Lag In Brain Donation Hampers Understanding Of Dementia In Blacks
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Dorothy Reeves agreed to donate both of their brains after death to the University of California-Davis for research.","credit":"Anna Gorman/KHN","description":"Dorothy and Levi Reeves stand in their Oakland, Calif., home, holding their wedding photo from 57 years ago. Dorothy Reeves agreed to donate both of their brains after death to the University of California-Davis for 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href=\"http://khn.org/news/author/anna-gorman/\" target=\"_blank\" rel=\"noopener noreferrer\">\u003cstrong>Anna Gorman\u003c/strong>\u003c/a>","isLoading":false}},"breakingNewsReducer":{},"campaignFinanceReducer":{},"firebase":{"requesting":{},"requested":{},"timestamps":{},"data":{},"ordered":{},"auth":{"isLoaded":false,"isEmpty":true},"authError":null,"profile":{"isLoaded":false,"isEmpty":true},"listeners":{"byId":{},"allIds":[]},"isInitializing":false,"errors":[]},"navBarReducer":{"navBarId":"home","fullView":true,"showPlayer":false},"navMenuReducer":{"menus":[{"key":"menu1","items":[{"name":"News","link":"/","type":"title"},{"name":"Politics","link":"/politics"},{"name":"Science","link":"/science"},{"name":"Education","link":"/educationnews"},{"name":"Housing","link":"/housing"},{"name":"Immigration","link":"/immigration"},{"name":"Criminal Justice","link":"/criminaljustice"},{"name":"Silicon Valley","link":"/siliconvalley"},{"name":"Forum","link":"/forum"},{"name":"The California 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FM","link":"/"}},"stateofhealth_360752":{"type":"posts","id":"stateofhealth_360752","meta":{"index":"posts_1591205157","site":"stateofhealth","id":"360752","score":null,"sort":[1502324447000]},"guestAuthors":[],"slug":"lag-in-brain-donation-hampers-understanding-of-dementia-in-blacks","title":"Lag In Brain Donation Hampers Understanding Of Dementia In Blacks","publishDate":1502324447,"format":"standard","headTitle":"Kaiser Health News | State of Health | KQED News","labelTerm":{"term":3007,"site":"stateofhealth"},"content":"\u003cp>OAKLAND, Calif. — The question came as a shock to Dorothy Reeves: Would she be willing to donate her husband’s brain for research?\u003c/p>\n\u003cp>She knew dementia would steadily take Levi Reeves’ memories of their 57-year marriage, his remaining lucidity and, eventually, his life. But to let scientists take his brain after he died? That seemed too much to ask.\u003c/p>\n\u003cp>“I didn’t want to deal with the idea of his death,” said Reeves, 79. “I certainly didn’t want to deal with brain donation.”\u003c/p>\n\u003cp>As an African-American and a former schoolteacher, Reeves is keenly aware of the history of racism in health care, including callous and sometimes deadly experimentation. Reeves said she never personally has had a bad experience with doctors or the medical system. But she’s old enough to remember the infamous Tuskegee Institute syphilis study, during which hundreds of mostly illiterate black sharecroppers were assured they were being treated for “bad blood” even as doctors withheld effective treatment over decades.\u003c/p>\n\u003cp>Top researchers say such wariness, while understandable, is thwarting efforts to understand and treat Alzheimer’s disease and other forms of dementia in black patients today. African-Americans suffer from these cognitive impairments at \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4084964/\" target=\"_blank\" rel=\"noopener noreferrer\">two to three times the rate of non-Hispanic whites\u003c/a>, yet they are less likely to take part in research.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>That has created a vexing challenge for scientists, who are trying to persuade more blacks to participate in studies — both while they are alive and after they die. A critical part of their efforts is asking for brain donations.\u003c/p>\n\u003cp>“There is a lot of terrible history that we have to acknowledge and move past,” said Lisa L. Barnes, a neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago. “A lot of minority communities still feel that research involves being a guinea pig. Nobody wants to be used. Nobody wants to be a guinea pig.”\u003c/p>\n\u003cp>Shirley Fitch, who lives south of Chicago, said no thank you to Rush researchers on behalf of her husband, Clarence. The former university professor died last summer at age 86, seven years after being diagnosed with dementia.\u003c/p>\n\u003cp>“I’m hesitant because of distrust,” said Fitch. “Once my brain is donated for one purpose, who is to say it won’t be used for another purpose? It is out of your control.”\u003c/p>\n\u003cp>Although Shirley Fitch is participating in non-Alzheimer’s research at Rush, she said the historical abuses of black people have been “awful and hard to get over.”\u003c/p>\n\u003cp>Even today, blacks tend to get worse treatment from hospitals, she said. “It all gets stirred in the pot as to feelings about bias.”\u003c/p>\n\u003cp>\u003c!--side-by-side-->\u003c/p>\n\u003cfigure id=\"attachment_360754\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-360754\" src=\"https://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2017/08/brain-donation-2-800x533.jpg\" alt=\"Dorothy Reeves, 79, helps feed her husband, Levi, who has Lewy body dementia. Reeves, a former schoolteacher, initially declined brain donation but later agreed — for both her and her husband.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2.jpg 1170w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Dorothy Reeves, 79, helps feed her husband, Levi, who has Lewy body dementia. Reeves, a former schoolteacher, initially declined brain donation but later agreed — for both her and her husband. \u003ccite>(Anna Gorman/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>The Knowledge Gap\u003c/strong>\u003c/p>\n\u003cp>The precise explanations for the disparities among blacks and whites are unknown. Until recently, most of our understanding of the pathology of dementia was largely based on studies of white patients.\u003c/p>\n\u003cp>“We have a real knowledge gap in accurately knowing if dementia is different in minorities as compared to whites,” said John Olichney, a neurologist and clinical director of the Alzheimer’s Disease Center at the University of California-Davis.\u003c/p>\n\u003cp>Scientists say blacks’ disproportionate rates of dementia may be related in part to the prevalence of disorders that raise the risk of vascular disease: diabetes and hypertension, for instance. Socioeconomic factors such as higher rates of poverty and lower levels of education also seem to play a significant role, according to \u003ca href=\"http://www.bmj.com/content/347/bmj.f7051\" target=\"_blank\" rel=\"noopener noreferrer\">research\u003c/a> led by the University of California-San Francisco.\u003c/p>\n\u003cp>Despite advances in imaging technology that allows researchers to peer into the brains of live patients, studying the organ after death is crucial to a deeper understanding of the causes and progression of disease and to developing drug treatments, Olichney said.\u003c/p>\n\u003cp>The challenge is getting enough brains from different populations to study. It’s not just a matter of assuring potential donors that Tuskegee and other ethical debacles are in the past. To gain trust, Alzheimer’s research facilities such as UC-Davis and Rush University are also trying to diversify their staffs, collaborate with community leaders and study religious and cultural beliefs on brain donation.\u003c/p>\n\u003cp>For example, some African-Americans don’t want their brain separated from their body when they are buried, said Stephanie Monroe, director of African Americans Against Alzheimer’s, which is engaged in various efforts to educate people about the disease and its effects.\u003c/p>\n\u003cp>“Many people believe in ashes to ashes and dust to dust,” she said.\u003c/p>\n\u003cp>\u003cstrong>A Changing Mindset\u003c/strong>\u003c/p>\n\u003cp>Alzheimer’s researchers at UC-Davis recognized about 15 years ago that they needed a more representative slice of the population, especially in diverse Northern California. At the time, centers around the country were mostly studying well-educated, white people who volunteered, Olichney said.\u003c/p>\n\u003cp>So they started reaching out to both the African-American and Latino communities. “That was a real change in our mindset,” he said.\u003c/p>\n\u003cp>Today, nearly 400 patients, including about 70 African-Americans, are enrolled in its longitudinal study of the progression of dementia, and they come in yearly for memory evaluations and other tests. Of the study participants, about 270 have agreed to donate their brains after death, more than 40 of them African-American.\u003c/p>\n\u003cp>At the Rush Alzheimer’s Disease Center, doctors started following a cohort of African-Americans in 2004 and, some seven years later, began to seek brain donation for the study. Close to 500 African-Americans have signed up to donate after death, and 72 brains already have been donated, Barnes said.\u003c/p>\n\u003cp>Though she is pleased with the high rate of commitment, she noted that more works needs to be done. In another study, about 3,100 white participants agreed to brain donation, with 1,400 already donated. Recruiting African-Americans “takes a lot of effort and a lot of work,” she said. “Every year, we bring it up again and revisit it with those who are reluctant. But if someone is really firm, we don’t push the subject.”\u003c/p>\n\u003cp>Research on the donated brains has led to intriguing findings. One Rush study, published in 2015, found that blacks with Alzheimer’s disease were more likely than whites to have other disorders, such as Lewy body dementia. Twice as many blacks with Alzheimer’s as whites with the disease also had Lewy body dementia, in which protein deposits build up in nerve cells, according to the study. Blacks with dementia also had more severe disease of the arteries, the \u003ca href=\"http://europepmc.org/articles/pmc4540250\">study\u003c/a> found.\u003c/p>\n\u003cp>The number of blacks studied was relatively small — 41 compared with 81 whites — yet its findings were potentially important. That’s because the presence of other diseases in the brain means blacks may not respond as white patients do to drugs aimed specifically at Alzheimer’s.\u003c/p>\n\u003cp>Even for experienced research institutions, getting people to participate in donation remains complicated — in part, because families don’t necessarily agree about it among themselves.\u003c/p>\n\u003cfigure id=\"attachment_360755\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-360755\" src=\"https://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2017/08/brain-donation-4-800x533.jpg\" alt=\"Andrea Gourdine holds a photo of her mother, Gladys Brown, who died in 2012 after being diagnosed with Alzheimer’s. Brown donated her brain to the University of California-Davis, for research.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4.jpg 1170w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Andrea Gourdine holds a photo of her mother, Gladys Brown, who died in 2012 after being diagnosed with Alzheimer’s. Brown donated her brain to the University of California-Davis, for research. \u003ccite>(Anna Gorman/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Andrea Gourdine remembers clearly when her mother, Gladys Brown, started behaving oddly. Once, the elder woman forgot a stove burner was on and a dish exploded. Then she stopped bathing regularly. “And she was normally fastidious,” Gourdine said. “Something was really, really wrong.”\u003c/p>\n\u003cp>Brown enrolled in the research at UC-Davis, was diagnosed with Alzheimer’s in 2005 and soon after agreed to donate her brain. It won’t help me, Brown told researchers, but it could help others. She died in 2012, at 87.\u003c/p>\n\u003cp>Gourdine also signed up for the UC-Davis study and has consented to donate her brain. She does not have Alzheimer’s, but researchers are seeking brains of those without dementia for comparison.\u003c/p>\n\u003cp>She is aware of the history of medical abuse of African-Americans but says she doesn’t see any point in focusing on the past.\u003c/p>\n\u003cp>Gourdine’s sister, India Collins, disagrees with her sister and objected to her mother’s donation.\u003c/p>\n\u003cp>“I have problems with scientific research and I get very upset with scientific data and outcomes in general,” said Collins. She questions how helpful it is to African-Americans. “Why would you want to participate in their research if it does not benefit you?”\u003c/p>\n\u003cp>\u003cstrong>Expanding The Brain Trust\u003c/strong>\u003c/p>\n\u003cp>Gwen Gates, a recruiter and research coordinator at the UC-Davis center, goes to churches, health fairs and other events to build trust and develop deeper relationships among the university and minority communities. Patients and families want to know what scientists do with the brains. They worry about how relatives will react. They fear donation will interfere with funeral arrangements or their plans for an open casket.\u003c/p>\n\u003cp>She assures them it won’t. She explains that brain donations will help future generations, perhaps even in their own family.\u003c/p>\n\u003cp>Occasionally, families readily agree. Some adamantly refuse. For others, the decision is a process.\u003c/p>\n\u003cp>Dorothy Reeves declined brain donation initially but agreed to sign up herself and Levi, 81, for observational studies. Then she saw what the disease could do. Her husband, who has Lewy body dementia, went under a table one day to get a magazine and couldn’t find his way out. He forgot her name and those of his children.\u003c/p>\n\u003cp>She thought about all the other people like Levi.\u003c/p>\n\u003cp>“It affects people in ways you can’t imagine — regardless of your race,” she said. “It’s almost unbearable.”\u003c/p>\n\u003cp>Soon the researchers had their answer. Yes, she would agree to donation — for both of them.\u003c/p>\n\u003cp>\u003cem>KHN’s coverage in California is funded in part by \u003ca href=\"http://www.blueshieldcafoundation.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Blue Shield of California Foundation\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ca href=\"http://www.kaiserhealthnews.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Kaiser Health News\u003c/a> (KHN) is a national health policy news service. It is an editorially independent program of the \u003ca href=\"http://www.kff.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Henry J. Kaiser Family Foundation\u003c/a>.\u003c/p>\n\n","blocks":[],"excerpt":"A history of racism and cruel experimentation in health care are among the reasons African-American families oppose donating patients’ brains for study.","status":"publish","parent":0,"modified":1502324447,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":47,"wordCount":1755},"headData":{"title":"Lag In Brain Donation Hampers Understanding Of Dementia In Blacks | KQED","description":"A history of racism and cruel experimentation in health care are among the reasons African-American families oppose donating patients’ brains for study.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Lag In Brain Donation Hampers Understanding Of Dementia In Blacks","datePublished":"2017-08-10T00:20:47.000Z","dateModified":"2017-08-10T00:20:47.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"360752 https://ww2.kqed.org/stateofhealth/?p=360752","disqusUrl":"https://ww2.kqed.org/stateofhealth/2017/08/09/lag-in-brain-donation-hampers-understanding-of-dementia-in-blacks/","disqusTitle":"Lag In Brain Donation Hampers Understanding Of Dementia In Blacks","nprByline":"\u003ca href=\"http://khn.org/news/author/anna-gorman/\" target=\"_blank\" rel=\"noopener noreferrer\">\u003cstrong>Anna Gorman\u003c/strong>\u003c/a>","path":"/stateofhealth/360752/lag-in-brain-donation-hampers-understanding-of-dementia-in-blacks","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>OAKLAND, Calif. — The question came as a shock to Dorothy Reeves: Would she be willing to donate her husband’s brain for research?\u003c/p>\n\u003cp>She knew dementia would steadily take Levi Reeves’ memories of their 57-year marriage, his remaining lucidity and, eventually, his life. But to let scientists take his brain after he died? That seemed too much to ask.\u003c/p>\n\u003cp>“I didn’t want to deal with the idea of his death,” said Reeves, 79. “I certainly didn’t want to deal with brain donation.”\u003c/p>\n\u003cp>As an African-American and a former schoolteacher, Reeves is keenly aware of the history of racism in health care, including callous and sometimes deadly experimentation. Reeves said she never personally has had a bad experience with doctors or the medical system. But she’s old enough to remember the infamous Tuskegee Institute syphilis study, during which hundreds of mostly illiterate black sharecroppers were assured they were being treated for “bad blood” even as doctors withheld effective treatment over decades.\u003c/p>\n\u003cp>Top researchers say such wariness, while understandable, is thwarting efforts to understand and treat Alzheimer’s disease and other forms of dementia in black patients today. African-Americans suffer from these cognitive impairments at \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4084964/\" target=\"_blank\" rel=\"noopener noreferrer\">two to three times the rate of non-Hispanic whites\u003c/a>, yet they are less likely to take part in research.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>That has created a vexing challenge for scientists, who are trying to persuade more blacks to participate in studies — both while they are alive and after they die. A critical part of their efforts is asking for brain donations.\u003c/p>\n\u003cp>“There is a lot of terrible history that we have to acknowledge and move past,” said Lisa L. Barnes, a neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago. “A lot of minority communities still feel that research involves being a guinea pig. Nobody wants to be used. Nobody wants to be a guinea pig.”\u003c/p>\n\u003cp>Shirley Fitch, who lives south of Chicago, said no thank you to Rush researchers on behalf of her husband, Clarence. The former university professor died last summer at age 86, seven years after being diagnosed with dementia.\u003c/p>\n\u003cp>“I’m hesitant because of distrust,” said Fitch. “Once my brain is donated for one purpose, who is to say it won’t be used for another purpose? It is out of your control.”\u003c/p>\n\u003cp>Although Shirley Fitch is participating in non-Alzheimer’s research at Rush, she said the historical abuses of black people have been “awful and hard to get over.”\u003c/p>\n\u003cp>Even today, blacks tend to get worse treatment from hospitals, she said. “It all gets stirred in the pot as to feelings about bias.”\u003c/p>\n\u003cp>\u003c!--side-by-side-->\u003c/p>\n\u003cfigure id=\"attachment_360754\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-360754\" src=\"https://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2017/08/brain-donation-2-800x533.jpg\" alt=\"Dorothy Reeves, 79, helps feed her husband, Levi, who has Lewy body dementia. Reeves, a former schoolteacher, initially declined brain donation but later agreed — for both her and her husband.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-2.jpg 1170w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Dorothy Reeves, 79, helps feed her husband, Levi, who has Lewy body dementia. Reeves, a former schoolteacher, initially declined brain donation but later agreed — for both her and her husband. \u003ccite>(Anna Gorman/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>The Knowledge Gap\u003c/strong>\u003c/p>\n\u003cp>The precise explanations for the disparities among blacks and whites are unknown. Until recently, most of our understanding of the pathology of dementia was largely based on studies of white patients.\u003c/p>\n\u003cp>“We have a real knowledge gap in accurately knowing if dementia is different in minorities as compared to whites,” said John Olichney, a neurologist and clinical director of the Alzheimer’s Disease Center at the University of California-Davis.\u003c/p>\n\u003cp>Scientists say blacks’ disproportionate rates of dementia may be related in part to the prevalence of disorders that raise the risk of vascular disease: diabetes and hypertension, for instance. Socioeconomic factors such as higher rates of poverty and lower levels of education also seem to play a significant role, according to \u003ca href=\"http://www.bmj.com/content/347/bmj.f7051\" target=\"_blank\" rel=\"noopener noreferrer\">research\u003c/a> led by the University of California-San Francisco.\u003c/p>\n\u003cp>Despite advances in imaging technology that allows researchers to peer into the brains of live patients, studying the organ after death is crucial to a deeper understanding of the causes and progression of disease and to developing drug treatments, Olichney said.\u003c/p>\n\u003cp>The challenge is getting enough brains from different populations to study. It’s not just a matter of assuring potential donors that Tuskegee and other ethical debacles are in the past. To gain trust, Alzheimer’s research facilities such as UC-Davis and Rush University are also trying to diversify their staffs, collaborate with community leaders and study religious and cultural beliefs on brain donation.\u003c/p>\n\u003cp>For example, some African-Americans don’t want their brain separated from their body when they are buried, said Stephanie Monroe, director of African Americans Against Alzheimer’s, which is engaged in various efforts to educate people about the disease and its effects.\u003c/p>\n\u003cp>“Many people believe in ashes to ashes and dust to dust,” she said.\u003c/p>\n\u003cp>\u003cstrong>A Changing Mindset\u003c/strong>\u003c/p>\n\u003cp>Alzheimer’s researchers at UC-Davis recognized about 15 years ago that they needed a more representative slice of the population, especially in diverse Northern California. At the time, centers around the country were mostly studying well-educated, white people who volunteered, Olichney said.\u003c/p>\n\u003cp>So they started reaching out to both the African-American and Latino communities. “That was a real change in our mindset,” he said.\u003c/p>\n\u003cp>Today, nearly 400 patients, including about 70 African-Americans, are enrolled in its longitudinal study of the progression of dementia, and they come in yearly for memory evaluations and other tests. Of the study participants, about 270 have agreed to donate their brains after death, more than 40 of them African-American.\u003c/p>\n\u003cp>At the Rush Alzheimer’s Disease Center, doctors started following a cohort of African-Americans in 2004 and, some seven years later, began to seek brain donation for the study. Close to 500 African-Americans have signed up to donate after death, and 72 brains already have been donated, Barnes said.\u003c/p>\n\u003cp>Though she is pleased with the high rate of commitment, she noted that more works needs to be done. In another study, about 3,100 white participants agreed to brain donation, with 1,400 already donated. Recruiting African-Americans “takes a lot of effort and a lot of work,” she said. “Every year, we bring it up again and revisit it with those who are reluctant. But if someone is really firm, we don’t push the subject.”\u003c/p>\n\u003cp>Research on the donated brains has led to intriguing findings. One Rush study, published in 2015, found that blacks with Alzheimer’s disease were more likely than whites to have other disorders, such as Lewy body dementia. Twice as many blacks with Alzheimer’s as whites with the disease also had Lewy body dementia, in which protein deposits build up in nerve cells, according to the study. Blacks with dementia also had more severe disease of the arteries, the \u003ca href=\"http://europepmc.org/articles/pmc4540250\">study\u003c/a> found.\u003c/p>\n\u003cp>The number of blacks studied was relatively small — 41 compared with 81 whites — yet its findings were potentially important. That’s because the presence of other diseases in the brain means blacks may not respond as white patients do to drugs aimed specifically at Alzheimer’s.\u003c/p>\n\u003cp>Even for experienced research institutions, getting people to participate in donation remains complicated — in part, because families don’t necessarily agree about it among themselves.\u003c/p>\n\u003cfigure id=\"attachment_360755\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-360755\" src=\"https://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2017/08/brain-donation-4-800x533.jpg\" alt=\"Andrea Gourdine holds a photo of her mother, Gladys Brown, who died in 2012 after being diagnosed with Alzheimer’s. Brown donated her brain to the University of California-Davis, for research.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2017/08/brain-donation-4.jpg 1170w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Andrea Gourdine holds a photo of her mother, Gladys Brown, who died in 2012 after being diagnosed with Alzheimer’s. Brown donated her brain to the University of California-Davis, for research. \u003ccite>(Anna Gorman/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Andrea Gourdine remembers clearly when her mother, Gladys Brown, started behaving oddly. Once, the elder woman forgot a stove burner was on and a dish exploded. Then she stopped bathing regularly. “And she was normally fastidious,” Gourdine said. “Something was really, really wrong.”\u003c/p>\n\u003cp>Brown enrolled in the research at UC-Davis, was diagnosed with Alzheimer’s in 2005 and soon after agreed to donate her brain. It won’t help me, Brown told researchers, but it could help others. She died in 2012, at 87.\u003c/p>\n\u003cp>Gourdine also signed up for the UC-Davis study and has consented to donate her brain. She does not have Alzheimer’s, but researchers are seeking brains of those without dementia for comparison.\u003c/p>\n\u003cp>She is aware of the history of medical abuse of African-Americans but says she doesn’t see any point in focusing on the past.\u003c/p>\n\u003cp>Gourdine’s sister, India Collins, disagrees with her sister and objected to her mother’s donation.\u003c/p>\n\u003cp>“I have problems with scientific research and I get very upset with scientific data and outcomes in general,” said Collins. She questions how helpful it is to African-Americans. “Why would you want to participate in their research if it does not benefit you?”\u003c/p>\n\u003cp>\u003cstrong>Expanding The Brain Trust\u003c/strong>\u003c/p>\n\u003cp>Gwen Gates, a recruiter and research coordinator at the UC-Davis center, goes to churches, health fairs and other events to build trust and develop deeper relationships among the university and minority communities. Patients and families want to know what scientists do with the brains. They worry about how relatives will react. They fear donation will interfere with funeral arrangements or their plans for an open casket.\u003c/p>\n\u003cp>She assures them it won’t. She explains that brain donations will help future generations, perhaps even in their own family.\u003c/p>\n\u003cp>Occasionally, families readily agree. Some adamantly refuse. For others, the decision is a process.\u003c/p>\n\u003cp>Dorothy Reeves declined brain donation initially but agreed to sign up herself and Levi, 81, for observational studies. Then she saw what the disease could do. Her husband, who has Lewy body dementia, went under a table one day to get a magazine and couldn’t find his way out. He forgot her name and those of his children.\u003c/p>\n\u003cp>She thought about all the other people like Levi.\u003c/p>\n\u003cp>“It affects people in ways you can’t imagine — regardless of your race,” she said. “It’s almost unbearable.”\u003c/p>\n\u003cp>Soon the researchers had their answer. Yes, she would agree to donation — for both of them.\u003c/p>\n\u003cp>\u003cem>KHN’s coverage in California is funded in part by \u003ca href=\"http://www.blueshieldcafoundation.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Blue Shield of California Foundation\u003c/a>.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://www.kaiserhealthnews.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Kaiser Health News\u003c/a> (KHN) is a national health policy news service. It is an editorially independent program of the \u003ca href=\"http://www.kff.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Henry J. Kaiser Family Foundation\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/stateofhealth/360752/lag-in-brain-donation-hampers-understanding-of-dementia-in-blacks","authors":["byline_stateofhealth_360752"],"categories":["stateofhealth_11","stateofhealth_12","stateofhealth_2746"],"tags":["stateofhealth_2902","stateofhealth_2970","stateofhealth_2930","stateofhealth_2808","stateofhealth_2519"],"affiliates":["stateofhealth_3007"],"featImg":"stateofhealth_360753","label":"stateofhealth_3007"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. 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But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. 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On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. 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For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us","airtime":"SUN 2pm-3pm, MON 12am-1am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/onTheMedia.png","officialWebsiteLink":"https://www.wnycstudios.org/shows/otm","meta":{"site":"news","source":"wnyc"},"link":"/radio/program/on-the-media","subscribe":{"apple":"https://itunes.apple.com/us/podcast/on-the-media/id73330715?mt=2","tuneIn":"https://tunein.com/radio/On-the-Media-p69/","rss":"http://feeds.wnyc.org/onthemedia"}},"our-body-politic":{"id":"our-body-politic","title":"Our Body Politic","info":"Presented by KQED, KCRW and KPCC, and created and hosted by award-winning journalist Farai Chideya, Our Body Politic is unapologetically centered on reporting on not just how women of color experience the major political events of today, but how they’re impacting those very issues.","airtime":"SAT 6pm-7pm, SUN 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Our-Body-Politic-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://our-body-politic.simplecast.com/","meta":{"site":"news","source":"kcrw"},"link":"/radio/program/our-body-politic","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/our-body-politic/id1533069868","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5zaW1wbGVjYXN0LmNvbS9feGFQaHMxcw","spotify":"https://open.spotify.com/show/4ApAiLT1kV153TttWAmqmc","rss":"https://feeds.simplecast.com/_xaPhs1s","tuneIn":"https://tunein.com/podcasts/News--Politics-Podcasts/Our-Body-Politic-p1369211/"}},"pbs-newshour":{"id":"pbs-newshour","title":"PBS NewsHour","info":"Analysis, background reports and updates from the PBS NewsHour putting today's news in context.","airtime":"MON-FRI 3pm-4pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/PBS-News-Hour-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.pbs.org/newshour/","meta":{"site":"news","source":"pbs"},"link":"/radio/program/pbs-newshour","subscribe":{"apple":"https://itunes.apple.com/us/podcast/pbs-newshour-full-show/id394432287?mt=2","tuneIn":"https://tunein.com/radio/PBS-NewsHour---Full-Show-p425698/","rss":"https://www.pbs.org/newshour/feeds/rss/podcasts/show"}},"perspectives":{"id":"perspectives","title":"Perspectives","tagline":"KQED's series of of daily listener commentaries since 1991","info":"KQED's series of of daily listener commentaries since 1991.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Perspectives-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/perspectives/","meta":{"site":"radio","source":"kqed","order":"15"},"link":"/perspectives","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/id73801135","npr":"https://www.npr.org/podcasts/432309616/perspectives","rss":"https://ww2.kqed.org/perspectives/category/perspectives/feed/","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvcGVyc3BlY3RpdmVzL2NhdGVnb3J5L3BlcnNwZWN0aXZlcy9mZWVkLw"}},"planet-money":{"id":"planet-money","title":"Planet Money","info":"The economy explained. 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The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.","airtime":"SAT 4pm-5pm","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/reveal300px.png","officialWebsiteLink":"https://www.revealnews.org/episodes/","meta":{"site":"news","source":"npr"},"link":"/radio/program/reveal","subscribe":{"apple":"https://itunes.apple.com/us/podcast/reveal/id886009669","tuneIn":"https://tunein.com/radio/Reveal-p679597/","rss":"http://feeds.revealradio.org/revealpodcast"}},"says-you":{"id":"says-you","title":"Says You!","info":"Public radio's game show of bluff and bluster, words and whimsy. 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