Disparities in Alzheimer Disease and Alzheimer-Related Dementias: Considerations for Clinical Decision-Making and Treatment

In the United States, approximately 1 in 9 adults older than 65 has Alzheimer disease (AD).¹ With the increasing aging of the overall population, the proportion of individuals with AD or AD-related dementias (ADRD) also is expected to increase.¹ Of substantial concern is the disproportionate burden of the disease in some populations. Women and people of some races and ethnicities, such as Black and Hispanic individuals, are at increased risk of developing dementia.¹ Disparities in AD and ADRD risk, prevalence, and presentation span a broad range of dimensions, including age, sex, language, geography, socioeconomic status, disability status, and sexual identity and orientation.² A broad array of factors, also known as social determinants of health, are key drivers of these disparities. We discuss these and other factors that have considerable implications for the disproportionate disease burden across groups as key elements for clinicians to consider during clinical decision-making and treatment.

Built Environment and Neighborhood Factors

Environmental factors, such as where individuals live (eg, neighborhood, rural residence), influence exposure to risk factors, structural bias, and access to adequate health care services. These in turn influence health behaviors, determine the availability of resources and community-based support services that dictate care-seeking behaviors, and affect health outcomes among older adults at risk of or with ADRD.³ Access to adequate health care, long-term services, and social support play an essential role in the care recipients’ and caregivers’ experiences. Geographic location has been identified as a key determinant in equitable access to and utilization of health care services related to risk of ADRD⁴ as well as diagnostic and postdiagnostic care.⁵ Evaluation of the role of area deprivation in age-related cognitive decline, as measured by the area deprivation index, a geocoded disadvantage metric that integrates social determinants of health into models of cognitive aging, indicates that individuals in more disadvantaged neighborhoods demonstrated poorer performance on tests of cognition.⁶ Area deprivation also has been associated with greater risk of developing mild cognitive impairment and dementia.⁷ In addition, certain environmental risk factors associated with ADRD (eg, exposure to air pollutants and pesticides) have been linked to childhood as a result of living in rural areas.⁸ It is critical that geographic location of residence be considered when addressing health conditions associated with risks of ADRD throughout the lifespan as well as educating communities on the earliest signs of cognitive impairment to encourage seeking medical attention and treatment early.

Health Care System Factors

Factors related to health system barriers also correlated with limited and inadequate ADRD health care, including insurance and the type of coverage. Lack of insurance is associated with limited and delayed access to preventive services and treatment for chronic conditions (eg, cardiovascular disease and diabetes), which may increase the risk of developing ADRD.⁹ Different sources of coverage also influence access to care. For example, underrepresented groups only account for 25% of Medicare beneficiaries. In addition, among Medicare beneficiaries, Black and Hispanic beneficiaries are more likely to be Medicare or Medicaid dual-eligible or enrolled in Medicare Advantage, which may determine physician network and health services providers and additional out-of-pocket costs. Type of coverage, together with sociodemographic factors (eg, Black and Hispanic beneficiaries are more likely to have lower levels of education and per capita income), may contribute to delaying care because of cost-related barriers (eg, deductible and coinsurance affordability).¹⁰

Patterns of service utilization and resource availability have been linked to experiencing suboptimal care and unmet needs among older adults. Marginalized groups are less likely to have a usual source of care and access to a specialist but more likely to have higher rates of hospitalizations and emergency department visits.¹⁰ This is complicated further by disparities in the availability of resources based on income status (affordability of supplemental insurance vs not qualified for receiving government-supported care)¹¹ and residential segregation (lack of health-promotive resources).³ Therefore, consideration of insurance status, type of coverage, availability of resources, and individual economic resources as enabling factors or barriers is essential while delivering care to older adults with ADRD.

Several gaps in health care for older adults have been identified, including the fact that individuals with dementia were less likely to be informed of their dementia status.¹² Disclosure of a diagnosis of dementia historically has raised ethical and controversial discussion.¹³ Whereas 90% of adults report wanting to know the diagnosis,¹⁴ recent reports indicate that only 48% of neurology specialists and 35% of general practitioners routinely disclose dementia diagnoses to patients.¹⁵ Disclosure rates have been reported to be even lower in certain geographic locations (ie, rural)⁵ and for people who are members of certain racial and ethnic groups.¹⁶ Studies suggest that non-Hispanic Black individuals and Hispanic individuals have a higher rate of missed or delayed clinical dementia diagnosis compared with non-Hispanic White individuals and display poorer cognitive function and more functional limitations around the time of receiving a claims-based dementia diagnosis.¹⁶ In addition, examination of racial or ethnic differences surrounding knowledge of dementia status in the Health and Retirement Study suggests that a lower proportion of Hispanic and non-Hispanic Black individuals compared with non-Hispanic White individuals were informed of their dementia status by their physician. These groups also had lower awareness of dementia despite the higher prevalence of the disease in these populations.¹² Multiple barriers to communication of the diagnosis exist, such as clinician comfort, concerns for stigma, and concerns of familial reaction. Feelings of fear and beliefs that knowing would be of no use were identified as causes of patient-related reluctance to know of the diagnosis.¹⁷ These factors can be overcome to improve disclosure experiences through fostering relationships,^18,19 educating patients and family, and tailoring information delivery through a family-centered approach.²⁰

Sociocultural Factors

Culture influences ADRD perceptions, reports of symptoms, care-seeking behaviors, diagnosis, treatment, and caregiving.²¹ Individuals from some communities might consider cognitive decline as part of normal aging and delay seeking care.²¹ In some Hispanic cultures, AD may be perceived as a mental illness or psychologic disorder rather than a biologic condition and may carry social stigma and lead to a delay in seeking care.²² Cognitive assessment performance can be affected by cultural values and characteristics (eg, attitudes toward testing, familiarity with tests’ items and stimuli, language) and individual characteristics (eg, literacy level, educational attainment, quality of education).²³ These factors, along with differences in perceptions of cognition and everyday functioning (eg, Black family members are more likely to underreport cognitive and functional decline of their family members), might contribute to underdiagnosis or overdiagnosis, and affect a timely plan of care.^24,25

Cultural characteristics also are associated with attitudes toward ADRD diagnostic disclosure and plan of care.¹ In one study, members of the Black community were reported to prefer a holistic approach, focusing on education and mental and physical wellness; Hispanic individuals were more likely to seek answers, reassurance, and guidance (eg, lifestyle changes, disease progression, medications).¹ Regarding caregiving, cultural values influence behaviors such as seeking care from the medical system, use of support services, and coping mechanisms among caregivers. Black and Hispanic individuals are likely to prefer family involvement in diagnosis and plan of care and to provide more intense informal caregiving at home instead of seeking external care from the health care system or long-term services and supports.^1,11 These different culturally based perceptions need to be considered when assessing caregiving experiences in these populations.

Solutions and Future Directions

Individualized Care in Clinical Settings

Social determinants of health may contribute significantly to ADRD risk factors, timely diagnosis, and access to quality care. Although these barriers or enabling factors emerge outside the neurology practice, the opportunity exists for neurologists to ameliorate ADRD health disparities at the individual level. Addressing modifiable risk factors and incorporating patients’ demographics, family history, beliefs, and goals in their plan of care can promote the delivery of culturally tailored approaches. Examples of questions that can be helpful when assessing social determinants that may affect individual health outcomes are presented in Table 1. In addition, quality coordinated care, including ancillary health care workers such as nurse navigators and social workers, may help patients and families navigate the health care system and may improve resource coordination, such as with social support services (eg, support groups, respite care, adult daycare) and the application for drug cost subsidies for Medicare-Medicaid dual-eligible individuals. Additional strategies to address ADRD disparities are listed in Table 2.

System Level

Diversifying the Physician (Neurologist) Workforce. Black or Hispanic individuals comprise approximately 13% and 18% of the US population, respectively, but are underrepresented in medicine and in neurology in particular: only approximately 3% of US neurologists are Black and 7% are Hispanic.²⁶ A diverse neurology workforce that reflects the racial, ethnic, gender, sexual, religious, and cultural makeup of the community it serves will lead to more equitable health care and the amelioration of health care disparities. People will be more satisfied with their care and will be more likely to adhere to medical advice.²⁷

Possible solutions to the current lack of diversity in medicine include providing early exposure to neurology for underrepresented students from elementary through high school; mentorship of underrepresented precollege, college, and medical students to encourage pursuit of neurology; and continued mentorship of underrepresented individuals through residency and their neurology career.

Diversifying Clinical Research and Clinical Trials. Black and Hispanic individuals are underrepresented in clinical research and trials. Contributing factors may include a history of mistrust in the US health care system. Lack of diversity in clinical trials is an obstacle to understanding the safety and efficacy of novel therapies across racial and ethnic groups, which is crucial to reducing disparities.²⁸ Neurologists and neurology providers going into and reaching out to the communities they serve to provide education is imperative to recruitment of potential participants.

Acknowledging Opportunities for and Barriers to Telehealth. Telehealth has emerged as a crucial medium to provide medical care to underserved populations. However, whereas telehealth may eliminate the need for transportation to and from clinic visits, which is particularly useful in rural communities and communities where there is poor access to public transportation systems, disparities in communication access exist for some underserved groups. The digital divide remains a barrier to equitable health care. People from underserved communities have been shown to disproportionately lack access to the Internet and smart devices such as smartphones, computers, and tablets, and may be negatively affected by the costs to maintain these services.²⁹ One study showed that 82% of White, 58% of Black, and 57% of Hispanic individuals owned a desktop or laptop computer. That same study showed that although there were similar rates of cell phone use among people of all races and ethnicities, Black or Hispanic smartphone users, or smartphone users with lower income, were twice as likely as White smartphone users to cancel or discontinue cell phone services because of cost.³⁰ In addition, many telehealth platforms do not have features that are customized for people with hearing or vision impairment or for those with cognitive disabilities,³¹ many of whom are older or have ADRD.

In an effort to combat these disparities, health care professionals and insurance companies must meet with lawmakers and communicate the benefits of telehealth and urge them to pass laws to control the cost of Internet services and smart devices to allow for broader access.

Summary

Environmental and sociocultural factors affect adequate care access and delivery across the ADRD continuum. Although knowledge about the influence of social determinants of health has increased in the past decade, geographic location, recognition of structural racism and bias, and health system factors, together with social and cultural factors, need to be integrated into dementia care. Neurology practices can alleviate ADRD disparities at the individual level by delivering culturally tailored care and culturally competent approaches to address risk factors, increase health literacy, and promote protective health behaviors. System barriers, such as shortages of neurologists, particularly those from underrepresented groups, amplify health care disparities among older adults at risk of or with an ADRD diagnosis, especially in regions with a higher proportion of underrepresented populations and ADRD prevalence and incidence rates. Critical steps in ameliorating health care disparities at the system level lie in diversifying the physician workforce and increasing diversity in clinical research. These steps ultimately will facilitate the delivery of culturally competent care. Health care providers are tasked with recognizing and addressing structural barriers to the implementation and expansion of health care delivery systems—such as telehealth—for all individuals and the ADRD population in particular.