Cast Aside: Why Elder Rights are Women’s Rights

By Mary O’Neill

WLRN's newest member, Mary O'Neill, offers this piece on the state of women's rights in elder care with a specific focus on dementia and Al
Cover Art by Margaret Væk

There were 14 women and 1 man in the memory care ward. All had varying degrees of advanced dementia, though their ages ranged from 70 to 95. At dinner, the residents sat in the dining room, where aides turned the radio station from Andy Williams to modern pop. A staff member placed their meals in front of them, not asking any resident, even those capable if they had a preference. As they ate, the aides sat at a table in the corner, talking only to each other. 

After they ate, an aide led them quietly to a sitting room, where they lingered in front of one television playing the local news, nodding off or staring into space until it was time to call it a night. The remote controller sat atop the television, far out of the reach of the residents sitting motionless in their chairs. 

This scene plays out every day in nursing homes and memory care wards across the country. There is little to engage the residents, most of whom are women, and too often, little care. Changing the radio from a station that plays music the residents know and can sing along to, to one that plays the latest hits is a small representation of how invisible and insignificant these residents are rendered when they can no longer stand up for themselves and make themselves heard. 

Women make up the majority of the over-80 population and make up nearly ⅔ of people living with Alzheimer’s, a progressive neurodegenerative disease. However, contrary to popular belief, the higher incident rate of Alzheimer’s disease in women is not wholly attributed to women’s longer life expectancies. Rather, it is because the two biggest risk factors of Alzheimer’s are age and sex.

For this reason, elder rights is very often a women’s rights issue. And Alzheimer’s is very often a sex-based disease.

Mitochondrial dysfunction is a recognized trait of Alzheimer’s, with the amyloid-beta peptide being a known cause (in the brains of mice with cognitive impairment, mitochondrial amyloid-beta levels are associated with mitochondrial dysfunction).  Another large cohort study demonstrated that women who are positive for the ε4 allele of the apolipoprotein E gene are more likely to develop advanced dementia compared to men who are also positive.

Anyone who has ever known someone with Alzheimer’s recognizes how vulnerable patients are, especially as the disease progresses. At advanced stages, residents (again, mostly women), may be confined to their beds and require even more care as they are unable to perform daily hygienic functions. 

Covid-19 laid bare the neglect so common in nursing homes around the country. Even now, newspaper headlines hint at how states and nursing homes failed to take action before the virus spread through the residents, causing unnecessary deaths. Laura Mills, an elder rights researcher with the Human Rights Watch, said ‘Even before the pandemic, the US government failed to ensure that nursing homes were adequately staffed and regulated.’ 

In the United States, years after the pandemic exposed the litany of systemic failures in nursing homes, there is still general inaction when it comes to preserving the dignity of nursing home residents, who, as mentioned before, are mostly women. They continue to sit in nursing homes and memory wards, forgotten as the world marches on.

It is no surprise that elderly women are categorically ignored and dismissed. In a society that prioritizes youth and beauty in women, those who do not tick the boxes are invisible. And who is more invisible than an elderly woman with dementia?

As studies of Alzheimer’s demonstrate, biological sex is a significant factor in developing advanced dementia. And women, whether they be young or old, have always been treated as lesser than their male counterparts. Women’s health has never received the same priority and investment as men’s health. Even conditions and diseases shared by both sexes are better known by the symptoms primarily experienced by men; the symptoms experienced by women are barely discussed.

For example, everyone knows that chest pain is common during heart attacks. But for women experiencing heart attacks, it is not uncommon to also have pain in the jaw and back, nausea, and shortness of breath. 

It bears repeating: sex matters in healthcare, because it matters in disease risk and progression, symptom type,and prognosis.To deny biological sex is to deny thorough and well-rounded research from taking place. 

As women age, they are likely to experience increased interactions with the healthcare system. If they suffer from Alzheimer’s or other forms of advanced dementia, they will find themselves at the whim of those caring for them. While many caregivers see to their tasks with respect and diligence, they are often overworked and overspent. Understaffing ensures that each resident does not receive the time she deserves, leaving her sitting alone or set in front of a television. 

Our mothers and grandmothers deserve better than this. They deserve the highest standard of care, which includes proper nutrition and engagement. And they also deserve to know that the diseases they are more susceptible to are investigated and that funding is available for their treatment. 

Last year, the US Congress increased Alzheimer’s funding by $289 million. This promising investment is intended to enhance care and treatment. However, funding must also come up with tangible improvements to the quality of care seen across the country’s nursing homes and memory care wards. Activities, nutrition, and privacy go a long way in advancing a resident’s well-being, and should thus be prioritized in any setting interacting with elderly women. Ensuring that they are afforded the same respect and dignity they were too frequently denied in their lives should be of the utmost importance. 

Memory care does not have to look like elderly women sitting quietly in a dining room or slumped over in front of a television. It should look like engaging conversation, frequent activities, and a recognition that their lives and experiences are still significant. Music that they are familiar with should play, and films they saw as young adults should be on the screen. Meals should consist of nutritious food, and, whenever possible and without causing agitation, residents should be asked if they have a preference. 

References

Dragicevic, N., Mamcarz, M., Zhu, Y., Buzzeo, R., Tan, J., Arendash, G., and Bradshaw, P. 2010. Mitochondrial amyloid-beta levels are associated with the extent of mitochondrial dysfunction in different brain regions and the degree of cognitive impairment in Alzheimer’s transgenic mice. Journal of Alzheimer’s Disease. 

Mills, L. and Saha, S. 2021, March 25. US: Concerns of Neglect in Nursing Homes, Pandemic Exposes Need for Improvements in Staffing, Oversight, Accountability. Humans Rights Watch. 

McGarry, B. Gandhi, A., and Barnett, M. 2023, March 23. Covid-19 Surveillance Testing and Resident Outcomes in Nursing Homes. The New England Journal of Medicine. 

Mazure, C. and Swendsen, J. 2016. Sex differences in Alzheimer’s disease and other dementias. The Lancet, Neurology. 15(5). 451-452. 

Viña, J. and Lloret, A. 2010. Why women have more Alzheimer’s disease than men: gender and mitochondrial toxicity of amyloid-beta peptide. Journal of Alzheimer’s Disease. 
Zarkhin, F. 2023, February  22. ‘A catastrophic outbreak’: How Orgeon failed to slow coronavirus before death overtook nursing homes. The Oregonian.


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