Dementia: what care do patients and carers need in the last year of life and time surrounding death?

This study sought to explore needs of people with dementia and their informal carers in the last year of life and surrounding death. Aims: The main aim of this study was to explore experiences of this group identifying their underlying needs at this time.

Five themes were derived from within the data, carers as experts; kindness; humanity and compassion in care; the hard work of caring; living and dying with dementia in the face of uncertainty and communicating in a world of chaos and unpredictability.

The latter being the underpinning theme in the data. Informal carers want to collaborate and be included in all aspects of palliative and end of life care for their loved ones. Issues separating dementia from other life limiting illnesses and provision of palliative and end of life care are: disease course, uncertainty and unpredictability over long periods of time and the role of informal carers as experts with a group whose communication skills are compromised.