title: Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study.
abstract: Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries.
  
  
  
  In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected.
  
  
  
  The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers.
authors.affiliation: Maastricht University, Maastricht, Netherlands. liselot.kerpershoek@maastrichtuniversity.nl.
authors.forename: Liselot
authors.initials: L
authors.lastname: Kerpershoek
authors.affiliation: Maastricht University, Maastricht, Netherlands. m.devugt@maastrichtuniversity.nl.
authors.forename: Marjolein
authors.initials: M
authors.lastname: de Vugt
authors.affiliation: Maastricht University, Maastricht, Netherlands.
authors.forename: Claire
authors.initials: C
authors.lastname: Wolfs
authors.affiliation: Bangor University, Bangor, UK.
authors.forename: Hannah
authors.initials: H
authors.lastname: Jelley
authors.affiliation: UCL, London, UK.
authors.forename: Martin
authors.initials: M
authors.lastname: Orrell
authors.affiliation: Bangor University, Bangor, UK.
authors.forename: Bob
authors.initials: B
authors.lastname: Woods
authors.affiliation: Martin-Luther University Halle-Wittenberg, Halle, Germany.
authors.forename: Astrid
authors.initials: A
authors.lastname: Stephan
authors.affiliation: Martin-Luther University Halle-Wittenberg, Halle, Germany.
authors.forename: Anja
authors.initials: A
authors.lastname: Bieber
authors.affiliation: Martin-Luther University Halle-Wittenberg, Halle, Germany.
authors.forename: Gabriele
authors.initials: G
authors.lastname: Meyer
authors.affiliation: Oslo University Hospital, Oslo, Norway.
authors.forename: Knut
authors.initials: K
authors.lastname: Engedal
authors.affiliation: Oslo University Hospital, Oslo, Norway.
authors.forename: Geir
authors.initials: G
authors.lastname: Selbaek
authors.affiliation: Maastricht University, Maastricht, Netherlands.|Karolinska Institutet, Solna, Sweden.
authors.forename: Ron
authors.initials: R
authors.lastname: Handels
authors.affiliation: Karolinska Institutet, Solna, Sweden.
authors.forename: Anders
authors.initials: A
authors.lastname: Wimo
authors.affiliation: Dublin City University, Dublin, Ireland.
authors.forename: Louise
authors.initials: L
authors.lastname: Hopper
authors.affiliation: Dublin City University, Dublin, Ireland.
authors.forename: Kate
authors.initials: K
authors.lastname: Irving
authors.affiliation: CEDOC, Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
authors.forename: Maria
authors.initials: M
authors.lastname: Marques
authors.affiliation: CEDOC, Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal.
authors.forename: Manuel
authors.initials: M
authors.lastname: Gonçalves-Pereira
authors.affiliation: Alzheimer's Research Unit-Memory Clinic, IRCCS "Centro S.Giovanni di Dio, Brescia, Italy.
authors.forename: Elisa
authors.initials: E
authors.lastname: Portolani
authors.affiliation: Alzheimer's Research Unit-Memory Clinic, IRCCS "Centro S.Giovanni di Dio, Brescia, Italy.
authors.forename: Orazio
authors.initials: O
authors.lastname: Zanetti
authors.affiliation: Maastricht University, Maastricht, Netherlands.
authors.forename: Frans
authors.initials: F
authors.lastname: Verhey
mesh_terms: D017028:Caregivers; D003704:Dementia / Q000628:therapy*; D005060:Europe; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006801:Humans; D057187:Independent Living; D008137:Longitudinal Studies; D020380:Needs Assessment; D011788:Quality of Life
keywords: Dementia; Formal care; Needs; Service use