Deafness, Dementia, and Sign Language

The proposed research focuses on people within the culturally Deaf community who are Deaf, use British Sign Language (BSL) as their first and preferred language, and have been affected by dementia (including their families). Research results and outputs will inform future policy by incorporating the lived experiences and opinions of the Deaf signing community.

The project will investigate two central questions:

What is the lived experience of dementia and available services within the culturally Deaf community - this will include; the knowledge within the Deaf community of dementia and dementia services, BSL-users' communication preferences (and if they are accommodated), the influence of recent societal developments e.g. Covid-19, social media, and barriers to accessing support.

The second strand of the project will investigate how improvements can be made regarding diagnosing dementia in Deaf BSL-users. Existing cognitive testing assessment tools have been developed and utilized targeting a hearing population, and are arguably unsuitable for users of BSL, partly because they target reading skill rather than cognitive ability.

Although tests aimed at Deaf BSL users have been developed (BSL Cognitive Screening Test, BSL Verbal Learning and Memory Test), there appears to be little awareness of these within the Deaf community.

Methodology - data collection will consist of semi-structured interviews, focus group discussions, and questionnaires (UK-wide via online delivery). Participants will be targeted and recruited using leaflets, posters, or video clips. Interviews and discussions will be filmed, with an interpreter present if requested, and transcribed.

Specific interview questions will be designed and developed to elicit thought out, in-depth responses from participants which will allow for analysis of rich, rather than superficial, data. At the initial stage, it is envisaged that Interpretive Phenomenological Analysis (IPA) will be employed for data analysis, whilst also allowing for the influence of some aspects of narrative or thematic analysis.

Questions will be presented in a way that avoids any appearance of researcher bias or influence, allowing participants the confidence to express their views freely, without fear of being misinterpreted.

Existing relationships with Deaf clubs/Deaf centres will be developed to form a deeper understanding of related issues, and to instill confidence among potential participants. This, along with the researchers existing experience of working with the Deaf community, will help to reduce the impact of being considered an 'outsider' to a minority community that has suffered from historical discrimination.

Voluntary organisations e.g., Alzheimer's Society, British Deaf Association, will be contacted for assistance with recruitment for the online questionnaire.

Envisaged outputs would include, but not be limited to, presenting research results at conference, publication of research papers, investigation into viable future research.