We find ourselves with two massive global public health problems existing simultaneously and disproportionately affecting older adults: Alzheimer’s disease, an irreversible and progressive brain disorder, and COVID-19, an infectious disease. Despite some major fundamental differences between Alzheimer’s and COVID-19, there are also frightening parallels. The most frightening being that for both Alzheimer’s and COVID-19, there are no known effective medical treatments. The dementia epidemic now exists within context of the coronavirus pandemic and vice versa.
We must consider people living with dementia when implementing practices to prevent and treat COVID-19—including the unintended consequences that crucial public health practices, like social distancing, can have on people already at risk of social isolation. We must also accelerate the testing and dissemination of effective non-drug interventions to improve care for people living with dementia during the pandemic.
The Impact on People Living with Dementia
While it is impossible to know how many of those infected with coronavirus are people with dementia, we know enough to infer that they are at particularly high risk for infection, complications, and death. People typically develop dementia symptoms in their mid-60s and age is the highest risk factor for severe complication and death from COVID-19. The vast majority of reported pandemic deaths in China and Italy were among people age 65 and older; the same is likely to prove true in the United States.
People living with dementia also comprise about two-thirds of the population in long-term care facilities, such as nursing homes and assisted living communities. International data indicate that nursing home mortality rates are close to 50 percent and early estimates from the United States are similar, despite widespread agreement that existing data underreport nursing home infections and deaths. The Centers for Disease Control and Prevention (CDC) is not publicly reporting nursing home data and, in fact, the Centers for Medicare and Medicaid Services (CMS) only began requiring facilities to report infections about two months after a Washington state nursing home emerged as one of the country’s first hot spots. 43 percent of infected residents in that facility died. With investigative reporters estimating that nearly one in five nursing homes had positive COVID-19 cases by mid-April, the impact on people with dementia is likely to be catastrophic.
Our understanding of why congregate care settings are vulnerable to COVID-19 points to a variety of factors including the built and social environments, unintended transfer from exposed caregivers who necessarily remain in the community, workplace policies for sick leave, individual handwashing practices, and the virus intersecting with underlying health conditions, such as cancer, hypertension, and diabetes. Although this analysis is still in its infancy, it is clear that the incident rate and risk of adverse outcomes, including death from COVID-19 increases with age. The same is true of Alzheimer’s. Not only that, but both conditions have the potential to be stigmatized, testing for both conditions is hard to get for some groups, and both are underdiagnosed.
Dementia Care and COVID-19
COVID-19 social distancing practices have created an urgent need to improve dementia care, as older adults are increasingly cut off from social ties. Social distancing and facility quarantines have turned nursing homes into, as a New York Times article noted, "Islands of Isolation," where non-resident friends and family have no access. Visitation at most facilities has been limited to end-of-life situations only, or not at all, which has the unintended consequence of eliminating the support that family members and caregivers can provide.
Additionally, people with dementia risk being cut off from familiar caregivers, as facilities restrict entry to essential personnel-only, staff call out sick, and those left (even if familiar to residents) look unfamiliar wearing personal protective equipment (PPE). The use of PPE can be challenging for older adults with hearing loss and frightening to people with dementia who may not fully understand what is happening. Those in need of human touch may not be getting it.
There are innovations and improvements rising from the crisis. For example, in response to coronavirus, Medicare coverage for telehealth visits between older beneficiaries and their providers has greatly expanded. While virtual engagement may help mediate the impact of social isolation and provide access to care, its use may be a technical challenge for people living with dementia and burdensome for staff.
Of course, dementia care doesn’t just occur in nursing homes. It occurs across the continuum of care from acute care to home and community-based settings. Most adult day centers have been forced to close due to coronavirus. Home health providers have found themselves turned away from client’s homes due to fears of the virus and are shifting all non-essential visits to telehealth to avoid spreading COVID-19.
The majority of people living with dementia in the U.S. live in the community with unpaid care provided by family caregivers. The COVID-19 pandemic will undoubtedly impact community caregivers in a myriad of ways both expected and unexpected. The economic hardships of caring for a loved one with dementia disproportionately impacts communities of color. The financial burdens are likely to compound as a result of COVID-related changes that eliminate jobs and reduce access to social and emotional support.
Caregiver burden for Alzheimer’s was already extremely high before the pandemic. These outcomes can only worsen under a shelter in place order being enforced in multiple states and such an impact is highly gendered. More than half of these caregivers are women, either adult daughters or spouses. Likely the same group who will be called upon to provide other essential services during nationwide closures of day cares and schools.
We know very little about what cabin fever feels like for people with dementia and their caregivers. Caregivers under quarantine may be in desperate need of coping skills, tailored activity programs, and respite when the restrictions lift. We should have built capacity before this. We need to do it now.
The Power of Non-Drug Interventions
The rate at which people contract COVID-19 and develop Alzheimer’s disease is significantly greater than pharmacologic advances. With no vaccines or identified treatments on the immediate horizon, and a high demand for therapeutic benefit, health care providers and researchers are renewing their focus on the promise of non-drug interventions in the fight against Alzheimer’s and COVID-19. Indeed, non-drug interventions are exactly what epidemiologists are suggesting to flatten the curve of new COVID-19 cases. And, while non-drug interventions may not prevent Alzheimer’s, they may well be the only way to lessen the misery of sufferers, caregivers, and prevent the overwhelming of our ability to provide care. There is an urgent need to generate high-quality evidence about dementia care that works in the context of COVID-19.
Thanks to a major NIH initiative focused on conducting pragmatic trials, there is hope of increasing connectivity between health care providers and researchers with the hope of improving dementia care. However, the pandemic threatens to grind this work to a halt. Rightly so--attention is on the immediate need to stop the spread of the virus. Additional challenges include restrictions by funding agencies and IRBs on clinical research involving human subjects, especially older adults. Most research of non-drug interventions have also been deemed non-essential, resulting in the pause of recruitment of participants and the shift from in-person data collection to virtual methods. Although, research must be conducted safely, these pauses must not lead to inaction or a delay in progress for dementia care. Instead, we must consider the effectiveness of interventions used by health care systems in response to both COVID-19 and Alzheimer’s.
Preparing for the future
Researchers and health care systems must continue to partner to maintain momentum in dementia care and coronavirus research simultaneously. As health care systems turn away researcher partners, who are often not system employees, to stop virus spread, the need for learning health systems and embedded researchers is heightened. Anticipating the unintended consequences of research pauses and finding ways to remain responsive to the needs of people living with dementia and their caregivers during this time is critical. These concerns will not be addressed with only pharmacological and telemedicine solutions. Because of this, the need for research on non-drug interventions for dementia care has never been greater. When it comes to our fight against Alzheimer’s disease and COVID-19, non-drug interventions may be the most powerful thing we can put in the syringe.
To learn more about the NIA IMPACT Collaboratory, including two new funding opportunities, visit www.impactcollaboratory.org.
Disclaimer: This work was supported by the National Institute of Aging (NIA) of the National Institutes of Health (NIH) under Award Number U54AG063546, which funds the NIA Imbedded Pragmatic Alzheimer’s Disease and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content is solely the responsibility of the author and does not necessarily represent the official views of the National Institutes of Health.