In this episode, Dr. Paula Duren, Executive Director and Founder of Universal Dementia Caregivers, joins the conversation to share her journey in dementia caregiving. She discusses the challenges, strategies, and emotional experiences involved in caring for loved ones with dementia, offering insights into the importance of community support, positive psychology, and legacy planning.
Timestamps:
[00:00] Introduction
[03:00] Dr. Paula’s Caregiving Journey
[09:00] The Role of Positive Psychology in Caregiving
[14:00] Supporting Caregivers in Need-Based Communities
[20:00] Strategies to Engage Loved Ones with Dementia
26:00] Legacy and Life Planning for Caregivers
[34:00] Upcoming Caregiver Events and Workshops
Guest Contact Information:
Universal Dementia Caregivers
Contact Information:
Southeast Michigan Senior Regional Collaborative (SRC)
Follow SRC on Social Media:
Neighborhood Legal Services Michigan (ELAC/NLS)
**Kristie:** [00:00:00] Welcome to Caregiver Conversations, where we explore the challenges and triumphs of caregiving with compassion and expertise. I'm Kristie King, Executive Director of the Southeast Michigan Senior Regional Collaborative. Today, we're honored to have Dr. Paula Duren join us. Dr. Duren is the Executive Director and founder of Universal Dementia Caregivers and has a wealth of experience and knowledge in dementia care. Welcome to the show, Dr. Duren.
**Dr. Duren:** Thank you so much, Kristie. I'm excited to be here.
**Kristie:** I'm so happy that we finally have a chance to sit down and have a conversation. I can remember meeting you years ago when I actually came on board at the SRC. It was me just trying to really learn about some of the partners in the community, although I had been in the community really learning about new partners. So I'm really happy that I'm here today to learn more from you and have this opportunity to learn more about universal dementia care.
**Dr. Duren:** Thank you.
**Kristie:** So, Dr. Duren, could you start by sharing just a bit about yourself and your journey in caregiving and establishing Universal Dementia Caregivers?
**Dr. Duren:** Yes. First of all, I'm a psychologist by training. My journey started when my parents became ill. My mother had Alzheimer's, and my dad had vascular dementia, and it's different when it's really in your house and when you are living it. We found out that mom had Alzheimer's when she got lost in Novi and she was very confused. She didn't understand where she was. God put her in the hands of a kind storekeeper who called me and said, 'Your mother's confused.' So we went out to get her. That was one of the first clear indicators that we had to do something to support mom more effectively. My father, we learned he had dementia when he had a car accident. He chose to hide that he had dementia and was on medication for two years before anybody ever noticed anything. It was at that point it's like, okay, God gave us warnings. Here they are. How do we now take this moment and figure out as a family, how do we care for them in the most effective way? And how did they participate? Because it's not just us taking care of them, they're also engaged in this whole dementia process themselves. So that's how we got started. And then I kept a journal during this process, and I thought I was writing all these profound things about insights and what was going on and all that stuff. And then I decided to read it one day because I'm like, well, maybe it'll get published. I was so sad, Kristie. I was angry. It was really my tool for venting. And so what I decided is that this probably is not the best thing to publish as it is, but I'm a spiritual being. And so I said sometimes I believe we go through things for ourselves, then other things we go through for other people. And I asked God and I said, if this is for somebody other than me, this is what I need to see and I won't go through the whole story. But I went through that and he showed me those things and I said, this is a gift for not only me but for others. So I decided I would start UDC Universal Dementia Caregivers. It was just a vision that I would have the opportunity to share learnings, insights, experiences with others, but primarily African American caregivers.
**Kristie:** And we never think about things that we're doing in the moment. So you never thought about, 'I'm just here journaling, I'm just writing some things down.' Like you said, I was being prolific, I'm gonna just, you know. But then when you look back on it, you see how significant it was. I think one of the things that I heard from me was your purpose. And I know you know, you said you're a psychologist. Did you ever think that that would be your purpose, that your purpose would be in the position of caregiving as it is?
**Dr. Duren:** I never thought that. I really didn't, because I didn't fit in the traditional role of psychologists. I. But I realize you have to be open to the directions that lead you're led to, um, when it's given to you. And I call this my ministry. Absolutely. This is my ministry. And so people will be like, you're really passionate. I said, anything that you feel like yours is your ministry, you're gonna go forward. I don't care what the obstacles are, what are the issues you don't understand? And I'm telling you, there's a lot of stuff in this whole arena. Especially in setting up nonprofits that I totally don't understand.
**Kristie:** Absolutely.
**Dr. Duren:** But what I do understand is that God has given us a gift, and I have that gift and I share that gift, but the gift I get back is dealing with other families and supporting other families. Kristie, I got a call just yesterday, the mom, we supported the family, and the mom just passed and they invited me to the funeral. Those kinds of moments say, well, you made a difference in the life of this family.
**Kristie:** And you never know, but you continue to walk in. And I always say, and I've said this before, even on this podcast, you found something you love to do. You never have to go to work a day in your life, right? And when you know that you're working and your purpose is easy,
**Dr. Duren:** yes,
**Kristie:** you're up late, you're taking phone calls, you have to do the day to day of managing a 501(c)(3), and all that comes with that, which we know there's tons of things. At the end of the day, when you can give back into the community, that's what feels good. That's what leads you down. So talk a little bit more about, um, UDC and the work that you do with the families under Universal Dementia Care.
**Dr. Duren:** Well, what we do is we offer, um, lunch and learns every month. We will provide a topic-driven conversation around something associated with caregiving, um, and oftentimes around dementia caregiving. We, last week we did a session on caregivers and guilt. That's a big issue that, that anybody that's cared for someone knows. 'cause you never feel like you're doing enough. You don't know that you're doing it right. Whatever right is. Yeah. And so every month we, or we may have a guest come in and talk to us. We had someone come in and talk about diabetes and dementia. So educating the community on those things that impact the potential of you developing dementia and things you can be doing right now. So that's the Lunch and Learns we're known for our bootcamps. Our boot camps are a full day of events, and I know that's something we will probably detail later, but if it's convenient, I can do it now.
**Kristie:** Please do.
**Dr. Duren:** The boot camps are a learning experience where what we, it's designed to create community. I want people to walk in and feel safe, feel connected. Feel engaged. And in that also feel like that they can tell their truth. 'cause everybody needs a safe space to say out loud, I don't wanna be a caregiver, that's it. Uh, I'm tired. No. If she cusses at me one more time, I'm gonna cuss back. Do we mean to have that ability and a space to do that? And so in addition to giving having a safe space, we're cultural, uh, in terms of dementia. We know the dementia literature, but we also as a person of color. Understanding the cultural implications of training and care, and we provide that support. And then not only do we train, we teach, we experience, we learn, we share and care. But then there's a room full of other caregivers just like me.
**Kristie:** Yeah.
**Dr. Duren:** That's powerful. Yeah. That someone who looks like you, says. I feel the same way too.
**Kristie:** And I think even in those spaces, you know, one of the conversations we often have is, am I a caregiver? Mm-Hmm. I didn't know I was a caregiver. Mm-Hmm. Because guess what? This is just what I do. That's right. This is just what I'm supposed to do. And culturally speaking as an African American person, it's just what I do is what the space that I walk in is just always talking about my dad. My dad cares for everyone. I guarantee you he never considers himself a caregiver. He's going to doctor's appointments with people and getting medications and doing grocery shopping. Mm-Hmm mm-Hmm. All of that. But he would never consider himself a caregiver. 'cause that's culturally what I know. It's what I've always seen in my family. And so coming into a space to have that just solidifying. Validating those experiences. Mm-Hmm. And those feelings. I just think that is so, so very important. I'm, I would love to drop into a, a bootcamp.
**Dr. Duren:**
I love that. You're welcome. Anytime. The challenge with, and echoing everything you said and supporting it, the challenge is sometimes we're caregivers and we're doing too much. Mm. And we're not caring for ourselves because we're not even identifying that we're caregivers. So one of the things you can learn there is that at some point you gotta anchor it. I'm a caregiver. And this is what that means. This is how it could impact my life. These are some things I need to do for me. I was in a meeting, we had a meeting that I was supporting the meeting, and one caregiver said, my mother can never live with me, and I was good with that. A lady on the other side of the room became judgmental and said, you wouldn't take care of your mama. I said, let's be at peace at this moment. The issue is each of us has to decide what are we willing to do? What can we do? And am I the best source to take care of my loved one? Um, and you're right, because the expectation is there, spoken and unspoken. We've been trained that way. And those of us with spiritual backgrounds, we know that God said that part of our responsibility is to care for one another.
**Kristie:** That's right. That's right.
**Dr. Duren:** So it's giving people permission that if you decide you can't be the caregiver, that's okay too. But we had to fight off all the other opinions that that other people might have.
**Kristie:** Absolutely. So one of the other things I wanna kind of piggyback on that a little bit. Part of your approach in Universal Dementia Caregivers and the curriculum that you have is the positive psychology training approach. Can you talk a little bit about that and kind of tie it into what you've been talking and kind of laid out for us already?
**Dr. Duren:** Okay. Well, positive psychology is all about focusing on the gifts, the talents, the spirit, the character in this whole work around dementia. We think about it from loss. They're losing this, we're losing that. I've lost my, my, my life. I, I can't do this. And I, so it becomes a frame of negativity. But if you can frame it positively to say, look at what gifts still exist. Look at what things I'm learning. Look at what, what opportunities I have to give. Trying to reframe that and build that into the training. Because part of the, the goal of dementia training is to reinforce connections. Reinforce communications. Reinforce your own personal powers that you have, and reinforcing the independence of our loved one, living with dementia as long as possible. And so I build that into the learning experience, that it's all about connections. I say the caregivers have the ability to really influence several things. They influence the relationship. Between them and their loved one because they help to create the world around them. Mm. And, and, and as well as partner with their loved one to create what they want to have happen in their lives. They also in control themselves. And sometimes they'll tell you, no, I don't. Well, I'm giving your power back. Mm-Hmm mm-Hmm. So you can determine how healthy you'll be and what you will do to nurture yourself. And you control the environment, the, and you control the relationship, the environment, and yourself. We know that the environment is so key when you're starting to deal with someone, when you're loving on someone with dementia because the environment could make things worse or they could make things better. So showing them their personal power and making it a positive experience, and I know that there are days you don't feel like there's anything possible. Anything possible that you do, nothing is working. But the bottom line is you still have the ability to make decisions to look at how we build our loved one up. Look at how we reinforce how important we are. And most caregivers don't think they're very important. Mm-Hmm. But they are the backbone. Mm-Hmm. Of our healthcare system. Kristie, imagine if there were no family caregivers.
**Kristie:** Absolutely.
**Dr. Duren:** Who would take care of, and I'm gonna put me in this category. Who would take care of us.
**Kristie:** Yeah. Yeah. I think about those family meetings I would have when I was a dialysis social worker. Those were caregivers. Mm-Hmm. Those were the people that I expected to give me answers, um, in that, and it's really, it sounds like it's a, a very person-centered approach and it's very empowering, so, very much so. To empower the caregiver and to empower the family as a whole.
**Dr. Duren:** Yes. And let me use your word empowering because dementia nor first reaction is not empowerment. Mm-Hmm. I wanna reinforce empowerment. Not, oh my God, I gotta deal with this until he dies. And I love them so much and I'm, I'm, I'm not, no. I have this gift, I have this moment. I have this opportunity. It's not gonna be easy. It's gonna be hard work, but it will be hard work.
**Kristie:** Yeah, hard work. It's a gift. You know, you said that. And it is a gift. It's a gift to be there. It's a gift. When I'm sure when caregivers really look back and I'm even gonna talk about my own experiences, think about my own experiences, it's a gift. Mm-Hmm. It's a gift to be in those positions. And it is hard. It is difficult. And sometimes you have to let the person do what the person does when they're able to. That's right. If it's not dementia-related. Right. But at the same time, thinking of it as a gift, thinking about those memories. 'cause I have memories with my brother that I can laugh, I can laugh. My brother passed. Someone a couple of years ago, but just to think through that as a caregiver along his journey, many years journey with diabetes and just think through that. It was a gift.
**Dr. Duren:** And you know what, sometimes we forget the moment, the positive moments because sometimes we have some very challenging moments. Um, and it's important. And I, I, the term glitter came to me one day and it's glitter it. What it does it do, it sticks on you. It's glittered, it's pretty, it's, you know, all those things. Mm-Hmm. And I said, what if we could think about all the gifts that we're given and they stick on us on an everyday basis, and every now and then we would just think about, look at that glitter and say, wow. She said, I don't know your name, but I love you. You know, just those moments are so powerful. Yeah. But we forget them when the moment when they, this goes on or that goes on. So we reinforce that's that whole name frame around this is a po. This can be a positive experience.
**Kristie:** That's a very good, um, visual of the glitter, um, and all the positive things sticking to me. So now I'm gonna be thinking through that and thinking, thinking about that. So we can go move on a little bit. Can you talk about the importance of supporting those who need access to caregiving resources and information specifically in need-based communities, vulnerable populations?
**Dr. Duren:** You know, I was reading recently some of the literature around health equity and it's all based on some people not having access to healthcare. Some people, not even once they get access, don't trust the access that they're given, not being viewed as a reasonable human being and received. So I, I think about that in terms of the work I do, I think it's important that we provide whatever resources are available, but we also need to be consistent in providing those resources. People will often say, well, I really don't have access to people of color. Well, if you drop in and visit every now and then and disappear, you'll never get access. It's about building relationships. And it's not just people of color. People wanna know you're there. They wanna know that this is not a research project where you get your information and you're gone. Absolutely. Um, and we could have a whole conversation about that. And so our, our, our training program and our, our, our whole piece of work is, is evidence-based evidence-based on all black folks. You know, and I said, well, I only have, uh, the sample was only excised, but I said, and it was helped designed by people of color. Mm-Hmm. So people need to have, be able to get access to the resources and part of it is they don't know what they are. Even though we're constantly telling them, but we have to find more and more ways to reinforce because Paula Durn and University of Dementia only is available to do this piece. It's about collaborations. Absolutely. It's about bringing in those groups who can provide food or who can provide access to medicine, or who can do this. I don't know that stuff. I know where my wheelhouse is, but I also know that there are people out there that can do so many things better than I can. And so I wanna partner with those folks so we can provide access. And one of my, if you look at one of my, my, my mission statements, I wanna be a trusted vehicle
in the community that people can say, go ask Dr. Dur. She may not have the answer, but she may know somebody who has the answer. So, back to your question about, uh, resources, they're available, I. There are lots of 'em out there, and now this whole conversation about caregiving is really popular, and so there's money being thrown at it, and so here's a real opportunity to give people true access, but also celebrate them when you have them in your space.
**Kristie:** One of the things I was thinking about, and then you said it was the importance of trust.
**Dr. Duren:** Yes. The
**Kristie:** importance of trust and providing resources, people wanting to come to you to ask for those resources and making sure that what you send them, you know, we use this term, we wanna close the loop. So, you know, for us, that pretty much means when I give a resource, I'm gonna connect to a resource and I know that resource is gonna connect to that person and make whatever needs they have. They're gonna satisfy that. And, and building that trust specifically in communities of color is important. Mm-Hmm. Because we know the history. We've experienced the history as African American women. Right. You know, we continue to experience it every single day. And of course, your wisdom is. Far beyond my wisdom, but just knowing that we are in this place, and it goes back to me when I think about purpose. We are in this place to fill those needs and fill those gaps and bridge those connections. And so I'm, once again, I'm, I'm very excited to be a partner of yours. Let's talk a just a little bit more about some strategies to engage the hearts and spirits of those living with dementia, preparing those caregivers with those strategies to engage. What does that feel like? What does that look like for you in the space?
**Dr. Duren:** Well, we have designed, uh, a book called Flowers. First of all, imagine Flowers. And in the book, it makes our loved ones living with dementia. Flowers. I wanna, again, I'm trying to change the headset and flowers all require different kinds of support. A dandelion needs virtually nothing to grow, but a Rose May require more. And some of our loved ones behave like dandelions. Some of us behaved like dandelions. Uh, but so what we've done for each of the, the flowers, I've given a care strategy. So one care strategy says comfort me with touch. And so I'm back to how is that a care strategy? Well, it's one of those things you think about the power of touch. What happens with older adults, a lot of 'em are touch-deprived. Mm-Hmm. Well, if one of, if I can teach you two or three massage techniques where you get to engage your loved one. It's not a task, you know? 'cause most of the time when we're touching our loved ones, it's a task. Yeah. We have to get 'em dressed, we have to bathe them. I bring them ause in, and again, I'm partnering because I, that's not my gift. Mm-Hmm. She teaches techniques of touch and we give them the oil and, and, and the lotion and those kinds of things. And we help them know that in order for you to be able to touch therapy, your loved one, you have to be, you can't be stressed yourself. Mm-Hmm. So it's designed Mm-Hmm. Our strategies are designed to help the caregiver. The loved one at the same time. So we have a variety of strategies that are, are based like that. Um, help me feel safe is another one, because right now think about it, a person with dementia may be here with me in tune knowing what's going on this moment, and then that quick, they're not connected anymore. Part of our goal and responsibility is to teach you how to make them feel safe, because again, I, I can't imagine what it's like. To not know who I am. Mm-Hmm. Or not to know you. I, I knew you two minutes ago and now I don't know who you are. And if I can get you to truly understand that, and too many families say at the early stages, they clowning, you know what? Ain't nothing wrong with mama. Mm-Hmm. My mama's always been like that. Mm-Hmm. Well, we need to get rid of some of those, those things that we say like that. Yeah. Because we treat them based on the notion of they clowning. So we teach you a number of different strategies around how you care for the loved one while caring for yourself. So that's a Flowers tool. We also have designed a tool that allows families to sit down around the seven care strategies, allow you to sit and talk about what my needs are moving forward. So before I am the early stages of dementia, it's one of the things you need to start doing is talking about what do you want, what are you looking for? How do we engage you, how do we keep active? Uh, do you wanna be resuscitated? Conversations that we often put off. Because we're not comfortable with him. A friend of mine, a professional too, she said, I can't have that conversation with my father. I said, why he might die. I said, girl, he gonna die anyway. So are you. You all are right at one point or another. So it's focused on understanding what our issues are and what things are getting in the way. So they take this tool and they walk through what are some of the things they need, and it's based on the care strategies.
**Kristie:** Interesting. Interesting. So
**Dr. Duren:** we have put together a number of tools that we give away to, to, to the caregivers in our training sessions.
**Kristie:** And so these are tangible materials that they're taking along with them? Yes, yes. And it's really, you said something in the beginning that I think is important is the narrative changing the narrative, changing that thought process around dementia. 'cause I definitely, I would say over the past year. Just engaging more people. Mm-Hmm. Whose parents have dementia. Different forms of dementia has been really important about me thinking differently, even if I have to deal with that with my parents. Right. What does that look like? What does that feel like? And I think one of the other things is how do people wanna live? How do you wanna live? Absolutely. How do you wanna move forward and making those decisions while we can. Yes. And how important that is. Let's talk a little bit about going through the bootcamp itself. So you've talked about the different techniques that you guys use and you have an upcoming event. The caregiver's passage through Dementia Bootcamp, and it's scheduled for November 9th. That's your next training coming up? That's the next bootcamp? Yes. The next bootcamp, yes. Tell us more about, a little bit more about what to expect from that bootcamp. How many weeks is it, or days? Is it an all-day event? What does that look like?
**Dr. Duren:** Well, first of all, people have to register to come. That's a requirement. Our goal is that you're a caregiver because that way we can help address real issues right then. Hmm. So you register and you start, we start out the day we give you a T-shirt. Why is that significant? We're gonna, we're gonna start building community. So here's an identity tool to say we're part of this group that deals with dementia and, and I've got a new family. So I start there. We give a lot of gifts away during this thing because we wanna research talks about celebrations and recognitions. Mm-Hmm. And we provide those during the training. We feed you. You know, if you're going to close something, something with most and no, I won't say that. You know, we feed you. I know what you gonna say.
**Kristie:** I got you.
**Dr. Duren:** So we feed you. So we provide a wonderful breakfast and a great lunch. And, and, and in the process we learn your story. Mm-Hmm. We give you a safe space to learn your story. So we start out talking about what is dementia?
So we get people to tell us what dementia is and from let them describe it, what are they seeing in their loved one. That way we can find out where they are, and we could then even tailor the learning to help address any issues they might be dealing with. So then we talk about how the stages of dementia, what co what, what are the, um, causal factors of dementia? What are things are in our control? What things are not in our control? Because I'm a believer, those things that are in my control. I'm gonna do my darnedest to control them. So then we teach very specific techniques. We also have some videos that, that we show. Uh, one is of this ballerina dancer and she has dementia, but she remembers dance, so they put her music on and she did like something like the Nutcracker and all that, the beauty, and it shows her just hearing the music. Brought back the movements. Mm-Hmm. So that's one of the things that's so positive. 'cause a caregiver, when that happens, it's like, oh my God, that's beautiful. So we reinforce the use of music, how you use music, uh, to support your loved one. So, um, so they, we go through that and before the end of the session, you have learned tools, you've learned techniques, you've practiced some of them, you've gotten some, uh, we bring an attorney in because early in the disease cycle we need to be talking about. Is your paperwork, right? Absolutely. Too many people don't have the right paperwork, and if you don't, probate court is gonna take your money. So we bring in an attorney that works with us and oftentimes another partnership, uh, the Elder Care Law Group. Mm-Hmm. They are so, such, so wonderful. Shout out to them. They provide a lot of support for us, uh, and we provide a list of free as well as other attorneys that you can, uh, call on and talk about the documents you need, how you get them. Where you should keep them, who you should get copies to. So they leave with a lot of information and knowledge in that one. It's an all-day experience, basically.
**Kristie:** So it's interactive. It's not just all lecture, lecture, lecture, but it's really interactive. Giving them a, like you said, it's giving them a safe place. It's giving them a form of inclusiveness into a new community.
**Dr. Duren:** Absolutely. Otherwise that would be so boring.
**Kristie:** It it, and it would be a very long day, I must say. It would be a very long day to be an elector all day long. Yeah. So how do you see these events supporting community for caregivers, building a community for caregivers?
**Dr. Duren:** Well, first of all, they leave the room saying, I am a caregiver.
**Kristie:** Mm.
**Dr. Duren:** Which is what you said earlier, many of us don't even recognize that we're a caregiver. Mm-Hmm. If you leave the room saying, I'm a caregiver, I have some resources and I think we can do it, to me, that's the wonderful start of community. And you give them phone numbers of each other. They can, they can share each other's numbers. I said they have the power to do that. So if there's someone you need, call them. Uh, we also have a Facebook page for caregivers that we try and communicate with them and we'll ask questions to get them involved and engaged. Uh, so the community is fine. Having people you know, you can trust and rely on. So I, I'm constantly inviting people in to talk to caregivers that bring an additional gift that we don't possess and that's important. Mm-Hmm mm-Hmm. Bringing in gifts that, that you don't have, but you know, exist and the caregivers need,
**Kristie:** like you said, stand in your lane. Yes. You know, you know what you're good at.
**Dr. Duren:** Absolutely.
**Kristie:** So your book on the Front Porch Stories of African American caregivers, it highlights the personal accounts of families caring for loved ones and dementia. I kind of wanna talk about what inspired you to write this book, but I also wanna get your feedback on a quote in your book. The Ford of your book was done by Dr. Peter Lichtenberg. We all know him from Wayne State, right? Maybe not we all, but we know him. Yes. From Wayne State. And there was a quote that I thought in the Ford of your book was very significant, and it says, A roadmap for African American caregivers on how to appreciate the person who has dementia, how to survive and grow during caregiving, and how to use the experience to enrich one's life. I thought that quote really summed up a lot. It made me think a little bit differently and it, and I just kind of wanted to get your kind of reaction to that. And how did all of this come into play?
**Dr. Duren:** Well, first of all, I love Peter. He was one of the first people I shared my idea with. And I, and as you know, if you share your vision and your dream too early with the wrong person, you can truly get discouraged. Mm-Hmm. Um, and so he said he loved the idea. He thought that this would be a wonderful approach and that the positive approach to to, to this whole process would, could help build and share and provide a, a much needed resource. [00:27:00] Um, because a, a lot of people are doing this work. We specialize in supporting African Americans. We don't turn anybody away. Right. But we specialize. So in doing the work, it was so a gift and a blessing that he, he blessed it basically. And then we started developing the tools and the material and, and so let me see if I can reflect again on what the que So the inspiration was my parents basically were the inspiration of me doing this work. And then I was also a therapist at the time. Mm. So as a therapist. You are often engaged in the lives of people. And Kristie, I really counted a gift when somebody invites you into their life, share their story. 'cause that's powerful. To share healing and sharing their story and share their story. And that's what was given to me. And so the book is a essence of sharing people, sharing their stories. Us having done some work with [00:28:00] them. And the families are just wonderful and the pictures are so authentic. Mm-Hmm. And, and, and every family had some unique pieces to it. There was one family that I remember that the, uh, caregiver was a little upset with the family 'cause they wouldn't help. And that's really common among caregivers. But the issue is they hadn't asked for help. Well, they should be able to read my mind and, and figure out that what I, they see me every day doing all this stuff, and I, I always say, yes, they should, but we are not gifted like that. So ask for what you want. And then if you find out people won't help, then that's a whole nother conversation. You then put another strategy and approach. But I've learned that a lot of people don't know how to help and they're scared and they're uncomfortable, and they're worried. So we all deal with this difference in different ways. So that was a really good piece where she came to grips with, you know what, you're right. I'm mad at
**Kristie:** them and I have never asked for help. Makes you, makes you look at yourself in a different way. Yes. And the experience in a different way. [00:29:00] What are some additional key takeaways from your book that you think are really essential? So besides asking for help, ask for what you need. 'cause we are not mind readers out here. That's right. But what are some additional takeaways?
**Dr. Duren:** You cannot do this alone. Let me start there. And there are many caregivers who feel like no one can do it like them. And I say, you are absolutely right. You can do some things, but you can't do all things. Mm-Hmm. So getting them to open up and ask for help and change their notion of what help is. Um, and so there was one family we supported and the dad said, my daughter comes over here once a week and that's all she'll
do. I said, do you let her do that? He says, no. I said, tell you what? Go back to her and say, I'm really looking forward to you doing that hour with mom. Mm. She will really enjoy it. After he gave her permission to do what she could do, she gave more. Mm. So give people the space to help if they, if they really are interested in helping. So you can't do it alone. There is no shame in having and living with a disease of dementia. Too many communities [00:30:00] still to this day. I ask the question, is dementia a mental illness? Half of the room will raise their hands and say, it is a mental illness. It is not a mental illness. And you know what currently happens with mental illness in the black community? Mm-Hmm. That's why I'm so excited about these outreach efforts. I see all the time and the commercials targeted at people of color to say, mental illness is can, you could get help? Mm-Hmm. But dementia's not a mental illness. It's a brain disease. So now I say, okay, if I had cancer, would I hide it? No. I'd be out there trying to ask, girl, you say you had cancer, tell me something about your cancer. Mm-Hmm. As a, as a family member looking for support. Um, so you, it's not a, there's no shame in the gang. The other one is you have the power as a caregiver to create a safe space for your loved one. And I mean that you have, uh, my mother was, had hallucinations and do on her journey, and Ms. Johnson would come over and visit. And so I would always go in and she's talking to Ms. Johnson [00:31:00] and I say, Hey, ma. Who here today? Ms. Johnson. I say, is she nice? Yes. She's so sweet to me. I said, tell you what, if she get ugly, let me know because I banish her from this place. So it's one of those things of being there in the moment with them. 'cause sometimes it's better to just simply be present than anything else. So those are some major ones.
**Kristie:** Absolutely. So what is one memorable story from the book that showcases that resilience and compassion of caregivers?
**Dr. Duren:** There's a family in there where there are three sisters taking care of mom. And first of all, you've got three women and, and I, I'm not gonna be stereotypic, but I asked them, how are you all working together? I say, they say women can't work together. They said to me, the only focus we have is mom. We get our own stuff outta the way, and if we see we're gonna get in the way, we move back outta the picture. That was so powerful to me that they are neglecting just the argument I wanna have with you just because they know mom would not want that to happen. [00:32:00] So it's three sisters working together to care for mom, and it's so powerful to see the roles each of them takes. And it wasn't like they planned the roles. Mm-Hmm. One is like the primary person who keeps her clean and cooks and one does the bills and, and that kind of thing. The other one seems like she breathes more humor than anything else, but it was just a wonderful experience being in their home. Being part of that. And then the after story is one of them developed dementia and the other one is sick. So now they, they had to, mom is now with a younger niece or younger niece, so that story stays with me all the time. You do what's best for the loved one regardless of where you are. If you can't do it, you find other ways to get it done.
**Kristie:** That's powerful. And it, it also reminds me of our caregiving story with, um, Stacy Gray. We interviewed her and she talked about the roles that her and her sister have. Mm-Hmm. Her sister and her niece, and how it just falls into place. Everyone has their own role in what they do. So today was a good day. [00:33:00] That is a video. We know that is also quotes from. Songs. I was gonna say that, but today was a good day. That video offers different perspectives on the day-to-Day, life of a caregiver is seen through the eyes of three southeastern Michigan residents who have taken on the many roles and responsibilities of caring for their aging parent. You were featured in that video. It was created by the Ralph C. Wilson Junior Foundation. How did that collaboration come about? What was that experience like for you?
**Dr. Duren:** I start by saying thank you. It was a wonderful experience
for me and it's a great tool. We use it now in training as part of our work. It happened like this. They came, they, uh, hired, they meaning the Wilson Foundation hired some folks to put together video on caregiving, and so they came to Michigan. One was David Wild and um, I think he's outta Seattle or New York or something like that. They put together a video and they said they came in town just talking to the organizations [00:34:00] that were doing work in the area of caregiving. We got referred two or three times. They said, you need to go talk to Dr. Duren. So he said, after the third time he said, let me go talk to Dr. Duren. And then we met. And then in that meeting he said, I wanna work with you. And, and it, then it proceeded, it proceeded from there on and it was, it was fun. I love that the caregivers got recognized, Kristi, I love that they, now they, they, they take a lot of pride. Mm-Hmm. Because it is important work and they give very little attention or sup support of people saying, you did a great job. Mm-Hmm. And the video reinforce that. So does the book. It gives them, gives them a place to tell their story. And as I said before, telling your story is healing. And, and many of us need to heal. And so here's an opportunity. So it's, it's out, it's, I'm excited. All I can say was a very good tool. Um, and I have to say that this organization through the Community Foundation also provided us with funding early on in our, in our process. Uh, and, and I appreciate the monies that they provided 'cause it helped us grow the nonprofit.
**Kristie:** And that video was done in 2020.
**Dr. Duren:** Yes.
**Kristie:** So it was released in 2020. So you guys filmed it early 2020, or was that 2019?
**Dr. Duren:** I think it was 2020. They, they didn't, they didn't lose much time getting it done. Wow.
**Kristie:** Wow.
**Dr. Duren:** They didn't, and, and I'm, I'm guessing,
**Kristie:** yeah.
**Dr. Duren:** Um, but, and it really is a wonderful tool.
**Kristie:** I watched it. It is very comforting. That's what I can say. It's very comforting and validating.
**Dr. Duren:** And the caregivers let you into their lives.
**Kristie:** They did.
**Dr. Duren:** They opened. I mean, you cutting off the whiskers on your mother's face.
**Kristie:** That is real personal. I was, yes. 'cause I was just like, oh. It took away all of the, we put on all the mirrors. Yes. It took off the mirrors. Yes. It was just there. This is what it is, and this is the reality of what caregiving could be. But it also, in my opinion, it showed the gift
**Dr. Duren:** Yes.
**Kristie:** That we talked about as well. How did the video impact you as a caregiver?
**Dr. Duren:** [00:36:00] Well, for me, I am always open to being influenced. I wanna always remain sensitive because sometimes you can get jaded.
**Kristie:** Mm-Hmm.
**Dr. Duren:** I always, because of all the work and all the pain and lack of validation and lack of whatever, the video and being allowed into the lives of these, of these caregivers, and they had all been in training with me. They'd all been in bootcamps with me or we supported them in some way. And so that was powerful too, that to see them on video, knowing where they started. Mm-hmm. The seeing where they are and how they've grown.
**Kristie:** They were very relaxed. They were just in their space telling their story. Right. It was, it was like the cameras were not there. They just told their story. So, Dr. Duran, this has been a wonderful conversation with you. Where can our listeners find more information about you and the work that you do with Universal Dementia Caregivers?
**Dr. Duren:** Well, we have a website, which is universal dementia caregivers.org. [00:37:00] We have a Facebook page. Which is also universal dementia, and we provide updates and information, training information, and the website provides all of the things that we do and our, our and, and the dates and times. You can always check our Facebook page because that one is more accurate and up to date if there are any changes. It shows there. And we have a universal caregiver page on Facebook where if you have issues or concerns or questions, you can bring them there. And we're trying to again, create a community online where we can talk to each other about issues and concerns. So, for example, on our website, we have also listed, we do a caring and sharing support group online. Mm-Hmm. So if someone wants to come and us talk about issues, join us for that. We also do an exercise program because you've gotta take care of your mind, your body, and your spirit. Mm-Hmm. And so we do that and we have videos that people can use and put together training programs. So those are the major ways. But you can always send me a note. My email is paula@universaldementia.org. That's easy enough.
**Kristie:** That's easy [00:38:00] enough. Make sure you guys get that information. It will be in our transcripts, and you can always stop this recording and make sure you write down that information. So that wraps up our conversation with Dr. Paula Duran, executive director and founder of Universal Dementia Caregivers, Dr. Duren, once again, thank you for sharing your invaluable insights and experiences with us today. You're welcome. And to our listeners, thank you for joining us on this episode of Caregiver Conversations. Be sure to subscribe and download the podcast on your favorite platform to stay updated on future episodes. Join us next time as we continue to explore important topics in caregiving and senior support. Stay connected with us on social media and share your caregiving stories. Until next time, take care and keep caring.