Henry sits slumped in a wheelchair in a care facility, his head drooping toward a tray table over his lap. His middle-aged daughter leans over, puts her hands around his, and the 91-year-old, who has lived with advanced Alzheimer’s for over a decade, jolts slightly at the interruption, but does not look up. She asks how he’s doing, and he says he’s fine. She asks if he knows who she is, and he mentally reaches for the answer, but then mumbles, “I don’t know, I don’t know.”
A nurse comes in with an iPod and a pair of headphones, puts them on his head and presses play. Soon after, Henry is sitting upright, humming to the music, raising his arms and moving in his chair. It’s as if the sounds have brought him back to life.
Just as remarkable is what happens when the headphones come off. In the video clip, taken from the award-winning documentary Alive Inside, an interviewer asks Henry how he feels about music. He no longer seems unresponsive or confused; instead, his eyes go wide with enthusiasm as he talks about his love of music, remembers how he used to go to big dances, names his favourite musician from those days — Cab Calloway — and then beautifully sings the first several lines of “I’ll Be Home for Christmas.”
It’s incredible to watch, but social worker Dan Cohen has witnessed dozens of similar scenes through his New York-based non-profit Music and Memory, an organization that helps get donated iPods with custom-made playlists into the hands of patients with Alzheimer’s disease and other forms of dementia across North America and around the world. The non-profit is also the subject of Michael Rossato-Bennett’s film, which won the Audience Award at this year’s Sundance Film Festival, and is being released in select theatres.
Through Music and Memory, patients are reunited with the music they love most, and the effects have astounded family members, caregivers, doctors and researchers alike.
“People who are pretty much immobile become more physically active. People who are not talking become much more talkative. People who are depressed become happier,” says Cohen, who explains that Alzheimer’s primarily affects people’s short-term memory, but their long-term memory remains largely intact. The music helps trigger memories and stimulates brain activity more generally.
“It’s simple and it’s very powerful,” he says.
But it’s not only patients who are benefitting; for medical providers, the results have been just as significant. With access to their music, patients become less agitated, so there are fewer conflicts between patients and less resistance to care. Because music has a calming effect, there is less need for costly medications to reduce anxiety and depression. Many of the patients begin to eat and start moving more, so their overall health is better. And while skeptics feared the iPods would further isolate patients, researchers have found that it makes them significantly more social because they start talking with people around them about the music and its associated memories.
“When somebody is awake and engaged instead of just head down, that means that they’re talking, they’re reminiscing more and they’re talking about stories the staff never heard — even if the person’s been there for years. So now there’s interaction,” says Cohen, who adds that family visits are also transformed, because there tends to be better interaction with kids and grandkids. The music provides a focal point that cuts through confusion and awkward silences. “And sometimes spouses are there every day, and it can be very hard. But we put a little headphone splitter in and they’ve both got their headphones on listening to the same music that they love, and they look at each other and they’re engaged.”
It could also be increasingly essential, given that the so-called “grey wave” is about to arrive in care facilities across North America. According to the Alzheimer Society of Canada and the Alzheimer’s Association in the U.S., 747,000 Canadians and more than five million Americans are living with the debilitating disease. In fewer than 20 years, those numbers are expected to nearly double. In Canada alone, the economic costs of dementia are projected to rise from $33 billion today to $293 billion by 2040.
In addition to the steep emotional toll, the financial cost to families is also staggering. In 2011, family caregivers spent an estimated 444 million hours caring for loved ones with Alzheimer’s, which represents $11 billion in lost income. By 2040, the number of hours will be up to 1.2 billion per year.
Cohen, who has an extensive background in using high-tech software in vocational rehab and community service, began exploring the idea of delivering music to people in nursing homes in 2006 after hearing a radio report about the ubiquity of iPods and wondering if he would have access to his music if he were living in care.
After some preliminary research, Cohen found plenty of nursing homes that offered music as a group activity, but out of 16,000 facilities in the U.S., Cohen could not find one that offered individualized iPods so that people could access their own music. He tried a pilot project at a 600-bed facility near his home, and it was such a resounding success that it quickly spread to several more facilities in the area, then across several states, then to seven provinces in Canada, and increasingly to countries around the globe, from Israel to Australia.
Some of those successes are chronicled in Alive Inside, which documents the experiences of patients across America. Watch the trailer:
“It still gives me shivers every time,” says Alzheimer Society of Toronto’s Sabrina McCurbin, who was inspired to launch a free iPod project for patients across Toronto — both in care facilities and still living at home — after watching a special screening of Alive Inside. “It’s just so powerful.”
With the help of a financial backer who also attended a Toronto screening of the film and was deeply moved, the society launched the project in January 2013, with the goal of distributing 10,000 iPods by 2016.
When people with Alzheimer’s and their caregivers go to the Alzheimer Society for support, they’re informed about the iPod program. Once they sign up, the patients and those around them provide suggestions for what music they might like. Volunteers come into the society every week and spend hours loading songs — many of which are purchased using donated iTunes gift cards, or taken from a library of donated CDs — onto the individual iPods. Because the society maintains the music database, if an iPod gets lost or damaged, the playlists are easily replaced.
Once the iPods are loaded, they are given to the patient, family member or caregiver to use at any time, whether it’s midday or the middle of the night.
McCurbin approached the endeavour with guarded optimism, but soon the accolades began rolling in — so much so that the Alzheimer Society commissioned an evaluation of the project that was released earlier this year. It found that the music offered “considerable potential” to improve the lives of patients and their caregivers, and that the benefits included improved cognition, communication and quality of life for patients, reduced caregiver burden and stress, and an improved ability to manage symptoms of Alzheimer’s such as depression, anxiety, agitation and aggression.
“You see the [Alive Inside] videos online and you think, ‘Well editing can make anything look pretty fabulous, and if you search long enough, you’ll find a Henry,’ so I took it with a grain of salt — but then you actually see it,” says McCurbin, who says that, of the 1,300 iPods that were distributed in the first year, only three came back because they weren’t working for the patient. What she hears far more often are stories from people who say the music has been life-changing.
“There was one woman who heard one of the songs that was played at her wedding, and then she started talking about her wedding in detail — the day, the weather, how her husband almost gave away her dress to the Goodwill. Very specific moments, and she talked about them as if they were happening to her yesterday,” says McCurbin, who has had spouses of patients come to her desk weeping with joy at the experiences they’ve had. “I wish I had the words of a neuroscientist, but it really seems the music is this key that unlocks all of those memories that haven’t been expressed or talked about in quite some time.”
So what, exactly, is it about music that has so much power over the brains of people with Alzheimer’s disease and other brain disorders? According to University of British Columbia neurology professor Robin Hsiung, researchers have found that when we speak, we involve a relatively small portion of the brain that interprets language, and primarily on the dominant side of the brain. But when we listen to music, many different parts of the brain are activated, and that activity is more evenly distributed both on the right and left sides of the brain, and at the front and back.
“We hear a lot of stories of people who are at the very late stage of the disease, and they may not even recognize family members, but when you sing to them, they will respond, and sometimes they will even sing the lyrics with you,” says Hsiung.
“Clearly the memory for music is not in the same part of the brain as other types of memory, like remembering faces or day-to-day activities. So we thought, ‘Why don’t we tap into that and bring that out in people who are already at advanced stages of dementia? Maybe it can help trigger them, improve their memory, or at least improve their quality of life so they can still find some enjoyment in their lives.’”
Problem was, little had been done to scientifically quantify the results people were observing, so Hsiung and his UBC colleagues, along with Vancouver music therapist Kevin Kirkland, did a clinical trial. In it, they used behavioural scales to measure patients’ levels of agitation and anxiety, and also measured levels of cortisol, a hormone associated with stress, in their saliva.
What they found was that, after 10 to 12 weeks of music therapy, patients were calmer and more relaxed, and their cortisol levels had dropped. The researchers also used functional MRI scans to measure blood flow in patients’ brains, and are expecting to analyze and publish the results in the coming months.
But one key to success with patients, Hsiung emphasizes, is that they get access to music they enjoy — and that’s unique to each individual.
“Music connects to more parts of the brain than just language or very specific stimulus, and is an important part of anyone’s development,” he says. “And they may associate different forms of music with different emotions and experiences. So we know that music is actually very individualized, and we cannot force people to listen to music that they don’t like, because that will actually cause more problems. But if we choose the music that people are used to and have enjoyed, it has a very calming effect.”
Even without confirmation from the scientific community, Angela Bianchi knows that the Toronto iPod program made a huge difference in the life of her aunt, Domenica. As a result of her Alzheimer’s, Domenica, who was in her 90s, was experiencing paranoia, confusion and agitation, to the point where the staff at the care facility felt she needed heavy sedation to protect other residents. But it turned out that certain music, most of it Italian songs from her youth in Italy, had the same effect.
“When we first put the music on, she had her eyes closed and all of a sudden she said, ‘Guys, guys, come over and listen to this great music!’ And then she started singing to it as well. She was in another world. And she had earphones on her head, but she thought everyone could hear it,” recounts Bianchi. “It was like that Robin Williams movie Awakenings. They were sleeping and dozing off, maybe sometimes from boredom too, and all of a sudden you put on the music and they’re awake — and happy.”
An added bonus for Bianchi was that, in trying to figure out what music Domenica liked — the senior had never talked about even liking music, let alone particular songs — her aunt would tell stories about her youth, when she and her friends would gather around a gramophone and dance to songs about the Rome skyline. Bianchi also put the songs on a CD so they could be played through speakers for the rest of the residents.
“At that point all the Italians gathered, and some of the other residents who weren’t signed up in the program would just gravitate toward the music and just close their eyes, and they would really calm down,” she says. “So it didn’t just happen with my aunt. I realized the others needed it as well.”
Cohen agrees, and believes strongly that individualized music should be made available to all patients with Alzheimer’s and other forms of dementia, just as other forms of medication are made available. He is quick to point out that the music is inexpensive, easy to use, gets families involved, reduces the need for drugs and, unlike medications, has no negative side effects.
“I’d like this to become a standard of care, which means not just having music available to every nursing home resident, but every elder, and every person with dementia, regardless of where they are — and to start off early,” says Cohen. “There is no reason at all not to do this.”