Gay, Lesbian, Bisexual, and Transgender Aging: Challenges in Research, Practice, and Policy

2 Informal Caregiving in the LGBT Communities

karen i. fredriksen-goldsen, ph.d., m.s.w. Equity in health is critical to society given its ethical and social justice implications . Despite tremendous advancements in medicine and improved health for many Americans, historically disadvantaged communities continue to bear higher levels of illness, disability, and premature death. The National Institutes of Health (2010) affirm a commitment to “reducing health disparities impacting racial and ethnic minority populations and other disadvantaged populations across the nation.” Although lesbian, gay male, bisexual, and transgender (LGTB) persons encounter social inequalities, such as discrimination, that result in health disparities, sexual orientation and gender identity have largely been neglected as potential risk factors in the public and scientific discourse (Fredriksen-Goldsen, Hyun-Jun, Muraco, & Mincer, 2009; Fredriksen-Goldsen & Muraco, 2010; Institute of Medicine [IOM], 2011; Thompson, 2008). In addition to these factors, aging also affects health in critical ways. When we juxtapose sexual orientation and gender identity with differences in health by aging, we find multiple challenges lacking any targeted response from the health care and elder care professions. The acronym LGBT will be used here to refer to those who self-identify as lesbian, gay, bisexual, or transgender. In most contexts, differing amounts of Informal Caregiving in the LGBT Communities c h a p t e r t w o 60 g a y , l e s b i a n , b i s e x u a l , a n d t r a n s g e n d e r a g i n g research have been conducted with these subpopulations (Fredriksen-Goldsen, Kim, & Goldsen, 2011; IOM, 2011). The available data regarding caregiving, for example, have generally been collected from research participants who selfidentify as lesbians or gay men. Nonetheless, LGBT will be used for inclusiveness and to maintain awareness of the need for further research on behalf of each of these underrepresented groups. Existing research suggests that health disparities exist across a variety of indicators , reflecting differences in access to health care, the prevalence of disease, and health outcomes. For example, certain segments of LGBT communities have been found to be at higher risk of financial barriers to care, victimization, smoking, obesity, suicide, alcohol and drug use, and infection with HIV/AIDS (Fredriksen-Goldsen et al., 2011; IOM, 2011). A study using area probability sampling found that, in one major urban area, lesbian and bisexual women, as compared with heterosexual women, had more limited access to health care and used fewer health screening services (Bowen et al., 2004). However, these differences did not exist across all indicators. For example, the two groups did not differ significantly in smoking rates, fat intake, or mammography screenings. More recent research illustrates differences in health indicators and health-related quality of life among lesbian and bisexual women, demonstrating the heterogeneity of the LGBT community (Fredriksen-Goldsen, Hyun-Jun, Barkan, Balsam, & Mincer, 2010). Disparities in health care often result from differences in access, coverage, and quality of care and may increase reliance on informal caregivers to meet healthrelated needs. Within most medical and social services, the needs of LGBT elders are largely unmet. For example, Feldman and Bockting (2003) report that as many as 30% to 40% of transgender persons in the United States do not have a regular physician and often rely on emergency room and urgent care physicians for immediate health care needs. Fredriksen-Goldsen et al. (2011) found that 22% of transgender older adults needed to see a doctor but could not because of cost. Anecdotal evidence, along with studies of Witten and Eyler (discussed in the chapter 6, “Transgender and Aging”), point to many potential reasons for this lack of primary care. Caregiving is a critical aging concern, influenced by health disparities that affect LGBT elders. In this chapter, I will explore the confluence of sexual orientation and gender identity as they intersect with aging and the changing nature of caregiving supports. I will also examine the prevalence of caregiving responsibilities and explore the unique structural issues that may impact caregiving in these communities. Factors that place these caregivers and those that receive I n f o r m a l C a r e g i v i n g i n t h e L G B T C o m m u n i t i e s 61 care at risk for negative outcomes, as well as protective factors that may assist them in meeting...