Health

Mental and physical health among older LGBTI people is of course relevant to the need for contact with the healthcare system, social care and social services. In quantitative studies, we can acquire knowledge about major trends what sexuality and gender identity means for health and well-being among older age groups. When it comes to sexual health and experiences of living with HIV among older LGBTI people, this knowledge is also based on qualitative research and provides perspectives on their experiences as well as norms concerning gender, age and sexuality.

The roles that sexuality and age play in mental and physical well-being have been investigated in data from national public health studies in Denmark and Sweden. When it comes to assessing one’s own general health, there are no major differences among LGB people compared to heterosexual people in Sweden, where 57–59% of all people in the age groups 65–84 stated that they have good general health. A slightly higher proportion of lesbian and bisexual women (9.7%) in the age group report poor general health compared to heterosexual women (7%) (Public Health Agency of Sweden, 2014). Among trans people, 72% rated their health as good (Zeluf et al., 2016). In Denmark, it is more common among heterosexual and bisexual people (82–83%) to rate their health as good or excellent compared to lesbians and gays (74%) aged 60 years and older. This is also a lower proportion compared to younger age groups (Bindesbøl Holm Johansen et al., 2015:30).

Regarding physical health, the Danish study shows how there is a link between age and physical ill-health, where health becomes worse with age and worst at older ages, where 19% of lesbians/gays report poor physical health compared to 18% of bisexuals and 16% of heterosexuals in the same age group (Bindesbøl Holm Johansen et al., 2015). The Swedish survey shows how older lesbian and bisexual women are the group that report more often that they have sedentary leisure time compared to all groups of women. Older gay men also have a more sedentary leisure time compared to heterosexual men of the same age (2014:140).

When it comes to mental health, one can see how LGB people generally report poorer mental health compared to heterosexuals in the same age groups, but at the same time it is possible to see a correlation with age, where mental health improves with age even if these differences persist among older age groups (Bindesbøl Holm Johansen et al., 2015; Public Health Agency of Sweden, 2014; Gustafsson et al., 2017). In the Swedish study, in the age groups 65–84 there were about twice as many LGB people who reported that they suffer from severe anxiety, worry or anxiety and sleep problems compared to heterosexuals (Public Health Agency of Sweden, 2014:146 et seq.). In the Danish study, 9% of lesbians and gays in the older age groups report poor mental health compared to 4% among bisexuals and 6% among heterosexuals in the same age groups (Bindesbøl Holm Johansen et al., 2015:32). Bränström et al. (2016, 2022) analysed how differences in mental health between heterosexuals and sexual minorities differ in different age groups based on Swedish national public health data. They show that the risks for anxiety and depression are higher among lesbians, gays and bisexuals throughout the life course, but that differences based on sexuality are simultaneously reduced as people age (Bränström et al., 2016, 2022). Also Zeluf et al. (2016) notes that when it comes to the health of trans people, the proportion of people reporting good health and quality of life increases with age (Zeluf et al., 2016:46).

The Swedish study shows how the proportion of lesbian, gay and bisexual men and women who have had suicidal thoughts at some point in the last 12 months decreases with age, but on the other hand is almost twice as large compared with the proportion of  heterosexuals in the age group 65–84 (Public Health Agency of Sweden, 2014:150).  One study based on register data in Denmark and Sweden explored completed suicide and the significance of living in a same-sex or heterosexual marriage (Erlangsen et al., 2020). Their results show that there was a higher rate of suicide among same-sex couples in all age groups, and for those who were 65 years and older, the risk was 2.5 times higher among same-sex couples When looking at same-sex marriage in all age groups, those older than 65 had a higher rate of suicide compared to younger people (Erlangsen et al., 2020:79). Among trans people aged 65–94, 17% tried to take their own lives at some point and 11% seriously considered taking their own lives in the last 12 months. This had a clear correlation with age, where the risk of suicide dropped in the older age groups (Zeluf et al., 2018). 72% of trans people (of all ages) who have attempted to take their own lives responded that it was due to some part of the trans experience (Public Health Agency of Sweden, 2015).

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 can mean (Bränström et al., 2016, 2022). Gustafsson et al. (2017) also show how an unequal distribution of material resources (such as finances, position in the labour market and access to healthcare) were equivalent contributory psychosocial stress factors that explained differences in health based on sexuality. They argue that it is not just about exposure to stress factors, but also about social inequality which is related to the unfair distribution of resources such as money, social capital and power which may influence health factors (Gustafsson et al., 2017).

When it comes to sexual practices, sexual desire and sexual health, research on older LGBTI people tends to be largely based on gay men. The research focuses on different aspects ranging from norms and beliefs about sex and masculinity, consent, and changes due to prostate cancer to experiences of ageing with HIV.

In Hans Wiggo Kristiansen’s qualitative study with fieldwork and life stories from 23 gay or bisexual men aged 60–85 in Norway, he investigated men’s attitudes to sexual desire and sexual relationships. In the interviews, he found two mutually contradictory attitudes. On the one hand, some expressed resignation, that sexuality was something they left behind in line with ‘ageing with dignity’. On the other hand, other men, often with pride, pointed out that they were still sexually active, and that they met younger men (Kristiansen, 2013).

In the case of experiences of sex without consent, this was explored among people aged 60–75 in Norway through a survey study. The results show how it was about five times more common among gay and bisexual men to have experiences of sex without consent during their lives. The study also illustrates correlations between experiences of sex without consent and anxiety and depression, decreased well-being and increased feelings of loneliness (Træen et al., 2020).

A Swedish interview study investigated older gay men’s experiences of sexual changes after prostate cancer treatment in relation to their physical bodies, identity and relationships (Danemalm Jägervall et al., 2019). Physical changes as a result of the treatment were changed orgasms, inability to ejaculate and erection problems. In general, the stories are similar to other studies where heterosexual men were the focus. What differed, however, was the importance given to ejaculation in the studies, where the men talk about this as an important aspect of sexual pleasure, as a material manifestation of masculine sexual performance. Ageing was central to these stories, and understanding one’s body and illness in relation to what was expected due to ageing. How the interviewees’ sex life changed was also influenced by the relationships the men had. For those who had partners, there were stories about how practices such as physical closeness and emotional intimacy could be strengthened, while for those who sought temporary sexual contacts, impotence was an obvious problem (Danemalm Jägervall et al., 2019). In a Danish study in which 32 lesbian, gay and bisexual people aged 63–95 were interviewed, Paul, 73, tells how he felt invisible as a gay man after undergoing prostate cancer treatment. After the operation, he searched for information material that would give him answers about whether it was possible to have anal sex after the surgery, but the material he found was based only on heterosexual couples (Meggers Matthiesen, 2019:91-92).

Irene, a 70-year-old lesbian woman, says her sexual desire is just as strong now that she is older:

Here, responsibility for one’s own sexuality is repeated, which reflects a contemporary discourse in which older people are increasingly being made responsible for maintaining an active sexuality, where this is made into a personal responsibility. The body is mentioned here, as in other interviews, as something that may limit the possibilities of certain sexual practices. The quote also mentions equipment beyond the body relevant to enabling sex, such as a firmer bed and vibrators.

Among the trans people in the same study, a frustration surrounding seeking sexual partners online is frequently expressed, and both needing to explain their (trans)identity along with an impending risk of not being seen as who they are. Sexual situations involve exposing the body which also poses a risk of being rejected. In these stories, it becomes clear how gender identity, sexual desire and sexuality are intertwined, where what and who you desire is also dependent on what and who you are allowed to be and become in those situations (Siverskog, 2016:213-215).

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 (Åberg, 2018; Meggers Matthiesen, 2019; Siverskog, 2016; Vesterlund, 2013; Alasuutari, 2020). Thanks to the development of antiretroviral drugs, HIV is now a chronic disease and people age with HIV. In addition, more and more older people are diagnosed with HIV, which in turn means that more and more older people living with HIV interacted with the healthcare system and elder care (Åberg, 2018). Between 3% and 4% of men who have sex with men (MSM) are living with HIV in Sweden, compared to 0.06% in the general population. Other sexually transmitted diseases (STD) such as syphilis and gonorrhoea are also more common in the MSM group. A Swedish survey of 656 MSM who had travelled abroad investigated their experiences of HIV/STD prevention (Qvarnström & Oscarsson, 2015). Few had encountered prevention campaigns in Sweden (5%) and abroad (23%), and a majority (58%) of the participants felt that there should be more prevention initiatives. Free access to condoms and lubricants was the initiative preferred by most the men. The oldest (60–75 years) participants (together with the youngest) were those who had the least experience of prevention initiatives (Qvarnström & Oscarsson, 2015). 

A participant in a Norwegian study talks about how he lost his entire circle of friends and his partner because of his HIV diagnosis. He could not be open about his sexuality with his family because they had not accepted that he was gay. However, he received support and help through a support group organised by the Norwegian Directorate of Health (Eggebø et al., 2019:80). Another aspect is contact with doctors and primary care, where it may be necessary to be open about your sexual practices to get tested regularly. In a Danish study focusing on experiences from the healthcare system, a 70-year-old gay man talks about having anonymous sex and therefore wants to be tested for HIV annually. He talks about being well received by his doctor:

The study also includes examples of people who have seen other doctors or attended specific testing clinics in order to remain anonymous in relation to their regular doctors (Egede et al., 2019:92). In a Finnish study, there was an example where a bisexual man sought medical care for physical problems which led to a long process of investigations. He had a female partner at the time and was afraid to tell about his previous relationships with men for fear of discrimination. This meant that doctors missed testing him for HIV until late in that process. Geography also comes into play here, where people from smaller towns state that they are afraid of HIV testing because of fear of the local community’s reactions and that the results from the test would not be confidential (Törmä et al., 2014). These fears, combined with the fact that prevention campaigns rarely target older people, increase the risk that older people with HIV do not detect it until a later stage in the disease when it has had time to progress. In addition, this also increases the risk of infecting others with HIV.

Although knowledge has improved over time, the stigma surrounding the disease persists in some instances. A gay man who received notification that he had HIV a few years earlier in connection with a heart attack says:

Even if those who are open about their HIV status identify this openness as an important political strategy, most are only open about it with those closest to them and otherwise hide it. Communities that include others living with HIV can be important for sharing experiences (Backer Grønningsæter & Skog Hansen, 2018). It is common for the disease to cause serious health problems, especially for those who were diagnosed before the more advanced drugs became available and for those who have been ill but have been diagnosed at a late stage in the disease. Among the participants in a Norwegian study on ageing with HIV, it was common to have experienced loneliness, anxiety and worry about one’s own health, with several referring to themselves as ‘long-term survivors’ (Backer Grønningsæter & Skog Hansen, 2018).

When people living with HIV were asked what they think about ageing and how they saw the future, several of the participants expressed concerns (Åberg, 2018; Backer Grønningsæter & Skog Hansen, 2018). One said that he was “terrified” and because he himself had worked in elder care, he knew that medications were sometimes forgotten, something he was worried about because his HIV medication was so crucial. Another gay man who learned that he had HIV in 1991 said:

Here, both life as a LGBTI person as well as his HIV status has become something he wants to be able to live openly with. The participants also agree that the healthcare system and social care system must have knowledge about HIV (Åberg, 2018). They also have in common that they often have extensive experience of contacts with healthcare and social care. This leads into the next section, which deals more specifically with past experiences with these systems as well as thoughts concerning future contacts with healthcare and social care.