Still here,still queer? Queer lives and subjectivities in dementia care

Abstract

This article explores possibilities for the emergence of queer lives and queer subjectivities in dementia care, the meaning of being queer for people living in residential dementia care and how they relate to queer subjectivity. Our study, drawing on qualitative interviews with four people living in dementia care homes, show how being queer was associated with earlier phases of one’s life course and youthful, sexually active bodies. The dementia care home was described as a depersonalized, desexualized and segregated spatial condition where queer subjectivities could not emerge. However, although participants rarely became recognizable and intelligible as queer in the care context their positionalities must be understood in more complex terms than visible/invisible. Instead people in dementia care sometimes engaged in queer opacity as a tactic to refuse visibility in a care context characterized by surveillance and lack of control and agency.

I’ve kept a lot to myself. I haven’t been running around “tattling in the village”, or however you say it. No, I’ve tried not to burden anyone or expose anyone who’s told me something in confidence. I haven’t. […] So, you’ve got some of that, wanting to be a bit incognito. (Margareta)

It’s not easy to find Margareta. First, you have to walk across a cemetery. Her building is on the outskirts of the city, on the border between a residential area and a cemetery, between the living and the dead. Locating the right floor, taking the elevator, ringing the doorbell, a nurse opens the door to a buzzing sound. Entering a maze of corridors, with their apricot-colored walls and patterned armchairs, she is not in her room. She is finally found in the common room drinking a cup of coffee. She is 79 years old, she forgets things (her zimmer frame, the people in the photos on her windowsill, that her parents have died), and she lives in a care home. She had a lot of fun in her life, but also sorrow. She cared for her parents as they became ill. She keeps saying that she does not want to complain. She’s a lesbian, “something I carry with honor” she says. But she also says she wants to keep some things to herself, to be “a bit incognito”.

This article focuses on queer lives and subjectivities in dementia care and how to understand notions of the visibility or invisibility of queer people who are living with memory illnesses, commonly referred to as dementia. This article is about people like Margareta who are still here, despite persistent ideas of dementia as depriving people of subjectivity in general and sexual and gendered subjectivity specifically (King and Hall, 2023; Sandberg, 2018). Our aim is to explore, through the articulations of the participants in our interview study, how queer lives and queer subjectivities become possible and may (or may not) emerge in a dementia care context. Thus we understand the dementia care context and dementia illnesses as the discursive and material conditions through which subjectivities and lives may (not) unfold and become (un)recognizable. The two questions that have guided our discussion in this article are:

• How does dementia care condition how queer lives and queer subjectivities may emerge?

• What is the meaning of being queer for people living in residential dementia care and how to they relate to queer subjectivity?

As suggested by Vidal (2009), we are living in a “neuroculture” where brains are understood more than ever as the very locus of our selves. This positions people with various form of cognitive difference as Other. The participants in our study, who are forgetting, who are disorientated in time and space, who have difficulties performing everyday tasks and are dependent on daily care, are rarely the focus of queer studies. Historically, people with dementia illnesses have also been deemed incoherent, confused and unable to narrate their perspectives and thus excluded from participation in research (Proctor, 2001). We argue, however, that starting from the positionalities of people who are on the very margins of what Butler (2009) terms “recognizability”, is of great significance to understand (the instability, the messiness and fragmentation of) subjectivities and sexualities, and how ageism and cognonormativity (a term we will introduce in the next section), intersect in the shaping of queer subjectivities.

Currently there is a very small quantity of empirical literature that explores the lived experiences of dementia among lgbtq people, their significant others and informal caregivers (Anderson et al., 2021; Barrett et al., 2015; Dykewomon, 2018; Mc Parland and Camic, 2018; Price, 2010; Silverman and Baril, 2023) The studies that have been published point to experiences of widespread fear: fear of discrimination in care and social services; fear of accidently “outing” oneself in unsafe contexts; and fear of losing social support and networks as a memory illness progresses. Existing research also emphasizes the significance of close relationships for support.

However, few of these studies address the experience of receiving formal care. Thus, in this article, we focus specifically on the experiences of four participants who live in residential dementia care. While living with so called dementia illnesses constitutes a form of otherness, living in residential dementia care also involves particular forms of dependency and vulnerability. The care home constitutes the very framings of being and becoming. This includes the material physical environment, other residents, as well as care staff. Although otherness is a general condition for all residents in dementia care, the documented heteronormativity of eldercare and dementia care means that queer lives, in the past and present, are positioned even farther outside what Butler (2009:6) refers to as “schemas of intelligibility” (Butler, 2017, 2018; Leyerzapf et al., 2018; Hoekstra-Pijpers, 2022; Rainbow Project and Age Northern Ireland, 2011; Siverskog, 2023). Consequently this particular unintelligibility impacts on how queer subjectivities may emerge in dementia care.

Queering dementia

In this article we have been inspired by and drawn on insights from the emergent field of Critical Dementia Studies, a theoretically diverse field that seeks to interrogate and deconstruct dementia in a process similar to the way that critical disability scholars and crip theorists have approached illness and disability beyond both biomedical and liberal-humanist paradigms (Sandberg and Ward, 2023).

Queer theory has been a productive interlocutor in Critical Dementia Studies. It provides challenges, not only to subjectivity and sexuality, but also to the dominant framings of dementia as a disease category (King, 2023; Sandberg and Ward, 2023). This implies going beyond homosexuality and dementia as clearly demarcated objects of knowledge and instead highlighting how sexuality as well as cognitive function are “grids” or “schemas of intelligibility”, to use Butler’s terms (1990, 2009). This implies that gender and sexuality, but also cognition and cognitive capacity, are the framings through which we may emerge and become recognized as subjects (Sandberg, 2021). We thus understand heteronormativity as well as cognonormativity as the framings through which any subject may become visible and known (King, 2016, 2023). That dementia has commonly been associated with a “loss of self” due to neuro-pathological brain damages can in other words be understood as a reflection of cognonormativity, that subjectivity is bound to the brain and its functioning in particular ways.

Moreover, a queer approach allows subjectivity to be seen through a different lens than most of the existing scholarship on dementia. The biomedical approach to dementia, as noted above, confines subjectivity to cognitive function and thus contributes to a pervasive discourse of dementia as a deterioration of subjectivity. In contrast, more liberal-humanist approaches, such as the personhood approaches influenced by the work of Tom Kitwood (1997), have sought to underscore how subjectivity/selves/personhood may be sustained through social interaction. Although this latter approach is benevolent in its attempts to challenge the stigmatizing discourse of the loss of self, it risks reinforcing a compulsory biographical continuity and presumes subjectivities as pre-existing, stable and coherent (King and Hall, 2023; Sandberg, 2018; Silverman and Baril, 2021). A queer theoretical perspective, on the other hand, understands subjectivities as always non-essential, unstable and fragmented. This aligns well with how the participants in our study effectively queered subjectivity, both challenging fixed lesbian, gay and bisexual identities and troubling the binaries of visibility and invisibility.

In a hegemonic liberal-humanist lgbtq discourse, being out and visible is often connected to pride and performing a successful gay, lesbian or trans subject. Not disclosing one’s sexuality is thus, in contrast, regarded as being closeted, invisible and failing to acknowledge who one really is (De Villiers, 2012; Sedgwick, 1994). As we seek to show in this article, the positionalities of people living in residential dementia care further challenge these hegemonic discourses of disclosure and visibility. We are far from the first to point out that the binaries of visible/invisible and open/closeted do not to hold. However, what is less frequently discussed is how these hegemonic discourses also presuppose an independent, agentic and cognitively able subject, who lives a life where a private/public distinction can be upheld and where one may choose to tell or stay silent/invisible. The positionalities of people with dementia living care homes point to the immediate limitations of these discourses, as we will show in the course of our argument.

Participants, methodology and ethics

The interviews that are used in this article are part of a larger project which explores intersections of lgbtq and dementia in Swedish dementia care through policy analysis and interviews with care staff, people with dementia and significant others. In this article, we will focus on the participants who lived in care homes, including an interview with a sister to one of these participants.

The four participants, who we call Margareta, Bob, Erik and Nils, were born between 1937 and 1949, and were at the time of their interview between 73 and 85 years old. All of them had been in same-sex intimate and sexual relationships throughout their lives. However, at the time of the interview none of the four were in a couple relationship. We recognize that our use of the term “queer” in this article is not a word the participants would necessarily identify with, as it has only recently come into use in Sweden and amongst mostly younger generations. Our use of the term, however, reflects our epistemological position regarding the fluidity and instability of sexual subjectivity, an outlook which complements very well the way the participants spoke of and understood themselves.

The length of time the participants had lived in a care home varied between one and five years. There was also variation in terms of how they experienced their everyday life. Bob reiterated his appreciation for the peace and quiet in the care home, where “not much happens” and he was able to get the practical help he needed. Erik, in contrast, expressed a clear discontent with his life. In stark contrast to the vibrant life he used to live as an actor, which involved drinking and parties, his life now he described as dull and boring. He stated in the interview that he had no desire to live any longer.

Although we sometimes in this article talk about dementia as an illness, our primary interest does not lie in the medical diagnosis per se but in the experience of memory illness and being in dementia care. Notably, none of the participants could account for a specific dementia diagnosis (that they were aware of), but all of them had, to different extents, difficulties with memory, orientation and/or expressing themselves. However, how they experienced their health and the way their memory illnesses shaped their everyday lives varied significantly. Margareta, who we heard from earlier, was able to remember her youth and her family with clarity while having a harder time remembering the present. She did not know where she was, how long she had been there or why she was there. After she was interviewed by Anna Siverskog (author two) and the two of them left the shared dining area she did not remember where her room was even when standing just outside her door. Her ability to remember also shifted during the interview, where she, for example, talked about her parents being dead, but later referred to them as still alive. In contrast, Erik did not find his memory was his primary challenge in everyday life. Instead, he spoke of difficulties he had expressing himself and performing tasks such as using his phone or computer. Repeating statements or stories, conceptualized in dementia research as “looping”, was also a behavior that appeared in the interviews, in particular with Bob and Margareta. Nils was interviewed together with his nephew, as his physical abilities as well as his ability to communicate had declined rapidly so that, when the time came for his scheduled interview, he was in bed day and night. His previously strong body that, during his life, had carried plates, trays with glasses and served guests at top-end restaurants, was now only able to lie down. He had almost lost his ability to speak and was able to express himself only with great difficulty, sometimes in Swedish, sometimes in English. Nils passed away during the course of this study.

Margareta, Bob, Erik and Nils were recruited through our already established network in the lgbtq community in Sweden. Anna Siverskog, who conducted the interviews discussed in this article, had met two of the participants before, as well as two of the significant others who participated in other interviews. We believe this acquaintance, along with some level of trust, might have been vital for us to be able to conduct these interviews. Trust and familiarity were, for example, reflected in the interview with Margareta, who remembered Anna from a previous meeting primarily through her astrological sign and said to her: “If I can help you with anything, I’ll gladly do so. I trust you.” That said, it is also necessary to acknowledge that the stories told in the interviews were possibly shaped by the participants’ assessment of the risks associated with disclosure and their desire to come across as respectable, accommodating and helpful. The lack of privacy in the care home could also have had an impact on the ways the stories were told. Three of the interviews were conducted in the interviewee’s private room, but staff were often present nearby and one entered the room during an interview. One interview, that with Erik, was conducted in a space shared with other residents.

The participants were encouraged, if they wanted, to bring someone to the interview for support. Bob and Erik each brought a friend and Nils had his nephew present. These co-participants engaged in interview discussions, helped the participants to remember and were, as such, co-producers of the stories we heard. In the case of Nils, who spoke very little, it was his nephew who was the primary narrator of his experiences, along with his sister, who we call Tina, who was interviewed separately. The interviews discussed in this article are therefore polyvocal; they are the result of several voices, not just that of a single individual.

Moreover, the interview material is characterized, to various extents, by forgetfulness, difficulties of expression and incoherence. This could perhaps be seen as inadequate if we held a positivist desire for truthful and coherent accounts. However, from our queer epistemological position, we regard narratives – as well as subjectivities – as always incomplete, incoherent and open to constant resignifications. This implies that we see the articulations of our participants’ selves and lives as part of these constant negotiations and resignifications of subjectivity, not only as a result of their cognitive illnesses (c.f. Ward and Sandberg, 2023). That the participants in our study made sense of themselves in (for us) sometimes confusing, playful or erratic ways is thus to be understood as at times a conscious strategy and at others the result of cognitive challenges. We have embraced uncertainty, not knowing and the loss of confidence, as Lather (2007) has suggested, and seen this position as a methodological strength. We have striven to use our transparency in this respect as a strategy in our analysis.

Indeed, doing research with people with memory illness in an institutional environment creates specific ethical and methodological considerations. This includes consent-seeking from people with memory loss. We chose to adopt what is called “process consent”, where participants were informed and asked for their consent several times (Dewing, 2007). As previous research has shown (Smith et al., 2022), living with dementia as a queer person may also constitute a particular form of vulnerability. We were, for example, careful that our actions did not, inadvertently or otherwise, ‘out’ participants. Before and during interviews the care staff who answered the phone or let Anna in often asked who she was and what her relation was to the person she was visiting. These may have been innocent questions, seeking to protect the resident in the care home from suspicious strangers. However, Anna could not be specific about the research she was doing without the risk of outing the person she was meeting. In a similar vein, she was careful not to leave the information sheet about the project in a visible place when she left.

Finally, our study raises questions about ethics and epistemology in a wider sense. We have written this article with a certain kind of unease. This unease stems from our understanding of social science as far from innocent and not necessarily benevolent to subjects on the margins (Tuck and Yang, 2014). We are, for example, wary of how queer subjects are always expected to “give an account of themselves” or to make themselves known through verbal expression, a form of social exchange which is particularly accentuated in interview studies. We are also cognizant of the risk that people with dementia can become “specimens” for investigation. Although our outset is deconstructive queer epistemology, we found that throughout the setup of the project we still interpellated the participants as “lgbtq” and “living with dementia” as discrete objects of knowledge rather than positionalities from which it is possible to know and speak. When Anna Siverskog conducted the interviews, she found herself at several points almost unwittingly employing a hegemonic liberal and identity-based discourse when asking the interviewees about their sexual identity and whether or not they were “out” to staff.. The interviews we discuss in this article must be understood as produced in this context and where the refusal to “be that name” can be seen, at least in part, as a form of resistance to being subjugated in/through social science.

“I’m nothing – this is a care home”

In the first section of our analysis, we focus on the dementia care context and how it conditions and makes queer subjectivity (im)possible. To do so we need, firstly, to zoom out and explore how participants experienced the care home as the context where they spend their lives. The word “home” in “care home” is perhaps a misnomer if we turn to Erik’s experience. The care home to him is the place where he “resides”, not where he “lives”. He makes this distinction to point out the deprivation that he feels in the care context. He says that in this dull environment, “drinking is my only comfort”. When Anna asks if he would rather live in another care home, he responds “care home schmare home, it’s all the same – God, I’d like to have my life back”.

The loss of enjoyment that Erik articulates is linked, not only to a lack of meaningful activities, but also to a loss of social relationships, an experience which has been documented in the literature that describes care homes as environments of incarceration and segregation (Steele et al., 2023). “All the damn people are dead,” Erik cries. His friend Sonja, who also lives in the care home and who also participates in most parts the interview, is the only one he has left. Neither Erik, Margareta, nor Bob experience their relationships with other residents as meaningful or desired. Margareta says she “never longs to go down there”, speaking of the floor where joint activities are arranged for the residents in the care home. Bob, in turn, says with a laugh: “well they’re a bunch of deadheads” about the other residents and that he has very little contact with most of them.

While it is not considered possible to interact socially with the other residents, neither do conversations or social interactions with staff seem to figure prominently in the daily lives of the interviewees. Care seems to be performed in an “assembly line production” mode which involves little space for the individual or person to emerge (Twigg, 2010). Erik describes the impersonal relationship with care staff by saying:

I get help. That’s literally what I get and I’m grateful for that. But besides that, there’s just nothing personal about it. Impersonal as hell. Everyone’s walking around here, doing their job. Entering, delivering and... But there’s no feeling behind any of it. Everything’s really impersonal…

These experiences of impersonal care, of the loss of friendships and social interaction in a dementia care context where the opportunity to thrive seems limited are not specific to queers. We argue, however, that these experiences of “loss of life” and depersonalized care are intertwined with a process of desexualization as people age, in particular when living with a memory illness in a care home (Sandberg, 2018; Simpson et al., 2021). This desexualization, in turn, has particular consequences for how queer subjectivity may emerge, something which is most visible in the interview with Bob. When Anna early on in the interview asks if he identifies as gay, Bob responds:

No, not now. Not as anything really. I’m nothing. […] I don’t have a sexual life anyway, so it’s not, no, maybe earlier in life you did it a bit more, but not today. […] This is a care home.

For Bob, being gay is closely intertwined with sexual practice. When sex is no longer part of his life he identifies himself as “nothing”. But it is also clear that this experience of no longer feeling like a sexual subject and thus no longer being able or willing to identify as homosexual is also linked to the care home as a spatial condition. As he says, “this is a care home.” His embodied queer sexual subjectivity is thus not materializing within the walls of the care home. Moreover, the care home context is inseparable from (discourses as well as materialities concerning) old age, something we will discuss more in the next section.

The desexualisation of the care home is not only reflected in the experienced impossibility of sexual and intimate relationships but also from the lack of material traces of queer lives and expressions. The importance of queer symbols in the domestic space such as art, photos, books, and rainbow flags is often emphasized in relation to older queer people, not least since the domestic space often has been one of few queer sites in a heteronormative world (Hoekstra-Pijpers, 2022; Pilkey, 2014; Siverskog, 2023). In the dementia care context in which the participants lived, however, queer objects were, often absent or only barely noticeable. In the interview with Bob, his friend Åke talks about his memory of some paintings Bob had done with “a lot of naked beautiful men (…) heavy hard-ons on some of them.” While Bob’s room is covered with the colorful paintings he did during his life, none of the naked men are on display.

The matter of gay male nude art reappears in the interview with Tina when she talks about her brother Nils. She says that, before moving to the care home, he had a “portrait of himself, painted when he was totally nude” on his wall. When Nils moved to the care home, Tina decided not to bring that portrait. She then speaks about another picture that Nils had in the care home that portrayed male nudity. However, one day when their family came to visit “it appeared as if [the care home staff] had moved the picture. As … if it was inappropriate in some way.” The male nudity on display in Nils’ private home had been hidden, the whole picture moved by staff in order to cover up the part they considered inappropriate. The family then decided to remove the artwork to replace it with another painting.

Thus, for both Bob and Nils, an experience of the removal of inappropriate gay male nude art emerges, in the past as well as in the present. Articulating one’s self when living with dementia may very well happen through the display of queer objects rather than the verbal acts associated with “coming out”. However, these examples show how the material traces of gay male desire that were expressed in the paintings that Bob and Nils had in their possession were, in both cases, somehow seen as not fitting in the dementia care context.

Queer sexual bodies, queer intimacies – of the past

When asked about their experience of themselves as queer today when living in a dementia care home, the interviewees consistently refer to being queer as something in the past, both in terms of practice and identification. In the same way as Bob labels himself “nothing” now that he is no longer sexually active and living in a care home, Erik also seems to evade queer identification, both because of an experienced “loss of life” in the care home and a loss of potency, as seen in the following exchange:

Anna [interviewer]: How do you identify, bi – or homo or?

Erik: Blind or honey?

Anna [interviewer]: Bisexual or homosexual?

Sonja [friend]: He doesn’t have sex.

Anna [interviewer]: No, no, but you could still – it might be important to you as an identity.

Erik: How things are nowadays? Straight to hell!

Erik responds in a playful, almost poetic way, to Anna’s question. Perhaps he does not hear the question or understand it. Maybe he is simply making a joke. When he does not respond straightforwardly to the question, his friend Sonja “scaffolds” and answers the question by saying, “he doesn’t have sex”, thus making sexual identification a matter of sexual practice. At the end of this exchange, Erik refers to the present as “straight to hell”, an expression which we interpret as the discontent he feels about his situation at large and his life in the care home. Erik goes on to describe his experience of how “there is nothing to live for anymore” and that his queer life is “in the past” since he “no longer has potency”. In addition, he describes how he can no longer get technologies such as his phone and computer to work, technologies which helped him in the past stay in contact with a gay community.

Both Bob and Erik thus seem to understand queer not as a matter of identification but rather a matter of sexual practice, practices that are no longer available to them (and in the case of Bob not desired). Erik also explicitly raises the materiality of his ageing male body which can no longer get an erection as a physical change that orients him away from, or locates him outside, queer embodiment and queer subjectivity.

The articulation of being queer as an identity that is now “in the past” not only indicates that the participants see that part of themselves as “over”. It also reveals that being queer is something associated with the younger parts of the life course. Margareta, in contrast to Bob and Erik, does not specifically relate her queer subjectivity to sexual practices and she also more readily declares herself a lesbian when asked about it in the interview. Still, she does not seem to find it important for people to know her as a lesbian in the dementia care context since, for her, her lesbian life and subjectivity is primarily linked to an earlier phase of her life course. When asked about whether she thinks there are any experiences that are specific to lesbians and gay people living with dementia, she responds:

I mean, I’m old, literally old. I’m not out and about anymore. I might see a friend occasionally but nothing’s really that important to me anymore. Things were different when I was young and wanted to go dancing and all that. That was fun. But today I don’t give a damn. And people can talk, if they like, so what.

In this quotation Margareta articulates how her lesbian life and identity was more accentuated at a time when she was “out and about”, socializing in lesbian communities and contexts. Today, when she positions herself as an old person (living in a care home), her lesbian identity becomes less significant and less relevant to make known to others. A similar sentiment is expressed by Bob when asked whether it is important to be open in the care home:

No, no. Not when you’re 72, it’s different when you’re younger […] it’s younger people living that life.

Being queer thus emerges as both a temporal and spatial position, located in a youthful part of the life course and in spaces outside of the dementia care home. Living in residential dementia care not only involves segregation from the productive cogno- and chrononormative worlds outside of the care home. For Bob, Margareta, Nils and Erik it also means being segregated from queer communities, relationships and contexts. A number of studies have shown that old queer people often experience exclusion and marginalization in youth-normative queer contexts (Jones and Pugh, 2005; Kristiansen, 2013; Siverskog and Bromseth, 2019) This is something Bob also points to when Anna asks him why he feels it is no longer possible to be sexually active when you are old.

Bob: Nobody wants you. [his friend Åke laughs] That’s the way it is. It’s not easy to find a partner.

Anna [interviewer]: So that’s the issue?

Bob: Yes, you’re supposed to be young, you’re supposed to be beautiful, preferably with a nice job and a fortune.

Åke: Yes that’s right, that’s the way it is.

As an old man with memory challenges and living in a care institution Bob is thus segregated in several respects. Clearly the ageist and ableist segregation and desexualisation of old age has had an impact on Bob’s sexual subjectivity and sense of belonging in a queer community in significant ways. When asked whether he would like to reconnect with the queer community and contexts that he used to be part of he responds:

No, I don’t feel that need. I mean I’m too old and if I ran around having sex, I’d be ashamed [laughs].

Pervasive ageist norms function to position old people as asexual or sexuality in later life as inappropriate. However, the shame that Bob articulates in relation to being sexually active may also be understood as particular form of shame related to the stereotype of the “pathetic old homosexual”, the old gay man prowling for young flesh (Goltz, 2010; Kristiansen, 2013). It may also be interpreted as a way to construct oneself within a frame of respectability. So, while the care home is a place which desexualizes and segregates residents such as Erik, Nils, Margareta and Bob, from queer contexts and previous networks, Bob’s remark that it would be shameful to seek sexual encounters also points to the fact that, even as a person with a cognitive illness, it is still possible to be highly conscious of ageist norms related to sexual activity.

As seen so far, our participants situate themselves in very ambiguous ways in relation to being queer. Our study shows, similarly to the work that Traies (2016: 46) has done on older lesbians, that being queer is understood as a social and sexual position that is challenged by withering social and sexual relationships. Rather than understanding the so-called dementia illnesses that our participants experience as causing a loss of subjectivity, we suggest that the dementia care home is understood as outside of the time and place inhabited by queer lives, bodies and practices. Regardless of their forgetfulness the participants seemed highly aware of heteronormative, ageist and ableist framings where sexual subjectivity in general and queer subjectivity more specifically are linked to youthful able bodies and minds and the young(er) parts of the life course.

“Nobody asks”: Queer invisibility – or opacity as queer tactics?

Although this article focuses specifically on dementia care, what we have discussed so far may in many ways reflect conditions for queer subjectivity in eldercare more generally. The participants in our study did not relate their sense of not really being queer anymore to forgetfulness, disorientation or other challenges associated with so-called dementia illnesses, but rather linked them to discourses of desexualized old age and the depersonalized and desexualized care home as a spatial condition. However, we suggest that living with dementia constituted a particular positionality which also impacted on one’s recognizability as queer. Being known as queer and having a queer life course recognized seemed to depend on verbal articulations, of coming out and speaking openly, which interviewees were sometimes not able to perform and sometimes not willing to do.

In the interview with Nils’ sister Tina, she reflects on the extent to which the staff know anything about her brother’s queer life. She begins by saying that “it’s hard to put your finger on it”, pointing to the uncertainty and ambiguity regarding how her brother is known in the care context. After some reflection she states that the staff probably really do know because when Nils entered the care home he was in better health and able to express himself more articulately:

I think that as long as Nils was in shape to, or could still follow, I’m definitely sure that he would have flagged it [being gay]. I am completely certain. Because it’s been a pride. Really proud.

In Tina’s reasoning, to emerge as queer in the care context seems to rely to a great extent on her brother’s ability to verbally articulate the words that will identify him in this way. Nils has, in the words of his sister, been “extremely open” in the past. As he progressively loses his speech, however, it becomes more uncertain and ambiguous to what extent he is recognizable to care staff as a gay man.

It is not only Nils whose queer life is ambiguously known and visible in the dementia care context, however. Bob says that no one has really asked him about it and that he does not really want anyone to do so either:

I can be a bit discreet […] it’s private, I don’t walk around asking people what they do… with their hands, I was about to say.

In the same way that Bob uses the word “discreet,” Margareta also speaks about wanting to be a bit “incognito”. Although she declares herself a lesbian “with honor,” she also says that she does not want to “tell her life story to everyone.” That Margareta is ambiguously known or visible as a lesbian is further reflected when she says that everybody at the care home is probably aware of her sexuality:

I think every old lady and old man living around here knows about it. So, I never make a fuss about it and neither do they. It’s common these days, I don’t think anyone cares. And if they did, so what? There’s not much about it these days that they can reproach. Because their relatives are probably ‘on their knees’ somewhere too… So they have to think about that. There’s nothing to make a fuss about.

Referring to being lesbian or gay as something “common”, in other words something normal, seems to imply that it does not warrant articulation. Margareta’s reflection that the other care home residents have a relative who is “probably ‘on their knees’” may be interpreted as a sexual reference and a cheeky way of saying that queers are in fact everywhere. But her desire for non-articulation also seems to allude to the conditions of her queer past, which preceded the new acceptable ideal of coming out. As Swedish sociologists Margareta Lindholm and Arne Nilsson (2005) have argued, many gays and lesbians lived in established relationships before the era of coming out emerged in Sweden in the 1970s. Rather than interpreting their silence as being altogether oppressed, Lindholm and Nilsson suggest that these silences allowed for queer practices and relationships to thrive. Margareta’s silence, desire for privacy, and her assumption that “they know” should not necessarily be understood as an expression of silence or oppression. Instead she seems to refuse to become visible/discernable in the care context. Being “incognito” and keeping her distance possibly allows for some “fooling around”, as Margareta suggestively remarks.

You need to keep your distance with certain people. And I think that’s a good thing for an independent person. Keeping to yourself and fooling around. Well, you know what I mean.

While we are not sure what Margareta means, her words have parallels to the arguments that DeVilliers (2012) makes on queer opacity as a tactic and strategy that implies a refusal to subjugate to a name, category or a discernable identity as gay or lesbian. It is possible to interpret Bob and Margareta’s strategies as re-entering the closet because of a fear of homophobia, as many ageing and dementia scholars have previously remarked (see, e.g., McParland and Camic, 2018). However, we suggest that it is also possible to simply regard Bob and Margareta’s desire to be “incognito” or “discreet” as a refusal to identify, and that the liminal space of the care home and dementia illness may allow for such acts of “slipping away” (cf. Ward and Price, 2016). Indeed, as suggested by Sundén (2023: 7) queer opacity, of not being visible and known, may enable a “place for intensity or desire to take shape and develop” –in Margareta’s words, the opportunity of “keeping to yourself and fooling around.”

Moreover, this kind of refusal to be known and visible may be particularly important in the care context where boundaries between private and public are ultimately blurred. The private home has been of particular importance for older queers as a queer space. The care home, in contrast, if defined as someone else’s workplace, is essentially public and thus a place of “intensified surveillance” (Willis et al., 2023). The formal long-term care context may thus, as has been argued by Kia (2016, 2019), result in a form of “hypervisibility” for older queer people. This implies that being known and labelled as “lgbtq” may function as part of a wider atmosphere of surveillance and control in the care environment, rather than as liberating. Although Kia does not specifically discuss dementia care, their observations are particularly salient in this case since non-heterosexual people with memory illnesses may often lack control and agency over a possible disclosure of their queer subjectivity which could risk outing themselves or their partners (Barrett et al., 2015). From this perspective, it appears that Margareta’s strategy of “keeping to herself”, of being discreet so that she can fool around on her own also allows for a certain agency and sense of control, behavior which is denied to her in most aspects of the dementia care environment. Keeping quiet or being invisible may then be a strategy of particular valence when everyday life operates within a care context is characterized by dependency and a significant loss of privacy.

Conclusions

In this article we have sought to explore how queer lives and queer subjectivities become (im)possible and may emerge – or not – in a dementia care context. We have also explored the meaning of being queer for people living in residential dementia care and how they relate to queer subjectivity.

A theoretical starting point for this paper has been that cognonormativity and heteronormativity function to make only some lives intelligible and recognizable (Butler, 1990, 2009; King, 2016, 2023). This framework challenges the currently pervasive discourse that dementia illnesses, whether the result of disease or brain damage, cause a “loss of the (queer) self.” Instead our focus has been on the dementia care home as a material and discursive condition of queer subjectivity. Our study shows how the possibilities for queer subjectivities to emerge is linked to a wider sense of “loss of life” in the care context. Our interviewees experienced the loss of friendships, meaningful social interactions and activities. The possibilities for subjectivities to unfold in a wider sense seemed limited.

In relation to queer subjectivity more specifically, the dementia care home was experienced as a space where sexual practices were unthinkable and in which queer material traces, such as nude male art, were missing (or taken away). Being queer was also linked to the earlier phases of one’s life course and to youthful, sexually active bodies. Being queer was thus both temporally and spatially linked elsewhere, in other times, with younger bodies, all outside the physical sphere of the care home. As such, our participants effectively queered subjectivity in their rejection of identity-based understandings of being queer. Instead, they located being queer in (past) sexual practices and relationships.

Dementia care, as discussed by Steele et al. (2023), is a spatial condition characterized by segregation and incarceration for everyone afflicted, not just for queers. However, if a queer subjectivity is linked to the proximity of other queers, as suggested by our participants, this condition of segregation has particularly strong consequences for people whose lives do not conform to the norms of gender and sexuality. Notably, existing research has focused on queer people with dementia who have a partner. The fact that the participants in our study were not in a relationship may have been a reason why they moved into residential dementia care. Their single status also seemed to have an impact on the extent to which they became intelligible and recognizable as queer. Although friends and family were, to varying extents, present as visitors, and thus were active in co-narrating, co-remembering and confirming queer subjectivities and lives, the interviewees seemed known only ambiguously as queer in the dementia care context.

Our study suggests that queer lives in dementia care need to be understood in more complex terms than simply visible/invisible or silent/articulated. While some people with so-called dementia may not be able to speak or articulate their queerness verbally, others may also engage in queer opacity as a tactic to refuse visibility in a milieu characterized by surveillance and lack of control and agency. This refusal to be known may, however, vary between different queers with dementia. In this article we have only discussed queer in terms of sexualities. For gender non-conforming and trans* people it may not always be possible to live under the radar, due to embodiment or the need for gender affirming medication (Silverman and Baril, 2023).

That queer opacity was a tactic that our participants used in some cases should not be understood as a carte blanche for dementia care providers to overlook sexuality and gender identity in care practice. Rather than focusing on articulations of identity, that people with dementia “come out” in the care context, an action that may in fact result in silencing, we argue that dementia care providers need to pay closer attention to ephemeral glimpses and traces of queer lives. This can be exemplified by a story from Tina about a “special” relationship that Nils had had with a young female carer in his care home. They looked at photos together because she had been to the same gay club that Nils had frequented when he was younger. Their shared experience of a queer space allowed for what Tina described as “a special relationship” to emerge, encouraging Nils to open up and “talk more.” Being queer in dementia care could thus be constituted through an occasional conversation about a night club, a painting of a beautiful nude male on the wall, or a photo on the windowsill of a person whose name you cannot remember anymore.