Abstract
Background: Advance care planning (ACP) is particularly appropriate for persons with dementia (PWD) since it fosters conversation about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behaviour, emphasises prospective and relational autonomy, and may be generally consistent to elderly’s decision-making needs. However, despite the evidence of its benefits, ACP is yet to become widely used among PWD. In this paper, we present results regarding the feasibility and acceptability of a pilot intervention designed to foster ACP among PWD and their relative and explore future outcome measures in prevision of a randomized controlled trial. Methods: In order to assess pre-post variations, we used qualitative interviews and four psychometric scales: Hospital Anxiety and Depression Scale, Questionnaire of Psychological Autonomy, Decisional conflict scale, and Zarit burden scale. We added two visual analog scales for perceived control over and perceived involvement in healthcare decisions, as well as two hypothetic scenarios to test concordance between PWD’s and surrogate’s decisions.Results: Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to meet clinical routines, 4) to engage PWD and their relatives in ACP, and 5) to choose outcome criteria that do not burden PWD. Alongside with those expected challenges, we discuss substantial unanticipated gatekeeping by the research ethics committee and healthcare professionals. Despite the setbacks, the intervention was well received by PWD and their relatives that expressed satisfaction with the procedure, especially in regard to the opportunity to discuss a sensitive topic with the help of a facilitator. Relatives’ perceived control over healthcare decisions increased, as well as concordance between PWD’s preferences and relatives’ decision. Conclusion: Misconceptions about dementia and ACP, both in the patient, relatives, and healthcare providers, combined with structural institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we advocate for a systemic approach of ACP and for the use of ACP tools and research adapted to PWD cognitive capacities.Trial registration: This trial was registered in the database clinicaltrial.gov with the number NCT03615027
Perspectives of Persons With Dementia, Family, and Healthcare Providers on an Advance Care Planning Decision Aid
