Access to timely formal dementia care in Europe

Protocol of the Actifcare (ACcess to Timely Formal Care) study

Liselot Kerpershoek, Marjolein De Vugt, Claire Wolfs, Hannah Jelley, Martin Orrel, Bob Woods, Astrid Stephan, Anja Bieber, Gabriele Meyer, Knut Engedal, Geir Selbaek, Ron Handels, Anders Wimo, Louise Hopper, Kate Irving, Maria João Lopes Marques, Manuel Gonçalves-Pereira, Elisa Portolani, Orazio Zanetti, Frans Verhey

Research output: Contribution to journalArticle

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Abstract

Background: 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. Methods: 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. Discussion: 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.

Original languageEnglish
Article number423
JournalBMC Health Services Research
Volume16
Issue number1
DOIs
Publication statusPublished - 23 Aug 2016

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Dementia
Causality
Caregivers
Quality of Life
Practice Guidelines
Costs and Cost Analysis
Independent Living
Longitudinal Studies
Cohort Studies
Health
Research

Keywords

  • Dementia
  • Formal care
  • Needs
  • Service use

Cite this

Kerpershoek, Liselot ; De Vugt, Marjolein ; Wolfs, Claire ; Jelley, Hannah ; Orrel, Martin ; Woods, Bob ; Stephan, Astrid ; Bieber, Anja ; Meyer, Gabriele ; Engedal, Knut ; Selbaek, Geir ; Handels, Ron ; Wimo, Anders ; Hopper, Louise ; Irving, Kate ; Marques, Maria João Lopes ; Gonçalves-Pereira, Manuel ; Portolani, Elisa ; Zanetti, Orazio ; Verhey, Frans. / Access to timely formal dementia care in Europe : Protocol of the Actifcare (ACcess to Timely Formal Care) study. In: BMC Health Services Research. 2016 ; Vol. 16, No. 1.
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Kerpershoek, L, De Vugt, M, Wolfs, C, Jelley, H, Orrel, M, Woods, B, Stephan, A, Bieber, A, Meyer, G, Engedal, K, Selbaek, G, Handels, R, Wimo, A, Hopper, L, Irving, K, Marques, MJL, Gonçalves-Pereira, M, Portolani, E, Zanetti, O & Verhey, F 2016, 'Access to timely formal dementia care in Europe: Protocol of the Actifcare (ACcess to Timely Formal Care) study', BMC Health Services Research, vol. 16, no. 1, 423. https://doi.org/10.1186/s12913-016-1672-3

Access to timely formal dementia care in Europe : Protocol of the Actifcare (ACcess to Timely Formal Care) study. / Kerpershoek, Liselot; De Vugt, Marjolein; Wolfs, Claire; Jelley, Hannah; Orrel, Martin; Woods, Bob; Stephan, Astrid; Bieber, Anja; Meyer, Gabriele; Engedal, Knut; Selbaek, Geir; Handels, Ron; Wimo, Anders; Hopper, Louise; Irving, Kate; Marques, Maria João Lopes; Gonçalves-Pereira, Manuel; Portolani, Elisa; Zanetti, Orazio; Verhey, Frans.

In: BMC Health Services Research, Vol. 16, No. 1, 423, 23.08.2016.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Access to timely formal dementia care in Europe

T2 - Protocol of the Actifcare (ACcess to Timely Formal Care) study

AU - Kerpershoek, Liselot

AU - De Vugt, Marjolein

AU - Wolfs, Claire

AU - Jelley, Hannah

AU - Orrel, Martin

AU - Woods, Bob

AU - Stephan, Astrid

AU - Bieber, Anja

AU - Meyer, Gabriele

AU - Engedal, Knut

AU - Selbaek, Geir

AU - Handels, Ron

AU - Wimo, Anders

AU - Hopper, Louise

AU - Irving, Kate

AU - Marques, Maria João Lopes

AU - Gonçalves-Pereira, Manuel

AU - Portolani, Elisa

AU - Zanetti, Orazio

AU - Verhey, Frans

PY - 2016/8/23

Y1 - 2016/8/23

N2 - Background: 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. Methods: 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. Discussion: 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.

AB - Background: 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. Methods: 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. Discussion: 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.

KW - Dementia

KW - Formal care

KW - Needs

KW - Service use

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