Family caregivers' experiences of long-term care residents living with dementia during the COVID-19 pandemic: An international grounded theory study

Aims: Caution around the COVID-19 pandemic resulted in visitation restrictions to prevent the spread of the virus among vulnerable older persons living in long-term care (LTC), which posed a threat to individual well-being and family togetherness across the globe. The purpose of this study was to explore family caregiver's experience of having a person who is living with dementia residing in a long-term care facility during the COVID-19 pandemic.

Design: Qualitative descriptive study using constructivist grounded theory (GT) methodology.

Methods: The study was carried out in five countries: the United States, Switzerland, Hong Kong (China), United Kingdom and Japan. Data were collected between June 2021 and August 2022. In-depth understanding and initial theorising about experiences and social interactions between family members, residents and long-term care staff across cultural contexts, strategies from constructive GT were used. Data were collected through 15 semi-structured, in-depth interviews with 16 family members. Analysis included individual and team-based coding, memo-writing, constant comparison and category generation.

Results: Due to visit restrictions, families faced upsetting situations of exclusion. The caregiver participants experienced inequality, felt isolated and witnessed residents' despair and helplessness. Analysis revealed four subthemes to the basic social process of ‘negotiating for access to maintain relational continuity’: (1) Feeling excluded, isolated and upset; (2) facing depersonalising situations; (3) navigating challenging interactions; and (4) living with (post-) pandemic circumstances.

Conclusion: This study highlights the suffering experienced by family caregivers and their loved ones living with dementia in long-term care during COVID-19, demonstrating the key role that relationships play in family care. During similar public health crises, policies and infection prevention measures that depict family and close caregivers as visitors whose access needs to be regulated need to be altered into policies that enable a culture of partnership and inclusion acknowledging the importance of social interactions for health and well-being.