In the previous Aging in Community column, Daniel Redman discussed key legal documents all LGBT seniors should have, but that are particularly important for people living with dementia. This week, I will focus on barriers to care and what providers can do to protect their LGBT clients or patients.
Barriers to Competent and Effective Care
LGBT seniors are at risk for isolation and early institutionalization because they are more likely than heterosexual seniors to be childless, single, and living alone. In times of crisis, all of us should have designated people who can care for us and help us access services. But for people with dementia, who become increasingly dependent on others for care, an empowered advocate is essential to accessing and coordinating care and making key medical decisions.
Because LGBT seniors tend to rely on “families of choice”—often composed of loved ones or friends—problems also arise. Friends and loved ones who are not related by blood or marriage often lack legal and institutional recognition. And if blood relatives do interfere, problems can quickly get worse because institutions tend to defer to those relatives over other people.
Some LGBT seniors may also fear discrimination by service providers. LGBT seniors grew up in a time of extreme discrimination and bias. In the 1950s and 1960s, thousands of gay and lesbian federal employees lost their jobs during the “Lavender Scare.” Gay men and lesbians were thought to have severe mental illness and LGBT citizens and their families had no legal protections whatsoever. Many LGBT people were forced into mental institutions or subjected to conversion therapy in an attempt to “cure” them. By the time the AIDS epidemic hit in the 1980s, the US government persistently ignored the crisis, forcing LGBT people to create their own support networks and services.
Given this historical backdrop, it is no surprise that some LGBT seniors—particularly LGBT seniors of color, who live in poverty, or are otherwise marginalized—fear disclosing their sexual orientation or gender identity to service providers. According to a study by the National Senior Citizens Law Center, NCLR and others, only 22 percent of LGBT respondents said they could be open with facility staff about their sexual orientation or gender identity.
The resulting problems for LGBT seniors are alarming. They may fear that they will be mistreated if service providers or others learn of their sexual orientation or gender identity, and may not even seek care in the first place because of those fears. They may feel uncomfortable having their friends or loved ones visit. They may not be allowed to express their gender identity, or clinicians might wrongly attribute their gender identity issues to dementia or mental health issues. Or previously estranged family members may swoop in, decide that the partner has no legal rights, and ban that partner from visiting or caring for her loved one.
Finally, many service providers are often unprepared to provide LGBT-competent care. Even well-meaning staff can be a problem. NCLR recently assisted a lesbian who was housed in a hospice facility. Because she did not have enough clothes, the facility appropriately filled the gap by providing donated clothes. But they were not clothes she would ever choose to wear—including dresses and flowery shirts. She felt extremely uncomfortable and humiliated wearing the clothes, but she suffered in silence because of her extreme dependence on staff for basic, day-to-day care.
What Providers and Caretakers Can Do to Protect LGBT Seniors
So what can service providers and others do to protect the LGBT population? In addition to being generally aware of LGBT seniors and the issues they face, service providers can:
•Have robust LGBT nondiscrimination policies that are aggressively enforced, including policies that specifically allow same-sex couples to share rooms or otherwise live together.
•Arrange staff training about LGBT senior issues (Openhouse, Spectrum, and the National Resource Center on LGBT Aging are just a few organizations that provide this).
•Avoid assumptions about patients’ sexual orientations, gender identities, or families when interacting with all patients and loved ones.
•Ensure that intake forms, marketing materials, and other written materials are LGBT-inclusive.
•Actively recruit openly LGBT staff, administrators and board members.
•Respect patients’ gender identities, pronouns, and names and ensure that all staff do this as well.
•Have LGBT-friendly posters and pictures on websites, in marketing materials, in facilities, in intake areas, or wherever services are provided.
•Reach out to other providers with experience with transgender patients when specific medical or other issues arise (e.g. the Transgender clinic of Tom Waddell Health Center).
•Train medical and mental health staff not to dismiss gender identity issues as symptoms of dementia or other conditions.
•Be vigilant about potential abuse by family members or others. If you see someone at risk, direct patients and partners to essential legal forms. If serious issues arise, call NCLR or other legal groups for advice about protecting patients and their partners.
While the suggestions listed above are targeted to LGBT seniors, they represent universal notions of caretaking and treatment that should apply to everyone. Each of us deserves to live and age with dignity, respect, and understanding.
Amy Whelan is a Senior Staff Attorney at the National Center for Lesbian Rights (NCLR).