Let me start by saying, if you haven’t seen Alive Inside, please do. I saw it first a few months ago and have been watching it again as part of the training for a music activity program I am working on with Copenhagen Living Lab.

This film touches on many of the things that I love about working with people with dementia and their families. You provide the highest quality care by knowing the person and learning to listen to them guide you towards what they need. I felt my own heart in this film. I laughed, I cried, I was inspired. It’s an excellent documentary and definitely recommended!

From IMDB:

The documentary follows social worker Dan Cohen, founder of the nonprofit organization Music & Memory, as he fights against a broken health-care system to demonstrate music’s ability to combat memory loss and restore a deep sense of self to those suffering from it. Rossato-Bennett visits family members who have witnessed the miraculous effects of personalized music on their loved ones, and offers illuminating interviews with experts including renowned neurologist and best-selling author Oliver Sacks (Musicophilia: Tales of Music and the Brain) and musician Bobby McFerrin (“Don’t Worry, Be Happy”).

Dan Cohen starts by going into nursing homes with iPods. He talks with the residents, staff, and family members to get a personal history of the residents. From this personal history, he finds music that is meaningful to them and their life story. Then he goes back and plays their personalized music for them. Their reactions are awesome in the very sense of the word – extremely impressive and inspiring awe! Individuals who were previously “locked in” their own bodies, fairly non-responsive, and speak only a few words start talking and sharing their experiences and emotions after listening to their music.

Check out this video showing Henry before and after his music:

This documentary is deeply touching. It brought me to tears several times. In particular, there is one scene where a husband and wife are listening to Frankie Valli’s “Can’t Take My Eyes Off You,” singing along, and then the husband (with dementia) says to his wife, “it hasn’t been easy for you. I love you.” This scene gets me every time. She may not have heard him say that in months and the clarity of his emotion is so moving.

There is another man, Johnny, who, once he hears The Andrews Sisters’ “Oh Johnny, Oh Johnny,” starts dancing in his chair! The music moves him so much, he starts talking about the beauty around him, how he loves everyone right now. A great example of how music can move us to feel deep emotions – and how people, even with severe dementia, can experience a range of emotions.

Doug provides care for his wife Mary Lou. I had a special affection for Mary Lou, as she reminds me so much of Carolyn, a woman in her early 50’s who I worked with in Dallas before moving to Denmark. The documentary shows some scenes of Mary Lou pressing the button for the elevator but is not sure which to press or if she did it right or what to do after she presses it. The shiny screw on the plate next to the elevator button is distracting. And she has difficulty buttoning her coat or clothes, and cannot put the pieces in a puzzle that her 2 or 3 year old grandson has solved. With dementia, the compass is off, fingers don’t work how you intend them to go, other distractions become hurdles to focus and attention, and shapes become too abstract to grasp their meaning. When Dan plays music for Mary Lou, her brain immediately responds, she doesn’t have to think about it or decipher it, it is completely natural. And quite enjoyable for her. After just a few notes, she starts dancing on the couch, then waving her arms around, and then gets up to dance to the Beach Boys’ “I Get Around,” asking everyone else in the room to join her. When the song is done, she is overcome with emotion, saying how it was the best thing she has experienced and thanking Dan Cohen. She is crying tears of joy.

Then here is Norm and Nell, where he has been caring for her at home for 10 years. Without drugs. Way to go, Norm!! They have been using music therapy to keep her at home and off medications.

By far, the music is less expensive than medications. It is also much easier on the body and mind. As Dr. Bill Thomas, geriatrician, says in the film, if you want to write a prescription for a drug that costs $1,000 for a month’s supply, no problem. If you want to write a prescription for a $40 iPod Nano and an iTunes subscription, the red tape comes out in force.

One really powerful interview that is shown is with Dr. Peter Davies, the scientist behind the Alzheimer’s medication Aricept. He says,

I’ve spent 38 years now working on Alzheimer’s Disease, and I haven’t done anything for patients that’s as effective as the music therapy is. I wish I had, and I’m still trying, but I really haven’t seen anything as positive as that.

Aricept is one of the primary drugs used to attempt to slow the progression and symptoms of dementia – by the way, it works in only 10-15% of people and by 3 years, they have progressed the same as the control group who didn’t take the medication.

I, personally, feel that drugs should be used in dementia only for conditions which are otherwise unmanageable (such as blood pressure regulation or with uncontrolled anxiety), but not as general sedatives or mood changers. Antipsychotics are rarely beneficial for people with dementia and older adults. They mostly do more harm than good, and they are not advised by the medical community for most older adults and not for people with dementia. Aggression is a tricky behavioral and psychological symptom of dementia (BPSD), and needs to be looked at from the individual level. The primary importance is that everyone is safe. It’s more important to figure out why the person is showing aggression than it is to have them sedated.

One question the documentary asks is, “Who are we without our memories?” This is an existential question of who are we, what is our essential human spirit, is our soul still there if our spirit/spunk is still there? It seems that people tend to think that when we lose memories, we lose ourselves and lose some of the essence of what it is to be human. One study in Northern Ireland found that nearly half of people who responded felt that once a person has a dementia diagnosis, they are no longer treated as a thinking human being. I think this film shows us that memories do not make the person, and that there are traits of us that remain even through mental health deterioration. I believe this documentary will help to break down the stigma that people with dementia, even severe dementia, can still think and feel, and that their soul or spirit or whatever you want to call it remains and should be respected and celebrated.

Music gives them a constant – their rhythm. I imagine it is somewhat exhausting to go through the catharsis that they experience in a short amount of time. They smile, they move and dance, they remember and connect, they often cry. It’s a lot of stimulation for someone with dementia. And it’s the right kind of stimulation. One thing (philosophical) I find interesting about people with dementia and people having dementia, is how we care for them. There are many advocates, organizations, determined individuals who are dedicating their lives to making dementia care personalized and compassionate. Here, we have a syndrome that is (for the majority) not curable and is progressive. The medical aspect of dementia care is less important than caring for the individual and figuring out how to enhance their quality of life. It is how we would want to be treated. And when you think about it, it’s how we all want to be treated now, whether or not we have dementia. To be cared for and regarded as an individual, not as our job status or diagnosis, but as who we are, even if we don’t remember all the other forms of us that we have been.