The Deaf People with Dementia Research Project is part of the
School of Nursing, Midwifery and Social Work

Deaf People with Dementia Research Project

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British Sign Language (BSL) is used by 100,000 people in the UK. Lack of awareness of BSL can create barriers to diagnosis, support and care which results in Deaf people's access to services lagging behind.

The Government has released a policy document: Living well with dementia: A National Dementia Strategy. This document makes clear recommendations about the early diagnosis of dementia and the improvement of accessible information. However, it is not clear how BSL users will be included in this. Please see related links on the left to see the Government policy document.

This exciting research project is a partnership between:

Study 1

This is led by DCAL, University College London. They will explore normal ageing milestones in the Deaf community as there is no information currently available. Hearing people have an awareness of what to expect but BSL users do not. UCL also will develop a culturally appropriate assessment tool that can be used with BSL users.

Study 2

This is led by the University of Manchester. Hearing people with dementia have only in the last 20 years been able to document their experiences of living well with dementia. Deaf people with dementia have not yet had this opportunity. This project will record BSL users who are living with dementia and their carers' experiences. This is extremely important because:

  1. We need to know what BSL users and their carers' first-hand experiences are of care and support
  2. How being a BSL user can have impact on early diagnosis of dementia
  3. What their everyday lives are like
  4. What their experiences of services have been like, positive or negative? Have interpreters been booked?

Study 3

This is a partnership between the University of Manchester, Alzheimer's Society and Royal Association for Deaf people. We will set up six focus groups with the general Deaf community across the UK to ask what their knowledge of dementia is and where they would go for support or information.

We will also review current service provision, ask the Deaf community's views on these and report those preferences back to the services so they know how to move forward.

Dementia Action Alliance have released the National Dementia Declaration - please see links on the left to go to their website. The Deaf with Dementia research project will contribute to making the aspirations and commitments in the National Dementia Declaration a reality for Deaf people living with dementia and their carers.

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