The purpose of this report was to contribute knowledge about the living conditions and quality of life of older LGBTI people, in particular in their interactions with healthcare and social care, in the Nordic countries; and to investigate what knowledge about and competence in LGBTI people’s living conditions and gender and sexuality norms is provided in health professionals’ study programmes and among healthcare and social care professionals working in the Nordic countries. In 2013, the authors of this report edited the anthology LHBTQ-åldrande: Nordiska perspektiv (LGBTI ageing: Nordic perspectives), with the aim of compiling the knowledge about older LGBTI people that existed at that time in a Nordic context. This research overview has explored what has happened in the field since then, in the past decade, which we note is a great deal. Ten years ago there were a few qualitative studies, while we now have a much larger qualitative basis, as well as a quantitative basis from some of the Nordic countries. In this final section we provide a summary of the results of the research that forms the basis of the research overview. Then we highlight the implications and recommendations made in the studies, and discuss the knowledge gaps we have identified in the overview.
Summary of the results of the report
Part 1. The living conditions of LGBTI people in the Nordic countries
Since the studies that specifically focuses on older LGBTI people’s interaction with and experiences of healthcare and social care are very limited in a Nordic context, the focus was broadened to research on the life experiences and living conditions of older LGBTI people from a broader perspective. This is also because factors such as previous experiences of discrimination, transparency, health status and relationships affect experiences of interaction with healthcare and social care. The research overview has focused on previous experiences of discrimination during a person’s life; on health, including mental, physical and sexual health, and experiences of living with HIV; interaction with healthcare and social care earlier in life and experiences of and concerns about elder care; and on relationships, social networks, chosen and non-chosen families, and LGBTI contexts. Finally, the recommendations resulting from the studies have been summarised.
The research overview has shown how a gender identity or sexuality that goes beyond the heterosexual cis norm among older people is often of great importance for mental health and living conditions and that LGBTI people who are older today have been shaped by the experiences they have had during their lives, and the historical context in which they have lived their lives. Their LGBTI identity has shaped and influenced their lives in many areas and continues to do so even in older age. When it comes to discrimination, a larger proportion of the LGBTI group than the rest of the population have been treated in ways that they find to be offensive, and subjected to violence. Experiences of having been discriminated against during their lives on the basis of gender identity or sexuality at school, in workplaces, in religious communities, in associations and in public places are presented in the studies. A recurring experience is that people who have previously been close break contact with a person when they come out. There is therefore a link between discrimination and transparency here, with transparency also involving risk-taking. LGBTI people in the older age groups report poorer mental health and higher rates of suicidal ideation than the rest of the population. The differences in health based on sexuality and gender identity are often explained by the theory of minority stress, i.e. the increased risk of psychosocial stress factors that being in a minority position may entail (Bränström et al., 2016, 2022). Gustafsson et al. (2017) also show how unequal distribution of material resources (such as finances, position in the labour market and access to healthcare) helped explain health differences as much as psychosocial stress factors. They argue that it is not just exposure to stress factors but also social inequality related to the unfair distribution of resources such as money, social capital and power that may influence health factors (Gustafsson et al., 2017). Many of those who are ageing today and who were in lesbian, gay and bisexual communities during the 1980s have strong memories from this time and suffered major losses when HIV broke out. Prevention campaigns often target younger people. Living with HIV often involves a fear of how you will be treated by elder care services.
Historically, LGBTI people have often had a poor relationship with the healthcare system as well as psychiatry, where medical theory and practice have actively created notions of social normality and deviation – what is healthy and sick (Møllerop, 2013). This has been particularly apparent through pathologisation, i.e. how psychiatry has viewed homosexuality as well as trans expressions as forms of mental illness. A number of participants have also encountered homophobia or transphobia in healthcare and social care, which may result in a person not seeking the care they need, or choosing not to be open about being LGBTI in their interactions with healthcare and social care. Cisnormative and heteronormative healthcare and social care create a tension about coming out, between invisibility and hypervisibility. Ignorance is described as being particularly high about trans people.
While the time after retirement may mean increased opportunities to choose for yourself which contexts you want to be in and which people you want to have around you, which in turn may lead to greater opportunities to be open, care needs may instead mean that these opportunities decrease and that your home also becomes someone else’s workplace. Among the participants who do not yet have care needs, there is a recurring concern about what it will be like when they get to the point of being in need of care from others. While all older people can be worried about illness, dependence, impairments in their capacities, and needing to move to an institution, there are additional worries that are specific to the LGBTI group. These worries are linked to fears of a lack of knowledge about LGBTI in elder care, and of being poorly treated due to their gender identity or sexuality by other residents or staff. It may involve fear of being discriminated against by healthcare staff, not getting help with what is important for you in relation to gender identity, being rejected as a care recipient, developing dementia and losing the ability to say what is important to you, concern about how hormone therapy, concern about not having your relationships recognised or not being able to be open, and maybe even having to ‘go back into the closet’. Those who have received elder care talk about a general silence about gender identity and sexuality in care services, which may be understood on the basis of different factors. On the one hand, this is about elder care having been subject to cuts and rationalisations for many years, which has created pressurised working conditions, which in turn leaves little room for conversation between staff and care recipients. It is also about norms, about care as a desexualised place where sex is not something that is talked about. This silence, along with heteronormativity, leaves the entire responsibility for coming out or highlighting LGBTI perspectives on the care recipients.
In terms of relationships and networks, quantitative studies suggest that older lesbian, gay and bisexual people are less likely to have contact with family and friends, and that they lack emotional support to a greater extent than the rest of the population in a Danish and a Swedish context. A much higher proportion of older trans people lack emotional support.
In the qualitative studies where relationships with original families are discussed, experiences often differ among the participants. Some have been accepted and have good relationships with their original family, while others have struggled to be acknowledged and understood in those relationships. That family, relatives and friends having distanced themselves from the person when they came out regarding their sexuality or gender identity is a common experience. Sometimes it is the individuals themselves who have finally broken off contact as a strategy to avoid encountering homophobia or transphobia. Relationships with one’s family of origin are often conditioned by heteronormative premises and interpretative frameworks for what counts as acceptable and valuable relationships. A recurring theme in the research is how chosen families are highlighted as significant and important among many older LGBTI people. This means an idea of family that goes beyond blood ties and kinship. But even though many older LGBTI people are part of what they call chosen families and have strong networks and relationships, far from everyone as these. Stories of being alone, voluntarily as well as involuntarily, are present in the studies. Given the historical context, where LGBTI identities have been criminalised, pathologised and very often not socially accepted during the lives of older LGBTI people, LGBTI contexts have often been very important for LGBTI people. These can include political groups, bar and club environments and Internet spaces – places where gender identity and/or sexuality are a common denominator for the context. They have been places and contexts in which LGBTI people have been able to find power, strength, community, friends and partners, and have been zones free of heteronormativity, and places for political struggle. These do not cease to be important for older people.