stage: 6

An advance care plan for dementia — why it matters and why most families leave it too late

An advance care plan is a written record of a person's wishes, values, and preferences for their future care, made while they still have the capacity to express them. For someone with dementia it is most useful when put in place early, before capacity deteriorates significantly. It can cover preferences about where the person would like to be cared for and to die, which medical treatments they would or would not want, how they want to be treated during personal care, who should be involved in decisions, and what matters most to them about their daily life. An advance care plan is not legally binding in the same way as an advance decision to refuse treatment, but it is a powerful guide for families and professionals making decisions on someone's behalf. Completing one with the person, a GP, and a specialist nurse gives it the most weight.