TY - JOUR

T1 - Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study

AU - Kerpershoek, Liselot

AU - de Vugt, Marjolein

AU - Wolfs, Claire

AU - Jelley, Hannah

AU - Orrell, Martin

AU - Woods, Robert

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

AU - Gonçalves-Pereira, Manuel

AU - Portolani, Elisa

AU - Zanetti, Orazio

AU - Verhey, Frans

N1 - The project is supported through the following funding organizations under the aegis of JPND - www.jpnd.eu. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology, (Fundação para a Ciência e Tecnologia (FCT - JPND-HC/0001/2012), United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study.

PY - 2016/8/23

Y1 - 2016/8/23

N2 - Background: Previous findings indicate that people with dementia and their informal carers experience difficultiesaccessing and using formal care services due to a mismatch between needs and service use. This mismatch causesoverall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background andmethods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practicedevelopment in finding timely access to formal care for community-dwelling people with dementia and theirinformal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the useof formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Comparethese across European countries, 4) Understand the costs and consequences of formal care services utilization inpeople with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formalcare services across European countries.Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people withdementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we willclosely monitor the process of finding access to formal care. Data on service use, quality of life and needs will becollected.Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledgeabout 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 benefitpeople with dementia and their informal carers.Keywords: Dementia, Formal care, Service use, NeedsAbbreviations: Actifcare, ACcess to Timely Formal Care study; CANE, Camberwell assessment of need for theelderly; CarerQol, Care related quality of life scale; CDR, Clinical dementia rating; DEMQOL, Dementia quality of life;HADS, Hamilton anxiety and depression scale; IADL, Instrumental activities of daily living; LSNS-6, Lubben socialnetwork scale; MMSE, Mini mental state examination; NPI-Q, Neuropsychiatric inventory; PAI, Positive affect index;PSMS, Physical self-maintenance scale; QOL-AD, Quality of life- Alzheimer’s disease scale; RSS, Relative stress scale;RTCP, Right time place care; RUD, Resource utilisation in dementia instrument; SOC-13, Sense of coherence

AB - Background: Previous findings indicate that people with dementia and their informal carers experience difficultiesaccessing and using formal care services due to a mismatch between needs and service use. This mismatch causesoverall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background andmethods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practicedevelopment in finding timely access to formal care for community-dwelling people with dementia and theirinformal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the useof formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Comparethese across European countries, 4) Understand the costs and consequences of formal care services utilization inpeople with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formalcare services across European countries.Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people withdementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we willclosely monitor the process of finding access to formal care. Data on service use, quality of life and needs will becollected.Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledgeabout 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 benefitpeople with dementia and their informal carers.Keywords: Dementia, Formal care, Service use, NeedsAbbreviations: Actifcare, ACcess to Timely Formal Care study; CANE, Camberwell assessment of need for theelderly; CarerQol, Care related quality of life scale; CDR, Clinical dementia rating; DEMQOL, Dementia quality of life;HADS, Hamilton anxiety and depression scale; IADL, Instrumental activities of daily living; LSNS-6, Lubben socialnetwork scale; MMSE, Mini mental state examination; NPI-Q, Neuropsychiatric inventory; PAI, Positive affect index;PSMS, Physical self-maintenance scale; QOL-AD, Quality of life- Alzheimer’s disease scale; RSS, Relative stress scale;RTCP, Right time place care; RUD, Resource utilisation in dementia instrument; SOC-13, Sense of coherence

KW - Dementia Formal care Service use Needs

U2 - 10.1186/s12913-016-1672-3

DO - 10.1186/s12913-016-1672-3

M3 - Article

VL - 16

SP - 1

EP - 7

JO - BMC Health Services Research

JF - BMC Health Services Research

SN - 1472-6963

IS - 423

ER -