The Social Stigma around Alzheimer’s Disease: The Misconceptions & Missing Pieces
- Sofia Ramos
- Mar 29
- 4 min read
Written by Sofia Ramos
Edited by Windy Huang
In the DSM-5, dementia is recognized as a neurocognitive disorder and is called Major Neurocognitive Disorder (MND). However, it has also been used as a term to describe a group of symptoms that affect a person’s memory, thinking, and social abilities (“Dementia - Symptoms and causes”, 2024). The term version of dementia has some limitations, narrowing the word to common associations with both old age and interchangeable use with Alzheimer’s disease (AD). These limitations take away from notable facts. For example, dementia can also affect younger individuals, despite it being associated with old age. Also, Alzheimer’s Disease, while a common cause, is not always the cause of cognitive decline (Emmady PD, et. al, 2022). Alongside these associations, there are negative connotations that can spur from associating dementia with old age and AD. Considering Western societal values, it can be seen that in the United States, individuality, independence, and productivity are seen as important for quality of life. Unfortunately, these qualities are often impacted by AD, which affects individuals with AD’s everyday abilities. Given that Western society can view age through a negative lens, this can cause stress for individuals living with AD. Western values in correlation with the symptoms of AD can create a fear of losing the ability to engage and maintain everyday functions. It can also contribute to harmful stereotypes and stigma around perceptions of individuals with AD (Rosin, E. R., et al., 2020).
To better understand MND and its effects, knowing the criteria is essential. MND is characterized as a significant decline in at least one cognition domain which includes executive function, complex attention, language, learning, memory, perceptual-motor, or social cognition. In other words, a patient’s prior level of cognitive ability declines persistently over time. This specification does not count if the cognitive decline occurs solely with an episode of delirium. Accordingly, there must also be signs of daily functioning being impacted, which can range from managing everyday tasks from finances to personal self-care that involves situations like feeding. Some cognitive changes and symptoms of dementia involve communication problems, visual and spatial ability, issues with complex tasks, problems with planning, confusion, and disorientation. Along with these symptoms, memory loss is usually present as an early symptom of the condition. Additionally, there are also psychological changes that occur, such as changes in personality, depression, anxiety, agitation, levels of suspicion, and hallucinations (“Dementia - Symptoms and causes”, 2024).
Moving forward, there are thirteen casual subtypes of MND. Alzheimer’s dementia is the most common subtype, as it is the reason for around 70% of cases of MND. The subtypes are listed as: “Alzheimer’s disease, vascular disease, frontotemporal lobar degeneration, Lewy body disease, Parkinson’s disease, HIV infection, Huntington’s disease, prion disease, substance and or medication use, traumatic brain injury, another medical condition, multiple etiologies, and unspecified,” (Emmady PD, et. al, 2022).
As aforementioned, Alzheimer’s disease (AD) is a common subtype and cause of dementia. It is also a progressive dementia that can be described as worsening over time and not being able to be reversed (“Dementia - Symptoms and causes”, 2024). The declining symptoms are part of the reason that it faces a social stigma. In this case, stigma can be defined as the use of negative labels when identifying an illness or disability, which can isolate individuals (“Overcoming Stigma”, n.d.). The concept of ‘self-stigma’ is also important to take into account, as individuals may internalize negative stereotypes attached to labels and apply them to their self-perception. The stigma around AD can make those who live with AD feel excluded from their own decisions and communities (Rosin, E. R., et al., 2020). This can occur when others check in with the individual’s caregiver about the individual’s condition, or when others might avoid the individual out of unfamiliarity with the condition (“Overcoming Stigma”, n.d.). In Western society, negative perceptions of age are common, as old age is thought of with the decrease in the ability of an individual to support themselves on their own. Values of surrounding self-reliance can be more difficult for individuals with Alzheimer’s disease to maintain on their own. For these reasons, those who live with Alzheimer’s disease may be seen as ‘non-person’ through stigma because of the loss of functioning and cognitive decline associated with the progression of AD. This can cause persistent perceptions of those with AD being perceived as ‘a burden,’ or ‘unable to contribute to society,’ (Rosin, E. R., et al., 2020).
While the stigma can be difficult to combat and there is no cure for Alzheimer’s disease, there are solutions to better enhance the quality of life for individuals affected by AD. For instance, certain medications can improve symptoms or slow cognitive decline. There are also services to support people who live with dementia and their caregivers (“Alzheimer's disease - Symptoms and causes”, 2024). Using techniques such as face-to-face contact (with full, clear disclosure of the facts surrounding AD), content-based video explanations, or community-based programs can help to diminish the stigma. In terms of community-based programs, there are programs, such as Poetry for Life, where patients with AD, their caregivers, and community members utilize AD-centric knowledge to interact creatively. Along these same lines, educational plans or courses are also beneficial as a supplement to combating the stigma (Rosin, E. R., et al., 2020).
Overall, while the stigma against dementia is harmful to the perception and view of individuals living with AD, there are ways to overcome this stigma and clear up the misconceptions. With the combination of education and community-based approaches, negative views of those living with AD and AD itself can be decreased. The use of creative community programs and clear communication about the facts of AD make it possible to foster a less apprehensive and better enhanced experience for those who experience AD, their family, and their overall community.
References
Alzheimer's disease - Symptoms and causes. (2024, November 8). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447
Dementia - Symptoms and causes. (2024, September 25). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013
Emmady PD, Schoo C, Tadi P. Major Neurocognitive Disorder (Dementia) [Updated 2022 Nov 19]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK557444/
Rosin, E. R., Blasco, D., Pilozzi, A. R., Yang, L. H., & Huang, X. (2020). A Narrative Review of Alzheimer's Disease Stigma. Journal of Alzheimer's disease : JAD, 78(2), 515–528. https://doi.org/10.3233/JAD-200932
Overcoming Stigma. (n.d.). Alzheimer's Association. https://www.alz.org/help-support/i-have-alz/overcoming-stigma
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