Among the pioneers of personalised music for people with dementia are the world-renowned co-founders of the Institute of Music and Neurologic Function in New York, music therapist Dr Concetta Tomaino and psychologist Dr Oliver Sacks. In an interview for Playlist for Life in the sprawling nursing home and outpatient centre where she works in the Bronx, Dr Tomaino explained what she and Professor Sacks have discovered about the ability of music with an autobiographical resonance to ‘bring people back’.

Your research was about observing something that seemed to be working and then going in and finding why it was working?

Yes, that’s been the focus of the Institute of Music and Neurologic Function since its inception in 1995. I had observed that people who were deemed “non-responsive” came to life and showed signs of recognition when familiar music was played.  This was back in 1978.  My background was in science.  I was pre-med but ended up as a music major in college.

So was there something about music specifically that could engage recognition in people for whom all other kinds of sensory recognition seemed to be damaged in these end-stage people with dementia? Music was not only accessible, in that they showed signs of familiarity, but people who were non-verbal also started singing the songs. So at some level of brain activity there was a way of arousing this response and holding it long enough that they were able to participate.

When I came here in 1980 Oliver Sacks had already experienced a sort of awakening with music with his post-encephalitic Parkinson’s patients.  So he and I were like partners in crime.  Why is this happening?  We tried to engage scientists in the early 80s, who said, “You can’t study music.  It’s too complex.  We’ll never find out why this works.”

So over the years Oliver got really involved with his books and cases and provided name support and consultation support with the patients, but it was the boards of directors of the Beth Abraham Centre here who said this was a really good idea and we should give Connie and Oliver support to start this Institute.  It became clear that we needed to study the clinical implications here – how and why does music affect people, and can we refine some of the protocols so that we can provide more direct approaches to care?  But at the same time we realised that the neuroscience community was becoming more able to study this phenomenon in real time.  So how can we connect to that community and inform them of the clinical works so that they get excited to want to study it in their labs as well?  Over the years we’ve formed very nice relationships – collegial exchanges and symposia to really advance knowledge in this area.

Where have you got to with the how and the why with music and dementia?

There are several recent studies that have come out. On a really basic level science tells us that all the components of music are processed throughout the brain. In order for us to appreciate a piece of music many parts of the brain have to work in synchrony to allow this to happen. So that has a multiplier effect on providing information. It’s like when you have a tip of the tongue phenomenon – if I just had an extra clue I would remember it. Well, music, because it involves so many brain areas, is actually providing multiple clues to the person, because a song isn’t just melody, it’s rhythm, it’s emotional associations, it’s historical associations.

So if you have all this, just any one piece of music isn’t going to affect a person with dementia – it’s a piece of music with personal importance, at least when you’re talking about arousing someone who seems to be lost. (If you’re talking about early Alzheimer’s and engaging attention and involvement, then it can be any music that’s novel and interesting, because in that case it’s the increasing attention and focus that’s going to slow down the dementia process.)

So we’ve come to an understanding of a whole range of music applications that can provide preventative as well as … I won’t say restorative but at least maintenance quality of life towards the end of life.

So, what you’re saying is that at the beginning, when it’s about focus and attention, you can give people anything that they like listening to and it’s fine. But further on it has to be personally meaningful because you’re engaging the autobiographical parts of the brain?

That’s exactly right. In fact you must have come across Pietr Jenata’s study of autobiographical music (you can download all his studies from his website).  When his students were going through a functional imaging test, he found that when the music was about a person or a place or a key emotional state, that particular song in this person lit up this very specific part of the brain called the medial prefrontal cortex – an area of convergence for things like sense of self, sense of others, connections and so on.  So the part of the brain that puts all that together was excited and lit up when someone heard music of particular importance. I think what Pietr is looking at now is whether there’s the same light-up when someone with dementia hears that type of music. It could be that that recruitment, that enhancement is providing enough cumulative clues to allow something to be familiar and recognisable.

You’ve actually seen it happening?

Oh, yes, and there’s no doubt.  We’ve studied it over time, and looked at different types of music – and, sure enough, it’s the autobiographical that works.

Why is there still such potential for synchronicity in a damaged brain?

Even at end stage in dementia if people still have physical ability you’ll see them beating to the music.  Now if you look at how the auditory system is wired, the auditory nerve has immediate connections to the fastigial part of the brain, the audinomic nervous system, respiration, heart-beat, brain stem and then another connection to the flight-or-flight amygdala.  So without any awareness on the part of the person, the auditory nerve is already sending pulses, like pressure pulses, into these very basic nerve areas – one having to do with our breathing, respiratory rate and heart rate, vegetative-type rhythms, and the other having to do with arousal: is this noise-sound safe or is it something that could harm me?  So without the person having any cortex or any ability to process information, their brain is receiving information about the sound.

Is that because it’s coming from down in the primeval part of the brain?

That’s where it’s being aroused.  So you have this pulse of sound that’s coming in, and those neurons, as they receive that pulse, are going to fire in that rhythm and it’s going to stimulate these very primary parts of the brain that only stop when you die.  So if the person is breathing on their own they’re going to be influenced by the sounds.  The only way they’re not influenced by the sounds is if both of their cochlear nerves were cut.  And even if they were deaf they would still get the pulse and still receive information about timing.

So almost literally until the last breath people with sound ears are able to respond to music?

Oh, absolutely. Sound is the last sound to go and the first one we get. In the foetus at five months auditory or music memory, scientists have found, is already created. The ability to process timing from sound is already established when the child is born, because it gives the child a way of passing information in the environment such as language – that part of the brain is already recording timing information. It’s the first sense in the foetus and the last at death.  It’s one of the most robust sensory inputs we can have.

And the one thing dementia cannot destroy?

That’s right.  They may not be able to sing all the words of a song, but they’ll show you through facial expressions that they recognise it.  And many times, up until the very end, they can sing the words. They just come back. It’s a very cognitive process.

And the words are another part of the brain, another hemisphere even?

Right. Five years ago I’d probably have said it was more localised activity, but scientists these days are really moving away from what they call brain dominance and talking more about neural networks and how these parallel networks inform these dominant areas of the brain. So, over one’s lifetime (this is my understanding – I’m not a neuroscientist but I study it every day) these key areas take up certain aspects of dominance because of the ability of the brain to use its territory wisely. So the left hemisphere tends to run faster than the right hemisphere, and so the crick analytical processing tends to get relegated to the left hemisphere because that part fires faster and processes faster.  Whereas the more introspective, creative, feeling dominance tends to be on the right side because that’s a little bit slower.  So it’s like the brain has allocated its territory based on how fast it works. Language is on both sides, but word retrieval is on the left. Syntax and analytical ability is left.

So what is music doing to stimulate that in someone for whom normal word retrieval has gone?

It’s again the association and information, where sound and melody are so connected to the words it’s no longer word retrieval, the words belong to the song. Most people experience those in-the moment responses.  We’ve tried to use that ability to sing and connect to music on a daily basis as a way of preserving that kind of mental engagement and recognition.

What if music makes them cry?

It’s not like they’re crying because it’s sad or painful.  It’s triggered the emotional limbic areas of the brain, and probably the only emotion that gets released at that point is crying.  Sometimes you’ll see laughter and smiling too. It’s sometimes like when you tear up at music yourself and you’re not really sad, it’s just overwhelmingly beautiful.

If we find the music is producing tears, what is the correct thing to do?

If they’re physically upset and uncontrollable and screaming, then stop.  But otherwise it’s probably a cathartic thing.  It would be nice, if that were to happen, if someone were to hold their hand. Just let the tears come and hold their hand. Chances are if you let the tears come you let the deepest emotion come out and by holding their hand through it they will stop crying soon and begin to talk.

Why is the effect only for a short time?  If music from the playlist is offered intermittently throughout the day, the effect will increase.  Fifteen minutes at a time throughout the day is one way of structuring the intervention.  An hour or so at once would also be a good session of passive listening.  But if the music is on all the time, people are only intermittently engaged and it becomes environmental noise.

What is the main challenge?

The only detriment to this, and you have to be careful, is that the person who’s pleasantly unaware will now become increasingly aware that they don’t know where they are.  So be careful if a person becomes agitated, aroused so much that they’re now some place they don’t recognise.  You want to make sure it’s maintaining improved quality of life. You may have to stop listening to music and be with her physically to ease the transition. Music is very powerful when you’re using it to affect people’s emotions and awareness and brain functions and is not to be lightly administered.

Is this a therapy or an activity?

This is a treatment.  Most nursing homes have music specialists in activity, but we’re talking about intensive music therapy whose goal is to affect emotions and remembrances and that’s a very delicate area.

You need to have a team approach here.  Should there be a decrease in behaviours, you need a decrease in medication.  You need to create a guide that nursing staff will evaluate behaviours on and have that influence so that medicine is being looked at. You need to be proactive.

What does this mean to you?

I’m addicted to this.  It’s been 35 years. What’s happening is that neuroscience is catching up. People say it’s anecdotal.  All these clinical observations, all these phenomena that I and my colleagues have been writing about for years, saying this is what we see, this is probably what music is able to do, it’s only in the last 10 to 15 years that scientists have been able to say that listening to this kind of music engages increased frontal cortex activity or that the impulses will stimulate arousal of the cerebellum.  They can now say that certain musical experiences will trigger these types of events in the brain.