An interactive website for advance care planning (ACP) for people with dementia and their family
|Vrije Universiteit Brussel
Early Stage Researcher (ESR3)
Prof. dr. Lieve Van den Block
Dr. Lara Pivodic
Hi, my name is Fanny Monnet. I graduated from Maastricht University with a BSc. in European Public Health in 2018 and a MSc. in Health Education and Promotion in 2019.
Throughout my studies, I had the opportunity to discover my passion for public health, and particularly for the issues of mental illnesses. Furthermore, during my studies, I also had the chance to work several months as a nursing assistant intern in a psychogeriatric unit in a psychiatric hospital in Switzerland. These different experiences have shaped my research interests and have steered me in the direction of a PhD within dementia care.
Therefore, I am delighted to be joining DISTINCT and working on developing an online advance care planning tool for people with dementia and their families, and contributing to research aiming to improve the wellbeing of people living with dementia.
ACP in dementia is often not done or started too late and our recent review resulted in the development of an evidence-based guideline on ACP in dementia major gap in current practice is the lack of good tools that people with dementia and their caregivers can use to start thinking about ACP. With family carers and people with dementia in various stages of their illnesses this ESR will develop and evaluate an interactive ACP website, and perform a feasibility trial to compare the website with face-to-face ACP conversations with clinicians.
The website will include information about the disease, reflective questions for people to consider, links to advance directives, case-based videos, etc. The input from PWD themselves will ensure the website is user-friendly, accessible and person-centered. We will evaluate experiences of PWD and their family with using the website for feelings of mastery, security, mood, hope. In a second phase the ESR will start a randomized feasibility trial 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.
Two for 3 months each. The first in year one with Mindtech UoN to learn about website design and the second in year 3 with VUMC MU to study pilot/feasibility trials.
- Monnet, F., Pivodic, L., Dupont, C., & Van den Block, L. (2022, 17-19 October). Main findings of the DISTINCT projects on technology to promote social health [Symposium presentation]. 32nd Alzheimer Europe Conference. Bucharest, Romania.
- Monnet, F., Pivodic, L., Dupont, C., Dröes, R.M., Diaz, A., Gove, D., & Van den Block, L. (2021, 29 November-1 December). Information provided to people with dementia and their carers on advance care planning: a content analysis of dementia associations’ websites in Europe [Quick oral presentation]. 31st Alzheimer Europe Conference. Virtual, Utrecht, The Netherlands