Introduction
Loneliness, often described as a modern epidemic, has received broad attention highlighting the intra- and inter-personal experiences of lacking meaningful connection (Alberti, Reference Alberti2019). The attention on loneliness has been further amplified during the COVID-19 pandemic when countless families and individuals have confronted isolation and loneliness resulting from increased social restrictions and distancing rules (Miller, Reference Miller2020). Loneliness has become an increasingly pressing social issue at the forefront of public consciousness (De Jong Gierveld et al., Reference De Jong Gierveld, van Tilburg, Dykstra, Perlman and Vangelisti2006; Rosedale, Reference Rosedale2007).
Older people are often portrayed as one of the groups most significantly impacted by the ‘loneliness epidemic’. Media outlets have largely constructed loneliness as a distressing and often inevitable part of ageing, yet media representation is likely to define loneliness inadequately and use the term interchangeably with social disconnection, isolation and emptiness (Uotila et al., Reference Uotila, Lumme-sandt and Saarenheimo2010). Loneliness has also been extensively investigated in academic literature, capturing the diverse nature of separation and emptiness faced by older people.
A variety of conceptual frameworks and measurements have been developed to examine the emotional, social, physical and spiritual experiences of loneliness, and subsequent impacts and interventions for wellbeing, physical health and public health expenditure (DiTommaso and Spinner, Reference DiTommaso and Spinner1997; Adams et al., Reference Adams, Sanders and Auth2004; De Jong Gierveld et al., Reference De Jong Gierveld, van Tilburg, Dykstra, Perlman and Vangelisti2006; Sand and Strang, Reference Sand and Strang2006; Hawkley and Cacioppo, Reference Hawkley and Cacioppo2010; Gale et al., Reference Gale, Westbury and Cooper2018). However, this rich body of scholarly understanding can lead to confusion rather than clarity, due to the lack of a unifying lens to better underline the multifaceted and often changing experiences of loneliness in old age (Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019).
On an ontological level, humans are inherently lonely and separate from the world, although, as social beings, they still struggle and seek to reduce this separation through meaningful human interactions (Frankl, Reference Frankl1964). A fundamental part of human life connects to the existential need to affirm oneself and to alleviate the anxiety arising from the separate and lonely nature of life (Tillich, Reference Tillich1952). Such existential loneliness (EL) can arise across the lifecourse (Luhmann and Hawkley, Reference Luhmann and Hawkley2016), although it may become more prevalent in old age when confronting ‘a myriad of losses’, of long-term attachments, social presence and physio-cognitive health (Bowlby, Reference Bowlby1980; Smith, Reference Smith2012).
Despite older people being at higher risk of EL, most research into EL is predominantly situated in the context of very old and fragile ageing populations, end-of-life care or other extreme conditions (Frankl, Reference Frankl1964; Ettema et al., Reference Ettema, Derksen and van Leeuwen2010; Sjöberg et al., Reference Sjöberg, Beck, Rasmussen and Edberg2018). When facing severe illness or other life-threatening challenges, people may overwhelmingly face impaired relatedness with others, finitude, and loss of meaning or purpose in life (Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019). Whilst the awareness of death and deeper fears of being alone may be triggered or amplified in such extreme circumstances, EL is also likely to exist earlier in the lifespan. A key goal in this study was to explore EL in a sample of older people who were not imminently facing death or severe illness. By situating our study in the context of retirement community living, we were able to explore how EL was experienced for a broader range of older people.
Furthermore, EL may also involve a dynamic and interactive dimension, where its confrontation can give rise to motivation to (re)affirm a deeper sense of meaning and connection (Ettema et al., Reference Ettema, Derksen and van Leeuwen2010). That is, older people may not only suffer from EL but may also find it transformational. The motivation to move into retirement communities may offer such opportunities for older people to respond to EL, to redefine themselves in response or even to defend themselves from the prospect of EL. Studies (e.g. Bekhet et al., Reference Bekhet, Zauszniewski and Nakhla2009) have suggested that the ‘push’ and ‘pull’ factors that propel people out of their current living circumstances and draw them towards retirement living may be closely connected to factors such as deep-rooted loneliness. For example, there may be a perception for some that retirement living is a panacea in relation to dawning feelings of EL (Bekhet et al., Reference Bekhet, Zauszniewski and Nakhla2009). Extending the study of EL into retirement community living not only permits exploration of EL in a broader range of older people but can also help us to understand the meaning of community-based retirement living in relation to coping with and responding to EL. Furthermore, Lawrence and Schigelone (Reference Lawrence and Schigelone2002) have raised the possibility that age-related stressors often thought of as ‘individual’ in nature can be shared, expressed and coped with ‘communally’ in the context of aged-care communities. It is also possible that retirement communities offer the possibility of communally coping with EL as an additional age-related stressor.
To date, the predominant concern with EL in the literature has been with highly fragile phases of the lifespan and not with whether older people encounter and deal with EL before reaching such extreme stages. While there are strong arguments why EL would be more intense and exaggerated during the most fragile phases of the lifespan, it is not inconceivable that the inevitable series of losses and fragilities that accumulate over the course of the lifespan would give rise to EL at an earlier age for many older people. In this study, data were drawn from a large sample of qualitative interviews with 80 older people living in retirement communities across the United Kingdom (UK) and Australia. We sought to understand experiences of EL through in-depth qualitative interviews and intimate discussions about lives lived, relationships, losses, ageing, death and retirement living. Our goals were to build upon the current body of literature in this area and more closely explore (a) what EL means to older people in retirement communities, (b) the circumstances that give rise to it, and (c) how older people experienced and responded to EL in the context of retirement communities.
Understanding EL in old age
Recent reviews of the literature on EL have concluded that the phenomenon and the concept can be vague. Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019) conducted a thorough review of both theoretical and empirical research to date and concluded that EL seems to reflect:
The immediate awareness of being fundamentally separated from other people and from the universe, and typically, because of this awareness, experiencing negative feelings, that is, moods and emotions. (Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1314)
Their review highlighted that EL can be considered as distinct from other forms of loneliness in several senses. Objective loneliness need not be connected to a feeling of loneliness. People might be objectively lonely in a spatial (e.g. they are literally and physically separated from other people in space) or social sense (e.g. they objectively lack social connections such as friends, family, romantic partners or colleagues). However, with such objective loneliness there is no judgement made in relation to whether such spatial or social circumstances are ‘good’ or ‘bad’ for the individual/s concerned.
For Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019), EL can be most closely aligned with subjective loneliness because it is about feeling lonely. Subjective loneliness is defined as the emotional experience ‘of having no or few close, intimate or meaningful social relations, including a partner or a spouse – an experience that is typically accompanied by feelings such as sadness, disappointment and/or hopelessness’ (Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1315). As forms of subjective loneliness, emotional and social loneliness have been widely researched in relation to perceived deficits in different types of human relationships (Weiss, Reference Weiss1973; DiTommaso and Spinner, Reference DiTommaso and Spinner1997).
Weiss (Reference Weiss1973) made a clear distinction between social and emotional loneliness. He described social loneliness as a form of loneliness closely connected to a lack of social integration or an absence of contacts and embeddedness. Emotional isolation, however, referred to the absence of a reliable attachment figure (Bowlby, Reference Bowlby1969) who provides a secure base, a safe haven, and reflects a deep and enduring emotional bond. Weiss (Reference Weiss1973) used ideas from attachment theory to stress the important role that the absence or loss of an attachment figure plays in relation to emotional loneliness. He stressed that ordinary friendships cannot compensate for this deep emotional loss or absence, and highlighted the significance of developing, maintaining and nurturing comparably close attachment for emotional wellbeing in older people. Furthermore, the need for transcendent connection to affirm one's being has also been addressed in the form of spiritual loneliness (Strang et al., Reference Strang, Strang and Ternestedt2002).
Arguably, EL overlaps with social and emotional loneliness in relation to feeling a sense of disconnection from others (van Tilburg, Reference van Tilburg2021), while spiritual loneliness may embrace a broader spectrum to reflect both religious and existential distresses (Strang et al., Reference Strang, Strang and Ternestedt2002). However, according to Bolmsjö et al., EL is distinct from these subjective loneliness experiences in relation to one fundamental point:
Whereas the first kind of subjective (emotional) loneliness is about lacking intimate social relations, EL (as stipulated so far) is concerned with a more basic lack, namely, a feeling of being fundamentally separated from others and the world, whether or not having a family, friends or other close acquaintances. Thus, you might have close relations and not suffer from subjective loneliness, and still experience EL. (Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1315)
Hence, EL reflects a profound sense of ‘feeling disconnected from others and the world’, a feeling that can exist even when there is a subjective sense that one has intimate connections, friends, family and colleagues. This seems to align with other ideas about EL. Sjöberg et al. (Reference Sjöberg, Beck, Rasmussen and Edberg2018: 1357) argued that EL ‘runs much deeper than loneliness’ and is ‘an unavoidable condition of humanity’. Furthermore, Yalom (Reference Yalom1980) described EL as ‘existential isolation’ that reflects the perception of an insurmountable gap between an individual and ‘the rest of the world’, even though interpersonal relationships may or may not exist. A key aim of this paper was to better understand both (a) what might lead older people to feel disconnected from others and the world in later life (EL), and (b) how this is experienced for them in a qualitative sense. The literature offers several clues about the ways in which later life might predispose us to challenges and inevitabilities that may exacerbate EL, although these understandings are often situated in the context of severe infirmity or terminal illness.
The phenomenological analysis of the EL experiences of older people in need of health care by Sjöberg et al. (Reference Sjöberg, Beck, Rasmussen and Edberg2018) suggested that the major reasons why older people felt increasingly disconnected from the world related to (a) being trapped in a frail and deteriorating body, (b) being met with indifference by the world, (c) having nobody to share life with, and (d) loss of purpose or sense of meaning. As older people begin to lose the means (e.g. meaningful bonds, a healthy body, a sense of ‘mattering’ to the world) through which they have maintained a sense of connection to the world, a ‘gradual sense of separation from the world’ is imaginable. The description by Larsson et al. of this process feels like gradually ‘turning off the lights’:
The result can be understood as if the older person is in a process of letting go of life. This process involves the body, in that the older person is increasingly limited in his or her physical abilities. The older person's long-term relationships are gradually lost, and finally the process results in the older person increasingly withdrawing into him- or herself and turning off the outside world. (Larsson et al., Reference Larsson, Rämgård and Bolmsjö2017: 147)
The results of the analysis by Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019) identified experiences of EL and circumstances in which EL arises as two distinct categories. Experiences of EL were reflected in the sub-themes (a) feelings of alienation (e.g. ‘When I am in the dining room, I don't hear anyone … the only voices I hear are the staff's and what they are talking about … They are sitting talking with each other about their own interests… and that is nothing that interests me … I have never been as lonely as in this place’; Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1315), (b) fear of abandonment (e.g. ‘Then I can also say that due to the disease I am very scared that my husband will die before me. He is my safety net now’; Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1316), (c) fear of being forgotten (e.g. ‘Being extinguished – no one will remember me and I'll be forgotten’; Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1316), and (d) fear of dying (e.g. ‘it's not death itself I am afraid of, but rather the way I will die’; Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019: 1317). These data help us to appreciate the ways in which older people can experience a sense of disconnection from the world. They also provide important clues about the sorts of circumstances that might lead to these experiences. The second category in the analysis by Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019) reflected the circumstances in which EL arises, including (a) dying, (b) a deteriorating body, (c) not being able to communicate, and (d) not being listened to or understood.
The current study sought to extend the literature on EL in older people by exploring what it means to a broad range of older people in retirement communities, many of whom have yet to experience severe illness and are not facing imminent death. Specifically, we sought to explore the circumstances that gave rise to EL, how such older people experienced it and how they sought to cope with EL in the context of retirement community living.
Methods
Sample
A total of 80 interviews were collected from eight independent-living retirement villages in the UK and Australia. Four villages per country were selected after consultation with the senior and village management teams in each country. Management teams considered which villages they felt were most representative in terms of gender, age and ethnicity. The UK sample consisted of 40 participants in the North-West, South-West, South-East and Midlands. The Australian sample was collected from 40 participants in a metropolitan area of Southern Australia. All participants were 55 years old or over with an average age of 79 (standard deviation = 7.6). The oldest participant was 93 and the youngest was 55, and the gender split was 55 women and 25 men. Despite the wide age range, all participants were relatively healthy and maintained an active and independent lifestyle. Few had chronic health conditions, and none were facing any severe or life-threating illnesses at the time of the interview. Twenty-six people were married and were living with their spouse, while the remaining 54 participants were living alone due to widow(er)hood, divorce or unmarried status. Forty-five participants had lost loved ones in recent years (often a spouse or partner). As such, more than half of the sample were facing (or had faced) loss and bereavement.
Participants were recruited through village managers who acted as gatekeepers to introduce the research project and researchers to the residents. The support of the village managers fostered a clear sense of trust between participants and the researchers that persisted through the research process. This rapport enabled the interviewers to be ‘a safe, interested stranger’ with whom the participants felt at ease to share their often painful and previously unspoken life experiences (Johnson, Reference Johnson and Silverstein2013: 182). Initially, village managers participated in an online introduction to the study with the research team and then distributed information leaflets and an invitation to participate to all residents in the selected villages. In brief, residents were informed that the study sought to talk deeply to older people about their inner emotional lives, feelings of connection and disconnection, relationships, life history and retirement living. Residents then contacted village managers if they felt that they wished to take part. Subsequently, a team of four trained researchers (including the authors) in the UK and four trained researchers in Australia contacted these residents by telephone. This sampling approach allowed for in-depth views of lived experiences of these self-selected older people. It should be noted that this approach may have restricted our study's scope to capture experiences of those who were harder to reach.
The study was approved by the Social Sciences Research Ethics Committee at the University of Bath. Ethical approval was also granted according to the internal processes in place for the management teams of villages in both the UK and Australia. Furthermore, permission was also gained from the local site managers at each of the eight participating villages.
Interviews
All interviews were conducted in the participants’ homes independently by the eight researchers between October 2019 and February 2020 in the UK and Australia. Interviews ranged from 70 to 200 minutes in length (in longer interviews, on occasions, participants and interviewers stopped for a refreshment break before recommencing their conversation) and averaged around 100 minutes. Participants were alone with the interviewer for all interviews. Where a spouse or partner was at home at the time of the interview, they were not present in the room. The project generated approximately 8,000 minutes of in-depth audio data that was audio-recorded and professionally transcribed.
Our objective with the interviews was to allow participants the time and space to talk freely about their thoughts and feelings in relation to a number of key areas: (a) their lives up to this point (including childhood, adolescence, career, family, and anything else they wished to share and discuss), (b) their closest relationships, (c) their experiences of loss, (d) feelings of loneliness and isolation, (e) their decision to move to retirement living, and (f) their experiences of living in a retirement community. Each of these areas was broad, complex, overlapped with other areas, and opened-up numerous avenues of discussion that were personal and unique to the person concerned and their lived experiences. We adopted a narrative approach to our interviews (e.g. Kvale and Brinkmann, Reference Kvale and Brinkmann2009; Morgan and Burholt, Reference Morgan and Burholt2022) which permitted participants to tell their stories freely around these core structural themes. As the interview evolved, emerging material connected to the participant's experiences of loneliness and isolation was explored in conjunction with the interviewer, in relation to the personal experiences and narrative of the person concerned. Participants could talk as freely as they wished, and interviewers were trained to listen and to interrupt minimally. Several participants commented on the value of the interview for them – it provided a welcome and (often) rare space for them to open up and feel genuinely ‘listened to’. Handwritten notes were also taken in each interview and interviewers reflected on anything they felt was relevant, important and useful to know as the interview unfolded.
Data analysis
A thematic analysis was conducted to interpret these rich data and an inductive approach was adopted. This method of analysis allowed for important messages about deeper feelings of EL to be drawn from the large amount of data without being dominated by pre-existing frameworks (Mason, Reference Mason2002). In so doing, a ‘deeper’ dimension of loneliness arose from the analyses, illustrating how these older people's loneliness, isolation, disconnection and fears inevitably ‘went deeper’ alongside ageing.
The analysis was conducted by both authors, who read the interview transcripts and notes thoroughly before conducting independent coding of each interview transcript. A combination of NVivo 12, a qualitative analysis software package, and more traditional reading and coding was used to manage and analyse the data. The two authors met frequently to discuss and compare findings and codes. If there was disagreement or divergence on codes, further reading and discussion were conducted until a consensus was met. Upon the completion of coding, final codes were converted to a hierarchy of themes and sub-themes to unpack more explicitly the complex experience of EL in participants’ lives.
Findings
Our empirical findings are presented below. Four main themes were developed from the analysis: (a) loss, (b) EL as a consequence of cultural and generational suppression of emotional expression, (c) fears and threats, and (d) trying to close the insurmountable gap (see Figure 1). The first two themes underlined both ageing-related and biographical circumstances that gave rise to EL. The third theme captured how EL was experienced as both existing and impending distresses accompanying ageing. The final theme focused on retirement living as a unique context to explore how people sought to mitigate and defend against EL. Carefully selected interview quotations are employed to substantiate the findings, reflecting socio-cultural scripts and individual meaning in participants’ words. To protect confidentiality, pseudonyms are used throughout. We briefly identify and discuss each theme below, providing illustrative examples of data from participant interviews for each.
Structure of the themes.
Note: EL: existential loneliness.
Loss
One of the most significant circumstances in which the older people in our sample felt disconnected from the world related to the loss of someone or something that had previously enabled them to feel a sense of belonging or connectedness.
Loss of spouse and closest other
The importance of enduring and meaningful emotional connections to others has been well documented in theories such as attachment theory (Bowlby, Reference Bowlby1973, Reference Bowlby1980, Reference Bowlby1982). Bowlby et al. (Reference Bowlby, Smits and Miesen1986) have argued that deep attachments to others may be one of the most important ways humans can bridge the subjective gap between themselves and the world and that such unique bonds are unlikely to be easily replaceable. More than half of our sample had lost a long-term spouse or partner. Paula (aged 72) had moved to the retirement village four months ago, four years after losing her husband to a degenerative, long-term condition. She described the sense of disconnection and meaninglessness that losing her husband created:
When he was gone, I didn't know where I fitted anymore. I didn't know who I was anymore because I wasn't … (upset) … You just existed. Went shopping when you needed food. I didn't want to see people. I didn't go anywhere. (Paula)
Douglas (aged 86) had lost his wife five years ago and tried to articulate the sense of hopelessness, despair and loss of meaning the loss created:
Interviewer: Yes, I think it's very hard losing somebody.
Douglas: It hasn't stopped being difficult.
Interviewer: No, I'm sure it hasn't. Five years is not very long ago, is it?
Douglas: No. They say it gets better. It never gets better. Don't say it gets better, it never… (upset)
Interviewer: Yes. It doesn't get easier, does it? Are there times you think about her more than at other times? At mealtimes or watching telly?
Douglas: You never stop. It's hard for people to understand a lot of the time.
Susan (aged 83) described a general sense of feeling tired of losing the people closest to her. She had lost her husband, her son, her siblings and her most recent partner, and suggested that the loneliness this created left her feeling ‘ready to die’:
You know, underneath it all I wouldn't mind leaving this world. Everyone has died and I think I'm lonely. (Susan)
Loss of physical contact and intimacy
Touch, physical intimacy and ‘contact comfort’ (e.g. Carr and Rockett, Reference Carr and Rockett2017) are core mechanisms through which a sense of attachment to others and connection to the world are created and maintained (e.g. Playfair, Reference Playfair2010). Some participants described a deficit in relation to such core relational features as a function of the loss of a spouse. Philip (aged 83) had moved to the retirement village a year ago and talked about the importance of sexual intimacy in his later life, how he had lost this possibility when his wife died and how he had sought to rediscover such intimacy:
I suppose all my life ‘sex’ has been ‘lovemaking’. I mean, we are really getting personal now but when my wife died, I missed that so much. It's much more enjoyable in old age … because, I mean, if I said it to you you'd think oh good grief, that horrible old body and all the spots and bumps and cuts and wounds and takes off a wooden leg and one thing and another (laughs), takes out the eye. Sorry (laughs). Yes, but it's not anything like that because you know you are in the same boat, for a start, the two of you, you know there's not going to be any children produced because of whatever you do, you know that you've got all the time in the world, you are not rushing against the clock, yes, you know that possibly certain things won't work properly as they used to and you know all these things and then some peculiar way … well you get round it, some peculiar way you accept it all. (Philip)
It was important to Philip to rediscover a sense of sexual and physical intimacy in his life after his wife's death:
At my wife's funeral, I said the one thing I will miss is a kiss goodnight. And blow me, afterwards, one of our friends came round, and she said, ‘Well we can send each other kisses if you like but by text every night’ and would you believe, we still are, we still do. I call her my Cornish maiden. Sometimes she comes up to visit, we pop into bed for half an hour, 45 minutes, she has a meal and goes home. Sometimes I'll say to her, ‘It's a bit chilly today, shall we go and have a cuddle?’ and she'll say, ‘Oh yes, please.’ (Philip)
Another participant, Jean (aged 78), talked about the powerful effect that a hug from a member of staff in her retirement village had for her in the aftermath of losing her husband:
I ran into one of the cleaning girls and she dropped everything she had, and she just said, ‘Come on, I've got to give you a hug.’ Well, tears started streaming down my face. And, of course, that starts it again, and then I think, ‘Move on, move on, I don't want to be reminded [of her husband's death]’, but then again, you know, I went to bed last night and I thought, ‘what lovely people I'm surrounded with’. (Jean)
There was a sense that holding on to the possibility of physical contact comfort was a significant buffer from the feelings of physical isolation many older people experienced as a consequence of losing intimate connections.
Loss of good health and physical capabilities
Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019) have argued that EL can arise when the body becomes unhealthy or dysfunctional. Such changes have the capacity to disconnect people from the world. Peter (aged 78) had moved to the retirement village two years ago, with his wife who was living with dementia. He described an intense frustration at how, since moving, his wife's dementia had brought about a sense of alienation for them:
She belonged to a book club. Well she's tried the book club here and she gets so … how best to describe it? Frustrated. Because she can't complete a sentence, frustrated because she hasn't been able to read the books because the font size is too small, she has to have a relatively large font size to be able to read, it has to be a light(ish) book because otherwise it's too heavy for her and so on. There are all these little things. My point is they don't really take it on board in the group and provide the support she needs to feel a part of it. In some ways I just feel she's a bit like a leper, really, because no one actually wants to get close to her. (Peter)
David (aged 81) had always looked after his wife (who lived with a lifelong disability) and talked about his feelings of sadness and frustration at losing the use of his arm after suffering a stroke:
Well, my wife has always had a difficult hip and right from the days of ironing her blessed skirts I've been the one who can do things. I just got on with it. And being a dermatologist, and her constantly having leg problems and hip and ankle operations and so on, noting that the skin on her shins was in a pretty bad state, knowing what to do about it, putting a good absorbent cream on them daily. I've been doing that. But … now, it's her who has to put my shirt on me. And at this present time, with my left arm sitting pretty well useless in my lap, I'm finding it so, so difficult. Very. I'm getting a bit weepy now. (David)
An ageing body and outward appearance were difficult for some older people to tolerate and were connected to a sense of feeling ‘alien’ to the rest of the world. An independent living resident, Emma (aged 77), reported her horror at being perceived as old, when a choir boy approached her on the grounds that she looked like an elderly care home resident:
It struck me. We went down to the village down here. The Australian Boys Choir were doing a concert. At the end of the concert, the boys were invited to come and talk to the residents. There were residents from all sections [care home residents and independent living residents], including the independents. I recoiled at a boy coming towards me to talk to me. He was delightful, and obviously had been well-schooled on what to say and what not to say. I wanted to say, ‘I'm not one of those [care home residents] people!’ I wanted to run away. I'm not one of them! (Emma)
Loss of coping mechanisms and possibility to stay connected
EL need not only surface when facing a myriad of losses but may also persist and even grow as a result of losing the irreplaceable means (such as close others or a healthy body) to stay connected to the world and to cope (Sjöberg et al., Reference Sjöberg, Beck, Rasmussen and Edberg2018).
Susan (aged 83) found her social world was significantly shut down by the loss of many of her friends:
Oh, I've got a few friends left. Most of them have died. Most of my friends have died. I had a couple stayed for lunch about three weeks ago. That is the first time I'd put lunch on for somebody for a number of years, because they are all dead, they've gone. I've had loads of friends, dear, they've died. The reason I do it alone is everybody is dead. And that's the truth. (Susan)
Jacqueline (aged 86) had moved to the retirement village four months ago and also talked about how the loss of her physical capacities undermined her capacity to cope with loneliness and other challenges:
Yes. In the past I've done an enormous amount of Tai Chi. I can't do it now because I've lost my balance … I'm not one that crumbles easily. I just feel that I have to get on with things. There's only me. You come into this life alone, you go out alone, so any big things you resolve alone. (Jacqueline)
EL as a consequence of cultural and generational suppression of emotional expression
The circumstances where EL emerged also pertained to some older people's inability or reluctance to articulate their experiences of alienation and meaninglessness. In our sample, feeling unable to communicate was not simply connected to physical barriers to communication but also to apparent deficits in the social and emotional tools necessary to communicate one's deeper emotional needs and feelings to the world. This may reflect cultural, generational or familial circumstances that have historically smothered people's ability to express their emotions and enhanced their sense of existential isolation.
Douglas (aged 86), struggling deeply with the death of his wife five years ago, had no other alternative to a ‘stiff upper lip’:
Interviewer: So, there are no really close others in your life?
Douglas: No close ones. No. I haven't got any close others.
Interviewer: So, who are the people you would confide in?
Douglas: I don't confide in anybody. People never confided in my family. It was different growing up then. I don't know about your family. But in my family children were seen and not heard. It's the same way now.
Polly (aged 73) articulated this phenomenon clearly:
I think … if you don't think about it, if you don't give it words, then you don't have to feel the pain. Stiff upper lip, very much part of the background until quite recently. How long is it since men cried in public? Never cry. Big boys don't cry. That is certainly what was said when I was growing up. The emotional side of life has only really been allowed to come forward, I would say, in the last 30 years. I have never seen Peter [her husband] cry. I have seen him close to it, but not really. Different generation. (Polly)
Fears and threats
Integral to the experiences of EL was a deep fear that these older people's lives, memories, narratives and identity were increasingly forgotten, unimportant and unvalued, and had been irretrievably lost in the past (Ettema et al., Reference Ettema, Derksen and van Leeuwen2010). Such fears often intensified in the face of finitude.
Realisation of death
An ontological realisation of being (and not being) need not be restricted to extreme conditions but can also be observable in healthy old age. For our participants, death was not immediately imminent although there was evidence that for some people it felt ‘closer’ than it had ever been. Some participants reported an awareness and concern with approaching death. Joyce (aged 71) conveyed her confrontation with loss as a reminder of the finite and lonely nature of her life:
Interviewer: It's a pity to lose those around you, and it does affect you. How does it affect you do you think?
Joyce: Well…
Interviewer: It makes you think?
Joyce: Yes, I think that, you know, I'm headed there too, I guess, aren't I?
Robert (aged 72) realised death was not such a distant reality after his friend's death:
I did sort of think, a couple of years back, ‘Oh, I'm now at the age that Jim died.’ But it's one of the things that you come to learn, these things happen in life, I'm afraid. There was a young lady, younger than us, again died of cancer. That was one of our bridge group. We sort of knew it was going to happen, but it happened quicker than was expected, and again, that brings home your mortality. (Robert)
All in all, our participants did not provide evidence of a profound terror in relation to death but rather a realisation of the fact that death was closing in.
Feeling forgotten
Aligned with the literature on EL, some participants talked about a fear of fading away and that their lives would be forgotten or no longer matter. Margaret (aged 77) had been living in the retirement village for three years and told us:
Margaret: And the older you get, the more you like finding people who remember your parents and your home and your youth. Which is what I most fear about getting too old.
Interviewer: Okay.
Margaret: Yes (upset) … that all the people that remember any of that are gone.
Harold (aged 91) who had never married and had lived in the retirement village for ten years, put it simply, when he stated that he did not feel anyone wanted to know about his life:
My life? Nobody wants to know about my life! (Harold)
Biographical pain
When one feels separated from the world the level of emotional distress experienced may be connected to what one feels alone with. Some participants carried painful and distressing narrative and memories from the course of their lives that increasingly haunted them as their sense of disconnection from the world increased. Some in our sample felt increasingly alone with burdens, memories and challenges that were unresolved from the course of their lives:
From an early childhood, I learned that I was a bad person … stupid, ugly … My brother was dying in hospital, connected to all these machines. My faith told me to forgive him but ultimately he scratched me in my soul as a kid. (Jane, aged 80)
I come from this secret family. We all had to present as expected. If you didn't dear, you were out, and that was the bottom line. I look back on my life and I wonder that I survived. I was thinking that just last night. I fell pregnant at 17, had a very large nervous breakdown and they disowned me. (Susan, aged 83)
I copped so many hidings from him. Then one night … my old man had a bad habit. He would get up and walk past you and smack you in the ribs. I sensed it coming, I was out of my chair in a flash, I caught him, crossed his hands over his wrists, and jammed my knuckle into his Adam's apple. That was family life. (Bob, aged 76)
Janet (aged 75) had lived in the village for three years and articulated the significance and importance of finding a space to talk about such biographical pain so that she was not alone with it:
This is what I miss a lot, a private space to talk … All my life I've suffered … and some things I do find very hard, like this illness now. With everything that's gone wrong, I would have liked to talk to somebody, no advice, I want to let off steam, I suppose. But it doesn't happen here. There isn't anything like that, there is no space you can talk. I know we're here this morning but that's because … There is no space you can talk privately. There's no space. (Janet)
Trying to close the insurmountable gap
The older people in our study showed evidence of responding to experiences of EL with attempts to alleviate it by seeking new ways of feeling connected to the world or of protecting themselves from risk of disconnection.
Moving to retirement communities
For some, the move to retirement living was a response to circumstances that had given rise to feelings of EL, such as loss of a spouse or increasing frailty and dependency. In such cases, retirement communities were viewed as a solution to intensifying feelings of EL. For others, the move to retirement communities reflected an attempt to ‘future proof’ against a dawning realisation that circumstances that give rise to existential isolation were on the horizon (although had not yet been directly experienced). For these older people, the move to retirement living was a defence against and not a response to such circumstances.
Jacqueline (aged 86) actively rearranged her living conditions by moving to a retirement community (she had moved in three months ago) as a means of gaining a sense of security and dignity as she approaches the end of life:
Well, they know the situation. That's why he wanted me to come here. There's always help on hand. And being in a house on your own and if anything happened to you, that maybe you would pass out or you couldn't get help and you would just be lying there for … That was one of the things my friend and I used to discuss. She said, ‘Say you die in bed; you could be there for a week and no one would know.’ (Jacqueline)
Many held a perception that moving to retirement living would improve aspects of life such as social connection, isolation and feelings of loneliness. Jacqueline continued:
But I've got that way that, even before I moved here, I wasn't keen on going long distances anywhere. So, we would just meet up for maybe a meal or we would go to a social club. So, it was only twice a week and the rest of the time it was pretty lonely, really … Like, a weekend, if I wasn't seeing my son, I could go from maybe Friday evening to Monday morning and hadn't spoken to anyone. [After moving here] … you only have to go downstairs and you'll meet someone in Eric's, the coffee bar. And there are quite a lot of activities going on. (Jacqueline)
Some reported that the community-based living had enabled them to restore their sense of confidence. Ann (aged 76) had discovered a rejuvenation of her confidence to ‘moan about things’ and Sally (aged 86) felt it had opened the door to ‘new joys and happiness’:
Yes. But, as I say, because I keep moaning I get things done. If you don't moan, you get nothing done. If you don't speak, nobody knows there's anything wrong … I didn't always do that and I think I've done it more since I've come here because it's given me the confidence to do it … Well I just feel I have to moan, if I don't … But that is because it has given me more confidence to do that. (Ann)
I wrote down ‘It's the best decision I've made. I felt I had an open door to new joys, happiness and achievements’, because we knew … It is a lovely retirement village. (Sally)
Others had moved to retirement living as ‘future proofing’ to defend themselves from or at least slow down things that they feared would threaten their existence as they aged. For Marie (aged 90), retirement living was the answer. She had moved to retirement living three years ago and believed it would help her to mitigate the risk of alienation and indifference as she approached the end of life:
If you have got somebody to care for you and care about you at the end of your life, that is more than money can buy. (Marie)
Robert (aged 72) expressed similar sentiments about moving to retirement living to offset the potential impact of loss in the future and his capacity to cope with the perceived impact of such loss:
That's another potential reason for moving somewhere like this, possibly sooner than you really need to, because if [my wife] did die before me, in the future, there are a lot of people I know around here. I wouldn't be particularly lonely. It wouldn't be the same, don't get me wrong. I would miss Margaret a hell of a lot, but I could exist, survive. (Robert)
Having to encounter other people who reflect existential fears
For those seeking to defend themselves from ‘not-yet-experienced’ circumstances such as loss and dependency, moving to a community where a disproportionate number of residents are directly affected by such issues proved a challenge, requiring them to ‘live alongside’ circumstances they had sought to avoid by moving.
Henry (aged 69) had moved to the village two years ago and described his increased anxiety about death after witnessing mortality within his community:
One of the things about living in a community like this is, quite a few people die because there's a lot of elderly people here, so more people living here are likely to die than in the general public. But touch wood, there's been no-one I've been close to who's died. So, that's just going to be a matter of time just because people are generally so old. (Henry)
Roy (aged 72) complained that ‘we are not carers’ for frail neighbours and actively opposed signs of increased dependency in the community:
…whereas the average age here might have been 75, it's now over 80 and we feel more now that we are in an old people's home rather than an active, independent … we are not the only people … we've had a lot of arguments with [the village operator] about this … there's two dynamics, one is the dynamics of sales, trying to sell the apartments, and the other is the dynamic of trying to maintain … a village full of active and independent people. So, we are seeing some people coming in who need assistance and there's been this kind of thought that we would provide that and we've had to tell them we are good neighbours, we are not carers. I'm not here to be a carer! (Roy)
Sharing and passing on lives
Older people also sought more symbolic means of preserving their existence within the external world. Some older people found that sharing life stories and passing on their wisdom to others was important to continue their sense of meaning and being in the ongoing flow of time.
Helen (aged 64) realised the power of talking about her early life stories and appreciating her life through the interview:
Interviewer: Yes, please (pause). Yes, it's just such an extraordinary story.
Helen: Well relating it to you makes me appreciate it more, because it's something I just took for granted and never questioned. But the depth of it suddenly, talking to you, I thought oh wow, I must tell my brother and sister that.
Emma (aged 77) eloquently explained older people's motivation to share their life stories:
Absolutely, and ‘who am I?’ This is why old people talk about their lives, their past or whatever, because they want you to know who they really are inside of the old visage. (Emma)
Some participants also demonstrated a concern with passing on wisdom to others. Having learnt the importance of focusing on strength rather than weakness in her earlier life, Helen (aged 64) was determined to remember, as well as remind other people of the strengths and values in ongoing life. She found this practice of sharing to be fulfilling and it helped her to reaffirm her meaning and inner strength in old age:
So, my mantra is focus on strengths, which makes your weaknesses irrelevant … ‘we appreciate our strengths rather than constantly looking for problems?’ So that has become part of my thing here as well, when I'm talking to people. It's very much reminding them of their life experiences and their strength and wisdom and things like that. So that is my own practice in managing my retirement. (Helen)
Discussion
Our data provided further insight into experiences of EL and the circumstances that give rise to it in a broad sample of older people living in retirement communities. As we have noted, our study focused less upon what might be considered highly fragile phases of the lifespan or on palliative care contexts. Rather, we focused on older people of a broad age range living (to various degrees) independent and active lifestyles in retirement communities.
Our findings reaffirmed what qualitative research on EL in old age has already uncovered (e.g. Larsson et al., Reference Larsson, Rämgård and Bolmsjö2017; Sjöberg et al., Reference Sjöberg, Beck, Rasmussen and Edberg2018; Bolmsjö et al., Reference Bolmsjö, Tengland and Rämgård2019). That is, older people spoke of fears related to feeling abandoned and forgotten, and there was evidence that deteriorating bodies and health, a lack of capacity or opportunity to communicate, and a sense that one ‘does not matter’ and is not ‘understood’ are core circumstances in which EL is likely to arise. As previous research has suggested, such qualitative data help us to appreciate the circumstances that give rise to a feeling of separation from the world for older people.
Beyond this, our data also helped to extend the picture of EL forwarded by previous studies. For example, it was clear that loss of attachment figures (particularly spouses and partners) played a significant role in bringing about a sense of separation between older people and the world. In Bowlby's (Reference Bowlby1969, Reference Bowlby1973, Reference Bowlby1980, Reference Bowlby1982) attachment theory, a central premise is the idea that our closest attachment bonds are a core mechanism through which we are protected from existential isolation. It follows that loss of such protective and intimate connections edges people towards EL. He argued that such unique bonds are unlikely to be easily replaceable – in fact, they may be irreplaceable in many senses. Paradoxically, losing such intimate attachments edges people closer to the existential isolation from which the relationship they have lost may well have protected them.
Furthermore, in our participants, there was also evidence that such unique attachment relationships are a vital source of physical touch and contact comfort, which may buffer older people from a sense of existential isolation. Attachment theorists (e.g. Kwong and Bartholomew, Reference Kwong and Bartholomew2011; Carr and Rockett, Reference Carr and Rockett2017) have suggested that contact comfort (skin-to-skin physical contact) is an important feature of human connection and researchers have also suggested (e.g. Playfair, Reference Playfair2010) that physical touch can be an important mechanism through which EL is mitigated and through which we can literally feel connected to the world.
Feeling unable to communicate has been identified as a cause of EL. Bolmsjö et al. (Reference Bolmsjö, Tengland and Rämgård2019: 1318) quoted a patient with aphasia as suggesting that ‘the soul is incarcerated in an insufferable prison’. Our study hinted that communication deficits need not be physical or neurological in origin and may also connect to people's emotional language and capacity to articulate their experiences of vulnerability and suffering. Such emotional language is also relevant to attachment theory in the sense that it is typically a function of early emotional narrative and (lack of) permission to express and articulate emotional experiences.
The literature (e.g. Capstick and Clegg, Reference Capstick and Clegg2013) has identified that many older people born in the first half of the 20th century were indoctrinated into the concept of what has been termed a ‘stiff upper lip’. That is, through most of their lives, including wartime, peacetime employment, conscription to military service and family life, many were required to maintain high levels of cognitive control and low levels of expressed emotion. This may reflect cultural, familial and emotional circumstances that give rise to a sense of EL through hindered emotional communication in later life. Capstick and Clegg's (Reference Capstick and Clegg2013) exploration of older people's ‘stiff upper lip’ focused exclusively on older men – and they noted that the phenomenon may be more prominent in males of a certain generation. That said, in our study we also spoke to women of the same generation who claimed that they too had grown up in cultural and familial circumstances that had fostered similar qualities. The gendered nature of this phenomenon requires further investigation.
Gerontologists have coined the term ‘biographical pain’ (e.g. Johnson, Reference Johnson and Silverstein2013, Reference Johnson, Johnson and Walker2016) to describe psychological and spiritual suffering in the old and frail that involves profoundly painful recollection and reliving of experienced wrongs, self-promises and regretted actions dealt with in the face of finitude:
Living to be old is still considered to be a great benefit. But dying slowly and painfully, with too much time to reflect and with little or no prospect of redressing harms, deficits, deceits, and emotional pain, has few redeeming features. (Johnson, Reference Johnson, Johnson and Walker2016: 199)
Our sample showed evidence of how challenging it can be to ‘sit with’ painful and difficult memories in later life. Exploring how the concept of biographical pain connects to EL in later life is an important avenue of future research.
Retirement communities provided an intriguing and unique setting for our exploration of EL, especially older people's dynamic responses to it. Recent literature (e.g. Schwitter, Reference Schwitter2022) has suggested that mixed dependency levels in retirement communities, while generally leading to the development of a culture of neighbourliness and helping behaviour, can give rise to tensions and is not always appreciated by all residents. Our data raised suggestions that some residents felt that their sense of existential anxiety was activated by the fact that they often found themselves living alongside others who ‘embodied’ some of the features of ageing (e.g. frailty, degenerative health conditions and loss) they had sought to ‘avoid’ by moving to retirement living in the first place. This raises intriguing questions in relation to the narrative that residents are ‘sold’ and ‘buy into’ by providers and developers of retirement communities.
Strengths and limitations
Drawing upon a large set of 80 interviews, our study provided evidence that EL may be tied to older people's ongoing lives. The data are further enhanced by the broad age range of the sample, which permitted exploration of EL in relation to ageing as a gradual process in which it could emerge alongside the accumulation of changes and challenges in people's lives. This research also benefited from a biographical interview approach, through which EL was found to be rooted to hidden and often painful experiences that are intimately connected to earlier life narratives. Based on these in-depth interviews, our analysis was able to capture a diverse and dynamic picture of subtle, suppressed and often unseen experiences of EL in older people's everyday lives.
The context of retirement living in this study may restrict the transferability of findings to other contexts, such as home-dwelling older people or those living with family. Furthermore, our findings are limited by a lack of sample diversity. For example, only three non-white participants were recruited, making it difficult to explore how race and ethnicity may shape older people's sense of being and meaning in relation to EL. Because of this racially homogenous sample, and despite this study being conducted across the UK and Australia, no significant cultural differences were identified. Future research is needed to explore whether and how the age-related challenges to EL identified and experienced by our sample are also experienced in minority groups of older people.
Implications
By situating EL as a gradual and potentially inevitable part of the ageing process, the findings of this study reinforce the pervasive nature of EL in both a conceptual and ‘lived’ sense. Despite many older people's reported experiences of existential isolation, they frequently lacked a language through which to recognise and make sense of their EL. This lack of literacy in relation to expression of EL points to the inadequacy of social structures to enable older people (and others, including family, health and social care workers, and policy makers), to recognise and subsequently respond to EL in old age. Therefore, it is pivotal to develop a more EL-literate culture in older people's immediate networks and wider society, in which the experiences of EL can be better understood and supported. This development will require improving awareness of EL among older people. Meanwhile, furthering education for families and care professionals will allow for a more sympathetic and understanding atmosphere for older people to raise their existential concerns and access further support. To develop more context-specific literacy for EL, attention should be devoted to the circumstances that may give rise to EL, such as bereavement or the lack of recognition for older people's life histories. Community (both local communities and retirement villages) can provide a particularly useful platform for older people to access emotional language and mutual understanding, helping to better make sense of and alleviate their varied EL experiences without needing formalised interventions. As illustrated above, even simply having a space to talk about their lives is likely to be of great value.
Acknowledgements
We would like to acknowledge the following people and organisations for their kind support of this project: (a) Professor Malcolm Johnson, (b) Guild Living, (c) Dr Kate Barnett, (d) the research teams in the UK and Australia, (e) Life Care, Australia, (f) Inspired Villages Group, UK, and (g) the participants who kindly shared their thoughts, feelings and experiences with us.
Author contributions
Both authors made a substantial contribution to: (a) the conception and design, and analysis and interpretation of data; (b) the drafting of all sections of the article, and (c) approval of the final version to be submitted for publication.
Financial support
This work was supported by a research grant from Guild Living Ltd (grant number RE-ED1100). The authors confirm that the funder played no role in the design, execution, analysis and interpretation of data, or writing of the study.
Conflict of interest
The authors declare no conflicts of interest.
Ethical standards
This study was approved by the Social Sciences Research Ethics Committee (SSREC) at the University of Bath (SSREC reference S19-052).
