Gay Men as Caregivers for Spouses with Dementia: Intersections of Gender and Sexual Orientation

Abstract

Objectives

Despite the importance of spousal caregiving, and the increase in same-sex marriages concomitant to its legalization in 2015, few studies have examined the experiences of same-sex spousal caregivers. We use an intersectional approach to explore how gender and sexual orientation shape gay men’s particular caregiving approaches for their spouses living with dementia.

Methods

We focused on a subsample of gay (N = 13) contrasted with straight husbands (N = 15) from a national study of spousal dementia caregivers. Data were obtained through in-depth interviews and analyzed thematically by a team.

Results

We find that sexual minority status and gender interact to shape gay men’s caregiving approaches. Gay men’s broader division of labor in households combines with experiences of discrimination based on sexuality and HIV/AIDS, as well as being a part of a same-sex couple to influence their caregiving approaches in unique ways. Specifically, they combine a task-oriented approach with concern for the personhood of the care receiver; bring strength and empathy borne of struggle; and what they feel is a deeper understanding of the care receiver given their shared status as gay men.

Discussion

Our findings indicate that gay men’s flexibility in divisions of labor results in variable sets of skills, resources, and identities they bring to and approach their caregiving. In addition, some of the many negative experiences borne of HIV/AIDS and discrimination are reframed as sources of strength and guide caregiving efforts. Together, these findings highlight the intersecting effects of gender and sexual orientation on spousal caregiving.

When the need for help with activities of daily living (ADLs), such as eating, or instrumental ADLs, such as cooking, arises in later life, spouses are the preferred caregivers, if available (Roberto & Blieszner, 2015). However, such social trends as serial marriages, cohabitation, and same-sex marriages signal the need to explore diverse forms of “spousal care.” To date, research on spousal caregiving has focused on the similar and different experiences of straight husbands and wives, finding that wives take a more holistic, relational approach to caregiving, and husbands adopt a task-oriented, managerial approach (Calasanti, 2010, 2006; Hong & Coogle, 2016; Swinkels et al., 2019). The extent to which these findings relate to the experiences of same-sex partners is unclear (Roberto & Blieszner, 2015). We seek to address the ways that gay men, in particular, experience caregiving for a spouse living with dementia, and through a comparison with straight men, we point to the ways that this is shaped by the intersections of gender and sexual inequalities.

Experiences of (Older) Gay Men

Gay men, as caregivers, were the focus of substantial research in the 1990s and early 2000s, largely through their provision of care to persons living with HIV/AIDS. Studies documented the stressors of such caregiving (e.g., Pearlin et al., 1994), sometimes with both the caregiver and care receiver infected with HIV (Land & Levine, 2016), and frequently in the absence of support of (or outright hostility by) biological families, institutions (e.g., employers), and governments (de Vries et al., 2023). The advent of Highly Active Antiretroviral Treatment (HAART) dramatically increased the lifespans of those living with HIV/AIDS, and the disease was ultimately seen as chronic with fewer caregiving demands (Lloyd-Smith et al., 2006). Still, the long shadows of HIV/AIDS continue to be influential: “nearly all older gay men alive today, regardless of their HIV status or when they came out, have been impacted in some way by the disease” (Tester, 2018, p. 35); stigma, discrimination, and its effects remain central to research into the experiences of gay men (de Vries, 2015).

More current research explores the wholeness of lives among older gay (and LBTQ) persons, adding to the constricting and limiting experiences of stigma and marginalization, the possibility of constructive and generative actions: This is referred to as positive marginality (Unger, 2000). The diversity of relationships and the nature of support are also foci of research; the U.S. Supreme Court ruling guaranteeing same-sex couples the right to marry among other social changes has encouraged research on diverse spousal/partner relationships in later life (Frost et al., 2017). This includes first forays into research on sexual and gender minorities who perform caregiving for those living with dementia (e.g., Anderson et al., 2021). However, the literature remains relatively sparse on the caregiving status and experiences of gay men and lesbians (Zhang et al., 2024), and lacks an explicit focus on gay men who care for spouses/partners living with dementia. Finally, although the intersections of gender and sexual orientation have been recently examined in relation to who becomes a caregiver (Zhang et al., 2024), these intersections have not been explored in relation to their experiences.

Given this dearth of research on gay men who care for their spouses/partners living with dementia, below we focus on the literature in relation to gender alone. We briefly discuss how a gender relations approach would explain previous findings, and draw on this to think about gender intersecting with sexual orientation.

Spousal Caregiving

Straight spouses provide more support and hours of care than do other family and friend caregivers (Noël-Miller, 2011; Pinquart & Sörensen, 2011), though the experience, appraisals, and approaches to care differ by gender. Research has pointed to the ways that gender relations shape approaches to spousal care and possible sources of stress (Calasanti, 2010; Robinson et al., 2014). A gender relations framework posits that people’s behaviors reflect their ideas of what comprises manhood and womanhood (Glenn, 1999); such notions emerge, in part, through the typical gender division of labor, in terms of both the assignment of who will engage in paid and unpaid labor as well as designations within domestic labor. This gender division of labor over the life course contributes to the creation of a gender repertoire of skills, resources, and identities. People bring these gender repertoires into their caregiving in later life (Calasanti, 2010), and examining these can help us to understand the gender differences therein.

For instance, husbands who care for wives living with dementia report less stress than their female counterparts (Hong & Coogle, 2016; Robinson et al., 2014; Swinkels et al., 2019). Although this might be an artifact of husbands being less likely to report negative emotions and burdens (Lopez-Anuarbe & Kohli, 2019), it is often attributed to their task-oriented, problem-solving approaches to care. Scholars tie this approach to previous occupational status and skills developed therein (Robinson et al., 2014). Although the focus has been on this paid realm, the larger division of labor influences both the amount of time devoted to paid and unpaid work, and the kinds of work that men and women undertake. Because of their domestic labor experiences, women typically seek to provide personal care and also provide emotional support, which can heighten stress. Men tend to prioritize the tasks that they need to accomplish over managing their wives’ feelings, and this may buffer them from stress (Calasanti & King, 2007; Swinkels et al., 2019; Thomeer et al., 2015; Umberson et al., 2020).

However, much of what has been shown about gender and caregiving approaches in later life has emerged from research on straight men and women. In terms of structures of inequality, scholars have argued that gender relations, and the division of labor that benefits men, rests on, first, compulsory heterosexuality (Rich, 1986)—a set of institutionalized pressures upon women to form sexual relations with men. But it is also based on heteronormativity (heterosexuality as the preferred sexual orientation) that both dictates the gender division of labor (Acker, 2008) and forbids same-sex relations; as such, straight men benefit more. Thus, even though these systems of inequality—gender relations and sexual orientation—are analytically distinct, they are deeply intertwined.

Acknowledging the intersection of gender with relations of sexuality challenges the associations of husbands and “natural” masculine approaches to care work. Gendering processes can impact gay men’s lives (Heaphy, 2007), but how might this intersect with sexual orientation? Within straight couples, men’s dominance and the delegation of a range of unpaid labor and domestic tasks are typical, including assigning cognitive labor and emotional work to women (Daminger, 2019; Thomeer et al., 2015). However, same-sex couples cannot simply adopt traditional gendered norms or fall back upon gender inequalities within their relationship as they divide such work, and research finds that the division of household labor among same-sex couples is more egalitarian (Shechory & Ziv, 2007).

We cannot assume that all same-sex couples are egalitarian, but we can expect that they will have to negotiate divisions of unpaid and domestic labor more than straight couples do. Their assignments of such tasks can be variable and wide ranging. How this sexuality-specific negotiation might influence gender repertoires and approaches to care is unclear. In addition, the discrimination and marginalization that same-sex caregivers have experienced over the life course can influence the resources, skill, and identities that they draw upon in caregiving in later life.

Our Study

The present paper draws on data gathered from in-depth interviews conducted among 13 gay men and 15 straight men who care for their spouses/partners living with dementia. We ask, how do gay men approach caregiving for their spouses/partners living with dementia? To what extent are these approaches shaped by the intersections of gender and sexual minority status? We find that sexual minority status and gender interact to shape gay men’s caregiving approaches in at least three ways: First, through their more flexible division of household labor; second, through their experiences of discrimination; and third, through being a part of a same-sex couple. Taken together, we find gay men have particular experiences as spousal caregivers.

Method

This IRB-approved, qualitative study draws upon data gathered from 69 in-depth, semistructured interviews conducted nationally among older, straight men and women, gay men, and lesbians, who care for their spouses living with dementia. Our analysis here is based on the gay and straight and husbands and partners only (N = 28). A wide range of recruitment techniques were employed, from contacting agencies related to dementia, support groups, adult day care centers, memory care centers, electronic flyers, and personal contacts. Caregivers self-identified.

In addition to collecting demographic and background data, the wide-ranging interviews covered everything from the diagnostic process; changes caregivers saw over time; lists of challenges and how they dealt with these; and available resources, including formal and informal supports and basic economic information. Respondents also detailed their paid work histories and their division of household tasks prior to their spouse’s dementia diagnosis. Additional data concerning caregiving approaches were gleaned from responses to questions concerning expectations of themselves as caregivers; aspects they found most difficult; and advantages and disadvantages they thought that being a straight or a gay man had on performing care work (see Supplementary Material). All but two interviews were conducted by the first author from late July 2019 to March 2023, and lasted from 1.5 to 3 hr. Prior to the pandemic, all but one interview was conducted in person; after March 2020, they were typically conducted by Zoom until April 2022, after which they were either in person or by Zoom. Although the interviewer did not find that interview quality changed, different interview modes might have influenced responses and represented a study limitation. Interviews were professionally transcribed and entered into NVivo 12.

Analytic Strategy

We engaged in a team-based, thematic analysis of the transcripts. Biweekly meetings produced a codebook based on consensus across members of the research team (two professors and two doctoral-level graduate students) and contained first-level categories. Reliability was ensured, first, through the use of reflective memos written after each interview, and shared understanding of these and the overall interview in team meetings and discussions. Second, team members coded the same transcripts until there was agreement; any issues were discussed at team meetings. We then examined the first-level categories for additional themes as well as compared themes between straight and gay men. Pseudonyms are used throughout.

We examined the intersection of gender and sexual orientation in gay men’s caregiving both in terms of differences in reported behavior and in terms of self-reported ideals of being a gay man. That is, we looked for patterns in the descriptions of their experiences that straight men and gay men provided, to see what caregiving approaches distinguished the gay men. In this regard, we use two criteria to claim that our findings signify something about them as gay men. First, when gay men reported experiences that straight men rarely or never mentioned, we took this as at least prima facie evidence that the gay men were behaving in ways that seemed appropriate to them as gay men. Second, we also noted instances when gay men referred to their experiences as reflecting their identities as gay men as they were often aware of the links between their gender and sexual orientation in this regard.

Results

Sample

As described in Table 1, our sample was comprised of 13 gay men, who ranged in age from 59 to 84 (mean = 68), and 15 straight men, aged 62–87 (mean = 75). Interviewees were predominantly White, non-Hispanic (N = 26), with the exception of two straight men. In addition, most were well-educated and middle income or better.

Table 1.

Sample Characteristics

Pseudonym	Age	Racea	Education	Annual incomeb	Date of interview	Interview mode
Straight men
Clarence	87	W	Post-College	Very High	08/19	In-person
Jim	62	W	Post-College	Very High	08/19	In-person
Lionel	74	W	Post-College	Very High	10/19	In-person
Jeremy	71	W	Post-College	Very High	11/19	Phone
Steve	76	A	Post-College	Very High	11/19	In-person
Greg	83	W	College	Very High	11/19	In-person
Fred	80	W	College	Medium	12/19	In-person
Larry	70	W	High School	Medium Low	12/19	In-person
Edward	74	W	Post-College	Very High	12/19	In-person
Hank	82	W	Post-College	Very High	3/20	In-person
Robert	75	W	Post-College	Medium Low	3/20	In-person
Neal	76	W	Post-College	Medium	3/20	In-person
Raymond	71	W	Post-College	Very High	9/20	Phone
Frances	70	H	College	High	1/21	Zoom
James	78	W	College	Medium Low	8/21	Zoom
Gay Men
David	71	W	Post-College	Very High	10/20	Zoom
Michael	63	W	Post-College	High	10/20	Zoom
Marvin	84	W	Post-College	High	10/20	Zoom
Henry	66	W	Post-College	High	10/20	Zoom
Graham	59	W	Post-College	Very High	10/20	Zoom
Billy	70	W	College	High	11/20	Zoom
Don	72	W	Post-College	Very High	4/22	In-person
Paul	68	W	College	High	4/22	In-person
Jake	65	W	Post-College	Very High	6/22	In-person
Leonard	67	W	Post-College	Very High	9/22	Zoom
Ron	63	W	Post-College	Very High	10/22	In-person
Alan	66	W	College	Medium Low	3/23	In-person
Keith	70	W	Post-College	Very High	3/23	In-person

Notes: ^a Race: W = White; A = Asian; H = Hispanic.

^bIncome key: Very High ≥$100,000; High = $80–99,999; Medium = $60–79,999; Medium Low = $40–59,999; Low = <$39,999.

Our discussion of findings begins with an overview of differences in divisions of labor as we expected that this might influence caregiving approaches. We next examine the caregiving approaches more closely, focusing on the ways that gender and sexual orientation intersect to shape gay men’s experiences in ways that differ from straight men, which we present first as a point of contrast.

Divisions of Labor: Negotiated Versus Gender-Determined

Deciding who does what in the household differed between gay and straight men. Gay men reported allocating household labor in wide-ranging, flexible, and often egalitarian ways, whereas straight men reported more traditional, gender-determined approaches. That is, given that gay men could not rely upon gender to delegate household tasks, these could be shared, split based on preferences or hired out. This translates into the possibility of a wider range of domestic arrangements and skills than straight men have. Indeed, some, such as Alan, took primary responsibility for most household tasks and he felt that this prepared him to be a caregiver.

Straight men explained their household divisions of labor in relation to paid work (e.g., “I worked more, so she took care of the house”) or because their spouses “enjoyed” things more or were “better” at it. Some identified their divisions of labor with an understanding of gender norms quite explicitly; for instance, Jeremy referred to himself as “a typical guy that is not as good with the social stuff as women are.” And Steve noted that his wife did all the shopping and cooking: “Of course, she’s female and well she grew up that way.” These husbands tended to take responsibility for outside labor, and home or car maintenance, noting that they did so because they had the necessary knowledge or skills. Only Edward described a situation that was more shared; prior to his wife’s illness, he had done most of the housework.

Among gay men, task delegation was often based on preferences; and sometimes such notions as breadwinning were brought to bear. For example, Henry did much of the outdoor gardening, while his husband, who worked in the health and well-being field, did the cooking. This was based on preferences: Henry loved to garden, and his husband liked to cook and was picky about what he ate. But Henry also took care of making sure that household repairs were completed because “I was the breadwinner … I absorbed the bulk of that expense.” So in those areas where personal preferences did not dictate divisions, other factors, such as income, intervened.

The differences between how gay and straight men divided domestic labor were illustrated by Michael’s discussion. Michael had been in a straight marriage for 23 years, and this influenced the way that he and his husband divided their tasks. He began by saying that his husband did the cooking because “he liked it” and he “was better at it.” He acknowledged that he could have learned to cook but did not. By contrast, he did more of the light housework, like dishes. Then Michael paused and said, “I look back on it now and it’s—I suppose it’s how I fashioned my first marriage. … In my first marriage, that was the division. And interestingly, that’s exactly how it was for my mom and dad. My mom was a schoolteacher, my dad worked—well, they both worked. … It was just how—in fact, I think [how I divided tasks with my husband] just felt comfortable.” Michael’s reflection alludes to how gender relations within straight marriages shape “choice” and what one feels comfortable with in relation to divisions of labor, as well as how this might be different in a same-sex relationship. These patterns—of a more traditional, gendered basis for divisions of labor versus one that is negotiated—were reflected in the respondents’ caregiving approaches, discussed later.

Caregiving Approaches

These two groups of men replied in some similar ways to questions about how they felt that they should be giving care, and these corresponded to the impacts that dementia has on care receivers. Both groups, for example, reported that they needed more patience; and they expressed this in relation to common behavioral problems. As well, both gay and straight caregivers saw as their goal keeping their care receivers safe, and attending to physical needs. Beyond these commonalities, however, differences in caregivers’ approaches emerged that reflected variations in the domestic divisions of labor among straight and gay households.

Straight Men’s Caregiving: Task-Oriented, Problem-Solving

Although both gay and straight men were concerned to accomplish tasks needed to meet their spouses’ needs, it was the latter for whom this was the more exclusive focus. This task and problem-solving orientation did not preclude straight men’s affection for their spouses: For some, it constituted a way of showing their love. Still, the emphasis was on the tasks at hand.

Steve exemplified this approach. He spoke at length about his concern with having to make decisions about how best to take care of his wife’s physical, social, and spiritual health, and the lack of information he felt he had to do so adequately:

I wish I had something [from] Alzheimer’s saying ‘these are the stages and this is what you do if this happens and this is when you … put somebody in a day care center. But then … if you could afford it, you could do a, b, c or d.’ … You know, and a decision tree and all that … [T]hat’s the … main challenging thing now is to—going through this myriad of decision tree and it takes so much time.

The lack of reliable information impeded his ability to problem-solve—to know what actions to take and when.

Several straight husbands spoke of the difficulties involved in performing such physical tasks as bathing, as their wives tended to resist. Their ways of dealing with such resistance were often markedly different from the gay men (discussed later). For instance, Larry complained that his wife “has a tendency… you know, they want to fight you, like [when] taking a shower.” This leads to “ill feelings,” which he says could be avoided “If you just do … what I tell you to do or ask you to do. And … eat and take a shower when I say … instead of fighting me on it.” His issue with caregiving is that his wife would “just not [let] me take care of her … It’s frustrating. … it’s hard to understand. Like I’m trying to do things for you so just let me do them.” Larry wanted to provide his wife care. But he saw it primarily as a series of tasks that involve physical needs. His concerns about her feelings and resistance revolved around the ways that these interfered with task completion. “Just let me do it.” Remarks concerning problem-solving and task performance were the most common themes in straight men’s narratives.

Gay Men’s Caregiving: Flexibility

Gay men also expressed concerns about attending to the various needs of their spouses and partners, and they focused on completing tasks. They differed, however, in that the flexibility we saw in gay men’s delegation of household tasks was similarly evident in their caregiving approaches. For instance, Paul felt that gay men are more egalitarian than straight people; and he said he never thought of himself in terms of gender roles. As a result, he felt he had more flexibility and that this helped him with caregiving. Graham also expressed the belief that “gays tend to have … more of a balance of having to do it all, play both roles” of “being outside the home taking care of all the financial” needs and “taking care of the house and family.” Likewise, Billy felt that because he is gay, “there is no blueprint” for how to do things, a reality that was both liberating and frightening:

We don’t have a blueprint as far we’re supposed to be or at least how society has thought that we were … But we make our own blueprint. We make our own way in life. We have the freedom to do that, which is wonderful, and we have the fears of doing that because we don’t have guidelines—as many guidelines as others do. … Well, I think … without having a blueprint, you have—if the gay man has an openness and a willingness to step up to provide what’s needed, they’re less encumbered … with … [t]he ‘shoulds’ and ‘oughts’ of care. … [W]hatever [husband’s] needs have been, I’ll figure out a way to meet them. And whatever they will become, I hope to continue figuring out a way to meet them. … I’ve never said, “Well, I’m not gonna do that ‘cause, you know, ‘guys don’t do that.’

Billy’s discussion indicates the particular ways that they give care as gay men. The flexibility apparent in their caregiving approaches goes beyond the typical male task orientation.

Gay Men’s Approach: Combining Task Orientation With Personhood

Many gay men added to this task orientation what we call a personhood approach: They placed the care receiver’s feelings, especially dignity, at the forefront. The extent to which they did this was variable, but they incorporated this more holistic approach into their caregiving far more than straight men did. Several spoke of trying to balance the completion of tasks with preservation of a sense of the care receivers’ autonomy. For instance, David said that his expectations for caregiving involved “making sure that he’s safe. Making sure that I don’t … take way his independence, … his ego, his own self-worth …. I want to make sure that … his own self is not undermined or taken away.” Like the straight husbands, David was concerned for his husband’s safety; but he did not want to violate his spouse’s sense of self and dignity in trying to assure this. This sense of taking the other into account was prevalent in most gay men’s interviews. As Billy put it, caregiving was “an ongoing learning process … by paying attention to what is needed. And then responding to what is needed—actually needed as opposed to what I think is needed. And that can be two different things.”

David spoke at length about his concerns to preserve his husband’s dignity and masculinity, and he constantly reflected on whether he was doing caregiving right. His husband, Will, has some processing issues and could make poor decisions. David described himself as a “helicopter” dad as a result, and he worried about “how my caregiving ends up negatively impacting [Will] and how I think it undermines his … ego or his masculinity. … [S]ometimes I feel like I’m doing that to him … I don’t like that feeling. … I feel I’m hurting his feelings all the time.” He was consistently aware of how his responses to Will’s problems might take away Will’s personhood, and he outlined various strategies he undertook to keep this from happening. David’s interview demonstrated a combined approach to caregiving: his gaze was fixed on accomplishing tasks, including ensuring that Will was safe; at the same time, he was concerned to preserve Will’s personhood.

Billy’s interview encapsulates the differences between the two groups of men. His narrative began by discussing his husband’s bladder control, and how the task at hand was to manage this while they were traveling. At the same time, he was worried about his husband’s personhood. To deal with the car travel, he told his husband that they would stop periodically, “‘whether we need to go to the bathroom or not.’” He then explained additional strategies he employed and why:

[W]hen he was in the midst of having these problems … I knew that … wearing adult diapers—Depends—would not solve his problem but it would … solve the effects of the problem … So … I got a new bed cover … that’s waterproof … And we put that on and…I went out and I bought some adult Depends—men’s Depends—and … knowing…the proud man that he is—I—without him knowing this at all—I put a pair on for the day and I told myself, ‘Okay, you’re gonna wear these all day. You are not—if you go to the bathroom, you’re gonna let it rip and you’ll just go in those pants. And then you’re gonna keep those pants on for a minimum of two hours.’ Because it’s a two-hour drive to our kid’s house. … ‘And do what you normally do. Sit down and watch TV, work in the yard, cook dinner, whatever.’ And so I did that and it was … like anybody, you know, I wet my pants and I thought, ‘Oh my gosh, I’m embarrassed all by myself.’ But I kept them on and I kept going to the bathroom … and I checked to see if I was leaking and I wasn’t. … And anyway, after about two and a half hours I said, ‘[Bob], come here.’ And I took him into the bathroom and I slowly stripped … And I’m standing there … with just these briefs on and he’s kind of like, ‘What’s going on?’ And then he—then he saw. And I said, ‘[Bob], I’ve worn these all day. … I have wet these pants and they’ve been on for over two hours.” I said, ‘Come here and feel.’ And he put his hands all around. I said, ‘Dry as bone, huh?’ ‘Yeah.’ So I said, ‘Mark my words, it’s going on record that I’m the first one in this family to have adult diapers and wear them.’ And he—you know, man of few words, but he kind of looked at me with these tender eyes and we have not had a problem since.

When asked how he arrived at this strategy, Billy said, “I think it was his dignity that came to mind. I thought, ‘How can I—how can we broach this in a dignified, respectful way but face it head on? Where his dignity is upheld in this situation that needs to be faced that’s embarrassing and humiliating?’ And I just—it just came to me.” Taken together, Billy handled issues of incontinence in a way that both dealt with it and still maintained his husband’s dignity.

Finally, in contrast to the straight men, most of the gay men in our study described themselves as nurturing or mothering. These identities were a part of how they saw themselves and were sometimes attributed to the paid and unpaid labor they had performed. Graham described gay men as in “their own class”; he felt that they had feminine traits and engaged in “mothering and taking care of the family.” Similarly, Don said that men want to “fix” things; but he thought gay men were more hybrid and incorporated feminine traits: he said he was engaged in “mothering” and he enjoyed it. He felt that “as a gay man—I don’t know that I can say this about all gay men but many—[caregiving] would be easier for me because of the hybrid quality of my sexuality to have the maternal aspect of caring come easier to me than I think a straight man would.” He is clear that he doesn’t see his husband as a child, but in referencing his husband’s dependence, he compares caregiving to a mother’s selfless love for a child. Billy talked about having developed problem-solving skills in his job but also that “As a former educator, I am a nurturer.” The specifics of his occupation and caregiving are different conceptually but they are the same: posing problems to be solved, but in a manner that preserves personal dignity.

Sexual Inequality and Discrimination

Unique among gay men were experiences of sexual minority status: stigma and discrimination that bore on their caregiving. Respondents spoke of these experiences that, while negative, often influenced their caregiving in ways that they characterized as positive. Several respondents said they had become stronger as a result of having to deal with discrimination, and that this helped them deal with dementia caregiving. Jake, noted, for example: “We’ve had a chance to see what it feels like, to be discriminated against as ‘other’, in some way. There’s a different kind of compassion present, in seeing people who are having struggles of their own, that don’t group them into a big blob ....”

Many respondents mentioned the AIDS epidemic as having influenced their caregiving, and they spoke of three ways. The most obvious one related to how it had affected them directly, as some had dealt directly with friends who had contracted AIDS. But the more common mention, such as with Keith, related to the ways that having to cope with the epidemic, in a context of marginalization, made them stronger and more self-reliant. Contrasting his experiences with straight couples, he said that:

We’ve been through a lot that I think that other-sex couples haven’t been through. They have their own … crazy things happening. … But I think it makes us maybe a little stronger if we’ve managed to get through all this. You know, because … AIDS … Especially people of our vintage have really gone through watching young people die and all kinds of relationships get strong and fall apart and family things. Because we’ve never … most of us had not had great parental relationships. … So I think that makes us more self-reliant.

Jake and Ron also felt that gay men give care in a way that reflects the range of struggles that they have been through, above and beyond AIDS, so that they have more empathy.

Finally, Graham’s situation adds another layer in referencing discrimination. His husband’s cognitive and physical decline were directly related to HIV. As he put it, “HIV got into the brain—basically ate away sections of the brain.” They had lived in an area for 30 years that was gay-friendly and yet, when his husband’s health declined, “whether they were reacting to his look and his inability or the fact that he had HIV—we had issues with dentists, we had issues with RNs, with caregivers in the hospitals.” He said that in addition to “the challenge of coping with being gay and hiding and reclusiveness” that he experienced over his life course, negotiating proper care for his husband taught him that “we’ve gotta take care of ourselves.”

Being in a Same-Sex Couple

Finally, respondents spoke of how being a gay man, part of a same-sex couple, mattered for their caregiving, and bestowed advantages upon them in comparison with their perceptions of straight men.

The first area emerged in relation to bodies. Reflecting the different approaches between straight and gay men, Larry’s frustration with showering his wife, discussed earlier, was typical of many straight men’s responses: They were concerned primarily with accomplishing the task and saw their wives’ bodies as a part of that task (as objects). The same was true of toileting. Lionel noted that, although his wife was not incontinent, “her hygiene’s not good; so I have to check after her and that kind of thing after she goes to the bathroom ….” As her dementia worsened, Lionel had to ensure that she cleaned: “She’s not real good about attending to herself afterwards … So I usually—I put on a glove and I make sure she’s cleaned up.” After the recorder was turned off, Lionel voiced his great distaste for having to clean her after bowel movements; but he did it.

Gay men did not speak of personal care in the same way. They might also see it as an unpleasant task; but, as we saw with Billy, they were more likely to view their husbands in terms of their personal dignity, as subjects. Don even spoke of dealing with his husband’s toileting needs as a form of intimacy: “[T]here is a certain intimacy about it, you know? Even the most intimate thing on the earth at some point is poop because it’s the thing we have the most vulnerability about, maybe? I mean, it’s a strange … you know, all the rest of it isn’t as intimate. You know, sex is easy. That’s identity. Poop is—yeah.”

Gay men also spoke of having the same (male) bodies as their care receivers, and they saw this as an advantage in caregiving. For instance, Jake said that “from a physical point of view, I mean, we’re way more used to taking care of people’s body parts that some people find offensive and difficult ... and that’s a big deal, in terms of feeling safe with someone who’s taking care of you, I think.” There was a belief that as men, their similar bodies mattered; Ron said, “we have, we share issues, you know? … So we understand, maybe ... because [we share] some of the same male. … physical issues.” Billy noted that as a gay man, he has the advantage of knowing how the male body works so that intimate care is easier than it would be in a different-sex relationship. Don agreed, noting that “it’s easier to take care of another man than it would be a woman. I know how his body works, I can just do all kinds of things. And so strangely, I think the intimacy is a little easier.” Henry felt that because his husband was “private” it would be easier for him to receive care from a man.

Michael provides an interesting vantage on this issue, given his lengthy straight marriage. In thinking about caring for his husband versus his ex-wife, he said that,

I try to sort of imagine what it would be like … providing, you know, all the bathroom and bathing care and all … And I could’ve done that, I think, with [my ex-wife] but … it would have been really pretty tough for me. … It would have been different. … I think it’s about the intimacy. I think it’s about gender. And—yeah, kind of how we are with our bodies.

This perceived similarity may well have given gay men a way to preserve the personhood of the care receiver that neither straight men nor women have.

Finally, some respondents felt that, as gay men, they shared similar emotions with their spouses. Michael said that being in a same-sex relationship made him more able to access feelings and develop a deep level of understanding and intimacy. He maintained that a gay man has a different comfort level with tears, and can tap into non-traditional masculinity. He was not discounting the presence of what he considered to be traditional masculinity but was instead pointing to the flexibility noted earlier. He did not believe that gay men are more gentle; he said a relationship between gay men involves two male egos and strong personalities (which, he felt, was more difficult for straight women to handle) and in fact “we all still lose it.”

Similarly, David maintained that “I know [Will] more intimately [than would a straight man with his wife]: physically, emotionally, spiritually.” He felt that gay men are more vulnerable and able to express their emotions than straight men. Overall, then, he felt that gay spouses were able to communicate better.

Discussion

Same-sex marriages and partnerships are rarely examined in the caregiving literature despite their increased prevalence. In attending to this research gap, we drew upon two literatures in our focus on the experiences of gay men who care for spouses living with dementia. The first finds that men’s and women’s approaches to spousal caregiving differ based on long-standing gender divisions of labor in a context of inequality; as a result, men take more task-oriented approaches, whereas women hold themselves accountable for the feelings of others and adopt more holistic approaches that maintain personhood. Given that these findings of gendered approaches emerge from research on straight couples alone, the second literature we drew upon points to the intersection of gender with sexual inequality wherein the strictures of compulsory heterosexuality and heteronormativity that undergird traditional gender assignments of tasks no longer hold. On that basis, we theorized that gay men’s experiences with paid and unpaid labor would lead to their acquiring somewhat different skills, resources, and identities from straight men, and that this would shape their spousal caregiving experiences. To explore this possibility, we examined data gathered from 28 in-depth interviews conducted among straight and gay men caring for their spouses living with dementia, and we asked, how do gay men approach giving care to their spouses/partners living with dementia? And, how might this be shaped by the intersection of gender and sexual orientation?

We found, first, that the gay men, who were not bound by traditional gender task assignment, had to negotiate domestic labor and they delegated tasks in a wider range of ways. The greater flexibility apparent in gay men’s adoption of unpaid labor affected the skills they developed, potentially preparing them for caregiving (for instance, their greater familiarity with household tasks could make their transition to caregiving easier) and disentangled gender norms from identities and subsequent caregiving scripts. As a result, and although they shared with straight men some expectations concerning how they should provide care, such as having more patience, overall, the gay men in our study differed in how they approached their caregiving.

Dovetailing with previous research, the straight men in this study were task-oriented problem-solvers who prioritized completing caregiving tasks (Calasanti & King, 2007; Hong & Coogle, 2016). They cared about their wives’ well-being, but they understood their “job” to involve ensuring their wives were safe and cared for; however, they defined the latter tasks. Gay men also felt they should attend to their spouses’ safety and needs, and could be quite task-oriented and problem-solving in their actions. But they combined this orientation with what Kitwood (1997) described as a personhood approach—focusing on respect, autonomy, and personalized care while keeping their loved one connected to others and a sense of place. Gay men sought to complete caregiving tasks in a manner that also considered the care receiver’s feelings and dignity, consistent with what Hennelly et al. (2021) have reported. Their accounts reflected the negotiation of and greater flexibility in household tasks and in their relationships and a movement away from gender norms rooted in inequalities.

Gay men’s accounts revealed additional ways that sexual minority status intersected with gender to influence their caregiving. They maintained that their experiences with discrimination over their life courses made them better able to cope with the challenges of dementia care. They mentioned HIV/AIDS, both in terms of having had to cope with that epidemic in a context of marginalization and also for giving them a sense of empathy that they brought to their caregiving. HIV/AIDS experiences and discrimination were related (though not overlapping) organizing constructs for many of the older gay caregivers. Comments on having “to take care of ourselves,” the greater self-reliance mentioned several times, and finding one’s own way (including the absence of a blueprint) were linked, sometimes directly, to these previous experiences among this cohort of gay men. These experiences, borne of discrimination, are similar to other reports in the literature (on noncaregiving older LGBT persons) on positive marginality: finding meaning and strength in the experiences of stigma (de Vries, 2015; Meyer, 2003; Unger, 2000).

Finally, being a member of a same-sex couple itself shaped how gay men gave care. This was apparent in both groups’ discussions of bodily tasks. Beyond gay men’s more personhood-oriented approaches, men in same-sex and different-sex couples saw the bodies of their care receivers as more like their own, or as totally disparate, respective views that further differentiated their approaches to care work.

Our study is limited in some ways. First, as a small, qualitative study, our findings are not generalizable to the larger population. As well, the respondents were a select group; for the most part, they were White, highly educated, and middle income or better. How these characteristics influenced our findings is unknown, though we could speculate that the resources of education and income have a substantial impact on the strategies they employed to deal with caregiving challenges. Finally, the emergence of the pandemic in the midst of the data collection meant that we could not conduct interviews in person, and had to resort to Zoom; we cannot be sure that this medium had no impact. At the same time, Zoom and in-person interviews are still face to face, which allows for a comparable ability to interact visually. In addition, the pandemic might have increased the challenges for those who were interviewed after it commenced. As our study explored caregiver approaches to challenges, this focus itself was not affected. However, the accumulation of challenges could have had a variable influence, and our inability to assess this is a limitation.

This study of gay men caregivers suggests that sexual orientation intersects with gender in shaping gay men’s particular caregiving experiences and approaches, and it challenges us to expand our notions of a gender repertoire, which is based on the experiences of straight men and women. Our findings also make clear the malleability of (straight) gendered approaches to care. Although it does not address caregiving approaches, Miller et al.’s (2024) recent qualitative study found that, for the straight men whose life courses have included caregiving earlier in life, caregiving for their wives living with dementia was not threatening to their masculine identities. In this regard, they still drew upon their paid work background, but the combination of paid and unpaid labor mattered. This finding combined with the present study certainly presents the possibility that straight men can employ the personhood approach to caregiving typically ascribed to women.

Our findings raise several questions for future research. Straight wives who care for their husbands living with dementia report an added stress that appears to result from their focus on personhood (Swinkels et al., 2019; Thomeer et al., 2015). Does the same result accrue to gay men? Does the combined approach that we observe in this sample of gay men serve to increase or buffer stress, or does it just point to varying sources? Research should assess how varying approaches to caregiving might lead to different sources of stress. This can help to move us away from a “one size fits all” approach to understanding and alleviating caregiver stress that might leave some groups misunderstood and underserved.

Funding

This work was supported by the National Institute on Aging (5R21AG061365-02 and 3R21AG061365-02S1).

Conflict of Interest

None.

Data Availability

Presently, the data analyzed here are not available to other researchers.