How can we reduce the toll of loneliness in older adults?

This episode of the NIHR podcast asks how we can reduce the toll of loneliness in older adults. The pandemic threw a spotlight on loneliness and social distancing caused heartache for so many. But it made little difference to the day to day lives of some older people. They were already isolated and lonely.

The podcast is hosted by Helen Saul, Editor in Chief of the NIHR Evidence website who will be in conversation discussing why loneliness is such a serious problem, how it relates to other conditions, and what can be done to reduce the burden. 

You’ll hear from Andrew Steptoe, Professor of Psychology and Head of Behavioural Science and Health at University College London, Sarah Page, an occupational therapist who leads the BSc course at the University of Bedfordshire and Kalpa Kharicha, Head of Research, Policy and Practice at the Campaign to End Loneliness. 

The collection of research evidence that supports this podcast is available here: https://evidence.nihr.ac.uk/collection/how-can-we-reduce-the-toll-of-loneliness-in-older-adults/

For more information about NIHR Evidence, follow us on Twitter @NIHRevidence.

The transcript for this podcast can be found here: https://docs.google.com/document/d/1Olq14bbDZ_G4eczgB1o5SSETiN8yL4KuhXWtcbLB6Sc/edit?usp=sharing

Transcript

Helen Saul : Welcome to the podcast of the National Institute for Health Research, the NIHR. This episode looks at loneliness among older people. We'll be discussing why loneliness is such serious problem, how it relates to other conditions, and what can be done to reduce the burden. My name is Helen Saul. I'm Editor in Chief of the NIHR Evidence website. I recently put together a collection of NIHR research on loneliness. And we'll be talking about some of the issues that were raised. It's a pleasure to have you with us. 

I'm joined today by Andrew Steptoe Professor of Psychology and Head of behavioral science and health at UCL. Sarah Page is an occupational therapist, and leads the BSC course at the University of Bedfordshire and Kalpa Kharicha is Head of Research Policy and Practice at the Campaign to End Loneliness. We'll start with a clip from 87 year old Gwen Frith who experienced loneliness after her husband died.

Gwen Frith: Just found that you didn't want to get out of bed and getting dressed was too much trouble. There's no point in it. I didn't really want to eat. And though, you know, you should have done you weren't reaching out to people, because you didn't think they could help you at all. 

Helen Saul: How long did it go on for, Gwen? 

Gwen Frith: It lasted from my husband dying for about 6 to 8 years. Now we’d been together for about 50 years, coming up to golden wedding. He died very suddenly, in front of me.  All I can say, what am I going to do without him? You realise you are going further and further down this road, thinking I’m never going to manage, I’m never going to come out of it. The more you went on and realised how you missed him, the depth of feeling is incredible, even now if I talk about it, I can feel it.

Helen Saul : Gwen's experience is sadly not rare. Sarah Page, in your role as an occupational therapist how familiar is Glenn's experience?

Sarah Page: Unfortunately, when story is very familiar to me as a as an occupational therapist, I see lots of people like Gwen, who experienced bereavement, they experience a loss and a sense of loneliness. And for people like Gwen there is a sense of a loss of a sense of self, their identity, their role, who they are. And that can affect a person's appetite, not wanting to eat, not wanting to eat on their own anymore. It can have an effect on a person's motivation levels. So someone like Gwen in a morning, what's the point of getting washed and dressed? She's not going anywhere, she's not doing anything. And so it can impact on her activities of daily living a lot. And to for Gwen, she had a lifelong partner, I guess. And that's going to cause him some isolation in the sense that the things that they used to do together, the places they used to go, their social networks, the different links that they had, as a marriage and a partnership together. It's unfortunate, but this is something that I've experienced quite a lot as an occupational therapist.

Helen Saul: Thank you. Kalpa. From your work at the Campaign to End Loneliness. I wonder if you could put some figures on this. How common is loneliness?

Kalpa Kharicha: Sure. So we know that people can experience loneliness at all stages of life. But in later life, there are a number of risk factors and many of the things that Sarah's mentioned that can increase people's risk of loneliness. And in the older population, about 40% of people report, some level of loneliness. But within this, there's about five to 10%, who report being lonely all or almost all the time. That sort of chronic loneliness that is particularly distressing and hard to shift, and where we focus most of our attention because that's most linked to poor health outcomes and early mortality. And those sorts of proportions have stayed constant for several decades. But given the demographic shifts that we know are taking place in this country, at least, that means the actual number of people over 50 who are lonely is is increasing and it's set to reach 2 million by 2026.

Helen Saul: Perhaps we should take a step back at this point, and define exactly what we mean by loneliness. Kalpa?

Kalpa Kharicha: So, loneliness is commonly defined as that subjective and unwelcome feeling when there is a mismatch in the quality and quantity of relationships that we have, and those that we'd like. And that's based on a cognitive discrepancy theory from Pohlmann and Peploe. It's a widely used definition. But I think it's also important to differentiate conceptually within loneliness, what we're talking about. So there's emotional loneliness, which is really, when there's a lack of a trusted confidant, or a meaningful relationship in someone's life, which really gives us a sense of belonging. And that's what Sarah again was talking about, it's commonly experienced after the loss of a lifelong partner. There's also social loneliness, which is really most closely linked to social isolation, and really refers to the wider network of relationships that we have, and whether they're as much as we'd like them to be. And then thirdly, there's existential loneliness, which draws on sort of more philosophical paradigms. And it can be an ideological lack of connection or just a feeling of not belonging, or feeling very separate from others. And that could be as a result of trauma, it can be more common at the end of life. And in practice, people experience a mixture of these things, it's not that you experience just one alone. And one other thing I'd say, actually, because we've talked so broadly about loneliness, it's also important to think about how frequently or how long lived the experiences or how severe it is, because if it's a fleeting feeling, it can actually be something that's commonly felt by people and can motivate people to reengage and think I really, I must reach out to people. But it's when it becomes more intense and more long lasting, that it becomes really problematic. And as I said, that's when it's more linked to poorer outcomes and early mortality.

Helen Saul: Thank you. I'd like to look now at the link between loneliness, and some specific other conditions. So Andrew, you're the principal investigator for the English Longitudinal Study of Aging, or ELSA. And I'd like to explore two recent studies that came out of ELSA on loneliness. So I wonder if you could start with telling us what ELSA is?

Andrew Steptoe: Yes, of course, Helen. ELSA is a research study. And it's a large population-based research study in which we recruit a representative sample of people aged 50 and above, going right through to 90s and even older than that, who are living in England in the community. And there are two particular features about ELSA that are important. First of all, it's longitudinal. So we follow people up, the same people up over time. So we can see the changes in their experience as they get older, maybe moving through retirement into old age. And we typically assess people every two years. The study started in 2002. So we've now had many, many waves of data collection. The other feature of ELSA is that it's a very multidisciplinary study. So it includes aspects to do with health and social experience such as loneliness, cognitive function, that's how well our brains work. But it also has a very strong economic component, one of the groups who helped run ELSA, from the Institute for Fiscal Studies, and they're particularly interested in people's economic circumstances as they get older. So we were able to look right across all the domains of aging, rather than just focusing on the health side or one particular aspect of people's experience.

Helen Saul: That's great. There was a recent study among the ELSA population that suggested that loneliness is linked to depression. I wonder if you could tell us just briefly about that study, and what it found? 

Andrew Steptoe: Yes of course. Loneliness and depression, as you will one might expect from what Sarah has said, and also from what Gwen experienced, they're closely linked together. And a lot of the experiences of depression are linked with having not having good social connections, and so forth. What we were interested in in this particular study was to see the extent to which loneliness at one time point predicted more depressive symptoms into the future. And so this was an analysis, which began quite a while ago, I think we took the baseline measures of loneliness in 2004. And then we followed people up over the next 12 years to see what happened as far as their depression experience was concerned. And what we found was that that original set measure of loneliness was predicting future depressive experience. And so the people who are more lonely at the beginning were more likely to become more depressed as time went by. And as they got older, and importantly, this was not because of their social class or because of their age, or because of their health status, or even because of the some of the the social activities they engaged in, it seemed to be a direct link between that experience of loneliness and future depression.

Helen Saul: Another ELSA study looked at loneliness and dementia. Could you give us a similar rundown of that one, please?

Andrew Steptoe: Yes, of course, it has a slightly similar kind of design of study, because it's, again, looking at this longitudinal component, this repeated measures over time. But what we did in this study was to take a sample of people in the English Longitudinal Study of Aging, who did not have dementia at the baseline. And we measured loneliness and along with other factors, and then we followed people up and over time, unfortunately, some people develop Alzheimer's disease and other forms of dementia. And what we found was that the lonelier people at the beginning were a greater risk over time of developing dementia. This was a relatively short study of only six years. In our terms, it's relatively short! And one of the issues with that kind of analysis is the sort of chicken and the egg because we know that dementia is something which develops quite slowly. So it's certainly possible that the people who were going to develop full blown dementia already had disturbances of their function at the beginning, which led them to be lonely. So it's quite difficult to say that the loneliness, I wouldn't say that loneliness is causing the dementia. But I think that the two things are very closely linked. And loneliness is a kind of determinant here of the way in which the brains function is declining, and it seems to be declining more rapidly in the people who are lonely compared to those who are not so lonely.

Helen Saul: How did you respond to your own results, Andrew? Was there anything in there that you weren't expecting to see? 

Andrew Steptoe: There were some things which I wasn't, I wasn't expecting to see. And one of the things in that particular study was that our measures of social isolation and I know we're going to maybe talk a little bit about social isolation later on, didn't come out as strongly linked with dementia as loneliness did. So there was something particularly about the kind of emotional experience of loneliness that was particularly relevant as far as dementia was concerned.

Helen Saul: And Kalpa, I wonder what your responses to the ELSA research?

Kalpa Kharicha: It was fantastic to see this. It's really robust evidence, isn't it? I think we've known for a long time that there's a relationship between loneliness and mental health and cognitive impairment, increasingly, there's an evidence base increasing there as well. And while loneliness and mental health are distinct and separate, there is certainly an overlap. And having one puts you at a higher risk of having the other so if you're lonely, you're more likely to have mental health problems such as depression and anxiety and the same in the other direction.

Helen Saul: In fact, I wanted to ask Andrew, about the distinction between loneliness and social isolation that came out of these studies?

Andrew Steptoe: Loneliness is a, it's an emotion, it's a feeling. And it's a feeling maybe a lack of very close, intimate relationships are perceived lack of those, or a perceived lack of broader social relationships. So it's a sensation, it's a feeling, whereas social isolation is more of a sort of objective indicator of a person's social environment. So in research terms, we measure this in a variety of different ways. Does a person live alone? Do they live with their family? Do they have contacts with friends, with relatives, with other people outside the household? Do they belong to various types of group? People who don't have those things we define as more socially isolated. So loneliness and social isolation are definitely correlated. They're related to one another. A person who's lonely is more likely to have, shall I say, impoverished social relationships. But they're definitely not the same thing. And we all know, old people who seem to have a rather small social circle and a very relatively little social activity, but seem perfectly comfortable with that because they're independent characters. They don't necessarily feel lonely. They're happy being on their own. And on the other side, we find people who seem to be very well embedded socially, but are still feeling lonely. So there are important distinctions, I think between the more objective side which is the sort of social connections, social isolation, and the more subjective feeling side, which is loneliness.

Helen Saul: So Sarah, in your work, is it important to make that distinction?

Sarah Page: Yes, yes, definitely, from what Andrew was saying, we can all feel we can all feel lonely at different times in our life, or, you know, we can have days where we feel lonely, or weeks where we feel lonely. But I suppose we have the opportunities to make those changes about those feelings of loneliness. And what can happen is with our, with the patients and clients that I see is that they don't have those same opportunities. And so the the sense of feeling lonely, perpetuates and continues really. If we don't have opportunities given to us, oroffered to us, or even having the, you know, the knowledge of the different opportunities, then how can someone escape from that loneliness and engage in in better, you know, societal activities, really,

Helen Saul: Thank you. I'd like at this point to go back to Gwen, who did eventually get over the worst of her loneliness.

Gwen Frith: I had a good talk to myself. A friend suggested I go to Age UK, and much as I didn't want to go I was dragged there. And I've got to be honest by helping other people it helped me. Iwas able to sort of help with the dinner clubs and help with raffles and things like that. No matter how incapacitated you are, there is always something you can do. It took a long while and lot of talking to myself, but eventually I started driving again, I started feeling it was right to get out of bed and get dressed and look after myself properly.

Helen Saul: Sarah, I don't know how typical you would think Gwen's approach was to getting out of loneliness?

Sarah Page: I mean, she sounds like a very strong lady. Because it sounds like she addressed the challenges of how she felt and she was motivated to do something about that. And I think her desire to, to want to make that change was was certainly a strength to her and her her loneliness. And the fact that she had something to do she had meaning and purpose, she reached out to to Age UK. And she engaged herself within a group, she then got that sense of competency. She got that sense of socialization, and she got a sense of being occupied again. So the feelings of loneliness started to ebb away more and more. So I think that she was very, very lucky, I guess that she managed to get back on track. But in my experience, not everybody is that lucky. Not everybody is that motivated. Not everybody is that resourceful, or even has the energy to be able to do tha. A lot of the time, we find people usually not wanting to go out afraid to go out, they've lost the confidence to go out. And so even going perhaps even down the road for a walk can seem enormous. So definitely, she is a very strong lady. But now everybody has the skills and abilities that Gwen has. So all credit to Gwen really for being able to do that.

Helen Saul: I think she described herself as lucky, actually several times in our conversation. But in the situation with someone who isn't feeling as able to be as motivated as Gwen, what advice would you give Sarah? Just looking for some tips here really for occupational therapists, and perhaps other healthcare professionals who are visiting older people who are lonely?

Sarah Page: I think definitely you need to give someone the value of your time. I know that time is so so precious for us all. But if we're going to go and see someone, and we're not going to give them the value of our time, a quick five minute visit, hello, I'm popping in off you go. You've not given the person the opportunity to answer the question. How are you feeling today? How will you? You know think about the question, do you feel lonely? Is that such a bad question to ask someone? It might be you're the only person to ask that question of that person. Another quick tip is we're there to offer help and support. We could be that listening ear for five minutes. That five minutes of listening to someone is worth its weight in gold because then we can do something about that person's situation. And we can act upon that. And I suppose finally going into a person's environment, it's just looking for different clues. Really, they might be telling you one thing, but actually their environment is telling you another. So it's just having a cast of your eyes over, is the person looking well? Does it look like they're having something to eat? You know, does it, do they look, how do they look in their facial expressions? Is there any indicator that a person might be feeling low of mood? And yet, they're telling you yes, yes, everything's fine. I'm fine. Thank you very much. So yeah, those would be my quick top tips, I guess.

Helen Saul: And Kalpa? Do you have anything to add to that?

Kalpa Kharicha: I would just add to that, I think it can often start with the person either recognizing this in themselves, or somebody helping them to sort of recognize that what they're feeling might be actually loneliness. And because it can be a difficult set of feelings or emotions, that it are wrapped up within that because of its subjectivity, it can make people feel a whole host of sort of distress, despair, anger, and just recognizing that those emotions might be influencing how you act, stopping you doing things, perceiving situations more sensitively or, or just what it's how it's making us sort of avoid certain situations, you know, just just recognizing what the impact of those distressing feelings can have on you, really. So it's that sort of stopping and taking stock, I think is important. I agree with what Sarah was saying, in terms of going beyond the transactional to it's really about quality of contacts that we have with people be it in a care setting, or be it in amongst what people choose, or might have chosen to do for their leisure time. So I think there's an awful lot there that can be done. And it's often about the time and the quality of a of the contacts that we're talking about. I think.

Helen Saul: So Sarah, I wonder if you could give us any more advice for family and friends of people who may be feeling lonely, doing their very best to help but not really knowing where to start?

Sarah Page: Yeah, absolutely. And so some more top tips can be, you know, to spend time some quality time with with the person that you're going to see. So it could be as a family carer, you might be there to check that the person has had their medication, it could be that you're just doing a welfare call, or whatever it might be. And sometimes that relationship becomes kind of the person and the cared for. And there is a loss of that quality relationship between the two people. So it's about sitting down and talking about the person's strengths, talking about their life talking about their life history as well. And getting them to engage, I suppose by looking back. And remembering that this is a very accomplished, accomplished person, and not forgetting tha. It's about being patient as well. If say the person isn't very talkative, don't assume that person doesn't want to talk, it could be that they're feeling quite emotional at that moment in time, it could be a communication impairment, as well as to why the person isn't communicating in the same way as they used to do. And it's about using the services that they have locally, looking at local groups, local organizations, and speaking to professionals as well speaking to, you know, the GP, the occupational therapist, and seeing what it is that can help that person at home.

Helen Saul: Thank you. Does that chime with your work, Andrew?

Andrew Steptoe: Definitely. Yes, I do agree with with Sarah, that the loneliness being a kind of subjective experience, where friends and relatives have to think quite carefully about how they're going to approach this and when people don't, you know, don't necessarily like to be called lonely by other people. So, you know, one needs to think carefully about how you manage that. And for a lot of people they they feel, or they can feel that loneliness may be, to some extent, a sort of their own fault, you know, that they're not particularly likable, or they're not, you know, other people don't find them very interesting. And so there's a sort of an issue of self worth, which can come in which could be, you know, damaged in those individuals. And so thinking about how to connect with people without, you know, them feeling that they've got some great deficits and great lack is really important, I think

Helen Saul: Kalpa? Would that be in keeping with your point of view?

Kalpa Kharicha: Yes, absolutely. I think what it makes me think about is how much we need to emphasize the value of our relationships throughout our lives. They are not a given we have to work hard at keeping them in line with maintaining ones that come and go, because of our circumstances changing. People need help to develop new ones, and keep hold of the ones you've got. And perhaps even change how you think about some of the ones that you've got. Because relationships are key to our health and well being throughout our lives. Really.

Helen Saul: Thank you very much. I think we can move on now to the future. And Andrew, I wonder what further research is needed? Where are the gaps?

Andrew Steptoe: Well, as a researcher, you can imagine, I can see all sorts of gaps and need for further research. But I'd like to emphasize, I guess, I guess, three things. First of all, we don't know very much about loneliness and social isolation in various ethnic minority, older people. And this is actually it's not just to do with loneliness it's to do with our understanding more generally, about older people and ethnic minorities, we, we really are pretty weak in research in this area in this country. So we need to do more on that. Secondly, from my point of view, I'd like to understand better the sort of mechanism, the pathways through which loneliness is related to these different health outcomes, both physical health problems, and also mental health problems and brain deterioration and cognitive decline to understand what's going on and whether we might be able to intervene in those sort of things. The third aspect, I think, is to whether we can improve our methods of trying to manage and help people who are lonely. And going back to a distinction, which I think Kalpa made earlier on between more sort of social loneliness and the kind of personal, intimate loneliness, we can see that social loneliness could well be alleviated by helping people to connect better with other people, go to groups, that sort of thing, that's not necessarily going to help with the sort of the real personal, individual sense that you don't have someone close to you. And the sad truth is that for many older people, when they've lost their partners and so on, they're probably never going to make great strides in that area. So I think it's a real challenge to think about how we can deal with loneliness across the board, not just the, the more sort of social engagement side, but also people's sense of being lonely, and how we can change that. Because we can't, you know, we can't, we're not matchmakers, we're not going to start, you know, trying to build a new relationships with people. But you know, there are important issues, I think, at that very sort of fundamental personal level, particularly for older people, which remain very challenging.

Helen Saul: To round up, I wonder if I could ask you all very quickly, what key thing you would say is needed to make a difference? Sarah, could we go with you first?

Sarah Page: For me, it's that you don't have to go through this alone. There are people that you can reach out to and get support from. It's about stopping. It's about listening. And it's about caring. And we're all going to be older one day. And so it's about investing now, which is the investment for the future. And I really do feel that care plans that could encompass meaningful and purposeful activities, for example, then that would be going part of the way than just going in to do the say, the washing and the dressing, the personal care. So I guess what I'm trying to say is that having meaningful and purposeful activities in a person's life in their day to day life, at home, makes just as much difference as someone coming in to check if they've taken the medication. And I think we need a different viewpoint on health and social care. Because this is something that's that's going to get worse. It's something that there's going to be higher numbers of loneliness, people feeling lonely. So I think it's how we view health and social care as well and what we provide that does need to change.

Helen Saul: Lovely, Andrew, what would you say?

Andrew Steptoe: Well, programs such as the Campaign to End Loneliness, and the general attention paid to loneliness is just far greater in this country than many other places. So I think we can be proud that that is happening. I suppose for me that the main priority would be to make sure that loneliness and social isolation up are seen as part of healthy aging. That healthy aging isn't just you know, keeping your fitness or you know, delaying diseases and things like that, but that these social experiences as well are really critical to to a good old age, and trying to put in place things which will allow people to sustain their social relationships at older ages is important. So many people, you know, in middle age, they allow friendships to drop away because they're preoccupied with their family or pre-occupied with their work, and then they find themselves at later ages not really having those relationships anymore. So I think we have to think of this as a as a quite a sort of long term process, you know, it's no use waiting to 75 to deal with this. You really have to be thinking about this for many decades before as well.

Helen Saul: I think so. Kalpa?

Kalpa Kharicha: Well, I think our discussion today has really emphasized why we need to bring together evidence from research and practice, and include the voices of older people in what we know about loneliness and how we best respond to it. And I think in any discussion about older people, we need to mention ageism, that exists both in terms of how people think of themselves as well as how society perceives their value, and their place. Because we know that if you expect to be lonely in later life, you're more likely to be and loneliness isn't inevitable in later life. And I think that's an important message too.

Helen Saul: Thank you very much. There's an awful lot for us to think about there. And I'd like to go back to Gwen for just one last time.

Gwen Frith: Now, I am fine. I have my moments where I think not worth it today. It doesn't altogether go away. But you learn that you've got to live with it. And I know visit a lot of people that haven't had anybody to turn to, don't get me wrong. But even if it's only going to go to the next door neighbor, you know, and stop that ache and pain. Even somebody in the shop to say hello to, I know it's been terribly hard during the lockdown and one thing and another, you can't give them you've just got to keep going. You've got to  tell yourself, there's only one life now when you've got to live it.

Helen Saul : And thank you also to Gwen. Thanks to you all. That's been a fascinating discussion. Thank you, Andrew Steptoe, Sarah Page, and Kalpa Kharicha for joining us today. This was an episode of the NIHR Podcast. I'm Helen Saul, and thank you for listening. If you have any thoughts or comments on this or any other episodes, please contact us on ced@nihr.ac.uk or via our Twitter channel @NIHRevidence. For more information about NIHR Evidence and to see our collection on loneliness. You can visit our website, which is evidence.nihr.ac.uk. Thank you.