There are tales of a philosopher who, on hearing of his son’s death, calmly noted: “I knew that I had begotten a mortal”. History did not record his wife’s reaction, but I’m not sure she would have been thrilled. Nevertheless stories of men like him are celebrated in certain philosophical circles. These individuals seek an elusive and virtuous state referred to as apatheia. A state free from passion which was thought critical to achieve true peace of mind, and peace with the world. From Buddhism to Ancient Greek philosophy, apatheia was considered the key to moral and spiritual success. Perhaps with a little more apatheia I wouldn’t feel the urge to fling my computer out of the window whenever it stops working.
When my Grandpa was told that his mother had died, he expressed the admittedly less articulate response: “Oh”. His face didn’t change, and he didn’t shed a tear. Doctors said his apparent lack of feeling was due to a clinical condition called apathy. Researchers describe apathy as a loss of goal-directed actions, but I prefer the explanation that ‘his get up and go, got up and went’. He was no longer interested in the things he used to enjoy and instead was perfectly content to sit in his chair for days on end. Why then was my Grandpa’s condition not considered a moral and spiritual success? Why was he not sought out by scholars and pilgrims seeking this enviable state of neutrality? And, if my Grandpa was perfectly content, why have I dedicated my PhD to understanding and treating apathy?
The central idea in my lab is that people with apathy lack clear expectations of how the world should be. So, when the world changes (for better or for worse), it still doesn’t change enough that they are motivated to act. If the light dims in their living room, it remains light enough. If the temperature drops, it remains warm enough. Whilst you and I may be motivated to fix the light bulb or grab a jacket, people with apathy have a much broader definition of how dark is dark enough, or how cold is cold enough to trigger a course of action. The world fails to violate their brain’s expectations and so they sit, apparently uncaring, in the cold and dark.
A former PhD student tested this theory in a scientific experiment which showed people with high levels of apathy have less precise expectations of the world. I am now testing this idea in people with the same diagnosis as Grandpa, people with frontotemporal dementia. Frontotemporal dementia is a rare type of dementia often beginning in middle-age, that causes changes to behaviour and personality, with many people becoming apathetic as a result.
The real problem with apathy in dementia is that it often points to a worse prognosis: people with apathy die sooner. So, every week I meet people with dementia. Some of whom have profound levels of apathy. I talk with them about their daily life, and play computer ‘games’ which reveal information about their decision making and expectations. By combining theory and data, I hope to identify circuits in the brain which cause someone to become apathetic. Even when applying for my PhD, I knew the reason this was important. To find treatments which can improve apathy, we need to know what to target in apathetic brains. Understanding the mechanisms at fault is a crucial part of finding drugs which can improve apathy and help people. Sounds great. Right?
My doubts began about three months ago during a discussion with my supervisor. In our conversation he asked why it was important we researched apathy and I listed all the very reasonable explanations I just gave you. “But why do we need to cure apathy?”, he said. I was a bit shaken by this. Treating things is always good, isn’t it?
I thought again: “Because it impacts their quality of life.” This did not satisfy. Aren’t patients with apathy in a state of contentment with the world as it is? After all, they have achieved the virtuous state sought after by monks and philosophers for centuries. If you ask apathetic patients with frontotemporal dementia if they’re happy, they will often tell you that they are. Is it fair to treat apathy with the risk of changing that answer?
Okay, so not quality of life. “Because they will be more motivated to take vital medicines”. He smiled then, a long slow smile. There are currently no cures for frontotemporal dementia. We should absolutely use drugs to try and improve the condition but what medication should they take? As we sat and discussed, I began to question the purpose of my PhD. Perhaps I should have been spending time on worthier pursuits? Watching the new season of Bridgerton, for example.
When my Grandpa was told that his mother had died, he said: “Oh”. Perhaps he truly was content with this. But over the years living alongside this condition, years of feeling as though my Grandpa didn’t care about anything, my Grandma was definitely not in a state of contentment. Carers often don’t get to share their side of the story, yet I see and hear the immense burden of dementia through my research, and the voices of family members. They confide in the spare moments within clinic and research visits. Research which they are rarely the focus of. Families aren’t the ones who receive new drug treatments after all.
When I saw that the purpose of this essay was to explain why my research mattered, I knew that to do it justice there were two stories I had to tell. On one hand, it is still true that treating apathy could be beneficial for patients, increasing survival and independence. But treating apathy may have an even bigger impact on their families. It is a story which is applicable to many neurodegenerative conditions, and which is sadly experienced by many first-hand.
My research is focussed on understanding the brain circuits which cause apathy. Over the next three years, I will study computational models of behaviour, brain scans and experimental medicines to develop better treatments for apathy in dementia. However, in my first year, I’ve also learned that questioning the motivations behind our research can be as important as the research itself. Apathy is not a philosophical idea. Apathy is a clinical condition that is bad for patients, and awful for their carers. Apathy research may be the key to giving families more time to enjoy each other’s company. That’s why I bother.
Rebecca Williams is PhD student at the University of Cambridge. Though originally from ‘up North’ in a small town called Leigh, she did her undergraduate and masters at the University of Oxford before defecting to Cambridge for her doctorate researching Frontotemporal dementia and Apathy. She now spends her days collecting data from wonderful volunteers, and coding. Outside work, she plays board games, and is very crafty.