Relational autonomy in action: Rethinking dementia and sexuality in care facilities

Introduction

Residents with dementia in long-term care facilities ⁱ are in an acute state of dependency; ¹ nurses and professional staff confine their options in everyday living by making various choices (un)available, (un)acceptable, or stigmatized. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. These vulnerabilities are amplified when sex acts are interactional; institutional policies have to be sensitive to how one resident’s behavior can impact the safety and well-being of other residents and staff. Sexual agency is more than the capacity to choose, engage in, or refuse sex acts; it involves a social dimension in which others recognize and respect one’s sexual identity. When a person resides in a long-term care facility, the individual may view themselves as a sexual being, but their agency, in this facet of their life, is directly affected by caregivers’ perceptions and attitudes, along with facility policies. Research shows that the onset of dementia does not end sexual desire. ^{2 –6} Given the import that sexual activity has for many individuals’ sense of self, desire satisfaction, and interpersonal connections, the presence or absence of accommodation on this front can significantly affect residents’ quality of life.

This issue is further complicated because dementia can result in diminished decisional capacity. ⁱⁱ Scholars and caregivers have started the important work of articulating the sexual interests of those with cognitive disabilities, including dementia. ^{7 –14} Furthermore, recent research has clarified that those with dementia have sexual interests, which used to be a point of contention. ^{3 –6,15} However, there has been little attention paid to how to evaluate decision-making capacity regarding sexual activity by those with dementia. There is evidence that resident’s sexual interests are downplayed or ignored because of ageism on the part of staff, involvement of the resident’s family members, or fear of legal repercussions. ^{5 –18} Put succinctly, researchers have found that

staff apprehensions about the abrogation of their duty of care and concerns about unlawful activity, anxiety about potential risks to the resident, and fear of negative repercussions from a resident’s family make many facility managers wary of physically intimate activity among residents. ¹⁶

This article will focus on individuals with early to moderate dementia in states of daily dependency on professional caregivers. Dementia, as a diagnostic category, describes a cluster of symptoms that leads to loss of brain function over time. Most cases of dementia result from Alzheimer’s disease, for which there is no known cure. In rare cases, dementia can be reversed. When dementia is progressive, memory, orientation to time and relationships, problem-solving, independent functioning, recreational and intellectual interests, and personal care will gradually deteriorate. ²⁰ Moye et al. ²¹ used multiple instruments to compare the decision-making capacity of older adults with and without early to moderate dementia, and they found that most of the adults with dementia scored within normal ranges. It would therefore be a mistake to judge the capacity of all residents with dementia the same; distinctions and individual assessments are crucial. While some researchers have offered insight into how to assess residents’ ability to participate in sexual activity, there needs to be more work on clarifying the risks and benefits of this kind of activity and the picture of autonomy underlying such accounts. ^16,22

First, we discuss some complexities in determining whether someone with dementia has sufficient capacity for sexual decision-making, highlighting the role caregivers have in determining and weighing harms, along with how these perceived harms can directly influence where caregivers set the threshold for having sufficient capacity to consent to sexual activity. We then consider how sexual autonomy pertains to well-being, maintaining that someone with dementia can care about their sexuality and have it form a personally valued aspect of their identity. While it is established that sexuality is an important facet of life, the existing literature does not adequately connect this to a resident’s identity or conception of self explicitly. ^{3 –6,18} With this conceptual framework, we compare the independence account and relational accounts of autonomy within the context of sexual agency. From a relational perspective, caregivers’ ⁱⁱⁱ obligations are positive as well as negative, and policies should provide mechanisms for different forms of sexual expression. This article ends by suggesting some relevant moral considerations that should guide institutional practice while attending to concerns of vulnerability of both caregivers and residents.

Capacity modeling for sexual decision-making

When an agent’s capacity is in question, there is a greater degree to which institutional mechanisms will dictate when, how, and with whom the resident may engage as a sexual agent. What harms or risks should be protected against, and which should be tolerated? How do caregivers determine what counts as significant harm in these situations, given the intricate ways in which sexuality is tied to well-being and identity? In clinical contexts, capacity evaluations tend to be triggered when patients refuse significantly beneficial, recommended treatment. Based on common standards in clinical practice, the components of capacity include stable communication of choice, understanding relevant information about the proposed option and viable alternatives, demonstration of clear reasoning and justification, appreciation of the relevant risks and benefits of each alternative, and the ability to grasp the specific implications of the decision for one’s life. ^23,iv

Each of these components exists along a spectrum; to what extent someone needs to display, for example, reasoning will depend on particularities of the case. While many assessment tools allow room for caregivers to report nonverbal communication between residents, such as handholding, displays of affection, and happiness together, this can be discounted if the patient cannot explicitly verbalize specific answers to questions during an assessment interview. ²² Caregivers ought to attend to the different ways that communication of choice could be evidenced by residents with dementia. In the absence of explicit verbalization, their interests could be inferred through patterns of behavior and dispositions. For instance, the Hebrew Home in New York has a policy with suggested ways to indirectly measure consent as it relates to sexual activity. ^6,24 Even if sexual preferences are too vague to infer, caregivers could at least discern whether the resident’s agency and well-being interests would potentially be served by giving them outlets for their sexual agency.

Based on the sliding scale model of capacity evaluation for healthcare decisions, the risks and benefits of the specific proposed course of action determine the threshold for capacity. If a proposed treatment plan will subject a patient to extreme risk and questionable benefit, given the viable alternatives, then the patient needs to show a high level of capacity to consent. If, however, the proposed therapy carries minimal risk and substantial benefit in comparison to alternatives, then the capacity threshold is minimal for consent. Where the threshold lies depends on how the decision will further or set-back the individual’s well-being. ²⁵ This model is consistent with the recommendations of scholars such as Tenenbaum ¹⁵ and Kuhn ⁶ who advocate the avoidance of blanket judgments on whether residents with dementia can engage in sexual decision-making.

When considering the kinds of risks and potential harms related to sexual activity, one needs to consider what it means for individuals to engage in specific kinds of activity and also what it means to deny a person’s sexual autonomy over an extended period of time. For example, Tarzia et al. ¹⁶ explain that

a resident with dementia may not be able to “render informed consent to an operation that has a significant risk of death but may be able to decide on what flavour of ice cream he would like for dessert.” In most cases, […] decisions about whether or not to engage in sexual behaviour are closer to those about ice cream than surgery.

Consenting to sexual activity is not only about physical risk but also about intimacy, identity, and vulnerability, and all of these are bound up with who the sexual partner is (when there is a partner involved), ^v the kind of access one might have to sexual aids and devices, and how others control available options. Repeatedly denying a person ice cream would not diminish her well-being and sense of self in the same way that denying a person sexual expression would. Harms should not be merely viewed at a distinct time slice, since the need to express oneself sexually at time t₁ will not probably ever be urgent—but there is significant long-term damage if that decision is not generally respected. Consequently, policies that block access to sexual expression result in compounded harm over time, making sexual autonomy increasingly morally urgent the longer opportunities for expression are denied. In short, weighing the risks associated with overriding someone’s sexual preferences should take into account the net harms and benefits of systematically empowering or excluding persons from this type of decision.

While reasonable precautions would include rigorous tests for capacity when cognitive impairment is present, the standards should not be over-idealized so that hardly anyone would pass the test. For example, the Texan Senior Psychiatric Connection has an assessment for determining capacity for sexual decision-making that tests whether the resident can verbalize sexual values and decisions, has self-knowledge of comfort levels with different stages of intimacy, has adequate knowledge of risks, and has coherent and consistent beliefs about sex. ²⁶ Depending on how these elements are interpreted, this instrument has excessively high standards for demonstrating sufficient decisional capacity; many adults without cognitive impairments could easily fail on one if not all of these assessments, and their choices are nonetheless protected. Instead, capacity instruments should identify reasonable standards for the different components of capacity. For example, the instrument offered by Lichtenberg and Strzepek ²² has interview questions to assess whether a resident lacks critical understanding such that they do not understand with whom they are having intercourse (e.g. they believe another resident to be their long-deceased spouse). If they did understand that their sexual partner is not their deceased spouse, they might not consent to the sexual activity. Residents with dementia in facilities are vulnerable to coercion and sexual assault, which they may or may not be able to process as such, depending on any confusion they have about the act. This is why careful capacity assessments for sexual activity specifically are needed.

Given these considerations, caregivers need to know how to identify and weigh potential harms. The risks of certain types of sexual activity (e.g. casual intercourse or non-heterosexual public affection) could be over-inflated based on personal bias, concerns about social repercussions among the other residents, or ignorance about disease transmission. Dementia can cause disinhibition, which sometimes leads to public sexual acts or the emergence of previously suppressed sexual preferences. ⁸ However, as Higgins et al. ¹⁷ explain, there is disagreement over what constitutes disinhibition or hyper-sexuality. A new sexual lifestyle or set of preferences does not necessarily mean that the resident has diminished capacity, though it might provide evidence for initial questioning.

Disinhibition can lead to inappropriate displays of sex expression, such as unwelcome sexual advances toward other residents or staff, which can cause significant distress. ^{4 –6} Capacity determinations are focused on what faculties the individual has for the decision at hand; questions about whether someone has capacity are separate from whether a resident should be permitted to pursue the decisions they have the capacity to make. After the capacity evaluation, a deeper investigation is warranted regarding whether the sexual lifestyle threatens the well-being of a resident, other residents they might come into contact with, or caregivers.

Sexuality and well-being in the twilight of identity

Determining capacity for these sorts of decisions demands clarity on how sexuality factors into autonomous agency and well-being for individuals who are in the twilight of their identity—that is, for individuals whose sense of self has begun to fade in some respects due to dementia. A common concern arises when sexual behavior does not cohere with the individual’s long-standing values or preferences prior to the onset of dementia, which could damage preexisting relationships with loved ones. If the resident experiences episodic lucidity, or if the dementia is reversible to some extent, then the resident could also suffer from distress and feelings of inauthenticity. ¹⁵

Caregivers have to balance risk of harm with a resident’s autonomy interests. Nonetheless, as Tarzia et al. explain, “[i]n theory, [care facilities] are bound to uphold residents’ rights to privacy and autonomy; however, in practice, this commitment is abandoned as soon as a risk is perceived or if there is opposition from family members.” ¹⁶ Because of the power caregivers and family have to determine what counts as risk or harm, they occupy a gatekeeper role that monitors the ability for residents to engage in many types of sexual relationships. Unless the resident’s sexual preferences endanger their well-being or the well-being of others based on an unbiased and careful assessment, and unless these behaviors cannot be easily managed by the care team, contacting family members or restraining the resident will carry heavy moral costs.

Concerns about vulnerability are of paramount importance, and sexual autonomy, ^27,28 a necessary condition for sexual agency, is but one aspect of well-being.^vi Individuals vary in the extent to which they value different aspects of well-being, and someone can rationally trade-off one aspect for another. For instance, someone facing the onset of dementia might choose to enter a residential facility where they will have fewer opportunities for autonomous functioning; the individual could make this choice as part of a rational deliberation process wherein they believe that this living arrangement will ultimately help secure other important aspects of well-being, such as safety and a social network. However, it is crucial that policies and institutional structures do not systematically force individuals to make unnecessary trade-offs to their well-being or force them below a minimum threshold on any particular aspect of well-being. ²⁹ In other words, while it can be rational for a given individual to choose not to express their sexual autonomy, it is unjust for that individual to be denied adequate conditions for sexual autonomy.

Concerns about well-being and autonomy are linked to questions regarding identity. Someone’s sense of self can be threatened as a result of being alienated from embodied desires. In the midst of radical changes to mentation and environment, someone with dementia in a care facility could come to value bodily interactions even more keenly; sexual expression could become more important for these individuals. Catriona Mackenzie argues that our narrative identity—the self-told story that highlights our interpretative stance toward the most meaningful aspects of our lives—relies on a bodily perspective. Mackenzie points out that bodily perspective “is responsive to one’s relationships with other people, one’s social situation, and social and cultural representations and practices, including those related to gender, ethnicity, sexuality and disability.” ³⁰ Given the vulnerability that residents with dementia already have in the fading of their narrative self-conception, there are moral gains to be had in providing opportunities for them to continue their bodily perspective.

A critic could object that sexual identity will not factor into well-being considerations for this population in virtue of their inability to value much of anything. If dementia results in a diminished ability for reflective endorsement of sexual desires, then these desires cannot truly “speak for” who the individual is. Thus, the critic would conclude, the moral costs of denying this aspect of well-being are ultimately trivial. However, this is an overly narrow view of what can “speak for” someone. Agnieszka Jaworska argues that caring attitudes can function to cohere someone’s sense of self over time, even through changes brought on by a condition like Alzheimer’s. Dementia does not necessarily destroy someone’s ability to care about certain activities. ³¹ The emotional investment involved in caring has the effect of structuring and directing a person’s intentions and end-setting, which are instrumental in forming an individual’s sense of self. ³¹ When someone cares about their sexuality in this sense, then its expression will matter for their self-conception, which in turn has ramifications for their sense of their own flourishing.

Independence account and relational account of sexual autonomy

Within long-term care facilities, paternalistic restrictions on sexual expression—through, for example, exclusionary educational programs or interferences by caregivers—can be supported and rationalized by the independence account of sexual autonomy. This account revolves around the paradigm of a competent adult whose sexual desires are free of external influences. This account reflects a negative conception of autonomy that entails obligations of non-interference. Based on this conception, an agent should need only their reasoning to set and attain their ends; if someone cannot achieve their ends on their own, then there is reason to suspect that they are not sufficiently autonomous. The independence account poses significant problems in the context of care facilities. George Agich notes that for residents who need long-term care, their

frailties suggest that the ideal of the person that underlies the standard view of autonomy is inapplicable in many of these cases or simply fails to provide much practical assistance for either restoring or sustaining the degree and kind of autonomy that is present. ³²

As Sherwin ²⁷ explains, a theory of relational autonomy holds that all persons are interdependent; our sense of self and our end-setting largely rely on our social supports. As a person’s capacities are dependent upon their support network and social institutions, so too are different aspects of a person’s identity largely constituted by how they interact with others and how they perceive themselves in relation to others. From a relational standpoint, the relationship between a resident and caregiver is not categorically different from other relationships persons might have throughout their lives. Within a care facility, caregivers are uniquely placed to engage empathically with residents and thereby promote their autonomy and welfare interests. For example, caregivers might observe whether two residents seem to enjoy each other’s company, display affection, and can empower those residents to have a shared room or privacy accommodation. This is relational insofar as the residents are, indeed, dependent upon the caregiver to enact their sexual agency. Conversely, caregivers can obstruct sexual behaviors and activities. If we ignore the difference in power relations between the resident and the caregiver, though, along with the way decisions are made within long-term care facilities, we paper over the ways in which residents’ autonomy can be diminished, even as these facilities seek to enable autonomy. ³³

Residential facilities determine the power of caregivers to act as gatekeepers for access to privileges, such as extended or private visitation from a partner. Based on the long-standing practices and training available at these facilities, caregivers can find it more or less difficult to accommodate residents’ sexual needs. Silence on these issues in policies or from managers is common and can result in discomfort and uncertainty, as well as unreflective responses of “rejection, disgust and anger.” ⁷ As explained by Mendes, “[there is a perception that] sexuality is generally not considered a priority for older people and that it’s rarely covered in training.” ⁵ For instance, caregivers might not know when it is appropriate to contact family members about a resident’s sexual behavior, and they might not know how to navigate the tension between privacy and protection.

Moreover, institutional policies and caregiver judgments are subject to cultural norms about appropriate gendered sexual behavior, biases related to resident partner selection or preferred sexual lifestyle, and the presumed stability of a resident’s preferences (i.e. whether changing desires are viewed as problematic). For example, research shows that managers in residential facilities are more inclined to police women’s sexuality and take a protective stance toward them. Men’s sexuality is frequently met with pathologization and various forms of punishment or confinement. ^8,14 Non-heterosexual residents are often made invisible in policy and practice, and “by overlooking the possibility of differing sexualities, care homes generate and support conditions of ‘compulsory heterosexuality’.” ¹⁴ In addition to heteronormative biases, caregivers and policies might suffer from ageist or ableist assumptions that affect caregiving practice. ^5,6,17,18,34 Measuring caregivers’ attitudes on this topic is necessary to uphold person-centered care and to respect the autonomy interests of residents with diverse sexual interests; one approach to this is adopting Daniel Kuhn’s Staff Attitudes about Intimacy & Dementia (SAID) Survey or a similar tool. ⁶ It is imperative to form policies that take into account biases (including implicit) of caregivers and administrators that might affect quality of care and gatekeeping practices.

Recommendations

In order to support non-harmful sexual activity, facilities should construct a number of guidelines. One crucial requirement is that caregivers should be confident that all parties to the sexual interaction have the capacity to refuse (not merely consent), and they have the physical ability and opportunity to decline at any point, which may mean that many residents with dementia will not qualify. Caregivers will need guidance and support in identifying sex acts that physically, emotionally, or socially harm the resident or others. When power and vulnerability asymmetries are present (e.g. when one party has cognitive impairment and the other does not), caregivers should take additional steps to ensure that refusals are actually possible and taken seriously. These moral considerations are not exhaustive, but they highlight the sorts of concerns that should shape institutional policies/procedures. In this final section, we discuss some of the relevant moral considerations for practical action in institutional contexts, keeping in mind that caregivers in residential facilities tend to be underpaid, overburdened, and underappreciated as it is.

Concluding thoughts

We have argued that capacity determinations need to take into account how the denial of sexuality among residents can cause deep, long-ranging harms. We have covered central obstacles to enabling the sexuality of residents with dementia, including (1) capacity evaluations not being responsive to the long-term harms that accompany continual denial of sexual agency, (2) lack of recognition of how sexual agency features into identity, and (3) the imposition of inappropriate standards and expectations for sexual autonomy. Future research needs to continue this line of inquiry to clarify how supportive caregivers should be in furthering the sexual interests of residents, how to modify existing assessment instruments to better weigh nonverbal communication of preferences to allow for more thorough capacity assessments, and how to best support historically marginalized communities, such as LGBTQ* residents, when developing policies to empower residents’ sexual autonomy.