Advance care planning discussions are very personal and individual. They often take place with the support of others such as a general practitioner (GP) or other health or social care professional, family members or the person’s family carer.

In England, if people choose to make an advance care plan they can write their wishes down in:

• an advance statement, which can cover anything to do with future care such as the values that they want to guide their care, their thoughts on different treatment options or where they would like to be cared for. It can include all types of wishes, not just those about medical care.
• an advance decision, sometimes called an advance decision to refuse treatment (ADRT). This is a decision to refuse a specific type of medical treatment in the future if the person loses the ability to make his or her own decisions. It is usually legally binding.

If they wish to, a person can choose somebody else to make decisions on their behalf if they are unable to make them in the future. This is called a Lasting Power of Attorney (LPA) for health and welfare. Other countries have similar arrangements for people wanting to develop an advance care plan although the documents and processes involved may be called different things.

It is best if advance care planning is carried out with people with dementia before they lose the capacity to make their own decisions and express their wishes. However where this is not possible, an advance care plan is sometimes developed with a family carer to help make sure that care is given in the way that is in the best interests of the person with dementia and in a way that the carer believes the person with dementia would wish.

There is further information on advance care planning in the booklet: ‘Planning for your future’ published by the National Council for Palliative Care.

As their illness progresses, people with dementia are likely to find it increasingly difficult to communicate. Planning ahead allows them to share their views on future care and what is important. It can be reassuring for family carers to know that care is being given in the way that the person would want.

Advance care planning can also help to reduce avoidable emergency hospital admissions and care that will not benefit a person at the end of their life. A supportive care approach (we call this palliative) to relieve discomfort and distress is usually appropriate for people with dementia in the late stages of their life. However, this type of approach is not always taken. Instead, people with advanced dementia often experience emergency hospital admissions and distressing medical treatments despite the likelihood that this will not improve or maintain their quality of life. Advance care planning can help people to die in the place they choose, which for most people is their own home or care home.

It is difficult to assess how well advance care planning works because there is no single way of doing it and the experience of advance care planning varies from person to person, including how and when it takes place and which professionals are involved. There are also many different possible benefits that can come from having these discussions, some of which are hard to measure. As well as fewer hospital admissions, benefits can also include helping people to understand their health condition better and improved communication with health and social care professionals. A recent review of research on advance care planning (for people with a range of different health conditions, not just dementia), found that it can improve the quality of end of life care particularly when there has been a discussion supported by a health or social care professional rather than just completing documents. ⁽¹⁾

A number of studies have specifically looked at advance care planning for people with dementia and also identified positive benefits. For example, a large study in the United States found that people with severe dementia, living at home, who had an advance decision to limit treatment in certain circumstances, (called a treatment-limiting advance directive) were significantly less likely to die in hospital than those without an advance decision. Two other studies, one in Australia and one in Canada, found that people in nursing homes using the ‘Let Me Decide’ advance care planning programme spent less time in hospital and had fewer emergency admissions.

Giving people with dementia food and fluids artificially (this is called ‘tube’ feeding ‘) in their last weeks of life is not usually thought to be a good idea. It can be very distressing for people with dementia and their families and often requires hospital admission. It has also been shown that there are no clear benefits to ‘tube’ feeding in terms of the length or quality of life of the person or in improving their nutrition ⁽²⁾ A number of studies have found that people with dementia in nursing homes ^(3,4,5,6) and in hospital ⁽²⁾ who have an advance care plan are less likely to be ‘tube-fed’ towards the end of their life.

Another study in the United States found that family carers were more satisfied with the end of life care given to their relative when staff at the nursing home spent time discussing their relative’s advance care planning with them^{. (7,8)}