Iatrogenic loneliness and loss of intimacy in residential care

Abstract

Background:

There is an international trend for frail older adults to move to residential care homes, rather than ageing at home. Residential facilities typically espouse a person-centred philosophy, yet evidence points to restrictive policies and surveillance resulting in increased loneliness and diminished opportunities for intimacy and sexual expression. Residents may experience what has been termed social death, rather than perceive they are related to by others as socially alive.

Aim:

To consider how the loss of intimacy and sexuality in residents’ lives contributes to iatrogenic loneliness experienced in residential care, and the importance of considering these issues together.

Research design:

The study utilised a constructionist methodology, investigating the meanings associated with intimacy, loneliness, and ageing.

Participants and research context:

Qualitative data used in this study are drawn from a larger dataset of a mixed-methods study. Interviews were completed as follows: staff, 21 individual interviews, and two groups with a total of 13 additional people; residents, 26 interviews with 28 people; and family members, 12 interviews with 13 people.

Findings:

Five key themes were identified in the data analysis: loneliness and relational identity, loneliness and functional relationships, loneliness and disrupted intimacy, loneliness and liminality, and loneliness and the built environment.

Ethical considerations:

The study was approved by a University Human Ethics Committee. Participation was voluntary. Consent was gained and confidentiality upheld.

Discussion:

Residents’ expression of intimacy and sexuality can be compromised through paternalism, ageism, restrictive policies, care-rationing and functional care, alienating residents from sustaining and developing significant relationships. Attitudes and cultural beliefs of staff and family members about ageing and intimacy, compounded by architectural design, may intensify loneliness.

Conclusions:

Nurses have a pivotal role in ensuring policies and practice enhance social citizenship.

Keywords

Citizenship intimacy nursing leadership older adults residential care sexuality

Introduction

Relationships are fundamental to human existence and include expressions of intimacy and sexuality. For most of us, sexual and intimate relationships shape identity as these relationships locate us socially and emotionally in the present, and over time. Although there is no age limit on the intrinsic value of expressions of intimacy and sexuality,^1,2 when an older people move into residential care what too many residents experience is loneliness. Miles and Parker³ drew attention to this issue several decades ago:

A nursing home should be a residence in which healthcare functions form the background rather than the foreground of the experience of daily life. In this home, encouraging relationships and providing privacy for sexual intimacy…are about allowing a profoundly human need to be met. The disabling loneliness of nursing home residents is partly constructed by policies that diminish relationships.³ (p. 41)

People living in residential care are not alone, but proximity does not equate with the opportunity for intimate and/or sexual connections. For the purposes of this study, we draw from the World Health Organization definition of sexuality, whereby intimacy may be, but is not necessarily a dimension of sexuality:

Sexuality is a central aspect of being human throughout life encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors.⁴ (p. 5)

Intimacy is a broad term, encompassing a range of experiences where there is the perception of meaningful connection, and may include physical, intellectual, emotional closeness and encompass a sense of continuity in the relationship.¹ Intimacy means social relationships that are not merely functional, and not a casual encounter where people coincidentally inhabit the same space at the same time. We are all selves in relationship,⁵ but the intimate or sexual nature of those relationships is something we must have the opportunity to choose. Ironically, studies demonstrate that people living in care homes experience greater loneliness than those who continue to live in their own home.^6,7 We concur with definition of Kitzmüller et al’s⁷ definition of loneliness: ‘the experience of lacking desired relationships and of feeling the undesired absence of intimate attachment and reciprocal empathic understanding’ (p. 214). While residents’ lives may be full of encounters, they may be devoid of intimate relationships. Functional relationships with staff do not address loneliness. Loneliness is understood, including by older persons, to be part of ageing, due to decreased social activities related to health problems, the death of friends and family, and children developing their own lives and relationships.⁸ Even where older persons wish to increase their level of intimacy, relationships are often complicated by limitations of their abilities, circumstances and opportunities.^1
–3

Background

There is ample evidence that the philosophical orientation of facilities, along with policies, education, and senior nursing staff guidance, assist in the development of an environment in which a duty of care and opportunities for intimacy are both addressed.^9
–11 Commonly, loneliness and the lack of intimacy and sexual expression in residential care are a failure of facility leadership to address older people’s sexuality through organisational philosophy, policy development, education and advance care planning.^12,13 We argue that residential care facilities optimally adopt a philosophical commitment to salutogenesis – a focus on the origins of wellness rather than pathology. A salutogenic approach is compatible with the concept of social dignity, which refers to how dignity is fostered through social interactions and recognition by others.¹⁴ Social dignity can be eroded by ageism paternalism, and overprotection. Pirhonen and Pietilä¹⁵ contend that when residents are not recognised as persons and treated accordingly, their personhood is compromised. Policy and education are vital to support staff reflection. Staff ambivalence about expressions of intimacy and sexuality may be due in part to the liminality of care homes; that they are both a place of care and a residence.¹¹

Liminal spaces such as residential care are betwixt and between places that are neither entirely one thing nor another and can be experienced as disorientating and disempowering. In the absence of a salutogenic approach, facilities focus on activities involving entertainment and distraction rather than those that foster the possibility of intimacy and sexual expression.¹⁶ Theurer et al.¹⁶ contend that a social revolution is warranted in residential care. They argue that superficial recreation activities, which leave loneliness unresolved, need to be supplanted by opportunities for intimacy. These authors argue that the biomedical lens through which staff and family members view residents with compromised function or reduced cognitive capacity can lead to a mix of over-protection and dehumanisation. Residents can be vulnerabilised, and their rights reduced or removed under the guise of managing risk,¹⁷ although too often the risk being managed is the reputation and legal standing of the facility rather than resident wellbeing. Emphasis on a narrow definition of consent may mean that residents are excluded from opportunities for intimacy, rather than staff and families using a wider lens of assessing wellbeing in order to make decisions about safety.^10,11 We concur with Victor and Guidry-Grimes’¹³ argument, that with policy and educational guidance, residential care staff are ideally positioned to ensure that capacity assessments are reasonable rather than excessively restrictive. We share their view that denial of residents’ sexual expression may result in significant harm, including loneliness. We consider that trivialising residents’ intimacy and sexual expression, for example, through remarks such as, ‘aren’t they cute?’, compromise social dignity.

Residential care facilities in Aotearoa New Zealand share many similarities with care arrangements in other developed countries. Although there are pockets of innovative design, for the most part, people continue to be allocated to rest home or hospital level care determined by their level of cognitive and physical impairment rather than their social and relational needs. These arrangements can result in couples being separated. In Aotearoa New Zealand approximately 33,000 people are living in more than 630 facilities.¹⁸ However, as with international trends the population is ageing rapidly, and The Ministry of Social Development predicts that the proportion of older people (aged 65 years and older) will grow from 13% of the population in 2009 to 21% by 2031.¹⁹ This growth adds urgency to the challenge of addressing loneliness in older persons in residential care. Contemporary loneliness research and research investigating intimacy and sexuality usually occurs in parallel, rather than converging. The overarching aim of research project was to interrogate and inform conceptualisations of consent in the domain of sexuality and intimacy in residential aged care. Our goals were as follows: (1) to analyse how people are making decisions in practice about sex and intimacy in aged care and (2) to use this information to inform the literature on ethical theory and discourses on consent and wellbeing. The aim of this article is to consider how the loss of intimacy and sexuality in residents’ lives contributes to iatrogenic loneliness experienced in residential care, and the importance of considering these issues together.

Methods

Design

These qualitative data are drawn from a national two-arm mixed-method study in Aotearoa New Zealand. Thorne’s²⁰ methodological approach, interpretive description, was used. This methodology is useful in applied health research as it eschews the binary of objectivity versus subjectivity and instead draws from factual material and social constructionist analysis in order to aid insight into the ‘messy’ world that is healthcare. The social constructionist paradigm focuses on how meanings are created, sustained, negotiated, and interrupted.^21,22

Procedure and participants

Purposive sampling of participants was used with a view to diverse characteristics of staff, residents and residents’ family members. The research team provided an introductory 20-min presentation about the study for staff at each facility. This process led to staff contacting the team to be interviewed. Senior staff then provided fliers to residents and family members and posters were visible in the facilities. Residents either contacted the team directly or via a family or staff member. The qualitative arm consisted of semi-structured interviews conducted between October 2018 and October 2019 with participants recruited from 35 residential care homes. Staff, residents, and residents’ family members were invited to contact research team members if they were willing to be interviewed. Project staff conducted 61 interviews with 77 participants recruited from the participating facilities. All interviews took place at a time convenient for the participants and in a safe and quiet venue in the facility that provided privacy and relative comfort. Interviews were completed as follows: staff, 21 individual interviews, and two groups with a total of 13 additional people; residents, 26 interviews with 28 people; family members, 12 interviews with 13 people. Interview length depended on participant engagement and fatigue; the shortest was 20 min, and the longest several hours over 2 days. In this report, quotations are identified by an initial letter indicated staff (S), resident (R) or family member (F) and a participant’s number. The gender of the participants completes the quotation identification (e.g. S1 F is a staff interview, and this participant was female).

Ethical considerations

The study was approved by a University Human Ethics Committee. Participation was voluntary. Participants were informed about the objectives of the study and written consent was obtained before interviews. They were also informed that any subsequent publications would respect their confidentiality and anonymity. The ethics committee was satisfied that the research team had demonstrated expertise in sexuality research with marginalised people. Regarding involvement of residents with mild cognitive impairment, we used the approach described by Brannelly²² to ensure that notions of protection did not exclude people unnecessarily.

Data analysis

Audio recorded interviews were transcribed. Thematic analysis, guided by Braun and Clarke’s²³ six steps of data analysis, was undertaken to identify key themes. These steps involve the following: preliminary familiarisation with the data, assignment of initial codes to describe content, search for patterns across the dataset, clustering themes, naming themes, and report writing. To ensure rigour with inter-rater reliability, the five members of the research team independently read and coded all transcripts. All team members then reviewed all members’ coding and through meeting and dialogue collectively developed themes.

Rigour

Transcriptions were reviewed by all researchers in this study for accuracy. As part of triangulation, all six researchers reviewed transcripts separately.²⁴ Member-checking was not carried out to protect residents’ privacy.

Results

Evident in our data analysis was that when residents, family members and staff spoke about intimacy and sexuality they typically also identified loneliness that residents experienced, or that staff and family witnessed. The first theme of relational identity highlights that the transition to residential care may exacerbate loneliness, underscoring the loss of intimate relationships. The second theme, loneliness and functional relationships, illustrates the importance for residents of having relationships with staff where the care is relational and therefore there is a level of intimacy that humanises interactions. The third theme, loneliness and disrupted intimacy, focuses attention on a range of obstacles to intimacy and sexual expression, from family interference to the invisibility of sexual diversity. The fourth theme, loneliness and liminality, explores the in-between space that is residential care; neither entirely staff’s workplace nor residents’ home. The fifth theme, loneliness and the built environment, draws attention to the architecture of care environments, which may inhibit expressions of intimacy and sexuality.

Relational identity

Participants were aware of an existential loneliness that most residents had to navigate and accommodate to live with a reasonable quality of life. Even if they had not lived in residential care, many were living on without their closest life companions who had died. Often the location of the facility meant people were removed from their communities:

Friends I had outside, I miss them. Whereas they might pop in at home; they won’t do it here and I find that I have lost a lot of friends, because I think–when I was out and had friends in these sorts of places, I would think twice before–you wouldn’t pop in on them; you’d make an arrangement somehow. It’s all just so different. Whereas friends down the street, going past would perhaps pop in and say, ‘G’day’. (R23)

Staff interactions and engagement with residents appeared to either deepen or ease residents’ loneliness. For some residents, the transition meant separation from a long-term spouse who remained in the family home or who required a different level of care. A daughter described the vital role of her mother’s relationships with staff as she experienced the intense grief of being separated from her husband:

She said it’s like a divorce. They were her words. The girls [staff] here are just lovely. When mum gels with someone she really does gel with them. Like, she tells us how the lovely the staff here are. They’re friendly; that’s the relationship they have. She trusts them; especially now. She loves them. (F2F daughter)

Although staff emphasised their readiness to accommodate family and friends, and their wish to create a home-like environment, residents frequently described residential care as an ersatz home, with one of the markers of the deficiency being the feeling of dislocation from a previous life. The following participant had not found kindred spirits in the facility:

I feel somewhat incomplete when you have an interest in anything in particular. You can’t get the full enjoyment out of some situations because of that. There’s a certain sense of limitation on most things that you do. That would come down to the social attitudes of the majority of the people that live here. (R9M)

Staff reported that they felt it was part of their role to help family members to adapt to having their relative live apart from them. One manager described how she advised a family member to limit their involvement for their own well-being:

I always say once or twice a week is plenty. This is with demanding high-needs people, because they’re really not going to know whether you’ve been the next day or not, and you’re totally basing your whole existence around this one person that is actually perfectly okay, and is not going to crumble to pieces if you don’t turn up one day. (S22F)

The above example illustrates the uncritical way staff can role model to family members that residents are assumed to be socially dead, or that there is such a level of cognitive impairment that the resident would not remember a visit. Although the manager may have considered her comments were freeing, this worldview may undermine a partner’s sense of loyalty, and the pleasure of the moment-to-moment intimacy of being with a person.

Loneliness and functional relationships

For the most part, residents appeared not to perceive that they had rights – they appeared to assume they had traded autonomy and privacy to secure physical safety, and assistance when they were no longer capable of full independence:

You’re very self-aware in a place like this. You don’t do anything unless you double-check it. You’re continually self-aware…you’re quite unlimited in your restrictions in your own private home, whereas here you have to abide by certain rules, which is part of the mode of operation. You couldn’t just free rein like you did at home. (R9M)

Resident 10 also said that the role of residents was to fit in to staff schedules and relinquish their personal preferences:

Routine is part of it. Whereas, when you’re living on you own you can just say, ‘oh sod it, I’m not getting up this morning’. It’s constricting to an extent, but you’ve got to fit in with the routine, and you get used to it. That’s what happens in a place like this. You can’t go and change the system; you’ve got to fit into the system here. (R10M)

In the above two quotes, the residents’ sense of their lives being shaped by care standardisation not in their control underscored the sense of the facility being an ersatz home. Few resident participants expressed any sense of entitlement or expectation of a different type of experience. A resident provided an account of her observations of the task-orientated care that exacerbated residents’ isolation due to the absence of a sense of emotional closeness with care staff:

I don’t think they’re [staff] that tuned to seeing the residents as whole personalities even. Here they call them ‘cares’, the chores that they have to do. They’re so busy running around doing their cares, that I don’t actually think they see you as a real person. I have someone comes in and puts moisturiser on my feet and legs. When she comes dashing in here at 8:30, to do them, she is only thinking about the care, she is not thinking about me as a person. She wouldn’t think to say, ‘hi, how’s your day been?’ (R5F)

Conversely, some participants appeared to consider that the staff were now part of their circle of significant people:

The staff here are out of this world. [Name] is just beautiful, she really is. [Name] and all the head staff are beautiful. The Filipina girls are lovely too. They are. You can have a lot of laughs with them, and we do. We have dances. We have all sorts of things in here. (R7F)

Staff participants typically spoke of seeing themselves as part of the network of residents’ lives; that care was much more that attention to physical care:

Well I think it is part of our role [fostering connections] given that they have come into care and intimacy is part of the care. You are having the whole person come in so you should be catering to all their needs, not just showering, getting dressed, the intimacy and the touch thing is part of who they are as well. (S5F)

The above quotes illustrate that residents, staff and family members were cognisant that residents’ quality of life was enhanced through the willingness of staff to be emotionally close with residents.

Loneliness and disrupted intimacy

Most facilities did not signal to residents, staff and family members that intimacy and sexual expression were permissible. When asked about sexual expression, residents queried whether such activity would even be allowed; they expressed anxiety about overstepping an invisible institutional line. At times, loneliness resulted when families disrupted a new relationship, even when the resident was not cognitively impaired. A resident described how the daughter of her new male friend had disrupted the relationship:

I have got a rather nice relationship with one of the boys [residents]. Unfortunately, the daughter is against her father having a relationship; he is lovely. I told her she [daughter] has spoilt her dad’s enjoyment. We had something going for us which was good. It is shame she won’t see the nice side of me and I told her there is one. She has hurt me. (R14F)

A staff member told of the distress for staff when a couple in a newly formed relationship were separated by staff at the demand of family members:

They were both fully for each other, and then the families told us to stop it. We did it. We stopped it. Then he passed away about a week later after we stopped it, then she passed away two days after him. It was just stupid. We didn’t know what to do, because we knew that we were taking away their reason for living. (S17F)

The above quote illustrates of how the residential context can exacerbate loneliness. It also highlights the vulnerability of older adults, even when they are cognitively competent. Data indicated family members are influential in residents’ intimate lives. Without policies and education staff may fail to advocate for residents and instead focus on appeasing relatives.

A staff member spoke of how an institutional mind-set obstructs opportunities for meaningful relationships, particularly if they (may) involve sexual intimacy:

I think if it’s a friendship, or if it’s a family member then it’s fine, we’re very embracing, but if there’s any kind of hint that it could be some sort of other relationship, I think institutions become very closed to any other sorts of relationships outside family. (S6F)

The above quote illustrates how social dignity is violated when older adults are no longer recognised as having the same need for intimacy and connection as younger adults. There were examples throughout the dataset of where social dignity was upheld and residents were recognised by others as people with a capacity to connect intimately and sexually:

I’d be gutted if [Name]’s family said no, and they took her away, because dad would just lose the plot. That would be like losing his wife all over again. To lose another person he’s fallen in love with, to have them taken away from him, it would be just tragic. (F7F)

A sister described the isolation for her gay brother who was living in a Catholic care home and had not come out:

I don’t know how you could [have an intimate relationship] in a place like that. His being gay would maybe be a problem for him; it’s not a problem for me. Maybe the home, I don’t know what their attitude would be. I don’t know whether they know he’s gay or not. Maybe they don’t. He’s had a wife. He’s got children, so he doesn’t present as a gay man.

The above quote illustrates one of the problems when genuine assessment of social arrangements, including sexuality and identity, is not part of the admission process. The sister was waiting for the right moment to raise with staff what she thought was likely to be a difficult topic, rather than staff normalising the centrality of this information.

Loneliness and liminality

Across the dataset it was clear that residents, staff and family members had degrees of awareness, in effect, that residential care is something of a liminal space; a threshold of sorts where residents were betwixt and between, living in a place not entirely a home, yet their usually permanent home that was also a workplace. This liminality had implications for expressions of intimacy and sexuality:

We try and make it a home atmosphere for them too; they’re not coming into a facility, they’re coming into their dad’s home, their mum’s home. We’re still task focused. We can’t get enough staff to move away from the task focus, and more on person-centric care. We rely quite heavily on families to take up the slack I suppose a little bit for us. (S14F)

Others clearly identified the facility as a workplace. One staff manager described an ambivalent position; expressing ageist perceptions about older adults’ sexuality that undermine social dignity:

The thought of looking at some of these people [residents] and thinking of them engaging in any sort of sexual relationship 65 above, I just think is yuk. I just think the whole thing’s yuk, but I work very hard at not letting that influence my care or my relationships with anybody, because I know that people are sexual beings and that they’re out there having sex; just because it’s revolting to me, doesn’t mean that it’s revolting to everybody else. I mean, we’ll joke in the nurses station about how in the old days the nun would hit it [a man’s erection] with a ruler, and we’ll joke about that, and what happens inside the nurses’ station stays in the nurses’ station, but certainly out there I encourage the staff to be a little bit more open-minded and tolerant in their views. (SF7)

The staff member above did not appear to be aware that her role-modelling in the nurses’ station might impair her call for tolerance.

Loneliness and the built environment

The built environment inhibited social connections. One resident, who became widowed after the move to residential care, described the losses involved in the transition to residential care. For the resident, loss of the artefacts of his life as well as social loneliness accentuated the sense of dislocation. The sense of ‘requiring permission’ permeated residents’ interviews and added to residents’ perceptions that their world was reduced and beyond their control:

You’re allowed to put your own things on the wall, which is important. There’s not much space for anymore. I used to have a library of books, but I had to get rid of those when we went into [facility]. We had the equivalent of a three-bedroom house and a garage and so on, but that had to all disappear. So, I have none of my books. I do have colleagues that still come, but there’s only a few of them. You soon drop out of circulation. (R4M)

A staff member also described the part that staff, and the limitations of the built environment played in undermining intimacy:

If a relationship develops between residents within the rest home, of a non-platonic nature, or if one’s come in and the spouse is outside, or it’s a partner is outside; I still think we’re quite obstructive, because we don’t have the places for them to go. Their rooms are small, and I’ve just found that my colleagues’ attitudes around relationships is that there’s a cut-off age, and that’s usually probably 65, and then after 65, whether it be handholding, kissing, or anything; just should stop. (S7F)

The above quote illustrates the interplay of attitudes and architectural limitations that create conditions that invite loneliness. A widow spoke of the grief of being separated from her resident husband as he lay dying, as she could not fit on the bed beside him. Due to her own health problems she was unable to sit until he died:

If it had been possible and I could have crawled onto the bed and lay beside him, so that my legs weren’t hurting, I could have stayed there right till the end, and I would have. (F1F)

Residents and family members were often acutely aware of how the built environment impeded intimacy and privacy. A daughter (F7 F) spoke of the impossibility of her father attempting to commence a new relationship:

In dad’s situation, no [intimacy is not possible], because he’s in a single room where he has a single bed and he opens straight out onto a corridor. The nurses just knock and basically go straight in, so they would have to have a system. Obviously, he can’t lock his door, because if something happens, they can’t get into it. (F7F)

The limited physical space in residents’ rooms also reduced a sense of being able to do what one would do at home. The same family member above (F7 F) recounted the difficulties for her father in attempting to be physically close to the resident he had re-partnered with:

When they’re watching TV together, the room’s so small. Dad’s only got one chair, so [partner] sits on the chair and he lies on the bed and watches TV, so they’re not even sitting close to each other to do that much. (F7F)

Another family member spoke at length about the disrupted intimacy for her and her resident husband due to lack of privacy combined with restrictive furnishings:

Unfortunately, rest homes that are not set up for that [partnered intimacy], there is very little chance for couples to enjoy any sort of sexual relationship. Even holding hands is sort of sniggered at by everybody in the room. Most of the rooms have got single chairs with arm rests in between and you can’t sit close. (F1F)

Both residents and family members spoke of the discomfort of having an audience to expressions of intimacy, giving rise to feelings of a loss of control. Communal living creates the enforced illusion of intimacy and relationships that may not reflect individual residents’ preferences about meaningful relationships, thereby increasing feelings of isolation.

Discussion

The purpose of this article was to consider how the loss of intimacy and sexuality in residents’ lives contributes to iatrogenic loneliness experienced in residential care, and the importance of considering these issues together. The dataset shows the relationship between loneliness and loss of intimacy and the pivotal role of staff and family members in enhancing or diminishing residents’ social dignity and wellbeing by (not) recognising these issues as significant. Illustrated in the data are the contributing factors of functional and paternalistic relationships with some staff and relatives, the uncritical justification of hyper-surveillance, the indeterminate space (neither hospital nor home) that is residential care, and a built environment that commonly signals the expectation of a solitary life where intimacy is supplanted by recreational distraction.

Our argument is that expressions of intimacy and sexuality are fundamental to personhood. Residents’ social dignity is compromised when these aspects of life are marginalised through an uncritical risk-averse climate and through treating frail older adults as if they are socially dead.^14,15,17 We consider that a philosophical orientation role-modelled by facility leaders that upholds a salutogenic approach – one that foregrounds wellbeing rather than pathology – is needed to overcome residents’ loneliness caused by obstacles to expressions of intimacy and sexuality.^14,22 The discussion focuses on the key themes that were identified in the data analysis and the wider literature to support these arguments.

The data highlight that to move to residential care does not necessarily solve the problem of loneliness and create opportunities for intimacy and sexual expression.^{5

–8,16,25} The move unhitches people from the intimacy of neighbourhoods, friends, and partners. We agree with Theurer et al.,¹⁶ that diversional entertainment activities do not remediate loneliness if people do not find the events connect them to a sense of continuity of self that is shared with others. We concur with Brannelly²² that residents must be engaged with as people who are socially alive. This recognition is the beginning point for ensuring that residents experience themselves as recognised by others as persons with rights, including sexual and intimacy rights, and are treated accordingly.^15,26 We concur with the World Health Organization’s²⁷ affirmation of a rights-based approach to adult sexual expression. This approach means recognising and addressing the preparatory work that needs to be undertaken in facilities to ensure that gender and sexually diverse elders are safe to express intimacy and sexuality and are not driven back ‘into the closet’.^13,28 It is only when residents are viewed as whole, socially alive persons that residential care staff can ameliorate loneliness, support intimate and sexual lives, and encourage better health outcomes for residents.

From these foundations of recognising older adults as persons, the implementation of intimacy and sexuality policies has been shown to be effective.^13,10 Without policy and education to guide practice, residents’ expressions of intimacy and sexuality may be responded to (or more likely reacted to) on a case-by-case basis, driven by staff and family members’ uncritical moral assessment or their own ‘moral compass’.²⁹ Policy development must be critiqued with an ethical lens to ensure policy does not diminish the likelihood of intimate and sexual relationships through excessive attention on possible risk.³ Residential care staff are trained to identify and mitigate risk in the interests of residents’ safety. However, when such a risk-management approach is weighted to the interests of facilities rather than residents, risk-averse decision-making may occur, including restrictive policies and over-consultation with family.¹⁷ Residents need to be and feel reasonably empowered to assert their rights to relationships,^30,31 and what we found was that most residents were anxious about crossing an unspoken and undefined institutional boundary around intimacy and sexuality. Our findings concur with other studies indicating that residents and family members were relieved in those instances where staff addressed intimacy and sexual expression rights explicitly.^32,33

The physical and ambient architectures of care are laden with moral value;³⁴ spaces signal to residents, staff and visitors whether they are in a homely or institutional setting; whether they have privacy or are under surveillance; and where power resides. Our data indicate that residents’ expressions of intimacy and sexuality require levels of privacy that may not be present in residential facilities. Notions of privacy are in part defined by facility policy and staff attitudes.^29,31 Our data also show that the ability to exercise the expression of intimacy and sexuality is also determined by architecture as well as policy and practice; residents inhabit unlockable rooms and public spaces under the panoptic gaze of caregivers.^30,31 Staff ambivalence about sexual and intimate expression is also due to the liminality of care homes; that they are both a place of care and a residence.¹¹ With the exception of a minority of facilities with innovative design features, traditional residential facilities have many of the signature features of hospitals that signal a functional workplace. Staff, family members and residents may downplay privacy breaches by justifying staff care-giving responsibilities. As shown in our data, such approaches contribute to a sense of liminality for residents: they inhabit neither home nor hospital; they are at risk of being deemed socially dead by others, with only contingent rights.²²

We noted across the dataset that too readily, staff, family members, and some residents problematised sexuality and intimacy expression in residential care as an unnecessary excess, rather than an integral part of an individual’s life, giving meaning and purpose. A salutogenic orientation contextualises relationships, intimacy, and sexuality as part of an overall approach which focusses on well-being, strengths, resilience, and quality of life of an individual.³¹ We propose that the primary purpose of residential facilities is supporting an individual to thrive, or as one of our participants put it, living their lives until they don’t.

Our data identified that staff, residents, and family members recognised the value of staff being willing to come into relationship with residents, to allow a type of intimacy to flourish through knowing and being known. Residents spoke of the detrimental impact when staff’s provision of functional care left them feeling dehumanised. Without intimate relationships that provide meaning, people become socially isolated, which is associated with depression and other negative health outcomes, including death.³² By contrast, a salutogenic approach to intimacy and sexuality emphasises residents’ wellbeing, and is reflected through policy, leadership, care practices, and the built environment.

Although this was a large national study, the study has limitations. Initially, we planned to randomise selection of the sites. However, recruitment challenges required us to modify this strategy as many facility mangers declined the participation request. We are mindful that many people are not confident to speak openly about intimacy and sexuality and therefore we will not have captured the breadth of views on these issues.

Conclusion

This study highlights that the communal context of residential care does not alleviate loneliness. To address loneliness in residential care, the fundamental significance of intimacy and sexual expression needs to be acknowledged in policy and practice, with education for staff, residents, and family members. It is vital that facilities have an overarching philosophy where residents are related to as socially alive people. Without such a philosophy, care and policy initiatives may be overly risk averse. Policies pertaining to intimacy and sexual expression should be treated as routine documents, discussed with all potential residents and family members at initial transition and intermittently through the time spent living in residential care so that all parties are in no doubt about residents’ rights, and the balance of a duty of care and empowerment. Staff in leadership roles can support families by preparing them for the possibility of sexual expression and its’ importance, so that these occurrences are not treated as extraordinary and problematic. Effective policy implementation is reliant on leadership guidance and education for staff, residents, and families. It is only when residents are viewed as whole, socially alive persons that residential care staff can ameliorate loneliness, support intimate lives, and encourage better health outcomes for residents.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Royal Society Te Apärangi Marsden Fund/Te Pütea Rangahau aMarsden, grant number MAU 1723.

ORCID iD

Catherine Cook

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