The Psychosocial Experiences of African American Sexual and Gender Minority Caregivers of People with Dementia

Over 50 million people in the United States provide unpaid care to a family member or friend. One-third of these caregivers (16 million) provide care to someone with Alzheimer’s disease and related dementias (ADRD). Of these caregivers, more than 20% state caregiving has led to a decline in their health. African American caregivers are less likely to report being in very good or better health than their white caregiving peers. Similarly, lesbian, gay, bisexual, transgender, and/or queer (LGBTQ) caregivers are more likely to report fair or poor health than their heterosexual, cisgender peers. The overlap of these minoritized identities may increase the risk of poor health for African American LGBTQ caregivers. The purpose of this study was (1) to characterize psychosocial measures related to environmental, psychological, social, behavioral, and health factors among African American LGBTQ caregivers providing care for people with ADRD; and (2) to determine the effects of care recipients’ and caregivers’ characteristics on family quality of life, caregiver stigma, self-efficacy for surrogate decision making, and mood/depressive symptoms among African American LGBTQ caregivers compared with African American heterosexual caregivers of people with ADRD. Data for this study came from the LGBT Caregiving Study and the Family Quality of Life in Dementia Study. Descriptive statistics for the combined sample were calculated, including means and standard deviations for continuous variables and frequencies and percentages for categorical variables. African American caregivers who identified as queer reported significantly more experiences of lifetime discrimination (p = 0.005) and lifetime victimization (p = 0.007). African American caregivers who identified as gay reported significantly higher levels of stigma. Multiple linear regression analyses were conducted to examine the influence of sexual orientation, caregiver stigma, age, income, education, and relationship to the care recipient on family quality of life and self-efficacy for surrogate decision making. Binary logistic regression was used to assess the impact of sexual orientation, caregiver stigma, age, income, education, and relationship to the care recipient on the likelihood of being depressed. Age was the only significant predictor of family quality of life, self-efficacy for surrogate decision making, and depression scores in this sample. This is the first study to report the psychosocial experiences of African American LGBTQ caregivers of people with ADRD and compare these with their African American heterosexual caregiving peers. Findings from this dissertation support the need for the development of targeted interventions for African American LGBTQ caregivers of people with ADRD.