Perspective on the “African American participation in Alzheimer disease research: Effective strategies” workshop, 2018

Denny, Andrea; Streitz, Marissa; Stock, Kristin; Balls-Berry, Joyce E.; Barnes, Lisa L.; Byrd, Goldie S.; Croff, Raina; Gao, Sujuan; Glover, Crystal M.; Hendrie, Hugh C.; Hu, William T.; Manly, Jennifer J.; Moulder, Krista L.; Stark, Susan; Thomas, Stephen B.; Whitmer, Rachel A.; Wong, Roger; Morris, John C.; Lingler, Jennifer H.

doi:10.1002/alz.12160

Cited by 29 publications

(50 citation statements)

References 58 publications

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“…There is a large body of evidence demonstrating low diversity in clinical trials and research, and in Alzheimer's research the participants are mostly older non‐Hispanic Whites 709–711 . Efforts to ensure greater diversity in Alzheimer's disease research and clinical trials must be accelerated.…”

Section: Special Report: Race Ethnicity and Alzheimer's In Americamentioning

confidence: 99%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

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This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the challenges of providing equitable health care for people with dementia in the United States. An estimated 6.2 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available, making Alzheimer's the sixth‐leading cause of death in the United States and the fifth‐leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated in 2020 by the COVID‐19 pandemic. More than 11 million family members and other unpaid caregivers provided an estimated 15.3 billion hours of care to people with Alzheimer's or other dementias in 2020. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $256.7 billion in 2020. Its costs, however, extend to family caregivers’ increased risk for emotional distress and negative mental and physical health outcomes — costs that have been aggravated by COVID‐19. Average per‐person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2021 for health care, long‐term care and hospice services for people age 65 and older with dementia are estimated to be $355 billion. Despite years of efforts to make health care more equitable in the United States, racial and ethnic disparities remain — both in terms of health disparities, which involve differences in the burden of illness, and health care disparities, which involve differences in the ability to use health care services. Blacks, Hispanics, Asian Americans and Native Americans continue to have a higher burden of illness and lower access to health care compared with Whites. Such disparities, which have become more apparent during COVID‐19, extend to dementia care. Surveys commissioned by the Alzheimer's Association recently shed new light on the role of discrimination in dementia care, the varying levels of trust between racial and ethnic groups in medical research, and the differences between groups in their levels of concern about and awareness of Alzheimer's disease. These findings emphasize the need to increase racial and ethnic diversity in both the dementia care workforce and in Alzheimer's clinical trials.

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Section: Special Report: Race Ethnicity and Alzheimer's In Americamentioning

confidence: 99%

2021 Alzheimer's disease facts and figures

2021

Alzheimer's & Dementia

1,778

849

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“…Furthermore, we will learn more about the disease if we enrol participants with different risk factors and life experiences, as opposed to continuing to enrol participants who are similar to those we have already studied. A sustained culturally sensitive outreach effort and ongoing community-wide education will be required to overcome the barriers that underlie low representation in research among African American individuals 71 . Such efforts will be essential for achieving successful recruitment and high rates of follow-up, and for encouraging participants to consent to invasive procedures such as, organ donation, lumbar puncture and PET that are often included in AD research.…”

Section: Strategies To Move Forwardmentioning

confidence: 99%

“…Fourth, recruitment and retention must be coupled with culturally sensitive community education that empowers people, providing not only factual knowledge about the disease but also healthy lifestyle recommendations to motivate brain health and wellness. Last, because diverse populations often have a high prevalence of other chronic health conditions beyond AD, providing ancillary services and incentives for participation can help sustain the long-term relationships that are important for longitudinal studies 71 , 72 .…”

Section: Strategies To Move Forwardmentioning

confidence: 99%

Alzheimer disease in African American individuals: increased incidence or not enough data?

Barnes

2021

Nat Rev Neurol

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Research on racial differences in Alzheimer disease (AD) dementia has increased in recent years. Older African American individuals bear a disproportionate burden of AD and cognitive impairment compared with non-Latino white individuals. Tremendous progress has been made over the past two decades in our understanding of the neurobiological substrates of AD. However, owing to well-documented challenges of study participant recruitment and a persistent lack of biological data in the African American population, knowledge of the drivers of these racial disparities has lagged behind. Therapeutic targets and effective interventions for AD are increasingly sought, but without a better understanding of the disease in African American individuals, any identified treatments and/or cures will evade this rapidly growing at-risk population. In this Perspective, I introduce three key obstacles to progress in understanding racial differences in AD: uncertainty about diagnostic criteria, disparate cross-sectional and longitudinal findings; and a dearth of neuropathological data. I also highlight evidence-informed strategies to move the field forward.

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“…8 In October 2018, more than 400 individuals from all ADRCs and St. Louis Af-rican American community members were part of the African American Participation in AD Research: Effective Strategies Conference. 9 The workshop summary notes that ADRCs have a unique opportunity to create a systematic effort to increase research participation in underrepresented groups, but the effort remains lacking.…”

Section: Nia-supported Alzheimer's Disease Research Centers and Clinimentioning

confidence: 99%

Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research

Elliott

2020

Ethn Dis

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The National Alzheimer’s Project Act identifies the effective treatment and prevention of Alzheimer's by 2025 as an urgent public health mission. This priority is reflected in the recent increases in public funding that is accelerating Alzheimer’s and related dementias research. Many drugs and clinical interventions are in rapid development, with the promising ones moving to clinical trials to be tested. There are currently more than 200 on-going clinical trials, seeking more than 270,000 participants, which will require screening of more than a million individuals. With the race to treatment, how inclusive will screenings be to ensure diversification of the citizens volunteering to become trial participants? Underrepresented groups are chronically under-enrolled in clinical research studies. This under-enrollment leads to conclusions about disease risk factors and processes without all the necessary data because the studies are not representative of all people and all life experiences. Ethn Dis. 2020;30(Suppl 2):705-708; doi:10.18865/ed.30.S2.705

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Perspective on the “African American participation in Alzheimer disease research: Effective strategies” workshop, 2018

Cited by 29 publications

References 58 publications

2021 Alzheimer's disease facts and figures

2021 Alzheimer's disease facts and figures

Alzheimer disease in African American individuals: increased incidence or not enough data?

Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer’s and Related Dementias Clinical Research

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