An estimated 44 million Americans work as unpaid caregivers. If they are caring for older adults, as most are, their lives are often incredibly difficult. For those in the LGBT community, all of the stresses of caregiving are compounded.
“LGBT people are more likely than the general population to be a caregiver at some point in their life, and they’re often providing the care in more isolation and with less support than other caregivers, as well as from social services,” said Nate Sweeney, executive director of the LGBT Health Resource Center at Chase Brexton Health Care in Baltimore. The center, a partnership with SAGE (Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders) funded by the Harry and Jeanette Weinberg Foundation, provides services for LGBT caregivers and care recipients. It may be one of the few in the nation.
Fear may make them nervous about anyone coming to their home, and terrified at the prospect of living in an institutional setting.
Sweeney was one of three caregiving professionals who spoke about LGBT caregiving issues at a panel of the American Society on Aging’s national Aging in America conference I attended in Washington, D.C. last week. (The other two: Tom Weber, director of care management at SAGE, and Imani Woody of Mary’s House for Older Adults in Washington, D.C.)
There are currently about 1.5 million LGBT older adults in the United States, a number that will rise to 3 million by 2030, Sweeney said. According to a caregiving report last year by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute, 9 percent of caregivers self-identify as lesbian, gay, bisexual and/or transgender.
Health Problems and Prejudice
Older adults who are gay, lesbian, bisexual or transgender have higher rates of depression, alcohol and drug abuse, heart disease, obesity and risk for HIV. They may have come of age in “a very different social landscape than what is present today,” Sweeney said when I interviewed him this week.
It was not uncommon for LGBT people to be fired from a job because of their sexual orientation or sexual identity. They may have been rejected by their families.
“They also faced a lot of discrimination in health care, so there’s a lot of unmanaged chronic disease, as well as a lot of mistrust of medical systems,” Sweeney said. They may also mistrust social services that cater to the aging population — especially if they had an experience in home care or an institutional setting in which other older adults or staff didn’t welcome them.
As we age, we often begin to lose our independence. Services designed to help fill growing needs may be threatening to LGBT older adults, Sweeney said.
“That’s particularly scary if you’re dependent on someone who doesn’t believe in your lifestyle, or someone who is very judgmental of who you are,” he said. “That can cause a lot of stress and a lot of worry, causing people to start to erase parts of their identity.”
Some transgender people have been able to take advantage of medical interventions, including gender-affirming surgery, under Medicare. That comes with complications, too, Sweeney said, since they may have fewer family to support them with post-operative care.
The Need to Stick Together
Older LGBT individuals have a history — often born of necessity — of making their own families, something Sweeney said he and others call the “Golden Girls” model. Those ongoing friendships, even between exes, are vital.
But they may not be enough as those groups age, and face health problems, together. And unless they are legally married, LGBT couples are not legally recognized and can face a lack of access in health emergencies, for example.
The reverse is often true, as well: More LGBT people will end up being caregivers than the general population (one in four compared with one in five). That’s partly because their siblings are more likely to be married and have children of their own. If an aging parent moves in with a gay, lesbian, bisexual or transgender child, there may be conflict stemming from lack of acceptance, Sweeney said. A parent may refuse to call a transgender child by his or her preferred name, for example.
“That can be very hard, because you know you’re taking care of someone and they’re really hurting you emotionally,” he said.
Support Groups Lacking
Even when LGBT caregivers reach out to others through support groups, more often than not, those groups are not specific to LGBT people. And while they need support on the same issues than any other caregiver does — time away from work, struggling with increasing responsibilities, dealing with role reversal — their identity may be a distraction for the others.
“If someone’s going in looking for caregiving support, they may be the first LGBT person the other people in this Parkinson’s support group [for example] has ever met, and so the caregiver loses the ability to come in and talk about the caregiving stressors and instead is having to spend a lot of time talking about their identity or explaining some Trans 101 things to people,” Sweeney said. They then end up not getting the support they came for.
Sweeney’s group listed these additional factors that can present difficulties for LGBT caregiving:
- LGBT older adults are less likely to be financially ready for retirement and less likely to have long-term care insurance. Most do not fit the stereotype of the rich gay white male “with a place in Florida and a place in Palm Springs,” Sweeney said.
- They are at greater risk of isolation. They’re half as likely to be partnered, twice as likely to live alone and four times as likely as heterosexual older adults to have no children.
- They may live in secrecy. LGBT older adults may still be closeted and fearful of being outed. This may make them nervous about anyone coming to their home, and terrified at the prospect of living in an institutional setting.
- LGBT older adults are five times less likely to seek medical and/or social services for older adults.
The Good News
On the positive side, there has been a growing recognition of the issues of older LGBT people, Sweeney said. Large advocacy groups such as AARP and the Alzheimer’s Association realize that LGBT people make up a significant portion of caregivers.
Woody said health and social services providers can do seemingly small things to be more welcoming to the community. “Wear a [rainbow] flag on your lapel,” she said. “Put a flag in your office.”
For more information and resources, go to the website for the National Resource Center on LGBT Aging.