Dementia study launched within the Deaf community

Researchers have launched a unique project to improve early diagnosis and management of dementia among Deaf people who use British Sign Language (BSL).

The research, funded by Alzheimer’s Society, will examine how to identify dementia in Deaf people 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.

The University of Manchester team, working with colleagues at UCL (University College London), City University London, and the Royal Association for Deaf people, brings 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.

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.”

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.

Professor Bencie Woll, at 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. This research project aims to resolve that problem.”

Professor Jane Marshall, at City University London, added: “The benefits of this project will be felt by Deaf people with dementia, their families and the health professionals who support people with this devastating diagnosis. The project should also add to our general understanding of dementia by studying its manifestations in a previously neglected language and cultural group.”

Dr Susanne Sorensen, Head of Research at Alzheimer’s Society, said: “This exciting piece of research will, for the first time, look into the experiences of Deaf people with dementia. A person with dementia may have difficulty communicating and this can become a more complicated problem for Deaf people.

“The fact that many Deaf people struggle to get a diagnosis of dementia means that they’re unable to access treatment that 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.”

To view the full press release in British Sign Language click here


Notes for editors

This project is specifically about older people who are Deaf and use British Sign Language (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.

Profound deafness from birth or early childhood can make speech and the lip reading of spoken language very difficult. Learning to read can also be very hard because much of reading is based on the sounds of written words. If they are not heard, it can be very difficult to make sense of them when they are written down. This is why a great many older Deaf people have very low levels of English reading and writing.

British Sign Language 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.

The notes for editors can be viewed in British Sign Language by clicking here

For further information contact:

Aeron Haworth
Media Relations
Faculty of Medical and Human Sciences
The University of Manchester

Tel: 0161 275 8383
Mob: 07717 881563
Email: aeron.haworth@manchester.ac.uk