Are you still you even when your memory has faded?

Research finds what makes people with dementia still recognizable to their loved ones isn’t their ability to remember things, it’s the way they behave.

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Esther Honig (left) with her sisters and father, Jordan Honig. Jordan was diagnosed with early onset Alzheimer’s when he was 59. (Courtesy of Esther Honig)

Esther Honig (left) with her sisters and father, Jordan Honig. Jordan was diagnosed with early onset Alzheimer’s when he was 59. (Courtesy of Esther Honig)

This story is from The Pulse, a weekly health and science podcast.

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Esther Honig’s father, Jordan Honig, was incredibly smart. He was a sculptor-turned-mechanical engineer who had a habit of hijacking his daughter’s science fair projects.

The first sign anything was wrong with him was when he came home from work worried he could no longer do the complex math his job required.

The diagnosis sometime later: early onset Alzheimer’s. Jordan was 59.

Over the next few years, as he lost more independence and moved into an assisted living facility, Esther got the same question a lot — a question pretty much everyone with a loved one with Alzheimer’s gets:

“Does he still know who you are?”

The answer very quickly became, “Not anymore.”

“I remember I asked him how many daughters he had, and he could tell me about my oldest sister,” Esther Honig recalled. She said her father also remembered his second daughter. Esther was the third daughter, the youngest.

“Is there anyone else?” she would ask him. “You know, what about your other daughter?”

“He said, ‘I don’t have another daughter.’ You know, it wasn’t anything personal. It wasn’t like I was the least favorite or anything like that.”

The fact that her father no longer recognized her was not the most difficult part for Esther. It was the way the disease eventually changed the man she knew as Dad into someone else, someone she no longer recognized.

“He had gotten to a place that was really scary,” she said. “He was still physically able, he was in a fairly young, healthy body. And so he could be physically dangerous to other people, and he had kind of fallen into a paranoia of people, being trapped, of being imprisoned.”

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It wasn’t the memory loss that had Esther no longer recognizing her father — it was the drastic behavior change.

We often think of our memory as the software that informs our personality, but research suggests it may be less important than our behavior in terms of defining us.

Psychologist and cognitive scientist Nina Strohminger researches the self, or our ideas of the self. Who we think we are. Who we think others are. What makes us who we are as individuals.

She’s studied how people feel about the role of memory with a thought experiment.

“I tell people it’s the year 2049, and Jim gets into a car accident and he loses part of his brain. It gets damaged, and the scientists have to insert a microchip into his brain to restore that part of his brain that’s just been lost.”

But there’s a trade-off. Option one: “Now all of his memories are gone from his past life. So this is the condition where we say, we’ve obliterated all of the autobiographical memories.”

The other option is that Jim remembers everything, but he no longer knows the difference between right and wrong. He’s lost his moral conscience.

Strohminger said that, overwhelmingly, study participants say Jim is no longer Jim not when he forgets his entire life, but when he forgets right from wrong.

“They just say, ‘Because you’re a monster … if you don’t have that information. You’re just going to be a different person.’”

She took that same question of “losing your memories versus moral compass” to the caregivers of people with different neurodegenerative diseases.

“In addition to asking them about the extent of different psychological changes that the patient had undergone since their diagnosis, we also asked a series of questions about who the patient was. ‘Did this patient ever seem like a stranger to you? Do you feel like the patient has changed deep down? Do you ever feel like you don’t recognize them?’”

It turns out the people with a disorder called frontotemporal dementia were least recognizable to their loved ones. Frontotemporal dementia quickly deteriorates impulse control and decision-making.

Despite having many more intact memories than those with cognitive illnesses, they felt like different people. In fact, when researchers broke it down by symptom, regardless of illness, memory loss was the least important factor.

For Esther Honig, her father stopped being the man she knew and loved when his behavior changed drastically.

“There was such a small fragment of him there. It was not something I could really confidently say was my dad.”

While her father’s own memory was not that important to her in terms of defining him as a person, it was her memories of her father — the loving, wonderful and smart man he had been during her childhood — that she wanted to hold on to.

“Memories are a really precious thing. And if you have the privilege to try and maintain, or to try and safeguard, the good memories, that’s all you’re going to have when they pass away.”

Jordan Honig died in 2019. Esther Honig has chronicled their relationship and illness in several stories and podcasts, for example in this episode of The Pulse, “Feeling Your Age.”

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