By Holly Deni

My recent attendance at ASA’s 2012 Aging in America Conference in Washington, D.C., got me thinking. Isn’t that always what happens after conferences? You return home full of ideas and inspirations, all needing an outlet. So, I’m very pleased that my guest-editorship of this special section of AgeBlog coincides with my return from this dynamic conference. It gives me a chance to put LGBT caregivers and caregiving in the spotlight for both the LAIN constituent group and the ASA membership at large.

Rosalyn Carter said, “There are only four kinds of people in the world—those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Given the universality of the caregiving or care-receiving experience, why do we find it still so plagued by depression, isolation, abuse and ignorance—especially for the LGBT population?

“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?” This quote comes from a 66-year-old lesbian, but might have been spoken by any LGBT elder in the unenviable position of being an underserved minority, especially in the coming age-wave era.

Who will be there to care for the elderly transgender man who has lung cancer, or the gray-haired lesbian with AIDS? As we age, possibly outliving our partners, our biological families and families of choice, will we feel free to disclose our identities to the strangers providing our care? Will the traditional support systems readily available to the general population be as open and welcoming to the queers among them? Will we see the generation who fought so hard for pride and respect retreat back to the closet in exchange for being treated with dignity by the health- and long-term care systems?

The woman quoted above was a participant in Caring and Aging with Pride, the first federally funded project that examined the well-being of LGBT elders. Coordinated by The National LGBT Health and Aging Center, the project surveyed 2,560 self-identified LGBT people, ages 50 to 95. The findings are available here, CaringAndAging.org, and provide a rich and nuanced picture of how our elders are meeting the challenges of getting older.

The information analyzed in the report includes some of the most extensive and broadly representational data collected to date about LGBT caregivers and caregiving. Twenty-seven percent of respondents assist someone close to them who has a health issue or other needs. Many of these unpaid caregivers (35 percent) are taking care of a partner or spouse. Sixteen percent provide care to a parent or parent-in-law, 7 percent to another relative and 7 percent help out a non-relative, such as a neighbor or friend.

In the general population, 90 percent of caregivers who assist those 50 and older are related to them. But among the LGBT caregivers represented in the project, 32 percent were assisting a friend or neighbor. This level of caregiving by informally related people presents unique problems for our community. Among the participant care receivers, 36 percent did not have in place a durable power of attorney for healthcare. That means that besides having to deal with prejudice that might be displayed by healthcare providers, LGBT caregivers are called upon to advocate for people for whom they have no legal or familial standing. These caregiver respondents indicated that they needed more help in preparing to make decisions for those under their care.

Another unique finding of this project revealed that 44 percent of the caregivers indicated that the person for whom they provide care is also the person who helps them most if they are ill or need help. This was echoed in another statistic, which showed that caregivers were nearly twice as likely as non-caregivers to be receiving care themselves. The dyadic nature of the caregiver-care-recipient relationship leads to concerns that both sides manifest negative health outcomes like depression.

Many POC (people of color) elders within our community face increased disparities in access to healthcare, as well as further marginalization by traditional programs serving the elderly. These disparities create an added burden for caregivers and can lead to less-successful outcomes in older age. These inequities must be addressed, both within and outside the LGBT community.

All is not gloom and doom, however. In the project, caregivers were more likely than other respondents to be partnered or married (55 percent vs. 40 percent), less likely to live alone (41 percent vs. 60 percent) and had significantly higher levels of social support. Eighty-nine percent of respondents felt good about belonging to their LGBT communities, and more than 91 percent engage regularly in wellness activities. This data shows inherent resilience that may act as a counterweight to the negative aspects reported.

According to our reporters for this issue, there are many reasons to believe that, as we have done in the past around the issues of AIDS and civil rights, the LGBT community will come together to figure out the best ways to provide care to our friends, lovers, neighbors and companions who are aging and in need of assistance.

Nancy Bereano tells us about one community’s volunteer efforts to supply companion care and assistance to its aging and ill LGBT members. The Share the Care model in Ithaca grew out of an observed need for LGBT or LGBT-friendly “strangers” who might be willing to assist those who are home-bound. The result is a volunteer army that can come to visit LGBT elders without causing any stress or fear of being outed.

Chris MacLellan’s story is a more personal one. When his older partner was diagnosed with esophageal cancer, Chris became an immediate caregiver and advocate as well as a life-companion. He shares a snapshot here of the larger caregiving experience he is living and documenting in his blog, The Purple Jacket.

Not all the caregiving that happens in the LGBT community will come from partners, friends or family. Articles written by small business owner Paul Blom and social worker Julie Ellingson explore the nature of paid caregiving in the LGBT community.

And finally, national initiatives like SAGE’s SAGECAP and the LGBT Caregiver Resource Center, described here by Scott French, are now available online, providing much-needed access to resources for caregivers who might otherwise be isolated by geographic location.

Talk about a lot to think about…read on!

Holly Deni is a retired public librarian who is repurposing herself as an elder care planner. She is a Registered Financial Gerontologist and is attending the Gerontology Certificate program at Rutgers University. 

This article was brought you by the editorial board of ASA’s LGBT Aging Issues Network (LAIN).