The Importance Of Diversifying Alzheimer's Research

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John. Let's talk about what alzheimer's disease as an how it's related to other forms of dementia right so dementia is an overarching term. That refers to thinking and memory problems from lots of causes including stroke or head injury. Alzheimer's is far and away. The most common cause of dementia at least in later life and it refers to the specific process where these toxic plaques and tangles build up in the brain and eventually start killing neurons. Those are the brain cells. We used to think and remember an for black americans. How much greater is their risk of developing alzheimer's or some other form of dementia. Some studies show that the risk is twice as high as it is for a white american though the exact amount still kind of in question and by the way there's also some evidence that lat next people also have a higher risk and asian americans appear to have a low risk than white americans. Okay and do. Scientists know why they're such huge disparities not fully. Some of the difference probably has to do with known risk factors for alzheimer's so health problems like heart disease. High blood pressure diabetes obesity. All of these increase a person's risk for alzheimer's and these factors are more common in black americans and they are in white americans. There's also at least one. Genetic risk factor. Okay people who have one or two copies of a gene called abeille. Four are more likely to develop alzheimer's and the four gene appears to be more common in people of african ancestry but scientists really don't understand alzheimer's very well in anyone. They've been testing all of these alzheimer's drugs for decades and really nothing has worked so research is still. Don't know whether all of these factors put together can fully explain why alzheimer's is so much more common in black americans. John that's really tough to hear. I mean you mentioned healthcare earlier. The you know that black americans have less access to care for loved ones with alzheimer's. What do we know about that. Just a couple of weeks ago. Alzheimer's association released a report on race ethnicity and alzheimer's and i talked with brain scientists. Maria correo who is now the chief science officer there. here's part of what. She told me about what they learned from a survey of people who were caring for a friend or family member with alzheimer's among nonwhite caregivers half say they've faced discrimination when navigating through the healthcare system with a top concern being the providers. Don't even listen to what they're saying. Perhaps because of their race color or ethnicity that's really frustrating and not surprisingly black americans. Were the most likely to report discrimination. Okay so we've talked about risk we've talked about care. Let's talk about research so as scientists are trying to find treatments. What can be done to make. Sure that black americans are included in that research. Several things they can change. The racial and ethnic composition of the people who do research black researchers are more likely to have ties within black communities and are more likely to make sure that studies are inclusive. Researchers can also change the racial and ethnic composition of the people who participate in research studies and they can focus on questions about why. Alzheimer's appears to act differently in people of different races. Yeah i mean. These are really good goals to have of course but our researchers getting any closer to achieving them. I've seen some encouraging signs especially when it comes to diversifying scientific studies so for example a couple of years ago researchers formed a group called the african ancestry neuro science research initiative. I spoke to one of the brain scientists involved. Dr cuff weeds rossa. He's a psychiatrist and a professor at duke university. He told me he joined the effort when he realized that his own ancestors who came from west africa had been excluded from genetic studies of brain disorders. It was clearly an immediately evident to me how much of a problem this was right because for me as one who does what we call basic research. In other words. I take the genes that are found in human gene studies and then i studied them in model organisms in other words things like mice or rats and understand how it changes other brain works. It meant that. I was studying genes. That were specifically related to onus in folks of european ancestry which would mean that cough fleet. Derosa was only studying the genes of a narrow segment of people. Which sounds pretty. messed up. If you're trying to figure out the genetic story of how. Alzheimer's affects all people like what is the scientific justification for this approach. Years ago the logic was that it would be easier to find genes responsible for brain disorders in people of european descent. The reason is that they tend to be very similar genetically to one another. The genes of people of african ancestry vary a lot more now. Technology has made genetic sequencing so widely available that you can easily study all kinds of people and scientifically you should because people with different ancestries can have genetic differences that affect their risk for diseases like alzheimer's absolutely and have scientists learned anything new about alzheimer's disease from studying it in black americans. Maybe you know that. Jean april four. That increases a person's risk of developing alzheimer's. Especially if you inherit two copies one from each of your parents so the gene is more common among black americans but it may be less risky for them. Some other genetic factors seems to protect people of african ancestry from the bad effects of a four. I spoke with dr daniel weinberger. He's a scientist at the lieber institute in baltimore. And he's also part of the african ancestry neuroscience research initiative. Here's what he told me about april four. If you inherit the risk form of that gene from both of your parents and your european ancestry that increases your likelihood of manifesting outside disease later in life about twenty fold if have african ancestry the risk from inheriting that gene from both your parents is about a fourth of what it is if you were of european ancestry so if scientists could figure out what the protective mechanism is they might be able to develop a drug. That would help protect all people who have at least one copy of the four gene and that is by the way tens of millions of people in the us alone now. That sounds really promising. But it's gonna take a lot more research right that also broadens who's being included in that research it will truly diversifying the groups of people in research studies is really challenging and scientists know. They can't do it on their own. So the african ancestry project for example has involved. People like reverend alvin hathaway. He's the pastor of union baptist church in baltimore. He told me one challenge facing scientists. Is that a lot of black. Americans are pretty skeptical about this kind of research. You know clearly when you begin to talk about The brain you begin to talk about the genome data set immediately within the community. That triggers all kinds of suspicions It triggers a lot of suspicions because There has been arguments that The caucasian brain is different from the brain of people of african descent and one of the amazing revelations that i found. Was that when you actually look at brain tissue. You can't discern difference right. Scientists propped up thinking for a long time. And you're saying the legacy of that lives on. Yes it does so john. How'd you researchers with the african ancestry project and other groups navigate that the alzheimer's association did a survey a few months ago. That found that one in five black americans would actually feel insulted. If a doctor even suggested a cognitive assessment to detect alzheimer's so of medicine has a lot of work to do to build trust with black americans and other minority groups. I talked about what that might take with. A scientist named lisa barnes. She's a professor and also a cognitive neuropsychologist at the old timers disease center in chicago. She told me she often. Here's the same comment. When she approaches groups that have been marginalized about doing a research study especially when that may take years to complete these researchers come in and they collect all these data than we never hear from you again so we we also give back so we who make sure that we go back to the community and update them on what we're finding we give their vice about how we're interpreting data. So we try to really make it a partnership between us and the community. And i think that that goes a long way and building trust and and and having them stay with us for the long haul.

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