Written by: Ada Zhou
Edited by: Maggie Wang
Introduction
As the 7th leading global cause of death, Alzheimer’s disease is far from uncommon. It currently affects almost seven million people and their families annually in the US alone (Alzheimer’s Association, 2024). Despite its widespreadness, most people only recognize Alzheimer’s disease by its infamous symptom of memory loss. However, memory loss is just one aspect of a very complex condition. Alzheimer’s cognitive symptoms, although overlooked, can have profound effects on a person’s behavior. Not recognizing the full scope of these changes contributes to the stigma that individuals with Alzheimer’s are rude or socially inappropriate, which hinders the level of respect and dignity they receive during social interactions, causing them to feel emotionally and socially isolated. In this article, we’ll explore the common misunderstandings surrounding the behavioral symptoms of Alzheimer’s disease, and how, by grasping the full extent of them, we can recognize their behavioral changes as neurological rather than intentional, so that they’re treated with the level of dignity and respect they deserve.
Understanding the Misunderstandings, Neurologically
Brain shrinkage, a type of neurological damage where “build-ups of protein form amyloid plaques and tau tangles” (National Institute on Aging, 2023) cause brain cells to atrophy over time. While healthy aging typically involves some degree of brain shrinkage, a brain with Alzheimer’s undergoes far more extensive and widespread brain shrinkage, starting with the hippocampus and surrounding regions that are believed to be responsible for learning, attention, and memory formation and recall. As a result, individuals with Alzheimer’s often get lost in familiar places and forget recent events or conversations. This memory loss is the most well-known symptom of Alzheimer’s and often the first sign people associate with the disease.
On the contrary, the impacts of brain shrinkage on the cerebral and prefrontal cortexes during the progression of Alzheimer’s disease are not as well-known. Damage to these areas directly interfere with individuals’ judgment, decision-making, and behavior, causing increased impulsivity or socially unconventional behavior, such as making sudden noises in quiet settings, or blunt comments that may come off as rude. While it’s a natural reaction to feel discomfort or offense, it’s important to keep in mind that their behaviors are indicative of the neurological damage to areas of the brain that would otherwise allow them to behave more socially appropriately, rather than a matter of choice. Similarly, repeatedly asking about trivial things, such as where to sit or what to eat, is not necessarily equivalent to a deliberate lack of effort to take initiative of tasks, but seeking reassurance to make up for their indecisiveness due to impaired decision-making.
Language is another of the most notable functions of the cerebral cortex. Those with Alzheimer’s often have difficulties coming up with the “right” words, a symptom formally known as anomia. Related words, such as “book” instead of “newspaper,” or substitutes for words, such as “thing you sit on” instead of “chair,” are typically used. While this is not usually disruptive to others, the individual can get frustrated with their own inability to communicate effectively, leave their sentences unfinished, or become withdrawn, which can be misinterpreted as rudeness. On the flip side, individuals’ difficulties with comprehending speech may frustrate those who are trying to communicate with them, even if they are aware of the individual’s condition. This can make the individual feel guilty or inadequate, further contributing to their social withdrawal.
How to Do Better
In order to foster an environment where individuals with Alzheimer’s feel supported rather than judged, it’s essential to adjust the way we approach communication with them.
First and foremost, patience is key. Instead of rushing or becoming frustrated when an individual is trying to find the right words or repeatedly asks for clarification on trivial matters, take a moment to calmly offer them reassurance, like:
“Take your time.”
“No rush, I’m listening.”
While avoiding complex questions, using simple language, and maintaining a warm, friendly tone are also helpful, it’s important to note that this does not mean to treat those with Alzheimer’s like children. In fact, infantilization of Alzheimer’s patients may feel very dehumanizing, and reinforces insecurities that they are less competent or less deserving of respect due to their condition. Despite well intentions, cutting them off to finish their sentences for them, baby talk, and making decisions for them strips individuals of their dignity, autonomy, and sense of self, “[bringing] about undignified treatment of and harm to those who have previously lived more autonomous lives,” (Jongsma & Schweda, 2018). This approach reduces them to the status of a dependent child rather than adults. Instead, providing gentle prompting, such as suggesting a word they may be searching for, is a much more supportive and effective way of communicating with them. Subtle prompts in questions to minimize their stress of decision-making, yet still allowing them the autonomy to communicate on their own is recommended. For example, instead of asking “How do you feel?” it’s better to ask “Are you feeling sad?” (National Institute of Aging, 2024).
Conclusion
Taken together, Alzheimer's is a complex disease that comes with significant emotional, cognitive, and behavioral challenges for both a person and those around them. Today, as the population of the United States continues to age, the increasing incidence of Alzheimer’s disease makes it even more crucial to understand the neurological background of the disease. It provides not just a more holistic perspective of its behavioral changes, but also fosters greater compassion for supporting those affected by it, ensuring that these individuals are met with empathy and patience–not stigma.
References:
Alzheimer's Association. (2024). Alzheimer’s disease facts and figures. Alzheimer’s
Disease and Dementia; Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/facts-figures
Jongsma, K., & Schweda, M. (2018). Return to childhood? Against the
infantilization of people with dementia. Bioethics, 32(7), 414–420. https://doi.org/10.1111/bioe.12458
National Institute on Aging. (2023, April 5). Alzheimer’s Disease fact sheet. National
Institute on Aging; National Institutes of Health. https://www.nia.nih.gov/health/alzheimers-and-dementia/alzheimers-disease-fact-sheet
National Institute on Aging. (2024, July 11). Communicating With Someone Who Has
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