This study aims to explore articulations of gender identity, sexuality, and LGBTI perspectives in national as well as local dementia care policies and guidelines in Sweden. The analysis of the documents is influenced by Bacchi's WPR-approach. The analysis illustrates how there is a general silence on gender identity, sexuality, and LGBTI perspectives in policy. LGBTI perspectives tend to be addressed separately from people with dementia and most often present as potential grounds for discrimination. LGBTI people with dementia appear to be non-existent, and gender identity and sexuality irrelevant to dementia care and person-centered approaches, and by extension irrelevant to personhood.

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.

Lesbian, gay, bisexual, trans and queer (LGBTQ) people make up a considerable proportion of those in need of formal dementia care. Yet sexuality and gender identity have received little attention in dementia care research. Using a discursive approach, this article explores how dementia care workers discuss and reflect on dementia, gender identity, sexuality and caring for LGBTQ people with dementia. The article is based on a focus group study with dementia care workers in Sweden, primarily nurses and nurse assistants. The findings point to pervasive heteronormativity in everyday care practice; non-normative sexualities and gender nonconformity were primarily deemed invisible but also sometimes questioned as "fabulations" or "fantasies". The invisibility of LGBTQ people was discursively framed as a result of generational belonging: people with dementia belonged to generations who were assumed to be closeted. Gender identity and sexuality were also framed as sensitive issues that were difficult to address with people with cognitive conditions. Dementia was understood as bringing out the true sexual or gendered self, but also as causing confusion and inauthentic expressions of gender and sexuality. In conclusion, existing discursive framings locate problems of heteronormativity outside of care practice and risk leading to inaction; more direct challenges to heteronormativity are needed in dementia care.

This article explores imaginings of transgender ageing, and more specifically visions of transfeminine ageing futures, through an analysis of the auto-fictional novel Q by Swedish author Fredrik Ekelund. The novel tells the story of Fredrik, who comes out as transvestite at the age of 60, and subsequently struggles to come to terms with and explore their transfeminine identity as Marisol. Overall, cultural representations of lesbian, gay, bisexual, transgender and queer ageing are rare, and often tell tales of misery. As such, Q is a unique example of a complex and relatively positive narrative of transgender ageing. On the one hand, transgender ageing is portrayed as a potential escape from both time and growing old, a form of “rebirth”. On the other hand, failure emerges as a constant threat, including both the failure to perform age-appropriate femininity and failure in the sense of becoming stuck with self-loathing and shame. The protagonist’s struggles to age successfully become intimately connected with pride and standing up for oneself, struggles that are in turn bound to homonationalist discourses of Scandinavian progressiveness and LGBT exceptionalism. 

This chapter introduces critical dementia studies and gives a brief overview of the chapters and the thinking behind the structure of the volume. The introduction discusses the timeliness of critical dementia studies and the impetus behind the volume. Dementia is commonly understood as a disease category, ahistorical and value-free. Critical dementia studies, however, approaches dementia as a socially produced, political category, open to transformation and social change. Overall, critical dementia studies encompasses a diverse set of approaches that problematise, defamiliarise, denaturalise and destabilise common assumptions and orthodoxies in dementia research, policy and practice.

In this chapter we set out certain guiding co-ordinates for future critical methodologies for dementia studies and appraise existing approaches through a critical lens. The chapter brings into dialogue the work of two critical commentators and considers the implications of their work for dementia studies. The first, Alison Kafer, has outlined an integrative approach that marries feminist, queer and crip perspectives to propose a political-relational framing of illness and disability. The second, Patti Lather, a feminist ethnographer, has called for a different kind of ethnography, one that works in the ruins of confident social sciences and that embraces uncertainty and unknowing as methodological strengths. We focus particularly upon word-based and spoken methods, raising questions about the status of this type of research data and how it is handled and subsequently communicated. In particular, we seek to disrupt and open to question common assumptions, routines and unmarked aspects of the research process in dementia scholarship. Drawing upon arguments and insights developed in the course of this book, our discussion leads to a call for dementia researchers to bring ourselves closer in to the experiences of people living with dementia while questioning and distancing ourselves from notions of dementia as a fixed and stable category.

This chapter engages in critical dialogues between dementia studies and feminist scholarship. More specifically, the chapter explores how feminist studies can be useful for thinking and rethinking dementia and difference. The chapter engages with two feminist genealogies: feminist difference theory and feminist standpoint theory. Dementia has frequently been conceptualised in terms of negative difference as loss and deterioration, in particular in bio-medical discourse. More recent discourses have in contrast sought to underscore the sameness and normality of people with dementia, but this approach also functions to reinstate people with dementia into cognonormative Western modernist ideals of activity, agency and autonomy. Feminist difference theorists, however, provide ways of thinking affirmative difference. This approach to difference is neither a recourse to pathological difference nor to assimilationist sameness, but enables ways of thinking dementia as lived and embodied difference. The second approach to difference, feminist standpoint theory, concerns the different positionalities of people with dementia. In this argument, people with dementia, in particular those experiencing multiple forms of oppression, are understood as holding epistemic privilege – a particular knowledge of the oppressions of cognitive ableism. The chapter proposes a ‘“demented” standpoint’ as a way of approaching the different and unique knowledge of people with dementia and discusses further how this requires radical rethinking of methodologies in dementia studies.

New sexual scripts on later life are emerging, discourses on “sexy oldies” challenge pervasive discourses on asexual old age. Still, sexuality among people with dementia, who are generally older, is rarely affirmed. Research on sexuality and dementia is, moreover, dominated by biomedical accounts that regard sexual and intimate behaviours as expressions of pathology. However, sexuality and intimacy could be significant aspects of later life, also when living with dementia. This qualitative study explores experiences of sexuality and intimacy among heterosexual couples where one partner was diagnosed with Alzheimer’s disease. Interviews were conducted with seven couples, aged 55–87, and both the person with the dementia diagnosis and their partner participated. The findings point to a diversity of experiences, with differences between the older and younger couples. The older couples experienced changes more as a result of embodied ageing, and sexuality and intimacy were experienced as sources of pleasure, comfort and recognition. The younger couples understood changes more as caused by Alzheimer’s disease and experienced a greater loss of intimacy and desire. The study shows how experiences of sexuality and intimacy when living with dementia are shaped by varying sexual scripts and expectations of health in different parts of the life course.