On 19th May 2025, CHAD and the Faculty of Public Health hosted this webinar with Dr Edward Tolhurst, an Associate Professor in Dementia, Ageing and Care at the University of Staffordshire.
Ed began by defining personhood as a humanistic sense of recognising the person and their relationships, acknowledging their unique sense of self, even when cognitive abilities decline. There is also the concept of couplehood, where the couple is seen as the primary unit of analysis. Studies drawing on this concept tend to offer a positive view of relationships. Not everyone is in a spousal relationship, so this concept does not apply universally.
In the second half of this webinar, Ed gives an overview of his studies, investigating how couples negotiate relationships and care following a diagnosis of dementia in men. It was highlighted that a joint interview approach, with the couple interviewed together, can provide insights into subjective perspectives and how these are negotiated in conversational exchanges.
Ed’s research highlights that men with dementia often refer to ongoing activities and independence, thereby seeking to avoid being positioned as passive and vulnerable. Female carers tend to convey intense practical and emotional difficulties. These are associated with moral challenges, as carers can feel socially judged, as care is culturally assumed to be a ‘natural’ female role. This can generate a collision of preferred narrative strategies: men with dementia seek to diminish the impacts of the condition by asserting a positive perspective of stoicism, or ‘fighting back’; while female carers present a more negative perspective that conveys the intense challenges of caring, thus resisting perceived moral judgements.
The takeaway message from this webinar is that it is vital to avoid gender-neutral perspectives of dementia and care. However, it is also essential to avoid a binary and stereotypical representation of gendered experience. A gendered representation is compatible with acknowledging individual dispositions and requirements. The concept of relational subjectivity is arguably more effective than couplehood for capturing how couples are comprised of two individuals and their complex interactions.
To read more about this research, please see below and visit the links. The articles are open access so everyone can read them:
Tolhurst, E., Weicht, B. & Kingston, P. (2017) Narrative Collisions, Sociocultural Pressures and Dementia: The relational basis of personhood reconsidered. Sociology of Health and Illness, 39(2): 212-226. Available from: https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12523
Tolhurst, E. & Weicht, B. (2023) Navigating the Experience of Dementia: The experience of male spousal carers. Healthcare, 11, 2492. Available from: https://doi.org/10.3390/healthcare11182492
You can download the speaker’s slides here.
A recording of the webinar is available below.
