For generations, older persons have had to confront being stereotyped, discriminated against, and even rendered invisible. In workplaces, they were often viewed as over-the-hill and less productive. In entertainment, their presence dwindled in favor of younger performers deemed more sellable. In politics, older office holders were frequently exhorted to make way for new blood considered more in tune with the times.
The picture has gradually improved, thanks to protective legislation, a better informed awareness of seniors’ abilities and worth, and evolving cultural attitudes. However, the circumstances of the older LGBTQ population have not risen the same way they have for today’s seniors overall. Indeed, LGBTQ adults age 50 and older often go largely unseen, and when seen are subject to unequal treatment, up to and including being abused and dismissed.
It makes for a sizable issue that is only going to grow larger.
According to the Movement Advancement Project (MAP), an independent nonprofit think tank, there are over 2.4 million LGBTQ adults over age 50 in the United States; approximately 234,000 of those are in Colorado. MAP projects the nationwide number will double by 2030 to over 5 million. Founded in 2006, MAP describes its purpose as providing and communicating rigorous research and insight to help speed equality and opportunity for all.
A recent AARP national survey showed many LGBTQ adults age 45 and over have concerns about aging, with worries about having enough money in retirement, discrimination and a lack of family support topping the list. (AARP is an AgeWise Colorado Provider.)
“The realities of older LGBTQ adults are often invisible, but our research shows they are clearly worried about aging with dignity, especially when it comes to finances, discrimination and family and social support,” said AARP Senior Research Advisor Cassandra Cantave. “It’s critical that we as a society address the unique challenges and disparities that older LGBTQ adults face so they can thrive throughout their lives.”
Private, practical challenges
Nearly half of the survey participants were either extremely or very concerned about having enough family and social supports to rely on as they age. Two-thirds believe they will need someone to provide caregiving for them in the future. This is not at all unlike a childless couple or straight person; having a close relative or friend to help in your care as you age is not a given. A clear majority of those surveyed were already providing caregiving for a loved one and anticipate caregiving for a relative, friend, spouse, or partner in the future. This responsibility has taken a toll in emotional stress and other negative health impacts. In addition, 40% of survey respondents said they have a disability or chronic disease.
Social isolation is another real issue, with about half of participants noting they felt left out and lacked companionship. More than half reported being socially isolated, and more than one-fifth were seeing a mental health professional for depression or anxiety. Most gay men reported that they are less likely to be married, less likely to have children or grandchildren and more likely to live alone, which could put them at greater risk of becoming isolated as they age. Almost two-thirds of the lesbian women in the research said they have a child or grandchild, compared to less than one-third of gay men.
In addition to concerns about family and social supports, LGBTQ adults also reported anxiety about their financial security and having enough financial assets to retire. More than one-third said their financial situation was fair or poor. They are uncertain about managing debt and the cost of health care and prescription medication. Health care costs have at times prompted nearly half of respondents to change medication routines (e.g., skipping doses or delaying prescription refills) or how they receive care (e.g., not going to a specialist when they should).
Societal and cultural challenges
Older adults across all segments of the LGBTQ community reportedly also worry about discrimination and the negative impact it may have on them as they age. This includes concern about sexual discrimination and gender identity discrimination.
“To identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ) often means fearing discrimination that some believe will continue as they age,” AARP states. As possible remedies, many of those surveyed support workplace training about inclusion, diversity and equity. They also favor protective legislation.
Lambda Legal is a national advocacy organization that defends the rights of LGBTQ and HIV-positive seniors who face discrimination related to their sexual orientation, gender identity or HIV status. Lambda’s causes include discrimination by staff and residents at senior centers; denial of housing; denial of the ability for same-sex couples to share a room in an assisted living facility or nursing home; disrespect of gender identity including while incapacitated or at death; and denial of equal Social Security benefits and survivor benefits as compared to their heterosexual counterparts. Lambda also contends that too few heath care professionals are adequately trained and prepared to meet the needs of the aging LGBTQ and transgender population.
Lambda does point to “good news” in that there are laws in place that protect older LGBTQ people against discrimination in health care and housing. “And there are documents to sign, such as wills, powers of attorney and health care proxies that can help you retain power over your decision-making as you age.” Older adults are strongly recommended to take advantage of these tools. As Lambda notes, “Knowing your rights can make a big difference as you navigate through issues of housing, health care and life planning.”
Tools you can use
Still, the road is often not easy for LGBTQ and transgender seniors. In Lambda’s 2009 national Health Care Fairness Survey (which had nearly 5,000 respondents overall), 33.8 percent of LGBT seniors reported that health care professionals had used harsh language towards them, and 35.5 percent of seniors living with HIV reported that health care professionals had refused to touch them. “An astonishing 62.9 percent of transgender seniors said they felt health care professionals were unaware of their health needs.” Lambda tells of reported horror stories, such as assisted-living and nursing homes, where staff who had rigid religious beliefs literally prayed for such clients to die, because they thought they were “an abomination to God.”
Lambda insists that LGBTQ older adults need to know their rights and protect themselves. “If you’re married, in a civil union or domestic partnership, you and your partner may benefit from protections associated with those legal statuses in the event either of you is incapacitated or dies. However, because recognition of the marriages, civil unions and domestic partnerships of same-sex couples aren’t consistent from state to state, death-related protections may not travel across state lines.”
So Lambda points to a number of tools LGBTQ seniors should be aware of and make use of:
• The Federal Nursing Home Reform Act (“FNHRA”). Enacted in 1987, this may offer LGBTQ seniors and seniors living with HIV protections against discrimination, abuse and neglect based on sexual orientation and gender identity/expression. Nursing homes, rehabilitation, and health-related care and services facilities that receive Medicaid or Medicare funding are prohibited, for instance, from isolating residents and required to treat all residents with dignity and respect.
• Hospital Visitation Reform. In January of 2022, new federal guidelines took effect. National regulations now require hospitals participating in Medicaid and Medicare to have written policies and procedures regarding patients’ visitation rights. Hospitals must inform patients, or an attending friend or family member, of the patient’s rights to visitors of his or her choosing. The policy also prohibits discrimination against visitors based on gender identity and sexual orientation.
• Health Care Proxy or Durable Power of Attorney. This document enables you to legally designate someone you trust to make health care decisions for you in the event you cannot make them for yourself. Hospitals, doctors and other health care providers must follow your agent’s decisions as if they were your own.
• A Financial Power of Attorney. Use this document to legally designate an individual to handle your financial assets should you become unable to do so. Financial power of attorney is a critical tool to ensure that your everyday expenses are paid, taxes are filed and your government benefits such as Social Security and Medicare are collected.
• A Will. This document allows you to decide what happens to your personal belongings after your death, including your home, cash, bank accounts, pets and other personal assets.
Tip: For all documents, Lambda advises signing multiple originals so you have extras in case health care staff or others say a copy is insufficient.
“LGBTQ seniors and seniors living with HIV are entitled to enjoy their older years free of harassment and discrimination,” states Lambda. If you or someone you know has been discriminated against in any way, contact Lambda Legal by calling their Legal Help Desk toll-free at 866-542-8336 or going to www.lambdalegal.org/help.
A Caregiving Guide
AARP offers a custom Caregiving Guide to help address the many unique challenges faced by older LGBTQ adults. “If your loved one identifies as lesbian, gay, bisexual or transgender, you will likely face extra challenges around caregiving,” AARP notes. “LGBTQ older adults are twice as likely to be single and four times less likely to have children than their non-LGBTQ counterparts. Many are estranged from their biological families, which means they’re less likely to have the traditional caregiver support that many older adults rely on.”
AARP notes further: “LGBTQ older adults instead typically rely on families of choice for support and it is very common for a close friend, an ex-partner, or a younger relative (such as a niece or nephew) to become the primary caregiver for an older LGBTQ adult who needs assistance. These relationships often go unrecognized legally and even socially, which can make it difficult for someone to be identified as a caregiver or to perform tasks and access services on their loved one’s behalf. Moreover, because LGBTQ older adults often rely on close friends of similar age for caregiving, these caregivers may be unable to provide longstanding support as they develop their own health impairments.”
AARP says caregivers for LGBTQ older adults should be mindful of this as they prepare to care. It’s also important for caregivers who are not part of the LGBTQ community to be mindful of the particular challenges LGBTQ people have faced. Just a few decades ago homosexuality was considered a mental illness and a crime, with housing, employment, and healthcare discrimination being common. Those experiences traumatized many victims, and less welcoming communities may still inflict such trauma.
AARP notes, “Such experiences make many LGBTQ older adults fearful or distrustful of medical and social service providers. They may isolate themselves from others rather than risk experiencing further discrimination. Many wish to keep their sexual orientation or gender identity secret altogether. A 2010 study revealed that LGBTQ older adults access services, like senior centers and meal programs, and benefits, like housing assistance or food stamps, at only 20% the rate that their non-LGBTQ peers do. If they enter a long-term care system, 78% of LGBTQ seniors stay in the closet.”
AARP believes that whether you’re at a point where you just anticipate a need to take care of a loved one, or you’re already doing so, having a good framework to help guide both you and your loved one will make the process easier. So AARP has created a Guide to help you. It includes information, resources, and checklists to help you get organized and find the support that you might need. The Guide recommends these five steps:
START A CONVERSATION. Don’t wait until a crisis occurs to talk about health care preferences or details on finances. A crisis can also lead to assumptions and hastily-made decisions rather than ones that are carefully thought out.
MAKE A PLAN. Putting together a caregiving plan now will help you respond more quickly and effectively should the need arise. A plan helps everyone get on the same page and keeps the focus on what’s best for your loved one and for you. Note that you may need to put legal documents in place in order to carry out parts of this plan. Do so before an emergency arises so your loved one is able to state and verify their own wishes.
FORM A TEAM. You will be more effective as a caregiver if you don’t try to do it alone. Find others who can help you, whether they’re friends, family members, community groups, or professional service providers. Don’t overlook colleagues, clubs or religious and other organizational affiliations as resources.
FIND SUPPORT. Many issues may arise during your caregiving experience that require additional information and resources. Don’t hesitate to reach out to organizations and professionals with experience in helping family caregivers.
CARE FOR YOURSELF. Remember your own needs. Keeping up your energy and maintaining your health are critical in order to care for others. It’s just as important to plan for self-care as it is to create a plan for others’ care. Be honest with yourself about what you’re agreeing to, and understand your own capacity for helping before stepping into a caregiving role.