Challenges Facing Elder Rights in the US (January)

For our first month, January 2019, the Rights Writers introduce their topics and give an overview of the main actors and debates.

Navigating a retirement home is confusing. The hallways are long and crooked, bending in odd directions like fingers twisted by rheumatism. After my first visit to Croasdaile Village to visit a hospice patient, I learned that retirement homes’ nonintuitive design is intentional. Closed doors visible down straight halls would too clearly signal dependency, a denial of freedom, a negative punishment that emphasizes residents’ trapped mental, physical, and emotional state. In a clever psychological trick, winding hallways and passcode-protected exits offer residents a sense of agency that gives them the illusion of entering and exiting spaces as they please.

In reality, a certain part of older people’s agency is signed away when they or their family members approve the stack of legal forms that accompanies major life transitions like entering a nursing home. Wandering those halls in circles with the hospice patient week after week, I began wondering how agency factors into important issues facing older people involving the places they walk, pills they take, and demands they make. Are their opinions valued because they are intelligent humans with vast life experience or derided because their age perhaps suggests declining cognitive capacity? More specifically, I was disturbed by the lack of human rights discourse I found when interrogating a problem uniquely encompassed within my blogpost series topic of end of life care, a problem facing the aging worldwide: elder abuse.

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            Elder abuse can take the form of physical, emotional, or sexual abuse, financial exploitation, neglect, or abandonment. The National Center on Elder Abuse estimates that about two million older people are abused each year in the United States, although data collection is flawed due to lack of consensus on how to define elder abuse, underreporting of abuse, and little public awareness of the issue. Throughout this blog series, I will focus on topics pertaining to elder abuse, exploring the challenges the American aging population faces from a human rights perspective. Elder abuse is preventable, but we must listen to our aging friends and relatives to gauge their concerns, educate ourselves on existing elder abuse research, spread awareness, and make sure we consider how personal and cultural expectations influence older adults’ expectations of care. While often less vocal and visible than younger Americans, older people deserve the same amount of respect and compassion.

Elder rights is a human rights issue. Article 25 of the Universal Declaration of Human Rights adopted by the UN in 1948 resolves that “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including…medical care and necessary social services.” Older people are not explicitly mentioned in the Declaration, so they are often overlooked despite the broad language of the original document. Yet as the population of the United States continues to age, the public must be more vigilant than ever to protect older people’s access to medical care and social services free from abuse. Lack of public awareness of aging-related issues is getting old. It is time to become educated about elder abuse so that we can protect our older neighbors, and eventually ourselves, from mistreatment.

            One of the biggest issues facing elder abuse activists is how to define such abuse. For behavior that qualifies as elder neglect changes depending on the physical, mental, and emotional capacity of the older person in question; as a degenerative disease progresses, the older person loses a capacity for independence and relies upon intensified care. Medical providers of older people may disagree with their patients about deleterious relationships with friends, family, or strangers because the patients cannot view their own declining health with the diagnostic benefits of objectivity and emotional distance. In contrast, cultural differences between older patients and their caretakers may result in older people suffering silently because their cultural expectations of care when aging are not being met. In parts of South and Southeast Asia, spirituality and religion are intertwined into religious life to the extent that many families of patients expect healthcare providers to pray with their charges or provide spiritual counsel when asked. In contrast, American healthcare providers often feel uncomfortable providing any kind of spiritual care, even to religious patients nearing the end of their life and are unequipped to deal with patients of religious backgrounds different from their own. Thus, definitions of elder abuse must be grounded in the lived experiences of older people, incorporating cultural expectations and disease diagnoses into considerations of whether questionable behavior is indeed abusive to older folks.

            The National Council on Aging estimates that as little as one in fourteen elder abuse cases are reported to authorities, and far fewer prosecuted. Almost 60% of perpetrators are family members. Researchers disagree on the most common types of abuse, which are likely co-dependent on the environment and socioeconomic status of the older person. While it may seem common sensical that elder abuse is injurious to health, its effects are staggering. Any type of abuse triples an older person’s risk of death. Premature deaths and exacerbated health concerns caused by elder abuse wreak a heavy cost upon Medicare and private insurance companies; therefore, elder abuse should be a concern of both public and private healthcare. Elder abuse remains underreported, however, because many medical and nursing curricula decline to cover elder abuse identification and prevention. When the survivors or caretakers of survivors go public with their accusations, the path to financial and legal settlements is often unclear, frustrating overworked caretakers and older patients without access to informed advocates.

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            Novel residential models are beginning to pop up in areas like Seattle and the Netherlands where older residents live in cooperatives side-by-side with college students or preschoolers. These alternative nursing homes hope to curb elder abuse by increasing older people’s social access to younger residents who can monitor their quality of care. Advocates in Washington DC are learning from Denmark’s example of diversified home care to empower older people to continue living in their home through subsidized installation of accommodation appliances in the home and senior centers offering social services during the day. While no easy solutions exist to eradicate elder abuse, offering alternative residential options to limit isolation of elders in nursing homes will empower older people to have more say over their home and medical arrangements.

            Lacking prevention education, how do bystanders stop elder abuse from happening? Interest in elder abuse is necessary in the general public to incite widespread reform. The overwhelming majority of elder abuse happens in private confines of homes and institutions, away from public consciousness. Older people may not ask for help preventing their abuse due to shame surrounding the eventual, natural physical and cognitive decline that accompanies aging. Curricula for doctors and nurses who will likely care for many older people in their careers must include bystander intervention training for elder abuse. Younger members of families should educate themselves about elder abuse and common concerns of the elderly available through the CDC, WHO, and other accredited organizations dealing with aging populations. Most importantly, older people are themselves the best resources for reporting concerns about abusive concerns: their objections should be taken seriously and thoroughly investigated as befitting the human dignity they possess.

Kate Watkins is from Winston-Salem, NC. She is majoring in Biology and History with a concentration in the History of Medicine, Science, and Technology. In addition, she is minoring in Chemistry and writing a thesis based upon vaccine social support research she conducted with Bass Connections in Roatan, Honduras. Her blog posts will focus aging policies in the US and abroad, considering related ethical topics such as elder abuse, the right to die, and patient autonomy.

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