New study into dementia within the Deaf community
24 February 2010
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UCL's Deafness, Cognition and Language research centre is part of a project to improve early diagnosis and management of dementia among Deaf people who use British Sign Language.
The research, funded by the Alzheimer's Society, will examine how to identify dementia in Deaf people and explore how they might best cope with the condition. The study will also investigate how to provide support services for the Deaf community and will develop assessment tools in British Sign Language (BSL).
Professor Bencie Woll is Director of UCL's Deafness, Cognition and Language research centre (DCAL), where the BSL assessments will be developed. She said: "Early identification of dementia brings many potential benefits, including access to medications, more time for people with dementia and their families to make decisions about care and support, and the potential for a better quality of life.
"For Deaf people, the current lack of information in BSL and poor awareness in the Deaf community about dementia, combined with no diagnostic tools in BSL, means early identification is unlikely to happen. This research project aims to resolve that problem."
The UCL team will work with colleagues at The University of Manchester, City University, and the Royal Association for Deaf people, bringing together Deaf and hearing researchers from a range of disciplines, including dementia care, social work, old-age psychiatry, psychology, Deaf studies and Sign Language research.
The researchers will study normal ageing amongst Deaf signing people with the help of several hundred Deaf people who come together annually for a holiday organised by the English Deaf Darby and Joan Club. The team will also work with Deaf people who have been diagnosed with dementia and their carers to explore their experiences of living with the illness, their priorities for care and how to improve early identification and support services.
Lead researcher Professor Alys Young, from the Social Research with Deaf People programme at The University of Manchester, said: "Nobody knows whether Deaf people are more or less likely to experience dementia than hearing people. Our assumptions about what might be valued in care and support are based on hearing people's preferences, not rooted in an understanding of Deaf people's cultural experiences. Information about dementia and related services does not exist in Deaf people's preferred or only language - BSL.
"There are no validated assessment tools in British Sign Language for diagnosis of dementia among Deaf people and using assessments designed for English speakers with an interpreter can lead to misunderstandings; some terms do not mean the same thing to people from different cultures."
Image above left: Neurons inside the brain
UCL context
DCAL brings together leading deaf and hearing researchers in the fields of sign linguistics, psychology, and neuroscience. DCAL started its research in 2006 and is the largest research centre in its field in Europe, with nearly 40 staff and research students, about a third of whom are deaf.