Advance directives emerged in the s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care.
Advance care planning ACP has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional s in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently.
In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation.
Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Current WHO estimates indicate that by one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years.
In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia.
