A first-of-its-kind support group that will address the unique challenges facing LGBT caregivers, and the caregivers to LGBT Alzheimer's patients, will hold its inaugural session Saturday, Jan. 26, at 10 a.m. at the Howard Brown Health Center (HBHC), with subsequent meetings to take placeat the same time and locationon the fourth Saturday of every month.
The Alzheimer's Association Greater Illinois Chapter is hosting the group and providing the trained facilitator, who also serves on the organization's diversity committee. The association had been building bridges to the LGBT community in diversity initiatives. Under Stephanie Herro, manager of support services and an out lesbian, the support group came to fruition.
"There are specific issues facing LGBT seniors in general, but also for those who are caregivers for people with dementia," Herro told Windy City Times. "We wanted to give people a place where they feel comfortable and welcome and able to freely speak about those specific issues that differ from the general population."
"One significant issue," Herro said, "is seeing people having to go back into the closet when they're placed in facilities, either themselves or not feeling like their loved ones can come visit them in an open and honest way, whether it be a partner or other family members and friends."
Herro knew of instances in some faith-based facilities where LGBT patients were badgered to repent, others were read Bible passages, all in an effort "to get them to "convert" in the last phase of their life when they're already suffering from a cognitive disability. These things are happening, unfortunately."
Herro also said, "LGBT seniors are more likely to isolate due to either not having anybody or feeling that they aren't able to be themselves." For the caregivers, such treatment of their loved ones "can add a significant amount of stress. Depression rates are through the roof for caregivers in general, and then to add on these other challenges, I can only imagine would increase all of that."
Another issue, according to Herro, is that "a large portion of the population of LGBT adults don't have other people in their life." Herro stated she has frequently been asked by LGBT seniors, "I'm all alone, I don't have anybodywhat happens if I develop dementia? What's gonna happen to me?"
For Herro, being confronted by those questions "was really eye-opening." According to the association's 2012 report, 800,000 of the 5.4 million U.S. residents living with Alzheimer's disease reside alone.
"There's a lot of fear in the [LGBT] community about this happening," Herro said. "It's a big fear for older adults in general, but then you add in some of the challenges of LGBT seniors and it becomes even more frightening for them."
Another detriment to LGBT adults is that marriage inequality frustrates even those who have significant others, which is why Herro urged "that people's advanced directives are in place, so things like the Do Not Resuscitate, a will, having a power of attorney in placeall of those things are even more important for LGBT seniors, because we don't have the same rights as the general population."
Herro added, "I think having a caregiver support group for people who are either LGBT themselves and caring for a partner, or if you're LGBT adult children who are caring for their parents, I think having a place where they're safe to express these extra challenges and extra stresses of caregiving, where they don't feel like they're going to be judged, is really important."
Currently, this LGBT support group at HBHC will be the only such entity, but Herro added she "would love to have LGBT support groups anywhere and everywhere they're needed," whether it's throughout the city or into the suburbs.
Herro said that many of the facilitators are former caregivers themselves, and some are also professionals in the field. She personally trains all of the support group facilitators in every aspect, from "information about the Alzheimer's Association and the services we offer, to group dynamics in group process and how to manage difficult situations in groups, how to manage" their own emotional triggers.
There is no cure, nor even any prevention, for Alzheimer's, a progressive condition caused when protein deposits impair nerve cells in the brain from communicating. The disease has spiked from being the twelfth leading cause of death in 1998 to the sixth-leading cause only a decade later. In that same time, deaths due to breast cancer, prostate cancer, heart disease, stroke and HIV all decreased.
Despite the quantitative evidence, Herro said Alzheimer's "doesn't get the same amount of attention as some of the other leading causes of death might in the country. With that lack of attention, there's a lack of research money, and that's a big thing that the Alzheimer's Association does in terms of public policy changes and in advocacy; trying to get the government to help understand that there needs to be more attention paid to this disease."
Based on current projections, Herro warned, "There needs to be more money from the [National Institutes of Health] going towards Alzheimer's research because it is going to continue to grow and it's going to be an epidemic if there's not an opportunity to find a cure by the year 2050."
To find more information about local support groups or to contact the facilitators directly, people should visit www.alzheimers-illinois.org/support_groups.