Emma Ferguson-Coleman is a researcher in the University of Manchester researching ‘Deaf people with Dementia’. Emma discusses the need for cultural adaptations to the assessments for Deaf people, and how we can support a Deaf person living with Dementia in the community.
For more information on BSL assessments, click here https://youtu.be/B18PsN55PWs . You can contact Emma Ferguson-Coleman at firstname.lastname@example.org or find out more about the Deaf People with Dementia Research Project here research.bmh.manchester.ac.uk/deafwithdementia/
You can also find more information and help with Dementia in BSL via our dedicated Dementia section of our website bda.org.uk/dementia
Lucy – Hello, Lucy from BDA Scotland here. I have somebody new to talk to today. I wonder - could you introduce yourself?
Emma – Of course; I’m Emma. Emma Ferguson-Coleman.
Lucy – Thank you for coming. Could you explain to those watching a bit more about who you are and what you do?
Emma – Well, I’m a researcher, based at the University of Manchester.
Lucy – And what is it that you do there?
Emma – I’m researching Deaf people with dementia and I’ve been doing this for about 8 years now. I’ve met many Deaf people and asked them what they know about dementia, what they think it might mean for someone. I’ve also spoken to several Deaf people who are currently living with dementia and they’ve kindly shared their stories with me, explaining what it’s been like for them, living with dementia every day.
Lucy – And have you found it easy to find people with dementia to take part in your research, or has that been difficult?
Emma – Well, often, Deaf people have what we call a ‘delayed diagnosis’ of dementia. This can happen because when Deaf people initially approach their GP about concerns, it can be difficult to explain they are having memory problems, for example, or that they have noticed a worrying difference in their partner of family member. The families I have spoken to previously have said that they ran into communication problems when trying to talk to their GP. There are also problems during hospital assessments where hospital staff need to ask the Deaf person to answer questions of ask other family members what they have noticed, but they have not booked an interpreter. Having to read and respond to the questions in written English is not ideal. Many Deaf people won’t understand them, so that’s not a suitable approach. That’s why the specialist clinic in London was set up – to assess Deaf people directly through BSL, rather than through written English, or through an interpreter. That’s a better approach.
It’s also important to think about what happens after diagnosis – how do we support a Deaf person with dementia to live well within the community? The wider Deaf community needs to be more aware of what dementia is, because if they understand better, they can support those people to remain a part of the Deaf community for as long as possible.
Lucy – Do you feel there’s a big difference between assessments designed for Deaf people and hearing assessments then?
Emma – Yes, definitely. The questions in assessments for hearing people are often not suitable for Deaf people. For example, they might ask who the current Prime Minister is. Well, of course, it’s Theresa May, but a Deaf person might not know how to spell her full name, even though they know who she is and can give a full description of what she looks like, and perhaps her initials as well. But a hearing clinician working through an interpreter would be expecting to hear the name in full, and not a description and so without any cultural adaptation of the questions; it means the assessment is unfair for the Deaf person.
Lucy – So the assessments have been modified to meet Deaf people’s understanding? How do they know it’s suitable for Deaf people? That must be quite difficult because Deaf people are so varied; some might be oral, some use sign, etc. How can you devise one assessment that suits them all? It’s easier with hearing people I guess, because they’ll all know English.
Emma – Yes, that’s why hearing assessments aren’t suitable. The questions need to be culturally modified. Dr Joanna Atkinson, who works at this clinic based in London, has devised BSL assessments which have a different way of asking questions and a different way of assessment, through BSL. If people want more information about that, there’s a link with a video which explains more about how the specialist hospital carry out their assessments. It doesn’t go into detail about the questions, but it’s a good, Deaf-friendly explanation of why they have done this work.
Lucy – Thank you so much for coming. That’s really useful to know. If anyone watching has any questions for Emma, you are welcome to contact her directly; I’ll add her email address at the bottom of the video. You can get more detail from her. I hope that’s ok Emma?
Emma – Yes of course. I’m happy to answer your questions any time. Thanks for watching.
Lucy – thanks. Have a nice day. I hope you’ve found this information useful. Goodbye.
Emma – Bye.