On today’s bonus episode we’re going to talk about a very unique choir, the Songshape Chorus.
It’s a choir that focuses on the humanity of people with Alzheimer’s disease, and creating communities for them and their loved ones.
Welcome to the Problem, I’m your host, Phil Lofton.
Meet Rick Cobb.
Music has always been a big part of my life.
Since 2016, Rick has been developing choirs in Indianapolis through his overarching program, the Resonance Initiative. In the last year, Rick’s shifted his focus to include a new group.
So I’m, I’m a big reader and I’m very familiar with Oliver Sacks, actually, who’s a music therapist and has written several books and, several lectures. And so, I’ve really appreciated his ah, perspective. I came across a documentary called Alive Inside that I highly recommend to everyone that’s listening to this particular podcast that tells the story of a gentleman who puts together play lists for people that are in assisted living facilities. And you just see them, you know, crumpled up, curved over in a wheelchair and then he puts on a headset and they just, they come to life. And I was a very impacted, just real quickly, I’ll just share, just even the opening a scene where he asks this just sweet African American lady. So, tell me about your childhood. And she says, Oh gosh, you know, I don’t remember much about my, my childhood. I, I wish I could help you, but I can’t. And he said, well, that’s okay. Well let me, let me put these earphones on you and let’s just continued to talk. And he puts in Louis Armstrong’s, the saints go marching in and she immediately, there’s a smile on her face and she says, Louis Armstrong, The Saints Go Marching In. I remember we would go down to the corner store, me and my sister and Mr. Rogers, he’d give us some candy and we just had a blast. And then we would go over to our friend’s house down the street and she just, I mean, just could not stop talking, whereas, you know, two minutes before she, she wasn’t able to speak. So again, this quickening art. And so that was made a huge impact.
So another project actually, which just started, the beginning thoughts or the seeds, that began to be planted back in January, is a chorus for those that have been diagnosed that are in the early to mid-stages of dementia and Alzheimer’s and their care partners.
Oh, so it’s not just patients, it’s caregivers as well.
That’s right. Exactly. It’s for, it’s for both of them. And in fact, Phil, I thought, that the most impact would be made by those that are dealing with the condition. But these last seven weeks, I have just experienced that it’s just as much of an encouragement, an impact on those care partners who give, Phil, unrelenting care day in and day out. And so, it’s just a way for them to kind of connect with their loved ones in a different way.
The music that we’ve been working on has come from, the patients themselves. And so, it’s been an amazing journey. But what does rehearsal look like? Well, we have, have, have a blast. So, we meet weekly for two hours, actually 90 minutes. And so, we have a time where there’s kind of an opening song ritual that they all know and, and sing and then about 45 minutes where we work on repertoire, the music that we’re preparing for our performance. And then probably the most important part, Phil, has been, we have about 20 to 30 minutes of socialization, so refreshments, food. And so, I don’t know if they’re coming for the, music or for the food, but I’ll take it. but it gives an opportunity for the care partners to, rub shoulders with other people that are in the exact same boat that they are.
Because we’ve discovered, that once someone is diagnosed or as dealing with dementia and Alzheimer’s, their life becomes more narrow and narrow and they become more isolated. Not only does the person that has the condition feel that way, but the care partner as well. And so being able to come, to be outside of their house to engage in community life, that they’re still vital part of, of just their neighborhood and, and, and all that they’re involved in. So, it’s just been great for them to kind of swap stories and to encourage one another and develop relationships and friendships as well. I just love to kind of hear people laugh and talk amongst themselves at the tables after our rehearsal. it’s just been…it’s been a gift, actually.
Back in November, the SongShape Chorus held their first concert in an old, beautiful church in Indianapolis.
I sat towards the back to record the songs we’ve been listening to today, and while I expected a good performance, which I got, I couldn’t have been prepared for how powerful it was to hear the individual stories of the patients and caregivers, many of whom shared in between songs.
Good afternoon, my name is Shannon Buelt. After raising three sons and teaching religion at Brebeuf Jesuit for 15 years, I started having memory challenges about four years ago. I was diagnosed with dementia in the summer of 2008. All in all, I’m doing pretty well.
We need the arts and we need music just as much as we need air to breathe and water to drink and food to eat. It’s so vital, and that are in this particular season of life definitely can benefit and experience hope and joy again through the gift of music. And there were lots of stories from people from the giving voice course in Minnesota that just so sharing those stories and then just hearing some of their performances.
To talk again about like what you were saying about like the inherent isolation that this disease has both on the patients and the caregivers. Yeah. This seems like such a powerful way to fight that. It seems like such a powerful way to fight that and not just fight it, you know, amongst the people, but to help de-stigmatize it too, right? Because it’s a statement. You know, I am still here. I’m still part of this community. If you have Alzheimer’s, if you have dementia, you can still contribute. You can still be part of something beautiful. That’s amazing.
It is amazing. Yeah. There’s [inaudible] their humanity is retained and it’s almost like that music defies dementia. It is powerful. and it just breaks down that isolation, which again, I think is just so important even as we think about our society and cultural in general, that we all kind of have our itunes playlist and it becomes, very individualistic, right? And so even the act of making music together live is almost like an archaic idea. But that’s one of the things I love about a choir is that, people are using their live instrument. No purchase is necessary, and everyone has a voice. And a having people come together and to experience it in a communal way, is, is important. And we can’t lose that. And it’s a lifelong activity.
And I’ve even come back to music and song, Phil, in very difficult seasons of life, experienced some health issues and just some career difficulties. and I couldn’t make sense of what was going on, but as I was able to connect with my music and even connecting with song, my story at that particular time was still unfolding. I may not have understood it or wished I had a different story, but I needed to let the music continue, and to unfold. And now looking on the other side of it, it’s just made my outlook not only on life, but even my understanding of music as something very vital and necessary, hence SongShape Chorus is so important.
Songshape Chorus, would not be able to do what it does without the help of CICOA and dementia friends of Indiana, Dustin Ziegler has been a tremendous help in that way and bringing a lot of people together early on at the table. Sound Minds, Dr. Tim Brimmer, professor of music at Butler and Doug Everage, have also been a tremendous help. I’ve had the opportunity to meet with the musical therapists, music therapists, Alegra Sorley the great American songbook foundation has given some input as well before we launched as far as, just helpful resources and resourcing in what this question would look like.
Actually, like, so I have two grandparents that had dementia, and this was, gosh, maybe 20, 30 years ago. And just, watching them and of course there weren’t the resources that are available. And watching my parents go through that was a very difficult, but I do, I do remember there’s a special moment that, I remember about my grandmother, my mother’s mother, who was in assisted living and we’d go to visit and she was just kind of lifeless. But there was one time where they were playing music and she got up and there was a nurse that was there and she began dancing with this nurse. And it was like, she was a little girl. She was laughing. And I’m just having a wonderful time.
So even that moment I think, was planted in the work that I’m doing now, and you know, it’s nothing, but as we look at the future, because I think right now the statistics say that 5.7 million Americans deal with Alzheimer’s or dementia with the projection of 16 million by the year 2030. as we see the boomer population, I’m experiencing that. and 70 to 80% of people that are, that are living with the condition are living in our neighborhoods. and so again, just reaching out. but yeah, my, my own story, watching my, my grandparents, my two grandmothers go through that, was difficult, you know, didn’t understand it. but now, you know, as I look back, you know, again, that unfolding story, if you will, being returned back to, in my own experience, seeing how music brings hope brings joy, brings the opportunity to be present in the moment.
For millennia, people have been telling stories and singing songs. We live storied lives. What can we do to honor our stories, share our stories with other people, listen to other people’s stories, be curious about their stories. And so, I just love every Friday. You know, as I look back over these seven weeks, I just have a collection of, of new stories of people that I’ve come to love and appreciate and to see them as human beings, not as someone that has dementia or is dealing with Alzheimer’s. so very grateful and it’s such a privilege.
To watch a video of the SongShape Chorus’ performance and to learn more about the choir, visit this episode’s page at regenstrief.org/theproblem.
Join us next time, when we explore diagnosis and screening for dementia – what it takes to do it well, and how to support families in crisis.
We’ll see you then, on The Problem.
Music this episode was, of course, by the SongShape Chorus. Our theme and additional musical cues were written and performed, as always, by Ominous Vegetables.