Dr. Fayron Epps
Emory University School of Nursing professor Dr. Fayron Epps knows that to address the dire need for better representation of racial minorities in Alzheimer’s and dementia clinical trials, change — in awareness and in trust — must come from within.
Read her story here.
Dr. Fayron Epps
Emory University School of Nursing professor Dr. Fayron Epps knows that to address the dire need for better representation of racial minorities in Alzheimer’s and dementia clinical trials, change — in awareness and in trust — must come from within.
Read her story here.
LuPita Gutierrez-Parker
Alzheimer’s advocate LuPita Gutierrez-Parker was first diagnosed with MCI at 61, which developed into early-onset dementia just a year later. Since her diagnosis she has worked to break down stigma in the Latino community.
Read her story here.
Terrie Montgomery
Terrie Montgomery was diagnosed with early-onset Alzheimer’s in 2015. Since then she has become an advocate for equal access to Alzheimer’s diagnostic care and treatment for Americans who rely on Medicare.
Read her story here.
Terrie Montgomery
Terrie Montgomery was diagnosed with early-onset Alzheimer’s in 2015. Since then she has become an advocate for equal access to Alzheimer’s diagnostic care and treatment for Americans who rely on Medicare.
Read her story here.
Two families’ stories
Dementia can have an impact on generations of families. Our latest interactive feature, “Alzheimer’s, Generations of Impact,” explores the lives of two women affected by familial Alzheimer’s — one living with the diagnosis, and the other living with a high-risk gene.
Discover how this condition echoes through generations, particularly in communities of color.
Michele Castro’s mother and brother both passed away from early onset Alzheimer’s before age 60. In her 40s, Castro took a genetic test and learned that she, too, has the PSEN1 gene — a gene that spikes her risk of developing the disease herself. Now, she’s fighting for a brighter future for her and her children and grandchildren.
Kim Reid’s mother had Parkinson’s disease and Lewy Body Dementia and Kim herself is now living bravely with early-onset Alzheimer’s. Her husband, Robert, is her full-time caregiver. Their story is one of love, resilience, and the need for awareness in healthcare.
In “Alzheimer’s, Generations of Impact,” choose your own path through an interactive feature on familial Alzheimer’s with Michele Castro and Kim Reid. Explore the guide below:
–Alzheimer's risk gene carrier Michele Castro
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Alzheimer’s disease? Is there someone in your
community who does that you think we should
spotlight? Tell us your story or nominate
someone in your community using the form on
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Featured stories
Diversifying research
Dr. Indira Turney: How Racial Biases Hurt Public Health
Neuroscientist and researcher Dr. Indira Turney discusses the urgent need for inclusive research, systemic change, and dismantling harmful biases for true brain health equity.
By Katy Koop | February 7th, 2024
This Dementia Researcher’s Side Job: Supporting Black Women in Science
Studying Alzheimer’s at Cambridge, Oluwatomi Akingbade learned she had a passion for equality and representation in her field, leading her to found global networking platform Black Women in Science (BWiS).
By Rianna Patterson | February 28th, 2023
In This Region With U.S.’s Highest Alzheimer’s Rates, a New Research Center Takes a Fresh Approach
At a first-of-its-kind Alzheimer’s research center in Texas’s Rio Grande Valley, director Gladys Maestre is taking on a mammoth task: Boosting awareness and diversifying research around a disease that is more prevalent here than anywhere else in the U.S.
By Susana Granieri | May 3rd, 2023
This Emory Alzheimer’s Researcher Is Working To Boost Diversity in Research
The importance of good clinical research and good clinical care is greater than one might think. Emory University Alzheimer’s researcher Dr. Monica Parker shares her story.
By Alejandra O’Connell-Domenech | June 30th, 2022
Kao Lee Yang: How Language Barriers Impact Dementia Care
Nearly one in 10 Americans is at risk of an adverse health event due to language barriers. Scientist and advocate Kao Lee Yang works to break down the language barriers that impede health care access and to increase diversity and representation in Alzheimer’s research.
By Simon Spichak, MSc | July 15th, 2022
Ka`imi A. Sinclair on the Imperative of Alzheimer’s Awareness in American Indian Communities
Ka`imi A. Sinclair has devoted her career to brain health equity in indigenous communities and to getting these communities more involved in Alzheimer’s and dementia research.
By Simon Spichak, MSc | April 15th, 2022
Panel: Bringing Brain Health Equity to Communities of Color
Dr. Charles Windon, Dr. Joyce (Joy) Balls-Berry, and Dr. Jordan P. Lewis will join Being Patient Live Talks in a panel discussion on the stereotypes, cultural norms, and barriers to dementia diagnosis and care that experts are addressing to provide brain health equity in communities of color.
By Katy Koop | August 29, 2023
Trial Design Is Excluding Latinos From Alzheimer’s Research—USC’s María Aranda Has a New Plan
More Latinos than white Americans die of Alzheimer’s. But the clinical trials testing the drugs that could help them have mostly white participants. Alzheimer’s expert María Aranda has a new set of trial enrollment guidelines to bridge that gap.
By Simon Spichak | July 31, 2023
Despite Higher Risk, Latinos Are Left Out of Alzheimer’s Studies. Here’s Why
Alzheimer’s researcher David Xavier Marquez dives into some of the damaging assumptions made by scientists outside the Latino community about why this group has higher dementia risk — and shares better ways to get this population involved in clinical research.
By Simon Spichak | June 15th, 2023
–Professor María Aranda, USC Alzheimer's Disease Research Center
Addressing racial bias through advocacy
Diagnosed and Determined: The Tenacity of Terrie Montgomery
Since Terrie Montgomery was diagnosed with early-onset Alzheimer’s in 2015, she’s been an advocate for her own health — and the health of others. Today, she’s rallying for equal access to Alzheimer’s diagnostic care and treatment for the tens of millions of Americans who rely on Medicare.
By Lonna Whiting | November 15th, 2022
Being There for Black Alzheimer’s Caregivers: GeVonna Fassett’s Story
Alzheimer’s advocate GeVonna Fassett spent more than a decade caring for her late mother. Today, her organization, Olivia’s Prayer, supports dementia caregivers and raises awareness in Chicago’s Black community.
By Elena Ferrarin | August 1st, 2022
25 Years of Alzheimer’s Awareness: Building Bridges of Trust
When husband-and-wife team Mollie and Ralph Richards got involved in Alzheimer’s advocacy, one of the biggest obstacles they encountered between Black communities and adequate healthcare access was a lack of trust. They’ve devoted nearly a quarter century to changing that.
By Simon Spichak, MSc | August 15th, 2022
Leading With Love: Ty Lewis Amplifies the Voice of Black Caregivers
Ty Lewis, professional educator, certified dementia consultant, wife, mother, and care partner to her own mother, explains how normalizing dementia has the potential to create better outcomes for the Black community.
By Lonna Whiting | September 15th, 2022
Dave Balbridge: An Advocacy Mission for Aging American Indians
Dave Balbridge has worked with elders from the Cherokee and other tribal nations for more than 30 years, advocating for resources and funding to provide support for Alzheimer’s and other forms of dementia.
By Simon Spichak, MSc | May 16th, 2022
As a Teen, She Launched a Now World-Renowned Dementia Advocacy Effort
Dominica Dementia Foundation founder and documentary filmmaker Rianna Patterson began her advocacy journey when she was just 18. She believes young people have the power to eliminate the stigma around dementia.
By Katy Koop | May 24th, 2023
LuPita Gutierrez-Parker: On Life and Advocacy with Early-Onset Alzheimer’s
Alzheimer’s advocate LuPita Gutierrez-Parker on her journey with early-onset Alzheimer’s and her work to break down stigma in the Latino community.
By Katy Koop | October 3rd, 2023
Tony Gonzales’s Fight for Better Alzheimer’s Care in the U.S. Hispanic Community
“Everybody deserves to have the correct information. We are going to fight so that everybody has an equal chance.” –Alzheimer’s advocate Tony Gonzales
By Simon Spichak | March 31st, 2023
Racism and Dementia: A Q&A With Caribbean Neuroscientist Indira Turney
Dementia advocate Rianna Patterson interviews Columbia University dementia researcher Dr. Indira Turney about the disproportionate brain health risks for Black and brown Americans — and what lifestyle has to do with it.
By Rianna Patterson | August 16th, 2023
Addressing Bias: How Meri Yaadain Is Supporting South Asian Carers
In the UK, over 25,000 people from ethnic minority groups are living with dementia. Through his organization Meri Yaadain, dementia researcher Mohammed Akhlak Rauf has set out to research – and remedy – why the country’s healthcare system is failing them and their carers.
By Samia Qaiyum | March 15th, 2023
Defeating stigma with education
They Thought It Was Witchcraft—It Was Dementia: A Zambian NGO Raises Awareness
People living with dementia in Zambia are often accused of witchcraft. A national organization called the Alzheimer’s Diseases and Related Dementias in Zambia is fighting to change this reality. A local journalist tells the story.
By Fiske Nyirongo | June 1st, 2022
The Brainchild of a College Class: A Latino Telenovela About Alzheimer’s
Latinos have a high risk of Alzheimer’s — and very little presence in Alzheimer’s clinical trials. A group of film students at the University of Houston is channeling their creativity into an effort to reduce stigma and boost awareness.
By Alejandra O’Connell-Domenech | April 17th, 2023
Panel: Fighting Dementia in Black Communities Through Education
Alzheimer’s advocates Mollie Richards and Ralph Richards join Being Patient Live Talks in a panel discussion on how patients, families, and community leaders in communities of color are taking a grassroots approach to change the conversation about Alzheimer’s and dementia.
By Katy Koop | September 7th, 2023
Creativity & innovation for diversity
With Tech, a Nigerian Artist Brings ‘Spark’ to Care Homes
In Nigeria, artist Kunle Adewale is bringing art to older adults through a range of different technologies, including virtual reality — and challenging perceptions of dementia and cognitive impairment in the process.
By Elizabeth Hewitt | December 1st, 2022
Gloria Aguirre: Boosting Brain Health With Creativity in San Francisco
Atlantic Fellow for Health Equity Gloria Aguirre discusses her work boosting brain health in San Francisco through education, social connection, and creativity.
By Katy Koop | October 30th, 2023
Caregivers’ perspectives
Shonda Bell: Why Caregiving is a ‘Challenge’ and an ‘Honor’
Shonda Bell became an advocate for people with dementia after both of her parents were diagnosed with Alzheimer’s two years apart, requiring her to navigate complex medical issues and even financial fraud.
By Simon Spichak, MSc | June 15th, 2022
Building Hope: The Enduring Optimism of Loretta Veney
Despite a doctor’s racist stereotypes, myriad financial crises and 16 years helping her mother live well with dementia, caregiver Loretta Veney shows up with a positive and proactive mindset. And it’s made all the difference.
By Lonna Whiting | November 1st, 2022
Christiana Egi: Breaking Down Dementia’s Stigmas for the Young and Old
Christiana Egi is the owner of the Alexis Lodge — a home to more than 20 people living with dementia. But why stop there? Authoring children’s books and hosting a podcast, she is constantly growing her impact when it comes to dementia awareness and support for her community, children and adults alike.
By Simon Spichak | February 15th, 2023