Emma Ferguson-Coleman1, John Keady, Alys Young. 1. a Social Research with Deaf People (SORD) group , University of Manchester, School of Nursing, Midwifery and Social Work , Manchester , UK.
Abstract
OBJECTIVES: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural-linguistic status. METHODS: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18-60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18-60. Data were subjected to a thematic content analysis. RESULTS: Participants' concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia. CONCLUSIONS: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.
OBJECTIVES: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural-linguistic status. METHODS: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18-60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18-60. Data were subjected to a thematic content analysis. RESULTS: Participants' concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia. CONCLUSIONS: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.
Authors: Alys Young; Lorenzo Ferrarini; Andrew Irving; Claudine Storbeck; Robyn Swannack; Alexandra Tomkins; Shirley Wilson Journal: Med Humanit Date: 2020-01-20