Empowering Our Community: Advocating for Black LGBTQ Elders Living with Alzheimer’s and Other Dementias

By Brendalynn R. Goodall, M.S.W.–

My entire life has been centered around giving back and building community engagement. I identify as an out and proud 72-year-old Black lesbian who is passionate about public service and a sincere desire to serve. I have been the voice and advocate for elder justice, mental health issues, LGBTQ+ rights and BIPOC issues. All those issues have touched me personally.

I would like to share with you a topic that is often overlooked in our society: Alzheimer’s disease and the LGBTQ + community and, in particular, the Black LGBTQ+ community. As we all know, Alzheimer’s disease is a devastating disease that can rob people of their memories, their sense of self, and ultimately their lives. But what many people may not realize is that this disease disproportionately affects certain communities, including Black LGBTQ+ elders. Black LGBTQ+ seniors have unique challenges when it comes to Alzheimer’s disease. Not only are they more likely to experience discrimination and marginalization due to their sexual orientation and or gender identity, but they are also more likely to experience social isolation, lack of support systems, and inadequate health care.

Let me share with you one of my experiences with caregiving for a friend living with Alzheimer’s. I was part of a support group called “Myra’s Circle.” Myra struggled with dementia and was unable to manage her life for nine years. In her last few months, she was attended by hospice because of advanced cancer. Myra’s Circle was a racially diverse group of lesbians who helped manage her life from July 2012 to the end. Myra passed away January 1, 2021. The experiences of her young life made Myra feel that no one was going to take care of her, and that she always had to be self-reliant and wary of the motives of others. I was not a long-term friend of Myra; however, she reached out to me and my spouse Nancy to be included in her family of choice. She asked us to be her support and caregiver at the beginning stage of her dementia. We were a group of older lesbians that met initially biweekly and then monthly. Over time, our circle of caregivers grew closer, and we became good friends.  

I remember Myra as an independent, strong, and smart woman. She had been a college English teacher, City of Oakland plumber, and the proprietor of Wonder Woman Plumbing. We managed her money, healthcare, transportation, and housing needs. We moved her several times and connected her to social service resources and made daily and weekly check-in phone calls and frequent visits, especially to organize her living space. Many times, we “found” her lost phone and investigated “strange noises” in her apartment while she struggled with her dementia. While Myra’s disease progressed, it was heart-wrenching and emotionally draining. Yet, our Circle did not waver in our love and support of Myra. Chosen family care circles are common in both the LGBTQ+ and Black LGBTQ+ communities. It turns out that our experience was not isolated.

There is a growing body of research indicating that LGBTQ+ BIPOC older adults are at higher risk for Alzheimer’s disease and other forms of dementia. Experiences of structural, interpersonal, and institutional racism are associated with poor memory and increased cognitive decline in midlife and old age, especially among Black individuals. In addition, elders in communities of color are often underserved when it comes to diagnosis, treatment, and support. Several factors contribute to this increased risk, including discrimination, social and economic disparities, and lack of access to culturally competent healthcare resources.

Furthermore, BlPOC LGBTQ+ elders may be less likely to seek medical care or participate in research studies due to historical and systemic racism. This results in a lack of understanding of the unique needs and experiences of BIPOC LGBTQ+ elders and hinders the development of effective prevention and treatment strategies.

It is essential that healthcare providers and policymakers address these disparities and develop culturally sensitive approaches to care for BIPOC LGBTQ+ elders with Alzheimer’s disease and other forms of dementia. This includes providing access to appropriate medical care, mental health support, and social services that are specifically tailored to the needs of this population.

For the past two years, I have been working with the Alzheimer’s Association to bring greater awareness about Alzheimer’s to the LGBTQ+ Community in the East Bay. As a longtime LGBTQ+ aging advocate, I knew that it was critical to use my passion and voice to make it happen, to help create those relationships in the East Bay.  

To do the work, I served with the Alzheimer’s Association to develop a partnership with East Bay nonprofit organizations—Lavender Seniors, Pacific Center, and the Oakland LGBTQ Center. We call ourselves the East Bay LGBTQ+ Community Outreach Group.

We have held three Alzheimer’s Awareness Forums. Our first was for LGBTQ+ caregivers, a listening session to hear about their experience with dementia and Alzheimer’s, and especially how it was impacting our community, particularly our BIPOC LGBTQ+ elders. The second was an educational session for staff of nonprofits serving the LGBTQ+ community. The third, a conference entitled “Aging with Pride: Building a Caring Community Together,” was with Openhouse, a San Francisco LGBTQ+ senior serving nonprofit. It helped to educate our LGBTQ+ community members about dementia.

I am happy to be part of this collaborative effort because the Alzheimer’s Association is reaching out to build a relationship with the East Bay LGBTQ+ community and they are committed to providing culturally competent services and resources to our underserved communities.

I also would like to share a few statistics about the LGBTQ+ community and dementia:

• LGBTQ+ older adults experience more health disparities than their heterosexual peers—including increased rates of depression and higher rates of tobacco and alcohol use. This is in addition to higher rates of obesity and cardiovascular disease, all of which are risk factors for Alzheimer’s.
• 7.4% of the lesbian, gay, and bisexual older adult population is living with dementia.
• Black Americans are approximately two times more likely than white Americans to have Alzheimer’s and other dementias.
• Although the rate of Alzheimer’s and other dementias in Blacks and Hispanics is higher than whites, they are less likely than whites to have a diagnosis of the condition.
• LGBTQ+ adults are twice as likely to develop dementia than straight people.
• LGBTQ+ older adults are often reluctant to reach out for needed services and support because they fear poor treatment due to their LGBTQ identity. 
• When LGBTQ+ elders develop dementia, there is less social support as we are more likely to live alone and not have adult children to provide care. 
• 1 in 5 LGBTQ adults provide care for someone else—20% higher than the general population.
•  Often our caregivers are “our chosen family.”

Living with Alzheimer’s or another dementia is not easy for anyone. However, LGBTQ+ individuals can often face additional challenges that need to be considered and addressed to ensure that our communities receive respectful and competent care. As a community, we need to ensure that all individuals, regardless of their race, ethnicity, sexual orientation, or gender identity, have access to the resources and support they need to age with dignity and respect.

The Alzheimer’s Association has a commitment to serve all communities. Inclusion is a core value of the Alzheimer’s Association.   As we are continually reminded, systemic racial and social injustices permeate all aspects of society and are intertwined with the causes of health disparities for many of our communities. Let us work together to create a society in which all people feel safe, cared for, and valued. 

Brendalynn R. Goodall, M.S.W., is an accomplished administrator and social worker with more than 32 years in the fields of aging, mental health, and workforce development. As a native of Oakland, Goodall has activist and social justice roots that are anchored in the East Bay.

Special Section Aging in Community by Dr. Marcy Adelman
Published on May 4, 2023