Dichotomising dementia: is there another way?

Abstract

This article discusses the reduction of the complex experience of dementia to a dichotomised 'tragedy' or 'living well' discourse in contemporary Western society. We explore both discourses, placing them in the context of a successful ageing paradigm, highlighting the complex nature of dementia and the risks associated with the emergence of these arguably competing discourses. Specifically, we explore this dichotomy in the context of societal understandings and responses to dementia. We argue for an acceptance of the fluid nature of the dementia experience, and the importance of an understanding that recognises the multiple realities of dementia necessary for social inclusion to occur. Such an acceptance requires that, rather than defend one position over another, the current discourse on dementia is challenged and problematised so that a more nuanced understanding of dementia may emerge; one that fully accepts the paradoxical nature of this complex condition.

“Even Though I Have Dementia, I Prefer That They Are Personable”: A Qualitative Focused Ethnography Study in a Danish General Hospital Setting

“…Patients are regarded as participating only insofar as they follow instructions without resistance: Otherwise, they are regarded as only having the dementia diagnosis, unable to cooperate. This challenged the patients with dementia during hospitalization, as they were trapped in "the discourse of tragedy or living well" as described by McParland et al (2017). These authors also advocate for a new discourse that accepts the incongruity of the complex condition of dementia arguing that this new discourse should include both taking into account the difficulties inherent to cognitive impairment in care and treatment and at the same time respecting the human being beyond the dementia diagnosis (McParland et al, 2017).…”

“…This challenged the patients with dementia during hospitalization, as they were trapped in "the discourse of tragedy or living well" as described by McParland et al (2017). These authors also advocate for a new discourse that accepts the incongruity of the complex condition of dementia arguing that this new discourse should include both taking into account the difficulties inherent to cognitive impairment in care and treatment and at the same time respecting the human being beyond the dementia diagnosis (McParland et al, 2017). This is further acknowledged as a turn toward a positive dementia discourse by de Vugt and Dröes (2017), who argue that the discourse of dementia must focus on living well with dementia including respect for the losses and difficulties that challenge these people, thereby avoiding depersonalization and threats to dignity.…”

‘Well I’m still the Diva!’ Enabling people with dementia to express their identity through graffiti arts: Innovative practice

“…Consequently, people living with dementia can lose their sense of individual identity and self-worth (Sabat, 2014). Furthermore, public misconceptions and fear of dementia can result in the stigmatisation and discrimination of those living with the condition (Alzheimer’s Disease International, 2012; McParland, Kelly, & Innes, 2017), as well as their marginalisation within their communities (Alzheimer’s Society, 2013).…”

Stakeholder perspectives of the dementia-friendly hospital: A qualitative descriptive focus group study

“…As a constitutive element in the description of the dementia-friendly hospital, our findings point to a need for a discussion of the current dichotomized dementia discourse between tragedy and living well as described by McParland et al (2017). According to the stakeholders’ descriptions in our study, dementia friendliness in hospitals primarily concentrates around how to support patients with dementias’ ability to remain a person during hospitalization rather than focusing on the limiting consequences caused by the dementia diagnosis.…”