The cohort of LGBT people currently in later life grew up and moved into adulthood in much less supportive environments than those experienced by younger cohorts. Before entering adulthood, the oldest of this cohort would have seen, in 1952, the creation of an official diagnosis that listed homosexuality as a sociopathic personality disturbance (Bayer, 1987) and watched Senator McCarthy include gay men and lesbians on his blacklist. As adults, this cohort witnessed routine harassment by authorities, as well as the Stonewall Rebellion in 1969 and the American Psychiatric Association’s removal of homosexuality from the Diagnostic and Statistical Manual of Mental Disorders in 1973 (see Chapter 2 for a full historical overview).
For all adults, later life is known as a period of both growth and decline (Baltes et al., 1999), with studies on the latter vastly outnumbering those on the former. Significant research effort has begun focusing on the diseases and disorders that accompany old age and the lifestyles of the elderly, including dementia; the living environments of later life; the need for and delivery of care from both interpersonal and institutional perspectives; the related social, and especially family, relations of older persons; end-of-life preparations; bereavement; and the personal and environmental characteristics of successful aging. These areas of research are certainly not restricted to heterosexual persons; the experiences of aging LGBT persons may be similarly characterized, with the addition of the legacies and experiences of stigma. In fact, studies of aging among LGBT elders will generate new knowledge about aging in general as questions are framed and concepts considered that fall outside of traditional “heteronormative” perspectives.
The committee chose to define the start of later life, while a vague and contested concept, as generally coinciding with retirement. The bulk of the empirical literature on LGBT aging, however, makes reference to a variety of (mostly younger) ages than this traditional cut-off point and is included in the discussion that follows. Ages younger than the traditional retirement age are included in this chapter in the context of preparations for later life, mainly as pertains to the well-known “baby boomer” cohort, the next in line to become seniors. This age issue is part of the recurring pattern noted throughout this report: much of the empirical literature on which the report draws either does not provide an age breakdown or uses a breakdown that does not match the age ranges used to organize the chapters of the report. Thus, the text that follows builds upon, and sometimes includes references to, studies and observations from the preceding chapter on early/middle adulthood. In so doing, it highlights the continuous nature of the life course while at the same time elucidating the particular circumstances of the later years.
In general, LGBT elders have not been the subject of extensive research; a recent publication reviews some of the extant literature and echoes this statement (see Fredriksen-Goldsen and Muraco, 2010). Just as aging is infrequently considered in LGBT research, the field of gerontology has infrequently considered LGBT aging issues (Scherrer, 2009). The studies in this area that have typically been reported have used small and mainly regional samples, often recruited from public venues, such as community centers, street fairs, and pride festivals. The vast majority of studies include self-identified LGBT persons; if studies describe samples of LGBT persons otherwise identified, they are highlighted below. The studies in this area also focus disproportionately on gay men and lesbians; few studies have focused on bisexual or transgender elders. Most studies, moreover, have a high representation of white individuals; very few articles have been written on racial/ethnic minorities. Although many samples include LGBT older persons of color, they are often in proportions insufficient for further analysis; thus, very little is known about these groups. The same is true for other metrics of diversity (such as rural residence, culture, or religion). Finally, almost no published research exists on the very later years of LGBT persons—ages 85 and older.
Given the limited research in this area, this chapter draws significantly on the few large-scale studies that have included older LGBT persons (and those approaching later life). It also includes a variety of more regional studies with less representative and smaller samples, as noted above. When possible, these restricted samples are described within the limiting parameters of the cited studies.
This chapter examines research that has been conducted on the health of LGBT elders and factors that influence their health outcomes. It begins
by describing research on the development of sexual orientation and gender identity in this age group. The next two sections examine first mental health status and then physical health status. The chapter then addresses in turn risk and protective factors; health services; and contextual influences, including demographic characteristics, the role of the family, and end-of-life issues. The final section presents a summary of key findings and research opportunities.
DEVELOPMENT OF SEXUAL ORIENTATION AND GENDER IDENTITY
Although the age at which gay men and lesbians come out appears to be earlier today than in previous cohorts, there remains great variability in the time of coming out and evidence that the process may extend over the life course (Brown et al., 2001; de Vries and Blando, 2004). Grov and colleagues (2006) conducted a cross-sectional street-intercept survey with 2,733 participants at a series of LGB community events in New York City and Los Angeles. Their sample was broken down into five age cohorts, the oldest of which was 55 and older. The authors found that women and men in the youngest cohort (aged 18–24) reported coming out to themselves at younger ages than women and men in the oldest cohort. The average age of coming out to self and coming out to others for the youngest women was 15.88 and 16.87 years, respectively; the average comparable ages for the oldest cohort of women were 24.90 and 27.38, respectively. The average age of coming out to self and coming out to others for the youngest men was 15.01 and 16.94 years, respectively; the average comparable ages for the oldest cohort of men were 20.31 and 24.11, respectively. Uneven and smaller subsamples of racial and ethnic minority LGB persons prevented fuller analyses; however, within-cohort analyses revealed no racial differences in the age at which participants came out to themselves and others.
In the Still Out, Still Aging: The MetLife Study of Lesbian, Gay, Bisexual and Transgender Baby Boomers (MetLife, 2010) national survey of LGBT people aged 45–64 (n = 1,201), the extent to which LGBT respondents reported being out varied significantly. Transgender and bisexual respondents were far less likely to be out: only 39 percent of transgender and just 16 percent of bisexual people were completely or mostly out, compared with 74 percent of gay men and 76 percent of lesbians. The majority of gay men and lesbians reported having completely or very accepting families; for transgender and bisexual respondents, these percentages were lower (42 and 24 percent, respectively). Almost one-third (31 percent) of bisexuals said family members were not very or not at all accepting, a far higher percentage than the next least-accepted subpopulation of transgender people (12 percent).
LGBT respondents were also asked about the extent to which they disclosed their sexual orientation and/or gender identity with a variety of people. Although more than a quarter (29 percent) said they were open with anyone, many reported that they were guarded with some people. For example, 33 percent had not disclosed to their neighbors, and more than 30 percent had not disclosed at work (32 percent for coworkers and 30 percent for supervisors); 20 percent were guarded with their siblings and their parents, while 28 percent were guarded with other family members. There were also other groups of people to whom the participants had not come out—acquaintances (30 percent), people at the place where they attended religious services (16 percent), health care providers (16 percent), and even “closest friends” (12 percent). Bisexual people were less likely to disclose their sexual orientation than the other subpopulations; only 12 percent of bisexual people said they were open with anyone, compared with 30 percent of lesbians, 38 percent of gay men, and 28 percent of transgender respondents (MetLife, 2010).
In his secondary analysis of 372 men aged 50–85 in the Urban Men’s Health Study—a probabilistic sample of men who have sex with men obtained in San Francisco, Los Angeles, Chicago, and New York using a modified random-digit dialing approach—Rawls (2004) found that almost 5 percent of the men in this sample had never told someone they were gay or bisexual; half of the men had not told someone else they were gay or bisexual until after the age of 21 and about one-quarter of the men until after age 26. Considered by current age, the proportion of men who reported that they had disclosed their orientation to many in their social environment significantly decreased over the three age groups in the sample—50–59, 60–69, and 70 and older. Of interest, among the older two groups, there were no significant differences between those with lower and higher levels of disclosure in their experience of distress and depression. This latter finding in particular is reminiscent of results of earlier research, particularly Lee’s (1987) study of older Canadian gay men and Adelman’s (1990) study of a small sample of gay men and lesbians over age 60 in the San Francisco Bay Area. In both of these studies, those with lower disclosure reported greater happiness and life satisfaction, leaving open questions about the time/cohort and/or life-course consequences of coming out.
Transgender persons who are visibly gender role nonconforming in childhood tend to come out at an early age (Bockting and Coleman, 2007). For the older generations, this was typically during adolescence or early adulthood; today’s generation typically comes out in childhood or shortly after the onset of puberty (Möller et al., 2009; Wallien and Cohen-Kettenis, 2008). However, transgender persons who are not visibly gender role non-conforming in childhood typically do not come out until much later in life, during midlife or beyond. This is a particularly common developmen-
tal pathway among transgender women (as opposed to transgender men) (Doctor, 1988; Landen et al., 1998). Some transgender people who were not visibly gender role nonconforming in childhood do retrospectively report cross-gender feelings in childhood, whereas others do not. Most do, however, recall cross-dressing during adolescence. Initially, such cross-dressing is often sexually arousing, and may be restricted to particular articles of clothing (e.g., lingerie) and, possibly, compulsive (i.e., fetishistic). After many years of cross-dressing in private, the main motivation for cross-dressing may shift toward more fully doing so for comfort and, eventually, to express a cross-gender identity. This developmental pathway has been described as late onset (as opposed to early onset [Doorn et al., 1994]), secondary (as opposed to primary [Person and Ovesey, 1974]), marginal (as opposed to nuclear [Buhrich and McConaghy, 1978]), or autogynephilic (as opposed to homosexual) transsexualism1 (Blanchard, 1989).
Thus, according to these typologies, most transsexual men and many transsexual women experience a strong cross-gender identity starting in childhood (primary transsexualism). For many transsexual women, however, the cross-gender identity develops more gradually over the life course and increases in intensity, and after years of compartmentalizing this identity privately, these transsexual women come out during midlife or beyond to transition and pursue hormone therapy and/or surgery to feminize. At a later age, however, hormone therapy is less effective at feminizing, either because it cannot reverse the long-term masculinizing effects of testosterone or because only lower doses of feminizing hormones can be prescribed given the higher prevalence of medical contraindications and chronic disease among older individuals (Dahl et al., 2006). For these individuals, years of being “in the closet” and in effect delaying experiences of felt stigma may have mental health implications, although research comparing the mental health of those who come out early versus later in life has yielded mixed findings (see Lawrence, 2010, for a review). What is clear is that the majority of transsexual individuals who come out later in life benefit from treatment of gender dysphoria and are satisfied with sex reassignment (Lawrence, 2003, 2010).
For transgender people, coming out later in life also means working through developmental events commonly experienced earlier in life, such as a kind of “second adolescence,” first experiences in the other gender role (including dating and sexual experimentation), and exploration of
one’s masculinity or femininity (Bockting and Coleman, 2007). Many who come out later in life are heterosexually married and have a family, whose members face their own process of coming to terms with their loved one’s transgender identity (Emerson, 1996; Lev, 2004).
MENTAL HEALTH STATUS
Some significant literature examines the potential challenges faced by LGBT persons in later life; there have been few empirical studies in this area, however. Some of the many challenges reported include the present and past effects of stigma and discrimination and a greater reliance on nontraditional sources of support, such as friends and other non–family members, in an environment in which such support frequently is not recognized either formally (by policy, for example) or informally (by social organizations and family members, for example) (see Barker, 2002, for a discussion of “friend” caretakers to the elderly in general). Confronting these challenges is believed to tax the mental health of LGBT elders, as discussed below.
It is important to note, however, that LGBT people in later adulthood typically are well adjusted and mentally healthy. Studies using probability samples indicate that the majority of older LGB adults do not report mental health problems (Cochran and Mays, 2006; Herek and Garnets, 2007). While national probability samples of the transgender population are not available, studies based on nonprobability samples similarly show that the same is true for many if not most transgender adults (Clements-Nolle et al., 2001; Nuttbrock et al., 2010).
Limited data are available on mood or anxiety disorders among older LGBT individuals. The reports available in the literature typically are for an adult population undifferentiated by age, obscuring the particular experiences of older adults.
Among older adults in the general population, estimates of the prevalence of major depression range from less than 1 percent to approximately 5 percent, but can reach 13.5 percent for those who require home health care (NIMH, 2007). Compared with these estimates, studies of both older gay men and older lesbians have found elevated levels of depression. Shippy and colleagues (2004) found that 30 percent of a sample of 233 gay men aged 50–87 reported depression. Bradford and colleagues (1993), reporting
on the National Lesbian Health Care Survey of 1,925 self-identified lesbians aged 17–80, found that among the approximately 3 percent of the sample over age 55, 24 percent reported having experienced depression at some point in their lives. Valanis and colleagues (2000), analyzing data from the Women’s Health Initiative (n = 93,311), found that 15–17 percent of lesbians aged 50–79 had been depressed.
In a household probability sample of 2,881 men who have sex with men (analyzed by age decade), Mills and colleagues (2004) found a rate of depression of 17 percent among men aged 50–69 (n = 397) and 5 per cent among men aged 70 and older (n = 41). Not having a domestic partner, a recent history of antigay threats or violence, not identifying as gay, and feeling highly alienated from the gay community were associated with both distress and depression. Based on data gathered from 416 self-identified lesbian, gay, and bisexual adults aged 60–91, Grossman (2006) found that most older LGB adults in the study appeared to have developed some resilience to the minority stress in their lives. However, signs of emotional distress were still present in their lives. For example, 27 percent reported feeling lonely, 10 percent reported sometimes or often considering suicide, and 17 percent still wished they were heterosexual. For 93 percent of participants, having known people who were HIV-positive or had died of AIDS was an additional factor that caused emotional distress.
Several authors have commented that older transgender adults have particularly high rates of depression (e.g., Cook-Daniels and Munson, 2010). Empirical evidence is sparse on this point, however. A recent study by Fredriksen-Goldsen and colleagues (2011) offers some data on this and other points of relevance. The study was based on an 11-site sample with a total of 2,560 self-identified LGBT persons between the ages of 50 and 95 (including 175 transgender persons) recruited through agency lists, respondent-driven sampling, and in-depth interviews. Thirty-one percent of the LGBT persons in this sample were depressed; transgender persons reported significantly higher levels of depression than nontransgender persons, although the exact percentages were not known.
The National Institute of Mental Health (NIMH, 2007) identified a national average of 11 suicides per 100,000 in the general population; persons over age 65 died by suicide at a rate of 14.7 per 100,000. From another perspective, the proportion of older adults in the United States is about 12 percent, but the elderly account for 18 percent of the nation’s suicides (Statewide Office of Suicide Prevention, 2009). These statistics differ dramatically by gender: men die by suicide at a rate five times that among women.
Even against this backdrop, the lifetime risk of suicide attempts appears particularly high among gay and bisexual men, as reported in a metareview by King and colleagues (2008), although this analysis had no age-specific focus. Others have reported an elevated risk of suicide attempts and suicidality in samples including older gay men and lesbians. For example, Paul and colleagues (2002) examined suicidality by age cohort using data from the Urban Men’s Health Study—a household probability sample of 2,881 men who have sex with men in four major U.S. cities, 14 percent of whom were age 25 in 1970 (meaning they were 55 in 2000). The authors found that 12 percent of this group had attempted suicide (equivalent to the percentage in all other age cohorts), with the mean age of first attempt being 37.4 years (one-quarter of men in this cohort who had attempted suicide had done so before age 25).
In a study using the previously described data set of 416 self-identified lesbian, gay, and bisexual adults aged 60–91, D’Augelli and Grossman (2001) found that 13 percent of their sample had attempted suicide (an attempt was especially likely among those who had been victimized at some point in their lives, as described further below). Among the study participants, better mental health was correlated with higher self-esteem, less loneliness, and lower internalized homophobia. Compared with women, men reported significantly more internalized homophobia, alcohol abuse, and suicidality related to their sexual orientation. Less lifetime suicidal ideation was associated with lower internalized homophobia, less loneliness, and more people knowing about participants’ sexual orientation (D’Augelli and Grossman, 2001).
Although some studies examining suicidal ideation and attempts among transgender adults include individuals in later adulthood, these studies typically do not provide analyses of their data according to the age of participants. Therefore, it is difficult to identify findings that are specifically pertinent to transgender individuals in later adulthood. These studies are discussed in the previous chapter on early/middle adulthood.
As noted frequently throughout this chapter, research on LGBT elders is sparse, an observation that is apparent in this section. It is also important to note that much of what is known about suicide attempts or ideation is for “any time in the lives” of these persons as currently assessed. Many of these behaviors and thoughts may well have occurred in much earlier years and thus are not related to experiences in later life (and perhaps even intimate particular resilience among older, surviving adults).
Transgender-Specific Mental Health Status
Studies on the mental health of transgender people include participants in later life, yet data for this age group typically are not presented
separately. One recent study, however, does provide some insight into the mental health of older transgender individuals. While this study encompasses midlife participants, its focus on older in comparison with younger adults makes its inclusion appropriate. Nuttbrock and colleagues (2010) conducted Life Chart Interviews with a convenience sample of 571 transgender women in New York City and compared data from older (aged 40–59, n = 238) and younger (aged 19–39, n = 333) participants. Two-thirds (66.3 percent) of the older as opposed to 84.1 percent of the younger participants reported coming out in one or more interpersonal contexts (family, friends, work, school). Lifetime prevalence of depression was 52.4 percent for the older group and 54.7 percent for the younger group. Among the older group, 35.5 percent reported depression during two or more life stages (early adolescence, late adolescence, early/young adulthood, early middle age, later middle age); depression was high during early adolescence (23.5 percent) and remained relatively constant into early (24.8 percent) and later (26.1 percent) middle age. This pattern differed from that of the younger group, in whom depression was extremely high during early adolescence (38.4 percent) but then declined significantly into early middle age (19.1 percent). Lifetime prevalence of suicidal ideation, planning, and attempts among the older group was 53.5 percent, 34.9 percent, and 28.0 percent, respectively; 6.7 percent reported suicide attempts during two or more life stages. For both the older and younger groups, gender-related stigma (gender-related psychological and physical abuse) was associated with depression.
PHYSICAL HEALTH STATUS
The now well-known health concomitants of aging are similarly represented among heterosexual and LGBT older adults, although they may be exacerbated by factors associated with gender identity and sexual orientation. These factors are rarely studied, and thus are fertile ground for subsequent research. For example, data suggest that LGBT adults, including older persons, rate their health more poorly than heterosexual adults. The Massachusetts Department of Public Health issued a report in 2009 that included 1,598 LGBT and heterosexual adults (with mean ages in the range of middle adulthood). Among participants, 67.3 percent of transgender adults (n = 35), 73.5 percent of bisexual adults (n = 100), and 78 percent of gay and lesbian adults (n = 749) rated their overall health as “excellent” or “very good,” compared with 82.5 percent of heterosexual adults (n = 371) (Massachusetts Department of Public Health, 2009).
In a national study comparing more than 1,200 LGBT people aged 45–64 with a group of just over 1,200 individuals aged 45–64 from the general population, the MetLife (2010) survey found that the percentage
reporting recent receipt of (and need for) care was greatest (19 percent) among the 5 percent of the sample identifying as transgender—comparable to the percentage of lesbians, somewhat greater than the percentage of bisexual women and men (17 percent), and much higher than the percentage of gay men as well as women and men from the general population (9 percent).
Finally, Fredriksen-Goldsen and colleagues (2011) found that almost one in four (23 percent) of their sample of 2,560 LGBT adults aged 50 and older reported that their general health was poor.
Although the study of sexuality has seen tremendous growth over the last 60–70 years, beginning with Kinsey’s groundbreaking research in the 1940s and 1950s, research on sexuality and aging has lagged. It is likely that research in this field is largely undeveloped as a result of ageism and inaccurate beliefs about sexuality ending in later life. As Schlesinger (1996) has noted, myths surrounding older persons and sexuality (i.e., that older persons are sexually undesirable and are not desirous of or capable of sexual expression) continue to influence our culture’s perspectives on sexuality and the elderly. Research has shown that these beliefs are false and that many adults continue to be sexually active throughout their lives (Lindau et al., 2007). While the very notion of a gay and lesbian gerontology raises the issue of sexuality directly (de Vries and Blando, 2004), limited research has explored sexual health among older LGBT people.
In contrast, there is some research on sexual dysfunction in these groups. Erectile dysfunction has been associated with aging among men, although no research has investigated the extent of the problem among men who have sex with men. Rawls (2004) reports on a reanalysis of existing data on men who have sex with men who either identified as gay or reported same-sex contact in the Urban Men’s Health Study (Catania et al., 2001). Of the total sample of 2,881 men, 372 between the ages of 50 and 85 were included in the analysis. Among these men, 38.5 percent reported some “sexual difficulties” in the year prior to their interview. Of those reporting sexual difficulties, just under two-thirds cited health problems and/or medications as a contributing factor, and more than one-third cited psychological problems.
Some reference to sexual dysfunction is included in research on prostate cancer, as noted by Asencio and colleagues (2009) in their qualitative focus group study of 36 midlife and older gay men (the majority being aged 50–70). The authors found that the fear of sexual dysfunction would influence respondents’ decisions about how to treat prostate cancer, with age, socioeconomic status, and race moderating this association.
Little empirical research has explored sexual functioning among older lesbians, bisexuals, and transgender persons. In terms of reproductive
health, Moore and colleagues (2003) report high rates of polycystic ovarian disease in transgender men, with implications for the risk of endometrial cancer.
The literature includes some discussion (and controversy; see, e.g., Garnets and Peplau, 2006) about “lesbian bed death.” Early research (e.g., Kehoe, 1989) on older lesbians found large numbers reporting no sexual experience in the previous year and low rates of sexual satisfaction. Kehoe’s study was conducted with 100 self-identified lesbians over age 60 who responded to calls for participants posted in lesbian and feminist newsletters and bookstores, women’s centers, and college and university campuses and associations. Little published research has followed this early, groundbreaking work to support or challenge its findings, and the concept remains in the lexicon of the literature.
Valanis and colleagues (2000) report on the Women’s Health Initiative study, which included women aged 50–79 of postmenopausal status (n = 93,311). Women were placed into five sexual orientation groups based on their responses: heterosexual (n = 90,578), bisexual (n = 740), lifetime lesbian (sex only with women ever) (n = 264), adult lesbian (sex only with women after age 45) (n = 309), and never had adult sex (n = 1,420). The authors compared reproductive health outcomes and behaviors among the participants. Their results demonstrate similarities in oral contraceptive use and rates of pregnancy and hormone replacement therapy among the five sexual orientation groups. The rate of oral contraceptive use was highest for bisexual women (54.6 percent), and also high for adult lesbians (52.1 percent) and heterosexual women (45.4 percent). Heterosexual women had the highest rate of hysterectomy (41.5 percent), although the rates were similar for adult lesbians (35.0 percent) and bisexual women (39.6 percent). Adult lesbians, lifetime lesbians, bisexual women, and heterosexual women had similar rates of ever using hormone replacement therapy (HRT) (66–71 percent), higher than the rate among the no adult sex group (48 percent). These results reveal that, despite differences in sexual orientation, rates of hysterectomy, oral contraceptive use, and HRT use are extremely similar.
Valanis and colleagues also found high rates of ever being pregnant among the bisexuals (80.8 percent) and adult lesbians (63 percent) compared with the lifetime lesbians (35 percent). In the aggregate, these data indicate that pregnancy and parenting may play a significant role in the lives of many women who have sex with women, with relevance for psychosocial and physical well-being.
Cook-Daniels and Munson (2010) have been among the very few to study sexual practices and behaviors among transgender elders. They report on a sample comprising 272 transgender participants and/or their intimate partners aged 50–79, generated by means of an online survey in which participants were recruited through listservs directed to transgender adults and
support groups. Gender identity was available for about one-third of these respondents. About half of these individuals identified as male-to-female and about one-third as female-to-male, with the remainder identifying as nontransgender male or female. About one-quarter of respondents to a question about sexual practices said they were celibate or not in a sexual relationship; sexual practices and behaviors were varied. Cook-Daniels and Munson (2010) also report on the particulars of sexual activities, including body parts that were “on” or “off limits”; the extent to which sexuality, including libido, was influenced by being transgender or by being the partner of a transgender person; negotiation of sex; and other areas not typically noted in the existing research but with relevance for populations beyond transgender persons.
In addition, Cook-Daniels and Munson (2010) report on the sexual violence experiences of transgender elders. Using the online survey and sampling methods described above, another sample of 53 transgender persons aged 50–64 was formed, 88 percent of whom were male-to-female. Almost two-thirds of these respondents reported “unwanted sexual touch,” half having experienced this within the past 15 years. In the Virginia survey mentioned above, 27 percent of respondents (about one-third of female-to-males and one-quarter of male-to-females) reported having been forced to engage in unwanted sexual activity after age 12. In the Kenagy (2005) Philadelphia surveys, a higher proportion—58 percent—of a broad, undifferentiated age group had been forced to have sex; the proportion was significantly higher for male-to-females. Clearly, this is an area that merits greater examination with many issues being unaddressed, including, for example, sexual functioning after sex reassignment surgery and the impact of long-term hormone use on sexual functioning. This area takes on even greater importance in the context of abuse against transgender persons more generally, which is noted to be high (e.g., Witten and Whittle, 2004) and explored further below.
Prostate cancer has the highest prevalence among men over age 60 (Altekruse et al., 2010) and has recently received significant public attention. Much of what is known about the impact of prostate cancer is based on older heterosexual men in long-term marital relationships (Blank, 2008) and focuses largely on erectile dysfunction. Blank and colleagues (2009) suggest that the experiences for gay men, who often lack long-term partners and may be participants in sexual behaviors that differ from those in traditional heterosexual encounters, may be quite different and largely understudied.
As previously mentioned, data from focus groups (a total of five groups comprising 36 participants with a mean age of 49.3 years, most aged
50–70) suggest that gay men have limited understanding of their prostate and the range of sexual challenges associated with prostate cancer and its treatment. The gay men in these groups, of varying socioeconomic status, addressed physician–patient relationships, including coming out to one’s medical provider (an issue also noted in other research), as well the potential treatment-related sexual problems attributable to their sexual practices, sexual roles, and beliefs about gay relationships and the gay community (Asencio et al., 2009). There are no known data on incidence rates of prostate cancer among gay or bisexual men; information on sexual orientation is not collected in the Surveillance Epidemiology and End Results database. It is important to note that transgender women, even after reconstructive surgery, retain their prostate; there are also no data on prostate cancer in this population.
Some strains of the human papillomavirus (HPV) are causally linked to the development of anal cancer, although little is known of its prevalence among HIV-negative men. As discussed in Chapter 5, in a study of 1,218 HIV-negative men who have sex with men aged 18–89 (Chin-Hong et al., 2004), the overall prevalence of anal HPV infection was 57 percent and was similar across all age groups. The sample included men aged 55 and older (the oldest age group included in the study; the sample was self-selected and based on both HIV status and self-reported sexual behaviors). Significant predictors included a history of receptive anal intercourse (and age at first receptive anal intercourse) and the number of male sex partners during the preceding 6 months.
For women, breast cancer is the most prevalent form of cancer in later life; in fact, age is the greatest risk factor for the disease. In the Women’s Health Initiative study mentioned earlier in this chapter, Valanis and colleagues (2000) found that 14 percent of the no adult sex group and lifetime lesbians and 17.6 percent of the bisexuals reported ever having had any cancer, compared with 11.9 percent of heterosexual women. The bisexual group also had the highest rate of breast cancer (8.4 percent). In fact, all of the nonheterosexual groups had higher rates of breast cancer than the heterosexual group, but were less likely than the heterosexual group to have recently had a Pap test or mammogram. Cervical cancer was highest among bisexual women (2.1 percent) and lifetime lesbians (2.2. percent). As noted in the previous chapter, health-related behaviors of lesbian and bisexual women (smoking, obesity, drinking) theoretically contribute to higher risks for breast, ovarian, and colon cancer.
Zaritsky and Dibble (2010) studied a sample of 370 self-identified lesbian and heterosexual sister pairs aged 40 or older who anonymously completed a survey about their health. The study used multiple methods, including respondent-driven sampling. For their secondary data analysis, the authors examined data on those sister pairs with at least one sister aged
50 or older (n = 42 pairs, or 84 women) and examined risk factors for reproductive cancers. They found that, compared with their sisters, older lesbians had greater risk factors for the major reproductive cancers (breast, ovarian, and endometrial) because they had higher rates of nulliparity, which resulted in less breastfeeding, as well as a trend toward obesity. On the other hand, the older lesbians had less risk for cervical cancer because obesity was the only risk factor for this form of cancer they were more likely to have than their sisters; the sisters were more likely to have used birth control pills and to have had more pregnancies, both of which are associated with a higher risk of cervical cancer. While the authors found no significant difference in rates of breast cancer between the groups, they note that this may have been due to the small sample.
Beyond case studies, little research exists on the risk for cancer among transgender elders, even though they may be at increased risk for breast, ovarian, uterine, or prostate cancer as a result of hormone therapy (Feldman and Goldberg, 2007; Van Kesteren et al., 1997).
As mentioned in Chapter 5, lesbians may have higher rates of risk factors for cardiovascular disease—including smoking, drinking alcohol, and obesity—than heterosexual women. Roberts and colleagues (2003) surveyed 648 women, comparing various cardiovascular risk factors between 324 self-identified lesbians aged 40 and older residing in California and their self-identified heterosexual sisters closest in age. They found that lesbians, as a group and in comparison with their similarly aged heterosexual sisters, had significantly higher weights, body mass indexes, waist circumferences, and waist-to-hip ratios, which placed them at higher risk for cardiovascular disease.
In the sample from the Women’s Health Initiative of women aged 50–79 described earlier, Valanis and colleagues (2000) found that the two lesbian groups had a slightly lower prevalence of stroke and hypertension than the other groups (bisexual, heterosexual, nonsexual), but had the highest rates of myocardial infarction. General health scores, however, were quite similar for the heterosexual, bisexual, and two lesbian groups. Eyler (2007) found that male-to-female transgender adults using estrogen had an increased risk for venous thromboembolism—a risk exacerbated by smoking, age, and inactive lifestyles.
There has been clinical concern about rates of diabetes, ovarian disease, and stroke among transgender elders (Feldman, 2007). An important health consideration for transgender elders is that Medicare generally does not cover transition-related care. This includes potentially long-term hormone treatments, the cessation of which may be both physically and emotionally
traumatic. Among transgender individuals, there is some evidence of an association between poor hormonal therapies (e.g., outside of regular medical venues) and negative health outcomes in later life, including osteoporosis, cardiovascular disease, and poor oral health (Witten and Whittle, 2004). Williams and Freeman (2005) and Witten and Whittle (2004) suggest that many transgender elders may be at greater risk for health impairment than those who are younger because of the longer duration of hormone use, which may well exacerbate the effects of aging, such as cardiac or pulmonary problems. In addition, many transgender women start hormone therapy at older ages (middle age or later) and while having other aging-related health conditions, which may place them at risk for short- to medium-term adverse events (Feldman, 2007). Moreover, the options for lowering hormone doses or discontinuing hormone therapy are limited given the lack of access to sex reassignment surgery under Medicare and the health risks involved. Fredriksen-Goldsen and colleagues (2011) found that 45 percent of the older LGBT persons in their large study reported having high blood pressure; 43 percent reported high cholesterol and 6 percent reported having had a heart attack.
A variety of studies, both qualitative and quantitative, have found that lesbians are more likely than heterosexual women to be overweight and obese, and research suggests this remains true into the later years (Clunis et al., 2005; Roberts et al., 2003; Valanis et al., 2000). This is an issue that has not been examined empirically for gay men and transgender persons in later life.
HIV/AIDS remains a special and significant case for aging men and transgender women in particular. About 29 percent of people living with AIDS in the United States are currently aged 50 and over, but 70 percent of people with HIV in the United States are over age 40, suggesting that aging with the disease will be a significant health issue in years to come (CDC, 2007). The Centers for Disease Control and Prevention (CDC) estimates that the proportion of people living with HIV who are over age 50 is now more than double that of people under age 24, yet few (if any) HIV prevention programs target older adults, and it remains rare for physicians and other health care providers to talk with their older patients about HIV risk. While the percentage of gay and bisexual men included in these estimates is not clear, the percentage can be assumed to be large given that more than half of all new HIV infections in the United States occur among men who have sex with men (CDC, 2010).
Participants in an ethnographic study of older gay men (69 total participants representing a convenience sample, most aged 50–65) said they felt that HIV/AIDS has had a substantial effect on older gay men. Those who have been infected with the disease have had to face a disruption of their normal aging process, and those who have cared for others who have been infected have aged prematurely (Brown et al., 2001). One study of HIV/AIDS and aging (based on a sample of 914 HIV-positive persons aged 50 and older recruited from a network of New York City AIDS service organizations) found that more than half of the sample had depression, a proportion much larger than that in the general population (Karpiak et al., 2006). While sexual orientation was not used as a variable in that study, 33 percent of the sample identified as homosexual or bisexual. Although no published data address the risk and prevalence of HIV among transgender persons, a variety of community-based needs assessments suggest that they have a higher risk than (primarily white) gay men of comparable age.
There are similarities between the aging process and the course of HIV infection, with some evidence suggesting that HIV compresses the aging process, possibly accelerating the development of morbidities and frailty (see High et al., 2008). A funding opportunity announcement from the National Institutes of Health that calls for research on the medical management of older patients with HIV (Department of Health and Human Services, 2010) identifies nine areas of interest:
age-related changes in immune function;
age-related differences in response to treatment;
age-related changes in pharmacokinetics, pharmacodynamics, and pharmacogenomics;
metabolic complications of HIV/AIDS;
neurologic complications of HIV/AIDS;
neuropsychiatric complications of HIV/AIDS;
frailty and functional status; and
complexity of care.
Systematic research examining HIV among older transgender persons also is lacking in the literature, although several authors and reports have suggested a higher prevalence of HIV among transgender persons generally, in particular male-to-females (e.g., Kenagy and Hsieh, 2005).
The area of disability and aging among LGBT populations is rarely considered, empirically or theoretically; thus, there is little in this area
on which to report. A few (mostly community) surveys on LGBT aging have asked about disability or chronic conditions. For example, almost 30 percent of a sample of 1,301 LGBT persons ranging in age from 18 to 92 reported some self-identified form of chronic illness or disability; these percentages increased to 36 percent of men and 38 percent of women aged 60 and older. This sample was drawn from community resources/ organizations for a study conducted by a nonprofit LGBT senior housing agency. HIV/AIDS, discussed separately above, likely influences this reporting of illness and disability (Adelman et al., 2006). Cook-Daniels and Munson (2010), in their online survey of 272 transgender respondents described above, found that 36 percent had a physical or mental disability or challenge. In a recent report by Fredriksen-Goldsen and colleagues (2011), 47 percent of LGBT persons aged 50 and older reported a disability (significantly more women than men—53 and 43 percent, respectively).
In relative contrast, caregiving has been a productive area in gerontological research. A focus on older LGBT persons, however, is rare, although the study of AIDS caregiving, involving primarily younger gay men and lesbians, has been comparatively well represented. A qualitative study of caregiving conducted in Canada (Brotman et al., 2007) found that discrimination was salient in the lives of gay and lesbian elders and their caregivers. Similarly, in their study involving 36 chronically ill LGB adults aged 50 and over and their informal caregivers, Fredriksen-Goldsen and colleagues (2009) found that historical and current discrimination as experienced by chronically ill LGB adults and their caregivers appeared to manifest in higher levels of psychological distress, leading to cumulative mental and physical health problems, for both members of the caregiving dyad. No studies have specifically studied the issues transgender elders may face in terms of availability of appropriate caregivers. These issues are of particular concern as transgender individuals, even more so than LGB individuals (Bockting and Avery, 2005), face rejection from family and community members, who therefore may not be available or appropriate as caregivers (Witten, 2009; Witten and Eyler, 2007).
Transgender-Specific Physical Health Status
Witten and Eyler (2007) and others have commented on the paucity of research examining the physical health of transgender persons in later life. Witten notes, for example, that little is known about the risks associated with the use of “contragender” hormones and genital and other surgeries; similarly, little is known about age-related cancers (breast and prostate), heart disease (stroke, cardiovascular conditions), and cerebrovascular diseases among transgender people.
RISK AND PROTECTIVE FACTORS
In the MetLife (2010) survey, more than 1,200 LGBT participants were asked: “Some people have said that being LGBT has helped them prepare for aging. In what ways, if any, has being LGBT helped you prepare for aging?” Almost three-quarters of the sample felt that they were prepared for aging by their sexual-minority status, specifically the associated personal/interpersonal strengths and experience with overcoming adversity. Personal/interpersonal strengths cited included being more accepting of others, not taking anything for granted, being more resilient or having greater inner strength, having greater self-reliance, being more careful in legal and financial matters, and having a chosen family. Participants who had overcome adversity cited knowing how cruel society can be and being able to cope with discrimination.
When asked the opposite question—“In what ways, if any, has being LGBT made it more difficult for you to prepare for aging?”—about half responded affirmatively. They cited fewer opportunities to find a new relationship, fear of being doubly discriminated against as they age, feeling vulnerable with health care providers, and having fewer opportunities for social activities.
In an earlier review of almost 60 studies on gay men and aging, the authors found that happiness and successful adaptation to aging were commonly reported by older gay men, perhaps because of coping skills and competencies that are particularly well developed among aging homosexuals (Wahler and Gabbay, 1997).
Beyond these findings, the literature documents a number of risk and protective factors that influence the health of LGBT people throughout the life course. Stigma, discrimination, and victimization; violence; substance use; and childhood abuse have all been documented as risk factors for LGBT elders. Much less research has been conducted on protective factors, although crisis competence and social support have been identified. However, the dearth of literature in this area demonstrates the need for further research.
Stigma, Discrimination, and Victimization
Discrimination plays a significant, recurring, and pervasive role in the lives of LGB persons, and perhaps in the lives of older LGB persons in particular, as suggested above.
In a recent study using data from the 2004–2005 National Epidemiologic Survey on Alcohol and Related Conditions, McLaughlin and colleagues (2010) examine associations between perceived discrimination and
psychiatric disorders among individuals aged 20–90 (n = 34,653). LGB (n = 577) respondents were compared with black (n = 6,587), Latino (n = 6,359), and female (n = 20,089) respondents regarding self-reported experiences of past-year discrimination. Blacks reported the highest levels of discrimination (24.6 percent), followed by the LGB group (21.4 percent). Additionally, the authors found strong associations between self-reported discrimination and psychiatric disorders, although none of these associations were significant, likely because of the small LGB sample size. Unfortunately, the age of the respondents is not reported in this study, nor are subgroup analyses crossing racial and ethnic group membership with LGB status.
Fredriksen-Goldsen and colleagues (2011) found that older LGBT adults reported an average of four incidents of victimization and discrimination over the course of their lives due to their sexual orientation or gender identity; these experiences typically took the form of verbal insults (65 percent) and physical violence (40 percent). The rates were significantly higher for men than for women. For transgender adults aged 50 and older, the prevalence was even higher, with an average of about six incidents over the course of their lives.
Discrimination toward all sexual minorities has been alleged and described in a variety of reports. For example, analyses conducted by the Williams Institute at the University of California, Los Angeles (Goldberg, 2009), reveal that older lesbian couples have significantly lower income levels than comparably aged heterosexual couples, likely owing to employment discrimination over their lifetimes and the concomitant earnings disparities, reduced lifelong earnings, lower social security payments, and fewer opportunities to build pensions. Social security, for example, provides spousal, survival, and death benefits—none of which are available to same-sex couples, who are not recognized by federal law.
The challenges of discrimination exist within the older LGBT community as well. Some research has shown that older gay men feel ignored because of their age and believe that LGBT communities do not do enough to engage older people in social activities (Hostetler, 2004). Likewise, a nonacademic study (Bergling, 2004) examined the role of ageism in the gay male community, reporting high levels on the part of both younger and older gay men.
Discrimination and fear of discrimination are common and prominent themes in studies of LGBT aging. One study of 127 LGBT people aged 15–72 found that 33 percent of gay and lesbian respondents thought they would have to hide their sexual identity if they moved to a retirement home (Johnson et al., 2005). In focus group research conducted across Canada, Brotman and colleagues (2003) found that older gay men and lesbians (n = 21) often spoke of mistrust of the health and social service networks
as a result of lifelong experiences of marginalization and oppression. Such experiences continued to the present day, with many instances of overt homophobia and ageism and covert experiences of neglect and invisibility being reported—both within the LGBT community and more broadly.
As previously noted, few studies have explicitly examined racial and ethnic groups in their samples. One exception is David and Knight (2008), who found in a study of 383 white and black gay men from across the adult life course that the older black gay men experienced significantly higher levels of ageism than the older white gay men and higher levels of perceived racism than the younger black gay men. The authors suggest that the differences in perceived racism may be a cohort difference, reflecting the views of society when the older men were coming of age. It is notable that these older black gay men did not experience higher levels of negative mental health outcomes.
The combined stigma of being elderly and transgender can serve as a strong traumatizing force, potentially exacerbating both forms of discrimination and stigma (Witten and Eyler, 2007). Studies of the particular experiences of stigma in this population appear to focus on the health care system and are reported later in the chapter.
Another area that is substantially underresearched is LGBT elders’ experiences of violence. In a previously mentioned study involving LGB adults, D’Augelli and Grossman (2001) asked participants (n = 416, aged 60–91) about their lifetime experiences with violence based on their sexual orientation. They found that 63 percent reported verbal abuse, 29 percent had been threatened with violence, 16 percent had experienced assault, 12 percent had experienced assault with a weapon, and 11 percent had had an object thrown at them.
Systematic examination of the violence experienced by transgender elders has been inadequate, although several authors have commented that rates of violence and crime in this population are sufficiently acute to warrant consideration as a primary health priority for the transgender community (Xavier et al., 2007). A small, online survey of 30 transgender adults aged 50–70 revealed that 64.8 percent had experienced emotional or psychological abuse more than once in their lives (Cook-Daniels and Munson, 2010).
Tobacco and alcohol use appear to be greater among older LGB populations than among older heterosexuals (Gruskin et al., 2007; Tang et al.,
2004); the Virginia study of transgender adults, including a small proportion of older adults, reports similar findings (Xavier et al., 2007). No particular data on older transgender adults are available.
Using the Alcohol Use Disorders Identification Test, developed by the World Health Organization, with a previously mentioned sample of 416 LGB elders aged 60–91, Grossman and colleagues (2001) found that gay men had significantly higher levels of alcohol use and problem drinking than lesbians. Valanis and colleagues (2000) found that adult and lifetime lesbians, as well as bisexual women, in their sample had the lowest rates of never smoking and were more likely to be current smokers. They were also the most likely to use alcohol and to use more of it compared with the heterosexual and never sexual groups.
Using data from the Chicago Health and Life Experiences of Women Study, structured interviews were conducted with 447 adult women (aged 18–83) who self-identified as lesbians (48 percent non-Hispanic white, 28 percent non-Hispanic black, and 20 percent Latina). The researchers compared the prevalence of lifetime and 12-month drinking indicators across racial/ethnic groups and across four age groups (including those aged 51 and older, n = 74). Forty-five percent of women in the oldest group reported that they were light drinkers, while 19 percent reported being moderate drinkers and 8 percent being heavy drinkers. While findings from general population surveys have shown that women’s rates of drinking tend to decrease with age, there were few differences across the age groups in this study (Hughes et al., 2006).
In the research of Balsam and colleagues (2005), in which age was treated as a continuous variable, LGB participants were more likely than their heterosexual counterparts to report experiences of childhood sexual abuse; moreover, sexual-minority status significantly predicted all variables of childhood abuse. LGB participants reported higher levels of overall lifetime victimization than their heterosexual counterparts.
In D’Augelli and Grossman’s (2001) research with 416 LGB adults aged 60 or older, the earlier a person was aware of her or his sexual orientation and first disclosed it to others, the more likely he or she was to report incidences of physical assault. Those who had been physically attacked spent more of their lives aware of their sexual orientation. These findings suggest that abuse and victimization may occur at an early age for LGB people. More than one-half (58 percent) of the convenience, online sample of transgender persons over age 50 mentioned earlier reported instances of sexual abuse (defined as “unwanted sexual touch”) prior to age 19 (Cook-Daniels and Munson, 2010). In a life span sample of transgender persons,
Kenagy (2005) found a comparable percentage (53.8 percent) reporting that they had been forced to have sex; she also found that more than half of the 80 respondents to a question on physical violence reported a physical assault at some point in the course of their lives, with male-to-females being significantly more likely to have experienced abuse than female-to-males.
In the MetLife (2006) survey, 38 percent of the 1,000 LGBT participants reported positive consequences in their lives as a result of being a sexual or gender minority. Positive aspects included strong character traits, resilience, and better support networks. Differences by race and ethnicity are worth noting, with Latino (51 percent) and black (43 percent) respondents being considerably more likely than the sample as a whole to report that their LGBT identity was beneficial as they aged (MetLife, 2006).
As noted earlier, a recent follow-up to this survey found that almost three-quarters of another national LGBT sample (n = 1,206) felt that “being LGBT has helped them prepare for aging.” Among those who saw benefits, two broad categories of benefit were identified: personal/interpersonal strengths, including being more accepting of others, being more resilient, and having greater self-reliance, and overcoming adversity. Still, more than a quarter of respondents said their sexual orientation and/or gender identity had not helped them prepare for aging (MetLife, 2010).
Several authors have referred to such findings and interpretations as “crisis competence.” Kimmel (1978) proposed that dealing with the crises of “family disruption, intensive feelings and sometimes alienation from family … will provide a perspective on major life crises … that buffers the person against later crises.” Crisis competence embodies the development or enhancement of life skills as a result of having to deal with being a sexual minority and all that entails in a heterosexual society, perhaps placing older sexual minorities at an advantage, relative to heterosexuals, in confronting the issues and crises of aging. For example, recent findings from a community sample of 396 self-identified gay, lesbian, and bisexual people aged 18–59 found that those aged 40 and over scored in the upper tertile on more dimensions of social well-being compared with those younger than 40; older participants also scored higher than younger participants on coherence, acceptance, and contribution (Kertzner et al., 2009). It should be noted that these data are within-LGB comparisons and cannot be used to address whether these age-related gains in social well-being surpass those experienced by heterosexual older adults.
Social support has been identified as a potential protective factor in the lives of LGBT elders. Grossman and colleagues (2000) comment, for example, that the positive contributions of friends to individual well-being
should be even stronger in the lives of older gay men and lesbians given that friends and the support they provide “can serve a unique function in mitigating the impact of stigmatization” (p. 171). Results of the qualitative study of de Vries and Hoctel (2006) with a sample of gay men and lesbians aged 55–81 support this proposition.
Certain socioeconomic factors may also be seen as protective. In a variety of studies and in at least one review of smaller community-based surveys (de Vries, 2006), education levels of LGBT older persons exceeded those of comparably aged heterosexual persons (the latter as reported in census data, given that heterosexual comparison groups are rare in LGBT research). This advantage has been noted elsewhere: Black and colleagues (2000) report similar findings in their analysis of data generated by the U.S. census. If education can be regarded as a proxy for problem solving, solution seeking, and action taking, as Lopata (1993) has suggested, such data provide some cause for optimism. As discussed in Chapter 2, however, the effect of education may not be the same across racial and ethnic groups; some groups may be less likely to disclose sexual orientation with increasing education (Kennamer et al., 2000).
Although research has not explicitly addressed the protective factors associated with transgender aging, Witten (2002) has proposed that, notwithstanding the increased medical risks that may accompany gender transition for older persons, certain physical exigencies of aging may facilitate social gender transition. Some theorists describe this as the normal unisex of later life (e.g., Gutmann, 1985), in which women and men are more physically similar than previously in the life course. Witten (2002) notes that these similarities include a loss of facial skin tone for men and reduced estrogens for women. The loss of muscle mass and increased body fat similarly render males and females more similar in later life. These changes may be seen as advantages for older transgender people, particularly those who begin the transition process in later life.
Older adults tend to be the most frequent users of health care services in the United States. This is the case among LGBT populations as well; however, their use of health services may be complicated by trepidation and fear of discrimination.
Access and Utilization
As with early/middle adulthood (Chapter 5), limited attention has been paid to access to and utilization of health care among older LGBT persons. Data from the California Health Interview Study, one of the very few
state-level health surveys to include information on LGBT persons, reveal that LGBT adults of all ages are much more likely than heterosexual adults to delay or not seek medical care; among respondents, 30 percent of transgender adults, 29 percent of LGB adults, and 17 percent of heterosexual adults delayed/did not seek care (Movement Advancement Project and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders, 2010). For older adults in particular, these findings are often attributed to a reluctance to disclose their sexual orientation or gender identity in health care settings for fear of discrimination and provider bias.
Age is infrequently considered as a variable in research on health care access or health insurance. A survey by the Transgender Law Center (Hartzell et al., 2009) of 646 transgender adults living in California, including 80 respondents over age 55, found that even when covered by insurance, 42 percent of respondents had delayed seeking care because they could not afford it, and 26 percent reported health conditions that had worsened because they postponed care. Some evidence from earlier studies suggests that older lesbians and bisexual women obtain fewer cervical cancer screenings (Price et al., 1996), and that many older gay men and older lesbians seek health care services less frequently than their heterosexual peers (Harrison and Silenzio, 1996).
In narrative comments collected in the previously described brief online survey by Cook-Daniels and Munson (2010), fear and shame emerged as reasons for not accessing available services. Kammerer and colleagues (1999), in their interview and focus group research with mainly midlife transgender persons, cite lack of insurance and lack of acceptance/fear of rejection as the primary reasons for either delaying or not seeking services. They report disparaging and transphobic comments from staff at homeless shelters (as well as from others seeking such services), as well as a general lack of services tailored to the particular needs of transgender persons.
In the life-course sample described by Kenagy (2005), more than one-quarter (26 percent) of the sample reported being denied medical services because they were transgender. Similar results are reported by Xavier and colleagues (2007) in their description of a life span sample of transgender persons in Virginia.
Quality of Care
While little research exists on the quality of care currently received by LGBT elders, a national survey found that fewer than half of LGBT people in midlife believe they will receive respectful care in old age (MetLife, 2006).
Using focus group data, researchers have explored the anticipated (Orel, 2006a) and actual (Brotman et al., 2003) discriminatory experiences older LGB adults have had within health care settings. In both cases, the au-
thors suggest that discrimination (anticipated or actual) is associated with a decreased likelihood of seeking health care services (relative to comparably aged heterosexual women and men, as noted above). Observations from a variety of community groups and community-based needs surveys suggest that LGBT elders delay seeking health care for fear of discrimination and provider bias. The survey conducted by the Transgender Law Center, mentioned previously, found that 30 percent of respondents had delayed seeking treatment or preventive care because of disrespect or discrimination from providers (Hartzell et al., 2009). Witten (2002) notes that the apparent mismatch between genital anatomy and gender of presentation can result in disclosure; confusion; and perhaps difficulty in obtaining appropriate, sensitive health services at all levels, including long-term care.
Long-term care issues are particularly salient for older persons and especially so for LGBT elders, who are disproportionately without partners and children, the primary caregivers for older adults. Shanas (1980) describes the principle of substitution or, as Qureshi and Walker (1989) term it, the “hierarchy of normative obligation priorities,” referring to the order in which individuals are called upon (and/or present themselves) to be providers of support or informal caregivers. The typical order is spouses first; followed closely thereafter by children (typically daughters and daughters-in-law); then by other, more distant relatives; and finally by friends. This order reflects traditional family patterns, rendering it significantly less applicable to the lives of aging LGBT individuals (Barker et al., 2006).
Although long-term care is often mentioned in the literature on LGBT aging, there are few empirical studies to reference. Fairchild and colleagues (1996) examined nursing home social workers’ (n = 29) perceptions of staff attitudes toward residents’ sexuality (inclusive of LGBT identification) in the facility in which they worked. Social workers characterized staff attitudes toward gay and lesbian residents as negative and reported that one nursing home avoided “the problem of homosexuality and lesbianism all together: ‘We don’t allow partners of the same sex into the home…. It’s part of the admission requirements’” (p. 166). Some advocates who work with elderly LGBT residents caution that they may encounter considerable challenges, including hostile staff members and fellow patients; denial of visits from families of choice or from friends the staff does not approve of; refusal to allow same-sex partners to room together; and refusal to involve families of choice in medical decision making, even when legal directives are in place.
Some literature provides a glimpse of the issues surrounding the delivery of care for LGBT people. A report prepared by the Office of the New York City Public Advocate (2008) claims that the health care environment in New York City is both heterocentric (oriented toward heterosexual practices and roles) and gender-normative (oriented toward society’s expec-
tations of gender). Providers lack knowledge about health disparities affecting LGBT persons of all ages, and LGBT individuals experience hostility and discrimination in care. Medical forms often do not reflect patient diversity (e.g., gender identity, relationship status) or the breadth of patients’ care networks. The report notes that LGBT persons often assume they are not welcome in an institution, and accordingly avoid or delay seeking care. The report recommends mandatory LGBT diversity training and the establishment of a zero tolerance discrimination policy.
A community needs assessment (Orel, 2006a) found that slightly more than half of LGB elders were dissatisfied with federal, state, and local services for older adults. They reported that these services failed to meet their unique needs. The same study found that LGB elders who had disclosed their sexual orientation to their physician believed they had a more open and trusting relationship as a result of the disclosure. Finally, small, mainly qualitative studies with transgender convenience samples that included elders have found that treatment facilities often are not prepared to accommodate transgender patients because of a lack of provider competence and strong segregation by gender (Clements et al., 1999; Kammerer et al., 1999; Nemoto et al., 2005).
In addition to sociodemographic and familial factors, which influence the health of LGBT people across the life course, LGBT elders face a number of end-of-life issues.
There is a paucity of research documenting the influences of race, ethnicity, geography, and socioeconomic status on older LGBT individuals.
Some studies do describe the racial categories that make up their samples. However, the results of these studies are rarely analyzed by racial or ethnic group because of insufficient data.
Similarly, geography has rarely been explicitly considered. Small qualitative studies have suggested some of the unique situational and support issues experienced by rural LGB elders (Comerford et al., 2004). King and Dabelko-Schoeny (2009) explored health care service utilization and support networks among 20 midlife and older LGB participants who lived in rural communities (all of whom were at least 40 years of age). Respondents described transportation difficulties, the lack of choices for care, problems with affordability of care, and the lack of connection and sense of belonging to a community. The authors conclude that the unique issues faced by LGB adults, such as isolation and the lack of informal support, make
obstacles to aging in place difficult to overcome for LGB adults living in rural communities.
As noted earlier, differences in education between LGBT and heterosexual people have been observed in both small- and large-scale studies, particularly favoring lesbian and gay adults, including older adults. Recent analyses of the Massachusetts Behavioral Risk Factor Surveillance System surveys (Conron et al., 2010), inclusive of adults aged 18–64 and with no analysis by age, found that lesbian and gay adults were more likely than heterosexual and bisexual adults to have at least a 4-year college degree. Reported levels of education among samples of transgender persons vary, with some studies reporting comparable levels (e.g., Witten and Eyler, 1999) and some lower overall levels (e.g., Kenagy, 2005). Authors often note that the mechanisms by which samples are recruited have an impact on such results.
In contrast with differentials in education, studies have found that income levels among LGBT populations tend to be lower than those among the general population (the latter being based on U.S. census means [e.g., Adelman et al., 2006] or samples of the general population [e.g., MetLife, 2010]). Some researchers (e.g., de Vries, 2006) have commented on the apparent and surprising lack of association between education and income, suggesting that LGB persons may “settle” for lesser employment possibilities than those for which they might be qualified in order to remain in or seek out an LGBT-friendly workplace and/or community.
As noted above with reference to caregiving, families, formally defined, play a significant role in the social support of elders; however, the presence of and access to biological and other legal kin is limited in the lives of LGBT elders. For example, a variety of studies have noted that LGBT elders, especially gay men, are much less likely than their heterosexual counterparts to have partners, both legally recognized and informally. As reported in the MetLife (2010) survey, 58 percent of LGBT participants had partners, compared with 72 percent of the general population. Grossman and colleagues (2000) found that just over half of the LGB older adults in their survey (n = 416) were not partnered.
Regional surveys of LGBT elders have found even more dramatic differences in partnering between older LGBT and heterosexual adults. In San Francisco, for example, more than 70 percent of gay and bisexual men and almost 50 percent of lesbian and bisexual women over age 65 reported not having a partner (Adelman et al., 2006). It is worth noting that partnered LGBT elders may have varying living arrangements. In the previously mentioned survey of older adults by Grossman and colleagues
(2000), for example, 62 percent of those with partners reported living with those partners.
Adult children are common sources of support and care for heterosexual older persons, as noted above; in contrast, LGBT elders are less likely to have children. In the MetLife (2006) survey, about 20 percent of LGBT participants reported being parents (MetLife, 2006). The San Francisco survey referenced above found that 72 percent of gay men and 43 percent of lesbians over age 65 reported having no children (Adelman et al., 2006). A national LGBT aging needs assessment conducted by the group Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) in 2003 found that LGBT elders were four times less likely to have children and grandchildren than non-LGBT older adults. Less likelihood of access to a partner and to children for later-life care significantly distinguishes the experiences of LGBT and heterosexual elders.
The potential and understudied role of sibling ties is highlighted in the MetLife (2010) report, wherein siblings figure significantly in support exchanges and in discussions about end of life.
Orel (2006b) presents findings from a qualitative study of 16 Midwestern U.S. self-identified lesbian (n = 12) and bisexual (n = 4) grandmothers recruited by local networks using snowball techniques. The study featured open-ended recorded, transcribed interviews lasting up to 120 minutes discussing the centrality of sexual orientation in the grandparent–grandchild relationship, including the role of grandparenthood for LB women, the formation of LB identity as a grandparent, the role of homonegativity, and the mediating role of the parents in the grandparent– grandchild relationship.
In a similarly qualitative manner, Fruhauf and colleagues (2009) explored the experiences of 11 gay grandfathers in western and Midwestern states. These interviews focused on coming out to grandchildren, the nature of the tie to the grandchild, and the role of adult children in the coming out process of the grandfather, along with associated fears of rejection. These examples stand at the forefront of a rich but as yet largely unexplored field of inquiry.
Among LGBT elders, social support networks have been shown to be associated with physical health (Grossman, 2006; Masini and Barrett, 2008). One source of support for LGBT individuals, including LGBT elders, is families of choice. Beeler and colleagues (1999) found that 89 percent of the older gay male and lesbian adults in their sample (n = 160, ages 45–90) had at least three friends they could turn to if they were experiencing a “serious problem.” Nearly two-thirds (64 percent) of the 1,200 LGBT participants (aged 45–64) in the national MetLife (2010) survey agreed they had a “chosen family,” defined by the survey as “a group of people to
whom you are emotionally close and consider ‘family’ even though you are not biologically or legally related.”
Given that these families of choice are often made up of friends, it is not surprising that friendship has a particularly complex and broad-based meaning for LGBT older persons. This observation is reflected in the thematic content analyses of the 53 gay men and lesbians interviewed by de Vries and Megathlin (2009) as compared with those of 106 heterosexual women and men, all aged 50–88 and recruited primarily through snowball techniques in the San Francisco Bay Area. In the MetLife (2010) study, older LGBT individuals were more likely than the heterosexual comparison group to report receiving emotional support from friends, living with friends, discussing end-of-life preferences with friends, and depending on friends as caregivers.
When de Vries and Hoctel (2006) conducted in-depth individual interviews on the meaning and experience of friendship in the San Francisco Bay Area, the majority of respondents reported feeling that friendships are more important to gay men and lesbians because their friends, for various reasons, become their family. For example, one man said, “I think for gay people—many of whom are disowned by their families because of their sexual orientation—their friendships are stronger” (p. 227). A woman noted, “So many of us have lost our original families—particularly older people, because of our sexuality. We need each other in a way that heterosexuals don’t. We’ve led a life of nobody being there” (p. 227).
In the MetLife (2010) survey, LGBT participants (n = 1,201) aged 45–64 were slightly more likely than non-LGBT persons to have provided care to an adult friend or relative in the past 6 months (21 percent versus 17 percent). In the same survey, men were just as likely to be caregivers as women. Male caregivers actually reported more time spent as caregivers than their female counterparts.
Caregiving is an area in which large numbers of midlife and older gay men and lesbians have had significant experience: particularly in the early years of the AIDS epidemic, the provision of care for someone dying of AIDS was often the responsibility of members of the LGBT community (e.g., Mullan, 1998). Martin and Dean (1993) note that two important aspects of the epidemiology of AIDS-related bereavement are the experience of multiple losses and the occurrence of chronic bereavement. They found that almost 30 percent of their sample of bereaved gay men (n = 200) had experienced two or more deaths (of lovers, former lovers, or close friends) within a 12-month period (in 1987), and nearly half of the sample had experienced three or more deaths (not including deaths of social network members, acquaintances, or friends of friends). Such experiences may well both serve as a model for support in the later years and place some elder
gay men (and perhaps LGBT persons in general) at risk for having outlived their networks of support.
Another aspect of social support is group membership. In the research of Grossman and colleagues (2000), LGB persons aged 60 and older belonged to many LGB organizations: about one-quarter (26 percent) belonged to one organization, 26 percent to two, 19 percent to three, and 20 percent to four or more. When asked about the number of LGB organizations whose events they regularly attended, 12 percent of respondents said none, 38 percent said one, 29 percent said two, 13 percent said three, and 8 percent said four or more.
Older LGBT adults participating in focus groups reported unanimously that their membership in the LGBT community was important, especially in helping them be comfortable with their sexual orientation (Shippy et al., 2004). Results of the MetLife (2010) survey were similar, with one exception: although 47 percent of lesbians, 44 percent of gay men, and 39 percent of transgender individuals said their LGBT identity was important to them, only about 25 percent of bisexuals said being LGBT was important in how they think about themselves.
Although the committee could find no published research describing the family relationships of transgender persons, Witten (2002) notes that family relationships (encompassing the full breadth of relationship types, including spousal, parenthood, grandparenthood, sibling, and other ties) may be reevaluated during and following an older person’s “coming out” with a transgender and perhaps different gender identity. This observation raises the issue of relational quality and its effect on the well-being of older LGBT adults: What is the utility of relational ties in addressing the health-related needs of LGBT elders? The answer to this question is unknown, and this is a central issue meriting future research.
A host of older studies have drawn attention to the losses of loved ones to AIDS as endured by LBT and especially gay men during the 1980s and early 1990s and the enduring legacy of such trauma. Martin and Dean (1993) compare these AIDS-related loss experiences with “previously studied stressors, such as the experiences of concentration camp survivors and soldiers in combat” (p. 323). Schwartzberg (1992) notes the breadth and depth of experienced grief, writing that “survivors [grieve] not only for their most personal losses, but also for all the victims, for strangers, and for the loss of community and culture” (p. 424). This remains a context within which to consider the experiences of midlife and older LGBT persons and their approaches to their later and final years (de Vries, 2008). In a qualitative and observational report, Shernoff (1998) notes that gay widowers
shared many of the same attributes and experiences as other widowers; he also cites unique characteristics, most of which he attributes to the lack of recognition of male couples in general and of the status of a gay man as widower in particular.
The MetLife (2006) study also inquired about end-of-life issues. Just over half of the study’s 1,000 LGBT participants aged 40–61 had not yet prepared living wills or advance health care directives, documents spelling out the health care decisions they would want made for them should they become incapacitated. Only about two in five (43 percent) had assigned someone else decision-making authority through a legal document such as a durable power of attorney for health care or a health care proxy. For LGBT individuals, these legal and financial preparations for the end of life may be even more important than for heterosexual people, given the absence of legally recognized relationships and the greater reliance on “chosen families” who often are not recognized by health care institutions. Drawing on the MetLife (2006) data set, de Vries and colleagues (2009) found that older lesbian and gay adults (of any relationship status) residing in states in which same-sex relationships are not recognized were more likely to have prepared a will, living will, and durable power of attorney than participants residing in states in which such relationships are recognized. Similarly, those living in states with no recognition of same-sex relationships also expressed greater fear of dying in pain and being the object of discrimination because of their sexual orientation than those residing in states where same-sex relationships are recognized. State recognition was the only significant predictor of fear of dying alone in these analyses.
Riggle and colleagues (2005) studied the execution of five legal documents, including a will, living will, and durable power of attorney, as well as power of attorney for finances and hospital visitation authorization, among almost 400 LGBT adults. The sample included participants up to age 73, although the data were not analyzed with respect to age ranges. The authors found that, compared with single LGBT individuals, a higher percentage of LGBT couples had completed such documents. They interpreted these differences as reflecting an effort to formalize commitment in the couples’ relationships and as associated evidence of their heightened awareness of legal status, rights or the absence thereof, and options.
SUMMARY OF KEY FINDINGS AND RESEARCH OPPORTUNITIES
Issues related to LGBT aging have not been well studied. From the limited research available, however, some key findings pertinent to this cohort can be drawn, which are presented below.
Mental Health Status
Depression levels and suicidality appear to be elevated among older lesbians and gay men. Less research has been conducted in this area among bisexual and transgender elders.
Physical Health Status
It appears that rates of hysterectomy, oral contraceptive use, and hormone replacement therapy may be similar for lesbians, bisexual women, and heterosexual women.
Lesbians and bisexual women may have higher rates of breast cancer than heterosexual women.
Data on whether lesbians have a higher risk for cardiovascular disease are conflicting.
Limited research suggests that transgender elders may experience negative health outcomes as a result of long-term hormone use.
HIV/AIDS impacts not only younger but also older LGBT individuals. However, few HIV prevention programs target older adults, a cohort that also has been deeply affected by the losses inflicted by AIDS.
Disability among LGBT elders is a topic rarely considered in research.
Risk and Protective Factors
LGBT elders experience stigma, discrimination, and victimization across the life course.
Little research examines violence experienced by LGBT elders, but some studies suggest that LGBT elders report high rates of lifetime experiences with violence.
Some research suggests that, compared with their heterosexual counterparts, LGB elders may have higher rates of tobacco and alcohol use. Research on tobacco and alcohol use among transgender elders is largely lacking.
There is some evidence of crisis competence (resilience and perceived hardiness) within older LGBT populations; however, this concept is not yet well understood and has not been thoroughly researched.
Very limited data suggest that education may play a protective role in the lives of some older LGBT people.
Limited research suggests that LGBT elders may be less likely to seek health services than the general population.
Some research suggests that older LGBT individuals do not believe they will receive respectful care in old age and may delay seeking care for fear of discrimination.
Long-term care for LGBT elders has not been the subject of many empirical studies.
Research on the influence of sociodemographic characteristics on the health of LGBT elders is very limited.
The role of families in the lives of older LGBT people has been underresearched. Lesbian and gay elders are less likely than their heterosexual peers to have children, and their other kinship ties are not well understood. Families of choice appear to be a source of support for LGBT people in later life.
While the above findings provide some information on the health status of LGBT elders, there is a dearth of data on a number of topics in this area. Even among the studies that exist, lesbians, gay men, bisexual men and women, and transgender people are not equitably represented. Very little is known about transgender and bisexual aging in particular. Similarly, more research has focused on the first part of later life, while almost no published research exists on LGBT populations aged 85 and above. In studies whose participants represent a wide range of ages, age is rarely considered as a factor. Thus, while the potential exists to better understand this cohort, researchers often miss this opportunity by failing to include age as a variable. Both cross-sectional and longitudinal research is especially needed to explore the demographic realities of LGBT aging in an intersectional and social ecology framework, to allow an understanding of the mechanisms of both risk and resilience in LGBT elders, and to identify appropriate interventions for working effectively with this cohort. These parameters could be brought to bear in research in the following areas:
Demographic and descriptive information, including the percentage of elders who are LGBT and how that percentage varies by such demographic characteristics as race, ethnicity, socioeconomic status, geography, and religion; also, the general experiences and health status of older LGBT adults and how these vary by demographic characteristics, the percentage of LGBT elders who are parents, and the trajectory of LGBT identity and experiences (particular bisexual identity) over the life course.
Family and interpersonal relations, including the experience of LGBT aging and family life (e.g., experiences with biological kin across generations, “chosen family” ties and relations), the effect of the greater likelihood of childlessness (particularly among older gay men), and experiences of grief and loss (including multiple losses); also intrafamily and domestic violence (e.g., caregiver/provider abuse, intimate partner violence) and anti-LGBT victimization.
Health services, including barriers to access (particularly related to identity disclosure and interactions with providers), utilization rates, long-term care issues for older LGBT persons, quality of care received, and end-of-life issues (e.g., preparations, fears, and plans).
Mental health, including depression and suicidality (about which little has been written), the effects of stigma and discrimination (over the course of a lifetime), and the experience of and preparations for late life among older LGBT persons.
Physical health, including cancer rates, risks, and treatment (particularly for prostate cancer among older gay and bisexual men and transgender women and anal cancer among older men who have sex with men); the effects of long-term hormone use among older transgender persons; and the effects of disabilities among older LGBT persons.
Sexual and reproductive health, including HIV rates and interventions (and the experience of aging with HIV) and sexual well-being and sexual dysfunction (particularly among older lesbians and transgender elders, about whom little is known).
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