What Remains of the Self After Memory Is Gone?

Alzheimer’s disease is characterized by a progressive loss of memory. In the early stages, patients experience difficulties in retrieving names and words as well as an increased level of forgetfulness. But they can still largely function in society, and some can even drive or live on their own.

However, as the disease progresses, patients lose more and more of their personal memories, until they get to the point where they don’t even remember their own names or any events of their life. Because of this loss of memory for personal information, doctors and researchers alike tend to view the course of Alzheimer’s as a progressive loss of self. After all, what does it mean to have a self-concept if you don’t have any autobiographical information to describe that “self” with?

In an article recently published in the journal Social Psychology Quarterly, Cleveland State University sociologist Linda Francis and her colleagues argue that this emphasis on cognitive loss doesn’t fully describe the condition of late-stage Alzheimer’s patients. In particular, the conception of dementia as a loss of self fails to take into account what still remains of personal identity even after memory is gone.

To begin with, the view of Alzheimer’s as a loss of memory isn’t quite accurate. Psychologists distinguish between declarative memory, or “knowing what,” and procedural memory, or “knowing how.” It’s mainly declarative memory that’s lost, while large portions of procedural memory remain intact. For example, while dementia patients frequently forget the names for words and things (declarative memory), they’re still able to carry on meaningful conversations (procedural memory).

With this observation in mind, Francis and colleagues decided to do what few Alzheimer’s researchers have done before. Previous studies have typically described the disease from the outside—that is, from the point of view of doctors and caregivers. Instead, these researchers decided they would learn about what it’s like living with Alzheimer’s from the patients’ own words.

To this end, Francis and colleagues interviewed 52 individuals at various stages of Alzheimer’s. Patients in the early stages of the disease were generally aware of their memory loss and could describe how it had impacted their lives. By the later stages, though, patients were but vaguely aware of their memory loss, and they generally displayed considerable distress when reminded of it.

Since late-stage patients lacked sufficient self-awareness to describe their own situation, the researchers attended more to the emotional significance of their speech rather than the literal meaning of it. For instance, one of the male patients who had been a successful businessman insisted that he wasn’t an inmate at the institution where he resided but rather that he worked there. His job, he said, was to “look after the girls.” During the interview, he was friendly and cheerful but assertive, reflecting the personality characteristics he’d exhibited before dementia, according to reports from family members.

This patient had little memory of his past life and was clearly delusional about his present circumstances. In that sense, he’d lost his “self,” knowledge of who he was and who he’d been. At the same time, he was still his “same old self,” in the sense that his personality hadn’t changed.

Consistently across interviews, the researchers found the same pattern when they compared their observations of these patients with their family members’ reports. Even when all personal knowledge was gone, personality persisted.

This brings us back to the distinction between “knowing what” declarative memory and “knowing how” procedural memory. Autobiographical memory is “knowing what,” and this is what’s largely lost in Alzheimer’s. However, personality is defined by psychologists as an individual’s typical ways of thinking, feeling, and behaving. In other words, personality resides in “knowing how” procedural memory, which is mostly spared.

Another procedural capacity that’s retained even in the late stages of Alzheimer’s is the ability to read the gestural and facial expressions of emotions in other people. Since these patients have little understanding of the meaning of the situation they currently find themselves in, they instead rely on the emotional cues of others to know how they should feel at any given moment.

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From this observation, Francis and colleagues offer a word of advice. If you’re caring for a loved one with dementia, the best thing you can do is to keep every interaction as emotionally positive as possible. Smile with them, laugh with them, and give them hugs to elicit as many good feelings as you can.

Particularly counterproductive is reminding patients of their memory loss. Remarks such as “Grandma, you’ve already asked that question three times” do not help. While they express your frustration with your loved one’s condition, it will only make them feel worse.

Early-stage Alzheimer’s patients are frequently distressed because they’re aware of their memory loss and what the future holds in store for them. But by the later stages, they’ve mainly forgotten about their memory loss and are no longer distressed by it—unless they’re reminded of it.

You can’t bring them back to reality by reminding them of what they’ve forgotten; there’s no use in making them upset. Instead, the best thing you can do for your loved one with dementia is to make every interaction you have with them as pleasant and positive as possible, regardless of whether they’re “in reality” or not.

Caring for a loved one with Alzheimer’s can be a demoralizing experience. As you see their mind slipping away, you desperately want to pull them back to the real world, bring them back to the person they once were. But this is a fool’s errand. Instead of focusing on their memory loss, turn your attention instead to that part of them that still remains—their personality. Laugh with them, show them that you love them, and you’ll make their day. That’s all that you can do for them, and it’s all they want from you anyway.

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