Work programme 7

Deaf with dementia life stories project

The Deaf with Dementia Life Stories project set out to explore meaningful life story work with Deaf BSL users with dementia and their care partners, so that this minority population could re-establish their identities as Deaf citizens with their own place in history.

Deaf carers were consulted to find out specific cultural elements that need to be considered when communicating with Deaf people living with dementia.

Deaf people living with dementia and their families took part in two consecutive interviews, where they brought their own photographs and objects for culturally appropriate reminiscence opportunities.

Achievements

• We conducted two focus groups with Deaf carers of Deaf people living with dementia to explore and discuss cultural elements of communicating with Deaf BSL users with dementia. This data has generated some unique tactile and non-verbal techniques that are appropriate for this minority population.
• Three full sets of interviews were carried out with Deaf people living with dementia and their care partners. These interviews highlighted the key events in Deaf people’s lives and by discussing these with one another, the Deaf person with dementia repositioned themselves as the family member (rather than just the person with dementia) while also asserting their personal experiences of accessing everyday mainstream and community environments.
• Deaf and hearing carers valued the novel ways in which they were able to view their parent or their spouse as the diagnosis of dementia had superseded their existing position within the family.

What next?

• Extended data analysis for the interviews with the families.
• Writing up of two papers from this analysis ready for publication a) from the focus group data that informed the tool that was trialled and b) from interviews with Deaf carers and people living with dementia about how they were using various aspects of life story work in their everyday lives supported by the input of the project.
• A user dissemination conference within the Deaf community amongst Deaf carers and Deaf people living with dementia and associated professional service providers. The aim is to ensure that the learning from this project is disseminated in the first language of those who might benefit from the study as their access to information in written or spoken English is severely restricted. To have a face to face event that is Deaf-led in BSL would ensure linguistically and culturally appropriate knowledge transfer.