Dr. Barry Rovner is professor of Psychiatry and Neurology and the Director of the Alzheimer’s Disease and Dementia Center at Thomas Jefferson University, Philadelphia, PA. He treats patients with Alzheimer’s disease, published over 100 articles and chapters, served on the American Psychiatric Association’s practice guideline committee for Alzheimer’s disease, leads a National Institutes of Health-funded research program, and tests cutting-edge, new medications for Alzheimer’s disease. Dr. Rovner graduated from Jefferson in 1980 and completed his residency and fellowship training at Johns Hopkins Hospital.
ElderBranch interviewed Dr. Rovner to discuss his paper, “Cultural diversity and views on Alzheimer disease in older African Americans.” Dr. Rovner wrote the paper, along with Dr. Robin Casten of Jefferson Medical College and Lynn Harris of Center in the Park, in Philadelphia, PA.
I was surprised to read that African Americans are at higher risk for Alzheimer’s disease and that it is more likely to be diagnosed at later stages than in white Americans. Before we dig into your research, can you explain why these differences exist?
Probably the main reason why is because there is a higher prevalence of other diseases that increase the risk for Alzheimer’s. In particular, that would be high blood pressure, diabetes, and high cholesterol. Those are three conditions that increase the risk of Alzheimer’s for everyone, but African Americans are more likely to have those diseases untreated than white people.
The other is education. Education is protective against Alzheimer’s. The more years of education you have, the lower your risk. And many older African Americans were educated in this country in a time when perhaps schools for African Americans were of a lower quality.
And, they may have had less of an opportunity to go to school, aside from issues of segregation and quality, simply because of economic demands. So they may have had fewer years of school, and of the schooling that they had, it may have been of a lower quality.
What led you to research this topic?
I am an Alzheimer’s researcher primarily – I have always been interested in memory and risks for Alzheimer’s.
It is well known that African Americans have worse health outcomes across almost all diseases: hypertension, Alzheimer’s disease, diabetes. I became aware of these disparities and wanted to investigate why they might exist and find ways to reduce them.
That led me to think about cultural differences which might explain why there are disparities in health outcomes. There aren’t just disparities between whites and blacks, there are also disparities within blacks – that is what we focused on.
Please describe how you conducted your study.
To get at the question about whether there are variations in cultural perceptions that might be relevant to Alzheimer’s disease, we went to the community. A large senior center, Center in the Park, did the outreach for us – this was really important on another dimension: the mistrust that African Americans have of white medical researchers. That mistrust has to do with abuses that white doctors perpetrated on African Americans, particularly the Tuskegee experiments.
We administered three questionnaires. We were looking for associations between cultural characteristics, in particular present-time orientation, future-time orientation, and religiosity. We wanted to see how they related to knowledge about Alzheimer’s disease. The third domain was risk-perceptions – i.e. how much somebody thinks they are at risk of something happening to them.
Health knowledge and risk-perception are important determinants of health-seeking behavior. Whether you think something is wrong or not and go to the doctor. If you think your risk is low, you don’t go to a doctor even if you are having symptoms. Or perhaps you think it is God’s will and you don’t think about the symptoms as something to pursue medically.
And a lot of it depends on how much you know. So we wanted to look at the associations between those three domains – cultural perceptions, knowledge, and risk perceptions.
What were the key findings from your research?
Within the population of people who were recruited, there is variability in cultural characteristics, variability in knowledge about Alzheimer’s disease, and variability in risk perceptions. We tried to see what relationships these have with each other.
Probably the strongest finding had to do with the perception of present-time orientation. Present-time orientation is basically living in the moment and having less concern or ability to think about future issues. People who are more present-time oriented often face day-to-day life struggles and don’t have the time or resources to address future concerns. If you are poor and have low expectations of society and health, you are driven to live in the moment and you can’t contemplate and plan for the future. So not surprisingly, people who were most present-time oriented were more likely to believe they didn’t have any control over their health. If they were going to get Alzheimer’s disease, it was something that was out of their control and more related to God’s will. That’s how present-time orientation related to risk perception. Also, they had lower knowledge about Alzheimer’s disease.
One limitation to this research was that we did not assess education. People with high present-time orientation may have had lower education. Maybe education was the factor that determines risk perception and knowledge about Alzheimer’s disease.
What do you think that we as a society, either at the public policy level or at the health care provider level, should do to improve the likelihood that Alzheimer’s in African Americans can be diagnosed earlier?
From a policy standpoint, probably the most effective solution would be to have public health releases. It is important to spread the knowledge about Alzheimer’s disease and the associated risk factors – so a public health campaign, much as has been done with smoking.
At the health care provider level, primary care physicians should be assessing all of their older patients for memory problems. Here is the biggest problem – primary care doctors need better education on the matter. Even if an older patient is noticing problems with their memory and they approach their doctor, I think a lot of times doctors say “oh you’re just getting old” and they dismiss it. And, if you are more likely to do that for cultural reasons with an African American patient than with a white patient – I don’t know if that happens, but it might – then that is where an African American patient may be diagnosed at a more advanced stage of Alzheimer’s because the doctor didn’t give it the same scrutiny as they may have with a white patient.
But on the other side, I know from research that I have done and others have done, African Americans are more likely to see memory loss as a normal part of aging and not something they go to the doctor for.
There are all these cultural biases and misperceptions that are floating around among patients and doctors, and that is what I think needs to be corrected through public health campaigns, medical literature and churches and senior centers.
In this particular paper, we suggest that doctors ask their patients about present-time orientation in a non-threatening way. And then the doctor will be aware that this person is at higher risk for all kinds of health problems because of their present-time orientation.
Do you believe the rollout of the Affordable Care Act will improve the chances that patients of all races can have Alzheimer’s diagnosed earlier?
It’s a great point, and it does carry the hope that doctors will do a better job. If they are getting paid based on performance, and they have a population of people who are doing worse than others, particularly if they are getting diagnosed later and become more costly to care for, then there is a need to make sure they are addressing these needs earlier.
There is still going to be a long road to get there, but in theory, the ACA should address some of these issues.