Early in the COVID-19 pandemic, in my practice caring for persons living with dementia, I witnessed awful sufferings. The necessity of social distancing isolated my patients from vital services and supports such as adult day activity programs and, for those in hospital or residential facilities, nurturing visits from family and friends. Their disabilities worsened. Many died. Their family caregivers were overwhelmed with the added work of care and grief.
I confess, though, I’m reluctantly grateful for one consequence of social distancing. Before March 2020, some of my patients couldn’t see me at my office. And then, abruptly, I began seeing them. The visits were at my virtual office. Video or audio telemedicine gave them access to care, made possible when, in response to the public health emergency, Medicare waived limitations on its practice.
Unfortunately, as the public health emergency fades, this waiver will expire. This shouldn’t happen. Telemedicine has the potential to revolutionize the care of the 8.8 percent of adults age 65 and older, or approximately 3.8 million Americans, living with dementia. It will also accelerate America’s goal of early diagnosis and treatment of the diseases that cause dementia, such as Alzheimer’s disease, Lewy Body disease, vascular disease and frontotemporal lobar disease.
Among my patients who benefitted from telemedicine were those whose caregivers, typically adult children, lived far from my Philadelphia office. Others were persons living with advanced stages of dementia, requiring caregivers to provide life’s basic needs, such as dressing, eating and moving about. Some, despite the best efforts to stimulate and calm their mind, develop anger and aggressiveness, making even short-distance travel intensely traumatic.
Before telemedicine, these patients simply stopped coming to see me, or their caregivers would resort to telephoning me. I managed, but I did so with notable limitations. Medicare didn’t recognize a call with a patient as a “physician visit.” True, I prescribed care and wrote a chart note, but this work was unbillable. For most clinicians, this structure was an understandably frustrating exercise in delivering care with limited, if any, compensation.
The pandemic abruptly changed this. The COVID-19 public health emergency allowed Medicare to recognize a telemedicine visit as a billable office visit. The health care system where I practice installed a user-friendly digital “dashboard.” It organizes visits, addresses concern of privacy and security, and allows me to text the patient and family if I’m running late. Multiple family members in different locations can participate. On one screen, I see them, and on another, I have the chart opened. I’m able to screen share images and other information.
As the pandemic wanes, however, my colleagues and I fear we’ll return to the old system. Fortunately, Congress is considering the “Advancing Telehealth Beyond COVID–19 Act of 2022.” This bill would authorize Medicare to continue telemedicine until Dec. 31, 2024. The bill passed the House by a lopsided 416-to-12 vote. It now awaits a vote in the Senate. It ought to become law.
The bill has several valuable provisions. It allows for audio-only (telephone) visits. This is of tremendous advantage for persons who lack access to internet services and other technologies necessary for video and also for visits that really don’t need video, particularly for behavioral health.
Another benefit of the bill’s provisions is increased access to care. Telemedicine has been shown to be a notable benefit to persons living in rural areas and other regions with limited access to medical care. In dementia diagnosis and care, access is an enormous problem. There simply aren’t enough of the essential professionals, such as physicians, speech-language pathologists, psychologists and social workers, to meet the need. The bill begins to address this. It covers the services of several of these specialists.
As the COVID-19 public health emergency winds down, America still faces another public health emergency: the slow burning problem of dementia. A system of telemedicine – coverage for visits with health care professionals – is just a start. America needs to integrate this practice into an internet of care. Or, in short, a system of telehealth care.
One of the most common and important question my patients and families ask me is what to expect in the future. Implicit is really several questions: What’s wrong now, how will it change, and what should I do moving forward? Unfortunately, most persons don’t have access to the multi-disciplinary team needed to answer these questions. Telehealth care promises access to this team and to enhance the data it needs to deliver early and accurate diagnosis and quality care.
One promising opportunity is monitoring a person’s day-to-day function. Taking longer to complete or making errors in activities such as preparing a meal or paying bills often reveals emerging cognitive problems caused by diseases such as Alzheimer’s. Ordinary household appliances can monitor daily function, which is key to early diagnosis, and then tracking and managing function.
A “smart refrigerator” can track the comings and goings of food and, therefore, declines or other changes in shopping and eating. Among the earliest predictors of worsening cognitive abilities is a decrease in “life space,” the frequency and distance a person travels outside the home. A smartphone that counts steps or a device in a car can easily track these data. Computers, smart phones and watches and tablets can of course directly assess cognition, but even more intriguing is interrogating these devices’ day-to-day use to predict decline.
These are just examples. Truly, the list is growing. Combining these real-world data into a person’s medical record with telemedicine access to experts will revolutionize care.
Telehealth care faces numerous structural challenges related to data integration, privacy, scope of practice and reimbursement. An immediate one is reforming state licensure laws. During the pandemic, these were waived. I could care for patients wherever they resided. Now, as a physician licensed in Pennsylvania, I can no longer practice telemedicine with a patient who lives just across the Delaware River in New Jersey. This makes no sense. A national problem like dementia needs a national solution.
This vision of telehealth is a great experiment whose costs, quality and equity must be evaluated. But if it succeeds, it will launch a revolution in health care that could benefit all Americans.
Jason Karlawish is a professor at the University of Pennsylvania’s Perlman School of Medicine and author of “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.” Follow him on Twitter @jasonkarlawish.