Interview: Dan Cohen of “Alive Inside”

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.