Supporting INclusive development of community-based long-term CARE services through multi-stakeholder participatory approaches

InCARE

PROJECT CO-ORDINATOR

PROJECT TEAM AT THE EUROPEAN CENTRE

Kai Leichsenring, Rahel Kahlert, Cassandra Simmons, Elif Naz Kayran, Klara Lorenz-Dant, Stefania Ilinca, Judith Schreiber, Sandra Scharf

PROJECT PARTNERS

Federal Ministry for Social Affairs, Health, Care and Consumer Protection (Austria) (Associated partner)

Ministry of Labour and Social Policy (North Macedonia)

Ministry of Health (North Macedonia)

IMSERSO - Instituto De Mayores Y Servicios Sociales (Spain)

Fundacion Instituto Gerontologico Matia Ingema (Spain)

Red Cross Of The Republic Of North Macedonia (North Macedonia)

Chance B Group (Austria)

London School of Economics & Political Science (United Kingdom)

Stichting Vilans (The Netherlands)

Eurocarers (Belgium)

BACKGROUND

European countries face the formidable challenge of providing adequate, affordable and sustainable support to their ageing populations. Socially innovative approaches are required in order to manage the inherent complexity of LTC systems and respond to such challenges in a flexible but coordinated fashion at all governance levels.

InCARE aimed to contribute to a coherent and coordinated approach in the development of LTC policy and care services at local and regional level. It worked towards establishing socially innovative and participatory decision-making processes that allow for iterative and adaptive learning and brought together policy-makers, care service providers, researchers and care users from six European countries. Three socially innovative long-term care service pilots were implemented In Spain, Austria and North Macedonia.

AIMS

InCARE promoted participatory, innovative and integrated approaches to LTC policy and service development by focusing on aspects that are instrumental for system sustainability and innovation capacity: multi-stakeholder cooperation, evidence based decision-making, capacity building and skills transfer. It focused on the development of a coherent and coordinated approach to the development of national LTC policy and care services, with a focus on empowering local stakeholders, communities, care users and their families to contribute to and shape the development of LTC services.

Out starting point was that social innovation in LTC should reflect the aspirations and needs of older people with functional or cognitive impairment and their caregivers, while emphasising the role of local communities and service providers in shaping care service delivery in innovative ways, facilitated by national policy-level support for adapting, adopting and enhancing these initiatives.

METHODS

InCARE emphasised multi-stakeholder and multi-disciplinary collaboration and established learning communities that favored horizontal and vertical skill and knowledge transfer nationally and internationally. Technical partners provided support through research, outreach, dissemination, implementation and evaluation activities, while national implementation partners were empowered to develop a coherent local approach to LTC policy and service design.

ACTIVITIES/MILESTONES

InCARE included three main types of activities:

1. Formative research activities in support of policy processes, including the creation of a shared knowledge base for all project partners, detailed situational analyses of the LTC landscape in each country, multi-stakeholder workshops leading to the creation of a Theory of Change map and the generation of policy toolkit and road-map.

2. National pilot implementation activities, pilot design specific to each country, implementation and evaluation by local project teams. National partners focused on 3 distinct service areas: Caregiver support for informal carers of people living with dementia (Spain), Integrated care services (Austria); Emergency button service (North Macedonia).

3. Technical and support activities, including: coordination, evaluation, monitoring and dissemination activities

FINDINGS

InCARE was able to engaged with a range of stakeholders (providers, policy makers on different levels, people in need of care, informal carers) in the process of implementing social innovation in community-based long-term care. It demonstrated the usefulness of Theory of Change approaches in designing pilot projects to further develop LTC systems.

The project successfully implemented three different pilot projects focusing on:

Improved support for informal carers of people living with dementia through the SENDIAN program including training for those who lead the group support sessions, improved networking with social workers and municipalities (Spain)
A range of measures to improve integrated care for older people receiving mobile care in the community such as training for professional carers, information for informal carers, a monthly café for people living with dementia and their informal carers, adaptations to the consultation process carried out by professional carers, an easy to read version of terms and conditions of accessing care services, networking among providers, international knowledge exchange on community nursing, information fairs about options for receiving care in the community (Austria)
Development and implementation of an emergency button service for older people living in the community and training for professional carers (North Macedonia).

The pilot projects were developed with consultation from policy partners to increase sustainabilit. Moreover, the project included study visits (to the Netherlands and Austria) to learn from LTC systems in other countries. InCARE also carried out several activities aimed at supporting the process of further developing LTC systems in these three countries, including:

Planning and implementation of a survey on expectations, attitudes and experiences regarding LTC and
Policy roadmaps including calculations of future costs of LTC based on different scenarios