One image I will remember best from “It Is Not Over Yet,” a documentary about an innovative care center for people with dementia, is the place settings. They reminded me of the good work of the Little Brothers of the Poor and Elderly, who always bring a flower and a cloth napkin when they deliver meals to people in need, because they know that those they help deserve these small touches of grace to feed their spirits as well as their bodies. At the Danish home for people with memory loss called Dagmarsminde the table settings are festive and pretty, not like the utilitarian hospital-like food trays in many facilities. Founder May Bjerre Eiby tells a group that her first job was in such a facility, all drab colors and bad smells. She became a nurse, determined to do better, but as she was saving money to create Dagmarsminde her own father became a resident of the facility where she first worked. They left his meals in his room, not understanding that he could not feed himself. He died there, she says, from neglect.
No one is neglected at Dagmarsminde, where their building principle is that “compassion is medicine.” While the average number of medications for residents in assisted living is ten per day, at Dagmarsminde it is one. Instead of medication to dull their perception, or, as in the case of one new resident, medication still being prescribed long after its ability to affect the patient was exceeded, leaving only the side effects, the residents at Dagmarsminde get cake. They get attention. Most of all, they are listened to. Just because memory is fading does not mean that a person wants to feel isolated.
Like all homes for the elderly, residents die. And when they do, the staff makes an announcement, the coffin, decorated with flowers, is brought into the area where the residents gather, and they sing a song to bid their comrade farewell. Later in the movie we see the deeply compassionate “death watching,” as the staff stays near a dying woman, making sure she is reassured and comfortable.
This is a Frederic Wiseman-style documentary, observation without talking head experts or statistics. We might wonder, for example, what happens when they decide to take a new resident off of the three different morphine-based medications she is on, or how (as they say) they are able to provide this staff-intensive level of care without extra cost. It is impossible not to be touched by the devoted couple knowing they are nearing the end, satisfied that their lives were good and past caring about old hurts.
Those of us who have visited our own family in memory care facilities or struggled to care for them at home will not wonder whether this is a better, more humane, more loving way to treat people with dementia. We will wonder only whether, when our time comes, we can find a place like Dagmarsminde.
Parents should know that this film deals with aging, memory loss, and death. There is some alcohol and a reference to adultery.
Family discussion: If you could build a facility for memory loss patients, what would it be like? What can we do to make more places like Dagmarsminde available?
If you like this, try: “Young at Heart” and “I Remember Better When I Paint”
Rated PG-13 for some strong language, and thematic material
Some strong and crude language
Alcohol and medication
Date Released to Theaters:
March 10, 2021
The beginning of any story — a movie, a play, a book — is like a puzzle. We are hardly aware of all the information we are processing, all the clues we are parsing to let us know who the characters are, where they are, when they are, and what is going on between them. And so, in “The Father,” we quickly come to some conclusions about Anthony (pronounced “An-tony”), played by Sir Anthony Hopkins. His daughter Anne (Olivia Colman) visits him in his apartment to chide him about firing his latest caregiver, as he has her several predecessors, and tells him that he must find a way to get along with his next caregiver because she is leaving London to live with her new boyfriend in Paris.
And then the movie proceeds to undermine almost everything we think we have seen and we gradually realize that we are seeing the world subjectively, through Anthony’s eyes and ears and he is the most unreliable of story-tellers because he is struggling with dementia. Just as last year’s “The Sound of Metal” told us the story of a musician’s hearing loss by letting us hear what he heard, and not hear what he didn’t, “The Father” tells us the story of Anthony’s fading memory by filtering what we are seeing through his ability to process it, so we are as unsure and unsettled as he is.
Everything we bring to the film about forming judgments and drawing conclusions is constantly undermined. Anne is sometimes played by Colman, sometimes by Olivia Williams. Sometimes she is married, sometimes divorced. Sometimes it’s his apartment, sometimes he has moved in with Anne. Sometimes he stands in the hallway, disoriented and lost. Sometimes Anne’s husband barks angrily at him.
A new caregiver (Imogen Poots) comes for an interview and we see Anthony putting everything he has into being charming and capable. He tells her he was once a tap dancer. (He was not.) He offers her a drink and has one himself. He tells her she looks like his other daughter, the one he thinks is still alive (she is not).
Hopkins is made for this role. Only a man of his decades of experience and dedication to meticulously observed and fearlessly vulnerable performances could show us Anthony’s valiant efforts to stay himself, to stay in charge. That makes the final moments, when we are finally returned to our own safe space as objective observers, even more shattering.
Parents should know that this movie concerns dementia and he strain it puts on family as well as the person struggling with memory loss. It includes some strong language, alcohol, and medication.
Family discussion: Does this film make you think differently about what it is like to have memory loss? How are the people in your life helping those who are facing this issue and those who are caring for them?
If you like this, try: “Away from Her,” “Still Alice,” “Still Mine,” “Dick Johnson is Dead,” “The Roads Not Taken,” and “Supernova”
Interview: Kim Campbell on Caring for Glen Campbell and “I’ll Be Me”
Posted on September 4, 2015 at 12:07 pm
Glen Campbell…I’ll Be Me is a beautiful documentary about an ugly disease. Glen Campbell, one of the most popular and successful musical performers of all time, was diagnosed with Alzheimer’s disease in 2011. As memories, words, and some basic concepts about daily life became fragile and then disappeared entirely, the music stayed with him. And so, his family took him on one last performing tour. The audiences were understanding, applauding even when he forgot the words or repeated a song he had just played. But backed up by his children, he played brilliantly and he loved the audience and they loved him back. The documentary is the story of that tour, of how Alzheimer’s affected Campbell and his family, and, with commentary by friends and fellow musicians, about how all of our lives are touched by the tragedy of dementia and cognitive impairment.
Campbell’s wife Kim is in every way the heart of the film. Her loving spirit and devotion are deeply moving. It was a pleasure to speak to Kim about the film, which is Glen Campbell…I’ll Be Menow available on DVD.
What has it been like for you to see how audiences respond to this film?
It’s been amazing. Everywhere we go and show the film people are really moved. They feel like we’re telling their story and they feel like it’s bringing Alzheimer’s out of the shadows into the light and helping remove the stigma of this disease.
What is it about music that seems to be able to reach people with dementia even when words are failing?
From what the doctors told us, music involves all the different regions of your brain at the same time and everything is stimulated at once. It just seem to promote the health of the brain, to keep everything working. They say that it may have kept Glen from progressing as quickly as he otherwise might have had he not been playing music. It’s a natural memory aid. People have used music to memorize things for years, for centuries. I think when you hear songs from your past on the radio or something you remember everything, you remember where you were when you heard it and the smell of the ocean and colors and what you were wearing and it just seem to trigger everything to do with your memory for some reason. And it brings joy to people. And joy of course brings a sense of well-being. So it’s a good therapy for people. I think all the arts are. There is a video clip of Glen relating to color and singing while he is painting and it’s really beautiful. So I am a big advocate of all of the arts for people with dementia. Really for everybody, for caregivers too. The art is therapeutic.
How is Glen doing now?
In March of 2014 our family joined the Memory Support Community in Nashville and Glen began residing there but recently about a month ago I brought Glen back home so now I’m caring for him at home again. And it is extremely challenging, he’s at the point where he just need one-on-one care round-the-clock. And it’s such a joy to have him back, emotionally it’s much better for me but physically it’s really challenging, I don’t get much sleep. He still has moments when he can become combative. I’m sporting a black eye this week that I got just trying to change his pants. You know that’s a part of Alzheimer’s that people generally don’t talk about. Your desire is to protect someone’s dignity but I really don’t think it has anything to do with dignity; it’s a disease. And this is typical for all people who have Alzheimer’s. They can’t express themselves verbally anymore and they don’t understand what’s going on, if you are trying to bathe them or take their clothes off or something their natural instinct is to lash out. So it’s just something that you don’t talk about that I think needs to be out there so that people can understand the tremendous challenges it is to be a caregiver for someone who has dementia.
So what are you doing to try and takes care of yourself? You can’t take care of him unless you are in pretty good shape.
Well, I pray a lot and I’m so blessed to have our daughter Ashley and our son Shannon and our nephew, Matthew. They’ve all been a part of our care team for so many years and they’re still living at home with me and helping. So I have got family and friends around, so that’s really important because you don’t want to become isolated. So many people are isolated in a home with someone with Alzheimer’s and they don’t have any help or the moral support of having somebody else there to help you. But I exercise, I take ballet, and that’s very therapeutic for me. I think it’s really important to raise awareness about Alzheimer’s and educate people about Alzheimer’s and so I’m doing that. I recently did a real estate course to get my mind off of Alzheimer’s and learn something new because I am aging, too. I am 57 and for my brain health I need to keep learning. So that was really fun. And it helps to meet people that are going to the same thing that I am. I’ve met a lot of women around the country who have husbands that have Alzheimer’s. I think it’s really different thing to have a spouse with Alzheimer’s than with a parent who has Alzheimer’s, emotionally different and so to have those friends has really been a great support to me. And I don’t belong to formal support group but I believe that those are really important and people should seek those out in their communities. I’m just blessed that it kind of happened organically with me to meet people in the same situation around the country and connect with them we stay in touch and visit each other and talk on the phone about what we are going through. And I try to eat right, too, all the natural things.
The film really makes clear that while people with Alzheimer’s and their caregivers have a lot in common, there are some very big differences.
Right. The thing is if you see one person with Alzheimer’s you’ve seen one person with Alzheimer’s. It’s different for everybody but at the same time it’s similar for everybody. There are standard things that people generally go through. Not everybody becomes combative but many do. Not everybody goes through retrogenesis but many do. Glen hasn’t really regressed and started becoming a child but there are childlike things that he began to do like his fascination with color. That is kind of beautiful actually because the way they begin to look at the world is like a brand-new life. Glen would look at the sunset and just get so emotional about it, “That’s the most beautiful thing I’ve ever seen!” So you try to find beauty and joy in the obvious tragedy. It’s your brain dying and you’re losing your memory but there’s still beauty to be found and Glen still seem to recognize me and we love each other and hug each other and still there are moments when we really connect deeply, when we look into each other’s eyes. And for the longest time Glen still would say things like, “We are so blessed!” Or he would go over to the window and raise his hand and say, “Thank you heavenly father!”
So I knew that he still senses God’s presence and we’re still connected to God and that really gave me a lot of comfort. Now he has really progressed with his dysplasia so his ability to communicate verbally has diminished severely. He doesn’t understand anything anyone says to him but we still communicate with smiles and hugs. At least it’s so funny because he still has his personality to some extent that he’s always been an entertainer, and so even now he’s still telling you jokes. It may not make sense, the words don’t really relate to each other but he is telling a joke so he laughs and laughs and laughs hysterically which makes us laugh and that makes him happy. So we try to appreciate each day for what it is and we just love each other and try to make the best of a bad situation. What can you do?
Tell me about some of the support activities you are working on.
We’re also excited that the I’ll Be Me Alzheimer’s Fund will create programs that will lift the spirit of caregivers and also fund research. What we want to do is give an award to young scientists, give grant to somebody like gave Mayo Clinic or a place like Johns Hopkins to hire a young scientists and involve them in Alzheimer’s research because generally scientists doesn’t get involved in research until they are older. It’s really exciting. There are lots of great companies working as hard as they can to find their drug or therapies are hopefully a cure. So we’re hoping that that is going to speed up the process.
If somebody came to you and said, “We’ve just got the diagnosis and I don’t know where to turn,” what would be your first piece of advice?
You have to educate yourself. That’s the first thing and the Alzheimer’s Association is really helpful. That’s where I went to start learn about the disease and learn what kind of resources there are available to you. You have to build a support team around yourself. It’s important for the person who has Alzheimer’s to have that support and the caregiver needs support. You can’t do it on your own — it takes a team. I would advise them to not let it get you down, do what Glen did and keep living your life and not worry about it. Don’t worry about tomorrow. Jesus said, “Don’t worry about tomorrow, it has enough worries of its own.” And a cheerful heart is like a good medicine so keep yourself a healer, keep living your life. Educate yourself and surround with people that you love and who will support you. And be honest with people, because when you are honest with people and let them know what you’re going through that gives them permission to step in and help, it helps to remove the fear. I think people are afraid, “I don’t know how to relate to someone Alzheimer’s” and they just stop coming around because they are afraid that they will say the wrong thing. But if you talk openly about it, it helps them feel a bit more comfortable with you. And then you’ve got more support.
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.
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.
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.