The Loss of the Sense of Self In Dementia: Why This Phenomenon Should Not Be Undermined In Treating and Researching Neurocognitive Conditions

By Tré LaRosa
NeuLine Health

One devastating consequence of dementias is how they degrade a person’s sense of self. This aspect of dementia has a crater-sized impact on those with dementia, but the progressive cognitive decline also enacts compounded suffering on their loved ones. This, accompanied by mobility issues and executive dysfunction, results in a condition that lays assault on a patient’s central nervous system through their brain. From there, the results are global: Patients eventually become unable to take care of themselves, relying on their families if they have one, and the healthcare system if they don’t. This choice is not fair to a patient, and can often lead to months to years of patient reliance on others, an often dehumanizing result. Further, this becomes costly for the patient — loss of income is costly after all — and can become costly for loved ones, either due to their being unable to work or through needing to afford social services that the patient themselves can no longer afford. 

This reality is part of why it’s so important that we should not neglect the pernicious ways that neurocognitive conditions wreak havoc on patients, caregivers, and their loved ones. We should prioritize these considerations when we determine research priorities, develop clinical trial protocols, and plan much further in the future. A loss of sense of self is a form of death that occurs before one dies, leading patients to become shells of themselves and forget their most cherished memories and loved ones. Unsurprisingly, this can contribute to frustrations, bursts of anger, personal disappointment, anxiety, and depression. What should be prioritized above all else is ensuring patients are provided with the utmost respect, care, and dignity they deserve. With cognitive decline, patients are exposed to additional, sometimes hidden, risks: If their personhood is not considered in all questions of treatment, they can be thrust into unsafe, inhuman, paternalistic conditions where the wishes of others are prioritized.  

Before we delve deeper into how dementias degrade one’s sense of self, let’s actually discuss our sense of self. How we perceive ourselves is not only deeply intimate and personally important, but it’s also fundamentally relevant to questions of clinical research. As the literature expands on psychological health and our understanding of the interplay between our minds and our bodies, patient-reported outcomes and other subjective indicators are becoming more common and influential in clinical research.

The Seven Selves

In the paper “The Seven Selves of Dementia” by Bomicar et al published in Frontiers in Psychology, the “sense of self,” a deeply complex idea, is broken down into seven different selves. It should be noted that while the paper itself titles them the seven selves of dementia, these are selves contained within all of us, not just those with dementia. 

First, there’s the embodied self, which is the mental awareness that one occupies a body. There’s the agentic self, which relates to one’s understanding of their ability to make our own decisions and influence the circumstances of the world around us. You’ve maybe heard of the concept of “implicit bias,” which is our non-conscious response to external stimuli; this is manifested in the implicit self. The critical self is the conscious part of our mind where we define who we believe ourselves to be. Then there’s the surrogate self, which is how we perceive others view us. There are two final selves: the extended self and the emergent self. The extended self is the parts of the world that we associate with who we “are”; this includes our hobbies, our friends and family, and the things we are passionate about. Our emergent self comprises all others and gives rise to something bigger, producing a total self that informs the way we view the world around us. The emergent self is how we endure. 

These selves can be grouped in a hierarchical form: Our critical, implicit, and surrogate selves — all of which act upon each other are the selves that are mental representations of who we are. In contrast, the agentic self is the embodiment of our ability to make decisions. These four selves are contained within our mind (the authors emphasize that the selves are not in our mind, but rather emergent of a series of complex neurological processes), which is part of our corporeal self, while the embodied self — our behavior and physical — is what the rest of the world sees. The embodied self and all of its contained selves then make up the extended self which we associate with our mind and body. Finally, the emergent self contains all other selves. The below figure is a visualization that depicts the interplay between the various selves. The authors write of this framework, “Here, the critical, surrogate, and implicit selves are seen as primarily neurocognitive, regulated by the agentic self. These aspects of the self are embodied, including corporealization, and extended through interaction into the environment, producing the emergent self.”

Figure 1, “The Components of the Self Model (CoSM),” from “The Seven Selves of Dementia” 

The authors, in their effort to capture this abstract idea, emphasize that the different selves are not concrete physical concepts but rather emergent of various processes within the brain and mind. Put differently, it’s difficult to simply attach a specific self to a specific part of the brain.

Loss of self in dementia

Sense of self is not only relevant in those who have lost their sense of self. As evidenced by Bomicar et al’s attempt to capture the different selves, to say somebody “lost their sense of self,” not only doesn’t make sense, but it flattens what that even means and removes the opportunity to discuss nuance. The sense of self has been a research interest for millennia; it’s been contemplated by artists and philosophers, clerics and monks, psychologists and neuroscientists. We all intuitively possess a sense of our self but unless we interrogate and seek to understand the different aspects of our “self,” especially ones that can be at odds such as our implicit, critical, and surrogate self, we might not ascertain when they’ve shifted. The implicit self and surrogate self are of particular interest here. Our implicit self can shift. We can learn about our biases and work to consciously shift how we respond to external stimuli. So while we don’t somehow gain control of the entirety of our implicit self, we can learn and train our implicit self to react differently by practicing. It’s not exactly the same but the same concept applies to muscle memory, or the point at which our brain can control specific muscles with little to no conscious involvement. Professional athletes have a different implicit self when it comes to their respective sport than we do if we were to play against them. 

Our critical self is also interesting. At first glance, it appears to be the one that is most accurate in that we have a conscious belief of who we are, but even this self can be illusory. The Dunning-Kruger effect demonstrates this: We are often very bad judges of our own performance. 

Understanding our various selves is a way for us to improve how we exist in the world — we should view these gradients of the self as a way to improve our selves, to improve how we treat conditions — especially neurological and cognitive ones, and we can also use these lenses to inform how we prevent, treat, recognize, and advocate for people. 

With the understanding that our worldview can be categorized by the different selves evident within us, it becomes clear that how people with dementia can begin to lose their sense of self can be multivariate, discordant, pernicious, and unclear. At first glance, this is a major challenge for the family members and care team since it can be hard to effectively measure worsening dementia — but these distinct selves offer an opportunity to break a complex phenomenon down into more components. Complex problems are hardly ever solved by initially considering all the moving parts. They are usually solved by breaking down the problem into smaller, more easily solved problems.

In the excerpt below, the authors summarize how their framework has important implications when it comes to how we treat — both medically and interpersonally — those with dementia.

It is from these vital sources that a unified sense of self emerges in PwD. Given the richness of these different self-processes, it is clear that overall this is maintained in dementia, even in later stages of the condition. This topic is of considerable clinical relevance, suggesting that when some processes are impaired, others may compensate for their absence, in a self-regulating system. Similarly, disruption of different aspects of the self may interact to produce emergent properties that characterize the experiences of a PwD. Furthermore, external sources, such as the surrogate and extended selves, that constitute the emergent self in dementia highlight our collective responsibility in supporting selfhood externally when neurodegenerative processes have diminished internal sources of selfhood.

Our sense of self, as complex as it is, is of critical importance as we occupy the world. For people with neurocognitive conditions who lose their sense of self, it’s our obligation to ensure they are treated with dignity and as humanely as possible, and it’s our responsibility to prioritize this consideration whenever researching, treating, and advocating for these conditions. 


Patient-Reported Outcomes Part 1 of 2: A Primer

Patient-Reported Outcomes Part 1 of 2: A Primer

Patient-reported outcomes (PROs) are clinical trial measures that capture the patient’s own perspective on how they feel. While they are commonly used in clinical trials, they are also used in the clinic as another measure to gauge a patient’s health over time.

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