“We Have to Advocate so Hard for Ourselves and Our People”: Caring for a Trans or Non-Binary Older Adult with Dementia

Abstract

This article reports on empirical findings from a Canadian study examining the experiences of carers who support a trans or non-binary person with dementia. Using a trans-affirmative, critical disability, anti-ageist, and intersectional approach, these findings fill an important gap in the literature. The narrative interviews with four participants reveal that there are unique features to caring for a trans or non-binary person with dementia, namely, becoming a carer due to marginalized status, performing care tasks linked to gender identity and expression, and managing multiple and specific forms of discrimination. Three of the four carers were themselves trans or non-binary, pointing to pathways into care that are linked to a shared marginalized identity. In addition to the traditional tasks of dementia care, the participants engaged in gender-related tasks such as gendered body care, sustaining the gendered self, and advocacy and future planning linked to gender identity and expression. The carers also had to manage numerous forms of cisgenderist, ageist, and cogniticist discrimination and violence directed at both the trans or non-binary person with dementia and themselves. This discrimination dramatically reduced care options, placing more responsibility on the shoulders of carers. The article ends with practical recommendations.

Keywords:

• Trans people
• non-binary people
• aging
• dementia
• caregiving
• discrimination

The quote in the title of this article was articulated by Jesse¹, a 34-year-old who self-identifies as transmasculine, non-binary, and queer, and who is a carer to David, a trans man with dementia. Jesse’s statement encapsulates the reality of the carers to whom we spoke in the context of our Canadian research on trans and non-binary older adults with dementia and their support networks. In addition to carrying out a multitude of daily tasks similar to those performed by many people caring for someone with dementia, the carers we met were also fighting particular forms of discrimination and oppression within a health and social service system that is, for the most part, unprepared to meet the needs of trans or non-binary people with dementia. It is these carers’ lived experiences that lie at the heart of this article.

We define a carer as someone who provides regular support to a friend, acquaintance, or family member (whether biological or chosen family) without being paid. We adopt a perspective of care that is multi-faceted rather than unidirectional, meaning that we perceive care as mutual and interdependent rather than provided only from one person to another. We define dementia in a similarly broad manner, as a term that encompasses all types of memory-related cognitive disabilities such as mild cognitive impairment, Alzheimer’s disease, vascular dementia, and Lewy Body dementia. Finally, we also use the expression trans and non-binary identities/people as an umbrella expression that encompasses a large variety of gender identities, including transgender, non-binary, agender, gender non-conforming or genderqueer people, or anyone who does not exclusively identify with their sex/gender assigned at birth.

Canada’s population, like many countries in the global North, is aging rapidly, with one of the fastest growing segments being people above the age of 85 (Statistics Canada, 2022a). In parallel, the number of people with dementia is also rising rapidly, with one million Canadians expected to have dementia by 2030 and 1.7 million by 2050, up from approximately 600,000 currently (Alzheimer Society of Canada, 2022). The rapid rise of dementia means that an increasing number of people will require regular care and support. In fact, the Alzheimer Society of Canada (2022) estimates that the number of carers needed to support people with dementia will triple between now and 2050. Despite the growing emphasis on care needs, one of the areas of care provision that has been largely ignored in policy and academic scholarship to date is the care of trans and non-binary people with dementia. However, for the first time in history, there exists a growing cohort of trans and non-binary older adults − including those who transitioned earlier in life and are aging in their affirmed identity, as well as those who decided to transition in older adulthood—whose numbers will continue to rise due to population aging, increased access to hormones and surgeries, major legal changes on trans issues (Namaste & Tourki, 2020; Singer, 2020) and greater social acceptance of trans and non-binary people.² Many of these trans and non-binary older adults might also acquire dementia, and might also require care.

In this article, we report on the findings from our interviews with both trans and non-binary older adults with dementia and their carers, focusing on the experiences of the latter.³ We demonstrate that there are unique features to caring for a trans or non-binary older adult and that the experiences of these carers should not be subsumed under the larger experience of carers in general, or even of those who are caring for lesbian, gay, bisexual or queer (LGBQ+) older adults. Indeed, despite numerous advantages to include the “T” in the LGBTQ + umbrella, trans scholarship has shown that trans and non-binary people live specific experiences that cannot be subsumed in analyses that focus more on sexuality rather than gender identity, or that often tokenize the “T” without properly addressing trans and non-binary issues (Ansara, 2015; Baril et al., 2020; Kia et al., 2021; Namaste, 2000). There exists, therefore, valid reasons to focus on the unique experiences of carers of trans or non-binary adults with dementia instead of looking at the experiences of carers for LGBTQ + older adults with dementia. To do so, this article is divided into three main parts. In the first part, we begin by outlining current scholarship, illustrating that there is a significant gap when it comes to understanding the lived experiences of carers of trans and non-binary older adults with dementia, a gap that this article aims in part to fill. We then outline, in the second part of the article, the methodology that guided the project, as well as provide a description of each of the carer participants. We then turn, in the third part, to the findings and discussion, which we divide into three main themes pertaining to the unique aspects of caring for a trans or non-binary person with dementia: 1) becoming a carer due to marginalized status; 2) engaging in care tasks linked to gender identity and expression and; 3) confronting multiple forms of specific discrimination related to gender identity and expression. We conclude by offering recommendations from participants.

A lack of first-hand carer accounts: Literature review

There is a plethora of literature regarding the realities of family and friend carers who are supporting a cisgender⁴ older adult with dementia. In the fields of dementia studies and gerontology there has been significant emphasis on carer experiences in the past two decades, with research related to the emotional, physical, social, and relational impacts, to name only a few (Gallagher-Thompson & Power, 1997; Hwang et al., 2017; Silverman et al., 2020). Yet notoriously absent is research investigating the lived experiences of carers who are supporting a trans or non-binary person with dementia. We have seen in the past ten to twenty years small pockets of research looking at LGBTQ + care more broadly, in some cases specific to the context of dementia. However, as previously mentioned, this scholarship, while including the ‘T’ in the acronym LGBTQ+, often subsumes non-binary or trans-specific realities into sexual orientation realities, focusing primarily on sexuality rather than gender identity or gender expression.

Despite the reduced (or entirely absent) emphasis on the ‘T’, as well as the reduced emphasis on dementia care specifically, some of the findings from this broader research regarding LGBTQ + older adults are instructive for pointing to important themes related to the care of marginalized individuals (King, 2019). For example, in one of the first studies to examine the experiences of the carers of gay and lesbian older adults, Brotman et al. (2007) found that most of these carers had experienced discrimination (often discrimination by association as many of the carers were themselves not gay or lesbian), and most feared future discrimination and mistreatment by healthcare providers, leading them to use fewer services and hence take on more burden themselves. Numerous other studies echo the fact that LGBTQ + older adults and their carers experience discrimination in the health and social service system, and fear possible future discrimination, especially in long-term care (Croghan et al., 2014; Fredriksen-Goldsen, 2012; Hash & Mankowski, 2017; Hughes & Kentlyn, 2011; Kia et al., 2016; Le Berre & Vedel, 2020; Shiu et al., 2016; Stinchcombe et al., 2017; Wilson et al., 2018). Many LGBTQ + older adults feel uncomfortable disclosing their status to practitioners for fear of reprisals (Toze et al., 2020), thus leading some who require formal services to go back in the closet (Almack, 2019; Wilson et al., 2018). LGBTQ + people’s fear of discrimination, based on real traumatic experiences, is in part what leads to a higher prevalence of informal caregiving in LGBTQ + communities (Boehmer et al., 2019; Cantor et al., 2004; Hughes & Kentlyn, 2011), as they turn to trusted networks for support rather than to the formal system. Since many LGBTQ + people are isolated from their family of origin (often as a result of ruptures with biological family, as well as having fewer children), in many cases this trusted support network consists of chosen family (Cannon et al., 2017; Croghan et al., 2014; Le Berre & Vedel, 2020). Yet chosen family carers face additional challenges that family of origin carers do not face, such as legal issues due to their lack of biological links (Concannon, 2007; Duffy & Healy, 2014; Fredriksen-Goldsen, 2012; Hash & Mankowski, 2017; Shiu et al., 2016; Stinchcombe et al., 2017). In the small amount of scholarship that has focused on LGBTQ + individuals living with dementia specifically, all the same concerns and realities are present, yet with increased stigma and vulnerability due to cognitive disability (Harper, 2019; King, 2016; McGovern, 2014; Newman, 2016; Price, 2016).

In the same way that dementia can increase the risk of stigma and discrimination, it was found that trans and non-binary older adults are even more vulnerable than LGBQ + older adults (Almack, 2019). The risk of discrimination was also found to be higher than among lesbian, gay, bisexual, and queer older adults, especially when it comes to long-term care (Cartwright et al., 2012; Knauer, 2016; Porter et al., 2016). Furthermore, for many trans and non-binary people, managing discrimination must be done with very little support, and in conjunction with a simultaneous struggle for basic survival due to the additional injustices that often accompany being trans or non-binary, such as lower socio-economic status (Bailey, 2012; de Vries et al., 2019; Porter et al., 2016). Indeed, scholarship focused specifically on trans and aging are replete with accounts of increased vulnerability (Bailey, 2012; Siverskog, 2014; Witten, 2016). Like older adults who identify as being LGBQ+, trans or non-binary older adults report a similar reticence to access formal health and social services due to real and/or anticipated fears of discrimination (Adan et al., 2020; Ansara, 2015; Auldridge et al., 2012; Benbow et al., 2021; Ducheny et al., 2019; Siverskog, 2014; Willis et al., 2020); yet for trans or non-binary older adults this goes one step further into the fear of bodily and intimate care, as well as fear of misgendering. When it comes to bodily care, trans and non-binary older adults cannot go back in the closet or choose to not disclose their identity; their gender expression, their pronouns, or their bodies speak for themselves, either with scars from surgeries, or with body parts that are seen as ‘non-normative’ from a dominant perspective. Whether in the context of long-term care or home care, needing (bodily) care from someone who is potentially cisgenderist⁵ is a deep fear for many trans and non-binary people (Auldridge et al., 2012; Bishop & Westwood, 2019; Boyd, 2019; Steadman, 2019; Witten, 2017). Such fears of discrimination lead to parallel concerns about dementia, as many trans and non-binary people express, even before reaching older adulthood, that they fear dementia because it can lead to losing the ability to care for, and advocate for, oneself (Bishop & Westwood, 2019; Cook-Daniels & Munson, 2010; Henry et al., 2020; Witten, 2016). In addition to the fear of needing to rely on possibly cisgenderist and cisnormative⁶ formal services, trans and non-binary older adults often have few choices, as well as fewer informal carers to whom they can turn for support (Boyd, 2019; Cook-Daniels & Munson, 2010; Finkenauer et al., 2012; Latham & Barrett, 2015; Pang et al., 2019; Siverskog, 2014; Toze et al., 2021). Paradoxically, this marginalized population, who are among those requiring the most support in older age, especially when it comes to dementia (Cousins et al., 2020), is instead among the most isolated.

Despite the well-documented mistreatments and fears about care, there are no studies that have examined the lived experiences of trans or non-binary people with dementia, nor their carers. Even among the studies focusing on LGBTQ + older adults with dementia and their carers, the specific experience of trans or non-binary older adults with dementia or their carers remains absent. For example, despite its invaluable results, one recent study that held focus groups and interviews with LGBTQ + older adults with dementia and their carers did not in fact have any carers of trans or non-binary people among its participants, nor any trans or non-binary people with dementia themselves (Flanagan & Pang, 2022). Similarly, a recent scoping review on the experiences of LGBTQ + older adults with dementia and their carers (Smith et al., 2022) stated that they found only one empirical study that included trans people or those who care for them. Upon closer reading, the study mentioned in Smith et al.’s article did not in fact have any trans or non-binary people with dementia or their carers among their participants; rather, the researchers spoke to a service provider who recounted one case (Barrett et al., 2015, 2016). Despite the important results and positive outcomes of these studies, this absence of trans or non-binary people with dementia and their carers is quite representative of the relative absence or under-theorization of trans and non-binary realities in LGBTQ + aging literature. Although it may seem at first glance that there are projects that have conducted interviews with trans or non-binary older adults with dementia and/or their carers, a closer reading reveals that in fact no interviews were conducted. This is the gap that this article aims to fill, by providing first-hand accounts of the lived experiences of those caring for a trans older adult with dementia. This is the first empirical study at the international level, in either English or French, to focus entirely on the testimonials of trans and non-binary older adults with dementia and their carers.

Eliciting carers’ narratives: Project methodology

The research question guiding our project was: What are the experiences of trans and non-binary older adults with dementia and their support networks? We sought to understand and document, from the perspective of trans and non-binary older adults with dementia and their carers, how the intersections of gender identity, cognitive disability and age are experienced in everyday life, as well as their accompanying oppressions, namely cisgenderism, cogniticism⁷, and ageism. The research was guided by several critical theoretical perspectives that shaped our approach to gender identity, disability, and age. For example, we adopted a trans-affirmative approach to gender identity that emphasizes self-determination for trans individuals and allows room for fluidity, change, and self-expression, even in the context of cognitive disability (Baril & Silverman, 2019; Hunter et al., 2016). Similarly, we adopted a critical disability and crip positive (Kafer, 2013; McRuer, 2006) perspective of dementia that emphasizes self-determination and agency for people with cognitive disabilities (Baldwin & Greason, 2016; Baril & Silverman, 2019; Bartlett & O’Connor, 2010; Silverman & Baril, 2021; Thomas & Milligan, 2018), in contrast to normative narratives that associate dementia with decline and loss. Mobilizing critical gerontology perspectives, we also adopted an anti-ageist approach that similarly underscores the agency and abilities of older adults (Calasanti, 2005; Grenier, 2012; Katz, 1996; Toze, 2019). Finally, we employed anti-oppressive and intersectional approaches that promote social justice and that aim to understand the interlocking forms of oppression experienced by marginalized communities. Theorized originally by Black feminists (Crenshaw, 1989; Hill Collins, 2000; Hill Collins & Bilge, 2016), intersectionality aims to examine identity components as co-constituted, and to understand systems of oppression as interlocking. Applied to trans and non-binary people living with dementia, an intersectional lens allows us to gain a more comprehensive perspective of the ways in which cisgenderism, cogniticism, and ageism, among other systems of oppression, interact in their daily life.⁸

Complementary to the theoretical approaches outlined above, we used a narrative approach to interviewing that is favorable for eliciting the lived experiences of participants by focusing on personal stories and important life transitions (Creswell & Poth, 2018; Padgett, 2018). This approach is relevant in the context of research with marginalized populations as it gives participants voice, validates their realities, and empowers them to maintain narrative agency rather than being “narratively dispossessed,” as can often occur with marginalized groups when they are not given space to express their experiences (Baldwin & Bradford Dementia Group, 2008, p. 223). Following the lead of Hydén and Antelius (2011) and Hydén (2013) who argue for an expansion of what narratives should entail for people with communication disabilities, we adopted an approach to interviewing that supported various forms of storytelling, including those that are non-linear and do not follow normative narrative arcs.

Further to adopting an expanded view of narrative interviewing, we also adapted several methodological procedures to meet the needs of trans and non-binary older adults with dementia, utilizing what are thought to be best practices when conducting research with people with dementia (Clarke & Keady, 2002; Hubbard et al., 2003; McKillop & Wilkinson, 2004; Novek & Wilkinson, 2017; Nygard, 2006). For example, when interviewing trans or non-binary participants living with dementia, we favored shorter yet more frequent interviews, offered at flexible times, and with the possibility to have a trusted person present during the interview. We also favored a verbal assent instead of written consent. In addition to obtaining initial consent, we engaged in ongoing consent by checking in regularly with participants and being attentive to their non-verbal cues (Dewing, 2002). Knowing that trans and non-binary participants, and those who care for them, may have experienced various traumas, we were also careful to repeat that they could stop the interview at any point, and that they could choose to skip any questions that might illicit discomfort.

Recruiting trans and non-binary older adults with dementia and their carers proved immensely difficult, and it seems we were not alone in experiencing this difficulty. For example, Flanagan and Pang (2022), even with the resources of two national organizations, Egale Canada and the National Institute on Aging, and after a multi-pronged cross-Canada recruitment, were unable to recruit any trans or non-binary participants for their study on the experiences of 2SLGBTQI people living with dementia, nor any carers of trans or non-binary people with dementia. We suspect that the difficulty in recruiting trans participants with dementia and their carers is due to several factors, including the invisibility of this population within traditional organizations, as well as increased isolation. In the case of our project there was also the additional challenge of recruiting during the Covid-19 pandemic, as we discuss further below. With the help of two research assistants, we embarked on a one-year (August 2021–August 2022), Canada-wide recruitment in both English and French. In English, we reached out to 879 organizations across the country specializing in LGBTQ + services (community organizations, health centers, online groups, etc.) and 555 aging and/or dementia-related organizations (Alzheimer societies, retirement groups, retirement homes, etc.), for a total of 1434 organizations. In French, we reached out to 62 organizations specializing in LGBTQ + services and 129 aging and/or dementia-related organizations, for a total of 191 organizations. In sum, in both languages and in both types of organizations (LGBTQ + issues and aging/dementia issues), we reached out to 1625 organizations. We received significantly more responses from the LGBTQ + organizations, many of whom shared the project information via email lists, websites, and social media platforms. The response from aging and/or dementia organizations was notably less enthusiastic, with many organizations stating that they did not have any members who fit the criteria, revealing significant unconscious cisnormative bias.

To further target LGBTQ + organizations, we obtained additional permission from The University of Ottawa Research Ethics Board (the institution that gave us initial ethics certification) to expand the research internationally into the United States and France, where we targeted 25 and 50 LGBTQ + key organizations respectively. Ultimately, we did not recruit any participants outside Canada, indicating the importance of trust-based relationships and rapport building in various national contexts when it comes to the recruitment of marginalized groups. The fact that we were conducting interviews via Zoom due to Covid-19 meant that we were able to undertake this international expansion. The Zoom-based interviews also offered additional flexibility in reaching out to potential participants across Canada, meaning that interviews could occur on any date, in any region, whether urban or rural, and regardless of time zone. However, Zoom-based interviews also removed some of the alliance building that comes from meeting people face to face. This relationship-building is especially important in the context of research with marginalized communities, and we had originally intended to travel anywhere in Canada to meet participants. The pandemic not only altered those plans, but it made an already difficult recruitment process even more so, as older adults in Canada and around the world, and those who offer them services and care, were among the most affected by the pandemic. Many died during the pandemic, many were preoccupied with basic survival, and many were unreachable by electronic means only. At the time of writing, after one year of active recruitment, we have four carer participants and two trans participants with dementia. Although this sample is small, we believe these participants’ narratives nonetheless offer a significant contribution; this project remains, to our knowledge, the only empirical study at the international level, in either English or French, to interview the carers of trans and non-binary people with dementia.

To participate, the carers had to be at least 18 years of age and be providing regular support (at least weekly) to a person identifying as trans or non-binary and living with any type and stage of dementia. We conducted one interview with each of the carer participants, of approximately one and a half hours in length. We also asked participants to complete a socio-demographic questionnaire. The Zoom-based interviews were conducted by both researchers, the two authors of this article. Having both researchers present, one of whom identifies as trans and was open about this fact with participants, was an important value to which we held throughout the project, as it helped build alliances and trust with participants. The interviews were audio-recorded and professionally transcribed. We analyzed the data using manual coding, following thematic analysis procedures (Paillé & Mucchielli, 2012) consisting of winnowing codes into preliminary concepts and then themes. The following is a table that outlines some basic socio-demographic information for the four carers in the study. This does not represent the entirety of the questions asked in the socio-demographic questionnaire, but simply the most relevant aspects for understanding these carers’ situations. From this table, some of the limitations of this study are immediately apparent. In addition to the small sample size, there are no carer participants who identify as transfeminine, and only one who identifies as racialized. Further research would be needed to understand the lived experiences of transfeminine carers as well as racialized carers who are supporting a trans or non-binary older adult with dementia.

Table of participants⁹.

Name/pseudonym and pronouns	Jesse (they/them)	Nancy (she/her)	Lou (they/them)	Dan (he/him)
Age	34	74	42	Early 30 s
Self-identified gender	Transmasculine / non-binary	Cisgender woman	Non-binary	Transmasculine
Self-identified sexual orientation	Queer	Heterosexual	Queer	Queer
Self-identified as racialized or visible minority	No	No	Yes	No
Geographic location	Rural Canada	Urban Canada	Urban Canada	Rural Canada
Caring for	Chosen family member who is trans masculine and in his late 40 s, with early form of dementia due to multiple traumatic brain injuries	Partner who is trans masculine and 75 years-old, with late-stage Lewy-Body dementia	Parent who is non-binary and 83 years-old, with early-stage dementia	Three people (neighbor; chosen family) with various types of dementia

A variety of carer situations: Participant portraits

What follows are short portraits of the carer participants. Consistent with our narrative approach to interviewing, elucidating each participant’s care situation is a way of bringing their stories to the foreground. These portraits illustrate the diversity of care situations in this small sample.

Jesse

Thirty-four-year-old Jesse lives in a rural area of Eastern Canada, and identifies as both transmasculine and non-binary, using they/them pronouns. Over the past two and a half years, they have been one of the primary carers for David, a trans man in his forties¹⁰ who acquired early onset dementia due to multiple traumatic brain injuries. David, who transitioned approximately ten years ago, lives in a home with numerous people, including Jesse’s partner, who is David’s chosen family sister, her children, and a few roommates. Many of the members of this household identify as trans or non-binary. Although Jesse does not live in this household, and in fact lives a few hours away, they are currently offering assistance to David through videoconference while their partner is working. Jesse is unemployed and provides support to David on an almost daily basis, reminding him to eat and to take his medication, helping with his routines, explaining how to take his testosterone, providing emotional support, etc. Jesse also helps their partner with advocacy for David. For example, together they have advocated for David to obtain permission to have gender-affirming surgery. David, despite having a receptive general practitioner, has repeatedly been denied top surgery because of medical gatekeeping; specialists have asserted that his dementia and other mental health diagnoses have rendered him unable to make such a health decision (we discuss this further in the following section). Jesse and their partner have been fighting against this sanism/cogniticism and cisgenderism, knowing that David has expressed a consistent and unwavering masculine gender identity throughout the past ten years. At the time of the interview, David had finally obtained permission for the surgery. Jesse and their partner are giving an enormous amount of their time, energy, financial resources, and emotion to care for David; yet Jesse is also quick to point out that they receive a lot in return, and they feel privileged to have David in their life.

Nancy

Nancy is a 74-year-old cisgender woman who is caring for her husband, Victor, her trans masculine partner for 51 years. Approximately ten years ago, Victor had two strokes that led to mild cognitive impairment. His symptoms worsened over time, and in 2015 he was diagnosed with vascular dementia. This diagnosis was since revised to Lewy Body dementia. As Victor’s condition changed, the couple, who live in central Canada, moved from the countryside to an urban area to be closer to medical specialists. In addition to memory loss and disorientation, Victor also suffered from vivid hallucinations that have now diminished. Although the hallucinations have improved, Victor is in the advanced stages of dementia and is unable to undertake most daily tasks. Nancy must help him with his medications, testosterone, food, clothing, and bodily care, in addition to taking him to appointments, cleaning, cooking, managing the finances, providing emotional support, adapting the house to his needs, and providing continual supervision. Last year, Victor spent a few months in a long-term care facility. This proved to be an extremely negative experience due to multiple forms of discrimination that we discuss in detail later in the article; Victor has since returned home. The couple has started accepting some outside help because Nancy is exhausted. Yet the help they receive is minimal—only three hours per week. Even this amount of outside help is a big step for the couple, who are wary of trusting workers, especially when it comes to intimate care. The couple has what Nancy describes as a fusional relationship, relying only on each other for over 50 years. Victor underwent a medical transition in the 1970s, when he was in his twenties, and since then he has not been ‘out’ as a trans man. They have preferred to live a quiet life far removed from LGBTQ + community. They were, to some extent, forced out of the closet when Victor began requiring increasing care, services, and medical intervention for his dementia.

Lou

Lou, who is 42 years-old and identifies as non-binary, is a carer to their 83-year-old parent Jo who also identifies as non-binary. Approximately three years ago, Jo had a bad fall that necessitated medical intervention and a long recuperation. Since this traumatic event, Jo has exhibited symptoms of mild dementia, and these have interacted with their long-standing mental health issues. Jo is primarily in need of emotional support, reminders, help arranging appointments, and some assistance with certain tasks in the house. Lou is the person who provides all this care, as they have been living with their parent since the fall occurred. The two were initially living in a small condo in an urban area of central Canada, but they are now living in a house that requires adaptations to accommodate Jo’s restrained mobility. Lou is quite preoccupied with adapting the home to ensure that Jo will not experience another fall. Lou explained that their parent came out as non-binary ten years ago. Prior to their fall, Jo talked about initiating a medical transition, but it never became a priority. Jo has since decided not to move forward with any sort of medical transition, as they feel they already have too many interactions with the medical system. Generally, the professionals with whom they have interacted have been dismissive of their gender identity, often misgendering them and erasing this aspect of their identity. Jo has chosen not to react to these forms of discrimination, as their priority is the medical care they are receiving regarding their physical and cognitive health. Nonetheless, Lou tries to play the role of advocate for their parent and helps maintain their external appearance by cutting their hair and helping them buy clothes. Lou (and their parent) identifies as racialized, and part of Lou’s advocacy for their parent involves being a linguistic and cultural translator during medical appointments. While Lou did not discuss further the intersections between race, gender, age, and (dis)ability (and thus we do not address this as an axis of analysis in our findings), the fact that Lou must engage in increased advocacy due to language barriers points to racist discrimination and anglonormative experiences (Baril, 2016, 2017), most likely interlocking with ageism, cogniticism, and cisgenderism.

Dan

Dan is a trans man in his early thirties living in a rural area of Eastern Canada. He is connected to a tight-knit queer, trans and non-binary community in his area, a community of people who rely on each other extensively for support. It is through this community that Dan found himself, over the past few years, taking on the role of carer to three trans people with dementia. Being unemployed, Dan has time to devote to helping these members of his community. The first person for whom he provided care was a trans woman in her eighties named Denise. Dan met Denise and her partner almost ten years ago, and as Denise’s dementia progressed it became clear that the couple needed additional support. Over time, Dan provided an increasing amount of companionship, help in the house, and help with meals. Denise passed away a few months prior to our interview with Dan. In addition to Denise, a few years ago Dan also started helping with the care of David, the same David for whom Jesse is caring. Dan and Jesse consider each other chosen family, and because Dan lives in the same area as David he can help with hands-on care, such as assisting with meals, medications, and hormones, offering reminders about daily tasks, and assisting with advocacy. More recently, one of Dan’s neighbors, Ben, a trans man in his fifties, developed rapid early-onset dementia. Ben and his wife, after facing numerous discriminatory experiences, only trust someone trans to provide help with daily tasks and bodily care and thus asked Dan if he could assist them. Dan now provides regular support in the form of food preparation, help with showering and dressing, and emotional support.

The unique aspects of caring for a trans or non-binary person with dementia: Findings and discussion¹¹

In many ways, the stories of Jesse, Nancy, Lou, and Dan resemble what has been documented about the care for cisgender older adults with dementia. They talk of impacts to multiple spheres of life, of worries and anticipatory anxieties, of juggling numerous tasks, and of wanting to protect the person with dementia. Rather than repeating these similarities, we have chosen to focus on what emerged in the participants’ stories as unique regarding the care for a trans or non-binary person with dementia. We have identified three main themes that stand out as distinctive, and each of these themes contains multiple angles. The first theme pertains to how and why the carers in the sample entered their caregiving role; the second pertains to the gender-specific tasks that are a central feature of their caregiving role; and the third pertains to the numerous and intersecting forms of discrimination with which they must contend.

Becoming a carer due to marginalized status

Unlike Lou, who is caring for a parent, and Nancy, who is caring for a partner, two common care configurations, Jesse and Dan arrived at their caregiving roles through non-normative pathways. Their stories have heuristic value for helping us envision aspects of caregiver journeys that have received less attention to date. In some ways, their stories resemble what we know of how many people arrive in caregiving roles (regarding all types of care, not only dementia) within LGBQ + communities, namely through chosen family bonds and community connections (Boyd, 2019; Cannon et al., 2017; Croghan et al., 2014; Le Berre & Vedel, 2020). For example, Jesse explained that their links with David are the result of chosen family connections: “I’m caring for my partner’s brother, a chosen family, so they’re not biologically related. So, when we started getting to know one another, I kind of fell into that role organically.”¹² Similarly, Dan explained that he arrived at this unanticipated caregiving role through community connections:

I suppose, you know, it was the community connections, really at that grassroots level that brought me to where I am now. Did I think I’d be, you know, spending time caring for folks, especially, you know, older trans folks with dementia? No. Absolutely not. That was never something that I even anticipated. But here we are.

These statements echo what Flanagan and Pang (2022, p. 7) discovered through their interviews with carers for older adults with dementia in LGBQ + communities, namely that “[p]eople can become primary unpaid carers for 2SLGBTQI PLWD [people living with dementia] through a wide variety of pathways and from a range of prior positions, including close preexisting relationships (e.g., as spouses, close family members, and close friends) and more distant prior relationships (e.g., acquaintance, fellow community members).” Yet the stories of Jesse and Dan complexify this portrait and take us beyond the links of proximity or community. Jesse and Dan have, in part, found themselves in caregiving roles because of their own non-binaryness or transness. For example, when Dan discussed how he came to be a carer for his neighbor, Ben, he stated: “Um, in the case of my neighbor, it was very much, you are the only other trans person we know. You know, you are the token trans person.” Dan furthered this explanation with the following statement:

I don’t necessarily feel skilled or confident in my ability to provide as much care as I’m doing, but will I do it, because I am somebody who is reliable and they can trust, and somebody who has lived trans experience, absolutely. Because if not me, who else? There isn’t a lot of trans people around here.

Similarly, Jesse explained that their own transness is very much front and center in the role they play in caring for David, and that their own gender identity makes them, in some ways, “qualified” for this role. This perspective is evident in the following two statements in which Jesse talks about advocating for David to receive his gender-affirming surgery:

Um, but as a trans person, I can kind of step in and try to have conversations with doctors, and, you know, see if that’s helpful, and again, thankfully, now we’re at the place where surgery is approved, but it took such a long time.

I can provide an advocacy because of my experiences, because I lived in a small town and you know, I’ve, I’ve had a fight tooth and nail for, for everything…in every bit of my care, across the board.

The stories of Jesse and Dan point to the reality that some carers may find themselves in positions of care for reasons that go beyond relational or geographic proximity and pertain instead to their own gender identity or expression. Even in the case of Jesse, who is caring for a chosen family member, their own trans status is part of what brought them into the caregiving role despite living many hours away. Although we cannot extrapolate generalizations based on the small sample in this study, the stories of Jesse and Dan point to the idea that carers of trans and non-binary older adults might have a higher likelihood of being trans or non-binary themselves. Indeed, in our very small sample, three quarters of the carers identify as trans or non-binary. We can therefore ask ourselves, what does being trans or non-binary bring to the caregiving role? Why is it important to trans and non-binary individuals in need of care that their carers are also trans or non-binary or at the very least trans allies? It appears the answer is, in part, linked to the theme of discrimination which we discuss further below. Due to many trans and non-binary people’s traumatic experiences of discrimination in multiple spheres of life, they are reticent to come out to, or to seek care from, people whom they are not convinced will understand their realities. Carers who have had first-hand experience of being trans or non-binary are seen as more trustworthy, trans-affirmative, and respectful. This is especially important when it comes to respecting identities, such as the usage of pronouns, or when it comes to particularly sensitive aspects of care such as intimate bodily care. As Dan explained: “It’s not ideal, to have people who you don’t know or you can’t trust in the healthcare profession to be so hands on, in the day to day, such an intimate, fragile… type of intimate care.” This is, in part, what led Dan to take on a caregiving role for multiple people. Dan articulated this reality in the following way: “I’ve kind of taken a lot of the trans community under my wing, as I could.” Jesse also articulated the importance of trust when it comes to caring for David:

There’s a very limited amount people that we trust, to be able to provide him what he needs, both in terms of his TBI [traumatic brain injury], dementia issue and then the being trans, you know, we have a really difficult time finding people that…[T]here’s so much discrimination and we just, we’ve had so many issues with healthcare and discrimination that…Yep, we wouldn’t even know who else to, to bring in, to help.

Dan and Jesse’s narratives can propel us toward new analyses of care, namely rethinking the pathways into care when it comes to marginalized communities. These stories reveal that in the case of care for marginalized individuals, carers may be offering support not exclusively because of relational ties, nor because of certain essential qualities (such as having care experience), nor because of geographic proximity (such as living in the same location), but because of their own marginalized status. Although chosen family and community links are important in the stories of Dan and Jesse, they alone do not paint the entire portrait of how Dan and Jesse became carers. We believe that Dan and Jesse’s stories of care invite us to think about care through an intersectional lens that brings to the foreground the theme of oppression. What oppressions have carers experienced and how does this influence their caregiving role? Furthermore, how do we ensure that the caregiving role does not marginalize carers even further?

Carers of trans and non-binary older adults with dementia are not entirely unique in being “chosen” as carers because of their marginalized status. Carers of older adults are often women who find themselves in positions of unpaid care due to complex forms of sexism, for example assumptions that they are natural care providers, or that it’s not a problem to reduce work hours because they already have lower paying jobs (Statistics Canada, 2022b). There is also some preliminary evidence that trans women may take on caring roles at even higher rates than cis women (Croghan et al., 2014), indicating that trans women are subjected to the same pressures as cis women when it comes to expectations of care, and that they may possibly experience these expectations even more strongly due to societal pressures to validate their womanhood through normative feminine acts such as caring for others.¹³ Furthermore, many marginalized populations, for example people who are racialized or trans, are often unemployed or underemployed (Adames et al., 2020; Trans Pulse Canada Team, 2020), placing them in situations in which they are more susceptible to take on the role of caring for others. While this may fulfill an important role in a family or community, it can simultaneously burden them and trap these carers in positions of precarity. In many cases, taking on the role of unpaid carer can lead to greater financial, physical, emotional, social, and relational precarity (Ho et al., 2009; Silverman, 2013; Wakabayashi & Donato, 2005; Ward-Griffin et al., 2005). In the case of trans or non-binary carers who are caring for trans or non-binary older adults, they too arrive in their caregiving roles in positions of precarity, yet their marginal status also brings something beneficial to the care situation. Their own gender identity status could help in some situations to protect the trans or non-binary older adult from exposure to further oppression and mistreatment. Although not explicitly stated as a benefit per se, the carers also made reference to some positive outcomes in their own lives, such as their sense of satisfaction at being able to give back to their community. How do we understand the interplay between this potentially beneficial aspect of marginalization, and the worrisome reality that caregiving can also accentuate and amplify carers’ precarity and vulnerability? In the spirit of work that has called for an increasing focus on caregiving and marginalized status (Brotman et al., 2021; Brotman & Ferrer, 2015), we believe these findings can lead to new reflections regarding marginalization, oppression, and care.

Engaging in care tasks linked to gender identity or expression

In many ways, the daily caregiving tasks carried out by the participants in the study resemble many of the common tasks associated with caring for cisgender older adults with dementia. For example, the following statement by Nancy articulates some of the tasks she does in a typical day to take care of her husband:

So, he needs assistance with his medication, so I give him his medication, assistance with baths and showers… I give him one every two days, unless he’s had some kind of mess, you know, if he’s sweated a lot or had an accident with his stools, well, I can give him one more. I shave him every two days, clean his glasses, everything, help him get dressed… If he gets dressed alone, well, he’ll put things on backwards.

In addition to these tasks that are an integral part of caring for people with dementia, regardless of gender (Amato et al., 2021; Lee et al., 2019; Silverman, 2021), the four carers in the study explained that they also carry out tasks that are specifically related to gender identity or expression. Carers had to help the person with dementia maintain and perform their gender expression through a variety of tasks related to multiple aspects of the gendered self. We have identified four main areas in which carers assisted the person with dementia in the maintenance of their gender identity and the performance of their gender expression: 1) sustaining the gendered self; 2) providing gendered body care; 3) advocating for the trans or non-binary person with dementia, and; 4) decision-making and future planning regarding gender identity or expression. We address each of these aspects in turn.

Sustaining the gendered self

Each of the four carers explained that they were helping the person with dementia with tasks related to gender expression, or how they present their gendered self to the world. For example, Lou explained that they helped their parent buy clothes and cut their parent’s hair the way they like it. The desired clothing and haircuts helped maintain their parent’s non-binary gender presentation. Similarly, Jesse explained that they assisted David in modifying certain gendered practices, such as shaving, so he could continue to perform them autonomously: “He’s still able to shave, but he uses an electric razor, he can’t use the disposables. You know, we’ve had to adapt some things, we had to modify some things […]” Yet there are some tasks that David is no longer able to perform without assistance, such as chest binding, and this causes him distress. Jesse explained:

Right now he is choosing not to bind, because that’s too difficult to do, and, if I’m not there, and, like if he’s not up for something, when his sister’s not around, then, there’s no one there to help him with that. So…I don’t know how much that’s impacting him, but I know again, like all that, when he realizes there’s stuff that he can’t do anymore, that just creates a whole new depressive, low episode […].

While carers for cisgender people with dementia may still have to offer support around tasks like shaving and dressing, in the case of trans or non-binary people with dementia, these aspects often contain unique importance as they are a key part of how trans and non-binary people express their gender identity to the outside world.

Providing gendered body care

In addition to helping the trans or non-binary person with dementia maintain their gendered appearance, the participants also engaged in gender-related body care. For Nancy, Jesse, and Dan, this involved helping with hormones. Dan described that, together with David’s endocrinologist, they were able to determine the easiest way for David to continue his hormones; despite this team effort, Dan explained that David still needs assistance: “If he’s not capable of doing hormone shots, then we will do those things.” Jesse, from a distance, helps remind David about his medications and testosterone: “I was taking on more, virtually especially, because Covid. So, I do everything from helping remind about medications and testosterone, to really mapping out an everyday routine.”

Nancy also helps Victor with his testosterone, yet she has additional challenges when it comes to gender-related body care. Victor has become partially incontinent, and despite wearing adult diapers, Nancy still tries to accompany him to the toilet every time he needs to urinate. Due to what Nancy and Victor characterize as an unsuccessful bottom surgery conducted in the 1970s when surgical techniques were not yet perfected, Victor never obtained the penis he wished for. However, in his state of advanced dementia, Victor believes that he has a functional penis that allows him to urinate standing up, which is not the case. Nancy interprets this as a sign of how deeply Victor’s gender identity is embedded in his mind and body, despite cognitive changes due to dementia. Nancy described how she must accompany Victor to the bathroom and explain to him each time that he cannot urinate while standing:

[I]f we let him do it, when he goes to the toilet, no matter how hard we try, he faces the toilet, he acts as if he has a penis, and if we don’t intervene, he’ll pee on the floor, he doesn’t want to understand that he doesn’t have one.

While carers for cisgender people with dementia often need to help with various forms of bodily care, in the case of carers for trans or non-binary people with dementia, these tasks are often deeply intertwined with gender identity and the trans or non-binary person’s history of transition. This necessitates additional sensitivity, awareness, and support.

Advocating for the trans or non-binary person with dementia

As well as helping with gender-related body care and gender expression, the carers spoke about the large role they play regarding gender-related advocacy. This entails not only advocacy with various professionals, but also the day-to-day emotional labor of helping the trans or non-binary person feel safe and comfortable. For example, Lou explained that they must accompany their parent to medical appointments because if they are not present to advocate on their behalf, their parent is taken less seriously regarding their non-binary identity. Jesse also explained that David needs accompaniment to appointments, in part to help him remember details and write things down, but also to advocate on his behalf when it comes to topics such as gender-affirming surgery. Jesse stated, when referring to David’s quest to obtain approval for top surgery:

Yeah, we’re going to do everything we can. We’re already kind of thinking about the best way to advocate and approach, you know, if we have support letters from his doctor, and then his currently seeing neurology specialists and stuff.

As mentioned above, the carers’ advocacy role not only involves helping them have their voice heard and legitimized with medical professionals, but it also involves protecting their emotional well-being in relation to their transness or non-binaryness. For example, Dan expressed the following sentiment when speaking about David: “We’re not going to let other people invalidate him […]” Dan also expressed, regarding all the people for whom he provides care: “Really all I want to do is, is to help affirm and give them a safe person and a safe space to be.” Jesse echoed this sentiment:

He [David] needs somebody that he can, if he’s having a moment or he doesn’t remember something, that he can at least identify or trust, so we can help calm him down. If we’re not there, if neither of us are there and somebody walks in that he doesn’t know and he, he forgets who they are…they’re in the middle of doing some care, where he’s being touched…it’s not going to be ok […].

The emotional labor involved in advocacy is something that is often not emphasized when it comes to care. The participants’ testimonials highlight that this is possibly an important area of care for marginalized people, including the emotional labor and advocacy for medical care and social services that are respectful of trans and non-binary identities and bodies.

Decision-making and future planning

The final area of care tasks that we identified as entailing a component linked to gender identity or expression, is decision making and future planning. For example, a few years ago, Nancy and Victor made the decision to move from their countryside home to the city, where they would be closer to Victor’s medical team. This medical team includes not only the professionals related to his dementia care but also his gender-related care such as his endocrinologist. As Victor required an increasing amount of care and intervention to be supported, the decision about where to live became central. More recently, after moving Victor to a long-term care facility, after a few months Nancy had to make the decision to move him back home due to the cisgenderism he was experiencing. She has since decided that Victor will remain at home for the foreseeable future. Lou, Dan, and Jesse have also expressed that they don’t ever envision turning toward long-term care facilities, primarily due to the cisgenderist discrimination they fear would occur in these institutions. As a result, they are planning for a future in which the person with dementia will be living at home indefinitely and will require increasing care. Whereas carers for cisgender people with dementia still face enormous challenges when making decisions about long-term care, for many carers of trans or non-binary people with dementia, long-term care is simply not an option.

In addition to organizing living and care arrangements, some carers expressed being concerned about future planning regarding gender identity and expression. This is in keeping with some community organizations serving the trans and non-binary communities that have encouraged trans and non-binary people to write out their advance gender directives, such as what pronouns they wish to use and how they wish to be remembered, should they die or be declared legally incapacitated (Baril et al., 2020). Jesse, in referring to David’s gender-related wishes, explained that they have helped David express some of his wishes, but that there are still some areas left to discuss:

Yeah, we’ve definitely had the conversations… I mean where, we advocate so hard that, you know things like pronouns and names and stuff… for the most part, that’s all done. Long term things though, in terms of what happens after he passes, or in medical settings, when we aren’t there, you know, we really have to navigate some of those things […].

Nancy expressed that she and Victor have had many conversations about advance directives, especially pertaining to the possibility of accessing medical assisting in dying, but not directly in relation to his gender identity. Given that they have no social or familial support network, they rely only on Nancy to advocate for Victor’s gender needs and wishes. This relative isolation creates anxiety in the couple when they think about the possibility of something happening to Nancy, leaving Victor with no gender advocate. Nancy expressed that this scenario would be “catastrophic” and that she was therefore considering the possibility of writing advance directives related to gender identity and expression.

The myriad of gender-related care tasks for trans and non-binary people with dementia carried out by the participants illustrate aspects of the caring role that are often overlooked in care scholarship. Understanding the centrality of gender-related care tasks for the carers of trans and non-binary people with dementia adds a new dimension to how we can envision caregiving roles. In particular, the participants’ stories provide excellent examples of the ways in which care tasks can be linked to oppression. For example, advocating on behalf of the trans or non-binary person with dementia is necessary due to the discrimination and oppression the person is facing and will continue to face in the future. Similarly, helping the trans or non-binary person maintain a consistent gendered appearance (if that is what they wish) also protects them against further stigma, since trans and non-binary older adults who have an inconsistent gender expression are often perceived as “confused”, and even more so when they have dementia due to forms of cogniticism and ageism (Baril & Silverman, 2019; Silverman & Baril, 2021). In sum, it is not only the fact of having a non-binary or trans (or trans-affirmative) carer that helps mitigate current and future oppression for the trans or non-binary person with dementia, but also many of the tasks those carers perform, regardless of their gender identity, that serve to reinforce this goal.

Confronting discrimination

As much as the carers are trying to protect the people for whom they are caring from further oppression, the reality is that both the trans and non-binary people with dementia, and their carers, face multiple forms of discrimination as well as anxiety about future discrimination. These multiple forms of discrimination are not only traumatic, but they also act as barriers to accessing a variety of care options.

Discrimination directed toward the trans or non-binary person with dementia

Participants expressed multiple accounts of cisgenderist violence, such as misgendering, experienced by the trans or non-binary person for whom they are caring. In a combination of ageist, cisgenderist, and cogniticist discrimination, many carers also recounted that the trans or non-binary person for whom they were caring was often not taken seriously by professionals or subjected to excessive forms of gatekeeping. For example, Nancy recounted that her husband, Victor, tried multiple times to have another gender-affirming surgery (since the first attempt in the 1970s failed); yet he was denied on the pretense of potential complications due to age and other medical issues related to physical and cognitive health. Similarly, Jesse described that, for many years, David’s desire to have gender-affirming surgery was denied by medical professionals who considered him to be confused, or did not take his gender identity seriously due to cogniticist presumptions related to his dementia:

[I]n terms of surgical stuff… the navigating that, definitely, well… ‘Are we sure that you are really trans? Are we sure that this is really something you wanted? Are you able to provide informed consent?’ There’s all of that stuff that comes up. All of it.

Jesse also articulated similar forms of cogniticist and cisgenderist discrimination faced by David:

There’s been a couple of doctors that just misgendered or deadnamed him, which is really interesting because his name has been changed for a while now, but there’s also instances of doctors not really taking him seriously. You know it’s that, well, you have memory issues, so I don’t really know if I can trust what you’re saying.

Lou also talked about their parent’s gender identity not being taken seriously. They stated, in referring to the medical professionals with whom they are in contact:

[There is a] lack of education, lack of awareness. They don’t care. They just want to talk about what the issue is. So, if it’s about like x-rays for my parent’s back, then it’s x-rays, just focus on the x-rays.

The same experience is also echoed by Dan, when talking about how medical professionals have responded to his neighbor Ben: “You know, they’re not even validating who he is. They’re going to take away his hormones because they think he’s not capable of making a decision […].” These examples demonstrate how interlocked forms of ageism, cisgenderism, and cogniticism contribute to a dehumanization of trans and non-binary older adults with dementia and a delegitimization of their agency and self-determination.

While the experiences articulated by Dan, Jesse and Lou all occurred in the context of community care, Nancy described several troubling and repetitive instances of cisgenderist violence that occurred to Victor when he was in long-term care, echoing what we know to be the higher risk for trans and non-binary people in institutions (Barrett et al., 2016; Cartwright et al., 2012; Knauer, 2016). In addition to being misgendered on multiple occasions, an excessive number of staff members would enter his room to see what a trans (naked) person looked like:

Victor often told me that a lot of people came to his room, so I have the impression that some of them were trying to find reasons to come and talk to him, to see what it was like, not out of curiosity, not unhealthy curiosity, but, not to judge, but still, that’s…it’s not comfortable […].

This experience seems to confirm what Kia (2019) describes as the paradoxical invisibility and hypervisibility experienced by LGBTQ + older adults in chronic care settings. On the one hand their identity is often dismissed and rendered invisible, and on the other hand they may, like Victor, experience “othering” that renders them hypervisible. In addition to being an object of curiosity for the staff, Nancy explained that Victor was also deeply uncomfortable and triggered when receiving bodily care at the long-term care facility:

[…] It’s really the trauma of not having been able to complete the surgery, probably because in those days, they were not sophisticated enough, which is understandable, because it’s not easy to build a penis. The trauma of that… if someone doesn’t talk about that, he doesn’t think about it…. There [in the long-term care facility], he had to think about it because he didn’t like it when they bathed him. I realised that and I did it for him.

As we can see in this quote, Nancy, due to forms of discrimination and differential treatment of trans and non-binary people, had to take on more tasks, such as bathing Victor herself, even while he was in a long-term care facility, in order to protect him from the traumatic experience of having his bath given by others. In sum, what all these experiences illustrate is that for carers of trans and non-binary people with dementia, their roles are mediated and transformed by the direct and indirect cisgenderist violence experienced by the person they care for, and that ageist and cogniticist forms of violence are deeply intertwined with cisgenderist violence.

Discrimination directed toward the carer

In addition to witnessing and managing the discrimination directed at the trans or non-binary person with dementia, the carers themselves also expressed facing various forms of direct discrimination. Like the carers in Brotman et al.’s study (2007) who expressed facing discrimination by association, the same was true for the carers in current study. For example, Nancy, who identifies as heterosexual, explained that she occasionally receives heterosexist (or homophobic) comments from people who assume, based on cisnormative assumptions denying Victor’s masculine identity, that she’s a lesbian because she is Victor’s partner. This only comes from people who know that Victor is trans. As Nancy stated: “[…] when they know that I live with Victor, they say ah, so you’re a lesbian. I said, well, no, not necessarily.”

Further to facing discrimination by association, as mentioned previously, three of the four carers in the study identify as trans or non-binary, and some came to their caring role in part due to their own trans or non-binary identity. This means that they also face their own share of discrimination in various spheres of their lives. Their caregiving role thus becomes one more area in which they must confront cisgenderist discrimination. For example, Lou discussed how medical professionals systematically misgender both them and their parent: “[…] they miss pronouns, both myself and my parent, yeah, it’s terrible.” Some participants also mentioned that their own traumas can be triggered by witnessing the cisgenderist discrimination faced by the person for whom they are caring. Dan, for example, explained that he has been giving thought to his own advance directives related to gender, after witnessing what the people he’s caring for are going through: “[…] I know that’s something that, I’ve personally been thinking about and, and other folks I know, because we’re seeing what’s happening…we don’t want to follow that path.” Dan also reflected on how he might feel in the eventuality that David or Ben would misgender him as a result of memory loss: “I don’t think it would affect my ability to be kind or offer care, but I do wonder if it will be triggering or bring up trauma […]” We might imagine that both witnessing discrimination directed at the trans or non-binary person with dementia, as well as experiencing discrimination directly, could be a greater challenge for trans or non-binary carers as opposed to cisgender carers, as there is the very real possibility of being retraumatized.

The stories of Nancy, Lou, Jesse, and Dan bring the topic of discrimination to the forefront of discussions about care provision for trans and non-binary older adults with dementia. While we know that carers for LGBQ + people more broadly face discrimination and challenges in their caregiving role, such as not being given legal rights as chosen family (Fredriksen-Goldsen, 2012; Hash & Mankowski, 2017; Shiu et al., 2016; Stinchcombe et al., 2017), the narratives of the participants in the current study raise new considerations when thinking about care in the context of the trans and non-binary community. In particular, the interlocking oppressions of cisgenderism, cogniticism, and ageism lead to multiple forms of violence, such as excessive gatekeeping for surgeries (something that is already a problem for trans or non-binary people without dementia [MacKinnon et al., 2020]), disrespect of pronouns, assumptions that gender identity is a symptom of dementia confusion, and being mistreated in both community and long-term care settings. In addition to the emotional burden, this leads to a concrete lack of care options, placing more responsibility on the shoulders of carers who are also facing their own share of discrimination, either through their association with a trans or non-binary person with dementia, or directly since many of those carers themselves are trans or non-binary.

Discrimination limiting care options

These concrete experiences of cisgenderist, ableist and ableist/cogniticist violence and discrimination unfortunately confirm many trans and non-binary people’s worst fears when it comes to being dependent on others for care, especially intimate care, and possibly needing a long-term care facility (Auldridge et al., 2012; Bishop & Westwood, 2019; Boyd, 2019; Steadman, 2019; Witten, 2017). As a result of this very real violence, and the fear of facing more discrimination in new and unknown environments, trans and non-binary people’s options for care are seen as more limited, as well as carers’ options for seeking help and support. If long-term care is not an option for many, home care services are also met with weariness. For example, Nancy explained that one of the workers who came to the home to provide some services to Victor had misgendered him. Carers in this situation may be fearful of denouncing this violence, on account of how difficult it is to find workers and how desperately they need the help. The lack of care options due to discrimination is compounded by the fact that many trans and non-binary people have fewer networks resulting from relational ruptures due to cisgenderism, and cannot pay to hire help, as many have spent their lives living below the poverty line (Adams & Vincent, 2019; Grant et al., 2011; Irving et al., 2017; James et al., 2016; Trans Pulse Canada Team, 2020). In the following two passages, Jesse explains the reasons why they are not able to consider an institutional setting for David, as well as the difficulty of finding people to help at home:

As far as we know, there is nowhere specifically that offers support for queers and trans folks, so it’s not even, it’s something that we’ve talked about, but it’s not something that we really considered highly, because of those reasons. You know we want to do as much as we can ourselves, because… we trust us and we know that we can give him the care that he needs […].

If somebody comes in, especially to the home, where there’s multiple vulnerable people, there’s not just him that’s trans in that household… and somebody doesn’t, really, um, have the compassion or doesn’t have the knowledge… that’s going to impact more than just him… and he’s also really vulnerable about his body, so he doesn’t necessarily want people he doesn’t know touching him, especially if he’s not going to remember who somebody is.

Dan expressed similar concerns regarding the possibility of Ben going to a long-term care facility:

They have said, he would probably do best in a long-term facility, but they [Ben and his partner] don’t want to do that because the doctors here… there’s no way that he would be respected as a trans person… in that kind of facility.

If long-term care is not seen as a viable option for most trans and non-binary people due to discrimination, and if it’s also difficult to find trustworthy people to assist at home, this leads to a heavy responsibility on the shoulders of a few select carers, many of whom are doing the task alone. For example, even though Nancy has a few hours of help per week, she is providing the great majority of care herself and has no one to rely on for support because her and Victor are quite socially isolated. Trying to diminish the significance of this isolation, she stated: “So… it doesn’t matter, you know what I mean, it’s just the two of us, it doesn’t matter.” The most important thing for Nancy is to avoid sending Victor back to a long-term care facility: “But it’s clear that, as we speak, I’m going to do everything I can to avoid having to put him back. If I have to re-place him, well, it will be because I really have no choice.” Nancy is doing almost everything herself, despite her own fatigue and the potential repercussions to her own well-being.

Recommendations and conclusion

In addition to sharing their stories, at our request, participants also shared their recommendations regarding what can be done to offer better care to trans and non-binary people with dementia and their carers. The carers’ answers can be summarized into the following points:

• Increased training and education regarding trans and non-binary realities for professionals in all spheres, beyond just the health and social service system;

• Increased emphasis on intersectional approaches and people’s multiple identity categories;

• More value and respect placed on trans and non-binary people’s and carers’ first-hand accounts and experiences;

• More resources provided for trans and non-binary dementia care and carer support;

• More resources provided to rural communities

These recommendations echo some of the messages that have already been articulated regarding the need for education, sensitization, resources, and adapted practices for trans and non-binary older adults with dementia (Harper, 2019; Hunter et al., 2016; Latham & Barrett, 2015). Yet what the participants in our study have made clear is that the messages are not being heard in the health and social service system and that trans and non-binary people with dementia and their carers need radically more help and support as they fight myriad forms of discrimination on multiple fronts. It is also clear from our recruitment experiences that practitioners in organizations offering dementia supports and/or carer services need significantly more training and sensitization in order to even begin to recognize that they have trans and non-binary people among their service users.

In sum, the participants’ narratives contribute to existing knowledge of carers’ realities by offering a complex portrait of the lived experience of caring for a trans or non-binary person with dementia. The unique aspects of their realities challenge many normative notions of informal care, such as the pathways into care, the nature of caring dyads and/or networks, and the type of tasks that carers perform. Most importantly and most urgently, these findings offer a compelling argument for placing the interlocking oppressions of cisgenderism, cogniticism, and ageism at the center of future research on informal caregiving, dementia care, and trans and non-binary aging. The lived experiences of the carers in this study reveal that oppression is omnipresent in their caregiving role, as they fight against their own oppression and that faced by the person for whom they are caring. It is important to keep in mind that many trans and non-binary people, especially older adults, experience social and relational isolation (Adan et al., 2020; James et al., 2016; Trans Pulse Canada Team, 2020) and therefore may not have a trusted carer on whom they can rely. Many trans and non-binary people do not have someone, like the carers in this study, who can help them to advocate for themselves, or advocate on their behalf, to help mitigate the effects of discrimination. For example, one of the trans participants we interviewed (whose story will be detailed in our next article) did not have anyone on whom she could rely for support and care, and therefore could easily find herself at the mercy of cisgenderist, cogniticist and ageist forms of violence. This is all the more reason to listen to the voices of trans and non-binary people with dementia and their carers, and to start bringing their realities into conversations about care.

Acknowledgements

We thank the participants of this research project who generously gave of their time and shared their stories. We are extremely grateful to Tommly Planchat and Elgin Pecjak for their dedicated work doing the cross-Canada recruitment for this project. We also extend thanks to Maude Lévesque and Marie-Claire Gauthier, who contributed as research assistants to multiple aspects of this project, as well as Ré Poulin Ladouceur for excellent transcription.

Additional information

Funding

This work was supported by the Social Sciences and Humanities Research Council of Canada under Insight Grant 435-2019-0011.

Notes

1 All names and identifying details have been changed to protect participants’ privacy and confidentiality. This project was conducted with both English-speaking and French-speaking participants. To further protect participants’ identities, the original language of the interviews is not disclosed. In this article, any quotes that were originally in French have been translated into English. We recognize that language can be an important barrier to obtaining services and hence it can be an important axis of analysis (Baril, 2016, 2017). We have chosen not to highlight language inequality in this article in order to prioritize the protection of participants in this small sample.

2 We define the notion of “transition” in a broad manner, encompassing hormonal, surgical, legal, social, or linguistic transition. Therefore, a person who transitions could realize their transition at all those levels, some of those levels or only one of those levels, such as changing their linguistic habits and interactions through the adoption of new pronouns (such as ‘they’) instead of those assigned at birth.

3 We are currently working on another article that will focus on the experiences of trans and non-binary older people with dementia.

4 A cisgender person is someone who self-identifies with the sex and gender they were assigned at birth. In other words, a cisgender (or cis) person is not a trans or non-binary person.

5 The notion of cisgenderism, often considered a synonym of transphobia, was briefly used by Serano (2007) in her classic book Whipping Girl. However, it was first theorized and defined extensively by Ansara (2015). Ansara (2015, p. 15) writes: “Unlike ‘transphobia’, which emphasizes individual hostility and negative attitudes, the cisgenderism framework incorporates both unintentional and well-intentioned practices. Cisgenderism often functions at systemic and structural levels: even when individuals might reject some aspects of cisgenderist ideology, they may live and work within broader structural contexts that perpetuate and manufacture cisgenderism.” In other words, cisgenderism is the system of oppression against trans and non-binary people.

6 Cisnormativity, as Alexandre Baril established in his earlier work on this notion in the late 2000s, represents the normative component of cisgenderism (on the history of the notion of cisnormativity, see Silverman & Baril, 2021). Cisnormativity places cisgender people and identities as the norm and marginalizes trans and non-binary identities whose sex/gender identities and expression transgress the ones they were assigned at birth.

7 Inspired by King (2016) who coined the term cognonormativity, we coined the term “cogniticism” to refer to a specific form of ableism and represents “an oppressive system that discriminates against people with cognitive/mental disabilities … at multiple levels, including political, social, medical, legal, economic, and normative levels” (Baril & Silverman, 2019, p. 12).

8 For more details regarding the theoretical underpinnings of our work, please see our previous articles on the topic of trans older adults with dementia (Baril et al., 2020; Baril & Silverman, 2019; Silverman & Baril, 2021).

9 The terms used in the table reflect the participants’ choices of words to describe the way they self-identify.

10 Although David is not an older adult, we accepted Jesse (David’s carer) into the study because, despite his age, David has a diagnosis of dementia. Many of the realities that Jesse and David are facing are similar to those faced by trans older adults with dementia and their carers.

11 For ease of reading, we have removed some small language ‘ticks’ in participants’ quotes, such as multiple “um”, etc.

12 David and Jesse’s partner are chosen family siblings. Jesse also considers David to be chosen family.

13 We thank the anonymous first reviewer of this article for pointing out this important argument.