Embracing Diversity in Care: Caregiving and the LGBTQ+ Community (Part 1)

In honor of Pride Month, Trualta sat down with Michele Giordano, an executive at SAGE, the world’s oldest organization dedicated to advocacy, services, and innovations to ensure lesbian, gay, bisexual, transgender, and queer and/or questioning (LGBTQ+) elders everywhere age with the dignity and respect they deserve. In this two-part blog series, Michele discusses with Trualta the unique challenges LGBTQ+ caregivers may face, and the innovative work SAGE is doing to help these caregivers.

Please introduce yourself and tell us a little about what you do for SAGE.

I am the Executive Director of SAGEVenture, the social enterprise division of SAGE that oversees SAGECare. My responsibilities include launching innovative products and services and ensuring that SAGECare’s LGBTQ+ credentialing training grows nationally.  I am devoted to creating awareness and services for older LGBTQ+ people across business sectors.

Can you provide some background on SAGE?

SAGE is the world’s oldest organization dedicated to advocacy, services, and innovations to ensure lesbian, gay, bisexual, transgender, and queer and/or questioning (LGBTQ+) elders everywhere age with the dignity and respect they deserve.

Founded in 1978, SAGE offers supportive services and consumer resources to LGBTQ+ older people and their caregivers and advocates for public policy changes. The organization also provides education and technical assistance for aging providers and LGBTQ+ community organizations through its National Resource Center on LGBTQ+ Aging and cultural competency training through SAGECare. SAGE is headquartered in New York City with collaborative partnerships across the United States and globally.

Over the past year, SAGE has launched two new divisions — SAGEServes and SAGEVenture, which are dramatically scaling SAGE’s impact on LGBTQ+ older people everywhere, especially those who have been historically marginalized. SAGEServes and SAGEVenture position SAGE for exponential growth with more programs and services to help vastly expand reach with freshly imagined ways to celebrate and support the LGBTQ+ older adult community.

Our 2023 Annual Report dives deeper into SAGE’s impact on the LGBTQ+ older adult community over the past year.

Trualta’s mission is to support and educate family caregivers. Can you please tell us about caregiving and the LGBTQ+ community?

LGBTQ+ caregivers face unique obstacles, from healthcare laws that privilege biological families to a lack of resources for LGBTQ+-specific needs. Because LGBTQ+ people are twice as likely to age alone and four times less likely to have children, LGBTQ+ elders become caregivers more often than their heterosexual counterparts.

According to SAGE’s Caregiving Guide, LGBTQ+ caregivers make up 9% of the 34.2 million Americans caring for adults over 50, an estimated 3 million people. LGBTQ+ people also become caregivers at a slightly higher rate than their non-LGBT peers. According to recent data, one in five LGBTQ+ people are providing care for another adult, compared to one in six non-LGBTQ+ people. LGBTQ caregivers come from a variety of different backgrounds and provide care in a variety of different relationship structures. Still, there are some common themes in the unique needs and experiences of most LGBTQ+ caregivers.

For instance, most caregivers (85%) care for a parent, spouse, or relative. Looking at the statistics in reverse, we see that older adults typically turn to a child, spouse, or other relative for assistance when they need care. However, LGBTQ+ older adults are four times less likely to have children and twice as likely to be single as their non-LGBT peers, per SAGE’s Facts on LGBTQ+ Aging. They may also be estranged from their biological or legal family members if those people do not accept their sexual orientation and/or gender identity.

With an absence of people to rely on from their families of origin, many LGBTQ+ individuals create “families of choice,” which are typically made up of friends, partners, ex-partners, and perhaps a few relatives. As LGBTQ+ people age, they may turn to their family of choice for their social, physical, and emotional well-being. The majority of an LGBTQ+ older adult’s close friends and chosen family are older adults themselves, so many older people within the LGBTQ+ community rely on one another for caregiving. As a result, a large number of LGBTQ+ older adults find themselves becoming caregivers.

In this context, LGBTQ+ caregivers face many challenges. As previously stated, families of choice are the cornerstone of caregiving for LGBTQ+ older people and provide social, emotional, and physical support. Families of choice often serve as advocates when medical needs arise. However, individuals who make up an LGBTQ+ older adult’s family of choice are not afforded legal recognition or protection, making it very challenging for them to get the care they need.

In addition, LGBTQ+ older adults are five times less likely to seek medical care or social services than the general public. While alarming, this statistic is understandable when considering that older LGBTQ+ people have endured decades of stigma and harassment from healthcare and service providers. Avoiding medical care can put LGBTQ+ older adults at risk of adverse health and mental health outcomes. 

Furthermore, due to mistrust toward providers, many LGBTQ+ caregivers and the individuals they care for choose to keep their identities a secret due to the fear of being unwelcome. As a result, caregivers may be reluctant to share the nature of their relationship, either to protect their loved one from being outed or for fear of being dismissed from their loved one’s care team. This lack of transparency can invalidate the caregiver’s identity and severely impact providing comprehensive care and services.

LGBTQ+ older adults are also less likely to be financially ready for life after retirement. According to SAGE’s Facts on LGBTQ+ Aging, one-third of LGBTQ+ older adults live at or below 200% of the federal poverty level. These financial barriers can make it difficult for LGBTQ+ older adults to coordinate and afford additional support and resources, which increases their reliance on loved ones. This reliance can lead to caregiver burnout, which is a significant challenge within the LGBTQ+ older adult community. It’s essential to recognize that all caregivers are susceptible to caregiver burnout, but LGBTQ+ caregivers are more likely to experience some additional factors that can increase caregiver burden and lead them to burn out more quickly.

As LGBTQ+ adults age, they can also seek assistance from a long-term care community to get additional support as they age. However, many LGBTQ+ older adults feel unsafe being themselves when they seek the care they need. When surveyed, nine out of 10 LGBTQ+ people feared discrimination in care settings if providers knew their sexual orientation or gender identity. This is partly due to the lack of federal protections for LGBTQ+ identities and fear they will face discrimination in long-term care settings.

Please read part two of this blog here.