The first-ever LGBT longitudinal study, Aging with Pride, has been launched thanks to UW researchers. The data-gathering — which only allows for identifications of lesbian, gay, bi, or trans — is ongoing, and allows for multiple sub-studies on an under-studied, older LGBT population. On top of that, it collaborates with 17 community agencies in every U.S. census division.
Working across the nation, the federally funded study has surveyed approximately 2,400 adults ages 50 and older. The goal of Aging with Pride is to better understand the aging, health, and wellbeing of midlife and older LGBT adults and their families.
In-depth interviews are conducted, bio-markers are taken, and functional assessments are made. The study features at least two cohorts because one group, ages 67 to 102, was a silenced generation, explained principal investigator Dr. Karen Fredriksen-Goldsen.
“Those people were growing up and coming of age at a time when same-sex behavior and identities were highly stigmatized and criminalized,” Fredriksen-Goldsen said. “But also providers don’t know how to address their needs in a culturally competent and sensitive way. That combination has just led to invisibility.”
The second group in the study is the baby boomers, a group that, by contrast, came of age during the Stonewall riots.
The study stratifies data by sex, gender, race, and ethnicity. It’s aimed at understanding how identities change over time. Researchers have come to notice that different things are happening in different locations, which seems to relate to an area’s political climate.
“We’ve been successful for getting people to participate,” Fredriksen-Goldsen said, “but there’s a lack of access to care … The strongest predictor of all those health disparities is histories of victimization and discrimination.”
Results thus far are the opposite of the scientists’ expectation: The baby boomers aren’t as well off as the silenced generation because those who didn’t identify faced less discrimination. In addition, both of these groups have community-based support, but as they get older their support system fades as members of their community become limited by age or pass away.
“That’s often when they become very isolated, because their peers aren’t available and they might not have cross-generational ties [like children],” Fredriksen-Goldsen said. “The protective factors, creating strong social networks and social supports, definitely offset the risks they have. It’s a resilient, at-risk community; most of these people are aging well.”
A co-investigator of the study, Dr. Hyun-Jun Kim, began by working as a research assistant, helping Fredriksen-Goldsen conduct older LGBT disparity analysis. The two wanted to further understand if there were other associated factors to the disparities they were seeing. Seven years ago, the researchers didn’t have any data, but there was evidence of disparities for the younger LGBT population. This led them to consider a new question: What’s going on with older LGBT adults?
“I’ve been working on the intersectionality issues, and an LGBT person is different in their social positions with economy, gender,” Kim explained. “Other studies collect LGBT [data] all together, but the sample size is not sufficient. Our study, we made a clear goal: We want to secure efficient sample size for subgroups because we believe there’s some diversity in this population.”
Kim explained that other studies are all one-time and cross-sectional, which means only associations can be made without knowing what comes first. This study, however, focuses more on intervention, what can change, and what will produce better health.
“I want to say our study has been really successful in terms of response rate [and] it’s all because of our participants,” Kim said. “I really appreciate their contributions. Some of them have functional limitations, so completing the survey question isn’t an easy job. I feel very optimistic about this study.”
In fact, the study has already created real-time change. Local nonprofit Generations Aging with Pride (GAP) was created out of this study and receives money from the City of Seattle. The organization assesses needs and designs trainings and services for the LGBTQIA+ population. Its goal is to test the first evidence-based trainings in services that care for the niche community. GAP is also partnering with local organizations to make cross-generational support programming to help reduce older LGBTQIA+ isolation.
Rita Smith is an out, older lesbian who is on the board of GAP.
“I feel like we’re just scratching the service,” she said of the organization. “My own bias is that I would really like not just training people to [be affirming], but then to hold organizations accountable, to go in and evaluate.”
Smith proposed creating a Yelp-like website with the names of facilities and reviews for how welcoming they are, and how much they recognize and affirm LGBTQIA+ people.
“They need to recognize [LGBTQIA+] relationships and give them the honor and dignity that everyone deserves,” Smith said. “But especially that we deserve when we’re in a place where we’ve lost some of our abilities and independence.”
Doctor forms that patients have to fill out are a simple but frequent way in which services can forget to recognize the LGBTQIA+ community, their unique risks, and their needs.
“How are the forms set up so that we can disclose easily and comfortably that we are not straight?” Smith asked. “Do the forms just assume everybody’s straight? I don’t think anybody should be forced to identify themselves, but they should be given every opportunity to do that.”
Smith wasn’t openly lesbian until her 30s. Most of her stress and anxiety, she said, was self-imposed. Having been a teacher, Smith knew what would happen if she openly identified as lesbian. At the time, rumors had spread around about another teacher she knew, saying that he was gay. His principal asked if it was true. The man didn’t lie about his sexual orientation and subsequently lost his job.
“So we knew that it wasn’t just a fear that we felt, it was a reality. So I lived with that,” Smith said. “My depression was directly related to the fact that I felt alienated and alone. It caused me to put more of my identity into my teaching because that was the only identity I had.”
But when Smith began identifying as lesbian, she found support within the queer community. That community, however, can’t continue or be readily available without existing resources.
“There is no senior center in Seattle for [LGBTQIA+ people], no senior centers that even do specific outreach or acknowledgment,” Smith said. “As we individually need very specialized care, that level of comfort and familiarity and safety really is very vulnerable.”
GAP, as a result, provides training for organizations that request them, and recently trained Department of Social and Health Services evaluators in Spokane. For Smith, just getting others to put LGBTQIA+ people on their radar is important.
“In any facility you’re going to have LGBTQ people,” Smith said. “Whether they’re out or not, they’re there.”
In her mind, knowing who is LGBTQIA+ is better than assuming they aren’t around until you stumble onto them or they get in your face. Thanks to the Aging with Pride study, GAP can push for change and, even further, statistically support why what they’re doing works.
“I’m doing [this study] to make sure we’re building and strengthening communities of diverse elders,” Fredriksen-Goldsen said. “We want to ensure that all communities are able to age well. Through studying older adults and marginalized communities, it really provides insight into issues we may not have seen in other aging.”