Advanced care planning

Johan De Schepper

Referentiepersoon dementie
Staff member
Web site of the case study
Table of contents
  1. Advanced care planning
  1. end of life
Advance Care Planning (ACP) gives people the ability to plan their future care and support, including medical treatment, while they have the capacity to do so.”[1] Making an ACP is certainly relevant for people who are at risk of losing their mental capacities (e.g. due to a progressive disease such as dementia) or for people whose mental capacities vary over time (e.g. with psychological disorders).

The definition of early care planning has evolved in recent years. Where in the beginning the emphasis was placed on the end of life, with particular attention to the written wills, this has evolved into a broader interpretation. Early care planning deals with the entire care process in which the person (or legal representative) expresses his/her wishes, values and expectations, in coordination with informal caregivers and care providers.[2]

Due to the specific nature (cognitive decline) of dementia, it is recommended that early care planning be discussed at an early stage. It is not an obligation for the person concerned and his loved ones, not everyone wants to think about the future.

But by making early care planning a topic for discussion, informal caregivers can adapt to the person and his wishes and it is easier to make decisions in the best interest when the capacities are no longer there. “How would the person with dementia have wanted this?”

Nevertheless, it is important to continue to hear the voice of the person with dementia. Values, wishes and preferences can change over time. “What is the quality of life right now?” Early care planning and the current will of the person with dementia support each other. The actual will of the person can be obtained through interaction with the person himself and/or through observations and consultation with key stakeholders.

Early care planning is a dynamic, personal and inclusive process focused on quality of life.

There are several guidelines and methods for starting and maintaining the process of early care planning.

As good practice, we cite an example from Belgium: “Before I forget”. This is an application and associated method developed for conducting conversations about early care planning with people with dementia. The project offers the user a vision, methodology and tool. It's not just a way to have the conversation. For more information : on YouTube “ Voor ik het vergeet” or the website “Voor ik het vergeet” (Before I Forget)

Do you know of similar tools, methods or guidelines for conducting conversations about early care planning? What do you think are important points of attention?

[1] NICE Advance Care Planning

[2] : Vroegtijdige zorgplanning bij dementie