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. Author manuscript; available in PMC: 2025 Nov 21.
Published before final editing as: J Appl Gerontol. 2025 Sep 29:7334648251378797. doi: 10.1177/07334648251378797

Recruiting sexual and gender minority older adults with and without dementia in long-term care: overcoming barriers and lessons learned

Morgan M Wright 1, Tetyana P Shippee 2, Tricia Skarphol 2, Jason Flatt 3, Andrew Alberth 4, Rajean Moone 5, B R Simon Rosser 1
PMCID: PMC12633849  NIHMSID: NIHMS2108525  PMID: 41024525

Abstract

Sexual and gender minority (SGM) older adults, including those in long-term care and living with cognitive impairment, are underrepresented in research. This study explored barriers and facilitators to recruiting SGM older adults using long-term services and supports (LTSS) into research. As part of a broader project on SGM policies in LTSS, we conducted qualitative interviews with 20 assisted living and nursing home administrators identified through a related survey. Thematic analysis revealed three key themes: difficulty identifying SGM residents, the need to address discrimination by other residents, and special considerations when working with SGM residents who have Alzheimer’s disease or related dementias (AD/ADRD). These findings highlight the importance of developing strategies to identify SGM participants, mitigate discrimination, and ensure appropriate consent processes for those with cognitive impairment. The results offer guidance for researchers aiming to ethically and effectively include SGM older adults with AD/ADRD in LTSS settings.

Introduction:

Sexual and gender minority (SGM) or lesbian, gay, bisexual, transgender, queer, and additional sexual and gender diverse identity older adults have a greater need for long term care than their heterosexual and cisgender (not transgender) peers (Rosser et al., 2023). SGM refers to anyone who identifies as lesbian, gay, bisexual, transgender, and intersex, or whose identities do not align with cisgendered - where an individual’s gender reflects their sex assigned at birth - and heterosexual, or straight. LTSS includes any inpatient or residential care setting, like nursing homes (NHs) and assisted living facilities (ALFs), that provide rehabilitative and supportive care to those unable to live independently. Need for LTSS for SGM people will increase as younger cohorts with more self-identifying SGM people age (Fredriksen-Goldsen, 2016). Despite this demographic shift, research on SGM older adults in LTSS remains scarce, especially regarding the unique intersection of SGM older adults living with Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) (Buczak-Stec, 2023).

SGM older adults may require LTSS more-so than heterosexual and cisgender older adults. Although most older adults, including SGM older adults, prefer to remain in their homes and communities as they age, or age in place (Boggs et al., 2017; Wiles et al., 2011), limited financial resources, family and social support, and advancing health conditions may necessitate entering LTSS (Cabañero-Garcia et al., 2025). Lifelong experiences with discrimination underpin disparities in financial resources, family and social support, and worse health outcomes for SGM older populations (Emlet, 2016; Fredriksen-Goldsen et al., 2024). SGM older adults are less likely to be partnered, married, or have children, and they are more likely to live alone and be estranged from their family of birth (Fredriksen-Goldsen et al., 2013; Fredriksen-Goldsen et al., 2024; Kim et al., 2017). Greater risk of chronic health conditions among SGM older adults indicates LTSS may be more necessary for SGM aging populations as health conditions progress (Caceres, Streed, et al., 2020; Fredriksen-Goldsen et al., 2024; Selix et al., 2020).

Research that includes SGM people living with AD/ADRD in LTSS is especially important as they have increased risk for AD/ADRD but SGM identities are not specifically considered in most studies (Hsieh et al., 2020; Liu et al., 2020; Flatt, 2020). AD/ADRD is more prevalent among SGM people who identify as people of color, HIV-Positive, transgender, and/or male (Fredriksen-Goldsen et al., 2018; Dragon et al., 2017). Furthermore, SGM people express fears of discrimination when LTSS is needed, often delaying or refusing care or hiding their sexual and gender identity when entering a facility (Putney et al., 2018; Rosser et al., 2023). Staff report limited knowledge and awareness of SGM residents and their unique care needs (Caceres, Travers, et al., 2020; Shippee et al., 2024), suggesting SGM people lacks visibility in LTSS settings and research, posing challenges when developing research recruitment strategies for this population. A barrier to advancing research includes challenges in recruiting SGM older adults who reside in LTSS facilities. This is compounded when individuals are living with AD/ADRD. Very few studies exist that focus on SGM people in LTSS, especially those with AD/ADRD (Shippee et al., 2024). The goal of this study is to identify barriers and facilitators for recruitment of SGM older adults residing in LTSS facilities into research studies.

Methods:

Design

As part of the larger mixed methods study on SGM friendly policies in LTSS, we recruited 20 administrators of assisted living and nursing homes in Minnesota. The recruitment took place as part of a larger survey. Invitations to participate in the larger survey were sent by mail and over the phone to all licensed assisted living facilities and nursing homes in Minnesota with six or more beds. Facilities with less than six beds were excluded because of different licensing requirements (Moone et al., 2024). Facilities were identified through the Minnesota Department of Health’s “Find a Provider” search. The database lists all licensed ALF and NHS in Minnesota as well as their bed size and address. We used the Office of Management and Budget’s metro or non-metro county classification to categorize our facilities (Health Resources and Services Administration, 2018). Facilities were coded as metro or non-metro using the population of their county where counties with populations >50,000 are considered metro.

The survey included a question asking if survey respondents were willing to participate in an interview regarding recruiting SGM residents. Invitations were sent to every nursing home and assisted living facility in Minnesota with six or more beds (n= 1,514). Out of a total of 433 unique responses, 119 administrators indicated interest in participating in interviews. We used a purposeful sampling method and selected 20 participants to ensure inclusion of rural and urban facilities as well as religiously affiliated facilities. Saturation was determined by noting the point at which no new themes emerged across key subgroups (rural vs urban and religious vs non-religious facilities). To this end, saturation was assessed after each interview, with the 20th LTSS administrator interview producing no new themes within our sample.

The interview guide was developed by the author team and sought to aid in recruitment for a future Aim of the larger study. Questions were designed and revised by LTSS experts, including researchers in long-term care and current and former LTSS administrators and those who train them. The interview questions were further vetted by additional study team members with expertise in research on SGM older adults. The interview guide included probes. See interview questions in the Appendix 1.

One-on-one interviews were scheduled via zoom, occurred between August 2022 and June 2023, and compensated participants $150. No policy or operational changes occurred during the interview window to our knowledge. The interviews lasted on average 30 minutes and ranged from 16 to 52 minutes in length. The interviews were recorded in Zoom (Version: 6.5.6) and transcribed by a working group of two students and a study team member (TS) in Nvivo 12 (QSR International, 2017). To ensure fidelity, the transcription group reviewed Zoom transcripts while listening to interviews independently to correct errors before convening to produce a final high-quality transcript for subsequent analysis. Interview recordings and transcripts were stored using Box, a secure, cloud-based, commercial file storage, sharing, and collaboration service, in accordance with University of Minnesota data security best practices. The author’s home IRB approved the study.

Analysis

A partially inductive/deductive thematic analysis was conducted after initial coding occurred. Initial codes were developed based on the interview guide and study aims by the full author team (deductive). An inductive approach was used to identify additional codes that emerged from the data. The full author team contributed to the creation of the initial codebook based on interview questions that focused on barriers, facilitators, and best practices for recruiting SGM older adults in LTSS settings.

Initial coding was conducted by one team member (TS) with extensive qualitative experience, using Nvivo 12 software (QSR International, 2017). Transcripts were first coded by domain (e.g., SGM resident identification, recruitment strategies), followed by detailed line-by-line coding to capture sub-categories (Charmaz, 2014), such as distinctions between rural and urban facilities or differences based on religious affiliation. After initial coding, we engaged in axial coding to explore patterns and relationships across codes, such as how facility type shaped perceived recruitment efforts.

Emergent codes were reviewed and discussed in a series of team meetings, where inductive themes were refined through collaborative discussion. Although transcripts were not double-coded due to limited team capacity, this consensus-based approach allowed us to triangulate perspectives and increase thematic validity.

Through this process, we sought to understand how different recruitment dynamics (e.g., setting type, outreach strategy) interact and contribute to the broader pattern of recruitment of SGM older adults in LTSS.

Trustworthiness and rigor:

While no formal inter-coder reliability metrics were calculated, we followed established best practices in qualitative thematic analysis by prioritizing consistency, transparency, and reflexivity (Braun & Clarke, 2021). Data were deidentified by the primary coder (TS) and reviewed for accuracy, and all data were stored securely using the Box platform. To enhance trustworthiness, we engaged in peer debriefing and triangulation of data interpretations through interdisciplinary team discussions. The diverse disciplinary and personal backgrounds of the research team supported ongoing reflection and refinement of analytic insights.

Importantly, this study did not include interviews with residents and references to consenting residents with AD/ADRD refer to hypothetical future studies. Also, the administrators’ reflections on recruitment and consent for residents with AD/ADRD were speculative. We have added a note to the limitations section highlighting the need for further study to distinguish between administrators’ firsthand experiences and opinions or assumptions.

Reflexivity:

Our primary coder, a white, cisgender female (TS) has an extensive background in LTSS research but is not a member of the SGM community. She has conducted research in a range of LTSS settings, including nursing homes and assisted living, and brought both a systems-level understanding and some personal assumptions about potential institutional barriers to SGM inclusion. Reflexivity was managed via regular debriefing meetings with the broader research team, which included researchers with lived experience in the SGM community and LTSS. These ongoing discussions allowed us to surface assumptions and challenge the interpretations as part of a consensus-based coding process.

Results:

Participant and facility characteristics:

Of the 20 administrators interviewed, 8 (40%) worked in rural areas and 12 (60%) in urban areas. Nursing homes made up 9 of the 20 LTSS facilities in which the administrators worked, with the remainder made up of assisted living facilities. These proportions generally represent the rural/urban distribution of LTSS in MN as well as a higher proportion of assisted living vs. nursing homes. All religiously affiliated LTSS facilities were affiliated with Christian denominations. Demographic information was not collected.

Themes:

Interviews revealed several key barriers that hinder recruitment of SGM residents in LTSS facilities into formal research studies. Three overarching themes emerged from the interviews regarding recruitment of SGM residents in LTSS facilities: 1) challenges of identifying SGM residents, 2) SGM residents fear of judgment from other residents, and 3) special considerations around AD/ADRD. See Figure 1 for a list of themes and strategies to overcome identified barriers.

Figure 1.

Figure 1.

Figure 1.

Figure 1.

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Themes and strategies to address identified barriers

I: Challenges in identifying SGM residents:

Administrators highlighted the substantial difficulty in identifying SGM residents due to absence of data collection on sexual orientation and gender identity. They noted that most staff do not know if they have SGM residents. One administrator shared, “We don’t really ask about sexual health, which is a big part of your health care, so I thought that was kind of surprising” (Urban ALF Admin 4). Even when facilities might ask about one’s sexual orientation and gender identity, they lack standardized procedures to gather such information. Some facilities might ask residents upon admission, while others do not. One rural administrator noted, “I don’t think we ask anything [about sexual orientation or gender identity] on our intake questionnaire or application” (Rural NH Admin 11), and another urban administrator said, “We don’t have any sort of questions [in our admission paperwork] that would prompt that [sexual orientation and gender identity] for residents” (Urban ALF Admin 10). Taken together, SGM residents are erased by not collecting sexual orientation and gender identity (SOGI) data.

Further compounding the challenge of identifying SGM residents is the perception of there being fewer SGM residents in rural areas than urban areas. Administrators in rural areas, when asked about identifying SGM residents, remarked, “We’re a very small, rural kind of farming community. It’s still not that real progressive…” (Rural ALF Admin 14) and “We’re a bigger town now, but our residents are still far more conservative than probably the metro population” (Rural ALF Admin 19). One administrator from an urban area felt that metro residents are more diverse and such data collection would be easier, “Certainly inner city nursing homes, where I spent a little bit of time, have some transgender, some gay and lesbian [residents]” (Urban NH Admin 12). While there may be more SGM people in urban areas than rural, perceptions that there are no SGM residents cannot be substantiated without first collecting SOGI data.

II. Fear of judgment among SGM residents:

interviewees pointed to fear of mistreatment from other residents as a barrier to residents openly identifying as SGM. One administrator noted, “I think that fear with a lot of older LBGTQ residents, is the fear of other residents knowing and how they would be judged. I don’t really see that fear with them telling staff or administration or the facility or the community that they live in, it’s mainly their peers. I think that they’re most concerned about that” (Rural ALF Admin 2). Responding to a probing question about whether staff or residents posed a larger barrier to coming out, another administrator echoed, “ I think it would be more their peers versus the staff because we have several staff members that are lesbian and the residents don’t know, but the other staff know and they’re just fine with it” (Rural ALF Admin 5). Some administrators also felt that older residents might be less comfortable with supporting out SGM residents with some indications that younger residents might be more open about their SGM identity. An administrator at two urban facilities reported, “A younger senior, maybe they’d be more likely to talk about [their sexual orientation]” (Urban NH Admin 8), and another administrator added, “I think generationally right now, I don’t know what generation we’d be in the 75–95 range, are a little more private about their feelings…but the Baby Boomer generation is a little more open” (Urban NH Admin 13). Additionally, some residents were selective about disclosing their identity, challenging the assumption that outness is a binary distinction. An administrator noted this and said they had “two residents who were open about their sexuality and … one that [the administrator] thought wouldn’t want their sexuality shared with but did share [their sexuality] with staff” (Rural ALF Admin 2). In summary, many administrators felt that most discrimination would occur among residents rather than from the facility staff.

III. Intersection of SGM identity and AD/ADRD:

another persistent theme involved the challenges of obtaining informed consent from SGM residents living with AD/ADRD. Administrators emphasized the necessity of involving personal representatives or caregivers when AD/ADRD was more severe. One administrator said, “We always want to run everything through [the personal representative of the resident] so that there’s no confusion” (Urban ALF Admin 1). Another administrator added, “we would probably want to go through the power of attorney” (Urban ALF Admin 4). However, a separate administrator emphasized it was important not to assume that residents with AD/ADRD can’t speak for themselves and said, “the biggest issue that we run across in [consent and interviewing residents] is always people assume they have to talk to caregivers. And unless that person is incapacitated and has activated power of attorney, you can absolutely talk to the relevant resident and they’re still able to consent to that, even though they have a cognitive impairment” (Urban ALF Admin 10). Administrators also discussed the need to be mindful of logistical challenges, such as the need for repeated engagement. As one administrator said, “[those with dementia] consent might really depend on how their day is going. You catch somebody on a good day that you’re probably more likely, and if they’re having a tough day, you’re more likely to get a no. You just in general with, with dementia at any stages there’s just a lot of reapproaching” (Rural ALF Admin 14). Administrators recommended tailored approaches for interviewing older SGM residents with AD/ADRD, with one suggesting “shorter-length, focused conversations, and face-to-face” approaches with “the less stimuli, the better” to ensure effective communication and rapport building (Urban ALF Admin 12).

Discussion:

This study identified barriers and preliminary insights for recruitment of SGM older adults using LTSS, especially those living with AD/ADRD. We identified three themes from our interviews with LTSS administrators: challenges in identifying SGM residents, concerns about discrimination against SGM residents by peers, and considerations for recruiting SGM residents with AD/ADRD. These themes highlight the complexities and challenges in recruitment and identification of SGM residents within LTSS facilities, emphasizing the need for standardized data collection practices, addressing fear of discrimination, and navigating the nuances of obtaining informed consent in the context of AD/ADRD diagnoses.

The first theme, challenges of identifying SGM residents, reflects the lack of a standardized, wide-spread collection of sexual orientation and gender identity (SOGI) information. Multiple organizations have recognized the importance of SOGI data and called for its collection including the National Academy of Medicine (IOM, 2013). The lack of systematic collection of SOGI data contributes to the invisibility of this population, and while an increasing number of health systems and researchers are collecting SOGI data, insufficient attention is paid to establishing standards, including in long-term care (Suen et al., 2022).

The second theme, discrimination against SGM residents by peers, aligns with existing literature highlighting discrimination as a concern for SGM older adults in LTSS facilities (Choi & Meyer, 2016). Studies find that SGM residents experience conflict and are ostracized by other residents, which may result in SGM residents having to hide their identities or “go back into the closet” (Stein et al., 2010). Researchers engaging with SGM residents must consider potential discrimination by peers and ensure participant confidentiality to prevent harm to SGM older adult residents.

The third theme, special considerations in recruitment for SGM older adults living with AD/ADRD, emphasized the importance of preparing for a lengthy consent process that may include family or other caregivers. While the approaches are not specific only to SGM older adults, since SGM older adults have an increased risk of developing AD/ADRD, researchers must be prepared to employ these strategies more often than with heterosexual, cisgender older adults (Fredriksen-Goldsen et al., 2018). Working with both an IRB and LTSS facility staff is crucial for obtaining consent. This finding echoes similar insights from the field about the significance of collaborating with caregivers of SGM individuals with AD/ADRD (Kittle et al., 2022). This includes building trust and person-centered approaches that ensure SGM older adults living with AD/ADRD and their caregivers feel welcomed and supported in study designs, recruitment efforts, and dissemination activities.

Our practical recommendations to address all three themes are preliminary and focus primarily on researcher-facing practices to support future recruitment efforts. Resident-centered follow up and other stakeholder engagement should be considered before implementation.

Transferability and Broader Context:

While our findings offer practical insights, their transferability may be limited due to the study’s geographic and regulatory context. All data were collected from MN-based LTSS facilities, where demographic, cultural, and policy environments may differ from other regions. MN is among the more SGM-affirming states, with legal protections and inclusive healthcare policies in place compared to other states (Movement Advancement Project, 2025). This SGM supportive policy context may contribute to higher levels of awareness and openness among LTSS administrators compared to states with fewer protections or more restrictive policies. Additionally, all religiously-affiliated LTSS facilities were affiliated with Christian denominations, further limiting the transferability of our findings.

In addition, the structure and regulations of assisted living facilities vary across states (Poh et al., 2021). MN maintains relatively strong oversight and licensing requirements, which may shape administrator awareness, training expectations, and practices differently than in states with weaker or more fragmented regulatory frameworks. Our sample also included only Christian-affiliated religious facilities; perspectives from facilities affiliated with other faith traditions were not represented and may reflect different approaches to inclusion.

Study strengths include our diverse sample of LTSS administrators’ facilities, encompassing urban, rural, religious, and non-religious facilities, and the inclusion of both nursing homes and assisted living facilities. Additionally, the study benefited from a diverse multidisciplinary team with extensive knowledge and lived experience, ensuring consistent with a high degree of content validity.

Study limitations include a lack of input from SGM older adults living in LTSS facilities as well as the focus only on MN which can limit the transferability of the findings, as noted above.

Finally, the administrators we interviewed varied in their familiarity with SGM older adults with AD/ADRD, and many described their responses as hypothetical rather than based on direct experience. We also did not collect demographic data on administrators, which may have influenced how themes were interpreted and limited our ability to assess how background characteristics (e.g., training, personal beliefs) may shape attitudes and knowledge about SGM resident inclusion.

Despite these limitations, our findings align with prior qualitative studies identifying similar barriers in SGM inclusion in LTSS and healthcare more broadly. For example, Stein and colleagues (2010) found that fear of discrimination and lack of visibility were primary concerns among older SGM adults in care settings. Choi and Meyer (2016) also identified social isolation and lack of cultural competence as major deterrents to inclusive environments. Our study contributes to this literature by focusing on the perspectives of administrators—key gatekeepers in recruitment—and by incorporating considerations specific to residents with AD/ADRD, a growing and vulnerable segment of the SGM older adult population.

Conclusion and Implication:

Our goal was not to generalize but aim for thematic saturation in interviews and include a diverse sample of LTSS administrators across rural/urban and other settings. Future work should extend sampling strategies that broaden the transferability of findings.

We identified several challenges in recruiting SGM older adults in LTSS facilities. These include challenges in identifying SGM people living in LTSS facilities, the fear of discrimination from other residents as a barrier to self-identification, and the need for tailored approaches to recruit SGM older adults with AD/ADRD in LTSS facilities. Future researchers aiming to engage with this population should be aware of these barriers to recruitment and specific considerations pertinent to SGM residents with AD/ADRD. Future research should center the voices of SGM older adults living in LTSS, particularly those with AD/ADRD, to co-create inclusive research strategies and care practices. Including care partners and exploring structural facilitators of inclusion, such as facility policies and staff education, will be critical next steps. Understanding and addressing these challenges is imperative for researchers seeking to increase the representation of SGM older adults in research.

Supplementary Material

Supplementary1

Table 1.

Characteristics of Interviewees’ Facilities

Interviewed
(N=20)		 Interested in Interview
(N=119)		 Responded to Interview Request
(N=269)
Facility Type
NH 9 (45%) 51 (43%) 112 (42%)
ALF 11 (55%) 68 (57%) 157 (58%)
Metropolitan Status
Urban 12 (60%) 86 (72%) 180 (67%)
Rural 8 (40%) 33 (28%) 89 (33%)
Religious Affiliation
Religiously Affiliated 7 (35%) 39 (33%) 100 (37%)
Non-Affiliated 13 (65%) 80 (67%) 169 (63%)
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Funding statement:

The authors disclosed receipt of the following financial support for the research, authorship, and publication of this article: This work was supported by the National Institutes of Health [5R01AG075734].

Footnotes

Statements and Declarations

Declaration of conflicting interest: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval and informed consent statements: This research was approved by the University of Minnesota IRB (STUDY00016462) on October 29, 2021. Respondents gave written consent for review and signature before starting interviews.

Data availability statement:

Deidentified data is available upon request to the corresponding author.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplementary1
NIHMS2108525-supplement-Supplementary1.docx (14.8KB, docx)

Data Availability Statement

Deidentified data is available upon request to the corresponding author.

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