Making a dementia service more accessible to Deaf BSL users

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.’

Roxanne Holton, Mary Griggs and James Main

Roxanne, Mary and James.


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.

Feel welcome 

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.

Specialist process 

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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Hi, I'm actually looking for some advice. My auntie has started forgetting a lot, she's become incontinent, she can get frustrated at not remembering things or someone, she sleeps a lot and asks for her mum a lot. She lives with her husband who's middle 80s and he's literally doing everything for her. He's starting to really struggle. I unfortunately have a lot of health issues and unable to help due to poor mobility and family work full time etc. My auntie is deaf and her husband says he worries about getting her help incase that person doesn't know how to communicate with her. we highly suspect she has dementia and also being deaf she shuts off if she doesn't want to communicate. I was hoping for some information of where to start in getting her some help? We are all just completely lost. He tried taking her the doctor but she Just won't go. We are all from Liverpool. My auntie and uncle live in crosby area. Is there any place local that we could get in touch with that could help with the dementia and also her being deaf?

Hi Victoria,

We're very sorry to hear this, it sounds like it's been really difficult for you and your family.

It's difficult for us to provide specific advice without knowing more about your situation, so we'd strongly recommend you call our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They can listen to you, find out more about your circumstances, and provide specific advice to help, as well as information on support that might be available to you.

You can find more details about the support line (including opening hours and other methods of contact) here:

We hope this helps for now, Victoria. Please do call our support line.

Alzheimer's Society website team

Hi Victoria, read your comments and it’s just like my mum, she is 90 years old and deaf and me deaf as well. We live in a long distance. She won’t go out and she has got carers seem okish apart she is not happy if carer bring a new carer to introduced to her. She is panicking if more people in her house. She is not very good with communication or BSL, she use her own sign language. They keep bring some new carers which she already had 6 different carers, made her very confused and this morning she was in tear and told me no more bring other carers which is finding very upset. I contacted her boss and explained this situation she prefer one carer at times only. She replied and said it’s challenge for other carers, she has no awareness of deaf dementia people. I did try my best to teached a couple of them BSL basic but they keep being other new carer who has no experience of deaf communicate which make me very stressfully. And like Victoria said about her own health problem just like me.