Editor’s Note: This article represents the third in a series by the Diverse Elders Coalition (DEC) to be published in Generations Today. Articles are connected to ASA-hosted webinars; see end of article to register. The series of articles by the DEC highlights research from The Caregiving Initiative, a multiyear research project funded by The John A. Hartford Foundation.
For many LGBT caregivers, 2020 was particularly difficult. Already saddled with discriminatory policies advanced by the previous presidential administration, LGBT caregivers and their older loved ones often were deterred from seeking care during the COVID-19 pandemic due to fears of discrimination. This harsh reality built upon pre-pandemic challenges for LGBT caregivers documented through findings from our 2019 national caregiving survey. The pandemic has only worsened preexisting health inequities within the LGBT caregiving community.
Who Are LGBT Caregivers?
Data from our survey indicates that LGBT caregivers are older (ages 59 and older) and more likely to be born in the United States. Although a half of LGBT caregivers indicated living with care receivers, they are less likely to be married. This is consistent with findings from a report released by SAGE, “Caregiving in the LGBT Community,” which elaborates on the importance of family of choice for LGBT older adults.
For reasons of historical discrimination, LGBT caregivers or older adults may be estranged from their biological family, and have to rely upon their peers for care. LGBT caregivers may be older adults themselves, facing their own challenges with aging.
Cultural Impacts on Caregiving
There are many obstacles that make it difficult for LGBT caregivers to effectively provide care for their loved ones. LGBT caregivers may not be formally recognized as caregivers by healthcare providers, leaving them out of critical discussions. More than a quarter of LGBT caregivers are not known to the healthcare professionals providing care to their loved ones, nor are they allowed in the room with care recipients.
Almost half (44.6 percent) of LGBT caregivers reported being the only person available to provide care for their loved ones. Being the sole caregiver may correlate with negative financial consequences.
The Need for Accessible, Affordable, Culturally Competent Healthcare Services
It is crucial that policy makers and advocates push for more protective polices and the elimination of discriminatory policies that make it more difficult for LGBT caregivers to provide care. Our survey data revealed that about half (45.9 percent) of LGBT caregivers report worsened emotional health as a result of the difficulties in carrying out their caregiving responsibilities; and 18.9 percent of these caregivers experienced an increase in depressive symptoms.
For many LGBT caregivers, COVID-19 has triggered traumatic memories of the earlier HIV/AIDS pandemic experience and loss.
LGBT caregivers also face physical strain, with a fifth of caregivers reporting worsening physical health. These burdens are exacerbated by the lack of formal and informal support. As with LGBT older adults,
LGBT caregivers often avoid accessing services and care based on fears of discrimination. It is not surprising to find that LGBT caregivers have only used an average of 1.8 supportive services (respite, paid helper, etc.) in the past six months.
“There is too much pressure. It is incredible that there is no care for the caregivers like me. The doctor couldn’t refer me to anything. I just left my job,” said one caregiver in a SAGE Bronx Focus Group.
More than 1 in 5 (21 percent) LGBT caregivers reported zero family, friends or neighbors who assisted or supported them.
Implications of COVID-19
Although data about the experiences of LGBT caregivers and older adults during COVID-19 is limited, anecdotal evidence strongly indicates that the pandemic has only exacerbated pre-existing strains on LGBT caregivers. Many LGBT caregivers and the older adults for whom they care had already lived through and suffered tremendous losses as a result of the HIV/AIDS pandemic.
For many such caregivers, COVID-19 has triggered traumatic memories of that earlier pandemic experience and loss. Unfortunately, rather than finding help to address this challenging reality, LGBT caregivers have been isolated from support. Even before the pandemic, our survey data revealed that almost 4 in 10 (37.7 percent) LGBT caregivers reported being more isolated due to caregiving.
During the pandemic, the health and well-being of LGBT caregivers and their loved ones likely has worsened due to exacerbation of preexisting barriers. Before the pandemic, more than half (63.2 percent) of LGBT caregivers reported some or a great deal of difficulty with healthcare tasks such as coordinating or arranging for care or services from doctors, nurses and social workers. Additionally, more than a third (43.5 percent) of LGBT caregivers reported some or a great deal of difficulty with other healthcare tasks such as taking medications or caring for wounds.
It is important to note that the LGBT caregiver community is not homogeneous. The impact of COVID-19 has fallen harder on LGBT caregivers and older adults who are BIPOC (Black, indigenous, or people of color), in light of the fact that COVID cases and deaths have been concentrated disproportionately in Black and brown communities. In addition, anti-Asian hatred and violence has risen rapidly as a result of race-baiting in response to COVID-19, making the experiences of LGBT caregivers and older adults who are AAPI that much more difficult.
Best Practices to Support LGBT Caregivers
The following are some best practices from our cultural competency training curriculum to better support LGBT caregivers:
- Collect information on gender identity and sexual orientation data on intake and other forms to better understand the needs of caregivers and care recipients;
- Encourage and support additional research on the experiences, needs and resiliencies of LGBT caregivers;
- Create welcoming, supportive and safe environments for LGBT caregivers and older adults;
- Respect and recognize the important roles that LGBT caregivers play and ensure that they are fully integrated into the care of their loved ones;
- Create and provide culturally competent resources that are designed to address the particular needs of LGBT caregivers and older adults; and
- Ensure that all organizations’ nondiscrimination policies include sexual orientation and gender identity, and that policies involving “family” include chosen families or families of choice.
Michael Adams is the CEO of SAGE in New York City and chairs ASA's Board of Directors. Ocean Le is program coordinator of the DEC, also in New York City.
Download the DEC’s Resources for Providers: Meeting the Needs of Diverse Family Caregivers Toolkit. This toolkit offers topline information on what providers need to know, and key pieces from our comprehensive training curriculum, Caring For Those Who Care: Meeting the Needs of Diverse Family Caregivers. Whether you have already attended one or more of our trainings, or this is your first time looking into what’s available to help you support diverse family caregivers, we think you’ll find these resources to be invaluable in building a more welcoming, supportive practice.
Photo Caption: LGBT caregiver reaches out to care receiver.