Visitors and Resident Autonomy: Spoken and Unspoken Rules in Assisted Living

Abstract

Purpose of the Study:

This article explores resident autonomy in assisted living (AL) and the effects that visitors and visiting the AL have on that autonomy. We examine formal and informal policies that govern visiting in AL, stakeholders’ views and enforcement of these policies, and the complex arrangements that visiting often entails in everyday life in the setting.

Design and Methods:

Data are drawn from a multiyear ethnographic study of autonomy in AL. Research from multiple sites included participant observation, informal and in-depth, open-ended interviews of various stakeholders, and the writing of field notes. Research team biweekly discussions and the Atlas.ti software program facilitated coding and analysis of interview transcripts and fieldnotes.

Results:

Our ethnographic data highlight complicated factors related to visitors and visiting in AL. We discuss two important aspects of visiting: (a) formal and informal policies at each setting; and (b) how resident autonomy is expressed or suppressed through rules about visiting in AL.

Implications:

Our data underscore the importance of resident autonomy and quality of care in relation to visitors and visiting, especially how this relationship is affected by inconsistent and confusing formal and informal visiting policies in AL.

Many older adults in the United States live in long-term care (LTC) settings and the numbers will increase (Harris-Kojetin, Sengupta, Park-Lee, & Valverde, 2013). While nursing homes (NHs) are among the most widely recognized LTC setting, they house only 2.8% of the over-65 population at any one time (Centers for Medicare & Medicaid Services [CMS], 2013). In response to consumer demand for housing that enhances personal autonomy and dignity, and reflecting public policy to control LTC costs, assisted living (AL) was developed as an alternate residential approach to care for dependent older adults. The needs of dependent older adults range widely. Many needs for activities of daily living (ADLs), such as dressing or toileting, or instrumental activities of daily living (IADLs), such as using a telephone or maintaining personal medications, may be manageable in independent or community residential settings. However, for those individuals who lack a support to continue to age in their own homes, AL was developed as a home-like setting for older adults with acute needs and specifically as a setting that respects resident autonomy. That AL provides a social model of care is an important tenet of AL philosophy. Unlike NHs, which are medical facilities, AL is situated within the larger community and therefore the presence of visitors is, or should be, a normative part of AL life.

This article focuses on two aspects of ALs: resident autonomy and visiting by outsiders. When individuals move into a specialized residential care setting, their social needs are usually addressed in a variety of ways, both internally through programmed activities and externally through visits by family and friends. Both recognition and satisfaction of the social needs of residents are key among the more complex factors of resident autonomy and overall wellbeing.

Based upon our research, this article examines the relationship between resident autonomy in AL and the circumstances of visiting and visitors. We examine formal and informal AL policies on visiting as well as stakeholders’—residents, family members, frontline staff, and administrators—views on these policies as well as the effects of family on social support. Finally, after a background discussion of care issues and a description of our research methodologies, we describe and discuss our findings drawn from data collected at five AL settings over 4 years.

Background

The Growth of AL

There are estimated to be between 36,000 to 68,000 ALs in the United States, serving more than one million residents (Burdick et al., 2005; Eckert, Carder, Morgan, Frankowski, & Roth, 2009; Stefanacci & Podrazik, 2005). While definitions of AL and related forms of residential care may vary by state (Genworth Financial, 2014), there are a number of common features of AL. For example, as many as 90% of AL settings provide assistance with medication management and an additional ADL or IADL (Eckert et al., 2009). AL expanded upon earlier forms of housing into what has been referred to as “high-service, high-privacy” sector (Hawes, Phillips, Rose, Holan, & Sherman, 2003; McCormick & Chulis, 2003). For the purposes of this article, AL will refer to settings that provide room, board, and assistance with ADLs at a non-NH or nonskilled level of care (Gruber-Baldini, Boustani, Sloan, & Zimmerman, 2004; Zimmerman et al., 2005). ALs are usually required by state regulations to coordinate the following services: 24-hr care staff and oversight; provision for help with ADLs and IADLs; health-related services; social services; recreational activities; meals; housekeeping and laundry; and transportation services (Niles-Yokum & Wagner, 2011; Stefanacci & Podrazik, 2005). ALs vary widely in both type and culture. They differ in the extent to which they are willing to admit residents with high care needs, retain residents as their needs change over time, or tolerate degrees of resident autonomy. The services available in ALs may be dependent on philosophy of care, the financial balance-sheet, and on residents’ ability to pay (Golant & Salmon, 2004). Further, the availability of services to residents can vary significantly. Some settings have formal arrangements with home health agencies to provide episodic nursing care and assistance with ADLs; some may even encourage residents to leave the AL to attend adult day activity programs in lieu of providing their own (Genworth Financial, 2010). In general, ALs aspire to aid resident autonomy through emphasis on availability of choices and a focus on resident dignity and privacy (Butler, Gomon, & Turner, 2004). Despite the fact that some AL residents may resemble NH residents in acuity, all ALs are in theory nonmedical, community-based living arrangements that are not licensed as NHs and therefore do not undergo federal supervision. It is estimated that over 80% of AL residents require assistance with at least one ADL, and over 90% of residents need help with an IADL (Stefanacci & Podrazik, 2005). Understanding life in AL settings, as well as the issues faced by residents and staff members, is complicated as definitions of AL vary from state to state; additionally, AL companies, both non- and for-profit, may use unique designations for levels of care that make generalizations about services and care difficult.

Unfortunately, there has been minimal research on ALs as places of living or as environments analyzed from the residents’ points of view. In addition, until recently, there has been almost no research exploring residents’ experiences of personal autonomy and the social environment in these settings. This article is a contribution to these topics.

Autonomy

For the research described in this article, autonomy was defined as the ability of the individual to make and carry out decisions about how, with whom, when, and where to spend one’s time. The subjective meaning of autonomy for AL residents reflects larger cultural ideas on control and freedom, on personal predilection for self-administration, on a person’s assessment of her own state of health and functioning, and, significantly, on opportunities for or limitations to autonomy provided by the AL itself (Ball et al., 2004; Carder, 2002). Autonomy as a cultural construct is related most directly to the emphasis on individualism in the United States and its operationalization through control and the making of choices (Eckersley, 2006). The culturally constructed desire to experience autonomy is a deep part of American life and personhood. Americans interpret this cultural goal through a powerful discourse that suggests the preeminent values of control, choice, freedom, and agency, which are tied to the core cultural value of autonomy. Autonomy and agency also relate to issues of power, an important concern in AL (Holstein & Gubrium, 2000). Additionally, part of the discourse of autonomy reflects questions about the social permeability of the AL setting—who can enter and who must stay out—and the degree to which an AL can be freely accessed for social purposes by outsiders such as family and friends of residents (Jackson, Sullivan, & Harnish, 1996).

Maintaining autonomy is also central to quality of life for older adults (Ball et al., 2004; Steverink & Lindenberg, 2006). The presence of functional or cognitive impairments necessitating increasing care does not automatically mean an older adult is willing to forgo autonomy partially or completely, although some may feel more comfortable with proxy control (Morgan & Brazda, 2013). At the same time, however, independent living settings may not provide sufficient support for the increasingly complex needs of older adults (Eckert, Morgan, & Swamy, 2004).

The question of how autonomy is defined, experienced, produced, maintained or thwarted in AL is a critical one. In this regard our research sought to determine the forces that create, insure, or deprive residents of autonomy across several dimensions including visiting. Further, the meaning of autonomy to individuals and how this might be gradually relinquished or significantly claimed are important elements we explored. Specifically, and based on prior work, we also viewed “autonomy” as a practice, reflective of setting factors such as layout, size and profit status as well as variously reflecting individuals’ differing experiences and understandings of autonomy. For AL residents, autonomy may be most often expressed by choosing how or where or with whom to spend one’s time throughout the day. Personal needs are often fulfilled by interpersonal relationships with others. Within ALs, residents may struggle to remain connected to prior social networks that now are found outside the AL. Friends and peers must physically visit the setting or residents must travel out of the AL for them to feel “fully connected” to outside persons. Research has shown a relationship between social support and decreased levels of depression, increased well-being, and decreased risk of institutionalization for older adults (Steverink & Lindenberg, 2006). Therefore, on-going in-person visits with family and friends are especially critical to the wellbeing and dignity of older adults in AL. Visiting clearly has a role in the provision of social and emotional support to all AL residents regardless of health statuses.

Formal Visiting Policies

Policies such as formal “visiting hours” are common in AL. In many states, visiting rights are outlined under State Health Department statutes. In Maryland, for example, residents have the right to “meet or visit privately with any individual the resident chooses,” subject to “reasonable restrictions” (Department of Health & Mental Hygiene [DHMH], 2009). In California, guidelines stipulate that “visits are limited to reasonable hours of the day” (California Advocates for Nursing Home Reform [CANHR], 2013). The vagueness of these guidelines is easily tailored to unique settings, though they do not ultimately provide control by residents over visitor access. Subject to interpretation, staff members in a given AL may enforce guidelines quite variably.

From a policy perspective, erring on the side of caution by limiting outsiders’ access can protect ALs from potential liabilities. Safety concerns, in particular, drive many rules about daily life for AL residents, including if, when, and how a guest may visit them. From a policy perspective, one key aspect of visitors is that they are untrained in many activities with which they may wish to help residents. An AL may require a staff member to supervise dining, laundry, showering, or personal care, commonplace activities that can be fraught with potential safety hazards. An untrained visitor helping with dining, for example, may unintentionally facilitate choking, an outcome for which the AL is ultimately accountable. A visitor styling a resident’s hair with hot curlers may break in-house rules about appliance use or even start a small fire. Thus, ALs must negotiate risk not only with individual residents but also with each and every guest or visitor. Consequently, ALs may limit or simply reject the involvement of visitors in potentially hazardous daily tasks as the best means of maintaining safety and control. Some ALs may require signed waivers of risk to make ostensibly dangerous behaviors possible for residents. Finally, the safety of visitors themselves is also of concern. Residents may be unpleasant to visitors and staff must then negotiate often complex family dynamics that derive from negative interactions. Ultimately, it may be a safer outcome for residents and their visitors to stay within the AL setting rather than venturing outside for a trip, for example, to go shopping.

Research Design and Methods

This article is based on ethnographic data collected in a multiyear, multisite study of the meaning of resident autonomy in standard ALs and in affiliated dementia care units (DCUs). A key aspect of our research focused on distinctive constructions of autonomy among five AL settings, and these are discussed in this article using pseudonyms.

Research Settings

Our first site, Cedar Grove, is an “affordable” AL licensed for 60 residents in a semirural area. It sits among small homes on a two-lane road one block down from a busy highway. Cedar Grove was chosen for research because of its medium size, geography, socioeconomic status of the residential population, and its for-profit status. There have been a series of owners over time. During our research, a couple bought it as an investment and added a new wing. After sequentially firing two directors and attempting to run the AL themselves, the couple sold the AL to a local for-profit NH chain.

A second site, Walden, is considered a “progressive” AL for its relatively small size and person-centered focus. Walden is located in a suburban area and is composed of two buildings built several years apart, joined by a linking hallway with locked doors at either end. Thoreau House is designed for 16 residents who are described as fairly independent and with minimal medical needs; Emerson House is home to 12 residents with dementia and/or increased care needs. Walden was selected as a research site because of its philosophy, small size, and nonprofit status.

A third site for our research, St. Hildegard, is a religiously-affiliated AL that is joined via a walkway to independent senior apartments and a NH on its campus. Daily Mass is provided for residents. St. Hildegard was chosen as an example of a mid-size AL (60 residents) and for its nonprofit status.

The fourth site discussed in this research is Fairview, a suburban for-profit, chain-owned location that opened in 2010. Fairview offers both a three-story AL of 100 beds and an adjacent skilled nursing and rehabilitation center. Residents of the AL are housed according to acuity level, with the top floor providing the highest level of care.

Lastly, Chestnut Creek, part of a national for-profit chain, opened in 1995. Its two-story building sits on several wooded acres in an affluent suburb. It offers private apartments, companion suites, and shared rooms for 60 in the AL. Many of its residents transition to the DCU on the first floor, which houses 40 residents and includes spacious public areas and a private and secure fenced garden. At the conclusion of our fieldwork, Chestnut Creek’s census was struggling due to increased competition in the area from other large, for-profit chains.

Data Collection

Over 4 years, six ethnographers have spent time conducting participant observation and ethnographic interviewing with 68 residents, 65 staff members, 18 administrators, and 47 family members. Field visits occurred at various times of the day and week, including evenings and weekends. Formal ethnographic interviews ranged from 20 to 120min in length. Interviews were audio-recorded, professionally transcribed and were assigned pseudonyms, yielding numerous documents for analysis. Ethnographic field notes, totaling 370, were made based on participant observation and informal conversations. Consent was gained for all interviews, per approved Institutional Review Board (IRB) protocol (IRBs # Y10AF21138 and Y13AF21058).

Employing qualitative, purposive sampling (Denzin & Lincoln, 2011), we chose to interview: (a) staff across all shifts and job types (administrative, activities, care, dietary, housekeeping, and maintenance); (b) all residents who were cognitively-able to complete an interview, as determined by the ethnographer; and (c) family members who were active participants in the AL. We utilized ethnographic interviewing eliciting informants’ initial verbatim statements and responses to initial questions as starting points for additional questions and lines of inquiry, beyond those originally supplied by the interviewer or the interview guide, on critical topics of interest such as autonomy and social relationships. For example, this permitted an exploration of multiple perspectives, experiences, and biographies that were part of the AL setting (Li, 2008). As examples, questions in the open-ended interview guides included: “How do you spend your time here?” “Are you free to pretty much do what you want?” and “Has your idea of independence changed since you moved here?” Multiple terms—freedom, independence, making choices—we used to elicit information about the experience of autonomy in each AL. Interviews with employees focused on their experiences working within AL, in addition to opinions about and observations of the residents in the sites and questions of autonomy. Some individuals or “key informants” were interviewed multiple times to explore selected themes in greater detail and over time (Rubin & Rubin, 2005).

During phases of participant observation, ethnographers separately and together wrote field notes on everyday life in the AL (e.g., on meals; staff; dining; Resident Council meetings; interpersonal interactions among residents, staff, and family members; and various activities such as Bingo, crafts, and holiday parties). Participant observation relied on insights generated by field researchers through repeated observation of residents, family members, and staff members alone or in interaction (Wolcott, 2005). Field notes were made of observations, interactions, insights, and informal interviews with anyone within the AL setting.

Field notes and recorded interviews were transcribed verbatim, checked for accuracy by the ethnographers, and team-coded using inductively derived codes developed by the research team. All field notes and transcripts were entered into Atlas.ti software program to facilitate coding and qualitative analysis (Muhr, 2008). Rotating two-to three-person teams coded each document individually and met to reconcile any differences; this ensured coding integrity and reliability (See Eckert et al., 2009; Morgan et al., 2011, for more detail). Any coding discrepancies that could not be resolved by the coding teams were brought to the larger research team for resolution during biweekly meetings. Once integrity of coding was established, documents were coded individually. Analysis of the data involved running Atlas.ti queries using both code and word searches. For this particular analysis, word searches included “visit,” “visitor,” “visiting” and “visitation.” Word searches for “son/daughter,” “significant other,” “loved one,” “guest,” and “in-law” were also conducted. Lastly, we drew from the ethnographers’ extensive and detailed field-based knowledge of the five AL settings.

Findings

In our analysis, we identified three key areas that influence outside visitors for residents in these settings. In this section, we will first discuss what we found about visiting (through observations by our ethnographers, and informal and formal interviews) and then relate our findings to issues of resident autonomy. This is followed by a discussion of formal and informal policies on visiting, and finally by a discussion resident autonomy in its relationship to social policies on visiting.

What We Found

Our research led us to conclude that when older adults move into AL, they often newly feel a degree of distance from their previous social circles. For example, at Walden, resident Maureen Durke told us that her friends from the past “have all moved away.” Health decline and lack of transportation often inhibit friends from visiting. At all settings, many residents told us that they now have an entirely new circle of persons, and the expectation of AL staff is that new residents will bond with other residents, or, at the very least, spend time with them at meals and other activities. No one ever directly said that this new circle is replacing a resident’s old circle, but that appears to be the case; the old circle of significant others, we observed, rarely visits, except for a few close relatives like spouses or children. We also found that both old and new residents of AL often feel uneasy about inviting neighborhood friends and family to visit. We concluded that both diminished social circles due to age and a boundary connected to the institutional quality of the AL setting both acted to diminish outside social connections. We found that, with residence in an AL, visits may now feel contrived both to the resident and the visitor. It was rare to see residents visiting each other’s AL rooms; instead, residents congregate in public spaces (e.g., main lobbies, small alcoves, or activities areas).

At Fairview, resident Anna Lux told us how difficult friendships are to maintain, saying, “[There were] people that you could talk with, and we became instant friends – instant friends, but [a friend] got sick here and this is the thing, they pass away, they really do. You get to know them and then the first thing you know, they’re gone. They pass away.” She also discussed a desire to have a male companion to “sit with and talk with and eat with and just to have somebody that you could just walk with and…pass the time of day and be with. It’s just something I would like because in the apartment I had that, I always had that.” Lastly, she discussed a male friend who lived nearby in the community, but she hesitated to call him and invite him to visit her in the AL. Most of all she wanted someone “you could maybe shake hands with…or put your arm around them or something like that.” While there are no explicit rules at Fairview forbidding an outside visitor, Anna—as is often experienced by AL residents—felt that courting a male friend or visitor would be frowned upon by the staff as well as fellow residents.

We found that residents are often aware that the AL staff or management have the ability (or actively are) observing their visits by outsiders. This “oversight” has two meanings: (a) that staff members and others are observing residents and (b) that it is a possibility that these persons are judging their behavior. Some residents are wary. Given the possibility of such observation by staff members and other residents (real or imagined), residents then may feel uncomfortable inviting a grandchild, for example, to spend the night at the AL or a weekend with them at their new home. Indeed, resident rooms may be too small for guest accommodations and AL settings may be bound by both legal and practical health and safety concerns and so act to discourage or forbid overnight visits, despite the expressed belief that these rooms are a person’s home. Visits from a spouse or others who do not reside in the AL may also pose challenges. For example, visiting spouses must not only negotiate transportation, but also entry into the AL setting. Our research found that the AL settings we studied are poorly equipped (i.e., in terms of staff training, policies or protocols), to address sexual needs of residents including conjugal visits (Dobbs et al., 2008; Frankowski & Clark, 2009).

We also found that visiting hours and entry practices varied greatly even among the five settings in which we conducted research. What might be everyday visiting for community-dwelling older adults, such as a friend or relative freely walking into an individual’s home for a short social call, can be difficult or even unacceptable in AL settings due to unstated, but enforced, practices concerning the control of boundaries by staff members. Our fieldwork included accessing and analyzing setting websites, handbooks, and move-in materials, among other documentation, for protocols, including visiting hours; we found, unsurprisingly, that a visiting protocol can range from wholly uncomplicated (including little formalized in writing) to the distinctly complex and regimented to an extent that functions to purposefully deter regular and comfortable visits.

Formal and Informal Policies

In general, specific policies on visiting in ALs are often not officially displayed or documented, other than through a general statement about visiting hours, posted or not or part of a “package” of rules given to the resident and family upon arrival. This was the case in the ALs we are discussing here; their written or communicated visiting policies were sometimes obscure. We observed, however, that there are unspoken rules about guests and what they are permitted to do, which residents learn by trial and error or through informal word-of-mouth. In these five research settings, such unspoken rules clearly inhibit residents’ autonomy and also sometimes curtailed important decision-making in daily life. In some instances, rules about length of visits or staying overnight were unstated. AL staff members may create “informal rules” for particular friends or family, who are disliked by one or more staff members or are viewed as some sort of burden or as an impediment to medical or institutional routine and who are therefore seen by them as “overstaying” their welcome and are unwanted guests in the minds of the staff or management. Some rules can also be quite powerful. For example, in Walden, some family visitors were forbidden entry by the AL as a result of staff members’ knowledge of previous family violence or issues related to a previously identified lack of care and concern for the resident. In this case, such ad hoc rules served to protect the resident.

At Walden, formal social policies were also adopted in response to negative individual or troubling family visitors. At St. Hildegard, family members were given the opportunity at intake to provide a list of persons to disallow from visiting. Informational packets at St. Hildegard indicate that “visiting times are flexible” and emphasize that the AL is “the resident’s home”; yet the same documents maintain that residents are “subject to reasonable restrictions on visiting hours and places,” a term that remains ambiguous and therefore can be interpreted on an individual basis by managers. From 8:00 a.m. to 8:00 p.m., a staff member monitors the main doors at St. Hildegard. “After hours” guests must ring a doorbell in hope that a care staff member will greet them and permit access. For visitors who work full-time or maintain “untraditional” work hours, visiting can therefore become difficult. At the same time, Paula Furst, Executive Director at St. Hildegard, described the expectation of familial involvement, saying, “[T]here’s an expectation that [family] will be part of the caregiving, and that part involves them visiting and being in touch… Because until we get to know somebody, you know, we are not their family and that’s who they want to see.”

During one “new resident meeting” at St. Hildegard, an ethnographer observed a seemingly commonplace discussion of “no access” persons. An adult son, in preparing for his mother’s move there, provided a list of names of family members he did not want to have access to his mother. No justification or detailed explanation was required or provided in making the list. Nor was there any follow-up to review and approve the list with his mother, a supposedly autonomous resident. It was as if the adult son, not the resident, was the customer. This example in part highlights dynamics within ALs over defining who the real client is. In this case, the son was a private payer for his mother’s stay at St. Hildegard and this probably led to his consideration as the most powerful agent. However, there was no information to suggest that his mother was not able to make such choices for herself.

Autonomy Expression or Suppression

Visitors and Visiting

In our research, we saw that there is no standardized method of “informing” a resident of the arrival of a visitor. Even within one site, a visitor may be led directly to a resident’s room, asked to wait at the door with a staff member while a resident is told of the visitor’s arrival and called to the door, or allowed entrance with unaccompanied “free reign” of the AL. This inconsistency was seen at Cedar Grove, where resident Amelia Larke said, “And you can have visitors anytime really…You have to announce yourself, but there’s no problem that way.” Another resident at Cedar Grove, Stella Crandall, a resident, noted, “Anybody that wants to come in, they are always welcome.”

We also witnessed variation in allowable visiting practices from resident to resident. Some facilities consistently maintained strict, mandatory “sign in/sign out” paperwork, as was the case at St. Hildegard, whereas others kept an informal “in/out” clipboard near a main door that is not enforced or filled out, as was the case at Walden.

At Cedar Grove, we witnessed a variety of family and nonfamily visitors. Nonfamily visitors included social workers, visiting nurses, pastors, club members (e.g., Girl Scouts), community volunteers (Bookmobile), and children and pets of staff members. Indeed, many residents and their families selected Cedar Gove, in part, because of its affordability and close proximity to family and friends. Thus, residents at Cedar Grove received more frequent, albeit short, visits with family members compared to other sites; residents would often leave the AL for short shopping trips, or entertain visitors delivering supplies or special “treats.” In this way, many residents at Cedar Grove were kept in an active loop of ongoing family events.

At all of our sites, family visits were often associated only with off-campus medical appointments and many family members did not come at other times. Several family members of Walden residents told us they juggled multiple responsibilities (e.g., sick spouses or children) and consequently visits were short and infrequent. Walden and Cedar Grove were unique in that the staff allowed family members to organize their own in-house activities, such as Bible study.

Residents in the five sites often struggled with maintaining former social networks, but more difficult, we found, was adjusting to the shrinking of their networks as friends moved or passed away. Still other friends may themselves transition into LTC settings, develop transportation difficulties, or move in with family members in distant communities. Similarly, in some sites in which we worked, regulations limited information that AL staff could share with friends. If a resident who has a friendship with another resident moves elsewhere, this information may not be shared, and social contact can end abruptly with no explanation.

Lastly, family members often dominate residents’ social circles, and we determined that general AL residents fell into two camps: those with family members that visited regularly, e.g., several times a week; and those whose family members that visited infrequently or sporadically, some only for holidays and special occasions. Johnna Kwiatkowski, an adult granddaughter of a Chestnut Creek DCU resident, discussed her disappointment with her fellow family members following a large family birthday party for her grandmother, Midge, hosted at Chestnut Creek, which included multiple generations of siblings, children, grandchildren, and cousins. Johnna described the majority of guests as “self-absorbed,” and “so unaware of [Midge’s] needs.” She later admitted that the family’s disengagement may be related to sadness and anxiety from seeing Midge’s deterioration, adding “they were probably so shell-shocked to see [Midge]” and admitting there is a mourning process for family members; the others might have been “trying to just keep it together [for the party].” Johnna’s reflection exemplifies a common underlying cause of infrequent visiting by family members; staff echoed this sentiment, noting that families are often in denial about a resident’s care needs and that it can be harrowing to watch family visits, particularly as they decrease in frequency the longer a resident lives in AL.

Staff members also raised concern for several married couples at Chestnut Creek in the DCU, saying, “[They are] pretty reclusive within themselves…for the most part, they will stay in their rooms for the majority of the day with their spouse.” For other residents, particularly those with dementia, caregivers in particular recognize their central role in the residents’ social lives.

Discussion

If resident autonomy is a goal of AL, then it should be expected that residents have some degree of control over a wide variety of life elements, including the presence of visitors. If a programmatic analogy is made between an AL setting and a person’s own home, it is right that a person should be able to control who has access to them and who can come into their home. Legally, AL residents are entitled to visiting hours and a degree of control over who has access. However, such autonomous intentions are not even applied in AL. It was clear that the five AL settings that we describe here had no consistent definitions of visitor policies or practices. Control of who was defined and approved as visitors varied by setting and by person with, in at least one case, the approvals being determined by a family member and not the resident herself. Visitors were also “overseen” by staff members and residents were aware of, and uncomfortable with, such surveillance. There were concerns by management about the potential of visitors to do unintentional harm to the resident they visited if they were permitted to help out with daily tasks. Other settings did not trouble themselves much about visitors or the need to control them, and more or less permitted open access. It appears, however, that the mere fact of moving from the general community into an AL often produces changes in the social networks of residents. We found that many of the residents with whom we spoke described a process of separation from most of their friends and some of their family members that accompanied their move into AL. It was not that friends and family became fully detached from AL residents, but rather it was that the AL itself constituted a barrier; there was a disconnect between the institutional world in which residents now lived and the larger world from which they came. If contacts with outsiders continued, they became fewer in that there was now a barrier to negotiate, further complicated when outsiders themselves became frailer or sicker, or even passed away over time.

There is little doubt that the inclusion of visitors is socially and emotionally beneficial to AL residents. Visits from outsiders that are organized by activities staff in ALs are common practice and might include church groups, entertainment, children’s visits, and others. However, visits by people who are known personally, as friends, by residents appear to become less common after a move to AL. Commonly, friendship is now sought out among one’s peers residing in the AL, although this itself can be problematic, as many coresidents may be cognitively or physically impaired. The observation that close friendships can develop in AL is quite clear from our research and that of others. However, such developing friendships form a type of friendship replacement in which old friends who no longer visit or call are replaced by new friends who live inside the AL. Perkins et al. (2013), in research in ALs in Georgia, found that having a higher proportion of family ties in one’s social network was a strong predictor of well-being and that relationships “among coresidents generally were important but not emotionally close” (p. 495). The researchers also found that “having more close ties was associated with lower well-being” (p. 495). The cut-offs, monitoring, and surveillance of visitors, compounded by the fear of AL management of the potential for visitors to unintentionally cause harm to the residents, are not positive contributors to maintaining relationships and clearly impact residents’ autonomy and dignity.

Policy Implications

Our data suggest two important conclusions. First, much closer attention needs to be paid to the nature and meaning of visiting in AL. Evidence indicates that residents themselves should have primary input into the forms of their own autonomy if the promise of AL as home is to be met. Visiting must be seen as an expression of resident autonomy and desire, and every opportunity should be given to enhance the quality of this experience. The choice of “acceptable” visitors should not be turned over to adult children or other kin, unless the safety of the resident is at stake and a decision cannot be independently made by the resident herself. In all cases, we believe, the resident’s input should be sought. Attention should be also made to optimizing visiting hours for each resident so that all lifestyles can be accommodated and residents’ dignity respected. It may be the case that a child or friend cannot visit except at times that are inconvenient for the AL; suitable compromises must be found for such situations to prevent the AL from negatively informing the social environment and quality of life for residents. While the desire of a friend or other visitor to help care for the resident may be problematic in some ways for the AL, again compromise must be sought for in some cases. Individuals may want to continue life-long patterns of interaction that would now be enacted by feeding, setting one’s hair, or helping with a shower. It is possible for staff to actually train visitors in these tasks, or for risk agreements to be signed, so that the possibility of problems or liability is minimized, positively shaping the future social environment of AL.

Second, it is clear that ALs should pay much more careful attention to precisely what resident autonomy consists of. Decisions about resident autonomy should be left, as much as is possible, to the residents. Clear ideas of what resident autonomy consists of and what domains of behavior and interaction are to be autonomous should be the object of much more careful thought by staff members, family members and AL management. Sometimes, an inability to promulgate a policy consistently promotes autonomy and other times it may hinder it. Similarly, the effects of “control” and “surveillance” by staff members on individual residents should be thoroughly thought through and evaluated to see if they contribute to a fuller resident autonomy, or not.

Funding

Research described in this article was supported by a grant and supplement from the National Institute on Aging (R01AG032442; A.C. Frankowski, and R.L. Rubinstein, Co-PIs). We are grateful to the NIA for its support of our research.