Joanne Faryon | <em>inewsource</em>
Steven Nelson had decided he wanted to be a nurse. He had spent his teens in trouble and his early 20s in prison. Finally, in his mid-30s, with a steady job as a receptionist in an urgent care and five kids to support, he believed he had found his calling.
“He tried to get his life together,” said Gloria Hawkins, Steven’s mother.
The regret in her voice wells, as Hawkins recalls what had been the happiest moments of her son’s life, cut short by five bullets and a beating to the head at a San Diego nightclub in 2011.
Nelson, now 44, suffered a traumatic brain injury that was so severe he has been kept alive in a nursing home with breathing and feeding tubes for nearly seven years. He is unable to move his body, except for his left hand. He doesn’t speak.
But music may now be offering hope where there once was none, both in Nelson’s quality of life and in his ability to respond to the world around him.
Science has shown music has a way of invoking memory. It’s been used to help people suffering from dementia reconnect to themselves and to their environment. Now, researchers are trying to figure out whether music can be used as therapy for people once considered unreachable.
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“There is neuroscientific evidence that music is very embedded deep in the brain … and linked to experiences,” said Debra Bakerjian, an associate adjunct professor at the Betty Irene Moore School of Nursing at the University of California Davis.
Researchers at UC Davis have partnered with the California Association of Health Facilities to determine whether music can replace antipsychotic drugs in nursing home patients who are prone to agitation and help improve their quality of life.
“We’re going to try to show an association between the use of the music program and whether or not it reduces their aggressive behavior. Whether they can come off from their antipsychotic medication, whether they’re at least using it less frequently,” Bakerjian said.
More than 4,500 men and women living in 300 California nursing homes are taking part in the study, aimed at residents with dementia. Those with traumatic brain injury can also display aggressive behavior, requiring medication and even restraints.
Nelson’s bed is kept low to the floor with a mat below because he has become so agitated he has fallen out of the bed three times. That made him a good candidate for the study, said Christopher Walker, Villa Coronado’s chief operating officer.
“We wanted to see, does it help? Can we use a non-pharmacological intervention to actually reduce some of these things (and) improve their quality of life?” Walker said.
On a Wednesday morning, Vanessa Radilla, an activities worker at the Coronado nursing home, placed headphones on Nelson and clipped an iPod the size of a matchbook onto his hospital gown. It was preloaded with some of his favorite songs and artists: “Stand by Me” and “Amazing Grace,” and 50 Cent and Eminem.
“You wanna listen to your iPod today?” Radilla asked. “Are you gonna dance?”
Nelson, with his mother at his bedside, nodded. He smiled. He lifted his head so the headphones could be adjusted. All of these seem like routine responses but not for Nelson. For him, they were like tiny miracles.
He was first diagnosed as being in a vegetative state as a result of his brain injury. While people in a vegetative state may appear awake and alert, medical experts say they are unaware of themselves or their environment.
inewsource first reported on this population in 2014 in a special series called An Impossible Choice. The stories exposed a largely hidden world of special nursing home units in California, in which more than 4,000 people are kept alive with breathing and feeding tubes.
Recent research suggests music therapy could help with recovery for people in a coma or in a vegetative state. It may even help diagnose consciousness, which continues to mystify scientists. Studies have consistently shown high rates of misdiagnosis in vegetative patients, indicating there is more likely a spectrum of consciousness where they drift in and out.
“Half the time you might think that your patient is unconscious, although he is conscious or showing signs of consciousness. This is mind-boggling,” said Caroline Schnakers, an associate clinical professor in the Psychiatry Department at UCLA and an assistant director of the Casa Colina Research Institute.
Schnakers’ work has demonstrated a 40 percent to 50 percent error rate in determining consciousness. A misdiagnosis can affect medical treatment and end-of-life decisions, Schnakers said. Getting the diagnosis right is especially important when predicting a patient’s chances of recovery, she said.
“The patient in a minimally conscious statresee has more chance to emerge or get better than a patient in a vegetative state,” she said.
For Nelson, his condition appears to be improving, but he hasn’t been re-evaluated by a neurologist in four years. His doctor, Ken Warm, has noted Nelson’s improvement in his medical chart. But Warm acknowledged the nursing home, run by the nonprofit Sharp HealthCare, does not have the resources to evaluate residents for consciousness. Most of Villa Coronado’s long-term nursing home patients are covered by Medi-Cal, the state health care program for the poor and disabled.
“It’s very clear that he doesn’t fit that (diagnosis), that he is responding to events in his environment which would not be consistent with persistent vegetative state,” Warm said. “There’s so much unknown about their cognitive function and their ability to process language or what recovery they might have in the future.”
The idea of using music in nursing homes took off after the debut in 2014 of the documentary, “Alive Inside: A Story of Music and Memory.” The documentary showcased the work of Dan Cohen, who had been providing iPods to nursing homes since 2006 and is now the executive director of the nonprofit organization, Music and Memory.
The film follows the stories of nursing home residents with dementia who were “reawakened” after listening to songs of their youth. Music and Memory now provides iPods to thousands of nursing homes across the country.
UC Davis researchers plan soon to have initial results from their study. But regardless of whether music is able to replace medication, Bakerjian said she is certain it can improve quality of life.
“I was almost in tears doing this interview with an activities director in a nursing home who was sharing how excited they were at their nursing home about the response of the residents. He told me how they just come alive,” she said.
Walker, the nursing home director at Villa Coronado, has also witnessed a similar change in some of the residents with iPods.
“When you see someone go from non-participating in anything, to all of sudden smiling and nodding their head, and it really seems as though they are reacting to the music that they’re listening to, it’s really amazing,” Walker said.
Gloria Hawkins knows her son, Steven, will never fully recover from his brain injury. But she would like to know whether he is capable of more — especially now as she watches him respond to the music he once loved.
“Sometimes he’s very emotional with it and stuff, like he’ll remember and tears will start coming,” she said. “Or he’s very happy, he‘s laughing. It just seems like his memory, just kinda like soothes it.”
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