Deaf British Sign Language (BSL) users can face significant barriers to getting a timely dementia diagnosis. A service in Bristol is working with Deaf people to become more accessible.
The Dementia Wellbeing Service in Bristol provides support, guidance and help to people with dementia and their families. It’s delivered by Alzheimer’s Society and the Devon Partnership NHS Trust.
Roxanne Holton is one of the Community Development Co-ordinators working with marginalised communities in Bristol to understand barriers and make the service easier for them to access.
Through this work, it became clear that the service wasn’t reaching the culturally Deaf community, whose first language is often British Sign Language (BSL) or another signed language.
‘We started networking and building relationships with Deaf-led groups, Deaf health professionals and Deaf BSL users to build up trust. And we did a lot of research to educate ourselves about Deaf culture,’ says Roxanne.
‘We organised a consultation event to understand the barriers that Deaf people affected by dementia face in accessing dementia advice and support.’
The team found that dementia information doesn’t always reach the Deaf community because it’s usually written in English or translated too literally. BSL is very different to English in its grammar, structure and the amount of words or signs used.
Since the Dementia Wellbeing Service joined forces with the local NHS Specialised Deaf Service, a Deaf BSL user can come directly to them for a diagnosis process that is in BSL and which respects Deaf culture and language. The person can be referred by their GP, relative or friend, or they can refer themselves.
‘People in the Deaf community report that they don’t feel GP’s surgeries are always accessible to them and understanding of their needs,’ says Trish Caverly, another Community Development Co-ordinator in the team.
‘So, while they will still need to link with their GP for certain tests, we invite Deaf BSL users to self-refer to our service.’
If a Deaf BSL user is worried about their memory and thinks they might have dementia, they will be seen by a dementia specialist, such as a clinical psychologist, from the Dementia Wellbeing Service.
They will also see Mary Griggs, Consultant Clinical Psychologist and Clinical Lead from the Specialised Deaf Service, who is hearing but fluent in BSL.
James Main is a Consultant Old Age Psychiatrist and Clinical Lead who oversees the medical specialists at the Dementia Wellbeing Service.
‘Historically, healthcare has tended to approach deafness as a condition and an obstacle to care, rather than a community with its own language and rich culture,’ he says.
‘Early recognition is crucial to providing people with dementia with the support they need to live their life how they wish to. But a person using BSL can receive a delayed diagnosis, and the dementia might even be missed until the late stages.
‘We really need to bridge the gap and make people feel that they are welcome and can benefit from services.’
The professionals involved in this partnership work are continuing to develop their knowledge of each other’s specialist fields.
‘I have certainly realised that my own understanding of how dementia affects a person early on relies heavily on language use, so I need to approach assessment for a BSL user differently from the outset,’ says James.
Mary explains that Deaf people have a higher risk of experiencing problems with mental health. This needs to be understood in its own right when looking at symptoms that suggest someone could have dementia.
‘Deaf people often have BSL as a first language and English as a second language,’ says Mary. ‘It’s not only that the assessments themselves are often in English, but the results of tests are based on scores for hearing people.’
Mary also underlines the importance of providing a culturally appropriate service.
‘I think many marginalised communities find access to services difficult, and can be left more distressed and ill-informed than they need to be,’ she says.
‘Having a specialist assessment process helps us ensure that the Deaf community can start to experience equity in services already available to hearing people.’
Lots to do
As awareness of the newly accessible service builds within the Deaf community, early feedback has been positive.
Trish says that one Deaf BSL user, who cares for a Deaf person with dementia, praised the process their relative went through being diagnosed by the service. They also hoped that more people in the Deaf community come forward to use it.
To help make sure that Deaf people know what’s available, the Dementia Wellbeing Service has produced information about what it offers in BSL. This is also available in Easy Read, a format that uses simple English alongside clear images.
The team will work with Deaf-led organisations in Bristol to highlight the service, answer people’s questions about dementia and share the Society’s new BSL films about dementia.
‘We want people to feel comfortable and confident when they come into the service – that’s crucial,’ says Trish, who also plans to develop the longer-term support offered to Deaf BSL users affected by dementia.
‘We’ve done a lot, but there’s still a lot to do.’
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