End of life
End-of-life dementia care is about respecting wishes, relieving suffering and honouring an individual’s life story. With sensitive support, this final chapter can be one of comfort, connection and peace.
End-of-life dementia care is about respecting wishes, relieving suffering and honouring an individual’s life story. With sensitive support, this final chapter can be one of comfort, connection and peace.
Dementia is a life-limiting condition which affects everyone differently and progression will vary greatly for every person. Recognising when a person with dementia may be approaching the end of life can be difficult, but early planning and compassionate care will ensure that their wishes are adhered to and provide, comfort, dignity and peace, both for them and their loved ones.
Advance care planning allows a person with dementia to express their wishes to others, ensuring they are cared for in the way of their choosing. This may include:
• A decision to refuse specific treatments (Advance Decision to Refuse Treatment)
• Advance statements outlining personal values and care preferences
• A decision to grant a Lasting Power of Attorney (LPA) for health and welfare
In the advanced stages, a person with dementia may experience:
• Severe memory loss and confusion
• Loss of speech or ability to recognise loved ones
• Difficulty eating or swallowing
• Limited mobility or becoming bedbound
• Increased sleep or periods of unresponsiveness
One or more of these signs may indicate to the family, carer or medical team that a person with dementia is nearing the final phase of life.
End-of-life care can be provided within a person’s own home, in residential care, in hospital or in a hospice. Palliative care for a person with dementia will focus on their comfort and care preferences and may include:
• Managing any pain, discomfort or distress
• Managing hydration and nutrition needs where possible
• Supporting emotional and spiritual needs
• Creating a calm, familiar environment, both for the person with dementia and their loved ones
Loved ones may struggle with grief, uncertainty and the complexities of the decisions they may need to undertake. A Dementia Coordinator can provide support through this time, providing a clear understanding of the process through to end of life.