A recent study on patients with neurodegenerative disease is receiving a lot of media attention this fall because it shines a comforting, positive light on an ancient question: what makes us who we are?, asked in a context relevant to our moment: what happens to our identity as neurodegenerative diseases such as Alzheimer’s steals memory and cognitive skills? The research gives an answer consistent with the burgeoning zeitgeist of our moment as well, as the importance of emotion and empathy surges forth in the neurosciences and law: Moral traits, such as compassion, empathy, and integrity, define who we are, not memory, as 17th century philosophers argued.
Based on answers from spouses who were asked questions such as “Does the patient ever seem like a stranger to you?” and “Do you feel like you still know who the patient is?”, the researchers concluded that Alzheimer’s and ALS patients remain the “same person” in the eyes of their friends and families far more often than patients with frontotemporal dementia (FTD). Across all three groups, changes in moral behavior predicted changes in how spouses perceived the patients identity, while changes in memory or intellect did not. Unlike other forms of neurodegeneration, patients with FTD suffer damage to the frontal and temporal lobes, the seat of social behavior, self-control and empathy, which are all needed to power the human moral compass.
The stories in the media all have the same angle and take away–in the Wall Street Journal, this one in Scientific American, and this one in the New Republic, in which I’m heavily quoted. The upside of this research, the reporters all write, is that the Alzheimer’s and ALS patients can take solace in the fact that the memory loss associated with the disease won’t impact who they are deep down. As long as moral traits, such as altruism, mercy, and generosity, remain, you will stay “you” in the eyes of your loved ones.
“Simply knowing that others continue to perceive them as the same person, even when they feel that their own identity is changing, can allow them to securely protect their sense of self,” writes Bobby Azarian. “[Alzheimer’s] caretakers may find some solace in the idea that memory loss doesn’t fundamentally change the person they love,” writes Vlad Chituk. “These results suggest something profound…Because that moral character is central to who we are, there is a sense in which Edith literally, and not just metaphorically, lives on in the people who loved her,” writes Alison Gopnik.
These are all quality articles that communicate creative and importance scientific research, and it’s a wonderful and life-affirming sentiment that rings true and brings hope to the more than 15 million people in the U.S. caring for those with memory loss, and the millions more that will in the coming decades. But should the conversation stop there? What about those people dealing with FTD? What happens when your husband, wife, or son loses the integrity and caring we all need and demand from each other? What then?
I watched my mother lose the scaffolding of her identity in the early stages of FTD, as did many of the caregivers I met as I researched for a book and sought comfort. I heard stories about their loved ones with FTD, who before they got a correct diagnosis, lost jobs, fiancees, and their community’s acceptance; they were arrested, accused of drug abuse; some ran around naked, tried to open the door of a moving car, embarrassed their teenagers–all because they lost the ability to take care of themselves, and whose symptoms made it difficult for families to cope with sanity. “It is what it Is,” the National Association of FTD has as their motto.
In the US at least, there’s a blanket of fear over a simplistic, negative view of neurodegeneration. The New Republic article states “FTD is ugly”; The researcher quoted on the work in the New Republic notes that people with FTD come to be seen as “moral monsters.” How true, at times; and yet, I submit, they contribute to a sense of abject fear and dismay that surrounds the concept of dementia in our society, one that inches farther and farther away from what it means to be a human at all.
We shouldn’t forget that we live in a society that places a gold metal upon a narrow interpretation of individualism, one that equates losing control over one’s behavior with moral failure. If we hold up self-control, good judgement, empathy, unquestioningly, as what makes a person “who they are,” it’s easy to see people who fail that test as less human. The truth is that many FTD patients indeed lose the traits that made them attractive to spend time around, but maybe we should stop, take a deep breath, and consider for a moment how that makes us healthy people respond to them. It becomes easy to turn away–I know because I sometimes did. It becomes easy for the legislature to ignore that social support that our government could give these families, who have real trouble finding services that cater to adults with dementia under 65.
The truth is that FTD, and Alzheimer’s as well, is ultimately a challenge and test of our own moral compass, a test of how well we can actually embody the ideals of kindness and compassion when faced with the distressing, exhausting, upsetting times that FTD sometimes brings.
The truth is that FTD affects people in different ways, and the symptoms change and fade into new ones over time. I’ve just come back from a walk with a woman whose husband has had a diagnosis of FTD for a very long time. Back 60 years ago, they had their first date at the Boston Museum of Art, then their second at the Boston Symphony Orchestra. She’s never stopped taking him to art museums, music performances, and book readings. She reads aloud to him. He played a mean game chess up until recently. I just watched him joyfully banging on the bongos at a drum circle in his group housing. And when I saw him wink at his wife from across the room as she finished her drumming, I felt my heart’s wound close a little as another space opened.
The truth is that my mother painted a self-portrait a year before she died, when she had seemingly lost her “self.”
The truth is that I’ve come to see FTD in two distinct ways. In the easier way, she is someone making you feel uncomfortable or bored or embarrassed. In another way, she is someone whose social circle has started to warp and wobble around her, as her boss suggests that she retire, as her colleagues gossip about her, as her students stop listening to her in class, as friends stop calling and visiting, as her family resists her advances and takes away her car keys, as people look at her with emotions she can no longer name, as some sigh more in her presence and talk with raised voices. In another way still, she is someone who smiles when someone takes her hand and walks her along the beach, rubs her back, re-buttons her shirt.
A few points to remember about neurodegenerative disease.
-Neurodegenerative diseases do not fit neatly into boxes. Alzheimer’s pathology can sometimes land in the frontal lobes, leading to symptoms more commonly seen in FTD.
–Twenty percent of ALS patients develop some behavioral/cognitive changes, and 20% meet criteria of dementia often similar in symptoms to FTD, which may go unrecognized in the clinic in the face of debilitating physical impairment and related frustration.
-There are several variants of FTD, with different symptom profiles. The one that first hits the areas called the right temporal lobe, anterior cingulate, anterior insula, and/or orbitofrontal cortex bring the worst antisocial behaviors, coldness, rudeness, and negative personality change. FTD patients with other patterns of damage can experience a loss of motivation, enthusiasm, and interest in former hobbies; some develop a gentle, cheerful, and childlike affect.
-There is a language variant of FTD, called primary progressive aphasia, featuring difficulties in either understanding words or producing fluent, grammatical speech. Behavioral issues may or may not develop along the way. The reason these very different symptomatic clusters are all referred to as FTD is because they are all caused by the same pathological proteins.
-As FTD eventually transitions into frank dementia, destructive behaviors fizzle out into reveal the peace and grace at the very deepest core of the person. The real challenge is to remember the flame of the human spirit is always there, if you choose to find it.