Dementia in the minds of characters and readers
Award Number
AH/S001476/1Programme
Research GrantStatus / Stage
CompletedDates
26 March 2019 -30 July 2022
Duration (calculated)
03 years 04 monthsFunder(s)
AHRCFunding Amount
£189,126.00Funder/Grant study page
AHRCContracted Centre
Queen's University of BelfastPrincipal Investigator
Jane LugeaPI Contact
J.Lugea@qub.ac.ukPI ORCID
0000-0002-8274-3857WHO Catergories
Models across the continuum of careDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 786 |
|---|---|
| Researcher | Reside Team |
| Published | 24/07/2023 |
Data
| Award Number | AH/S001476/1 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20190326 |
| End Date | 20220730 |
| Duration (calculated) | 03 years 04 months |
| Funder/Grant study page | AHRC |
| Contracted Centre | Queen's University of Belfast |
| Funding Amount | £189,126.00 |
Abstract
One of the most rewarding aspects of reading a novel is the experience of seeing the world through the eyes of a character, especially when it offers a new or unusual perspective, known as ‘mind style’ in literary linguistics. This is the first comprehensive mind style analysis of dementia narratives, including Elizabeth is Missing (Healey 2015), The Corrections (Franzen 2010), The Wilderness (Harvey 2010) and Still Alice (Genova 2007) amongst others. Because of the wide-ranging ways dementia can be experienced and depicted, this project will push the boundaries of the mind style model, developing its scope and analytical power.
However, this project also investigates how literary language depicting the minds of characters with dementia can provide a ‘way in’ to understanding a socially stigmatised condition associated with loss of personhood. Some might argue that fictional representations of dementia have little relevance to real experiences: our contention is that dementia is different for everyone, so there is no ‘real’ means of measuring representative accuracy, nor should fiction conform to ‘reality’. Indeed, fiction is unique in the way that it lets us access the workings of other peoples’ minds so closely. To illustrate, we offer a short vignette of how Jonathan Franzen, in his award-winning book The Corrections, uses mind style to take the reader inside the mind of Alfred, a character with dementia:
Alfred was standing in the master bedroom wondering why the drawers of his dresser were open, who had opened them, whether he had opened them himself. He couldn’t help blaming Enid for his confusion. For witnessing it into existence. For existing, herself, as a person who could have opened these drawers.
Alfred’s confusion and agitation is iconically represented in the listed questions ‘wondering why…who…whether…’. The use of repetitive, speech-like, ‘live’ sentence constructions ‘for-, ‘for-‘, ‘for-‘, involves us in Alfred’s search for blame. In our pilot study (Lugea et al 2017), we asked participants in a Reading Group to listen to a longer version of this extract, underlining features of interest, completing a short questionnaire, and engaging in a group discussion. A participant living with dementia reported, ‘this is my life’ and other readers reported feeling as if they had access to Alfred’s thoughts and experience. This vignette illustrates a major advantage of using literary representations of dementia: fictional mind styles allow us to show, rather than tell people what it is like to experience dementia.
Our project uses fictional extracts which display features of dementia mind styles to explore the potential of fiction to unlock deeper understanding and empathy towards people with dementia. The Reading Groups will include:
1. people in the early stages of dementia
2. caregivers
3. social work/policy students
4. the general public
The readers’ responses will inform our analyses of the fictional texts, developing the mind style model itself and providing further empirical insight into how real readers interact with fictional characters.
The findings will be shared in academic, social policy and cultural settings. We will publish a booklet to be used in ongoing dementia training and support. The project will culminate in a Dementia Fiction Festival, celebrating the boom of fiction on the topic and contributing to the growing public awareness of the condition. The texts analysed, as well as works from local and international authors, will be showcased through live readings, performances and screenings. With the support of dementia charities, the events will be dementia-friendly, giving people living with dementia a rare chance to engage in directly-relevant cultural activities. Ultimately, we provide a method which could be replicated to improve cultural understandings and empathy towards dementia in other contexts, and similar illnesses in any context.
Aims
Our project uses fictional extracts which display features of dementia mind styles to explore the potential of fiction to unlock deeper understanding and empathy towards people with dementia. The Reading Groups will include:
1. people in the early stages of dementia
2. caregivers
3. social work/policy students
4. the general public