"I was the Woman, he was the Man": dementia, recognition, recognisability and gendered subjectivity

The paper interrogates how gender shapes the recognition and sustainment of subjectivity in dementia. It challenges dominant "loss of self" discourses by foregrounding recognition as central to personhood, while highlighting a gap: the neglect of gender in discussions of subjectivity in dementia. Drawing on Butler’s concepts of performativity, recognisability, and the heterosexual matrix, the study asks how persons with dementia and their partners become recognisable or unrecognisable as gendered subjects. It introduces two narrative sources: qualitative interviews with heterosexual couples living with Alzheimer’s disease and the transgender/nonbinary-authored autobiographical novel Minns du? as contrasting lenses to examine recognition beyond cognitive function and binary gender.

The review situates dementia within biomedical and cultural discourses that frame it as degeneration, crisis, and existential threat, often invoking dehumanising metaphors (e.g., zombies) and "loss of self" narratives. Counter-literatures (e.g., Kitwood’s person-centred approach; Sabat & Harré; Hydén et al.) argue subjectivity can persist through intersubjective recognition. Feminist and critical theories (Butler; Benjamin) emphasize that recognition is conditioned by recognisability through norms, notably gender within the heterosexual matrix, and schemas of intelligibility. The paper extends Butler’s framework to include cognitive function as a schema of intelligibility in a contemporary "neuroculture" that equates subjectivity with brain function (Vidal; Williams et al.). Existing dementia-gender studies note gendered practices (e.g., masculine strategies to preserve personhood; women’s household roles) but often presume stable, pre-existing gendered subjects, under-theorising gender as performative and contingent. Intersectional critiques (Hulko) call attention to race, class, age, gender, sexuality, and ability in shaping who becomes recognisable as a subject.

The study uses a qualitative, interpretive approach combining two narrative sources in a "scavenger methodology" (Halberstam): (1) semi-structured, in-depth interviews with 19 participants in Sweden (individuals diagnosed with Alzheimer’s disease and their spouses) focusing on biographies of relationships, sexuality, and intimacy pre- and post-diagnosis; (2) close reading of the autobiographical novel Minns du? (Beckman, 2019). Recruitment was through memory clinics, support/advocacy groups, and day centres. Ethical approval was granted by a regional research ethics committee; informed consent was obtained orally and in writing. Thematic analysis of interviews identified a major theme of disrupted reciprocity and intersubjective recognition, with attention to gendered dimensions. Four illustrative interview narratives were selected: Henning (78, diagnosed 7 years), Ellinor (76, spouse), Anna (55, spouse), Christina (61, spouse). Close readings of relevant passages in the novel focused on recognition, touch, gaze, and nonbinary/trans subjectivity. The analysis treats narratives as performative, shaping what subjectivities become intelligible, and considers intersections of age and class in recognisability.

• Recognition and masculinity: Men with dementia and their partners mobilise gendered markers to sustain recognisability. Henning asserts a "strong brain," past athleticism, and ongoing sexual activity, using sex as a site of recognition of self and masculinity. Ellinor actively upholds her husband Eskil’s identity as an intelligent, respected leader both publicly and intimately, including affirming a phallic sexual morphology (erection) as a source of pride, though at cost to her own sexual subjectivity.
• Uncanny estrangement and gender disruption: Anna describes her husband Anders as simultaneously the same and different—"the same body, but not the same gaze"—producing an uncanny, "queer" feeling that disrupts intersubjective recognition. As his intellectual reciprocity declines, she no longer recognises him as The Man, and consequently no longer feels herself as The Woman, revealing how dementia can destabilise the heterosexual matrix and gendered subjectivities.
• Infantilisation and de-gendering: Christina characterises her husband as becoming child-like (and at times likened to an animal/dog), undermining his status as an adult, desirable, gendered subject. This positions him outside Enlightenment ideals of autonomous, rational humanity and beyond the heterosexual matrix’s terms of sexual desirability.
• Recognition beyond memory and binary gender (novel): In Minns du?, recognition persists through touch, gaze, and mutual care rather than cognitive remembering. Alice (nonbinary trans) and AnnaBelle enact sustained intersubjective recognition; bodies "remember" through tactility and dance. The narrative recognises Alice’s trans/nonbinary subjectivity and portrays love and desire outside the heterosexual matrix, embracing queer disorientation as a resource for recognisability.
• Intersectional influences: Age/life-course (early-onset contexts) and class (e.g., Henning’s resources) affect capacities to maintain recognisable subjectivities and mobilise reinforcing narratives.

The findings demonstrate that recognisability as a subject in dementia is closely tied to gendered intelligibility within the heterosexual matrix and to neurocultural schemas privileging cognitive function. Reiterations of masculine norms (reason, agency, sexual performance) can sustain recognition for men, often with partners’ active support, but may marginalise women’s desires. Conversely, cultural tropes of the "strange," child-like, or animalistic person with dementia produce unrecognisability that de-genders the individual and destabilises partners’ gendered self-understandings. The novel illustrates an alternative worldmaking in which recognition is grounded in affective touch, gaze, and mutual care, not memory or binary gender, suggesting that queer orientations and prior identifications with Othered positions can enable recognition outside dominant schemas. These insights urge dementia research and practice to account for gender performativity, the masculinist nature of neuroculture, and the potential of queer/trans narratives to expand the possibilities of recognisability and ethical recognition in care.

The paper advances understanding of how gender structures recognition of subjectivity in dementia and how dementia can disrupt gender performativity. It shows: (1) gender reiterations (especially masculinity) may help sustain subjectivity; (2) cultural tropes casting people with dementia as strangers, children, or animals render them unintelligible and unrecognisable as gendered subjects, affecting both persons with dementia and partners; (3) queer/trans narratives (Minns du?) demonstrate recognition beyond cognitive memory and binary gender through affect, touch, and gaze. Future research should examine how dementia troubles neuroculture as a masculinist culture; explore dementia as biographical disruption intertwined with gendered biographies; attend to whose life courses are recognised in care; and further engage queer/trans perspectives to map forms of recognition not dependent on cognitive function or heterosexual matrices. The author calls for investigating how affective touch can (re)configure gendered subjectivities in dementia.

• Sample and focus: Interview narratives are from heterosexual couples; voices of female partners (without dementia) are more pronounced, which may risk reproducing infantilising or dehumanising metaphors and underrepresenting agency of persons with dementia.
• Generalisability: Qualitative, narrative-based analysis with illustrative cases; findings are context-specific (Sweden) and not statistically generalisable.
• Intersectionality scope: While age and class are noted, intersections with race/ethnicity and other axes are not deeply examined.
• Data access: Due to sensitivity and anonymisation challenges, interview datasets are not publicly available, limiting external verification.
• Method mix: Combining research interviews with a literary autobiographical novel provides rich contrast but blends genres, which may complicate delimitation between empirical and literary insights.