Managing dementia care during COVID-19 pandemic: caregivers’ experiences in Odisha, India

AIM: The present study explored the family caregivers’ perspectives and elicited their experience while managing dementia care during the COVID-19 pandemic in Odisha, India. BACKGROUND: The onset of the COVID-19 pandemic has diverted the attention of health systems away from chronic disease management and health services delivery. Psychiatric care particularly for dementia and the elderly is found to be more compromised in such situation. METHODS: We adopted an inductive phenomenological approach to garner key insights into the care continuity for people living with dementia in the context of the COVID-19 pandemic. Telephonic in-depth interviews (IDIs) were carried out with 17 immediate caregivers. All IDIs were digitally recorded, transcribed, and analysed using a thematic approach. FINDINGS: Caregivers did not perceive dementia as an overwhelming challenge; instead viewed it as a part of the ageing process. Caring for dementia was being done by family members as a collective responsibility with task-sharing. The caregivers primarily relied on their usual physician for the continuity of dementia care and took utmost precautions to prevent exposure to COVID-19 risk. However, they found it more challenging to ensure adequate care for the multiple illnesses (multimorbidity) coexisting with dementia. Towards this, they adopted all possible measures to keep the chronic conditions under control, lest the vulnerability to COVID-19 infection might heighten. The fear of visiting a hospital, prevailing restrictions in mobility, and diverted attention of health systems to pandemic containment created impediments towards maintaining multimorbidity care. The support of local administration, neighbourhood pharmacy and diagnostic laboratories and teleconsultation with the physicians were vital for care continuity. Caregivers adapted by reducing or deferring physical consultation and seeking treatment via telephonic advice of the treating physicians. Our findings suggest leveraging digitally enabled health care technology and augmenting caregiver activation for home-based dementia care to cruise through any similar catastrophic situations.