Minnesota's trailblazing Alzheimer's choir reminds us: 'Love Never Forgets'

On Saturday afternoon at the Ordway Concert Hall, the Giving Voice Chorus, 170 voices strong, will present its spring concert. It will include nine new songs, all world premieres.

Half the singers have Alzheimer's and other types of dementia. The other half are their caregivers: spouses, partners, family members and friends.

But wait. People with Alzheimer's can't learn new things. Alzheimer's is the disease of forgetting, the long goodbye, the "death of a thousand subtractions," to borrow from author Daniel Shenk.

Or maybe some of our stereotypes about dementia simply aren't true.

In 2017, the American Composers Forum made Giving Voice an offer. Through its Healing & Hope Through Song program, the forum would commission a composer and a poet to create eight minutes of music to be premiered in spring 2018.

"Of course, we said yes, but with a caveat," said Mary Lenard, co-founder of Giving Voice with Marge Ostroushko. "One of the early signs of Alzheimer's is the inability to learn new information. We had seen our singers learn new music, but it was risky to think of a completely new piece. And then, when it turned out to be not eight minutes but an hour of new music, there were more than a few tense moments."

Victor Zupanc, resident composer/music director at the Children's Theatre Company, and poet Louisa Castner were chosen as the project's composer and lyricist. "I had doubts," Zupanc said. "We were writing all these songs, and I started thinking — are we totally driving this off the cliff?"

Everyone involved had personal experience with Alzheimer's. Lenard's father and Castner's mother both died from the disease. Ostroushko's mother is living with it now.

Zupanc's father died in December, but not before Zupanc paid a final visit. "The last few years, he had declined to where we couldn't even converse," Zupanc said. "This time, I brought music, old Slovenian folk songs. We sat and sang through them. He knew all the songs, knew all the words. It was fantastic. That was because of my experience with the choir."

Lenard and Ostroushko started the first Giving Voice chorus in 2014. Lenard was a former executive director of the Minnesota Leadership Council on Aging and the Alzheimer's Association's Minnesota-North Dakota chapter. Ostroushko was a Peabody-winning radio producer in the arts. Both were inspired by new research on how music benefits Alzheimer's patients.

"Music is held in parts of the brain that don't seem to be damaged by Alzheimer's," Lenard said. Music stimulates activity in both sides of the brain, sharpens the ability to focus, makes symptoms more manageable and improves cognitive function. It also brings joy.

The two women decided that Giving Voice would be a true community chorus. Anyone could join, at any stage of the disease. They could stay in for as long as they wanted. Previous singing experience was not required. The chorus would meet weekly at MacPhail Center for Music in downtown Minneapolis to rehearse. There would be a social component — coffee and cookies after each rehearsal.

Last month at MacPhail, Brindley-Barnett instructed, exhorted, teased, joked and led more than 100 people — half with Alzheimer's — through a rehearsal that lasted two hours, with a short movement break in the middle.

At one point, she raised a finger and said, "Remember, we added a fermata." When they remembered, she rejoiced. "Oh, yeah! Whoo! I love it!"

She asked, "Am I telling you enough how great you sound?" The chorus shouted, "No!"

Thirty people showed up for the first Giving Voice rehearsal in September 2014. Lenard recalls, "Honestly, I wept hard. It was when we started singing that I realized this was going to work. It's been magical ever since."

And catching. Less than four years later, there are 20 more choruses in the Giving Voice vein in the United States, Canada and Australia. Giving Voice offers a free online tool kit so anyone can start a chorus. Hundreds of people have downloaded it.

To David, Giving Voice is "a lot of friendship, a real enjoyable group of people. Everybody works together, and if there's a little flaw, it's no big deal. Who's going to stop and say, 'Dave, you missed a note'? It's been, for me, a release over Alzheimer's."

"David has a better voice than I do," Joan said, "so we came for him. But I'm really glad we're here for myself. For me, it's all-important because it is where I feel safe. Out in the community, you lose friends on this journey. Here, you're not alone. I've connected with so many people. Nobody's judging. There's a lot of support. This is the highlight of our week."

Jean Thomson joined Giving Voice in 2015 with her husband, John Sandbo, who was found to have dementia in 2008. When Sandbo died in 2016, Jean brought her mother, Evelyn Thomson (who prefers Evelyn Virginia Thomas Thomson). Evelyn turns 100 on Aug. 28. She'll be the chorus' first centenarian.

"My husband's Alzheimer's worsened greatly in 2015," Jean said. "When we started singing, he recovered some memory, and he always remembered the chorus. Every day he would say, 'Is this the day we go sing? Can we see Jeanie? Can we sing?' Now Mother will wake up and say, 'Is this the day we sing?' It's her first thought, as it was John's.

"The chorus becomes the most important connecting point a couple makes during their years together with this disease," Jean continued. "It's an equalizing thing. You're not a teacher anymore, you're not ministering anymore, you're not the caregiver. You're just two loves singing together. It's unlike any other experience I had during my time with John. And now, with my mom, nothing equals it for the amount of solace and energy."

Saturday's concert is called "Love Never Forgets," after one of the songs. The title came from a chorus member with Alzheimer's. A former professor at the University of Minnesota, he spoke of his journey, struggles and losses, then took his wife's hand and said, "I'll tell you one thing, though. Love never forgets."

The partner of a woman with Alzheimer's said, "It's like we're in this little boat, and we're pitching around on a really rough sea, and there's a heavy fog, so we don't know where we are. We're waiting for the boat to hit another rock. And then, all of a sudden, the fog lifts and the sun comes out, and we look around and there are all these other little boats, and we realize we're safe and those are our friends. That's what this choir is like."

Her story became "Ballad of the Dinghy," one of the most beautiful songs on Saturday's program.

All of the songs are love songs. And Giving Voice isn't a chorus of invalids and caregivers. It's a chorus of husbands and wives, partners, sweethearts, parents and children, friends.

"How fortunate that we are able to have an experience where we're equals, just as we used to be before this disease," Jean Thomson said. "The light shines through each person."