ORLEANS — Susan Milton knew she would marry Cindy Eagar the moment their hands touched. The two, who now live in Orleans, met at a dinner party hosted by a mutual friend in Barnstable.
They sat side by side all evening, talking each other’s ears off, Milton said. At one point, they stepped outside to smoke. Milton lit her own cigarette, then offered her lighter to Eagar. As Eagar reached out to protect the flame from the wind, Milton recalls, “our hands touched, and it was magic.”
Milton and Eagar started seeing each other soon after that night and moved in together before the year was out. The year was 1984. Milton described Eagar as the life of the party, always social and surrounded by friends. They were both busy, too, with Milton working long hours as a reporter for the Cape Cod Times and Eagar teaching in the Barnstable Public Schools for most of the year and working odd jobs in the summer.
In 2010, after 26 years together, Milton noticed the first sign that something was amiss: Eagar began calling her and asking when she was going to be home. “That was very unusual,” Milton said.
A sudden change in behavior, especially relating to memory, is often the first sign of dementia. In 2011, Eagar took the Mini-Mental State Examination, a common assessment for cognitive disease. The results came back: Eagar had mild cognitive impairment, a diagnosis that often proceeds to Alzheimer’s.
“It was as if something had died,” Milton said. “Really, something had died. The future had died as we thought it was going to be.” They had caught the disease early, the neurologist told the couple, so they probably had four or five good years left.
“And we did,” said Milton.
Milton retired that year, and she and Eagar spent much of those next few years abroad. As they traveled, Eagar’s symptoms worsened. “Things changed from her saying, ‘Let’s go here’ and packing her own bags, to me packing her bags,” said Milton. “Cindy didn’t know where we were going.” They switched to cruise ships when other forms of travel became too challenging.
In 2013, Eagar participated in a medical study that was looking at how a particular chemical works in PET scans. It revealed that her hippocampus had begun to shrink, confirming the neurologist’s assessment.
Eagar is now somewhere between mid- and late-stage Alzheimer’s, according to Milton, and Milton is her primary caregiver. In many ways, Eagar is still herself, said Milton. She still enjoys having friends over, listening to music, watching their new cat play, and talking with her wife and children.
Nonetheless, nearly every aspect of Eagar’s life is now facilitated by Milton. She needs help dressing, getting meals, and moving from place to place. “Mostly,” Milton said, “she listens, offering one-word answers to questions, thanking helpers with a smile, apologizing for needing so much help, and asking to go to bed when she tires.”
Eagar and Milton’s story is a common one. There are more than seven million people in the U.S. with dementia, according to the Population Reference Bureau (PRB), and 6.5 million of these cases are caused by Alzheimer’s disease. As the U.S. population ages, this number is likely to increase — if current trends persist, 9 million people will have dementia by 2030, according to the PRB.
There is also a growing body of research to suggest that dementia is more prevalent among LGBTQ people than among their straight and cisgender counterparts.
A 2019 study led by Jason Flatt, an associate professor in the School of Nursing at the University of California San Francisco, found that LGBTQ people over age 65 are 29 percent more likely to report memory loss symptoms. Another study, focused on Medicare recipients and led by Jaclyn White, an associate professor with the Center for Health Promotion and Health Equity at the Brown University School of Public Health, found that nearly 20 percent of transgender people over age 65 have dementia, compared to 12 percent of cisgender people over 65.
The reasons for these trends are not known, but research suggests they are linked to the experiences that many LGBTQ people, especially older members of the community, have had throughout their lives.
LGBTQ adults are also disproportionately represented among caregivers: 9 percent of people caring for dementia patients self-identify as LGBTQ despite LGBTQ people making up only around 7 percent of the general population, according to the National Alliance for Caregiving.
Links to Life Experiences
Dementia refers to a whole group of diseases that involve a decline in cognitive ability. As a patient’s memory and thinking become more impaired, everyday activities become challenging. Dementia is also degenerative, causing a person’s cognitive abilities to decline irreparably. While dementia can be directly attributed to a variety of causes, such as HIV/AIDS and Huntington’s disease, the most common cause is Alzheimer’s disease.
The risk factors for dementia — meaning the characteristics of a patient that correlate with a higher likelihood of the disease — are extensive and varied. Some of these factors, like high blood pressure, poor diet, and lack of physical activity, correlate with many diseases. Some, however, are tied more closely to social factors, including depression, drug abuse, and social isolation.
Now, researchers are exploring how, for gay and trans people, the stresses and social pressures of living with prejudice and lack of acceptance may be a part of what triggers, or worsens, these cases of dementia.
Dementia, said Dr. Flatt, author of the 2019 study, “is almost more linked with your cumulative health and life experiences” than to any one cause. According to Flatt, some of the most prevalent risk factors for dementia are disproportionately common in the LGBTQ community. Depression, a major risk factor, is present at disproportionate levels, they said.
A National Institutes of Health survey found that both drug abuse and alcoholism are twice as prevalent among people identifying as gay, bisexual, lesbian, or pansexual as they are among heterosexual people.
The same is true for many other risk factors: PTSD, loneliness, a history of AIDS, and physical violence leading to head injuries are all more prevalent in LGBTQ populations. For people of color, who also tend to have higher rates of dementia, the intersection with their LGBTQ identities can compound the risk, said Flatt.
These risk factors, according to Flatt, go back to many LGBTQ people’s experiences with stigma and prejudice. This is especially true for LGBTQ people who are over 65, as they grew up in an era of even less social acceptance. “They’ve lived through a lifetime where our country said, ‘You’re an outcast. You’re not welcomed,’ ” said Flatt.
In their research interviewing dementia patients, Flatt met people who recounted traumatic experiences like getting outed and losing jobs because of their sexuality, being in a gay bar during a police raid, or being forced to be closeted while in the military. Many, too, had lost friends — and thereby support networks — in their 20s and 30s during the AIDS epidemic. “These are the seniors today,” Flatt said. “They lived through this.”
This increased risk makes dementia a significant public health concern for the Outer Cape, which has a large LGBTQ population. In the 2010 census, 163 of 1,000 couples in Provincetown reported as same-sex, more than any other town in the U.S. The population of Cape Cod is also old: the median age in Barnstable County was 53.9 years as of 2021, compared to 39.6 years statewide.
The Power of a Proxy
When members of the LGBTQ community develop dementia, they may face disproportionate challenges in being diagnosed and receiving appropriate care.
For one thing, dementia diagnoses often involve interviewing a caregiver or loved one who can attest to the symptoms the patient is exhibiting, according to Flatt. The problem, they said, is that “if you’re single, you don’t have a proxy.” And LGBTQ seniors are twice as likely to be single as their non-LGBTQ peers, according to the advocacy group SAGE. They may also be ostracized from their families because of their identities.
In this respect, Eagar was lucky — she had Milton. Milton was the one who first noticed Eager’s symptoms and all through the diagnosis and treatment process could serve as her “memory,” as Milton said. An early diagnosis like Eagar’s gives patients more time to plan and enjoy their time before their cognitive abilities decline dramatically.
It also allows for the possibility of treatments that can alleviate dementia symptoms and make the early part of the process less painful. Without help, however, these treatments are difficult to access.
Even with support from friends and family, some LGBTQ people are hesitant to engage with the medical system. Past discrimination in the vulnerable environment of a doctor’s office can discourage people from seeking treatment, even if it might help them. For trans people in particular, said Flatt, the health-care system is daunting.
“We know transgender people are reluctant to seek health care because they’re misgendered and mistreated,” they said.
“We grew up in a time when we daily risked losing a job, a rental, family, and friends,” Milton said.
She and Eagar have not felt stigmatized in medical encounters. “Even so,” she said, “I still take a deep breath before I proudly say, ‘This is Cindy. I am her wife.’ ”
For caregivers, dementia can be a lonely disease. They are called upon to bear an enormous burden, often suddenly, for a person who may or may not understand what is going on, all while knowing that the condition is likely to worsen. Milton found that she and other caregivers she got to know were loaded with questions: How do you get your partner to swallow their pills? How do you manage incontinence? How can you convince your partner to take a shower when they suddenly don’t want to be in water anymore?
“What do you do when you can’t take it anymore, and you feel like you’re going to scream?” Milton said.
She found answers to many of these questions in dementia support groups. In 2013, one of these support groups joined forces with the Alzheimer’s Family Support Center in Brewster. Both Milton and Eagar attend support groups with the AFSC.
AFSC was founded by Melanie Braverman and her wife, Molly Purdue. They had spent eight years living with and caring for Purdue’s mother in Provincetown after she was diagnosed with dementia. The two came to rely on their friends and family to help them through the stress of being caretakers.
“If it wasn’t for my community,” Purdue said, “I don’t know that we could have made it through that experience.”
The organization exists to help both patients and their caregivers with navigating dementia. “There’s a lot that families need to learn to be able to reduce the stress of caregiving,” Purdue said.
She said AFSC has seen the difficulties that LGBTQ people face with dementia. The organization has produced a video with the Mass. Council on Aging about the increased prevalence of dementia in the LGBTQ community in order to help caregivers, medical practitioners, and the public understand the issue.
Purdue said her organization puts a lot of effort into reaching LGBTQ people in particular. She finds it helps that the organization was founded by two lesbians, as they can recognize and be familiar with the challenges fellow members of their community face.
Despite dementia being incurable, Purdue said, it is not inevitable. A 2020 NIH study found that 35 percent of cases could be prevented if people changed their behaviors to address social risk factors — late-life depression, substance abuse, and social isolation among them.
If the LGBTQ community faces these problems disproportionately, making progress against dementia in this population will involve solving these issues for the community. Enabling people to lead healthier lives is the goal, Purdue said.
Flatt believes LGBTQ-oriented seniors’ organizations can be a crucial part of solving this issue. “We need programs in our community that make sure that you’re welcomed,” they said.
Flatt also said the general youth-orientation of the LGBTQ community needs to shift to include older people. “Our community used to not live into their 70s and 80s, and now they are,” they said. “In a sense, it’s a triumph.”
Milton said her wife’s dementia diagnosis has changed their relationship. Despite the challenges, however, the magic she felt with Eagar at that dinner party 39 years ago hasn’t left their marriage.
“Our magic is now in moments,” she said. “Holding hands and singing along, badly, to a love song on the radio. Singing our happy birthday duet to friends. Watching people and dogs at her beloved beach. Her smile as she listens to friends’ banter.
“There will always be magic,” she said.