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Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study
Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.ORCID iD: 0000-0001-6774-3480
Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
Alzheimer Centre Limburg, Maastricht University, Maastricht, Netherlands.
Bangor University, Bangor, UK.
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2019 (English)In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 27, no 5, p. e814-e823Article in journal (Refereed) Published
Abstract [en]

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

Place, publisher, year, edition, pages
WILEY , 2019. Vol. 27, no 5, p. e814-e823
Keywords [en]
access to care; dementia; in-depth interviews; informal care; service use
National Category
Other Medical Sciences
Identifiers
URN: urn:nbn:se:hig:diva-30560DOI: 10.1111/hsc.12804ISI: 000477388200001PubMedID: 31293018Scopus ID: 2-s2.0-85070981041OAI: oai:DiVA.org:hig-30560DiVA, id: diva2:1345227
Projects
Neurodegenerative Disease Research (JPND) project
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Note

The project is supported through thefollowing funding organizations underthe aegis of JPND – www.jpnd.eu [grant no. 733051001].

Germany, Ministry of Education and Research GrantIreland, Health research board Grant Italy, Ministry of Health GrantThe Netherlands, The Netherlands organization for Health Research and DevelopmentNorway, The Research Council of NorwayPortugal, Foundation for Science and Technology (Fundacao para a Ciencia e Tecnologia Grant no. FCT-JPND-HC/0001/2012 United Kingdom, Economic and Social Research Council 

Available from: 2019-08-23 Created: 2019-08-23 Last updated: 2019-09-04Bibliographically approved

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Sjölund, Britt-Marie

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