Impact of the COVID‐19 Pandemic on Patients with Dementia or Parkinson’s Disease and their Caregivers in Lima, Peru

Abstract

AbstractBackgroundProgressive neurodegenerative diseases, such as dementia and Parkinson’s disease (PD), lead to difficulties completing activities of daily living (ADLs). In Peru, a low‐to‐middle income country, caregivers are family members who learn to provide caregiving based on the patient’s primary neurologists’ recommendations and through social media. During the COVID‐19 pandemic, Peru had one of the strictest enforced lockdowns, yet the country had one of the highest mortality rates worldwide. Little is known of the pandemic’s effect on patients with neurodegenerative conditions and their caregivers in Peru. This study aimed to examine the effect of the pandemic on patients and caregivers.MethodWe enrolled participants who were caregivers of patients with dementia or PD who receive care at a large public neurology hospital in Lima, Peru. A modified version of the Zarit Caregiver burden scale and a questionnaire on COVID‐19 symptoms, mental and physical well‐being was administered to each caregiver by phone. We performed descriptive statistics.ResultWe enrolled 44 caregivers with females comprising 80% of patients and 60% of caregivers, mean+/‐ standard deviation (SD) age of 73.2+/‐11.4 and 48.6+/‐12.1 years, respectively. More than 70% of patients had dementia and 20.5% had PD. Nearly one‐third of patients tested positive for COVID‐19 and nearly all patients were fully vaccinated with a booster. Nearly all patients (98%) adopted social isolation measures and 86% of patients maintained social connections with family by phone. Unfortunately, many patients had difficulties obtaining medications (48%), felt lonelier (52%), and had an increase in anxiety (60%), agitation (43%), hallucinations (50%), and forgetfulness (71%) compared to before the pandemic.The majority of caregivers had only completed secondary school (34%) with nearly 40% reporting working full‐time in addition to caregiving. We found that 82% felt more overwhelmed with caregiving, 16% reported interruptions in additional caregiving support and 73% needed to dedicate more time to caregiving.ConclusionMore studies are needed to highlight where the most difficult aspects of caregiving in low‐and‐ middle income countries to target caregiving resources and ameliorate caregiving burden worsened during the pandemic. Developing caregiver training sessions to improve patient quality of life is crucial.