Improving the health and well-being of sexual and gender minority older adults

Aging with Pride: National Health, Aging, and Sexuality/Gender Study

Aging with Pride: National Health, Aging, and Sexuality/Gender Study (NHAS) is an NIA-funded study that involves more than 2,400 older adults ranging in age from 50 to more than 100 years old. The study’s goal is to better understand the aging, health, and well-being of SGM adults in midlife and older age. 

Karen Fredriksen-Goldsen, Ph.D., professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, initiated and has been leading the study since 2009.

“This long-running study has been important in identifying health disparities and factors that account for the health and well-being of SGM older adults,” said Fredriksen-Goldsen. “Most people don’t understand the ways in which sexuality and gender can affect health and quality of life.”

In 2013, Fredriksen-Goldsen and colleagues analyzed data from a telephone survey of adults aged 50 and older in Washington state. Respondents who self-identified as lesbian, gay, or bisexual were more likely to report disability, poor mental health, smoking, and excessive drinking than heterosexual respondents. In 2016, Fredriksen-Goldsen and colleagues analyzed population-based data from the National Health Interview Survey, 2013-2014, to further investigate health disparities by sexual orientation, gender, and age. Findings showed that lesbian, gay, and bisexual older adults, compared to heterosexual adults of similar age, were more likely to report poor general health, mental distress, disability, sleep problems, and higher rates of nine out of 12 chronic conditions, including low back pain and a weakened immune system. They also found elevated rates of stroke, heart attack, asthma, and arthritis.

Building on this research and other earlier work, NHAS researchers have been identifying risk and protective factors and mechanisms that affect the health and quality of life of SGM older adults — with the ultimate goal of improving the health of this demographically diverse population.

In a recent analysis using NHAS data, researchers explored the utilization of eight different preventive screenings by 2,514 participants aged 50 and older who identified as lesbian, gay, bisexual, or transgender. Of those, 165 identified as transgender. The study found that compared with the other SGM groups, transgender participants had significantly lower odds of completing four out of eight of the recommended preventive health screenings: mammogram; pap smear; osteoporosis test; and prostate-specific antigen test, which is used to screen for prostate cancer. These findings suggest that health disparities may vary within SGM communities.

More than 95% of volunteers in the NHAS study have continued their participation year after year. “People are very committed and see themselves as being an important part of a study that will help support health in these communities for generations to come,” said Fredriksen-Goldsen. The results may help improve health and well-being for these individuals and future generations of SGM older adults, as well as for other diverse populations.

“Findings from our study of diverse sexualities and all genders shed light on how social, behavioral, and environmental factors such as exclusion, isolation, and barriers to care are linked to health disparities,” said Fredriksen-Goldsen. “What we learn could have important and broader implications for our increasingly diverse aging society.”

Cognitive impairment and dementia in SGM older adults

SGM older adults may also be at higher risk for cognitive impairment and dementia. Some of the risk factors associated with developing dementia in the general population, such as social isolation and loneliness, may be even more prevalent in SGM older adults. But little is currently known about how these factors may affect the SGM population’s risk of developing dementia.

Jason Flatt, Ph.D., a professor and researcher at the University of Nevada, Las Vegas, is currently leading a five-year NIA-funded study to investigate the prevalence and risk of Alzheimer’s disease and related dementias in SGM older adults.

While in the Los Angeles and San Francisco areas, Flatt and his team worked with 61 SGM older adults aged 58 to 84 and assessed their memory and thinking using The Telephone Interview for Cognitive Status (TICS), an 11‐item screening test of global cognition. They found that 40% reported memory problems and 43% were experiencing cognitive impairment. In comparison, one analysis, for example, found that 11% of adults aged 45 and older reported subjective cognitive decline.

To investigate differences in subjective cognitive decline between SGM and non-SGM populations on a larger scale, Flatt and a team of researchers used data from the CDC Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is a state‐based phone survey that collects data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services. Using data from 2015 to 2018, they found that more than 3,500 respondents aged 45 years and older in 25 states provided data on their sexual orientation and gender identity and answered questions about their memory and ability to complete daily activities. Of the total respondents, 3% identified as SGM and 97% identified as non-SGM. Comparing the two groups, Flatt discovered that about 16% of SGM older adults reported experiencing worsening confusion or memory issues (subjective cognitive decline) compared to 10% of non-SGM older adults.

SGM adults were more likely than non-SGM adults to report that subjective cognitive decline interfered with their ability to work, volunteer, or engage in social activities outside the home. They also were more likely to report having poor or fair health, diabetes, or a depressive disorder. However, there was no difference in the proportions of SGM and non‐SGM adults with subjective cognitive decline who reported talking to a health care professional about it —the result was 47% in both groups.

Despite the data collected, there are still many unanswered questions, Flatt said. For example: What are the underlying reasons for higher levels of self-reported cognitive decline in SGM older adults? Are SGM older adults more likely to have health conditions, such as cardiovascular disease or high blood pressure, that are known to be associated with dementia? Are mental health issues, such as higher rates of depression, a factor?

“We need more research to really tease out what’s happening [with dementia and SGM older adults], with the goal of improving the lives of our aging community that are LGBTQIA+,” said Flatt.

Life experiences and social networks of SGM older adults

Social environments are important for healthy aging and can vary across a person’s lifetime. Tara McKay, Ph.D., a professor and researcher at Vanderbilt University, is leading the Vanderbilt University Social Networks, Aging, and Policy Study (VUSNAPS). VUSNAPS is a five-year NIA-funded study on the effects of social networks on health and aging in SGM older adults. Researchers have collected two of three planned waves of data from 1,256 older adults who were 50 to 76 years old and living in Georgia, Alabama, North Carolina, or Tennessee at the time of the first data collection.

“Very little research has focused on how the social lives and policy environments experienced by older SGM adults affect their health and aging outcomes, their fears and expectations about aging, and the kinds of support and health care they can access in tough times,” McKay said.

In studies using VUSNAPS data, McKay and her collaborators examined associations between having an affirming care provider — one who understands and is accepting of LGBTQIA+ health, identities, and behaviors — and the likelihood of receiving certain preventive care. Results showed that SGM older adults with an SGM-affirming provider were 4% more likely to have yearly check-ups, 7% more likely to have ever had a colorectal cancer screening, 8% more likely to have had a recent flu shot, and 36% more likely to have had a recent test for HIV, compared to those who reported a usual source of care that they did not perceive as affirming.

A second study focused on the opportunities affirming care may provide for HIV prevention among gay and bisexual men in VUSNAPS. A significant innovation in HIV prevention is the use of HIV treatment to prevent viral transmission. The researchers found that awareness and understanding of this preventive approach was higher among HIV-negative men with an SGM-affirming care provider than those who reported a usual source of care that was not perceived as affirming. Having an affirming health care provider was also associated with more accurate perception of HIV risk among HIV-negative men.

McKay is also using VUSNAPS to train and retain the next generation of SGM health disparities researchers. She has received research supplement awards from NIA that are intended to diversify the research workforce by recruiting and supporting early-stage and other eligible investigators from underrepresented groups in health-related aging research. These funds have supported new trainees and the expansion of data collection to incorporate several biomarkers from the VUSNAPS sample, including DNA and blood samples. This work has been featured on the PBS Aging Matters Series and highlights how experiences of discrimination are linked to processes such as inflammation, biological aging, and sleep quality.

Expanding investments in SGM research

The projects described above represent just a few of NIA’s investments in research on the health and well-being of people who identify as SGM. Others include:

“SGM aging health research is a relatively new but growing field,” said NIA’s Gerald. “One of the big challenges is the lack of available data on SGM older adults, especially on those who are also members of other health disparity populations.”

NIA-funded researchers will continue to address this gap through studies that aim to better understand health disparities and improve health outcomes for SGM older adults.

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