When her mother was diagnosed with Alzheimer's around 1995, Joan Wright tried to prepare for the heartbreak the disease leaves in its wake. She'd always had a strained relationship with her mom and expected dementia to lead to more tears and frustration.
But in the midst of many difficult moments, Wright, now 60, found blessings, too.
"It was a very positive thing that my mom allowed me to care for her," she said. "This is a disease of loss, but my mom had her smile and she could still hug me."
Wright's mom, Rosemary, would also help tuck her fellow nursing home patients into bed at night and offer attendants back rubs. Her character left a lasting impression on people in the final years of her life, even after conversations and other basic tasks had become difficult.
"While she lost her cognitive memory and working memory, she didn't lose her emotional memory," Wright said. "My mom became her very essence: a loving, nurturing person."
Rosemary's moral identity remained intact for most of the 10 years she struggled with Alzheimer's, bringing Wright comfort during a period of immense change. That isn't the case for all Alzheimer's patients, but for many, traits like honesty, compassion and humility can continue to convey who a person is even when mental or physical deterioration affects what they can do, a new study on neurodegeneration and identity reported this summer in Psychological Science (paywall).
The study concluded that it's an individual's morality, rather than memories or other behaviors, that can preserve a person's identity for friends and family members, encapsulating what philosophers call "the essential self."
The findings are the first to draw upon insights from the loved ones of people with neurodegenerative disorders, and they illustrate how moral concerns drive human behavior, influencing the relationships people build, the decisions they make and the legacy they leave when they die, according to brain researchers and other caregivers like Wright.
"When you first meet someone, you're focused on what you have in common, like sharing an interest in certain books and movies," said Nina Strohminger, one of the study's coauthors and a postdoctoral research fellow at Yale School of Management. "But what keeps the relationship going is whether the person is moral."
The essential self
The question of what aspects of a person constitute his or her true self has long been debated in philosophical texts, college classrooms and even pop culture.
Watching "The X-Files" inspired Strohminger to enter the debate, because she was fascinated by the assumptions characters made about what gives people their unique identity.
"There was a certain type of episode in which (a character's) spirit or soul would leave and go into someone else. But the person being possessed would only have some of the original (personality) traits," she said. "I thought to myself, 'That's interesting. There's a pattern here.'"
And so Strohminger began to investigate this pattern, drawing on her work in moral psychology and the insights of her research partner, Shaun Nichols, a professor of philosophy at University of Arizona.
Initially, the pair had study participants assess hypothetical situations. For example, they had people imagine running into an old friend they hadn't seen in 40 years, and asked them to consider which personality changes would make this former pal unrecognizable.
The results, published in Cognition in 2013, were striking. Moral changes, such as growing more racist, cruel, generous or empathetic would be far more alarming than other types of personality shifts, like developing a new interest in classical music or becoming more forgetful, participants said.
Strohminger and Nichols then shifted their focus to real-life situations, comparing when and if neurodegenerative disorders lead to a perceived loss of identity.
In the new study, the researchers analyzed surveys submitted by the friends and family members of individuals suffering from one of three disorders: Alzheimer's disease, Amyotrophic Lateral Sclerosis (ALS) and frontotemporal dementia, which is the most common form of dementia after Alzheimer's and often leads to moral impairments. They asked people to describe how sickness had changed the sufferer's personality and if the patient was still the same person underneath.
Again, moral behaviors were more significant than other characteristics like remembering family stories or being able to engage in conversation.
"As long as core moral capacities are preserved, perceived identity will remain largely intact," the researchers concluded.
Morality and the brain
A variety of sources influence moral development, including the type of environment people grow up in, lessons imparted by parents, and genetics, said Paul Root Wolpe, a professor of bioethics and director of the Center for Ethics at Emory University.
Certain aspects of a moral code are present even in infants, he added, noting that researchers have identified an instinct for fairness in children less than one year old.
"As you're developing, morals develop with you," although not in a linear or straightforward manner, Wolpe said. People's interactions with others and individual experiences open their minds to new ways of thinking throughout their lives, adding richness to the basic moral grounding that's present from the beginning.
This complex development process means that morality has no true home in the brain. It lives within both rational and emotional decision-making systems, Wolpe added.
Although Alzheimer's disease might rob a person of memories of the experiences that furthered their moral development, morality's deep roots in the brain mean that a sense of right and wrong often lingers longer in a sufferer's brain than other skills, creating the kind of special moments Wright described, said Nichols, Strohminger's coauthor.
"Patients ask, 'How is your day? How are you feeling?'" he noted. "They might not remember your answer, but the fact that they're asking means they sincerely want to know."
The ties that bind
One of the reasons that an Alzheimer's patient's kind greeting or smile is so compelling is that human beings instinctively look for moral behaviors in others, Strohminger said.
Distinctive memories might inform the narrative people tell about themselves, but morality is the glue that bonds people together, she said.
"A person's moral character as compared with, say, their personality or shared interests is the ultimate dimension by which we judge friends, business associates and mates," wrote Strohminger and Nichols in their 2013 study.
Morality's value is easy to recognize in the times when its absent, as Kim Fitton, 56, whose father was recently diagnosed with Alzheimer's, has learned.
When caring for her mother-in-law, Eileen, who died from the disease eight years ago, Fitton was struck by how Eileen's kindness and dignity carried the pair through difficult moments. It was heartbreaking to watch Eileen deteriorate, but there was a gentleness that stayed with her to the end.
However, Fitton's father has met his diagnosis with meanness, resisting adjustments to his schedule and pushing family member's away. The disease is magnifying his worst character traits, which further complicates challenging moments, Fitton said, making it hard to tap into the compassion that served her through Eileen's many years of suffering.
A moral mindset
Although morality has always been a key concern of parents, religious leaders and many other members of society, recognizing the important role moral identity plays at the end of life can help people think about it in new ways.
For example, months after the research was finalized, Nichols continues to reflect on how the importance of moral character could inspire new medical interventions for people at risk for Alzheimer's disease and other forms of dementia.
"What if we tried to sustain moral traits in dementia? No one has tried to do that," he said. "Doctors have (patients) do memory tasks like puzzles to keep the memory going, but our study shows it's at least as important to preserve people's moral grounding."
Wright, who drew on her experience with her mom to start an Alzheimer's caregiver support group with the Norwell Visiting Nurse Association and Hospice, said her time as a caretaker helped her reorient her own values and focus on strengthening her own moral character.
"When you think about your own potential journey down that road," you wonder about the impressions you'll make on others as your memories fade, she said. "The relationships we build in life are so important."
But in the midst of many difficult moments, Wright, now 60, found blessings, too.
"It was a very positive thing that my mom allowed me to care for her," she said. "This is a disease of loss, but my mom had her smile and she could still hug me."
Wright's mom, Rosemary, would also help tuck her fellow nursing home patients into bed at night and offer attendants back rubs. Her character left a lasting impression on people in the final years of her life, even after conversations and other basic tasks had become difficult.
"While she lost her cognitive memory and working memory, she didn't lose her emotional memory," Wright said. "My mom became her very essence: a loving, nurturing person."
Rosemary's moral identity remained intact for most of the 10 years she struggled with Alzheimer's, bringing Wright comfort during a period of immense change. That isn't the case for all Alzheimer's patients, but for many, traits like honesty, compassion and humility can continue to convey who a person is even when mental or physical deterioration affects what they can do, a new study on neurodegeneration and identity reported this summer in Psychological Science (paywall).
The study concluded that it's an individual's morality, rather than memories or other behaviors, that can preserve a person's identity for friends and family members, encapsulating what philosophers call "the essential self."
The findings are the first to draw upon insights from the loved ones of people with neurodegenerative disorders, and they illustrate how moral concerns drive human behavior, influencing the relationships people build, the decisions they make and the legacy they leave when they die, according to brain researchers and other caregivers like Wright.
"When you first meet someone, you're focused on what you have in common, like sharing an interest in certain books and movies," said Nina Strohminger, one of the study's coauthors and a postdoctoral research fellow at Yale School of Management. "But what keeps the relationship going is whether the person is moral."
The essential self
The question of what aspects of a person constitute his or her true self has long been debated in philosophical texts, college classrooms and even pop culture.
Watching "The X-Files" inspired Strohminger to enter the debate, because she was fascinated by the assumptions characters made about what gives people their unique identity.
"There was a certain type of episode in which (a character's) spirit or soul would leave and go into someone else. But the person being possessed would only have some of the original (personality) traits," she said. "I thought to myself, 'That's interesting. There's a pattern here.'"
And so Strohminger began to investigate this pattern, drawing on her work in moral psychology and the insights of her research partner, Shaun Nichols, a professor of philosophy at University of Arizona.
Initially, the pair had study participants assess hypothetical situations. For example, they had people imagine running into an old friend they hadn't seen in 40 years, and asked them to consider which personality changes would make this former pal unrecognizable.
The results, published in Cognition in 2013, were striking. Moral changes, such as growing more racist, cruel, generous or empathetic would be far more alarming than other types of personality shifts, like developing a new interest in classical music or becoming more forgetful, participants said.
Strohminger and Nichols then shifted their focus to real-life situations, comparing when and if neurodegenerative disorders lead to a perceived loss of identity.
In the new study, the researchers analyzed surveys submitted by the friends and family members of individuals suffering from one of three disorders: Alzheimer's disease, Amyotrophic Lateral Sclerosis (ALS) and frontotemporal dementia, which is the most common form of dementia after Alzheimer's and often leads to moral impairments. They asked people to describe how sickness had changed the sufferer's personality and if the patient was still the same person underneath.
Again, moral behaviors were more significant than other characteristics like remembering family stories or being able to engage in conversation.
"As long as core moral capacities are preserved, perceived identity will remain largely intact," the researchers concluded.
Morality and the brain
A variety of sources influence moral development, including the type of environment people grow up in, lessons imparted by parents, and genetics, said Paul Root Wolpe, a professor of bioethics and director of the Center for Ethics at Emory University.
Certain aspects of a moral code are present even in infants, he added, noting that researchers have identified an instinct for fairness in children less than one year old.
"As you're developing, morals develop with you," although not in a linear or straightforward manner, Wolpe said. People's interactions with others and individual experiences open their minds to new ways of thinking throughout their lives, adding richness to the basic moral grounding that's present from the beginning.
This complex development process means that morality has no true home in the brain. It lives within both rational and emotional decision-making systems, Wolpe added.
Although Alzheimer's disease might rob a person of memories of the experiences that furthered their moral development, morality's deep roots in the brain mean that a sense of right and wrong often lingers longer in a sufferer's brain than other skills, creating the kind of special moments Wright described, said Nichols, Strohminger's coauthor.
"Patients ask, 'How is your day? How are you feeling?'" he noted. "They might not remember your answer, but the fact that they're asking means they sincerely want to know."
The ties that bind
One of the reasons that an Alzheimer's patient's kind greeting or smile is so compelling is that human beings instinctively look for moral behaviors in others, Strohminger said.
Distinctive memories might inform the narrative people tell about themselves, but morality is the glue that bonds people together, she said.
"A person's moral character as compared with, say, their personality or shared interests is the ultimate dimension by which we judge friends, business associates and mates," wrote Strohminger and Nichols in their 2013 study.
Morality's value is easy to recognize in the times when its absent, as Kim Fitton, 56, whose father was recently diagnosed with Alzheimer's, has learned.
When caring for her mother-in-law, Eileen, who died from the disease eight years ago, Fitton was struck by how Eileen's kindness and dignity carried the pair through difficult moments. It was heartbreaking to watch Eileen deteriorate, but there was a gentleness that stayed with her to the end.
However, Fitton's father has met his diagnosis with meanness, resisting adjustments to his schedule and pushing family member's away. The disease is magnifying his worst character traits, which further complicates challenging moments, Fitton said, making it hard to tap into the compassion that served her through Eileen's many years of suffering.
A moral mindset
Although morality has always been a key concern of parents, religious leaders and many other members of society, recognizing the important role moral identity plays at the end of life can help people think about it in new ways.
For example, months after the research was finalized, Nichols continues to reflect on how the importance of moral character could inspire new medical interventions for people at risk for Alzheimer's disease and other forms of dementia.
"What if we tried to sustain moral traits in dementia? No one has tried to do that," he said. "Doctors have (patients) do memory tasks like puzzles to keep the memory going, but our study shows it's at least as important to preserve people's moral grounding."
Wright, who drew on her experience with her mom to start an Alzheimer's caregiver support group with the Norwell Visiting Nurse Association and Hospice, said her time as a caretaker helped her reorient her own values and focus on strengthening her own moral character.
"When you think about your own potential journey down that road," you wonder about the impressions you'll make on others as your memories fade, she said. "The relationships we build in life are so important."
