Meredith Greene : Loneliness in Older Adults Living with HIV

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Meredith Greene, Associate Director, Geriatric HIV Consultation Clinic, Zuckerberg San Francisco General Hospital, San Francisco

Meredith Greene : Loneliness in Older Adults Living with HIV

More than half of people living with HIV in Canada and the US are now over 50 years old. As they age, more are reporting experiencing loneliness. What impact does loneliness have on their health and quality of life? Is loneliness driving other health problems?

Descriptive Transcript

Thank you all. I’m excited to be here this morning in Toronto. So much so that I agreed to leave California and come here in December at 8am and be with all of you today. But really it was an honor to be invited this morning. So just very briefly my disclosures are mostly around funding, which is primarily from the federal government and foundation sources. I will receive funding beginning in January though from Gilead, for our clinic at San Francisco General, and I’ve received honoraria from the American Academy of HIV medicine, and I work at the University of California San Francisco.

So for around the next 20 minutes or so we’re gonna start by talking about “What is Loneliness” because there’s a lot of different terminology. Understanding how it relates to but is different from social isolation. What we know about the effects of loneliness in the general population, but really then focusing on what we know about loneliness in older HIV-positive adults, and then finally talk about what are practical things that you can do to screen for and assess for loneliness. And what are some of the interventions or solutions to address it, and I will say with one one caveat, before we move on to just loneliness. While we’re talking specifically about older adults, I am a geriatrician, so that is my focus, but it is important to acknowledge that loneliness can occur at any age, and in particular, population studies show that there may be peaks both in adolescence as well as older ages.

But with that… What is loneliness? and why are we talking about it? So you may have seen headlines like this in January of this year, the United Kingdom appointed a minister of loneliness, Tracey Crouch, which received a lot of attention. These are headlines from The New York Times, The Washington Post, CBC radio, all talking about loneliness. So what is loneliness? So you can really think of it as a subjective feeling, and it’s the subjective feeling of being alone and how I’d really think about it is it’s the distress someone might feel between their actual and their desired relationships. It’s important to note that it’s not the same as living alone, so it’s a distinct concept. So you can live alone and not feel lonely, but you can also live around a lot of other people and feel extremely lonely. So it’s not enough just to ask if someone lives alone, and that this is separate but related to social isolation, which is really usually thought of as the objective number of relationships. So more a quantifiable term. And both of these are important for health.

So just the prevalence in the general population of older adults. In the U.S. it’s been estimated to be around 40 percent of the population, reports show over a million adults in the United Kingdom are reporting loneliness. And in one place I found, I think in the CBC report, maybe 25 to 30 percent of Canadians of all ages, not just older, may be lonely. I will note though that there was a study that came out in 2015 of older adults in Canada that showed that the loneliness scores, when you compared to other countries, were lower in Canada than in other parts of the world. So some things to think about. What are things associated with loneliness? So it’s been associated with living in a rural area compared to an urban area. Alcohol and tobacco use. Living alone, so while separate living alone could be a risk factor for feeling lonely. As well as lower physical activity.

And by knowing some of the risk factors and you might be able to think about who can you target or try to assess for loneliness. This is again in the general population there have been studies that show that women may be lonelier than men. Definitely older LGBTQ adults. People who are widowed or divorced who had in general have low contact with others. Lower socioeconomic status is extremely associated with loneliness. Limited social networks. Worsening physical health or decline in physical function. As well as mobility limitations, and how often you actually leave the house. Actually in one of my roles at UCSF, I make house calls to older adults who cannot get out of their home and it can be incredibly lonely. And also thinking about sensory impairments, so hearing and visual loss if they’re severe, can also be isolating and make someone feel lonely. And what do we know about the impact of loneliness?

So why were there all these headlines? Why was the United Kingdom appointing a minister of loneliness? So multiple studies now have shown that it predicts depression, cognitive decline, the decline in physical function, poor health-related quality of life, and now multiple studies showing that loneliness independent of depression is associated with an increased mortality risk. The mechanisms behind this are potentially through chronic stress, and the stress response resulting in increased sympathetic tone. And this figure here was from a meta-analysis in 2010 that just showed that when they looked at loneliness and social relationships, that it was similar to things like smoking and alcohol use, and obesity in terms of the risk of death. And that’s why with many of those headlines that you saw there is this quote about it, having a similar impact of smoking 15 cigarettes a day. So again this is considered a significant public health crisis.

And I think while I’m talking about how loneliness can lead to functional decline, lead to depression, in reality there have also been studies showing that these relationships are more complex. And so for example functional decline, while loneliness can lead to functional decline, functional decline can also make someone feel lonely. And so it’s actually probably more complex and nuanced than we talk about. So what do we know about loneliness in older adults living with HIV, and you think about some of the risk factors I showed, so whether someone identifies as LGBTQ or whether someone is struggling with a substance use problem, which is one of the things we’re talking about today. You might imagine that people living with HIV may have an increased risk for loneliness. So what do we know? And there’s now been maybe a handful of studies specifically looking at loneliness in older HIV positive adults in an area where we still need more research.

So the ROAH study in New York City which is run by ACRIA, and they now have ROAH 2.0 across the United States, initially showed in a survey of a thousand older adults in New York, about a sixty percent reporting loneliness. In their recent ROAH 2.0 in San Francisco they showed that 43 percent of older HIV positive adults were reporting loneliness. And work that we did in San Francisco at two of the clinic’s affiliated with UCSF, again 60 percent, and you can see the breakdown of severity there, that was in a group of three hundred older adults predominantly men. And in Canada I’m going to talk more in depth, but in September when I was at the HIV an aging international workshop, I saw some data presented from the positive brain health now cohort about loneliness, and we’re going to talk more in depth. But you can see one of the challenges in this research, and why I wanted to mention the importance of terminology, it’s because there’s all different ways to measure loneliness, even when you’re specifically focusing on loneliness and not social isolation.

And so many of these studies use different measures, and it can be hard to know how to extrapolate or compare results, but I think here we show that this is definitely a problem for older adultsliving with HIV. And just a reminder, compared to the general population in the U.S., it’s around 40 percent, suggesting that this may be more prevalent in older adults living with HIV. No studies have directly compared HIV positive and HIV negative adults yet. And compared to younger adults, there have been a few other studies just looking at loneliness across the age span. Again no direct comparisons, those studies have reported maybe a 35 to 45 percent range, so whether older adults may have higher prevalence than younger adults, we still need to know. But some suggestion there. So what do we know about associations with loneliness in people living with HIV? I’m gonna focus just on the first two because actually we were talking about this at dinner last night, in terms of risks that gay men are feeling, and meth use, which I know is going to be a talk later today.

So people either experiencing homophobia or starting to experience stigma from ageism and feeling less desirable, less attractive, and sometimes leading to increased substance use, there have been small studies in HIV looking at differences in sex, as well as race. There’s now been a larger study that came out of Rush in Chicago, showing that actually older black adults had lower rates of loneliness than their white counterparts in that study. Which was opposite of what the researchers had originally hypothesized. Then again smaller social networks, more symptoms, these are all things in the studies of people living with HIV, that have been associated with loneliness, many which are the same as in the general population. So what do we know about the impact of loneliness in older HIV-positive adults? In the ROAH study there was some work suggesting that both loneliness as well as HIV related stigma contribute to depression.

There have been two or three studies demonstrating that there’s increased sexual risk-taking behaviors and people who are lonely. And this is true in older adults, 50 and older, who engaged in increased risky behaviors like condomless anal sex. Some studies showing an association more with social isolation but also maybe with loneliness in terms of medication adherence. And when you look at the outcomes that are studied in the general aging literature, now in HIV we’re starting to have some studies reporting outcomes such as quality of life, and cognitive, and physical function. So I mentioned the study from RUSH in Chicago, this is their center of excellent for disparities in HIV and aging, and there while they showed that older black adults had lower rates of loneliness, they showed that there was as interaction with race and loneliness in terms of its effect on cognitive function.

So while black older adults are reporting lower rates of loneliness it, was more associated with in cognitive impairment. In our work in San Francisco we looked at both quality of life and physical function as outcomes, in univariate analysis there was an association with loneliness and both of these. When we added depression into the model the association with loneliness was no longer significant. And then we’re gonna talk more on the next slide about the research from positive brain health now, since they know Toronto is one of the sites. But the real challenge here is all of these studies are cross-sectional. And I showed you that slide that these relationships are very complex and likely bi-directional, so right now we just have cross-sectional data and so we really need longitudinal data to be able to understand more about these relationships and what loneliness predicts in people living with HIV.

So I’ve mentioned the positive brain health now data, so for those who aren’t aware a study across Canada: British Columbia, Ontario, and Quebec. In their loneliness study there were 836 participants, who had an average age of 52, they’re predominantly Caucasian, predominantly male, and here they used a one item loneliness question: “Do you find yourself feeling lonely quite often, sometimes, or never?” And to that response they had 64 percent of the participants reported feeling at least lonely sometimes, and I’ll say that this population is very similar to the population that we studied in San Francisco, being predominantly gay men and very similar to the rate that we saw. And this slide is from what Mary Ann Harris had presented in the talk in September and these were some of the association’s that they saw with loneliness in the positive brain health now, and then formulated this model, which i think is a good model of how to how research could potentially be guided to think about loneliness and impact of health.

So they saw associations with stigma fewer social networks, the RAND scale or symptom scores, there are also as associations that were significant in terms of physical activity, opiate use. Which I know is our next talk. And that they did see associations with loneliness in terms of lower cognitive function or poor cognitive performance, both by self-report as well as objective measures, and that there were associations with loneliness and depression, and then loneliness and health-related quality of life. And I think this is a good framework, and talking with Dr. Harris there will be longitudinal data, so I think we’re at a place where then we’ll be able to sort out this model, and understand more the contributors and the consequences of loneliness for older HIV-positive adults.

But as I mentioned while we need to know a little bit more about the outcomes, all of these things are actually interrelated, and some of these are things we’re going to be talking about the rest of the day, and I just want to highlight in particular stigma and trauma, but you can imagine that an older African American woman living in the rural southern United States may have very different reasons to feel lonely than a gay man living in San Francisco. And so part of this is understanding why people feel lonely, because how you would approach it may be different, but I think the idea of stigma so not just racism and homophobia, not just HIV related stigma, but I think we often do not talk about ageism, and those intersecting stigmas. And then the concept of trauma, which I know there’s also going to be a talk later today, and what I often see in San Francisco is traumatic loss, so long-term survivors who lost their entire social networks in the 80s and 90s to the AIDS epidemic, and literally lost multiple partners, and have no support networks anymore.

And that substance, use not just increased risk of substance use which I talked about in terms of methamphetamine, but anecdotally I’ll see patients who are now clean, and have now isolated themselves from their past social networks, because those social networks were based around substance use, and so to stay off drugs they have to isolate themselves and are intentionally isolating themselves. And so this can be a real challenge. So what can we do about this? So I think the first step is to ask about loneliness, and I’ve mentioned some of the ways. I mentioned how positive brain health now studied loneliness. This is from the campaign to end loneliness in the United Kingdom, and there’s going to be several slides I’m going to show from them now, but I like this because they have a lot of practical information, and here I would agree with what they say. You should ask what is feasible for your organization or your clinical practice based on your resources.

And there are very short tools you can use. So they have developed their own tool, But there’s also the De Jong Gierveld scale, which has a six item short form. There’s the UCLA loneliness scale which originally was 20 items but there’s also a three item. And then there’s a lot of single item questions, like the one used in positive brain health now. The CESD even includes a question about how often someone felt lonely in the last week. So there’s a lot of just one item questions, and I’d really encourage everyone to look at that website, because they have in-depth reports on all of these measurements and interventions. So this is the three item UCLA loneliness scale. This is what we used in San Francisco. Three questions: I feel left out, I feel isolated, I lack companionship. And the higher the score the more lonely someone is. So again that does not take very long to ask. Absolutely.

I also work in a very busy clinical practice, and you need to have things that are practical. And this is the loneliness project. I think the reason it’s important to ask about loneliness, is in part to normalize it so that people can talk about their experiences and not feel like they’re the only one. I show this website because it was started by a Toronto-based designer with that purpose in mind. Just to normalize some of the negative emotions that people may experience. If you go to the website you can click and see stories of how people have experienced loneliness. So there’s a lot of intensive work, now that it’s been identified as being comparable to smoking and drinking in terms of mortality risk, on developing interventions there’s still not a lot done in the general population but I want to highlight what has been done so far in in terms of interventions for older HIV-positive adults.

Most of these studies are small. But there was a study of online support group participants. They did actually survey, I think it was around 350 older adults, but it was from different online support groups, and I couldn’t tell what the intervention was, what they were doing in the groups. But they looked at length of time that people participated, the amount of time they spent per week. And those who participated more in an online group had higher levels of optimism, feelings of empowerment, and lower loneliness. There was a small study of 24 women HIV-positive women in Iran, where they were participants in a mindfulness based cognitive therapy intervention for eight weeks. In that study they looked in a pre/post fashion, and showed a decrease in loneliness scores. And then in the U.S. there was a telephone based intervention, focused on coping skills, and this was pilot work which looked at a group of around 45 older HIV-positive adults. They had 12 sessions, all done over the phone, but they were focusing on coping skills and living with chronic illness.

And that intervention did show you they used a waitlist control, but they did show that there was a reduction in symptoms of loneliness. And then finally some of these things that travel along with loneliness that we talked about, like smoking use, and risky sexual behaviors. These are things that some of the interventions to address those issues have also shown a benefit in reducing loneliness. So in New York City, in one of their smoking cessation trials they had a group based in person intervention for smoking cessation, and those who participated in the group showed reduction in loneliness scores. And that was compared to people who just did an online individual module about smoking, who did not show a decrease in loneliness. Here in Toronto there was actually a study looking at counseling men on risky sexual behaviors, and there is a secondary outcome again, that was peer counseling, I think seven sessions about two hours in length, and there they also showed a benefit in reducing loneliness. Even though the focus is on reducing condomless anal sex with HIV negative partners.

So again sometimes there are these secondary benefits just by interacting with others. But I think you can consider all of these things direct interventions. This is again from the campaign to end loneliness and I like their framework. If you’re gonna try to tackle what is a public health problem, you have to have a public health approach and so it’s not just referring people to interventions but how are you going to reach the people. Lonely older adults are sometimes the hardest people to reach. The most lonely. Understanding why someone feels lonely, so again all those different things depending on someone’s life situations, they may have very different reasons for feeling lonely. And then how are you going to support someone to maybe go to the interventions or engage in groups. And then there are varies of different interventions that have been studied mostly focused on either existing relationships, new connections, as well as personality and psychological changes, but also acknowledging “how do you get someone to your groups” or “to your interventions”, what’s the role of technology?

Sometimes there’s concerns about older adults, and not just their access, but also how well they can use technology. And really it’s at the community and the local level, to understand how the community as a whole is willing to support older adults and people who are feeling lonely and really developing strategies to address all of this, which is what many local communities in the United Kingdom are attempting to do. So I think practically you may be saying, okay I am NOT ready to try to take on a community level change, but I encourage you’re all here in the room, maybe there are ways that you can agree on which measurements you might use, so that different organizations you can compare and share resources, and partner with each other. So if you’re a busy clinician you may say I can’t offer direct intervention. We started offering classes at San Francisco General, and it does take more work to take on those additional groups.

So maybe you can’t offer but you can partner or refer to other community organizations. Also thinking about how you can reach those who are most lonely. So it may not be the people who are regularly coming into medical care, who are the most lonely. So how can you outreach in the community and partner with organizations that can go to people’s homes or go to other parts of the community and do outreach. And I know there’s gonna be a talk later today also about resilience, and I think this is important because I think so many times in HIV and aging conversations it seems like all doom and gloom. And there’s an emphasis on being lonely or being isolated, but I think it’s also knowing that there is literature to support that. Older adults have more resilience than younger HIV-positive adults.

And how can we draw on these strengths in our patients in our clients and really support them to stay resilient and share their experiences. And so in summary, because I want to make sure we have time. Just understanding that loneliness and social isolation are separate, they’re interrelated, but they’re both important. That these relationships are with depression, with substance use, with quality of life, are all complex and interconnected. HIV positive adults may be at higher risk or have a higher prevalence of loneliness. In people living with HIV it has been shown to be associated with depression substance use, and now some data suggesting on cognitive function and quality of life, that there are simple tools that you can use to screen for loneliness and that there is now some emerging evidence about interventions that might be of use. And if you take away nothing else from today, because I think this will be the topic of today, is really needing to address the social health of people that will actually impact their physical health as well. And with that I’ll leave it open for questions. [Applause]