Simone E. Morris and her daughter Millie Walton discuss their children’s book about dementia. Morris also discusses dementia care and access in marginalized communities.

Interactive guide: Explore two families’ generational Alzheimer’s stories

Dementia can have an impact on generations of families. In our interactive feature “Alzheimer’s, Generations of Impact,” explore 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 through these love, resilience, family bonds, and the urgency for awareness.

Choose your own path through an interactive feature on familial Alzheimer’s with Michele Castro and Kim Reid:

“The power of music is something that is essential in my life, and I hope in many other people’s lives.” -Myra Garcia, former opera singer and Alzheimer’s advocate

Myra Garcia

Former opera singer and university fundraiser Myra Garcia was initially misdiagnosed with ADD. After receiving her Alzheimer’s diagnosis she became an Alzheimer’s advocate focused on improving care in the Latino community.

Watch her story.

Myra Garcia

Former opera singer and university fundraiser Myra Garcia was initially misdiagnosed with ADD. After receiving her Alzheimer’s diagnosis she became an Alzheimer’s advocate focused on improving care in the Latino community.

Watch her story.

 

“When we look at health deserts and hospital deserts, they are predominantly in Black communities. So you have the food that you eat, the air that you breathe, the water that you drink, and the inability to access appropriate healthcare. These four factors increase one’s risk to developing Alzheimer’s disease.” -Dr. Macie Smith, dementia educator and author

Dr. Macie Smith

Award-winning dementia educator and best-selling author Macie P. Smith, PhD has coordinated care for aging and vulnerable populations for decades. Here’s how she says we can better support caregivers in the Black community.

Watch her story.

“There’s a stigma with talking about it, naming it, and being private about what’s happening to your loved one. I went through myriad emotions in deciding to be very vulnerable, transparent, and raw about my mom’s story.” -Simone E. Morris, Alzheimer’s advocate

Simone E. Morris

Simone Morris is a coach, trainer, speaker, and author passionate about inclusion. Morris’s late mother lived with dementia, which inspired Morris and her daughter to write a children’s book about dementia.

Read her story.

Simone E. Morris

Simone Morris is a coach, trainer, speaker, and author passionate about inclusion. Morris’s late mother lived with dementia, which inspired Morris and her daughter to write a children’s book about dementia.

Read her story.

 

“What we try to explain to these individuals is that by participating in this program or similar programs, you are actually helping your family because you’re helping yourself better understand how to care for them. In the long run, that will only help your whole family unit, not just the care recipient.” -Dr. Van Ta Park, UCSF professor

Dr. Van Ta Park

Dr. Van Ta Park is a professor at UCSF School of Nursing. Her research focuses on addressing issues related to racial and ethnic minority health and healthcare disparities.

Read her story.

Share your story.

Are you a patient, caregiver, doctor, or dementia researcher advocating for helping expand access to better education or care in a community of color?

Or, is there someone in your community who does that you think we should spotlight?

Tell us your story or nominate someone in your community here.

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Meet the change-makers

Diversifying research

Rianna Patterson x Indira Turney dementia racism

Dementia Researcher’s

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

diversity Alzheimer's

language barrier dementia care

Kaimi-Sinclair

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

Bringing Brain Health Equity

david-xavier-marquez-rush-alzheimers-researcher

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

“All of these years we’ve put the onus of not participating on Latinos and their families, Blacks and their families, and on other underrepresented groups, and we’re missing the boat there. We’ve already spent maybe billions of dollars in the last four decades [to diversify dementia-related clinical research], and yet less than 5 percent of these trials include underrepresented groups like Latinos and African Americans.” -Professor María Aranda, USC Alzheimer’s Disease Research Center

Addressing racial bias through advocacy

terrie montgomery voices of alzheimers

gevonna-fassett-olivias-prayer

Mollie Richards and Ralph Richards

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

Gertrude Jordan and Ty Lewis

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

Rianna Patterson x Indira Turney dementia racism

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

Myra Garcia: Singing for Alzheimer’s Advocacy in the Latino Community

When former singer and university fundraiser Myra Garcia began experiencing early signs of Alzheimer’s, she was initially misdiagnosed with ADD. Now, as an Alzheimer’s advocate, she’s lending her voice to improve education and care in the Latino community.

By Katy Koop | October 15, 2024

Defeating stigma with education

dementia zambia

Fighting Dementia

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

Gloria Aguirre Live Talk

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

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

Macie P. Smith: How to Support Caregivers in Black Communities

Award-winning dementia educator and best-selling author Macie P. Smith, PhD has coordinated care for aging and vulnerable populations for decades. Here’s how she says we can better support caregivers in the Black community.

By Katy Koop | November 6th, 2024

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