Experiences of English‐speaking care partners of individuals with brain health conditions during COVID‐19: a qualitative analysis

Abstract

AbstractBackgroundPublic health restrictions due to the COVID‐19 pandemic have affected care partners of people living with dementia and/or mental health conditions. This qualitative study explores care partners’ ability to offer care, and changes and interruptions to care provision during the period of the COVID‐19 pandemic (2020) in English‐speaking regions worldwide.MethodAs part of an international cross‐sectional online survey, qualitative data were collected from over 1,000 English‐speaking care partners of people living with dementia and/or mental health conditions. Responses to an open‐ended question about ability to care were coded and analysed thematically. The analysis was undertaken by three independent interdisciplinary coding dyads.ResultA number of main themes and subthemes were generated through the analysis. Reduced in‐person contact with the person with a brain health condition and restrictions in health and social care services created practical, psychological and emotional impacts for care partners. The lack of adequate information from health/social care services, deterioration in the condition of the person living with a brain health condition, and additional care hours/duties were identified. Care partners also mentioned the fear of virus transmission and increased awareness of public health measures as factors that changed or interrupted their ability to provide care.ConclusionThe ability of care partners to provide care was changed or interrupted, and disruption to routines and services available impacted on their well‐being. These findings reflect the complexity of the care partner role and highlight the importance of supporting care partners, in particular during periods of service restrictions such as those experienced as a result of the pandemic. Findings will be of interest to policymakers and service providers.