The part of my dad that dementia can’t take

Even as her father’s dementia makes communication difficult, he adores singing. Our reporter learns he isn’t alone – and research has found music may be key to understanding the brain.

My dad, Piet, has Alzheimer’s disease. He is one of thousands.

Alzheimer’s is one of the most common forms of dementia. It means that cells in my father’s brain no longer work as they should. Some of his older memories remain but his dementia is creating dark edges around many of them, rendering them unreachable, disjointed and confusing fragments that he can no longer routinely piece together.

I’m not writing this to incite pity for him or his family. He would never want that. But he would want us to better understand a disease that is killing off so many important neurons and changing his behaviour irreversibly.

Earlier in his diagnosis, I asked him what his dementia felt like. He told me it was as if a shadow or cloud was constantly following him around. He said that he wasn’t scared of what was happening to him. Accepting it made it easier to live with.

But as the disease took away more of his independence, his love of music persisted. My dad was the one who introduced me to 70s rock music, took a (somewhat reluctant) teenaged me to the opera and used to blast classical music around the house.

Now, even as his ability to communicate verbally is reduced, music is something he still has a tangible relationship with, especially opera music.

In the last two years, helped by music therapy, he started learning new musical skills. He strums simple notes on two harps – one small, one large – and sings several times a day.

When he sings, he calls it “opera”. At times he’ll burst into song in the supermarket (see below), during walks or even in the middle of an extended family gathering. Sometimes, he’ll awkwardly interrupt whatever conversation was going on. He simply stands, says “I would like to sing opera now” and belts out some lyric-less melodies. Sometimes he sounds quite beautiful, other times less so. But it doesn’t matter. With no sense of embarrassment at being in the limelight, he continues – even though my dad was never one for seeking attention.

I’ve long known that music can be used therapeutically for people like my dad, but it has other surprising benefits. Music is one of the many research tools that scientists are using to understand more about the brain – including how and why it slowly stops functioning.

People have called music a ‘super stimulus’. It really activates the whole brain. That’s why it’s so powerful; why it can have all these effects on people, not just with dementia but all of us,” says Amee Baird, a clinical neuropsychologist at Macquarie University in Sydney. “It’s like this island of preservation in the context of someone who has otherwise got quite severe cognitive impairment.”

Dementia started early for my dad. He was in his mid 50s, and it began as a small smudge on an otherwise healthy brain. At first not much changed. But over the nearly 10 years that have followed, the disease slowly took away his English, even though he lived in the UK for more than 20 years, and has stolen much of his native Dutch too.

My dad does not fall into any of the risk categories for dementia. There is no family history of it. He’s always been slim, healthy and active. This is part of why the disease is so devastating – it can affect anyone and we still do not understand why. In the UK alone an estimated 850,000 individuals have dementia, a figure forecast to increase as we all continue to live longer. Only a fraction of those get it as young as my dad.

This is why I was excited to discover a recent case study featuring a 91-year-old lady with advanced Alzheimer’s called Norma. She no longer recognises loved ones and cannot usually make new memories. Despite this, she was able to learn a new song that she had never heard before. She has no professional musical training but, according to her daughter, music always made her happy.

Norma’s daughter contacted Baird, who studies music and dementia, to explain that her mother had been singing new pop songs in the car. The neuropsychologist was intrigued. “You hear of people with dementia singing along to old songs from their youth, that’s common,” says Baird. “But not new songs.”

Norma’s musical memory was tested in several ways. First, she was prompted with familiar songs like Waltzing Matilda and You are My Sunshine to see if she could complete them. As expected, she had no problem with these.

She then was taught the melody of an unfamiliar Norwegian nursery rhyme. She managed to recall the tune 24 hours later. She was tested again after two weeks, and again recalled the melody with only minimal prompting.

To test her memory more generally, she was asked to remember three words, which she could not recall even when prompted two minutes later. She was also better at recalling familiar musical lyrics than well-known proverbs. Music really does have a special place in her memory and her brain.

Norma’s feat is the most detailed case study of its kind, according to Baird. It is her procedural memory system that seems to be in play – the one we use to perform actions that require little conscious thought, like walking. It is the same memory system that allows musicians with Alzheimer’s to continue to play their instruments.

That Norma learned a new song perhaps makes her case unusual. People like Norma and my dad may be more attuned to music than others are.

Still, it’s a promising glimpse into a severely impaired mind. It gives Baird hope that music could be used to teach individuals with dementia more new skills, as well as reducing anxiety and depression.

But music may also help with more than just memory.

As I have been witnessing with my dad, music somehow helps preserve an individual’s ‘sense of self’. As the late Oliver Sacks wrote in his book Musicophilia: “Familiar music acts as a sort of Proustian mnemonic, eliciting emotions and associations that had long been forgotten, giving the patient access once again to moods and memories, thoughts and worlds that had seemingly been completely lost.”

The idea is comforting for family members, and it’s one I see in my dad. Ask him what age he is or what job he used to do and he gets frustrated at his inability to answer. But sing a song with him and his face lights up. In those moments, it’s clear he’s still my humorous father who does not take himself too seriously.

As I started learning more about music’s role in understanding dementia, I found that several researchers use music to help unlock the brain’s activity. A 2015 study, for instance, identified (in healthy patients) segments of the brain in the medial prefrontal cortex that discriminate between familiar music and new tunes. Brain scans show that this same area is preserved in individuals with fairly advanced Alzheimer’s.

That could explain why some musical memories are kept when much else is forgotten. “We found it striking that the medial musical brain area we identified in young volunteers is less affected by the creeping damage of Alzheimer’s disease,” says one of the authors of the study, Robert Turner of the Max Planck Institute for Human Cognitive and Brain Science.

This part of the brain has also been shown as an important location for the “sense of self”. Turner’s work substantiates the idea that Sacks proposed: the “self” can still exist in individuals with dementia.

“It is also active in neuroimaging studies where people are asked to reflect on their own previous experience,” says Turner. It is an important part of the ‘default mode network’, so called because it is when the brain is in its ‘default’ mode, such as when we are daydreaming. “The very positive response of demented patients to hearing music which they know and love might be a reflection of this perhaps rare opportunity for self-affirmation,” says Turner.

 

Music seems to tap into the fact that our memories are not stored in specific parts of the brain. Our memories are not like separate documents stacked away in shelves that we can return to when needed. They are intricately tied to each other. As a result, the memory of a song might evoke a particular time, place or smell, as well as activate parts of the brain related to sound, words, rhythm and emotion. That’s why some musical abilities are thought to be spared in dementia: if one system breaks down, the rest can take over.

At University College London, neuroscientists are pioneering work in this area. Jason Warren, who leads the team, tells me that music allows him to look at how the brain’s networks interact without relying on the patient to communicate verbally. This means that music can reveal when a brain area is not working as it should. For instance, the brain responds very differently to music than it does for other complex sounds. In one study, Warren and his colleagues exposed individuals with Alzheimer’s to a series of noises, such as beeps, to see which parts of their brains responded. The areas important for processing complex sounds such as language were shown to be impaired. This explains why those with Alzheimer’s can often find it extremely difficult to follow a person’s voice against a noisy background or to hear their name in a noisy room, the so-called ‘cocktail-party effect’.

Music also allowed Warren’s team to understand why frontotemporal dementia patients have difficulties interpreting emotions. They no longer sympathise or respond when they see someone crying, for example, even if it is their significant other. These individuals are often good at identifying facts about a song. But they cannot classify its emotional properties when asked if a song is happy or sad. Brain scans show that the areas their disease affects are those important for inferring others’ mental states, known as theory of mind.

In another study, his team found that, despite losing their emotional world, some of these patients begin to crave music as if they are addicted to it. Somehow, their reward system is activated in response to music, even if they have lost the emotional connection to reward. “Music therapy might help the connectivity between those [lost] networks,” says Warren’s PhD student Elia Benhamou. This shows that even if on the surface these patients do not seem to react emotionally, their emotional system remains important to their world – and music somehow helps activate it.

Patients with Alzheimer’s show the opposite pattern. They can often understand the emotions behind a song, but they cannot usually recall its name or where they first heard it. In fact, they seem to find music about as rewarding as healthy people do. “Music is saying something very fundamental about why those [types of dementia] diseases are different,” says Warren. “Music can cut through the complexity.”

Studies like these are deepening our understanding of not only brain impairment, but also of healthy brains – and how all of our minds respond to music. Once we have a clearer understanding of these patterns, it could, in theory, help scientists pinpoint when brains are breaking down sooner than they currently can. Warren and Benhamou say that, theoretically, music could help identify behavioural changes even before a brain scan shows atrophy. This is similar to the discovery that the ability to interpret humour is impaired early on in dementia. “There’s every reason to think one could find similar things with music,” says Warren.

What strikes me as even more profound is his reasoning for why using music as a research tool provides such a rich smorgasbord of results. It activates the brain networks that are necessary for survival: hearing our surroundings, processing irregularities, our reward system and our theory of mind. This hints that music has a true “biological purpose”, Benhamou says – that is, we once needed it to survive. This is a theory, but if that is true, it explains why music elicits so many beneficial properties in those who are losing the very connections the brain needs to function.

“Every single human society has had music,” Warren says. “Why should a thing be so fundamental? The answer might be, before it was an art form, music was doing something fundamental about teaching us how to respond to other people.”

I don’t know what is going on in my dad’s brain when he listens to music. But it’s clear from the scientific literature that some of the neurological connections that have taken away much of his independence differ from the connections activated when he plays music or sings.

His spontaneous ‘opera’ singing has gradually declined over the last year, but he still sings to himself several times a day and clearly gets a lot of joy from it. “We just walked through town singing, just as we always do,” my mum told me last week.

Music makes my dad smile. When so much is lost, it gives him something that he still can create, interact with and enjoy. What has been most surprising to discover is that music may help him retain a part of who he is, even if that becomes more difficult for the rest of us to spot.

This knowledge alone has made it easier to confront what is often difficult to talk about: that my dad has dementia and will for the rest of his life.

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