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The Difficulty of Defining Consent in Older Adults with Dementia
With the rapid increase in the average age of the population in Western countries and the increase in prevalence of those living with dementia, the challenge of recognizing and attending to the sexual inclinations, needs, desires, and undertakings of those living with dementia has become a topic of particular interest to those caring for this burgeoning population. These challenges are of particular relevance to adults residing in long-term care facilities, in which the number of residents with dementia often comprise a substantial percentage of the population. The author discusses the ethical issues surrounding the question of whether individuals with dementia are able to provide consent and how long-term care providers can best protect their residents while respecting their autonomy.
Key words: sexuality, older adults, ethics, autonomy, dementia
As the older adult population increases in Western countries, there is an associated increased prevalence of those living with a dementia, and, in the United States, many of these adults require and receive care in long-term care facilities. For those professionals and administrators responsible for their care, the challenges of balancing a wide range of needs and clinical and social scenarios are great. Among the situations that are often vexing to both health care professionals and the families of nursing home residents is that of intimacy and sexual engagement. Anyone involved in the long-term care setting is aware of the complexity and variability of the sexually related issues that arise. Sometimes a situation appears so dramatic or out of the ordinary that it becomes a high-profile media event, which often serves to highlight the many important concerns involved, beyond the specifics of the case that brought the subject to media attention.
A Popularized Case
An article in The New York Times reported the case of an Iowa woman, living in a nursing home with severe dementia, and her husband, who ostensibly had intimate sexual relations with her after the staff had told him their opinion that she was mentally incapable of agreeing to sex. It was due to concerns from the woman’s two daughters (through her first marriage) that a physician declared her to be “incapable” of giving “consent” for sex. Therefore, at the daughters’ request, the husband, a prominent, former state senator, was charged with rape.1
The media was abuzz with commentary and “talking heads,” with lawyers and ethicists chiming in about the importance of “consent” to sexual intimacy. When the husband was found to be not guilty of the charge, it did not necessarily quiet the commotion and controversy surrounding the case.2 This incident even made it into the Canadian media with a prominent radio broadcast, one of which featured a geriatrician, an elder-care lawyer, and a senior educator/administrator of the Alzheimer Society of Canada. Another show featured an interview with the same geriatrician and therefore did not have the legal perspective from a lawyer but rather the interpretation of the legal perspective from the radio host.3,4
Contributing Factors
The growing population of aging adults in the Western world contributes to an associated increase in the number of older adults living with dementia.5 With an increase in the number of dementia patients, a significant proportion of them are likely to reside in some form of congregate living situation, be it a retirement home or a nursing home as was the situation in the Iowa case. Had the couple in question lived at home, they could have remained sexually intimate with less likelihood of anyone challenging their behavior.
In the nursing home, the situation changed. They no longer had the degree of privacy that would have existed in their own home. They could not avoid the physician, whose role is to “determine” the wife’s degree of competency for sexual intimacy with her husband. If this had happened in the privacy of the couple’s home, perhaps the woman’s daughters from her first marriage would not have been apprised of the relationship between their mother and step-father in a way that could have triggered what, to some, appeared to be an almost catastrophic “protective” response.6
The literature on the subject has evolved over the years. Because of the demographic imperative, more investigators are trying to determine the right combination of protection for the those with dementia while keeping intact their innate personhood so as not to stand in the way of meaningful intimacy and sexual engagement.7 In one 2013 study, it was found that 85% of respondents reported sexual activity in their nursing homes, most indicating that they considered sexual expression of residents as non-normative: “[I]ssues of consent, especially concerning residents with dementia, and residents’ right to privacy were addressed using existing general policies,” but survey results indicated a lack of policies and staff training in relation to sexual expression.8
The conflict that arises is often framed within the construct of medical ethics with a special focus on consent—the natural outcome of the ethical principle of autonomy. The current and common legal approach to consent, which includes the concept of “understand and appreciate” unfortunately does little to address the interests, abilities, and importance of sexual intimacy and engagement in those living with dementia. A 2012 article from the Journal of Medical Ethics notes:
Sexual self-determination is considered a fundamental human right by most of us living in Western societies. While we must abide by laws regarding consent and coercion, in general we expect to be able to engage in sexual behaviour whenever, and with whomever, we choose. For older people with dementia living in residential aged care facilities...the issue becomes more complex. 9
Western culture, with its emphasis on self-determination, fundamental rights, and perspectives of independence, is not conducive to policy or conventions that restrict personal desires such as normal sexual urges. This cultural ideology makes it a challenge when trying to answer the question as to whether those with dementia are able to appreciate when or if they give consent to physical intimacy.
Why These Cases Garner Notoriety
Much of the media attention is derived from how younger people view—if they see it at all—older adults’ sexuality. In the study mentioned in the previous paragraph, authors also noted that “[s]taff often struggle to balance residents’ rights with their duty of care, and negative attitudes towards older people’s sexuality can lead to residents’ sexual expression being overlooked, ignored, or even discouraged.”9 Thus, another aspect of the same Western culture is that younger adults tend to discount the sexuality of older adults, leading to issues of ageism and a large part of the media sensationalism of these cases. Authors from another study, based on their similar findings, phrased these ideas in an alternative manner, noting that “[a]ttitudes and beliefs toward sexuality and aging are strongly influenced by stereotypes and myths, not only among the general public but also among those working in health and social care.”10 Such information highlights the personal opinions at play even when professionals try to approach the issue objectively. As is often the case, the idea and term “autonomy” is frequently used by professional staff to determine whether or not a person with dementia is “capable” in the cognitive sense of participating in sexual intimacy rather than trying to fathom whether the person is emotionally, physically, or socially predisposed to participate in something deemed to be important to their cohesiveness as a human being.11
Beyond the primarily academic domain, there is a “growing number of advocates for the elderly and cognitively impaired [who] argue that the only humane approach is to have guidelines that do allow for intimate and sexual relationships involving members of these populations, at least in certain cases.”6 Tia Powell, MD, who directs the Montefiore Einstein Center for Bioethics at the Albert Einstein College of Medicine, says, “[T]here’s nothing about being cognitively impaired that means that you wouldn’t necessarily appreciate being connected with other people through both nonsexual means and sexual means.” This is an opinion that is “gaining traction, even among larger organizations like the UK’s Alzheimer’s Society and the US-based Alzheimer’s Association.”6
Varying Perspectives
The Iowa charges and surrounding discussion wound around the idea of consent. Those who condemned the husband’s behavior conflated the idea of decision-making for a medical treatment with the current societal concern about non-consensual sexual intimacy, which is in the non-medical context. They used consent to determine whether a person could engage in sexual intimacy, especially with a known person, without being able to enunciate the standard of a medical decision which is “to understand and appreciate” the consequences of the treatment. There has been a robust questioning of whether the autonomy construct is necessarily the only standard one can adhere to, and there is a competing position which focuses more on the person’s life experiences as a measure of their wishes than on a legal construct that may not be relevant to that person’s current status in life or cognitive abilities.12 One of the questions in this case and in others is, what was the long-standing, intimate relationship between the husband and wife? Was there anything to suggest anything other than a healthy marriage, even while she was developing evidence of cognitive impairment or more severe dementia? Did the couple continue to participate in sexual intimacy prior to her admission to the nursing facility?
The family members’ views of the relationship are also important, as evidenced by the protective daughters in the Iowa case. Family members become an influential force in the lives of their loved ones living with dementia and can significantly impact the way adults with dementia experience their disease. In contrast with the daughters from the Iowa case, family members can function as encouragers of their loved one’s desires for intimacy, as in the highly quoted case of US Chief Justice Sandra Day O’Conner and her husband who has dementia and resides in a nursing facility. O’Connor’s husband actually has a new love interest he met in the nursing home, and O’Connor fully supports it because her husband has found comfort in the midst of his disease.13,14 The media reported:
The two patients reportedly spend time together and hold hands, even in the presence of Justice O’Connor…. Family members often aren’t sure how to regard such a liaison. The children of Alzheimer’s patients often find the adjustment difficult…while many spouses actually are heartened to see a husband or wife comforted by a new friend. Although Justice O’Connor hasn’t commented, her son was quoted as saying that the family is happy that Mr. O’Connor seems to have found rays of contentment in the darkness of his disease.13
Strangely enough, it seems that, in issues of sexuality concerning dementia patients, consent is often intrinsically linked to the family members’ consent as much as the adult living with dementia.
Conclusion
The Iowa case is important in many ways. For one, it reflects a serious bias that many, including lawyers and those in health care professions, have towards those living with dementia. Such biases contribute to the already extreme complexity of human relationships, especially in relation to decisions of family allegiance and support.15 For another, the case further demonstrates the need to understand the large role that family plays in these cases, for example, what motivates family members—perhaps suffering from various biases—to take legal steps to interfere with parental behavior, especially when there might be a hidden or perplexing agenda. Finally, and perhaps most importantly, it suggests that capacity is domain specific,16 and we know relatively little—despite myriad studies, books, and articles—about the capacity for humans, with or without dementia, to participate in and enjoy sexual intimacy with people of importance in their lives.
1. Belluck P. Sex, dementia and a husband on trial at age 78. New York Times. April 13, 2015. http://www.nytimes.com/2015/04/14/health/sex-dementia-and-a-husband-henry-rayhons-on-trial-at-age-78.html. Accessed September 25, 2016.
2. Belluck P. Iowa man found not guilty of sexually abusing wife with Alzheimer’s. New York Times. April 22, 2015. http://www.nytimes.com/2015/04/23/health/iowa-man-found-not-guilty-of-sexually-abusing-wife-with-alzheimers.html. Accessed September 25, 2016.
3. Blurred lines: sexual consent for people with dementia. The Current. CBC Radio. April 10, 2015.
4. Zoomer week in review podcast: April 18th & 19th. Zoomer Radio. April 18-19, 2015.
5. A Place for Mom, Inc. Alzheimer’s Statistics. Alzheimers.net Website. http://www.alzheimers.net/resources/alzheimers-statistics/. Accessed September 25, 2016.
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13. Parker-Pope T. Seized by Alzheimer’s, then love. New York Times. November 14, 2007. http://well.blogs.nytimes.com/2007/11/14/seized-by-alzheimers-then-love/. Accessed September 25, 2016.
14. Zernike K. Love in the time of dementia. New York Times. November 18, 2007. http://www.nytimes.com/2007/11/18/weekinreview/18zernike.html. Accessed September 25, 2016.
15. Gordon M. Lessons on Aging from King Lear. Consultant 360. 2015;55(6). http://www.consultant360.com/articles/lessons-aging-king-lear. Accessed September 25, 2016.
16. Fish A, Silberfield M. When the Mind Fails: A Guide to Dealing with Incompetency. Toronto, Canada: University Toronto Press; 1994.
