Impact of the pandemic on dementia care and caregivers: a qualitative study

Abstract

Physical distancing measures to limit contagion in the COVID-19 pandemic made it difficult to care for older persons with dementia. Non-essential home visits were prevented and family caregivers took over most of their care. The aim of our study was to describe the lived experience of peoples living with dementia caregivers during the pandemic regarding the care provided and the person cared for. A qualitative phenomenological design was used. Participants were recruited using purposeful sampling. Informants were selected from primary healthcare centers, day centers, and a community mental health unit. The study participants comprised 21 caregivers. Semi-structured in-depth interviews by telephone were used, and field notes were collected from the researchers. A thematic analysis was conducted. The criteria used to control trustworthiness were credibility, transferability, dependability, and confirmability. Three main themes and six related sub-themes were identified: (1) care for the person with dementia during the pandemic, including lockdown, associated with difficulties in coping with restrictions, deterioration in health, and the impact of the closure of health and social resources; (2) health and social care provided to people with dementia after the disruptions and the care received from primary care prior to hospital or residential admission; and (3) the caregiver's perspective on the effects of the psycho-emotional impact, and coping strategies adopted in caring. Interventions for people with dementia should be planned in order to prevent the worsening of their health and cognitive status, while also developing programs to prevent stress and alleviate caregiver burden in case of health crises.