ASSISTANT SECRETARY FOR

PLANNING AND EVALUATION May 19, 2022

(@ ASPE ISSUE BRIEF

FEDERAL EFFORTS TO ADDRESS RACIAL AND ETHNIC DISPARITIES
IN ALZHEIMER'S DISEASE AND RELATED DEMENTIAS

DIRECTIVE

The National Alzheimer's Project Act (NAPA) requires "the inclusion of ethnic and racial populations at higher
risk for Alzheimer's or least likely to receive care, in clinical, research, and service efforts with the purpose of
decreasing health disparities in Alzheimer's". To meet this requirement, in 2020 the Advisory Council on
Alzheimer's Research, Care, and Services recommended that in order to advance health equity, work must be
done to address racial and ethnic disparities in Alzheimer's disease and related dementias (ADRD). As a starting
point, the Advisory Council tasked the U.S. Department of Health and Human Services (HHS) to develop a
report on federal initiatives taken to address such disparities. The Office of the Assistant Secretary for Planning
and Evaluation (ASPE), which coordinates the implementation of NAPA, developed the following issue brief
and inventory of federal efforts to address racial and ethnic disparities in dementia research, care, and
services.

BACKGROUND

In the United States, racial and ethnic minority groups such as Black, Hispanic, Native American, and Asian
adults have greater difficulty accessing ADRD services and supports than White adults. Black and Hispanic
older adults are burdened by a disproportionately high prevalence of ADRD, while Native American and Asian
adults have a lower likelihood of receiving a timely ADRD diagnosis.2?° Older Black adults are twice as likely,
and Hispanic adults are one and one-half times as likely, to have Alzheimer's disease (AD) compared to older
White adults.2* Some of these challenges may be attributable to disparities in the prevalence of risk factors
and chronic health conditions, and differences in health-related behaviors and socioeconomic status.' Native
American and Asian adults have lower rates of AD diagnosis; however, this may be due to underdiagnosis,
which is also common among Hispanic and Black adults.*?° While the reasons for disparities in ADRD and
health care more broadly are manifold and complex, some factors addressed in this brief include bias and
discrimination within the health care system, the lack of culturally competent care, and underrepresentation
of people from minority racial and ethnic groups in clinical trials.

Bias within the health care system can both create and amplify racial and ethnic disparities in ADRD.** The
negative impact of biases may be felt across the spectrum of care, but for ADRD bias can especially impede the
proper diagnosis of patients from minority racial and ethnic backgrounds, such as those who are Black or
Hispanic. Many of the common diagnostic tools currently in use may be less accurate for patients who are not
White, even after controlling for age, education, and socioeconomic status.' One example is the Mini-Mental
State Exam (MMSE), a brief paper-based test of cognitive function in older adults that evaluates orientation,
attention, memory, language, and visual-spatial skills.7> Studies have found measurement bias and differential
item functioning (DIF) in the MMSE, and higher false-positive ratios of cognitive impairment have been
observed for Black and Hispanic respondents compared to White respondents." DIF occurs when people from
different groups, such as people of different educational attainments, genders, or races or ethnicities, are not

 

May 2022 ISSUE BRIEF 1
equally likely to get questions and tasks correct despite having equal underlying ability." Discrimination refers
to differences in treatment due to bias, prejudice, stereotyping, and uncertain communication.*®

Discrimination and bias in health care have implications beyond diagnosing ADRD. Black, Hispanic, Asian, and
Native American older adults tend to report experiencing racial discrimination from dementia care providers at
a higher rate than White older adults; and they commonly report feeling like their provider does not listen to
them, acts as if they are unintelligent, or treats them with less courtesy or respect than others.?°
Discrimination in health care is linked to worse health outcomes among racial and ethnic minorities for
conditions that may increase risk of ADRD.'"7* For example, among patients with hypertension, a modifiable
risk factor for ADRD, Black individuals are less likely than White individuals to have their blood pressure
controlled.®

People of color often lack access to culturally competent care, which can affect the quality and quantity of care
they receive. The vast majority of Black, Hispanic, Native American, and Asian adults reported that having a
provider who could provide culturally competent care for ADRD was important, but they were not confident
such care was available.*° In addition, a recent survey found that Hispanic, Black, and Native Americans are
twice as likely as White Americans to report they would not see a doctor for thinking or memory problems,
further delaying or inhibiting a dementia diagnosis.° Both Hispanic and Black Americans are more likely than
White Americans to perceive that ADRD symptoms are a normal part of aging."°*1 Because of the lack of
culturally competent care, providers are not typically taught to recognize cultural differences in how patients
perceive and report symptoms of ADRD and the need to screen more proactively for ADRD among these
populations.

Racial and ethnic minority populations are also often underrepresented in clinical trials and research studies,
which in turn inform the approaches used to diagnose and treat ADRD. In some instances, it is the study design
that leads to underrepresentation. For example, racial and ethnic minority populations may in some cases be
excluded because they have higher rates of comorbid conditions that are exclusionary criteria from clinical
trials; those who are also non-native English speakers may be excluded if there are English fluency
requirements." Clinical trials may not be located in diverse communities and may not offer compensation
even though they require individuals to take time off of work in order to participate. In other instances, people
of color may choose not to participate in research trials because of distrust stemming from the long history of
unethical experimentation and abuse of clinical trial participants from racial and ethnic minority groups,
particularly Black Americans."° Lack of access to timely and adequate health care is thought to also contribute
to lower rates of participation in research by Black and Hispanic people: as a result of broader barriers to
health care access, both groups are typically diagnosed later in their dementia progression than non-Hispanic
White adults, making them ineligible for many clinical trials.

METHODS

To identify initiatives addressing racial and ethnic disparities in ADRD, ASPE requested that partner federal
agencies provide a summary of their efforts from 2011 to Spring 2021, aligning with the implementation of
NAPA. Agencies submitted examples of their work, including databases, research grants, direct service
provision, and public education opportunities. ASPE categorized these efforts into five topics that roughly align
with the Goals of the National Plan to Address Alzheimer's Disease: research, clinical care, long-term services
and supports (LTSS), public awareness, and risk reduction. The following agencies submitted responses:

Administration for Community Living (ACL)

Agency for Healthcare Research and Quality (AHRQ)
Centers for Disease Control and Prevention (CDC)
Centers for Medicare & Medicaid Services (CMS)

 

May 2022 ISSUE BRIEF 2
Indian Health Services (IHS)
Health Resources and Services Administration (HRSA)
® National Institutes of Health (NIH)
o National Institute on Aging (NIA)
o National Institute of Neurological Disorders and Stroke (NINDS)
® U.S. Department of Veterans Affairs (VA)

SUMMARY OF FINDINGS

This section summarizes the items agencies submitted based on category (research, clinical care, LTSS, public
awareness, and risk reduction). Though strictly delineated in this document, these categories and the
programs and interventions within them often overlap in the real world. For example, to better include diverse
populations in research, NIA and NINDS must
create and disseminate materials that educate
the public on the importance of clinical research
and how to participate in it. Public education is
also a key component of risk reduction efforts,
since people, communities, and systems need to
understand the connection between ADRD and
risk factors such as hypertension in order to best
modify their actions and interventions. In such
cases where overlap exists, ASPE included the
agency submission in the category that seemed
most relevant to the intervention or program.
For additional details about the following initiatives please see the Appendix of Agency Work to Address
Disparities, which is organized first by category and then by agency.

 

 
 
    
 
   
 
    
 

  

ie
Reduction

Education

Clinical
Care

 

 

 

Federal agencies' work on racial and ethnic disparities in ADRD research falls into three main categories:
intramural research identifying disparities within the populations they serve, work on improving recruitment of
racial and ethnic minorities in research, and funding of external research on disparities in ADRD. VA, CMS, NIA,
and NINDS all reported intramural research. For example, CMS has designed an interactive map, the Mapping
Medicare Disparities Tool, to identify geographic areas with greater health disparities between subgroups of
Medicare beneficiaries. VA Geriatric Research, Education, and Clinical Centers (GRECCs) explore race and
ethnicity in a variety of dementia-specific or dementia-relevant research, education, and/or clinical
demonstration projects. NIA has developed a National Strategy for Recruitment and Participation in
Alzheimer's and Related Dementias Clinical Research, which aims to improve recruitment of racial and ethnic
minorities in both intramural and external research. VA has also prioritized increasing recruitment of minority
populations in research studies. AHRQ, NIA, and NINDS are also funding multiple research grants related to
addressing disparities in ADRD care and services. For example, an ongoing AHRQ-funded project is examining
help-seeking intentions for AD among Korean American older adults. The focal points of NIH research grants
are wide-ranging and include topics such as prevalence of and social and biological drivers of ADRD disparities,
methods to improve recruitment of a diverse geriatric research workforce, and interventions to facilitate
healthy aging of older racial and ethnic minorities.

Interventions to address disparities in clinical care tend to focus on training providers. The VA Geriatric
Scholars Program, for example, partners with IHS to offer Rural Interdisciplinary Team Training (RITT) to Tribal
facilities in rural areas. The training is specifically focused on older adults with cognitive impairment and ADRD.
IHS not only trains providers, but also directly cares for and supports Native Americans with dementia and
their caregivers through Tribal and Urban Indian Health programs. HRSA trains providers nationwide on ADRD

 

May 2022 ISSUE BRIEF 3
care and treatment through its Geriatrics Workforce Enhancement Program (GWEP), which specifically
educates participants in providing culturally competent care. HRSA also partnered with CDC to create a series
of modules on ADRD care, including one entirely focused on racial and ethnic disparities. CMS works to
improve cross-provider communication and quality of care for individuals living with dementia, including
through the development of a common lexicon. CMS recently finalized the collection of Social Determinants of
Health (SDOH) standardized patient assessment data elements (SPADEs), which include race, ethnicity, and
preferred language/interpreter services. Through its Alzheimer's Disease Programs Initiative (ADPI), ACL
grantees design and disseminate trainings to support the education of medical professionals in providing
culturally competent dementia care, including bringing dementia education to federally qualified health
centers. Specifically, in Hispanic communities, community health workers are being trained and deployed to
support increased dementia screening and referrals to medical professionals for diagnosis.

As ADRD progresses, individuals often need to rely on long-term services and supports (LTSS) to help with
daily living. LTSS include both institutional care and home and community-based services. Unfortunately,
disparities also exist in the quantity and quality of the LTSS that individuals might receive. In order to address
disparities in LTSS, federal agencies are also providing training on culturally competent ADRD care to paid and
unpaid caregivers, and providers. HRSA training programs primarily target nursing home staff, and CMS also
has a number of resources for nursing home providers, such as webinars and fact sheets on Tribal Nursing
Home best practices. Both IHS and VA have initiatives that focus on providing caregiver support and training of
caregiver coaches, which are available in person and virtually. VA initiatives include courses and materials in
Spanish so as to better meet the needs of Hispanic caregivers. Additionally, agencies are enabling grantees to
tailor federally funded ADRD supports and services interventions to best meet the needs of their diverse
communities. ACL funds numerous interventions through ADPI that specifically focus on expanding health
equity and cultural competence in ADRD care and services. For example, one ongoing grant funds a
partnership between the State of South Carolina and the African Methodist Episcopal Church's Women's
Missionary Society to train members as Caregiver Coaches for the Resources for Enhancing Alzheimer's
Caregiver's Health (REACH) intervention, a strategy originally tested through funding from NIA.

Public education and awareness on ADRD have long been crucial goals for federal agencies and their partners.
Ongoing efforts include webinars, issue briefs, infographics, and education of the public health workforce. CDC
has played a particularly strong role in educating the public on ADRD, caregiving, and related racial and ethnic
disparities. For example, CDC leads efforts on the Healthy People 2020 and 2030 Core Objectives on ADRD,
which aim to increase awareness of ADRD diagnosis, reduce preventable hospitalizations, and increase
discussions on subjective cognitive decline with health care professionals. Progress on these objectives is
specifically being tracked for Hispanic, non-Hispanic Black, and non-Hispanic White individuals. IHS supported
CDC in development of the Healthy Brain Initiative Road Map for Indian Country.

The burden of known risk factors for ADRD, such as hypertension, diet, smoking, obesity, and untreated
hearing loss, is disproportionately high among racial and ethnic minorities. Direct federal efforts to reduce the
burden of risk factors for ADRD focus not only on actions individuals can take to reduce their risks, but also on
community and system-level investments needed to facilitate risk reduction and support healthy aging. For
example, FDA is working to allow for over-the-counter (OTC) hearing aids to encourage innovation and
accessibility. Hypertension is one of the most modifiable risk factors for brain health and potentially dementia.
NINDS's Mind Your Risks campaign educates the public on the importance of reducing blood pressure,
particularly in relation to dementia. NINDS is working to better target this campaign toward Black men in their
early 20s-40s, who are at the highest risk for high blood pressure in midlife and dementia incidence in late-life.
ACL enables states to provide home-delivered and congregate meals to help older adults meet their nutrition
needs. Black older adults are more likely to be food insecure, so such efforts are crucial to enabling healthy
aging among this population. CDC collaborated with the National Association of Chronic Disease Directors
(NACDD) to create a series of customizable educational rack cards on factors related to risk reduction of

 

May 2022 ISSUE BRIEF 4
dementia and funded the first Building Our Largest Dementia (BOLD) Public Health Center of Excellence of
Dementia Risk Reduction to serve as a national leader for public health on risk reduction of dementia. Through
Medicare, CMS covers obesity screenings and behavioral counseling to help with weight loss as well as
smoking and tobacco use cessation counseling. CMS, through the Medicaid program, partners with states to
make an array of certain services available to eligible beneficiaries, which could include smoking and tobacco
use cessation counseling, hearing aids, and home-delivered meals.

CONCLUSION

Since the NAPA was implemented in 2011, the Federal Government has made significant progress in its efforts
to reduce the impact of ADRD. Addressing racial and ethnic inequities across the dementia experience--from
differential prevalence of risk factors to a lower likelihood of diagnosis to poorer quality LTSS--has been a core
principle of the National Plan to Address Alzheimer's Disease since it was first released in 2012 and is reflected
in work across the government. In 2021, HHS reaffirmed its commitment to addressing racial and ethnic
disparities in ADRD by recognizing that:

the burden of risk factors for ADRD is disproportionately high among certain racial and ethnic
groups (e.g., Black, Hispanic, and AI/AN populations), and among adults with lower SES. These
disparities in the prevalence of risk factors--which are grounded in generations of structural
racism and inequality in health care--contribute to disparities in the incidence of ADRD that are
further amplified by disparities in ADRD diagnosis, treatment, and access to care and resources.

Using NAPA as a foundation, HHS and its federal partners continue to work to identify these disparities and
confront them with evidence-based practices designed to achieve equity in addressing ADRD.

 

May 2022 ISSUE BRIEF 5
APPENDIX: FEDERAL AGENCY WORK TO ADDRESS DISPARITIES

The following appendix lists the initiatives and programs led by federal agencies and departments that aim to
address racial and ethnic disparities in ADRD. These efforts are organized by topic (Research, Clinical Care,
Long-Term Services and Supports, Public Awareness and Education, and Risk Reduction) and then by agency or
department in alphabetical order."

Research

Agency for Healthcare Research and Quality (AHRQ)

e AHRQis funding three grants related to addressing disparities among older adults, particularly those
with dementia.

O°

Language Barriers and Post-Acute Outcomes in Home Care: A Mixed Methods Analysis. The
overall goal is to understand how language barriers impact 30-day rehospitalization and home
health care resource utilization among limited English proficiency (LEP) patients recently
discharged from the hospital, with a secondary aim of understanding the impact of language
barriers on functional status. This is a mixed-methods study in partnership with the Visiting
Nurse Service of New York, which documents the language skills and abilities of its employees
and patients thereby allowing researchers to identify linguistically concordant visits in its
extensive database of over a million LEP patient visits coming from 86,000 clients, with four
language groups (Spanish, Korean, Russian, Chinese). Related Article:

= "Home Health Care Services to Persons with Dementia and Language Preference"
Help-Seeking Intentions for Alzheimer's Among Korean Americans. Using a community-based
participatory research approach, this study examines potential barriers and facilitators to help-
seeking for AD in Korean Americans, the fourth largest and fastest-growing Asian American
subpopulation. Korean Americans are primarily foreign-born and non-English speaking and have
higher rates of AD risk factors (e.g., stroke, hypertension, and diabetes) than their non-Hispanic
White counterparts, making them a vulnerable group. Using a sequential mixed-method
approach, this will conduct a cross-sectional survey of 220 middle-aged and older Korean
American adults (Phase 1), followed by deliberative focus groups with 30 stakeholders in the
Korean American community (Phase 2). It will examine behavioral intentions for help-seeking
from each of the following areas: primary care physicians, AD specialists, care options, and
advance health care planning. Related Article:

= "The Intention to Discuss Advance Care Planning in the Context of Alzheimer's Disease

Among Korean Americans"

Centers for Disease Control and Prevention (CDC)

e Racial and ethnic estimates of ADRD in the United States (2015-2060) in adults aged 265 years.

O°

CDC authored a journal article in Alzheimer's & Dementia that estimates the future burden of
ADRD over the next several decades, It identified significant disparities by race and ethnicity,

with projected increases in cases seven times higher than today's estimates among Hispanics
and four times higher than today's estimates for African Americans.

 

" Note that within this appendix, the decision was made to defer to the submitting agencies on terminology for different races and
ethnicities, as the agency terms selected are based on the specifics of the program in question. Therefore, some agencies and
programs may use African American instead of Black American or Latin American or Latinx instead of Hispanic.

 

May 2022

ISSUE BRIEF 6
National Institute on Aging (NIA)

The NIA Strategic Directions document, updated in June 2020, includes clear steps to be taken by NIA
to better understand health disparities and develop additional strategies to improve the health status
of older adults in diverse populations.

In 2015, NIA's Alzheimer's Disease Education and Referral (ADEAR) Center developed an online mini-
portal for encouraging participation in AD research. The portal features information on participating in
AD research, an ADRD searchable clinical trial finder with user-friendly trial descriptions, and an
infographic and social media messaging. This information also now appears on Alzheimers.gov (see
below). NIA continues to promote participation in ADRD clinical trials and provide information and
resources, including the Focus on Aging interagency webinar series, through ADEAR to specific
populations, including racial and ethnic minorities.

In 2021 NIA launched OutreachPro, a web-based communication tool that enables researchers,
community groups, and others working on clinical trial recruitment to more easily produce and brand
tailored materials and strategies. The tool is designed to help the research community to access,
adapt, and personalize materials that NIA has developed--and will continue to create--for
underrepresented communities. OutreachPro currently includes a library of content developed for and
tested with American/Black populations, Hispanics/Latinos, and Asian American and Pacific Islander
communities. NIA is developing materials and content for specific American Indian and Alaska Native
communities and plans to include that content in the tool in late 2022.

NIA developed the Together We Make the Difference: National Strategy for Recruitment and
Participation in Alzheimer's and Related Dementias Clinical Research to outline practical, proactive
approaches to help study sites engage a wider, more diverse pool of volunteers. The National Strategy
was the result of a multiyear public-private collaboration that involved convening several workshops
and meetings designed to elicit feedback from a range of stakeholders, gathering feedback on
recruitment strategies through the IdeaScale crowdsourcing platform, and issuing a Request for
Information (NOT-AG-12-017). Recommendations of the National Strategy Group's Local, Diverse
Working Group have been transformed into an Alzheimer's Disease and Related Dementias Clinical
Studies Recruitment Planning Guide.

A pilot program, part of an ongoing collaboration between NIA and the VA Office of Research and
Development, has so far resulted in successfully recruiting more than 60 veterans for ADRD research.
As part of the program, VA and NIA are partnering with the NIA-funded Alzheimer's Disease Research
Centers (ADRCs) to increase veteran participation in research on ADRD. Strategic priorities for the pilot
include recruiting veterans, especially from diverse populations, and investigating unique risk factors
for this population. Recruitment materials, including a poster and an informational flyer for American
Indian veterans, are already available.

NIA recently launched the landing page Scientific Workforce Diversity and Health Disparities Research
Programs. It provides a one-stop shop of NIA's programs that aim to diversify the aging research
workforce, both within NIA and through its grantees and eliminate health disparities in research, in
part through novel recruitment initiatives to incorporate diverse participants in our clinical studies and
trials.

NIA's Butler-Williams Scholars Program aims to recruit and support new investigators into research,
with a focus on ethnic and racial minorities and aging.

One key component to improving enrollment of minorities into AD clinical studies is to ensure that
active studies' actual recruitment can be tracked and monitored quickly and efficiently against their
planned milestones. To do so, NIA has recently developed a unified Clinical Research Operations and
Management System (CROMS) that will provide NIA the capability to track, report and manage NIA's
clinical research enrollment data, activities, and portfolio in real time. CROMS will provide critical,
timely information for ensuring that NIA's clinical studies are making appropriate progress toward
reaching their inclusion recruitment goals related to multiple underrepresented groups, including

 

May 2022 ISSUE BRIEF 7
minorities. Using data from CROMS, NIA can then implement and enforce policies to address studies
that perform poorly with respect to minority enrollment.

e The NiA-funded Alzheimer's Clinical Trials Consortium (ACTC), a project established in 2017 that has
developed the infrastructure needed to accelerate and expand studies for therapies in ADRD,
continues to provide centralized resources and shared expertise to researchers nationwide to hasten
the development of effective interventions for ADRD. The ACTC is investing in methods and strategies
to enhance recruitment of racial and ethnic minority participants. The ACTC relies on community
engagement using an innovative hub-and-spoke model to create a core of community-based minority
and patient advocates who work closely with the recruitment units at ACTC sites. These advocates
serve as liaisons between the community and the ACTC sites, and they communicate the concerns and
perspectives of potential and enrolled study participants.

e In 2020, ACTC investigators successfully launched the Institute on Methods and Protocols for
Advancement of Clinical Trials in ADRD (IMPACT-AD) course that aims to educate and promote
diversity among research professionals and future researchers in the ADRD field. The inaugural class of
IMPACT-AD was held in September 2020, with the second class held in 2021, fostering the training and
career development of a diverse group of future ADRD clinical trialists.

e The NIA Health Disparities Research Framework, developed and adopted in 2015, showcases priorities
and investments in this important aging research area. The Framework outlines four key levels of
analysis related to disparities research--environmental, sociocultural, behavioral, and biological--with
priority focus areas in each level. Using the Framework as a guide, NIA has awarded over $100 million
in research awards between 2015 and 2020 to explore the determinants of health disparities related
to aging, including improving recruitment and retention of underrepresented groups in research;
understanding pathways that create and sustain ADRD health disparities; and addressing disparities
within the context of both formal and informal caregiving.

e The NIA |Mbedded Pragmatic ADRD Clinical Trials (IMPACT) Collaboratory was launched in 2019 to
build the nation's capacity to conduct pragmatic clinical trials of interventions embedded within health
care systems for people living with dementia and their care partners. The IMPACT Collaboratory was
launched with a Health Equity Team that focuses on developing strategies to address diversity and
inclusion for conducting pragmatic clinical trials.

e In 2019, NIA launched a funding opportunity (RFA-AG-20-023) for Exploratory ADRCs. NIA has since
funded four exploratory ADRCs, which will broaden current ADRC research initiatives with additional
underrepresented populations such as Black Americans, Native Americans, and those in rural
communities. In addition, in 2021 NIA funded two new ADRCs in Texas and North Carolina, which
bolster ADRD research specifically among Mexican American Hispanics and Black/African Americans.

e Through the funding opportunities Health Disparities and Alzheimer's Disease (PAR-15-349) and
Emerging Directions for Addressing Health Disparities in Alzheimer's Disease (PAR-15-350), both
originally launched in 2015, NIA--in collaboration with four other institutes--invited applications to
study health disparities in ADRD, including biological, behavioral, sociocultural, and environmental
factors that influence population-level health differences. Currently, NOT-AG-21-033 encourages
applications that examine mediators and moderators of disparities in ADRD, using diverse cohorts of
subjects. To date, NIA has funded more than 115 projects in response to this initiative.

@ NIA's Aging Research on Stress and Resilience to Address Health Disparities in the United States (RFA-
AG-16-022), launched in 2015, was a funding opportunity designed to spur interdisciplinary health
disparities research related to aging that considers the role that stress, including responses to stressors
and stress resilience, plays in differential health outcomes among aging populations in the United
States NIA funded two projects via this funding opportunity.

e Detecting Cognitive Impairment, Including Dementia, in Primary Care and Other Everyday Clinical
Settings for the General Public and in Health Disparities Populations (RFA-NS-17-012), posted in 2017,
was a funding opportunity to address the unmet need to detect cognitive impairment, including
dementia, in large and diverse populations seen in primary care across the United States, including in

 

 

May 2022 ISSUE BRIEF 8
health disparities populations, when a patient, relative, or care provider indicates concern. The
program is jointly supported by NINDS and NIA. NIA funded three projects in response to this funding
opportunity.

® Geriatrics and Clinical Gerontology Research to Address Health Disparities in the United States (PA-18-
751), offered by NIA in 2018, supported geriatrics and clinical gerontology research that addressed
disparities in aging and health, with an emphasis on preclinical and clinical studies. The supplement
program focused on mechanisms through which disparities influence age-related change;
environmental, sociocultural, and biological influences on aging health disparities; and geriatric
conditions where disparities emerge in diagnosis, prognosis, or treatment, including palliative and end-
of-life care. NIA supported six projects through this funding opportunity.

e In 2018, NIA released the Small Research Grant Program for the Next Generation of Researchers in
Basic ADRD Research opportunity (RFA-AG-19-003), aimed at producing trained clinical investigators
pursuing careers in the field of ADRD research. One key objective is to enhance workforce diversity by
encouraging individuals from nationally underrepresented groups to apply. NIA funded nearly 30
projects in response to this funding opportunity.

e In 2018, NIA released a funding opportunity called Examining Diversity, Recruitment, and Retention in
Aging Research (PAR-18-749) for investigators who are focused on improving the research tools,
methods, and recruitment practices used in clinical studies to produce a significant number of
committed research participants in aging research. Through this funding opportunity, NIH is supporting
a collaborative network comprised of 15 teams at research institutions nationwide to help inform
scientists how to overcome barriers to enrolling research participants from underserved communities.

e In November 2018, NIA released NOT-AG-18-047 to encourage grant applications for projects that
examine health disparities related to AD, as well as strategies for recruitment and retention into
clinical studies. NIA funded more than 60 projects in response to this initiative. Collectively, projects
compared differences in risks for these conditions for men versus women, different racial and ethnic
groups, rural communities, socioeconomically disadvantaged neighborhoods, and other societal and
individual factors. NIA funded an initiative focused on Socioeconomic Disparities in Health and
Mortality at Older Ages (RFA-AG-18-011), which resulted in funding of six projects by NIA.

e In 2019, NIA and National Institute on Minority Health and Health Disparities (NIMHD) released a
funding opportunity announcement to establish collaborations to facilitate Building Resources for the
Basic Biology of Aging in Health Disparities Research (RFA-AG-20-035). This initiative will provide a
platform for discovery and pilot projects to establish feasibility of novel approaches to be used by
these collaborations. Projects must include human participants and are expected to explore
accelerated aging (i.e., earlier-than-expected physical changes typically associated with aging) as a
driver of health disparities. Additionally, NIA utilizes administrative supplement programs to support
research that addresses health disparities in ADRD, such as Aging Research to Address Health
Disparities (PA-17-164 and PA-16-225 [the latter with NIMHD]). First launched in 2014 and 2015,
respectively, these funding opportunities support research that addresses disparities in aging and
health, with a specific focus on biological processes and mechanisms that are relevant to health
disparities in aging. NIA has funded four projects under PA-17-164 and four projects under PA-16-225.

e In 2020, NIA issued two Request for Applications (RFA-AG-20-050 and RFA-AG-20-051) for early
detection of cognitive decline in older adults to pursue validation studies of cognitive screening
instruments or assessments for diverse populations in clinical settings and to translate these screening
and assessment tools into electronic health record systems that can assist physicians in making
clinically meaningful care recommendations for patients experiencing cognitive decline.

e In 2022, NIA joined a funding opportunity announcement (RFA-MD-22-004) to support the
development of innovations for healthy living that improve minority health and eliminate health
disparities. NIA is soliciting a broad range of innovations focused on addressing health disparities in
ADRD.

 

May 2022 ISSUE BRIEF 9
e The Health and Retirement Study (HRS), a critical investment of NIA and an example of a highly
productive collaboration with the Social Security Administration, was designed to collect and distribute
a wide range of multidisciplinary data to support research on aging. Launched in 1992, this longitudinal
study surveys a population-representative sample of more than 20,000 Americans over the age of 50
every two years. To further facilitate health disparities research, the HRS added 2,000 additional
African American and Hispanic respondents to the existing oversample of these populations. By
continuing to diversify this cohort, researchers using HRS data will be better able to design studies that
provide insights into potential racial/ethnic differences in the incidence, prevalence, and impact of
ADRD. In most of these studies, important biomarker data, including DNA for genotyping and future
sequencing, is also being collected. Sister studies of HRS include diverse audiences. For example, NIA
supports the Mexican Health and Aging study, a national longitudinal study of adults 50 years and
older in Mexico designed with protocols highly comparable to HRS. This sister study examines aging
and disease burden in older Mexicans. The original survey was conducted in 2001, with new cohorts
added in 2012 and 2018.

e NIA's Health and Retirement Study: Harmonized Cognitive Assessment Protocol (HCAP) initiative,
started in 2016, is an innovative approach to assessing trends in cognitive function and aging in the
United States and worldwide. HCAP currently includes approximately 3,500 HRS participants over the
age of 65 randomly sampled from HRS. A translated and adapted version of the neuropsychological
test battery employed in HCAP is being administered to population-representative samples in other
developed and developing countries where HRS-like representative population surveys are conducted.
These HRS "sister studies" include studies conducted in China, England, India, Mexico, South Africa,
and parts of the European Union. For example, NIA supports Mexi-Cog (Mexican Health and Aging
Study).

@ NlAsupports 15 Edward R. Roybal Centers for Translational Research in the Behavioral and Social
Sciences of Aging, as well as a coordinating center. The goal of the Roybal Center program, first
authorized in 1993, is the translation and integration of basic behavioral and social research findings
into interventions to improve the lives of older people and the capacity of institutions to adapt to
societal aging. In September 2016, the Edward R. Roybal Institute on Aging at the University of
Southern California, in collaboration with the LatinosAgainstAlzheimer's Network and Coalition,
released a report to help understand the growing impact of AD on the Latinx community and the
nation.

© "Latinos and Alzheimer's Disease: New Numbers Behind the Crisis"

e NIA's Resource Centers for Minority Aging Research (RCMARs) program, initially funded in 1997, serves
as NIA's flagship mentoring program for scientists from historically underrepresented groups who
conduct behavioral and social research focused on aging and health disparities in older adults. In 2018,
NIA expanded the RCMAR program to fund eight new Centers focused on behavioral and social
research related to ADRD. These new AD-RCMARs are providing mentorship to scientists conducting
research on the epidemiology of dementia, preventive interventions, and formal and informal care
challenges, among other topics.

e The need to understand the sources of persistent health disparities in overall longevity, cardiovascular
disease, and cerebrovascular disease led NIA to develop the Healthy Aging in Neighborhoods of
Diversity across the Life Soan (HANDLS) study. The primary objective of HANDLS has been to conduct a
20-year longitudinal study, beginning in 2004, of minority health focused on investigating the
relationship between race, socioeconomic status, and health outcomes--including those related to AD.
The study is ongoing.

e Launched in 2021, the Neighborhoods Study: Contextual Disadvantage and Alzheimer's Disease and
Related Dementias brings together 22 ADRC sites to examine the impact, mediators, and moderators
of exposure to neighborhood disadvantage on cognitive decline and pathologic features. Detailed
residential histories will be created to establish a dosage and timing of neighborhood disadvantage
exposure across each life course.

 

 

 

 

May 2022 ISSUE BRIEF 10
e NIA funds the Vietnamese Insights into Cognitive Aging Program to explore the role of adversity and
trauma on AD risk in Vietnamese Americans.

e The Accelerating Medicines Partnership® 2.0 program (AMP AD 2.0) was launched in March 2021. This
NIA-led public-private partnership, managed by the Foundation for NIH, brings together five partner
organizations from the pharmaceutical industry and the non-profit sector. Because the prevalence of
this disease is greater among Black and Latino Americans than among White Americans, the central
goal of AMP AD 2.0 is to expand the molecular characterization of AD in brain, blood and spinal fluid
samples collected in these diverse populations. These datasets will allow the AMP AD 2.0 research
teams to refine the characterization of new targets, discover new fluid biomarkers, define disease
subtypes and increase the understanding of causative factors and steps in disease progression. The
knowledge gained will inform the development of therapies that can be tailored to different stages of
the disease and diverse disease risk profiles.

e The Alzheimer's Disease Sequencing Project (ADSP) serves as an international resource of genetics
data from multiple centers and studies. Launched in 2012 as a collaboration between NIA and the
National Human Genome Research Institute, the ADSP is designed to promote innovative collaboration
among scientists to provide genetic samples for sequencing, with the goal of identifying from
multiethnic populations new genetic variants that influence risk and protection from AD. The NIA
Genetics of Alzheimer's Disease Data Storage Site serves as the ADSP Data Coordinating Center. In
2017, NIA launched the ADSP Follow-Up Study, which aims to pursue rare variants in a range of
different populations, including those that have been underrepresented in sequencing studies.
Leveraging the existing infrastructure of the ADSP, the Follow-Up Study aims to generate whole
genome sequence data in African American, Hispanic, Native American, and Asian populations. The
Follow-Up Study 2.0 was launched in 2021 to expand ADSP samples to increase diversity and be more
representative of the United States population.

e The NlA-supported Study of Latinos-Investigation of Neurocognitive Aging (SOL-INCA) project, initiated
in 2015, is analyzing SOL-INCA's wealth of data to examine how genetics and cardiovascular disease
risk factors impact the prevalence of neurocognitive disorders among middle-aged and older
participants. SOL-INCA scientists hope to find sociocultural risk and protective factors that may
contribute to observed differences in dementia rates in the Latinx community. Its long-term goal is to
identify targets that can be tested for actionable, culturally appropriate strategies for preventing or
delaying the progression of dementia.

e The Health and Aging Brain among Latino Elders (HABLE) study, launched in 2017, investigates
cognitive aging among Latinx elders, primarily Mexican Americans. In 2020, NIA awarded new support
for an extension called the Health and Aging Brain Among Latino Elders-Amyloid, Tau, and
Neurodegeneration (HABLE-AT(N)) Study. The extension will support more biomarker measures,
including positron emission tomography (PET) imaging, to better understand health disparities of brain
aging and ADRD between Mexican Americans and non-Hispanic Whites.

e The NlIA-funded ACTC, a clinical trials infrastructure established in 2017 to accelerate and expand
studies for therapies in ADRD, is investing in methods and strategies to enhance recruitment of racial
and ethnic minority participants. ACTC relies on community engagement using an innovative hub-and-
spoke model to create a core of community-based minority and patient advocates who work closely
with the recruitment units at ACTC sites.

e The nationwide All of Us Research Program is seeking to enroll one million participants by 2024 who
will reflect the diversity of the United States to help build one of the most diverse health databases in
history and to learn how our biology, lifestyle, and environment affect health. This is one example of
NIH's commitment to enrolling participants from diverse backgrounds to help identify the genetic
variants and other risk and protective factors involved in health and disease. The diagnosis of
dementia is captured through electronic health records and survey responses, and many of the
participants who have already enrolled are living with ADRD. The scientific community, including
dementia researchers, can access participant data via the All of Us Research Workbench, launched in

 

 

May 2022 ISSUE BRIEF 11
May 2020. Data currently available for analysis in the Workbench include information sourced from
participant surveys, electronic health records, physical measurements, and wearables. As the program
grows, additional data--including genomic data--will become available so that researchers can conduct
analyses by a wide array of factors including lifestyle differences, socioeconomic factors, environment,
and genes and other biologic characteristics. Program enrollment began in 2018.

The Diversity and Cognitive Aging: Progress and Future Challenges meeting was held in March 2016, at
the Latino Aging Research Resource Center, a former NIA-funded RCMAR (see above) focused on the
future directions in aging and diversity research in the United States. The conference highlighted NIA-
funded research in northern California and brought together nearly 100 leading national experts to
discuss building a collaborative, nationwide framework for disparities research.

In July 2020, NIA, in collaboration with the Alzheimer's Association, held the Developing Applied
Science of Recruitment and Retention for ADRD Clinical Research Symposium at the Alzheimer's
Association International Conference. This symposium provided a broad perspective that builds on
existing scientific knowledge to support the goal of ultimately accelerating and expanding research
efforts on recruitment strategies for clinical trials for ADRD. One specific goal of the symposium was to
identify challenges and opportunities in enhancing clinical trial participant diversity.

In July and August 2020, NIA held the second National Research Summit on Care, Services, and
Supports for Persons with Dementia and their Caregivers, during which multiple sessions discussed the
importance not only of making research on dementia and dementia care more person-centered but
also the need to address racial and ethnic disparities in dementia care and research.

National Institute of Neurological Disorders and Stroke (NINDS)

In March 2019, NINDS hosted the most recent Alzheimer's Disease-Related Dementia Summit.
Outcomes of the summit included identification of 47 research gaps and opportunities to help guide
investment in dementia research. Among the highest priority recommendations were the creation and
improvement of cognitive assessment tools that are culturally and linguistically optimized for
populations facing ADRD health disparities. In addition, the Summit's final report included the
recommendation to increase policy-relevant research on disparities in access to care, awareness and
stigma, and costs of care for persons living with ADRD, their families and caregivers.

In 2019, NINDS launched a scholarship program to offset barriers to attend the ADRD Summit.
Aggressively removing barriers to inclusion is critical for inclusion of diverse perspectives on health
disparities. The goal of this program, which awarded 21 scholarships (including 12 to women and nine
to self-declared diverse applicants), was to provide a positive and informative experience that add to
ADRD knowledge for trainees across a wide spectrum of fields. Emphasis was placed on professionals
in training roles related to ADRD so that their unique perspective would be represented and so that
the information they learned would be incorporated into the training that they offer.

The NINDS Human Genetics Resource Center, hosted by the Coriell Institute for Medical Research,
receives blood samples and clinical data and prepares DNA and cell lines for distribution to promote
neurogenetics research (including ADRDs). This resource now includes 1,000 African American DNA
samples from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study.

The ongoing Research Supplements to Promote Diversity in Health-Related Research (PA-20-222)
focuses on increasing the number of minority scientists focused on health disparities research. NIA has
supported approximately 20 supplements via this funding opportunity. Likewise, NINDS issued the
Notice to Encourage Eligible NINDS ADRD Awardees to Apply for PA-20-222 in 2020 and has made 15
awards so far in 2021.

Several NIH institutes are participating, including NIA and NIDS, in an NIMHD sponsored research
Opportunity focused on addressing structural racism and discrimination (SRD) called "Understanding
and Addressing the Impact of Structural Racism and Discrimination on Minority Health and Health
Disparities" (RFA-MD-21-004). Under this funding opportunity, NINDS specially invites research

 

May 2022 ISSUE BRIEF 12
applications on the impact of SRD on mechanisms related to increased risk of cognitive impairment
and ADRD.

NINDS's Northern Manhattan Study (NOMAS) is an ongoing population-based study in Northern
Manhattan, based in the Neurological Institute at Columbia Presbyterian Medical Center. It began in
1990. It has enrolled over 4,400 people from the surrounding community. NOMAS is the first study of
its kind to focus on stroke risk factors in Whites, Blacks, and Hispanics living in the same community. It
is helping to fill gaps in our knowledge of stroke epidemiology and complications like dementia in
minority populations.

NINDS's REGARDS has followed its participants for nearly two decades to understand why Southerners
and Black Americans have higher rates of stroke and related cerebrovascular diseases that affect brain
health. In its most recent renewal, an emphasis on cognitive decline and dementia outcomes was
added. Data from this cohort have had a significant impact on our understanding of disparities in
stroke and dementia risk and outcomes among Black Americans compared to Whites. REGARDS
findings underscore the high need for community-based, primary prevention interventions, especially
for hypertension control.

Launched in 2020, the NINDS' "Diverse VCID: White Matter Lesion Etiology of Dementia in Diverse
Populations" is a prospective clinical research study of patients, particularly those from
underrepresented groups who are at risk for cognitive decline in that they present with cognitive
complaints and exhibit incidental white matter lesions found on neuroimaging scans. This project will
use advanced brain imaging and blood-based techniques to understand how vascular changes in late
life cause brain injury and cognitive decline.

Launched in 2020, the Determinants of Incident Stroke Cognitive Outcomes and Vascular Effects on
Recovery (DISCOVERY) study, funded by NIA and NINDS, aims to determine the specific subsets of
stroke-related events that cause cognitive impairment and dementia in people who have had a stroke,
especially within racial and ethnic minorities who are at higher risk of stroke, cognitive impairment,
and dementia. The long-term goal of this study is to identify potential targets for personalized
medicine and dramatically reduce the rates of cognitive and functional disability following stroke in
high-risk United States populations.

Launched in 2017, the Consortium for Detecting Cognitive Impairment, Including Dementia (DetectCID)
is a collaborative network of research programs that are developing and validating dementia screening
tools that are simple to use, standardized, and take ten minutes or less to administer in a primary care
setting or other everyday clinical settings. The ultimate goal is to increase early detection of cognitive
impairment and dementia and lessen cultural and logistic barriers that currently impede both clinical
care and research efforts. Up to half of the funded research focuses on approaches that are specifically
designed to address barriers to detecting cognitive impairment in underserved populations. Now in
Phase 2, the DetectCID research teams are scaling up their research by enrolling a larger number of
research participants, including at least 50% from racial and ethnic minority groups.

NINDS recently renewed the MarkVCID consortium, a collection of nine research sites and a
coordinating center devoted to developing biomarkers for the small vessel diseases of the brain that
lead to vascular cognitive impairment/dementia. The consortium has developed 11 different
biomarker kits, which include several types of vascular imaging and fluid-based biomarkers. Now in
Phase 2, the focus of the next five years will be clinical validation in longitudinal studies in diverse
populations. It is expected that MarkVCID will determine the respective effectiveness of several
biomarker kits in Hispanic, Black/African American, and White populations.

 

Department of Veterans Affairs (VA)

VA GRECCs explore race and ethnicity in a variety of dementia-specific or dementia-relevant research,
education, and/or clinical demonstration projects. Examples of topics in 2020 include race and
socioeconomic status-related disparities in magnetic resonance imaging markers of dementia risk and
brain aging; ADRD in Older African American and White veterans; an agenda for addressing

 

May 2022 ISSUE BRIEF 13
multimorbidity and racial and ethnic disparities in ADRD; dementia and falls management in
underserved populations; payment for care services to individuals living in the community with
dementia; Medicaid contribution to costs of dementia care in an ethnically diverse community; and
developing a research participation enhancement and advocacy training program for diverse seniors.
In 2019, topics included dementia caregiver interventions in Chinese people; and Medicare
expenditures and health care utilization from incident to death in a multiethnic community-based
population with Dementia.

e VAand U.S. Department of Defense nationwide, multisite Long-term Impact of Military-relevant Brain
Injury Consortium (LIMBIC) is applying "big data" and longitudinal prospective research methodologies
to investigate the risk of combat concussions and comorbid conditions in later life dementia. The
LIMBIC research program has been successful in recruiting a higher percent of ethnic minorities into its
research study than in the general United States population, in order to be reflective of the military
population they are studying. Key contributors to the representativeness and diversity of the cohort
are the geographic and population diversity across the study enrollment sites, a wide range of
recruitment approaches (in-person at VA medical facilities and military treatment facilities, radio ads,
print ads, social media groups), and attempts to hire diverse and veteran/military-centric recruitment
staff.

e The VA Office of Research and Development issued a fiscal year 2021 funding announcement to
support health services research on racial and ethnic disparities and SDOH. Although this Request for
Proposals is not dementia-specific, the results of research that it funds may benefit individuals with
dementia, among others. This solicitation seeks applications that will identify, develop, evaluate,
and/or implement evidence-based practices to mitigate unmet social needs of veterans; examine
structural factors within VA Health Care that may contribute to disparities; and reduce racial and
ethnic disparities in health outcomes and quality of care among veterans.

e The Elizabeth Dole Center of Excellence for Veteran and Caregiver Research (EDCoE) is part of the VA
Choose Home Initiative. The purpose of the EDCoE is to expand VA capacity to deliver integrated,
veteran and caregiver-partnered, data-driven approaches to care through a set of complimentary
projects whose results will inform VA operational leaders in expanding VA caregiver programs. The
EDCoE conducts a set of complementary research projects, two of which can inform our understanding
of racial and ethnic health equities in veterans, including those with ADRD.

o The EDCoE is conducting analyses using VA administrative data to assess which types of home-
based care services are most effective for different veteran populations in terms of preventing
institutionalization and hospitalization. As part of this analysis, race and ethnicity data are
included as covariates, allowing the EDCoE to assess their roles as factors influencing outcomes.
Similarly, the EDCoE can focus these analyses on veterans living with ADRD.

o As part of a study of the impact of COVID-19 on veteran caregivers, the EDCoE is surveying and
interviewing caregivers with regard to how COVID-19 has impacted their roles. The EDCoE is
collecting data regarding caregiver race and ethnicity and will be examining their association
with other caregiver outcomes. While the EDCoE is not collecting data regarding specific veteran
conditions, it is collecting data regarding the types of supports that caregivers are providing.
These data will provide some insights regarding the role of race and ethnicity for Veterans who
receive services typical of those with ADRD.

o Finally, the EDCoE is conducting a longitudinal study of high-need, high-risk veterans and their
caregivers, using survey and administrative data to assess evolving needs of this group over
time. Veterans living with ADRD are highly represented in this high-need, high-risk group. We
will be collecting veteran race and ethnicity data and can make assessments regarding their
association with changing veteran and caregiver needs over time.

e The Veterans Health Administration Office of Health Equity (OHE) has established a COVID-19 database
that includes information on veterans' testing history, demographics, and comorbidities including

 

May 2022 ISSUE BRIEF 14
dementia. OHE is actively conducting analyses of COVID-19 and mortality outcomes for racial and
ethnic minority veterans with dementia.

Clinical Care
Centers for Medicare & Medicaid Services (CMS)

e In response to the IMPACT Act of 2014, CMS finalized the collection of SDOH SPADEs in our post-acute
care quality reporting programs (QRPs), including: Race, Ethnicity, Preferred Language/Interpreter
Services, Health Literacy, Transportation, Social Isolation.

o The SDOH SPADEs are standardized, interoperable, and support provider exchange of electronic
health information (are mapped to Health Information Technology vocabularies and exchange
standards).

o These data elements have been added to the assessment instruments of skilled nursing facilities,
inpatient rehabilitation facilities, long-term care hospitals and home health agencies. The onset
of collection of this data in our post-acute care assessment instruments has however been
delayed due to the COVID-19 public health emergency.

© Although the Hospice QRP (HORP) does not fall under the IMPACT Act, CMS is aligning the HORP
program with the other QRPs, where practicable. Currently, race, ethnicity and preferred
language/interpreter services are being tested in the HQRP.

e The Social Security Act (Section 1139B) requires the Secretary of HHS to identify and publish a core set
of health care quality measures for adult Medicaid enrollees. The 2022 Adult Core Set was released in
a December 2021 Informational Bulletin. For fiscal year 2020 reporting, 33 states report with a median
of 59% of adult with hypertension have their blood pressure adequately controlled.

Health Resources and Services Administration (HRSA)

e HRSA, in collaboration with CDC, has created a 16-module ADRD curriculum which has continuing
education accreditation for continuing education units, continuing education contact hours, continuing
nursing education and continuing medical education. These modules are accessible through the HRSA
Train Health Care Workers About Dementia page. Module 3 is dedicated to diversity and equity.

e HRSA's GWEP is providing education and training about ADRD to the health care workforce, which
includes practicing health professionals, students, residents, fellows, faculty, patients and their families
and caregivers, in 35 states and two United States territories. This work is done in collaboration with
academic institutions that provide the geriatrics expertise, primary care practices where the patients
are cared for, and community-based organizations that provide services, supports and resources that
ensure that the health care offered can be accessed. All of the 48 funded GWEPs are training the
primary care workforce to provide culturally competent health care and address the SDOH for
patients, families, and caregivers in underserved and rural areas.

© HRSA's GWEP program received $4.35 million for one-time supplemental funding for COVID-19
workforce training in telehealth and tele-education for 12 months. Forty-eight GWEPS used the funds
to train students and clinicians currently involved in health professions training on:

o Howto provide telehealth-enabled COVID-19 referral for screening and testing, case
management and outpatient care.

o Maintaining primary care functionality away from physical sites, especially for COVID-19 positive,
quarantined older adults and individuals at a higher risk of severe illness.

o Toaddress the digital divide and digital literacy, funds could also be used to purchase needed
telehealth equipment for use by patients, and their caregivers and families in order to promote
access and health equity.

e HRSA made 12 competitive supplemental GWEP awards in September 2021 to provide COVID-19
specific education and training to the nursing home workforce and nursing home residents and their

 

May 2022 ISSUE BRIEF 15
families and caregivers, within the context of the age-friendly health systems framework. This training
must address best practices regarding the management and treatment of frail older adults living in
nursing homes, including those living with dementia, who are at risk of contracting COVID-19 or who
are currently ill with COVID-19, their families and caregivers who have been impacted by COVID-19,
and families and caregivers of persons who have died of COVID-19. Successful applicants will
collaborate to develop and disseminate a curriculum of COVID-19 management and treatment in
nursing homes. This curriculum will include modules that address how Inclusion, Diversity, Equity, and
Access are impacted by race, ethnicity, rural and urban environments, and sex/gender identity of
populations of nursing home residents in each of the ten HHS geographical regions.

Indian Health Services (IHS)

The IHS mission is to raise the physical, mental, social, and spiritual health of American Indians and
Alaska Natives to the highest level. IHS provides care through direct services and in support of Tribal
and Urban Indian Health programs to persons living with dementia and their families.

IHS has partnered with VA on the VA Greater Los Angeles, supported by the Office of Rural Health, to
offer the RITT to IHS and Tribal facilities in rural settings who provide care to American Indian and
Alaska Native elders, with a focus on elders with cognitive Impairment. In March 2020, the VA Geriatric
Scholars program added to the RITT a training specifically targeted to IHS and Tribal public health
nurses providing support to caregivers of persons living with dementia: Addressing Behavioral
Challenges with Dementia (ABCD).

Department of Veterans Affairs (VA)

The VA Geriatric Scholars Program is a workforce development program to integrate geriatrics into VA
primary care practices, through a collaboration among VA GRECCs.

o The VA Geriatric Scholars Program has offered Rural Interdisciplinary Team Training in Care of
Elders to IHS and Tribal Health Programs since 2016. This training includes recognition and
assessment of ADRD among American Indians.

o In 2020 the VA Geriatric Scholars Program began delivering a program to IHS that was targeted
to Public Health Nurses and other clinicians. The ABCD program (see above) combines didactics
and monthly telephone consultation on addressing behavioral and management issues around
ADRD in American Indians.

o In 2021, the VA Geriatric Scholars Program's mental health webinar series on clinical care of
special populations discusses racial and ethnic equities. Although ADRD are not a specific focus
of these webinars, the content may apply to those with ADRD. Examples of related webinar
topics include Introducing Cultural Diversity Factors in Interdisciplinary Treatment Plans and
Cultural Considerations in Care of American Indian Elders.

Long-Term Services and Supports

Administration for Community Living (ACL)

Through its ADPI, ACL and grantees demonstrate commitment to addressing the needs of those racial
and ethnic communities disproportionately impacted by ADRD. ACL's ADPI grantees are awarded with
the expectation that program funding aligns with the Older American's Act in that program efforts
target those of greatest economic and social need. Programmatic efforts to expand health equity are
demonstrated through calculated efforts to engage historically underserved populations with
culturally competent resources that are designed with specific cultural traditions in mind and for
delivery by members of their community. ACL funded programs and services are successfully reaching
historically underserved racial and ethnic (e.g., African American, Asian and Pacific Islander, Latinx and
Native American) and geographic (e.g., frontier, rural, and urban) communities and continue to expand

 

May 2022 ISSUE BRIEF 16
their reach. ACL funded programs that are dedicated to the provision of culturally competent
dementia-capable home and community-based services include:

o InLos Angeles, California, through ACL's ADPI, ACL is working with leading health care system
AltaMed to deliver culturally competent training, supports and services to Latino, multiethnic
and underserved communities. ACL funds support AltaMed embedding much needed evidence-
based and evidence informed caregiver trainings (SAVVY/SAVVY Express and Telenovela) and
support groups in the communities they serve.

© InChicago, Illinois, the Latino Alzheimer's and Memory Disorder Alliance (LAMDA) is providing
dementia education, including SAVVY caregiver training, to their trusted community health
worker network of Promotoras, to educate communities on ADRD as well as supporting and
delivering supportive services for caregivers and people living with dementia.

© The State of South Carolina, through their 2020 ADPI, is working with the African Methodist
Episcopal Church's Women's Missionary Society to train members as Caregiver Coaches for the
REACH intervention. Through the program, trained coaches will support family caregivers from
their faith community with culturally competent education designed to reduce their stress and
burden, as well as resources for dementia-capable respite.

o In Chicago, Honolulu, Los Angeles and San Francisco ADPI grantees are bringing cultural
competence to evidence-based interventions and dementia education to Asian Pacific Islanders
(Chinese, Japanese, Korean, Vietnamese) in their communities. The communities are benefitting
from culturally competent adaptations of supports and services, including SAVVY Caregiver,
REACH Community, care navigation programs, memory cafés, and Dementia Friendly Community
programs.

oO In 2020, ACL released its first ADPI call for applications for its new Dementia Capability in Indian
Country program. All applicants received funding. In 2020, the applicants funded were Aleutian
Pribilof (Alaska), Absentee Shawnee Tribe (Oklahoma), Great Lakes Inter-Tribal Council
(Wisconsin) and Spirit Lake Tribe (North Dakota); in 2021, applicants funded were Intertribal
Council of Arizona and Wichita and Affiliated Tribes. Each program is different, designed to meet
the needs of their community. Program activities include, but are not limited to, delivery of
REACH into Indian Country, SAVVY Caregiver in Indian Country, community health worker
programs to support caregivers and people living with dementia and culturally competent
dementia education programs.

Centers for Medicare & Medicaid Services (CMS)

The National Partnership to Improve Dementia Care in Nursing Homes (National Partnership) has been
committed to finding new ways to implement practices that enhance the quality of life for people with
dementia, protect them from substandard care and promote goal-directed, person-centered care for
every nursing home resident. The inappropriate use of antipsychotic medications in nursing homes has
a substantial impact on the quality of life and health outcomes of residents, in particular Medicaid
residents. A recent study showed that nursing homes with higher proportions of Medicaid residents
had higher rates of inappropriate antipsychotic use, whereas nursing homes with higher proportions of
Medicare residents had lower rates of inappropriate antipsychotic use. The same study also found that
nursing homes with a high proportion of Black residents had significantly lower rates of inappropriate
antipsychotic use."? The actions of the National Partnership seek to provide additional information
regarding antipsychotic medication use, which will improve the quality of care provided to residents in
all Medicare and Medicaid certified long-term care facilities. Since the launch of the National
Partnership, significant reductions in the prevalence of antipsychotic medication use in long-stay
nursing home residents have been documented. In 2011 Q4, 23.9% of long-stay nursing home
residents were receiving an antipsychotic medication; since then, there has been a decrease of 39.6%
to a national prevalence of 14.4% in 2021 Q2. Success has varied by state and CMS region, with some
states and regions having seen a reduction of greater than 45%. As a result of this reduction, there has

 

May 2022 ISSUE BRIEF 17
been an improvement in resident's quality of care and quality of life, in particular, Medicaid
beneficiaries.

Health Resources and Services Administration (HRSA)

HRSA's GWEP recipients are participating in the AHRQ Project ECHO nursing home project, which is
reaching out to provide infectious disease and emergency preparedness training to all nursing homes
in the United States. The GWEP faculty are providing geriatrics expertise to these trainings and are
serving as resources for the nursing home staff, which includes health care professionals,
administrators, direct care workers, certified nursing attendants, housekeeping staff, and food service
staff. In 2016, 47.8% of nursing home residents had some form of dementia," necessitating that the
GWEPs provide education and training in ADRD and the impact of COVID-19 on that population. All of
this training impacts the vulnerable nursing home population and is designed to promote access and
health equity.

Indian Health Services (IHS)

IHS has collaborated with ACL and CMS on a variety of efforts in support of Tribal LTSS, including the
CMS technical assistance website, an ongoing webinar series, and periodic meetings to share best
practices in Tribal LTSS.

IHS has partnered with VA from 2015-2018 to train caregiver coaches in Tribal communities, in
partnership with the VA REACH Training Center at the University of Tennessee Health Sciences Center.
According to data provided by the REACH Training Center as of 2018, REACH into Indian Country
trained and certified 80 caregiver coaches in 56 distinct Tribal communities. These caregiver coaches
reported delivery of REACH services to 55 caregivers.

Public Awareness and Education

Centers for Disease Control and Prevention (CDC)

Healthy People 2020 and 2030 Core Objectives on Dementias, including Alzheimer's (here referred to
as ADRD).

o CDC's Alzheimer's Disease and Healthy Aging Program leads, in coordination with NIA and ACL, 3
ADRD Healthy People 2030 objectives. The Program also led the Healthy People 2020 objectives.
The focus of each of the three ADRD objectives are increasing awareness of ADRD diagnosis,
reducing preventable hospitalizations, and increasing discussions related to subjective cognitive
decline with health care professionals. For each objective, progress towards identified targets
are tracked across the decade (2021-2030). Progress is specifically being tracked for Hispanics,
non-Hispanic Blacks, and non-Hispanic Whites.

State of Aging and Health in America: Data Brief Series.

o CDC collaborated with the NACDD to create four data briefs on public health issues related to
older adults, with a focus on cognitive decline. Each brief provides data from the Behavioral Risk
Factor Surveillance System (BRFSS) by gender and ethnicity and identifies disparities in
prevalence among middle-aged and older adults.

Web page on Social Determinants of Health and Alzheimer's Disease and Related Dementias.

The CDC's Alzheimer's Disease and Healthy Aging Program funds multiple organizations to implement
strategies to reduce disparities. The National Healthy Brain Initiative (NHBI) activities include creating
informational resources for the public, engaging state and local partners to adopt Road Map action
items, developing training materials for current and future professionals about ADRD, and
disseminating effective messages related to brain health. NHBI activities are expected to promote
brain health, address cognitive impairment including ADRD, and support the needs of caregivers
(unpaid persons providing care or assistance to someone with ADRD).

 

 

May 2022 ISSUE BRIEF 18
o National Healthy Brain Initiative (NHBI)--Component A Awardee.

=" CDC, in partnership with the Alzheimer's Association created the Healthy Brain Initiative
(HBI) Road Map series. The HBI Road Map series includes the "Healthy Brain Initiative
State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road
Map" and the "Road Map for Indian Country". HBI award recipients support populations
with a high burden of ADRD, to develop and implement public health strategies guided by
the HBI Road Map Series. The Road Map Series elevates ADRD, including caregiving, into
high public health priorities by leveraging data, educating the public health workforce, and
mobilizing adoption of impactful intervention by state and local public health departments
and American Indian/Alaska Native communities.

= Formed the HBI Collaborative to serve as a mechanism to foster collaboration among NHBI
and the BOLD Public Health Centers of Excellence awardees.

# Incollaboration with National Association of County and City Health Officials, awarded the
inaugural cohort of the HBI Road Map Strategists. The Road Map Strategist initiative is the
first nationwide effort to build local health department capacity to address cognitive
health and dementia. Eight local health departments were selected through a competitive
application process for the cohort.

= The Alzheimer's Association produces numerous newsletter articles to addressed SDOH or
health equity.

o National Healthy Brain Initiative (NHBI)--Component B Awardees.

# International Association for Indigenous Aging (IA7):

- Focuses on health equity and disparities in work with American Indians, Alaska
Native peoples, tribes, Tribal leadership, public health and health care staff, Urban
Indian Health Centers and organizations, and Tribal elder services advocates across
the country.

- Advances community engagement and helps build capacity among tribes--who are
recognized as sovereign entities--and Tribal member-serving organizations.

- Promotes healthy cognitive aging strategies across the lifespan, and fosters
dementia-capable Tribal communities

- lA is committed to gathering, creating, and distributing information and resources
developed by and for American Indian and Alaska Native communities to improve
the public health response to ADRD. These resources are available on their brain
health resource library.

- lA' is anational sublicensee for the Dementia Friends program. This license allows
tribes, urban Indian health organizations, and Alaska Native communities to receive
training and affiliate with IA? versus working with a state-based entity or are in
states with no Dementia Friends sublicense.

- lA? hosted multiple sessions and trainings on ADRD at the American Indian Elders
conference hosted by the National Indian Council on Aging.

=  UsAgainstAlzheimers. Increases visibility of the relationship of the SDOH, health
disparities, and AD. Conducts digital events focusing on partnership development
strategies. Digital events have been in partnership with minority-serving organizations and
platforms, such as Latino Nurses Network, LatinaStrong Foundation, and Diverse
Alzheimer's. Identifies resources and communications messages on brain health that are
culturally tailored to Black and Latino Americans and that recognize the SDOH's role in
shaping overall health. Held a virtual congressional briefing on July 20, 2021, titled "Brain
Health Equity and the Social Determinants of Health, Congressional Districts and
Alzheimer's Prevalence Among Communities of Color'.

o The BOLD Infrastructure for Alzheimer's Act includes the creation of ADRD Public Health Centers
of Excellence (The Centers). The Centers increase education of public health officials, health care

 

May 2022 ISSUE BRIEF 19
professionals, and the public on AD, brain health, and health disparities. The Centers provide
technical assistance to public health departments across the country in implementing effective
AD interventions. These interventions focus on priorities such as increasing early detection and
diagnosis, reducing risk, preventing avoidable hospitalizations, reducing health disparities,
supporting the needs of caregivers and supporting care planning for people living with the
disease. The BOLD Centers and Programs received their initial funding in October 2020 and,
despite delays due to COVID-19, have made significant progress. Sample of BOLD Program
Awardees' Activities:

The Northwest Portland Area Indian Health Board has worked with their member Tribal
health boards to create a first-ever draft of their comprehensive dementia plan.

Colorado developed an ADRD Advisory Committee (ADRDAC) to begin collaborating on
Colorado's long-term goals of enhancing access to and utilization of culturally relevant
services that support individuals with ADRD and their caregivers. The ADRDAC focused on
the development of the ADRD State Plan, including creating opportunities for expert
review, inclusion of community voice, with particular emphasis on Black/African American,
Hispanic/Latinx and American Indian/Alaska Native communities, and reflecting a cohesive
approach to ADRD in the state.

o BOLD Public Health Centers of Excellence Awardees.

Caregiving Public Health Center of Excellence (University of Minnesota): The BOLD Public
Health Center of Excellence for Dementia Caregiving's (PHCOE-DC's) primary mission is to
disseminate tools and promising practices to public health agencies (as well as other
organizations) to best support unpaid family members, friends, or others who provide care
to people living with dementia. The PHCOE-DC aims to support and provide technical
assistance and information to local, Tribal, and state public health agencies (such as Core
Capacity and Enhanced BOLD recipients) in their design, development, and
implementation of supporting systems, environments, and policies that elevate and
connect dementia caregiving programs, initiatives, and educational outreach. The PHCOE-
DC supports and initiates new public health strategies for dementia caregivers via three
activities: (1) provision of technical assistance to adopt dementia caregiving-related
communication approaches; (2) dissemination of various resources, including webinar
series, toolkits, and similar materials to educate and engage with public health agencies
and elevate unpaid dementia caregiving as a public health priority; and (3) serve as a nexus
to create connections and collaboration across the public health, aging service, and
research networks to advance dementia caregiving initiatives. Hosted a three-part webinar
series, Public Health Considerations and Models for Cultural Adaptations in Dementia
Caregiving, illustrating that dementia support and services are not adequately tailored to
meet the cultural needs of older adults and their caregivers, despite the projected rise in
the diversity of caregivers in the United States.

Early Detection Public Health Center of Excellence (New York University): The BOLD
Center of Excellence on Early Detection and Diagnosis brings together a broad coalition of
stakeholders across the United States to assure widespread awareness of why early
detection of dementia matters: Early detection is the first step on the pathway to high
quality, effective diagnosis and health care for people living with ADRD and those who care
for them. We assess and disseminate the best evidence supporting early detection and
how to accomplish it. Our national advisory group represents key state and county
departments of health, health care systems and primary care providers, community
organizations, and professional societies. We identify optimally effective materials and
marketing strategies for increasing awareness about cognitive impairment, the value of
earlier detection, and ways to best enact detection strategies; and disseminate them
through community-based and health care organizations and state, county, and Tribal

 

 

May 2022

ISSUE BRIEF 20
public health agencies. The Center works closely with public health agencies as key
partners in dissemination and seeks to establish collaborative linkages with health care
systems and their primary care providers to build strategies for post-detection diagnosis
and care. The PHCOE will employ strategies to advance health equity that include
expanding access to information by disseminating culturally relevant educational materials
on ADRD and healthy aging; identifying barriers and facilitators to early detection of
dementia across diverse stakeholders; generating solutions tailored to the needs of
various communities; and promoting integration of early detection of dementia into state
and regional public health initiatives, community service organizations, and health care
systems with a focus on populations experiencing disparities.

Centers for Medicare & Medicaid Services (CMS)

CMS has designed an interactive map, the Mapping Medicare Disparities (MMD) Tool, to identify areas
of disparities between subgroups of Medicare beneficiaries (e.g., racial and ethnic groups) in health
outcomes, utilization, and spending. The MMD Tool includes an AD condition option that can be
stratified by sex, race and ethnicity, and dual status at the county, state, and national levels.

CMS also released a Data Snapshot, Alzheimer's Disease Disparities in Medicare Fee-for-Service
Beneficiaries, which analyzes Medicare data on AD by race and ethnicity, age, sex, dual-eligibility for
Medicare and Medicaid, and geographic area.

 

Indian Health Services (IHS)

IHS collaborated with CDC in the development of infographics based on the BRFSS Data from American
Indian and Alaska Native adults addressing Caregiving Among American Indian/Alaska Native Adults,
Subjective Cognitive Decline Among American Indian/Alaska Native Adults and consulted on the
development of the "Healthy Brain Initiative Road Map for Indian Country".

National Institute on Aging (NIA)

To complement and support the National Strategy for Recruitment and Participation in Alzheimer's
and Related Dementias Clinical Research, NIA established the Alzheimer's and Dementia Outreach,
Recruitment, and Engagement platform in 2019. The platform is an online, searchable database of
materials that facilitates resource sharing on topics related to the engagement, recruitment, and
retention of participants in ADRD studies across diverse populations.

To provide researchers with practical and proactive approaches for engaging a wider, more diverse
range of research participants, NIA invests in a vast range of supportive resources, including the Why |
Participate in Alzheimer's Research video series, developed and released in 2019. This series is
designed to motivate individuals to volunteer for research by enabling them to hear members of
underrepresented communities describe their personal stories of why they chose to enroll in an AD
study.

NlA-supported ADRCs across the country provide important liaison and engagement between the
Centers and people with dementia, their caregivers and both the professional and local lay community
to augment participant and community engagement. For example, in collaboration with an ADRC
Latinx interest group, NIA developed a new landing page in 2020 as a portal to aging-related health
information content and information on participating in research in Spanish.

NIA's ADEAR Center educates the public about the latest research findings and provides evidence-
based information online and in print, as well as through its information and referral helpline, a weekly
email alert specifically on caregiving issues, and social media. ADEAR offers free information in English
and Spanish.

In 2020, NIA published and promoted the Brain Donation Social Media Toolkit to raise awareness
about brain donation and the importance of donations from diverse populations. The toolkit includes
flyers and social media messaging encouraging people to learn more about participating in a study that

 

May 2022 ISSUE BRIEF 21
involves donation or registering to donate through the NIH NeuroBioBank. Available in both English
and Spanish, the toolkit is already being used by the NIA-supported ADRCs and others to spread the
word about the importance of brain donation.

National Institute of Neurological Disorders and Stroke (NINDS)

The fourth Alzheimer's Disease-Related Dementia Summit, hosted by NINDS, took place in March
2022. As in previous years, one major area of focus was on health equity. Results from the Summit
included eight recommendations to guide future research priorities and investments.

In September 2021, NINDS hosted the Health Disparities and Inequities in Neurological Disorders
Workshop (HEADWAY), which brought together a diverse array of subject matter experts in various
disciplines from clinical and health services researchers, to implementation and behavioral scientists,
along with community stakeholders and patient advocates. Findings and recommendations from the
workshop will be placed on the NINDS website and used as resources for setting priorities and
developing initiatives over the next 5-10 years, including in the ADRD research space.

In February 2022, NINDS Director, Dr. Walter Koroshetz, and Director of the Office of Global Health
and Health Disparities, Dr. Richard Benson, co-authored an article in the journal Stroke titled "Health
Disparities: Research that Matters". They propose a call to action and outline current NIH programs
that aim to eliminate health disparities both broadly and in high priority areas, including the need to
diversify the research workforce and ongoing efforts and struggles to establish trust with
disadvantaged communities during the COVID-19 pandemic.

Beginning in February 2020, NINDS and the American Heart Association/American Stroke Association
annually host the "Health Equity and Actionable Disparities in Stroke: Understanding and Problem-
solving (HEADS-UP) Symposium." This multidisciplinary symposium focuses on cerebrovascular
disease, with the overarching goal of reducing disparities in stroke and consequences like vascular
cognitive impairment and dementia, and accelerating translation of research findings to improve
outcomes for disadvantaged socioeconomic groups, along with mentoring the next generation of
diverse health disparities investigators. The symposium also highlights an outstanding health
disparities researcher, by conferring the Edgar J. Kenton award. The speakers and faculty for this
symposium, present unique findings that are then written up and highlighted in the journal Stroke.

Risk Reduction

Administration for Community Living (ACL)

An important aspect of healthy aging is a healthy diet; however, many Americans of color experience
food insecurity. Older adults who are Mexican, Hispanic, and Black all report being food insecure at
much higher rates than White and Asian older adults." Through the OAA Nutrition Program, ACL's
Administration on Aging provides grants to states to help support nutrition services (home-delivered
and congregate meals) for older people throughout the country. Nutrition services provide an
opportunity to link to other supportive in-home and community-based supports from which older
people may benefit. Designed to promote the general health and well-being of older individuals, the
services address hunger, food insecurity and malnutrition of older adults; promote the health and well-
being, promoting healthy nutrition behaviors. The onset of COVID-19 highlighted the increased
nutritional needs of the nation's older adults, bringing hidden hunger and the needs of underserved
individuals into the spotlight.

Centers for Disease Control and Prevention (CDC)

BOLD Public Health Center of Excellence (PHCOE), Risk Reduction (Alzheimer's Association):
Alzheimer's Association's Public Health Center of Excellence on Dementia Risk Reduction provides
guidance on how public health can address the risk factors for cognitive decline and dementia. With

 

May 2022 ISSUE BRIEF 22
recent advancements in the science on dementia risk factors, we can now identify targets for public
health action. The PHCOE is convening a series of meetings review the state of the science and identify
points of intervention through reviewing, synthesizing, and summarizing the latest scientific evidence
on modifiable risk factors; identifying public health interventions and best practices that address the
risk factors; creating actionable tools, materials, and messaging for public health agencies to use in
addressing risk reduction; and working with public health agencies to implement risk reduction
interventions and best practices in their communities. The PHCOE emphasizes health equity and
SDOH-relevant factors to dementia risk reduction, for example by developing toolkits specific to the
issue of how public health can engage diverse communities in dementia risk reduction; developing a
plan on how public health can address SDOH related to dementia risk factors (first year) and begin
implementing that plan (second year); and ensuring community stakeholders representing diverse
communities participate in the Community Convenings and that health equity/social determinants of
health are considered in community-developed actions.

CDC collaborated with the NACDD to create a series of customizable educational rack cards on factors
related to risk reduction of dementia.

Centers for Medicare & Medicaid Services (CMS)

The Million Hearts® Cardiovascular Disease (CVD) Risk Reduction Model was a randomized controlled
trial that sought to bridge a gap in cardiovascular care by providing targeted incentives for health care
practitioners to engage in beneficiary CVD risk calculation and population-level risk management.
Instead of focusing on the individual components of risk, participating organizations engaged in risk
stratification across a beneficiary panel to identify those at highest risk for atherosclerotic
cardiovascular disease. The model performance period was January 3, 2017-December 31, 2021.
Effective for claims with dates of service on or after November 8, 2011, CMS began covering intensive
behavioral therapy for CVD (referred to below as a CVD risk reduction visit), which consists of the
following three components: encouraging aspirin use for the primary prevention of CVD when the
benefits outweigh the risks for men age 45-79 years and women 55-79 years; screening for high blood
pressure in adults age 18 years and older; and intensive behavioral counseling to promote a healthy
diet for adults with hyperlipidemia, hypertension, advancing age, and other known risk factors for
cardiovascular and diet-related chronic disease.
CMS expanded coverage of ambulatory blood pressure monitoring (ABPM) in July 2019. ABPM is a
non-invasive diagnostic test that uses a device to track blood pressure over 24-hour cycles, allowing a
doctor to assess a patient's blood pressure during routine daily living, instead of when they are sitting
nervously on an examination table. ABPM may measure blood pressure more accurately and lead to
the diagnosis of high blood pressure in patients who would not otherwise have been identified as
having the condition.
By way of the Quality Innovation Network-Quality Improvement Network, CMS targeted at-risk
beneficiaries to receive smoking cessation comprehensive education and resources including webinars,
newsletters, case studies, change packages, and other technical assistance materials to support to
support CVD prevention, improved health outcomes, and health care cost savings.

o Smoking and tobacco use cessation is also a covered benefit under Medicare. States can also use

Medicaid to cover tobacco use treatments.

Obesity screenings and behavioral therapies are covered under Medicare, and states may choose to
provide obesity-related services through Medicaid. States may also leverage Medicaid waivers to cover
services that support healthy aging and risk reduction, such as home-delivered meals and hearing aids
CMS continues to leverage expertise and access to valuable hypertension control resources including
periodic webinars targeting the establishment of hypertension, CVD, and stroke prevention programs;
community trainings on blood pressure control best practices to increase awareness and detection of
hypertension particularly with racial and ethnic minorities. One such resource is the CMS Data
Snapshot Hypertension Disparities in Medicare Fee-for-Service Beneficiaries.

 

May 2022 ISSUE BRIEF 23
Food and Drug Administration (FDA)

Hearing loss has been identified as a modifiable risk factor for ADRD, and recent research has
demonstrated that hearing aid use is associated with reduced dementia risk. Black and Hispanic
individuals who experience hearing loss use hearing aids at a lower rate than White individuals.77
While discriminatory health care practices may play a role in this disparity, the high cost of hearing aids
may also contribute to making them inaccessible to many individuals who could benefit. To address
this barrier, FDA recently issued a Proposed Rule to establish a new regulatory category for OTC
hearing aids and to make related amendments to update the regulatory framework for hearing aids.
Such action would entail defining OTC hearing aids and their requirements and amending existing rules
to be consistent with the new category. The Proposed Rule aims to foster innovation in hearing aid
technology. It would also improve access to hearing aids, as OTC options would likely be easier to
obtain and less expensive.

Hypertension has also been identified as a modifiable risk factor for ADRD. Research has found strong
evidence that hypertension control can reduce the risk of developing cognitive impairment, commonly
a precursor of ADRD. Hypertension is more common among Black, Hispanic, and Asian individuals than
among White individuals.2®"° Excess sodium intake can raise blood pressure and lead to hypertension.
At present, people living in the United States consume nearly 50% more than the recommended
amount of sodium per day. The majority of sodium consumed comes from processed, packaged, and
prepared foods, which makes it difficult to monitor and limit sodium intake. To address this, the FDA is
taking an iterative approach that includes establishing voluntary sodium targets for industry,
monitoring and evaluating progress, and engaging with stakeholders, in order to gradually reduce
sodium across the food supply, including processed and restaurant foods. The FDA issued the final
guidance with voluntary short-term targets for reducing sodium in commercially processed, packaged,
and prepared food over the next two and a half years. The approach supports sodium reduction efforts
already made by industry, provides common targets for defining and measuring progress, and provides
companies with the flexibility and time to meet these targets. The FDA expects to issue revised
subsequent targets in the next few years to facilitate a gradual, iterative process to reduce sodium
intake.

National Institute of Neurological Disorders and Stroke (NINDS)

First launched in 2015, NINDS's Mind Your Risks® is a health campaign to educate the public about the
importance of controlling blood pressure, especially during midlife, to help reduce the risk of having a
stroke and developing dementia later in life. NINDS launched a "reboot" of Mind Your Risks in May
2021, which now includes an even stronger focus on health equity: the primary target audience is
Black men ages 28-45, who are at particularly high risk of high blood pressure, stroke, and dementia
over the long term. New materials include an updated website, video, social media content, and
downloadable flyers. Next steps include strengthening messaging partnerships, especially with
community organizations and public stakeholders, and enhancing dissemination efforts.

Translations

Finally, a number of agencies have translated resources related to ADRD into other languages to ensure that
individuals with limited English proficiency can access information and programs they may need.

Centers for Disease Control and Prevention (CDC)

BRFSS Infographics and Spanish translations.
o CDC's Alzheimer's Disease and Healthy Aging Program created easy-to-use infographics in
English and Spanish that highlight national data on Subjective Cognitive Decline and Caregiving.
The data were compiled from CDC's BRFSS, 2015-2018 (combined).

 

May 2022 ISSUE BRIEF 24
© These infographics provide data for disproportionately affected populations: African Americans;
American Indian/Alaska Natives; Asian/Pacific Islander; Hispanic Adults; Women; LGBT; veterans;
and rural adults.

National Institute on Aging (NIA)

Through the Recruiting Older Adults into Research (ROAR) project, first launched in 2013, and in
partnership with other federal agencies, NIA collaborated with researchers and private organizations
to raise awareness, enhance knowledge, and connect gatekeepers and older adults with easy,
actionable opportunities for research participation. The ROAR toolkit includes customizable materials
for aging services and public health professionals to use in community settings and on social media in
English, Spanish, and Chinese. Since January 2015, the ROAR toolkit has been viewed more than
14,000 times.

In February 2021, NIA launched a re-designed Alzheimers.gov to serve as the federal portal for ADRD
content in English and Spanish for an increasingly diverse public audience. The new website features
easy-to-read, accessible information on dementias and living with dementia, including information for
researchers and community and public health workers. The site also links to NIA's online portal of
resources for clinicians, which includes updates on recent research findings; clinical practice tools for
assessment, diagnosis, and management of cognitive impairment; training materials; a patient
checklist handout in English and Spanish, and other resources. The Spanish version of the site launched
in October 2021.

NIA uses formative research and communication activities to enhance outreach to underrepresented
populations. In 2020, NIA used this approach to develop a set of materials, including videos, print ads,
posters, social media, and other multimedia messages, tailored to the Latinx community, in both
English and Spanish. A similar approach was used in 2019 to develop materials for African American
audiences. Additional formative research and communication activities to enhance outreach to other
underrepresented populations will continue to be conducted in subsequent years. Current plans
include developing clinical study recruitment materials and messages for Chinese Americans, Filipino
Americans, and Indian Americans in English and other languages.

Department of Veterans Affairs (VA)

The VA Caregiver Support Program provides Spanish language services to caregivers of veterans,
including those veterans with dementia, through a few avenues. The VA Caregiver Center located at
the Memphis VA Medical Center offers four group classes on self-care, either in-person or virtually:
Managing Stress, Problem Solving and Effective Communication, Taking Care of Yourself, and Utilizing
Technology. All materials for caregivers are in Spanish, including a Workbook for each class and other
materials, such as a relaxation CD. The Resources for Enhancing All Caregivers Health (REACH VA)
provides dementia-specific individual and telephone support group and caregiver interventions
offered at facilities in Spanish, with Spanish language Caregiver Notebooks. Additionally, the Peer
Support Mentoring Program within the Caregiver Support Program offers a series of four quarterly
telephone support group calls for Spanish-speaking caregivers, including those caring for veterans with
dementia. Calls cover various topics, including general information about the Caregiver Support
Program, Being a Caregiver During COVID-19, Dementia and Caregiving, and What It Means to be a
Caregiver.

 

May 2022 ISSUE BRIEF 25
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Thorpe, L.E. (2017). Racial and ethnic subgroup disparities in hypertension prevalence, New York City
Health and Nutrition Examination Survey, 2013-2014. Prev Chronic Dis, 14:160478.
doi:10.5888/pcd14.160478ix.

 

May 2022 ISSUE BRIEF 27
 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Office of the Assistant Secretary for Planning and Evaluation

200 Independence Avenue SW, Mailstop 447D
Washington, D.C. 20201

For more ASPE briefs and other publications, visit:
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ei
ABOUT THE AUTHORS
Emma Nye and Lauren Anderson work in the Office of Behavioral

Health, Disability, and Aging Policy in the Office of the Assistant
Secretary for Planning and Evaluation.

Helen Lamont, Ph.D., is Director of the Division of Disability and
Aging in the Office of Behavioral Health, Disability, and Aging
Policy in the Office of the Assistant Secretary for Planning and
Evaluation.

SUGGESTED CITATION

Nye, E., Lamont, H., Anderson, L. Federal Efforts to Address Racial
and Ethnic Disparities in Alzheimer's Disease and Related
Dementias (Issue Brief). Washington, DC: Office of the Assistant
Secretary for Planning and Evaluation, U.S. Department of Health
and Human Services. May 19, 2022.

COPYRIGHT INFORMATION

All material appearing in this report is in the public domain and
may be reproduced or copied without permission; citation as to
source, however, is appreciated.

 

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May 2022

ISSUE BRIEF

28