“What have YOU done in the past few years?” Deaf BSL users’ experiences of caring for people with dementia during COVID-19

Abstract

Purpose Deaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences. Design/methodology/approach Online interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers’ stories. Findings Findings included Deaf carers’ lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population. Research limitations/implications Seven Deaf carers took part in this study. This means the findings may not be generalisable. Practical implications Health-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care. Social implications If health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia. Originality/value To the best of the authors’ knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package.