Wednesday 10 April 2024

Epistemic Injustice in Dementia

One of the most common mistakes people make when they hear the word “dementia” is to assume that it is the same for everyone. They assume that problems with memory are always the most prevalent symptom, that dementia is synonymous with “Alzheimer’s disease” or that it is not possible to live a good life with such an illness. 

All of these are contested; the first two by various informative webpages (e.g., Alzheimer’s Association), and the third by people with dementia themselves in the multitude of first-hand accounts I have uncovered during my research in which they readily voice their experiences of “living well” in spite of their symptoms (e.g., Mitchell, 2018, Bute, 2018).

Arguably the most harmful assumption about people with dementia is that “the impairment of cognitive function is severe and global; that the person has or will rapidly and inevitably become a ‘vegetable’.” (Crichton, Carel & Kidd, 2017:69). Although the progression of impairment is, to some extent, inevitable (given that there is no cure), cognitive decline does not occur in the same way or at the same pace for everyone. 

Furthermore, it is important, I feel, to note the effects of the language used. People with dementia have been referred to as “vegetables”, “shells”, and even “zombies” (Behuniak, 2011, Schweda and Jongsma, 2022). This kind of downgrading of their identity from a person to a “zombie” only perpetuates the stigma that a person with dementia is “crackers” (Langdon,et al 2007:994) and therefore not worth listening or speaking to.

An icon of two adults listening and talking to each other

The notion that a person with dementia is not worth conversing with is aptly referred to by Young et al (2019) as “pre-emptive testimonial injustice”. Testimonial injustice (TI) is a type of epistemic injustice in which a speaker is not given the credibility they deserve by a hearer, and so they are “wronged specifically in their capacity as a knower” (Fricker, 2007:1). Pre-emptive TI involves the hearer already assuming that the speaker is an unreliable testifier before they have even spoken. A clear example in which this is exemplified can be seen in a study by Larsson et al in which people with dementia were interviewed: 

“if you tell colleagues (about having dementia) then they change….they will put a mark (on) your forehead… dementia that’s no point… no point in telling him… that’s too complicated… he will never get it… or a joke or something funny… there’s no point… he won’t get it anyway… and… it’s not true… because you will” (Larsson et al, 2018:4). 

“Bob” (in a similar study) also expresses that his live-in carer frequently warns people that:

it’s no good discussing it with him (Bob) because he wouldn’t know the first thing about it” (Langdon et al, 2007:996). 

In both of these examples, the person with dementia is clearly a victim of pre-emptive TI. It has unjustifiably been assumed that the person with dementia “won’t get it” and that they are therefore not worth engaging in communication with.

The stereotype above discussed by Crichton, Carel & Kidd is arguably doing a lot of the heavy-lifting in pre-emptive TI. Not everyone with dementia has “severe and global” cognitive impairment or is incapable of understanding. This is yet another instance of the harm that negative stereotypes can cause in testimonial exchanges and to epistemic agents (Fricker, 2007). 

In the words of the late Wendy Mitchell: “Dementia has to start somewhere…It doesn’t always mean the end stages, and I’m just an example of someone at the start of the journey” (Mitchell, 2018:179). We should bear Mitchell’s words in mind before we hesitate to speak to or listen to someone because they have dementia.

Sarah Wood

Sarah Wood is a PhD researcher in Philosophy at the University of York. Her research aims to provide a better understanding of the subjective experience of dementia by drawing upon ideas in the phenomenological tradition.