Summary of Strengthening Alzheimer s Research in Diverse Populations
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1 Summary of Strengthening Alzheimer s Research in Diverse Populations Nina Silverberg Presented in Salt Lake City Education Core meeting September 19, 2008
2 NIA s Health Disparities Toolbox
3 Strengthening Alzheimer s Research in Diverse Populations
4 Recruitment & Retention of Diverse Groups in AD Research: Approaches Used in Three Studies Peggye Dilworth Anderson Community Based Participatory Research CDC Health Marketing Community outreach Advertising (print, word of mouth, radio) Paid recruiters/trainers Personal sales
5 The Marketing Mix: the Four Ps Product: the goods, services, or ideas provided Marketing Mix Price: the cost incurred to participate in a study, including any barriers that must be overcome Place: the locations where the recruitment and the study take place Promotion: the media used to recruit participants
6 Recruitment for Genetic Studies on AD Goldie Byrd Consent surrogate Intergenerational survey Knowledge of Tuskegee did NOT play a role Older people participate more often >50% in all groups WILLING to participate Look at average income/edu for area tailor message Bring finance people to health fair
7 What African Americans want to know What s happening in their brain? Am I going to get it? How do I get help? Where is mom s DNA going? Can you test me? Will this (AD) break the family? (financially)
8 The Links: Role of Community Organizations in AD Recruitment Roslyn Fitch
9 Recruitment for AD Studies: An Alzheimer s Association Chapter Perspective Edie Yau San Francisco, Chinese community Alz. Assoc recruitment initiative dispel myths about clinical study participation Physicians Media Grass roots Created task force Clinicians, geriatricians, general medicine AA experts, AD researchers
10 Edie Yau (cont) Pitfalls Studies do not allow for limited English proficiency participants FDA, pharma, NIH Fulfillment, what can we offer? Diversity of ads and brochures marketing group created different brochures Community opinions Cognitive decline is normal Research could be harmful Label has a negative connotation
11 Education and Literacy Jennifer Manly Deconstructing race and education effects on cognitive performance Lifetime experience Klineberg, 1935 examined test data from World War I recruits that had previously been used as proof of intellectual inferiority of African Americans and immigrants (Brigham, 1923; Pintner, 1931), demonstrated that African American recruits educated in Northern states obtained higher scores on the Army Alpha and Beta tests than did White recruits born and raised in Southern states. Todd & Wolpin (economists, U Penn) cognitive achievement: home, school, racial test score gap State schooling laws, compulsory attendance Literacy or local info on schools (such as student: teacher ratio) better proxy than yrs of education
12 Bilingualism: Effects on Assessment and Cognitive Status Ellen Bialystok 1. What is bilingualism? (not categorical; prevalent) 2. Consequences of bilingualism Verbal disadvantages (smaller vocab, more TOTs) Cognitive advantages (executive fxn) 3. Protection against cognitive decline? 4. Assessing bilingualism
13
14 Group N Years Duration Years Education MMSE Onset Age Monolingual (3.2) 12.4 (3.8) 21.3 (6.4) 71.4 (9.6) Bilingual (3.1) 10.8 (4.1) 20.1 (7.1) 75.5 (8.5)
15 Onset of Symptoms and Degree of Bilingualism
16 New paper coming out Neuropsychological, Cognitive, and Theoretical Considerations for Evaluation of Bilingual Individuals Monica Rivera Mindt & Alyssa Arentoft & Kaori Kubo Germano & Erica D Aquila & Diane Scheiner & Maria Pizzirusso & Tiffany C. Sandoval & Tamar H. Gollan Received: 29 July 2008 / Accepted: 31 July 2008
17 Brain Autopsy John Morris Clinically relevant findings in up to 1/3 of autopsies 40% undecided Y (43%) advance medical knowledge, establish correct cause N (17%) fear of disfigurement, suffered enough Barriers Physician discomfort Attitudes of pts, families Value Necessary for AD dx confirm (ex. ADNI autopsy case DLB) Obtain tissue to understanding of disease mechanisms
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