Supporting LGBTQ+ Families Facing Dementia The HRC Foundation and the Alzheimer’s Association Form Partnership to Provide Resources and Spread Awareness

For Barbara Meehan, the fight to end Alzheimer’s disease is very personal. Meehan, also a lifelong advocate for equality and an HRC supporter since its early beginnings, has dedicated her advocacy work for the last 15 years to educating and supporting families affected by Alzheimer’s disease, especially members of the LGBTQ+ community.

Meehan learned about Alzheimer’s disease firsthand as a caregiver to her late partner of 35 years, Faye Miles. Meehan attributes her dedication to the cause to Miles.

“I do this for her…it is the way I can honor her memory,” Meehan said.

Meehan and Miles met in the fall of 1979 while working at Old Rochester Regional High School in Mattapoisett, Massachusetts. Meehan had just begun what would be a 24-year career as a high school guidance counselor when Miles, the physical education teacher, came by to introduce herself. They soon became friends and, later, life partners.

“That’s a cliché, isn’t it?” Meehan said, and laughed as she shared about their occupations.

Meehan and Miles spent the rest of their careers working together at the high school. During that time, neither Meehan, Miles, nor others openly acknowledged their relationship.

“They were different times. We couldn’t risk being out and open… especially while working in education,” said Meehan.

They kept their relationship quiet for the sake of their careers and safety.

In 2007, when Meehan approached retirement, she envisioned life with Miles would be full of travel, visiting family and friends, and playing golf. However, Meehan began to notice changes in Miles, who was seven years her senior.

“I knew there was something wrong,” said Meehan. “She was more forgetful and confused.”

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Meehan recounted a particularly telling moment from their anniversary a year before Miles’s diagnosis. Historically, Miles was a “good gift giver” who made a “big to-do” about her and Barbara’s anniversary. However, that year, Miles handed Barbara unwrapped gifts she had received from family members a few days prior. Miles was not acting like herself. Shortly after, with a referral to a local neurologist, Miles received a diagnosis at the age of 68 of mild cognitive impairment, which can be an early stage of Alzheimer's.

Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia. Dementia is the umbrella term for a group of symptoms that typically include difficulties with memory, problem-solving skills, language and other thinking skills. People with Alzheimer’s and dementia experience memory changes and skill loss that progressively disrupts daily life. In the early stages of the disease, memory loss is mild. Black, Hispanic and Native Americans are more likely to develop Alzheimer's than White Americans, and almost two-thirds of Americans living with the disease are women.

As the disease progresses, individuals with dementia begin to lose more skills, exhibit poor judgment and have difficulty with mood regulation. With late-stage Alzheimer’s, people require around-the-clock personal care, and lose the ability to hold a conversation and respond to their environment. Research shows, on average, people with Alzheimer’s and related dementia live 5-8 years after receiving a diagnosis. There is no cure, but early detection and early connection to resources can make a positive impact on quality of life.

over 7% of the 6.5 million Americans with Alzheimer’s are LGBTQ+
455k estimated number of LGBTQ+ Americans living with Alzheimer's

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Studies show over 7% of the 6.5 million Americans with Alzheimer’s are LGBTQ+. Emerging research affirms LGBTQ+ individuals are at a greater risk of developing memory loss compared to straight, cisgender people. In addition to increased risk, LGBTQ+ people face additional challenges of invisibility in healthcare, finding inclusive care, and connecting to support. In light of these challenges, the HRC Foundation and the Alzheimer’s Association formed a partnership aimed at providing Alzheimer’s disease information and resources to LGBTQ+ communities. With each organization’s presence across the country, the partnership seeks to expand knowledge, access and support for LGBTQ+ people and their families impacted by Alzheimer’s and other dementias.

It was a year after Miles’s diagnosis that Meehan learned of the Alzheimer’s Association, where she found the information and support she desperately needed. Like most LGBTQ+ older adults, Meehan and Miles did not have children and their support network shrank over time. The couple saw longtime friends fade away from Miles’s life after the dementia diagnosis.

Meehan said that “their friends didn’t know what to do,” and let their fear get in the way of supporting the couple. Barbara says the key to keeping her sanity was finding a support group.

I was in an Alzheimer’s caregiver support group when Faye was still alive, and it was wonderful. We were a great group. I’m going to guess that I was two or three people’s first gay person they ever met. But it didn’t matter because we were all living the same life [as a caregiver].

Barbara Meehan

Caring for a loved one with dementia “brings you to a really hard, difficult point. That extra support is so important,” said Meehan.

On October 5, 2015, Meehan lost Miles to Alzheimer’s. Meehan, who had spent the last 8.5 years of Miles’s illness by her side, now found a large void in her life. Being a lifelong advocate, Meehan threw herself into educating others about the disease and connecting them to support. Currently, Meehan serves as an LGBTQ+ caregiver support group facilitator, sits on the Massachusetts Governor's Advisory Council on Alzheimer's Disease and All Other Dementia, volunteers at health fairs, and advises on the newly formed partnership between the HRC Foundation and the Alzheimer’s Association.

Everyone is at risk for Alzheimer's. “It doesn’t care if you are gay or straight. It takes whatever it wants. So I will do whatever I can to see an end to Alzheimer’s, ” said Meehan.

The HRC Foundation and the Alzheimer’s Association stand with Meehan in the fight to end Alzheimer's. Each organization is dedicated to ensuring the LGBTQ+ community knows they have a trusted source for Alzheimer’s and dementia-related information and support. With successful online events such as ALZPride: Voices of the LGBTQ+ Community in June and an LGBTQ+ caregiver panel in November, the organizations bring light to the unique challenges LGBTQ+ individuals face and push for LGBTQ+ inclusion in aging services and supports. Jointly developed resources will be published in the coming year. As Meehan states, “it's obvious through history that the LGBTQ+ community supports each other, and that's why I think it's important for people to know. This illness is out there.”

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About the Alzheimer’s Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org/lgbtq to access LGBTQ+ community resources or call the Association's free 24/7 Helpline (800.272.3900) for confidential support and information.