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Abstract
The theoretical approach presented in this paper describes a novel experimental-theoretical methodology to conceptualise pain in people with dementia. Existing procedures for assessment of pain rely on subjective self-report using pain questionnaires and rating scales that have proven to be highly problematic where a person has dementia. Consequently, pain in people with dementia can be undetected and/or undertreated. To address that, we have developed an alternative experimental approach that builds on theoretical and methodological precedents from the arts, humanities and social sciences, for instance, visual thinking strategies, creative thinking or two-step flow of communication. Based on this approach, we designed an experimental workshop setting to ingrate these methodologies to explore pain and its expression in people with dementia. This had led to a new definition of pain as an interruption of the socially mediated process of bodily meaning-making. Furthermore, our experimental methodology could equally well be applied as a training method, where professional staff can intervene into existing implicit meanings and understandings of medical issues. These results emphasise that the future of pain research needs to consider the relational aspects of pain more seriously.
- dementia
- pain management
- fine art
- Medical humanities
Data availability statement
No data are available. The consent obtained from the participants covered only access to and data sharing within the research team. In accordance with data protection policies, it did not authorise the sharing of data with third parties.
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Data availability statement
No data are available. The consent obtained from the participants covered only access to and data sharing within the research team. In accordance with data protection policies, it did not authorise the sharing of data with third parties.
Footnotes
X @TomDening
Contributors This article is the result of a collaborative effort among several team members, each of whom has made substantial contributions to its completion: CM (lead author) was responsible for conceptualising the study, leading the research design and overseeing the project. He played a pivotal role in the analysis and interpretation of data and drafted the initial manuscript and is responsible for the overall content. KHD (co-author) contributed significantly to the data collection process and was involved in the data analysis. She assisted in drafting the manuscript and revising it critically for important intellectual content, focusing specifically on the qualitative analysis section. TD (co-author) was instrumental in the literature review process, contributing to the formulation of the research question and hypothesis. He also played a key role in interpreting the results in relation to existing literature and contributed to writing the discussion section of the manuscript. BG (co-author) provided expertise in the specialised analytical methods used in the study. He offered technical guidance during the project and contributed to the writing and revision of the methods and results sections. Each author has approved the final version of the manuscript and agrees to be accountable for all aspects of the work, ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Funding Supported by a grant to CM from Alzheimer’s Research UK East Midlands network (ref no. 1000393).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.