Leah Eskenazi, Family Caregiver Alliance
Leah Eskenazi, Family Caregiver Alliance
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I clearly remember the first time I met Herb. He had beautiful white hair framing a handsome face with an inviting smile. But he greeted me with decidedly exhausted eyes.
He introduced me to Charles, who sat in the wheelchair Herb was pushing towards the church entrance where the local dementia day respite program met. As the director of Caregiver Services for a local community hospital — sponsor of the day respite program — my staff and I learned to respect Herb’s fierce independence. He clearly was determined to manage all of the care Charles needed — meal prep, bathing, toileting, dressing, emotional support and more. But the stress was taking a toll on Herb’s health. On the advice of his doctor, Herb finally agreed to take advantage of the two afternoons a week the day program afforded him. It wasn’t until Charles’ death about four years later that we learned, at the memorial service, of Charles and Herb’s 47-year committed relationship.
Twenty-five years ago, when I first met this couple, a community health and social version of ‘don’t ask, don’t tell’ was common. Herb and Charles grew up during the McCarthy era when any indication of homosexuality was met with pervasive stigma, destructive branding and legal and economic consequences. In select older lesbian, gay, bisexual and transgender (LGBT) age groups, and in certain geographic areas and social settings, people remain selective about who and when it feels safe enough to reveal one’s authentic LGBT self. Some individuals may even choose not to disclose their sexual orientation or gender identity to their medical doctor, therapist or community service agency, leaving them unable to gain the full benefit from the services provided. Health and social service professionals at all levels can even contribute to this problem by ignoring or not having time to discuss an older adult’s emotional health concerns and altogether avoiding sexual health in their assessment.
As a nation, Americans are paying greater attention to age-related concerns and chronic debilitating illness. While many of these are issues shared among all older adults and those who care for them, some unique considerations arise for aging LGBT people. Although estimates vary, conservatively 2.4 million adults age 50 and older self-identify as LGBT. With the documented growth of the age 50-plus population, the number of self-identified LGBT older adults will more than double by 2030. The key challenges facing aging LGBT adults center around: chronic health care, caregiving, financial security for long-term care, social isolation, building resiliency and where to find trusted help.
Today, thanks to dedicated social and political activism fermented in the 1960s and ’70s, LGBT adults reaching their 50s and beyond are seeing incremental improvement in acceptance and assistance by mainstream health practitioners and long-term care community service providers.
In 2015, California enacted legislation to develop standards and provide LGBT cultural competency for medical providers. The law works to ensure that physicians and surgeons receive continuing medical education to increase cultural competency in their work with LGBT patients, and hopefully with their partners and families also. To ensure that the training encompasses the needs of older LGBT community members, in addition to younger adults, advocacy and expert resources are available in person and online. Openhouse in the San Francisco area, and Lavender Senior online are community providers at the forefront of those working to prepare for and serve this emerging older adult population. (More elder LGBT training options can be found in the Resource section below.)
Health disparities for LGBT adults are just now coming to light. At the invitation of the National Institutes of Health, the Institute of Medicine released a report saying:
“While LGBT populations are often seen as a single entity for research and advocacy purposes, each [lesbian, gay, transgender, bisexual] is a distinct population group with its own specific health needs.”
With the benefit of more in-depth research, we are learning that responsive, reliable health and long-term care services and support for bisexual and transgender older adults lag behind their lesbian and gay peers. The IOM report also notes that the experiences of LGBT individuals are not uniform, and are shaped by race, ethnicity, socioeconomic status, geographical location and age, any of which can have an effect on health-related concerns and needs.
The “The Aging and Health Report: Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults,” by primary investigator Karen I. Fredriksen-Goldsen and her co-investigative team further illuminates the lives of older LGBT adults by helping to fill in long-standing information gaps and identify opportunities to address current health concerns for potential improved long-term outcomes. The first longitudinal study addressing the needs of baby boomer LGBT seniors nationally is now underway by Dr. Fredriksen-Goldsen and co-investigators, including, for the first time, representation from the South (Texas, Georgia and Kentucky).
LGBT community members are living longer and with this increase in life expectancy comes the risk of Alzheimer’s disease and related dementias. At a recent groundbreaking conference in San Francisco on dementia awareness and caregiving for LGBT older adults from diverse communities, Dr. Fredriksen-Goldsen said that the findings to date from the longitudinal study paint a vivid portrait of LGBT older adults and their families, documenting strengths and health disparities. With more than 2,400 LGBT study participants ranging from age 50 to 100 years old, this project deepens our understanding of how various life experiences are related to changes and trajectories in health and aging over time. To hear Dr. Fredriksen-Goldsen’s presentation, and the other speakers addressing LGBT aging and caregiving, dementia, substance abuse and end of life, view the just-released recorded presentations here.
LGBT communities know caregiving first hand, having cared for and experienced devastating losses throughout the HIV/AIDS epidemic. The impact of the epidemic affected the LGBT population primarily in two ways. First, there is tremendous psychological distress associated with having lived through a devastating epidemic. Second, many medical advances, primarily those in antiretroviral therapy, have increased the lifespan of those living with HIV/AIDS. In the United States, approximately 28 percent of people living with HIV/AIDS are over 50 years old. This number is projected to grow to 50 percent by 2017.
Yet, since the start of the AIDS epidemic more than three decades ago, doctors, caregivers and patients have observed that some people living with HIV/AIDS experience decline in brain function and movement skills, as well as shifts in behavior and mood. This disorder is called HIV-associated neurocognitive disorder, or HAND. It can afflict anyone with HIV/AIDS, homosexual and heterosexual alike. Caring for a loved one with HAND can be challenging due to the physical, cognitive and emotional issues involved. A more in-depth discussion of this condition is available in a newly released FCA fact sheet you can read here.
The support that a caregiver receives from friends and family is often critical in relieving stress that can be part of caring for someone who has a chronic debilitating health condition. LGBT caregivers may find that they have less support than they would like from their own — or the care receiver’s — biological family members. Historically, to fill in this gap, many LGBT people have formed strong “families of choice,” a support system comprised of trusted friends, relatives and supportive community service providers.
Being a member of both a chosen family and a family of origin creates situations where an LGBT person may become a primary caregiver for a domestic partner or legal spouse, a close friend who is also LGBT and/or an aging parent or other relative — sometimes simultaneously. In the community at large, it is most common for typically unpaid caregivers such as spouses and adult children to provide the majority of care to older adults in the United States. In the LGBT community — with older adults twice as likely to be single and living alone, and three to four times less likely to have children — a family of choice is depended upon to provide support and care.
In September 2011, HHS announced new guidance to hospitals that participate in Medicaid and Medicare, outlining the rights of hospital visitors to choose their own visitors during a hospital stay, including a visitor who is a same-sex partner. The guidance also says that patients have the right to designate the person they want (including same sex partners) to make medical decisions on their behalf if they are incapacitated.
It is important for LGBT seniors and their caregivers to complete a few key legal documents establishing the right to make care decisions and to document treatment preferences for hospital and health care providers. (See the FCA fact sheet, Legal Issues for LGBT Caregivers.)
Rules governing resources to plan for and pay for long-term care remain an obstacle. We know that same-sex partners do not have access, as married older adults do, to federal family leave benefits, equivalent Medicaid spend-downs, Social Security benefits, bereavement leave, or automatic inheritance of jointly owned real estate and personal property. In addition to spousal impoverishment depending on the state, there may also be differences in how assets in same-sex couples are treated in regard to Medicaid liens, asset transfers and estate recovery.
As for all older adults, certain legal and financial decisions become increasingly important as we age. These documented decisions determine who has the responsibility to provide care, the power to make medical decisions and the legal authority to utilize financial resources on someone’s behalf if he or she is incapacitated. Without written protections in place, these relationships might not be legally recognized, and could easily be questioned or contested by a biological family member.
LGBT couples should draw up advance directives in order to guarantee their rights, even if they are legally married. A growing number of states are granting same-sex couples the right to obtain legal recognition of their relationships through marriage (to date, 35 states [see map here] plus the District of Columbia). Despite these gains, the inconsistencies in the law across the states may leave older adult same-sex couples and their family members legally vulnerable. All LGBT couples must clearly articulate their desires in legal documents to protect their right and wish to care for one another, leave property and possessions to one another through a will, or make funeral arrangements on the other’s behalf.
As a caregiver to a spouse, partner or friend, it is essential to discuss available legal protections and their limitations with the person for whom you care before that person becomes incapacitated. Please note that laws affecting LGBT care differ greatly from state to state — and even from city to city — so it is best to work with an attorney when putting together advance directives and other legal documents. For help finding an LGBT-friendly attorney in your area, contact the Legal Information Helpline of the National Center for Lesbian Rights.
Social isolation and lack of family and community support has a significant impact on the mental and physical health of older LGBT adults. Historically, coming out about one’s sexual orientation or gender identity was met with family rejection and social disenfranchisement. Today, LGBT older adults are likely to have experienced this rejection, in some part, from their family and peers. Increases in clinical depression and debilitating anxiety are correlated with a lack of social support.
The National Gay and Lesbian Task Force report, “No Golden Years at the End of the Rainbow,” states that:
“Access to immediate family support impacts aging LGBT adults’ ability to confront statistically higher rates of diabetes, hypertension, poor mental health and physical disability. As they age, many people rely on their family and community to provide transportation to and from doctors’ appointments and other critical care services necessary for maintaining wellness.” A 66-year-old lesbian who participated in the Aging and Health Report Study was quoted as saying, “Isolation, finding friend support, caregiving and health are the biggest issues older gay persons face. Who will be there for us, who will help care for us without judgment?”
In cities like San Francisco, Los Angeles, Boston and New York, with sizeable gay, lesbian, bisexual and transgender communities, some public and private agencies will have experience with caregiving issues and LGBT families — particularly in the two decades since the start of the AIDS epidemic. In less densely populated areas, where programs may have less opportunity to encounter and work with LGBT individuals and families, determining whether an agency will be welcoming and supportive may be more difficult.
How do you know if a service provider or organization is welcoming to LGBT individuals and families? Here are a few tips to consider:
LGBT communities across the nation have drafted resource guides to help senior community members and their caregivers to know their legal rights and learn about services where they will feel welcome. Here is an example of one resource created by LGBT advocacy and service organizations for California’s LGBT Seniors. A growing number of LGBT-specific services, such as senior housing communities, older adult health services and estate planning legal services are available or under development across the United States.
Local and national LGBT organizations, such as the SAGE — National Resource Center on LGBT Aging, are a vital resource for trustworthy information and for help in locating community agencies that are sensitive and supportive. Many areas have robust websites, hotlines and support groups that provide information anonymously online or by phone. Larger cities frequently have LGBT-specific medical clinics or other centers devoted to gay, lesbian, bisexual and transgender health and legal issues.
The art of growing old with the best possible physical, emotional and social health is important for all older adults. Thanks to high quality research and a greater willingness by LGBT older adults to participate in studies and sharing their stories, we are progressing further along the path towards making optimal well-being a reality for all older adults, including LGBT community members. The organizations and resources mentioned throughout this column and listed below are welcoming and open to providing information, education, support and service without judgment.
The Aging and Health Report: Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults
Preparing for the Changing Horizon: Dementia awareness for Older LGBT Adults from Diverse Communities
“GEN SILENT”: Movie Documentary
Los Angeles LGBT Center
The National LGBT Taskforce
Openhouse : Housing Services and Community for LGBT Seniors
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
Leah Eskenazi, MSW, is Director of Operations for Family Caregiver Alliance, based in San Francisco, California.
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