How do we know what we don’t know? Exploring Deaf people’s experiences of supporting their Deaf family member living with dementia

Abstract

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

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

“…Quotes from the participants have been directly translated from BSL to English for the purpose of this paper by the lead researcher. In addition, the first author has shaped an interpretive sense-making role to supply cultural background to re-present the data as a Deaf, female, qualitative academic who uses BSL, sharing the same language, culture and history as other Deaf people in the UK (Ferguson-Coleman et al , 2018). Although they may share the cultural experience of being Deaf, they have not personally been a caregiver for someone with dementia.…”

“…There appears to be no clear reference within the existing literature to carers who may lose their hearing as they age (Maharani et al , 2018) nor, separately, carers who are Deaf British Sign Language (BSL) users (Ferguson-Coleman et al , 2018). The general distinction between those who experience hearing loss and those who consider being Deaf as a cultural identity marked by sign language use is rarely recorded within health or social care statistics (Emond et al , 2015; Young and Hunt, 2011).…”

“…Evidence is sparse about the requirements of Deaf carers supporting someone with dementia. Interviews held with five carers and four Deaf people with dementia found Deaf carers struggled to access information in BSL, experienced exclusion in discussing concerns with health-care staff (Ferguson-Coleman et al , 2018; Young et al , 2014) and standard community provision for carers, such as dementia cafes and support groups, were inaccessible, as no BSL interpreters were available (Ferguson-Coleman, Keady and Young, 2014). Some carers reported being ostracised from the Deaf community, as lack of awareness around dementia and care needs devalued the community’s understanding of carers’ needs within Deaf spaces (Ferguson-Coleman, 2016).…”

“…Distress and isolation experienced by Deaf carers at all stages of the care pathway, from seeking a culturally and linguistically appropriate assessment through to post-diagnosis support and provision, was highlighted in a first-person Deaf carer’s account with repeated barriers, as her competence as a Deaf carer was not recognised (Parker, Young and Rogers, 2010). Identifying priorities for effective support for Deaf BSL users with dementia and their primary carers who were also Deaf in Northern Ireland highlighted the importance of culturally tailored support after diagnosis (Ferguson-Coleman et al , 2018) concluding that a “Deaf dementia advocate” was needed to connect Deaf carers and the person with dementia to networks, as well as enhancing service providers’ knowledge.…”

“Left Behind and Ignored”: Increasing Awareness and Accessibility of Resources for Alzheimer’s Disease and Related Dementias in the Deaf Community

“…Providing ADRD resources in a sign language format will improve access to accurate ADRD-related information and improve awareness and health literacy among deaf people who use sign language. 1,4 Disseminating high-quality, culturally adapted, and linguistically aligned videos that are accessible can increase knowledge of ADRD care among deaf people. 5,6 We recommend the following actions for policy makers and advocates in the deaf community:…”