COVID-19 has re-taught our nation a lesson about how often the burden of a disease is not borne equitably among various racial and ethnic groups. We now know that African-Americans and Latinos are three times more likely than their Caucasian neighbors to contract COVID-19 and twice as likely to die from the virus. Sometimes disparities are biological; for example, a genetic disease might affect one group differently than another if they express the affected gene more or less often. But when it comes to a tiny, deadly, opportunistic virus ravaging our land, most of those disparities are not genetic. They are caused by other, systemic challenges that these communities face in healthcare, with things like access, insurance, and resources.
Racial and ethnic disparities exist in the diagnosis, treatment, and outcomes of dementia as well. We need to understand and shed light on the disparities between Caucasian and African-American and Latino populations when it comes to dementia if we hope to serve them as the burden of dementia and Alzheimer’s Disease increases over the several decades.
The Dementia Divide
Lines and Wiener (2014) published a review that revealed consistent and significant differences in the incidence of dementia in the U.S., its treatment, and mortality across white people compared with African-American and Hispanic people. African-Americans were more likely to have cognitive impairment at all ages above 55 years, but less likely to have received a formal diagnosis of dementia or Alzheimer’s Disease, to have been treated with dementia medications, or have dementia listed as a cause of death after their passing.
Chen and Zissimopoulos conducted a twelve-year study examining dementia in racial and ethnic groups of Americans over-65. They found that African-Americans and Hispanics were twice and 1.5 times, respectively, as likely to get dementia as their white counterparts. The study also established a positive correlation between the risk of dementia and the level of one’s affluence and education.
The relationship between the degree of education and the risk of dementia is supported by a concept developed in the ‘80s, known as the cognitive reserve hypothesis wherein autopsies of individuals utterly devoid of any symptoms of dementia in life revealed brain changes consistent with dementia. The thought is that an individual who’s attained a high degree of education and continued to actively learn throughout mid- and later-life, develops a mental reserve that equips the brain to better cope with neurological deficits. Subsequent studies demonstrate that, indeed, lifelong learning correlates with a lower risk of developing dementia.
Chen and Zissimopoulos wisely alluded to the multi-layered nature of ethnic and racial disparities in dementia. Socioeconomic, environmental, and cultural factors determine an individual’s access to quality education, types of employment, and quality health care too. Practitioners need to remain culturally conscious of these factors because many groups are highly suspicious of medical professionals or of medicine itself. Acknowledging cultural norms is a good first step, but we must go deeper and assess the causes of such beliefs in each individual patient.
Challenges of Dementia in Underserved Communities
Dementia is a multi-year, even multi-decade disease, so those same contributing factors to socioeconomic and racial inequities that we see in COVID-19 will have significant long-term consequences on individuals with dementia, their families, and caregivers too. I’ve seen many families struggle with dementia and caregiving, and while no two cultures or people are exactly alike, some trends seem consistent:
- African-American, Hispanic, and immigrant households are often multi-generational, rely heavily on the extended family for care, have a profound sense of duty, and are often more deeply religious or spiritual than their white counterparts. These positive familial attributes may close caregiving gaps and result in a more positive view of caregiving, but with that come trade-offs that families often have to make. Younger family members may sacrifice higher education or trade school because they become the caregiver, or they become responsible for raising their younger siblings.
- Communities of color struggling with poverty don’t have the luxury of family members staying home to be an unpaid caregiver all the time. This is exacerbated where incarceration rates are high. People with advanced dementia may spend longer periods alone than in other communities where there are more resources.
- Not all communities experience caregiving the same way. African-American Alzheimer’s caregivers often report more robust social support than white caregivers, while Asian and Hispanic caregivers often report more depressive symptoms. But the healthcare community’s dementia support, outreach and training are typically one-size-fits-all.
- Communities with lower wages and/or service jobs often lack comprehensive insurance or face steep out-of-pocket expenses. This can lead to disruptions in access to health care and prescription medications, something practitioners need to be mindful of when they recommend new therapies. Patients who need to cut pills in half for economic reasons will rarely tell their doctors about that.
- People’s views of dementia itself are also varied: African-Americans and Hispanics are more likely to consider dementia a natural part of getting old and are more optimistic than whites about treatment for dementia in the future.
According to the Alzheimer’s Association, 16-million U.S. family members are unpaid caregivers to their loved ones with dementia, and by 2030, 28% of the over-65 population will be African-Americans and Latinos (The Administration for Community Living’s 2016 Profile of Older Americans). What can the health care ecosystem do to overcome these challenges and at least narrow the gap that ethnic and racial disparities in dementia have created?
For Health Care Providers:
- Let them know you understand: Acknowledge the difficulties that less-advantaged families face when it comes to caring for their loved one with dementia at home.
- Learn about their expectations: Explore those differences in cultural expectations around dementia, caregiving, decision-making, and end-of-life care preferences.
- Meet dementia patients where they are: Dementia doesn’t happen at home in a vacuum; it happens at home, at church, and at the community center. Coalitions between health care and community-based organizations are crucial to educating the public.
- Use interdisciplinary community-based teams: Social workers, nurses, therapists, and pharmacists, together, provide the ancillary needs of patients, caregivers, and families. Leverage a diverse team, some of whom are bilingual and bicultural, to knock down language and cultural barriers to provide well-rounded and much-needed support for people whose default in life is struggle.
For the Public:
- Diagnostic Testing: Access to diagnostic testing is key to teasing out dementia from depression, delirium, and other disorders.
- Medications: Patients must have access to prescription medication and pharmacy services for treatments that are likely to achieve results. Insurance is essential for the latest therapeutics, which are always expensive.
Whether it’s COVID-19 or dementia, inequalities fueled by differences in race and socioeconomics are a broad, complex, and sensitive topic, more so in today’s present climate. The easy thing to do is to turn the other way because tackling these types of issues is hard. John F. Kennedy’s words ring true, whether we are caring for our nation’s citizens with COVID-19 or we are pushing back on disparities in dementia care: “We do these things not because they are easy, but because they are hard.”
National Center for Biotechnology Information, U.S. National Library of Medicine, Alzheimer’s & Dementia, “Racial and Ethnic Differences in Trends in Dementia Prevalence and Risk Factors in the United States,” Cynthia Chen, Julie Zissimopoulos, August 2018
National Center for Biotechnology Information, U.S. National Library of Medicine, “The Cognitive Reserve Hypothesis: A Longitudinal Examination of Age-Associated Declines in Reasoning and Processing Speed, Elliot Tucker-Drob, Kathy Johnson, Richard Jones
Valenzuela, M. J., & Sachdev, P. (2006). Brain reserve and dementia: a systematic review. Psychological medicine, 36(4), 441–454.
American Journal of Alzheimer’s Disease & Other Dementias, “Developing Culturally Sensitive Dementia Caregiver Interventions: Are We There Yet?” Anna Napoles, Letha Chadiha, Rani Eversley, and Gina Moreno-John, 2010
The contents and information on DementiaSpring.Org are for educational purposes only and is not intended to substitute for medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
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