Obstacles to the early identification of Dementia

Overcoming obstacles to the early identification of Dementia in the signing deaf community

“Deaf with Dementia” was a research project funded by the Alzheimer’s Society and developed by The University of Manchester alongside the Deafness, Cognition and Language Research Centre (DCAL) at University College London, City University, and the Royal Association for Deaf people.

Project aims

This research project was funded by Alzheimer’s Society over 3 years with several partners. University of Manchester was the lead partner alongside Deafness, Cognition and Language Centre, London, City University London and Royal Association for Deaf people. There were three research streams:

1. to develop a cognitive screening test to identify dementia with Deaf BSL users;
2. to find out more about what the Deaf community know about dementia and
3. to find out about the everyday lives of Deaf people with dementia and their families.

The cognitive screening test has been established and has been used within a specialist clinic in London since 2012. 26 Deaf BSL users who did not have dementia were asked in focus groups about the definition of dementia, how to identify if a person has dementia and where to go for support and to support one another.

Findings

Their knowledge was fair, but there was a thirst for more resources in BSL as there was a paucity of online information about dementia at the time.

There was no knowledge of hearing organisations that could offer support, so the local Deaf club was considered the best place to go for advice and support. 5 Deaf people with dementia and their families were met twice in their homes to discuss their everyday lives with dementia.

Everyday challenges

Participants shared that being Deaf had its own challenges with communication, which they were used to as a lifelong experience. However, the real challenges were linked with receiving appropriate support from hearing professionals who did not book interpreters for appointments; did not use sign language themselves; or had difficulties with using pen and paper, which led to a lot of frustration with hearing professionals.

Additionally, the families shared that accessing the Deaf community was also difficult as the environment was not a supportive one for either Deaf carers or for their family member with dementia. This led to them feeling it was better to stay at home, as they felt the Deaf community did not fully appreciate how to offer help or support to families living with dementia.

More information

• Visit project in Research Explorer