73: Meeting the Unique Needs of LGBT Older Adults

Older adults who are lesbian, gay, bisexual, or transgender (LGBT) are a vulnerable group with specific health care needs that are largely unrecognized. Health care professionals and society in general too often fail to address the sexuality, and sexual orientation, of older adults. However, LGBT older adults are also much more likely than other generations of LGBT adults to hide their sexual orientation, as a result of a lifetime of experiencing discrimination from a society that has only recently evolved to become more accepting of homosexuality.

The general LGBT population is affected by health disparities, and as such, has higher rates of common and life-threatening physical and mental health conditions, and these disparities carry over into older years as well. Older LGBT adults continue to be affected by unequal treatment and ongoing social stigma, which we explore in this chapter. This chapter also describes specific health concerns related to LGBT aging, in addition to psychosocial concerns that are of tremendous importance.

Homosexuality is an orientation toward people of the same gender in sexual behavior, affection, attraction, and/or self-identity. Bisexuals have an orientation toward people of both genders. Transgender includes people whose gender identity and expression do not match, including transsexual, transvestite, androgyne, and intersex individuals; they may or may not also consider themselves homosexual or bisexual.

It is important to note that sexual orientation is much more than just sexual behavior. For instance, some who have same-sex attractions may never engage in same-sex behavior, and those who engage in same-sex behavior may not identify as being homosexual. For some people, sexuality is more fluid, and so sexual orientation may change over time. This may also be more prevalent in older generations who felt the need to hide their sexual orientation, thus “staying in the closet,” by pretending to be heterosexual in order to avoid discrimination and rejection. “Coming out of the closet” refers to the process of disclosing that one identifies as LGBT, and for many, this is a life-long process. As described below, this process has been especially difficult for the older LGBT population.

Demographics

It is difficult to determine the number of LGBT Americans older than age 65 years because of the lack of reliable statistics, and major challenges recording such statistics such as unwillingness to report sexual orientation, but the best estimates are 1–3 million, based on a range of 3% to 8% of the general population being LGBT. By 2030, there will be an estimated 2–6 million older LGBT Americans. U.S. census data from 2000 and 2010 showed that same-sex–headed households existed in >90% of all counties, and that more than 1 in 10 same-sex couples included a partner older than age 65 years.

History of Stigma and Prejudice Linked to Issues of Coming Out and Disclosure

Older LGBT adults came of age during a time in the United States when being LGBT was viewed in an especially negative light. This group of older adults is divided into 2 cohorts, depending on whether they came of age before or after the Stonewall Riots of 1969, which were demonstrations that are considered to be the beginning of the gay civil rights movement in the United States. The current older, pre-Stonewall generation grew up in a society with widespread and accepted discrimination against LGBT persons, and lived most of their lives in a society where the expression of their sexual orientation was criminalized by the government and pathologized by the medical community. For instance, it was not until 1962 that the first state decriminalized private, consensual homosexual acts, and it was not until 1973 that the American Psychiatric Association stopped designating homosexuality a mental disorder that could be treated and cured. Society’s views of homosexuality did not begin to change until the late 1960’s and 1970’s. In contrast to the pre-Stonewall generation, the Stonewall generation of LGBT baby boomers, those currently in their 50s or 60s, came of age during the social unrest of the 1960s and a time of rising social acceptance of LGBT people. And still, a 2006 survey of LGBT baby boomers found that the greatest concern of aging was facing discrimination related to sexual orientation.

The overt discrimination experienced during the pre-Stonewall period severely inhibited the pre-Stonewall generation from coming out as young adults and being out in old age. Thus, they are much more likely to have kept, and continue to keep, their sexual orientation hidden. In contrast, LGBT baby boomers are more likely to be at least partly open about their sexual orientation, with 76% of lesbians and 74% of gay men in 2009 reporting that they were mostly or completely “out of the closet.”

Although the climate has changed considerably in the decades since Stonewall, the more persons experienced homophobia as young adults, the less likely they are to be out to their physicians. Studies suggest that discrimination and stigmatization can be associated with lower life satisfaction, lower self-esteem, depression, suicide, substance abuse, and unhealthy and risky behavior. Nondisclosure of sexual orientation may also lead to delay in care, inappropriate care, and prevent the development of a trusting provider–patient relationship.

Patient–Provider Communication

Health care providers should provide culturally competent care that creates the optimal environment for the respectful care of LGBT older adults. All health care providers should ask their older patients about their sexual health, including sexual orientation, while also keeping in mind that LGBT older adults may be unwilling or psychologically unable to disclose their sexual orientation. The intention of asking about sexuality is not to force disclosure of sexual orientation, but rather, to provide an opportunity, and a safe and supportive environment, to come out of the closet if desired. Studies show that poor relationships with providers and mistrust of others in the medical field were some of the reasons why homosexuals, especially lesbians, do not receive appropriate preventive care. This sentiment was also demonstrated in a survey of LGBT baby boomers, where less than half expressed strong confidence that health care professionals would treat them with dignity and respect because of their sexual orientation. Local LGBT centers of the clearinghouse at Services and Advocacy for LGBT Elders (http://www.lgbtagingcenter.org) and the Gay and Lesbian Medical Association website (http://www.glma.org) are good sources of information in finding welcoming providers. Table 73–1 lists additional resources.

Research on health maintenance and medical issues for older LGBT adults is unfortunately limited. There are certain issues that require particular attention in LGBT patients because of health disparities that affect this group (Table 73–2). In addition, older LGBT people may be more susceptible to mental health disorders as a result of the stresses associated with long-term concealment of sexual identity, many years of exposure to discrimination, and greater risk of inadequate support.

Health Issues for Older Gay and Bisexual Men

Sexual health (function, activity, and safer sex methods) should be discussed with older gay and bisexual men so as to assess for and reduce the risk of sexually transmitted diseases. Although the Centers for Disease Control and Prevention (CDC) currently recommends routine HIV testing for all people younger than age 65 years, it is important to consider testing in any sexually active person at any age, especially in the presence of risk factors. Human papillomavirus (HPV) screening should also be offered to men who have sex with men in the form of a routine anal pap smear every 2–3 years, especially in men who have unprotected receptive anal intercourse, or who have HIV, to screen for early signs of precancerous cells caused by certain strains of the HPV virus that can lead to anal cancer.

Younger gay and bisexual men are more likely to smoke cigarettes, and while older gay men appear to have similar rates of smoking compared to heterosexuals, the effects of previously higher rates of smoking in this group may continue to be a risk factor for cardiovascular disease, including stroke and heart attacks. There are also several cancers which may be more common among gay and bisexual men. These include anal cancer, caused by the human papillomavirus; lung cancer caused by smoking; colon cancer, perhaps attributable to reduced rates of screening; liver cancer related to an increase in hepatitides B and C infections.

Older Lesbian and Bisexual Women’s Health

There is good evidence that lesbians receive less preventive care, access health care services less often, and enter the health care system later, than heterosexual women. Most of the health disparities experienced by women who have sex with women relate to difficulty in accessing the health care system, which in part is due to prior discrimination or fear of being treated poorly as a result of being lesbian/bisexual. Lesbians have lower rates of Pap screening and mammograms as compared to heterosexuals. In addition, older lesbians and bisexual women should be counseled on safer sex practices and engaged in conversations about sexual health and function. Sexually active lesbians and bisexual women should be screened for cervical cancer, domestic abuse, and sexually transmitted infections. Clinicians should avoid assuming heterosexuality of older patients, and keep in mind that some women are or have been sexually active with both men and women, even if they identify as “straight” or lesbian. Also keep in mind that sexual identity and behavior can change over time, and that many lesbians have had children and grandchildren from heterosexual or homosexual relationships.

Lesbian and bisexual women may be at an increased risk of heart disease because of higher rates of risk factors for cardiovascular disease, such as cigarette smoking and obesity. On average they have a higher body mass index (BMI) than their heterosexual counterparts. They may be at greater risk of cervical and breast cancer as a result of decreased access to screening. Because of increased smoking rates, lesbian and bisexual women may also have greater risk of lung cancer.

Older Transgender Health

Although there has been little research on the health issues of older gay and lesbian patients, there are even fewer studies on transgender health, and the particular challenges of caring for older transgender patients. As transgender adults age, they may encounter health issues that correspond to their biologic sex, leading to additional stress as they cope with a disease or condition associated with the gender they have left behind. Appropriate health screenings for the birth gender is important preventive care for transgender patients. Disease prevention and health education are key for transgender patients, who are often marginalized by society. Prejudice remains a major barrier to appropriate health care for transgender adults. Many lack health insurance or have insurance programs that do not cover health care related to transgender issues, including hormone treatment. The consequence is that many transgender adults use “black market” hormones, lack preventive care, and do not have their mental health needs addressed. Rates of HIV and viral hepatitis infections, as well smoking and substance abuse, are higher in this group compared with the LGB community and heterosexual counterparts. The University of California San Francisco’s Center of Excellence for Transgender Health is a rich resource for the care of transgender folks, and provides a primary care protocol, including recommendations for general prevention and screening. For example, they recommend routine mammogram screening in transwomen (MTF: male-to-female transgender persons) older than age 50 years with additional risk factors (estrogen and progestin use >5 years, positive family history, or BMI >35).

Mental Health

There is a link between mental health and health disparities. Communities that suffer health disparities are more likely to have higher rates of mental health issues, particularly depression and anxiety. Older LGBT people who have lived in the closet for much of their lives can have significant stress, loss of self-esteem, and less-fulfilled lives. Trying to manage stigma, marginalization, and self-esteem, can lead to higher rates of depression, suicide, risky sexual behavior, and substance abuse. More research is needed regarding the prevalence of mental health disorders in LGBT older adults. Older LGBT adults appear to have elevated levels of current or lifetime depression, with rates possibly being the highest among transgender people. Very little research has explored mental health problems in transgender adults; what is known is that they have experienced a major life change and many have faced tremendous discrimination. They are more likely to have adjustment disorders, anxiety disorder, posttraumatic stress disorder, depression, and substance abuse.

HIV in Older Adults

Although the topic of HIV is covered in Chapter 47, “Common Infections,” it is worth noting that there is not only an increasing prevalence of older adults living longer with HIV, but also an increasing incidence of new HIV infections in older adults. More than 37% of all those infected with HIV in the United States are older than age 50 years, and by 2015, more than half will be older than age 50. More than 17% of new HIV infections occur in older patients, and men who have sex with men remain a large percentage of those infected. Minorities with HIV/AIDS have higher mortality rates: the death rates are 5 times higher among older Hispanics, and 12 times higher in older blacks. Health care providers need to better educate older patients about safer sex, and also need better detect and screen for HIV in older adults. The HIV and Aging Consensus Project is a resource for suggested treatment strategies for caring for older adults with HIV/AIDS.

Social Supports and Family Structure

The social support structures of LGBT older adults tend to be different from those of older adults in the general population. Whereas older adults in the general population tend to rely on spouses and adult children as part of a network of support that is able to meet an older individual’s psychosocial and caregiving needs, LGBT older adults are more frequently socially isolated and may rely on informal networks for their social needs.

There are several reasons for this social isolation: LGBT older adults are less likely to be partnered, less likely to have children, and more likely to live alone. Also, lack of societal acceptance can lead to estrangement from biologic family members, like former spouses or adult children. Because of this, LGBT older adults are more likely to rely on informal “families of choice,” comprised of extensive networks of friends. Even though these informal networks can be a great asset, they also have some disadvantages. For example, these networks can deteriorate over time as a consequence of the effects of aging and poor health on the stability of the support network, putting the LGBT senior at further risk of isolation. As a result of these informal networks, it is imperative that clinicians carefully document patient choices for surrogate decision makers, who may often be a person that is not the legal default next-of-kin (see “Visitation Rights and Advance Care Planning” below on advanced care planning for LGBT older adults).

Housing and Long-Term Care

Antidiscrimination laws in housing do not extend themselves to LGBT persons. Neither do patterns of spousal inheritance apply for same-sex spouses in most states. If legal provisions are not made through wills and trusts, inheritance of home ownership may bypass a surviving partner and go to the deceased partner’s heirs. Legal planning is necessary to secure housing for a surviving partner.

Entering a long-term care facility is a particularly vulnerable and potentially dangerous time for this population. There is a significant amount of real or feared discrimination, from both the staff and the other residents. By 2030, there will be an estimated 120,000–300,000 older LGBT adults living in nursing homes. A 2005 study found that 73% of LGBT adults believed that discrimination exists in retirement settings, 60% believed that they would not have equal access to social and health services, and 34% believed that they would have to hide their orientation upon entry into a retirement facility. Fear of disclosure is a significant and unique concern of LGBT seniors who are entering long-term care facilities, and concealing one’s identity and key relationships may prevent them from receiving appropriate care, threaten the ability to make meaning of one’s life, and can be very damaging to one’s personal identity and emotional, psychological, and physical well-being. Home care agencies and long-term care facilities are making strides in becoming more inclusive of the LGBT community, but more awareness and training is needed. Specific training in these areas is increasingly available, for instance, the LGBT Aging Project (http://www.lgbtagingproject.org/).

Policy Issues Affecting LGBT Older Adults

LGBT elders face many policy challenges to their financial well-being. Some of the challenges derive from their frequent reliance on nontraditional family structures, but many exist because of unequal treatment reflected in laws and regulations. As of this publication, many states and the District of Columbia now recognize same-sex unions; however, the majority of states still do not offer same-sex couples any recognition, thus denying them the scores of protections given to married couples in their jurisdictions. In June 2013, the United States Supreme Court overturned sections of the Defense of Marriage Act (DOMA) that prohibited the federal government from recognizing same-sex marriages performed in the states. With this, same-sex couples that are married in states where there is marriage equality are able to enjoy federal benefits of marriage such as inheritance, tax, social security, and immigration benefits. Notwithstanding, same-sex couples are only able to access those benefits if they marry in jurisdictions were same-sex marriage is legal.

Visitation Rights and Advance Care Planning

Because of the lack of policy recognition for LGBT couples by most states, long-term partners may be seen as “legal strangers” in situations of illness and disease by their health care providers. This often has the practical effect of taking decision-making powers away from “families of choice,” and giving them to blood relatives whose relationships with LGBT patients may not be as close, and who may not be as accepting of their relative’s homosexuality. Up until 2011, hospital staff in most U.S. states could refuse visitation rights for a sick partner and limit visitation to only family members, choosing to ignore same-sex partners if their relationship were not legally recognized by their state. However, President Obama issued an executive order which took effect January 2011, mandating that all hospitals extend visitation rights to the partners of gay, lesbian, bisexual, and transgender men and women.

Documenting advance health directives is one of the strategies that older LGBT adults can pursue to ensure that their wishes are respected in the health care setting. Through a living will, a person may declare their preferences for their end-of-life care. The main disadvantage of relying solely on this document is that it will not designate a surrogate decision maker, and therefore the desired surrogate decision maker may not be allowed to make decisions for an LGBT patient if not specifically documented. Therefore, drafting a document which specifically designates an alternative decision maker in the case of incapacity is critically important to ensure that LGBT couples can legally safeguard their choice of decision maker (they are named differently in different states, eg, “health care proxy” or “durable power of attorney for health care”; see Chapter 12, “Ethics & Informed Decision Making,” for more information on surrogate decision makers and advanced care planning).

At least 3% to 8% of older adult patients are LGBT, and these persons have specific medical, psychological, and social needs. Health care providers must be sensitive to the specific challenges faced by this group, and provide the appropriate support and resources that address their needs. For additional resources to aid the provider in caring for older LGBT patients, see Table 73–1. Many older LGBT adults have faced a lifetime of discrimination and health disparities, and health care professionals should consider this when providing appropriate and compassionate care to this vulnerable group. As with all cross-cultural topics, one should not assume that the negative experiences and health disparities described in this chapter are automatically true for every individual LGBT older adult, as there are certainly examples of happy, healthy, and successful individuals who are all the more remarkable for having overcome significant obstacles to live enriched and inspiring lives.