Caregiving in the LGBTQ Community
Caregiving in the LGBTQ Community
As Baby Boomers continue to grow older, how we care for them has become an important area of conversation. In order to understand how to best address the needs of the Stonewall generation, it’s imperative to consider the unique challenges faced by LGBTQ caregivers and their loved ones. Providing unpaid care for chronically and terminally ill adults is far more common among LGBTQ individuals than it is for cisgender and heterosexual adults. A study on caregiving outcomes and gender identity determined that one out of every six adults in the U.S. is an unpaid caregiver while one out of three LGBTQ adults fulfills the same role.1
Not only does the LGBTQ community experience discrimination and social stigma, they also face institutionalized discrimination from healthcare facilities and social services including, for example, insurers or providers. This can create greater barriers to accessing the medical and social services they need than their non-LGBTQ peers. Additionally, for LGBTQ and HIV-positive individuals that live in rural areas, work inflexible jobs, or are low-income face more challenges with finding a provider that will respect and examine them. One provider who compassionately treats LGBT individuals has reported that some of his patients travel over 500 miles to receive routine care from him.2
As a response to blatant discrimination and the fear and stigma surrounding HIV/AIDS among public and healthcare workers, LGBTQ people banded together during the HIV/AIDS crisis throughout the 80s and 90s to cultivate a culture of mutual caregiving within the their community that continues today.
Families of Choice Definition
It’s not uncommon for LGBTQ people to cut ties with or distance themselves from their biological families in response to being shunned or disowned for their sexuality or gender identity. This has caused the LGBTQ community to build their own families of choice which are often circles of friends from the same age group and who share similar life experiences.
It's common for caregivers, such as spouses and adult children, to provide most of the care to older adults. However, with the LGBTQ community, older adults are twice as likely to be single and living alone and three to four times less likely to have children.3 Therefore, a family of choice is typically relied on to fulfill caregiving duties and provide support.4
LGBTQ Caregiving Challenges
In the early years of the AIDS crisis, many partners and families of choice of the patients were ignored by providers, denied access to hospital visits, and denied roles in medical decision making. Now, many professional associations within the medical community are implementing policies that support equal rights for same-sex partners and LGBTQ parents such as the CARE Act (Caregiver Advise, Record, and Enable) which requires hospitals to ask patients at admission whether they’d like to designate a caregiver.5
However, there are still instances where same-sex partners and non-biological/non-adoptive parents are ignored and denied visitation rights. In 2020, the Trump Administration finalized a rule that redefines what counts as sex discrimination in healthcare and health insurance settings which strongly affects transgender people. Under this rule, a transgender person could be refused care for a checkup at a doctor's office.6 With the possibility of discrimination from facilities and providers, LGBTQ individuals are five times less likely to seek medical care or social services than the general public.7 By avoiding medical care, they are often at higher risk for negative affects to their physical and mental health.
LGBTQ older adults also face higher chances of poverty and economic insecurity. One-third of LGBTQ older adults ages 65 and older are living at or below the federal poverty level compared to a quarter of heterosexual older adults.8 Impacts of economic insecurity also include negative effects on health due to the inability to access needed medication and resources.
Finally, LGBTQ older adults are less likely to have children and are more likely to be single compared to heterosexual older adults. This, in addition to that fact that LGBTQ people may be disconnected from their biological family, can put them at an increased risk of isolation. In many instances, this leads to solo caregiving which means the person receiving care lacks a safety net if something were to happen to their primary caregiver. Additionally, the solo, LGBTQ caregiver may face their own challenges as a result of their gender identity and sexuality that could potentially bring harm to both themselves and the person receiving care.
Support for the LGBTQ Community
Here are some recommendations for finding comfort and support in your community as an LGBTQ caregiver:
- Look up social events that are geared toward LGBTQ seniors or multigenerational activities such as film festivals and neighborhood fairs. There may be local cafes and bookstores that are known in the LGBTQ community where people gather and connect. Invite friends and family to these events so you can make memories together and they can better understand the interests and community that make you who you are.
- With the COVID-19 pandemic, take advantage of virtual events relating to hobbies that you may be interested in. Almost every activity has a subset of LGBTQ enthusiasts that are online and interested in the same things as you.
- LGBTQ and caregiving support groups can be very helpful in finding others that have experienced similar challenges and may be able to provide you emotional support.
- Caregiving comes with a lot of stress and can lead to burnout. While attending programs that are educational and social can be helpful, consider trying programs that are focused on self care. Whether that be yoga, meditation, a relaxation class, or a walk through nature, programs that teach you long-term skills and mental strategies that help you relax are crucial to your time as a caregiver.
While caregiver well being continues to be made a priority by all of our complex systems, it’s important to recognize that not all caregiving experiences are the same. LGBTQ caregivers face many unique challenges due to the fact that they may rely on families of choice for their personal care and caregiving support. In addition to having difficulty in finding resources that reflect their gender identities and experiences, LGBTQ caregivers are often dealing with caregiver burden and stress in isolation.
Due to unique family structures, LGBTQ people may not even recognize that they are caregivers and may be fearful of seeking support due to the possibility of being treated poorly or facing discrimination. It’s essential that providers create an inclusive programming structure that incorporates LGBTQ caregiver voices and understands their unique needs. With improved recognition of the LGBTQ community and its distinctive needs, organizations can become better equipped to attend to the needs of LGBTQ caregivers.
- Differences in Caregiving Outcomes and Experiences by Sexual Orientation and Gender Identity, LGBT Health (2011)
- Patients: Reluctant and Underserved, American Medical News (2011)
- Legacy Giving and Facts on LGBT Aging Infographics, SAGE (2018)
- “That’s what friends do”: Informal caregiving for chronically ill midlife and older lesbian, gay, and bisexual adults, Journal of Social and Personal Relationships (2011)
- State Law to Help Family Caregivers, AARP (2014)
- Transgender Health Protections Reversed By Trump Administration, NPR (2020)
- Funders for Lesbian and Gay Issues, Funders for LGBTQ Issues (2004)
- 51 Years Since Stonewall – Health, Poverty, Housing Hurdles Still Plague LGBTQ 50+ NYers; Worse Since COVID: First of its Kind Report, AARP (2021)
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