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    Transgender People and Dementia Care

    By Ames Simmons–

    “We’re not really a family anymore.” These were the last words spoken to me by my father, who at age 81 experienced rapidly advancing cognitive decline before his cardiac arrest and death in July 2021. Although the chances of inheriting Alzheimer’s disease are slim, my father’s dementia and the fragility of our family ties after my gender transition seven years ago reactivated a worry that I have long held as a transgender person: that I will experience cognitive decline, rupture of family relationships, and an existential threat to my gender identity. Emerging research shows that I could be partly right because transgender people have elevated risks of cognitive decline and dementia, and that I’m not alone in worrying about how dementia will affect my ability to control my gender identity and expression.

    For clarity, a transgender person has a deeply held internal sense of their gender that differs from the sex they were assigned at birth. Analysis of Washington State data from the Behavioral Risk Factor Surveillance System (BRFSS) shows that transgender people are almost six times as likely to report subjective cognitive decline than cisgender (non-transgender) people, and a separate study of national BRFSS data from 2015–2020 shows that reports of subjective cognitive decline are even higher for transgender people of color—higher than white transgender people and cisgender people of any race.

    Featured panelist Ames Simmons (second from right) at a Take Back Our State Legislature campaign event in North Carolina (2018)

    This is not all that surprising given what we know about the impact of marginalization on the health of lesbian, gay, bisexual, transgender, and queer (LGBTQ) older adults. Chronic minority stress in LGBTQ elders heightens the risk for premature cognitive aging. Higher rates of subjective cognitive decline have been reported among LGBTQ older adults who are people of color as well as LGBTQ people who report depression and/or functional impairment. Research on transgender and nonbinary people bears out that minority stress impact. Transgender people report higher rates of depression, stress, disability, and poor health than cisgender lesbian, gay, and bisexual people.

    Nearly 16 percent of transgender and nonbinary participants in Rainbows of Aging, an ancillary study of LGBTQ adults age 50+ from the Pride Study, rated their memory as poor/fair, and 17 percent reported that their memory was worse than in the previous year, both higher than rates for cisgender lesbian, gay, and bisexual people. A different study of administrative data from Florida shows the prevalence of risk factors for Alzheimer’s disease to be two to three times higher for transgender people.

    Little is known about the impact of dementia on gender identity: it may cause new or increased gender fluidity, or trans people may forget that they’ve had gender-affirming procedures. Healthcare providers likely have not had training about how to respond, whether to correct or affirm a patient’s shifting gender identity. Traditional memory care models have called for person-centered care that meets the patient in the reality they are experiencing that day. However, if we respond to transgender patients as they identify at that point in time without regard for their historical gender identity, there could be health implications if gender-affirming medical care is stopped and started quickly or repeatedly. It is exactly this result that some transgender people fear, particularly if they experience their gender in a very binary way (strictly male or strictly female) and had a hard-fought struggle to be recognized in their affirmed gender.

    It is important for healthcare providers and caregivers to understand that 1 in 2 transgender people (and 68% of transgender people of color) report past mistreatment by a healthcare provider, so fear and anxiety about losing their sense of agency due to dementia is high. In long-term care, mistreatment can mean intentional misgendering (use of the wrong pronouns), ridicule, substandard or delayed care, and being denied care altogether.

    Unfortunately, many long-term care providers do not have nondiscrimination policies in place to prevent this kind of mistreatment. There is a new resource from SAGE and the Human Rights Campaign Foundation called the Long-Term Care Equality Index that can help you find residential long-term care facilities in your area that have trans-inclusive policies. Additionally, laws such as California’s LGBT Long-Term Care Facility Residents Bill of Rights and D.C.’s LGBTQ and HIV Long-Term Care Bill of Rights provide some protections. We need a federal law to provide protection to transgender older adults everywhere.

    Some of the fears and anxieties that transgender people have reported include being afraid of lack of affirmation of their gender identity by healthcare providers or even fear that their transness will be viewed as a pathological symptom of dementia. Trans people may be afraid that their age or cognitive decline will result in termination of gender-affirming medical care such as hormone therapy.

    Diminution of cognitive abilities can reduce people’s ability to advocate for themselves in long-term care settings. That loss of agency is the aspect of dementia that transgender people report the most fear about, because of perceived loss of control over their gender identity. One in six transgender people report fear that dementia will disempower them, with transgender people of color reporting twice as much fear as white transgender respondents.

    Perceived powerlessness can make options seem limited for trans and nonbinary people. The ideal option would be care at home by a chosen caregiver if transgender people can afford in-home nursing care and/or have chosen family to provide the care. However, transgender people are less likely to have the resources to afford in-home nursing care due to lower incomes, reported by more than twice as many transgender people as the general population, with higher rates among transgender people of color. Additionally, transgender people are less likely to have family members to provide care, due to rejection by families of origin, reported by almost half of transgender people, with higher rates among transgender people of color.

    Ames Simmons in Atlanta with Congressman John Lewis (2014)

    It is incumbent on us as a society to find additional offramps to this perceived powerlessness loop. Given that it is expected that the U.S. population of people age 65+ will double by 2060, the time for us to take charge and creatively plan for dementia and cognitive decline is right now, and for many people, that means earlier in our life cycle.

    Currently, about 172,000 transgender people are estimated to be age 65 and older, and are concentrated in the South, where there are comparatively few legal protections against gender identity discrimination. Providers need to talk about dementia risks with transgender people, and proactively help them plan for dementia with advance care planning tools. Transgender people might want to think about how they feel about increased gender fluidity that might accompany cognitive decline, and how they might want their gender expression to be honored if they are less able to express those wishes.

    Talking about those values with loved ones in their lives is an important way of sharing community, as well as designating people they trust to carry out specific gender-affirming care provisions in their advance directives. Look for more information about advance care planning for transgender people in the Aging in Community column this June. Being proactive by planning ahead can help to reduce fears, allow for feeling more in control, and promote peace of mind.

    Ames Simmons (he/him) is a queer white transgender man who holds a senior fellowship at the Duke University School of Law. Simmons is a member of the National Advisory Council of the SAGE and Human Rights Campaign Foundation’s Long-Term Care Equality Index, and the Trans Elders Special Interest Group of the U.S. Professional Association for Transgender Health.

    Special Section Aging in Community by Dr. Marcy Adelman
    Published on May 4, 2023