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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Happy Anniversary of the First Moon Landing

Posted on July 20, 2014 at 3:26 pm

45 years ago today, Neil Armstrong became the first human to walk on the moon, a powerful reminder of what is possible if we put no limits on our goals “for all mankind.” I hope we never lose that sense of endless possibility, boundless curiosity, and the determination and courage to carry it through.

https://www.youtube.com/watch?v=keoF8YmTjWg

For more about the moon landing, I recommend For All Mankind, and what I consider the finest miniseries ever produced in America, Tom Hanks’ From the Earth to the Moon.

Interview: Director Steve James on the Roger Ebert Documentary “Life Itself”

Posted on July 5, 2014 at 3:32 pm

Roger Ebert said that Steve James’ documentary “Hoop Dreams” was the greatest film of the first decade of the 21st century. He wrote, “A film like “Hoop Dreams” is what the movies are for. It takes us, shakes us, and make us think in new ways about the world around us. It gives us the impression of having touched life itself.”

Those last two words became the title of Ebert’s autobiography. And when it came to make a documentary about Ebert’s life, James was the one Ebert wanted to make it. There were no restrictions or approvals from the subject. Ebert wanted his story told the way James thought best.

I spoke to James about making the film and the great loves of Ebert’s life.

Roger loved it when his friend Bill recited the last page of The Great Gatsby. Why was that so important to him?

I think Bill really nails it in the film so I’m just going to steal his thoughts on it. Number one it’s a great piece of writing and Roger loved novels. He probably loved novels as much as he loved movies.
In fact when he was younger, quite young he was one of those guys that had charted out his life. He was probably about 17 when he said, “OK, I’m going to be a newspaperman and then I’m going to be a political columnist then I’m going to move to New York to be a novelist.” He charted that out.

So literature meant the world to him and that passage meant a lot. But I think what Bill says in the movie is true. It’s that it was about a self-made man. Now in Gatsby’s case there was a lot of artifice there. It wasn’t with Roger but that notion that you can come from modest or nothing background and make something grand of yourself I think appealed to Roger as a small-town kid from Urbana who went on to the big city and sort of conquered the world in his own way but in an honest way. And then you know it’s about loss. I think Bill talks about in the movie about the loss of Roger’s father and death and the way in which death sort of haunted Roger. When he lost his father at that young age, it was not something he ever really got over according to Bill. Bill tells stories about other passages that he loved too that of course Bill committed to memory. He would quote something and then Roger would say, “Tell me again.” Or they would be at a dinner table and he would say, “Bill, give me the last page of Gatsby or this Yeats poem. And Bill is one of those guys that just commit a lot of great stuff to memory including a great editorial passage from when Roger was in college that is just remarkable.

He was a fully formed writer at the beginning as Bill says.

Yeah. I mean if I was a writer I would have hated this guy. I mean really hated them, just hated him. He wrote so well, plainly but with spiritedness and well chosen adjectives.

How did you find someone to do the narration who sounded so exactly like Roger?

Really I owe this to Chaz and her team. They were looking for someone to come in and read some of his great reviews, audio recordings. We had been for editing purposes using the book narrator. He did a perfectly good job but he didn’t sound anything like Roger. So we had been using him in editing because it’s convenient, but I knew I wanted to replace him and my thinking up until they found Stephen Stanton was that we would just find someone who kind of sounded like Roger but we weren’t going to try to channel the actual Roger. But then when she said, “We found this guy, you should hear him,” I was just like, “Oh my God!” And then my next concern though was, he was doing like a review on the show so it was kind of swashbuckling Roger and all that, it was kind of big and broad. So then I had him I reach out to him and had him read some of our narration passages that we had chosen that are much more intimate and he said, “Okay, I’ll do it but send me whatever kind of intimate recording.” So I sent him Roger’s Fresh Air interview with Terry Gross and we just sent him another interview that was done in Champaign with him where he was very relaxed and kind of speaking more quietly, more conversationally. He is not an impressionist; impressionist does not do him justice. He is an actor who can act in other people’s voices. He read the memoir himself before we did at the recordings. He listened to these tapes religiously and then he came in and he took directions like, I would say, “Oh, that was great but I feel like it could be even a little more private like we are just across the table together and you are speaking” and then he would boom! He was remarkable! He is so good that even though in the movie, in his voice, in doing Roger’s voice, he said, “When I lost my ability to speak…” there are a lot of smart people who say, “How did you get Roger to record it?” That irony of, “No way, that can’t be him,” just doesn’t even dawn on some people because they are just so immersed and that is what I wanted it to be. I did not want to fool you which is why I made sure you know if you are listening closely enough but on the other hand I want you to immediately forget it because it’s Roger’s words.

How do you as a filmmaker bring together several very distinct episodes in his life?

You could call it a three act, four act, or even five act life. He had a lot of adventures and he went to a lot of places in his life. He left a small town, he went to Chicago and became a newspaper man and fell into this job reviewing movies and then there was drinking and then he gave that up. Then there’s the TV show and then Gene’s dying and then the cancer and then the blogging. I mean it’s like there are so many aspects to Roger’s life. Plus he loved to go to the Cannes film Festival and he loved to go to the Conference on World Affairs and a lot more.

I felt like I wanted to use the present as a springboard to the past, something he does in a memoir in places which was really moving to me and so I wanted to do that. But otherwise when I do interviews, I do interviews with people for hours on end and we talked about a lot of stuff and not all that got in the movie but when you start to put the movie together, you start trying to identify what are the strongest strains in his life and I guess what I kind of came to realize is, and I did not realize this from the start but I came to realize that the film is kind of ultimately a series of love affairs. It’s a love affair with writing, it’s a love affair with movies, it’s a love affair even with Chicago of course. And then there’s Chaz.

And kind of like what all those love affairs add up to, in a weird way it is a love affair with Gene Siskel. It’s a torturous one but it’s a love affair. It’s like he had a series of love affairs but he was never not true to his wife. It all adds up to this kind of love affair with life. I mean he called the book Life Itself, not My Life and Movies or Me at the Movies. “Movie” is not in the title. It’s life itself that was the grand movie of his life, you know what I mean?

Was it hard for you to maintain objectivity as Roger became seriously ill?

I never worry about trying to maintain objectivity in that kind of journalistic way. Because like for instance I knew that this ultimately was going to be an admiring portrait of Roger Ebert because I wouldn’t have wanted to make it otherwise. I am not that kind of filmmaker. I want to be around people I am interested in. And so I knew that so it was never going to be objective in any kind of purely journalistic way. I did not go out of my way to find someone who hated Roger or something. But I went out of my way to find people critical of his contributions. I knew that I wanted it to be honest, though, and I think there is a difference between honest and objective. Honest is it may have a point of view and I feel like all my films do but I try not to make my point of view blow out of the water and eliminate anything that’s contrary to it, that’s contrary to who this person is or that there is other ways to look at this person. And so that was important. I mean when I saw how stubborn Roger could be with Chaz, I was a little surprised until I thought about it, “Well, you don’t get to be Roger Ebert and you don’t survive all he’s been through without being stubborn.” And I am not talking about just doing this; I’m talking about 20 years with Gene Siskel. You don’t get to be that way without having a stubborn streak in you. He had had a toughness about him that was essential to his success. He also had a generosity about him that everyone commented on that didn’t just happen late in life. Although he became even more generous, it was there all along.

In the film we hear filmmakers talk about how instrumental he was in helping them. How did he help you with “Hoop Dreams?”

First, he and Gene reviewed the film on the show when it was just going to Sundance. For them to even review it was remarkable because it had no distribution and it was three hours long and they knew that. And so they watched it and then they decided they were going to go on the show while it was at Sundance and they said something to the effect of, “You can only see this film if you are at the Sundance film Festival but we really feel that this film should be seen by a wider audience.” And they just sort of planted this flag. Sundance made an enormous difference because up until then, it was the three-hour documentary about two kids playing basketball that no one ever heard of and nobody was really going to see it. It was getting some buzz with the audiences a little bit but the distributors weren’t. And then suddenly, it was like we were a hot ticket at Sundance and we had ended up with three or four different offers and none of that would have happened without what they did, no way that would’ve happened even if they loved it.

And then over the years, Roger continued to write very thoughtfully about my work and support my work. Three years ago when “The Interrupters” came out, when it premiered at Sundance, we had sent a screener to him, just hoping that he would watch it. I don’t tweet but someone told me, “Roger just tweeted this wonderful thing about the film at Sundance.” He knew that we were premiering there; he knew exactly what he was doing. He had 800,000 Twitter followers; it was picked up, it was tweeted all around and then he continued to champion that film right up through the end of the year and was outraged when we did not get shortlisted for the Oscar. He was just such a supporter of my work. For me to be able to kind of do this film means a lot.

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Interview: Joe Berlinger of “Whitey: United States of America v. James J. Bulger”

Posted on July 5, 2014 at 8:00 am

Joe Berlinger is one of my favorite directors and it was a treat to talk to him about “Whitey: United States of America v. James J. Bulger,” his new documentary on the trial of the notorious gangster. We know Bulgar was a crook. What this movie explores is the manipulations and cover ups from the law enforcement that kept Bulgar from being prosecuted for decades.

If you had a chance to interview Whitey and he agreed to tell the truth, what would you ask him?

The most important question is the central assertion to his claim that he had on immunity deal with Jeremiah T. O’Sullivan and the reason that’s such an important question is it goes to the heart of whether or not he was an informant and if he was not an informant the level of corruption and abuse of our institutions of justice is like significant.

The film raises the question of how much crime you can allow an informant to commit to hold on to his credibility. Presumably killing is over that line.

David Boeri is a WBUR Reporter who says that as long as informants are the mother’s milk of criminal investigations we have to be really careful because on the one hand you they can’t blow their cover but it doesn’t mean they should be killing people with institutional knowledge because that puts the government in the position of picking and choosing who should live and who should die and that’s not the role of government. You know to empower the Irish mob so that they can bring down the Italian Mafia; there’s something inherently wrong with that. And it wasn’t just limited to Boston. We see the same thing in Gregory Scarpa’s cas. There’s no question he was a major informant there to bring down the Colombo Crime family and over 50 people were killed under his watch. There’s something wrong with that system. One of our bedrock principles of our legal system is a defendant should be able to present whatever vigorous defense he wants with the presumption of innocence. Again this is not a wrongful conviction cases, but the guy should have been able to present his point of view.

I love the line in the movie from one of the witnesses: “Of course I lied; I’m a criminal.” What do you do when everybody that’s testifying is a liar by definition?

The three star witnesses for the government are murderous thugs. I mean could you imagine somebody going up for trial for 20 murders and getting 12 years? He’s a serial killer and yet the government treats him as a star witness, now how is that guy incentivised? It’s what I love about the movies, it is a true Rashomon experience and yet the truth rises to the top and something stinks. The real story has been swept under the rug because it’s just implausible on so many levels that all that murder and mayhem and bad behavior is solely the responsibility of one relatively low level agent and his corrupt supervisor, it’s just not plausible.

I really want to know how truthful is the claim that he had a deal of protection and frankly it’s an important question that is the major disappointment that I had in observing the trial because that was a question that was not allowed to be aired. Even before the trial began, the judge ruled that the immunity claim was not allowed to be brought up in trial so that was disallowed as a line of inquiry. It’s a complicated question but he should have been allowed to bring that up at trial because it’s a central question to the saga and I was disappointed that the judge would not allow because I think it was pretty clear that no matter what happened at trial Whitey Bulger was not going to walk out of that preceding a free man. Right from the start he admitted to being a drug dealer and loan shark.

I was really interested in the comments on the file by the woman who’s an expert on informants. Normally when someone gets immunity, isn’t that very well documented?

Well there are two levels, if there was a personal deal of protection like, “Hey, keep me from getting bumped off from the mob and I’ll keep you from being indicted”. That’s not going to be documented. That’s a personal deal of protection. There were were all these hallmarks of a fake file and in civil proceedings and in the proceedings against Connolly the government acknowledged that much of that informant file was faked by John Connolly. You can’t have it both ways. If you’re going to say you faked the files in the proceedings against Connolly then let’s talk about where is the real file if he was an informant? And there are just so many things that don’t hold water. Again I don’t know whether he was or wasn’t but something stinks. If he was an informant then there’s some basic protocol that wasn’t being followed by like targeting the head of the gang, he was the head of the gang.

The first person we see in the film is a man who was threatened by Bulgar and is looking forward to testifying against him. But he was murdered before he could appear in court. At the end, the film tells us the murder was unrelated. Really?

I can see it’s a legitimate coincidence but to me the importance of it is that when Rick’s body was discovered on the news and that rippled through the courtroom, everyone — reporters, observers, family members — all were debating, almost like as if they were debating a horse race or a Red Sox game, they were debating with equal plausibility whether or not it was in the government interest to knock him off or in Bulger’s interest to knock him off. I was just kind of stunned by the fact that the government was even considered a possibility, which is demonstrative of the complete erosion of faith in their institutions that they would actually believe they might have a hand in it. That demonstrates why this trial should not have been so narrowly focus on confirming the obvious. The obvious is okay he’s crook, we know it let’s let Bulger talk about whatever he wanted to talk about.

This story has so many people and so many incidents and so many boundaries being crossed, how do you try to help people keep that straight? How do you address that is a filmmaker?

It’s a very challenging story and in addition to that there’s a certain subtlety that I hope the audience gets. I was very conscious that there is a certain amount of the conventional story that you need to tell to set the table and then you have to start picking that conventional story apart and do it in kind of a seamless way. I was so worried that some people would walk thinking, there’s no problem with the conventional story. So the challenge is you start with what everyone says is the truth and then you start showing what the issues are with while still maintaining that that’s still a possibility. You know, people expect to be told what to think and many filmmakers believe you have to have a very singular point of view. I’ve always in all of my work tried to embrace multiple points of view and then hope that the truth rises to the top. And look, I do want to say for the record I don’t think everyone in law enforcement or everyone in the FBI is rotten. I think the majority of people in law enforcement and the majority of people who are in persecution take their job seriously. And actually I think Wyshock and Kelly are the heroes of this story on a certain level because they came to town in the early 90s being sent from other places said, “what the **** is this?” And against the will of their own Justice Department they were fighting vociferously to bring about those indictments, the indictments that ultimately led to this proceeding. They fought tooth and nail for those against their institutions but at a certain point at this trial they now were put in the position of defending the institution that they once fought against in order to bring these indictments. And you can’t serve two masters; you can’t defend an institution that screwed up while you’re simultaneously trying to get to the root of the problem.

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Life Itself

Posted on July 3, 2014 at 6:00 pm

Lowest Recommended Age:	High School
MPAA Rating:	Rated R for brief sexual images/nudity and language
Profanity:	Some strong language
Alcohol/ Drugs:	References to drinking and alcohol abuse
Violence/ Scariness:	Scenes of illness, sad death
Diversity Issues:	Diverse characters
Date Released to Theaters:	July 4, 2014

Roger Ebert, the most influential film critic of all time, gets the film he deserves directed by one of the many filmmakers he championed, Steve James (“Hoop Dreams,” “The Interrupters”). It is co-produced by Martin Scorsese, whose emotional appearance in the film to talk about the impact of the support—and criticism—he received from Ebert is one of the highlights.

But this is not the story of a movie critic. It is the story of a life, a big, grand, messy, vital, generous life. It was a life with every bit as much drama, comedy, tension, romance, insight, compassion, and, as Ebert would say, civilizing influence and empathy creation as any of the films included in Roger’s pantheon of Great Movies.

The film shows us Ebert as a child in the university town of Urbana, Illinois, as a college student there, as a young newsman who, still in his 20’s, became the movie critic for the Chicago Sun-Times, and later a pioneering presence on television and online. He drank too much until he admitted that he was an alcoholic. He and Chicago Tribune critic Gene Siskel created a television show that began on the local PBS channel, WTTW, and then went into national syndication and moved to commercial television. While some print critics complained that it was stunt-ish, the show elevated serious engagement with movies to a nationwide conversation. A highlight of the film is the testy outtakes from the show, making it clear that the competitiveness and tinge of animosity that made their on-screen interactions so fascinating were toned down from the real strains between them. And it turns out Siskel hung out with Hugh Hefner at the Playboy Mansion during the wild era of the 60’s. “Roger may have written ‘Beyond the Valley of the Dolls,’ but Gene lived it,” Siskel’s widow says with a smile.

The intensity of the competition between the two critics is very funny. So are the outrageously awful clothes and haircuts (there are some things even the ’70s does not excuse) and the amateurishness of the early episodes. But the very real respect and, ultimately, admiration, between them makes it clear that this was one of the most significant relationships of Roger’s life. It was his devastation over Siskel’s decision not to tell anyone about his own illness that made Roger resolve to be very open and honest about his own.

Ebert had great hungers, which led to excesses, not just in alcohol and food but in work, producing more reviews and books than any other critic and dabbling as a screenwriter in the legendarily awful “Beyond the Valley of the Dolls.” Once he stopped drinking, he developed the courage to pursue his greatest hunger, the hunger for love and intimacy. The man who called movies “an empathy machine” was ready, at age 50, to begin to feel those feelings outside of the screening room. It is deeply moving to witness Ebert’s transformation through his finding a deep romantic love and a large extended family at age 50 with Chaz. And then he got cancer, and we see the impact his illness had on his writing. He lost a great deal, but, James shows us, he found more.

Roger loved movies deeply, personally, viscerally. With this documentary, the movies return that love.

Parents should know that this movie includes scenes of illness and a sad death, some strong languages, discussions of alcohol abuse and alcoholism, smoking, and some sexual references and images from movies with adult material.

Family discussion: What were the most important turning points in Ebert’s life? Do you agree that film is an “empathy machine?”

If you like this, try: Roger Ebert’s books and his mesmerizing shot-by-shot commentary on Citizen Kane

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