Profile of the Informal LGBT Caregiver: A Comparison of LGBT and Non-LGBT Informal Caregivers in the US

Background/Purpose:  Caregiving has been characterized as a difficult but rewarding experience.  Research on caregiving describes informal caregivers as being susceptible to caregiver burden, including experiencing  a limited/impaired ability to function spiritually, emotionally, socially, physically, and/or financially.  Caregivers who identify as LGBT are noted to encounter these stressors at increased rates when compared to non-caregiving LGBT.  While caregivers in general are noted to suffer from caregiver burden, for LGBT-identified caregivers, the intersectionality of sexual and/or gender identity further impacts the caregiving role due to LGBT-related experiences of victimization, verbal abuse, physical abuse, decreased mental health, decreased physical health, increased likelihood to have a disability and/or financial strain.  Moreover, LGBT caregivers may face additional caregiving-related discrimination that impacts their ability to provide quality care to the care recipient that heterosexual caregivers may not face; discrimination for LGBT caregivers has been found in situations that elicit assistance from healthcare providers, legal institutions, and other agencies/entities from which they may need to secure resources/services necessary to effectively execute their role as caregiver.

Research has clearly defined the profile of the typical caregiver, yet a profile of the LGBT caregiver does not exist.  Additionally, little research has examined caregiver burden among LGBT caregivers. In an effort to further our understanding of the experiences of LGBT-identified caregivers, our study had two primary aims: 1) to compare the demographic profile of LGBT-identified and non-LGBT caregivers, and 2) to examine the relationship between LGBT status and caregiver burden.

Methods: Data for this secondary data analysis comes from the Caregiving in the U.S. 2015 study conducted by the National Alliance for Caregiving and the AARP Public Policy Institute.  The database represents a random sample of 1,445 informal caregivers, with 110 self-identifying as LGBT.

In addition to measures of sexual and gender identity, the data includes an array of variables measuring demographic characteristics and caregiving functions, including but not limited to relationship between caregiver and care recipient, sex, race, age, caregiver burden, caregiving financial-impact, caregiving employment-impact, perception of choice in caregiving, and treatment by care recipient’s healthcare professionals.  Study aims were addressed through bivariate analyses and binary logistic regression.

Results:  LGBT and non-LGBT caregivers were found to differ in a number of ways. Specifically, compared to non-LGBT caregivers, rates of Hispanic and African-American LGBT caregivers were significantly higher, while rates of Asian-American LGBT caregivers were significantly lower. Additionally, LGBT caregivers were observed to begin caregiving at a younger age.   LGBT status was found to impact interactions with care recipient’s healthcare professionals and services that are received such as transportation assistance and respite.

Conclusions and Implications: Our findings represent a change in the way informal caregiving practices in the US can be viewed, as approximately 1 out of 10 informal caregivers identify as LGBT.  LGBT caregivers face unique challenges that the non-LGBT caregiver may not incur, and this must be taken into account as future policies are created to support the informal caregiver.