Managing Selfhood in Dementia: Interrogating the operationalisation of identity work & its relationship with media representations

The goal of this project is to holistically interrogate the concepts of 'identity' and 'concern' (or
dementia worry) within dementia communication and media representation. Thus there is a twofold
focus, guided by the key research questions:
RQ1) How are issues of identity, and self, managed in communication with people living with a
dementia? What are the interactional components of identity work?
RQ2) How are ideas and expectations about the relationship between memory, self and identity
constructed in contemporary media representations of dementia?
RQ3) What is the relationship between media representations of dementia and 'dementia worry',
and how do gender, age, and other characteristics inform this relationship?
Methodologically, to address RQ1, this project focuses on analysis of a pre-existing video-data
corpus, comprising recordings in domestic contexts (specialist dementia care home and the homes
of family dementia carers) and a memory clinic. These data, in combination, will allow for forensic
analysis of how 'self'/'identity' are operationalised across key dementia care contexts.
To explore RQ2 and 3, recent media coverage of dementia will be analysed for recurring themes.
Vignettes/examples of key media messages about brain health/dementia risk then will comprise
part of an attitudinal online questionnaire targeted at a large and broad sample of over 18s. This
will substantively add to knowledge about the relationship between dementia media
representation and individuals' perceptions of risk and 'concern' about a most feared disease.
Moreover, the questionnaire will be used as a recruitment tool to sample a diversity of
respondents (in terms of age, gender, ethnicity, personal connection to an individual with
dementia) for follow-up interview/focus group (n=30) to gain in-depth insight into the impact of
contemporary media representation on perception.
Outcomes: This two-fold focus will make a significant contribution to understandings of dementia
care in practice, and the way this relates to media representations. Findings will show how identity
and self are managed communicatively in a range of contexts. Theoretically, this will add to the
feminist literature on care, and further notions of care as intersubjective practice rather than the
'property' of social groups/roles. In addition, by analysing the production and receipt of media
messages about dementia within the neoliberal healthiest frame, there will be a further theoretical
contribution to notions of 'self-care'.
Outputs: The findings of the project will be disseminated via high quality academic journal articles
and accessible project findings summaries will be sent to participants and key stakeholders such as
dementia charities and health and social care professionals. A training workshop on maintaining identity in dementia will also be developed and piloted with dementia carers.