In the summer of 2012, my father passed me a well-worn copy of New York magazine with a provocative cover story by Michael Wolff titled “A Life Worth Ending”. In the story, Wolff chronicles his mother’s steady decline through dementia. I still remember the quote on the cover: “Mom, I Love You. I Also Wish You Were Dead. And I Expect You Do, Too.”
My father and uncle—like many Americans—related to the author’s sentiment, and his dilemma: Modern science allows us to keep our loved ones “alive” far longer than ever before, even while diseases like Alzheimer’s can reduce them to empty vessels, imprisoned in their own flesh. What about the quality of their lives and the quality of the lives of those left to care for them?
When I saw my grandmother in her later years, she often seemed politely embarrassed by her Alzheimer’s, touching her cheek, smiling, shaking her head and apologizing when she couldn’t remember my name or my sister’s. I only saw her become very agitated a few times, closer to the end. She passed––peacefully, thankfully––in Florida at the beginning of last year.
I thought about her recently as I watched the documentary Alive Inside. It is the story of Dan Cohen, founder of the nonprofit organization Music & Memory, and his quest to bring iPods into nursing homes nationwide as a form of personalized care for patients.
I remembered my grandma belting out golden-age jazz standards at the drop of a hat, and how once, while I was driving her home from dinner with the radio on, she tapped her finger along to the song, then looked me in the eye and said somewhat seriously “that’s what’s called ‘laying down a beat’”. Watching the movie, retroactive regret formed within me: I wish I had bought my grandmother an iPod.
Music & Memory
Dan Cohen has the accent of a New Yorker and the delivery to match: fast, bottom line-oriented, though not unfriendly. I get the sense he’s more pragmatic than overtly sentimental about the work he does.
“In 2006 I heard a journalist say iPods were ubiquitous,” Cohen tells me over the phone. “So I Googled ‘iPods and nursing homes’ and there are 16,000 nursing homes and nobody using iPods. From what I’ve seen of nursing homes in my life, it just doesn’t seem right. If I ever want to listen to my 60s music in a nursing home, will I be able to?”
Cohen is a social worker, but when he first brought personalized iPods into a Long Island nursing home that year, it was as a volunteer, in order to earn trust in his methods. Initially, he set up three residents with iPods full of their favorite music and watched as their suffering from a variety of ailments––depression, diabetes––receded while they listened. He eventually began working with residents suffering from dementia, where he saw the kind of dramatic results on display in the Alive Inside documentary: confused, agitated, and nearly immobile nursing home residents suddenly singing, dancing, smiling and crying to their favorite music.
“I would go to different nursing homes and say ‘Give me your most disruptive resident’. One of them was cursing at nurses all the time, knocking food and drinks out of their hands. He didn’t have any family, but we knew he was a veteran, so we made him a playlist of some patriotic music, and he immediately snapped to attention and started humming to the music, and that was it for his disruptive behavior.”
Dan volunteered for eighteen months before receiving additional funding from the Shelley and Donald Rubin Foundation to build his Music and Memory program. Donald Rubin had seen firsthand the effect music had on his own mother and her mood before she passed from Alzheimer’s. These funds enabled Dan to roll his program out to two hundred nursing home residents in four different New York nursing homes, and to demonstrate that the impact of this was repeatable.
“An initial complaint was: ‘Dan, you can’t do this, you’re going to isolate these residents even more–– with headphones, sitting in a dark corner…’ What we found, though, is that the thirty-three professional staff interviewed said ‘We had no instances of further isolation, but boy were they more social’. People were less agitated, more cooperative, more engaged, and in less pain, because perception of pain is often reduced when you’re engaged with music… Then I thought it was just a matter of getting attention.”
To help ensure the new program would get the right kind of attention, Cohen asked The Donald and Shelley Rubin Foundation for recommendations on a filmmaker.
“When I was trying to tell people about this, my friends said ‘Ah Dan, how nice, you’re bringing old people music’ and I said ‘No no, you don’t get it’. I couldn’t communicate the extraordinary impact. I thought ‘If only I could get someone to film a few minutes of this…’ That turned out to be the Henry clip.”
”The Henry Clip” is a now-viral video captured by filmmaker Michael Rossato-Bennett on his first day following Cohen. (This clip would be included in Rossato-Bennett’s Alive Inside.) “Henry” is the subject: a nearly-catatonic nursing home resident in his 90s, suffering from dementia. When Henry listens to his favorite gospel music, however, he sings, begins to move, and for a period afterward, reflects on the music and his remembered experiences in poignant––even poetic––terms. As neurologist and author Oliver Sacks comments during the video, Henry “has reacquired his identity through the power of music.”
Cohen was right: the power of stories like Henry’s were undeniable. Based on the clip of Henry alone, the Wisconsin State Department of Health called Cohen, asking how they could begin to implement a statewide iPod program for nursing homes.
Today, more than 1,000 nursing homes, assisted living facilities, hospices, hospitals, and home care programs actively participate in Music & Memory’s program to provide personalized music playlists to those they serve. In addition to Wisconsin, Utah and Ohio have made commitments to initiate statewide programs, with more states in the queue. In early 2013, The Alzheimer Society of Toronto began a Music and Memory project with the goal of bringing iPods to over 10,000 patients suffering from Alzheimer’s. Early evaluations of the project note decreased levels of agitation in patients and decreased levels of stress in caregivers.
“That’s still my challenge—just getting adoption,” Cohen says. “It’s going to happen. It’s just a matter of when people want to jump in. Because it works.”
Sounds of Science
iPod Shuffles in nursing homes may provide a new context for music as medicine, but music therapy is not a new idea. It was a popular form of treatment for soldiers returning home from both World Wars, and in fact, as recently as 2010, the U.S. Department of Veterans Affairs created its own music therapy program for veterans, documenting the results in a report titled “Guitars for Vets: Evaluating psychological outcome of a novel music therapy”.
The Guitars for Vets program recruited forty veterans with significant PTSD symptoms as subjects. Each subject received a guitar and an hour of individual musical training each week, as well as a weekly group instruction session. After the study, they kept their music, supplies and instructions. The study reported significant decreases in prominent PTSD symptoms, as well as overall decreases in symptoms of depression, and increases in health-related quality of life.