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Section 2
INTRODUCTION
“The lack of public understanding of dementia and the lack of willingness to discuss death and dying in society combine to create a double stigma around dementia and death. This means that it is rarely thought about and conversations that could achieve positive outcomes for personal choice at the end of life do not take place” (13). Creating early and repeated opportunities for discussions on future and end-of-life care with a person with dementia is recognised as best practice and should be considered as part of routine care planning (5,15–22). This allows the person’s will and preferences to be recorded and honoured throughout their condition in order to enable them to live well up to the time of their death (23,24). Furthermore, it supports the person to make informed decisions about their future care and helps to avoid potentially burdensome interventions as their condition progresses (23–29). Dementia palliative care reflects the qualities of person-centred dementia care and the holistic focus of palliative care. Both models share a person centred philosophy and a set of underlying principles that focus on quality of life, whole person care, a respect for autonomy and care of the person and their family (8). Person centred care seeks to support and maintain personhood through relationships and recognises the need for attachment, comfort, identity, occupation and inclusion (30). This document is underpinned by these core values. Having discussions about future and end-of-life care is a challenge which requires all staff supporting a person with dementia to be able to acknowledge and respond appropriately when that person gives a cue, asks a question, or talks about their wishes in relation to their end-of-life care (31). Research indicates that while healthcare staff recognise the need to have discussions on future and end-of-life care with people with dementia, they may feel unprepared and lack confidence in doing so. This may be due to a lack of training, a fear of upsetting the person, time constraints, lack of role clarity and death anxiety (1). These anxieties can be particularly heightened when speaking about these issues with a person who has dementia (15,32–36). The aim of this guidance document is to inform and guide healthcare staff in initiating and facilitating discussions relating to future and end-of-life care with people who have dementia.
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Facilitating discussions on future and end-of-life care with a person with dementia
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