Caregiving Experiences and Health of LGBTQ+ Caregivers: Results from the Equality in Caregiving Study

Abstract

AbstractBackgroundBetween 27% and 45+% of LGBTQ+ adults care for someone with a chronic illness, with 11% caring for someone living with Alzheimer’s disease and related dementias (ADRD). LGBTQ+ caregivers may experience greater strain than non‐LGBTQ+ caregivers, but differences in characteristics and experiences between LGBTQ+ ADRD and non‐ADRD caregivers are less understood.MethodsAn online survey of demographic characteristics, caregiving experiences, and health‐related questions was administered to LGBTQ+ ADRD (n = 25) and non‐ADRD (n = 24) caregivers recruited from across the U.S. as a part of a larger clinical trial. Descriptive statistics were used to characterize the sample. Non‐parametric tests were used to assess differences between LGBTQ+ ADRD and non‐ADRD caregivers.ResultsCaregivers identified as lesbian (31%), gay (29%), bisexual (18%), queer (8%), heterosexual (6%), and additional identities (8%). Most identified as cisgender female (34%) or male (24%), followed by transgender (16%) and genderqueer, non‐binary, or gender fluid (10%). Respondents were aged 18‐81 (48.42 ± 16.46 years). The majority identified as White (71.4%), had an average of 16.65 years of education (SD = 2.48), and were a child/grandchild (55.1%) or other relative (28.6%) of the person with ADRD. Most had been providing care for 3 to 4 years (37.5%) or 5 to 10 years (25%). ADRD caregivers provided help with slightly more IADLs (7.2 vs. 7.0) and ADLs (6 vs. 5.3) than non‐ADRD caregivers (non‐significant, n.s.). ADRD caregivers reported slightly higher levels of perceived stress (mean: 17.9 vs. 17.6, n.s.) than non‐ADRD caregivers. ADRD caregivers reported a slightly higher score for positive aspects of caregiving (mean: 27.5 vs. 27.0) than non‐ADRD caregivers. ADRD caregivers were more likely to report being asked by a health care provider about needing help with caring for their care recipient than non‐ADRD caregivers (18.0% vs. 10.0%; p = .02).ConclusionLGBTQ+ ADRD and non‐ADRD caregivers were similar across experiences of positive aspects of caregiving and perceived stress. ADRD caregivers were more frequently asked by a health care provider about needing help in providing care compared with non‐ADRD caregivers. More research is needed to understand the experiences and needs of LGBTQ+ ADRD caregivers, particularly in more racially and ethnically diverse communities.