Every November, National Family Caregivers Month honors caregivers and raises awareness around caregiving issues. It’s an opportunity to draw attention to the often underdiscussed, underrecognized work of family caregiving — which the AARP estimates represents more than $600 billion in uncompensated economic value a year. Caregivers provide care and support to their families — both biological and “chosen” families — who tend to be older adults and have multiple health and functional needs. And like families themselves, caregivers are diverse, spanning all ages, geographies, races, and ethnicities.
The diversity of family caregivers is an important consideration to ensure their specific needs are being met. Family caregivers are also diverse in their sexual orientation and gender identity. Recent work conducted by the Center for Health Care Strategies, through support from The John A. Hartford Foundation, underscored the unique challenges faced by lesbian, gay, bisexual, transgender, queer, and additional sexual and gender identities (LGBTQ+) caregivers.
There are multiple, intersecting barriers for LGBTQ+ caregivers that make providing care difficult — but there are also emerging practices and policy solutions that can more equitably support them, benefit their well-being, and improve the lives of their loved ones.
Family caregiving is important, difficult work. It can be even more difficult for LGBTQ+ caregivers. Beyond the stressful responsibilities that come with the work itself, LGBTQ+ caregivers often face additional challenges related not only to their sexual orientation and gender identities, but also to their race/ethnicity, language, religion, age, location, and disability status. This overlap of social identities and experiences — known as intersectionality — deeply affects LGBTQ+ caregivers’ lives both as caregivers and as people. LGBTQ+ caregivers’ experiences with ageism, racism, and lack of resources due to their geographic locations can lead to exclusion from policies and programs, discrimination, and a lack of culturally competent services and supports.
- Ageism: Much of today’s LGBTQ+ advocacy and awareness efforts focus on supporting youth and younger adults – unintentionally leaving out aging supports for LGBTQ+ older adults and their caregivers. LGBTQ+ older adults are often more private about their sexual orientation and/or gender identities, which may also contribute to their needs as caregivers being overlooked.
- Cultural norms and racism. LGBTQ+ caregivers who are Black or from other communities of color have different needs that are often not acknowledged. For example, LGBTQ+ caregivers of color may deal with discrimination from their cultures of origin. Black people face increased barriers when seeking care — sometimes due to past discriminatory experiences with providers. This experience, combined with a fear of homophobia or transphobia, can exacerbate health inequities impacting the overall wellbeing of both the caregiver and care recipient. The field needs additional research to more fully understand the different experiences Black and other caregivers of color have within the LGBTQ+ community.
- Geographic location: Older LGBTQ+ people in rural areas are less likely to be open about their sexual orientation and gender identity, and are also disadvantaged by a lack of resources, like respite, transportation, and support groups. Respondents to a report from the University of Minnesota’s Rural Health Research Center noted lack of cultural competency and unaccepting attitudes among providers as top concerns alongside a general lack of health care resources, which can make it difficult for LGBTQ+ caregivers and their care recipients to seek and access care.
Policy Change to Better Support LGBTQ+ Caregivers
As providers, policymakers, and other stakeholders aim to better support LGBTQ+ caregivers, embracing a holistic, intersectional approach to policy and program design is crucial. Below are some high-level strategies for supporting LGBTQ+ caregivers with special attention to their other identities. Check out this fact sheet for more details.
- Leverage LGBTQ+ spaces to address ageism. As mentioned earlier, LGBTQ+ advocacy is typically focused on supporting youth. LGBTQ+ community centers have an opportunity to lead by offering services and resources specifically designed for LGBTQ+ older adults and their caregivers, such as monthly support groups, companionship programs, and activities that help strengthen care circles. Just as caregiving and aging-focused programs have started incorporating LGBTQ+ cultural competency trainings, LGBTQ+ community centers can also consider incorporating trainings on aging and ageism.
- Train providers. LGBTQ+ caregivers have unique needs, experiences, and preferences. Offering training opportunities for health care providers could help strengthen their understanding of those needs. For example, SAGECare provides cultural competency trainings for providers to better support the LGBTQ+ community and their caregivers. These trainings cover topics like identifying and supporting caregivers in the LGBTQ+ community and asking inclusive demographic questions. SAGECare credentials also help LGBTQ+ people find providers who are specifically trained to meet their unique needs.
- Collect sexual orientation and gender identity (SOGI) data. SOGI data collection can help providers identify LGBTQ+ caregivers, better understand their health needs, and connect them to culturally competent services. It is important that this information be kept confidential and the purpose for collecting this data should be made clear to avoid any unintended discrimination, especially where the LGBTQ+ community is less accepted. Since there has been slow uptake in collecting SOGI data among health care providers, it would be helpful to have this information collected from different sources, like state agencies or community-based organizations, to increase responses. Efforts to increase SOGI data collection should happen alongside training to ensure staff comfort with and knowledge on appropriately collecting, storing, and analyzing SOGI data.
As we celebrate and uplift family caregivers this month, it is important to consider the unique needs of LGBTQ+ caregivers, focus on how other identities intersect with their sexual orientation and gender identities, and ultimately affect the care they provide their families and loved ones.
Stakeholders can start with some of the changes mentioned above and in this fact sheet, but don’t stop there — continue to listen to community members and invite them into the room when developing new approaches. By listening to LGBTQ+ caregivers and their care recipients, you’ll learn not only how to serve them better, but how to approach the multiple, intersecting identities and needs of all.