Amanda Stubbert: Welcome to the SPU Voices Podcast, where we tell personal stories with universal impact. I’m your host, Amanda Stubbert. Today, we welcome Doctors of Nursing Bomin Shim and Julie Pusztai. Prior to SPU, Dr. Shim worked with those caring for loved ones with dementia. And Dr. Pusztai did her doctoral work on the process of aging. Now working together on a qualitative study, they’re exploring the spiritual life of those suffering from dementia. Bomin and Julie, thank you so much for joining us today.
Bomin Shim: Hi, Amanda.
Julie Pusztai: Thank you, Amanda.
Amanda: Bomin, let’s start with you. Can you give us a little synopsis of the great work you were doing with caregivers?
Bomin: Sure. So this was actually my doctoral work, as well. And I started out with not only dementia, but with Parkinson’s disease caregivers. And my focus at the time was with spouses. I think doing the secondary analysis work, I was just seeing a big gap in the literature around most science focusing on the negative aspects and the burden of caregiving. And I think what I felt there is, “That can’t be the end of the story.” And so my research focused on … because I found a subgroup when I was doing my secondary analysis. There were themes of different groups that emerged. And one of the groups expressed just a deeper meaning, a sense of why they were doing this in a deeper relationship.
That is kind of counterintuitive because we tend to think of the relationship diminishing as the dementia progresses, which is in some aspects true, but the way that they described the love that they felt for their spouse, deepening in ways, to quote one of my caregivers, “In ways that if you were on your own track, that they wouldn’t have met in the space that they were at the current moment.” So I interviewed caregivers who … and that was the wording of the flyer: “Have you found meaning in caring for your spouse with dementia?” And these caregivers started responding to me. And I interviewed them mostly in their homes. And they would share these stories of how they found a deepening, a broadening, in their marriage and their relationship through caring for their spouse in ways that they did not imagine before.
“They would share these stories of how they found a deepening, a broadening, in their marriage and their relationship through caring for their spouse in ways that they did not imagine before.”
Amanda: I know from my own family, my mother took care of my grandmother for many, many years with dementia, and it can feel like such a burden on the whole family because you not only lose the person suffering with dementia, but you sort of lose that caregiver, as well, because it’s so rare that they can get away and they can be a part of family things. So I just love this concept of looking at, but there are reasons why people make that choice. There are good reasons why people make that choice. So I really applaud that, that work that you’re doing. I have many more questions, many more questions for you. But Julie, let’s have you jump in and talk about your doctoral work with the process of aging.
Julie: Thank you, Amanda. I had the privilege of doing a similar study as Bomin and I are doing, but with the oldest old. So my participants were between 87 and 100 years old.
Julie: And I was looking to understand this experience of living with losses and likewise gains or rewards in advanced old age when longevity is very diminished and death is moving closer. The questions were: What counts to them? To the participants, what counts as loss and what counts as gains for the oldest old? And what is the meaning found in the losses and gains for the oldest old? And how do we understand maintaining this meaningful life world while managing life in these very oldest old years? And I had just rich conversations about questions using the same methodology of phenomenology. And Amanda, I was so blessed to sit with these people that have lived long and hear from them what life is like right now. What is this experience?
And like Bomin, kind of common themes that came through was all they have learned over a lifetime has brought them to this point. And these people were World War II, Depression-era people that have had some very difficult lives already. And I would say one thing to take away from that … well, there’s a lot. But one thing to take away from that is they had learned to focus on the positive and they kept their sight in the present on the good things in life, in their lives. And it was a good reminder to me, focus on those positives because at this point in their lives speaking too much to all the losses, while they did it with me, they didn’t stay there. They moved on to acknowledge the positives rather quickly.
“I was so blessed to sit with these people that have lived long.”
And one more thing. I was talking to my husband about this, just a little bit ago, and remembering this idea that our “I can” and “I cannot” really changes fast. They’re living with a lot of changes about what they can do, and then also what they cannot do. And their body is speaking to them very loudly in the midst of that, yet they are finding rich, rich meaning, mostly with family and lives and in their spiritual being, as well.
Amanda: Which I can imagine that these are the types of lessons that we hope that we don’t have to wait ’til we’re 80-something to learn these lessons.
Amanda: I mean, we talk about this concept of middle age where you sort of come to this halfway point of realizing I have possibly less in front of me than behind me. And I know growing up, the concept of middle age was always like, you’re more like three-quarters of the way done. And then you get to your forties and you think, “Wow, am I really here? Am I really at sort of a tipping point?” And I only say that to get at that very point, that it’s time to learn those lessons now. Like, why wait until you have so many “can’ts” to focus on the “can”?
Julie: Well, and just to affirm that, Amanda, I think it’s now. And I’m further down the road than you, but I think it’s now to practice those habits of how we see life rather than wait until then. And I will also add that none of them said, “Yep. I feel like I should be 100 years old. Yep. I feel like I should be 93.” You know? Everybody still feels, “How did I get here?”
Amanda: Right? Don’t we all feel that way? Like, you look in the mirror and say, “But on the inside, I still feel about 22.”
Amanda: So both of you came to SPU having done all this great work and then found this common bond. Could you talk about your current project that you two are working on?
Bomin: I think Julie and I have been intrigued with each other’s work for quite some time before that. We both are in geriatrics, and we both love working with older adults. And I stumbled across an article around spiritual reminiscence. So it was with older adults living in the nursing home who had dementia and a researcher went in and asked them these questions about spirituality and meaning of life. And at the end of the project, they were all just marveling at, “Nobody asked us these deep questions anymore. Nobody asked us about this meaning of life.” And it was just so refreshing for them. So I just got so excited and approached Julie. “Julie, Julie, look at this article. We’ve got to do something similar.” And so we got talking and brainstorming and that just started off a remarkable journey.
“Julie and I have been intrigued with each other’s work for quite some time before that. We both are in geriatrics, and we both love working with older adults.”
Julie: Bomin, I will just add to that because I actually got this article out. And my memory is you walked into my office and handed that article to me and said, “Do you want to do this with me?” And I just looked at the title and my heart just literally, probably skipped a beat or something because I could just read the title and know that yes, indeed, I really did want to do this.
Amanda: I noticed that when you talk about your work, there’s the term dementia and then there’s Alzheimer’s. But those aren’t just the same thing, right? Bomin, can you help us understand the difference between dementia and Alzheimer’s?
Bomin: Sure. Alzheimer’s disease is one type of dementia. So the reason that we hear Alzheimer’s disease a lot is because it’s very common in the U.S. In some other countries, other types of dementia are more common. But dementia is more of an umbrella term that covers that cognitive and eventually some physical decline, as well, depending on the type of dementia. So it’s an umbrella term. And there’s many, many, couple hundred of different types of dementia that can be temporary or more long term.
Amanda: OK. And for your studies, you’re dealing with various types of dementia. Correct? Not just Alzheimer’s?
Bomin: Yes, that’s correct.
Amanda: OK. And Julie, what would you say is one of the biggest, and we’ll go back, I’m going to ask Bomin the same question, but what’s one of the biggest surprises for you in doing these interviews with those living with dementia?
Julie: And perhaps it shouldn’t have been a surprise when I remember the meaningfulness of my interviews within my former study, but the depth of appreciation and meaning in the participants, it’s not just a surprise. It’s always overwhelming. And it seems to come up when we’re finishing our third interview with somebody. And so we’re sort of ending our interview, their part in the study, and we will not be seeing them again. And for all three of us, Bomin and myself and the participant, it’s hard to say goodbye. And almost every participant, I don’t think I’m exaggerating, is so very appreciative of being able to tell their story and truly be listened to. We know through other research that people experiencing dementia often feel less than and not heard. And people will talk around them and dismiss them, not out of cruelty, but just out of not knowing how to respond to the knowledge that someone has dementia. But our sitting with them through each of these interviews has been just so meaningful that we all get a little misty-eyed. Don’t we, Bomin?
“We know through other research that people experiencing dementia often feel less than and not heard.”
Julie: As we’re saying our goodbyes because it’s been so meaningful.
Amanda: You know? I feel like we can all understand on level what that must feel like. I mean, certainly not to the extent or all those things, but just thinking back to different periods of life when I was a stay-at-home mom, and you would go to dinner with couples and everyone was talking about work, and you just felt like you had nothing to contribute. And I think we can imagine some of those moments in our lives. And then it’s like times, what, a thousand, because it’s your whole existence. And I can just imagine how demoralizing that would be. And yet, what a huge ray of sunshine to have someone come and come back, and come back and ask you those questions and listen intently. Bomin, what’s been one of the biggest surprises for you?
Bomin: I would kind of echo what Julie’s already shared. But I guess adding on to that is when we think of dementia, and especially with Alzheimer’s, there’s this component of memory loss. And so, sometimes our participants don’t remember something that happened this morning or yesterday, a couple weeks ago, but with depth that they’re able to share what is meaningful to them that describes their own concept of spirituality is just … it’s just really remarkable to be a part of that and sharing what’s meaningful to them.
And I think that sense of connection that we value so much in our relationships when … I guess it’s a sadness. But when you have dementia and we hear these stories of people no longer talking to them or addressing their family member, instead of looking at them, the loss that they must feel because the connection and longing for connection is still there, that we have innately within us to share ourselves, be known by others. And that just came out so strongly, I think, in the interviews that they were being heard. And yeah, I think that’s just so moving and amazing doing these interviews.
Amanda: I also feel like there might be sort of a vicious cycle that comes. Like, we’ve all heard, “Use it or lose it.” Right? Like, if you have a skill, if you’re using your brain in certain ways, as we age, like, to continue to use those skills are how you keep them into older, older years. So I almost wonder if it can make dementia worse by people not connecting on a daily basis with these patients. Do you think that’s true?
Bomin: Yes. Well, this is more anecdotal, but in the nursing homes where the isolation … and I think Julie and I also experienced this in our current study though with the pandemic and participants get isolated, and we would have to meet them over Zoom. Definitely seems to affect how confused they are and how they’re able to connect. And it’s just not the same when we’re connecting in person in the same space, when we’re sharing that time and space together versus trying to talk on Zoom. So that definitely does seem to affect their cognition as a part of the dementia, as well. Definitely.
Amanda: Mm-hmm (affirmative). Mm-hmm (affirmative). Well, Julie, let’s go back to you. Can you start us down the road of what you hope to learn from the data that you’re collecting now?
Julie: It is a qualitative, and more specifically, phenomenological study, meaning kind of very briefly that we want to learn: What is this? What is this experience of living with dementia and finding meaning and purpose with it? Like we’ve said. And in this kind of perspective, this worldview, we are looking both at what makes it very unique for that individual and also very human in a broader context. Like, what do people have in common? And we want to do both.
We spent time with people in the first interview going way back to early childhood and hearing about their life history. So we can put this experience of living with dementia, kind of in a larger context of their life with the thinking that everybody comes to this place in life uniquely. And then also depending on the type of dementia and everybody experiences the impact in some unique ways, what is it like for this person? And so we hope to see both those things that we share in common with one another in this experience and those things that are very distinct about various individuals experience of living with this.
“What is this experience of living with dementia and finding meaning and purpose with it?”
Amanda: I’m wondering, and maybe this is something everyone knows but me, but just with health care and all sorts of things that we can recover from now that we couldn’t in the past, this population must just be growing. Right? There must just be more and more people with each year that are suffering with dementia. Is that true?
Julie: Well, yes. And some of that, Bomin, chip in here if you want to, but some of it is because my generation, we are the biggest chunk of people around.
Julie: And we’re getting older. And so some of it is just where the numbers, how the numbers are falling right now, too, as to how many of us are actually entering this time where dementia can often show up. And I think too, people are recognizing more around the globe, it’s just becoming more in our consciousness around the globe. So there are worldwide efforts, as well.
Amanda: Right. To better understand how to cope, right?
Amanda: Yeah. For sure. So Bomin, I want to go back to you and ask, and I’m sure you have many things you could say, hopefully you can pick the top one or two, what advice you would give to caregivers and loved ones of dementia patients? As we said, it’s such a growing population. You know? You almost can’t find a household that isn’t some way connected to a dementia patient.
Bomin: One piece of advice? So I think what came out in my research, and in some ways it’s no-brainer, thinking of focusing on the blessings, acceptance, humor, all those things. But I guess what stuck with me for a long time, and what I probably continue seeing in people with dementia, is acceptance. And I’m not sure exactly how to express this, but it seems to come from a humble account of accepting what life has given me. And I don’t want to … I don’t mean to say that if you’re struggling with it, that you’re doing something wrong. It’s just that once you’re able to face the situation, they seem to find ways, because of what they have learned their whole life, they seem to remember, “Oh, I’ve been through challenging times, and I’ve gotten through it.”
And by doing that, it’s like they’re able to finally see the other person is not doing this on purpose. So it’s accepting the different pieces of the difficulty. And the caregivers seem to, once they realize that, it becomes a choice. Am I going to be stuck here, or am I going to make a choice to embrace this? And however, in their own ways, they seem to find a way forward. Yeah.
Bomin: It is a difficult process.
Amanda: For sure. Having been on the front lines of that myself, I definitely know. It’s very difficult. And yet, almost like raising children, in a way. I think as your children get older, you look back and say, “I wish I could have let more things go.” Right? Like, I wish I could have done a little less laundry and a little more playtime. And I wonder if that’s also true with caregivers, that as you realize later on how important connection is, that may be the same idea. Like, a little less … you know? Whatever it is. A little less laundry and a little more connection time, realizing how important that is for both the life of the patient and the caregiver.
Bomin: Mm-hmm. Yes. Definitely.
Amanda: Yeah. Well, let’s switch it to the other side. And Julie, what about those who find themselves in the early stages of memory loss? And I’m sure a lot of that angst would be not knowing how far that memory loss is going to go. What advice would you have for those people just starting to deal with this?
Julie: Yes. Good, good question. Two things come to mind, and there are more, but one is this Seattle area, and there are others, but this area has a lot of resources available to those with Alzheimer’s and those providing care for people with Alzheimer’s. And so, one thing I would say is look around you in your community and see what’s out there. If there are support groups that you can enter into with other people that are in a similar situation as you, that can help tremendously. So that’s one thing. The resources around you. The other thing, and this is a little to the question you had for Bomin, as well, but we have seen, just in the people that we’ve talked to so far, some differences in communication between the individual and family members. And there are some desires on the part of the person living with dementia that the family may not recognize.
“Look around you in your community and see what’s out there. If there are support groups that you can enter into with other people that are in a similar situation as you, that can help tremendously.”
And I would say both to the caregivers and to the individual living with dementia that having conversations with one another is a really important part of it; about what is meaningful, what makes this day meaningful to you. Around the topic of spirituality, we have seen, gosh, a simple thing of somebody’s childhood faith becoming very important to them again, but family members not recognizing it so much, and so that need getting kind of unmet. And so, understanding who you are or who your loved one is right now in their life and what can make life more meaningful to them in a very individual way, and not making only these assumptions about the direction that dementia is going to go, but also look at them as a whole person with needs and what today can make this a better day for you as a caregiver and as a person living with dementia.
Amanda: Mm-hmm (affirmative). So if I understand correctly, you are still looking for participants in your study. So we want to put the call out to all of our listeners. If you have questions or you know someone who would like to participate in the study, you can contact them at firstname.lastname@example.org. Again, that’s livingwithdementiastudy, no spaces, @gmail.com. Do either one of you want to give any more detail about exactly who you’re looking for?
Julie: I can do that. We are looking for people that have a diagnosis of some sort of dementia. We would like them to be in the mild to moderate stages so they can still have a good rich conversation with us, English speaking. Now, because of COVID, we have refined our Zoom skills and interviewing, as well. So originally, we wanted it to be local people, but we have done some Zoom interviews, as well. So people don’t even have to be in this area. They really don’t even have to be in this country, and there are some lovely things about thinking about getting people that live somewhere else, as well. Diversity, various ethnicities, are all good. Bomin, anything else?
Bomin: I don’t think so. I think that covers it well.
Amanda: Wonderful. And as you said, it can be helpful to this study, which hopefully will, in turn, be helpful to really all of us as more and more of us suffer from dementia. But like you said, I love that the participants actually are so, so grateful for these conversations, that it’s actually a gift to those participating in the study, which I can imagine, again, if my grandmother was still with us, I would love to be able to hand her that gift of just more people attentive and interested in her world. So thank you so much for joining us today, and thank you so much for the work that you’re doing. I know that it’s really just going to benefit all of us in the end. So I want to end by asking both of you our final question, and we’ll let Bomin go first: If you could have everyone in Seattle do one thing differently tomorrow that would make the world a better place, what would you have us all do?
Bomin: So Julie and I have been in conversation with actually another colleague here at SPU around the concept of time. And I guess this answer has to do with that time. And one of the things with dementia is their concept of time slightly changes, and they might be living in a different time, or it’s just expanded, or is just different. So I guess what it would be is when we meet someone in the store, on the street, who is different from us and their response doesn’t come immediately, if we take a step back and give a little bit more time in that time and space, we might be surprised at how we can actually connect and communicate with each other. And I know that sounds a little abstract and out there, but in our relationship with … you know? If we hear that diagnosis, dementia, sometimes we just don’t know how to talk to the other person where we’re unsure. And so we might halt. But just give yourself and the other person time and you might be very pleasantly surprised.
“One of the things with dementia is their concept of time slightly changes, and they might be living in a different time.”
Amanda: That makes me think of … I know there have been a number of studies that basically show the number-one factor about whether we show altruism, whether we are kind to those around us, is time. Whether we feel late, whether we feel like we have the space to do that. And yeah, I think it’s really great advice to just don’t let your timing always affect the person you’re with. Sometimes give in to their timing.
Bomin: Yes, yes.
Amanda: Yes. I think I can be just as guilty of that as everyone else. Julie, how would you answer our question?
Julie: Well, I don’t want to be too redundant here, but that is really what I was thinking, as well. The kindness also can come from the recognition of how unique we are as people. And it’s within all of us to categorize people. It’s just easier and faster to figure you out if I can put you in categories. But taking the time to extend kindness to an individual as best you can, knowing that all of our lives have a uniqueness. Not everybody comes to it from the place I come to it with. So seeking to know the individual and seeking even for someone fiddling with their wallet to try to find the right card or the right whatever money to give, and you’re waiting impatiently. You know? That individual has a life story. And so kindness and treating people with understanding that they live in a certain life situation that may be different than ours, that it is worth understanding.
Amanda: And again, if you have question or you know someone who might like to participate in this study, please contact them at email@example.com or just contact firstname.lastname@example.org, and we will get them your information. Well, Julie and Bomin, thank you so much for joining us today. And again, thank you for the work that you’re doing. Let me end with our prayer of blessing: May the Lord bless you and all you put your hands to. May the Lord be gracious to you and all who hear your story. May God bring unity to our community and peace to us all. Thank you so much.
Bomin: Thank you, Amanda.
Julie: Thank you, Amanda.