INTRODUCTION
In the United States, an estimated 85 percent of all elder care is provided on an informal, that is, unpaid basis, mostly by younger relatives.Footnote 1 Valued at approximately $522 billion annually, informal elder care is the mainstay of US aging policy.Footnote 2 As the baby boom generation ages, however, the relative number of available family caregivers will decrease significantly.Footnote 3 The result will be a serious gap in elder care that will strain family resources and social programs. When addressing this challenge, it is imperative to identify policies that support existing patterns of informal caregiving, but it is also important to ask the larger question of why individuals assume caregiving responsibilities in the first place. By understanding these motivations, it may be possible to develop policies that will encourage others to take on the mantle of caregiver while expanding and strengthening the widely held values of community and fellowship.
Naomi Cahn and Amy Ziettlow asked the larger question in their groundbreaking study of adult children who had provided care for their parents.Footnote 4 In “The Honor Commandment: Law, Religion, and the Challenge of Elder Care,” Cahn and Ziettlow discuss the results of this study and make a number of valuable recommendations for policy reform.Footnote 5 Notably, they report that the honor commandment resonated strongly with the adult children they interviewed independent of any legal obligation to provide care.Footnote 6 Indeed, the intergenerational reciprocity at the heart of the honor commandment characterizes the vast majority of informal elder care in the United States.Footnote 7 More than 70 percent of all unpaid caregivers provide care for older relatives who are age fifty or older.Footnote 8 Adult children caring for their parents and parents-in-law represent more than one half of all informal elder care.Footnote 9 Accordingly, the lived experience of nearly 24 million Americans reflects the ethic that families should honor their elders.Footnote 10
Caregiving within the lesbian, gay, bisexual, and transgender, or LGBT, community follows a very different pattern. LGBT older adults who are age fifty or older largely care for each other. Spouses, partners, and friends provide almost 90 percent of the care received by older LGBT adults, and adult children provide only 3 percent of the care.Footnote 11 To put this in perspective, spouses and partners in the LGBT community perform nearly five times as much care for individuals aged fifty and older as they do in the wider population, and friends and other non-relatives perform almost two and a half times as much care.Footnote 12 The increased caregiving by spouses and partners may not be surprising given that providing care to a spouse or partner embodies the bonds and promises inherent in a long-term romantic partnership.Footnote 13 LGBT older adults are also significantly less likely to have children than are their non-LGBT peers, meaning that fewer adult children are available to provide care.Footnote 14 However, the extent of caregiving provided by non-relatives in the LGBT community is remarkable precisely because it exists outside the bonds of marriage or obligations of family. It is also largely performed by peers and, therefore, lacks the intergenerational imperative of the honor commandment.Footnote 15
This article explores the high level of caregiving by non-relatives in the LGBT community.Footnote 16 It asks what motivates friends, neighbors, and community members to volunteer and provide care for someone whom the law considers a legal stranger. It also asks what steps policy makers can take to facilitate and encourage this type of caregiving.Footnote 17 Finally, it asks what lessons can be learned from LGBT older adults about the nature of both caregiving and community. Certain demographic and societal pressures have given rise to the distinctive pattern of elder care among LGBT older adults. The prevailing ethos of care emanates from a strong sense of shared identity and belonging. It reflects the importance of “chosen family” in the lives of LGBT older adults, who often rely primarily on friends for emotional, financial, and physical support. As the aging population becomes more diverse,Footnote 18 aging policies will have to become more inclusive to address the differing needs of various communities, including LGBT older adults. However, the potential lessons learned from the pattern of elder care in the LGBT community extend far beyond a simple commitment to diversity.
The first part of this article describes the current cohort of LGBT older adults, including the historical and demographic factors that have contributed to the emergence of chosen family. It also addresses the lingering effects of pre-Stonewall views on homosexuality and gender that make LGBT older adults less likely to access supportive services and increases the need for informal care.Footnote 19 The second part examines the emergence of chosen family as a building block of the LGBT community and discusses the current pattern of informal elder care among LGBT older adults. Part three addresses needed policy reforms, including broad-based nondiscrimination laws, increased recognition for chosen family, and cultural competency training. It also notes that advance planning remains the most important step that LGBT older adults can take to memorialize their wishes and protect their chosen family. The conclusion recognizes that the experience of aging will likely change for future generations of LGBT older adults who have been able to reap the benefits of marriage equality and greater social acceptance, but it suggests that the current pattern of elder care in the LGBT community may offer important insights that could help bridge the looming elder-care gap.
LGBT OLDER ADULTS
The U.S. Administration on Aging estimates that there are between 1.75 and 4 million LGBT Americans who are aged sixty or older.Footnote 20 This number will increase significantly as the baby boom generations ages and the senior population more than doubles by 2060.Footnote 21 Today's LGBT older adults have exhibited great resilience. They are long-term survivors of homophobia and transphobia. They came of age at time when homosexuality was criminalized and gender variance was strictly policed.Footnote 22 Many of them were young adults during the period when homosexuality was pathologized as severe mental illness.Footnote 23 They created chosen family and community in the face of rejecting families and a hostile society.Footnote 24 They were on the vanguard of the contemporary LGBT rights movement.Footnote 25 These experiences, however, have also contributed to certain demographic patterns and behaviors that can compromise healthy aging. Although legal reforms and increased social acceptance will undoubtedly improve the aging experience for future generations of LGBT older adults, in many ways, the current generation of LGBT older adults continues to shoulder the weight of pre-Stonewall views on homosexuality and gender variance.
This section explains how these demographic factors and disparities influence informal elder care in the LGBT community. It also explores two related issues that impair the willingness of LGBT older adults to access aging services: the fear of encountering anti-LGBT bias and the pressure to conceal their LGBT identity.
Demographics and Disparities
Studies have established that LGBT older adults are much more likely than their non-LGBT peers to be single and to live alone.Footnote 26 They are also much less likely to have children.Footnote 27 It is common for LGBT older adults to be estranged from their family of origin, thus leaving many of them without family at least in the traditional sense.Footnote 28 These demographic factors place LGBT older adults at a disadvantage when attempting to navigate the aging process and increase their risk for social isolation and neglect.Footnote 29
LGBT older adults also experience significant financial and health disparities that can impede healthy aging and exacerbate the need for informal caregiving. LGBT older adults report much higher rates of disability, with nearly one-half of all LGBT older adults aged fifty and older reporting a disability.Footnote 30 In the general population, this rate is comparable to the prevalence of disability among individuals seventy-five years of age and older.Footnote 31 LGBT older adults also experience high rates of chronic health conditions and report higher rates of mental stress than their non-LGBT peers.Footnote 32 For example, the rate of depression among LGBT older adults is more than four times that of the wider population.Footnote 33 They also report higher rates of loneliness, anxiety, and suicidal thoughts.Footnote 34 Nearly one in four LGBT older adults reports that he or she has seriously considered taking his or her own life.Footnote 35 In terms of financial security, Census data on same-sex partnered households shows that they lag behind different-sex married households on all major economic indicators.Footnote 36 Older female same-sex-partnered households are almost twice as likely to live below the poverty level as older different-sex-married households.Footnote 37
Studies have also identified a number of points of resilience that may help LGBT older adults address some of these challenges. For example, an overwhelming majority of LGBT older adults report that they feel good about being part of the LGBT community.Footnote 38 They also regularly engage in wellness activities and moderate physical activity.Footnote 39 Close to one in four LGBT older adults attends religious services or spiritual activities on a regular basis.Footnote 40 LGBT older adults are also more likely than their non-LGBT peers to have engaged in advanced planning by executing legal documents, such as wills and durable powers of attorney.Footnote 41
Anti-LGBT Bias
Over the course of their lives, LGBT older adults have experienced an alarmingly high incidence of victimization and discrimination.Footnote 42 More than eight out of ten LGBT older adults report at least one incident of victimization, and more than half report being discriminated against in employment or housing on account of their sexual orientation or gender identity.Footnote 43 Given this history, it is not surprising that LGBT older adults frequently express concern that they will encounter anti-LGBT bias in the areas of housing, health care, and aging services.Footnote 44 According to a large nationwide survey, the number one priority for LGBT older adults is to increase the availability of LGBT-friendly senior housing where they will not have to hide their LGBT identities.Footnote 45
The concern over encountering anti-LGBT bias increases the demand for informal caregiving because LGBT older adults will go to great lengths to avoid entering senior housing and are often determined to “age in place” at all costs.Footnote 46 They are also less likely to access supportive services designed to assist individuals who are aging in place, such as home health aides.Footnote 47 Understandably, they do not relish the idea of potentially inviting a bigot into their home, especially when they may be at their most vulnerable.
Studies suggest that the fear expressed by LGBT older adults is not misplaced. In the aging and health care context, LGBT older adults have reported incidents of anti-LGBT bias at the hands of service providers that range from simple ignorance to outright hostility and violence.Footnote 48 Health care providers sometimes fail to respect partners or other chosen family and instead defer to the wishes of next of kin.Footnote 49 LGBT older adults have reported incidents in which facilities have separated partners.Footnote 50 Long-term care facilities have required transgender residents to wear gender-inappropriate clothing, and staff members have persisted in addressing transgender residents by the wrong name and incorrect pronouns.Footnote 51 LGBT older adults report that some health care workers refuse to provide intimate care, openly expressing distaste over having to touch an LGBT person.Footnote 52 Religiously motivated workers have been known to harangue LGBT elders who are in their care and urge them to repent before it is too late.Footnote 53 Non-LGBT residents represent another source of anti-LGBT bias and sometimes engage in shunning and bullying behaviors.Footnote 54
In a 2007 article, the New York Times reported a particularly egregious practice where long-term care facilities will move residents who are perceived to be LGBT to secure “memory” or dementia wards in response to complaints from other residents or their families.Footnote 55 The article reported an instance where an older gay man was wrongfully confined to a dementia ward and eventually committed suicide.Footnote 56 The following year, Sonoma County, California, used a secure “memory” ward to separate long-time partners Harold Scull aged eighty-eight and Clay Greene aged seventy-six.Footnote 57 Although Scull and Greene were not registered domestic partners under California law, they had taken steps to secure their relationship by executing reciprocal wills and durable powers of attorney—documents that the county allegedly disregarded.Footnote 58
The long-time partners came to the attention of the county when Greene called 911 after Scull fell on the front porch steps of their home.Footnote 59 The emergency medical team that responded immediately took both men into care and separated them, citing neglect and possible abuse.Footnote 60 Without the necessary medical screening and against his will, Greene was placed in a secure facility for individuals with dementia.Footnote 61 Scull died alone four months later.Footnote 62 Greene continued to be held in the secure facility until early 2009, when his court-appointed attorney was finally able to secure his release.Footnote 63 In 2010 Sonoma County settled a suit brought by Scull's estate and Greene that had claimed the county's actions were motivated by antigay bias.Footnote 64 According to his attorney, Greene remains worried that county workers will come to his home and harm him.Footnote 65
The Costs of Concealment
When many members of the current generation of LGBT older adults were growing up, there was no concept of “coming out” to family and friends because disclosure could result in involuntary institutionalization.Footnote 66 Concealing one's identity—being “closeted”—was simply a way of life, a matter of survival.Footnote 67 As one researcher observed, today's LGBT older adults are “the last generation to have lived their adolescence and young adulthood in hiding.”Footnote 68 Even with the increasing social and legal acceptance of LGBT individuals, some LGBT older adults have never chosen to be “out” and have remained closeted about their LGBT identity to all but a few close friends.Footnote 69 Other LGBT older adults, especially those who are members of the baby boom generation, have lived openly but now report a strong pressure to “re-closet” as they age.Footnote 70 Reflecting on his future, one openly gay man explained, “as strong as I am today … when I am in front of the gate of the nursing home, the closet door is going to slam shut behind me.”Footnote 71
Today, relatively few LGBT older adults are completely closeted. In a large nationwide study, more than nine out of ten LGBT older adults responded that they were open about their identity to at least one close friend.Footnote 72 However, large percentages of LGBT older adults still report that they are closeted in other aspects of their lives. For example, only slightly more than one-half of the respondents reported that they had been out to their father.Footnote 73 In the wider community, almost one-third were closeted in their last job, one-third are not out to any of their neighbors, and over one-quarter are not out in their faith communities.Footnote 74 Over one-fifth of LGBT older adults are not out to their primary care physician.Footnote 75 For transgender elders, concealment is not always an option in the aging and health care context because the majority of transgender individuals have not had gender-conforming surgery.Footnote 76 As a result, a transgender older adult's physical characteristics may not be consistent with his or her gender identity and performance, thereby making the older adult vulnerable to the prejudice and hostility of personal health aides and other medical personnel.Footnote 77
Being closeted exacts an emotional and a physical toll on LGBT older adults. It can make them less likely to access senior services and may compromise their medical care when they are not forthcoming with medical providers.Footnote 78 Some LGBT older adults in long-term care facilities report that they will refer to their partner as a sibling or a “best friend” and create an alternate set of memories to share with non-LGBT residents and service providers.Footnote 79 As the chief of geriatric psychiatry at a New York City hospital explained, closeted LGBT elders face “a faster pathway to depression, failure to thrive and even premature death” because “there is something special about having to hide this part of your identity at a time when your entire identity is threatened.”Footnote 80
CHOSEN FAMILY AND CAREGIVING
In the general population, informal elder care is principally the responsibility of younger relatives and a disproportionate amount of the care is provided by adult daughters.Footnote 81 Non-relatives perform only 14 percent of all elder care.Footnote 82 In the LGBT community, however, the allocation of elder care is reversed. Relatives provide only 11 percent of all care.Footnote 83 Instead, spouses, partners, and friends shoulder most of the responsibility for elder care.Footnote 84 Caregiving obligations are frequently mutual and overlapping.Footnote 85 More than four out of ten LGBT older adults who are receiving care are also caregivers themselves.Footnote 86 In other words, LGBT older adults largely care for each other.
This section explores the current pattern of elder care in the LGBT community and the importance of chosen family in the lives of the current generation of LGBT older adults.Footnote 87 In a nationwide survey of LGBT older adults aged forty-five to sixty-four, nearly two-thirds reported that they had a “chosen family,” which the survey defined as “a group of people to whom you are emotionally close and consider ‘family’ even though you are not biologically or legally related.”Footnote 88
Chosen Family
The concept of chosen family has historically played a central role in the LGBT community.Footnote 89 As discussed in the prior section, many LGBT older adults are estranged from their families of origin, and they are much less likely to have children than their non-LGBT peers.Footnote 90 Until very recently, same-sex couples were not permitted to marry, leaving LGBT individuals uniquely without family, at least in a traditional sense.Footnote 91 In her influential book Families We Choose, the anthropologist Kath Weston explains,
Looking backward and forward across the life cycle, people who equated their adoption of a lesbian or gay identity with renunciation of family did so in the double sided sense of fearing rejection by the families in which they had grown up, and not expecting to marry or have children as adults.Footnote 92
Chosen family represented a creative alternative to the traditional multigenerational family formed through marriage, biology, or adoption. It was a way to build community and provide support and solidarity in the face of a hostile society. A chosen family assumed the supportive functions of a family by providing a sense of belonging, strength, and solidarity.Footnote 93 Unlike a traditional family, however, the members of a chosen family tend to be of the same generation and often include former partners.Footnote 94 Accordingly, chosen families are uniquely a gathering of brothers and sisters without children or parents.Footnote 95
Studies show that LGBT older adults rely on “close friends” or chosen family much more than do their non-LGBT peers for emotional, financial, and physical support.Footnote 96 The ability to build such strong relationships is another example of the resilience of LGBT older adults. Chosen family structures, however, have some inherent limitations, both in terms of their composition and legal standing. The single-generational character of most chosen families means that the “brothers” and “sisters” will all age in unison, giving rise to multiple and simultaneous care needs. Moreover, there will come a time when a chosen family is so depleted that it will no longer be able to provide support for its remaining members.Footnote 97 The natural depletion of a chosen family can place an LGBT older adult at an increased risk for social isolation and neglect, resulting in what gerontologists refer to as an “unbefriended elder.”Footnote 98
Chosen family also lacks legal recognition. The default rules governing substituted decision making, guardianship, and inheritance still privilege the interests of relatives defined by blood, marriage, or adoption. Marriage equality has made it possible for LGBT older adults to marry their partners, but it does not in any way alter their legal relationship with other members of a chosen family. As explained in the section that follows, in the absence of advance planning documents, it remains likely that chosen family will be considered mere legal strangers without legal standing to consent to or refuse medical treatment or make other decisions on behalf of their chosen family member.
Despite the significance of marriage equality, it is important to recognize that marriage equality does not address the legal fragility of chosen families or many of the other key concerns facing LGBT older adults, such as the need for comprehensive antidiscrimination protections and cultural competency training in the health- and senior-care contexts. It also remains to be seen how many LGBT older adults will choose to marry. As noted earlier, LGBT older adults are more likely to not have a partner than their non-LGBT peers, meaning that fewer of them are in a position to get married.Footnote 99 For those LGBT older adults who are partnered, there are also financial as well as ideological reasons that they may choose not to take advantage of nation-wide marriage equality.Footnote 100 It is also possible that marriage equality will further marginalize same-sex couple who choose not marry and reduce the availability of non-marital forms of recognition for same-sex couples, such as domestic partner benefits.Footnote 101
Caregiving
U.S. aging policy is based on the assumption that the majority of caregiving will be performed on an informal, that is, unpaid, basis, mostly by younger relatives. Informal caregiving is a critical component of aging policy because it allows the care recipient to remain in the community and age “in place,” thereby serving as an alternative to a long-term care facility or other institutional setting. Caregiving assistance runs the gamut from the mundane to the highly intimate. It includes help with “instrumental activities of daily life,” such as transportation, grocery shopping, and housekeeping.Footnote 102 It may also include help with “activities of daily life,” such as bathing, dressing, and toileting.Footnote 103 In the population at large, nearly one in seven adults is providing informal care to an individual aged fifty and older.Footnote 104 Eighty-six percent of this care is performed by relatives, most of whom are younger than the care recipient.Footnote 105 Adult children perform the lion's share of elder care, followed by spouses, and then by other relatives.Footnote 106 Not surprisingly, women provide a disproportionate amount of caregiving: 60 percent as opposed to 40 percent performed by men.Footnote 107
In the LGBT community, however, the elder-care pattern is very different. When LGBT older adults are asked whom they would rely on for caregiving, they list partners first, followed by friends, followed by relatives.Footnote 108 The statistics on caregiving reflect these preferences. Spouses and partners provide more than half of the caregiving to LGBT older adults.Footnote 109 Friends and other non-relatives provide over one-third of the care.Footnote 110 Adult children, in contrast, provide only 3 percent of elder care within the LGBT community.Footnote 111 Although LGBT older adults are less likely to have children and those who do have children may be estranged, the same study reported that one-quarter of the respondents had children.Footnote 112 Accordingly, it is not clear what accounts for the low level of caregiving by adult children of LGBT parents. In another apparent disparity, only one in nine LGBT older adults receive care from relatives, but of those LGBT older adults who provide elder care one in four is providing care to a relative, most often a parent.Footnote 113
One of the most striking characteristics of elder care within the LGBT community is its mutuality. Two out of five LGBT older adults who are receiving care are also providing care.Footnote 114 A similar number of the LGBT older adults providing care reported that the person they were helping was also the person whom they would turn to if they needed assistance.Footnote 115 In addition, the rate of caregiving among LGBT older adults is much higher than the general population, with more than one in four LGBT older adults serving as a caregiver.Footnote 116 Also, gender differences are not as pronounced. Women are only slightly more likely than men to provide care.Footnote 117
It is not necessarily surprising to see such a high rate of caregiving by spouses and partners, even though it differs markedly from the wider population, where spouses provide only 11 percent of the care.Footnote 118 Caregiving is an implicit expectation in a long-term romantic relationship and an explicit part of many marriage vows.Footnote 119 Spouse or partner caregiving could also be more common in the LGBT community due to the relative absence of gender difference that arguably gives rise to more egalitarian relationships.Footnote 120 Given the lack of adult children, spouses could be under greater pressure to provide caregiving because they cannot rely on younger, and presumably more able, adult children or grandchildren.
The high rate of non-relative caregiving is more difficult to explain and requires an understanding of the historical importance of chosen family within the LGBT community. General friendship norms of emotional support and reciprocity do not necessarily translate into regular caregiving assistance that includes providing material as well as physical support. Studies focused on non-relative caregiving in the general population have found that caregiving by friends tends to be of short duration and is generally intended to supplement regular care being provided by relatives.Footnote 121 This is not the case in the LGBT community. Far from being supplemental, many LGBT older adults receive support only from non-relatives and the care provided is often of extended duration.Footnote 122 Studies on caregiving among LGBT older adults reveal that the friends who perform caregiving are often identified as “chosen family.”Footnote 123 These friends who are also chosen family consider caregiving “to be a natural part of friendship and not an extraordinary act.”Footnote 124 Both caregivers and the care recipients report that they benefit from the relationship,Footnote 125 and in one study the majority of caregivers undertook the care without being asked by the care recipient.Footnote 126 Accordingly, caregiving among friends may not be typical, but caregiving among “friends as family” seems to be what binds the “families we choose.”Footnote 127
Building Community
Researchers who have studied the patterns of caregiving among LGBT older adults have generally sidestepped the question of why there is such a high level of mutual caregiving performed by non-relatives—chosen family. The obvious answer would seem to be expediency. LGBT older adults may have little choice but to rely on partners and chosen family because they are often estranged from their families of origin, reluctant to access aging services, and without adult children.Footnote 128 Although this may explain why LGBT older adults turn to chosen family for support, it does not explain why chosen family members take on the responsibility of caregiving.Footnote 129 It is not dictated by general friendship norms. There are no strong religious or moral imperatives, comparable to the honor commandment, that direct friends to care for one another.Footnote 130 Chosen family members certainly have no legal responsibility to provide care: there are no filial support laws lurking to snare a best friend.
Some researchers have analyzed the behavior of LGBT caregiving “dyads” on the individual level through the lens of social capital theoryFootnote 131 and communal exchange theoryFootnote 132 to explain the mutual and overlapping obligations of care. In both instances, however, the theories are largely descriptive. They do not incorporate the social and historic context that gave rise to the chosen family structure nor do they adequately explain the origin of the shared caregiving norm. Other researchers who have focused on community norms have suggested that the high level of informal elder care within the LGBT community is the result of a “culture of care” that began in the 1980s during the early years of the HIV/AIDS pandemic, when the LGBT community mobilized to provide informal care and services in the face of governmental indifference and societal condemnation.Footnote 133 One study on HIV/AIDS caregiving during this period found that 80 percent of the caregivers were identified as “friends” by the care recipients.Footnote 134
Even the “culture of care” explanation, however, does not explain how or why the ethos of care arose in the first place. Studies consistently show that gay men and lesbians express a willingness to perform care within their communities, which extends their obligations beyond the bounds of their chosen family.Footnote 135 During the early part of the HIV/AIDS pandemic, LGBT individuals certainly provided care within their chosen families, but many members of the community also volunteered to provide care for strangers.Footnote 136 These volunteers (that is, non-relative caregivers) were not working through a “personification of friendship and chosen family.”Footnote 137 They were the embodiment of community—a fellowship of shared experiences, values, and goals.
LGBT chosen families are the building blocks of this community.Footnote 138 Serving as a caregiver for chosen family may indeed be the “personification of friendship and chosen family,” but it is also an act of shared identity and solidarity with the larger LGBT community. Studies show that caregivers who are providing care for community members consider it to be a sign of strength and commitment.Footnote 139 Perhaps the strength of chosen family or community caregiving is the empathy that flows from the fellowship of shared experiences, values, and goals.Footnote 140 Through elder care, chosen families continue to help minimize minority stress and provide a buffer against anti-LGBT bias as their members age. Most importantly, informal elder care allows LGBT older adults to age in the community where they can remain true to themselves and among family.
SUPPORTING LGBT CAREGIVING
The high level of informal caregiving among LGBT older adults stands out as an example of their resilience, as well as a testament to their sense of community. This section recommends ways to support LGBT elder care through legal reforms, expanded services and cultural competency training, and individual advance planning.
Legal Reforms
As noted earlier, for good reason, LGBT older adults fear encountering anti-LGBT bias in senior-specific settings, such as housing and health care. This fear makes LGBT older adults less likely to access important supportive services and places a greater burden on informal elder care providers.Footnote 141 It also causes them to conceal their LGBT identity, which can compromise care and result in increased emotional and physical stress.Footnote 142 The first step to supporting LGBT caregiving is to enact broad non-discrimination laws to protect LGBT older adults in housing, medical care, and the provision of senior services. Federal nondiscrimination laws do not include protections based on sexual orientation or gender identity nor do the majority of state laws.Footnote 143 The newly introduced federal Equality Act would amend the Civil Rights Act of 1964 and the Fair Housing Act of 1968 to include sexual orientation and gender identity as protected classes.Footnote 144 Similar bills should be enacted on the state level.
With respect to legislative reforms specific to LGBT older adults, it is also important to amend the Older American's Act to ensure that LGBT older adults and elders receive equal access to senior services and resources.Footnote 145 The amendment could prohibit discrimination on account of sexual orientation and gender identity and require LGBT-specific services, training, and research.Footnote 146 California is the only state with special legislation designed to protect LGBT older adults.Footnote 147 There are numerous opportunities on both the state and local level to address concerns of LGBT older adults with respect to health care, senior services, and housing through licensing and regulations.
The lack of legal standing for chosen family also disadvantages LGBT older adults. Many of the most hard-fought struggles in the LGBT rights movement have been dedicated to securing legal recognition for chosen family. LGBT advocates have worked tirelessly to ensure legal recognition for same-sex relationships and access to second-parent adoptions for non-biological parents.Footnote 148 Thanks to marriage equality, an individual can now make her same-sex partner a member of her family, but there is no comparable way that she can make her best friend a member of her family.Footnote 149 In other words, although marriage equality provides an avenue to secure legal recognition for partners, it does not alter the status of other chosen family members. As a result, chosen family members will remain legal strangers—even after Obergefell v. Hodges.Footnote 150 It has also been suggested that the advent of marriage equality may further marginalize those same-sex couples who do not choose to formalize their relationships and make nonmarital forms of recognition, such as domestic partnership benefits, less available.Footnote 151
In the context of caregiving, chosen family members who lack legal recognition will be at a disadvantage in the important area of substituted decision making, especially medical decision making.Footnote 152 Issues related to substituted decision making and guardianship are governed by state law. Each state prescribes, in order of priority, a list of the individuals authorized to make decisions in the event of incapacity.Footnote 153 Although these laws uniformly privilege close relatives, twenty-four states have added the category of “close friend” that could apply to a chosen family member or even an unmarried partner.Footnote 154 The category is generally assigned a low priority, often just before the state itself, but it still empowers non-relative caregivers where there is no legally recognized next of kin.Footnote 155 On the federal level, amending the Family Medical Leave Act to include a “close friend” would also help support LGBT caregiving.Footnote 156 The addition of “close friend” to medical decision laws signals an increased willingness to look beyond the traditional family for support and represents an important step toward legal recognition of chosen family.
Inclusive Services and Cultural Competency
Independent of legal reform, significant change can be accomplished through the adoption of inclusive policies and cultural competency training designed to encourage LGBT older adults to utilize supportive services. For example, the perceived lack of LGBT-friendly senior housing options greatly increases the demand for informal elder care because LGBT older adults are determined to age in place at any cost. Although the market has begun to respond to the concerns of LGBT older adults by creating LGBT-friendly or even LGBT-centered senior housing developments,Footnote 157 the demand for such housing far outstrips supply, especially for affordable housing options.Footnote 158 As industry norms regarding LGBT issues continue to evolve, senior living facilities and service providers will have an increased incentive to adopt antidiscrimination policies and LGBT-inclusive policies, including anti-bullying rules.Footnote 159 Ideally, this information will be widely available to LGBT consumers allowing them to make informed decisions regarding their housing options.Footnote 160
In order to help implement these policies, cultural competency training programs are available to educate service providers about the unique characteristics of LGBT older adults, including the importance of chosen family and the likelihood that some LGBT older adults will be closeted.Footnote 161 Caregiver support services should also be sensitive to the particular needs of LGBT older adults—both caregivers and care recipients.Footnote 162 Intake forms should use inclusive language and policies should be reviewed to make sure they do not disadvantage LGBT older adults.Footnote 163 For example, many retirement communities have policies that do not allow two unrelated individuals to buy into the living unit, which adversely impact chosen family as well as unmarried partners.Footnote 164
There are also steps that the LGBT community can take to support LGBT older adults. Although the LGBT community provides a high level of informal elder care, intergenerational involvement is largely absent. Increased services for LGBT older adults could include younger volunteer caregivers to help alleviate some of the overlapping care responsibilities shouldered by LGBT older adults.Footnote 165 The mobilization of community resources would be similar to the volunteer efforts that were marshaled during the 1980s in response to the AIDS/HIV pandemic.Footnote 166
Advance Planning
Advance planning documents offer LGBT older adults an opportunity to memorialize their wishes and empower their caregivers. They are essential for anyone who relies on chosen family because the default rules governing substituted decision making, fiduciary appointments, and property distribution privilege traditional next of kin over chosen family.Footnote 167 In this way, LGBT older adults cannot rely on the legal default settings in place in the areas of estate planning and decision making to protect their interests and reflect their priorities.Footnote 168 The LGBT community has placed strong emphasis on advance planning as a means to protect chosen family, especially unmarried partners. Studies show that more LGBT older adults have wills and durable powers of attorneys than their non-LGBT peers,Footnote 169 perhaps reflecting the high degree of “legal consciousness” that has been documented among LGBT individuals.Footnote 170
LGBT older adults should consider supplementing the traditional estate-planning documents—will, durable power of attorney, advance directive—with an integrated elder-care plan that provides clear written instructions with respect to caregivers, housing, visitation, burial, gender identity, and anything else an individual feels strongly about, such as the care of pets or organ donation.Footnote 171 Developing the plan may require the assistance of financial advisers and medical service providers, as well as the coordination of informal caregivers. In many instances, the actual legal force of these instructions may be unclear, but, at the very least, the documents will provide some indicia of what the LGBT older adult would have wanted had she been able to express her wishes.
CONCLUSION: BRIDGING THE ELDER-CARE GAP
In the United States, the population aged sixty-five and older is projected to more than double by 2060.Footnote 172 At the same time, the older population is also becoming much more diverse, thereby presenting new challenges for policy makers as they attempt to address the needs of different groups of older adults. The example of LGBT older adults demonstrates why it is not possible to devise a one-size-fits-all aging policy. Although the intergenerational reciprocity of the honor commandment reflects the lived experience of many Americans, it is not the whole story.
LGBT older adults rely predominantly on each other for informal elder care. The unique pattern of informal elder care within the LGBT community has been influenced by certain demographic factors, as well as the legacy of pre-Stonewall views on homosexuality and gender. Younger generations of LGBT individuals will not experience aging in the same way and, one hopes, will not face the same challenges. Younger LGBT individuals have benefited from greater freedom and legal protections, including marriage equality.Footnote 173 They are less likely to be estranged from their families of origin and more likely to parent by creating intentional LGBT families.Footnote 174 Only one-quarter of all LGBT older adults aged fifty and older have children, whereas nearly one half of lesbians and one-fifth of gay men under age fifty are raising children.Footnote 175 In this way, the current pattern of elder care in the LGBT community reflects the strengths and needs of a particular age cohort. It is essential to address the specific needs of LGBT older adults when developing caregiving policies, but it is also important to ask what insights the experience of LGBT older adults can offer to the larger society as it begins to grapple with a looming elder-care gap.Footnote 176
The older population in the United States is not only growing in number. It is growing faster than the rest of the population.Footnote 177 By the year 2030, one out of every five Americans will be age sixty-five or older.Footnote 178 As the dependency ratio rises, there will be far fewer younger family members relative to the number of older adults in the population who will be available to provide care.Footnote 179 The changing demographic patterns of the American family will also contribute to the elder-care gap. For example, 20 percent of women are now choosing not to have children.Footnote 180 Multiple marriages and blended families are creating new configurations of family life made up of multiple in-laws, stepparents, and former spouses.Footnote 181 These new and emerging family formations will expand both the concept and the importance of chosen family beyond the LGBT community. As nontraditional family ties continue to grow, so will the number of chosen family caregivers, along with the associated legal shortcomings and the potential for an increase in unbefriended elders.Footnote 182 Accordingly, the next generation of non-relative caregivers will need many of the reforms advocated to strengthen caregiving among LGBT older adults, including expanded legal recognition of chosen family to include these nontraditional relationships.
Moreover, the current pattern of elder care in the LGBT community demonstrates the potential role that non-relative care can play in meeting the needs of older adults. As the elder-care gap strains family resources and social programs, it will be essential to expand the ranks of available caregivers and look beyond the traditional family. In the LGBT community, the rate of non-relative caregiving is almost two and half times more than the rate in the general population.Footnote 183 Although this pattern was partly created by necessity, it also reflects a strong ethos of community and fellowship. More research is needed to identify ways to foster this ethos in other settings and encourage friends, neighbors, and volunteers to help older adults remain a vital part of the community.Footnote 184