5 Navigating Intimacy: Evolving Perspectives on Consent and Connection in the Lives of Older Adults with Dementia

Dr. Nathalie Huitema

             To understand sexual consent in relation to older adults with cognitive impairment, social workers and other healthcare professionals must be aware of their own personal biases, as well as the various sexual consent frameworks that inform social work practice. As the two most common frameworks of sexual consent, the legal framework and the biomedical framework, are focused on cognitive deficits, they tend to exclude people with cognitive impairment. Therefore, I will introduce a newly developed sexual consent model, which is person centered and focused on cognitive potential in this chapter. As discussed here, the sexual consent potential model provides practical guidelines that will prove helpful in real-life situations often encountered by social workers. Additionally, I offer a diverse set of examples to help you build some experience with the discussed guidelines, which can be used in your future professional work.

Bias towards Sexuality and Older Adults

             Historically, sexuality has been paradoxically related to older adults. The idea that aging comes with a lack of sexual desire has existed since the ancient Greek era. Later, during the Middle Ages, the influential Catholic church considered sexual behavior to be a sin, as it believed sexuality was meant for reproductive reasons only. Therefore, the dominant belief that sexuality is for the young and the fertile is so embedded in Western society that it is still present today in myths and stereotypes. For instance, the most common sexual myth is that older adults are asexual, signifying a general belief that older adults are not sexual (Bauer et al., 2014). Societal myths and stereotypes influence attitudes and behaviors on an individual level, such as through family members, and healthcare professionals are as individually impacted as others. Consequently, healthcare staff may likely have incorporated negative societal ideas about sexuality and older adults into their belief systems. Negative societal attitudes exponentially influence older adults who reside within care homes, where any sexual expression demonstrated by older adults is perceived as morally inappropriate or behaviorally problematic (Archibald, 2002; Doll, 2013). These views could be considered to be ageist, as “Ageism is the stereotyping of and discrimination against individuals or groups because of their age” (Doll, 2012, p. 19).  Ageism can potentially restrict residents’ sexual expressions and with that create unnecessary barriers for older adults (Chen et al., 2017; Hajjar & Kamel, 2003; Mahieu et al., 2011; McAuliffe et al., 2007; Roach, 2004).

The terms bias and ageism are used in this context, because older adults, even those with cognitive impairment, are capable of having sexually fulfilling lives. Research shows that libido does not change with age, which became obvious once researchers factorially separated age and illness. Libido and sexual needs may change because of illness, medication use, or partner loss (Lindau et al., 2007), all of which have an increased chance of happening when people age (Lindau et al., 2007). However, it is paramount to understand that age itself does not affect libido or sexual behavior (Lindau et al., 2007).

As a rising healthcare professional, it is important to be aware of your own biases before discussing a subject like sexuality with someone personally or proximally experiencing dementia through a family member. Everyone comes with personal bias. However, awareness of yours is vital when discussing a complicated subject like sexuality in the field, especially since bias also negatively influences the sexual rights of older adults in general.

“Sexual rights are simply human rights as applied to sexuality” (Barrett &  

Hinchliff, 2018, p. 1). 

In Western society, the sexual rights of elders have been neglected and ignored. This neglect is the direct result of a historically negative attitude towards senescence, which is the biological process of aging. Recognizing this connection offers an opportunity for healthcare experts to enact positive change and enhance the quality of life for older adults.

Discussion question: Have you ever noticed bias toward older adults concerning sexuality in your (social/work/school) environment? What did you notice and what did you think/feel about it?

Do your own implicit bias test: If you are interested in learning about personal bias that you may have towards older adult sexuality, you can complete the implicit association test (IAT) from Harvard University.

Constructs Defined

Dementia. Dementia is a general term for cognitive decline caused by physical changes in the brain. The official term for dementia, major neurocognitive disorder, is not commonly used thus I use the common term, ‘dementia’ throughout. In general, dementia is characterized by “significant cognitive decline in one or more domains of cognitive functioning” (DSM-5; American Psychiatric Association, 2013, p. 797), including attention, memory, language, motor skills, and executive functioning. The characteristic cognitive decline of dementia results in impairment as well as dependence for completion of daily activities (American Psychiatric Association, 2000, 2013). The etiology of dementia is very diverse; however, the most frequently reported cause is Alzheimer’s disease (70%), followed by vascular dementia (16%) (Alzheimer Nederland, 2021). If you are interested in other types of dementia, you may refer to the Alzheimer Association (i.e., https://www.alz.org/).

Sexuality. The World Health Organization (WHO), defined “sexuality” as:

[A] state of physical, emotional, mental, and social well-being related to sexuality, which requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination, and violence. (WHO, 2006, p. 10)

Consent. According to the Merriam-Webster dictionary (2022), consent is a “compliance in or approval of what is done or proposed by another.” Another definition of sexual consent provided by Syme and Steele (2016) states that “sexual consent is the ability to voluntarily make a reasoned decision whether or not to engage in sexual activities” (p. 495).

Constructs Reframed

Even though these definitions are seemingly straightforward, sexual consent is a complex issue, particularly when discussed in relation to elders with cognitive impairment. Specifically, because consent requires reasoning as an informed decision, elders with dementia may have a diminished capacity to offer it. Thus, sexual consent in older adults with cognitive impairment is usually discussed in relation to consent capacity. The term consent capacity refers to “a professional clinical judgment as to whether an individual has the requisite minimal ability to successfully carry out a specific task” (Moye et al., 2013, p. 158).

However, clinical judgment leaves a lot of room for subjective interpretation, which can negatively influence older adults. For the aforementioned reasons, the following conceptual definition of sexual consent is more fitting for people with dementia: sexual consent is an expressed desire to voluntarily engage in a sexual activity, with the ability to express assent and dissent either verbally or non-verbally.  

In summary, the general definition of sexual consent is subjective and open to a level of interpretation that can contain biases such as ageism, and with them an ignorance of the sexual rights and agency of older adults. This tension is most visible in care facilities, as that is the place where older residents are most dependent on staff.

Discussion question: Do you think a specialized definition of sexual consent is necessary for people with dementia? If so, what should be part of the definition for sexual consent, and why is that?

Frameworks of Consent

There are a few frameworks that are used to determine sexual consent in the United States. Since the United States is a litigious country, the legal framework of consent is unironically the most prominent. The biomedical framework is also widely used, due to the biomedical ethics principles that are universally acknowledged within healthcare. Importantly, several researchers have attempted to develop a more inclusive and holistic ethical framework around sexual consent by people with cognitive impairment over the past decade. The sexual consent potential model presented here (Huitema-Nuijens, 2022) is perhaps the most recent person-centered model centering aging individuals with dementia.

Legal Base for Consent

The law is the main determinant of sexual consent capacity in the United States. Although each state has its own legal definition of what constitutes sexual consent, most jurisdictions use the following three criteria: (1) knowledge of relevant information, including risks and benefits; (2) comprehension of the situation or reasonable justification consistent with the individual’s values; and 3) voluntariness (i.e., a stated choice without coercion; ABA & APA, 2008).

Laws surrounding sexual consent capacity seems to focus on people who are temporarily impaired due to drugs, alcohol, or a mental episode. Consequently, there is no specific legal standard to determine sexual consent for older adults who have dementia and are progressively declining in cognitive functioning (Huitema-Nuijens, 2022). This means that older adults who suffer from dementia are very close to being permanently restricted by laws intended to protect people (Boni-Saenz, 2015).

The Nursing Home Reform Act is the only federal act that focuses on the rights of older adults living in care facilities. Aside from the freely interpreted right to privacy, there is no clarity around freedom of sexual expression or consent capacity.  Consequently, a care facility is not obligated to support older residents in fulfilling their sexual needs (Schubert, 2015).

In conclusion, with the current legal standard summary, which is focused on temporary cognitive impairment and a federal bill of rights that does not include sexual expression, residents with dementia residing in long-term care (LTC) are very restricted in their sexual freedom of expression. In general, the legal standard has seemingly set the bar so high for older adults with dementia that most of them would be deemed incapable of consenting to any sexual behavior (Hillman, 2012):

“What is at stake here is that residents with dementia should not be held to a higher standard of consent than the general public” (Wilkins, 2015, p. 719). 

Apart from the legal framework around sexual consent capacity, the biomedical framework has been dominant in healthcare settings. This is especially true where aging is concerned. Thus, the relationship between the biomedical framework and sexual consent in older adults with dementia will be discussed in the next section.

Medical Framework for Consent

Biomedical ethics principles are globally acknowledged throughout the healthcare industry. Namely, the biomedical ethical framework contains four principles: respect for (1) autonomy, (2) beneficence, (3) nonmaleficence, and (4) justice (Mahieu & Gastmans, 2012). To enable self-determination, respect for autonomy is necessary. Beneficence refers to helping others, including the promotion of wellbeing and humanity. The principle of nonmaleficence is meant to prevent infliction of intentional harm (Mahieu & Gastmans, 2012). Finally, the biomedical principle of justice indicates the importance of fair and appropriate treatment out of respect for individuals’ rights.

“The biomedical principles support the permissibility to intervene with the residents’ sexuality” (Grigorovich & Kontos, 2018, p. 220). 

The biomedical principles sometimes receive criticism with regard to older adults with dementia who receive a form of LTC. The major critique is that the biomedical principle of nonmaleficence does not offer practical guidelines for staff who work with elders experiencing dementia (Grigorovich & Kontos, 2018). Without guidelines, staff tend to err on the side of preventing harm to older adults with dementia given their perceived vulnerability and need for protection (Hayward et al., 2013; Vandrevala et al., 2017; Villar et al., 2019). However, while leaning toward preventing harm, staff often neglect and restrict the autonomy of older adults with dementia. Consequently, using biomedical ethics as a sole decision-making framework for sexual consent does not adequately support older LTC residents with cognitive impairment, but rather restricts their sexual expression without regard for their consensual sex potential.

Sexual Consent Potential Framework

To support older adults with cognitive impairment, the sexual consent potential framework is “centered on human rights, strength, and possibilities” (Huitema & Syme, 2023, p.  ). The sexual consent potential model moves away from the legal and biomedical framework by focusing on a salutogenic approach linked to older adults’ agency and possibilities (Huitema Nuijens, 2022). The salutogenic approach generally directs its attention towards elements that promote human health and overall well-being, as opposed to concentrating on factors that lead to disease (pathogenesis), such as dementia.

With respect to the residents’ current, perceptible conduct, the focus of the sexual consent potential model includes underlying principles of client-centered care. The emphasis on clients enables strategy tailoring that meets residents where they are (Huitema-Nuijens, 2022).  According to the selective optimization and compensation (SOC) hypothesis (Baltes & Baltes, 1990), for instance, one underlying principle of client-centered care is the optimization of residents’ social environment. Optimizing the environment around a resident such that it is accommodating and fits their needs connects with the sexual consent potential framework.

Examples of optimization of the environment could include providing training in skill development, as well as guidelines and policies for LTC employees that focus on acknowledging and managing bias and understanding sexuality in the elder community. The conceptual model of sexual consent potential serves as a guide for both the staff and residents because it provides determinants and offers a thorough plan for conducting assessments. Consider the following factors and scenarios in practice.

Consent Determinants. Most determinants are resident-focused, although a few are also concerned with the social and physical environment. Therefore, it is crucial to first optimize the social and environmental factors in the area where the older adults reside as much as possible before initiating an assessment for sexual consent potential. After social and environmental factors have been gathered and optimized, service providers can place focus on Resident-level Determinants (see Table 1)

Table 1

Resident-Level Potential Factor	Yes	No
The resident has the ability to assent and/or dissent, either verbally, nonverbally, or through behavior.
The sexual act is voluntary.
There is no sign of abuse or harm within the sexual relationship.
The resident is able to respond to verbal, nonverbal, and/or behavioral communication of the sexual partner.
The resident has the ability to communicate, either verbally or nonverbally.
The resident has the ability to initiate and stop the sexual activity.
The residents has the ability to express enjoyment/pleasure, either through behavior, or (non)verbal communication, in relation to the sexual partner.
The resident is capable to make a decision whether or not to be intimate.
The resident either has the ability to choose a socially acceptable time and place for sexual behavior or is willing to be directed to a socially acceptable time and place.
The resident is alert enough to make contact with others.

Residents level Determinants of Residents-Level Determinants of Sexual Consent Potential

The resident-level determinants in Table 1 must be utilized in the context of the sexual consent potential framework; they are not intended to be used separately as a stand-alone sexual consent checklist. There are crucial steps to follow during assessment of a sexual consent issue with older LTC residents. Thus, the sexual consent potential assessment should be viewed as a dynamic process that necessitates frequent adjustments since dementia residents’ behaviors, environments, and levels of lucidity are prone to change. Ensuring that these grounding principles are at the core of the assessment and team process is the first stage in the process of unlocking the sexual consent potential.

Utilizing the sexuality assessment tool (SexAT) is another important step in client centered older adult sexual consent care (Bauer, et al., 2014). SexAT findings can influence facility-wide policies and adjustments that can improve older adults’ social environment and maximize their sexual potential. Simple adjustments might serve to improve the environment, such as workarounds like signs or privacy symbols on doors that do not close, innovative scheduling to keep rooms empty, and agreements among staff to guarantee residents’ privacy.

The next step would be to put together a (multi-disciplinary) team, specifically one made up of staff who are keenly familiar with the resident in question. I advise beginning the assessment process with just the team and excluding the family at first because including family members involves many factors respecting the sexual needs of their older and cognitively impaired relatives. Before starting this process with the team, the framework and requirements for the assessment should be discussed. The most important factor to consider at this point are current, observable behavior. Behavior that could have happened, or that might happen in the future etc., should not be discussed. Additionally, focus should be on residents’ needs, meaning their values, norms, and biases will not be part of the discussion.

With the team that is gathered, providers should move to define the intimate act in question for the specific resident(s) and evaluate the social environment in which the act(s) took place. Once everyone reaches an understanding, the team should next examine the potential and abilities of the residents. Remember that despite the characteristic general deterioration in executive functioning and memory of dementia, some components, such as emotions, automatic motor abilities, and being conscious of the present moment, are still there. Even without the ability to articulate past or future connections, people with dementia can and do enjoy the company of others and feel affection for them (Huitema-Nuijens, 2022). A defining feature of sexual consent potential is the idea that everyone is unique and has capabilities that can be realized by improving circumstances and reducing danger.

With the potential and abilities established, teams should discuss individual determinants (e.g., see Table 1) in relation to the specific resident (and behavior) being assessed. It is paramount to define the level of intimacy and/or what sexual behavior entails in relation to specific determinants. This also includes providing relevant data/observations to assess the current sexual potential of the resident.

Once the team has (1) reached an agreement on the determinants, (2) established a clear definition on the intimate level of the resident, and (3) identified opportunities to enhance the social and built LTC environment, an action plan should be developed to fulfill the intimacy needs of the resident. Given the likelihood of change in residents’ behavior and needs, the plan must be regularly reviewed and adjusted after it is created. The action plan, the determinants, and the definition must be regarded as changeable. The action plan may furthermore need adjustment, which could mean removing, adding, or changing aspects like the definition, the personalized determinants, or the planned workarounds.

Residents’ behavioral, physical and cognitive states can change, and the team may discover new needs or opportunities as they get to know residents better and observe how they respond to their action plans. Thus, the sexual consent potential model has the power to enhance teams and organizations, however, its most important benefit is resident well-being.

Depending on the facility, the upgrades required to realize the full potential of the structures will differ.

So far, family involvement has not been included in the process, as it is dependent upon many factors, including type or degree of family relation, previous experience with a particular family member, type of guidelines that a care home has in place, and type of sexual expression that is defined. These various factors determine whether or when a family should be involved. In general, I suggest including family after the action plan has been developed. Discussing the framework used, relevant definitions and determinants, and the plan established demonstrates a client-centered approach and determination by the team to focus on a resident’s agency and wellbeing. Keep in mind that it is important to discuss everything as a team first so that the framework(s), definitions, and action plan may be effectively explained to the family.

Real Life Examples

Rayhons Court Case  

Following their respective widowhoods, Mr. and Mrs. Rayhons married in 2007 after first meeting in their church choir. They had a caring and affectionate connection, according to those in their immediate vicinity. Unfortunately, Mrs. Rayhons started to experience dementia and had to be placed in a nursing facility. Mr. Rayhons, a nine-term Republican state senator, paid his wife morning and evening visits. Although the nursing home advised against taking long outdoor journeys, he nevertheless accompanied his wife to church every Sunday.

Suzan, a daughter from Mrs. Rayhon’s first marriage, voiced concerns to nursing home personnel about her mother’s capacity to give consent to sex. The doctor at the home concurred with Suzan, and after discussing the idea with Mr. Rayhons and getting his approval, suggested that Mrs. Rayhons refrain from having any sexual intercourse.  Suzan concurrently petitioned successfully for guardianship of her mother and asked that future interactions with Mr. Rayhons be restricted. However, after some time, Mrs.  Rayhons was switched from a private room to a double room and her roommate claimed that she heard sexual noises on May 23, 2014, after Mr. Rayhons closed the curtain separating the two beds.

According to security camera footage reviewed that evening, Mr. Rayhons was seen leaving his wife’s underwear in the washing basket in the corridor outside the room. Eight days after being told by staff that his wife could not consent to sexual activity, and shortly after Mrs. Rayhons passed away, Mr. Rayhons was detained for having intercourse with her. Mr. Rayhons was cleared in a subsequent legal proceeding; however, it is unclear if this was because there was no evidence that any sexual activity had occurred or because there was no proof that his wife could not have given him sexual consent.

Discussion questions: What kind of framework is used by the care facility of Mrs.  Rayhons? And how would staff have intervened if they followed the sexual consent potential model?

Mr. K and Mrs. C

At Aging Hearts Long Term Care, everyone knew the sweet couple, Mr. K and Mrs. C. They walked through the hallway together, ate meals together and simply enjoyed being around each other. They also held hands, kissed, and hugged regularly. Both Mr. K and Mrs. C were widowed, had dementia, and required 24/7 care. The children of Mr. K were supportive of the intimate relationship and whenever they took their father on an outing or out to dinner, they invited Mrs. C along. Mrs. C.’s children were not amused, however, and did not want their mother to have a relationship with a man other than their father. Mrs. C’s children further believed that she only spent time with Mr. K because she thought he was her husband. In other words, her children thought that their mother’s relationship with Mr. K was based on a dementia-induced misconception, and if she knew the truth, then she would never have entered into the relationship. Correspondingly, they felt that Mr. K was taking advantage of her by pretending to be her husband and they suspected that he would try to have sex with her.

LTC Staff observed that both Mr. K and Mrs. C were always very happy to see each other, and that they seemed to have had an instant connection. They talked about the food, staff, and weather, laughing freely. Sometimes when Mrs. C felt tired, she would tell him that she just wanted to sit outside and enjoy the weather. He always accommodated her wishes. However, while they always seemed to be in good spirits, Mrs. C called Mr. K, “Bill” sometimes, which was her late husband’s name. Mr. K did not seem to notice when Mrs. C called him by her ex-husband’s name.

Discussion questions: Which determinants of the sexual consent potential model can you say “yes” to in regard to Mrs. C? Do you think family should be involved in decisions of sexual consent in this case? Why?

Take Away

All healthcare professionals should advocate for older adults’ agency, rights, and sexual needs. The feelings of attachment, love, and lust are basic, natural states that human beings experience, including older adults. Having a special connection with another person improves not only older adults’ physical health and self-esteem, but also their overall quality of life.

As a healthcare professional, you can raise awareness about the type of framework utilized in LTC facilities and how it affects older adults with dementia. I urge all service providers and caregivers to promote training around bias towards older adults’ sexuality, sexual knowledge, and sexual wellbeing. Let us err on the side of love and potential for all.

Discussion questions: How comfortable do you feel discussing intimate topics such as sexuality with older adults or their families? What factors contribute to this comfort level? After reading about the sexual consent potential framework, how do you think it could influence your approach to assessing and supporting older adults with cognitive impairment in terms of their sexual expression?

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