Community care for people living with dementia in Europe

A policy toolbox for implementing quality care

PROJECT CO-ORDINATOR

Katharine Schulmann

PROJECT TEAM AT THE EUROPEAN CENTRE

Stefania Ilinca, Kai Leichsenring

BACKGROUND

De-institutionalisation of care for older people is gaining ground as the public policy of choice in the area of long-term care in many European countries. Research into the implications of community care specifically for people with dementia has, however, been limited. Given that dementia is currently the second largest cause of disability for people aged 70 and older worldwide, this constitutes a fundamental gap in need of closer investigation. While community care has been shown to be more cost effective than institutional care overall, caring for people living in the community requires heavy involvement of informal carers which comes with its own costs—both social and economic—and which has important implications for the quality of care.

AIMS

The study aimed to develop a framework with which to conceptualise the key dimensions of community care for dementia, including social, economic, legal and governance elements. Building on this framework, the research team constructed a toolbox with which to guide policymakers in assessing existing models of care and in implementing good practices.

METHODS

Literature review 
Semi-structured expert interviews 
Expert focus group
Validation and dissemination workshop

ACTIVITIES/MILESTONES

Scoping review of the literature and development of the conceptual framework
Workshop with international expert stakeholders to validate the conceptual framework
Interviews with country experts on the ethical and legal dimensions of caring for people with dementia in the community
Validation and dissemination workshop co-hosted by the European Centre, the Swedish Ministry of Health and Social Affairs and the Swedish National Board of Health and Welfare

FINDINGS

The authors identified a number of key aspects of community care that often lead to frictions or tensions between different stakeholders and to inadequate care if they are not given appropriate attention by policymakers and service developers, including: differing perceptions of care needs and decision-making, informal carers as users of services, coordination of care and appropriate care-mix, and the desirability of community care.

PROJECT DURATION

2016/01 – 2016/12

FUNDED BY

Swedish Ministry of Health and Social Affairs