Maude’s Awards Executive Director Marilyn Raichle sat down for an interview with Eyleen Braaten, Executive Director of Giving Voice, a 2021 Maude’s Award winner, to talk about Giving Voice’s growing programs and impacts, and music in dementia care at large. The conversation has been edited for length and clarity.
Marilyn: Tell us about Giving Voice’s work with people with Alzheimer’s and other dementias.
Eyleen: Giving Voice is a nonprofit that was started here in the Twin Cities in Minneapolis to really harness the power of music in the brain. Back in 2014 when Giving Voice started, there was a lot of research emerging out of Norway and other parts of the UK and Europe that said that for people living with Alzheimer’s, their brains were being boosted from singing familiar songs. And so our co-founder said, “Let’s just start a choir. We’ll see what happens.” That first choir of 35 people who came together, to just see what would happen when a person living with Alzheimer’s and their care partner sing together, quickly turned into two choirs and then three choirs. This idea that there’s so much more in that music and the brain connection– that inspired Giving Voice. We’re a nonprofit that is really focused on changing the narrative of living with dementia, by creating these choral communities of joy that are all about empowerment, reducing stigma, and focusing on what people can do, and not being as concerned about what they can’t.
Music memory is amazing because I think that anyone can relate to getting in the car and hearing a song you haven’t heard in 20 years and you remember every word, but even more importantly, you remember the feelings associated with it. We choose a lot of songs that bring back those really happy, meaningful moments for a lot of our singers. We’re an organization that uses music as a vehicle to bring wellbeing, to bring change, and ultimately to change people’s minds about what it means to live with Alzheimer’s.
Marilyn: You started in Minneapolis; is this expanding to other cities?
Eyleen: We operate five choruses here in the Twin Cities. We have our Minneapolis Chorus, our St. Paul Chorus, and our Crosstown Chorus, which is kind of in the ‘burbs. We have a virtual chorus that allows people that have geographical barriers or maybe just physical limitations to participate in a virtual way. And then we have our central partnership, which is a Spanish speaking chorus. We really are committed to learning more about how to make culturally competent materials that can support this work. In 2016, Giving Voice wrote a toolkit, because with 6.7 million people living with Alzheimer’s in the US, there’s absolutely no way we could meet the need of creating enough choirs for people to bring this. Since then we’ve helped launch over 50 choruses.
We have choruses represented everywhere, from Alaska, to a few in the UK, and one in Australia. People have used our toolkit in various ways, from just downloading it and maybe having a call or two with us and then going on their own, to being super invested in all the details, and having us fly out and work with them. That’s what we’re here for now, is making sure that we’re creating ways to allow this movement to grow, by being the collaborator, the convener, and really inspiring this work.
We realized that in order for us to make the most impact, we can’t just grow bigger, we have to grow deeper, which means we have to be more culturally competent, and we have to understand that there are different barriers for different people. Our Twin Cities area supports choruses really well. Part of that’s because we’re urban. So what does it mean to be in rural America? What are some of the barriers there? What does stigma look like in a city of 1200? So we’re exploring how we can partner to do that work better.
Marilyn: You won a Maude’s Award in 2021, mid-pandemic, which made things difficult. What impact did Maude’s Awards have on that? How have you evolved and are there places you still want to go?
Eyleen: I think the impact of the Maude’s Award is very layered. I mean, first of all, to have national recognition for an organization that we feel has national impact, but is still very small! It was fantastic to be able to say, “Hey, we are here. We were recognized with this incredible award.” There was that visibility, but also for us, that was a pandemic year where that funding was crucial. We are a person-centered program and we serve communities. For us to be unable to serve in the way that we had was very hard on us as a nonprofit. That was really crucial funding at a time when we really probably needed it most.
I think the pandemic for us pushed the needle a little bit further in believing in the capability of people with Alzheimer’s. When everything started to shut down, the instinct of a lot of our stakeholders and our supporters was, “Ok, well, we’re going to have to just take a pause, because we are not sure how we’re going to continue to do this work, because we get together and we sing and we meet.” And when we all first shut down, the public health advice said that singing was legitimately one of the worst things you could do to spread Covid-19. The aspiration of singing was one of the most dangerous things you could do to spread it.
Marilyn: Oh my.
Eyleen: Part of that instinct for people to say, “I guess we’re going to have to just take a pause,” is really deeply rooted in the stigma that people with Alzheimer’s are less capable. And we said, “Well, we have to be able to do something!” And we were able to get almost every single one of our 160 singers on Zoom technology within two weeks. It was because we had trust, they had the desire to do it, and because as an organization, we weren’t going to let them believe they couldn’t, whether that’s because of their age, or their capability, or the fact that they were living with an Alzheimer’s diagnosis. So we figured it out. It was helpful in a time where things were pretty bleak, to say that we stand for seeing the capabilities of this population, and it doesn’t matter if our bread and butter is music. We said, “We can teach ’em how to use Zoom!”
And we did, and we still have a virtual program. Some people have just really preferred that. So I think that hardiness really stuck through the pandemic and allowed us to claim as an organization that we have really bold aspirations, and that if we don’t allow ourselves to see our singers rise to any occasion, who is going to? So we’re going to continue to do that. It’s pushed us to do more gutsier things. Our singers did a full concert that was all new music, even though the research says it has to be familiar music. And we thought, what if? So we had a composer come in and compose music that was specifically for this group, that told their stories.
One singer talked about how she felt as a caregiver, that she and her partner were in this boat and it was floating, it was uneasy, but when they came to Giving Voice they felt safe, like they were in a harbor. So this composer wrote this beautiful ballad that uses all of their words. It was the idea that we were going to embrace pushing that envelope because we truly believed that our singers were capable of more than what they were being told. Decline should not be the number one word in an Alzheimer’s diagnosis. So I think that really shifted our bold aspirations.
Marilyn: That’s just a wonderful story. Really beautiful. This question will be redundant then, because I’m going to ask what positive impacts have you seen from Giving Voice’s work in the community? But you’ve pretty much answered that. It’s incredibly inspiring.
Eyleen: The concerts are really fun. They’re a fun way for the community to get together. They’re a fun way for family members to celebrate their loved ones, and that’s not untrue of a lot of other nonprofits. We’re not exemplary in that nature. We put on wonderful programs that celebrate our singers. But what often is not seen is the power of this particular nonprofit is in the process and not the product. It’s interesting now, because years ago when people would come to visit, I’d always say, “Mark your calendars, this is the concert date, you have to experience it.” And now I’ve often shifted to say, “Hey, do you have time to just come to a rehearsal?” Because that rehearsal process is what allows our singers–both people living with an Alzheimer’s diagnosis and their care partners–to live fully in the six and a half other days a week that they’re not with us.
Marilyn: How often do they rehearse? How many weeks do they get together rehearsing?
Eyleen: We call them semesters, and we have a fall semester and a spring semester. The fall semester is usually 12 to 13 weeks, and the spring semester is a little bit longer, about 16 weeks, and they both have a concert at the end. Then we do a summer session that’s about five weeks, and that’s just more for fun. They sing for an hour and a half every week. And before that, we have social time, and after that we have social time, and that’s really important for our community. They’re with us for about two hours a week, and it’s never enough.
I sing with my dad on Tuesdays. My dad’s been living with dementia for about seven years and he’s been living with Parkinson’s for about 20. And I can say from very serious experience as primary caregiver to someone with a diagnosis, rehearsals are a really important time, when you think about the way the world sees these types of diagnoses. So if I was to take my dad to a restaurant, or if we were going to go get him a new pair of shoes, or if we were going to go enjoy a movie, there’s all these layers of explanation or accommodation you have to make for other people to understand your loved one. “Oh, I’m sorry. My dad can’t read a menu, but I think he wants this.” When you come to Giving Voice, you don’t have to do any of that. Everybody understands because they’re living the same path that you are. And so we found that we sing, we’re together about two hours a week, but this group, oftentimes, they’ll go to lunch afterwards or they’ll meet up on weekends. And we didn’t even know it, but there were some groups that were getting together on Friday nights and practicing. So the time that we’re together, and that community expands much more than just the hour and a half to two hours a week.
Marilyn: I’m curious. My mom lived with Alzheimer’s for 14 years and she had forgotten most of the words, but then if she was with you once you started singing largely she would remember or she’d remember some of it. So do you have people joining you who are not verbal, who are still able to sing along?
Eyleen: Yes, we have a wide variety of participation from our singers. And when I say singers, I mean care partners and people with the diagnosis alike, because we don’t make a distinction when you register, you don’t have to tell us who has what. We just ask that you come in a duet, and all we really need to know is your singing part. Are you a tenor, or a soprano? The ability for people to participate well in our program as defined by us is: are you enjoying it? Are you participating? We rehearse a certain set of songs each semester. So this isn’t just a singalong, it’s not like last week we did country tunes and this week we’re going to do Broadway. We rehearse the same songs each week, and the warmups are similar and familiar. We close every rehearsal with the song Happy Trails.
Because of that repetition, we have very few people who are not singing the words. We have a lot of people that I would say at this point would sort of be categorized as non-verbal, but because they are continually engaged in the routine of singing, and they’re singing next to a person that supports them, that by the concert time, most people are singing and singing in engaging in a really meaningful way. Most of our participants are in earlier stages of their diagnosis, but we would never kick someone out. And now that we’ve been around for 10 years, we have some people that have been with us for 10 years, and they would probably say on this call that it’s the one activity that they’ve still been able to do. I think it’s because of the repetition, but there’s something that happens, you know, when the piano starts playing and everybody’s singing. It’s pretty exceptional.
For the people who are in earlier stages, maybe they’re living with mild cognitive impairment and haven’t yet gotten the diagnosis of Alzheimer’s—the ability for them to sing and practice choral music in a meaningful way is twofold, because they’re doing good, healthy things for their brain. And we have some people that maybe didn’t sing in a choir before this, so the exercise of learning how to sing choral music is really helpful anyway. Our goal is to just meet people where they are, so if someone wants to come and sing with Giving Voice, it’s our job to figure out how to make them successful.
We have volunteers that sing with us, and they’re community members that can engage with a singer who might need a little more help following along, or are reluctant to accept that they have a diagnosis, and reluctant to seek help. We do a lot of volunteer training, so that volunteer might show up and say, “Oh, hey Frank, I forgot my songbook this week. Could we share? I really could use your help.” We try to make sure that the community that we create– these really strong volunteers and really strong participation from the people that take ownership of this– that everybody’s needs are being met. So we can accommodate those who are farther in the stages of the disease because we have built that support system.
Marilyn: Yeah. And mom would, if she forgot the words, she never forgot the melody– but more than that, she wanted to be with other people. She just enjoyed being with people.
Eyleen: Exactly. So we sing in three-part harmony. As I mentioned, I sing with my dad, and we had rehearsal yesterday. There were a couple songs that we are definitely still needing to rehearse before the concert in a couple weeks. And a reminder that if you’re singing soprano but there’s a couple notes you can’t hit, so you sing the alto part, that’s fine too. There’s a balance between artistic excellence and enjoying music. I think that there’s so much focus from the arts community on this idea that you’re successful in the arts when you’ve figured out how to do it at an excellent level. And I think that we’re in a position to help people understand that maybe you could look at it from the lens of artistic experience. When you’ve really been successful in the arts, it’s when you’ve created an experience for people that’s really high level, and that might look differently. We have some singers who are breathtaking to watch because they’re so engaged in what they’re doing. Are they singing every note the way it’s written in the score? Probably not. Does it matter? Probably not! It’s this idea that we can provide people an artistic experience that’s going to be meaningful for them and for the audience. I could totally see how sometimes it’s about just being a part of a group that really matters. It’s more fun than singing alone, right?
I think that there’s so much focus from the arts community on this idea that you’re successful in the arts when you’ve figured out how to do it at an excellent level. And I think that we’re in a position to help people understand that maybe you could look at it from the lens of artistic experience. We have some singers who are breathtaking to watch because they’re so engaged in what they’re doing. Are they singing every note the way it’s written in the score? Probably not. Does it matter? Probably not! We can provide people with an artistic experience that’s going to be meaningful for them and for the audience. Sometimes it’s about just being a part of a group that really matters. It’s more fun than singing alone, right?
Marilyn: Yeah. I mean, she painted, but she didn’t enjoy painting as much as she liked being in the painting group.
Eyleen: Oh yeah. It’s kind of like a book club in that you didn’t necessarily read the book, but you still go to the book club.
Marilyn: Exactly. So what are some of the important things you think other organizations who are working in this field could learn from you?
Eyleen: I think that oftentimes when you’re dealing with such a monolith of a thing, like trying to shift people’s perspective on a brain disease that largely the community doesn’t understand–
Marilyn: And doesn’t want to understand.
Eyleen: And doesn’t take any responsibility in it! So I think that what I would say to others in this work: be courageous, because it’s a privilege and an obligation to be able to educate people. You are rolling an incredibly large boulder up an even larger hill, but it is so important to understand that you will make an impact. Even if it feels very slow, if you’re changing one person’s mind– over time, that’s a lot of people. And it takes commitment to actually make change.
I always tell myself when I’m in a sticky situation: there’s nobody better. There’s nobody better to have this conversation. There’s nobody better to be doing this work, because someone has to. And so you have to just give yourself the credit that there’s nobody better to be doing this work. And one day, all those small little incremental steps, it’ll add up to a lot of people’s minds that have been changed.
Marilyn: I talked to this guy a few years ago, and he was telling me about his wife who lived in a nursing home, and he said, “When I see her, she knows who I am, and she tells me she loves me and she kisses me. And when I look in her eyes, there’s nothing there.” And I wanted to scream, and I thought to myself, why could he not see what I most likely would have seen, which is a woman with something to say? And I realized that if your entire experience with your loved one is nothing but sadness and loss, that is all you will ever see. And as soon as you can share something joyful, like singing, then you can see that in the person you are with, and it opens up everything.
Eyleen: Absolutely. It’s this idea of potential, and how exquisite it is. Everyone has potential. There’s more to every single human out there than what they can imagine or what we can imagine, and I think that there’s so much emphasis for someone that’s living with an Alzheimer’s diagnosis on the opposite, on what they can’t do.
“Everyone has potential. There’s more to every single human out there than what they can imagine or what we can imagine.”
Eyleen Braaten, Giving Voice Initiative
Marilyn: On what’s not there.
Eyleen: And that’s what you’re meant to look for. Okay, well, the changes in mom are going to be this, or the changes in dad are going to be this. And that is damaging to the human spirit.
It just takes a shift in perspective, which is why I think Giving Voice matters so much, because we don’t need people to take copious notes of all the different tips and tools and things that they can do. All we need to do is have them shift their mind just a little bit to be able to see that if you can focus on the potential and practice it, there’s so much more there.
My dad thinks that we’re still in Galesburg, Illinois, which is where he was born and where he grew up. So when we drive places, he will often point something out and say, “Oh, look at that. That’s the creek where I used to catch the turtles. And there’s an elementary school around the corner.” How easy would it be for me to say, “Dad, we’re in Minneapolis. This isn’t Galesburg, Illinois. That’s actually the public library.” What good would that do? But if you understand that there’s potential there, he’s trying to tell me something. He wants to share a story with me, and all it takes for me is just to shift my perspective and say, “Wow, catching turtles, tell me more about that!” And I actually had that conversation and I asked, “You caught turtles?” And he said, “Oh yeah, you could sell ’em for a dollar.” We had a wonderful conversation. If it was true or not, it doesn’t even matter. But the engagement was real, and the positivity was real, and I always have to remind myself that nobody’s asking people with Alzheimer’s questions anymore.
Marilyn: That was one of the hardest things I had to learn, is to ask my mom questions. And once I did, these amazing stories started to unfold, and it was so cool.
Eyleen: My grandmother in Florida also lived with Alzheimer’s, and I would only get to visit her occasionally, but when I would see her, she would have fantastical stories. And half of them were totally true, which is just crazy. She would, I kid you not—she would make costumes for exotic dancers in the fifties in Florida. Isn’t that weird? But then there were other things that were completely made up. She would say, “Oh, do you like this song? I wrote it.” and I’m like, “I think it’s Lionel Richie.” She says “Nope, nope, I wrote it.” The point is not exactly what they’re saying. The point is they have something to say. I’m not sure if it’s going to be truth or fiction, but that’s not the point. The point is that they have value. They have something to say. They have potential.
Marilyn: And you get to listen and just hop on for the ride. Do you have anything coming up that you’d like to share with us?
Eyleen : I have lots of things, but I think one really tangible thing is on June 9th, 2024, we will be doing a celebratory collaborative concert here in the Twin Cities at Minnesota Orchestra Hall, which is the largest performance hall in the metro area, that we chose on purpose. And we will be performing with all five choruses together, some original work and also some exploratory collaboration.
For example, we have a chorus in Minneapolis that sings kind of traditional choral stuff, and they’ll be learning some of the stuff that our gospel choir is doing, and our choir that speaks only in Spanish, they’re going to be interacting with other choirs as well, so that we can all get on stage and share and experience. So that is very exciting because I think it shows a little bit of the growth the organization has had since the pandemic where we’re looking to grow not only bigger, but grow deeper into what it really means to be a community of people living with Alzheimer’s.
Marilyn: That’s exciting. So tell me about this advisory council you’re putting together.
Eyleen: So the Board of Directors for Giving Voice has a strategic plan every three years. Over the last three years as we were engaging on what we wanted to really focus on in this strategic planning year, one of the things that was really important to me was that we put together a group of voices from around the country that represent all the different tables we want to sit at. Because one of the key values of Giving Voice as a nonprofit is collaboration. And I think part of that is recognition that Giving Voice doesn’t do anything by itself. So for example, all five of our choruses in the Twin Cities are in partnership with another organization that can support the work we do because like I said before, I don’t know much about the brain health, nor am I a choral director, but we have such rich resources in collaborating to figure out how we can do this work together.
And I don’t think it’s different as we think about the bigger “rolling in the ball up the hill” of changing people’s minds about living with Alzheimer’s. In order to be true to that responsibility that we have, getting people all to sit around the same table and represent their lens and what work they represent, to help strategize for bigger impact, that was something that was important to me in these next three years of Giving Voice as an organization.
So we sought out people from around the country that we thought had a unique and important perspective in this work. One of them happens to be on this call – Marilyn, I’m so appreciative that you said yes to being on the council. It’s really just the idea that we are better together and that there’s a really strong benefit for all of us to have conversations and explore ways in which we can work together. We’re going to get more accomplished if we compile resources. We had our first meeting in November with about half of the people online and about half here in the Twin Cities. I think it went well. There’s never enough time. The conversation, at least here in person, continued an extra hour and a half longer than we had intended. But I have high hopes that this group can come together and learn more about each other, which will in turn help them be more successful at what they do.
Marilyn: Were there conclusions of what next steps are first for the council, anything that stood out to you that people can do?
Eyleen: So I think the group left this first meeting as a “go back to our resources and have a better understanding of what are the connections and tables that each person sits at” that this work should be represented at. We encouraged people to look at the areas of funding, research and visibility. Where are you connected, and who else could you potentially bring to this work to help us continue to move the needle forward?
Marilyn: So here’s a question, because you have choruses and you have big organizations. So I noticed there were people there representing nursing homes and they have small groups who could benefit just as much as anybody from smaller choral groups. Is there an emphasis on smaller groups that would be able to thrive in nursing homes or senior living facilities? Or is that just something where you can’t go there yet because there’s just so much to do?
Eyleen: That’s an interesting question. I think from a theoretical perspective, any group of any size is going to benefit from this type of music program. And I think that we would support and advocate for this being done anywhere. I think the challenge that we’ve found in specifically residential facilities or memory care is that the ability for the program to authentically be doing with, and not doing for, has been challenging. So we’ve had some incredible buy-in from the large organizations that are supporting assisted living or memory care, because they see the value in it. But because they’re staffed in such a way, it’s been hard for them to commit to actually having a more participatory program. If it was something where Giving Voice could say, “Yeah, we’ll come in and we’ll run this for you”, that would be very welcome, I think. But really for I think our programs to work well, they have to be within the community and they have to spring up.
And so it’s less of a doing for, because there’s not as much ownership in it. But we’re trying to launch a little bit of a stronger presence– kind of like how the Alzheimer’s Association has the young Alzheimer’s group. Because what we’re noticing is that there are a lot of people who are the children of someone with a diagnosis that are desperately seeking opportunities to do something with their loved one. If you have a loved one in memory care or assisted living, and you’re told, “So your mom’s here with us at Beckwood and we know this great program– you could pick her up every Wednesday and take her to this chorus.” That seems to fit better because then they’re able to more organically be part of something that they’re doing with. But I also know that there’s always potential if it’s the right people involved.
Marilyn: The more people see and the more people are inspired by the music, the more it will spread to wherever they have.
Eyleen: We’re trying something this concert season in the Twin Cities where we’ve invited care facilities to bus people free of charge to come to our concerts, just so they can get a taste of what this is, get a taste of what this might feel like. Because there is a strong need there and there’s a good fit somewhere.
Marilyn: Well, I like that, free of charge, bussing them in to see it.
Eyleen : And then it’s kind of an entry point to say, okay, how would this work? Because if from, let’s say someone comes from a facility and they’re on staff there and they’re the enrichment coordinator and they see us and they think, I could do this!
Great! We will give you all the tools you need to do this. You need music, great. You need volunteer training, great. But it does tend to be way more sustainable if it comes within.
Marilyn: So what changes would you most likely to see in dementia innovation?
Eyleen: I think from an organization that has a lot of qualitative versus quantitative data, I think that I would like to see a revision in the way that data is driven in research. But that’s so heavily weighted in the way that the cogs turn in funding and research and all sorts of things. So that would be one thing that I would love to see changed, although I have absolutely no suggestion as to how that would happen, because data is also very important. And then the other is just encouraging all stakeholders to recognize that dementia innovation is a responsibility of all people, not just people that are impacted by dementia or work with dementia. It’s a responsibility of everyone because it’s very tangible, very real, and affects a very large percentage of our population.
Marilyn: We’re currently celebrating the fifth anniversary of Maude’s Awards and applications are open for the 2024 Awards. What advice or encouragement would you give to future applicants?
Eyleen: Dream big, celebrate your successes. Keep it person-focused– I think that’s kind of the true north. See the journey, and any measurable thing you can celebrate, do so, because it really matters.
And I think that having companionship in this work is so valuable. So I would say thank you to you, Marilyn, and for the work that Maude’s Awards does, because even the year that we were awarded, even just getting to know a little bit about the other organizations, you kind of feel like you’re not alone. Just to have, even in spirit, those kindred people around you that are really focused on this work is really meaningful. That’s one of those secondary benefits that I think an organization like this has, even if you’re not the winner, to remind you that you’re not alone in this work, and there are other people that are committed to it.
Marilyn: I just wanted to thank you so much. I think what you’re doing and the value of music is so profound. It’s just a joy to talk to you.
Eyleen: I so appreciate you taking the time to talk to me, and it was a joy to talk to you, and I think the best is yet to come with all this work.
Featured in this interview:
Giving Voice Initiative inspires and equips organizations to bring together people with Alzheimer’s and their care partners to sing in choruses that foster joy, well-being, purpose, and community understanding. Learn more at GivingVoiceChorus.org
Maude’s Awards annually gives three $25,000 awards to organizations and up to five $5,000 awards to individuals excelling in one of four categories of care for persons living with dementia and care partners. Learn more about the awards at MaudesAwards.org.