Neighbourhoods and Dementia: A Mixed Methods Study

This study was part of the 5-years long project “Neighbourhoods and Dementia” funded by the ESRC/NIHR. This work programme aimed to develop a life story tool for Deaf people with dementia and their families.

Our methods

Neighbourhoods and Dementia Study had 7 work programmes of which we were one, called the “Deaf with Dementia Life-Stories Project”. This study ran for 5 years and was funded by ESRC NIHR. The aim was to develop a life story tool for Deaf people with dementia and their families. Three approaches were taken towards this:

1. a conceptual thematic review of storytelling within Deaf communities on a global level to ascertain the purpose of this activity, for example, humour, building identities, building resilience through being within the mainstream;
2. asking Deaf carers to share their experiences of how they visually support Deaf people with dementia while knowing of their possible challenges with communication, language, understanding everyday tasks, and how Deaf people can engage well with Deaf people with dementia. Bearing in mind those challenges,
3. we met with Deaf people with dementia and their families to navigate life story work together but were faced with several issues. Storytelling celebrates our cultural heritage, our Deaf histories and enhances positive positioning for Deaf people.

Deaf carers told us that it was mandatory to be visual beings with Deaf people with dementia and by embodying instructions and respecting their era of strength linguistically, keeping their old signs and not forcing the use of modern version of those signs, that they became respected.

It was clear that in everyday tasks, it was better to perform the actions required rather than expecting the person to understand the instructions in BSL.

Our findings

Deaf carers and Deaf people with dementia looked at visual aids, such as photographs and videos, at home and three points were highlighted:

1. living with dementia together as a family was detrimental to their relationships, whether they were parent/child or spousal, but by doing these activities together, their ties were re-cemented again.
2. Deaf carers said they were lacking in appropriate support so used the allocated time for life story work to clarify their own support needs and
3. it became clear that through storytelling, Deaf people with dementia felt their identities were re-ignited, re-established, and restored while their families felt that their family member was valued as a person again and not just a person living with dementia.

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