“That's what's wrong with you people, you don't want help, you just want to complain.”
Jarring, insensitive words no patient–or person–should ever have to hear from anyone, let alone from your neurologist. And moreover, when you’re feeling especially vulnerable because you were told, just minutes before, that you have dementia.
Doris Woodward was diagnosed with early-stage dementia at the age of 77 in May 2006. When the initial signs of forgetfulness showed up, her daughter Loretta Veney wasn’t too worried. That changed when she received a call that her mother had skipped her Tai Chi class–something she would never miss–and that she also seemed disoriented. Veney knew something wasn’t right and immediately made an appointment for her mother to see a neurologist.
“From the moment we walked into the neurologist’s office, I didn’t like him. He was condescending, rude, and talked at me as if my mother wasn’t in the room,” said Veney, author, motivational speaker, and trainer. “As soon as he said dementia, he wrote a prescription for Aricept. My mom, who is the least complaining person I know, simply asked what Aricept was and that she didn’t want to take a drug.”*
And that’s when those upsetting words poured out of the neurologist’s mouth, “...you people...”
Was it ageism? Racism? Given what we know about health disparities and how both African Americans and older people report being treated, it was likely a combination of both.
Sparking New Conversation
Current events such as the COVID-19 pandemic and Black Lives Matter movement have sparked new conversations and questions about race, equality, and health. Healthcare should be accessible and treatment equal for all populations regardless of gender, race, and socioeconomic status, yet 244 years after Thomas Jefferson wrote “all men are created equal,” they are not.
“Stigmas, misunderstandings, 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 of care, and clinical research and trial participation rates among Latinos and African Americans,” according to UsAgainstAlzheimer’s.
To that end as I get ready with my family to celebrate the 4th of July, a holiday that commemorates the idea that all men are created equal, we would be remiss if we didn’t address racial and ethnic disparities in dementia, and some of the social determinants behind those disparities.
We face tough questions about including women and persons of color in those bold words written in 1776. And in healthcare, we face a world where your social economic status is more predictive of your health outcomes than your genetics. We are not living up to equality under the law or in healthcare.
Prevalence and Risk Factors
Latinos are one and a half times more likely to develop Alzheimer’s and related dementias (ADRD) compared to white Americans. And older African Americans, like Doris, are approximately twice as likely to have ADRD as older white Americans.
According to UsAgainstAlzheimer’s, by 2030, African Americans and Latinos will make up nearly 40 percent of the 8.4 million American families affected by Alzheimer’s.
“While the disproportionate impact of Alzheimer’s on people of color is still being studied, we know that risk factors such as diabetes and hypertension that are more predominant in communities of color increase one’s susceptibility to Alzheimer’s,” said Jason Resendez, Executive Director of the LatinosAgainstAlzheimer's Coalition, convened by UsAgainstAlzheimer's.
There are risk factors for dementia that cannot be changed such as aging and genetics. But it is a misconception that dementia cannot be prevented. In fact, studies have shown that a third of dementia cases globally can be prevented if we change modifiable lifestyle factors, such as eating healthy, getting enough sleep, and exercising regularly. While these are ideal and might sound easy enough to adopt, in reality, not everyone has access to resources to make these changes.
“We are learning more and more about the interconnections between Alzheimer’s risk and the social determinants of health like environmental exposures and access to healthy food. And critically, we know that racial discrimination shapes one’s access to the healthcare system and to research opportunities, placing people of color at a much greater disadvantage in combating Alzheimer’s through early detection, preventative health measures, and research participation,” said Resendez. “For these reasons, health equity must be a priority in our response to Alzheimer’s at the community level and nationally.”
The Social Determinants of Healthcare
The Office of Disease Prevention and Health Promotion (ODPHP) defines social determinants of healthcare as conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.
According to the ODPHP, examples of these resources that affect health outcomes include safe and affordable housing, access to education, public safety, availability of healthy foods, and local emergency/health services.
The Effect on Brain Health
Studies have shown that several socioeconomic factors impact brain health, increasing the risk of dementia.
According to JAMA Neurology, dementia is more prevalent and occurs 10 years earlier in low and middle income countries than in high income countries due to barriers such as:
- the lack of access to education and leisure activities
- poor nutrition and lack of access to healthy food (e.g. living in the food desert)
- poor living conditions, and
all of which contribute to cognitive decline.
- A study on neighborhood socioeconomic status and sleep quality on the impact of dementia risk found that individuals who lived in neighborhoods of poorer socioeconomic status—characterized by low levels of education, high unemployment, and use of public assistance—had poor sleep quality and experienced the greatest cognitive decline over time. Conversely, people living in high socioeconomic status neighborhoods had the highest cognitive function, regardless of reported sleep quality.
- Studies have also shown that a lower education level is associated with a higher risk of dementia and earlier symptom onset by up to eight years.
- Access to a healthy diet is also important for brain health. However, fresh fruits and vegetables can be cost prohibitive and result in the consumption of processed foods high in sugar and saturated foods, which are cheaper to purchase. According to the U.S. Department of Agriculture, more than 23.5 million people in the United States live in food desert areas where they do not have access to supermarkets or other stores selling a variety of affordable healthy food options.
- Stress is also a risk factor for dementia, and living conditions such as poverty, domestic and sexual violence, and displacement have all been associated with a higher risk of cognitive impairment.
The Economic Impact
More than 5 million Americans are living with Alzheimer’s, and that number is expected to increase to 14 million in 2050. Currently, there is no cure or treatment for ADRD. The projected statistics are staggering and taking into consideration the higher prevalence of ADRD in minority groups, there will be implications on increasing healthcare costs.
“Though blacks comprise approximately 13.4 percent of the U.S. population, we are bearing over 33 percent of the national costs of Alzheimer’s,” said Stephanie Monroe, Director of Equity and Access at UsAgainstAlzheimer's and Executive Director at AfricanAmericansAgainstAlzheimer's.
And according to UsAgainstAlzheimer’s, Alzheimer’s will cost Latino families a cumulative $2.3 trillion by 2060.
Improve Brain Health by Addressing the Disparities
Increase Diversity in Clinical Trials
According to the U.S. Food and Drug Administration (FDA), diversity in research is crucial to ensure the safety and effectiveness of drugs and medical products for all groups of people. It is important to note that groups at higher risk for dementia and other diseases will eventually become the patients consuming the approved drug/medical product, thereby reinforcing the need for their inclusion in trials.
Given the statistics on the development of ADRD in different populations, one would assume that there is diversity in clinical trials. But unfortunately, that is not really the case.
According to Resendez, there are several structural barriers that place Black, Indigenous, People of Color (BIPOC) at a severe disadvantage when it comes to accessing Alzheimer’s related research:
- Many ADRD trials have strict inclusion criteria that preclude individuals living with diabetes, hypertension, and other health conditions from participating in the lion’s share of ADRD clinical trials. BIPOC - particularly those at lower income and education levels - are more likely to have these conditions than whites and more affluent individuals.
- There is a lack of research infrastructure that reaches into underserved communities and connects to health providers serving BIPOC. According to Resendez, “Limiting clinical trial access to traditional academic medical centers is akin to modern day redlining in healthcare research.”
- There is a long history of racism that has eroded trust in the research enterprise among BIPOC. The Tuskegee experiment, Henrietta Lacks, and the Havasupai tribe are all examples of horribly unethical and improper research involving these communities– the effects of which continue to hinder progress in research to this day.
In 1993, the National Institutes of Health (NIH) addressed the lack of diversity by adopting a policy requiring federally funded clinical research to include women and minorities. But 27 years later, participants of clinical trials today still lack ethnic diversity (72 percent are white), although there was some progress. According to the FDA, there was an increase in
- African American participants from 5 percent in 2010 to 9 percent in 2019
- Latino participants from 1 percent in 2010 to 18 percent in 2019
Recent efforts to move the needle on diversity in research are encouraging:
- In 2018, the National Institute on Aging (NIA) announced its National Strategy for Recruitment and Participation in Alzheimer's and Related Dementias Clinical Research to help engage and recruit more diverse groups of participants for clinical trials.
- In that same year, the NIH launched the All of Us Research Program to collect and study data from one million or more people living in the United States; enrollment is expected to last at least 10 years. With a commitment to recruit a diverse participant pool that includes members of groups who have been left out of research in the past, the All of Us goal is to help researchers increase their understanding of why people get sick or stay healthy.
- The FDA called for increased participation and diversity in clinical trials, offering guidance for researchers and recommendations for the collection of race and ethnicity data.
Outreach to Children and Minorities
“One thing that must be done to ensure that minorities are involved in research, treatments, and prevention of Alzheimer’s and related dementias is to ask them to participate,” said Monroe. “UsAgainstAlzheimer’s community outreach efforts have resulted in us reaching over 30,000 individuals in 27 key cities across the United States with effective community-based strategies of engagement and building awareness.”
According to Monroe, 80 percent of individuals answered yes, when asked if they would be interested in participating in research. When asked if they had ever been asked to participate, a similar number responded “no” they had never been asked. Research America confirmed similar responses in their engagement research.
Loretta Veney is in agreement. Upon her mother’s diagnosis, Veney began learning everything she could about the disease and hoped to share that information so others could be more prepared for this devastating diagnosis than she had been. She believes that we should target school-aged kids when it comes to education. “We need to start educating kids in middle and high school about the benefits of clinical trials so they can pass it on to their parents, and to have churches offer forums on the benefits of clinical trials,” said Veney, who wrote her first book, Being My Mom's Mom, highlighting the first six years of her family's dementia journey. “The fact is most African-Americans are terrified of trials and fear they can die from them or that they are just ‘experiments.’ With all of the experimentation that went on in early clinical trials using African Americans, there was no trust in them.”
Veney also believes education is key in erasing the fear, and that education on research and medicine should be offered in areas with limited healthcare options. African Americans can't always afford medical care, but they should at least have access to free information, she said.
Speaking about Alzheimer's at a church luncheon in the inner city of Baltimore last fall, Veney said, “People showed up dressed up and hungry not only for lunch but also for the information, and the fact that I was also African American was so amazing to them!” Veney’s number one goal is to continue discussing and working together to erase the stigma of Alzheimer's in the community.
Take Charge of Your Brain Health
As a neuropsychologist, I encourage everyone to test their cognitive health early and often.
Dementia is often overlooked; 40 to 80 percent of patients who are diagnosed with dementia go undiagnosed until later stages. And according to the Alzheimer’s Association, African Americans tend to be diagnosed at a later stage of Alzheimer’s disease, which limits the effectiveness of treatments that depend upon early intervention.
While the racial and ethnic disparities of dementia are still there, we are moving in the right direction to eliminate them.
The Alzheimer’s Association have stepped up their outreach to African American communities through their chapters, and are developing tools for outreach, education, and services. They are also working in tandem with the Administration on Aging to find new ways to reach underserved communities.
And according to Monroe, the research community is beginning to understand the importance of identifying calling out and responding barriers that prevent communities from achieving health equity. “What’s needed next is increased transparency, accountability, and concrete strategies for how to eliminate barriers so that all can truly have an opportunity for health equity,” she said. “Achieving equity requires an enormous investment of will and resources. It can’t be an afterthought. It must be baked in from the beginning, ‘with’ communities not just ‘for’ communities and must be sustainable.”
A Call for Action
“We need to work hard to ensure that medical care and health information is available to everyone!” said Veney. “I know there are lots of caring people out there who work hard to serve the African American community, however we can and must do much better. We should grow up believing that we will live long healthy lives like everyone else and should have access to healthy food and excellent healthcare.”
Current events have spurred people to take action: to support black-owned businesses, take a stand and speak out for equality, and ignited a call for change.
What will you do to intervene to eliminate the racial and ethnic disparities in dementia?
*As it turned out, four weeks after Doris’ prescription of Aricept, she suffered a side effect that stopped her heart while at a routine check-up with her general practitioner. “The ER doctor said mom should never have been prescribed it as she was also taking Toporol to slow down her heartbeart,” said Veney. “If I hadn’t been in the exam room that day, she’d be dead.”
Doris today is 92 and according to Veney is doing physically well. After that incident, they found another neurologist who treated them with more respect and dignity.
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