Interview: Dan Cohen of “Alive Inside”

Posted on July 26, 2014 at 8:00 am

Dan Cohen is the gifted and passionately committed man who transforms the lives of people with dementia and other severely debilitating diseases. He is featured in the documentary “Alive Inside.” He is the founder of Music and Memory, which provides resources to help bring these programs to people with dementia.

How did you get started playing personal music for nursing home residents?

I’m a social worker by training. In 2006 I heard a journalist on the radio talking about how Ipods are everywhere. I Googled “Ipod in nursing homes” and even though there were 16,000 nursing homes in the US I couldn’t find one that was using Ipods for their residents. So I called up a nearby county-owned nursing home, and I said, “I know music is already your number one activity, you have live music, you play recorded music but what would be the added value if we were to totally personalize the music? And they said, “Sure.” So I sent them a laptop and some Ipods for the residence.

How do you personalize music for somebody who has lost so much memory that they can’t tell you a lot about who they are?

They can tell you nothing about who they are or what they like. So this is where if the family is available, we’ll speak to family. We’ll speak to friends, whoever is visiting. What did they listen to when they were young? Did they sing in choirs? Did they go to musicals? Did they play an instrument? Are there old records sitting in storage somewhere that we could look at? We really try to discover what that might be. We try for music from when they were young then we watch for their reaction to the songs. So build out a list based on their reaction to the songs.

Is it very important to personalize it to the individual’s experience?

That is exactly what is special about it, so back to Dr. Allen Power, who wrote Dementia Beyond Drugs: Changing the Culture of Care. He’s a geriatrician and a leader on how things should be in the nursing homes. He says that the typical nursing home facility is playing that 50s songs and it just becomes background noise. For the rest of us, everybody has their devices, and what do we put on? We put on what we really want to hear and that’s what we listen to.

We have that ability but these folks in nursing home are in like a digital isolation from the modern age and of course it takes technology to make this happen. But with music that is personalized, if somebody has advanced dementia and they can’t recognize their own family members and they can’t speak, if you give them music that has personal meaning for them they will awaken. Even with Alzheimers where you have short term cognition that is seriously degraded, your emotional system is very much intact. So you can say to somebody. “I’m here this is your daughter” and they do not react. But once you put on something, “God bless America,” Frank Sinatra or whatever, they will awaken literally as Henry did in the movie and start reminiscing and start being more social instead of just being in a slump and non-verbal.

One woman seems to indicate that the music connects her to memories she cannot access without it.

As you could see she had a lot of angst and it was really difficult to get through the day, and so this just allowed her to be herself, enjoy herself and that was huge for her. And that’s a massive benefit. That really changes their day. And it changes the way they interact with the family.

What kind of neurological research is being done on this kind of therapy?

There have been hundreds of studies over the last 50 years. Most of them have a really small sample size but the one study that I base this on, one piece of it, is research by Linda Gerdner on the impact of individualized music to reduce agitation. And it was so good; her research said that every one of the 16,000 nursing homes in New York should be using individualized music to reduce these agitations. But there is no money behind it, no requirement to do it so how do you do this anyway?

Dr. Concetta M. Tomaino who co-founded the institute for music and neurological research with Oliver Sacks, was with the New York State Department of Health funding in the 90s that did research on working on individuals with late stage dementia and playing music that personally related to them for an hour three days a week and repeated this three hour routine for 10 months. And after 10 months, these folks scored 25 percent better on the cognitive test. And then the neurologists who are brought in to assess by looking at these folks, how advanced the dementia was, they were unable to accurately assess how advanced the dementia was because these folks were uncharacteristically awake and alert instead of just head-down slumping.

If somebody came up with a pill and said, “After 10 months of taking this pill, your mom’s cognition is going to improve on average by 50 percent” well, it would be a multibillion-dollar blockbuster and every doctor would be prescribing it and every family would say, “I want it.” But because it’s not coming in the form of a pill, and we have medicalized our society, we are very much left with just word-of-mouth. We now have about 16,000 nursing homes and it’s just the living and hospice and home care and hospitals adult day care all using this in 45 states in eight countries. And then they see their benefits and then they tell everyone else in the community and that is how it this thing spreads because they are seeing it work.

Wisconsin rolled out 100 nursing homes with this six months ago. They are doing an 18 month study with 1500 residents with dementia. While they are waiting for their final results from this 18 month study, they already got funding approved to roll out a phase two, 150 nursing homes.

Have you been surprised at all by some of the musical choices that have had the biggest impact?

It really runs the gamut. It could be something their mom listened to when they were young and it was her song from the old country. Even though two people could be very similar in age, religion, culture and they have some overlap as a result of that, every playlist is like a fingerprint. That’s the hardest part sometimes to find that. But once you have that, you have it for this individual for the rest of your life and it will change their experience and the experience of their caregivers. My recommendation is to train all these nursing homes to have as large a playlist as possible no matter how advanced the dementia is.

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Interview: Michael Rossato-Bennett of “Alive Inside”

Posted on July 23, 2014 at 3:58 pm

Michael Rossato-Bennett agreed to spend one day filming Dan Cohen’s remarkable music therapy work with people struggling with dementia. He ended up spending three years there and the result is “Alive Inside,” an extraordinary documentary about the power of music to reach the human spirit, even when words and memories are gone. And it is also about the devotion of those who care for these people, those who work so hard to reach what seems unreachable. He spoke to me about making the film and about the work that is being done to expand these programs.

What is it that makes this film so powerful?

It’s so profoundly touching. People that are gone in one part of their being and yet absolutely profound in another. And that’s why I think this is a film that is meant to be seen with other people. I think by accident I’ve shown something that no one has ever seen before. These are people who don’t have any of their personalities, any of their memory, of their mind, they’ve basically lost the ability to lie. So you just see these pure human souls. And these pure souls are living in a world where they’re basically starving for the stuff that makes people alive, connection and music.

And then we brought the one-two punch, we brought music and we brought us. And we said, “Show us who you are. Listen to this music from when you were young and we are going to be here and watch you.” And these people just were like, “Oh my God! This is the music of my soul and you are here with me!” And they woke up. And to experience another person waking is an odd and indescribable experience. Like when you see your child take its first step or see your baby crying, there’s nothing you can do it just cuts into the core of your heart. We are showing people who are lost to themselves and lost to the world and then giving them this miraculous elixir of life that’s called music. And to see them discover the core of what they are and have that bloom in front of our eyes is a gift because that’s who we are, you and I, we’re not like our jobs, that’s not the people we are. That’s what we do to make a living or whatever but the people we are, are the people who deeply love. You know, in the moment of our deepest love, that’s who we are and those are the things that when you go into yourself and say, who am I? What am I? Those are the things that are real and you just sit there and resonate. And I think music is the perfect vehicle to awaken that for all of us. Anyway this is just a huge opportunity to make a difference for a sleeping population and heal ourselves in the process. And I think we’re in desperate need of healing as a people and that’s perhaps why this movie is getting such a good reaction.

As a filmmaker, you had this great gift of the look of coming alive on people’s faces when they heard the music. You also had archival footage. Was that real film of these people or was it just intended to evoke the feeling of their pasts and their memories?

It’s a mixture of both. Some is their home movies and some of it was footage that we found that describes moments that we were told happened in their lives. So it’s either their actual footage from their life or it’s illustration of things we were told about them.

This film made me conscious of my own memory. I remember one day just walking around in total awe looking at all the people around me, all these elders in these nursing homes and I realize that inside each one of them, that they play for themselves, that is a kind of movie of them with their wives and their kids or their dogs or their friends. It kind of overwhelmed me this idea that we all have a movie playing in our heads.

You had some people in the movie were dealing with diseases other than dementia. Tell me a little bit about what the music therapy can do for other kinds of illnesses.

Music therapists have known about the power of music for years. This environment is to some degree a desert of the soul. Steve was a man with multiple sclerosis. All he can do is speak listen. I was literally aghast that no one thought to bring him his music in eight years since he was first hospitalized. If that’s the case, what are we thinking? We certainly need to rethink what we’re doing especially when it had such a profound effect on him.

Music is one of the most profound human creations that we’ve got and its wisdom is phenomenal. I personally believe that music is a precursor to religion. Together we existed in community in rhythm and melody, it thought is that we are together and that we are one and that we vibrate and that the world vibrates. It’s a preverbal expression of everything good we’ve ever expressed.

It’s actually very sad about our state of music right now; you know all music today is quantitized. It means computers put it on micro beats so it doesn’t have human beats. It’s like robot music. And a majority of the artists are now auto-tuning their voices. It is pretty, but it is less human. It’s like Photoshopping for the ears.

Has working on this film affected your thoughts about your own music?

I never liked the music of the 40’s or 50’s but now I just listen to it through their ears. It literally brings tears to my eyes. I’m building an app to be a tool for young people. So that a young person could interface with an elder and help them find their music but at the same time get to hear. So these young people will get to hear this phenomenally profound music, like the music of the Andrews Sisters or Louis Armstrong or Nessun Dorma by Pavarotti. I think that’s one of the pinnacles of human music.

https://www.youtube.com/watch?v=TOfC9LfR3PI

What do you want this movie to accomplish?

What I really want this film to do is to inspire people to create connection. I see this world as a place going more and more individualistic, creating divisions and isolation in many people’s life. We are more connected than ever now with all these phones and everything but we’re not really connected and we’re tweeting each other and Facebooking each other but are we really connecting? How profound are we emotionally? How profound are we musically? How profound are we as dancers? These things are being discarded. I get it that we are moving forward and we are discovering new things you we can’t get there from here and we will become different beings. We have always evolved but we spent half a million years creating music and I think it has lessons for us.

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