History of Science 170 Blog Post #3
Where Are The Male Caregivers?
By Nathan Grant
The statistics surrounding Alzheimer’s disease reveal an interesting story about American culture and society.
Alzheimer’s disease is the most common cause of dementia and is an irreversible, progressive brain disorder characterized by memory loss, impaired cognition, and difficulty with daily living activities.
In his article “Disappearing in Plain Sight,” bioethicist and historian Jesse Ballenger analyzes how stories from people with dementia significantly changed society’s understanding of the disease. Before the 1970s, conditions of dementia such as Alzheimer’s disease were grouped under the concept of senility and associated with widespread anxiety about aging (Ballenger, 2012, pp. 110). These concerns about aging largely emerged around the late 1800s with modern industrialization. As economic pace and productivity increased, Americans grew concerned about whether the aging body and mind could keep up. These concerns led to a stereotype that aging people would become senile, consequently misrepresenting the pathological factors of dementia and fostering harmful stigma toward the elderly (pp. 111).
However, by the 1970s, people with dementia increasingly assumed a public role by advocating and speaking for themselves about their illness. By sharing their stories, writing autobiographic accounts, and joining patient advocacy organizations, people with Alzheimer’s disease and other forms of dementia showed that their condition had clinical characteristics that were different from the natural aging process. As Ballenger explains, stories from people with Alzheimer’s disease demonstrated that the illness “was not simply a matter of going senile, for the disease struck victims in their prime, people who, whatever their age, were active and involved in life. These images [demonstrated that Alzheimer’s disease is] a major killer that required the same level of public awareness and commitment as other dread diseases” (pp. 117). By promoting this widespread understanding, people with Alzheimer’s disease helped make the condition a funding priority for the American government, thereby increasing medical research and support for people with the condition and their caregivers.
With this increase in research, it became clear that women are more likely to develop Alzheimer’s disease than men (pp. 112-113). According to the Alzheimer’s Association’s 2014 report, 1 out of 6 women over the age of 65 are at risk of developing Alzheimer’s disease compared to 1 out of 11 men. Of more than 5 million Americans living with Alzheimer’s disease, 3.2 million are women. Moreover, 60% of all Alzheimer’s caregivers are also women (Alzheimer’s Association 2014). These statistics are appalling. While nearly two-thirds of Americans with Alzheimer’s disease are women, about two-thirds of caregivers for people with the disease are also women. Alzheimer’s disease places a disproportionately larger burden on women.
This then begs the question: Where are all the men? While research is still being conducted to understand the biological differences that place women at a higher risk for Alzheimer’s disease than men, I am curious about the disparity in caregivers. If more women are affected by Alzheimer’s disease (and assuming there are more heterosexual than homosexual couples in the United States), is it at all reasonable to think there might be more male caregivers for people with Alzheimer’s disease? What role do husbands play for their wives who develop Alzheimer’s disease?
The statistics also match the availability of stories and blogs from caregivers. Many blogs about the experiences of caring for people with Alzheimer’s disease come from women. The blog Missing Jim is written by a woman whose husband had early-onset Alzheimer’s disease. The blog Dementia Be Damned comes from a woman who, along with her mother, takes care of her sister Lyn who has an intellectual disability and Alzheimer’s disease. There are few stories from male caregivers – but, perhaps, this might just match the statistics. If this is the case, why do men not readily assume a caregiving role and what can we do to change this?
While Ballenger does not talk about the gendered differences among caregivers in his article, he does mention that societal norms tend to value men in the workplace and women in the domestic sphere (pp. 112). While this is changing today, gender norms may still help explain some of this disparity. When a woman develops Alzheimer’s disease, other female family members or health aides may assume the role of caregiver before men do. This is illustrated in the 2014 movie Still Alice. When Alice’s Alzheimer’s disease progresses to a point where she can no longer live on her own, Alice’s daughter becomes her primary caregiver while her husband continues his job.
As people age and more women are diagnosed with Alzheimer’s disease, we will need more male caregivers than ever before. It is important to challenge and change our norms about caregivers to be able to meet this increasing need. While this will be a difficult task to achieve, I believe we can find some inspiration and guidance in Professor Arthur Kleinman’s work. A professor of anthropology and psychiatry, Arthur Kleinman is leading the way for male caregivers by writing about his own experiences providing care for his wife who had Alzheimer’s disease. Kleinman serves as an example that can inspire other male caregivers to share their stories, too. Just as storytelling helped change society's understanding of Alzheimer’s disease in the 1970s, so too can stories help change the discourse on caregiving to increase care for those who need it most.
Where Are The Male Caregivers?
By Nathan Grant
The statistics surrounding Alzheimer’s disease reveal an interesting story about American culture and society.
Alzheimer’s disease is the most common cause of dementia and is an irreversible, progressive brain disorder characterized by memory loss, impaired cognition, and difficulty with daily living activities.
In his article “Disappearing in Plain Sight,” bioethicist and historian Jesse Ballenger analyzes how stories from people with dementia significantly changed society’s understanding of the disease. Before the 1970s, conditions of dementia such as Alzheimer’s disease were grouped under the concept of senility and associated with widespread anxiety about aging (Ballenger, 2012, pp. 110). These concerns about aging largely emerged around the late 1800s with modern industrialization. As economic pace and productivity increased, Americans grew concerned about whether the aging body and mind could keep up. These concerns led to a stereotype that aging people would become senile, consequently misrepresenting the pathological factors of dementia and fostering harmful stigma toward the elderly (pp. 111).
However, by the 1970s, people with dementia increasingly assumed a public role by advocating and speaking for themselves about their illness. By sharing their stories, writing autobiographic accounts, and joining patient advocacy organizations, people with Alzheimer’s disease and other forms of dementia showed that their condition had clinical characteristics that were different from the natural aging process. As Ballenger explains, stories from people with Alzheimer’s disease demonstrated that the illness “was not simply a matter of going senile, for the disease struck victims in their prime, people who, whatever their age, were active and involved in life. These images [demonstrated that Alzheimer’s disease is] a major killer that required the same level of public awareness and commitment as other dread diseases” (pp. 117). By promoting this widespread understanding, people with Alzheimer’s disease helped make the condition a funding priority for the American government, thereby increasing medical research and support for people with the condition and their caregivers.
With this increase in research, it became clear that women are more likely to develop Alzheimer’s disease than men (pp. 112-113). According to the Alzheimer’s Association’s 2014 report, 1 out of 6 women over the age of 65 are at risk of developing Alzheimer’s disease compared to 1 out of 11 men. Of more than 5 million Americans living with Alzheimer’s disease, 3.2 million are women. Moreover, 60% of all Alzheimer’s caregivers are also women (Alzheimer’s Association 2014). These statistics are appalling. While nearly two-thirds of Americans with Alzheimer’s disease are women, about two-thirds of caregivers for people with the disease are also women. Alzheimer’s disease places a disproportionately larger burden on women.
This then begs the question: Where are all the men? While research is still being conducted to understand the biological differences that place women at a higher risk for Alzheimer’s disease than men, I am curious about the disparity in caregivers. If more women are affected by Alzheimer’s disease (and assuming there are more heterosexual than homosexual couples in the United States), is it at all reasonable to think there might be more male caregivers for people with Alzheimer’s disease? What role do husbands play for their wives who develop Alzheimer’s disease?
The statistics also match the availability of stories and blogs from caregivers. Many blogs about the experiences of caring for people with Alzheimer’s disease come from women. The blog Missing Jim is written by a woman whose husband had early-onset Alzheimer’s disease. The blog Dementia Be Damned comes from a woman who, along with her mother, takes care of her sister Lyn who has an intellectual disability and Alzheimer’s disease. There are few stories from male caregivers – but, perhaps, this might just match the statistics. If this is the case, why do men not readily assume a caregiving role and what can we do to change this?
While Ballenger does not talk about the gendered differences among caregivers in his article, he does mention that societal norms tend to value men in the workplace and women in the domestic sphere (pp. 112). While this is changing today, gender norms may still help explain some of this disparity. When a woman develops Alzheimer’s disease, other female family members or health aides may assume the role of caregiver before men do. This is illustrated in the 2014 movie Still Alice. When Alice’s Alzheimer’s disease progresses to a point where she can no longer live on her own, Alice’s daughter becomes her primary caregiver while her husband continues his job.
As people age and more women are diagnosed with Alzheimer’s disease, we will need more male caregivers than ever before. It is important to challenge and change our norms about caregivers to be able to meet this increasing need. While this will be a difficult task to achieve, I believe we can find some inspiration and guidance in Professor Arthur Kleinman’s work. A professor of anthropology and psychiatry, Arthur Kleinman is leading the way for male caregivers by writing about his own experiences providing care for his wife who had Alzheimer’s disease. Kleinman serves as an example that can inspire other male caregivers to share their stories, too. Just as storytelling helped change society's understanding of Alzheimer’s disease in the 1970s, so too can stories help change the discourse on caregiving to increase care for those who need it most.
Bibliography:
Alzheimer’s Association. (2014). Women in their 60s twice as likely to develop Alzheimer’s disease over the rest of their lives as they are breast cancer. Retrieved from https://www.alz.org/news/2014/women-in-their-60s-twice-as-likely-to-develop-alzh.
Ballenger, J. F. (2012). “Disappearing in Plain Sight: Public Roles of People with Dementia in the Meaning and Politics of Alzheimer’s Disease.” In S. L. Jacyna and S. T. Casper (Eds), The Neurological Patient in History (pp. 109-128). University Rochester Press.
Kleinman, A. (2013). From Illness as Culture to Caregiving as Moral Experience. The New England Journal of Medicine, 368(15), 1376-1377.
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Alzheimer’s Association. (2014). Women in their 60s twice as likely to develop Alzheimer’s disease over the rest of their lives as they are breast cancer. Retrieved from https://www.alz.org/news/2014/women-in-their-60s-twice-as-likely-to-develop-alzh.
Ballenger, J. F. (2012). “Disappearing in Plain Sight: Public Roles of People with Dementia in the Meaning and Politics of Alzheimer’s Disease.” In S. L. Jacyna and S. T. Casper (Eds), The Neurological Patient in History (pp. 109-128). University Rochester Press.
Kleinman, A. (2013). From Illness as Culture to Caregiving as Moral Experience. The New England Journal of Medicine, 368(15), 1376-1377.
Click here to return back to the History of Science 170 Blog home page
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