On 2 and 3 September, the DEM-CAPs (DEMentia CAre and Psychosocial Support interventions estimating health-economic impact to support access and implementation in practice) partners met face-to-face for the first consortium meeting in Stockholm, Sweden. DEM-CAPS aims to develop and validate a health-economic modelling framework that demonstrates the value of psychosocial support interventions for people living with dementia and their carers. There is evidence for the effectiveness of some of such interventions for improving quality of life of people with dementia and their supporters (for example Cognitive Stimulation Therapy, reminiscence therapy, music therapy), however there is widespread problems in providing and accessing them, which is partly driven by incomplete knowledge of the resource use implications and cost-effectiveness evidence.
During the meeting, all work package leaders presented an overview of their work plan, described progress to date and discussed future challenges. Work package one, which is being led by Lukas Duffner (AE) and Faye Forsyth (AE), described interim feedback from a consultation with the European Dementia Carers Working Group (EDCWG); progress and provisional insights from a desk analysis of national dementia strategies, and outlines pending stakeholder interviews and a broad-spectrum survey of psychosocial intervention providers and payers. Collaborators from Masaryk University (Jakub Hlávka and Dominika Tóthová) then provided a deep-dive into their planned systematic review, which will inform the health economic framework. Bernhard Michalowsky and Mareike Pillert from DZNE then presented exploratory findings on important associations between psychosocial intervention and health economic endpoints. This work leveraged pooled randomized controlled trial data that the DZNE have been working hard to assimilate and harmonize. Ron Handels (Maastricht University) and Yunfei Li (Karolinska Institute) then described current evidence in relation to health economic modelling and visualized how the eventual framework might be validated and implemented in the ‘real world’.
The general assembly was topped off by a wonderful external speaker presentation by Jinjing Fu (Karolinska Institute), who provided an overview of the QOLEAD (Quality of Life by use of Enabling AI in Dementia) project which has uncovered a significant mismatch between what is valued by people who design interventions, people living with dementia, carers, health economic modelers and payers (the people who ultimately fund what is provided in the community).
This is an EU Joint Programme – Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND – http://www.jpnd.eu (Czech Republic, Ministry of Education, Youth and Sports (MEYS); Germany, Federal Ministry of Research, Technology and Space (BMFTR); Luxembourg, National Research Fund (FNR); Netherlands, The Netherlands Organisation for Health Research and Development (ZonMw); Sweden, The Swedish Research Council for Health, Working life and Welfare (FORTE)).
