End of Life and Dementia

Dementia is a life limiting illness

Supporting a person who is at late stage of their dementia and entering end of life (defined at expected to die in the next 12 months Ref: General Medical Council UK 2010 ) can be difficult due to the recognition that the person is at this stage of their illness. It can also feel distressing for families who already have been experiencing many changes through the course of the person's dementia

The gold standards framework identifies through the 'Prognostic Indicator Guidance' (ref.Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al ). This provides guidance about what signs to look for to make the judgement that a person is entering end of life. (see downloads) 

Assessing whether a person is in pain becomes increasingly important at this stage as the person's ability to communicate this may be significantly compromised. The Abbey pain assessment tool and DisDAT  tool are 2 ways to approach this .(see downloads)

  • Abbey Tool for a quick assessment in an acute setting where carers /families are not present
  • DisDAT  Tool in partnership with carers/family that identifies normal and distressed behaviours that may suggest pain.

Gloucestershire has an end of life strategy which chimes with national guidance and is a resource for practitioners; Gloucestershire's End of Life Strategy 

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

Link: www.gloucestershireccg.nhs.uk

Education opportunities for Health and Social Care staff can be found on the following link (see calendar of events) Free training resources are also available and include workbooks and presentations.

Link: https://www.gloucestershireccg.nhs.uk/your-services/commissioning/eolc/eolc-training/

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