- People with dementia are at risk of receiving poor end-of-life care.
- Although many palliative care services now care for people with conditions other than cancer, people with dementia are infrequently referred to, or cared for by, palliative care services.
- People with dementia should have opportunities to make informed decisions about their future care at an early stage of their condition and have their palliative care needs addressed.
- Engaging with the palliative care team while the person with dementia still retains capacity is also helpful for the carers. Carers of people with dementia often report not knowing what the person wanted at the end of life, having not been able or prompted to talk about this sooner. This can lead to a considerable amount of distress or guilt on the part of the carer as they feel that the person with dementia did not receive the death they would have wanted.
End of life care in dementia can raise the following issues:
- Feeding Issues often arise in advanced dementia. The following general principles should be followed:
- People with dementia should be encouraged to eat
and drink by mouth for as long as possible.
- Specialist assessment and advice concerning swallowing and
feeding in dementia should be considered.
- Nutritional support, including artificial (tube) feeding, should be
considered if dysphagia is thought to be a transient
phenomenon, but artificial feeding should not generally
be used in people with severe dementia for whom
dysphagia or disinclination to eat is a manifestation of
- Regarding 'Do Not Resuscitate' orders, policies in hospitals and long-stay residential, nursing or continuing care units should reflect the fact that cardiopulmonary resuscitation is unlikely to succeed in cases of cardiopulmonary arrest in people with severe dementia.
The Irish Hospice Foundation has a range of publications covering end of life issues and dementia on their website.