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LetterCORRESPONDENCE

Raising Awareness of Alzheimer’s Disease and Dementia in Native Americans in North Carolina

Kathleen A. Welsh-Bohmer, Goldie Smith Byrd, Rachel Dewees, Andrea C. Bozoki, Patrick M. Martin, Brenda Plassman and S. Russ Price
North Carolina Medical Journal January 2022, 83 (1) 77-78; DOI: https://doi.org/10.18043/ncm.83.1.77
Kathleen A. Welsh-Bohmer
Director, Alzheimer’s Disease Research Center and professor, Psychiatry and Behavioral Sciences and Neurology, Duke University School of Medicine, Durham, North Carolina.
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  • For correspondence: Kathleen.welshbohmer@duke.edu
Goldie Smith Byrd
Professor, Social Sciences and Health Policy, Wake Forest School of Medicine, Winston-Salem, North Carolina.
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Rachel Dewees
Operations coordinator, North Carolina Registry for Brain Health, Duke University, Durham, North Carolina.
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Andrea C. Bozoki
Outreach and engagement core leader, Duke-UNC Alzheimer’s Disease Research Center, Durham, North Carolina and division chief and professor, Memory and Cognitive Disorders, Department of Neurology, UNC School of Medicine, Chapel Hill, North Carolina.
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Patrick M. Martin
Interim director, Center for Outreach in Alzheimer’s, Aging and Community Health, North Carolina Agricultural and Technical State University, Greensboro, North Carolina.
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Brenda Plassman
Professor, Psychiatry and Behavioral Sciences, Department of Neurology, Duke University School of Medicine, Durham, North Carolina.
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S. Russ Price
Associate dean, Research and Graduate Studies, ECU Brody School of Medicine, Greenville, North Carolina.
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To the Editor—Recent approval of a disease-modifying therapy for Alzheimer’s disease (AD) raises public hopes that other therapeutics may be on the horizon to treat this devastating condition affecting nearly 6 million Americans, including over 180,000 North Carolinians [1]. We are encouraged because at long last we have a drug that can alter the underlying pathology of the illness; however, there are many unanswered questions, particularly when considering whether these treatments will have a meaningful impact on groups underrepresented in clinical trials.

Clinical trial populations are by design comprised of individuals without significant medical comorbidities. Participants are typically of higher socioeconomic status and predominantly non-Hispanic Whites (NHW). Heterogeneity in treatment response occurs across many therapeutic areas depending on an individual’s underlying physiology, medical comorbidities, lifestyle factors, and possibly genetics [2, 3]. The lack of diversity in AD trial populations means that comparatively little is known about drug efficacy in underrepresented groups. This situation is of particular concern for American Indian populations already facing health disparities and a higher prevalence of conditions that make them more vulnerable to cognitive disorders of later adulthood [4]. Compared to their NHW counterparts, American Indians have disproportionately high rates of cardiovascular disease, diabetes, hypertension, and obesity [5], all of which are risk factors for stroke and late-life cognitive disorders [6].

Work across North Carolina is beginning to increase awareness of AD and related disorders in American Indian communities [7–9]. The North Carolina Registry for Brain Health is a state-sponsored collaborative effort across five academic partners (Duke University, Wake Forest University, UNC-Chapel Hill, NC A&T State University, and East Carolina University) to increase awareness and access to brain health research in underrepresented communities. Registry participants receive information on new developments related to improving brain health, resources for those living with dementias, and opportunities to get involved in research. Signing up for the registry does not commit one to a study, but instead provides a way to get regular updates about brain health research in North Carolina and ways to get involved.

We encourage all adults in North Carolina to visit the registry site and consider joining (ncbrainhealth.org). Our message is simple: By being informed and getting involved in brain health research, we can increase the representativeness of studies to better reflect the communities most affected by dementias and ensure that new therapies are better designed to meet the needs of all.

Acknowledgments

Disclosure of interests. No interests were disclosed.

  • © 2022 by the North Carolina Institute of Medicine and The Duke Endowment. All rights reserved.

References

  1. 1.↵
    2021 Alzheimer’s disease facts and figures. Alzheimers Dement. 2021;17(3):327–406. doi: 10.1002/alz.12328
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    1. Greenfield S,
    2. Kravitz R,
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    Heterogeneity of treatment effects: implications for guidelines, payment, and quality assessment. Am J Med. 2007;120(suppl 4A):S3–S9. doi: 10.1016/j.amjmed.2007.02.002
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    1. Cummings J,
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    3. Scheltens P.
    The “rights” of precision drug development for Alzheimer’s disease. Alz Res Ther. 2019;11(1):76. doi: 10.1186/s13195-019-0529-5
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    1. Sommerfeld DH,
    2. Jaramillo ET,
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    Health care access and utilization for American Indian elders: a concept-mapping study. J Gerontol B Psychol Sci Soc Sci. 2021;76(1):141–151. doi: 10.1093/geronb/gbz112.
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    1. Veazie M,
    2. Ayala C,
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    4. Dai S,
    5. Henderson JA,
    6. Cho P.
    Trends and disparities in heart disease mortality among American Indians/Alaska Natives, 1990–2009. Am J Public Health. 2014;104(Suppl 3):S359–S367. doi: 10.2105/AJPH.2013.301715
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  6. 6.↵
    1. Gottesman RF,
    2. Albert MS,
    3. Alonso A, et al.
    Associations between midlife vascular risk factors and 25-year incident dementia in the Atherosclerosis Risk in Communities (ARIC) cohort. JAMA Neurol. 2017;74(10):1246–1254. doi: 10.1001/jamaneurol.2017.1658
    OpenUrlCrossRefPubMed
  7. 7.↵
    1. Winchester BS.
    Dementia in Indian Country. Indian Health Service (IHS) Blog. Published November 21, 2018. Accessed November 24, 2021. https://www.ihs.gov/newsroom/ihs-blog/november2018/dementia-in-indian-country/
  8. 8.
    1. North Carolina American Indian Health Board, Wake Forest School of Medicine, UNC School of Medicine
    . Memory Loss and Alzheimer’s Disease in Native People. Accessed November 24, 2021. https://alz.org/media/Documents/Memory-Loss-and-Alzheimer-s-Disease-in-Native-People.pdf
  9. 9.↵
    1. Sticht Center for Healthy Aging and Alzheimer’s Prevention, Wake Forest School of Medicine Alzheimer’s Disease Research Center
    . Still Here Documentary Video. National Institute on Aging. Published December 28, 2018. Accessed November 24, 2021. https://www.nia.nih.gov/research/alzheimers-dementia-outreach-recruitment-engagement-resources/still-here-documentary-video
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Raising Awareness of Alzheimer’s Disease and Dementia in Native Americans in North Carolina
Kathleen A. Welsh-Bohmer, Goldie Smith Byrd, Rachel Dewees, Andrea C. Bozoki, Patrick M. Martin, Brenda Plassman, S. Russ Price
North Carolina Medical Journal Jan 2022, 83 (1) 77-78; DOI: 10.18043/ncm.83.1.77

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Raising Awareness of Alzheimer’s Disease and Dementia in Native Americans in North Carolina
Kathleen A. Welsh-Bohmer, Goldie Smith Byrd, Rachel Dewees, Andrea C. Bozoki, Patrick M. Martin, Brenda Plassman, S. Russ Price
North Carolina Medical Journal Jan 2022, 83 (1) 77-78; DOI: 10.18043/ncm.83.1.77
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