Stigma

Conceptualizing dementia stigmatization

What does living with dementia mean for individuals and society? Can we clarify the stigma of dementia based on a deep understanding of people with dementia’s lived experience?

Background

Stigma of dementia is an essential part of the ethical issues in dementia and dementia health care. The Alzheimer Europe’s report (2013) investigated the possible ethical implications of the societal perceptions and portrayals of people living 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 (World Alzheimer Report 2019). Research in dementia healthcare found that doctors’ stigmatizing attitudes linked to people with dementia could bias doctors’ views in the process of diagnosis and in the inclusion of people with dementia and their families in decision making (Gove et al., 2016; Brannelly, 2011). Currently, we lack a philosophical conceptualization that bring together the phenomena related to stigma in dementia into an integrated view.

Objective

Outlining a philosophical framework of dementia stigmatization based on a broad understanding of what it means living with dementia.

Methodology

Review of the literature on dementia stigma. Conceptual analysis.

Synthesis

We analysed the main stigmatizing aspects of dementia stigmatization discussed by the literature in the light of the phenomenon of living with dementia. We highlighted the related ethical gaps and the proposed measures to address them.

Emotions

Negative emotions in dementia

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

Background

The emotional life of people living with dementia has been traditionally discussed by the literature in terms of deficits, including affective symptoms, like apathy and depression (Finkel, 1996). However, rather than focusing only on the expression of symptoms, different circumstances, both personal, environmental and social, can cause the emotional distress 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.

Objective

Clarifying the various reasons behind the negative emotions of people with dementia and highlighting how they can be challenged and overcome.

Methodology

We collected data from the ‘Dementia Diaries’ website. We conducted a Grounded Theory Method analysis (GTM; e.g., Glaser & Strauss 1967/1999; Bryant & Charmaz, 2019) to investigate the role of negative emotions in the lives of people with dementia.

Synthesis

People with dementia’s negative emotions are triggered by many circumstances beyond the symptoms of dementia. For example, lack of social acknowledgement and everyday barriers (in transportation and technology) can make feel people with dementia worried, fearful and marginalised. However, when people with dementia feel supported and valued, they can balance the negative and positive aspects of living with dementia. As a result, they can develop coping strategies and improve their well-being. Our study sheds light into people with dementia’s potential to grow and flourish despite adverse personal and environmental conditions.

Practical Aplication

Social activities designed with and for people with dementia and dementia-friendly environments seem ideal tools to empower people with dementia and improve their wellbeing.

Metaphors

Metaphors and emotion-focused coping strategies (undergoing)

How do metaphors help to express the complex emotions that arise in the process of adaptation to dementia? Are some metaphors more appropriate than others at different stages of the process?

Background

Adaptation to dementia has been described as a dynamic and dialectical process of dealing with the changes and the emotional drawbacks brought by dementia (Buggins et al., 2021) – for example, loss vs growth, passivity vs proactivity and fear vs pleasure. When dealing with the distress caused by their illness, people with dementia can find it especially difficult to express their emotions. Dementia research has shown that different metaphors can help people with dementia to verbally express their needs and the complex emotions arising in the process of adaptation to illness and the consequent development of therapeutic alliance in healthcare (Castano, 2020; Johannessen et al., 2014)

Objective

Clarifying the role of metaphor as a potential tool to verbally express emotions in the different phases of adaptation to dementia.

Methodology

We will conduct a critical metaphor analysis (Charteris-Black, 2004) by identifying (MIPVU; Steen et al., 2010), interpreting and explaining the metaphors that people with dementia use in the different phases of adaptation to dementia.

Practical application

The findings of this study may help to emotionally support people with dementia in their resilience trajectories: finding words for their complex emotions and, consequently, better communicating their needs to informal and professional caregivers.

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.

Bottrell, D. (2009). Understanding “Marginal” Perspectives. Qualitative Social Work, 8(3), 321–339.

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. (2020). 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.

Charteris-Black J. (2004). Corpus Approaches to Critical Metaphor Analysis. NY: Palgrave Macmillan.

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.

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.

Glaser, B. G., & Strauss, A. L. (1968). Time for Dying. Chicago: Aldine.

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.

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.

Steen G.J., Dorst A.G., Herrmann J.B., et al. (2010). A Method for Linguistic Metaphor Identification: From MIP to MIPVU. Amsterdam: Benjamins.