At the On Aging 2022 conference, Elliot Sklar opened his talk with a question for the audience:
“What challenges or different experiences do older adults in the LGBTQ community face?”
He was surprised no one had an answer. So, he followed it up with two more questions:
“At a primary care physical, were you ever asked if you wanted an HIV test?”
Once again, there was silence.
“Who has been asked about going on PrEP prevention therapy for HIV?”
The response was the same. It was clear: No one in the audience was ever asked these questions by their doctor.
Despite the fact that Sklar has been married for 17 years, he considers it an example of the different experiences members of the LGBTQ community like him face when receiving health care versus their non-LGBTQ peers.
“These life experiences change people’s perspective and willingness to receive and seek out health care,” explained Sklar, PhD, MS, an associate professor at Nova Southeastern University in Fort Lauderdale. “Research shows that LGBTQ older adults are about five times less likely to seek social services or medical care because of negative experiences in their life course. We’re not attuned to the different experiences and how traumatizing they can be.”
A history of LGBTQ trauma
Sklar said a person born in 1950, who is 72 today, faced a litany of traumatic events throughout their formative years. They were only 19 when the Stonewall Riots of 1969 occurred in New York, launching the fight for LGBTQ civil rights; 23 when homosexuality was no longer considered a mental disorder—which might make them uncomfortable receiving mental health services; 31 when HIV was discovered; and 65 when gay marriage became legal in the U.S., resulting in protections such as coverage under the Family Medical Leave Act—allowing spouses time off for caregiving without jeopardizing their employment.
“Because gay marriage has only been legal for seven years, many people have not gotten married, don’t understand the point, don’t recognize the protections that marriage affords or never thought it would be a reality for them,” Sklar explained. “It’s important for caregivers to think of protections.”
Even when people are married, he warned, challenges come up if they don’t share the same last name. If you go to urgent care or the hospital, you will need a Hospital Visitation Form on hand to visit your loved one. To avoid further hassles, he recommends keeping a photograph of your marriage license on your phone and a living will handy; if you’re unable to make medical decisions, the document will speak for you.
Discriminatory practices in health care
Sklar witnessed discrimination early in the pandemic when gay men were prohibited from donating plasma, which was being used to treat COVID-19 patients. He believes situations like this contribute to mental health issues. Prior to the pandemic, he said the LGBTQ community was known to have greater mental health issues than the general population.
“Limited research shows that the pandemic has increased those disparities and made worse the mental health of some community members,” he explained.
While the pandemic changed housing for a lot of people, with inflation and relocating, Sklar emphasized one of the issues many older LGBTQ adults worry about is finding a long-term care community that will treat them well. Mistreatment in long-term care communities was a big concern prior to the pandemic and remains one today. SAGE and the Human Rights Campaign Foundation, both advocates for the rights of LGBTQ older adults, created the Long-Term Care Equality Index (LEI) to promote equitable and inclusive care for lesbian, gay, bisexual and transgender seniors in residential long-term care and senior housing.
“Ahead of the pandemic, about 18% of senior living communities had policies that prohibited discrimination based on sexual orientation or gender identity,” Sklar said—noting in a large state like Texas, only four senior housing communities are LEI partners. “It’s hard to get into a care community to begin with. Imagine if the list is only four places in the whole state?”
Acceptance starts with understanding
Sensitivity, he said, begins with language. Physicians shouldn’t make assumptions that the patient’s spouse is a different gender or assume the person wants to be referred to on paper as the gender they present. He emphasized we need to help train health care providers on how to be more inclusive, sensitive and compassionate.
“It goes back to reminding them of their professional oath,” he explained. “What I think is most helpful is having conversations with people. There are no tips that speak to life experiences and how it shapes their viewpoint. But hearing about their life experiences might make you more sensitive to the challenges the person has.”
A community of caregivers
Prior to the pandemic, about one in five LBGTQ older adults reported they were caregivers versus one in six non-LGBTQ adults, Sklar explained. He estimates that figure has gone up. The reasons are varied, from an assumption that LGBTQ adults without kids have more free time for caregiving to caring for friends—members of their chosen family.
“Caregiving is stressful in general,” Sklar said. “Being a patient and receiving health care is stressful. You couple it with trauma experienced in the life course and it’s more so.”
New worries for LGBTQ community
Recent concerns of the LGBTQ community include legislation changes, including a new law in Oklahoma that bans non-gender identity on birth certificates, which Sklar said makes it difficult to receive gender-affirming health care. There’s also a lot of concern about Roe vs. Wade, which if overturned, he said, may set the precedent for gay marriage to be overturned.
“Before it [gay marriage] was legal on a federal level, it was legal on a state-by-state level,” he said. “There is a lot of worry it will go back to that.”
If it does, he fears protections for caregivers like FMLA will go away.
“Does that mean if my husband is sick, I’m not entitled to take time off to be with him?”
In honor of Pride Month in June, concerns unique to LGBTQ older adults and their caregivers will be addressed during virtual discussions hosted by WellMed Charitable Foundation throughout June. The Pride-themed “teleconnection” events give everyone an opportunity to learn something new, ask questions and problem-solve with experts.
Register for the free program online or by calling 866-390-6491.