Support for informal caregivers
Authors: Anthierens Sibyl , Willemse Evi , Remmen Roy , Schmitz Olivier , Macq Jean , Declercq Anja , Arnaut Catarina , Forest Maxime , Denis Alain , Vinck Imgard , Defourny Noémie , Farfan-Portet Maria-Isabel 
Published: January 2025

INTRODUCTION 9 -- 1 1 BACKGROUND 9 -- 1 2 OBJECTIVES AND SCOPE 10 -- 1 3 METHODS 11 -- 1 4 STRUCTURE OF THE REPORT 11 -- 2 RESEARCH ON CAREGIVERS IN BELGIUM 12 -- 2 1 SURVEYS IDENTIFIED USED IN STUDIES ON INFORMAL CARE IN BELGIUM 12 -- 2 2 INFORMAL CARE IN BELGIUM: RESULTS FROM REPRESENTATIVE POPULATION BASED SURVEY 13 -- 2 2 1 Characteristics of national or regional representative population based surveys 13 -- 2 3 CAREGIVERS EXPERIENCES AND IMPACT OF CAREGIVING 20 -- 2 3 1 Are there difference in the socio-economic characteristics of highly and less involved caregivers in informal caregivers? 20 -- 2 3 2 Caregiver burden and the impact on the subjective health of the caregiver 20 -- 2 3 3 Perception of positive and negative care experiences 20 -- 2 3 4 Information needs of caregivers 21 -- 2 3 5 Needs and expectations with regard to professional help and respite care 22 -- 2 3 6 Needs for recognition 22 -- 2 3 7 How to support caregivers? 23 -- 3 INTERNATIONAL COMPARISON OF SUPPORT MEASURES FOR INFORMAL CAREGIVERS IN BELGIUM 23 -- 3 1 INTRODUCTION 23 -- 3 2 METHODS 23 -- 3 3 WHO IS INVOLVED IN FINANCING FORMAL SERVICES FOR LONG-TERM CARE? 24 -- 3 4 OVERVIEW ON INFORMAL CAREGIVERS IN SELECTED COUNTRIES 35 -- 3 4 1 Care-receivers preferences on the provision of formal and informal care 35 -- 3 4 2 Who are the informal caregivers? 35 -- 3 4 3 Definition of maintenance obligation towards dependent individuals and definition of status for caregivers 38 -- 3 5 MEASURES AIMING AT AVOIDING OR REDUCING LOSS OF INCOME, SOCIAL SECURITY -- BENEFITS OR EMPLOYMENT 41 -- 3 5 1 Financial support for informal caregivers 41 -- 3 5 2 Pension benefits for caregivers 47 -- 3 5 3 Unemployment benefits for caregivers 49 -- 3 5 4 Leaves for caregivers 51 -- 3 6 AVAILABILITY OF RESPITE CARE, PSYCHOSOCIAL SUPPORT AND INFORMATION AND COMMUNICATION TECHNOLOGY (ICT) 53 -- 3 6 1 Legal entitlement to respite care 53 -- 3 6 2 Respite care summing up multiple possibilities 54 -- 3 6 3 Global policy for psychosocial support and information 55 -- 3 7 EVALUATION OF MEASURES FOR INFORMAL CAREGIVERS AT A NATIONAL LEVEL 57 -- 3 7 1 Assessing the support measures to avoid loss of income, of social security benefits or of employment 57 -- 3 7 2 Assessing respite care and psychosocial support 59 -- 4 POLICY MEASURES IN THE EYES OF CAREGIVERS: A CASE STUDY ANALYSIS 61 -- 4 1 DESIGN: AN EMBEDDED MULTIPLE CASE STUDY 61 -- 4 1 1 Why a case study design? 61 -- 4 1 2 Recruitment of dyads 62 -- 4 1 3 Preparation of the fieldwork in each of the case studies 63 -- 4 2 DATA COLLECTION AND ANALYSIS: A COORDINATED APPROACH 66 -- 4 2 1 Organization of the data collection between researchers and coordination 66 -- 4 2 2 Intra-case analysis 66 -- 4 2 3 Lessons learned from abroad: inter-case analysis 66 -- 4 3 RESULTS FOR THE INTRA-CASE ANALYSIS 66 -- 4 3 1 The ups and downs of the recruitment strategy 66 -- 4 3 2 Sample description 67 -- 4 3 3 Flanders 68 -- 4 3 4 Wallonia 74 -- 4 3 5 Brussels 81 -- 4 3 6 France 91 -- 4 3 7 The Netherlands 99 -- 4 3 8 Germany 105 -- 4 3 9 Luxembourg 111 -- 4 4 RESULTS OF THE INTER-CASE ANALYSIS 115 -- 4 4 1 So many nationalities and cultural backgrounds, the same reasons to care 115 -- 4 4 2 Are informal caregivers aware of the existing support measures? 115 -- 4 4 3 Is the access to support measures related to informal caregivers characteristics? Do informal caregivers benefit from existing support measures and how? 116 -- 4 4 4 What has been the impact/effect of these support measures on the continuity of care for the dependent older person and the subsequent impact on the institutionalization -- process? 118 -- 5 CONCLUSION AND DISCUSSION 120