Getting it right: end of life care and dementia - Philip Warford

End of life in dementia is recognised as being complex. One in three people will die with the condition, yet it can be difficult for practitioners to recognise nearness to death for an older person with dementia because older people often experience a gradual long-term decline and communication difficulties.

As a result there is commonly under-treatment of symptoms such as pain, and the use of more aggressive interventions such as artificial feeding. Too many people die a painful, undignified death in hospital when their wishes would have been to be supported to die at home.

There are local transformation programmes across Sussex to improve the end of life care pathway and to improve the dementia care pathway. NHS Sussex successfully secured Regional Innovation Funding (RIF) for one year to implement a change in the model of care at the junction of these two pathways.

The overall aim of the project is to improve end of life care for people with dementia across Sussex, so that more people with dementia die in their preferred place of death, with dignity, without undue pain and with their advance wishes respected.

The specific project objectives are:
• To increase advanced end of life care planning for people with dementia
• To develop a comprehensive care pathway for people with dementia at the end of life
• To ensure staff caring for those with dementia and nearing the end of their life are equipped with the skills to deliver safe, high quality care