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DISTINCT (European Commission H2020)

Advance care planning (ACP) for people with dementia and their family

Period

12-2019 to 11-2022

Abstract project

Background

Advance care planning (ACP) is a process of communication between patients, family caregivers and professionals about preferences for future care, including end-of-life care. Given the progressive cognitive decline nature of dementia, ACP is particularly relevant for persons with dementia (PWD) and their caregivers. However, the uptake of ACP in dementia is low.

Aim

Develop and test an easy accessible, user-friendly and person-centered interactive ACP website with information about the disease, reflective questions, links to advance directives and case based videos, for PWD and their family.

Methods

Input from PWD themselves will ensure the website is user-friendly, accessible and person-centered. In a second phase, a randomized feasibility trial will be conducted to investigate: a) effectiveness of the use of the website compared to face-to-face conversations with clinicians and b) feasibility for a future definitive RCT following the CONSORT guidelines for pilot/feasibility trials.

Funding

This project has received funding from the Marie Sklodowska-Curie Innovative Training Networks (MSC-ITN) under the European Commission's Horizon 2020 program.

Project group

PhD student: Ms. Fanny Monnet
PhD supervisor: Prof. dr. Lieve Van den Block
Co-supervisor: Dr. Lara Pivodic

Partners

DISTINCT - Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology