Like most Americans, BR Simon Rosser and her husband don’t exactly have a fail-safe plan for long-term care.
“Our plan is to stay eternally young,” quips Rosser, professor of epidemiology and community health at the University of Minnesota School of Public Health and director of the sexual health minor. “We haven’t talked about it yet. I think that’s something in the back of a lot of LGBTQ people’s minds as they get older and not something that’s easy to talk about.”
About 70 percent of Americans who turn 65 will need some type of long-term care in the future. But the LGBTQ community faces additional challenges: LGBTQ seniors 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 the aging of LGBTQ people is scarce.
“In the broader literature on LGBTQ+ and aging, there are a couple of good surveys, but overall, we know very little,” says Rosser, who discovered the few studies that had been done when her husband went suffer from prostate cancer.
So Rosser jumped at the chance to collaborate on a new study that aims to find the best ways to train nursing home staff to care for aging LGBTQ people. It will be the first US study to address the needs of the LGBTQ senior community in assisted living by testing how a training intervention program helps eliminate discrimination.
Reason for fear
Harry A. Hartigan, a 74-year-old gay co-pastor at South St. Paul, advocates for good care for LGBTQ seniors. But he admits his own future care plan is incomplete.
“My hope is that it goes down quickly, that I either have a heart attack or that I sleep through it and don’t wake up,” she says. “I’m panicking about it.”
Hartigan says her biggest fear — that she’ll wind up incapacitated in a nursing home with Alzheimer’s like her father, “staring at a wall, saying, ‘What the hell?'” is compounded by her sexuality.
And he is not alone.
“What I see and feel LGBTQ people are their fear,” Hartigan says. “They don’t want to end up in a place where they’re going to sit and rot.”
But they don’t want to give up their identity either.
“If you’ve spent your whole life being an open and proud member of the community, and then you’re put in a place where everyone else is straight, it can be very alienating,” says Rosser. “We are concerned about things like the homophobia of residents. Nobody wants to go to a place where they can be beaten or rejected.”
Unfortunately, their fear is not 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 to meet the needs of LGBTQ residents, especially transgender residents, she said.
“So many people go into the closet in long-term care, which is so sad for people who have fought for so long to be their true selves, and now in long-term care, they’re afraid to share her true self,” she says. Shippee, who is also the associate director of research at the Center for Healthy Aging and Innovation. “But especially for older trans people, it can become a huge risk of overt discrimination.”
This results in people not getting the care they need. Many of the LGBTQ seniors Hartigan knows want to stay in their own homes as long as possible.
“The fear of someone in the LGBTQ community is, ‘Will they understand us?’ Will we be accepted? How are they going to treat us?’” he says. “So we want to be independent, but anything can happen in the blink of an eye: a heart attack, a stroke, a broken hip.”
One of her friends who has heart and mobility issues insists on staying in her south Minneapolis home, Hartigan says, even though the friend has to navigate a flight of stairs. “Their perception is that ‘if I leave the house, I lose all control,'” says Hartigan. “‘In my house, I make the rules, but if I go somewhere else, I don’t know who’s going to be next to me or on top of me. I don’t know who will take care of me.”
While most adults share similar fears about independence and aging, most heterosexual and cisgender seniors have an alternative that many of today’s cohort of LGBTQ seniors lack: grown children. Same-sex marriage was not 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 great, well-intentioned staff, but if they don’t have experience or training with LGBTQ people, “the chances of something going wrong are high,” Rosser says, especially given that pay is often low and many workers . members emigrated from countries steeped in homophobia.
“About 25 percent of the workforce is immigrants from Africa and the Caribbean, two of the places with the highest levels of homophobia,” says Rosser.
Add to this 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 have a large potential for discrimination.
Shippee says nursing home aides who receive no training to meet the needs of LGBTQ people often misgender trans residents. In one state, staff refused to wash a lesbian resident. In another, two residents found having sex were separated and sent to different units.
Following these incidents, two states—Massachusetts and California—have requested training. But until the current study, there has been no evidence-based training program. In Minnesota, some nursing homes have used a program called Training to Serve (part of Rainbow Health and the model researchers are now evaluating). But even here, it’s not easy to find LGBTQ homes.
“So many people go into the closet in long-term care, which is so sad for people who fought for so long to be themselves.”
Long-term care and equity
In a class Shippee teaches on long-term care and equity, she assigns case studies to her students. When she asked students to find out how an LGBTQ person on Medicaid could find care, two of her students called the state’s Senior LinkAge line, saying they were a lesbian woman seeking LGBTQ care.
“They were told there was no way to find it,” says Shippee.
Even facilities that make fair treatment of LGBTQ residents a priority sometimes fall short of those standards when other stressors arise, such as understaffing and a global pandemic.
“When push comes to shove, that priority goes out the window,” says Hartigan. “Therefore, the training cannot be a one-time training; it must be annual, permanent”.
Attitudes are certainly 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 kind, not just long-term care) if that person knew they were LGBTQ, according to surveys by defense organizations and research teams. When asked again in 2012, 80 percent of LGBTQ older adults said they weren’t sure. And by 2022, the number dropped to 15 percent
“Obviously there’s still fear and unease, 15 percent is still a pretty substantial number, though [that drop] it was amazing,” says Rajean P. Moone, associate director of education at 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 begin requiring high-quality, evidence-based training, that number could drop even further. The best possible outcome, for Moone, would be an incredible training program that helps ensure 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,” says Hartigan. “I want what everyone else has.”
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