Bringing Someone With Dementia Back to Life

When New York filmmaker Michael Rossato-Bennett first set out to shoot some short web videos for the Music & Memory organization's website, he never could have imagined what they’d become — a deeply moving documentary, Alive Inside: A Story of Music & Memory, that won the 2014 Sundance Film Festival Audience Award. The film is fueling a movement that’s changing the lives of millions of people with dementia and society’s views of old age.

The primary goal of the Music & Memory enterprise is to give nursing home staff and other caregivers digital music devices loaded with personalized music — selections tailored to individual preferences, which can stimulate the brains of people in their care, boosting memory, functionality and mood.

Music and Identity

Multiple scientific studies confirm music’s power to achieve the nonprofit’s objective, most especially the songs and compositions a person listened to during the primary identity-forming years, ages 16 to 21.

“Music connects people with who they have been, who they are and their lives,” says Dan Cohen, Music & Memory’s founder and Executive Director, “because what happens when you get old is all the things you’re familiar with, your identity, they’re all just being peeled away.”

What Rossato-Bennett encountered at his first film site — a large nursing home — is a case in point. “I was walking through the hallways with my equipment and it was just such a sad state of affairs, wheelchair after wheelchair lined up," he says. These people were just sort of lost….they just weren’t there.”

(MORE: What New Websites Can Tell Us About Nursing Homes)

Coming Alive

Not long after Rossato-Bennett arrived, he began filming Henry, an elderly man who would sit for hours at a time with his head down. A nursing home caregiver told Cohen what kind of music she thought Henry might like — gospel songs (because he would occasionally quote Bible verses) and the energetic scat singing of Cab Calloway.

“We placed the earphones on the head of this man with dementia and he just sort of sparked,” says Rossato-Bennett. “His mind and heart literally came awake. I started to cry. And when we took the headphones off, Henry began to speak and sing. He was a beautiful singer and an incredible poet. I just thought that this was the most profound illustration of how much more is inside of us than we think. We look at these elders and we think of them as gone and useless. And if you ever see a human being get what they want, it really touches you. Literally, on the first day, in the first moment of filming I decided ‘I’m going to do this. This is a documentary.’"

Rossato-Bennett proceeded to follow Cohen for the next three years, charting the extraordinary impact of his work as well as the many barriers he confronted in trying to bring personalized music to nursing home residents.

The filmmaker grappled with big challenges of his own. “I asked myself: ‘How do I tell a story about death, dying, Alzheimers and nursing homes, the things that people hate, are terrified of, that are literally the boogeymen of our times?'"

He decided that he would narrate the documentary himself and “go deep, go to the most primal human vibration. I thought if I stay with that I can never betray anyone,” he says. The vibration he’s referring to is music. In the film, Rossato-Bennett explains that we start developing a relationship with music just 22 days after conception, when the first cells of our hearts start pulsing with a defined rhythm.

Casting Light on a World of Possibility

After witnessing Henry’s awakening, Rossato-Bennett saw many others recover deep-seated, happy memories — people inside nursing homes suffering from dementia, schizophrenia and multiple sclerosis as well as individuals still living in their own homes and dealing with progressive cognitive decline.

The film poignantly captures the distress Alzheimer’s patient Marylou feels as memory and functionality slip away. But when she puts on earphones plugged into an iPod loaded with music she loves, she begins dancing around the room. “It can’t get away from me if I’m in this place,” Marylou says, tears rolling down her face.

Alive Inside’s depictions of music’s power to restore joy and vitality in those who have been given up for lost is stunning.

The documentary also elucidates the relevant brain science with comments from renowned experts in the fields of medicine, elder care and music. Prominent neurologist and writer, Dr. Oliver Sacks, talks about music’s capacity to activate more parts of the brain than any other stimulus. Singer-conductor Bobby McFerrin demonstrates just how innately wired for music we are via a charming audience-engagement exercise in which participants successfully anticipate notes.

Despite the bold depictions of music’s transformative qualities, Rossato-Bennett is careful not to overstate its healing powers.

This is not a cure for dementia, he says. "But if we give people their ‘Alive Inside’ music when they’re diagnosed, we can probably delay by at least six months millions of people going into these facilities," says Rossato-Bennett. "And if we do that, we can save hundreds of billions of dollars for society.” He also hopes that this strategy can help more people age in place.

Cohen’s main battleground, however, is the nursing home. The nation has 16,000 of them and his goal is to make personalized music a standard of care in every one of them.

Overhauling Nursing Home Culture

Although the film casts caregivers as loving, tender and devoted, it indicts the nursing home environment and its standard treatments. The hospital culture of large institutions often regards residents more as patients requiring sedation than as human beings with a rich interior life and a history of connection and contribution.

“This is solitary confinement,” says Naomi Feil in the documentary. She founded the Validation Training Institute, a nonprofit dedicated to communicating with and helping disoriented very old people. “So people close their eyes and withdraw inward more and more….After awhile, people just become living dead people. They go into vegetation. And this does not have to be.”

The film explores personalized music as a viable alternative to the burgeoning use of antipsychotic drugs used to tamp down patient agitation in nursing homes, noting that the medications were not designed for dementia and have dangerous side effects. Dr. Bill Thomas, a prominent geriatrician, says that while “we have medicines that can adjust the dials, we haven’t done anything, medically speaking, to touch the heart and soul of a patient.”

(MORE: A Revolution in Life Beyond Adulthood)

Dr. Peter Davis, Director of Medical Research at Albert Einstein College and a developer of Aricept, a dementia drug, underscores music’s ability to do just that. He says that in his 38 years of working on Alzheimer’s, “I haven’t done anything for patients that’s as effective as the music therapy is. I wish I had, and I’m still trying, but I really haven’t seen anything as positive as that.”

But changing conventional practices at nursing homes proved to be a huge obstacle for Cohen.

The managers of these institutions were initially quite resistant to adopting the personalized music approach. In the film, we hear them claim to have no budget for it. Securing donations from corporations that could help Cohen secure iPods and music downloads for his mission also proved to be a trial; one tech company tells him it has no policy regarding corporate philanthropy.

However, over time, Cohen’s doggedness pays off. By the end of the film, we learn that Music & Memory programs have made their way into 424 nursing homes in 36 states and seven countries. The organization is also making headway in reducing the use of antipsychotic medications.

Pinning Down Music That Works Best

The task of determining a nursing home resident’s favorite music can be difficult, though. Many occupants can no longer communicate what they enjoy and don’t receive visitors. To make the discovery process easier, Rossato-Bennett is creating an app that can help anyone round up the music that was popular during an older person's formative years.

(MORE: The Surprising Health Benefits of Sound)

He’s also aiming to enlist our youth in the personalized music movement and shift their views about old age.

“This will let a young person give a gift to someone that will last a long, long time,” says Rossato-Bennett. Toward the end of the film, we see a group of young people watching a clip of Henry that went viral, then volunteering to bring personalized music to nursing home residents — along with a healthy dose of reverence, respect and attention.

The Path Ahead

Alive Inside will be released theatrically in the late summer or early fall, when it's sure to fire up audiences. “One thing I didn’t realize going into this is how many people are connected to the issue of aging, nursing homes and dementia,” says Rossato-Bennett.

Shocking statistics bear out the director’s point: More than 5 million Americans now have Alzheimer's Disease. By 2050, nearly 14 million Americans could be living with it.

“This whole question of elders in our culture cuts to the quick of how we define life or living,” says Rossato-Bennett. “We really need to rethink on a human level what life is and what a good life is.”

If he has his way, we’ll start the process by asking one very simple question: What is your favorite song?  

To be apprised of Alive Inside screenings and special events, sign up for the Alive Inside email list at www.aliveinside.us. Send specific questions and requests to [email protected]. Specialized training in using personalized music in caregiving settings is available through the Music & Memory Certification Program. For more information about how to find music for elders and to support Dan Cohen's mission, visit www.musicandmemory.org.