Since the first COVID-19 case was hospitalized at CUIMC on March 2, 2020, New York City has become the epicenter of both the American and world COVID-19 pandemic. The psychosocial and functional implications on our local population are myriad. Through continued remote clinical work and observational research, it has become clear that health-seeking behaviors have changed, although to what degree, by whom exactly, and their motivating factors and determinants remain uncertain.
A primary issue among dementia patients and caregivers in recent weeks and specifically due to necessary social distancing polices and school closures have been
a) the loss of potential direct contact with professional caregivers due to their own social distancing requirements, new person caregiving responsibilities, personal illnesses,
b) limited excursions in the local environment out of concerns, for contracting COVID-19, and
c) closure of myriad social day activities, both formal and informal.
As a result, persons with dementia are largely bound to their homes, confused by the chaos, and perceive and express the stress their family members experience. Moreover, many of these same family caregivers must balance remote work responsibilities and family caregiving, often within the same home. Unfortunately some of these circumstances are untenable and have led to illness, hospitalization, and death of some of our patients and research participants, as well as their family members.
Better understanding health-seeking behaviors and determinants during and after the local COVID-19 epidemic has potential implications both locally and distantly, as it may inform public health strategies. A survey is under development, which will include sociodemographic information, health-experiences and attitudes relative to COVID-19, adverse consequences of distancing including social isolation, social network measures, and history/attitudes regarding advance care planning. Using secure platforms (including Qualtrics, telephone, and/or Zoom), this survey will be completed with a study member by telephone or virtually, or may be completed independently by the participant, using Qualtrics via desktop or smartphone. Some metrics will be necessarily de novo, while others will use previously validated metrics as well as the NIH toolbox when appropriate.
While this survey is being developed specifically for NYC adults (specifically hundreds of adult participants in our ADRC and NCT03284112), and focused on a population affected directly or indirectly by ADRD, it is being designed to be modular in order to capture multigenerational effects, and adaptable to other settings/environments and disorders.