Introduction

The overall aim of the first part of this report is to contribute greater knowledge about the living conditions and quality of life of older LGBTI people, in particular in their interactions with health and social care, in the Nordic countries. The research overview has been based on the following questions: What knowledge is available about older LGBTI people’s interactions with healthcare and social care services in the Nordic countries, and what does this knowledge tell us?  Since the studies that specifically investigate older LGBTI people’s interactions with and experiences of healthcare and social care are very limited in a Nordic context, the focus was broadened to research concerning older LGBTI people’s life experiences and living conditions in a broader perspective. This was also done because factors such as previous experiences of discrimination, openness about their sexuality/gender identity, health status and relationships affect how interactions with healthcare and social care are experienced.

In this part of the report, the research and knowledge that highlights older LGBTI people’s own experiences are the focus. One criterion for inclusion of the texts in this part was that they should contain LGBTI people’s own experiences in the form of their participation in, for example, survey studies or through interviews. In the full text reading stage, we found several publications that included LGBTI people between 60 and 65 years of age, which meant that we decided to include these as well. The overview thus contains texts with empirical data from the Nordic countries that included LGBTI people aged 60 years or older, and which were presented in a way that makes it possible to deduce something about that group’s experiences. There were both quantitative and qualitative studies where the results were not reported in a way that it was possible to deduce something about the specific group, for example where people of all ages were included, but where the results were reported as general and it was therefore not possible to specifically identify older people as a group. This also occurred in qualitative studies where, for example, LGBTI people of all ages were included, but where age was not specified when quotes or empirical data were presented. These studies were excluded in light of the fact that the research shows that there are often big differences between age groups among LGBTI people (2016, 2022; Zeluf et al., 2016).

An additional purpose of the research overview is that it should result in concrete recommendations that can improve the quality of life for older LGBTI people, primarily in their interactions with public healthcare systems and social care. This first part ends with a list of recommendations that are highlighted in the studies.

Since the research overview concerns older LGBTI people, we want to briefly discuss the importance of age, generation and life course – all of which are key concepts for an understanding of the lives of older LGBTI people. Age becomes relevant in multiple ways here, where ageing and being in the latter part of life constitute a particular experience and position in one’s life course, but also because of having experience from a life lived at a certain time in history and characterised by the social and cultural discourses that have surrounded it.

Usually, we understand age as chronological age, a way of measuring life, but age is also a basis in the social order. Structurally, this can be seen in how different age groups are rewarded, prioritised and given different power in the society. In every­day encounters, age often plays a role in how people are treated and what assump­tions are made about them. Ageing occurs throughout life, where the body is con­stant­ly changing from the time we are born to the time we die. In other words, age and ageing are at once physiological and social processes (Andersson, 2008; Närvä­nen, 2009; Siverskog, 2016).  Norms for ageing and ideas about what it means to be older also change over time. In pace with demographic changes, where more and more people are living longer, we can see how the post-retirement period is expect­ed to be an active time, with a focus on self-actualisation and the consumption of experiences and products. These ideals bear traces of the focus on ‘active and successful ageing’ that has dominated gerontology, but are also characterised by capitalist interests that have established a new clientèle to which products to avoid ageing can be marketed. This period – the time after retirement for as long as you can manage yourself without help in everyday life – is sometimes referred to as the third age, while the fourth age represents a period of illness, where you become dependent on others for help (Andersson, 2009; Gilleard & Higgs, 2000). We live our lives in specific historical periods, where the historical context marks the time in which we live and where important things in our lives can mean different things depending on when in history they occur (Elder, 1994). Being a young LGBTI person today in the Nordic countries means something different compared to being a young LGBTI person in the 1930s. Society also changes over a person’s lifetime, which is particularly evident in the case of those who belong to the oldest generations of LGBTI people today. The social and legal situation, as well as the conditions for living as an LGBTI person, have changed radically during their lives in the context of living in a Nordic country. For example, different historical times have meant different conditions for living openly as LGBTI. Multiple factors play a role concerning the question of living openly, where the individual’s experiences are marked by when they came out during the course of their life – and possibly also when they came into LGBTI contexts. Different times have been marked by different norms, where discretion in relation to the outside world was long seen as self-evident for LGBTI people. It was not until the 1970s and 1980s that new ideals of openness emerged, especially in the context of (homo)sexual politics.

Decriminalisation, depathologi­sation, more places to meet, greater visibility, increased rights and a shift in the discourse around LGBTI have also created different conditions for openness over time (Lindholm & Nilsson, 2005; Siverskog & Bromseth, 2019). This is indicative of the fact that there are differences based on age within the group of older LGBTI people, where the very oldest have lived in a different context than those who have recently retired from working life. In addition to chronological age, it has a bearing on the point in life when the person came out, and whether or not this was into an LGBTI context. Those who are older today carry experiences from different times, which often affects how they relate to the healthcare system and social care and life after retirement for example, where age, generation and life course all play a role.

The research overview is based on 38 publications which include quantitative as well as qualitative studies published as scholarly journal articles, dissertations, anthology chapters, reports and books (described in more detail in terms of selection, method and focus in the overview in Appendix 2). Publications from Sweden dominate in number. Norway and Denmark are also well represented while there are only two publications from Finland, one from Åland. No publications from Iceland, The Faroe Islands or Greenland are included in the review (see the table below). However, if we look at other research areas, such as Nordic research on the health and well-being of young LGBTI people, we can see that results from some of the Nordic countries are often relevant in other Nordic countries’ contexts, as the countries have seen similar historical developments and have similar welfare systems (Nordic Council of Ministers, 2021).

Some studies are based on national public health data where several hundred older LGBTI people are sometimes included in the sample. But the vast majority of studies consist of qualitative interview studies that include a smaller number of people. The majority of the studies focus on lesbian, gay and bisexual people, but there are some studies that also include transgender people or focus solely on transgender people (see table below, which concerns the number of publications not the number of studies, and where many of the publications are often based on the same studies).

However, research concerning older people with an intersex variation has proven to be non-existent. There are also few studies internationally on older people with intersex conditions, which may have to do with the fact that intersex conditions are often brought to light at birth or in adolescence, and that research on experiences of living with intersex conditions is generally inadequate. This is despite the fact that these people often have experiences of surgical interventions and hormone therapy without consent, which then has consequences for the rest of their lives, but is rarely followed up (Berry & Monro, 2022). As Latham & Barrett (2015) point out, older people with intersex variations may have been on hormone therapy for many years, have traumatic experiences from the healthcare system, and have concerns about future care needs, especially for intimate care when the body is exposed (Latham & Barrett, 2015).