New dementia study to aid Deaf groups

MANCHESTER scientists have launched a unique project to improve early diagnosis and management of dementia among Deaf people.

The research, funded by Alzheimer’s Society (AS), will examine how to identify dementia in Deaf people who use British Sign Language (BSL) and explore how they might best cope with their condition.

The study will also investigate how to provide support services for the Deaf community and develop assessment tools in BSL.

A team from University of Manchester (UoM) will  work with colleagues at University College London (UCL), City University London, and the Royal Association for Deaf people on the project. They also hope to bring 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.

“Nobody knows whether Deaf people are more or less likely to experience dementia than hearing people,” said Lead researcher Prof Alys Young, from the Social Research with Deaf People programme at UoM.

“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.”

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 with a diagnosis of 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.

Prof Bencie Woll, of UCL’s Deafness, Cognition and Language research centre, where the BSL assessments will be developed, 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.”

Dr Susanne Sorensen, head of research at AS, added: “This exciting piece of research could help relieve some of their symptoms and enable them to remain independent for longer. One million people will develop dementia in the next 10 years. We must act now.”

This project is specifically about older people who are Deaf and use BSL. Deaf with a capital ‘D’ usually refers to that group of people who use BSL, while deaf with a lower-case ‘d’ is used to refer to the many people who experience a deterioration in their hearing as they become older.

BSL provides Deaf people with a way of fully communicating, receiving information and participating in all aspects of life. About 50-60,000 people use BSL as their preferred or only way of communicating. BSL is not a set of gestures or a visual way to represent English. It is an independent language, developed in the Deaf community centuries ago, that is unrelated to English.

There is a strong community of Deaf people united by a common language and way of life – this is usually called Deaf culture. More than 90% of Deaf people choose another Deaf person as their life partner.

Like the population in general, the Deaf community is ageing and it is likely that many experience dementia, although no exact figures are available.

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