Creating and providing resources for Deaf people with dementia, and the healthcare professionals treating them
Research project: Deaf people with dementia: next steps
Lead Investigator: Professor Alys Young
Institution: University of Manchester
Grant type: Dissemination grant
Grant amount: £29,086
Start date: September 2014
Completion date: March 2016
What was the project, and what did the researchers do?
The project set out to look at the barriers to effective and early recognition of dementia in signing Deaf people and to identify pathways to improved diagnosis, care and support. This project developed two tests for assessing verbal memory and forgetting in Deaf people: the BSL Cognitive Screening Test (BSL-CST) and the BSL Test of Memory and Learning (BSL-VMLT).
The researchers want to ensure that Deaf people with dementia, their family, carers and the wider Deaf community directly benefit from these findings. This dissemination grant allowed them to extend the use of the assessments they had already developed. They aimed to improve diagnosis, provide information, knowledge and awareness with and for the death community, and make resources available for professionals.
What were the key results, and how will this help in the fight against dementia?
The two assessment tests are hosted on the DCAL (Deafness, Cognition And Language research centre) website https://dcal.azurewebsites.net/. DCAL carries out face-to face assessments of language and cognition in Deaf people. After receiving training, doctors who specialise in working with Deaf people based around the UK, are be able to access the tests for use in assessing Deaf people with dementia or who they think may have dementia.
As well as increasing access to the assessments the researchers created a BSL-led dementia information hub www.deafwithdementiahub.com (not yet available) to increase information, knowledge and awareness of dementia with and for the Deaf community. This website is innovative because it can be navigated in BSL. The project team used two Deaf actors to act out stories of Deaf people living with dementia. The stories are available with key inserts, presented by a Deaf researcher, that inform the viewer about key points in the story to expand knowledge and understanding.
A section on the webpage is aimed at professionals who might be encountering Deaf people with dementia for the first time or who are seeking further information. To further increase resources for professionals the team produced a guide on supporting a Deaf person with dementia, aimed at nursing staff in partnership with the Pennine Care NHS Foundation Trust. They also carried out a training session at Greater Manchester West NHS Trust on how to provide better care for Deaf people with dementia and their families.
The development and availability of all of the resources helps to increase knowledge about dementia in the Deaf community. Making Deaf people, their families and loved ones more aware of the signs and symptoms of dementia, as well as increasing understanding and resources for healthcare professionals will assist in the timely diagnosis of Deaf people with dementia.
What happened next? Future work and additional grants
The team continue to seek further feedback from Deaf people and professionals working in the dementia field, and also the Alzheimer's Society.
The University College London (DCAL) arm of the team is planning further research and adaptation of the cognitive tests and specialist tools for use across Europe. The team are also creating an online storage and information sharing system for holding the tests in BSL and patient results which will be an important clinical and research resource for the future.
The University of Manchester team are leading a project which addresses the development and testing of a BSL digital life story app to support enhanced communication and well-being for Deaf people with dementia.
As a result of the training day at Greater Manchester West NHS Trust, the researchers were approached to develop Good Practice Guidelines for supporting Deaf BSL users who are in NHS dementia settings.
How were people told about the results? Conferences and Publications
- Project group organised a two-day international workshop with 21 attendees from UK, Norway, Finland, Netherlands, France, Italy, Belgium and Ireland.
- Presentation given to professionals on a BSL level 6 course in Buxton, Derbyshire (Feb 2015)
- Presentation given to Deaf professionals at Deafplus, East London (May 2015)
- Poster presentation given at the Alzheimer's Society Research Conference (June 2015)
- Presentation given to BSL IAPT team, Preston (July 2015)
- Presentation given to the Dementia Action Alliance Conference, London (Sept 2015)
- Presentation given to MSc in Dementia Care cohort at the University of Manchester (Feb 2016)
- Representatives from the project team appeared in a documentary about dementia, which was made specifically for Deaf BSL users and launched online on 15th February 2015 on national television. http://www.bslzone.co.uk/watch/zoom-2014-i-remember-me/
- Dr. Atkinson gave a presentation about the Deaf with Dementia Project at the event: "Impact on Real Lives- DCAL - The First 10 Years"
- ;Four briefing documents were prepared for the Department of Health:
- DCAL Briefing: The need for a specialist national neurology service for Deaf people http://www.ucl.ac.uk/dcal/dcal-news/dcal-brief
- Impact UCL Case Study: Creating neuropsychological assessments and services for Deaf patients with neurological impairments http://www.ucl.ac.uk/impact/case-study-repository/ neuropsychological-assessments-for-the-Deaf
- DCAL Briefing: Deaf with dementia, from misdiagnosis and isolation to a future of good practice, UCL. https://www.ucl.ac.uk/dcal/documents/dwd-brief
- DCAL Briefing: Deaf with Dementia Project, UCL. https://www.ucl.ac.uk/dcal/projects/tabs/Deaf_with _dementia
- DCAL Newsletter: Cognitive Disorders Clinic, UCL. http://www.ucl.ac.uk/dcal/documents/dcal_newslette r_10
Young, A., Ferguson-Coleman, E. & Keady, J. (2014) Understanding dementia: effective information access from the Deaf community's perspective. Health & Social Care in the Community. doi: 10.1111/hsc.12181
Young, A.M., Ferguson-Coleman, E., Keady, J. (2014). Understanding the Personhood of Deaf people with Dementia: Methodological Issues. Journal of Aging Studies 31, 62-29. DOI:10.1016/j.jaging.2014.08.006
Ferguson-Coleman, E., Keady, J., Young, A. (2014). Dementia and the Deaf community: knowledge and service access. Aging and Mental Health, 18 (6), 674-682. doi: 10.1080/13607863.2014.880405
Atkinson J, Denmark T, Marshall J, Mummery C, Woll B (2015). Detecting Cognitive Impairment and Dementia in Deaf People: The British Sign Language Cognitive Screening Test. Arch Clin Neuropsychology 30(7):694-711. doi: 10.1093/arclin/acv042. Epub 2015 Aug 4.