My two cents on the recent ‘Morals, not Memories, Define You’ stories

Genevieve Wanucha

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.

2 FTD vs AD
MRI and PET scans of brain with FTD (top) and a brain with Alzheimer’s. Credit: Sébastien Coppe et al. 2012. Journal of Neurophysiology

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?

Raw Art: Mia Brownell and the American Dyspepsia
Raw Art: Mia Brownell and the American Dyspepsia

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.

A Global Perspective on FTD: Reporting from the Frontlines of the 9th International Conference on Frontotemporal Dementias in Vancouver

From the 2014 Archives

By Genevieve Wanucha, MGH FTD Unit

In October, I traveled into the warm grey Vancouver mist for the 9th International Conference on Frontotemporal Dementias (ICFTD) of 2014 where 590 researchers gathered in one hotel ballroom to discuss the newest advances in the science and treatment of a class of devastating brain diseases. I brought home some highlights, including big funding and clinical trial news, Dr. Bruce Miller’s forceful advocacy for improved diagnosis, the curious case of the C9 expansion mutation, groundbreaking findings from the UK’s Genetic FTD Initiative and the launch of a US version, tau PET imaging, and, of course, the humanity at the heart of this kind of science.

Members of the MGH FTD Unit in Vancouver.
Members of the MGH FTD Unit in Vancouver.

Frontotemporal degeneration (FTD) affects an underestimated 150,000 people in the United States, although quality epidemiological studies have not been conducted. The term FTD covers a wide spectrum of pathologies that damage the brain’s frontal and/or temporal lobes. Where the disease hits the brain, and how severely, determines a person’s symptoms, which can affect socio-emotional behavior, language, or motor functions.

The ICFTD has its roots in a series of small meetings in Lund, Sweden in the 1980’s and 1990’s, at a time when FTD was known only as Pick’s Disease, hardly diagnosed, and would lag behind Alzheimer’s research for decades. The event is now the premier venue for synthesizing knowledge about FTD, uniting research areas ranging from molecular genetics to physiology, and from social cognition to diagnostic brain imaging. Held once every two years, it’s an unmissable event for an FTD researcher.

“This is the one meeting I insist everyone in my lab attends,” said William Seeley, Professor of Neuroanatomy at University of California San Francisco who has been sharing his lab’s increasingly influential research on the vulnerabilities of certain neurons and brain circuits to bvFTD at this conference for the past decade.

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New job!

I have just started my position at the University of Washington’s Memory and Brain Wellness Center as the science writer. I’ll be writing about advances in the research and treatment of Alzheimer’s, Parkinson’s, and Frontotemporal degeneration at UW. The new website will launch in late summer or early fall, and I’ll let you know when it’s up and running.

The UWMBWC is an innovative model of care that accelerates basic and clinical research, conducts clinical trials, and provides state-of-the-art disease detection and treatment to patients with many forms of neurological disease. The center unites an enormous amount of researchers and clinicians around that common goal. We encompass the UW Neurology and Neurosciences, Integrated Brain Imaging Center, UW Memory and Brain Wellness Clinic, Alzheimer’s Disease Research Center, and the Pacific Northwest Udall Center of Excellence for Parkinson’s Disease Research. I have a lot to do!

Neurodegenerative research, caregiving, and outreach efforts often reveal humanity at its best, and that’s why I’m in this field forever! The view from my desk…


What’s in a Word?

Semantic dementia illuminates the surprising power of words in emotion perception

By Genevieve Wanucha, MGH FTD Unit

What if you couldn’t remember what the word ‘anger’ meant? What if the concept was totally erased from your mind? If ‘anger’ failed to call to mind the knowledge built over a lifetime of experiences of anger—the sounds of yelling or honking horns, the bodily feelings of seething in silence or lashing out, the visuals of clasped fists or glaring eyes—could you still perceive anger on someone’s scowling face?

diss_imgIf you say yes, you fall in line with the prevailing view in psychology. Ever since the 1960s work of Paul Ekman in Papua New Guinea communities, most emotion scientists have assumed that the ability to perceive happiness, sadness, anger, disgust, and fear on faces is universal across all cultures and doesn’t depend on pre-existing knowledge about emotion. In otherwords, certain configurations of facial muscles are the shared language of humanity.

A collaboration of neurologists in the MGH FTD Unit and emotion researchers in the Affective Science Laboratory at Northeastern University has another perspective to offer, based on a study of emotion perception in patients with semantic dementia. The findings, recently published in the journal Emotion, both challenge widespread assumptions in science and give insight into the unique experience of patients.

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Favorite tweet of the week!

The SIRS: A New Tool to Predict Social Symptoms in Brain Disease

Courtesy May Lesser/ National Library of Medicine
Courtesy May Lesser/ National Library of Medicine

Researchers in the MGH Frontotemporal Disorders Unit have designed a new clinical tool called the Social Impairment Rating Scale (SIRS) that measures the types and severity of social symptoms in brain disease. This investigation into the breakdown of social behavior in neurodegenerative disease exposes the emotional architecture of human personality.

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The Language of Math, A Profile of Dimitri Bertsekas

MIT Stata Center by Dimitri Bertsekas
MIT Stata Center by Dimitri Bertsekas

Dimitri Bertsekas’ forty-four years of contributions to areas such as optimization theory, data networks, dynamic programming, and large-scale computation proves nearly impossible to measure. His 15 books take too long to summarize. But a few words capture his skill and passion: the language of mathematics. He ‘translates’ and ‘formulates’ and ‘expresses’ complex problems into a language of rules and numbers.

As Published in MIT LIDS

After spending his youth in Athens, Greece and earning his masters at George Washington University, Dimitri arrived at MIT in 1969 and completed his PhD thesis in systems science in two years. There, he witnessed a transition from a narrow focus on control theory to a much broader focus on systems analysis and its set of applications, which included data networks and power, communication, and transportation systems. It was a time when computation was primitive. As Dimitri thinks back to them, he chuckles. “At that time, a computer had 64,000 bits of memory—that’s 64 kilobits, not megabits, not gigabits like we have now,” he says. “The idea of moving messages between computers with those capabilities was mind boggling.” Though he coul d have never predicted the complexity of today’s networks, he has always been able to see through to their underlying mathematical structure.

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