Muddles and puzzles: Metaphor use associated with disease progression in Primary Progressive Aphasia

ABSTRACT

Background

Primary Progressive Aphasia describes a language-led dementia and its variants. There is little research exploring the experiences of living with this disease. Metaphor, words that represent something else, have been studied extensively in health-related narratives to gain a more intimate insight into health experiences.

Aims

This study explored the metaphors used spontaneously by people with PPA, their care partners (family), and speech and language therapists/pathologists (SLT/Ps) providing support along the continuum of care.

Methods & Procedures

This study examined two previously collected data sets comprising naturalistic talk where metaphors were not the specific focus, the first from focus groups conducted with people with PPA and their families and the second from focus groups conducted with SLT/Ps working with people with PPA. Transcribed data were analysed for metaphor use through an iterative narrative approach.

Outcomes & Results

In all, 237 examples of metaphorical language were identified in the data, with 14 metaphors from people with PPA, 116 from the families and 106 from SLT/Ps. Different metaphors were used by participants to describe their experiences depending on which variant of PPA they were living with, and people also described their disease differently over time. SLT/Ps also used metaphors, however, their language reflected the structured, professional perspective of delivering speech and language therapy services.

Conclusions & Implications

SLT/Ps should listen for and recognise the metaphorical language used by people with PPA and their families to ensure therapeutic alignment, see beyond the PPA to recognise the individual’s needs, and provide person-centred and empathic support.

KEYWORDS:

• Primary progressive aphasia
• dementia
• language
• speech and language therapy
• Metaphor

Acknowledgements

We would like to thank all the participants with PPA and their families and care partners who participated in the original focus group studies. We would also like to acknowledge participant SLT/Ps from the International PPA SLT/P network who participated in the original focus group studies also.

Declaration of interest statement

The authors report there are no competing interests to declare.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

AV is funded by an NIHR Advanced Fellowship NIHR302240. Part of this work was funded by the Rare Dementia Support Impact project (The impact of multicomponent support groups forthose living with rare dementias, ESRC) and is funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UK Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, United Kingdom Research and Innovation (UKRI), the NIHR or the Department of Health and Social Care. Rare Dementia Support is generously supported by the National Brain Appeal (https://www.nationalbrainappeal.org/).