Staff should know when to refer to a more senior staff member if the conversation extends beyond the scope of their role or knowledge (21,22). Formal discussions on a person’s future care are the responsibility of senior staff who have the expertise to answer the clinical questions which commonly arise in discussing end-of-life care for people with dementia. Hosting formal family meetings are discussed later in this section. Finally, people with dementia may have a moment of clarity which are fleeting or ‘special moments’. During these moments the person with dementia may spontaneously express their wishes, including their wishes and preferences relating to the end of their life. Information from an Irish study entitled ‘Planning for the Future’(16) illustrated how people at an advanced stage of their dementia could express their wishes with clarity. The project illustrated how people with dementia often brought up issues regarding pain, their wish to stay in the centre and their readiness for death in these ‘special moments’. This guidance document recommends that these spontaneous interactions from residents with dementia should be captured and documented as they happen. The figure below has been taken from this project and illustrates some of the key aspects of end-of-life care discussions.
It’s really important to us that you are happy here. We want to get to know you and want you to feel comfortable talking to us about your wishes or any worries you might have...
Ask me what I want or what I would not want.
Have you ever thought about what you might want if you became very unwell?
Do you have any worries or wishes about your future care?
We always want to know that we’re doing what you want in relation to your care... We want you to be able to tell us what matters to you.
Is there anything that you’d like to tell us about looking after your future?
Facilitating discussions on future and end-of-life care with a person with dementia
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