We strive to be inclusive when discussing any minority group, so before we discuss caregiving by those and for those who are in the LGBTQ/LGBTQIA+ community, let’s first define terms and the definitions of the acronym. According to most sources, including GLAAD (Gay and Lesbian Alliance Against Defamation), LGBTQIA stands for:
Q-Queer or questioning, sometimes both
A-Asexual or Allies of the LGBTQI community
+ the “plus” represents those who do not identify with one of the letters in the acronym
Terms which may be helpful:
Gender: The socially constructed roles, behaviors and attributes that serve as cultural indicators of someone’s personal and social identity.
Gender identity: A person’s emotional and psychological sense of their gender, which may not align with their sex they were born with.
Sex: Sex is different from gender in the scientific community. Sex is assigned at birth based on a newborn’s physical and biological characteristics (chromosomes, hormone prevalence and anatomy). Generally, a newborn’s sex is assigned male or female but some states and countries provide a third option for those who are intersex.
Non-binary: A common terms to describe people who don’t identify as male or female… Gender nonconforming.
Transgender: Unlike non-binary people, transgender people may identify as male or female.
Intersex: An umbrella term describing people born with reproductive or sexual anatomy and/or a chromosome patter that can’t be classified as typically male or female.
Queer: is anything outside of the dominant narrative. For example, maybe you are one of the letters in LGBT but you could be all of the letters and not knowing is ok. Some people may use this term (or genderqueer) to describe their gender identity and/or gender expression. (some believe this term is still a homophobic slur, best to ask or see how the person you’re speaking with uses it)
Pansexual: An adjective for those who are attracted to all types of people, regardless of their gender or sexual orientation.
For simplification of our discussion, we will use the term LGBT as an umbrella to include those categories listed in LGBTQ+.
There are special considerations for those in the LGBT community when it comes to aging and caregiving. In addition to (or in place of) their families of origin, most LBGT people have strong bonds with their families of choice. Nearly two-thirds of LGBT adults say they consider their friends, lovers and partners to be their chosen family. This group is twice as likely to be single and living alone, and three to four times less likely to children, so the family of choice is crucial when it comes to aging and caregiving support. It’s important that those chosen family members protect their legal rights to make decisions for their loved one.
Within the last ten years, regulations at the federal level allowed patients at most hospitals to decide who has visitation and who can make medical decisions on their behalf regardless of sexual orientation, gender identity or the makeup of the family. A memorandum issued by President Obama called on hospitals “that participate in Medicare or Medicaid to respect the rights of patients to designate visitors” and it recommended no discrimination based on “race, color, national origin, sex, sexual orientation, gender identity or disability.” Still, there are some cases where personnel are confused or continue to deny health care proxies to same-sex couples. We suggest you see the resources from the Human Rights Campaign.
Even though same-sex marriage is recognized in all the states, often lesbian, gay, bisexual and transgender people (in couples or not) still face challenging legal and financial decisions as they age. We would urge LGBT seniors and caregivers to fill out basic legal documents for healthcare providers and hospitals to have on hand. These would establish the right to make decisions and to document treatment preferences. Unlike many heterosexual aging adults who have extended families through marriage over generations, many LGBT people turn to their family of choice for caregiving needs. Without written protections in place, these chosen family members will not be legally recognized. This can be heartbreaking and deadly when the person you love is incapacitated and you, (legally) can’t do anything to help. You may want to consider discussing this with an LGBT-friendly attorney. This list from Family Caregiver Alliance is a good guide for what you need to think about.
How Do You Find Support?
Many LGBT people have endured decades of harassment or felt stigmatized resulting in the fact that older adults in this community are five times less likely to seek medical care or social services. Sometimes older LGBT people feel disconnected from the larger community and caregivers need to try to find ways to combat isolation. Their LGBT loved ones may become more guarded about who they are as they age. This can create distrust that might cause caregivers and elders not to engage until they feel welcomed. It’s essential for care providers to anticipate non-traditional family structures and provide the same support as they would for traditional families. If you are a caregiver, support networks are essential. Seek out LGBT organizations in your community who can help you find where people in the community are congregating. If that proves too challenging, look at virtual communities. Start here:
It’s challenging for caregivers to find additional support that may be needed for their loved ones.
For LGBT older adults, this can be even more difficult because of a fear of inadequate treatment or discrimination for being LGBT. Feelings of isolation can be made worse by postponing reaching out for care and support. At Leeza’s Care Connection, we are here to help. Our teams are ready with understanding and resources. In many communities, there are LGBT health organizations and LGBT senior advocacy groups that can provide referrals and support.
Unfortunately, 41 states don’t currently have housing or public accommodations prohibiting discrimination against people based on their sexual orientation. If your loved one is in a residential community and is harassed by a roommate or another resident or staff member, the local Office on Aging or the Area Agency on Aging in your county for options, mediation and filing complaints.
It can be hurtful for LGBT people to hear assumptions that they don’t have “family” responsibilities if they don’t have children, or if they are not married to their partner, so they can be more available as a caregiver.
As a caregiver, you may be “out” to your siblings and relatives, but they might not understand or appreciate that being part of a chosen family means you have serious obligations and commitments. Perhaps there is an assumption that you will become the primary caregiver in your family. You may need help setting boundaries through a family meeting.
Often, to live openly and honestly, many LGBT people have had to choose to live without support from their family of origin. If this is you, it is important to reach out to chosen family members and others in the community to be there for your caregiving needs. There are Area Agencies on Aging which provide services for family caregivers defined as “an adult family member, or another individual, who is an informal provider of in-home and community care to an older individual”. You can get things like legal advice and access to respite or a break from caregiving. Sometimes there is a wide range of familiarity with LGBT-specific issues at these agencies, but keep trying. Ask for someone who has training or experience working with LGBT seniors and caregivers. At Leeza’s Care Connection, we can help.
Tim Johnston, the Senior Director of National Projects for SAGE, (Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders) the nation’s largest advocacy organization for LGBT elders provided these guides for providers to make sure LGBT residents feel welcome and safe. This checklist might be helpful for you as a caregiver or when you are considering placement or in-home care. Make sure the providers you are looking at have these best practices:
1. Mirroring Language: The LGBT senior may use words like “friend” or “roommate” to describe their significant other. By mirroring this language it sends a message of respect and communicates interest and openness.
2. Open-ended Questions: This helps the caregiver learn about the resident’s history and support network. Questions like, “Tell me about yourself” and “who is important in your life” will lead to open lines of communication that build understanding and inclusion.
3. Inclusive Policies: The organization’s policies around gender identity, gender expression, sexual orientation, and HIV status, must be effectively communicated and consistently enforced. It’s the only way to build a culture of diversity and inclusion.
4. Training: Select vendors with proven expertise with LGBT communities and ensure the content reflects a comprehensive perspective and addresses diversity in terms of sexual orientation and gender identity. Remember: effective training is the foundation for excellent care.