Understanding Sexual Freedom and Autonomy in Assisted Living: Discourse of Residents’ Rights Among Staff and Administrators

Abstract

Objectives:

In contrast to nursing homes, assisted living (AL) facilities emphasize independence and autonomy as part of their mission. However, we do not know to what extent this extends to sexual freedom and autonomy.

Method:

Using grounded theory methodology and symbolic interactionism, we examine how staff and administrators in AL facilities discuss residents’ rights to sexual freedom and how this influences the environment of AL.

Results:

Staff and administrators engage in a contradictory discourse of residents’ rights that simultaneously affirms the philosophy of AL while behaving in ways that create an environment of surveillance and undermine those rights.

Discussion:

A discourse of residents’ rights masks a significant conflict between autonomy and protection in regards to sexual freedom in AL.

Assisted living, Autonomy, Long-term care, Residents rights, Sexuality

As many as one million Americans reside in assisted living (AL) facilities, and this figure is expected to increase (National Center for Assisted Living, 2014; Park-Lee et al., 2011). Although regulations vary among states, AL facilities share a philosophy which includes a homelike environment that emphasizes consumer choice, autonomy, privacy, and control; services designed to maintain independence and aging in place; and 24-hour watchful oversight (Hawes, Phillips, Rose, Holan, & Sherman, 2003; Utz, 2003). It is important to understand how these facilities impact quality of life for residents (Ball et al., 2000). Despite a social model of care that emphasizes individual choice and autonomy (Utz, 2003) and state requirements regarding residents’ rights (Carder, O’Keeffe, & O’Keeffe, 2015), residents’ autonomy may be significantly curtailed. Extant research has examined dimensions of autonomy and independence in AL (Ball et al., 2004; Perkins, Ball, Whittington, & Hollingsworth, 2012), but has not explored the impact on residents’ choices regarding sexuality and intimacy.

Sexual activity does not necessarily decrease as people age (Karraker, DeLamater, & Schwartz, 2011). Although the frequency of sexual activity in older adults is lower than in younger adults, the majority maintain interest in sexual and intimate behavior (Lindau et al., 2007). Moreover, engaging in sexual relationships is associated with psychological and physical well-being (Bancroft, 2007). Rather than being a function of age, many of the determinants of sexual inactivity are social—less access to healthy partners as well as discomfort with new dating norms after widowhood (Karraker et al., 2011).

Engaging in sexual activity requires autonomous decision-making. Autonomy encompasses independence, self-determination, and freedom from external coercion (Agich, 2003) and is associated with quality of life (Ball et al., 2004, 2005; Eckert, Carder, Morgan, Frankowski, & Roth, 2009). Long-term care (LTC) may be fundamentally at odds with autonomy because older adults utilize LTC when they can no longer live independently (Agich, 2003). However, because AL emphasizes a social model of care, it can facilitate autonomy more so than living independently (Perkins et al., 2012).

Despite a philosophy of resident choice and control in AL, the approach to autonomy varies widely (Ball et al., 2004). In fact, some may value compliance and passivity in residents as much as they do independence (Lidz, Fischer, & Arnold, 1992) and the actual choices residents have may be limited to things such as the dinner menu (Ball et al., 2004). Routine regulations, restricted capacity, the maintenance of order and efficiency, and resource constraints also interact to impinge on individual choices (Ball et al., 2004, 2005; Eckert et al., 2009, Lidz et al., 1992). In addition, the desire to protect and maintain residents’ health and safety may also constrain their autonomy. Thus, protection and autonomy are often in conflict, resulting in a moral dilemma between balancing risk and promoting autonomy (Collopy, 1988; Eckert et al., 2009).

State-level policies regulating AL vary widely and emphasize issues of health and safety (Carder et al., 2015; Polzer, 2013). Georgia, where this research takes place, has established standards for the operation of personal care homes and AL facilities (Office of the State Long-Term Care Ombudsman (Georgia) [OSLTCO], 2008). These guidelines outline a set of residents’ rights that guarantee a minimum degree of privacy and autonomy. These rights emphasize autonomy in medical decision-making, finances, and citizenship rights. However, some address the social life of the residents. For example, residents have the right to visit privately with whom they choose and have uncensored communication. If they are married, they have a right to share a room, and the facility must provide at least one space for private visitation during normal visiting hours (OSLTCO, 2008). Although rights to sexuality may be part of personal autonomy and freedom, they are not explicit in LTC.

To date, little research has explored whether these policies and the philosophy of AL translate into practices that support residents’ choices regarding sexuality and intimacy. Existing research has focused on nursing homes and illustrated negative staff attitudes toward sexuality as well as ethical concerns regarding cognitive impairment and consent (Elias & Ryan, 2011; Roach, 2004; Wilkins, 2015). Although less structured than skilled nursing facilities, the schedules, rules, and regulations of AL do interfere with resident autonomy (Ball et al., 2005) and likely extend to sexual freedom.

Conceptual Framework

We use symbolic interactionism as a sensitizing framework (Charmaz, 2006) and starting point for our analysis. Within grounded theory, sensitizing concepts are used inductively to inform the research and guide the analysis (Charmaz, 2006). Because symbolic interactionism emphasizes the creation and interpretation of meaning, especially within language, it complements a grounded theory approach (LaRossa, 2005).

According to symbolic interactionism, people act toward each other or things based on the shared meanings, not because of any objective reality (Blumer, 1969). Meanings of things arise out of social interactions and are reinterpreted over time (Blumer, 1969). Furthermore, these meanings are not static; they are continually reimagined and reproduced (LaRossa & Reitzes, 1993). Using symbolic interactionism, we examine the accepted meanings surrounding sex and aging. Additionally, we look at how people construct ideas about appropriate or problem behavior for older adults within AL. Through language and discussion, people make and convey meaning as well as coming to agreed-upon interpretations for behavior. In this research, we analyze what the sexuality of older adults’ means to people who work in AL, how they transmit those ideas and act on those meanings, and how those meanings might be shaped by the larger social structure. Finally, we explore how this impacts the sexual freedom and autonomy of AL residents.

Method

The data used for this analysis come from a 2-year (2009–2011), NIA-funded qualitative study, “Negotiating Sexuality in Assisted Living,” investigating how all stakeholders (residents, family, staff, and administrators) negotiate sexuality in AL facilities. The goal of this analysis is to explore how the structure of AL (i.e., facility norms, policies, and practices) impacts residents’ autonomy and sexual freedom. Using principles of grounded theory, we analyze the interviews and focus groups from staff and administrators who work in AL.

Data Collection

We purposively sampled six AL facilities in the metropolitan Atlanta area aiming for maximum variation in size, location, price, ownership type, and resident demographics. The PI enlisted the first three facilities using contacts in the AL industry derived from prior research by the research team. Using a list of AL facilities generated by the state LTC ombudsman office, the PI contacted 14 additional facilities, which fit our criteria, by mail, e-mail, and phone. Four refused because corporate policy prohibited participation in research. Five did not respond to multiple follow-ups. The PI and a graduate student visited the remaining five homes in-person and met with the administrators. Of these, two did not meet our criteria and the remaining three facilities agreed to participate. See Table 1 for a comparison of the homes.

Table 1.

Select Characteristics by Facility

Characteristic	Rosewood Hills	Somerset Manor	Forest Glen	Aster Gardens	White Sand Plantation	Sycamore Estates
Capacity	50	60	109	75	75	70
Number of residents during study period	43	48	90	65a	40	58
Ownership	Corporate	Corporate	Corporate	Corporate	Private	Private
Monthly fee range	$3,050–$3,200	$2,993–$3,850	$1,995–$4,075	$2,195–$5,545	$3,000–$3,700	$1,200–$4,000
Percent men	21	19	37	Not Reported	28	36
Percent racial minority	0	6	3	Not Reported	2	10
Percent younger than 65 years	0	6	6	Not Reported	0	0
Percent older than 85 years	67	48	6	Not Reported	77	57
Percent requiring assistance with two ADLs	43	13	10	Not Reported	50	22
Percent requiring assistance with three ADLs	43	23	20	Not Reported	50	78
Percent with dementia diagnosis	37	21	39	Not Reported	75	49
Dementia care unit	Yes	No	Yes	Yes	Yes	Yes
Percent unable to exit without assistance	67	21	10	Not Reported	60	0

Notes:. All figures are estimates from administrators and in some cases our observations differed from reported numbers.

ADLs = activities of daily living.

^aTotals reflect residents in dementia care unit for this facility, but not for other facilities.

Although there was variation in structural characteristics, the resident demographics, similar to those nationwide (Caffrey et al., 2012), were predominantly made up of older, White, women, who needed help with some activities of daily living. One of the homes chose not to share demographic information but was similar to the others according to our observations. Pseudonyms are used here for all participants and facilities. The Institutional Review Board at Georgia State University approved all of the procedures.

Study teams consisting of the PI and three sociology doctoral student researchers conducted data collection in three phases (two homes at a time) for a duration of approximately 6 months in each home. Prior to data collection, the PI conducted 40 hours of training in qualitative field research and research regarding LTC, aging, and sexuality. Data collection involved participant observation, semi-structured interviews with administrative and care staff, residents, and family members, as well as focus groups with staff (see Table 2 for summary). Researchers documented each visit with extensive field notes. All interviews and focus groups were digitally recorded and transcribed in their entirety. Following selection and consent from each facility, we began data collection by engaging in rapport building with staff, residents, and family members by attending residents’ council or staff meetings and including introductions in community newsletters. The PI conducted a semi-structured interview with the administrator in each home within the initial weeks of data collection. To further build rapport and an understanding of facility culture, our research team spent approximately 200 hours volunteering and observing day-to-day activities and interactions of staff, residents, and family members. Interviews were solicited through personal contact with residents and staff during observations, flyers distributed to staff and residents, and letters of introduction mailed to family members. All participants except administrators were offered a $25 incentive to participate. Although we cannot determine who refused passive recruitment efforts, all staff who were directly invited agreed to participate, possibly due to our rapport building and incentive. In each facility, we conducted open-ended semi-structured individual interviews with administrators (6), staff (22), residents (24), and family members (9). Administrator interviews took place in their offices, during working hours. The staff interviews took place after or before shifts in a private space within the facility, including private dining rooms, conference rooms, or administrative offices. On average, the administrator interviews lasted 50 minutes and the staff interviews lasted 40 minutes. Prior to conducting the interviews, respondents completed the informed consent process and answered a short demographic survey.

Table 2.

Data Collection Overview

	Rosewood Hills	Somerset Manor	Forest Glen	Aster Gardens	White Sand Plantation	Sycamore Estates
Participant observation (hours/visits)	25/18	33/15	26/16	31/23	39/29	48/31
Interviews
Administrator	1	1	1	1	1	1
Staff	3	4	1	3	7	3
Residents	3	3	7	4	3	5
Family	1	2	0	3	0	3
Focus groups (number of staff)	1 (5)	1 (3)	2 (10)	1 (4)	0	1 (5)

In addition, we conducted six focus groups with staff (27) which were predominantly made up of direct care workers, but also included two activity directors, two supervisors, one housekeeper, and one member of the dining staff. The focus groups ranged from 3 to 10 participants and lasted an average of 1 hour. To accommodate staff schedules and facility staffing needs, we conducted two focus groups at Forest Glen (a larger facility) and conducted additional individual interviews but no focus group at White Sands Plantation (a smaller facility). At each of the other facilities, we conducted one focus group with staff. Focus groups are a useful method, because they are ideal for illuminating norms and assumptions, eliciting sensitive information that might be difficult to obtain in an individual interview, and seeing how respondents interact and come to consensus on difficult topics (Madriz, 2000; Morgan, 2004). Although interview guides were different for each type of respondent, they focused on knowledge, attitudes, and experiences regarding aging and sexuality, and sexuality in AL. In order to focus on the experiences of staff and administrators, we analyzed field notes, staff focus groups, and staff and administrator interviews.

Analysis

We employed principles of grounded theory methods which are useful for analyzing social interactions and generating theory inductively from data (Glaser & Strauss, 1967; LaRossa, 2005; Strauss & Corbin, 1998). This approach emphasized constant comparison, with data collection, analysis, and theoretical sampling occurring simultaneously (Strauss & Corbin, 1998). Initial codes were created through open coding, a careful reading of transcripts and independent line-by-line coding (Strauss & Corbin, 1998), by the PI and five qualitatively trained analysts. These analysts included the PI, the original three doctoral students, an additional doctoral-level sociology student, and one master’s-level gerontology student. During this coding process, segments of text from the transcripts were read and compared with previous segments within and between transcripts to search for similarities, differences, and emerging trends in the data (Glaser & Strauss, 1967; LaRossa, 2005). Similar concepts were labeled and categorized into codes. Team members continued to code transcripts independently until saturation was reached. Under the direction of the PI, the team met weekly to compare codes and to resolve any coding discrepancies, refine code labels and definitions, and ultimately create a final coding structure. The PI and project manager regularly reviewed coding for consistency. Codes were added and deleted iteratively throughout the remainder of the open coding process to capture all participant statements within the codes. During the axial phase of coding, codes were continually collapsed and expanded until distinct conceptual categories emerged to derive major themes and subthemes related to sexual autonomy in AL. Tentative relationships or connections between the themes were explored, modified, and confirmed to inductively produce a model of residents’ rights in AL. During axial coding, analysts paid attention to co-occurrences of categories, context, contingencies, and strategies (Glaser & Strauss, 1967; LaRossa, 2005). For example, staff’s and administrators’ discussions of residents’ rights often co-occurred with a list of exceptions to those rights. Finally, we engaged in selective coding (Glaser & Strauss, 1967) where the conceptual model, a discourse of residents’ rights, emerged.

We used NVivo 10, a qualitative software program, to manage the data and analysis.

Results

The staff participants were mostly women and African American. The majority of the staff had been employed between 1 and 5 years at their present employer. A majority of the staff was younger than 45 years and had a high school diploma or equivalent. The administrators were all White and older. Most were women and college educated. See Table 3 for a comparison of respondents.

Table 3.

Sociodemographic Characteristics of Staff and Administrators

	Staff (N = 49)	Administrators (N = 6)
	n (%)	n (%)
Age (years)
0–34	18 (36.7)	0 (0)
35–44	14 (28.4)	2 (33.3)
45–54	11 (22.4)	1 (16.7)
55 and older	6 (12.2)	3 (50.0)
Gender
Female	44 (89.8)	4 (66.7)
Male	5 (10.2)	2 (33.3)
Race
Black/African American (non-Hispanic)	33 (67.3)	0 (0)
White/Caucasian (non-Hispanic)	10 (20.4)	5 (83.3)a
Other	6 (12.2)	0 (0)
Education
<HS	4 (8.2)	0 (0)
HS diploma or equivalent	43 (87.8)	2 (33.3)
Bachelor’s degree	1 (2.0)	3 (50)
Some postgraduate	1 (2.0)	1 (16.7)
Position (n = 49)
Activities	5 (10.2)
Care worker	31 (63.3)
Support staff	9 (18.4)
Supervisor	4 (8.2)
Tenure in position
<1 Year	19 (38.8)	0 (0)
>1 Year < 5 years	24 (49)	3 (50.0)
>5 Years	6 (12.2)	3 (50.0)
Experience in LTC
<1 Year	11 (22.5)	0 (0)
>1 Year <5 years	12 (24.5)	1 (16.7)
>5 Years	25 (51)	5 (83.3)

Notes: Data are presented in number (percentages).

HS = high school; LTC = long-term care.

^aOne administrator declined to report race.

The Discourse of Residents’ Rights

Our analysis identified a process by which a discourse of residents’ rights inhibits the ability of residents to engage in sexual and intimate behavior. Figure 1 represents a conceptual model that summarizes the key themes of this discourse. This discourse included language, beliefs, and behaviors, that were often contradictory and simultaneously reinforced and negated the philosophy of AL.

Figure 1.

Conceptual model of the discourse of residents’ rights.

In this discourse, respondents often affirmed that residents had rights while describing specific situations in which they did not have these rights. Additionally, they provided justifications for these exceptions. In order to manage these conflicting meanings, staff and administrators engaged in strategies that created an environment of surveillance, which further discouraged and prevented sexual and intimate behavior. The discourse of residents’ rights was composed of three main elements, affirmation of residents’ rights, justifications to deny residents’ rights, and an environment of surveillance. These elements simultaneously work to affirm, deny, and manage sexuality and autonomy in AL.

Affirmation of Rights

When asked about rules regarding sexuality and intimacy, administrators’ and staff’s responses reflected the philosophy of AL and residents’ rights. Administrators and staff asserted that the facility was the residents’ home, that they were adults, and that they had the right to live as they chose. There was clear consensus that older adults in AL were self-determining and should have the freedom to engage in sexual activity. Consistent with the philosophy of AL, they used words and phrases that were suggestive of a homelike environment in which older adults were able to maintain independence. Alice, who worked in the dining room said, “You know this is their home. It’s not ours. We just take care of ‘em. They just pay us to take care of ‘em.”

While affirming the rights of residents, what followed was a list of exceptions and qualifications to those rights. These exceptions were indicative of the conflict between competing goals and meanings in the philosophy and regulation of AL. Furthermore, this language symbolized major concerns that administrators and staff had regarding sexuality in AL, as well as other conflicts with AL goals such as watchful oversight and family involvement. This was illustrated in a discussion of sexual freedom in a staff focus group.

Frieda: I think they’re free to do whatever they want.

Maria: They can do what—exactly.

Lisa: Yeah, as long as it doesn’t harm anybody.

Maria: As long as it doesn’t have any harmful effects on them--physically, mentally, they’re free to do whatever they want to do. We are just here to provide care, and if the freedom they have would interfere with their care then we might have to do something.

This particular qualification illustrates the tension between protection and autonomy. Despite acknowledging that the AL philosophy emphasizes autonomy and choice, staff members were very concerned about harm to residents—physical or emotional. This definition of harm emphasized behavior that interfered with care. Although the meaning of harm was not explicit, this example illustrates how workers develop consensus about the notion of harm and use it to justify denying residents’ rights. Those justifications included watchful oversight, consent, and family concerns.

Justifications to Denying Residents’ Rights

Watchful oversight

Many of the administrators talked about “responsibility,” “liability,” or “watchful oversight.” Administrators took this responsibility very seriously. Heather, an administrator, emphasized this when discussing issues surrounding privacy. She begins with describing the rights of residents, but then qualifies it with the importance of responsibility.

Once again, going back to residents’ rights, we did a whole [training] on privacy, dignity, residents’ rights, knocking on the door to enter. I think at the end of the day, the message that we try to convey is that we are responsible for the safety and well-being. I mean, if you go back to our regulations, that shade of grey is at the end of the day, the assisted living community is responsible.

This quote signifies three things. First, like the previous focus group quote, it illustrates the conflicting goals between autonomy and concern for residents’ welfare. Second, it illustrates the gravity of her concern for responsibility to the well-being of the residents. Finally, it shows that despite talk and trainings about rights, the responsibility for health and safety often takes precedence. Betty, an administrator, describes the conflict that this creates and the difference between living independently and living in AL.

So I think sexuality, it’s nobody business but their own at that point because they are not under anyone’s watchful care. Now when they enter the assisted living it does become a little more blurred because we’re given the responsibility for watchful oversight. Well how do you define that when sexuality becomes an issue?

This demonstrates a conflict between autonomy, sexual freedom, and watchful oversight. Betty’s quote illustrates that administrators struggle with how sexuality fits into a philosophy of care in which both watchful oversight and autonomy co-exist. Watchful oversight is a central component of AL and influences what it means to live in this environment. And the family, as well as the state, holds the facility responsible for oversight.

Family concerns

Administrators’ and staff’s perceptions of family concerns are often used as justifications to impeding residents’ rights to sexuality. Hope, an administrator, states that “if something develops into something more romantically, if it’s okay with the families, then it’s okay with us. We would definitely discuss it with the family to make sure that they are on board with it.” According to administrators, families held the facility responsible for keeping residents safe. And they either viewed sexuality as a safety issue themselves, or believed that family would. Family involvement is central to the goals of AL for two reasons. First, family involvement reinforces a homelike environment, a core value of AL. Second, family members are an important marketing tool. Thus, staff and administrators often defer to family regarding issues of sexuality and intimacy.

After being asked about marketing, Linda, an administrator said, “I don’t have a large marketing-advertising budget so it’s word-of-mouth or the fact, you know, we’re here 16 years this April and got a good reputation.” Because referrals were important for new business, maintaining a good reputation necessitates that families be satisfied. In another part of the interview, Linda gave this example of deferring to family wishes regarding a couple in the facility who wanted to get married:

… the families had heart attacks over the fact that it would affect their money—that it would affect their pension, . . . because of the financial situation…And I had a minister to call me on the phone and said, “Is it okay if I come and marry these two people?” And I said, [laughing] “No, it’s not okay!”

In this case, the administrator intervened on behalf of the families to prevent a relationship from progressing. Linda shared that families were concerned about the long-term financial health of residents and the ability to continue to afford AL. Administrators know that families often manage residents’ financial affairs. Although this example was an outlier, it illustrates the extent to which facilities will go to attend to the wishes of family over the desires of the residents.

Families were also seen as important to the mission and philosophy of AL; they were part of creating and maintaining a homelike environment and were important for residents’ quality of life. They provided continuity in resident lives and facilitated aging in place. Heather, an administrator, discussed the importance of family.

It’s just the sense of family. I enjoy the open communication and the fact that families come with a different perspective. And family suggestions are wonderful, it keeps a line of communication for their loved ones as well. And it allows people to remain connected and involved and that’s, to me, is something that is absolutely vital. So we’re all about families. That’s really what we’re about.

This quote illustrates how family involvement and satisfaction were vital to administrators because they perceive family involvement to positively impact residents’ quality of life. As a result, family is important but is also used as a justification for denying residents’ rights to sexuality.

Consent

Another justification for hindering residents’ rights and sexual autonomy was concern about consent and cognitive impairment. Both administrators and staff were concerned about sexual abuse and saw it as their responsibility to guard against it. This quote from Rhonda, a direct care worker, illustrates this concern,

They grown, they know what they doin.’ And, if I feel that they ain’t in their right set of mind, then I was to try and stop it, but if they have a conversation with me, like I know they talking with plenty sense, I won’t say nothing to them.

Although consent was at the forefront of staff concerns, we were given no examples of resident-to-resident rape or sexual misconduct in any of the homes. Even when discussing consent and fear of abuse, workers provided an example of a consensual relationship. If cognitive impairment or dementia was a concern, then protection from potential abuse took precedence over the sexual needs of residents. Betty, an administrator, gave an example of how abuse was her primary concern.

I had a gal who probably should have been in a dementia unit. . . . The fella, more high functioning, was beginning to show signs of dementia and we would find her in his room sitting on his lap or he began to be very mobile and go to her room. That was incredibly awkward. . . . We did have to get families involved. And it was a little bit embarrassing with both families, but our responsibility, again, was if there’s dementia . . . it’s my responsibility that with her dementia that she not be abused.

Discussions regarding consent were often gendered as this one was. Although the examples provided demonstrated consensual acts initiated by both women and men, the concerns emphasized the potential sexual abuse of women.

Environment of Surveillance

The contradictory meanings comprising the philosophy of AL shape an environment where people talk about rights, but simultaneously violate them. Administrators and staff engaged in three strategies that deal with these conflicting meanings: a reliance on reporting, disregarding private space, and steering residents away from each other. These strategies enabled staff to inhibit the sexual freedoms of older adults in AL while at the same time asserting the primacy of their rights. These strategies are an important component of the discourse of residents’ rights. The result is an environment of surveillance that discourages sexual freedom.

Reliance on reporting

Despite the presence of sexuality and intimacy in these facilities, policies were scarce. Rather than have rules and procedures in place, administrators dealt with issues on a case-by-case basis. Although some facilities were more constraining than others, it was notable that none of the homes in the study had any formal policies regarding resident sexual behavior.

Additionally, almost none of the homes had staff training regarding sexuality. Aster Gardens was unique in providing a recent training on abuse and neglect, including sexual abuse, which emphasized reporting and encouraging staff to inform management if they saw anything “troubling.” The overall lack of policy and systematic training created an environment of uncertainty for the staff, which resulted in staff reporting everything, just in case. This quote from Maggie in a staff focus group illustrates the surveillance and the understanding of reporting requirements as a result of training.

Basically if you notice something, you have to report it to management. And they in turn go to the family members. They have the final say-so as to what lines are drawn, how far things can go, whether they want their family member in a relationship or not. And then we have to follow that.

This high level of reporting and surveillance, in which management needed to be informed of everything, was also shaped by the perceived expectations of family. Linda, an administrator, explains the value of increased surveillance when interacting with family members.

So I know what’s going on with each individual resident . . . many years ago there was an incident with a resident . . . one morning when I drove up to work, the family just practically attacked me in the parking lot, wanting to know what happened with Mother. And I didn’t have a clue. You know so that taught me a big lesson. So I don’t look stupid in the parking lot.

This quote demonstrates not only how administrators rely on staff reporting but also shows how this works in a feedback loop, where family concerns drive a reliance on reporting which further justifies a denial of residents’ rights. In the absence of formal policies about sex, administrators depended on surveillance in order to be informed when interacting with family. Without training, direct care workers develop strategies that further contribute to an environment of surveillance. These strategies include disregarding private space and steering or distracting interested residents from temptations to be sexual.

Disregarding private space

Responsibilities for care and 24-hour oversight resulted in staff frequently going in and out of residents’ private spaces. Although administrators and staff differentiated between appropriate sexual behavior in public and private spaces, we found that true privacy could only be obtained in interior spaces that have an additional door. Staff members have master keys to the main resident room doors. Even when a resident locks the main door, staff members often enter hastily with a quick knock to check up on the resident, administer care, or perform routine job duties without waiting for a response. This behavior, which we refer to as the “knock-and-walk,” can lead to the discovery of sexual behaviors between residents in spaces directly visible from the main door. Mae, a direct care worker, provides this example, “This couple was doing it on the couch, if they had been in their bedroom, it wouldn’t have been the first thing you saw when you walked in. They would have had more chance to cover themselves.” As this quote demonstrates, the meaning of private space was blurred when it was easily accessible to staff. Thus, a resident’s room is divided into semi-private spaces, such as a kitchenette and living room, and private spaces, such as a bedroom and bathroom. Because most of the rooms are studios, many residents lack a truly private space. Although staff state that residents are adults with autonomy, the knock-and-walk reinforces the belief that care and oversight take precedence.

Steering

The environment of surveillance is not only about monitoring and reporting but also about actively preventing sexual behavior. Staff interpreted their responsibility to include keeping residents, administrators, and family satisfied. They relied on steering, the act of distracting or redirecting residents to discourage sexual or intimate interaction. Mable, a direct care worker, tells the story of a married man with dementia who, when his wife was away, was flirting with and caught kissing another woman in the facility.

And he wants to go and give this other lady a kiss. . . . we had to separate [them]. She, his wife, had gone to the doctor that day. And whenever she goes out to the doctor, he stays [in the Dementia Care Unit]. So, it was just kind of, you know, ‘Come on let’s go, walk over here,’ you know. And they’d just kind of keep him separated.

In this instance, Mable used steering both to prevent the behavior and to keep the peace. Staff felt that preventing conflict about sexual relations was an important component of maintaining and supporting a homelike environment. As Marcus, a direct care worker, illustrates, steering was also to follow family wishes.

But if we catch them before it happens then we can have something to say. . . .And that’s one reason why when it gets to the point where the family disapprove of it or something like that then we have to disband them. And one go this way, one go that-a-way. We got to keep them apart. That’s when the staff plays security guard.

Steering was used to ensure family wishes were followed and to make sure that everyone in the facility was getting along. Additionally, steering kept residents apart that might be interested in initiating or engaging in an intimate or sexual relationship. The lack of policies and training, disregarding private space, and steering contributed to an environment of surveillance that discouraged sexual behaviors among residents. Moreover, these strategies inhibit sexual freedom and are a part of the discourse which simultaneously affirms and contradicts notions of autonomy and residents’ rights in AL.

Discussion

The primary goal of this qualitative study was to explore how the structure of AL impacts residents’ autonomy and sexual freedom. Drawing on principles of grounded theory and symbolic interactionism, what emerged was a discourse of residents’ rights about sexual freedom. Discourse, a transmission of knowledge, meaning, or ideas—verbal, visual, or a way of acting—is often contradictory and articulates power (Hesse-Biber, 2012). Our conceptual model (Figure 1) illustrates how rights can be simultaneously affirmed, denied, and managed. By framing resident sexuality within a discourse of rights, we illustrate how AL staff and administrators reinforce and excuse behavior that limits autonomy. Within AL, administrators and staff develop shared meanings regarding the residents’ rights, which are informed by the structure and philosophy of AL as well as the larger social context surrounding aging and sexuality.

Our research advances the understanding of autonomy in AL. Previous research has illustrated how responsibilities for managing daily operations and safety in AL encroaches on residents’ autonomy and independence (Ball et al., 2004, 2005; Eckert et al., 2009, Lidz et al., 1992). We found these restrictions on autonomy and independence also extend to sexuality and intimacy. As a requirement of licensure, AL facilities “must include 24-hour responsibility for the well-being of the residents” (Polzer, 2013, p. 44). In line with previous research, the workers in our study affirmed the social model of care in AL including watchful oversight (Ball et al., 2004), but justified controlling behavior that was perceived as harmful and not in the best interest of residents (Oakes & Sheehan, 2012). Herein lies the important distinction, is watchful oversight protective, to assist residents and mitigate harm, or is it restrictive, to prevent residents from engaging in behaviors that might lead to harm? Within our study, the staff and administrators engaged both interpretations of watchful oversight. Thus, underlying contradictions within the philosophy of AL problematize this in practice resulting in a discourse of residents’ rights, which renders violations of these rights invisible.

Additionally, the need for order and efficiency also means managing relationships such as attending to the wishes of family, reducing conflict, and making sure staff, residents, and family are getting along. Although AL emphasizes a social model where residents are seen as consumers, there can be confusion about who the consumer is—the resident or the family member (Carder & Hernandez, 2004). Family members usually choose the home and manage the financial affairs of residents (Ball et al., 2005). As a result, administrators were concerned about family reactions to residents’ sexual and romantic interactions and often deferred to family wishes. Thus, staff and administrators act to prevent and manage sexuality and intimacy, in order to reduce potential conflict, and staff used strategies such as reporting and steering to actively limit opportunities for residents to engage in sexuality and intimacy.

Furthermore, issues regarding the ability of residents to consent to sexual behavior caused concern. More than two thirds of AL residents have some level of impairment from Alzheimer’s disease or another form of dementia (Zimmerman, Sloane, & Reed, 2014) and an increasing number of older adults are aging in place within AL, resulting in an increasingly frail and cognitively impaired population (Ball, Perkins, Hollingsworth, & Kemp, 2010; Golant, 2008). Similar to nursing homes (Wilkins, 2015), administrators and staff in AL struggle with the tension between autonomy and protection and ethical dilemmas surrounding cognitive impairment and consent. Unlike nursing homes however, the philosophy of AL emphasizes maintenance of autonomy. This philosophy, and discourse of residents’ rights, may make AL facilities less likely to recognize and cope with these issues than nursing homes.

Ethical issues of consent and sexual freedom for residents with dementia are further complicated by social norms. Our findings demonstrate how the larger social context about sexuality influences how sex and intimacy are interpreted within AL. For example, discussion about consent reflected gendered social norms that dictate men are predators and women need to be protected (Crawford & Popp, 2003; Walz, 2002). Future research and policy development must be designed to reflect the structural context in which decisions about consent are being made.

The discourse of residents’ rights illustrates the contradictions between the philosophy and practice of care in AL. Without specificity about residents’ sexuality and privacy, staff and administrators develop their own standards. AL management should acknowledge this contradiction and develop policies and procedures to assist staff members with the delicate balance of privacy and watchful oversight. In addition, AL facilities can provide residents and family members with clear expectations. None of these facilities had guidelines regarding sexual freedom, an important component of self-determination, which would encourage autonomy in AL.

Policies and training regarding resident sexuality and intimacy must include issues regarding cognitive impairment and consent. The experience and expression of dementia varies greatly from person-to-person and over time (Kamel & Hajjar, 2004). Furthermore, the ability to consent is not static; people with cognitive impairment may be able to consent to some behaviors and not others with variation over time (Lyden, 2007). Wilkins (2015) argues that current evaluations of consent, which lack standards and are often based on a medical model, are flawed. An approach allowing staff, family, and the resident to come to a consensus about outcomes has the potential to maximize autonomy (Wilkins, 2015). This model emphasizing consensus could be adapted for AL.

This study has several limitations. This sample only included medium to large sized AL facilities in Georgia. Rules and regulations regarding AL vary by state (Carder et al., 2015) and attitudes toward sexuality vary by region (Baunach, Burgess, & Muse, 2010). Because Georgia regulations require AL residents to be ambulatory, residents may be healthier than those in other states and more able to engage in sexual activity. Furthermore, regulations in Georgia require training in residents’ rights within the first 60 days of employment (Carder et al., 2015). Because of this, staff and administrators may have been primed to affirm residents’ rights. Expanding this research to larger samples and a wider variety of geographical areas will allow for more complex comparisons and theoretical development. Additionally, issues surrounding autonomy are very different in smaller homes (Ball et al., 2005; Perkins, Ball, Whittington, & Combs, 2004) which were not included in this study. Finally, this study was cross-sectional. Examining these issues longitudinally would allow us to explore how the discourse of rights influences other stakeholders and changes over time.

In conclusion, we identify a discourse of residents’ rights that affirms the contradictory meanings in the philosophy of AL. There is significant conflict between protection and autonomy in regards to sexual freedom. Staff and administrators engage in behaviors which create an environment that hinders sexual freedom of residents. As a result, this discourse masks the tensions and contradictions within the philosophy of AL. Drawing on a symbolic interactionist framework, our research illuminates the ways microlevel interactions in AL hamper sexual freedom, reinforce stereotypical interpretations of older adult sexuality, and reduce potential conflict. Finally, issues of consent emerged as central to the discourse of rights, which are further complicated by gendered sexual norms around consent for older adults with dementia. Future research needs to disentangle issues of protection and surveillance from the right to autonomy and choice among this vulnerable population.

Funding

This work was supported by the National Institute on Aging at the National Institutes of Health (R21 AG030171).

Acknowledgments

The authors thank all those who participated in the study. They thank J. Lloyd Allen, Abhinandan Batra, and Marik Xavier-Brier for their assistance throughout the data collection process and appreciate the continued feedback and support of Candace Kemp and Mary Ball. An earlier version of this article was presented at the 2015 Annual Meeting of the American Sociological Society in Chicago, Illinois. The data analysis and the content of this article, however, remain the sole responsibility of the authors. C. Barmon wrote the article, performed analysis, and contributed to revising the article. E. O. Burgess planned the study, supervised the data analysis, wrote the article, and contributed to revising the article. A. A. Bender wrote the article, performed analysis, and contributed to revising the article. J. R. Moorhead wrote the article and performed analysis.

Author notes

Correspondence should be addressed to Christina Barmon, MPH, Gerontology Institute, Georgia State University, PO Box 3984, Atlanta, GA 30302-3984. E-mail: .

Decision Editor: Deborah Carr, PhD