Support measures for informal caregivers: an exploratory analysis

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1 Support measures for informal caregivers: an exploratory analysis Sibyl Anthierens (UA), Evi Willemse (UA), Roy Remmen (UA), Olivier Schmitz (UCL), Jean Macq (UCL), Anja Declerq (Lucas), Catarina Arnaut (YW), Alain Denis (YW), Maxime Forest (YW), Vinck IM (KCE), Noémie Defourny (KCE), María Isabel Farfan- Portet (KCE)

2 Background An ageing population wanting to live at home as long as possible Central and essential part of the long-term care system Availability of informal caregivers may decline

3 Objective: To discuss the advantages and short-comings of support measures for informal caregivers (ICG) Method (1): Literature review Entitlement criteria, uptake, expenditures and impact Belgium, France, The Netherlands, Germany and Luxembourg Method (2): Case studies design To illustrate the use and perception of support measures Total of 37 interviews in selected countries and Flanders, Wallonia, Brussels 3

4 Support for informal caregivers is a complex issue Measures scattered in social security system Very different entitlements and eligibility criteria Caregiver allowance (FL and NL) Contracts & cash-for-care allowance (FR, NL & LU) Overall limited data on uptake (user s characteristics ) & expenditures Each caregiving situation is unique: need for tailor made support

5 Support for informal caregivers (ICG) is a complex issue BE FR NL DE LU Financial compensation Caregivers allowance Labour contract & cash-for-care allowances Yes Mantelzorgpremie No APA-TAHB; Vlaamse zorgverzekering No Yes Allocation personnalisée d'autonomie Yes Mantelzorgcompliment Yes Persoonsgebonden budget No No Pflegegeld No Yes Prestation en espèces Pensions benefits Unemployment benefits Leave or labour contact Leave or labour contact Yes with contract Yes Yes Right extension No Yes with contract & Yes No right extension Specific leave policies Paid Yes No No No No Unpaid Collective agreements Yes Collective agreements Yes Collective agreements Flexible hours Yes, via paid leave Collective agreements Collective agreements Yes Collective agreements Respite - psychosocial support Access via Different services Different services Cash-for-care allowance Entitled to 1500 / year Cash-for-care allowance

6 Evidence on support measures: Financial compensation Caregivers allowance Cash-for-care allowances Pension Benefits Unemployment benefits Literature Nice to have, no influence on care decision Uptake : Simple eligibility criteria Seldom used to compensate ICG When a paid job, mostly for women and not covering time - investment Policy: not aiming at making paid job Policy trade-offs Risk changing a solidarity-based relationship In cash or in kind: Socioeconomic characteristics (SES) More care burden for some ICG Poverty traps Only option to protect some ICG Evidence Low uptake; mostly for women Long-term impact on income? Policy trade-offs : same as before?? Case-studies As in the literature Nice to have Belgian ICG do not make a difference between allowances As in the literature No labour contract, no compensation for ICG Household budget Use and perception depends on SES Appreciated by ICG

7 Evidence on support measures: Financial compensation Caregiver allowance Nice to have not influencing the care choice Cash-for-care allowances Seldom used to compensate ICG When a paid job, for women & not at the level of their care work Social security benefits Pensions: low uptake, mostly for women Unemployment:?

8 Evidence on support measures: Financial compensation Policy-trade offs Change a solidarity-based relationship More care burden for some ICG Employment traps: low-paid jobs & difficulty to re-enter the labour market Yet, a tool to guarantee minimum living standards

9 Evidence on support measures: Leave policies and respite psychosocial support Literature Specific leave policies Paid Not so often used (BE) but uptake increases Long-term impact? Case-studies Appreciated by ICG (BE) Used to ensure continuity of care Unpaid Limits uptake A limit for some ICG Flexible hours Essential to manage care and work responsibilities. First option, before using paid or unpaid leaves Appreciated by ICGs Used to ensure continuity of care Sick leave - Used is some cases Respite - psychosocial support Small positive effect on different health outcomes Although help appreciated Low uptake, even when entitle to services. Uptake related to: Knowledge of and availability Adapted to dyad needs and preferences Cost Not easy decision for ICG Need for adapted services From the sample, only Belgian ICG reported concerns on the cost of services

10 Evidence on support measures: Leave policies and flexible work arrangements Leave policies and flexible work arrangements Helps covering holes in formal care services & insure continuity of care Flexible work schedule first option before leaves arrangements A barrier in use of leaves can be absence of financial compensation

11 Evidence on measures: on respite care and psychosocial support Access to respite care and psycho-social is related to Knowledge of and availability In line with preferences of the dyad At an affordable cost Even in countries were informal caregivers are entitled to both services uptake is low

12 Evidence on Belgian informal caregivers Information as a key issue Dependent person s health and support for them Need of being proactively informed Fragmentation of the system limits use of policies for the dyad From case studies Formal care only form of support More difficult accessing information Language barrier

13 Recommendations To the Minister of Social Affairs and Public Health To call for a society debate on the place of informal caregivers in the long-term care system Considering inequalities relating to providing informal care and policy trade-offs of support measures Whether and how access to support measures will be linked to the legal status of informal caregivers 13

14 Recommendations To sickness funds, informal caregivers and patients associations and all competent authorities To improve the access to information by developing an single information platform (web-based) On practical aspects that can help people to ensure their care role In partnership with all actors and guided by Interministerial Conference All actors continue to disseminate information using the new platform 14

15 Recommendations To health and social care professionals 15 Develop a care plan for informal caregivers by well informed professionals on support measures Provide guidance looking for information and coordinating formal services Proactively propose respite care and psychosocial support accommodating preferences of the dyad Training to develop a partnership with the informal caregiver and to screen situation where care can be compromised

16 Recommendations Recommendations for further research To develop a database linking benefits in cash and in kind with information on the care needs of dependent people needs (using an appropriate tool such as the BelRai) To study the functioning of different coordinating services or roles and their role in the organisation of care for the dependent person and the informal caregiver 16

17 17 THANK YOU!

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