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.
It’s like this island of preservation in the context of someone who has otherwise got quite severe cognitive impairment
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.”
She was able to learn a new song that she had never heard before
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….