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

The post Empowering Our Group: Advocating for Black LGBTQ Elders Residing with Alzheimer’s and Different Dementias – San Francisco Bay Instances appeared first on DAILY SAN FRANCISCO BAY NEWS.

Scientists have questioned whether a “breakthrough” Alzheimer’s drug will ever make it to patients after more details of its side effects have been released.

Final clinical trial results for lecanemab show that the drug was able to slow the rate of decline in people’s memory and thinking as well as function over 18 months, and also helped people with day-to-day activities. Dementia experts hailed a potential “historic moment” when some of the final results were published in September, but questions remained about lecanemab’s side effects.

The full results, published at the Clinical Trials on Alzheimer’s Disease conference in San Francisco overnight, confirm a “robust effect” of slowing of cognitive decline of 27 per cent compared to those people in the study who were not given the drug. The trial, known as Clarity AD included 1,795 people with early-stage Alzheimer’s and mild cognitive impairment (MCI) due to Alzheimer’s, who received a bi-weekly infusion of either lecanemab or a placebo.

The paper, published in the New England Journal of Medicine, gave more details of a prominent side effect of lecanemab known as amyloid-related imaging abnormality (Aria), which involves a bleed or build up of fluid in the brain. It can vary from mild and negligible to quite severe.

Some 12.6 per cent (or 1 in 8) of those who received lecanemab developed Aria, while 1.7 per cent (less than 1 in 50) developed it in the placebo group. Although there were a similar number of deaths in both groups – eight in the lecanemab group and seven in the placebo group – scientists said further follow up is needed to understand whether Aria in certain patients is life threatening.

If so, it may be that patients receiving such treatments need to be excluded. Further studies will be able to identify the patients at risk and those patients who will maximally profit from the treatment.

The paper also suggests further studies to evaluate how effective and safe lecanemab is ongoing, as a key question is whether clinical benefits are progressive in that they continue beyond the 18 months, and whether they are sustained.

Rob Howard, professor of old age psychiatry at UCL, asked whether the drug was safe. He said: “Recent reports of two deaths from strokes, attributed to a side-effect of the drug, are concerning. The data published on Wednesday indicates that six lecanemab-treated patients suffered strokes during the trial compared with two in the placebo group. Treatment therefore does carry risks, and in some rare cases this can be severe or life-threatening.

“I suspect that the lack of demonstrable clinical effectiveness will mean that lecanemab will not be taken up widely within healthcare systems around the world, although there will always be those whose heart rules their head. We need to keep looking for better and safer dementia treatments and today’s results show that we are now on a believeable path to doing so.”

Lecanemab, produced by Tokyo-based pharmaceutical company Eisai and US biotech firm Biogen, is the first drug that provides a real treatment option for people with Alzheimer’s, experts said. While the clinical benefits appear somewhat limited, it can be expected that they will become more apparent if the drug is administered over a longer time period.

Prof Tara Spiers-Jones, deputy director at the University of Edinburgh’s Center for Discovery Brain Sciences, said: “While [the results are] good news from a well-conducted trial, it is important to note that this is not a cure. Both groups in the trial had worsening symptoms, but people taking the drug did not decline as much in their cognitive skills.

“As the authors point out, there is not an accepted definition of clinically meaningful effects in the cognitive test they used, and it is not clear yet whether the modest reduction in decline will make a big difference to people living with dementia. Longer trials will be needed to be sure that the benefits of this treatment outweigh the risks.

“As a scientist working on Alzheimer’s disease for many years, it is wonderful news that years of fundamental neuroscience research have resulted in a treatment can slow the progression of Alzheimer’s disease and reverse some of the pathological changes in the brain. This result will boost research and gives hope that the treatments based on ongoing neuroscience research will be even better. ”

Professor Bart De Strooper, director of the UK Dementia Research Institute, said: “The overall conclusion is extremely positive. This trial proves that Alzheimer’s disease can be treated. I hope we will start to see a reversal in the chronic underfunding of dementia research. I look forward to a future where we treat this and other neurodegenerative diseases with a battery of medications adapted to the individual needs of our patients.”

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