The overall chance of a person getting Alzheimer’s disease is more than 1 in 10. But it’s even more likely if you’re Black. Estimates suggest Black Americans have about twice the risk of Alzheimer’s or another dementia compared to white people. The reasons for this aren’t clear. Understanding racial differences, why they happen, and what they mean is hard because there’s not much study or data on Alzheimer’s in Black people.
Understanding Racial Disparities in Alzheimer’s Disease
It’s possible Black people have more risk for Alzheimer’s because of other health conditions, including heart disease. Other socioeconomic and health disparities likely also play a role. Most Black Americans also say there are barriers to the care and support they need for Alzheimer’s. You can see evidence of these disparities in many different ways, such as:
- Older black people are more likely to have Alzheimer’s or some other type of dementia.
- But they also are more likely to go undiagnosed.
- 1 in 3 Black Americans think discrimination would get in the way of their care for Alzheimer’s.
- 1 in 2 say they’ve experienced discrimination in their health care.
- 42% of Black caregivers say they have trouble navigating health care or that health care providers don’t listen to them.
- About 40% also say their race makes it harder to get the best health care.
A big challenge for Black people is finding doctors and other health care providers that understand their experiences. The vast majority of Black Americans want doctors, nurses, and other providers who understand their racial background. But only 1 in 2 expect to find doctors and nurses who are culturally competent. Many Black Americans don’t trust medical research and don’t think that advances in Alzheimer’s treatment, or a future cure, would be shared equally with them.
The Black community also understands and thinks about Alzheimer’s differently than other groups. For example:
- Black people worry about getting Alzheimer’s less than people in other racial groups.
- Many Black people consider memory loss and trouble thinking to be a normal part of aging, not a disease.
- Black people and other people of color are twice as likely as white people to say they wouldn’t go to a doctor for memory problems.
- 1 in 5 say they’d find it insulting if a doctor wanted to test their thinking abilities.
- Black Americans also tend to worry less about the possibility of burdening family members.
A Closer Look at Disparities in Alzheimer’s Disease Diagnoses
A 2019 study looked at about 2,800 people diagnosed with Alzheimer's from 1994 to 2012. It found Alzheimer’s affects about 14% of people. The prevalence of Alzheimer’s was about twice as much in Black Americans as in white people.
A more recent study looked deeper at differences in dementia by race. It wanted to know more about any differences in the severity of symptoms between Black and white people. The study included 5,700 Black people and more than 31,000 white people from 39 different Alzheimer’s research centers across the U.S. About 30% of the study participants had a dementia diagnosis.
The study found that Black people actually had a diagnosis of Alzheimer’s or another dementia less often. About 27% of Black people in the study had a dementia diagnosis compared to 36% of the white people in the study. Black people were also less likely to get a diagnosis after seeing a doctor only once.
But despite those trends, Black people in the study had more risk factors for Alzheimer’s. Black study participants who did have a dementia diagnosis also showed worse symptoms. The study found that Black participants more often had delusions and hallucinations. They also had other symptoms more often, including:
- Loss of inhibition
- Trouble with movement
- Abnormal sleep patterns
- Changes in behavior
- Changes in eating or appetite
Some symptoms didn’t differ between Black and white people in the study, including:
- Other symptoms
It’s not clear exactly why these differences exist. But the researchers think they suggest Black people have more trouble getting a diagnosis of Alzheimer’s or dementia. They have worse symptoms than white people by the time they get diagnosed. So Black people may get diagnosed later, only after Alzheimer’s symptoms have gotten worse.
There are likely many factors to explain this. For instance, Black people may have more barriers to getting a referral to an Alzheimer’s center for evaluation. But differences in attitudes within the Black community also may play a role. Black people may be less likely to see a doctor for more minor memory problems that happen earlier in Alzheimer’s. So by the time they see a specialist at an Alzheimer’s center, they more often have severe symptoms, including hallucinations, delusions, and changes in their personality.
A Closer Look at Missing Data
One thing to keep in mind is that doctors don’t know as much about Alzheimer’s in Black people. That’s because Black people aren’t in studies as much. They especially aren’t in studies that look at risk factors and changes over time. This means that what’s known about Alzheimer’s risk factors – including genetics, lifestyle, and other health conditions – comes mostly from studies of white people. Experts usually assume that those findings apply to other groups. But they don’t actually know for sure what drives Alzheimer’s in Black people and if there may be differences. So more study is needed to really understand Alzheimer’s in the Black community.
It’s likely that Black people have more risk for Alzheimer’s disease for lots of reasons and the interactions among different factors. But without studying this more, nobody really knows which factors are most important.
Even when Black people enroll in studies, there are challenges. For example, Alzheimer’s is diagnosed based on the results of tests that measure trouble thinking. But the way it gets diagnosed was developed in older white people. Black people generally show differences in how they do on these tests. Education and other past experiences including discrimination affect how any person will do on cognitive tests. So it’s possible that the increased incidence of Alzheimer’s and dementia in the Black community is explained, at least in part, by differences in test performance that happen for other reasons.
Some studies of Alzheimer’s can’t be done until after a person dies. That’s when researchers can look at changes in the brain. But Black people haven’t been studied in this way as much as white people either. The data that’s available is also mixed. Some studies show less evidence of Alzheimer’s in the brains of Black people with dementia. Others found that the brain looked more similar. Still another study found that Black people with an Alzheimer’s diagnosis more often had signs of both Alzheimer’s and stroke. They also more often have more vascular disease.
Black people who participate in studies may not reflect the larger Black community. Overall, what we know suggests there may be important differences. But it’s also clear that there’s a lot doctors still don’t know about Alzheimer’s in Black people.
Where to Find Help if You Have Memory Problems
If you are worried you’re seeing changes in your memory or other Alzheimer’s symptoms, the first thing to do is find a doctor you trust. If you already have a primary care doctor, you can talk to them about your concerns first. They can help refer you to a specialist. Specialists are generally really good at diagnosing Alzheimer’s disease.
Reach out to organizations, such as the Alzheimer’s Association, for help and support. They are engaged in working with the Black community. They also try to provide culturally competent care and to reduce health disparities. The Alzheimer’s Association is also a good place to go for information and help if you want to think about enrolling in a study to help experts learn more about Alzheimer’s in the Black community.