BackgroundThere are 850,000 people living with dementia in the UK; this number includes Deaf people who use British Sign Language, but little is known of their experience or how services might be improved to support them and their carers, who are often also Deaf. Deaf people are routinely excluded from reports on linguistic/cultural minorities and dementia because their status, as such, is not recognised. They are very different from the much larger population of older people who lose their hearing and may also have dementia. Aims and Objectivesi) To explore the everyday experiences of living with dementia from the perspectives of Deaf BSL users with dementia and their care partners; ii) To explore the general Deaf community's knowledge and understanding of dementia, its symptoms and impact on everyday life. MethodThree focus groups were held with a total of 26 Deaf BSL users, who did not have dementia, to gauge their knowledge about dementia and where they might go for support. Four Deaf BSL users living with dementia with five care partners took part in two semi-structured interviews 6-8 weeks apart. Data were analysed using thematic analysis, storied stories and narrative analysis. All data were collected in BSL by a Deaf researcher. ResultsLack of access to information and support in BSL impeded early recognition of symptoms, access to diagnosis, and support within the Deaf community. Personal narratives revealed Deaf people's resilience while living with dementia. Narratives challenged key concerns of personhood, citizenship and embodiment from a different perspective because Deaf people are not usually regarded as full citizens and their capacity is routinely challenged regardless of dementia. Furthermore, embodiment of communication and language is a life-long experience, not residual adaptation. Visual strategies to support agency were also documented.ConclusionsThe Deaf community needs provision of accessible and understandable information about dementia in BSL. Mainstream dementia support services should review their accessibility of effective support for Deaf BSL users who have been diagnosed with dementia and their families. However, Deaf people with dementia remain resilient and positive about their everyday lives with the support of their familial relationships.
|Date of Award
|31 Dec 2016
- The University of Manchester
|John Keady (Supervisor) & Alys Young (Supervisor)
- sign language