Op-ed: It’s Time to Make Dementia Patients and Their Caregivers COVID19 Priorities
The co-authors of this piece are listed below the article.
There’s a hidden crisis playing out in the shadows of COVID-19. It is one of many insidious injustices that have long plagued Black and Latino communities and families: dementia. New research finds that Black Americans with dementia are nearly three times as likely as White people to become infected with COVID-19.
The time is long overdue for our public health actions to make abundantly clear that people with dementia and the many caregivers who love them are not disposable.
The inability of state and federal public health leadership to prioritize our most vulnerable citizens in its response to the COVID-19 pandemic is widening deeply entrenched brain health inequities: Eighty percent of COVID-19 deaths in the US have been adults 65 and over, with a disproportionate number of those deaths associated with people living with dementia.
Black Americans are two to three times more likely and Latinos almost twice as likely to develop Alzheimer’s and related dementias compared to non-Latino Whites, numbers commensurate with the US’s racial disparities of COVID-19 cases. Both public health challenges are exacerbated by systemic racism and exclusionary healthcare practices and enabled by social inequities that prey on poor people.
Individuals living with dementia are especially at risk for COVID-19 given the effects of memory issues on an individual’s ability to socially distance and wear a mask, and their diminished ability to advocate for their own health needs. Progressive damage to the blood‐brain barrier also increases their susceptibility to the virus.
Despite this stark reality, the dementia community — especially Black, Indigenous, and other people of color with dementia and their caregivers— remains invisible when it comes to our nation’s response.
Vaccination efforts have been inequitable. A Kaiser Health News analysis of 23 states found that Blacks and Latinos are being vaccinated at a much lower rate than Whites. Older Americans of color face obstacles at every turn when it comes to navigating the vaccine signup process, including lower rates of internet access and difficulties navigating poorly-designed websites.
Long term care facilities, where nearly half of the residents have some form of dementia, continue to be COVID-19 hotspots despite calls for equitable testing and vaccine efforts by advocacy groups like UsAgainstAlzheimer’s. A recent study found that residents of nursing homes with more than 40 percent non-White residents died of COVID-19 at more than three times the rate of those with majority White residents.
Debilitating economic costs are falling on the shoulders of the 16 million families that provide dementia care, further exacerbating the disastrous health impacts of COVID-19. Millions of caregivers —16 percent of Latinos and 13 percent of Black Americans — have been forced to leave the workforce during the pandemic to provide care for family members at risk of COVID-19. However, caregivers for older adults have been left out of the paid leave provisions of every piece of COVID-19 relief legislation.
There has never been a more urgent time to bend the COVID-19 curve in the dementia community and there are three steps that can help guide the way.
First, states must include all individuals living with dementia and their caregivers in priority groups for vaccination and ensure both vaccine appointments and vaccines themselves are truly accessible. Caregivers of color often fall outside priority groups as they tend to be younger: The average age of a Black and Latino caregivers is 47 and 43, respectively. With adult day programs shuttered, dementia caregivers often lack respite care services and have limited options to safely leave their loved ones to get vaccinated given the 24/7 care those with dementia often need. Community health centers with mobile clinics and home health nursing and hospice services could be enlisted to ensure vaccines reach these communities. Recent COVID-19 vaccination policy updates in states like Massachusetts demonstrates how vaccination of older adults alongside their caregivers can work to address rather than exacerbate inequities.
Second, the Centers for Disease Control and Prevention (CDC), states, and patient groups must work together to develop and locally disseminate culturally tailored public health messaging that is accessible to diverse families providing dementia care. Culturally tailored vaccine information and dissemination targeting family caregivers — developed with their input— is critical to help families navigate a complex process that is wrought with misinformation. The CDC’s Healthy Aging program is uniquely positioned to support this goal if it’s fully funded to do so and it can enlist trusted local messengers to ensure that accurate information is communicated in a timely and effective manner.
Finally, Congress must establish strong paid family leave protections to promote economic stability while protecting against infections. Paid leave policies have proven to be an effective strategy for preventing the spread of COVID-19 and they must be expanded to include family caregivers of older adults. This flexibility, aimed at caregivers of the triply-vulnerable, may pay dividends by helping to recoup the $25 billion in annual lost-productivity costs due to caregiving, in addition to allowing a substantial number of people of color to return to the workforce.
If the Biden-Harris administration is going to improve the foundations of healthcare for all Americans — as its pick for Secretary of Health and Human Services Xavier Becerra has said it will do — it must make brain health equity a priority as part of its response to COVID-19.
Without a course correction, the cost of inaction will continue to be counted in the number of people living with dementia lost to these twin pandemics.
Andrea Gilmore-Bykovskyi, PhD, RN, is an Assistant Professor in the School of Nursing at the University of Wisconsin-Madison.
Jonathan Jackson, PhD, is the Executive Director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School.
Jason Resendez is the Executive Director of the UsAgainstAlzheimer’s Center for Brain Health Equity.
Stephanie Monroe is the Executive Director of AfricanAmericansAgainstAlzheimer’s, a network of UsAgainstAlzheimer’s.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.