DEM-CAPS: DEMentia CAre and Psychosocial Support interventions estimating health-economic impact to
support access and implementation in practice
Dementia affects millions across Europe, yet the majority of those living with the condition and their informal caregivers face unmet care needs. While effective psychosocial interventions exist, limited implementation prevent widespread access.
To improve access to psychosocial support for persons with dementia and their informal caregivers, decision makers
are in urgent need for long-term health-economic estimates for implementation and reimbursement; evidence
which is currently lacking.
By collaborating with reimbursement decision-makers, patient organizations, and researchers, we seek to provide the evidence needed to improve quality of life, delay institutional care, and ensure sustainable funding for vital psychosocial interventions.
Funding
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 Education and Research (BMBF); Luxembourg, National Research Fund (FNR); Netherlands, The Netherlands Organisation for Health Research and Dev. (ZonMw); Sweden, The Swedish Research Council for Health, Working life and Welfare (FORTE)).
Abstract
Background
More than 90% of persons with dementia and their informal caregivers reported three or more unmet care needs. Fortunately, several psychosocial support interventions have been proven effective in addressing these unmet needs, improving symptoms and relieving informal caregiver burden. However, a lack of implementation and funding limits access to these interventions, and hence, unmet needs remain widely present. A reason for the implementation gap is incomplete knowledge of the resource use implications and cost-effectiveness of psychosocial interventions. To ensure that persons with dementia and their informal caregivers receive better psychosocial support, there is an urgent need for long-term health economic evidence on improving everyday quality of life, or delaying the need for long-term care. Such health-economic estimates can support decision-makers with required evidence for implementing and reimbursing psychosocial support interventions in practice.
Aim
Our overall aim is to develop and validate a health-economic modelling framework that demonstrates the value of psychosocial support interventions for non-institutionalized persons with moderate to advanced dementia and their informal caregivers in Europe in collaboration with reimbursement decision-makers and patient organizations.
Work plan
We propose five research questions (RQs) that, when answered, will strongly support the development and validation of a health-economic framework for psychosocial support in dementia care. For RQ1 (stakeholder analysis), we will explore the priorities and preferences of persons with dementia and caregivers through interviews, analysing care plans and assessing the perceived value of psychosocial support interventions. We will also conduct focus groups with payment and reimbursement decision-makers to describe the reimbursement pathway and identify the required health economic evidence needed for translation. In RQ2 (systematic literature review), we will evaluate how psychosocial outcomes have been used as surrogates for health-economic outcomes in existing studies. Additionally, RQ3 (data analysis) will develop and validate psychosocial outcomes as surrogates for health economic outcomes using large European observational datasets. In RQ4 (health-economic model), we will integrate RQ1-3 results into a health-economic modelling framework and apply it to two case studies to set an example of applying our developed framework. Finally, in RQ5 (stakeholder analysis), we will feedback our newly developed framework to the stakeholders in RQ1 for model validation. We will disseminate the model to ensure its application in research and value to reimbursement decision-makers.
Dissemination
Open-access scientific publications; Alzheimer Europe conference; 3-day curriculum for psychosocial intervention PhD students (INTERDEM, Alzheimer Europe and its member organizations, and EATRIS network); open-source access to our modelling framework and all its associated materials. Dissemination to payment/reimbursement decision-makers is embedded in RQ1 and RQ5.
Patient/public involvement
Alzheimer Europe will involve people living with dementia and their carers throughout the project, coordinating consultations of the European Working Groups of People with Dementia, and Carers.
Research questions
RQ1: “Which organizations provide psychosocial support interventions for persons with moderate/advanced
dementia and their informal caregivers in each of the participating countries of this proposal (SE, NL, CZ, DE,
LU), how are these interventions reimbursed, and what outcomes and (cost-)effectiveness evidence would
facilitate more extensive implementation and reimbursement?”.
RQ2: “Which psychosocial outcomes in persons with dementia or their informal caregivers are statistically
associated with health-economic endpoints (health‐related quality of life, healthcare/resource use, institutional
transitions) in published literature?”.
RQ3a: “What is the association between persons with dementia and their informal caregivers psychosocial
outcomes and health-economic outcomes (health-related quality of life, care use and transitions), adjusted
for potential confounding factors in available observational and randomized trials?”.
RQ3b: “Do psychosocial support interventions affect health-economic outcomes and the associations
between psychosocial and health-economic outcomes?”.
RQ3c: “Can heterogeneity between associations and impact (under RQ3a and RQ3b) be explained by
disease progression or biological, environmental, social and economic factors?”
RQ4: “What is the long-term cost-effectiveness of current psychosocial support interventions for the support of
informal caregivers for persons with moderate/advanced dementia in specific European countries/regions?”.
RQ5: “Is the developed framework (RQ4) transparent and valid for reimbursement decision making and how
can the framework be implemented for reimbursement decisions for psychosocial support interventions?”.
DEM-CAPS 