Year in Review 2020
Looking back at a unique year
The year of 2020 will be remembered for the novel coronavirus global pandemic, a historic national election, the political uprising after the death of George Floyd in the US, and the challenges we all individually faced in the wake of these events. At the Mesulam Center, faculty, staff, and clinicians have navigated these challenges to continue operations, research endeavors, and clinical care for those with dementia. Together, the center has adapted to make sure that dementia research continues and patients have access to care through telehealth and in-person visits.
As news of SARS-COv-2 was circulating at the beginning of 2020, decisions were made to postpone two of the center’s major conferences including the PPA Conference scheduled for March and the annual Alzheimer Day planned for May.
As the University mandated working from home beginning March 16, the Neurobehavior and Memory Clinic quickly pivoted to seeing patients virtually in order to conduct diagnostic evaluations and follow-up visits in mid-March. The swift move to tele-neurology offered a vista into the future of neurological care, and perhaps paved the way to make care more accessible. With the center's focus on primary progressive aphasia (PPA), a rare dementia diagnosis that affects language rather than memory, physicians are committed to making neurological care more available. Social work consultations were also held via telehealth for more than 150 families through the clinic for psychosocial assessment, counseling, disease education and linkage to community resources between March and August.
Throughout the year, the need for support groups grew. As attendance in online groups increased, social work staff decided to offer another support group specifically for care partners of individuals with PPA. The FTD/PPA Care Partner Support group is now two separate groups, one for FTD, and one for PPA, to offer a better experience for all care partners.
One research study that thrived during this time was Communication Bridge, a telehealth clinical trial, which is the largest speech language therapy clinical trial for individuals living with primary progressive aphasia (PPA). During this time, the participants were able to continue regular speech therapy sessions and the study saw steady enrollment. With record low rescheduling, the Communication Bridge programs provided a space for connection during this time. This fall the study expanded its reach as far a New Zealand, and participants are from 20 US states, four countries and three Canadian provinces.
Other challenges posed by coronavirus included the facilitation of brain autopsy. Brain donation is a key part of the center’s research that allows better understanding of the pathology of dementia. Throughout the pandemic many facilities that normally provide brain autopsy outside of Chicago were not operating. With research participants all over the country, it was challenging to find different facilities or private pathologists who could perform a brain autopsy in other states. Through careful coordination, the center was able to accept every brain donation from participants who have passed away, exceeding the number of brains donated in the previous year. This is an important accomplishment to aid center scientists in better understanding, diagnosing and treating dementia.
While we do not know what 2021 will bring, the center is planning for online events including the 27th Annual Alzheimer Day and the PPA Conference, providing support to individuals with dementia and their families, while continuing research the complexity of dementia.