Caregiving in the LGBTQ+ Community

Caregiving in the LGBTQ+ Community

Caregiving is emerging as an increasingly important area of focus in the social services sphere, and service providers are seeking effective ways to support the growing caregiving population. While all caregivers can benefit from supportive services, not all caregivers are the same. Those who belong to the lesbian, gay, bisexual, transgender, questioning/queer (LGBTQ+) community have much in common with other caregivers, but also have unique experiences and needs. Successfully supporting LGBTQ+ caregivers requires an understanding of these differences as well as modified interventions designed to meet their needs. This module offers an overview of what caregiving looks like in the LGBTQ+ community.

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What does LGBTQ+ mean?

LGBTQ+ is an abbreviation that stands for lesbian, gay, bisexual, transgender, queer, or questioning, among others. “Plus” represents other sexual identities. The first four letters of the abbreviation have been commonly used since the 1990s. However, recently, there has been an inclusion of other sexual identities to create a better inclusion.

LGBTQ+ Older Adults

LGBTQ+ older adults make up 2.7 million of the rapidly growing aging population in the United States. By 2030, that number is expected to more than double. 

Many LGBTQ+ older adults have experienced a lifetime of discrimination and social stigma, as well as institutionalized discrimination in health care, employment, and social services. Because of this history, LGBTQ+ older adults as a group experience social, financial, physical and mental health disparities. They tend to be at a higher risk for developing chronic diseases, being diagnosed with depression and anxiety, living in poverty, and experiencing social isolation. While the provision of social services and quality medical care can help to alleviate some of these challenges, research shows that older LGBTQ+ adults are significantly less likely to access medical and social services than their non-LGBTQ+ peers. This can lead to a delay in care, premature institutionalization, and even premature death.

Though the statistics seem troubling, the older LGBTQ+ population is in fact a vibrant and resilient community, who have persevered by coming together and caring for their own. An example of this resilience can be found in the ways in which the LGBTQ+ community came together during the HIV/AIDS crisis in the 1980s. It was LGBTQ+ people who stepped up to provide caregiving support for lovers, friends, and even strangers who were living with HIV/AIDS. As a result, social networks were expanded and strengthened. Survivors of that time have continued to rely on these care networks.

Caregiving

Caregiving is the act of providing physical, psychological, and/or emotional assistance to another person, typically for an extended period of time. These caregivers may be family or may be informal non-family caregivers. As people age, their needs may become greater and their abilities may start to decline. In the event of a serious health problem, the onset of dementia, or other debilitating circumstances, care may be needed as much as 24 hours a day to keep the older adult safe.

Though long-term care facilities may be an option, most people prefer to “age in place,” meaning they want to remain in their homes and communities for as long as they can. In most cases, this is made possible by the assistance of caregivers—unpaid family members and others who can provide the assistance needed for the older adult to maintain a good quality of life.

According to Caregiving in the U.S., a 2015 study by AARP and The National Alliance for Caregiving, there are 34.2 million Americans who provide unpaid care to another adult who is over the age of 50. The care they provide is a critical part of the aging service provider network, as it accounts for over 85% of all elder care in the U.S. These unpaid hours of care for older adults are valued at $522 billion annually.

Most people will experience caregiving as an important, meaningful, yet challenging role. It is very common for caregivers to feel stressed or overwhelmed, especially as they try to balance caregiving with other aspects of their lives, such as work or raising children. Many caregivers neglect their own health and well being while they are busy caring for an older adult. They tend to skip their own doctor’s appointments, give up time with friends, and decrease their exercise, sleep, or relaxation time. These health and lifestyle practices tend to lead to health disparities among caregivers, who experience increased rates of depression, anxiety, isolation, financial strain, poorer self-reported health, and increased mortality risk. 

Though there is a network of supportive services available for caregivers, many do not know how to access those services or, commonly, do not realize that they are caregivers at all. Most caregivers will say that they are “just doing the right thing,” “helping a friend,” or “being a good son,” having no idea that they belong to a large cohort of people who share similar feelings and experiences. They may also reject the idea that they could use any support or assistance themselves. At times, caregiving can have a negative impact on both the caregiver and the person they are caring for, and that proper support can help to alleviate that impact.

DID YOU KNOW? Unpaid caregiving accounts for over 85% of elder care in the U.S.?

Caregiving in the LGBTQ Community

LGBTQ+ caregivers make up 9% of the 34.2 million Americans caring for adults over age 50, which is about 3 million people. LGBTQ+ people also become caregivers at a slightly higher rate than their non-LGBTQ+ peers: 1 in 5 LGBTQ people is providing care for another adult, compared to 1 in 6 non-LGBTQ+ people. LGBTQ+ caregivers come from a variety of different backgrounds and provide care in a variety of different relationship structures. There are some common themes in the unique needs and experiences of most LGBTQ+ caregivers, as well as those who are caring for LGBTQ+ older adults but may not be LGBTQ+-identified themselves. 

In the general population, the vast majority of caregivers (85%) are caring for either a parent, spouse, or other relative. Looking at that statistic in reverse, we see that when older adults need care, they typically turn to a child, spouse, or other relative for assistance. LGBTQ+ older adults are 4 times less likely to have children and twice as likely to be single as their non- LGBTQ+ peers. They may also be estranged from their biological or legal family members if those people do not accept their sexual orientation and/or gender identity.

Families of Choice

If an LGBTQ+ older adult has no legal family to rely on, who cares for them?

In the absence of people to rely on from their families of origin, LGBTQ+ individuals have a long history of creating Families of Choice, typically made up of friends, partners, ex-partners, and perhaps a few relatives. As an LGBTQ+ person ages, they may turn to their family of choice to ensure their social, physical and emotional well-being. It is common for the majority of an LGBTQ+ older adult’s close friends and chosen family to be older adults themselves, which means that many older LGBTQ+ individuals rely on one another for caregiving, and many LGBTQ+ older adults find themselves becoming caregivers.

LGBTQ+ people become caregivers at a higher rate than non-LGBTQ+ people, and make up 9% of the caregivers in the United States. Yet many LGBTQ+ caregivers continue to go “under the radar” of aging service providers. This is partially because of a lack of understanding about what “LGBTQ+ caregiving” is and who the people in this category typically are.

Three Types of Caregivers

When we talk about “LGBTQ+ caregiving,” we are referring to three primary groups, each of which has its own unique challenges and experiences:

1 – LGBTQ+ Older Adults Caring for Other LGBTQ+ Older Adults

Examples: A gay man caring for his husband; a bisexual woman caring for her ex-partner.

The peer networks where LGBTQ+ older adults find care stem from families of choice, and provide critical support in times of need, often in the absence of biological family. These caregivers generally do not see themselves as caregivers; they simply see themselves as “doing the right thing” for a close friend or partner. This is typical of all caregivers, but may be exacerbated in the LGBTQ+ community because of non-traditional family structures.

The term Family Caregiver may be particularly alienating to this group, both because they are not accustomed to their families of choice being recognized as “families,” and because so many have strained relationships with their families of origin.

When the caregiver and the care recipient are both older adults, the caregiver may experience a diminished capacity to provide some types of assistance. That can be problematic, especially if there are few others to step in. For example, if the primary caregiver is hospitalized, what happens to the care recipient? Additionally, older LGBTQ+ people frequently adhere to a cultural norm of “taking care of our own,” and may be particularly reluctant to reach out to service providers or to accept outside help when it is offered. LGBTQ+ older adults are more likely to be caring for one another in isolation, without other people involved to share the burden. Only about half of all caregivers have another unpaid caregiver to help them, and about 2/3 of family-of-choice caregivers, many of whom identify as LGBTQ+, provide sole care (43%) or are the primary caregiver (25%). Having just one caregiver means that the person receiving care lacks a safety net and that the caregiver is likely to experience an increased burden, both of which could ultimately jeopardize the care recipient’s ability to age in place.

2 – Caregivers Who Happen to Identify as LGBTQ+

Example: A lesbian daughter caring for her aging mother

When a group of siblings needs to provide care for an aging parent, it is common for the LGBTQ+ member of the group to become a primary caregiver. This may be because families of origin perceive their LGBTQ+ relatives to have more time and availability—especially if they do not have children or are not open to their families about their relationships and families of choice.

These caregivers are primarily young or middle-aged adults caring for their aging parents. Resources and services intended for general or non-LGBTQ+ audiences will likely be more relevant to this group because the relationship between the caregiver and a parent is a common one recognized by many service providers. There are, however, some specific issues that arise for these caregivers.

LGBTQ+ caregivers may seek out LGBTQ+ affirming services or facilities for their loved ones, so that they will feel welcomed and respected. However, depending on the attitudes of their care recipient, they may be reluctant to talk about their identities or even involve a partner in providing care. Also noteworthy is that these LGBTQ+ caregivers may be providing care to a family member with whom there is a strained relationship. It is not uncommon to hear of an LGBTQ+ individual caring for an ill parent who never accepted his or her identity. These caregivers may require some additional emotional support to cope with what may be the burden of caregiving.

3. Others Caring for LGBTQ+ Older Adults

Examples: A nephew caring for his transgender aunt; a neighbor concerned about the isolated gay man next door.

Lastly, non-LGBTQ+ people caring for LGBTQ+ older adults may personally feel welcomed in a wide variety of organizations and have other supportive resources for their own well-being. However, when seeking resources for their care recipient they may be surprised to find limited LGBTQ+ specific or openly affirming services. Because LGBTQ+ older adults are often quite isolated, an observant neighbor, acquaintance, or distant relative may be the one who calls an aging service provider to seek help for that person. If they know the individual is one of the LGBTQ+ community, they may seek assistance locating an LGBTQ+ program or help from the local LGBTQ+ community. These non-LGBTQ+ caregivers provide access to some of the most isolated members of the LGBTQ+ aging community.

IN CONCLUSION: The most vulnerable of these groups is LGBTQ+ older adults caring for their LGBTQ+ peers. These caregivers experience compounded health disparities, and many have the added stress of knowing that there is no one else to care for their loved one should they need to relinquish their caregiving duties. They may be reluctant to access services for either themselves or their loved ones and require particular attention to engage and support.

Common Issues Facing LGBTQ+ Caregivers

Legal Recognition of Families of Choice

For many LGBTQ+ people, families of choice are the cornerstones of caregiving. These chosen families provide social, emotional, and physical support, and often serve as advocates when medical needs arise. However, most families of choice are not afforded any legal recognition or protection.  Service providers may not think to inquire about or include these people in their work. It is important to recognize these relationships and to provide support in completing paperwork that ensures the wishes of the care recipient are recognized.

Guidelines released by the Obama administration in 2011 extended hospital visitation rights to individuals regardless of sexual orientation, gender identity, or family makeup. However, in the absence of advance directives like medical powers of attorney that specifically name the person(s) appointed by an individual to make medical decisions on their behalf, hospital personnel are obligated to rely on the patient’s next of kin for any medical decisions. Assisting the care recipient with completing advance directives is essential to help ensure that their caregiver has the right to make medical decisions during a time of medical crisis. You’ll find more information about advance directives at the end of this education module.

Likelihood to Access Services

LGBTQ+ older adults are five times less likely to seek medical care or social services than the general public. This is understandable when considering that older LGBTQ+ individuals endured decades of stigma and even harassment from providers. By avoiding medical care, they are often putting themselves at risk for negative health and mental health outcomes. With this strong mistrust and skepticism towards providers, some LGBTQ+ caregivers and the LGBTQ+ individuals they care for may choose to keep their identities secret, or simply not engage in services unless they are certain that they will be welcomed.

When they do reach out to providers, caregivers may be reluctant to share the nature of their relationship, either to protect their loved one from being identified, or for fear of being shunned or dismissed from their loved one’s care team. This lack of transparency may not only invalidate the identity of the caregiver but has serious ramifications in providing comprehensive care and services. In order to support LGBTQ+ older adults and caregivers, it is crucial for care providers to anticipate non-traditional family structures and provide support to them as they would caregivers who are traditionally relatives.

Financial Concerns

LGBTQ+ older adults are less likely to be financially ready for life after retirement. The financial barriers can make it difficult for an LGBTQ+ older adult to coordinate and afford additional support and resources, thus increasing their reliance on loved ones. When the care recipient has fewer resources, caregivers may feel pressure to help provide health care, food, and other essentials for their loved one and, in turn, neglect themselves. Caregivers who qualify for public benefits or other assistance themselves may not seek them out because they are too busy providing care.

Caregiver Burnout and Isolation

The act of providing physical, emotional, and perhaps financial support to an ill or aging person can lead to isolation, stress, and eventually caregiver burnout. When a caregiver burns out it may result in their care recipient being temporarily neglected or being moved into long-term care prematurely. Caregiving in isolation, without others to share the burden, may increase the risk of burnout.

Though caregivers often express the benefits of caregiving, such as forming a close bond with the care recipient or a sense of satisfaction from giving back, they are also at high risk for emotional distress and poor health outcomes. The strain of putting another person’s needs first can be compounded by employment and other time commitments outside of caregiving, by the caregiver not being out in their social or work life, or by a conflict in the relationship (as in the case of an LGBTQ+ child caregiving for an unsupportive parent). Although all caregivers are susceptible to caregiver burnout, the LGBTQ+ caregiver is likely to experience some additional factors that can increase caregiver burden and lead them to burn out more quickly.

Conclusion

Whether an LGBTQ+ caregiver is providing care for a member of their family of origin or family of choice, it is apparent that this population is in need of supportive services. It is important to understand the complexities and challenges LGBTQ+ individuals face, as well as the unique issues of LGBTQ+ caregiving in light of what is known about caregivers in general. By reaching a point of understanding, organizations can begin to develop meaningful and approachable direct services and support for LGBTQ+ caregivers.

For information and resources, 

Resources for Caregivers

  • Call 2-1-1 throughout Texas for information and access to health and human service information for all ages.
  • Call 800-252-9240 to find local Texas Area Agency on Aging.
  • Call 800-677-1116 – Elder Care Locator service to find help throughout the U.S.

Use resources such as Area Agency on Aging (AAA). Types of assistance provided by AAAs:

  • Information and referral
  • Caregiver education and training
  • Caregiver respite
  • Caregiver support coordination
  • Case management
  • Transportation assistance

Assistance available through AAAs for persons age 60 and older may include:

  • Benefits counseling
  • Ombudsman – advocacy for those who live in nursing homes and assisted living facilities
  • Home-delivered meals
  • Congregate meals
  • Light housekeeping

Be sure to check out our Resource Directory, FAQ, and Educational Events Calendar for more great information! Permission is granted to duplicate any and all parts of this page to use in education programs supporting family members caring for elders. 

Source: SAGEUSA.org – Written by Daniel B. Stewart, MSG and Alex Kent, MPA

Reviewed June 2023
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