There is a critical need to increase Latino participation in research on Alzheimer's disease and related disorders (ADRD). Applying principles of community-based participatory research, we convened a community advisory board (CAB) to identify barriers and recommend strategies to increase participation of older Latinos in a longitudinal observational research study of ADRD at the Shiley-Marcos Alzheimer's Disease Research Center. Six major barriers were identified and programmatic changes to overcome them were implemented. Changes resulted in a nearly three-fold increase in the number of Latino individuals recruited, with the proportion of all newly recruited participants who were Latino increasing from 12.2% to 57.4%. Newer Latino recruits were more representative of the elderly Latino population in San Diego County than those recruited pre-CAB and remained highly agreeable to blood draw and neuroimaging, though less so to lumbar puncture and autopsy. Results demonstrate the value of CAB involvement in enhancing diversity in ADRD research.
BilbreyA. C.HumberM. B.PloweyE. D.GarciaI.ChennapragadaL.DesaiK.RosenA.AskariN.Gallagher-ThompsonD. (2018). The impact of Latino values and cultural beliefs on brain donation: Results of a pilot study to develop culturally appropriate materials and methods to increase rates of brain donation in this under-studied patient group. Clinical Gerontologist, 41(3), 237–248. https://doi.org/10.1080/07317115.2017.1373178
2.
BoiseL.HintonL.RosenH. J.RuhlM. C.DodgeH.MattekN.AlbertM.DennyA.GrillJ. D.HughesT.LinglerJ. H.MorhardtD.ParfittF.Peterson-HazanS.PopV.RoseT.ShahR. C. (2017). Willingness to be a brain donor: A survey of research volunteers from 4 racial/ethnic groups. Alzheimer Disease and Associated Disorders, 31(2), 135–140. https://doi.org/10.1097/WAD.0000000000000174
3.
CanevelliM.BrunoG.GrandeG.QuarataF.RaganatoR.RemiddiF.VallettaM.ZaccariaV.VanacoreN.CesariM. (2019). Race reporting and disparities in clinical trials on Alzheimer’s disease: A systematic review. Neuroscience and Biobehavioral Review, 101, 122–128. https://doi.org/10.1016/j.neubiorev.2019.03.020
4.
FariasS. T.MungasD.HintonL.HaanM. (2011). Demographic, neuropsychological, and functional predictors of rate of longitudinal cognitive decline in Hispanic older adults. The American Journal of Geriatric Psychiatry, 19(5), 440–450. https://doi.org/10.1097/JGP.0b013e3181e9b9a5
5.
GelmanC. R. (2010). Learning from recruitment challenges: Barriers to diagnosis, treatment, and research participation for Latinos with symptoms of Alzheimer’s disease. Journal of Gerontology: Social Work, 53(1), 94–113. https://doi.org/10.1080/01634370903361847
6.
GeorgeS.DuranN.NorrisK. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104(2), e16–e31. https://doi.org/10.2105/AJPH.2013.301706
7.
Gilmore-BykovskyiA. L.JinY.GleasonC.Flowers-BentonS.BlockL. M.Dilworth-AndersonP.BarnesL. L.ShahM. N.ZuelsdorffM. (2019). Recruitment and retention of underrepresented populations in Alzheimer’s disease research: A systematic review. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 5, 751–770. https://doi.org/10.1016/j.trci.2019.09.018
8.
HowellJ. C.ParkerM. W.WattsK. D.KollhoffA.TsvetkovaD. Z.HuW. T. (2016). Research lumbar punctures among African Americans and Caucasians: Perception predicts experience. Frontiers in Aging Neuroscience, 8, Article 296. https://doi.org/10.3389/fnagi.2016.00296
9.
IsraelB. A.SchulzA. J.ParkerE. A., BeckerA. B., & Community-Campus Partnerships for Health. (2001). Community-based participatory research: Policy recommendations for promoting a partnership approach in health research. Education for Health: Change in Learning & Practice, 14(2), 182–197. https://doi.org/10.1080/13576280110051055
10.
ManlyJ. J.TangM.-X.SchupfN.SternY.VonsattelJ.-P. G.MayeuxR. (2008). Frequency and course of mild cognitive impairment in a multiethnic community. Annals of Neurology, 63(4), 494–506. https://doi.org/10.1002/ana.21326
11.
MarquezD. X.PerezA.JohnsonJ. K.JaldinM.PintoJ.KeiserS.TranT.MartinezP.GuerreroJ.PortacoloneE. (2022). Increasing engagement of Hispanics/Latinos in clinical trials on Alzheimer’s disease and related dementias. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 8(1), Article e12331. https://doi.org/10.1002/trc2.12331
12.
MatthewsK. A.XuW.GagliotiA. H.HoltJ. B.CroftJ. B.MackD.McGuireL. C. (2019). Racial and ethnic estimates of Alzheimer’s disease and related dementias in the United States (2015–2060) in adults aged ≥65 years. Alzheimer’s & Dementia, 15(1), 17–24. https://doi.org/10.1016/j.jalz.2018.06.3063
13.
MontoyaY.BalbimG. M.GloverC. M.MarquezD. X. (2021). “My parent’s body is sacred”: Perspectives from adult Latino children about brain donation for Alzheimer disease research. Alzheimer’s Disease and Associated Disorders, 35(1), 88–90. https://doi.org/10.1097/WAD.0000000000000377
14.
Morlett ParedesA.GuareñaL. A.StickelA. M.SchairerC. E.GonzálezH. M. (2023). To donate, or not to donate, that is the question: Latino insights into brain donation. Alzheimer’s & Dementia, 19(4), 1274–1280. https://doi.org/10.1002/alz.12755
Pena-GarciaA.RichardsR.RichardsM.CampbellC.MosleyH.AsperJ.EliacinJ.PolsinelliA.ApostolovaL.HendrieH.TackettA.ElliottC.Van HeidenS.GaoS.SaykinA.WangS., & IADRC CAB. (2023). Accelerating diversity in Alzheimer’s disease research by partnering with a community advisory board. Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 9(2), Article e12400. https://doi.org/10.1002/trc2.12400
17.
RajanK. B.WeuveJ.BarnesL. L.McAninchE. A.WilsonR. S.EvansD. A. (2021). Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020-2060). Alzheimer’s & Dementia, 17(12), 1966–1975. https://doi.org/10.1002/alz.12362
18.
RamirezM.TeresiJ. E.SilverS.HolmesD.GurlandB.LantiguaR. (2001). Cognitive assessment among minority elderly: Possible test bias. Journal of Mental Health and Aging, 7, 91–118.
19.
SmirnovD. S.AshtonN. J.BlennowK.ZetterbergH.SimrénJ.Lantero-RodriguezJ.KarikariT. K.HinikerA.RissmanR. A.SalmonD. P.GalaskoD. (2022). Plasma biomarkers for Alzheimer’s disease in relation to neuropathology and cognitive change. Acta Neuropathologica, 143(4), 487–503. https://doi.org/10.1007/s00401-022-02408-5
20.
SoriaJ. A.HuisaB. N.EdlandS. D.LitvanI.PeavyG. M.SalmonD. P.HansenL. A.GalaskoD. R.BrewerJ. B.GonzálezH. M.RissmanR. A. (2018). Clinical-neuropathological correlations of Alzheimer’s disease and related dementias in Latino volunteers. Journal of Alzheimer’s Disease, 66(4), 1539–1548. https://doi.org/10.3233/JAD-180789
21.
TsvetkovaD. Z.BergquistS. H.ParkerM. W.JarrettT. L.HowellJ. C.WattsK. D.KollhoffA.RobertsD. L.HuW. T. (2017). Fear and uncertainty do not influence reported willingness to undergo lumbar punctures in a U.S. multi-cultural cohort. Frontiers in Aging Neuroscience, 9, Article 22. https://doi.org/10.3389/fnagi.2017.00022
WeissbergerG. H.GollanT. H.BondiM. W.NationD. A.HansenL. A.GalaskoD.SalmonD. P. (2019). Neuropsychological deficit profiles, vascular risk factors, and neuropathological findings in Hispanic older adults with autopsy-confirmed Alzheimer’s disease. Journal of Alzheimer’s Disease, 67(1), 291–302. https://doi.org/10.3233/JAD-180351
24.
WuS.RodriguezF.JinH.VegaW. A. (2019). Latino and Alzheimer’s: Social determinants and personal factors contributing to disease risk. In VegaW.AngelJ.Gutiérrez RobledoL.MarkidesK. (Eds.), Contextualizing health and aging in the Americas (pp. 63–84). Springer. https://doi.org/10.1007/978-3-030-00584-9_4.
