By Jason D. Flatt, Ph.D., M.P.H.–
It’s almost Pride month and we cannot celebrate our diverse communities without acknowledging the LGBTQIA+ pioneers—Marsha P. Johnston, Silvia Rivera, Felicia “Flames” Elizondo, Donna Personna, Del Martin and Phyllis Lyon, Cleve Jones, and Harvey Milk—who fought for our LGBTQIA+ equality and rights. We have made progress despite the social and political attacks on our rights, and yet, we have to continue to fight to reshape systems and ensure our pioneers have access to the cornerstones of successful aging. These cornerstones include legal protections and economic security, social connections and support, and access to welcoming and quality healthcare.
We estimate that there are over a million LGBTQIA+ adults in the U.S. who are aged 65 and older—nearly 17,000 LGBTQIA+ adults aged 65+ live in San Francisco. Age is one of the leading risk factors for Alzheimer’s and Parkinson’s disease. We know that many LGBTQIA+ adults aged 65+ are more likely to experience health challenges that increase their risk for these neurological diseases. These health challenges include hypertension, sleep problems, diabetes, stroke, head trauma, depression, and PTSD. Many of these health challenges are likely due to, or intensified by, the historical and current discrimination experienced by LGBTQIA+ people in our society and because we lack human rights protections, such as equal access to housing, employment, and welcoming healthcare.
Recent policy and advocacy efforts by the Alzheimer’s Association, the Michael J. Fox Foundation for Parkinson’s Research, and additional groups have led to efforts to increase funding for research and care resources. For instance, signed in 2011, the National Plan to Address Alzheimer’s Disease Act (Public Law 111-375) aims to prevent and effectively treat Alzheimer’s disease by 2025. The plan provides funding to enhance quality and efficiency of healthcare, expand support for those living with Alzheimer’s disease and their families, increase public awareness, improve data tracking, and promote healthy aging and reduce risk factors. To date, the National Institutes of Health has provided over $3 billion for Alzheimer’s disease research. There is also a proposed bill currently being discussed by congress (H.R.2365 / S.1064) for the National Plan to End Parkinson’s.
We still have limited knowledge of how our community is impacted by Alzheimer’s and Parkinson’s disease. Ours and other’s research has found that between 7 to 20% of LGBTQIA+ adults aged 65 and older have a diagnosis of Alzheimer’s disease or a related dementia. Ames Simmons’ article in the prior issue of the San Francisco Bay Times, “Transgender People and Dementia Care,” highlights how concerns around memory and Alzheimer’s disease are elevated for the transgender community. We do find major concerns for the transgender community. For instance, a recent study looking at fee-for-service data from 2008–2017 for Medicare beneficiaries aged 65+ found that rates of Alzheimer’s disease and dementia were nearly double for transgender men and women (21%) compared to around 12% for cisgender (not transgender) men and women.
We also know that LGBTQIA+ community members are more likely to report subjective cognitive decline or concerns with worsening or impaired memory and thinking than their non-LGBTQIA+ peers. Also, these memory concerns were higher for transgender adults and those with additional marginalized identities (i.e., bisexual adults and LGBTQIA+ communities of color). We additionally found that over 50% LGBTQIA+ adults with these memory concerns do not talk to their healthcare providers about them. Another recent study with LGBTQIA+ persons living with Parkinson’s disease found that LGBTQIA+ people and women were more likely to report discrimination in healthcare. We also know the needs of LGBTQIA+ caregivers/care partners of persons with memory loss, and Alzheimer’s and Parkinson’s disease, are often overlooked.
While there have been national efforts to address Alzheimer’s and Parkinson’s disease research, care, and supports, the LGBTQIA+ community has not been included in the research, treatment approaches, and related care efforts. Researchers have been working to ensure LGBTQIA+ people are represented in national research. For instance, our team was able to get questions added to the National Alzheimer’s Coordinating Center, which works with 42 Alzheimer’s Disease Research Centers across the U.S. As part of the coordinating center’s efforts to improve data collection, we have been able to include questions about sex assigned at birth, gender identity, sexual orientation, and intersex traits.
Our Rainbows of Aging teams at the University of Nevada, Las Vegas, and University of California San Francisco are also working to ensure our community is represented in research. For instance, we are partnering on the first federally-funded research registry (Research Inclusion Supports Equity or RISE) for LGBTQIA+ community members experiencing memory loss or those caring for someone with memory loss. The registry aims to learn about the types of research community members want and identify ways to ensure the LGBTQIA+ community is included other Alzheimer’s disease research. The Rise Registry brings together LGBTQIA+ community leaders, researchers and nonprofit organizations, such as The Alzheimer’s Association, CenterLink, and LGBTQIA+ senior service organizations, to guide the research and identify welcoming care and support services across the U.S. You can learn more and sign up for The Rise Registry by visiting https://www.theriseregistry.org
We have another new study funded by the Alzheimer’s Association. The Stonewall Generations Study is a research study for both LGBTQIA+ and non-LGBTQIA+ adults that are 50 years or older. We want to learn more about our communities’ concerns with memory, thinking, and health. We are inviting community members to complete a 45-minute telephone interview and receive a $25 Visa gift card. If you are interested in participating, leave us a message at 1-833-966-6974
We also have a new three-year study funded by the Michael J. Fox Foundation for Parkinson’s Disease Research. PRIDE (Parkinson’s Research with Inclusion, Diversity, and Equity) is learning about the health and healthcare needs of our communities living with Parkinson’s disease and their caregivers/care partners. If you are interested participating, leave us a message (at 1-888-709-7689). Those who complete the interview will receive a $25 Visa gift card.
Finally, we want to encourage you to consider some of the amazing efforts in San Francisco. For instance, there are programs such as the San Francisco LGBTQ+ Dementia Care Project, a partnership between the Alzheimer’s Association, Openhouse, and Family Caregiver Alliance, and funded by the San Francisco Department of Disability & Aging Services. LGBTQ+ Dementia Care Project is a free training to health and social service providers on the care needs of LGBTQ+ seniors living with Alzheimer’s disease or other dementias and their care partners in San Francisco City and County. You can request the training at https://tinyurl.com/27przz86
Finally, Openhouse and OnLok have created a new program, Community Day Services, which is called Club 75 by participants. OnLok also has an article in this issue about Club 75, a new adult day program for LGBTQIA+ community members and their families that provides a safe and affirming space for LGBTQIA+ seniors who might need additional support with Alzheimer’s or aging-related care and want to engage with their community and benefit from meals, services to support wellness, and personal care, transportation, and social activities. The program cost is based on sliding scale to make it affordable to all. To learn more, call 415-535-0927 or email Ephraim Getahun at egetahun@openhousesf.org
Jason D. Flatt, Ph.D., M.P.H. (Pronouns: He/They) is an Assistant Professor at the University of Nevada, Las Vegas, School of Public Health, Department of Social and Behavioral Health and Adjunct Associate Professor with the University of California, San Francisco, School of Nursing, Institute for Health and Aging. Dr. Flatt’s current research works to better understand concerns and needs of diverse lesbian, gay, bisexual, transgender, queer, intersex, asexual, and additional identities adults living with Alzheimer’s disease, Parkinson’s disease, and their care providers. In 2020, he received the Early-Stage Investigator Award from the NIH Sexual and Gender Minority Research Office. His research is funded by the National Institute on Aging, American Federation for Aging Research, The Alzheimer’s Association, and The Michael J. Fox Foundation for Parkinson’s Research. He and his husband live in Las Vegas with their three pups: Tuna, Bowie, and Elton. You can learn more about his research and team members at www.RainbowsofAging.org
Aging in Community Special Section Part Two by Dr. Marcy Adelman
Published on May 18, 2023
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