Skip to main content
AAN.com

Abstract

Background and Objectives

Rapid developments in Alzheimer disease (AD) biomarker research suggest that predictive testing may become widely available. To ensure equal access to AD predictive testing, it is important to understand factors that affect testing interest. Discrimination may influence attitudes toward AD testing, particularly among racially and ethnically minoritized populations, because of structural racism in health care systems. This study examined whether everyday or lifetime discrimination experiences shape interest in AD predictive testing.

Methods

In the 2010 and 2012 biennial Health and Retirement Study waves, respondents were randomly selected to complete questions on interest in receiving free testing that could determine whether they would develop AD in the future. The exposures were everyday discrimination (6 items) and lifetime discrimination (7 items); both were transformed into a binary variable. Logistic regression models predicting interest in AD testing were controlled for deciles of propensity scores for each discrimination measure. Odds ratios were re-expressed as risk differences (RDs).

Results

Our analytic sample included 1,499 respondents. The mean age was 67 (SD = 10.2) years, 57.4% were women, 65.7% were White, and 80% endorsed interest in AD predictive testing. Most of the participants (54.7%) experienced everyday discrimination in at least one domain; 24.1% experienced major lifetime discrimination in at least one domain. Those interested in predictive testing were younger (66 vs 70 years) and more likely to be Black (20% vs 15%) or Latinx (14% vs 8%) than participants uninterested in testing. The probability of wanting an AD test was not associated with discrimination for Black (RD everyday discrimination = −0.026; 95% CI [−0.081 to 0.029]; RD lifetime discrimination = −0.012; 95% CI [−0.085 to 0.063]) or Latinx (RD everyday discrimination = −0.023, 95% CI [−0.082 to 0.039]; RD lifetime discrimination = −0.011; 95% CI [−0.087 to 0.064]) participants.

Discussion

Despite historical and contemporary experiences of discrimination, Black and Latinx individuals express interest in AD testing. However, Black and Latinx individuals remain underrepresented in AD research, including research on AD testing. Interest in personalized information about dementia risk may be a pathway to enhance their inclusion in research and clinical trials.

Get full access to this article

View all available purchase options and get full access to this article.

References

1.
Lee S, Kim D, Lee H. Examine race/ethnicity disparities in perception, intention, and screening of dementia in a community setting: scoping review. Int J Environ Res Public Health. 2022;19(14):8865.
2.
Lin PJ, Daly AT, Olchanski N, et al. Dementia diagnosis disparities by race and ethnicity. Med Care. 2021;59(8):679-686.
3.
Cooper C, Tandy AR, Balamurali TBS, Livingston G. A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. Am J Geriatr Psychiatry. 2010;18(3):193-203.
4.
Livney MG, Clark CM, Karlawish JH, et al. Ethnoracial differences in the clinical characteristics of Alzheimer's disease at initial presentation at an urban Alzheimer's disease center. Am J Geriatr Psychiatry. 2011;19(5):430-439.
5.
Centers for Disease Control and Prevention, Alzheimer’s Association. Healthy Brain Initiative, State and Local Public Health Partnerships to Address Dementia: The 2018–2023 Road Map; 2018. cdc.gov/aging/pdf/2018-2023-Road-Map-508.pdf
6.
Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging‐Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7(3):280-292.
7.
Chao S, Roberts JS, Marteau TM, Silliman R, Cupples LA, Green RC. Health behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL Study. Alzheimer Dis Assoc Disord. 2008;22(1):94-97.
8.
Cullen NC, Leuzy A, Palmqvist S, et al. Individualized prognosis of cognitive decline and dementia in mild cognitive impairment based on plasma biomarker combinations. Nat Aging. 2020;1(1):114-123.
9.
Largent EA, Wexler A, Karlawish J. The future is P-tau-anticipating direct-to-consumer Alzheimer disease blood tests. JAMA Neurol. 2021;78(4):379-380.
10.
Gonzalez-Ortiz F, Turton M, Kac PR, et al. Brain-derived tau: a novel blood-based biomarker for Alzheimer's disease-type neurodegeneration. Brain J Neurol. 2023;146(3):1152-1165.
11.
Mayeda ER, Glymour MM, Quesenberry CP, Whitmer RA. Inequalities in dementia incidence between six racial and ethnic groups over 14 years. Alzheimers Dement. 2016;12(3):216-224.
12.
Manly JJ, Jones RN, Langa KM, et al. Estimating the prevalence of dementia and mild cognitive impairment in the US: the 2016 health and retirement study harmonized cognitive assessment protocol project. JAMA Neurol. 2022;79(12):1242-1249.
13.
Nelson A. Unequal treatment: confronting racial and ethnic disparities in health care. J Natl Med Assoc. 2002;94(8):666-668.
14.
Jaiswal J, Halkitis PN. Towards a more inclusive and dynamic understanding of medical mistrust informed by science. Behav Med. 2019;45(2):79-85.
15.
Bazargan M, Cobb S, Assari S. Discrimination and medical mistrust in a racially and ethnically diverse sample of California adults. Ann Fam Med. 2021;19(1):4-15.
16.
Hammond WP, Siddiqi AA. Social determinants of medical mistrust among African-American men. In: Social Determinants of Health Among African-American Men. Jossey-Bass/Wiley; 2013:135-160.
17.
Nguyen TT, Vable AM, Glymour MM, Nuru-Jeter A. Trends for reported discrimination in health care in a national sample of older adults with chronic conditions. J Gen Intern Med. 2018;33(3):291-297.
18.
2023 Alzheimer's disease facts and figures. Alzheimers Dement. 2023;19(4):1598-1695.
19.
Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci. 2016;113(16):4296-4301.
20.
Vila-Castelar C, Fox-Fuller JT, Guzmán-Vélez E, Schoemaker D, Quiroz YT. A cultural approach to dementia—insights from US Latino and other minoritized groups. Nat Rev Neurol. 2022;18(5):307-314.
21.
Gilmore‐Bykovskyi AL, Jin Y, Gleason C, et al. Recruitment and retention of underrepresented populations in Alzheimer's disease research: a systematic review. Alzheimers Dement (N Y). 2019;5(1):751-770.
22.
Williams DR. Measuring discrimination resource. Psychol. 1997;2(3):335-351.
23.
Carter RT, Lau MY, Johnson V, Kirkinis K. Racial discrimination and health outcomes among racial/ethnic minorities: a meta-analytic review. J Multicult Couns Dev. 2017;45(4):232-259.
24.
Krieger N. Discrimination and health inequities. Int J Health Serv. 2014;44(4):643-710.
25.
Roberts JS, Barber M, Brown TM, et al. Who seeks genetic susceptibility testing for Alzheimer's disease? Findings from a multisite, randomized clinical trial. Genet Med. 2004;6(4):197-203.
26.
Roberts JS. Anticipating response to predictive genetic testing for Alzheimer’sdisease: a survey of first-degree relatives. Gerontologist. 2000;40(1):43-52.
27.
Neumann PJ, Hammitt JK, Mueller C, et al. Public attitudes about genetic testing for Alzheimer's disease. Health Aff (Millwood). 2001;20(5):252-264.
28.
Juster FT, Suzman R. An overview of the health and retirement study. J Hum Resour. 1995;30:S7.
29.
Williams DR, Yan Yu, Jackson JS, Anderson NB. Racial differences in physical and mental health: socio-economic status, stress and discrimination. J Health Psychol. 1997;2(3):335-351.
30.
Smith J, Ryan L, Fisher GG, Sonnega A, Weir D. Psychosocial and Lifestyle Questionnaire 2006-2016: Document Report Core Section LB; 2017.
31.
Dubois B, Hampel H, Feldman HH, et al. Preclinical Alzheimer's disease: definition, natural history, and diagnostic criteria. Alzheimers Dement. 2016;12(3):292-323.
32.
Van Maurik IS, Vos SJ, Bos I, et al. Biomarker-based prognosis for people with mild cognitive impairment (ABIDE): a modelling study. Lancet Neurol. 2019;18(11):1034-1044.
33.
Ketchum FB, Chin NA, Grill J, et al. Moving beyond disclosure: stages of care in preclinical Alzheimer's disease biomarker testing. Alzheimers Dement. 2022;18(10):1969-1979.
34.
Evans DA, Hebert LE, Beckett LA, et al. Education and other measures of socioeconomic status and risk of incident Alzheimer Disease in a defined population of older persons. Arch Neurol. 1997;54(11):1399-1405.
35.
Wang AY, Hu HY, Ou YN, et al. Socioeconomic status and risks of cognitive impairment and dementia: a systematic review and meta-analysis of 39 prospective studies. J Prev Alzheimers Dis. 2023;10(1):83-94.
36.
Meeker KL, Wisch JK, Hudson D, et al. Socioeconomic status mediates racial differences seen using the AT(N) framework. Ann Neurol. 2021;89(2):254-265.
37.
Kessler EM, Bowen CE, Baer M, Froelich L, Wahl HW. Dementia worry: a psychological examination of an unexplored phenomenon. Eur J Ageing. 2012;9(4):275-284.
38.
MetLife Foundation. Americans Fear Alzheimer's More than Heart Disease, Diabetes or Stroke, but Few Prepare. 2006.
39.
MetLife Foundation. What America Thinks. The MetLife Foundation Alzheimer’s Survey. 2011.
40.
Wikler EM, Blendon RJ, Benson JM. Would you want to know? Public attitudes on early diagnostic testing for Alzheimer's disease. Alzheimers Res Ther. 2013;5(5):43.
41.
Sheffrin M, Stijacic Cenzer I, Steinman MA. Desire for predictive testing for Alzheimer's disease and impact on advance care planning: a cross-sectional study. Alzheimers Res Ther. 2016;8(1):55.
42.
Erickson CM, Chin NA, Ketchum FB, et al. Predictors of willingness to enroll in hypothetical Alzheimer disease biomarker studies that disclose personal results. Alzheimer Dis Assoc Disord. 2022;36(2):125-132.
43.
Fargo KN, Carrillo MC, Weiner MW, Potter WZ, Khachaturian Z. The crisis in recruitment for clinical trials in Alzheimer's and dementia: an action plan for solutions. Alzheimers Dement. 2016;12(11):1113-1115.
44.
Kennedy RE, Cutter GR, Wang G, Schneider LS. Challenging assumptions about African American participation in Alzheimer disease trials. Am J Geriatr Psychiatry. 2017;25(10):1150-1159.
45.
Vyas MV, Raval PK, Watt JA, Tang-Wai DF. Representation of ethnic groups in dementia trials: systematic review and meta-analysis. J Neurol Sci. 2018;394:107-111.
46.
Shaw AR, Perales-Puchalt J, Moore T, et al. Recruitment of older African Americans in Alzheimer's disease clinical trials using a community education approach. J Prev Alzheimers Dis. 2022;9(4):672-678.
47.
Bastos JL, Harnois CE. Does the Everyday Discrimination Scale generate meaningful cross-group estimates? A psychometric evaluation. Soc Sci Med. 2020;265:113321.

Information & Authors

Information

Published In

Neurology®
Volume 102Number 4February 27, 2024
PubMed: 38266219

Publication History

Received: June 27, 2023
Accepted: October 13, 2023
Published online: January 24, 2024
Published in print: February 27, 2024

Permissions

Request permissions for this article.

Disclosure

The authors report no relevant disclosures. Go to Neurology.org/N for full disclosures.

Study Funding

T.G. Hill-Jarrett: NIA T32AG078115; M.D. Thomas: NIA K99AG076973; M.H. Kim: NIA K99 K99AG078405; K.D. Sims: NIA T32AG049663, S. Miramontes: NIGMS T32GM067547; M.M. Glymour, P.T. Buto, M. Choi: NIA R01AG057869.

Authors

Affiliations & Disclosures

Tanisha G. Hill-Jarrett, PhD https://orcid.org/0000-0002-6924-0702
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
Neuropsychology consultant - Cogstate
Research Support:
1.
NONE
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
NONE
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
NONE
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
Academic entities - National Institute of General Medical Sciences (NIGMS) (T32GM067547-20): This research is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or NIA
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
Marilyn D. Thomas, PhD, MPH https://orcid.org/0000-0003-3245-6363
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
NONE
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
NONE
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
Governmental - National Institute on Aging (1K99AG078405-01): Career development grant
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
NONE
Research Support:
1.
Academic - National Institute of Aging (T32AG049663): This training program for research on aging and chronic disease emphasizes integration of evidence from populations to translational applications in practice and policy. Training focuses on chronic diseases and aging, including Alzheimer's disease and related disorders, cancer, musculoskeletal and cardiometabolic disorders
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE
From the Department of Neurology (T.G.H.-.J), Memory and Aging Center; Department of Epidemiology and Biostatistics (M.C., P.T.B.); Bakar Computational Health Sciences Institute (S.M.); Department of Psychiatry and Behavioral Sciences (M.D.T.), Weill Institute for Neurosciences; Department of Epidemiology and Biostatistics (Y.Y., K.D.S., M.M.G.); and Institute for Health Policy Studies (M.H.K.), University of California San Francisco.
Disclosure
Financial Disclosure:
1.
Royalties - Oxford University Press
Uncompensated Journal editor service - American Journal of Epidemiology
Uncompensated Associated Editor Service - Journal of Causal Inference
Research Support:
1.
Governmental entities - NIH/NIA: Multiple research grants
Foundation - Robert Wood Johnson Foundation: funding for Evidence for Action Program
Stock, Stock Options & Royalties:
1.
NONE
Legal Proceedings:
1.
NONE

Notes

Correspondence Dr. Hill-Jarrett [email protected]
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Submitted and externally peer reviewed. The handling editor was Associate Editor Linda A. Hershey, MD, PhD, FAAN.

Metrics & Citations

Metrics

Citation information is sourced from Crossref Cited-by service.

Citations

Download Citations

If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Select your manager software from the list below and click Download.

Cited By

View Options

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Personal login Institutional Login
Purchase Options

The neurology.org payment platform is currently offline. Our technical team is working as quickly as possible to restore service.

If you need immediate support or to place an order, please call or email customer service:

  • 1-800-638-3030 for U.S. customers - 8:30 - 7 pm ET (M-F)
  • 1-301-223-2300 for customers outside the U.S. - 8:30 - 7 pm ET (M-F)
  • [email protected]

We appreciate your patience during this time and apologize for any inconvenience.

View options

PDF and All Supplements

Download PDF and Supplementary Material

Short Form

Short Form

Full Text

View Full Text

Full Text HTML

View Full Text HTML

Figures

Tables

Media

Share

Share

Share article link

Share