Late Dementia Diagnosis Among Elderly Minority Populations in the United States: Causes, Effects, and Addressing Inequities

INTRODUCTION

Aging is a natural biological process that affects all human beings. Characterized by time-related deterioration of physiological functions, aging predisposes the elderly to a myriad of health conditions including dementia. Dementia is a syndrome caused by conditions and other related disorders that over time, destroys nerve cells and damages the brain, causing a decline in cognitive ability that goes beyond the biological consequences associated with aging.^[1] Dementia involves the progressive loss of neurons and brain function due to the accumulation of abnormal proteins such as amyloid plaques and tau tangles in the brain, which can lead to neurodegeneration.^[2] While consciousness is not affected when one has dementia, there may be occasional changes in mood, emotional control, behavior, or motivation.^[1]

Dementia is a global health issue. It is currently the seventh leading cause of death worldwide, and one of the main causes of disability and dependency among the elderly.^[1] According to the World Health Organization (WHO), there are over 50 million people living with dementia globally, and this number is expected to triple by 2050.^[1] In the United States (US), an estimated seven million people aged 65 years and above had dementia in 2020. If current demographic and health trends continue, over nine million Americans could have dementia by 2030 and about 12 million by 2040.^[3]

Elderly minority populations in the US often have a missed dementia diagnosis or are diagnosed late for the condition. This has the tendency to worsen disability, reduce treatment effectiveness, impede timely care, and increase healthcare costs.^[4] The early detection and accurate diagnosis of dementia among the elderly is crucial because it can result in the prompt seeking of appropriate treatment, care, interventions, and support, and can also help the elderly plan ahead while they are still able to make important decisions about their health. Additionally, early detection of dementia can reduce the cost of care significantly and help the elderly to maintain cognitive health for a greater duration before the condition becomes severe.^[5]

We conducted an ecological study of the relationship between the causes, effects, and outcomes of late dementia diagnosis among minority populations in the US. We searched Google, PubMed, and Google Scholar, and reviewed 80 English articles related to late dementia diagnosis among minority populations in the US published from 2008 to 2024. We conducted our search using a combination of keywords including late dementia, dementia diagnosis, racial groups, inequities, and United States. Fifty articles met our study’s inclusion criteria.

INCIDENCE AND PREVALENCE OF DEMENTIA BY RACE

According to the Centers for Disease Control and Prevention (CDC), AD and other forms of dementia are increasing in prevalence.^[18] In 2023, an estimated 6.7 million Americans aged 65 and older were living with Alzheimer’s dementia, and about 73% of that population was 75 years or older.^[19] Also in 2023, approximately one in nine people (10.8%) aged 65 years and above had Alzheimer’s dementia. The disorder increased with age, with about 5.0% of people aged 65 to 74, 13.1% of people aged 75 to 84 years, and 33.3% of people aged 85 and older living with the disorder in the US.^[20] The cumulative incidence of dementia in the US by race and age, and how the curve for the racial groups begins to diverge around age 65 is shown in Figure 1.^[21] As a result of the increasing number of elderly people in the US, particularly those aged 85 and older, the annual number of new cases of AD and other dementias is projected to double by 2050.^[22] While studies on the prevalence of younger onset dementia in the US are limited, some researchers believe that about 110 of every 100,000 people aged 30–60 years, or better still, about 200,000 Americans, have younger-onset dementia.^[19]

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Figure 1:

Cumulative incidence of dementia by racial group. Source: Kornblith Race and ethnicity with incidence of dementia among older adults.

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Although White people account for majority of the over 5 million people in the US with AD, combined evidence from available studies show that African Americans and Hispanics are at higher risk.^[23] A study conducted by Kornblith et al. in 2022 on the association of race and ethnicity with the incidence of dementia among older adults in the US found that the incidence of dementia is highest among older Hispanics followed by African Americans, American Indians/Alaska Natives, and Asian Americans. The study also found that Whites had the lowest dementia incidence rate.^[21] Statistics from an epidemiology cohort study conducted by Potter et al. indicates that African Americans and Hispanics are about twice and 1.5 times as likely to have dementia respectively, compared to Whites of the same age.^[24] The CDC forecasts that by 2060, the dementia burden in the US will double, with four times as many cases occurring among African Americans and seven times as many among Hispanics.^[18]

Based on Pool et al.’s projections, between 2020 and 2025, every state across the US (excluding the District of Columbia) will have experienced an increase of at least 6.7% in the number of Americans aged 65 and older with Alzheimer’s dementia.^[25] The prevalence estimates for 2020 and 2025, and changes between these two years, are shown in Table 1.

CAUSES OF LATE DEMENTIA DIAGNOSIS

Some contributing factors to the late or missed diagnosis of dementia among minority populations in the US include the lack of patient and caregiver dementia awareness, inequities in access to care, socioeconomic factors, the administration of inappropriate dementia screening tests, and physician bias and educational needs.^[16] According to a 2014 Florida Department of Elder Affairs survey, over 75% of elderly people with dementia did not receive a dementia diagnosis until at least one year after their symptoms began. This was because of a lack of general awareness of the condition, the fact that some elderly people thought their symptoms were part of normal aging, and also because they thought nothing could be done about what they were experiencing. Based on the results of their study, Wackerbarth and Johnson revealed that caretakers of elderly minority populations in rural areas in the US, have lower levels of education and knowledge about dementia, contributing to delayed screening and diagnosis.^[28]

Inequities in access to health care due to the lack of health insurance coverage, proximity to a medical facility, mistrust of the system, racism, and a lack of diversity in the healthcare workforce also increases the risk of delayed or misdiagnosed dementia among elderly minority populations.^[29] In a primary care environment where provider–patient interactions tend to be brief and patients are not engaged in their care, early symptoms of dementia, such as memory impairment, can be missed during routine office visits.

The lack of access to health insurance due to socioeconomic factors makes it difficult for most elderly African Americans to seek dementia screening early, increasing medical and caregiving costs when they eventually get diagnosed. The estimated annual medical and caregiving cost associated with dementia based on data from the Health and Retirement Study, is about $20,000 higher for Hispanics and African Americans than for Whites.^[30] The ability of the US government to finance and deliver long-term care to patients with dementia is a challenge that policymakers are yet to address.^[17] While government efforts through the Centers for Medicare & Medicaid Services’ Program of All-Inclusive Care for the Elderly (PACE) are able to assist with some of the costs associated with dementia, they do not go far enough.^[31] While Medicare pays for time-limited care (typically for a few days per year) after a hospital stay or an acute episode, it does not cover long-term care.^[17] Private long-term care insurance does not help to fill in the gap, as about only 8% of Americans can afford such coverage.^[32] How elderly minorities living with dementia and their families finance the high costs of care are urgent issues that need to be addressed.^[30]

Studies have revealed that the tests used for dementia screening and diagnosis in clinical settings are less accurate for racial minorities. According to Mast et al. and Wood et al. the Mini-Mental Status Exam (MMSE) commonly used for minority populations has lower specificity and thus, often leads to the overdiagnosis of dementia among African Americans.^[33,34] In their study on racial differences in the recognition of cognitive dysfunction in older persons, Rovner et al. indicated that the cognitive tests used for dementia diagnosis was unsuitable for minority populations. They found that caregivers of African American patients reported lower degrees of cognitive decline after completing the Informant Questionnaire for Cognitive Decline in the Elderly (IQCODE), than the caregivers of White patients with similar impairments, which to them, contributed to dementia underdiagnosis.^[35]

Per some researchers, the late diagnosis of dementia among the elderly is due to the lack of physician education about the disease, specifically physician ability to distinguish cognitive changes that are normal to aging from the symptoms of dementia, as well as physician concerns about the consequences of a dementia misdiagnosis on patients and their families.^[36] Based on their study on dementia diagnosis and specialty care among racially diverse Medicare beneficiaries, Lin et al. stated that although most seniors (>92%) with probable dementia in their study sample had seen a doctor in the last two years (with an average of 13 visits), African Americans and Hispanics had the lowest Medicare annual wellness visits.^[12] Also emphasizing the role of race, Drabo et al. reported that underrepresented racial groups were less likely to receive follow-up care by dementia specialists (e.g., neurologists and psychiatrists) after receiving a clinical diagnosis.^[37]

EFFECTS OF LATE DEMENTIA DIAGNOSIS ON THE ELDERLY

A study conducted by Clark et al. revealed that due to the delays in dementia diagnosis among African Americans in the US, the time between the onset of dementia symptoms and diagnosis is about seven years, allowing the disease to significantly progress among this population before care and treatment are sought.^[38]

Late dementia diagnosis has been linked to the inability of the elderly to perform basic daily tasks such as eating, bathing, or getting dressed. It also causes a loss in the ability to communicate, characterized by incoherent speech and the inability to understand speech. In their systematic review of cognitive impairment, Jekel et al. found that the decline in cognitive function in dementia patients is often marked by severe memory loss, confusion, and impaired judgment. Consequently, patients struggle with recognizing familiar faces, places, and objects.^[39] Mitchell et al. also found that patients with dementia experience a steady decline in motor function, which sometimes leads to challenges with movement, balance, coordination, and a heightened risk for falls and injuries.^[40]

In addition to cognitive and physical impairments, late dementia diagnosis can have significant emotional and psychological effects on those impacted. In their study on behavioral disturbances in geropsychiatric inpatients with dementia, Kunik et al. observed that restlessness, aggression, and depression were typical symptoms among individuals with late-stage dementia, and that the symptoms made it difficult for caregivers to provide adequate care and support.^[41] Schulz et al. reported that caregivers of individuals with late-stage dementia have high levels of stress, anxiety, and depression.^[42] According to McCurry et al. (2017), patients with late dementia diagnosis often experience disrupted sleep patterns including insomnia, fragmented sleep, and excessive daytime sleepiness, which exacerbate cognitive decline and contribute to negative behavioral issues.^[43]

The late diagnosis of dementia can also lead to increased healthcare costs. In the US, most African Americans and Hispanics are typically diagnosed during the later stages of dementia, causing them to utilize more hospital, physician, and home health services, and to incur higher financial burdens compared to Whites who are often diagnosed early. In 2014, the average per-person Medicare payment for African Americans with AD and other dementias was 35% higher than for Whites with AD and was 7% higher for Hispanics than for Whites.^[23] In 2022, the total per person healthcare cost and long-term care cost from all sources for Medicare beneficiaries with AD or other dementias, was about three times ($43,444) that of Medicare beneficiaries in the same age group not living with AD or other dementias ($14,593). Irrespective of Medicare and other sources of financial assistance in the US, individuals with AD and other dementias, have to deal with high out-of-pocket costs such as deductibles, copayments, and coinsurance for services not covered by Medicare.^[19] In 2023, among Medicare beneficiaries with Alzheimer’s or other dementias, African Americans had the highest unadjusted Medicare payments per person per year, while White beneficiaries had the lowest payments ($27,814 vs. $22,306 respectively) [Table 2]. The highest difference in service payment was for hospital care, with African American Medicare beneficiaries incurring 1.6 times in cost ($9,006) than White beneficiaries ($5,791).^[44] This economic burden highlights the importance of prioritizing minority populations at risk for early dementia screening and diagnosis.^[45] Missed or delayed dementia diagnosis creates lost opportunities for treatment, which can lead to a more advanced form of the condition, and sometimes death.^[12]

CONCLUSION AND IMPLICATIONS FOR TRANSLATION

The timely and accurate diagnosis of dementia among minority elderly populations in the US is highly important as it can cause this population to save on long-term care costs,^[48] obtain prompt and effective care and treatment for potentially reversible causes, and have adequate time with their families to plan for their future care. The timely and accurate diagnosis of dementia among minority elderly populations in the US will also provide opportunities for this population to participate in clinical trials, which may slow down the progression of their symptoms.^[14,50]