MeNDD Research

 
 

Research

Study One - Metaphorical narratives in dementia discourse.

The intention of the first study is to analyse the two main metaphorical narratives in dementia discourse. Metaphors, such as ‘cognitive decline’, and ‘the living dead’, frame the narrative of dementia, influencing how dementia and people living with dementia are perceived, and, thus, how they may perceive themselves. This study highlights the main metaphorical patterns at use in dementia public discourse via corpus and metaphor analysis.

Part of the analyses of this study were presented at the following workshops:

FREZZA G., The ‘D’ word and its metaphorical narratives. Risk and responsibility in communicating dementia from stigma to prevention. NIAS Workshop - What is Translation? Exploring the Missing Link Between Neuroscience and Psychiatry, Lorentz Center, Leiden, NL. 11-15 November 2019.

FREZZA G., Metaphorical narratives in dementia discourse: Analysing risks and responsibilities in 3 steps. Workshop of the Inter-University Centre for Metaphor Research CIRM, University of Genova, IT. 15 January 2020.

The final article is underway.

 
 

Research

Study Two - Conceptualizing dementia stigmatisation

What is the role of stigma in the life of people with dementia and their associates? How can we advance research to challenge the stigmatization of dementia?

The stigma surrounding dementia is a significant barrier to better understanding and support. The Alzheimer Europe’s report (Gove et al., 2013) investigated the possible ethical implications of the societal beliefs and portrayals of people with dementia. For example, negative stereotypes about dementia and people living with dementia are spread in society in the form of metaphors, such as people with dementia are ‘zombies’ or ‘vegetables’ (Gove et al., 2013). Such derogative language and way of thinking affect not only people’s opinions but also how people living with dementia may see themselves (Alzheimer’s Disease International, 2019). Research in dementia healthcare found that doctors’ stigmatizing attitudes linked to people with dementia could bias doctors’ views in the diagnosis and in the inclusion of people with dementia and their families in decision making (Brannelly, 2011; Gove et al., 2016). Currently, we lack a unifying framework for understanding the stigma around dementia. Research about the sigma in dementia is heterogeneous and that the lack of a coherent framework for analysis impinges on its advancement. In this study we present the major features of dementia stigma discussed by the literature in the light of a unifying framework of dementia stigma, which is useful to integrate and advance research. Furthermore, we highlight the main suggestions offered by the literature to improve future intervention in this area.

The papers reporting on this topic were selected in the Conference of Science Communication in the Netherlands and the International Conference on Communication in Healthcare:

FREZZA G., The role of stigma and metaphorical narratives in developing responsible dementia communication. Etmaal van de Communicatiewetenschap, Amsterdam. 5-6 February 2020.

FREZZA G., Between decline and plasticity: stigma narratives in dementia health communication. 18th International Conference on Communication in Healthcare, 2020 part II. 15-16 April 2021.

The last revised version of the paper is underway.

 
 

Research

Study Three - Negative emotions in dementia

What makes people with dementia feel worried, fearful, and marginalized? And what can turn these negative emotions into positive ones, like feeling part of society, supported, and empowered?

The emotional life of people living with dementia has been traditionally discussed by the literature in terms of deficits of the disease, including affective symptoms, like apathy and depression (Finkel, 1996). However, personal, environmental, and social factors affect the wellbeing of people living with dementia. Research showed that acknowledging and challenging negative emotions can help make sense of the illness, especially with the help of supportive environments (e.g., Lishman et al., 2014). We lack a clear view of the negative emotions that people living with dementia may experience in their daily lives. Behind these negative emotions may lie people with dementia’s unmet needs (Algase et al., 1996) that are difficult to bring to light and address in everyday contexts and in health care. We collected data from the ‘Dementia Diaries’ website. Through multiple methods we analysed the distinct reasons behind the negative emotions of people with dementia and highlighted how they can be challenged and possibly accepted.

The outcome of this study was published in the following article:

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.

The other findings related to this part of RESEARCH were also presented at the following conferences:

FREZZA G., Resisting isolation: Research with persons with dementia in times of Covid-19. 2021 MCAA Annual Conference - Research in times of crisis, 5-7 March 2021.

FREZZA G., Living with dementia: Metaphor and emotional expression in people with dementia’s own reports. 19th International Conference on Communication in Healthcare, 17-19 October 2021.

With a group of researchers of the Metaphor Lab, the PI investigated in a cross-national survey research the audience’s perceptions of metaphors about Covid-19 in Germany, Italy and the Netherlands.

The findings of the survey were reported in a scientific open access article:

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.

This collaboration with colleagues from linguistics and metaphor studies in which we tested the role of different metaphorical frames to talk about Covid-19 has been very fruitful for MeNDD project. The study on people with dementia’s negative emotions highlighted the use of metaphor as a tool to express negative emotions – also negative emotions about the external circumstances of the Covid-19 pandemic.

The investigation into how the audience perceived metaphors about the Covid-19 pandemic has been highly informative for this research.

 
 

Quoted Texts

Algase, D. L., Beck, C., Kolanowski, A., Whall, A., Berent, S., Richards, K., & Beattie, E. (1996). Need-driven dementia-compromised behavior: An alternative view of disruptive behavior. American Journal of Alzheimer’s Disease, 11(6), 10–19.

Alzheimer’s Disease International (2019). World Alzheimer Report 2019. Attitudes to dementia. London: Alzheimer’s Disease International.

Brannelly, T. (2011). Sustaining citizenship: People with dementia and the phenomenon of social death. Nursing Ethics, 18(5), 662–671.

Buggins, S.-L., Clarke, C., & Wolverson, E. (2020). Resilience in older people living with dementia – A narrative analysis. Dementia, 20(4), 1234–1249.

Castaño, E. (2019). Discourse analysis as a tool for uncovering the lived experience of dementia: Metaphor framing and well-being in early-onset dementia narratives. Discourse & Communication, 14(2), 115–132.

Finkel, S. I., Costa e Silva, J., Cohen, G., Miller, S., & Sartorius, N. (1997). Behavioral and psychological signs and symptoms of dementia: a consensus statement on current knowledge and implications for research and treatment. International Psychogeriatrics, 8(S3), 497–500.

Frezza, G. (2018). Decline vs. Plasticity: Conflicting Narratives in the Dementia Tsunami, 10.12862/FS10FRG. In: Ceccarelli D., Frezza G. (eds), Predictability and the Unpredictable: Life, Evolution, and Behaviour. CNR Edizioni, Roma, 2018, ISBN 97888 80803140.

Gove, D., Wallace, D., Gerritsen, D.L., Gombault, B., Gzil, F., Kasparova J., et al. (2013). The ethical issues linked to the perceptions and portrayal of dementia and people with dementia. Alzheimer Europe’s 2013 Work Plan.

Gove, D., Downs M., Vernooij-Dassen, M., & Small, N. (2016). Stigma and GPS’ perceptions of dementia. Aging Ment Health, 20:391-400.

Johannessen, A., Möller, A., Haugen, P. K., & Biong, S. (2014). A shifting sense of being: A secondary analysis and comparison of two qualitative studies on young-onset dementia. International Journal of Qualitative Studies on Health and Well-Being, 9(1), 24756.

Lishman, E., Cheston, R., & Smithson, J. (2014). The paradox of dementia: Changes in assimilation after receiving a diagnosis of dementia. Dementia, 15(2), 181–203.