Medical research often excludes or overlooks LGBT people, making their needs as a community and as individuals challenging to identify. As a result, LGBT people often don’t get the care they need. But Utah’s chapter of the Alzheimer’s Association and SAGE Utah are looking to change that for LGBT people facing Alzheimer’s disease and other forms of dementia.
Alzheimer’s disease is a progressive form of dementia that impacts memory and other cognitive functions.
Since 2014, SAGE — the Utah Pride Center’s support and advocacy group for aging LGBT adults — and the association have created education programs at the center on several aspects of dementia, according to Kate Nederostek, program director of Alzheimer’s Association, Utah Chapter. These included such subjects as the 10 warning signs of Alzheimer’s disease, debunking the mysteries of Alzheimer’s, how to go about getting checked for forms of dementia, and programming related to caregivers.
This July, a groundbreaking medical study bolstered their efforts. Announced at the Alzheimer’s Association International Conference, “Dementia Prevalence Among Sexual Minority Older Adults” looked at the rates of Alzheimer’s and other forms of dementia among 3,718 self-described lesbian, gay, and bisexual adults from January 1, 2007, to July 31, 2016. It’s the first study to examine the rates among LGB adults who are HIV negative.
The study did not include transgender people. Its abstract does not mention the reason.
Nederostek, who also serves on SAGE’s committee, welcomed the study.
“It gives us more information about how, and how much, the LGB population is affected by dementia, and how we can potentially better service them,” she said.
Common risk factors for all forms of dementia include depression, head injuries, and heart conditions, like cardiovascular disease and diabetes. Heredity and age also play a part, as does HIV/AIDS. And while the study noted that rates of dementia were roughly similar between LGB and heterosexual people, Nederostek indicated that LGB people face additional risks their straight counterparts often do not.
“They tend to have higher rates of obesity, depression [than straight people], and in the lesbian population, higher rates of tobacco use and higher rates of cardiovascular disease, as well as higher rates of HIV/AIDS for gay men,” she noted, citing other medical research. “We also see higher risks of vascular disease and vascular dementia in the LGB community.”
Nederostek said another surprise the study found is that LGB individuals acquired dementia at younger ages than their straight peers.
“Participants generally had higher education than the general population, which seems like that should be protective, so we don’t know how that plays a role,” she added.
Jeremy Cunningham, Public Policy Director for the Alzheimer’s Association, Utah Chapter, said that two risk factors LGB people face surprised him: poverty and social isolation.
“You generally think, ‘Oh, this person is gay, and they don’t have children, so they have more disposable income,’ but that is not the case,” said Cunningham, who is gay. He noted that homophobia, transphobia, and lack of opportunity could make saving for retirement difficult for LGBT people.
He also noted that LGBT people tend to access medical care less than their cisgender, straight counterparts.
“And when they do they’re not truthful with their doctors,” he said. “Forty-four percent don’t tell their doctors they’re a member of the community, and up to 30 percent can’t access good continual medical care. That is huge.”
He added that prejudice against LGBT people could also complicate such things as entering care facilities.
“LGBT adults want to have a safe environment to express themselves,” he said. “Heterosexuals can assimilate into care, but a lot of LGBT people don’t want to [stay in the closet to go to one], so they lose their sexual identity and personal identity,” he said.
This lack of money and social networks, Cunningham said, places further stress on LGB people with dementia, which he says is already “extremely challenging” for both patients and their loved ones. To change that, he said the association and SAGE are calling for more culturally competent health care. As well as for people to “expand their definition of family” long before they reach their mid-60s — roughly the age people become vulnerable to dementia. It’s particularly important, he said, because LGBT seniors are more likely to live alone and not have children, both of which factor into traditional support networks for aging people.
“Often when people say the word ‘family,’ they mean the nuclear family — or biological and legal relatives,” he said. “Many LGBT people either do not have a relationship with their family of origin, or they may have strained relationships. Many do not have children or a partner. LGBT people may have a chosen family, or family of choice, who provide them with care and support.”
With these challenges in mind, Cunningham and Nederostek said they and SAGE want to expand their outreach to LGBT people with dementia. It includes an LGBT-friendly support group for caregivers — for whom accessing support can be difficult regardless of their sexual orientation or gender identity. Cunningham also emphasized the importance of helping people create social networks before they face dementia and other health challenges.
Cunningham said he also has high hopes for the Alzheimer’s Association’s new facility in St. George. He said he anticipates it can reach often-isolated rural Utahns with dementia, of all sexual orientations and gender identities.
“It is our goal is to increase access to care and support services for everyone and expand our reach,” Nederostek said, adding that she also hopes the landmark study will not be the only one of its kind.
“I’m hoping this is the launching pad for more stories because this one only tells us so much,” she said. “Research breeds more research, and I’m hoping additional studies will be more inclusive.”
For more information about SAGE and the Alzheimer’s Association, visit utahpridecenter.org/programs/about-sage-utah/ and alz.org.
The study is at bit.ly/lgb-dementia