Even if the association between loneliness, social isolation and frailty (and comorbidities) for older PWH is complex and not fully understood, there’s evidence, for people with or without HIV, that loneliness is detrimental to physical health, and is estimated to do as much harm to the body as smoking a pack of cigarettes a day.
“We’re a species that developed to be dependent on other people,” Sean Cahill, of Fenway Institute, said.
Cahill noted that unlike being single, the state of loneliness is subjective. “Loneliness is related to your expectations and if you’re lonely, your social support networks and friendship networks and/or family networks are not satisfactory,” he said. “You may have one really great friend who's dependable, who provides a lot of satisfaction in that person’s life. Somebody else could have 50 friends and be lonely because the relationships are not satisfactory.”
Cahill also noted that many older PWH have additional stressors, including stigma around HIV, early loss of a partner, lack of children or grandchildren (for many), as well as ageism in the LGBTQ+ community, all of which can contribute to social isolation and/or loneliness.
Even if doctors don’t measure or intervene in their patients’ social isolation, there are many things older PWH, whether single or coupled, can do to boost their social support networks, Cahill said. These include, if they’re available, a local LGBTQ+ center, LGBTQ+-affirming elder services, meal programs, bereavement groups, and online support services.
Commit to Connect (bit.ly/3OZSYtY) helps link people living with isolation to programs and resources that build the social connections they need to thrive, said Andrea Callow, a program analyst at the Office of Policy and Analysis at the Administration for Community Living (ACL), which is part of the U.S. Department of Health and Human Services (HHS). The program includes a social engagement innovations hub with best practices and evidence-based interventions from across the U.S. In addition, there are consumer and professional resources and a nationwide Network of Champions, self-identified leaders at the national, state, and local level committed to ending social isolation and loneliness.
For facilities interested in expanding their practice to address isolation and other determinants of health for older PWH, there is the Self-Management Resource Center. ACL also compiled examples of collaborations around the country, including a Texas senior center that provides group therapy for people aging with HIV.
Katie Clark, who leads the HHS Commit to Connect Initiative, shared several interventions that can improve social connection and, ultimately, reduce chronic illness and promote longer, healthier lives.
“That could be group therapy or cognitive behavioral therapy, mindfulness-based practice, community-based exercise or physical activity, or health education courses,” Clark said. “This could include leisure activities or exercise that is conducted by programs and community settings, like tai chi or Silver Sneakers [an exercise program for seniors, with some gym memberships free to Medicare members over 65]. Health education courses might be particularly relevant for older adults or people aging with HIV because a lot of these programs are designed for specific groups in mind, many of them also focus on managing chronic disease and frailty.”
She also noted that technology and phone-based programs can be useful for older adults or people aging in community settings, like those that connect older adults to volunteers. “This could also include tablet distribution, smartphone distribution, specialized apps with virtual senior centers or programming and even voice-activated virtual assistants or kind of social robots, which are more and more common on the market.”
Chronic disease self-management programs, Clark said, can have a secondary benefit of increasing social engagement. “[These programs] help assess and manage their chronic disease through support groups, where you're connecting people with shared experiences in a peer-to-peer format for social support, which we know is a huge protective factor, although they were not designed [for the purpose of] social connection.”
Is there a role of doctors in referring patients to these interventions? Yes, Clark said, noting that doctors caring for patients with HIV are starting to conduct more screening assessments on social determinants of health, including asking about nutrition, housing, transportation, and, increasingly, social connectedness. “More and more we’re seeing [clinicians] ask, ‘do you feel like you have someone you can rely on for social support?’”
But she noted an ethical challenge with screening and referral. Specifically, providers may be naturally reluctant to screen for anything if they can’t address the needs identified in the screening.
“There are a lot of workforce challenges and burden on providers,” Clark said. “And the levels of evidence for programs and interventions are not super rigorous, especially for ones in community settings. If you screen, you want to be able to refer patients to programs that are meaningful to them.
“Ideally [a provider] would be plugged into the community, to have more options for person-centered counseling… where you’re able to spend a lot of time with that patient and identify things that they’re interested in and connect them to a program or service that supports them. It’s tough, because there are a lot of factors that are contributing to someone’s social disconnectedness.”
Optimal person-centered care would mean clinicians coordinating with local agencies on aging and other resource centers in a “no wrong door” approach, she said.