Addressing Barriers for Aging LGBTQ Patients
It is important to note that the LGBTQ community is not homogenous.
Introduction and Definitions
When working with patients, it is important to consider their sexual orientation and gender identity to ask the right questions and provide the best care possible. There is not substantial research on caring for the elderly LGBTQ (lesbian, gay, bisexual, transgender, and queer) population. This article attempts to explain the need for informed providers in caring for the elderly LGBTQ community.
It is necessary to understand key definitions when working with LGBTQ communities. Some of these definitions include, but are not limited to:
- Sex: "Sex refers to a person's biological status and is typically categorized as male, female, or intersex (i.e., atypical combinations of features that usually distinguish male from female). There are a number of indicators of biological sex, including sex chromosomes, gonads, internal reproductive organs, and external genitalia."1 In the United States, one's natal sex is assigned at birth.
- Gender: Gender, according to the World Health Organization, "refers to the socially constructed characteristics of women and men -- such as norms, roles and relationships of and between groups of women and men. It varies from society to society and can be changed."2 Gender, according to the online Merriam-Webster Dictionary, is described as "the behavioral, cultural, or psychological traits typically associated with one sex."3 However, this definition is harmful because one may identify as a particular gender that is not male or female. Gender must be viewed as fluid, and we therefore must be accepting and understanding that one's gender may not fit into the boxes that read "male" or "female."
- Gender identity: Gender identity refers to the gender with which an individual identifies. According to the American Psychological Association, it is "one's sense of oneself as male, female, or transgender."1 However, as stated earlier, gender does not just refer to male, female, or transgender.
- Transgender: Transgender is used to describe those with "gender identities, expressions, or behaviors not traditionally associated with their birth sex."4 Transgender males are males who were assigned the female sex at birth, and transgender females are females who were assigned the male sex at birth. It is important to note that individuals are not referred to as transgendered but, rather, as transgender. Being transgender is an identity and not a disorder. In addition, they may be attracted to any gender or genders.
- Nonbinary and gender nonconforming: These individuals do not identify within the constraints of the gender binary of male and female. They may identify as both genders or neither gender.4,5 This is important to consider when discussing one's gender identity, in that a person's gender identity may not be male, female, or transgender. Similar to transgender individuals, those with this identity do not have a disorder, and they may be attracted to any gender or genders.
- Gender dysphoria: Gender dysphoria "refers to the distress that some [transgender and gender nonconforming individuals] may experience at some point in their lives as a result of incongruence between their gender identity and birth sex." It is included in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, and "improves with gender-affirming treatment."6
- Cisgender/cisgendered: According to the Oxford English Dictionary, cisgender describes "a person whose sense of personal identity and gender corresponds with their birth sex."7
- Sexual orientation: Sexual orientation is used to describe one's preference of sexual or romantic partner. This may include lesbian, gay, bisexual, asexual, and more. However, one's sexual orientation does not always fit in distinct groupings. In addition, one's sexual orientation may change over time.
- Lesbian: Lesbians are women attracted to other women.
- Gay: Gay men are attracted to other men.
- Bisexual: Bisexual individuals are those attracted to both men and women.
- Queer: Queer can encompass multiple definitions. It can be used to describe those who identify as being nonheterosexual or as an umbrella term for the LGBTQ community. It can also be used by those who are attracted to more than 1 gender or by those who do not identify with cultural norms surrounding sexuality. It is important to note that the term "queer" may be used by individuals who themselves identify as queer, but it may be otherwise viewed as discriminatory, depending on the individual, community, geographic location, and so on.
It is important to note that the LGBTQ community is not homogenous, and that groups within the acronym are not homogenous either.
As the US population ages, it becomes more diverse.8,9 It is difficult to assess the size of the LGBT population, but there are estimates that 3.5% of adults in the United States are LGB, approximately 0.3% of whom are transgender.10-12 The National Gay and Lesbian Task Force Policy Institute approximates that there are 1 to 3 million LGBT Americans who are aged 65 years and older. As the number of older people in the United States increases and will continue to increase for the next decades, it is estimated that the number of LGB adults will surpass 6 million by 2030.9,13,14
Needs and Concerns of Older LGBTQ Adults
A survey of 2376 LGBTQ adults aged 45 to 75 years found that older LGBTQ adults have many concerns, some of which are unique to being both elderly and LGBTQ. For example, 51% of older LGBTQ individuals (those aged 45 to 75 years) are "very or extremely concerned about 'having enough money to live on,' as compared to 36% of non-LGBT people."15 In addition, 32% of the older LGBT population is concerned about "being lonely and growing old alone," relative to 19% of the non-LGBT population.15 Older LGBTQ adults are concerned about opportunities available to them if others know about their sexual orientation or gender identity. For example, 27% of them believe that if others know about their sexual orientation, work or volunteer positions will not be available to them.15 Thirty-three percent of transgender adults feel these positions will not be available to them if others know about their gender identity.15 When seeking out housing, 13% of LGBTQ adults and 25% of transgender older adults say they have been discriminated against because of their sexual orientations or gender identities.15
In another study that surveyed 2560 LGBTQ adults aged 50 to 95 years across the United States, responses showed that 68% had faced verbal harassment at some point in their lives, and 43% were threatened with violence. In terms of mental health, 53% report feeling lonely, and 31% have depression. Of the gay and bisexual male participants in the survey, 14% were living with HIV.16 This study identified the 5 services most needed by the LGBTQ community as social events, transportation, support groups, legal services, and senior housing. In another study, 54% of LGBT adults said that their gender identity makes aging more difficult.17,18
Healthcare Disparities of LGBTQ Elders vs Non-LGBTQ Elders
The definition of healthcare disparities, according to the US Department of Health and Human Services, is differences in health that are a consequence of systemic economic, social, and environmental drawbacks. Many older LGBTQ individuals are concerned about healthcare access as they age. Forty percent of LGBQ adults in their 60s and 70s, as well as 43% of single, older LGBTQ individuals aged 45 to 75 years, state that their healthcare providers are not aware of their sexual orientations. Alarmingly, 65% of transgender adults aged 45 to 75 years believe "that there will be limited access to healthcare as they grow older."15 In a different survey of LGBTQ adults aged 50 to 95 years, 21% reported not disclosing their sexual or gender identity to their physicians. This same study reported 22% of transgender adults need to see a physician but cannot afford the visit. Of the LGBTQ individuals surveyed, 15% are fearful of accessing healthcare outside of LGBTQ community. In another study of more than 2500 older LGBTQ adults, more than 10% were denied care or provided inferior care because they were LGBTQ.16 A study of administrators and care providers showed that 75% had no existing endeavors to address older LGBTQ individuals' needs.19,20
For gay men and lesbians, there are several factors that are detrimental to their health. There are higher rates of suicidal ideation, suicide attempts, use of psychiatric medicine, and self-injurious behavior for gay men and lesbians.21-24 There are also higher rates of smoking, excessive drinking, and disability.256 Another study found that internalized stigma, obesity, lack of healthcare access, lifetime victimization, and limited physical activity were risk factors for disability, depression, and poor general health for LGB older adults.26,27
In a study of more than 2000 LGB adults aged 50 years and older, results showed that obesity, limited physical activity, lifetime victimization, and financial barriers to healthcare were each significantly and independently responsible for disability, depression, and poor general health of the participants.26 It was also found that internalized stigma was an additional predictor of disability and depression.26 Protective factors relative to poor general health, depression, and disability included increased social support and social network size.26
Mental Health Issues Faced by LGBTQ Elders
One of the reasons for increased mental health issues faced by older LGBTQ people compared with heterosexual people is continuous exposure to discrimination.20,27,28 These mental health issues faced by LGBTQ individuals may be worsened by discrimination or the expectation of discrimination by service providers.29-31 In a study of people aged 55 years and older living in Britain, older LGB individuals reported being more anxious than heterosexual individuals in the same age range. A lot of their anxiety stemmed from the belief that their sexual orientation or gender identity would affect them as they aged, and they were most specifically concerned about facing discrimination.20,31 Lesbian and bisexual women were found to be more likely to have ever had a diagnosis of depression or anxiety than heterosexual women, and it was found that 40% have a lifelong prevalence of depression and 33% have lifelong prevalence of anxiety.20,31 Bisexual and gay men were twice as likely to have ever had a diagnosis of anxiety or depression compared with heterosexual men.20,31
Disparities Specific to Elderly Transgender Individuals
There is very limited research available on specific disparities among elder transgender and gender nonconforming populations. Research has shown that older transgender adults, relative to nontransgender older LGB adults, are at a greater risk for disability, depressive symptoms, poor physical health, and perceived stress.27,32 Relative to nontransgender adults, older transgender adults face higher risks for poor health, which has been linked to less access to healthcare, less social support, less physical activity, and increased levels of victimization, discrimination, and stress.27,32 Obstacles to obtaining care are augmented by limited services that are culturally competent.6 For transgender and gender nonconforming individuals, it is not uncommon for them to seek out care to transition from 1 gender to another in mid- or later life.33
Older transgender adults have lower levels of self-acceptance: 48% of transgender older adults face depression compared with 30% of LGB older adults and 5% of older heterosexual populations.34 More than 50% of transgender adults aged 55 years and older state they have lost close friends because of their gender identity.35 Forty percent of transgender adults aged 55 years and older state that their gender identity is the reason their children do not have contact with them.35 Moreover, 44% of transgender older adults live alone34 compared with 18% of the population.17 Transgender individuals have said that being old increases their risk of experiencing hate crimes because they have to deal with prejudice and discrimination, in addition to ageism.26
Transgender individuals are fearful that their gender identity will not be respected in long-term care and hospice facilities.36 Moreover, they are concerned that their gravestones and death certificates will not display their correct names or gender identities.17 According to 1 study of 24 countries, older transgender adults have completed few end-of-life decisions. Of transgender adults aged 51 to 60 years, 15.2% had completed a will, and of transgender adults aged 61 years and older, only 8.1% had completed a will.17 Only 8.1% of transgender adults aged 51 to 60 years and 7.4% of transgender adults aged 61 years and older had a durable power of attorney.17 There was a significant increase in those who had a will for transgender adults living with a chronic illness.
End-of-Life Issues: Hospice/Palliative Care
In general, it can be difficult for those in hospice or palliative care to focus both on disease and end-of-life care, as well as sexual health and sexuality. Sex and sexuality are connected to self-esteem, mood, pleasure, social role, and other factors that affect quality of life.37,38 Because the majority of society views significant illness, dying, and sexuality as taboo topics, it is the role of the healthcare provider to bring up these topics.38,439 Because many LGBTQ individuals face discrimination and stigmatization by society, those in palliative care may voluntarily omit information such as HIV status, sexual orientation, or other possibly stigmatizing information from their healthcare providers.38 In addition, for older LGBTQ individuals, there may be generational differences in terms of comfort in sharing information about one's sexual orientation in healthcare settings.38,40 This is partially because of the heteronormative outlook, or the assumption that people are heterosexual, held by most of society, as well as most healthcare providers.38 Older LGBTQ adults may feel less comfortable disclosing information regarding their sexuality to healthcare providers because they may have experienced a significant amount of discrimination regarding their sexuality throughout their lives.38 Transgender individuals fear that lack of understanding or appropriate responses regarding their gender identity or expression can lead to trouble in accessing palliative care.38,41
Palliative care should include all aspects of one's life, including sexuality, and sexuality should be a part of the "personal side of dying."42,43 Providing palliative care for the LGBTQ population has evolved over time; the current palliative care framework for LGBTQ patients is not 1 in which HIV/AIDS is at the forefront.38 It is necessary that healthcare providers inquire about sexual identity, avoid assumptions about one's sexual orientation (specifically that the patient is heterosexual), and ensure that partners are included in decision-making.38,44
Importance of Social Networks for LGBTQ Elders
In general, as people age, the size of their support system decreases.27,45 Social network size shrinks for older LGBTQ members as well.27 Because older LGBTQ adults are less likely to marry, partner, or have children than older heterosexual individuals, the social networks of older LGBTQ individuals may be comprised more of peers and friends than partners, spouses, or children.25,27 There is an inverse relationship between social network size and depression, disability, and poor general health among LGB elders.24,46 In addition, for LGB elders, increased social networks weaken the connection between internalized stigma and poor general health.25,46
Addressing Disparities and Barriers to Healthcare Access
To address disparities and barriers to healthcare access, it is important that healthcare providers bring up sexuality with their patients, as it is a difficult conversation for patients to initiate. Moreover, it is important to provide an "open and affirming practice style" to allow for older LGBTQ patients to feel more comfortable disclosing information regarding their sexuality.38 It is important for clinicians to guarantee privacy, confidentiality, and professionalism with each interaction.47 When approaching sexuality and end-of-life care, providers should be nonjudgmental and purposefully use language that is applicable to any sexual orientation.39,49 Clinicians should allow for patients to communicate their needs and desires to whatever extent they would like.38,48 It is imperative that providers ask for patients' gender pronouns, which may include he, she, they, and so on. It is important to remember that one's sexual orientation and gender identity may have changed and may continue to change with time.
Needs for Future Research
According to the Centers for Disease Control and Prevention, there is a huge need for research regarding sexual orientation and its relation to health disparities. Regarding palliative care for the LGBTQ community, a literature review noted that very few papers focused on the bisexual and transgender populations.44 In general, there is a greater need for research on caring for older bisexual and transgender populations. In addition, there is a lack of research on caring for older gender nonconforming individuals who do not identify with the gender binary, as much of the existent research focuses on transitioning from 1 binary gender to another through hormone therapy or sex confirmation surgery. Research on the most effective training and protocols for providers is also necessary to ensure LGBTQ patients feel respected by providers. There is also a need for research on the effect of the national legalization on same sex marriage by the US Supreme Court in June 2015 and its effect on healthcare provision for older LGBTQ individuals. Research is needed to understand the differences and intersectionality of older LGBTQ individuals based on race, socioeconomic status, ethnicity, and so on, and how these statuses interact with one another. Finally, further research should be conducted from the perspective of older LGBTQ individuals on how providers can best care for them.
Older LGBTQ individuals face significant disparities, discrimination, and stigmatization. They experience disparities in healthcare as a whole, including in mental health and palliative care. There are greater rates of depression, anxiety, obesity, smoking, disability, and poor general health among this population. Increased social networks can be helpful in minimizing some of the disparities, but healthcare providers need to play a greater role as well. Members of this population are fearful of discrimination by healthcare providers, and some will avoid care for this reason. There is a need for greater research on caring for older LGBTQ adults and how to ensure the provision of the best possible care for them.
- American Psychological Association. Guidelines for psychological practice with lesbian, gay, and bisexual clients. Am Psychologist. 2012;67(1):10-42. doi: 10.1037/a0024659
- Department of Gender, Women, and Health. Gender mainstreaming for health managers: a practical approach. Geneva: World Health Organization; 2011. http://apps.who.int/iris/bitstream/10665/44516/1/9789241501071_eng.pdf. Accessed April 26, 2017.
- Merriam-Webster Dictionary. Definition of gender. http://www.merriam-webster.com/dictionary/gender. Accessed April 26, 2017.
- Mayer KH, Bradford JB, Makadon HJ, Stall R, Goldhammer H, Landers S. Sexual and gender minority health: what we know and what needs to be done. Am J Public Health. 2008;98(6):989-995. doi: 10.2105/AJPH.2007.127811
- Cruz, T. Assessing access to care for transgender and gender nonconforming people: A consideration of diversity in combating discrimination. Soc Sci Med. 2014;110:65-73. doi: 10.1016/j.socscimed.2014.03.032
- Bockting W, Coleman E, Deutsch MB, et al. Adult development and quality of life of transgender and gender nonconforming people. Curr Opin Endocrinol Diabetes Obes. 2016;23(2):188-197. doi: 10.1097/MED.0000000000000232
- Oxford Dictionaries. Definition of cisgender. http://www.oxforddictionaries.com/us/definition/american_english/cisgender. Accessed April 26, 2017.
- Vincent GA, Velkoff VA. The next four decades, the older population in the United States: 2010 to 2050. Current population reports. Washington, DC: US Census Bureau; 2010. https://www.census.gov/prod/2010pubs/p25-1138.pdf. Accessed April 26, 2017.
- Fredriksen-Goldsen KI, Emlet CA, Kim HJ, et al. The physical and mental health of lesbian, gay male, and bisexual (LGB) older adults: the role of key health indicators and risk and protective factors. Gerontologist. 2013;53(4):664-675. doi: 10.1093/geront/gns123
- Institute of Medicine. The health of lesbian, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington, DC: National Academies Press; 2011. https://www.nap.edu/read/13128/chapter/1. Accessed April 27, 2017.
- Gates, W. How many people are lesbian, gay, bisexual, and transgender? Los Angeles, CA: Williams Institute; 2011. https://williamsinstitute.law.ucla.edu/wp-content/uploads/Gates-How-Many-People-LGBT-Apr-2011.pdf. Accessed April 27, 2017.
- Orel NA. Investigating the needs and concerns of lesbian, gay, bisexual, and transgender older adults: the use of qualitative and quantitative methodology. J Homosex. 2014;61(1):53-78. doi: 10.1080/00918369.2013.835236
- Cahill S, South K, Spade J. Outing age: Public policy issues affecting gay, lesbian, bisexual and transgender elders. Washington, DC: National Gay and Lesbian Task Force; 2000. http://www.thetaskforce.org/static_html/downloads/reports/reports/outingage_final.pdf. Accessed April 27, 2017.
- Fredriksen-Goldsen KI. Caregiving with pride. Binghamton, NY: Haworth Press; 2007.
- Espinoza R. Out & visible: the experiences and attitudes of lesbian, gay, bisexual and transgender older adults, ages 45-75. New York: Services and Advocacy for GLBT Elders; 2014. http://www.sageusa.org/files/LGBT_OAMarketResearch_Rpt.pdf.
- 1Fredriksen-Goldsen KI, Kim H-J, Emlet CA, et al. The aging and health report: disparities and resilience among lesbian, gay, bisexual, and transgender older adults. Seattle: Institute for Multigenerational Health; 2011. http://caringandaging.org/wordpress/wp-content/uploads/2011/05/Full-Report-FINAL-11-16-11.pdf. Accessed April 26, 2017.
- MetLife Mature Market Institute. Still out, still aging: The MetLife study of lesbian, gay, bisexual and transgender baby boomers, New York: MetLife Mature Market Institute; 2010. https://www.metlife.com/assets/cao/mmi/publications/studies/2010/mmi-still-out-still-aging.pdf. Accessed April 26, 2017.
- Sagie, O. Well-being in older gays and lesbians: a comparison of predictors. Soc Indic Res. 2015;126(1):395-409. doi: 10.1007/s11205-015-0894-9
- Hughes AK, Harold RD, Boyer JM. Awareness of LGBT aging issues among aging services network providers. J Gerontol Soc Work. 2011;54(7):659-677. doi: 10.1080/01634372.2011.585392
- Tinney J, Dow B, Maude P, Purchase R, Whyte C, Barrett C. Mental health issues and discrimination among older LGBTI people. Int Psychogeriatr. 2015;27(9):1411-1416. doi: 10.1017/S1041610214002671
- Haas AP, Eliason M, Mays VM, et al. Suicide and suicide risk in lesbian, gay, bisexual, and transgender populations: review and recommendations. J Homosex. 2011;58(1):10-51. doi: 10.1080/00918369.2011.534038
- Balsam KF, Beauchaine TP, Mickey RM, Rothblum ED. Mental health of lesbian, gay, bisexual, and heterosexual siblings: effects of gender, sexual orientation, and family. J Abnorm Psychol. 2005;114(3):471-476. doi: 10.1037/0021-843X.114.3.471
- King M, Semlyen J, Tai SS, et al. A systematic review of mental disorder, suicide, and deliberate self harm in lesbian, gay and bisexual people. BMC Psychiatry. 2008;8:70. doi: 10.1186/1471-244X-8-70
- D'Augelli AR, Grossman AH. Disclosure of sexual orientation, victimization, and mental health among lesbian, gay, and bisexual older adults. J Interpersonal Violence. 2001;16:1008-1027. doi: 10.1177/088626001016010003
- Fredriksen-Goldsen KI, Kim HJ, Barkan SE, Muraco A, Hoy-Ellis CP. Health disparities among lesbian, gay, and bisexual older adults: results from a population-based study. Am J Public Health. 2013;103(10):1802-1809. doi: 10.2105/AJPH.2012.301110
- Fredriksen-Goldsen KI, Emlet CA, Kim HJ, et al. The physical and mental health of lesbian, gay male, and bisexual (LGB) older adults: the role of key health indicators and risk and protective factors. Gerontologist. 2013;53(4):664-675. doi: 10.1093/geront/gns123
- Fredriksen-Goldsen KI, Kim HJ, Shiu C, Goldsen J, Emlet CA. Successful aging among LGBT older adults: physical and mental health-related quality of life by age group. Gerontologist. 2015;55(1):154-168. doi: 10.1093/geront/gnu081
- Leonard W, Pitts M, Mitchell A, et al. Private lives 2: the second national survey of the health and wellbeing of gay, lesbian, bisexual and transgender (GLBT). Melbourne: Australian Research Centre in Sex, Health and Society; 2012. http://www.glhv.org.au/files/PrivateLives2Report.pdf. Accessed April 26, 2017.
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- Guasp A. Lesbian, Gay and Bisexual People in Later Life. London: Stonewall; 2011.
- Fredriksen-Goldsen KI, Cook-Daniels L, Kim HJ, et al. Physical and mental health of transgender older adults: an at-risk and underserved population. Gerontologist. 2014;54:488-500. doi: 10.1093/geront/gnt021
- Ettner R, Wylie K. Psychological and social adjustment in older transsexual people. Maturitas. 2013;74(3):226-229. doi:10.1016/j.maturitas.2012.11.011
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- Grant J, Motte M, Tanis J, Harrison J, Keisling H, Keisling M. Injustice at every turn: A report of the national transgender discrimination survey. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force; 2011. http://www.thetaskforce.org/downloads/reports/reports/ntds_full.pdf. Accessed April 26, 2017.
- Witten TM, Eyler AE, Ettner R, Monstrey S, Eylered AE. Transgender aging and the care of the elderly transgendered patient. Principles of transgender medicine and surgery. New York: The Haworth Press; 2007;343-372.
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