Progressive neurodegenerative diseases, such as dementia and Parkinson’s disease (PD), lead to difficulties completing activities of daily living. In Peru, a low-to-middle income country (LMIC), family members are full-time caregivers of these patients, causing a financial, mental and physical burden. During the COVID-19 pandemic, Peru enforced a strict lockdown with one of the highest COVID-19 case rates worldwide. However, little is known of the pandemic’s effect on patients with neurodegenerative conditions and their caregivers in Peru.

This was a cross-sectional, prospective study of family caregivers of patients with dementia or PD attending a large public neurology hospital in Lima, Peru. A caregiver burden scale and questionnaire addressing COVID-19 infection, mental and physical well-being were administered by phone. We performed descriptive statistics.

We enrolled 44 caregivers with females comprising 60% of caregivers, mean+/- standard deviation (SD) age of 48.6+/-12.1 years. Patients were mean age 73.2+/-11.4 years with 80% females. About 70% of patients had dementia. 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% maintained social connections by phone. Caregivers had difficulties obtaining medications for patients (48%), and patients felt lonelier (52%) and had an increase in anxiety (60%), agitation (43%), hallucinations (50%), and forgetfulness (71%) compared to pre-pandemic.

The majority of caregivers had only completed secondary school (34%) with nearly 40% reporting working full-time in addition to caregiving. Most caregivers (82%) felt overwhelmed, and 73% dedicated more time to caregiving during the pandemic.

More studies are needed to highlight difficult aspects of caregiving in low-to-middle income countries to ameliorate caregiving burden worsened during the pandemic. Developing caregiver training sessions to improve patient quality of life is crucial.