Abstract

About the project (BSL version)

About the project (written English version)

This project is about facilitating early identification of dementia amongst Deaf people who use British Sign Language, and developing effective care which meets their unique needs. It is unknown whether Deaf people are more likely to experience dementia than hearing people. However, it is unlikely that dementia will be recognised in its early stages because:

• Indicators based on language use/cognitive function are difficult to spot because of a lack of normative healthy ageing data and a lack of a suitably normed and culturally appropriate assessment instruments in BSL.
• Poor access to information/little knowledge about dementia within the Deaf community itself.
• Lack of research knowledge about the experience of dementia from Deaf people’s perspective.
• Poor access to mainstream clinical and support services who are unlikely to have specialist Deaf-related awareness or knowledge.

These deficits contribute to significant health inequalities and marginalisation because:

• Deaf people will not benefit from the advantages of effective treatments such as anti-dementia medication ;
• Deaf people with dementia and their carers will not benefit from support services in the early stage;
• Deaf people with dementia will have less opportunity to be involved in decisions about their lives and their care whilst they are still able to do so.

Research aims

1. To establish the parameters of normative changes in language and cognitive development associated with healthy ageing in a population of Deaf signing older people
2. To describe the experience of dementia from within the cultural perspective of signing Deaf people with dementia and their carers.
3. To explore the understanding/knowledge of and attitudes towards dementia in the Deaf community in so far as it relates to its identification, familial/community support, and service need and access.

Methodology
The project consists of three studies. 

• Study 1 will establish the parameters of normative changes in language and cognitive development associated with healthy ageing in a population of Deaf signing older people and develop and pilot a neuropsychological battery for BSL users suitable for the identification of cognitive changes associated with dementia  This study is led by DCAL (the Deafness Cognitiion and Language Research centre at UCL) and City University London. 
• Study 2 will explore the experience of dementia from within the cultural perspective of signing Deaf people with dementia and their carers. 
• Study 3 explores the understanding of and attitudes towards dementia in the Deaf community in so far as these relate to its identification, familial/community support, and service access. [Studies 2 and 3 are led by the Social Research wtih Deaf People group and the Dementia Care group at the University of Manchester in collaboration with the Royal Association in aid of Deaf People]