchy on the other. What we found was that the folks who are resilient tend to have less social isolation, and those who have this grouchy personality trait tend to have more social isolation. That kind of makes sense.

And that social isolation influences their drinking behaviors. The people who are more socially connected, have less social isolation, they’re less likely to drink as a coping mechanism, and they’re also less likely to drink alone. Social drinking wasn’t impacted by social isolation, but this drinking alone and coping drinking was.

I think the important message here is that when we are supported and when we have people around us who support us, we’re not isolated. We don’t have to turn to things like alcohol to cope or to self-medicate. And we’re more likely, if we are going to be drinking, to be doing that with others in a social setting rather than drinking alone, which tends to be associated with some negative outcomes.

So, the big takeaway from that study is that developing a manner of engagement that connects you to others is important, and that our social relationships create a support that helps us engage in healthier behaviors generally.

Jacie: Amanda, things like dementia, end-of-life care, alcohol use, isolation—these are heavy topics that you’re looking into. So, when you’re not teaching, when you’re not researching, what are you doing to take care of yourself as you do this difficult work?

Amanda: Such a good question. I like to move my body, so I like to get out and do things that require me to move. One of the reasons is you can just let go of any stressors as you’re moving. I love distance running. I’m not a really fast distance runner, but I like to run for a long time.

I’m training for the Hartford Marathon right now, and just getting out and running is a way to clear my head, particularly when I’m in the middle of something heavy like this. If I’ve been talking to a whole bunch of caregivers telling me their stories, I love being in that space, but I have to be able to set it aside when I move back into my regular life.

So, I love running, that’s one of my favorites. My husband and I have been rock climbing quite a bit recently, which is really fun and tricky. We’re big hikers, although I’ll say less so in Connecticut. We hiked a ton in the West, and we haven’t hiked as much in Connecticut. So, you know, send me your hiking suggestions.

Jacie: You got to get out there. There’s great hiking trails in Connecticut.

Amanda: There are so many trails here. I feel like I’m kind of embarrassed admitting it on the air that we haven’t been hiking as much.

Mike: Well, if anybody out there listening has a good hike in Connecticut, you can email Amanda.

Amanda: Please do, please do.

Mike: Well, Amanda, thank you so much for joining us today here on the podcast, and thank you for being such a vibrant member of the UConn community. We’re really happy you’re here.

Amanda: Thank you, it was wonderful. I’m so happy I got to chat with you.

Mike: Jacie, thanks for joining us again.

Jacie: Thanks, Mike. This was a great conversation and so important.

Mike: And we’ll catch everybody the next time on the UConn 360 Podcast.