The Sexual Consent Potential Model

Abstract:

Sexual consent is a contentious subject, especially for people with cognitive impairment. A recent Delphi study explored the determinants of sexual consent in people with dementia to support safe sexual expression. The study resulted in an evolving conceptualization for sexual consent potential. The developing model is focused on the interrelation between resident-centered care and the optimization of the residents’ environment, in combination with grounding principles. Through an actual lived experience, the sexual consent potential model comes to life and shows clinical utility for use in long-term care.

Key Words:

sexual consent potential, dementia, cognitive impairment, long-term care

Sexual expression among older adults who live in institutional settings is inherently complex, stigma-ridden, and a vital discussion for staff at facilities who embrace resident-centered care (Bentrott & Margrett, 2011). There is little debate that humans are social beings, requiring connection and interaction for robust wellness. Yet, when age and frailty enter the equation, the focus switches to impairment, consistent with the biomedical model that governs our understanding of health, ethics, and, in turn, sexual wellness (Grigorovich & Kontos, 2018).

Most systems in which older adults interact are highly restrictive when it comes to sexuality and aging, perhaps most intensely in the nursing home setting. This is partially due to the pervasive myth that aging is accompanied by sexual decline (Goodfellow, 2004), and the common misperception that older adults are asexual. Operating this way, however, runs counter to providing resident-centered care that optimizes resident autonomy at all functional levels and bases the care plan on resident values and preferences.

Complicating the issue of sexual rights is the high proportion of long-term care (LTC) residents with significant cognitive impairment, bringing into question the cognitive capacity to consent to sexual activities. Sexual consent capacity is “the ability to voluntarily make a reasoned decision whether or not to engage in sexual activities” (Syme & Steele, 2016, p. 495), or the ability to make one’s own sexual decisions. Often, a diagnosis of dementia is considered a universal diagnosis of incapacity because there is a pervasive misperception that people with dementia are not autonomous individuals with personal needs and wants; and that they are therefore automatically unable to be considered sexual beings with any autonomy or agency (Lindsay, 2010). This idea has reinforced a restrictive and deficit-based model of consent capacity, as opposed to a more nuanced, domain-based assessment of capacity.

In the United States, sexual consent capacity is determined at the state level, with each state having its own legal definition of sexual consent (American Bar Association & American Psychological Association, 2008; Lyden, 2007). Three criteria are common to most states, namely 1. knowledge of relevant information, including risks and benefits; 2. understanding or rational reasoning that reveals a decision consistent with the individual’s values; and 3. voluntariness (Lyden, 2007).

There is no specific legal standard to determine sexual consent for older adults who are cognitively impaired, and the laws as applied to other populations often permanently restrict individuals with dementia from sexual activity (Boni-Saenz, 2015). Notably, the type of activity governed by consent law is sexual in nature (i.e., intercourse), yet the types of expression that residents wish to engage in represent a broad spectrum of intimate and sexual behaviors.

Sexual Consent: Ethical Frameworks Guiding Practice

The deficit-based, biomedical model of sexual consent capacity has garnered some critique by scholars as well as providers. It is based on the biomedical ethical standard, which has four main principles, namely respect for autonomy, beneficence (i.e., promote good), nonmaleficence (i.e., protect from harm), and justice (Mahieu & Gastmans, 2012). A main critique is that the principles do not offer practical guidelines for healthcare staff and that they garner negative, more restrictive responses (Grigorovich & Kontos, 2018).

For example, nursing staff tend to err on the side of vulnerability and risk for older residents, and without guidance on what constitutes harm in intimate and sexual situations they often choose the most restrictive route and tend to neglect autonomy and beneficence (Hayward et al., 2013; Vandrevala et al., 2017; Villar et al., 2018). In the absence of more holistic, detailed guidelines, many LTC staff and administrators report challenges to finding pathways to uphold autonomy, which appears to them to contradict their obligation to protect residents from risk and harm (Roelofs, Luijkx & Embregts, 2015).

Recent literature has produced more dementia-friendly ethical frameworks, such as the Embodied Ethical Framework by Grigorovich and Kontos (2018). It is grounded in a relationship model and builds upon relationship-centered approaches. The focus on positive support and agency is a promising ethical framework specifically focused on sexuality in individuals with dementia in LTC. Its authors challenge the assumption that people with dementia lose their agency and include people with dementia as active partakers in their own care and engaging their body as the center of selfhood (Grigorovich & Kontos, 2018). This is consistent with a resident-centered approach to expression of sexual and intimate needs.

What is sexual consent in this emerging ethical context, versus that of a biomedically focused model? The ability to support resident-centered sexual and intimate needs is rooted in centering the resident’s personhood and viewing residents as able to engage in life and in care if you connect to them at their level. Missing from current work on sexual consent in LTC is a focus on potential versus deficits, assent versus consent, and sexual potential versus capacity. Given the lack of professional guidelines centered on the resident, the following Delphi study was conducted to explore which determinants of sexual consent are necessary to support safe sexual and intimate expression among older adults in elder care who have dementia.

The Delphi Study on Sexual Consent Determinants

The aim of the study was to develop a preliminary set of determinants of sexual consent that were identified and defined by experts in person-centered LTC and sexuality and dementia (Huitema-Nuijens, 2022). Participants were a select group of international experts, both research and healthcare professionals, from countries such as the United States, Australia, United Kingdom, the Netherlands, and Belgium. They all had either extensive hands-on experience within a healthcare setting for older adults with dementia or were involved in research that was focused on sexual consent in aging people with dementia in LTC (Huitema-Nuijens, 2022).

The goal was to reach consensus among the expert panel members to identify the core determinants of sexual consent in individuals with dementia (Huitema-Nuijens, 2022). According to the Delphi method, multiple steps are used to identify key issues, prioritize them, and develop a concept or framework (Okoli & Pawlowski, 2004). Experts were asked about the determinants of sexual consent in people with dementia, and their responses were categorized and sent back for approval and/or rewording. This continued for four survey rounds, in which changes were made and determinants were eliminated or adjusted (Huitema-Nuijens, 2022). Consensus of determinants was defined as having at least 75% of the panel members in agreement. After four rounds the expert panel members achieved consensus on a dozen determinants of sexual consent for people with dementia (see Table 1, below).

Table 1. Determinants of Sexual Decision-Making Capacity

The determinants have two general foci—one on the individual resident (I) and one related to the social/external environment (E) of the resident (Huitema-Nuijens, 2022). For the resident, expert panel members expect residents with dementia to be alert enough to communicate and to respond to the communication of an intimate partner, be able to exhibit behaviors or other indicators consistent with assent and voluntariness (e.g., enjoyment with other; lack of anxiety, behavioral acting out).

In addition, they require an ability to make a basic decision to be intimate, initiate and stop behavior, and to preferably undertake the activity in an acceptable place and during an acceptable time (Huitema-Nuijens, 2022). These determinants require varying levels of cognitive, emotional, and behavioral ability and depend upon the situation (second part of the model); however, none of these determinants suggest that an individual with dementia would be necessarily incapable of expressing assent to intimate or sexual behaviors and none have deficit language (Huitema-Nuijens, 2022).

The second area of focus in the determinants is the social/external environment. External factors were not the focus of the Delphi study; however, by identifying them, the panel emphasized the importance of having an optimal environment to support safe sexual and intimate expression (Huitema-Nuijens, 2022). The identified social/external determinants are “medication and medical conditions need to be taken into consideration” and “the facility needs to facilitate sexual expression through policy and staff training.”

The medication and medical conditions represent the physical conditions of the resident, which need to be taken into account to gain a holistic view of the resident, in combination with psychological and social conditions. The need for training and policy refers to the majority of LTC facilities that lack sexuality training and sexuality policy for their staff (Cornelison & Doll, 2012; Doll, 2013). Sexuality-focused training and policy promotes a more positive staff attitude and reduction of sexual stigma and bias due to an increase in sexuality knowledge (DiNapoli et al., 2013). Improving staff attitudes and biases will in turn enhance an understanding of resident’s intimate needs (Ehrenfeld, et al., 1999).

Taken together, the resident-based and social/environmental determinants identified by experts represent key aspects of sexual and intimate decision-making. However, it should be noted that the determination of sexual consent is not as easy as satisfying a list of determinants. This is a process, and consent is not static but dependent upon a specific moment in time, a specific relationship, and specific behavior. It should therefore be thought of as a fluid process that requires regular and frequent adjustments as the behavior, context, and lucidity of residents with dementia is subject to continuous change.

This study also is the beginning of a developing model that is a more resident-centered approach and focuses on the potential of the resident and the optimization of the social environment. It must be centered on human rights, strength, and possibilities—which is in direct contrast with the above-mentioned biomedical and legal approach based on deficiencies and restrictions (Huitema-Nuijens, 2022). What follows is a description of an evolving conceptualization and framework for sexual consent potential, as informed by the Delphi study and shifts in the ethical literature on dementia and sexual and intimate expression (Grigorovich & Kontos, 2018; Mahieu & Gastmans, 2012).

Sexual Consent Potential

Sexual consent potential is a term that highlights a shift away from solely assessing for capacity in the legal framework toward a more robust, resident-centered assessment of a resident’s sexual and intimate potential. It is linked to the residents’ strength, possibility, and agency (Huitema-Nuijens, 2022). Further, sexuality is viewed as a normal part of life and a key aspect of wellness from birth through the end of life, illustrated by experiences such as kangarooing (holding a baby close to the chest) which is medically beneficial for a newborn (e.g., higher survival rates) and strong emotional connection to others that has been shown to have a multitude of benefits for adults into later life (e.g., longevity, mental health) (Sánchez-Fuentes, Santos-Iglesias, & Sierra, 2014).

Grounding principles of the sexual consent potential model include that it is resident-centered, meaning it is aimed at a single resident, their current behavior (or set of behaviors), and the current intimate relationship (or solo experience) (Huitema-Nuijens, 2022). It allows for different situational contexts, resident histories, inherent risk in the behavior in question, potential to mitigate risk, and ability to meet the need with less risky sexual or intimate behavior, which is largely absent from a biomedical approach. Therefore, along with the resident, a multidisciplinary team familiar with the resident should be involved in the discussion of identifying sexual consent potential. The team should focus not only on the risks or deficits, but also on the strengths of the resident and their observed or reported (historically or currently) intimate or sexual needs (Huitema-Nuijens, 2022).

Another grounding principle is optimization, as sexual consent potential is aligned with the Selective Optimization and Compensation (SOC) (Baltes & Baltes, 1990) theory. It considers resident-centered needs, along with the strengths and limits of the resident to selectively compensate and optimize conditions to meet the need of the resident in the least restrictive option possible.

To illustrate, in the biomedical approach residents would be considered impaired and incapable of sexual consent, noting the limitations of their inherent ability. In the sexual consent potential model, the focus is on the various possibilities of meeting sexual and/or intimacy needs at any level of cognition rather than focusing exclusively on the decline in cognitive capabilities of a person with dementia. While people with dementia generally experience a decline in executive functioning and memory, several aspects are still intact, such as emotions, automatic motor skills, and being very present in the here and now. People with dementia can and do enjoy the company of a person and feel affectionate toward that person, without being able to explain the past or the future of that relationship (Huitema-Nuijens, 2022). A hallmark of sexual consent potential is that every person is unique and has capabilities that can be met through optimizing conditions and mitigating risk (Lindsay, 2010).

In addition to these grounding principles, the sexual consent potential model incorporates the determinants identified by the expert consensus panel that can either support or suppress a resident’s sexual potential. These are separate, yet highly interrelated constructs (see Figure 1, below).

Figure 1. Sexual Consent Potential Case Illustration

Resident-level Determinants

The first 10 determinants (see Table 1) are considered to be resident-level determinants (Huitema-Nuijens, 2022). Optimizing the resident-level determinants will include an in-depth review of resident capabilities and potential, with a team that is familiar with the resident. To discuss the determinants in relation to a specific resident, it is paramount to define the level of intimacy or what the sexual behavior entails in relation to the specific resident. After agreeing on the definition, the team, along with the resident(s), can go through each of the ten resident-level determinants and provide relevant data/observations to assess the current sexual potential of the resident.

Social Environmental Determinants

The second component of sexual consent potential is assessing the social environment for challenges and opportunities for optimization. Though only a few were identified in the Delphi study, there are many previously identified in the literature as potential challenges to optimizing resident sexual potential. For example, environmental factors include restrictive and/or negative attitudes of staff and family toward the resident expressing sexual and intimate behaviors (Roelofs et al., 2017; Villar et al., 2014).

To reach the sexual potential of residents, facility leaders will need to use strategies such as regular education, attitude assessments, and skill building with staff (e.g., skills to help manage inappropriate sexual behaviors, skills to provide privacy). For family, a facility can formulate other environmental tools like policy development and guidelines that can be given to the family at admission to prepare them for how the facility approaches sexual and intimate expression among residents. The presence of sexuality-focused policies has the potential to promote residents’ sexual expression (Doll, 2013), which will increase quality of life through improvement of social connections and health benefits (Syme, 2014). This is critical work that can optimize sexual potential among residents by addressing family and staff concerns.

The built environment is also critical for optimizing sexual consent potential. Staff and residents cite lack of privacy, room set-up, and overall facility design as potential barriers to intimacy (Bauer et al., 2013). To fully assess and then optimize the social environment, facilities can use the sexuality assessment tool (SexAT) (Bauer, et al., 2014), and the results can inform not only a resident’s care plan but overall facility policy and changes that will make the social environment more conducive to optimizing sexual potential for all residents. However, simple accommodations may help optimize the environment, including workarounds such as signs or privacy symbols on doors that may not be able to be closed, creative scheduling to help rooms be roommate-free, and agreements among staff to ensure private time for a resident.

Services that allow for touch and closeness such as salons and therapeutic massage can provide optimal conditions for touch for residents whose care plan may be to optimize interaction versus isolation. Behavioral redirection and providing private spaces for residents expressing sexual behaviors, such as self-stimulation in public areas can help optimize sexual potential without restricting the behavior outright.

The conceptual model of sexual consent potential is new and developing, though it has clinical utility. It is meant to guide assessment and discussion among staff and the resident (and the resident’s family when appropriate), to inform a resident-centered care plan for sexual and intimate expression.

Practical Application of Sexual Consent Potential

The sexual consent potential of a particular resident will be discussed in relation to the determinants from the Delphi study and the grounding principles of sexual consent potential. What follows is an example of one professional experience shared by the lead author and a resident of a nursing facility (de-identified).

While walking through the hall of the nursing home, I noticed that one of the bedroom doors was wide open and a noise was coming out of the bedroom. It sounded like the person in that room was uncomfortable. Because there were no nurses around, I decided to look inside that room to check on the person. As soon as I stood in the doorframe, the noise stopped. Looking inside the bedroom, I noticed a woman in a fetal position with her eyes closed in a bed, clinging on to the bedrail with both hands. It was clear that she was in the very late stages of dementia. As soon as I walked over to the bed, she tried to unsuccessfully open her eyes. I put my hands on the bed rail next to her hands, and she started to caress my hands. I caressed her hands and talked to her very calmly and quietly. After a while, I decided I needed to move on and go about my regular workday. I said goodbye and walked back to the hallway. The moment I walked through the door back into the hallway, she started making the noise again (Huitema-Nuijens, 2022).

Due to the continuum of sexual expression—from closeness to intimacy to sex—this real-life example illustrates that for every part of the continuum, sexual consent potential can and needs to be identified.

Identifying Sexual Consent Potential

The first step in the process of unlocking the sexual consent potential is assuring the grounding principles are centered in the assessment and team process. Next steps include establishing the intimate act in question for the specific resident(s) and evaluating the social and built environment in which the act(s) took place. In this case the definition of sex or intimacy was touching and caressing hands, touching and caressing lower arms.

Next, the determinants are identified for this resident with severe dementia (see Figure 1). The team’s main discussion was around the communication of this resident, with the conclusion being that the resident communicates through touch and making sounds (sounds mean she is uncomfortable or uninterested and no sounds mean she is either sleeping, interested, or enjoys what is going on). Even though this resident had a fairly limited way of communication, the team decided that her communication was consistent and not random. The two determinants the resident was unable to meet were that she seemed unable to make a decision about whether to be intimate or not. Considering her basic level of cognitive functioning, the team thought it was unlikely for her to make a decision, as she only seemed to react in response to the actions of others. The other determinants the resident was unable to meet were her ability to choose a socially acceptable time and place for sexual behavior, for the sole reason that she is completely bedridden and unable to make such a choice.

Even though not all determinants were answered affirmatively, the team still considered her able to consent or assent in relation to the established definition of the intimate act. The ability of our team to discuss the sexual consent potential was highly dependent upon their familiarity with the resident as well as the capability to view her as an independent person with agency and needs. In addition, teams approaching this work need the fundamental desire to be as objective and non-judgmental as possible.

With a clear definition on the intimate level of the resident, identified opportunities to enhance the social and built environment, and the discussion of the determinants, an action plan was developed to fulfill the intimate needs of this resident. Part of the action plan was: Ask family and friends to come by either alone or with maximal two people to create a more intimate meeting (more focused on resident), space out intimate encounters so she has more, shorter interactive moments, hold her hand when you meet her, make the personal hygiene moments gentle and more intimate for her (e.g. gently use body lotion on lower arms and hands), find soft objects that she likes which she can hold onto, adjust the bed rail to make it softer on the touch, and instruct family and other staff on how to best interact with her.

After constructing the plan, it needs to be discussed on a regular basis and adjusted based on the resident’s behavior and observable needs. The definition, the determinants, and the action plan are all considered to be fluid. The adjustment could potentially entail subtracting, as well as adding or adjusting items, ideas, and thoughts, such as the definition, the personalized determinants, and the action plan. Adjustments are necessary as residents can change, and/or the team could discover additional needs or options due to greater familiarity with the resident, as well as the resident’s response to the action plan.

When comparing the sexual consent potential model to the biomedical model of sexual consent capacity, the latter would infer that due to the enhanced stage of dementia and extremely limited cognitive capacities of the resident, sexual consent would be considered non-existing and therefore no focused action would have been taken. However, with the team discussion that led to the definition of what is considered intimate, the personalized determinants, and the action plan, the resident in the example had a measurably more enjoyable time at the nursing home. The family was grateful that her quality of life seemingly improved, and the staff appreciated a successful and satisfying determination of sexual consent potential.

The sexual consent potential model can improve organizations and teams, but most importantly resident well-being. The three interrelated constructs form the base of the model and are necessary for practical application. Reaching the full potential of the constructs will vary in each facility and with that the improvements necessary to reach full potential. As this model is the first attempt to unravel the complexities of sexual consent potential, it still has to prove its worth in a broader variety of organizations, however beneficial clinical utility seems possible.

Call to Arms

To thrive, we need relationships, we need touch, and we need connection. Individuals who live in nursing home settings and who may have cognitive concerns are no different. The need is there, we just need creative strategies to meet it. If you view expression of intimate needs through a biomedical lens, then it will likely lead you to think about the risks, the deficits, and the impairment of residents and protective strategies. If you view expression of those needs as sexual consent potential, you will think of all of those components and you will search for strategies to optimize the environment and resident strengths, mitigate risk, and construct a care plan that is resident-centered and fluid.

Nathalie Huitema, PhD, is an independent researcher in Boston, MA. She may be contacted at nathalie@drNathalieHuitema.com. Maggie Syme, PhD, MPH, is senior director of the Hebrew Senior Life Marcus Institute for Aging Research also in Boston. She may be contacted at MaggieSyme@hsl.harvard.edu.

Photo credit: Robert Reed/Shutterstock

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