Deaf With Dementia

Background
This paper concerns culturally Deaf people - sign language users - with dementia. A brief introduction, contextualizing the significance of dementia and its effects for this community, is followed by a description of the Deaf with Dementia research project, funded by the Alzheimer's Society. The needs of members of the British Deaf community with dementia are often unrecognized. Limited interaction is attributed to communication barriers, not cognitive decline. They often live their final years in an environment where nobody signs. There has been little research on the experience of dementia from the Deaf perspective, or on the impact of communication isolation. When the DwD project began, there were no cognitive assessments in BSL, no culturally or linguistically appropriate clinical services, and no network of support groups for Deaf people with dementia. Knowledge in the Deaf community about dementia was poor.

Methods
Methods comprised collection of cognitive and language data from healthy aging signers; and interviews with patients, carers and healthy aging signers in 3 linked studies.

Results
Study 1: milestones of normal ageing in the Deaf community were identified, creating a cognitive and language screen in BSL with a standardized video format, sampling memory, visuospatial, language and executive function abilities, as well as orientation to time and space. Study 2: The experiences of Deaf people with dementia had not been documented. Signers living with dementia and their carers were interviewed. First-hand experiences were been analysed, including how being a BSL user can have impact on early diagnosis and experiences of services. Study 3: Deaf community focus groups were asked about their knowledge of dementia and where they would go for support or information. The groups were also asked to review current service provision, in order to report preferences back to services, and to create accessible information materials for Deaf people.

Conclusions
Unsatisfactory assessments, late diagnosis, and poor support mean that the Deaf community receives unequal access to treatment and services. Meeting the needs of Deaf citizens, especially in ensuring full communication access, is a challenge we must meet. Better understanding will also inform provision for people with hearing loss and other communication impairments.