Safer dementia care spaces: Perspectives from LGBTQ+ people with cognitive impairment and caregivers

Abstract

The number of caregivers and people living with dementia and other related forms of cognitive impairment is increasing worldwide. Compared to heterosexual and cisgender individuals, studies suggest that lesbian, gay, bisexual, queer, or other sexual and/or gender minority people (LGBTQ+) are at a higher risk for known risk factors for cognitive impairment and dementia, stemming from minority stress experiences. Limited research has explored the distinct obstacles that LGBTQ+ people with cognitive impairment and caregivers encounter, especially within dementia care. The purpose of this study was to deepen our understanding regarding LGBTQ+ people with cognitive impairment and caregivers’ experiences with dementia care spaces, and to identify the strategies that they perceive as effective in creating safer and more inclusive spaces. Fourteen LGBTQ+ participants aged 27–78 (M = 58.07), consisting of two individuals with cognitive impairment and 12 caregivers, were interviewed about the care needs of LGBTQ+ people with cognitive impairment and caregivers, and their experiences with dementia care spaces. Using reflexive thematic analysis, we identified three overarching themes from the data, indicating that LGBTQ+ people with cognitive impairment and caregivers feel left “on the margins” of dementia care and express a desire for their identities to be celebrated and recognized. Additionally, they proposed recommendations for policy change to foster safer and more inclusive spaces for dementia care. The findings call attention to the negative experiences of LGBTQ+ people with cognitive impairment and caregivers with dementia care, but also highlight the ways in which care practices can be transformed to effectively address their care needs.

Introduction

Cognitive impairment and dementia can impact both the people diagnosed with these neurocognitive disorders and their caregivers in various ways. Caregivers may report feelings of burnout and caregiver burden (Gérain & Zech, 2022; Sheehan et al., 2021) and are faced with a range of emotional, social, and financial demands (Matthews et al., 2019), whereas people with dementia and other related forms of cognitive impairment commonly experience psychological and emotional symptoms, including memory loss, changes to executive functioning, and depression symptoms. The experiences of caregivers and people with cognitive impairment who are lesbian, gay, bisexual, transgender, queer, or another sexual and/or gender minority (LGBTQ+) require further research attention, given the unique sociohistorical contexts and social locations experienced by members of these communities.

LGBTQ+ older adults have historically been marginalized and lived through periods when being LGBTQ+ was pathologized (e.g., homosexuality classified as a psychological disorder in the Diagnostic and Statistical Manual of Mental Disorders; Allen & Lavender-Stott, 2020; Fredriksen-Goldsen et al., 2018; Fredriksen-Goldsen & Kim, 2017). LGBTQ+ older adults have also endured experiences of discrimination throughout the life course. In their study with a sample of 2,560 LGBTQ+ older adults, Fredriksen-Goldsen et al. (2011) found that about two-thirds of LGBTQ+ older individuals reported more than three incidents of victimization in their lives, including receiving verbal insults and threats of physical violence.

These systemic and social inequities that LGBTQ+ older people have historically endured for decades continue to have a negative impact on their lives throughout the aging experience (Brotman et al., 2003). Researchers have found that LGBTQ+ older adults are at a greater risk of poor health outcomes compared to heterosexual and cisgender peers, including chronic physical and mental health conditions (Fredriksen-Goldsen et al., 2017; Stinchcombe et al., 2018; Zeeman et al., 2019). Health disparities among members of LGBTQ+ communities are understood through minority stress theory (Meyer, 2003), which emphasizes that negative mental and physical health outcomes stem from experiencing stressors connected to one’s minority status (e.g., homophobia, stigma). From the life course theoretical perspective, the experience of minority stressors accumulates over the course and worsens health outcomes in older adulthood (Dannefer, 2003).

Sexual minority and transgender older adults can experience marginalization (e.g., homophobia and transphobia) throughout their lives, which contributes to health disparities that can accumulate over the life course and may increase the risk of cognitive impairment and Alzheimer’s and other related dementias (Adkins-Jackson et al., 2023; Correro & Nielson, 2020). In a study conducted by Flatt et al. (2018) with a sample of 210 LGBTQ+ people aged 50+, researchers found that about 25% of participants reported living with subjective cognitive decline, a risk factor for dementia. In a sample of 3,567 adults aged 50–97 who responded to the 2015–2016 National Social Life, Health, and Aging Project, lesbian, gay, and bisexual participants were 2.07 times more likely to self-report symptoms of early dementia or mild cognitive impairment than heterosexual participants after controlling for sociodemographic variables (Hsieh et al., 2021).

Unique experiences of LGBTQ+ caregivers and people with cognitive impairment

Caregivers who are LGBTQ+ are a unique community as they are not only subject to the stressors of caregiving, but also minority stress. Results from a longitudinal study conducted by Fredriksen-Goldsen et al. (2022) indicated that the physical and psychological health-related quality of life (HQROL) of sexual and gender minority caregivers decreased over a three-year period, with day-to-day discrimination being negatively associated with both psychological and physical HQROL. With regard to sexual and gender minority caregivers of people with dementia specifically, microaggressions, day-to-day discrimination, and caregiver stigma were found by Anderson et al. (2021) to be positively associated with depressive symptoms. Further, there are unique differences in characteristics between LGBTQ+ caregivers and their non-LGBTQ+ counterparts. Some studies have supported that LGBTQ+ older adults are more likely to be caregivers compared the non-LGBTQ+ population (Fredriksen-Goldsen et al., 2011; Ismail et al., 2020); it has also been suggested that gay and bisexual men are more likely to provide care than heterosexual men (Ismail et al., 2020). LGBTQ+ older adults also often provide informal care to their spouses, romantic partners, friends, and other loved ones, creating a mutual relationship where both individuals are cared for (Fredriksen-Goldsen et al., 2011; Ismail et al., 2020; Shiu et al., 2016). However, older lesbian, gay, and bisexual individuals have fewer supports compared heterosexual individuals (Fredriksen-Goldsen et al., 2013); for instance, they are four times less likely to have children than their non-LGBTQ+ peers (Espinoza, 2011). As LGBTQ+ caregivers are at a risk of experiencing various health problems that stem from minority stress, the difficulties that commonly arise from caregiving duties may worsen any pre-existing health conditions (Fredriksen-Goldsen, Jen, et al., 2022).

Apart from caregivers, some studies suggest that LGBTQ+ people with cognitive impairment may also have unique challenges and experiences throughout the dementia course (Baril & Silverman, 2022; Barrett et al., 2015; Cousins et al., 2020; Harper, 2019; McParland, 2015; Peel & McDaid, 2015). Dementia can cause memory loss, confusion, and deficits in executive functions, such as disinhibition. As a result, LGBTQ+ people may disclose aspects of their sexual and/or gender identity that they were previously uncomfortable with sharing and may forget who they disclosed this information to (Cousins et al., 2020). Further, in a qualitative study examining how lesbian, gay, and bisexual individuals experience dementia, some participants expressed receiving negative reactions based on both their sexual orientation and dementia diagnosis, creating a “double stigma” (McParland, 2015).

Despite current research suggesting that LGBTQ+ people with cognitive impairment and caregivers experience the course of caregiving and cognitive impairment differently, LGBTQ+ older adults continue to face barriers and challenges in receiving and accessing healthcare and support services (Di Lorito et al., 2022; Stinchcombe et al., 2017; Valenti & Katz, 2014). They also hold many fears and concerns regarding entering formal dementia care spaces, such as long-term care, commonly centering around minority stress (e.g., stigma, discrimination, disclosing sexual/gender orientation) and social isolation (Kortes-Miller et al., 2018; Putney et al., 2018; Wilson et al., 2018). In the context of this study, dementia care spaces are understood as a range of environments where both informal and formal care for people with cognitive impairment is provided. These spaces include, but are not limited to, private residences, community settings, community centers offering respite or adult day care programs, medical facilities such as doctor’s offices and hospitals, long-term care homes, and hospice settings. Most people living with dementia live in private homes in the community and wish to remain at home for as long as possible, often receiving informal (e.g., family, friends) and formal (e.g., meal deliveries, homecare) care (Tochel et al., 2019). As Phillipson et al. (2021) argue, people with dementia live and manage their lives beyond formal care settings, in communities with outdoor, public, and shared spaces. As support needs increase, people with dementia may transition to more supportive environments, such as long-term care. Evidence suggests that almost 50% of residents in long-term care have some form of dementia (Alzheimer’s Association, 2020). Adopting a broad approach to understanding dementia care and recognizing the significance of ‘place’ for both people with dementia and caregivers, creating safe environments for LGBTQ+ caregivers and individuals living with dementia is crucial for ensuring equitable care.

Drawing on minority stress theory and considering the unique experiences and trajectories of LGBTQ+ caregivers and people with cognitive impairment, this study was developed to gain further insights into the experiences of LGBTQ+ caregivers and people with cognitive impairment within dementia care spaces, and approaches that they believe can be used to make these spaces safer and more inclusive.

Methods

Participants

Two groups of individuals participated in this study: LGBTQ+ people with cognitive impairment, and LGBTQ+ caregivers for people with cognitive impairment. These two groups were selected for their firsthand expertise and experiences in dementia care, living with dementia, and lived experiences as LGBTQ+ people, ensuring a comprehensive understanding of safety considerations in dementia spaces. These perspectives were considered complementary, given that both caregivers and people with cognitive impairment have lived experiences interfacing with dementia care spaces; it allowed us to move beyond person centred care and consider dyads of care and care within families (both chosen and of origin).

Fourteen LGBTQ+ people participated in the current study, with ages ranging from 27–78 (M = 58.07). The sample consisted of 2 individuals with cognitive impairment and 12 caregivers. Participants reported their sexual orientations as gay (n = 7), bisexual (n = 2), lesbian (n = 2), and queer (n = 1). Participants reported their genders as man (n = 5), woman (n = 2), trans (n = 3), and epicene (n = 1). The majority of participant were white (n = 13). As geography was not an exclusion criterion and the interviews took place virtually, most participants resided in Canada; however, two participants resided in Europe. See Table 1 for more information regarding the sample demographics.

Table 1.

Sample demographic characteristics.

Age	Gender Identity	Sexual Orientation	Location	Caregiver or person with cognitive impairment	Description
29	Trans-masculine	Not disclosed	Canada	Formal caregiver	Caregiver working in a long-term care facility.
65	Epicene	Gay	Ireland	Person with cognitive impairment	Person with cognitive impairment living independently with limited care supports.
26	Man	Gay	United Kingdom	Formal caregiver	Caregiver working in a long-term care facility.
41	Trans	Queer	Canada	Informal caregiver	Caregiver providing care for romantic partner who is a person with cognitive impairment.
63	Man	Gay	Canada	Person with cognitive impairment	Person with cognitive impairment receiving care from romantic partner (5a).
60	Man	Gay	Canada	Informal caregiver	Caregiver providing care for romantic partner (5b).
57	Man	Gay	Canada	Informal caregiver	Caregiver providing care for mother who is a person with cognitive impairment.
27	Trans-non-binary	Not disclosed	Canada	Informal caregiver	Caregiver providing care to grandfather who is a person with cognitive impairment.
61	Woman	Lesbian	Canada	Informal caregiver	Caregiver providing care for wife who is a person with cognitive impairment.
78	Man	Gay	Canada	Informal caregiver	Providing care to a friend who is a person with cognitive impairment and lives independently.
55	Man	Gay	Canada	Informal caregiver	Caregiver providing care for mother who is a person with cognitive impairment and lives in long-term care.
59	Woman	Lesbian	Canada	Informal caregiver	Caregiver providing care for mother who is a person with cognitive impairment and lives in long-term care.
69	Man	Bisexual	Canada	Informal caregiver	Caregiver providing care for brother who is a person with cognitive impairment and lives in long-term care
65	Woman	Bisexual	Canada	Informal caregiver	Caregiver providing care for mother who is a person with cognitive impairment and lives in long-term care.

Participants were recruited through mailing lists of several regional organizations focused on supporting LGBTQ+ older adults (e.g., Senior Pride Networks), older adults more broadly (e.g., Senior Centres), and people living with cognitive impairment, including dementia (e.g., local chapters of the Alzheimer Society). The study was also publicly advertised through posts of the recruitment poster on various social media platforms (e.g., Facebook, Twitter). Participants were eligible to participate if: they identified as a member of LBGTQ+ communities; they were able to participate in a semi-structured interview via Zoom or telephone; they spoke and understood English; and they identified as a person with cognitive impairment/dementia or were a caregiver for a person with cognitive impairment/dementia. Zoom or telephone interviews were selected to maximize participation such that geography would not be a barrier; this study took place while there were social distancing restrictions related to the COVID-19 pandemic, further justifying the relevance of remote interviews. There were no restrictions on geographic location. This study received Research Ethics Board (REB) approval from the University of Ottawa (REB #H-06–21–7161) to conduct research with human participants. All participants provided informed consent.

Data collection

Thirteen semi-structured interviews, most of which lasting between 45–60 minutes, were conducted with fourteen participants by two trained and experienced research assistants from August 2020 to August 2021. Two participants (5a and 5b in Table 1) who were in a romantic and informal caregiver relationship (i.e., a dementia care dyad) attended the same interview. Participants were given the option of attending their interviews via a secured virtual meeting over an Internet videoconferencing platform (Zoom) or phone call. After corresponding with the principal investigator (A.S) over email to schedule their interview, participants were provided with a unique URL that directed them to the password protected Zoom meeting, or the interviewer’s phone number if they chose to have a phone interview.

Informed consent was given at the beginning of each interview, and participants were made aware that their consent and interview would be audio recorded prior to attending the interview. Information regarding where the participants are currently residing and how the participants identify themselves in terms of their preferred pronouns, race/ethnicity, LGBTQ + identity (e.g., sexual orientation and/or gender identity), and whether they are a caregiver or person with cognitive impairment was also collected at the beginning of each semi-structured interview. After identifying whether the participant was a caregiver or person with cognitive impairment, interviewers followed a semi-structured interview guide focusing on the care needs of LGBTQ+ caregivers or LGBTQ+ people with dementia. For instance, some of the questions individuals with cognitive impairment were asked include “If you had one wish for your dementia experience as an LGBTQ+ person, what would that be?”, “Since your health issues have arisen, have you had any really positive experiences with the health care system?”, and “Do you believe that your experience with dementia differs from someone who is not a part of the LGBTQ+ community?”. For caregivers, some of the questions they answered include “If you had one wish for the delivery of dementia care among LGBTQ+ people, what would that be?”, “As a carer who is LGBTQ+, have you had any really positive experiences with the health care system?”, and “Are there some positive aspects related to caregiving? Are any of these positive aspects related to your LGBTQ+ identity?”.

Analysis

Audio data were recorded, transcribed, anonymized, and then analyzed. To analyze the data collected from the semi-structured interviews, the researchers closely followed Braun and Clarke (2006, 2021) six-phase guidelines for reflexive and inductive thematic analysis. Thematic analysis is a flexible approach that is used to identify and explicate patterns among qualitative responses in the dataset (Braun & Clarke, 2019, 2021). At the time of conducting this research, we are a team of researchers who identify as cis-gender, queer, gay, and allies of LGBTQ+ communities. The researcher team is composed of White and racialized people. All researchers have experience working with people with dementia and caregivers.

As we were interested in participants’ thoughts and attitudes regarding dementia care spaces, an experiential orientation was adopted to better understand how the participants ascribe meaningfulness to their experiences (Byrne, 2022). As per the first phase detailed by Braun and Clarke (2006), one of the researchers (J.O) relistened to the audio recordings and reread each participant’s transcript multiple times to familiarize himself with the data. After becoming more familiar with the data, initial codes were developed and recorded using NVivo software (Release 1.6.1). Example codes included autonomy, choice, grassroots change, citizen-led, microaggressions, specialized care, etc. Early themes included lack of safety and inclusivity, fear of disclosure, re-entering the closet, education/training/policies, etc. Codes were then grouped together into possible themes and subthemes based on their shared meanings.

Through analysis, we identified three themes in the data. To ensure credibility, development of the themes and coding process was supervised and reviewed by the principal investigator (A.S) who provided feedback on the proposed thematic structure. To ensure that reflexivity was established as part of the data analysis process, each researcher collaborated with one another during the theme development process. This was done to facilitate numerous interpretations and an overall better understanding of the data (Byrne, 2022). The researchers continually met to define and refine the themes and examples of quotes were extracted to write the manuscript.

Findings

Three overarching and interrelated themes were identified and developed from the data: on the margins of dementia care; sharing, reflecting, and celebrating LGBTQ+ identities; and inclusivity training and policies. Within each theme, there were several subthemes. Themes highlighted various strategies and measures to enhance the safety and inclusivity of dementia-care environments, while also addressing existing challenges in this regard.

On the margins of dementia care

In the interviews with participants, we heard lived experiences of exclusion, stigma, and discrimination related to LGBTQ+ identities within dementia care. Within this theme, subthemes of stigma and normative assumptions within healthcare and fear of disclosure and consequences were also identified. Aligning with minority stress theory, this theme detailed how participants described experiences where they would feel unsafe and excluded and rendered to the margins of dementia care.

Stigma and normative assumptions within healthcare

Participants described instances of stigma related to their sexual orientation and gender identities within dementia care services and spaces, as well as within broader healthcare. These experiences often centered around assumptions made by care providers that the participant was cis-gender and/or heterosexual. For example, a bisexual caregiver detailed an event where he was in the hospital for surgery and his gay neighbor came to pick him up. The hospital staff made assumptions about their relationship and communicated this in an unwelcoming tone:

I’m in this recovery room at the hospital, and then the nurse came to me and said, “Oh, your boyfriend’s here to take you home”… but he wasn’t my boyfriend and I thought, “Now, is she trying to be forthcoming, welcoming, or”, but I thought her tone of voice is not a good one. (age 69, caregiver)

Experiences like this highlight that caregivers’ interactions with the healthcare system are informed by their own socio-historical contexts, which can involve stigma enacted by healthcare workers. Another participant discussed how misgendering has become more commonplace in hospital settings, a form of discrimination towards transgender people that contributes to unsafe healthcare settings:

I know that, for example, you might see a lot of people get misgendered purposely… in emerg [ER] and other places within our hospital system… most people always make mistakes, but the second they kind of walk out the room, they just switch on purpose. Or just completely disregard without knowing… that you have to at least make an effort. (age 29, caregiver)

These patterns of discrimination play out in dementia care spaces. Participants described instances where care providers and care homes denied them the same rights, privileges, and involvement in care as other residents, “I think one care home [isn’t] letting someone’s partner [of] fifty years … come and be involved in her care, even though they’re in a civil partnership… those types of things… make me really, really sad” (age 26, caregiver). Another caregiver described a same-gender couple both living in long-term care where one partner had dementia and was residing in a dementia ward:

They’ve been together sixty-four years…and they all of a sudden had to be separate in two different areas and so Jason was allowed to come [see his partner Adam]… only once a week ‘cause of course we’re in a pandemic… and the two of them were… fully clothed, just lying in bed together, and one of the staff members [said], “Oh my god, you can’t”. (age 61, caregiver)

Participants described numerous instances like the one above where staff reacted in a negative and discriminatory way, often making inappropriate remarks, when LGBTQ+ identities were made visible through, for example, intimacy. While participants reported instances of stigma that they did not experience directly, the fear and stories impacted their own caregiving and care receiving experiences.

Participants described that the assumptions that were made about them in dementia care spaces, whether they were a person living with cognitive impairment or care provider, were that they were heterosexual and/or cisgender. They described being misgendered, assumed to be in a heterosexual relationship, or assumed that their romantic partners were siblings or children: “Most people would assume I’m her [participant’s wife] daughter. I look nothing like her. Absolutely nothing like her” (age 61, caregiver). Another participant mentioned a similar instance with a gay couple he is friends with, “Our friends, they’ve been at the same age and the person with dementia has been mistaken as his father because he has gray hair… there shouldn’t be an assumption. This should be a question: ‘How are you related?’” (age 26, caregiver). Furthermore, one caregiver underscored the notion of hetero- and cis-normative cultures and attitudes within dementia-care settings:

Marcus, he moved into long term care… there was a woman who arrived in long-term care and they hit it off. They became a couple. And everyone was saying, “Isn’t that nice? Isn’t that nice?”. And I thought, “Well, when my time comes and if I’m in long term care and meet some guy I would like everyone to be saying, ‘Isn’t that nice?’” (age 69, caregiver)

This participant reflected on how heterosexual relationships are valued, even within institutional care settings. He hoped that his sexuality and potential new romantic relationships would be celebrated in the same way that heterosexual relationships are celebrated.

In summary, the kinds of experiences expressed by participants made it such that participants often found it difficult to see themselves living and interacting safely within dementia care settings. Even though they had care needs, the care systems were not always designed to make them feel included. As such, LGBTQ+ people are made to feel like visitors or outsiders, ultimately contributing to their marginalization within dementia care spaces.

Fear of disclosure and consequences

Both caregivers and people living with dementia described instances where they felt that they could not disclose their LGBTQ+ identities in dementia and health care spaces for fear of negative consequences. Caregivers who also had formal roles within dementia care services and spaces expressed hesitation about revealing their LGBTQ+ identities in their workplaces out of concern for how the residents and other staff might react. Other informal caregivers described fears of disclosing their own LGBTQ+ identity or the identity of the care recipient for fear that the dementia care may be compromised. An older lesbian caregiver discussed concerns about the idea of revealing a non-heterosexual and/or cis-gender identity of a care recipient to care staff:

I was worried that [disclosing their sexual orientation] would impact the care of my mom and my dad… that would be a worry for me… that they wouldn’t be cared for with as much compassion because of, you know, their sexuality. (age 59, caregiver)

Another individual raised the fear of discussing information related to their sexual orientation/gender identity and issues with the healthcare system in dementia and health care spaces and the feeling of relief they experienced in talking through these challenges within the context of our study:

I feel it’s often tricky for me to talk about because I don’t want anything that I say to end up causing harm to my partner or to me… I think that it’s a relief for me and it makes me just think like about how else could I express these things in ways that feel safe? (age 41, caregiver)

Participants also detailed how disclosing sexual and/or gender identity in dementia-care spaces can be more complex and multifaceted for people living with dementia as the course of the illness progresses. A bisexual caregiver who was caring for her mother described being part of a LGBTQ+ support group for older adults:

Our [LGBTQ+ support group] program, we had an individual who came into the program who came out… in her mid-60 s... within three years, she had gone from fully functional, driving her own car, looking after her own house, to being in the memory lockdown ward and her dementia progressed… She retreated back into the closet and was absolutely terrified to see any of us from the [LGBTQ+ support group] group because she felt that we would probably out her. (age 65, caregiver)

Through our analysis, it was clear that participants’ LGBTQ+ identities were important to them and, concurrently, they expressed fear about having their identities revealed or known within dementia care. They worried about poor treatment and not receiving quality care because of the stigma associated with their sexual and/or gender identity.

Sharing, reflecting, and celebrating LGBTQ+ identities

Participants expressed a need to have their identities known, represented, and celebrated by others, as well as connecting with other people who identify as LGBTQ+ in dementia-care spaces. Three subthemes were developed: enhancing kinship and social networks in a new context; LGBTQ+ representation and visibility; and sharing/reflecting lived experiences and identities in care.

Enhancing kinship and social networks in a new context

As individuals with dementia and their carers progress through their dementia journey, they expressed the need for enhanced relationships and new social networks that are not only specific to their sexual orientation and/or gender identity, but to their status as caregivers or as a person with cognitive impairment, “I know I’m not the only one dealing with aging brain issues, and I want an LGBT-supportive dementia network, and they don’t have one in [this region] right now. So, I’ve been planting the seeds for that” (age 65, person with cognitive impairment). Similarly, one individual expressed a need for more support networks consisting of caregivers who identify as community members, “If there could be some kind of a network or support group for LGBTQ caregivers… not necessarily for dementia, but just for caregivers, period… I really am not aware that there are any kind of very accessible community programs” (age 57, caregiver). Furthermore, participants reported that LGBTQ+ specific social networks targeting the broader LGBTQ+ communities (i.e., non-dementia or caregiver focused) are insufficient to help with the needs of LGBTQ+ caregivers and people with cognitive impairment and are not oriented to supporting people with cognitive impairment and caregivers. For example, one non-binary caregiver voiced the difficulties that they experienced when attempting to engage with broader LGBTQ+-specific groups:

There are so many like meetups and things like that are LGBT related that are… very like physically demanding… something like the LGBT Dementia Support Group would be so much more helpful for me because then I can kind of integrate it with what’s already going on… [rather than] commit to doing all these things at once. (age 27, caregiver)

Based on the data, it is clear that participants in this study placed value on friendship and LGBTQ+-specific social networks. However, in the development of their new identities as individuals with cognitive impairment or caregivers, they found it challenging to be supported by their existing networks and similarly had difficulty finding specific social supports that would accommodate their new contexts. Participants expressed a desire not only for social networks but specifically for peer support networks, consisting of individuals who grasp the complex challenges arising from the intersection of LGBTQ+ lived experiences, dementia, and/or caregiving.

LGBTQ+ representation and visibility

Participants discussed wanting to be in dementia care spaces that have visible (and often tangible) representations of LGBTQ + cultures and that unite community members through their shared identities. One participant living with dementia, for example, conveyed a desire for dementia care spaces to play background music and films from popular LGBTQ+ artists or performing artists favored by members of LGBTQ+ communities:

I don’t want to be sitting around old folks talking about their kids and their grandchildren, because that hasn’t been my lived experience… they have something here in [name of country] called [a] men’s shed. It’s a social place… [but] where’s the men’s shed where they’re playing Judy Garland?... I haven’t found one. (age 65, person with cognitive impairment)

The participant articulates the significance of challenging heteronormative constructs associated with aging. They highlight how community-based initiatives to support healthy aging and age-friendly environments (e.g., the Men’s Shed movement), although not conventionally regarded as spaces for dementia care, reflect entrenched norms of masculinity and heteronormativity. The participant advocates for the creation of more inclusive spaces that do not presuppose familial roles based on age or assume gender-specific preferences, such as the assumption that all older individuals are parents, all individuals have been married, or that men universally dislike Judy Garland.

Likewise, an older bisexual caregiver mentioned the importance of having dedicated dementia care spaces for LGBTQ+ individuals that feature objects and symbols featured in LGBTQ+ communities and subcultures to create a more welcoming and comfortable environment for community members. She also highlighted the importance of residents being able to choose to dress in ways that celebrate their individuality and sexual and/or gender expression:

I, myself, do not need to go into [a] 2SLGBTQI+ nursing home… [but] for some people, that would provide a level of safety and comfort. And I think that it would add years to some individuals… and if they want… [these spaces can] be in bright rainbows and with fluffy boas, all that kind of stuff. But if somebody wants… to have it in leathers and… dark and goth… then that’s okay, but there are also some common areas where they can come together. (age 65, caregiver)

Further, it was also highlighted by an older gay caregiver that there is a need for care providers to be affirming of these objects and symbols. This participant detailed an account of a program volunteer visiting an LGBTQ+-identifying older adult at their place of residence, “They sent one woman over there as a well-intentioned visitor… [she] immediately saw a shelf of hardcore male pornography, and… she ran out the door very quickly… there was nothing affirming… and you gotta establish a link” (age 78, caregiver). This recollection highlights that while these objects and symbols can and should serve to celebrate LGBTQ+ identities, they can also be sources of stigma and exclusion.

Participants also discussed events that involved having their LGBTQ+ identities celebrated and affirmed by others in dementia-care spaces. For instance, one caregiver said, “I was very fortunate… [that] my mom was [in] a very affirming community. In the function room, they actually opened Pride with having an interdenominational Pride service, and so they were known in the community to be accepting” (age 65, caregiver). These sources of affirmation contribute to safety and comfort and enhance the dementia care experience for caregivers and people with cognitive impairment alike.

Sharing/reflecting lived experiences & identities in care

There was a notable desire for caregivers and LGBTQ+ people with cognitive impairment to have shared experiences and understandings such that there would be no fear of stigma from caregivers and care staff. An older caregiver discussed how shared lived experiences between care providers and their patients can be a positive aspect in the caregiving relationship, “To be able to see somebody who understands how you could be experiencing life so that you don’t have to start all over again, telling your story from the beginning each time” (age 69, caregiver). These shared understandings contributed to an often unspoken knowledge of participants’ socio-historical contexts, lived experiences, and shared identities.

One non-binary caregiver expressed how it is important for caregivers to be understanding of these individuals’ identities, regardless of whether they identify as a member of LGBTQ+ communities. They discussed that, if they were a person with cognitive impairment, they would not want their nurse to be present when disclosing information related to their sexual orientation and/or gender identity to others unless the nurse was understanding of their orientation:

If I… [was] someone with dementia and I had a nurse that didn’t understand my identity, I don’t want to be having a conversation in a support group with people when [that nurse is] around, right? So… in the LGBT region, just being understanding and not necessarily having them have to deal with the anxiety or stigma around it. I think that’s huge for them too, right? Because you can’t find that. It’s not like I could Google right now like “LGBT caretaker” and be able to find someone specifically for that. (age 27, caregiver)

Participants spoke about the importance of having care providers who were themselves LGBTQ+ or showed an understanding of participants’ lived experiences, related to their sexuality and gender identities.

Inclusivity training and policies

Participants discussed actions that can be taken at policy, institutional, and individual levels to make dementia-care spaces safer and more inclusive for LGBTQ+ caregivers and people with cognitive impairment. This theme consists of the following four subthemes: education/training; addressing & adapting policies; symbols of safety and inclusion; and advocacy and citizen-led change.

Education/training

Participants recognized that care systems and care workers faced multiple competing demands and, simultaneously, expressed concern that care workers possessed inadequate knowledge to create safe spaces and provide inclusive dementia care for LGBTQ+ people.

They felt that there were some shortcomings within care providers’ current training programs, and how training and education needs to be adapted so that caregivers can demonstrate more sensitivity to LGBTQ+ individuals living and working in care settings. One gay caregiver discussed a lack of training on sexual diversity within long term care homes, noting: “In the training of caregivers, like… at long-term care homes, they have so many problems to deal with already… now [they] get training about cultural diversity, but they don’t get training about sexual diversity” (age 57, caregiver).

Participants highlighted that cultural awareness of sexual and gender minorities is less acknowledged in training programs across long term care homes and institutional care settings due to it not being prioritized compared to other health and social concerns. As a result of a lack of training regarding LGBTQ+ issues, caregivers identified instances where LGBTQ+ residents did not feel accepted and included by non-LGBTQ+ caregivers, as exemplified by several other themes and subthemes presented in this analysis.

Further, greater knowledge about LGBTQ+ communities and experiences were also identified as potentially beneficial for non-LGBTQ+ people with cognitive impairment and residents living in dementia care settings. One caregiver discussed that allowing their grandfather with dementia, who to their knowledge does not identify as part of LGBTQ+ communities, the opportunity to meet a gay resident could help change his perspective on gay people:

If I could put him in a situation, or maybe he could connect with like an older gay man and he didn’t know that he was gay, like how valuable could that possibly be for him… if I were to say a “gay person”, [he] would be like “closeted people” [as] he remembered from his times… So, to even be able to kind of have a little way to kind of expose [gay people] to him without [him] necessarily… going to [a] Pride parade. (age 27, caregiver)

This participant’s comment suggests that increasing knowledge and reducing stigma towards LGBTQ+ people may involve facilitating opportunities for non-LGBTQ+ residents to meet members of LGBTQ+ communities. This may also facilitate an increased understanding of their experiences in a new socio-historical context.

Addressing & adapting policies

Participants spoke about how policies can be adapted to allow LGBTQ+ people to feel safe, included, and integrated within care-home and dementia care communities. For instance, one participant suggested implementing policies to use inclusive language more broadly, from resident documentation to everyday use of language in care settings:

I don’t know what the documentation said in order for them to disclose, but if it only offered two options for gender, then I would consider that not safe to disclose because they don’t have that sort of knowledge. Maybe in the emails you’re getting from them, they have their pronouns in the email signature… or just calling out language of other workers that is problematic. (age 29, caregiver)

One gay caregiver’s response reflected this notion of adapting dementia care policies to become more inclusive of LGBTQ+ individuals. He discussed having bathrooms that are non-gendered, such that one person at a time can use them, “I think I prefer… you know, one person at a time can be in there. So, it’s just a bathroom, like a disabled toilet or an accessible toilet…” (age 26, caregiver). These data suggest that participants endorsed changes to policy, which are often cis- and heteronormative, allowing people of all sexual and gender orientations feel more comfortable in these spaces.

Furthermore, participants also discussed how policies can sometimes include language that pertains to being respectful of sexual and gender diversity, and how dementia care spaces may have inclusive policies in place, but those policies are not consistently being implemented or translating into practice:

My other issue with a lot of this is there’s policy and there’s the rainbow triangle. Or there’s the rainbow sign or that, you know, there’s some rainbow symbol, but policy does not always translate to practice. It absolutely doesn’t and I’m really noticing that difference. (age 61, caregiver)

Implementing inclusive policy and practice approaches are an important means of ensuring safer and more inclusive spaces for LGBTQ+ people with cognitive impairment and caregivers.

Symbols of safety & inclusion

Despite participants noting that inclusive symbols are not always reflective of the policies in action, they nonetheless expressed a need for LGBTQ+ symbols to be present in dementia-care spaces, helping acknowledge the existence of LGBTQ+ identities and setting a tone that these identities should be respected. Some examples of responses that reflect this notion include, “I see lots of rainbow symbols everywhere, which hopefully means that, at least, when you’re greeted at the door, there’s not going to be a gasp or, you know, anything visible when I say, ‘I’m her wife’, right?” (age 61, caregiver), and:

For older adults, if the individual who is a caregiver even just [had] the flag on the name badge… it’s nice and bright and it does support a way of connection… even if somebody can’t read the name tag, lost their ability to read the name, and stuff like that. (age 65, caregiver)

One caregiver, after attending an annual dementia congress in which the case of a transgender resident was discussed, began to think more deeply about the relevance and importance of inclusive symbols:

…as their memories disappeared, they went back to when before they transitioned. So that… could be really distressing if they look in the mirror and see the person they want to be, but think it’s not okay, yet… what came up in the meeting was how small signs can make the world of difference. (age 26, caregiver)

Responses from participants highlighted that visible LGBTQ+-related signs and symbols play a notable role in the positive wellbeing of both caregivers and people with cognitive impairment and can potentially serve as consistent reminders to people with cognitive impairment that their identities are recognized during the dementia course.

Advocacy and citizen-led change

Participants expressed ways in which they themselves can engage and are currently playing a role in helping make dementia-care spaces safer and more inclusive, such as being advocates for the community. For instance, one queer and trans person said, “We [partner and them] do a lot of advocacy at our health center, which is for queer and trans people, about ableism and disability, and have really pushed a lot there” (age 41, caregiver). They also described instances where they did not receive support for LGBTQ+ affirming activities from dementia care institutions. Another caregiver detailed an account about how the care home did not support them in organizing a Pride celebration, “It actually happened because I was told [by the management], ‘Well, we’re not going to do [it]’… and I brought it to a resident council, and a bunch of eighty-year-olds decided that we were going to have a parade” (age 29, caregiver).

These data suggest that LGBTQ+ caregivers and people with cognitive impairment must advocate for their communities in order to effect change across healthcare and care home policies, whether it is regarding making care home spaces safer and more inclusive or pushing for more accessible healthcare. They have also demonstrated resilience in the face of adversity and pushback from institutions that refuse to address needs and barriers to inclusive spaces and LGBTQ+-specific support networks.

Further, one caregiver discussed the need for more involvement from LGBTQ+ people who have cognitive impairment themselves to advocate and play a role in the change of the delivery of care:

All the services feel very designed by folks who are not living with cognitive impairment and not caregivers of people who are not queer and trans… so I feel like... really empowering people [who have lived these realities]... to be able to figure out what it is that we need [is important]. (age 41, caregiver)

Participants made it clear that they would continue to advocate for themselves in the face of marginalization within dementia care. It was also clear that institutions and formal care staff should involve LGBTQ+ people with cognitive impairment and caregivers when making decisions that would lead to safer and more inclusive dementia care spaces.

Discussion

The purpose of this research was to explore the perspectives of LGBTQ+ caregivers and people with cognitive impairment with respect to dementia care, and to identify potential strategies to enhance the safety and inclusivity of these spaces. We viewed dementia care and dementia care spaces broadly; while dementia care is typically thought of as taking place exclusively within institutionalized settings, people living with dementia often reside and receive support in community (Smith et al., 2022). Our interest extended beyond personal experiences to encompass participants’ perspectives on the nature of these spaces; as insiders, they were well positioned to articulate these insights. Through semi-structured interviews and subsequent thematic analysis of the data, we identified three themes, and nine subthemes illustrating that LGBTQ+ people are often excluded from dementia care, but that reflecting and celebrating LGBTQ+ identities in care and promoting inclusive policies can lead to care that is safer for these individuals and communities.

From a minority stress perspective, it is well-documented that LGBTQ+ people experience stressors related to their sexual and/or gender identities within society more broadly as well as within healthcare (Casey et al., 2019; Rossman et al., 2017). For instance, Bayram et al. (2023) found that LGBTQ+ people with Parkinson’s were more likely to report discrimination in healthcare settings than heterosexual and cisgender men with Parkinson’s. However, less is known about LGBTQ+ individuals’ experiences within dementia care spaces. Participants in this study described experiences of feeling invisible and being left on the margins of dementia care, experiences of discrimination and stigma, and as a result, expressed concern regarding disclosing information related to their sexual orientation and/or gender identities. This is consistent with existing literature suggesting that LGBTQ+ people entering long-term care may be reluctant to disclose such information due to fears of being stigmatized based on their LGBTQ+ status and receiving lower quality of care compared to heterosexual and cisgender people (Kortes-Miller et al., 2018; Putney et al., 2018; Wilson et al., 2018). Several participants described experiences of their friends and family members who had been mistreated within care; such stories further exacerbate mistrust of care systems and spaces, preventing care needs from being addressed. These concerns among LGBTQ+ people requiring care and, specifically, older adults have been echoed elsewhere in the literature (Stinchcombe et al., 2017; Wilson et al., 2018), highlighting the need for continued action on this front.

Further, participants in the present study described tangible ways that may not only help visibilize and celebrate LGBTQ+ communities, such as playing music created by LGBTQ+-affirming artists, but they also detailed ways that promote safety and inclusivity within dementia care spaces, such as having rainbow flags and symbols prominently displayed in these spaces. These findings align with other work indicating that LGBTQ+ older adults find symbols of safety and inclusion, such as the rainbow flag, presented in care spaces to be very important to indicate safety and inclusivity (Kortes-Miller et al., 2018; McParland & Camic, 2018; Willis, 2017; Wilson et al., 2018). However, practices are not always adopted by long term care homes due to the possible negative reactions from other residents (Sussman et al., 2018).

An important finding from this research is that for participants, safety not only involved the absence of stigma and discrimination, but it involved affirmations of lived experiences and identities that fell outside of the cis- and heteronormative expectations of aging. It involved having peer-support networks with other LGBTQ+ people with shared experiences as either caregivers or people with dementia. Safety also included having carers who understood their lived experiences, and affirmed and celebrated their identities. In a personal account of a lesbian couple in the literature, Lynda tells the story of her relationship with her partner Veda (Henderson & Smith, 2021). In her story, Lynda comments on her experience providing dementia care, the importance of peer-support, experiences of social isolation and her own work around advocacy. In closing, she relates that:

When we were trying to choose Veda’s new team of support workers, I made sure that she was the one who chose… It’s important for Veda to be able to go out in the community with people who support, respect and understand her. She teaches us all. (p. 139).

Ensuring that persons with dementia are allowed agency in selecting their environments and their caregivers was important to participants in this study. By listening to and learning from people with dementia and caregivers, we can foster safety and affirm LGBTQ+ identities within dementia care spaces.

Participants also expressed less tangible strategies that can be implemented to enhance the safety and inclusivity of LGBTQ+ caregivers and people with cognitive impairment in dementia care spaces. As participants described feeling excluded from these care spaces due to hetero- and cis-normative assumptions, they discussed a need for policies to be adapted to become more inclusive to non-cisgender and non-heterosexual individuals (e.g., having gender neutral bathrooms), and for care providers to demonstrate awareness of the lives and cultures of LGBTQ+ communities, allowing them to provide LGBTQ+-affirmative care. These findings echo those from other studies conducted on how LGBTQ+ people with cognitive impairment and caregivers can be better supported. For instance, Harper (2019) suggested that targeting and eliminating cis- and heteronormative attitudes and assumptions, such as microaggressions (e.g., asking residents if they have a heterosexual partner), and using more inclusive language can also help make these spaces safer and more inclusive for LGBTQ+ people. Further, Fredriksen-Goldsen et al. (2018) outlined ten cultural competencies that can be adopted by care providers’ training programs to make these spaces more culturally relevant for LGBTQ+ caregivers and people with cognitive impairment, including understanding the cultural, historical, and social contexts that have impacted LGBTQ+ people, changing attitudes and eliminating personal biases towards community members, and accounting for intersecting and diverse identities. Through the implementation of cultural competencies in healthcare settings and, more specifically, dementia care spaces, the life course experiences of LGBTQ+ people with cognitive impairment and caregivers will be centered and the social and care needs of members of these communities will be valued.

There are multiple strengths that can be identified in the current study. One strength is that the researchers opted to conduct qualitative interviews, which allow for an in-depth description of participants’ experiences. Moreover, this study adds to a very small body of evidence focused on LGBTQ+ people with cognitive impairment and LGBTQ+ caregivers and their experiences within dementia care spaces. The age range of participants, diversity in terms of identities, and representation from caregivers and care recipients is also a strength, ensuring consideration of a variety of perspectives. The commonality observed in participants’ experiences with dementia care was evident despite the wide spectrum of participant ages, diverse geographic backgrounds, and the inclusion of both people with cognitive impairment and caregivers in the study. This underscores the shared challenges faced by individuals with minority identities, emphasizing the importance of integrating minority stress theory into both dementia research and dementia care.

Apart from these strengths, there are some limitations with the current study that are not to be overlooked. While our sample was diverse in terms of age and gender identity, there was a lack of racial diversity, such that most participants were White. We acknowledge the unique experiences and challenges faced by different racial and ethnic minority groups within the healthcare systems. Black, Indigenous, and People of Color (BIPOC) may experience discrimination in healthcare based not only on their race, but also on their gender, sexual orientation, socio-economic status, and cognitive status (Bacsu et al., 2023). Therefore, it is critical to recognize and address the different layers of stigma and discrimination faced by different marginalized groups within dementia care. We wish to acknowledge that due to the nature of dementia, people living with dementia reflect a hard-to-reach population. We are thankful for the two participants with cognitive impairment who generously shared their experiences with us, and we recognize the importance of broader inclusion from this demographic in research endeavors. These data were collected during the COVID-19 pandemic, requiring online interviews and presenting technological barriers that could have acted as a barrier to participation for some individuals. Further, as a Canadian research team, the researchers opted to open the inclusion criteria for participation to not only Canadian residents, but also to people living in other countries. However, most participants in our sample resided in Ontario, Canada’s most populous province, which suggests that the findings may not attend to differences across provinces. Given the limitations of the study and the size of the existing literature, greater research activity is needed to ensure representation from diverse identities and contexts.

This study highlights the negative impacts of dementia care spaces that are unsafe and their roles in shaping the lives of LGBTQ+ people with cognitive impairment and caregivers. Yet, it also highlights opportunities for inclusion, safety, and person-centered care that celebrates and reflects the diverse identities within LGBTQ+ communities. Implementation of policies and best practices to promote LGBTQ+ inclusion across all domains of healthcare and, specifically, dementia care is urgently needed (Desai et al., 2004; Fredriksen-Goldsen et al., 2022; Fredriksen-Goldsen & Kim, 2017).

Author biographies

Arne Stinchcombe (PhD) is an Associate Professor in the School of Psychology at the University of Ottawa with research interests in the psychosocial aspects of aging, including aging among LGBTQ+ communities. Other research interest includes a focus on community mobility and promoting healthy aging for diverse older adults. He is an Investigator with Bruyère Research Institute and the Director of the Healthy Aging Research Program (HARP) lab.

Jeremy Oueis is a first year student in the Clinical Psychology PhD program at the University of Ottawa. His undergraduate thesis focused on how gay, bisexual, and other men who have sex with men cope with non-consensual sexual experiences. His doctoral research is being supervised by Dr. Arne Stinchcombe in the Healthy Aging Research Program (HARP) Laboratory. His current research focuses on the mental health and wellbeing of older gay, bisexual, and queer men.

Kimberley Wilson (PhD) is an Associate Professor in the Department of Family Relations & Applied Nutrition at the University of Guelph. As a social gerontologist, her research is broadly focused on health and well-being for aging individuals and populations. Her current research is focused on understanding and accounting for diverse experiences of aging, with a particular focus on LGBTQ+ older adults. Her research interests include gerontology, social policy, health policy, mental health, and LGBTQ2+ aging.

David Kenneth Wright (PhD) is an Associate Professor at the University of Ottawa School of Nursing. He is the academic lead for Palliative Care and Nursing Ethics within the Centre for Research on Health and Nursing. His current research interests include palliative care approaches in diverse contexts, end of life care, grief and compassionate communities, and nursing ethics. He holds specialty certification in hospice palliative care nursing.

ORCID iDs

Arne Stinchcombe https://orcid.org/0000-0002-2101-3535

Jeremy Oueis https://orcid.org/0000-0001-9099-4069