Her Mom Was Lost In Dementia's Fog. Singing Christmas Carols Brought Her Back

By Patti Neighmond

Published December 24, 2019 at 2:00 PM PST

Nancy Gustafson (right), an opera singer, used singing to reconnect with her mother, Susan Gustafson, who had dementia and was barely talking. She says her mom started joking and laughing with her again after they sang together.

Susan Gustafson had suffered dementia for several years when her family decided she needed around-the-clock care and moved her into a memory care unit at an assisted living facility in Costa Mesa, Calif.

Her daughter, Nancy Gustafson, a retired opera singer and artist-in-residence at Northwestern University in Illinois, says when she visited her mom for the first time, she was devastated.

"She was sitting in her wheelchair with her head down at a breakfast table," Nancy Gustafson remembers. "I'll never forget — looking so sad and looking so lost and so confused."

Her mom answered "Yes" and "No" to questions, but Gustafson felt she didn't really understand and answered just to be polite. She says her mother "couldn't put two words together" and didn't recognize her.

She tried looking at family pictures with her, in hopes that it would stir her mother's memory.

"I'd go through photo albums with her ... and she wouldn't show any recognition of anyone," Gustafson says.

After that, Gustafson visited her mom every month. During a visit in October a few years ago, she got an idea about how to make a meaningful connection with her. She wheeled her mom next to the piano in the living room of the care facility and started to play and sing.

"Mom is singing with me!"

She doesn't remember exactly what Christmas carols she sang, but she says she included some of her mother's favorites, such as "Hark! The Herald Angels Sing," "Deck the Halls With Boughs of Holly" and "Angels We Have Heard On High."

As soon as she started, her mother started singing with her. "I caught her out of the corner of my eye," she says. "And I just wanted to jump up and run out to call my sister immediately, saying, 'Mom is singing with me!'"

Gustafson may have been elated, but her mom had a slightly different reaction. Apparently she didn't approve of her daughter's piano skills. After about 15 minutes, Gustafson turned to look at her mom, who said: "You know that's not so good."

Gustafson remembers laughing hard. "That's exactly what my mother would have said to me had she been without Alzheimer's," she says. "She would have said that 30 years ago."

Though Gustafson is a professional singer, she concedes that her piano playing isn't that great. She promised to try harder and not hit the wrong chords. They sang for another 20 minutes, and "as we finished, I turned and looked at her and she said, 'That's much better.' "

Gustafson was floored. "I looked at her and I said, 'Mom, you know we're really getting good.' "

Then she told her mom that Christmas was coming, and "if we practice enough we could go to the shopping center, put out a cup and earn some money."

Gustafson remembers her mom laughed and said "Ha ha! The Gustafson Family Singers!"

And at that moment, their lives and relationship changed, Gustafson says, because all of a sudden "not only was she relating to me and she was cracking a joke, but she knew our last name and she knew that I was related to her."

"Music has a deep hold over us"

Gustafson's story is heartwarming but not surprising to Nina Kraus, a researcher and neuroscientist who directs the Auditory Neuroscience Laboratory at Northwestern University. She says sound is evolutionarily ancient and deeply rooted in the nervous system.

"The memories that we make, those sound-to-meaning connections that we have and that we've made throughout our lives, are always there," she explains. "It's a matter of being able to access them."

Because of this very tight inherent connection between memory systems in the brain and the auditory brain, just listening to "familiar sounds will evoke memory," she says. "I like to think of music as a jackpot in engaging how we think and feel and remember and move with sound."

It's remarkably common, she says, for music to evoke memories that have been lost.

In fact, the therapeutic power of music that Gustafson inadvertently stumbled on is being offered as a treatment to patients with dementia in many places. And it's the subject of a growing field of research.

One researcher looking into the role of music in the brain is Maria Chait with the University College London Ear Institute, who led a small study looking at brain responses to both familiar and unfamiliar songs.

The goal of the study, published in October, was to quantify just how quickly the brain can respond to familiar, meaningful music.

Chait found that the responses to familiar songs occurred much faster and were much stronger than responses to unfamiliar songs. And the responses arose very quickly, "within one-third of a second, or 300 milliseconds."

"Our results confirm that memory for music has a deep hold over us and is maintained in the brain very robustly," says Chait. She says this may explain why patients with dementia respond to music.

For more than a decade researchers have been finding evidence of a link between music and memory. For example, a study published in the journal Cerebral Cortex in 2009 found that listening to music helped people access autobiographical memories from years before. And small studies have started to show that music can be used therapeutically with dementia patients to help with cognition, behavior and mood. Researchers have found music therapy can improve memory and psychiatric symptoms, that it can reduce falls, reduce visits to the ER, and reduce the need for psychotropic drugs.

"Her vocabulary came back"

A few weeks after Gustafson and her mom sang Christmas carols together, she visited again. This time, the two of them sang with everyone else in the memory care unit. They enjoyed songs by Frank Sinatra and from the musicals Camelot and My Fair Lady. They sang for an hour and a half.

Then Gustafson and her brother and sister took their mom to the shopping mall for lunch, where they sat near the koi pond. Gustafson recalls: "She sat there and stayed connected with us verbally and said, 'What a beautiful place. What a beautiful day.' "

Gustafson was excited. "I mean, her vocabulary came back to her after she sang for an hour and a half!"

When they returned to the memory care unit, Gustafson says "she took my face in her hands and she said 'thank you for a wonderful day' and she kissed my forehead."

After that, the family hired a music therapist to visit her mother once a week. Before long, they hired a young singer to sing with her mom for 45 minutes, seven days a week. Gradually, but consistently, her mother started to communicate again. Gustafson was so moved she wanted others to experience the same. She started an organization, Songs by Heart, to help assisted living facilities start music therapy programs.

Music therapy is increasingly common in assisted living facilities. Just not common enough, says neuroscientist Kraus. Music therapy, she says, "should be a standard of care for dementia."