The growing focus on aging with HIV, especially for people over 50, has led to a closer examination of isolation. The concept of isolation has long been a concern in geriatrics because it’s known to have a negative effect on health. Well, it turns out that there are actually ways to measure isolation.
For example, do you have someone you can talk to openly about your problems? Who can help you if you get sick? Who can lend you money, or cook and clean for you when you need it?
The measurements vary, depending on who’s doing the measuring. There’s a difference between the number of contacts vs. a lack of desired contacts. A spouse may be viewed differently—count more—than another family member or a friend. Do you have more than six people to turn to, for example, or are you satisfied with the number of helpful people in your life?
“Isolation” is not the same thing as “loneliness.” Isolation is basically a separation from others, whereas loneliness is a negative emotion. It’s a perceived lack of connection when you want it.
Different groups of people may have different networks of support.
“Certain populations, such as low-income, minority, and lesbian, gay, bisexual, and transgender elders, may be disproportionately affected by the social determinants of health,” according to a 2020 report from the National Academies of Sciences, Engineering, and Medicine, funded by AARP. The authors add, “It is critical to have assessment tools for social isolation and loneliness that do not further exacerbate inequalities between minority or at-risk groups and the general population.”
The report, Social Isolation and Loneliness in Older Adults: Opportunities for the Health Care System, is available as a free download online or for sale as a book.
The De Jong Gierveld Loneliness Scale asks you to consider such statements as There is always someone I can talk to about my day-to-day problems; I find my circle of friends and acquaintances too limited; and I can call on my friends whenever I need them.
The Berkman-Syme Social Network Index asks how many times you talk on the phone with family or friends in a typical week, and how often you get together with them. It also asks how often you attend church or club meetings.
The National Institutes of Health (NIH) lays out definitions and measurements of social support, social distress, and companionship, across various ages
The Duke [University] Social Support and Stress Scale (DUSOCS) measures both the support and the stress from people in your life. According to the questionnaire, “A supportive person is one who is helpful, who will listen to you, or who will back you up when you are in trouble. A person who stresses you is one who causes problems for you or makes your life more difficult.” Then you get a list of people to check off as providing support or causing stress, including a spouse or significant other, children and grandchildren, neighbors, church members, and co-workers. You might want to bust out the calculator, because these helpers and stressors get measured according to a point system. (Go to fmch.duke.edu/sites/cfm.duke.edu/files/cfm/Research/HealthMeasures/DUSOCS.pdf.)
The National Institutes of Health (NIH) lays out definitions and measurements of social support, social distress, and companionship, across various ages in its Social Relationship Assessment Battery, part of a larger “toolbox” of looking at how people function. Look for those three subheads at ncbi.nlm.nih.gov/pmc/articles/PMC3759525. For example, under “companionship,” the article says that, “Intimacy refers to the availability of people with whom one feels emotionally close or connected.”
There is even a Campaign to End Loneliness, by a non-profit organization of the same name based in London. The campaign, which also considers all age groups, has provided three simple measurements for loneliness: I am content with my friendships and relationships. I have enough people I feel comfortable asking for help at any time. My relationships are as satisfying as I would want them to be. Their report, The Psychology of Loneliness: Why It Matters and What We Can Do, available free online, dives into suggestions for change, such as looking at your thinking patterns. According to the organization, “Nobody should be lonely in older age. We believe that loneliness is not inevitable. People of all ages need connections that matter.”
Creating your own survey
For several definitions and measures of isolation and loneliness from a number of researchers, go to ncbi.nlm.nih.gov/books/NBK537897.
With all the different ways of looking at isolation and loneliness, what may be most important is what matters the most to you. After that, it may be a matter of keeping track of your progress in getting and maintaining the support that you want or need—or feel that you need.
In March, the National Institute of Aging uploaded a YouTube video exploring social isolation and loneliness during the COVID-19 quarantine: “Many older adults feel socially isolated and lonely, which leaves them vulnerable to related health problems such as cognitive decline, depression, and heart disease.” The speakers address health issues and how to stay connected during and after the COVID-19 pandemic. Watch youtube.com/watch?v=WBJclABlg_U. Go to nia.nih.gov.
In and out of isolation
“Thanks for turning me on to Positively Aware about 30 years ago,” said the message on my voice mail at work.
It was a reader from San Francisco now living in Oregon. I had just written the above piece for Positively Aging and hadn’t considered Positively Aware as a resource that helps people with isolation. I called Eduardo back.
“It’s so hard to find something that reflects the issues that we deal with,” he told me, “so the magazine really helps, even if you don’t meet the person in the story.”
He got a number of clinics and hospitals to subscribe as well over the years. He loves the annual HIV drug guide. Recently, he had to pull out the drug guide to show a hospital staff member that she was giving him the wrong medication. The woman got very angry. He also said he needed to take his HIV pill with food, but it wasn’t dinnertime. So she wrote on his chart, “Refused medication.”
“It’s like an Alice in Wonderland environment sometimes,” Eduardo said. He added, “It’s amazing how many drugs there are and how many combinations exist.”
In San Francisco, his relationship of 10 years broke up shortly before his move two years ago. He couldn’t afford to stay in the city on his own. “She’s come up a couple of times to visit,” he said.
He was now out in the middle of nowhere, but with his beloved German Shepherd, Kogi. Then Kogi got sick and he made the heartbreaking decision to put Kogi to sleep. “It was the hardest thing I’ve ever done. But he was starting to suffer. There was nothing that could help. So not only was I out here in the boonies, but I lost my best friend. It put me in extreme depression. I actually stopped taking meds for three months. I’m back on meds now and undetectable.”
Now he’s living in a convalescent hospital where he’s recovering from minor brain surgery for hydrocephalus. “It’s locked down because of COVID. I can’t go anywhere except medical appointments. People can’t see me. My case manager couldn’t get an appointment.”
He gave me the new address for his subscription.