End-of-life care

From diagnosis, offer people living with dementia flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. For people living with dementia who are approaching the end of life, use an anticipatory healthcare planning process. Involve the person and their family members or carers (as appropriate) as far as possible, and use the principles of best-interest decision-making if the person does not have capacity to make decisions about their care. (In Scotland the Adults with Incapacity (Scotland) Act 2000)

Review the person’s needs and wishes (including any care and support plans and advance care and support plans) after every transition.

Healthcare professionals should be aware that existing measures to define end of life in people with dementia based on cognition and ambulatory function may be ineffective and may not recognise the unmet needs at end of life.

Healthcare professionals should focus on the needs of the individual and consider moving away from a focus on defining end of life by disease stage.

Family and carers of people with dementia should receive education, so that they understand how dementia can be the cause of death.

Healthcare professionals and those involved in the care of people with dementia should be aware that palliative care is ongoing from diagnosis to end of life.

People living with dementia, and their family and carers, should be provided with information about the progressive course of the condition, that dementia can be a cause of death and that a palliative approach to care is appropriate at all stages.