A recent paper highlights the need to adapt the definition of advance care planning (ACP) to be inclusive of those with dementia and to emphasise the vital role of families in the process. It also advocates for a broader approach encompassing preferences for social aspects of care. The paper, entitled “The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia” and authored by researchers from Vrije Universiteit Brussel (VUB) and the DISTINCT project and co-authored by Alzheimer Europe Director for Public Involvement and Ethics Dianne Gove and Public Involvement Lead Ana Diaz, was published in the journal Palliative Medicine on 31 January 2024.
ACP is a process enabling individuals with decisional capacity to define goals and preferences for future medical treatment and care, discuss these with family and healthcare providers, and record and review them if appropriate. There are concerns that this definition may not apply to ACP in the context of dementia. This study aimed to gather the perspectives of the European Working Group of People with Dementia (EWGPWD) regarding the ACP definition. Three online focus groups and additional individual interviews were conducted.
The EWGPWD members expressed support for several aspects of the current ACP definition which they considered essential, such as that ACP should be a process and be regularly reviewed, that it should encourage communication and documentation of decisions about future care, and should not be limited to the completion of advance directives. However, the EWGPWD disliked that the current ACP definition explicitly targets ‘individuals with decisional capacity’, thereby excluding people with dementia who have less or lack capacity.
Rather than advocating for a separate definition, the EWGPWD proposed adapting the existing definition to be more inclusive of those with dementia. They emphasised the importance of a relational approach to ACP, stressing the significant role of families and trusted relationships in decision-making processes. Moreover, they highlighted the need for the ACP definition to encompass broader aspects of care beyond medical treatment, including social care and meaningful activities. Recommendations for future adaptations to the definition were provided based on these findings. The researchers from Vrije Universiteit Brussel (VUB) and the DISTINCT project who led this paper would like to thank the EWGPWD and their supporters for their valuable contributions. The paper, which will soon be available in open access, can be found here:
