This is the Whole Care Network. Music Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you ever heard of a virtual Dementia Tour? Well, now's your chance. Today I'm talking with P.K. Bevel, founder of the global nonprofit Second Wind Dreams. And she's also the inventor of the virtual Dementia Tour. We're going to talk today about what a virtual Dementia Tour is and what you can learn from what. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music If you're following along with the Navigating Dementia Caregiving Roadmap, this is part of Step 7. You can find the Navigating Dementia Caregiving Roadmap as an interactive page on our website. Go to thecarediversjourney.org, choose Caregiving Roadmap, click on it, and then it gives you the 20 steps of the roadmap. You can click on any number and it tells you the detailed recommendations behind that step. Steps 1 through 6 are really creating your foundation right after a diagnosis. And still early in your process, we recommend you go through Step 7 through 10. So Step 7 is where we recommend you start educating yourself. And this is where the virtual Dementia Tour lives. So let's get started. PK, we are so excited that you're here with us today. Thank you, thank you. And thrilled to be educating our listeners about virtual Dementia Tours. Tell us a little bit more about yourself and virtual Dementia Tours. Thanks Nancy. First off, I want to thank you for including the virtual Dementia Tour in the handbook and the caregiver's journey. I think it's essential that we understand what a person with dementia is living with in order to really do a good job of caring for them. So applause to you and your team for putting together the whole handbook. It's incredible. And I just want to want to be sure that your listeners and your viewers know that this is an essential thing for you to have available. Nancy and her team have just done an incredible job. So please, please take advantage of the offerings that they're giving you. I created the virtual Dementia Tour because I got frustrated with the fact that no matter how much training I did in long-term care for the caregivers there, I was not able to make the connection between what a person with dementia is living with and what they are seeing happening. So they were jumping to conclusions about why a person with dementia acts out a little bit, why they may hit, scratch, bite, do things like that. But in fact, we all know now that it's the brain, it's the disease, not the person that this is happening with. So I wanted to figure out a way that I could simulate what it might be like to have dementia. So by doing that, I studied how the brain dies and then from that I looked at what the behavioral output of that is and then developed the components and then the training. And you know, it really is life-changing. You hear that consistently from people who are family members, caregivers, for someone living with dementia. What's so critical to our interaction with them is empathy and dignity. And the Virtual Dementia Tour really impresses both of those on you in such a big way. So I'm a huge fan, Sue and I both are, of Virtual Dementia Tour and to that point, we have a very, very limited number of resources in the Navigating Dementia Caregiving Roadmap. We try to give you just the basics and we consider this one of the basics in terms of educating yourself in how you're going to support your loved one. So let's go to tip one, which is to learn what happens in a Virtual Dementia Tour. PK, back to you. Oh, I'm so glad you asked Nancy because it's, I think people have an assumption, you know, that this is something that's going to diagnose them with dementia or something that's going to rattle them so badly that they won't be able to do a good job caregiving. And in fact, this is the opposite. It's not to diagnose anyone. In fact, it is designed to help you feel and sense and deal with some of the realities that a person with dementia lives with. So what happens is that I develop some components that earphones to help simulate the kind of white noise that they listen to and how difficult it is for them to attend to different things. The gloves that help you understand what it is like not to be able to touch and see and feel things very well. And also some glasses that limits the peripheral vision of a person so that they see what it's like not to be able to see much to the left or the right. I simulate pain also in the virtual dementia tour by having some shoe inserts that allow the person experiencing the tour to see what it's like to be in pain and not be able to do anything about it. So in addition to that, I had to design a way to assess whether or not the person in the virtual dementia tour was actually feeling what it's like to have dementia. So there's a pre-test and there's the experience room where they're given tasks to do and they're observed in the room and tabulated. And then there's a post to see if there was a change in their attitude about dementia and there always is. 97% of the people going through the virtual dementia tour state that they will treat dementia differently after the tour. It's a pretty high number because I think most of us it's hard for us to identify with a person with dementia. It's a tough one and bless their hearts. They can't tell us. So then after that there is a comprehensive debrief because it's important that the person that goes through the tour have the ability to understand what exactly were we were we tipping on during the tour. How do we take those tips and turn those into actual care? And that's pretty much some in substance of the tour. And you know you hear consistently from people like I said earlier, they're just in shock and they're amazed and they get it. Or at least they get it as best we can, not being the person living with dementia. Some of the takeaways I think are also things that are relative to your environment as well like the lighting and you know sort of the overwhelm of too much information. Talk us through just a few of those little things as well. Sure. So in the experience room, I wanted to make sure that I simulated how the brain understands lighting and how it understands the way items are positioned in a room. So the lighting is relatively dim because people with older adults in general need about three times more light to see. Even if they've had cataract surgery as I have, which helped a lot at the same time, according to studies, your vision continually gets dim. The rods and cones become damaged. So we simulate that loss of ability to see well in an environment. And in the room itself, we have wandering areas so that you actually get to see the participants wander just like a person with dementia. We see them struggling with tasks. We see them unable to understand what the tasks were that were given to them. And the big thing with that, that I want your listeners and viewers to know is that when we give instructions to a person with dementia, even though they may be standing or sitting right there and looking us right in the eye, does not at all mean that they've understood what we're asking them to do. So at the beginning of the tour, we set the stage for that by giving instructions and then moving away. And the person in the experience has difficulty understanding spoken word. So it's pretty graphic that part. We have to be very careful about that with people with dementia. Yeah. You know, one of the other things I think that we all don't tend to understand, but you get it after the virtual dementia tour is a lot of the pacing and touching everything. Yeah. Isn't that just amazing? When our senses are dimmed and with a person with dementia, obviously the senses are dimmed. They're not hearing well. And what they're hearing is misconstrued and combobulated so that they begin to lean on other senses. And so this is why when we see a person with dementia doing that padding and picking up things and moving them from place to place, while it can be frustrating for the caregiver at the same time, they're actually doing something. And here's my watchword. Please remember, as long as a person with dementia is not a danger to themselves or others, let them be. I know it can be frustrating. I have lived with a father who for four years who had vascular dementia and I know, I understand, I get it. But at the same time, he was doing things that were frustrating and I had to let that go. So just keep that in mind as you provide care. And I think that that also is a huge result of the empathy that would get from a virtual dementia tour is a better understanding of why they're doing some of the things they're doing. And then key, not everybody could do this, but key is how do we take some of what we learned and apply it at home? That's our tip to like, let go and let them do as long as it's not hurting anybody, let it go. So what can we apply at home that we learn from the virtual dementia tour? Oh, so many things. And I tell you, Nancy, it's one of those things that when you go through the virtual dementia tour, and I hope each and every one of you has an opportunity to do that. Once you go through the tour, you will begin making your own connections in your own environment. Now, the debrief will help you make those connections. But just to give you an idea of a few things is frequently we make assumptions about what a person with dementia can and can't do. And once you take the tour, you come away and go, oh, well, no wonder she's been doing that. Or no wonder this has been happening. No wonder she keeps asking over and over again, when do we eat, when do we eat, when do we eat? That's not only a memory problem, but it's also a need for reinforcement and a need for attention. So that those kinds of things we ask people during the tour, not to ask any questions during the tour. And yet most people constantly at what am I supposed to do next? What am I just exactly like a person with dementia that sensory overload is happening? Also, remember, they're not going to think of things that they need to do. That's not going to happen. For instance, during the tour, I've been doing this obviously since I created it in 2001 for my dissertation. And I can tell you that I can probably count, and I think it's about five million people worldwide have been through the tour now. I can tell you, I can probably count on one hand the number of times I've seen a person go into the VDT and actually flip on the lights. Think about it. So what does that tell us? That tells us that a person with dementia in a darkened room, even though they can't see very well, isn't going to think to flip on the lights. If it's too hot or too cold, they're not going to think to grab a sweater or to say something about it. This is where a really good caregiver is empathic enough to realize, oh goodness, I need to look at this from their perspective, and I need to take care of what needs to be taken care of. So often they like for things to be very visual. So during the tour, we actually create abstract tasks so that you have to think through what it is you're going to do next. And what we learned during the tour is with all that sensory overload going on, the participants can't think through an abstract task. For instance, if we say to a person with dementia, let's get you ready to go to the doctor. And they still sit there when you come back 15 minutes later. It's not that they're being obstinate and it's not even that they don't want to go to the doctor. They don't understand what the next steps are. So we learned very quickly during the tour and obviously in my work with dementia since 1983, I found that we have to break things down into very small tasks and even better caregivers if we can give them a verbal and a visual cue at the same time. In other words, I have two shirts here. Which one do you want to wear? This one or this one? Did you notice something there? I gave them a choice. Give them choices as often as possible because when we give them choices, we allow them to stay in it. If we just do everything for them, caregivers, what we end up with is someone who becomes more withdrawn and more out of the actual milieu that they're in. And we don't want that because that then contributes to additional confusion. I think the whole concept of building the empathy and then trying to obviously support their dignity and then getting home and thinking about what you learned and applying it to your own home environment or whatever environment your loved one's in. If it's not at home, if it's a different environment. But checking ourselves and making sure that we're applying what we learned. So that's all part of the process. And at Second Wind, where we house the virtual dementia tour, we're available all the time for caregivers to contact us and ask any questions that they have. It's free. It's a free service. We're perfectly happy to do that. In fact, it's one of my favorite things to do is to hear from families who have a lot of questions. And I have a number of them right now that are just, it's just fascinating. Oh, that's wonderful. Tell us, that's tip three. Tell us how to find a virtual dementia tour near us. We could be anywhere in the world. You could be. And so the virtual dementia tour is offered pretty regularly or very regularly throughout the U.S. Your best bet, if you're in an area and you want to see or go through a virtual dementia tour, go to our website, SecondWin.org and go to questions and put in where can I live in Idaho and I'd like to know where the virtual dementia tour is near me. And we'll be able to get that information to you. You can also go to our website under events and you'll be able to see where the virtual dementia tour is. But it may. So what happens is our clinicians and we have thousands of them worldwide to provide the virtual dementia tour. Sometimes don't let us know when they're doing the VDT. So if you're in Idaho and you give us a give us an email, what we're going to do is we're going to contact our contacts in Idaho and find out for you where it's going to be and then let you know. So we hope to have as many people covered as we can. Of course, if you're living in the Metro Atlanta area, we offer it at our home office in Roswell. And we're happy to make that available even at Hawk. So if there's a group, a family group that wants to go through the VDT, we'll do everything we can to set one up for you. Also, there are places around Atlanta that offer it on a regular basis too. So just keep in contact with us and we're happy to help in any way. And I know you work with your partners also to set up VDT tours for lots of different reasons. Some are for family caregivers. Some might be for people who are in government services where they're dealing with or potentially dealing with people who are living with dementia like in the emergency room or the police department. So point is, if you're someone listening and you are part of an organization that you think we need to have one of these, you can have one at your organization. You just need to contact the second one, dreams people and they'll tell you who the local partner is that can help you set one up. That's right. And we have specific tours for those people in law enforcement, first responders. We have a specific tour for them retail. We have a specific tour for them. Restaurants particularly. We have one TSA. We have one. They're all different types of VDTs that we can provide specifically to an organization. So yes, we just need to know what you need and we will do what we can to get it to you. It's that important to me because I don't think any of us should be trying to assist a person with dementia after without first walking in their shoes. So I think attending physicians, they all need to go through it. Anyone who is around people with dementia and those who aren't because let's face it. We're at an epidemic in the United States with dementia. All right. So I think we got the basic good information around what is a virtual dementia tour, some ideas on how to apply it at home, some good information about how to find one. I want to make sure that I give you just a minute because Second Wind Dreams does obviously extremely well done for virtual dementia tour, but you do do a couple of other things. So you want to take a minute and tell people some other things that you do? Oh, of course I do. I founded Second Wind in 1997. The original reason I founded it was to make dreams come true for people in nursing homes because I had been serving them for decades and I would find out that they were asking for such simple things when I would ask the question, finish the sentence with the way you feel. I wish. And they would say, I wish I could go to the graveside of my wife again. I wish I could have a steak dinner. I wish I could see my son. I wish I had a new belt. And the things were just incredible, Nancy. So it bugged me for years. Why can't we be doing that? And what's interesting is a dream for them is totally different than a dream for you and me. You know, to dream for a cup holder for a wheelchair is just incredible. And yet once we made that dream come true, he started coming out of his room. He became president of the resident council and all of those things. Dreams are so important. And as we grow older and are more compromised, we tend to forget those dreams or put them aside. And yet they're fascinating. So that was the original reason that I created the nonprofit Second Wind Dreams. But I had a tough time getting funding for it because let's face it, most people don't think that it's worth anything to donate money to a cause where you are making dreams come true for a person who is, you know, obviously in their final stage of life. So I pitched, I tried, I, you know, sent everything that I could, went to every meeting, stood on my head and spit nickels. I did everything I could and the money just wasn't coming in and God was working on it though. I just wasn't getting paying close attention. And so during that wilderness time, that's when I created the virtual dementia tour. So once I realized that the virtual dementia tour, even after my pilots were over and after it was published, it was getting requested to come back and do it again. And that's another important thing about the virtual dementia tour. It's not a one and done. I recommend that you go through the VDT at least once a year. You learn new things every single time. And our studies show that that's consistent across the board. So once, once I created the virtual dementia tour, I made the decision along with my husband to donate it to Second Wind so that all of the proceeds from the virtual dementia tour go to continue to make dreams come true. So while we have the virtual dementia tour, we also have a number of other programs associated with the VDT. The most recent is our inclusive virtual dementia tour where you go through the tour and then after you do the traditional tour, then we convert it to what we call the inclusive tour where you actually get shown what good caregiving looks like. So you actually get to feel it. We also, three years ago, I launched what's called empathic transitions. And I realized that here we are almost 30 years old as a company and we work with people from the moment of diagnosis and their families, but we had nothing for end of life care. So I became a certified death doula and I created a dementia death doula program so that we can learn how to create the best possible death possible for the person with dementia and their families. And one thing that I wanted to mention too about the dreams is no longer just for nursing homes. We now make dreams come true for home health, hospice, assisted living, and group homes for people, older adults. So we've now broadened that pretty wide, but you do have to be involved in an elder care setting. Amazing. I love the definition of a non-profit. This is what it should be right here. Giving back and figuring out how to help what you do with the virtual dementia tour and the doula, but then leveraging that to actually make people's lives happier. Yeah. So let's summarize. Thank you so much, PK, for spending the time with us today helping us get educated and make sure that we actually know what we're doing when we get home and care for our loved ones with dementia. We shared three tips. Tip one was to learn what happens in a virtual dementia tour. Thank you. I think we did that. Tip two, apply what you learn at home. Tip three, how to find a virtual dementia tour near you. Now, if you have tips on taking a virtual dementia tour and applying that information at home, please share them on our Facebook page or our Instagram page. The links are in the podcast description. For every podcast, there's a matching blog. So take the number of this podcast, and then you can go out to thecarediversjourney.org, go to the blog page, find the blog that has the exact same number, and it's effectively the notes we've taken for you. It's a written version of this podcast, so we've taken the notes for you. Back to the Navigating Dementia Caregiving Roadmap. Remember, we're talking here about step seven, so you can find that both as a downloadable digital guide on our website, as well as an interactive page on our website under thecarediversjourney.org Caregiving Roadmap. We really appreciate you joining us today. If you like this podcast, please follow it, subscribe to it, and share it with others. We're all on this journey together.
