Memory Cafés, Caregivers, and the Power of Community

(0:01 - 0:34) So this is the first International Fellowship Cafe podcast. It's something I am launching on the second Monday of every month. I wanna see how this will go to bring someone who is very experienced in the field of end-of-life care into conversation with me, and then open up the conversation at the end for anyone who wants to attend the cafe, I'll look through the chat and see if anybody has asked questions. (0:35 - 1:13) But the idea here is to involve our communities more in end-of-life care and look for a creative way to do that. So it's wonderful to listen to a podcast and hear what someone has to say, but I wanna add a new element to it, which is that people that are interested get to ask, you know, how can I be involved? And so I'm just gonna ask everybody to turn their camera off for the first little bit of the conversation. All right, I think I might actually be able to do that. (1:13 - 1:37) So this will have to be our practice. Michelle, can you turn your camera off just for the first part of the conversation? All right, so we may have to work on this a little bit, but anyway, so that's the hope for today. And I also wanna say the International Fellowship Cafe is an outreach of the Death and Resurrection Doula training program. (1:38 - 1:52) We are beginning our second full year of this training. There's been wonderful growth. The Fellowship Cafe has brought some new people into the training program, which is just a really, really wonderful, wonderful thing. (1:52 - 2:07) So again, thank you everyone who has come out to be a part of this new endeavor. The International Fellowship Cafe, as well as this podcast conversation. So I'm gonna introduce our guest today. (2:07 - 2:20) Carole Klinger is the CEO and founder of Life, a dementia-friendly foundation. It's a 501c3. It's a grassroots outreach program. (2:20 - 2:50) It offers seven memory cafes that meet weekly and four-hour increments at the same location. This year, 2025 marks Life's ninth year of providing support to people living with dementia and their care partners at no cost to them. Carole began her career as an ICU nurse at a Cleveland hospital and served 10 years as director of nursing for Kendall at Oberlin, a continuing care retirement community. (2:50 - 3:18) For 10 years, she served as the Lorain County team leader and community facility coordinator for Hospice of the Western Reserve. Carole became a validation therapist in 1996 and a certified dementia practitioner in 2016. She studied techniques and gained knowledge and understanding of successful interventions for people living with dementia through course completion with Naomi Fell and Tipa Snow. (3:19 - 3:49) Carole is a master trainer for Dementia Friends in Ohio. Well, that is to me a wonderful biography and resume. And I can't think of anyone better than you, Carole, to talk with us a little bit about what you've done, what you're doing, and how we might get involved to make an impact in our own communities with those who have dementia and for their caregivers. (3:49 - 4:04) So the question I'm gonna give you to start is to tell us a little bit more about Dementia Friends to get started. That would be great. Well, like you mentioned, in 2016, I started the Life Memory Cafes. (4:04 - 4:26) And during that time, I was looking for a way to provide community education just for dementia in general. And rather than reinvent the wheel, I started looking and searching for things and ran across Dementia Friends Ohio. And it turned out to be quite a journey because during that time, I was still with Hospice of the Western Reserve. (4:27 - 4:48) I was able to get involved and bring the Dementia Friends Ohio message throughout Northeast Ohio. And I'll share a little bit about what it is. So what got me excited about Dementia Friends is that anyone can provide a Dementia Friends session with some training in advance, to be a Dementia Friends champion. (4:48 - 5:06) And so the champion basically takes a message out into the community. It's not considered an education, it's considered an information session. And what happens with that information is that people learn that number one, Dementia Friends is part of a global social movement. (5:07 - 6:34) And I think one of the things that excited me about it was the fact that I've been in nursing long enough that I remember over 30 years ago when we made a global social movement to change the way people navigated physically in our environments. You know, we made doors wider, we had ADA recommendations and all kinds of things happened that people could get on buses now, they could get inside buildings and it just made a difference in the lives of people physically. And I feel like the Dementia Friends movement is a first step movement to say, how can we help people in our community living with memory loss or dementia stay more independent longer? So the Dementia Friends movement was actually initiated in Japan, but it really took off when the Alzheimer's Society, which is different than the Alzheimer's Association, the Alzheimer's Society in the United Kingdom, they actually took the program and went out and talked to people living with dementia and said, what can I do, or what can we do as an organization to help you remain more independent? And through that, they crafted this 50 minute presentation basically, that helps people learn ways they can interact, they learn what people with dementia would want them to know to help them have a better quality of life in the community. (6:34 - 6:59) So that alone was exciting to me is that they went to the source, it's a movement to make a difference. So after you participate as a Dementia Friend, you basically agree to the five key messages that they share and you make a commitment to basically turn your knowledge into action. And it's just on your word of honor, you agree to do something different for somebody with dementia. (7:00 - 7:29) And it can be as big or as little as you want. They actually ask you to choose two or three things. So you might choose, you know, I'm gonna start visiting my aunt once a month in the nursing home that has dementia, I didn't know it really mattered even though she doesn't remember I was there, or I'm gonna initiate a fundraiser for the Life Memory Cafes, you know, whatever it is, it can be as big or as little of an endeavor, but you agree to do something different. (7:29 - 7:59) And by making that agreement, you actually start making changes for people living with dementia in the community. So it's exciting to me, I think it's really somewhat of a simple format, but yeah, it's powerful and it's interactive. So the way the message is delivered is either in person and it's an interactive program where like when I present, I ask people to read sections and I make comments about stuff, but everybody stays engaged. (7:59 - 8:28) Or you can do a virtual presentation, you can present for anybody anywhere or a PowerPoint type presentation. And then there's all kinds of things that come about or evolve from this program where they can be specific like to first responders, for example, or to churches, there's all different ways that you can put it into context for individuals. I do a lot of education for like trans bus drivers. (8:29 - 8:41) So they work with a lot of people living with dementia and they have certain regulations and things they need to do. So they need to know how to make a good positive connection right away. So it can go anywhere. (8:43 - 8:53) The program is very portable basically. So I became the master trainer which I need to update my bio. They changed it now to we're now called coaches. (8:54 - 9:12) And so now I'm a coach for the program. In the state of Ohio though, Ohio Council for Cognitive Health has the only licensure for the Dementia Friends Movement. And the reason is they award one license per state so that the integrity of the program remains the same. (9:13 - 9:35) So it's really amazing to me in 2017, when I started this initiative, it had just really pretty much came to Ohio at that time. And so we were able to really make a big impact in Northeast Ohio with the program. And now it's really traveled all over the state of Ohio with more coaches involved and et cetera. (9:36 - 9:53) But the coach then will provide training to champions, they call them. And the champions are the ones that take the message out into the community. And like I said, you don't have to have any special education as far as you don't have to be a nurse or a teacher or anything like that. (9:53 - 10:12) Anybody can take this message because you're just sharing information. And you take it out in the community, you share the information. This is what people with dementia want us to know to help them have a better quality of life in the community and even in long-term care or any other environment. (10:12 - 10:33) You learn how to quickly interact and connect with people and things to consider when you're working with somebody with dementia. You learn different tips and thoughts. But like just number one thing is what is dementia? I have people that come to the Memory Cafe that tell me my husband has dementia but it's not Alzheimer's yet. (10:33 - 10:46) They look at it as something different. And I always tell people dementia should never be your diagnosis. Dementia is the syndrome, it's the signs and symptoms we see lead us to that diagnosis along with other testing and things. (10:46 - 11:01) But it could be Alzheimer's, it could be a vascular dementia, Lewy body's dementia, frontal temporal lobe, head trauma induced. There's all types of reasons why someone might have dementia. But a lot of people really don't know. (11:01 - 11:11) And we do tend to use the word Alzheimer's as like the catch-all phrase instead of dementia. But dementia is really that catch-all. Dementia is like the word cancer. (11:12 - 11:30) If you had cancer, what kind of cancer would you have? So I like to start with that. People write off, struggle with what is dementia. Well, I think, and I have to say I'm included that that is something we commonly say because we don't fully understand. (11:31 - 12:03) And one thing that's gonna make our difference in our communities is we begin to understand a little bit more. And so I think, if someone feels called to this, maybe they're an end-of-life doula, or maybe they don't wanna be trained to be an end-of-life doula, but they do wanna do something along these lines, they could do a dementia friends training. Is that right? And what does it look like? What would someone have to do to get involved? They need to do it inside their state. (12:04 - 12:23) How does it work? There is potential opportunity to go. So for example, with Dementia Friends Ohio, we actually were involved with doing education for Michigan and Indiana. I was part of that, getting the champions trained basically. (12:23 - 12:54) So we train the champions and then we hold information sessions for everyone else. So depending on what someone, how involved they wanna be, if they would like to be a champion and take that out into their community, it could potentially be state by state, but if your state does not offer Dementia Friends, then you can work through like the Ohio Council for Cognitive Health and training can be provided for your state to become a Dementia Friends ambassador. Sure. (12:54 - 13:26) So if you just want information, is there, so is going to the Dementia Friends website the best stop, or is contacting you the best stop? I would say go to the website. You could also go to the Ohio Council for Cognitive Health website, just local, or if you put in Dementia Friends Ohio, it'll give you that connection to, or in your own state, if you're in another state, you can put Dementia Friends specific state. Minnesota was the first state that brought Dementia Friends to the United States. (13:27 - 13:58) So there's a lot of work that has been done through Minnesota, but there's also tons of information out there and people would refer each individual if they don't have it in their state. It's a huge opportunity as well if you really have a passion for dementia. Most of the states are, their Alzheimer's Association have taken on the ownership or the licensure for the program, but there's still some states out there that are not offering the program right now. (13:59 - 14:11) So there's still opportunities. Well, I have to admit, I haven't looked it up in my state. I did go to a Dementia Friends website and I think maybe it was DementiaFriends.org. I'd have to look it up again, but there is a main website. (14:13 - 14:20) Yeah, and I could look that up too, but I think it is .org. I think it is. I'll look it up. I'll look it up before we go today and put it in the chat. (14:22 - 14:45) Well, thank you. I personally just think as being an end of life doula, I haven't worked with a lot of dementia, but it is, I do think having just more information. Our course does provide some basics on it, but more information, and particularly our church is having more information. (14:45 - 15:29) A doula could do a wonderful thing by getting more information through Dementia Friends, some type of information training, whatever level they want to go on, and then incorporating that into their doula work would be absolutely fabulous. Well, so beyond working with Dementia Friends, you've stepped out in your community to establish a grassroots initiative called Life, and you have a wonderful cafe as well. You have something, is it nine? You have nine of them throughout the week or throughout the month? We have seven that meet every week. (15:29 - 15:42) Okay. Locations. So they meet for four hour increments from 10 a.m. to 2 p.m. So what our memory cafes basically look like is if someone were to come for their first time, they would definitely be greeted. (15:43 - 16:07) They would get a name tag that's one that they can wear, and they all match, and they put their own name and what they prefer to be called on their name tag. I get a kick out of it because some people have nicknames and they would like that to be what they're called, or one guy, he decided he wanted to be called Joseph, and his wife said, we've always called him Joe, but he wanted Joseph and we all call him Joseph. That's what he wrote on his name tag. (16:07 - 17:11) So it was really important for people to be able to call us out, to say our name, and us to be able to recognize them. We make a point of greeting the person with dementia first if we know they are somebody that came in that has dementia, sometimes it's hard to tell, but then we provide live music, exercise, lunch, and then an art component, and then the care partners have opportunity during exercise time to step into another room and receive education or just peer support. Sometimes we just have fun things that happen for them during that time, or it might be something a little more serious, but we have some main topics that we try to get to them every twice a year, like we talk about Medicare twice a year, we talk about elder law twice a year, there's certain topics like that, respite care, what is that? So there's certain things that we do twice a year and then there's other things we fill in, but we usually have about two speakers per month. (17:11 - 18:00) So during that whole time, they would have time together. And it's really been amazing to watch the support the caregivers build among each other because they meet every week, they really build relationships and they check on each other and they help each other out during the week, or sometimes they just vent to one another, but it just helps them get through that week. And then we've been able to keep it free, and this is our ninth year that we have not charged for our services, we have gotten grant funding, it's just been kind of miraculous, I really feel it was a God called ministry and I feel that a lot of the things that have happened have just been like, I can't even tell you how, it's just been amazing where funding came when we needed it. (18:01 - 18:32) It might've been an individual donor, it would be through grants, fundraising efforts, that type of thing, but when we've needed the funding, it's been there. And so we just keep going, and we have now this in 2024, we had 262 unduplicated people go through our program. So I think that's pretty good, I'm really impressed that we had 262 people going, we usually average about 150 every week that are in our program. (18:33 - 20:15) Okay, those were gonna be my next question, how many people attend a cafe, but it sounds like 150 a week, wow. And I would think if I were a caregiver, it would be one of the highlights of my week, and think for the person with dementia, it's like, it's the highlight of their week too. It really is, it's so amazing to me, I mean, when I have people with dementia come up and say, thank you for doing this, it just amazes me that they know it's something different and that it's something that they're just welcome and they're able to just be there no matter what, it's like, I have some people that are no longer allowed to go with their friends places because they've lost their filter and their friend won't take them anymore or something like that, it's like with us, we don't care, if you say the same thing over and over, tell us the same joke over and over or whatever, we only have to hear it, we're only there once a week with them, if they're there 24 seven, and we don't ever wanna lose sight of the fact that we're not doing it 24 seven, but we give that caregiver a little respite during that time, a lot of times a volunteer will step in and I've had caregivers say some things like, wow, for once I didn't have to do an activity with them, it's like, I could step away and go talk to somebody else because your volunteer did the activity because they can't do something on their own and you don't realize day in and day out how heavy of a burden it is for a caregiver to have to be on 24 seven with that individual, so if you haven't been through it, so yeah. (20:16 - 22:43) This wasn't something I was planning to ask you, but I'm just curious, working with dementia, is that something you felt called to because you've had like your mother or someone in your family or was it just a call the Lord put on your heart? All the Lord put on my heart, so what's really funny to me, there's in the Bible, it says, God will give you the desires of your heart, well, I guess back in my day, I never realized what that exactly meant, but I became a nurse never intending to work in hospice or long-term care, but yet the Lord did put me in those areas where I really loved and thrived in those areas and I would watch people, including hired staff struggle with working with a person with dementia and when I learned some of the techniques early on, the validation therapy was life-changing for me with Naomi File and I saw her techniques work, I tried things and they would work and I would see people respond favorably, especially someone with dementia, how they would interact or they would suddenly respond in a different way and I thought, wow, this is so powerful, so I started with my own staff working on dementia education and techniques and using Naomi File and then later on, as you know, Teepa Snow came into the picture and I was able to go through all of her training and also take that out with our staff in hospice, working with hospice patients. By last two years, I worked with Hospice of the Western Reserve for 10 years and I left at the end of 2020 to work full-time on the memory cafes but the last two years I was at Hospice of the Western Reserve, I was on the disease state committee and they said, let's do a two-year focus on dementia and I about fell out of my chair because they already knew I was doing the memory cafe, I was totally transparent the whole time I was working, sharing what I was doing with the cafes and I had my daughter and my husband running the show and basically I was able to connect them with all these resources and bring the Teepa Snow education in and it was just miraculous. So I feel like God put it on my heart and I thought for many, many years, just do it, just you know the right people, you gotta do this. (22:43 - 23:37) So I started just talking about it to everybody I could think of and it was actually a real, I mean, a home builder, he said, you need to form a board of directors and I was like, okay, so I did, I like invited about 30 people, told them what I wanted to do and the ones that stuck around became my board of directors and it went from there to applying to be a nonprofit, a church-offered space, so all of our locations are in donated spaces for churches, I get all of my lunches donated, so sometimes I sit and marvel that every week I get seven lunches for up to 30 something people donated every week, to me it's miraculous. It is miraculous and it's fishes and loaves. It is, it really is. (23:37 - 25:38) Well, you know, so I'm sure there are people on this call and as well as I just know people who will watch this and they're in the program, you're forming a nonprofit inside their community to work with end of life, whether that incorporates dementia care and more, returning to taking care of the body after death and burial is becoming a popular topic and a social model hospice home where people who don't have enough care at home can go and spend their last days in a pro-life facility, these things are gonna be more and more prevalent inside communities and they take the community to support them and so maybe as a grassroots organizer, the head of a 501c3, you could just speak a minute to this provision from the Lord, that would be amazing. So as far as forming a nonprofit, you mean? Well, just how the Lord has been faithful to you is I know that- Well, it's funny you said fishes and loaves because when we first started, we only had a couple of people that came, nobody understood what we were doing. We played our own music, we would get anybody we could to play guitar or we'd play music in general, we'd do little craft activities and we were doing the four hours right at the beginning but we were buying lunch or providing lunch, making lunch, whatever and my daughter, I had talked her into, she was a stay-at-home mom and I talked her into helping run the cafe, my husband went, he had retired early and he would go and help her out and stuff and we were paying my daughter, just paying her and I was just so surprised that we never missed it, like we never noticed that we didn't have the money there or whatever or buying the food for people, we never noticed it. (25:38 - 26:09) It wasn't that we were so wealthy or it was just that God always provided in some other way. I think just, if I could encourage anybody to do so, I would say, take that step of faith. If you feel God's calling you or tugging you toward a certain destination, just step out because I would have no, there would have been no way I would have dreamt that we would be where we are today with the way that things are going in the program and every time there's a need, He provides. (26:09 - 26:53) So for example, as we were growing up, I knew we needed to have music, live music or some other type of music, couldn't always just be playing music or coming up with different ideas that way. So I had out loud said in like January, we need to get, we need to have live music, we need to somehow have a program or something and this woman literally walks into the memory cafe one day, said she had heard about it, she lived in the town and she was a music therapist and she was a stay-at-home mom and she didn't really wanna work all the time but she'd like to occasionally provide some music. Well, she charged a fee and I knew we wanted to have her, we just had to have funding. (26:53 - 27:34) Well, another caregiver come and told me about this program called 100 Women Who Care About Lorain County and it was a fundraising effort where we actually won and we were given $10,000 to put toward music. And in the meantime, the Ohio Council for Cognitive Health had found the Music and Memory Program and they donated another $10,000 worth of equipment to us all at the same time, like within three months of saying we need to have more music or better music, live music, whatever. So within three months time, we had like $20,000 worth of funding. (27:34 - 27:59) It had nothing to do with me, nothing to do with nothing. I cannot take the credit or the glory, you know what I mean? I just marvel all the time because people are like, it's amazing what you're doing and I'm like, I'm not doing, I'm just being available, I'm stepping out, you gotta make it happen. I find that 100% encouraging because it can be scary to step out. (27:59 - 28:26) Well, I don't see the resources today so I don't know if it's wise, right? That might be something that's going through our minds. Should I do it, right? What I hear, and I know there's always stressful moments, no matter what your kind of business or enterprise you're running, but it sounds like there's some excitement ahead too because you don't know how God is going to provide and it's often bigger than we could even imagine. Yeah, yeah. (28:26 - 28:52) Yeah, I mean, when we first started, like I said, we were paying for things, but we had a small group, it wasn't that much or anything that much going on and paying my daughter and so on. And then this woman I had met years ago, she lived in Georgia, she knew what we were doing. Her sister-in-law had developed dementia and was in a memory cafe, I mean, a memory support program. (28:53 - 29:14) And she said, I wish we had something like that here that I could take her to, there's nothing to socially engage her like that and she said, but I'm gonna try to help you some, send us $10,000. Oh, I mean, I was literally shaking when I looked at it, I didn't even know. You don't know, I mean, this just happens, this stuff happens. (29:14 - 29:37) So we've gotten several grants for $50,000 now that help the cafes. One of our churches runs a thrift store and last year where they gave us enough funding to run a memory cafe for a year, plus this year they just awarded us again to keep that same cafe, it's in their church. And so now they're funding it for the second year. (29:39 - 30:00) And they're paying all of our expenses, what we asked for for the grant. I just encourage people step out and don't let other things draw you in. Like I have people saying, well, you don't, why be in the churches? Why not be in the library? Or why not be in a senior center? Because I feel like God wants us in the churches. (30:01 - 30:26) Stick to what you think where God's leading you. We've also had potential opportunity for funding through government agencies that would not allow us to freely, we sing hymns when we open, we do sing hymns periodically. We don't push anything on anybody, we're open to everybody, but they want you to focus on certain things and we've decided to not go that route. (30:26 - 30:42) And I say, just stick to your guns, do what you feel the Lord's calling you to do. Don't let other people sway that. That is really, really sound advice because it's very easy to hear voices and say, well, I don't know, I'm stressed. (30:45 - 31:22) I have one more question for you before I open it up for people to be able to turn on their cameras and their mics and ask questions. But I wanna make a comment before I move to that, you said, someone said form a board, it's a lot of work, right? And so I love what you did and I wanna encourage others because I have had that question like, how do I form a board? You told people what you were doing, had a time for people to come together and if they were interested, they came and it naturally evolved from that. And I just think that is true wisdom for everyone. (31:23 - 31:33) So thank you for sharing that. So my question is on dementia directives. I don't know if you're familiar with the term. (31:34 - 32:16) We look at advanced directives in great depth in the training program and we look at a couple of different dementia directives but also a book written by a Christian physician that talks about her wishes, were she to have dementia? And so all of this has brought up a lot of ethical conversation and there are people who say, oh my gosh, I think dementia directives are horrible and there are people who said, I don't want my children to keep me alive forever. I don't want to be a burden. So there's just so many feelings around it. (32:16 - 33:06) And so I just kind of wanted to for a few minutes not to exactly put you on the spot but if you have any wisdom around families, individuals, the conversations that are had, thinking about leaving the care wishes that they want if they were to have dementia in the future. If you just have, I don't know, thoughts on it after being in the work for so long. It's such a tough topic because even if I know what I want for myself, it doesn't mean my kids will go that route or whoever I put in charge, even if I tell them because I've had, since I've worked in hospice care, Hospice of the Western Reserve used to actually have a questionnaire to help you determine what you wanted, your last wishes type of thing. (33:06 - 33:54) And what my own conclusion was is that when I'm no longer able to speak on my own for myself and it looks like I won't be able to for the future, I'm comfortable with, give me all the hospice medications and whatever I need, help me leave this planet. And my daughter was like, well, I don't know because I would really want to pray about it and really make a decision. I said, then I'll have to put your brother in charge because it's like, you know, you want the right people and she's finally agreed that she would stick with my plan of whatever, but you do, you know, and I think families still, even when they get the wishes, I've sat with families before and said, now I'm looking at the, you know, that your living will of your mother's here and this is what she said. (33:54 - 34:24) Do you think she didn't mean that? You know, because they want to do, well, maybe we should put the tube feeding in or maybe we should, you know. And so it's just such a tough topic because no matter how prepared we think we are, the people in charge of that are still the ones they're going to listen to, that the medical people will listen to at the end because, you know, that's where the liabilities land. Right. Okay. Well, that is really helpful. All right. (34:24 - 34:44) So what we're going to do now is to turn, we're gonna, you're welcome to turn your camera and your microphone on now, if you want. I am going to open up the gallery view. So you're welcome to turn on your camera and your microphone. (34:45 - 35:08) You know, I wanted to dive a little bit deeper into the collaboration aspect of the International Fellowship Cafe podcast. And many of you are familiar with the name Convene Communities. It's where I host the training program as well as a larger community with more opportunities than just entering into the training program. (35:08 - 35:27) But you can also, you know, join the Fellowship Cafe, which is a group. And one thing I really hope to see in the future is churches forming groups and that churches will have an end of life doula in that group. It could be used for, you know, a dementia friend organization as well. (35:27 - 35:59) But it's a, Convene is a hub where real life, real people and real experiences come together. It's an online platform, a new idea in social connection. And it can impact us through being together, seeing what other communities are doing as well as, you know, just fostering, not just, you know, the education piece inside our communities, but also caring for one another. (35:59 - 36:27) There's a well-known website called Caring Bridge. People like to keep up with someone when they have an end of life diagnosis and family is sending out information about it. They wanna respond and say, how can I help? Can I bring a meal by? Or can I, you know, how can I pray for you and your family? So, Convene has a lot of ways to bring communities together through education, through social networking. (36:28 - 36:50) And, you know, that's where the training program is as well. So, using this idea of social connection within the Fellowship Cafe, here we are. So if you are wanting to ask Carole some questions, I wanna open the time for that. (36:50 - 37:04) And I will go check the chat through the live stream. And I do see there are some questions in the chat. And Michelle, you asked a couple of them that she, you jumped off for a minute. (37:04 - 37:14) I think you came back on. So definitely ask Carole to clarify on those two a little bit. And you're muted. (37:17 - 37:26) Okay, thank you, Carole. I noticed that there's a Dallas chapter. Do they have training in person? They should, yes. (37:27 - 38:02) If there is, I would contact them and just see if they have that. So you're thinking of becoming a champion then? So you would take it out or you mean for the session education? Well, I was just gonna see what kind of training was available, but also sharing it with a support group at my church for people living with dementia, their loved ones. They don't have, our church doesn't have it, but I know there's something like what you described as life in Dallas somewhere, it's close by. (38:02 - 38:18) I know they have something like that. Maybe a couple of places. The other question was, how does it work? There is a national, I was just gonna mention, there is a national memory cafe listing. (38:18 - 38:41) If you're looking for memory cafes, they're self, they're not all the same. But when you say, how does it work? Do you mean the memory cafe or do you mean how does it work the Dementia Friends? What's the difference? I noticed it was Dallas Dementia Friendly, not Dementia Friends, but it looks like it's the same thing. Yeah. (38:41 - 38:59) It probably is. So there is a Dementia Friendly movement, which is it's part of the same. The difference is Dementia Friends is an individual focus of getting individuals to make a difference where Dementia Friendly is to get the communities to make a difference. (38:59 - 39:22) So for example, first responders might agree to have everyone trained as a Dementia Friend and then now as an organization, they're making a difference. So if you get so many organizations involved, you can become a Dementia Friendly community. Here in Northeastern Illinois, one of our Lorain County cities, they did that. (39:22 - 40:05) So they had different places agree to make changes and it could be a grocery store might say they would offer a personal shop or a speedy checkout or something like that, that they're gonna do differently. They can be part of that Dementia Friendly community change. And if I shared this with people, some loved ones who have family with dementia, and maybe I just missed this in the presentation, where would they go and how do they get involved? They can just online, is it an online? There is an online option of education for the Dementia Friends Movement. (40:05 - 40:29) So I would look at Dementia Friends and say Dementia Friends, Texas, Dementia Friends, whatever state you're in, look at that and start there with finding out what's available. And then there are online educational options. But if you become a champion, then you would be someone that would share that information in the communities, you can go anywhere. (40:29 - 40:42) You can go to libraries, long-term care facilities. Like I said, I do education for bus drivers. I've done a lot of things in churches and there's all types of supports available. (40:43 - 41:14) What does being a champion entail? What kind of training? It's about a two hour training that's basically things that you need to know as far as you get a guide that walks you through anything you could possibly think of to say for your session. And the one reason you don't have to be an expert is because you also get a list of resources in your community. So for example, if someone started saying, well, my husband had Lewy bodies and I don't understand what's different about that than Parkinson's. (41:14 - 41:29) And you could say, do you mind for the sake of time if you talk to me after, and then you give them a resource list to call the Lewy Bodies Association or the Parkinson's. You aren't the one giving the advice, you're just giving them connections. Okay, okay. (41:29 - 41:47) Yeah, the training seemed really short, like small. It is, it's not really in depth, but now here in Ohio, we have monthly meetings too that are virtual. So we can go on, you don't have to participate in them, but you can find out if things are changing or something else is going on. (41:48 - 42:02) They just have virtual meetings available. People share things they're doing in their own area, but that's in Ohio. Now, Texas might have a different lead or they might be more advanced than Ohio is. (42:02 - 42:17) I don't know state to state how they're operating, but there's the same fundamental structure as far as what the Dementia Friends Session offers. Okay, I'll check it out. Terry, you have a question. (42:18 - 42:56) I was wondering if at a memory cafe, if a caregiver, if a person with dementia hasn't admitted to that and won't be clinically tested, but they definitely have it, if the caregiver would be allowed to come to the support part of the meeting anyway? Yes, so we do, we allow the care partners to come. We do have two of our memory cafes actually have a monthly Alzheimer's led support group. And we have a couple of caregivers that come just for the support group. (42:57 - 43:12) Their loved one, their dementia's advanced to where they're not able to leave the home. And so they come for that reason. And then I also have some of our caregivers after their loved one passes away, they still wanna come because this is their friends now. (43:12 - 43:29) They've built that relationship with the other people and we always keep that open. They'll usually be months afterward and then they might kind of start drifting or they just meet outside of the cafe. We don't make anyone prove they have dementia. (43:30 - 43:45) We just have them come in as a caregiver, a care partner and a participant. That's how we identify them. So if this person, I just have a particular friend, so it's her sister. (43:45 - 44:17) And so her sister, I've mentioned something like a memory cafe that maybe she'd like to try, but she's concerned that if she tried to get her sister to go, that then it'd kind of be, so to speak, in her sister's face that yes, you have an issue that her sister isn't willing to admit or maybe she's even at the point where she can't admit it anymore with her memory issues. Yeah, it's funny. So all memory cafes are not alike. (44:18 - 44:30) So they're all, it depends on how they run. Like our organization is the only one I know that runs every week for four hours in seven locations. I don't know of anybody offering that every week. (44:30 - 44:40) Most will meet for an hour and a half to two hours once or twice a month. What I tell people is to invite their person. Let's go see what they're doing over at the church. (44:40 - 44:49) I know they're having a lunch. Let's at least stay and have lunch. And I tell them to try to get them to come back three to four times consecutively. (44:49 - 45:04) It's usually around the third or fourth time they realize we're familiar, what we're doing is fun. They don't have to stay if they want to leave during that time. So we do make it real flexible. (45:04 - 45:16) We don't make people, they don't have to arrive at 10 and they don't have to leave at two. They can come late, they can come early. But we say try to get them, let them know there's gonna be a lunch and maybe at least they'll stay and have lunch. (45:17 - 46:02) And it's amazing to me to watch people that are nervous or have anxiety or they're in their own denial or paranoid or whatever, how all of a sudden we're their friend and we're okay. And this is a good place to be. Where would you point someone to as a caregiver to go and find information as far as like just how to talk to the person with dementia that's either maybe repeating themselves or maybe things like having kind of illusions or is there a place to go online where they can find information that you point them to? My favorite is through the validation therapy to look up validation therapy. (46:02 - 46:17) That's what Naomi Fowl started. She has now passed away, but there's still a validation therapy institute and there's all kinds of tips. And Tipa Snow is another wonderful resource of people that offer even videos. (46:17 - 46:44) You can go on YouTube and watch free videos of how to interact and stuff, but not everyone does a great job with those videos. You can get people sometimes that you're like, I don't think that's what I would do. So I would say those two main sources, validation therapy institute and Tipa Snow would be my two main ones, but they can always call the Alzheimer's Association in their community and get resources as well. (46:45 - 46:59) They should be able to point them in the right direction and support group. Thank you. All right, I looked at the Alzheimer's Association for training, but it was like weeks, like 13 weeks or something really intense. (47:00 - 47:23) I don't know how much of that's necessary, but I guess it's to facilitate a group. Right, yeah. So I used to facilitate groups and there is a training that you can do, like you said, that's more lengthy through the Alzheimer's Association, but just for general support, like where to, you know, I have this behavior happening. (47:23 - 47:33) I'm just wanting to know who I could talk to or something interaction that I'm not sure how to handle. My mom's real paranoid right now. I don't know how to talk to her. (47:33 - 47:41) How can I find out more? They can refer you to address specific concerns. Okay. That's really good. (47:41 - 48:05) I would think there are many families experiencing dementia of a loved one that feel very under supported and don't know where to go. And I actually wouldn't know until now to tell them that they could call the Alzheimer's Organization, like a local organization. Well, I've really learned a lot today. (48:05 - 48:42) And I just like to say to you at end of life, you know, just like all throughout the course, but one of the things to always remember if I could leave you with any tip at end of life is just remember that feelings are the most important thing for a person with dementia, how you make them feel. So if you're with somebody at end of life, even if you think they don't understand, speaking kindly to them, singing songs that they like, saying, you know, prayers or something that's familiar to them, things that are dear and near to their heart are gonna still be warm, fuzzy things for them. They're still gonna be meaningful. (48:43 - 49:01) My father-in-law, he did end up having some mild dementia, but one thing I know, he had a blanket and he would look for Whitey on his blanket. Whitey was the tag and he liked to have the tag on his left side in the corner at the top. And just knowing that, it brought comfort to him. (49:01 - 49:18) I would say, Whitey's right here. And I would hand him, put the blanket on him and he would feel it and he would smile. It was just knowing those little things, you're gonna make such a difference in the life of somebody with dementia is just to be able to connect in areas that are meaningful to them. (49:20 - 49:41) There's- Yeah, you're so right. I worked with them for a little bit and I'd find their favorite music and one gal would not do anything until we played the Bee Gees, Staying Alive. Then she got up and I mean, we would dance and once it was over, she'd sit down, but we would do it like three or four times in a row. (49:42 - 49:51) And she would see me and smile. She didn't remember, she didn't know my name, but she just knew that she felt good. There was something good coming. (49:52 - 50:05) And I've seen it over and over and over. I worked in long-term care for many years and I would see how someone would respond when they would see certain people. And I always made positive connections with people. (50:05 - 50:25) Even if I was super busy, if they reached out or I saw them looking, I would make a connection of some sort. Notice their hands are warm, notice their hands are cold, something I would make a comment about them or to them and touch base. And then sometimes I would say really busy, but I wanted to stop and say hi. (50:26 - 50:42) Just let them know they were important. And those little touch bases are gonna take you so far, so far with someone with memory loss or dementia, even if they don't remember the interaction, they remember those feelings. Right, I'm glad you said that. (50:42 - 50:49) That's so important. Not too far from where I live. I live in Charlottesville, Virginia. (50:49 - 51:17) So over in Richmond, which is about an hour away, there's a facility that's doing something different. And they are, I mean, usually when we think of like a memory care facility, we think of everyone in their bed or in their wheelchair, in their recliner for the day. Maybe they get out and come have a meal, but their lives are pretty much, it looks sort of like there's not much to enjoy there with that. (51:17 - 51:58) And so what this facility in Richmond is doing is that they've built the facility around a more interactive lifestyle. People with dementia regress, they don't have the abilities that people that don't have dementia have, but they've made their life still resemble some of the things that you may do in life without dementia. And I just think that maybe even looking in your community for more different options than just saying, oh, we're just gonna pick this memory care facility because they take care of people who have dementia. (51:59 - 52:11) Might be a good place to start as well. I don't know if you're familiar with any of those, Carole. I'd have to do a little bit more research and get the link of this place. (52:11 - 52:33) But I think, you know, they have people that probably they have, you know, less severe forms of dementia, but they even have work that they do at the facility. So they really feel like they're engaging in life. I am familiar with different programs and I know there's a lot of great things that people are doing. (52:33 - 52:57) My ultimate dream would be that we could keep people with dementia in our communities and they wouldn't have to go into an institution or be separated from everybody they love. But I understand that sometimes, you know, it's hard to keep people safe sometimes. And sometimes that might be the only alternative, but I just wish we could do a better job of supporting those people that wanna be the good successful caregivers at home. (52:58 - 53:18) I really, I just think there's so much opportunity to support families and help them care for their loved one throughout the journey. And even doing what you're doing, I mean, having the death doula type focus, it's another important part of that staying home. You know, it really is. (53:18 - 53:28) I'm currently working for a family that the mother's 98 and there's no dementia present. She's really, really sharp. Her body is just giving out. (53:28 - 53:47) She's finally been referred to hospice, but it's been a lot for the daughter. And I wanna say, you know, 10 years of caregiving for her mother and then caregiving for her father before that. And, you know, over, you know, maybe 15 years, a lot of life has gone on. (53:47 - 53:58) Her brother died, you know, it was an accident. I mean, so much happens beyond just continuing to be a caregiver. And she's really, really exhausted. (53:58 - 54:12) And one of the things that's been hardest for her is there's no community support. She says that, you know, she basically doesn't really go to church anymore because they don't know how to help her. And that was where she wanted to get the help. (54:12 - 54:31) And so we really do need to do something different inside our churches and support families in a new way, so. I agree. Yes, well, it's been, this has been great. (54:31 - 54:55) Our first podcast, we did it. And Rosa, do you have any questions? And Lorraine, I see you just popped on. We start at one, so it's still a little bit, okay? Sorry, do you have any thoughts, Rosa, questions to close us out? No, not really. (54:55 - 55:02) Just thank you so much. It's very informative. No, I really don't have any questions. (55:02 - 55:14) I think you gave a lot of information. And thank you so much. I'm learning so much as I go, so thank you. (55:14 - 55:37) And it is very, very important, like you say, Laurel, that we encourage our church, our communities for us to know more about this and engage us in this. So yeah, thank you so much. That's all I have to say for right now. (55:38 - 55:42) Yeah. Yes, thank you. Let me close this in prayer. (55:42 - 55:52) I'm gonna pray for our communities as well. Dear Heavenly Father, I thank you for putting us together today. I thank you for technology. (55:52 - 56:20) I thank you that I was able to successfully bring together a community online and provide information. So we just thank you so much for Carole and her call, the call that you've placed on her heart and the success that you've given her. And we just pray for everyone here, Lord, you've called them to something within their communities to support one another. (56:20 - 56:37) So I just pray for us as educators and leaders and caregivers that you will help us make something new in our communities. It's really gonna impact the lives of those around us. So we just thank you for all that you've given us in Jesus Christ. (56:37 - 56:58) We thank you for giving us strength, Lord, when we do not think we have the resources to continue. So we just pray for everyone's ministry, Lord, that you will fill them with hope and deliver on your promise that when we come to you with our needs, Lord, that you will provide. In Jesus' name, amen. (56:59 - 57:02) Amen. Thank you, Laurel. Thank you.