Metaphorical Narratives in Dementia Discourse

Project Information

MeNDD

Grant agreement ID: 845119

DOI

10.3030/845119

Project closed

EC signature date 12 April 2019

Start date 1 September 2019

End date 13 July 2022

Funded under

• EXCELLENT SCIENCE - Marie Skłodowska-Curie Actions

Total cost

€ 175 572,48

EU contribution

€ 175 572,48

Coordinated by

UNIVERSITEIT VAN AMSTERDAM
Netherlands

Periodic Reporting for period 1 - MeNDD (Metaphorical Narratives in Dementia Discourse)

Reporting period: 2019-09-01 to 2021-08-31

Summary of the context and overall objectives of the project

Summary

Project Number: 845119
Project Acronym: MeNDD
Project title: Metaphorical Narratives in Dementia Discourse


This Marie Skłodowska Curie Action (MSCA) Individual Fellowship is titled Metaphorical Narratives in Dementia Discourse, acronym MeNDD. How people talk about dementia really matters, for it changes how we all feel and behave towards people with dementia. The project MeNDD is working to help everyone to talk about dementia better. The research fellow and her associates imagine a world where the challenges of dementia are not compounded by stigmatising language and attitudes.

In dementia, as previously with cancer and AIDS, metaphors, such as ‘cognitive decline’, and ‘the living dead’, frame the narrative of the disease, influencing how dementia and people living with dementia are negatively perceived by society and thus also how they may negatively perceive themselves. The perspectives of people living with dementia are frequently marginalised in public debate. However, no public debate is ultimately responsible unless there is a clear understanding of what it is like to live with dementia, and unless it considers people with dementia’s own words on the subject.

MeNDD focused on how dementia stigma affects people with dementia and their associates (e.g. both informal and formal caregivers) and how the expression of people with dementia’s negative emotions can help people with dementia in coping with and living with their illness. MeNDD:

• outlined the key aspects of dementia stigma discussed by the literature in the light of a comprehensive framework for dementia stigma that is useful to better integrate and advance research.
• analysed the distinct reasons behind the negative emotions of people with dementia and highlighted how they can be challenged and possibly accepted.

The ultimate goal of MeNDD project is to raise awareness about the importance of responsible language use in dementia discourse at an individual and social levels. On an individual level, this project shows that we need to develop a deeper understanding of how people living with dementia see themselves, talk about themselves, and wish to be seen. On a societal level, this project highlights that the spread of negative stereotypical metaphors (such as ‘the living dead’ and ‘the silent tsunami of dementia’) increases the risk of stigmatisation of people with dementia and hinders the development and usage of respectful language in dementia communication.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

The fellow worked at the Metaphor Lab Amsterdam (MLA) embedded in the Amsterdam Centre for Language and Communication (ACLC) at the University of Amsterdam (UvA). Along with the scientific objectives of the project, the other main objective of the fellowship was to enhance the development and future career prospects of the fellow. The overall objectives have been addressed via four working packages (WP): WP1-Management (monitoring and achieving optimal action); WP2-Training and transfer of knowledge (strengthening and widening the fellow’s research skills and supporting her in gaining independence and developing her career further); WP3-Research (investigating the use of metaphorical narratives in dementia discourse; examining the status of stigma of dementia, and analysing the role negative emotions in coping and living with dementia); WP4-Dissemination (disseminating the fellowship’s results to both wider and target audiences). These objectives have been fully achieved.
In WP1, a mid-term project report and a final report were delivered.
In WP2, in addition to completing 45 training activities and acquiring new methodological tools needed to conduct the research, the fellow obtained the following qualifications:
• Scientific National Qualification for Associate Professorship awarded by the Italian Minister of Instruction, University and Research.
• Position as Research Associate at the Imperial College of London (United Kingdom).
In WP3, we focused on three main studies. In the first study, we analysed two main metaphorical narratives in dementia discourse. The outcomes were presented at two workshops, in the Netherlands and in Italy. Following a first submission, the resulting article is currently being revised and will be resubmitted. In the second study, we focused on the stigma in dementia. The findings related to this study were selected for the Conference of Science Communication in the Netherlands and the International Conference on Communication in Healthcare. After a lengthy review process, the scientific article will be resubmitted in a revised form. In the third study, we analysed the role of negative emotions in people with dementia’s lives. The findings were presented at the MCAA Annual Conference and at the19th International Conference on Communication in Healthcare. The published article is: Frezza G., Veldhuis, J., & Burgers, C. (2022). Expressing negative emotions as a key to living with and coping with dementia. SSM - Qualitative Research in Health, 2, 100129. DOI:10.1016/j.ssmqr.2022.100129.
In parallel with this study, together with a group of researchers of the Metaphor Lab, we investigated the audience’s perceptions of metaphors about Covid-19 in Germany, Italy and the Netherlands. The published article is: Brugman B., Droog E., Reijnierse G., Lyman S., Frezza G., Renardel de Lavalette K. Audience Perceptions of COVID-19 Metaphors: A Cross-Country Perspective. Metaphor and Symbol, 37:2, 101-113, DOI: 10.1080/10926488.2021.1948332.
In WP4, the dissemination was directed to both broad and targeted audiences and included local (Amsterdam), national (NL), UK, and European levels, expanding the network of the project. The activity included a project website, a workshop, book presentations, presentations to conferences, videos, a magazine interview and social media’s posts. The project website is available on the following address: https://www.menddproject.com.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The Covid-19 pandemic has had a significant impact on the entire implementation of the fellowship, both in the workplace and globally (such as travel and social contact bans). Obstacles in pursuing and disseminating research necessitated constant adjustments to the original proposal’s strategy and plan. The fellow made a special effort to maintain high standards throughout the work process and progress, and she did her best to ensure that the project was carried out in accordance with legal and adequate measures. All the core objectives and tasks outlined in the MSCA application have been met. The list of deliverables far exceeds expectations. The new collaborations and networking activity developed during this fellowship together with the additional articles that are currently in development will add to the impact of these results in the coming future. The added value brought by this fellowship in terms of advocacy for people with dementia and of responsible metaphor use in dementia was developed in collaboration with international research groups concerned with the development of dementia social health to tie fundamental and applied research to societal relevance and to EU H2020 emphasis on Responsible Research and Innovation and healthy ageing.

Image of MeNDD's project website's home page