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Empowering Our Group: Advocating for Black LGBTQ Elders Residing with Alzheimer’s and Different Dementias – San Francisco Bay Instances

Brendalyn Goodall

Brendalynn R. Goodall, MSW –

My whole life has been about giving back and building community involvement. I identify as an outgoing and proud 72 year old black lesbian who is passionate about public service and has a genuine desire to serve. I have been the voice and advocate for elder justice, mental health issues, LGBTQ+ rights and BIPOC issues. All of these topics touched me personally.

I want to share with you an issue that is often overlooked in our society: Alzheimer’s disease and the LGBTQ+ community and especially the Black LGBTQ+ community. As we all know, Alzheimer’s disease is a devastating disease that can rob people of their memories, their self-esteem, and ultimately their lives. However, what many people may not realize is that this disease disproportionately affects certain communities, including black LGBTQ+ older people. Black LGBTQ+ seniors face unique challenges when it comes to Alzheimer’s disease. Not only are they more likely to experience discrimination and exclusion based on their sexual orientation and/or gender identity, they are also more likely to experience social isolation, a lack of support systems and inadequate health care.

Let me share with you one of my experiences caring for a friend with Alzheimer’s. I was part of a support group called Myra’s Circle. Myra struggled with dementia and was unable to get on with her life for nine years. In recent months she has been cared for by the hospice because of advanced cancer. Myra’s Circle was a racially mixed group of lesbians who helped navigate her life from July 2012 to the end. Myra died on January 1, 2021. The experiences of her young life left Myra feeling that no one cared about her and that she always needed to be self-reliant and wary of the motives of others. I wasn’t a longtime friend of Myra’s; However, she approached me and my wife Nancy to be included in the family of her choice. She asked us to be her support and caregiver in the early stages of her dementia. We were a group of older lesbians who met bi-weekly at first and then monthly. Over time, our circle of caregivers grew closer and we became good friends.

Brendalynn Goodall with President Barack
Obama in the White House

I remember Myra as an independent, strong and smart woman. She was a college English teacher, a plumber in the city of Oakland, and the owner of Wonder Woman Plumbing. We managed their money, health, transportation and housing needs. We have moved her several times and connected her to social services resources and have had daily and weekly check-in phone calls and frequent visits especially to organize her housing. Many times we “found” her lost phone and investigated “strange noises” in her apartment while she was battling her dementia. As Myra’s illness progressed, she was heartbreaking and emotionally draining. Yet our circle did not waver in our love and support for Myra. Select family foster 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 suggesting that older LGBTQ+ BIPOC adults are at higher risk for Alzheimer’s 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, particularly among blacks. Additionally, 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 inequalities, and lack of access to culturally competent health resources.

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

East Bay Stonewall Democratic Club leaders, including Brendalynn Goodall (center), carried the organization’s banner at the Oakland Pride Parade.

It is critical that healthcare providers and policy makers address these differences and develop culture-sensitive approaches to caring for BIPOC LGBTQ+ elders with Alzheimer’s and other forms of dementia. This includes access to adequate medical care, psychological support and social services specifically tailored to the needs of this population group.

For the past two years, I’ve worked with the Alzheimer’s Association to raise awareness of Alzheimer’s among the LGBTQ+ community in the East Bay. As a longtime advocate for the LGBTQ+ age, I knew it was critical to use my passion and voice to make that happen and help build those relationships in the East Bay.

To get the job done, I worked with the Alzheimer’s Association to partner with East Bay nonprofits – Lavender Seniors, Pacific Center, and the Oakland LGBTQ Center. We call ourselves the East Bay LGBTQ+ Community Outreach Group.

We held three Alzheimer’s awareness forums. Our first was for LGBTQ+ caregivers, a listening session to learn more about their experiences with dementia and Alzheimer’s and specifically how this is affecting our community, particularly our BIPOC LGBTQ+ elders. The second was a training session for employees of non-profit organizations that serve the LGBTQ+ community. The third, a conference entitled “Aging with Pride: Building a Caring Community Together,” was held with Openhouse, a San Francisco-based nonprofit for LGBTQ+ seniors. It has helped educate our members of the LGBTQ+ community about dementia.

I am excited to be a part of this collaboration as the Alzheimer’s Association seeks to build a relationship with the East Bay LGBTQ+ community and commit to providing culturally competent services and resources to our underserved communities.

I also want to share some stats about the LGBTQ+ community and dementia:

  • Older LGBTQ+ adults experience more health disparities than their heterosexual peers — including more frequent depression and higher tobacco and alcohol use. Add to this higher rates of obesity and cardiovascular disease, all of which are risk factors for Alzheimer’s.
  • 7.4% of the older adult lesbian, gay and bisexual population is living with dementia.
  • Black Americans are about twice as likely than white Americans to have Alzheimer’s and other dementias.
  • Although Alzheimer’s and other dementia rates are higher in blacks and Hispanics than in whites, they are less likely than whites to be diagnosed with the disease.
  • LGBTQ+ adults are twice as likely to develop dementia as straight people.
  • Older LGBTQ+ adults are often reluctant to seek the services and support they need because they fear poor treatment because of their LGBTQ identity.
  • When LGBTQ+ older people develop dementia there is less social support as we tend to live alone and have no adult children to care for them.
  • 1 in 5 LGBTQ adults cares for someone else – 20% more than the general population.
  • Our caregivers are often “our family of choice”.

Living with Alzheimer’s or any other form of dementia is not easy for anyone. However, LGBTQ+ individuals often face additional challenges that need to be considered and addressed to ensure our communities receive respectful and competent care. As a community, we must ensure that all people, regardless of 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 is committed to serving all communities. Inclusion is a core value of the Alzheimer’s Association. As we are constantly reminded, systemic racial and social injustices permeate all aspects of society and are intertwined with the causes of health inequalities in many of our communities. Let’s work together to create a society where everyone feels safe, cared for and valued.

Brendalynn R. Goodall, MSW, is an accomplished administrator and social worker with more than 32 years of experience in the fields of aging, mental health and human development. An Oakland native, Goodall has activist and social justice roots anchored in the East Bay.

Special section Aging in Community
Released May 4, 2023

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