The Changing Face of Alzheimer's

UsAgainstAlzheimer’s is a national leader in addressing disparities in the frequency and impact of Alzheimer’s among Latinos, African Americans, and women. Join us as we build a more inclusive Alzheimer’s movement.

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Driving Health Equity in Dementia

About Racial and Ethnic Disparities in Alzheimer’s

UsAgainstAlzheimer’s works with our nation’s policymakers, researchers, and community leaders to better understand and address racial and ethnic disparities in Alzheimer’s. Through our LatinosAgainstAlzheimer’s and AfricanAmericansAgainstAlzheimer’s platforms we have built broad networks to address these disparities through research collaborations, tailored community outreach efforts, policy analysis, and advocacy.

Shifting Demographics Are Placing Communities of Color in the Crosshairs of Alzheimer’s

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The Latino and African American populations age 65 and older will grow 224% and 114%, respectively, by 2030, compared to a 65% growth rate for non-Latino white Americans. This demographic trend foreshadows a tremendous growth of Alzheimer’s in communities of color. According to researchers, the number one risk factor for Alzheimer’s is advanced age, and the likelihood of developing the disease doubles about every five years after age 65; after age 85, the risk reaches nearly 50%.

Latinos and African Americans Experience Higher Risk for Alzheimer’s

Hypertension, diabetes, stroke, and coronary artery disease are all risk factors for Alzheimer’s. These chronic conditions are more prevalent in Latinos and African Americans compared to other Americans, resulting in African Americans being two times more likely and Latinos being one and a half times more likely to develop Alzheimer’s than white Americans. Despite this higher prevalence, African Americans and Latinos with Alzheimer’s are, on average, less likely than white Americans to be diagnosed by a healthcare professional.

Stigma, misunderstanding, and weak linkages to our nation’s healthcare system are leading to significant disparities in Alzheimer’s and dementia diagnosis rates, access to treatment, quality care, and clinical research and trial participation rates among Latinos and African Americans.

The Toll of Alzheimer’s on Communities of Color Is Growing

Death rates among communities of color due to Alzheimer’s disease are on the rise.

The Economic Impact of Alzheimer’s on Communities of Color Is Startling

Communities of color are largely unprepared for the financial hardship of Alzheimer’s. Families can expect to spend between $41,000 and $56,000 annually in dementia-related costs, according to a RAND Corporation study. This is a frightening prospect for Latino and African Americans communities, where the median household income in 2010 was $40,785 and $39,715, respectively.

Latino Economic Impact

According to UsAgainstAlzheimer’s and the USC Roybal Institute on Aging, the total direct and indirect costs for Latinos living with Alzheimer’s will reach approximately $105.5 billion by 2060 (in 2012 dollars)—costing the U.S. economy a total of $2.35 trillion (in 2012 dollars) through 2060.

African American Economic Impact

While African Americans make up only 13.6% of the U.S. population, they bear a third of the costs of Alzheimer’s disease and other dementias. The economic burden of Alzheimer’s and other dementias for African Americans was $71.6 billion in 2012. Caregiving for African Americans with Alzheimer’s represents the bulk of these costs—more than 60%. Moreover, more than 60% of the costs are borne by the families of African American women with Alzheimer’s, and close to half of the costs are concentrated in the southern states. 

About Sex-Based Differences

Imagine a world united by women against Alzheimer’s. That vision is at the heart of WomenAgainstAlzheimer’s, a disruptive coalition of women across the globe who are demanding solutions for this health and economic crisis. We are driving awareness and change for the greatest women’s health and rights imperative of our time: fighting Alzheimer’s disease. 

Alzheimer’s disease is currently greatest challenge to women’s health.

Millions of American women are dying with Alzheimer’s, or sacrificing their health, finances, and careers to care for someone with the disease.

Women are twice as likely to suffer from Alzheimer’s.

Two-thirds of those dying with Alzheimer’s are women, and one in six women age 65 and older will develop the disease, which is twice the incidence rate of breast cancer. Yet, the disease is rarely defined as a sex- or gender-based public health crisis.

Women are twice as likely to care for someone with Alzheimer’s.

The consequences are devastating. Half of women caregivers alter or end the basic routines of their working lives, and 75% worry about caregiving’s toll on their health.

This immense burden on women will only grow heavier.

Women bear 80% of the social cost of Alzheimer’s—already estimated at over $200 billion in the U.S. alone. Imagine the impact as the global prevalence doubles every twenty years through 2050.

Those in power are ignoring this catastrophe.

Research funding is one-tenth of that for other diseases, support for affected families is rare, and public discourse overlooks the disproportionate burden on women.

 

Our Strategy for Addressing Disparities

UsAgainstAlzheimer’s has launched a multifaceted effort to address disparities in Alzheimer’s among communities of color and women through coalition building, tailored community outreach, policy advocacy, and community-centered research collaborations.

Our Signature Initiatives

LatinosAgainstAlzheimer’s Network & Coalition

LatinosAgainstAlzheimer’s marshalls resources and action to address the growing impact of Alzheimer’s and dementia on our nation’s 55 million Latino families. Through a network of cross-sector stakeholders, LatinosAgainstAlzheimer’s spearheads strategic convening and coalition building, legislative advocacy, and culturally tailored education and brain health promotion efforts across the country.

AfricanAmericansAgainstAlzheimer’s Network

AfricanAmericansAgainstAlzheimer’s is spearheading a nationwide effort to address these issues and to ultimately increase participation in clinical trials to ensure that tomorrow’s treatments will be effective for everyone.  We do this by meeting African Americans where they are—in churches, community centers, and through leading civic and professional organizations—and providing information designed to raise awareness, reduce fear and apprehension, and build trust as essential first steps to research participation. As part of this effort, AfricanAmericansAgainstAlzheimer’s is raising awareness of the disease through local productions of the award-winning stage play Forget Me Not, directed by Garrett Davis.

WomenAgainstAlzheimer’s Network & WeWontWait Campaign

As a member of the UsAgainstAlzheimer’s Network, WomenAgainstAlzheimer’s unites women across the globe to find a cure for Alzheimer’s. Our growing network of women is impatient with the slow progress being made in the Alzheimer’s fight. Driven by our passion, we are committed to ending current “business-as-usual” approaches to funding, research, and advocacy, bringing Alzheimer’s out of the shadows and into the spotlight. Women won’t wait.

Annual Alzheimer's Disparities Symposium

The Annual Alzheimer’s Disparities Symposium is a cornerstone of the National Alzheimer’s Summit and provides a forum for knowledge sharing to address disparities in Alzheimer's. This signature gathering brings together more than 200 diverse researchers, patients, caregivers, and stakeholder groups to network, brainstorm, and develop partnerships around common goals. Outcomes of the symposium include the launch of the Alzheimer’s and Dementia Disparities Engagement Network in 2016. Read the 2016 symposium recap report here and watch the 2017 symposium here.

Alzheimer’s and Dementia Disparities Engagement Network (ADDEN)

UsAgainstAlzheimer’s established ADDEN to build a national network of diverse researchers, patients, caregivers, and stakeholder groups for collaboration and knowledge sharing around barriers, facilitators, and priorities in Alzheimer’s research, programming, and policy. The project aims to foster effective and inclusive community engagement and collaboration strategies and is partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (4192-USAA). Visit the ADDEN webpage here.

Promoting Inclusion and Equity in Alzheimer's Research

Connecting Communities to Research

  • With support from the Global Alzheimer's Platform Foundation, the Patient Centered Outcomes Research Institute (PCORI), and industry, UsAgainstAlzheimer’s connects minority-serving organizations and people of color to Alzheimer's research in eight communities across the country.
  • Under the Memory Strings Alliance banner, we host community outreach events in partnership with research institutions like the University of Kansas Alzheimer's Disease Center and the Banner Alzheimer's Institute.
  • We develop culturally tailored educational materials and content focused on Alzheimer's disease and research participation.
  • We convene local leaders and community-based organizations to identify priorities, build bridges, and inform the outreach and educational efforts of our research and healthcare partners. 

Powering Change

As a result of these coordinated efforts:

  • Latino enrollment in dementia research at Kansas University grew 700% between 2016 and 2017.
  • There was a significant increase in coverage of Alzheimer's research opportunities and health issues in minority media outlets, including Univision, Salud Hispana, and others.
  • Minority-serving health professionals and Alzheimer’s research institutions built bridges for patient referrals to research and resources.
  • More than 2,500 community members were educated through our Forget Me Not play in African American communities across the nation.

Public Education

In the following publications, among others, UsAgainstAlzheimer's helped frame the urgent need to address Alzheimer’s disparities among communities of color and women:

U.S. Latinos And Alzheimer’s Disease: A Looming Crisis

Minority communities will be hit hardest by soaring rates of Alzheimer’s disease

Why women should worry about Alzheimer's

Daisy Duarte: Alzheimer’s stole my mom’s memories and mine are next

Latinos and Alzheimer’s: New Numbers Behind the Crisis

Developed with the USC Roybal Institute on Aging, "Latinos and Alzheimer’s: New Numbers behind the Crisis" is a first-of-its kind report on the economic impact of Alzheimer’s on Latino families and the American economy. 

"Latinos & Alzheimer’s: New Numbers Behind the Crisis provides critical information on the economic impact of Alzheimer’s on Latinos. While the emotional toll Alzheimer’s has on families is incalculable, the financial impact is staggering and now well documented through this first-of-its-kind report."

Congresswoman Lucille Roybal-Allard

The Costs of Alzheimer’s and Other Dementia for African Americans

"The Costs of Alzheimer’s and Other Dementia for African Americans" estimates the costs of Alzheimer's for African Americans and forecasts the economic impact of the disease for African Americans through 2050, as a function of projections in the growth of the population of African American seniors over the next 40 years.