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Dr. Emily Silverman: This is The Nocturnists. I'm Emily Silverman. Today, we're bringing you a special crossover episode with Remo Health, a company that provides world-class interdisciplinary care to people living with dementia and their families. The guest is musician Kaylie Glenn, a young woman who founded a nonprofit, the Day by Day Project, which uses music to transform dementia care. Kaylie is a really amazing young person, and I hope you enjoy this episode as much as I did. Here it is.

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Dr. Emily Silverman: I'm Dr. Emily Silverman, and welcome to Talking Dementia with Remo Health. Join us as we explore the latest advances, insights, and strategies that help empower those living with dementia and the families that support them. Each episode, we sit down with leading experts, from physicians and researchers to policymakers and clinicians, to provide you with the resources needed to navigate this complex disease.

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Dr. Emily Silverman: I'm Dr. Emily Silverman, and you're listening to Remo. Today, we're speaking with Kaylie Glenn. Kaylie is the founder and president of the Day by Day Project, a nonprofit dedicated to transforming dementia care through the power of music. Inspired at the age of 10 when she first played violin in a memory care facility, Kaylie launched the organization, originally called The Dementia Project, as a teenager.

With a background in neuroscience, she has developed programs like the Memory Disco, which bring joy, connection, and improved quality of life to individuals living with dementia. Through her leadership, the Day-by-Day Project has engaged communities, trained volunteers, and reimagined music as a tool for care, earning national recognition for its innovative approach. Kaylie, thank you so much for coming on to Remo.

Kaylie Glenn: Thank you for having me. I really appreciate it.

Dr. Emily Silverman: Kaylie, tell us about your love of music. When and how did that begin, and what role has music played in your own life since you were young?

Kaylie Glenn: Music for me has been a huge part of my life. I like to say, and my parents like to say, that I fell in love with music when I was five years old. It started when I went to a teddy bear concert. A teddy bear concert was something that young people went to. They had tea. They danced around. There was an orchestra playing at this concert. My parents said that I sat right in front of the first violinist and just watched him the whole time.

Afterwards, he let me hold his violin. When I was five years old, I started taking lessons and really falling in love with the instrument. Violin, from that point on, became a huge part of my life. I fell in love with the instrument as a personal practice and something for me. For the life of me, I could not play in front of other people. I had crippling stage fright. That's where I started playing violin in memory care centers to practice that stage fright.

Dr. Emily Silverman: Because if you mess up, then it doesn't matter, because they may not remember.

Kaylie Glenn: Right, right, exactly.

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Dr. Emily Silverman: How did you get that idea of, "Maybe I'll practice in this super low-stakes environment, where I'm just bringing some joy to people, and they don't care if I'm practicing the perfect violin stroke," or something like that?

Kaylie Glenn: As soon as I started having trouble playing in front of other people, my mom invited me to play at the memory care center that she worked at. From that first time playing, I had an incredible experience. I was playing my simple pieces as a 10-year-old. As I started to play, the woman in front of me actually began to vocalize. I wasn't quite sure what was happening at first.

Afterwards, a nurse approached me. She explained that that woman had been nonverbal for four months. She was a former opera singer trying to sing along. I continued to go back and play with this woman until she passed a few months later, but I feel like that really helped me realize that music was something that I could use to connect with other people, and also practice through that stage fright.

Dr. Emily Silverman: Wow, what was it like to come back again and again and play with this woman who had been an opera singer and couldn't really sing anymore, but was still connecting with you and connecting with your music? What was that relationship like as such a young person? How old were you at that time?

Kaylie Glenn: I was 10 years old, and it was profound. I just remember feeling, honestly, this really strong sense of peace of, like, "This is it. This is what I should be doing," and something about being able to connect with someone that had trouble connecting with others. That was often pushed to the side. It really just warmed my heart and made me want to keep coming back.

Dr. Emily Silverman: Then you decided to formalize this and start an organization, so tell us about that.

Kaylie Glenn: Yes, so I started the Day By Day Project as a student organization when I was 14 years old. I like to take all the credit for it, but I really did have a big push at my high school. There was an organization called Student Organized Service. This encouraged young children, students, to formalize groups that brought service into the community. I began just bringing my orchestra into different memory care centers and recreating this experience through music.

By doing this, I was able to see that different things that I would do would have different responses. I would play things a certain way, and someone's feet would start tapping, or they would start singing along. I became completely obsessed with this idea that we had control over the moments of connection that we could create. We'd walk into a room, and we'd typically see glazed-over eyes or starry faces. Within 10, 15 minutes, that entire room transformed. That was the start of my hyperfixation for this work.

Dr. Emily Silverman: You said you started to have a sense for what types of songs or what types of musical phrases would induce certain reactions in people. I just think that's so fascinating, and was wondering if you could take us a little deeper into that. What do people like?

Kaylie Glenn: Yes, absolutely. From that experience, what I really started to see was I could put my violin down, and I could hold hands with someone. Their eyes would open up a little wider, or I could tap the rhythm on their knee, and they would start tapping their feet. There were these interpersonal connections and things that I could do that had a physiological response. A lot of that started to develop as I became really interested in this.

I had the honor of working with a neurologist. Her name is Dr. Rhonna Shatz. She's the head neurologist at the University of Cincinnati, director of memory care. She sat down with me, God bless her, when I was 14 years old. She told me so much about dementia and where I was. It really helped me create this foundation for this work. The biggest thing she told me was these ideas of engagement.

There were three pillars that she shared with me: rhythmic engagement, physical touch, and community engagement. Taken independently, each of these areas were a great way to connect with someone living with dementia. We worked together from that point on, so over 10 years, to create a musical engagement program that encompassed all three of these engagement pillars simultaneously. The idea was shifting from a passive listening response to an active listening response. That was my first research project, this trial and error with my organization, and finding the different ways that we can incorporate these pillars of engagement. The result now is just something incredible.

Dr. Emily Silverman: How did the organization grow? You're 14. You use this student resource to start an organization, and then you said it's been 10 years, so take us through the life of the organization and the milestones. How did it grow over time?

Kaylie Glenn: When I started it as a volunteer organization, bringing my orchestra into different memory care communities, that immediately started gaining a lot of traction. When we started stepping outside of just music and bringing volunteers in that didn't play a musical instrument to do those engagement techniques, we were decreasing and lowering the barriers for anyone to get involved with this work.

By the time I graduated high school, I had five or six high schools that I was working with on this project, and then I went to study neuroscience at Ohio State. I started this organization there as a club at Ohio State. That was to bring neuroscience students, pre-med students, pre-health students into this field to learn more about it. At that point, I was bringing in live musicians, along with those pre-med students, those neuroscience students that were doing the engagement techniques.

That really took off because this was a clinical volunteering experience that students enjoy to do every week, but the real growth happened when COVID-19 took place. For a long time, no one was really entering nursing homes. That was really hard because I think all of us could see that the people who needed engagement most were the residents in those communities.

When we were able to get a small number of our organization vaccinated, we were so excited to go into these communities, but a lot of us didn't play musical instruments. At that point, we became the first in the nation to use silent disco technology as this temporary replacement for live musicians. If you're not familiar, a silent disco is an experience where an unlimited amount of headphones are connected to one music source, so that everybody is listening to the same music at the same time through headphones. That became this new growth of what we were doing. We had a lot of fun with that.

Dr. Emily Silverman: You said you don't even need a musical instrument. Before the silent disco, was it more just sitting with someone and tapping and just rhythm keeping just without an instrument, or how did that work?

Kaylie Glenn: We never had a point in our journey where we didn't have live music or the silent disco. It was a seamless transition into; we knew we were going into these communities. We needed a way to engage with them, and that's when we became the first to pilot this new program.

Dr. Emily Silverman: Will a group of people come into a care facility, put headphones on the people, hit the switch for the music to start, and then what happens?

Kaylie Glenn: Exactly? Okay, so let me run through the first time that we tried this out, because there was a lot of uncertainty. I think the biggest question, even among our volunteers, was, "Okay, why are we doing this? Why not just play the music out loud?" The whole idea of the silent disco came because at my high school, after prom, we had a silent disco. It just kept coming up in my head of, like, "This would be really cool to try."

The first event, we went into the community. We had our normal engagement program. When we would bring live musicians in, we would still have volunteers that would work on the physical touch, rhythmic engagement, and community engagement. That didn't change. We put everyone in a circle, and we passed out headphones. We played a special playlist that I created. All of a sudden, within 30 seconds, people were standing up and dancing. We had 96-year-olds literally dropping it like it was hot. It became this huge dance party.

I was sitting there. I was like, "What is going on?" Again, why is this different than playing the music out loud? Why is this so much more engaging than what we had spent so much time perfecting? We broke it down, and we have three reasons. The first is auditory needs. Every headphone's volume adjust independently, making sure that even those that are hard of hearing could fully engage with that program. That is a huge barrier of engagement in senior living. It's like if you can't hear what's going on, you can't engage with it.

The second was attention. Similarly, as we age, and especially if we have dementia, our attention span is getting really, really small. Now, we were able to engage 100% of whatever attention span is available and orient it to the music. The last reason why it was so engaging is this concept of accessibility. We, as 18-year-old, 19-year-old students, could bring the power of music into any place at any time by anyone, regardless of if we played a musical instrument or not. This opened up the door for what could this look like in dementia care.

Dr. Emily Silverman: How do you choose the songs?

Kaylie Glenn: That's a great question. Typically, we choose songs that were popular between the ages of 10 and 30 of a person. Whether or not you have dementia, between those ages, our emotions are heightened. Our brain is developing. There's something about that age range that lets things really stick, especially musically. In addition, Dr. Rhonna Shatz, one of the first things she told me was, as we're going through dementia, she had me picture writing down every day of my life in a diary. When you're diagnosed with dementia and when you see those symptoms, what dementia does is it starts pulling out pages from the most recent pages onward.

A lot of people are actually living between the ages of 10 or 30. It makes sense for us to play those kinds of music. Then, since we're oriented in a group space, our goal is actually not to make a personal, intimate connection with every single song for every single person, because that's nearly impossible with all these different experiences and age ranges. Our goal is for every person to engage intimately with maybe every third song. In between there, they're dancing. They're using our engagement techniques, and we're creating this social environment that is really helpful for the brain.

Dr. Emily Silverman: The engagement techniques, how do you structure the dance party? Is it just a free-for-all, or do you actually direct people what to do?

Kaylie Glenn: How it usually starts is when we pass out headphones, everyone's eyes light up. They're like, "Oh, this is something new." That's when our volunteers go around and they do the engagement techniques. We've made this program replicable to different communities as well. In that instance, the activity director, the nurse's aide, whoever it is, will go around and start doing our engagement techniques. We have rhythmic engagement techniques. One of them is through our several different maraca-shaking techniques.

By first rhythmically engaging with a person, that's their first connection with music. Musical memories are encoded rhythmically in the brain, and so you're untapping those, and then we get into physical touch and community engagement. We have these structured techniques that, as providers, we do, but what we begin to see is that residents will start to do them with each other. They'll pick up on them. One care partner in a community can engage up to 30 residents at a single time very easily with this program.

Dr. Emily Silverman: Besides the maracas, what would physical touch be? Would it be tapping on their shoulder, or something like that?

Kaylie Glenn: Yes, so tapping on the shoulder, we have focuses on physical touch used for connection, or physical touch used for rhythmic connection. Same thing with community engagement. That's something that we train care partners on. As soon as they're interested in the program, we go through a training, so that they have these tools in their toolkit.

Dr. Emily Silverman: Wow, so how many care facilities have you personally walked into and done this with?

Kaylie Glenn: Personally, probably over 100.

Dr. Emily Silverman: Wow.

Kaylie Glenn: Every student organization that we have, so one pillar of our organization is this intergenerational connection. Every student organization, we actually encourage them to choose one or two communities to go to every week. That way, they can start to get to know the residents. A big goal of ours is to transform stigma. We have young people going into communities, and they walk away. They're like, "This is my favorite part of the week." I never thought in high school, people would say that to me. I was pulling teeth to get people to go into nursing homes, but it's a whole different environment of, "Oh, actually, this is a really fun place to be," shifting that frame on aging a little bit.

Dr. Emily Silverman: Yes, I was going to ask. Some young people have old souls. They love hanging out with old people. They just feel really comfortable in that space. A lot of people who are young don't necessarily like hanging out with older people, or it makes them uncomfortable, or for whatever reason, or they might just think it's boring, or that it's not cool, or whatever. How do you get this work to be fun and cool? Do you find that young people actually are starting to change the way that they think about older people and aging?

Kaylie Glenn: Absolutely. With everything, I think education is the first step. I actually don't believe that young people's stigma on older adults is rooted in negativity. I think it's rooted in ignorance and not knowing what to do or what to say. With this approach, this memory disco approach, what we're taking away is those barriers of language, of knowing what to say.

Every single thing that is between a young person and older person that feels uncomfortable is literally removed. We replace them with these techniques and guide young people, and, hey, if you do this, you can lock eyes with them and have a connecting experience. When they experience that, tears are flowing. There's nothing like it. When they walk away, I think it's this moment of, "Yes, that was completely different than what I thought."

One of the things that we love as an organization and that I love as a person is oxymorons, and so exactly like we're making it cool to go into nursing homes. We're making students literally hang out like they're on their Saturdays from 2:00 to 4:00 PM. They're going and dancing with older adults. Most of which have advanced dementia, and they're writing about it and posting about it on Instagram.

Dr. Emily Silverman: Wow, I think it's clear what the older folks get out of it. They get a shock of entertainment. They get exposure to young people. They get to dance and laugh and have fun. Often, we imagine nursing homes being these really sad, lonely places, so it's clear why a silent disco would be fun for them. What do you find that the young people are getting out of it? When they post on Instagram, what's in it for them, or how are they growing, or what are they benefiting?

Kaylie Glenn: After most sessions, we come together, and we debrief. One of the biggest things that we talk about is just using this as a learning experience. I will say, I think the first thing that they get out of it is the benefits of music. Every single person in that experience is getting movement. They're dancing, they're listening to music together, and they're connecting. That is healthy for every single person. I think it is like a dopamine boost.

Dr. Emily Silverman: Totally.

Kaylie Glenn: They're coming back. I think that is the first reason is this really positive association. Then, when we dive into it a little deeper, we notice that the people that are encouraged to be a part of this organization typically know a family member that had dementia. This is really personal for them. One of the things that we started doing for every student organization is-- and so when I was running it, I passed it on.

Now, there's another leader at Ohio State. His name is Andrew Hartman. He's incredible. He has multiple family members that had dementia. He runs that organization at Ohio State. It's a really great leadership opportunity for students to have. I think one of the biggest things is we're able to create this intertwined community of students that all are connected with the profound impact of dementia, whether they're experiencing it for the first time or they have someone that they loved. That intimate connection that we all share is unlike anything else, so we're building friendships as well.

Dr. Emily Silverman: Do you have any stories or anecdotes from this work that you think would be worth sharing? You talked about being 10 and going with the violin and playing the violin and the woman vocalizing and making noises, and then realizing she was an opera singer, and how powerful that was. Any stories or examples of similar moments from your organization, either unexpected connections, or maybe there was something funny that happened, or anything like that?

Kaylie Glenn: Absolutely. The first person that comes to my mind is a man named Bruce. Bruce really changed the framework of our organization from this fun, lively volunteer experience to expanding it to really transform dementia care within communities. Bruce was a music band, tried and true. He played in multiple bands. He was a composer, a conductor. He played the keytar. We've seen pictures of Bruce from his younger days, and he's just this amazing, vibrant person.

When I got to know Bruce, he was sitting in the corner of his memory care center. He could not vocalize with anyone. He could not communicate. He was the person where, when young people come into communities, they're like, "Oh, don't worry about him," because he was hard to connect with. When we would play live music for Bruce, he couldn't seem to have the attention or the focus to really engage with it.

He was also the kind of person that people would say, "Oh, he doesn't like activities." Anyway, Bruce was completely withdrawn. When we would do this program for him, we would pass out headphones, and we would put them on him, this moment of like, "If he doesn't like it, that's okay, but maybe he will." The first time we did this, we put headphones on him. We played Frank Sinatra. He stood up. He lifted both his hands to the sky, and he started conducting again.

His eyes lit up. You could see that he was remembering something in his head. Tears started flowing. We would go over for Bruce, and we would put our hands on him. He would start dancing with us. I never knew Bruce before he had dementia. After multiple of these occurrences, we were able to bring his loved ones in, so like his wife, his children. We were all dancing with Bruce. For me, Bruce was an excellent example that even in the latest stages of dementia, when you think that you can no longer recognize a person, they're still there.

We just need to find the right way to connect with them, and that was through music. Moving past that, I walked away from that first experience with Bruce, and just had this nagging feeling, like, "This needs to be everywhere. This is so easy. Anyone can do it." There's no reason that this shouldn't be in every single community, serving every single purpose, and that became the beginning of our nonprofit journey.

Dr. Emily Silverman: You can imagine if someone gave Bruce a pill, and then he stood up and did that, the company that made that pill would get rich. [laughs]

Kaylie Glenn: Everyone would have that pill.

Dr. Emily Silverman: Right.

Kaylie Glenn: That's something I've been having trouble coping with and understanding as I were getting into this work of, like, we've done research. Ohio State has done research on this program. We have incredible results. I have some here in talking about reducing challenging behaviors. Reducing challenging behaviors is a thing that a lot of medications are trying to do. 90% of care partners observed enhanced mood and behavior during the memory disco activity. 95% noted improved mood and behavior four to six hours after the activity. We're talking about, like, okay, if that was a pill, everyone would do it. I think that is where this passion of wanting this to be everywhere comes from.

Dr. Emily Silverman: You chose to go to school and study neuroscience. Tell us what you know about how music interacts with the brain. Music is medicine. How does that work?

Kaylie Glenn: When we listen to music, our whole brain becomes activated in a really unique way. Our brains segmented into all of these different specialized functions, but music goes through all of them and organizes them together. For all of us, music promotes memory, movement, motivation, and making friends. When we think about memory, have you ever been in a car when a familiar song comes on, and it takes you right back to a different time and place when all of these emotions and memories start flooding in?

That's because our emotional memories are rooted rhythmically in our brain. That's something we all have. A lot of our musical memories help us remember our ABCs, or nursery rhymes, or our first song at our wedding. We can't control it. It's just a part of our life, but movement, we go to the gym, we listen to music, motivation. If you're studying or working, or even getting out of bed, music helps with that. Then, making friends, how many of us have gone to a concert or listened to an orchestra together? You become connected with those individuals that you're surrounded by.

For all of us, music is so incredibly helpful. That is the same thing for people living with dementia. One of the most profound things about this work, and when I learned this, I had chills go through my whole body, is that those musical memories that help us remember things like our ABCs, our nursery rhymes, our core memories that are tied to music, those are preserved throughout dementia. Even when someone's cognition, language, movement decline, those people will still be able to engage with those musical memories. Knowing that is the root of what this organization is. We believe this needs to be at the forefront of dementia care.

Dr. Emily Silverman: I'm almost 40. Sometimes I'll have the experience where I'm walking down the street, and a song will pop into my head. It'll be like a commercial jingle that was on TV a lot when I was 10, and it'll just pop into my head. Sometimes it's in a pleasant way, if it's like an old pop hit or something like that, or a top 40 song. They call them earworms. You can't get them out of your head. [laughs] 30 years later, you still can't get them out of your head. I think, positive or negative, it just goes to show how persistent those musical memories can be in your brain.

The other anecdote I wanted to share is I remember years ago watching a video about Gabby Giffords, Gabrielle Giffords. She was a United States representative who was sadly shot at a mass shooting. She was shot in the head, and she survived. She's still alive. I remember watching a video of her rehabilitation because the bullet had gone through the part of her brain that controls language. She was trying to learn how to speak again.

When she would try to speak, the speech wouldn't come, but then she had a speech therapist who was sitting across from her with a guitar. They would sing a song, and she could sing like she could sing, but she could not speak. As they were rehabilitating her speech, they used music as the on-ramp to getting the language back online. I just wanted to share those two examples. One personal and one just something I saw about music in the brain. I don't know if that resonates with you at all.

Kaylie Glenn: I love that, and it does absolutely resonate with me. It piques your interest of, there must be a different pathway. There's something magical that's happening with music, and the way that it can elicit motor functions or language functions that we think aren't there. Seeing that day after day, it's just extraordinary.

Dr. Emily Silverman: What are some of the challenges that you have faced in getting this type of therapy into spaces where elders are-- like you said, it's almost so effective that it's unbelievable. Like we said, if a pill were this effective, it would make all the news headlines. What are the challenges or barriers to getting this type of healing and this type of joy and this type of connection and this type of medicine into spaces where people with dementia are residing?

Kaylie Glenn: That is a really great question, and it's something that I've had to navigate throughout everything that we've been doing. First, thinking about how we were able and how we're trying to get this into communities after that moment with Bruce of, like, "This needs to be everywhere." A team of us neuroscience students, neurologists, and leaders in the field got together. We ran a pilot program at a local community in Columbus, Ohio, and that was to study if music could be more than a fun, lively activity, but a tool to enhance the lives of care partners, to give them something that they could use every single day.

We ran interviews. We studied what is really hard about your job. Things like sundowning came up, or meal times, or movement. We were able to design memory disco activities for each one of those things, so we have a sundowning memory disco, an exercise memory disco, a meal-time memory disco. Each one of those things uses research-informed techniques to have a specific outcome like, for instance, with meal time, chewing as a rhythmic activity.

When you're able to tie that to music, you can increase food consumption or de-escalation, the idea behind hard behaviors coming from confusion, and that leading to agitation, which I, for one, think is a very normal response. If my world were changing, I would definitely be agitated. If you're able to then transport them to somewhere familiar, we can manage those behaviors a little bit.

Each one of these activity guides has been created for communities in a step-by-step fashion, each with their own playlist. These activity guides were our aim, in addition to our techniques and the equipment, to replicate this experience. That's our memory disco package that communities can become involved in. When we want to bring this into communities, I think our biggest challenge is actually rooted around what you said about if there was a pill for this, everyone would do it.

I will say, before anything else, every single person that we've worked with in the aging industry, from activity directors to executive directors, values the power of music so much. It is incredible how people lead with their heart, how compassionate they are, and how much they really care about the people that they're caring for. That at all is not an obstacle that we've had to overcome.

I would say the obstacle comes from budgets and from the attention and the priority that overarching organizations put on pharmaceuticals over natural techniques and things like that. That's been something we've had to navigate of really using research and using these stories and these anecdotes and these opportunities to share the power of music to climb the ladder and become a priority for communities.

Dr. Emily Silverman: Right. I imagine health insurance doesn't cover any of these activities.

Kaylie Glenn: Right, exactly. It has to be something that they're prioritizing and that they see a long-term return of investment with.

Dr. Emily Silverman: Looking ahead, what is next for you and for your work and your organization and your studies? Are you still in school, and where do you see this all going?

Kaylie Glenn: Yes, so I graduated a few years back. For me, things have been so naturally growing. I feel really lucky for that. My original plan was to go to medical school. I did all of the pre-reqs, put on my application, and everything. At the time of deciding to go, we actually had an angel donor give us money to be like, "Hey, why don't you do this?" I was like, "Yes, we need to do this. This is so important." Since then, it's just been the most incredible journey to be on.

What's next? We completed our first research pilot through Ohio State a few months back. Right now, we're just using some of that data that follows people from managing behaviors to de-escalation to moments of connection, and making that the forefront of care. Really, being like this is not just this joyful activity. This is a tool. This has actionable results in changing people's mindset on that, and trying to get into other communities, and train them, so that this can be an everyday part of care. With my studies, I have a couple of things on the horizon that I'm thinking about going back to school for, but it all comes after I feel like the organization is in an amazing place.

Dr. Emily Silverman: There's not a lot of people who can say that they started something like this when they were 10 or when they're 14. You really have built something. That's incredible, so I just wanted to say thank you for everything that you've done to make the world a better place. Thank you also for coming onto Remo to chat with us. Really appreciate this conversation.

Kaylie Glenn: Absolutely. Thank you so much for having me and highlighting some of the things that we're doing.

Dr. Emily Silverman: I have been speaking with Kaylie Glenn, founder and president of the Day by Day Project. Thanks again, Kaylie.

Kaylie Glenn: Thank you.

Dr. Emily Silverman: Thanks for listening. For more expert guidance on managing dementia, visit www.remo.health/learn.

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Dr. Emily Silverman: This episode of The Nocturnists was produced by me and producer and head of story development, Molly Rose-Williams. Our executive producer is Ali Block, and Ashley Pettit is our program director. Original theme music was composed by Yosef Munro, with additional music from Blue Dot Sessions. The Nocturnists is made possible by listeners like you.

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