Scoping Literature Review: Experiences of Sexual and Gender Minority Older Adults, With Diagnoses of Dementia, Who Use Residential Long-Term Services and Supports

Abstract

The number of sexual and gender minority (SGM) older adults utilizing residential long-term supports and services (LTSS) will increase in the forthcoming decades. Paradoxically, while requiring more LTSS services than their non-SGM counterparts, SGM older adults are less likely to access these services, partly due to fears of discrimination. Furthermore, SGM older adults living with Alzheimer’s disease and related dementias (AD/ADRD) present unique challenges and opportunities for LTSS facilities. This article provides a scoping review on the intersection between experiences of SGM older adults with AD/ADRD who use residential LTSS. This review identified three themes: (1) the experiences of discrimination among SGM residents in LTSS facilities, (2) the need for comprehensive staff training in residential LTSS to ensure proper care of SGM populations, and (3) the crucial role of inclusive facility policies. As the number of SGM older adults is expected to increase, further research is necessary.

Introduction

About 2.7 million (or 2.4%) of adults aged 50+ in the USA currently identify as sexual and gender minorities (SGM) (Fredriksen-Goldsen et al., 2018), a figure projected to increase to five million by 2060 (Fredriksen-Goldsen, 2016; Fredriksen-Goldsen & Kim, 2017). The term SGM is promoted by the National Institutes of Health that includes lesbian, gay, bisexual, and transgender (LGBT) individuals, as well as Two-Spirit, queer, intersex, and/or asexual people, and people whose gender identity and/or sexual orientation is something other than cisgender and/or heterosexual (Sexual and Gender Minority Research Office, National Institutes of Health, 2022).

Many older adults rely on long-term services and supports (LTSS) to assist in daily living and other functional and cognitive needs. The administration of LTSS includes care in the community such as home care and residential LTSS such as assisted-living facilities and nursing homes. Older SGM adults disproportionately need residential care LTSS due to lack of familial caregiving and are more likely to expect to rely on institutional long-term care versus their heterosexual peers (Henning-Smith et al., 2015). The number of SGM people utilizing LTSS care is increasing, yet little is known about their experiences of care or the policies in place to support their care needs.

Older SGM adults experience a number of health disparities, including worse physical and mental health outcomes and a greater need for support of their limitations in activities of daily living than their heterosexual and/or cisgender counterparts (Henning-Smith et al., 2015; Travers et al., 2022). Older SGM adults are at increased risk for cognitive impairment (Hsieh et al., 2020; Liu et al., 2020) and Alzheimer’s disease and related dementia (AD/ADRD) (Alzheimer’s Association, 2020; Flatt, 2020; Flatt et al., 2019; Flatt et al., 2018; Perales-Puchalt et al., 2019; Rosenwohl-Mack et al., 2020). Currently, an estimated 240,000–400,000 SGM older adults have cognitive impairment (Fredriksen-Goldsen et al., 2018), 121,000 are diagnosed with Alzheimer’s (Fredriksen-Goldsen et al., 2018), and 350,000 have AD/ADRD (Flatt, 2020). Reflecting the intersectional differences of AD/ADRD, cognitive difficulties are higher among SGM older adults who are African American, Hispanic, living with HIV, transgender, and male (Dragon et al., 2017; Fredriksen-Goldsen et al., 2018). Older SGM adults also experience discrimination in nursing homes and assisted-living facilities (Austin, 2013; Bell et al., 2010; Butler & Hope, 1999; Caceres et al., 2020; Diverse Elders Coalition, 2017; Knochel et al., 2012; Lee & Quam, 2013).

Older SGM adults living with AD/ADRD have a compounded disadvantage in using LTSS. Many have experienced discrimination throughout their lifetime that has only recently begun to shift due to broader societal acceptance and policy change (Gallup, 2022). However, despite the increase in broad societal acceptance, there have been over 100 anti-LGBTQ + laws passed in United States state legislatures since 2018 (Rogers & Radcliffe, 2023). The lived experience of discrimination which older SGM adults have experienced can then become compounded with the addition of a diagnosis of AD/ADRD later in life. For example, heteronormative and heterosexist community and residential care settings can compound difficulties experienced by lesbian and bisexual women living with dementia in ways that do not affect heterosexual-identifying women with dementia (Westwood, 2016). Thus, the cohort of SGM people utilizing LTSS facilities at present is unique from those who will follow them and require additional cohort-specific research.

While there is a growing body of literature on SGM populations, LTSS facilities, and experiences of those living with AD/ADRD, aligning all three topics in a scoping literature review is novel and long overdue. Given the urgent need to deliver high quality LTSS care for older SGM adults, we conducted a scoping literature review to map the publications about SGM older adults in LTSS facilities with attention to the experiences of those living with AD/ADRD.

In doing this work, we were guided by the socioecological model, a theoretical framework that explores how different factors at various levels of influence interact to affect health outcomes. This model recognizes the roles of individual, interpersonal, organizational, community, and policy level factors. By considering the impact of factors at different levels, the socioecological model helps inform the development of effective interventions to improve health outcomes (McLeroy et al., 1988).

Research Design and Methods

Design

We employed a scoping review as the design because of the scant existing literature of the intersection of SGM populations, residential LTSS contexts, and AD/ADRD diagnoses. Scoping reviews are useful in understanding broad questions and to explore novel areas of literature without robust previous review. As such, they have been used successfully to explore areas of emerging research (see Teo et al., 2022; Visser et al., 2021;). No protocol was registered for this review; however, we adapted the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram for our review and utilized its flow diagram to chart our literature. Eligibility criteria include mentioning all three of the following terms (see Figure 1 for full breakdown): SGM, residential LTSS, and AD/ADRD.

Figure 1.

PRISMA flow chart. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021; 372:n71. doi: 10.1136/bmj.n71 For more information, visit: http://www.prisma-statement.org/.

Setting and Population

The setting of studies in our literature review was residential LTSS. Residential LTSS include assisted-living facilities and nursing homes. We note that many residential LTSS contexts differ in funding and structure between the USA and other countries. So, we differentiated between literature from the USA and other countries in our analyses. Our population of interest were people who reside in residential LTSS facilities who also identify as SGM, some of whom live with diagnoses of AD/ADRD. We also included populations directly working with these residents on a case-by-case basis detailed later in this review.

We combined three different groups of terms in our search process: SGM, LTSS, and AD/ADRD. We used established synonyms for these terms within each database we searched. For example, in PubMed, we used 11 terms for our LTSS group, 82 terms for our SGM group, and 12 terms for our AD/ADRD group. For a list of our Medical Subject Headings (MeSH) terms, which are a thesaurus of terms controlled by the National Library of Medicine and used to index PubMed articles, as well as our search term strategy for each database, see supplemental file.

Search Strategy and Selection Process

A first reviewer performed the identification and selection process. A second reviewer cross checked the selections and a third reviewer served as an arbitrator for any disagreement between Reviewers 1 and 2. We queried 10 databases last searched on 01/26/2022 (see Table 1). We did not limit our search to a specific start year. These databases were selected after consultation with an academic librarian with experience in health services research. While we did not limit our search to any specific countries, only articles published in English were included. We did not set temporal restrictions in our search parameters.

Table 1.

List of Databases.

Database

Academic search premier

CINAHL plus with full text

Cochrane Library

Embase Classic + Embase

LGBTQ + source

PAIS index

APA PsychInfo

PubMed

Scopus

Web of Science

Reviewer 1 searched 10 databases (see Table 1) using the key terms. Literature information such as title, abstract, year, citations, etc. were recorded in Microsoft Excel. We identified 298 records from the databases. We removed 77 duplicate records using the automated deduplication function in Excel and additional review of articles prior to screening. This resulted in 221 articles.

From there, the remaining 221 articles were assessed independently by Reviewer 1 to determine if all three topic areas were sufficiently covered and whether it represented original research. In most cases this could be determined based on the abstract, but full publications were reviewed as needed to determine eligibility. Manual screening removed 202 articles, primarily as a result of lacking one of the three topic areas.

After manual screening, 19 empirical studies containing all three topic areas remained. Lastly, two additional articles were found manually by the reviewer, and six additional articles were found via citations. This resulted in 27 articles that were independently reviewed by a second reviewer. See Figure 1 for the PRISMA flow chart of the search and selection process.

The final 27 articles for selection were reviewed by a second reviewer who examined their full text. Articles that were disputed were reviewed by a third reviewer who made a final inclusion/exclusion decision. A total of four articles were excluded from final review via the third-reviewer arbitration process.

Lastly, one article was not reviewed due to a lack of institutional access. Attempts were made to coordinate with other libraries via interlibrary loan systems but were unfruitful. In summary, starting with our 27 articles that met our inclusion criteria according to our first reviewer, four were removed from our second and third reviewer’s examination and one was removed due to lack of access. This left the study team with 22 articles for analysis (see Table 2).

Table 2.

Included Articles.

Author, Year, Title	Study Design	Location	Sample	Key Findings	Themes
Archibald, C. (1998). Sexuality, dementia and residential care: managers report and response	Quantitative cross-sectional survey	United Kingdom	Managers, (n = 23)	“Disinhibition can also result in people with dementia who had previously repressed their homosexual orientation… If heterosexual expression by older people is difficult to contemplate for some staff, homosexual expression is less well tolerated.”	1. Resident experiences of discrimination
Barrett, C., Crameri, P., Lambourne, S., Latham, J. R., Whyte, C. (2015). Understanding the experiences and needs of lesbian, gay, bisexual and trans Australians living with dementia, and their partners	Qualitative in-depth interview	Australia	SGM older adults, (n = 30) Partners, (n = 6) Care staff, (n = 6)	“Aged care service providers need to better understand the experiences and needs of LGBT people living with dementia and advocate to ensure that dementia is not a barrier to expression of sexual orientation and gender.”	2. A need for residential LTSS staff training
Bauer et al., (2013). Sexuality in older adults: Effect of an education intervention on attitudes and beliefs of residential aged care staff	Quantitative training intervention	Victoria, Australia	Care staff, (n = 112)	“Taken together, the findings of this study indicate that an education intervention of relatively short duration can have a significant impact on the permissiveness of staff attitudes towards sexuality of older adults. This includes older adults living in residential aged care and older adults with and without dementia.”	2. A need for residential LTSS staff training
Celdrán et al., (2018). Policies regarding sexual expression in Spanish long-term care facilities for older people	Quantitative cross-sectional survey	Spain	Directors of nursing (n = 152)	“…Although formal recognition of sexualrights and diversity seems to be the norm, specific policies are still not generalized in Spanish LTCFs.”	3. The role of policy in residential LTSS facilities
Doll, G. (2013). Sexuality in nursing homes: Practice and policy	Mixed methods cross-sectional policy survey	Kansas, United States	Administrators, social workers, (n = 91)	“Survey results demonstrate a need for specific policies and staff training regarding sexual expression to be developed with the input of nurses, family members, and residents.”	3. The role of policy in residential LTSS facilities 2. A need for residential LTSS staff training
Donaldson, W., Asta, E., Vacha-Haase, T. (2014). Attitudes of heterosexual assisted living residents toward gay and lesbian peers	Qualitative semi-structured interview	Colorado, United States	Older adults, (n = 13)	“These results appear to demonstrate the presence of homophobia and heteronormativity among residents in ALF settings.”	1. Resident experiences of discrimination
Duffy, F., Healy, J. P. (2014). A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: Rights, decision making and end-of-life care	Qualitative case reviews	Australia	Older adults, (n = 4)	“...Social workers need to be more actively engaged with identifying and supporting the needs, wants, and rights of LGBTI people...”	2. A need for residential LTSS staff training
Knochel & Flunker, (2021). Long-term care expectations and plans of transgender and nonbinary older adults	Qualitative semi-structured interview	Minnesota, United States	Older adults, (n = 24)	Long-term care facilities can develop policies that ban TNB-based discrimination; provide guidance to staff, residents, and residents’ families about language and practices that maintain the safety and dignity of TNB residents; and enforce these policies. Frequent training to reach certified nursing assistants and other workers in high turnover positions and across schedules, training that deepens awareness and focuses on implementation, and mandatory training for management and frontline staff may improve the effectiveness of these efforts.”	3. The role of policy in residential LTSS facilities 2. A need for residential LTSS staff training
Marshall et al., (2015). Gender dysphoria and dementia: A case report	Qualitative case report	England	Older adults (n = 1)	“Future research about the relation between memory and gender identity is needed.”	3. The role of policy in residential LTSS facilities
McParland & Camic, (2018). How do lesbian and gay people experience dementia?	Qualitative semi-structured interview	United Kingdom	SGM older adults and partners, (n = 10)	“Staff training that includes issues in diversity, sexuality, inclusive practice and respect for differences may help to enhance health and social care environments and reduce stigma and discrimination.”	2. A need for residential LTSS staff training
Pereira et al., (2020). Aging perceptions in older gay and bisexual men in Portugal: A qualitative study	Qualitative structured electronic interview	Portugal	Older adults, (n = 25)	“It is therefore important that all professionals examine their own ideas and prejudices of same-sex attracted people to deliver competent and culturally safe care...In addition, professionals working with older gay and bisexual men need to ensure that healthcare environments are open, respectful, and use inclusive language.”	1. Resident experiences of discrimination
Price, (2012). Gay and lesbian carers: Ageing in the shadow of dementia	Qualitative semi-structured interview	England	LGBT caregivers, (n = 21)	“It is perhaps necessary for providers of services to older people generally to provide spaces, practices, language and symbols that suggest services are provided in genuinely nondiscriminatory environments.”	3. The role of policy in residential LTSS facilities 1. Resident experiences of discrimination
Putney, J. M., Keary, S., Hebert, N., Krinsky, L., Halmo, R. (2018) “Fear Runs deep”: the anticipated needs of LGBT older adults in long-term care	Qualitative Focus groups	NE United States	Older adults, (n = 50)	“The stressors expressed by the LGBT older adults in this study are unique and additive: Fear of encountering prejudice and receiving poor care based on sexual orientation, gender identity, and gender expression; anticipatory stress related to concealing their identities; and associated suicide ideation.”	1. Resident experiences of discrimination
Seelman, (2019). Differences in mental, cognitive, and functional health by sexual orientation among older women: Analysis of the 2015 behavioral risk factor surveillance system	Quantitativecross-sectional data from BRFSS	United States	General population SGM (n = 346) HET (n = 34,361)	“This research supports the recommendations of other scholars regarding the value of ensuring adequate training and LGB competency among aging services providers), particularly in terms of long-term services and supports, given that sexual minority women experienced greater problems with cognitive and functional health and may need additional supports with IADLs.”	2. A need for residential LTSS staff training
Simpson et al., (2017). The challenges and opportunities in researching intimacy and sexuality in care homes accommodating older people: a feasibility study	Qualitative semi-structured interview, feasibility study	England	LTSS residents, (n = 3) Spouses, (n = 3) Care staff, (n = 16)	“...Three main themes: The effects of ageist erotophobia; forms of resistance/challenge to such thinking; and the need to ensure inclusivity and sensitivity in researching sexuality and intimacy.”	1. Resident experiences of discrimination 2. A need for residential LTSS staff training
Villar, F., Serrat, R., Fabà, J., Celdrán, M. (2015). Staff reactions toward lesbian, gay, or bisexual (LGB) people living in residential aged	Qualitative semi-structured interview	Spain	Care staff (n = 53)	“First, our research highlights the importance of developing formal policies that could address the specific needs of older LGB people living in RACFs...The second implication of our findings is that the issue of sexual orientation and disclosure should be addressed during the formal training offered to healthcare professionals.”	3. The role of policy in residential LTSS facilities 2. A need for residential LTSS staff training
Ward, (2000). Waiting to be heard: Dementia and the gay community	Qualitative case study	United Kingdom	Older adults, (n = 2) Caregiver, (n = 1)	“The experience of members of the gay community affected by dementia would suggest the need for a radical re-think in how services are structured and provided.” “Clearly, service providers need to thing about communities according to identity, not just geography. Until then, the voice of the gay person affected by dementia is unlikely to be heard.”	2. A need for residential LTSS staff training
Ward, R., Vass, A. A., Aggarwal, N.,Garfield, C., Cybyk, B. (2005). A kiss is still a kiss? The construction of sexuality in dementia care	Mixed methods semi-structured interviews, analysis of care home documentation, observations	United Kingdom	LTSS residents, (n = 17) Care staff, (n = 27)	“This finding supports existing calls for a need for both training and a clearly stated policy on sexuality and sexual issues in care settings that incorporate an attention to both the interests of residents and the support needs of care workers.”	3. The role of policy in residential LTSS facilities 1. Resident experiences of discrimination 2. A need for residential LTSS staff training
Westwood, S. (2016). “We see it as being heterosexualised, being put into a care home”: Gender, sexuality and housing/ care preferences among older LGB individuals in the UK.	Qualitative, semi-structured interviews	United Kingdom	Older adults (n = 60)	“The analysis identified several key themes underpinning older LGB individuals’ concerns about mainstream sheltered accommodation and residential care, namely: Lack of visibility, risky visibility, unequal openness and compulsory cooccupation of care spaces.”	1. Resident experiences of discrimination
Westwood, S. (2016). Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women	Qualitative semi-structured interview	United Kingdom	Older adults, (n = 36)	“It shows how heteronormative and heterosexist community and residential care provision can compound the difficulties experienced by lesbian and bisexual women living with dementia, in ways which do not affect heterosexual-identifying women with dementia It also highlights the paradox that those women most likely to require community and residential care provision for individuals with dementia — lesbians and bisexual women — are least likely to have their identities recognised and supported.”	1. Resident experiences of discrimination
Willis et al. (2016). Swimming upstream: The provision of inclusive care to older lesbian, gay and bisexual (LGB) adults in residential and nursing environments in wales	Qualitative focus groups, semi-structured interview	Wales	Care staff, (n = 14) Managers, (n = 27) Residents, (n = 29)	“We suggest that an essential element to taking forward this change agenda is the requirement to integrate recognition of residents’ sexual biographies with current practice concepts of individualised and person-centred care.”	3. The role of policy in residential LTSS facilities 2. A need for residential LTSS staff training
Witten, T. (2015). Elder transgender lesbians: Exploring the intersection of age, lesbian sexual identity, and transgender identity	Mixed methods, cross-sectional data from TMLS	International, English-speaking	Older adults (n = 276)	“Of particular concern to our respondent population were issues surrounding all aspects of later-life healthcare, treatment, inability to live out their respective lives as their true selves, and dementia.”	1. Resident experiences of discrimination

Data Extraction and Synthesis

Articles included for final review were entered in a data matrix by two reviewers that captured publication information such as citation, key words, and source as well as research design, study location, and major conclusions. For a full list see Table 2. Key themes were also identified by reviewers and recorded in the data matrix.

Results

After the selection process, 22 articles were included in the final review. Of the 22 studies, five were conducted in the United States, with four of these focusing on individual states. Of the 17 remaining studies, 10 were located in the United Kingdom, three in Australia, two in Spain, one in Portugal, and one covered multiple English-speaking countries.

Only four of the studies were quantitative, with three employing cross-sectional surveys and one evaluating an intervention. Of the 22 final articles, 15 were qualitative. Of these, 10 used individual interviews, one used only focus groups, one used both individual interviews and focus groups, and three were case studies. The final three were mixed methods, and combined survey data with observations and interviews.

In nine of the studies, the population of interest was SGM older adults. In six studies, the population of interest was residential LTSS staff or caregivers, with two studies focusing on direct care staff, three on residential LTSS administrators, and one on non-professional caregivers. The remaining seven studies included both SGM older adults and caregivers or residential LTSS staff. The sample size in these studies ranged from a single person in a case report to 152 participants in a survey of directors of nursing. The average sample size of these was 43 participants. Of note, two studies were secondary data analyses of existing nationally representative surveys (the Behavioral Risk Factor Surveillance Survey (BRFSS) and the Transgender MetLife Survey (TMLS). The sample sizes for these two studies are very large and not included in the previous average statistic. Finally, consistent with this being a new area of study, 18 of the 22 studies (82%) were published within the last 10 years, with the remaining four published between 1998 and 2012.

Main Themes

We identified three interconnected themes related to care experiences of SGM residents with AD/ADRD in residential LTSS facilities. The first theme is focused on residents’ experiences of discrimination and poor treatment from both care staff and non-SGM residents. The second theme identifies the need for more comprehensive training for residential LTSS staff, particularly around caring for SGM residents with AD/ADRD who have complex care needs. The final theme centers on the impact and need for facility non-discrimination policies and inclusive intake practices for new residents. These three themes map onto the socioecological model and reflect individual, interpersonal, and organizational level factors needed to improve the experience of SGM older adults with AD/ADRD, using LTSS. The themes are displayed visually on the socioecological model adapted from McLeroy et al.’s (1988) work in Figure 2.

Figure 2.

Study themes and the socioecological model.

Theme 1: Resident Experiences of Discrimination

The first theme centers around SGM residents’ experiences of discrimination from both care staff and other residents in residential LTSS facilities. This theme was identified in 10 of 22 (45%) manuscripts, which included qualitative interviews with SGM residents, residential care staff, and families of SGM residents, as well as two cross-sectional surveys. These interviews found SGM residents experienced persistent homophobia and heterosexism, from both care staff and other non-SGM residents (Archibald, 1998; Donaldson et al., 2014). For example, themes from interviews with residents in an assisted-living facility reflected, “a general trend that gay and lesbian residents are still very much ‘the other’ in an ALF setting,” (Donaldson et al., 2014). In a study with residential care staff on sexuality in residential LTSS, Archibald noted, “if heterosexual expression by older people is difficult to contemplate for some staff, homosexual expression is less well tolerated” (1998). Additionally, for SGM residents with dementia, these discriminatory attitudes from care staff and other residents led to compounded difficulties, which are noted in one study as follows:

Services which do not recognize, validate, and support the identities and lived experiences of lesbian and bisexual women with dementia will compound their anxiety, confusion, and distress, particularly as their dementia-related symptoms progress. In this way, sexuality adds a further dimension to issues of identity and memory in dementia care contexts. (Westwood, 2016)

A key subtheme of these experiences of discrimination is that the knowledge of discrimination toward SGM residents leads SGM older adults to fear using residential LTSS facilities. This is sometimes known as expecting rejection, or anticipated discrimination (Reisner et al., 2015; Rood et al., 2016). This subtheme is identified in four of the 10 manuscripts in this theme, and it was primarily highlighted in interviews with SGM older adults. One study asked participants to write about any worries or concerns around aging, and shared that many respondents wrote about, “discrimination by caregivers, fears of cruelty and abuse, fears of being homeless, or dementia, and fears of not being allowed to live their final years as their true selves,” (Witten, 2015). These concerns around loss of identity and poor treatment from care staff were echoed in a 2018 study, which is highlighted below:

Participants pointedly addressed their concerns about whether, as an LGBT-identified person, they could entrust their safety and well-being to healthcare providers in the event of cognitive impairment. They wondered if their providers would be flexible and understanding enough to respond appropriately if they were to ‘regress’ to a time when they were not out of the closet or identified with their ‘birth gender’. (Putney et al., 2018)

Theme 2: Need for Residential LTSS Staff Training With Attention to Residents with AD/ADRD

The second theme illustrates the need for residential LTSS staff to receive comprehensive training around caring for SGM residents, especially those with AD/ADRD. This theme was identified in 12 of 22 (55%) manuscripts, which primarily focused on narratives from staff, residents, and families that care staff did not receive sufficient training for working with SGM residents with AD/ADRD. These studies used a variety of qualitative methods, including interviews, observations, and focus groups. One article noted, “LGB identities and histories were equally absent from staff development activities. No one recalled receiving training about issues of sexuality, identity, and equality” (Willis et al., 2016). The most common recommendations from the reviewed articles were that comprehensive training should include sections related to non-discrimination, respecting residents’ sexuality and gender identity, using inclusive intake forms and practices, and preparation for caring for SGM residents with AD/ADRD.

There were several recommendations for what should be included in comprehensive training programs for residential care staff. First, training should emphasize non-discrimination in care practices, as well as intervening in discriminatory situations between heterosexual and SGM residents. One study emphasizes this as follows: “being prepared to challenge the oppressive views expressed by residents is a mandatory requirement, particularly when these expressions compromise the rights of other residents to feel safe in their home environments” (Willis et al., 2016).

Second, facilities should incorporate more inclusive intake forms and practices to ensure that all residents feel welcome when they move in. Duffy and Healy suggest using intake forms that go beyond asking marital status, and state that, “more appropriate questions should relate to relationship status, present or past” (2014).

Third, training programs should emphasize the importance of respecting residents’ sexuality and gender identity. One study explains, “respecting individual personhood involves recognizing preferences and wishes such as choice of clothing, gender of carers, and language used to describe identities and relationships” (Willis et al., 2016).

Fourth, care staff should receive more comprehensive preparation for caring for SGM residents with AD/ADRD. Barrett writes, “aged care service providers need to better understand the experiences and needs of LGBT people living with dementia and advocate to ensure that dementia is not a barrier to expression of sexual orientation and gender” (2015). This includes training on LGBT history so that care staff are cognizant of residents’ lived experiences and history of discrimination, as well as understanding the unique challenges of AD/ADRD for SGM residents.

Finally, the studies recommended the need for facility policies that establish more comprehensive training programs. This subtheme was identified in 5 of the 12 manuscripts included in this larger theme, and it highlights the key role that policy can play in creating facility-level changes. The impact of facility policies on staff training is best summarized in the results of Ward and colleagues’ (2005) study. They write, “this finding supports existing calls for a need for both training and a clearly stated policy on sexuality and sexual issues in care settings that incorporate an attention to both the interests of residents and the support needs of care workers” (Ward et al., 2005).

Theme 3: The Role of Policy

The final theme highlights the role of policies in residential LTSS facilities to address the experiences of discrimination from Theme 1 and enact the training and other recommendations from Theme 2. This theme was identified in 8 of the 22 (36%) manuscripts, which included articles that reviewed existing policies and examined the need for future policies. These policies are facility-level guidelines that stipulate the duration and content of staff training, resident information collected during the intake process, and non-discrimination standards for both care staff and residents. For this literature review, the articles focused on these policies as they pertained to SGM residents, especially those with AD/ADRD. The importance of facility policies is noted by Willis and colleagues, who write:

Cultural change in homes also entailed communicating to visitors and new residents the values of the organization. While the effectiveness of written policies was given little credence, some managers suggested including an assertion about LGB residents in the agency’s statement of purpose... The intention behind this statement is to communicate to potential residents and significant others that this care home is an inclusive environment in which diverse groups of older people are equally valued. (2016)

One group of these policies is centered on SGM residents’ identities, treatment from care staff, and living experiences in LTSS communities. These resident-centered policies are the primary focus of four manuscripts. Facility policies outside the need for training, mentioned above, include incorporating sexual orientation and gender identity (including pronouns) on intake forms and explaining what they are, non-discrimination protections from care staff and other residents, and formal recognition of resident rights. Researchers focused heavily on expanding existing non-discrimination policies, as well as creating new policies for residential LTSS facilities that would protect SGM residents with AD/ADRD from poor treatment (Villar et al., 2015).

Another group of residential LTSS facility policies concerned LTSS care staff, with a focus on staff training, non-discrimination, and care behaviors. These staff-centered policies are the focus of five manuscripts. Specific policies include mandating comprehensive training that includes care for SGM residents with AD/ADRD, stricter non-discrimination policies, and higher standards of care behaviors. This group is closely related to Theme 1, which highlights the ways in which policy is an important tool for improving staff training. Additionally, as with the articles that focused on resident-specific policies, researchers discussed the positive implications of expanding current non-discrimination and training policies, as well as the potential outcomes of creating new policies for staff training and care behaviors (Doll, 2013).

Discussion and Implications

Compared to previous reviews on this topic (Smith & Wright, 2021), which focused on older community-dwelling SGM adults, our review emphasizes the intersectionality of SGM, AD/ADRD, and LTSS, revealing the additional challenges faced by SGM older adults with AD/ADRD. Despite a growing proportion of older SGM adults who need LTSS, there is a disproportionate lack of research on their care needs. Out of the 22 articles that met the inclusion criteria, the findings consistently reported high levels of discrimination among SGM older adults who use LTSS and a particular gap in quality of care for those with AD/ADRD. This review highlights the urgent need for policy interventions and staff training to address unmet needs of SGM older adults in residential LTSS.

Key Findings and Theoretical Framework

Our review identified three key themes that align with the socioecological framework: (1) individual experiences of discrimination due to shared identities of being SGM and living with AD/ADRD; (2) interpersonal aspects of staff/resident relationships that require staff training, with particular attention to those with AD/ADRD; and (3) the need for structural, institutional change via facility policies that implement staff training. While the studies did not specifically address the role of community and policy level factors, these remain important levels of influence to consider in promoting equitable care for SGM older adults with AD/ADRD who need LTSS. The three identified themes were consistent with other research on the experiences of SGM older adults, which documented fears of discrimination by SGM older adults from care providers (Caceres et al., 2020; Kortes-Miller et al., 2018).

The first and most prevalent theme focused on SGM older adults’ fear of loss of identity and experiences of discrimination related to sexuality and gender identity. While the fear of loss of identity is not specific to SGM people, their marginalized status creates a cumulative scenario where some of the support structures that are in place may be negatively affected. As supported by several studies, the fear of loss of identity is especially salient in populations of SGM people (Putney et al., 2018; Westwood, 2016; Witten, 2015). Many SGM people have built robust support networks where their identity as an SGM individual is often a source of connection to other SGM individuals, especially in older age cohorts who have faced greater historical oppression than their younger counterparts on average (Wardecker & Johnston, 2018). However, moving to an LTSS facility can result in a loss of these protective social networks due to becoming isolated from the existing social supportive networks, thus making older adults especially vulnerable. For those SGM people living with dementia, isolation can be exacerbated as cognitive function declines.

Themes 2 and 3, which related to facility factors on the need for staff training and structural factors on the need for policies, were mutually reinforcing. For example, institutional policy changes must occur to enable interpersonal training on SGM competent care. Similarly, a singular training is not nearly as effective as sustained training which is enabled by institutional policies which support them. However, individual training, over time, can also influence institutional culture and policy which in turn can facilitate additional educational opportunities around SGM residents. While it is difficult to say which happens first in regard to the training-policy interrelationship, Rosser and colleagues point to training as a good first step in the process to ultimately influence policy (2023).

Intersectionality, Cohorts, and Role of AD/ADRD

It is important to consider the historical events and the cohort differences of older SGM people using LTSS, as many of them have faced greater historical oppression than their younger counterparts. It is important to understand cohort differences in the context of older SGM people in LTSS facilities at any given point in time. While population level estimates of SGM people exist, when conditioned on age cohort, older cohorts are less likely to self-identify as SGM than younger cohorts (Gallup, 2023). The United States HIV/AIDS epidemic of the 1980s and 1990s caused a disproportionately high level of AIDS-related deaths for gay men and created a cohort effect where their social networks and supports were decimated (Rosenfield, 2012). Furthermore, SGM people who are members of older age cohorts that are engaging with LTSS services have lived through several major events concerning their rights and liberties that many younger SGM people have not experienced (Flatt et al., 2022). For example, the Stonewall Riots of 1969 and the American Psychological Association removing homosexuality as a mental illness in 1973 were major events that older adults may have lived through depending on age. Furthermore, the HIV/AIDS epidemic starting in the 1980s was another major event for SGM people, especially gay and bisexual men. More recently, the enactment of the Defense of Marriage act in 1996 and its repeal in the 2015 United States Supreme Court Case Obergefell v. Hodges encapsulates the dynamic change older SGM people have experienced in their lives. Sadly, in recent years there has been a spike in anti-SGM political activity in states across the USA, with accusations of “grooming” youth reminiscent of Anita Bryant’s “Save Our Children” campaign in Miami-Dade County in 1977, and the Briggs Initiative of 1978, which sought to ban homosexuals from teaching (Cahill, 2004; Krishnakumar & Cole, 2022; Ring, 2018; Yurcaba, 2022). This resurgence of anti-SGM political activism is evidence of the continued need for staff training and non-discrimination protections for SGM residents of LTSS. It is also likely that for many SGM older adults it is traumatizing to hear arguments and slurs that they thought had ended decades ago. As such, the specific experiences of SGM older adults also presents a unique vulnerability of decades of compounded discrimination and trauma, which can influence their expectations of treatment in LTSS facilities and can even influence their decisions to go “back in the closet” to avoid mistreatment (Knauer et al., 2009).

Gaps in Existing Literature

Our scoping review aimed to examine the current state of research on the experiences of SGM older adults with AD/ADRD in LTSS. Our review revealed several gaps in the existing literature, such as lack of methodological variation and reliance on small sample sizes and potential lack of transferability to other cohorts.

Our review revealed a lack of methodological variation in the included studies. More than half of the studies (15 studies, or 68%) were qualitative, with a mean sample size of 29 and a median sample size of 24. Of the qualitative studies, 12 out of 15 were semi-structured interviews or focus groups, with the remaining focusing on case reports. Future research should engage in more varied research methods including more mixed methods and quantitative-focused research and population-based samples.

We identified generational differences as an important context for our findings. As more SGM adults age into LTSS, their experiences may differ from those currently in LTSS due to changes in social acceptability and public policy for SGM people. Therefore, current cohorts of SGM older adults in residential LTSS facilities are a distinct population and will likely have notable differences when compared to future cohorts of SGM older adults.

Limitations

We faced several limitations in our review. First, while there is a substantial literature on LTSS, SGM, and persons with AD/ADRD individually, the literature on SGM living with AD/ADRD in residential LTSS is very limited. Second, we found no studies with large quantitative samples that assessed the experience of discrimination towards SGM with AD/ADRD in LTSS, despite discrimination being reported as common. Given the vulnerability of this group, it is crucial that researchers address this gap in the literature to facilitate broader generalizability. It is important to note that the reasons for this gap are multifaceted, underscoring significant challenges in recruiting large samples for quantitative work in this area. The void in research also underscores the pressing need for increased funding and a greater emphasis on this critical subject matter. Finally, our focus was on older adults using residential LTSS but more work is needed on the experiences of care for SGM older adults receiving LTSS across a variety of settings and transitioning between types of care. Despite these limitations, our focus on residential LTSS for SGM older adults with AD/ADRD is important for several key reasons.

First, many of our reviewed studies noted concerns from SGM residents about discrimination from other, non-SGM residents. This peer discrimination may not be as common within non-residential settings, when one is residing in their own home, but it is an important issue to address as many SGM older adults will need residential care due to growing health needs and often not having a family caregiver present to enable remaining at home. Second, we identified facility policies as a key theme in the literature, with policies regarding non-discrimination among residents being particularly important. These policies would not be as relevant for older adults in home and community-based services (HCBSs). Therefore, understanding the experience of SGM older adults in residential LTSS is critical for improving the quality of care for this population.

Conclusions

In conclusion, our scoping review highlights the need for more research on the experiences of care that SGM people with AD/ADRD receive in LTSS. We identified the need to focus on policy interventions to address discrimination and improve outcomes as well as the need for more research funding in this area. Overall, our findings reinforce existing calls from the field to conduct more research on SGM people utilizing LTSS care, especially those who are living with AD/ADRD.

What this paper adds to the literature

• This paper documents experiences of SGM older adults with AD/ADRD in residential LTSS facilities.

• This paper fills a gap in the research at the intersection of these three topics and sets up a basis for future research on this topic.

• This paper shows the importance of and need for inclusive facility policies and comprehensive staff training to meet the needs of the growing number of SGM older adults.

Application of study finding

• Need for better facility policies informed by what residents, family, and care staff would like to see, especially for SGM residents with AD/ADRD.

• Need for more comprehensive staff training that specifically addresses SGM residents with AD/ADRD.

• Resident experiences of discrimination can be a driver for creating non-discrimination policies.

Data Availability Statement

Data Sharing: Our data matrix and articles sorting matrix is available on request. There is no original data used in our manuscript.