DMEJ
Duke Medical Ethics Journal
Racial and Ethnic Disparities in Alzheimer's disease and related dementia
By: Chenxinan Ma
I. Introduction
Dementia refers to the loss of cognitive functioning such as thinking, reasoning, or remembering that affects people’s daily activities [1]. Alzheimer’s disease is the most common type of dementia, which accounts for more than 60% of total dementia cases [2]. As many countries have witnessed the transition into an aging society, the burden of Alzheimer’s disease and related dementia (ADRD) has been dramatically increasing globally because age is the most important risk factor for ADRD [3]. Given the potentially tremendous burden of ADRD, achieving an early diagnosis of ADRD is of great importance because it allows earlier interventions to be delivered to slow down the development of ADRD by modifying the common risk factors [4]. Previous epidemiological studies reported that compared with non-Hispanic whites there was a higher prevalence of ADRD in the non-Hispanic Blacks and Hispanic population due to more ADRD risk factors such as genetic
*
factors and life experience [5–7]. Although there was a higher risk of ADRD in non-Hispanic Black and Hispanic populations, the research found that these populations were less likely to be diagnosed with this condition [8, 9]. Worse, even when non-Hispanic Black and Hispanic populations receive a formal diagnosis of ADRD, they have limited access to quality care [10, 11]. Therefore, in this paper, we plan to elaborate on the racial and ethnic disparities in the diagnosis and healthcare for patients with ADRD.
​
II. Racial and Ethnic Disparities in the diagnosis of ADRD
ADRD is diagnosed by neurologists, who make the diagnosis on the basis of the patient's medical history, physical examinations, cognitive performance tests, lab tests and brain imaging. Usually, the family members or caregivers of patients with ADRD can also report on some initial symptoms such as short-term memory, personality change, getting lost in a familiar place, and/or loss of concentration [12].
​
Why are marginalized racial and ethnic groups less likely to be diagnosed with ADRD? A systematic review of the past 30 years’ research on the perspectives of caregivers and patients with ADRD has identified a series of barriers and facilitators for the diagnosis of ADRD [13]. We presented these terms and definitions used in describing these common phenomena in ADRD (Table 1 Barriers and Table 2 Facilitators). These barriers and facilitators rarely occur independently, furthering the complexity of navigating the diagnosis of ADRD [13].
Table 1. Barriers Table 2. Facilitators
​
Source [13]​
​
Source [13]​
​
Due to these existing barriers, dementia is often underdiagnosed, especially among marginalized racial and ethnic groups [14]. In one cross-sectional study conducted in California, Asian, Black, and Latino participants were less likely than White to receive a diagnosis of incident mild cognitive impairment or dementia [15]. Non-Hispanic Blacks and Hispanics are also more likely to experience a missed or delayed diagnosis of dementia than Non-Hispanic whites [14]. Furthermore, due to the racial disparities in the diagnosis of ADRD, when many Non-Hispanic Blacks and Hispanics receive their first formal diagnosis of dementia, they are likely to already be in the severe stages of the disease [14]. Nevertheless, current research exploring the barriers and facilitators of the ADRD diagnosis pathway in underrepresented ethnic populations has been very limited so far and most available evidence lacks generalizability.
Moreover, what should be equally worth discussing is the marginalization of the elderly. Although numerous people around patients with ADRD might notice these above-mentioned signs and symptoms, they often just think these are normal when people get older, which is also known as “ageism” [16]. Ageism certainly affects the diagnosis of ADRD because close care partners or physicians deem these abnormal changes as “normal”.
Thus, a significant dissonance persists between racial/ethnic populations and what prevents racial minorities from accessing quality ADRD care. This difference could be partially explained by bias and discrimination in healthcare, which amplifies the racial and ethnic disparities in the field beyond diagnosing ADRD. In a report from the Alzheimer’s Association, the researchers found that compared with White older adults, Black, Latino, Asian, and Native American elderly are more likely to report having experienced racial discrimination when seeking healthcare services; these populations commonly mentioned that they felt like their healthcare providers did not take their responses into account, or treated them with less respect and courtesy than others [11, 18]. This unfair treatment and care could lead to worse health outcomes among racial and ethnic populations, which could then impair their quality of life. Thus, committed efforts are urgently needed to improve the quality of care for patients with ADRD.
​
Figure 1. Rates of discrimination when seeking healthcare across racial and ethnic groups
​
​
​
​
​
​
​
​
​
​
​
​
​
Data source: Special Report-More than normal aging: understanding mild cognitive impairment [11]
III. Racial and Ethnic Disparities in delivering quality care for patients with ADRD
Receiving a correct diagnosis is a very important first step in delivering quality care for patients with ADRD. Quality ADRD care requires a patient-centered focus, which is built around the needs of the patients living with ADRD, and entails the healthcare professionals to understand the unique needs of each individual [17]. Despite the fact that Hispanic and Non-Hispanic Black populations are at an increased risk for ADRD, they have limited access to quality care, and hardly any research on strategies about how to improve their unideal situation has been conducted [10].
*
IV. Conclusion and call for action
Specifically-adapted health interventions are of significant need to achieve equitable care for people living with ADRD across all racial and ethnic groups. These disparities highlight the need to develop inclusive policies that promote a patient-centered approach to ensure each racial and ethnic group could receive quality, appropriate ADRD care. To decrease the health disparities in ADRD, it is important to provide education on ADRD for both healthcare providers and care partners of patients with ADRD and increase the inclusion of racial and ethnic minority populations who are at increased risk of ADRD or have little access to care in many aspects of efforts in research.
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
​
*
**
**
Review Editor: Deven Gupta
Design Editor: Catie Fistoe*, Acelo Worku**
References
1. What Is Dementia? | CDC. 2019. https://www.cdc.gov/aging/dementia/index.html. Accessed 2 Oct 2022.
2. 2020 Alzheimer’s disease facts and figures. Alzheimers Dement. 2020;16:391–460.
3. Nichols E, Steinmetz JD, Vollset SE, Fukutaki K, Chalek J, Abd-Allah F, et al. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. Lancet Public Health. 2022;7:e105–25.
4. Rasmussen J, Langerman H. Alzheimer’s Disease – Why We Need Early Diagnosis. Degener Neurol Neuromuscul Dis. 2019;9:123–30.
5. Chen C, Zissimopoulos JM. Racial and ethnic differences in trends in dementia prevalence and risk factors in the United States. Alzheimers Dement Transl Res Clin Interv. 2018;4:510–20.
6. Rajan KB, Weuve J, Barnes LL, McAninch EA, Wilson RS, Evans DA. Population Estimate of People with Clinical AD and Mild Cognitive Impairment in the United States (2020–2060). Alzheimers Dement J Alzheimers Assoc. 2021;17:1966–75.
7. Alzheimer’s Disease Facts and Figures. Alzheimer’s Disease and Dementia. https://www.alz.org/alzheimers-dementia/facts-figures. Accessed 2 Oct 2022.
8. Gianattasio KZ, Prather C, Glymour MM, Ciarleglio A, Power MC. Racial disparities and temporal trends in dementia misdiagnosis risk in the United States. Alzheimers Dement Transl Res Clin Interv. 2019;5:891–8.
9. Amjad H, Roth DL, Sheehan OC, Lyketsos CG, Wolff JL, Samus QM. Underdiagnosis of Dementia: an Observational Study of Patterns in Diagnosis and Awareness in US Older Adults. J Gen Intern Med. 2018;33:1131–8.
10. Quiroz YT, Solis M, Aranda MP, Arbaje AI, Arroyo-Miranda M, Cabrera LY, et al. Addressing the disparities in dementia risk, early detection and care in Latino populations: Highlights from the second Latinos & Alzheimer’s Symposium. Alzheimers Dement. 2022;18:1677–86.
11. CDC. Baby Boomer Caregivers Report Poor Health. Centers for Disease Control and Prevention. 2021. https://www.cdc.gov/aging/publications/features/barriers-to-equity-in-alzheimers-dementia-care/index.html. Accessed 2 Oct 2022.
12. What Is Dementia? Alzheimer’s Disease and Dementia. https://alz.org/alzheimers-dementia/what-is-dementia. Accessed 2 Oct 2022.
13. Parker M, Barlow S, Hoe J, Aitken L. Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia. Int Psychogeriatr. 2020;32:611–34.
14. Lin P-J, Daly AT, Olchanski N, Cohen JT, Neumann PJ, Faul JD, et al. Dementia Diagnosis Disparities by Race and Ethnicity. Med Care. 2021;59:679–86.
15. Tsoy E, Kiekhofer RE, Guterman EL, Tee BL, Windon CC, Dorsman KA, et al. Assessment of Racial/Ethnic Disparities in Timeliness and Comprehensiveness of Dementia Diagnosis in California. JAMA Neurol. 2021;78:657–65.
16. Evans SC. Ageism and Dementia. In: Ayalon L, Tesch-Römer C, editors. Contemporary Perspectives on Ageism. Cham: Springer International Publishing; 2018. p. 263–75.
17. Quality of Care. Alzheimer’s Disease and Dementia. https://alz.org/professionals/public-health/public-health-topics/quality-of-care. Accessed 9 Oct 2022.
18. 2021 Alzheimer’s disease facts and figures. Alzheimers Dement J Alzheimers Assoc. 2021;17:327–406.