The Social Construction of Alzheimer's Disease

Alzheimer’s disease has an unclear history that is being reevaluated. Some theorists feel that Alzheimer’s disease was caused by a series of events. As advances in science should make the cause of Alzheimer’s disease clear and concrete and the development of sound treatment options a reality, the advances in science and technology are instead showing that Alzheimer’s disease may instead be just a natural part of the aging process. Bioethicists are urging for pre-natal screening of infants for dementia and other possible hindering abilities in the hope that people will voluntarily choose to abort their fetus or euthanize newly born babies born with impairments.
On the opposite end of the age continuum, the debate over assisted suicide, especially for the elderly, has long had no resolve. A new trend by the medical community is to urge people at risk for dementia, mild cognitive impairment, Parkinson’s disease, and Alzheimer’s disease to voluntarily end their lives for the sake of preserving their intrinsic happiness or to not burden family. By explaining the history, construction, and deconstruction of Alzheimer’s disease, this paper can then explore the treatment of people with Alzheimer’s disease and related dementia and better assess the issue of assisted suicide.
According to Gaines and Whitehouse, two authoritative researchers who have spent decades studying Alzheimer’s disease, Alzheimer’s is a natural disease. The goal of their paper “Building a Mystery: Alzheimer’s Disease, Mild Cognitive Impairment, and Beyond” is to explain the medical and social construction of Alzheimer’s disease, “evaluate the cultural and ethical significance of recent developments in Alzheimer’s disease research, and the latest extension of Alzheimer’s disease- MCI (mild cognitive impairment)” (Gaines and Whitehouse 61). Dr. Alois Alzheimer was a German neuroscientist who worked in psychiatry. In 1906, he noticed what he considered to be empirical evidence for pre-senile dementia. As dementia was already considered an affliction that was extensively categorized by another German psychiatrist named Emil Kraepelin, who was working on a paper for publication, Kraepelin did not consider there was enough of a statistical difference to separately list Alzheimer’s in his paper or grant Alzheimer’s a “disease label” (Gaines and Whitehouse 63).
Alzheimer’s disease (AD) was largely ignored until 1971 in which Kraepelin wrote a second paper detailing the various types of dementia. Gaines and Whitehouse explain that Kraepelin labeled Alzheimer’s findings on the differences of amyloid plaques neurofibrillary tangles in part because of “personal ties and mutual affiliation with the Royal Psychiatric Clinic in Munich” (63).At the time, there were only two reported cases. The advent of staining showed that the two people diagnosed with Alzheimer’s disease had lesions, but autopsies revealed these lesions were not identified with the plaques and tangles Alzheimer noted. As such, there was still not etiology for Alzheimer’s disease (63-64).
Starting in the 1960’s there was a movement from the medical community to show that Alzheimer’s disease was separate from the aging process. The use of the electron microscope, both in the United Kingdom and the United States, helped to construct the disease. Two scientists said they found the same data, but they interpreted it differently. The differences in interpreting the data made Alzheimer’s disease an ideal candidate for extensive research. Over time, risk factors became clear but the medical community was still no closer to discerning the etiology of Alzheimer’s. Interest in the scientific medical community kept increasing throughout the discovery and use of neurochemistry and genetics, but there was no funding available for continuous research in the hope of discovering the disease’s origin (Gaines and Whitehouse 64).
Finally, political and social forces joined together to “transform a rare condition into a common condition” (Gaines and Whitehouse 65). The scientific medical community had to separate the disease from the aging process and they had to find a reason to request funding. During the sixties, there was a boom in the aging population. While the elderly were not a cause for funding medical research, the fact that people were getting older and living longer was a worthy cause; coupled with the increase in consumerism, biomedicine and bioethics began to advance in new directions (Gaines and Whitehouse 65).
Consumers began to question their doctors, medical research, and the medical community as a whole. Medical efficacy, paternalism- keeping conditions or the truth about medical conditions from a patient, and practice became issues of concern for the medical community, especially with non-physicians entering the field to observe and report on medical practices. Gaines and Whitehouse cite the consumer movement and aging population as the “social factors [that] pushed for research on a condition that was increasingly burdensome to members of the general public…The social impetus for formulation of a disease entity conceptualized in ways that make it appear that the ‘it’ so delineated is or will be treatable and perhaps even curable or preventable; that is to say, there is a development of a discourse of hope” (Gaines and Whitehouse 65).
There is still no concrete cause, and while many factors are said to contribute to Alzheimer’s disease- like exercise, healthy living habits, the inflammatory and\or genetic processes- there is still no treatment or cure. The older theories regarding AD are now emerging again as science and technology reveal there is no genetic understanding for the disease. In 2002, there was a drastic shift in thinking about AD in the scientific medical community. At a conference, the key note speaker said he felt the medical community had hit a wall as, he was certain, no new significant medical findings would be presented (Gaines and Whitehouse 66-69). Thomas Kirkwood reaffirmed this conclusion. Gaines quotes Kirkwood as explaining “[the] processes reified as pathology and disease, such as Alzheimer’s disease, are common and inevitable as the human brain ages” (Gaines 83).
Gaines stands behind Kirkwood in his explanation that aging is the biggest risk factor in causing Alzheimer’s disease. A large amount of chance is also involved in developing Alzheimer’s or other related dementia. Kirkwood explains, “’cells (will be) burdened with protein aggregates and similar materials that will increase with aging. Once again, which cells will experience this fate and which will continue to function healthily is strongly influenced by chance’” (Gaines 83).
The scientific medical community then stopped addressing Alzheimer’s as the vehicle for dementia and began to focus on mild cognitive impairment, which is considered a natural part of the aging process. Gaines and Whitehouse claim that the connection between MCI, which is said to be a precursor for AD, and the disease itself is unclear. MCI is categorized on the “spectrum of the continuum of cognitive aging”, along with Alzheimer’s disease (Gaines and Whitehouse 70). As Whitehouse points out, identifying different kinds of MCI means “studying the heterogeneous processes of brain aging” (Whitehouse 88).
Anne Davis Basting would agree with Gaines and Whitehouse that Alzheimer’s disease belongs on the dementia-related spectrum of cognitive aging. She worked with people who either had AD or had symptoms equal to those of mid-stage Alzheimer’s disease in Chicago and New York. Basting conducted a series of workshops to capture the stories of people with Alzheimer’s disease and related dementia (ADRD), and all of the participants had some form of 24-hour care. Basting points out that people with ADRD have no “ability to comprehend chronological time systems, so they need someone to translate the world for them” (79). Basting hoped that work gathered in these workshops would show the participants as functioning, thinking, creative people rather than as the disease. All of the stories told in both series of workshops had similar themes like “longing for freedom, acceptance, love, and intimacy with family or lovers” (88).
Knowing ADRD people have lost the ability to tell stories about themselves or incidents that happened to them from their own memories, Bastings would give the participants a valued social role to act out. The participants were able to retain the abilities to respond as a group and to shape a story with fragments of their own memories. With each visit, the participants’ ability to relate to each other became more focused, and parts of each person’s personality emerged clearly within the group setting. Basting wanted to give a voice to those who are often shut away and only seen as shells of their former selves. She did give people with ADRD a voice by creating a website, a play, and an art exhibit based on the collected 100 stories compiled from the participants in her workshop. In doing so, she hoped to change the stereotypes of ADRD people from isolated and crazy people to real people with drastically different needs for living (89-92).
Care for people with ADRD is a difficult responsibility. As Bastings points out, by mid-stage Alzheimer’s, most people need 24-hour care. The burden is on the family to decide the appropriate care for their family member. In “Shouldering the Burden of Care,” two professionals are given a case regarding a woman that has dementia. The daughter feels it is her obligation to care for her mother, especially since her mother asked to not be put in a home. Unfortunately, the daughter had to stop focusing on her career and family, is increasingly stressed and anxious, and no longer has the financial resources to care for her mother at home. Her brother does not want to take his mother-mostly because he feels that care is a woman’s responsibility- but he also feels she should not be put in a nursing home. The two medical professionals both agreed that the ethical course of action is to place the mother in the care of professionals who can watch her constantly and give her the level of care she needs and deserves. The concerns the family in the case study has are valid, but they are part of the social construction of Alzheimer’s as a disease as well as the myth of control, directly relating to obligations made to the mother (Case Study 14-15).
In the article “Under the Floorboards”, Michael Bavidge reinforces the strength of the conclusions Whitehouse and Gaines have drawn about the foundation of MCI as well as the history of Alzheimer’s disease. Bavidge explains, “We need not worry that values structure the institutions and practices that characterize medicine, but we should be concerned about the influence that commercial interests and political agendas have on the development of medical practice” (77).
The social construction of AD and its 1971 listing as a disease directly relates to the ways in which society views people with ADRD. What scares people most about Alzheimer’s and other related dementia is that these conditions are beyond an individual’s control, yet they transform one’s perception of their identity and sense of self beyond all recognition. The myth of control has taken over with regard to finding the origin of the disease to no avail. People, desiring to have control over the fate of their mental health and natural brain aging, have started making up cures, like the curebies of autism, directly relating to diet, the amount of exposure to aluminum, and various other trends that most likely will not have an impact on whether or not they develop ADRD.
The myth of control has also been used as an excuse. Some bioethicists and genetic counselors are urging people developing symptoms or are at risk for dementia related diseases to take control of what is happening to them by committing suicide. Even worse, some genetic counselors are urging parents to terminate a pregnancy based on the possible quality of life that child will have. These genetic counselors are suggesting these people take control of their own lives, or the lives of their unborn children, and do what is right or good, according to the standards imposed by society.
Conservative bioethics urge for the birth of all lives. In the paper “Conservative Bioethics and the Search for Wisdom,” the author argues that liberals suggest it is okay to abort fetuses with health conditions (Cohen 45). In reality, liberals suggest the abortion of fetuses as it effects the life of the mother; liberals do not feel that any person has the right to grant life or death based on how the child will view their quality of life. Abortion should be solely determined by how the child will affect the quality of life of the mother, in turn effecting the quality of life of the child, if it were to be born.
The decision to have abortions should not be shaped by the myth of control enforcing the societal standards of species-typical function. The myth of control forces the parents in this situation to evaluate how their own lives would have been different if they were born with certain impairments. The myth of control forces the perspective of the “I” self and singular experiences rather than through a collection of possible, positive ways to live. The myth of control and the social construction of disease force people to see there is only one way to be; that way is the social standard of normal.
The same is true for the liberal view of suicide. Suicide, especially assisted suicide, is a personal choice that should be based on one’s own desire to live or not. It should not be based on if one is at risk for developing or has ADRD or any other condition that reflects various types of species typification. An important person in the shaping of the decision of pregnancy termination will be the genetic counselor.
Genetic counseling is becoming increasingly important in our society. Genetic counselors meet with families considering terminating pregnancies and will act as an advisory mediator between geneticists, medical professionals, and patients of said professionals. Patterson and Satz take a feminist stance to this new, important societal role. More importantly, genetic counselors are integral to shaping the societal views and attitudes of people with disabilities and impairments. The authors state that the “attitudes and actions of genetic counselors influence the material situation and the self-concept of those with disabilities” (Patterson and Satz 118).
It is sad that our society has so many social constructions, like chronological time and organizing systems, that American culture is not yet accommodating for many members who experience a natural part of the aging process. The American world exists for those who are capable of bringing in wealth to strengthen the nation; it seems to not yet be able to acknowledge there are many ways to accomplish the same tasks. Care for our own relatives becomes a burden, impeding individual success and social mobility. America has turned the caring for our elderly into a capitalist enterprise, where after a certain point in the aging process, these people who were once valued in their social roles are shut away and ignored. While there is no solution for the natural aging processes of the brain, perhaps American society will begin to make new avenues of care available for those who will also one day be less than abled in some form or another.


Works Cited
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Drama Review 45, 3 (2001): 78-94. Web. Project MUSE Database. 18 April 2010.
Bavidge, Michael. “Under the Floorboards: Examining the Foundations of Mild Cognitive
Impairment.” PPP 13, 1 (2006): 75-77. 18 April 2010.
Case Study. “Shouldering the Burden of Care.” Commentary by Stacy J Sanders and Eva Feder
Kittay. Hastings Center Report September-October (2005): 14-15. Web. Project MUSE
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Cohen, Eric. “Conservative Bioethics and the Search for Wisdom.” Hastings Center Report 36,
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Gaines, Atwood D. and Peter J. Whitehouse. “Building a Mystery: Alzheimer’s Disease, Mild
Cognitive Impairment, and Beyond.” PPP 13, 1 (2006): 61-74. 18 April 2010.
Patterson, Annette and Martha Satz. “Genetic Counseling and the Disabled: Feminism Examines
the Stance of Those Who Stand at the Gate.” Hypatia 17, 3 (2002): 118-142. Web.
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Whitehouse, Peter J. “Demystifying the Alzheimer’s as Late, No Longer Mild Cognitive
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