Working Caregivers: The Invisible Employees

Caregiving, WOOP, and the Emotional Load: A Conversation with Dr. Joan Monin

• Selma Archer & Zack Demopoulos • Season 1 • Episode 25

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In this episode, we sit down with the amazing Dr. Joan Monin from Yale University to talk about the real, raw, and often overlooked emotional weight of caregiving—especially for those of us juggling careers, kids, and aging parents. Joan not only brings a wealth of research and experience in public health, but also shares her personal journey as a daughter navigating her mom’s dementia diagnosis. This one hits close to home.

We unpack the psychological barriers that prevent caregivers from getting the support they need, the tension of being a “pre-caregiver,” and how to manage stress before burnout hits. Joan introduces us to a simple but powerful emotional regulation tool called WOOP (Wish, Outcome, Obstacle, Plan)—and trust us, you’re going to want to try it. If you’ve ever felt stuck between showing up for your job and showing up for your family, this episode is for you.

 

Episode Highlights:

 [2:13] - Welcoming Dr. Joan Monin and learning a fun fact about her town's connection to the Statue of Liberty
 [4:43] - Joan opens up about her personal caregiving story and her parents' challenges with dementia
 [7:53] - The emotional disconnect between academic knowledge and real-life caregiving
 [10:50] - Why accessing a therapist as a caregiver is harder than it should be
 [14:06] - How Joan’s caregiving journey shifted her perspective on work-life balance
 [16:39] - What Joan learned by watching her kids interact with their grandparents
 [19:05] - A deep dive into emotional self-regulation and the WOOP method for caregivers
 [27:52] - How WOOP works and how it’s helping caregivers manage guilt, anxiety, and stress
 [31:02] - Introducing Borrow My Glasses and their innovative caregiver education efforts
 [34:40] - The spousal caregiver dilemma and why unpaid caregiving laws need to change
 [35:55] - The double standard society places on women, spouses, and working caregivers
 [41:07] - The surprising divorce statistics among early-stage dementia caregivers
 [43:33] - Joan’s latest research focused on helping people live well with dementia
[46:26] - How to connect with Dr. Monin and learn more about her work

 

Links & Resources:

·         Joan Monin PhD Yale Website:  https://ysph.yale.edu/profile/joan-monin/ 

·         Joan Monin website:  https://scholar.google.com/citations?user=hwgGVxMAAAAJ&hl=en 

·         Joan Monin LinkedIn:  https://www.linkedin.com/in/joan-monin-54153a8b/ 

·         WOOPmylife.org:  https://woopmylife.org/ 

·         "WOOP" study:  https://pubmed.ncbi.nlm.nih.gov/38687142/ 

·         Borrow My Glasses website:  https://borrowmyglasses.com/ 

 

If you enjoyed this episode, be sure to follow the podcast and leave a review. Remember to check out our website at invisibleemployeeadvocates.com for more resources, and subscribe to our newsletter for updates! We’ll catch you in the next episode.

Joan Monin:

There's a lot of barriers to getting resources to the people who need them. You often think, if you create this stuff, they'll just come and they'll use these resources, but it's really not that simple. There's the diagnosis that's hard to accept. There's being a caregiver that's hard to accept. And then for me, I kind of feel like I'm this, like, pre caregiver that's helping my dad, like, the uncertainty of when I should butt in as the child, right? Like they're my parents. I, you know, can't treat them like they're my kids, because they're my parents.

Unknown:

Did you know that in 2020 there were 53 million caregivers in the United States, and by 2025 this number is expected to grow to 62 point 5,000,073% of these caregivers also have a job. They are called Working caregivers, and they are invisible because they don't talk about their caregiving challenges. Working caregivers, the invisible employees is a podcast that will show you how to support working caregivers. Join Selma Archer and Zach demopoulos on the working caregivers the invisible employees podcast as they show you how to support working caregivers.

Zack Demopoulos:

Good morning, good afternoon, good evening. Thank you for joining us on the working caregivers, the invisible employee Podcast. I'm Zach demopoulos And I'm Selma Archer. How are you doing some Archer,

Selma:

I'm doing great. Zach demopoulos,

Zack Demopoulos:

look awesome. You look awesome. We gotta, we gotta talk about something besides the weather now. So give me something good.

Selma:

Something good. Oh, this past weekend, I rode about 26 miles on my bike.

Zack Demopoulos:

You are an athlete. My goodness, I love it. That's incredible. That's That's awesome.

Selma:

That's all and I did it before it got hot, not talking about the weather, but that was a variable,

Zack Demopoulos:

and it's probably therapeutic too, right?

Selma:

Oh, yeah, definitely. Yeah, yeah. I love that.

Zack Demopoulos:

That's great. Well, we're going to talk, we're going to talk a little bit about their therapeutic things that we need to do to take care of ourselves in just a little bit, but let's get our guest so we like to bring to the show a great special guest. Dr Joan Monning, hey. Dr man,

Joan Monin:

hey. Zach demolis,

Selma:

welcome. Dr man, and welcome.

Joan Monin:

Thank you. It's great to be

Zack Demopoulos:

here. Oh my goodness, so great to be here. And so how's it going? Dr Manning is calling in from Yale University, where she works. That's we. Asked her about the flag in the background. What's what's going on with the flag there? Dr man,

Joan Monin:

yeah, it's the Ecuador consulate downstairs. So that's the Ecuador flag.

Zack Demopoulos:

Pretty cool. That's pretty cool, awesome. So we've already established that you live near or Yeah, we assume. So we always like to start off asking our guests something kind of fun about where you live. You got something fun you want to share with us?

Joan Monin:

Yeah? Well, I live just outside New Haven in Brantford, Connecticut. And did you know that the stone that the Statue of Liberty is on is from the quarries of Brantford. It's like a pink stone. It's a granite, and it's famous for for that building material, and it's actually at the base of the Statue of Liberty.

Zack Demopoulos:

Wow, that's actually pretty cool. Most guests give us, you know, this, this, that. But that was really amazing.

Joan Monin:

Yes, yeah, I'm lucky to have kids. You know, where the education is good, in Brantford, about the local history. So, you know, I learned about things like the Charter Oak and Connecticut and the special chair they have at the Capitol building. And I, you know, learn all about our history in our state, in our town, that

Zack Demopoulos:

that's actually pretty cool. That's pretty cool. I, I was going to say that, you know, it came on a boat, right from, from Europe. But no, not the base, the base game from, from, from your area. Okay, I got you. There's a little bit of history there for you listeners. Let's jump right into our conversation again. Thank you for being here with us. Dr mano, we really appreciate it. You've done some tremendous research in public health and in the caregiving space, and that's how we found you. And we really are excited you're here. We're going to talk about some some important things. But first of all, do you mind sharing a little bit with us about your caregiver story?

Joan Monin:

Sure, yeah. So, you know, I've been doing caregiving research for a long time, since around 2007 I think I started doing research about caregiving, but I think about two years ago is when. I stumbled upon my own caregiving journey for myself personally. And boy, is it weird to have been an academic researcher about caregiving, and then find yourself you know, an adult child of a person who is in the beginning, maybe middle, stages of dementia right now. So my dad is my mom's caregiver, and doing a great job. It's but it's interesting being the the child who is like the biggest expert in dementia caregiving, right? Like academically and then trying to help your dad and your mom through that journey. It's a it's a very interesting perspective. I feel very blessed to know a lot of things that are resources that are around me, but now I'm understanding that, because my parents live about an hour and 20 minutes away drive, that really there's a desert of caregiving resources around them, and so all the stuff I know that's around southern Connecticut is not really an option for them, because there's a lot of barriers to getting resources to the people who need them, and I'm finding some of the biggest barriers are psychological ones, like my mom doesn't really believe she has dementia and doesn't want any support, and my dad also doesn't believe that he needs any support as a spouse of a wife, you know, like he he's not really wanting to expect accept anything for himself. So I've had to kind of discuss this as like, this is for our family, this is for the three of us, and that's been an interesting journey, because you often think like if you create this stuff, they'll just come and they'll use these resources. But it's really not that simple. There's the diagnosis that's hard to accept, there's being a caregiver that's hard to accept. And then for me, I kind of feel like I'm this, like, pre caregiver that's helping my dad, and it's like the uncertainty of when I should but in as the child, right? Like they're my parents, I, you know, can't treat them like they're my kids, because they're my parents, right? So it's an odd stage right now for me, I can actually

Zack Demopoulos:

relate a little bit, as far as you know. I used to run a home care agency, and I thought, man, I've got all this knowledge, but I had a challenge trying to go home and care for my mom with all this knowledge, in the beginning, I was spewing it all out, and she would get just upset, like, that's not me. That's for sick people, right, right? So how did you How do you deal with that? Because without that academic knowledge, now you're at a applicable life, right? I mean, how do is your self awareness radar up high? Or how do you, how do you handle that where you have to pull back the reins a little bit? Or because your parents are lucky, of course, fortunate to have a resource like you as as well as a daughter.

Joan Monin:

But yeah, I'm trying to practice what I preach, what I've been telling caregivers this whole time, and including me too, you know, like, start early, like, just because I kind of don't feel like I'm burned out yet, like I am part of the caregiving network at this point. And as I describe it to people, I realized to myself, like, yeah, that's a lot to be holding every day. And so, you know, I am getting connected to a therapist to help me think about things. You know, because I have a supportive husband, I have supportive friends, and I can talk to them, but sometimes you just kind of need someone that you know, will it's their job to listen, and then they can help you kind of think about, Oh, should I be doing this at this time? Or, you know, how should I be thinking about this, whatever crisis at the moment? You know, it might not be like a full blown crisis, like some of the ones we talk about, but ones where you kind of feel like, oh, wow, my dad's not listening to me. I'm not sure what my next move is here to be like the responsible person, or how do I honor my mom's dignity? But there's the. Different constraints around her cognition, like, how should I actually be implementing the things that I preach, which is to maximize the dignity of every person who's going through cognitive change, not thinking about them differently. But it's a real sometimes it can be really hard to, like, put that in practice as like, the daughter of a mother, and you are seeing changes in how you relate to one another. Yeah, yeah. How do I kind of, like, re contextualize that to myself? I still love my mom, and, you know, like to talk about certain things, but also there's like another thing happening right now,

Zack Demopoulos:

right, right? Just, just, just one quick follow up question. And by the way, I love that you shared about the therapist. I think that is a fantastic option for many of us who we feel alone, and sometimes you just can't talk to people who don't get it or or what have you. Did you have a particular specialist, a caregiver, therapist, or just, just the therapist who's really helping?

Joan Monin:

Well, I actually learned a lot about what you all are doing through the process of accessing a therapist through my employer. So, you know, I finally kind of learned about some of the benefits that I have. Because if you're not really seeking out a therapist, you don't really, like look into what the benefits your employer has. So then I, like, tried to figure it out. And it wasn't extremely easy to do that. And I learned about what the difference was between, like, that temporary benefit that you can get, and then also, like, the long term one that I qualified for. But I had to figure that out. And then I had to, like, understand that I needed to be like, authorized by that plan to go to an authorized specialist, and that caregiving was not on the list of things like it could have been like marital therapy, like depression, all these different things, and you had to be kind of diagnosed with that to keep on going. But then talking to, you know, those insurance people, they're like, well, actually, there is kind of a code that people use for caregiving, but it wasn't like primary on the list. And I just wonder how many people see that as kind of a block along the way to actually accessing that therapy? So kind of something related to what you guys are working on is make it more prominent that you know, caregiving situations are a thing to get there before, because I'm sure there's way more than me that's doing

Zack Demopoulos:

this. It could be something as simply as changing the language, yeah, benefit,

Joan Monin:

yeah. Because I almost felt like, oh, I have to have a psychological like disorder for me to take advantage of this benefit. But I'm literally trying to do what I preach, which is get in touch with a therapist before you have a psychological disorder.

Selma:

So Dr, dr monnen, is it's clear that your expertise and your experience in this area of caregiving and research has certainly influenced the way that you interact in your your journey with your your parents and your mom, particularly, I was just wondering on the flip side of that, has your personal experience with your family influenced the work that you do like, what do you Bring back from your experiences with your with your caregiving journey to the job?

Joan Monin:

Yeah, absolutely. I mean, I think it's more that I see the the blocks to actually engaging with caregiving resources. I think I mentioned that before, but just as like a working professional person, I just want to get through my day and do all the stuff I have to do. And right now, I'm not quite faced with my mom's needs right in my face every day. So sometimes I'm just like, not thinking about that part of my life, but it's still happening over there, right? And we say to everybody, like, just be prepared. But yeah, you know, as a busy woman with teenagers and I like to do stuff. Fun, and I don't want to be thinking about what's going to happen with my parents. Sometimes I do push it aside. And I think that's, I think that's typical, like, I don't think people are thinking about caregiving all the time, even though that's like, what my research is. And I think, like, oh yeah. People are thinking about caregiving all the time. That's That's just one part of their life, and it like shows up every once in a while, and it can be scary sometimes, and then you kind of just like, back off from it for a while, until it comes and goes in your face again, or you visit your parents and you see that there's been a change, and it's not apparent to you because you're not living with them. And so that's like maybe a first phase before we decide on any living arrangement, type of situations that may have to come down the road. So at what point are you like taking it seriously? Those conversations with someone like Zac Demopolis Home Care Specialist say like, oh, today is the day where I don't think my mom can do all the things, but I don't think it works like that in real life.

Selma:

It's a good point. So do you think that your your caregiving journey, or has your caregiving journey changed or influenced at all your relationship with your with your kids?

Joan Monin:

It's been super interesting to watch their reactions to things and how they behave. And I have to say, I kind of really admire my children for how they do act with their grandparents in ways that sometimes I'm not able to do because I'm too emotionally in it, and I think they're more just like, that's Yaya and Gramps, you know, and they're able to, kind of like, roll with the situation. And they've been around, like, older adults their whole life, like very close to their great grandparents when they were little and things like that. So they have a lot of exposure to older adults and like, aren't scared, but there's a lot of people who don't have a lot of exposure to just older adults in general, or have stereotypes, you know? And I think one thing that's been nice about my family is I, I come from a Greek family where the the older adults are really like the revered people in the family, which is, you know, there's lots of cultures like that, but I do think it's like protective for kids and how they behave towards older adults when that's just part of like, how your family functions, right?

Zack Demopoulos:

Okay, wow. Now you're proud of your proud, proud of your children, for sure. So sandwich generation caregivers, caregivers of family members with dementia or other cognitive impairment issues, those caregivers tend to suffer a little bit more when it comes to physical, mental, emotional, even financial. You've done some work with self regulation, intervention with caregivers of family members with dementia, and I believe that's a fancy word for self care, maybe. But self care, nobody. Nobody likes the word self care and you tell somebody you need to take care of yourself, it's probably the worst thing you could tell somebody. So we put up these walls and we have these defensive mechanisms that we've got this, we're we got this, and you've done some work with this. So please our listeners right now. I hope you're on the edge of your seats, because this, this applies to all of us.

Joan Monin:

Yeah, I mean, it's a conversation that just comes up. So self regulation is maybe a little bit different than self care, but it's the idea of kind of being able to dampen your emotions, or, you know, just control your feelings, really. And it takes exercise to be able to do that, you know, just like physical exercise where we're, you know, building our strength up so that we can cycle for 25 miles, right? Like that takes like time to be able to do that. Yeah, we tend not to do like, a lot of exercise to be able to, like, control our emotions or our responses to things, you know, like if we get upset, like a. An example would be like, your your partner who has dementia, is asking you that same question over and over again, and all of a sudden you're just like, Oh my God. Like, why are you saying that? You know, but we don't have to be like that. And actually you feel kind of bad after you did something like that, because you were like, short with your person. And it wasn't really their fault, but it was like, if you get to the root cause of it, it's, it's probably because you're like, scared. You're like, That person doesn't know what's going on, and I'm losing that person or or that's not my mom anymore, like they're losing their identity to me, but really, like, you can build up skills to stop yourself in those moments if you continually see them happening, right? So you know we thought about what tools are out there that people use for psychological other psychological conditions, or for attaining goals or getting things done, and how could we apply it to caregivers of people living with dementia to react in those type of situations to like, calm themselves and then also behave in a way that's helpful to the other person. And one of these famous psychologists in social psychology, Gabrielle, on again, from New York University, has this awesome website. It's called whoop my life.org, and anyone can check it out. You can use it for anything, and it's available in all these different languages. And this strategy has been used for all kinds of like health conditions, for kids with ADHD to do their homework, for people to lose weight, for people to eat more vegetables. And I thought like, what if we tried this out with spouses or care partners of people living with dementia to practice this exercise for like two weeks to see if it would help with situations like I just said, like the person is asking me the same question over and over. I lose my patience. I yell at them. I feel bad. And so the beauty of this whoop strategy, the wish outcome obstacle plan is that you can apply it to anything you want. But there's special parts to this process that make it very effective, and so it's been studied for over 20 years with like large effect sizes and research to show that it actually works and can change behaviors, but the first part of it is to come up with a wish, or like a goal. So it'd be like, I wish that I wouldn't respond harshly to my partner when they asked me the same question over and over again. And then you envision the outcome. You imagine the outcome. And this is kind of like a little bit of like a mindful thing, so you're kind of closing your eyes and saying, like, if you know, if I did respond in this good way, like we would just keep on going with how we were interacting, making dinner, or whatever, in that moment, and it would feel good. Here's where, like, the really important part comes imagining what the obstacle is. Now, the thing about the obstacle is that has to be something you control. So it has to be internal. It can't be like the obstacle is my partner's dementia, because you can't do anything about that. So you have to try to dig deep inside yourself and say, like, what is the obstacle? And what I've heard from a lot of people, I did some studies on this, is that often they identify that they do fear, feel anxious in that moment, or fearful about the future. And so once you kind of acknowledge like that obstacle, you kind of can name it, right. And then the next part this is also really important, is that if that obstacle happens, I will. And this is called implementation intentions. It's a social psychology thing that where you say, if I feel anxious and you're noticing that anxiety, I will. And then you. And put in whatever coping strategy you want, you know, because people have different things that work best for them. But they might say, like, I will go into the other room and take a deep breath, and I will come back and I will or a lot of people will plan what they're going to say so they don't have to, like, really think of it in the moment, they'll say, like, here's the answer that I want to say calmly, and then just say it, and then over and over again. If you continue to do that, it means you kind of, like, start a new pattern, because you're disrupting that pattern from happening. So that's kind of one interpersonal strategy that a lot of people used woo for. And I did a randomized control trial to teach people to do this versus a control group. And I found that, you know, doing this, learning this strategy, practicing it for two weeks, and then we follow up three months later, were you still doing it and everything that it actually decreased caregiver stress and depressive symptoms and increased their positive emotions, and it also did that for their partner, because we asked the person living with dementia too, the effects weren't as strong on the partner, but you could see the spillover effects to the other person, right? Because the more you're regulating your emotions, the better the other person's going to feel. Because you're not yelling at them, they remember the feelings, even if they didn't remember that encounter. I find that a lot with you know people who are living with dementia, that I know is that, you know, the feelings last a lot longer than whatever the conflict was that you had. So it's been really cool to see that strategy helping people like I've had some feedback from people that said, you know, I was just in my kitchen. It felt like the whole world was crashing in on me. I hadn't used whoop for a long time, but then it just came into my mind, oh, wow, did it. And I was able to, like, stop crying and like, you know, sitting on the floor in my kitchen and get out of it. And I was like, if that just held one person like I it's worth it to me. You know, it didn't even have to be effective with a statistically significant peace sign for me, because, you know, the if you could just help one person like that, that that means the world to me.

Zack Demopoulos:

So I appreciate that explanation. I was under the impression it was around self care, but it is. It does feed into self care, but it's but it's the tools. It's really, what do you call these tools?

Joan Monin:

Just it's called whoop W, O, O, P, wish. Tell us again what that stands for, wish, outcome, obstacle plan, and you can go on whoop my life.org, and you can try it out yourself. They even have an app for your phone where, if you wanted to just do a whoop, it's for free. I have it on my phone, and it just guides you, like, What's your wish? What's your Yeah, what's your obstacle, what's your plan? So it makes it really easy. But the self care at aspect Zach is that, like, you could use this if you're feeling like you don't have time to, like, go for a walk as a caregiver. And so people will use it for, like, health behaviors like that. So it'll be like, Okay, I want to go for a walk in the morning just around my neighborhood, and then, like, the outcome is that I will be healthier, or I will have time to think. And then maybe the obstacle is, like, I don't feel comfortable like leaving my person alone, or I feel guilty because we used to always walk together. And now I'm doing it by myself, and then they would make that if then plan like, if I'm feeling guilty, you know, like, remind myself that this is about dementia, you know, and that it's not about, like, leaving the person out, or if I feel like I don't want to leave them alone, maybe set it up so that someone can, like the neighbor, or something like that, can just come over for that time, ahead of time. That's excellent. Thank you.

Selma:

Thank you for sharing. Yeah, and that's really, like, actually, you're, you're talking about caring for yourself. You're talking about, you know, reducing the stress and and getting the health, you know, that you need by doing this exercise. So it's great. I I'll have to try this out myself.

Joan Monin:

Yeah, I definitely tested it out before I did any research on it, and it got me on the elliptical once a week when I really, yeah. I have little kids. I was just like, I just don't have enough time, because I had to take care of them, and then I have to do my work, and I really haven't been doing any aerobic exercise. And I was like, Yeah, I'm running around the place all the time. It's not like, I'm sedentary, but I like, don't have that time to get my heart pumping. Yeah? So I under, I actually whooped it and made it so that every Sunday after a breakfast, you know, at so I said, After breakfast, then I will go on the elliptical for 45 minutes, and so then that's become like a pattern for the rest of my life. That's awesome.

Zack Demopoulos:

There it is. There it is. Yeah, I love that. That is great. Thank you for sharing. Gosh, I hope, I hope, I hope somebody on the elliptical right now is listening to us and thinking about how to use this method in other ways in their lives.

Selma:

Absolutely this. Can we talk about the borrow my glasses.

Joan Monin:

Yes, I'd love to borrow my glasses. Is an education company in Connecticut, owned by Donna fettus and Lauren Lewis. They have this incredible like team of people who go and do education on lots of different things, including dementia, caregiving, being an older adult living alone. They do trainings for companies so that people who are like all are on the phone lines know how to respond to older adults more. Because, you know, sometimes it's you have to use some special skills to be able to talk with people of different cognitive function or hearing impairment. You know, things that happen as you age. And so this company actually came to me after they read my first randomized control trial paper showing whoop was helpful, and said, Hey, do you want to collaborate to try to get this out, you know, to the masses, and have it be paired with dementia caregiving education so you would have dementia education in a group setting, and then you would teach whoop and they would be able to share their whoops with each other and encourage each other's whoops, right? So we did that work. It went very well, and so now we're looking for opportunities to kind of take it to the next step, to say, like, hey, it was feasible. You can put it out in this way, virtually on the internet, like on an education website. But I just encourage anyone to just look at borrow my glasses.com because they have a lot of options to help caregivers, just in general. But that's the one that I kind of helped with in terms of my research influencing some of their practices. But yeah, we're really looking forward to continuing that work to try to get to more people, potentially through businesses and and organizations that would want to offer that, you know, to employees

Selma:

as part of their benefit package.

Joan Monin:

Yeah, I think, I think that would be a really good way to do it, because that's actually where we've gotten the most interest is from, like, companies that found out about this and they're like, oh, we'd love to give this to our employees.

Zack Demopoulos:

That's

Selma:

great idea. Yes, fantastic. I know you've done some work on spousal relationships and caregiving, and that's very, very interesting to me. So not long ago, back in April, we did a newsletter that was focused on that relationship and how it really is very different from any other type of care, care relationship. And also, one of the things that I got out of the research was that the expectation is much higher when it's a spousal relationship, because society is expecting you to go 100% farther than you you would in a different type of relationship. It's like they go back to the the wedding vows of till death do we part and you're going to be there to do it all. Well, you can't do it all if you're working. There are kids to, you know, take care of, and you have a spouse that needs you as well. So can you just talk a little bit about some of those challenges?

Joan Monin:

Wow, there's so much to talk about here. It's like, we're gonna start, and it's interesting, because there's like, a legislation in Connecticut where you can be paid to be a caregiver for an older adult, but it only applies to people who are not spouses. Mm. Wow. So, you know, I have a friend who is trying to get it so to convince, like, the Connecticut government to say, like, we should also include spouses. I think at the end of the day, it's like, all about money and not wanting to have it be spread out to too many people, because that would be a lot more people taking that benefit. But, I mean, that's something I'd like to learn more about with, like, policy and like, how we change people's minds about some of these things, because I think everybody has their own personal story. So I'm sure if some of those people who are in power as it starts to happen to them, maybe a villain and like, it really doesn't make it easier, or just because, in our society, we think that, like being married means, like, you just have to do that for free,

Zack Demopoulos:

doesn't make

Joan Monin:

sense. I know, like, what are we need to, like, make some really good points. I think Selma, you could probably do that for us, people with lived experience being a spouse of a partner, and especially like, adding on the working to although, like that would be a conversation to have too. Is like, is it necessary to be working, you know, and be a spouse to get that benefit. But I think your question really brings up that like society part of caregiving and what we expect from people, and maybe even like gender differences and things, because I know Zach was talking about like, oh, it's really hard to be a sandwich caregiver. And I think usually people are thinking about the mom like the daughter mom, because they have to do so much. But if we think about fathers or sons also getting involved more too, like you Zach, who have been doing that that could change things a little bit too the way we're viewing the sandwich caregiving, right? Because right now, women are under so many roles, like, okay, we're working, we're parenting, and we're most likely to be taking care of the parents like that's the biggest gender difference. Is older adult caregiving, with women being the caregivers, whereas parenting for young children has evened out a bit more. So I think that's kind of an interesting, you know, thing to think about with society and policies and how we care for older adults and yeah, and we just see, like, differences in demographic shifts and families, but moving away from policy to more the close relationships work too Selma is that I've done most of my research has actually been on spouses and how they navigate changes together in their relationships. Because if you're in a close relationship and you're two older adults, it's likely that both of you will need care from one another at some time or another. And so a lot of my work was trying to understand, like, how do you care for each other through different stages? Like, maybe you got, like, a hip replacement, and then your partner had to take care of you for that time, but then that was over, then the other person got pneumonia, and then you had to take care of that person. And, like, how do spouses kind of do? Well, um, like, compared to other spouses, and what I found was that the more both people are willing to, like, be mutually supportive to each other, like, when the need is there, the other person can kind of be like, Yeah, I'll be the caregiver right now, you know, like, or, and then the other time the other person needs it, they're like, oh, I can be the caregiver. And they're working together, like as a team to care for each other as they need care. But then when it comes to something like dementia, or, you know, Parkinson's or things like that, where that role kind of shifts, it can be extra hard, I think, for spouses, because that power dynamic kind of shifts. And for a lot of people, like, if you're in a marriage, you really like, your identity is often shared, and so that kind of overlap, and like this, we shared identity can make it really hard for both spouses. But you know, thinking about from the perspective of the spousal caregiver is that they're kind of. Losing part of themselves in a way, and sometimes they're losing their friend network because people don't want to show up when one of the people has dementia. And how do you keep those people still coming around, engaging with you both and people who are really close to one another, sometimes when they think the other person is in pain or suffering, they actually like, really feel like they are in pain and suffering. So it's that spousal closeness that sometimes can be a little bit harder than potentially, if you're a child and a parent, because as a child and a parent, you still love each other, but you didn't pick to like, get married to that person you know from day one. So yeah, I hope that explains a little bit I could do more like 20 years of research. But yeah,

Selma:

this is very helpful, because it really it sticks in my mind some of the data around that, and one, one of the pieces that that I vaguely, that I clearly actually remember, is the high divorce rate of spousal caregiving is, is astronomical, but, but I can see why.

Joan Monin:

Yeah, I ended up doing study on on that, because I did notice that in some of the early caregiving groups for the Alzheimer's Association around here, they were seeing that whole bunch of them were getting divorced, yeah? And I was like, let me look at this in, like, a large representative sample in the United States, and we have a study that shows that, yeah, it's like the early stages where people get divorced, if they've made it all the way to the end stages, then they're less likely to get divorced. But that makes sense, right? Because you committed, you're like, okay, that person, but it's really that part in the the beginning. And I think a lot of it has to do with, like, not being diagnosed right away, too. So there's, like, a lot of people who have, like, frontal temporal dementia, where it's the personality changes that are first. So you don't know the person has dementia. You just think they're being like horrible person, and then that's why you get a divorce. And then after that is when they get diagnosed with FTD. So it's not across the board like that type of dementia, like, I don't want to characterize anything, but like, certain types of ways that the brain is effective, affected by dementia can cause, like, more of those personality or erratic behaviors, rather than, like the first science being like forgetting things, which I think people see more as a warning sign, but the other ones are really hard to detect.

Selma:

Yeah, wow. Good information.

Zack Demopoulos:

Your research is magnificent. It's, it's needed, it's, it's important, and it applies to not just society or under the in the home, but it does apply also to work and employers. And as you mentioned with the whoop technique. That's That's great. We could talk to you for a couple more hours, but we've got to go before you, before we let you go, though. So what are you working on now? Can you, can you share what's your latest research?

Joan Monin:

So yeah, I mean, I'm actually, like, really excited that I've kind of shifted. I mean, I'm still really interested in the perspective of care partners, but I think I've focused so much on the perspective of care partners, kind of the to the detriment of really listening to people living with dementia. And so a lot of my work right now is kind of centering on the experiences of people as they're starting to live with dementia, and society is telling them like, you that's the end of your life, you will not be able to live well, and saying like, hey, there are options. You are still alive and you can live well with dementia, but as a society and as a community, we need to be thinking about ways to support that, you know, we support kids with developmental disabilities so that they can live a good life, right? Why don't we do that? When someone is diagnosed with dementia, we pretty much just say like, Oh, your life is over. Go on a vacation, come back, you know, while you still can, and then we'll see, like, how far it progressed. And, you know, take this medication that doesn't work, and then we'll see what happens. There's a lot of things we could be doing in that time, right there. There are behavior. Behavioral things, there are supportive therapies. We can intervene a lot, a lot earlier. So that's what I'm trying to work on right now, is spreading that message, because I don't think people hear that message very much. No, no. I'm always surprised, like when after like an audience hears me and people living with dementia who come with me to talk about this, and they're like, never heard of that before. And I'm just like, Okay, well, I need to be going around telling more people about this then.

Zack Demopoulos:

So, I mean, some of the old literature painted that picture where it's the this is it, right? I mean, at the end of the day, this the new the new findings and research and statistics are showing that, you know, we could do something about this. And there is not just not medicine, which unfortunately hasn't really made big progresses, but there are methods, techniques, and so, because, unfortunately, with caregivers of people with dementia, that's it's a long it's a long road. It's a big journey.

Joan Monin:

Yeah, and when you decrease the suffering in the person living with dementia, you decrease the suffering and all the people around them. Imagine the amount of good that you could do just by helping that one person.

Zack Demopoulos:

Wow. Dr man. And thank you so much for being here with us. How can people find more or learn more about you or connect with you if they want to?

Joan Monin:

Well, I have, you know, by Yale website, Joan Mon, and you can just type it in, send me an email. I think that's, yeah, that's pretty much how you find me.

Zack Demopoulos:

Well, we'll add the links in our show notes again. Thank you so much for being here. You're just great guest and

Joan Monin:

wealth of information. Thank you. I'm excited to work with both of you in the future.

Zack Demopoulos:

I got a feeling we're going to see you again soon. Yes, yes. Thank you.

Joan Monin:

Take care. Bye. Bye.

Unknown:

Thank you for tuning in. Be sure to catch new episodes of working caregivers the invisible employees podcast every other Tuesday. Please also visit our website, invisible employee advocates.com to subscribe to our newsletter, purchase our book and learn more about how we can help you strengthen your workplace to become more supportive of working caregivers. You I'm.