Between 1915 and 1926 an epidemic of encephalitis lethargica (“sleepy sickness”) swept the world, leaving many victims in a statue-like state, motionless and unable to communicate. In the 1960s the anti-Parkinson drug L-Dopa was tried on these patients, with dramatic results. After decades in a catatonic state, they “woke up”, with faculties and memories from their earlier lives intact. This apparent breakthrough was described by Oliver Sachs in his book Awakenings, later turned into a movie starring Robin Williams. It also formed the core of the challenging but intriguing novel Umbrella by Will Self. Sadly, the effects of the drug didn’t last and the patients gradually lapsed back into their torpor for the rest of their lives.
Few, if any of the victims of that original epidemic are probably alive today. Yet our rest homes and hospitals are full of people, not just elderly, who are kept in a similar zombie-like state. If you’ve helped care for a parent or grandparent with dementia you’ll know how dispiriting this can be.
Well I’ve just seen a little gem of a documentary at the NZ International Film Festival, Alive Inside, that shows how even the most intractable of dementia sufferers can have their lives improved immeasurably through the simple medium of music delivered via an inexpensive iPod and headphones.
Film maker Michael Rossato-Bennett follows the work of volunteer Dan Cohen, who set up a non-profit organisation in the US, Music and Memory. The premise of what they do is pretty straightforward and stunningly successful, yet Cohen faces enormous barriers to spreading the practice of helping dementia patients reconnect with their past lives and their present through the music they listened to when they were younger. One of the most heart warming of many examples was 92-year-old Henry – you can see the clip here.
He and the others looked like those L-Dopa patients must have, back in the 1960s – awake, alive and connected, not only with their memories but also with those around them. The big difference is that this therapy is sustainable and inexpensive. It wasn’t only dementia or Alzheimers sufferers who benefitted. A prickly and difficult woman, institutionalised with bipolar disorder and schizophrenia softened and smiled for the first time in a very long time, just through the music. When she said “I’m having fun”, you knew she really meant it. And a middle-aged man confined to a bed with MS for the past decade and facing a bleak, depressing future, was reconnected with his life and simple pleasures through the same medium.
Of course the music therapy is not a panacea and it may not work for everyone, but it made you wonder why no-one has tried this before on a large scale. The core function of music to stimulate and communicate has been well understood for a long time, yet many of the “nursing homes” that Cohen approached to take on board this scheme were surprisingly resistant. The problem appears to be that elder care has been taken over by the health system, rather than the welfare system and has been thoroughly medicalised. It’s easier, apparently, to keep patients controlled with anti-psychotic drugs than it is to give them what the really need – human contact, a sense of being needed, and of course that music. One practitioner in the documentary pointed out that he has no problem prescribing $1000 worth of anti-depressants for a dementia patient, but “prescribing” a $40 iPod shuffle loaded with their favourite music could be an insurmountable challenge.
But there is hope. Cohen’s cause has been picked up through social media and is finally getting some traction. And the baby boomer generation (to which I belong) is now contemplating its not-too-distant future as elders. They won’t put up with being institutionalised and hospitalised in a haze of medication. We just won’t let it happen – will we?
See the doco if you can – it’s a beaut, and far more uplifting than a film about dementia deserves to be. And load up that iPod with your favourite stuff. You might need it sooner than you think.