LGBT+ people, ageing and dementia

LGBT+ people have been found to have higher rates of cognitive impairment compared to heterosexual or cisgender people due overlapping forms of social disadvantage and the intersection of various risk factors for cognitive impairment that stem from this (Witten, Reference Witten, Westwood and Price2016; Flatt et al., Reference Flatt, Johnson, Karpiak, Seidel, Larson and Brennan-Ing2018; Scharaga et al., Reference Scharaga, Chang and Kulas2021). Such risk factors include depression and mental distress (Flatt et al., Reference Flatt, Johnson, Karpiak, Seidel, Larson and Brennan-Ing2018; Hsieh et al., Reference Hsieh, Liu and Lai2021), limited social or cognitive engagement, and stigma that creates barriers for routine health-care access, both in terms of physical services (Fredriksen-Goldsen et al., Reference Fredriksen-Goldsen, Jen, Bryan and Goldsen2018) and digital health platforms (Newman et al., Reference Newman, MacGibbon, Smith, Broady, Lupton, Davis, Bear, Bath, Comensoli, Cook, Duck-Chong, Ellard, Kim, Rule and Holt2020). In addition, because particular sub-populations within the LGBT+ community (particularly gay men) have been more likely to be diagnosed with HIV in many settings (Feeney, Reference Feeney2020), they also experience a heightened risk of being diagnosed with HIV-Associated Neurological Disorder (thought to affect more than 20% of people living with HIV) and HIV-Associated Dementia (which affects about 7% of people who do not take anti-HIV medication, and who are past the early stages of the disease) (Cummins et al., Reference Cummins, Waters, Aggar, Crawford, Fethney and O'Connor2018; Dementia Australia, 2020b).

The significance of life-long experiences of personal, social and systemic discrimination among LGBT+ older people with dementia, and their care partners, should also not be underestimated (Westwood, Reference Westwood2019). Having lived through decades in which their sexuality and/or gender identities were viewed as unnatural, deviant or criminal, LGBT+ people with dementia may avoid seeking out health and social care when they need it (McPhail and Fulop, Reference McPhail and Fulop2016). When they do use health services, some LGBT+ people may choose to hide their sexuality and/or gender identity to protect themselves (Birch, Reference Birch2009; Peel and McDaid, Reference Peel and McDaid2015; Harper, Reference Harper2019). They may also experience deep-seated concern about whether they will accidentally disclose their LGBT+ identity as their cognitive ability declines (Birch, Reference Birch2009; Barrett et al., Reference Barrett, Crameri, Lambourne and Latham2015a, Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; Cousins et al., Reference Cousins, de Vries and Dening2020). In residential aged care settings, staff may presume that LGBT+ older people are cisgender or heterosexual, or may view them as no longer having a gender or sexuality identity at all, which can be anticipated and experienced as distressing (Peel et al., Reference Peel, Taylor and Harding2016).

Overall, the literature on LGBT+ experiences of dementia is scarce. Nevertheless, research on LGBT+ ageing helps to further build an understanding of some of the challenges they face in terms of health and social care. The United Kingdom-focused scoping review by Kneale et al. (Reference Kneale, Henley, Thomas and French2021), for example, found that older LGBT+ people are deeply affected by the hostility and discrimination to which they were subjected during their earlier years, which resulted in significant physical and mental health inequalities. Kneale et al. (Reference Kneale, Henley, Thomas and French2021: 493) describe social care environments as the ‘focal point for inequalities’ and characterise formal care services – broadly, those in which individuals receive care services from paid workers, such as in a residential aged care facility – as spaces that ‘severely [compromise] the identity and relationships that older [LGBT+] people [have] developed’. The scoping review by Kneale et al. (Reference Kneale, Henley, Thomas and French2021) also affirmed the importance of the social groups with which some older LGBT+ people have surrounded themselves, framing these as a protective factor against the social isolation associated with discrimination.

The findings were similar in another recent scoping review on LGBT+ older people's experiences of health care, which focused on end-of-life care and gathered literature from studies published around the world. Stinchcombe et al. (Reference Stinchcombe, Smallbone, Wilson and Kortes-Miller2017) found fear of, and actual experience of, mistreatment and discrimination to be a pressing concern for ageing LGBT+ people. Concerns around lack of equality and inclusivity were echoed in the scoping review by Lecompte et al. (Reference Lecompte, Ducharme, Beauchamp and Couture2021) on LGBT+ older adults' experiences with health and social care services, in Canada or countries with similar legislation. The authors argue that system-level change is required for equality and inclusion to become a reality in health and social care settings (Lecompte et al., Reference Lecompte, Ducharme, Beauchamp and Couture2021).

Other complexities raised in the literature include transgender people in formal care settings ‘forgetting’ that they have transitioned, or starting to associate with gender identity in a different way (Marshall et al., Reference Marshall, Cooper and Rudnick2015; Barrett et al., Reference Barrett, Crameri, Lambourne and Latham2015a, Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; Baril and Silverman, Reference Baril and Silverman2022). There are considerable differences in the way this is conceptually framed in the literature. Marshall et al. (Reference Marshall, Cooper and Rudnick2015: 112), for example, position this as a sign of ‘gender confusion’. In the case study they present, Marshall et al. (Reference Marshall, Cooper and Rudnick2015: 112) discussed an older trans person who began to display gender-fluid preferences while in a residential aged care facility, writing that this person was ‘no longer able to express a consistent gender preference due to moderate dementia’. This perspective has been strongly critiqued in Baril and Silverman (Reference Baril and Silverman2022), who argue that expressions of gender fluidity among trans people with dementia should be supported, not pathologised. Baril and Silverman (Reference Baril and Silverman2022) go on to suggest that using terms like ‘gender confusion’ are ageist and ableist. Indeed, trans individuals have long had to endure harmful assumptions that they are simply ‘confused about their identity’ (Totton and Rios, Reference Totton and Rios2021: 511) and are not who they say they are. Withall (Reference Withall2014) notes that trans people with dementia may be particularly vulnerable to cisgenderist pressure within formal care services if they are socially isolated, perhaps having lost or ended contact with those family and friends who did not affirm their gender identity. Withall (Reference Withall2014) argues that this adds to the importance of setting up advanced health-care directives. As a result of cumulative stigma and disadvantage, there is a sense of anticipatory dread among many LGBT+ people, with some having described a dementia diagnosis as their ‘worst fear’ (Price, Reference Price2012: 521).

Whilst the experience of dementia is more common in the older population, it remains unclear how the lived experience of dementia affects experiences of ageing and vice versa. This scoping review seeks to understand what the literature reveals about the lived experience of LGBT+ people, and/or their partners, after receiving a dementia diagnosis. We also consider the methods and research partnerships that have been used to investigate these lived experiences. This is because we are interested not just in what is known about this subject matter, but how it is known, in terms of the methods used.

Histories of oppression: the past is still present

The literature makes clear that LGBT+ experience of dementia cannot be understood without first understanding the lifetimes of oppression that older gender and sexuality diverse people have carried with them. For decades, members of this community were ‘treated as mentally ill’, lost or were denied jobs, were ‘forced to undergo psychiatric “cures” including electric shock treatment’ (Westwood, Reference Westwood2016: 1498). They were also rejected by their families who ‘did not value who they were’ (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b: 35), and for many, learned to hide their identities to ensure survival (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). Fear around and memories of discrimination, stigma and violence have shaped the way many older LGBT+ people interact with and view the world around them (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b).

These lifetimes of oppression have resulted in LGBT+ older people reporting more social isolation than their heterosexual, cisgender peers (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; Westwood, Reference Westwood2016). Although many LGBT+ older people will have built strong families of choice, they are at the same time more likely to be single, less likely to have adult children who can care for them (Westwood, Reference Westwood2016) and less likely to report positive relationships with families of origin (Westwood, Reference Westwood2016; McParland and Camic, Reference McParland and Camic2018). This tapestry of disadvantage creates a complex backdrop for what it is like for LGBT+ people to also experience living with dementia.

Silenced, stigmatised and forced ‘out’: dementia as a disruptor

Dementia symptoms such as memory loss (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; McParland and Camic, Reference McParland and Camic2018) and disorientation (Moore, Reference Moore2002) were discussed in the literature as potent sources of anxiety, because of the way they could jeopardise and undermine control and autonomy (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Westwood, Reference Westwood2016; McParland and Camic, Reference McParland and Camic2018). In some cases, this meant people had increasingly less control over whether and how they disclosed their sexuality and/or gender diverse identity, which created immense stress (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). This appeared to be felt by LGBT+ people with dementia and their partners alike, some of whom found themselves ‘outed’ by the person they love (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Westwood, Reference Westwood2016). As well, for older trans people with dementia, the very act of being in care and having their bodies witnessed by strangers could eliminate their ability to control which parts of their identity are shared (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b). The literature does not go into detail about how different types of dementia might interrupt and upend people's lives in distinct ways. Dykewomon (Reference Dykewomon2018) is an exception, whose partner anticipated the ‘Parkinson's-like symptoms’ of her Lewy Body dementia with a profound sense of dread.

Another source of anxiety and distress revolved around what would (or did) happen to LGBT+ people with dementia as their decision-making capabilities diminished (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b). For some, a reduced ability to make their own decisions meant that biological family members could re-enter their lives, placing power in the hands of those with potentially heteronormative or cisgenderist views (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016). Although some LGBT+ people with dementia had partners and families of choice to support them, their importance was not always understood by relatives or by staff (Moore, Reference Moore2002; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b). In Moore (Reference Moore2002: 31), one care partner recalled ‘puzzled looks, halting questions, and uncomfortable attitudes’ from hospital staff, and being repeatedly asked questions like ‘[are] there any family members we should be talking to?’ Single LGBT+ people with dementia (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; McParland and Camic, Reference McParland and Camic2018) and care partners with little or no networks of support (Moore, Reference Moore2002; Dykewomon, Reference Dykewomon2018) were highlighted as especially vulnerable. Reflecting on this point, Dykewomon (Reference Dykewomon2018: 100) wondered ‘what … people do without a close local network, without friends who have the commitment, time, and money to stay with them’.

Dementia could also interfere in the way LGBT+ people saw themselves or how they were perceived by others. Barrett et al. (Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b) and McParland and Camic (Reference McParland and Camic2018) described the overlapping stigma facing LGBT+ people with dementia and their care partners, one that relates both to cognitive impairment and to being a gender and/or sexuality minority. One participant in McParland and Camic's (Reference McParland and Camic2018: 463) study explained of her dementia diagnosis, ‘[before] I couldn't say the word because, because I was ashamed of it’. Several authors reported that participants grew increasingly isolated as their dementia, or the dementia of their partner, progressed (Moore, Reference Moore2002; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). Others pointed out that for older LGBT+ people, friends of a similar age in their family of choice may be battling their own health concerns around ageing (Westwood, Reference Westwood2016), and thus may be less available to support the person with dementia or their care partner. Troublingly, relationships that affirm LGBT+ identity appear to become less available as dementia progresses (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). In Barrett et al. (Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b: 36), one participant said her friends ‘don't know what to do, so they stay away’. These authors noted that LGBT+ communities would benefit from being educated on the importance of continuing to reach out to their peers after a dementia diagnosis (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b).

Other forms of interference wrought by dementia were related to intimate partnerships, and how the dynamics between couples may become disrupted by cognitive impairment. In addition to the stress of partners having to fight for recognition and fair treatment (Moore, Reference Moore2002; Newman and Price, Reference Newman, Price, Ward, Rivers and Sutherland2012; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b; McParland and Camic, Reference McParland and Camic2018), care partners acknowledged the difficulty of managing a rising ‘sea of needs’ and multiple roles – supporter, advocate and carer, as well as lover and life partner (Moore, Reference Moore2002; McParland and Camic, Reference McParland and Camic2018: 468). In Moore (Reference Moore2002: 35), partners described different ways that dementia had impacted their loved one's behaviour and thus their day-to-day lives: ‘sleeping, agitation, possible violent outbursts, repetitive behaviors or verbalizations, and dilemmas with personal care – dressing, eating, bathing, and incontinence’. Importantly, the difficulty wrought by these ‘re-calibrations’ (McParland and Camic, Reference McParland and Camic2018: 468) was framed as coming from dementia itself, not the relationship that LGBT+ couples shared with one another (McParland and Camic, Reference McParland and Camic2018). Some partners had to wrestle with these changing dynamics while also being wrapped in anticipatory grief, a phenomenon that is also discussed in broader dementia literature (Garand et al., Reference Garand, Lingler, Deardorf, Dekosky, Schulz, Reynolds and Amanda2012; Kobiske et al., Reference Kobiske, Bekhet, Garnier-Villarreal and Frenn2019). In McParland and Camic (Reference McParland and Camic2018), participants spoke of increasing loneliness as they watched their partners' cognitive ability decline or imagined futures without them. In her personal essay, Dykewomon (Reference Dykewomon2018: 98) reflected on her partner's wishes to end her life after being diagnosed with Lewy Body dementia (her partner ultimately died of natural causes):

Unsuitable, unsafe and discriminatory services

For older LGBT+ people with dementia and their partners, systemic discrimination was not relegated to their past (Moore, Reference Moore2002; Newman and Price, Reference Newman, Price, Ward, Rivers and Sutherland2012; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Westwood, Reference Westwood2016; Dykewomon, Reference Dykewomon2018; McParland and Camic, Reference McParland and Camic2018). When interacting with health and social care services, LGBT+ people said their care needs, histories, families and relationships were still not well understood (Moore, Reference Moore2002; Newman and Price, Reference Newman, Price, Ward, Rivers and Sutherland2012; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). A participant in Barrett et al. (Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b: 36) recalled that services seemed to invent reasons not to accept his partner for care once their sexuality was made known. Elsewhere in the same paper, several trans interviewees said they ‘stopped revealing their trans status after being refused services’. Similarly in McParland and Camic (Reference McParland and Camic2018: 462), it was suggested to one participant that her partner's dementia could be ‘linked to her lesbianism’. In Newman and Price (Reference Newman, Price, Ward, Rivers and Sutherland2012: 184), one of the care partners discussed his own experience as a carer: ‘I can honestly say… that no service provider related to me in a straightforward or empathic way.’ Even within the private homes of LGBT+ couples, the threat of discrimination could still be felt. When asked about care workers entering her home, a participant in McParland and Camic (Reference McParland and Camic2018: 469) said ‘they're not necessarily telling the truth [about not being homophobic], so how do we know that we're safe?’

Moore (Reference Moore2002: 26) warned against attributing instances such as these to individual attitudes, writing that ‘nearly all services for older adults have been created within a heterosexual framework’. In these environments, people who are gender and sexuality diverse were made to feel invisible, as their identities and their support needs went unseen (Moore, Reference Moore2002; McParland and Camic, Reference McParland and Camic2018). Westwood (Reference Westwood2016) drew in an intersectional lens to argue that lesbian and bisexual women are especially vulnerable to being made invisible, especially if they are also women of colour.

These experiences often culminated in a persistent fear of health and social care services, meaning that some chose to hide their gender and sexuality diverse identity from staff and from providers (Moore, Reference Moore2002; Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Westwood, Reference Westwood2016; McParland and Camic, Reference McParland and Camic2018). Others responded to anticipated discrimination or fears of sub-par care by delaying or resisting services Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Westwood, Reference Westwood2016; McParland and Camic, Reference McParland and Camic2018; Di Lorito et al., Reference Di Lorito, Bosco, Peel, Hinchliff, Dening, Calasanti, de Vries, Cutler, Fredriksen-Goldsen and Harwoodin press). As Westwood (Reference Westwood2016) notes, such delays could preclude LGBT+ people from receiving vital early intervention supports. In addition, the kinds of services that LGBT+ people with dementia and their partners want or need – gender and sexuality diverse support groups and facilities, for example – are not always available (Moore, Reference Moore2002; Westwood, Reference Westwood2016; McParland and Camic, Reference McParland and Camic2018) or are denied to those who seek them (Barrett et al., Reference Barrett, Crameri, Lambourne and Latham2015a, Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b).

Love and friendship: rainbow connections and resilience

Crucially, across all seven papers in this review, love and connection within the LGBT+ community and from intimate partners was framed as a significant protective factor. Partners acted as ‘sheltered harbours’ (McParland and Camic, Reference McParland and Camic2018: 466) that could affirm identity and personhood (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018) and protect against loneliness (McParland and Camic, Reference McParland and Camic2018). In several of the studies, engaging with other members of the LGBT+ community – such as through gender and sexuality diverse support groups, or spending time with LGBT+ friends – was found to provide spaces where lived experience did not have to be justified, concealed or explained (Moore, Reference Moore2002; McParland and Camic, Reference McParland and Camic2018).

Having presented the four themes that our reflexive TA generated, we now offer a summary of recommendations synthesised from the findings across the seven papers, which centre on how LGBT+ people with dementia and/or their partners could be better supported.

Recommendations in the literature

Overall, authors advocated for greater inclusivity and understanding among service providers, as well as improved access to supports that were specifically targeted at gender and sexuality diverse communities. Barrett et al. (Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016), for example, identified the importance of health and social care staff advocating for LGBT+ clients with dementia. This was described as particularly necessary for those who do not have someone in their life who supports them, for whom homophobic, biphobic or transphobic family members may pose a threat. These individuals may also be at greater risk of experiencing elder abuse (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016) by virtue of their social isolation and complex support needs. Indeed, according to the final report from the Royal Commission into Aged Care Quality and Safety (2021: 140) in Australia (where the primary authors of this paper are based), elder abuse in the aged care sector is alarmingly common and a ‘source of national shame’.

Another key recommendation was for staff training to provide greater understanding of LGBT+ histories, contemporary experiences, needs, values and cultures (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016), although such education would, we argue, also need to account for diversity within and among the LGBT+ community as well. Other suggestions included: better access to social supports for LGBT+ people with dementia and their partners, particularly their links to the LGBT+ community (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; Dykewomon, Reference Dykewomon2018); increased access to gender and sexuality diverse support groups (Moore, Reference Moore2002); and encouraging LGBT+ people with dementia to create advanced care directives (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016). As well, McParland and Camic (Reference McParland and Camic2018) and Newman and Price (Reference Newman, Price, Ward, Rivers and Sutherland2012) highlighted the need for services to actively signal safety by displaying LGBT+ symbols and other visible messages of inclusion. Many of these recommendations focused on the need to disrupt systemic heteronormativity and to build a culture of shared understanding, inclusion and support for gender and sexuality diverse people.

Furthermore, reminiscence activities were also suggested as useful ways to champion the lives and relationships of LGBT+ people with dementia (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018). During these activities, a person with dementia is guided to reflect on their previous experiences, focusing on memories of people, places and things that matter to them. This is believed to maintain connections to personhood (Cooney et al., Reference Cooney, Hunter, Murphy, Casey, Devane, Smyth, Dempsey, Murphy, Jordan and O'Shea2014), although reminiscence in a group context can also be exclusionary and in some cases heteronormative (Mackenzie, Reference Mackenzie2009). For example, among some of the participants in McParland and Camic's (Reference McParland and Camic2018) study, reminiscence was found to connect people with dementia to aspects of their identity, which in turn was important for their partners. Yet, authors were careful to point out the complexity of reminiscence. According to Barrett et al. (Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016: 105), reminiscence groups and life-story work presumes ‘that people feel safe sharing their history and that their history is a positive one’. There is no small risk in delving into the histories of LGBT+ people, potentially bringing up traumatic memories (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016), or prompting them to ‘unintentionally “out” themselves in … unsafe environments’ (McParland and Camic, Reference McParland and Camic2018: 472). These authors do not provide explicit instructions on a pathway forward. Rather, they write that creating inclusive service environments built on shared understanding is a crucial first step (Barrett et al., Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018).

Methods used in the literature

Our analysis of methods used in the literature suggests that very little research has worked collaboratively with LGBT+ people with dementia to support them to tell their own stories (see Table 5). Only three of the papers across two studies (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016; McParland and Camic, Reference McParland and Camic2018) reported data drawn from qualitative interviews with LGBT+ people with dementia. Three other papers were personal essays of lived experience – two were written by LGBT+-identifying authors who had cared for partners with dementia (Newman and Price, Reference Newman, Price, Ward, Rivers and Sutherland2012; Dykewomon, Reference Dykewomon2018), and one was written by a person who had facilitated a support group for lesbian and gay carers (Moore, Reference Moore2002). None of these personal essays was written by an LGBT+ person with dementia. As such, we can observe how scarcely the perspectives of LGBT+ people with dementia themselves are found in recent, English-language literature.

Table 5. Methods used

Only one study discussed in two of the papers (Barrett et al., Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016) described research partnerships with LGBT+ organisations. Part of the study involved collaborating with the Gender Centre NSW, Transgender Victoria and FTM Shed. Barrett et al. (Reference Barrett, Crameri, Lambourne, Latham and Whyte2015b, Reference Barrett, Crameri, Latham, Whyte, Lambourne, Westwood and Price2016) do not, however, provide a detailed account of the extent to which these partnerships informed the research process. McParland and Camic (Reference McParland and Camic2018) also mentioned engagement with LGBT+ organisations, but this appeared to be for recruitment purposes. Partnerships were marked not applicable for the three personal essays (Moore, Reference Moore2002; Newman and Price, Reference Newman, Price, Ward, Rivers and Sutherland2012; Dykewomon, Reference Dykewomon2018).

None of the studies used innovative methods for engaging LGBT+ people with dementia. By innovative, we mean methods that are engaging for people who find it difficult to communicate verbally or through writing, such as those that incorporate art-making (Smith and Phillipson, Reference Smith and Phillipson2021). The implications of this will be addressed in the Discussion section of this paper.