The winner of the Audience Award at the 2014 Sundance Film Festival, Michael Rossato-Bennet’s incredibly moving documentary Alive Inside explores how music can re-awaken the souls of even those people we thought were lost to us because of Alzheimer’s and other forms of dementia. The film follows social worker Dan Cohen as he fights against our broken healthcare system to demonstrate music’s ability to combat memory loss and return a deep sense of self to those suffering from it. Through illuminating conversations with experts such as renowned neurologist Oliver Sacks and musician Bobby McFerrin, and astonishing experiences with patients around the country, revitalized by their love of music, Rossato-Bennet has crafted an intensely uplifting cinematic experience that sweeps audiences up in its inspirational and moving story.
You may have seen the astounding viral video that features one of the subjects of the film — an elderly man with dementia who lived slumped over in his chair with very little memories of his past — until the music from his life completely changes him.
I spoke with director Michael Rossato-Bennet and social worker Dan Cohen about this exciting documentary.
Danny Miller: I honestly can’t remember the last time I cried this much while watching a film. This story hits every nerve — I think we all have some elderly people in our lives who might be helped immeasurably by this technique. Do you think this approach will eventually be used wherever there are people suffering from memory loss?
Dan Cohen: Yes, it will get there. It has to because it works — so much better than the solution that they’re using today which is to drug people. The reality is that if this were in the form of a pill that was generating this type of response, every doctor in the country would be prescribing it — it would go much faster.
Because then there would be a huge amount of money involved and the drug companies would jump on it
Boom — there would instantly be thousands of salespeople, but this is not a solution that requires or generates money. But the reluctance is not just because of greed — we tend to medicalize everything in this country — if there’s a pill, we’ll take it no matter what the side effects are. But if it’s a non-pharmological approach? That can’t be real!
It’s the same with children with behavioral problems — the first instinct these days is to medicate them.
Michael Rossato-Bennet: That’s something that really irks me. Just think about the insanity of giving such powerful medicine to children almost indiscriminately while their brains are developing. We tell them not to smoke marijuana but we pump them full of Ritalin and other drugs which is crazy. And you can take that same analogy and go to the end of life. We have all of these people who are have lived beautiful, phenomenal, connected lives and suddenly they’re taken out of everything they know and put into isolation. They’re literally being treated like objects so they begin to fade and disappear. But now we’re learning that if you take a human being who is suffering because they’re being treated that way and return to them something of their central core — that thing that never leaves us until the very end, our capacity to experience music — you see how they are suddenly revitalized.
And it seems so much more effective than just prescribing drugs and more drugs.
It’s not a solution at the end of life to have 20 percent of nursing home residents on anti-psychotic medications just to keep them quiet. These medicines have tremendous side effects. As Dan said, the use of this approach is inevitable because it works. Coler-Goldwater, one of the biggest nursing homes in New York City, did a study over three years that reduced their use of anti-psychotics from 38 to 13 percent. That’s an enormous efficacy. The drugs that are currently being used for Alzheimer’s have an efficacy that is just slightly higher than a placebo. And yet we beg for them.
Have you had any pushback about the film from the big drug companies?
Dan: Not at all, they love it. One of the big companies even ran their own iPod drive for nursing home residents. It’s up to all of us to make this more widespread.
Michael: We didn’t invent any of this. Music therapists have been doing this for decades — music is the number one recreational activity in nursing homes. But what Dan is doing that is revolutionary is giving people back the specific music that lives inside of them. We’re going to do a whole educational outreach with the film taking it into schools, into universities, into churches and synagogues.
I can see how great it would be to also do this with people who are not suffering from dementia.
Absolutely. Close your eyes right now and go back to when you were 15 or 16 years old. Now pick one piece of music that you used to listen to…
Got it.
Okay, can you see the room you were in?
Yeah.
Are you alone or are there other people around?
I’m seeing an old friend of mine.
Okay, now look at how you’re experiencing the scene — are you an adult or are you that person you were back then?
I’m the age I was then.
That’s it! Do you see how powerful those memories are? They live in Technicolor inside of you and they are always accessible — all the way to the end of your life!
I know you touch on the science of this in the film, but is it specifically because those songs are connected to our emotions and it just imprints in a different way?
Yes, this is what we’ve learned. We are not just our logical selves, we are not just our personalities or our short-term memories. There is a whole other system that is alive in all of us — our emotional system, and music imprints onto those primal parts of our being and stays with us to the end.
I guess it’s similar to how we experience certain smells.
Exactly, those are just as powerful, but, of course much harder to bring to people in this way and less communally shared.
I assume this technique doesn’t always work. I know someone who has frontotemporal dementia and he no longer has the ability to recognize music even though it was once a very important part of his life.
Dan: It doesn’t work all the time. There may be multiple things going on — people may be hard of hearing, the brains may be too far atrophied, we don’t always know what their past relationship to music was — but it works generally for most people with dementia.
There are so many amazing stories in the film. I was so moved by that woman, Nell, who was still living at home with her husband.
Michael: That is an incredible story. Norman has taken care of Nell for 10 years without drugs. She literally listens to eight hours of music a day.
I can’t imagine anyone seeing this film and not thinking about how they can use aspects of this technique with their loved ones.
You don’t know how many people we’ve met who’ve seen the film and came up to us to say, “Oh my God, if only I had thought of this before it was too late with my parents!” I remember one person recently who was so sad she never thought of it. Her dad who had been a concert pianist was in a nursing home and she herself was a concert violinist but she never thought to bring his music to him there.
Dan, I understand your organization Music & Memory is helping nursing homes and other facilities with this?
Dan: Yes, I train nursing home staffs how to implement this. I do a lot of webinars. In a lot of places administrators get worried: “We have enough problems with hearing aids disappearing and dentures, we don’t need to start worrying about iPods!” And they also worry about the time involved but the truth is that this approach ends up saving them so much time because instead of dealing with residents who are frequently agitated, you just give them their music 10 minutes before bathing them and their “resistance to care,” as they call it, is greatly lessened. All of their transitions of daily living become so much easier and that’s a big win for everyone. It does take some time and effort to set up the playlists, to contact families, and get volunteers involved, but everyone who’s tried it say that it’s worth it because the outcomes are huge. The families love this.
I assume most audiences have very emotional reactions to the film like I did?
Yes! This movie is magic in how reaches right into people. Some people hear that it’s about people with Alzheimer’s and they worry it’s going to be depressing, but it really isn’t.
It’s the opposite of depressing.
It’s inspirational. At Sundance we had five screenings and people were fighting to get in. One person snuck in and at the end of the Q&A she said she was responsible for about 100 nursing homes in Utah and that they will now do this. That was January and now I’ve trained most of the nursing homes staffs and they got funding so that every person in every nursing home in Utah will have their own iPod with personalized music.
That’s great. You know what’s weird: the huge Marvel movie opening this weekend, Guardians of the Galaxy, has a subplot that is related to this. A young boy on Earth is abducted by aliens in the 1980s and the only thing he has with him is his Walkman with a mixed tape that his dying mother made for him of all her favorite songs from the 1970s. Thirty years later, we see him traveling all over the galaxy with this Walkman that still brings him right back to those childhood emotions.
That’s a connection I never expected! You know, if people go to my website, there’s a free resource guide that explains very simply how to create a personalized playlist for your loved ones. People can just download that and be off and running.
Michael: The ramifications of this technique are so enormous. The Alzheimer’s population is expected to double within the next 15 years. If this technique can be used at home to reduce people’s agitation and keep them at home longer, the savings to our society will be in the billions.