Dementia and communication: Supporting family carers in Wales and England

Bergstrom, Axel 2024. Dementia and communication: Supporting family carers in Wales and England. PhD Thesis, Cardiff University. Item availability restricted.

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Abstract

This thesis investigates how Empowered Conversations (EC) (Morris et al., 2020), a communication course for family caregivers of people living with a dementia (PLwDs) that is currently only offered in Greater Manchester, could be adjusted to better suit the needs of family carers living in Wales. The data comprises interviews with family caregivers in Greater Manchester who have participated in EC, carers in Wales who have not, and two supplementary focus groups of family carers who live in a rural area of North Wales. The interview data were analysed using a reflexive thematic analysis. The focus group data analysis used directed content analysis. The analyses are interpreted through the lens of two frameworks that underpin EC, namely the Communicative Impact model (Wray, 2020) which focusses on how and why carers use communication, and Mentalization (Luyten & Fonagy, 2015), a psychological model of how carers understand others and themselves. The findings suggest that strategies taught in EC for overcoming difficulties in dementia communication are likely to be as beneficial in Wales as in Greater Manchester. Specifically, mentalization training improves carers’ ability to develop solutions to issues that emerge over time in the dementia trajectory, and it therefore meets a universal need. However, some issues particularly relevant to Wales were identified. In order for EC to better suit the need of carers in Wales, especially those living in rural areas, it should incorporate additional strategies for communicating with healthcare professionals and it should promote peer-support between participants to a greater extent. Consideration is also given to the value of offering EC through the medium of Welsh. In discussing and conceptualising the outcomes theoretically, three new insights are offered. First, carers improve communication through changing their communicative goals. This is done by adjusting the perception of what communication realistically can do and learning to anticipate when similar adjustments will be needed, before anything goes wrong. Second, changes to communication are underpinned by information that stems from situations where carers are unsuccessful in achieving their goals. Mentalization aids in this process. Finally, the way third parties communicate with PLwDs can have impact by proxy on carers’ experience of ii dementia and communication. In addition, the concept of social reserve, part of Wray’s (2020) Communicative Impact model, is applied to empirical evidence, which has not been done before. The concept is shown to provide an excellent frame for mapping how carers’ social support impacts on their experience of dementia communication. Overall, the findings indicate that Wray’s and Fonagy et al.’s frameworks can provide explanations for how and why dementia communication is so difficult. Moreover, they indicate that the communicative strategies taught in EC, inspired by these frameworks, can result in individually tailored long-term improvements to communication.

Item Type:	Thesis (PhD)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > English, Communication and Philosophy
Subjects:	P Language and Literature > PE English
Funders:	Economic and Social Research Council (ESRC), Health Care Research Wales, Empowered Conversations (AGE UK)
Date of First Compliant Deposit:	12 May 2025
Last Modified:	13 May 2025 17:57
URI:	https://orca.cardiff.ac.uk/id/eprint/178214

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