The Impact of the COVID‐19 Pandemic on Care Partners of People with Parkinson's Disease

Abstract

Background Since the onset of the coronavirus disease 2019 pandemic, the caregiving routine for care partners of people with Parkinson's disease (PwPD) changed substantially. Objectives To understand the nature and severity of burden in care partners of PwPD during the ongoing pandemic. We also sought to describe care partners' perceived change in burden and factors associated with increased burden. Methods Cross‐sectional online questionnaire‐based study among care partners of PwPD, registered in the Fox Insight study. The questionnaire consisted of the Modified Caregiver Strain Index, whether an aspect of strain had changed over the course of the pandemic and additional pandemic‐specific infection and lifestyle‐related items. Results Two hundred seventy‐three non‐paid primary care partners responded to the questionnaire, 73% female with a median age at enrollment of 64 years, 56% reporting a household income greater than 75,000 USD per year, and 61% retired. An increase in burden compared to before the pandemic was prevalent, ranging from 33% to 63% for individual items. Emotional strain increased most frequently (63%). Decreases in burden were uncommon; work adjustments (7%) and time demands (6%) decreased most frequently. PD‐related factors and care partner roles in personal care of the PwPD were the factors that were associated with strain in multivariable analysis, whereas social and pandemic‐related factors were not. Conclusion In this affluent and mostly retired cohort, increases in emotional strain during the pandemic were prevalent. Despite this, caregiving roles in personal care and severity of symptoms in the PwPD were more strongly associated with strain than social and pandemic‐related factors.