Impact of the COVID-19 Pandemic on Patients with Dementia or Parkinson’s Disease and their Caregivers in Lima, Peru
Monica Diaz1, Morgan Beauchamp2, Maisie Bailey3, Ximena Aguilar4, Danilo Sanchez Coronel5
1Neurology, University of North Carolina at Chapel Hill, 2Neurology, University of North Carolina at Chapel Hill School of Medicine, 3Oregon Health Sciences University School of Medicine, 4Universidad de Lima, 5Department of Neurodegenerative Diseases, Instituto Nacional de Ciencias Neurologicas
Objective:
We studied the COVID-19 pandemic’s effect on patients and their caregivers in Lima, Peru.
Background:

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.

Design/Methods:

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.

Results:

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.

Conclusions:

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.

10.1212/WNL.0000000000202033