Disparities in Dementia Care

How can we learn and support change?

What Is a Health Disparity?

A health disparity occurs when a group of people experience a higher exposure to risk factors and/or higher rates of illness, injury, disability, or death than other groups.

Health disparities can have a profound, negative effect on public health in the United States, entire populations and its individual communities. Dementia care and support services can vary widely depending on race, ethnicity, geography, and socioeconomic and political  factors. The ability for a person to get a timely diagnosis, manage the disease, and be able to access quality health care contributes to health disparities in dementia.

These disparities reach beyond clinical care to include underrepresentation of Black, Hispanic, Asian, and Native Americans in Alzheimer’s and dementia research in clinical trials. The Alzheimer’s Association’s Special Report, “Race, Ethnicity and Alzheimer’s in America,” found some very alarming trends around dementia care and treatment.

The surveys show that among non-White caregivers, half or more say they have also faced discrimination when navigating health care settings for their care recipient. Their top concern being that providers or staff do not listen to what they are saying because of their race, color, or ethnicity. This concern was especially high among Black caregivers (42%), followed by Native American (31%), Asian American (30%), and Hispanic (28%) caregivers. Fewer than 1 in 5 White caregivers (17%) expressed this view.

Underserved Populations Desire Health Care Providers Who Understand Their Ethnic or Racial Background.

Given their own experiences with discrimination, it is not surprising that non-White racial/ethnic populations feel it is important for Alzheimer’s and dementia care providers to be more culturally competent. This might extend to having the necessary humility to really hear patients and their symptoms. Responses from surveys indicate a strong desire for dementia health care providers who understand different racial and ethnic backgrounds, but many survey respondents say access to these providers is lacking.

As shown in the graphic from the Alzheimer’s Association Special Report, 92% of Native Americans say they want dementia health care providers who understand their ethnic background, yet only 47% have confidence they currently have access to them. Black Americans, Hispanic Americans, and Asian Americans felt similar.

The report from the Alzheimer’s Association also finds that non-white racial/ethnic populations expect and experience more barriers when accessing dementia care and report having less trust in medical research than white Americans. These findings were gleaned from 2 national surveys conducted by the Alzheimer’s Association in 2020. One survey included nearly 2,500 U.S. adults aged 18 and older; the second was a survey of more than 1,300 U.S. adults who were current or recent unpaid caregivers for an adult relative or friend age 50 or older experiencing problems with thinking, understanding or remembering things.

Half or more of non-white caregivers say they have experienced discrimination when navigating health care settings for their care recipient, the study reports. The top concern expressed was that health care professionals or staff do not listen to what they are saying because of their race, color or ethnicity.

COVID brought a new piece to the puzzle of care in 2020 which led to 16% increase in deaths from Alzheimer’s and other dementias. The lack of care, ability to visit and support led to these factors.

Other findings from the surveys highlighted in the report includes:

• Two-thirds of Black Americans (66%) believe their race/ethnicity makes it harder for them to get quality care for Alzheimer’s disease or other dementias. That concern was also expressed by 40% of Native Americans, 39% of Hispanic Americans, and 34% of Asian Americans.
• Fewer than half of Black (48%) and Native Americans (47%) feel confident they have access to healthcare professionals who understand their ethnic or racial background and experiences.
• Concern about developing Alzheimer’s is lower among Native Americans (25%), Blacks (35%) and Hispanics (41%) compared with whites (48%).
• Hispanic, Black and Native Americans are twice as likely as white people to say they would not see a doctor if experiencing thinking or memory problems.
• Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%), Hispanic Americans (36%), White Americans (31%).
• Only half of Black Americans (53%) trust that future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.

It was also reported that Black people and Hispanics are disproportionately more likely to have Alzheimer’s and other dementias, and more likely to have missed diagnoses, than older Whites. Health and socioeconomic disparities and systemic racism contribute to this increased risk in communities of color. It was also found that many non-white Americans say they have experienced discrimination seeking care in the broader healthcare system, including half of Black Americans, 42% of Native Americans, and about one-third of Asian Americans and Hispanic Americans.

The growth and increasing diversity of the US older adult population in the coming decades requires healthcare providers, researchers, and educators to dedicate more resources to underserved, disproportionately affected populations. There are many unknowns about Alzheimer and other dementia, most especially among non-white racial/ethnic populations. Research, clinical care, and education must focus on outreach to marginalized, underserved communities so we may better be able to diagnose and treat the fastest growing older adult populations in the US. A complex combination of environmental, sociocultural, behavioral and biological factors likely contributes to delayed diagnosis and care of these groups, as well as lack of access to medical care, research venues, and trust issues between ethnoracial groups and the medical establishment. We all have a moral and professional obligation to acknowledge these disparities and to pursue equity by eliciting the support of community organizations and decision makers to raise awareness and dedicate necessary resources to intervene on this fundamental threat to the nation’s public health.

Ways we can help address health disparities and pursue equity for dementia care:

Preparing the workforce to care for a racially and ethnically diverse older adult population.

• This includes cultural competence education, and training providers to recognize and overcome implicit bias. (See sidebar: Elements of Cultural Competence)
• Increasing representation among providers for dementia care. Currently, only 1 in 3 US physicians are Black, American Indian or Alaska Native, Hispanic, or Asian. Primary care is more diverse with approximately 40% of physicians coming from diverse racial and ethnic backgrounds. Ensuring diversity in these frontline providers may help reduce future disparities in dementia care. Developing a workforce that reflects the demographics of individuals with Alzheimer’s disease or other dementias should begin during outreach and recruitment to training programs, continue with programming designed to support racially and ethnically diverse students during their training years, and extend to offering residency opportunities in health care settings that treat non-White racial/ethnic populations. In addition, hiring practices should consider diversity, equity and inclusion to meet the needs of local patient populations and their communities.

Engaging, recruiting, and retaining representative populations in Alzheimer’s research and clinical trials.

There are several challenges that currently hinder efforts to increase diverse participation in clinical trials, including:

• Mistrust of the medical and research community – Past bioethical injustices, including in medical experiments, have created stigma for some populations around participating in clinical trials.
• Costs – While the costs of study drugs, tests and procedures are typically covered during a clinical trial – there are “hidden costs” including transportation, taking time off work and, in some cases, lodging. These additional costs can create additional barriers for lower-income participants.
• Access and awareness – There is also less awareness about clinical trials among underrepresented populations. Lack of access to health care reduces ongoing communication between minority populations and their physicians – limiting referrals to appropriate clinical trials.

We must continue to work to understand and ultimately eliminate these obstacles to clinical study participation.

How are clinical study trial participants recruited or determined - historically and now?

Recruitment for clinical trials are done in various ways. Physician referrals play an important role, but more traditional consumer media is also used such as TV, radio and billboard advertisements -- even social media is starting to be used. University and health care systems that are overseeing a clinical trial will often engage in community outreach to recruit eligible participants.

Eligibility for a clinical trial is also important. Before joining a clinical trial, an individual must qualify for the study. All clinical trials have guidelines about who can participate. Researchers define these guidelines as inclusion and exclusion criteria. Examples of these criteria include:

• Limiting participants to a certain age range.
• Requiring participants to be in a certain stage of the disease being studied.
• Not allowing health conditions other than the one being studied.
• Not permitting use of certain medications other than the study drug.
• Requiring participation of a caregiver or “study partner.”

To help facilitate participation in active trials, the Alzheimer’s Association created TrialMatch – a free, easy-to-use clinical studies matching service that generates customized lists of studies based on user-provided information. You can easily see what studies may be a fit for you or a family member and decide to pursue any if you wish.

While some Alzheimer’s studies involve drugs and physical tests, others involve observation and questionnaires. Studies range from treatment trials, to diagnostic studies, to prevention trials and quality of life studies.

Why is representation in clinical trials important? Do drugs and treatments work differently depending on race/ethnicity?

It’s critical that participants in clinical trials are representative of the broader population -- the full population that is affected by, and at risk for, the disease. Without appropriate participation by African Americans, Hispanics/Latinos and other population groups in Alzheimer’s trials, it is impossible to get a complete understanding of how racial and ethnic differences may affect efficacy and safety.

• It's critical that clinical trials are reflective of the population they seek to serve. Without appropriate participation by minority populations -- it's impossible to get a complete understanding of racial and ethnic differences affect efficacy and safety.

Currently, non-White racial/ethnic participation in Alzheimer’s clinical trials is less than 10%. This is consistent with clinical trials looking at other diseases – where non-White racial/ethnic populations are also underrepresented. We need to continue to explore new approaches and new strategies for increasing representative participation in clinical trials, observational studies and other investigations so everyone benefits from advances in Alzheimer’s and all other dementia research.

Discuss efforts to increase support and education for African-Americans and other racial and ethnic groups about Alzheimer's and engage them in efforts against the disease, including research.

The Alzheimer’s Association is leveraging partnerships with several community-based groups to better reach African Americans and the Hispanic/Latinos.

The Association is working with the African Methodist Episcopal Church (AME) which has more than 2 million members across the country -- to provide the community with important information about Alzheimer's detection, diagnosis, care, treatment, research and advocacy, including:

• Increasing concern and awareness of Alzheimer's within AME's community.
• Providing care and support programming, and volunteer engagement and training, to AME members.
• Expanding opportunities for AME community members to participate in research and encourage clinical trial participation.

The Association is excited about our collaboration with the Mexican Consulate and their Ventanilla de Salud (VDS) program. This program provides reliable information on health topics, counseling and referrals to health services available in local communities. It will be implemented through 50 Mexican consulates in the U.S. and local health organizations.

The Association is also engaged with the National Hispanic Council on Aging (NHCOA) to reach the Latino community with important information relating to Alzheimer's detection, diagnosis, care, treatment, research and advocacy. We have collaborated to create tools for their Promotores, who are their Community Health Workers.

(In the Hispanic/Latino community, promotores are recognized as trusted laypeople who provide health education and outreach services to the community. The Association, together with NHCOA, encourages Alzheimer’s Association chapters to recruit promotores as volunteers who play a valuable role in extending the reach of the Association in Hispanic/Latino communities.)

Some resources to help you through the journey of dementia:

A Toolkit for the aging community: Serving African American Families

A Toolkit for the aging community: Serving Hispanic Families

Healthy Brain Initiative: Road Map for Indian Country

The Alzheimer’s Association also offers disease-related information and resources for underserved and underrepresented populations on its pages.

Authors

Carl V. Hill, Ph.D., M.P.H., Chief Diversity, Equity and Inclusion Officer, Alzheimer's Association 

Melissa Long, CTRS, CDP, CADDCT, BF-CMT, Director of Education and Support, Insight Memory Care Center