End-of-life care policy in the UK states that all people should identify their needs, priorities and preferences for end-of-life care in the form of advance care planning. Advance care planning in dementia is less well developed than in some other disease groups such as cancer and, arguably, may be more complex. A person with dementia may lose the capacity to make decisions associated with advance care planning early in the course of the disease, requiring more involvement of family carers. This study explores the 'lived' context to health care decision-making of dyads (the person with dementia and their carer) in respect of past, present and future healthcare decision-making.
Keywords: Advance care planning; Carers; Decision-making; Dementia; End of life.