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The concept of dementia is one that has divergent understandings. Dementia is understood as a chronic or persistent disorder of at leasttwo mental functions caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning, resulting in the inability to perform daily activities. Dementia is most heavily associated with Alzheimer’s disease, which is currently the most common occurrence of progressive dementia. Named after Dr. Alois Alzheimer, the disease was first identified in a female patient in 1906, creating a distinction between forgetfulness as a result of old age, dementia, and Alzheimer’s.
Dementia is not a disease, but rather a condition that is most often found with Alzheimer’s patients.. To suffer from dementia does not just mean to have memory loss, but also includes depriving the affected person of their everyday capabilities. This is turn robs the average dementia person of their own life and independence, leaving them in a limbo where one is both living but simultaneously not living (figuratively speaking).
How the demented and those around the demented perceive them changes in different cultures. Dementia comes with both great understanding and empathy as well as diversified stigmas within disparate cultures. The main purpose of this paper is to understand the history and sympathy of dementia in various cultures. Furthermore, I find equally as valuable to examine the person with dementia, and the person living with a dementia patient, and how both groups perceives themselves and their circumstance.
Within Western culture, dementia is often synonymous with Alzheimers disease, a type of dementia that is progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes.
 Within America alone, those diagnosed with Alzheimer’s dementia has reached 7.1 million, and number which continues to grow. America has neither escaped developing its’ own stigma towards dementia, nor denied progressive thought and research into attempting to understand the demented. As with other cultures, the period of old age has continuously been stigmatized, where mental loss is often placed side by side with growing age. Where increase in age has frequently been associated with a wealth of wisdom, the pre-World War II era saw the demented as defective elders, stigmatizing them as being just as dependent as a child. This taints the ideal experience of aging, which is prevalent in many cultures. Yet these conceptions of dementia and ongoing stigmas often stem from anxieties regarding the self, as opposed to ignorance of disease.
Representations of old age have been misconstrued and misunderstood since the late nineteenth century. At this time, American thought associated senility with modernity. Dementia was thought to be a result of the fast pace of the industrial and postindustrial age—a change in pace that the old could not keep up with. To mediate this idea, the image of the senile was developed as a means to manage anxiety of the self under liberal capitalism. This stereotype served as an explanation for lost ability in a time that demanded a high level of ability and provided comfort for the fear of lost memory.
Many American stigmas have been posed towards the senile. In the 1870s and 80s, George Miller Beard pioneered the diagnosis of neurasthenia, which deals with emotional instability, and in turn further added to the ongoing anxiety of a postmodern America. However, Beard was one of the first neurologists to scientifically legitimize dementia as a result of old age. In his Legal Responsibility in Age, Beard stated that the brain determined the mental and moral faculties of a person, and that the brain is subject to deterioration initially before the body as a result of its complexities, which in turn would lead to a decline in mental, reasoning and moral agencies. Beard’s senile man soon morphed into the image of the angry, mean-spirited, perverse old man as a result of lack of moral judgement, similar to some stigma veered towards dementia in Buddhist thought and culture. Beard’s diagnosis only added to the stigmatization of the senile, this time holding value in the modern medical field.
It wasn’t until the development of Gerontology, the study of aging and older adults, that provided a substantial medical analysis of dementia, recasting the image of senility and old age post-World War II. Many groups including doctors, scientists, activists, and entrepreneurs began to explore the “gray market,” meaning they once again started to challenge previous stigmas, concerning themselves with improving the care of the elderly rather than viewing them as senile. Similar to the fear of being isolated or placed in a care-home that takes place in the Polish and Laos communities, these gray market groups were concerned with this abandonment of the demented, which they saw as a possible limitation of the prosperity of America since this older group suffering from dementia were a large portion of the American population. Ostracized and excluded from modern society, they no longer had a place nor purpose, abandoning the wise old man’s traditional image in society. The importance now focused on removing the anxieties and fear of old age and eliminating stigmas that restricted the elderly from have a role in society.
By the late 1970s, senility had been properly diagnosed as Alzheimer’s disease, placing an emphasis on an uncontrollable decline that the demented had no control over, and therefore had no control over their mental decline, and as a result, their moral decline as well. Concurrently, the emergence of nursing homes and long-term care facilities started to become an option to create a community for these elders.
Somewhat similar to care facilities in America, Japanese culture places an emphasis on maintaining an upstanding community for its’ elders. It also views dementia as part of the discourse of growing old. This is also conducive to mediate the exclusion elders with dementia often fear or withstand. However, Eastern culture differs from Western culture, and naturally the Japanese approach and understanding of Alzheimer’s can vary from the American model. The realization that dementia is natural and comes with the aging process is important within Eastern culture, where instead of viewing dementia as a disease, it is an occurrence that may or may not naturally affect a person. John Traphagan discusses one of the Japanese advances to foster this sense of community:
Rather than being centered around learning to cook, the classhad as its focus two key issues that are closely tied to conceptualizations ofgrowing old in Japan: (I) being involved in group activities is essential for a goodold age, and (2) maintenance ofhealth in old age, in part accomplished throughsuch group participation, is a social and moral responsibility that is fundamentalto being a good rojin (old person).
The connection between loss of memory and loss of judgement has already been stated; Where previously I noted that at one point, the demented were often considered perverse as a result of their loss of judgement, especially among a post-Industrial America, the Japanese community mediates this issue and attempts to eliminate this image. The concept of the “rojin” maintains the integrity of the aged person—it is my own understanding that through the community, the elders who have both retained and suffered loss memory are accepted. Furthermore, this culture respects the wisdom that comes with age. This emphasis on helping the aged retain and understand moral standards and continue a socially active life demonstrates that dementia is not heavily stigmatized within the Japanese community.
Religion and culture often come hand in hand when dealing with dementia. Both those who show symptoms of dementia and those who are the caregivers often turn to religion as a means to cope with this difficulty. For example, Latino/Hispanic cultures (i.e. Spain, Central and South America, Cuba, etc.) place a great emphasis on personal family care when it comes to loved ones who suffer from Alzheimer’s disease. A majority of this community practices Catholicism, and finds solace within their own Catholic community as they cope with the circumstance. The Alzheimer’s patient often retains their religious beliefs even as the disease slowly robs them of their own memory. As a sense of self diminishes, there is still a remaining facet of identity based on culture and religious background; (this is often lost in the final stages of Alzheimer’s along with most functions).
Since the Alzheimer’s patient can come from any cultural background, it has become most effective to utilize person-centered care. Furthermore, a person’s culture can shape his or hers natural identity, therefore it is clear that the dementia care must always be considerate of ethnogeographic differences and distinctions. This not only address one’s personal needs, but helps maintain some semblance of one’s self when their memory is becoming unreliable. However, beyond these systems of care and understanding lies an even greater question—how do those affected with Alzheimer’s view themselves and understand/cope with their circumstance? Whereas different cultures may perceive dementia in varying ways, dementia escapes the restraints of these perceptions. Meaning, those affected by dementia often share the same circumstances—the environments are both culturally different yet their mental domains follow similarly as their perception of self and manner of acting deteriorates en suite. The Alzheimer’s patient’s battle lies within himself. In Memory Sciences, Memory Politics, Ian Hacking understands the importance of memory in relation to personal perception, “the idea that what has been forgotten is what forms our character, our personality, our soul.” Those who suffer from dementia know this all too well—as their Alzheimer’s progresses, their memory diminishes and with that, they lose a sense of themselves. There is a relation between the lost of memory and the stigma that is carried with the diagnosis of Alzheimer’s dementia. This stigma is often rooted in the behaviors that develop with the condition. As one would expect, losing one’s own memory is not agreeable for most. Patients often become angered and confused as their basic functions, such as being able to care for oneself in the most basic manner or even basic communication with others, are striped away, leaving those affected feeling as if the have almost been robed of their own life. The disease is so progressive, it leaves them helpless. The anger and confusion born out of this circumstance is often what contributes to the negative stigma geared towards Alzheimer’s (i.e. the perverse old man mentioned previously). Effective communication with these elders is not commonly known, and it is this ineffectiveness that leads to a misinterpretation of behavior, which in turn creates the controversial image of the standard senile problematic behavior. It is also then this stigma that creates fear within the person whorecognizes something is wrong, but does not seek help from others.
To elaborate and further understand the sense of helplessness birthed from the disease, we can examine Michel Foucault’s poles, anatomo-politics and bio-politics, his concept of “two poles of development linked together by a whole cluster of relations.” Essentially, clusters of importance and that relate to each other and are linked together by understanding personal development. Ian Hacking finds that there is a third pole, the memory-politics of the human soul, which is the most explicable of regarding dementia:
What is memory-politics of a politics of? Of the self, the ‘subject’ or the human mind? Or of those substantivized personal pronouns, ego, me? I prefer to say a memory-politics of the human soul, not a popular word nowadays. Philosophers of my strip speak of the soul not to suggest something transcendental or eternal, but to invoke character, reflective choice, self-understanding, values that include honest to others and oneself, and several types of freedom and responsibility.
It appears then that there is a connection between the memory, mind, and soul, all three elements that are integral to a persons identity. If the soul is where a persons character is fostered (“the soul has been a way of internalizing the social order”), and the soul is influenced by memory, I question what state an elder with dementia is left in when all these faculties have failed him or her. Referencing back to Locke, Hacking notes that “the person is constituted not by a biography but by a remembered biography.” A man may have his whole life recorded, but if he cannot not recall it or himself, it becomes frustratingly impossible to understand his place in society while existing with dementia. Locke is positive that memory was the sole constitute of creating a persons identity. Finally, Hacking describes the clinical idea of what forgetting i, and it is extremely similar to the perception of forgetting in relation to dementia:
Ribot’s Law of Regression:
Bearing this proof in mind, we finally explore how the Alzheimer’s patient perceives themselves. Hacking writes that “the principle difference between memory images and ideas and perceptual images and ideas is that perceptions are always more ‘vivid’ than memories.” Since the patient no longer can rely on their memory, their current perception is what they must rely on.
There are numerous accounts of Alzheimer’s patients, recounting their lives to be recorded. However, there is an emphasis on art therapy as a way for one to cope with their changing circumstance and remember their self separately from the disease. Some of the art produced exemplifies this changing perception of self. The degradation of the mental state described above can clearly be seen in the patients own self-portraits. The most notorious instance of this is the case of William Utermohlen, an artist, who after being diagnosed with Alzheimer’s in 1995, began to record his own self-portrait as a means to remember his identity:
Alzheimer’s and dementia care continues to be a challenging field both to observe and understand, as well as be part of. Currently, there is no cure for Alzheimer’s despite significant scientific research. Dementia is understood by many cultures to be part of the aging process, and those who suffer from the disease are respected within their communities generally. To conclude, culture and identity are clearly related to one another, and as the Alzheimers patients succumbs further to dementia, s/he loses a sense of both as the memory weakens and vanishes. Cultures of care are varied but similar in many ways, while the patient suffering from dementia searches for their own self-identity at a time when their own memory fails them.The first image depicts Utermohlen shortly after his diagnosis. The following self-portraits demonstrate an loss of self perfection, as eaac one becomes increasingly more abstract. The final image (2000) barely represents a man at all. It is clear that the Alzheimer’s patient no longer has a sense of identity as his memory disappears with the progression of the disease.
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