Improving Communication

with Melissa Smith-Wilkinson &
Jytte Fogh Lokvig
A chat with Jytte Fogh Lokvig, Ph.D. who began the Alzheimer's Cafes here in the US - where there are now more than 500 across the US. She's is also the Author or 6 books! 
Visit her site: www.AlzheiemrsAtoZ.com
Certified Alzheimer's and Dementia Educator
Author:
Alzheimer's A to Z, Successful Caregiving
Alzheimer's A to Z, A Quick Reference Guide
The Alzheimer's Creativity Project 2
The Alzheimer's and Dementia Handbook

Melissa Smith

Welcome to the Caregiver Wellness podcast. I'm so glad that you took time to join us today and we have an incredible guest, Jytte, who is one of or renowned for having founded the Alzheimer's Cafes here in the United States about 13 years ago, so if you've heard of the Alzheimer's Cafe or if you haven't, I would quickly Google that and find one that's nearby you because it's really unique and we chat just a little bit about why and how they're different from support groups. And we also dive into some of her really top tips in terms of how to communicate with the person who's living with dementia that you're caring for and how important that communication is, which gives a sense of dignity and a sense of really a sense of purpose. And it's just a fantastic and fun conversation, which I know that you will enjoy today. I am so glad that you showed up and you will really, I think, gleam a lot of tidbits just from our brief talk together today. So thanks for joining us.

 

Melissa Smith

Welcome Jytte to I am so happy that you are here with us today for not only our Facebook live, but this will be put on later for our Caregiver Wellness podcast. And it's a real honor to actually, this is the first time that we are even meeting, which is exciting to me. So I'm really thrilled that you're you're taking an opportunity today and today. So if you are listening to this way after the elections, we don't know yet, so the future folks that are that are listening to this is all are all in the know and are de-stressing at the moment. But we're right in the middle of it. So before we even begin and before I introduce our beautiful speaker today, we're just going to arrive together and take a breath together. So my suggestion is that perhaps if your feet are not on the floor to just kind of put this on the floor and we'll just take two simple breaths together. So take a breath in through the nose so it filters the air for you and you can exhale through the mouth or the nose. Just exhale all the way out. And we'll do that one more time. Notice how you feel breathing in through the nose. And just letting that go, maybe feeling what you're sitting on. I already feel much more grounded, so I am, again, truly honored today to have our guest and I asked her to introduce herself and she even suggested opening up how she would normally open up was not with breathing, but with a joke.

Jytte Lokvig

Don't worry, I'm Dr. Jytte Lokvig. I have a doctorate in the management of Alzheimer's and dementia caregiving.

 

Melissa Smith

I love it anyway, I had to tell her we were chatting, I was like, you can simplify it if you want. That's probably the most simple I've ever heard.

 

Jytte Lokvig

Right. Right. It took me a year to find a university that would work with me on that one.

 

Melissa Smith

Wow.

Jytte Lokvig

You know, my background is in education, psych and art, not necessarily in that order. And, you know, at my age, I wasn't going to start all over again trying to get a medical degree or another psych degree in order to do a Ph.D. in those fields. And I realized that what I do encompasses so much anyway. It doesn't fit in any one of those boxes. So like I said, it took a year of talking to universities before I finally found one would work with me. And they did. So that's my official title. I don't use that very often because it's a little cumbersome. Anyway, I have worked with people with dementia for over twenty-five years now and their families and caregivers. And it was one of those things that I just kind of fell into it. It just happened, and when it happened, I said, this is what I need to do. It was like a culmination of all the stuff that done before. I made my living as an artist for a long time, I owned several businesses. A lot of design all this stuff. And I was a teacher for seven years. And my method as a teacher was a Montessori philosophy. So all of a sudden, I'm here with a group of people with dementia and I found that what I used to do was students. Worked perfectly with people with dementia because Montessori is based on you start with a person. What is he or she interested in, who are they? What can you add to their lives not taking away or controlling? What can you add?

 

Melissa Smith

I love that and one thing that I have appreciated that I have heard you say, and it's also something you subscribe to, it's it's the person living with dementia rather than. Dementia patient or whatever, all of those labels that we can give to it. I feel like that is. It gives back a sense of dignity.

 

Jytte Lokvig

I totally agree with you, and that's a real it's a real sore spot for me when people abuse the language because it does affect people. I mean, if you're on the receiving end and you are living with dementia and somebody says, oh, that dementia person over there. I know I hurt him more with Alzheimer's. The Alzheimer's person, and you are not your disease. You're living with something, you're living with a sore hip or diabetes or liver problems, but you are not the disease and the same thing has to be true for the people in memory impairment. And it makes a big difference because it makes us focus on the person again.

Melissa Smith

Yeah, and this is really good. Yeah, know, this is a really good segue because I know you wanted to talk a little bit about how caregiving is a two way street. And when I work with caregivers, what I always talk about in terms of themselves, is because people will say I am stressed out. Well, OK, that's an experience you are having. But you are not stressed. You are not this whatever it is that you're projecting, it's happening, you know, through you or to you. But that's not who you are. And so I'd love for you to speak a little bit about your analogy of caregiving being a two-way street.

 

Jytte Lokvig

Just like I said, with you know, with the Montessori, will you start with a person, the same thing is true when we're one on one caregiver and the person we're caring for. You know, if we constantly focus on what's wrong with them, not only are they going to be stressed, they will be stressed. And we are, too, you know, and it's our choice to go the other way. So. When I work with families or caregivers, I help them again, focus on what we can do, that's positive. What helps that person in this moment and. Right now, many of many caregivers because of Covid are probably one on one at home, basically being constant quarantine. And that is incredibly hard on anybody, so some of the tips I give people is that you need to find things for yourself, but also even before that, for the person you're caring for, that they enjoy doing that they are able to do that is a little bit challenging. But not too challenging, and it could be anything from I use fiddle boxes, a lot of fetal boxes is let me see if I can find a picture in here. A fiddle box is just a box with stuff like a variety of stuff.

 

Melissa Smith

And that's one of your books. Yeah?

Jytte Lokvig

Yeah, yeah, this is my latest book. And actually, I recommend that people get this because there's a lot of great information in there. All creativity on language, words matter. Anyway, I just the first fiddle box I made, I just walked around the house and picked up stuff. And then I was horrified to see how much stuff was just lying around my house. It was some of it I didn't even know it was, you know, so that's kind of what fiddle boxes are.

 

Melissa Smith

So it would be things that are textural.

 

Jytte Lokvig

Exactly. And if you can't see this, this has a different sections in there. And I use it, try to mix them so there will be something hard and something soft. But it can be anything. It can be just a tray. For instance, at one point we used a tray. I wouldn't trade with wooden kitchen tools that don't hurt people. But, you know, they're interesting and whatever. That's that's what the boxes it's what what whatever box. The important thing is that when we present it to somebody, we don't plop it down and say, OK, here's something for you to look at. That's very demeaning, you know. So instead, what I do is I ask the person for help. And I want to make sure that the box looks really messy, that's a whole point of it is going to look messy and I can honestly say, look at this mess. I don't even know what half of this is, which is true, and could you help me? Do you have do you have a few minutes? Now, there are a couple of things in there. First of all, I'm asking for help, which is very important. Because here's a person that is always being helped by other people. And it feels good to help someone, right? So you know that that's point one and the other one is. I just lost my train of thought.

Melissa Smith

It was going to say when, when when you ask when you're asking someone for help, yeah, there's a sense of purpose in that. Exactly. And they have lost all purpose. And what like what is my purpose?

 

Jytte Lokvig

And actually, in general, cowritten not just whenever we are caring for somebody else, we need to help them. Find a purpose. Find purpose of this, not just one, but find purposes. Feel like you are contributing to something we all need that there are like with the kitchen utensils. You know, these you couldn't really see the pictures too small, but they all wooden utensils, so you can't hurt yourself with them, but they also have something to do with the kitchen and cooking. So, for instance, if you're let's say you're taking care of your mom and she's driving you nuts and you have to cook, you have no choice. You've got to get in that kitchen and cook and you need her close by so you can see what's going on. Right. Her tray of utensils can be really helpful and you supplement it with other things, that kitchen-related stuff that once again can't harm her. Right. But they have to be real. And this is crucial. It has to feel real to the person. That you really that she really is helping. So in a situation like that, for instance, I've had. Some caregivers make up with the person they care for, make up personal cookbook's like that, assemblages of recipes if they went to cooking. You know, even if they never use them, it doesn't matter, but they're beautiful pictures to look at and something to live through is something that they created or you created with them. And it feels very purposeful. And you can actually honestly get into a discussion about food. You don't have to follow any of the advice that she gives you, but listen to her. And take it seriously. And you might want to talk about your memories or if it's just your mom again, you know, like you, mom, you used to make the best of whatever, you know, and I can't remember how to do it. You remember any of it at. So even if you never follow through, just doing that alone gives her a feeling that she is that you were equals in that moment, you're working on something together.

 

Melissa Smith

You know, it's so powerful. I've been having I study a lot in terms of the senses of the body and and and research on how that affects the brain and even olfactory smell. So smells that from the kitchen. And, you know, if you were slicing something and noticing that smell, those can trigger some memories and connection even if they can't vocalize it.

Jytte Lokvig

What you can do for them.

 

Melissa Smith

Yeah.

 

Jytte Lokvig

You know, because if it's somebody that you've known all your life, like your mom or your dad, you can do that vocalizing for them, but not never in a demeaning way. And that's tricky because it's very hard not to use baby talk sometimes when we're caregivers.

 

Melissa Smith

So, you know, this is a really big part of what you do. It's how you communicate. And I wonder if there is. Something really simple that caregivers and really anyone listening because communication is for everyone, right? So actually there is right there. Is there one simple suggestion that you can make today that we could implement? Yeah. And what would that be?

Jytte Lokvig

It's actually a list that is a simple list, it says, listen. Because we're in a habit of not listening. So even when a person is non-verbal, we still need to listen because they're trying to tell us something sometimes listening with your eyes. Like, what is her body language telling you right now? But pay attention, in other words, ad and don't dismiss people, that's the worst thing you can do and all that stuff, by the way, if you don't take care of it, then it comes back to bite you. Big time to see if you get her upset at 10 o'clock in the morning. You can live with it for the rest of that day. And it's much harder to get a person out of that bad space that they're in because you've hurt your ego. You know, she's for most people. Yeah, we all do. So anyway, avoid baby talk. And I don't mean necessarily Yingying, but we have a tendency when we're concerned about something somebody else is not feeling well or whatever. Our voice goes up to a higher pitch and on the receiving end that's babytalk. So it's really important that we keep in mind that we are adults, we're speaking to each other, so that's what you want to do. You use compliments and use humor, but never at her expense. In never this is tough, especially with a family member, you never argue, scold or criticize or admonish, period. Never. When you feel yourself like that and you know, she's been driving you absolutely bananas all morning long, you want to throw stuff at her. Take a very deep breath like we did at the beginning of this session, right. And if you need to go into another room for a minute or so or outside for a minute or so, just to get away, clear your head, come back in and forget it. As hard as it is and later on, if you need to, you can make just for yourself when she's asleep, right? You can make lots of crinkled paper and throw it at the wall if you want her to say whatever you need to do, but never in front of her. Because, again, you and I are able to actually work our way out of a bad space, people with dementia cannot do that anymore. And we have found that they live with bad feelings for a lot longer than we do. And at full blast. So this is really important. The other thing that's important is that you never ask, do you remember? Because that's the first thing we do, you know? Oh, don't remember. No, she doesn't, because she has memory loss. You guys, she doesn't remember. You know, instead, what you do is like, OK, again, this soon, this is your mother and you're thinking of one particular incident from your childhood that you want to bring up. You start talking about it. Don't ask her if she remembers because she won't. But if you start talking about it and you start talking about you only want to bring up happy memories, by the way, don't get into it because you can't do anything about whatever bad happened at that time. You know, so, so happy memory. Start talking about it. Talking about it with joy. You know, I mean, Mom, you know, I was just thinking back when I was 10 years old and we went to the whatever we did this and that, we had the best time. That was so much fun and I was wearing that dress that you made. You were so good at that.

Melissa Smith

I feel like these these these tips you're offering are framable, and our trends could take us to a really its relationship skills and even though we're talking about specific to that person living with dementia. I got to tell you, you know how many times I've used it as a parent to walk out of the room and take a deep breath or change, you know, change the subject or I love the example you just gave about. Remembering a situation, but telling it with a sense of joy and just even seeing your facial expression and you lighting up about even just a pretend story just now, I felt that viscerally, like I can I can feel and sense. And I think that's what you're trying to say. These emotions that are evoked by you, the person who's caring for the person with dementia is transferable. They sense that.

 

Jytte Lokvig

Absolutely. Yes, they can. So even if you don't open your mouth, you don't need to say anything. Whatever you feel is going to they're going to pick up on and reflect it. Yeah. Which is why it's also you talk about not talk about being stressed, because even if you start talking about being stressed or to somebody else, you know, you'll feel it and it's going to be translated or transferred over to your mom, whomever you are caring for. So anyway, just a couple more things here. It's only about four more things that the other one you don't want do you want to avoid is do you want? Unless she can see it. Do you want this or do you want this? But don't ask her what she wants for dinner if it's only 11 o'clock in the morning. Too abstract, first of all, it is you know, it just doesn't it doesn't work, so and you stop using the word no. You never used just like with the Ark, don't argue, don't use No. If she says, what are we going to have lunch or you just had lunch with this phrase it differently, are we going to have lunch? So are you going to say no? Because we just ate, right? Instead, you say and you say, yes, mom and dad or whatever, or in the meantime, you know, before we have lunch, I would really like your help with something. And that's where you fiddle box comes in handy.

Melissa Smith

So if you heard the yes and a lot and I I also like that phrase you just said in the mean time. Whatever.

 

Jytte Lokvig

And you course rephrased it like I promised you before we eat lunch, I promised you that we would do this and that and the other whatever, you know, whatever you can find again is it's a positive. You're delaying it. She has because of her dementia, she has a hard time killing if she is actually hungry or not. You know, and so very often the actually asking about food has to do with wanting something to do. But wanting to be involved somehow. OK, this is also important because there's several books out that actually talk about behavior issues. It's another one that drives me nuts. People when people are unable to communicate in any other way with you, just like with young children, same thing, you can't communicate. So they scream at you, right? They throw stuff because they're trying to tell you something. And the same thing with a person who cannot communicate anymore. How does she get across to you that something is not right? Well, we call it actual behavioral expressions. Which is very different from saying behavior issues, once again, it's not the disease. So anyway, and there are a couple more in here that. Just, you know, what a great resource. It is because I decided to announce the last minute this is a book, an art project and other fun stuff that you can do, but I just say, you know, before you even get into that, we need to understand communication and interactions better than we do, you know, fix everything that we do.

Melissa Smith

It does affect everything. What I have come to begin to really kind of wrap my head around, you know, my dad was a caregiver for my stepmom for 10 years. And then and she passed away early, early-onset and a complications of and, you know, even in the subsequent years, there's so much processing that I am learning that, you know, even hearing all this stuff until you're kind of in the middle of it, you're almost not ready to hear some of it. And I and I hope those that are listening are, you know, whether you're jotting a few notes or kind of filing it away for later, depending on what phase or stage are. And that some of the key things that I hear you saying is, is really almost just reframing our own perception because the person is going to be continuously changing and so are we. So as we can evolve our perception of what's happening, then we can be less stress and less reactionary and more allowing the situation. It's not about trying to fix them. Right.

 

Jytte Lokvig

And we're not superheroes either. And sometimes it's OK to tell mom, mom, I'm really, really tired or stressed right now. So do you mind can we just listen to some Mozart for a while, but whatever music she really likes, you know, but she's a human being and see, the more you relate to her as just as equals again, because, again, your equals at that point, you know. The easier it is going to be for you all, all these tips really make your job as a caregiver a whole lot easier.

 

Melissa Smith

Yeah.

 

Jytte Lokvig

And don't you know another thing? All that other stuff gets you either, like the dishes need to get done. No, they don't. What's more important right now is what's happening between the two of you, not the dishes or the laundry or even the making the bed. I mean, who cares that you can always do that later? Don't hoard too much, so it could be unhealthy, but, you know, I'm saying because we're conditioned to having to be perfect. So if we're caregivers, especially for caregivers for mom, you know, the house has to be pristine. You know, the clothes have to be folded, all that kind of stuff. No, they don't. Yeah. She's more important.

Melissa Smith

Yeah, yeah, I think that's a lifelong thing for most people, they, you know, either as a procrastination technique, they need to have things just so o or things need to be just so because they need to be in control. And, you know, if anything I've learned about this disease is there, there really is. There's if you ever want to question whether control is the thing, like it's out of the total right now, no more so that we can control the weather. So, yes, coping with it.

 

Jytte Lokvig

Go with the flow.

 

Melissa Smith

Go with the flow. Well, your examples are absolutely beautiful. I'd love for you to repeat the title of the book. I know you've written a couple of books.

 

Jytte Lokvig

6 actually.

 

Melissa Smith

That it's more than a couple.

Jytte Lokvig

This one is called because it was an Alzheimer's creativity project. The first one and the very first thing I did when it hit and I realized I was going to be stuck in the house. So, you know, I need something to do. So I went back to look at the first version of this and say, what can I add? What has happened since then? And so this is how it came about. So as the Alzheimer's Creativity Project got 2, second and if it's available on a course on the Amazon. And also, you know, we can also get it directly from me if you if you're here in Santa Fe, I'm sure we can make arrangements where we don't have to have to close contact with each other.

 

Melissa Smith

We're lucky to have you here in Santa Fe. And I there are two of the things I want to mention before we wrap up today. And that is I would be remiss to not talk about the Memory Cafe. And do you if you could succinctly say, because this is a worldwide phenomenon that has spread all over America. Yeah. And it's not a support group. Can you explain how it's different.

 

Jytte Lokvig

Is different because it is an event for both you and the person you're caring for. So something for the two of you to do together has nothing to do with your dementia, it's a social event that happens here. We were doing it once a month and we're still doing it online, by the way. Now it's a little different, but we get together. Sometimes we sing, sometimes we just talk. Sometimes we make art. That doesn't really matter. It's a social event in Santa Fe. We have it at the Children's Museum. And we will again when they open up, this is we just had our 12th-anniversary last month, it's fantastic job. And I started the first one in this country. And since then, we have well before covid, you know, who knows what's happening now? We have over five hundred. Yeah, it's pretty amazing cafés around the US now. And it's great because like you said, it's not a support group. Is strictly and is not a respite either you don't drop your person off, we're not a babysitting service, we're not a daycare center either. It really is just a chance for everyone to come together and just be there together as adults, and my greatest pleasure is actually when people come for the first time and they can't tell which one of all these people, is the caregiver who is the one with dementia? Wow, that's powerful. That happens a lot, you know, because the other thing I discovered is that with this phenomenon, with dementia, it's called aphasia. That's pretty common with people who lose the ability to make words and they stumble and stutter and whatever. Well, in a relaxed setting, they do a lot better. They do a lot better. So, again, it's hard to tell who was who.

Melissa Smith

Yeah, yeah, I do, too, and I love how the things that you're talking about is so much of what what I've been studying and researching in regards to the nervous system. You mentioned early on talking about a high pitched voice. And so the research shows in regards to that, like what all people prefer is a melodic tone, not a strong, loud, commanding tone, not a high pitched tone, but that melodic tone. And it's soothing to the nervous system. And and it's the same with social engagement when we feel regulated and a part of something and a part of a sense of the community their nervous system regulates, which is going to affect the vocal tone and their ability to speak. It is. Amazing, and it's just pure science and I love that all of it's becoming married and people are having a broader understanding of it all. Right, right, it's fantastic. I would love it. OK, I need to tell you a joke, I promise you that. Oh, yes.

 

Jytte Lokvig

And this I have to tell you, this is the favorite joke of all my groups. And it would have to repeat it many times, actually, because they love this joke. These two guys meet on the street. And Joe, Jack and Joe. Right? And Joe says, Jack, you know, I drove by your house last night at nine o'clock and I could look right into your living room. We need to get some blinds because I looked in there and I could see you and your wife making love right there in the living room. And Jack says Ha! This is a joke, I wasn't even home last night.

 

Melissa Smith

Oh, dear. Ouch. Oh, I think that's exactly what we needed for a day like today. Oh, man, humor is so good, so, so healthy, so healthy. And so I. I am so excited that we've had a chance to talk. And I would love for us to do this again and expand on some of the topics. And we didn't even get to touch on art. And I am such I'm such an art lover and I feel like that is such a powerful tool not only to do an activity with the person living with dementia, but but as a caregiver, you think creativity is a waste of time or it doesn't it's not productive, but in fact, it can be incredibly powerful.

Jytte Lokvig

Absolutely.

 

Melissa Smith

So, yes, I know. Next time I want to mention coming up in February. So if you're listening to this podcast way in the future, I hope that you go back retrospectively and catch all of these things. But coming up in February, February 8th, the 12th is dementia possibilities. And it is a week-long program which Jytte and a number of dementia specialists and experts in this field have put together an incredible program. This is something you would have normally done in person, but it'll be online, which means a much broader range, and you'll be able to reach a lot of people. And that's been sort of the gift. And I think the silver lining for me in this. So.

 

Jytte Lokvig

Right, right. Yeah. And it will touch on all kinds of things and including creativity. And we're doing it just for three hours. Because one thing I mean, I, I watch a lot of zoom presentations and virtual presentations and you see they're exhausting in a different way. I find I can't stay with something as long as I can in person. So we decided that we would bring together a program that was three hours a day, five days, the five days between February 8th and the 12th. And it goes the gamut from. The psychological aspects of both caregivers and people living with dementia and also fun stuff to do, singing, creativity, whatever. Fantastic. And so actually within the next couple of weeks, I can't promise it any sooner than that. I, I will have the website up and running. And it just look for dementia possibilities.com. Perfect. One word, OK, and it'll have the programming that you should. So you can see what we're talking about in your presentation.

 

Melissa Smith

And we'll include some of your contact information and your website that you have now, including your book. And all of that will be in the show notes for the podcast as well as on Facebook. So there'll be multiple ways that you can get get in touch with Jytte to connect and continue to grow and learn together. And I will say to anyone out there who's listening, if you are not connected somewhere as a community that you look for a memory cafe or you look for something where you can feel a connection. So while I value and am so supportive of support groups, I think that is a really imperative place where you can talk peer to peer with someone and really get tips and advice. And the memory cafe serves such a different aspect in terms of co-regulation and just fun and ease, whether it's online or hopefully eventually personal. Right, exactly. Exactly. You are amazing. Thank you so much.

 

Jytte Lokvig

Thank you so much.

 

Melissa Smith

You're just delightful and I look forward to our next time. So thank you so much.

Melissa Smith
We are so grateful that you took time to join us in our Caregiver Wellness podcast today, if you have not already made plans for giving Tuesday, which happens to be December 1st, if this is post December 1st, please go to our website at CaregiverWellnessRetreat.Com and click on donations any amount. I mean, we're talking buy me a cup of coffee to well, we'll take a million dollars. Just kidding. But if you if it is in your capacity to give back, it helps with us being able to provide all of these things online and free for our caregivers. And it is such a valuable and powerful resource for them to have wellness tools at their fingertips. And it's something that I am incredibly proud of as a daughter of a caregiver, my stepmom who passed away a number of years ago, I, I still see the residual with my father in terms of self-care and how valuable it is that every single caregiver take as seriously their own health as the health of the person that is living with dementia that they care for. So thank you so much for joining us today. It is a beautiful day in Santa Fe. I hope it is a beautiful day, wherever you are, and make it a good one.


 

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