Jason Karlawish, MD, is co-director of the Penn Memory Center, which provides evaluation, diagnosis, treatment, information, and research opportunities related to symptoms of progressive memory loss, along with accompanying changes in thinking, communication, and personality.

The Center is supported in part by the National Institute on Aging (NIA) and offers diagnosis, treatment, and research, focusing on individuals with dementia and mild cognitive impairment caused by Alzheimer’s disease and other age-related progressive diseases.

Research Branches Out

Karlawish also is one of the leaders of the Alzheimer’s Disease Research Center. The theme of this NIA-supported center is to understand the heterogeneity—the state of consisting of dissimilar or diverse elements—of Alzheimer’s disease. Current research projects examine how neuroimaging can show the different ways the disease presents as well as the biomarker measures of the pathologies.

According to Karlawish, in the past 20 years Alzheimer’s has undergone a revolution in how the disease is understood. Specifically, the diagnosis is being transformed from a clinical diagnosis to a diagnosis based on biomarkers only.

Biomarkers of the two pathologies that cause Alzheimer’s disease can be measured in spinal fluid or using positron emission tomography (PET) scans, he says. These, together with magnetic resonance imaging (MRI) measures of brain atrophy, allow a clinician to “see” Alzheimer’s disease in a person even before she has dementia, even before mild cognitive impairment. “So we’re about to enter a world where it’s possible to be diagnosed with Alzheimer’s disease but not to have dementia, and that’s a result of the biomarker transformation,” he says.

“My group is particularly interested in understanding the translation of the biomarker diagnosis into clinical practice,” says Karlawish. “In particular, how learning one is at risk of developing dementia caused by Alzheimer’s changes a person’s perception of themselves, how others treat them, and the plans and decisions that they make.”

Impacting the Infrastructure

Researchers at the Center’s COVID caregiving project, which characterizes the practical, emotional, social, and behavioral effects of COVID-19 on care partners and persons with dementia, have found in a recent study that, to no one’s surprise, COVID has been an enormous stress test to caregivers.

“We are using the study as a way to better understand the challenges faced by America’s caregivers so that when the pandemic does end, we can rethink the way that we design long term care services and supports so that they can address the challenges of caregiving in America,” says Karlawish.

For a person living with dementia in a long term care center, he says, COVID has been a particularly awful experience because of its impact on the infrastructure of the care setting. For example, changes made to adult day activities for patients with dementia during periods of lockdown left many patients and family members trying to help fill in the gap. Changes to all group setting activities led to an increase in isolation, but visitor restrictions also played an important part via changing the care model, he says.

“COVID has shown the importance of the informal care network in America, and it was revealed in long term care facilities in particular,” says Karlawish. “Because visiting policies in care centers were essentially shut down, as was the case in hospitals, care had changed. We saw very quickly how effectively removing those visitors from entering long term care facilities had an impact,” he says.

The effects of lockdown practices revealed that some visitors were not just visiting but were an essential part of the care team in a long term care facility, says Karlawish.

“They were helping a patient get up and be active during the day; getting them out of bed and to a meal, helping them stay cognitively connected,” he says. “When those informal caregivers were limited because of COVID, patients suffered mightily.”

Rethinking Policies

Going forward, research from the Penn Memory Center will encourage rethinking visitation policies in long term care facilities and in hospitals to recognize some visitors are more than just visitors; they are a part of the essential care team for a patient.

“The COVID experience warrants a thorough review of how well we are supporting these caregivers in terms of access,” says Karlawish. The Center is currently analyzing and wrapping up the data into a report for the fall of 2021.

The Center also has an outpatient practice that sees patients for diagnosis of care. Working at the Center since 1997, Karlawish has cared for a number of patients, who he says were among his best teachers. He points out that his experiences at the Center helped shape the stories in his recent book, “The Problem of Alzheimer’s—How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.”

“The overall point of the book is to explain how science and culture turned a rare disease into a common disease and how politics made it a crisis, and then to lay out what society needs to do to address the crisis, the concrete actions we can take now,” he says.

Another key point in the book is that there are steps that society can take to address the Alzheimer’s crisis and support Alzheimer’s patients, including a rethinking of long term residential care, Karlawish says.

“There is a need to reframe it as a humanitarian problem and take on the full measure of our medical but also social capital to address the challenge of living with Alzheimer’s.”

Read More: Resources for Care Providers