Like most Americans, B. R. Simon Rosser and his husband don’t exactly have a fail-proof plan for long-term care.
“Our plan is to stay eternally young,” jokes Rosser, professor of epidemiology and community health at the University of Minnesota School of Public Health and director of the sexual health minor. “We have not discussed it yet. I think this is something in the back of the minds of many LGBTQ people as they age and not something that is easily talked about.”
About 70 percent of Americans turning 65 today will need some type of long-term care in the future. But the LGBTQ community faces additional challenges: Older people in the LGBTQ community are at higher risk of discrimination in nursing homes and home care. More LGBTQ people anticipate needing care from non-family members. And research on aging LGBTQ folks is scant.
“In the broader literature on LGBTQ+ and aging, there are a couple of good surveys, but in general, we know very little,” says Rosser, who discovered how few studies had been done when his husband got prostate cancer.
So, Rosser jumped at the opportunity to collaborate on a new study that’s setting out to find the best ways to train nursing home staff to take care of aging LGBTQ people. It will be the first U.S. study to address the needs of the LGBTQ senior community in assisted living by testing how well a training intervention program helps eliminate discrimination.
Reason for fear
Harry A. Hartigan, a 74-year-old gay co-pastor in South St. Paul, advocates for good care for LGBTQ seniors. But he admits his own future care plan is sketchy.
“My hope is that I go down quickly, that I either have a heart attack or go to sleep and don’t wake up,” he says. “I have a panic about it.”
Hartigan says his greatest fear—that he’ll end up incapacitated in a nursing home with Alzheimer’s like his dad, “looking at a wall, going, ‘What the hell?’”—is compounded by his sexuality.
And he’s not alone.
“What I see and hear from [LGBTQ] folks is their fear,” Hartigan says. “They don’t want to end up at a place where they’re going to sit and rot.”
But they also don’t want to give up their identities.
“If you spent your whole life being an out and proud member of the community, and then you’re put someplace where everyone else is heterosexual, it can be very alienating,” Rosser says. “We worry about things like homophobia from residents. Nobody wants to go somewhere where they might be beaten up or rejected.”
According to the Aging with Pride: National Health, Aging, Sexuality and Gender Study conducted in 2016 (© LGBT+ National Aging Research Center, 2016, University of Washington, Seattle, WA):
Estimated number of adults ages 50 and older who self- identify as lesbian, gay, bisexual, or transgender in the U.S., including 1.1 million ages 65 and older
Year the number of LGBTQ older adults will exceed 5 million (estimates more than double when considering same-sex behavior and romantic relationships)
Unfortunately, their fear isn’t unfounded, says University of Minnesota School of Public Health associate professor Tetyana Pylypiv Shippee, who is leading the new research with Rosser. Most nursing home staff are not trained in meeting the needs of LGBTQ residents, especially transgender residents, she said.
“Many people go in the closet in long-term care, which is so sad for people who fought for so long to be their true selves, and now in long-term care, they’re scared to share their true selves,” says Shippee, who is also the associate director of research for the Center for Healthy Aging and Innovation. “But especially for older trans people, it can become a huge risk for overt discrimination.”
That translates into people not receiving the care they need. Many of the LGBTQ seniors Hartigan knows want to remain in their homes as long as possible.
“The fear for someone who is in the LGBTQ community is, ‘Will we be understood? Will we be accepted? How will we be treated?’” he says. “So, we want to be independent, but anything can happen in the blink of an eye: a heart attack, stroke, broken hip.”
One of his friends who has heart and mobility issues insists on staying in his south Minneapolis home, Hartigan says, even though the friend has to navigate a staircase. “His perceptions are that ‘if I leave my house, I lose all control,’” Hartigan says. “‘In my house, I make the rules, but if I go someplace else, I don’t know who’s going to be next door or above me. I don’t know who’s going to be taking care of me.’”
While most adults share similar fears about independence and aging, most heterosexual, cisgendered seniors have a fallback that many in the current cohort of LGBTQ seniors do not—adult children. Same-sex marriage wasn’t legalized when most were of childbearing age, and adoption and fertility options were much more limited than they are today.
Need for training
You can have excellent, well-meaning staff, but if they don’t have any experience or training with LGBTQ people, “the chances of something going wrong are high,” Rosser says, especially considering that pay is often low, and many staff members emigrated from countries steeped in homophobia.
“About 25 percent of staffing is by immigrants from Africa and the Caribbean, two of the places with the highest levels of homophobia,” Rosser says.
Add to that that many older long-term care residents may have more conservative social views and that many nursing homes are run by religious organizations, some of which may not be LGBTQ-friendly, and you get high potential for discrimination.
Nursing home aides who don’t receive any type of training on meeting the needs of LGBTQ people often misgender trans residents, Shippee says. In one state, staff members refused to wash a lesbian resident. In another, two residents found having sex were separated and sent to different units.
In the wake of such incidents, two states—Massachusetts and California—have mandated training. But until the current study, there haven’t been any evidence-based training programs. In Minnesota, some nursing homes have used a program called Training to Serve (part of Rainbow Health and the model the researchers are now evaluating). But even here, it’s not easy to find LGBTQ-friendly homes.
“Many people go in the closet in long-term care, which is so sad for people who fought for so long to be their true selves.”
Tetyana Pylypiv Shippee
In a class Shippee teaches on long-term care and equity, she assigns her students case studies. When she asked students to figure out how an LGBTQ person on Medicaid could find care, two of her students called the state Senior LinkAge line, saying they were a lesbian woman looking for LGBTQ-friendly care.
“They were told there wasn’t any way to find that,” Shippee says.
Even facilities that make fair treatment of LGBTQ residents a priority sometimes fail to uphold those standards when other stressors, like lack of staffing and a global pandemic, come up.
“When push comes to shove, that priority goes out the window,” Hartigan says. “So, the training can’t be a one-time training; it has to be annual, ongoing.”
To be sure, attitudes are changing. Some nursing homes hang rainbow flags during Pride Month or participate in the Pride parade. In 2002, 90 percent of LGBTQ older adults said they were not sure they would receive safe services from a provider (of any type, not just long-term care) if that person knew they were LGBTQ, according to surveys conducted by advocacy organizations and research teams. When the question was asked again in 2012, 80 percent of LGBTQ older adults said they were not sure. And in 2022, the number dropped to 15 percent
“Obviously, there’s still fear and trepidation—15 percent is still quite a substantial number—but [that drop] was amazing,” says Rajean P. Moone, associate director of education for the U’s Center for Healthy Aging and Innovation, who led many of the Training to Serve sessions in nursing homes.
If the study is successful and states start mandating high-quality, evidence-based training, that number could drop even more. The best possible outcome, to Moone, would be an amazing training program that helps ensure that residents’ lives are the best they can be.
In other words, what we all want.
“I’m still a gay man, and I want to be treated with respect and dignity,” Hartigan says. “I want what everyone else gets.”