Subjectivity is a widely explored topic in dementia studies, in both the humanities and the social sciences. Persistent discourses of “a loss of self” in dementia have been challenged by scholars, who argue for the need for continued recognition of the person with dementia and that subjectivity in dementia may be sustained. So far, however, there is a lack of discussion about the significance of gender, and how being recognised as a subject overall is closely intertwined with being recognised as a gendered subject. This article explores how gender matters to the recognition of subjectivity in dementia. But it also explores how dementia as a position of cognitive otherness may impact upon and disrupt gender performativity. The discussion builds on narratives from an interview study on intimacy and sexual relationships among heterosexual couples living with Alzheimer’s disease, as well as the narrative of the Swedish autobiographical novel Minns du? [Do you remember?] (Beckman, 2019), in which the nonbinary transgender narrator Alice seeks to recollect the memories of their partner AnnaBelle, who is living with a memory-related illness. The article shows how reiterations of gender could be significant in sustaining subjectivity for a person with dementia. But it also shows how cultural tropes of persons with dementia as strange(rs), children or animals position them as unintelligible and thus as unrecognisable gendered subjects. The novel, in contrast, provides an alternative form of worldmaking in which intersubjective recognition is not dependent on either cognitive function or binary gender within a heterosexual matrix.
“He made me feel like a woman. I don’t feel that way anymore.” Anna, 55.
Anna was standing in the hallway, on her way out of the house, when it struck her: “I’m really in love with Anders, oh my god, like I’m a teenager.” At the time, Anna was forty years old, divorced and had no plans to fall in love. But she could not stop herself from falling for him, and they eventually became a couple. The years that followed were filled with passion and great sex but were also an emotional rollercoaster for Anna. They broke up and got back together several times: this is not an uncomplicated love affair. But now, things are starting to happen with Anders, he forgets where he parked his car, goes out to buy milk and returns empty-handed, time and again. After an incident when he disappears on a trip, they go for an examination at the local hospital and he is eventually diagnosed with Alzheimer’s disease. Anna’s husband’s illness does not only change him, but it also changes her, not least in terms of gendered subjectivity. She no longer recognises herself as the woman she used to be.
Anna is a participant in an interview study I conducted on sexual relationships and intimacy when living with Alzheimer’s disease. Her narrative underlines how dementia may cause fundamental challenges to subjectivity, not only for the person with the diagnosis but equally for those close to them (Burke, 2014). Subjectivity is a much-debated issue in relation to dementia illnesses. A pervasive feature of discourses on dementia is that of a “loss of self”, which equates changes in cognitive function with the diminishing of subjectivity as the illness progresses. This discourse is, however, being challenged by work within dementia scholarship and care practices which demonstrates and argues for the persistence or “survival” of subjectivity in dementia (Hydén et al., 2014; Folkmarsson et al., 2020). A key aspect of the latter approach, which is often referred to as a person-centred approach, is recognition, having one’s subjectivity continuously validated and recognised when living with memory loss and changing abilities (Burke, 2014).
However, what is largely missing from discussions about subjectivity in dementia is the significance of gender. Specifically: how is the overall recognition of subjectivity closely aligned with becoming intelligible as a gendered subject? As Anna’s interview narrative indicates, dementia may cause some ‘gender trouble’ for persons living with dementia, both as the person with the illness and as someone close to that person. Thus, this article explores and expands upon existing work that explores recognition and subjectivity in dementia by critically discussing gendered subjectivity and dementia. In this discussion, I engage with feminist theories of gender as performative and emerging from what feminist theorist Judith Butler (1990) has termed the “heterosexual matrix” in order to explore how people with dementia and their partners become recognisable or unrecognisable as gendered subjects. The article seeks to contribute to further discussions on how gender matters to the overall preservation or erosion of subjectivity in dementia. But it also aims to forge a discussion about how cultural narratives of dementia as an abject state beyond recognisability may impact gender performativity.
The article’s discussion draws on both narratives from a qualitative interview study with heterosexual couples living with dementia and a recently published auto-biographical novel Minns du? [Do you remember?] (2019) by Alice Staffan Beckman. The novel describes the transgender narrator Alice’s relationship with their partner AnnaBelle, who is living with a memory-related illness and is an attempt to re-construct AnnaBelle’s memories in face of the illness. But, as I will demonstrate, the novel is also an example of the intersubjective recognition of subjectivity in dementia, beyond the grids of binary gender.
Scientific and cultural discourses on dementia and subjectivity
Dementia is an umbrella term for a group of conditions that are defined in medical discourse as neuro-cognitive disorders that cause memory loss and cognitive changes that interfere with daily life, such as difficulties with language and orientation. Alzheimer’s disease is the most common form of dementia, and dementia illnesses primarily affect the older population, over the age of 65 (WHO, 2020). Although bio-medical discourses of dementia as a progressive, degenerative disease of the brain predominate, it could also be discussed as an existential condition and pervasive cultural narrative. In a similar vein to other contemporary illnesses, such as cancer or HIV/AIDS, dementia is surrounded by metaphors that signify wider cultural anxieties (Sontag, 1978, 1989; Zeilig, 2013). As argued by anthropologist Margaret Lock (2013), dementia is associated with what is most feared about ageing and growing old, and it is also frequently described in terms of crisis, and as a catastrophe threatening to overwhelm us as populations age across the globe (Zeilig, 2013; Latimer, 2018). The “threat of dementia” also becomes visible in the often monstrous and dehumanising terms used to describe people with dementia, such as “zombies” (Behuniak, 2011; Peel, 2014) These terms reflect a pervasive discourse of dementia as a gradual “loss of self” (Herskovits, 1995; Kontos, 2004, 2012).
However, as pointed out in the introduction, discourses of dementia as the loss or deterioration of the self and subjectivity have also been challenged by scholars, who describe subjectivity in dementia as being withheld through intersubjective relationships (see for example Kitwood, 1997; Sabat and Harré, 1992; Hydén et al., 2014). The most influential example is Tom Kitwood’s (1997) work, which has influenced both research and care practices with his so-called person-centred approach to dementia. Kitwood describes personhood as a “standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust” (1997, p. 8), thus explicitly underlining the close association between personhood and recognition of one’s self by others. Lucy Burke argues, however, that the centrality of intersubjective recognition to our being and becoming as subjects “is placed in parentheses in prevailing biomedical models of dementia and in neuroscientific discourses”, which confine subjectivity to the domain of cognitive capacities and “reducible to the functioning (or otherwise) of the grey and white matter enclosed within our skulls” (Burke, 2014, p. 33). For this reason, recognition has been highlighted as a particularly central ethical and political project in dementia studies, a project that extends subjectivity beyond cognitive functioning (Burke, 2014; DeFalco, 2010).
However, within dementia studies, recognition of subjectivity (or indeed, of the self or personhood) is rarely discussed with reference to different social positionings and intersections of such aspects as race, ethnicity, class, gender or sexuality (Hulko, 2004, 2009). Discourses of a loss of self, or of a subjectivity in decline or degeneration, seem also to be closely connected to a loss or disruption of intelligible gender; the monstrous and abject figuration of the “demented” is simultaneously devoid of normative cognitive function/humanity and normative gendered subjectivity and embodiment (Sandberg, 2018a). As I have argued elsewhere, within the wider project of sustaining personhood and recognising subjectivity in dementia, in both research and care practice, there are sometimes implicit and (rarely) explicit acknowledgments of the significance of gender (Sandberg, 2018a). For example, a qualitative study by Hellström et al. (2015), on experiences of the home and household chores among women with dementia, highlight how household activities are significant for feeling like a “competent wife” when living with dementia. Another example is Tolhurst and Weicht’s (2017) qualitative study of the strategies that men with dementia employ to preserve and protect their own personhood and masculine status in the face of dementia, which included “remaining unmoved”, “fighting back”, “emphasising social contributions” and “re-defining services”. Still, what seems to be assumed in these studies, as well as in other research on gender and dementia, is that gendered expressions somehow emerge from stable pre-existing sexed/gendered subjects, with a uniformly gendered past (Sandberg, 2018a). In contrast, the theoretical position is taken in this article, which will be developed below, suggests that to emerge and become intelligible as a human subject requires becoming recognisable within a matrix of gendered intelligibility.
Recognisability and intelligibility
Understandings of recognition as central to how we emerge as subjects are not unique to dementia studies but resonate in studies in the social sciences and humanities more widely. In feminist theory, in particular, notions of relational selves and intersubjectivity have been developed in order to challenge Western phallogocentric conceptualisations of the autonomous and rational subject (Benjamin, 2013; Anderson et al., 2020). As feminist psychoanalyst Jessica Benjamin suggests, recognition could be understood both as a “psychic position […] in which we know the other’s mind as an equal source of intention and agency and being affected” and as a “process or action” whereby I am confirmed as a subject and reciprocally confirm the other as subject (Benjamin, 2017, p. 3).
However, critical scholarship emerging from within feminist/queer/post-colonial and critical disability studies has made significant contributions to discussions about how being understood and recognised as a human subject is intricately intertwined with social inequalities and power asymmetries pertaining to gender, sexuality, social class, race and ability. The work of Butler describes in detail how subjectivity is always bound up with operations of power: “subjects are constituted through norms which, in their reiteration, produce and shift the terms through which subjects are recognized” (Butler, 2009, p. 3). In Butler’s theorising, recognition is always preceded by recognisability, as the discursive conditions under which recognition becomes possible. Butler (2009, p. 5) proposes:
If recognition characterizes an act or practice or even a scene between subjects, then “recognizability” characterizes the more general conditions that prepare or shape a subject for recognition—the general terms, conventions, and norms “act” in their own way, crafting a living being into a recognizable subject, though not without errancy or, indeed, unanticipated result.
Butler argues, moreover, that the emergence of subjects as recognisable depends in turn on “schemas of intelligibility” (Butler, 2009, 6f). One such schema of intelligibility, which is discussed in Butler’s early work, is the “heterosexual matrix”, which she describes as a “grid of cultural intelligibility through which bodies, genders and desires are naturalised” (Butler, 1990, 194 note 6). In other words, intelligibility is to a great extent linked to being and becoming intelligible as a binary gendered (and heterosexual) subject. The term ‘performativity’ in Butler’s work refers to how gender emerges from reiterated performances. These performances are not, however, individual accomplishments but occur in relation to cultural and institutional backup, discursive regimes that postulate what can become a thinkable and livable subject. Being desired by and desiring the opposite sex is thus a central tenet of becoming intelligibly gendered.
While function/ability, or, more specifically, cognitive function, is not discussed explicitly in Butler’s work, it is possible to think of a cognitive function as another significant “schema of intelligibility” from which we emerge as recognisable human subjects (Bergenmar et al., 2015). This seems particularly salient because, thinking with Fernando Vidal (2009), we live in a “neuroculture” in which modern subjectivities are assumed to be firmly situated within our brains. We do not just have our brains but, essentially, we are our brains in contemporary culture (Vidal, 2009; Vidal and Ortega, 2017). In this context, (preserved) cognitive ability becomes imperative for subjectivity, as argued by Williams et al. (2011, p. 242):
Indeed, memory loss and cognitive impairment not only indicate a possible slide into old age dependency and decline, but also represent a potential loss of successful selfhood and life-long social identities. Because dementia is both a disease and an existential condition, forgetting, in the neuroculture of healthy ageing, is a sign of failure.
Within this neuroculture, being unable to process information, to remember, or to perform a rational and coherent social self could in this line of thought be understood as having a “failed” or unintelligible subjectivity. This unintelligibility is further exacerbated by the cultural narratives that postulate the “demented” as abject, zombie-like and non-human, which consequently forecloses the recognisability and prevents the recognition of the person with dementia.
Although gender and cognitive ability could be understood as different schemas of intelligibility through which human subjectivity is recognised, they are also, as I will argue in the course of this article, closely intertwined. In some cases, the person with dementia is positioned as Other as a result of cognitive decline, which effectively also results in a decline in, or even loss of, gendered intelligibility.
For my discussion on recognition, gendered subjectivity and dementia, I draw on two types of narrative. Firstly, narratives from a qualitative interview study with heterosexual couples living with Alzheimer’s disease and, secondly, the narrative of an autobiographical novel. I think of this combination of materials as a form of “scavenger methodology”, a term coined by Halberstam which denotes “attempts to combine methods that are often cast as being at odds with each other, and it refuses academic compulsion toward disciplinary coherence” (Halberstam, 1998, p. 13). Clearly, the interview narratives and the narrative of the novel are different kinds of storytelling. The interview narratives are verbal and also products of research, emerging from the encounter with me as a qualitative interviewer, while the narrative of the novel is edited and aimed at a fiction readership. Although these different contexts are significant, I argue that the texts are usefully read together as ways of gaining insight through one another. Both kinds of narrative are read as having a performative function; neither is understood as simply reflecting social realities, but as effectively shaping what subjectivities become possible and intelligible. However, the choice to include a literary narrative sprang from the conviction that fiction allows for ways of reimagining dementia, ageing and gender that were not available to the same extent in the interview material.
The interview material was first analysed using qualitative thematic analysis, and one of the significant themes emerging was a loss of reciprocity and a loss of sustained intersubjective recognition. Coming from a background in gender studies, I became particularly interested in how disrupted recognition was also linked to gender, of being or no longer being intelligibly gendered. During the time when I was analysing the interview material, the novel Minns du? was published, and upon reading it I was struck by how very different this narrative was compared to the interview narratives. In the novel’s narrative, intersubjective recognition persisted but was not dependent on becoming intelligible through the binaries of Man and Woman. The novel provided both a narrative from a transgender perspective, in contrast to the cisgender heterosexual couples in the interview study, and also the potential of literature to enable alternative worldmaking, ways of rethinking both memory loss and subjectivity beyond binary gender. For this article, I have conducted close readings of the interview narratives and the parts of the novel that reflect the theme of recognition.
The qualitative interview study from which the interview narratives are drawn was conducted with 19 people in Sweden who had either been diagnosed with Alzheimer’s disease or were married to a person with the diagnosis. The focus of the study was their experiences of sexual relationships and intimacy after an Alzheimer’s disease diagnosis, and interviewees were asked to speak about their relationship biographies in the past and how they had experienced Alzheimer’s disease to impact upon sexuality and intimacy in the present (for more information on the findings of this study see Sandberg (n.d.). and Sandberg, 2020). The study received ethical approval from a regional research ethics committee in Sweden, and the participants’ informed consent was sought both orally and in writing. Following my Butlerian theoretical approach, I regard narratives on sexuality and desire as particularly fertile ground for exploring the creation of gendered subjectivities, and because the interviews were semi-structured they also allowed for extensive narration on the participants’ lives in a wider sense.
Participants for the study were recruited from memory clinics, support and advocacy groups and day centres for people with dementia. This article focuses on the narratives of four interviewees (all names are pseudonyms):
Henning, a 78-year-old man diagnosed with Alzheimer’s disease seven years previously.
Ellinor a 76-year-old woman, whose husband had been diagnosed with Alzheimer’s disease four years previously.
Anna, a 55-year-old woman, whose husband had been diagnosed with Alzheimer’s disease two years previously.
Christina, a 61-year-old woman, whose husband had been diagnosed with Alzheimer’s disease six months previously.
These interview narratives were chosen because they all, in various ways, expressed the theme of recognition or loss of recognition and highlighted the significance of gender. In the study overall, participants were aged 55 to 87. Anna and Christina were among the youngest interviewees and were wives of men with early-onset dementia. They stated on several occasions that they saw dementia as being out of place in their part of the life course. Christina, for example, exclaimed “I’m too young to be a carer”, juxtaposing herself as a woman in her early sixties to older female spouses, whom she regarded as more content with being carers. The fact that the narrative of loss was so pronounced in Anna’s and Christina’s cases could thus also be related to their age and life-course position, as they experienced the loss of a happy coupledom in later life to a greater extent than some older interviewees, who were rather more inclined to stress that they were happy about the years they had had (for a further discussion on this, see Sandberg, 2020). The impact of class position is also something to consider. Henning, for example, was upper-middle-class, with both the financial resources and the cultural and social capital to continue an active life, which also meant that he was able to sustain a successful self while living with dementia, and his subjectivity could thus perhaps be more easily recognised. Consequently, although this article specifically discusses the significance of gender for recognition and recognisability in dementia, the intersections of other social locations, such as age and class, also influenced who was recognised when living with dementia, and how (Hulko, 2004, 2009).
Narratives of experiences of living with dementia are manifold and sometimes contradictory, including stories of both “tragedy” and “living well” (McParland et al., 2017). As a feminist critical scholar, I have had great difficulties in determining how to give voice to both the interviewees with dementia and their partners, in particular when experiences were incongruent. Voicing the views of non-ill spouses runs the risk of silencing and overlooking the agency of people with dementia. Yet, I also wanted to give voice to the partners, among whom many were wives of men with dementia and in a vulnerable gendered position as female carers. In this particular article, the voices of the female partners without dementia are more pronounced, and in some instances, they draw on cultural tropes of dementia that could be understood as stigmatising, infantilising and sometimes even dehumanising. For example, the wives Anna, Christina and Ellinor all draw on metaphors of the husband with dementia as being a child/childish. This resonates with long-standing ideas of old age and dementia as a “second childhood” and of people with intellectual disabilities as immature and hence not fully developed into adult human beings (Jongsma and Schweda, 2018). It is necessary to acknowledge that these discourses are highly problematic because they deprive persons with dementia of agency and position them as Other in relation to a cognitively normative position. Still, it is not my intention to moralise or to judge these wives for their use of language; they were experiencing a difficult situation and drew on the dominant discourses and cultural narratives available to them in order to make sense of living with dementia.
While the interview narratives discussed in this article are largely about disruption or loss of reciprocity and recognition, the novel, in contrast, is an example of sustained recognition. Swedish author Alice Staffan Beckman’s short autobiographical novel Minns du? [Do you remember?] is an attempt by the narrator Alice to reconstruct the memories of theirFootnote 1 partner AnnaBelle, who is living with a memory illness.Footnote 2 As such, it ties into a by now fairly abundant literature that seeks to write about subjectivity and dementia illness from the perspective of a partner or family member. This literature, which Burke (2014) refers to as Alzheimer’s memoirs, tells the stories of another person’s illness and simultaneously engages in intersubjective storytelling of both one’s self and the person with dementia. This project, as pointed out by Burke (2014) and DeFalco (2010), among others, is imbued with many ethical difficulties: how does one narrate the story of a person who is no longer capable of engaging in this narration herself? And whose narrative does it become in the end? The responsibility that comes with bearing witness, and the unavoidable omissions that occur when relating the memories of their lover AnnaBelle, are issues that Alice reflects upon throughout the novel:
When reading through what I’ve written so far, I can see that the “author” in me has intruded here and there […] I need to be more careful now when writing about our life together, hers and mine. Although perhaps unavoidable, I must seek to avoid portrayals as it is she, not I, who should remember. (p. 40)
Although the novel is part of a larger genre of Alzheimer’s memoirs, it is unique in combining a narrative on subjectivity when living with memory loss with a narrative on transgender subjectivity. The novel’s narrator, Alice, is trying to preserve AnnaBelle’s memories by recollecting things she has told about her own life in the past, as well as their joint memories. But this storytelling ultimately also becomes a narrative about Alice’s ambivalence about their own gender identity and of coming to terms with non-binary gender identity. As such, it is also a form of a trans memoir, whereby Alice as a trans subject is also written into existence through the novel.
In the discussion that follows, I will start with the interview narratives and then turn to the novel later on. All quotations from the interviews and the novel have been translated from Swedish by me.
Being recognised as a man
The 78-year-old Henning presents himself as an active man. He visits the gym several times a week and regularly goes to the cinema and the opera with his wife. When he received his Alzheimer’s disease diagnosis seven years prior to the interview, he was still working with his own company in finance, and he speaks of having been very invested in his professional career. Being a successful and accomplished man is a central part of his self-presentation overall, and he repeatedly refers to famous people he knows and proudly shows me around his large apartment, which has artworks hanging on the walls and a stunning view.
Henning’s self-presentation as successful also includes narratives that build on implicit markers of masculinity: physical and intellectual ability, as well as sexual assertiveness. On several occasions, he highlights his outstanding intellect by saying things such as: “My greatest asset has always been my brain.” He highlights sporting achievements in his youth: “I played football, I was a great runner.” And he describes the many women he has made love to over the years: “Well it’s not a three-digit number, but pretty close.” The interview is thus a site for the accomplishment of masculinity, even though he does not explicitly raise the topic (Pini, 2005).
During the interview, when discussing the impact of Alzheimer’s disease on his everyday life, Henning says:
[Living with Alzheimer’s disease] Well, it’s no fun, of course. No fun at all. But somehow, I’ve got a really strong brain, and they’re surprised at the hospital where I go for check-ups, they told me that I have the strongest brain they’ve ever examined in this hospital. But there’s a decline in memory function.
In this quotation, Henning underlines the persistence of his “strong brain”, something with which he clearly associates himself, and separates his declining memory from the overall functioning of his brain. This way of emphasising the durability of his “strong brain” could be understood as a way of challenging discourses of Alzheimer’s disease as decline and deterioration and re-asserting his (cognitive) subjectivity to become recognisable within a discourse that positions people with dementia as devoid of subjectivity due to changing cognitive function. But, given the persistent cultural associations between reason/intellect/the brain and masculinity, Henning’s narrative resistance in this quote could also be understood as a simultaneous (re)assertion of his masculinity.
Henning does not wholly reject the impact of Alzheimer’s disease on his life. He especially highlights the loss of no longer being able to work. If it was not for dementia, he would have continued, he says. “My ambition was to work to the age of 93. But the illness made that impossible.” Still, although working life is no longer a sphere for the accomplishment of masculinity, his narratives of sexuality and the intimate relationship with his wife remain as another significant sphere for the making of masculinity. He has always perceived himself as ugly, he says, and heterosexual interest from women has thus been a way to overcome his insecurities and increase his self-esteem. When talking about his relationship with his wife, he underlines her attractiveness on several occasions: “Well, you can see for yourself, she’s damn sexy,” and he tells me that they still enjoy sexual intercourse on a weekly basis.
That’s a great thing. Because it’s really important, this intimacy. There’s some kind of recognition coming from that.
This “recognition” that sex brings could be understood as a more general recognition of subjectivity, of having one’s sense of self-acknowledged overall, which may be of particular significance when living with dementia, which may impact negatively on self-esteem (Holdsworth and McCabe, 2018). Given Henning’s overall narrative, however, which marks the significance of masculinity for the shaping of his subjectivity, sex as “recognition” also seems to be part of having his masculinity recognised. This is further supported by the way in which he discusses the risk of future impotence. Henning says that “the day will probably come when I can’t get a hard-on” and that he may then not be able to “sexually satisfy” his wife, which indicates an investment in men as “doers” of women’s sexual pleasure through penetrative intercourse (Sandberg, 2011).
This interview with Henning highlights the significance of continuously having one’s gendered subjectivity recognised when living with Alzheimer’s disease, and also how men with dementia may actively engage in and shape narratives that make them recognisable as masculine subjects (Tolhurst and Weicht, 2017). Henning’s use of markers of masculinity, such as engagement in work and sporting achievements in the past, is similar to Phinney and colleagues’ (2013) case study of the two men Tom and Roger, who are living with dementia. In their study, the men themselves, as well as their wives and adult daughters, emphasise their backgrounds as “good family men” engaged in “a lifetime of hard work […] community engagement, and commitment to family” (Phinney et al., 2013, p. 367). It is evident in this study by Phinney and colleagues that the accomplishment of masculinity is not only something in which the men themselves were engaged, but their families were also actively seeking to counter the challenges that dementia posed in terms of activity and engagement in order to sustain their father’s/husband’s position as “a man of strength and influence” (p. 368).
The desire to sustain the masculine subjectivity of a loved husband with dementia also resonates in my interview with the 76-year-old Ellinor, whose husband Eskil had been diagnosed with Alzheimer’s disease four years previously. Although he still reads and talks without problems, he has a hard time performing everyday tasks and orienting himself. Eskil moved into a nursing home the year before the interview and before being admitted there he went missing on several occasions. Caring for him also caused health problems for Ellinor. Still, she describes their marriage as very happy and filled with joy, and she finds it difficult to leave her husband at the nursing home, and thus she goes there to sleep every night.
Ellinor vividly describes her husband in the past as an intelligent man and a leader. In the community, he was actively engaged in the local football team. In their private everyday life, he was “a rock” for her to trust and rely on. However, Alzheimer’s disease changed their relational patterns. Ellinor said:
The personal, social relationship, it [changes], when you become the mother of your own husband. That’s a difficult thing to accept. To see this capable human being whom I’ve respected for his strength, wisdom and agency being degraded. Although he’s still very smart in terms of coming up with answers to things.
The use of the terms capable, wisdom, strength and agency in this quote denotes several masculine characteristics that Ellinor’s husband possessed earlier in life, and that she perceives as under threat as a result of his illness. Still, although she feels that she is increasingly taking all the responsibility in their relationship and that she is “losing the adult person” who was her husband, she also speaks of how she seeks to sustain him:
At the same time, strangely, I try to uphold him. […] I want him to be respected still. […] Because that’s his identity, I get to keep some of his personality, and I want people to understand that he has been an intelligent person. A funny and social person. A person who has been able to assert himself.
She says that it makes her happy to see him a joke and make conversation in the nursing home because this gives the staff an idea of who he is (or has been). Ellinor’s narrative reiterates some of the results from work on personhood in dementia studies, on the significance of having one’s self and dignity continuously acknowledged when living with dementia and the role that a spouse may play in this sustaining (see e.g., Hellström, 2015). But Ellinor’s narrative also indicates how the desire to uphold the respect for a husband with dementia is also linked to upholding masculine subjectivity (Phinney et al., 2013).
Moreover, Ellinor’s desire to uphold her husband’s masculine subjectivity does not stop at the “front stage” of the nursing home but goes all the way into their bedroom and their sexual, intimate relationship. She describes experiencing sex with her husband as increasingly unpleasant as the illness progresses and he becomes more childlike (Davies et al., 2010; Hayes et al., 2009). But she also says that she feels sorry for him and therefore she “puts up with it”. When asked if she feels that sex is a duty in a marriage, she answers:
Well, no, it’s because it makes him happy. There’s joy in it for him. And I’m depriving him of that joy, although I don’t want to. It’s just that I couldn’t stand the physical intimacy, the touch. And then I feel bad and guilty because I see that it makes him happy. This means a lot in men’s lives, I think. And I’ve noticed that he’s very proud of being able to have an erection still.
Here, Ellinor makes it clear that the sustaining of masculinity also involves the upholding of a “phallic sexual morphology”, the masculine sexual embodiment that is epitomised by erection (and the capacity to penetrate) (Sandberg, 2018b; Grosz, 1994). Allowing him to feel the joy and pride of sexual encounters and a phallic morphology could thus be understood as a form of continuous recognition of his masculine subjectivity. Yet, Ellinor’s narrative also illuminates how this recognition of masculinity may become possible at the expense of women’s sexual subjectivities and desires.
The two examples discussed so far, Henning and Ellinor and her husband Eskil, reveal how recognition, of having one’s subjectivity upheld when living with dementia, is linked to being recognised as gendered, or more specifically, gendered as a masculine subject. While there were other female partners in the interviews who expressed a desire to uphold their husbands, there were no equivalents among the interviews in this study of women with dementia emphasising (implicitly or explicitly) their feminine gendered selves, nor did their male partners particularly underline the need to sustain their partners as women. Following feminist theorists such as Luce Irigaray (1985) or Simone de Beauvoir (2011), if women are the Other in Western cultures and as such not fully acknowledged as subjects, this may also impact upon whose subjectivities are more readily understood as threatened by dementia. In other words, the fact that Henning actively seeks to have his subjectivity recognised through narratives of masculinity and that Ellinor seeks to have her husband continuously recognised as a respected man could indicate a particular threat that dementia poses to male subjectivity. But it may also suggest something about how male subjectivities are privileged and more significant to recognise when living with dementia (Sandberg, 2018a).
Becoming strange(r)—beyond recognisability and gendered intelligibility
While the discussion so far has revealed the possibilities of the continuous recognition of gendered subjectivity in dementia, in particular, the recognition of masculinity, the discussion that follows focuses on instances where men with dementia are posited as unintelligible and outside the frames of recognisability, and how this causes disruptions to gendered subjectivity, not only for the men themselves but also for their female partners.
We are sitting on the balcony. Anna smokes and talks without stopping, it is late August and the sun is still warm. At the time of the first interview, Anna is 55 years old. Her husband Anders is 57 and was diagnosed with Alzheimer’s disease less than two years ago. As related in the introduction, Anna describes her relationship with her husband as a passionate love affair, but also a bumpy ride during which they have broken up on several occasions. Anders needs his space, and she has a hard time understanding his ways. And things are becoming increasingly confusing as Anders starts to forget things. Anna describes the diagnosis as “a great relief, having it confirmed, a relief that so many strange things suddenly get an explanation”.
But Anders’ Alzheimer’s diagnosis also involves great changes in their relationship, not least in terms of their intimacy and sexual relationship. Anna says that what she fell for in Anders was his “brain”; “ I was simply fascinated by his intellectual capacity”, but now there is “another person in front of me who doesn’t respond to me intellectually the way he used to”. Anna tries on several occasions to describe this experience of having a “new” partner and says that she is “unsure who he is” and that he is “both the same and different”. This perception also extends to his body:
It’s the same physical body, the same eyes, but not the same gaze. And it’s still not clear to me who Anders is today; I have a hard time knowing where he is. (My emphasis).
Anna describes how the gaze is linked to her perception of touch, and how this change in her husband’s gaze also has an impact on her experiences of touch:
Having eye contact very much boosts the physical touch. And that [touch] has become numb, so numb. And I react, it’s like I’m lost. I don’t know if Anders experiences this the same way. It feels strange, it’s a queer feeling. (My emphasis)
Anna’s words above, about not knowing “where” or “who” her husband is anymore, resonate with the wider cultural narrative of the person with dementia as being a “stranger” and lost. What seems in particular to create a “strange”, or “queer” feeling is the perception of the husband as being still here and yet gone, an experience that very much resonates with the Freudian concept of the Uncanny/unheimlich. As Stacey and Bryson (2012, p. 6) discuss, the uncanny could be conceptualised as “the oscillation between something familiar and something strangely disturbing”, which seems to succinctly describe Anna’s experience of encountering her husband. While touch and gaze may function as modes of inter-subjective recognition, dementia as Uncanniness/unheimlichkeit disrupts this recognition.
The ways in which dementia is associated with the uncanny, in Anna’s narrative, as well as in wider cultural narratives and discourse, invoke in Butler’s words an “unrecognizability” of people/life with dementia. Yet this unrecognisability, this becoming stranger, challenges not only the subjectivity of the person with dementia but also the subjectivities of those whose lives are entangled with that person, as Burke (2014) points out. This becomes most evident in Anna’s narrative about not recognising their couple relationship:
I meet his eyes and don’t recognise [myself]. And where does that take us? That’s what I’m trying to get my head around […] where do you find this extended feeling of intimacy? Every time Anders leaves the house, we hug and kiss, and I look up [at him] and I can’t recognise [myself].
Not recognising oneself in this quote seems to refer to a feeling of lost mutual recognition, of no longer being able to mirror one’s own subjectivity through the eyes of the other (Benjamin, 2017). Yet, this unrecognisability is also linked to gendered intelligibility, of no longer experiencing the partner with dementia and oneself as the gendered couple they used to be. When Anna describes their relationship in the past, she strongly emphasises how she was affirmed as a woman.
One of the things that was very clear when I first met Anders was how I felt so beautiful around him. And it’s continued like that throughout all these years. I felt incredibly beautiful. I was The Woman in the world and Anders was The Man. And I knew, I thought about it just the other day, that I could come into his office filled with people, and as soon as I got there I was like “this is The Man in my life”. Totally blown away.
Anna’s description above, of feeling like a woman in the company of her attractive husband, could be understood as an everyday example of the “heterosexual matrix”, how gendered subjectivity, becoming intelligible as a man or a woman, is linked to desiring and being desired by the opposite sex (Butler, 1990). But dementia does something to the heterosexual matrix. Anna’s gendered subjectivity, of recognising herself as a woman, has changed:
I was reflecting on that around the time of the diagnosis. How my feeling of being The Woman in the world was so strong. […] And I don’t feel that anymore. […] I don’t have that feeling of being a woman the way I did before.
When asked about why she feels this way, Anna says: “he made me feel like a woman” and that this for her was linked to him being a man, The Man. But Alzheimer’s disease has changed him into someone she is no longer sure of, she says, someone she does not recognise. Her attraction to him was linked to his intellectual capacity, and now that the intellectual reciprocity in the relationship is missing, she no longer perceives him as The Man. And as a result she does not experience herself as a woman in the way that she used to.
Anders isn’t the person I fell in love with, quite simply. I told you before, one of the things I fell for completely was his brain, his intellect. And suddenly there’s another person in front of me who I can no longer encounter intellectually […] the way I used to. I can’t have a conversation with Anders, just a few sentences at a time. And of course it’s different, because it’s not the same person.
Pervasive cultural narratives of dementia that evoke the ghostly, uncanny, or even monstrous, such as narratives of “the loss of self”, “the birth of a stranger”, “an empty shell” or “zombies” (Behuniak, 2011; Zeilig, 2013; Peel, 2014; Hillman and Latimer, 2017; Herskovits, 1995), resonate with Anna’s narrative and seem to contribute to the production of the unrecognisability of people with dementia. In turn, this unrecognisability challenges subjectivities in several ways; if I can no longer recognise the other, how can I recognise myself? But if the earlier narratives of Henning and Ellinor suggest how the sustaining of subjectivity may be upheld through gendered recognition, Anna’s narrative also shows how the cultural production of people with dementia as unrecognisable subjects is also linked to a disruption of gendered subjectivities and a challenge to the heterosexual matrix.
Previous studies on coupledom and dementia have highlighted the loss of reciprocity as having a profound impact upon a couple’s everyday intimacy when living with dementia, in particular for female partners, and this is also clearly reflected in Anna’s narrative (Evans and Lee, 2014; Davies et al., 2010). However, what has not been discussed in earlier research is the gendered aspects of (loss of) reciprocal recognition. If reason and intellect are indeed culturally associated with men and masculinity, then Anna’s desire for her husband’s “brain”, his intellect, could then be understood as a desire for masculinity. But this also implies that the perceived loss of his brain also impacts upon her perception of him as a man. If an emphasis on an excellent brain, as seen in Henning’s case earlier, is part of gendered performance, then Anna’s narrative of her husband’s lost intellect could be understood in parallel as disrupted gender performativity. And as he becomes (partly) unintelligible as a man through this discourse of loss of this brain, this also results in Anna becoming unintelligible as a woman.
Becoming the child: asymmetry and unrecognisability
Intertwined with Anna’s narrative of her husband as no longer The Man, and consequently of herself as no longer The Woman is also a narrative of increasingly experiencing herself as a mother. She compares herself to being the mother of a baby, how breast-feeding and “constantly trying to keep up with things and make everyday work” precludes the experience of being a woman, as a desiring and desirable gendered and sexual subject. Implicit in the construction of herself as a mother is also that of her husband as the child.
Christina, a 61-year-old woman whose husband Carl, 67, was diagnosed with Alzheimer’s disease just six months before the interview, explicitly uses the term “child” to conceptualise her husband after his dementia diagnosis. Similarly to Anna, Christina describes a very passionate relationship, and her husband as the love of her life: “The only man I ever loved”. They have gone through several hardships and losses in their forty years of marriage. Still, in Christina’s narrative, dementia figures as a different kind of loss, that seems to have triggered more alterations and affects their relationship and subjectivities in more profound ways.
Christina describes herself as a very capable woman in many respects: “I’ve been the one who went over with a drill to help our kids put up shelves”. At the same time, she speaks of having been very emotionally dependent on her husband.
He was able to handle me when I was angry. I could become very childish, and he could handle that. So I’ve always depended on him a lot.
However, since his dementia diagnosis, she perceives that they “no longer have a marriage like we used to”, which she relates to her now being responsible for everything in their everyday life. And her perception of and feelings for her husband have also changed:
He doesn’t feel like my husband anymore. He doesn’t feel like my husband. More like a child. But not quite like that either. But more like that. He’s not my husband anymore, I feel.
By repeating three times in this short quotation that she does not experience him as her husband anymore, Christina firmly underlines her experience of loss. And, although this is done with evident hesitation, she also juxtaposes the subjectivity of her husband to that of a child. Her husband’s childishness is also evoked in other instances during the interview, when, for example, she talks about him being angry in a different way than before:
He’s angry with me in a way that he hasn’t been before—I’m sort of thinking: has he always been this angry with me really? Has he hidden this or is it something new? That the defiance of a teenager… [cries and takes a break to blow her nose].
In Christina’s narrative, she positions herself as the “childish” person in the past, that she could become like “a three-year-old” when she became angry, whereas he was someone whom she felt she could “lean on” and seek emotional support from. Notably, her narration of her own gendered subjectivity and their gendered relationship in the past is complex. She does not describe herself as an altogether dependent or weak woman, she also positions herself as a capable person who did practical things in their home while her husband was caring for the children. Still, despite this complexity, the arrival of dementia is described as something that disrupts the positions and subjectivities in their relationship. He becomes the child, a subjectivity irreconcilable with that of the husband/man.
This characterisation by the partners of persons with dementia of their relationship as more of a child/parent bond than that of a symmetrical partnership between two adults also resonates with previous studies on coupledom and dementia (Baikie, 2002; Davies et al., 2010; Hayes et al., 2009). However, what I want to discuss further here is how the positioning of the person with dementia as a child is also linked to the unrecognisability of dementia subjectivity and is in addition intertwined with an unintelligible de-gendered subjectivity. The narrative of the husband versus child subjectivity has evident gendered connotations when the role of the husband is that of a man “to lean on”, to depend on and be weak and vulnerable with, whereas the child is dependent and vulnerable and as such occupies a feminised position. Christina’s description of her husband in the past as someone to “lean on” resonates with interviewee Ellinor’s description of her husband as a “rock” for her in the past, and someone she respected for his “strength, wisdom and agency”. The child/parent metaphor is also evoked in Ellinor’s narrative, where she says that nowadays she perceives herself as “the mother” of her husband. But there is a difference between Ellinor’s and Christina’s narratives. While Ellinor’s narrative is about her attempts to continue to recognise her husband’s masculinity and the man he is/has been, Christina’s narrative reflects a position in which dementia inevitably de-genders her husband, transforms him into a child, and as such renders him unintelligible.
Later in the interview, Christina returns to the metaphor of the child, when talking about the wives she has met in the support group she attends and how they would feel about being sexually intimate with their husbands with dementia.
I think that many feel the way I do, that their husbands have become too childish. That’s what several [other women] have said, that it’s like having a child, it’s almost like having a dog. That walks just behind me. You’re not having sex with a child or a dog, right?
Here, Christina not only employs the child metaphor to illustrate the unintelligibility that the “demented” embody but goes even further and draws on the metaphor of the dog/animal. Thus, in a similar way to the child, the dog/animal here comes to represent dependency and cognitive Otherness and as such, the person with dementia is no longer fully qualified as the Enlightenment version of the human, characterised by autonomy and reason (Bergenmar et al., 2015). Christina’s exclamation: “you’re not having sex with a child or a dog, right?” also reveals how the asymmetrical position of the “demented” situates him as an undesirable sexual subject and as such positioned outside the heterosexual matrix of desirable gendered subjects.
As I have shown so far, Christina and Anna juxtapose the recognisable gendered subjects of their husbands to the (more) unrecognisable subject: the familiar stranger, the child or the animal. As such, their narratives show how dementia may disrupt intersubjective recognition and how this was linked to gender performativity. But a question arises: is there any possibility of becoming recognised and upheld as a subject when living with dementia in ways that are not restricted to the schemes of intelligibility proposed by binary gender? To explore this question, in the final part of the article I will turn to the novel Minns du? as an example of how continuing recognition in the face of memory loss may extend beyond the heterosexual matrix.
Recognition beyond memory—beyond gender
The novel Minns du? starts out by describing scenes in the nursing home where Alice’s lover AnnaBelle lives. They run down the corridor together and into AnnaBelle’s room, where the two old lovers hold each other and kiss. They lie close together, AnnaBelle in foetal position, as Alice reads poems to her. Their intimacy extends beyond words and seems instead to emerge out of a tactile language:
Neither at that time nor afterwards did we have the words to express what we experienced, we don’t have them and we don’t need them, my body around her body, her body embraced by mine, have received and communicated everything. (p. 9)
These opening scenes depicting the intimacy between Alice and AnnaBelle are not only representations of the significance of touch in later life. They also simultaneously establish the theme of intersubjective recognition in the face of a memory illness that runs throughout the novel. Both touch and gaze recur in various forms in the novel. Alice and AnnaBelle dance, they kiss and make love, and Alice says:
[…] I’m thinking of AnnaBelle and myself and that I’ve always known-felt-assumed that bodies have their own memories. (p. 63)
In contrast to the interview, narratives discussed earlier, describing the partner with dementia as strange and how this extends into feeling like strangers touching, Alice’s narrative focuses on embodiment and touch as forms of continued reciprocity and recognition, of body remembering.
Also, while Anna, discussed earlier, describes how, when she looks into the eyes of her husband, she cannot recognise herself, the gazes in Minns du? are gazes of recognition. On several occasions in the novel, Alice’s gaze at AnnaBelle recurs as Alice describes her as a wonderful, beautiful and quirky person, in both the past and the present. In another scene from the nursing home, Alice and AnnaBelle switch on the radio and dance together:
And when I sat down on the bedside, she danced for me and enjoyed herself, so young, so beautiful, so eternally tempting. (p. 34)
Alice sees AnnaBelle, and what Alice regards as her “essence”, which extends beyond her subjectivity as ill. But it is not only Alice who sees AnnaBelle, who continues to recognise her; the gaze is mutual. When Alice enters the nursing home and AnnaBelle sees Alice, this is described as:
She lifts her eyes towards me, and it’s like a flower that springs into bloom. (p. 97)
Moreover, Alice does not position themself as the sole carer in the relationship but indicates mutual care between the partners.
You take care of me just as much as I do for you, though it may not seem that way! (p. 104, emphasis in original).
These narrations of the intimate relationship when living with dementia contrast starkly with narratives of the loss of self and of the loss of reciprocity in relationships, of the “demented” as an abject stranger beyond intelligibility or recognisability.
Interestingly, the intersubjective recognition that pervades the narrative of Minns du? is not only an example of how the subjectivity of the person with dementia may be sustained. It is just as much a recognition of Alice’s subjectivity as trans/nonbinary. It was not until late in life, in the company of AnnaBelle, that Alice was able to come to terms with their non-binary trans identity. AnnaBelle is described as someone who wants Alice “still–or perhaps just because of!” Alice’s subjectivity beyond binary gender (p. 114). At the very end of the novel, Alice describes the first sexual encounter between them, a scene that underlines the experience of being recognised and loved:
Quite often, my love, I think of that defining moment, the third or fourth time we met, when we tried to do what everyone does, and it turned out it didn’t work. Although this failure must have terrified us, the wonderful thing was that neither of us let it affect our intimacy or our infatuation, both of us learnt that the other cared more for us than that. (p. 114)
This “failure” seems to describe a scene that is quite common among older lovers, whereby sexual encounters must be negotiated in the face of ageing embodiment. But it also defines a moment when Alice experiences themself as recognised and loved for the first time after coming to terms with their transgender identification.
This experience of having one’s subjectivity recognised and validated continues even as AnnaBelle’s memory declines. At the very end of the novel, Alice writes:
Throughout these years we’ve never mentioned it with a word, not until I [now] put it down on paper because it is part of the memory you have lost, the memory of our wedding night when the bride and groom (or bride and bride?!) in great relief discover that there is nothing to prove, they may love and be loved, desire and be desired without disguise … they may finally be what they have been forced for so long to hide. This, what we are now, my love, what we are and may be, regardless of what we remember or not. (p. 115)
These final words highlight the experience of living outside the heterosexual matrix and yet becoming intelligible and recognisable. But it also renders the loss of memory as being of no significance to the continuity of this recognition, that their intelligibility and recognisability do not lie within the realm of cognitive remembering. AnnaBelle may recognise Alice’s subjectivity, despite her memory illness; “she may still accept my love and love me back”, as Alice asserts (p. 39). And Alice, in turn, may recognise AnnaBelle, regardless of what she remembers.
It is notable that, throughout the novel, the word dementia is never mentioned, and on only one occasion does Alice write about the first occurrences of AnnaBelle’s memory problems. This seems significant because it means that AnnaBelle is never reduced to being her illness or impairment. Symptoms of dementia, such as memory loss or restless behaviours, are mentioned only in passing, and she emerges primarily as the lover who continues to console and recognise Alice.
It is also notable how the term disorientation is used in the novel, not as a characteristic or symptom of a fearful state of dementia, but to signify the queerness of Alice’s and AnnaBelle’s relationship. This queerness is most striking in one instance where Alice describes AnnaBelle and themself as a clown couple (loosely inspired by the clowns of Fellini’s La Strada), who occasionally evoke rage and repulsion, but more often receive tender looks from people they meet on the street. Alice remarks: “we carry our love, happiness and disorientation visible for everyone to see”. This vision, of Alice and AnnaBelle as a disoriented clown couple, resonates with Sara Ahmed’s (2006) work on queer phenomenology, in which she argues that the reiterated performances that constitute gender and sexuality are also about orientation, of being oriented towards the opposite sex. Queer bodies that do not follow “the straight line” thus appear as displaying a “failed orientation”.
The queer couple in straight space hence look as if they are “slanting” or are oblique. (Ahmed, 2006, p. 92)
It seems as though it is this “wonkiness” that Alice is trying to visualise, of Alice and AnnaBelle as the clown couple who do not quite fit into this (gendered) world and are thus living with disorientation. But Alice, similarly to Ahmed (2006), does not approach disorientation as something to be wished away; instead, it is even embraced as a potential:
Disorientation is a good concept I think—if one allows it to stand for life that has not yet reached any final fixed form, that possibilities remain. (Beckman, 2019, p. 70)
This alignment with (queer) disorientation seems to do something to the possibilities of recognisability in dementia. AnnaBelle and Alice, having lived their life “on a slant”, out of orientation with the heterosexual matrix and, as such, constituting unintelligible and unrecognisable subjects, find it possible to achieve a continued intersubjective recognition when living with dementia (Ahmed, 2006, p. 67). Having already identified with Othered positions, the queer stranger, the clown or “happy children walking hand in hand on a discovery” (p. 50), they seem willing to enable the recognition of subjectivity when living with dementia in ways that do not depend on becoming intelligible as a gendered subject within a heterosexual matrix.
This article has sought to advance the discussion on subjectivity in dementia, and more specifically on how gender matters to the recognition of subjectivity in dementia. But it has also sought to explore how dementia as a position of cognitive otherness may impact upon and disrupt gender performativity. The concepts of recognition and recognisability have been central to my discussion and, following Judith Butler, I have proposed that being and becoming intelligibly gendered within the heterosexual matrix is a prerequisite for becoming recognisable and being recognised as a subject. But I have also suggested that cultural narratives of the “demented”, as an abject position beyond intelligibility, foreclose recognisability, and may thus disrupt gender performativity (Sandberg, 2018a).
The interview narratives reveal how reiterations of gender could be significant in sustaining subjectivity for a person with dementia, as seen in the narratives of Henning and Ellinor. But the narratives of Anna and Christina also point to how cultural tropes of people with dementia as strange(rs), children or animals position them as unintelligible, and thus as unrecognisable gendered subjects. As seen particularly in Anna’s case, this impacts upon the gendered subjectivity not only of the person with dementia but also of the partner, who no longer feels like a woman.
What is quite evident in the narratives of Henning, Ellinor, Anna and Christina is the investment in men as cognitive subjects, their “strong brains” and “intellect”, and how they become desirable within a heterosexual matrix through their cognitive subjectivity. Dementia as an erosion of cognitive function thus threatens masculinity in particular ways and disrupts the heterosexual matrix and the recognition of subjectivity altogether. Therefore, future theorising and research on subjectivity and dementia should further explore how dementia deeply troubles neuroculture as a masculinist culture.
Moreover, although this was not an explicit focus in this article, the illness narratives analysed could be further explored through the theorising of chronic illness as “biographical disruption”, as put forward by Bury (1982). Chronic illnesses as biographical disruptions challenge the taken for granted in everyday life, as well as the moral status and subjectivity of the individual with the illness (Hillman et al., 2018). As argued by Hillman et al. (2018), dementia causes a particular kind of biographical disruption and challenge to narrative identities because the progressive nature of the illness involves a loss of competence and control, which are valued characteristics in Western societies. What Hillman and colleagues do not address, however, is how dementia as a biographical disruption is also closely intertwined with disruptions of a gendered biography (Sandberg, 2018a). In addition, if dementia poses a simultaneous biographical disruption and a threat to masculinity, the interview narratives of Henning and Ellinor could be understood as forms of “biographical reinforcements” (Hillman et al., 2018). By trying to sustain continuity with the past, and in Henning’s case also highlighting adaptation to life with dementia, one may both challenge discourses of dementia as loss and unintelligible subjectivity and reinforce masculinity. This may have implications for both policy and practice, because the possibilities of narrating one’s self as a gendered being may contribute to an overall reinforcement of subjectivity in dementia. Still, and as I have argued elsewhere, practitioners should be cognisant of the fact that many people with dementia may not have lived normatively gendered life courses and that one needs to be alert to whose life courses are more readily recognised (Sandberg, 2018a).
If the interview narratives discussed in this article have suggested dementia as a form of “gender trouble”, then the narrative of the novel Minns du? proposes alternative ways of thinking about subjectivity, where intersubjective recognition is not dependent on either cognitive function or binary gender within a heterosexual matrix. Here, I have argued that both Alice and AnnaBelle are positioned as Other and as such are unintelligible within binary gendered/cognitive culture, but this is also what allows for intersubjective recognition. Alice and AnnaBelle need each other’s recognition and refute recognisability only in terms of cognitive function/remembering or stable binary gender. So far, very little research on subjectivity and dementia has been grounded in queer narratives or the perspectives of transgender, lesbian, homosexual or bisexual individuals with dementia (Westwood and Price, 2016). There may, however, be great potential for dementia studies to increasingly turn to narratives of subjectivities that were already positioned, before the onset of illness, as unintelligible or unrecognisable because they disrupted compulsory heterosexuality, gender conformity and ablebodiedness/ablemindedness. How do experiences of “disorientation” in terms of binary gendered, heterosexual and abled life trajectories impact upon experiences of living with dementia and the way in which subjectivities with dementia take shape?
Finally, the novel Minns du? also foregrounds the possibility that the recognition of subjectivity may not lie solely or even primarily within the realms of cognition, but that tactility and affect may also be constitutive of subjectivity. Thus, I am eager to continue to think through how affective touch may effectively both reconstitute and reconfigure gendered subjectivities in dementia, and I invite scholars in both dementia studies and gender studies to join me in this exploration.
The datasets generated during and/or analysed during this study are not publicly available due to the sensitive nature of the study and difficulties anonymizing the interviews but are available from the corresponding author on reasonable request.
They/Their are here used as non-binary pronouns.
The first-person narrator hereafter described as Alice.
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The author wishes to thank all colleagues at the Department of Gender Studies, Södertörn University, for comments and suggestions on earlier versions of this paper. A particular thanks to Dr. Sam Holmqvist. The author also sincerely wishes to thank the participants of the interview study, this work would not have been possible without you. The study was supported by the Swedish Research Council for Health, Working Life and Welfare (Forte) under Grant Dnr 2013-00275.
Open access funding provided by Södertörn University.
The author declares no competing interests.
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Sandberg, L.J. “I was the Woman, he was the Man”: dementia, recognition, recognisability and gendered subjectivity. Humanit Soc Sci Commun 8, 85 (2021). https://doi.org/10.1057/s41599-021-00758-1