A big challenge for Black people is finding doctors and other healthcare providers that understand their experiences. The vast majority of Black Americans want doctors, nurses, and other providers who understand their racial background. However, 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 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:
- Agitation
- Aggression
- Loss of inhibition
- Irritability
- 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:
- Anxiety
- Apathy
- Indifference
- Other symptoms
It’s not clear exactly why these differences exist. However, 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.
