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Communication Vignettes: Talking About Death in Dementia
  1. Helen Scott
  1. Helen Scott is a palliative care nurse and Editor, End of Life Journal. Email: journal@stchristophers.org.uk

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Introduction

In this issue of the journal, Julie Watson highlights how people with dementia often become depersonalised. As dementia progresses, carers may stop seeing the human being behind the condition, attributing all behaviour to pathology. However, despite behavioural change and loss of cognitive function, people who have dementia retain their sense of uniqueness and individuality (Sabat, 2001, 2010). Although dementia may strip away memories and coherent verbal communication, it does not take away feelings, such as shame, embarrassment, pride, happiness, empathy, fear, anxiety, or the sense of being burdensome (Sabat, 2001).

It is common for people with dementia to be treated in a child-like and patronising manner or as if they are already dead with only a failing body remaining. However, although people with dementia forget many things, they never forget that they are adults. They expect and deserve to be treated as such. People with dementia have the same human needs and rights as anyone else. They must be treated with respect and dignity and be enabled to take their part in social groups (Sabat, 2001). When people with dementia perceive they are being treated disrespectfully or are infantalised, they feel a sense of threat, often becoming angry or aggressive and resistant to care (Chalmers, 2000; Jablonski et al, 2011a,b).

With regard to end-of-life care, people who have dementia retain knowledge of the concept of death and know that they are going to die. During the end stages of life, psychological distress about death is just as common among people with dementia as it is among people without dementia (Meeussen et al, 2012). Talking openly about death and dying, despite verbal communication difficulties, can reduce the anxiety of people with dementia and thereby improve their quality of life as death approaches (The National Council …

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