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End of Life and Dementia

Dementia is caused by life limiting diseases that damage the brain progressively over time.

It is important to support the person living with dementia to make plans for the future and make their wishes and preferences known. In the earlier stages the person living with dementia may have capacity to make informed decisions about important matters about their care in the later stages of their condition. Making advanced care plans is an important part of this:

End of life care for a person with dementia | Alzheimer's Society (

When supporting a person with dementia who is in the later stages of their condition, assessing whether the person is entering the end of life stage can be difficult. End of life is defined as expected to die in the next 12 months (General Medical Council: GMC UK, 2010). It can be distressing for families and carers who have experienced many changes through the course of the person’s dementia to accept this uncertainty.

A helpful assessment method to help identify when a person living with dementia is nearing End of Life is the Supportive and Palliative Indicator Tool (SPICT):

SPICT – Supportive and Palliative Care Indicators Tool

These can help to make a judgement on whether a person is entering the end of life phase and to help families and carers to prepare themselves.

Assessment and management of physical and psychological pain is increasingly important in the late and end of life stages of dementia as the person’s ability to verbally communicate may be significantly compromised. The Abbey pain scale can help identify and assess levels of pain. Where possible assessment should consider the views of family and carers who know the person well and who may be able to identify changes in the person that may indicate pain if the person cannot verbally communicate this.

The Abbey pain scale is for quick assessment in acute care settings where families are not present: Microsoft Word - H387 Abbey Tool.doc (

Gloucestershire has an end of life strategy which reflects the national guidance and is a resource for practitioners. Better care for people nearing the end of life : NHS Gloucestershire CCG

The end of life care team within Gloucestershire CCG (Clinical Commissioning Group) can provide useful resources and information: NHS Gloucestershire CCG

(Gloucestershire County Council: reviewed and amended by Sam Harris RMN DET 22/7/22)

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