Most of us don't like to think about getting older, although we admit it beats the alternative. But there are a lot of older LGBT people -- and will be even more in the next decades -- and as we age, we have to think about age-related conditions and whether they affect LGBT people differently than straight and cisgender folks. Unfortunately, there's a dearth of information on this subject.
A new study from the University of California, San Francisco, and Kaiser Permanente Division of Research in Oakland is a start toward rectifying that. At the Alzheimer's Association International Conference last month in Chicago, they presented the first dementia prevalence data from a large population of lesbian, gay, and bisexual older adults.
"It's important for us to make sure that all populations are studied and included in research," Rebecca Edelmayer, director of scientific engagement at the Alzheimer's Association, told The Advocate.
The study examined the prevalence of dementia among 3,718 sexual minority adults age 60 and older who participated in the Kaiser Permanente Research Program on Genes, Environment, and Health, with dementia diagnoses collected from medical records. Over nine years of follow-up, the researchers found the prevalence of dementia in this population to be 7.4 percent. That's actually slightly lower than the prevalence for the general population age 65 and up -- 10 percent, according to the Alzheimer's Association. (Sometimes dementia is Alzheimer's-related, sometimes not; these figures represent both types.)
The lower prevalence is little surprising given that LGB adults have a higher rate of some conditions thought to contribute to dementia, such as depression and cardiovascular disease. One factor in the study's finding of a lower prevalence of dementia among LGB people is that it looked at a slightly younger population than that represented in the Alzheimer's Association numbers, Edelmayer said. And in general, the LGB study highlights the need for more research on this population, she said. "This is very preliminary research," she noted.
"Current estimates suggest that more than 200,000 sexual minorities in the U.S. are living with dementia, but -- before our study -- almost nothing was known about the prevalence of dementia among people in this group who do not have HIV/AIDS-related dementia," said lead study author Jason Flatt, assistant professor at the Institute for Health & Aging at the UCSF School of Nursing, in the press release announcing the results. "Though our new findings provide important initial insights, future studies aimed at better understanding risk and risk factors for Alzheimer's and other dementias in older sexual minorities are greatly needed."
Significant rates of depression, hypertension (high blood pressure), stroke, and cardiovascular disease in the study population may be contributing factors to the level of dementia, the researchers said.
Among the study participants, 40.2 percent reported a previous diagnosis of hypertension, 20.8 percent depression, 16.1 percent diabetes, 12.7 percent cardiovascular disease, and 6 percent stroke. In addition, 7.5 percent reported being a current smoker and 45.3 percent a former smoker. LGBT people are at increased risk for depression compared to the general population, and they have higher rates of alcohol and tobacco use. Lesbians are at heightened risk of hypertension.
People in general are 2.3 times more likely to develop dementia if they also have depression, Edelmayer said in her interview with The Advocate. They are 69 percent more likely to develop it if they have diabetes and 56 percent more likely if they have hypertension. "These are all things for further study," she said.
The study also underlines the need for culturally competent health care, according to Edelmayer and the authors. The Alzheimer's Association and SAGE (Services and Advocacy for GLBT Elders) recently released an issue brief on how health care providers can better serve older LGBT people.
Despite advances in LGBT rights, the brief notes, LGBT elders still encounter discrimination and marginalization. They also sometimes lack support systems. They are twice as likely as heterosexuals to age without a spouse or partner, twice as likely to live alone, and three to four times less likely to have children.
Some older LGBT people are reluctant to seek health care or supportive services such as meal delivery, or to visit senior centers, because they fear discrimination. LGBT community centers in large cities often have programs tailored for elders, but many smaller towns lack an LGBT center. Moreover, a significant number are not out to their doctors. One study found that 40 percent of LGBT people in their 60s and 70s aren't out to their health care provider.
The issue brief makes 16 recommendations on how service providers and organizations for older people can better serve LGBT clients. Among them are:
* Expand your definition of family.
* Educate yourself and your staff on LGBT cultural competency.
* Find or create support groups specifically for LGBT people.
* Partner with local LGBT community groups and political organizations.
* Help LGBT people and their families with legal and financial planning
Culturally competent health care will become all the more crucial in the next few years, according to the brief. There are 2.7 million LGBT people over age 50, and that number will likely double over the next 15 years.
And that will undoubtedly mean more LGBT people with a dementia diagnosis. To expand research on Alzheimer's and other causes of dementia in LGBT people and other populations, of course, funding is needed. It's important to keep up the level of government funding, such as that managed by the National Institutes of Health, Edelmayer said. That might seem to be a challenge with a president and a Congress hostile to spending on social programs, but such research has bipartisan support, she commented. At the same time, it's always good to remind lawmakers to make such funding a priority, she added.
"It's important that we study dementia and Alzheimer's disease from all angles, and look at factors that will make the disease progress differently across all populations," she said.
Want more information? There's plenty at the Alzheimer's Association website, Alz.org. And if you need someone to talk to, the group has a 24/7 helpline, (800) 272-3900. You can find out more about SAGE at SAGEUSA.org, and contact the LGBT National Senior Hotline at (888) 234-7243.