The Extent of Loss of Self Identity in Alzheimer’s Patients

Alzheimer’s, a neurodegenerative disease, had an estimated 6.1 million diagnoses as of 2020 and will continue to rise in numbers to 13.8 million by 2060. The damage to neurons causes a strip in cognitive functions and memory that affect the older population on a progressive level. Oftentimes, a patient will develop Alzheimer’s up to 20 years before seeing symptoms of memory loss and cognitive degradation (Alzheimer's Association, 2024). As the global population of seniors continues to grow and humans begin to live for longer periods of time, Alzheimer’s becomes more abundant. Currently, there is no cure to Alzheimer’s, which makes it a disease many are forced to accept, rather than fight. The lack of medical solutions instills a sense of fear amongst future patients, which leads to rash decisions such as preemptive suicide, which stems from the feeling of discontinuity in who they used to be versus who they will be after Alzheimer’s. The correlation between memory and self identity has been studied and theorized over time, stemming from the Lockean Theory that claims the continuity of memory determines one’s self identity. However, traditional theories like this have been criticized through modern studies surrounding the effects of dementia-related illnesses (Lännström, 2007). Memory loss due to Alzheimers does not strip one’s sense of self identity due to the disease’s exclusive focus on episodic memory, personality, and individual perspective. While ethical concerns rise surrounding patient liability and stability, the continuity in self identity alleviates legal apprehension.  

Episodic memory, which is mainly affected by Alzheimer’s, is reconstructible and could be false through perception, which makes it an inaccurate representation of self identity.

Episodic memory surrounds the questions of “what, where, and when,” rather than semantic memory, which is more about general knowledge (Klein, et al., 2012). This type of memory stems from personal interpretation (whether true or false), which varies from person to person, and can be reconfigured from an external narrative. The destruction of episodic memory has proven to not erase one’s sense of self identity through a 2017 journal written about Alzheimer's patients and the changes in behavior seen through caregivers and family members. For example, in one scenario, an Alzheimer’s patient found out her daughter resigned from a job. In response, the mother called her daughter to ask why she quit her job and even offered to get her a lawyer out of worry (Baylis, 2017). This shows that even though the patient lost the cognitive ability to know how to get a lawyer, or the episodic memory of what her daughter’s job was, she still retained her motherly identity in regards to the situation. The same journal begins to focus on the importance of recognition and states, “Ultimately, the granting of recognition by others is about living in the company of others who both acknowledge and instantiate another’s presence. In such circumstances, recognition is more about being remembered and less about remembering” (Baylis, 2017, 219). Recognition plays a powerful role in rebuilding memory in Alzheimer’s patients. With the numerous social roles that people play in others’ lives, recognition can piece back different parts of episodic memory that correlate to different instances of a patient’s life. For example, a sibling identity in a family setting, a coworker identity in a workplace setting, or a student identity in a classroom setting. In a 2017 study on the narrative self, researchers from Tampere University and Waseda university found that self identity can still be maintained by social interactions and continuation of shared recollections. Although episodic memories are lost, self-identity continues to be shaped when dementia patients continue to participate in these means of memory reconstruction (Hyvärinen, 2017). This proves that Alzheimer’s cannot create a loss of identity, since these memories are able to be reinstated through various interpersonal connections. 

Alzheimer’s has a more significant impact on one’s personality, which is shown to be exceptionally different in comparison to shifts in personal identity and morals. The 2017 journal on Alzheimer’s patients stated, “Personal identity is different from personality, insofar as it cannot be reduced to inclinations and character traits. Personal identity is the narrative integration of a person’s lived experience into a dynamic autobiographical story” (Baylis, 2017, 215).  This claim alludes to the idea that personal identity is much more complex and harder to deteriorate than the impermanence and fluidity of personality. A study based on neurodegenerative diseases discussed how patients with frontotemporal dementia (FTD), which affects moral behavior, are seen as more different and changed than Alzheimer’s patients. When comparing the two groups of patients, individuals stated that although their family members with Alzheimer’s forget who their family was, they still acted like the same person they always were. However, FTD patients that were previously seen as kind and caring, began to shift towards being more rash and selfish (Strohminger, 2015). This leads to the conclusion that the loss of morals and a shift in personal identity change a person much more than the loss of memory. A study from the University of California and the University of Arizona on memory’s relation to self identity focused on a key factor that sets memory loss and identity loss apart: bipolar disorder. They described how split personality cases, such as bipolar disorder, suggest personality can drastically change without the change in memory (Klein, 2012). However, this study also found that caregivers and family members felt that these patients had not changed their identity, just their lifestyle due to their sporadic emotional episodes. When comparing the shifts in personality versus personal identity, these examples of neurodegenerative diseases vary based on which part of the brain is being affected, proving that heightened emotions and memory loss change an individual much less than shifts in morals. This demonstrates that when limiting the effects of Alzheimer’s to memory loss, changes in identity often result from other diseases that are more directly conducive towards complete personality shifts, rather than amnesia. 

Alzheimer’s only impacts the individual perspective on memory, rather than the external factors that people often use to perceive their lives. A study on the preservation of self in dementia related cases discussed the Affect Control Theory(ACT) that states that emotions shape and sustain identity through social interactionism, which is about how society builds up self identity (Francis, 2020). This claim came from research done in care facilities based on ethnographic observations of how dementia patients emotionally reacted to both familiar and unfamiliar situations. Emotional consistency was seen in these patients on how they would have reacted to the situation and how they currently react. This proved that emotions played a huge role into a person’s identity, whether or not they remember their past selves. The 2017 study on narrative self from Tampere University and Waseda University considered the importance of the Narrative Theory and the Positioning Theory. They co-align to define a general theory on how people tend to use stories to construct their life and position themselves in the context of the story to develop a sense of belonging and recognition (Strohminger, 2015). Thus, positioning theory argues that identity is fluid and shifts through social interactions. Interactive positioning amongst patients and caregivers alludes to the importance of the emotional connection in self identity and how providing patients with a sense of narrative belonging allows them to retain their social identity. This plays well into the Social Identity Theory, where group membership and intergroup relations are seen to be an important aspect of an individual’s self identity (Deaux, 2020). This directly counters Locke’s Theory that identity degrades with the loss of memory; however, these theories suggest that identity is much more complex and continues to be built off of experiences and interactions, rather than individualistic memory. Richard Heersmink, an assistant professor at Tilburg University, argued that memory is not just subjected to the brain, but is extended through writing, technologies, and shared social impacts. He believed that Locke’s theory is too narrow because it restricts memory to only an individual's perspective, rather than the external tools that have the ability to store a memory (Heersmink, 2017). This results in the idea that self identity is dynamic and is extended across a network of shared memories, which have the ability to be reconstructed and reimposed into a patient. 

Opposition towards the claim of continued self identity have arisen through ethical concerns regarding the accountability of dementia patients in crime related aspects, as well as their ability to make critical decisions as a current patient. For example, is a patient responsible for a crime they committed that they do not remember due to their dementia (Strohminger, 2015)? Since Alzheimer’s is not an FTD, a patients’ decision to commit the crime does not come from their involuntary shift in morals, and thus was a conscious decision. However, the disease makes most patients prone to anxiety and fear through their realizations of memory loss, so ensuring well qualified caregivers are nearby at all times will greatly help to reduce crimes, while also providing freedoms that allow for expression of identity. Secondly, the idea of pre-emptive suicide becomes complicated if the patient prior to succumbing memory loss was for it, while their current decision is against it (Davis, 2014). Acknowledging the continuity in self identity leads to the conclusion that they are still emotionally connected to their past self, which makes their current decisions an equal priority. While many may argue that implementing the idea of persisting self identity is insensitive to the struggles these patients experience, it actually opens up ways for society to view Alzheimer's as less of such a harsh disability and for family members to treat these patients as present and available people.

Understanding that Alzheimer’s has a more substantial impact on episodic memory, personality, and individual perception, provides a more positive outlook on the preservation of self identity when faced with severe memory loss. Over the centuries that Alzeihmer’s has been present, there is still no present cure to the disease and all patients live out their years undergoing a slow progression of memory loss. Currently, biomedical solutions have been seen to overlook patient experience  (Fitzpatrick, 2018). Instead, research should be more focused on improving their way of life by ensuring that caregivers practice forms of present positioning, using external tools to build episodic memory, and valuing their post-diagnosed decisions. Through the use of technological communication, music, caregivers, and improved infrastructure for patients, their living conditions can be significantly improved upon (Fitzpatrick, 2018). It enforces the continuity in freedom and choice amongst these patients, through the prioritization of their current decisions and the action of present positioning in order to treat them as the same person they always were and will be.  Viewing these patients with the same integrity and emotional support is important for future diagnosed patients to feel less paranoid and extreme about becoming an Alzheimer’s patient. 

Works Cited

Alzheimer’s Association (2024). 2024 Alzheimer’s disease facts and figures. In AP Seminar performance task 2: Individual research-based essay and presentation direction and stimulus materials (70-75). College Board. 

Baylis, F. (2017). STILL GLORIA: PERSONAL IDENTITY AND DEMENTIA. International Journal of Feminist Approaches to Bioethics, 10(1), 210–224. https://www.jstor.org/stable/90012263 

Davis, D. S. (2014). Alzheimer disease and pre-emptive suicide. Journal of Medical Ethics, 40(8), 543–549. http://www.jstor.org/stable/43283064 

DEAUX, K., & BURKE, P. (2010). Bridging Identities. Social Psychology Quarterly, 73(4), 315–320. http://www.jstor.org/stable/27896243 

FITZPATRICK, S. (2018). Asking the Right Questions in Alzheimer’s Research. Issues in Science and Technology, 35(1), 77–79. https://www.jstor.org/stable/26594290 

Francis, L. E., Lively, K. J., König, A., & Hoey, J. (2020). The Affective Self: Perseverance of Self-Sentiments in Late-Life Dementia. Social Psychology Quarterly, 83(2), 152–173. https://www.jstor.org/stable/48588970 

Heersmink, R. (2017). Distributed selves: personal identity and extended memory systems. Synthese, 194(8), 3135–3151. http://www.jstor.org/stable/26748901 

Hyvärinen, M., & Watanabe, R. (2017). Dementia, Positioning and the Narrative Self. Style, 51(3), 337–356. https://doi.org/10.5325/style.51.3.0337 

Klein, S. B., & Nichols, S. (2012). Memory and the Sense of Personal Identity. Mind, 121(483), 677–702. http://www.jstor.org/stable/23321780 

Lännström, A. (2007). Locke’s Account of Personal Identity: Memory as Fallible Evidence. History of Philosophy Quarterly, 24(1), 39–56. http://www.jstor.org/stable/27745077 

Strohminger, N., & Nichols, S. (2015). Neurodegeneration and Identity. Psychological Science, 26(9), 1469–1479. http://www.jstor.org/stable/24544087