Public health policy has long failed to meet LGBT people’s healthcare needs—whether due to lack of access or outright discrimination. New research suggests that these discrepancies may affect members of the community through their senior years, highlighting the need for continued research into how best to support them at all stages of life.
It appears that members of the LGBT community may be at a higher risk of showing early signs of dementia than the straight, cis-gendered population. Presented at the annual Alzheimer’s Association International Conference in Los Angeles, a study found that LGBT people are more likely to report that they’ve noticed trouble with their memories or feeling confused in the past year. Although dementia requires a diagnosis from a doctor, in many cases cognitive decline is the first symptom.
Researchers from the University of California, San Francisco, analyzed data from the 2015 Behavioral Risk Factor Surveillance System, a telephone survey annually administered by the US Centers for Disease Control and Prevention. The survey called more than 44,400 adults aged 45 to 80 across nine states, and about 3% identified as members of the LGBT community. When the research team controlled for other demographic factors, they found that about one in seven members of the LGBT community reported trouble with their cognition in the past year, compared to one in 10 straight, cis-gendered people.
These survey results can’t explain why this is the case. But it’s likely that social factors play a major role, says Jason Flatt, a UCSF epidemiologist focused on aging issues who presented the work. LGBT people are more likely to live alone—a factor that can predict loneliness (paywall)—and to have experienced discrimination, rejection, harassment, and trauma based on their sexual or gender identity, he says. All of these are contributing factors for substance abuse and depression, which have been tied (paywalls) to developing dementia, too.
Additionally, sexual and gender minorities living with dementia may not have the resources they need for care. “LGBT people can’t rely on traditional support structures,” Flatt says. Many are unmarried, or don’t have children, which means that the majority of their support may come from their peers—who are also aging. And because of workplace discrimination against people for their gender and sexual identities—which is still legal in the US—many older members of the LGBT community may not have the financial resources to find additional care for themselves.
Even with support, because so many members of the LGBT community have been mistreated by the medical system, many are likely to avoid talking to their doctors about their cognitive decline.
“[This research] is starting to confirm what we as activists have seen for several years,” says Tim R. Johnston, the director of national projects at Services & Advocacy for GLBT Elders, a non-profit based in New York, who wasn’t involved in the study. There’s been little research on the prevalence of dementia among sexual and gender minorities. In fact, Flatt and his colleagues presented the first work on the prevalence of dementia within the LGBT community in the US just last year.
This is because for years, doctors weren’t asking their patients about their sexual and gender identities, Flatt told Quartz. Some physicians have cited that they thought it was a personally invasive question, or that it wasn’t an important part of the visit. It’s now becoming increasingly clear that these identities play a role in mental and physical health. Health care providers need to ask their patients these questions in a way that makes patients feel safe to disclose.
In 2017, the National Survey of Older Americans Act Participants, a survey run by the Department of Health and Human Services to assess what federal services older adults need, eliminated questions about gender and sexual identity. Although it reinstated questions about sexual identity the following year, gender identifying questions remain excluded. Last year, rumors circulated that the CDC also planned to eliminate these types of questions in the phone survey used for this study—although the organization denied that it had finalized the text for 2019 at the time. At the moment, the annual survey’s questions pertaining to the LGBT community are optional, but have been included in 30 states.
Omitting questions about identity serve to erase the LGBT community and their needs. “If we can’t collect this information, we can’t know how people are doing over time,” Flatt says. And if we can’t identify disparities like increased risks for dementia, we can’t think about solutions to address them.