"What have YOU done in the past few years?": Deaf BSL users' experiences caring for people with dementia during COVID-19

Introduction: 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.
Aim: 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.
Method: 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 (IPA) was used to qualitatively examine each Deaf carers’ stories.
Results: Findings included Deaf carers’ lack of access to information, surrendering their autonomy to hearing family members to communicate with healthcare professionals, with shared experiences of isolation within local communities and online.
Discussion: These findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population.
Implications for practice: Healthcare professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care.