by Wendy Mawson (Dementia Key Worker)
Sufferer, victim, demented, senile, patient – these are terms that have been used to describe and define someone living with dementia, it is important to highlight these terms are commonly used by people around the person and not the person themselves. This could include family, friends, professionals, the wider community, media etc… would a person living with dementia want to be defined this way? Does it matter what language others use?
Dementia is a degenerative neurological condition meaning the brain deteriorates over time causing cognitive decline. Symptoms include memory loss, confusion, disorientation, reduced problem solving ability, reduced initiation, perceptual difficulties etc… Dementia is typically diagnosed around age 80 but can affect people much younger and older. Someone receiving a diagnosis at age 80 has most likely lived an interesting, varied and competent life prior to a diagnosis. Once a diagnosis is determined is this person now suffering? A victim? A patient? Not exactly, they are a person living with dementia.
The language that we use is very important as it determines how people living with dementia are viewed and treated in the wider community. The words we use can impact on a person’s mood, self-esteem, confidence and wellbeing. Casual misuse of words can have negative connotations for an individual and adds to wider discrimination and stigma. The day to day language we use can reinforce negative stereotypes or myths about dementia. Terms such as wanderer or aggressive are unhelpful and label the person rather than looking more deeply into the reasons for their behaviour. Someone who is wandering may be walking with purpose looking for something they have lost, or someone who displays aggression may be frightened, frustrated or not understanding what is going on and thus reacting. Understanding more about dementia as a condition is extremely important.
Everyone has the right to be treated with dignity and respect. People living with dementia may have their own preferred words and phrases, do not be afraid to ask people how they would like to define their own experiences or condition. What words would they like to use that are helpful to them? Language that focuses on abilities rather than deficits is empowering and helps the individual retain feelings of self-worth and connection to the wider community.
People living with dementia are still individuals, a dementia diagnosis should not become the defining aspect of their life. The terms Sufferer, victim, demented, senile, patient place the condition before the person. Emphasis needs to be on the person without judgement or assumption because they have dementia.