Dale Goldhawk, Vice Chair of ADI, takes a personal view on psychosocial dementia research.
It’s a sad fact that, to date, not much in the Alzheimer research world has been considered “groundbreaking”. The development of cholinesterase inhibitors certainly marked some progress but, while those medications can help with symptoms, they bear no resemblance to an effective treatment. And that’s where we are today in 2019. Sure, there have been some research and clinical trials, showing the usual “promising results” but these promises are often modest at best.
To my way of thinking, any breakthroughs will likely come through psychosocial not biomedical research. And when I think of quality of life breakthroughs, one immediately comes to mind.
I remember many years ago sitting with my father, in his seventh year of living with Alzheimer’s disease. He was confined to bed, often spent the day in a fetal position and had become nonverbal. All he was able to do was make a humming sound in reaction to my words. I would chatter away with him, hoping it was giving him some comfort and maybe, occasionally, a word or two somehow got through. I started to think of Alzheimer’s disease as a heavy blanket or curtain that hung between my father and me, blocking our communication.
One day, with other family members in his hospital room, the subject turned to marriage. There was a lot of joking around and at one point I said to my father as I sat on the edge of his bed and to other members of my family, “Well one thing I know about marriage for sure. I sure don’t deserve such a smart and beautiful woman as [my wife] Jill”.
My father, a pretty good jokester in his earlier years, suddenly stopped humming and turned over to me and said: “No, you don’t”. It was a small window. The curtain parted slightly and then closed again. Two weeks later, my father died.
Years later, as I became involved with the Alzheimer Society of Canada, I discovered that other family members of people with dementia had similar experiences. I learned from researchers that these momentary episodes of clarity did happen. Then came the breakthrough. The power of music in the fight against dementia was discovered and quantified.
Since then, research has shown that musical aptitude and appreciation are two of the last remaining abilities to fade in people living with dementia. Noted neurologist Oliver Sacks offers a simple explanation that music evokes emotion and emotion can bring back memories, sometimes memories that will last for hours, maybe days.
The Alzheimer Society of Canada (ASC) has been using music therapy for years, just as many other organisations have around the world. Here’s a link to a video ASC produced in 2011 when the ADI conference last came to Canada, showing the positive impact of music: https://alzheimer.ca/en/Home/We-can-help/Resources/Power-of-music.
One of the most remarkable demonstrations of the power of music came in from the documentary ‘Alive Inside’ portraying Henry, a longtime resident of a care home in the United States. I bet you can’t watch it without either laughing or crying or both: https://www.youtube.com/watch?v=Fw7Y78aqf_I
Listening to music has, in many cases, remarkable effects on cognition, but there is also research that seems to indicate that singing along is even better: Opera Singer Turned Neuroscientist Uses Music as Medicine for Dementia, Autism, and More.
All these examples sounded familiar to me. Something happened between me and my father all those years ago to make the curtain part, just a little. If only I had known when my father was alive. In his younger years he played saxophone and clarinet in the era of big bands in the 1940s. If only I had known I could try to connect with music. What a difference it could have made.
Dale Goldhawk is an advocacy journalist, author and President and CEO of public and media relations company Goldhawk Group Canada. Dale has been Vice Chair of ADI since 2014.
For more information on the state of dementia research, read ADI’s World Alzheimer Report 2018: The state of the art of dementia research: New frontiers.