Health Disparities in Long-Term Care for People Living with Dementia


Racial and ethnic demographic changes in older adults are on a collision course with the increasing incidence and prevalence of dementia, which is greatly influenced by age demographic changes. Many individuals with dementia require assistance and care beyond what their family can provide. The most intensive and costly of all care options is long-term care. Determining the present and projected needs of a more diverse older adult population in long-term care is crucial when working to decrease health disparities.

Key Words:

long-term care, minority aging (race/ethnicity), health disparities, racial disparities


Aging in the United States and worldwide is changing. One evident change is the relative proportion of young adults compared to older adults. According to U.S Census Bureau information reviewed by the Population Reference Bureau, the number of Americans ages 65 and older is predicted to double from 52 million in 2018 to 95 million by 2060, increasing the relative percentage of older adults from 16% to 23% of the population (Mather, 2015). In addition, Population Reference Bureau figures indicate these older adults will be more racially and ethnically diverse, with the share of Non-Hispanic Whites dropping from 77% of the older adult population to 55%. The impact of this population change is growing more important to understand and address given the impact it will have on those available to work, the shifting ratio of Social Security contributors to beneficiaries, the increasing prevalence and incidence of chronic diseases, and many more issues.

One of the most concerning and impactful disease processes occurring in older adults is dementia. Dementia is a group of symptoms characterized by impairment in cognitive domains—memory, language, problem-solving, visuospatial ability, judgment, etc.—that significantly influences functional ability. The etiology of dementia comprises multifactorial neuropathological processes. The most common cause of dementia is Alzheimer’s disease (AD), accounting for 60% to 80% of cases (National Institutes of Health, 2021), and the most commonly known risk factor for Alzheimer’s disease, at this time, is age. However, many clinicians and researchers understand that vascular health, often reflected in risk of cardiovascular disease, is also mirrored in brain health. Alzheimer’s disease and related diseases, such as vascular dementia, have a significant impact on older adults’ ability to live independently.

Notably, there are established differences in the incidence and prevalence of vascular risk factors such as diabetes and hypertension in African Americans and Hispanic Americans when compared to Non-Hispanic Whites. In a study on the incidence of dementia by race and ethnicity among enrollees in the U.S. Veterans Health Administration (VHA), of the 13% receiving a diagnosis of dementia over 10.1 years of follow-up, the incidence of dementia was highest among African American and Hispanic enrollees, at 19.4% and 20.7%, respectively (Kornblith et al., 2022).

American Indian or Alaskan Native enrollees were close behind with an age-adjusted incidence per 1,000 person-years of 14.2%. This is even more concerning considering that the enrollees sampled were only 2% women. In a study by the Chicago Health and Aging Project (CHAP), the gender gap in clinical Alzheimer’s disease is predicted to widen over the next four decades, from 3.74 million in 2020 to 8.22 million in 2060 (Rajan et al., 2021).

According to projections, there will be anywhere from a 6.7% to 33.3 % increase between 2020 and 2025 in the number of Americans diagnosed with Alzheimer’s dementia living in the state in which you live (Alzheimer's Association, 2023). It is difficult to imagine demographic shifts in older adults that would not affect dementia incidence, prevalence, and care delivery. As such, addressing factors related to existing disparities may have an exponential effect on dementia diagnosis and care.

The National Institutes of Health (NIH) has called for increased representation of minorities in research studies. While this is a powerful statement on the commitment to addressing health disparities, many granular issues related to race and ethnicity are not yet addressed by the NIH requirements. Our concept of race and ethnicity is heavily influenced by our country’s history. For example, there is little data that distinguishes African Americans of Northern American slave origins, Caribbean/South American slave origins, or African immigrants. Also, Asians are grouped together despite the vast ethnic and cultural diversity that might affect disease incidence, prevalence, treatments, and services.

‘Studies indicate dementia-related health outcomes also can differ by race and ethnicity.’

In a study of Caribbean Hispanic and Black individuals participating in the Northern Manhattan Study, Hispanics and Blacks had a greater likelihood of Mild Cognitive Impairment (MCI) and dementia than White participants after accounting for age and educational differences (Wright et al., 2021). Tsoy and colleagues report that Asian, Black, or Hispanic individuals are less likely to receive a timely diagnosis. In addition, the diagnostic evaluation appeared to differ (Tsoy et al., 2021), with Asian beneficiaries receiving fewer diagnostic evaluation elements.

Studies indicate dementia-related health outcomes also can differ by race and ethnicity. Boltz and colleagues noted significantly lower physical function, increased delirium, and more depressive symptoms in hospitalized African American patients with dementia when compared to White individuals (Boltz et al., 2021). While these studies are useful, the findings reflect our current concepts of distinguishing race and ethnicity, and the monolithic assumptions that these categories are based upon leave out the likely and substantial heterogeneity occurring within these broad racial and ethnic categories.

Economic influences also play a part. A study using The National Health and Aging Trends Study regarding the socioeconomic impact of dementia noted higher income and higher education were associated with lower odds and financial strain with higher odds of dementia incidence (Samuel et al., 2020). The implications of these findings are concerning when considering existing socioeconomic disparities between different races and ethnicities. One domino effect consideration regarding non-institutional caregiving is that socioeconomically disadvantaged individuals are more likely to increase caregiver burden and strain on their families, which then may contribute to increasing risk for chronic illness, including dementia.

Trends in Dementia-related Long-term Care

Dementia care is increasingly available in long-term care settings. According to the National Center for Health Statistics, from 2017 to 2018 about 13.4% of nursing homes and 19.4% of residential care communities offered dementia care units (Sengupta, 2022). This is a change from the 2015 to 2016 statistics where 14.9% of nursing homes and 14.3% or residential care communities offered dementia care units within a larger facility or community (Harris-Kojetin L, 2019). An additional 6% of residential care communities serve only adults with dementia; this is down from 8.7% in prior statistics.

The choice of a long-term care facility can be a stressful endeavor for any family. There are significant financial concerns, guilt, and relinquishing of trust to strangers to care for someone who is dear to you and the possible cultural conflict of care provided outside of the family home. There are additional considerations for older ethnic and racial minority groups.

Nursing homes have largely been accessed by majority populations; however, changes in the demographic of utilizers have not been evolving with U.S. population demographics. From 2015–2016, Non-Hispanic Whites comprised 78.3% of the population and used 42% of adult day services, 76.1% of home health services, 83.6% of hospice services, 75.1% of nursing home services, and 81.4% of residential care community services (National Center for Health Statistics, 2019).

In nursing home care, African Americans made up 14.3%, Hispanics 5.4%, and Non-Hispanic Whites 74.6% of utilizers. These numbers are mostly in line with population percentages for people older than age 65, except for Hispanics, which comprise 7.7% of the population ages 65 years and older. From 2017–2018, Non-Hispanic Whites comprised 76.4% of the population ages 65 and older and used 44.8% of adult day services, 76.8% of home health services, 82.3% of hospice services, 73.9% of nursing home services, 79.9% of inpatient rehabilitation, 66.3% of long-term hospital and 89.4% of residential care community services (National Center for Health Statistics, 2019).

Consider the added burden of finding a residence where a loved one will receive linguistically congruent and culturally competent care. Although facilities that care for mostly Non-Hispanic Whites might be able to provide this care, distinguishing the unique needs of some residents can be a learning experience for the staff and some changes might be difficult to execute. This is an awfully tall order in most areas of the United States. Is the hurdle of cultural norms or culturally and linguistically competent care the roadblock for increasing racial and ethnic minority use? The under and overuse of these services compared to population numbers needs to be further evaluated.

‘Higher income and higher education were associated with lower odds and financial strain with higher odds of dementia incidence.’

Staffing for care associated with older adults is a challenge. The COVID-19 pandemic elucidated and exacerbated staffing in long-term care and caused an exponential increase in agency nursing to fill shortages. This is a significant financial strain for facilities and for the industry overall. One approach to providing culturally and linguistically competent care is to hire staff that reflects the population they are caring for; however, in the current climate of shortages, this is, understandably, not a priority.

The U.S. Bureau of Labor Statistics, 2021 Occupational and Employment and Wage Statistics (2021), indicates that home health aides and personal aids employed by nursing home facilities comprise the smallest percentage of employees in the industry at 4.43%. With increasing needs already discussed, this is incredibly concerning. Individual and family services appear to be the greatest employer by percent of industry employment at 62.4%.

A 2018 University of California at San Francisco study of the long-term care workforce using the 2015 American Community Survey found that Whites comprise 51.2%, African Americans 28%, Latinos 12.4 %, Asians 2.7%, and American Indians/Native Alaskans 0.6% of the workforce (Bates, Amah, & Coffman, 2018).

These numbers were compared with the overall U.S. population ages 85 and older and found significant disparities, over- and under-representation, with the greatest percentage difference being African Americans representing 7.1% of the population. This workforce study noted significant racial and ethnic representation differences between regions of the United States, with the Midwest having the largest White representation at 67.4%, the West with 24.4% Latino, 8.5% African American, and 5.9% Asian, and the South with 40.9% African Americans (Bates, Amah & Coffman, 2018).

When nursing home payer source and diagnosis were examined from 2017–2018, 62% have Medicaid as a payer source and 49.1% of nursing home service users have Alzheimer’s disease or related dementias. The dual eligible Medicare and Medicaid enrollees represent an especially vulnerable group and often are represented by a disproportionate percentage of racial and ethnic minorities. According to 2012 Medicare–Medicaid Enrollee Information, 19% had Alzheimer’s Disease or related Dementias (Centers for Medicare & Medicaid Services, 2022). A study of these dual eligible enrollees found they are concentrated in lower quality nursing homes, relative to those who are not on Medicaid (Sharma et al., 2020). Nursing homes that accept Medicaid payment also can increase the chances of the care being lower quality due to staff payment and retention and quality and quantity of recreation and services offered to residents.

Opportunities and Challenges

At present, nursing home resident ethnic demographics is roughly reflective of the U.S. population, with significant regional differences as mentioned previously. Some potential challenges include a slow drift away from this trend, as indicated from the differences noted by the National Center for Health Statistics (2019). Is this shift due to culturally affected paradigms of caregiving and ideas about long-term care, is it financially influenced, or is it a combination of all? The relative reasons that influence families to shift from home-based care to long-term care require further evaluation in anticipation of increasing numbers of older adults and demographic shifts within this age group. Views of nursing homes might influence many decisions.

However, it is difficult for home-based caregivers and family to provide the necessary consistent, cognitively stimulating activity and supervision necessary for those experiencing dementia. The cost of care must impact decisions as the share of Americans having long-term care insurance decreases, private pay expenses exceed $100,000 a year, and many individuals must use the Medicaid spend down to pay for nursing home services. The Medicaid spend down is an important program that makes care services available to those who would otherwise be unable to afford them. However, there are other outcomes. The need to “spend down” essentially denies the patient and their family the ability to establish any generational wealth, which can widen existing socioeconomic differences.

A study of 19 states’ Medicaid Analytic eXtract personal summary files found that among dual-eligible people ages 65 and older (Medicare and Medicaid) home-based and community-based services users, African Americans and Hispanics tended to stay longer in their communities until they require admission to a nursing home (Cai & Temkin-Greener, 2015). African Americans and Hispanics admitted to long-term care facilities were notably more impaired physically and cognitively as compared to Whites. These differences may suggest continued racial/ethnic disparities in access to quality nursing homes, an understanding of benefits, and cultural differences in long-term care preferences. Changes in Medicaid eligibility for long-term care benefits could have great impacts on living arrangements and care utilization patterns (Mommaerts, 2018).

‘It is difficult for home care and family to provide the necessary consistent, cognitively stimulating activity and supervision necessary for those experiencing dementia.’

People diagnosed with dementia often lose language proficiency, and the first language learned is not usually the first to go. Many individuals lose interest in food. Often favorite, culturally familiar or childhood foods can provide necessary incentives and boosts to their nutrition. The fact that as the population ages it is becoming more racially and ethnically diverse is an opportunity for nursing homes to provide more ethnically specific programs and experiences, including workforce recruitment and food preparation and delivery. In many areas with large concentrations of a certain ethnic group, adult day services offer programs where individuals can engage with others who have the same first language and cultural background and enjoy meals that include culturally familiar or sensitive foods (including vegetarian, kosher, and halal options). Moreover, in these contexts the staff’s ethnicity and language proficiency often mirrors that of those they serve. It is easier to provide this type of care in areas of the country with significant enclaves of certain ethnicities and cultures.

Standardized Approaches

One of the most important factors in addressing dementia care overall and specifically in nursing homes, is early detection of impairment. Long-term care facilities must recognize the challenges present in timely diagnosis of cognitive impairment in racially and ethnically diverse populations. Standardized approaches to screening and evaluation that do not require family or paid caregiver interpretation of signs and symptoms are essential. Diagnosis in the earliest stages, including of mild cognitive impairment, can give patients and their families the time and resources necessary to prepare for the changes ahead. Patients and their families can consider their resources, timing for long-term care, and ways they will pay for long-term care. It is important to have the time necessary to explore all available options when considering long-term care facilities. This planning is essential in obtaining the highest quality care available.

Nursing home residents should receive evaluations at regular intervals; I propose yearly screening and evaluation. This might involve attaining a translator for the assessment or referral outside of the facility if screening indicates a need for further evaluation or other sights supply translator assistance. Insurance coverage for translator services should be considered to improve timely evaluation and treatment of cognitive changes in older adults. This is akin to a public school system that cannot meet a student’s needs helping families with obtaining out-of-district education. Addressing cognitive and behavioral changes with cognitive stimulation and redirection involves training of all staff, not just staff of dementia care units. The racial and ethnic demographic shifts require acknowledging and addressing possible needs of residents who might respond to more ethnically and culturally specific activities.

Nursing homes with significant staffing and financial constraints might find the addition of culturally competent care more challenging, but inclusion of coverage for some services would beneficial. State and federal resources need to be made available for providing these services as the outcomes affect the entire country’s overall healthcare outcomes.

Intersection of Disparities, Cultural Competency, and Translational Science

The NIH is promoting racial and age diversity in research study subjects. Nursing home residents represent a unique population that might be challenging in terms of gaining consent to participate in a study. However, research studies offer an expedited opportunity for novel approaches to evaluation, treatment, and care delivery. Translational studies for cognitive stimulation, medication therapy, and behavioral treatment of those with ADRD need to include nursing home residents, if appropriate. Consideration of long-term care residents at both private pay and Medicaid facilities for such studies would increase socioeconomic, racial, ethnic, and cultural diversity to translational research.

The changing demographics of older adults represents a unique opportunity to transform care for this cohort. Many changes that might be necessary in long-term care appear daunting but will likely transform care and improve quality of life and outcomes. This article represents an overview of the initial step—identifying present and projected issues.

Lenise Cummings-Vaughn, MD, is an associate professor of Geriatrics and Nutritional Sciences, at the Washington University School of Medicine in St. Louis, and the medical director of the Stay Healthy Clinic and Outpatient program at Barnes Jewish Hospital, also in St. Louis.

Photo credit: Brian A. Jackson



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